This past weekend we enjoyed our local small town festival. The sunflower festival had our town overflowing with visitors, food, music, entertainment, sunshine and knackzot for the weekend. Normally the streets of Altona are pretty much traffic-ridden free however on weekends like this we all search for parking, watch for cars as we walk and practice our patience as what normally takes “five minutes” to drive somewhere takes more like seven minutes. Small town problems.
Growing up in Altona we, as most parents, were excited to have our children enjoy the festivities as we did when we were young. A big part of the festival is the Saturday morning parade. Emily, our eldest typical learning daughter, like most children enjoyed the parade while catching and eating the candy and other treats being tossed into the crowds.
When Hannah was born with all her health and development difficulties we tried with all our might to immerse her in typical life. Exposing her to as much as we could while adopting the philosophy “know her limits and push her just above”. While her autism was only diagnosed late at age six we knew there were significant development irregularities that were not understandable to us however we chose to assume that she could do anything we put our minds to.
While regular everyday activities like responding to her name, walking in public, playing in a way that was not weird, and talking were alien to her we never assumed we were in for big problems as we approached the Saturday morning sunflower festival parade. We happily and naively brought Hannah to the parades expecting her (I kept forgetting that nothing was easy for this girl) to enjoy the parade. After all, kids. like. parades. Not so. Hannah would immediately show signs of being terrorized, with her face becoming red, her whole body sweating. She would clamor out of her stroller and while she could not appropriately converse with us knew the phrase to save herself. “Time to go home time to go home time to go home”. Crying, freaking out, and definitely not loving the parade we were perplexed at this unusual reaction. Eventually we gave in, knowing that the limits were pushed high enough. Letting her sit in the vehicle she would be safe from the noises and the sensory overload. It hurt to not only not have my daughter enjoy an outing with us but to see her so terribly afraid. People trying to be helpful would say unhelpful things to us like “I don’t really like parades either”. Fun fact …. don’t. Experiencing this odd reaction and knowing that it was not understandable to anyone made me feel even more isolated.
But every year we tried. Every year she was able to stay sitting with us and not in the vehicle a little longer. Eventually as the years went on we were able to only verbally warn her when the firetrucks, ambulance and other loud vehicles were coming and merely suggest she “cover her ears”. Eventually we took her to the parade without a single thought on her reaction. I beamed with pride as I saw her sit and watch a parade.
This summer Hannah’s head coach of the Special Olympics informed us that there was to be a Special O float and that all athletes were invited to be on the float. Immediately I said “Hannah will be there!” When I told Hannah about this opportunity she shook her head and said “I’m not gonna do it”. Inside I laughed asking myself “Has she even met me?”
Hannah stuck with her opinion of “not going to do it” until the night before when I told her who would all be on the float – one of them being a long lasting crush. Suddenly the parade sounded good and she was excited! Thank goodness for Eli.
Being old and tired when I brought her to the float the years of parade hell were lost on me as I felt I was just dropping her off. The fact that we had worked really, really hard on this fell to the ground and it felt like I was just doing a task.
We watched the parade this year without Hannah. Not because she was in the vehicle terrorized but because she was participating in the parade. When the Special O float came by we cheered and waved! Hannah covered her face with her hair as her Special O friends on either side of her encouraged her to look and wave at us. It was a beautiful few fleeting moments.
Once again I am reminded to continue pushing Hannah just as we all need to be pushed in different avenues of our life. Sometimes in the special needs world there can be a ‘reverse discrimination’ meaning that because somebody has a disability that we don’t ask anything of them. We are so glad that while it was difficult, that we persevered for her and that we helped her achieve this win!