Possible SPD

[Momto4inSoCal]

My daughter was diagnosed years ago with ADHD. She's had a lot of sensory issue's that I've noticed more the last few years. Looking back they have always been their I just assumed it was due to age and she would out grow it. I mentioned the issues with her pediatrician and he said it sounds like SPD and referred me to an occupational therapist. He said they can't do much about the issues with vibrations or loud noises. They can do therapy for the clothing issues (she will only wear sweats or t-shirt material sun dresses). Is there any other way to help with this? She was diagnosed with ADHD by a neurophysiologist but he never mentioned SPD. Should I re-evaluate her for that or will the occupational therapist be able to confirm the diagnoses? 

[PeterPan]

That's good that your ped referred you for OT!  Yes there's stuff they can do, partly accommodations and partly improving it.  No you don't need a fresh neuropsych eval for it.  The neuropsych would be helpful if you thought the ADHD + SPD was pushing over into ASD.  If she's there on the DSM criteria, then yes get a fresh psych eval and get that diagnosed.  

 

OTs really vary, so talk with them and don't be afraid to change.  I've gone through a bunch with my kids.  They're kinda like used car salesman.  They have this basic knowledge (brief program) and then they get additional training in novel therapies.  So one person will be trained in something and the next OT totally not.  They just vary.  It's almost like you need to know what you're looking for so you can know you've got a good fit OT, sigh.  Or just start in, exhaust that person's list, see where you're at.

 

There is SIPT certification that can be a good sign.  You can find that list online.  It's buried on the WP website.  Or look for someone who works a lot with autism.

 

OTs who work a lot with sensory can help lower her load, improve her ability to eat textures of food, increase her awareness, check for retained reflexes, improve tone and proprioception, talk about calming techniques, do Zones of Regulation to work on check-ins and staying more stable, etc.  Just depends on what she needs.  My dd's sensory issues affect her significantly, and she was that age (11-ish) when she started.  For her, that education, understanding what your body is doing and what you can do about it, was HUGE.  We couldn't see the patterns, and she was just a kid so she couldn't sort it out for herself.  Once she had that info, she could self-advocate and make changes.  She can explain WHY she wants her room a certain way or needs certain things.

 

Overall load affects sensory, so the severity can sort of go up and down.  It was something I didn't realize, and it can get very aggravating.  We're trying to get things done with them and they're saying they can't work today because of their sleeves, kwim?  It's crazy.  

 

My dd is very particular about her clothes, has an office with particular colors and lots lights.  She keeps it very warm, even in the summer, and has insulating curtains.  She strung christmas lights around it.  The OT helped her identify types of music that were calming.  We'll do joint compression when she's out of whack, etc.  It all fits together.

 

Really, lifestyle is considered the best long-term way to keep the SPD in check.  Weight-bearing exercise can help.  I lift weights, LOTS of weight, and it makes a HUGE difference for me.  But for teens they'll recommend yoga, pilates, that kind of thing.  Actually, teens can go to the Y and get taught to use the machines through the teen program.  

 

We did some brushing, but I wasn't very good at it.

 

I was only talking my dd here.  Her SPD is a very over-reactive type.  She over-reacts to sound too, and she's borderline for CAPD.  If sound is an issue, you might go ahead and get that screening as well.  You can do that with an audiologist.  They did the threshold limits with her too, and it's not that.  It's more how her system processes it.  My ds is the opposite, hypo-sensitive to pain, etc., and constantly seeking input.  I keep him in an astonishing amount of things trying to keep it chilled.  We did neurofeedback, which improved his overall reactivity to things like hand driers, etc.  Now we're doing OT focusing on self-regulation.  I have beads to make him a weighted blanket and haven't gotten it done.  He'll wear compression shirts.  That kind of thing.  Totally the opposite of my dd.

 

Well hopefully you'll find a helpful OT and get some good info!  :)

[Tiramisu]

I haven't had the greatest success with OT for sensory, but that's the ones we've had. As Elizabeth said, they vary a lot.

 

I've had four with SPD, the life-impacting variety. I know what it's like not to be able to get clothes on them so you can go out and live life. And I know what it's like to feel humiliated by the crazy mismatched outfits, boots in summer, sandals in winter. I believe we have finally reached the point of being confident of an affirmative response to the question, "Are you wearing underwear?" I never want to go back to the days of constant issues with shoes and clothes. Never.

 

I will say surely puberty, even the very early stages, has made a huge difference with the clothing issues. Suddenly, looking nice becomes more important than discomfort, at least to a degree. I'm finally reaching that point with my youngest. Woo hoo!

 

There also comes the ability to articulate discomfort before a major meltdown hits. OT could probably get you there sooner.

 

As someone here has talked about, SPD often morphs into anxiety later because of those signals being out of whack. Be aware, it's a physical thing, not psychological. So if you need to seek help for that someday, make sure you have a specialist/therapist/psych who gets sensory or else you might waste time and create other problems.

 

You will get through this and it will get better. Offer patience and understanding and grow a thick skin. Get whatever help you can through OT. SPD has not affected my kids as they got older in terms of what they are able to accomplish. I have one who goes to concerts wearing ear plugs and carrying a bag to throw up in in case she gets massively overstimulated. But she goes and each time her confidence grows about her ability to accommodate. The same kid might only be able to shop for 30 mins at a time but shopping isn't nearly as important as music to her. And another kid who wouldn't get dressed happily wears a uniform now, heavy, clunky shoes and all. And when she's not in uniform, she can dress rather glamorous. This is all to say, be hopeful. Things change. They grow out of some parts of it or they learn how to accommodate the SPD to accomplish what it's important to them.

Edited October 4, 2016 by Tiramisu

[Momto4inSoCal]

That's good that your ped referred you for OT!  Yes there's stuff they can do, partly accommodations and partly improving it.  No you don't need a fresh neuropsych eval for it.  The neuropsych would be helpful if you thought the ADHD + SPD was pushing over into ASD.  If she's there on the DSM criteria, then yes get a fresh psych eval and get that diagnosed.  

 

OTs really vary, so talk with them and don't be afraid to change.  I've gone through a bunch with my kids.  They're kinda like used car salesman.  They have this basic knowledge (brief program) and then they get additional training in novel therapies.  So one person will be trained in something and the next OT totally not.  They just vary.  It's almost like you need to know what you're looking for so you can know you've got a good fit OT, sigh.  Or just start in, exhaust that person's list, see where you're at.

 

There is SIPT certification that can be a good sign.  You can find that list online.  It's buried on the WP website.  Or look for someone who works a lot with autism.

 

OTs who work a lot with sensory can help lower her load, improve her ability to eat textures of food, increase her awareness, check for retained reflexes, improve tone and proprioception, talk about calming techniques, do Zones of Regulation to work on check-ins and staying more stable, etc.  Just depends on what she needs.  My dd's sensory issues affect her significantly, and she was that age (11-ish) when she started.  For her, that education, understanding what your body is doing and what you can do about it, was HUGE.  We couldn't see the patterns, and she was just a kid so she couldn't sort it out for herself.  Once she had that info, she could self-advocate and make changes.  She can explain WHY she wants her room a certain way or needs certain things.

 

Overall load affects sensory, so the severity can sort of go up and down.  It was something I didn't realize, and it can get very aggravating.  We're trying to get things done with them and they're saying they can't work today because of their sleeves, kwim?  It's crazy.  

 

My dd is very particular about her clothes, has an office with particular colors and lots lights.  She keeps it very warm, even in the summer, and has insulating curtains.  She strung christmas lights around it.  The OT helped her identify types of music that were calming.  We'll do joint compression when she's out of whack, etc.  It all fits together.

 

Really, lifestyle is considered the best long-term way to keep the SPD in check.  Weight-bearing exercise can help.  I lift weights, LOTS of weight, and it makes a HUGE difference for me.  But for teens they'll recommend yoga, pilates, that kind of thing.  Actually, teens can go to the Y and get taught to use the machines through the teen program.  

 

We did some brushing, but I wasn't very good at it.

 

I was only talking my dd here.  Her SPD is a very over-reactive type.  She over-reacts to sound too, and she's borderline for CAPD.  If sound is an issue, you might go ahead and get that screening as well.  You can do that with an audiologist.  They did the threshold limits with her too, and it's not that.  It's more how her system processes it.  My ds is the opposite, hypo-sensitive to pain, etc., and constantly seeking input.  I keep him in an astonishing amount of things trying to keep it chilled.  We did neurofeedback, which improved his overall reactivity to things like hand driers, etc.  Now we're doing OT focusing on self-regulation.  I have beads to make him a weighted blanket and haven't gotten it done.  He'll wear compression shirts.  That kind of thing.  Totally the opposite of my dd.

 

Well hopefully you'll find a helpful OT and get some good info!   :)

Thanks for all the tips. I'm glad to hear we won't need a fresh eval. I don't know if the sound per se is her issue. She said it's more the vibrations when sound is loud or if there are strobe or disco lights. Bummer to hear about the brushing, I had great hopes for that but we will see how all of this goes.  I was thinking of trying a weighted blanket for her. They are pretty pricey. 

 

I haven't had the greatest success with OT for sensory, but that's the ones we've had. As Elizabeth said, they vary a lot.

 

I've had four with SPD, the life-impacting variety. I know what it's like not to be able to get clothes on them so you can go out and live life. And I know what it's like to feel humiliated by the crazy mismatched outfits, boots in summer, sandals in winter. I believe we have finally reached the point of being confident of an affirmative response to the question, "Are you wearing underwear?" I never want to go back to the days of constant issues with shoes and clothes. Never.

 

I will say surely puberty, even the very early stages, has made a huge difference with the clothing issues. Suddenly, looking nice becomes more important than discomfort, at least to a degree. I'm finally reaching that point with my youngest. Woo hoo!

 

There also comes the ability to articulate discomfort before a major meltdown hits. OT could probably get you there sooner.

 

As someone here has talked about, SPD often morphs into anxiety later because of those signals being out of whack. Be aware, it's a physical thing, not psychological. So if you need to seek help for that someday, make sure you have a specialist/therapist/psych who gets sensory or else you might waste time and create other problems.

 

You will get through this and it will get better. Offer patience and understanding and grow a thick skin. Get whatever help you can through OT. SPD has not affected my kids as they got older in terms of what they are able to accomplish. I have one who goes to concerts wearing ear plugs and carrying a bag to throw up in in case she gets massively overstimulated. But she goes and each time her confidence grows about her ability to accommodate. The same kid might only be able to shop for 30 mins at a time but shopping isn't nearly as important as music to her. And another kid who wouldn't get dressed happily wears a uniform now, heavy, clunky shoes and all. And when she's not in uniform, she can dress rather glamorous. This is all to say, be hopeful. Things change. They grow out of some parts of it or they learn how to accommodate the SPD to accomplish what it's important to them.

 

 

The clothes thing is hard. This morning she came out in a sundress, uggs, wearing a beanie (because she doesn't like the feeling of brushing her hair) and carrying her soft bunny that she likes to feel. It doesn't bother me but I know other kids look at her funny because of it and I don't know how much longer she will be oblivious to it. I've heard other moms say puberty changes a lot of things so I'm hoping for a positive change once that hits. The more I read about SPD the more things seem to make sense. ADHD really didn't explain all of her other issues but I didn't really feel like it was ASD. 

[PeterPan]

Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World

 

Try this book