A Step By Step Guide For SPD Parents: The Seven Steps For Helping Your SPD Child

"I think my child has SPD... Where do I begin?"... "Where do I go for help?"... "What do I do now?"... "How do I find an OT in my area that can diagnose SPD?"

Email after email has brought these (and many similar) questions to my attention. It was then that I realized I needed to add a "Step-by-Step Guide For SPD Parents" in very explicit terms... specifically for those of you just entering the world of SPD as a plausible explanation and diagnosis for you or your child. Here's to all the "newbies"! I do hope this helps...

Step One

Read, print a copy, and fill out the following checklists as they apply to your child that you suspect has SPD:

Sensory Processing Disorder Checklist (all ages)
 

Infant / Toddler SPD Checklist (0-3)
 

Developmental Checklist (ages 0-5)
 

Adolescent / Adult Checklist (ages 12-100)

Step Two

Bring the completed checklists to your child's pediatrician, discuss it with him, and ask for a referral to an Occupational Therapist for an evaluation. If the pediatrician does not "believe in" SPD, or refuses to make a referral to a specialist for this evaluation, find a new doctor!

If the pediatrician wants to refer you to a developmental specialist as well, even better... they can rule out (or pick up) other developmental disorders. Keep in mind, many SPD kids have other diagnoses... not all, but many. So, now's the time to find out!

Additionally, a referral to a psychologist will help both you and your child deal with the multiple issues that have, and will continue to arise individually and as a family. Be proactive! Don't wait!

Step Three

Find out which clinic, hospital, program, or private therapist will be the best place to have an Occupational Therapist evaluate your child (or YOU, if you are an adult seeking a diagnosis and treatment). Note that ages 0-3 will want to find the "Early Intervention" program, and ages 3-5 will want the "Child Find" program in your area... both of which should be run by your town's school department.

Please read the following article carefully for help:

Tips For Finding OT Services
 

ALSO, make sure you call your insurance company AND ask the facility or the OT whether they accept your insurance for such an evaluation. Just a warning...often they will not, YET! These evaluations CAN BE quite costly (up to $800)...but, how can you really put a price on finding the proper diagnosis and treatment for your child? Believe me, it is MUCH more "costly" in both time, frustration, money to be given incorrect and unnecessary tests, diagnoses, and even medication! Once you receive the PROPER diagnosis, treatment will seem relatively "easy".

I can't tell you how many parents would have GLADLY shelled out the money necessary for a proper evaluation, had they only known!!! Years and years of doubts, blame, frustration, misdiagnoses, endless and unnecessary doctor's visits and treatment, as well as increasing symptoms/difficulties at home and school have all, LITERALLY, almost destroyed lives! Please don't let it get this bad for YOU!

One more thing on insurance... In MOST cases any form of Medicaid WILL cover evaluation and treatment as long as the therapist uses the "right" codes for reimbursement and the proper wording to justify it. This is precisely the reason my friend Michelle Morris has put together a nice list of "Commonly Reimbursed Diagnostic Codes" (see link below) which will apply to regular insurance as well as Medicaid. So, in most cases, using acceptable diagnostic codes, Medicaid covers almost all necessary OT services for SPD.

Michelle adds, "Additionally, for instance, it will cover therapeutic interventions, right? But not cover equipment like Listening Therapy equipment, brushes, massager, companion programs (for example, Handwriting Without Tears) etc. UNLESS a person has CMS type Medicaid. If they DO, then a parent may apply to get a certain monetary allowance to cover specific therapeutic equipment, and these items can be purchased with the money. So... there are rules and then there are RULES, and depending on how savvy the OT is, and the wording USED this can be different.

But yes, the general rule of thumb, using the appropriate diagnostic codes when requesting payment by Medicaid for SPD OT, they cover it... the evaluation AND treatment."

(More tips on insurance reimbursement and financial help listed under STEP SIX)

Step Four

While you are waiting for your evaluation, read, read, read everything about SPD you can get your hands on! Here are some recommended resources:

For those of you who have tried to navigate all the way through my two sites, it seems as though the articles are endless. The best way to get everywhere you want to go, is to take a look at the Sensory-Processing-Disorder.com Site Map and/or type in specific words on the "Site Search" page. These two pages will help you if you are having trouble. But, most often the questions I get are answered somewhere on these sites.

Other places to look for recommendations of resources would be:

Parent Resources
 

Occupational Therapy Resources
 

Autism, Aspergers, and PDD Resources
 

ADD and ADHD Resources
 

SPD Guest Articles

Step Five 
The Evaluation

The testing process is quite involved if done properly, as it should be! Testing should involve multiple disciplines (for input at the least), but can be done by one qualified professional such as an Occupational Therapist. It can be done within an early intervention program, school system, teaching hospital, children's hospital or at a special clinic that diagnoses and treats Sensory Processing Disorders.

The following components should be included if possible:

interviews and questionnaires for the child, family, teachers, other people or professionals who interact with the child to guide testing and decide whether further evaluation is necessary (the questionnaires will be based on overall functioning, developmental milestones, and behavioral indicators of sensory dysfunction)

perform standardized tests and non-standardized tests with the child in a sensory/testing room which will include performing gross motor, fine motor, oral motor, and visual perception tasks, making observations regarding all sensory systems and developmental milestones, as well as reactions to (and processing of) oral, auditory, vestibular, proprioceptive, olfactory, tactile input, and performance of tasks.

 

the OT will then score and evaluate all findings, deciding which, if any, sensory systems are significantly impacted, and if so, how much, when, and why.

 

a meeting with the parents, and child (if appropriate), to report all results, concerns, and specifics of testing outcomes, and educate all those present on sensory processing disorders as it relates to their child.

 

agree on a plan; if the child will have treatment, how much, how often, what the treatment will entail, any home or school programs, etc.

 

the therapist will then write and agree on goals/treatment with parents and/or child.

Remember this...

A good, thorough, proper diagnosis ALWAYS includes a questionnaire (or several). Generally speaking, the parents fill the questionnaire out, however, a child over 7 (or so) can be the one who "answers the questions" too. But, usually, the parent/teacher/professional fills it out, with or without the child's input, and the person testing the individual will ask the child further questions based on this questionnaire. So, technically, the child plays a pretty "active role" in the questionnaire process, but unless the child is of the teenage years (and that is not a be-all-and-end-all age requirement), someone else usually fills it out. There are adolescent and adult questionnaires designed specifically for that individual to fill out. When appropriate, we use them.

It will take many pairs of eyes and they should all be involved in the "questionnaire" or interviewing/gathering information process! We all see different things, and children act differently in different settings (especially kids with Sensory Processing Disorder!) based on many situational/contextual/environmental factors. The other thing to remember, is we are trying to identify these children as early as possible, so most of them are too young to fill a questionnaire out anyway. Sometimes, I had kids fill one out in addition to the parents to compare two different experiences and perspectives. It is very different living with it, and living WITH it!

Step Six

Begin treatment, if recommended. More often than not, this will be paid for by regular insurance, thank goodness! (Although, as previously mentioned, companion therapies may not be). Once the diagnosis is confirmed, treatment can focus on areas of dysfunction that are "billable". Are you wondering what some of those diagnoses and codes are?

Then click here for a list of commonly used diagnostic codes for SPD/SID therapy.
 

Also, keep in mind, if Sensory Integration therapy is being done before age 3, it is free when you go through your local Early Intervention Program (as long as there are developmental, physical, and/or social/emotional delays) And, ages 3-5 are also usually free through the Child Find Program (again, call your local school department for more on this).

Additionally, The Elks, if you have one in your area, has been a wonderful resource for parents... including evaluation, treatment, and therapeutic supplies/products when parents can not otherwise afford therapy. Look that one up if you are in this situation!

Be prepared to become a very active participant in your child's therapy! Therapy will not work, if you don't work it! It is a daily commitment since you will usually be asked to follow a Sensory Diet and/or certain activities/homework between therapy appointments. Make sure you are ready for this commitment... you will play a major role in the success of your child!

Know that there are many therapeutic products and programs that can be/are used in addition to direct OT sessions. Some of them can be expensive as well. But, again, the positive changes in your child and family will be priceless!

If money is a major hurdle for you during the evaluation and treatment phases, here is a great article about community resources that may help/be available to you "Financial Help For Sensory Products".

Step Seven

Connect with other parents of SPD kids (ASAP, even before evaluation if possible), give back to your community via online support groups/ forums, and/or by becoming an "SPD Parent Host".

Are you looking for support? Go to SPDAdultSHARE (for adolescents and adults with suspected, or diagnosed, SPD).

I do hope this information proves helpful to you in where to go next! If you have further questions, feel free to ask any of the SPDparentshare hosts. Good luck on your journey and thank you so much for advocating for your children!! They need you and are lucky to have you!

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder (The Out-of-Sync Child Series)

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