New Year, New Blog Goal

On December 8, 2018 By LeeIn Down Syndrome, Hannah, ParenthoodLeave a comment

I have a half dozen half-finished blog posts from this year that were never finished. Some were emotionally too hard to continue, like Hannah aging out of Birth to Three and her week in the hospital. Others were like a transcript of my frantic inner dialogue and far better suited for discussion with a best friend. And then of course there was the token “Hannah is the best and I’m so lucky she saved me from a mediocre life.” For 2019 I set an extremely reasonable and attainable goal of at least one post per month; feel free to hold me accountable and harass me if I haven’t posted by the 28^th of each month. To show you how serious I am I’m even starting this month…

A few months ago I wrote a guest blog post about raising a daughter with confidence and self-love. After writing, re-writing, editing, and more editing I finally submitted the piece, complete with a picture and bio. The next morning I re-read my submission, worried that I missed major errors the night before. One thing stood out to me that hadn’t the entire time I worked on the post. I never mentioned, until my bio at the very end, that Hannah has Down syndrome. My frantic inner dialogue kicked in immediately:

Wow, what a bait and switch. I wrote the whole post and never mentioned her extra chromosome? I’m a fraud! How can I write about parenting her if I don’t mention she has Down syndrome? I have a whole blog and Instagram account about her life where I never shy away from her diagnosis. Does it look like I’m hiding the truth about her?

Rational thinking finally kicked in. I wrote about the only way I know how to parent, and that happens to be parenting a child who has Down syndrome. Sometimes I think I’m even a little tough on Hannah because, aside from a few exceptions, she’s very capable of age-appropriate skills. Reviewing my nearly four years as a parent there isn’t anything I would have done differently, regardless of how many chromosome’s Hannah has.

If you’re interested the guest blog post is after the picture.

Raising a daughter with confidence and self-love

Raising a child to be a good person is a daunting task. Raising a child to be a good person, have confidence, and love herself fearlessly is an extreme sport. In an age of everything-shaming it’s imperative that we find ways to teach big lessons to our littles, to build them up before anyone can knock them down, and give them tools to navigate the world. With only three years of parenting experience I’m certainly no child-rearing expert but I know what works best for my little Hannah Banana, and these are seven of the ways I’m teaching her about confidence and self-love:

Praise & Praise Some More

If Hannah had a dollar for every time she received praise she could have retired at age 2. She’s always had a whole squad of cheerleaders between home, daycare, and school that continuously provides positive reinforcement. I throw “good job” and “great work” around like confetti because I think the benefits of praise outweigh the possible disadvantages. It continues to motivate Hannah so much that she’s often heard praising herself.

Set Expectations & Give Explanations

I noticed a change in Hannah’s behavior once I started giving explanations along with my expectations of her. My theory is that my instructions come across in less of a “because I said so” way and she doesn’t feel the urge to do the exact opposite; it’s more of a request than a demand. I’ll gladly take the extra seconds to explain my “why” when the outcome is less likely to result in defiance.

Encourage Decision-Making

If the average person makes 35,000 decisions a day, how many extra does a parent make for their children? I try to reduce my decision fatigue by giving Hannah opportunities to make choices. They key is to phrase the question with options, not as an option. Not only does Hannah make an adorably exaggerated thinking face but we seem to have less meltdowns because she has a sense of ownership over her decision. For example, “It’s time to go – can you put on your shoes?” turns into “It’s time to go – you can pick your pink shoes or blue shoes.”

Promote Independence

Tying in with expectations and decision-making, I encourage Hannah do as much as possible on her own or with little guidance from an adult. Sometimes she makes this easy, insisting on getting her own yogurt from the fridge or unpacking her bags after school. These simple tasks can then take a significant amount of time and patience but the look of pride on her face is worth it. In true toddler fashion; however, there are times when Hannah needs more a bit more motivation but with creative phrasing and heavy praise I can usually get her moving.

Create Boundaries

I want Hannah to know that, even at 3 1/2 years old, she has say over her body. We don’t force her to hug anyone, even family members. I ask for a kiss goodbye at daycare instead of assuming she wants one. Instead of frowning and cajoling her we counter with blowing kisses, high fives, or fist-bumps. The same rules apply to cuddling on the couch or any physical playing like dancing or tickle fights. No means no; all done means all done.

Embrace feelings

Children don’t cry to frustrate or annoy us; they cry because they’re frustrated. Or scared or hurt. Or they have no idea how they fell. They don’t have the vocabulary to explain their feelings so their emotions manifest as tears or tantrums. When Hannah cries, whether from falling down or because I ended screen time mid-Elmo’s World, I don’t tell her she’s okay. I don’t tell her to stop crying. Under no circumstance will I tell her how to feel.

Model Confidence

I can’t authentically teach Hannah to be confident if I’m putting myself down. The F word (fat) is never said and she never sees me pinch my belly or jiggle my thighs. She sees me own up to my mistakes and clean up my messes but will never hear me call myself stupid. She watches me do hard things and cheers me on. I’m far from perfect but I have a little girl who looks at me like I’m the best mom in the world.

One final tip, and possibly the most important, is to follow your gut. There’s an infinite amount of advice available to parents these days. Read all the books and all the blogs. Join mom groups in real life or on Facebook. Ask friends, family, and doctors for opinions. Then only do what’s best for you, your child, and your family. Do it forever or do it for a week. Trial and error is not failure if you’re learning and growing from the experience. Parenting should be about progress, not perfection.

Bio:

Lee Ulinskas is a mother, wife, and dog lover. She shares her adventures of parenting a child with Down syndrome on her blog and Instagram account Life with Hannah Banana.Her love for children led her to becoming a certified children’s yoga and mindfulness instructor and a certified nutrition and wellness consultant. When she’s not home with her family or at her day job in the corporate world, she’s continuing her education with various trainings, attending wellness events, or, most likely, at Target.

Watch out, 2018…Hannah’s coming for you

On January 4, 2018January 4, 2018 By LeeIn HannahLeave a comment

Dear Hannah,

You totally rocked 2017. The list of milestones and achievements is almost unbelievable.

You progressed from five independent, wobbly steps to walking around the house like a boss. While you know being carried is much faster you usually compromise with holding hands when we reject your laziness. Couches and chairs are no longer obstacles, unless you’re trying to climb while carrying food. You work diligently at unzipping bags and putting on clothes, hats, headbands, and jewelry. The self-praise when you succeed is a necessary part of the process.

Watching you run or perched at the top of a slide takes my breath away; it’s equally adorable and nerve-racking. Please realize I will never stop saying “be careful.” More important than learning how to move your body you learned that it’s okay to fall. We’ll always cheer for you because falling means you tried. In the rare case you do cry we know it’s bad. I joke with people that I’m starting a toddler rugby or roller derby team for you because you’re the toughest kid I know.

Your tenacity helped you master the art of physical comedy. We noticed your comedic chops when you were only weeks old, looking at us, wondering when we’d get the joke. You quickly graduated to impersonating us (hands on your hips like Mommy, groans of achy joints like Grandma, muscle-man pose like Daddy) realizing it resulted in smiles and laughs. Your interest and ability to imitate us is likely why you excel at learning sign language.

Over the summer you leveled-up with overly exaggerated gestures and pratfalls followed by sighs and laughter. Thankfully the typical low-muscle tone associated with Down syndrome didn’t affect your facial muscles too much. Your expressions, combined with verbal reactions, make you a walking-talking hyperbole.

During this past year you also discovered how to use your voice. We’ve seen you watching our mouths move as we talk, studying how to make those same sounds. Hearing you speak a new word amazes me, even if it comes out sassy as heck, because I know how hard you worked to form it. You sure have figured out how to share your opinions and blossomed into a talented toddler negotiator. It’s not always stubbornness we hear. You can request certain foods and songs and love to point stuff out to us at home or the store. Best of all, the carseat and bathtub concerts are longer, sillier, and more understandable.

Sadly there’s been some communication frustration lately which proves your desire to speak and that your need for new signs is greater than my ability to learn them. Is that why you don’t talk much at school? I promise your teachers and friends will understand you if you’re patient. Your cartoon princess voice masks your underlying determination, whether you’re trying to get someone to laugh or to get your way, so I know you have the ability to bridge the communication gap.

Now, my little love, don’t think 2018 is going to be carefree. You set the bar high and we adjusted our expectations accordingly. You’ll be starting school soon – taking the bus, meeting new friends, learning a new routine. It’s okay to be shy at first but don’t hide that magic for too long. Your classmates will help you grow and learn and you’ll teach them about acceptance and inclusion. Your new teachers and therapists will have big girl goals for you in preschool; I know you’ll crush them all.

We have no doubt you’ll succeed this year. You’re life began with a foundation of perseverance. You’re strong-willed but equally kind and silly. Add in those big blue eyes, long blonde hair, charming smile and you’re the human form of a Disney heroine.

Love you always,

Mommy

My Sidekick

On July 20, 2017July 20, 2017 By LeeIn HannahLeave a comment

Banana had some serious big girl pants on Monday night. She helped me unload the dishwasher. She put food in the grocery cart. She dictated which songs to sing while we shopped. She pointed to a picture of a boy so she could show me his facial features. She tried so hard to say ears, nose, teeth, and chin. She took the food out of the cart and put it on the checkout belt. She negotiated bedtime on the drive home. She invented a game of running away from me while I tried to change her clothes. She laughed until she couldn’t stand. She knew why it was funny. I loved every moment. And part of me hated it.

Hannah seems to go through developmental growth spurts, the last one starting a few weeks ago. Suddenly she decided that she wants to walk more or, if she’d being held, she wants to help carry stuff for you. She picks up new signs immediately but also tries to speak the words. She wants to get herself dressed and undressed. She crawls onto the couch with a book and reads to herself. It’s truly amazing to see her put pieces of the world together, to watch her try her darnedest to be solve a problem, to see the recognition in her eyes when she answers a question. Her little voice chirps ‘yeah’ or ‘no’ but is full of certainty. Again, I love it and hate it. We wait patiently for these milestones and then she bangs them all out at once, preventing us from savoring each one individually.

I always had an image in my mind of the relationship with my future daughter – my sidekick and little helper. I lost focus of this picture briefly after Hannah’s birth but each day she showed me that she’s the girl of my dreams. All these big kid skills she’s been learning lately were preparation for the moment my sidekick was officially ready to take her place. As we walked up to our house after a long day of work and daycare, my little blue-eyed, fair-haired darling held her hand out for mine, giggling as she stomped up the steps. And I walked beside her beaming with pride.

Always on my Mind

On June 29, 2017 By LeeIn Down Syndrome, HannahLeave a comment

As I packed for a weekend at the beach with Hannah and some friends I out-of-nowhere remembered something I read on a blog a while ago: the writer mom forgot her son had Down syndrome. I can’t say that has ever happened to me. Even for a short trip to the beach I’m reminded of the extra help and supervision my child will need. That extra chromosome plays a part in every activity every day, maybe not a leading role, but it’s always on my mind.

Every playdate requires extra planning. Childrens’ museums are usually stroller-free zones and my worst nightmare. I can’t assume Hannah will want to walk and I can’t carry her and the diaper bag all day. Parks and playgrounds are okay if they’re geared toward little kids and we’re the only ones there. At the last playground playdate Hannah was too nervous with the older kids running around so we ended up watching from the stroller.

There’s a reminder every time I look at the calendar. Another appointment to go to, another appointment to make. Hannah’s schedule is busier than ours and we often require extra help from the grandparents. I can’t imagine doing it all without them. We’re also lucky our employers are so understanding. I feel like I was barely at work last month because Hannah had so many 3 and 6 month follow ups.

It’s even tough to swap kid stories with friends and coworkers sometimes. I don’t know what it’s like to have a baby that doesn’t sleep all night. They don’t know what it’s like to force your baby to take a bottle in the middle of the night. I don’t know what it’s like to just watch a child develop on their own. They don’t know what it’s like to share small milestones with therapists and specialists. Yes, our kids all throw tantrums. Yes, our kids all have their quirks. Yes, our kids all develop on their on schedule. But you can’t understand what it’s like to be a special needs parent until you’re knee deep in it.

They’ll also never understand how amazing it is. How excruciatingly beautiful life is with Hannah. Every day she shows us what Down syndrome really is. It’s not just the doctors, the therapy, the delays, the work. It’s patience and perseverance. It’s singing and dancing in the bathtub, the car seat, the grocery store. It’s watching her reaction when we see one of her daycare friends at Target or a summer concert. It’s the twenty minutes she needs to say goodbye and give hugs before we can leave. It’s the pride and self-praise when she busts out a new skill or repeats a good behavior. It’s the magic in her eyes and the joy in every smile.

We All Fall Down

On June 9, 2017June 9, 2017 By LeeIn Hannah1 Comment

There are days that I fly up and down the wooden stairs in our house. Sometimes I pause and think how awful it would be if I fell and was seriously injured while Hannah was home. How long would it be before someone would find me? Should we install a panic button so Hannah can call for help? Would the dog even care? Even worse is the fear of falling while holding Hannah.

Unfortunately, last night this fear came true. Pete, his brother, and I just finished an awesome evening hike. Pete took the dog home to wash off the swamp water she walked through and I went to his parents’ house to pick up Hannah. I chatted with Grandma for a bit, got Hannah from the crib, and headed down the stairs.

Next thing I know, Hannah and I are bouncing down the steps. When we landed at the bottom Pete’s mom took Hannah so I could stand up and I saw the blood all over my shoulder where I had been holding Hannah. I grabbed my girl and rushed her into the bathroom. It looked like she bit a hole through lip. Grandma grabbed some washcloths, I popped Hannah in the carseat, and we rushed to the hospital. Hannah went between crying, screaming, and sleeping during the longest 6 mile drive of my life.

The women at the registration desk were incredibly efficient, and then everyone else seemed to be a heck of a lot less worried than Grandma and I were. It was obviously a busy night but in my mind nothing was as important as my little girl – who now looked like a victim in a horror movie. Hannah went in and out of sleep, with bouts of screaming whenever a nurse or doctor tried to touch her. She finally calmed down after a Ketamine injection, had a CT scan (which came back fine), and then the PA stitched her lip up (with help from 2 more doses of Ketamine). The sweetest nurse cleaned all the blood off of Hannah’s face and hair and our little girl was finally recognizable again.

Throughout this whole ordeal I felt like the world’s worst mother. It was horrifying – way worse than the recovery days after Hannah’s heart surgery. This was my fault. I was furious at myself. If I had left my shoes on after the hike I wouldn’t have slipped. If I hadn’t been in such a rush to get home to eat leftover pizza I wouldn’t have slipped. After everything this kid has been through the last thing she needed was a late night trip to the ER thanks to her clumsy mother.

Then, for some reason, I got irrationally mad at the Universe and Down syndrome. I was mad that I understood every word the doctor was saying to me about Hannah’s treatment plan. I was mad that he asked me if I worked in the medical field – or if I just learned so much from being Hannah’s mom. I was mad that I knew people with Down syndrome burn through sedatives quickly and that I forgot to tell the PA. I was mad that people ever say “everything happens for a reason” because there’s no good reason for this to happen. I was mad that this awful, but normal, childhood accident isn’t Hannah’s first experience with sedatives and heart rate and oxygen monitors. I was mad that, once again, wires were snaking out of my baby’s jammies and we were cuddled up in a small hospital bed.

Hannah woke up this morning like nothing happened. We went to her year end show at daycare, picked up her precautionary antibiotics, then headed to the pediatrician. The doctor said the stitches look great but Hannah needs to take it easy for a few days. We also need to visit the dentist to see if her top teeth were damaged. I’m rockin’ a fractured sacrum and a wicked headache. But, we’ll all be okay.

What if I fall?

On May 11, 2017 By LeeIn Hannah, heartLeave a comment

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I needed that quote 2+ years ago when I was f-ing terrified of Hannah’s diagnoses. Down syndrome and a heart defect seemed insurmountable back then. I remember sitting in the hospital’s cafeteria with my dad one day after Hannah was born, telling him I hated when people said that Hannah was lucky to have parents like me and Pete. I was so sure we were going to fail that girl.

I had extreme anxiety leading up to Hannah’s heart surgery in the form of horrifying nightmares and struggling to breathe at the thought of the impending procedure. The anxiety subsided once her surgery was over but I still went into every doctor’s appointment with overwhelming fear. Fear of another surprise, fear that there would be something else wrong, fear that the 47th chromosome would keep messing with our baby. As Hannah grew and we learned more about our little girl we settled into this beautiful life. We did not fall. We soared.

I’ve become a believer that the Universe sends signs to guide us, warn us, encourage us, etc. Six months ago I was given a rose gold heartbeat necklace shortly before Hannah’s cardiology appointment. It was the appointment where the doctor told us Hannah wouldn’t need surgery if her condition didn’t change. I should have recognized the new sign when I found this bracelet a couple weeks ago and just had to have it. I should have known what it meant – surgery is back on. It’s frustrating and really really scary to feel like your daughter’s heart can change as easily as the weather forecast. The doctor can’t give us any timeline but confirmed another surgery is unavoidable.

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So here we are again, standing at the edge of the great unknown. Waiting for the cue to jump. Waiting to see if we fall or fly.

Don’t Miss the Magic

On April 15, 2017April 15, 2017 By LeeIn HannahLeave a comment

If you’ve ever met Hannah Banana, or seen her Instagram pics, then you know she’s a total ham. The girl loves attention. We started using #hannahformayor on IG because Hannah does her version of the whole “shaking hands and kissing babies” thing every time we go out. Watching her connect with people is adorable and nothing short of magical.

Usually Hannah receives a smile, wave, or ‘hi’ in return. Best case scenario – the person tells Hannah she’s so cute and Hannah does the cheesy sign we taught her. In the last four days Hannah mayor’d at Home Depot, Panera, a local restaurant for happy hour, Target, and a burger joint. She said ‘hi’ over 100 times, tried to share a used baby wipe and a half-eaten french fry, and gave hugs to two strangers. We also found out she has a small fan club at Target.

I can happily say that during these encounters no one has ever asked about or hinted to Hannah having Down syndrome or special needs. It’s not a topic I try to avoid and I’d certainly love to spread some Ds acceptance, but I always want the focus to be on Hannah first. She’s a beautiful, happy, funny little girl with a lot of joy and love to share with the world. A diagnosis doesn’t change that.

Unfortunately there are times when people are too preoccupied with their cell phones, too focused on their own microcosm, or too cool to engage with a kid. Hannah stares people down until they react or until she eventually moves on to the next ~~victim~~ new friend. I truly feel bad for the people who miss Hannah’s magic.

World Down Syndrome Day 2017

On March 22, 2017March 22, 2017 By LeeIn Down Syndrome, HannahLeave a comment

There’s a difference between awareness and acceptance when you have a child with special needs. Sometimes it’s a fine, blurred line and other times it’s a chasm.

There are times when awareness seems limited, and those moments are a mother’s worst nightmare. Awareness is an asterisk next to Hannah’s name. It’s a reminder that she’s included but different. It means there will be a day we argue with her school and compromise on her needs. Or that people will over-accommodate, anticipating that Hannah ‘can’t’ or ‘won’t.’ It means there will be people who don’t take her seriously or try to take advantage of her delays.

Yesterday was not one of those days. Yesterday was a day of tear-inducing, heart-melting acceptance.

Acceptance is your daughter’s daycare happily celebrating World Down Syndrome Day. Not just her room – the entire facility. It’s seeing the halls decorated with mismatched socks that the kids decorated. It’s seeing the teachers and children, most who don’t even know Hannah, rocking their colorful socks. It’s a message on Facebook thanking us for sharing the day when all the gratitude should be directed towards them.

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Acceptance is your employer initiating a company-wide celebration, asking employees to wear wacky socks, and creating an interactive game out of it. It’s handing out stickers to people you rarely work with and being met with huge smiles. It’s a rush of coworkers coming over to see Hannah when she arrived for a special visit and talking about it the next day.

Acceptance is inspiring and humbling. It left me wondering, once again, how we ended up with the best family, friends, and coworkers. So thank you, everyone. You knocked our socks off by rockin’ yours!

Being a Big Girl

On March 13, 2017March 13, 2017 By LeeIn HannahLeave a comment

At night Hannah and I lay on the recliner, she watches the stars on the ceiling and I watch her. The light from the Twilight Ladybug reflects on her porcelain skin…red…green…blue… Her eyelashes flutter with each slow blink and her wispy, baby-hair bangs sweep across her forehead. The look in her eyes is a mixture of comfort, contentment, and wonder. She’s absolutely gorgeous.

I keep staring, amazed by how much her face has changed since she was an infant. And how pretty much everything about her has changed since she moved to the toddler room at daycare in November. There are times at home when Hannah refuses to let me be out of her sight. She will hunt me down, then insist on being on my hip or in my lap. Knowing where I am just isn’t enough. Mixed in will be moments of the fiercest independence, the most sincere amazement, and the sweetest self-praise. She’s a full-fledged toddler now and she kicks ass at it.

I’m actually stunned by how calm Hannah is when her life must be so confusing. Her family, teachers, and therapists trying to teach her to take care of herself and make decisions. Then those same adults saying variations of ‘no’ all day. Sit at the table but don’t put your feet on it. You can throw a ball but not your cup. Eat this food but don’t put that in your mouth. Be a big girl but don’t be too big too fast. It’s no wonder toddlers throw tantrums.

I don’t consider myself a patient person but I give Hannah every ounce I can. She’s navigating a world that I’m a stranger to as well. I slowly gave up on idealistic plans like no television, vegetables at every meal, Pinterest-level crafts and games every night. Now we have Sesame Street or nursery rhyme videos on almost every night, she ate vanilla pudding for dinner last Friday, and sometimes we play for an hour with just a baby wipe. It can’t be that bad when she’s learned dance moves from Sesame Street, self-feeds the pudding with a spoon, and likes to clean our floors with the wipes.

4 Ways Hannah Impressed Me Last week

On February 27, 2017February 26, 2017 By LeeIn HannahLeave a comment

1. She got her own snack from the pantry.

One morning Hannah and I were chilling in the den before it was time to get ready for daycare/work. Perpendicular to the entrance of the den is the kitchen pantry, which is Hannah’s new favorite place. I was drinking my coffee and Hannah was playing in her kid-sized armchair when she suddenly realized the pantry door was open. She slithered off her chair, crawled into the pantry, giggled and giggled, then crawled back to the den with a package of Baby Mum-Mums in her hand. She gave me the package to be opened, wriggled back into her chair, and waited for me to hand over the [completely smashed] rice cakes.

2. She solved a problem by herself.

That same morning Hannah was sitting on our bed, playing with her Twilight Ladybug, and waiting to get dressed for school. It was too bright in the room for the stars to shine on the ceiling and Hannah seemed annoyed and frustrated. I could tell she was trying to figure out where the stars went. First, she watched her hand as she hovered it over the ladybug. Then, she held the ladybug in front of her and looked down at her jammies. Finally, she put the ladybug on its side and propped it on a pillow so the stars projected on the wall.

3. She sassed me in sign language.

Our Birth to Three home visit last week was Developmental Therapy and Speech Therapy. Hannah wanted me to play her animatronic cow that sings ‘Old MacDonald’ but I wanted her to practice saying ‘moo.’ Here’s how the exchange went:

Hannah: [signs more to the cow]

Me: Tell me what the cow says and then we can listen to the music.

Hannah: [signs more to the cow]

Me: The cow doesn’t know sign language. Tell mama what the cow says.

Hannah: [looks me straight in the eyes and slowly signs more]

After we all stopped laughing Hannah gave us a quick ‘moo’ and directed her attention back to the cow.

4. She wanted to help & do things herself.

Lately I noticed that Hannah wants to be the one to turn lights on/off, open/close doors, and put things in shopping baskets. She wants to pick out her own snacks and serve herself meals at home. Hannah’s also been trying to put her own clothes on, which I think is a huge undertaking for such a little kid. She loves playing with her pants, getting one leg in, then taking them off and doing it again. Shoes, socks, and her hat get pulled off as soon as we’re in the car and she spends most of the trip trying to put them back on. And of course, everything she does results in clapping and the cheesiest smile.