Special Needs Children grow up into Special Needs Adults

(LIFE WITH VICTOR—A post for Siblings of Special Needs Adults. The joys and challenges Siblings take on after our Parents are gone. In Three Parts: The Hard Stuff, The Good Stuff, The God Stuff)

The Hard Stuff (Part One)

We heard coughing from my brother Victor’s room. I didn’t think it was anything but I knew he had been eating the special popcorn we had brought him from our recent Chicago trip. It was the end of the New Orleans Saints game. They had just lost to the Falcons 26-24. My brother is a MAJOR New Orleans Saints Fan.

Keith got up to go check and I heard him yell “VICTOR!!” Then “Janet come in here!!” When I got there, Victor was slumped over in his chair, unresponsive. I thought maybe he had choked on the popcorn.

We sat him up but he was still unresponsive.

My husband was trying to make sure he hadn’t choked,

I was calling 911.

It was another seizure, the second in the weeks since we had changed some of his medication. The EMTs insisted we go to the hospital as he was sweating profusely. Once we were there, he began to “wake up” and recognize me. He recovered much quicker this time and we were not at the hospital long after they determined it was indeed another seizure.

Victor and Me at Mardi Gras

Victor is the Second Child to my parents born twelve years after my older sister. First born son, Pride and Joy of my Dad. But Victor has disabilities and cannot live by himself. Our Parents are gone. He was left with only siblings to care fore him and now it’s me. This is the story of how we came together, how we survive and how we move forward.

Victors early years

At four months of age, Victor began having seizures and after many tests, it was discovered that he was born without his Corpus Collosum. That is the thick bundle of nerve fibers that connect the left and right hemispheres of the brain. Results and complications of missing your corpus Collosum vary. One result of is seizures, so ultimately they listed his diagnosis as Epilepsy. I am nineteen months younger than Victor and we have a sister thirteen months younger than me. 

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Some memories of growing up with Victor.

1. His seizures were so terrible at times, I thought he was going to die. My little sister and I would be on our knees in our room praying—Please God don’t let him die.

2. He would chase me around the yard and try pulling my ponytail hair. He still mentions that sometimes when he gets angry with me.

3. We use to play baseball in the front yard and I can still see Victor wildly running the bases. He loves his sports.

4. He was enrolled in a special school when he was eight. The Louisiana School for Spastic Children. (YES, that was its name. It was the 1960s). He lived there for a while and then when we were older, he came home on weekends. I remember going to special parties while he was there and being surrounded by other children with various disabilities ranging from severe cerebral palsy to more mild forms of disability like Victors.

5. In the summers, he went to a camp for special needs children sponsored by the Lions Club of Louisiana. We would go for family night and I thought what fun he must have had this week at camp. I kind of wished I could go too.

6. Victor has always kept notebooks of sports stats. He was and still is good with stats and numbers. It doesn’t matter what sport it is, he loves them all!

7. When I started to drive, it was my responsibility to pick him up on Friday afternoons. I still can see him walking down the corridor to meet me at the car.

   

   A page from Victor Stats Notebook

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He finished school and then worked a couple years in a sheltered workshop. My Dad had an Issue with something, so Victor was removed from that program. From that point on Victor lived at home watching TV and working on puzzle books, which he loved.  As technology developed, Victor received a computer and he loved playing his games while he watched TV. When Nintendo came out, he was given one of those. 

I really haven’t lived with Victor for a lot of his life. By the time he finished school and started living at home, I had gone to college. 

My Dad died when we were in our thirties leaving my mom to care for Victor alone. My sisters and I lived in different cities across the state. My oldest sister was an empty nester and my younger sister and I were both busy with our growing boys. Victor has behavioral issues because he doesn’t know how to reason or process disappointments, much like young children. Eventually as my mom aged, she became afraid he would hurt her. At times, he would grab her arm, which left bruises and she tried diffusing his tantrums by promising to take him out to eat, which he loves to do. He would get angry, mom would say—we are not going out to eat, he would say I’m sorry, then they would go out to eat anyway.

Manipulation was the discipline form. Eventually it was decided that my older sister and brother in law could better handle Victors care. They both worked, so Victor was home during the day by himself. His seizures were controlled by his medication and if there was one, it was very minor. By this time he was on several seizure medications and a medication for his mood swings. They were able to take Victor out more often. He enjoyed going to college football games in their town and they took him on little trips. Then, our mom died in 2008 and my sister assumed all his care, including monitoring his Social Security, Medicaid and Medicare. Sometimes, I would go pick him up and he would come stay with our family for a couple weeks. .

In 2021, my husband and I sold our house and took off on a big adventure of travel. The plan was to travel several months, spending time in Seattle with our middle son and then back to the south to be close to our oldest and his fiance while they planned their wedding. Then we hoped to move to Texas where we had lived at one time. We were retired, carefree and adventurous.

Plans Fail

My brother in law died suddenly leaving my older sister unprepared and devastated. They had both been retired for many years and my sister was very dependent on her husband. So much so that she had quit driving. They were very private people and unfortunately did not plan for their deaths. I had tried to talk with them about future provisions for Victor but we were often told it was none of our business. We didn’t press it because Victor seemed to be well taken care of and healthy. 

Then the bottom began to drop out. 

There was no will. We tried to help, but my sister was insistent that she could take care of things. I made a few phone calls to get assistance from other sources but my sister refused. She would not admit to her depression and there was so much paperwork to fill out with her husband's retirement benefits. she resented anyone looking into her business. Eventually, her daughters were able to step in, but the tasks were overwhelming because there had been no plan. My sister's health continued to decline and the closest family members, her daughters, were two hours away which left Victor vulnerable should something happen to her.

In winter of 2022 she was admitted to the hospital and my younger sister and I began to take some responsibility for Victor. He would stay with us off and on, even though we lived five hours away. My older sister would be in and out of the hospital until she died this past May.

Taking on the Responsibilty

I’ve met a couple of families that have taken on the responsibility of caring for special needs siblings, so I know that I am not alone, But it is not an easy task. Parents of Special needs children know this all to well and I certainly do not dismiss the struggles that the Parents of Special Needs children go through in learning their Particular needs and what is available.  It is all overwhelming.  

As siblings, it is so important to work together and communicate on care. There needs to be open honest discussions on how money is spent and how their medical needs are met. My sister was lonely, she was ill, she was struggling financially but refused to communicate and cooperate with us. She lived five hours away from us, so when she would have a medical crisis there was no one close to get Victor. Her daughters lived two hours away and they had families. Caring for loved ones from miles away is very difficult and when they refuse to move - and it is not an option to move closer - it weighs heavy on those who are trying to help. Not only did my sister need care herself, Victor was vulnerable if something would happen to her.

Which it did

In summer of 2022, we had taken Victor back to my older sister’s as she seemed to be improving. My husband and I were on another extensive trip to Washington State where our middle son lived. We enjoyed spending the hottest parts of the summer away from south Louisiana and we love the Pacific Northwest.

My cell phone began to ring. I saw that it was Victor calling.

When I answered, he began telling me that Carol had become really sick and they were at the Doctor's office— they had arrived by medical transportation for a checkup because my sister did not drive.

The Doctor was transporting her to the hospital via ambulance.

There was no one to get Victor so he was going there with her.

I was finally able to talk with one of the nurses. My nieces were two hours away and could not leave until they got off work. My younger sister was 5 hours away. I had to make phone calls and scramble around to find someone to get Victor. A saint of a young man who lived about one and half hours away graciously drove to pick Victor up and meet my sister half way.

It is very hard to witness the decline of our loved ones and it is so hard to lose your independence. I, my husband and my younger sister were suddenly thrown into a situation we did not fully understand. I had to make some hard decisions. I have been told that I was mean to my older sister during this process.

I admit I was.

  I took harsh steps in gaining legal guardianship over Victor and permanently removing him from my sister's care. In one conversation my older sister told me I was being cruel, that she was lonesome and needed a companion. I said some hurtful things to her because I was angry and she was angry at me for taking her brother away when she was still grieving the loss of her husband. There are times we have to make heartbreaking decisions and this was one.

She would text Victor and tell him to come home, that she missed him. He would tell me she needed him. But Victor did enjoy living with us. The reality, I believe, was that she wanted Victor to replace her husband and to take up that void that she was missing. But Victor could not take care of her, she needed to take care of him. Planning for aging is a common problem. My sister loved Victor. She probably handled his mood swings much better than me or my younger sister. It was a complicated and trying time. We eventually repaired some of the broken relationship and I was with her when she died. But still, I have not fully healed from the anger.

Emotional Whirling

When we were small children, my Mom and Dad took us to the [State] Fair. The three of us children got onto the Ferris Wheel ride. As it started going up, I started screaming. I was afraid Victor was going to have a seizure. They had it stop the ride to get me off. This is where I am now. At the Fair. Trapped in a ride. Emotions come and go and swirl around in my head, like those multi-pivot carnival rides that strap you into cages then turn and twist around and upside down as the ride itself spins round and round.

Photo by Eduardo Soares on Unsplash

Loss, grief, anger, envy, joy, anger, dancing, mourning, laughter, anger, Loss, grief, jealousy, selfishness, anger, fear, guilt, repeat, over and over

When your lifestyle is suddenly flipped upside down and everything you thought you were going to do needs to be rethought, it brings on all these emotions. But mainly anger, resentment, confusion and fear. 

Do I share my emotions? It’s so complicated!

SHARING IS A FORM OF GRIEF.

But even as you grieve what you have lost, you feel guilty that you feel that way. You feel selfish. You feel “UnChristian” He is my brother and he needs care despite my selfish desires and broken plans. And I do love him. He is quite special indeed.

If you are the parent of a special needs child you relate to what I am saying and hopefully it causes you to ponder the future of your own special needs child. Im sure most people these days have a plan. As siblings, of course we love our special needs siblings. But there remains a burden on those of us left to care.

Whenever I listen to the song “He ain’t heavy he’s my brother,” I swell up in tears. He is my brother and I love him and he needs care.  One line in particular sticks with me

The road is long with many a winding turn that leads to who Knows where, who knows where. But I’m Strong Strong enough to carry him. He ain’t heavy, He’s my brother. 

I believe most of us who have the responsibility of Caring for our special needs siblings will echo that. But it is not without hardship and lots of sacrifice—not least by our spouses who help take on the burden.

And if you would like to listen to the Hollie’s sing He Ain’t Heavy—Here’s the link. I’m weeping now as I listen again and also realizing that there are days I can’t feel all the words in the lyrics but in deep soul searching ways, they are true for me.

Decisions, Decisions

I asked my mom one time how she handled having to care for Victor's needs.  She said.., “Well, I never thought about it.  I just do it”.

Before that trip to the hospital, when we thought he was choking on popcorn, his new neurologist thought his seizure medicine was outdated treatment and said we should change some medicines. One was causing Osteoporosis. I had no one but my younger sister to talk to and neither of us really knew what to do. We made a few changes but as his body adjusts he has had four seizures in two months and two sent us to the hospital. He hadn’t a major seizure for over 20 years. Did I make a wrong choice?

I wonder if it is different for the parents than it is for the siblings. That is one reason why I wanted to write this story:

For the Siblings.

There is a huge burden to bear as siblings of special needs people. Most of us bear it with joy even in the struggles.  I wish I had been more informed.  But then again, my sister never felt the need and my mom had done the best she knew how in setting up a plan for Victor.  My sister and her husband had become very content to just sit at home all day watching TV.  But my husband and I are very different people with a very active lifestyle.  We love to travel, we love outdoor activities.  Our sons are scattered across the US.  One in Texas, One in Washington State and the other close to us.  We lost our freedom to pick up and go and visit them whenever we wanted

When Victor came to live with us we had to transfer all his medical records to new doctors in our area.  I had to find a neurologist. He takes several different medicines for his seizures and other medical issues.  I now needed to keep up with medicaid renewals.  We missed last year and that was a huge ordeal in getting that straightened out.  I was an emotional wreck for a while.  I spent hours on the phone trying to get information and understand the system.  I knew Victor could  possibly outlive all of us and I was trying to understand  how to make plans for his care should that happen.   I just started googling special needs adult care. I had  no idea what Waivers were or all the benefits available to disabled adults.  My sister never saw the need for any outside help for Victor.  She thought that being in his room all day was fine for him. I had no idea what I was doing. [I still don’t]

Victor has mood swings.  He can be happy one minute and then if something doesn’t go his way he is yelling and pitching a fit.  One day he waved a belt at me.  Sometimes his anger comes when his routine has been disrupted and he can’t do what he wants to do or when his favorite sports team loses—I know normal grown men can have the same problem!!

Victor doesn’t travel well,  He likes to go places but then he wants to sit and play his games.  We love to hike and kayak and explore as we travel.  The only time Victor wants to be outside is if he is watching sports.  And we cannot leave him by himself in strange cities if we want to hike and explore.  I'm grateful my younger sister is only an hour away and she helps when we travel. The problem is that now that Victor is a part of a day community he loves, he does not like to miss it when we travel.  As I have talked with other caregivers and learned about available programs and care, I have not met anyone in our particular situation. But the people I have met have been very helpful as I learn how to navigate. Most caregivers and parents here seem well informed.  The paperwork is overwhelming and I have a college degree. I cannot imagine the difficulties that face impoverished families of special needs people.

Moving Forward

I realize that it could be so much worse.  Victor is very independent.  He can bathe, dress himself(though sometimes mismatched). He can prepare a sandwich, work a microwave etc. He cannot drive, He cannot use a stove, He cannot stay by himself overnight.  And now as his body adjusts we can’t leave him by himself at all. I wonder if he had had the resources then that are available now and my mom or my sister would have pursued them, would he be able to do some of these daily life skills.

Am I being selfish?

Am I sounding arrogant and uncaring?

Yes, at times, I am.

For many years my generation was taught to keep quiet about our struggles, either we were ashamed or we didn’t think people cared.  

If we do not share our stories how can we find support and comfort in our times of struggle.  

“As a follower of Jesus, what I have to offer is first of all my own vulnerability. My own weakness, my own brokenness, my own wounds. My wounds can only be a source of healing for others if I care for my wounds.”  Henri Nouwen

Two different Substackers I have read have written about this very struggle. The struggle of sharing our stories, talking about our grief and joy. Look up

Linda Stoll

Porch#155 and

S Tomlinson

Hope is in The Shared Stories

Hope is in these shared stories. This is why I'm here.  Sharing my story.

This is the Hard Stuff, But There is Good Stuff.

Look for the next Installments;

The Good Stuff, and The God Stuff

Victor and Me when we were really young and cute

Thanks for taking time to read the struggles of a sibling trying her best for her brother