Tuesday, April 28, 2015

Insurance Woes

 I'm sorry BCBS of TX, did you just deny ABA coverage to my son? Wait, there is a glitch in the system (their words) and he actually IS covered? You have to now manually enter his benefits? Let me help you...I just got this off the BCBS website while I have been on hold with you (I know it's MA policy, but we live in MA and you have to follow our laws - thankfully the strongest in the U.S.), and your welcome, 50 minutes later:


For the Diagnosis of Autism Spectrum Disorders For Individuals Diagnosed with an Autism Spectrum 
What's Covered Medically necessary assessments, evaluations, and testing. Medically-necessary treatment services when provided or ordered by a licensed physician or psychologist such as:

  • Habilitative or rehabilitative care, including applied behavior analysis (ABA) when under the supervision of a board certified behavior analyst. ABA services require prior authorization.
  • Pharmacy care (contingent upon benefit plan inclusion of pharmacy coverage)
  • Psychiatric care
  • Psychological care
  • Therapeutic care

Monday, April 27, 2015

Robot Update

I regret to inform you that Robot has died. Apparently, I didn't provide adequate care to Robot and Robot #2 (#2 joined us yesterday and lived for only one day) while Evan was in school, and he just gave me the news. Dry your eyes and be comforted by the fact that we are now joined by Paper Shredder, built by big sister Lily. Evan told me he and Paper Shredder will be sleeping with me tonight in my room :(

Sunday, April 26, 2015

Meet Robot

Evan has a new best friend. He designed him on paper on Friday, and then he and Jayme built him from our recycling. After Evan excitedly introduced me to his new BFF, being one who always tries to spin silk from straw, I asked him if perhaps he would like to have a sleepover with Robot in his room. I never thought this would work as Evan hasn't slept in his room for months and months, but he thought about for a minute, and then said YES!  He did qualify it, though, and said that they would have a sleep over in the "freeze tag room", aka the finished attic (named when the girls were young and used the space for...you guessed it...freeze tag).

Evan and Robot have, in fact, slept the last two nights in the freeze tag room; Evan on an air mattress, Robot on a blanket with his alarm clock on and batteries charging, per Evan's directives. Evan's affinity for Robot is pretty hilarious, and he is pretty sure that Robot can come with us on vacation this summer even though he doesn't have a plane ticket.

Evan has spent A LOT of time this school vacation in imaginary play. It's amazing for us to watch, but we have to be careful because sometimes he wants others to join him, in which case you better know his unspoken rules (which is impossible, of course), and other times he wants to be alone. If you interrupt him or vary from the rules, he gets very angry...there is no flexibility within his imagination, which sounds contradictory but would make sense if you were watching him. I think his brain is making huge gains right now, but it's difficult for him because his social use of language is so far behind of where he is cognitively; instead, he can borrow scenes and story lines from TV, movies, and video games and enter a world that makes sense to him.

It's back to school tomorrow (and I couldn't be happier, which sounds so terrible but is the truth) and I'm on Robot watching duty. He seems pretty low maintenance, but I do hope I do a good job :)

Thursday, April 23, 2015

Bike Class

Every April vacation, the Autism Support Center (part of the Northeast Arc) near us offers a bike clinic for kids with autism. They have adult support staff and a huge group of kids earning community service hours there to teach and encourage the kids. The boys in my picture were helping Evan out with his pedaling and steering (the woman in the picture is our school BCBA).

It seems so simple, pedaling a bike with training wheels, yet this task is very difficult for Evan. He lacks the coordination and strength to continuously pedal; his pedaling speed is very slow walking speed...and then he gets distracted by things on the ground and will stop pedaling all together. He made 3 trips on his bike today (maybe 100 meters each round trip) - more pedaling than he has ever done. After the 3rd time, he got off and said, I think that is enough for today.

Next year we'll go back in hopes of getting him off of his training wheels. Before we left there was a boy that learned how to bike on his own, and watching his progress and the tireless efforts of the two volunteers that ran next to him the whole time just warmed my heart; I'm so very thankful that programs like these exist.

Evan was thrilled by the 45 minutes we spent there, and on the way home he said, that was the best bike class I ever did hear.  Ah...the simple joys of an April vacation planned around home ABA and speech therapy, and a bike clinic. :)

Thursday, April 9, 2015

Behind The Scenes

I just came from an elementary band concert and I saw a fellow autism parent there who was with her son for his first band concert. As I watched her, this friend of mine, I was thinking I bet there is no one else here, except for her husband, who knows how hard she is working right now. To an unsuspecting observer, she looked like a Mom with her son. To me, she looked like she was paying attention to his every word and body movement...to his very aura, if you will. This is what I call the Behind The Scenes of autism.

It deflates me when I'm somewhere with Evan and people say, "he looks like he is doing so well". Yes, thank you, he is doing so well, but what you don't see is how hard I have to work to keep it that way. I monitor his environment and his body language constantly to avoid any potential trouble, and this task is exhausting. I have to do it at home too, though it is much easier in our own space, as most of our variables are known.

When I saw this Mom I knew how hard it was for her. She stopped by to say hi, and I told her she was doing a great job. I hope she heard me...I hope she understood that I meant it, and that I probably don't understand the whole of her struggles but I get where she is coming from and how hard this night probably was for her. I understand how risky it was for her to let go and allow her son to have his moment on stage with his band. I felt her stress and how on edge she was. I understand that the hurdle they jumped tonight was on a whole other level, and I hope next time that hurdle doesn't feel so high.

I told this Mom that she was doing a great job because that is what I want to hear. When I make it look easy, remember that it usually is anything but, and more days than not I feel like I'm not doing enough. It might look like I'm putting this puzzle together with crazy glue, but it's more like washable school glue that will fall apart at the slightest breeze.

So, to all the super hero parents out there that I know...keep up the good work. YOU are doing a great job :)