~~~~Warning It actually turnedout really long you are warned!~~~~
I just wanted to give a quick update on the day since it turned out semi-productive. And yes Liam's steroids seem to be giving him full on roids rage this week but doing nothing for his group... In fact he's coughing more today than yesterday. But if he doesn't sound better by Fri. morning there's no way it would be safe for him to go under anesthesia especially given his long history with croup and reflux. I've got to find time to squeeze an appt. in for him with the pedi. tomorrow and she can make the call since I completely trust her and it's one less thing for me to deal with. Riley needs to see her anyway for her weekly appt. She is actually coasting along same issues no better or worse so on word we go all the while holding our breath for the bubble to burst. Her insomnia is definitely persisting. She didn't nap all day and was asleep by 4:30 and hasn't woken up since. She did the same thing last night too.
As far as today we had a little change in plans, nothing new for us :) Someone called my phone about 3 times in a row which woke me up at 9am this morning (I do the late shift with the kids and had been up til 2am Wil gets up at 6am for the morning shift with them) turns out it was the Child Find coordinator at the school board. Liam was scheduled to go for his pre-eval for his IEP in late Aug. since this was there first available spot but they had a cancellation today and said if I wanted to come down come NOW. I swiftly took the appt and canceled our Orlando appt for this! So, off Liam and I ran, down to the school board office in Viera. Omg! That place is the biggest maze I have ever seen! Wow, anyway the teacher actually doing the eval was very nice and thankfully explained everything and was very realistic about it all. This was a good thing since it is going to be a nightmare once Riley hits the school system... That's all for another day and another post though!
I love how it ALWAYS starts. We are talking and Liam is over and playing with things quietly and sitting in a chair. This women of course is doubting why my child who looks, sits, and talks all quiet normally is even there for an IEP eval but she is just going to do it to humor me. Now, fast forward to us leaving with Liam in his pink Polo shirt, Nike's, and only a diaper and (having to walk through all the maze of the school board like this to get out) her telling me "wow you certainly have you hands full, I don't know how you do it" to which my response is, "you should meet my daughter! She's even more fun, LOL" . So typical it's beyond ridiculous!
*He has the vision of Bionical man and can see better than is almost possible,
*He did pass his hearing test BUT I don't think that is accurate since he has failed it in the right ear twice now at the ENT's but it doesn't really matter since the loss isn't enough to need a hearing aid so I'm not worried.
*His speech is great he speaks in complete sentences and only has issues with L's and a few other letters but that's expected until age 5 she said.
*His articulation is way ahead of where a child his age should be. She started to ask him things she thought there was no way he could answer and was on about a 1st grade level. He was acting like he was board to death because it was so easy. His IQ is actually quite high she thought! :)
~~~Now for the fun~~~
*When she told him to draw a picture of mommy's face he was only able to scribble lines all over and make a half hearted attempt at a circle. She was very unhappy with his writing considering he is almost 4. She was almost shocked in fact... And I have to say I don't think it was him goofing off since that's all he ever brings home from school for drawings and such. Also other OT school related issues are he still can't button or zip his pants or even wipe himself in the bathroom.
*For Gross motor he was sitting in the W position the whole time they were on the floor working. She kept trying to correct him but he would always end up like that again next time he sat down. He can't stand on one foot for more than a second if that. And most of the time he can't walk more than 10ft without tripping over his feet, falling, or swaying around.
*Sensory is still an issue for him. Not as bad as it used to be but still a large factor. There are multiple behaviors and thing like noise issues, texture issues, and other sensory seeking type behaviors.
*And or course saving the best for last... His most prominent issue of all. About 15 min. in Liam started fidgeting. By the time she was done 45min later he was literally bouncing off the walls. Getting crazy and making loud and inappropriate noises and refusing to follow directions mean while he had already had one accident( he had peed in his original clothes on the way there so this was the back-up set) and had to go potty two other times. By the time we were leaving he was trying to sneak out the door and run down the halls. She was surprised how quickly started acting out since usually the novelty of the new environment and person lasts at least a little longer. These are preciously the behavior issues not only us but Liam's school have been having. It's not anything we have been able to control with any kind of discipline or the like and it's not like he is like that all the time. The only thing that works is being one on one AND having constant stimulating activities. Obviously not realistic in any situation so we need help! His behavior issues seem to be due to a number of factors. One being his medical issues when he is fatigued or having an "off day" there seems to be a spiral effect and instead of saying he feels bad or laying around he is acting out or getting hyper. Second, given the long family history of ADHD it is not a huge surprise it looks like this is most likely a factor. He was acting very typical for ADHD today apparently very short attention span even for age, unable to sit still, if he wasn't being stimulated he would act out by yelling or banging toys or something, and he was distracted by every little thing. This is such a typical situation for us though these are everyday struggles. The third issue that factors in is behavior issues due to the emotional aspect of everything he has been through in the last year and a half. But all together it makes for a lot of bad behavioral days where he could easily fall through the cracks in a busy classroom and fall behind the other kids. I REFUSE to let this happen especially after it was confirmed today just how smart he is.
So.... Liam won himself a full 2hr. comprehensive IEP evaluation. She finally said, "Yes, I can see now why you had concerns and he very well might get an IEP". He has to have a greater than 25% deficit in an area to qualify for IEP. So, they will let us know when it's scheduled but it most likely wont be until Aug. everyone leaves for summer break in a few days and doesn't return until then. It's good to know where we stand and I know what we need to bring and got some good resources. I am officially sleepy and I still have to go change Riley and do meds. We have to be in Orlando at 9am so another busy day but busy is not ALWAYS bad. Sometimes we need to stay busy....