Testing for DS1

[MrsC]

Good to hear!

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[Thirteen]

So much information! :/ My brain is tired.


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[Thirteen]

Testing for DS1

As of today, all the professionals on my team seem to be on the same page. Everyone has all the reports and referrals, and I am set to observe the afternoon VE class that DS1 is eligible for. I have some reservations, however, due to class size and the teacher being brand new to this class. I also have yet to get a straight answer regarding solid curriculum, despite the several goals listed in the IEP.
In the meantime, the wait list for private OT & ST continues, but I shouldn't be waiting much longer. I call a lot and ask about cancellations.

His current IEP has him listed as collaborative 1-2x a month with the SLP, which means (according to them) he doesn't qualify for direct one on one service. After my observation today and my introduction with DS1 in 2 weeks, I'm going to make my move for direct therapy through the school district. If he qualifies, as is my understanding, then he should be able to receive it one on one, even if it's only a small amount. I'm currently gathering paperwork on state laws and leaving messages with the VE Pre-K coordinator as well as the district evaluator.

On the home front, we are pushing him more and more with logic games and puzzles, questions, etc. He is such a sponge! I look forward to learning specific things we can do at home to challenge him.


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[TulipsAndSunscreen]

You're an amazing advocate, A! Way to go!

[OrionGrad]

Yes, you are such a good mom [MENTION=1497]Thirteen[/MENTION]!

[niener]

You're such an incredible advocate for your boys. Sounds like things are moving in the right direction. Go momma and go bean!!

[Thirteen]

We went ahead and enrolled him in the VE afternoon class -- after observation, it was much clearer to me that they have a good curriculum and structured activities. Why my questions couldn't be well answered prior to the observation, I wish I knew. I'm still not sure it's the best, considering his class mates have just turned 3 and are mostly non verbal, but perhaps this will be his chance to model as an older child to them. I left a message with his (new) teacher, because I need to let them know that I will simply not be pulling him out of his current classroom (in the a.m.) early to come to the afternoon class. It's just too much upheaval, and we are paying cash money for that preschool.

Paperwork for private therapy is filing today, so we should be contacted by our therapists within the next 10 days! Finally!

DS1 has been talking about sports and instruments, but I am hesitant to add "one more thing" onto our (read: MY) plates until we know the new routine and can settle in. As it stands, I take him to school, pick him up -- I will now be taking him and picking him up to two schools, and private therapy (wherever/however often). I pictured enrolling him in an extracurricular around kindergarten, but that was before I knew all of the other things we would be doing. I'm sure we will hit our stride next year, with one school instead of two and therapy, but the next 6-8 months will involve loads of car time for myself and DS2.

Parenting is no joke -- I go to bed exhausted most days, but DH is super supportive and loving, so it makes it better (even when we are both tired or discouraged). I'm glad he is their father, and my partner.


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[MrsK]

We went ahead and enrolled him in the VE afternoon class -- after observation, it was much clearer to me that they have a good curriculum and structured activities. Why my questions couldn't be well answered prior to the observation, I wish I knew. I'm still not sure it's the best, considering his class mates have just turned 3 and are mostly non verbal, but perhaps this will be his chance to model as an older child to them. I left a message with his (new) teacher, because I need to let them know that I will simply not be pulling him out of his current classroom (in the a.m.) early to come to the afternoon class. It's just too much upheaval, and we are paying cash money for that preschool.

Paperwork for private therapy is filing today, so we should be contacted by our therapists within the next 10 days! Finally!

DS1 has been talking about sports and instruments, but I am hesitant to add "one more thing" onto our (read: MY) plates until we know the new routine and can settle in. As it stands, I take him to school, pick him up -- I will now be taking him and picking him up to two schools, and private therapy (wherever/however often). I pictured enrolling him in an extracurricular around kindergarten, but that was before I knew all of the other things we would be doing. I'm sure we will hit our stride next year, with one school instead of two and therapy, but the next 6-8 months will involve loads of car time for myself and DS2.

Parenting is no joke -- I go to bed exhausted most days, but DH is super supportive and loving, so it makes it better (even when we are both tired or discouraged). I'm glad he is their father, and my partner.


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Sounds like my routine last year. K1 did 2 schools (one we paid for in the AM and then the public school peer model classroom ) and OT 1x weekly (3x weekly in summer). He also did swimming 1x weekly which was therapeutic. It was exhausting, especially when the other kids' activities were factored in.

Hold off on music. You can add it later if you feel like you have time. For kindergarten, we have him in 1 school all day with an IEP, swimming 1x weekly, and OT 1x weekly. Despite pressure from various sources, we held off on religious school this year. Now that we are in the groove, we may add it next semester but initially, we stuck with the activities that were least stressful and most therapeutic. It does get better.

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[Thirteen]

"Evaluation findings warrant dx of an Other Specified Neurodevelopment Disorder likely owing to sensory processing disorder (SPD)."

And there it is -- I feel like I somewhat know what that means, but am still like "I don't know what this means academically." I don't think we truly will until 2nd or 3rd grade.

His doctor wants a re-evaluation for speech/language and auditory processing, OT for SPD, counseling on emotional coping and overload reduction strategies (physical exercise, mostly).


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[MrsK]

"Evaluation findings warrant dx of an Other Specified Neurodevelopment Disorder likely owing to sensory processing disorder (SPD)."

And there it is -- I feel like I somewhat know what that means, but am still like "I don't know what this means academically." I don't think we truly will until 2nd or 3rd grade.

His doctor wants a re-evaluation for speech/language and auditory processing, OT for SPD, counseling on emotional coping and overload reduction strategies (physical exercise, mostly).


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K1 has SPD. Call me or pm if you have questions.

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[PrincessFiona]

Can I ask if they did the ADOS and ADIR or other tests for autism spectrum disorder? SPD is often seen as an OT diagnosis. It's not in the DSM-5. Many kiddos are later found to be on the spectrum.


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[Thirteen]

Testing for DS1

WPPSI 4th ed, WJ 3, K CPT2, NEPSY 2, and ABAS/BASC2.

The school administered a DAS 2, and based on that and conversations with me, I think he decided not to proceed in that direction.

I wouldn't be surprised if it's a comorbidity issue with ADHD, to be diagnosed in a few years. There have been many times where I personally have said "Autism?" and then it morphs into "Nope, this is something else." Some days I still get my "autism spidey sense" going off, but I think that's more about my brother and past experiences than anything else.


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[MrsK]

I have a lot to say on this and not a lot of time. The exclusion of SPD as a stand alone diagnosis in the DSM is controversial. The prevailing thought is that while many people with ASD have SPD, not everyone with SPD has ASD. SPD is often a co-diagnosis with ADD, ADHD, ASD, OCD, depression, and even giftedness.

OT (and I know these are a lot of initials but you will become well-versed in this language if you are not already) has helped K1 tremendously and will sort out whether there is an ADD/ADHD diagnosis too. K1 told me the other day that overlapping voices used to cause him to literally see the world turn to black and grey static thereby leading to meltdowns but it doesn't happen regularly any more.

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[MrsK]

He is doing spectacularly well and I have those same doubts you mentioned. He'll have long stretches of good days or weeks or even now months and I'll think that I must have imagined the whole thing, made something of nothing and put my kid in therapy. Then he'll have a few bad days or weeks or I'll discover some crazy things that he can or cannot do and I think he must have ASD and I am negligent in not pursuing further testing. I've been told by other SPD parents that it's sort of the nature of the diagnosis.

FWIW, we've had some doctors suggest that K1 might have a very high functioning ASD (what used to be called Aspergers). He might. But we haven't pursued it because insurance is paying for his OT, his OT is helping, and we got an IEP that is appropriate. As long as he's getting the services he needs and managing his symptoms well, we did not feel the need to pursue additional diagnoses.


She exclusion of SPD as a stand alone diagnosis may force parents to pursue a co-diagnosis simply for insurance reasons. In our case, we got the OT coverage for motor delays that K1 had (related to SPD/visual processing delay) and the IEP as developmental delay NOS (because the IEP was in place before his SPD diagnosis).

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[PrincessFiona]

Here we don't really see the SPD dx is why I asked. OT is helpful for all kids with sensory and emotional regulation problems, and it is recommended for kids with a variety of problems.

I was just curious with the sx he had (as well as sensory processing stuff) if ASD had been excluded.

The BRIEF and BASC are parent measures of executive functioning and emotions. You'll get a sense of whether there may be attention concerns, difficulties with flexibility, emotional regulation, organization, depression, anxiety, hyperactivity etc. usually they are filled out by parents and teachers. The DAS-2 is an IQ test for children. It is not predictive of ASD. It can give specific information about learning and memory though. The Developmental Neuropsychological Assessment aka NEPSY-2 looks at memory, language, visuospatial/visuomotor skills and does two subtests that can have some predictive value for autism: affect recognition and theory of mind. They are not in themselves diagnostic though. There are kids with ASD who perform well on these tests because they are not timed (like social interactions) and there are kids who do poorly who do not have ASD.

If there is any spider sense at all that your child might have ASD they should be tested for that. The ADOS and ADIR are gold standard but there are other screening tools. Early intervention is important, and yes, OT can be part of that. OT's work on both sensory stuff and emotional regulation.


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