PLEASE HELP US

I have a 6-year-old son who I know has some, if not a lot, of sensory processing issues. I have read The Out-Of-Sync Child and have met with two OTs who have identified SPD symptoms. However, people have also suggested that my son has ADD because of his inability to focus and attend to his work at school and homework. He brings home work that he had 30 minutes to complete and only has one word written on the page. His teacher says he is into himself and makes movements or has tendencies during this time. However, I have seen him attend quite well to things he is interested in.


I am so confused, frustrated, worried (big time)and do not know what to believe. I feel that these symptoms relate to the SPD because he is a sensory seeker and is not receiving enough stimulation before such activities. My gut tells me this is not ADD but totally SPD but this may be just a mother's instinct. I am afraid that my son will be labeled ADD and that is not the case at all. I am also afraid to continue using the treatment for SPD that I have read about in case I am doing the wrong thing. I believe he can be helped if it is SPD, but I seem to get a lot of negative feedback every time I mention it to someone. Either they have no idea what I am talking about or they think I am off my head. Only recently has my husband come online in a small way to accept that this may be the problem. I think he would prefer the ADD diagnosis.

The bottom line is that my son needs help and I need to help him as soon as I can. It has taken us months to get an appointment with a developmental pediatrician (which is coming up). His teacher thinks we should leave him alone yet she says he has ticks/tendencies. People think I am overreacting, my husband thinks I am babying him and yells a lot but then tries at times. My heart is breaking, and most importantly my son is frustrated, unhappy, and more and more angry by the day. SOMEONE PLEASE HELP US IF YOU CAN.

Thank you in advance for any help you can give,
Christine
St. John's, Newfoundland, Canada

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I am glad you are researching and advocating for your son. This is so wonderful to see; and, of course, necessary. I want you to feel good about everything you are doing to try and get your son the help he needs. Often we have to base our actions on, not only the facts, but our gut too. Keep doing what you are doing as it WILL bring answers.

Now, specifically... from what you have told me, it appears your son has been identified as having sensory issues from two different OT's, but he has NOT been officially evaluated for this? If this is the case, THIS is the place to start, and it appears you are trying to head in that direction.

I am pleased you have an appointment with a Developmental Pediatrician. This should help identify, or rule out, any other diagnoses besides SPD. They should be able to test and assess him for ADD/ADHD, Spectrum Disorders, learning disabilities, etc. They may also send you to a neurologist for further testing, which I encourage you to follow up on, if they do. All of this information will be important.

Chances are that the Developmental Pediatrician will not be able to diagnose SPD, or may not even acknowledge the validity or existence of such a diagnosis. Be prepared for that. You may indeed be lucky enough to find one that does, however. I hope so. But, regardless, it will be time and money well invested to rule out or identify and co-morbid conditions and get him receiving the help he needs.

As for the SPD... you MUST get an official evaluation done by an Occupational Therapist. This is really the ONLY way to know for sure if he has SPD, what areas are affected, and what treatment and/or accommodations he will need. Your best bet for a thorough evaluation is to find a "SIPT certified" OT. You can learn more about this by reading Finding An Occupational Therapist For SPD. Until you get that evaluation done it may not be clear what the best treatment is, or what diagnoses he has.

In regards to treatment. You say you are afraid to continue using treatments based on sensory integrative theories? Ah, you can relax on this one. I have yet to hear of one single child, no matter what diagnosis he carried, who has gotten WORSE as a result of this type of therapy. (If the diagnosis wasn't correct, they may not get better... but not that they get worse). In fact, there are even studies that show SI therapy helps kids with ADHD! So, do not be afraid here.

But, the treatment will indeed work best if targeted and tailored to his sensory needs. Treatment will need to be based on therapies that address his particular sensory processing issues. Therefore, the evaluation needs to be done, formally, and a treatment plan written and followed based on the evaluation data and information. So, please ask the Developmental Pediatrician, or your pediatrician, for a referral to an Occupational Therapist. Try to find one that is SIPT certified or who specializes in SPD.

Once you have the official, formal evaluation and diagnoses, people (including Dad) will have to believe you. Everyone will feel better.

Meanwhile, continue reading as much as you can about SPD. I would also suggest you join the online support group AllAboutKids, which has over 1,000 other parents who can support, validate you and provide resources for you. I hope this helps!



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Feb 19, 2009
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Dont give up
by: Anonymous

I am going through the same thing with my 7year old son. I have gone through the same fights you have written about with specialists and my husband and I have written notes like yours several times to get some sort of clarity or support. Things do get better and my sons is slowly showing improvement in class. Trust Michelles comments and trust yourself. Dont expect instant results but take one day at a time but foremost, Look after yourself and find someone or a group to talk to. I found talking to a support group very helpful and I began to piece things together and not felt so alone or feel like Im crazy it was good to bounce ideas off of and get some feedback from people in similar situations.

In the end I made it my aim to find a support network (for my child) which consisted of teacher, physcologist, OT Therapist and myself and my husband all working together to achieve results. My motto was TEAM = Together Everyone Achieves More. It took a while to find the right mix of people who worked together well, but we have got there and my son has shown quite an improvement. He is more happy, more productive in class, starting to identify and implement techniques to control his concentration.
My husband now understands and takes part in his OT Therapy at home, he soon understood that the OT therapy was lots of fun and he his making quite an effort. He yelled alot too because he became frustrated, didn't understand what SPD was and mostly didn't know what to do. It is now alot better. He still needs reminding every now and again that somethings my son cant help and its a matter of altering the environment and not pressuring the child.

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