This is a first of a series of Mom/Dad stories on how special needs parents raise their special children.
Today I have asked Emerald to tell us how a typical day with Hailey goes, how she takes care of her as a working mom, with the challenges along the way and the joys of seeing her daughter develop in her own way.
Hailey, now three, has Down syndrome and her mom Emerald is a full time elementary school teacher.
Please enjoy reading Emerald’s story- Raising a Child with Down Syndrome, her Hailey.
A Day with Hailey
by Emerald Mingoa
Raising a child with Down syndrome is a challenge and it even gets more difficult when you are a working mom.
Because I have to go to work every day, I am an early riser and the night before, I already plan on what food to prepare for my Hailey.
With her older siblings, it’s not much of a planning because they are easy to feed.
Though my Hailey has a big appetite, she’s quite choosy when it comes to food. She likes them savory. Something that would really tickle her taste buds.
Breakfast is a really important meal for her. After taking a bath, she expects to have a hearty meal.
We find it really amusing when her eyes turn big as she tastes her food and she likes it. She would do the thumbs up to her father’s delight as an approval that he did well in cooking.
When Hailey wakes up in the morning, she can be very demanding for attention, she wants to be caressed, and of course, who are we not to give in?
I bathe her or sometimes her older sister would do that. For her, bath time is play time.
I cannot recall since the day she was born that she cried over bath time, which I sometimes see with typical kids.
After bathing and dressing up will be her feeding time. Now that she’s 3, she would drag her high chair and climb over it which makes us laugh and beam with pride.
Hailey is truly becoming independent!
Though you cannot leave her on her own feeding (you have to be at a distance because she would end up playing with the food, adding up to your unending task), she tries to feed herself.
She has a big appetite for food and her favorites include pasta and roast chicken.
Hailey would point to the fridge and make a licking sound referring to the popsicle which Jozsa, her older sister, makes for her. She would dutifully comply finishing her food because she knows her popsicle treat is waiting.
Playtime is fun time
Playtime would be her next thing to do. She learned to say ” clay, ” referring to the play dough she likes to play a lot.
We are all her playmates at home.
Hailey rekindles the ” small child, ” in all of us.
A few more hours and it would be feeding time again.
She has also learned to say “dede,” a local baby term for milk bottle, which she could finish in one sitting.
Nap time and socializing
Hailey loves to sleep in the afternoon. She would even sleep longer when there’s calming music playing.
Her nanny would bring her to school ( it’s a few minutes walking from our home ) later, after her nap time. There, she is able to mingle with kids which develops her social skills.
She used to be scared and aloof with them, but mingling with them in school, teaches her to be friendly and sociable.
She has now lots of friends.
She loves watching the television. Her favorite shows are ” Upin and Ipen, “ a Malaysian cartoon series, featuring twins and their learning adventures, and “Miraculous Ladybug,” also a cartoon series.
She has learned how to hum the tune of their theme songs.
For sure, Hailey loves to watch cartoons with kids as characters.
She would clap her hands in admiration and would sometimes imitate the words that she constantly hears.
Hailey can now say words such as Mommy, Daddy, the name of our dog Myka though not so clear, dede, referring to her feeding time, and words referring to her toys such as doll, clay and car, which she likes to ride a lot.
She may not be so good in uttering words, but definitely, she can also communicate through sounds and actions.
Hailey still cannot talk in sentences but truly she can send her messages across and we can understand.
During eating time when she’s full, she would get your attention motioning to return the small bowl that she uses, to the sink.
At three and 5 months, toilet training is still a challenge for Hailey at this time.
Slowly, I introduce her to her potty trainer, but she doesn’t like the idea of sitting on it at the moment and hopefully she will soon get used to it.
She still wears her nappy all day. Good thing is, she can say the word ” poo poo, ” so we are positive that it will be soon that she will be out of her diapers.
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As a teacher, I am starting to teach her to learn the alphabet and the words that go with them.
We would start with A as apple, B ball and commonly C would be cat but instead of saying the word she would make a meowing sound, to our delight.
The same also applies with other letters like E as in egg, she makes a gesture like putting food on her mouth.
Hailey really gives joy to our family, with all her developments.
On Being a Working Special Needs Mom
It is definitely a challenging day juggling with work and taking care of Hailey, but the support of people around me lightens the burden of it all.
My co-teachers always understand my situation and are always there to lend a helping hand.
I know that God never gives us anything that we cannot do.
No matter how difficult it can be, there are ways where you can get through.
A few more years and I know it will become easier to take care of Hailey.
We are all excited when she eventually goes to school, which would mean that she has become more independent.
My support group
Social media is a big factor in making me informed of Hailey’s condition.
I have joined the Facebook group, ” Down Syndrome Association of the Philippines, ” ( DSAPI ) , which is a non-profit organization exclusively for Down Syndrome families.
I am grateful that I found this platform where we share the same interests and varied stories in caring for our Down Syndrome kids.
I know that we are one and we learn from each other.
But of course my family is my greatest support. My husband and my other kids are always there for Hailey and me.
And her nanny/ babysitter definitely, who takes care of her when I’m at work, makes my day easier.
Hailey loves her “Yaya Melody” because she is so caring and patient-never screams, always soft-spoken and readily gives in to her demands ( not always good, but Hailey is such a brat sometimes, thus so happy when she gets what she wants! ).
” Yaya Melody ” brings Hailey to school late in the afternoon where she joins my pupils in their activities, like this practice for their Christmas party the next day.
Isn’t Hailey a graceful dancer?
To show her love for Yaya Melody, Hailey says “bye” and gives her a hug and a kiss before she goes home to her family.
After school, when the babysitter is gone, I have to attend to household chores by myself, which is usually preparing food for my family, especially Hailey who is inspired to play good when she’s full.
Having a special child to care for, not having your husband around because he works overseas, and still working full time, can be such a tough job.
Thus, I see to it that I take care of myself as well so I can always be there for Hailey and her sisters.
It’s like pouring a cup into another cup.
I have to be healthy for my loved ones so they stay healthy as well.
When Hailey dozes to sleep on weekends, I run to the saloon for my nails and my hair coloring.
I have to look presentable not only for my work but I have to pamper myself once in a while to feel good about myself and feel confident that I am still the dazzling mom even if I have three kids, including a Down syndrome daughter.
My dreams for Hailey
The days are fast and Hailey is now three years and 5 months. She is much more active and wanting for challenging activities.
Hailey is a girl with many talents. In the future, she could be a singer or maybe a band member. Learning from her older sister Amber, she likes to play the guitar and sing. We are so delighted of her when she does this!
Hailey also loves to dance, even without music, as you can see in the video above. She is just a happy kid, so innocent and loving!
I believe she is ready for school next year, though I was told she can be admitted to formal schooling at the Special Education program ( SPED ) only when she turns five.
In the meantime, I plan to enroll her in a local preschool class who handles typical children her age.
I never stop dreaming big for my beloved Hailey.
I have read some articles about adults with Down Syndrome who excel in their chosen careers.
I believe that Hailey is capable of becoming successful and will find happiness ( though being happy is inherent to them ) in everything that she does.
My Hailey is becoming mature each day, but she will always be my baby.
Raising a child with Down Syndrome
I feel so lucky having my daughter Hailey, who was found to have Down Syndrome at birth. Though I was not ready of her arrival, we have wholeheartedly welcomed her to our family.
Growing up, Hailey has shown lots of developments and caring for her is a constant struggle because I am working full time and my husband is not always around to help, but of course other support comes from her sisters, babysitter, my extended family, my co-teachers and other special needs parents that I communicate with online.
Big challenges in raising Hailey cannot compare to the joy and pride that we have of her achievements at 3 years and 5 months.
Did I say that Hailey loves to mimic me when I do my make up before work? With her toy make-up set, she would put on her “lipstick,” which she has learned to say, and would pretend that she is also going to work.
Such a darling!
I will be here forever for my beloved Hailey.
To all other working moms out there of Down syndrome kids, I am with you on this journey and we will always survive each day that God gives us to handle.
Our kids’ smiles and hugs and showcase of talents truly erase all our weariness at the end of the day.
Are you a special needs mom or dad of a Down syndrome child?
How are you facing the challenges of raising him or her?