The following is a personal story written by Amanda, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the journey that her family has been on since autism entered their lives almost three years ago. If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the accomplishments!
I am a stay-at-home Mom, a wife, a lover of everything that sparkles and shines, a bit of a fashionista, somewhat of a diva, an exercise addict (it keeps me sane), and a bit OCD about the cleanliness of my house. I am also the biggest advocate for my son’s needs, his biggest cheerleader and believer! But more importantly I am Mommy to two wonderful boys, who by the way, have too much energy!
Joey (ASD) is five-years-old now and just entered kindergarten/learning disabled classroom. He is an amazing little boy who has a very tenacious attitude towards work. He lights up a room when he enters it and over the years has touched many hearts. He is my love, he is my life and we are somewhat co-dependent on one another. Joey was diagnosed with autism at the age of two, and we have not stopped working hard since then. He has been through so much. I hope and pray one day he will be able to tell me that all that I am trying to do for him was worth it.
The Journey Begins
After Joey was diagnosed with autism I threw myself in head first trying to figure out how and what I needed to do to help my child. At the same time Pete (Joey’s little brother) was a newborn, and difficult to say the least. My husband had just started a new job, and I was at home almost all day, every day balancing therapies, researching therapies, and trying to do my best to help Joey; and just be Mom to both my boys who were both still babies (Joey was two-years-old and Pete was a newborn). As hard as I tried to keep it together, this time of my life was one of the darker times filled with feelings of hopelessness, sadness and depression; at the time, there seemed to be no end in sight.
Six months after Joey was diagnosed I began to lose my hair. Now to know me, I was one of those girls with Breck girl hair! It was my thing. It made me feel beautiful. I’m not a confident person, have always struggled with self esteem, and when I began to lose my hair I thought, How am I going to make it through this time?
I went to doctor after doctor, and was initially diagnosed with alopecia related to the stress and the doctors were hopeful it would grow back. Two months after I began to lose my hair I was completely bald and was diagnosed with alopecia universalis. My whole physical identity had been stripped from me. I lost my eyebrows, eyelashes, and every other ounce of body hair. Nothing remained. I was a blank canvas and completely and utterly lost but I continued on…
For Joey, for both my boys. They needed me and they loved me unconditionally.
It has been two and half years since I lost all my hair, (I wear wigs) and realize that the strength, hope, belief and love I thought I was giving Joey he was actually giving to me. This journey that Joey and I have traveled, thus far, has been an emotional roller coaster and by the grace of god I have found hope again through my son.
We have seen huge gains with Joey, and most recently (this past summer) his language skills have begun to emerge. This has been a very exciting and rewarding time for me. Because after all the tears and hard work, we are finally seeing progress and I’m hearing his little voice! This past summer for the first time I heard “I uv u”! I do believe that moment will forever be etched in my mind, and on the bad days I will go back to that moment.
Pete is just as precious as Joey and sure knows how to push buttons. He just entered preschool and loves it. He so desperately wants Joey to be his buddy, and hopefully someday they will form a brotherly bond. Pete shows me not to take things for granted, just as Joey does, and to celebrate all milestones…little or big. My husband and I believe Pete was brought to us to help his big brother.
Autism came into my family’s lives almost three years ago and I will not lie, it rocked my family to its core. This journey has had high’s so high that the emotion is virtually unexplainable, and we have had lows so low I’m not sure I can get through another day. I’m not sure why autism knocked on my door; maybe it thought I was the Mom for the job? I’m proving to myself everyday that I am strong enough to take what is thrown my way and my Joey, well, he proves to me everyday that miracles do happen. If you believe and hope and hold on to the positivity there is nothing a child cannot accomplish.