Will He Be OK? (Part 2 of 3 of Our Story)
Updated: Jun 23, 2021
After being told Max had a Global Developmental Delay, possibly Autism, and that he may also wind up having an intellectual disability, I felt terrified. Max started all the therapies and even, at just 2 years old, got on a little bus to attend a special program that was going to help him learn and receive all the help he needed in one place. I couldn’t believe my baby was leaving me to go to “school.” He Loved it! I cried like a baby!!!
Up until this point Max had already struggled so much. He still never slept, and he cried much of the time. He did great in therapy and his special program, but at home he was melting down. It was clear I had a lot to learn, and Max needed all of our love and support, but I didn’t know at the time if that was going to be enough. I had been told to, “Wait and see,” but my heart just couldn’t do that.
Before I go any further, I want to point out some very important things. My description of our beginning doesn’t mean that children on the spectrum or with special needs aren’t happy. It doesn’t mean that a characteristic of autism is a lack of smiles or joy. I have heard many stories of children on the spectrum who were very happy babies. It just happened that for Max, his start in life was one of discomfort. Colic, belly pain, sinus and ear infections, lack of sleep, and sensory overload can make anyone unhappy. This can happen for kids whether they have disabilities or not.
But, I’m going to admit something really hard and vulnerably honest in case there is anyone out there like me who might be feeling like this or going through something similar. At the time, I wasn’t able to separate the struggle and pain Max was experiencing from the diagnoses of Autism and Developmental Disability. In the beginning when I heard “characteristics of autism” I associated that with his struggle, and that made me Scared! Autism and disabilities didn’t seem beautiful and wonderful at first. It seemed uncertain and difficult. It seemed frightening and sad. I didn’t want Max to have Autism, or any other diagnosis for that matter.
I knew each person with autism was different. I knew there were very happy children and adults with autism and disabilities. What I didn’t know was if my son’s autism was going to allow him the same happiness. He was so different from any other child on the spectrum I knew. Maybe the autism and developmental disability in him would stamp out his light and we were destined to watch him struggle... and only struggle.
I’m not saying what I felt was right, but it is real. We hadn’t yet begun to experience the magic and beauty of seeing the world through Maxim’s eyes. I was so focused on the challenges, I was struggling to see the positives. We hadn’t yet experienced the promise and potential that having a child with different abilities can bring. His beginning was hard, for both him and for us, and we thought at the time that “hard” might be all there was.
At that time my heart was desperate for hope. I was certainly not going to give up on my boy, and so the next phase began. Since I didn’t know what the future held, I did what many of us do...I turned to the internet. My online search consumed just about every spare second of my days and my nights. When I should have been trying to fit in an hour or so of sleep, I was searching. I wanted to read, and see, and learn as much as I could about what our future might hold.
I found a lot of informational articles and materials about autism and disabilities. I read about the signs and characteristics, and I saw a few video clips of children suspected to have autism. I read informational things, and very scary things, and some positive things about children who started out with severe disabilities but with early intervention and therapy became high functioning and independent. But none of that was what I was really looking for.
The biggest questions I had were, “If Max continues to have a very high level of need, if he continues to present with significant delays, will the hard parts and the fears I have for his future ever be softened by joy? Will he be ok? Will he be happy? And if it doesn’t get any easier is there anyone else out there who feels like I do? Am I the only one who is having a hard time like this?”
I knew a few families who had children with special needs, but they didn't seem to feel sad like I did. Their children seemed happy, whereas Max did not. That doesn’t mean they didn’t have similar thoughts, fears, or challenges, but at the time I was much too embarrassed to ask. Talking to them about it was admitting I was scared, and what if I was the only one? I sometimes thought I wasn’t strong enough or good enough to help our little boy, and that just made watching him struggle harder. I felt like I was failing. I believed in God and His help, so very much, but I didn’t trust myself, and that too made it hard to talk to other parents.
So the internet would have to do. In my desperate search of the internet I needed to see families, lots and lots of families, imperfectly perfect like ours, raising children with disabilities. I wanted to hear them telling their stories, talking about the challenges, admitting to fears and questions like mine, and hopefully, optimistically, and confidently also finding the joy. At the time, though, I didn’t find what I was looking for.
Answers to my questions may have been out there, but I didn’t find them, and to be fair, I wonder even if I had found a few stories if they would have been enough. There was always a battle in my mind that made me wonder, “If I don’t find a situation exactly like ours, it might mean it worked out for them, but it still might not be ok for Max or for us.” I know this may not make sense or may make me seem a little bit crazy, haha, but it is honestly where my head was at in those days.