Unconditional LOVE

I have been blessed with unconditional love throughout my lifetime. I have experienced the unwavering love of my parents, grandparents and sister growing up. And now that I’m a mom, I can honestly say “I get it”. I’ve learned you don’t need to be a parent, though, to understand or experience that level of devotion. Many people have the capacity to love others, aside from their parents and children with deep love and fierce loyalty. Unconditional love, for me, means that you feel a powerful connection to another person’s soul, and a deep admiration and respect that nothing can shake. Forgiveness, although difficult at times, happens somewhat naturally when you possess an undying love for another person. I have been blessed to say I receive and give unconditional love to many people in my life. As a mom, I’ve had the pleasure of witnessing the unconditional love between my own children. Sure, sibling rivalry is an actual thing. Not all brothers and sisters feel a close connection. Some argue a lot and still love each other very much. Sadly, others did not grow up close or may be estranged from one another as adults. That’s exactly why I am so grateful for the bond between Matthew and Faith.

From the beginning, Matthew was so proud and excited to become a big brother.

I heard a lot about a new baby coming into a family often making the older child feel jealous. They inevitably give up some of the attention when another child comes along. As a result, jealousy can turn to resentment, years of bickering or competing for attention. Matthew was only 4, so I had to get creative when talking to him about a new baby coming along. I wanted to build him up as much as possible so he would never feel slighted or loved any less. I took advantage of every opportunity that came along during my pregnancy, to make it all about him. Instead of saying the baby this and the baby will need that, I would talk about all the wonderful things HE can do with her and for her. I told him how proud I was of him and the fact that since he was such a good boy I KNEW he’d be an amazing big brother. I explained that being a big-brother was an honor and a very important job. Knowing early on, that Faith had Down syndrome, we were able to discuss that too. I explained the baby as God’s gift to all of us. I told Matthew that she had an extra chromosome, which meant she would need a lot of help with learning things, but it also made her extra special. “What a great big brother you will be, Matthew!” I focused on how fun it would be for him and all the ways he would help her. He couldn’t wait! From the beginning, Matthew was so proud and excited to become Faith’s big brother. He took his job very seriously. Matthew would go on and on about all the things he would teach his little sister. When she was born, she had a feeding tube and needed open heart surgery. As you see pictured above, Matthew thought she was perfect! He promised to always look out for her and protect her. He has without a doubt, kept his four-year-old promise, all these years.

They have always been equally impressed by one another.

Words cannot accurately describe the fullness of my heart, when I see them look at each other. They have always played with each other so well. He would jump around, dance or make silly noises just to see her smile. Then he’d day, “Look Mommy! I made her smile!” And I’d respond with, “Of course you did buddy. That’s because you’re such a great brother and Faith loves you.” Matthew would do whatever he had to make her laugh. I continued to praise Matthew for always being a terrific big brother whenever he’d spend time with her. Both Matthew and Faith would watch each other’s baseball games with such excitement. Matthew was at every dance recital, horseback riding trail-a-thon, and Special Olympics event. Both showing excitement and pride for one another, clapping and cheering. There were many times over the years when someone mistreated Faith, made a nasty comment or questioned “what’s wrong with her?” Matthew always went into full-on protector mode and sprang to her defense. I again, praised him for protecting his sister. To this day, Faith idolizes Matthew and he simply adores her. They have always been equally impressed by the other.

Matthew never misses an opportunity to steal a hug from Faith. He can not get enough and she’s happy to oblige.

Today, Faith is 14 and Matthew is 18 years old. My heart overflows with love and pride to see them interact. It’s amazing to see how well he understands her, especially since she is non-verbal. He knows her sounds and behaviors and can quickly discern the problem and what to do about it. Matthew recently left for college, which is about 5 hours away. Although Faith cannot say with words how much she misses her brother, she signs for him often. Zoom meetings and face-time have been a Godsend. As hard as it is for me, to be without my son, part of me feels that it has been harder for the two of them to be apart. These two, in my opinion, are the epitome of unconditional love.

Keep in Touch

Do you have a deep sibling connection? Want to share your story? Drop your comments below. I’d love to hear about your relationship. I hope that our stories resonate with you and you are touched or inspired. Remember, always “Have a Little Faith”! Stay well!

Medical Issues- A Happy Ending

In The Beginning

When I was pregnant with Faith, she struggled in utero. Halfway through the pregnancy, doctors noticed her organs were enlarging. Most concerning was her heart. She had a large ventricle septal defect (VSD). Knowing she would ultimately need open heart surgery, they kept a close watch on her progress. After countless tests and several ultra sounds, they realized that one side of her heart was growing, filling with fluid. Other organs were filling with fluid and everyone grew more concerned. The specialists ultimately determined that something had to be done, if we were to save her.

We decided on a somewhat, experimental procedure for Faith, while she was still in utero. They suggested an intrauterine transfusion, or fetal blood transfusion, for Faith, to replace her red blood cells, hoping it would allow the fluid and swelling to go down. So, with the fear of losing my baby, we signed off on dozens of papers, basically saying we wouldn’t sue anyone if it all went terribly wrong. My life, as well as Faith’s was hanging in the balance. It was such an uncommon practice that they used us as a medical example of training for medical students. The room was filled with about a dozen people. Including us, there was one nurse was for me, monitoring all my vitals, the technician performing the ultrasound to see Faith, and yet another assistant for the surgeon, an anesthesiologist, a lab runner and about 5 medical students, complete with their clipboards and notepads.

The procedure began with the doctor warning the medical students that they must not touch my gurney, bump into anything or speak. As he inserted the 10 inch needle into my pregnant belly, aiming at Faith’s umbilical cord, a curious med student came too close and bumped into me. The angry look from the surgeon and fearful looks on the nurses’ faces made my heart skip a beat and my eyes fill with tears. Thankfully, no damage was done and he proceeded to drive the needle in, watching the ultra sound screen to guide the location. I had to be awake throughout the entire procedure and lay perfectly still. One fraction of a centimeter could have proved fatal for Faith. He entered into the umbilical cord to inject medicine to put Faith to sleep, in order to do the blood transfusion. If she had moved at all during that first needle, it would have been life threatening. God steadied the doctors hand and kept Faith still. Phase one was complete.

Once Faith was asleep, the chaos ensued. They had to act fast, as Faith would not be asleep long. Another long needle was inserted into my pregnant belly to draw out her blood, the runner had to literally run down the stairs, so as not to risk being delayed by elevators unpredictable timing. He ran the blood to the lab to determine red blood cells and amount. The whole time the surgeon and I had to remain perfectly still as he still had two 10 inch needles inside me that had to remain in position. I was praying the entire time and watching the doctor. He was calm, focused and very still as sweat dripped down his face, his hands never moving at all. The room was silent.

As the runner returned, spouted off numbers, the assistants, technicians and nurses went back into action. The doctor injected Faith blood back into her cord and carefully removed the needles. The procedure was successful. And then we waited.

We were monitored for a while. The ultrasound showed Faith doing well. My vitals were all within range. So we were released. We went home grateful that we both pulled through and praying that the procedure would reduce the swelling of her organs.

The following week, ultrasounds showed that it was in-fact successful and had reduced the swelling. However, two months later the swelling of her organs returned and the doctors opted to do an emergency c-section, instead of repeating the transfusion procedure. She had 8 more weeks of the pregnancy to go, but they thought once she was born the fluid would naturally go down, if she stayed in utero she may not make it. I was terrified.

After the c-section, Faith remained in the NICU for 6 long, worrisome weeks. The doctors said her organs were of normal size but she still needed open heart surgery, to repair the large hole in her heart. She was on a feeding tube and heart medication for 5 months. She was very lethargic. Our home become a mock up of the neonatal unit with feeding tubes, pumps and medicine around the clock.

Answered Prayers

It finally came time for her open heart surgery. As we met with the doctor, prior to surgery, everything he explained was a warped distant, whisper. I couldn’t stop staring at his hands. He was a large man, about 6’4″ and 250 lbs. and I remember noticing how large his hands were. I couldn’t stop wondering “how on earth could those large hands perform a precise, intricate surgery on my tiny, premature baby’s apricot-sized heart?!”

When it was time, we rode up a private elevator to the operating room entrance. I held Faith close, against my heart, praying that our savior would protect and save my baby, guide the hands of the surgeon and ultimately heal her heart. The elevator doors opened, we were only allowed to step off far enough to give Faith to the nurse. Handing over my baby in that moment was the hardest thing I ever had to do. We stepped back into the elevator and had to wait.

With my family all in the waiting room, we went there to be together until Faith’s surgery was done. I never sat even a minute. I paced the hallway outside of the waiting room saying the rosary. Before I could even finish the third decade, it was over. The nurse came in and said it was successful, the hole in her heart was successfully repaired and Faith was doing well! “Praise God! Thank you Jesus!” were my very first thoughts.

Faith was home 3 days later, thriving, happy and healthy. From that day forward, she never needed medication again and to this day her heart is strong. It was as if she was reborn, finally an active, alert baby. We felt so very blessed and grateful.

Keep in Touch

Have you and your child been faced with medical issues? Want to share your story? Drop your comments below. I’d love to hear about you and your child. I share our stories with you, so that you may find comfort in knowing that you are not alone. Remember, every child and every situation is different. Have faith! Stay strong. Stay well!

“Mommy Time” vs “Me Time”

Job Title: Mommy

There is no other job, that is as wonderful and rewarding, yet difficult and draining, as being a Mommy!

We are the CEO of our home. We are doctors, maids, playmates, chefs, teachers, taxi drivers, and therapists. There have been days, especially when both of my kids were very young, I thought to myself, “Who are these kids? And why do they keep calling me Mommy?”. It happens. We are pulled in many different directions, in order to do many different tasks throughout the day. Especially, this past year, in the midst of a pandemic, with everyone stuck inside most of the time, it can get intense. Some days, I feel suffocated.

If you follow, Life With Faith, you know, my daughter has Down syndrome and is nonverbal. Although she’s 14 now, and very smart, she still wants and needs me, very often throughout the day. When it’s a long stretch of time, 24/7 for a full week, I often feel frustrated that I can’t accomplish all the things I set out to do, for myself. She wants my attention. She wants to play games, go places, take a walk, do puzzles, and practice her reading. Of course, I want to have that quality time with her. So, I do what most moms do. I put my to-do list to the side, to play with my girl!

The emails wait. That book I’ve been waiting to read get’s put back on the shelf. That long, power walk, in solitude, out in the fresh air, gets put on hold. However, after several days in a row of going non-stop, I long for “Me Time”. Time, just for me, to be able to do whatever I want, whenever I want to do it.

And yet, when those rare days occur, as soon as she’s not here… I miss her.

What I’ve Learned

I’ve learned that I need to make the best it. I need to make the most of the time I do get. When she is needy and wants my attention, we do the things she likes to do. We dance, play at the lake, work on puzzles, just to name a few. I’ve realized, too, that I am blessed that Faith actually loves doing household chores! What teenager do you know doesn’t complain about doing chores? Better yet, she actually enjoys helping. I’m not sure if it makes her feel grown up or if she is trying to be like Mommy. Maybe a little of both. Whatever the case may be, I’ll take it. It actually enables me to get some of my to-do list items done, while I’m spending time with her. I can accomplish both. Mom-Win!

Then, the times that she is busy on her own, I can steal away a few moments to do what I like. Even if it’s in those sporadic, stolen moments throughout the day. Learn to roll with the punches and take what you can get. Every little bit of “Me-Time” helps. As I sit here writing, Faith is, independently, practicing her spelling words. So while she is occupied and happy, I have about 15-30 minutes to do something I love to do… like write. I am grateful for the much needed, “Me Time”.

Even if it’s in those sporadic, stolen moments throughout the day. Learn to roll with the punches and take what you can get. Every little bit of “Me-Time” helps.

Gina Panzino Lyman

It is rare to have a whole day to myself. A day to take that long walk. A day to have the freedom to read the new book that’s been patiently waiting on the shelf. A day to have the opportunity to go for a long drive, with my husband, just the two of us. A day to have the chance to write. So until that day arrives, I will enjoy every moment with my daughter and be thankful for the stolen moments, in between.

Keep in Touch

Have you learned your own ways of finding time for yourself? What stands in your way? Drop your comments below. I’d love to hear what you have tried and what works for you and your child. I share my thoughts and feelings with you, so that you may find comfort in knowing that life is hectic. Me-Time is necessary. And you are not alone. Don’t be so hard on yourself. Take care of you, too. Stay well!

DIY At-Home Therapy for Children with Down Syndrome

Our Kids are Missing School

During these crazy times of social distancing and remote learning, we must be diligent in keeping up with our children’s therapies. Faith is usually pretty good at occupying herself, when I’m teaching my 5th graders through zoom lessons. Although, it’s obvious she misses her teachers and her friends, when she signs “school, teacher and friends”. The social interaction is so important for all children. Our kids are lonely and sometimes bored. It’s been a struggle to get her interested in her own zoom lessons. She needs quick, to-the-point, musical, fun interactions. She loves being ‘hands-on’, which is something we’re all missing, while learning remotely. I worry about her missing her lessons and therapy. As a teacher, myself, I know all too well, how challenging it is to keep my students attention. I try new and creative lessons, often, that will make it more fun and entertaining for them. I must say, Faith’s teachers and therapists are working very hard at making their zoom meetings engaging. Having said that, every child learns in a different way. For the most part, zoom lessons, unless musical or physical, just don’t work for Faith. So, I have to supplement at home. I’d like to share what I am doing. Hopefully, you can take away one or two that you can use with your child.

What I am Doing At Home

As a teacher, I’m used to making learning not seem like school ‘work’. After a couple decades in education, I have a few tricks up my sleeve. There are countless ways to teach through play. Learning through ‘doing’ is fun for all of us, at any age or ability level. Here is a list of activities I do with Faith. She loves that I play with her and learning is then not only beneficial for her educational goals, but quality mommy-daughter time, as well.

  1. Puzzles- works on fine motor skills, spacial awareness and problem solving; Occupational Therapy, Speech and Math
  2. Baking- works on fine motor skills, hand strengthening; Occupational Therapy, Speech and Life Skills

3. Piggy Bank- sorting coins, learning which is which, putting in the slot; works on fine motor skills, counting and money: Occupational Therapy, Speech and Math

4. Playing outside- kicking/throwing and catching a ball; works on gross motor skills, hand/foot eye coordination: Physical Therapy, Speech and Physical Education

5. Walk outside- long walks (extending time and pace with time), collecting or observing and discussing leaves, flowers, birds; works on gross motor skills, appreciation and education of nature: Physical Therapy, Speech, Physical Education and Science.

6. House Chores- dishes, laundry and vacuuming; works on fine and gross motor skills, coordination: Occupational Therapy, Physical Therapy, Speech and Life Skills

7. Big Girl Like Mommy- getting dressed, brushing teeth, washing face and hands, fixing hair; works on fine and gross motor skills, coordination, self-care, hygiene: Occupational Therapy, Physical Therapy, Speech, Health and Life Skills.

8. Corn hole/Bowling/Skee-Ball- (she has these games at home, but they can easily be made with paper towels as bowling pins, bean bags or small balls in buckets) under-hand toss or roll; works on hand-eye coordination, fine and gross motor skills, coordination, following directions: Occupational Therapy, Physical Therapy, Physical Education, Speech and Life Skills.

9. Boggle- reading, spelling, signing and saying words; works on literacy, builds vocabulary: Reading, Spelling, and Speech.

10. Library- choose any three books and snuggle up; works on literacy, builds vocabulary, imagination: Reading, Spelling, Speech and most important… cuddle time!

Keep in Touch

Have you developed your own ways of home-schooling fun? What are your obstacles? Drop your comments below. I’d love to hear what you have tried and what works for you and your child. Don’t be so hard on yourself. Get creative. Do the best you can. There is a opportunity for learning in all that we do. Learning can be fun. Enjoy 🙂 Stay well!

Homeschooling My Daughter with Down Syndrome

During these crazy times of school closings and social distancing, the already busy day-to-day, now has additional challenges. I’m a remote teacher, for 5th grade students, which is a full-time job, in and of itself. Add to that, having a child with special needs home from school, who also needs to keep up with schoolwork and you have an extremely stressful environment. I pray every morning that I make the right decisions, teach in a way my students need, and can also be a great mom.

Don’t get me wrong, I absolutely love having my girl home with me. The trouble arises when I’m in a live zoom with my students and she inevitably needs attention. Faith has become much more self-sufficient , especially in the past year. She’s 14 years old now, so now more than ever, I try to teach her to do things for herself. Having said that, there are times she needs needs help with certain tasks.

If you haven’t read my previous posts, Faith has Down Syndrome and is very smart but non-verbal and not 100% potty trained. She’s come a long way and improves all the time. But there are times she needs her Mommy. I usually allow her the opportunity to ‘figure it out’ on her own first. But when I hear her noises of frustration, I know all too well, I know it’s time for me to intervene.

The problem is, if I’m in a live zoom meeting with my students, I can’t just walk away. My heart breaks and I immediately grow anxious as I hear her grunts and yells, from the other room. When that happens, it’s most often because she needs help on the potty or got into something in the kitchen (one day she discovered the garbage disposal button). If she’s TOO quiet, I worry as well. There have been times she just decided to leave the house. That of-course is emergent. So, on any given day, I need to quickly assess the type of noise she’s making. Being non-verbal, she makes a variety of sounds and over the years, I’ve learned to ascertain the meaning of each. During those times that Faith is struggling, I have to decide what to do. Do I cut my lesson short? Can I trust 5th graders to behave and stay on task if I were to walk away from the computer? Do I allow her to struggle, continue to squelch my guilt and keep teaching? Admittedly, I’ve done all of the above at different times, depending on the level of Faith’s calls for help.

It’s torture to have to choose my job over my daughter, or vice versa. I hate to ‘ignore’ my daughter, but I also feel guilty to leave my students given the fact that this is a difficult learning situation for them, and they need me as well. When all is said and done. I can only do what my heart says is best at the time. My daughter has Down Syndrome and needs assistance in the bathroom or can get into a dangerous situation.

For the most part, my days are, although busy, for the most part, successful. Typically, I can get Faith occupied with a puzzle or two, or even an episode of Dora, Mickey Mouse Clubhouse or the Doodle Bops, while I’m teaching. I also learned quickly, into our remote learning, to take our potty breaks before I go on my live zoom lessons. There are times I bring Faith to the computer to wave to my students or take part in our virtual Science experiment. In that case, not only am I killing two birds with one stone, but it’s good for all involved. It becomes a great opportunity to create Down Syndrome Awareness for my students and Faith benefits from the Science lesson. I have recently added a 2-3 minute Sign Language mini-lesson for my 5th graders. Again, I’m involving Faith, and spreading awareness. My students LOVE it! Win-Win!!!

Then, during my lunch break, everyday, I work with Faith on her skills. On this given day, pictured here, we used our ‘piggy bank’ (in our case dog) to sort and count money. Then used Boggle Jr. to practice our reading, spelling, sign language and speech. As you can see, Faith loves it!

Faith was so proud, she took this picture herself.

The bottom line is, all we can do is our best. Some days we fall short. Other days we can pull it off without a hitch. I’m working on, not being so hard on myself and I recommend you do the same.

We are living in crazy, stressful times. The key word is WE. Many of us have similar circumstances, trying to work from home while homeschooling our kids. Find relief in venting to your friends in similar situations. Make time for yourself to de-stress. Hopefully, this post at the very least, helps you to realize you are not alone. Working from home and being mom is a tall order, but we need to play our best hand given the cards we’ve been dealt.

So, to all the other “Special Needs Moms” out there, you are doing a terrific job! Believe in yourself. And always remember to Have a Little Faith.

Have a Little Faith

I’ve been so excited and just had to share my lifelong ‘dream come true’ with all my followers! Announcing my first, published children’s book, Have a Little Faith, about my daughter with Down Syndrome!

If you’ve read my previous posts here, you’ve already heard about the ups and downs of our special life. Many posts have been very honest about our day-to-day struggles. But, there is equally as much, if not more, about our special needs children to celebrate! I wanted to share my sweet girl and her many accomplishments, in hopes of promoting Down Syndrome Awareness and encouraging all children to believe in themselves.

This delightful book is about a young girl with Down syndrome who lives her life enjoying many of the things that all other children enjoy doing. The book is open about the challenges she faces and ensures readers that beyond these day-to-day obstacles she is just like anyone else.

Book Signing

During these crazy and uncertain times, we took precautions. Hand sanitizer pumps were at the door, the number of people were limited in the store, everyone maintained distance and wore masks (only pulled mine down for a couple of pictures and everyone was far away).

My husband, John, is so supportive of my writing!

I feel truly blessed that the local bookstore hosted our event, the weekend after Thanksgiving. My girl was so excited about the book and seeing her pictures inside and on a giant poster! Not only did she thoroughly enjoy our event, but many lucky visitors got an extra special book with Faith’s signature as well!

My girl!
Great OT practice signing her name dozens of times!

Please check out my website and subscribe for links to purchase, press releases, events, announcements and information about my upcoming books. https://www.ginapanzinolyman.com

Faith and I are only two people experiencing and enjoying life. Our wonderful children are all different and wonderful in their own unique ways. My hope is that you may resonate with some of what I say. As always, I’m here to promote Down Syndrome Awareness and to provide support, and encouragement for all. So, to all the other “Special Needs Moms” out there, you are doing a terrific job! Believe in yourself. And always remember to Have a Little Faith.

Special Needs Teens

My daughter, Faith, is now 14 years old. I find myself reminding people all the time that she is, in fact, just like other teenagers. And in many ways, she is. However, she has Down Syndrome, and that comes with its own list of challenges, in addition to the typical teenage issues.

Having an 18 year old son, and having been a teacher of middle school children for many years, I feel as though I know a thing or two about teens. They are trying to find their own way, often rebelling against authority figures, such as teachers and their parents. They are hormonal and emotional and wanting to become adults. Their focus is on themselves and their social life, trying to understand who they are as a person. What their friends think is more important than what you, their parent thinks, in most cases. Not to say all teenagers hate their parents, just the opposite. They want and need your love and approval, whether they want to admit it or not. But they certainly don’t express their love for you in the same way as when they were younger. It’s usually not even on purpose. It’s just that teens are often on the defensive or quick to defend their rights and trying to forge their own way. Battling for their own independence. So, as hard as it may be, we cannot take it personally.

In the same way, teens with special needs are also trying to figure out who they are as a person. They too, are hormonal and will rebel against their parents, wanting to do things their own way and in their own time. They too, want and need their independence. And they desperately desire your love and approval.

The difference is, they do have special needs. Depending on their specific diagnosis, those needs vary greatly. In my case, my daughter, Faith, has Down Syndrome. She is very smart and understands most of everything she hears, but is nonverbal. She is unable to say what she thinks or how she feels, with words. She does use some sign language and will point or grunt or make various noises to get her point across. In school, she uses a speech device that she can tap various icons of what she wants to say and the iPad will ‘speak’ for her. Although, that works in school, she doesn’t like to use the device at home. This presents a real struggle. It’s very frustrating for her… and for me.

Over the past 14 years, I have learned her ‘ways’. I know every sound and facial expression and have come to understand what each mean to Faith. Interacting with other people in her life, however, it’s much more difficult for her to make people understand what she thinks and feels. When her hormones were thrown out of wack, it became more challenging. Although knowing what typical teens are like, I realized quickly that she is just like other kids during puberty. The mood swings, stubborn behavior (more than usual), acne, growth spurt, etc.

What I have learned so far is that patience and understanding are key. She is changing and growing in ways she doesn’t fully understand. She needs to adhere to the rules and expectations of proper behavior; respect, kindness and following directions. But now more than ever, she needs unconditional love and acceptance. I cannot imagine her frustration, literally being unable to speak her mind or express what she is feeling. I may be able to surmise since I’ve learned the meaning of her gestures and sounds, but my heart aches to hear her speak to me and have a mommy-daughter conversation.

We make the best of it. We are very close and loving. So times she’s grumpy, I understand and give her her space. Other times, usually soon after, she will still sit on my lap to hear a story and hug and kiss me. We, special needs moms, are honored with having the most important job in the world. We are the person who loves our special babies more than anyone in the world. We are who they lash out at when they are angry. But we are also who they turn to in time of need. We are their biggest cheerleader and strongest advocate. We have endured medical issues, IEP battles, therapies and helping them to learn as they grow. We have overcome more than most. Mark my words Moms, we will get through the teen years.

So, to all the other “Special Needs Moms” out there, you are doing a terrific job! Believe in yourself. And always remember to Have a Little Faith.

My daughter is Non-verbal. And she CAN Read!

She can read!

Having Down Syndrome automatically puts my daughter in a negative light, in some minds. People are unaware of the potential of someone with Down Syndrome. They truly don’t know any better. You don’t know what you don’t know. It’s our job as parents, teachers, family members and friends of a person with Down Syndrome to educate those who are ignorant. That’s why Down Syndrome Awareness is so close to my heart.

What parent doesn’t brag about their children’s accomplishments from time to time?

We should be no different. Brag your child with special needs! Down Syndrome Awareness is an effort to educate people that don’t know someone with special needs, so that our children gain respect and have more opportunities in their future.

My daughter is non-verbal. That does not mean she’s less intelligent that a verbal person with Down Syndrome. But unfortunately, the perception is just that. If you spend any amount of time with my daughter, Faith, it will become very clear to you just how smart she really is. She understands everything you say to her. And you can see those little wheels turning in her head as she is thinking about and decides how to react to what you just told her. It’s quite adorable, actually. Yes, I’m biased, but that’s the mommy-pride. And that’s okay.

She wants to learn. She gets so excited to show me she knows the answer and that she can follow directions. She loves to be a helper!

Once I noticed that she had the receptive knowledge, I knew I could tackle the next milestone. I started with picture cards when she was very young, like most moms do with their toddlers. “Give Mommy the bear”, I’d say. And with 8-10 pictures laid out in no particular order, she would scan her choices and quickly give me the bear. The pride and joy that came with that first moment of realization that she in fact understood, and more than even I gave her credit for, was enormous. I gradually increased the amount of cards on display and she rose to the occasion. After Faith mastered pictures, and colors, I moved on to words. And as a mom who is also a teacher, I starting using grade level sight words. I began with Kindergarten words that also had the pictures with the words. Every time she mastered a set of flashcards I progressed to the next grade level. Quickly she showed an interest in words without pictures. You can see here, Faith was very young, about 7 and was already recognizing words without pictures.

Don’t let them get stagnant. Keep progressing to another level once you’ve seen mastery.

She chooses to practice her reading. It’s one of her favorite games we play. She gets excited and takes pride in showing off her skills. As I sit and write this now, Faith is 14 years old and in 8th grade. She has mastered third grade sight words on flashcards and we are working on 4th grade. She also loves Boggle, which we’ve adapted to her needs and current level. She matches the correct letter of the cubes to the word on the card and spells each one as we sing and cheer or act them out. Such fun!

***Side Note*** This is one of her ways to communicate. Just think about how frustrating it is for your non-verbal child, when they cannot express what they want or need. Words on index cards can help them communicate, besides practicing their reading. In addition to signing, Faith gives me a card that says chicken, when she wants her chicken strips.***

I’ve learned that the more she gets challenged, the happier she is and the more she accomplishes. However… Let us not forget timing. Timing is everything. If your child is anything like mine, they have a stubborn streak. Let them go at their own pace. Like any child, if they feel forced, they will object. Remember, you KNOW YOUR child. Trust your own instincts as a parent.

And remember, it is ‘our job’ to educate people who don’t have the pleasure of knowing someone with Down Syndrome. Especially when your child is non-verbal, don’t accept the mis-guided thinking of those who underestimate their abilities. Our children want to learn and are capable of more than we all realize.

In my children’s book, Have a Little Faith, I show how capable children with Down Syndrome are, promote acceptance of children with Down Syndrome and encourage all children to never give up when things are difficult.

So to all the other ‘Special Needs Moms’ out there, you are doing a terrific job! Keep the ‘Faith’.

Having a child with special needs, changes everything!

My girl!

As parents we are relieved when our children graduate out of a developmental stage.When your baby rolls over on her own, babbles her 1st sounds, begins somewhat solid foods, crawls and takes her first steps it’s a reason to celebrate! You are elated, filled with joy and overwhelmed with pride.

We all want our children to be healthy. But, how do we cope when they’re not?

We all want our babies to learn, grow, and succeed. But, what happens when they don’t?

When you’re child has special needs, all of those milestones happen at a much slower pace. When Faith was born, I happened to have friends and family members with children of a similar age. As the other moms watched their children sit up on their own, I was changing Faith’s feeding tube and giving her heart medication. When the other moms were encouraging their babies to practice tummy time or crawl towards them, I was bringing my daughter to have open heart surgery. I was constantly watching other children thrive, achieve, and progress week by week, month by month. And because they were family and friends, and I love them, I was happy… for them. However, I felt sad for me and my girl. It was near impossible to prevent my heart from sinking. I remember crying a lot during those years when my daughter, Faith, was very young. It’s a hard pill to swallow. My heart was filled with so much love for her, and yet, I felt it breaking as I watched her fight and struggle to thrive.

As time passed, Faith proved everyone wrong. The doctors said she would never eat on her own, Faith took out her own feeding tube one day and just started drinking from her bottle. The doctor said she may never crawl or walk until one day I found myself chasing her as she ran down the sidewalk.

Yes, having a child with special needs changes everything! It has changed my views on life.

I realized… I have been blessed with a child who has special needs.

I watched her closely as she continued to grow and learn, and tried my best to help her reach her milestones. What I discovered was that I was actually learning from her. She taught me to never give up, every time she struggled yet persevered until she mastered the task. She taught me patience since it took her longer than most children to acquire a new skill. She taught me how to adapt because things often don’t go as planned. She taught me to trust in the fact that she would succeed. I ultimately learned that with her drive and my constant support, how could she fail?

My daughter has Down Syndrome.

She’s smart, funny, sweet, thoughtful and loving. We are now at the point where the young child struggles have been replaced with teen issues. I am up for the challenge. And I know that we, together, will adapt, discover more, acquire new skills, achieve our goals and continue learn from each other.

So to all of the other moms with very special children, trust in the power of your love and dedication and believe in your child. Remember, you are doing the best that you can. Keep the faith!

Life Skills Are Fun!

Learning by doing!

My baby girl loves to be Mommy’s helper!

We all want to feel needed. We all want to feel like what we do day to day is important. Many of us love to help others. And children with Down Syndrome are no different in that respect. Faith is a people pleaser, like her mama. She’s taught me that household chores can be fun. When I see how she delights in helping and receiving praise for a job well done, we actually enjoy doing our chores together.

You can see here, Faith’s favorite chores. She loves doing laundry. There’s a specific procedure to follow and she is ALL ABOUT ROUTINE! She learns by watching and doing. I always talk to her and explain, over and over what the steps are for the task. “We get the dirty clothes from the hamper. Next we put them in the washer. Then we add the detergent. Finally, we close the lid and push start.” I say it every time and allow her to do it as much by herself as possible. It also builds her vocabulary in the process, which is a bonus! Of course, I provide lots of exaggerated praise and compliments, which in turn encourages her to keep doing more for herself.

Faith also loves washing dishes. Actually washing, although often playing with the soapy water interests her more than the dishwasher. But hey, whatever works, right moms!?

Juicing is her most recent ‘chore’. As I chop fruits and veggies, Faith puts them in the juicer. Then she gets to push them down with the attachment as I turn it on. We laugh and cheer at the loud noise. Best of all, it’s jam packed with various nutritients, and she drinks it because she took ownership and felt proud helping. It’s WAY better than store bought… Mom Win!

Life skills are so important for children with Down Syndrome. These are skills that teach her how to be self-sufficient and are tasks she will use the rest of her life. My primary goal, other than keeping her healthy and happy, is to teach her how to be self-sufficient. Isn’t that what all parents want for their children? We want our children to learn how to do things for themselves, to learn, to grow and to experience success. Faith is so proud of herself when she’s doing the big-girl chores. You can tell by the huge, beautiful smile on her face!

So to all the other ‘Special Needs Moms’ out there, you are doing a terrific job! Keep the ‘Faith’ 🙂