Tuesday, June 30, 2015

No Days Off From Autism


We are on vacation and the day before this picture was taken I ran a full marathon in 90+ degree heat and crazy high humidity. So, here I am, lugging my 50 pound son through the rain forests of Hawaii; thank goodness that my marathon was so slow that my legs aren't even sore (or maybe my CrossFit training is paying off?). There is no rest for the weary here.

Evan has low muscle tone and poor endurance. Additionally, he only wears pants, so he gets super hot, super fast. We knew that in order to access some of the things we wanted to do on vacation that we would have to carry him, and at 50 pounds, that task becomes very difficult to do for any length of time. So, out we went to buy a baby backpack; he really doesn't fit into it properly, but the backpack was safety tested up to 70 pounds and it disperses his weight just enough to make carrying him a whole lot easier.

I did get one comment from a man about how it looked like Evan was big enough to walk for himself, but I let that one roll right off. Ignorance is bliss, after all, and since our choices are  to either make things accessible to Evan or not...well, the choice is easy.

Tuesday, June 23, 2015

Not So Happy Last Day of School

There's 104 days of summer vacation....
From Phineas and Ferb, of course. Evan started saying, "I only talk in one line", last night. Then he followed this statement with silence and a refusal to answer any questions. It took Lily overhearing this happen tonight to figure out that he is quoting Ferb, who only talks one line per episode (or so I'm told). Hysterical!! And frustrating!

Anyway, not all are happy on the last day of school as it turns out. I've got the obligatory pics of my girls, of course, thankfully taken BEFORE school and the frightful news that the middle one has the worst teacher in the 4th grade next fall. I had a friend snap a pic of Evan at pickup this afternoon in hopes that he wouldn't notice her take the picture and therefore not freak out about it. I tell myself that he probably won't care that I don't have first and last day of school pictures each year for him when he is older, which is both sad and liberating at the same time.

The day started for Evan with me manhandling him into the car to get to school (again, thank you CrossFit for giving me the confidence to know that I am still stronger than him). The day ended not much better. Evan I can deal with, but I feel bad for my girls because it ruins the joy they had at ending the school year. It took two hours to get Evan to leave the house after school to go to our annual last day of school make-your-own-sundae trip; frankly, I didn't think it was going to happen at all, so a two hour delay is not that bad in the scheme of things.

Call me a glutton for punishment, but I keep waiting each year for things to get easier. Often, though, they get harder, and I know that this end of school year time, while happy for most children, can be torturous for kids like Evan. The change in routine, the change in teachers, etc., etc....it can be incredibly overwhelming. Evan has tried 3 times today to bite Shayna, and his home therapist found him biting himself. Really?!

So, despite all those happy photos on Facebook and cool end of year treats made by overachieving parents (I say with jealousy), not all parents and kids are enjoying this time of year. And, 'happy summer', actually means 'happy summer until summer school starts the first week of July, but with all new faces because we found all the teachers who actually want to work during the summer and we are bringing kids in from all over the district'. Yep, have fun with that.

Sunday, June 21, 2015

Happy Father's Day

One of my favorites sites, The Mighty http://themighty.com/ , recently posed this question: What's a lesson your dad taught you that you will never forget? It made me think of my Dad, so here is my answer in tribute to him.

My dad is a recently retired college professor of geology, a retired U.S. Air Force Colonel, an author, a farmer. He is intelligent, quirky, kind, thrives in organized chaos, curses said organized chaos, and - my favorite - gives amazing hugs. He taught me to always try your best, never leave a job unfinished, and to be kind to other people. By watching him, I also learned to not take crap from other people and to fight for what you believe in. Here is the autism tie-in...when I was thinking about my Dad, I realized that it takes all those skills to be an ADVOCATE, and that all those lessons I learned as I was growing up have become my foundation to raise Evan to be the best person he can be and not settle for anything less.

So, Dad, I'm not saying that shoveling cow poop helped me sit through a meeting with the SpEd Director this week. I am saying, though, THANK YOU for raising me with the knowledge that we are not put on this earth to simply exist, that we can live with purpose and help others at the same time, that hard work pays off but an unfinished job rarely does.

I never thought these lessons would be needed in quite the way I use them. I thought I would compost and live simply, donate to various charities and save endangered animals, be a great P.T. and an expert in my field. And I was. I was all these things. But now I'm not...I'm high maintenance and wasteful, I care marginally for endangered species, and haven't "worked" in over 10 years. Those life lessons, though? They are more important than ever, because I have a child who won't be able to access the world unless I bring it to him. Come hell or high water, I'm going to finish that job and I'm going to do it to the best of my abilities. I will do it for him, and all the other kids like him who need it too. Just like you taught me.

Happy Father's Day, Dad. 

Wednesday, June 17, 2015

"I'm going blind!"

Evan is really struggling tonight. I knew right away when I picked him up at school that he was a bit off. His signs are so subtle, but as he approached me at pick up, like he always does, he let me hug and kiss him a bit more than usual and took several seconds to connect to the skin on my face (which he never does at school). That is all it took for me to know. I asked him then if he wanted me to carry him, but he didn't answer and we walked out to my car.

He fell asleep on the way home from school, which is highly unusual, especially since we only live 2 1/2 miles from the school. He slept through the trip from the car to the couch, from the couch back to the car, through the 10 minute drive to our high school, and through a good chunk of Lily's music lesson. He spent the rest of her lesson snuggled on my lap, acting like an extra appendage, and periodically breathing in my scent.

As we were driving home from Lily's music lesson and she was talking a mile a minute, Evan started saying, "I'm blind. I'm going blind." He had his eyes closed, so I laughed it off as if he was being silly, but when we pulled into the garage - with Lily still talking a mile a minute - he was clearly agitated.

"I'm blind! I can't focus, I'm going blind! It's because of Lily, she smells like stinky cheese!", he yelled.

Aha....it clicked. I laughed privately to myself because what he said was funny. Then I got sad, because he was beside himself and because, well, this response is just so atypical compared to a regular kid. He can make progress all day long and then - BAM - autism digs in and the gaps we have to bridge in his brain seem endless.

It was the sound of Lily talking, of course. Her tone, her volume, her fast tempo...who knows. The complaints of stinky cheese were the only words he could find that we would understand because, for a period of time, she was putting Parmesan cheese on her pasta and it was super stinky and offensive to him. Now he uses those words to complain about her, irregardless of what the offense is. In the car was a perfect example of how he lacks the language to convey his feelings and thoughts and will script, or use familiar phrases to express what he is thinking (even if they don't really fit or make sense). The whole going blind thing is a bit unclear, but I think he was close when he said he couldn't focus - her noise was setting off a sensory overload and I think it was making his head hurt, eyes included, and making his brain feel muddled.

He is currently unable to tolerate many noises at once. While watching TV a few minutes ago, Lily started talking near him and it set off a spiral of sensory confusion, to the point where he had to restart his show 3 times because he couldn't "hear it", and ultimately shut it off because it became too overwhelming to him. He took himself to his room, screamed when anyone went near him,  and gave himself a few minutes of  a time-out. He was then able to bring himself back downstairs and try the TV again and is in a much better place (well, sort of). In the face of this sensory craziness, it's actually quite amazing that he demonstrated the ability to remove himself from the situation and bring himself back when he was ready. O.k., so there was a few minutes of destruction in his room and LOTS of yelling, but progress in not always a straight trajectory.

I think the root cause of all of this is the end of the school year stress; there are lots of changes happening, lots of things to change his regular routine (like the upcoming Kindergarten Serenade they have been practicing for). I know there is a lot of head nodding in agreement out there, with many parents in the same place that we are in. This is not unexpected, but tough nonetheless.

And, poor Lily, right? Sadly, I can't tell you how badly I wanted to ask her to stop talking. This is SO unfair, but is truly a glimpse into the juggling act of our family life. Lily decided she wanted to make cake...with frosting...at 8:00 at night. Sure, I said. For so many reasons - yes, make cake :)



Thursday, June 11, 2015

Evan's First Band Concert

It was Lily's last band concert of the year, and Evan's first. The picture shows how he made it through the first 1-2 songs, then he fidgeted through another, then we left for all of the beginner band songs, then we came back in for the  2 songs of  the advanced band (Evan 'skateboarded' down the entrance ramp for a bit, then threw spells at the band but he looked like he was pretend conducting so I let it fly). THEN, we left for the bathroom, played in the hallway, and finally I left he and Shayna unattended in the hallway so I could watch the last song. Phew. My back was sore and Evan was covered in school germs (from laying on all the surfaces, floor included, of course), so we went out for ice cream. O.k., we would have gotten ice cream anyway.

I did get a funny text from the autism Mom who inspired my post titled: Behind The Scenes; she told me that tonight she had to physically dress her son for the concert and her husband had to physically move him into the car...it doesn't at all sound funny, but when I got the text I was already at the concert and had spied her tailing her son, wearing a big smile and looking so much more relaxed than the last concert. See, we of the smoke and mirrors crowd, we have to laugh or we would cry; I just knew that her text had come in a  funny moment of 'I can't believe this is my life' (though there were tears of frustration that preceded it) and that it was o.k. to laugh with her in understanding. Does that make sense? As Evan lay spread eagle with his shoes off in the hallway during the concert, I actually had the thought to send a picture of him to my friend so that she could laugh with me in understanding too; I didn't end up taking his picture then, though I wish I had. Her son, by the way, had a blast at the concert and the means of getting him there more than justified the end...thank goodness for small victories.

It was a good night for Evan too, all in all. Since Daddy was at work I had to bring him to the concert, but I set my expectations low. I did miss several songs, but I also got to see several songs and there were no melt-downs or tantrums. It's worth repeating...thank goodness for small victories (and tolerant parents, who politely ignored Evan as he was blasting them with brain sucking spells).

Saturday, June 6, 2015

Sleep Intervention, Night One

Well, this was heartbreaking for me. I provide comfort to my kids when they cry, it's how I parent. I lean more toward attachment parenting than not (what is "non-attachement" parenting called, anyway?); I breast-fed on demand, never bottle-fed, spent nights on each kids floor trying to nicely get them to sleep, Ferberized them all too and cried the whole time. So, putting Evan into his bed last night and walking away when all he wanted was to be with someone was tough for me.

Anyway, here is out it went down:

3 BCBAs (board certified behavior analysts) arrived at our house at 9pm. We kept all the kids up so that we could establish a new FAMILY nighttime ritual, so as not to make it seem that it was all about Evan. He held it together as I explained our new routine and rules, but cried the moment we were away from the therapists and headed upstairs. All the kids got in pajamas and brushed teeth; Evan didn't want to read a story (typical for him), so we all watched a kids show and announced bedtime at 10pm. Keeping him up late was part of the plan in order to be sure he was really sleepy and would hopefully fall asleep in a reasonable time frame.

There was one therapist upstairs coaching us through the process, which was great because as I took Evan to his room, he slammed the door on me and told me to leave him alone. I was advised to go in - thank goodness I did because he was about to rip his "bedtime pass", which allows him the freedom to leave  his room one time after he is put to bed - take his pass and put it outside his door, tuck him in (I had to lift him up onto his bed and pillow), and turn off the lights (which he didn't want me to do).

We stood in the hallway for a long time and listened to him whimper and thrash in his bed, but he was asleep by 10:30. Not bad!!

I'm leaving out all of the yelling, door slamming, head banging, and crying details, but it all happened which was not unexpected. I do expect tonight to be worse, as he told us he is never sleeping in his bed again, but we are committed and will follow through. Much like the potty training, we expect several days of rebellion but an eventual acceptance by Evan and calmer waters to come.

Sigh...more coffee please...

All told, we had 4 therapists and 4 1/2 hours of people in our house last night between his regular therapy and the sleep intervention. What a crazy way to live.

Thursday, June 4, 2015

Potty Training (again) - An Update

Operation Potty Train (again) has been in full force since last Tuesday (so, for 10 days), and for anyone who didn't read the blogs previous to this, Evan lost all electronics until he pooped on the potty. He held out until day 4, when he - angrily - pooped on the potty. He has been successful since then up until today when, sadly, he had his first accident. Sadder still was what he said to me when he called me over to him.

Mom, he said, sorry you have to take away my electronics.

Oh, my heart just broke for him in a million pieces. Because, he felt bad...not mad...bad, as in  - I just did something wrong and disappointed you, bad.  Had I not walked away from him for the two minutes that I did, I may have been able to get him into the bathroom on time. But he requires, at the age of 6 1/2, constant monitoring around the time when we know he usually poops to remind him to "listen to his body" and to watch his body language so that we can figure out when he is about to go. For anyone who has potty trained a toddler before, you know that we are about 3-4 years behind this normal developmental milestone. Ugh. We are a whole lot closer than we were last week, though.

He finally stopped asking for a new family on Day 8, so that was good progress. He has had an increase in tantrums and head banging, so that is bad but not totally unexpected. He sported a small bruise between his eye and nose for a few days, and that always hurts my heart because it was, most likely, self inflicted.

 Lucky for us, tomorrow is our rescheduled sleep intervention. And, heck, we might as well add fuel to the fire and make two major changes at one time. The hope, though, from a behavior perspective is that if we get compliance in one area (potty), we'll get better compliance in another area (sleep). I suppose this could totally backfire, but in for a penny in for a pound at this point.

Fingers crossed that I'm still smiling for our upcoming autism fundraiser on Sunday :)