Gone are the days of the quick Facebook post where in 25 words or less you knew what was happening in my world, now we have been asked to Blog! I am sure in the long run this will be good and probably a bit therapeutic, but finding the time to detail out the struggles and joys of the day on the screen has been a daunting task. But, enough. Her I am world! I am thinking it best to start with an introduction.
I think the pervasive theme through out this past year was "fear." Fear has been the catalyst for all the therapy, speech, occupational, PLAY and it was also a huge motivator in starting this group with Lindsay. Really, what is boils down to is that no one, and I mean no one, for surely knows exactly what Hudson's life will look like in the future. They can guess, but no one knows for sure. Prognosis is good for a child diagnosed just before is 3 rd birthday. But not knowing, that in it's self is scary. So, I started on this quest. I think Jennie Lindhorst of the documentary "Autistic-Like" put it so well, "I felt like every interaction I had with him was in an attempt to save his life" - and I still feel that way. After diagnosis, I was in shock. I read every thing that I could get my hands on (and could read in the 5 minutes before I fell asleep). I doubted, "is he Autistic?"and I questioned, mostly because as a mother, you blame yourself. This was, "all my fault," I thought. Maybe, I harmed him by not taking my prenatal vitamins?? But, not for long. You can only stay in that place for a short while because you are loosing precious moments to make a difference, and the pity party goes nowhere, so I sprang into action.
I was already talking to Lindsay in those exhausted moments in the school lobby, before and after his therapy preschool class. We both thought a support group would really help us not only network and find special activities for our kids and their siblings, but just get information that was credible! There is so much information out there about autism and add/adhd, sensory processing ( and we have already established my reading time frame). Then in Feb/Mar I was asked to attend a local autism conference where my occupational therapist was presenting. This was eye-opening! During that day, I attended an hour presentation called "the ABC's of Autism." The classroom was filled with people just like me - starved for the right kind of information and dealing with intense emotion about being newly diagnosed, or not even diagnosed yet. I went up to the presenter and told her what I was looking for - a room full of people who I could talk to, who I could laugh with, cry with, and share experience, strength and hope. Let, me back track a bit and tell you I am a child of two alcoholic parents, both of who got sober with the support of Alcoholics Anonymous. I am used to this model - whereby, you are only as sick as your secrets, and the hope comes from hearing other peoples stories. Lindsay and I both were dying to hear some hope. The woman running the "ABC's" said, "you know, that is what I wanted, when my son was diagnosed. They don't have anything like that here. Why don't you start one?" I thought, "your kidding me right? This is the astounding wisdom I am getting from this woman? I can't start one! - who am I? I certainly am no expert!" As the months past, Lindsay and I still wanted that phantom meeting out there, that never appeared. The more we did talk with people the more we realized we just needed to do it. With these kids, no one is an expert! They change constantly! I am forever being shocked at the amazing things Hudson can do that I never thought he would conquer and surprised by the simple things he still struggles with. I do hope to see you in our meetings here in Salt Lake or to hear from you out there that are dying for some support and hope like I am. Love, Jen Levy
(Whew! I did it. My first blog.)
To provide a place for parents and family members to meet and share experience, strength, give hope and awareness, to other families who have similar experiences raising children with ADD/ADHD, SPD, Anxiety, ASD, mental health diagnosis, developmental and behavioral challenges. Through sharing in this experience of raising these hard to raise kids, we grow stronger and more resilient.