The Best Advice I've Been Given...

Earlier this week Riley’s other mother and I met for coffee with a mom who is at the beginning of their family’s adventures with autism. We talked about advocating for our child, challenges and strengths of our child and family.

I wanted to write something about our meeting because it brought back so many memories of the early years in Riley World. And then I found this half-written post in my drafts folder. How fortuitous.  ;)  I forgot to mention this piece of advice so hopefully I did not scare her off and she will be back here to read this.

If there is one piece of advice I would give to new families starting out it would be something our pediatrician first said to me “You need to do what is right for YOUR family”. Those words helped us get through the maze of “what to do/what not to do” questions in those early years.

Back in the 1990’s, ABA was THE autism intervention. All I remembered hearing were the horror stories of families losing their homes and getting into debt trying to access this therapy.  O…M…G!!!!!   

If G and I did not agree on a therapy 100%; we looked for something else. Whatever we tried we not only had to be comfortable with it but it had to feel right.  In our gut.  Otherwise…we knew it would not work. Yes Riley would struggle at times but if it ever came to a point of distress for him and the rest of us…we would look in another direction.

There is life beyond autism. Life can not be all about autism. There needs to be a balance.

It was wonderful to hear this new mom talk about wanting to “just be ‘normal’” sometimes whether that meant going out to a restaurant to eat a meal as a family or going out on a date night with her husband. So if you are reading this “mom”…good on you! You seem to already be looking for that balance. I loved how you went to get your child his McD’s Happy Meal to take and eat in the restaurant with you and your husband. Not sure I would’ve thought to do that in the early years. And you did it with respect and dignity for both your child and the restaurant staff.

From my own personal experiences, there will be times when it will be hard not to become cynical or jaded. What is important, in my opinion, is to try not to stay in that place. 

That or......get yourself a cave like I have.   ;)