Thursday, June 07, 2007

Blindsided

Trillian wrote this today as she wrestled with information we got yesterday. I've written a couple things too, but was preparing to give an exam today, so I still need to work on articulating my thoughts.

I've been crying off and on since last night. Grieving since yesterday afternoon. Scooter's MCHAT (Modified Checklist for Autism in Toddlers) assessment yesterday at speech therapy showed him to possibly be in the mild to moderate ASD (Autism Spectrum Disorder) range. That result is so bittersweet. We've been trying to get him assessed since he was 2 and I've had concerns since he was 14-16 months and still not walking. He's 4 yrs 2 months now. It took more than 2 frakking years to get anyone to take us seriously, to actually listen to us. I am both grateful and raging. Why the hell did it take so long? Why on earth were we forced to try to become experts in developmental disorders just to figure out what therapies we could get for him ourselves without a doctor's referral? No one should have to go through this. The woman who did the assessment yesterday looked at me and said "You should always trust your gut. It's seldom wrong!" I wanted to scream "I did trust my gut! No one else would!" As if somehow we could have gotten faster treatment if only I had listened to my gut. Lady, my gut has been screaming for 2 + years and I've been listening, where the hell were you!? We saw three different pediatricians (2 US, 1 Canada) who all told us to "wait and see, he'll probably grow out of it." Three doctors it's not like we only took him to one doctor and threw up our hands for f*&% sake! And then trying to find help in a foreign country, hell just trying to figure out what help to look for, was more than a little challenging. When your son's "symptoms" don't fit the profile of anything you're finding online. When they only vaguely seem a bit similar to a few of the lesser symptoms of an ASD, what the hell do you do then? I mean, I'm not a doctor! How the flying f*&% am I supposed to know what's going on. I know I'm worried, but when I tell a pediatrician that, it's immediately poo-pooed as just the usual parent anxiety. Anyone with kids will tell you that the second you say you're worried about little Johnny to your Pediatrician, they'll pat your hand and tell you everything is fine and all parents worry. Have doctors just completely forgotten (or have they never been taught) how to observe their patients, how to gather diagnostic information that is not based on lab results? Apparently, they have and it's causing real pain and problems for their patients. I am mad as hell. I am frustrated as hell. I feel guilty as hell for not being even more of a pain in the Dr.'s ass than I already am. And I am grieving.

I know that sounds strange. He is not going to die from this. But I am grieving for what I thought was going to be his life, his path. I am grieving for how I thought his life would progress. The dreams I had for him and for us. I've let the grief wash over me, pass through me, inhabit every cell. I've allowed it in and allowed it to wallow around in my consciousness. Why? Because it's necessary. I have to mourn the dreams and thoughts of the future I had for him. It's the only way to let them go, clean them out, so they can be replaced by his new path, his reality, his new future. A future which frankly may not be all that different from the one I had envisioned but we won't know that for sure for quite some time. It's best to let the concept I had of his path and future go to allow for this new situation. So I am allowing the wallow, but Grief, you're on notice. You have approximately 12 hours left to wallow before I grab you by the scruff and chuck you out the nearest mental egress. I need to tidy up a bit in there before I put the new plans and promises of a new future in place, so I can't have you mucking about for too long.

We have a lot to think about, a lot to plan for and a lot to do in the next few weeks to help make the next few years as productive as possible. We have to figure out whether we want him labeled, which will depend a lot on the actual assessment by the Dev. Pediatrician. If we are looking at high functioning/mild, maybe not. If we're looking at moderate, maybe so. We have to determine where to live so that he gets the most support (both familial and government based) that he can possibly get. Apparently, none of his therapy would be covered in the US or Canada. So staying here doesn't help us a damn bit and we're hundreds of miles away from the nearest familial support. Treatment would cost us the same out of pocket regardless. He might be eligible for assistance in school with a label but the type of "help" he may get may not be appropriate for him. So maybe homeschooling is the best option. Tons to think about and plan for, no time for bull sh*& wallowing. So Grief, don't get too comfortable, you're not a long term guest.

6 comments:

metro mama said...

Our healthcare system leaves a hell of a lot to be desired, doesn't it.

I hope this place is an outlet for your grief. He's a lucky boy to have two such strong women behind him.

Best wishes. Julie

bubandpie said...

I remember that punched-in-the-gut feeling when Bub's speech therapist said she was referring him for autism assessment. That was a year and a half ago, almost, and we're still waiting to actually see the developmental pediatrician.

But that feeling of loss you're describing, the loss of the future you had envisioned for Scooter - that is almost certainly groundless. There are many adults being diagnosed today with autism spectrum disorders - these are educated people with families, living in the world. There is no way that Scooter has moderate autism. For every person with an autism diagnosis there are two more who are in the PDD-NOS part of the spectrum - the borderlands that both Bub and Scooter probably occupy.

And the MCHAT is designed to over-diagnose: nearly 1/3 of children flagged by it will not have any autism spectrum disorder at all. How many questions did Scooter "fail"? I just looked at it online, and I'd say that Bub would get anywhere from 1 to 8 of them "wrong" depending on how strictly I interpret the question.

You do get used to it, the a-word. And you realize that your child is learning and improving, just not exactly the same way as everybody else, and then that sense of emptiness when you think about the future starts to fade.

One of the most promising types of therapy I've read about (especially for kids like ours, on the higher-functioning end of things) is RDI. There's a ton of information about it on this blog:

http://jacobs-journey.blogspot.com/

I've found some of the ideas really helpful in terms of identifying targets to consciously work on.

Mouse said...

I think I'm mostly capturing Trillian's feelings too when I say that intellectually both Trillian and I know that this changes nothing about who Scooter is or who he will become. But that's intellectually, and definitely doesn't stop the initial gut-punching. And once my gut calms down enough that it's giving me a more accurate reading, I know that he's borderline, that the therapy that would be suggested would be exactly what we're doing, and that there's a chance that by continuing what we're doing he may improve enough to fall outside of an official diagnosis by the time we make it into the developmental pediatrician's office (though I haven't decided what I feel about that last one).

Thanks for the website and therapy info. It probably wouldn't surprise you to discover that I cope (with most things) by reading and researching.

Suz said...

I'm sorry, Mouse & Trillian. It's so hard to scream, and scream, and scream - and be ignored.

Laural Dawn said...

I'm so frustrated for both of you. I really am. There's no better word than frustration.
But, the good news is that you're starting to get answers - and having some diagnosis, whether or not it is completely accurate is a good step. I hope you continue to be taken seriously.
My dad has worked extensively with students, particularly at the grade 7/8 level, with various assessments. He has told me that in so many cases parents make all the difference.
Scooter is so lucky to have such amazing parents. But, I'm sorry you're going through this.

Aliki2006 said...

I am so sorry for everything you went through to get to this point--the frustrations and the worry and helplessness.

I would also agree that this shouldn't at all change any hopes/dreams you have for Scooter's future. I agree, it jumbles things up a bit and introduces a twist of uncertainty into the mix, but the future is not lost by any means.

We just found out this week that our son (almost 7) has been diagnosed with Asperger's Syndrome--high functioning autism. I am wrestling with my own guilt for not pushing evaluations years ago in the interest of early interventions, etc. But we chalked so much up to quirkiness and sensory issues, then wrestled with the whole label thing and it wasn't until he started school that it become obvious that his form of autism was really standing in the way of his being able to learn to the best of his abilities and that he was suffering tremendously from all the sensory overloads he experiences during the average school day.

It's tough--I know the punched-in-the-gut feeling. We're still sorting this all out. I can't even blog about it.

Hang in there...