SPD mamas-have you read this yet?

kcisthebombdotcom · May 2012

https://abcnews.go.com/Health/sensory-integration-therapies-lack-evidence-aap/story?id=16432703

Is anyone else as outraged as I am?

kcisthebombdotcom · May 2012

-auntie-:

Why outrage?

For parents with kids who truly have the disorder it's disheartening for them to say that it isn't an official condition. It gives insurance companies an out to not cover treatments (as I wait to see if my son's weighted vest will be covered). The sensory therapies have made my child's language explode. It's sad that other parents can't get the opportunity if their insurance won't cover.

I also think a lot of kids with sensory issues are misdiagnosed as ADHD and prescribed strong drugs whereas therapy would be a better fit, but I guess that's a totally different issue altogether.

kcisthebombdotcom · May 2012

-auntie-:

I know parents on both sides of the SPD fence. It's a controversial dx.

There are those who have been over-sold on the SPD tx plans and who have squandered considerable time and money on unproven therapies that did little. And those who can't get schools or insurance companies to treat or accommodate a condition that isn't included in the DSM.

For the record, I see many more parents embracing SPD for an explanation of behavioral and developmental issues than the other way around. I've seen kids who clearly meet the diagnostic criteria whose parents glom onto sensory issues because it seems a "better" dx and miss out on important early interventions.

It looks like the workgroups of the APA do not plan to include the dx in the DSM5. If you haven't registered your thoughts on this, you can do so via this link-

https://kastingconnections.blogspot.com/2012/05/sensory-processing-disorder-and-dsm-v.html

I do wish there was some clarity from scientifically vetted research in this area. It pains me to think that there are families pissing away time and resources needlessly- or -doing without meaningful and proven therapies. We need more information.

IME in my own home, DS met the current criteria for SPD as a preschooler but has largely outgrown the more unpleasant and disabling features without having any specific therapies aimed at them. For us this seemed to be more of an immaturity issue that improved with time.

In reading the spd foundation's rebuttal to the AAP, it seems like a lot of research was overlooked for being too new. I also think that therapy isn't a cure all and every child will respond differently. However, isn't that true of any disorder? There isn't a magic fix for any disorder on the DSM.

I agree that lots of sensory issues resolve with age. However, in having a child with apraxia (and being a person who struggled with is as a child and still struggles with sensory issues as an adult because of it) my son would have never made the strides he has in his language development without speech therapy combined with sensory integration therapy. I think being very proactive and getting him into therapy before 2 helped but having his OT work with him has made him able to actively participate in his speech therapy. Waiting until his sensory issues resolved with age would have made us miss a huge window where we could improve his expressive language skills. Thinking of all the kids with apraxia who are now not going to be able to receive therapies because of this statement makes me very, ver sad.

Heather & Nayt · May 2012

I understand that SPD is a controversial dx right now but I firmly believe it. I am not letting it keep me from further testing to see if he is on the spectrum but we are at a stand still right now waiting from him to turn 3 when our pedi tests and on the waiting list for November to see a specialist since they have a 6-8 month wait list.

So until that time it is a solid dx we have and have been working on therapy for it. Within a month we have already seen some changes. You can't tell me that it is all in my head.

And it makes me sad that if we don't get a solid PDD-POS dx than all hope of our insurance covering his therapy goes out the window because it won't be recognized by our insurance. And I am sure that I am not the only one in that boat. Regardless of what side of the fence you sit on with SPD, it is real for my son and it hurts that he may not get the help he needs.

So for me, I am not out raged, but I am disappointed.

st.augbride · May 2012

I do think that this is a tough situation. On one hand, they definitely do need more and better research done. On the other, SPD is such a mixed bag, that it's difficult to assess kids in a standardized way in the research studies. Personally, I believe I have some sensory issues and have my whole life, though obviously I have just coped as it's never stopped me. Ds has clear vestibular issues, and we wanted to seek help addressing them since his head shaking and need for constant movement was also affecting his PT and ST. Anyhow, our ST suggested that we work with a top ped OT in our area and do a 2 week OT bootcamp which is supposed to have amazing results for kids. So we did. And $1300 later (still waiting for insurance to process the claims), I'm not convinced it did a darn thing even though th eOT said she sees major changes. Personally, I do think time and maturity and further development in speech and motor skills has helped a lot. So, personally I am not sold on OT's approach for this. Also, the OT acted like ds also had major sensory issues with textures and noises. He is sensitive to some sounds for sure, and maybe was funnier about some textures, but it never stopped him from tasting something or exploring a new object he was interested in. When I discussed this diagnosis with our PT (who is excellent), she also didn't fully buy it for ds and wondered how many NT kids would also respond this way to the very odd things the OT had ds see and do in therapy. I couldn't agree more. I'm sure some aspects help some kids, but I can see how it is not objective enough to be fully justified. I do think it's something most kids "outgrow" by just learning how to cope and compensate. Therapy might speed that process along for some, but for us it did not.

SPD mamas-have you read this yet?

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