Always on my Mind

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.

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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.

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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.

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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.

World Down Syndrome Day 2017

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.

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.

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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!

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May I have your attention, please? A big announcement

No, I’m not pregnant. And, unfortunately, we’re not getting another dog.

I’ve been daydreaming about something and it’s finally becoming a reality. It’s something that has mentally and emotional energized me and makes me so passionate that I want to cry.

Are you ready?

 

 

The inspiration…

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The motivation…

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The realization…

Flier raster.pngThe “I Am Awesome Extravaganza” will be a day dedicated to celebrating our loved ones with Down syndrome and what makes them awesome.

The event will begin with a showcase, where the participants will strut their stuff on stage while our emcee introduces them to the audience. Afterwards, food and refreshments will be served and everyone will have a chance to mingle and make new friends, while enjoying some music, posing for the photographer, visiting the face painter, and taking a chance at winning raffle prizes. Proceeds from the event will be donated to the Connecticut Down Syndrome Congress.

Here’s the story of how the idea came about…One day I was reading my Google alert news and came across a story about recently crowned Miss Scott County in Virginia who has plans to organize a pageant for kids with special needs (inspired by her brother with Down syndrome). I thought that was a great idea except the word “pageant” stirs up other words like outer beauty and competition for me. Now I’m typically not an “Everyone’s a winner, here’s your participation trophy” kinda gal, but in my opinion, every kid with Down syndrome or any special needs should be celebrated. I love every opportunity to show off how awesome Hannah is. Then it hit me – why wait for an opportunity when I could create one?

Within hours I had the whole event planned out in my head. Admittedly I got carried away. Once I got to the “Fifth Annual” I had to reel myself back in to reality. It’s going to be a ton of work and I’m thrilled about that. There’s already been rejection and I haven’t even started hitting companies up for money and raffle donations.

Originally I was planning to post this after Christmas but I couldn’t wait to spill the beans. I’m still going to wait until the 28th to make the official announcement to the Connecticut Down Syndrome Congress and on the local Facebook groups. I hope with all my heart that people are interested. I’ll be doing a whole lot of “Field of Dreams” style praying. If you organize it, they will sign up, right?

Major Milestone: Unassisted Sitting

On July 27 we sat down with our Birth To Three liaison and Hannah’s soon-to-be Special Education teacher to write our Individual Family Service Plan. The developmental goal we decided on for Hannah was a lofty one – unassisted sitting. I didn’t have a clue how long that would take Hannah but the list of mini goals was a long one.

Back then, we’d maneuver Hannah into a seated position and keep our hands on her shoulders to keep her stable. The progress was very slow at first because Hannah lacked almost all of the back and core strength to straighten up or stabilize. Tummy time ended up being the best exercise for her because it helps strengthen the back and neck muscles. Slowly but surely, as the weeks went by our hands moved lower and lower down Hannah’s tiny body. From the shoulders to under her arms, then to her mid-torso, then to her hips. One day she was sitting so well all I had to do was keep my hand against her lower back to her tilt

The downside of all this was that Hannah also learned that she didn’t have to sit if she didn’t want to. It was frustrating and adorable when she simply refused to play along. Her muscles would stiffen, stubbornness fueling her to push back against my hands, and tilting her hips so her bum would slide forward. Thankfully that rebellion only lasted a couple weeks.

In mid-November the improvement in Hannah’s strength changed overnight. She was able to sit unassisted for a second or two without crumbling backwards or to the side. Her daycare teachers practiced with her every day and often reported that Hannah was improving quickly. Some of it may have been mental too, realizing that she could see and do much more when sitting up.

Pete and I agreed that Hannah would be sitting solo by Christmas. I’m proud to announce that she beat our guess by 2 ½ weeks! At her Birth To Three appointment last week she sat completely unassisted for over five minutes. Not only that, but she also played with and reached for toys.

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Now, Hannah loves to sit in front of the mirror and make faces at herself, or on the kitchen table and make faces at us and our friends. It’s amazing to watch as she wobbles and catches herself from falling. Her body must be exhausted at the end of the day from the tiny muscles contractions. Unfortunately for her, now we’re going to start teaching her how to get back on the floor to lay down.

It Finally Happened: The R Word

I’ve been dreading the day someone uses the R word around me. Butterflies in my stomach, lump in my throat kind of dread. I thought I had a good idea of how I could respond calmly, stern yet polite. I was completely shocked by who ended up saying it to me and the ability to respond was nowhere to be found.

I was involved in an unnecessary customer-caused crisis at work. A coworker and I were discussing the customer’s needs with a Sales rep, someone I hadn’t met until that moment but will be working with often.

Instead of saying ridiculous, absurd, poorly planned, shit-show, or even cluster-f*ck, he called the situation we were in “retarded.” My physical reaction caught me off guard. My hands turned to fists, my shoulders tensed, and I felt like I’d been slapped in the face and punched in the stomach. I looked at my coworker and saw a look of shock on her face.

Shortly after, the Sales rep and I were standing in the office making forced small talk while we waited for someone. I told myself I could casually bring it up in conversation…

“Oh, you live in New Jersey? I used to live there! By the way, using the R word is disgustingly offensive.”

The more I strategized, the madder I became and the less I wanted to look at him, speak to him, or help him. Clearly not acceptable behavior while at work. I put on my big-kid gloves and swallowed the emotional vomit until the customer’s problem was handled and I could have a minute alone. After a couple hours, I was finally able to retreat to the privacy of the company’s lactation room and let the pent up emotions run wild.

I was mad because, not only did this guy offend me within the first three minutes of our conversation, but he continued to be rude and pushy for the remainder of his visit. It annoyed me that someone so unworthy of my energy had affected me to that degree. (I found out the next day that other coworkers who helped resolve the customer’s problem were also irritated by the guy’s behavior and offended when they learned what he said.)

I was embarrassed because I felt like a hypocrite. I’m guilty of using the of the R word in my pre-Hannah life. Instead of saying drunk, stupid, or lame, I shamefully used “retarded.” I even caught myself saying it a few times after Hannah was born. I always knew it wasn’t a polite word to use; however, it somehow seemed acceptable in the privacy on my own world. If I’ve never been perfectly politically correct how can I expect the same from others?

I was worried because we’re almost 9 months into this journey and I wasn’t ready to hear that word. I wasn’t ready to defend Hannah. I didn’t want to hold back tears while desperately trying to lecture someone on which slang words are appropriate. It was instant defeat. I feared I’m not the advocate that Hannah deserves.

That night I told Pete the whole story and let myself get worked up again. We talked about how it’s a word that means so much to some but absolutely nothing to others, and that we should prepare ourselves to continue hearing it used unnecessarily. I can only hope that next time it happens I’m better prepared to spread some serious awareness.

CDSC 30th Annual Convention

I’m baaack.

I wish I could say last week away from the blog was productive and full of exercise, cleaning, writing, and fun family adventures. In reality, it was a busy week at work and I fueled myself with leftover Halloween candy, causing me to fall asleep every evening after putting Hannah to bed and wake up sometime between 8:30 and 9:30 pm in a total haze.

I was dying for this particular week to end because I was looking forward to attending the CDSC’s Annual Convention. My parents came up to join me while Pete and his mom tag-teamed watching Hannah. The convention was great and made me very excited to attend a national one in the coming years.

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The schedule was broken up into 3 sessions with 5-6 different program options, two were held before lunch and the Keynote speaker and the third was after lunch. At the very end of the day the older kids with Ds presented the posters they worked on during their Self Advocate sessions. The day ended with a presentation by Mark Hublar.

Session 1

10 Things Every Parent Should Know about Birth to Three – tips on effective ways to deal with disagreements or an unresponsive B23 team. The moral of the presentation was to check B on your IFSP if you don’t agree with it and your team has 30 days to resolve.

The IEP is the Key to Effective Services – main message was most IEP’s are significantly flawed and that parents must hold teachers to higher standards of accountability

Session 2

Mindfulness, “Learning to Surf Life’s Waves” – total bust, it turned into a mini-therapy session with 10 minutes of meditation techniques

American Academy Pediatric Guideline Review – detailed overview of every area where a child with Down syndrome needs health supervision based on consensus recommendations of a panel of AAP geneticists and pediatricians

Keynote speaker 

Amy Allison, Executive Director of the Down Syndrome Guild of Greater Kansas City. See recap after the break.

Session 3

Planning for the Future of Your Child with Special Needs – an overwhelming amount of information on how to plan for Hannah’s financial future

Knowing the Red Flags of Vision and Learning – evaluation by an ophthalmologist is “better” than seeing an optometrist, but strongly recommended an optometrist with experience in behavioral and developmental vision care

Presentations by Self Advocates

Most people left before this but I wanted to stay to show support and get an idea of what the life of a teen with Ds is all about (basically friends, school, Taylor Swift).

Presentation by Mark Hublar

At 51 years old Mark is an amazing self advocate. He lives on his own, drives a moped and car, has a job, and travels the country to speak, lobby, and campaign for Down syndrome awareness.


Amy Allison’s presentation focused on how to build your tribe and touched on getting through IEPs, and how to raise a strong self advocate.

Build your Tribe

Drain your moat – don’t put yourself on an island

Teach by example – using People First language, etc.

Provide strategies – help your tribe

Check ego at the door – what you want might not be best for your child

Give second chances – but third chances are rare

Focus on today & don’t borrow trouble

Make & share your long range vision

Make friends with your neighbors before you need them for an emergency

If you want people to support your child, you need to support their children also

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IEP

Make an “All About Me” book

Bring treats and a picture of your child

Are you making extra work for them?

Celebrate successes together

360* approach to behavior

Find the professional who wants your child

Have an exit strategy when trying new things

Volunteer and join PTA

Raising a Happy & Strong Self Advocate

Develop good social skills and coping skills

Ask for help and make mistakes

Have disabled and typical friends

Set bar high

Recognize potential & challenge them

Break the prompt, praise, and reward cycle

The Aftermath of Hannah’s Diagnosis

This post is essentially what prompted the idea of the blog. Every word existed in my mind for months but it took weeks to actually write them all out. Then it took another week to work up the courage to sit here, ready to give the world a piece of my heart. There were a lot of tears and a lot of chocolate was consumed in the making of this post.


My heart was broken when we received Hannah’s Down syndrome diagnosis. It was as if the labor contractions I had experienced just 30 minutes earlier migrated to my heart with the sole goal of demolishing it The emotional shock was so overpowering that it made my body ache. I was physically present but my mind was disconnected from reality, like it was all a dream. It’s a sensation I hope to never experience again.

Hannah was kept in the nursery for testing, then transferred to a children’s hospital in the evening. It was about 36 hours before I saw her again, the strangest and most depressing 36 hours of my life. My soul hurt and my heart was empty, crushed. Every positive emotion connected to bringing a child into the world was cancelled out by an equally powerful negative emotion. The strongest of all was fear. I was afraid no one would love Hannah. I was afraid I wouldn’t love Hannah.

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Hannah’s ride to the children’s hospital

I practically ran through the hospital’s parking deck the morning we went to see her. My stomach was sick from a mixture of nerves and adrenaline. I needed to see my baby. I needed to fill that emptiness. I needed her to put my heart back together. One look at her chubby face and she had me. One look and I knew I’d love her unconditionally until the end of time.

My love for Hannah didn’t change the fact that I felt cheated and the grief of losing the daughter I was expecting hit me hard. Even though I now know the grieving period is normal and expected, there are days that I’m ashamed of my weakness and embarrassed by my ignorance.

An innocent Google search to learn about my daughter overwhelmed me with an endless supply of statistics and probabilities that did nothing but encourage more anxiety and uneasiness. Family members writing in Down syndrome forums said the children in their lives were miracles and blessings. I thought these people were insane. How could a child with physical and cognitive delays be a blessing? You were blessed with a life of exclusion, stares from strangers, a child that can’t and won’t be able to do the simplest things? I was sure these people were lying to themselves. Hannah’s wasn’t a special baby – she was a Special baby. She had a defective heart. She was broken.

I blamed everyone for Hannah’s extra chromosome. I told myself we should have waited longer after our miscarriage, that my body clearly hadn’t understood the science of multiplying cells. I blamed the doctors for never noticing any signs on the ultrasounds. I blamed my obstetrician for assuring me that my genetic test results were good enough. I blamed myself for not trusting my gut and insisting on an amniocentesis. I blamed God. It felt like a punishment, a life sentence of hard labor for two people who were already working hard. I didn’t understand why God would give a child with special needs to a couple that was not financially or emotionally strong enough to handle her.

Daydreaming about the future would spiral out of control. That one chromosome plagued every thought and crushed every dream. Hannah would have friends as a toddler, while she was still cute and her delays were shrugged off as being young. After a few years the cuteness would wear off and our friends would stop inviting us over. It would be too hard for them to have us around. Our only friends would be other families in the Down syndrome community. People would stare at us in public, feeling pity not empathy, for our sad lives. Hannah would struggle in school and spend recess and lunch alone for more than a decade of her life. Afternoons would be spent in therapy and doing physical and mental exercise instead of chasing friends in the backyard, squealing in delight. Hannah would live with us her entire life. There would be no retirement. We wouldn’t get to cash out at 65. We wouldn’t have a child to take care of us in our old age. We would not be grandparents. We would only be Mom and Dad.  

One day the grieving stopped. When Hannah was about 3 months old a coworker asked me how she was doing. My response was a single word – perfect. It was true. Hannah always was and always will be the most perfect human being in the world. I was the broken one. I had no experience with the world of special needs prior to Hannah and had no concept of what Down syndrome meant for our future and for Hannah’s life. As I educated myself I became disgustingly aware of my ignorance. I didn’t know we joined a community of beautiful and courageous families. I didn’t know there are advocates whose life work is to spread awareness. I didn’t know to stop seeing Down syndrome as a disability.

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I still have bad days and struggle to drown out the ‘what ifs’ and ‘how comes’. I see children younger than Hannah practicing a skill that she’s not ready to attempt. Comparison is an ugly game and we will rarely win. The future still scares me. If I’m not careful my imagination will push me over the edge into a sea of hopelessness. I remind myself that Hannah will run around with friends. She will ride a bicycle. She will be included in school. She will go to college. She will do all these things and many more but she will do them when she’s ready. No one will rush my baby and no one, God help them, will limit her.

When I look at Hannah I don’t see Down syndrome. I see a little girl who wakes up every morning with a smile. I see the determination in her eyes to grab a toy just out of reach. I see a scar that reminds me of how much she struggled during her first few months of life. While I’m not at the point where I can say Down syndrome is a blessing, I know that Hannah is. Every day I am thankful for the time I have with her. I am thankful that her heart defect was repairable. I will get to see her grow up, unlike so many families who have lost children. Hannah was given to us to teach us about true love and compassion, to make us strong, and to spread joy (which she already does so well). I would never take Hannah’s extra chromosome away from her. It is the foundation of her life. Without it there would be no Hannah and I can’t imagine my life without her.

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Doctors and Daycare

This was the busiest week we’ve had with Hannah since her surgery. Apparently I lost my mind one day and thought it was smart to schedule two doctor appointments and start daycare all within 3 days.

Monday was Hannah’s fourth BAER hearing test that was actually completed. Even though the results of the first three tests ranged from really bad to pretty good, they were easy to administer because pre-surgery Hannah could sleep like a champ. A test with post-surgery, 6 month old Hannah required planning and a killer bicep workout for momma.

I fed Hannah an hour earlier than usual that morning hoping she’d be borderline hangry when we finally got set up in our room. The audiologist applied the electrodes to Hannah’s forehead and behind her ears and left us to eat and snuggle. Hannah was nearly finished with her bottle and kept drifting off to sleep; however, anytime I’d move the bottle away from her mouth, she’d jolt herself awake and stare at me. She clearly knew something fishy was going on.IMG_5304

I wasn’t having any success rocking her to sleep in the chair so I hoisted her up against my chest for some slow dancing and serenading. This is Hannah’s go-to sleep position but it kills my arms because she turns into dead weight. Once Hannah was asleep it was impossible to move her into a different position without waking her up and/or pulling off the electrodes which meant another 40 minutes of bicep quivering. It was worth the workout because Hannah finally has 100% hearing in both ears!

Tuesday was Hannah Banana’s first day at daycare! I was not at all surprised that I cried while getting her dressed and giving her a pep talk (be nice, make friends, don’t be stingy with the smiles). I went in a little early to meet the teachers and discuss Hannah’s physical abilities and limitations, Birth to Three visits, and her general likes and dislikes. Grandma also stopped by to see the facility and wish her Sweetie Pie a good first day. After a half day on Tuesday and a semi-half day yesterday it seems like Hannah is adjusting very well and she even learned some new noises to make.

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Yesterday was a pediatrician appointment to follow up on Hannah Banana’s post-surgery weight gain. I enjoy going to the pediatrician monthly because I get to ask my random questions instead of turning to Google for help. After confirming that Hannah’s height and weight are perfectly on track (82nd percentile for children with Down syndrome/50th for typical children) I asked the doctor about normal vs abnormal spit up, the super cute drool rash Hannah’s been sporting lately, and got approval to introduce cereal/oatmeal. While playing with Hannah’s crazy hair, the pediatrician noticed that the left/back of Hannah’s head is slightly flat, which is no surprise since she favors that side.

After work, Pete and I discussed the last three days while we played with Hannah. At one point we talked about how she’s still “crying it out” for 10 minutes or so most nights and for naps on the weekends. I told him it was more of a fussy cry now, rather than the bloody murder screaming when we first implemented the plan, so it didn’t worry me (or the pediatrician). I should have known I would jinx myself! I gave Hannah her bedtime bottle and gently put her in the crib while she was barely awake. As soon as I turned to leave she woke up crying. The crying turned into screaming and I couldn’t wait the full 10 minutes to check on her. The poor girl was sweating and crying real baby tears. I couldn’t let her cry like that after being such a good girl all week.

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I should have known this fussy face was bad news

I scooped her up and held her tight. She instantly stopped crying, wrapped one arm around my neck and one around my shoulder, and burrowed into me. There are times, like last night, when Hannah wants to snuggle so badly that her body melts into mine. I didn’t realize that I need to cuddle her just as much as she needed to cuddle me. We hugged and rocked and her breathing finally slowed down, her exhales trembling slightly. We sat in the dark, melting in to each other.

Early Intervention at 6 months

We knew from Day 1 that Hannah was a “floppy” baby, which would result in physical developmental delays. I didn’t really understand what the doctors meant until Hannah was home from the hospital and constantly cradled in my arms. She was heavy and hard to maneuver. Trying to manipulate her body to find a comfortable nursing position was like trying to move a canvas sack full of wet sand.

I knew I wanted to start tummy time right away. I’d lay Hannah on my chest and she’d lift her head in small, jerking pulls. As she got older I’d lay her on the floor and she’d briefly tolerate the exercise before quickly transitioning into silent protest. She disliked tummy time more and more each day and the pediatrician assured me that it was normal at Hannah’s age because she learned it’s hard work. lee's pictures 010

An evaluation by a local Birth to Three program done at 8 weeks showed that Hannah was not far behind a typically developing child; however, at such a young age she wasn’t expected to be doing much. As a family, and with the input of the Birth to Three coordination, we agreed to wait until after Hannah’s heart surgery to begin therapy sessions since she needed to save her energy for daily functions of life.

We gave Hannah 6 weeks to recover from surgery, at which point the physical restrictions had been lifted. At a meeting with the coordinator and Hannah’s teacher Maureen, we were asked what our goal was for Hannah. I knew it was a goal that would require time and hard work from Hannah but I said that I’d like for her to be able to sit unassisted. We scheduled weekly visits with Maureen, a Special Education teacher, and a couple visits were scheduled later on with Ann, a Physical Therapist.

Days before therapy started I was dressing Hannah one morning and rolled her onto her side to reach the buttons on the back of her shirt. Hannah was bored with my fumbling and flipped herself right onto her belly and proudly lifted her head up to look at me. I was so astonished and of course I didn’t have my phone near me to document the achievement. It was at this moment that I realized how hard tummy time must have been for Hannah pre-surgery. Not only did she have little energy, but the pressure put on her lungs must have made breathing even more challenging for her. Post-surgery Hannah was ready to work!

Physical therapy with a child is essentially functional play time. Maureen and Ann hold Hannah in different positions to help strengthen the back and neck muscles. They try to lure Hannah to roll from one side over to the other, from back to belly, and from belly to back. Our program splits the visits between home and daycare so that all of the caregivers are familiar with Hannah’s progress and what exercises to do with her.

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Hannah is an amazing student. Even when she’s tired and clearly had enough she does not cry or refuse to participate. She can easily roll to her left side to get to her belly and has no problem raising and gently lowering her head. She no longer sits up like a wet noddle and she finally has some control over that noggin. We are thrilled with the improvement in just 4 weeks!

The added benefit is a great workout makes for an easy bedtime.

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