*This is a rewrite of a blog post from 2010. I submitted it as an article to TheMighty.com but they declined to use it at this time. Hey, it happens! I decided to post it here, perhaps you will find it of interest or at least informative.*
Sometimes a parent’s emotions
get the better of them, and they may act rudely. The parents of those with
special needs generally have a high level of stress and emotion already, and
when a special occasion comes along it can sometimes be too much. As the mother
of a young adult diagnosed with Aicardi syndrome, a condition which includes
substantial developmental delays, intractable seizures, visual deficits, and
scoliosis, I have found myself frequently doing things I don’t feel like doing.
Over the past 25 years of my daughter’s life I have regularly internalized
those feelings and put on the happy face of a mother doing her best for the
good of her child. When I reflect on her
school years, I see times when nobody would have guessed that I didn’t want to
be there. Concerts, scouts, parties, and other activities I accompanied my
daughter to were not always where I wished to be. Of all those times, there were a few that all
I could manage was to show up with her, absent the positive attitude. There is one incident that immediately comes
to mind because it was an important milestone for her; middle school
graduation. Generally, I try to be as
gracious as possible, but when I’m feeling especially stressed and emotional I struggle
with being civil.
After spending 3 years in
early intervention, and 6 years in a self-contained therapy based school, we
decided that she would attend our town’s schools for the remainder of her school
years. She spent the next 9 years in our
brand new middle school, and the final 4 in our local high school. Her graduation from that middle school was an
occasion I had little enthusiasm for. You can’t tell now by looking at the
pictures, but I’m afraid that my manners took the night off.
In her last year at the
middle school, we had been assured repeatedly by her school case manager that
my daughter would be able to stay in that school until she turned 21 and aged out
of the educational system. Things
changed and near the end of the 9th year, due to the class size
becoming too small, they decided they wanted to include her in the program at
the high school for her last four years. Moving on to the high school was a
relatively last minute decision, and 6 weeks’ notice was not enough time for me
to adequately deal with the thoughts and emotions caused by this development. I
was concerned about how well the larger school would be able to meet her needs,
if the teachers would work with her appropriately, how many opportunities for
inclusion were available, and if the 1:1 paraprofessional who had been with her
for a number of years would go with her. I was
not looking forward to attending the graduation ceremony, being unprepared in
every way for how I was feeling. I could
have told the school that my daughter wasn’t going to participate in the
ceremony, but I try to remember that her life experiences should not be planned
by what is easiest for me. I have always just wanted to give her as typical a life
as possible within her range of ability, and graduation is part of that.
Although I would have felt better staying home, I could not deny her participation.
It was a lot more work for me to get her ready at a time of day when all I
wanted to do was curl up on the couch with a book and a blanket. As she is
sensitive to being touched, she was unhappy about all the preparations we had
to do at home to get ready for the special evening. We put flowers in her hair,
took pictures, and gave her gifts. During the evening she seemed excited as she
looked all around during the processional, smiled at the applause and sat with
her peers in front of all the parents. At the time, I failed to enjoy it.
Sensing my reluctance to allow her participation, I was assured by the school administration
that we would have a parking spot reserved for our wheelchair van, as well as 3
seats right up front for my husband, my older daughter, and me in case she
suffered a seizure during the ceremony or we needed to exit with her quickly,
and she would be reassured by being able to see us there. When we arrived, the
parking spot was taken by someone else, it was difficult navigating with her
wheelchair through the crowd, and one of our chairs was missing. I’m afraid
that even at this early stage of the evening my graciousness and patience were low,
and I spoke rudely to the man taking the tickets. This man was kind enough to
ignore my poor attitude when I complained about the missing seat, and asked
someone to get us another chair. I managed to get through the ceremony, but the
natural excitement of other parents irritated me. In retrospect, I see that
part of what I was feeling was fear of the future and a heightened sense of how
differently she experienced life as compared to her peers. By the end of the
evening I was cursing just above what would be considered under my breath, and
barely managing not to shove people out of my way in order to exit the building
to meet up with my daughter and her attendant. Once outside, I couldn’t wait to
get home, get my graduate into bed and then relax.
