[WARNING – THIS IS AN UNUSUALLY LONG POST, AND SOMETHING OF A TEAR-JERKER. CONSIDER YOURSELF WARNED!]
On Friday – the last day of school – Matthew took his “8th grade walk”. It’s a tradition that we first learned about when Peter did his at Stafford Middle School three years ago. When Trent Middle School opened, and Matthew was sent there instead of Stafford, I was afraid the traditions would be different, but this one, at least, remained the same.
So, what is 8th grade walk? It’s sort of like a mini-graduation from Middle School. At the end of the last day of school, the 6th and 7th grade students line the hallways. The staff gathers in the foyer, just inside the doors. Then the 8th graders take a final walk through the halls, to the cheers of the students. Next, they pass the staff, giving them high-five’s and fist bumps and hugs. Finally, they step outside the school, to the cheers of the parents waiting for them.
It is a very emotional event, watching your 14-year-old step outside of the school he will no longer attend and know he is now officially a High School Freshman. But with Matthew, it was a whole different kind of emotional. It’s why, as I write this, the tears are gathering in my eyes all over again. Because Matthew has been through some really tough stuff, and yesterday, he reminded us all that he’s a survivor. He’s tougher than his autism and tougher than the challenges he faces every. single. day. of. his. life.
I remember the fear I had that something was very wrong with Matthew as a toddler. He didn’t speak much, preferring to let his big brother speak for him. He didn’t respond to crib and room time outs like his brother and other children his age. He got angry for reasons I couldn’t understand, and his anger grew to rage when I tried to stop his screaming and hitting and biting. He reacted to swats on his hand or bottom like he had been beaten but without ever showing remorse – just anger. He had to be kept home when he started biting the other kids in the nursery at church. He refused to potty train, and thus created a lot of stress for me and the poor women who worked at his Mother’s Day Out program when he was three and four years old. In fact, we changed to a different MDO every year, thanks to the bridges he burned.
When he was four/five, there was an older teacher who “got” Matthew. She loved him and observed him and figured out that loud noises upset him. She sat with him on the bench by the playground every day during recess, which he loved. He fell in love with her, and he trusted her, so he obeyed her, for the most part. I learned a lot from that woman, and began to work on earning Matthew’s trust at home. Our relationship improved so much, it was staggering. He melted into my arms when I told him “Matthew, I can see that you’re upset. Do you want to come sit and tell me about what’s wrong?”
And so it was with great optimism that I sent Matthew to Kindergarten at Boals Elementary, where Peter was already in 3rd grade. I got my first call from the school that day, though it would hardly be my last. Matthew had stepped on the playground for his very first recess, saw a kid looking at him in what he perceived was a threatening way, and punched him in the face.
So much for all the optimism.
Things went downhill from there. Matthew refused to sit in the circle during circle time. He colored on all the teacher’s pretty boxes and hit, pinched and bit other kids. He was sent almost daily to sit against the wall in the classroom next door. He was miserable. His teachers were miserable. And I was sick with worry. We took him to play therapy that year, but it didn’t help at all, since there was no way to recreate the stress of the school environment and one-on-one, Matthew was fine.
In 1st grade, things actually got worse – something I didn’t think was possible. They put Matthew with the toughest teacher in the school (she’s now the PE coach) in the hopes that he would fall in line with the discipline she instilled in her class. Instead, he was sent to the principal’s office almost daily, which meant I was getting phone calls from the school. All. The. Time.
When Matthew got in trouble in class, he would have to sit at a lone desk in the Assistant Principal’s office and do his work without speaking to anyone. And he loved it. He was bored, but at least it was quiet and he could work at his own pace. Mrs. Beran – then the AP and later the Principal at Boals – learned that Matthew was brilliant, completing his work in record time and then drawing until he had to return to the classroom. She also had a lot of conversations with him about his behavior, and came to love him, despite the headache he caused her.
When Mrs. Beran told me Matthew’s behavior had to change, or we would be looking at alternative school, I was terrified, but Matthew was more so. He seemed to really regret his behavior but just couldn’t hold it together in that environment. We tried everything, working with the school and the therapist, but in the end, it was Mrs. Beran submitting Matthew to the Student Success Team that changed our lives. The SST is made up of a few select teachers and administrators, as well as the school psychologist. Their job is to review problematic students and work together to figure out a solution to whatever challenges the student seems to be facing.
They met during the Fall semester and began observing Matthew and interviewing his teachers. A few days into Winter Break, I got a phone call from the school psychologist. I had never even met her before. She called me from Virginia, where she was spending the break with her parents. Her first words, after introducing herself to me, will be forever seared on my heart. She said, “Have you ever heard of Asperger’s Syndrome? I’m almost 99% sure Matthew has it.” We talked for a while, then she told me that the district autism team would be called in to do a full evaluation of Matthew, to see if he qualified for services. Those services would include Matthew being admitted to special education and assigned a full-time case manager, who would work with us and his teachers to create an individualized education plan for Matthew.
After hanging up with her and telling Brad the news, I started researching Asperger’s Syndrome. Back then, it was its own diagnosis but in 2013, it was put under the umbrella of autism. Here is what I learned:
Asperger’s Syndrome – now usually referred to as “High-Functioning Autism” or just “Autism” – is “a developmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior and interests.” (https://en.wikipedia.org/wiki/Asperger_syndrome).
“The following behaviors are often associated with Asperger syndrome. However, they are seldom all present in any one individual and vary widely in degree:
• limited or inappropriate social interactions
• “robotic” or repetitive speech
• challenges with nonverbal communication (gestures, facial expression, etc.) coupled with average to above average verbal skills
• tendency to discuss self rather than others
• inability to understand social/emotional issues or nonliteral phrases
• lack of eye contact or reciprocal conversation
• obsession with specific, often unusual, topics
• one-sided conversations
• awkward movements and/or mannerisms” (https://www.autismspeaks.org/what-autism/asperger-syndrome).
Along with autism comes a variety of sensory issued. Matthew is sensitive to loud noises (thus the fire alarm going off at his pre-school was terribly upsetting to him). He is extremely sensitive to touch, and I always tell him he’s like a cat – willing to rub up against you if he’s in the mood but hates being touched when he doesn’t initiate it. He gets headaches from bright lights and is tired a lot of the time – probably from having to manage all the stimuli. And he is more bothered by smells than any of us and frequently has to deal with a bloody nose, possibly from thin membranes inside his nostrils. All of this adds up to a lot of frustration in school, where everything stinks and everyone is noisy and often forced to be in close proximity to one another, and the lights are bright all the time. He’s also perpetually cold in school, which is why he is well-known for his heavy coat with a hood, worn every single day we allow it WITH A HOODIE UNDER IT – even if it’s 100 degrees outside. He actually told me once he considered his coat his “armor”.
So, yeah, the diagnosis fit Matthew to a “T”. I will never forget how stunned I felt after coming to terms with Matthew’s diagnosis. Shame, guilt, grief and sadness were all part of the emotional rollercoaster I was on after talking to the psychologist on the phone that day. But there was another emotion – hope. I felt hopeful for the first time in years.
And so, within a month, he was officially diagnosed and put into special education, where he was able to receive training and help. We saw our pediatrician about medication, and he began taking Intuniv, a medicine that helps with impulse control. And with the help of some truly wonderful teachers and staff, Matthew improved. Using a system of rewards and consequences and things like sticker and point sheets, Matthew learned how to ask for help when he got upset, and the staff learned how to anticipate what would set him off. He was given a desk apart from everybody else, with blinders that made it feel quiet and separated. He was allowed to nap in the resource room, in a tent they brought in just for him, with a white noise machine in it and a sleeping bag.
Best of all? I stopped getting daily calls from the school. In fact, his 4th grade teacher loved him so much, he moved to 5th grade with Matthew, so he could teach him for another year.
But all good things came to an end when Matthew graduated from Elementary School and moved to Trent Middle School. Because Matthew’s class “opened” Trent, there was a lot of chaos and transition that was still going on when he started 6th grade. We didn’t even have a representative from the Middle School at Matthew’s ARD in 5th grade, which meant we were flying blind when it came to setting up his accommodations for Middle School. There was no one to prepare us for the huge transition ahead, and no one to help Matthew make the huge leap to Middle School.
We saw a huge regression in him that year. He went back to hitting kids and getting in trouble constantly. And I was pulling my hair out over the lack of support he was getting from his extremely incompetent case worker. The woman had not even read his paperwork when the school year started and admitted after the first few incidents that she was unfamiliar with the accommodations he was supposed to be receiving!
The incident that pushed me over the edge happened after Matthew had consistently struggled with working in groups. He has never been a real “team player” (see definition of autism, above), and having to figure out the give and take of a group was beyond him. Add to that the chaos and lack of structure during “group time”, and we was a ticking bomb, waiting to go off. So despite the kids being told not to sit at his desk or mess with his stuff, one day close to Christmas break, Matthew walked back to his desk and there was a boy seated in his chair. The teacher had stepped out of the room, so there was no one to help when Matthew asked the boy to move and he refused, telling Matthew he needed to grow up (or something like that). Matthew responded by yanking the chair out from under the boy, causing him to fall to the floor.
Matthew’s case manager called me and was very upset with Matthew. She admitted that she threatened Matthew, telling him that if the boy had hit his head and cracked his skull, his family could sue our family and take every penny we had.
(Because yeah, that’s what a 12-year-old autistic boy needs – more stress. Thanks to her, we had to add another med to his arsenal: Zoloft, an anti-anxiety med.)
After that, I had enough. I requested a meeting with Vicki Baughman, head of the special ed department at Trent. And the minute we started talking, I knew she was the one who could fix everything for Matthew. And she did. She told me she was taking over as Matthew’s case manager, effective immediately. Vicki began to make the changes Matthew needed to help him learn how to manage his emotions, to learn impulse control, and most of all, to mature as an individual. He was never required to do group work again, but chose to from time to time. He was given the freedom to leave any environment he was in at school if he started to feel himself “escalate” or get angry, and walk to the resource room, where the special ed teachers all worked. If Vicki wasn’t there, one of the other teachers would help him cool off and work through his emotions. And thanks to Vicki, he was able to do an alternative PE in 7th grade. Also thanks to her, Matthew took a social skills training class in 7th & 8th grade, and despite him saying he never learned anything from that class, I have begun to think Matthew has the best manners of anyone in our family. When he meets someone new, he sticks out his hand, makes eye contact, and introduces himself. Yes, it’s a script, and yes, he seems stiff and somewhat awkward, but people respond to that better than the kids that don’t bother to speak or introduce themselves.
His Social Skills teacher, Mr. Black, also began having weekly game days, where Matthew and a few other kids stayed after school to play board games with him. Matthew LOVED these times, and learned a lot about how to interact with others even while remaining competitive. He’s now a part of a group of boys that meets at a friend’s house in our neighborhood to play DnD – Dungeons and Dragons. And before you judge the game too harshly, know that 1) I have looked into it extensively and haven’t found anything demonic about it and 2) It’s a board game in an era of digital gaming. It’s one of the only things Matthew enjoys doing that doesn’t involve a screen!
By the beginning of 8th grade, Matthew quit needing breaks from class almost completely. Vicki had him run the meeting she usually has with his teachers prior to the start of a new school year, and they were able to ask him questions about what works best for him. He was nervous, but it made a huge difference in his relationship with his teachers. When the Texas Education Agency (TEA) sent out a team to each region, to interview parents and kids with special needs in order to create a new plan to present to the U.S. Department of Education, to prove we are in compliance with the I(ndividuals) with D(isabilities) E(ducation) A(ct) of 2004, Vicki selected Matthew to go as a Middle School representative, though most of the students were older than him. He answered questions and gave opinions about what the state could do to better serve students with special needs.
So to sum it up, Matthew has gone from being suspended from school for a day in 1st grade, with talk of alternative school, to being a student representative from our region to the state. He went through his entire 8th grade year without. a. single. incident. Let me repeat that: not one time last year did he get into an altercation with another student. But it’s so much more than that. Matthew has developed a sensitivity to other people’s emotions. He has become an expert in reading people’s body language. And he has learned how to recognize his needs and ask for help meeting them.
This boy – this young man – is taking on marching band next year. Not only that, he’s going to learn how to play a new instrument – the mellophone – for marching season. He is spending a week at summer camp for the fourth year in a row – the only one of our kids to go to camp this year. He is one of the bravest people I know, and he is an inspiration to me. I can’t believe how much he has changed, and I can’t wait to see how God is going to use him in the years to come.
So I will leave you with this video from yesterday, of Matthew leaving Middle School and officially becoming a High School Freshman. (Watch the door for Matthew as the students file out, and you can see him bow to the crowd.)