Today your child was diagnosed with autism. You may feel relieved, scared, sad or all three. But remember your child hasn’t changed nor has your love for her. The only thing that has changed is her medical chart now includes a diagnosis of autism.
The first days, following an autism diagnosis, are perhaps the hardest because you feel like you should be doing so much, yet, your mind is still adjusting to the fact that your child has autism. You have not even processed the fact that you are a special needs parent. Because in the first couple of days, you are processing how the diagnosis will impact your child’s life you have not even begun to ponder how it will impact your life.
Somehow you know your life will never be the same but you don’t how it will be different. As parents our identities begin to morph because of the intensity of love for our children, we start picking up their interests, their accomplishments become our favorite talking points with friends, and their challenges keep us up at night. A special needs parent’s identity can be completely overtaken because the intensity of being a special needs parent is significant. Being a parent to a child with special needs is a completely different experience than being a parent to a typically developing child. In my experience, special needs parenting is much more emotionally, physically and financially intense.
Special needs parenting is like getting on a lifelong rollercoaster, the highs are higher and the lows are lower. There is nothing better in this life than when your child accomplishes something that doctors, teachers or therapists said they would never accomplish. There is nothing harder in this world than accepting that your child will never meet that milestone. And in some regards you never really accept that your child won’t reach a milestone because you never want to give up hope but the not knowing becomes almost unbearable.
So to parents who are just realizing that they are members of the elite club of special needs parents, I say to you “don’t worry you got this.” It won’t be easy but it won’t be all bad either. You will grow as a person in ways you never thought possible, you will learn to accomplish the impossible in the name of our child. Your patience and compassion will be magnified 1000 times over. You will realize how strong, organized and brave you are but you won’t consider yourself a hero because you are not. You don’t want to be seen as a hero you want to be seen as a parent just as you want your child to be seen as a child not as a child with autism.
The days will be long (because your child probably won’t sleep well and will have more energy than the energizer bunny) but the years will be short. There will be times when you look back and wonder how you did it all you realize you just did what had to be done. You will rise to the circumstances and you will be the best version of yourself and you will become the parent, scheduler, driver, insurance-arbitrator your child needs you to be. You will learn acronyms that had no meaning to you before IEP, FAPE, ADL, OT, PT, SLP, ABA, IDEA, ADA and so on.
Once you hit your stride you will realize this is your life and you won’t know any different. Yes, there will be days you long for things to be different but who among us doesn’t want something to be different in their lives. There will also be days when you go to bed with your heart so full of joy you don’t know what to do. Embrace those days and remember that a milestone is to celebrated whenever it is reached whether for your child or for you as a parent.