Please talk to me about an SPD dx

[LovnMyBoys]

I've been lurking here as my boys both have an autoimmune disease with my youngest recently getting a g-tube.
This area though is pretty foreign to me. My oldest has always had sensory needs. He is the one the refuses to wear most clothes because of seams, tags, material, buttons zippers (you get the picture). He is also a very anxious kid, reacts strongly to smells and various other things in his environment. He has monor fine motor and large motor delays (as in the lower end of normal not outwardly obvious), and has minor speech articulation issues that we have managed to address and work on.
We have always had difficulty getting his attention if he is doing something without directly standing in front of him and asking him to focus on us. This is becoming a bit of a concern to his teacher. That and his fine motor skills related to drawing, cutting and printing. His reading and ability to sound words out for writing is above average for where he should be, but the written work is messy, challenging and a big frustration to him.
I have purposely avoide reading about SPD because it allowed me to live in the "my child just has interesting quirks" world, but now that his teacher has some concerns I have done some research. All I can say is that going through all of that information explains so much about my child. Right down to adressing his humming while eating and tip-toe walking when overstimulated.
Now I'm in the do we or don't we test for the formal dx. With him probably being on the milder side is it worthwhile? How do we proceed with the dx? Is it beneficial for the school to know or better to do it privately?
I'm a little lost here on how to proceed.

[SpottedFoxx]

Do you have a developmental pediatrician? If so, they would be able to diagnose it (and if you do, I'd be shocked if they haven't already). Otherwise, I'd talk to my pediatrician and go from there.

I am reading "The Out of Sync Child" and it has given me a lot of insight into my son's behavior. A friend said the book freaked her out but I can't figure out why.

DS is a sensory seeker.

[va_lkywmn]

First of all - hugs for you. It is incredibly difficult to look at your precious child and see the problems, rather than just the incredible child that you know and love. And it is tough to think about the problems they will face. But, IMO it is better to know. SPD can be helped (at least to a certain extent) through OT, but the first step is determining exactly what the problems are and what the best course of treatment is. I would definitely encourage you to find someone that truly understands SPD for evaluation and treatment.
My first round was with OT's that really didn't understand SPD and while we got improvement on certain behaviors, it really wasn't what my DS needed. So we wasted a year of work, time and copays and ended up jaded about OT. Now I have found an OT that gets my son and I think it will make a world of difference to him.
Good luck.

[Linda on the move]

Originally Posted by LovnMyBoys

Now I'm in the do we or don't we test for the formal dx. With him probably being on the milder side is it worthwhile?

Your thread title assumes that the correct dx for your son is SPD and you seem to be asking if you should have someone officially say that it is SPD.

Personally, I think these things are very, very complex and that while it sounds like your son has some sensory issues, rather than assuming that you understand what is going on with him, I would recommend a full eval to figure out what is going on with him.

SPD, by itself, does not warrant any special services from school. However, it is quite possible that something else is going on with your child that does warrant services and/or accommodation.

And just because your child is doing basically OK at school for now and you are able to figure out how to work around his quirks at home, it doesn't mean that will always be the case. Life gets more complicated for kids as they get older, and for quirky kids that can be a very bad thing.

We went privately because I felt it would be more thorough, but it took about a year (long waiting list) and cost about $2,000 (most of which our insurance paid).

I would recommend starting the eval process now rather than waiting until things are out of control, but whether to go through the school or privately depends on many factors.

[Kristine233]

SPD is a relatively new area (new as far as recognition anyways) and a lot of schools haven't heard of it and won't implement any services for it unfortunately. SPD isn't a DX in the Diagnostic and Statistical Manual (DSM) yet, which is unfortunate. It is picking up more recognition though. This means that there isn't an official dx or eval for it, an OT or dev ped may give the "dx" of it but it isn't one that is recognized as needing special services or on the DSM so any OT or related things generally aren't covered by insurance unless they bill them as something else anyways. I haven't heard of a school giving an IEP for SPD either, so while it may help the teaher and you understand I don't know that there would be more help available. I know this probably wasn't the answer you were looking for and I wish I had something more helpful there, this is one of the areas that the system is way behind in! It sucks.

Because you mention being "on the mild end" I'm wondering if you meant ASD (Autism) instead? Children with ASD usually have SPD and SPD is considered to be part of the ASD spectrum, in the same way that Asperger's is. When you talk about getting attention and speech issues those are things that are not usually put directly into the SPD category but go along with other things that may be going on. I know when I started researching all of this (back when it was still called SID, Sensory Integration Dysfunction) the lines were not clearly drawn and a lot of it over lapped, very confusing. My son was first identified as having SID and then later PDD-NOS and then dx'd with ASD. Its also possible that I'm way off base in even wondering if thats what you were referring to or read about and my whole mention of it can be ignored, lol.

As far as school or private... I adore our school but I prefer private testing for this kind of stuff. We did a school one but also did a private one with a specialist so we knew we were getting a thorough diagnosis that the school couldn't refute a year down the road. We were lucky our insurance has covered everything from the evals to the different therapy groups, OT and such but amny wont, so definitly check it out. There can also be long waits to be seen for private evals too, here it can take 6-9 months. This is another reason we had the school do it first to get a preliminary dx and plan in place while we waited for the official one from the specialist.

Also realize that services from the school and privately will be different. While my son qualifies for OT services, he doesnt qualify for in-school OT services because they have 2 different models. Educational and Medical. The structure of the school setting and the accomodations have allowed my son to function well in school, whereas in other settings the sensory stimulations may be overwhelming. The school is obviously only concerned about things that will affect school day to day, where a general OT will focus on everything including school. You need to figure out what will best serve your child and family.

I hope you can find the information you are looking for. There are a lot of parents with sensory kids here who will have great ideals for you to help at home and at school and I second the Out of Sync Child book too!

[LynnS6]

Our son has an SPD diagnosis. His SPD is mild-moderate. It's very much along the lines of dh's, and he managed OK without therapy. But when I suggested therapy, dh was all in favor of it, because he knew how hard some things had been for him.

Our ds was diagnosed with SPD, a significant delay in fine motor skills, a significant delay in Visual-Spatial integration, difficulties in motor planning and vestibular insecurity. Basically, he was overstimulated and couldn't regulate himself very well, he couldn't do fine motor skills at an age appropriate level, he couldn't make his body do what he had in mind, and he couldn't figure out where his body was in space. He wouldn't ever write or draw for pleasure.

I would say that occupational therapy is one of the best things we've done for him. He can change clothes with the seasons. He can stand to go barefoot. His motor skills are now within the range of average. He's able to self-regulate. It's difficult at times, especially when he's tired, but it's not difficult all of the time. He can use that extra energy for things he wants to do.

His fine motor skills are now low-average (OK maybe just low; he didn't learn to tie his shoes until he was 9, and he had a fit yesterday getting ready for church because the only clean church pants had a button). His handwriting is not great, but it's legible. He won an award this year at his school for writing! (They judge content, not handwriting, thankfully.) Without OT, he'd still be struggling so hard to get his ideas written that I don't think this would have happened. He's got great ideas, but those ideas weren't coming out because of his fine motor issues.

In terms of body movement, he's a ton better. Some things are still hard for him, but he can do it. He enjoys sports (he's not great, but he's not awful), he learned to ride a bike.

He's still a quirky kid. I'm about to call someone because he's pulling his hair, and I think he's got higher than average anxiety. But he's so much more comfortable in his own body that I'm glad we did it.

[LynnS6]

Oh, and proceeding, you want to look for an Occupational Therapist (OT) who specializes in sensory things. As other people have noted, it's not an official diagnosis in the DSM, so you may need to have the evaluation privately. The school will treat the fine motor issues, but not the other stuff, very often. We got ours covered by insurance under generic "Development of the Neurological System" codes. (I can look them up at home if you need them.)