Friday, August 26, 2016

The Doldrums of Autism

Days like these are when I really  need to do a Facebook page for my blog, because I've written the last two days and I don't want to inundate people with posts, but when inspiration hits I've got to go with it.

The picture above is Evan, at 6 pm, still in his pajamas.This is a day where nothing happened. Not. One. Thing. Happened.

Oh, there was the 1 1/2 hours Evan spent in his room just sitting on his bed, mad at the world because Jayme told him to remove a window blind cord from around his neck. The entirety of the rest of the day has been spent either watching TV or playing his imagination until finally at dinner time he decided to move on to video games.

I tried a dozen times to get him out of the house or engaged with me, and it just wasn't happening. Why don't I force it? Well...this is a pick your battles type of situation, and to involve him in any activity would have led to a meltdown that I didn't feel like dealing with. I've had to drag him out of the house several times this week, and because I wasn't forced for any reason to do that to him today, I opted not to. I know he needs days where he can completely decompress and withdraw. Unfortunately, these days leave me restless with wanderlust. If I could do anything today with my kids, what would I do? I haven't been to the beach yet this summer, could I make it there? Could we do an amusement park? The movies?

Boo-hoo...there are worse problems in life, but I'm home alone with a child that won't interact with me. As in - won't interact with me at all unless he is asking for food or permission to play his imagination. The house is quiet. I've cleaned the pool, folded 3 loads of laundry, cleaned a bathroom, unpacked some boxes, did the dishes; the paperwork waiting for me has been hidden in the office, inaccessible when Jayme was working today, and inaccessible now because Evan is there playing on the computer. I've reached my mental max on house things. I've binge watched Tiny House Hunters on HGTV. I had dinner at 5 because the girls and Jayme are all gone now and it's just me and an apparition of Evan floating through the house being seen only when he wants to.

This is an autism quiet day, which sounds like it could be nice, but it's just so darn dysfunctional that it messes with my head. I feel like I lack direction on these days, because even Evan's meals are all on their own weird time schedule, and I'm floating from one 'keep me busy' task to another. Thank goodness I left the house this morning to drive my middle daughter to dance, and my oldest should arrive home soon after a day with my Mother-in-law. For now, I think I'll sit for a bit outside and try to quiet my brain. before I do my one thousandth check in of the day with Evan in a bit.

Weird. This autism stuff is Just. So. Weird.

Wednesday, August 24, 2016

When the Right Therapy Becomes Wrong

Autism is the gift that keeps on giving...over time needs change, behaviors change, providers within a company come and go. As a newbie autism Mom 3 years ago, I thought my hardest struggles were over. Ha! It turns out that raising a child like Evan, much like raising a neurotypical child, requires constant effort.

So, I'm breaking up with my ABA provider. Without a doubt, the people of this company were life changing for us; under their supervision Evan became potty trained, started sleeping in his own bed, learned to tie his shoes and leave our house if there was an emergency. There were many subtle changes too, that anyone outside of our family might not notice, like the (mostly) appropriate use of "wh" questions, and increased compliance with transitions. One of the very first things we worked on was Evan's response when I call his name. Seriously. We had to teach him to respond to me. It's actually amazing to think back on the last one and a half years and see the progress that he has made.

However, starting last winter, Evan really began struggling with the amount of therapy he was having and responding very negatively to having ABA in our house. This culminated in the spring when Evan reached a point that I considered to be a crisis, and concerned me to the point that I, lover of all things therapeutic, cancelled everything to give him a break. We started adding his therapies back in slowly, but ABA continued to be a struggle.

Fast forward to this summer, where after months of waiting, Evan had his first (because it won't be his last) psychiatric appointment. I really liked the doctor, who works directly out of Mass General's autism center, and after spending 1 1/2 hours in his office I left feeling better than I had in months in regards to Evan's mental health.

Yes, I said it - mental health. My 7 year old is struggling with depression. Let that sink in...he's 7...how did we end up here?

If you think people keep autism struggles close to the vest, I'm here to tell you that mental health is even worse. I was told last spring by the director of Special Ed in our middle and high school that mental health struggles in their students is at crisis levels, that by March of the past school year 6 kids had attempted suicide. O.k., parents, lets solve this by sweeping it under the rug. Excuse me, but REALLY???! How many suicide attempts will it take before the community has an open and honest conversation about the mental health of our kids? More than 6, apparently. If 6 kids in our district got meningitis, do you think we would know? If 6 kids were hospitalized after drinking too much, would that make the newspaper? I could go on, but you get the point, right? It's time to stop pretending this doesn't exist, and I intend to make some headway on this topic in our school this year. From my perspective, I know that kids like Evan are three times more likely to commit suicide, so you better believe that his mental health and happiness is my #1 priority.

Off my soap box...the recommendation that came out of our psychiatry appointment was for a new (to us) therapy called Cognitive Behavioral Therapy. According to WebMD, "At the heart of CBT is an assumption that a person's mood is directly related to his or her patterns of thought. Negative, dysfunctional thinking affects a person's mood, sense of self, behavior, and even physical state. The goal of cognitive behavioral therapy is to help a person learn to recognize negative patterns of thought, evaluate their validity, and replace them with healthier ways of thinking."

Our doctor nailed it; Evan feels his emotions so intensely, but does not have the tools to process them, and so CBT seems to be exactly what he needs at this time. So, where does that leave ABA? Well, his provider and I had discussed transitioning him to a social skills group, so I've been waiting for that to be formed. In the meantime, we were continuing 1 time per week on maintaining his current skills. Last week, however, he reacted so badly to his therapy session that I asked for a meeting with his BCBA with the intent of changing his plan, because, frankly, I just can't keep putting him in the position that he gets so mad and upset...it is heartbreaking. Therapy is supposed to end things like self-harm, not be the cause of it, yet there was Evan in the middle of his session banging his head in anger. Yep, we are done with that.

Fortunately, our BCBA was on the same page. Unfortunately, the promised social skills groups are actually not going to happen, so it's time to part ways to find a new company whose practice area aligns with our current needs. Now I find myself with the need for not only a CBT person, but also an ABA provider; with the kids home for the summer, I've got little time to research and interview potential people/companies, so there will be a bit of a gap between services (which I know Evan won't mind, and honestly, neither will I). I've got his next neuropsych testing coming up in early September, so not only do I have mountains of paperwork to pull together for that, but I've got 5 appointments within a 3 week span to get that testing completed...you can see how staying on top of all of these issues takes A LOT  of time. It's worth every second.

I'll be honest, I do feel a bit overwhelmed by the change in Evan's therapy. His success is literally at my discretion, and that is quite a responsibility. This is not like picking your kids private music teacher; I've said it before - the skills being taught to him are literally life changing...your kid can succeed in life without piano, my kid won't be independent and successful in life without being taught specific life skills. In addition to finding him new private therapists, we we are entering school in a new town where I know nothing about any of the school based providers. Our district also has a brand-spanking new BCBA, who has met Evan only in passing and probably couldn't pick him out of a crowd. I'm glad he's excited for 2nd grade, because my stomach is in knots.

Amidst all this change, I'm just doing my best to keep moving forward. Our goal this summer with Evan has mostly been just to keep him happy and to let him be a kid in the way he knows how. Stay tuned for the next chapter in the ever evolving needs of autism...

Tuesday, August 23, 2016

We Moved...An Update

Our family has recently moved to a new town and new home, and lots of people have asked about how Evan is adjusting. I keep saying, I have to blog this, so finally...here is a brief update. I've been super busy, and relatively uninspired to write, so these thoughts are not my best.

Evan is doing great. He and his sisters adjusted to our new surroundings better than my husband and I expected. We had done a lot of ground work with Evan, taking him several times to our new house, and I really think that made the transition easier. Admittedly, we were all a bit sad to say goodbye to our last house, the only  home that Evan has known. About a week after we moved he asked me, "are we going to live here forever?". I said we were. "We're going to live on vacation forever???", he replied.

So, yes, there was a bit of a lack of understanding about the finality of our move, but that was really only a small hiccup. He has had some really tough days, but we expected that, and we moved past those with relative ease. He is super excited for his new school, which is SO interesting, and raises little red flags about his happiness to leave his last school behind (this is actually not so surprising, as I've written frequently about his school struggles). He also wants to ride the bus, and I might just let him; I'm sure I'll come back to this topic in September, but for now there are lots of conversations happening about making this possible for him.

Thanks to all of those who were thinking of us during our crazy summer of change, and who have checked in to see that we are settling well. Now I'm just trying to unpack our house, get everyone ready for school, and enjoy the last little bit of summer.