Having a son with special needs can be challenging, heart-wrenching, bittersweet, and sometimes just downright difficult. Yet, most of the time I’d have to say it is no different than having a “normal” son. Although I have never had a “normal” son, my daughter does not have special needs so based on my experience with her, Zeb is “normal” in most senses of the word.
Probably one of the most difficult aspects of having a son with Down Syndrome is watching how other people react to him. Supposedly our society is now being conditioned to be “tolerant.” What is that, really? Well, from my experience I can tell you that tolerance when it comes to Zeb means ignoring or avoiding him. When this isn’t the case, he endures staring, pointing, laughing, or worst of all that “pity” look with a little shake of the head.
I also just love it when I get that “look” from people as if they “understand.” They understand nothing. Unless they have had a child with a handicap, and even then every one of our experiences are different, they have no idea what life is like for a person with a disability, let alone the family that takes care of them.
Zeb though is very lucky. He does well for himself. Although we do not believe he will ever be able to live on his own completely, he can go out to movies by himself and nearly every Saturday night I drop him off at Barnes & Noble where he sits in the cafe for about two hours listening to his iPod, drinking pop, and enjoying some independence away from mom and dad. Many young adults his age with special needs will never be able to do even these seemingly simple independent acts.
When I drop Zeb off at the bookstore, he goes in by himself, finds a table, and gets himself settled. I do not go in with him or even check on him until I pick him up a few hours later. He has a phone that he can call me on if he has any trouble, but (knock on wood) for the past several years he has not had occasion to do so.
For the most part there have never been any problems leaving him by himself. Once or twice when I picked him up he was quiet and withdrawn. When I talked to him about it I found out that either people at another table were staring at him making him uncomfortable or teenagers had made rude comments to him. I comforted him and explained that some people are just mean or rude and tell him to do his best to ignore them.
What else can I do? The world is not going to change and I cannot expect it to. I have done my best not to force my son on the world, but at the same time I don’t think it is fair that I keep him locked away. He has a right to experience as much of life as he can, regardless if people accept him or not.
Fear is a terrible thing. It hinders a persons ability to think, reason, and understand. There is nothing worse than walking through a store with Zeb next to me and watching as a mother grips the shoulders of her child and pulls them far out of our path, as if their child might catch “it.” Thankfully Zeb doesn’t understand their actions or pretty much even notice. A case where ignorance is definitely bliss.
There are occasions, wonderful occasions though when a person will come up to Zeb and strike up a conversation or stop him to comment on how nice he looks. This absolutely makes Zeb’s day/night and he floats on Cloud 9 for hours and remembers these experiences for days. He refers to the people that take the time to acknowledge his existence as his buddies or even friends.
At Barnes & Noble there are several “regulars” that Zeb sees week after week and some of them have taken to stopping by his table, shaking his hand, asking him how he is, and engaging in conversation with him for a few minutes. They are sure to say goodbye to him when I pick him up and smile and tell me to have a good night. No pity, no fear, no tolerance, no difference. These experiences touch me and prove that there is understanding and acceptance out there.
Saturday night when I went in to Barnes & Noble to pick Zeb up, I noticed that his tie had been tied incorrectly. Hubby ties it for him, but ties it while it is hanging on a door knob. The back portion of the tie was hanging about 4” past the front portion of the tie. I looked at him and said, “I’m sorry Buddy, I didn’t notice that Daddy hadn’t tied your tie right.”
He just shook his head and began putting his iPod away. I went on and told him that I’d fix it for him, but I didn’t know how to tie a tie, but I would go on YouTube next week and figure it out so this wouldn’t happen again.
Zeb smiled and told me, “That’s okay.”
As I stood waiting for Zeb to put on his suit coat a young man at the table behind us asked, “Would you like me to fix that for you?”
Surprised we both turned and looked at the young man. Zeb is quite shy when it comes to most strangers, but with men he is more comfortable than women. He looked at his tie and then shook his head yes. Overtaken by emotion I nearly choked when I said, “This is so nice of you.”
The man was in his early 20’s, from the books and papers on his table I assumed a college student, and by himself. He stood up and accepted the tie that Zeb had removed from his neck and handed to him. The young man put the tie on his neck, over his t-shirt, and began tying it. It took him two tries to get the lengths of the tie right (this tie is very difficult to judge because it is a thicker tie) then carefully loosened it from his neck, pulled it over his head, and helped Zeb fix it back around his neck.
This random act of kindness that young man performed for Zeb means more to him than anyone could possibly understand. The first thing he did when we got home was to run in the house and show Hubby how his tie looked. Hubby looked at it and said, “That’s not how I tied it.” Hubby had tied a Windsor knot and the young man hadn’t.
I explained to Hubby what had happened. Hubby told Zeb to take the tie off and offered to retie it. Zeb grabbed onto the tie and held it close to his chest defensively and flatly said, “No.” To Zeb, that tie will never need to be retied. He will leave it tied as the young man tied it because it meant that much to him.
What that man did for Zeb goes much deeper than just tying a tie – he treated him with kindness, with compassion, with respect, things that Zeb never takes for granted. This made Zeb’s night, and probably his whole week. For me this act will be something I remember always because for one moment Zeb wasn’t ignored, pitied or feared, he was accepted for who he is and seen as a person – not as someone with Down Syndrome, and for this I am forever – Simply Grateful.