19 answers

Sensory Processing Disorder / Sensory Integration Issues

Does anyone have experience with Sensory Processing Disorder / Sensory Integration Issues? My son (6 years old) needs to be evaluated....I have multiple opinions regarding where we should start. Neurologist? NeuroPsychologist? Child Psychologist? Occupational Therapist? His main issues are 1) tip toe walking (currently working with Orthopedic Doctor for the physical issues, but clearly is a neurological cause) 2) Frequent tantrums/whining, easily goes into "overload" 3)Fine motor skills. Does anyone have experience with this with their own children? He worked with an OT over the summer for fine motor skills - but he needs more help, and I need to know how to help him. We have already spent thousands of dollars on visual therapy and occupational therapy, this has helped - but not a solution. Any referrals for NW Phoenix area would be appreciated. Much of what we have found is not covered by insurance, so it would be nice to find someone who has been through this to help minimize costs, and go down the right path.

What can I do next?

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I don't have anything for you here, just some advice. My niece has sensory processing disorder as well. Her teachers wanted to diagnosis her with ADHD or autism and wanted her on meds for school. My sister's doctor told her that she would never resolve the SPD if she put her ADHD medication. So my sister went to a homeopathic doctor who suggested diet changes such as removing dairy and wheat to help calm her and help her focus on the SPD issues thru OT/PT. She removed all wheat and gluten from her diet and now her teachers say they see NO signs of any ADHD or Autism, and she is doing wonderful in OT/PT and realizing more sensation in her joints and learning to control herself. Just wanted to let you know that you are not alone! Good luck!

if you haven't been to the melmed center that is where i would recommend starting. They work with a large number of disabilities and diagnosing them. http://www.melmedcenter.com/

also has he started school yet? Many of the services that you are mentioning are provided free from the schools. If he hasn't been evaluated yet by his school talk to his teacher and the head of his school's special education program.

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Hi M., My 13-year-old son has Sensory Integration Dysfunction and we finally got him diagnosed at age 7 after many years of confusion and guessing. It was such a relief to know what was going on with him after all that time! He went immediately into OT, having issues with clothing, touch, textures, fine motor and some gross motor. He also had/has problems with crowds, loud sounds, working memory, self esteem, and is movement seeking to the extreme! We were fortunate that our insurance covered the OT except for a $10 co-pay. Keep up with the OT as it is the only option for the DSI - this is something that your child will simply have to learn coping skills for. We went to Banner Desert Behavior Center for his evaluation and treatment, but I'm afraid they may have closed that part of the hospital down. Keep in mind you cannot look for a "solution" as there is no "cure" for this, and no medication he can take (thank goodness because I strongly disagree with the over- prescribing of pharmaceuticals for kids) - it is something your son will live with the rest of his life - your best approach is to help him learn the coping skills he'll need to succeed in every situation in life. My son learned about the situations that brought out a negative response and learned to avoid them. He learned how to communicate his state of mind through the "engine" technique. I spent a lot of time educating his teachers about DSI and giving them some simple accomodations to do in the classroom to ensure his success in school. You must be your child's advocate and do lots of research. Every child who has DSI has it differently and uniquely, and to different degrees. Learn as much about it as you can and do whatever you have to do to help him learn about it, accept it as part of him, and love and support him through it. It is a brain disorder, and there's no pill that will change that. My son finished with OT at age 10, so there may be a time when you don't have to do that anymore. You will be surprised at the changes that happen as they age and mature. My son has made huge strides just by getting older! He's replaced some of the old problems with new ones (as is true with all teens!) but now he has the knowledge, support and skills to cope with all that comes along. If you need someone to talk more about this, even just for support and to vent (I know how frustrating it can be!), please let me know, I'm happy to help in any way I can.

1 mom found this helpful

Hi M.

My 5 year old son has Sensory Processing Disorder. I am an OT here in AZ and I work in a school district. I have to agree with Tania....I would not look for therapy in the schools to be your first or only mode of treating your child. What school based OTs can provide is not everything a child with Sensory Processing Disorder needs.

I would really recommend finding a pediatric Occupational Therapist or Physical Therapist who specialized in Sensory Integration. Not all Pediatric OTs or PT have that specialized training in Sensory Integration (SI).

You might look at the provider directory for your insurance carrier and see if there is a list of hospitals or clinics that they cover and call them to see if they have an OT or PT that specializes in SI.

Our insurance didn't cover any of my son's therapy, then I found out that I could take him to his therapist who is an out-of-network provider as if she was an in-network-provider by getting a medical exception. Basically it involved calling repeatedly to the insurance company and letting them know that they didn't have anyone on their in-network list that provided the service that he needed. It took a few calls to get to the right person who could authorize it but it now enables us to take my son to his therapist and we pay as if we were going to an in-network provider which helps reduce some of the cost for us.

I'll also recommend a great book to you Sensational Kids, it is written by Dr Lucy Jane Miller. She is on the forefront on research on SPD and is an authority on the topic. She also runs a clnic/foundation in Colorado, they have a website http://www.spdfoundation.net/ that also has a lot of good information.

Hope this helps....good luck.

1 mom found this helpful

My 5 year old son has sensory intergration dysfunction. He has been in therapys since he was 3 months old. Call the DDD. (Department of Developmental Disabilitys) Most DDD stuff is FREE!!! We have had a Developmental Mental Therapist, OT and Speach Therapist as well. If you would like to learn more on SID read the book: The Out Of-Sync Child. It is a GREAT resource to help you understand your son. My son use to FREAK out in crouds, he would rock so hard if he was in the stroller he would bruise his head. He walked around with his fingers spread because he couldnt stand the feel of them touching any thing, even his own skin from the palm of his hands. He hated being picked up or touched. Coulddnt stand eye contact. He wouldnt eat in resturants because he was so stressed out from all the people. He couldnt dress him self because his hand muscles were too weak. He has a hard time coloring, because holding the pencil is hard work. He cant still cant sleep in a bed because his brain cant process being off the ground. Over the past 4 years we have made incredable improvements... I can hug him now, he holds my hand, it takes him a while but he can eat out, he still cant stand large crouds and dosent like strangers looking at him, but we can go shopping with out him screaming for 3 hours after, he still struggles putting his shoes on and pulling his pants off, coloring and cutting with scisors is difficult, but the therapy helps so much!!! DEF. call DDD their # is ###-###-####.

Go through the public school system, I did that with my son, but he was haivng diferent issues. They tell you a place where you can get your child tested. It is competly free, they will determine if your child needs more help, and if they do they assign you a school to your zipcode. They will start the school right away if their accepted. My son started after spring break last year. It is doing him good as well. Good luck.

Good for you for paying attention! Realize that what he's experiencing is real and that you may have to run interference for a good long while to protect him from those factors in his environment that are just too much. Particularly because children with SI Disorder don't "look" different people tend to think they're acting spoiled,neurotic, etc. For evaluation and recommendations, I'd seek out a pediactric neuropsychologist. A few good books on the topic are "The Out of Sync Child", "The Out of Sync Child Has Fun" and "The Highly Sensitive Person". I don't know AZ Special Ed laws, but it may be possible for you to get some of the services (especally OT) through the public schools Special Ed if he qualifies. Charter schools are still considered public schools and even if it's a private school, special ed services are still available. Wishing you the best.

I don't have anything for you here, just some advice. My niece has sensory processing disorder as well. Her teachers wanted to diagnosis her with ADHD or autism and wanted her on meds for school. My sister's doctor told her that she would never resolve the SPD if she put her ADHD medication. So my sister went to a homeopathic doctor who suggested diet changes such as removing dairy and wheat to help calm her and help her focus on the SPD issues thru OT/PT. She removed all wheat and gluten from her diet and now her teachers say they see NO signs of any ADHD or Autism, and she is doing wonderful in OT/PT and realizing more sensation in her joints and learning to control herself. Just wanted to let you know that you are not alone! Good luck!

First of all, I am so happy you are a surviver *grin*

Second,I am so happy you have a supporting husband.

Third, I am sorry you are having these issues with your son.

I work for a couple of agencies that deal with all kinds of differnt special needs for children. I have them posted on my profile page here. The first thing I would do if you have not already done so is contact the DDD Department of Developmental Disablities in your area. You can get a case manager and from there you should be able to get funding through the state that you are in and direction on where you should go to next. You are not alone.

I hope this helps,
God bless to you and your family,
N.
www.aromaticbotanicals.com

My experience and research regarding kids with any kind of neurological disorder roots the causes to heavy metal toxicity. Heavy metals get into our systems and if not properly flushed out on a regular basis will build up to damaging, degenerative levels. They are utilized by parasites, fungus and yeast to assist those organisms in colonizing unhealthy or low immune bodies causing more "disease". Heavy metals lodging in the creases of the brain using the fungal entity aspergillis niger cause symptoms ranging from some you mention in your child as well as symptoms associated with ADHD and other attention disorders. Heavy metals are in everything from the air we breathe, to tooth fillings, to the commercial fabric softeners, makeup and body products available to the average consumer, to foods and the vaccinations the FDA approves as safe for our children. One food that is very good at pulling heavy metals out of the body is fresh cilantro. However, for intervention levels rather than maintenance, it needs to be eaten daily in quantity (like salad) and you also need to ensure that it isn't grown in soil where a lot of heavy metals are present or it will have leeched them from the soil while growing and they will be in the food adding to the problem instead of helping to resolve it. However, I can recommend some pure, safe and completely natural herbal products that address flushing heavy metals from the system. They contain herbs from the Amazon rainforest and have been proven over centuries of use to work effectively. Plus being grown in the virgin soil of the rainforest ensures that there is no heavy metal toxicity present - and the company that provides these herbs employs the indigenous people to sustainably grow and harvest these plants without cutting down the rainforest so there is no destruction being caused by the activity - only positive actions and deeds. Feel free to contact me for more specific information about the products I recommend.

Hi M.,
I am mom to a 5 year old with CP,sensory issues, etc... I also have taught children with Sensory Disorder. Some parents have their child evaluated at Melmed Center. Their website is www.melmedcenter.com and there is also a fabulous book that helped me as a teacher/parent called The Out of Sync Child. I have heard of SIRI, but have no first hand experience of the organization. Hope this helps you work with your wonderfully unique son! :) Jen

Have none of the doctors suggested Physical Therapy??!! I have worked as a PT for 10 years, though not as a pediatric PT, but from my experience and observations, this would be a huge benefit to your child!(I did a clinical rotation of Peds while in school) If you should decide to pursue this route, which I would highly, highly recommend, definately get a Physical Therapy referral for Pediatric PT! Good Luck! If you have any other questions, feel free to contact me!

The neurologist is the first place to start. The neurologist has access to the resource and can also help set them up for you. If the neurologist requires the treatment then the insurance companys can deny the claims.

I would recommend the Melmed Center in Phoenix. We went there last december to get our daughter diagnosed. Her diagnosis was Autism, but I believe they deal with numerous types of disorders and issues like that.

Hi M.,
My name is M. and I have 3 children. My oldest (who is 10 now) was diagnosed with ADHD and sensory dysfunction at age 4. I took him to a woman named Debbie Hines, who is an OT at Scottsdale Fiesta in Paradise Valley on Tatum and Shea. She is amazing and helped us through SO much. I know she has a waiting list, but worth calling her, talking to her and waiting to see her or one of the OT's that she would recommend. Our insurance pretty much covered almost all of his therapy (BCBS). He went through several years of OT and speech and is doing very well in the 4th grade currently. One of my favorite books is the "Out of Sync Child." You have probably read that and there is a book that goes along with it for teacher's as well to help them understand your child better.
Debbie's # is: ###-###-#### if you need it. I hope that helps you a little. I know it is so tough, but as they mature, they are able to grow out of certain things and grow into their little bodies better and things that keep us up all night worrying, seem to just go away.
M.

Hi M.,
I'm an OT who works in the NM public schools. I've worked with several kids with basic sensory processing issues (basically, "normal" kids who are a bit over- or under- sensitive to their sensory "environment") to Asberger's and Autism.

I am not familiar with AZ's public school system, but I would definitly NOT recommend you look into public-school-only as your primary source for treatment, unless the ONLY thing being affected by your little boy's processing disorder is his schoolwork. If he qualifies for services through the school district (and he may or may not, even with an established sensory-processing diagnosis), he's not likely to get more than 1 hour of educationally-focused OT per week (and there's a chance he'll get less than that). And the OT is unlikely to be one-on-one (and there's no guarantee he'll even be kept in "small-group" therapy!) Other therapies would be no different.

I'm being a little discouraging - sorry. I'm not trying to. I'm behind you 100% for being a great mom and helping your son, but it gets under my skin when I see some parents suggesting for you to just go for the "free" therapy, when that may not be enough for your little one.

I apologize to everyone in AZ if things are very different in your public school systems than here. I am NOT familiar with how it works, and if you have a better system than we do, then I'll admit I am wrong.

I wish you luck in finding all the help and love your son deserves!
T

Get your son an Ed/therapy through the school system. All of these services are available at no cost to you through the school system. You will have to fight fairly hard for it and I would get a lawyer who specializes in academic issues, but It is worth it to get your child the help he needs. Also your husband needs to help with this. When dad shows up to an ed meeting there is more leverage.

My son, now 8 also has this. I didn't know about it until he was 4, but knew he was a high-need baby. I brought behavioral issue to his ped. to no avail. I had no idea what else to do. Well, he has Aspergers, a high functioning form of autism. He didn't do the tiptoe thing, but the tiptoeing is also a symptom of autism. Why would you need the label if it applies? Because Arizona has recently passed a law that health insurance plans must cover therapies for autism. If your therapist doesn't accept the insurance, file for reimbursement from your insurance company. There are exceptions, however, and I believe we fall under it because DH's company is self insured and self insured companies don't have to pay. So not fair.

Anyway, thee first step is to get your child to a Developmental Pediatrician for evaluation. Regular peds simply don't specialize in that area, and so many are not qualified to screen for it. In screening, you usually have to fill out multiple page questionnairs, and the first meeting can be 2-3 hours (of fun for the child because 1) they get the attention, 2) they get to play while being observed, and 3) they get to answer questions and show how smart they are. There's also a physical given.

Where to go? Your ped SHOULD be able to supply names, but that isn't what ours did (come to find out, he did know the info, but thought my son was "normal". I knew differently. In north Scottsdale, there's the Melmed center...they did my son. My insurance covered all but my copay (then $20, but now $50) for my appointments. However, they try to push their own therapies and seminars, which are VERY expensive - I call it overpriced. Hint: On May 6, 2008, it was reported that Raun Melmed and his wife purchased a 6174 sq. foot home in Paradise Valley for $2,580,000. The clinic's not his only income, but still, I don't feel it's fair that we go broke paying for therapies while people get rich off our misfortune, especially when they could have done SO MUCH more for my son than they did, but I was too naive to ask for it.

Dr. Kessler at St. Joe's is reported to be good. Dr. Timothy Jordan I hear very mixed things about. Try to check with the therapists you know, since you already have relationships there, to get some more names in your area. Feel free to contact me. I moderate the Special Needs section on a board I frequent (which is a money saving board about being frugal - I don't own it, nor do I get compensated in any way for bringing in new members or for moderating.) I just saw others who were disconnected and felt alone, not knowing which way to turn and asked the board owner for a forum like that. I think I'm going on 3 years on it. The board is Mommysavers.com. (If you sign up, PM me there and let me know who you are when you intro yourself in the Welcome forum).

I agree about the Out of Sync series of books. Also, request that your school psychologist and district test your child. Their testing helps also paint a broad picture for the Dev. Ped., and the Dev. Ped's diagnosis can help get services needed at school.

I hope some of this info helped. Good luck.

I have a 7-yr old with sdp, i agree with the others to go thru the school system, however, educate yourself as much as possible. observe and write down all of his "symptoms", as specific as you can get: why is he overloading? touch, auditory, temperature, itchy clothes, etc. some people aren't familiar with spd, so you may have to convince them to refer you to someone more knowledgeable. do a google search and read up on it as much as possible to see if you indeed think that's what his issue is. also, be aware that there is never really a "solution" to these issues, it's a matter of changing how you deal with him, fighting for his right to be accomodated at school, and most importantly, teaching him how to deal with it himself and self-advocate. My son was diagnosed at 5, he has now either out-grown or learned to deal with almost all of his sensory issues. we taught him early how to be self-aware of his feelings, why he's feeling the way he is, and how to remove himself from a situation or work thru it on his own. because of this, he has a lot of empathy for other kids who normally would be shunned. so, good things can come out of this experience! (oh- and the out-of-sync child books are excellent)

Hi M.- Tell your school district. He should be getting OT at the school at no charge to you. Your school can evaluate him also. I worked with kids birth to three with developmental delays and we transitioned out little ones into the school district (who evaluates them). Once they make it throught the district preschool system, they go into the school district. The child will be put on an IEP (Individual Education Plan or Program) and the school, if your son qualifies, will provide therapy at the school. Also, they will work with your son's teacher to help the class run smoothly if the sensory processing disorder is effecting him there too. Schools have a phychiatrist as well as every discipline of therapy to evaluate him. That way it is free of charge (which would help keep the private insurance monies to go to what the school wont cover) and if he is having challenges in class, they can help him there too. If you need more info, reply and I will do what I can to help. Good luck!

if you haven't been to the melmed center that is where i would recommend starting. They work with a large number of disabilities and diagnosing them. http://www.melmedcenter.com/

also has he started school yet? Many of the services that you are mentioning are provided free from the schools. If he hasn't been evaluated yet by his school talk to his teacher and the head of his school's special education program.

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