Cerebral Palsy Means No Empty Nest

by jphilo | Apr 16, 2020 | Different Dream, Self-Care and Stress, Special Needs Parenting

Cerebral Palsy Means No Empty Nest

Cerebral palsy means no empty nest for parents like Trish Shaeffer, today’s guest blogger. March was Cerebral Palsy Awareness Month, which led to some soul-searching for Trish.

Cerebral Palsy Awareness Month led me to a realization that is in many of our minds as caregivers and parents. Cerebral palsy means no empty nest, a reality that worries and scares us to the core somedays. A reality we sometimes face when we look at our child Alex. I wanted to be honest and and open book and share my thoughts about what I personally deal with.

I see my oldest son being accepted into dental school courses. Alex’s twin became class president and is working on his violin solos. Watching them, I am reminded that cerebral palsy means no empty nest for us.

Cerebral palsy comes in many forms. For Alex it’s severe spastic quad cerebral palsy. This means his body is fully affected and he is in a wheelchair. He also has epilepsy and an intellectual disability. Walking and standing are very hard for him and he needs someone to hold on to him when he uses his walker for short transfers.

He cannot do many simple tasks that we take for granted. Such as taking a bath, or brushing his teeth. Some days he has seizures. And he has a baclofen pump in his body that has to be refiled every few months. He has a lot of medical conditions, such as asthma and heart issues, that need to constantly be monitored.

He also has trouble writing and reading. Even talking sometimes is a challenge. A lot of times, he can not even communicate when he hurts or is ill. Its sometimes a guessing game.

All this comes with the sad reality that Alex may never be fully independent and on his own. We hope that he will be. We want nothing more than him to be out on his own. We want him to be happy.

But a crushing reality stares us down everyday. While our other two children grow older and more independent, we are left with the nagging thought of Alex always needing us.

He can do some things on his own and in his own way. Like dressing himself and wheeling himself around. But, there are many things Alex may not be able to do. Like balance a checkbook, drive, or cook. Someone has to lift him and help him transfer in and out of things such as a car and his chair. He will probably always need someone there at all times to help him, whether it’s us or a nurse. So we talk often about how we will care for Alex in the future and set him up in life.

Cerebral palsy means no empty nest, but not all is negative.

I’ll always have a buddy and partner in crime. We plan to get an RV and travel with Alex all over the United States once our other two are grown. We are setting up funding so Alex will get the help and care he needs once he is 18.

We also have a tight-knit community, with people just like Alex to guide us into the future. To talk to. To share our stories with.

And we have his two brothers that care for and love Alex. They enjoy helping him with whatever he needs. For ten years Alex has been working on skills in therapy, at school, and at home to become more independent. Such as using an iPad to write, learning to snap and zip his jacket, using adaptive equipment such as an auto access seat to get out of his handicap van and transfer to his wheelchair, using a stair lift to get himself up and down stairs, and so much more.

We choose to focus on our future RV travels when we get sad or defeated when reality comes knocking. We focus on the positive steps Alex is taking to be come more independent.

Because it’s all about perception.

Some days are harder than others. We don’t know what the future holds. But we do know that Alex is a fighter, and he has a fire in his soul.

We will be his caregivers, cheerleaders, and biggest supporters. Despite not being empty nesters. Despite the challenges he faces. ?

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Trish Shaeffer is the mom of 3 active boys with special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Schaeffer.

Author Jolene Philo

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My Child Is Different, but We Have More in Common Than You Think

My child is different, says guest blogger Amy Felix, and yet. And yet, Amy knows that parents of typical kids and parents of kids with special needs have much in common. That commonality, she also believes, is what will help us raise a new generation of compassionate and kind adults.

When she was younger, you thought it was cute. The way she jumped up and down excitedly and repeated everything I said. Her big, green eyes and sweet, round angel face were the first things you’d notice when she entered the room. Her meltdowns were, in your mind, toddler tantrums and you gave me that “I’ve been there, too” smile to relieve the tension you could tell I was feeling. We were the same back then. You and I were just parents, and we understood each other without having to say a word.

Then she got older.

My little girl isn’t so little anymore and, suddenly, there’s a great divide. Now my child is different. You still give me that polite parent-to-parent smile when we enter the room, but when she gets excited or upset–we’re no longer the same, you and me.

Now you’re staring.

As she flaps her hands and talks loudly when she’s feeling joy, or paces back and forth with her hands over her ears when she’s upset. Her differences are becoming more and more obvious to you. You look from her to me, sizing me up. When you realize I’ve noticed it, you look away and avoid me. We no longer have an understanding, and it hurts.

We are strangers to one another.

I know that you have no way of knowing that my child has autism. Not all disabilities are visible. Just as I have no way of knowing anything about your child or your life. So, let’s take a step back for a moment, beyond just us. Beyond this situation we’re finding ourselves in.

Our children are here, at this birthday party or that playground, together.

They are taking it all in and, despite what so many articles may say, bullying is not just something that naturally develops as a part of childhood. Bullying starts with us. You and me. Moms and dads. Staring at one another in the presence of our children who, though they are busy eating cake or playing catch, are also busy watching. Those little sponges are absorbing every moment of uncomfortable silence between us. They haven’t treated each other differently yet. Our children haven’t begun to place each other on a scale of differing values.

But they will because my child is different.

Unless we change this judgmental way of interacting. Unless you look at my situation, unless I look at yours, and try to see the positive; try to embrace the differences as special and not strange. Unless we can be more like our children, our children will all-too-soon be more like us–the us that stands divided. The us that doesn’t take the time to try and understand. The us that we’d rather not acknowledge. The window of time is closing in which we still stand a chance to raise a generation of compassionate, open-minded people. So, from one parent to another, this is my plea.

My child is different. So is yours.

They all are, and that’s what makes them breathtakingly beautiful. Please, let’s not take that truth from them and twist it into the lie that they all need to fit into the same mold. If you see my child doing something that you don’t understand, ask me about it! I’d love to explain what makes her unique and I’d love to hear about what makes your child special, too.

As a parent, I’m different.

I have to be, because my children are not your children. Each of these little people have different personalities and need different things from us as moms and dads. Can we please leave the judgmental stares and awkward silence at the door and just support each other? We may be on very different parenting journeys, but we have one thing in common.

We love our children.

There’s nothing we wouldn’t do for them. When we’re faced with differences that feel too great and we don’t know how to relate to one another, let’s just start there. Chances are, we have more in common than you think.

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My name is Amy Felix. I’ve been married for 10 years to a guy who’s totally out of my league. I’m a homeschooling mom to 4 kids, ranging in age from 9 to 2 years. That’s really enough work on it’s own but, because I love it, I’m a photographer as well. And, in my spare time, I write. My faith is the driving force behind my special needs blog: Appointed To Hope. I’m a firm believer in being real, transparent, and using the gifts of this journey as a way to relate to others in their joy as well as their sorrow. To read more about my adventures in special needs parenting, visit my website at www.appointedtohope.com.