Looking Back

"Just when the caterpillar thought the world was over,it became a butterfly."

We are at the 6 month mark of Ryker's therapy with the school district. He has been getting occupational therapy and speech therapy--each once a week. We have spent the last few days looking back on those days where we thought we had lost our son. Adam described it so well today on the car ride home from Mankato after another evaluation. He told me that he is actually seeing glimpses of his son--not a child who is completely lost and oblivious to the world. 


Before we started therapy, Ryker was completely lost in his own world. He didn't look us in the eye. He never waved "bye bye" or clapped. He was non-verbal (and still is, but we are working on it!) and would get so frustrated that he would have a melt-down 3-4 times a day for over an hour each time. He would bang his head on the hardwood floors 50+ times a day. Family outings were (and continue to be) nearly impossible because noisy and crowded places make him uncomfortable, and any change in routine would cause a meltdown. He didn't know how to appropriately play with toys. His sister was non-existent to him (as were most people who came in contact with him). We were facing a reality that we never expected to face... all the while watching his twin sister learn the alphabet, count to 10, and use short sentences all before the age of 2. We couldn't have two kids who were more opposite of each other, and every day it brings a little bit of sadness to my heart. 


I knew something else was wrong; that Ryker had something more going on than just a developmental delay. At the twins 18 month check-up, the pediatrician shared my concern and that's when the "A" word [Autism] came into play. I knew we would be fighting a battle-- a battle for our sons life. He had slipped away from us, and the list of "He'll never's" was growing. I knew that I would be spending the rest of my life fighting for him and I went into this with guns blazing. I spent days on the phone getting him on waiting lists for different evaluation centers--most with a waiting list of at least 6 months and some upwards of a year. When you are dealing with something like autism, every day spent waiting for that diagnosis is precious time taken from the services needed. I researched every evaluation center thoroughly to ensure he would be in the best hands, and spent many late nights reading about therapy options that made my head spin. I slept little and the only thing that kept me going was Ryker. I would not and could not allow autism to win. I knew it was autism, I just needed to convince my husband and a professional to put it in writing. 


In December I decided to try the gluten-free/casein-free diet that is popular in the autism community. We didn't see much of a change with dairy, but going gluten-free improved his eye contact (still working on it, but it is better), sleep patterns, and eased some stomach issues. 


Fast forward to January 5th: we got the official diagnosis of classic autism. Although I knew it would be the outcome, it was devastating. It was like someone ripped my heart right out of my chest. I thought the world was over for him. For us. For our family. I spent endless days and nights trying to figure out "what else to do". I was drowning in paperwork from feeding clinics (he has problems with food textures), DAN! (Defeat Autism Now!) doctors, the children's hospital, and the additional therapy services I wanted him to receive. I took Ryker in for a follow-up visit with his primary doctor here in town, and discovered that he has some thyroid problems. What I didn't know was that he has HYPER-thyroidism, which is very rare in children. See, beyond the developmental aspects of autism there are so many underlying medical conditions that go undiagnosed. So, on top of facilitating his therapies and evaluations, I have to manage his medical care and the endless appointments he needs. Now do you see why I live and breath coffee? :)


Anyway, if you have gotten this far, hooray! Ryker has made great strides in the last 6 months of therapy--especially in his fine motor skills. He is looking at us more and paying more attention to the world around him. We still have a long journey ahead of us, but it is a blessing and a miracle that he has come this far. He is still non-verbal, but we are hopeful that with the extra speech therapy he will receive (starting next week), that we will hear a few words by the end of 2011. As of today, he will be receiving therapy 5 days a week, which will keep me extremely busy. I have had to put a lot of things on hold in order to do what is needed for Ryker, but if that means we will get our son back... I will do ANYTHING. 


This life is not easy. It is a challenge every.single.day. I have become a great multi-tasker, organizer, facilitator, and advocate. I do not take "no" for an answer when it comes to my son's services. I find a way to get what he needs and deserves. This fight for his life has changed me and I am just now noticing just how much it has changed me and my family. I have an amazing and supportive husband who picks me up when I fall apart. Makaylin is amazing and has such a thirst for knowledge and I only hope that one day she can teach her brother everything she knows! And of course, Ryker. He has taught me more in his young life than I could have ever imagined. He is so smart and I know that some day he will show the world exactly what he can do. I will never underestimate him and the power of early intervention. 


The quote at the beginning of this post (if you can remember it!) is exactly how I feel about our journey at this point in time. I thought the world was over. ended. Our hopes and dreams of what our son would do were crushed. We were given a list of "never's" and had to grieve and face our reality. Now I can say that we are hopeful. He may not do all of the things we hoped he would do, like play on a sports team, but if he can say "I love you" or "Mama"... that is good enough for us.