we already use several sensory techniques for calming...bear-hugs, joint compression and rotation, deep massage, that sort of thing.

SIT seems to be a lot of...fun and games, lol. i'm hoping for a really good OT who is highly trained...my mom is a board certified behavior analyst, so she helps out with her knowledge quite a bit.

yep my son gets that too plus a weighted vest some times, his fingers are very senseative so they try putty and things. He also uses a bag chair and a big ball to bounce on

at first he acted like it really hurt him to get the compressions and massages and at times he cried but now he actually wants it.

My son's school provides his therapists, OT, and speech both are very good. it's good you have someone that has knowledge that can help you.

she asks for me to calm her down, sometimes...which is an improvement.

sometimes i have to pin her and do deep back massage and force deep breathing, or she'll REALLY lose it. one minute later, she's much better...but i hate forcing ANYTHING.

she stands on her head a lot, too, lol.

when they can ask for it is a big step.

I hated the pinning also I have been able to talk him thru now and rub his back leg or where he puts my hand and it's usually his back
when trying to teach him deep breathing actually made him hyperventalate once cause his was peaked and just rapid breathing not fun

mine flaps alot when he gets excited about something

no flapping, just rocking...and screeching. she's also deaf (85 decibel hearing loss) so she's even louder.

can't tune out a freaking thing. small touches are very painful to her...but over-compensating with deep touch seems to shut that down. she HATES joint compressions, but is grateful for them when finished, lol.

does veeeery well with deep-breathing. i dictate the pace and progressively slow them down...and quiet ensues.

for a few seconds, anyway.

I have 50% hearing loss myself so if he's loud well.....what can I say it don't annoy me ask much hahaha sorry

my son loves his fan, just a regular box fan running on high all the time seems to help block out noises, hates anything loud like thunder or large trucks rumbling by (wish i had a sound proof house)

if he scratched or hurt himself he would try to lick it ( I think it comes from kiss the boo boo) if his tongue don't reach he would lick his finger and rub it on the sore area he's gotten better at not doing that and just saying ouch

So today is my roommates twins bday...........they sure have come a long way. When my family and I moved in, the kids were testing me and my kids were in chaos. THankfully, with consistency and the same rules for all the kids, mornings are a snap. Sometimes I feel like a broken record saying the same things over and over.
One of our kids are on Abilify, and food is a battle until late in the evening. We have a time where no one is allowed in the kitchen. THat works sometimes. Any ideas on how to slow it down would be a help.........

So, is everyone making it through the month?

We are getting through. The sun is down and Chanukah is officially over. D's birthday is Friday!

Decided the latest med (3rd one) is not working and D is backsliding. The meds have had plenty of time to get in his system. I want to go back to the original one that his Dad insists he was having night terrors on. However, he was not having the terrors at my house. Back to the Neurologist this week. Found a child psychiatrist that we start up with next month.

On the good news front. Had the latest IEP meeting. They are going to be working closer with him and have some good plans in place. Everyone keep your fingers crossed?

Hugs to all! M

OT eval was interesting...diagnosis of sensory integration disorder. start sensory integration therapy on thursday, with pool and sensory diet.

How has everyone been?

Hi,
My daughter and last child has multi-challenges. She was damaged more by a botched brain surgery to save her life. She's 16 and I love her dearly. She is pretty much a doll baby has extremely fair skin, beautiful red curly hair (gotta love that mailman..lol, a recessent gene) doesn't walk or talk and has seizures. Despite every test there is still have not come to a correct diagnosis. The closest it seems is Angelman's syndrome because she has the gene but testing is upcoming for a disruption to the gene. I'm worried half sick she has to have major surgery in 3 weeks. There is a reason they are caled special needs because we love them in such a special way. I didn't read all the posts, but those I did touched me.

P.S. LuLu My daughter had a very hard time being touched and for 2 years we did a patterning program that helped that to the point she loves to be touched and cradled. If you are interested I can tell you what helped.

i absolutely am interested.

thank you.

Hey LuLu,
The entire patterning program took all day, but the tactile approach was done 6 times a day and went pretty quickly. Her most sensitive areas were hand and feet so more concentration on those. First--- brushing with a vegetable brush---fairly lighty til she could tolerate. She liked the bright one shaped and colored like a carrot. Second--tapping with finger tips
Third-light open handed tapping
Fourth--a body massager or body vibrator. Avoiding her scalp.
Fifth-cold followed by comfortably hot wet bathing or sponging type motion of the washcloth,
Sixth- A blow dryer set at a comfortable level, warm but not too hot.
Lastly- Game where I rolled her up in a blanket like a hot dog and then massaged her. I'd always try to make it fun and she got where she liked it, as I did. Making it fun didn't make it seem like a chore. The improvement shows pretty quickly. She would cry before that when I'd touch her. It was horrible to know I was afflicting pain. Sorry this font is all over. I hope it works for your child. It was a godsend to us. :)

Oh, I forgot as she overcame the sensitivity I bought different types of materials..velvet, leather, felt, etc. and had her touch those. Filled a bathub with rice or the playground balls and lots of water play.

we are to receive her "sensory diet" on thursday...and a "brushing protocol".

she is to spend time each week in the resistance pool and then the gym.

hopefully, it'll make a difference...right now i'm doing joint compressions and deep touch. both make a difference, but i need her to learn to calm herself, to self-regulate.

I homeschooled both of my girls until last year when their Dad left and I had to go back to work. It actually worked out real well for us, my 13 year old, made student of the week within the first 6 weeks of school. I used a curriculum I ordered of the internet for both girls, it came with a teacherguide, answersheets, and a lessonplan. I miss homeschooling them, but for right now I don't have a choice...

I do homeschool her, but it's been very hard. It's due to her vast health problems. Your area may have better options; such as a one on one teacher per student. I wish you luck with that.

My daughter has discipline problems, but gentle scolding sometimes work. I remember reading about a woman who by choice was squeezed in an animal machine. I'm assuming it may have been the compressing calmed her down. I hate that feeling of being trapped. Maybe the coddling in a blanket. Singing to my child, sometimes has a calming effect, but she always likes a roating light machine. If she's inconsolable that often works. It's a combination of the noise and the lights. On the inconsolable days it's sometimes a day for a short cry. Guess we all have those days.

That's my pet peeve about grouping all special needs into one group, as far as the school system goes. They, like all of us are so individual. I've postponed her surgery. We are calling Shriners, Monday. Hope you all are having a great day!

Please let us know how everything goes! Welcome & we are here to help!

Thank you. Waiting to see if she meets the criteria to be seen at Shriner's. I'm hoping and praying. I'm normally fairly private about my child. I'm really glad I found this group!

Wishing each of you a great day!,
Shaden-(Shari)

Well, the appointment at Shriner's was nerve racking, to say in the least. Now my daughter needs a feeding tube, put in prior to the surgery. She eats more than I do most every day, but metabolizes food very quickly. She'll still eat by mouth but this will allow extra calories. I plan to go to G.N.C. this week to get protein powder to hopefully bulk her up quickly, as well as start working with a nutrition specialist. It should only be in 8 weeks with the tube, but I wasn't expecting that. The surgeons concern is that she'll feel the rods in her spine. Of course they go over all the bad things that can happen during the surgery and who knows how long it wil take to get the tube placed and it is a very serious surgery. It is progressing fast, while we wait and it's now at 62 degrees. The longer we wait the less correction she'll get. I cried half the way home. Then cried more when I got home, then this afternoon.

I will comment that the Ronald McDonald house, in New Jersey is beautiful and the people so nice. We've had to stay in several Ronald McDonald houses and this was far superior to the others. It was nice to see different stars that had contributed...so nice! Some that play such tough chaaracters have big hearts!

hello ladies...its been a while since i checked in, but glad to still see some familiar faces....I can so identify with what so many of you say.....and i also agree that these children of ours are special to us in many untold ways....sometimes i do get very, very frustrated, but their funny ways, charm, and unique way of seeing the world often makes me realize just how special to me they are...and who really gives a hoot about the rest of the world anyway when you have the most incredible gifts right there in your daily life?
Kudos to those who are doing what we do everyday, I think every once in a while it5s good to thank ourselves too, becuase our children are our future and the work and love and structure we provide now is what will help them be the best they can be...and i have high hopes for mine!!
Hugs to anyone who wants or needs one (Hugs are everywhere in my little family!!)
Amanda