When you have a child, there comes a time when you must recognize that your child has grown into an autonomous individual, capable of making decisions for themself. The same is also true when you have a child with a developmental disability.   

In our case, for many years, we were the ones making the decisions for Philip. But there came a point where we had to take a step back. As Philip has aged, I have begun to see that he is very capable of making his own decisions. Consequently, we have begun to take a different approach, instead of assuming what he wants, we involve him in the decision-making process.   

For example, towards the end of last March, Philip had enough funding left to go on a small vacation. I asked him where he wanted to go, and he said, ‘Las Vegas.’ I questioned his destination choice and he explained that he wanted to see a live show called Battle Bots. I wondered how he knew about the live show given that his reading ability is limited. I was surprised but it made me realize that when you think he’s not listening, in fact he is. Philip perceives and takes in the world around him far more than we realize. It made me understand the importance of taking a step back and considering what he would like and giving him the autonomy to have choices and to make his own decisions.  

However, sometimes it can be difficult to implement all his ideas. For example, Philip likes shirts with animated characters on them. If you or I were to wear it, others would equate it to an interest in the character. But for Philip, it supports the idea that he hasn't quite grown up yet. This is an area where we are still trying to make progress. We try to guide his choices to be more age appropriate when possible. As an example, instead of wearing character t-shirts, we encourage him to look at alternatives such as buying socks with the same characters as they are a more subtle option.   

When we are out in the community, I usually let Philip speak for himself, without interrupting. If there is a need, then I will sometimes step into the conversation. Usually though, people realize quickly that Philip is the one leading the conversation. There are times that it takes a little bit longer, but I find that most people who interact with him are quite kind and patient.   

We recently made the decision that Philip could have his own debit card. He has expressed to us how proud he is of this; sometimes he will even offer to pay for dinner! Allowing him to have some control of his finances was a big step for us, but we trusted that he was able to take this on. Now, he's tasked with remembering his PIN whenever he must make a purchase. There are times when we do have to be careful as Philip would pay for everything and anything, simply because it is fun to tap the card.    

When he is with his support worker, Philip has a spending limit of $5.00. If he plans to spend more, we ask that his support worker call me first. I tend to be the person who reasons with him to help him understand that some of his purchases are too expensive or not something he needs. Saying “no” to Philip can result in frustration on his end, but it can also become a learning opportunity for him. At times I will suggest to him to write it on his Birthday or Christmas list. Lots of negotiation is involved in this process.   

If Philip had access to all his money, he would purchase food, toys, clothes, etc. He does not really understand the concept of money and saving just yet. This is something that we are currently struggling with. But this is similar for his sister who at times needs to be reminded about spending and saving in order to pay her bills.  

Philip and I often compile a written list and point out the pros and cons, then compare the two to see what the best plan of action could be. It’s interesting because I’ve used this method with my daughter and now that she’s an adult, she uses that same method in her independent decision-making.  

Two years ago, we moved into a bungalow and downstairs there’s a separate apartment for Philip. It’s amazing to witness how capable he is of cleaning his own space, cooking and so on. Sometimes I think ‘Oh my goodness, I didn’t know he could do that…’ But it makes me reflect about how when I was younger, and my mother cleaned around the home or cooked, I just copied her, she didn’t necessarily teach us how to do those things. I see Philip able to fulfill these responsibilities as he is very capable.  

What is hard for parents is learning to let go. For example, Philip knows how to cut the grass using the lawn mower and does a great job, but we haven’t let him use the trimmer. This summer I let him use the trimmer for a small area of the garden because his dad, according to Philip, hadn’t done it the way he thought it should be done. I let him know that he could use the trimmer with supervision this time but for safety reasons he could not use it regularly. Well, the next day, I found him with the trimmer, and I questioned him. Then I wondered why I was restricting him, and I thought, maybe he can do this. As a result, we have decided to let Philip start using the trimmer. In retrospect, I realized we restrict our kids because of our own fears and at some point, we have to let go or else we are just placing limits on an otherwise capable young adult.  

Hearing the stories of other families has helped me realize my son's capacity and capability to make decisions for himself. When I heard or read about becoming my son’s guardian, and I understood that his rights would be taken away, that didn’t sit well with me. Throughout this life, we’ll all make our own decisions with the help of family and friends if need be. For example, if you’re thinking of buying a new car, you’d consult with a friend that you know has got knowledge about the brand you’re considering. You’ll gather the necessary information needed to make an informed decision.   

Philip is very smart and more capable than we sometimes think that he is, so it’s so important for him to be central to the decisions made in his life. So much autonomy is taken away from people when they don’t have choice or decision-making freedom.