Archive for April 30, 2013

Guardian Angel?

Autism Mama Bear 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.

Tangled Up In Knots

Autism tying shoesFor 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.

That Boy’s Not Right

Autism DiagnosisThe 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.


Our New “Normal”

CJI 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.


Autistic Teen in the Forest

Freakin in the Autistic ForestWhen 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?