Testing for DS1

[Thirteen]

Testing for DS1

I'm feeling better today: I am trying to get him into a SLP for a private evaluation and possibly privatized therapy (1-2x week for the language delay). Jumping through hoops and red tape, another 10-12 week wait list. I'll be calling daily - I want to be proactive.

My parents think that school is good for him, and he will continue to grow and develop in a school setting. I agree with this. I am reaffirmed that keeping him in his private preschool and their curriculum (although spendy) was the better decision over local VPK programs.
I'm glad that I trusted my instincts and pushed for testing.

I am now deciding whether or not to mention the dev. delay to his school, or just wait and see. They are already so very good with him.

Your support and kind words are very humbling to me, and I'm so thankful for this place.


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[SoonerTexan]

You are awesome. As is Bean. N still misses him very much!


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[Pollyanna]

Thank you for the update! I'm glad you are feeling better and sound like you have a good plan going forward. If it were me Id likely hold off on telling his school since they already are so good with him.

[admin]

I'm really concerned by your description of the testing and how they communicated the results. I'd encourage you to find a pediatric neuropsychologist. We do two two hour sessions with the little ones so it is more manageable. Mom isn't in the room because that way we can capture the child's attention. A neuropsych can do all intelligence testing and look at any autism? As well as receptive/expressive language issues.

Kris


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[diggitydot]

I'm really concerned by your description of the testing and how they communicated the results. I'd encourage you to find a pediatric neuropsychologist. We do two two hour sessions with the little ones so it is more manageable. Mom isn't in the room because that way we can capture the child's attention. A neuropsych can do all intelligence testing and look at any autism? As well as receptive/expressive language issues.

Kris


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Agree entirely.

Also, unless they did an IQ test that doesn't heavily rely on language in order to do it, the results are irrelevant. Once they dx an expressive-receptive language delay, they should immediate switch to an IQ test that doesn't rely on language skills.

That is an issue we had with our DS. They then attempted to tell us that he had a very low IQ because they used the wrong damn test to measure it. They were PISSED when our developmental pediatrician required them to do the different IQ test and fought us on it the entire way. Surprise, kid actually has a higher than average IQ. He just couldn't understand the language heavy test because of his expressive-receptive delay.

You are his mom and know him incredibly well. You know when something fits him and when it doesn't fit at all.

[Thirteen]

Testing for DS1

I got in with ped neuropsych for initial appt in 2 weeks. (In another city)
No one in our network sees kids, and the extended network deals only with firm ASD dx, or brain trauma/head injuries. Out of pocket, for the win... Now I'm battling insurance.

Thankful for our FSA that will help with cost.



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[MrsK]

I got in with ped neuropsych for initial appt in 2 weeks. (In another city)
No one in our network sees kids, and the extended network deals only with firm ASD dx, or brain trauma/head injuries. Out of pocket, for the win... Now I'm battling insurance.

Thankful for our FSA that will help with cost.



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You are a warrior. You've got this momma.

[TulipsAndSunscreen]

You are amazing A. Keep it up!

[Thirteen]

We had our initial appointment yesterday. Lots of paperwork lots of questions about medical history pregnancy history family history, etc.

The doctor recommended at least six hours. We will be breaking the testing up into one hour increments. We are on the books starting next Thursday.

I am still processing a lot.


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[scrub-jay]

One hour blocks sounds far more reasonable. We'll be thinking of you!

[Meenah]

You are such a wonderful MOM!!!!!!

[OrionGrad]

You are such a wonderful MOM!!!!!!

+1 You are amazing.

[MrsC]

One hour sounds a lot better. Thinking of you!

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[rufflesanddots]

+1 You are amazing.

Yup yup!! Thanks for the update. Hang in there!

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[Thirteen]

Our ped office is making everything so much easier for me, and have drafted a letter to the insurance agency. The insurance company has now changed their criteria (apparently today), and require additional documentation from his school showing that he "needs" this.

... He's in preschool. Private preschool. The local school district spearheaded the initial eval, and told me the results probably will not be tallied for several weeks. I left two messages and am waiting on a reply. Even if they do have the results ready, I'm not sure the insurance will agree. They are now saying they need all this to "help me choose what kind of specialist I need". That's not what they said before, and quite frankly, I'm not sure I want them to potentially choose the provider (out of network, mind you) for me. Maybe that's a protective and defensive position, but I am skeptical

I suspect we will have to pay everything out of pocket, to get what we want. My fingers are still crossed for even partial reimbursement, but I'm not holding my breath.

On the Homefront -- DH is calm and positive, but has used "fix it" language. I don't know. What if we can't "fix" whatever is going on, how will he approach it then? I see it as standing next to a big rabbit hole and try to do self affirming positive talk to be calm, but I am afraid. We are very different, and I am glad for that in this situation.


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