Mom of Special Needs Adult

It’s been four months since we moved Anna into her group home. It’s been a rather frustrating process for us. To begin, Anna cannot tell us if she likes the home or not. The best we can do is observe when we pull in the driveway of her group home, she seems fine, and she gets out without a problem. Unfortunately, once we enter the home and she sits at the kitchen table, she cries every time we say goodbye, while waving to us. It’s maddening. Does her wave ‘goodbye’ mean that she knows she has to stay there and is kind of okay with it or does it mean she’s upset to have to stay there? She cries at home too but there’s typically a reason for it. At her group home, we have little to go on.

There have been changes in staff without us being notified. A new staff person didn’t change her Depends from the night before when we came to pick Anna up at noon the next day. Really? And I had called two hours earlier to let them know we’d be coming. Granted, she was new, but even if you’re new, there are some basics in caring for another person. Don’t get them ready to meet their family by putting their shoes on, etc. and NOT change them from the previous night’s pee. I found myself saying, “You don’t have to be fluent in English to know how to care for someone.”

Also, Anna had been sitting at the exact same spot when I called her two hours earlier. We have Google Nest so we can talk to Anna via video at any time. It works really well except that then we know where she was sitting and when. She had no fidget toys near her, and she has lots of them there. No paper to rip, which she loves to do. We felt horrible that she simply sat for two hours.

Also, her roommates don’t exactly serve as friends. They are good people, but one is nonverbal and really doesn’t give any response when you talk to her. She will look at me but with no expression. The other roommate is always sweet and will say lovely things like, “How are you doing today?” but she never says, “Hi, Anna.” Does she know that Anna is her roommate? I think so but, as one friend said, others aren’t modeling how to greet Anna. So, I think Anna gets lonely.

We’re exploring a new group home with the same agency that provides her Day Hab program. They say it’s a two-month wait. I’m hoping there might be one roommate who knows her and can be a friend to her when she’s at the group home. We’ll see. The not-knowing is exhausting. I can spend a day worrying about Anna only to pick her up and have her yell at me for some reason. I’m still working at trying to separate from her as a mom. Even though she’s 23 years old, I find it nearly impossible.

Transitions can be rough…

Three summers ago, I learned how to find butterfly eggs on the bottom of milkweed leaves.  It’s now become a bit of an obsession for me.  While driving, if I see milkweed, I calmly look for a place to pull over without causing chaos, park and run to see if there are any eggs.  I keep a Tupperware container in my car just in case I find an egg.  Most eggs that I found this summer were on the milkweed in our own yard.  This is a much safer harvesting option since I can do it in my bare feet.

While I was checking on one of my eggs, I noticed something strange.  Somehow a new butterfly egg had found its way into one of the jars where another larva had grown.  I noticed because there were holes in the leaves that indicated more eating than one tiny larva could do on its own.  Pure gift.  I had wanted to help grow ten butterflies this summer in Iowa.  Originally, I had eleven eggs but two died from unfortunate circumstances.  Once I was cleaning out the jar and left a few drops of water.  I found the larva drowned.  Then, one caterpillar looked as if he was going into j-hang.  We were going on vacation, and I figured he’d be fine since a chrysalis hangs for at least then days.  When we got back home, he was curled up at the bottom of the jar.  Dead.  That made me sad but now, magically, I had ten eggs, my original hoped for number.

Raising butterflies happens in stages.  The first stage is about two weeks.  It happens once the egg hatches and a teeny tiny larva emerges.  Its first food is the eggshell that it came from.  I need a magnifying glass to see this larva.  At 62, my eyes require readers for all things small but this larva beats even my readers.  The best evidence is the pepper like flakes that gather under the leaf.  It’s poop, the first sign that the larva is eating and processing milkweed.  That poop flake will become larger and larger, turning into balls of poop as the caterpillar grows, requiring cleanings every few days.  Now, I’ve become adept at simply taking out the milkweed leaf the caterpillar is on, dumping the poop into the trashcan and replacing the caterpillar-on-leaf back into the jar, adding new milkweed for it to munch. 

But there was something special about this tenth butterfly.  It was on a mission.  It grew from a tiny larva into a plump yellow, white and black striped caterpillar.  Its head had two antennae that twitch as it eats.  I’ve taken so many photos of these beauties.  My last egg grew well and on Sept. 8^th it went into j-hang which is basically when it’s gotten fat enough to climb to the top of the jar, find a spot on the bottom of the lid, and spin its tiny silk pad.  (The cremaster is the black stem that holds the caterpillar.) Then, this upside-down hanging caterpillar liquifies into a beautiful mint green chrysalis with golden dots, just to be fancy.   It happens overnight oftentimes which is both thrilling and frustrating.  Only once was I able to watch it happen during the day.  There are lots of YouTube videos, but I wanted to see it live, for myself.  I still can’t quite figure out how it liquifies without ending up in a puddle at the bottom of the jar.  It’s so amazing.

In the meantime, my daughter Anna is 23 years old.  She has special needs and is mostly nonverbal.  She has become very unhappy over several months.  It became obvious to me that she was “done” being at home with us, her parents.  For being developmentally delayed, this seemed fairly typical.  At 23, who wants to be living at home with their parents if there are other options?

And there are other options.  In Iowa City, we are blessed to have several agencies that provide group homes, homes that have 24/7 coverage so that people like Anna can live independently.  Anna goes to Day Hab with one agency called Caring Hands and More.  That seemed like the most obvious choice for a group home, but a good friend was advocating for a different agency called Reach for Your Potential.  I met the Director who had started the agency.  Ron grew up playing with a girl who had Down’s Syndrome.  He knew he wanted to help others like his friend to have a good life.  Pretty good, right?  Ron also said that he’s tried to make Reach a family-like business, so they had parties (before Covid) to celebrate holidays together.  Then, I spoke with a mom whose daughter went to a group home at age 18.  She is now 37 years old and still in a Reach home.  That meant a lot, especially because her daughter is nonverbal as well.  This mom has never questioned her daughter’s safety.  Why?  “Her roommates tell me everything,” she said.  She laughed saying that they are the best protectors of her girl.  I knew what that was like.  When I came to Day Hab to pick up Anna, I would often get feedback.  “Anna was such a pill today.”  “Anna won bingo and got this prize.”  “Anna likes Dusty.”  Also, this mom said that the staff would be the first to update her on any issues.  That’s what I really needed to hear, that she trusted staff without question. 

That conversation happened in April, but it wasn’t until June that I gave Reach the green light to put Anna on the active list.  Two weeks later, they called to say they had a spot for Anna.  That was much faster than I expected but we were on our way to helping Anna find a place where she could grow and blossom.

The date for move-in was set for September 19^th.  There were many papers to sign and at times I felt like I was doing the wrong thing.  I questioned everything.  How would we really know if Anna liked the place?  We had visited, met her roommates, and talked with Anna’s three older brothers.  Matt, our oldest, was able to visit the home when he was here.  Matt lives in Scotland with his wife Sonia.  That’s a long way away so having his approval meant a lot.  He was impressed with the staff and how they answered his questions.  The two other brothers were supportive.  They saw how Anna acted and knew that, at some point, she’d need to have a different living arrangement.  Was now the right time?

My husband Dave was the most uncertain.  He had always thought that Anna would live with us forever or at least “until I died and then you’d do whatever you needed to do.”  The one thing I was very clear about was how unhappy Anna was.  She’d cry for no reason.  As we’d pull in the driveway she’d yell, “No!”  The only time she seemed happy was when we were going for a drive or hosting friends for a party at our home or headed to Day Hab.  Not to say that there weren’t some fun moments when the Anna I’ve always known would show up and be happy for a time.  But for the most part, she was clearly done with me/us.  I knew that she needed something different.

Once we saw the house, Anna would smile when I talked about her moving.  She would squeal and shake her fists in the air, as if she couldn’t wait.  Dave didn’t see that, and he insisted that I didn’t really know what Anna wanted.  When a person is nonverbal and doesn’t read or write, it’s very difficult to truly know what they are thinking.  This is true of Anna but her nonverbals are pretty convincing. The only solution seemed to be a move. It was a friend who has a daughter with special needs who said it best, “You’ll never know if you don’t try.”  Her daughter had moved two months earlier and they felt it was the right thing to do. 

Being a mom of a child with special needs is probably the most challenging role I’ve ever had.  Caring for Anna for 23 years has been rewarding, exasperating, life-changing and meaningful.  I wasn’t sure how I could ever let her go and yet I knew she wanted more independence, away from me.

Anna is beloved by so many people.  She is a gift in many respects.  Mostly, Anna just wants to be with others.  At Day Hab, she smiles and is happy to be part of a group, a gathering of individuals who all have their own personalities and challenges.  For Christmas, the played the White Elephant game.  The most coveted item was a package of Depends.  Really?  They all laughed and laughed about it because they know that most of them use Depends, but no one wants to talk about it outloud.  It’s just one tiny piece of who they are.  And I love that.  They are so accepting of each other and the rest of us too. 

Anna still loves men the best, thanks to her dad and brothers.  They adore her so she assumes that all men are cool.  In a crowd, she will find some male person who might need a little ego boost.  So, she’ll grab his hand and start dancing with him, even when there’s no music.  Or she’ll do hand games with most anyone, for hours, if possible.  Anna will engage with anyone who looks her way.  She’s not shy or embarrassed.  It’s a joy to watch her, most of the time.

There are many times when I’m too cautious and over-protective.  I butt in to make sure that Anna isn’t overstepping boundaries.  Almost every time, I’m given reassurance that Anna is fine.  No one is offended or in need of my check-in.  It’s just me.   

So, here we were, at a precipice, on the verge of Anna really becoming an adult.  I was terrified but wanting to hope.  At the very same time, my tenth caterpillar was getting ready to surprise me. 

On the morning of Anna’s official move, the long-awaited September 19^th arrived.  We had agreed to meet at the home at 10:30am.  I had Anna ready and planned to leave at 10:15am, with Dave meeting us there.  At 9:00am, the tenth butterfly emerged from the chrysalis.  I couldn’t believe it.  When it first emerges, its wings are crumpled and there’s no way to see if it’s a boy or a girl.  A boy butterfly has two distinct dots on its lower wings, one dot on each.  I wondered if this was a girl.  It would make sense but I had to wait.  It takes about three hours for the wings to fully dry out and extend into the butterfly shape we all know.  In the meantime, I had my own butterfly to deliver.

We arrived at the home just after 10:30am.  Dave pulled up right behind me so we could all walk in together.  The day before we had moved a twin bed, a dresser, a bookcase, and a small lounge chair.  Our friends, Julie, Dave and Keith, were such willing helpers, doing what they could to make this transition easier.  Keith let us use his truck.  Dave and Julie were familiar with this routine, having moved their daughter Cassie from Las Vegas to Rochester, MN recently.  After we packed up, we rode in a caravan together to Anna’s home.  It only took us about an hour and a half to complete the move.  Anna’s room looked beautiful.  Her curtains matched her bedspread that I’d bought at Bed, Bath and Beyond.  Julie made her bed with the purple sheets I’d found online.  The final touch were wooden letters that I’d painted purple spelling ANNA.  I’d even put 3M hangers on the back so we could place them immediately.  Photos of Anna, her brothers and us were also ready-made to be put on her walls thanks to Mixtiles, an online company I’d used many times before this.  It felt perfect, like a room any young woman would want to live in.  Anna danced with us in her new room just before we left.  Now we’d arrived for the official day of transition. 

Within minutes, we had signed Anna’s lease, making her space her own.  Anna was anxious to get to Day Hab so we said goodbye to her two roommates and headed out the door.  Ryan, the home coordinator, was a gem.  He promised to check in on the home frequently in the upcoming week and told us we could stop in anytime.  We also knew we could take Anna to our home anytime as well.  That helped. 

I dropped Anna off at Day Hab and felt the care of the staff there.  They knew this was a huge step for me, Dave and Anna.  I had brought her to Day Hab every day for over a year.  Interacting with the staff, I’d felt a deep connection to them and their love of Anna.  I knew that they’d be my “other” eyes as this transition moved forward.  They’d let me know if they felt something wasn’t right.

Then, I headed home, anxious to see how my tenth butterfly was doing.  It was still hanging from the lid, drying its wings when I arrived.  I really wanted to take a clear photo, so I slowly unscrewed the bottom of the container and lifted the lid.  Such a beautiful sight.  Slowly I turned the lid so I could see the back of its wings and voila, there it was, the evidence that I needed to know if this butterfly was a girl.  Of course, she was.  That simple reality was so significant.  It felt as if God was smiling on me, knowing I needed all the support I could get that very day. 

As I tried to photograph this lovely gift, my “mount” fell and the lid with it.  I panicked and picked up the lid to examine the butterfly.  She was fine.  It had been three hours and I could tell she was getting ready to fly so I gently transferred her to one of my flower boxes that overlooks our backyard.  She climbed to the top of the tallest flower and after about ten minutes, took flight.  It was a joy to see her soar to the nearest tree, free and easy.  I took this as an important anchor for me; to trust that my 23 year-old butterfly would fly free and easy, eventually.

I’m a mom of a daughter who is now 23 years old. She has a genetic abnormality -that we didn’t discover until she was born. We’ve been told that she’s “the only one” but has some similarities to others with a 9p-minus challenge in their DNA. So, I’ve been hoping to share her story in an effort to rename and reclaim the stigma of being different.