Sunday, September 28, 2008

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.

Wednesday, September 24, 2008

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.

Tuesday, September 23, 2008

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.

Saturday, September 20, 2008

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?

Wednesday, September 17, 2008

"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.

Tuesday, September 16, 2008

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...

Monday, September 8, 2008

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.

Friday, September 5, 2008

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 , I want to hear your stories.

Thursday, September 4, 2008

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.

Tuesday, September 2, 2008

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.