Sensory Processing Disorder

Lounge By lecrn Updated 3 Nov 2010 , 12:26pm by lecrn

lecrn Posted 21 Oct 2010 , 10:06pm
post #1 of 19

That's the diagnosis that my 21 month old son received today. I had never heard of this before until today. I had voiced my concerns that my son wasn't talking @ his 18 month check-up, but the doc said to "wait and see" until he returns for his 2yr check-up. He has been babbling for a very long time, but hasn't made any progress in the speech department.
Yesterday, we went to the doc to have stitches removed, and I mentioned the lack of speech again. I guess he could tell that I was very concerned, so he referred us to a dev. specialist. We went to the specialist today. We also mentioned that he has been walking on his tiptoes some & waves his arms when excited. My greatest fear was autism, but she said that he didn't show any symptoms of such. She referred us to OT and speech therapy, and thinks this will catch him up to his peers.
Sorry to post this here, but I just need to talk to someone that has gone through this with their child, and ask if therapy has helped. They gave me some reading material on the subject, and I've searched the internet (which doesn't have that much info). I'm writing this in tears @ the moment b/c I'm so frustrated! I'm also about 5 months pregnant with our 2nd child, & I can't even be excited.
Thanks for listening!

18 replies
Elcee Posted 21 Oct 2010 , 11:08pm
post #2 of 19

lecrn,I don't know anything about your son's diagnosis but I wanted to jump in here and tell you to contact your school district's Special Programs department. (could also be Special Education, Exceptional Student Services) They should have a process set up for children as young as yours to receive services. He could qualify for early preschool or special education services like speech therapy and OT provided by their staff. They will also be able to get you started with lots of services.

I do hope this information helps, if even a little. You and your family will be in my thoughts.

lecrn Posted 21 Oct 2010 , 11:31pm
post #3 of 19
Quote:
Originally Posted by Elcee

lecrn,I don't know anything about your son's diagnosis but I wanted to jump in here and tell you to contact your school district's Special Programs department. (could also be Special Education, Exceptional Student Services) They should have a process set up for children as young as yours to receive services. He could qualify for early preschool or special education services like speech therapy and OT provided by their staff. They will also be able to get you started with lots of services.

I do hope this information helps, if even a little. You and your family will be in my thoughts.




Thank you! Each state has an Early Intervention System which caters to children under the age of 3. I've called them to set up an evaluation to see if we qualify for assistance with the payment of his treatments.

funcakes Posted 22 Oct 2010 , 8:15pm
post #4 of 19

I think that you should read the reports from the testing and see if he qualifies under Pervasive Developmental Disorder. This is a diagnosis that covers many different delays seen in very young children. From what I know this disability is much, much better funded, and your little one may be able to get more help for free. It is under the spectrum of autism, but does not indicate some of the more severe symptoms.
JMHO!

BTW there are countless fundraisers, saw one last night, for autism. When did you see one for SPD?

CakesByJen2 Posted 23 Oct 2010 , 1:10am
post #5 of 19

My son was in the early intervention program from about 4 months until 3 years. Initially he was referred for physical therapy for torticollis (the muscles on one side of his neck didn't develop properly causing him to tilt his head), but his initial assessment also tested him as having sensory issues, and he was also referred to OT. I never believed he really had sensory issues, and the OT quickly agreed with me after a couple of sessions. He simply didn't cooperate with the test, so he tested that way.

At 18 months, they did another re-assessment, and again he *tested* as qualifying for OT, even though none of us on his team felt he needed it. Again, it was just his personality quirks that made him appear that way on the assessment.

He did have a severe speech delay. He actually never babbled, just skipped that stage, which made it very difficult for him to figure out how to form words later. He understood everything, just couldn't get the words from his brain to his mouth. At 2 years, he only said a few words, and not very clearly. Then all of a sudden at 2 yrs 4 months he started adding new words left and right, though still had articulation problems. He is almost 8 now, and the kid *never* shuts up! And I mean never! No one can believe he had a severe delay. He still gets speech therapy, mostly for his "r"s, but he will probably be discharged soon.

So, all that is to say not to get too freaked out by a daignosis based on behavioral assesment, as opposed to something that has a specific medical test. Their personality and mood can really affect the results. But, if there is a problem, the early intervention programs are wonderful! My son didn't like PT all the time, but he LOVED his OT & speech therapy. It was like playtime to him.

lecrn Posted 23 Oct 2010 , 5:04pm
post #6 of 19

Thanks so much Jen, for your story! That really gives me some hope. We start OT next week, and then speech the 1st wk of Nov. I think that I'll feel better to having another opinions after they have seen him several times.

Ruth0209 Posted 27 Oct 2010 , 1:53am
post #7 of 19

My daughter was diagnosed at a young age with a central processing disorder. I don't know if that's the same as a sensory processing disorder, but she had a lot of O/T when she was young. It's hard to say how much it helped because she was born hearing impaired and with mental retardation. She had so many therapies and so much intervention that it was hard to tell what caused what, and what helped what.

The bottom line, though, is that early intervention is a VERY good thing. I know it must feel like the worst thing that's ever happened and that there might not be any way to fix it, but there are lots of things you'll be able to do to help him.

I was really sad and afraid when I first learned of my daughter's disabilities, but I can tell you that you absolutely have what it will take to help your son maximize all of his potential. Learn everything you can about this disorder, work hard at all the O/T exercises he needs to do, and trust your instincts. Be open to trying things people suggest, but if it's not working after a good try or if it's just too much, be confident enough to say NO. You'll learn to be a very brave and determined. Always remember that you are your son's best advocate. It's your job to get him what he needs, as diplomatically as possible, but don't be intimidated by teachers and others who will try to tell you they don't have the money for it (and they will tell you that). Most important right now, remember that you only have to figure out what needs to happen tomorrow. Try not to torture yourself with all those "what if" questions. Most of them never happen.

He may only need some intensive work to get him caught up and then he'll be fine, or he may have some deficit that he'll have to learn how to manage.

My daughter will be 29 years old on Friday. It's been quite a ride with her - the kind of mothering experience I never would have bargained for! But she's done more and gone farther than anyone ever predicted because I never assumed she couldn't do anything.

It's okay to grieve and cry and worry a bit. It's a blow to learn that your child has something going on that's going to be a challenge for him. But then, make it the most important project of your life (like he already is!). It'll work itself out.

Your state should have a Parent Education Center that may have information for you on the disorder and maybe even some parent support groups. The groups I attended probably saved my sanity. It was a godsend to talk to other parents experiencing the same thing. Your state's department of health and welfare (or whatever it's called in your state) should have social workers who can help you find the services you need (although it helps to find out what you need and ask for it because some of them won't offer services you don't request). Don't be too proud to take whatever services are offered to you.

My heart goes out to you. I've been there. But trust me, you and your son really will be okay. All the best of luck to you! Hugs.

redpanda Posted 27 Oct 2010 , 4:20am
post #8 of 19

My 17 year old son was diagnosed with Sensory Processing Disorder (actually back then it was called Sensory Integration Disorder) when he was in first grade. He was very sensitive to noise, to the degree that the doorbell, blender, or vacuum cleaner would have him in hysterics. On the other hand, we was very insensitive/seeking for some types of motion/deep pressure. After doing Sensory Integration therapy for a year, he was able to enjoy things like fireworks shows and even the Lion King stage show, which was loud even for me.

Carol Stock Kranowitz has written some good books, including The Out of Sync Child and The Out of Sync Child Has Fun.

lecrn Posted 27 Oct 2010 , 6:51pm
post #9 of 19

Thank you all so much! We've had our OT evaluation & Early Intervention evaluation. I don't know if we'll qualify for Early Intervention benefits (which is positive in a way). It would help a lot to have that benefit, but I totally understand that there are children that may qualify based on degree of disability &/or income. We'll have a longer evaluation from Early intervention that will approve/disprove help from the state.
I'm not totally convinced that he has a Sensory Perception Disorder, but I'm certainly not an expert. I'll be more convinced when OT starts working with him and can give me their opinion.

Walls1971 Posted 27 Oct 2010 , 7:20pm
post #10 of 19

Just wanted to send hugs your way. . . I just went through a lot of what you're going through with my son. I second "The Out of Sync Child". Just the introduction had me in tears because I FINALLY recognized what was going on with him. It will help you with techniques on how to handles his special needs. We've finish speech therapy and physical therapy and he's come so far! We still may have some speech therapy in our future, but for now he's a social, active 5 year old. Good luck!

Rachie204 Posted 28 Oct 2010 , 1:35pm
post #11 of 19

well i don't know anything about that disorder but I do know that all children progress at their own speed. My children have both talked very early and we have a friend with four children who all begin speaking around 3 years of age just like their father did and all are totally normal. My nephew is 17months and seems to be right where your son is right now and his doctor hasn't showed any concern. That being said I think you are doing the right thing preparing yourself and trying to get educated about the matter. Best wishes!

leily Posted 28 Oct 2010 , 6:14pm
post #12 of 19

I just wanted to say thank you for posting this although i'm sure it was hard to do. My 20 month old daughter does many of the same things that you said your son did. She is saying some words, but very few compared to others her age we've met.

She was a preemie so we qualified already for a program through our states AEA program. So we do meet with someone monthly about her progress. i brought some of these things up and she will be seen for the next few months bi-weekly instead of monthly now. Not sure if she has it or if she is just being a stubborn child on some of the things, but I just feel better knowing that my daughter isn't the only one going through it. We'll be keeping a better eye on how she reacts to things so we can see if she falls under this diagnosis.

Hang in there, i know it's not easy, but at least you've been able to put a label on it and know that you and your son can do things to change it. And you caught it early!

lecrn Posted 28 Oct 2010 , 9:48pm
post #13 of 19
Quote:
Originally Posted by leily

I just wanted to say thank you for posting this although i'm sure it was hard to do. My 20 month old daughter does many of the same things that you said your son did. She is saying some words, but very few compared to others her age we've met.

She was a preemie so we qualified already for a program through our states AEA program. So we do meet with someone monthly about her progress. i brought some of these things up and she will be seen for the next few months bi-weekly instead of monthly now. Not sure if she has it or if she is just being a stubborn child on some of the things, but I just feel better knowing that my daughter isn't the only one going through it. We'll be keeping a better eye on how she reacts to things so we can see if she falls under this diagnosis.

Hang in there, i know it's not easy, but at least you've been able to put a label on it and know that you and your son can do things to change it. And you caught it early!




Thanks so much, but I'm not so sure about the brave part! I know that it's not wise to compare to other kids, but I do it all the time (esp being a 1st time mother). My child may be normal and just stubborn as well? He's been very laid back about doing a lot of things, but has always shown progress. He's never wanted for anything, & we've anticipated his every need. This may be part of the problem? I've heard stories as well of "normal" kids not talking until age 3. My DH said that he walked on his toes as a child, & didn't totally stop until around 6 yrs with a lot of prompting. The OT said that this could be normal when learning to walk (he started @ 17months). I think that it would be difficult to get a definite diagnosis when they're so young.
Good luck with your little one as well. Maybe we can say a few prayers for each other.

Texas_Rose Posted 28 Oct 2010 , 9:53pm
post #14 of 19

We couldn't understand anything my oldest said until she was three. Even then, it was less than half of what she said that we could figure out. A friend online said to take away the sippy cups with the valve, and within a month we could understand at least 3/4 of what she was saying. She's in 3rd grade now and getting A's and B's, so her speech delay wasn't an indication of any learning delays.

My younger one was talking in complete sentences when she was one. It really does just vary by child...you can't tell what's normal by comparing your kids to other kids. Normal is whatever your kid does icon_biggrin.gif

lecrn Posted 29 Oct 2010 , 12:10am
post #15 of 19
Quote:
Originally Posted by Texas_Rose

We couldn't understand anything my oldest said until she was three. Even then, it was less than half of what she said that we could figure out. A friend online said to take away the sippy cups with the valve, and within a month we could understand at least 3/4 of what she was saying. She's in 3rd grade now and getting A's and B's, so her speech delay wasn't an indication of any learning delays.

My younger one was talking in complete sentences when she was one. It really does just vary by child...you can't tell what's normal by comparing your kids to other kids. Normal is whatever your kid does icon_biggrin.gif




That's interesting about the sippy cups. I actually took the valves out of his cups last week b/c he had stitches in his bottom lip (and left them out). He still uses the take & toss cups for milk which has to be sucked on a little to get anything out.

BakingGirl Posted 2 Nov 2010 , 11:17pm
post #16 of 19

My son was diagnosed with sensory processing disorder when he was 4, he is now 6. It was such a revelation to get the diagnosis, a lot of things suddenly made sense to us. He used to get absolutely hysterical about tags in clothes, had to cut out every tag there was, yet he would not notice his shoes being on the wrong foot. He really struggled with transitions in the day, so school was very hard for him. He got into an early intervention program and we also followed up after that with treatment at the Star Centre in Denver, Colorado. We live on a small island so our resources are very limited here, so a place like the Star Center was a godsend for us.

My son is doing very well now. In fact I was laughing to myself the other day, he was running around the house in his Halloween costume, complete with the biggest scratchiest tag you have ever seen - and it did not bother him one bit. He is also doing much better in school. We have worked very closely with the school to adapt the classroom to his needs, they have been very good about it. He is still having issues with reading so we are just going through a new full evaluation which covers all aspects of learning disabilities and social disabilities. I am a bit worried that in addition to the Dyspraxia he suffers from he also has has Dyslexia. We have not had the results of the evaluation yet so I guess we will know soon enough. Our son is much better adjusted now and much happier than he was, but it is a work in progress and things take time and patience.

I just wanted to let you know that there is hope. The process can sometimes be long, confusing and upsetting, and often expensive - but in the end of the day when you see the benefits of the treatment and a happy child, then it is all worth it!

lecrn Posted 3 Nov 2010 , 12:11am
post #17 of 19

Thank you so much BakingGirl! It helps so much to hear stories like yours! I can sleep better knowing that there is hope for improvement with treatment.

BakingGirl Posted 3 Nov 2010 , 4:14am
post #18 of 19

Sensory Processing Disorder is a lot more common than what people realize, a lot of "bad behaviour" and ADD/ADHD type behaviour is often mis-diagnosed SPD. The really great thing is that the brain in such young kids, and yours is really young, is so plastic that you can achieve a lot with the right intervention. So my advice to you is to do as much as you can now, obviously without stressing your child, because so much is achievable at this stage. Good luck, and if you have any questions please feel free to PM me.

lecrn Posted 3 Nov 2010 , 12:26pm
post #19 of 19
Quote:
Originally Posted by BakingGirl

Sensory Processing Disorder is a lot more common than what people realize, a lot of "bad behaviour" and ADD/ADHD type behaviour is often mis-diagnosed SPD. The really great thing is that the brain in such young kids, and yours is really young, is so plastic that you can achieve a lot with the right intervention. So my advice to you is to do as much as you can now, obviously without stressing your child, because so much is achievable at this stage. Good luck, and if you have any questions please feel free to PM me.




Thank you! That really means a lot!

Quote by @%username% on %date%

%body%