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Birth and Beyond Parenting Blog 

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Special Needs Parenting at The Park

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Abby’s been in physical therapy since she came home from the NICU.

In the beginning, she saw her therapist two times a month in our home. When she was 3 years old, we switched to outpatient physical therapy. When she fell too far behind her peers, she went to therapy two to three times a week.

Right now, she is doing great with once-a-week appointments. (Go Abs!) I’m grateful for this more relaxing schedule, because it’ll probably pick back up again. That’s just how special needs parenting goes.

Fewer medical appointments means more time and energy for everyday fun like a post-dinner walk to the park where we live. If I’m lucky, another mom will arrive to make small talk as we push our children on the swings. Adult conversation!

Without fail, Jackson will want to move on, and I’ll need to get Abby down from her swing. Most almost 5-year-olds would be off and running after her brother, but we’re “different.” The other mom realizes.

When that happens, I might:

Continue to make small talk about how great it is to “get some energy out” after dinner, because we’re going great, and this is our normal.

Make a passing remark like, “Oh, she was my preemie,” as I help Abby get accustomed to walking on the mulch underfoot with Henry on my hip.

Quickly fluff Abby’s hair with my fingers to cover the incision on the back of her head that my new acquaintance has now spotted.

I could just open up and said Abby was born 16 weeks early, suffered a grade IV intraventricular hemorrhage with subsequent hydrocephalus and just had a VP shunt placed last month, but she’s been making great strides in regaining balance during her physical therapy sessions?

But, I’ve just met this mom. It’s like telling someone on the first date that you’re ready to start a joint bank account! I guess I could go full disclosure and mention Jackson’s a cancer survivor, too.

TMI for our first playground encounter? Yep!

Then again, every once in awhile, instead of politely shying away, a new stranger smiles and says: I love her AFO (ankle foot orthosis brace) color choices! Where did you find those cute shoes to fit them? And then our eyes meet, and we really see each other for the first time.

There’s an unspoken excitement when you find another special needs parent. It’s like discovering your soul mate in the middle of a battlefield. You’re trudging through any other Tuesday: hitting appointments, talking through insurance, washing incisions, bribing your 4-year-old to participate in therapy and giving kisses.

But then a stranger mentions their child has autism. Or hydrocephalus. A g-tube. Cochlear implants. Just hit remission. Whatever it is, often this person is my only real conversation of the day. With another special needs parent, I get support, insight and someone doesn’t cringe at the details. They offer practical advice no one else can understand.

Got a problem? These moms and dads have access to a secret underground support network and can put you in touch with someone to help you the same day.

And if a solution doesn’t exist, they create it themselves. I understand why people say special needs parents are “supermoms” or “superdads.”

We don’t come from another planet or have superpowers that allow us to fly or swing from tall buildings. We do what we do every single day because, just like you, we want to be the very best parents we can be.

Sure, we may have different experience on the playground. But we came there for the same reason you did: to enjoy the last hour of daylight at the park.

Jessica Bensten is a native of Hampton Roads and lives in Hampton with her three “miracles” Jackson (8), Abby (4) and Henry (5 months). As a mother to a childhood cancer survivor and a micro-preemie, she began the blog Mothering Miracles in 2014 to support other families dealing with health issues. Jessica also works as Creative Director for Rubin Communications Group and enjoys mixing her talents for graphic design and creative writing with community relations. She is a past member of both the CHKD Family Advisory Council and the CHKD NICU Family Advisory Council.

Baby Steps

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 walking-with-peggyIt was with a mixture of excitement, apprehension and amazement that I watched Annabel figure out this whole walking thing. I was excited to watch her conquer such a huge milestone, apprehensive about how much more she could get into, and amazed that my baby – whose birth I remember like it was just yesterday – was already old enough to walk!

 Like so many things in my parenting life, I provided opportunities and support for Annabel as she started to tackle the task of walking. I kept telling myself she would do it in her own time. I couldn’t slow down her developing skills to safety-proof the house or rush her progress so that I could check off this benchmark.

 I encouraged her efforts. I set toys along the couch to incentivize her to pull up, and she cruised along the edge of the furniture to grab them. I spent countless hours hunched over as she practiced walking with the support of my two hands, then one hand, and finally one finger for balance and security. It was rewarding to see her getting closer and closer to being a walker, but it was also frustrating.  I knew the only thing holding her back was the fear of falling. When she realized she was taking a couple of steps on her own, she immediately sat or fell down. If she would just let go of the fear, I thought, she would be walking.

 Finally the time was right. This past weekend, she finally let go. She walked all by herself! Then she babbled a phrase with a huge smile on her face. I swear it sounded like, “I did it.” Of course, we clapped and cheered. She has been mastering her walking technique ever since.

 My 9-year-old niece has been trying to learn to ride her bike. When she saw the videos of Annabel walking – falling, walking, falling, walking and finally walking – she said Annabel inspired her to overcome her own fear of falling. Her mother just sent me a video of my niece riding her bike. I know my niece was thinking, “I did it!”

 In so many life situations, we often have to take a risk, let go of fear and trust the timing in order to learn something new.

 Whether our children are figuring out how to walk, ride a bike, start a new school year, learn a new skill or face a new challenge, it is about trusting the timing. We, as parents, can provide opportunity, space and support as our children learn and grow … and when the time is right, we have to let go.

Bio’  Kate Hayes lives in Virginia Beach, VA and is a first time parent to Annabel – born on July 22, 2015. Kate is a yoga and aerial fitness instructor. She especially enjoys teaching on the beach, and is certified in laughing yoga, and prenatal yoga.  Kate and her husband, Robert, enjoy spending time with their daughter and their two dogs.

 

Anyone Who Battles Cancer is a Hero

Jackson Hero

At the time of Jackson’s diagnosis, I couldn’t imagine anything worse than having my 13-month-old go through chemotherapy, stem cell transplant, radiation and more. Because of his young age, he couldn’t talk or understand what was happening.  He just wanted to run without being hooked to a bag of chemo.

Now that Jackson’s about to go into third grade, I couldn’t imagine anything worse than having my 8-year-old go through treatment.  He doesn’t remember his cancer treatment at all. And as an 8-year-old, he can tell me how he feels about everything, balk at anything he doesn’t want to do and now he would remember everything. He just wants to run outside with his friends.

Pediatric cancer survivors are dealt a tough hand. You can’t beat cancer without treatment and treatment is not easy.  You can’t go through it without long-term side effects. Over 70% of long-term childhood cancer survivors have a chronic illness from cancer therapy and, as they grow up, they have a higher risk of heart disease, strokes and second cancers. (5 Facts About Childhood Cancer Survivors)

As far as late-effects go, I guess Jackson is one of the lucky ones. His heart, lungs, kidneys and other organs are functioning well. His chronic condition is hearing loss.

Born with perfect hearing, the chemotherapy that saved his life caused moderate to severe damage to his ability to hear high frequency sounds.  He has a hard time hearing birds chirping, leaves rustling and the f, s and th sounds.

Also, HIS MOTHER, although that is more of a selective thing.

When hearing loss occurs before learning to speak, like Jackson’s, it’s important to get help. The first step for us was starting speech therapy and getting hearing aids. The combination of both helped immensely. In fact, he was able to discontinue speech therapy after a year or so, and hearing aids just became part of life. We sailed through the early years of school.

It wasn’t until Jackson began learning to read that we faced the next challenge with his hearing loss. It just didn’t click. Reading was a struggle. We would practice and practice, and yet, it remained frustrating and he lost confidence in his schoolwork.

That’s when we took our next step, which was getting a 504 plan in place at school.

With Jackson’s new accommodations in class, he gets preferential seating, repeated instructions, individual oral tests, closed captions on movies and an FM system. As soon as his teacher began wearing the microphone, and Jackson could actually hear her voice without background noise, every paper I took out of his backpack was an A.

My hero is running and reading.

About Me

Jessica Bensten is a native of Hampton Roads and lives in Hampton with her three “miracles” Jackson (8), Abby (4) and Henry (5 months). As a mother to a childhood cancer survivor and a micro-preemie, she began the blog Mothering Miracles in 2014 to support other families dealing with health issues. Jessica also works as Creative Director for Rubin Communications Group and enjoys mixing her talents for graphic design and creative writing with community relations. She is a past member of both the CHKD Family Advisory Council and the CHKD NICU Family Advisory Council.

 

To learn about speech development for children ages 0-5 attend one of CHKD’s free workshops Speech 101: Language Development

 

 

 

 

 

Ready for Reading

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Reading has always been one of my favorite activities. Growing up, I remember trips to the library, a shelf of colorful books in the living room, and reading Nancy Drew stories with my mother every night before bed. Of course, at the time, I had no idea how important reading was to my development. I just LOVED books.

Even before she was born, Annabel and I started bonding through books. While I was pregnant, I would sit in the rocking chair in her room and read out loud. It gave me a chance to wind down before bed, and I know she was listening to my voice. Now this special connection continues every night as part of her bedtime routine.

Reading is not just a night time activity either. During the day, Annabel brings me books, and sometimes, she actually cuddles and lets me read to her. Other times, she just opens and closes the book or turns the pages before I ever get a chance to read a word. No matter what, it’s always interactive and fun. Even if we don’t get to every page, she likes to point at pictures, and I make up a story or say the names of the objects she sees. The more words a child hears in the first few years of life, the better chance she has at a broad vocabulary as an adult. It’s amazing to think how doing something we both enjoy is building her brain and setting up a foundation for later learning.

Even though she likes to look at the same books over and over, we have managed to collect many books in the past year. What can I say – I love books! In an effort to keep costs down, we buy them from CHKD Thrift Stores. When she gets a little older I am sure we’ll visit the library frequently to check out books and take advantage of the great programs they provide for children.

Every time Annabel has a well check-up with her pediatrician at Premier Pediatrics, she is given a new book as part of CHKD’s Reach Out and Read program. It’s an early literacy program that provides an age-appropriate book to a child at each pediatrician well visit until she enters kindergarten. She is too young to realize the importance of literacy, but she certainly does get excited when she sees a new book!

And, I’m excited to share my love of reading with Annabel. I know it is a passion we will continue to share for the rest of our lives. As she gets older, we can read together or discuss what we are reading, just as I do with my adult siblings. Right now, my sister, brother and I are all reading the new Harry Potter book, and we have lots to talk about.

Reading is not only a way to foster a baby’s brain development, but it can help foster strong family bonds, too.

Happy parenting and happy reading!annabel in pop pop's chair with book1

Bio’  Kate Hayes lives in Virginia Beach, VA and is a first time parent to Annabel – born on July 22, 2015. Kate is a yoga and aerial fitness instructor. She especially enjoys teaching on the beach, and is certified in laughing yoga, and prenatal yoga.  Kate and her husband, Robert, enjoy spending time with their daughter and their two dogs.

 

Love is The Easy Part

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Parenting is confusing.

The days can feel long, but the years feel short.

If you’ve ever desperately needed a break from your children, but when you got it, spent the whole time missing your kids … then you know what I mean.

I was thinking about this particular part of parenthood last night after it was finally quiet and all three of my kids were asleep. The first thing I did was break out my phone to see the pictures of them from the day.

Why am I doing this? It’s MY time. What is wrong with me?!

 Even thinking these thoughts didn’t stop me from posting a new picture to Instagram. I’m so in love with these little blonde knuckleheads. But if one of them wakes up again, I’m going to lose my mind.

Does this make sense?

Many parts of parenting don’t make sense. When you have one child, you can’t possibly imagine loving another like your first. I worried that since Jackson was so special to so many people because of his cancer journey, any other child wouldn’t stand a chance.

Then came Abby.

In the first few days of her life, I guarded my heart because there was a 50/50 chance as a 24-week preemie she wouldn’t make it. But then her tiny thumb found her mouth, making its way around her breathing tube, and I watched my one-pound-wonder suck her thumb. That was it, I was hooked. Head-over–heels in love.

Jackson and Abby ended up being four years apart. We were really in our groove: no one was breastfeeding, they were going to school, both were potty trained and sleeping through the night – surprise! – I found out I was pregnant again. I spent my last pregnancy wondering if maybe this wasn’t such a hot idea. Everyone says with a third child, noise levels go up exponentially. Laundry goes up exponentially. Sleep goes down exponentially. How was I going to love this third child when I worried so much about the other two?

And then came Henry Beau.

Oh my goodness golly – he is the sweetest little cherry on top. He’s healthy, happy-go-lucky and up for anything. It doesn’t take much to entertain him with two older siblings.

Is life louder? Sure is. Is there more laundry? Yep, that’s my white flag waving from under a large pile of dirty clothes. As far as less sleep? I mean, who really sleeps when they have kids anyway?

You may be wondering how you can love a second child or even a third. Let me tell you: love is the easy part! Get ready for the confusion, the chaos and the idea that your heart grows with each child. Even larger than your laundry piles.

 

Jessica Bensten is a native of Hampton Roads and lives in Hampton with her three “miracles” Jackson (8), Abby (4) and Henry (5 months). As a mother to a childhood cancer survivor and a micro-preemie, she began the blog Mothering Miracles in 2014 to support other families dealing with health issues. Jessica also works as Creative Director for Rubin Communications Group and enjoys mixing her talents for graphic design and creative writing with community relations. She is a past member of both the CHKD Family Advisory Council and the CHKD NICU Family Advisory Council.

Visit chkd.org/ParentingResources to get answers to your parenting questions.

Five Things I Learned In the First Year of Parenting

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Annabel just had her first birthday, which means I’ve been at this for one incredible year!

Here are five important things I’ve learned during my first full year as a parent:

1) Time goes by really fast. So many people have said to me, “The time is going to go by so fast! She is going to be asking for the keys to the car tomorrow.” I just smiled, nodded and thought, yeah right. Here I am, a year later, thinking how quickly time has flown! Gretchen Rubin said, “The days are long, but the years are short.” I’ve only experienced one year of parenting, but I completely agree.

2) I have good instincts. We’ve received lots of helpful advice. We’ve done lots of reading and research about how to care for Annabel. As I gathered information and sought out resources, I also learned to trust my instincts and know my baby. What works well for one child may not work for the next. This year I have learned to read Annabel’s cues and trust my gut. It’s working, and she is thriving!

3) Every moment isn’t enjoyable. I know it’s cliché to say enjoy every moment, but what happens when you’re really just not feeling joy in the moment? Being tired and cranky does not make me a bad mother. It makes me human. Just take it one moment at a time, keep moving and don’t waste time feeling guilty about it.

4) I need help. I wrote a couple of blogs this year about having mommy superpowers. I am still amazed at my ability to give birth and nourish my baby.  But that does not make me a superhero. I still need help, and I have learned to ask for it. As much as I would like to do everything myself, I can’t. And as much as I would like Robert to magically know what I need, he doesn’t. I have to ask for help.

5) Parenting is my priority. This is probably the most important one for me. Raising a child is a really important job. So, what if the floors don’t get swept every day or the folded laundry lives in the basket for awhile? Annabel is happy and healthy. She loves reading books with me. She even brings them to me now. So what’s more important: a love of books or a swept floor? One of her newest words is thank you! And I am so thankful for her.

I can’t believe a year has come and gone already. It has been challenging and rewarding and definitely worth it! Thank you for following my posts this past year and happy parenting!

Bio’   Kate Hayes lives in Virginia Beach, VA and is a first time parent to Annabel – born on July 22, 2015. Kate is a yoga and aerial fitness instructor. She especially enjoys teaching on the beach, and is certified in laughing yoga, and prenatal yoga.  Kate and her husband, Robert, enjoy spending time with their daughter and their two dogs.

Interested in learning more about the first three years? Attend this FREE four part series      The Magic of Everyday Moments: Zero-Three.  Coming this October to our NEW CHKD Health Center at Landstown.

 


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