My Side of Typical

My Side of Typical

Monday, November 26, 2012

That Kid

When Miracle Boy was little and I would take him places that kids like to go, I always noticed That Kid. You know what I'm talking about. That Kid who is just a little too noisy, a bit too rambunctious, too rough or wild, etc. And I would watch That Kid and wonder: Where are his parents? Where is the discipline? What is wrong with him? Yes, I am ashamed to admit that I would watch with judging eyes. Never bothering to wonder what his story was, what his circumstances were.

Now, I have That Kid. As I sit here at the edge of the pool watching Bambam play in the water, I notice that he's splashing a little too hard. Jumping a little too close to the basketball game. Running full speed into the water. He's careful not to actually run into, jump into, or touch anyone else, but he sure gets close and splashes A LOT. And it does not matter how many time I say slow down, calm down, move down the pool; this is who he is. He craves this impact with the water. Its part of the sensory thing. I cannot take him to a pool and expect him to act otherwise, it will never happen.

So I look around at the other parents and I wonder. Which ones are asking themselves where are his parents. And which ones are asking why he's not disciplined. And which ones are wondering what is wrong with him. Because I know it is happening. I know because once upon a time I was That Parent.

Tuesday, November 13, 2012

Broken Hearted

My heart is breaking. My soul is heavy. I'm not even sure how to express in words the sadness I feel.

I took Bambam in for evaluations today. And all I can say is it was an epic fail. I know people throw that phrase around all to often these days. Its lost some of its meaning. But this was, in every sense an epic failure.

The evaluation was to start with an IQ test, move on the some social response testing, and finish up with some testing for ADHD. He lasted 15 minutes. During which he answered about 3 questions before his anxiety rose to the point that all he would say is "go home now, go home now". He didn't even respond to the question "can you show me your mouth". And I mean no response. Wouldn't look at the psychologist, didn't point, didn't have any expression, just repeated over and over "go home now, go home now." The doctor wisely stopped the testing at that point.

I am desperate. Desperate for some answers. (which I may never get) Desperate for some guidance and a path to follow. Desperate for anything. If no one can administer a meaningful test to this child, how can we determine where he is, what he needs, how best to help him. He knows where his mouth is. But he is unable to function in a testing setting with a stranger he doesn't know. And it breaks my heart to see him with so much anxiety, unable to do the simplest of tasks.

We realize that there is a very good chance we are dealing with some intellectual disability along with the autism. (one of the reason for today's testing) But my 6 year old knows where his mouth is. How do we determine how much of his response (or lack there of) is the result of intellectual disability and how much is the result of autism or anxiety or dyspraxia or sensory processing disorder or any of the many other labels that have been attached to him? Its overwhelming. And heartbreaking.

The next best thing is to have us, his parents, fill out several questionnaires about his behavior and abilities. I hate these. We've done them before on many occasions. And it never gets any easier. Being faced in black and white with the struggles my child faces on a daily basis is hard. Hard really isn't the right word. It's heartbreaking. Really. No, my 6 year old is not completely potty trained. No, my 6 year old cannot button his shirt independently. No, my 6 year old does not know his phone number, cannot read, does not play with peers his age... Yes, he perseverates on the same topics, talks incessantly, doesn't understand facial expressions... The questions go on, and on, and on. And I know all of this, I see it every day. But to have to put it down on paper where everyone can see it in black and white. Well, it nearly breaks my heart.

This is such a painful process. But I am so desparate for answers, or at least some guidance and help. And I'm not sure I'm going to get it.  My heart is breaking and my soul is heavy.

Thursday, November 8, 2012

More Evaluations

On Monday Bambam goes in for another round of evaluations and tests. 4 hours of testing with a neuro-psychologist. A new Doctor that he doesn't know. In an unfamiliar setting. In an environment where he knows he's being evaluated and wants to do things "right". It is a familiar formula which always equals a very anxiety riddled little boy. I wish I could do it for him. 

I do not like being the one to take him, exposing him to what is for a him a hostile environment, a painful experience. As parents we want to protect our children. Keep them from pain, anxiety, fear. But sometimes it cannot be helped. I know it is for the greater good. Making sure we are on the right track, providing him with the services and accommodations needed to reach his full potential. But that won't make Monday any easier. Sometimes being a parent is hard.

Thursday, November 1, 2012

Halloween

A text to my friend on Halloween 2009:
"Wow. Trick-or-treating has never been such an utter failure. Didn't want to put on his costume. Refused to wear the hat. Wouldn't knock on any doors, didn't say anything other than "home, home", threw the few pieces of candy he did get. And when we turned a corner and saw a fire pit, it was all over. Full blown meltdown, crying, screaming, trying to claw his way into my shirt, total chaos. I just want him to have fun."

That was 3 years ago. Before a diagnosis of Autism. Before we learned about Sensory Processing Disorder. And all the other idiosyncrasies that go along with the label of Autism. Knowledge is so powerful. 

After 3 years of intensive (on going) therapies we have a different child.

Halloween 2012:

Bambam: "Hawoween coming"

Me: "Yes, do you want to dress up and go trick-or-treating?"

Bambam: "Yesssss"

Me: "What do you want to dress up as?"

Bambam: "Buzzzz...or Spyermn"

So I found a Spiderman costume and paid $30.00 for it. To which Mr. Fixit said, "You paid $30 for a costum that he will only wear 60% of (he won't wear anything on his head, so much for the mask) as he goes to the 3 houses of neighbors he knows and then insists on coming home?" Yup, my kid TOLD ME WHAT HE WANTED TO BE FOR HALLOWEEN. You bet I spent $30 on it, even if he doesn't end up trick-or-treating at all! He brought up Halloween unpromted, and then told me what he wanted to be. That alone was enough for me. I would have spent $100.

Yet, I still had no expectations. After several years of unsuccessful attempts at trick-or-treating, I had finally learned to just let it go. After dinner I casually asked Bambam if he wanted to put on his costume and go trick-or-treating. To which he answered a resounding "No!" OK, I told him to let me know if he decided he wanted to go and went about cleaning up the kitchen. About 15 minutes later he brought his costume to me and asked to go trick-or-treating. 

I helped him get into the body suit and set the mask aside. But he pointed at it and said "I need dat". Really??? Yup, he put it on! A full over-the-head mask with 2 eye holes and tiny nose holes. This kid who has refused to even wear noise cancelling headphones has a full head mask on! And out the front door he went, running to the neighbor's house.

In the end he not only went to the 3 houses of the people he knows and talks to regularly, but up and down the next 2 streets. We had to run to keep up with him. He sometimes forgot to say "trick-or-treat" and just said "please" instead (scripting is not his thing). But he never forgot to say thank you. He kept the mask on for about 4 houses, then it ended up in the candy bag. But I couldn't have been more proud of him. My kid enjoyed Halloween. HE HAD FUN.

Best $30 I've spent all year.