Struggling to Find My Role After Placing My Son With Autism in Residential Care

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Evidently I’ve been seeing myself all wrong.

This was made clear two days after my last birthday, as I stood checking my phone for emails while waiting in line at the post office.

There, a woman about 10 years older than me swept in and called out cheerily, “I just love seeing seniors using cell phones!”

I received this news better than you might expect. Too dumbfounded to take offense, I replied mildly that I had indeed entered official seniorhood just that week, but still thought of myself as young, hardly a grown-up at all.

“You know,” I continued, leaning forward confidentially, “besides using a cellphone, I still listen to rock and roll!” I cocked a sly brow. “And Eminem is, like, totally awesome!”

I’m afraid my hipness failed to register, but at least the woman next in line got a chuckle from my response.

That encounter made me wonder, though, if the self-image I’ve carried for years bears any resemblance to how others see me.

My son’s recent move to a new living situation has me wondering, too, what impression I’m making on his care team, a vulnerability I didn’t anticipate after years of these transitions.

His case manager Aaron has advised us to expect a change in our relationship with Daniel, as he responds to a more challenging, stimulating environment, and we give up our roles as day-to-day caregivers. We’ll gain freedom to enjoy more satisfying interactions and be part of our son’s life on a deeper, more meaningful level.

“Your relationship won’t be better or worse,” Aaron has said a number of times, “just different.”

daniel

It’s a spiel I imagine him giving all the newbie parents letting go of children whose needs have so dramatically shaped their lives. For our children’s development to be successful, we parents must adjust just as they are doing. It seems to be Aaron’s gentle way of telling us to back off now and let them do their jobs, so our children can flourish in adulthood.

Yet I fear sometimes that his parental pep talk is aimed specifically at me, that he senses my longing to reclaim the boy I relinquished to residential care over seven years ago. I imagine Aaron watching me, wary that I’ll sabotage Daniel’s progress through my neediness.

Does he see a woman clinging to an ideal already gone, the boy Daniel still was to me when he left home? Back when I was the one who knew him best, the person he needed most, the one he sought, in his singular fashion, to comfort him?

Does he see a mother, whose son has spent nearly a third of his life away from home, pining blindly for the day he’ll come back? A mother threatened by her son’s move toward maturity, who fears losing more than she’s already lost?

As Daniel transitions into a new life and the future I want for him actually seems possible, my relationship with him feels more tenuous than ever, and I know I am that woman, whether Aaron sees me this way or not.

It’s taken me the two months since his move to acknowledge that my relief and joy at Daniel’s encouraging start is tempered by an ache for the days when he was truly “mine.” When his days began and ended with my voice, my touch, my assurances of a love that would last forever. I recognize that a part of me has been waiting seven years for him to come back home.

I want to assure Aaron that he needn’t worry, that I’m an old hand at this: I know all about letting go, the wrenching loss of doing what is best for my son. And I know, too, the freedom from the demands of caring for him. I know that freedom, and I know its cost.

It is the gradual unraveling of our relationship, the fabric of our lives worn thin by time, by distance. It is clutching the frayed edges of a bond that in all its mystery was once close and touchable, woven thick and warm and comforting through years of ordinary, intimate moments spent together, routines we made uniquely our own.

It is the recognition that in many ways my son feels like a stranger, that mere visits couldn’t fully bridge the gulf between us as Daniel grew from child to young adult, miles away from home. It is fearing that the lyrics of the Gotye song I so often listened to on my drives home from Wisconsin now apply to my own child: Now you’re just somebody that I used to know.

Maybe Aaron sees me as a mother desperate for a time gone by. He wouldn’t be wholly wrong.

But I am also a mother who has transitioned along with her son for over 20 years, a mother able to do so again. I’m a mother profoundly grateful for this fresh chance, willing to learn a new way of connecting with my son, ready to be whatever he needs me, now, to be. I am a mother who understands that love is not always enough, yet love remains more powerful than grief.

It’s Aaron’s role to ask us to step back and let go, to allow his team to guide my son toward the goals we believe he is capable of achieving. And it’s my role to do so, to let go of the boy of my memory, and embrace the young man he’s become.

But there’s letting go, and there’s letting go.

My heart will not surrender all that has shaped our lives together, or my most cherished role as his mother. That woman will always be right there, behind him.

I can’t see myself any other way.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Wonder if I Should Be Doing More for My Son With Autism

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Right around the time my son Dominic was diagnosed with autism at 2 and a half years old, I became friends with a gal who had a daughter on the spectrum. The more I got to know her, the more I realized she and I had different ways of
helping our children. While she was a very nice person, she was using what I considered a “controversial” therapy on her daughter. I won’t go into specific details, but let’s just say it made me uncomfortable. Needless to say, we have lost touch with each other.

When we decided to put Dominic on Ritalin after he was diagnosed with Attention-Deficit Hyperactivity Disorder (ADHD) at age 3, it was a really, really hard decision. I remember crying. I had a lot of doubts about putting him on the medication a such a young age. But, we saw such great results shortly after; he still remains on it to this day. I know not all parents would agree with our decision, but it is our choice.

Sadly, even within the special needs community there are parents who feel the need to judge other parents on how they are raising their children or the choices they make. An encounter with another special needs mom who challenged me after I told her what we were doing for Dominic at the time is eternally etched in my mind. She told me, “That’s it? that’s all you are doing?” I was so stunned by her rudeness that I had to walk away from her.

It would be wonderful if one therapy worked for every single child with autism, wouldn’t it? That is not the case. What works for one child, might not work for another, and that can make it extremely difficult to know what is the “best” therapy to try.

Since Dominic is terrified of large animals, I know “hippotherapy,” a therapy using horses wouldn’t be a good “fit” for him. I try really, really hard to not pass judgment on what therapies other parents use for their children with special needs because I wouldn’t want someone to pass judgment on me.

From time to time, I think of my friend who has the daughter with autism. Her daughter was talking and reading well before Dominic. I think sometimes, What if I used the same therapy my friend used? Would he be further along than he is?

kathy and dominic  I guess I could spend all day feeling “guilty” for not trying a certain therapy that could help him face a challenge, but that would be counterproductive, wouldn’t it? I focus my efforts instead on what we are doing for him each day.

I love what Dominic’s private speech therapist told me at the end of one of his sessions several months ago. She said, “I have high expectations for Dominic.” We do too.

He has already surpassed many “hurdles” since his diagnoses, and I know there will be challenges ahead on this special needs road. But I know in my heart when I put my head down on my pillow to go to sleep each night, I have done the best that I can for Dominic, and that is enough.

Follow this journey on Bountiful Plate.

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When the ‘Basics' Are Difficult for My Son With Autism

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My son showed me exactly how he planned to install a CPU into his computer yesterday. If you don’t know what that is, don’t worry. You are in good company.

He walked me through it step by step, explaining in painstaking detail how to install it, and how the actual device functions. The way it communicates, what one set of cords does vs. the other, why the motherboard goes in this spot, and so many more things that I did not understand.

I sat there in awe, so proud of the man he is becoming. He is realizing his strengths, and using them to compensate for the difficult aspects of his life. It is exactly what he has been working towards for almost four years now.

I also couldn’t help but feel a pang of confusion and disbelief. He can do all of this, but he may not be able to navigate dinner tonight.

It’s something I don’t think we talk about as much as we should. A child on the autism spectrum may master outrageously difficult things, such as building a computer without ever being taught how to do so. But it can be the basics that are difficult. Eating. Sleeping. Drinking water. Shopping. Taking medicines. Showering. Getting dressed. Playing. These areas of my son’s life can be the most complicated.

Eating and sleeping are basic life requirements, and yet they can be the most challenging aspects of my son’s life. “I’m hungry, but I can’t eat.” “I’m tired, but I can’t sleep.” “I want to go to the store and look at air fresheners, but I can’t be in the store.” Some days he can’t eat the first breakfast I cook because the texture bothers him, or sit at the table because his brother is tapping his feet on the floor, or handle a shower because it’s too much for him after a long day. He has learned to better communicate what is happening. I feel so grateful at how adept my son has become at communicating his needs.

Our life necessarily looks different. My son spends more time learning the basics, like eating and hygiene, than he does with subjects like science and math. And I am 100 percent OK with it.

What makes it complicated is the rest of the world not understanding, assuming he is “spoiled,” and questioning why I allow him to make his own decisions instead of demanding obedience. Doctors, other kids, and even his own brother don’t understand why he can’t just do these things.

He doesn’t have an answer. But I have an answer.

Everyone is different. Everyone has strengths and weaknesses. My son is stronger in his strengths than any 13-year-old I know. He also works harder, every single day, on the things that are tough for him. Sometimes the basics are the most difficult. Sometimes “simple,” isn’t simple. Sometimes development looks wildly different for one child versus another. And sometimes, we just have to proceed at the pace that is right for our children.

I don’t think the basics will ever be easy for my son. But I have seen enough progress to know this:

He will figure out how to best approach eating, sleeping and shopping. Until then, I will help him. I’m his mom. It’s my job, and one I feel lucky to have.

Shawna and her son, standing outside, view from the back. Her son has purple hair.
Shawna and her son.

Follow this journey on Not the Former Things.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I've Learned About Supporting My Grandson With Autism

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I pen this as an observer; I claim no expertise. I’ve never parented a child with autism spectrum disorder (ASD). I don’t go to therapy appointments, I don’t visit the neurologist or the behavioral specialist and I don’t deal with the inevitable daily challenges that a child with a neurological disorder may face.

However, I love a child with ASD. He’s my grandson.

I also don’t have Type 1 diabetes. I don’t prick my finger eight or more times each day to test blood sugar. I don’t position a spring-loaded device on my belly and push the button to insert a cannula to deliver insulin — to literally keep me alive. I’ve never woken from a diabetic coma, surrounded by paramedics and feeling rotten. I’ve never been hospitalized with diabetic ketoacidosis.

But I love a man who does, who has. He’s my hubby.

It’s been a journey. So here I am, 20 years after his diagnosis, still clumsily discovering how to be an encourager and advocate while maintaining my primary role as wife and lover. I avoid being the “diabetes police,” but I’ve said the wrong thing and responded in the worst way when he most needed compassion.

I cannot express the highs and lows (no pun intended) of dealing with diabetes. You can do the same things day in and day out and get wildly different results. Just last Saturday, the excitement of finishing a 5K was clouded within minutes when his blood sugar reading was high. There is big potential damage to vital organs from exercising with high blood glucose. But there are so many factors outside of his control, and virtually none within mine. There were many emotions that surged, from aggravation to fear, but the truth is that you just deal with the present. Adjust, course-correct where possible, and keep living life with this person I love with all of my heart. I wouldn’t want it any other way.

ASD can make everyday things hard for our boy. He has difficulty with waiting. Changes in routine are upsetting; he doesn’t like to share certain toys and he doesn’t usually show affection. Many times he’d rather play alone than with his siblings. Some days are just hard.

He’s learning and developing skills to cope through therapy and the efforts of his parents. They are his champions.

Watching him run and play outside makes my heart soar. He’s brilliant, this little guy. He loves books — he will sit with anyone who is willing to read. When he is having a good day, he is delightful. His joy is pure and wild and unfiltered. I have high hopes for this boy, confident that he will reach his potential because he is surrounded by people committed to building a strong foundation.

So here I am, clumsily discovering how to be an encourager and advocate, while maintaining my role as his grandma and my daughter’s mom. I am not an expert on ASD, and I’ve said and done the wrong thing. I’ve responded with impatience when I should have been compassionate. I’ve already made some monumental blunders with him. Without a doubt, I’ve annoyed his parents by saying the wrong thing or reacting inappropriately to his behavior. I’ve misunderstood and been misunderstood because I didn’t know enough about his challenges. We’ve learned to extend grace to him and each other.

I don’t know what our sweet little grandson’s experience will be. I’ve read lots about autism, pretty much everything I can get my hands on; I listen and ask questions of his parents. And what I’ve learned is to expect the unexpected. The things that worked yesterday (or the last time that we were together) don’t always work today. Regression can occur and expectations have to be adjusted. But at the end of every day, the little boy who lies down and sings himself to sleep is, I believe, a gift from God, fearfully and wonderfully created.

May we ever grow in compassion and joy for every life.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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5 Things I Want Everyone to Know for Autism Awareness Month

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Hi Everyone! This is Andrew Levin, Production Intern at The Mighty. In honor of Autism Awareness Month, here are 5 things I want everyone to know about autism.

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Jim Lichtenstein's Act of Kindness for My Son With Autism Made Me Want to Cry

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The Henry Ford Museum/Greenfield Village complex in Dearborn, Michigan, has been a large part of the growth of my son with autism. When CBS started producing a show there, my son and I were excited. I started stalking @cbsinnovationtv on Instagram. We enjoyed looking at behind-the-scenes photos on Instagram and watching the show. Perhaps someday we’d get a chance to see them record live.

Well, last July the crew spent time taping at the complex, so off we went on an adventure to stalk, I mean watch, them tape. After some paparazzi-like behavior, we finally found a spot to watch the recording. It was fun, but we couldn’t get close enough to hear well, and we eventually had to go. I left them a comment on Instagram that we got to see them but couldn’t stay long enough to introduce ourselves. 

CBS producer Jim Lichtenstein replied that they’d be back in September and to look for him and say hi. You bet your bottom dollar I’d do just that! In September I watched the Instagram account to see when Innovation Nation came back to town. This time we found the crew more quickly. In the midst of historical cars, I walked up to Jim Lichtenstein with my boys and introduced myself. He recognized me from Instagram. Then the magic began.

First he walked us over and introduced us to Mo Racca, the host. He snapped a picture for us. Then Mo and Jim took time to talk with my son. I tried to contain my excitement for him. What a gift to give a child who has social challenges!

When it was time to start taping again, we dutifully moved over to watch with other spectators. Imagine my surprise when Jim walked over to us, inviting us to stand with him behind the recording table. My son the gadget guy got to watch from behind the monitors and see all the equipment being used.

standing behind the tech table with Jim Lichtenstein

Then Jim started explaining to him how things worked. He took out his producer’s notebook and showed my Aspie the scripts, telling him what happens, etc. I was so touched. The tech-loving boy didn’t seem to be paying attention, but I knew he was listening. I leaned over and explained, “My son has Asperger’s syndrome, which is on the autism spectrum. It may seem like he’s not listening to you, but he is.” Jim didn’t bat an eyelash.

This autism mom almost cried when Jim offered his headphones to my 9-year-old. That is not something you see every day. He allowed my son to listen in, to stand there like one of the crew members, to experience the making of a show he enjoyed watching on TV. 

wearing headphones with Jim Lichtenstein

When the taping session was complete, we followed the crew to the next spot. Unfortunately, it takes much longer than you realize to set up a scene for taping and we had to leave before they started. We walked over to thank Jim and say our goodbyes. Jim opened his notebook, dug out a special laminated crew card, and presented it to my son for a souvenir. I might have fallen into a puddle of tears if we hadn’t been in public. My son walked out of that museum a happy kid. 

son holding crew card from Jim Lichtenstein

I must admit, when I see those “CBS Cares” commercials on TV, I respond rather cynically inside with, “Yeah right. What a bunch of political mumbo jumbo.” But on that day in the Henry Ford Museum, one CBS producer really did care. He reached out to my son and gave him an experience I doubt he’ll ever forget. I know I won’t forget. Thank you, Jim Lichtenstein!

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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