Autism not only affects the person who is diagnosed, it affects the entire family. Our family is just one of millions of other families affected by this complex disorder. Lucas, our first-born son was diagnosed at 19 months of age with Autism. However our story begins much earlier than this. His first year of life was pretty typical, or so we thought. He was our first-born; we had no other children to compare him to. Lucas was meeting all his developmental milestones on time. Sleeping through the night, cooing, smiling, rolling over, crawling, and walking all happened when they should. At his 1-year well visit the nurse went through the usual checklist of milestones. Then she asked does he have 3-5 words? Does he bring you books or toys to play with him? Does he point? I could not say yes to one of them. She said, “don’t worry, he will develop those skills very soon. He is a boy they often develop slower”. That really marks the beginning our journey, we just didn’t know it yet.
At 13 months of age we called Early Intervention for an evaluation. We just knew that there was something wrong we just could not put our finger on it. Fast-forward almost 2 months later, after his evaluation; they concluded that he was “significantly developmentally delayed”. We felt like the bottom just dropped out of our life raft and we were drowning. We finally made it to the surface and took a huge breath and that is when we knew our lives were to take a different path than we had expected.
For the next year and a half Lucas qualified for Early Intervention Therapy and we fought to get everything we could through Babies Can’t Wait. We had no time to waste. Lucas needed to be brought into our world and it needed to happen fast. He had no words and it was heartbreaking to watch him struggle to communicate. Many days both he and I ended up sitting on the kitchen floor in tears. Lucas crying because I would not give him what he wanted without at least signing for “more” or uttering some kind of an approximation for what he wanted. I cried because I wanted to give him everything he desired without him having to work for it. I cried because we didn’t know if he would ever talk. I cried because my beautiful baby boy was struggling and I knew then he would have a lifetime of struggle. But alas, this was the best thing for him. He was forced to interact with us in order to get what he wanted. To this day there are tears of frustration on his part and ours, but we have learned that it is what is needed for growth.
We have been blessed to have an amazing team of therapists that not only work tirelessly with Lucas to teach him the valuable skills he needs to learn in order to function, but also they have empowered us as parents to become active participants in his treatment plan. They give us the tools we need to ensure success. They continue to help us with strategies to work through his multitude of sensory issues as well as many other obstacles that he faces while trying to navigate our daily lives. They even encouraged me when I decided that I would take a training course on how to implement Applied Behavioral Analysis therapy in the home. It taught me how to be both mom and therapist, which is what I needed in order to feel like I was making a profound difference in his life. Our family will be forever grateful to our dream team of therapists that have helped us along the way. Without them we would not hear the sweet little voice of Lucas as he says, ” I want more tickles please” or when we say “I love you” at the end of every day he can now at least say it back. With out them our little boy would be lost and so would our family.
Autism is an expensive disorder to treat that requires a lifetime of therapeutic intervention. There is no cure, only the hope that we can make his life as fulfilling as possible and give Lucas every opportunity that he should have to find happiness and to reach his full potential, whatever that may be. Hours upon hours of one-on-one interaction between trained specialists and those afflicted seems to be the only solution. In order to make this happen it costs money. Most families do not have access to those types of funds, and we are no exception. Even with state funding and insurance coverage it just isn’t enough to cover all the expenses to ensure proper therapies that are vital to his recovery.
It has been almost 2 years since we heard the words that will forever resound in our minds and our hearts, ” your son has autism”. It was just one week after having given birth to my younger son and it changed the course of our lives forever. Today, Lucas is doing beautifully. He is a happy engaged little boy who is now speaking. He is still significantly behind his peers in many areas but he has far exceeded our initial expectations from when he was first diagnosed. He is a remarkable little boy. He still has Autism and always will, but he has improved dramatically with therapeutic intervention.
It has been an arduous journey thus far and we have no doubt that things will be difficult in the future. However we face each day looking forward to all the new things that Lucas will accomplish with the assistance of the much-needed therapy that he receives. Most days we look forward and can face the challenges that lay ahead. On the real difficult days we pause to look back to see how far he has come on this journey. That gives us hope for the future.
