On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Wednesday, March 30, 2011

Thanks Temple Grandin!

If there are six degrees of separation between you and a person with an austim spectral disorder (ASD) than you need to watch Temple Grandin.

I watched the movie with the kids' bioaunt who is schlepping at our house during the busy season for us window cleaners. We laughed, giggled, cried, got frustrated for Temple and haven't stopped talking about it. The first ten minutes of the movie I was riveted, it was like watching AB! So amazing.

Things I've taken from the movie as a mom of ASD kiddos:
1. "different, not less" a quote from Temple and her mom. I believe this about my children and exude this philosophy but I don't verbalize it publicly which is just the same as saying out loud, "different AND less". I need to be even more vocal about it.

2. Never stop telling your kids the truth, never stop teaching, never stop being honest and fair, never stop advocating, never take second best. When you think your child isn't soaking it up, they are. And one day, your child may come back around and repay you by acknowledging your efforts or even better, pay it forward. But don't hang your hat on that outcome. It's the exception to the rule. Keep plugging away because it's what is right as a parent of a challenged child.

3. Even though Sissy has PDD-NOS on her charts, she's still VERY different from AB and Temple Grandin's issues,so much so that I am still ready to fight and say that she's not PDD-NOS after all. She's just never had the same concerns as AB, ever. Even AB doesn't match up to Temple Grandin's autism. He does not have that level of intellect in addition, when I score him on psychometric evals, he always scores as HFA (high functioning autism) but the docs list him as Asperger's because he's so verbal. Why is he so verbal? Because of the F-G syndrome. See, it's puzzling. There are too many variables to make a succinct Dx and then make therapy plans based on said Dx.

That said, it's time the mental health community began to acknowledge that all our different levels of Autism just need to be thrown out. It's a spectral disorder, just like FASD. ASD should be the final Dx for EVERYONE on the spectrum. In fact, the kids' pdoc said this what is coming down the road in the next few years for the DSM.

3. Most importantly, how does ASD connect to RAD? Ah... the meat of the blog. Yes, eventually it all comes back to Sissy, doesn't it? Story of my life, of OUR life.

In the 50's, when Temple was first diagnosed, the psychiatrist told her mother that the autism was actually infantile schizophrenia and that it was thought that it was early developmental bonding issues between the infant and the mother. Of course, Temple's mom was on that like white on rice. She hadn't been disconnected from Temple, her daughter simply wasn't connecting back in like kind. Temple didn't hug her mother until she was an adult working on her masters. RAD. RAD! my friends.

Here's a little nugget that I uncovered a few weeks back when I was going through records to take to the pdoc for AB. The initial psychology report I did, including the 500 insane pages of pyschometric evaluations (ok, more like 45 but felt like 500) was a RADQ. I remember being annoyed. Sissy was the RAD, not AB. In that instant, as I poured over the file of documents I have for AB, I recalled the whole scenario.

I did the RADQ for AB, he scored 8 out of 50, not diagnosable for RAD. I asked the psychologist about it at the review and the good doctor told me that it's standard procedure to check developmentally delayed (DD) kids for RAD, that many DD score as RAD because their challenges make it difficult for them to understand social constructs, human relationship and may have sensory issues that prevent them from being able to be touched. Of course, AB hasn't got those concerns. He's got attachment in spades, maybe my most attached kiddo, even over WG (who has always had some anxiety issues when I'm not around that started at birth - but I can manage it, talk her through it and it's never been an impediment to her well being or our relationship.)

So as I watched the movie, I was astonished. Of course Temple would have been perceived as a RAD, even though she wasn't dissociated from her mother. She admits herself as an adult in the movie that she doesn't understand how people relate and that touch is painful and that she can't be fixed.

Enter Sissy's recent confounding Dx of PDD-NOS (currently presumed to be the highest functioning form of ASDs) and the fact that whenever she is discharged from RTC we are on our butts for mental health resources because she no longer qualifies for those services and I had an AHA! moment. Perhaps a portion of Sissy's RAD is her ASD. To quote the staff from the psych floor at her last stay in December, "She's a tough case. We can't figure out where the RAD stops and the PDD-NOS begins."

So why is Sissy so tough? Because with or without an ASD issue, she's still a class 5 RAD. Seeing her for the first time today after three weeks of hospitalization, we had minimal touch, she rarely gave me her eyes, we sat at opposite sides of the therapy room, isolating ourselves from each other, she didn't notice my drastically different haircut (I've cropped it!) and she was aloof and distant emotionally, an altogether flat affect regarding me.

Of course, that means we have a snafu when she discharges. With no more access to mental health resources, she'll come home unsupported and I'll still have a RADish with dual diagnoses. Where does RAD stop and DD begin? Does anyone know? I don't think that's a quantifiable answer. Can Sissy be healed of her RAD? Again, with DD confounding her issues, the answer has to be, No. not entirely.

Right now the plan is to get in with LIPT and hopefully get both AB and Sissy on a DD waiver which is simply a different funnel of resources that are billed to medicaid. Think of Plinko on "The Price is Right" You drop a coin from the top and it trickles down to the bottom and to whatever prize category it lands in but the catch is all the pegs in the middle of the board bounce the coin around helter skelter. This is how resources for challenged kids work. There are lots of funnels for resources for every category of need but you have to drop a bunch of Plinko coins down the medicaid shoot before you land in the prize category you're searching for.

How do you avoid this nonsense? You can't. And even as I type this I know it's still a crap shoot as to whether or not LIPT will benefit Sissy's case or if we can get both AB and Sissy to qualify for the DD waiver. The one thing I HAVE learned in all of this is that when it comes to waivers, you aren't going to have your child's needs adequately served until you have the right Dx. And getting the right Dx often takes years because it takes that long for your child's needs to fully emerge as they progress (or don't) through development and puberty. It's all easy to say but not easy to live with, especially if you have a class 5 raging RADish to contend with. We want answers NOW. TODAY. INSTANTLY. With DD, MH, RAD and ASDs, there's no "instant".

I am the mother of a class 5 RAD with dual diagnoses that will never be healed. I can wear this hat with confidence for as long as Sissy can be in our home without raging. If only all the world of challenged people was made up of highly motivated and confident persons like Temple Grandin.


Dana @ WhatWereWeThinking? said...

This might be asking a lot - but I'm "newish" to your blog and definitely new to the acronyms - have you made a post explaining what the different acronyms stand for?

I'm a navy wife, so I'm used to speaking in "code" & even have to do with with my son's genetic disorder - but this language is a new one for me.

Cyndi said...

I hope you win the prize (services that work) for both of them). We are is the DD waiver mess here in our state and it sure is a mess. We got one kid on it and one on a wait list That leaves us in limbo and I don`t like it one bit.

Jamey... said...

I read through this whole post just wishing that you were telling me over a cup of coffee so that I could get up and hug like 12 different times. Also because I want to see your haircut...

Elizabeth-Anne said...

AMEN, sister! Praying for you. Praying for us. Praying for all on this horriffic mental health roller coaster in which we wonder whether or not any of us will live to see tomorrow. God is good... We're not dead yet... Sometimes that's all I can say.

Tara - SanitySrchr said...

I look forward even more to watching the movie!

Lisa said...

What's the point of "early intervention" when there is so little that can be done until the kids develop or worse, don't develop? I had my almost 17 yo son evaluated for DD at 10 mos. when he first came to us in foster care. He improved so much in the first month he was at our house that he didn't qualify for services (big mistake), but then plateaued and needed to be evaluated again at 18 mos - when he did qualify. His whole life he's been on the fence-qualifying for something for awhile, then being discharged because they say he's improved (he has always developed steadily - at his "own" pace) and then a year or so later, back at crisis level again. It's crazy how everything is a crapshoot. Our kids need things that will BENEFIT them NOW and keep them from getting to the next level of dysfunction, not wait until we're all falling apart before anything happens. It's all about a system that's supposed to help but is more reactive than proactive.

jen said...

Love that movie. My mother in law had us watch it before we got Kim( who has 'autistic like tendencies'). It was a wonderful inside look at the world of autism, even if it was just a glimpse.