On the other side of that beautiful green meadow, you can just make out the sunrise through the thick fog that envelops anything it touches....I feel like finally a little fog is lifting.
We had our Referral IEP meeting on Friday and hours later the whole family (excluding dad who was out-of-town) came down with the stomach bug. As bad as I wanted to process my thoughts - I was quarantined to whatever room made the kids most happy.
fRIDAY:
I could not have asked for a better meeting or case manager [Sally].
I walked into the meeting not knowing what to expect. I was as prepared as I knew how to be and I was resting on the knowledge that DS has a future and a purpose and no matter what little events happen now, it'll be ok. I prayed for several things prior to our meeting - one of which was for someone willing to listen and understand the unique issues my little boy brings - without the need for defense of diagnosis. To my astonishment, Sally greeted me and immediately told me how appreciative she was of the information I had prepared to describe in detail the strengths and weaknesses of DS. Her words were 'I have never had anyone paint such a perfect picture of High Functioning Autism until now.' She proceeded to take me step-by-step through what I had written to make sure she understood and allowed me to expand on certain thoughts that were intriguing or left her with questions.
She GOT him. I mean, as much as you can really get it in one and a half hours - she got it. I could go on and on, but the bottom line is that she understands that he has some really great strengths, but none of those take away from the fact that he needs a preschool environment to help him first and foremost with development of Pragmatic Skills across all areas (among other things, of course).
She read about the sensory needs that are being addressed by his DT and SLP and inquired why his OT was not a part of that if he is receiving OT services. I explained about him not getting an evaluation even though some paperwork somewhere says he did & she jumped right into helping me find what he needs NOW for OT. She was the last straw in Amy's back, and now Amy-current OT is a goner. I've already contacted two good leads on OT's with strong Sensory Integration backgrounds. One of the two has all kinds of specialized training, which impresses me and I can't wait to get more information.
We hashed through different preschool options that are not necessarily all options for DS, but were options to be discussed nonetheless. We have 2 inclusive (or what I'd call mainstream) classrooms for 3 year olds in our county.... There are also part day DD classes... and Full Day AU classes. The option that everyone was telling me he might qualify for was Itinerant services, which she quickly threw in the fire because of his great need for social interaction. She doesn't think one-on-one therapy is the right fit, but made a point to tell me that a TEAM would be evaluating his needs, and while she will be there for the whole process, the team will decide. I am a part of that team & I understood and agreed with her sentiments on Itinerant services. I actually thought they were something a bit different than they are.
tHIS mORNING:
I finally got to go through my speech concerns with Jen today. She tends to dismiss my concerns as 'typical development' - but I turned it around on her today. I had a list of what other 2.5 year olds and younger (that I know) are saying/inquiring/commenting/etc.. for each category that I had a question about. She left with a lot of great notes, some great new goals, and FINALLY seemed to understand what I mean when I say DS has a really rough time with Pragmatic speech.
tHIS aFTERNOON:
We had a well check for Baby Sis and I asked the Pedi about referrals for Private OT and for a Developmental Pediatrician for DS. He didn't bat an eye at the recommendation and immediately wrote that up for me. Good news = both qualify under insurance and it looks like I won't have to shed a dime. He recommended the Devel. Pedi I wanted to call - which made me doubly happy!
The OT's can work through EI until he is discharged in July and then continue on with him after in a private setting - which he may need since we are getting a late start on [what I hope to be] proper therapy. I am sincerely hoping that the 3rd time is a charm and we will get the right person this time.
All of this, plus I feel like our team of helpers is finally coming together. I feel like Jen, Suzanne, and Ron are all people who know and are understanding DS better and are becoming great advocates for him, too. It may seem a little late - but it's not. I have learned a lot about myself through his hard 'foggy' process. It really is ok that parts of it have been really hard. I am enjoying my child like never before, and I think we just needed to get through some hard stuff to get here. Maybe the road paved before someone behind us will not be quite as rocky or rough because we've been here first. Those who went before us certainly dug out the muddy road.....
wHAT a dAY. What a weekend. What a whirlwind. Praise God. Praise God. It looks like we are at least on the right path to get DS what he needs. It'll never be easy, but it's not looking impossible at all.
2 comments:
That is AWESOME! I was worried that E would only qualify for itinerant svcs because he caught up so quickly. But I don't want to jinx it so I won't get too happy for you yet.
And *high five* on getting an OT rec. I hope the new person is an improvement.
It does sound like the picture is coming into sharper focus - his condition seems to be better defined now, your treatment options are a better fit and even the bureaucracy, ie the school system, seems improved (over the people you're dealing with at EI). Here's to age 3 to 4 being less confusing than 2 to 3!
"caught up" in a textbook, standardized test sense yes - but thank goodness they are listening to me about the generalization/practicality not being there. They see it and want to address it.
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