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.