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How to Grandparent a Special Needs Child

One mom's plea for her parents' empathy after an autism diagnosis


(This article originally appeared on FindingCoopersVoice.com.)

I called you today, Mom and Dad. You knew today was the day. The day of the appointment. The appointment that would either relieve all our fears or change the future. You knew the doctors and teachers were throwing around words like “autistic” and “developmentally delayed.” You knew I refused to believe it. You refused, too (and I appreciate that more than you will ever know).

Our Family Was Changed Forever

We told each other for a long time that he was fine. We reassured each other daily. He was definitely a late talker, possibly even a late bloomer. We found comfort in the fact that boys often develop slower than girls. We shared stories of other toddlers who flapped their arms and lined up toys (which often are early signs of autism) and turned out fine. But yet, our hopes were wavering. The doubt was building.

We got the answer today.

After three years of worrying, hoping and refusing to see what was right in front of our eyes, the psychologist said my son — your grandson — was autistic. She described him with words like “severely disabled” and “delayed.” She said he will probably never talk or be potty trained. His future is unknown, she said.

In a 90-minute appointment, our family was changed forever. Just like that.

And now, I am telling you that your grandson is autistic and his future is unknown. As is mine. And yours.

Not only do you have a grandson that has special needs; you also have a daughter who is heartbroken.

I Realize This is Hard for You, Too

I am turning to you as a struggling mom who feels her baby is broken, and I don’t know how to fix him. I want to tell you I am sorry that I gave you a broken grandchild. Tell me how to maintain hope. Tell me how to get through this.

I know you are struggling, too. Not only do you have a grandson who has special needs; you also have a daughter who is heartbroken. You are feeling it on multiple levels, as a grandparent and a parent. I can only imagine the weight that you are carrying.

You had a vision of being a grandparent to this little boy. You already bought a fishing pole and a bike that he is unlikely to ever ride. Our family is different than we expected, Mom and Dad.

Here Is What I Need

You are my parents — the people I turn to when I am hurting. But this is uncharted territory. Our needs are more intense. Considering how this change has, and will, impact our family, here are the five things I need from you as grandparents to this special little child:

1. I need you to give me time to grieve. And I need you to grieve as well. We pictured a little boy and a future that won’t match up in reality. Go easy on me and give me some time to accept this. I love your optimism, Mom. It’s one of my favorite things about you. Just not right now. Be patient with me as I work through this.

2. I need you to give me reassurance. I need to know that you love this grandbaby as much as all the others because I’m scared that you won’t. I know he is more challenging and he is hard to connect with. I get it. I’m feeling it, too. You can’t do all the same things with him as the other kiddos. Please love him and find a different way to enter his world. I know you are going to miss out on special moments like Grandparents Day and trips to the zoo. I want you to know I understand how that feels. I am missing out, too.

3. I need you to avoid asking me questions about his future. I don’t know if he will get better and I don’t know what the future looks like right now. I can’t take those questions, because I don’t know the answers. You are looking to me for hope and it’s gut-wrenching.

4. I need for you to stop telling me stories about kids with disabilities. It seems like every person I know is suddenly an expert on my child’s disability. I am constantly getting emails and phone calls about cures and remedies. I know you want to help me by fixing him. I can’t hear about Aunt Carol’s daughter’s autistic neighbor right now. I’m sorry.

5. I need you to listen to me. I need you to call me or come over and sit with me. I need you to ask me about my day. My world is doctors, therapies and insurance companies. I can’t talk to my friends about this stuff and worry I’m losing my sanity and my identity. I am now the parent to a disabled child and don’t feel like I fit in anywhere anymore. Please listen to me go on and on about this. I need that more than you’ll ever know.

Our child’s disability feels so huge right now, but I believe that one day it will be better. We will find our place as his family and we will be stronger than ever. Let’s be patient with each other as we paddle along this journey together. Thank you.

By Kate Swenson
Kate Swenson is a mom to two rambunctious boys, one with nonverbal, severe autism. She shares a glimpse into their life in an honest and uplifting way at www.FIndingCoopersVoice.com and on Facebook at https://www.facebook.com/findingcoopersvoice/. She is also a Digital Project Manager for the PBS Website, NextAvenue.org.

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