Help me help my son

[momtoTnT]

So, I've started this thread so many times....hopefully I'll actually be able to put my thoughts down clearly enough to be willing to post them, and get some help/advice. I'm also doing this at work, so hopefully it doesn't seem too disjointed...

My DS is 6 and in the 1st grade. We've got an appointment in October to have a full neuro-psych eval done. This all started last year in Kindergarten when his teacher told me she thought he had some delays in his fine/gross motor skills. She called them "significant" - we went to a pediatric OT and PT (as well as consulting with our primary doc) who said that he has some delays - but nothing significant - his OT found him to be well within the normal ranges for everything, his PT found him to be within the low-normal ranges (15% or so on things like core strength). THEN the teacher said he was having behavioral issues and put him on this program that didn't work at all. She took away his locker for not being "good" in the hallway - he had a laundry basket to use in the classroom until he could earn it back - he never earned it back...she never told him how. Then she said he wasn't doing any work. That he couldn't focus. He has no impulse control. He was doing things like snipping paper into tiny pieces when he was supposed to be cutting things out. She did say he's "freakishly smart" and all of his report cards last year indicated that he was either at or above grade level expectations. She disagreed 100% with what the PT/OT told us. We had a meeting with the "building team" at school, and the first thing the principal said was "it sounds like ADHD or ADD to me" and then also told us that our doctors were wrong for telling us that a lot of what DS was doing was age appropriate, but immature for his age. The school psychologist evaluated him again - did a Connor's (we did/the teacher did) and then also did some IQ testing. The report summary I got back from the psychologist at school said that he was average to above average in all areas (98% for verbal skills for example) but that he "most likely" had ADHD. The psychologist then said that most doctors will give a diagnosis based on what he said, but they can't give him any services without a diagnosis from a doctor....I was given the impression that the school psychologist is of the opinion that DS needs to be medicated and it needs to happen ASAP.

So. I consulted with our doctor again. She doesn't agree with the school at.all. But she did agree to "dot the I's and cross the T's" and refer us onto the neuropsychologist as well as a behavioral psychologist. By the end of last school year, my DS had developed quite a number of fears - the worst one is that he refuses or is unable to be alone in any room of our house - at one point, he wouldn't go to the dining room table to get something when I was 15 feet away in the living room - no walls to separate us - the only thing to differentiate the 2 rooms is a change in flooring.

We've been working with the behavioral psychologist primarily on his fears - which improved about 1000% the second that school let out for the summer. We're now into the 3rd week of school and at first I thought it was better. He has been enjoying school, his fears haven't ramped back up, and we haven't had any calls from the school.

Which brings me to now. I checked in with his new teacher last week, and he said that he had noticed some things going on with DS, but didn't elaborate since there were a ton of people in the hallway. I was finally able to touch base with him again on Monday of this week, and then again today and what he's noticing with DS are the following things:

DS often talks very loudly.
DS licked a couple of his classmates, then himself (I asked DS about this - he said it was a game and wouldn't do it again. Then this morning his teacher said he did it again yesterday)
DS chews on his shirt (DS told me/his teacher today that he does this when he's upset/nervous about trying something hard)
DS stares into space or is distracted - (but then can later recite most of everything that was said. However, if you ask him right away what has been said he says "I don't know"
DS was supposed to be cutting and pasting something yesterday and instead cut a piece of paper into hundreds of tiny pieces as well as gave his bear (for show and tell) a haircut.

For the most part, he doesn't do any of these things anywhere except at school. All summer, his daycare provider was paying attention to these sorts of things (she's a friend of mine) and she didn't notice anything unusual. I know I need to be patient and wait for the appointment in October, but I'm having a hard time not doing something or working on it or....trying to fix it I guess.

How can I help my boy get through this? I honestly have no idea if it's ADHD, if it's nothing, if it's something else, or if I'm not able to see it for what it is because I'm his mama....I think he's fine. Last year, I was fairly convinced the teacher/school was picking on him, this year, I'm not getting that impression from his teacher at all....

Sorry this is soooo long. I'm not even sure what I'm asking for or looking for. Advice, BTDT, sympathy....UGH.

[LauraLoo]

I couldn't read and not post. This all sounds so familiar with what we went through with our ds in K.

Originally Posted by momtoTnT

My DS is 6 and in the 1st grade. We've got an appointment in October to have a full neuro-psych eval done.

You are doing the right things - consulting with your pediatrician, OT/PT's, etc. and I wouldn't do anything until you have a chance to meet with the neuropsych. Going from K to 1st grade is a big change and it sounds like your ds is handling the change quite well. If he isn't appearing to be engaged, but can tell you what was taught -- why is that a problem? It's quite likely that from his test scores that he is not being challenged and finding ways to fill in the time. That's my hunch.

FWIW -- when we finally had our results of testing in, our pediatrician offered and went with us to the school to meet with the team. Unfortunately, nothing that we said or did seemed to carry any weight *until* the pediatrician showed up. And then they got off our backs.

GL! I know how nerve wracking this can be, but Oct. will be here before you know it.

[justKate]

October is very close. I don't have experience to draw upon, but I can tell you that your son's behaviors sound a lot like my own at that age. I was horrifically bored in school, socially awkward, and terrified of tall windows. Now I'm a lawyer.

So nothing to help here, but I didn't want to read and not post. I hope that the answers you get bring you comfort. s

[SoCaliMommy]

If the school did a evaluation on him and came to the conclusion he met the cut off for adhd then they have to do things to help him, and he would probably qualify for a IEP.



hope the school starts to do things to help him after you get the evaluation from the neuropsych done .

[Emmeline II]

Except for the anxiety issue at home this sounds a lot like ds (and his K teacher ). We did the OT eval at the end of K last year and are waiting on the neuropsych appointment (actually the paperwork to get the appointment) at the local Children's Hospital.

Two weeks before school started ds was playing with matches in a closed bathroom, which concerned everyone, and we took him to a psychiatrist--I tried contacting psychiatrist last year but they said they didn't see children that young, so either the 3 I found this summer weren't on my insurance yet or I just suck at using their crappy doctor search.

His psychiatrist saw ADHD right away and possibly Aspergers as well; ds is taking Concerta now and doing well in first grade at a new school. Thankfully his new school is more interested in teaching to ability and his teacher hasn't wasted any time nominating him for the gifted program (K teacher talked about it but apparently didn't take any action on it); I just signed the permission to test form today.

Also, ds has a 504 in place now. My understanding is that a diagnosis is helpful for getting a 504 in place, but for an IEP you need a specific diagnosis.

...and we started ds on a magnesium supplement at the end of the year in K, it took the edge of his most hyper/impulsive behavior.

Sensory Processing Disorder Checklist

504S
http://www.greatschools.org/special-...ent=868&page=3

IEP
http://www.greatschools.org/special-...gs?content=513


Quoting myself in another thread:

We tried a family therapist for awhile and pretty much just figured out that our discipline style did not really impact his behavior; though too lenient or strict made it worse, the middle ground did not make it better, just not worse. Ds appears to have little intrinsic motivation to "do the right thing" and lacks in empathy; though these seem to have improved with medication.

Kindergarten was hell; I'll pm you the bullet list I took to the family doctor for a referral to a developmental pediatrician. Though ds' behavior at home improved immensely after a couple months of school.

So, we went to the family therapist from February to May. In June I took my bullet list to the family doctor who diagnosed ADHD/ODD on the referral form; I sent the referral form to the local children's hospital that has a clinic with a developmental pediatrician--once an appointment is had it is a full day of interdisciplinary consults and evaluations.

While waiting on the DP we had an evaluation with an occupational therapist in July; this report was very useful in communicating what ds is like, to his teacher, therapist, and psychiatrist. The OT noted his sensory issues but also said she say signs of Asperger's but she is not qualified to diagnose that.

In August ds freaked out the family by playing with matches in a closed bathroom and we finally took him to a child psychiatrist. The psychiatrist diagnosed ADHD but is not ready to diagnose Asperger's yet; she also recommended "psychotherapy"; I found that the therapist she recommended does CBT and we're hoping that ds will benefit more from her than the last therapist, though she did mention how "unique" ds is in his issues. Ds is now taking Concerta.

Ds school experience this year is MUCH MUCH MUCH better than last year. Though he is still exhibiting the same "quirks," he is now redirectable. His new (charter) school is much smaller, he has a more understanding/flexable teacher and a special ed person who actually sees ds issues as something to be addressed with actions other than behavior charts. Ds is also gifted which complicated things with his last school (which is primarily concerned with working on grade level, anything beyond that they didn't care).

Edited by Emmeline II - 11/16/10 at 1:40pm

[momtoTnT]

Thank you all for the support and information.

LauraLoo - Your hunch is my hunch too. Plus when you throw in the anxiety, and his immaturity, well, it makes things harder.

Thank you JustKate. Everyone who knows DS has told me that he's going to be an awesome adult (which of course is true - he's an awesome kid!)

SoCaliMommy - that's what I thought too. The school is refusing to budge at all. When we first had the fine motor/gross motor skills issue come up, the school psychologist told me that the only service they can give without an official diagnosis is speech therapy (??).

Emmeline II - your info was so helpful, and I'm sorry you're going through some of this too. I do need to look at the 2 links you posted about IEPs/504s more closely - thank you for providing that.

We've done all the checklists - he doesn't seem to have anything sensory going on. Just prior to school, our doctor had us fill out another checklist/assessment to see if it pointed to anything -there were some areas she said pointed to ADHD, but not enough to qualify as having it (like he talks ALL the time. He argues with adults. He sometimes has gotten physically aggressive - only with his sister. He is fidgety, but not all the time. He interrupts. Can't take responsibility for his misbehavior....)

He is very sensitive - when he is happy, he's happy (which is about 98% of the time) but if he's mad or sad, he can't let it go.

The teacher also told me that he's distractible (which we knew) - the teacher also said that ALL of the boys are. So I don't know what is age appropriate and what is not. He told me yesterday that DS can't always follow directions - such as "finish this math problem, then read books until I can get back over here to give you the next problem" - DS just read the books. I don't understand why he would have given DS the temptation to get distracted?


His appointment is in 3 weeks. I'm really hoping to have some answers then. Until then, I guess I just have to breathe and take it one day at a time. I'm thankful that so far, his teacher doesn't seem to have a bias against him, like his teacher last year did. That was hard.