No Finish Line: Supporting My Adult Child with Severe Developmental Disabilities
When my daughter was younger, I had this notion that parents who had adult children with developmental disabilities living in a group home or other setting had crossed some kind of finish line, as if their intensive effort of many long years had resulted in success. They were able to safely hand off the day-to-day support of their children to others who were unimpeded by aging bodies and exhausted minds. Perhaps for some parents, this is true. But I don’t think it is for most of the parents of children with severe developmental disabilities that I know. It definitely isn’t for me. I’m afraid that there may be no such thing as a finish line, or a time that making sure that Lauren’s intense and diverse needs are met, won’t be primarily up to me.
When people I haven’t seen for awhile inquire about my daughter, I say, “Lauren’s doing well! She’s living on her own now.” Of course, then I have to explain that “living on her own” means that someone is with Lauren 24/7 to support and care for her. I usually don’t include the other fact that “living on her own” requires my constant oversight and management of every facet of her life. Lauren may no longer live under the same roof as I, but she still depends on my constant presence in her life. Since Lauren has a severe intellectual disability, as well as severe physical disabilities, she depends on someone to know her well enough and care about her enough to make decisions, guide her choices, and protect her health and well being. That would be me.
Eight years ago when I was making this adult living concept a reality for Lauren (her own rented home with 24/7 staffing), I mistakenly believed that this distance between us—her in one house, me in another—would also create space between the worries and anxiety that were a constant presence when she was home. It has not. I still worry about all of the same things, plus now I feel constantly in a no man’s land in the war between my need to support her in an independent adult life, and my need to have her within easy reach and under my watchful eye. Sometimes I think it would be less stressful to just bring her back home, eliminate our “separateness”. Then I would be able to monitor every moment of her life. I would be able to touch her, to look into her eyes, to ponder the subtle intonations of her vocalizations. But I cannot give in to that because it would be selfish. Lauren does not live in a home of her own because I do not want her living in mine. No, Lauren lives in a home of her own because she needs to build an adult life in which she can survive without me. This arrangement is the first step. It’s not perfect because I am still so heavily involved in her life, providing support I won’t be here forever to provide. But this is a good first step, because while I’m still involved in the days of her life, I am not involved in the minutes.
Those minutes are under the watchful care and support of the wonderful Direct Support Professionals (DSPs) that Lauren has in her life. They know her well and provide consistent and diligent care, but no DSP will ever know her as well as I do. She may have five other people facilitating those moments in her days, but I have the final responsibility of figuring out if a question or concern is “something” or nothing. A vocalization could mean anything from I’m in pain to I don’t like that song. A pale face could mean I don’t feel well, I’m tired, or It’s too warm in here. A refusal to eat could mean I’m feeling nauseous, I don’t like that sandwich, or I want the television on. The possibilities of Lauren’s subtle cues are endless. When a DSP can’t figure out what’s going on with Lauren, it’s up to me to figure it out.....or to make an educated guess. Lauren’s care places a lot of responsibility on the shoulders of the DSPs, but I still hold most of the clues to the messages hidden in Lauren's wordless existence. And so, though even I am not always right, the final judgment on everything rests with me.
Lauren recently had a little cough. It wasn’t getting better. But, it wasn’t getting worse either....until suddenly, on a Sunday of course....it started to sound different. I jumped in the car at eight o’clock at night, because in speaking to two different DSPs who had just changed shifts, I was getting two differing reports on Lauren’s condition. Lauren was definitely worse, but call-the-doctor-in-the-morning worse not a rush-to-the-ER worse. I ended up staying through the night to monitor her, to try to make her comfortable while the cough was interrupting her sleep. Lauren doesn’t get sick all that often. Her DSPs just don’t have as much experience as I do with helping her weather an illness.
Lauren’s doctor—who sees her for maybe fifteen minutes a couple of times a year—does not know Lauren well enough to “read” her in anyway. And, whether the doctor is saying, “Take a deep breath” or “Open your mouth”, I have to explain that Lauren doesn’t understand her instructions and help her get the result she needs. Since the doctor is looking at an individual who is so atypical of the majority of her patients, it’s up to me to decipher for her what is typically atypical for Lauren and what is not. And, since Lauren cannot tell us what she is feeling, it’s up to me to guess and relate that to the doctor. She must then consider my input with her exam, made with the limited cooperation of Lauren, in order to come up with a diagnosis. It’s not the ideal scenario.
The doctor prescribed an antibiotic for an upper respiratory infection and an antihistamine to control the mucous. The antihistamine allowed Lauren to have the first decent night’s sleep in awhile, but left her too groggy to eat the next day which she primarily slept through. The antihistamine had to be discontinued. I’m hoping the antibiotic kicks in soon, because she’s still not herself and I can’t stop worrying that I’m missing something until she is. So while we wait for this wonder of modern medicine to hopefully start working, I’m on the phone, talking and texting, with the DSPs, issuing instructions, and trying to walk the fine line between trusting those very able DSPs to care for Lauren and wanting to do it myself. Yesterday, when I stopped in and sat for an hour next to a clearly fatigued and pale Lauren, the DSP said to me, “You really have to stop staring at her.” And, she was right. I was unnecessarily focused on Lauren’s thin form as if some nuance of her breathing or the distinct shade of her pale cheek held some critical message I couldn’t miss. I need to give her the time she needs to rest and recuperate, but I can’t stop worrying that she’s actually not getting better......and I’m not seeing it.
I talk about that hypervigilance in my recent post on PTSD in parents of children with developmental disabilities. There are no days that I do not wait for the phone to ring or wonder why the phone hasn’t rung. It’s just the reality of this arrangement. I am in charge of guiding Lauren’s experience of life, her ability to travel safely through her days. Normally, I physically visit her two or three times a week. There are often times when I feel that she doesn’t seem quite right, but I can’t figure out why. So I dwell on it for the rest of the day weighing possibilities, fearing possibilities....until I can check on her again. Hopefully, I find out that she was fine after I left. What she needed was for me to leave. Sometime she makes that quite clear by pushing me away when I lean down to plant a smooch on her cheek. I’m interrupting her day. Thankfully, there are other days when all is well, and I sit on her couch with her as she leans into me resting her head against mine. It’s a “mom moment” I live for and the sun shines the rest of the day, regardless of the actual weather.
I can’t believe it’s been almost eight years that Lauren has been on her own. I expected it would get easier, more mundane at some point. It has not. Lauren really loves this life on her own. She doesn’t even want to come home to visit anymore. It’s as if my home is a “been there, done that” place in her life that she doesn’t need to revisit. It kind of hurts. But I’m also really proud of her. This bit of independence shows a maturity of which I didn’t think she was capable. But, there is always something tearing at the fragile web of stability that is Lauren’s life. If it is not a problem directly with Lauren, it’s a problem with staffing, funding, new rules, or old equipment. Lauren’s well being is not just dependent on her physical care, I am also responsible for making all of the ancillary details of Lauren living on her own coordinate to support her life – finances, staffing, housing, transportation, etc.
So when I share my news with people and they react with “Oh, that’s great!” I agree, at least in theory. I don’t think they can understand the investment of my time and knowledge that it takes for Lauren to successfully live on her own. I don’t think they will grasp how very mixed my emotions are about this situation. As I wrote in Special Needs, “....I feel selfish that I am not with her every moment to ease her way through this challenged life that I have given her. Is it my responsibility to prepare her to live without me? Or, is it my responsibility to dedicate my every waking, and sleeping, moment to personally assuring her comfort and safety? Somehow, it’s both and that’s impossible. I know that. And still, I feel guilty.”
So I have loosened my grasp on the minutes of Lauren’s life, but as of yet, there is no one who can be “me” when I have ceased to be, and there is no entity within the system of supports prepared or designated to become me when needed. This finish line that I thought was something that parents reached is in reality something their children reach—the ability to live independently of their parents. It’s a finish line that Lauren depends on me to help her reach, and that is definitely an added worry, because I don’t see it anywhere on our horizon.
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is the author of Special Needs: A Daughter's Disability, A Mother's Mission. Gail is an accomplished advocate and writer in the field of developmental disabilities and Mom to Lauren, a young woman endeavoring to lead her best life despite severe challenges.