Tuesday, August 23, 2016

One Meeting Down and One To Go

If you have any family members who are disabled children, you'd understand a little of the monumental mountains one must climb and traverse in order for things to happen in their favor.  There's only so much money to go around.  For example, my oldest child, who is autistic, had to wait some 9 months to be given the ADOS assessment used to measure whether or not a child is on the spectrum.  I was expecting it to take a year.  It took us about 9 more months to meet a behavioral pediatrician, a type of specialty.  This was expecting to wait 1 year and a half.  We were fortunate to be moved up in the queue after they hired a new physician.

After working the medical fronts, I've also worked the State's end.  Finally figuring out the system, I applied and HB was accepted by the State department who then has moved his case over to a private entity who handles therapy.  His case worker tells me it takes months and sometimes patients are rejected.

Add too that that HB goes to a public school which deals with the educational aspects of his disability.  Because we were able to get the behavioral pediatrician to give a formal exam and make recommendations for more, I've made numerous photocopies and sent them to various people within the school along with requests to have him evaluated in more depth.  We had an initial meeting and the cogs on the wheels are moving.  They tell us that they have 60 days to work on assessments and making a report on their findings.  It covers everything from his speech pragmatics to gross motor skills to IQ (which we were warned about because IQ requires inferencing something which autistics naturally struggle with so an autistic can academically be top notch but on paper their IQ is all over the map).  

While they are looking at how all this effects education for him, it will end up turning into either an IEP should the assessment see an area he needs help with like fine motor skills or a 504 Plan which will ensure that he has a disability and what modifications he needs while in a traditional classroom.  I am super happy.

It's like seeing a light at the end of the tunnel.  I just don't want this extremely intelligent child who can read and performs math skills way above grade level to suffer because his emotional coping and social skills are very much below his age group.  In the end it's those pieces of his education that will end up affecting his academics if he doesn't have something in place sooner rather than later.

I also don't want him to be like last year where it was affecting his sense of self-worth.  What child wants to feel "bad" or "evil" because of their disability?  It's so hard to see that struggle knowing that he knows right from wrong or what is socially seen that way and not being able to control himself because he has such high sensory issues.

And I would love it if I found a way to make people more aware that they are surrounded by people with such hidden disabilities.  I would love to have been able to shout at people in the Church and say "Stop judging my children.  They may not look like they don't struggle, but I assure you that they do every day.  Where is your compassion?  Why must we be shunned and sent to the cry room?"

And on that note, I need to get ready for the next child: Knee who technically doesn't have a cognitive disability but rather suffers from speech disorder.  Can you imagine having so many thoughts in your head and struggle to say them?  Yeah.  That's my life.  And I'm holding onto hope that he too will struggle less.

Prayers for you if you and your family also struggle with disorders and disabilities.

Pax Christi.

4 comments:

  1. Hugs. We dealt with the testing last year. ZJ missed an autism diagnosis by a hair... They said he does have SPD, but it doesn't help him get any help as he'd need the autism diagnosis to qualify. Is a mess. We're homeschooling again now though and getting him into a new counselor so we'll see how that goes.

    ReplyDelete
    Replies
    1. Request testing again. Sounds nutty but to get Knee help we had him retested. I knew that he was having speech issues but because of age it wasn't significant enough. Moms just seem to know these things. It's the same for those on the higher end of the spectrum. They younger they are testing some things fall within in normal range even though we know that it isn't. It wasn't until the teacher's were saying that he wasn't interacting with other children at age 4 that we realized that there was even a problem. Until that point people thought it was age and emotions from moving and possibly ADHD etc. So my advice to anyone...document what you see or rather what you aren't. And demand in writing for more testing.

      Delete
    2. Oh we are... The hard part is we aren't even sure ourselves. It could just be SPD and anxiety, or not. What gets me is he actually fits the symptoms for aspburgers perfectly for a girl. Going by boy symptoms he doesn't. It's odd. But like I said, we are getting him in at a new place. Appointment is already set. We'll talk to them in a couple weeks or so and go from there.

      Delete
    3. Oh we are... The hard part is we aren't even sure ourselves. It could just be SPD and anxiety, or not. What gets me is he actually fits the symptoms for aspburgers perfectly for a girl. Going by boy symptoms he doesn't. It's odd. But like I said, we are getting him in at a new place. Appointment is already set. We'll talk to them in a couple weeks or so and go from there.

      Delete

I love to read your thoughts. Thanks for sharing!