In addition to learning about a very worthwhile resource for many I came away from the workshop with some new realizations. The community guides really focus on finding meaningful activities for each person. They had many methods in seeking out what an individual finds interesting.
From this, I realized that many may not know what their child or family member with disabilities finds interesting. I found this very sad. Some families just left this to the schools to do and seemed to have little interaction with their child or have any idea of what their child would like to do. Some families, had vague ideas of interests but needed help in making these activities happen to be successful and meaningful experiences for their children. This seemed to be the largest group represented.
Community guides are great for what they can do but there are limitations which I discovered in the conversations. The people who they work with are people that will be able to get from point A to point B independently or for people who are quite high functioning. Their services are geared toward finding opportunities but they are not for finding support people to assist in the activities. I realized this during some conversations regarding issue with our son.
My son has a wealth of interests and we are NEVER lacking to find activities that he would be interested in. What we do lack is personal support to be with him in all activities that he may want to do. Our son has no interest or capabilities of doing anything with his hands (art), no attention span for games, very poor fine motor skills for anything that he may want to do so needs assistance with all fine motor skills. He DOES have an insatiable interest in talking. Not necessarily conversational talking but stream of consciousness, almost manic talking, not able to focus on any one thing for more than a few seconds. Our son will never be able to take a city bus without someone with him nor will he ever be able to walk outside his campus without someone with him. His social skills and awareness for danger are scary.
Many disability advocates do not understand the intense needs of people like our son. One can not tell by seeing our son out with us the extremely high support needs he requires to be safe. Someone is ALWAYS with him to help him maintain his orientation and safety. Our son does not look as complexly disabled as some people who need wheelchairs or who are obviously more physically impaired but his support needs are extremely high.
Even with his needs as high as they are – he is fully able to participate in community activities. It just takes more work, preparation, understanding and people but it is doable with the right supports. Below is an example of one very worthwhile experience for him and the reasons it worked are because he had the right support person (THIS IS THE KEY TO SUCCESS) and the right cooking school and teacher who was open to his special needs.
Thomas has always wanted to be chef since he could talk. He often refers to “when I’m a chef” meaning when he’s grown up. His definition of a chef is anyone being around food so he very well could be a chef and we fully support his dreams of becoming a chef.
There is a local cooking school and I saw their class list. There was a pasta making class and I thought Thomas would just love it. I went and spoke to the owner and she was very receptive to the idea and had worked with kids with disabilities before. Thomas was also blessed to have the most wonderful middle school teacher of all time (Gretchen). Gretchen was the first person who had ever offered to take Thomas out – someone who loved him and wanted to spend time with him, taking him to places that he just loved to visit. Gretchen was a lifesaver for not only Thomas but for us too. Gretchen agreed to take Thomas to the pasta making class. We knew it would not be easy – it was 3 hours long – but it would be a great experience.
Gretchen knew Thomas really well – she knew when the talking was going on too long, she knew when he needed to go outside and walk around while the rest of the class was doing things he either had no interest in or would be too disruptive. They would come back and pick up where they left off. Everything went as planned and Thomas and Gretchen enjoyed the class and made a great dinner!
To this day, (5 years later) Thomas says “there’s my cooking school” every time we drive by. This was a very successful experience but was only made so by having the right support person.
Our support people are the people who can make or break opportunities for our kids. We need to honor our support people.
Thank you, Gretchen!