Saturday, September 24, 2011

Why Can't he just be BAD??

When your child has a condition that can vary by the day and isn't a visible problem it creates a very unique situation. If your child wears glasses you know that an eye test will show their problem and their needs to fix it. If they are deaf or have another level of hearing impairment you know the results will show on a hearing test. But when your child looks normal, and has no testable problem what happens when you meet a new doctor, Occupational Therapist, or other service provider?? Nerves, that's what happens, and it's the parent(s) not the child.

Knowing your child has an eval or has someone sitting in to watch them makes you say "Oh I hope he is just bad!" Because while you hope, and pray, everyday, for a good day you NEED them to see what your child does.

The other day Blu went to his Speech Group, through the county for his IEP, and it was his first for the year. He had been begging all summer not to go, and with busy schedules we weren't intending to make him. We and his therapists agreed that the other activities were more important. I took him this week because an occupational therapist was coming to observe him, to start his report for occupational therapy (hopefully.)

Blu walked into the classroom, without me dragging him kicking and screaming down the hall (which I've had to do more times that I can count in the past.) He walked in and jumped right on some large bouncy balls, including the peanut one, he fingered the beans in the sensory table, he played, and acted completely normal. Normal! I sat there staring, thinking how great he was being and wondering "Why can't he be BAD!?!?! I NEED him to be bad!" He continued in the same manner for the whole class. The OT said to me "Besides him fidgeting in his seat, he seems to have no problems."

No problems??Trust me, that child is chock full of problems. As much as I love Blu regardless the child isn't normal. It's a sad but true fact. It's a weird feeling to be having such a good day and that in itself making it a bad day! It can become a big problem of my word against what the person is seeing. Which seems easier to believe:

A young, first time mother saying her child is weird and listing the ways?


The 4 year old who is hopping around the classroom and behaving exactly like a 4 year old should?

Besides a lot of fidgeting, and his general disheveled appearance he did great! He looked perfectly normal. He sang the songs. He played the games. He did the messy craft, and didn't freak out when he got glue on his fingers. (I had to explain to the OT that we've worked hard on that one.)

I gave the OT the paperwork from Kennedy Krieger to make herself a copy. We walked together, Blu, her, and I. He opened doors, used the interior stairwell (something that usually causes a meltdown.) He pushed buttons, asked questions, showed no real sign of anxiety, besides using a low voice. Then we left.

Blu and I left his teachers, walked down the hallway, pushed open the double doors, exited the building, and Blu began running in circles, shrieking, and tugging at his shirt. I waited, letting it continue in hopes that the teacher would come out (she was coming right after us) and would get to see it. I hear the double doors opening, I pause in expectation, I wait, scarcely breathing, and then Blu stops. As soon as the doors were open enough for an actual person to come out he stopped, walked over, grabbed my hand, and asked to go home now. Major face palm.

SPD is not currently a legal diagnosis. There is no medical code for it. His paperwork will not say "Diagnosis A15, Sensory Processing Disorder." (Made up a random medical code there.) His diagnosis will be he said she said, until it has a legal diagnosis code. We have a paper from one of the best specialist firms in the country saying he has it, but anyone who wants to deny it can. If his pediatrician doesn't "believe" in it, he doesn't have to label it. (And we would switch pediatricians.) The OT who saw him this week could easily write on his paperwork that she saw no real problem. I don't think she will, simply because it is the county and the county gets money based on how many students it serves, but she could.

Is there a SPD Emmy? Maybe we could call it the Senmy??? Because he put on such a good show he deserves one. Oh but it was a good day though.... Such a good, good day.

Are you the parents of a special needs kid? Especially somewhere on the spectrum? I'd love to hear your experiences in this. I'm not alone here, am I? Prove it to me? Please??

A Poem I Found

I found this poem in the sidebar of another blogger over at Well That Makes Senses and really wanted to share it.

The Misunderstood Child


Kathy Winters

I am the child that looks healthy and fine.

I was born with ten fingers and toes.

But something is different,somewhere in my mind,

And what it is, nobody knows.

I am the child that struggles in school,

Though they say that I'm perfectly smart.

They tell me I'm lazy-can learn if I try-

But I don't seem to know where to start.

I am the child that won't wear the clothes

Which hurt me or bother my feet.

I dread sudden noises, can't handle most smells,

And tastes-there are few foods I'll eat.

I am the child that can't catch the ball

And runs with an awkward gait.

I am the one chosen last on the team

And I cringe as I stand there and wait.

I am the child with whom no one will play-

The one that gets bullied and teased.

I try to fit in and I want to be liked,

But nothing I do seems to please.

I am the child that tantrums and freaks

Over things that seem petty and trite.

You'll never know how I panic inside,

When I'm lost in my anger and fright.

I am the child that fidgets and squirms

Though I'm told to sit still and be good.

Do you think that I choose to be out of control?

Don't you know that I would if I could?

I am the child with the broken heart

Though I act like I don't really care.

Perhaps there's a reason God made me this way-

Some message he sent me to share.

For I am the child that needs to be loved

And accepted and valued too.

I am the child that is misunderstood.

I am different-but look just like you.

Monday, September 12, 2011

And It’s Official

Or as official as it can currently get anyway.  How many details do you want?? I’ll do a long version.

We left the house early because we were sent a note to expect extra delays for a race. We however, had no delays. We arrived almost an hour early. BUT we were still seen, with our Occupational Therapist within a half hour. Upon arriving there was a check-in where grown-ups received visitor wristbands, and Blu got a special “Our Little Visitor” sticker for his shirt. The special care paid to families, and children, and their safety were phenomenal! If you ever need to go to Kennedy Krieger, DO! It is worth every penny.

So, it all began with the OT (Occupational Therapist) asking Nick and I a lot of questions. I took his thick file of paperwork from past evals and from his speech group. I took a visual, a shirt he had chewed to literally shreds over the course of a day. Then the eval continued to include various developmental tests. She had to do things to test his pencil grip, use of scissors, ability to copy lines and shapes, stack blocks, etc. All of which he passed with flying colors.  She then took him into their sensory room. I was a little nervous because he seemed like he might just take off and have fun, which would be nice any other day but we needed her to get an accurate example. He wouldn’t climb the ladder to the slide, he tried to avoid the spinning tire swing like the plague, and he LOVED the giant crash pad with a serious passion.

(For those who don’t know what a crash pad is, picture a giant pillow. BIG, like 3x 6 feet. Not only did they have several separate such crash pads, they had it in a giant bin. So you ran up a ramp, and crashed into the pads, by jumping or diving.)

The end result,  before the whole evaluation was even over, yes sensory processing disorder. What does that mean for us? Not many changes really. She said we are on the ball with doing what he needs. We will be receiving a 15-20 page full report in the mail, which will include a “sensory diet” for us to follow. Now, a sensory diet is not a diet as in what you eat, but what you do every day to accommodate sensory needs, the proper “diet” of things to satisfy the senses. Some things include making him drink a thick drink through a straw (something we are supposed to do daily,) brushing his skin with a special tactile brush, or allowing a lot of rough play. He will need to start getting 1 hour of 1 on 1 occupational therapy a week, focusing solely on sensory input. Which means they don’t need to make him sit a certain way, or hold a pencil, or work with scissors, but they will make him spin, eat textured items, play with messy stuff, etc.

In many ways we are lucky. His sensory issues are not controling his motor skills. (For example he’s not so sensitive that he won’t hold a pencil well.) And while Sensory processing often goes hand in hand with Autism or Aspergers Blu doesn’t really have symptoms of either. He is a case where all of his issues are sensory related, or at least it seems that way now. So with therapy the specialist said that in 2-3 years you’d barely know he had it. He won’t be “cured” but he will be able to function normally or have a better sense of what to do to feel better.

Our life has been crazy lately, but mostly unrelated to this. And so this post has been in progress for over a week, while I found a few minutes at a time to type. Sorry about that! I know many of you were waiting to hear what happened.

I’m sure you have questions about all of this. Please ask away in the comment box below.  And stay tuned for more from our lives as we accept abnormal, like how is a standard day for us?How did we begin to suspect SPD? Why did I say it’s only as official as it can get?? And what is our homeschool looking like this year? All posts I have planned to type in my spare moments.