The Holidays and Autism

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

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

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?

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

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...

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...

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...

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...

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

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

**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

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...

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

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

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?"

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

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

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?

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

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

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...

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!

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

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

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

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!