Tuesday, July 7, 2015

Autism and Middle School: Surviving and Thriving by Cristy James

We just signed my son up for classes at the high school next year, and as we
look forward to this new phase in his life, I reflect back on his years in the middle school.
There were many trials and tribulations, but he has also matured and gained new skills
and for that I am grateful. I decided to write this article to share with others some of
the things that did and did not work well during these years – years that are difficult for
ALL kids. It is by no means a definitive listing of all you will need for middle school, but
my hope is that it may give you some insight into what you can try with your own child.
For background information, my son has high-functioning autism and struggles with
anxiety and depression. He attends school in the general education classroom, with
the support of an aide available in the room. One of our main goals for these years
was to foster as much independence as possible. I will use the term “we” to refer to
my son and the host of people who helped support him, including family at home,
school staff, and outside therapists.

The first obvious area that we needed to focus on was organization. Being left
“on your own” to navigate multiple classrooms, teachers, assignments and a locker
were all challenges for my son. We had to be sure to list out not only his schedule, but
also what he would need to bring with him to each class. We planned when would
be a good time to go to his locker and even when to take a bathroom break. We
found that in order for assignments to get home for homework, we needed a single,
accordion-style folder that went to every class, along with whatever else the teacher
required. We also made sure we had access to his textbooks at home. Another skill
we worked on (and are still perfecting!) is his ability to plan ahead for larger tasks. This
included not only preparing and studying for upcoming tests, but also breaking larger
projects down into manageable tasks and scheduling them. For example with a book
report, the steps might be reading the book, making notes, organizing your topic, and
then writing the actual report.

We found that one of our best tools in supporting our son was the use of
technology. Unfortunately, we had to work hard to let the school allow it’s use, but his
iPad has proven invaluable these last 2 years. It is a central tool that is always with him,
and it not only serves as an organizer, but it also helps with note taking, writing papers
and several specific academic tasks. We even use alarms/reminders on it to prompt
him to do things (like actually turning in that homework we struggled through!) that
typically an aide would have to do. These days there are many apps that can prove
useful, and I recommend you “try before you buy”. First identify the skill deficit, and
then look for an app that will focus on that area. We found therapists and some
disability support websites to be good sources of potentially useful apps. We also
found that there’s a certain “coolness factor” for our son using the iPad, which was a
bonus since he struggles with social relations. I will note, however, that this is still an
emotional teenager using this fairly expensive device. So make sure you pay the extra
money for the replacement plan. Just saying…we learned this lesson the hard way.

Another key point that we found is that communication is even more important
than ever. It’s actually harder to do, but still important and well worth the effort. You
really need to keep the communication lines open between school and home, plus
you also need to work on how your child communicates with you and advocates for
himself at school. Gone are the days of only one teacher who sends relevant
information home in a weekly newsletter! I have learned to start the school year with
an introductory email to all his new teachers. The letter is brief, but includes some of
the top strengths of and difficulties for my son. It also encourages communication in
the future. This sets the stage for a good relationship, and (hopefully!) allows you to
catch things before they become a problem. Our school also allows us, as parents, to
access our son’s grades online. Staying on top of this helped us find where he was
having difficulties, and allowed us to address them with the school. Lastly, I use the
term self-advocacy to refer to when my son needed to speak up for himself. This was
typically when he didn’t understand what was needed for an assignment or what was
expected of him behaviorally. I found this a particularly difficult area to let him take
some ownership of, and even to let him experience some failures. I now realize that
he really needs to develop these skills to succeed in the future. But I found that if I
could keep him talking to me about what he was having troubles with, I could still help
him think through ideas on how to advocate for himself and get what he needed.

I don’t want to leave out the subject of puberty. It’s a very real and difficult
factor that complicates everything you’re working on. I don’t have any magic
solutions but I suggest you take the time to VERY EXPLICITLY teach your child skills
related to puberty. Personal hygiene and body changes are all things that you need
to not only take the time to teach them about, but you also need to find motivators for
them to follow through on. If you child is already struggling with social difficulties, then
unpleasant odors and/or greasy hair are not going to help them out! You also need to
spend time teaching them some basics of sex ed. They WILL hear lots of new terms
and ideas, and you need to help them understand what is appropriate! We even
found it necessary to teach our son many of the slang words that were related to
sexuality, so that he would understand and be able to process what he heard other
kids saying. And not repeat them…loudly…while getting off the bus!

Why haven’t I mentioned academics? We found that, for the most part, we
needed the same supports in place as previous years – but that nothing new really
came up. There were only 2 minor things we ran into. We didn’t realize how the
choices of what classes he takes in middle school affects what classes he is allowed to
take in high school. So he’s entering high school already behind in some subject areas.
The other thing we realized is that the school was providing no aide or extra support for
our son in the non-core courses, such as music and shop classes. This meant a lot of
extra communication with those teachers and trying to find creative ways to support
him without adding more burdens to the already over-loaded teachers.

I’ve saved the big one for last: social difficulties. These are years where there is
so much going on socially and my son didn’t understand a lot of it! I’ll start off with
the hardest part – bullying. It happens much more often than we know. The kids are
much more smart and more subtle about how and when they choose to “tease” your
child. We had to develop a very specific plan for him to deal with what kids were
saying to him. We found that planning out and practicing responses for him to say in
certain situations and identifying trusted adults were key factors in helping him cope
with what was going on. But he still struggled and his self-esteem and depression
worsened – one of the most painful things to watch as a parent! We really relied on
our therapists to help him with his skills and to provide a listening/supportive ear for him.
We also found it helpful to identify reliable, positive peers that he could associate with.
Having someone to sit with for lunch was important. Finding activities that he enjoyed
and was fairly proficient at was also important. For our son, singing in the choir and
joining a small club related to remote-controlled cars were opportunities to not only
gain some self-esteem but to experience some positive social relationships. My son
has a friend now, for the first time in his life – someone to share his experiences with
and to teach him much more effectively than I can. You have no idea how happy I
am about that! And finally, regulation of his emotions, something he struggles with
anyway, was even more of a challenge during these tumultuous years. Hormones and
pressures and frustrations were ever-present and could turn out into a big meltdown
with what seemed like little warning. The fact that he can function fairly well often
eludes people into thinking that he understands things or is “doing okay.” I suggest
you look for as many ways as possible to alleviate anxiety and stressors. But you also
need to look for appropriate ways to “blow off steam.” We found that regular
exercise actually helped, as well as having a trusted counselor to talk with. He still
attends private therapy to work on his social skills, for which we have added many
new skills to work on these last few years! And, again, motivation that makes sense to
him is often needed to reinforce his using of those skills.

I hope that you have found these insights useful. I know that every child and
their situation is different, but I’m hoping that even if you didn’t find specific answers to
your problems, you could at least feel better knowing that we all struggle through
these years with our children. There’s something to be said for “kindred spirits” – we
can laugh and cry together! What does the future hold for us? I don’t know – the new,
large high school that is looming ahead of us seems a bit scary. But we feel that some
of the things we have been struggling with will “get better” with the availability of new
resources there. No matter what, I’m very proud of all that he has accomplished and
we will continue to work to support my son and give him the best life that we can!

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