Thursday, December 22, 2016

Universal-ly Autistic

Evan in front of The Knight Bus at Universal Studios.

So, we've just returned from a short trip to Orlando, Fl. We won't be going back anytime soon.

When my husband and I first started talking about this trip, we were hesitant to pull the trigger...we rarely go anywhere; in fact, we often don't even leave the house on weekends except to go to Evan's swim lessons and to shuttle the girls to wherever they might need to be. We've become hermits, and it's directly related to Evan; he spends so much time being unhappy, that we like to give him as much decompression time at home as we can. We realize that this approach is not the best and that we need to push him more to get him out of his comfort zone, but we get tired and he gets tired and it's easy to keep him where he is happy...

Ultimately, we decided that we should make the trip and do something different and fun, and we honestly thought all the kids would love it, especially our Harry Potter loving kids. We chose to only purchase 2 days of park tickets even though we had 4 full days in Fl; we knew that Evan probably wouldn't tolerate more than 2 days, and then we'd play it by ear with one of us going somewhere of the girls choice while the other stayed with Evan.

In hindsight, we should have done several things differently, but there is no Monday morning quarterback in real time life. Autism is such a funny, fickle thing, and I find myself frequently - almost daily - wondering if I've done the right thing with Evan. If only I had brushed his teeth 5 minutes earlier, for example, then he would not have melted down. If I had answered him in words instead of a 'hmm',  if I had offered him this food and not that food...
...I could have...
                        ...I should have...
                                                  ...I would have...
                                                                           ...next time, I'll...

I'll spare you the list of could haves and should haves here, and sum it up by saying that our trip to the parks with Evan were terrible. We tried Universal first, and that day I was carrying him before we even made it into the park. Evan said it best with this quote: that was not a happy place for me.

Two days later, we tried Legoland, and that went even worse. It didn't help that our day began with a compliant from our downstairs neighbor about the noise Evan was making while playing his imagination (his way of regulating himself, which includes lots of physical movements); he got very mad about having to be less physical and/or moving his play to another room, which led to an hour long tantrum that caused me to miss my run (hence, add a grumpy Mama into the mix). Once in the car we were able to snap him out of his funk, but the car ride to Legoland was a tad too long and by the time we got there he decided he wasn't going in and wanted to go back to our condo. After telling him he would suffocate in the car if we left him there alone (really, I'd had enough and let's just all be honest about what happens to living things in a hot car), he allowed me to carry him in. Here is a little picture diary of that day's adventures:




 The last picture is of Evan and Jayme in the quiet room at Legoland; it was our last resort to stretch out his day so that the girls could do as many things as they wanted to do. Ultimately, Jayme had to take Evan to the car where they waited patiently for us. 

Though Evan enjoyed the pool, this trip was by far the worst trip we've ever had with him. We knew the parks would be busy and overwhelming, but we never expected them to be such an epic failure. We carried him the majority of both parks, and struggled to get him to eat or drink.

We aren't park people...none of us like noise or crowds; one of the Harry Potter rides had a 90 minute wait, and the girls said "no thank you, not worth it". However, with the exception of Evan, we were all able to work through it and have fun. Evan's reaction was so profoundly abnormal that it was very difficult to remain positive and not ruin the experience for the girls. I think we did a pretty good job; personally, I just powered through carrying him and focused my energy on the girls without giving too much control to Evan. Every time he complained, we acknowledged his feelings and I would say to him, "I'm here to help you, that is my job as your Mama, and you're doing a great job keeping it together". 

I learned more than a few things from this trip, but here are the important ones: (a) someone needs to mass market a backpack made to carry heavier children/lighter adults, and (b) always stay at a resort that has a bar at the pool.

Because this trip and it's painful nature is so fresh in my mind, I was struck by some words Evan wrote in a poem that I viewed at his school today:
Evan
Playful, funny, smart
Son of Jamie and Gretchin
Who loves Michael,
fish, science
Who feels good, happy,
normal
Who finds happiness in
Science, snow, playing
Who needs food
Who gives presents
Who fears bees, underwater, volcanoes
Who would like to see 
Canada
Who enjoys friends
Who likes to wear clothes
resident of Boxford
Can you guess the line? Look for the word normal. Gosh, that made me pause. Good, happy, normal. Was he coached to use these words? I hope not. I really, really hope not. As much as we struggle, as much as I hauled him around for hours with my arms shaking from fatigue and sweating up a storm - if he can navigate through life and feel good, happy, and normal, then...yeah...it will be o.k. 

But, let's just stay away from amusement parks for now ;)

Sunday, December 11, 2016

Evan Turns 8!

Today is Evan's birthday; it's hard to believe that he is 8. The house is quiet, as we have divided and conquered again with Dad and middle sister, Shayna, at big sister Lily's play. Evan hasn't left the house all weekend and has been in the same pajamas since Friday. He asked to cancel his swim lesson, which normally we would not do, but as it is his birthday we felt inclined to appease him.

SO, this means that he has done nothing all weekend. Nothing. Just the way he likes it. He didn't want a birthday party and he asked for his birthday dinner to be brought in (from our favorite Japanese restaurant). No cake (sugar cookies with sprinkles only), no singing of "Happy Birthday". In other words, it's the complete antithesis of how we celebrate his sister's birthdays.

 It's quiet.

It's nice, actually.

It's completely socially dysfunctional.

It's o.k.

Today, it's o.k....

                      ...Happy Birthday, Buddy.



Friday, November 25, 2016

The Long Hiatus

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

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

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

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

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

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

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

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

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

:)

Friday, September 16, 2016

How's It Going?

We've finished the first two weeks of school and I've had lots of people ask how Evan is doing (thank you, by the way...I appreciate the interest and the ability to talk it through). Here are my thoughts:

  • The bus is going GREAT!! I think this is one of Evan's favorite parts of school, though Shayna tells me that he sits by himself in the afternoon and gets lost in his own little world. He wears headphones the whole time, and my guess is that it acts as a deterrent for others to engage him in conversation. I think he really enjoys participating in something he watches other kids do, and he hasn't asked even once for a ride to or from school.
  • School is not so great, and he cries every morning. Most of his complaints make little sense to us, but we think that he doesn't like his SpEd teacher/classroom and he would prefer to stay in the regular classroom instead of being pulled out. He's had some trouble at recess with some other boys not giving him a turn on a piece of equipment, and I've made his teacher defensive already when I sent an email stating that Evan was afraid to ask his assistant for help on the playground because she was talking with other adults. While I admit that Evan's perception of events is often distorted, his information is the only thing I have to go on, so I reported what he told me and asked them to let his assistant know that he needs help. I'm pretty sure the school is throwing darts at my face already.
  • I've learned that not all of the information on Evan made it to his new school, and so I'm figuring out by trial and error what is missing. First, I realized that his daily communication sheet was never discussed, and then I got the new school to do a daily sheet but then it didn't get sent home to me, though it took me two days to figure that out. The recess issue prompted me to ask if his recess plan made it to them, which - shocker - it did not, so that got sent over last night at about 8:30. What else is missing? I don't know, but I'll probably figure it out the hard way.
  • Evan has missed two full days of school already for his neuropsych testing, and has to miss another day next week. His testing is going well, if scoring poorly is your desired outcome. I'm able to sit in on his testing, which I've never done before, and it is fascinating and heart breaking. I look forward to the results because I think, for the first time, we are going to get a much clearer picture of his academic limitations and that will help us get him the services he needs in school. Here is a great example of how his mind works: he was asked to find the common factor in groupings of three; one of the groupings was banana, orange, and apple. What is the common factor? They are all fruit. Evan's answer? "You can peel a banana, you can peel an orange, and you can try to peel an apple." The significance of his answer is that he is unable to see the big picture in even the simplest of things; I could go on with some of the other observations I've made, but I'll let the doctor give her formal opinion before I cement my own. Suffice it to say that, this kid is struggling to make sense of his world around him and the amount of effort he must put forth to hold it together at school is staggering. He said to me last week, I'm tired of pretending to be happy - cue heartache here. 
  • The start of school meant the start of his fall therapy schedule, which currently only consists of speech and OT. I'm actively trying to find a CBT and ABA therapist/group for him, and at one facility I'm in the middle of a 5-10 business day wait to have access to the intake paperwork - just the paperwork, which doesn't even mean that any of the docs have openings or would be a good fit. Crazy. The fee to submit paperwork, by the way, is $95. Again, this doesn't even guarantee us a spot...this is just for the privilege of having them review the forms. CRAZY.
That's all I've got. I'm tired of tears and crying, of hearing Evan describe himself as a loser and a jerk. This will pass, but it's mentally exhausting. Back to school can be SO hard for many families, and entering a school system where I know no one is more worrisome than I had expected. I am looking forward to Evan's school open house next week, though; we got a sneak peek from his teacher, who sent a picture of the bulletin board covered with self portraits...Evan drew his future self, complete with a cavity in one of his front teeth...I sure hope someone at school is appreciating his sense of humor, at the very least.

Happy crazy September, everyone :)

Friday, August 26, 2016

The Doldrums of Autism

Days like these are when I really  need to do a Facebook page for my blog, because I've written the last two days and I don't want to inundate people with posts, but when inspiration hits I've got to go with it.

The picture above is Evan, at 6 pm, still in his pajamas.This is a day where nothing happened. Not. One. Thing. Happened.

Oh, there was the 1 1/2 hours Evan spent in his room just sitting on his bed, mad at the world because Jayme told him to remove a window blind cord from around his neck. The entirety of the rest of the day has been spent either watching TV or playing his imagination until finally at dinner time he decided to move on to video games.

I tried a dozen times to get him out of the house or engaged with me, and it just wasn't happening. Why don't I force it? Well...this is a pick your battles type of situation, and to involve him in any activity would have led to a meltdown that I didn't feel like dealing with. I've had to drag him out of the house several times this week, and because I wasn't forced for any reason to do that to him today, I opted not to. I know he needs days where he can completely decompress and withdraw. Unfortunately, these days leave me restless with wanderlust. If I could do anything today with my kids, what would I do? I haven't been to the beach yet this summer, could I make it there? Could we do an amusement park? The movies?

Boo-hoo...there are worse problems in life, but I'm home alone with a child that won't interact with me. As in - won't interact with me at all unless he is asking for food or permission to play his imagination. The house is quiet. I've cleaned the pool, folded 3 loads of laundry, cleaned a bathroom, unpacked some boxes, did the dishes; the paperwork waiting for me has been hidden in the office, inaccessible when Jayme was working today, and inaccessible now because Evan is there playing on the computer. I've reached my mental max on house things. I've binge watched Tiny House Hunters on HGTV. I had dinner at 5 because the girls and Jayme are all gone now and it's just me and an apparition of Evan floating through the house being seen only when he wants to.

This is an autism quiet day, which sounds like it could be nice, but it's just so darn dysfunctional that it messes with my head. I feel like I lack direction on these days, because even Evan's meals are all on their own weird time schedule, and I'm floating from one 'keep me busy' task to another. Thank goodness I left the house this morning to drive my middle daughter to dance, and my oldest should arrive home soon after a day with my Mother-in-law. For now, I think I'll sit for a bit outside and try to quiet my brain. before I do my one thousandth check in of the day with Evan in a bit.

Weird. This autism stuff is Just. So. Weird.

Wednesday, August 24, 2016

When the Right Therapy Becomes Wrong

Autism is the gift that keeps on giving...over time needs change, behaviors change, providers within a company come and go. As a newbie autism Mom 3 years ago, I thought my hardest struggles were over. Ha! It turns out that raising a child like Evan, much like raising a neurotypical child, requires constant effort.

So, I'm breaking up with my ABA provider. Without a doubt, the people of this company were life changing for us; under their supervision Evan became potty trained, started sleeping in his own bed, learned to tie his shoes and leave our house if there was an emergency. There were many subtle changes too, that anyone outside of our family might not notice, like the (mostly) appropriate use of "wh" questions, and increased compliance with transitions. One of the very first things we worked on was Evan's response when I call his name. Seriously. We had to teach him to respond to me. It's actually amazing to think back on the last one and a half years and see the progress that he has made.

However, starting last winter, Evan really began struggling with the amount of therapy he was having and responding very negatively to having ABA in our house. This culminated in the spring when Evan reached a point that I considered to be a crisis, and concerned me to the point that I, lover of all things therapeutic, cancelled everything to give him a break. We started adding his therapies back in slowly, but ABA continued to be a struggle.

Fast forward to this summer, where after months of waiting, Evan had his first (because it won't be his last) psychiatric appointment. I really liked the doctor, who works directly out of Mass General's autism center, and after spending 1 1/2 hours in his office I left feeling better than I had in months in regards to Evan's mental health.

Yes, I said it - mental health. My 7 year old is struggling with depression. Let that sink in...he's 7...how did we end up here?

If you think people keep autism struggles close to the vest, I'm here to tell you that mental health is even worse. I was told last spring by the director of Special Ed in our middle and high school that mental health struggles in their students is at crisis levels, that by March of the past school year 6 kids had attempted suicide. O.k., parents, lets solve this by sweeping it under the rug. Excuse me, but REALLY???! How many suicide attempts will it take before the community has an open and honest conversation about the mental health of our kids? More than 6, apparently. If 6 kids in our district got meningitis, do you think we would know? If 6 kids were hospitalized after drinking too much, would that make the newspaper? I could go on, but you get the point, right? It's time to stop pretending this doesn't exist, and I intend to make some headway on this topic in our school this year. From my perspective, I know that kids like Evan are three times more likely to commit suicide, so you better believe that his mental health and happiness is my #1 priority.

Off my soap box...the recommendation that came out of our psychiatry appointment was for a new (to us) therapy called Cognitive Behavioral Therapy. According to WebMD, "At the heart of CBT is an assumption that a person's mood is directly related to his or her patterns of thought. Negative, dysfunctional thinking affects a person's mood, sense of self, behavior, and even physical state. The goal of cognitive behavioral therapy is to help a person learn to recognize negative patterns of thought, evaluate their validity, and replace them with healthier ways of thinking."

Our doctor nailed it; Evan feels his emotions so intensely, but does not have the tools to process them, and so CBT seems to be exactly what he needs at this time. So, where does that leave ABA? Well, his provider and I had discussed transitioning him to a social skills group, so I've been waiting for that to be formed. In the meantime, we were continuing 1 time per week on maintaining his current skills. Last week, however, he reacted so badly to his therapy session that I asked for a meeting with his BCBA with the intent of changing his plan, because, frankly, I just can't keep putting him in the position that he gets so mad and upset...it is heartbreaking. Therapy is supposed to end things like self-harm, not be the cause of it, yet there was Evan in the middle of his session banging his head in anger. Yep, we are done with that.

Fortunately, our BCBA was on the same page. Unfortunately, the promised social skills groups are actually not going to happen, so it's time to part ways to find a new company whose practice area aligns with our current needs. Now I find myself with the need for not only a CBT person, but also an ABA provider; with the kids home for the summer, I've got little time to research and interview potential people/companies, so there will be a bit of a gap between services (which I know Evan won't mind, and honestly, neither will I). I've got his next neuropsych testing coming up in early September, so not only do I have mountains of paperwork to pull together for that, but I've got 5 appointments within a 3 week span to get that testing completed...you can see how staying on top of all of these issues takes A LOT  of time. It's worth every second.

I'll be honest, I do feel a bit overwhelmed by the change in Evan's therapy. His success is literally at my discretion, and that is quite a responsibility. This is not like picking your kids private music teacher; I've said it before - the skills being taught to him are literally life changing...your kid can succeed in life without piano, my kid won't be independent and successful in life without being taught specific life skills. In addition to finding him new private therapists, we we are entering school in a new town where I know nothing about any of the school based providers. Our district also has a brand-spanking new BCBA, who has met Evan only in passing and probably couldn't pick him out of a crowd. I'm glad he's excited for 2nd grade, because my stomach is in knots.

Amidst all this change, I'm just doing my best to keep moving forward. Our goal this summer with Evan has mostly been just to keep him happy and to let him be a kid in the way he knows how. Stay tuned for the next chapter in the ever evolving needs of autism...

Tuesday, August 23, 2016

We Moved...An Update

Our family has recently moved to a new town and new home, and lots of people have asked about how Evan is adjusting. I keep saying, I have to blog this, so finally...here is a brief update. I've been super busy, and relatively uninspired to write, so these thoughts are not my best.

Evan is doing great. He and his sisters adjusted to our new surroundings better than my husband and I expected. We had done a lot of ground work with Evan, taking him several times to our new house, and I really think that made the transition easier. Admittedly, we were all a bit sad to say goodbye to our last house, the only  home that Evan has known. About a week after we moved he asked me, "are we going to live here forever?". I said we were. "We're going to live on vacation forever???", he replied.

So, yes, there was a bit of a lack of understanding about the finality of our move, but that was really only a small hiccup. He has had some really tough days, but we expected that, and we moved past those with relative ease. He is super excited for his new school, which is SO interesting, and raises little red flags about his happiness to leave his last school behind (this is actually not so surprising, as I've written frequently about his school struggles). He also wants to ride the bus, and I might just let him; I'm sure I'll come back to this topic in September, but for now there are lots of conversations happening about making this possible for him.

Thanks to all of those who were thinking of us during our crazy summer of change, and who have checked in to see that we are settling well. Now I'm just trying to unpack our house, get everyone ready for school, and enjoy the last little bit of summer.


Friday, July 29, 2016

To The Mom Who Wrote "I Still Carry My 5 Year Old"

To The Mom Who Wrote "I Still Carry My 5 Year Old Son",

I still carry my 7 1/2 year old son.

We should be friends.

We carry our sons for different reasons, but the responses we get are similar. And, like you, I don't really care what other people think, but...you know...sometimes you just wish people had the whole story before they judge you.

My son is not a bolter, though he'll run into traffic if startled by a loud noise. He is tactily defensive and will not regularly let me hold him, or even hold his hand, so my best defense when we are near traffic is to put myself between him and moving cars and never let my guard down.

No, I don't carry him for the reason that you carry your son. I carry mine because he'll reach a point of exhaustion and will be unable to walk on his own. Sometimes this can happen after a long time out and about, but sometimes it can happen after a short time. You can't see his low muscle tone and poor endurance, but I'm here to tell you that he's got both of those. With great periods of intense, physical exertion comes the antithesis, and when he reaches his low points he'll fold himself up on the ground and completely retreat within himself. Sometimes, the world just gets overwhelming regardless of his activity level and he simply cannot function. This is what takes my breath away, this complete withdrawal from the world around him. What am I to do? Sit at home and never go anywhere? Abandon an activity that we may be invested in? Maybe. Maybe if he were my only child and I had nothing else to do. But, I have two older children and they give up so much as it is.

So, I pick him up and carry him.

This is me carrying him on a hike the day after running a marathon:
At the time, one year ago, he could still squeeze into a baby backpack (safety rated to 70 pounds - there are no products that I could find that are actually intended for his height and weight, much like finding diapers to fit a 6 year old). His mid back is where an infant's head would be, so though the way I used it is not as it is intended, at least I was able to distribute his weight enough to comfortably make it through our hike (by the end he had fallen asleep).

A year later, he is taller and now 58 pounds. This was us just last week:
When we stopped for a bathroom break, he said, "I wish you had the strap thing"; I knew that he meant he wished he could be on my back instead, so we switched positions:

Look. Look close.

This is not a lazy child. He is deadweight in my arms, with his head resting on my shoulder. Sometimes he'll put his face in my neck and breathe in my scent. This is not a burden. This is a gift. It's in these moments that he allows me to touch him. This is how he shows me love, how he tells me, without words, that he needs my help. Even when I am carrying him because he refuses to go to school and he is raging mad, he'll go into my arms and put his face on my skin and inhale and I think ah...this is PEACE. And, because reaching him can sometimes be so, so hard, I feel proud when I can finally offer him something he needs.

So, I carry him.

I'm also proud of myself for being physically able to lift and carry him for good amount of time. Like you, Mom of the 5 year old, I worry that I can't sustain this forever. I started CrossFit a year ago to become a stronger runner, but quickly realized a greater purpose. While most at the gym are there to become stronger and fitter (and I have those goals too), I am there to prolong the amount of time I can carry my child. I know that I can comfortably squat more than he weighs (I could push press him too if needed, but just barely) and that should buy me years of, at the very least, piggy back rides. I'm fairly certain that the 20 somethings next to me are not wondering how the weight on their bars equates to the weight of carrying another person. This is my burden, but one I choose. Yes, he is going to get taller and older and it will get more awkward, but as I wrote a year ago...if my choice is to make things accessible for my son or not, well, there is no decision to make because the answer is easy.

So, carry on Mama, carry on. You are not alone. I've got 2 1/2 years on you, and I'm not ready to put my son down yet either. I will carry him as long as he needs, as long as I can. Because, as you already know, if you think the need to protect your children is strong, the need to protect your children that cannot protect themselves will make you dig deeper than you ever thought you could.

Carry on...

Signed,
Another Autism Mama Just Carrying Her Child To Get Through Life






Friday, July 8, 2016

Every Day Life Looks Like This...

...when it's time to take a shower. You'll find Evan in the corner of our bathroom with his ears covered when we turn the shower on.
Just a little glimpse into our lives...

Tuesday, June 28, 2016

Running for Mayor

Last night, Evan told Jayme that he should run for Mayor. I'm not sure the exact conversation, but they shared a little dialogue about the subject, and then Evan moved on.

Today, in the car, Evan declared that he would like to run for Mayor. I said, "sure, Buddy, maybe when you are older".

"I want to be a kid running for Mayor", he replied.

Evan then starts pumping his arms really fast and kicking his feet.

"TIME ME!!", he yelled.

I chuckled and shook my head and tried to explain the expression "running for Mayor". I wonder what he thinks a Mayor is, because clearly he things running towards it is a great idea.

This is just another great example of the tricky nuances of speech that we take for granted but that he, like many people with autism, take literally...that he used in a contextually appropriate manner, but didn't understand.

It's like last week when Jayme told him to "keep his eyes pealed" for something, only for Evan to grab and pull on his eyes after which he asked if they were pealed.

Just another day in the funny little world of autism.

Tuesday, June 21, 2016

Summer Sun

While I love the long days of summer, I dislike the disruption of Evan's internal clock. I've mentioned before how he has essentially no concept of time, and while I know that this is difficult for any young child, it's different in an autistic brain (you'll have to trust me on this).

Evan monitors his night time routine by the light in the sky; that means on long June days, he is not ready to go upstairs until about 9pm and is in bed around 9:30. He is up at 6. No, it's not too big of a deal, but we are talking days upon days of losing 30-60 minutes of sleep, so that starts to add up. If we try to get him up stairs earlier, he says, "but it's not nighttime yet", or "it's not dark out yet". Last night I managed to get him in the shower at 8:30, which was great, though he still wasn't ready for bed until about 9:20.

I brainstormed this a little bit with my sister the other day...we talked about teaching him what the numbers on the clock mean in terms of the time of day (i.e. 8:00 is when we go upstairs). The problem, and why we haven't done it, is that our bedtime routine is quite rigid and only happens when he is tired. This is opposite of what we did with the girls, and how most people put their young kids to bed....you establish a bedtime, and you develop your routine around that. We establish he is sleepy, and then do our routine. If he isn't tired, our routine doesn't work; he does not understand that even though he might not be tired, he still needs to go to bed. Getting in his bed is only successful if he is on the verge of falling asleep, and after going through intense sleep intervention with him a little over a year ago, I am hesitant to make any changes.

Daylight savings time changes are usually pretty seamless for us, because his body is adjusting to the changes in the sky, not the changes on the clock. He is probably closer to a primal body response to light than most of us, which is not necessarily a bad thing; it just leaves little down time for Mom and Dad during summer nights, and there are days when I would like to actually sleep past 5:30 or 6.

Sleep issues are very common in people with autism, and we are quite lucky that Evan sleeps as well as he does. I do think he wakes at night but doesn't alert us to that fact. My older daughter does this too and it's quite common in kids with anxiety; I had no idea she was regularly awake for a length of time in the middle of the night until she was specifically questioned about it by a doctor, and recently Evan mentioned something similar to a doctor that makes me believe the same is happening to him.

Every year I'm fascinated (and frustrated) by the influence the sun has over him. It should be interesting (and frustrating) to see how this plays out during his teenage years. Like most things I blog, I want to memorialize the things we experience with Evan that are so different from our neurotypical kids, but I'm guessing part of our sleep journey will resonate with someone out there.

Just another interesting quirk to add to the pile...




Saturday, June 18, 2016

16p13.3

16p13.3

This is Evan's genetic deletion. Evan is missing the p (short) arm of chromosome 16 within the 13.3 band. According to our genetic testing company, "it is approximately 169,000 base pairs in size and involves one gene called RBFOX1. Overall, the human genome contains over three billion base pairs of DNA and approximately 20,000 genes."

And, for those who had human biology eons ago, we each have 46 chromosomes that come in 23 pairs, one of each pair from your mother and father. So, on the short arm of chromosome 16, Evan has only "one copy of the involved chromosome instead of the expected two".

Huh.

Let's keep going...

RBFOX1 - part of this deletion includes the RBFOX1 gene. Again, according to the testing facility, "genetic variations in this gene have been suggested to increase a person's risk to develop autism spectrum disorder (ASD), developmental delay (DD) and possibly seizures. However, there are also studies that suggest that genetic variation in RBFOX1 do not cause developmental or medical concerns."

"Because of the conflicting information about the RBFOX1 gene, the clinical significance of this deletion for Evan is currently unknown."

O.k., so my mind is racing as I try to process this information. Let me start by saying that in my opinion there is nothing negative here; if anything, I feel like I've just gotten actual genetic proof of his autism, even though there is not medical significance to back this up. There will be one day - I just know it. Evan has exhibited symptoms since birth, and Jayme and I have always believed that there are genetic reasons for his ASD diagnosis. I actually feel a sense of relief with the results that we got because there is actually something wrong, and not that I have to prove to anyone that Evan's autism diagnosis is real, but if I had a penny for every time someone said, "I wouldn't have guessed that he has autism...".

Genetic testing is shockingly easy in this day and age. Even 3 years ago when Evan was diagnosed, our insurance company wouldn't have paid for the testing and it required a blood sample. Now, it's as easy as a cheek swab and cost us nothing (beyond our crazy insurance premiums, that is). We finally had him tested at the encouragement of his neurologist because, she said, there may be abnormalities that will help guide his medical care. Though his results are technically inconclusive, what we do know is that he has a genetic deletion consistently identified in others with ASD and one day, maybe next week, maybe in 10 years, the understanding of this deletion may pave the way for things like early diagnosis and gene therapy that could literally change the course of someone's life. This is our hope.

So, what does this mean for the rest of the family? A genetic deletion can happen in one of two ways; it can be a de novo deletion, or one that happens by chance, or it can be inherited from a parent. With a de novo deletion, there is less than a 1% chance that our other children also have the same deletion. However, if the deletion is inherited, there is a 50% chance that the girls have the same deletion, but because there can be such variability in genetic expression, it is not uncommon for siblings to have  different clinical features. Our 12 year old has expressed the desire to get tested to see if she also has the deletion, and we've already told her yes. We've not had the conversation yet with our 10 year old, and we'll test or not test her based on her wishes, but I do think it is important for them to know, especially as they get older and start thinking about their own families. Even if they have the deletion, it doesn't mean their children will get it, and even if their children get it, it doesn't mean that they will have autism. But, eyes wide open here - they live in a house with a sibling with autism and see first hand what that means...it should absolutely be their choice as to whether or not that genetic risk is worth taking for them. I'm sure there are many that would disagree and that is fine, but disagree from a position of knowledge, not from a theoretical position of what you think living with autism is like.

Science is so awesome. I love living near institutions that are involved in research, both that we can be part of actual studies and take advantage of cutting edge findings. There are so many unknowns in autism, and to have providers that understand that and are willing to bank Evan's information for future use (for him that has included a full immunological panel and genetic testing) is pretty amazing. Many of you know that I fundraise for autism research, and this is why...what they discover about autism in the coming years will directly impact my family's lives, and I plan on being an active participant in making that happen.


  

Tuesday, June 7, 2016

Tide Pool Boogie

Today was the first grade concert, the Tide Pool Boogie (to be capped off with a tide pool field trip on Friday). Today was a tough day to be first grader that doesn't love crowds, loud noise, a change in routine.

I've written about days like this before so I won't go on and on, but it warrants a small blog to mark this memory...to put words to the struggles of other special needs Mamas - because this day was hard for me too, and I wasn't alone.

The tie-dye in the picture above was the shirt Evan was supposed to wear today; I helped him make it at school last week. He chose the colors because they reminded him of poison. No, I'm not sure where that came from but in my attempt this morning to get him to wear it I (shamelessly) told him he could pretend that he was shooting poison on the audience. That suggestion got me a smile, but not much else.

I've been in contact with Evan's teacher several times regarding today's concert, as it is well known that situations like this are among his least favorite. I encouraged them to have him practice as tolerated and to have him wear his headphones, and we agreed that he would participate in only one of the two performances.

So, in he walks with his class with his headphones on...the only one of all of the first grade classes NOT in a tie-dye shirt. He was placed off to the side, away from his class (which was in the middle of 5 classes, so not an ideal location for him) and next to his best friend. He stood when he was supposed to stand, sat when he was supposed to sit, and otherwise zoned out. No singing. No clapping. No smile. No enjoyment.


This is how I found him at one point.

I can't tell you how much this hurts my heart. I'm not sad because he's not like the other kids. I'm sad because to watch him in such discomfort and isolation never gets easier.

What IS better this year compared to last is that in the past I would let this grief consume me. I would try my best not to cry in front of everyone and paste on a smile that said, "yes, isn't this wonderful?!", while my heart was breaking. This time, though it took conscious effort, I was able to turn away from Evan and truly enjoy watching the other kids. My smile wasn't fake - I could watch all the cuties I know and feel warmth in my heart at their enthusiasm and happiness. And, then, I would turn back to Evan to make sure he was o.k. Was I sad? You bet. I left feeling emotionally drained in a way that should never be associated with a school concert, BUT there were no tears.

Progress.

Relentless forward progress.

And I almost forgot to mention that he made it through the whole concert. So, when that Mom I know congratulated Evan on his great job and gave him a high five, at which point my first reaction was to be uncomfortable with her praise, I was able to pause and look back at his performance and think she is right - he DID do a great job, just in his own way. I'm not sure that Mom will read this and recognize herself, but I am incredibly grateful that she talked to Evan, when my own response to him was mostly silence.

As I'm finishing this up, guess what Evan is wearing?

Lastly, strength to the other Moms out there that had tough days too; I'm forever grateful for your strength and our community of craziness.

Tuesday, May 31, 2016

Cup Shield

Evan has a new best friend; sometimes he calls it his brother. It's a cup from the movie theater with a picture of Captain America on it and it's name is Cup Shield. He made it a bed  on the floor of his room, used my foam roller as its pillow, and tucked it in. Yesterday he went to his room to spend "quality time" with it and then set it up with a story.

Unfortunately, Cup Shield read for too long and felt sick, so Evan tucked it in early for bed and turned his fan to blow on both himself and the cup.

Cute.

And, weird...right?

Evan has always attached himself to inanimate items not normally chosen as objects of affection. The attachment is usually short lived, but it is nice to see this caring side of him since we witness it so rarely.

Things like this always make me a little bit nervous, though, because he's got a big gray area regarding real versus pretend. There are many a time when we think he is pretending, but he isn't, and while I can tell you with 100% certainty that he understands that Cup Shield is, in fact, a cup, I can't guarantee that he fully understands that the cup didn't actually read a book. Sounds crazy, right? As an example, here is something that happened last Friday...
...Evan needed blood work done, and while waiting for  his blood draw, he started asking if he could take his blood so he could clone himself. I thought he was playing, but he became increasingly insistent on needing his blood. I explained that it is against the rules to take a vial of blood that was needed for testing, and - by the way - you can't really clone yourself. "I know how!", he exclaimed, and went on to explain how he would do it. (The idea for cloning comes from his Lego Jurassic Park video game, and for a while he wanted to hunt for mosquitoes that had dinosaur DNA so that he could grow his own dinosaur.) Eventually, Evan was distracted by his tests, but as soon as we entered the hallway after his blood draw, he crumpled into me and began crying for his blood. I had to pick him up and carry him to the car, where he went on to have a 10 minute tantrum, all the while screaming and crying for his blood so he could clone himself and get a brother. Seriously.

In case you are wondering, the way I deal with these situations is by rolling my eyes with great exaggeration when my back is to him, and if Jayme and I are together, you will often find us laughing or shaking our heads in a 'WTF' moment. Really, it's the only way to get through these moments with some sanity still intact. After I've had my moment of rebellion, I validate his feelings; in this case what I said was, "Buddy, I am sorry that you couldn't take your blood to clone yourself and I understand that you are mad". What else is there to say? In these moments, you simply cannot explain to him that he is being irrational and that the cloning technology he wants to use doesn't exist; it exists in his mind, and he does not yet possess the skills to discriminate the nuances of imagined reality versus reality itself. You know how little kids cover their eyes and think that you can't see them? It's called Theory of Mind...the ability to understand that others thoughts and actions (and reality) exist independently of your thoughts and actions. For most, theory of mind is gained independently during early childhood development; for kids with autism, those skills have to be explicitly taught.

So, back to Cup Shield...is this Evan's substitute because he couldn't clone himself? Perhaps. For now we'll just roll with it and shake our head in wonder when he shows that damn cup more caring then he has for anyone in our house. I'm past taking it personally and you know,  the cup has Captain America on it, so it IS pretty cool. For now we are happy in the knowledge that he has the ability to care so lovingly for something and look forward to the day when he can do that with actual people. Or, maybe he will be the scientist that can successfully clone humans from a blood sample and surround himself with, well...himself.
:)



Wednesday, May 18, 2016

Allergy Season


It's allergy season.
 
Allergies are no joke in our house...poor Evan is MISERABLE. Soon to be made worse because we've decided to have him formally tested so now he can't take any medicine (since you have to be off antihistamines for the accuracy of the skin test). Last year was Evan's first bad allergy season, which ultimately led to a bacterial infection in his eyes, so this year I had all the medicine lined up and ready to go, only none of it is helping.
 
I've cancelled all his therapy this week because he can't seem to handle anything beyond school, and even that is more of a battle than usual. I'm trying to tell him that his life can't stop because he has allergies, but when I really stop and think about how this must feel for him considering his Sensory Processing Disorder, it just makes me want to wrap him in a cocoon.
 
Pollen, pollen, go away....I want my regular kid back.


Thursday, May 12, 2016

Blueberry Meat

"Can I have some blueberry meat?"
                                                    - Evan, at 'way too early' this morning.

Anyone?

I knew exactly what he wanted: blueberry shredded wheat.

I am consistently amazed, and enlightened, and saddened by Evan's use of language. Daily, Jayme and I are modeling to him the correct pronunciation or uses of words and phrases...sometimes these stick and sometimes they don't. I cannot imagine what it must be like to go through life constantly misunderstood.

Earlier this week Evan randomly started telling me about a time (I don't know when) there was a problem in the Special Ed room with another student and he overheard the teachers talking about what to do. He said, "I tried to tell them but they said 'zip it, lock it, put it in your pocket' and I took their device so I could help them.". I asked several questions to try to figure out what this meant and at first I thought maybe he took the iPad so he could be busy while the teachers addressed the other child, but his concern just wasn't sitting right with me so I kept probing to get more information.

Finally, I had an 'AHA' moment. Now, let me write what Evan told me again, this time changing one word.

"I tried to tell them but they said 'zip it, lock it, put it in your pocket' and I took their advise so I could help them."

Makes much more sense, right? Sort of explains why he looked at me like I was crazy when I was asking about what games he was playing on the iPad. I think he was sharing this with me because he was frustrated that the teachers wouldn't let him talk, and he took their advise and stayed quiet, but he really wanted to speak to help them.

Here is another thing recently shared by Evan...sometimes he doesn't eat a lot in the morning, and when this happens he always asks me if he ate enough. (How the hell should I know?!) This stems from the fear that he isn't hungry because he is getting sick, which is the exception and not the norm. Well, one day after school he told me, "I told Mrs. XXX (his aide) that sometimes people don't eat a lot, but she didn't understand me, so I said sometimes people don't eat a lot, sometimes people don't eat a lot but she still didn't understand me". The repetition is intentional here; his aide didn't understand him so he repeated it the same way thinking it would help, but, of course, it didn't. I know, because I'm his mother, that he wasn't looking for confirmation from her that, in fact, some people don't eat a lot. Instead, he wanted to know if he was O.K. even though he didn't eat a lot. My heart just breaks when he tells me things like this because I know that he was worried for his health but no one understood that.

This one is a little funnier: one of his therapist's name is Ashley. One morning, he said, "there are two Ashley's and I'm so confused!". Silly me, I thought the confusion was because he has two therapists with A names, plus a babysitter with an A name, so I started to explain who everyone was. "No!", he yelled, "ASHLEY". AHA! "Buddy", I said, " you mean Ashley and ACTUALLY". This word confusion was all about his pronunciation, but boy...explaining what 'actually' means as a social convention is actually hard.

I could go on, and I'm sure I will in the future, but you get my point. I feel like I want to send Evan into the world with an Evan to English translation dictionary, and then attach myself as a translator. This will be his biggest limiting factor to independent socialization, and so for anyone who has wondered if I would ever "fix" his autism if I could - YES - his difficulty with language I would "fix" in a heartbeat...instead we'll mold it slowly with years and years of therapy. There is no spring season with this extracurricular activity, there is only year round (4 years now) of session after session after session. This kid work so hard. And, so herein lies one of my personal mantras: relentless forward progress. The fact that he can sometimes tell me that he doesn't understand, or is being misunderstood, was unfathomable a few years ago. Talk on, Buddy, talk on...

Friday, April 29, 2016

The Shoe Tying Song

Shoe tying is a right of passage for kids, one that is often frustratingly difficult to teach for parents. I knew early on that I wouldn't have the patience for this task, so I paid my nephew $5 to teach my oldest daughter (I had offered him $10, but he gave up so I only gave him half). I honestly can't tell you how she finished learning the process because I didn't teach her. I also have no recollection of how my middle one learned because, again, I called "not it".

Back 9 months ago, I discussed shoe tying with our BCBA because I knew that if I couldn't teach my girls, then there was no way I'd make any headway with Evan. Since then, he has been learning and practicing, and practicing, and practicing. If given enough time, and if he is in a good mood, he can now successfully tie his shoes (and has been doing so for at least 2 months). He cannot yet get his shoes on and prepare the tongue and laces, nor can he untie...those are the next steps of his instruction.

Bless those with the patience to teach these skills.

On to the rest of the story...
Last week in the car, Evan started singing a song. The words were clear and quick, and the tune was good. "Wow, Buddy", I said, "did you learn that in school?" (He can never repeat songs from school with all the words intact, so I was quite surprised and impressed by the song I heard.)

Shayna, who was with us, said, "No, he made it up".

"Sing it again", I asked.

He sung it again, exactly the same way. I was floored. He said he made it up to help himself tie his shoes. He explained that he had learned a song in school to help him remember something so he thought that if he made up a song about tying shoes then he would remember all the steps.

Seriously?

This is amazing to me on so many levels. First, that he is recognizing strategies to help himself learn. We've seen this in other ways, like when he is learning a new word he'll start repeating it to himself out loud, but this is the first time I've seen him take initiative to create a strategy. The fact that he knows he even needs strategies blows me away, and speaks volumes about smart this kid is. Second is that when given the appropriate strategy, he can speak (or sing) and remember at a rate that is commiserate with his peers (and, not to brag, but his memory for sounds is actually in the very superior range...something the school reading specialist states that she has never seen before). Proof to me that if he is given the appropriate education, this little guy can move mountains.

Before you listen to the video, keep in mind that in the car, just yesterday morning, he was trying to ask Shayna a question and the way he worded it was so messed up that neither she nor I could figure out what he was asking. It's hard to believe that the kid you will hear can struggle so immensely with communication that he will choose silence instead.

Oh, autism...you fascinating, fascinating creature...







Friday, April 22, 2016

Fun is Not Always Easy

 
I think it is really, really hard to understand the struggles of life with autism. I often blame school for Evan's daily struggles, and I do think they are partly to blame, but you know what? Just living is hard.
 
Evan has had a tough week. It's vacation, and we are often quick to blame the lack of structure for kids difficulties during break times, but I don't think that is really the full story with Evan. The picture for this blog was taken yesterday after he spent 2 hours in the afternoon on the floor - just laying there, saying nothing. If I hadn't of checked on him periodically, I wouldn't have even known he was there.
 
We must have had a tough morning, right? I'd argue that we did not. This is what we did: I took Evan for a haircut, then to the library for a cooking class (it was mostly demonstration but he stayed long enough to make his own chicken salad; he chose to leave about 3/4 of the way through), then we went to buy lunch, then finished at the playground where we stayed for no longer than 30 minutes (and I'm being generous). We were gone from the house for approx. 3 hours.
 
When we got home, he went to the bathroom and then immediately played his imagination. After that, he laid himself down. It became so painful for me to watch - this complete withdrawal from the world around him, which he does on occasion but has never done for this long - that I plopped down next to him. I didn't speak; I just put myself close enough for him to know I was there. He rolled over toward me and started playing with my hair, then holding my hands. Eventually, he wormed himself into the position in the picture where he got as much face contact as he could and started sniffing me (I've talked about this before in other blogs, where he seems to have this primal instinct to get as close to me as he can and take in my scent to soothe himself).
 
This is our vacation...pacing our way through life...a few hours of fun, followed by an afternoon and evening of recovery in the safety of our home. Some days I'm fine with it. Some days I long to be that family that can leave the house in the morning and not come home until bedtime; I get antsy to experience more from life, for both my kids and myself, but I'm stuck at home listening to Evan lose himself to the people in his imagination, whom he gets along with so much better than people in real life.
 
So, back to my point: living is hard. Just so you know.


Sunday, April 10, 2016

Autism Siblings


Just a little shout out to autism siblings on National Siblings Day. Late this morning, I went into the living room and found Evan on Shayna's lap. She told me that he had been there for 10 minutes; he wasn't talking, just moving his right hand up and down repetitively. He was mad because he couldn't watch the Green Lantern movie because it has too many bad words, and so she just sat there, quietly but supportively. She never asked for help, but just sat there patiently for as long as he needed. I don't think I even need to write how amazing that made me feel.




Thursday, April 7, 2016

A Simple Present in a 54 Pound Package

Today is my birthday and now I have to add a year to my favorite saying: I don't look a day over 43.

Evan refused to acknowledge my birthday this morning, but that was expected and not very bothersome. Ironically, he went on to give me the best gift I've gotten today and he doesn't even know it.

First, some background information...we've been working on Evan's compliance for well over a year, and more intensely since the fall. Essentially, we are giving him language to use if he doesn't want to do something so that he does not become angry. This is a slow and tedious process, one I think most days is heading backward rather than forward. The way we do this is quite simple: he is to ask for another minute if he doesn't want to comply with a task and we say, "sure", or "not right now" and then let him go back to his preferred activity the second he complies, or "not right now" and he has to comply completely. He uses this phrase all the time now, but we've still had difficulty with him following through on tasks like cleaning up after himself. Last night I seemed to have a bit of a breakthrough, though, and asked him twice to pick up trash off the floor that he put there and he instantly complied; I was beyond pleased.

Are you thinking your neurotypical child needs ABA too? Jayme and I have joked about this, so you are not alone.

This morning, Evan asked to play his imagination (his #1 favorite activity right now) before school. We only had 2 minutes before we left the house, so I told him he could but he wouldn't have much time. He said that was o.k. and started playing. Literally one minute later, I told him it was time to go and braced myself for chaos. He said, "can I have another minute?", just like I knew he would. I reluctantly replied, "not right now, Buddy, because we have to leave or Shayna will miss the bus".

He said, "o.k., no problem".

He stopped what he was doing.

He went to the car.

I've written this before, but it bears repeating, <insert fist bump here>.

Off we go to school and my day is looking good. Before I go on, you need more information about some of Evan's ABA programming...one of the things that we have been focusing on since the fall is social reciprocation. It is what it sounds like it is; Evan is being trained to identify key words in speech that cue him to reciprocate a conversation because left on his own, he won't respond. A thousand times now he's been asked, "what's your favorite xxxx?", to which he responds, "my favorite is xxxx, what is yours?". There are different variations of this that he is learning, and he is doing great with his therapists, but has yet to master it with anyone else. I know this program is simple in concept, but if you can stretch your mind and understand the social consequences for someone who never acceptably reciprocates conversations, you can see how important this skill is. Personally, Evan has spent most of his life not conversing with or answering me, so I've adapted to this over time, but our goal is, of course, for him to be able to make meaningful relationships outside of our house and to do so requires success of programs like this one.

So, Evan and I are waiting in the school drop off line and he starts talking about teachers. Out of curiosity, and for no other reason, I asked, "who is your very favorite teacher in the whole school?". He said, "Mr. XXX, what is yours?".

Close your eyes, and if you know me, just take a minute and picture my (a) shock, and (b) big smile.
Then, <insert another fist bump here>.

I actually hadn't asked looking for him to reciprocate, and I was floored when he did. This is the first time he has ever naturally reciprocated a conversation with me in this way, by asking my opinion on an on-topic fact. I don't even care that he used "what" instead of "who", or that he probably didn't care about my answer. His answer, by the way, was the man who fixes the computers.

It's the simple things in life...Happy Birthday to me :)

Thursday, March 31, 2016

Any Henri Matisse Experts?

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

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

Me: "What do you mean, Buddy?"

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

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

Me: "Did you say Henri Matisse?"

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

Me: "Did he paint the sea side?"

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

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

So today, I asked more about Matisse...

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

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

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

Me: "Did he like the sea side?"

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

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

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


Henri Matisse Fauvism Art

Monday, March 28, 2016

Why Is Good Special Ed So Hard to Find?


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

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

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

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

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

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

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

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

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

Saturday, March 19, 2016

It's a Constant Puzzle

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

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

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

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

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

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

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

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

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

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

Evan hasn't complained about feeling tortured since.


Wednesday, March 16, 2016

Lunch Time

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

Wednesday, March 2, 2016

Stereotypies

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

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

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

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

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

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

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

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

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

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