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GWTW Junkie 11-02-2007 07:54 AM

Parents of Sensory Processing Disorder kids
 
Hi, I'm Elisabeth and my 4-yr-old daughter was diagnosed with mild Sensory Processing Disorder (sometimes called Sensory Integration Disorder) about a year ago. She has no other conditions, so we are very blessed to have "only" this to deal with.

However, instead of becoming less pronounced as time goes on (like the therapist said it would) it has become more pronounced (or maybe I just recognize it more because I'm informed now). SO I am looking for a support group to join to help deal with the emotional aspects for me that have recently surfaced.

So little is known about this, I find myself explaining it ALL THE TIME--and there's no quick explanation, is there? I am torn between not wanting anyone to know and pity my child or me, and wanting them to know all about it so they can understand and help her. I am sad that this is the "new normal" and that our lives will never be the same way they would have been. I am frustrated that sometimes my husband doesn't seem to care (which I know is not true). I am angry that my in-laws don't seem to be interested in hearing about it or doing any research. I'm ticked at a friend for treating my DD like she is handicapped. I'm mad at myself for losing patience with her sometimes.

Would anyone like to start a group to discuss their stories, share tips and tricks, discuss treatment options, or just chat? Hope so!

goodlicorice 11-02-2007 11:42 AM

My 6 year old son has SPD. He was diagnosed when he was 2 1/2. I was really wanting a reason for his abnormal behaviors. He attended special ed. preschool for 2 years, then "tested out" of all special services for kindergarten. He's in first grade now and is on the honor roll, something I never could have predicted a few years back.

I know what you mean about a husband who doesn't seem to care. I feel like I researched the subject to death, reading all I could about it while DH didn't do anything. I still sometimes feel like he sees this as my responsibility as the mother, and expects me to give him a report of whatever I learn.

I was frustrated with a friend for a while too. When I'd complain about DS's inability to do things for himself, she'd tell me it was probably just because he was spoiled as the oldest and was just used to me doing everything for him.

I've tried to start a couple of threads on SPD. I've been invited to the Autism thread as well, but I don't quite fit there. I don't feel like I can complain when I know there are kids with much more difficult issues, you know?

I'd be happy to share with others about SPD here.

Natalie

momof2stampers 11-02-2007 02:28 PM

My DS is 7 and he has it too.

For our DS, it's the medical problems that crop up that us the most problems.

Recently he was coming down with a cold, and the doctor figured that because of the SPD, his immune system interpreted the virus wrong and treated it like an allergy - he got hives on his lungs:confused: Then he went on to say that because of the SPD, our DS misinterpretted the itchiness as pain. So, the symtpom that we saw was him clutching at his chest and complaining of terrible pain. The teachers thought he was having a heart attack.

Thanks for starting this. I've also tried to start it, and I've also been to the autism thread, but I was getting asked by some why I was there. I stopped.

What senses are affected by your kids? My DS has difficulty with 7 out of the 9 senses. The only ones that don't affect our DS are smell and sight. He is 2-3+ years behind in the others, but he has amazing coping skills so I bang my head against a wall trying to get help for him. I even had a pediatrician kick me out of his office because he felt I was trying to make my kid into a `super kid' by seeking therapies. He called me back the next day to apologize because he had finally read the reports and realized he had been wrong. :mad:

What are your stories?

momof2stampers 11-02-2007 02:30 PM

Quote:

Originally Posted by goodlicorice (Post 7612599)
My 6 year old son has SPD. He was diagnosed when he was 2 1/2. I was really wanting a reason for his abnormal behaviors. He attended special ed. preschool for 2 years, then "tested out" of all special services for kindergarten. He's in first grade now and is on the honor roll, something I never could have predicted a few years back.

I know what you mean about a husband who doesn't seem to care. I feel like I researched the subject to death, reading all I could about it while DH didn't do anything. I still sometimes feel like he sees this as my responsibility as the mother, and expects me to give him a report of whatever I learn.

I was frustrated with a friend for a while too. When I'd complain about DS's inability to do things for himself, she'd tell me it was probably just because he was spoiled as the oldest and was just used to me doing everything for him.

I've tried to start a couple of threads on SPD. I've been invited to the Autism thread as well, but I don't quite fit there. I don't feel like I can complain when I know there are kids with much more difficult issues, you know?

I'd be happy to share with others about SPD here.

Natalie

In case you don't know, many gifted children have SPD, so you may want to look into that, just in case.

My DS is profoundly gifted and with the SPD, he has a lot of social difficulties.

zapaz111 11-03-2007 05:22 AM

Quote:

Originally Posted by momof2stampers (Post 7613894)
In case you don't know, many gifted children have SPD, so you may want to look into that, just in case.

My DS is profoundly gifted and with the SPD, he has a lot of social difficulties.

My DS is also gifted and has SPD. Just recently we had a neuropsy. eval done and they said he has ADHD. Everyone who knows my son is surprised by this. We did the eval because we were looking at Asperger's. Anyways, my fear is that it is actually the SPD mimicing ADHD. I have read how this can happen and then throw giftedness on top and it all gets so confusing.

DS has been in OT for over a year now. He is a sensory seeker. He bounces a lot, walks on his toes, and has meltdowns when he is over stimulated. It is hard to deal with family. My DH had read nothing about it until we sat at the hospital for 2 days of the eval. Once he began to read, he began to see our son. But he has far less patience for our son. Sometimes I think they are too much alike.

It will be nice to have a place to talk here on SCS.

Thanks for starting this thread.

momof2stampers 11-03-2007 07:45 AM

Quote:

Originally Posted by zapaz111 (Post 7617457)
My DS is also gifted and has SPD. Just recently we had a neuropsy. eval done and they said he has ADHD. Everyone who knows my son is surprised by this. We did the eval because we were looking at Asperger's. Anyways, my fear is that it is actually the SPD mimicing ADHD. I have read how this can happen and then throw giftedness on top and it all gets so confusing.

DS has been in OT for over a year now. He is a sensory seeker. He bounces a lot, walks on his toes, and has meltdowns when he is over stimulated. It is hard to deal with family. My DH had read nothing about it until we sat at the hospital for 2 days of the eval. Once he began to read, he began to see our son. But he has far less patience for our son. Sometimes I think they are too much alike.

It will be nice to have a place to talk here on SCS.

Thanks for starting this thread.

My DS is being monitored for ADHD, but I think it's the SPD.

He did a year of OT, and then we moved across the country and he fell out of the system. That was 3 years ago and now he has aged out. We have had him in activities like gymnastics, rock climbing and swimming because all of them work many of the muscles, but consequently, he stays just barely within range where they won't justify therapies.:mad: If we pulled him out of everything, they would do it and pay for it, but because we spend a lot of money to prevent that from happening, he doesn't get help.

He did learn to skate finally and we are super proud!:mrgreen: We don't know if he will ever ride a bike though.:(

BTW, when we had him in the ER recently for his chest pains, the doctor called it Sensory Misinformation.

zapaz111 11-03-2007 04:59 PM

Quote:

Originally Posted by momof2stampers (Post 7613880)
My DS is 7 and he has it too.

For our DS, it's the medical problems that crop up that us the most problems.

Recently he was coming down with a cold, and the doctor figured that because of the SPD, his immune system interpreted the virus wrong and treated it like an allergy - he got hives on his lungs:confused: Then he went on to say that because of the SPD, our DS misinterpretted the itchiness as pain. So, the symtpom that we saw was him clutching at his chest and complaining of terrible pain. The teachers thought he was having a heart attack.

Thanks for starting this. I've also tried to start it, and I've also been to the autism thread, but I was getting asked by some why I was there. I stopped.

What senses are affected by your kids? My DS has difficulty with 7 out of the 9 senses. The only ones that don't affect our DS are smell and sight. He is 2-3+ years behind in the others, but he has amazing coping skills so I bang my head against a wall trying to get help for him. I even had a pediatrician kick me out of his office because he felt I was trying to make my kid into a `super kid' by seeking therapies. He called me back the next day to apologize because he had finally read the reports and realized he had been wrong. :mad:

What are your stories?

Your hives story also hits home. My DS just had a really bad outbreak of hives. It took 3 weeks of steroid treatment and one trip to the ER to get over them. And from what, we do not know. He is going in for allergy tests on Monday. He has had these mystery hives about 5 times now. He is 6. My doctor has said they can be an outlet for a virus. Can SPD really affect children's immune responses? The thought has never occurred to me before.

goodlicorice 11-04-2007 09:22 AM

My son was diagnosed with ADHD around age 3 by our developmental pediatrician, who we disliked so much we never returned to again. 3 seemed way too young to diagnose ADHD for me, and he even prescribed medication which we didn't feel good using. (Don't they now say you can't even diagnose ADHD until 6 or 7?!) Since then, he hasn't received any additional services or therapies. I've been very frustrated because this dev. ped. was supposed to be top notch and it took us 6 months to get in to see him. we had a few appts. with him that proved to be useless.

Fortunately, DS's situation now seems to be pretty mild. He's still pretty hyper, which I think is all related to sensory seeking, but it's manageable most of the time. He does well at his school because it's so structured. However, I would like to find another developmental pediatrician to work with. Our regular pediatrician was clueless when I was explaining sensory issues to him.

momof2stampers 11-04-2007 12:05 PM

Quote:

Originally Posted by zapaz111 (Post 7621272)
Your hives story also hits home. My DS just had a really bad outbreak of hives. It took 3 weeks of steroid treatment and one trip to the ER to get over them. And from what, we do not know. He is going in for allergy tests on Monday. He has had these mystery hives about 5 times now. He is 6. My doctor has said they can be an outlet for a virus. Can SPD really affect children's immune responses? The thought has never occurred to me before.


That actually sounds like something my DS had last year and it's called chronic hives. It starts with a virus and it has nothing to do with SPD or allergies. That might be what your doctor was meaning when he mentioned a virus. There is never an allergic explanation when this is the problem and it can go away in 6 weeks to never. My DS will probably never outgrow it completely - he still breaks out in full-body hives when he goes swimming or gets cold. He also swells when he is scratched. He will probably have those reactions for life. He still has other allergies that are life threatening, but these hives are different.

I am not trying to diminish what is happening to your DS. It is very scary, and we were even told by one doctor that our DS was dying because he was no longer responding to any medications to stop the hives. He was completely wrong.

If you want to google it, look up Chronic Urticaria. It could be an actual allergy for your DS, but from the little you said, it sounds like what my DS has.



The problem he had last week was different and I was shocked when the doctor explained his theory. I never would have imagined that SPD could affect an immune response, but I guess it depends on the individual's sensory difficulties. Every child is different, and this doctor felt that my DS's chest pains last week were related to a cold and SPD.

GWTW Junkie 11-05-2007 06:12 AM

Yay! I'm so glad there are other moms out there who want to chat about these goofy kids of ours! I knew I didn't fit in the autism group--like another poster said, I would feel horrible complaining about the little things I have to deal with compared to what those parents have to work with every single day.
I don't know if DD is gifted. She sings all the time, even her talking voice is very musical when she's playing. I haven't noticed any particular affinity for math. She does read words out of the blue, sometimes big ones, and has been doing that since age two. But she doesn't read consistently (just turned four yesterday, though).
So I don't know if she's gifted. I do know I was profoundly grateful when I read that there's nothing wrong with the intelligence level of SPD kids!!! It's just their processing and behaviors, not their intelligence.
DD is a sensory seeker. She likes to lay on the floor. She flaps her arms when she's excited or stressed. She extends her legs straight out like the tendons will pop any second. She walks on tip toe much of the time. She loves to crash into people, walls, whatever. She breaks pencils and crayons by coloring so hard, but she doesn't really like to color because her coordination is not good. She gets frustrated so easily.
We thought she was deaf for a long time because she wouldn't respond to loud noises behind her head, or to our voices, if anything else was going on (like TV or music). Now we know she just couldn't discriminate between our voices and the background noise. Yet she used to freak out if a fire truck when by. But I guess that's "normal"--a lack of sensory consistency. Some days are good, others very bad.

Has anyone tried chiropractic? God has blessed us with a pediatric chiropractor who has a son with SPD and she has taken on DD as a case study, for free!! I have not noticed a huge physical difference yet, but one day after she had three treatments three days in a row, she fell asleep at six p.m. and we couldn't wake her up for anything. When she woke up, she was extremely emotional and cranky. The chiro said she was probably doing a "total body reset." But the next day, her language skills went through the moon! She started talking in longer sentences and more sentences total. It was truly phenomenal. Has anyone else tried chiropractic yet?

GWTW Junkie 11-06-2007 06:49 AM

Does anyone have any hints for getting SPD kids to engage in Kindermusik? I actually dread going to the meetings because I am just exhausted afterwards. She won't sing for anything--although the minute we get in the car afterwards, she's singing away. She won't do the motions, not even ones she loves, like crawling, rolling, jumping, etc. She says she just wants to watch--and yet she won't stay put on my lap, either. I feel like I've been beat up by the end of the time.
I'm not quitting, because I have a chunk of money invested in it, but I'd sure love to just give up on this emotionally and physically exhausting activity.

momof2stampers 11-06-2007 07:27 AM

Quote:

Originally Posted by GWTW Junkie (Post 7639037)
Does anyone have any hints for getting SPD kids to engage in Kindermusik? I actually dread going to the meetings because I am just exhausted afterwards. She won't sing for anything--although the minute we get in the car afterwards, she's singing away. She won't do the motions, not even ones she loves, like crawling, rolling, jumping, etc. She says she just wants to watch--and yet she won't stay put on my lap, either. I feel like I've been beat up by the end of the time.
I'm not quitting, because I have a chunk of money invested in it, but I'd sure love to just give up on this emotionally and physically exhausting activity.


I would ask her if she enjoys it. If she enjoys it, does it matter how she chooses to enjoy it?

She may find the amount of activity and energy overwhelming and is taking it in, in her own way. Then once she leaves she is finally allowed to enjoy it `her way'. Does that make sense?

I have learned (and my DH is getting there) to back off from my expectations of DS, and let him be the kid he is meant to be and stop trying to get him to be the kid I want him to be. He is almost 7 1/2 now, and I've only finally gotten to this point in the last year.

If I were in your position, I would allow her to do it at her pace, but you take note of what they do. Then, at home, when she sings, get her to do the other stuff that goes with it that you saw in the class. That way, she'll get the benefit, on her terms, and you can relax about fighting with her and still be able to give her what she needs.

One more thing, my DS is very self-conscious and he has never, even once, participated in that type of event in front of others. When we went to moms and tots, he would listen while other kids and moms sang and danced. He listened and sang all the songs at home. At weddings when the other kids dance and fool around, he sits and reads. We saw Lois and Brahms in concert, and he sat and listened while kids danced all around us. He loves to do that stuff with us, in our home, but there is no way he would ever do it in public outside of his comfort zone.

GWTW Junkie 11-06-2007 02:11 PM

That sounds like good advice. Maybe next week I'll quit wrestling with her to participate and let her go wherever she wants (aside from interferring with the other kids and the teacher or messing with the equipment). Do my own experiment. It's so hard to know what is normal 4-yr-old rebellion and what is SPD. KWIM?

I'll have to run it by the teacher and maybe even tell the other parents what I am doing.... I have seen some of them looking at us like we're nuts when I am adapting some of the excercises, and it is SO hard not to care what they think. I know they must think my DD is so naughty that she won't sit still even for 30 seconds and prefers to roll around on the floor.

I did tell one of the other moms last week, trying to explain why we'd had such a bad session, but I didn't even get past the first sentence, "My daughter has sensory processing disorder..." and I could see her shut down. She didn't say a thing so I just left. It was hard.

This Kindermusik class, our first, has really been an eye-opener for me. It really brought home to me for the first time that DD is NOT ok and this is NOT getting better by itself. I'm sad. I'm in over my head.

goodlicorice 11-06-2007 02:57 PM

My son is not big into music at all. He's never really enjoyed singing or being sung to. When he was a newborn DH's grandfather who sings opera tried to sing him a song to calm him down. He told us all the grandkids loved it, but DS wailed and got more hysterical because of it. MIL also tried singing her own special little song that calmed all the little ones down, and it never worked.

When he was 3 or 4 I'd try to sing with him and he'd always tell me to stop it. I kinda felt bad! I was in a musicals and thought my singing was okay.

I've seen him sing a few times in church and school programs and it makes me happy, although he never seems to know the words. I think he usually tunes out during music lessons.

I don't think there is any way he ever would have sat through a Kindermusik class. :(

Good for you for trying, though. ;)

momof2stampers 11-06-2007 03:00 PM

Have you read the book The Out of Sync Child Has Fun?

There are a lot of good ideas in there for helping kids who crave sensory-seeking behaviours.

Sometimes, if you try some of these activities before going to an occasion where focus is required, they are able to focus better.

My DS cannot focus easily in school, so he is allowed to have a basket sensory toys on his desk to play with as he listens to the teacher. He also cannot sit properly in his chair, so he stands at his desk instead of sitting. The teacher also has a wobble seat at the back for him when he feels he needs it.

He has trouble at recess because of the number of kids, so our OT suggested he get `grounded' before going outside. She suggested he stack the chairs before going outside, do the bunny hop or crab walk to the hook to get his coat. He can also carry a ball outside, or hold someone's hand.

We are currently finishing our basement and we are making it into a sensory room.

We have rings, a disc swing, rocks for rock climbing, bean bags chairs, swinging enclosed chairs, rope ladder, net ladder, balance beams (2 x 4s;) )from one stud to another, etc. Here are some of the products if anyone is interested. None of it is expensive.

http://www.ikea.com/ca/en/catalog/products/40054072

http://www.ikea.com/ca/en/catalog/products/S19809351

http://www.ikea.com/ca/en/catalog/products/00041048

http://www.ikea.com/ca/en/catalog/products/10081656

http://www.ikea.com/ca/en/catalog/products/S09809115

http://www.specialneedstoys.com/usa/...Proprioception

I bought something like this at Toys R Us:

http://www.specialneedstoys.com/usa/...D=Independence

http://www.specialneedstoys.com/usa/...tID=Vestibular

A lot of these items can hang from the same set of eye bolts, and can all be stored in a nearby cupboard.

goodlicorice 11-06-2007 03:10 PM

Wow! I've seen some of those items at IKEA, but some are definitely new. I love the toys at IKEA - I think the creators really understand the importance of sensory input for kids.

I really wish we had a basement. I have the Out of Sync Child Has Fun and so many of the ideas would work better in a wide open space like that.

GWTW Junkie 11-07-2007 06:13 AM

We don't have a basement either... but that gives up one more reason to move, I say! We need a stamp room for my growing business AND we need a sensory room!!! LOL

I haven't read The OofS Child Has Fun... I waded through the OofS Child, but got tons more practical good from the Everything Parent's Guide to Sensory Processing Disorder. Way more readable. I'll have to look up the "has fun" book.

GWTW Junkie 11-07-2007 06:17 AM

Quote:

Originally Posted by goodlicorice (Post 7643817)
When he was 3 or 4 I'd try to sing with him and he'd always tell me to stop it. I kinda felt bad! I was in a musicals and thought my singing was okay.

My DD always tells my DH to be quiet when he sings, but she loves to hear me sing. Sometime she'll sing with me (songs from the Barbie movies). It is SO sweet, it breaks my heart! But DH is a little miffed that she always tells HIM to shut up. I tried explaining that I've read that some kids just can't stand certain frequencies and timbres of voices, but it hasn't helped him not feel a little rejected.

Thank you for encouraging me. I can't tell you how much it means to me. Obviously I'm a little down about this all. I didn't realize the SPD was so bad until my other child went to school and I started focusing entirely on DD.

GWTW Junkie 11-07-2007 06:19 AM

Ps--I have found a funny way to get DH a little more involved in researching and learning about SPD--I left an "easy-to-read-in-small-portions" book on SPD in the BATHROOM! LOL

He's mentioned things he has read twice now. I know it's a little gross, but I'm just thrilled he cares.

momof2stampers 11-07-2007 08:06 AM

Quote:

Originally Posted by GWTW Junkie (Post 7648048)
Ps--I have found a funny way to get DH a little more involved in researching and learning about SPD--I left an "easy-to-read-in-small-portions" book on SPD in the BATHROOM! LOL

He's mentioned things he has read twice now. I know it's a little gross, but I'm just thrilled he cares.


Too funny!:mrgreen:

I hear ya about DHs not doing the reading. My DH doesn't read anything. He has always taken his job and before that, his studies, so seriously, that he hasn't read a book or magazine for pleasure since he was 13 yo. He's VP of Engineering in a large company at 32 yo, so obviously it's worked for him, but it gets to me. He is so burnt out from reading that he asks me let him know the interesting points from anything that I read.



On the topic of a basement, a lot of the things we have in the basement can hang from the same set of eye bolts. At the moment we have a hanging, enclosed chair in his bedroom. He loves it! If we didn't have the basement, I could easily siwtch out the rope ladder, or something else for the hanging chair occcasionally. We could also put a set of eye bolts into the centre of the ceiling in the family room and when we have time to `play' we could hang something and push the furniture back. It's not ideal, but it would work (if you can get past screwing eye bolts into the ceiling of the family room;) ).

zapaz111 11-07-2007 01:27 PM

Quote:

Originally Posted by momof2stampers (Post 7626020)
That actually sounds like something my DS had last year and it's called chronic hives. It starts with a virus and it has nothing to do with SPD or allergies. That might be what your doctor was meaning when he mentioned a virus. There is never an allergic explanation when this is the problem and it can go away in 6 weeks to never. My DS will probably never outgrow it completely - he still breaks out in full-body hives when he goes swimming or gets cold. He also swells when he is scratched. He will probably have those reactions for life. He still has other allergies that are life threatening, but these hives are different.

I am not trying to diminish what is happening to your DS. It is very scary, and we were even told by one doctor that our DS was dying because he was no longer responding to any medications to stop the hives. He was completely wrong.

If you want to google it, look up Chronic Urticaria. It could be an actual allergy for your DS, but from the little you said, it sounds like what my DS has.



The problem he had last week was different and I was shocked when the doctor explained his theory. I never would have imagined that SPD could affect an immune response, but I guess it depends on the individual's sensory difficulties. Every child is different, and this doctor felt that my DS's chest pains last week were related to a cold and SPD.

Yes, that is what DS has, chronic hives. No allergies at all. And those allergy tests were not fun. But the doctor said there was no way to know for sure without the tests. The good part of the whole visit was that they said to bring him into their office if he gets hives again because they will try to treat them without using a steroid.

momof2stampers 11-07-2007 05:22 PM

Quote:

Originally Posted by zapaz111 (Post 7651849)
Yes, that is what DS has, chronic hives. No allergies at all. And those allergy tests were not fun. But the doctor said there was no way to know for sure without the tests. The good part of the whole visit was that they said to bring him into their office if he gets hives again because they will try to treat them without using a steroid.

I'm glad to hear he doesn't have any allergies!:) My DS was never given a steroid to treat his hives. They recognized that the hives were not going away, but we flipped between a bunch of different antihistamines, and eventually found one that worked fairly well - in an adult dosage.:rolleyes:

The hives bothered us more than him because he was fairly unaware of them because of his undersensitivity from SPD.

I know they are annoying, and every time they happen, you will worry that maybe this time it is an allergy, but you will get used to them and start to be able to predict them. We are there now and we know if he randomly starts itching for no reason, he is cold and we tell him to get a sweater, and we know he will get full-body hives when he swims.

Good luck! I hope he moves them quickly! 95% of people are completely done with them by 6 months!:D

momof2stampers 11-07-2007 05:28 PM

1 Attachment(s)
Out of curiousity, the kids you each have in your avatar, are they your kids with SPD?

My avatar is my DS with SPD. This is his face.:D I don't put my kids' faces in my avatars because the internet totally freaks me out.

goodlicorice 11-08-2007 11:38 AM

My current avatar is my 4 year old son Noah, but in my profile is a picture of my son with SPD, Zachary. The picture was taken on the first day of school last year.

I noticed an "SPD moment" today. Actually, I've always noticed it, but just thought about sharing it today. ;) My son can't stand watching anyone eat cereal with milk. He thinks it's disgusting and upsetting. He had a feeding specialist for a few months when he was 3 years old who would come over and help him "play with food". He's still a pretty picky eater, although he's really opening up to new things and I think it's due to the fact that he takes school lunch most of the time.

GWTW Junkie 11-08-2007 12:38 PM

Wow, I've never heard of a feeding specialist. I wish I could get a hold of someone like that for my six year old DS! He is the pickiest person I have ever known. We fight ALL the time over food. We've tried everything.

I personally think he has SPD too, only he is over sensitive instead of under like my DD. He has lots of sensory-avoidance symptoms, but they're lots less obvious and less intrusive than my sensory-seeker. I mentioned it to his dad and my in-laws and they flipped out and thought I was imagining it. But I told my mom I thought he had it too, and she said, I think you're right.

GWTW Junkie 11-08-2007 12:43 PM

What about food allergies? Have you all found that your SPD kid has a lot of food allergies? My DD is allergic to corn, milk, all nuts, and she can't tolerate whole wheat at all. I suspect she is also allergic to citrus fruits and tomatoes. Oh and cats, just like me. My DS is allergic to milk and shellfish. Probably some other things as well, but definitely not peanuts--the boy lives on PBJ sandwiches! made the decision whether or not to take school lunch VERY easy for us. :)

We're also avoiding food coloring because I've heard a lot of moms say that is a trigger for poor behavior. Anyone have any experience?

goodlicorice 11-08-2007 02:32 PM

If DS would ever eat anything, we'd probably figure out if he was allergic to something. ;)

No, really. How did your realize your daughter was allergic to so many things? Did you have her tested?

I keep hearing about the GFCF diet, but I just don't see how we could even try it. DS LIVES off dairy and wheat and I've considered the fact that this may contribute to his SPD issues.

Oh, the feeding specialist was also his OT. It was pretty funny because she'd come teach my son to eat while I'd go to my Weight Watchers meetings!

*sigh*

momof2stampers 11-08-2007 03:04 PM

Quote:

Originally Posted by GWTW Junkie (Post 7661625)
What about food allergies? Have you all found that your SPD kid has a lot of food allergies? My DD is allergic to corn, milk, all nuts, and she can't tolerate whole wheat at all. I suspect she is also allergic to citrus fruits and tomatoes. Oh and cats, just like me. My DS is allergic to milk and shellfish. Probably some other things as well, but definitely not peanuts--the boy lives on PBJ sandwiches! made the decision whether or not to take school lunch VERY easy for us. :)

We're also avoiding food coloring because I've heard a lot of moms say that is a trigger for poor behavior. Anyone have any experience?


I think I have SPD as well, and I have LOTS of food allergies (shellfish, corn, apples, plums, peaches, pears, almonds (apple family, and not nut), most raw veggies, raw egg, beef and chicken fat). My DS is severely allergic to shellfish, and my DD is lactose intolerant. She does not have SPD, as a diagnosis, but 80% of us are on the spectrum, and since it's heriditary, I think of her sometimes. I also think my Dad has SPD, and he has SO MANY food issues - he's even had 2/3 of his bowel removed because of food issues.

So, I don't know if there is a connection, but given my family history, I wouldn't be shocked by it.

momof2stampers 11-08-2007 03:05 PM

Quote:

Originally Posted by goodlicorice (Post 7662603)
If DS would ever eat anything, we'd probably figure out if he was allergic to something. ;)

No, really. How did your realize your daughter was allergic to so many things? Did you have her tested?

I keep hearing about the GFCF diet, but I just don't see how we could even try it. DS LIVES off dairy and wheat and I've considered the fact that this may contribute to his SPD issues.

Oh, the feeding specialist was also his OT. It was pretty funny because she'd come teach my son to eat while I'd go to my Weight Watchers meetings!

*sigh*

What is that?

Gluten free...?

goodlicorice 11-08-2007 03:20 PM

Quote:

Originally Posted by momof2stampers (Post 7662928)
I think I have SPD as well, and I have LOTS of food allergies (shellfish, corn, apples, plums, peaches, pears, almonds (apple family, and not nut), most raw veggies, raw egg, beef and chicken fat). My DS is severely allergic to shellfish, and my DD is lactose intolerant. She does not have SPD, as a diagnosis, but 80% of us are on the spectrum, and since it's heriditary, I think of her sometimes. I also think my Dad has SPD, and he has SO MANY food issues - he's even had 2/3 of his bowel removed because of food issues.

So, I don't know if there is a connection, but given my family history, I wouldn't be shocked by it.

Wow! I've never heard this!

But since learning of DS's diagnosis, I've noticed some symptoms in myself. I don't do well in crowds, and after a while in IKEA I feel like I'm having a panic attack. ;)

Oh, GFCF is gluten free casein free. Casein is milk protein, I believe.

Oddly, my son really likes seafood, but won't touch a hamburger. Not that that's a bad thing, I guess.

momof2stampers 11-08-2007 03:27 PM

Quote:

Originally Posted by goodlicorice (Post 7663086)
Wow! I've never heard this!

But since learning of DS's diagnosis, I've noticed some symptoms in myself. I don't do well in crowds, and after a while in IKEA I feel like I'm having a panic attack. ;)

Oh, GFCF is gluten free casein free. Casein is milk protein, I believe.

Oddly, my son really likes seafood, but won't touch a hamburger. Not that that's a bad thing, I guess.


It's talks about it in The Out of Sync Child.

If you think about the people that you know, and how some are more sensitive to hot or cold, some people have texture issues when they eat, some find the sound too loud in theatres, some hate the tags on their shirts or the seam in their socks, etc.

Most of us only have a few things here and there, and so it's not considered the disorder, but it is considered to be on the spectrum. I think that for it to be considered `the disorder', it has to get in the way of normal life.

Supposedly, the 20% that do not have it are usually the popular kids. They have no awkwardness, understand social cues, don't have the same gross motor issues, etc.

momof2stampers 11-08-2007 05:39 PM

Does anyone else's kids have `tics'?

My son licks the palm of his hand every 5-10 seconds. It's not hygenic, and as he gets older, it may interfere with his social life.

Does anyone else experience anything like this?

goodlicorice 11-08-2007 06:38 PM

I've read the Out of Sync Child, but it's been a few years. Time to dig it out again.

My son doesn't really have tics, but he still has bathroom issues. He holds in his stool, then runs to the bathroom, often too late. I know this will interfere with his social life soon. He had his first "accident" at school a few weeks ago. The school nurse called and asked me to bring a change of clothing for him. I thought he'd be embarrassed or ashamed, but he really wasn't, which kind of bugs me. I knew it would happen sooner or later, and was hoping it would be while he was still young enough that it wouldn't be a huge deal. (Now if he were in 5th grade, it would be a BIG deal.) But I guess I was kind of hoping he would be a little more self conscious about the whole thing and that it would help put a stop to it.

I've talked to a pediatrician and a counselor about it and the advice they both gave me was to teach him to use the toilet daily. How helpful. :mad: Like this whole time I've just been teaching him to hold it in as long as he can.

Actually, come to think of it, he may actually have a tic I didn't realize was a tic until now. Every once in a while he'll let out a high pitched yelp or squeal, usually when he's really excited. I guess that's self-stimming, right?

GWTW Junkie 11-09-2007 06:44 AM

I guess the only thing I'd call a tic for my DD is the arm flapping. But she has made a lot of progress lately stopping herself. For about a month I have been making a concerted effort to say, "try not to flap, sweetie," and giving her a hard hug. Now it seems like she's noticing that she's doing it.

Maybe you could point out to your soon every time he does it? I'm sure he doesn't notice it at all. Not an angry voice, just a, "try not to do that, buddy." Just making him aware. Or give him a different behavior (a less intrusive one) to do instead. Our chiropractor has taught my DD to press her palms together, hard, instead when she realizes she is stimming.

Goodlicorice (hijack--your username makes me laugh because I hate licorice! and your real name makes me do a double take because my DD is named that and I'm always trying to not type it out here in cyberspace, LOL), my son does a high-pitched yelp a lot as well.... I think it is kind of a defense mechanism, to let off nervous energy and also give him a minute to process whatever he's reacting to.

On the bright side, he used to head-butt all the time, and since we took him to the chiropractor, he hardly ever does that anymore. Thank goodness! Did anyone ever say if they've tried chiropractic before?

goodlicorice 11-09-2007 07:26 AM

I remember head butting. DS head butted my very pregnant belly so hard one time I just sat down and cried from the pain. Fortunately he doesn't do that much anymore!

The whole goodlicorice thing comes from DH's total misunderstanding of the term "bad juju". Some guy he knew would talk about stuff being bad juju and my husband thought it was something to do with candy and made up his own term which he started using for stuff that he thought was cool as a kind of inside joke.

I've pointed out DS's yelping just because it hurts my ears, but I'm not sure he's really aware he's doing it at all.

I've never tried going to a chiropractor for myself or my son. I didn't even realize it could be helpful for this type of thing.

momof2stampers 11-09-2007 07:52 AM

Quote:

Originally Posted by goodlicorice (Post 7668007)
I remember head butting. DS head butted my very pregnant belly so hard one time I just sat down and cried from the pain. Fortunately he doesn't do that much anymore!


My DS doesn't head butt, but he LOVES to ram himself into me or DH. As he gets bigger, he going to start knocking us over soon. We are trying to stop it, and even the teachers have told him once or twice to stop when they see him do it, but it doesn't seem to change the behaviour.

We have tried to point gently that he should stop licking his hand, and he does stop immediately, but he'll do it again within 30 seconds again. I don't want to harp on him for it, so we point it out to him a couple times a day.

We have also not tried a chiropractor. I didn't know there could be benefit. I have never agreed with taking a children to a chiropractor because spines are so fragile, and I don't want it messed with so early in life. Does he do more than manipulating the back?

goodlicorice 11-09-2007 09:35 AM

Yeah, we still get the ramming thing here. He's just so physical! He's poor little brother gets most of it, although DS is always squeezing me, pinching me, and leaning on me.

Another obnoxious habit DS has is lifting up the back of my shirt to press his face on my back. I'm constantly reminding him to stop it. He's always touching my face and eyes too, and his hands are always pretty grubby. I've contracted pink eye more than once in the past few years, although DS hasn't! I think he's just the carrier. ;)

GWTW Junkie 11-09-2007 01:28 PM

momof2stampers, I would find a chiropractor who is up to date. They are very different nowadays. There are all kinds of new techniques and none of them are bone-crunching like they used to do. My favorite one used to just press with one finger for a few seconds and then let go and you would not believe it, but it worked every bit as well as the bone-crunching kind!
The gal I use now is AMAZING... she knows all about SPD because her oldest son has it. She is also one of the only pediatric-certified chiropractors in the US. It is so awesome that God led us to her! Her theory is, there's nothing wrong with the body that can't be at least helped by removing the subluxations and allowing the energy to flow freely through the body. When a bone is "out" there is a big knot of electricity piling up there. She's especially doing cranial work with my DD now. When the plates of the skull and the neck vertebrae are in alignment, the cerebral fuild, which feeds the brain oxygen and nutrients, can flow freely around the brain. It makes sense that more oxygen and nutrients to the brain would help SPD.
She's also taken a very active interest in her diet, her activities... kind of taken on more of a therapist role, like suggesting hand-pressing instead of arm flapping and recommending Kindermusik and ballet. She's doing a case study on her, so this has all been free, which blows me away! It's been very cool to have someone who knows both personally AND professionally all about SPD. Oh and she stamps, too! A match made in heaven :) LOL
So that's where we're at right now. My DD is too old for the Birth to Three county program, and we're trying to avoid putting her in with all the severely disabled kids in the public school program. So we're on our own...

GWTW Junkie 11-09-2007 01:34 PM

Yeah, the physicalness gets to me after a while. I'm like, don't touch me! Just get off me! Luckily my husband likes to rough house with them, though.

They can really hurt you sometimes.... I have to brace my whole body when my DD comes running to give me a hug, or I'll land on my backside. and she has almost choked me more than once, actually bruising my windpipe one time. It hurt to swallow for a day or two afterwards.

I try to remember that they don't mean it, and just be grateful that they are at least affectionate. It would be so hard to have a kid who never returned any of your affection.

goodlicorice 11-09-2007 02:24 PM

Quote:

Originally Posted by GWTW Junkie (Post 7671671)
Yeah, the physicalness gets to me after a while. I'm like, don't touch me! Just get off me! Luckily my husband likes to rough house with them, though.

They can really hurt you sometimes.... I have to brace my whole body when my DD comes running to give me a hug, or I'll land on my backside. and she has almost choked me more than once, actually bruising my windpipe one time. It hurt to swallow for a day or two afterwards.

I try to remember that they don't mean it, and just be grateful that they are at least affectionate. It would be so hard to have a kid who never returned any of your affection.

Exactly, Elisabeth! I have to remember this. I'm just not normally a touchy feely person so it drives me nuts to have him hanging on me all day. I try to make sure to give him big strong hugs, compressing his shoulder joints.

We also play the "burrito game" where we wrap him up in a blanket on the floor. We name all the ingredients we're putting on the burrito when we press and squish him, "Here's the cheese...(squish) and the beans (squish, squish)....He loves it. I think that may come from the Out of Sync Child Has Fun book.

Does anyone use the brushing technique? DS's OT gave us a few brushes a few years back but we're not consistent with it. When DS comes across one of the brushes occasionally he'll ask to be brushed.


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