Well, hello all! It has been a minute or two since I last hopped in and wrote something. Blogspot became blogger, and my associated email address was not originally a google one, so it took a bit… I still write, and wrote my thoughts down, just not in an electronic format. I am pretty open and transparent with most things, so I also avoided posting things online for a bit. I went back to work some time ago and had to double check that things were kosher before I contributed to a blog again.
So, today, my beautiful, wonderful Cam is 12. He is now taller than me, skinny like a string bean, speaks non stop about his preferred interests, and has hit middle school. I read the blogs I posted previously and honestly, we were all in such a dark and lonely space. If I could go back and tell my younger self anything, I would provide assurances, that yes, life will get better. Getting out of the house and working again was probably one of the most significant positives in the past few years. Somehow, our family unit has come out of that dark place stronger, more united and more stable than ever before.
Cam began ABA therapy during his kindergarten year, and although there is a lot of controversy surrounding the therapy in a lot of groups, it has been a lifesaver for us. I did my research, vetted a company that aligned with what we felt ABA could do, and went from there. It took genius level planning and strategy to even get our son that therapy, and hands down, has been amazing for our family. It was like weaving an intricate series of things together to make it attainable for us. I mean, cash rate was going to run us about 1500 a WEEK, and that wasn’t gonna realistically happen.
Most insurance providers won’t cover ABA, although, I seriously think it boils down to some bigwigs looking at bottom line health costs vs. what is morally right. No one collective group.at the time had raised a big enough stink about it. I mean, if we were dealing with pediatric Cancer, it would have been expensive but somewhat covered. It would have been political suicide otherwise.
Fortunately, I did my research and found some actual laws in my state that mandate things for autism insurance coverage. I then found out that coverage for something was in my reach, as long as I got a job working for a state entity. I hunted down grant money, we spoke at public events. We met with Senators and Congressmen, sometimes by appointment, other times by pure dumb luck. ( One Senator had no clue what was in store for him when he hopped in his Lyft and guess who his driver was? THAT was serious luck, right there.) Guess what has happened in my state? Medicaid began covering things like ABA just recently, and although it doesn’t help me individually, I would like to think that my voice along with countless others contributed to finally seeing a change in the tides in regards to HOW someone with Autism is worth the investment. Us parents and caregivers can see it, but explaining it in terms of “just the right thing to do” doesn’t seem to cut it these days. So, find something that they can get behind that also makes them look good… those with Autism are worth the investment because if given proper tools, they can contribute to society in the following ways…..” Google it, you will notice a slew of articles about companies seeking out higher functioning adults like Apple, Google, Microsoft. I figure whatever way works to get things covered….at the end of the day, everyone is better for it.
I am glad these changes are happening, and that perceptions are shifting. Now that Cam is older and more self sufficient, I get to enjoy being “Mom”, instead of feeling like a fireman dousing the flames to a wildfire. Things are going to be different, but we have adapted fine. Focusing on goals, one day, sometimes one hour at a time helps, and we even talk to Cam about those goals and seek his input. We are looking at ways to allow him to self advocate. Who better to learn from than someone that is faced with the day to day challenges head on?
Things that he wants are so varied. He is still very child like in his interests, but, hello? He’s 12. He likes riding bicycles and tells me about popping Ollies on his skateboard. He wants friends desperately. We do what we can, but it seems most of his friends are really Casey’s friends. Casey is still his very best friend. He is in a special Ed classroom with a few hours a day out with general Ed kids, but it isn’t the middle school experience of a typical kiddo. I am ok with it for the most part. Middle school is rough for everyone, and I don’t know a single soul that will say otherwise!
Planning to do things has become immensely easier, and along the way, we have found people that are true friends of the family. There for a while, we were like a dumpster fire. People steered clear. We surround ourselves with a network of people, some from the special needs community, but most from outside that world. It is emotionally and physically taxing to always be in “battle mode” and it is nice to talk about things that interest us beyond parenthood.
One last thing… the pandemic. For us, it wasn’t as bad as for other people. It was almost like a “welcome to our world” moment for some of our old work associates and neighbors. After a few months, a lot of people finally understood what we were saying about the need to connect with others. We were used to being a bit isolated, so it was all status quo. We masked up, washed religiously, and went out ONLY when we had to. My work was strictly from home, but there were times when food/grocery-delivery didn’t work, or prescriptions needed to be picked up. It wasn’t often, and if you were to ask any of our friends if they would have suspected us to be living the non masked life, they would have laughed in your face. Then, my husband got ill. We don’t know if it was when he went to pick up his prescriptions, or to put gas in the car one day, but he caught Covid right when our city was spiking and running out of hospital beds. He, of course, showed symptoms first, then the rest of us came down with it. Friends, co workers, neighbors, acquaintances all contributed in a way we had never seen. I didn’t have to cook for nearly the entire quarantine, which was good, because my husband was hospitalized for a week, clinging on to life. I’m not joking, either. It looked really rough for the first 4 days. He still has lung damage to this day. My kids, they were fine after a day or two with only mild fevers. I was so tired, I could hardly stay awake more than a few hours a day. I monitored myself with a pulsoxymeter and FaceTimed frequently just so another adult could monitor me and make sure that I wasn’t going to end up passed out and unable to take care of the two children at home with me. I had some slight flashbacks to the times of my stay at home mom life and thanked the heavens above that they could make Mac n cheese, pb&j sandwiches, pop popcorn, heat and eat food deliveries and wash a dish or ten.
So, that’s an update on us. I’m sure more will follow at some point, but figured I gave you enough to chew on for a bit.
Until then…
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