Hello world. I hope that everyone is in good health and feeling encouraged as our world begins to reopen. I encourage everyone to continue practicing social distancing as well as proper hand hygiene. On today’s blog I wanted to start on a topic that sparked a conversation I had with one of my girlfriends. She’s a trained therapist as well as a case manager. She has worked for child protective services and is currently the manager of a crisis center for children. I was expressing to her my frustration I feel when I speak with parents that have children that have been newly diagnosed with autism. My frustration stems from the fact that there is no tool kit, standard of practice, or checklist that parents can use as they maneuver through the complicated unknown world of autism. Don’t get me wrong, there are many resources available on the internet including at segcenter.org. But, a lot of that information is vague and not specific to your child. Starting from pediatricians to other healthcare workers there’s no real guidance for parents especially early on in the diagnosis.
What I was most concerned with
My biggest frustration is because there is no “book of instructions”, parents can use or know what real questions to ask. As we continued speaking, I was amazed to hear from a trained case manager, who has been practicing for over 10 years, the lack of communication and division amongst healthcare workers practicing in mental health. In her experiences she has found that information that could be beneficial to the patient tends not to be shared amongst healthcare providers. So pediatricians are not aware of information that case management has and case managers are not aware of information that therapists have and so on and so forth. My question is how does this impact our children in the long run? In our upcoming blogs I want to share with everyone what I wish I knew back then when Jayson and I started this journey. How could I have better advocated for my child with the information I know now? I hope you will join me as we continue on this complicated world of autism. I just want to encourage everyone to continue sharing their stories and sharing what they wish they knew back then now so others won’t have to go through the rough times we did. Knowledge is power my friends!