Sensory Processing Disorder - Buford,GA

Updated on September 28, 2010
M.F. asks from Buford, GA
13 answers

Hi moms! I am hoping some of you might be able to help me on this. My dd is 3 and has had issues since she was 6mo. All ear infections and 4 sets of tubes. Because of the ear problems, she has had a severe speech delay and is also behind in her understanding of it. She has been with Babies Can't wait since she was 18 mo for speech therapy. Last year we put her in a pre school 2 days a week and they put her with the younger kids (6 mo or more younger) and she seemed to be moving along with them developmentally. This year she is in a Head Start program with the county and is not doing well. We just had another evaluation and she is well below the lowest average percent in gross motor, fine motor, speech, cognitive, self help, language, and social. Which we knew obviously the speech, language and social were issues. We were stunned with the rest. They also said she has a Sensory Processing Disorder. Broken down she has proprioceptive dysfunction (under responsive). I am wondering if any of you moms have had to deal with this with your child? I have read up on it, but don't fully understand yet. Is this something she will have all her life? How is this really going to affect her when she starts school, gets older? Any help, advice would be greatly appreciated. We go back to get the "offical" results of the evaluation next week, but I just can't wait that long to try and understand this. Thanks :)

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G.K.

answers from Atlanta on

Hi M.,

My daughter also has SPD. Occupational therapy is great for addressing all types of sensory issues. Whoever did the evaluation will probably recommend this. There is a great book called The Out-of-Sync Child that explains it very well. It's written by Carol Stock Kranowitz. She has also written a companion book called The Out-of-Sinc Child Has Fun that includes lots of activities that will help the child depending on the issues.

Good luck!
G.

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C.H.

answers from Atlanta on

This can be so stressful, esp in he beginning, when you're trying to sort it all out! If possible, I highly recommend you find an occupational therapist in your area. If you have insurance that will cover OT for your child, that would be the starting point. Find an OT who is trained to work on sensory issues.

You mentioned a speech delay, so I would also locate a good speech-language pathologist in your area. Your child may be eligible to receive OT and ST thru the school system. However, in my experience the school's don't provide the most aggressive therapies.

The Out of Sync Child, by Ayers, is an excellent book on sensory integration issues. I know it can be so overwhelming at first. Finding really good therapists to guide you will help so much. Best of luck!

1 mom found this helpful
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J.S.

answers from Atlanta on

Hi M.,
I have a son (9) who was diagnosed with a variety of related issues, also with severe SI, and my younger daughter had massive speech delay. With much work, education, and science of the brave physicians in this country, my son is 85% recovered (hallalujah!) and my daughters speech and sensory processing is beautiful.
If you do not heal the problem, their problems will change, but remain throughout life. They may become less severe and demonstrate differently. HOWEVER ----- that does not have to be the outcome. Treatment in the Autism spectrum area (which is where you are from a root cause perspective) has moved light years in the last 10 years due to the unfortunate massive increase in the number of kids.
Diagnosis is not the story - it is simply a beginning chapter. As you will learn as you begin her recovery, the first chapter began long ago, with immune damage. With healing comes change to the digestive and nervous systems - which change the strange and difficult behaviors.
Two things to do -
1) Read two books - cover to cover, even if you get so overwhelmed you cannot stand it. Children with Starving Brains, Jaq. McCandless, MD and Healing the childhood epidemics, Kenneth Bock, MD. You can add to it (if you are brave) Changing the course of Autism. This is the basis by which you will begin her recovery.
2) Scour the websites for treatment options of www.generationrescue.com and www.talkaboutcuringautism.com. These are optional, but helpful.
3) Consider taking her gluten and casein free(GFCF) for two months prior to booking an appointment with a medical specialist.
4) Contact one of the lead therapists (they are all terrific) at www.floortimeatlanta.com for both floortime and for occupational therapy. The group combine these therapies in a powerful way. This is only for therapy, they are not trained in nor will lead you on the medical side.
5) Give me a ring for referral, or find a DAN! physician that is referred to you. Don't call one that you do not have a reference. You need a great doctor, and they are out there.

I know where you are. I remember the lost feeling. Take a deep breath and know that you are surrounded with other parents who understand where you are. Also, take comfort in the fact there is improvement and recovery for our kids. My son and god-daughter are living proof of recovery.
With thoughts and prayers for your strength, J.

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J.A.

answers from Florence on

I remember speaking to you several months ago about my own concerns with my child, so I would like to offer some advice to you. First, who did the evaluation? Was it someone your child trusts and is comfortable with? or is it someone who is with your child frequently and can track her progress from day to day? I am asking this because I now teach 4k and the many of them just turned 4 and all the children are all on different levels in all areas. I know that the dial3 was used to assess in the same areas that you have posted and they did not know the assessor which led to many kids shutting down during the assessment process. It is easier to accurately assess a child if the person who is assessing has frequent contact with the child and can monitor daily progress. When I spoke to you before, you seemed pleased with the progress. Did you have concerns with your child before the eval?

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N.K.

answers from Atlanta on

HI- I have a son with sensory processing disorder. He was fine with speech and so forth- but his fine motor was and still is a little delayed- the best thing you can do is get her evaluated and treated by a occupational therapist - you can get it done by childrens health care or through another private funded organization- the sooner the better- I feel like we waited too long- and now m y son is super sensitive about himself and knows something is "off" even though most would not notice...you may also want to look into going gluten and casien free- do it for 2-3 months and see if you notice a difference- we did it a while back with my son and he was like a new person- it's really hard when you are used ot eating a certain way- but I think well worth the change when you see the results- good luck and feel free to contact if you have more questions, I have a lot of resources.
Nikki
mom of 3 boys

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E.G.

answers from Atlanta on

M.,

Whew, you got it coming and going, didn't you??

Okay, first of all, since your daughter is still so young, and you are intervening as early as you are, she stands an excellent chance of catching up to her classmates before not too long. So, she has a couple of challenges now, but these are NOT insurmountable.

There are dozens of moms on this board who will serve as excellent support for you. While I know you have been thrown a bunch of information at you recently, taken one at a time really is not so scary. Maybe dumping this all on you at one time was a little overwhelming. I know it would be for me.

My nearly six-year old daughter Mia did about four months with Babies Can't Wait. She too had a speech delay (receptive and expressive language skills). She also had some quirky ways of soliciting friendship from other young children. I thought this would be an ongoing problem with her. It is not.

Mia is in Kindergarten. She is doing quite well. Yeah, she had a couple of challenges to overcome when she was 3, 4 and close to 5. But she had excellent support. And now Mia is your typical silly, little tomboy who just LOVES to wear dresses.

Keep your head up here M.. You've come to the right place for support. I think your daughter will be just fine. It may take a little work. But the things she is dealing with, along with the appropriate teachers, will eventually be overcome.

All my best!!!

E.

P.S. Depending on where you live (I am not sure if it is in Cherokee County), I would send my children to Jennifer Fowler and Wendy Stevens at Hickory Flat Elementary School. They have a special-needs preschool there. Jennifer works MIRACLES. Check her out.)

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M.N.

answers from Atlanta on

I used to teach a special needs preschool class, and a number of my students had Sensory Processing Disorders or Sensory Integration Dysfunction.

I would also strongly advise you to purchase "The Out-of-Sync Child". This is a very helpful book.

I don't know if it ever technically goes away or not, but I do know that with good therapy, your daughter can be taught coping mechanisms and overcome the bigger stumbling blocks so that it doesn't have a negative impact on her life.

Best of luck to you!!

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S.F.

answers from Atlanta on

My son is 12 and was diagnosed with SPD when he was 10. Based on what you describe, I don't think his mobility issues are as severe as your daughters, but I can give you some things that are going to be challenging as she grows. By letting you know about these things, I'm hopeful that you will have some extra patience with your child - I know I would have loved to have had a "heads up".
1. School is always going to be a challenge. We have a really good public school system and they have specialists that work with us, but it's still public school. They will want to test her for half a year before they are allowed to catagorize a child as having extra classroom needs. I would recommend getting started as soon as possible reading the state mandates and policies on special educatiion in your area. The positive thing that I will report is that "special education" isn't the same as it was when I was in school. At that time, Special Ed was only for the most severe cases and everyone else was left to fend for themselves. Kids with less severe needs are covered under a more broad definition of Special Ed these days. Someone told me that half the kids in public school get some sort of Special Education services now. We had him in private school, which was also good, but they had no one who specializes in SPD (or any special needs, for that matter), so we thought public school would be better. Another challenge as he gets older is that he doesn't want to stand out among his peers. For example, he would have a better Language Arts paper if he typed it, but he won't use the laptop in the classroom because he doesn't want to be different.
Some other specific challenges include -
* handwriting/penmanship (this is what got us the diagnosis to start with - he's very intelligent and reads well, but his written work was not reflective of his thoughts.) Cursive writing may be easier for her. Schools don't teach cursive writing any more, though, so you will have to take this on yourself.
* organization - messiness seems to follow him everywhere. Papers constantly misplaced or wadded up in the bottom of a bookbag or in a desk.
* cleanliness - this gets especially frustrating as they get older. For my son, it's around eating. I still have to tell him when he has something on his face and to go wash his face/hands. I'm not talking a little bit of stuff in the corners of his mouth, but clothes that are all messy (I used to make him take his shirt off before we ate), and food on his face. It is not unusual for me to tell him to go and wash the sauce off his forehead. (I have no idea how it gets there.) Given a choice, he would not use a utensil. (I do insist on it, though).
* socially - It's very sad to report that my son has never had a good friend. Ever. He has his brother, cousins and is friendly with people, but he has no intrest in having kids over to spend the night and rarely goes over to anyone's house. He seems fine with it. We've spent time getting him involved in sports that foster teamwork, but are single person sports (swimming, karate). Both Soccer and Football were disasters.
Finally, with my son, I explain everything that I can about SPD in an age appropriate manner. He knows he has some challenges that not everyone has, but he is a smart boy and will be able to figure out how to overcome these challenges. He understands that everyone has a challenge of some sort that they have to overcome, too. I hope this is helpful.

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S.P.

answers from Atlanta on

The best news is you caught it when she was young and started therapy early. Early intervention is so critical.

My son was diagnosed with Sensory Processing Disorder, but I guess it's the same thing. He had problems with gross/fine motor skills as well as problems understanding language. He wasn't very delayed, but enough to require intervention.

Speech and occupational therapy really was key with him, and we didn't start early like you are, because he was older when he was diagnosed. He's 9 now and has made great progress. If you just met him you really wouldn't know he had issues when he was younger. His handwriting is still not a thing of beauty, probably never will be. And he still has clothing issues, but nothing that's major, that we can't ignore.

What we did discover over the course of his various therapies is sometimes it takes a change of therapist to jump start things. Just like different teachers connect differently with pupils, same thing with therapists. And the therapy we were provided with via the county school system was abysmal. It took private (and expensive) therapy to make the difference he needed.

My other son suffered with ear infections, and tubes, so I know that road as well. His speech was also affected. Speech therapy did WONDERS for him as well. Also, as he got older the infections lessened, which helped too.

Good luck, you're doing a great job working on things early!

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D.P.

answers from Atlanta on

My sister-in-law in NJ has a child with Sensory Perception Disorder (or something like that) which sounds like it may be similar or the same as your child's diagnosis. In NJ, they have a system where they send two different people to her house each once a week. (one for speech and one for processing/play therapy/occupational therapy) I don't know if GA has a similar program.

Her son has improved tremendously since he's begun the therapy! As I understand, it never goes away -- but depending on the severity of the disorder with the child, he/she may go on to live a normal life. It is in the autism spectrum but is not autism. I would go to the library for info. The internet tends to paint worst case on this -- or when I was learning about it for her, that was the case...

Good luck to you and your child!!!

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R.R.

answers from Charleston on

I sorry for your daughter's difficulties. I'm sure that with your love, care and proactive support she will reach her fullest potential.

Regarding the sensory issues, there is a good online support group for parents of children with Sensory Processing Disorder, which is also called Sensory Integration Disorder. You can find it at http://health.groups.yahoo.com/group/sid_dsi

Also, there are so many great web sites that can help you understand it and seek the best treatments. www.sensory-processing-disorder.com or www.spdfoundation.net. A well-liked and respected book on this subject is The Out-of-Sync Child, by Carol Kranowitz. It's the "parents bible" to SPD.

Keep researching and fighting for your daughter. There are many resources out there and people who can help you help her!

Warmest wishes,
Regina

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L.Z.

answers from Atlanta on

I have two friends with children who have SPD. Both caught it early, as you did, and their kids are now 5 and doing very well.

Both children have undergone weekly OT and speech therapy. It's amazing the difference it has made. One used to be prone to hysterics over little things and very physical with other children and the other would cry if she heard a loud noise and balk at doing anything where there was noise. After the therapy, both are genuinely happy kids who are well-adjusted and keeping up in kindergarten.

It is lifelong, but the therapy teaches them ways to handle outside stimuli that would have previously upset them. One had music therapy that would calm him and help him adjust to new situations, and their mothers would learn what they could do to ease transitions.

Interestingly, they have different kinds of SPD: the boy gets easily overstimulated and would push or crash into things, but I remember one of the techniques was to brush his arms and legs with a soft brush to reset his body's expectations of stimulus. The girl was extremely sensitive to sound and would get hysterical over startling noises, and I'm not sure what her therapy included. She's hypersensitive and he seeks stimulation. Either way, the OT and speech therapy has turned them into different children, and their SPD is more or less under control.

Find a good OT, and get started now. The key to helping her learn how to deal with the effects of the SPD is early intervention. As kids with SPD age, they will understand how to deal with the frustrations created by the disorder, and it makes their lives much richer and less frustrating. Good for you, catching it early! She will be fine, with your help.

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H.C.

answers from Atlanta on

Check out the May Institute at www.mayinstitute.org

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