Max was officially diagnosed with Autism when he was 3. Initially, some people disagreed with his diagnosis because he would smile at them and wave. Little did they know he had worked on that for about 2 years in therapy! Other people thought he couldn’t have autism because he gave hugs. But all of the signs and evidence otherwise pointed to the fact that he did, and we learned battling misconceptions about his invisible diagnosis would be part of our journey.
It had been 2 years since Maxim’s early intervention evaluation when I first heard global developmental delay, and that doctor’s appointment when I first learned that an intellectual disability may be in his future. Max had made progress, but he still wasn’t talking and his challenges didn’t go away. Thankfully, I had made progress too. I was learning how to better support Max so that he was less frustrated, and we had started to find joy as a family.
During the years in between then and now, the years where I had to wait and see….I eventually found the answers to just about all of those early questions that I had. It took time and perseverance, and the answers didn’t come all at once. They came slowly, some from personal experience and many from talking and sharing with others. Here is what I learned.
Max is in fact ok. He is better than ok, and he is very, very happy! Our family is ok. There is joy and also beauty, tenderness, and love. Oh my goodness, there is so much love! The joy does in fact soften the hard edges that the challenges bring, and the challenges make the joy that much more precious and powerful. But I think it is the love that gets you through one challenge to the next. It’s not just the love you have for your child, because that is there even in the midst of the darkest times and most overwhelming questions. It’s the love that you find in the most unexpected places as you travel on your journey.
There are struggles and hard parts, and sometimes they will bring you to your knees, but that comes with parenting whether your child has special needs or not. The hard stuff doesn’t last forever nor does it ever really disappear, but if you build your tribe, their love will help. “Typical” and “high functioning” don’t mean greater joy than "severe," and different is absolutely not less.
Last, I learned that while perseverance is necessary, it’s ok to wave the white flag and say you are hurting or scared. Please don’t do what I did and let self doubt or fear stop you from reaching out to talk to others! Our lives improved, both Max’s life and our family life, once I started talking and sharing our journey. The more you talk about your experiences and connect with other people, the less alone you will be. They say it takes a village...and if you want to, we hope you will be a part of ours.
