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:  read more »

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?  read more »

Over the last year I had been able to talk to adults on the spectrum through the Vermont Autism Plan steering committee; I sat-in on public forums for adults and read countless interviews of adults along with surveys we spent out to families, adults, and professionals. I became interested in what adults with autism thought might have helped them prepare for adulthood and what would help them now. Late winter, last year I leaned against a white wall in the basement conference room of a county mental health agency listening to adults with autism tell me and two other members of our committee how they wished their parents understood them more and how they are outcastes of our society. Tears rolled down my face as the men (this forum only had men on the spectrum) recapped their life and how now they don’t work, play, or have relationships and I thought it was time for a change, time for all people to feel included.

Parenting Autism will be leading the way, by not only educating parents on preparing your child for adulthood, but I also building an inclusive community for all. Look for more exciting news in the next couple months and our Build Inclusion roll-out plan.

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.  read more »

Part Three: How we got here...

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 jump onto. I can let go of the cause of Tristan's autism, if the prognosis for him will be good.  read more »

Let Me Explain...

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."  read more »

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.  read more »

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