Hi, I am Ellie, a new member. Glad to find this group.

I have 5 yr old DS, diagnosed 11 months ago with Sensory Issues, but I call it SPD. He just started Kindergarten. He is amazing, funny, cute, talkative, and I love him so much. He sees a psychologist every two weeks, and her diagnosis for him is anxiety. We went to OT every week for the last year. Then over the summer, we did a picky eater group at an OT, so I took that time off from regular OT. Now, I'm trying to decide when and whether to go back to regular OT. Also the psychologist has suggested a social skills group, but I feel we might be putting too much on his little plate, so to speak, because he only did half-day preschool, and KG is such a big adjustment. His meltdowns after school these past three weeks, have been big and ugly, and I haven't seen these behaviors from him in awhile. So I hesitate to add too many after school activites, even OT - anyone else struggled with this?

Also, I have not told his teacher about SPD. I have not met with her. My understanding was SPD isn't treated with an IEP, unless we have another issue as primary, such as a reading issue, or whatnot. Also, the teacher is new, her first year ever teaching, and I feel I'm not equipped to explain SPD to a new teacher. It must sound weird to someone who has not encountered it. I am filled with anxiety, wondering what sypmtoms and behaviors he is doing in class, but he has been getting good behavior stickers every day.

DS is a combo - seeker/avoider, low muscle tone, sensitive to loud noise and bright lights, does not like changes or transitions, and become overwhelmed in a minute. I always knew something was off, but never heard of SPD until last year. Looking back, it is crystal clear; even in utero, he flipped out madly at fireworks once - so much, we decided to leave. I spend a lot of time avoiding and planning ahead. Wow is this fun to type this to people who get it. I feel none of my friends or family really get it.

I also have twin 3 yr old DDs. I love my family, like art, and quiet alone time, reading, and learning new things. Thanks to every one of you on this site, just by being here, it is validating SPD and I am excited to be here.

Hi Ellie! You are in the right place! My older son has SPD and anxiety. My younger son was just evaluated on Sept 13th but don't have written diagnosis yet. My older son has had an IEP/504 since 1st grade.

If you don't mind, I'll copy and paste my post from the school section in the general SPD area:


"Post: #2RE: IEP or 504 plan ?
I think my son actually has a 504 plan, but I always call it an IEP. I'm not really sure what the difference is because he's getting all the things he needs from school. I'm so incredibly happy with the resources he has gotten over the last 4-5 years.

In Kindy, the social worker worked with him in the classroom to model social behavior for him. (This was before a diagnosis and before a plan was in place.)

In 1st grade, his teacher, principal, social worker, OT, special education teacher met to discuss his needs and what plan would work best for him. The commotion at the start of the school day with kids coming in from their buses and putting away their backpacks really overwhelmed and upset him (having a meltdown), so they had an aide get him from the bus and take him to the playground for 5-10 minutes of swinging. By the time he got to the classroom, things had settled down and he could handle it. He had about 3 other motor breaks during the day. He would go to the OT room to do: mini trampoline, punching bag, wheelbarrows, sitting scooter thing, or other activity. End of day was overwhelming too so he'd go with an aide to either swing or read a story in the library. He also started having sessions with the Special Ed teacher.

That was the plan for 2nd grade as well, maybe fewer OT breaks during the day. The people I listed meet every 6 weeks to discuss all the kids with plans, see if things are improving, meeting their needs, not meeting their needs, what to change, what to keep. Then once a year hubby and I go to a meeting with them to review it all.

They did a full academic testing in maybe 1st or 2nd grade (??) to see how he learns, to work on an academic plan for him. He gets tested every 3 years.

I just noticed that I forgot to add that he continued to see the social worker twice a week to work on social behavior. I think it was in the classroom and in her office.
Lynn
mom to 2 boys, one avoider and one seeker

07-31-2011 09:59 AM
Joined: Dec 2010

Post: #3RE: IEP or 504 plan ?
Just wanted to add:

His plan changed as he got older. He got less and less OT and more academic help. He's great with math but his writing skills really needed help. He's slightly behind with reading but seems to be catching up, he's just about at grade level. His main issue is timed tests and activities. So he's allowed more time or untimed tests, like for the statewide mastery tests.

He continues to meet with the social worker to develop his social skills and to help with his anxiety."

Yes, definitely good to avoid triggers and plan ahead. Your son sounds a lot like my older son. Mine also has a hard time with transitions and changes. My son has been in social skills group since he was 7 or so. I highly recommend it once things get better. Your son is probably holding it together at school and letting it out at home. Hopefully once he gets settled in, his meltdowns will lessen.

I want to write more but I gotta go for now. I definitely want to ask YOU about picky eater!

Thanks Lynn! I feel better reading your post. When I meet with his teacher, I just don't like feeling like I'm the only mom on this path - thanks.

Picky eaters: We did one on one OT for that for awhile, but it never worked. Then I happened to find a GROUP. That is the key for us. We go for 90 minutes, 1x week. They play with the food, he comes out covered in stuff - they can just tap in on their teeth, or at the end, they can take a bite, and spit into the trash, they love the spitting. Somehow it's lowered his food anxiety. His main thing was he would never TRY a bite of things. He won't try a whole lot, but he will try some now. That has been really exciting. One neat fact I learned was, the OT said, 99% of the extreme picky eater cases she has encountered, had reflux as infant. I didn't think my DS did, but looking back, I called it SPITUP, so he totally did. Can't change it now, but it created a lifelong food=pain association. I like knowing this stuff, it relieves the mom guilt, that I have not fed him exciting food or whatever, that it's my fault.