Parenting Autism

How I Stopped Pitying My Child

2011-06-07T11:52:00.000-04:00

I had to hire a babysitter to I could go pee, so Dylan (son #2) could survive until his first birthday. Tristan had claws like lobsters and every time, just walking, Dylan would toddle over to big brother Tristan to steal one of his lined-up plastic animals, Tristan would pinch his cheeks. Dylan became our star therapist always interrupting Tristan’s autistic trance, but the downside was that Dylan had continual bloody cheeks for about two years.

One morning I plopped Dylan up on the counter to apply his daily dose of antibacterial cream to his cheeks and it occurred to me that we needed to change course and I was enabling Tristan to behave poorly because I pitied him. At four years old, Tristan blabbed like a six month old; when he wanted a cracker he would stand at the cabinet until I got him a snack. We were working on, “cracker, please” and if I said it, Tristan would repeat.

After the first few months that Tristan was diagnosed with autism I let all the “professionals” take over the responsibility of raising my child. They had their P.H.D.s in speech therapy, physical therapy, childhood development, and occupational therapy and in my sleep deprived mind they were the best choice to parent Tristan.

Like Sleep Beauty being woken with a kiss, I was shaken out of my stupor with words from a good friend and established parent of five who also just so happens to be a developmental pediatrician, “Angela, you know that some of Tristan behaviors are typical, right?” I shot back a glance and said, “What do you mean?” He went on to explain that kids are first kids (the autism was second) and that they need structure and discipline.

This concept of Tristan having typical behaviors that all toddlers and preschoolers flirt with like hitting, pinching, biting, and tantrums at first made me angry (OH, so now I have to not only deal with the autistic characteristics, but I have to also parent his typical behaviors!) and at the same time relieved for having Tristan have a part of him that was like all his peers.

Over the next few months we (our team including me) made structure and consequences for good and bad actions a continual plan we were all working on. If Tristan hit another child, he had a time-out (see blog post for tips for time-outs), but for every negative interaction we balance it with five positive interactions. You can easy slide into (and I still do) correcting or disciplining and not recognizing when your child doesn’t hit or pinch or says, “Mama, cracker, please?” The balance is the key to growing your child into a responsible older child that understands boundaries and respects others.

Finally, the last piece is consistency and practice. Tristan needed more time to practice how to sit on the step for a time out. We began with many visual cues and a limited amount of time (again, really you should read this blog post). Then we all practiced praising when Tristan deserved being rewarded (don’t give out positive praise too quickly). The whole process still continues and we are still practicing but not at the “boot camp” level; now it is integrated into our everyday life.

Paying for autism, can we really afford it?

2011-05-16T21:00:00.000-04:00

Disclaimer: My desire is to keep Parenting Autism focused on parenting subjects but often parenting a child with autism and politics blur the lines and I have to discuss the boarder implications of policy decisions. Thank you for your continued support.

Over the last few months I have been working with a group of parents and professionals (VT CAIR) on lobbying the Vermont legislature to not repeal the autism insurance reform law that passed and was signed into law last year. ACT 127 (aka Autism Insurance Reform) mandates insurance companies and Medicaid to pay for autism services (behavioral therapy, occupational therapy, physical therapy, speech therapy) for children 18 months old to six years old. After last session we felt good, we got some needed legislation passed with some concessions but that is politics, right?

Then we went into the current session (2011) with a new Democratic Governor and we thought, great! ACT 127 was ready to expand to include individuals above six years old, but we got stopped right on the State House steps. Governor Shumlin and the Democratic house and senate had not put the money into the budget to fulfill their Medicaid commitment and their best option was repealing ACT 127. We said no, no, we will compromise and this year we will take just private insurance ($.70 a month per premium holder) and then next year we can implement Medicaid coverage. Even that got months of debate.

This is where I have problem, whether it is a political, moral, spiritual, or intellectual problem I am not sure, you can decide. Here is my dilemma: for the price of an apple every month we decided children with autism (and their families) are not worth the medical treatment they deserve and need.

How can this happen in a liberal, New England state in the richest country in the world? I don't know. The political, cynical side of me understands that the vulnerable are always targeted in tough economic times, but the hopeful side fights back with confusion. How did our nation, the great "melting pot", arrive here, where children are not getting medical care they need. We are all responsible because for far too long in this country we turn the other way and say, "well, that's not my problem."

We get consumed with our busy lives and end-up walking around with blinders on, not seeing that our neighbors need help. This is not a Vermont problem. Accessing proper treatment for children with autism exists all across our nation. Some states are slowly passing legislation to mandate insurance companies to pay for autism services, but more needs to be done.

The longer we wait the higher the price tag. Not just in the children getting denied access to healthcare but in real dollars and cents. According to the Autism Society of America, " (the) cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention." As a society we are making a choice to limit opportunities to children with autism and to assume the skyrocketing cost of adult care unless we look at our fellow citizens and take care of each other.

Related blog post: Vermont State House Passes Autism Insurance Bill

Top 5 Tips to Help your Child Avoid Bullying

2010-11-30T10:07:00.001-05:00

Avoiding bullying can take a toll on not just your child but the entire family. Kids with autism spectrum disorder (ASD) can be especially vulnerable to bullying, so beginning the bullying talk early can be beneficial to making sure your child can advocate for himself and is not be prey to the bully. Here are five tips to help your child dodge the bully:

Give Examples. Explain to your child about what it looks like when people are making fun of your child or being mean. If you witness someone teasing or being cruel to your child point-it-out to your child. For example: “When Joey said you are a nerd that was not nice.” Often children with ASD don’t know when people are being unkind to them, so you need to teach what callous behavior looks like and then you can start with the next step.

Open the communication lines. Have frequent conversations with your child about what is teasing, what is bullying, and what is a friend, and then ask questions like “Did anyone get in trouble today?” or “Who are your favorite friends?”

Help Your Kid Find His Group. When kids have friends and travel in a group they are less likely to be targeted by a bully, so encourage your child to find his cliché. Join clubs or sports that your child likes and try to establish friendships.

Teach You Child How-to Stand-Up to the Bully. Teach your child how to leave the situation without too much harm.

· First don’t engage (no talking or physical behavior, it will just encourage the bully).

· Walk quickly away (don’t run, they will chase).

· Find a trusted adult to tell

Talk to other parents and teachers. Avoid potential problems by talking your son/daughter’s teacher and other parents at your child’s school. Knowing the potential bully or his parents can help prepare your child to stay clear of the path of the bully or help you defuse the situation. What is the climate at school? Who are the kids that are the aggressors?

Stay Fit while Getting Centered

2010-11-16T12:03:00.000-05:00

“What happened to Tristan yesterday?” asked his case manager at school.

I tilted my head with a dash of confusion and slight terror as Tristan has gotten himself into some tricky social situations recently and said, “What do you mean?”

As her eyes widened, she said, “Well, Tristan was so focused during our sessions today. No flopping on the floor or fidgeting in his seat.”

Suddenly I knew what she was talking about; Tristan had swum the night before. Not dawdling around the pool with us, but swim team. Seventy-five minutes of working on strokes and swimming laps.

Often kids on the spectrum (my kid included) prefer play a video game to getting their heart pumping. The rules can be difficult to follow and interacting with peers— well, is tough and most youth activities that keep you “lean and cute” are team sports. All kids (rather all people) need regular exercise to stay healthy mentally and physically, so here is a list of some sports/activities that kids on the spectrum have enjoyed:

· Swimming: Try a local non-competitive swim team to learn different stokes and to get your body moving.

· Ice Skating: Take a US Figure Skating group lesson. Some kids love the gliding on the ice and feeling the wind on their faces.

· Downhill Skiing: Again the wind on the face is loved by all that crave sensory stimulation. Schedule a private lesson on a beginner slope to learn how-to turn and stop.

· Biking: Once you get the technique down, biking can be freedom while working your muscles.

· Martial Arts: Discipline and moving your body are pieces to martial arts.

· Quidditch: This is a team game, but for Harry Potter fans (like Tristan) it can be trilling. Check your local Parks and Recreation for Quidditch teams in your area.

Last tip: inform the instructor that your child has autism and tell them how best your child learns or what to do with unwanted behaviors. Remember they might not know what autism is or how to help your child, so give them some clues and help.

Snap that Umbilical Cord

2010-09-09T13:09:00.001-04:00

For many months, perhaps even years, I have been preparing for this day. I am not birthing a child or graduating from school or giving my vows of marriage, I have done all that, no this afternoon I cut the umbilical cord. Not the one Peter slit, but the cord of dependence that has been stretched to the point of breakage.

Over the summer Peter and I began leaving Tristan home alone while we ran two blocks to pick-up milk and bread. Just like teaching Tristan how-to communicate or what social cues look like, we have coached Tristan in being responsible while being home alone. Being home alone is one thing, but now Tristan will be walking from school to the library with friends. Two blocks, one side street to cross, and hanging-out with the others kids that is what I will face this afternoon.

My friend, Diana, said you could spy from across the street. As much as I want to jump behind the bushes and experience Tristan’s independence with him that would be just stretching the cord further not snapping it. We moved to this town of 8,000 residents so our children could grow-up walking to school and to the store. In the 1970’s I walked to kindergarten with a friend, without a parent. Today, crime is lower than the 1970s and 1980s and I still have ping in the stomach every time I think of Tristan strutting down the sidewalk.

Just like the sadness and anxiety of weaning a nursing baby or leaving your kindergartener at school, plunging your child into the world without you is another milestone toward adulthood. The sadness comes with the realization that you can never turn back. It is not like I can begin nursing my eight year old again as much as I might miss the cuddling, I really don’t miss always carrying a baby, so we are moving forward and growing (hopefully not horizontally).

What to do with a Public Meltdown

2010-09-08T20:22:00.000-04:00

All the lunch-goers at Faneuil Hall in Boston probably expected a peaceful lunch while people watching from their cafe tables. Instead they got Liam in total melt-down mode for about as long as it takes to order drinks and your meal, then to have the chef prepare your burger and fries and for you to consume all of it. I should have seen the melt-down coming, Liam had the right forecast-- barely any sleep the night before, it was lunch time, and we were in Boston, three hours from our house. But the sunshine and seventy degree weather blinded my perspective.

For 45 minutes I sat with Liam on a bench while he tried to stop screaming, "I want new, green Crocs." I wished he would stop screaming, kicking, and hitting, but hoping and crossing all my toes and fingers did not seem to help. So, I pulled-out my parenting toolbox right-on one of the busiest spots in Boston and went to work.

Even though I am writing about Liam, who is typically developing, kids are kids first before any diagnosis (like autism) and all kids have tantrums and sometimes they have meltdowns. Tantrum vs. meltdown: I think of tantrums as a power struggle (I want this toy and you will buy it or I will scream) and meltdowns are a complete loss of control. There is no reasoning or distracting, the meltdown just has to run its course. I bet most of these melt-downs happen in the public eye.

As a parent you probably know what triggered the meltdown-- a sound, plummeting blood sugar levels, lack of sleep, a sensory overload, or all of the above. So, what do you do in the middle of a busy tourist destination with a screaming, kicking kid?

First, check-in with yourself-- are you calm? Have you lowered your voice? Are you remembering to breath slowly? Allow yourself to pause and not be in a rush.
Second, forget about the on-lookers! Either they are empathic (I have been there with my child) or annoyed and probably have never raised children. Focus on your kid, remember this can be a teachable moment (self regulation).
Third, find a quiet, empty space for your child to sit and place him there.
Tell him why he is being place in the spot (I use the same language as at home-- break spot or time-out spot). Remember to keep your language simple and clear, like "Liam, you can get up when stop crying, kicking, and hitting."
If your child gets up or tries to make break-for-it set him back down in the "break" spot without any words. And keep doing it, don't break and give into the meltdown... you have come so far, don't give-up now. Remember you are teaching emotional regulation, once your child calms then you can move-on.
Now this is the hard part, you need to WAIT until they can get themselves together and out of meltdown mode.
Finally, when all is calm (or at least somewhat reasonable) hug and move-on to getting sleep, food, or a less busy environment.

We all have our moments when life gets to overwhelming and we break, however most adults have learned strategies to cope with their own meltdowns and that is what children need to practice. Think of meltdowns as practice in emotional regulation and the more your child practices the better they will be in control of themselves.

How Temple Grandin Changed My Parenting

2010-09-08T20:15:00.001-04:00

I posted a link to a TED talk that Temple Grandin gave in February on the Parenting Autism Facebook fan page. Then I asked members what they thought of Temple and the responses reminded me why Temple Grandin changed my parenting.

After Tristan was diagnosed with ASD, I drove right to Bear Pond Books
(our local book seller) and guess what they had one copy of Thinking in Pictures. That night I read the book from cover to cover and woke-up with a different thought about how I parented Tristan.

We already knew that Tristan responded to visual cues more than verbal cues, but Temple's description of how a visual thinker interprets the world gave me a greater understanding. I am a verbal thinker, you say "school", I know what you are talking about, my brain does not flip through a Rolodex of pictures of all the schools I have ever seen. But I think Tristan does.

So, I began to shift my thinking to how Tristan may think. The first step we took was to give Tristan more time to process verbal language. If you are a visual thinker, flipping through all those pictures could at first take longer than a person who is a verbal thinker. What we found is that if given a little longer to process Tristan did respond verbally.

Then I decided to make Tristan's world more visual with picture boards through out our house (and at school) to provide some independence to Tristan. He could access the information he needed about dressing, bathing, brushing teeth, getting ready for school, daily schedules, and undressing. Ann, our SLP (speech language pathologist), even made me a bracelet with tiny pictures dangling off so when we were out-and-about I had pictures to use to communicate with Tristan.

The bracelet became essential in diverting tantrums or when I needed to communicate quickly with Tristan. Knowing how Tristan thought leaped me forward to understanding what skills to cultivate in Tristan. Tristan spends hours building with Legos or reading comic books. And in kindergarten Tristan began making his own books, first without words then now with words and even a storyline.

The most valuable information Temple gave me (as a parent) was what she calls the "1950's parenting". How I interpreted Temple's words was that I needed to be direct with Tristan. For example, if Tristan is talking to his classmates at lunch about a comic book and all his friend's non-verbal cues are saying they are not interested. I would say, "Tristan look at all your friends' faces, they are not interested in Spiderman, ask them what they want to talk about." Also, if Tristan doesn't respond to a person greeting him, I would position Tristan's body to face the greeter and have Tristan respond. I think of all this as practice for Tristan.

Time for a change...

2010-04-17T11:30:00.000-04:00

Today is a new day... at least for my blog. For last three years I have been blogging on Blogger and I have finally made the switch to adding these words directly to my website. I think it will be easier for readers to scan the Parenting Autism website for new stuff while also keeping up with my blog. Two different website to maintain made my head spin which sometimes resulted in lack of writing.

So, if you vow to come back here and read my blog, then I promise to write more often. Got to run after some little boys. Hugs, Angela

Parenthood... Is it good or bad for the autism community?

2010-04-14T12:33:00.000-04:00

I love to junk-out on TV. That doesn't mean I actually get to watch mainly due to the fact we don't own a television. Like many other families with kids on the spectrum, we gave away our T.V. after we caught two year old, Tristan watching static. I guess now not owning a tube doesn't stop you from watching shows online which I do a few times a week, but I do find myself having to schedule and prioritize.

Last night I found myself watching Parenthood once again. Parenthood entertains and keeps me coming back week after week. At first I wanted to see how the writers and actors would incorporate the Aspie character, Max, but now Parenthood draws me into the drama of the relationships and struggles families face.

Sure, Parenthood is a Hollywood version of real life and always seems to end the hour on an upbeat. Like last episode when Max received his first home behavioral services and by the end of the show Max had his first play interaction. Not so realistic, but at least the mainstream gets a glimpse of the challenges and joys faced by a family affected by ASD.

Frankly, the most misleading part was in the second episode when Max, who is highly functioning, was asked to leave public school and the parents agreed. First Parenthood sent a message to their viewers that parents are suddenly able to enroll their child in a private school and that they were able to dig up the money to pay. But, the most disturbing part of the story line is that the writers erased the last thirty years of special education law that clearly states that all students are entitled to an education even if the school district must make accommodations.

Instead of portraying parents working with their public school to create an educational environment conducive to learning for their child with ASD, the writers took the bland way out. Often advocating for your child within the public school offers some great stories that the Parenthood writers could have pulled from. Perhaps the writing staff should call some parents with kids on the spectrum to see what everyday life is really like for families.

With that said I guess I will sit down tonight and watch this week's episode and I am sure I will be entertained.

Blueberry Yogurt, really?

2010-04-06T12:27:00.001-04:00

Tristan added a new food to his diet this past weekend. Ya, we are celebrating because I can't even remember the last time Tristan added a new food. I think it has been years. Usually, Tristan discards a food item from his shrinking list of edibles, but his time he added blueberry, Horizon Yogurt Tuberz. Blueberry! Can you believe it? I can't, since Tristan's only fruit and vegetable he has eaten for the last 4 years has been hard (no bruises), green apples. Maybe a red, Macintosh once in a while, but only if hunger hits and we are in an apple orchard.

I can just hear the screams, you are just dying to know his food list. OK, here it is:

Manghi's whole wheat rolls
Chocolate Koala cereal, no milk
beef as a hamburger or in taco corn shells
Vermont Cure breakfast, maple sausages, but only at lunch time
Green apples
Corn chips
Plain potato chips (if we let him)
Pretzels
Veggie Bottie
Plain pasta with soy sauce
Brown rice with soy sauce
My homemade peperoni pizza
Green apple jelly beans (when let him)
Beef hot-dogs no ketchup
Fries

So, there you had it, the fifteen items Tristan will eat. His occupational therapist and a nutritionist have been working with Tristan for about five years to expand his menu choices with minimal change. He plays with food and smells different items (which he loves), but until now the therapy has just improved Tristan gag reflux. Sometimes Tristan will even try to taste the food, but often it ends in a tantrum.

I have a theory on the Horizon Yogurt Tuberz, Tristan can't see what he is eating. In addition the texture is smooth. No lumps, bumps, and-- no chewing. I have tried freezing shakes or fruit to make Popsicles and Tristan refused, mainly do to how it looks.

Perhaps I will wash-out a Tuberz and insert some pureed carrots or strawberries and surprise Tristan. He would probably catch-on to my deception, but it could be an idea.

Kill or not to kill

2010-02-24T09:17:00.004-05:00

When socialite and millionaire Gigi Jordan feed her eight-year-old son with autism a lethal dose Ambien and Xanax, the autism community once again failed. Last night sitting on my bed, phone to my ear chatting with a New York reporter about the latest mother-homicide related to autism and the reporter's words sent a chill down my spine, "...this is such an unusually, sad case."

Not really. Days after police were barging into Jordan's $2,000 a night hotel room, a grandmother in Coney Island locked her 11 year-old grandson with autism, alone in their house that caught on fire and killed the boy.

The unusually situation is not that a millionaire, mother thinks autism is causing her son pain and she decides to end his life and suffering, it is that we don't read about it or talk about it. All to often parents end parental rights or murder because autism can drain hope and reality right out of parents (of course, with the right dose of sleep deprivation). The one-time, quick-fix autism cures don't work and lead parents and grandparents down a path of despair when their child doesn't get 'better'.

Add the lack of federal funding for respite care and proven, effective interventions and parents can find themselves spiriting down the road of giving-up their child to the state or even murder. I am not condoning what these two women did or others who act similarly, but we are not giving parents practical resources to help develop a everyday that the whole family can live with.

Foremost parents need to value their own physical and mental health and know the warning signs that life is getting desperate and help is needed. Then where to go and how-to get help. Friends and family members also need to evaluate the health of primary care providers (mom and dad) to ensure everyone is getting the respite they need.

Growing a child with autism into a happy, productive adult takes many layers of family members, professionals, educators, and care providers over the lifespan of the individual.

Time-Out Strategies

2010-02-05T14:12:00.004-05:00

Yesterday, I was chatting in the hall at school with a mom (of kid with autism) about discipline and guess what? She admitted that she only disciplines her typically developing children, not her child with autism. Since this was the third conversation about disciplining kids on the spectrum in the last three days, I thought this would be a good place to discuss the ins and outs of discipline strategies.

Today, I am just going to talk about how to effectively use a "time-out" for young (1-5) children with autism. First, if your "time-out" strategy has failed in the past, change the name and place (we actually call our time-out, break time) for a fresh beginning.

Set-up your time-out chair. Whether you use a chair or a bean bag or a step, keep it consistent and easy for your child to take a break and re-group. For children with sensory issues which makes sitting more difficult, try placing a Gymnic Disc in-between the child and the chair; it will give some sensory stimulation while allowing your child to sit longer.

If your child is a visual learner take a picture of your child sitting in the time-out chair, print out the photo, and tape it to the wall just above the time-out chair. Write "Time-Out Chair" below the photo to add another support. The photo will reinforce the proper behavior and remind the child why they are taking a break.

Free the time-out area of distractions; for example: clear toys away, turn-off the Ipod or the T.V., and allow your child time to re-group, so he will be available to make better choices.

Use a visual clock with timer so your child can see how long they need to sit. Typically one minute for each year of life, but children with autism might need to practice to sit in a chair for five minutes if they are five years old. So, begin with one minute and work toward the five minute goal. Keep the clock out of reach of the child, but in visual proximity. Now that your time-out chair is set-up and ready for use, now what?

When we are discussing time-outs (or discipline in general) often parents are ones that need the rules. We can get emotional and forget that we are teaching proper behavior and explode into a fast talking, babbling fool that our children can't understand. Here are some guidelines to follow for success:

* Be patient! Re-frame the situation. For example: Your child wackes you on the head with a plastic hammer and it really hurts and all you want to do is scream and jump up and down. Instead, breath, count, leave the room for a moment; whatever it takes to calm yourself down. Remember you are modeling proper behavior.

* Get down to your kid's level! That is right— bend on down, sit on the floor, slow down your rate of speech, and in the least amount of words give them a WARNING— "No hit mommy or time-out."

* Focus on your non-verbal communication! If you want your child to know you are mad, show them mad on your face, and in the tone of your voice. Slow your rate of speech, lower your voice tone, and put on your mad face.

* Follow through! If you have given a warning and the undesired behavior continues, it is time for a time-out. No excuses, it is teaching time.

Sit your child in the time-out chair.
Explain why they are there, for example "You hit mommy."
Tell them to sit in the chair.
Set the timer for a reasonable amount of time; remember you may have to increase the time as you practice the time-out.
If your child gets up, return them back to the time-out chair without using any language.
When the timer has rung re-explain to your child the reason for the time-out.
Hug child and go play!

* Start young! Kids need practice and the sooner you develop a discipline plan and stick to it, the better. Be proactive, think of teaching proper behavior instead of correcting poor behavior. Remember kids with autism are FIRST KIDS so like any other child they need boundries, consquences, and understanding.

Survival

2010-02-03T13:53:00.005-05:00

I am back! After four months of healing from falling fourteen feet off a ladder and fracturing two vertebra and shattering my heel, I am beginning to reshape my life and getting back to writing on the Parenting Autism blog. My first professional step forward... many other steps taken (literally), with help of physical therapist, I am learning to re-walk.

While laying on the couch (my bed for eight weeks since I could not climb the stairs) my parenting plan of organic, whole foods and after-school activities like swimming, Lego club, art class, gymnastics, and karate exploded into hours of watching movies and eating cereal and toast for breakfast, lunch, and dinner. Our after school plan was simply:

1. Roll my walker with one foot while sitting on the bench, that clearly states "Warning DO NOT attempt to sit on seat while moving", from couch to front door.
2. Get coat on and open door.
3. Roll walker out on the front porch and sit in the frigged, Vermont Fall.
4. SMILE!
5. Wave at kids and moms that are helping Tristan and Dylan off the bus.
6. Kiss Tristan and Dylan.
7. Inquire about their school day; trying to pry-out more than what they ate for lunch.
8. Open door and roll back into our house while reminding the boys to pick-up their backpacks, coats, and shoes off the floor, so I can get back into the house.
9. Sit at the door, yelling, "I can't get through with your stuff all over the floor."
10. Roll through the living room dodging any dropped toys, books, food, and collapse on the couch.

The above mission would take me about forty-five minutes to execute. After an afternoon nap I would lift my head long enough to help Tristan and Dylan with homework-- no executive functioning plans on how we would set-up our afternoon, straight and simply-- survival.

At first, the voice inside my head screamed that I was ruining my children-- Tristan would slip into his old patterns of reciting entire movies and only eating Veggie Bootie and pepperoni, Dylan would not learn to read by the end of kindergarten, and Liam since he was only two (almost three) would turn into a swearing, punching, kicking preschooler with the corruption of Stars Wars and Harry Potter.

Well, I can report four months later that Tristan, Dylan, and Liam did not spiral down into children that were feared by me and every other person. Instead, Tristan learned how to put the dogs "away" in their crates (so, not to eat their food) and how-to pour cereal and milk into bowls. They all learned to put away their clothes, dress, bathe, and brush teeth independently. Liam learned to sleep next to me instead of with me.

And I learned more in the last four months about life than in my prior thirty-five years and I hope to scribble some of those thoughts to you.

Last Thought:

Pause your life, right now. Take a deep breath into your soul. Thank yourself for all you have done and inquired. Be grateful that air can pass through your lungs and that you have this moment. Namaste.

Read This...

2009-11-09T11:54:00.003-05:00

I recently broke two vertebra and shattered my heel, now I am recovering and writing about that process at http://brokenmommy.blogspot.com/

Please come and enjoy the journey. Thanks, Angela

Finding A Balance

2009-05-19T09:52:00.003-04:00

As I was rolling out the pie dough last evening, a voice of a sibling of an adult with autism was being interviewed. The thirty year old man talked about how his childhood revolved around his non-verbal brother and how the family life was decided on one factor, his brother. Whether the family went on a trip or went to the store was all based on the brother and as I listened the words spoken faded away and all I heard was anger.

Anger over not having a typical childhood, anger over not getting attention, and anger now about soon having to care for his brother. My husband, Peter (who was also listening to the radio interview) chimed in and said "that was interesting, don't you think?" Still rolling the pie dough, I stopped, and said, "No, i think it was sad."

Sad because I could feel the negative energy flowing through the radio; I almost turned off the radio in the middle of the interview. As I listened more, I reminded myself of all the families I have met and how hard they are working to balance family life.

We have come so far in creating a family life that supports all members, however the interview made clear how important it is to not make autism the center of the family. Sometimes that may mean deciding not do a therapy or an autism event, so that the whole family can thrive not just one member.

In thirty years I want my children to reflect back and remember the camping trips we took, the special movie nights, or the hikes in the forest, not us running around to this occupational therapy or that speech therapy appointment.

Effective Agenda for IEP meetings

2009-05-19T09:49:00.002-04:00

Meeting agendas are a useful tool for any meeting and it surprise me every time I hear that they are not being used or not being used properly for IEP or team meetings. In the Build Your Family workshop I teach how to set-up a productive meeting and the first step is the meeting agenda.

Agenda ideas can either be gathered at the last meeting you had or through email. Since this would be your first agenda, email all the team members for agenda ideas. A simply, friendly email like:

Hi everyone,

I would like to make sure we cover all the areas we need to address at our next meeting, so I am going to make-up a agenda to follow. I know you all have so much on your schedules, so the agenda building can be my job. Please send me all your suggestions by (insert a date).

Thanks again for all your help,

Now, it is time to organize an agenda that you can use each month:

IEP meeting for ________________
May 19, 2009
Room#12, Elementary School

We work hard to start the meeting on time, people come as soon as they can & they will inform the group if they need to leave early at the beginning of the meeting
We allow people to finish speaking
We are respectful of one another in discussions of children, adolescents & adults with ASD, their families, & the professionals, programs & agencies that work with them
We actively solicit diverse ways of looking at things
We use person first language (e.g., child with autism versus, autistic child)
We recognize when more information is needed before a discussion can proceed
We clarify actions that need to be taken, by whom and when
We collaboratively determine agenda items for a meeting and important topics that should be discussed as a group
We revisit our norms periodically and make changes as needed**

10:00-10:10 am — Angela will greet everyone and give updates about Tristan.

10:10-10:40 am — Review goals for IEP and make any changes.

10:40-11:00 — A discussion about need for an outside specialist to come work with Tristan and the team on reading.

**These norms are taken from the Vermont Autism Taskforce agenda.

Help Us Build a Better Program

2009-05-13T14:12:00.003-04:00

I have been hearing a lot of frustration and pain out there over school related issues. Some of the stories told to me by parents have sucked the energy right out of the parents leaving a shell; not a great place to parent from. It seems to us at Parenting Autism, school related issues tend to be a huge obstacle to getting on with your life; they drain time, energy, and resources.

So, how can you move forward when all the players (the school) are not willing to help get there. The portion of our Build Your Family workshop that focuses on developing an Inclusive Team of Professionals has been so popular we are expanding it. So, we need your help to make it better, please take two minutes (really that is it) and fill-out this survey

Pass this link on to your friends, co-workers, neighbors, and family who have children on an IEP (the child does not have to be diagnosed with autism). The more data we collect the more information we have to help shape a new program for parents and educators.

Will You Be My Friend?

2009-04-15T12:25:00.001-04:00

As all kids on the autism spectrum, Tristan has a difficult time with social skills. Often Tristan’s words fail him or he has a hard time retrieving the words fast enough to react to his classmates. When there is break down in communication Tristan sometimes (not always) gets frustrated and puts his hands on the other kids face. Quickly, he is able to regain himself and apologize and move on (often without teacher redirection).

Last year this scenario happened daily or even several times a day until we (home and school) used video modeling. We used video modeling to instruct Tristan how to stand in line without touching the other kids. First, Tristan was video taped in line touching the other children (not the desired behavior). Then the other kids lined-up slowly, one at a time, placing their arms down, and hands by their sides (desired behavior).

Tristan watched the video at home and within weeks the behavior switched from undesired to desired behavior. Since, we have used video modeling to help Tristan understand social situations like how to negotiate when he wants a toy that another child has. We have even used video modeling to teach Tristan the ABCs. Letters held no importance to Tristan until we placed them with a person or object that had meaning for him, like M for mommy (picture of me).

I think it is time to revive video modeling to teach Tristan some complex social situations like creating friendships. Often Tristan will suggest a play scenario like let’s build with Legos and his friend says no let’s play soccer and Tristan says “no, I don’t like soccer”, then he walks away. Instead of Tristan saying:

“How about playing Star Wars?”
or
“Ok, soccer now, Legos later.”

Tristan’s IEP goals and our parenting goals reflect social development; however sometimes they can become overshadowed by academic objectives like learning to read. I find myself reminding his school team that Tristan will be a successful read and writer, but right now, his peers are willing to practice social skills with him and as they grow older they will probably lose interest.

Tristan will need more time decode and navigate the social scene, so giving him as much time now when he and his peers are young to practice will help not only Tristan, but probably the entire class.

What is Your Plan?

2009-04-11T19:58:00.001-04:00

As parents our number one job is to grow our children into adults and kids on the spectrum need more time and practice to master the life skills needed to have a productive, meaningful life. So, what is your plan on teaching your child… do have one? Parents with children with ASD spend hours pouring over IEP goals and services, but how much time do you devote to your parenting plan?

In my workbook and workshops, I teach parents how to develop a parenting plan based on your family values and what is important to you. Your parenting plan can be as basic or elaborate as your need it. Depending on the age of your child and their needs your parenting plan might be focusing on bathing, and identifying clean and dirty clothes, or grocery shopping and practicing making dinner.

Last year Peter and I decided that we wanted to establish a daily bathing schedule along with identifying a pattern for clean and dirty clothes. We taught Tristan that everyday he needed to shower which included instructing him how to wash his body and hair. To go along with bathing we taught Tristan that everyday he needed a clean shirt, underwear, and socks, and every second day he needed to change his pants.

First, we used picture boards to explain the steps and slowly we took away the supports. We have picture boards on the dressing sequence (1. underwear, 2. pants, 3. shirt, and 4. socks), showering (1. wash face, 2. arms, 3. legs, 4. bottom, 5. penis, 6. mid-section, and 7. hair), and the morning routine (1. undress, 2. shower, 3. dry-off, 4. get dressed, 5. floss teeth, 6. brush teeth, and 7. go down stairs).

Tristan took about a year to master his morning routine; some sections took less time to teach than others. Now, Tristan does his entire morning by himself… he even gets his backpack ready for school!

Our plan for this spring and summer is to teach Tristan to walk up our street by himself to a neighbor’s house. We have been practicing since the snow has melted from our street— the other mom stands at the end of her driveway and I pace at the end of mine and Tristan walks to the other house.

We review street safety with Tristan including walking on the side of the road (no sidewalk) and keeping your head-up so you can see cars approaching. I use direct language, like “head up, look for cars, and stay on the side of the road”. I make the language and instructions as simple as possible. Peter and I figure that by next spring Tristan could be able to walk the street without us supervising.

One of our overall parenting goals for Tristan (and Dylan and Liam) is to give them all the skills they need to be independent adults. What we have realized is that Tristan needs more supports and more time to practice the life skills we are responsible for teaching and developing, so we decided to begin earlier than later.

When Tristan was in my womb I never imagined the depth of parenting we would take on and sometimes it does seem overwhelming and frustrating, but we made a choice to be parents and you can never predict how your life will unfold.

Autism Awareness Month-- Parenting Autism Workshops

2009-04-01T10:50:00.002-04:00

Today marks the first day of National Autism Awareness Month and the people here, behind-the-scenes at Parenting Autism decided we wanted to give back to the Autism Community by offering a FREE parenting workshop on every Saturday in April. Parents from all over Vermont and one family from Quebec have been calling and emailing to register.

As we get closer to our first workshop in Burlington, VT this Saturday the buzz of excitement grows because we know families are not getting enough support which results in splintered families, families that don’t work, and relationships that don’t flourish. We want to help you create a meaningful family while preparing your child(ren) for adulthood. Sign-up today at angela@parenting-autism.org

Burlington, Vermont Workshop
Saturday, April 4th, 2009
8:30am-12:30pm (light fare provided)
MAIN STREET LANDING PERFORMING ARTS CENTER
The Great Room
Corner of Lake & College Streets
Sixty Lake Street
Burlington, Vermont 05401

Rutland, Vermont Workshop
Saturday, April 11th, 2009
9:30am-1:30pm (lunch provided)
RUTLAND FREE LIBRARY
The Fox Room
10 Court Street
at the intersection of Court and Center Streets
Rutland, VT

St. Albans, Vermont Workshop
Saturday, April18th, 2009
9:00am-1:00pm (lunch provided)
NORTHWESTERN COUNSELING AND SUPPORT SERVICES
130 Fisher Pond Road, St. Albans, VT
(the new building)

Norwich, Vermont Workshop
April 25th, 2009
10:00am-2:00pm (light fare provided)
UPPER VALLEY EVENTS CENTER
Route 5 SouthNorwich VT

Here are some highlights from our workshop, Build Your Family:

After Diagnosis: Grief, depression, anxiety, sadness is a host of emotions that a family must continue to face throughout the lifespan, not just after diagnosis — we help with dealing with emotions and how to make plans to move forward. Including connecting to your community to gain a support network and find “your people”.
Build An Inclusive School Team: Through strong team building skills and meeting planning we teach you how to have a working team at school and at home.
Create Your Family: What are your family values? How does your life support the family values? Learn how to create a weekly family meeting, family dinners, and family outings for everyone.
Your Child: Learn how to prepare your child for a meaningful and productive happy adulthood now at whatever age they are. Teaching life skills in way your child can understand.
Medical Issues: Learn how talk to doctors so they will understand. How does pain affect children with autism and what you can do to help?

The Circle of Crisis

2009-03-24T14:20:00.000-04:00

I talk about the “circle of crisis” in my workshops or here on my blog, but I have not actually sat-down and explained the term. I see the circle of crisis as when a person, a family, an organization, or even a company can’t move forward — even the most simple task as calling a doctor becomes to overwhelming. You are consumed with either the anxiety of the future (how will my child survive without me as an adult) or too focused on the past (what-if my child had more intervention when my child was three) to work in the present.

Emotions get tied around the task at the present moment and become too difficult or too overwhelming to accomplish and the circle of crisis keeps revolving. Often times the task whether it is revising IEP goals for your next meeting or calling about a hearing test takes much less time than we think, if can step-out of the circle of crisis and into a peaceful state that lives in the present.

By jumping off the train of crisis you can deal in the moment and leave the future what-ifs to the future. Some strategies I discuss in my workbook and workshops are writing down steps to the task you wish to accomplish and taking the emotion out of the task-at-hand. Whether you feel sad, happy, guilty, mad, or frustrated, deal with the feeling by acknowledging how you feel and allow yourself to get back to a state of peace. Take a walk, call a friend, sit quietly— whatever it takes to get YOU back then tackle the task.

Live Now

2009-03-19T21:54:00.002-04:00

Do you live right, now? I mean— are you present in the moment of now? Present in what is happening at the present — not the future or the past — but the now. Yes, it is a difficult task to not project forward to potential prospects or not dwell on what has occurred in your history. Take a moment — look around — what are you missing? Your children dancing around the living room to the latest tunes from your IPod or your spouse glancing at you with loving eyes or a phone call from a long-lost friend, what is more important — what you need to do to get to the next thing, event, or item on calendar or the now?

I challenged myself to living in the present; to take every opportunity that happens in the moment. The other night I snuggled on the top bunk with Tristan as we looked through one of our Waldo books I thought nothing of the piled-up dishes in the sink or laundry to add to the washer, I stayed focused on finding Waldo and guess what? We had a blast, not only did Tristan and I have fun, but we connected. Tristan knew all my energy and thoughts were on him and the activity, not on the steps of the evening or tomorrow’s phone calls.

Who knows what tomorrow will bring maybe you will win a million dollars or get hit by a car so spending all your reserves on the future or the past robs you of the present. After Tristan was diagnosed with autism I spent hours and perhaps even days at a time, researching and analyzing how Tristan could have gotten autism. I remember sitting in my warm car looking out at the children playing on the beach while Tristan and Dylan sat strapped into their car seats, so I could take a call from a pharmaceutical representative about a vaccine Tristan received two years earlier. Instead I could have been at the beach playing in the sand with my kids and living because whatever was said on the phone did not matter. What happened two years earlier did not help me or Tristan then or even now.

So, go live for the present. Challenge yourself to live an hour or a day or even a week in the now. See what the results are if you shed the baggage of the past and stop analyzing the future. Perhaps you will find what I have found — PEACE.

Was Liam Switched at Birth?

2009-03-11T12:23:00.001-04:00

This kid is not mine! I know he looks just like me with his round, blue eyes and fair skin, but he talks. No just two year old babbling, Liam communicates! Even with gestures like finger waving when his brothers have bop him over the head and long sentences about friends at school and what he wants for dinner.

Other people even understand him; I don’t have to interrupt every single word that comes out of his mouth. I have been repeating word for word what Tristan (son #1) and Dylan (son #2) have said for the last six years... now I just stand next Liam as he belts out 1,2,3,4,5,6,7,8,9, and 10 and everyone understands him.

Tristan (son #1) has autism and Dylan (son #2) has a speech delay, so getting a kid that was meeting all the developmental milestones was highly unlikely with our gene pool. Oddly enough Liam is text book two year old (over the past seven years I have memorized all the “expert” parenting books), huh… I don’t understand how this happened.

So this is what it is like when your kid is “typical”, you play and talk about school and friends and what to make for dinner. You mean I don’t have to guess what you want for dinner or what clothes you want to wear or try to understand why you are crying. This is a strange world to me— no picture boards are needed and Liam tells me what he wants, no guessing.

Last weekend I dragged out the seven year old flash cards that I bought for Tristan (before diagnosis) because that was what “good” parents do, right?...quiz your eighteen month old about what they see on the card. Well, I have had years of failed attempts which ended ninety percent of the time with Tristan or Dylan eating the flash cards.

So, the flash card have been on the shelf with all the craft supplies (another lost cause) and I thought why not, Liam is clearly beyond eating them so why not try to expand his mind. Guess what? Liam loved them and carried them around saying what was on the card. For years I had listened to my friends discuss the development of their children and Tristan and Dylan never fit their descriptions.

It also seemed like my friends (no offense) would worry about the smallest things like whether or not to give their precious two year old Tylenol when they were teething or what kind of bathing products to use. But I guess when you are not anxious that your two or even three year old has no functioning communication those are the things to fret over.

This parenting thing is easy (I mean for the typically developing kiddos)— no speech language pathologists, occupational therapists, play therapists, special educators, and psychologists daily, tramping through my house. I say a new word and Liam repeats it and seems to understand it. Wow, this is like having a first born child again… I mean totally different from the last two. I wonder, am I qualified to raise a child with no developmental delay? Well, I guess we will find out; what a great adventure I am on.

Free Yourself

2009-02-28T08:10:00.003-05:00

"1, 2, 3, 4, 5" Liam counts and then jumps from the dining room table into my arms.

"Mama, more please?" shouts Liam.

"OK, one more time, then no more jump." I say with my best "I mean business" look.

Most use their dining room table to lay out their best linens and grandma's china and of course practicing eating without drooling, but not us. We do sit and eat every meal at our dark, wooden, eight seater, but through out the day the boys could be standing side-by-side on the table performing the song "open shut them" or sliding to the tunes over the radio.

We do have rules and expectations for our children like no feet on the table while we are eating and everyone cleans their own dishes, but Peter and I have own guidelines to the stuff in our home:

We never buy anything that is not well produced and sturdy.
All the upholstered furniture can be machine washed or covers can be reasonably replaced.
We don't purchase furniture that we will cause a "great depression" (emotionally or financially) if damaged. We are saving our artisan crafted furniture buying for when our children have their own off-spring.
Finally, it has to look good! No frumpy, saggy hand-me-down furniture (when I was pregnant for the last time with Liam I drove all our furniture to the Salvation Army... more about this later).

I don't spend much time yelling at our three,"monkeys" about jumping on the couch or building a fort with the sofa pillows. Instead I can spend time encouraging their bonding and exploration while I get to sit back and check my email or Facebook page without feeling like I have to monitor the boys' every move.

Ask Angela

2009-02-17T15:54:00.001-05:00

Ask Angela

The Ask Angela section is printed in th Parenting Autism newsletter every month, so send your questions to angela@parenting-autism.net.

I have recently received a bunch of questions regarding potty training. I am not a master at this, I am actually pretty lazy. I don’t push my kids and Dylan and Tristan were both potty trained after the age of four. However it didn’t take much time once they were ready. To prepare for potty boot camp I (or sometimes someone at school) created a picture board with the sequence of pottying. Since Dylan can be very sensitive to having his own stuff, Dylan’s teacher made a picture board with his picture and name.

So, in our bathroom we have two picture boards— one for Tristan and one for Dylan. In the beginning of potty boot camp I will explain that I am not buying anymore pull-ups and they will pee and poop in the toilet. I give them the rules and the directions to follow and if it is all done according to plan a reward is given.

Now, they follow each step without prompting or help (or reward). Having everyone involved in the potty boot camp is the key to success— school, family members, and etc.
With both Tristan and Dylan I thought they may enter kindergarten in pull-ups but to my surprise they potty-trained within a weekend without much effort.

The keys were: being ready, visual supports, and a good reward (and maybe enough laundry detergent). Good luck!

Begin with a Smile

2009-02-17T14:26:00.004-05:00

Last week I was driving along the zig-zag roads that climb and descend the Green Mountains to a Build Your Family workshop that I was giving to a bunch of parents. During the drive I replay my six hour workshop in my head, sometimes quizzing myself about the sections and going through the possible questions I would be asked. I do all this to squash the fear that someone may fall asleep as I explain the need to come to an understanding of your own fears, anxiety, and sometimes even depression before you can truly move forward to preparing your child for adulthood.

After each workshop I give, I call Peter to report how many sleepers I had. To my credit I have only had one attendee fall asleep and that was a medical student during a lecture about autism. At this workshop the conversation turned hot when discussing IEP meetings and the attendees scribed pages of notes. So, I thought this would be a great topic for a newsletter.

I been to many workshops about special education law and the IEP process which I think are all valuable resources and information every parent with a child with special needs must become educated in. However, what I teach during my Build Your Family workshop revolves around behavior— your behavior and the school’s behavior. As a parent you have to know the special education laws to advocate for your child, but how you advocate can change the outcome.

First thing, the only person you can change is YOURSELF. You are going to be in a losing battle if try to change other people. However, you can change how you react to people.

When talking to folks about setting-up an IEP or team meeting, people will tell me, “Well, I have my folder on special education law and I know my child’s needs.” And I will say, “Ok, so what is the first thing you do when you walk in the room?” I always get the look, like “this lady is crazy.” How you walk into the room sets the stage for the entire meeting.

So, next time you have an IEP or team meeting, try my beginning meeting strategies:

Get there early or at least on time.
Leave your emotions at the door. Try to separate the emotions from the tasks at hand (I will write more about this later).
Walk in with a smile on your face and look everyone in the eye as you greet them.
Sit at the head of the table (you are the meeting facilitator).
Bring a recorder and place it on the table and turn it on; so you can listen and engage everyone and still have “notes” from the meeting.
Bring an agenda of the topics to be discussed (email then to the team in advance to have everyone able to participate and bring copies for everyone).
Begin the meeting by thanking everyone for coming and working with your family.
Ask everyone to stick to the topics on the agenda so you can finish the meeting on-time.

After the meeting, process how the other team member reacted to you, were they more or less responsive through out the meeting? Did you work toward bettering your child’s educational experience? Was there less or more struggle? Did you feel accomplished and heard?

Next week I will discuss other ways that behavior can dictate your IEP or team meetings.

Back on Track

2009-02-10T13:03:00.003-05:00

Sorry I have neglected you again. I can make excuses, or show you my filled calendar, or plead for your forgiveness, but I think I won’t. You all know how it is when your household revolves around all your commitments and then at night when I should sit down at the computer and tell you about my latest adventure, I fall asleep! Right there in bed with a kid and a pile of allergy infested dust-mite collectors (Dylan’s loveys Snowy 1, 2, and 3), my only alone time taken by sleep.

Well here we are mid-February and currently no one in our house is sick, but that could change at any moment and by tonight we will all be praying to the porcelain throne. Since we veered into the realm of viruses I will add my tips to surviving a sick household.

When you are healthy cook some chicken or turkey soup to freeze for the moments when your family has been kidnapped by germs (see recipe below).

Buy an additional waterproof pad for the bed (not fitted). It looks like a waterproof top sheet that you can throw down on top of the bottom sheet. I find it especially helpful when I have already changed the sheets once and I don’t want to change them again. If you are lucky the vomit will stay right on the waterproof sheet and underneath is a clean, dry sheet.

Keep a bottle of white vinegar and Borax in the laundry room. I don’t scrub or rinse. I just add a cup of white vinegar and a cup of Borax to the laundry detergent and wash with warm water. It will get out all the smells and stains.

Stack-up old towels in an easy to access (when kids are vomiting) place, so you are ready for clean-up.

Store a box of crackers in the pantry for the patients. It saves a trip to the store with sick kids.

REST because if you don’t you will be the next to be feeling the pain.

Angela’s Chicken Soup Recipe

1 whole chicken
3 cloves of garlic (chopped)
6 stalks of celery (chopped)
5 carrots (sliced)
3 onions (chopped)
1 bag frozen corn
1 pint of mushrooms
1 teaspoon tarragon
1 teaspoon celery seed
1 bay leaf
Salt and pepper to taste
1 tablespoon of lemon juice
1 tablespoon of soy sauce

Directions: Preheat the oven to 450. Place the whole chicken in a roasting pan and massage the chicken with olive oil and salt and pepper. Place the chicken in the oven for 1 hour to 1 ½ hour depending on the size; continue until fully cooked.

Pick all the meat off the chicken and set aside. Place the bones and fat into a large pot and cover with water and ¼ cup of salt. Place on the stove on the highest temperature until it boils. Continue to cook for 2 hours (more if you would like) and add celery ends (leaves too), one carrot, one onion. Cook for another 40 minutes, then strain the broth out into a bowl and set aside. Compost vegetables.

Place the large pot back on the stove on a medium/high temperature add olive oil and sauté 2 onions and 3 garlic cloves until light brown. Then add carrots, celery, mushrooms, and corn and simmer until cooked. Add tarragon, celery seed, bay leaf, salt, and pepper to vegetables and stir. Then add the reserve broth, lemon juice, and soy sauce and simmer until warm. Serve or store in the freezer.

The Holidays and Autism

2008-12-03T12:45:00.003-05:00

We have come a long way from Tristan hiding under the table at holiday parties (or any gathering more than just his immediate family) and grabbing guest’s legs as they entered his space. To an onlooker Tristan’s behavior might have seemed childish and fun, but not to me I saw years of parties with Tristan hiding. So like anything else in Tristan’s world we began teaching him how to behave appropriately at a party, not that we expected a chatty preschooler who stood-up and sang his favorite tune, but we needed him not to run under the table and pull down the tablecloth to hide behind.

Any party can be stressful for children with ASD, but I think the holidays offer a whole new bag of surprises. Expectations are high, change is present, and the anxiety (good or bad) can bring Tristan tumbling down. During the holidays our worlds are whipped up on high-speed — think of all the change that just happens at home.

We celebrate Christmas, so a tree moves in and just as Tristan is getting adjusted to the smell, the space it takes up, the lights, and all the decorations, the tree is discarded in the compost pile. Then anxiety of the actual day of Christmas, everyday until Christmas I will be asked, “Is it Christmas, today?” Then all the preparation— the tree, the cooking, the parties, comes to a halt and people invade our home to enjoy our yearly Christmas day open house.

Now Tristan has learned to entertain our guests instead of hiding, but has opportunities to escape if needed. Tristan might even give a holiday smooch, if you are a patient.

Tips to making your holiday the best ever:

Teach your child the appropriate way to act at a party. You might begin slowly with the child sitting on your lap or in a body sock, but being with the crowd. Then work towards interacting with the party-goers — my favorite trick to getting Tristan to be social at a party is to give him a job like handing out drinks or passing around appetizers.

Write a social story about the party or about the holiday, so the child knows what to expect.

Give a movie break, if you see anxiety level rising.

Make a holiday calendar to mark special events like going to buy a Christmas tree or school play or party. Don’t forget to mark when the tree is leaving the house.

Keep everything simple and then it will be less overwhelming for everyone.

Relax, if you are stressed likely your child will be stressed, so kick back and enjoy your time with your family and friends.

The Holiday Season is Knocking

2008-11-11T09:35:00.004-05:00

As we trotted down the front steps to our blue mini-van the snow flakes twirled around our heads landing on the leaves and melting, but soon the white puffs will stay and our home will fill with a balsam fir and smell of sugar cookies. With a grin across his face, Tristan lowered his voice and asked, "When will Santa come?"

As much as Tristan loves the holidays it does bring a bag of anxieties that we need to sort out like relatives wanting to chat with him about school and all he wants is to discuss the Star Wars movies while hiding behind me. Not to mention the hugging and kissing. I think Tristan wants to participate in the ritual of affection, but has a difficult time crossing over from wanting to doing. While his brothers bounce from one lap to another giving-out hugs and kisses freely, Tristan usually sticks close to my side guarding against any surprise attacks.

We have made improvements in the last few years, I remember one family celebration that Tristan spent the entire evening under a serving table and when anyone came near he would fend off the advances with a kick. That was before Tristan really had any meaningful communication and before his sensory system was regulated.

Now we have strategies:

We try and down play the holidays because the build-up to the event can cause more anxiety then needed. One year, Peter and I did not tell Tristan it was Christmas until the night before.
We scale back on all the family gatherings and everyone is invited to our house on Christmas day so that Tristan has all his supports.
Unless the kids bring up Christmas we don't really talk about it.
We don't have a TV, so our kids don't get all the commercials about Christmas.

In the end we try to enjoy all the rituals leading up to the holiday season like hiking and finding the perfect tree to cut down and bring home or the stringing of our outdoor lights. We create little events throughout the two months that are just as exciting and special, but have less stress involved.

Cast Your Ballot for a Package

2008-11-03T14:04:00.001-05:00

The day before the election and all my people (the folks that will admit that they are my friends, colleagues, and associates) are not breathing, they are panting with anxiety. Perhaps government officials will have to pump Prozac through the water system to just get people out of bed and to the polls and work.

Why are people in such a frenzy? Well, the economy crashed into a deep underwater recession which means job security is under siege and our retirements disappeared along with many people’s homes. Top this off with the balance statement of the war (both lives loss and the dollar amount) and our country finds it self in a downward spiral.

I have read and hear some say that they are going to vote for a candidate because they have talked more about autism and I say don’t vote for one issue, cast your ballot for a package that will in the long-run help your family and your community. As much as all of us in the autism community want more funding for research to find a cure for autism, let’s be realistic whomever gets the Oval Office will not be spending much time or resources on autism until workers are back on the job and home foreclosures reduce (some are families affected by ASD).

The United States needs a leader that will act quickly to restore and strengthen our economy, but also one that will build-up the people including people diagnosed with autism. Talking about funding more autism research is just one piece, what about upholding the federal government agreement to help fund special education or increasing the budget for Head Start programs?

If the federal government coughed-up the money they agreed to pay for special education (about 40% of the bill instead of just under 20%) not only will our children be gaining but our towns in lower educational taxes. Think of all the issues that impact your family from job security to healthcare to education and then mark your ballot.

Remember Barack Obama voted to increase the funding for special education and Head Start (S.Amdt. 2292 to H.R. 3010, Vote 273, 10/26/08; AFT Voting Record for 109th Congress, accessed 7/1/08) and to insure millions of children through the SCHIP program (H.R. 976, Vote 307, 8/2/07; S.Con.Res. 21, Vote 172, 5/17/07) while his opponent John McCain voted against families (S.Amdt. 2254 to H.R. 3010, Vote 272, 10/26/05; S.C.R. 23, Vote 86, 3/25/03; H.R. 2660, Vote 333, 9/9/03; H.R. 1836, Vote 154, 5/22/01).

For give me... please?

2008-11-03T11:17:00.000-05:00

I apologize for not posting a blog entry in awhile — two things have been happening in my life: one, all family members have been dripping with cold germs including me (it always takes me longer to shed the microbes) and that we have exciting progress at Parenting Autism that I will be telling everyone about soon.

Spiraling Down

2008-10-21T11:58:00.001-04:00

In these unpredictable economic times, I pondered the question, how are families with children with autism paying their bills and providing for their families? I asked families all over the country to email me to telling me their stories of surviving the economic down-turn. In no way is this article a scientific evaluation of family income or lifestyle, just an overview of what is plaguing our country.

According to the 2000 Census report more and more families rely on two incomes to stay in the middle class and what my interviews uncovered was that families with kids on the spectrum often don’t have two full–time incomes due to caring for their child. Before the age of three it is often difficult to find and retain appropriate childcare for children with autism and then after the age of three your child should receive services through your local school system, but usually not enough time for a full-time job. Along with the intensive caring and re-enforcing behavioral therapies, many parents are their child’s case manager — dealing with doctor consults, educational programs, and home therapies which results in many meetings, emails, and phone calls every month.

What I found were that parents often work split shifts, so one person can always be home with the child with autism or be able to manage the doctor’s appointments, therapists, and meetings. The financial and emotional stress can be daunting with families left unsupported. Other families live on one income trying to live from paycheck to paycheck, giving up taking the kids to movies (not to mention a night on the town) for gluten-free, casein-free bread for their child with autism or occupational therapy or medical care, all things these kiddos need to thrive. Parents that make the choice to have one parent stay-home with their child often end-up here not because they want to be a stay-at-home parent, but because there is no other option.

As a result families plunge into financial distress with their relationships following — who can really endure a child with special needs, economic uncertainty, emotional stress, and workplace demands along with maintaining a concrete marriage. The American Autism Society claims that over 80% of the families affected by autism result in divorce. Combined with the stats from the Census report that women are 50% more likely to spiral down into poverty after a divorce, this paints a bleak picture for all families. We need more funding to be allocated towards strengthening autism programs, respite care, and professional training to help the entire family not just the child.

While I read emails from parents, I often think we are, the United States, the richest country in the world, of course we can pay for special education or healthcare for all or job coaching or even appropriate daycare for all children regardless of age and abilities, we chose not to (support these programs). However, I believe we won’t get there without political will and people saying “no, our tax dollars should not be spent to make the rich richer, but help all our citizens.”

Part Three: How we got here...

2008-10-15T15:44:00.009-04:00

This blog post is the third part of a three part series, so if you would like to read the first part click here, Autism Speaks, Jenny McCarthy, and others, thank you, now let's create an inclusive movement and the second part is here, Let Me Explain.

Let me apologize for not posting last night... I forgot it was debate night and I obsessed with watching the body language of the candidates that I fell right to sleep. More about the debate later.

As for where I left off, I received Tristan's vaccination records along with his general medical records and after studying them I found that within 24-36 hours after each vaccine Tristan was back in the doctor's office with more abdominal pain and lack of sleep. Explanation for Tristan's autism diagnosis, I don't know, do I think that Tristan was harmed by vaccines, I don't know.

Tristan could have been exposed to all sorts of toxins through everyday life that a link to vaccines is difficult for me to conclude. I can let go of the cause of Tristan's autism, if the prognosis for him will be good.

So, I made a choice to think about the future and not what may had been done to him, but what I can do about it. Unlike our other children, we focus much more on Tristan obtaining skills that will improve his life for the long-term. I don't spend hours thinking about ways to get Dylan and Liam to dress themselves or teach them how to wash themselves; I do for Tristan. We have a team of professionals that helps Tristan prepare for adulthood at the age of six. Heck, we started at three with daily charts and teaching Tristan how to feed himself.

After a moment of deciding where I wanted to go with Tristan's autism, I decide to not look back, but to step forward. O.k., maybe something or someone hurt my kid, but sooner or later kids get damaged and we as parents can move forward or stay put. We placed all our money, time, and energy on moving forward.

It wasn't until last year when I was telling a story about Tristan to a friend and colleague, Nat, who has autism that moving forward took front stage. After a day long retreat to write the final Vermont Autism Plan I pulled Nat aside and told him about how Tristan was already being called "stupid" (read more at Am I Stupid?) and how I thought we would not make it through kindergarten before I would have to home school him. I thought I would get sympathy, but instead, Nat said, "Well, if you take Tristan out of school then how are they (neurotypicals) going to learn to deal with us (autistics)?"

Well, Nat has a good point if I shelter Tristan from the everyday remarks of kindergartens then how is he going to negotiate the workplace. Instead of protecting Tristan from others, I empowered him by teaching him skills to connect with others, and it works!

Some people don't recognize Tristan 's autism when they meet him anymore, but I do. If you spent one minute in Tristan's classroom, you would pick-up on Tristan being different than the other children. I don't think I can just erase the autism, but I do I think we can develop the pieces that need to be worked on.

I created Parenting Autism to look forward and figure out how we can all work, play, and love together. Parenting Autism will continue to work towards an inclusion movement that helps all individauls succeed to their greatest potential.

Let Me Explain...

2008-10-14T20:52:00.003-04:00

O.k., so after my Jenny McCarthy and Autism Speaks blog post I have gotten emails and posts and I think I need to spend more time talking about the need for an inclusion movement. Let me step back and tell how we got here — the autism universe.

I was eight months pregnant with Dylan (number 2 child) and Tristan had no communication; he liked to play in the living room facing the window lining up his cars or animals. Peter and I thought that Tristan had an independence streak and all our friends marveled at his ability to "play" by himself. While I painted all the rooms of our old colonial, Tristan lined up his toys and flipped the pages of his books.

Honestly, we had no clue there was anything wrong until Peter's grandfather, a doctor, and all his doctor friends came to Vermont to play golf. One of Grandpa Doc's friends was a pediatrician and as we sat at the bar of Peter's Dad's restaurant, worrying about Tristan's small toes that curled-in, we happened to mention that Tristan talks in gibberish and how we thought he would just start speaking whole sentences when he finally DECIDED to talk. He looked at us, raised his drink and in his Indian accent said "If Tristan doesn't begin speaking soon, you may want to get him evaluated."

Before I fell off my chair, I thought evaluated for what — he is an intelligent little boy who is well beyond single word sentences because he has the sentence structure all figured out. After dinner we left and on Monday morning I called our pediatrician and scheduled an appointment. Doctor Sara said, "Bring Tristan's favorite toys and let's play and then go from there."

Doctor Sara, Tristan, and I sat on the floor in her office, while Tristan constructed a 100 piece puzzle without any help and only when Doctor Sara said say, "whale" did Tristan look up, but not at us, but at the photo of a whale on the wall. After the hour long, lunchtime consult, where I was asked if Tristan pointed (no) or if he tried to communicate (Peter and I thought he was deaf because he never responded to his name) Doctor Sara referred us to the Vermont Child Development Clinic.

Often I have wondered if Sara thought she had missed something; see we were never focused on Tristan's development — he walked and climbed early. We were worried about Tristan's health. From six weeks old Tristan's G.I. issues increasing became more intense with days of no sleep and screaming pain from his intestines (I could feel stool and gas at a very young age). Doctor Sara had Tristan tested for all sorts of diseases. We spent more time at the hospital in Tristan's first year of life than at the playground.

After Tristan was diagnosed with autism — full autism — not PDD-NOS or Asperger Syndrome, I asked Dr. Joe (Sara left Vermont and stays home with her three children) for Tristan's vaccine schedule and all his records. More about the connection tomorrow...

Girls, Girls, Girls...

2008-10-14T11:09:00.003-04:00

We are embarking on new territory here in the Timpone house, girls that like our boys or our boys liking girls. Remember our three love magnets are 6, 4, and 1 and the six year old, Tristan (the one with autism) basically talks non-stop about Star Wars. I mean he really has a Star Wars conversation going whether or not anyone is listening.

So to think we are already worried about girls strikes me as early. While picking-up Dylan at preschool last week , he decided to clean-out his cubby (weeks of drawings and notices can accumulate before we bring it all home to be recycled, ugh, I wish they just had recycling next to the cubbies) and he found a "love note". The love note stated that the unnamed four year old loved his cute face and his eyes and she would like to play sometime. She signed her name and added her phone number. Poor girl, what she doesn't know because she is an only child, is that we, the Timpones, have a difficult time arranging play-dates. We just get going on our weekly schedule then the weekend comes and no one wants more kids running around (I also hate talking on the phone these days, I have so much to do, no time for chatting with people I don't know). We will try — no guarantees though.

Then on Friday I climb out of the shower and grab my towel to have Tristan run into the bathroom and get in my face and says,

"Mommy does my breath smell?"

Not knowing if he had brushed his teeth I said,

"Ya!"

So, Tristan brushed them again, followed by trying to put his head under the bathroom sink faucet. While stuffing his slightly larger head under the faucet, he turns and says,

"My hair is sticking-up and I need to look handsome for Rebecca's birthday party."

Since the faucet method wasn't working I suggested some spray conditioner which Tristan used liberally and he smelled like grapes all day. What am I going to do with my boys in ten years?

Autism Speaks, Jenny McCarthy, and others, thank you, now let's create a movement towards acceptance...

2008-10-08T21:21:00.007-04:00

Having autism in the lime light has raised more money for ASD research and grants along with informing the public of early intervention and detection, however I am not sure the latest news segments about how to cure your child of autism, supports families in the long-run. We all are — "Warrior Families" plugging along trying to provide for our children while parenting them to reach their potential. When faced with autism, parents are given a diagnosis with no cause, cure, or prognosis even though we know through research that intensive, early intervention can often lead to a more inclusive life, we can sometimes get dragged down a path of trying to "cure" our children.

Curing our children with ASD only means we are taking a piece or pieces away from who they are. And what do we expect to replace the characteristics with, a fusion of "popular" people traits? Of course as parents we should help our children grow into adults that can enjoy a meaningful life, but I would never think of curing my four year olds's tantrums, I would work towards making him self-regulate himself. At the same time I think a child who has tantrums will someday be able to speak his or her mind, so I cherish the fact that my child screams when a toy is snatched from him.

However, I do believe we need to emphasize making children with ASD well, whether they suffer from gut issues or seizures, the care children receive should be complete and thorough. Often because an individual with ASD has limited communication or lack of connection to what hurts inside his/her body, doctors misdiagnose or a diagnosis is never made.

I have sat in dozens of doctor offices posing the same question over and over, "how can Tristan develop if he cries all night and has severe abdominal pain?" For the past four years I have been searching for the answer to improve my child's health, not to cure his autism.

Everyone has choices to make when faced with autism and since the research has not caught-up to the rate of autism we, as parents, often are left to blaze ahead without much direction. At the same time I believe as "Warrior Parents" we need to look at all avenues and not focus all our energy on curing our children with autism, instead take small steps towards a productive, meaningful life for our children and our families.

Parenting Autism

2008-10-08T11:15:00.003-04:00

Sorry I have posted recently, I have been busy working on some exciting new developments for Parenting Autism. Soon I will be letting you all know about what is happening, but for right now let me get back to writing. I have a great new blog entry that I will post later today.

Time Management

2008-10-01T15:25:00.004-04:00

**Disclaimer: this post has nothing to do with autism, at the same time having everything to do with autism.

I say this because since Tristan was diagnosed and our family has grown by two more boys time management has become my obsession. Actually, I think I work better under pressure and get more done. If I have all day (which I never do)to finish just a few tasks I end-up not completing anything.

My friend Susannah is always saying if you give me schedule I will do it, so here you go, here is my clean house secret (don't tell, OK?)

I set the oven timer for twenty minutes and I clean. No talking on the phone or catering to my children, I get into a cleaning haze. While the kids are plugged into a movie or a video game or while they are at school and daycare, I push the vacuum, dust the shelves, wipe down tabletops, and clean the bathroom until the buzzer rings. Then I stop with sweat rolling down my face, I look around and notice that the piles of dog hair have vanished.

Tips:

I map out my house and decide the rooms we most live-in and focus there. I begin in my living room dusting the shelves and mantel, then I vacuum the floor, and finally I vacuum the furniture. Next is off to the dining room/most-used-room and I vacuum anything that is upholstered and then the stairs and back to the dining room to finish the floors. Finally I vacuum the kitchen and laundry room.
Next I wash the kitchen floor on my-hands-and-knees; don't forget you have two hands, USE THEM. Take towels in both hands and wash.
Finally I run upstairs to the bathroom and scrub; I keep all bathroom cleaning supplies in the bathroom for convenience.
Before my time is up I tromp to the downstairs bathroom to clean just as the timer rings.
I clean upstairs once a week and downstairs two or three times a week.
Every night during dinner clean-up, I wipe-down all the counters and tables and load the dishwasher. When I am well organized I also fold the load of laundry that I placed in the washer during breakfast and bring the folded clothes upstairs to be put away during bath time.
Don't worry about perfect, people are not eating off your floors!

Best of all you just burned off your lunch.

Toy Store Tantrums

2008-09-28T16:14:00.004-04:00

When you are standing in the local Toys-R-Us and your three year old hits you as he zooms by you screaming that he will be getting the new Dora the Explorer rescue pack, you probably don't think 'we are practicing our relationship, so let's ride this out.' If you are like me you may want to rip that toy right out of his hands and say some "nice mommy words" like "don't you embarrass me" or my favorite "you will never, ever be getting that toy, EVER" and haul your special package to the car.

I have had my moments of either a screaming, kicking child that I swing over my shoulder like a sack of potatoes and take out of the store or I buy them whatever they want as long as there is no crying, screaming, or kicking. Sometimes these methods are unavoidable and necessary, but probably not good for your long-term relationship. Guess what you will most likely (unless something horrible happens) be a parent to your adult children longer than you parented them as children.

Once I realized that my relationship with my children will tally more adult years then child years, I changed how I parent (most of the time). As parents, we often we stay focused on the here and now and not the when they are twenty or even forty, what will our relationship look like. I don't know about you, but I want to still have a relationship with my children through out my life and theirs.

Before I would not have said I was controlling or demanding, but I was anxious of what others thought and I would avoid "learning situations" just so there was no outburst or tantrum. Now, when I have a screaming child in the toy store I look at it as practicing money management (which I hope my children are better than me at), so I might say:

"Do you have any money?"

Which makes the child stop and think and if he does, he may say:

"I have four dollars."

See, a learning opportunity and the child has stopped tantruming. Then you have a discussion of do you have enough money or you will have to save or get something different. This problem solving takes the pressure off of you and the child and you work together to figure out the situation. Now, if I just hauled the little monkey off to the car we would not have been able to practice and by the time he needs to manage his own money he would have no skills, not to mention our relationship would be based on me controlling his behavior.

As for our relationship, he knows I will not just hand over the cash, but I will be willing to help him work out the situation. Not only is he learning money management skills, but for the kid who has a difficult time self-regulating, learning the ability to stop and think and then move forward can be essential. Practicing is the key, this practical situation gets played-out daily in our house; "can I get...."or can I do..." and I repeat my line and then we talk about how to move forward.

Now, think long-term, how might this problem solving technique might help later when your child is sixteen? In addition to skills your child has gained, you are building a lasting respectful relationship.

You have to listen to this...

2008-09-24T14:25:00.004-04:00

Today on the radio program The Next Frontier, Anne Barbano interviewed the New York Times bestseller author John Elder Robison that wrote Look Me In the Eye. Robison at sixteen dropped out of high school, escaped his alcoholic father and mental ill mother and traveled the country with the band Kiss and built their guitars. Barbano spent the hour long interview prying information any parent of a child with ASD (autism spectrum disorder) would find as valuable as gold, because Robison not only built fire throwing guitars and later talking toys, he himself had a difficult time communicating and socializing and grew-up with Asperger's syndrome.

During the interview Robison explained the spectrum as functional intelligence and that some people lack of functional intelligence not that they are lower functioning. Lower functioning sometimes gets defined as not as intelligent or mentally retarded. If you have ever come in contact with a individual with ASD that has a difficult time communicating (the indicator for functional level) knows that the IQ of these individuals is not factor. I have met children and adults with ASD that are non-verbal, but can write or type or even produce videos (click here to see) that are nothing less than intelligent.

The way Robison describes functional intelligence take the spotlight off whether the person lacks intelligence and on what can be done help that individual thieve in society. Robison convinces listeners that anyone can move forward to a functioning life, as he puts it "(I am) living proof of turning around your life and getting a good result." Not only is Robison a New York Times bestseller, but he also runs his own classic automobile business where he restores everything from BMWs to Rolls Royce.

Anne Barbano's interview Robison is must listen and that I have finished Robison's brother's memoir Running with Scissors (I had no idea they where brothers until this interview, what a family!), I will now go down to the book store and purchase my copy of Look Me in the Eye.

Planning for Camp Kaleidoscope 2009

2008-09-23T15:58:00.004-04:00

Last Saturday we buckled into our Honda Civic Hybrid and zoomed up one of Vermont's many mountains (I should know the name), through the notch and back down the other side by the twisting road to Starksboro. Camp Kaleidoscope (the family camp for families touched by autism I can't stop thinking or talking about) lives at the Common Ground Center and planning for the June 2009 camp has begun with writing grant applications and fund-raising packets.

As the monkeys (my kids) played on the playground, Peter read for his class, and I met with the program director and co-director of the Common Ground Center. Our meeting focused on the sustainability of Camp Kaleidoscope while making our program available to all families, not just the ones that can afford the tuition.

As you can imagine Camp Kaleidoscope's budget is steep, not unreasonable but costly for a four day camp. We offer parents autism workshops and the kids a comprehensive program designed by speech language pathologists (SLP). Last year we were at capacity with 25 families, 25-30 SLP graduate students (our family partners), several community volunteers, and staff.

Not only does Camp Kaleidoscope give families a safe, camp environment geared towards autism, we allow our family partners the opportunity to practice what they have been studying while earning hours they need to graduate.

Whew! More will come in the following months about how we plan to reach more families... it's a top secret plan. So, get out your credit card and donate today to Camp Kaleidoscope! Or host a house party with all your friends in your community and we will come with our Camp Kaleidoscope stories, pictures, and brochures.

Special Education Bail-out

2008-09-20T07:33:00.006-04:00

The alarm rang (the three kids jumping on me) and I rolled over and opened my laptop to read the news of the day to find our tax dollars are going to bail-out Wallstreet and the investors behind the risky dealings. Some of these investors are hard-working middle class (like me and my family) who have a few mutual funds, but some are not, some are millionaires... I know the financial system was on the verge of collapse. My question to President Bush and the Federal Bank and anyone else who will listen is, so you can bail-out Wallstreet and rebuild Iraq and fight two wars, but funding special education at 40% (you promised, but never delivered) instead of the 15% (you now give the states) is too difficult to do, there is no money... uh?

Some experts say that the Wallstreet bail-out will cost a trillion dollars, yes, a trillion dollars, but tax payers can't seem to absorb the special education bill. Why is it that President Bush continues to use our money to fight wars and bail-out the private financial system, but can't seem to use our money to create programs that will help the "people".

Through out this country school systems are struggling to pay for an increase in special education and President Bush says "Sorry, it is hard times we have no money (for educating our children)", so you middle class can pick-up that bill and as a result "those" kids will continue to receive a less then adequate education.

I propose, President Bush now focus his attention and (our) money on what will directly help families and children in the United States and bail-out special education and while you at it, President Bush, can you throw some taxpayer dollars into the unfunded Combating Autism Act?

"Am I stupid?"

2008-09-17T05:41:00.007-04:00

We hear this question often during the school year that we pause and wonder if we are subjecting Tristan to some-sort of school torture. Last year in kindergarten Tristan came home saying that a child on the playground called him stupid and Peter and I thought 'OK, this is kindergarten, how much longer can Tristan endure school?'

Tristan seems oblivious to the "stupid remarks" until bedtime when either Peter or I snuggle in for a good book and loving and then like a wave crashing on the beach, Tristan says "Am I really stupid?" My heart splits in two and 99% of me wants to say "OK, no more school, that's it." But instead I ask Tristan if thinks he is stupid and we talk about learning differences and we hug and I suggest ways he could advocate for himself. We lay in bed practicing and role playing what to do if a kid calls him stupid.

The next day I talk to his teacher before class and at morning meeting the kids role play and discuss hurting each other through words. Still I feel unsettled, so unsettled even I stopped referring to Thor, our less than intelligent dog, "stupid" when he runs into the neighbor's yard (the one that has threaten to kill him) or pulls our organic, local (expensive) chicken off the counter and eats it.

Now it has been three weeks into our new school year and last night as I nursed our youngest to sleep, I heard Peter saying, "Tristan, you know you are not stupid, right?"

Nothing silence.
Then Peter said, "Is mommy stupid?"
Tristan replied "No."
"Is daddy stupid?" Peter asked.
"No." Tristan replied.
"Well we don't make stupid kids, so you are not stupid." Peter encouraged.

As I lay in bed with Liam cuddled next to me and Thor at my feet, I recall a conversation I had with a colleague and friend after the first time Tristan came home from school telling me that all his friends think he is stupid. I told this friend that Peter and I discussed home-schooling Tristan to shelter him from the years of harassment and his response was "well, then how are they (non-autistics) going get to know us and live with us." My friend and colleague grew-up with autism and managed his way through school with the same remarks and now he is the director of the self-advocacy organization in our county.

So, for now we remind Tristan of his strengths like an ease with math and computers and we hold on for the ride and remind ourselves we are practicing for adulthood where the kids that call him stupid now grow-up and have to live in a community of differences.

Two Families

2008-09-16T16:22:00.003-04:00

I feel sometimes like I have two families- one that involves Tristan and one that doesn't and it's not purposeful.

Last Sunday Peter and I were enjoying a dry Zinfandel and playing rummy (yes, as I type this we sound old and need to get out of the house more without children) at the table in our study, Dylan, Liam, our two dogs, and three cats lounging around us. The kids were playing Legos at our feet climbing over the various animals that love to be close to their pack when I realized one our members was missing.

I walked upstairs to find Tristan sprawled across the futon in the playroom singing the tune to Stars Wars while watching Clone Wars and building a spaceship. I turned around and retreated downstairs, 'let him be, he spent the whole day with us', I thought.

See it is a balancing act how much time can Tristan spend without human contact, I don't know, probably days. So, we have to invite Tristan to partcipate in his own family, but then we need to let him be alone. Even though I feel he misses a piece of our family, I have to respect Tristan's limits and keep pushing ever so gently to let us in more and more.

I still is sometimes difficult to accomplish...

Talking to Tristan's Class about Autism

2008-09-08T12:17:00.004-04:00

First grade began last week for Tristan and he is needing breaks through out the day to decompress from the increased classroom work. In kindergarten most of the day was spent playing with less structure and this year first grade has much more structure and less playing. Luckily, Tristan looped with the same teacher and students as last year, so the usually six months of adjustment is lessened.

However the workload has been difficult to adjust to for Tristan and Mr. Cody has altered Tristan's schedule to include some in the classroom break times after he completes his work that include building with Legos, drawing, and other quiet activities that he can do at the "break desk". Some of Tristan's classmates were protesting to Tristan's breaks and so, Mrs. Cody asked if I could come in talk to the class about Tristan.

Of course I was excited to have the opportunity to discuss our story and shed some light on differences we all face whether you have different skin color, or eye color, or learning style. I decided to add some science to the discussion and I brought in a picture of the brain and of the intestines.

Tristan's classmates had thoughtful questions and some not so political correct ones too like "Is Tristan stupid?" which turned into a great discussion about learning differences just like different color eyes.

While we walked to school the morning of our talk, Tristan and I chatted about what he needed his friends to know about him. I used probing questions like "when your stomach hurts what can you friends do?" Or "when your head gets to busy (sensory overload) what do you need?"

Even though Tristan had a difficult time focusing on the discussion (my computer was there and he wanted everyone to watch a movie), he did get the opportunity to tell his friends what he needed from them and vice-versa.

Do you work or stay-home?

2008-09-05T08:54:00.003-04:00

Tell me what you think? In my never ending pursuit to write and talk about the struggles of families affected by ASD, I want to hear your stories of how you support your family.

It has been studied that middle class families need two incomes to survive, and my question is how do you do that with a child with a disability? With school, medical, and human service meetings how can both parents work?

How does it affect your relationship with your partner? In families with children with ASD the divorce rate is over 80% and according to the census report women after divorce are more likely to fall into poverty while men gain more income. Does your earning potential cause you concern and what are you doing about it?

Email me at angela@parenting-autism.net , I want to hear your stories.

Running... literally

2008-09-04T10:46:00.007-04:00

Day number three of school and we are still walking to and from school, but this morning Dylan (number 2 son) said "Mommy, let's run."

Tristan yelled "NO DYLAN! I don't' want to run an' get tired for school."

"O.k., o.k." I said while I circle the rickshaw (the red and yellow, double bike trailer slash jogger stroller thing I parade around town with while older women feel compelled to tell me that they did not have such a thing when their children were young) trying to herd the three "monkeys".

Running out of time and patience I solve the problem by letting Tristan who is six and a half ride in the rickshaw with Liam (almost two).

Sidebar- Last week Tristan and I had a "big boy" talk that it is time to stop riding in strollers; he is simply getting too big (he grew two inches over the last few weeks of summer). Head down with his sheepish eyes he said "O.k., mommmmy, we get an adult stroller." I said, "No, that is called a WHEELCHAIR."

We maneuver through the construction crew that have been by hand creating new sidewalks for us and our other neighbors (Is it 2008? And we still make sidewalks on hands and knees, huh?) . We run along the road in the busy morning traffic and finally get to the finished portion of the sidewalks when Dylan says, "Mommy, let's keep on running. We will make a strong body for soccer"

Trying to act supportive, I run with him while pushing the rickshaw that contains at least seventy pounds of pure boy power. This summer I have let my regular exercise go, besides walking the dogs and tennis when the clouds did not unload downpours of rain. By the first few feet I am dying, almost falling over, but I want to be supportive and it's not like a four year old can run by himself on the side of the busiest road in town, so I continue.

We loop through town and I catch my reflection in the glass of the Rite Aid and I think 'Oh may god! What the hell am I doing? Everything is shaking.' Still trying to be supportive and out of all oxygen (I better get the best mommy award this year) we are closing in on Tristan's school and I realize, I FORGOT TO PUT ON LIPSTICK!

From the inside of the rickshaw Tristan is scream at friends... that are walking like all first graders do. I realize, soon I will be getting the mommy stares, 'Oh, you still LET your child ride in the stroller.'

"O.k., Dylan, mommy is going to walk the rest of the way (and find the lipstick I put in my bag just for drop-off and pick-up)."

Just as we enter the school yard where all the chipper, just-got-out-of-the-shower and all made-up, designer wearing mommies (and some daddies) are discussing their latest child's miracle, I feel my face and it is like I just got out of the sauna. My forehead is covered in sweat and it is dripping down my cheeks.

"Oh, crap!" As my monkeys blend into the sea of kids, I look through my bag for anything I can quickly wipe the sweat off with. 'Ah, I have it.' Not a tissue (all mommy keep in their bags, not me) or a napkin, the next best thing, A DIAPER!

Yes, I wiped my face with a diaper (a clean one, thank you) and slapped on some lipstick without all THE MOMS knowing and I was ready for the morning mommy news.

The End of Summer

2008-09-02T11:41:00.007-04:00

I have been fighting back the end of summer (probably with a light saver) since last week. Everyday for the past week, I would rustle the boys away from the computer by saying it may be the last time we swim outside or go throw rocks at the river. Vermont Autumns are historically beautiful weather with red flaming Maple trees that cover our mountains, but this end of summer has been the most difficult for me.

This was the first time in three years we decided to limit Tristan's summer services and stop the revolving door of therapists our house tends to have in the summer. Sure we were worried about regression and his Star Wars obsession, but we decided that our family needed a break. The last three summers the school therapist and the therapist we hired were in and out of our house daily which made our schedule too busy for long days at the pool.

So, we pushed back our fears of regression and hit the pool and the local beach and guess what the sky did not fall! Tristan even gained skills and I realized he learns more effectively from computer games than workbooks. For Tristan taking out the stress of the workbook and the social piece of have someone always by his side working with him and replace that with a computer worked for him.

Tristan was able to begin to recognize letters and numbers when using computer games instead of the workbooks or even the video his teacher and therapists produced for him. Letting Tristan have time to discover the video game on-his-own also helped by taking the social stress away.

As we dropped Tristan off for his first day at school, I realized summer is over (even though it is 80 degrees today) and the flexibility of jumping in the car and spending the day at the beach is over until next summer.

Go Ahead Bring Your Kid to the Party But Don't Forget...

2008-08-13T10:07:00.006-04:00

Last Sunday we were at a family birthday party and some of the invitees were people that we have not seen in a few years. Since my children were the only youngster invited, they gathered their sandwich bags of Legos and headed to the deck to build spaceships to play out the scenes from Star Wars.

Sidebar- Tristan can tell you all the plots of the Star Wars movies even though some of the movies he has not seen. Peter and I are still trying to figure out how Tristan does this. He can explain in detail all the scenes and characters in all of the six Star Wars movies, but at six he lacks full understanding of the alphabet.

Tristan and Dylan and even Liam were playing while Peter and I chatted about our new pellet stove that we bought earlier in the day (thank goodness, since I had no idea how we were going to afford the $750 a month bill).

Then the sister-in law of the host, turn to me and said "You must not have T.V.?"

Everyone stopped talking and peered at me. "No, we don't have T.V., but everyone (even Liam who is one) has a laptop and they watch their share of movies."

"You are crazy with young kid you don't have a T.V.", my mom's neighbor replied.

Still shocked by the way the boys sat and played by themselves, the sister in-law said "You must home school them."

"Nope, we just have expectations for our children." I responded.

Expectations can be difficult to establish and we think of it more like practicing skills. We expect Tristan, Dylan, and Liam to be able to appropriately socialize as adults, so now we need to practice by not allowing tantrums or fighting and we model conversations.

Of course, Tristan, Dylan, and Liam are still practicing skills which means they have "moments" when one of them (or all of them) melt down and we need to regroup or leave. This actually happened at the beginning of the birthday party last Sunday, Tristan wanted a Lego character that Dylan was playing with and a fight broke out. I scoped up Tristan and asked him how he was going to be able to stay at the party. He wanted a Lego guy!

So, we walked up the street to our parked car and where a Lego guy rested. Tristan got his guy and we walked back to the party ready to begin again.

Expectations, can be difficult to establish with your child and more difficult to follow through with. When you reframe expectations as practice sessions, then your child and your parenting never fails, you are just practicing.

Be ready to regroup or leave. For example if your are practicing socializing without tantrums then prepare your child with the plan for the event.

* Create a social story or talk about your expectations for the event

* Be clear with expectations and then the consequences both good and bad

* Don't get angry if the practice session is not working, but don't give up try again

* Remember athletes don't become Olympians because they practice once, the same with children and skills they need to practice over and over again.

Remember your job is to grow your child into an adult with a happy, meaningful, and productive life and that takes practice.

Have a Party!

2008-08-12T10:10:00.005-04:00

Create a social situation for your child (and yourself), by inviting a family over for a party! All children especially children on the spectrum need to gain social skills and the best way to hone skills is to invite a few people to practice with. The event doesn't have to be a six course meal in a perfect Martha Stewart house, just wipe down the counters and tabletops and have a potluck or a dessert party.

Invite a family or individuals that have similar interests as you or children (and their parents) that your child finds appealing. At the beginning of the school year Dylan (our number two child) fell head over heels in love with Mary a girl from his preschool class, so we invited their clan (three girls) for dinner.

Everyone actually ate, the adults chatted with minimal interruptions, and all three girls tolerated Tristan's constant conversation about Star Wars. Since that first dinner party we have had several with Mary's family and other families. Tristan, Dylan, and Liam have gain more social skills and we are uncovering the parenthood fog to discover that we actually like having friends and entertaining again.

party tips...

Invite friends that understand that kids may have behavioral issues and that will not be disturbed by your re-directions. Remember your kids are practicing their skills!
Keep it simply and have the kids help clean-up or make the food.
Make sure you put away any toys that are too precious to share.
Create a high interest social situation like play dough or our favorite pizza dough, so everyone can play together.
Buy a frozen pizza for the kids. Throw it in the oven and in ten minutes all the kids will be happy.
Have the kids eat first. Our kids eat fast and prefer kid food and our table only accommodates eight people (then the adults can eat in peace).
Then set-up a movie for after the kids eat. Sometimes we even have two movies playing for different interests.
While the kids watch the movie, the adults eat and chat (and drink wine).

Party Recipe

Appetizers

Corn chips with salsa

Cheese and sliced apples

Kid Dinner

A frozen pizza (half cheese and half pepperoni)

Sliced cucumbers

Adult Dinner

Green salad- lettuce, tomato, avocado, and cucumbers with a honey mustard dressing

Roasted chicken with red potatoes- chop one onion, one clove of garlic, and six potatoes toss with olive oil and rosemary and spread a the bottom of a baking pan. Peel about ten cloves of garlic and stuff under the skin of the chicken, then rub the chicken with salt and pepper and place on top of the potatoes. Bake at 450 until the juices of the chicken run clear about 45 minutes.

A loaf of good bread

Dessert

Ice cream cones

Camp Kaleidoscope 2008

2008-06-23T20:58:00.009-04:00

We just returned from Camp Kaleidoscope a family camp for families affected by ASD and we have tons of laundry and loads of memories. This is the second year of Camp K (fondly referred to by campers and staff) and what a difference a year makes in planning.

Last year I helped found Camp K with my friends Peggy Kamens and Jim Mendell and the staff at Common Ground Center in Vermont along with a few other people that shaped a great camp. However, we only had about six months to make Camp K a reality. Which resulted in a fine camp for families and everyone loved that experience.

This year with the addition of Margret Novotny and ALMC (Augmentative, Learning, and Movement Center) we were able to offer graduate speech language pathologist (SLP)the opportunity to receive professional hours in exchange for direct work our with children with ASD at Camp K. How it works is each family gets one or more (depending on how many children in the family are diagnosed on the spectrum) family partners (the graduate student SLP). The family partner helps the family and the child for the entire camp.

In the morning family partners along with many other volunteers usher the children to "Kidsville", a converted horse barn with toys, art, and other indoor activities and a fenced outside playground with a large sand area, climber, swings, and water play.

Parents safely leave their children with their family partners until noon for lunch. While the kids enjoy the activities and just plan old fun, parents get to escape to either hear a lecture about parenting or advocacy or tips in handling tantrums, some people enjoyed painting or tile making, and most parents at some point just went and read a book.

The family partners got a lunch break and community workers helped families with lunch and then family partners were back to help in the afternoon. Our family partner, Erica, played on the climbing structure with our kids and I napped; I was grateful for the quiet time.

Over the four day camp, twenty-two families came from all over the east coast to Camp K in Vermont to connect with other families. Next year we are hoping to add another session since this year we hit our capacity of families and we had 16 families on the waiting list.

To keep the tuition for families reasonable we have done a huge amount of fundraising. Camp K is entering a new phase of fundraising, we need to became sustainable and we are looking for help from the autism community. One way of course to support Camp K is to buy a Parenting Autism workbook and DVD and we donate to Camp K. More on this later.

The First Day of Summer Vacation

2008-06-19T08:26:00.003-04:00

6:15 am- My wake-up call.

"School today?", said Dylan

"No honey, no school, summer vacation."

thump, thump, thump...

Batman song playing in the background from their "movie computer".

I rollover to check email and to see the news for the day and I realize I better have a plan for the summer. The kids can't just sit in the playroom for the next two months watching batman cartoons. We need a plan, a schedule, we need to just get out of our pajamas!

I have been in denial about school ending and summer beginning. I love summer, but it just adds another layer of scheduling and work for me.

So, on today's to-do list- plan the summer! I know, I know I have been saying for months, "I want a low-key summer with less planning", but I think plan B needs to happen. Plan B schedule the summer, activities, fun escapes, and mini vacations.

Thank goodness we leave for Camp Kaleidoscope tomorrow for the next four days and get away from the movies. Movie detox that is what we need and we will get it at Camp Kaleidoscope.

I will post from Camp Kaleidoscope and tell you all about it, along with any funny stories and pictures.

Welcome

2008-06-16T20:46:00.002-04:00

Welcome to the Parenting Autism blog! The Parenting Autism blog will have stories about our life and travels, parenting tips, and updates about autism spectrum disorder, ASD. Come often and enjoy!