New to the Diagnosis & happy to be here!

iVillage Member
Registered: 07-22-2007
New to the Diagnosis & happy to be here!
11
Wed, 02-17-2010 - 4:45pm

Hello! My DD is 7 and recently diagnosed with SID/SPD.

Background: She was a really mellow baby - go with the flow yet curious and never a shy moment. She sat up later - 7 months. Crawled at 8-1/2 months...then got up and walked at 9 months. (I used to think this was a great sign of her coordination but now I know differently.) She talked early and often. 30 words by 1st birthday and full conversations by age 2. She is very smart and has a tremendous vocabulary and a memory that shocks me every day! She is a BIG personality with a super enthusiasm for life and a never ending amount of curiosity for learning. She is absolutely NOT athletic in the least even teeny tiny bit. She has difficulty throwing or kicking a ball. Cannot ride her bike, has zero body awareness and falls all the time.
We figured that physical activities just weren't her thing. No biggie.

Once she entered preschool/kindergarten we got positive feedback from her teachers. She's a bright little girl they would say. But she needs to learn when to zip it. (She's a chatterbox did I mention that?)

Well...this year she entered first grade. And it has been a HUGE struggle. The first week she was sent to the quiet room twice and the Principal's office once and came home with a "fix it" plan. Sept and Oct we received several phone calls from the teacher explaining how DD has difficulty focusing. She can't sit still. She falls off her chair. She seems as though she doesn't listen. She cannot pick up on visual cues of the other kids in the room so she's always several steps behind.

I have to admit. I was heartbroken. Here is this really smart kid whom we assumed would start school and just "own it" you know? And her intelligence was being completely overshadowed by her behaviors.

It was suggested that we have her tested for ADD/ADHD. We filled out the questionnaire as did her teachers. Yep...they indicated a tendency. In my heart though, it just didn't fit. My kid is a klutz! That doesn't mean she's ADD" I kept saying.

Long story short....at her well child check up her Ped noticed that her BMI rose to above 95% (her whole life she has been at 90 for height and 95 for weight...she was 9 lbs 11 oz at birth). So she sent us to a Ped Endocrinologist for testing. Her blood work came back clean. But the Endo mentioned a special program that they were getting ready to start that helped families deal with childhood obesity. we signed up thinking we could all learn how to be a little healthier. Part of the intake into the program is an eval with a PT. She put DD through the tests and then asked, "Does she have trouble focusing in school?" And then she mentioned Vestibular Hyposensitivity and it was like a ray of sunshine came down from the heavens!
(One interesting side note: there are 15 kids in the class and all have elevated BMI's. And interestingly enough - all show some level of SPD.Kiddos with SPD have a hard time being physical so they seek out sedentary activities...and then their BMI's go up - VERY interesting I thought!)

We had her OT eval two weeks ago and sure enough - she has SPD - vestibular and Proprioceptive Hyposensitivity - low muscle tone and fine motor impairment.
We are waiting for a spot to open up in OT and then we'll go once a week.

I'm so excited to see changes in her already. When we explained to her what Sensory Issues are and how they are affecting her at school her words were "See. I TOLD you I couldn't help it!" (That broke my heart.) We have started "squishing" her with a therapy ball and giving her massages before school in the morning. And low and behold - we've been getting very positive feedback from the teacher already!

Anyway, that's our story. I'm happy to be here because in my mind SPD/SID is a manageable thing. It's not always going to be easy. But how lucky are we that we have an answer and that the therapies to help our kiddos are massaging, hugging, playing with our kids! I look forward to getting to know you all and to learning with you!

Jen

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iVillage Member
Registered: 09-12-2008
Sun, 05-23-2010 - 7:25pm

Hello and welcome. You should definitely have you son evaluated. SID can interfere with social skill development. Getting answers now could really help you better understand what may be going on with your little guy.

If you have any other questions...please feel free to ask.



Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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iVillage Member
Registered: 09-27-2007
Thu, 05-20-2010 - 8:52pm

I just came across this board and saw your thread. I am seriously wondering if my son has proprioceptive SID as well. WHen I read the checklist for it, he fit most of the items.....he has always been VERY aggressive and seems to be unaware of it, he is rough with toys, pushes too hard with crayons (most of the tips break off), constantly in motion, talks too loud, no impulse control, pushes past other kids all the time, has trouble with grabbing, loves swinging upside down, etc...


He is also very bright with an amazing vocab for a 3 1/2 year old. Strangers comment all the time about the things he says. He used to be pretty shy around people he didnt know but recently has started breaking out in conversation with just about anyone. And finally has started playing with other kids but I think his aggression definitely gets in the way. We have been very consistent with consequences, reminding about the rules but nothing seems to curb this behavior. He does love deep pressure massages, back scratches, hugs, and is very affectionate. Thinking about getting him evaluated....


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iVillage Member
Registered: 04-21-2008
Wed, 02-24-2010 - 9:45am

Welcome to the board! I have a SID first grader too, so I can definitely empathize. :) We just moved across the country, DS is about 2 months into his new school and is struggling to fit in and make friends. It's hard!

Hope to see you around more!

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Registered: 09-12-2008
Sun, 02-21-2010 - 10:20pm

To get the school to do an OT evaluation you have to request one. I strongly recommend doing that in writing. Make sure to make a paper trail. Even if your daughter's teacher is willing to help you will still want to have that paper trail in case something comes up. I know it sounds silly and like I doubt the school's....but it is something everyone will tell you when it comes to IEP's and getting help with the school. Here is a great website for educational law. www.wrightslaw.com. There is a load of knowledge on their site.

The school can also do a full psych evaluation. When they do that they will test her IQ along with other tests. It should give them a good idea where she stands accademicaly and socially.

This is a letter that I wrote to Gabe's school when I requested a full psych/ed evaluation for him.

Dear ______________,
As I am sure you are aware Gabriel carries a medical diagnosis of autistic disorder, sensory processing disorder, apraxia of speech, language impairment. At this time Gabriel's father and I would like to request a full psychological/educational evaluation. Please include a full OT evaluation as well. There is no need to retest his speech/language as this was just tested less then 6 months ago. Please inform as to when this testing will take place. I look forward to hearing from you soon.

Thank You,

The school has 60 days from the time they receive the letter to test the child.

If you have any other questions please feel free to ask. Have a great night.



Jessie mommy to Gabe(4.6 years ASD/CAS/SID)and baby Zane



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iVillage Member
Registered: 12-18-2008
Sun, 02-21-2010 - 1:52pm

Hi,


As for getting an IQ test, we simply

iVillage Member
Registered: 07-22-2007
Sun, 02-21-2010 - 10:15am

It's funny you ask if I think she is "gifted". Yes, I really do.I don't think that she is a genius. But I do think that she has a higher than average intelligence.

But I think her intelligence is often overlooked by those in the education system because of her behavior. All of her life friends and family have commented on her intelligence but no one in the school system has.

My husband and I would really like to have her IQ tested...just so we know and so we make sure that she's being challenged etc. But we have no idea how to go about that.

She has a real drive for learning facts about things. I think part of her problem with first grade is that it is kind of boring. Learning to read and basic math without much "fact learning".

I know what you mean about jumping and singing. DD is always doing that too...and spinning! She can spin for hours and never get dizzy! Say, did your DD suffer from frequent ear infections at all as a baby? DD had 9 of them in her first year of life. Then she got tubes and we solved that problem. But, since the vestibular system relies on the ears so much I'm pretty sure that had something to do with it.

And I'm right there with you on the emotional issues. DD has a hard time with that too. Especially when we don't give her a heads up when it's time to leave somewhere. She will have a tantrum about leaving a party or a friend's house etc. But as soon as we buckle her in to her seat...it's like someone flipped a switch and then she's fine. She has breakdowns at school too during some transitions. She's a very enthusiastic and passionate person...which is great when you're at the positive end...but then comes the crash! OY!

She's a pretty healthy eater. She has peanut allergies as well so lots of the "junk food" is out of the question. Her main weakness are goldfish crackers and fruit snacks. But she eats a lot of things that some grown ups won't eat - like pesto and sundried tomato pasta! I think her weight issues mainly stem from her lack of activity.

I know what you mean about younger siblings and their abilities. We also have a 21 month old DD and she can already do things her sister cant. She can throw a ball better and hang from monkey bars already. She's also very verbal! (HELP!) :) At 18 months she was up to 130 words...and then we stopped counting. (I doubt I'll ever get a word in edgwise again!)

So, was your DD a climber at all? Mine never once tried to climb out of her crib. She didn't get into a big kid bed until she was 3-1/2! I thought I'm just going to leave her in the crib where I know she's safe for as long as possible. But it got ridiculous when the bar was below her belly button! :)

Is your DD a good sleeper? Mine sleeps like a champ! However, in order to do so, she has about 50 stuffed animals in bed with her kind of tucked all over. She said without them it feels too loose. I just let her do it...it's not a battle I feel like fighting yet.

iVillage Member
Registered: 07-22-2007
Sat, 02-20-2010 - 7:47pm

Thanks Jessie!

DD does not have an IEP currently. We've only had the diagnosis for a few weeks...and I'm working on getting an appt with the appropriate people at her school. (One of them is only at her school on Mon and Wed) Her teacher seems really open to trying new things with her. She has a disco-seat that she lets DD sit on and she has some thicker pencils that seem to help her with her grip. But that's it so far. The communication with her teacher has been great this year so I know she's open to trying whatever we need. I feel blessed there!

So what are some tips with dealing with the schools? I'm so new to this. In fact, it's weird to think that now that we know this it means I have a child with "special needs". I just think of her as my kiddo...but SPD means she needs some additional help. Any suggestions as to how to make sure she gets that?

THANKS!
Jen

iVillage Member
Registered: 12-18-2008
Sat, 02-20-2010 - 11:40am

Hi,


Thanks again for your

iVillage Member
Registered: 09-12-2008
Sat, 02-20-2010 - 10:34am

Hello and welcome to the board. It's great to have you here. I am glad you finally have some answers for your little girl...and it is wonderful that she is showing a positive outcome from the sensory diet that you have started.

Is the school helping you in any way? If she is having trouble in school with sitting, maintaining posture, writing, social cues, falling behind, then she should qualify for an IEP (individual educational plan) It is plan that you and a team of professionals from the school come up with to help your daughter access her educational potential. From what you have posted it really sounds like the OT at the school should be helping her.

If they aren't. You can request in writing a full OT evaluation for fine/gross motor delays and sensory issues. The school might try and say they don't have the resources to help your daughter....they do....

If getting help from the school is something you are interested in....please let me know and I can help you anyway possible.

Again...it's great to have you here. I hope your daughter keeps moving forward now that you know how to help her. Yay to you mom for finding an answers to your daughter's needs.



Jessie mommy to Gabe(4.6 years ASD/CAS/SID)and baby Zane



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Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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iVillage Member
Registered: 07-22-2007
Sat, 02-20-2010 - 9:58am

HI! I'm so glad we found each other! Our kiddos sound like two peas in a pod!

In kindergarten and preschool she was reported as being super social and very chatty. But nothing too serious or interruptive. Her preschool teacher said this will probably be her thing to deal with (being uber social and uncontrolably chatty)

But both of those years she was only going half days. The real problems with focus and sitting still without sensory seeking came in first grade this fall when she started full days of school. Her teacher just said that she couldn't sit still, didn't seem aware of her body and always fell against her friends, couldn't stop fidgeting etc. She's still overly chatty, but she's getting better at knowing when to "zip it" So it wasn't really until first grade that her behaviors started to impede her life.

Her fine motor skills show up the most in her handwriting. She HATES handwriting (she tells me that all the time!) It's very difficult for her to write her letters...especially rounded ones like lower case o, a, e. She also has trouble drawing a 4 corner square or a closed circle. (This shocked me! I had no idea! They told me this after her eval.) She was never one to color as a toddler or preschooler. She would scribble some colors on the page and be done. Now she colors just fine and stays in the lines, but apparently the OT said she does this after turning the page to maintain accuracy. Hmmm I do that too...doesn't everyone? :)

She has difficulty tying her shoes and zipping her coat. And therefore she gives up very fast and we end up doing it for her just to get out the door. She can get dressed, but often times things are twisted (drives me crazy) but she doesn't seem to mind! :)

Oh honey, don't worry...your kiddo will probably remain to be highly verbal. I know mine has! We used to have tons of fun teaching her big words when she was little because she always remembered them. Fun parent bragging tricks. She knew what Symbiotic, bioluminescence, and cartilage was at age 3. Of course it helps that she LOVES anything to do with animals/sea creatures! She learned those words from our animal encyclopedia that she made us read every day. (It's an adult encyclopedia - not a children's one!)

At age 7, she's still very verbal and has an advanced vocabulary I believe.
Academically she's doing just fine. They are supposed to be reading at a level "8" at this point in the year and she's reading at a level "10". She's also doing great in math! She continues to struggle in handwriting...but she's attempting more and more. Earlier in the year her stories were, "We got our Christmas tree today." and then she'd draw a picture of a tree.

The other day the teacher gave me one of her recent stories: "Chapter 1, the Super Bowl battle was about to begin. Who would win? I was nervous, would the colts have enough points to win?"

Of course most of the words were misspelled, but we can totally hear her voice coming through now! Huge progress! Her verbal stories always sounded like this...and now it's coming through in her writing! YAY!

I wouldn't see your kiddo's chattiness or intelligence as a disorder at all! I guess if her ability to focus at times is at question that's another thing. My DD can focus at times no problem. She also loves story hour. In fact, she has sat and listened to to me read the first three Harry Potter books out loud to her! She makes me read so much I lose my voice sometimes! :) It's when she's asked to sit still and focus (and write) at school that the problems arose.

So have you gotten a diagnosis yet? What times are the most challenging for your kiddo? One thing that has helps us tremendously is to squish her with a therapy ball and then give her deep tissue pressure through massage. I Start at her shoulders and pull my hands down her arms to her hands and then I pretend to "throw the wiggles away". Then I rub her legs the same way and end with a nice foot massage. (I wish someone would do this to me every day!)
Her PT also said if she's having trouble at school that the teacher should come up behind her, put her hands on DD's shoulders and just gently but firmly push down a few times to "remind her where her body is".

Another thing that we just discovered is blowing bubbles. OH MY GOSH! She LOVES TO BLOW BUBBLES. The PT gave us a rubber hose and we are to fill a bowl or pitcher with water. then she has to put the hose in her mouth, other end in the water. Breath in through her nose and out through her mouth as slow as she can and blow bubbles for as long as she can. A few times of this and she's the calmest kid around!

Hope this answered some of your questions. Please feel free to ask more if you have any. I'm excited to learn more about your DD too! 3 - almost 4 is such a fun age! Even if your head spins from all the chattiness! :) Do you ever find yourself driving in the car and nodding your head and saying "oh...Wow!" as she blabbers on and on in the back seat and suddenly you have NO IDEA what she's saying? Yep...been there! :)

Take care!
Jen

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