First Time Mom - Abington,PA

Updated on May 30, 2009
J. asks from Abington, PA
6 answers

Hey, Everyone

I wanted to ask anyone out there if you have a child with sensory disorder aand how they are doing.
My son is being helped by early intervention and we be up when he turns three. I personally im very confused about everything because to me he is like acting just like a two would act. I mean he has meltdowns and is a picky eater, but other then that i dont see anything. Just want some input about anybody who has a child with sensory disorder and had no problem in school.

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A.M.

answers from Pittsburgh on

J.,

My 4.5 year old daughter has SPD with PDD. It took a long time to get her diagnosed. She was 3.5 when she started therapy. At the age of 2, I thought there were problems but my then-pediatrician discouraged me from getting her tested and that was a huge mistake. By the age of 3.5, her symptoms were much worse. (Her "normal" meltdowns had progressed to include hurting herself. Self-injury is one of the most agonizing things you will deal with as a mother.) Had we started earlier, like you have, she would be that much farther ahead.

Sensory Processing Disorder affects almost every part of a child's life. You will find that SPD cannot be cured. A child does not grow out of SPD, they grow into SPD. You and your son will learn ways to cope with SPD.

If your son is in EI, you should ask your caseworker for information on qualifying for MA (if you are in PA). Medical Assistance is the only way to pay for therapy once your child turns 3. You will get some assistance from the IU, but they are very limited in their services. Your son may need speech therapy and will need occupational therapy. The IU can provide both but you will only get one session once a week during the school year and the IU therapists cannot address SPD, their job is to work on school skills.

My daughter goes to OT at CHP once a week, she has private speech therapy twice a week, she has six hours of social skills services. She also has 4 hours of BSC and 19 hours of TSS. (BSC and TSS are behavioral services. The TSS goes to preschool with her and works 1-1 with her.) All of these are provided throught the State but you must have MA. The MA application process takes about 5 months and the other testing and meetings take about another 5 months so it is best to get started before you need the services.

My daughter has made a lot of progress but she still has a long way to go. She went to a "regular" preschool but she needed her services to make it through. We really do not know what she will be like once she gets to kindergarten, she may have to wait an extra year (she qualifies in 2010). Our best guess and hope is that she will be functioning at grade level by the end of 4th-5th grade but we really do not know.

Many SPD children function very well in regular classrooms. Some SPD children go on to lead very normal lives, it just depends on the child. Many children as affected as my daughter have a great prognosis. But really, all you can do is learn as much as you can about SPD, get the services you need, work with your son. (I put in a lot of work with my daughter. If your therapists are not giving you homework, you should ask for it. I also have two sensory rooms in my home - one active and one passive, for my daughter.) The more you put into the system, the more you will get out of it. You have to educate yourself so you can advocate for your son.

In addition to the books listed by other posts, I would highly recommend The Everything Parents Guide to Sensory Integration Disorder. It is an excellent beginners resource, even better than the "bible" of SPD, the Out of Sync Child. I would also receommend the Out of Sync Child has fun. It has great sensory activities for children.

If you would like to talk further, please send me a private maessage. The diganosis phase is always so diificult to get through. (I had the added worry of having a very ill 2 year old son. He needs a kidney transplant. Having two children with very special needs puts all of your life into perspective.)

Good luck.

2 moms found this helpful
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J.M.

answers from Allentown on

I think it's wonderful that your son is in early intervention- that is key to getting on the right track...and staying there. Obviously at some point you or someone was concerned enough to have him evaluated for EI & he qualified so he needs the services. It may be that he is making great progress & that is great! What will happen once he turns three is that it will be determined if he still qualifies & then receive it through the Intermediate Unit. Sometimes as a parent, especially a first timer, it might be hard to accept but just remember you are doing what is best! Good luck to you!

A.J.

answers from Williamsport on

Girl, you said it yourself! You don't FEEL anything is wrong with him! You're his mom. You're right. Meltdowns and picky eating are normal and a matter of training and discipline to solve, especially at two! They are not signs of disorders. 100% of kids would be diagnosed with this if that were the case.

If your son had real medical problems processing things you would know it.

Do NOT let anyone steer you down that road that something is "wrong" with your child if you know there isn't. This can lead to your child having low self esteem by being told he needs special treatment for disorders he doesn't have, and you'll never take charge of his structure properly if you think you're up against a "mystery illness".

Why the early intervention if you don't understand clearly that something is wrong? Don't be confused! Get the early intervention out of there and raise your son to be a good well disciplined boy! Make sure dad steps up to the plate. Dad is the main role model for boys.

If you step up the discipline, structure, good eating, sleep, exercise, love and attention, and in 6 months, he is in even worse shape, then you ca consider some tests by an expert before coming to any medical conclusions. Good luck, I hope your son is healthy and flourishes.

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L.M.

answers from Pittsburgh on

I think Annette has given you a wealth of excellent information. Early Intervention has good standards for judging whether a child needs their services -- they wouldn't be in your home if they didn't see that your child wouldn't benefit from their attention. I know I can become habituated to my little son's behaviors and skill levels and forget, until I see other children the same age, that he is indeed different and in need of more help than I can give him. We get worn down, too, by the tantrums and whatnot and might not be the best judges of what's age-appropriate. Anyway, after Early Intervention at age 3 my son went on to an Intermediate Unit classroom that's called "DART" in Allegheny County (ages 3 - 5), where, again, the personnel are well qualified to assess and aid the children. The EI people should help you make the transition to similar classrooms in your county. Once you have a Medical Assistance card you can look into private Occupational Therapy hours that would be covered by insurance in Pennsylvania. Best of luck to you! All the time and effort you put in is worth it.

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D.P.

answers from Pittsburgh on

HI J.,
It's great that your son is getting early intervention for his sensory disorder--there are many different types. Please take the time to educate yourself about his disorder. Don't be afraid to ask any & all questions that you may have. That is what those people are there for!
You might want to check out this website and do some reading:

http://www.sensory-processing-disorder.com/

I'm sure you will see to it that you son gets all of the help he needs. Hang in there. God Bless.

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