New to Sensory Processing Disorder

[booksopenminds]

Hi! My name is Stephanie & I just joined today on the recommendation of a friend who speaks very highly of this board & all the knowledgeable mommas on here. 

I have two DDs (2 1/2 & almost 11 months/9 months adjusted). My younger DD has been in EI for 6 months for PT. Turns out that her only issue physically (besides being double jointed) was that since she would not let me put her down so she was not able to develop her body. Next week she is being eval'd by her eval team & based on phone conversations with them over the past couple weeks they are sure that she has a sensory processing disorder & will be starting with an OT soon. Her PT spoke with an OT for us since she is now ahead physically (we're just in a holding pattern waiting for OT to start) & the OT said that she will need a compression vest for sure. So, basically, I am hoping that someone can tell me what it is like to have a baby in a compression vest. Is it an everyday, all day type thing or just short periods? Do you see an immediate improvement or is it gradual? Truthfully I don't even know where to start with questions because I know so little about them- any resources that I could be pointed to would be great too (books, websites, etc.). TIA! I like to go into situations with a base of knowledge rather than be blindsided. 

[SpottedFoxx]

Welcome to the board and to the SPD family.  My OT believes that kids should not be in a compression or weighted vest for longer than 20 minute intervals.  If they are in it all day, they will get used to it and it will render it ineffective.

Don't buy an expensive compression vest.  Just get a swim shirt a size or two too small.  

Get yourself a copy of "The Out Of Sync Child" and once you've digested that get "The Out Of Sync Child Has Fun".  They are the bibles of the SPD community.

There are several wonderful SPD groups on yahoo.  I belong to http://groups.yahoo.com/group/SID-DSI_AllAboutKids/ and http://health.groups.yahoo.com/group/sensoryintegrationgroup/

There is also a great facebook page - just search sensory processing disorder on facebook and you should find it.

[Linda on the move]

I totally agree about The Out of Sync Child. This is not a book to get out of the library, but to buy.

Another book I'm really hot for is "Quirky Kids" by Klass. It talks about a range of differences including SPD and goes over evaluations, specialist, phases of a child's life, etc. Nice book, very warm and fuzzy.

I believe that I'm the mom on this board with the oldest child with sensory issues. My DD just started high school and she's doing great! (She has some other issues besides sensory issues).

<<I like to go into situations with a base of knowledge rather than be blindsided. >>

Raising a kid with issues is different from raising a regular kid, but its OK. You will be OK, and she'll be OK (OK might look different that you thought it did). But, your desire to have a base of knowledge about what is going to happen might be an area of personal growth for you over the next few years. Raising a special needs child is making peace with the unknown. Over and over.

There are great books to read things you can learn from talking to others. I'm all for that. But at the end of all the research, and even the evaluations, no body can tell you what will happen next for your child.

Sorry:Hug

[raksmama]

Good thing your kids got the diagnose so young! There is so much that can be done!

Yes, out of Sync Child is still the best book out there IMO aside from the creepy cover (anyone else  think so too?)

 My son is 13 and was diagnosed with moderate to severe Sensory Processing Disorder when he was 7.

He has come a long way! Now his tactile sensitivity is really mild and it is mainly his fine motor skills that are still below age level because of the SPD in his vestibular system.

[Linda on the move]

Originally Posted by jalilah 

it is mainly his fine motor skills that are still below age level because of the SPD in his vestibular system.

how are they related?

My DD has vestibular system issues and fine motor issues, but I didn't know there was a link.

(side note -- over the years swimming on a swim team was a great thing for her sensory issues, and it was a regular kid activity. She loved being on a team, having the same suit as every body else, etc., and the practices were like intensive therapy for her. It's nice when you can turn therapy into something with ribbons and trophies!)

[Peony]

Originally Posted by Linda on the move 



(side note -- over the years swimming on a swim team was a great thing for her sensory issues, and it was a regular kid activity. She loved being on a team, having the same suit as every body else, etc., and the practices were like intensive therapy for her. It's nice when you can turn therapy into something with ribbons and trophies!)

We had the very same experience! We were able to stop OT because of swim team, swimming was wonderful therapy. DD1 had trouble with fine motor skills but gross motor were always good. I'm spacing the term but she never got dizziness, during evals or therapy they would spin her around and around and her eyes would stay straight instead of moving back and forth. It worked to her advantage for some activities. Gymnastics for her, was another one that was perfect. She started taking the little kid class at a rec center, eventually learning to balance on a beam, and working up slowly. She loved it and worked really hard on her skills. It didn't come easy, she has had to really work at it, but she was always convinced she could. It's been 5 years now and now she is training for the competitive team. Never thought that would be possible. 
 

[booksopenminds]

Thank you everyone!! I appreciate it so much! I downloaded the book & it is really great. I thought that I was just reading it to understand my younger daughter but now it looks like my older daughter shows a lot of signs too. It is weird- I'm not sure if her behavior is typical 2 year old or SPD. I will speak with my younger daughter's eval team on Tues about it. Both of my daughters were premature & my first was IUGR. I was surprised to read that SPD is often found in both of these groups. 

[raksmama]

 Oh absolutely there is a link between the vestibular system and motor skills in general, not just find motor skills! It is mentioned in the Out of Sync Child in the chapter “How to Tell if your Child has a Problem in the Vestibular sense” I think.

In any case they, the senses are all tied together. I remember my son’s OT telling me that when children are oversensitive in tactile system they often miss out on activities that develop motor skills. For instance when my son was little at the playground he did not want to touch the sand with his hands or climb up on the play structure. He would just play with his trucks or go around talking to all the parents.

He was my first and only so I could not compare, but I was concerned. At the same time all the parents kept telling me “wow your son has such an amazing vocabulary for his age!” so I just thought that he must be quirky. I did not find out what was happening until a few years later when he was diagnosed.    

Originally Posted by Linda on the move 


how are they related?
My DD has vestibular system issues and fine motor issues, but I didn't know there was a link.
(side note -- over the years swimming on a swim team was a great thing for her sensory issues, and it was a regular kid activity. She loved being on a team, having the same suit as every body else, etc., and the practices were like intensive therapy for her. It's nice when you can turn therapy into something with ribbons and trophies!)

[Marla Fisch]

Hi there!

From one sensational momma to another, by far the absolute best and up to date research and information can be found on the website;  www.SPDFoundation.net.  For tons of great resources and books go to Sensory World.  You will be surprised how much information there is out there now.  There are online webinars you can attend, books to read, and lots of help out there for your child with sensory challenges.  Let me know if this helps you.

Its a journey, but I promise there is a light at the end of the tunnel.

~Marla Roth-Fisch

award winning author/illustrator Sensitive Sam

VP external board of directors SPD Foundation

[deminc]

Originally Posted by Peony 

We had the very same experience! We were able to stop OT because of swim team, swimming was wonderful therapy. DD1 had trouble with fine motor skills but gross motor were always good. I'm spacing the term but she never got dizziness, during evals or therapy they would spin her around and around and her eyes would stay straight instead of moving back and forth. It worked to her advantage for some activities. Gymnastics for her, was another one that was perfect. She started taking the little kid class at a rec center, eventually learning to balance on a beam, and working up slowly. She loved it and worked really hard on her skills. It didn't come easy, she has had to really work at it, but she was always convinced she could. It's been 5 years now and now she is training for the competitive team. Never thought that would be possible. 
 

 Yes! This! Our combination was gym, TKD and swimming. During the evaluation he did better on the balancing pole than on the ground, LOL. Nothing came easy, his gross motor planning was poor, his core was weak and his body was unbalanced. but as Linda_on_the_move said, it was normal kid stuff, with socialising thrown in and it was waaaayy cheaper than private intensive therapy. Because of the activities, we could cut back on therapy over the long term and simply go back for reviews and some tweaking. TKD was the area that he worked really hard at and he actually made it to black belt. Peony, you said it - never thought that would be possible!! 

For fine motor, starting on piano has been helpful for strengthening ds's fingers and the general wiring up between the senses. I cannot rule out future therapy specifically for handwriting, but it has at least helped him to just about keep up with school demands at this point.