The FIRST post on my new Autism Story Page is from someone who is NOT actually a “slacker”, despite her name. 😉 Below is Erin’s story, searching for diagnosis for her twin boys, while constantly encountering the “don’t worry, they are boys” line – my question is…have we ALL heard that line? I know I have! So, here’s The Slacker Mom…Thanks Erin!
When my twins were a year old, they were just starting to talk. They had a handful of words, a few signs. Everything seemed to be going along great in other areas of development. But this talking thing. It was nagging at me, it didn’t seem like they were really catching on.
I asked every mom I knew what they thought. I brought it up at our doctor’s appointments at 12 months, 15 months and again at 18 months. I got the same line of excuses from every single person I asked about it: they are boys, they are twins, they are identical, they were premature…DON’T WORRY!
Well, I worried. By 15 months there were no new words. By 18 months there were no words at all. We wanted a speech evaluation but our pediatrician told us to wait until 2 years. So, we waited.
One day, when we were on day two of a cross-country trip to a family reunion inMontana I started to kind of freak out. These people hadn’t ever met the boys, there would be another 2 year old there. The differences would be obvious. They were going to know something was wrong. I started doing the ugly cry (30 minutes away from the reunion!) and tweeting furiously.
Finally, I got this tweet: “You don’t need a referral for Early Intervention. Call when you get home and make an appointment.”
What the what? I’ve been agonizing about this for months and I could have just called myself?
So, when we got home, I called. I made an appointment, they came to our house and started the evaluation. I was nursing my youngest in the living room, answering questions about the boys while two others played with the boys in their high chairs in the dining room. I could tell they were failing test after test. About halfway through they brought up Autism.
If it weren’t for the nursing baby and the fact that I was by myself I would have lost it. I managed to get through the next half hour and waited until everyone was out the door before I called my husband and choked out “They think it’s Autism” before I broke down. It’s one of my prouder moments- not breaking down the very minute they asked me what I knew about Autism. (Did I mention this was a week before Christmas and my In-Law’s were driving in fromVirginiafor the week?)
After that it was a whirlwind of starting school (and riding a bus!), having the “real” evaluation for Autism to get our official educational diagnosis, hearing from everyone we met about where to go, what to do, who to talk to. It was a bit crazy in the beginning.
Once the word “Autism” was spoken, there was no going back for us. Our eyes were opened wide and we knew it was real. For us there would be now doubting it, no fighting it. There were many, many a-ha moments.
In the beginning there is so much to digest, I am glad we had the public schools. I got to put them there and we saw immediate improvement. With that taken care of I was free to figure out the next steps. Do we want them in full-day private school (they are 2- they still nap!)? Do we want them to have extra speech and OT a few times a week? Do we want to get the medical evaluation? Who is paying for all of *this*? How long are we willing to wait for our first choice therapists?
We took a few months to get our ducks in a row, which was a blessing once we started getting into the nitty gritty of the medical evaluation and having the boys qualified for insurance through the state. The paperwork that comes with autism is unbelievable. I laughed when someone told me in the beginning to just get a big plastic tote to throw everything into. I don’t laugh at that concept anymore.
The application process for insurance was the hardest though. We actually went through a local advocacy agency because it’s just mind-numbingly detailed and if you don’t get it just right, you are back at square one. Having someone who can contact someone on the inside, who can check up on the process was amazing. There were two points where he called to see where we were at to find that they didn’t have any of our documentation (we started the process the week our state government went on strike). He was able to fax everything right then. If it had been us, we would have no way of knowing they were even missing because they do not give direct numbers out- INSANITY! Did I mention this is often a 6-8 month process?
Thankfully that part is over for us. As much as we needed to get that approval, it was another Big Gulp moment when the State Medical Review Team sent us the letters verifying the boys as disabled in the eyes of the state. I don’t think of my kids as disabled, most people wouldn’t consider them disabled at first glance, but they are.
Now we’re finally a few weeks into our new routine that we started putting into place back in January. Half-days in a public school Autism program, extra speech and OT at our first choice private Autism school. We’ve been through 2 rounds with an IFSP and are currently working on our first IEP. We’re getting the hang of it.
Things seem really daunting at first, like a clock is ticking and things have to get done immediately. That isn’t necessarily so. Getting evaluated, yes. Go- do it now! I would absolutely encourage anyone who has questions or doubts to get in touch with Early Intervention as soon as possible. Evaluations are free and if there are services required (even it isn’t Autism) if your child is under 3, you will get those services. It doesn’t hurt to get answers as soon as possible- if it’s nothing, think about the time you just saved yourself worrying. If it is something, think about the good things that will come with getting the needed help.
With the evaluation out of the way, I found it easier to take it one step at a time. Get over one hurdle, one milestone and then move to the next. It’s hard enough without trying to do it all at once.