Thursday, March 31, 2016

Any Henri Matisse Experts?

Evan has been sick for several days, and last night as he was changing he said, "if I'm sick tomorrow I wish I could go to the sea side."

Okay. <Insert brain search here for a reference to sickness and the sea side...nope, none found>

Me: "What do you mean, Buddy?"

Evan: "You know, you go to the sea side like Henri Matisse."

Okay...not helping. Did he say Henri Matisse?

Me: "Did you say Henri Matisse?"

Evan: "Yes. He was a very, very famous artist, but you know that."

Me: "Did he paint the sea side?"

Evan: "Yes, he goed to the sea side."

Evan was done with the conversation at this point, but I was so intrigued by what he told me. I then spent some time reading about Matisse; I couldn't find any reference to the sea side nor does it appear that he painted the sea side (but I could be wrong about was a relatively short search).

So today, I asked more about Matisse...

Me: "Evan, did you learn about Henri Matisse in art class at school?"

Evan: "Yes. He was a very, very famous artist, you know. He died because he's very old."

I actually don't know, that is why I am asking!!

Me: "Did he like the sea side?"

Evan: "Yes. When he felt sick the ocean air helped him to feel better."

Huh. Art history in first grade...I had no idea.

Is Evan correct? Of course, yes - Matisse is a famous artist. But did he go to the ocean? Did he draw or paint the ocean? I haven't yet connected all the dots in this story; did Evan get some messages mixed up. Is he confusing artists? Is the art teacher actually discussing random art facts with first graders? It never ceases to amaze me what random facts can pop out of his mouth; his mind is so active but you might never know. I'll keep on digging to try to figure out what he is talking about, but any help with Matisse facts would be welcome :)

Henri Matisse Fauvism Art

Monday, March 28, 2016

Why Is Good Special Ed So Hard to Find?

This is me getting ready for Evan's IEP meeting tomorrow; it is his three year review (done on all students every three years if they stay in the system long enough, and is when the school officially re-tests any area covered in a student's IEP).

I'm fired up. I don't even know where to start.

First, a little IEP education for those not familiar with it...if you give the school an outside private report, they have 10 school days to circulate and discuss it. When the school does a report, the parents get TWO school days. This is just a clerical complaint; the real issue is, of course, Evan's particular reports.

I won't go into all the details, but I have a lot of issues with many of the things that are written. This has required phone calls to our attorney, advocate, Occupational Therapist, and Speech Therapist. I'm scouring all the evals given to me by the school for inconsistencies and discrepancies, with our advocate and private therapists doing the same. Because I am only taking the advocate with me tomorrow, I've received written notes from both our OT and SLP with comments and concerns regarding their areas of expertise.

This is Evan getting Free and Appropriate Public Education. Before we even step into the meeting, I've racked up at least 4 hours of outside consultation fees.

Why is this all so important? Where do I even start? Essentially, unless you are an expert in the area the school is testing, it is virtually impossible to find the weak links if you aren't specifically trained to do so. There are glaring problems with Evan's reports (I'll touch on one in a moment), but here is an example of how tricky this testing can become: Evan scored in the 'very superior range' in phonological memory, and in the average range in the phonological awareness and rapid naming tests. The school impression states that given his strong memory skills and his solid phonemic awareness skills, that he has the skill necessary to be learning and applying phonics and decoding skills. Sounds great, right? What they don't say is that a child with such strong memory skills shouldn't have such a gap in scores (even though the other scores were in the average range) and therein lies the processing and language problem. Confusing? Misleading? Welcome to my world. Unless I had outside help, I would never be able to sit at a table and questions their test results. I could go on, and on, and on with examples like this.

Here is one of the most disturbing parts of Evan's school testing: in the classroom observation, he was marked as Age Appropriate in the areas of attention and social/emotional. Um...excuse my language here, but this is seriously what I said to myself...WTF???? Am I to assume, then, that school is the miracle cure? One can lose their autism while at school? Why doesn't everyone go to Evan's school then?? Quick, spread the word!!

One thing we've learned pretty quickly is that people in public education often work in their own little bubble. Sure, there are team meetings, but the inability to look at the whole picture with Evan has been a problem from day one. Evan eats every day with one or two other children in a quite room...are they telling me that that is socially appropriate for a 7 year old? All 86 first graders are eating with one peer in a quite space? Hmm, I think not. Again, I could go on, but my blood pressure is rising as I type this.

So, wish me luck tomorrow. As parents, I know how much we think we've got our children's future in our hands, but meetings like this really drive this home. Evan's ability to function in society, drive a car, get a job, go to college...all of this literally hinges on decisions made for him right now. No pressure, or anything...

Saturday, March 19, 2016

It's a Constant Puzzle

Autism is so fascinating; it's adopted symbol, the puzzle piece, is no random representation...figuring out the thoughts, actions, intentions of a person with autism is truly like piecing together a puzzle. I naively thought that after Evan was diagnosed his life would become so much easier for me to understand when, in fact, it becomes more difficult over time.

On Thursday, Jayme showed Evan the trailer for Avengers Civil War for the 3rd time. Watching it, for Evan, is like Christmas morning...he is just giddy with excitement. After seeing it again, Evan came into the kitchen and said to me, "sometimes I want to punch you in your perfect teeth!".

"Whoa, Buddy", I said, "you won't be able to watch the movie if you say things like that to people - it's not o.k.".

"I'm sorry, I'm sorry, I'm sorry!", he said.

Later that night, as we were getting ready for bed, Evan was crying and saying that he couldn't watch the Avengers movie because it made him "tortured". Jayme asked him lots of questions trying to figure out what was bothering him (did something scare him?), and explained that it is all pretend.

Also during the evening, I was helping Evan in the bathroom and he misconstrued my tone of voice (which happens frequently). This morphed into him getting mad at me and stating that I was making fun of him (I was not). Unfortunately, I forgot about using the strategy we have in place to help him understand tone
                        ** there are so many rules that govern his life, and sometime I forget!**
and so the outcome of that missed opportunity meant that he was steaming mad at me for the rest of the night. I add this in because being mad, on top of feeling tortured (which we still didn't understand), left him in quite a state when he went to bed and continued when he woke up. I think he was over being mad at me, but he was super anxious the whole next morning, crying and shaking in the car on the way to school.

By late Friday afternoon, Evan was still upset about the Avengers movie and feeling tortured. Again Jayme tried to talk him through it without success. At that point, Evan started playing his imagination, and Jayme and I talked in the kitchen about what we were seeing, and this is when the light bulb went off for us in a way that I'm sure I can't capture with words. What happened between Jayme and I was a true was a brainstorming session to try to fit those puzzle pieces together because alone we were not connecting the dots. The result of our communication left us relieved at figuring out what was going on with him and truly, truly amazed at the complexities of Evan's brain. I think this is hard to understand unless you live with it, so I hope those of you that do are nodding your heads in agreement and can understand the accomplishment we felt in that moment.

Here was the problem...when I told Evan not to speak to me the way he had after watching the movie trailer, what I failed to realize was that he was not speaking those words at me, hee was speaking those words to me, and there is a huge difference. By telling him not to use those words, I banned him from being able to process them - he felt he couldn't act them out in his imagination, which he needs as part of his processing. He very literally took my instructions (what a good boy), but in doing so his brain felt tortured, because he doesn't have another skill to help him work through things. Whatever "torture" feels like to him, he was experiencing it - how sad is that. For 24 hours, his brain was consumed with the need to process the information he had seen, and he couldn't do it.

CRAP!! I wanted to slap myself in the head...I mean, will I ever get this right? It's exhausting having to always think about how you word things, and what your tone is, but I'm pretty careful and this slipped right by me.

Once we had this figured out, Jayme went immediately to Evan and interrupted his play to tell him it was o.k. to use those words in his imagination. Evan said, "but I'll get into trouble". In a way that Evan could understand, Jayme explained that he would not get in trouble.

Evan hasn't complained about feeling tortured since.

Wednesday, March 16, 2016

Lunch Time

One day maybe I'll start a FB page for my autism blog, because I've got all these little funny and crazy things that happen almost daily that are not worthy of a full blog post, but are things that I'd like to share. Here is one...
I've got Evan home sick today and I asked him what he wants for lunch. He said, "it's got cheese and two pieces of bread - one on top and one on bottom". "Grilled cheese?", I asked. "YES! I couldn't remember the name of it!", he replied.
This morning we discussed Egyptian history, using words that included 'hieroglyphics', but he can't remember what you call a grilled cheese sandwich. If my life were an episode of the Big Bang Theory, I could envision Sheldon saying that he doesn't see the reason to store such a frivolous fact in his brain. Too bad there are no comedy writers living at my house as the material is endless...

Wednesday, March 2, 2016


I've been a little radio silent recently...we just have a lot going on and I've been uninspired. As I type this, though, I am watching Evan have a tantrum in the living room because he is mad about a newly introduced protocol. I hate, hate, hate this part of parenting. While it's true that Evan does not bang  his head with nearly the frequency or velocity that he did when he was younger, he now has words that cut my heart just as deep. His go to phrase in the current tantrum is, "why is this happening to me!!".

Why, Buddy? Because I made it happen. And, I'm sorry. Sort of.

Let me catch you all up...
A stereotypy is a repetitive movement that a person is able to control but technically serves no purpose. Arm or hand flapping is the most common autistic stereotypy that is referred to in mainstream literature. Any parent of a child with autism will tell you that these movements do, in fact, serve a purpose, and Jayme and I strongly believe that for Evan.

Evan's stereotypy is something that he calls "my imagination". It looks like this: a boy playing his imagination. If you look closer though, you'll hear a scripted narration with large, loud movements that often take up a large amount of physical space. 6 months ago we were unable to interrupt him once he got started, but he does tolerate interruption now. He does, however, have to finish the story if he gets interrupted. So, if you stop him to take a shower, he has to go back down to the one space in the house that he does his imagination and finish his script. This is not uncommon in kids with autism (and yes, I realize that all kids play in their imagination but you are going to have to trust me that it is different in these guys) and is often used as a self-regulatory technique (which is the case with Evan); it can also be used to escape social demand (as in, having to interact with other Evan's imagination, he isolates himself and is in his own little world).

Why are we trying to control this behavior? This is where it gets tough for me. There is a whole school of thought within the autism community that you just let people be who they are - your kid has to flap, let him flap. I constantly battle within myself the balance between trying to respect Evan as an individual versus teaching him life changing skills, and this topic is no different. We actually want Evan to have a self-regulatory technique that he can access on his own; however, Evan's imagination is becoming quite dysfunctional. It has gotten to the point where Evan does not have any other preferred leisure activity; he is either watching TV  (or playing video games), or he is doing his imagination. He will play with Jayme, but not with me. Fortunately, we have lots of therapy that breaks up this routine, but his need to play his imagination is really taking over his life.

Recently, we went to my sister's house for the day; usually, we stay for dinner and go home close to bed time. For the first time, I had to leave before dinner because of Evan's behavior...he needed to play his imagination but was not comfortable doing it at my sister's house. I held him off for about 2 hours, during which time he cried intermittently and clung to me; when my girls and their cousin reached a natural break in their play, we packed up and called it a day. Unfortunately, once we got home, it was dark, and Evan needs to start his imagination during the day, so this caused an intense rage that took us a bit to move past. I think it was about 5 hours from his first request to leave my sister's to when he was finally doing his imagination, and by the time he was at a happy place, I was ready to bang my head into the floor.

What do we do about this? Well, we try to control the behavior by limiting when and where he engages in his imagination, hence the new rule that Evan is so mad about. He must now ask if he can play his imagination, and I am to give him a token to keep in his pocket or near him when he plays. At this point, he will always be allowed to play, but soon we will start to shape that behavior by asking him to engage in a task that he does not prefer, or, if we are out of the house, we will say that he has to wait to play. There are times in public that he will separate himself from the family or his friends and start playing; while this might not look unusual when you are 7, it will look unusual soon, not to mention that fact that it is not socially appropriate to leave your friends so that you can play by yourself when you are doing something like having an ice cream at the local dairy (this has happened before).

Knowing that it is important to change a behavior does not make changing it any easier. I first gave Evan his new rule last night after his therapy was over and when I knew he needed time to decompress and play his imagination. That went as well as you can imagine and he cried himself to sleep. Today after school I again reminded him of the new rule, and well...he broke down and I started writing. I had to let him cry for 12 minutes because I am taking data (this is my 3rd round of data collection regarding this behavior, so if you ever wonder why my laundry doesn't get folded or the house cleaned, know that 13 hours a week of ABA is demanding for me as well as for Evan). After 12 minutes, I scooped him up, reminded him of our new rule and that I was here to help him, got him a snack and put on SpongeBob. After a bit, while I was typing the paragraphs above, I heard an ever so faint, "Mom, can I play my imagination?".

Yessssss!!!!! <Insert fist bump here>

Sure thing, Buddy, I said, and took him his token. I'm now finishing this blog as I'm tucked a little off of our living room while taking data. Emotionally, I've gone from a pretty low place at that start of this blog, to wishing I had someone to high five right now. I wish I could explain the stress of parenting a child like this (maybe another blog in the future) - the highs and lows are frequent and consuming. After a night like last night (Evan's tantrum was at the end of having people in my house for 3 1/2 hours for therapy that I was present for while trying to feed us all and help with homework for my girls), I feel like I'm in a funk and find it hard to focus and be productive. There is only 2 hours of therapy tonight, and already Evan is in a better place, so here is where my optimistic side comes in to play and I think, yep, we are going to get through this.