We initially suspected language delays when ds was not yet 2, but because it (his language development) had been borderline and he was a "walker," our dr took a "wait and see" attitude. I was going to ask for referrals when ds turned 3, but then he spoke his first sentence (making me think he was going to have the fabled "language explosion"), we moved out of state, and I had a baby. It was another 6+ months before I finally faced the face that he was NOT, in fact, talking spontaneously, and much of the time, he didn't understand me. Not at the level of an almost 4yo for sure. People constantly assumed he was a late talker AND a year younger than he was.
After some prodding from our new ped, I got him in to childfind. Who said to come back "in a few months." He "wouldn't cooperate." (He did not understand what they were asking of him.) He did have some speech by that time, but was way behind. He was almost 4 1/2 by the time we got back in with them and found out he was very significantly delayed, and not just in speech. We also got a referral to Children's, but there was a wait, and then another 6 month wait, and then more waiting to get an Autism Disorder diagnosis. In that year of waiting, I realized that was probably what the diagnosis would be.
Here's my issue though- I still don't get it. I know he is "mildly affected." I get that he qualifies for special services through the school district, and (we think) our insurance company. But none of that helps ME! How do I cope on a day to day basis? How do I learn to set up schedules, and make picture schedules? How do I ever sit down and engage with him when he is nothing like any child I have ever played with. Yes, the dev preschool and speech therapy have helped him with talking, but I don't get it!
I want to play with him. I feel lost. I can't really play with him, only beside. I tried to do a simple craft project with him, thinking he would like it. He went crazy, wanting to run around the room with tissue paper and shrieking with glee. His 2yo sister started screaming in terror, and I couldn't get him to behave safely with scissors, (3 word, one step instruction) so we had to end that little adventure.
I started bawling and hyperventilating shortly thereafter. School has been out less than a week and I am already counting down the days until it starts back up. I feel like a failure as a mother. I keep asking for help, but I feel like no one has practical help to offer. The Autism Clinic gave me a book of "resources," but its mostly therapists, etc. They also said things like "Your OT or ST can give you guidance on that." We don't have an OT (yet) and I only met the school's ST once or twice at meetings. Ds will have someone new next year and we don't know who.
I feel totally overwhelmed. Can someone break this down for me? I'm terrified that I'm in over my head and its never, ever going to get easier. I'm afraid I'm going to fail all of my kids because I'm such a flake.
I do see a therapist regularly, and have been trying to add in exercise. Ds and I both do a GF diet, but not a bunch of biomedical stuff. Any books, websites, past discussions welcome, but also, breaking it down for me would be great too.