Blog | Autism Moves Out | An Autistic Teen Transitions to Adulthood

If you build it…

May 17, 2013 / Kathleen Williams / 2 comments

…will they come?

If it’s semi-independent or assisted living for young autistic adults, not only will they come, but apparently they’ll already be lined up around the block, begging, beating the door down. There is no waiting for anyone to “come”. People…parents…are desperate. There’s beginning to be a scattering of information on the internet…organizations who advocate for housing, employment opportunities, etc., for these children who soon won’t be children any more. There are articles with links to other articles, and every so often, a few videos of parents who have seized a circumstance and figured out a house or a job for their child. One. One that works for them…their income, their resources, their location, their state funds, their relationships. It’s amazing and beautiful…but it doesn’t translate to me. Or CJ.

What are WE going to do? And if we can figure that out, is there a way to consolidate it? Box it up? Strip it down? Make a master template that will work for anyone?

I met a woman who told me that when her son leaves on the bus for school, she runs out the door to go…anywhere. Anywhere at all. She will go sit at Panera by herself so that she can get out of the house. She is dreading next year when he is too old to go to school and she won’t be able to leave. While it is not a prison or a sentence, it feels that way. How, after all this time and work and effort, could it feel like it’s getting worse…not better?

I think the worst part is how much these parents love their kids. This is not to say in any way, shape or form that other parents do not love their kids as much, but with autism, you have to fight for every little thing with these kids. The intensity of the love may be similar, but the bonds are shaped sometimes very differently.

Seven years after CJ, my healthy typical daughter was born. When she started kindergarten, I pulled up to car line to take her into her first day at public school. 800 other parents walked their kids in that special morning, but my daughter had been waiting for so long to get dropped off in car line like her brother that she insisted.

I dropped her off at 8:05AM and came back at 3:05PM and picked her up. That was it. What?? What do you mean that is it? I was confused. Where is the notebook with the explanation of her day? When are the meetings scheduled? When do we go over curriculum? When do I explain to everyone her strengths and weaknesses? Nope. Nada. All we had was curriculum night along with every other kid in her class.

Don’t get me wrong. She thrived. She loved school and made tons of friends. She will go to high school, learn to drive and go to college. She will eventually get a job and move out.

No one told me it could be like this.

And so….it begins. CJ needs a place of his own…a place to share with a few friends like him…a place to live with as much dignity and independence as we can find a way to give him. That place doesn’t exist. Yet. So…how to build it? Where to start?

The first steps are to take everything I can find so far…everyone’s information about everything they have thought of, researched, toured and dreamed of, and then try to sort it out, document it and figure out what will work for us.

I am hoping that this blog will be a guide, a reference and an inspiration to anyone who passes through here. I don’t have the answers yet, but I’ll try to document our journey every step of the way. Perhaps the solutions to funding and building a house for CJ will be the prototype for something larger. I have meetings scheduled, a business plan in the works, an attorney and a CPA lined up, and some good leads on design and funding. This could be big or it could be really small. Either way….

It’s all starting with a house.

Category: CJ's House /

Autistic Guardianship or The Lid on Pandora’s Box

May 16, 2013 / Kathleen Williams / 2 comments

Well, I’ve done it now. I have actually started. I have a appointment to meet with an attorney about guardianship. I have started the research on a non-profit organization to build a house for CJ, his friends, and hopefully others like him. And I have let this blog go live.

There is a part of me that is so empowered and excited. There’s a part of me that is scared to death. There is a lot riding on this. My son really does need to “move out” and become more independent. He is happier when he is with his own friends, doing his own activities. He loves going to youth group and camp. He loves going to baseball and football practices and games at school. I love seeing him happy. I love the idea of restoring some balance to our lives.

There is a HUGE learning curve with all of this. There are big questions. Can I do it by myself? Do I need an attorney? Do I need an accountant? How does it all run? Will it end up costing more this way? Will it end up being more work this way?

There are so many unknowns at this point.

Category: Guardianship, Scared to Death /

Autism-Appropriate?

May 12, 2013 / Kathleen Williams / No comments

As I talk to more people and look over the first entries for my new blog, I’ve started to realize that if you are not in my situation, it may sound like I just want to get rid of my son. Actually, to some degree. it’s the exact opposite.

Yes, I want him to move out. I want to make sure that he is taken care of. I want him to be safe. But I also want to make him as independent as possible. I want him to have his own life.

When I read things other people have written, I realize once again, that if you are not in this situation, wanting an autistic child to move out may seem unkind or unloving.

People are so, so careful around me when it comes to stepping outside of the safety of an autism-appropriate serious and supportive attitude. I understand why…I really do. But hey! Come on! This is me!

I was making jokes while posting on Facebook. On CJ’s 16^th birthday, I posted “Happy 16^th Birthday! Should we get him a car or a truck?” I thought I was hilarious. (of course, I usually think I am hilarious) Most comments I got back were super nice. “Happy Birthday” “Hard to believe he is that old”, etc. A couple of brave people made jokes, but I mean only a couple. One person told me in person that he thought we should get him a motorcycle. Now THAT was funny! I complained to a friend that no one seemed to think I was as funny as I thought I was. She said that “unless you are in that situation, you are not allowed to make fun of (or joke about) that situation. “ I guess she was right. That’s kind of depressing.

When they are little you tip toe carefully around trying to figure out diagnosis and treatments for other people’s kids. It’s such a fragile, delicate time. When they are older, you just say “what exactly is his diagnosis”? And funny. By then, people are usually fine with answering questions and almost relieved to talk about it. They are often craving information as much as you are.

I have discovered that in this world, people are usually more than willing to share information. Nothing is sacred. People will discuss doctors, medications, Baker Acts, schools, and Therapists without blinking.

But just try to get them to laugh with you.

It is a strange little world growing all too big, but it is my strange little world.

Category: Laugh...or Else /

Autism Kicks Off

May 9, 2013 / Kathleen Williams / No comments

One of the great joys of CJ’s life is sports. He helps with the varsity baseball and football teams at high school. The true love of his life is HIS Challenger baseball team. He has been in heaven since we discovered Challenger.

With Challenger, for the first time he was allowed to play…really play…with his own peers. These peers are HIS friends. He talks about them. He has photos of them in his room and in his albums. He talks about them and even hopes to eventually live with some of them.

The biggest difference between Challenger and other leagues is that Challenger lets the kids play. The kids have buddies, but they are high school kids, not adults. And the buddies are not allowed to pick up or even touch the ball. The only exception is if a kid can not physically pick it up. They will then pick it up, hand it to the kid, and the kid will throw it.

When we started, the kids couldn’t do anything. Balls were going everywhere. Almost everyone hit off a tee. It was controlled chaos, and one might think, seemingly pointless. But now, only a small group hits off the tee. The kids attempt and often complete plays. When they are out, they are out! There is no “everyone gets to run bases”. It’s the real thing. They love it! They love tagging each other out. They learn to deal with getting thrown out. It’s real ball with real kids and the only exception to the general rules is that, at the end of the game they all “won”, if you ask them.

The buddies are varsity high school baseball players from the local schools. We have had buddy players who have gone pro and to college on scholarships. We have several who come back to visit or participate when they are home. I have seen times when the buddies were getting more out of this than the kids themselves…more than once. There is something to be said about arriving, bummed about losing a major game, and then watching these kids and spending a Saturday morning with them. It puts things in perspective.

I have a couple of things I say over and over. When you have a child, you have the same dreams for that child as everyone else. It is a boy! He will play little league! If he is good enough, he will play in high school. He shows some early talent, so who knows? He may get a college scholarship. And the ultimate dream for everyone would be to play in the pros. Why not?

Then you get “the news”. One by one your dreams for your child fall away. There will be no pros, then no college, then no high school. Little league? Maybe a “special” team. You look, and find that no one will actually let these kids play, though. And then we found Challenger. Challenger gave back to all of us a little of what we had started to think he would never have. He has HIS team with HIS friends. He gets to really play. He loves it!

The other thing that I say over and over is that if you think the youth of America are going nowhere good, come out on a Wednesday night or a Saturday morning and sit with us. The buddy’s teams may play until after 9 PM and then will have practice on Saturday morning. But they still come out with our kids. They have jobs, girlfriends and are taking tough classes to get into college. But here they come. We have had buddies take off of work to come with us to jamborees. We have had adults rearrange out of town trips to be back for games or so they don’t miss practices.

There are AMAZING kids all over! And CJ helped me see that.

Category: Amazed & Awed, Happy To Be Here /

Terra Incognita

May 4, 2013 / Kathleen Williams / No comments

I finally made it to the attorney’s office. You know those snakes that grab and try to swallow an antelope or a crocodile, and they get stuck trying to swallow it down? You can see it in their expression: “Maybe this wasn’t such a great idea…,” but there’s no turning back now.

That was me on a sunny afternoon.

You know what they say: Bite off more than you can chew. Then chew.

Category: Bound & Determined /

Guardian Angel?

April 30, 2013 / Kathleen Williams / One comment

Have you ever had the feeling that your head was going to explode? Remember that feeling in school when so much information was being crammed in at such a fast rate and you never had enough time to process it all? It all begins so innocently. You have a question. You ask the question. You get an answer. While processing the answer, it creates the need to ask another question, and then to evaluate and process more information as things grow transform and then more questions abound. Before you know it, you’re eating the cupcakes that were supposed to go in your daughter’s lunch tomorrow and re-watching reruns of Downton Abbey to make the noise in your head just stop.

Today, I asked a question. Today it all began. Today, I met with an attorney.

There was nothing I didn’t already know. I like to answer my own questions beforehand, and then compare them to the answers I get from everyone else. It’s what I do. If I do it right, there are no surprises. No big announcements. It is what it is. And I get to be right (I love that).

So there it all was…the next steps for us in relation to CJ. It was all laid out in black and white. A process. Specific steps. The good part — it was all laid out in black and white and it was all very clear. The bad part — it was all laid out in black and white and all just too real.

CJ is going to turn 18. And he can’t just do that with a cake and candles and the keys to a new car. CJ can’t be 18 without us. The Joan Crawford Institute for the Prevention of Dreadful Parenting says so. I know. I checked online.

CJ needs a Guardian. And apparently, it can’t be us. And it can’t be just any Guardian. It has to be a Guardian Advocate. Okay.

Now…I have a question. Remember the exploding head?

Who is going to succeed us a Guardian Advocate? Who is going to do what? What on earth is the difference between a Guardian Advocate and a Guardian? The attorney says to me “Guardian Advocate. ‘GA.’ Think Guardian Angel.” Helpful. My normal snappy come back failed me in this moment. My brain really must have been full at the moment because I just couldn’t come up with anything obnoxious to go with GA. And I really needed to. (I am guessing that was God’s grace that I didn’t, so that this guy didn’t think I was a complete lunatic, because I really really need him to confirm what I already know…and I’m still working on my own answer, BTW…I’ll let you know.)

So paperwork and some more paperwork. Cost is just not even an issue here. Get it done and get it done RIGHT! Mistakes can cost you at this point. (Scary) Even worse, mistakes can harm your child. (See JCI for Dreadful Parenting, above) Back to the whole Guardian Angel thing. Someone else is going to do this instead of me?? You know how they tell you you shouldn’t mess with a Mama Bear….well, don’t even think about messing with a mother of a special needs child! (There are always snarky postcard things on Facebook about special needs moms…their outlook and attitudes. They never, ever fail to crack me up, because they are so true.)

The attorney made an interesting comment to me. “You can read a book about being a parent of an autistic child, but there is no way you will ever understand unless you are one.” That is true about so many, many things. There are tons of jokes, funny stories, sad stories, tragic stories, information and events that will just break your heart. I always say that I can laugh or I can cry. Sometimes, I just scream.

But today, I exploded.

Category: Bound & Determined, Dazed & Confused, Frustrated & Irritated /

Tangled Up In Knots

April 29, 2013 / Kathleen Williams / 2 comments

For years we have tried to teach CJ to tie his own shoes. Therapists have “protocols” with step by step instructions to learn almost anything. I had no idea that there were so many steps to everyday activities that I do by rote. I don’t even remember learning most of these things. I am fairly sure after watching my daughter that you don’t ever “learn” per se, you just know when you are the right age.

Tying someone else’s shoes for 17 years is tiring. It was nice when my daughter learned to tie shoes. I could make her tie his shoes. She is much closer to the ground, after all. I said in passing something about him not being able to tie shoes. One of the women asked why I didn’t get him the elastic laces that triathletes wear. WHAT!!!???!!??? Apparently, athletes use these elastic laces that have to be purchased at a sporting goods store. They are elastic cording with plastic clips. The clips move to hold the laces at the appropriate tension for the wearer. When I went on line, it said “perfect for the elderly and persons with special needs”. OK. Why does no one I know with special needs kids know about this, then????

I bought them and put them on his shoes. He can now put on his own shoes and they stay on. OMG! I never knew that the quality of my life would improve with the purchase of a pair of shoe laces.

Category: Bound & Determined, Frustrated & Irritated /

That Boy’s Not Right

April 15, 2013 / Kathleen Williams / No comments

The first step is to notice that something is not completely “right”. It is particularly helpful when other people are pointing out everything that your child “can’t do”. I was told over and over to not worry about some things. “my son didn’t talk until he was 2, 3, 4” “boys talk later” “he is just an active, normal, little boy”. Then my favorites all about how he “needs a spanking”, “we basically suck as parents” “he does this or that strangely” “he doesn’t do this or that the way he “should” “

Where do you go from here? There were not the specialist and the information that there is now. We had Juno dial up. Our pediatrician went from telling me something was wrong to insisting that he could not be autistic. There were two doctors in town who would give a diagnosis. The one was self pay only. The other one took our insurance.

By the time we went in I knew the answer. He spent time talking to us and testing CJ by playing games and asking him to color, etc. He sat us down, looked at us and said “I guess you already know what I am going to say”? I liken this moment to a movie when the camera zooms in on a character and you can still hear what is going on in the scene, but the character’s voice is loud over it all as the character looks directly into the camera. I was the one being sucked away as the doctor spoke. I was in the camera as the doctor and the noise of the office went off into the background.

He prescribed medication. Now the real work started. I was introduced to a mom who had a son a couple years older than mine. She was a staffing specialist in a neighboring county and had a son in our county who was autistic. She literally “told” me who to contact and what to do. I took my marching orders seriously. I never take anything lightly. I mapped out a plan and started. I never took no for an answer. I insisted on being allowed to fill out paper work. I didn’t ask permission. I just assumed that since we qualified for services, all I had to do was fill out the paperwork and/or contact the correct person. Naively, it worked for me. I wasn’t that thrilled with it taking almost 6 months to get everything into place. I found out later that there was up to an 8 year waiting list for any services. He started getting ST and OT at school 2 months after school started, thanks to his teacher’s persistence. I found out later that there was an 18 month waiting list to get evaluated.

I started navigating the labyrinth of the world of “special needs”. Everything involves research, paperwork, meetings, numerous phone calls and lots of persistence.

And patience, something usually in short supply.

Category: Dazed & Confused /

Our New “Normal”

April 2, 2013 / Kathleen Williams / No comments

I have had various and numerous “moments” over the years. When CJ was in about the 3rd grade, the school tried to get me to sign off on him ever getting a diploma so they didn’t have to give him the FCAT. My friend Sarah, who had been such a help, told me that I didn’t have to do that and that I could insist they give it to him. If he didn’t take it, CJ would not be eligible for a diploma later even if he completed all the work. I just wasn’t ready to “give up” on him at the age of 9 and told them that. They were really nice about it, but looked at me with “that look”… you know…the one that says “she is still in denial”.

I had moments every time we missed a milestone. Silly ones, like little league or parties. One day when he was in elementary school, I saw something on TV about proms. I got hysterical that he would “never be someone’s dream date for prom”. My husband talked me down out of the tree by pointing out that CJ would NEVER want to go to prom anyway. Apparently, prom is hell, no matter which way you’re coming at it.

When he was in middle school, it just became more and more apparent that he really needed life skills more than academics. It was becoming questionable if he would ever “really read”. I started focusing on reading for function and writing for function and for emergency situations. Math for money and shopping.

Letting him go back to main stream high school was the right thing to do, but scared me to death after having a bad experience in middle school. I just didn’t want him to get “hurt”. Quite frankly, I didn’t want me to get hurt either…to go through it all again.

High school has been great. The kids have been great. We had some adjustments, but over all it’s been really good. The problem now…is me. I can’t see a kid in a high school football jersey without crying. CJ has always been a big kid and is so athletic. He could spiral a football at 4. He can still throw better than some of the kids who play on the teams. I also realized that other than a few line backers, he is as big or bigger than the other players. There is a song called “Boys of Fall.” I sobbed every time I heard it. In fact, if I need a good cry, I can still play it. It is all about what it means to be on a team especially in a small town. It broke my heart.

One day when CJ was 12, I was talking to S, a friend who also has an autistic son. She was telling about how her son had been Baker acted twice in the last year. I just started crying and couldn’t stop. She was comforting “me” and telling me that it was a good thing and that if we got to that point, there wouldn’t be another choice and it would be a relief.

Until last month, I had no idea how much of a relief it might be. Last month, we got there. I, however, did not get that relief. Yet another moment still waiting to happen.

Category: Just Plain Sad /

Autistic Teen in the Forest

April 1, 2013 / Kathleen Williams / No comments

When I was first asked to do this blog, my answer was instantly “no”. I had actually tried it before. I had tried to journal. I started a blog. But I’m the mother of an autistic 17-year-old son. Creativity and extra time went by the wayside right about the time my water broke.

Besides, I think I feel like everything I might say has been said before and usually over and over again. Autism, to me, feels unbloggable. Jenny McCarthy, I am not.

The buzz about autism…the medical literature…the national dialogue…the educational debate…all that has swelled from nearly nothing when CJ was born to an overwhelming onslaught of information, advice, and criticism about every aspect of my child’s personality, performance (usually lack there-of), and perception of the world he inhabits…an onslaught that often sends me screaming to my therapist immediately after picking up my own prescriptions. Somehow, it’s become a bumper sticker war between breast cancer and autism and it’s anybody’s guess who is more “aware.” Early intervention, ABA, IEP’s, therapists, scholarships, Challenger football, Disney Dreamer and Doer awards, mainstreaming…..

And then your autistic teenager turns 18. It’s time to “transition.” Time to “age out.” And suddenly, no one’s talking. In fact, there’s no sound at all.

If an autistic teen turns 18 in the forest, can you hear his mother scream?

Category: Dazed & Confused /