A Letter to the Mom Who’s Child Has a New Autism Diagnosis: Here’s What I Wish Someone Would’ve Told Me

And what I feel is the hardest thing … you may have to consider putting your child in a care home. It may be at 18,19 or 21. It could be 10. It depends on the child. I say this because this is my reality. I wish someone had warned me of this when my son was little. No one told me that this is part of the journey for a lot of autistic children. As he grew older, I knew that this was inevitable for my son, but I always assumed with surety it would be after high school when everyone else is saying goodbye to their kids as well, sending them off to college or to work and to stand on their own two feet. At least this way it wouldn’t feel so glaringly different from everybody else. It’s just his destination point that I had to reconcile with. I had resigned myself to this, and then puberty happened. Aggression crept out. Running away began. And then people started suggesting the idea that he would possibly have to go into a home before being an adult. My son is 10. He’s just a child. Who imagines sending your baby to live away from you, while the rest of your family stays together. I wish I would have known. I would have done so much so differently. I would have cherished and appreciated the time I had with him at each stage as he grew up. I thought, Why didn’t anyone tell me, warn me this might happen? Grieving the possibly just around the corner of the loss of your child breaks you in two. When will I get to see him? We see him all the time right now because he is with us, but living somewhere else, realistically, how often could we really visit him? Will he feel abandoned? I will miss him so. What will I do without him? How will we be able to eat dinner knowing he is eating somewhere else? Will they treat him well? Love him like I do? Did I fail him? What will my other kids think? These thoughts and more will go through your head. You may even at times think of the rest and relief if he was in a home, and you feel guilty. Please don’t be so hard on yourself. You are tired, worn thin and struggling. That’s just your situation talking, not your heart.

You may not have to deal with some of these things. Your child may be able to function much more, and if so I am so happy for you. Yet, I know your struggles will still be there. Each parent struggles with different things and in different ways. Autism is so hard on a family and on the child who has it. They feel trapped in a body, not able to express themselves.

When your child has a new autism diagnosis, focus on what’s good.

But autism can be beautiful. You will learn how to love unconditionally, even when your child doesn’t show it back. They have an innocence that doesn’t go away, and their pure fascination with even the simplest of things teaches you to stop and enjoy the things of life we would have overlooked and taken for granted otherwise. Like the sky, water, sand, jumping, dancing for no reason other than to move, blowing bubbles for hours, seemingly random notes on the piano, birds flying, cat whiskers and more. They have a unique way of looking at the world that without them you never would have had the chance to see. They truly do “stop and smell the roses.” It’s beautiful.

I’m writing this because one night, as my husband and I were in bed after a very taxing Taylor day, I started to cry … hard. I wondered, Why did no one warn me? Why didn’t someone tell me this would happen? Why wasn’t this brought up when he was younger? Why didn’t anyone prepare me, tell me that one day we might lose him?  

See, we are having the conversation about how long Taylor can stay at home with us, and where he will go after. I had to face the idea years ago that one day he would have to leave home, and most likely it would not be to an independent home of his own. He was headed to a group home. What I hadn’t thought of, until now, is that it might have to happen while he is a teen; maybe even an early teen.

My baby …

He’s just a child, a boy. No one imagines losing a child, and it never enters a typical mom’s mind that one day she would have to give him away to a new home. He is my baby, still in my care. You are supposed to care for, nurture and provide for your children until they are adults and move away. This isn’t supposed to happen. Why didn’t anyone warn me?

This isn’t coming from an angry bitter why, why, why. It is from a broken heart, wishing she had known. Wishing she had done so many things differently. Praying that God would forgive her and grant her just one more year with her son. Then she will beg for another … and another … and another. She will cry because she fears she failed. She wants one more chance to get it right.

So you see, new mom, I felt the need to warn you. Appreciate each day you can with your child. Notice I don’t say every day. Some days will just plain suck. Feel free to not enjoy those days. Don’t feel guilty because you aren’t reveling in delight from the screaming, pinching, hitting, bruises, crying, meltdowns and more. It’s hard. Just try to see it in the light that you know one day your baby may have to leave.

Lastly, the only reason I have survived this journey is Jesus. It may sound cheesy, or some cliché thing to say, but it is true. My faith hasn’t been perfect, but he provides hope for a better future, and assurance that I don’t suffer in this life for nothing; that one day, I will be honored for the hard work I have put in … the bruises, scratches, lost sleep, tears, worries, frustration, patience, and perseverance. Trust me. It will all be worth it.

Much love and prayers to you and your family. You are a good mom!

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Sarah Adams
Sarah Adams is a professional soprano opera singer who traded the stage for a principal role in domestic life and is now stay-at-home mom to her three kids, the oldest of whom has autism. Sarah blogs at The Stay at Home Soprano about what life looks like for a family dealing with autism, her life as a stay-at-home mom, how she still remains connected to her opera roots, and just plain crazy life in general. You can also follow her at her Facebook page.