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Old 08-17-2006, 05:48 AM   #1
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Other Sensory Integration mom's here?

Corey just started Occupational Therapy this week, after waiting forever for the evaluation. Just wondering if there are other moms here with SID kiddos.

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Old 08-17-2006, 06:11 AM   #2
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Re: Other Sensory Integration mom's here?

Yup. Abby has been "loosely diagnosed" with SID. I say loosely, because our fp told us that although she meets and/or exceeds all criteria, she cannot be actually diagnosed except by the OT in Boston who specializes in SID. Well, I kindathink that's a crock, but okay. We've been on the waiting listfor him for over a year and a half..when we got on the list they told us it would probably be a 3 to 4 year wait. Aftera LOT of research, I have found that there is no one else in the state that we can see, but there is someone in Hartford who we could see..howveer, our insurance prohibits us from going over state lines (even though it is MUCH closer) since there is someone in the state who is taking new patients, even though it's on a waiitng list basis. Very fustrating....
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Old 08-17-2006, 06:28 AM   #3
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Re: Other Sensory Integration mom's here?

Where in Boston (Mass General, Childrens)? I'm in NH..... Corey was diagnosed here in NH, by 2 different teams - one at our local hospital and then by Early Intervention. We originally saw a GI down at Mass General Hospital for Children who suspected that SID was a possibilty (although she wasn't that polite about it ) and were referred to their feeding specialists who were supposed to confirm the diagnosis. I am thankful that we found something closer to home.
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Old 08-17-2006, 06:50 AM   #4
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Re: Other Sensory Integration mom's here?

Hi Karen!!!

DS (19 months) was diagnosed last winter. He has OT once a week and a visit from the nutritionist once a week. His major problems are mouth sensitivity and he has a few other things that we are working on. Our Early Intervention program here is wonderful and the OT we have is totally awesome! I haven't had to pay a dime either, it's all covered here in RI by state and federal funding. I've seen a huge jump in his progress the past month and let me tell you, it's been a day to day struggle. Remember...baby steps...and some days it's one step forward and two steps backwards.

For those who are struggling with getting help, your state is required to provide early intervention and preschool special education for children with disabilities and special healthcare needs under The Individuals with Disabilities Education Act (IDEA). You should know your rights, and if you are not getting what your child needs then you need to be their voice! Go to your congressman or state senator if need be! Here is the law: http://thomas.loc.gov/cgi-bin/query/z?c108:h.1350.enr:. Although coverage varies from state to state there should be some assistance at least from the Federal government for treatment (not private treatment) through your state's system. RI is great because the state funds the program as well which makes all children in the state equal when it comes to getting the help they need....wonderful because there is no way DH and I would be able to foot the help that our child needs and has been getting. I'm so grateful!
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Old 08-17-2006, 08:11 AM   #5
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Re: Other Sensory Integration mom's here?

I have two with SID. My 5yr old is hypersensitive. Textures, loud noises, sudden movements, etc really set him off. He's getting better as he gets older though.

My 2yr old is hyposensitive. We joke that if we swung him over our heads by is toes we may finally calm him He knows no fear, doesn't feel pain very well and does all sorts of naughty things (read: destroying furniture, breaking down doors, pushing the kitchen table around, etc) to get the stimulation his brain needs. He's on a sensory diet. Every couple of hours I have to try to reach that part of his brain that "feels" in order to keep him from melting. Doesn't always work, but we try.
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Old 08-17-2006, 08:26 AM   #6
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Re: Other Sensory Integration mom's here?

yep. Read The Out-of-Sync Child and the O-O-S child has fun. Good luck.
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Old 08-17-2006, 09:03 AM   #7
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Re: Other Sensory Integration mom's here?

I have a teen who we suspect suffers from SID also a mild OCD.
As a baby 18yrs ago we figured something wasn't quite right, but back then no one really got it. His is a touch issue, even as a newborn he never melted to you, he was always holding himself away. By the time he was 4mths he knew how to push peole away who got too close. How he managed to breastfeed till two is funny.
Sheets had to be smooth, seams in clothes, tags, labels seams in socks really bothered him, food has to be the "right texture,and smell" Even now socks are a problem, he picks at the seams to smooth them out and makes holes.
He wore girl socks till 8th grade as the seams are smaller and smoother and thank you hanes for tagless tees. He is a tidy clean kid. Washing hands is so far under control, I hoep it stays that way when he leaves for college next week.
Oh his Dad has many of the same touch issues, doesn't like hugs, rubs, touch in general (he says it hurts his skin),and his OCD is a counting thing.
So far Ds #2 has no problems with any of this.
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Old 08-17-2006, 09:04 AM   #8
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Re: Other Sensory Integration mom's here?

Unofficially my youngest is. We've gone through every service available here and get opposite opinions on everything. Some things she's learned to adjust herself to like loud noises, high pitched singing and she's learning to deal with crowds. Then she comes home and unloads though. She was with my mom for 8 days, I picked them up on Sat and she's almost fully adjusted back now. She has this weird sniffing me thing she does, that increases when she is overstimulated. She pulls her ear and sucks her fingers more. She had 2months off from school and she had slowed down on all of them, pretty much cut out pulling her ear. A year ago she had cut most of them down and wasn't really pulling her ear or sniffing me anymore then started playschool. They had an extra TA in the class for her and that helped her transition into the school but there was a very noticeable increase in her unloading and she was pulling her ear again and sniffing me. There were weeks her ear was bright red and sore. I know everything is going to increase again in a month when she goes back. She'll be going 2 days a week this time(for 2 hours). Next year though, when she hits K I'm expecting a complete breakdown.

The worst was in June 05. We were at my oldest dd's school for family fun day. It was raining so they did the activities inside. We were in 1 class that they were doing a balloon breaking contest. Everyone had a balloon tied to their feet then they ran around trying to break them. There were 2 grades in there and it was very loud. She had her ears covered and was fine until they started breaking the balloons, I had to take her out she was screaming so bad and we could not go back near the kids until they were all done. It took us months to get to where she would hold a balloon, but if it made that balloon noise she'd freak out. Generally we do not have balloons anywhere near her.

Later at the end of the day everyone was in the gym for the tug-of-war. There was around 200 people in there so it was loud. I couldn't get out because there were so many people in there and she had her ears covered but even that wasn't helping. She laid on the floor on my feet and looked so defeated, sad, almost even broken with her fingers in her mouth and she shoved her shirt up her nose(another thing she does if she can't sniff).

This year at family fun day it was gorgeous out so they did everything outside. I was with my neighbor who hadn't really been around us much so she hadn't seen alot of her sid things. We were walking towards where my dd was and they were doing the balloon thing outside. We were 40feet away from them still but she saw what they were doing. She freaked out and started screaming. I had to take her away and to where there were people between the balloons and us before she'd stop screaming. My neighbor came up to me and said "she really is si isn't she".
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Old 08-18-2006, 03:28 AM   #9
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Re: Other Sensory Integration mom's here?

Linda-

Unfortunatly the one I have with SID is 7, so she's WAY to old for EI..although I'm not a big fan of the programs around here anyways, so I don't *think* I would have gone that route anyways. She was my fisrt, and my the time she aged out of EI, I was jsut starting to realize that not all children act like this lol I honestly thought that herbehavior from age 18 months on was just the terrible two's..looking back, I don't think she ever had a change in behavior, but she was my first..I just had no clue.

As for the specialist, he's at MA General....I'll see if I can locate the last "waiting list update" later...his name eludes me right now.

I actually don't even know if we will be taking weekly trips to Boston when our number is up. I have learned both how to cope with her and to help her cope with herself (which has gotten more difficult as she gets older, which I didn't expect), and generally things run fairly smoothly around here. The difficult part I am having right now is that because I know how she is, I have a different discipline style with her than I do for the others, and we went through a phase where she insisted I hated her I am not a yeller, we use warnings and redirection and LOTS of talking abuot actions and consequences. But with her, I have a much sterner voice, that for a long time she perceived as me yelling at her..which I was not, but my tone is more sharp and harsh as it takes a bit more to get her to snap out of it when she really gets going. For a long time that was really difficult for me, as I don't feel that I have to be a dictator to teach my children to be respectful and well-mannered, but we have adjuseted to spending all our time together, and when she has a good day, we will occasionally talk abuot how I talk to her differently when she is having trouble feeling good. Thankfully it's getting better....our communication that is. Her SI issuesseem to have no change at all..which I'm not sure if that's bad or good. I've read numerous places that a lot of kids tend to grow out of the majority of the issues, that they can achieve partial intergration fairly independantly and learn their own coping techniques for situations that get them riled, but she hasn't...but her list of triggers doesn't seem to be getting any longer either.

We also compromised last year because she rEALLY wanted to go to school..her joy over me giving her a year to go to public school was quickly tarnished, and come ast October she was ready to come back home. Mean mama that I am, I madeher stay the year, as I don't want her to feel like she can just do something and then change her mind. She was pissed!!!! And every day for 2 hours after school our house was insane, and she had a terrible time coping with it. It got to the point where I let her take a bunch of "personal days" m(my mother was not amussed with the term, but that's what they were) and once school finally ended, we had a rough 6 weeks with each other and she de-schooled...Now that we are happily back on the hs track, she is becoming a different person..which makes me happy, because the worst part of the whole SID thing is that I cannot stand to see how miserable she is when her issues are flared up....It just makes me so sad.
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Old 08-18-2006, 05:30 AM   #10
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Re: Other Sensory Integration mom's here?

Abby:

It's great to hear that you are finding ways to "adjust" and live with it. That was one of my problems at first....it seemed as though DS's SID was controlling our lives. The thing is to learn to live with it and not let it control everything else. Not an easy task!!!

I agree though.....DS was my 5th child and I knew by the time he was 12 months that something was not right. I wasn't sure what it was, and I talked to his pedi. If he was my first, I would have had no clue I'm sure until he was much older! He is very different than my others with his development and his issues I would have brushed off probably as just being a "difficult" child, "terrible twos", etc. I'm lucky that he was my 5th and I was able to see that something was not right so we could get him help early. Hopefully we can get him on the right track, or an easier one before he hits school age!

It's a new school year. I'd be persistant with her that she must attend every day and there will be no "personal days" this year. That could blow up on you.....I have a niece who has learning problems(she is 13) and her personal days became more and more frequent to the point where last year she was out of school more than she was in. Unfortunately...the school is not able to help you "force" them to go and she was in great danger of failing. Eventually they had to admit her into a special treatment program at the local hosptial which she had to attend daily. Uggghhh....not a good situation! Just remember, when school starts this year, it's a whole new year....don't let the SID become the control!

I definately have a different parenting style with DS also. I think you have to "go with the flow" a little more. And, although, I still tend to shy away from taking him out to public events, etc., for fear of a meltdown or some uncontrollable behaviour, I'm trying to expose him to as much as I can within what he can handle. I think the more the better, ya know? Exposure, exposure, exposure....That is my method. I think it really helps!!!

Good luck with getting into the program at Boston! I live in RI....are you in northern MA or southern? I'm on the Attleboro border, so probably not too far from you!
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