My Thoughts on My Birthday…

It took me a fair amount of time to come into what it was I wanted to do with my life. I know each person kind of comes up with their own timeline and figures this out in their own time but I think I took a bit longer than most. I just turned 37. I turned 37 today actually.  It wasn’t until I had my own children and went through the process of getting their autism diagnosis. It was terrifying and you literally have no idea where to turn to get help and the services you need. Starting this program I wanted to just understand the education my children are getting and how I can be more proactive at home to make my sons educators job that much easier. I wanted to provide them with every opportunity I possibly could. This included educating myself now that I knew what their needs were.

The further I got into the program the more thought about our future, mine and the Boys. Where would we go next and how would this degree take us there? I know I want to get my Master’s Degree but what then? I have had an idea brewing for some time and today it was solidified. I made a new friend recently who has a young son with Autism and no idea where to start. It made me think back to my own struggles at the beginning. I was lucky enough to be in therapy at the time and when I was sobbing to my therapist about how ineffectual and lost I felt for my sons she pointed me to some agencies like OPWDD to help get my foot in the door. Then I was very blessed to get an amazing Medicaid Service Coordinator, Broker, and Financial Coordinator that have made my decision for self-directed services (where I handle paperwork, staffing, therapies, etc.) as opposed to going through an agency an easy choice to make.

I was blessed to have had these people in my corner and to be able to be in a position in my life where I could make school and my sons future my entire job…at least for now in this crucial time. I have been blessed with being able to select a team to work with me from everyone from my Msc to My Respite worker who gives me 4 blissful kid free hours every Sunday, someone I have known for years and trust implicitly. This is also another blessing. It is not always this way for most and to be honest there was a time when it wasn’t for me. I was lost, confused, and grieving.

So as I was making calls and helping my new friend along the path, giving her the benefit of my experience and knowledge, my own path became a bit clearer. I want to be of help to other parents during this time frame. There are so few supports once you get your diagnosis.. It’s very much well what do I do now? I want to be that person to help slide them into the next phase so they can do as much good for their children as possible, and give them their best chance.. their best future.


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