Supported Employment: The End of an Era

 My mom passed away in August 2018.  Leanne had to leave the community where she was raised - her friends, neighbors, church, dayhab - to join our family in another state.  Because she is such a social individual, I knew that finding that sense of community in her new residence would be instrumental in helping her heal from her loss.  

We found a supported employment agency and they interviewed Leanne about her skills and preferences.  She told them that she would like to work in the grocery store.  Leanne said this was her "dream." 

The agency was able to land Leanne her "dream job" within the grocery store, contingent upon passing a drug test.  Click Here to see Iconic Video

They tried Leanne in a couple of different roles within the grocery store.  Neither turned out to be the right fit.  But this opened the door to Leanne's ultimate job opportunity: grocery bagger.  "Paper or plastic?" are the sweetest words Leanne had ever heard.  This is the first thing she asks customers when they come through her line.  Even when familiar faces show up and greet Leanne, she cannot proceed with small talk until the imperative question, "paper or plastic?" is answered. 

Underemployment is a significant issue that faces the Down syndrome population with available data suggesting an employment rate of only 53% (SOURCE).  While cognitive challenges can create a barrier to employment, people with Down syndrome also face lack of opportunities, transportation challenges, insufficient support systems, and discrimination.  Leanne has experienced all of these things.  

I recently told Travis that one thing I've learned with both Leanne and Josie is that, as a caregiver, we can be as proactive as possible and advocate for the best opportunities for our loved ones, but it's a dynamic challenge.  One variable changes, and suddenly a situation that worked before is no longer an ideal fit.  

Leanne's employment journey has ebbed and flowed.  Some of the challenges have been systemic, and to be completely transparent, some of the challenges have been behavioral.  Ideally, a job coach can help teach the client to do the job, and eventually back off and allow for more independence.  Leanne had gotten to the point where she worked the first 2 hours of her shift independently, and then the job coach came to keep her encouraged to finish strong during the last hour.  However, managerial changes at the store mandated 100% job coach support.  Because of staffing challenges at the supported employment agency, Leanne's shift was reduced from 3 hours to 2 hours.   That's a two hour shift, two days per week.  

There were moments when it didn't seem worth it, but we knew how important this job was in providing socialization and a sense of purpose.  There were hard moments, but there were also beautiful moments.  There are customers who are impatient and short-tempered when their grocery bagger works at a slower pace.  But there are also customers who compliment, praise, and tip their chromosomally enhanced bagger who is doing the best she can.  

One day, Leanne came home and asked, "What's a stranger?"  I said, "Well, it's someone that you don't know."  And Leanne said, "Like the customers?"  I said, "Yes, the customers are usually strangers."  Leanne chimed in, "And we don't take things from strangers, right?"  (and important lesson that we've had to review several times).  I said, "Yes, we don't take things from strangers.  Why?"  She told me that this man came through her line and she complimented his hat - it featured a sports team and Leanne is a big fan.  The man took the hat off and attempted to give it to Leanne!  Leanne politely declined because of the aforementioned policy, but talk about an example of sheer kindness and generosity from a complete stranger!  

As I am navigating caregiving for an aging adult with Down syndrome for the first time, I've questioned when one knows when it's time to retire.  Leanne's physician talks about "accelerated aging" in Down syndrome, meaning people with Down syndrome tend to "slow down" in their late 40's (SOURCE).  Signs of aging that affect the general population medically, physically, and functionally, happen earlier in Down syndrome.  Leanne will be 48 in June, and for this reason, I wanted to support Leanne as long as she wanted to work, while not pressuring her to continue beyond what she was comfortable with.  

Recently, Leanne's supported employment agency approached me about a new day program they're starting on Tuesdays and Thursdays.  It's currently 4 adult females with disabilities and one staff member.  The staff member is a former Special Education teacher and a Special Olympics coach, and she's absolutely terrific.  It seemed like the perfect opportunity for socialization with peers and customized programming in a small environment with plenty of oversight.  However, it overlaps with Leanne's work schedule.  I was a little conflicted on how to proceed, until I talked to Leanne.  Leanne immediately chose "day program with Maria!" 

Leanne handed in her resignation letter and worked her last day at the grocery store.  She received gifts from coworkers, a $5 tip from a customer, and plenty of hugs and well wishes.  She is grateful for the opportunity to spend the last five years working in her "dream job," but she's ready to move on to a different endeavor.  

We just received the schedule for the first two weeks of the day program and one day they're having a lesson devoted to dental hygiene.  Call it serendipity or a "God wink," but it definitely made me feel like the right decision has been made.  Leanne has always been incredibly passionate about oral hygiene.  She brushes her teeth after every meal!  

Please don't assume that "retirement" means Leanne will be resting on her laurels.  She will still find herself in the community at least five days a week engaging in various activities including volunteering at the library, strength training at the YMCA, Special Olympics, and serving as a Eucharistic Minister at church.  So here's to the end of an era, and then beginning of a new one!

This One Goes Out to the Caregivers

 I didn't sleep well last night.  Sleeping in to compensate for my insomnia may have seemed reasonable, as it is Saturday.  But I was greeted at 7am by my fourteen year-old chromosomally enhanced diva requesting breakfast.  It's like clockwork - she doesn't take weekends off.  

At this point, one might channel Dolly, Tumble out of bed and I stumble to the kitchen, pour myself a cup of ambition, and yawn and stretch and try to come to life, except before that "cup of ambition" hits my lips, here comes Leanne.  So I start making Josie's custom breakfast request: frozen muffins, berries, and milk, followed by Leanne's custom breakfast request: eggs, bacon, berries, and coffee.  Enter Travis bellowing up the stairs to make sure Merryn is ready to leave for swim practice.  I presume Merryn doesn't want to eat before swim, but she debunks that assumption with an ever-so-charming-teenage, "I'm starving, Bruh!"  So I dig out the sandwich press and start assembling a grilled ham & cheese for our little athlete. 

My kids have been off school for the holidays for 2 weeks.  The house looks like it: dishes by the sink, popcorn on the floor, miscelleneous socks and hair bands strewn about.  I'm surrounded by reminders of the endless domestic drudgery that takes significantly longer to do when I have this crew of 4 interrupting me, requesting my attention, needing me to make them snacks and referee their quarrels.  Oh, and since they're home, attempting to tidy is like attempting to shovel the driveway during a blizzard.

I still haven't had my cup of ambition.

Travis offers a trip to Trader Joe's while Merryn is at swim.  I've been meaning to go to Trader Joe's, as there are a few odds and ends of things I only buy there.  And having Travis with me means I don't have to push the cart, load the bags into the car, or even put things away.  He does it all for me like the chivalrous gentleman that he is.  I just get to wander around, perusing at my leisure.  Offer accepted.

This is the part where he rushes me.  Travis spends 90% of his time rushing us females.  He's always ready: no hair to brush, no stylish outfit to select, no need to "put his face on," nor fill his water bottle.  He just nags the rest of us.  Mind you, I'm standing in the kitchen in pajamas, disheveled hair, unbrushed teeth, and he expects me to get in the car.  Right now.    

I still haven't had my cup of ambition.

I snap at him to drop Merryn off at swim first and then come back and get me.  He grumbles about not planning to come back this way, but he begrudgingly accepts my terms and reminds me, one more time, that I have "six minutes" to get ready.  

I grab the last 2 egg bites from Costco and pop them in the microwave as I rush into my bedroom to put on clothes and comb my hair.  With a little luck, I may even have time to slap some concealer on the dark caverns under my eyes that notify the world that I am sleep deprived.  

I frantically rush back into the kitchen to retrieve the LAST TWO heart-healthy-spinach-and-egg-white egg bites from the microwave.  I open the microwave and...crickets...I glance around the kitchen, thinking someone must have retrieved the plate and set it somewhere and those egg bites are nowhere to be seen.  I look up and say "Where are my egg bites?"  Leanne looks stricken and fumbles with her words as she explains that Biddy got them out of the microwave, set them in front of Leanne, and Leanne ate them.  Leanne ate the last two egg bites after she had already had a hearty breakfast consisting of eggs, bacon, fruit, and coffee!  But she feels completely justified because Biddy set them in front of her.  

I don't remember what words came out of my mouth, but I remember slamming the bedroom door.  Then, I texted Travis, "You won't believe what happened.  I was already running on fumes and I'm just done."  

I grab my now lukewarm cup of ambition and stumble out to Travis' vehicle, realizing that this enormous coffee mug won't fit into a cup holder so I'm just going to have to hold it and pray he doesn't have to stop suddenly.  I start to recount my egg bite story for him when he interrupts and goes, "Can I guess the ending?  Leanne ate them!"  Now, there are 6 people living in our house and he knows exactly which one ate my egg bites without me even finishing the story.  

So I said, "Now, I need you to take me to Chick Fil A so I can eat some-deep-fried-carcinogenic-seed-oil-laden-artery-obstructing garbage before I go grocery shopping.  THIS is why my youngest child is ten and I still haven't been able to get to my pre-baby weight."  

Travis says, "Fine.  But we've got to hurry."

Happy Belated Down Syndrome Awareness Month

 Today, we have a guest post from a teacher who developed an incredibly close bond with Josie during elementary school.  It was written in honor of Down Syndrome Awareness Month, but October has come and gone and here we are, still playing catch up.  However, the sentiment remains.  Without further ado, allow me to present the lovely Ms. Kellie: 

It’s easy to write about someone who means so much to me.

Here’s my story this October—and I remain ever grateful that your daughter graced my life when she did. 🩷

Here you go:

There’s always that one student. She challenges you, brings you to tears, encourages you, and makes you laugh—all within 3 minutes. And on the gloomy days her smile is the sunshine you yearn for. This is Josie.

This past year I’ve been met with a challenging diagnosis of a vestibular disorder along with unexplained intracranial hypotension. Multiple trips to the medical center has secured a medical team that monitors my symptoms. Most concerning is my balance, my hearing and the anxiety that unfortunately comes with it. Recognizing that I will never again feel as I once did can be consuming. But it’s those days where I turn to Josie and what she taught me.

So in this month of Down Syndrome Awareness, I will once again share the lessons I learned and now live by—all because this little girl was brought into my life. And maybe, it’ll be a reminder to you, too. Because Josie is faced with challenges every day, even since birth. And yet, she chooses to own it without complaint.

Here’s what Josie taught me:

💖 Embrace all whom you meet. Literally. Not just a quick squeeze. But with your whole being. When Josie hugs, you can feel her heart beating. And when she finally releases, you have a sense of calmness, renewal, peace.

💖And when there is no one to hug? Wrap your arms around yourself and squeeze. It works, trust me.

💖 Dance. Even when everyone IS watching. Shake those hips!

💖Enter a room with your head held high, with confidence bubbling over. You’ve got this!

💖Sing. Sing loud. Even if you think you are off key. Sing.

💖Be colorful. Make a statement. Every day.

💖It’s okay to be obsessed with goldfish crackers and the color pink.

💖It’s also okay to feel frustrated. Overwhelmed. Curious. And impatient. It’s okay to…. just be.

💖When faced with something you lack interest, simply hold up your hand, state ‘Not a fan’ and then walk away.

💖 When asked how you are doing, respond with ‘I am incredible!’ Look on the bright side! Life is beautiful!

💖Appreciate differences. Josie doesn’t judge. We each had different qualities to bring to the friendship. I was my most confident when I was with her.

💖Laugh! Until you are gasping for air! See the humor in everything.

💖Remember each day you have an opportunity to shine your light and have a positive impact. Josie isn’t aware of the joy she brings. And she asks for nothing in return. So go make someone’s day better. Be like Josie.

Happy Down Syndrome Awareness month to my favorite gal—love and miss you! Every. Single. Day.

Accepting Help

 

It has been one year since this poor blog was updated.  As the kids get older, life gets busier with extracurricular activities and such.  Leanne has many medical appointments, but she never complains.  With the help of a wonderful caregiver named Cindy, Leanne is also able to participate in many fun activities including Special Olympics bowling and cheerleading, participating on a special needs dance team, and volunteer work.  Having the support of a paid caregiver means that everyone receives high-quality attention as well as maximum opportunity to participate in fun activities, as I still haven't figured out how to clone myself and be in multiple places at once.  Even though I know now that hiring Cindy was the best move for everyone, accepting that I needed help in this domain was not easy for me.

It's all too easy for caregivers to fall into the trap of martyrdom.  We want to believe that we can do it all; that we, alone, can be everything to everyone.  But this mindset can give way to fatigue and burn out.  Josie and Leanne share the same case manager, assigned by the state, to help make sure they can access the services they need including supported employment, transportation, respite, housing, and healthcare.  We're fortunate to live in a state where many services are available to individuals with disabilities, and yet sometimes, it's still hard to embrace the suggestions the case manager offers.  And sometimes the hoops one has to jump through to arrange services with paperwork, waiting lists, and staffing shortages serve as a deterrent.   

Often, caregivers are so overwhelmed that the idea of slowing down enough to research, recruit, interview, hire, and train help feels like too much to take on.  Josie recently went months without a respite provider and we managed.  But as Merryn and Lydia continue to participate in competitive swimming and many other extracurricular activities, I realized that it would be helpful to have someone who could stay with Josie so I could shift focus to my other kids.  I embarked upon the intimidating process of emailing local college professors in pursuit of a student who may want to work with Josie, and I found a wonderful young lady, whose own brother has autism.  She brings over all sorts of therapeutic and educational activities for Josie and Josie absolutely loves the 1:1 attention she offers.  Josie also appreciates not being dragged along to her sisters' activities.  And mom appreciates being able to focus on the swim meet instead of entertaining Josie.

Caregivers, please know that I get it, but it's okay to seek help.  It is absolutely worth the hassle.  Everyone is better off.  In fact, accepting help can enhance your relationship with the individual that you care for, and it can allow you to be a better version of yourself for everyone else in your life.       

Down Syndrome Awareness Month - The Elementary Years

 Josie graduated from elementary school last spring and I've been meaning to write a blog post in tribute to the team of educators who enriched Josie's life immeasurably during these formative years.  

I'll never forget the first day of preschool.  I walked Josie into the building, left her with strangers, returned to my car in the parking lot, and bawled.  When you have a child who is especially vulnerable - medically fragile, cognitively delayed, with limited communication skills - it's terrifying to entrust her to others.  Had I known that day that Josie would find her way into the arms of a team of women who would love her as though she were their own child, it would have spared me so many tears.

Today, out of the blue, in honor of Down Syndrome Awareness Month, one of those women sent me the most powerful summary of her experience working with Josie.  Not only is it more eloqunet than anything I could have written, it also underscores an investment that far exceeds my daughter's educational requirements.  It's an illuminating testimony to a relationship that cultivated mutual growth, respect, acceptance, and love.  Ms. Kellie, thank you for this moving tribute, and thank you for allowing me to preserve and share it here.

💙💛October is Down Syndrome Awareness Month! 💙💛 Here’s a story about a little girl doing big things:

After many years at home with my own children, I began feeling the nudge to jump back into education. Joining a special education team at an elementary school close to home gave me just what my teacher heart needed. Surrounded by a supportive teacher and dedicated associates, I had found my new home.

Now. Meet Josephine.

My new student was smart, a bit sassy, very determined, a little stubborn, absolutely adorable and well, she has Down Syndrome.

My early days with Josie were met with struggles and refusals, with her favorite word being ‘no’. Her abilities far outweighed her disabilities, and oh was she smart. So smart, she knew I needed HER more than she needed ME.

How would I ever be able to reach this little girl? The more I failed, the more I wanted to stay. I quickly realized it wasn’t just what I could give HER. She gave and gave and gave. Slowly we built our trust in each other.

For three years, she took me by the hand and helped ME grow. I no longer worried about following a schedule. Often I would joke that I was on ‘Josie time’. I learned to live in the moment with intentional focus. When I was with Josie, nothing else mattered. Truly.

Spending my days with Josie led to me discovering things about myself.

So here it is. Here is what Josie taught me:

💖 Embrace all whom you meet. Literally. Not just a quick squeeze. But with your whole being. When Josie hugs, you can feel her heart beating. And when she finally releases, you have a sense of calmness, renewal, peace.

💖And when there is no one to hug? Wrap your arms around yourself and squeeze. It works, trust me.

💖 Dance. Even when everyone IS watching. Shake those hips!

💖Enter a room with your head held high, with confidence bubbling over. You’ve got this!

💖Sing. Sing loud. Even if you think you are off key. Sing.

💖Be colorful. Make a statement. Every day.

💖It’s okay to be obsessed with goldfish crackers and the color pink.

💖It’s also okay to feel frustrated. Overwhelmed. Curious. And impatient. It’s okay to…. just be.

💖When faced with something you lack interest, simply hold up your hand, state ‘Not a fan’ and then walk away.

💖 When asked how you are doing, respond with ‘I am incredible!’ Look on the bright side! Life is beautiful!

💖Appreciate differences. Josie doesn’t judge. We each had different qualities to bring to the friendship. I was my most confident when I was with her.

💖Laugh! Until you are gasping for air! See the humor in everything.

💖Remember each day you have an opportunity to shine your light and have a positive impact. Josie isn’t aware of the joy she brings. And she asks for nothing in return. So go make someone’s day better. Be like Josie.

Last May, amongst so many emotions, I hesitantly approached the last day of school. Josie was a 5th grader. She graduated my school. She left. Friends, it was HARD. You see, Josie was my best friend for three years. Each morning we began our day by looking in the mirror and we’d say ‘I am beautiful.’ Sometimes we’d even say it over and over until we both felt ready to tackle the day. ‘I am beautiful!’ And she is. I am a much better person for having known her.

Returning to a new school year last August felt different. My heart was struggling. Questioning my purpose, I grabbed my belongings after what had been a challenging first week back. I pushed open the door of the building to find a very big 6th grader who, without any hesitation, ran into my arms to share that same hug I always remember. Josie came to check on all of us—to make sure WE were okay. To remind us that we can do hard things. Just like her. While she navigates 6th grade without us, the bond she shares with others is stronger than ever. And I am so grateful.

Thank you to my incredible Special Education teacher Stacy S. for first, trusting me with your treasured student and second, for all of your guidance. Another shout out to my fellow associate Jill K. Without you, I would have fallen many times. Your smiles and hugs were everything.

Josie is blessed with a family who loves her, challenges her, encourages her, celebrates her. Follow Josie on Instagram @catfishwithketchup and laugh, cry, and celebrate Josie with me.

Now, go give someone a BIG hug!

#downsyndromeawareness
#belikejosie

Caregiver Self-Care and Support

 I used to tell my mom that she should have had ten kids.  She was so maternal and she absolutely lived to take care of others.  I did not inherit this gene.  And now that I'm Leanne's caretaker, I realize that God knew what He was doing when He gave Leanne to my mom: she's the equivalent of ten kids!  Ha!  I'm teasing...a little.  But in all honesty, Leanne's presence in our home has opened my eyes to a whole new perspective: Caregiver.  

The caregiver role can manifest from many different scenarios: parenthood, caring for an aging/elderly parent, caring for a sick spouse, and on an on...For me, personally, the distinction came when Leanne moved in.  It changed everything.  My children were already established in a routine.  Our family of five was a well-oiled machine.  Enter Leanne: it was a crash course in legal guardianship, Medicaid waivers (and wait lists), healthcare specialties (PCP, Urologist, Psychologist, Audiologist, ENT, GI, etc.), employment opportunities, volunteer opportunities, day programs, fitness programs, socialization opportunities, transportation, scheduling...

In a way, it was a welcome distraction from my shock and grief over my mom's illness and passing.  I did not have time to wallow; I had so much to figure out.  Add a couple of health scares and a global pandemic, and I quickly familiarized myself with the notion of "caregiver fatigue." 

Recently, the National Down Syndrome Society approached me and asked me to do an Instagram Takeover in honor of National Family Caregiver Month.  This organization, who does so much for the Down syndrome community, wanted to put a spotlight on caregivers.  We were honored to be a part of it.  That process was the catalyst to thinking about my caregiving journey.  Beyond that, the feedback we received from other caregivers inspired this blog post.

Confession time: It took me two years after my mom's death and Leanne joining our household to recognize that I was not navigating my caregiver role properly and to make the necessary changes to proceed in a healthier way.  It was so much easier to focus on taking care of others - particularly Leanne.  This gives way to burn out.  And when the caregiver is depleted, everyone who depends on that caregiver suffers.  Here are some things that I found beneficial in helping me fortify myself, so I could offer better care to others: 

1.  Diet and Exercise - I became consumed with helping ensure Leanne had nutritious food per Dr. Brian Skotko's recommendations, as well as access to fun fitness opportunities at a special needs gym. When Leanne had her choking incident and several procedures to expand her esophagus, I took her to feeding therapy and pureed everything that I set in front of her.  All the while, I wasn't the least bit concerned with my diet or fitness routine.  Shame on me.  When I decided that changes had to be made, I truly reaped the benefits of weight loss and feeling better by simply consuming more lean proteins and vegetables and watching my carb consumption.  I spent time grocery shopping and meal prepping food for MYSELF.  That didn't take away from the meals I planned for the family - it just factored myself and my well being into the process.  

2. Alcohol/Drugs - Another big component of my lifestyle overhaul involved giving up alcohol.  What started as a health/weight loss effort, turned into a larger conviction once I started researching alcohol's effect on the human body.  I used to truly believe that Type A, neurotic perfectionists like myself  genuinely benefitted from the relaxation effects of alcohol.  What I learned is that alcohol was actually increasing my anxiety and sleep disturbances.  I haven't had a drink in more than a year, and at this juncture in my life, abstaining is the best decision for me.  If you're curious to read more, I highly recommend the book "Alcohol Explained" by William Porter.  And if you're more of a podcast/YouTube person, check out Annie Grace.  And while I would welcome anyone to look into the benefits of reducing alcohol intake, I would also encourage people who are under great stress to discuss phamaceutical interventions with their physician.  In much the same way a diabetic requires insulin to manage blood sugar, our psychological health can benefit greatly from the right prescription drug; even if it's just to help us make it through a temporary period of emotional duress.  

3.  Outdoor time - I read books on this, too, but I'll spare you the boring details.  For me, I think that being in my house is a constant reminder of the chores I have to do: laundry, cleaning, sorting through the mail, tending to the plants, organizing closets...the list never ends.  When I'm in my car (which is much of my day), I'm reminded of the jam packed schedule and time constrains resulting from transporting four people to appointments and activities.  But when I'm outdoors, be it on a walk, gardening, or even taking my kids to the pool, my brain can truly be free of the chorus of responsibilities and truly just enjoy relaxing in nature.

4.  Hobbies - I laugh as I type that word, because busy moms don't have time for hobbies!  And yet, our mental health can benefit so much from unplugging with something that has nothing to do with providing care.  I discovered handlettering last winter and it became a compulsion for me.  I would use my kids' Crayola watercolor paints to make abstract designs on paper, and then I would handletter inspirational quotes on my paintings after my kids were in bed.  I am not an artist and the vast majority of my projects were ugly disasters.  But that's not the point; it was a therapeutic process for me.  Likewise, I used to think that time spent reading was wasted unless I was reading nonfiction and learning something new in the process.  However, over the summer, I took my kids to the library a lot.  And I would pick up one or two silly fiction books to read on our pool days.  Talk about a fun, mindless escape.  It greatly helped me relax.  

5.  Time out - it's not just for kids.  When I feel myself starting to get overwhelmed and irritable, I will withdraw to my bedroom, shut the door, and enjoy a "time out."  Guess what - none of my kids have ever suffered injury during one of my time outs.  My house has never burned down during a time out.  The world functions just fine without me for a few minutes. 

 

Likewise, sometimes it can be overwhelming having five people talking over one another, demanding my attention all day.  I am an extrovert but even I crave solitude.  I have found it beneficial to wake up before the rest of my family so I can enjoy my coffee in peace and brace myself for the day ahead.  I don't set an alarm; my body naturally rises early.  And I truly enjoy that time of day when my house is perfectly silent.

6.  Seek Out Sources of Inspiration and Faith - My mom's illness and death were awful.  She needed me and my kids needed me and my sister needed me - I felt like I was being pulled in so many different directions and no matter who I chose to tend to, it resulted in guilt because I was neglecting someone else. The stress was so great that I wanted to crumble, but I couldn't.  By listening to psychologist Dr. Jordan Peterson's lectures on YouTube, I learned that voluntarily assuming a challenge resulted in a more positive emotional state than the defensive posturing system associated from fearfully bracing for catastrophe.  I derievd a lot of pride from the fact that I survived that period in my life.  It was awful, but I did it, and I'm stronger for having done it.

Since my mom's passing, I have found that turning to faith can offer strength, comfort, and enlightenment.  I'm fortunate to have many tremendous faith role models, and I find that the more time I spend within my religious community, the more I receive comfort in God's message.  At a recent faith formation gathering, another parishoner shared a story about how he lost his mother at a very young age.  In listening to him tell his story, I felt a whole new level of healing in my grief journey.  This year, I'd like to grow in faith even more.

7.  Help Someone Else - This may sound counterintuitive that you need to seek out someone else to help when you're already drained from caregiving, but hear me out...Sometimes emotionally extracting myself from my own situation and investing in acts of service towards others really reframes my mindset.  In the Prayer of St. Francis, it says "For it is in giving that we receive."  And sometimes that intrinsic boost that comes from acting in service to another person is just the tonic required to transition from feeling depleted to feeling fulfilled.  

8.  Ask for help - This particular point generated so much feedback from caregivers on Instagram.  My experience has been that when things become overwhelming, I know I need to move heaven and earth to build a support system.  We have never lived in the same state as our family, and therefore Travis and I have always had to find outside care providers.  During the pandemic, Leanne's activities were obliterated and she was stuck at home day in and day out.  Her mental health decline became very apparent.  She was withdrawn, agitated, and lost.  We tried virtual talk therapy and Leanne's communication challenges made it ineffective.  My breaking point came over the summer when Travis was out of town (when one element is out of place, Leanne usually struggles) and her negative attention-seeking behaviors were keeping everyone awake at night and had me really questioning how much more I could take.  I ended up going on NextDoor, care.com and even contacting the church to try and find someone who could help.  Leanne needed to get out of the house.  She needed activities and attention beyond what I could provide.  My kids needed a mother who wasn't sleep deprived and short fused.  And I needed a break, too.  

It took awhile, and it cost some money, but we finally found a care provider who could take Leanne out of the house for 18 hours a week and transport her to community engagements including Special Olympics, fitness, volunteering, and other recreational activities.  This has made an enormous difference for Leanne and for myself.  

Many parents are hesitant to trust anyone else to provide care for their children, and I understand that.  However, as the dependent individual reaches adulthood, we have to learn to let go.  Leanne is in the community for work and I cannot supervise her there.  She relies on special needs transportation services and I cannot supervise her there.  If she attended a day program, I would not be able to hire and supervise every staff member.  And if she lived in a group home - forget it!  I have found that it is worth the time and effort to search for the right care provider, and to train that person, for the peace of mind that comes from having a break from the 24/7 demands of care.  Furthermore, your loved one's life may be greatly enhanced by forming a  relationship with someone other than yourself.  

If you have a friend or family member who is a caregiver, please volunteer - insist - on picking up (or staying with) the individual who needs care so the caregiver can have a break.  Some individuals thrive on consistency so maybe you could commit to a regular weekend schedule - a 2 hour outing every Sunday.  I assure you that this is one of the most beneficial things you can do to show your support to a caregiver. 

9.  Build a Tribe - There is an immense relief in venting to someone who "gets it."  In recent years, I watched a relative become a caretaker to his wife when she was diagnosed with dementia.  He found an Alzheimer's Support Group and he attended the meetings faithfully.  Now that she's gone, he attends a grief support group.  Likewise, I have made numerous friends who have children and siblings with Down syndrome.  Some of my closest "Ds Community Friends" have been found thanks to social media.  It's remarkable how many commonalities unite us, even though we're all over the globe.  There's something reassuring in being able to exchange stories and ideas with people who can relate.  

10.  Humor - Anyone who has followed our journey for awhile is aware that my number one coping mechanism is humor.  God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the sense of humor to laugh at this nuthouse I live in.  My mom used to call me frequently with funny Leanne stories.  Now, I document the #LeanneHollywood stories on Instagram.  If nothing else, we have an endless supply of inside jokes beccause there's always something to giggle about around here.  

Down Syndrome and Preparing for Puberty

I have a Type A personality.  I like information; the more, the better.  I like to be prepared.  Sometimes I overprepare.  I can be a little neurotic.  It's part of my charm.  

Our oldest child just turned eleven.  Guess what's around the corner: puberty.  I would be lying if I said that this notion doesn't give me anxiety.  What's a neurotic, Type A mother to do?  Well, I must take the bull by the horns and tackle this head on.  

And as I always have, I'm happy to share my experiences as both a sibling and a parent of individuals with Down syndrome (within reason) in an attempt to benefit the whole community.  Because, despite all of the pitfalls of the Internet, it does allow for a valuable exchange of information.  And this blog is here to offer real life experience that serves as a helpful addendum to any clinical information you can gather from various books and websites.

Step 1: Gather Information - Have no fear: I have a book!  It's a pretty cool and comprehensive book, too.  It's written specifically for individuals with intellectual disabilities in simple and direct language with lots of graphics and photos.  It's called "The Girls' Guide to Growing Up by Terri Couwenhoven.

They have one for boys, too.  You can find it HERE.  

Step 2: Write a Social Story

Last night in the bathtub, Lydia (also known as "Biddy") said to me in an urgent whisper-yell "Mom!  Look - Josie is becoming a woman!" while frantically gesturing to her chest.  You see, Biddy was excited, but she was trying to be discreet.  We knew this day would come.  And if my six year-old noticed it, it's about time we face it.  So today, I stopped into Old Navy and I purchased some cami training bras.

What I did next should come as no surprise: I drafted a social story.  It's what I do!   Here's where my lifetime of experience with special needs comes into play...I've learned, time and again, that the more taboo a subject, the more tempting it is to discuss to whoever will listen.  Take this classic story from Aunt Leanne (I have no idea what happened to the photos on this old blog post!).  I have so many stories involving Leanne embarrassing my mom and I delighted in these stories so much more before I assumed the role of the one who would field the embarrassment.

Every family has a different threshold for modesty and different ideas about propriety and that's okay.  For me, I want my children to feel comfortable coming to me with questions and concerns so I try to be receptive and nonchalant while gently steering our family's values into the discussion.  I remember when Merryn put me on the spot about the birds and the bees and I froze and changed the subject quickly!  You see, she was really young. But she's always been advanced and inquisitive beyond her years.  Mama Hop shamed me when I told her and insisted that the next time Merryn brought it up, that I tell her everything.  And I did! 

Josie is different.  Because of her intellectual delays, Josie needs a very simple explanation, and many, many repetitions to learn a concept.  But the other tricky part about Josie (and many individuals with special needs) is that she doesn't have the same social instincts nor inhibitions that her sisters do.  So if she learns about something that's taboo, she wants to say it as much as possible to get a BIG reaction out of people.  

Pop Quiz: What do we do with attention seeking behaviors?

You named it: We ignore.  I tell Josie where (in the bathroom) and with whom (parents or a trusted adult) she can discuss certain things and when she brings it up outside of those parameters, I remind her once, and ignore the rest.  Without a reaction, the taboo words lose their luster.  

But it's important that we don't avoid discussing these inevitable things for fear of embarrassment.  We need to prepare our kids and we need to allow for enough time and repetition for them to learn how to successfully take care of their bodies.  While I find the aforementioned book incredibly helpful for guiding these conversations, I decided to break each topic down and address them with a dedicated social story for each one, starting with...drumroll please...bras.  

Ugh! Cringe, I know.  But we can do this!  And it's important that we do this.  Because teaching our kids to take care of their bodies, hygiene, and sexual urges is a critical part of health and wellness, peer acceptance, and social integration.

Click here for a free PDF of the whole social story

Here is a clip of Josie's first read-through:

Notice how she hung on to that "we don't talk about it."  As she self-talked herself to sleep, the bulk of the monologue was about "private" and "we don't talk about it."  I suspect there will be plenty of discussion about it whether I like it or not.  LOL!  Such is life with our chromosomally enhanced friends.  It's never boring!  

Disclaimer: While I have resolved to not only educate myself but share my findings via this forum, some topics are difficult to share within the confines of family privacy, internet safety, and keeping personal information personal.  That's why I offer the book recommendations along with advice for how you can draft your own social story.  I am not a professional; just a mom.  Please direct any specific inquiries about your child to your physician or a behavior analyst who can aid in teaching individuals with special needs how to take care of their bodies.