A week from today, I meet with a new pediatrician and we are going to discuss the paperwork and records I dropped off from school reports and his IEP’s as well as all the records from the hospital and his primary care physician.
I do not know what to expect, what she will tell me, but I have a feeling for once, she will just be able to sit down and listen.
She will listen as I ask, “ADHD and SPD?” “Both? “”One or the other?” “What about ASD testing again?” “Did the psychiatrist even test him for ASD in the first place because I don’t see any of it written down in the pages I have copies of…”.
Does it actually matter that Josef only fell asleep in the the big papasan chair/swing until he was almost a year and a half old? Or talk about all the times we had issues with him and his imaginary anxieties as a toddler? One winter after getting home from a dinner party, Josef refused to take off his shirt that had sesame street characters on it. We have no idea why, but we took it off of him and put on a sleeping shirt. He started to lose it and was in hysterics pointing to the closet door where his hamper was–where we just put the sesame street shirt. He got out of bed and started pounding the door. He looked desperate–not mad. There was a reason for why he just had to sleep with that one shirt on. So, after about 15 minutes, we, in our desperation, took out the hampered shirt and he wore it to bed. Battle for control or battle because of a sensory issue? He used to get mad when his sock seams did not align where they were supposed to. But these battles seemed normal, so we didn’t’ think anything of it.
He’s just really particular.
So, I answered, “No” on the questionnaires we were given at the time of assessment for some tactile defensiveness. I just thought he was way too scared of haircuts and that’s why it’d be a huge issue. He itched at his underwear tags. No idea. No idea SPD even existed.
We thought he was just sensitive and/or being difficult.
I have been slacking in the “keeping a log” since we were diagnosed the summer and fall of 2010, so this is kind of a little attempt to start at it again.
Will I have to give her the account of when Josef got so angry at his cousin’s face getting “messy” and how he desperately tried to wipe it himself? It caused undue anxiety and his meltdown seemed out of the blue. Is that part of SPD or ADHD?
Or in my back log, when we were trying to possibly get transferred to someone who could assess possible ASD, he had two meltdowns in the room? One because we kept telling him to STOP pushing every button on the thing attached to the exam table and the other because they didn’t take his temperature under his arm like the last time he was in the doctor’s office?
What about that?
Or recently when he was at the YMCA, he bit an 8 year old boy because he was pushing him? And a girl knocked over his tower all at the same time? Sensory overload with communication skills escaping him. Then, for the following two weeks, he freaked out because he didn’t want to go to the YMCA in case that one teacher was there or that one boy was there.
Since then, he’s braved it, but is still reluctant to go on a Saturday morning. I decided I won’t go to the YMCA when it is busy. I try to avoid it but does that mean I’m not helping Josef cope with sensory overload or how do I do this without totally babying him?
On the bus, when other kids are too loud, he’ll keep yelling “BE QUIET” until he gets off the bus. Thankfully, those times are few and far between. But once there’s a way to do something, you have to do it the same way every time. Because for Joe, the world is black and white. One of his most-used lines is: “That’s not right!”
Last week for us was busy. My husband was off from work from Monday thru Wednesday, Joe had school in the morning one day and he skipped school to go to Kindergarten round-up with me at a potential school on Friday. He’s been biting his nails– putting them in between his teeth, he’s stopped his Transformer shooting–where when he was tired, he would make a shooting sound and cock his head up a little. When we asked him why he did it, he said, “I don’t know.” He’s been spinning more and making the sleeves of his clothing wet from sucking and biting on them. I’ve been giving him chewing gum to help get some sensory input, but sometimes it works and sometimes it doesn’t.
Saturday and Sunday, he woke up on edge. I’m reminded of years past when this seemed to be the norm and I went to bed tired, angry and actually not liking who I was becoming. I’d talk to friends, “I’m not usually a mad person… maybe I have S.A.D….or PMS that lasts for three weeks at a time?” This whole weekend, I’m trying to keep it together. But I realize when we are outside on Saturday, my husband’s been in the kitchen all morning and part of the afternoon ripping up our sink to install a new garbage disposal. We accidentally threw in the extra wrench on routine. Oops! Our bad. Last night, Aaron said, “I sure hope Josef had a good day…”. All weekend, it was trying for all of us with. I feel like we’re constantly having to fight about eating, dressing, doing things NOW, stop melting down, oh and sit down when you’re eating, stop tipping the chair over,etc. It sounds so negative.
So, all in all, I am ready to do full-out testing. I don’t really know if that’s the best thing to do, but I’m drowning in the alphabet soup of all the diagnosis’…
Yesterday’s experiment was trying a peanut butter cup shake. “Mom, it’s too different.”
So I just drank up the 500 calories.
Today we’ll try chocolate because it’s his favorite.