Guest Post, Author at Cedars Story

Daycare and Down Syndrome Concerns to Consider

May 6, 2019 by Guest Post 2 Comments

Daycare and Down Syndrome Concerns to Consider

What is a parent to do when working outside the home is a necessity? When you have a special needs child, in this case, one with Down Syndrome, there are some concerns you should consider when choosing a facility for your child. We spoke with a New York based physical therapist who has 22 years of experience and he shared that with Daycare and Down Syndrome concerns to consider include a term he uses called “Container Syndrome.”

Jake Kreindler is the founder of the instagram account @getyourbabymoving and has some great points to share:

Babies with Down Syndrome have some unique challenges – low muscle tone, delayed milestones, and potential cardiac issues, to name a few. When it comes to getting your baby’s gross motor skills up to par, it goes without saying that parents need to be vigilant about making sure that the odds are stacked in their favor.

In my 22 years of practice, I have done numerous sessions with babies at daycare facilities and at babysitter’s homes. While most are caring and loving, they are frequently trying to take care of several babies at once. This leads to what I call “container syndrome” – placing kids in one “container” for long periods of time, to keep them from moving around and requiring more attention.

I have lost count of how many times I will enter a home or facility and see one baby in a playpen, 3 kids in high chairs, a baby resting in a swing, another kid sleeping in a carseat, 5 kids in exersaucers for hours on end,…..well, you get the point!

Babies, especially children with gross motor delays or tendency towards delay, like our precious babies with Down Syndrome, need lots of practice time on the floor. When in daycare down syndrome concerns include lack of floor time. They need the freedom to try new positions and milestones, explore toys, and observe their environment. Placing children in “containers” for long periods of time is holding them back from their potential and function.

Sadly, speaking to the staff rarely yields changes. Changes need to come from the directors, owners, and authority figures. As parents, you have the power to affect changes! Speak to the person at daycare with the highest authority and explain your concerns. Educate them on the importance of tummy time and time spent on the floor. And if you get nowhere with them, seriously consider another facility or option.

I need to clarify one point: putting a child in something for up to 15 minutes a day will not cause any harm. The harmful part is when the container becomes the babysitter!

So what can you tell the daycare to ensure that they ARE stimulating your baby’s physical development? Ask them to place the baby in his or her MOST AGE APPROPRIATE, SAFE POSITION. So if, for instance, your baby is a year old and can bear weight on her legs, even if she isn’t walking, ask them to stand her at surfaces with toys. Or if she is 7 months, but not yet sitting, place her in a sitting position surrounded by pillows in case she falls. If your baby is younger than 7 months, place her on her tummy as the default position. Reaching milestones require the brain to reach new levels of maturity. By challenging your baby with age-appropriate positions, the brain will provoke these new levels of maturity and help reach gross motor milestones.

Babies with Downs Syndrome are some of my favorite people on earth!! Education is the first step toward advocacy. Feel free to reach out to me at getyourbabymoving@gmail.com or on Instagram at @getyourbabymoving.

Jake Kreindler, M.A., P.T is a New York based Pediatric Physical Therapist with 22 years clinical experience. He is certified as a Level 3 Cuevas MEDEK Exercises practitioner. He has published numerous articles, educating parents on children’s development. His latest project on Instagram, @getyourbabymoving, provides parents with illustrated tips and tricks. His goal is to eradicate gross motor delays in babies across the world through education. He can be reached at getyourbabymoving@gmail.com or on Instagram at @getyourbabymoving.

In Case Your’re Down- Birth Diagnosis of Down Syndrome

May 3, 2019 by Guest Post Leave a Comment

There are many moms who will learn about a Down Syndrome diagnosis at birth, that is how our family learned about it too. Some of us will go on to advocate fiercely in hopes of easing the transition for those moms who come after us, when they feel shell-shocked, when they are scared. Andrea is just one of those amazing mamas hoping to help others, encourage moms and show the world that Down Syndrome is not as scary as we fear. She has created the most beautiful and touching video in the hopes that new families will see it and find immense encouragement. Her son Case, the impetus for her trailblazing is the light of her world. Here’s Andrea’s story and her brilliant video, please share it so that we can circulate the positive side of Down Syndrome.

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Tetrology of Fallot and Open Heart Surgery

April 9, 2019 by Guest Post Leave a Comment

Each parent who shares their personal story on this site does so in the hopes that another parent coming after them can find comfort, encouragement, hope, and a sense of community. It is by the sharing of what we go through that we can encourage so many others. This is one family’s journey through Tetrology of Fallot and Open heart surgery.

No parent wants to hear that there is something “wrong” with your child. At almost 14 weeks pregnant with baby number two, a 26-year-old me was told that there was something “wrong” with the ultrasound of my child. A blood test confirmed that our son has Trisomy 21, also known as Down Syndrome. About a month later we were told that there was something “wrong” with his heart. We knew that 50% of babies with Down Syndrome are born with a heart defect, but it was still not easy to hear this news. Especially when it begins our journey with a congenital heart defect, Tetrology of Fallot and Open Heart Surgery.

A trip to the recommended cardiologist’s office confirmed that our son has Tetralogy of Fallot. This basically means his heart had four specific defects, which I won’t go into details about. It was concluded that he would need open heart surgery. What wasn’t specified was whether it would be immediately after he was born or a few months later, no later than 6 months. This is a scary thought for any parent. However, it is important to remember that medicine has come a long way and although the thought of our little ones going through such a major surgery like that is painful, our kids deserve a fighting chance in this world. Thanks to new technology and a better understanding of the human heart and its functions, many heart defects are correctable. The life expectancy of a person with Down Syndrome has increased significantly in the last century. In the 1930s the average was about 9 years old. In 2007 it was 47. Today, the average life expectancy is 60! I believe that a lot of this can be attributed to modern medicine.

Leo had his heart surgery almost two years ago. We were fortunate enough to be able to wait three months after he was born to have the surgery. However, those first three months of his life felt like walking on egg shells. I was loving all the beautiful memories that we were making, but every step we took consisted of holding our breaths and hoping that we didn’t step on a shell. We were so careful these first months, trying to avoid a “blue spell”, which would land us in the hospital. We wanted him to grow as much as he could in order to give him the best chance when he went in for his surgery. I will be honest and say that it is still difficult to remember the events leading up to the surgery as well as his recovery in the hospital. There were definite setbacks, some minor ones and some that were very painful to witness, including having to reintubate due to a collapsed lung. I won’t go into more specific details. I do wish to offer some advice to any parent who has been given the news, either prenatal or after birth, that their child has a heart defect.

For starters, make sure you find a pediatric cardiologist who you feel comfortable with. In the future it will be important that your kid have a good relationship with their doctor too, but this will most likely start with you. At our appointment with the cardiologist I met two angels. One was the tech who did the sonogram. He made me feel like I could actually pull off being a good mother to my kids. The other angel was the doctor. She is the one that made this bad situation seem like it was good news. She said it was the best of the Tetralogy cases she had seen. I kept wanting to say, “You mean less bad,” but I went along with her mentality. I could tell that she would speak to us with re-assuring words in order to minimize the stress we were feeling. She knew that this was important, not just for us, but for our baby. I will not lie, there were appointments where she was blunt with the reality of the outcomes, but for the most part she made me realize that it was not the end of the world. When you hear that something is “wrong” with your child and you, yourself, cannot fix it, it can be demoralizing. The cardiologist reminded us that we were strong and wonderful parents, which was nice to hear after feeling like there was nothing we could do for our baby. For me, I think it is so important to surround yourself with people who will fill you with positive thoughts while you venture on this path, especially the doctors taking care of you and your child.

The second advice I would like to give pertains to the time during and after the surgery. Give your kids more credit. I can’t even describe what a champ my son had been through the entire pre-op and post-op processes. He exceeded all my expectations, which made me feel a little silly for thinking any less of him. These kids that find themselves with an open-heart surgery are so much stronger than we think. They are truly heart warriors. They are fighters whose bravery is something to look up to. Help them by continuing to hold on to hope that no matter how bleak the situation may seem, things can get better. Realize that it is a major operation, so it is important to find the patience to let them rest so that they can heal properly, even if it takes longer than anticipated.

My last, but certainly not least, advice is to not be afraid to hug or touch your little one while they are recuperating. Seeing them in a hospital bed with tubes sticking out from different places in their body isn’t easy and you may try to tip toe around to prevent anything that might make them move and become uncomfortable. There was a point where I did not touch Leo for a day or two because I didn’t want him to smell me and want breastmilk, which he wasn’t allowed to have yet. I think it was about day three when I broke down. My mother is the one who finally convinced me that touching him and being near him would be worth it. It was impressive how just a simple grasp of his little finger around mine made things take a turn for the better. I felt complete again and he started recuperating faster. We need their touch as much as they need ours. Don’t be afraid to get comfortable in a hospital room setting. The best medication is most definitely a parent’s love, which can come in the form of a small kiss or even asking the nurses and doctors when it will be okay to carry your child.

As I look over the events that occurred a year ago I want to say that things went our way. However, I stop because before we found out about Leo’s heart condition, I would not have pictured any of this as “our way.” Our plan was not to have a baby with Down Syndrome, let alone a baby with a heart condition that would need surgery. That being said, I think it’s important not to look at things as “our way”, but as the best way for us. For whatever reason, God put this beautiful baby boy in our path just the way he is, heart condition and all. He will need future surgery, hopefully minimally invasive, but only time will tell when. The only thing left for us to do is to take care of him to our best ability and continue focusing on the positive aspects instead of dwelling on the negatives or the “what-if” and “if only” scenarios.

My name is Lisi and I am 27 years old. My degree is in Industrial Engineering, but my real job is being a mom to two of the sweetest babies. My family is like the one from ‘My Big Fat Greek Wedding’ only Latin instead of Greek so my chromosomally enhanced Leo has been lucky to have so many people who have loved him even before he was born. You can follow along on Instagram @ourextraluckyworld

A Down Syndrome Adoption Story- Peanut’s forever family

April 8, 2019 by Guest Post 8 Comments

I think a lot of people assume we searched out a child with special needs. There are a lot of amazing families who do just that. Their hearts are aching to help those kids that others toss aside. That wasn’t our story though. I never imagined being a mother to a child with Down Syndrome.

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Tips for Communicating with Non Talkers and Non-Verbal Children

April 5, 2019 by Guest Post 2 Comments

I am happy to share some alternative methods of communication for our late talkers and our children who are not able to verbally communicate. There are many other ways for kids to successfully communicate! Using alternative means of communication is essential for our tiny friends. A communication system will allow your child to feel more closely connected to others, better engage with academic materials, and improve non-preferred behaviors.

Sign Language

Gestures and sign language are incredibly powerful for your child! When you provide your child with skills such as gestures or sign language, you are giving them the gift of communication. Many parents worry that teaching sign language will prevent children from ever learning spoken language, but in fact research shows the opposite. It has been proven that teaching sign language can actually improve children’s language and cognition. One of the first communicative milestones is learning that you must do something in order to get something. When you teach your little one gestures or sign language, you are teaching them that they CAN do something (e.g. sign ‘water’) in order to get something (e.g. water). You can start with 3-5 basic signs (e.g. more, give me, hungry, etc.) and add more as your child starts to use the signs consistently in order to communicate.

Pictures

Pictures are a great way to help your nonverbal child communicate. You want to start by using pictures of the actual objects in your house so that it is an easier association for your child. As much as cartoon images are cute – they are harder for our children to associate with the real thing. You can create a necklace of 5-10 everyday objects that your child may request throughout the day. That way, your child can easily flip through the pictures around their neck to tell you what they want. Additionally, you’ll want to place the pictures of the household items on the actual object so that your little one has many opportunities to associate the object and communicate with you. There are many picture systems that work wonderfully and your child’s SLP will know which one is best for your little one specifically.

Low Tech or High Tech Devices

There are a ton of different devices that children are able to use to express themselves. There are low tech options such as communication books or boards with Velcro pictures that children can pull to greet, label, request, answer questions, etc. There are also keyboards/alphabet boards that your child can use to type to communicate. High tech devices include tablets, Ipads, and other screened options with customizable buttons. These high tech devices use digitized or synthetic speech that acts as your child’s voice. Again, your child’s SLP will know which system will work best for your child based on their language level, fine motor skills, attention span, etc.

Overall, remember that none of the options above will prevent your child from verbally communicating! These alternative communication systems will only enhance your child’s cognitive abilities and language.

Molly Dresner is a Speech Language Pathologist and Feeding Therapist based in New York City. She believes that the more you know – as a parent or caregiver – the stronger you will be in supporting your little one’s speech and language development. To help you achieve this, her focus is on providing you with fun & functional suggestions.

She recently authored The Speech Teacher’s Handbook, an engaging parent guide that includes practical and easy-to-follow tips & activities to help you help your little one!

You can find her on Instagram @thespeechteacher where she posts daily pops of knowledge and connect with her on her site as well as Facebook.