Let it snow...

The snow has FINALLY hit here in Wisconsin, and I can't believe it took till halfway through January to do so. Jack played outside for recess at school today, and decided that he wanted nothing more to do with the snow. A promise of hot chocolate afterwards got him back outside, though. :) The fresh air and outside play did us all good!

Post-holiday...

Well, I was waiting for the shoe to fall...and last night it did. Jack and Donnie spent the day with my dad while I worked, and it was Jack's first day back to school after winter break. When I got home at 6pm, it was meltdown after meltdown until bedtime. Everything was wrong, everything caused an issue. I knew it was going to happen eventually, that we'd feel the backlash from the holidays and routine upheaval...but man it's still not easy.

Parenthood.

I watched episodes 1 and 2 of "Parenthood" last night. I'd never seen it before, but people had been telling me that they do a good job of portraying a family dealing with an ASD diagnosis. Well, they were right. I cried. The moment when the parents accept that their child is different...that was so true. As a parent, your child is always perfect. But if your child has any sort of disability, you have to at some point accept that "something is wrong" and get your child the help they need. That moment of acceptance is possibly one of the most difficult things I've ever had to go through. Thankfully, as on "Parenthood", I had a supportive husband on the same page. I can't imagine going through that alone.

We had the holiday season come and go mostly without incident. Jack had a couple meltdowns on Christmas Eve due to the excitement and people involved with the party at his grandparents' house. He just gets overwhelmed by it all. We did a lot of traveling and saw a lot of family. Our routine and schedule got thrown out the window for about a week, and we're paying for it now. It takes Jack quite awhile to get back in his home groove after holidays or vacations. He and Donnie really enjoyed the holidays overall, I think. Family was very generous and the boys got some wonderful gifts. Jack's LeapPad, balance bike and hopper ball are some of his favorites, while Donnie prefers his blue dinosaur and blocks.

We had some progress with pottying before the holidays, and we were really optimistic -- once Jack even went into the bathroom on his own, took off his own pants and diaper, and went in the potty all by himself! Since the holidays he completely regressed, but at least we know he's capable!

We also switched Jack away from his gluten free diet for the holidays, and we haven't seen a significant difference in his behavior (besides the expected holiday transition). We're not going to tell his teachers at school, and then see if they notice a difference after a couple weeks back as the real test. If we don't have to keep him GF, it would be far easier for our family and our budget. And tastier...because let's face it, some things are just better with gluten (like sugar cookies...my GF ones failed).

My work schedule has gone to Sunday through Sunday, then Tues & Weds. In February, I'll be off of the every other Saturdays. I'm really loving working in a 'big girl office'. I have meetings, projects, deadlines...I'm still pinching myself and can't believe I've got a real career. I'm so excited and happy with my job, and I love my coworkers and the company I work for. Being away from the boys is hard, but it helps to have something I really love to do.

We're finally starting to start down the road to buying our first home, and that's another really exciting step. We're going to see what our taxes look like, talk to our mortgage broker, real estate agent, etc. We'd like to move back home to Middleton/Cross Plains, ideally. Charlie and I both know the schools are great, and the commute isn't too bad. It's close to family, which is super important.

All in all, it's been a busy busy time for us. Lots of good things.

Change is GOOD.

The past couple weeks have brought a lot of change into our world. We were pretty much rock bottom when we found out about losing Jack's therapy. But we picked ourselves up again and started him in with an occupational outpatient program at the hospital. Any therapy is better than none, and we'll do whatever we can for him.

We received notice this week that he'd been approved for Medicaid (state acknowledges his disability) and has been placed on the wait list for the Autism Waiver. That can take years to come to the top, but at least he's eligible! Being deemed as eligible offers us a lot more resources, and I'm so grateful to have them at our disposal. I'm not sure how exactly this will impact Jack and our family, but I know it's going to help!

We also managed to get rid of Jack's pacifiers this past week. They had started to negatively effect his speech and dental development, so it was time to do something. It wasn't as bad as I was expecting, honestly. He was so utterly dependent on them for comfort, oral stimulation, and sleep routine that I thought it was going to be a nightmare. The first few days were hard, but we offered him a specially-designed (and chocolate flavored?!) chew stick and wristbands to stop him from destroying his clothing and hands. I'm so glad the pacis are gone, as it's much easier to understand what he's saying (and he's more engaged in general) without one in his mouth. Big, big progress!

I also got some fantastic news at work...a raise and some more responsibility! I'm thrilled to have such a wonderful opportunity and to work for such an amazing, growing company. I'm happy and excited to go to work each day, and can't wait to see what the future holds. I'm proud of myself and am so grateful for the support of my wonderful family.

Things are really looking up. Now if we can just get rid of the illness bug...

Bad news.

I took about a week off from writing in order to process some bad news. We found out that once and for all, our insurance will not cover Jack's therapy. This is after MONTHS (literally since June) of back and forth with them. They'd send a bill saying that it wasn't covered. We'd freak out and call, only to be assured that it was an error on their part and that it WAS covered...so we continued therapy and thus continued racking up the bills. Our therapy providers started to get upset because they weren't receiving payment, and for whatever reason couldn't figure out how to talk to the insurance themselves, so we had to be the go-between for them. Many stressful months of this, and finally we find out that we fit oh-so-nicely in a loophole between the mandates of both IL and WI. We're living and employed here in WI, but insurance and employer is located in IL.

The frustration and monetary stress is one thing, but what really sucks about the whole situation is that Jack is now no longer receiving therapy. He still gets some at school, but that's very little. We've gotten appointments scheduled at the hospital for speech/OT/PT but it still won't come close to the 20-25hrs weekly we were getting. It also means traveling to the hospital several times a week. Donnie can come, but he can't participate like he used to. It's all just very frustrating and heartbreaking. If our providers had been more willing to fight with us, maybe we would have taken it further...but the providers just aren't willing to work with us either.

We're still not 100% sure where the money is going to fall. The insurance has stated that they'd cover their portion as a misquote (it is probably upwards of $20,000) and we'd then be liable for our copays (which is fine). We'll see if they follow through and if that's what actually happens...

Month of Gratitude

On Facebook I've been doing a November activity where I post something I'm thankful for each day. I cannot tell you how awesome it is to start each day with positivity and gratitude. This morning, for example, the boys got me up at 5:45am, Jack broke the computer monitor (should be fixable, just frustrating) and several other small annoyances occurred within a few minutes of getting up -- all before I'd had my coffee.

I was in a grumblecakes kind of mood, but when I finally got my coffee and got the boys settled and the pets fed and sat down at the computer to check emails...I had to come up with a positive, thankful message for Facebook. Thinking about all the things I have to be grateful for really changes your perspective on the day and makes things look a lot brighter -- even before the sun comes up.

I encourage everyone to take a moment to think about the good things in their lives each day. It's so refreshing.

A Day in the Life

I'm going to get a little deep for a minute here. Jack has been having a rough week and it's really had an effect on me. He'd been making such amazing progress. I'd been able to foster a lot of hope. People constantly told me they'd never have guessed that Jackson had autism because he behaved so well out in public. At home in his comfort zone his behaviors still came out, but they were mild. Things really seemed to be getting better.

Allow me to explain something...when your child is diagnosed with autism, it's not the same as being diagnosed with a disease or illness. There is no cure. It will not go away. Autism is for life. You can use therapy to manage the symptoms and work towards a 'normal' life, but your child will always have autism. So when you hear that word from a doctor's mouth, even if you knew it was coming (as I did)...you have to mourn, in a sense. You have to let go of the hopes and dreams you may have had for your child -- there are just some things a child with autism may not do or may have to do in a different way. It's not a death sentence, and I still have MANY hopes and dreams for Jackson, but I'd be lying if I said I didn't have different ones before he was diagnosed. Now I dream of him potty training. Having a sleepover. Being a part of a team. Having a job. Getting his driver's license. Things I would have just taken for granted without autism -- things I just know will happen for Donovan.

As Jack improved over the last many months, I was able to have some of those dreams again. And then this week, he regressed in many ways and it was like being physically hit. This week he has spent the majority of his time either playing PBSkids games on the computer, sitting next to his service dog Starr, or running aimlessly back and forth, back and forth from patio door to front door...while running he flaps his hands in the characteristic autistic trait, grunts, and quotes directions from his video games: "To choose a color, use the arrow keys and spacebar to select the answer. Oops! Try again! Use the mouse to move right or left." On and on. He has been refusing to acknowledge or engage with family or therapists -- essentially it's just like...he's gone. He's not here right now. I took him to have his pictures taken yesterday with his grandma, and while it appeared that he was behaving well, he wasn't "present". To get him to sit down for a pose, I had to repeat his name 5-6 times, get into his face (he wouldn't make eye contact) and physically stop him from his bouncing (stimming) to get him to even hear me. It was incredibly frustrating, because while he wasn't being naughty and it probably didn't even look like he was acting that 'different' from an outside perspective...I knew that it wasn't 'him'.

I cannot tell you how difficult it is to see your child like that and have no idea how to reach him, to bring him back. I don't know what caused this shift in his behavior. It could be due to my new job. For his whole life, I have always been here. Charlie would come and go on alternating weeks -- and that was hard to get used to for Jack too -- but I was always here. Now for a week at a time, I'm gone from morning till evening. Daddy is there, but I'm sure it's a big change for Jack. So of course a lot of guilt comes with it.

You can never forget that your child has autism. You must ALWAYS be a few hours and steps ahead. You must constantly plan what you are going to do around how your child might react, what schedule or routine it might displace, what therapy you have to be home for, what possible comfort measures you can provide to ease transitions, etc. But I found myself lulled into a sense of "normal" where that was just how things were -- that's how life is lived for us. Suddenly it got a lot more difficult, and I sort of remembered..."Oh yeah, we have autism." It's not just Jack, it's the whole family.