Just Matthew

So I've started watching the TV show Parenthood. I was told by several people that I should watch it when it first started because there is a kid named Max in the show who has Aspergers. I tried an episode or two back then, but it was too painful and hit too close to home. But now that we have some of our worst years behind us (I hope), I feel ready to watch it and am enjoying it thoroughly. However, it has caused a lot of stuff to surface that I thought I had forgotten. These are just a few of the thoughts that watching Parenthood has brought to mind.

dcp_1717Matthew was named for my two grandfathers: Charles Augustus Beever and Barney Mathiews. Although he was pensive, he was a pretty easy baby. He was sweet and seemed to adore his older brother. He loved to snuggle, and very early on, became attached to his blanky, which he held while sucking his thumb. Things first started to change about the time he turned two, but got really bad when he turned three. He became extremely difficult to handle. No amount of consequences would phase him. We tried time-outs but he enjoyed being alone and just made up stories in his head. We tried spanking him, but he seemed to just firm up his resolve. We tried taking toys away – he was obsessed with Thomas the Tank Engine and owned more trains, tracks, and train videos than I care to admit. But when he was deprived of his trains, he became violent, even kicking me in the shins and hitting me. It was shocking to me that someone so small could become so angry so quickly.

I mentioned his behavior problems, specifically his anger, when I visited the pediatrician each year, and he regularly suggested that Matthew's temper wasn't appropriate for a child his age. However, I believed I was the the cause of it all, and that bad parenting was to blame. I was also absolutely convinced that there was no such thing as ADHD or Aspergers or any other of the myriad of childhood problems people were discussing. I believed firmly that these were just discipline issues – again, bad parenting – and that it was a simply a cultural phenomenon that would pass away in a year or two. And yes, I am well aware of the irony as I write that here.

DSCN0595And so we walked down a path that grew darker and darker. I began to wonder where we had gone wrong with Matthew. He was impossible to figure out. He would grow angry over things that didn’t make sense to me and at the same time that he was being so violent, he also seemed to be reaching out to us for help. I sensed that he didn’t want to be the way he was being, but couldn’t explain himself to us. And when he wasn't angry, he was very compliant and very sweet. He loved to snuggle, he loved his mommy and daddy and big brother, and he was happy playing all by himself for long periods of time.

We added Samuel to the mix when Matthew was not quite two years old. And while Samuel was a ray of sunshine in our darkening world, he just served to show us even more clearly that Matthew was different. Matthew didn’t react the same way Peter and Samuel did. Matthew didn’t engage us the same way, and it didn’t help that he hardly spoke a word, even while other kids were chatting happily with their families. In fact, his lack of words was a cause of concern for my pediatrician – and another sign that something was wrong – but again, I assumed it was just because Peter did all the talking for both of them.

Samuel was a challenge for Matthew. As he grew bigger and demanded more of my attention, he annoyed Matthew more and more. He messed up Matthew's carefully arranged trains (yes, they had to be in a particular order and arranged just so), and from Matthew's perspective, he really added nothing good to our family. It wasn't until very recently that we began to see a softening toward Samuel and now (I'm so grateful to say), they are great friends. But in those early years, I had to be extremely vigilant to protect Samuel from his big brother, especially when Matthew grew angry.

Our first indications that we had a real problem on our hands came from the church nursery, where Matthew's anger turned toward other children. He started biting, and biting is the one thing that a church – or any childcare – cannot tolerate, because it really does put other children in harm's way. We tried to teach him not to bite, but we also started keeping him out of the nursery as much as possible for the safety of the other children. I finally tackled potty training with Matthew when he was three. After going through it with Peter, who practically trained himself, I very nearly gave up and just let Matthew wear diapers his whole life. He didn't care a bit about potty training, no matter what I tried to entice him with. One particularly memorable day occurred when Brad was out of town. Somehow, the baby gate we put across the door to Samuel's room got wedged between the door and his dresser, and I couldn't get into his room. At the exact same time, Matthew pooped on the carpet (he was on the potty, but in my desperation to get Samuel's door open, I missed him running off) and if memory serves, Peter was sick with a stomach bug. I had so many days where everything seemed to fall apart at the same time, I honestly can't remember it all. But while I was finally able to use something that I ran under the door to move the gate and no one was hurt in all of that, it was one of those moments when, as a mother of three very young children, I sat down on the floor and just cried and cried.

When Matthew was four, and finally potty trained (for the most part – he continued to have accidents for years after), we enrolled him in a Mother's Day Out program two days a week. He struggled from the very beginning and was very nearly expelled the day they did a fire drill and without anyone noticing, he ran back into the building and was found playing in the room next door to his with some toys he had been eying for a while. He put that poor teacher through a lot. Meanwhile, Samuel was in a baby class down the hall where the teacher absolutely doted on him. She even threatened to take him home with her, she loved him so much. Peter was in a First Grade and already had been identified as a Gifted & Talented student. Everyone loved our kids – at least, the other two. Matthew was a completely different story. Matthew was a hard kid to love – even if you were his parent.

When Matthew was five, I enrolled him in a different preschool – one that met three days a week – and kept Samuel home with me. His year at that preschool was a really good year for him. He had a teacher – Ms. Cindy – who could see immediately that there was something different about Matthew. She did things for him that made such a difference – like warned him when the fire alarm was going to sound for a fire drill, and even put her hands over his ears. She would sit with him on the playground when she could see him starting to lose control, and help him calm down. She told me that he needed a teacher who could understand him and his needs, and I saw living proof that year that she was right – the teacher made all the difference with Matthew.

The following year, Matthew started Kindergarten at the same elementary school where Peter was now in 3rd grade. Peter was a doll, and never had a teacher who didn't immediately fall in love with him. Matthew's Kindergarten teacher was a really, really good teacher, but she had a large class to deal with and couldn't always attend to the needs of one child. Also, Kindergarten was real school, and they expected Matthew to fall in line with the routine, but Matthew has always marched to the beat of a different drummer. And so he started acting out. He pushed kids down on the playground during recess and hurt kids during PE – regularly. He wouldn't stay in line because he never just walked – he has always walked on his toes, and in school, he generally was pretending to be someone else, so he did ninja moves down the hallway or something like that. He got mad at his teacher frequently, and was uncooperative, so she would send him next door to sit by himself while a different teacher worked with her class. That suited him just fine, as he really didn't want to be in school anyway, and sitting alone he was free to make up stories in his mind.

From the very first day Matthew was in Kindergarten, we got regular calls from his teacher or some member of the school administration – usually the assistant principal, because when he was really bad, he got sent to work in her office. At one point in first grade, she even suspended him for a day, to see if that got his attention. But he loved being home so much, he begged me to just homeschool him. And believe me – I considered it!!! But something inside me knew that if Matthew could not learn how to be a part of a classroom, he might never be a part of mainstream society. And so we pressed on.

And then one day in first grade, after some pretty terrible weeks at school, the assistant principal said she was going to call a meeting of the student success team, to discuss Matthew with them. I had never heard of such a thing, but it consisted of the school psychologist (who I never even knew existed prior to this), some teacher and a few counselors from surrounding schools in the district, plus our school administrators. Her reason for doing this was that she told me she was convinced Matthew wasn't a typical “bad” kid, who got in trouble on purpose. She said she could see so much potential in him – but he just couldn't seem to control himself.

That was just before school let out for Christmas break. And it was during that break from school that the school psychologist called me to ask if I had ever heard of Aspergers. Yes, I had heard of it, but no, I wasn't very familiar with it. She asked if anyone had ever mentioned it in relation to Matthew, and I said that no, that had never even been suggested to us. She went on to tell me she was 99% sure Matthew had Aspergers, and that she was qualified to diagnose him herself but she wanted the district's autism team to evaluate him.

We were shocked. Nothing like this had ever entered our minds. We were so busy blaming each other, ourselves, and the school, that we missed the obvious – Matthew wasn't a typical child at all. He was a child with special needs.

I recently had an opportunity to speak with the Assistant Principal – now Principal – who took Matthew's case to that team. I told her how her choice not to write him off changed the course of his life and ours. I tried to express to her what she has meant to us all these years, but words just never seem to do justice to our level of gratitude. She might never know, this side of Heaven, what she meant to a mother who was diagnosed with clinical depression because she blamed herself for all of Matthew's shortcoming. But I tried to tell her, and I'm saying it here – she very nearly saved my life.


Warning: Rant Ahead

Notice how he has organized the dominoes so that the numbers are matched end to end.

There should be a law to prevent angry blogging, kind of like texting and driving. Of course, I’m so mad right now, I wouldn’t pay any attention to it.

Why am I so mad? I’ll give you a hint. It starts with an “M” and ends with an “atthew”.

For those of you who don’t know, Matthew, our 8 year old, has Aspergers Syndrome. Long story short, this is a very high-functioning form of Autism that appears most often in boys, and in our case, results in a child with an extremely high intellectual IQ and an extremely low social IQ. At the time of his testing last year, he was socially on the same level as a 2 year old.

One of the “symptoms”, if you will, of Aspergers is what’s called perseveration. Basically, it’s the inability to let go of something that’s in your mind. The way they explained it to me was that it’s like there’s a track that they go around and around on until the trench is so deep, they can’t get out by themselves.

So here’s what we went through last night and this morning.

I have a rule that everyone makes their lunches for school the night before. In order to eat supper, they must have a list of things completed, and this is one of them. And lest you feel sorry for them, they have HOURS to get about 3 things done, yet they manage to put it off until supper is on the table.

Yesterday, Matthew started making his lunch and discovered that Peter had taken “his” sandwich – actually half a sandwich – and put it in his lunch.

And so began the epic Tale of Two Sandwiches.

I’ll spare you the incredibly boring details, but in the end, because the sandwich in question had mayo instead of Ranch Dressing, it was ruled to be Peter’s (Matthew only eats Ranch on his).

At first, I stood firm on the “make your lunch rule” but finally, I just got sick of arguing with Matthew (if that wasn’t his sandwich, he wanted to figure out who took his and make sure they got consequences!) and told him to eat his supper and if he didn’t have a lunch in the morning, he would just have to buy. With his own money, since he only gets to buy once and he always saves it for pizza Friday.

This morning, after I had totally forgotten about the whole epic sandwich debate of 2012, I learned what happens when a child with Aspergers goes to sleep perseverating. He wakes up even more entrenched in his beliefs.

I tried everything. Offered over and over to help him make a new sandwich, help him make his lunch, told him he could buy today instead of Friday, reminded him he could buy out of his own money.  I tried distracting him (sometimes that helps him move out of his “trench”), I tried leaving him alone, ignoring him, debating with him.

I did everything short of solve his problem, which is what he was holding out for.

In the end, he was screaming, holding his ears, yelling that his head hurt and it was all my fault. On and on, until I was in the car, about to leave him at home. He threw the sandwich I made him and a cheese stick into his lunch box and caught us right before we pulled out of the garage.

Then he proceeded to get in the car and yell at us to be quiet and leave him alone.  Needless to say, he has lost all screen time for the foreseeable future.

We were late to school today, which means even though they were probably only 5 minutes after the bell, they will all 3 be counted absent for the purposes of the State. I’ve already gotten one truancy warning letter – this will probably mean a second warning.

And all because of a stupid sandwich.

When I got home, I called our FISD parent trainer who is assigned to our family and told her what happened. She has been coaching me through a lot of issues like this since the diagnosis last year. Her advice? Do whatever you have to do in the morning – in this case, it would have been to say “You didn’t get your lunch made so now you will have to buy today” – but follow it up with “we will discuss this further after school”. Then after school, tell him he owes me for the lunch. Write down what happened and what the consequences are, then just hand it to him after school. She also said to make sure next time I have a plan in place before the kids wake up. In other words, don’t just hope the issue goes away.

I saw one of Matthew’s Special Ed teachers outside the school this morning. I think he might have been trying to coax another child out of a car. I told him the situation (I usually text one of them so they have a head’s up of what they will be facing that day) and he just smiled and said “Sounds like we’re going to need a lot of Jolly Ranchers today”.

Jolly Ranchers are fine for Matthew. I’m personally hitting the hard stuff myself. Of course, you know I mean Starbucks, right?

Thank you for giving me 5 minutes of your life that you can never get back.

Rant over.