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DD7 (8 next month) had full evals a couple of weeks ago. Some of it we expected, some we did not. We're looking at:

SPD 

ADHD 

Generalized Anxiety Disorder 

Possible social communication disorder

Language delay/deficit  

 

SPD and ADHD were dx'd over a year ago and we began ADHD meds a couple of months ago. Anxiety we began suspecting literally the day before her evals and I have no idea how I didn't see it sooner.

The language delay was completely unexpected. I knew there was some issues here and I see it now, but we attributed it to more of a social thing, or a choice to speak certain ways, or even to the anxiety. We had no idea it was actually something in itself and holding her back. 

 

Her verbal comprehension IQ score is almost 40 points below her perceptual reasoning score. The doctor said the biggest flag to a problem is the difference between the two, more than either number itself. 

 

Her adaptive functioning scores were in the 60's. The doctor wrote "much lower than expected given her above average intellectual ability and suggests anxiety and adhd related symptoms are interfering with development and daily functioning." 

 

Doctor said no autism. This was sometimes suggested as a possibility. The doctor said she can see what people were seeing when autism was suspected, but it's not. The anxiety combined with the verbal delay and the inattention is what most often is giving people this impression. She doesn't always know how to act or communicate with others and can be incredibly rigid causing meltdowns when things change, routine is not followed, or things don't go as she expects. 

 

Doctor recommends starting anxiety meds, taking a social skills class, and speech therapy in addition to ongoing OT. She also wants us to set up the IEP through the charter we go through and have DH and I attend therapy sessions. 

 

I'm feeling a bit overwhelmed from all of this, especially since some of the results were so completely unexpected. We were waiting for results to make some of the decisions for school next year, but now I still feel lost. 

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:grouphug: :grouphug: :grouphug:

 

We faced a similar surprise in our DS's NP report at age 9. He also has ADHD, SPD, and anxiety (which we knew before going in to the evaluations), but our shocker was that he has NVLD -- his perceptual reasoning scores are drastically lower than his verbal scores, so the opposite of your daughter's profile -- dyspraxia,and LDs. He has extremely low pragmatic scores as well.

 

We walked out of our meeting feeling overwhelmed and shocked. We actually expected an autism diagnosis but didn't get that.

 

Two years later, I can say that I understand a lot more now, both because I have increased my knowledge about his areas of challenge, and because I understand more of what is going on inside him when I observe his behaviors and struggles.

 

Our NP's recommendations were extensive, and we were not able to tackle it all at once, so we chose two areas to focus on. After he made some progress in those areas, we switched our focus to other things (and we moved, so it was a natural time to change up what we were doing).

 

I think your NP's advice is spot on. Working on social skills is going to be one of the most important areas, because social skills deficits affect not only the ability to interact with others but also academics (including reading comprehension). Being able to understand and contribute to group dynamics, as well as individual interactions with others, will impact not only academic but also the ability to work effectively in a job. I didn't understand all of the ways that social skills would affect DS, and I didn't understand the importance of getting social skills help, but now I consider it perhaps the most important therapy.

 

Speech therapists often conduct social skills groups. You may be able to find a place that offers both speech and OT, where you could get speech, OT, and social skills help all from the same provider. That would be ideal.

 

As you go along, you will find what works and what doesn't. You will see where she improves and where she still needs help. As she gets older, you may see some issues resolve and others become more prominent. It's going to be a journey, and you won't figure it out all at once. But you will learn along the way.

 

I know it's hard. It hurts. And it's confusing to know how to meet all of these needs. Build a good team of people helping you, so you don't feel like you have to figure it all out alone.

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:grouphug:   Sounds like they worked really hard to sort things out and now it's a lot to take in.  That SCD diagnosis is new to DSM5.  I guess you'll become our board expert as you read more about it, but it's sort of the bridge diagnosis they made between autism and ADHD.  So it's ASD-1 for kids who walk run up to the line and are missing one or two of the criteria to bump over to autism.  I guess my question with that would be will your insurance fund a behaviorist to get you the social skills intervention?  

 

Yes, sometimes it's an OT or SLP.  I'm going to suggest that because there's also the anxiety that actually moving over to a behaviorist would really help you.  Ours has come to the house and watched us homeschool and made a lot of suggestions on things to tweak, how we can do better.  So they can address the anxiety and the sensory and the social skills, all with one therapist.  It's just something to look into.  I definitely don't think it's going to be like one class.  This is a process.  

 

I'm so glad you got evals.  Will your insurance kick in and give you funding for all this?  Will you have access to an SLP or will you have to do some yourself?  That language is probably affecting a LOT of her school work, wow.  Did they diagnose SLDs as well?  

 

This is just my two cents, but I think I'd want a behaviorist and some intervention before going on the anxiety meds.  Or maybe not, your call.  I'm just saying there might be more they can do to help get that anxiety under control.  You could do that for a month or 6 weeks, problem solve, and then decide.  There might be a waiting list for the p-doc for the anxiety meds and you could do the behaviorist during that time, see how far you get.  

 

How is she doing with her ADHD meds?  Are they making the anxiety worse?  You mentioned you began suspecting anxiety before the evals and that she began meds a few months ago.  Sometimes the meds make anxiety better and sometimes they make them worse.  That would be something to talk with your ped or p-doc about.

 

Well  :grouphug: .  I'm glad you got such thorough evals and discussion, even if it is overwhelming.  The language part is hard, but now you're getting the info.  I'm assuming they ran detailed language testing as well?  When will you get the written report?  

 

It would be interesting to hear what your insurance will cover.  The law protects you with an autism diagnosis, but going with SCD, it's like you still have so much going on but not the protection of what they have to cover.  Or maybe it says in the fine print what they will cover?  It would be something to find out.  Story is SO right that you really can't go wrong pouring into social skills and language.  You're going to be tackling this with a LOT OF HELP.  You're not going to go at this alone.  Yes, an IEP is good!  It gives you more eyes on the situation, more perspective.  I'll bet you have a lot of questions about what to modify, how to do things, when things should happen, and the IEP can be very practical like that, helping you translate what you see into goals.  

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That's a lot to take in! Yeah, verbal and language are very big places to focus energy. I would definitely want to know if there is a cause for the big gap--CAPD, etc. Either way, she'll need some direct instruction in those areas, but if CAPD is behind it, then there might be additional or different recommendations.

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They have us lined up for a social skills class through the place we had the testing done. They do speech therapy where we go for OT, so I will call them tomorrow. I am going to look into a behaviorist, too. I hadn't heard of CAPD, but I will bring it up to see if it's something we need to look into. I hope insurance covers this well, I'm overwhelmed enough with the info!

 

I don't think the ADHD meds have made the anxiety worse. We didn't put our finger on that being a possibility until last minute before the evals, but once we thought of it, we could see it big time and not just from the last couple of months. I can see how it's been there since she was quite small. I suppose it's possible it's increased since going on the ADHD meds, but I'm not sure how to assess that without stopping them. The doctor doesn't think we're to a therapeutic level of meds. So it's possible when we go to the pediatrician next month we will drop the ADHD meds for now and focus more on the anxiety anyway.  

 

Thank you all for sharing and helping me make sense of all of this! I've been very overwhelmed and stressed out since getting the results! 

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They might not test for CAPD until she's older, but you can ask. They can sometimes screen for it (SCAN III).

 

My son had a little more anxiety with a not quite adequate dose of ADHD meds, but then the full dose worked great. It's weird how it works.

 

If you can see it present for a long time, even in hindsight, I would not worry overly much about the ADHD meds causing it. It's good to keep in mind, but I would not stress until you know more what all you're going to be working on and how you're going to prioritize things. 

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I did some searching through our insurance benefits. It looks like speech will be covered the same as OT has been, so a co-pay each time but otherwise covered. A BCBA would not be covered. We can't cover that OOP. But to be honest, if it really looks like we need it, one of our parents will probably help us to cover one. The therapist she wants DH and I to see at least once a month will also not be covered. 

 

 

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So your insurance will cover NOTHING for social skills?  That really is frustrating.  Sometimes you can get an OT or SLP trained in the extra things and get the services that way.  So if they cover OT but not the social skills, then you get an OT who is trained in the Social Thinking, Zones of Reg, etc.  Some SLPs are trained in Social Thinking and Zones.

 

Usually a behaviorist will meet with you once to let you see if they'd be helpful.  Sometimes you just have to make calls and ask and see what they suggest...

 

If the meds are too low, wouldn't you do the opposite and pick them up?  

Edited by OhElizabeth
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I was thinking drop them to try anxiety meds just to be hitting one at a time. She thinks the anxiety meds might be more helpful right now than ADHD and since we're not at therapeutic level anyway, not as big of a deal to switch course and try anxiety meds instead. Or we can do both or up ADHD first. I'm willing to try whatever is most likely to be best for DD. We see the doc on June 16th.

 

Unless I'm missing something in the benefits manual then no, they don't. We need to call and get them to spell it out for us what they'll cover and what they won't.

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Social skills group may be reimbursed under SLP coverage depending on how the clinic bills. I just got a call that there may be an opening for DD at a clinic where she's been on the waitlist for ages. They are not in-network for our insurance but they do bill in such a way that we might get 70% of the cost reimbursed. I don't know how it'll work given that the insurance is already paying for private speech and ABA (insurance might claim it isn't medically necessary for that reason).

 

Of course this happened right after the cochlear implant surgery and not before :glare: so we have to meet with the director to determine if the social skills group is appropriate at this time. Hopefully if the director does stick DD back on the waitlist it will be close to the top.

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I did some searching through our insurance benefits. It looks like speech will be covered the same as OT has been, so a co-pay each time but otherwise covered. A BCBA would not be covered. We can't cover that OOP. But to be honest, if it really looks like we need it, one of our parents will probably help us to cover one. The therapist she wants DH and I to see at least once a month will also not be covered.

We have behavior therapy available to us free through our county board of disabilities. She will either come to our house or we can go in to the office. We are waiting to hear from her after our intake meeting with the county last week. It is just a thought that there could be sources unknown to you. I had no idea. He also gets 2 k in funding just for qualifying.

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Social skills group may be reimbursed under SLP coverage depending on how the clinic bills. I just got a call that there may be an opening for DD at a clinic where she's been on the waitlist for ages. They are not in-network for our insurance but they do bill in such a way that we might get 70% of the cost reimbursed. I don't know how it'll work given that the insurance is already paying for private speech and ABA (insurance might claim it isn't medically necessary for that reason).

 

 

Our social skills group runs by clinic that is out of network. We pay them first and they provide us receipt with code so we can submit it to insurance. We got 70% reimbursement back for out of network. We have United Healthcare. We just submit receipts online and the check will be mailed to us.

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We paid OOP for social skills.  Look and see if anyone in your area is doing a group for that age over the summer.  I found it to be a price difference over the summer as they had more kids and the price was more affordable.  The CAPD testing we paid OOP and it was not that much.  If your insurance won't cover it, ask for the cash price.

 

We are very close to someone who has ADHD and anxiety.  They switched his meds from adhd to anxiety meds.  He has made so much progress on the anxiety meds.  I hope you have the same results.

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