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Ties That Bind: To the parents whose child has just been diagnosed

This guest post is by Jill Briesch, a tax accountant from Dallas, TX who has two sons with autism. She and her family are also the DFW Node ambassador family for the Autism BrainNet Initiative. This post is part of our Ties That Bind blog series that highlights the shared experiences that people in our autism community have had. Have a story you want to share? Email us your blog submission at AutismSpeaksBlog@gmail.com!

Dear Fellow Parent,

I close my eyes and see you clearly, glued to your chair in the evaluation room.  Your beloved child has just been diagnosed with autism, perhaps the most enigmatic spectrum developmental disorder of this era.   

‪The experts continue to speak but you don’t really hear.  You’re looking at your son or daughter, perhaps not even two years old.  You intrinsically realize the odds - the odds of your child suffering verbal and physical abuse, the odds of your child getting a fair shake in the education system, the odds of your child attaining full independence, and the list goes on - can be described as nothing short of terrifying. These are not the odds you want for your baby.

I know because I’ve been there. Twice, in fact.

This is what I wish I’d known back on that day when I was the parent in the evaluation room for the first time. 

This journey will require persistence beyond your wildest dreams. You and your child will work as hard as you possibly can and then push still harder. Dawn to dusk, day after day. Days will turn to months and at some point you will realize that years have passed. You don’t know it now, but you will find strength you never knew you had. It's what you do when there is no other way. You will come to understand the full meaning of love, the most powerful action verb in existence.

I see you now, a few years out.  You’re akin to an extreme marathoner, pressing on relentlessly, wringing the absolute most you can out of every moment.   You’re a different person now, fellow parent. To say your life looks different is an understatement of monumental proportions.     

You see miracles every day, for you’ve learned how truly remarkable the ordinary can be when your child had to climb a mountain to achieve it.  I recognize what I see in your eyes when you look at your little one.  Love, pride, fierce determination to move heaven and earth to help your child.

And truth be told, I also see fear, ever present in the background. You’ve trained yourself to focus on the right now, to meet the needs right now, to work on the right now goals.  But your nights, they are haunted by questions with no answers. “How can I ease her struggle?” “Is he getting everything he needs, and if not, how do we stretch what is already at breaking point to get it?” “Is she ever going to really get there?” “What’s going to happen to him when I’m not here?”

I’m inspired by you, dear fellow parent.  Not because you’ll do it all perfectly, but because I know no one on this planet who will try harder for longer. Today is a difficult day, no question. But I believe in you and I believe in your child.  Great gains are possible with hard work. Tomorrow is day one in the saddle. And even though you may not see me, I promise I’m somewhere on this same long and twisty path, fighting with every fiber of my being for what our children need. 

You are not alone.

Has your child been recently diagnosed with autism? Autism Speaks is here to help. Call our Autism Response Team at 888-288-4762 (en Espanol 888-772-9050) or email us at familyservices@autismspeaks.org. The Autism Speaks 100 Day Kits for Newly Diagnosed Families of Young Children (0-4) and School Age Children (5-13) are also available free of charge to help guide you through the important weeks following an autism diagnosis.

Have a blog that you wanted highlighted in our Ties That Bind blog series? Email us your blog submission at AutismSpeaksBlog@gmail.com!

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.