It was Autism Awareness Day yesterday. I read so many blogs, articles, and social media posts about raising awareness (which has filled my heart with joy). I have been pretty quiet for the most part about our journey into Aspergers and today, I want to share a little hope by writing a tiny nugget of our story. It has been challenging to write this post simply because looking back is emotional. I can clearly see how God gently guided us to a diagnosis and was holding us up during this tough time. Meet Carson...
Our Carson was a spit-fire of a little boy. Our firstborn, he helped us dig the trenches of parenthood in unexpected ways. I have learned how to be a better human from my son. He was a late talker, and didn't put sentences together fluidly until he was three and a half. He would mostly grunt and point as communication. He was strong willed (times a million and a half), he was very particular about toys, foods, and routines. His tantrums were Oscar-worthy and would test the patience of the most seasoned parent, which we were not. Every parent waits in anticipation for their child's first words, first steps, first poops, first everythings. Carson was hitting those firsts in his own timing. Our pediatrician, parents, friends and family repeatedly told us "He's fine! He will do such-n-such when he's ready." Being first time parents, we took their advice and settled into raising this feisty, uber silly, little boy. Needless to say, things got ugly. I hate to be exclusive but, if you have never lived with someone on the Spectrum, you won't get it and it will not flatter anyone to try and explain it. Moving on...
We spent the first 9 years of Carson's life trying desperately to figure out the whole discipline/parenting thing and failing miserably. I should mention at this point in our lives not one-single-person had ever mentioned or suggested to have him tested for anything. I received a billion parenting books and advice from good intentioned people, I researched the internet for parenting help and some guidance, nothing seemed to eliminate the stress of raising our son. There were many dark, dark days that I spent in tears not knowing or understanding how I could mess up a human being so bad. It was a very lonely time; no one seemed to see what Eric and I were watching develop in our precious son.
We didn't understand how deep we were until his siblings began school. Their approach to life and learning was so different in comparison to Big Brother. In fourth grade we were blessed with an incredible teacher for Carson. Mr. Jacoby was the first person to ever suggest that Carson may need to be tested. He worked with Carson and us throughout the year and really was an advocate for him in the school system. This same year, Eric and I started watching a show called, "Parenthood". There is an actor on the show, Max, who has Aspergers. Every episode we watched we would look at each other and nervously giggle (or cry) because the character was so much like our son. We connected with the struggles of the family but, our son didn't have Aspergers.
Throughout his fourth grade year, we became more and more educated about who our son was and how he functioned. A few others began to suggest he might be struggling with something. He started acting out more in public and school. We finally took him in to be tested. We really expected we would walk out with an ADD diagnosis and that was that. Long story short and hours of testing later, he was diagnosed with ADHD, OCD, and ODD. We would discover a year and a half later that he was misdiagnosed.
After the initial "triple-fun" diagnosis, we were still at a loss on how to raise and love our son the way he needed. I studied like a crazy lady all about ADHD/OCD/ODD. Still failing hard to help my son. After almost two years and a little more education in my brain, we decided to have him re-tested by an Autism Specialist. That is where Dr. Jim and Dr. Carol came into our lives to save the day.
D-Day (aka Diagnosis Day) felt a little surreal. I remember sitting in Dr. Carol's office as she sweetly explained a plan to help our son. I wanted to bawl right there on her couch and hug her forever. Someone had finally said it out loud, our son had Aspergers. I can't say that we really believed it immediately or accepted that our son now had "a label". I do know that a mammoth sized weight was lifted because we could move forward to help our son and someone actually believed us. We weren't crazy.
We began therapy immediately. Things got drastically worse before they began to get better. We started Carson on Neurofeedback therapy. What an insanely fascinating education to learn about the brain functions and watching our son begin to balance himself.
Our Boy is now in his teenage years. That brings challenges of its own but, layer those hormones with chemical imbalances and you've got a super situation on your hands, like code red. We have seen tremendous growth in his character and academics using Neurofeedback. We still have a long road to travel but, the future for my son is so exciting and promising.
There is hope out there for parents with children on the spectrum. Its expensive and a battle in the school system to get kids the help they need. I am so thankful for individuals out there pursuing treatments, fundraising, and advocating for families. My son's experience with treatment is proof that there is hope.
I can't put into words how much I adore and love my son. He is an incredible kid. He has taught me so much about love, respect, individuality, strength, perseverance, and humility. How on earth did I get so lucky to be his Mom?
I hope reading a little bit of our story will encourage a parent out there with a child who needs an extra dose of patience and love. Hold on to your Baby and be their strength. Imagine how frustrating it is for them to constantly be misunderstood. When that little sweetheart gets on your very last, God-loving, nerve, remind yourself that their brain is misfiring, it will allow you to have more grace. There is help available and I pray that the world will begin to see how desperately there needs to be a mental healthcare intervention.
If you would like more information about Aspergers or Autism, please visit: http://www.autismspeaks.org