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Old 05-13-2008, 07:43 PM   #401
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I wish we had a sound proof room.

Does anyone have a SPD kid with high pain tolerance? My dd has extremely high pain tolerance and when she gets upset she will bang her head against walls and such very hard. We try to stop her but she is physically hard to control. I am nervous that one day she will end up with a serious injury and we wont know about it because she doesn't ever tell us when she gets hurt. Should I take her to the doctor regularly for examines on a regular basis?
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Old 05-14-2008, 05:22 AM   #402
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My DS has a high pain threshold, but he's finally getting more tuned in, now that he is almost 8.

My DS didn't feel his asthma attacks until about 6 months ago. Because he didn't feel his asthma attacks, he showed no signs of difficulty breathing (except for his chest heaving in and out under his t-shirt). At one point he had a life-threatening infection in his neck, and we didn't know about it. He did eventually stop moving his neck and we took him to the doctor, and they thought he should be screaming in pain by that point.

We have noticed that he feels the pain when it is obvious that he should be hurt - falling and scraping his knee. We think he realized that he would get attention. But, when the pain was internal and he had no indicators that he should be in pain, he had no idea.

My father has the same high pain threshold and it has put his life in danger a few times - he perferated his bowel and didn't see a doctor for 7 days because he didn't think it was serious.

So, from our experience, it can be serious, but it has always worked out in the end. Yes, we don't know as soon as medical attention is warranted, but we do eventually know and get to a doctor in time. I think if you worry about it too much, you are borrowing stress and we have enough stress with these kids to begin with.

One thing that was recommended to me, was to have him lie in bed at night and have him clench his entire body and relax the muscles one at a time, at my command - make a game of it. Also, have her close her eyes you run a feather along certain body parts, and then ask her to identify where the feather is. There are other variations on this. These activities will help her tune into her body and learn to differentiate the parts from eachother. It will also tune her mind into the feelings and sensations of her body. The hope is that when they are pain, they will feel it beacuse they are more tuned in to their body.
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Old 05-14-2008, 07:32 AM   #403
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I know a child who has some mild sensory issues but not enough for the diagnosis of SID. As he/she is getting older, the child is developing more tolerance for certain sensations. Try reading The Out of Sync Child.

Some people in the older generation and some people who are fortunate to be unfamiliar with these problems act negative when these issues are discussed. Perhaps some of them are judgmental or jealous because these things were not understood and supported when they were raising their kids. Some think kids have these problems because the parents don't use physical punishment as they did with their kids. I suggest providing the information and a brief note to you from the pediatrician saying - "Give me a call if you have more questions about your child's sensory integration issues." If that doesn't stop the negativity, ignore them when they comment, change the subject, and stop sharing info with them. If they ask or comment, just say, "I sometimes find your comments on this subject hurtful, so it is something I prefer not to share with you. Let's talk about what is new with you." They may realize that being negative and closed minded can leave them out of the loop.

Best wishes on your journey with this.

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Originally Posted by GWTW Junkie View Post
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!

Last edited by Michelle NH; 05-19-2008 at 09:00 AM.. Reason: Shortened and corrected errors.
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Old 05-19-2008, 06:36 AM   #404
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My name is Catherine, I am a stay at home mom of 3 beautiful children (6 year old, a 4 year old,17 mos.) and it is my 4 year old that we are trying to get help for. At first we thought it was an intolerance to certain foods he was having, when he has these (chocolate, milk, food coloring and others we haven't figured out yet) he just sits on the floor rocking and crying/screaming uncontrollably. He just tunes everything out around him when he is having one of these "meltdowns", and we are usually out somewhere when they occur too. We usually pick him up, take him home (cries the whole way home) , put pj's on him (still crying), and then will sit there with him rubbing his back until he falls asleep in his bed. When he wakes up he is fine, but he does complain of a tummy ache, headaches, sore arms and legs...he is also sluggish. But as I have read and researched like you wouldn't believe, we now feel that he has Sensory Integration Disorder and perhaps some food intolerances/allergies.
We started seeking help from our family dr., she sent us to a ped's dr at our local children's hospital but he told me there was nothing wrong with him...no allergies or intolerances. Go home and have fun, oh and read "the out of sync child"...bye! I cried and cried, because I know there is something not right, I know that my son isn't like the other children..I am a trained E.C.E. teacher, a mom of 3. I just couldn't understand why these dr's wouldn't listen to the "expert" of my son...and was so hurt!! I called my family dr. again, she has set up an appointment for us to see another ped's dr in her building and won't make any referrals until this dr see's us in June. I have had 5 dr's look at him, 3 of them believe me that there is something not right...but they either send me to a dr that feels my son isn't important and is there for at the bottom of the pile. OR they send me away with no help at all...
I found a man in our congregation at church who works with Autistic children, as well as a family in our church who has 2 Autistic children who have been amazing help for us. They have opened some doors for us, they have been someone to lean on...given me resources I wouldn't usually have. In the end I went to a duty clinic, all dressed up, I introduced myself in a professional manner and I walked out of there with a referral to a developmental clinic. We are currently in the ever so much fun "waiting stage" of our search for help!
One of the friends told me to make up a "time line" or a list of things/ behaviors I have noticed with my son. Fax it off to the developmental clinic to go with our referral, so I did and I figured out the approximate time this all started to occur. My 4 year old son was relatively fine up until this certain time period (about the time when he turned 3)...didn't realize this until I did the time line.
I have read so many books on SID....I could swear that my son could be the poster child for these books...He met pretty much every one of the things on the checklists in the books, and he even had some of the "bonus" traits too...
I am feeling lost, overwhelmed, not sure where to go next to get the help we need, so heart broken almost for my son and the things he goes through everyday. I feel frustrated I can't get someone's attention to get the help my son needs...
The other thing is my dh doesn't really get along well with our 4 year old son, because he just doesn't understand/or get him and what he is going through. I have tried to explain it to him, but he just gets easily frustrated himself...and doesnt' get what our son is going through.
Our son can't wear certain clothes, he can't get himself dressed at all (too much going on around him), he has to have routines, can't take him to certain stores (he has "meltdowns" almost as soon as I open the stores doors). Alot of the time we have to feed him his supper, he has to have either Ketchup or BBQ sauce on his food...there is never too much of it. He had 7 pacifiers that he had on a clasp thing on his pants, he would rotate them every so often...he has given these up but has to have a blankie.
The list just goes on and on...lol, sorry for the novel.

Hugs,
Catherine
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Old 05-19-2008, 07:09 AM   #405
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Catherine, WOW! My heart goes out to you.

I got the impression from your post that these `episodes' are often centered around food. Is this right? If so, you can try an elimination diet before seeing a doctor and try to figure a few things out on your own.

My DS is on one now, and I got the list of things to eliminate from a site about ADHD (he also has ADHD). If you think it would be too difficult to eliminate a lot of things at once, you can try a few things for 2 weeks, and then bring them back one at a time. Then another and another. When you bring them back, give them to him in very high doses and watch for reactions - could be mood, hives, rashes, etc. Afterward, you can eliminate a few other things and go through the cycle again. For a child who is so tied to a few things, it may be really hard to do a full elimination, and that's why I suggest a few foods at a time.

Have you thought about lactose intolerance? My DD is LA and used to be horrible to be around - whining, crying, defiance, and eventually we figured out that she complained of a lot of belly aches. Once we eliminated dairy, her whole personality changed and if she gets any dairy now, her stomach can hurt for weeks afterward (no vomiting, no diarrhea, etc) and she is horrible to be around.

At the same time as you figure food out, you can read the Out of Sync Child and the The Out of Sync Child Has Fun. Other books are The Highly Sensitive Child, The Sensory Sensitive Child, and there are more. The Out of Sync Child Has Fun has a lot of activities and ideas to help with these kids, and there is a lot you can do in your own home. If you go through the thread, you will also see a lot of ideas we've talked about.

Last, if you want get an opinion on the idea of SPD, go to an occupational therapist. They will do an assessment and give you your child's strengths, weaknesses and ideas to help your child. If you have the funding/insurance, you may also want to consider doing OT, depending on what the results of the assessment are.

FYI: We also have gotten nowhere with the medical community with our son over the last 5 years. Within the last 6 months they have started to consider SPD when giving a diagnosis for other ailments, but we've never had a pediatrician willing to look at DS for SPD. We did see a pediatrician last month for DS's anxiety/panic attacks and she is fascinated by DS and would like to follow him through childhood. YAY! We are finally getting somewhere.
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Old 05-19-2008, 07:59 AM   #406
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Catherine,

Welcome to the group. I know I've found some peace in knowing that I'm not alone or crazy - this thread has been a big help. We are unexpectedly moving (3rd time in a year) back to the States, so we'll see how my DD handles that. Right now we're just dealing with lots of screaming, not listening, and her being very angry over seemingly silly things (screaming that she hates us and will never speak to us again because we didn't get her a glass of water or read her a book before bed). I'm going to be a single mom while my husband job shares between Mpls and Paris, so I'll probably be going insane during my "solo" times! Glad you found us - hope we can be of some help with your son.
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Old 05-19-2008, 08:01 AM   #407
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Dear Catherine,

I have no expertise besides being a mom and having an open mind. I have friends and neighbors with children who have various challenges along the autistic spectrum, and this is how I know that the earlier a child gets help with developmental challenges, the better. I also know that it can be very hard to be heard. I read your post and I just want to congratulate you on how had you have pushed to get the help you need for your son. Be tenacious! Keep at it until someone with the knowledge you are seeking hears you and helps your son. I would suggest checking out internet forums for parents of children with sensory integration disorder and aspergers, autism, and pervasive developmental disorder and well as other issues on the autistic spectrum. Your child may need therapy now to help him. Check into pediatric occupational therapists in your area. Also, call your public elementary school right away and ask them if they will do a "Child Find" or other screening now to see if your child may need early intervention services before entering school. I would even write a complete list of symptoms and ask them in writing if they will evaluate him. You could also seek a neuro-psycholgist and ask for a complete evaluation. These neuro-psychology docs are very good at sifting through these issues. You may have to pay a lot of money for this, but I would do it and I would do it asap. I'd also suggest that you keep a food diary and offer him one of the suspected foods (as long as it is not proposing a danger to your son) every few days and then write down any reactions to the foods like severe behavioral meltdowns, crying, complaints of discomfort, etc. Then I would remove ALL those foods entirely from his diet. and journal the reaction to not having these foods. A mom in my community has a son with Autism and she has documented very carefully and has found that her son's symptoms are greatly diminished when he is on a strict diet that excludes all foods she has learned increase his symptoms. She is emphatic about it and the school has found it to be true with this child over the past several years. He gets NO wheat gluten and NO dairy of any kind. He is given only small amounts of white sugar on occasion. On occasion when it is given to him by accident, his symptoms ramp up for a day or so.

Quote:
Originally Posted by maiahs_momma View Post
My name is Catherine, I am a stay at home mom of 3 beautiful children (6 year old, a 4 year old,17 mos.) and it is my 4 year old that we are trying to get help for. At first we thought it was an intolerance to certain foods he was having, when he has these (chocolate, milk, food coloring and others we haven't figured out yet) he just sits on the floor rocking and crying/screaming uncontrollably. He just tunes everything out around him when he is having one of these "meltdowns", and we are usually out somewhere when they occur too. We usually pick him up, take him home (cries the whole way home) , put pj's on him (still crying), and then will sit there with him rubbing his back until he falls asleep in his bed. When he wakes up he is fine, but he does complain of a tummy ache, headaches, sore arms and legs...he is also sluggish. But as I have read and researched like you wouldn't believe, we now feel that he has Sensory Integration Disorder and perhaps some food intolerances/allergies.
We started seeking help from our family dr., she sent us to a ped's dr at our local children's hospital but he told me there was nothing wrong with him...no allergies or intolerances. Go home and have fun, oh and read "the out of sync child"...bye! I cried and cried, because I know there is something not right, I know that my son isn't like the other children..I am a trained E.C.E. teacher, a mom of 3. I just couldn't understand why these dr's wouldn't listen to the "expert" of my son...and was so hurt!! I called my family dr. again, she has set up an appointment for us to see another ped's dr in her building and won't make any referrals until this dr see's us in June. I have had 5 dr's look at him, 3 of them believe me that there is something not right...but they either send me to a dr that feels my son isn't important and is there for at the bottom of the pile. OR they send me away with no help at all...
I found a man in our congregation at church who works with Autistic children, as well as a family in our church who has 2 Autistic children who have been amazing help for us. They have opened some doors for us, they have been someone to lean on...given me resources I wouldn't usually have. In the end I went to a duty clinic, all dressed up, I introduced myself in a professional manner and I walked out of there with a referral to a developmental clinic. We are currently in the ever so much fun "waiting stage" of our search for help!
One of the friends told me to make up a "time line" or a list of things/ behaviors I have noticed with my son. Fax it off to the developmental clinic to go with our referral, so I did and I figured out the approximate time this all started to occur. My 4 year old son was relatively fine up until this certain time period (about the time when he turned 3)...didn't realize this until I did the time line.
I have read so many books on SID....I could swear that my son could be the poster child for these books...He met pretty much every one of the things on the checklists in the books, and he even had some of the "bonus" traits too...
I am feeling lost, overwhelmed, not sure where to go next to get the help we need, so heart broken almost for my son and the things he goes through everyday. I feel frustrated I can't get someone's attention to get the help my son needs...
The other thing is my dh doesn't really get along well with our 4 year old son, because he just doesn't understand/or get him and what he is going through. I have tried to explain it to him, but he just gets easily frustrated himself...and doesnt' get what our son is going through.
Our son can't wear certain clothes, he can't get himself dressed at all (too much going on around him), he has to have routines, can't take him to certain stores (he has "meltdowns" almost as soon as I open the stores doors). Alot of the time we have to feed him his supper, he has to have either Ketchup or BBQ sauce on his food...there is never too much of it. He had 7 pacifiers that he had on a clasp thing on his pants, he would rotate them every so often...he has given these up but has to have a blankie.
The list just goes on and on...lol, sorry for the novel.

Hugs,
Catherine
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Old 05-19-2008, 07:03 PM   #408
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Tomorrow we go for my dds first ARD meeting. She turns 3 next Monday and will start a preschool program for children with disabilities next fall. I am so scared because I have heard horror stories about these meetings and that those in our district do as little as possible to help the child. I am a very soft spoken person but I have to change that in order to get what my dd needs. I am very scared and nervous.
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Old 05-29-2008, 06:40 AM   #409
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How did it go Casey?
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Old 05-29-2008, 06:43 AM   #410
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Is anyone else finding out that their child has co-morbids?

We are. It seems like the list keeps getting longer.

DS now has SPD, ADHD-inattentive, an LD, an anxiety disorder (don't have an actual diagnosis yet) and is gifted.

It seems like most of it intermingles quite often. The more we find out, the more we are understanding him and able to get the best for him.

Just wondering if anyone else is having a similar experience?
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Old 05-29-2008, 06:49 AM   #411
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Our lovely DD last night informed us that she wants to be a boy. She even wants to change her name. <Gulp> I'm trying to remain calm, as she's been a Spiderman freak for almost 2 years now. She'll be 5 this August. She loves anything boy - boy clothes, colors, gear, hats, etc. Although as she is getting older, she has at least attempted to put on a dress a few times. Daddy thinks it is all a phase...I'm hoping so too, but I don't want to dismiss her true feelings either. Yet another issue to bring up with the pediatrician when we get back home in 15 days, but who's counting....ME! ;0)
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Old 05-29-2008, 07:10 AM   #412
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Quote:
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How did it go Casey?
It went a lot better than expected. The only thing we are disappointed in is that she only gets 30 minutes of inclusion time but we may be able to increase that. She will get OT, pyschological, vision, and mobility therapy
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Old 05-29-2008, 07:48 AM   #413
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Quote:
Originally Posted by shari stamper View Post
Our lovely DD last night informed us that she wants to be a boy. She even wants to change her name. <Gulp> I'm trying to remain calm, as she's been a Spiderman freak for almost 2 years now. She'll be 5 this August. She loves anything boy - boy clothes, colors, gear, hats, etc. Although as she is getting older, she has at least attempted to put on a dress a few times. Daddy thinks it is all a phase...I'm hoping so too, but I don't want to dismiss her true feelings either. Yet another issue to bring up with the pediatrician when we get back home in 15 days, but who's counting....ME! ;0)
yikes!

But, I would agree with your DH. Whether it's a phase or something long term, you still handle it the same way - allow her to express herself the way she wants to. She's just trying to figure out her own identity. I have to share that there were many times I wanted to be a boy. The boys had the fun games, the fun clothes, and seemed to get away with more. When I was 13 I went through it again because I didn't want periods.

Also, my DS went through a girl stage and pink was his favorite colour for 2 years. My DH did not handle it well.
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Old 05-29-2008, 07:48 AM   #414
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Quote:
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It went a lot better than expected. The only thing we are disappointed in is that she only gets 30 minutes of inclusion time but we may be able to increase that. She will get OT, pyschological, vision, and mobility therapy

I would definitely say it was successful! I would take the OT, and other help over school-help any day!

What is mobility therapy? Is that like physiotherapy?
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Old 06-01-2008, 09:34 AM   #415
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Quote:
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BTW, I think all of us on this thread have thought we were crazy at some point!
I can SO relate to that statement.
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Old 06-01-2008, 10:01 AM   #416
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The OT has reviewed my sons file and i have recently enlightened her about what the school is doing and what we are doing (we live in a remote community so only see the OT once every 2 months) and she believes we need to look into behaviour issues and attachment issues. DS has become very aggressive, has become obsessed with numbers and being first and has been saying to the teacher that "if my mum was here I would be better". He also tells me he would be better if I went to school with him.
DS has been getting very angry about the word "no" so much so that he vibrates and shakes when he is mad, screams and then sobs. This has happened 3 times this week alone.
I am just wondering if anyone else has these issues too?
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Old 06-01-2008, 12:58 PM   #417
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Quote:
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The OT has reviewed my sons file and i have recently enlightened her about what the school is doing and what we are doing (we live in a remote community so only see the OT once every 2 months) and she believes we need to look into behaviour issues and attachment issues. DS has become very aggressive, has become obsessed with numbers and being first and has been saying to the teacher that "if my mum was here I would be better". He also tells me he would be better if I went to school with him.
DS has been getting very angry about the word "no" so much so that he vibrates and shakes when he is mad, screams and then sobs. This has happened 3 times this week alone.
I am just wondering if anyone else has these issues too?

That sounds like anxiety, including, but not exclusive to, separation anxiety.

From what I understand, anxiety is common with SPD, but, like SPD, it manifests differently for every child.
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Old 06-01-2008, 01:27 PM   #418
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Quote:
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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.
I'm sorry I only just found this thread, so I've been reading through all the old posts and this one hit home for me. Our 2.5 year old son is a very picky eater (extremely picky). We have an evaulation with the OT on Wednesday to determine if he has SPD, we've spent much of the last year trying to determine if he was just a stubborn picky eater, or if there was truly an underlying condition to it. My son loves breakfast foods, but he eats dinner only once or twice in a 7 day period. I finally convinced the pediatrician this was important by keeping a food diary for 10 days. She faxed it over to the OT and the dietician and they both said this was a child they need to see asap. So thankful they did. I'm just now beginning my journey of reading up on this topic and thanks to all the ladies who have shared!

Cindy
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Old 06-04-2008, 07:00 AM   #419
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Our 2.5 year old son is a very picky eater (extremely picky). We have an evaulation with the OT on Wednesday to determine if he has SPD, we've spent much of the last year trying to determine if he was just a stubborn picky eater, or if there was truly an underlying condition to it.
Hi Cindy--sounds exactly like my son--only he's been that way this whole time and he's now 6.5. I hope they give you some help and you don't get to the point that we are at, where every meal is a knock-down, drag-out fight.

But hey, we made progress last week. He ate celery with peanut butter AND raisins on it! All those different textures in one mouthful??? You could have knocked me down with a feather!
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Old 06-04-2008, 07:19 AM   #420
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Hey everybody, sorry I haven't been around in a while. I have been ridiculously busy and everything that wasn't absolutely essential had to be jettisoned for a while. Now I'm playing catch-up!

Had to share one really good moment from our trip to the zoo last week! As you all probably know, zoo trips can be very overstimulating, so I planned very carefully in how I packed, what stroller/wagon to use, what clothes to put them in, etc.
My kids blew me away!!! My DD, whom I expected to be stuck firmly in the wagon all day due to low muscle tone and "afraid" of everything, walked the entire time, went on a pony ride, AND went with me on the chair lift! I couldn't believe my eyes. I was so proud of her.
I think all that extra excercise also did us a big favor in that she has moved on from flapping her arms as her primary "stimming" behavior, to pressing both hands to her lips (which is still odd but is a lot less disruptive than the flapping). I am delighted as she has been "stuck" on that stimming behavior from infanthood. Her holistic chiropractor and naturopathic doctors think that it is a very good sign that she has moved on.
We all agree that the extra excerise of summer seems to be key. The only bad side is that she sleeps so hard now that we have had to go back to Pull Ups because the bed was wet every single night. We also did that because it was making us very frustrated personally and we don't want to be taking it out on her when it is not her fault.
Anyway, long story short, we seem to have made a little breakthrough in her case.
Also, my DS is making some headway--I think he is just getting enough older that we are now able to reason a little with him and he can push down his food phobia enough to enable him to take a taste of some things. We've also lowered our expectations and are just pushing "tastes" now. And I just tell people who think we're being too-lenient parents to take a HIKE!!! I don;t care what they think or are rude enough to verbalize to me. I've also stopped giving info to my inlaws unless it happens to come up, as they seem disturbed by the mention of it. On the other hand, I've practiced saying "my kids have some issues" to several people I've just met and you know, it has been liberating. People mostly WANT to understand, I think. The awareness level is rising dramatically--so awesome!
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Old 06-04-2008, 09:01 AM   #421
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I think I may suffer a breakdown or something ladies. I seriously don't know how much more I can take. My dd keeps having these metldowns that last forever and she loses the ability to communicate so I have no idea what is going on. I am at the end of my rope for some reason. Today I just cried in the shower. I must sound like a horrible mom
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Old 06-04-2008, 10:31 AM   #422
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I honestly cannot believe the trouble I am having for getting my son the help he needs, I didn't ever imagine that I would have this much trouble getting him help or assessed. The dr's just don't seem to go with "mom's intuition", or they have never heard of this Sensory Integration Disorder and or they just love to brush you off as a crazy mom who doesn't know what she is talking about.
I saw a ped's dr yesterday, the 2nd one, she told me that I have taken a small problem and dug for something more serious. Comforting eh?? She also told me that my son is "playing" us, that he can do everything but he just doesn't want to. She proved this to me because she got him to dress himself and put the toys she had out for him to play with...makes a mom feel itty bitt and stupid!! I know I am not making this up, I know I am not taking a small thing and making it bigger than what it is. My son has a problem!! We feel that it is SID's and also perhaps Autism (mild form), but this dr said it probably is adhd but she isn't willing to deal with it at his age. This dr also told me he doesn't have Autism at all...
But on the flip side I got a referral to a developmental team at our local children's hospital, got a call 2 days ago saying the are very concerned about my son...so much so that they are referring us to the Autism team for assessment. Sooo now who are you to believe or what are you to do when you get conflicting info from so many dr's???? if my son doesn't have autism or other probs then why are is these developmental team and Autism team concerned??? I just don't get it...
So that is my novel for now,lol...oh before I go I highly recommend the following books to read:

~The Everything Parents guide to Sensory Integration Disorder
~The Highly sensitive child
~The Explosive child
~Raising a Sensory Smart Child

Read all of these and they are great !

Hugs,
catherine
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Old 06-04-2008, 10:48 AM   #423
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Catherine, the struggle sounds sooooo familiar!

Lyssa, how old is your DD? My 6 1/2 yo DD is wetting the bed again and has been for 6 months now - she was dry for 3 years before that. She is definitely sleeping far deeper, so we've adjusted her bedtime, but she's just lying there and not falling asleep. I don't want to put her in pull-ups because it has a real stigma for her at her age, and after being dry for so long. We have sleep on a pad (those pads that they put under moms in labor) and get her up every night at 10:00 to pee. We catch her in time most nights now.

For your DS, my DS is 7 1/2 and we also noticed about a year ago that he was able to start trying a lot more foods. The last year has been so freeing for us with regards to food. Hope the trend continues for you!

Casey, HUGS!!!!!!!!!! Have you gotten any help with her meltdowns? My DD has serious meltdowns at that age (she does not have SPD, but borderline ODD). The psychologist we sought (sp???) help from told us that we were allowing the meltdown to progress too far before intervening and we were letting her get to the point where she could no longer calm herself. It made total sense to us. We were told to discipline her as soon as she stomped a foot, crossed her arms, clenched her fists or even glared at us. We told her very calmy that we were not angry with her, and we didn't want to punish her, but we wanted to help her learn how to calm down, so she had to sit in a special place to calm down - not a time out though, because that had negative connotations. We were amazed with the results! Within a month or two the meltdowns had completely stopped and never lasted more than a minute or two and never got to the same level. About every 6 months we have to go back through this cycle with her, and to be honest, I am TERRIFIED of her teen years To put it in context, when she had meltdowns, they could last for 2 hours, and she has ripped the moulding from the walls, put holes in doors, destroyed the carpet in her room, and more. These were not mild meltdowns and we were able to eliminate them by following the doctor's instructions. There was more advice, if you want to hear it, but I don't know your DD to know if it would be relevant. Let me know if you want to hear the other advice.
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Old 06-04-2008, 02:07 PM   #424
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Casey, HUGS!!!!!!!!!! Have you gotten any help with her meltdowns? My DD has serious meltdowns at that age (she does not have SPD, but borderline ODD). The psychologist we sought (sp???) help from told us that we were allowing the meltdown to progress too far before intervening and we were letting her get to the point where she could no longer calm herself. It made total sense to us. We were told to discipline her as soon as she stomped a foot, crossed her arms, clenched her fists or even glared at us. We told her very calmy that we were not angry with her, and we didn't want to punish her, but we wanted to help her learn how to calm down, so she had to sit in a special place to calm down - not a time out though, because that had negative connotations. We were amazed with the results! Within a month or two the meltdowns had completely stopped and never lasted more than a minute or two and never got to the same level. About every 6 months we have to go back through this cycle with her, and to be honest, I am TERRIFIED of her teen years To put it in context, when she had meltdowns, they could last for 2 hours, and she has ripped the moulding from the walls, put holes in doors, destroyed the carpet in her room, and more. These were not mild meltdowns and we were able to eliminate them by following the doctor's instructions. There was more advice, if you want to hear it, but I don't know your DD to know if it would be relevant. Let me know if you want to hear the other advice.

We are currently on a waiting list to get an appointment with a psychologist and they told us it might not be until next year we get in. We have tried several things with her meltdowns. We tried ignoring, stopping them at the first sign, we put her in a safe spot and she will bang her head or hit things around her. hers can last for 2 hours or so as well.
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Old 06-04-2008, 02:11 PM   #425
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I honestly cannot believe the trouble I am having for getting my son the help he needs, I didn't ever imagine that I would have this much trouble getting him help or assessed. The dr's just don't seem to go with "mom's intuition", or they have never heard of this Sensory Integration Disorder and or they just love to brush you off as a crazy mom who doesn't know what she is talking about.
I saw a ped's dr yesterday, the 2nd one, she told me that I have taken a small problem and dug for something more serious. Comforting eh?? She also told me that my son is "playing" us, that he can do everything but he just doesn't want to. She proved this to me because she got him to dress himself and put the toys she had out for him to play with...makes a mom feel itty bitt and stupid!! I know I am not making this up, I know I am not taking a small thing and making it bigger than what it is. My son has a problem!! We feel that it is SID's and also perhaps Autism (mild form), but this dr said it probably is adhd but she isn't willing to deal with it at his age. This dr also told me he doesn't have Autism at all...
But on the flip side I got a referral to a developmental team at our local children's hospital, got a call 2 days ago saying the are very concerned about my son...so much so that they are referring us to the Autism team for assessment. Sooo now who are you to believe or what are you to do when you get conflicting info from so many dr's???? if my son doesn't have autism or other probs then why are is these developmental team and Autism team concerned??? I just don't get it...
So that is my novel for now,lol...oh before I go I highly recommend the following books to read:

~The Everything Parents guide to Sensory Integration Disorder
~The Highly sensitive child
~The Explosive child
~Raising a Sensory Smart Child

Read all of these and they are great !

Hugs,
catherine
Oh my goodness this sounds just like what we are going through. Our ped thinks we are making something out of nothing and honestly so did a lot of therapists dd used to have. We have two amazing therapists for unrelated issues in dd and one of them said in her 28 years of working with kids she has never met a mother whose intuition was wrong. I know there is something "different" with my dd and it is a fight to get help
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Old 06-04-2008, 02:22 PM   #426
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Oh my goodness this sounds just like what we are going through. Our ped thinks we are making something out of nothing and honestly so did a lot of therapists dd used to have. We have two amazing therapists for unrelated issues in dd and one of them said in her 28 years of working with kids she has never met a mother whose intuition was wrong. I know there is something "different" with my dd and it is a fight to get help

We've been told the same thing many times. The first people to tell us that there was something wrong, was occupational therapists. This is their field. It was OTs who first `discovered' SPD, and it was OTs who came up with the therapies for SPD. Doctors are still chasing their tails on this. They simply don't know enough about it yet. It's still the OTs who are the experts. In fact, in Canada, it's only an OT who can diagnose SPD. Doctors cannot do it because it's an assessment, rather than listening to the heart, feeling the belly or looking in the ears.


Casey, as to being on the waitlist, is there anyway you could privately pay for one appointment in the meantime to get some direction? For us, it cost $135 for the hour, and that's all we needed in the end. To me, $135 is worth the money if you get your sanity back now instead of waiting a year. I don't know if you can swing that though. Even if you go for a single appt privately, you could still leave your name on the waitlist.
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Old 06-04-2008, 02:54 PM   #427
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Well we had our first evaluation with the OT for my 2.5 year old ds. She was very helpful and asked lots of questions, and let me talk about anything and everything I could think of in relation to the questions that she asked. She believes he exhibits some mild SPD tendencies in some areas, but since a diagnosis isn't required for us to continue to see her (b/c of his documented eating habits) she isn't willing to make that diagnosis yet. She has recommended the Out of Sync Child book as well as Sensational Kids to try some tips and see if that helps with his minor behaviour issues.

She believes his eating problems are primarily due to his being a visual eater, and as a result wants us to try a feeding technique called Food Chaining (the title of a book about the topic). We're gonna give that a try and contact her again in a couple of weeks for an update.

Anyone have any experience with "food chaining"?

(And thanks for listening!)

Cindy

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Old 06-05-2008, 05:27 AM   #428
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Cindy, I have never heard of `food chaining'.


For anyone who is interested, I went to a seminar last night about children and anxiety. It was really interesting and i learned a lot about both my kids (and myself ). It's worth researching if your child ha excessive tantrums, meltdowns, shyness, withdrawals from life, bed wetting, stomach aches, etc.

It may not be anxiety, but some of it might be because SPD would create anxiety in many kids. So, if we know that some of it derives from anxiety and not SPD, then it gives us another tool in our arsenal to deal with them.

One thing he talked about that hit home for me was a stress curve (wish I could draw it here). At the peak of the peak of the curve is where we have maximum output and ability. So, if a child is halfway up the curve on the left, then they can be pushed to handle more. But, if a child is overwhelmed is halfway down the other side of the curve (already have too much stress), then pushing will make it worse and backing off in some way is the better way to go. So, as you all know, our kids react to sensory stuff when they are overloaded, and it's our job to know when they can be a pushed a little bit to desentitize a little and when to back off. He gave all sorts of methods for backing off, but it totally depends on the stressor.

So, anyway, I saw a really strong relationship between his talk and SPD, that I had to share. If anyone else looks into it and finds a good book, I would love to hear about it. I'll post if I find a good book on the topic.

ONe author he mentioned a few times was _______ Jerome.

The organization who hosted the speaker last night will be posting all the overheads at some point. Once they are online, I will link the site.
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Old 06-05-2008, 07:15 AM   #429
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The OT said that food chaining is a strategy she doesn't get to employ very often. But she said it should work very well with visual eaters. DS eats mostly white or very pale foods, nothing with any real color in it. So the food chaining idea is to make other foods look as much like the foods he already eats but in a texture or taste that he refuses right now. The example she used in her office was that he eats goldfish. So she took some regular goldfish and then added some of the pretzel like goldfish. Ds ate almost all of the regular goldfish, then turned to the pretzel like ones. He took one bite, didn't like the crunch and put it down. Later during the food portion of the visit I redirected him to the pretzel goldfish when he was playing with the regular goldfish. He said "Yucky!" And we both said "No, yummy!" and took bites of our own. He did take another bite of the pretzel goldfish later but didn't finish it.

Another idea is to put similar colors out. Once again with the goldfish idea. Take a snack time and put in a bowl some brightly colored goldfish and one or two baby carrots. Then when he is eating the bright orange goldfish point out that the carrots are the same color.

She said this might take weeks before he gets to the point he'll even touch the other foods. But that he was willing to try the pretzel goldfish was a promising indicator. She says there is this hierarchy of how we get to the point of eating our food, with the first steps being visual. Ds is getting stuck at that first step the visual and not progressing to the other steps.
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Old 06-06-2008, 06:40 AM   #430
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Hi All... only on page 3 of the thread but I want to post and say hi to subscribe. I have to run and pickup up DD (3.5) from preschool...

She has apraxia (motor planning speech disorder) and "sensory issues" which sound like mild SPD.

Ran across this thread while looking for a summer support group... scared that (special ed) preschool ends next week... she is SO MUCH WORK and I won't get a break or support all summer...
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Old 06-06-2008, 07:05 PM   #431
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OK, so I just finished reading the whole thread. DD is similar in a lot of way, she is a sensory seeker. Clumsy, rough, still mouths things... that's all I can think of right now. We did brushing for a while, didn't see a change. We have a sensory diet that I have been majorly neglecting. Reading the thread has made me find my patience again... all her BAD behavior lately is just my neglect. Ok, not blaming it ALL on myself but remembering she isn't a rotten apple helps renew me to get my books out and start reading again and planning some activity and/or sticking to the sensory diet.

My DD is an only child and I have really been stalling on deciding whether to have another. I look at my BILs DD and see how EASY she is... would I be so lucky if I gambled and got pregnant again?
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Old 06-06-2008, 08:43 PM   #432
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So, we decided to work on orange slices as our new food this week. Today was the second day in a row ds got mandarin orange slices for lunch. Yesterday he just looked at them. Today he actually touched them.

Then for dinner we ate pizza. Not only did ds actually eat the pizza, he tried to pick up the whole slice and eat it like the rest of us (completely new behaviour for him). In the end he asked for it cut up so he could use his fork, but he did try. He ended up eating almost 2 whole slices. Truly shocked and amazed here.

Gotta be happy with the small steps.....

Cindy
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Old 06-06-2008, 10:12 PM   #433
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So, we decided to work on orange slices as our new food this week. Today was the second day in a row ds got mandarin orange slices for lunch. Yesterday he just looked at them. Today he actually touched them.

Then for dinner we ate pizza. Not only did ds actually eat the pizza, he tried to pick up the whole slice and eat it like the rest of us (completely new behaviour for him). In the end he asked for it cut up so he could use his fork, but he did try. He ended up eating almost 2 whole slices. Truly shocked and amazed here.

Gotta be happy with the small steps.....

Cindy
WOW, that is awesome! Congrats to DS and his amazing Steps!!!
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Old 06-06-2008, 10:13 PM   #434
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ok ? for everyone. What type of discipline do you guys use for your child with SPD? My dd is 3 and we are having trouble finding a form of discipline that works with her. She will do time out but by the end of it she forgets what she did and is clueless.
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Old 06-07-2008, 07:49 AM   #435
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So, we decided to work on orange slices as our new food this week. Today was the second day in a row ds got mandarin orange slices for lunch. Yesterday he just looked at them. Today he actually touched them.

Then for dinner we ate pizza. Not only did ds actually eat the pizza, he tried to pick up the whole slice and eat it like the rest of us (completely new behaviour for him). In the end he asked for it cut up so he could use his fork, but he did try. He ended up eating almost 2 whole slices. Truly shocked and amazed here.

Gotta be happy with the small steps.....

Cindy
YAY!!!!!
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Old 06-07-2008, 07:51 AM   #436
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ok ? for everyone. What type of discipline do you guys use for your child with SPD? My dd is 3 and we are having trouble finding a form of discipline that works with her. She will do time out but by the end of it she forgets what she did and is clueless.
Magic 1-2-3 works for mine.

However, if it's an issue caused by inattention (ADHD-inattentive) or sensory seeking or avoiding, I use avoidance if necessary, rewards and baby steps.
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Old 06-09-2008, 10:52 AM   #437
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Wow, lots of new people lately! Welcome to you all. If you don't get your questions answered, keep asking and someone will get around to it. We're all really busy, as only parents of "quirky" kids know! But we've got to stick together because the support is just not there...

Casey, my DD has such a high pain tolerance that she has seriously burned herself and not even cried. It is a little frightening! We have started telling her when things ahould hurt, like if she clocks her head on something and doesn't even appear to notice, we actually do draw her attention to it, rub it, say "ooh, that must have hurt, huh?" "where did it hit you?" and help her try to feel, locate and sense the pain. I'm no expert on the subject, but I think drawing her attention to it could be helpful in her recognizing it herself.

As far as discipline, that is a tough one. I think the main thing to recognize is why she is doing it--is it because she is (or thinks she is) incapable of obeying, or does she just not want to obey? There is a big difference. My DD doesn't seem to take it to heart either or will laugh when she is apologizing. A lot of it is just social imaturity, I think. We had so much better luck with obedience when we were given some tips on making sure she heard and processed the commands, made eye contact and broke down the steps.

Karen, my DD (bed-wetter) is four and a half. She just recently regressed into night time bedwetting and the occasional nap. I hear ya on the Pull Ups, but we can't help it. I was getting so upset at all the laundry every day and taking it out on her when it is not her fault. She honestly sleeps like the dead when she finally falls.
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Old 06-09-2008, 10:54 AM   #438
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hey Amy, my nephew (2.5) was just diagnosed with apraxia. Can you tell me what it is and share any tips and websites you've found helpful? My B and SIL are devastated. I hope I was able to be a little helpful in sharing the emotions I went through upon finding my kid was not "perfect" and all the resources that are out there and the growing awareness.
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Old 06-09-2008, 10:59 AM   #439
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I think I may suffer a breakdown or something ladies. I seriously don't know how much more I can take. My dd keeps having these metldowns that last forever and she loses the ability to communicate so I have no idea what is going on. I am at the end of my rope for some reason. Today I just cried in the shower. I must sound like a horrible mom
I have cried in the shower, too, sweetie. Try to find comfort in the fact that it bothers you so much BECAUSE YOU CARE so much. You're a GREAT mom and you love your DD fiercely. If you were a bad mom you wouldn't care so much. You are a good mom, strong and beautiful and brave, and your daughter will be too, some day.
This is a big bend in your road, but you WILL make it--just take your daughter's hand and both of you make the turn together.
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Old 06-09-2008, 02:29 PM   #440
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ok ? for everyone. What type of discipline do you guys use for your child with SPD? My dd is 3 and we are having trouble finding a form of discipline that works with her. She will do time out but by the end of it she forgets what she did and is clueless.
I highly recommend the book "Connection Parenting: Parenting Through Connection Instead of Coercion, Through Love Instead of Fear" by Pam Leo. My son reacted very negatively to even the mildest of coercive discipline methods but has responded to connection parenting with love, empathy, and an increased desire to get along in the family and in the world. There are other similar books, but this most recent one really brings it all together and, IMO, is an excellent approach for helping sensitive, quirky, strong-willed children become emotionally connected adults with a strong sense of self.
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