“A Time When My Emotions Got In The Way”

writer's note:

*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 9^th 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.

Now that time has gone by I am able to see how good this was for her, and glad that I pushed through my emotions that evening. In fact, 4 short years later when she graduated from high school, a genuine smile was on my face the night of the ceremony.  I am thankful for these and so many more memories of her 18 years in school; all of them, the ones where I was rude, and the ones where I was truly happy. I can see now that our children are not the only ones growing and learning during their school years.