What Is The Truth?

BY TAMMY SHORT

In the first story Tammy wrote for Special Needs Living, she shared her experiences with Indiana’s Medicaid waiver program and how it fails our most vulnerable citizens—children and adults living with severe intellectual and developmental disabilities and hard-to-manage behaviors. In this story, she shares the raw truth of what it has been like for her to raise a daughter with severe autism. What is the Truth? By Tammy Short I’ll tell you my truth. it’s not pretty. It’s not sweet. It’s not promising. It’s almost hopeless. You may say nothing’s hopeless, but you’ve never walked in my shoes.

This is my life. This is the life I was given. I prayed for another baby. I’d already lost my first pregnancy and I begged God to give me another child. I didn’t care if it was disabled and I still don’t. All I wanted was to be a mother. I wanted to prove to the world that I could love and be loved. I wanted to prove that I was a “real woman” by having a child. Then she came along—my beautiful, curlyhaired, sweet daughter.

But as soon as she was placed in my arms, I knew something was wrong. I have spent the last 21 1/2 years fighting, begging, pleading, researching, advocating, planning, digging and begging God, doctors, specialists and other families to help me find a way to help LeeAnn overcome the struggles of severe autism. I have had failed marriages and relationships. I had to quit jobs that I loved and I lost who I was as a person. I don’t laugh anymore. I’m not depressed necessarily, I just don’t find anything funny anymore. When I do laugh, it’s more of a kneejerk reaction. All I do is stress and react every single day. I’m on auto pilot. Everything has to be regimented, all the way down to when to go to the bathroom. Taking care of another human being that’s more important to me than anything on the planet because she is so vulnerable takes precedence over anything else. With her vulnerability comes huge responsibility and I lost myself in that process.

If you have walked in my shoes, then you know exactly what I’m talking about and you probably feel just like I do. I have hopes and wants and dreams outside of what I do every single day to care for my daughter. I fantasize about having a separate life somewhere else. That sounds so messed up, but it’s the brutal truth.

Some mornings I’ve awakened and wondered is it even worth it? All that I do--the bathing, brushing and flossing her teeth, putting on the perfume, making sure she’s presentable before she leaves the house—is it really worth it? Is it going to matter in the end? Because eventually I’m going to die and everything I’ve done for her all these years, all the effort I put into her will be futile because she’ll be at a group home or supported living center with people who won’t care about her like I do and she’ll never get that special loving treatment again. I’m probably just setting her up for ultimate failure.

The problem is, LeeAnn may be 21, but when I look at her I see my helpless little autistic daughter. I don’t see what you see. You see an obese, wild-haired adult who is dependent on other people for just about every aspect of her life. You see a whole lot of work and stress. I know I sound bitter, because I can’t understand why society isn’t more accepting and tolerant of differences. But I think my biggest problem is I’m exhausted, and nobody seems to understand that.

I still get ready every day. I still work. I take care of her and our household, but somehow, I’ve gotten lost in the mess of it all. I have few real friends anymore. We seldom have visitors and we can’t go visit others because it’s too unpredictable for LeeAnn. I don’t have anyone to talk to, not really talk to. I turn to social media because that’s where my group of people is. They’re my high school and college friends and most importantly, my family. I have a few coworkers that have become very close friends, but they’re spread out across the entire United States. I’m profoundly lonely. I’m lonely because I lost who I was. I was the class clown in high school. I loved to make people laugh. I wish I could still be like that, but I’ve completely lost my lightheartedness. I lost it because nothing is fun anymore. It’s all work.

I get two days every other week to recoup what I lost. Just two simple days. The first day I actually can relax because she’s with her dad and there’s no extra work to do. I’m just me for a day. I try to use those days to spend time with my stepdaughters and especially my grandchildren. God, how I love them. They give me so much joy. The problem is that as soon as that first day is over, the dread sets in because the next day I have to go pick her up. Don’t get me wrong, I want to pick her up, but the dread is still there because I know what’s coming. It’s back to the grind. It’s driving that hour and a half one-way to pick her up, only for her to be slightly agitated and on edge. For her to repeat multiple times the same sentences, questions and phrases and for me to smile and respond yes to give her the affirmation she desperately needs to soothe and comfort her fears and anxiety. It’s exhausting. Nobody ever sees it because I hide it. Nobody ever asks about it. Nobody ever says “Are you OK? How are you? Is there anything I can do to help you?” No one ever says “Here, take yourself out, go get a massage, or take the day off. I’m here to care for LeeAnn, and I insist.”

One thing that ignites my anger is when somebody who knows nothing about what really goes on in my world tells me how I should do things, or how I could make things better for myself. How dare people think that they have some kind of insight into my life when they have never walked a moment in my shoes? They may have seen my kid for a few hours at a family gathering or while visiting my home. What I can assure them is those few hours they saw my kid were the best hours of her day, if not her week, because she was thrilled to have company and was on her best behavior.

It looks easy to a lot of people because I make it look easy. I don’t post the temper tantrums. I don’t speak about her behaviors that I intercept all day long. I don’t speak of the fights between my husband and me because we’re always on edge. We’re exhausted so we’re always at each other. I don’t talk about those things because nobody wants to hear it. I find it hysterical that some people really believe that families with severely disabled children have normal lives. They don’t!

And there’s more. Let’s talk about PTSD. My husband has it. I have it. Her siblings have it. We walk on eggshells. We never know what the next seconds are going to bring, but we love LeeAnn anyway and we go on about our day as if nothing’s wrong. We carry that weight and it is always affecting our lives. We see her for the little girl that she is, laying on the couch and watching cartoons that are geared toward preschoolers. We see the little smiles and giggles, the light in her eyes when she gets a new toy. We hear her plan out things that are going to happen at Thanksgiving and Christmas. My husband works all day and then helps pick up the pieces around the house that I can’t get picked up. Our younger daughter helps when she can but she needs to build her own life because she lived her whole childhood around her sister. As for me, I don’t know that I’m even living at all. I feel like I’m just existing to care for another human being that desperately needs me as much as I need her. It’s bittersweet.

The one thing that is so rewarding is watching LeeAnn grow up and become a woman, knowing that she is healthy and that sometimes she’s happy. That brings me joy beyond imagination. But I am getting older. My mind is tired and my body hurts. I have arthritis, carpal tunnel syndrome and tennis elbow. I have lesions on my brain for which no cause has been found. I wonder what the future holds for me, but more so, what does it hold for her? What will happen to my precious child when I die or can no longer care for her? These are the thoughts that run through my mind day and night. Even though I know that God is in control I cannot help but be afraid for my child. I cannot help but worry about the “what-if‘s.”

So if you know a family that has a child with a disability, please be considerate enough to realize that they’re going through struggles that you don’t see. You might even want to really get to know that child and spend time with them in the presence of the family. Become the kind of friend or neighbor that they could rely on for a few hours to take care of their child so they can get away for a bite to eat or just take some time to breathe! Do you know what a gift you would give that family? And if you see stories about families like mine, please don’t judge us. These stories are the raw truth that most of us just don’t verbalize because we feel embarrassed or are afraid of ridicule from others. I’m not afraid and I’m not embarrassed, because I’m a great mom but I’m a tired mom.

A few months ago, Tammy received a call that would change her life. LeeAnn was accepted into a supported residential living program. The first month was rocky, as the staff learned her medication schedule and her daily needs. Since then, the adjustment has been remarkably smooth. Tammy is cautiously optimistic; happy that her daughter is starting a new phase of her adult life, but also painfully aware that the situation could change at a moment’s notice.