Friday, December 11, 2015

(Un)Happy Birthday

Sometimes autism is so weird. Well, most times it's weird but we've learned to deal with it. There are days, though (like today), where I wish I could turn Evan upside down and shake this craziness out of his head.

Today is his birthday. Yeah!! Right?

Not so much.

Birthdays have always been hard for him, and days like Mother's Day or Father's Day. Some holidays too, but not all. Halloween this year was a bust. I don't even think I can put into words how days like today work for Evan, because honestly I don't have it quite figured out yet. When it's someone else's birthday, there could be some jealousy at play but I think that is a fraction of what bothers him; my guess is that the structure of the day is changed and it feels different to him (and not in a good way).

Evan has not been looking forward to his birthday. If you ask him, he'll tell you it's because Lily was loud on her birthday (two weeks ago) and woke him up and that ruined the day for him. He was unable to move past this, and as I planned for his birthday he told me he didn't want to do anything, go anywhere, see anybody, and so on. Finally, by this past Wednesday he was getting excited for his birthday and decided to have sugar cookies instead of cake and that he would like to go out for dinner. Progress!!

Fast forward to this morning: he was the last one awake and so the rest of the family was waiting at the stairs to say happy birthday as he made his way down from his room. He - silently- looked at us with a grumpy face and kept on walking. I laughed, shrugged my shoulders, and said we'll try again in a few minutes.

A few minutes later, he was happier and ready for presents; the rest of our morning routine went off without a hitch. UNTIL we got in the car to go to the bus, and then he got mad and started complaining about how Lily was noisy and ruined his day. He ended his rant with this: "thanks A LOT Lily!!".

Lily got on the bus, laughing and shrugging her shoulders, and I redirected Evan with thoughts of sugar cookies and drove him to school. I have no idea how his school day went, though he doesn't like attention so I'm guessing the birthday wishes drove him nuts, but he got upset again at pickup and was crying in the car because of unwanted attention by someone who wasn't even giving him attention. Again, I redirected with sugar cookies, listing for him all of the different types of sprinkles I used.

Jayme and I read once, in an account of a 13 year old with autism, that when a memory is retrieved in an autistic brain it is re-lived as if it were happening right that moment; the memory doesn't work correctly. We believe that this is what is happening to Evan. Unfortunately, the memory of Lily 's birthday is attached in his brain to his birthday and when he thinks about it, it literally leaves him in a state of despair. The incident this afternoon was similar in that the sight of a person who caused him stress in the past triggered acute anxiety and feelings that have no current basis in reality.

Craziness, I tell you.

We are off to dinner and maybe a trip to the book store. And, because I'm the one who pushed the birthday boy out of me without drugs, I am treating myself to cookies (o.k., I made some for me too), and wine, maybe a new book...ice cream possibly too - I mean, we drive right by so it would be a pity not to stop...

Wednesday, December 9, 2015

Therapy In His Own Words

Evan typed this about therapy last night:


The drawing underneath the words, I think, are supposed to emphasize the "meanie" part.

Funny, yes, but I've had to listen to him wail the last two afternoons about how he hates therapy, why does he have to do it, when is it going to end, and on, and on...

Today, we had to skip our lunch plans because of this. I'm not sure how much hearing Evan cry about how he hates his life bothers my oldest, but it cuts my middle one to the core, and so as I was trying to manage him I was worried about her. And him. And me, because I hate this part.

So no one thinks that Evan is tortured during therapy, trust me when I tell you that is it not that bad. Though there is some work, like shoe tying and hand washing and conversation skills, there is also a lot of playing...nerf gun wars, board games, silly role playing exercises. Unfortunately, play is hard for him, and 2 1/2 hours of talking and following directions is not how he would choose to spend his night.

I LOVE that people tell us all the time how great he is doing. I love it, but I HATE how hard it is sometimes for us to get there. Evan's struggles? They are mostly reserved for me. I am on the front line of the battles as his primary caregiver and his enemy was brought into his life by me. I walk him calmly into the hands of his therapists and console his tears as best as I can, hoping...hoping this is worth it.

Now, as he enters the last half hour of his session, I hear him happily playing football with his therapist. I'll let that fill the hole left in my heart from earlier, and propel me into tomorrow.




Tuesday, November 24, 2015

The Kindness of Strangers Who Became My Friends

I met this amazing autism family in 2013 and now I'm sort of like their stalker. I follow the lives of this family on Facebook, we email intermittently and see each other even less, and I share their story at any chance I get. Connecting with other families that live with autism is truly a gift, and I cherish my new found friendships within the autism community. This amazing autism family, though? They gave me light when my life was shadowed in darkness.

The way I met this family actually was pretty stalkerish. I saw the Dad at a running expo and noticed an autism logo on his sweatshirt...then I followed him. I don't usually follow random people, by the way, but in the moment I felt totally compelled to do so. I caught up to him quickly and asked him about his sweatshirt; he kindly told me what it was from and then I told him why I was asking.

See, my son had been diagnosed with Autism Spectrum Disorder the previous month, and though the diagnosis was welcome after so many years of struggle, I was leaving the honeymoon period and reality was setting in - you know, the what the hell does this really mean reality. Once I told the Dad that my son has ASD, he stopped his wife and two adult twin boys who are both severely autistic and introduced them. They were at the running expo to pick up the boys numbers because they were running the marathon.

Wait, what?!

I thought: I'm running the marathon too. And, marathons are hard. HOW are your boys, with severe autism, going to run a marathon?

I've been running my whole life and I am not naïve to scenarios in which the most unlikely runners complete marathons, but at the time I was thinking about my son and how he bangs his head so hard that his nose bleeds and I was trying to make the leap from that to where these incredible boys can run a full marathon. In the briefest of moments, the Mom and Dad told me how they figured out the boys liked to run when they were in their teens, and now the family runs together (with guides and the occasional behavioral therapist, which is SO neat) and the boys LOVE it.

And then I started to cry.

Let me be clear that my son does not have severe autism and I will never know the emotional and physical struggles of this family, and I was aware of that then. What I didn't know, and still don't, is what my son's talent is, where his passion lies...at the time I couldn't even get him to tell me he was hungry, and so I was in awe (and still am) of the parents that stood before me that had figured this out for their boys and then overcame obstacles to make it possible for them.

They showed me light.

In that moment I knew that until I could find my son's passion (and probably even after I do)  I would use my own legs for a greater purpose, and I have - running at least one race a year to raise money for autism. Without a doubt, this has been life changing for me. If getting my son's ASD diagnosis cracked open a door for me, this family kicked it  open the rest of the way and put a door stop in, because you have to trust me when I tell you that there is no way you could meet this family and not be amazed by them. Hope...I felt such hope after talking to them.

I checked in with the family a few months after our initial meeting, and the Mom asked me how I was doing. I answered her by saying that I still had moments when I felt like I couldn't believe that I had a child with autism. How she replied to me was unexpected: "Me too", she said, "I still can't believe I have children with autism". And, as if their family hadn't done enough for me already, what she gave me at that moment was akin to a Get Out of Jail Free card...permission to not always be o.k. with the path in life we are given, but to persevere anyway. This is still incredibly enlightening to me and I will forever be grateful for her raw honesty.

So, yes, I stalk this amazing family, but do so now as their friend. They inspire me, they give me hope, they let me know that my love for my son will be boundless. They were my first connection to the autism community and embody the strength and compassion that I've come to rely on from my friends who walk in similar shoes.

As I reflect on what I am thankful for this time of year, it includes my gratitude for this family who opened their lives to a stranger one day and showed me how to walk run my path without shame or sorrow, but rather with conviction of purpose. This is a tribute, a thank you, long past due but no less meaningful. So, thank you.

Keep your fears to yourself, but share your courage with others.
-Robert Louis Stevenson
 
 


Wednesday, November 11, 2015

A World All his Own

When the house is quite and Evan's time is his own, this his how you might find him. I know that he needs this time in order to manage the world's expectations, but it hurts just a little because in these moments he is unreachable.

The cat, by the way, can often be found close to Evan and will follow him from room to room.

Tuesday, November 10, 2015

Free and Appropriate Public Education

Today was our meeting with the school to address the outside testing we had done on Evan over the last few months. Overall, I was actually impressed with the time the school had taken to review the reports that we supplied and when we sat down for the meeting the school had copies of a new proposed IEP with changes that they were making based on the reports. They had taken the time to print all the pages of recommendations in our reports and color coded each segment (Yellow for things that were already in his IEP, Pink for changes that they agreed to make to his existing IEP, and Blue for things that they didn't see a need for currently). This system made our meeting flow nicely and really helped us focus in on the things that the two camps (our side vs. the school side) disagreed on.

There were several things in blue that our team was able to talk through and put in context for the school that was ultimately added to Evan's IEP. In addition, there were several things that came out of group brainstorming that we were able to add as well.

While there are a couple of unresolved issues still left on the table, the bulk of the meeting was positive. Evan's test results were pretty clear and the school really didn't have any choice but to increase his services in several areas. Based on the proposed additional services, it looks like he will formally be moved from a full inclusion setting to a partial inclusion setting, which means that he will spend greater than 21% of his time, but not more than 60% of his time, outside the general education classroom. This is a necessary step on the road to the possibility of having him in a substantially separate classroom and one we welcome. The idea of putting him into a substantially separate class was one that was spoken openly about at the table; not one person disagreed that we may be moving in that direction, which I take as a positive sign that the school is aware of his needs and is considering how they will service his needs in the future.  Or, they just opened the door for me to prove that they need to place him out of district.

I just want to back up for a moment and consider how we got here. Evan's three year review at school is coming up in the spring of 2016; a three year review is required for all students on an IEP and is when the providers retest the areas of need as outlined by the IEP. The school providers all meet and determine what testing is necessary, based on age, need, etc. The school then sends a letter home asking permission to do the testing. How do you know if the testing the school recommends is appropriate? Well, you research it, ask other parents, hire an advocate to help you through the process, or you might just cross your fingers and hope that the school knows best.

The medical model of testing is different. Neuropsychological testing is recommended for Evan every two years and speech testing every year. Because I have my own outside providers, I opted to do most of Evan's testing privately and ahead of the school's three year timeline. There are still some educational testing that the school may recommend, but the most critical tests for Evan now were all covered by his clinicians. In addition, we paid an educational expert to observe Evan across many settings in school; an educational expert is a person with an educational background, but also schooled in educational law and best practice and has an understanding of disorders that impact a child's access to learning. If a disagreement with a school goes to mediation, an educational expert is necessary to prove your case.

You can imagine that a young child can change significantly over the course of 3 years. So, too, does the understanding of learning, language, and executive functioning disorders that cannot be tested on a 4 year old, but can be tested on a 6 year old.

Consider next that there is this requirement under Section 504 of the Rehabilitation Act of 1973 called Free and Appropriate Public Education. FAPE requires that all qualified persons with disabilities within the jurisdiction of a school district are entitled to a free appropriate education (you can read more about that here: http://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html).

Turns out that proving what is appropriate is actually quite expensive and not at all free.

Our meeting today cost us probably around $5000.00. Significant changes were made to Evan's IEP, which the school agreed was appropriate, but only because we paid to have the testing done and our team at the table. Otherwise, the school would have done some testing next March, discussed the findings in April, given us a new IEP to sign in May, and implemented the changes right before the end of the school year.

This fact gives me significant pause - that left to the schools' devices, Evan would have been left for 5 months in a setting that was NOT appropriate and this is a kid with a diagnosed neurological disorder. Kids with autism in MA get some of the most comprehensive educational services available because there is a law that says they must and yet here we are, in 2015, having to push this hard. And what about the other kids who aren't getting private testing, whose parents aren't advocating for them, who have more complex and even harder to understand diagnosis than autism?

For the moment, though, I'm going to let this go and celebrate the advancements that we made with the school team today. I'm feeling good and like we are moving in the right direction. I hope, as soon as the new changes take place, that Evan will start to feel good too.

A little side note to those in the SpEd trenches with me...fight on, my friends, fight on...



Friday, November 6, 2015

Some (Not So) Easy Reading


 Here is my homework in preparation for an IEP meeting next week to review all of our outside medical reports. They include a 14 page neuropsych evaluation, a 19 page speech evaluation, and a 21 page educational report. I've also found a 57 page thesis on the pros and cons of inclusion for children with ASD that I plan to highlight it to the hilt.

There are a lot of positive things written in all these reports, but when I sit at an IEP meeting, I have to be the "glass is half empty" type of gal. Evan has made great progress, but where is he in relation to his peers? How exactly, are they measuring his ability to access the curriculum? Etc, etc. Last year Evan completed a math assessment in 5 days. Great! But, it took his peers 15-20 minutes. This was considered him accessing the curriculum. I have a problem with that.

There are many, many reasons that I am leery of his current public school placement, some I've blogged about, others that I haven't. I do not believe that inclusion is the best model for all students, and while I am thankful for the work my Special Education forefathers did on behalf of disabled students, the "one size fits all model" that, for the most part, public education adopts, leaves a number of students with significant disadvantages. I believe our public school system is in many ways broken, and while I'd like to see it changed for the greater good, my priority is to make sure that Evan does not fail.

My team will be presenting a significant number of language, learning, and social recommendations. We will be setting the groundwork for Evan to be moved to a substantially separate classroom (that currently doesn't exist in our town) or to be placed out of district by 3rd grade. This will likely be a long, hard, expensive battle, but one I am 100% committed to. Evan is struggling in class, crying regularly, asking for a different life, and wants a "new school" (we do not talk about this in front of him, so this is not language he is getting from us).

One of the hardest struggles of an invisible disability is that one can appear "normal". Many people play this to their advantage and try their best to fit in, or to have their children fit in. Not surprisingly, I'm sure, this is not our approach with Evan. Evan might look "normal", but let me give you just one piece of information from the pages and pages of reports we have: his ability to retell a story without the use of visual aids is at the age of 2-3 year old. At what grade level do you think this will finally catch up to him?

Here is something to strengthen my argument...in the conclusion of The Pros and Cons of Inclusion for Children with Autism Spectrum Disorders: What Constitutes the Least Restrictive Environment? by Lindsay J. Vander Wiele, she writes:

Never should happiness or appropriateness be sacrificed under the guise of "normality".

Amen, Sister, amen...

Stay tuned for my therapy disguised as a blog after our next week's meeting.

Friday, October 30, 2015

Our New Normal

Our new normal at school is to not expect the normal.

Today was Evan's school Halloween celebration, which includes a costume parade and classroom party. The kids go outside and parade past all the parents...this went terribly for Evan last year, so I was not surprised that he did not want to participate this year. Instead he stayed inside (without a costume on) and, thanks to the genius idea of his Aide, he tallied different types of costumes that he saw as the kids all paraded past him.


Here was his tally:

The classroom party had more parents that I had expected, but Evan seemed to be doing fine though I was in charge of the game area, so I wasn't paying close attention to him. While I was with a group of children, Evan came up to me and said, "XXXX is SO RUDE".

Oh, boy. Seriously?! XXXX's mother is standing right there, and I don't know her so I can only guess at what she is thinking right now.

I was totally taken aback and should have reacted differently. I think I said something about that not being nice, and then the SpEd teacher quickly jumped in and said, "but sometimes he is very nice" and redirected Evan to a different activity.

When Evan's group made their way to the games, I was sure to pull him aside and tell him that what he did wasn't appropriate and that it is o.k. for him to feel that way but he needs to tell me quietly and privately, and that he needs to apologize to XXXX because he probably hurt his feelings.

Then, I was sure to catch the mother on our way out after the party to let her know that Evan's actions were not appropriate or o.k. with me and that I have spoken with him, and will also speak to the school since I wasn't pleased with how the SpEd teacher dealt with the situation either. I  also apologized myself to XXXX.

This is not going to be the last time this happens. It's also not the first. Just two last week we were at my niece's band competition and as we walked to the field there was a man in front of us smoking. We all thought it was gross, but Evan yelled, "DUDE, YOU ARE GOING TO DIE". So, yeah....

This is the first time I witnessed this sort of interaction with a peer, however. And, here is how the negative assumptions about autism start. This is when my parenting skills get questioned. I'm not blind to this, but it bothers me greatly and scares me even worse. Not for me, but for Evan.

On the bright side, I was totally distracted enough to not be sad that Evan was the only one inside while all the other kids paraded past proud parents. Sorry, I've got no parade pics to share people, but I can tell you that the most popular costume was 'Other'.

:)

Sunday, October 25, 2015

A Sensory Nightmare: Great Wolf Lodge

Need I say more than the title implies? Probably not :)

Our mistake this morning was not making Evan put on his headphones while he spent an hour at the arcade. It ended up with him like this:

He didn't stay like this too long, but long enough for me to take the girls out to the water park until Evan and Jayme were ready to join us. Even then, Evan spent a few minutes on my lap getting some deep pressure before he was ready to change and go in the water.

We started having Evan wear headphones around the time he was 3 or 4. At first, we had to put them on him before he got overwhelmed, or he would fight them being put on his head. Over the years, he has gotten to the point where he will initiate wearing them on his own, but he still doesn't always recognize when he needs them. For those not familiar with this strategy, I'll just say that for Evan, who is very sensitive to noise (not always loud, by the way), he is able to tolerate much more activity when he is wearing his headphones and is less prone to meltdowns. This has been significant enough for us to insist that he wear them at school, and we have no less than 3 pair floating around our lives for easy access. Jayme and I are often surprised that this strategy is not used more with kids that have autism, but it is our firm belief that as long as he is comfortable wearing them than everyone else should be too, and we encourage people to ask him about them because he'll give you a very honest answer about why he wears them.

Anyhow, when we arrived at the indoor water park yesterday, it was he who initiated wearing them in the water. I was surprised, actually, but he insisted that he wanted them on (and have you been in an indoor water park? I wish I had headphones too). So, we spent our hours yesterday and today in and out of the water like this:


This turned the heads of more than one child and adult and led to what I hope was a productive conversation between a child and his mother in the hot tub, but I saw two kids covering their ears today that also probably wished they had headphones on. Evan did great, and without a doubt, these headphones made this resort accessible to him. I would argue that he tolerated the lights and noise better than his parents because he was sad to leave and wants to go back for his birthday, and Jayme and I are just like Dude, really?!

:)

Sunday, October 18, 2015

Evan Wants A New Life

Evan is really struggling with all of his therapy...the concept of it, that is. He is starting to understand that no one else he knows has to always "do work". He'll ask if anyone is coming over to the house, and when I answer yes he'll start crying and say things like:

I want a new life!

I want a new life without therapy!

I don't like this life!

These statements are very hard for us all to hear and just pierce my heart. If your child's soccer coach told you that practice was mandatory 5 days a week for 3 hours each day, you'd probably think they were crazy. Yet, that is what we ask of Evan, and trust me on this - therapy is not nearly as fun as soccer.

So, when do we stop? Why don't we stop? When do we say that skills he has are enough? Good questions. We don't know. What we know for certain, based on research and our own experience, is that in order to maximize his skills in hopes of him attaining independence as an adult requires intensive intervention now. Try explaining that to a 6 year old.

We were driving to speech therapy yesterday and he cried to me:

I want my old life back!

          - the one where you'd bang your head every day until your nose bled? Sounds lovely.

When is my last day of therapy?

          - 2026? Or, maybe never?

While I was waiting for Evan to finish his session yesterday, I was reading a blog on The Mighty about a Dad's struggle to get his son to take his chemo medicine every night. Now, that is tough. While I worry about Evan's mental health in the future (kids with autism are three times more likely to commit suicide in their teens so, yes I worry about this now because somehow as we pummel him with therapy we have to also convince him that though his brain is different, it's not bad and that we love him just the way he is, even though we are trying to change the way he is), this is no life or death battle. A little perspective taking during these times is always good for me, and while my heart will still hurt when Evan cries to me that he doesn't like his life, well...if that is the extent of our problems, then we are truly blessed.

Wednesday, October 14, 2015

The Story of Stimming

"The term "stimming" is short for self-stimulatory behavior, sometimes also called "stereotypic" behavior. In a person with autism, stimming usually refers to specific behaviors such as flapping, rocking, spinning, or repetition of words or phrases."

"...people with autism stim to help themselves to manage anxiety, fear, anger, and other negative emotions."  http://autism.about.com/od/autismterms/f/stimming.htm


Like with most things with autism, there is a socially accepted preconception (by the neurotypical community)  about what stimming looks like. Hand flapping is usually the first thing to come to mind. Evan doesn't do that.

But, shhh...listen...

...and you'll hear Evan stimming.

For several years Evan has been doing what I call tongue clicking; it pretty much sounds like what you think it would sound like. It's never consistent, and crops up now and again, and it's something that we've been keeping an eye on.

During the second week of school in September, Evan started clearing his throat obsessively. At first I thought he was getting a cold, and he did a full week later, but the throat clearing never went away. Then, he started making a verbal noise in the back of his throat, sometimes with the throat clearing and sometimes without. Then, his tongue clicking increased.

It is to the point where this morning as I was getting him dressed, he was being so noisy and all the sounds were going and I was thinking, agh - it's a cacophony trifecta!! (O.k, so I'm a bit of a nerd, but I was trying not to laugh out loud - lest I cry instead - and this was truly what was running through my mind).

Now I've got to worry if I should be worried about this, and I think that probably a call to the neurologist wouldn't hurt. There is nothing you can do, though, unless you try to extinguish the behavior with ABA or medicate to reduce anxiety, neither of which I'm ready to do yet. But, so the change in behavior is noted in his medical record, I will make the call.

Here is what I've been noticing, however...when I snuggle Evan and give him pressure, when he sniffs my neck to breath in my scent, when I hold him in the morning....

Shhh...listen...

...there is silence.

Saturday, October 10, 2015

Sometimes The School Gets Things Right

I've been school bashing a bit recently, so I wanted to share something positive. I also hope it serves to let others know just how much the school can work on if you know to seek out certain services.

Evan is extremely rigid and like many kids with autism, he will only eat certain foods. Now, I'll stop your inner voices right there...he is my third child and my middle one is an extremely picky eater (as in, I consider her lunch choices to be varied because every day I make her a different shape of pasta), but this is different. Autism adds another layer of complexity to picky eating which is hard to explain unless you live it, but an example of this might be the day Evan didn't eat any solid food until 4pm (liquid only), or the fact that popcorn has served as his breakfast food more days than I can count. We are luckier than many in that he will eat a wide variety of food, but only on his terms.

At school, Evan orders the bagel lunch every day. Every. Day. I can still hear the doubters...that fact on it's face may not seem totally unusual, as lots of kids eat the same thing every day. The problem here is that we run the risk of establishing a behavior that we cannot extinguish. Evan once had a therapist whose adult cousin has autism, and he ate  McDonald's every day for lunch. Every. Day.

The other problem is that Evan doesn't have the flexibility to make another choice, and this is really where the danger comes in. One day last year the school ran out of cream cheese, and so Evan didn't eat.

After Evan had such a bad summer program at school, his eating issues became elevated by the school BCBA (in what I feel is a 'cover my butt' move, but I'll take it). Though we had different priorities, hers being that Evan be more flexible with lunch box packing at home, mine being that he be more flexible with lunch buying at school, ultimately I got to choose what we worked on first because I'm his mother.

So, after ironing out his lunch buddy program (which is back on track, minus the girls participation for the time being), the school began his new behavior program this past week. First, he was shown a social story about buying pizza with his bagel; there was lots of planning that went into this, and I'll spare you the details, but it was a program that I was comfortable with and felt like he wouldn't be denied food if he chose not to eat the pizza.

Don't you know, I got an email after lunch yesterday telling me how great Evan did and he ate almost the whole piece of pizza and wants to order it again next week. Success!! (O.k, I never thought I would consider the act of ordering school pizza a success, but oh - how times have changed for me).

We've got a lot more work to do with this plan as we are essentially going to be trying out all of the school lunches that I think he would eat, like chicken nuggets, for example. In this instance, however, I've got the school understanding how a behavior that can look so normal on it's face can be so detrimental and rigid. The school is responsible for educating our kids every second that they are in the building and lunch is no exception...hats off to Evan's team for making this lesson go so smoothly.

Tuesday, September 29, 2015

Look What Came Home From School Today






A new permission form. While not perfect, it is better than the first one. Now, here is to hoping that this went to Evan's class and that more kids return it. This came home without any verbal communication from the school but I did get a late day email from the SpEd Director asking to meet with me on Thursday.

Progress, people, progress...inch by hard earned inch.

Monday, September 28, 2015

School Lunch Update

I'm so angry right now. I just got off the phone with the SpEd Coordinator regarding my lunch concerns. I wanted to talk to her because, based on her emails, I was concerned that they were not seeing the bigger picture of Evan "choosing" to eat in the cafeteria, and I was right.

To back up just a bit, the information that I had was that Evan was eating in the cafeteria so that he wouldn't have to eat with a girl. The school is telling me that Evan is choosing to eat in the cafeteria, even before drawing sticks, so that he can eat with his friends. O.k., I said, I believe you, but can you understand the difference in choosing the cafeteria to eat with his friends, vs. choosing the cafeteria to escape eating with girls? Oh, that made her mad, and I wish I could convey the tone in her voice as I write this. There were people in the background of her call, so I'm sure they got an earful after we hung up.

The school coordinator said that she felt like we were losing focus of the fact that he was originally removed from the cafe for sensory reasons and the fact that he wasn't eating. Now, she said, she felt the focus was becoming social. This is the point at which I nearly self-combusted. Of course there is a social implication to lunch time - he has AUTISM!!!! No, she said, this isn't about autism because "my son wouldn't want to eat with girls either".

And I agree with that statement. Many 6 yr old boys don't like girls. My 9 and 11 year old girls don't like boys. But, when they are sitting next to them at snack, they eat. And if they have to sit with them at lunch, they eat. And, if you put them in a room with a boy from their class, they wouldn't escape to another area. And, last year Evan ate with girls all the time, but he had known most of them for 1 1/2 years, some of them longer. He had established relationships with those girls, and none of that was considered when they instituted the lunch program for him this year (I'll be honest, I didn't consider it at first either). But, then not one person thought to look at the pattern of behavior that happened when he repeatedly kept picking a girls name for lunch time. Because their only focus is how much food he is eating, and since his food intake was only affected some days, nothing else was considered.

Oh, and there will be no additional notices sent home to better describe a lunch buddy program and no, no children from other classes will be allowed to eat with him.

As an aside, I hate it when people, especially those in Special Education, compare Evan's behavior to those of their neurotypical children; it shows a lack of sensitivity and poor understanding of our situation. Jayme and I embrace "normal" things that Evan does, but I'm sorry - this is a child with poor social skills, with a history of not eating and disruptive behavior at home due to things that happen at schools and I'm certain that on day 13 of First Grade he did not miraculously decide that the cafeteria was way cooler because his friends are there.

So, when the coordinator pulled the "my son" card, I stopped talking. I pushed down all the words I had to say and tried not to cry (I cry easily, by the way, especially when it comes to Evan and I was SO frustrated that she was not listening to me). Then she stopped talking (I'm sure she was just as frustrated at me). I said that I appreciated the fact that she will let Evan pick between another boy who frequently eats in a quiet space and the 2 boys that returned their permission slips, and that we can talk about the rest later. I even said thank you, even though I wanted to scream at her.

I'm not done, though. I'm feeling more calm after writing this out, and I've talked to Jayme about where we go next. The point is not to end with Evan having 3 kids to eat lunch with.

XXX

I stopped writing this post at the previous line and took a long break. During that time I drafted and sent an email to the SpEd Director; while I won't share the letter in it's entirety, he is an excerpt:

"...but she (the SpEd coordinator) did say that she worried we were losing focus...that we originally removed Evan from the cafe because he wasn't eating his lunch, and now it seems to be more socially based. Of course, I said to xxx, there is a social component to this because Evan has autism, to which she replied that she believed that this had nothing to do with autism because her son wouldn't want to eat with girls either. I'll admit, at this point in our conversation I became quite agitated, because with a child with autism, there is not a single part of their day that does not have a behavioral or social ramification. There is clearly a disconnect between what I consider normal for him vs. what xxx thinks is normal, because unlike other children, if not corrected, Evan's behaviors have the potential to become permanent. What starts as not tolerating sitting with girls while eating lunch becomes not sitting with girls across many settings with the potential for significant behavioral breakdowns. This exact scenario played out this summer, in fact, which is what prompted me to ultimately move Evan from his originally assigned summer class; he was eating with peers he couldn't tolerate (a girl, actually), then he stopped eating, then he became aggressively destructive each morning before leaving for school. So, when I say that you cannot separate out the social and behavioral components in this situation and I am told by the coordinator of the SpEd program that this has nothing to do with autism, that is a huge red flag that demonstrates a clear lack of understanding of the complexities of what we are dealing with in regards to Evan.

 To be clear, we are dealing with two separate issues.  First, we do need the remedy that xxx agreed to which is that the girls names on the popsicle sticks will be removed leaving Evan with tolerable choices for lunch.  Second, we need to acknowledge that though on its face Evan's "boys vs. girls" mentality may seem age appropriate - it will also have unintended consequences.  We know this to be different from other peers in that the normal population will tolerate being in the presence of the opposite gender whereas in Evan's case it becomes so disruptive it can interfere with his ability to eat and/or tolerate his entire school day.  This difference cannot be discounted or dismissed and has everything to do with his autism."

If you have a child in Special Education, I dare you to scratch the surface of your child's program. If you didn't think I was blacklisted in Evan's school before this letter, you better be sure that I am now. Jayme gave me the backbone to send the letter, but Evan gives me the fire.

Wednesday, September 23, 2015

School Social Group Permission Slips - The Real Truth

If your child is a classmate of my son, then I would like to explain something to you. When your child came home with a permission slip to be allowed to eat lunch outside the cafeteria in a "social lunch bunch setting", what it actually meant was that your child would be allowed to eat with Evan in a quite setting with occasional verbal prompting from his aide to facilitate conversation.

I knew that the permission slip was misleading, but I didn't say anything because last year Evan's whole class returned the slips without an issue. At my first parent consult meeting last week, I was told that "all the slips have been returned".

In this case, ALL is defined as 9 slips (2 boys and 7 girls). And Evan won't eat with the girls, so now he is eating in the cafeteria most days and I'm starting to see some problems at home. But as far as the school is concerned, he is choosing to eat in the cafe on his own, even though they know that every time he picks a girls name from the Popsicle stick jar that tells him who is lunch buddy is that day, he changes his mind from eating in a quiet space to eating in the cafe.

This is the school 'accommodating' Evan's need to not be in the cafeteria.

The school does not want you or your children to know that Evan has autism. They say that no one knows he is 'different'. I think they are wrong, and by not allowing kids to know that it is O.K. to be different, they are, in fact, reaffirming all those stereotypes that are dangerous for kids like mine.

 I want you to know that Evan doesn't like to be in the cafeteria because it is loud and overwhelming but he is kind and caring, and wants very much to have friends. (Sorry...he doesn't care so much for girls right now.) I want to put a face to the permissions slips, because when you didn't send your child's slip back into school, you denied him the opportunity to sit and have lunch with a great little kid. That hurts my Mommy heart. If we don't teach our kids now, at an age when they are incredibly open and honest and care little for social status and conformity, that it can be fun to sit and eat a quiet lunch with a cool kid who might be a little bit different then they are...then who is going to be his friend in 2 years, 5 years, 10 years?

I'm feeling quite mad at the school right now but not at you, because you probably didn't know. I hope this helps.


Friday, September 18, 2015

The Levels Program

I promised I would report on some recent successes and I'm finally following through. One of our long standing difficulties with Evan is controlling his bad behavior (like yelling, throwing, and hitting) and punishing him, so I targeted this is an area that I wanted to address with our behavior therapists. After lots of group brainstorming and one week worth of data collection to determine the frequency of these types of incidences (I'm frequently collecting data and you can often find data sheets littering our kitchen counter), our BCBA came up with a plan called The Levels Program.

The picture is pretty self-explanatory; there are three levels: green, yellow, and red. The goal is, of course, to stay on green. Evan's rules are as follows:
  • I will use nice words and speak kindly when I talk to people.
  • I will not hit other people or do anything to hurt them.
  • I will not throw things.
  • I will not yell.
  • I will be safe and not destroy anything.
The levels are explained as such:
  •  Green - As long as I follow my rules, I can have access to all of my fun toys.
  • Yellow - If I use mean words or raise my voice, I move to yellow and lose my toys for 30 minutes. At the end of 30 minutes I can have all my toys back when I complete a chore for Mom and Dad.
  • Red - If I use mean words twice, yell twice, destroy anything, or hurt someone else I move to red for 2 hours and lose all my toys. At the end of 2 hours I can have my toys back when I complete a chore for Mom and Dad.
Evan was explained the rules and was told that for each 2 hours block that he stayed on green, he would earn a check. A certain number of checks will earn him a small toy that he can choose out of a bucket (the number of checks increase incrementally but currently he is earning a toy every day). Yes, I am back to scoping out every cheap small toy that might entice him, just like the days of early potty training.

We began this program on September 2nd. At that point, Evan was yelling and screaming at the girls every day; he was not tolerating anyone near him at times to the point that we couldn't even be in the living room at all without him going crazy. On September 2nd he yelled at one of the girls and moved to yellow (yes, this caused a tantrum because, no, he didn't like it). He has stayed on green ever since.

Let me say this again. He went from yelling at us daily to not having yelled at us since September 2nd. Can you say success?

It's not all peaches and cream here, though, folks. He'll now allow other people in the living room when he is playing, but you cannot be in his space. We are working on a program to help him tolerate others to be near him during his play time (this is his solo play, in which he gets lost in his own world), and teaching him to take himself somewhere else if he truly needs to be alone; this program will take time, though, and since he isn't yelling at us to move away from him, we respect his wishes to be given space. He also still gets mad, but now he'll just cry and either calm down on his own, takes himself to his room, or requires intervention from me to calm down....no worries because this is so much better than how he was just a few weeks ago.

The Levels Program will not work forever. In fact, I'm just waiting patiently for him to explode, get reacquainted with yellow (or possibly red), and then start over from there. It's bad behavior, after all, that can reinforce good behavior and every once and awhile we all need a reminder of that (think too much to drink when out with your friends, for example).

With ABA we are literally reclaiming our house, our behaviors, our lives from autism. We have a long, long way to go but we are making forward progress and I'm feeling pretty good about that.






Monday, September 14, 2015

iPad Use in School

Change is hard, I get that. But, when change is resisted in the face of evidence of it's efficacy and to the detriment of your child, it's hard not to get frustrated.

Jayme and I have been pushing for the increased use of the iPad for Evan for close to one year. Last December we even offered to purchase Evan his own iPad for school use and we were immediately told by the director of Special Ed that it wasn't necessary because "we have carts full of iPads for student use". Huh, we wondered, then why isn't an iPad being used with Evan? It is, we were told...the one time per week that the iPad cart was brought to his classroom for it's general use. No additional use was ever discussed with us.

So, we brought this up again at his team meeting in March. It was unanimously agreed, and is written into his IEP as an accommodation, that the use of technology with Evan will be beneficial. But, at every parent consult meeting when I asked about it no one could explain to me how or when they were using the iPad.

I brought it up again, in June of last year. Forcefully. Saying that I specifically wanted the iPad used as an adjunct to his social skills group. There are great apps, I said, that allow you to create customized social stories using real pictures and voice recordings that would be great for use during social teaching. Everyone smiled nicely at me, and then I went home.

By the end of June I received an email stating that the school didn't own any social skills apps and that there was not enough time in the school year to go through the hoops of purchasing and implementing one. Bullshit, I said (o.k., I didn't say that to the school but to anyone else that would listen), the behavior therapist FROM THE SCHOOL is sitting at my kitchen table RIGHT NOW with a school issued iPad that has a SOCIAL STORY APP ON THE DEVICE. WHAT THE HELL?!

That prompted an almost immediate visit from the school BCBA who came to my house, sat at the same kitchen table, and accused me of being short sighted (HA!!) and focused only on the use of an iPad in lieu of other teaching methods (I never said this, by the way) and just because one of the town's elementary schools owns the app (the school our behaviorist comes from) doesn't mean that the other elementary school (the one Evan attends) has it. I sucked in my tears and said that it is just stupid that in the same town that two schools can't get access to each other's technology, but whatever...let me remind you THAT WE OFFERED TO BUY HIM HIS OWN iPAD AND WITH APPS 6 MONTHS AGO!! Well, that shut her up, but the school year was over so we had to put the conversation on hold.


In early August I requested a meeting with our Special Ed coordinator to revisit the use of the iPad. Silly me, no one answers emails until they are required to, but by the start of school I had a few other more pressing issues on my plate. Last week I again requested a meeting about the use of the iPad and did, in fact, get a response (squeaky wheel gets the grease, as I've said before). Before our meeting, however, I had my first parent consult with Evan's SpEd teacher (he, of course, is doing GREAT, because that's what they always say). Before I left the meeting, I told her that I was meeting regarding  use of the iPad, and asked her if we got Evan his own device, would she use it with him? After telling me that it depends on my goals and expectations, blah, blah, blah, she pulls out a school issued iPad and shows me several apps that she uses with Evan when time permits. Wait, WHAT?! I would have appreciated this information earlier, but being that it was only 7 days into the school year, I decided to be the bigger person and honestly say, thank you for showing me this...it looks great and is exactly the use that I expect in his academic setting.

I wasn't done yet, though, because Evan is currently not getting any social teaching on the playground and if they can't offer that at this point, then they sure as hell can do the next best thing and create social stories around his real world setting and use them as tools in his social skills group. So, today was my meeting with the SpEd coordinator to discuss this and - don't you know - she and the school BCBA spent part of their weekend researching apps, found one that allows you to create your own story using real pictures from your own setting, have already talked to the school psychologist and speech therapist about incorporating this into their sessions, and has the purchase order ready to submit to have it put on all 10 SpEd iPads because this app will benefit other children as well as Evan. She went on to say that should we still decide to get Evan his own iPad, they will use the app on his device to better facilitate his learning across school and home.

Holy Crap. Are we talking the same language?  Maybe they've grown weary of this fight?  Or maybe - and this is my hope - they realize that progress is good, that technology is progressing faster than public education can keep up but there are some kids that cannot afford to be held back from the benefits technology can offer. Perhaps it's a campaign to shut-this-Fishman-up, but I don't care. I'll count this as my first victory for the current school year. Stay tuned, there are more victories to come.

Thursday, September 10, 2015

Neuropsych Testing Take 2

I just got the results from Evan's second neuropsych testing (his first was 2 years ago at the time of his diagnosis). Overall, I'm giving myself a pat on the back...Evan has improved significantly in his communication skills so it looks like all the hours of therapy we have put in over the years is helping. Jayme and I actually knew this; if we ever question his progress, we only need to think back 3 years to when we  had marginal communication with him, when he couldn't tell us he was hungry or thirsty, when he didn't sing or hum, when he would repeat any question we asked him instead of answer it...he was over the age of 3 at this point, nearly 4, so it's obvious that he's made huge progress since then. The PhD testing him was the same one that tested him 2 years ago, so it was a real treat for her to see him now.

Over time, she said, the results of the type of testing she did on him become fixed. We should be seeing improvements at this age, and we did, because his brain is malleable, but it becomes less so as he gets older. I know this; it's why we push so hard for services, and I wonder why she slipped it in. It could be, I guess, that some of his testing showed no improvement. Gulp.

Where Evan continues to struggle is in his spatial and conceptual thinking...his ability to break things down and recreate them. I'm not sure I understand all the implications of this deficit, but it's something that requires increased intervention. This will start with Occupational Therapy, so it looks like I've got to pick that  private service back up as we are not confident in the skills of our school OT.

Evan is old enough now to test his executive functioning, and this showed the greatest deficit of all. As in - we are on the wrong side of the bell curve deficit. What is executive functioning? Glad you asked...from about.com, here is one explanation:

       Executive functioning may involve abilities such as:
  • Estimating and visualizing outcomes;
  • Analyzing sights, sounds, and physical sensory information;
  • Perceiving and estimating time, distance, and force;
  • Anticipating consequences;
  • Mentally evaluating possible outcomes of different problem-solving strategies;
  • Ability to choose actions based on the likelihood of positive outcomes;
  • Choosing the most appropriate action based on social expectations and norms; and
  • Performing tasks necessary to carry out decisions.
What does that look like to you and me? Here is more, again from about.com:
  • difficulty planning and completing projects;
  • problems understanding how long a project will take to complete;
  • struggling with telling a story in the right sequence with important details and minimal         irrelevant details;
  • trouble communicating details in an organized, sequential manner;
  • problems initiating activities or tasks, or generating ideas independently; and
  • difficulty retaining information while doing something with it such as remembering a phone      number while dialing.
The last bullet point is an example of "working memory". In both Evan's recent speech testing and neuropsych testing, they found that he has essentially no working memory. Apparently, it's quite necessary to be successful in school. Here is a real life example, though, and it may help you understand how we see this affect him in every day life: when his therapists leave for the evening, I always prompt him to say goodbye and thank you...he only ever says one of those things. Then, I have to prompt him to say the other. The same thing happened at school drop off this morning when his aide said, "say goodbye to Mom and tell her to have a great day". He said, "goodbye" and then stared blankly as if another command had not been given. Now I understand why; he can't keep those two simple commands in his head for the two seconds it takes to say them. Wow, right? Imagine not having that skill and progressing not only academically, but socially...it's nearly impossible.

The good news is that we can work on this skill through speech and academic programming, and you better believe that this will be our #1 objective at his upcoming IEP meeting to discuss his testing. O.k., maybe it's not the only #1 thing, but seriously, how do you prioritize these things when your teaching window is rapidly closing?

There is one more skill that Evan falls on the wrong side of the bell curve, and that is his ability to process information. Sadly, this skill has not been proven to be malleable and he will require extra time to process information for the rest of his life. Our hope, of course, is that he gains skills that make up for lack of this one, but we won't be pushing him into a career of emergency medicine, that's for sure...pretty sure you want the person saving your life to have the ability to make split second decisions.

I have to stop here, as I'm avoiding lots of things in the house to get my thoughts out. I'm wondering, for example, how many loads of kids laundry I can keep in my room until their drawers are empty? I'm up to 4...stay tuned to see how high I get. I've got to catch up on my blogging, though, as the start of the year has been busy with a couple of great ABA successes and  some school struggles, including the one that just started today when I realized that there is a mistake on Evan's service delivery grid that I never caught before I signed off on it and the school has taken full advantage and is not providing the previously agreed upon service. Don't worry, I've got the notes from the meeting, two emails already sent, and an in-person meeting with the SpEd coordinator on Monday which was scheduled to deal with something else but will be hijacked for this new problem instead.

Let's circle back to the good news as I kind of need it...Evan IS progressing. Keep up the hard work, buddy!!

 

Wednesday, September 2, 2015

This is What My Tuesday Looked Like

1:30 - I begin coordinating the schedules of Jayme, our attorney, our educational expert, our speech therapist, and two BCBAs for Evan's October IEP meeting.

3:00 - School pick-up.

3:25 - Home from school.

3:45 - Start 30 min session with BCBA hidden in our house while we Face Time and she runs 5           minute blocks of time to work on compliance. Evan spends the first bit of this session in tears.

4:15 - I spend 10 minutes with the BCBA following up from our session.

4:30 - I make dinner reservations in Boston for a re-do of my failed date night a few weeks ago...my head is already in a bottle of wine and fancy food.

4:53 - I take a call from the BCBA that owns the behavior therapy company to discuss the updates to our insurance issues (remember, Aug. 3 BCBS revoked our ABA coverage). Though the insurance company agreed to pay the charges from March to Aug. 3, they have instead rejected all the claims.

5:10 - I start dinner, Evan's choice of chop suey that he decides NOT to eat. :)

6:00 - Our two behavior therapists arrive. One starts work with Evan, the other starts asking me questions for an assessment called the AFLS (the Assessment of Functional Living Skills).

6:30 - Our primary BCBA arrives; we stop working on the AFLS and start reviewing Evan's new punishment system (which we began today), and then spend an hour discussing his new behavioral problems and how we are going to tweak his programming. I'll blog more about this later.

8:20 -  The therapists leave.

8:30 - I finally fit in my shower.

9:00 - Kiddos are in bed and I am officially no longer talking to anyone.

Somewhere amid those hours above Shayna tells me that her homework is to have me fill out paperwork. Hmm...nope, didn't happen; I crammed that one in this morning before she got on the bus. Turns out I was supposed to have Lily's done too. Oops.

Let me say that obviously not every day is like Tuesday. Tuesday will happen again, though, because it happens to be the day that the BCBA running the stealth mode treatment sessions has available, and also the day that our primary BCBA has available. I've had to hire a babysitter to get Lily to her music lesson and have to put Shayna on a different bus to drop her at dance class (as of now I don't have a ride home for her yet, but that starts in 2 weeks so I have plenty of time to work that out).

What I do want to impart to you is this...raising a child with autism is relentless. It is my full time job many, many days. Not all of my days, but a lot of them. When he is doing well (and even when he isn't), things crop up like insurance snafus, school problems, new research to look into. Then, when one behavior gets better, 2 more pop up. Jayme describes it as being similar to the game of Whack-A-Mole, and he is exactly spot on.

I'm not writing this for sympathy or a pat on the back to tell me I'm doing a good job. Even with all my attention to Evan, things still slip by me, like the fact that the start of school has come and three days later Evan continues to eat alone because they haven't sent home permission slips yet for peers to join him. One forward thinking Mom actually sent in her own note today, which was promptly ignored by the school. It took about one nanosecond for me to send an email about that when we got back from school pick up today.

Anyway, I'm writing this to say that this job is HARD and NEVER ENDING, and - o.k. - raising any child is hard and we could have it so much worse, but after a day like yesterday I find myself frustrated  at things like the fact that my girls' teachers expect me to have the time to fill out the emergency forms for school (the information hasn't changed in 7 years, thank you very much...I'll let you know if I move and until then, let's work on streamlining some paperwork, shall we?) when I'm literally spending MY WHOLE NIGHT in autism-land (and much of my day too). There are people in my house 4-5 days per week, every week...there is no break from this work, because when his therapists aren't here,  it is up to us to follow through so he progresses. Can you tell my mind is spinning? I'm not organized by nature, and I've got so many autism balls up in the air right now. And, two other kids, who have mostly been ignored the last two days.

Ahhh...that date night can't come soon enough...time to recharge my batteries.


Thursday, August 27, 2015

Did That Just Happen?

Evan hit his behavior therapist tonight. I'm appalled that he did it, but glad it was her and not anyone else. Agh...I don't even know where to start...

Let me back up two days. On Tuesday, Evan had 4 hours of neuropsych testing during which, according to the doctor administering the tests, he did a great job testing and worked very hard. From there, we went to my sister's and Evan played with his cousins. Yesterday, he fell apart. In my mind this was a totally expected outcome from the previous days activities, but he was so out of sorts at one point that he couldn't tolerate any noise, not even the microwave. He did manage to play for a couple of hours with a friend at an indoor amusement place, but as soon as he came home he was a mess again, ultimately falling asleep before dinner and then going to bed really late.

Today, we went to his school to see his new classroom. The visit went well, but the school is under construction and a bit of a mess, and people kept coming up to him and saying hi and he was being continually prompted to interact with them; I'm sure this was all a bit overwhelming for him. After lunch he got his haircut (super cute new look, by the way) and then wanted to go to a playground; the girls were with friends, so it was a perfect time for he and I do something together, only he decided he wanted to play alone and then started stalking a girl at the park while claiming to be a chameleon and ruler of the earth...funny until he threw a stick at her, because yeah - he wasn't joking, he was trying to destroy her.

O.k., so we made it home, at which point Evan entered into his imaginary play. Now, he has been doing this solitary play for more than a year; we asked about it at one of his appts at the Lurie Center (Mass General's autism clinic) and they explained to us that this play was a common way for kids with autism to regulate themselves. He gets mad if you interrupt him and it is because, so they say, his play has a beginning and an end, and it has to complete the full story in order for them to move on. We definitely see this as a truth with Evan.

So, his therapist came in late this afternoon and interrupted his play. The rest, as they say, is history. He was terrible with her, screaming at her to leave the house and never come back. She, being an amazingly patient soul, kept at him (kindly) and even got him to the place where he would play 'monkey in the middle' with the two of us. Unfortunately, she was chasing a ball that he was trying to catch and he hit his head, and this was the point at which he hit her. Not hard, but does that even matter?

I'll be honest, I feel like when we tell people about Evan's behavior at home that they tend not to believe us because he is usually such a good boy. Also, young cute kids get away with a lot. I'm glad he had such a bad session today with his therapist (his worst session, ever, actually) because it validates our own experiences with him. If we don't address his behavior now, chances are quite strong that he is going to grow up to be one of "those kids" that no one wants to play with or be around. Maybe not always, but really...how many times can you hit or yell at your friends before they decide they've had enough?

Evan is now back into his imaginary play, yelling at the girls if they even step a foot into the living room, which he has declared as HIS space. Tomorrow he is having 2 hours of speech testing, so that should go well ;)

Oh, and the girls don't like his haircut. They seem fine with the fact that he hit his therapist, but don't like his hair. Priorities people...priorities...clearly they've seen their fare share of hitting. Sigh...

Sunday, August 23, 2015

Date Night






So, this was my view on my date night with Jayme. Out of the frame were the 3 girls also there. Yep, good times...

My Mom had offered to watch the kids while we were in Maine last week so that Jayme and I could go out for dinner. Evan, who doesn't like to be left with many people but typically begrudgingly complies, immediately had an issue with us leaving him with Nana and Grandpa. Ultimately, we caved and I grumpily drank down my glass of wine while reminding myself that in a few years I'll miss these kids terribly when they want nothing to do with me.

I think I can guess at why Evan was so distressed at the thought of us leaving. My parents are both hard of hearing (sorry Mom and Dad), and while Evan uses both his sisters to help him in situations when we aren't there (and sometimes even when we are), I think the idea of communicating with my parents during dinner time in a place that was not his home was just too overwhelming. Evan's typical tolerance for the number of times he is asked to repeat a question or phrase is 3; now imagine a child with auditory processing difficulties and a speech and language delay getting his needs across to a person who is hard of hearing, and vice versa - you can see how stressful that might seem to him. Truly, I'm just guessing at this...I could be way off. But, in an effort to cover up their inability to hear things accurately, my parents will often say things or use facial expressions that don't really fit what the other person is saying; imagine how difficult this is to someone like Evan, who gets confused at the slightest ambiguity of a phrase or expression. At the end of a full day, I just don't think he can always deal with it.

Anyway, once you include one child on a date, you might as well take them all. The restaurant was crowded and noisy, and Evan was tired, and the pictures above illustrate what happens in that environment. It is in these moments when I feel the most different from other families. Where his behavior is so different from other kids his age, and he's got his headphones on, and I'm thinking as I look around and see the people look at him, and then me, and give a hesitant smile that I'm feeling very special need-ish at the moment. I wish I could make it through this dinner without him having to need me, but I know he can't. Not long after I took these pics, I was sitting on the bench with him on my lap, giving him pressure in hopes of keeping him at the table long enough to eat some dinner. On this night we were successful, and he made it long enough for all of us to eat before he needed to leave. I've had many meals "to-go" on the nights when he can't make it.

We ended our week in Maine at my Dad's retirement party. Lucky me, I got to eat dinner in the dank basement of an old ski lodge, sitting on a bench across from the men's restroom. Just me and Evan, in the quiet of the musty cool air. Yep, good times...but I'm looking forward to a real date sometime soon.

Thursday, August 13, 2015

Last Day of Summer School

If I had any misgivings about moving Evan into a different summer class 2/3 of the way through the program, they were all put to bed today. I picked him up at the end of his class, and the most amazing thing happened...he became sad, and stayed sad for 3 hours.

I thought it interesting that as he was leaving the school, he turned around and saluted his teacher and said something to the effect of, "enjoy the rest of your summer, matey!". See, Evan does not usually greet or say good-bye to people; this is a skill that typically requires prompting on my part to make it happen. In fact, his private BCBA picked up on this and asked if she could start a teaching program; I was sort of taken aback because I didn't realize that it was so obvious (of course, this is what she does, so it makes sense that she would see the deficit). So, when Evan turned and addressed his teacher in an animated and loud voice, it made me stop in my tracks.

Then, as we were walking to the car, Evan said, "I miss Mrs. C".

Huh, I thought, this is odd.

Again in the car on the way home, he said that he missed her and he was sad. And then he said it again, and again. And then he sat in his chair for 3 hours all melancholy (to the point that I thought he was going to cry) holding a paint set and toy fireman that he got in a goody bag from the teacher and aides. Then he asked me if I thought he could visit her.

Here is the thing that I hope I can convey...he has never expressed this level of sadness before. Never, ever. Not even when our cat died. Though I know that Evan has a myriad of emotions, he displays very few. He is content, happy, playful, or mad. Often when he is hurt or sad, he becomes mad. His thoughts may be complex, but what he conveys is not...I would guess that this is a common feature that perpetuates all those stereotypes about autism, like that they can't understand emotions because they don't appear to feel them themselves. Any autism parent will tell you that LOVE is felt in a thousand different ways that don't require a kiss, a hug, or spoken words. Has anyone ever wondered why I talk to Evan slowly, concisely, with exaggerated facial expressions and intonations in my voice? Because this is how he'll learn to detect emotion and express it himself; we have to teach him everything that most people learn by osmosis, so to speak. And so we model it, and talk our thinking process out loud, and say the most obvious things and I'm sure that we look totally crazy in the process. I don't care...I think it's working.

I'm not sure what his connection is to this woman. I fear that part of it has to do with the fact that he entered a class of tough boys, was polite and kind, didn't have any behavioral problems, and was therefore a breath of fresh air for this teacher. "She was so nice to me", I heard Evan say more than once. Because I am sensitive to the fact that no child is innately bad to the core, I know that most behavioral outbursts by kids in a classroom setting are because they are not having their needs met. I hope that the addition of Evan into this class did not make it more difficult on some of these other children. It may have. It probably did. But it appears that he thrived. Welcome to one of the guilts of special needs parenting...if you were on a sinking ship, whose child would you save, yours or your friends? It's not so much different in the educational setting.

Enter the miracle middle child to bring Evan out of his funk. He has been much happier this evening but is still talking about visiting his teacher; I'm sad for him for missing her but thrilled that he's reached a new emotional milestone. Gosh, this kid has got potential...

Thursday, August 6, 2015

School Update

I just sent the email to officially pull Evan from his original summer programming. He will finish the session next week, just in a class that he was not initially assigned to but is a better fit for now; it is a half day program, half of what he needs, but as there is only one week left, I'm willing to let this go. And by letting it go I mean sending a letter to the school full of complaints and cc'ing our attorney.

I skipped CrossFit today to edit my letter, but that exercise was a luxury that I couldn't take time for today. I was rushing, too, to get things done so that I could take Evan to a playground playdate with a friend after school. The playdate went super well; we were the only ones on the playground and were with good friend, thankfully, since Evan had to poop in the woods. But hey, it wasn't in his pants, and it didn't phase him in the least so - YEAH! I just pretended that I had a dog to mentally get myself to the point where I could clean up the poop...hello, there are ticks everywhere in the woods and I wasn't prepared, so I didn't take him far off the beaten path. And, I'm not that much of a weirdo that I would leave the poop there. Anyway...

So, all went well. Until the ride home when my middle child told me she was hungry because I forgot to feed her lunch. Oops.

Wednesday, August 5, 2015

Sometimes Things Are Overwhelming

I'm a bit overwhelmed, and this piece may be a bit frantic or choppy, and probably long, but I think it will help me to write it out. I also wanted to capture, for those who don't live this, a bit of "in the moment" craziness.

We all know raising kids is overwhelming. Life shoots us crazy things like flat tires (try that with an autistic child), sick parents, and fruit flies. I'm a middle child, so these things often happen to me...I am the walking Murphy's Law example. So, welcome to the last two days of my life:

I rushed home from my long weekend to get my oldest into the doctor for her 4th antibiotic for a persistent ear infection. I happened to see a nurse practitioner fresh out of school (I dare say incompetent, but she was probably nervous) who couldn't even do an ear exam. No worries, I asked for the doctor...problem solved. I did, though, have to try to find the fastest ENT appt I could, which is not easy, and so spent time of the phone doing that. And managing a new antibiotic, around the clock ibuprofen, and 2 times per day ear drops for both ears.  O.k., this was all doable.

Yesterday, my middle one wakes up complaining of an ear ache and headache. By the afternoon she has a low grade temp and I start her on medicine. Oh, I've not been sleeping, by the way, because my oldest has been up every night needing medicine. So, now I'm groggy and I've got two medicine schedules to keep track off. Thank goodness they are old enough to help me remember.

Evan comes home from school next and immediately starts becoming destructively angry about his summer program. Uh-oh. Red flags are flying in my head. More red flags I should say, because I already complained last week and changed part of his day around due to some issues we were having, but now he is really angry.

Can't worry about it yet, because next is his speech group from 3:30-5:00. This goes well for Evan but the Mom of the other child and I talk almost the whole time about school and other summer programs, so my head is spinning, but just a little.

Next I rush to make dinner before moving straight into Evan's 2 1/2 hour ABA session and my concurrent sit-down session with our speech therapist about Evan's IEP. I had a great talk with our speech therapist and I'm so thankful that she is on our team, but she tells me some things that are hard to hear. Like that Evan probably has a language disorder outside of his autism diagnosis. It's o.k., though, as this is not unexpected news to me and I need this information before Evan's next neuropsych testing in a few weeks so that they can start to zero in on this. But this does get me closer to a new fight with the school, and she does tell me something that makes  me cry...you may have to let him fail before the school will agree to change his programming. That just stabs my Momma heart because the thing I want most for him, after good health and happiness, is for him NOT to fail.

I have to move on, though, because as I'm in this meeting, our private BCBA and owner of the company calls and texts me...he has something important to discuss. I already think I know where this is going, and since two of Evan's therapists were in my house at the time, I didn't think it was that someone had quit our case. So, I say good bye to our speech person, got Evan in the shower with the help our our therapist, and called our BCBA back. This requires bold print: our insurance company has said they made a mistake and as of today (Aug 4th) they will no longer be covering ABA services. I'm too shocked to cry this time. Shit. I call Jayme, who will sue everyone under the sun until this gets solved, and he talks me down. Mostly.

Lunch yesterday for me was at 2:45, dinner at 8:45. I had to fight fruit flies off my wine.

Today...
Evan wakes up with new aggressive anger. Yep, time to do something about school; I think I have to pull him out of the afternoon program with one week to go. I call the school BCBA and talk to Jayme.  He tells me to call our attorney and don't do anything without a paper trail. So, I called the attorney, drafted a letter and sent it to her for her edits, and met with the BCBA. This matter remains unsettled.

But, in my tunnel vision with Evan, I missed the spring window to write letters to the school principal regarding teacher placement for my middle daughter. Of course she got the one teacher I didn't want her to have, so now I have to advocate for her and met with the principal today (right after I met with the BCBA, because time is tight after all). This matter also remains up in the air. Next time, Gretchen, don't forget to advocate for your middle child. Right.

I'm eating lunch as I right this. I had planned to exercise, but couldn't squeeze that in yet today, and honestly, my window for that is probably closed. There has been no time to clean, pay bills, do laundry and everything around me looks like a disaster. I have to go make Evan's smoothie, get him from school, and then there is home ABA from the school, a decision to make about the remainder of the summer program, the letter to edit from our attorney. Crap, someone probably is going to want dinner tonight. I think we'll have ice cream.

Got to go, will follow up later...


Monday, August 3, 2015

What Happens When You Play Hooky

So, I am back from an interesting weekend. I try to get to my childhood home several times a year...the kids always have a good time and it is the place of Evan's cemetery and death fixation (hopefully this makes sense from some of my blogs last year); the family cemetery is always the place he visits first when we get to my parent's farm.

I started the long weekend with a 45 minute wait at the doctor's office for my oldest daughter who has an ear infection. We had to make a stop at the pharmacy on the way to the highway, at which point Evan became fixated on a massager...you know, one of those knobby things that you can massage your muscles with. I stayed strong and didn't buy it for him, but then had to listen to 3 hours of talking about how he just has to have one.

Then, we stop at a gas station to use the bathroom along our way. After using the potty, Evan was walking through the store wondering aloud what he was going to get. "I think I'll just get a beer." he said. In front of a long line of customers. Oh, boy...

No, we don't actually let him drink beer.

The next two days were marked by obsessive, repetitive, and irrational needs that almost always ended in tantrums. They included continued talk of the massager, his desire to catch a fish with his bare hands and eat it, and the need to throw away a large bucket of Legos so he could buy a new one because his instructions had ripped and therefore tainted the whole thing.

Fortunately, most of these tantrums were short in duration. And, as is his nature, only in front of myself and the girls.

On our drive home, there was this question: who buried your Grandpa? Sigh...this again? I explained, for the umpteenth time.

I'll add here too, that Evan has regressed in several areas this summer. Some are at school, with my biggest concern being that he is not eating. At home, he is again refusing to shower and will only wear one pair of pajamas. During our long weekend, though I had a nightly change of pjs for him, he would only wear his favorite pair, and under the circumstances I didn't have the energy to tackle the tantrum that forcing a different pair of pjs would have brought.

 Evan has been great since we got home. It's amazing to watch him drop right into his normal routines; this afternoon, he got into our house and went immediately into his own world. I suspect that it is not as easy for him to do this in places that are not as comfortable for him, but this activity is essential for him to rest his brain and center himself. I expect that much of the obsessive behavior I saw while we were gone will stop now that we are home...always a good reminder of how much work we have left to do to make him functionally appropriate in places besides our house. After the last 4 days, though, I could use some time in my own world too.

Now into the shower and clean pajamas. Wish me luck.



Thursday, July 30, 2015

Hot Lava






This, my friends, is a metal called Inconel. While in HI at Volcanoe National Park, Evan's geologist grandfather was talking about types of lava; Evan, on the periphery of our group (it would have appeared that he wasn't engaged in the conversation if you were passing us by), asked Jayme to ask Grandpa if there was anything that lava could NOT burn through.

"No," answered Grandpa, "lava can burn through everything".

"Not Inconel." answered Uncle Ron.

The conversation then turned to Inconel, a metal no one besides Uncle Ron had heard about, and then we went on our way.

Fast forward to our arrival back to the East Coast, and a few days go by until I ask Evan if he remembers what the metal is called that Uncle Ron was talking about (I'm not sure HOW this came up in conversation, but apparently this made an impression on me too). Without hesitation, Evan answered correctly.

And, his fascination with Inconel was born.

Well, we've bought him a Chop Wizard, for crying out loud, why not a little Inconel, at a mere $20 a pound. He has been waiting not so patiently for it's arrival, and he was super excited that it finally came today. Evan wants to build an Inconel typewriter...good luck with that one, Daddy (Evan's go to build-it and technology guy).

Jayme jokes that we are probably on a government watch list now for purchasing it, since it holds up to such high heat that it's used for rocket-launching applications. I did find that it is also used in NASCAR and Formula One exhaust systems, so perhaps we'll take up car racing.

And, in case you are wondering, Inconel hurts when you hit your sister with it...we've tried that use out already.

Tuesday, July 28, 2015

Summer Living

I long for the simple summers that we had when my kids were really little. When our biggest dilemmas were where to go on any given day, and would I pack lunch or buy it? The days when the most stressful thing was figuring out when everyone was going to nap. I am a stay at home Mom...my life was not rough.

Then, Evan got a little bigger and life got harder. When he was 3, our summers started to fill with speech therapy. When he was 4, summer school started in addition to speech therapy. When he was 5, we added occupational therapy to the mix. At 6, our summers are filled with school, speech therapy, and 5 days a week of ABA therapy (karate has replaced occupational therapy for now and is once per week).

This is the first summer that Evan has a notion of what "summer" means. He is realizing that it should mean "no school" and "fun things" and this makes going to school (a.k.a. camp - and, please, don't call it what it really is if you see him) difficult.  And then our afternoons and evening fill with home therapy and there goes the play dates, evening concerts and movies, picnic dinners, or long days at the beach.

I'll be honest here though...my spontaneity and sense of adventure started to wane about 3 years ago, when taking Evan out was nearly impossible. Now that he is older, and some trips are actually doable would it not be for his schedule, I don't even know what to do any more. So, as much as I complain about being a hostage to Evan's school and therapies, it actually makes my life easier. Are you wondering where you can find me these days? Home - I'm always at home.

So, welcome to one of the internal struggles of raising a child with autism. How do you balance letting Evan be a kid with teaching him how to be a kid. When you are in a race against the clock, it's hard to not spend every moment in therapy or thinking about therapy or researching the next therapy. His days of learning are essential to him gaining access to an independent adult world. He will not be able to reinvent himself in college or as an adult if we don't give him the skills to succeed now. Will he be able to drive a car? Will he manage his own money, or will his sisters take over that task when Jayme and are gone? These are the questions that we have to ask ourselves now, so that we give him the foundation that he needs to do these future skills. The autistic brain is most flexible (and therefore the most amenable to learning, according to research) between the ages of 2-5. Evan was not diagnosed until 4 years 3 months. You can see our dilemma.

Fortunately, we have surrounded Evan with amazing private practitioners that understand this struggle and are more than accommodating should we need a night off. In fact, I'm about to play big time hooky and skip three ABA sessions and a morning of school so that we can enjoy a long weekend away, and I'm trying not to feel guilty about it. And, how awesome is Evan's speech therapist - part of his speech therapy took place in our yard while 5 kids played on the Slip n' Slide. Yep...that warmed my heart and reminded me of the care free afternoons that I used to have.

It's summer time, and the livin' is not so easy, but fingers crossed that I look back on this time 10 or 15 years from now and not regret a second of it.

Saturday, July 11, 2015

Happy One Year Blog-iversay

July 8, 2014 was my first blog entry, http://theasdchronicles.blogspot.com/2014/07/am-i-blogging.html

Followed shortly by my second entry, http://theasdchronicles.blogspot.com/2014/07/the-beginning.html

One year later, I find myself thinking I wish I'd done this sooner. I really, really enjoy chronicling our crazy life, and I think it provides good perspective to our family and friends. You know all those Facebook posts that say people only post the 2% of their lives that they want you to see, and hide the other 98% (or some such thing)...well, I'm airing our worst dirty laundry out there for you all to see and I don't regret one second of it. It turns out that writing is a bit therapeutic for me, and along the way I've reconnected with old friends, made new ones, and have realized that you don't have to look too far to find someone connected to autism.

I love to read other people's blogs (and sometimes I'll share them on my FB feed) that make me go Oh my gosh, I've TOTALLY been there before, or Uh-huh, I can completely relate to that. So, you can imagine my joy when I get that same feedback from readers of my blog. Sometimes I write about what I think is the craziest thing that no one else has to deal with, and the next thing you know, I've got a bunch of shared stories from my friends. My favorite example of that is this blog: http://theasdchronicles.blogspot.com/2015/05/as-seen-onl because as Evan was enjoying his Chop Wizard, I heard about other's bacon bowls, lint lizards, and magic bullets; it still makes me chuckle.

One friend nicely told me one day that I put to words what she goes through and it makes her feel good to know that she is not alone. Wow, that made my day. It wasn't my purpose when I started, but I find myself writing now in hopes that someone new may read my blog and will feel the way my friend feels; knowing I give voice to other people's struggles is an incredibly powerful feeling, and I'm thankful that I am able to do that.

Sometimes, I'll write a post and it will really resonate with people when I least expect it to. An example of that would be this post: http://theasdchronicles.blogspot.com/2014/12/teaching-language.html. My cousin made mention of this post at Christmas and told me it made her emotional because she could totally relate to the way I feel that what my children call me is part of my Mommy identity. I was surprised that this evoked such emotion in someone else, and was moved by that, but even more so when her husband, a PhD in psychology, mentioned that from a professional perspective, he had never considered the parent point of view in such a way as I had described it. Based on that discussion with him, I've since shared this post with Evan's ABA team so that they can have, hopefully, a similar experience.

And, of course, there was this post: http://theasdchronicles.blogspot.com/2015/04/behind-scenes.html
that was reprinted on http://themighty.com/. I wrote that piece in about 10 minutes, totally in the moment of my emotions after Lily's band concert. I'm finding that my best pieces are written raw, when I'm feeling angry or sad or happy or frustrated, etc. If I think too much about a topic, I can't write about it well - is this a common writer thing?

Many thanks to all my readers, those I know and those I don't. I'm thinking about making a FB page for this post, as there are so many funny things that happen in our life that I can't even capture on the blog. Like, how yesterday I asked Evan about doing something, and he responded, "No, that is so last Tuesday". What?! LOL!! It turns out that comment is from Evan's latest binge watching obsession Phineas and Ferb on Disney XD. Oh, this kid is so funny...and frustrating...and amazing...and maddening...and worth every ounce of effort we put into him. Thanks for coming along on the journey.

Friday, July 10, 2015

BCBAs On A Mission

We had quite a fun ABA session today...our therapists went all covert and stuff, hiding in bushes and scaling our rock wall (no, I'm not joking).

Before I explain more, you need to understand what led to this point:
     One of the hardest things about Evan's autism is that it remains relatively hidden to everyone but us. He has had very public meltdowns and you'll often find him with his headphones on, but otherwise he is a very well behaved, polite boy. You may notice that he might ignore you when you talk to him, and if he does talk to you long enough then you might notice that his speech is a little bit off. If you are 6 - well, to be honest I have no idea what his peers think of him. If you are younger than 6, Evan wants nothing to do with you and he hates babies. If you are a tween girl, then he hates your noise. If you're looking at him from afar, then you probably think nothing is amiss.
     Though his primary behavior therapist has seen some non-compliance and tantrum activity in our home, overall Evan is very well behaved when she is here. And, after 6 months of work with our team of therapists, Evan is more compliant with us, is pretty much poop trained (finally!!), and is sleeping in his own room.
     Unfortunately, he will fly off the handle in a second, gets extraordinarily angry, head bangs, bites, and is destructive within our home when it's just the family, and you'll find at least one of those things happening on a daily basis.

If a tree falls in the woods and no one is there, does it make a sound?

    Of course, but how do you prove it? Hidden cameras of course :)

So, enter the covert behaviorists.

First, we spent two previous therapy sessions gathering data on Evan's compliance to a certain demand (cleaning). In a nutshell, he was 100% compliant with the therapists when I wasn't present; he was 100% compliant with me when the therapists were present but had some verbal protests, though not of any statistical significance. The next step was today, which was testing him on his compliance without him knowing that the therapists were present.

To do this, we set up a video baby monitor so that they could see him, and then I had my cell phone with an ear bud so that they could hear him better and give me instructions and feedback. I did laugh out loud when I heard that they were hiding in the bushes, but once they were fully set up outside the house, we got started though they did need to move inside to our in-law apt/my business headquarters once the battery to the video monitor started to run out. We ran the exact same program we used the previous sessions, with Evan being given verbal demands to clean, with only me present in the house. Once that program ended, one of the therapist came into the house to "drop by" and watch Evan do some of the same tasks "to see how well he was doing". She then left, and we once again gave Evan cleaning tasks as instructed by me.

Though I don't have the formal data summary, in my opinion what we found was compliance during the first session with increasingly agitated verbal non-compliance (i.e., Evan complaining about what he was doing, but doing it nonetheless). When the therapist came in, he was 100% compliant, chatty and happy the whole time. When she left and we began our third session, he became increasingly angry and destructive, ultimately refusing to do the task asked of him and running away. Oh, and he told me I was the worst mother ever.

Despite the contrived circumstances, what the therapists were able to elicit was pretty much the response that Evan has with us that has not been previously viewed by them. With this information, they can then customize an effective treatment strategy that we'll begin next week, and will again involve them coaching me through contrived demands from a remote location so that Evan does not know that they are here. It is them teaching me to teach him how to appropriately respond to things that are not pleasant to him. I couldn't be more excited to get this going, and I think the scientists in our behaviorists are super giddy right now with their new found data and treatment ideas.

As we were discussing all of this after the sessions had finished tonight, I mentioned that the fact that Evan was compliant and cleaning for me for so long was a huge improvement over what would have happened before he started ABA in January. Based on this statement, and the data gathered today, the BCBAs felt strongly that the prognosis for Evan is excellent, and that with the proper training and teaching we will see huge improvements in his behavior. As long as I don't think about how much work this is going to take, hearing those words makes me very happy (though don't forget, we still have sensory processing disorder, speech and language delays, and learning disorders to fit into this equation).

At this moment I am feeling incredibly thankful to have found, thanks to a friend who I hope recognizes herself in this statement, such an amazing group of therapists that are committed to the scientific process of behavior, listen to what we tell them, and recognize Evan's potential and what an amazing boy he is. Many thanks, my super ninja team.