Tuesday, July 08, 2014

diagnoses, research, hope, part 1

Yes, actually, almost all my posts involve grief, and, therefore, are tagged as such.

The last really long conversation I had with my brother was about my niece, Q, his daughter.  He had picked me up from the airport.  We headed for home so that he could attend a childhood friend's funeral.  It was a foreshadowing I could not appreciate at that time.

For years, at this point nearly 14, we (my sister, my mom and I) had tried to impress on my brother the need to get help for my niece.  She showed delays in speech and communication as a toddler.  She also displayed some odd behaviors.  And she suffered seizures as an infant and toddler that were never connected to a specific medical condition.

Probably because my brother was an independent contractor and did not have health insurance, she was not under the care of a primary caregiver.  Perhaps if that had been the case, "professionals" would have also impressed upon my brother and sister-in-law the importance of getting to the root causes of all three of the above mentioned conditions.

Finally, after about 3 years, the comparisons to other children could not be ignored.  FINALLY, they took her to the "Regional Center" to get some help.  My brother was so touchy about it all - over the years, our insistence on getting Mija more helped waned as we were told in subtle and not so subtle ways that she was not our child.

I tried many, many times to get him to see that she needed more than what she was getting in school.  Maybe I didn't ask the right, pointed questions -- like "Can I see her IEP?"  But I offered to pay for special tutoring over the summer.  I allowed that I would let them pick the person.  I just wanted to capitalize on the fact that one year she had a terrific teacher who knew how to reach my niece.  My sister-in-law has always been prickly with us and super over-protective of her kids, so none of us ever approached her ... that I know.

So, that February day, in the car, on our hour long ride along the coast, I pressed the case, again.  Mija, already 14, is unable to read and write.  How will she take care of herself?  I know he was seeing the danger more clearly than ever before.

I thought I felt a glimmer of hope because he was engaging and asking questions.  I thought I saw a wistful look in his eye.  Maybe I was making it up.  But we never got a chance to talk about it again.  I saw him one more time for a few days in Las Vegas, and then he was gone.

Now I approached my sister-in-law about it earnestly.  It was probably not a great time to press the case, my brother's shadow and his loss still cast over our landscape. 

But, time was running out for us to get her re-evaluated.  I insisted on going to the school to find out what kind of grief support was available for the kids.  I wanted to ask in front of my sis-in-law so she could mirror my actions later if needed. 

I had only one week with them following the funeral.  I needed to get so much done with her, bank accounts, and insurance claims and changing dmv records.   Now she doesn't even recall that meeting in the school psychologist's office. 

I saw an opening and asked what the diagnosis they had on record for my niece: "globally delayed."  I countered that it was not a real diagnosis -- the psychologist agreed that it would not qualify her for SSI or to stay at the high school for the extra three years that other special ed kids would get.  Yet, Q is in a self-contained classroom doing first grade level reading and writing ... per her IEP not necessarily her ability. 

When I asked what we needed to do to get Q re-evaluated, the psychologist said we needed to get back to the Regional Center. My sis-in-law said as soon as things calmed down she would call them; after all, she already had a relationship with them.  My hands, tied once again, were unable to do anymore.  I had to trust that I had impressed upon my sis-in-law the urgency.  Q was already a sophomore at that point.

A year went by, and then nearly another ... in between both my little sister and I had once again approached my sis-in-law about a diagnosis.  We had a long talk about autism, what it looks like and what kind of help is available.  She admitted that she was wary to do battle with the Regional Center on her own, I offered to go with her to the meetings.  I gave her my availability.


I have always had to measure how much to push because I know that we need to do more for Q and how much pushing will make me persona non grata.

Then, the miracle happened ... and we can thank Obamacare (hope there are some trolls out there that end up reading this).  I insisted when my brother died that the family would get health insurance even if I had to pay for it.  It is expensive for folks who don't get it through employment -- but without it there is no long-term care.  It does not exist when you only go to the doctor for emergencies ... even if it is to the same doctor.

My sis-in-law had to change providers at the beginning of the year, and her first visit with their new PRIMARY CARE PHYSICIAN (in caps because it is a wonderful, beautiful thing!).  This doctor wanted to talk with Q and when the responses were not what she expected, she looked at my sis-in-law and said, are you getting help from the Regional Center?  A new door was opened because it was coming from someone outside the family.

I don't care how it happened... next to do battle with Regional Center.

[I started this post weeks ago and just had the time to finish it ... the prelude to the next part is that the battle is full on with the Regional Center ... FULL BATTLE MODE, like looking for lawyers kind of battle...]

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