5yr old with Sensory Intergration Disorter

[Sunbeamblue2002]

Who thinks he's brave but really isn't. Ok here is the thing. 5yr old started pre-school this yr in order to prepair him for next yr. (He was 4 when he started.) Well the IEP was done and he tested 70 ok another MR/DD child (as his 11yr old sis is DD). Well the private pre school had him evaled by board of MRDD. Good news and bad. Ok not a true MR/DD but has Sensory Intergation Disorder. But they don't belive its Atisum or ADHD. Just the Sensory Intergration Disorder. So when it was the MR/DD I thought ok I kinda know what to do. Now I really don't have much of a clue as we are still in the being stages of testings. So here I am planning our summer trip and I have 2 special need children and a two yr old. Now I starting to think that I'm the one with special needs for even planning this trip. But we all really want to go. So what do I do considering that the 11yr old dose do most of the major "thrill" type rides. Now the 5yr old thinks he's brave but isn't. When you let him go on he screems When you tell him he won't like it he screems. My children look normal and I am offen told by many that they would have never guessed that my children have special needs. So please help me prepair myself and mostly my husband (because unfortunly I take up most of the burden on myself) so that no one comes away from they week feeling more fried than fun. We will most likely be staying on site at the FW cabins. As I hate to subject others to my children who can be quite loud. They also like their privacy and need to have their own beds. So sorry this post is so long and thanks in advance for any help you can give me.

 

[riu girl]

I'm sorry to ask this but what is: MR/DD? I am the mom of DD7 who has been diagnosed with SID, ADHD and autistic tendencies (but not autistic). It can all be very confusing. The therapist who labelled her with SID said that probably 90% of kids would come out with the positive results using the assessment tool that she HAD to use.
Thanks
Suzy V.

 

[Sunbeamblue2002]

MR/DD stands for Mental Retardation/Develomental Disablities. This can incompass many things from basic Develomental Delays such as my daughter has to CP (ceribal paslisy {sp?}) to any tramatic brain injury that occured before the age of 21. I was told that the only true Memtal Retardation is a Downs Syndrom person. Is SID the shorten version of Sensory Intergation Disorder. I am still very new at this DX.

 

[riu girl]

yes, sorry SID = Sensory integration disorder

 

[BWVDenise]

I'm not sure this will help but my dd had sensory issues (not exactly diagnosed, but suggested by the child study team) when she was younger (they are much less now) but we went to WDW when she was 22 months and she cried on EVERY attraction and even on the bus to and from the parks. It was all just too much for her. The shows are beautiful and the music is thrilling, but it was very frightening to her. Couple that with the summer heat and the long lines... you are a brave woman! Best wishes!

 

[jetsetter90]

My DS 11 has PDD pervasive development disorder. While not diagnosed with SID he does have some. What I noticed the most is that the level of sound on the rides is loud, or seems just right, to them it is extremely loud. He would get on a ride and automatically put his fingers to his ears. I found that giving him ear plugs helped ALOT. By the way it took me the 3rd trip to figure that one out, I felt so bad that I should have thought of it sooner.

Don't worry about his screaming on the thrill rides so is everyone else. DS actually surprised me and LOVES these rides the best, except RR.

DS doesn't like getting wet so won't do Splash Mountain but his brother is always trying to get him on. So when we plan on going I make sure he has on his "bathing suit shorts" and I have another shirt in a plastic bag just in case he gets wet and wants to change. The last time we went on he got drenched and actually said "that was fun" of course in the same sentence "dry shirt"


TTFN

Jetsetter90

 

[jimmytammy]

We have a DS 10 who has SIDS. and also Central Auditory Processing Disorder. He used to be really sensitive to touch but not as bad now. He also holds his hears a lot with loud noises around. Like another poster said, what seems normal hearing level for me is loud to him.

We homeschool now which helps him to grasp things easier. It was tough for him in PS.

With all that said, we have been going to WDW since '99 at least one trip a year, sometimes two. He loves WDW! He went from Indiana Jones stunt show being too loud to it being his favorite thing to do. And it is still loud to me. But he still requests to see it. Things have improved for him but I think it is because he has learned how to deal with the hearing and touch issues.

I commend you for going to WDW and giving your family a nice vacation. My advice is go at his pace, dont try to do it all, and enjoy! We used to try to do it all and were miserable. It took us 3 trips to figure it out. Now we enjoy it.

Have Fun!!

 

[SueM in MN]

Here's a website that might be helpful:
www.pixiedustinn.com

 

[Sunbeamblue2002]

Thank you all very much for the advice.

 

[lewdyan1]

Hi. We just returned from WDW . However, I wanted to add to the previous posts. My DS is blessed SID, ADHD and GAD. Blessed because these make up who he is, and that is a really special guy.
A couple of other things you might want to think about with SID besides loud noises are smells and lights. In Figment's Journey and Test Track they infuse a part of the ride with a nasty smell. If your child is smell sensitive, you might be able to prewarn so they can plug their nose. Also, some rides, like the two mentioned also have bright flashes of lights that can disturb some SID kids. I always let me son know when these lights are coming so he can close his eyes to prevent any bad reactions.

Everything is do-able with proper preparation, but remember to relax as this is your vacation! Enjoy.

 

[LMC]

OK, my oldest DS is borderline MR, DD, SID, ADD, has autistic tendencies, hypotonia, and a host of LD's so we have many issues to deal with. We knew before he was two that he had problems. He would not run, swing, climb (what toddler doesn't climb?), get hands/feet dirty, etc. It took alot of years to get answers when I finally decided that I would keep pursuing help until we found someone that could give us answers.

When we go to disney (we've been about 6 times since he was 5 he is now 9) he now knows his favorite rides. He gives me a hassle about some, PoC, Magic Carpets, Haunted Mansion, and I know his limits (no space mtn, or tea cups!) and I push him to go on some that he ends up loving (splash mt, TMRR). BUT, he doesn't remember from trip to trip that he did these things and actually survived and sort-of liked them so we have to start all over with the whining.

He has two younger siblings who LOVE to do these rides so we just point out that they think it is fun and he will be fine. After so many years of dealing with this you just get to a point where you think "enough is enough". After riding something one time, I don't "make" him ride again if he doesn't want to but he usually ends up wanting to ride again.

There is an excellent book called "The Out of Sync" child by Carol Stock Kranowitz. It explains SID and gives suggestions on how to deal with it.

If you have any ??'s you would like to ask, please pm me. Seriously, we have had so many issues in his 9 years I should write a book!

 

[lewdyan1]

My DS is also 9, do you get alot of support from his school?

 

[LMC]

lewdyan1:
Not sure if this was for me or the OP. Since it immediately followed my post and you stated your child was "9 yo too" I will assume it was for me. NOT HIJACKING, promise!! I had to pull him out of school after 1st grade and now I homeschool. It is by far best for him academically but he needs some social outlets. He has extreme anxiety and people phobias. His only social outlets right now are church and cub scouts and soon to be special olympics. It is so bad that the only kid he invited to his bday party this weekend (besides the obligitory cousins) is one boy from cub scouts. No kids from church and we have been going there over a year.

 

[lewdyan1]

I am sorry to hear that school wasn't working, but I am glad to know that homeschooling is. I think Special Olympics is a great place for socialization to happen and there is a lot of great gorss motor development with it...

 

[billwendy]

Hi,

I would talk to your therapist about your upcoming trip,,,,they may be able to give you some sensory diet activities/ideas to help to calm the sensory system since most of the other times its hyped up time!!!

I would suggest that you keep to normal bed times as much as you can, bring ear plugs for rides and shows,,,also a walkman or gameboy may be helpful in riding on the bus or waiting in line,,,,try to go the opposite way of the crowd if you child has sensory defensiveness. SID can be very scarey to the child, but others just cant see it,,,here is a good way to describe it to other people,,,,," You know how anxious you would feel walking down a pitch black alley in a bad neighborhood? then imagine what your reaction would be if someone tapped you on the shoulder!!" of course you would go into a total fright, flight, fight response!!!! that is not a very comfy feeling, and that is how these kids can feel!!!

if your child is not currently in occupational therapy, you might want to check it out as SI therapy really can help!!!

wendy (an OT at a pediatric hospital)

 

[Sunbeamblue2002]

Thank you all again for your help. I am still in the early stages of this whole thing. It all came about because my child just can't/won't potty train. Socialy he is able to make friends however staying with what they play with is a different story. Next yr he goes to school full time and have already started talks w/school that I want him to go to and the district. I know that I need to see a special OT however my ped specialist has never heard of SID nor dose she want to accept that thats what my child have. I have been told that its nurological but everyone keeps wanting me to she a mental health person but no one (but me) wants him on any type of meds. So I really don't know what to do as I have a private HMO and OT is not in the common range of things they offer. Everyone keeps pawning me off on the school district and the district says they can't because of funding issue etc. We are in a very strapped school district. All the info I have gotten so far is from the Board of MRDD and they said its gonna be an uphill battle because most don't know alot about it which I am finding to be the case. I am mostly worried because he just takes it all in and get so excited that he has the tendency to wander and isn't verbal enough to state who we are. Also as I said he fills he is brave when he isn't and gets himself stuck in situations where he can't deal IE wants to ride a rollercoster and then freeks out. Also loud noises do upset him as did fire works but he is learning to deal with those. They say what makes him a somewhat uniquie case is he is so willing to try and comply. Which makes it seem as if he just isn't listening or behaving and They will try to lable him ADHD (although I'm sure there is some of that underlining the whole issue). At least I feel like I have a place to start now and thank you all again for your help. PS if I ask to be sperated from other members of my faimly in louder attrations to sit near an exit w/him so that the rest of my faimly can sit in a normal section will they alow that or let us sit closer to back or exits so that we can leave if nessarcy or should I get a GAC which I really didn't think I needed as we can wait pretty good. I just know that the rest of the faimly want to do 3-d things and I know he's gonna hate that because last yr at Kings Island we went to the Sponge Bob 3-D thing and he about broke down even with the glasses off. I think it was because the non moving seats were in the frount and it was too much for him. The worst 17min of my life and I've had 3 kids. Thanks again for the help.

 

[LMC]

Since you are on an HMO this is what you should do: Ask your pediatrician for a referral to a pediatric neurologist (yes, the neurologist can diagnose SID). Once you are at the neurologist, push as hard as you can for a referral for a PT and OT evaluation. The PT and OT's address the SID. I am not sure if SID is a disability in itself but IMHO it should be. It causes these kids so many problems and they don't get the help they need.

IF your pediatrician gives you flack about a referral simply tell them that you need help and if they are not willing to get you the help you need you will find a doctor that will. I have been in this situation and when the doctor looked at me and told me that "I've done all I can do", I just returned and said, "no you haven't, you can send me to someone who can help us". We got the referral I wanted (immunology) and things turned around for us from there. I knew that I wasn't leaving that office that day without a referral or our medical records in hand!!!

Just because your doctor doesn't know about SID and obviously has their head in the sand because they haven't researched it yet on your behalf doesn't mean your child shouldn't get the services he needs.

Good luck!!!

 

[SueM in MN]

PS if I ask to be sperated from other members of my faimly in louder attrations to sit near an exit w/him so that the rest of my faimly can sit in a normal section will they alow that or let us sit closer to back or exits so that we can leave if nessarcy or should I get a GAC which I really didn't think I needed as we can wait pretty good. I just know that the rest of the faimly want to do 3-d things and I know he's gonna hate that because last yr at Kings Island we went to the Sponge Bob 3-D thing and he about broke down even with the glasses off. I think it was because the non moving seats were in the frount and it was too much for him. The worst 17min of my life and I've had 3 kids. Thanks again for the help.

For most of the shows, you choose your own seats, so you can sit with your family or choose to sit away from them where you can get out easier.
One hint: For all the shows in theaters, you enter the theater on one side and at the end of the show, you will exit on the opposite end of the theater. All of the exits have "EXIT" lights above them. Just head for those when you come in and choose a seat near those exits.
If you have 2 cell phones or walkie talkies, it will be easier to hook up again if you have to leave the theater.
One thing that might be helpful (even though it sounds weird) is to look at the the attractions that are listed as not appropriate for Service Animals. Many of those rides have loud noises, sudden bright lights or other things that (besides being upsetting for dogs) are also upsetting for people with SID. Some of the rides are not recommended for other reasons (like Peter Pan because of being in a "boat" that is suspended from the air), but it's a place to start.
I cant' make a link easily on this computer, but if you go to the disABILITIES FAQ near the top of this board, one of the entries has a link.

Also, here's a link that may help you with resources/what the school is required to provide:
www.pacer.org
PACER is based in Minnesota, but it is a resource for the whole US.

And, I agree with LMC. If you have a physician who is being a roadblock to getting what your child needs, you may need to change doctors. We did that when DD was diagnosed with CP (Cerebral Palsy) and it was one of the best things we did (hard, but good).

 

[LMC]

I disagree that you get to pick your seat. Sorry SueMN! I think every venue I have been in you pick your general area, then everyone must "slide to your left" to make room for other guests.
Now, most people like to plop down right in the middle so I am sure you won't have a problem walking around and getting a seat by the exit. Just have your GAC in case a CM gives you any flack but I've seen all kinds of people do all kinds of things and most of it slides.
The shows are great though! My SID kid still covers his ears but has otherwise gotten use to them after about 6 trips. Right now I'm thinking Tiki Room, Lion King, Tarzan, Bugs Life, Philharmagic, the new light show at MGM.

For most of the shows, you choose your own seats, so you can sit with your family or choose to sit away from them where you can get out easier.
One hint: For all the shows in theaters, you enter the theater on one side and at the end of the show, you will exit on the opposite end of the theater. All of the exits have "EXIT" lights above them. Just head for those when you come in and choose a seat near those exits.

 

[SueM in MN]

I disagree that you get to pick your seat. Sorry SueMN! I think every venue I have been in you pick your general area, then everyone must "slide to your left" to make room for other guests.
Now, most people like to plop down right in the middle so I am sure you won't have a problem walking around and getting a seat by the exit. Just have your GAC in case a CM gives you any flack but I've seen all kinds of people do all kinds of things and most of it slides.
The shows are great though! My SID kid still covers his ears but has otherwise gotten use to them after about 6 trips. Right now I'm thinking Tiki Room, Lion King, Tarzan, Bugs Life, Philharmagic, the new light show at MGM.

If you go right in to a row, you can usually go all the way past the ploppers, so we agree there. So, I kind of meant the same thing as you are saying (i.e. that no one actually says "you need to sit here". In most cases, people do want to be smack in the middle, so a lot of times getting an end seat is not a problem. It might be getting there that is.
Since I travel with a DD in a wheelchair, there are things I don't run into (other than people sitting in the wheelchair area right after the CM says to please save that area for "our guests traveling in wheelchairs."