Jakob was diagnosed when he was 3 and a half. It wasn’t a surprise, I had suspected it since he was 9 months old. This was 14 years ago this month and back then, doctors were hesitant to diagnose before the age of three. So for almost 2 years, all we heard was that he had sensory processing disorder. He was receiving a little bit of treatment for that but nowhere near what we would have done if someone would have just told us that he had autism.
It was frustrating and it honestly felt a bit cruel. I knew something was wrong, we needed and wanted help. The constant delaying of the inevitable gave me false hope. It also made me feel like I was crazy and paranoid and maybe had some psychological issues of my own if I was so sure that there was something wrong with my kid. It was such a scary and stressful time. When the diagnosis finally came, it was terrifying. And it was also a relief. We finally knew what we were dealing with. Well, sort of. We didn’t know how this diagnosis would present itself in Jakob. We didn’t know what kind of road we had ahead of us. We didn’t know anything new really. But we had a label.
I can remember asking the doctor, “Will he ever speak? Will he ever look at us? Will he have friends, go to school, play sports? Will he be able to live on his own or have a job? Will he ever hug me or tell me he loves me? Will he ever even care that I’m in the same room with him?” The answer to all of my questions was the same. The doctor said, “I don’t know.”
At that point, they told me that OT, Speech and Physical Therapy would probably help. They said that there was one behavioral treatment that was showing some promise in decreasing negative behaviors. And that was it. We were told that autism was a “lifelong disability with no cure” and they didn’t know how he got it. We left the hospital with a folder that had a couple flyers and phone numbers in it but no real plan. No clue what to do next.
Dazed, confused, scared, helpless, hopeless and lost. For starts. More emotions than I could count. So many questions. Where to go? What to do? Who to call? How to explain this? How to pay for it? What does our future hold? Where will I find to time and energy to fix this? Can it be fixed? Why is this happening? What did I do wrong that caused this? Will I ever be able to survive this? For starts. More questions than I could count and far too overwhelming in the beginning to find any answers.
It took years before I really felt like I was figuring anything out. It took me that long to find the strength and confidence that I needed to really know that no one knew Jakob better than I did. And to realize that whatever it was that was out there to help him, it was up to me to find it. And that’s when our journey truly began.
Diagnosis day seems so long ago. So much has changed and Jakob has come so far. Aside from an occasional flash of fear or moment of sadness, I’m good. Actually, I’m better than good. I’m great. And Jakob is an amazing, fun-loving kid who speaks, has friends, goes to school, plays sports, hugs me, loves to hang out with me and says “I love you, mom.”
Life with an autism diagnosis has turned out to be pretty awesome. The experiences I’ve had with Jakob have been so rich, so meaningful. My relationship with him is the sweetest and most tender relationship I’ve ever had. The love is so pure. As is his heart.
Time and lots of love and acceptance brings clarity. And I am clear, Jakob and his autism are a gift. The best one I’ve ever received.