I don’t know a single parent who hasn’t ever felt the pangs of earning the self-proclaimed “Parent of the Year” award, except maybe the one who has just become a first-time parent. We all say and do things we wish we could take back a millisecond after the occurrence. We’re human and it happens.
When your child lives with an ongoing condition, whether it be an illness, disease, or disorder, there will come a time that you question yourself as to if there is anything you did to cause this or anything you could have done to prevent it. It’s simply not a question of if you will question yourself, but rather when. Even as ridiculous as it may seem that you could have done something to cause your child a struggle, you will still ask the question, “What if?”
Our days are not all horrible or all happy, but for the most part, we have a pretty fantastic joy-filled family life. Yet, there are those days which seem to host more struggles than triumphs and I start to wonder The W’s: What? Why? When? Why? Yes, I know I did “Why?” twice. In the beginning, I asked “Why?” nearly every time I turned around. There just wasn’t ever an answer that made me stop wondering. I think it’s all part of the process.
I would never call our diagnosis a tragedy because our son was the same amazing young man we loved to the moon and back on the way home from the clinic as he was on the way there that morning. No label can change who he is or the deep, unexplainable love we have for him. However, it was the beginning of a grieving process. One in which we had to let go of some of the preconceived expectations of how life would be based on our experiences with his three older siblings. In that instant, as much as everything we felt for and about him stayed the same, everything changed. We no longer knew he would be among the top of his class academically, or that he would love to sing and dance and act, or that he would amaze us with his reading abilities or fill our home with laughter with his facial expressions and sometimes uncontrollable laughter. Of course, none of these are guarantees. We did not KNOW these things, but rather anticipated, even expected them because his older siblings had all done pretty much the same to a certain degree.
But based on his siblings, we, or at least I, anticipated he’d be reading by kindergarten (He was not.); he’d be a natural on stage (He is not as naturally inclined to enjoying the bright lights as his siblings.); he’d be the top of his class (He’s up there, but has a tremendous team working to ensure he can grow and develop and hopefully someday close the gap between him and his peers.); and that he’d keep us in stitches with his sense of humor, just as his brothers had, and yet, he does.
Once I began to realize and accept that a label will not and cannot change who he is, I really began to move past the, “Why?” and onto the “What?” What is autism? What does it mean for him? For us? What can we do to help him? What now? And of course, “How?” How can we possibly help our son deal with a disorder we don’t even understand? Again, Easter Seals, support from staff there, and seeing that we were not alone in this made all the difference in the world right from the beginning.
I’ve heard it said that everything in life will somehow come around full circle. It’s so interesting to me that here we are, not even two years into knowing we are living on the spectrum, and people are already connecting us with friends of theirs whose children have recently been diagnosed. It’s one of those clubs you never really wanted to belong to, but once you’re in, you’re in for life. And you know there’s no way you could make it through alone, so even though you may not really know these people, professionals who are helping you with your child, you look at them as family because my word, where would you be without them? And other parents, those who make connection with you through mutual friends, the ones you’ve never actually met before, but you could stay up half the night in an online conversation because they get it. They know exactly what you are going through because they’ve been there. They know the grief, but they are farther along, so they also know the joys and the blessings amidst the heartaches and you hold onto the hope that if you can just make it through another day, another week, another month, that you, too, will someday be there, where they are, in the happy place where children are making progress, and parents can once again sleep at night knowing that their child will be okay. No, they’ll be great. Expectations and dreams may change, but there are still expectations and dreams, and they are just as important and exciting.
You see, autism is not a parenting fail. It is a challenge, but one that you can rise to and with a lot of work, you, your child, and your family as a whole can overcome. My mom shared the most precious clip with me this week:
Autism Is Not a Parenting Fail
You’ve done nothing wrong. You didn’t cause this. You haven’t failed your child. You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You’ll need more patience and time. Your child will have intense emotions and needs. But, he’ll also have intense curiosity, drive, determination, desire, persistence, and individuality. What you’ll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.
A happy and fulfilling life? Sounds a lot like success to me!