Monday, September 28, 2015

Unexpectedly expected answers.

"I have no doubt that he is on the autism spectrum. Are you available to meet with the social worker today? I know we've been in here a long time, but the social worker will be able to direct you to enroll him as soon as possible in a special needs preschool and start ABA therapy."

It is so weird how this thing that I have known in my heart, in my mom-gut, was suddenly A Thing. An Actual Thing. Greg and I were expecting to have to tip-toe around the question until we couldn't stand the vague non-answers from the evaluators and have to ask, yet again, "Is he autistic?"

We prepared ourselves to hear: "It's hard to determine at this time/in this facility/setting, in 2 months, take him to xyz evaluation." Just when we had given up hope on getting an answer anytime soon, it was there.

The first 2 days were disorienting. It felt like I was walking around in a haze, imagining all of the difficulties he very well might face, and wishing I could make things easier for him. At the end of the 2nd full day I had my first, and so far only, cry. It was ugly. It was absolutely what I needed to clear out of the haze and start getting things done. It was time to start learning the acronyms, researching what health insurance covers, reviewing the materials provided by the social worker, trying to narrow down a few preschools that have autism programs.

The thing is, autism is part of Cooper. While it does not define him, it IS part of him. Some of the great parts, some of the challenging are influenced by autism. While some might see the arm-flapping as an alarming "red flag!" I see it as an indication that he is really happy or excited by something. How many of us can express our happiness so openly? The challenging parts can be really difficult to deal with on a bad day, but a lot of his challenging behavior patterns make so much more sense to us now. Hopefully with parenting therapy we can learn to calm him down and reduce the stress that leads to meltdowns.

Lots of learning ahead, but feeling grateful that our feet finally hit pavement. Time to move forward.

Sunday, September 13, 2015

Waiting.

I was trying to get Cooper to look at me this morning when I was explaining something to him. He kept refusing to look at me. I was about to give the "look at me when I'm talking to you or [insert consequence here]" reasoning to him but then it hit me. What if he gets really uncomfortable looking at someone when they're talking to him if he's autistic?

Sure, maybe it's just him being stubborn and deciding he doesn't want to look at someone, but what if I was about to get irritated over something he has no control over?

I don't know what kind of road is in front of us. I do know that I am one hundred percent burnt out on waiting. Most days are okay, but some days it feels impossible to wait another day for another evaluation that will very likely leave us with no more answers than we walked in with. The same routine we've been participating in since he was 18 months old.

We hear, "I get this feeling that something is off but I can't quite put my finger on it" from his doctors. Do you know how frustrating that is to hear as a parent? It's basically saying, "Your son might need help but we don't have enough information to actually get him the help he might need. Instead, book this appointment that will take 3 months to get into. Maybe they can help."

Most days tick by and we know that it doesn't matter if it takes a couple more months for an answer. He is our son, we will love him regardless, and he will absolutely get whatever help is available IF he is autistic. Days like today, where he spent an hour and 15 minutes sorting his colored pencils one by one, dumping them out, and doing it all over again are frustrating. His sorting and flapping and "red flags" aren't frustrating. It's the constant worry that we're not doing everything in our power to give him the tools he needs.

Today is hard. Tomorrow will be okay.

Monday, September 7, 2015

Calm in the craziness

Whew. I forgot how insanely stressed I was last time I updated this thing. Things were stressful on the parenting front for a few months. From what I've heard, this is a pretty common thing for just-turned-3-year-olds. Add on Cooper's frustrations from his speech delay and it kind of collided into this mess of stress.

Like all things parenting related, things evened out. We got through it. I need to remember that going forward.

Things are still pretty chaotic in our house right now. Greg very unexpectedly lost his job last month. We are extremely lucky because he was re-employed almost immediately. However, there is still a gap between paychecks we're currently scrambling against. His new job pays significantly less and I have to insure all 3 of us now. My employer's health insurance rate just skyrocketed. Money is tight, it sucks, but we will get through it like we always do.

Cooper is still struggling with sleep anxiety. The going-to-bed routine on average lasts 2 hours. It is daunting, but at this point it is so expected that it isn't as overwhelming as it was. On those rare nights he falls asleep instead of crying/talking/shouting forever, it is bliss.

Cooper's appointment with the developmental specialist is finally only a couple weeks away. It is just an intake appointment so we won't have "answers" but to finally be closer to another step forward is a relief.

So, rambling aside. Things are kind of crazy but for once it doesn't feel impossible. I have my family, we have our imperfections, but we move forward.