Tuesday, October 21, 2008

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.”

Wednesday, October 15, 2008

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.

Tuesday, October 14, 2008

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,


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?

Wednesday, October 8, 2008

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.

Wednesday, October 1, 2008

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.

  • 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.