Friday, June 8, 2012

So We Change Our Dreams: Life with an Autistic Child (Reprise)

So the boys seem to be set for the summer. Our goal was to get them involved in "jobs," "internships" or "volunteer work" so that they learn the skills needed for the workplace as opposed to the skills needed for school. While many skills overlap they are not all the same and the nuances only come with practice, upon practice and more practice.

Right now they are weeding gardens for the Audubon Society. CM1 will then start his job in July and CM2 will hopefully start his class then too. The Audubon people may even have some data entry work for them as  well. CM1 is beginning to study for the LSAT and has decided to try some computer courses this year to see if maybe he wants a masters in computer science instead of a law degree. Honestly what ever works for him is fine as long as he makes a decision about his future. They also still have therapy appointments and I upped their personal training. Trying to use the summer to get everyone a little healthier.

I know that part of life, trying to figure out your future, is not easy. Heck I am in my 50s and I still can't decide what I want to be. Actually I have to honestly say that could be simply because my plans changed so drastically at one point in my life that I can't find a way to turn it back. Well its not that I want to turn it back per se, but trying to figure out a world that doesn't involve autism, the boys and helping propel them forward is really hard.

I was thinking about this the other day..well I think about it alot lately. I blog about autism because it helps me get things off my chest and I have found a terrific community of understanding people. I used to blog about politics (shut that blog down completely) but all that did was make me more anxious. I started the new blog, The Rediscovered Self, about fun things in life: clothes, movies, books, vacation, (anything venal, selfish and the oh so obnoxious materialistic part of existence...OK once in a while I add in something thought provoking),...sort of like the "bucket list" for autism-warrior-parents without the oh-my-God-you-are-going-to-die-tomorrow-necessity.

The truth is I am trying to figure out a business to run from my home, that doesn't involve having to cater to clients, because I can see the inevitable conflict between still having to help my boys and having to help the client. Also not totally certain what I am best at. I am good at organizing. I am good at collaboration. I like fashion. I like trends. I like modern life. I like interior design. I like home design. I like exercise. I like needlework. I like writing. I like projecting the future....I like alot of things and am totally NOT qualified for anything beyond what I do right now......the irony here is that I DON'T want to live entirely in the world of autism and special education anymore. I need to escape.

I mentioned my yearly dilemma to a friend and she is so sweet she said, the reason I can't figure out what to do with myself is that I am good at so many things. Actually I think the reason I can't figure out what to do with myself is that I am not certain how to even begin....I think that's my problem. I look to the end product without trying to figure out step 1. I need to find a way out of the tunnel and take the first step forward. I probably would do better too, if I didn't make up so many reasons that I will fail in my head or excuses why I can't do something. I know I should just figure out what I want to do and just do it.

Meanwhile I have been writing for years about how your world changes at that moment that your child is diagnosed with autism (here's my post from October 14, 2009)...

So We Change Our Dreams: Life with an Autistic Child

You know that dream you had as a young adult that when you finally had money enough to buy your own home, you would make sure that there was the formal livingroom and diningroom. You spent untold hours looking through a myriad of home decorating magazines inorder to piece together what you thought your rooms would look like. You would also browse furniture stores for ideas on decoration and watch the Home and Garden network continuously.  Then reality sets in. You find out your child has autism and wow, life’s choices change. Now of course, when you first hear that diagnosis of autism, the last thing on your mind is a formal livingroom and diningroom. The truth be told, you had known for some time that something just wasn’t right, you just didn’t know what. I can tell you that by the time collegeman was finally diagnosed at 5 it was a huge relief.

He had had terrible problems at several nursery schools in NYC and actually put in the coatroom in his public school on the upper east side because the teacher did not want to deal with him. Of course, I pulled him out immediately. The principal of the public elementary school actually lied to us and told us that they did not have to keep him in the school or help him. That she could not do anything about the classroom teacher and that I had to pay for the aide myself. (Evil Bitch) You learn things over 15 years. We had decided to move already as suggested by our psychiatrist, so don’t even think that we had money to sue. At that point we just wrote a letter to the then mayor of NYC, you know America’s mayor Mr. Giuliani, and the head of the school district. I am still waiting for a reply from both of them to tell me how they are going to help my son. We did however, get a call in April the following year asking where our son was, since he had not been in school since October the year before. Hubby told them he had not been in school for 7 months and thanks for finally noticing and promptly hung up on the morons. They never bothered us again. (By the way, we had informed that cow of a principal that we were leaving the school that past October).

So here we were, newly moved, severely in debt (ironically with autistic children that seems to be a constant in our lives), with a very disabled child, highschoolboy was two and not yet diagnosed, and me in a town out in the suburbs with no idea what to do next. Luckily as I stated before we spoke to the most wonderful Special Education Director who put collegeman on the path to recovery. I know that term, "recovery" is a loaded term, but I don’t know what else to use. Collegeman was sent to programs that helped him deal with his disability and then brought back in district and mainstreamed. He will always think with an autistic brain, but he is not the child he was at five, 10, or even 15. So I use the word recovery, I hope it does not offend.

Anyway, one of the most important things that I found to help collegeman was to arrange the house so he was comfortable. Now what does that mean. We made sure that he had his own space. He had toys, games, cards, that he just loved. He still lined everything up in order so these items had to be kept just so. Anyone with an autistic child knows that order out of chaos is essential for them to understand their world. Lined up toys or items is their way of making sense of a world they can not interpret and provides them with a sense of calm as they try to understand a world turned sometimes so painful and alien. He had a place where he liked to eat and be quiet and he liked his TV shows, videos, and video and computer games.  Now the townhouse we rented did not have a formal anything room so ignoring that space would not be a problem for us.

What we did do is turn the main living area, today they call it a greatroom, into collegeman heaven. Yes there was the couch  and an endtable to put a drink, but there was no coffee table. Why take a chance that someone would fall and hit their head? There was a television in an entertainment center where we wired in the video game console and kept his videotapes safe. This was also the beginning of the home computer craze, so we kept the computer there as well, so he could play his educational games. We had little plastic chairs for the boys to sit and watch TV. He really liked his chair and to this day still loves the color blue (however, being a teenager he likes really dark blue). Then we placed a cardtable in the back of the room behind the couch. This is where he spent most of his day when he was not in school. He kept his toys, cards, and obsessively lined up items just as he pleased. There was no need for meltdowns because he had what he wanted at the ready. He could navigate between his beloved items, his games, videos and computer without care and without trauma. Plus most importantly, he was always with us. He was not in the playroom in the attic alone. He was constantly surrounded by people who made him interact with them.

Since the boys had taken over the television and there was only one in the house, my parents, realizing I needed some adult stimulation bought me a tiny TV for the kitchen so I could keep up with the news. I think they were worried that I would go around singing the Barney song in adult company since it was all I was hearing 24/7. I thank them for that. It did keep me attached to the wider world. Remember this is way before social media  and a strong internet influence on society. At that time, when you were alone with a disabled child, you were really alone.

So the cardtable and modified greatroom worked. Collegeman interacted with the family, and remained connected in someway to everyone in the house. I have a great picture of our first Halloween in the townhouse (almost one year to the day that we moved in). The boys are dressed as Superman and Winnie the Pooh sitting in their respective plastic chairs, with smiles on their faces ready to go out and cause what ever trouble they could think of. Highschoolboy, still in diapers, seems a little unsure of himself (Halloween and highschoolboy will be another post) but collegeman dressed as superman had a huge smile and was making a strongman pose. He looks happy, content and by this time if you look really closely the cardtable had disappeared. There was still no formal anything in our house (OK its still that way, but I think that’s just because we decided that we are not very formal people) but collegeman had progressed. Between the right school program, therapy and a home where we gave him the freedom to feel comfortable and be himself, he eventually relinquished his area of control to become a full member of the family again.

WE change our dreams as life meets us head on.  Brilliant computer sister asked me the other day what had I wanted to be before collegeman was diagnosed,, (You see I had wanted collegeman to talk before going back to work after he was born. I wanted him to be able to tell me what had happened during the day with the nanny. Problem was collegeman couldn’t relay a story until he was older than 6) The truth be told I had dreams of sitting  on the US Supreme Court. I think if you attend lawschool most of your classmates would say the same thing. But like my formal livingroom/diningroom so went my career plans. Without wanting to disparage the brilliant persons who interpret our Constitution and keep our lawmakers in check, I actually think  that my present success will have a much longer lasting effect on someone’s day to day existence than any legal ruling by the Nine Supremes. As anyone who reads my posts knows, Collegeman is making amazing progress this year in his social/life skills  and on top of everything else, he’s a total teenage slob.

Actually they are both total teenage slobs now, bright, forthright and energetic youngmen. Both hell bent on a future. Yes there are issues. Sometimes even daily, but we work through them. Isn't that life for everyone though? Learning to take life's ups and downs and make your choices your own?

Until next time,