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??