Where can I get more 'help"?? (long, sorry)

Or tell me if I'm crazy or projecting, becaue maybe I am.

I feel like Noahs slipping through the cracks right now.

I don't feel his speech is coming along that well, but it is progressing according to IEP goals so thats all that anyone cares about.

He has a severe fine motor delay ( grasping for ex.) ..He is in the 1% percentile. BUT..he has NO other fine motor or gross motor delays, so its "odd" and many people have told me a significant possibility of it being due to another type of disorder ( like Dyslexia)..

He wont eat, he is melting away, he has lost over 3 lbs in just over a yr.

He also is STILL having difficulty potty training ( he is 4 and 1/2) ...He wont poop in potty, pee is about 60 % of the time finally in potty.

He has anxiety issues, bad...we got him to a private child therapist through insurance, it is working wonders.

He is having issues with retention. He doesnt know his letters ( well he know on sight about 8-10) and he knows numbers 1, 2 and 3. He can count to 13 ( he has counted this high since he was 2 and 1/2 and has failed to get any further)...He cannot say the alphabet song.

YET other intellectual skills he excels at, he does have a great memory, he knows directions to places, he can do very hard puzzles, he is at least on age level with other learning tasks except for letter and number recognition and retention.

ANYWAY....The Ped said see a developmental Ped. We are "trying"...First the lady on phone with the one at Cohen's wanted me to go to somewhere else..the issues are not "for" a developmental ped, but I insisted and we are getting a packet to fill out and hopefully get an appointment.

But no one else seems to think any of this is abnormal and call me crazy but to ME..it is.

The school doesnt seem to think he is behind in learning, but everyone I talk to says he kinda is.

IDK what to do really.

I cant get help with the eating and potty training, nothing works.

And I cant seem to get learning help .

Do I ask for addtional testing? do I wait till he older, b/c its hard to diagnosis anything like dyslexia or Auditory processing disorder at this age?

Really I dont know WHAT I'm asking for, but does anyone have any advice? What would YOU do? OR tell me if I'm over reacting too?

THANKS!

Message edited 12/6/2011 4:22:30 PM.

Re: Where can I get more 'help"?? (long, sorry)

That must be so frustrating. The wishy washy answers of delay, not really but kind of.

I would gather all the reports you have of his therapists and in schools.

Then start seeing the progress, stagnation and regress. Make a list. Do timeline, etc..

It will be time consuming but you will get a much better picture to talk to people and you have reports to back up what you say.

Then, approach each therapist and flat out ask them to explain their report and ask why he might look better on paper than he really is. Either he is delayed or is not. While there are grey areas, it should not be on report. It should be clear what he is lacking in skills for his age.

Then go to the SD and ask what you want.

What are you looking out of the Dev. Ped? An eval? A diagnostic? To back up what you are saying and going to SD with their report?

Re: Where can I get more 'help"?? (long, sorry)

Re: Where can I get more 'help"?? (long, sorry)

You say he scored in the 1st percentile in fine motor skills, but has no fine or gross motor skill deficits, does that score reflect the grasping subtest of a test an OT did or a teacher? What services does he currently receive?

Re: Where can I get more 'help"?? (long, sorry)

I agree with everyone. First off, where does he go to school? What services is he currently receiving?

Re: Where can I get more 'help"?? (long, sorry)

Honestly, regarding potty training DS is not there yet either. We are OK on pee but poop is not up to par.

I was told by his therapist that 4.5 yo is a "standard" time for kid for special needs and potty training. And not uncommon to go to 5 yo.

So don't think it's only your DS.

Re: Where can I get more 'help"?? (long, sorry)

I would gather every report you have, from each service he recieves and maybe bring it to the district and show them everything.

I'm not sure if this would help, but, maybe a ped. neurologist? Maybe they'd have an answer?

As for potty training....DS will be 5 next month and rarely says "Mommy, Daddy, ...whoever...I have to go potty".
We have to remind him!

As for poops, same. Needs reminders.
We (family trainer and I) made DS a "potty book". It does help.

The eating is another "UuuugggH". We do a lot of BLT around here (Bite, Lick, Taste) and I if he takes a nibble of a veggie.

Offering

Re: Where can I get more 'help"?? (long, sorry)

Thank you all!

Right now he gets Speech 3x's a week, OT 2x's a week and he is in a integrated class 1/2 day 5 days a week.

His fine motor was grasping and some other hand strength test thatgot the 1 percentile
( yes a subtest) , everything else was in the average range. He has trouble holding a pen/pencil and writing his name , writing anything, drawing circles etc.

His speech has not been classified as anything but a "Delay"...they have kinda ruled out apraxia.

He is not on the spectrum at all.

He has sensory issues but appears to "growing" out of them. They were much more severe as a toddler , now as a pre schooler, they are not that interferent, and workable. They work on some of them in O/T , but don't focus too much. They dont label him as sensory processing disorder, more sensory "issues".

Re: Where can I get more 'help"?? (long, sorry)

I would ask for more speech and OT, but be prepared for them to refuse it. If he is meeting his IEP goals, I think you will have a hard time with the district.

I was told by my DS's school that even if he was approved for an additional OT, the school doesn't provide more than 2x per week for preschool, unless they have a physical disability (I don't remember the exact term she used but for example, a child with CP or a similar physical disability).

I would also take a good look at what the speech therapist and OT are doing with him at school. Maybe switching therapists would help? I personally would look into what it would cost me to get services privately at home and whether or not insurance would reimburse for some of it. We have problems with eating too, but not to the point that he is losing weight. My guy will eat and is growing big, he just has a very limited variety of what he eats. I think if I were in your situation, I might also look into getting someone to come to the house to do feeding therapy.

My DS is on the spectrum and one of the positive things about the diagnosis is that the district and the school have a way to classify the delays and seem to have specific services in place to provide. Without a specific diagnosis, I think it would be very frustrating to get them to listen and respond to your concerns.

Re: Where can I get more 'help"?? (long, sorry)

I would look into getting an OT who is CHT (certified hand therapist). Hand therapy is an area of occupational therapy and even sometimes physical therapy that a lot of OTs do not have expertise in.

The field of OT is so vast, I really wish they would break it down a bit since it's so difficult to find the correct fit for the the variety of "issues".

Perhaps your ds has low muscle tone in his hands (which is much different from strength)


You may want to approach your ped again for a thyroid panel and perhaps a panel for mineral deficiencies. Magnesium deficiency can cause a lot of issues, as well as other minerals. The "gut" could be causing his anxiety and eating issues. I recommend a DAN practioner/or doctor (even though your ds is not on the spectrum), for something like that.

Message edited 12/7/2011 5:05:07 PM.

Re: Where can I get more 'help"?? (long, sorry)

Donna, if you don't mind my asking, what are the speech issues he's having? I remember when you were concerned about apraxia. I'm wondering what his status is now with motor planning and how they ruled it out.

Re: Where can I get more 'help"?? (long, sorry)

It seems as if the frequency of OT is appropriate if its only grasp and hand strengthening and some sensory that needs to be addressed. It's very common for children to only exhibit those delays without any delays in visual motor or self care skills. You definitely want to stick to a Pediatric OT, not CHT. A CHT does not specialize in children, but All pediatric OTs specialize in hand skills. It's the biggest area we address in pediatric practice. Plus we have age appropriate equipment and activities. More OT is not necessarily better. What would help the most and would have the most impact on improving his skills would be to have the OT write up a homeprogram/activities foryou to use with your son and to have the OT consult with the classroom staff to make sure they are carrying strategies the OT should be giving them to use in the classroom. His pencil grasp will not change no matter how much OT he gets if his teacher doesn't correct it in the classroom throughout the day.
Definitely talk to his OT and see what she thinks about his rate of progress and ask what she/he thinks would speed up the process. Has she/he provided? You with activities to do at home?

Re: Where can I get more 'help"?? (long, sorry)

Some CHTs do work solely with the pediatric population. And although their main focus is usually on surgical recovery, they do have a strong background in a lot of medical conditions that could cause muscle and nerve issues in the hand/wrist etc.

I think the bottom line is to make sure that the OT who is working with your ds has a plan of action and is noticing subtle improvements. For instance, separation of fingers...moving from using the pinky side to the thumb side for grasping things. My dd only was able to use her pinky side as a toddler so it limited so much of her playskills and drawing.

I really like this OT's ideas. She also has has a lot of professional development. I know as a former teacher so much of my greatest strategies were from strong professional development courses and not just what I learned in my degree programs.

make-the-grade-ot.com/Fine%20Motor.html