My Tyler can be….well…..LOUD. This is especially true when he is in a more happy and manic cycle of his behavior. Along with being loud, he will be repetitive with his speech. He can push out this forced speech with such volume and abrupt force that it will literally make people become startled. To him, he is just displaying joy and his goofy sense of humor.
Not everyone is going to “get it”. There will always be people that believe Tyler (and those similar to him) should be locked away in a corner room like its 30 years ago. Others will believe that learning to be tolerant is for snowflakes and the PC crowd. Still others just cannot wrap their head around disabilities and are fearful of what they do not know. Personally, I do not condemn anyone who feels this way. Rather, if they are open to learning I am happy to tell our story. So often people will ask me if I would take offense to them asking me a question about Tyler. I tell them absolutely not, I would be more offended if you made an assumption about him without asking!
My hope is to always give Tyler experiences in the typical world so that he can learn and feel included.
And I have seen him, over and over again, bring out the best in people. Tyler continues to change people’s lives every day, which I believe makes them more tolerant and accepting in their own world.
That being said, I DO believe that I have a responsibility to other people while I am in public with Tyler. If we are going out to eat, I will choose a restaurant that has an atmosphere which is relaxed and informal. I would also choose a time that would not be crowded, and look for a table that affords us some extra space. If Tyler became too loud or began to act out, I would take him outside either temporarily or permanently depending on the circumstances. I am a tireless advocate for Tyler’s right to enjoy a typical experience, but it should not genuinely impede on someone else’s right to do so as well.
In our 25 years together I have seen people react with amazing kindness. I remember an elderly couple coming up to us in a restaurant and handing me money for Tyler to reward him for being well behaved. I’ve seen people run to hold a door for us. Or just those small acts of grace like saying hello to him or giving him a high five. I’ve also seen people cut in front of Tyler as someone held the door for him. Or a father and son who mimicked Tyler in a restaurant when an aide took him to lunch.
The question is, how do we process this? How do we react in either instance?
The difficult part is when someone shows a lack of kindness and tolerance toward Tyler. If it is out of ignorance or fear, I turn the other cheek whenever I can, especially if that person does not appear to want to be educated. If there is outright disrespect, I will use whatever non-physical means necessary to defend him and remove him from the situation.
I am a strong believer in acknowledging kindness. After all, small acts of kindness are wonderful gifts. When anyone who works with Tyler does something kind for him, I send an e-mail to their boss. When a stranger shows Tyler tolerance and acceptance, we personally show them thanks.
Navigating the typical world is hard for those with special needs and their families. We have to be open to those who want to be curious, or to show us some act of compassion.
We must encourage others to not be intimidated by someone that is exceptional. The more we display that behavior within ourselves, the more others will embrace us. And the more others embrace us, the more wonderful things will happen.
My Walk With Tyler is about my journey with my son, Tyler, and is intended to provide a voice to caregivers, especially those with disabled children. To be fair, I am not a therapist, or an expert on special needs, nor would I intend to pretend to be. My goal is to share all of the triumphs and heartbreaks that we have been through, especially during this transition into Tyler’s residential placement. Because there is no “manual” for caregivers to follow, we must help each other find the way. My hope is that through my advice, stories, and experiences that the reader can find nuggets to add to their own journey. To read more from Tom click here!