[mommytoEli]

Originally Posted by Parisnroc

I'm joining the club, not by choice, but God has entrusted me with our breautiful daughter and I will do all it takes to give her a happy, healthy life.

She has only been home a month. Today is her first birthday. She is severly delayed in every way. We attribute most of her delays to neglect, malnourishment and lack of stimulation. She was also diagnosed with SID/SPD. She won't grab anything with her hands and constantly looking around. Those are her major issues right now with SID/SPD. Whether anything else arrises is yet to be known. She doesn't sit up, crawl, and definetly not walking. When I brought her home she wouldn't eat baby food and is know eating stage two foods minimum three times a day. It's been hard to identify between her developmental delays and SID/SPD.

She is a very happy little girl and welcomes interaction from others. We are so blessed to have her.

i meant to say this a while back....this sounds like eli when he came home. he never did eat babyfood! and still won't eat many smooth foods. silly guy! he will eat pudding, ot said let him eat lots of pudding if he likes it bc maybe it will help him start to eat other smooth foods. it caught me off guard.....i never in my whole life would have thought a doctor would tell me to feed my child more PUDDING! lol

[kimbo1]

Originally Posted by angelkisses0102

MommytoEli...
[font=Comic Sans MS]
Kimbo~
Can you repost your blog entry here? I would love to read it but all blogs are blocked at work...imagine that?! Like they expect us to actually work at work. LOL!

Sorry it took me so long to repond!

Here is my blog entry!
Occupational therapy!!!!

Wa Hooo, as my hubby would say!!!!

Since Natty has been home, we have noticed what we think are small tactile issues with him. Tactile, as in, he prefers not to be touched.

We have also noticed that he has been “behind” in developmental milestones….
like slow to sit up, raise head etc.

Most likely, these delays are due to being born at 34 weeks…..
but, sometimes you just don’t know all the reasons…..
my guess is, God knew we needed more “training.”

Early this morning….
(well, if you think being showered, dressed, &
breakfasted & out the door by 7:45 with a baby is early-ha!! ha!!!!),
we met with his occupational therapist for the first time!!!

I walked out the door with info on how to help a child who is “Tactily Hypersensitive.”

YEAH!!!!


I am so excited to FINALLY have concrete things I can DO with him to help in these areas!

If you’re really interested in what we will be doing with him, read the following boring, medical information. Hee!! Hee!!! If reading boring medical information does not appeal to you, scroll down anyway & see the adorable pics I took of him just this morning.




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We are supposed to do the following routine every 2 hours…at least 3-4 times a day:

The Wilbarger Protocol:

1. Brush all his extremities & back firmly with a soft brush.
2. Do 10 joint compressions each with his shoulders,
elbows, wrists, hands, hips, knees, ankles, & chest.

Apparently, the goals of this (the Wilbarger Protocol),
along with sensorimotor activities we will be doing, will:

1. Reduce sensory defensiveness (ie….crying when touched)
2. Help him be able to respond more appropriately to stimuli-
(teach him what’s pleasant & what’s not).
3. Promote optimum level of self-regulation & behavioral organization.

Here I am getting started today!!!!


Anyone else have to do this type of thing w/ one of their kids?
Did you notice improvement?
I can’t wait to see him begin to TAKE OFF!!!



Yes, I know he's playing with a dress-up shoe.


What can I say? We need BOY toys!








Please tell me I'm not biased & I have one of the CUTESET kids EVER!!!

OK, thanks!

What do you think? Do I need a membership? lol

[Lauren57]

I am mostly a lurker these days, but I have been reading this thread. My son is almost 5 1/2, he came home from Guatemala at about 13 mo. He was diagnosed with SID at 4, but I actually suspected it before then. He is sensory seeking in most areas, likes to swing, constantly jumping/crashing into things, has had a tendency to throw himself on the ground when he is overwhelmed or first thing in the AM or after nap. On the other hand, he is very sensitive to smells/sounds, and can become easily overwhelmed in crowds, which often means that he "clings" to me in situations like playgrounds, birthday parties). The most frustrating aspect of this for me has been people's assumptions that it is behavioral ("he is too hyper" or "he is too clingy"), combined with a difficulty in getting a diagnosis. He was always ahead in milestones, so never qualified for EI; when I talked to MDs about it they would typically say that they did not feel he met the criteria. We finally had an eval by an OT who specializes in SID. Michael had therapy for about a year, and was discharged in April. Now most of what I do is accomodations...for example making sure we get to social situations first, so he can adapt, and going to playgrounds before times he needs to not be as active. He had made a tremendous amount of progress.
It is great to hear others' stories because this is so complex and so frequently misunderstood.

Lauren, mom to Michael, 5 1/2, home 4 years

[dylav]

My son was brought home from Guatemala at nine months. He is severely speech delayed and they are considering it to be Apraxia (motor planning disorder). We have really been focusing on his speech.

However, along with his speech disorder, he does not sit still and is extremely hyper in large spaces. He will knock over book shelves at the bookstore. Take all of the groceries out of the shopping cart and smash them on the floor; run like crazy in a new home. He is a MAJOR thrill seeker. I can't really take him anywhere ( I feel like I am house bound) I have spoken with his speech therapist who is contacting an OT to see if he needs to be evaluated again. He was evaluated at 18 months and did well (I think it was a fluke). I am glad I am not the only one out there. I hope there is some information that parents going through this diagnosis can help me with...web sites, books advice on the hyposensitive child would be great.

[mommytoEli]

Originally Posted by dylav

My son was brought home from Guatemala at nine months. He is severely speech delayed and they are considering it to be Apraxia (motor planning disorder). We have really been focusing on his speech.

However, along with his speech disorder, he does not sit still and is extremely hyper in large spaces. He will knock over book shelves at the bookstore. Take all of the groceries out of the shopping cart and smash them on the floor; run like crazy in a new home. He is a MAJOR thrill seeker. I can't really take him anywhere ( I feel like I am house bound) I have spoken with his speech therapist who is contacting an OT to see if he needs to be evaluated again. He was evaluated at 18 months and did well (I think it was a fluke). I am glad I am not the only one out there. I hope there is some information that parents going through this diagnosis can help me with...web sites, books advice on the hyposensitive child would be great.

i have one word for you.

STROLLER.

lol....i'm kind of kidding and kind of not. when i know that i have to take eli some place, i take a stroller....and then when i buckle him, i cross the straps over his body so he can not wiggle free his arm and cause chaos. i also can not use the double stroller bc he will reach through and hurt the baby instead. i hear you about the groceries...he will reach his arms back and get the things, and throw them on the ground. reach to the shelves and throw things on the ground....but in the stroller, not so much. it does require more than just me obviously...and if i have to be by myself, i typically don't go out. i order groceries in, shop online, and tag team with dh for appointments. today i let him outta my sight while i peed. in addition to climbing on some furniture he hit my other son upside the head with a truck and colored the screen of the computer....all in about 60 seconds. i put him in time out on his bed for 2 minutes, came back, somehow he escaped and was playing ducks in the toilet. then i remembered my friends telling me this would not work and remembered i thought they were right.....i keep sabotaging myself! i am trying to enact a positive reward system....but i find myself running so fast all day just to keep up with him that i wonder when i will ever get anything set up. it is like i need a day without him to prepare for him. lol. i love him...but he gives me a run for my money!

i also need to order some books to read. people suggested some on this thread to me: need ideas for behavior management for eli

the other is the out of sync child.

then someone sent me a list of about 4 more...and i can't remember where that is... i will look for those titles.

[mommytoEli]

welcome newcomers......lauren57.....i worry that will happen, that eli won't qualify for services. he NEEDS them. i am hoping they will consider him delayed for the facts that his toe walking is so bad he can not walk properly and injures himself frequently and that he has feeding issues that are dangerous. i can't imagine his walking and eating abilities to be similar to that of other 2.5 year olds....so i'm hoping we will get some help. i might cry if we don't bc our insurance does not cover OT.

[akasohappy]

Our son had some sensory issues that were finally addressed in Kindergarten. Up until then I thought he had ADHD.
He was always SO active, but almost in a unpredictable way. New situations really threw him for a loop, he jumped constantly, gagged easily, had to touch stuff (even if told no) and never slept.
We were told he was sensory seeking.
They suggested at home we wrap him up tight in a blanket or really big beach towel for 5-15 minutes.
It all had something to do with deep pressure and it really calmed him.
At school he was given a rubber ball to squeeze and a "bouncy" seat (looked like a rubber frisbee with nubby things on it) on his chair.
The school released him from OT at the end of Kindergarten, and our outside OT/PT also released us after 2 or 3 sessions.
Insurance paid 100% so I was suprised.
BTW school OT consisted of 30 min. a week of in- classroom therapy/activities that involved the whole class.
During all of this time we were given handouts full of info and "excercises" to do at home.
He enjoyed being "wrapped" and thought it was hilarious. Sometimes I would wrap him tightly in a big beach towel after his bath (wrapped him mummy style with arms down to his sides for about 10 minutes). I would sit or lie down next to him on the floor and we would talk, or even watch TV together while he was like that.
It really calmed him down and was helpful at bedtime.
It was one of the best things suggested to us.
They had a weighted vest that worked the same way and at OT/PT he would wear it while he played games and they also had this sling/net type swing that they put him in and he turned into a wet noodle. He would walk out a different kid.
It is hard to understand how all of this works sometimes, but it is very interesting.
Don't know if this is truly helpful to anyone, but wanted to mention the "deep pressure" issue and what helped us.
Can't explain why the sensory issues ceased, or why his activity level decreased dramatically.
My friends and parents/family, etc. always said he would "grow" out of it.
I don't necesscarily believe that, but just thankful that he is doing well.
He is currently headed to 3rd grade in the Fall and reads on a middle school level (always has been highly intelligent.) He has also just been picked for our County All-Star Baseball (8u machine pitch) team.
Not bragging, but telling you all because there were times when he was younger that I didn't know in what direction he was headed and I know that sounds terrible, but his behavior was so unpredictable and quite often very upsetting to me. I am really proud of him and of course love him very much.
Before our diagnosis I thought his behavior was my fault (not doing something right, spoiling him, etc.)
It all seemed to really "peak" when he was about age 3.
Again, not sure if any of that helped, but was our experience.

[dylav]

Will order those books ASAP...also will try the blanket trick....I know what you mean that you worry what direction he will go in...I am kind of at that point right now...I am going to do my best to get him to go move ahead and be the best he can be. I am so happy to hear that your son has succeeded and is doing well. It really is a wonderful story to read.

[dylav]

Wish us luck --- we are getting an OT eval today!!

CaringBridge. Free Websites That Support And Connect Loved Ones During Critical Illness.

[Lauren57]

Good luck on the eval today. We used to do the deep pressure (wrapping in a blanket). My son called it the burrito game...he may have gotten that from the OT. Mom to Eli, OT for sensory integration disorder wasn't covered by my insurance either, but with a letter of medical necessity I was able to get some parts covered. Lauren

[krafmatic]

Well, count me in. Gabe had his SI eval yesterday. That eval was almost pure torture for the two of us.

Good news: he is generally doing great developmentally. The sole exception is his lack of verbalization due to some serious lack of muscle development with his mouth and tounge.
Bad news: Practically off the chart with SI issues. Our OT - who has many, many years of experience, particularly adopted kids - said that the only time she has seen similar test results have been with Autistic kids (which he is definitely not) and severely developmentally delayed kids. He has visual, tactile, proprioceptive dysfunction and he lacks planning skills (I can't remember the official term) for managing his environment to make it less hostile to him...example: He totally freaked when a blank piece of apaper was held ~6 inches infront of his face and he did NOTHING. Didn't even attempt to push it away...just started to whimper and cry.

I'm still processing all she said. I look forward to reading her written eval (information overload yesterday, I know I missed much of what she said). It appears that we will be spending a lot of time on the "shaking table" as that seems to calm him down.

His twin brother's eval is in a couple weeks...it should be such fun

Oh, and his general info:

Adopted from Guatemala
Home at 12 months (a very challenging 12 months for the little guy)
Home for 6 months
Signs: Honestly, I was blown out of the water by his dx. I thought we'd walk out of the eval with minor issues/borderline SI at most.
He's had a LOT of issues since coming home. Attachment has been very difficult and I think many of the SI symptoms were/are mixed in with the attachment issues.
treatment: start OT next week.

[rjvpmn]

Hi, My bio son ( born premie) had a ton of sensory issues.. hates clothes and is 12 and still hates most.. its been a long road. Very sensitive in all ways. Has some social issues and they have tested him for Aspergers but no real final diagnosis. Its been a puzzle. A good bland diet (we did Feingold) low sugar and good sleep helped. He also loves deep pressure.. very deep.. like both my husband and I laying or sitting on him. Now we have our 3rd child adopted at 8 mo and very delayed. She was diagnosed with Mild CP but I do see sensory issues in her too. Not as bad but textures with food at times ( seems to come and go) hates grass on feet but will do it if she has to. I dont have any great answers but therapy , love and just keep helping them learn to deal with it all. Now that my son is older he tells me how he felt.. like he was going to puke if he did certain things etc. He is a good kid but was very mean to our animals when young like squeezing them etc. It was very hard. I do understand how hard it is for the parent and family was the worst with understanding it all. They still dont at times.
Behavior is a symptom and I always tried to remember that.
Becky

[mommytoEli]

welcome to our 2 new members. it is such a frustrating road! rjv...i hear you on the deep pressure thing. mindybeth said i should look into a weighted vest, so i asked eli's doctor and she said no way. but then we went to the airport and eli had to carry his own backpack bc i ran out of arms....it was SOOOO heavy i felt bad for him and he yelled NO at me and insisted on carrying it himself....and while he did, he was SOOO calm. it was very odd.

eli just received his first early intervention screening. he passed all sections except motor. his developmental screening is tuesday, but they say he'll need to show he is 40% delayed in this area....i just don't see that happening. BUT the funniest part of the screening was the lady kept getting eli to stack blocks and later to walk on a straight line she taped to my floor. he wouldn't do either....instead he took the blocks and lined them up along the line......over and over again for the rest of the screening. i wanted to laugh, and cry. she put me through to the developmental portion jut in case, but agreed he probably won't qualify. ugh. i know some people would think that it was good news....but him not qualify doesn't make him automatically stop falling all the time because he toe walks, you know?

[rjvpmn]

I can relate. I used to think it was odd that my son was so much better after a haircut. I used the clipper on him and I think the vibration and the tactile stimulation helped. It took me a long time to put it together. I also know my son has a yeast overgrowth issue and it seems you find that with kids with autism and or allergies. Sugar is bad and he craves it. Also we found that sleep was huge and routine. I became obsessed at times but it was so hard not to. I dont think I would listen to a conventional Dr all the time.. dont think you are crazy as a mom I would trust my gut and watch the behavior.... and dont forget to be just Mom and love them.. sometimes I think i let it consume me as I was so wanting to help him.

[Dawnb93]

Well, Madelyn and I are still here and still waiting for an evaluation. With every post I read, I recognize more and more behaviors that match things that she does. Toe walking, eating issues, thrill seeking behaviors, etc. She's recently started pulling her hair and banging her head on her car seat or high chair. She throws herself down on the floor for no apparent reason. She's constantly mouthing things (everything but food, that is!). She will eat pretty much anything as long as it's smashed up. If there's a chunk in it, it gets spit out. She also doesn't like anything hard like Cheerios, cookies, crackers, etc. But she'll put a rock in her mouth and suck on it - go figure! She's delayed in speech, but otherwise seems to be on target. I can't wait to get her evaluated and get her started in OT. It could be a while, though as everything is slower down here now even 3 years after Katrina (we're in southeast Louisiana). I love her so much and I just want her to get the help she needs.

Dawn