Sensory Processing Disorder questions, and a huge thank you!!

[Upptacka]

A few months ago, I posted a thread seeking advice and book recommendations about ADD because I was totally convinced my 8 year old had it. Among the comments posted, several people highly recommended I take her in for a full neuropsych evaluation. I have also seen the same suggestion/recommendation in many other threads I have followed over the past 4-5 months. And I am here to report that this was/is great advice! Thank you!! :)

 

Prior to spending some time here, I didn't really understand the value in these evaluations, nor how to even go about getting something like that scheduled. I didn't even know something like that was an option.....I thought all we had was our school district and pediatrician. I guess I needed some guidance and direction, and I am so thankful I found that here.

 

My daughter underwent all the testing 3-4 weeks ago. I met with the psychologist yesterday to go over everything and talk about her assessment. Honestly, I was quite surprised! She felt strongly that my daughter does not have true ADHD (what?!), but instead a sensory processing disorder that is making her highly distractible -- making it appear like inattentive ADHD. Her outward symptoms of ADHD were very high (based on my responses from the questionnaires), but all of the other testing pointed to an underlying SPD.

 

It feels great to have some answers so we can move forward in the right direction! I also learned more about her innate strengths and weaknesses. Being her mom and teacher, I thought I had a pretty firm grasp of her strengths and weaknesses, but I was a little off. Also, the psych is very supportive and encouraging to continue with homeschool. She felt my daughter would really struggle in school right now, but not so much that she would qualify for any services (in other words, she would likely "fall through the cracks"). Prior to the appointment, I was considering enrolling her in public school this fall, questioning if she would do better there. So it also feels good to make the decision to homeschool, as well as have some validation that it is probably best for her.

 

All in all, it was well worth it and I am so glad we did it!

 

I haven't done much reading/research about SPD, but plan to. I would love to hear from anyone who has experience with SPD. Do you have any advice, recommendations, and/or good books I should read? I suspect she is pretty classic "sensory modulation disorder" subtype.

 

Also, the psychologist is strongly recommending OT. I am totally on board with that, so my daughter is scheduled to have her OT evaluation in about 3 weeks. We aren't strangers to OT -- she had 4 years of OT for oral motor/swallowing/texture problems (I guess I shouldn't be surprised we are struggling with sensory related issues again!)

 

I am hopeful the OT will help, but I don't know how to explain all of this to her. When she was younger, I just took her to OT "to play" and she never questioned it. Things are obviously different now, and I know she will have questions and want to understand why she is going. Is there a way to explain it so she doesn't feel like something is "wrong" with her? (She is very sensitive and prone to anxiety, so I need to be choosy with my words).

 

Sorry this got so long! My other assigned big task is to get much more organized and structured as far as routines and schedules go. This is going to be hard for me, but I think it will benefit all of us.

[rwilk]

DD has SPD and in some ways it looks like ADHD.  For her, she has trouble concentrating when there is noise around her---to the point that she becomes fairly non-responsive.  

 

OT has been great for DD, as has giving her more control over her sensory experience.  She has headphones that cancel noise that she can carry in a cute little bag, and she puts them on whenever she's overwhelmed by noise. She also has a weighted compression vest that helps squeeze her when she's feeling overloaded. Both have been awesome for her.

 

Everyone's brain works differently, feels differently, experiences the world differently.  There's nothing "wrong" with a kid that has SPD---just different. OT helps the child acclimate to the world in a way that makes it easier to interact in a positive way.  

[Upptacka]

Thank you rwilk! I love the headphones idea......where did you get yours?

[rwilk]

Amazon.  They had a bunch of different options, but the one we got was under 10 dollars.  I let DD pick it out---she liked that it was small and pink LOL.   

[PeterPan]

Going fast here.  First, glad you got evals!  Sounds like you're learning a ton!  Yes, mercy, get the OT.  Will you be paying for this or using insurance?  This is a long-haul kind of thing, so funding is always your next question.  Do NOT assume the psych is correct on that.  Maybe she/he is, sure, but our big name, $$$ neuropsych in a major city was WRONG, WRONG, WRONG on more things than one.  Like he misdiagnosed my ds ADHD-inattentive (clearly not) and wouldn't diagnose the autism (yes).  And he told us ds' issues were so mild he wouldn't get an IEP, and the school BENT OVER BACKWARDS to give us an IEP.  And not only that, but they added SLDs that I was sure were there that the first psych was stubborn about!  

 

And the reason it matters is because sometimes your ps will give you therapy and sometimes there is state funding that comes with an IEP.  So don't assume you won't qualify!  They'll say they don't do an IEP for just OT, but that anxiety can drive toward an IEP also.  So if there's funding or access to services in your state, definitely try!  Besides, when you do the IEP process, you're going to get a lot of shoe leather on these recommendations. 

 

You might want to look into Zones of Regulation.  There's training (good) or buy the book or find an OT who does it.  Our behaviorist and the OTs are trained in it, so we get a lot of discussion of how to apply it to our school time, to our extra-currics, etc. etc.  

 

Glad you're getting on the right path!  :)

[Upptacka]

 

Thank you for your reply, OhElizabeth!

 

Our health insurance will kick in and cover OT 100% after we hit our annual deductible. Our plan renews on July 1, so we will likely switch to the higher premium/lower deductible option, knowing that we will be hitting the deductible.

 

It is so interesting (and very helpful) to hear what you said about your experience with the neuropsych and IEP. I am definitely keeping that in the back of my mind! When the neuropsych told me my daughter wouldn't qualify for any services or accommodations at a school, it contradicted everything I have heard from friends and our pediatrician, so it surprised me. That is an important reminder that I can't put too much weight in one professional's opinion! It is a nice starting point, though. The more I am leaning about SPD, the more it makes sense to me. I still question if she has a little ADHD in combination, but I suppose the picture will be more clear after we work on OT and other suggestions. I am looking forward to her OT eval, because I am very interested in the OT's assessment.

 

I will definitely look into and talk to her OT about zones of regulation -- thanks!

[Carol in Cal.]

How I would approach the OT is that she is helping your DD exercise her brain to help it grow.

 

[Upptacka]

How I would approach the OT is that she is helping your DD exercise her brain to help it grow.

I love this! Thanks! :)

[Carol in Cal.]

I love this! Thanks! :)

BT, DT.  :)

[Tiramisu]

I still haven't come to terms with no-ADHD diagnoses for two kid who are functionally very obviously ADHD.

 

The oldest has CAPD and some other processing glitches, but that doesn't seem to explain it all.

 

Another one got an ASD dx but outwardly looks much more like she has ADHD. That np called her attention problem an EF issue, not true ADHD.

 

And all of my kids have sensory issues issues, like the OP's DD.

 

I think Elizabeth is right about different specialists having different interpretations. And, over time things can become clearer and other difficulties more obvious, and that will help discerning.

 

The important thing is really getting the therapies that help, even when things don't seem as clear as we'd like.

[Storygirl]

I'm glad you got some answers! I think working with an OT is a great place to begin. Our OT taught us many calming techniques, which were very helpful, and also gave us a lot of activities we could do at home. If you can plan to set aside some time each day to work on a sensory diet (your OT will surely give you ideas for this), it can make a significant difference. Our pediatrician and psychologist also recommended calming and mindfulness techniques. We especially enjoyed using the book Sitting Still Like a Frog, which comes with a CD that leads the child through some focusing and calming routines.

 

Sometimes SPD can look like ADHD. But sometimes a child can have both. So if after addressing the SPD, if you have any niggling doubts about the ADHD, you could get a second opinion. Pediatricians, psychiatrists, and psychologists can all diagnose ADHD (though psychologists cannot prescribe meds).