Mothers who have a child w/ Sensory Integration Dysfunction

Lindsey - posted on 07/21/2011

My daughter went to ot, pt, speech and behavioral eating therapy. She was/is very texture sensitive. She has gotten a little better with clothes that go on her body. She still won't wear anything with buttons, or jeans, pants with buttons, stuff like that. I was able to get tights for dance class on her, but I have to cut slits in the top to give her a less tight feeling on her tummy. She will now wear leggings, but that took a lot of work. As for eating, where to begin. She is very strong willed and makes sure things are done her way. She won't eat a host of things and will make herself vomit or just does vomit if something does not work right in her mouth. She vomit sometimes if we just mention eating noodles or pizza. It can be frustrating sometimes. I know she can't help it, but it takes a lot of patience, a lot of the time. She also has some pretty unfortunate behavioral issues, but is very intelligent, and sometimes uses her intellect to manipulate everyone, children and adults alike, to get what she wants or doesn't want to do. Does anyone else have a child who has behavioral issues that are combined with the sensory stuff? She also has low muscle tone (hypotonia), which frustrates her because it effects her balance and core muscle strength. Anyone else have a child with a combination of these symptoms?

Michelle - posted on 07/20/2011

i am in the same boat my son is 4 1/2 and just been diagnosed with SPD and we have many struggles everyday. I also currently trying to get him assistance in school which is very hard because it is not a recognised disability or diagnosis. My son has all sorts of problems including social, behavioural and eating. i am on a long road and it has taken me a year just to get him seen by a specialist. My son is a different person in different environments which has made it hard for me to show people what he is really like. So i feel for everyone who's child and family are also struggeling without help

Ursula - posted on 03/29/2010

When children have SPD Sensory Processing Disorder, they can be hyper and hypo sensitive. Hyper meaning overly sensitive, for example, taking a shower feels like nails on their skin or hypo meaning they don't feel pain at all. Sometimes they can actually be both at the same time. And, it can vary from sense to sense, hypo with touch issues, hyper with auditory. That is why it is so difficult to diagnose, actually the last I read there is not yet an officially recognized diagnosis of Sensory Processing Disorder,hence the reason some insurance companies don't cover OT services. My son is 13 and we struggle every day with sensory issues.

Tammy - posted on 03/26/2010

I know exactly what you are going through! My middle son has this and tactile dysfunction as well. He is in 3rd grade now and has a teacher that just loves him and helps him get through his day better. He has been in OT for almost 3 years for it, and will be graduating in a couple of months.

Susan - posted on 03/25/2010

Check out Stacey Robinson's blog about sensory issues! http://bit.ly/EFTV_Blogs

Susan - posted on 03/25/2010

There is a new show coming titled "Exceptional Family TV" ya'll should check it out and pass this link on to your friends! http://bit.ly/EFTV_Launch

Jerica - posted on 03/25/2010

Is he recieving OT? What have you tried? My son recieved one on one OT, PT and speech when he was little. He will be 11 in a couple weeks. He was two polar opposites rolled into one, he had sensory issues that were avoidance issues in touch, sound and taste. But he also saught out specific sounds, motions, taste, touch. He is in a main stream classroom and doing well for the most part. They have provisions to allow him to get out of the room if he feels over whelmed, but he doesn't need that alot.We also have a diagnonis of ADHD, OCD and autistic tendencies.
I wish you the best of luck, every journey through motherhood is diffrent may yours have little bumps but high peaks.

Amy - posted on 03/23/2010

My 4 1/2 yr old (5 in June) I do beleive has SID; I was looking through her previous evals from her theropy place that shut down 1 yr ago and notes and stated that she had 6 sensory issues that were definate w/an explenation on each one. She has become better yet out of OT for that length of time. She still chews on things, aggressive at times, whiny, hates some loud noices, hair brushed, "picky eater", the list goes on. She too is speech/language delayed (articulation) and motor delayed. I am in hopes of finding a definate answer when I take her to the Learning Center @ TX Childrens next month. I have a checklist of this condition and I am able to check a bit of these areas that she has had bad issues with and able to tolorate to the ones we have problems with still. Any suggestions are helpful.

Anni - posted on 03/03/2010

My 13y/o daughter and 12 y/o autistic son have sensory issues. How old are your kids? Therapy helps immensly. They learn coping strategies to deal with it. My daughter had issues wearing clothes, and foods. She uses the techniques she learned EVERYDAY to cope with the discomfort. My sons issues are different...sound and overstimulation are major stressors for him.

Rachel - posted on 12/12/2009

Both my children have it,

Monique M - posted on 12/05/2009

I hv twins (girl/boy) r turning 4 in February 2010. May son was always slower than my daughter developmentally and the older he got he was doing strange things and hard 2 handle. The peditrician just brush all my concerns under the table. I started my own research of his symptoms and I contacted Early Interventions and he was diagnosis with Sid by the age of 2. One year later they diagnosis him with having Autism. If you look at my son he looks like an average sweet little boy and people don't understand that he has alot of issues. My husband and I get a lot of slack about disciplining him, and he's just a picky eater, and etc, my favorite is you need 2 watch him better b/c he is out of control. The outside world does not understand.

Crystal - posted on 12/04/2009

Quoting Dee:

I have a 12 year old son with SID. He also has mild CP. Chase's main issues are with feeding (certain textures of food are a major issue) and touch. If you have not read them the books "the out of sync child" & "the out of sync child has fun" were a lifesaver for me when he was younger. When I read the first chapter of the out of sync child and it talks about getting hair cuts I cried uncontrollably...... Since Chase has a food issue we get alot of comments about him just being a picky eater and we should force him to eat the spaghetti or macaroni or whatever food it is. I wish it were that simple. Change is also a major problem. If something in his world changes its usually is alot for him to deal with. His dad & I split recently and overnite visits & time with his dad are something that Chase is just not capable of handling. Right now he is in mainstream school (with modifications) and we have been so blessed with a wonderful principal & teachers. I look forward to hearing your stories as well..........

my son is almost 6 and he sounds like you son as well. my son has autism, but sounds exactly like you son when it comes to eating and change. though he is getting better with change..its baby steps thats for sure. my son is also in mainstream school and i thank god for the great teacher and great students. he has his own E.A and has come a long way. i will have to look into those books, as i have been meaning to get them, just havent yet.

Jody - posted on 12/03/2009

Try going to the website www.spdfoundation.net They have a ton of information & you can search for services in your area. I work in the office of a sensory integration OT clinic in Michigan & my 6 year old son with autism also has sensory issues. Many schools do not understand the issues that our kids have to dael with at all, which makes it that much more difficult. I have seen several kids who attend Waldorf affiliated schools & these schools go above and beyond to provide what our kids need to be successful. Good Luck!

Christine - posted on 12/02/2009

Another thing that we have tried with out son is weighted blankets. Alot of therapy places can help you find them and I know some churches in our area makes them... It helps calm him and the weight of the blanket makes him feel safe and comfortable. I don't know if that helps anyone just thought I would throw it out there...

Christine - posted on 12/02/2009

Quoting Jeanna:

My youngest son has SID/SPD and my heart goes out to all the families dealing with this! I had never even heard of it until my son was being tested for Autism. My best advice to parents, is keep up with the OT! If your child has tactile try body brushing, it calms my son so quickly! I have also noticed that when he starts getting out of control joint compressions help calm him. The one thing we can't seem to help him with is riding in the car! We have tried all kinds of things but if he is riding for to long, it never fails he gets sick! Any suggestions?

The body brushing is the only way that I can now touch my 16 year old.  When he was a baby he would scream when we touched his arms,hands,feet or head.  We did the brushing technique for almost 4 years and now he can atleast stand to be touched everywhere but his feet. We are still working on the feet.lol

Heidi - posted on 11/30/2009

Quoting Bridgett:

My son is 6 years old. He was receiving Sesory Integration Therapy for several months, unfortunetely the facility closed, and now I went to St. Joseph's Hospital and my insurance is deniying him therapy. They say it takes anywhere from 6-1 year before you notice any real changes. I noticed after about 3 months or so, which really helped with his combined ADHD and his aggression problems. Not to mention he's on a waiting list at Children's Hospital for Feeding Issues, which is probably sensory related... So I fully understand, not much about SID, but can understand the frustrations of child with special needs.

As for the waiting list Children's, we were on that list since January and we received the 1st appointment in the middle of July.  We have been on a wait list for other clinics since Feb. and we recently have begun to receive calls for the appointments which are scheduled in Dec.  Depending upon the clinic, you may have to make your own calls to that receptionists office weekly to follow up with their schedule and insurance approvals.  In our case, the receptionist had the approval and sat on it for a month before having the sense to notify us.  This was after mentioning it to her for an entire 6 weeks...2 of those weeks prior to the approval date.  Due to her screw up we have lost 4 weeks of treatment and will have to reapply for the Rx after Jan 1st.

Simply put, good luck with the waiting list, do call them weekly.

Kerrianne - posted on 11/29/2009

Oh I just read the post above here about the bumper and crasher. Have you read the book The OUt of Sync Child?
Anyways my son has always been like that and it was not until I read that book that I understood why. He benefited from pillow squishes and playing hot dog to give his nervous system the stimulation it was seeking.Also a big yoga ball he could have access to all day was good.

Kerrianne - posted on 11/29/2009

Hi! I have one son with autism and SID and a daughter with SID. Recently I attented a course in the Masgutova Reflex Integration method. I have had a physiotherapist do this method on him for the last 3 years but decided to learn myself.
It has proven very effective for SID. Here's a link to her website www.masgutovamethod.com

Heather - posted on 11/29/2009

What about children on the other end. My son loves to crash into the couch ,jump and do just about any kind of stimulating activity, I believe they said he craved vestibular stimulation. I was told that there are children who don't like certain textures and feelings, and then there are children who look for things to stimulate them. Does anyone have a child like this?.

Terry - posted on 11/19/2009

Dee~Force them to eat it , lol.My daughter Destinie will simply puke if something of the wrong flavor or texture enters her mouth. We were in a restraunt once and there was celery in something she ate i dont remeber what it was but we became aware of it in a very unappetising way.People have a hard time understand that sensory issues are real problems and that they arent made up issues or simply a child being difficult.

Sabrina - posted on 11/18/2009

My 9 Year old son has SPD / SID
please do yourself a favor and search amazon for some books regarding this.
I did at the advice of a therapist and it made a world of diff.
There is one that stands out....since my son's issues made it difficult to socailize, that hurt his heart more than anything...its was a book called " its too hard to be your friend" something along those lines. shouldnt be too hard to find.

also there are these weighted therapy blinkets that you might look into, google that.

just some tips from my own experiances. look forward to getting to know you....

Jeanna - posted on 11/17/2009

My youngest son has SID/SPD and my heart goes out to all the families dealing with this! I had never even heard of it until my son was being tested for Autism. My best advice to parents, is keep up with the OT! If your child has tactile try body brushing, it calms my son so quickly! I have also noticed that when he starts getting out of control joint compressions help calm him. The one thing we can't seem to help him with is riding in the car! We have tried all kinds of things but if he is riding for to long, it never fails he gets sick! Any suggestions?

Anni - posted on 11/17/2009

2 of my kids have it, but it has been extremely difficult for my now 13 y/o. She had to go to therapy for it because at one time she would not wear clothes or eat many foods. She still uses all the coping techniques taught to her in therapy.

Cindy - posted on 11/16/2009

My 5 year old daughter has SID. She is seeing a OT and things are going pretty good. She does not like her hair to be touched, if her clothes are not warm she wants them in the dryer before she wears them. She hates certain textures. It can be frustrating for her, but she is a fighter. She also has Social anxiety disorder and a congential heart disease.

Melanie - posted on 11/16/2009

My son has sensory issues regarding food. He's almost 2 and we still have to feed him baby jars (feeding is such and issue). he stops breathing a lot and when he gets frustrated it makes it worse. We can let him strop just not for very long because of this (u can imagine how mischevious he is now). People annoy me that say oh he's just fussy. They haven't been there when we try to change anything and seen how upset our son gets. We know a lot of it is behavioural but we are waiting for a surgeon to hopefully close the whole in his stomach. xx

Stacie - posted on 11/15/2009

A few weeks ago I saw this post and learned about Sid As I was reading I related of the stuff with my daughter. On tuesday I went to her for parent teacher conference and I met with her OT and she offered me literature about SID. II work on a School bus with special needs children and often wondered why a kid at age 9 did not know how to tie his or her laces or other tasks we take for granted. I have two kids with special needs and did not realize all the issues that exisit now I need to getr help and understand SID better any and all suggestion is deeply appreciated

Angela - posted on 11/03/2009

There is a physicans group that will help and www.sensoryintregation.org.uk & TOO LOUD TOO BRIGHT TOO FAST TOO TIGHT, by Sharon Heller

Amy - posted on 11/03/2009

I am new to this....my son is 2 (will be 3 in January). He has been in the local birth to 3 program since he was 15months. Now its transition time. He has had speech therapy and occupational. Though he no longer sees speech, we have ot 1x month and its coming to an end. He also sees Child development Pediatrician along with his regular pediatrician. The OT and I believe he has SPD. How do I get it diagnosed on paper? Will I EVER get that on paper? Struggling to see if he qualifies for any help with speech and occupational until he starts Kindergarten. Any suggestions/input would be greatly appreciated!!! Doent tolerate change of seasons very well, changes in schedule/ routines, caregivers, bathing, change of clothes, food..there are sooo many things.....

Shante - posted on 11/02/2009

I have a three year old son who has it almost severely. We went through several months of him not eating because of it. How did you get disability for child with SID? Just wondering, I am always looking for additional resources and help.

Angela - posted on 11/02/2009

Sensory experiences include touch, movement, body position, vision, smell, taste, sound and the pull of gravity. The process of the brain organizing and interpreting this information is called sensory integration. Sensory integration provides a crucial foundation for later, more complex learning and behavior. http://www.sensoryintegration.org.uk/abo...
Heller introduces Sensory Integration Disorder that
“…encompasses a constellation of symptoms, including tension, anxiety, avoidance, stress, anger, and even violence, that result from aversive or defensive reactions to what most people consider nonirritating stimuli…As many as 15% of otherwise normal adults have a nervous system that is overly sensitive to sensation” (2002, p.3).

I am doing a thesis on SID.

Angela - posted on 11/02/2009

Quoting Katherine:

Quoting Stacie:

Can someone explain Sid to me so thar I can understand better

Sensory Integration Dysfunction...I think I spelled it right. Where things that deal with senses irritate a person.... like loud noises, too quiet, sensitive to touch. Things like that.

Andrea - posted on 11/01/2009

Quoting Bridgett:

My son is 6 years old. He was receiving Sesory Integration Therapy for several months, unfortunetely the facility closed, and now I went to St. Joseph's Hospital and my insurance is deniying him therapy. They say it takes anywhere from 6-1 year before you notice any real changes. I noticed after about 3 months or so, which really helped with his combined ADHD and his aggression problems. Not to mention he's on a waiting list at Children's Hospital for Feeding Issues, which is probably sensory related... So I fully understand, not much about SID, but can understand the frustrations of child with special needs.

My ds who is 3yo has been in therapy for about a month and we have already seen some progress. He only goes once a week for an hour but, we have seen a major difference. They think he also has ADHD but we wont know for sure till he is older. He will also be getting help with the school district if he get into the special ed preschool. He too has sensory issues in his mouth. He would shove food into his mouth because the sensory receptors didnt recognize that there was food in there. They gave us a lot of tips on how to fix that. Different way to fix the food (spicy or with extra flavor), watch while he eats and if you see them not chewing push on their cheek and it will get the food to the tongue and they will start chewing, and to get tough foods like beef jerky. They also said to use an electric toothbrush because it gets the receptors going. They said to do it before meals but thats been a little hard. You should talk to your sons school about OT in school...our school district offers it and I am pretty sure all schools do. You should also maybe ask about getting an evaluation done with the school district. My son is getting a test on Friday with whats called ChildFind. It will test all areas of development. My son doesn't concentrate very well and is like a pinball machine so I know he will get in. Good luck and let me know if anyone needs anything. I love having support.

Bridgett - posted on 10/29/2009

My son is 6 years old. He was receiving Sesory Integration Therapy for several months, unfortunetely the facility closed, and now I went to St. Joseph's Hospital and my insurance is deniying him therapy. They say it takes anywhere from 6-1 year before you notice any real changes. I noticed after about 3 months or so, which really helped with his combined ADHD and his aggression problems. Not to mention he's on a waiting list at Children's Hospital for Feeding Issues, which is probably sensory related... So I fully understand, not much about SID, but can understand the frustrations of child with special needs.

Corina - posted on 10/29/2009

I have a 15yr old son. When he was younger i noticed he wouldn't eat his baby food or much of anything else, I also couldn't put sun screen on him or lotion without him throwing a fit. I started taking him to OT. They worked with him till he was about 9yrs old then our insurance wouldn't cover it anymore and the therapist said he was doing good. It took a long time with not much progress but we finally got so that we could put sunscreen on him and he finally was eating bread for peanut butter sandwich's but we're still struggling with eating other foods. Right now all he'll eat is french fries, chicken patties or nuggets, green beans, ham and hot dogs. Nobody understands, i get the usual (he's a picky eater you need to just make him eat it.) So then i have to explain he has sensory issues. The therapist had said his sensory of touch and texture was heightened because of his visual impairment but he was never officially diagnosed with anything. It's been a struggle and he's not getting any better and with him older now i don't know how he's getting the nutrition he needs. If anybody has any idea's or places i can get help i would be very grateful. I look forward to getting to know everyone. Thank you!

Corina

Stacie - posted on 10/28/2009

thankx katherine I understand alittle better

Katherine - posted on 10/28/2009

Quoting Stacie:

Can someone explain Sid to me so thar I can understand better

Sensory Integration Dysfunction...I think I spelled it right. Where things that deal with senses irritate a person.... like loud noises, too quiet, sensitive to touch. Things like that.

Katherine - posted on 10/28/2009

 Quoting Penny: My daughter is 8 and still can't be anywhere near the vacuum cleaner.  I also have to cover her ears when there is loud singing, clapping and even the flush of a toilet sets her off.  It is easier now that she is older since I can communicate to her ahead of time when I know there will be a loud noises so she can get prepared.  Does your son also have issues with an environment that is too quiet?  My Julia can't stand it when it is too quiet.  She now creates her own white noise by singing or humming which helps in situations when it is too quiet or too loud.  :)  How old is your son? 

Christa - posted on 10/26/2009

My 12 yr old son had SID. It is just one of the things that he has. He is an Aspie. So that and many others give him trouble. With help from his psychologist he has made great progress. My advice is to get as much help from Doctors, counselors. And make sure when you children go to school you know your rights in your state. Most states have to make things easer for your child. BUT you have to know your rights and in most times FIGHT for what ever you get!!

Angela - posted on 10/25/2009

My oldest has SDI and it's been a really long road. After I divorced her father I went back to school and now I am doing research on the connection between fibromyalgia and sensory integration. I have found many links and I would love to chat with moms with other children who have this. It would make my research all that better. My first question is how many of you have fibromyalgia or have been battered prior to giving birth to the SDI child?

Stacie - posted on 10/24/2009

Can someone explain Sid to me so thar I can understand better

Penny - posted on 10/24/2009

Quoting Katherine:

My son has that. At least thats what his therapist told me. Certain things like vacuums, the "happy birthday song, and clapping irritate him to no end. (:

 My daughter is 8 and still can't be anywhere near the vacuum cleaner.  I also have to cover her ears when there is loud singing, clapping and even the flush of a toilet sets her off.  It is easier now that she is older since I can communicate to her ahead of time when I know there will be a loud noises so she can get prepared.  Does your son also have issues with an environment that is too quiet?  My Julia can't stand it when it is too quiet.  She now creates her own white noise by singing or humming which helps in situations when it is too quiet or too loud.  :)  How old is your son? 

Katherine - posted on 10/22/2009

My son has that. At least thats what his therapist told me. Certain things like vacuums, the "happy birthday song, and clapping irritate him to no end. (:

Diane - posted on 09/27/2009

My son goes to Cooperative Educational Services (CES) in Trumbull, CT and has O.T. for that. My hometown schools don't understand therefore they didn't agree with it nor do it.
We have Consultants at our home school system -IPP Institute for Professional Practice who do not understand Sensory issues and refuse to learn them or apply them.

Nicole - posted on 09/26/2009

My son has it and he is out of control if he has free play time but if he has structure he actually does very well and can follow directions. He just turned 3 a couple months ago. His OT said he need a productive way to burn off his energy.

Andrea - posted on 09/26/2009

My son who is almost 3 was recently diagnosed with SID...we are still waiting for OT. I hope it works for us because he is really out of control. I am still waiting to see if he will be placed on social security. He is really a good kid but his sensory issues just get the best of him. I hope all goes well. I am so glad there are others out there fighting the same issues I don't feel so alone.

Heidi - posted on 09/25/2009

Hello moms, where to start...my son just turned 2 at the beginning of this month. He is seeing a feeding therapist who informed me that he is a behavioral eater. She thinks he has sensory issues. He has not been diagnosed with anything yet. We also have to go to see the behavioral/developmental specialist, neurologist, speech therapist, PT and OT.

Janene - posted on 09/24/2009

Don't give up!!! While you cannot cure SID somethings can be overcome. My son is now 12 and he has learned to overcome so many issues. We all have SID in small ways. I hate the textures of certain foods to, just not to the extent that it disrupts my life. As for "Forcing" anyone to eat, or touch, anything is completely insane! It's not that these great kids won't, they CAN'T!

For Michaelann, If possible I would try a different therapist. We all react differently for different people. Perhaps your son just doesn't feel comfortable with or cannot bond with his therapist. Don't worry about your therapists feelings. This is something they should also recognize and want to help with.

This is such a tough disorder because there is such little understanding. I've seen Pediatritions that didn't even know what I was talking about! The general public may often think you're just "making it up". SO many just can't comprehend it. It is SO real. Good luck to all of you.

Sabrina - posted on 09/24/2009

Is this another name for SPD...sensory processing disorder? or close to it in symptoms?

my son had SPD in 4 areas! eek. my son also recieves disability.

Michaelann - posted on 09/23/2009

My son is 21 months old and his therapist feels he has SID. He definately has severe oral aversions. He was born with cleft lip & palate & pierre robin so he has never had anything by mouth. He has been tube fed since he was born. He had a trach placed when he was 4 weeks old. I wish the docs had stressed how important it was for me to keep offering him a pacifier or something to his mouth, but they didnt :(
When his therapists try to hold him or touch him, he cries uncontrollably. I don't notice it as much as when I work with him...so I'm not sure if its just him being stubborn, or if there really is a sensuory issue with that as well. I can only imagine there would be...he spent 6 weeks in the hospital at birth, half of that time on a vent - so he was not a cuddly, swaddled baby :(
Are there any hopes of overcoming this? It is all new to me.

Mandy - posted on 09/14/2009

OMG how stressful. i have one child with SPD or SID and that is hard I can not imagin haveing three. I feel your frustration.