I never saw it coming. She wasn’t on the pediatrician’s radar. She didn’t “appear” any different just by looking at her. It’s absolutely called Pragmatic Language Syndrome and on the autism spectrum were the last words I expected to hear about my daughter. That day I sat on the front porch reading the report with tears rolling down my face. Was it my diet? Was it my age? Was it her premature birth? The medicine they gave to me intravenously while in the hospital? They say it was none of those. It was just who she is and I would not change her. You are going to get through this. It’s going to be okay. It is okay to cry and be nervous, but once you get through the acceptance, the sky is the limit. When my daughter was first diagnosed, I had no idea how to begin. I was scared and couldn’t picture what the future looked like. Raising a child with an intellectual disability can be a daunting and exhausting task. There are appointments to keep, social stigmas, and family members must cope with the daily stress of seeing their child struggle. Furthermore, as a mother, I know these difficulties will last a lifetime causing me to feel a range of troubling emotions. It has been natural to feel grief, resentment, disappointment, and frustration. Sometimes these feelings can lead to feelings of guilt, hopelessness, and depression. But seven years in now I can say without hesitation it is the most beautiful path I could have envisioned. Some of the stones are wobbly and disconnected, but the journey is full of curiosity and wonder. I have learned how to appreciate things many take for granted. In my eyes, her disability is a form of beauty in her brain. Everything is the way she perceives it — and that is okay. It is hard and at times overwhelming, but it is beautiful.
My best advice is to learn everything you can about your child’s disability to help your child. Become an advocate. Attend therapy. Push the school. Seek out, other parents. Attend support groups and workshops. They are a great respite. I have met and created friendships with so many amazing people that I would have never without being on this journey. Always remember your job as a parent is to help your child be the best that they can be despite if they have a disability or not. They love you and need you. I couldn’t be more proud to be her mother than when she looks at me and says “I love you mom and I don’t know where I would be without you in my life.” Though she continues to have challenges, she has persevered and she is MY hero!