I have not been doing well lately. I am not sure what the answer is. Here is what I wrote to a friend last night (or early this morning) when I couldn't sleep:
Just some random midnight thoughts: after having one child diagnosed with autism, do you ever stop worrying about the younger ones? Do you ever stop examining every little thing they are doing or not doing? How do you keep from losing your shit?
Someone from Feb moms posted the WORDS their baby is saying and understanding and once again I am thinking baby is light years away from that, just like I did at the same age with Buzzy. Fuck. I have wanted 3 kids with my husband since we got married (I told him we would either have one or three, I didn't want to stop at 2). It took me 6.5 years to get over not having more kids with my ex. I don't want to do that again. I don't want to have to get used to that idea AGAIN.
But, my heart can't handle another child with autism. I am already on the damn brink.
Sorry to vent to you.
I have always been terrified of autism. It was something I worried about with each of my children. It scared me. I didn't know much about it, other than what I had read. I was scared one of my kids might have it. And, now here I am. I am living what I most feared. And some days really, really suck.
So, since I have more time than usual (my husband has been on break) I will talk about the day of Buzzy's diagnosis.
I mentioned before that I felt (sometimes) seeing the developmental pediatrician was going to be a waste and that I thought I might be all worried for no reason. Finally, November 1st came. I was looking forward to maybe getting some answers, but not knowing what it could be. I had convinced myself that my son wasn't autistic, so I had mostly stopped really worrying about that.
The doctor was prompt in seeing us, and we didn't even wait very long in the waiting room. He asked us questions about Buzzy's development and he constantly referred to all the paperwork and records he had with him. There was another person in the room, and I am sure they told me her purpose, but I can't remember what it was now. She was pretty much in and out of the room the entire appointment.
The doctor also observed Buzzy as he messed around the room. Buzzy wasn't too interested in the good doctor, but he was playing with a few of the toys and making a few noises here and there. Later on in the appointment came the tests. He had Buzzy perform some tasks, like pointing to the parts on an ugly doll's body, putting 3 shapes in a puzzle, and pointing to pictures. He failed the pictures one miserably. He couldn't point to a house when presented with 3 other options. I wasn't surprised at that, but when presented with the unmistakable evidence that your child can't do something that children younger have no trouble with, well...my heart was sinking. And Buzzy was trying so hard.
Then, the doctor said those words. "Your son has autism." People say things like "and it felt like all the air was sucked out of the room" and "it felt like I was watching myself in a movie, from far away". And it felt like all of those things. I remember thinking that I would remember this moment, in this exam room, looking out the small window to the dingy streets below for the rest of my life. And I will. I have no doubt about that. I didn't cry. I just felt numb.
The doctor continued speaking. He went over the 3 areas that he needed to show deficits in to get such a diagnosis. He had a meet 6 of 12 criteria to get an ASD (Autism Spectrum Disorder) diagnosis Only after looking at the official results did I see that Buzzy met 10 of 12 criteria - and the only reason he didn't meet the other two was because he had no speech. At this point in time, if all of the other criteria were still met, he would now have 11/12, because of the obsessive speech patterns he is exhibiting.
All in all, we spent about an hour and half in the exam room. And then we were done. We were on our own. I made some flippant comment to my husband about my bad genes and we were in the car. As we were waiting at a stoplight my husband turned to me and said. "I just want to be able to take him fishing."
That is the only time since the diagnosis that I cried. As I felt tears burning my lids, I quickly put on my sunglasses. I had no desire for the surrounding people in their cars, with their everyday lives, to see my pain. And I still feel that way. So, I have been pushing down the pain, ignoring the hurt, and continuing to put one foot in front of the other. But it is exacting a terrible price on me.
I may end up calling my old counselor. I don't have anyone here - and I don't want to find another one. I want my old counselor. Perhaps insurance will cover a phone appointment.
So, to return to the present...we FINALLY have ABA set up to start on the 3rd. Not as soon as I would have liked it, but it will have to work.
We are waiting for the results still from the stool samples. We like to joke that it's taking so long because the EPA had to be notified.
We also have put in place to get forward with more speech therapy (through the agency that handles the ABA). To say I am disappointed with Buzzy's speech therapist is an understatement. She rarely returns phone calls. Once I figured out she responds to texts, that made things more bearable. (But, during the time I didn't know that - well, it was a really big pain in the ass.) She has missed appointments quite often. And *doesn't* reschedule. I consider speech the most important of all of Buzzy's therapies. And he is getting far less than he needs - even without the rescheduling/no-scheduling. He was supposed to get speech tomorrow. She texted to reschedule to Friday (yesterday) because her husband was taking her out New Years Eve Day as a surprise, so could we move the time as well? I responded that we were going out of town to visit my sister. And no response back. Before that there was a sore throat - and I asked about rescheduling. She said she'd get back to me. Yeah, a week later at our regular appointment.
I now keep Buzzy strapped in his high chair to do speech. Before he would wander around and she wouldn't get up to follow him. I burned her a copy of a DVD from when Buzzy was seeing Nancy (at KCC) and she never watched it. I gave her a list of words that Nancy suggested we work on, because he had success with those - and she worked on all words with the B sound (because "that's all I had in this car - my husand took the other car to work"). I've asked about working on his oral weakness, maybe getting him some Chewy Tubes (or whatever they are called) or bite blocks or...and nothing. She has the ability to put in an order for these things with the state and the state will pay for them. But, she hasn't bothered. Hell, if i knew how to use those things and knew more about them, I would gladly buy them and use them with Buzzy MYSELF. But, I am not a speech therapist and I just don't know enough.
So, I am really hoping something opens up so he can get more speech. I would like him to do three times a week. I know it would help him so much. And maybe they will listen to me and work with me to best help Buzzy.