I feel like I'm drowning
My 4 year old DS was diagnosed with "symptoms of Asperger's" Monday afternoon by a psychiatrist. DH and I were shocked, we knew there was something going on, it's why we took him in, but we never suspected anything on the Autism Spectrum. The psych actually said she would be comfortable with making an official diagnosis of AS on his medical record, but left it up to us. We decided not to at this time, so that we can pursue a 2nd opinion. We got a referral for a Developmental Pedi from his PCP, and the Regional Center (we're in CA) is sending us an application at my request. I've been scouring the internet for information, and ordered a few books from Amazon (that I saw recommended on this site).
All that has kept me busy. But the second I take a minute to think about it all, I get so sad and teary-eyed. DH doesn't want to tell anybody because he doesn't want them to treat DS differently, which I get, but I'm the type of person who has to talk about things. I've told my mom but that's it, and other than my dad, she's sworn to secrecy. Last night my youngest was sick and woke up a lot so I didn't sleep well. This morning, I just feel like I'm drowning, like there's a weight around my neck pulling me down. I took the boys for a walk and felt like I barely had the strength to push the stroller.
I don't know what to do next for him, or where to turn to. I fluctuate between accepting the diagnosis and being in denial. My husband is in different place than I am, so unfortunately we're not really a good support for each other at the moment. Thanks for reading.
Re: I feel like I'm drowning
OMG this is exactly how I felt when DS was newly diagnosed - virtually not being able to come up for a breath of fresh air.
What really helped me was making lists. I had a list for therapies to research and try (this is a multi year list), a list for more immediate dr. appointments, list for therapy stuff I needed to get - toys, manipulatives, etc, list of things to do for me (this was very important), etc. Lists helped me be organized. You will laugh but I had a list of steps to get out of bed every day.
What DID NOT help me was meds and drinking. It was great for a short term but after a while the effects wear off and you are left in a worse place.
Also - go to TACA website and request a mentor. These people were amazing and very helpful.
Finally, and this will sound crazy, but be gentle with your DH. This is a rough time and you both are processing the news differently. It is super hard when you are overwhelmed now, but later on you might regret things you can do or say. Just try to survive for the next few months while you are adjusting to your new world.
I know the feeling. It's so hard. Some days I still can't think too hard about the future; we'll deal with it when we get there. We deal with the now, celebrate the progress DD1 is making, and are still saving for college and being optimistic. Maybe someday we'll look back and think we were naive, but this is what we need to do for ourselves, and for her.
My DH also at first took the "I don't want to tell anyone because they'll treat her differently" tack. Once he'd processed things a bit, he didn't stick to that POV. It took some reading up on autism, him taking her to evaluations to see how much she struggled, and the realization that this is taking so much of our time, energy, and resources that it is inevitably going to come up. I also pointed out that I didn't think it was realistic, every time someone called and asked, "What were you doing today?" for us to pretend DD1's therapies were regular kid activities and that nothing out of the ordinary was going on.
It also helped that his sister has a SN child with much more serious medical/health issues, and so we could talk to her about things and she totally got it. My younger sister nannied for a family with a son on the spectrum, so my family at least had some reference point as well.
And ditto the lists. I made tons of lists and did lots of research. I started keeping a notebook filled just with daily updates on what I was doing, who I called or emailed, what information I found on programs, when I mailed or faxed forms and to whom, etc. Eventually I started adding tidbits of new things DD1 was doing. It kept me organized, gave me documentation I could refer back to, and when I got frustrated with the pace of things, it helped remind me that I was doing everything I could and actually was making forward progress on getting services and a treatment plan established.
GL. It's a tough thing to process. Taking action helped me get past the rawness of it. For awhile I had sobbing mini-breakdowns every week, then it was every two weeks, and now it's spaced out even more. It's been four months since we got DD1's dx.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010