Friday, November 25, 2016

The Long Hiatus

It's the end of my blogging hiatus (I hope). I know some are wondering how we are doing, so apologies for my silence of words, but it's been a tough couple of months of transitions and I've had little mental energy for writing.

Our move to a new home in August and new school in September rattled our family ever so slightly and we are still trying to find our new normal. My older girls have done wonderfully and are adjusting to our new home and their new routines like champs.'s been tough. He is struggling; part of it from the transition to moving, but most of it from the transition to a new school. He's also been frequently sick, starting with strep throat in September, and he's had an illness with a fever at least once every month with several colds in between. He didn't go a full 5 days of school in a week until November between doctors appointments, sick days, and holidays, which surely slowed his adjustment to the new school.

We have been able to maintain, for the most part, Evan's swim lesson schedule and he recently had a great breakthrough and went under water on his own for the first time! Last week before going under (from the shallow end while holding onto the side with one hand), he said to Jayme, "if I don't make it will you come get me alive?". He was serious, and was shaking with fear, but, gosh, that made us belly laugh. You absolutely must find the humor in these situations, because otherwise, if I stopped to think about how my almost 8 year old can hardly swim and is paralyzed by fear of going under water, then I would become incredibly sad. We should celebrate the fact here that he CAN actually swim; well, it's more like running in the water and he can't go very far, but his instructor is certain that should he fall into a pool, he could reach the side safely. Being that drowning is a leading cause of death in people with autism, water safety is a huge concern of ours and Evan's instructor at Swim Angelfish has been nothing short of amazing.

Another ongoing success for Evan is the bus ride to and from school. The bus is his favorite part of the day, he tells me. It took a good month before someone would sit with him on the way home (Shayna sits with him in the morning), and the look of happiness on his face when that happened nearly crippled me...I thought it didn't bother him that he was sitting alone, but if you had seen his face and how proud and happy he felt when someone sat with him, well - wow, it truly made me understand how little of this kid's world I actually understand. I think he mostly zones out on the bus ride, and typically Shayna has to tell him it's his stop, or when she's not there, the bus driver has practically all the kids yelling his name so he'll get off.

Evan went through his third round of neuropsych testing this fall. Unlike the first two times (at ages 4 and 6), this testing was heavy on the academics to get a very thorough picture of his abilities and what type of learning style he needs. We are still awaiting the final report, but we had our feedback session in October; the doctor started with his strengths, which didn't last so long. His weaknesses, however, are vast. I'm sure I'll be discussing some of the findings in greater detail at some point, but let me sum it up by saying that there are several areas in which you cannot get any more to the left of the bell curve, and as much as we expected it, hearing it by a third party is incredibly difficult. The doctor - the doctor with many, many years of experience who comes highly recommended and is well known throughout the state - is a bit baffled by his language difficulties, which are significant and don't fall neatly into any current categories. Beyond his academic struggles, the doctor is concerned about his levels of anxiety and depression, and his lack of social interaction with his peers. This is what brought me to tears, not at the table with the doctor but later...later at lunch with Jayme as we took a moment to reflect on what we had heard. I'm not quite sure how I would process this information if not for my spouse; and I'm incredibly grateful that he is there to lift me up when the weight of the world gets me down.

It's interesting to me that I have some friends whose children (same age, different circumstances) are also struggling this fall. It's easy to blame the tough times Evan is having on the transitions in his life, and I do believe those are significant, but it should not be lost that he and his peers, are reaching an age where more is expected of them. The academic load is increasing; they are the "big" kids in school and are less cute then their younger school mates. Don't underestimate the cuteness factor - it is there, it exists. Just think in your own mind that if you saw a Kindergarten student having a problem, your response would be different from your response to seeing  a second grader (who is as tall as a fourth grader) having the same problem, even though developmentally the two students may be more similar than you think. The gaps between Evan and his neurotypical peers is becoming wider and more noticeable and I can't help but think that Evan would be struggling at his old school too.

So, I've been heads down just trying to get through the last couple of months. I've spent a lot of time worried about Evan; you can only smile so many times after dragging your kid to the car in the morning as they sob hysterically that they want to "quit this life". Then there are my girls; my oldest mostly shielded from the worst of Evan's emotions because she is on the bus before him, but my middle one...she has been brought to tears more than once this fall. There was a day not too long ago when I put the two of them on the bus crying, him from sadness and anger, her from sadness and worry. I thought to email Evan's teacher that day, but not Shayna's; she did not do well on  a test that morning and for the first time I was really struck by the impact that Evan's struggle is having on her. There is no way her teacher would have been aware of how she started her morning, listening to her brother cry about how much he hates his life, or understand how hard it must have been to leave him on the bus that day and start her morning as if nothing had happened.

On the bright side, our move to a smaller more peaceful house has changed my lifestyle for the better. We spend a lot of quality family time together and we laugh as much as we can. I'll end this blog with a recent conversation that Jayme had with Evan during which they were talking about whether or not Evan wants to be famous:

Evan: I want to be a famous soldier.
Jayme: You want to protect America?
Evan: No. I want to protect France.
Jayme: Why France?
Evan: I heard there was a lot of trouble going on there.