[mommytoEli]

add to all of eli's sensory problems- biting. and he has always eaten non food items--but really it was more like he mouthed non food items, because everything goes in his mouth, but he wasn't swallowing legos or anything. now he actually consumes the item- stamps, paper, whatever, doesn't matter, and now his new favorite non-food item- people. all of a sudden i have a biter. it is non-provoked biting that seems to come from nowhere, so i'm going to have to guess it is sensory related since his oral responses are so high this week.

i don't know what to do.

he didn't qualify for services. i'm going to call the doctor AGAIN, but i just feel stupid since he doesn't ever qualify for anything.
me: my kid bites.
doctor: duh, kids bite.
but i know what he is doing is just not normal. he's this little boy freaking out inside, he must feel completely out of control, and i don't know how to help. he has a compression vest, a brush, oral aides. we chart his potty training, we let him sleep in our closet (he likes it there). i'm out of ideas. i seriously feel like i'm about to fail him.

i'm really hoping there is a sensory mommy or daddy out there who will have another good idea for me for something i have not tried yet. i did almost order him a weighted blanket for naps once, and i got sidetracked and forgot about it until this week when things went so very bad. does anybody here have their kiddo use one, and does it seem to make a difference?

THANK YOU!

[avoel]

Have you tried Chewelry? If he is old enough it might keep his mouth busy enough to keep others safe!

Chewelry - Chewable Jewelry

My daughter wears hers around her waist (doesn't like it around her neck!) but it still works---I take it off when she is outside of course because I don't want it to get hung up on anything, but for schoolwork and watching tv it keeps her from chewing on her lips, her fingers and her clothes!

And I am sure you are already encouraging lots of crunchy and chewy foods...

And just something to consider but whenever mine go way off the deep end with sensory overload...is he getting sick??? Growth spurt time??? Birthday or half birthday??? Sometimes those times just have to be endured but they truly are hard for child AND Mom. February is definitely our time and I dread it every year (half birthday...the worst!)

With regard to the weighted blanket...I tried one in desperation when I was trying to get my DD to transition to the bed from the crib/cribtent and things were not going well. It didn't work for us but the main issue was that my DD other sensory issue is that she hates to be hot so the blanket was creating one problem while it was supposed to be solving another. I was going to offer to send you ours but we moved recently and now I can't even find it!!!!!

I will say that I got mine from DreamCatcher and it was amazingly well made, washed well and she had tons of kid friendly fabrics to choose from.

*Quality Weighted Blanket, Weighted Blankets,Weighted Products, Deep Pressure Touch Stimulation

Above all sending you (((hugs)))

[Mindybeth6]

I Just have no advice. It's so frustrating that SID is not a stand alone disorder. Our kids are suffering too and deserve services but can't get them becaause they are not on the Autism spectrum and don't have ADHD or other noted issues. It is so unfair. You really need to find a pedi that RECOGNIZES SID as an issue, because some pedi's do NOT. Keep that in mind. And really while me Pedi recognizes it, he has no suggestions. It's really a OT that helps with Sensory and some are better than other's. Tuesday is Mikayla's transition planning meeting with our school district. We shall see if they phase her in or not. Hang in there....it's so tough and a lot of it is us parents reading and finding ways to help our kids on our own:-(

[mommytoEli]

thanks for the advice and support

has anyone had any luck with a gluten free/ casein free diet? we are already casein free....but i wonder if cutting out the gluten would make a difference?

[Ms.Judi]

I don't have any answers for you but know that I am praying for you and ELi. HUGS!!!

[mommytoEli]

Originally Posted by avoel

Have you tried Chewelry? If he is old enough it might keep his mouth busy enough to keep others safe!

Chewelry - Chewable Jewelry

My daughter wears hers around her waist (doesn't like it around her neck!) but it still works---I take it off when she is outside of course because I don't want it to get hung up on anything, but for schoolwork and watching tv it keeps her from chewing on her lips, her fingers and her clothes!

And I am sure you are already encouraging lots of crunchy and chewy foods...

And just something to consider but whenever mine go way off the deep end with sensory overload...is he getting sick??? Growth spurt time??? Birthday or half birthday??? Sometimes those times just have to be endured but they truly are hard for child AND Mom. February is definitely our time and I dread it every year (half birthday...the worst!)

With regard to the weighted blanket...I tried one in desperation when I was trying to get my DD to transition to the bed from the crib/cribtent and things were not going well. It didn't work for us but the main issue was that my DD other sensory issue is that she hates to be hot so the blanket was creating one problem while it was supposed to be solving another. I was going to offer to send you ours but we moved recently and now I can't even find it!!!!!

I will say that I got mine from DreamCatcher and it was amazingly well made, washed well and she had tons of kid friendly fabrics to choose from.

*Quality Weighted Blanket, Weighted Blankets,Weighted Products, Deep Pressure Touch Stimulation

Above all sending you (((hugs)))

we don't have chewlery, but he has vibrating chew toys from his ot. he loves them. i can't think of anything that is different- he is not growing, now sick, but i definitely see that he is, for some reason, in sensory overload. i will look at the weighted blanket again. thanks

[Mindybeth6]

Brook...did I ever send you the link for the home made weighted blankets. I have people that use them and love them. They are supposed to be more "cozy" and kid friendly. Hang in there...sometimes it's just so tough. Mikayla has times like this too and she eats all kinds of things too. :-( And I am not talking FOOD.

[mommytoEli]

Originally Posted by Mindybeth6

I Just have no advice. It's so frustrating that SID is not a stand alone disorder. Our kids are suffering too and deserve services but can't get them becaause they are not on the Autism spectrum and don't have ADHD or other noted issues. It is so unfair. You really need to find a pedi that RECOGNIZES SID as an issue, because some pedi's do NOT. Keep that in mind. And really while me Pedi recognizes it, he has no suggestions. It's really a OT that helps with Sensory and some are better than other's. Tuesday is Mikayla's transition planning meeting with our school district. We shall see if they phase her in or not. Hang in there....it's so tough and a lot of it is us parents reading and finding ways to help our kids on our own:-(

ot is not an option for eli....there just isn't a peds ot around that takes our insurance. i called on one and inquired about paying cash, i about fell out of my chair!! i am so tired of watching him suffer and just feeling like i don't know what to do. even when i feel like i am doing all that i know how, it is just so obviously not enough when he is freaking out.

[mommytoEli]

Originally Posted by Mindybeth6

Brook...did I ever send you the link for the home made weighted blankets. I have people that use them and love them. They are supposed to be more "cozy" and kid friendly. Hang in there...sometimes it's just so tough. Mikayla has times like this too and she eats all kinds of things too. :-( And I am not talking FOOD.

yes you did. i emailed them, and it took them WEEKS to get back to me, and then i kind of got unmotivated, and then forgot about it.....but i will go back and find that email and try again. he isn't sleeping well at all, which can't be helping any. i'm sad mikayla eats non food, too. it makes me sad...i wish he'd just ask for a snack. $8.40 worth of stamps is alot more expensive than and a lot less nutritious than a peanut butter sandwich. lol!

[miam]

I found this web page. I hope it can help.

Sensory Problems Affecting Behavior - Fragile X

[angelkisses0102]

OK if you cannot afford ongoing OT...go get him evaluated (pay out of pocket) by a sensory familiar OT and maybe one or two sessions and then do it in your own. While DS no longer goes to OT (too expensive but he went for twice weekly therapy last year)...our home is like the sensory room at OT. We have a ball pit in the formal living room, a mini tramp in our bedroom, a crawl tube in his room (used to have a Kangaroo Climber there), he is in the pool in the warmer months and in the cooler months he is often found in our large master bath tub for an hour or more. We wheel barrel walk, we jump on the bed, we spin him, have him jump on the tile floors, he has chewelery, and he goes to gymnastics weekly...to name a few. Your son NEEDS to get the proper sensory input to begin to heal/retrain his brain...SID does not get better on it's own...and the behaviors become worse, typically, once the child has to be in a structured setting like school. You can research a sensory diet and trail and error it...which we did for a while...but the sensory OT keyed in on DS's issues within the first couple times of seeing him.

Also, have you looked into Pica Disorder...my guy has major oral issues but never consumed non-food items...thank goodness for small favors. In fact we still go to feeding therapy ($58 a session) and he has twice weekly speech through the school district...both help with the oral issues. But maybe this is something other than the SID?!

Once your child is 3 he may qualify for 'special needs' intervention/IEP based on 'other health impairment', behavioral issues or even emotional issues (who cares about what it is called as long as he gets help)...if his SID impacts his ability to learn. DS will be labeled 'other health impaired' for undx'ed and unmedicated ADHD-like behaviors (aka his sensory behaviors) starting once he turns six this summer. Whatever, as long as it keeps him in the program he is in at school!

Good luck...

ETA...We tried to go GFCF but with DS's feeding issues...it didn't work out. You may want to join the adoptbiomed yahoo group...very informative.

[Lauren57]

One thing that the OT suggested that helped Michael a lot with biting things was drinking thick liquids thru a straw. I would make him smoothies, which I made progressively thicker, and give them to him for breakfast and then a couple times during the day. Gum also helped (but he was older)...sugarless gum worked very well with the oral stuff. Lauren, mom to Michael, now 6

[NJRach]

We found that gum helped my son, and also he loves to chow down on candy canes. He seems to like the crunching sensation. But we just give him one a day as a reward, else he'd eat the whole box.

Also, when he is in a pesky, sensory seeking mood, we take him outside for some action - he rides his toy roller coaster (which we placed at the top of a hill for more thrills), or we'll go on a long walk to tire him out. Sometimes we'll swing him in a blanket, or chase him around the house and let him get all crazy.

Then he seems like he's had enough action and settles down.

Rachael

[dance_muffin]

Hugs to you and Eli . Can you join a SID support group in your area? It a great way to exchange ideas and get help on navigating the sytem for services.

Also, another thought would be your Senator. Set up a meeting to discuss ways he/she can help you get services. They are able to move mountains; many people don't think to call upon them for help.

Also, the guidence counselor in the elementary school is also a good source. Lastly, don't take no for an answer; keep asking, calling and writing for help. My very dear friend has a dd who attends a specialized school for her learning disabilities. The tuition is very high and as a single parent my friend wasn't able to afford it. Unfortunately, the public schools were not equipped to teach her dd. She had to sue the NYC public school system. Her tuition is now paid for by them. Her dd is doing exceptionally well but it was a big fight to get the tuition covered.

[TerriBB]

You are not failing him!!!

I'll have to go through the books that I bought per the request of our IA Ped - I think I may have posted them last fall. We're in St. Louis and there is a doc who is an IA parent - she had an OT getting her PhD with an emphasis on IA kids! I believe that she was from Creighton. We got to visit this past fall and she sent a list of books and suggestions. I was afraid that Flora was going to get kicked out of preschool for biting, pushing, kicking and not responding verbally. Anyway...

The Out of Sync Child and The Out of Sync Child Has Fun (I think was the title.) It was written for sensory issues and there were a ton of good suggestions. You may want to get it from the library before you buy it. Both books were written in a very cheerful mode and explain things so well! Another PT friend suggested "Brain Gym"...I've not gotten that book yet.

One suggestion that I'm still debating is filling a duveax cover with smaller pieces of sponge and allowing the child to use it like a ball pit. To run across the room and jump into it. We have the small trampoline from Target, a blow up tire thing that I can roll the kids down the hill in the yard and a tube to climb through.

The straw/smoothie suggestion was something that was suggested too. Another option was to take pieces of tissue paper and have the child crawl on the ground and blow the tissue with a straw across the room - make it a game. She LOVES drinking from a straw, so we own many cups with them...but she hates the straws that come with the small boxes of milk - she can't chew them!

Flora CRAVES those chewy fruit snacks (dentists hate them)...I buy the HUGE box at Costco once a month. She's been chewing gum since she was 18 months and she doesn't swallow it. She was a terrible lip/hand chewer. She doesn't to it as much now, but with the cold weather, her hands are covered with little sores...and DH let her put santitizer on them the other day!!! auuugghhh...boy did she cry!

One of her quirky things is that she brings food to school each day, store it in her coat closet and brings it home. She was malnourished...she only gained 8lbs her first year...they say once a child is hungry, that feeling doesn't go away. I'm sure the nuns at her school think we're "giving in" to her, but if she has that slice of cheese in that cabinet, her behavior is much better!

I bought a lot of "action" toys through Basic Toys, it's a division of Scholastic Books.