sensory processing disorder?

[kvnchapman]

Dis folks,
Has anyone dealt with toddlers and SPD at Disney World? My twins are headed to WDW for their 1st visit this Nov. We'll be celebrating their 2nd bday!! One of the little ones has SPD, mainly vestibular and tactile. The vestibular piece is pretty pronounced and he spends a good bit of time spinning and running (primarily in circles). I'm concerned about containing him in lines without complete meltdowns. At times, he is content to be held. But other times "stillness" brings on major tantrums. Any thoughts? Strategies? Would a GAC card be helpful and if so, how? He is unaffected by lights and sounds, which is great, but I'm concerned aout the other pieces.
Thanks so much in advance!!!!!!

 

[kvnchapman]

bumo

 

[KPeveler]

It is definitely worth asking at Guest Relations about a GAC. I am not sure what they would do, but they always have all kinds of ideas.

One thing you can do is ask to use the stroller as a wheelchair. This may help with the SPD issues. I am a sensory seeker, but when I get overwhelmed, I am grateful my wheelchair provides some "personal space." If you do not get the Stroller as Wheelchair tag, you will have to park the stroller and carry the children in all queues. this would get very difficult with a 2 yr old with SPD I would imagine.

 

[Singledad]

How do they react to toys that spin? Do you think this will help 'make up' for them not doing the spinning? I second the stroller as a wheelchair suggestion along with getting something like this:

IF that may help. I know it does with my DD.

Otherwise, if your son can spin in tight circles, without the arms all the way out, he can do this in the parks and even in most lines. I just made sure to let those behind us in the line know that my kid needs a bit more space as s/he needs to spin. I never had anyone take issue with this.

what I did last year is, before we got into a line I found a fairly large area of open space, and made her play the movement game... 'okay, now 5 jumping jacks... awesome, lets see if you can spin so fast you feel like you need to sit! faster faster! okay stop and slap me five here, again again (as I move my hand)... and do that for a min or two before we got in line.

good luck and have fun! btw, my crystal ball is showing your little one falling in love with the teacups... hope you don't get sick!

 

[kvnchapman]

Thank you for the fabulous ideas! Keep 'em rolling!

 

[Singledad]

oh, as for the GAC I cannot think offhand how one could help you any better than a good plan. Also, I assume that he is in OT? I would definitely ask the OT about tips on keeping him calm in lines. Maybe they can suggest some specific Heavy Work that you can do in the park (like my movement games, but tailored to your son.).

Pushing his own stroller between lines could help too. that is, if you don't panic every two seconds thinking he is about to run someone over... that is why movement games work better for me... no worries of outside causalities!

 

[kvnchapman]

LOL. Thanks for the posts, Singledad! He's in OT, speech and early intervention (3 xs a week). I'll def ask the therapists! Thanks!

 

[Beemitchcowski]

Coming from a parent of a child with Autism which comes hand in hand with sensory issues...we are also planning a trip to disney and I've received many tips...some may or may not apply to your child:


Bring lots of snacks...snacks that are crunchy/have texture to help calm him/her down

Have him/her carry a backpack that is weighted down

Make up a picture schedule/map so your child knows what to expect next

wear ear plugs or noise reducing headphones because Disney is super super loud.


Definetly get a GAC card..just make sure you get a letter from your childs doctor.

Hope that helps.

 

[kvnchapman]

He loves his weighted vest. It definitely helps him center himself. The snacks are a great idea, too. He's still so little (turning 2 in the World) that it's a little tough. Thanks parents! Glad to know you understand! The tough thing is that he appears so typical in appearance, it's all the quirky stuff that most folks won't even notice off the bat.

 

[jimmysmom74]

SPD is difficult. My DS is 3 1/2y/o now, he was 2y/o when he was diagnosed a sensory seeker. Our last trip to WDW was a little difficult with the lines. Get a good TP and utilize FP. We got a GAC on our 2nd to last day, and I wish I would have done it sooner. He did much better in his stroller in line then walking or being held. He is a mover, so it was much easier to control him and to give him his personal space with the stroller as a wheelchair. My son is very typical most of the time too, so I understand how those behaviors can be so difficult. For us, therapy is helping so much-it does get better. Hang in there!

 

[kvnchapman]

Thanks! The option of staying in the stroller would be helpful. Do you all think our double jogger (we have twins) will fit in the lines?

 

[Singledad]

depends on the type, is it a side by side or in-line? how does it compare to a ECV in size. if EVC's can fit, a lot of strollers can too... if nothing else, if you are scared of the size of your double, maybe look into one of these types:

that one can be rented from randy's mobility
http://www.randysmobility.com/randys...er_rental.html and not only allows the second child to ride standing, but also sitting (there is a seat there.)
for another stroller rental company check out https://www.orlandostrollersrentals.com/Default.aspx (they are a disboard sponser if i remember correctly.)

 

[clanmcculloch]

oh, as for the GAC I cannot think offhand how one could help you any better than a good plan. Also, I assume that he is in OT? I would definitely ask the OT about tips on keeping him calm in lines. Maybe they can suggest some specific Heavy Work that you can do in the park (like my movement games, but tailored to your son.).

Pushing his own stroller between lines could help too. that is, if you don't panic every two seconds thinking he is about to run someone over... that is why movement games work better for me... no worries of outside causalities!

We need both a good plan and a GAC for our sensory seeker. First, the stroller as a wheelchair tag IS a type of GAC, it just gets attached to the stroller. Second, we've had bad experiences with wiggling, spinning, etc in regular lines. For us it's very helpful for waits to be in an alternate area so DD CAN move around. She needs to be able to move but if she also can't has a meltdown if she's being looked at so moving, wiggling, etc in a separate area makes a huge difference.

Yes, a good touring plan is invaluable. I'll never go back to WDW without TourGuide Mike. That being said, we do still need our GAC. The touring plans mean very short waits; the GAC allows those waits to be in quieter areas. We don't use the GAC often but we do use it.

 

[Diegosmom]

Anyone have a good website on SPD?

We have had a lot of problems with DS (will be 4 in 2 weeks) and last year at his 3 year appoinment we talked with the ped about SPD which he said we could test if I wanted. We decided to try a few other options that really did work but as I read thru all these posts I really think that my son might have SPD. But I think it would be more on the less severe side. But a year ago when I looked it seemed he had symptons of both sensory seaker and whatever the opposite it (lol don't know my terms).

We should be going to 4year Ped appointment soon (which reminds me I need to make an appointment) but I want to have my ducks in a row...

Oh FYI these are what I have noticed

Hates tags
Loves to be hugged or help really tight.
Loves belly to belly, skin to skin contact (but then often times doesnt want to be touched at all)
Noises like the vacume, hair dryer, blender etc really bother him
Always on the move (daycare teacher said she has never seen someone so active and she has been teaching 10 years)
He never wants to sleep and has a really hard time going to bed (however at school no problems with nap)
Needs a schedule (any variation causes total meltdown)
Needs to know what is going to happen in advance (or else meltdown).
And always has to move, he never sits still (but doesnt do the spinning all the time although he loves to spin and never gets dizzy)...

Anyway any advise?

 

[clanmcculloch]

Anyone have a good website on SPD?

We have had a lot of problems with DS (will be 4 in 2 weeks) and last year at his 3 year appoinment we talked with the ped about SPD which he said we could test if I wanted. We decided to try a few other options that really did work but as I read thru all these posts I really think that my son might have SPD. But I think it would be more on the less severe side. But a year ago when I looked it seemed he had symptons of both sensory seaker and whatever the opposite it (lol don't know my terms).

We should be going to 4year Ped appointment soon (which reminds me I need to make an appointment) but I want to have my ducks in a row...

Oh FYI these are what I have noticed

Hates tags
Loves to be hugged or help really tight.
Loves belly to belly, skin to skin contact (but then often times doesnt want to be touched at all)
Noises like the vacume, hair dryer, blender etc really bother him
Always on the move (daycare teacher said she has never seen someone so active and she has been teaching 10 years)
He never wants to sleep and has a really hard time going to bed (however at school no problems with nap)
Needs a schedule (any variation causes total meltdown)
Needs to know what is going to happen in advance (or else meltdown).
And always has to move, he never sits still (but doesnt do the spinning all the time although he loves to spin and never gets dizzy)...

Anyway any advise?

Take a look at the books by Carol Kranowitz. She's the author of Out-of-Sync Child. I also really liked her book Goodenoughs Get in Sync for kids.

I think you're looking for the terms sensory seeker and sensory avoider. My DD13 is also both. I had a lot of trouble early on grasping how a child can possibly be both. Basically, it's different senses or different aspects of the senses that have the different needs (to either seek or avoid).

Lets look at your list and see how these differ.

Hates tags avoiding localized constant inputs
Loves to be hugged or help really tight. seeking deep pressure inputs
Loves belly to belly, skin to skin contact (but then often times doesnt want to be touched at all) seeking deep pressure inputs
Noises like the vacume, hair dryer, blender etc really bother him avoiding auditory inputs
Always on the move (daycare teacher said she has never seen someone so active and she has been teaching 10 years) seeking deep pressure inputs
He never wants to sleep and has a really hard time going to bed (however at school no problems with nap) most likely seeking deep pressure inputs (try very heavy blankets for deep pressure input and make sure there are no vents, fans or drafts causing localized constant inputs)
Needs a schedule (any variation causes total meltdown) this isn't sensory; it's much more towards the obsessive compulsive spectrum
Needs to know what is going to happen in advance (or else meltdown). this isn't sensory; it's much more towards the obessive compulsive spectrum
And always has to move, he never sits still (but doesnt do the spinning all the time although he loves to spin and never gets dizzy)... seeking deep pressure inputs

It does sound as though he's got some sensory issues that could be interfering with his ability to function in a happy and typical way. The evaluation is certainly worthwhile. Unfortunately, there's also signs of some obsessive compulsive tendencies (NOT OCD; tendencies) which could be looked at as well. It may be that just keeping a schedule and prepping for changes is sufficient but it's best to have him evaluated now while you're getting the SPD evaluation done because if it is something more then the Occupational Therapist can work with him on that as well.

 

[Singledad]

Anyone have a good website on SPD? .....
Anyway any advise?

http://www.spdfoundation.net/ is my 'main' jumping board. the basic red flag list seemed a little.. to basic? to me. (http://www.spdfoundation.net/redflags.html) but the checklist I liked the most was here: http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

once I printed that out, and checked what fit my DD... I was like, although some of this seems to 'counter' each other, there is too much checked to ignore. and the school agreed with me (she is in 4k, and was being evaluated for other reasons. I asked for them to also evaluate for SPD).

in the end, you know your child more than anyone else, we can't tell you 'oh yeah that isn't SPD' or 'that can ONLY be SPD' we can only tell you what we think, it is you who will know.

also, be aware some of what I read sounds a lot like my DD (the schduel things and need to know) and it has been suggested she get evaluated for autism. at first I was a bit shocked but, now I am reading more about it, the more it sounds like, yup that sounds like my kid.
if you have more questions, feel free to ask us, this community seems to have a lot of good answers and advice!

 

[Diegosmom]

Wow thanks guys...I have seen checklists before and I guess I was thinking he wasnt cause he pulled off of two list (that conflicted) but there are a lot of "issues" that we deal with (and I think we are doing pretty well) but if there is a "reason" for his type of behavior and a "solution" then I would love to get this going now rather then later.

Just made his Ped appopinment so I will have him schedule him and evalutation and I will also look into obsessive compulsive tendencies, I had never heard of that.

It was funny cause for a while he could not sleep with out the fan going, finally got him out of that habit for winter but now I have been running it a little and it does seem to bother him but I was thinking it was the noise (not a quite fan lol)

I'll also pick up those books (hoping library has them).

Thanks again.

Oh and had not even thought of autisum because he doesnt seem textbook but I guess he could be high functioning (I will look into that). A year ago daycare was talking ADHD, while I am not thinking it is that I do think something is going on with my little boy.

 

[Singledad]

the trouble with ADHD, SPD and high fuctioning Autism/aspergers, is that they have what seems like a lot of overlap, and people can have all, or one, or two or none of them. just because they have SPD doesn't mean they are on the spectrum, nor does it mean they dont have ADHD. It really takes a very good evaluation to know what really is the issues and even they, they might not be 100%.. what matters more than the label is, 'what will help'. Will OT (occupational Therapy) help, or not? will medications help, or hurt or do neither? these are the bigger issues that the label(s) applied.

 

[bookwormde]

The reason they all overlap is that there are strong indications that they all come form the same evolutionary genetic grouping, it just depends what part of the grouping an individual gets (actually ADHD in not part of the group, but EF differentials (ADD) is).

It is very important to understand the individual pieces and not just slap on a label.

bookwormde

 

[jimmysmom74]

All the advice given is excellent. I just want to express how important it is to find a medical evaluation that is comprehesive, with experts in the the field of SPD. Many of these disorders are look a likes. When a MD is not very familiar with SPD, it can be misdiagnosed. And the treatment plan for each issue is much different. You are the best advocate for your child. The best eval is when several people from multi area of expertise look at your child together. Good Luck! The more you know the easy it is to understand:

The out of sync child
The sensory sensitive child
SPD Foundation-Dr Lucy Miller

Some resources for SPD, it will get easier-I promise!!!