Finding out your daughter has Down syndrome

Erick didn’t find out about her diagnosis until after she was born. 

Erick said, “Maybe five minutes in. I remember the doctor, she actually said “I don’t know but it seems like your daughter might have Down syndrome. I have a feeling from what I’m seeing.” My reaction was “okay, she can be wrong, or she can be right, but she looks healthy so that’s fine.” 

But then, when it really hit me was when I looked at my wife and I saw her face. She was freaking out, she was silent. She is really good at controlling her emotions, but yeah, I still remember her eyes when she looked at me and that really hurt. That hit me like a ton of bricks, that is when I realized yeah, we may have a problem here.”

Ongoing medical issues

Erick’s family was very supportive. They didn’t care if Erika had Down syndrome or not, the problem wasn’t her Down syndrome but her other health challenges. Erick explained, “The issue was that she was not digesting her milk. So basically, she was regurgitating constantly, and we were like “why is she doing that?” and she started losing weight and it got to the point where the doctor told us “Something is wrong.” 

He continued, “They ran tests, and they were pretty blunt, they told us “She might die.” Erika had a successful microsurgery that cleared a blockage in her duodenal passage that allowed the milk to be absorbed. She continued to have health problems as time went on. Erika developed something called Thrombocytopenia. Erick said, “there is this agent in the blood that she lacked at the time. That agent basically keeps you from bleeding through your pores. So, it seems like she had a little rash, when I reality she was basically bleeding at a microscopic level.” 

That has since cleared up, but she now has hypothyroidism. 

How their other children have been affected

Erika is Erick’s third child. Erick explains how Erika’s birth affected her older siblings. 

“Well Wendy was one year older than Erika was so Wendy didn’t understand. Wendy was born with Asperger’s. At the moment, we had no idea that she had Asperger’s. But Keira the oldest she was in love with her. I still remember she brought her this little plushie pink baby toad and it reminded me of her. When Erika was born, she had this pinkish hue to her skin, so we said, “Oh this kind of looks like you.” And we were always playing with her. But she loved her little sister and even to this day you know she takes care of her, and they have a good bond. It is a beautiful thing.” 

The joys of a Down syndrome diagnosis 

Erick said, “Everything collided in this harmonious way. A lot of things that were amiss, and situations with other family members, everything came together. She brought that type of harmony into our home and to this day she is the light of this house. She is always making us laugh, she sees that, and she is pretty intuitive. If she sees that someone is sad or something, she will approach you and do or say something just to make you smile. 

Advice for a parent with a Down syndrome diagnosis

Erick wants people to experience being with a beautiful person who is full of joy and love. 

He said, “If I were able to build a time machine I would go back and tell myself, “Brother you have won the lottery.” And I would love to tell people watching us right now that these children will bring more joy to your life than anything negative that you might be thinking in your mind. Let the fear go. Because this situation is only going to make you a better human being. It is only going to make your family come together as nothing else can. The moment that you don’t see your child even if it’s because you’re on a trip or a business trip or whatever, you miss them so much. 

He continued saying, “If you are a parent that is actually thinking that maybe you shouldn’t have this child and you are scared, which is normal, don’t be. Just let them come. They will change your life for the better. Don’t miss out on that opportunity because you will regret it if you do and as a friend I really hope that you don’t have to go through that pain, the pain of knowing that you could have been surrounded by a beautiful being that is full of joy and love and nothing will be able to basically supply that source of happiness and have that baby, take care of them.”

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My life is ruined

When Matt was 3 hours old, Wendy recalls her experience, “Yeah well so a lot of emotions, a ton of emotions.  I think every emotion known was going through.  I experienced um shock, fear, trauma, devastation, anger, what did I do?, um why me?, All of those because what I did know about Down syndrome I was afraid that my life had just been ruined.”

After a few days in the NICU Matt was able to go home.  Wendy shared what leaving the hospital was like, “The truth is by the time I left the hospital I had bonded with him..so we stayed in the hospital with him and I you know had a lot of time just he and I, when the nurses would bring him in to me I couldn’t see all of those abnormalities..all I could see was this perfect little baby.”

Proving the naysayers wrong

Wendy had one goal when she left the hospital: to prove the naysayers wrong.  She shared what goals and hopes and dreams she had for Matt.  She said, “So we walked out of the hospital doors and I had these goals, he was going to drive, he was going to work, he was going to get married, he was going to finish high school, he was going to date, he was going to do all these things.”

After 32 years Wendy shared, “He’s done things that even I, I’ve underestimated in my own son you know.  But at the same time we had to shift those goals and dress that I have for when I walked out of the hospital, we just created new goals and dreams.”

Fighting the school system

One of the hardest things Wendy had to do for Matt was fighting to get a good education.  She explained that while she wanted him to be mainstreamed she understood that Matt needed a different approach to learning.  He attended a cluster classroom.  The downside to the cluster classrooms was the inconsistency.  Each year the cluster classroom would switch locations.  

Wendy said, “So for us the cluster worked well. It was just unfortunate that it moved from school to school and so every year it was him getting to know a whole new set of other students and teachers and staff.”

The cluster classrooms weren’t the other issue Wendy and Matt faced while working with the school system,  She said, “They even went as far as trying to guilt me into backing off because my request was taking away from another child’s need.” 

It would take too long to talk about the joys

Wendy said “..there is joy in everything you know we celebrate.  I did not know this life would be a life of celebration.  We celebrated when he learned to tie his shoes, when he learned to button up his pants..there are hoys in watching him accomplish what he wants to do..you can’t even pinpoint all of the joys.”

“You’re in for a wonderful ride, you know this, I know it’s hard to believe this right now but trust me this life is going to be amazing.”

Finding a great man

For many years Wendy was a single mom.  She felt as if she would be alone forever.  She was hesitant to date anyone for fear of rejection for both her and Matt.  However, once she accidentally met John their lives changed for the better.

“John is awesome, he came into my life just when I needed him and when it became serious and I felt brave enough to introduce him to matt..I mean we’ve been together for a good 25 years nd so he and Matt are like buds..they just go hang out..i just love watching how he treats my son.”  Wendy shared.

Writing a book from life experiences

Wendy took all of her life experiences and situations and was able to write them as a book to help other parents going through what she did.  She said, “Every chapter is a story and it’s a situation he’s put me in whether it’s embarrassing or in a learning opportunity..so what I’ve done is tried to make it a book of humor because in this life we need to laugh.”

Wendy’s book is called, ‘Big People Don’t Pee in the Park: A Mother and Son’s Journey with Down syndrome’.  It was published October 3 2023 just in time for Down syndrome awareness month.  

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Sister are Best Friends

Finding Out Your Sister has Down Syndrome

When Candace’s mother was pregnant with Angelita she knew something was different.  Candace recalls her mother saying, “I can’t explain it, I just knew something was a little different.” Even though she had a feeling that something was different, Candace’s family didn’t find out Angelita had Down syndrome until she was born.

Upon hearing this news, Candace said, “..my mom always said, ‘She has Down syndrome, but she is still the same and I want you to treat her exactly the same.” 

Sticking Out in a Crowd

Candace described her family as being abnormal.  Where she grew up, it was common for families who had children with disabilities to hide them.  She said, “So, when we would see someone we would be like, ‘Wow! Someone with Down syndrome.’ Because we weren’t used to it.”

When Angelita was born she had some technical dependency.  Candace said, “So that was different, going to elementary school and my mom having to drag all of her machines with her because she was on a G-tube and oxygen.”

“Forget You Had Her”

When Angelita was born she was very ill, for the first six months of her life her family didn’t get to see her.  Angelita was flown to a different hospital that could better suit her needs.  Candace said, “When she was born, the doctors told my mom, ‘Why don’t you just forget you had her?’ That really upset my mom.  She said, ‘I’ll forget I met you.’ They gave her my sister wrapped in her own IVs.”

A nurse from the hospital saw that interaction and contacted a different hospital.  Candace’s mom and Angelita flew with nothing but the clothes on their back to the hospital and stayed there for six months.

Glass Child Syndrome

Sometimes, when a family has a child with a disability, the needs of the child with the disability are so great that the parents look right through the other child’s needs to take care of the child with the disability.   

In reference to the glass child syndrome, Candace said, “..we came from such a big family it was more of a buddy system.  We didn’t have my mom being super attentive to come child because she has so many.”

Angelita is a Celebrity

Candace remembered that her friends knew Angelita was a little different.  She said, “Mainly because my mom would take us to school and when she would take Angelita out of the car, it was a whole process of taking machines and the oxygen machine on wheels.”

“So, everybody grew to love her, and she just grew into the community.  Everybody knew her, all of our neighbors, everybody at church, everybody at school.  It was a community around Angelita”  Candace said

Best Friends

Candace shared some of the things that make Angelita and her best friends.  She said, “I saw she is my best friend; she always tries to sneak away with me when I go home..We’ve been in a Flamenco class together..we hangout, I teach her the sassy comebacks.”

“I hope she comes to live with me.  I want her to come live with me..but several siblings are fighting for her.”

“She is Going to be a Chef”

Angelita hasn’t let anything stop her.  Candace said, “She is still in school. She is in culinary school..she is going to be a chef.”

Candace ultimately would love for Angelita to finish school and then come live with her as her mom is getting sick.  She wants Angelita to have opportunity and resources.  Something that Candace now does as a career.  She helps families access resources in their community.

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Cathy and Brian found out their child had a possible diagnosis of Down syndrome at her eight-month prenatal ultrasound check, when during the ultrasound the doctor spotted some blockage in his intestines. They were told that one in three babies with this blockage have Down syndrome.

The Ultrasound Revealed an Intestinal Blockage

During a routine ultrasound the doctors detected an intestinal blockage called duodenal atresia. This meant surgery as soon as Cole was born. “In the course of preparing us for that surgery, one of the doctors had said ‘you should be aware that 1 out of 3 babies born with this blockage has Down syndrome’.” Cathy said. “So, we knew that our odds had gone up pretty dramatically. I was an older mom. They had done different tests and had been watching. They hadn’t detected anything up until that point.” Cathy and Brian found out that Cole had Down syndrome after he was born.

“It Was Very Difficult to Say the Words Out Loud”

Cathy and Brian found out that Cole has Down syndrome at his birth. “It was tough. The doctors laid out a lot of things and it was very difficult.” Brian said. “We married later in life, we have our first born and we were just excited about it. Then to get that diagnosis was very tough.”

Someone told Cathy that this was a gift from God but at that moment she wasn’t ready to hear that. “It was very difficult at the beginning even to say the words out loud as you’re telling your family and your friends. I remember wondering if I’d ever be able to talk about it without crying.”

Talking About it with Joy Took Some Time

It took a few years for Brian to be able to feel joyful about Cole. “When Cole was born, I felt a sense of responsibility. I felt a sense of duty to raise this child the best I could. But I viewed it as a project.” Brian said. After a while Brian really started to see Cole’s personality. “I shifted from a responsibility to really embracing and loving Cole for who he is.”

Cathy found it helpful to talk to other people who were in the same situation. “In my position, in Congress, I had a lot of people, hundreds of people that were reaching out across the country. And even in other countries around the world, through emails and cards wanting to be encouraging.” Cathy still has and cherishes the notes. “They wanted me to know, and wanted us to know, that it was going to be a positive. That we were going to find a lot of joy in our son, and it’s very true.”

Other people also reached out to Cathy and Brian. It was very healing to talk with other people who understood. “Who had been there, who had experienced the same feelings and emotions, and had gotten to a very positive place,” Cathy said.

The Joys of Having a Child with Down Syndrome are Real

“For me, I feel like Cole has just kind of taken some blinders off my eyes. I see every person very differently and it’s the difference between having head knowledge and now a heart knowledge as to the value and the potential of every life,” Cathy said. “Having a son with Down syndrome, it has been very much a positive.” Cathy and Brian celebrate each of Cole’s successes and every developmental step. They find joy in watching him reach his potential.

Finding the Right Way to Challenge and Support Cole

“I think the most difficult thing with Cole is that he is on his own trajectory. I keep wanting to compare Cole’s trajectory with the typical trajectory, but they are different,” said Brian. “So, I’m always trying to find out if he’s being pushed too hard, or not enough, and what’s appropriate for him.”

Cathy and Brian have discovered that Cole is more typical than different. “I never want to underestimate him,” said Brian. “He’ll surprise you.”

Cole also wants to be like other kids, and he’s very competitive so that’s another challenge they face. “He wants to be able to play basketball with other kids, and he’s really good, but not quite as fast or as quick as the other ones,” said Cathy.

A Typical Day in the Life of Cole

“Well, I would say Cole’s typical day is typical of any fifth grader,” said Brian. “We’re up in the morning and we do a little school work, breakfast and then we are pushing him to get his teeth brushed.”

They walk to school and after school he’s usually outside playing with his sisters, and after dinner he does homework.

They Gave Some Thought About Having More Children

Cathy is the first member of Congress to have given birth three times while in office. After Cole was born, they gave it some thought as to whether they would have more children. “The odds of having a second child with Down syndrome are pretty slim. I believe it’s just 1% more that the odds in general,” said Cathy. “I had known a couple of families who had more than one child with Down syndrome…so it certainly was in the back of our minds.”

They wanted more children and decided they were ready for whatever happened. Cole now has two younger sisters. “It is my hope that they are going to be fierce champions for everyone and those with disabilities,” said Cathy. “They love their brother; they enjoy playing with him. They are all very competitive and my hope is that they continue to be a fierce defender and champion for him and so many others who have disabilities.” Cole has been a positive impact on his sisters.

Researching Down Syndrome is Important

Cathy emphasized the importance of “telling the world… of more research and what it could mean, not just for those with Down syndrome, but for millions of other people.”

“About half of the kids born with Down syndrome are born with a hole in their hearts but there aren’t any cases of heart failure or heart attacks. People with Down syndrome also have a higher incidence of Leukemia but not other kinds of cancers. Nearly all develop Alzheimer disease too. Research into Down syndrome would not only help those with the syndrome but provide answers for many other people too” said Cathy.

Demanding Schedules and Three Small Children

Brian retired after 26 years as a Naval Commander and Cathy is an eight-term member of the U. S. House of Representatives. They met after Brian retired from the Navy, and then they married and started a family. They both have demanding schedules. “Brian makes it possible for me to serve in Congress…He’s sacrificed a lot to be home with the kids, day in and day out.” said Cathy. “Yet, he does that to make it possible for us to do what we’re doing.”

“Life is life. Everybody has things going on. You make it work and I think things have worked out well. We certainly had challenges, along the way.” said Brian

They Are Both Advocates for Those with Disabilities

Cathy and Brian are passionate leaders in helping people with Down syndrome get meaningful employment. “What we want to do is get those individuals employed, and with employment there comes a plethora of positive things from social interactions to a paycheck,” says Brian. He wants companies to see that a person with Down syndrome can make a positive difference and can contribute to the company.

Cathy has served as the Chair of the House Republican Conference and was recently appointed as the Republican representative to the United Nations. She has sponsored and passed several key bills that positively affect people with disabilities. She is currently working to pass a bill, Transformation to Competitive Employment Act. “My hope is to continue to move society to see the ability that every person has. They may have a disability but to really focus on the ability and what the individual can offer,” said Cathy. “The goal of this legislations is to phase out that subminimum wage and to move these individuals into minimum wage positions.”

There are more organizations now that are focused on helping people with disabilities to get meaningful employment and to help them with education and training. They are also working with employers to help bridge the gap.

Cathy and Brian Offer Advice to Other’s Facing A Down Syndrome Journey

“I would say that the journey is going to be a little different, but it’s going to be a good different, a positive,” said Brian. “You have a very beautiful, young child that has a bright future. Invest in them like you would any child and you are going to see the fruits of this wonderful, little relationship.”

“The fear of the unknown is what is overwhelming in that moment. Go talk to other people, don’t make an isolated decision. Educate yourself,” Cathy said. “I remember when we go the news about Cole, that so much of it was focused on the negative. It was focused on what health issues he may have or other challenges. Rather than really being told what the potential was.”

“Cole has exceeded all expectations. I’ve learned not to put limits on this guy. He’s an amazing kid. He’s very personable, he’s very active, he loves to make you laugh,” said Cathy. “I’m so grateful that Cole has had this influence on my life and, even though it’s not what I had expected or dreamed, it is very positive.”

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Turning Fear of Adoption into Faith

Choosing Down Syndrome

It took Sarah and Jeremy many years to decide it was the right time to bring Maria into their family. She is from Yerevan Armenia. They had always wanted the opportunity to adopt, but family circumstances always seemed to get in the way. However, they finally decided it was something they needed to do.

Their oldest son had open heart surgery when he was a baby, heart conditions are something that is particularly tender to them and they wanted to help another person with that same problem. Upon doing research they discovered that heart conditions are common in children with Down syndrome.

“That’s your Daughter, Go Get Her”

Sarah and Jeremy would look up listings of children eligible for adoption, Sarah had this to say about the first time she saw Maria, “I had seen these faces before over the years and they are always just so cute and you want to adopt them all.  Bit something was very different when I saw Maria’s face, and it was as if God told me, ‘That’s your daughter, go get her.’”

Jeremy also mentioned, “Sarah walked in and showed me the picture and I said ‘yeah lets do it.’…I was just excited.”

The Adoption Process

Adopting a child can be very time consuming and tedious.  Sarah explained, “The process go very long and very challenging…you have to sign up for classes and take certification courses.  We just took it one step at a time, which is all we could do.”

She then continued by saying, “Knowing your daughter is in an orphanage overseas and she’s not with her family is hard.  We just did everything in our power to push things as fast as we could on our side. When you’re sending things off and waiting, you just have to hope that other people getting it are going to process it and get it through quickly.”

Finances Involved in Adoption

How much money is this going to cost? How are we going to pay for this?  These are some common questions people ask when they think about adoption.  Jeremy had this to say about it, “We just looked at our finances, and we re-financed our house, we did some fundraisers as well as some auctions on Facebook. Social media is a great way to raise money when you have that goal and you have that child that’s waiting for you.”

Sarah later added, “These children are worth any cost it takes to get them into your home.”

Room for One More

When recalling the impact Maria has had on their family Sarah had this to say, “It’s really life changing and it has changed our family for the better.  I love that our boys had this experience..being able to see them alongside her and love her and help her”

“The first time I saw her, I felt like she was already our daughter.  She integrated in with her brothers without missing a beat, it was just a rather joyous occasion..I can tell you from the personal experience that I’ve had..that this is a wonderful way to grow your family.” Jeremy said.

“Take that Leap of Faith”

Jeremy had some wonderful pieces of advice to other men contemplating adoption, he said “It’s important to be a dad in this world to our own biological kids and also to kids that aren’t as fortunate enough to grow up in their family.  For men we are on the fence and who maybe are not feeling that emotional draw to do it, I would just tell them to take that leap of faith and you won’t be sorry that you did.” 

“As men we have a responsibility to be protectors and providers.  I really believe that all of the children out there that don’t have men in their life, we have a great opportunity to be that somebody.”

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Paradigm Shift

NIPT Saved His Life

While some people argue that the NIPT is a basis for some to have an abortion, Tamara, credits the test to saving Greyson’s life.  She said, “We’re lucky we took the prenatal test..that test saved his life because we wouldn’t have known that there was a possibility that he had Down syndrome and we wouldn’t have been checking him so frequently.”  

She continued, “Because I was high-risk I was going in once every week.  I would do a stress test and then they would do an ultrasound just to check growth and they realized that during the ultrasound he was showing restricted growth..they sent me to the hospital right away.”

Coming Six Weeks Early

After monitoring Greyson for a few hours, they decided to send them home.  Tamara knew something wasn’t right. She recalled, “I said something was off and something didn’t feel right and they decided to do another ultrasound before we left the hospital and sure enough it was not a stable environment for him to be there.  He needed to be born immediately so I had an emergency c-section. Greyson ended up coming six weeks early.”

Matt described the event as, “it was scary you know to see my wife and son go through an early birth.”

The Official Diagnosis

Even though the NIPT had given Tamara and Matthew a strong likelihood Greyson had Down syndrome before he was born, they had to wait a week for an official diagnosis.  

Tamara described that experience as, “I remember I was laying here with Greyson on my chest and I think I cried as hard as when I first found out the results of our screening test and it was maybe for like 20 minutes and then I was like, ‘What am I crying about? Like this kid’s amazing and he’s here and he’s everything that i didn’t even know i wanted, and ever since then, things have been amazing.  He’s the best.

“You Can’t Have a Bad Day”

Now, at 18 months, Greyson’s personality is shining through.  Matthew said, “Every single day he shows us a little more of his personality, a little more of what he can do and were just kind of taking it in day by day.” 

Tamara said, “this kid’s always happy, he wakes up smiling.  More people should be like that in this world, because if we had more people like him, the word would be a better place thats for sure.”

Exceeding Expectations

Being born early, Greyson was very small.  He weighed only four pound eight ounces. Doctors predicted it would take several years for him to catch up.  However, Greyson has surpassed that prediction and is doing extremely well.

Typically, children with Down syndrome have weaker immune systems.  Greyson, once again has exceeded that expectation. Tamara said, “Greyson’s been super healthy, he’s had one could and one year and he fought it like a champ.  There really were no issues..he’s a healthy kid and he’s no different than anybody else’s kid.”

Overcoming the Fear

Before they received the results of the NIPT, Tamara and Matthew weren’t familiar with the world of Down syndrome.  They didn’t understand why parents wouldn’t choose to change their child.  

Now, their perspective has changed. Tamara shared this, “When you see people with Down syndrome youre going to hear them say things like ‘I wouldn’t change a hair on their head’ or ‘I would do this all over again’ and you think that we are all crazy, but I promise you will get to the point that we’re at.”

Matthew added, “You know there is going to be hard times, have faith.  It’s definitely going to be a big growth experience for the better…if we could have control in this life, we wouldnt change one thing”

Find Support

Like many other parents, Tamara and Matthew both agree to find support.  Find other parents who are familiar with your child’s diagnosis. Matthew said, “Join a community.  In this day and age where we have social media like Orange Socks or any other facebook group, join that community and dig in, ask questions and just dive in and there’s going to be really hard days but when that kid comed it’s really going to be a joy”

Tamara shared her final thoughts as, “You can learn from different moms what kind of therapies they are going to as what kind of toys are best for your kids and what’s working and not working for feeding and learning how to crawl and how to sit.  There are so many resources, you’re not alone, you’re never ever alone.”

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Choosing to Keep Her Home

Doctors paint a grim prognosis

When David and his wife found out that their daughter had Down syndrome, they were told, “She’s not going to be able to walk, and she’s not going to be able to feed herself.” While giving them a grim prognosis, they encouraged them to place Sharmi in a state institution.

Sharmi’s mom replied, “No, she’s my daughter; I want to take care of her.”  That is just what they did. They helped Sharmi learn basic life skills, and helped her accomplish things the doctors said she never would.

Siblings help raise sister with Down syndrome

Valerie is one of Sharmi’s siblings.  She loved participating in helping take care of Sharmi.  She said, “She was our baby sister, and what little girl doesn’t want to help with a baby in the family?..We all helped take care of her, and we spent a lot of our playtime, especially when we were younger, playing with Sharmi.”

It was through all of this playtime that Sharmi learned how to walk.  David talks about how his children would lay on the floor and take Sharmi’s feet and walk her around the house.  

Creature of habit

Both David and Valerie lovingly recalled how Sharmi was very particular with the way things were done.  Valerie shared, “We would have popcorn on a Sunday night and watch ‘The Wonderful World of Disney’. If Dad hadn’t got the popcorn popper out by then to start popping popcorn, she would get the popcorn popper out; she knew the routine.”

David explained that he would purposely not put the popcorn popper out.  He said, “She’d go get it out of the drawer, set it on the counter with the popcorn and stand back.  She wouldn’t speak; she’d just look at you like, ‘Come on, let’s get going.’”

Moving to a group home

When all of Sharmi’s siblings moved out, Sharmi became lonely.  It was at this point that they decided to place her in a group home where she could interact with other women who had developmental disabilities.  

Valerie was able to visit Sharmi often and would take her home with her on the weekends.  “I was married, and my children were very accepting of Sharmi.” Valerie said.

Admiration for sibling with Down syndrome

Valerie recalls all the time she was able to spend with Sharmi.  She was able to learn many qualities that Valerie admires. She shared, “They are completely without guile.  They love everyone and they’re continually positive.”

She continued saying, “They overlook all of your flaws, and it’s like a spirit surrounds them.  We always felt like she had an extremely positive impact on our family. I realized what a wonderful person she was and for the opportunity to have this wonderful person in your life, and to share her with your friends.”

Alzheimer’s and people with Down syndrome

When Sharmi was 40 years old, she started showing signs that she had Alzheimer’s.  Valerie said, “It was slow and progressive..I started visiting her more at the home rather than bringing her home.  She still knew who I was; she still responded when I would come.”

Sharmi started having seizures.  She also had poor circulation on her feet, this caused blisters to form.  The last five years of her life, she was in a wheelchair. The side effects of her seizure medication and the brain dysfunction from Alzheimer’s made it so Sharmi couldn’t interact and respond like she used to.  

Valerie shared her experience when Sharmi passed away.  She said, “You didn’t want her to go, but at the same time you did, because you knew that she was suffering and could no longer participate in the world..she passed away very quietly and peacefully, which is what we wanted for her.  I don’t think you could ever go wrong when you serve somebody, and Sharmi would do anything for anybody that she could.”

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Down Syndrome: An Amazing World

“I Knew He Did”

Immediately after Tiffany and TJ’s son Austin was born, Tiffany noticed Austin’s almond shaped eyes, she said, “Officially, we found out about a week after he was born, but when he was born I knew he did.” 

Some Challenges in Raising a Child with Down Syndrome

Tiffany said, “He was three before he really walked. Potty training a child with Down syndrome can be challenging. We potty trained him before he could walk on his own. People with Down syndrome have low muscle tone, so he used a walker. He did really well at potty training for a good year and a half, but not great. He’s currently going through a potty training regression, which is common in kids with Down syndrome.”

Finding Joy in the Small Things

Tiffany shared, “I definitely think some of the joys are when he hits developmental milestones, because that takes a long time. Those were precious and more important than I had remembered before with our other kids, that some things came to them quickly and they knew how to do that. We didn’t feel the triumph of it as much, but those have been some really big joys.”

“He loves people, and he loves to entertain. He’s a big people-person; he wants to be with people and learn. He loves books; that has been a huge joy. Some basic things are appreciated more than with my other kids that came easier to them. I’ve really found a lot of joy in small things.” 

Impact on Their Family

“For our daughter Jade, it has made her a lot more open and aware of her surroundings. I can see how she interacts with other kids who have Down syndrome, or kids who have any other kind of disability. She’s very cognizant of how she can help others and how she can interact with them.”

 “For James, one of the things that was interesting to me was that soon after Austin was born, we had a friend whose son has SMART (Spinal Muscular Atrophy with Respiratory Distress). It’s a very rare disorder, and so shortly after Austin was born, James decided to do a birthday where instead of getting gifts for himself, people would donate to this organization that helped kids with SMART. For our children, it has made them more aware of the world around them and how they can help other people.” TJ stated.

Tiffany shared her views on Austin’s role in their family. “They’ve seen us enough with advocacy, working with Down syndrome awareness month and with World Down syndrome Day. I think that recognition made them want to participate. There was a time where I thought they didn’t need to do anything, because I didn’t want to pressure them to do stuff, but they said they wanted to do something. Even today, we were sharing about something at school so that they could celebrate it with their friends. I think that’s a really good opportunity.” 

Becoming Involved 

“We started attending (their local Down syndrome association group) after Austin was born. I went to the first meeting. I’m a social worker, so I like group things and support. I thought, ‘okay, he has Down syndrome; let’s go meet some people who have children with Down syndrome and learn from them.’..It’s amazing the connections that you make meeting people through that group, finding good friends who understand things differently than most.” Tiffany said.  

She continued saying, “I just felt like when Austin was born, that this is something else we need to learn about. We can do it if we reach out. We’ve gone to national conventions and learned a lot from experts and other parents. It has been an amazing world to step into and to learn from so many people.”

Tiffany and TJ are now heavily involved with the local Down syndrome association in their community, East Texas Down Syndrome Group, where Tiffany has served as the Executive Director, and they have put together many Walks/runs to raise awareness.

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Unicorn

Down Syndrome

Gina shared her experience in finding out her daughter, Larkin had Down syndrome.  She said, “I had her via C-section, and my doctor showed her to me over the little drape; I knew immediately she had Down syndrome.  He looked at me, and I looked at him..it was just a silent conversation between us. We didn’t have to say a word; we both knew what it was.  Larkin’s dad had no idea, he was just happy.”

Larkin was struggling to breath as well as struggling to feed.  Larkin was in the NICU for a while when one of the nurses suggested that Larkin receive a feeding tube. They wanted Larkin to be able to go home and get stronger.  

“The Most Stressful 11 Days of My Life”

Larkin was sent home from the NICU with a feeding tube, a nasal cannula and a O2 monitor.  She was only home for 11 days before she was admitted back to the NICU. Gina recalled, “She was home for 11 days, and I tell everyone that it was the most stressful 11 days of my life.”

The reason it was so stressful?  Gina explained, “I knew she was aspirating.  They wanted me to try and bottle-feed her, to try and work on that, but I could tell she was aspirating and it was crazy.”

Being Readmitted to the NICU

Prior to going home after Larkin’s feeding tube surgery, Gina was told to come back in if the feeding tube became loose.  Gina said, “I called Larkin’s dad at work and said, ‘I think her feeding tube is loose. We should probably take her to the hospital.”

After arriving home from work, they brought Larkin to the hospital. Immediately readmitted her to the NICU.  Larkin’s oxygen levels were not stable. Gina said, “..within a few days, she coded and had to be intubated, at that point, they consulted a neurologist.”

Spinal Muscular Atrophy

The neurologist suspected that Larkin had spinal muscular atrophy or SMA.  Gina had never heard of SMA before. The neurologist advised her not to worry about it until the results came back.  Gina of course, Googled what SMA was. 

Gina said, “I just broke down. What I read was that it was the number-one genetic killer of age two and under, and they lose the muscle to breathe and feel well..I had to wait 14 days for the test to come back and it was positive.

More specifically, Larkin was diagnosed with SMA type 1.  SMA is a progressive neurological disorder that results in muscle death and loss of muscle.  Having already researched SMA, Gina knew her options and had made up her mind. She said, “I knew my options were to have her trached and put on a ventilator or to basically extubate her and let nature take its course..at two-and-a-half-months-old, she had the trach surgery, and she’s been on a vent ever since.”

12 Years of Raising a Medically-Complex Child

Despite having SMA and Down syndrome, Larkin is 12 years old. Gina said, “I’m not going to tell you it has been easy; it has been a roller coaster”.  She explained that for her, taking care of a child with disabilities that requires several different machines has been the most difficult part in caring for Larkin.  

She said, “..when they’re hooked up to so many machines that you can’t really leave.  I stay in her room all the time if I don’t have nurses, so I’d say that’s been difficult because of her care”

Raising Larkin has Been Well Worth It

Even though Gina said that raising Larkin has been somewhat of an emotional roller coaster, she also shared the many joys that have come.  She stated, “She’s just like my best friend. I hold her hand all night long..we watch TV or we paint fingernails, and we just make the best of it.”

“She’s such a happy girl..It’s just so magical with her, so happy being able to be with her.  Those are my joys. She loves everyone, and we have so many more friends just because of Larkin.”  

Larkin is the Only One in the World

Gina said, “Larkin is the only person in the world with Down syndrome and SMA type 1, so we call her a unicorn..she makes me so much stronger, more independent, more outgoing and more bold.  I see that for myself, and I see that for her. I have to advocate for her.”

“There are so many times that I’ve saved her life, literally saved her time..I’m the one who’s on call  24/7. I run in the middle of the night and save her life, and I kind of feel like she saves mine because she is amazing.”

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Will Can Fly

Shocked to learn your child has Down syndrome

Nikki was a young mother of four children when she was pregnant with her fifth child Will.  She had no reason to suspect that Will would be any different than her previous children. However, she realized a few minutes after he was born that Will had Down syndrome. Nikki said, “It was a total shock, and i was scared because like Alan said, I had never known anybody with Down syndrome, and I didn’t know what that meant for me or for him.”

Nikki looked at Will’s almond shaped eyes and soon felt a calming rush come over her and knew that everything was going to be okay.  She said, “..I didn’t have that grieving process like Alan did.”

Grieving over your child’s diagnosis

Alan struggled to come to terms that Will had Down syndrome.  He explained, “Unfortunately, it took me a good month and a half to really move past that..when he was born and they were cleaning him off, I could tell right away just by looking at his eyes that he had Down syndrome.  It was like my whole world just turned off.”

He continued saying, “I thought that our world had come to an end. Yes, it was really hard for me, and unfortunately, I turned a very beautiful situation to a negative one.”

Before Will was born Alan shared an experience he had while praying.  He said, “As we prayed as a family at night..I had another strong feeling that Will was going to be different.  I had a very distinct feeling that he was going to have Down syndrome.”

That experience is something that Alan says helped him in the grieving process. He said, “My family was definitely the driving force to overcome those negative feelings.  A big part for me was that I had a feeling that Will had Down syndrome.”

“I’m so jealous”

After Will was born, Nikki and Alan received an outpouring of love from friends and family.  Alan shared, “Neighbors and friends just poured out saying, ‘I know someone with Down syndrome, and they are just an incredible person, and your life is going to be blessed.’ and just all these fun stories.”

Nikki added, “Alan also heard more than once after Will was born. ‘I’m jealous that you had a child with Down syndrome. I’ve always wanted a child with Down syndrome.’ I just thought that was awesome.”

Impact of having a child with a disability on the family

Will was immediately accepted into the family by his older four siblings.  Alan attributes Will to helping his children become more accepting of others who are different.  He said, “I was in a grocery store with Ali..we were walking down an aisle, and Ali saw an older girl with Down syndrome, and she tugged my arm and said, ‘Dad, look at that girl over there..she has Down syndrome; she is beautiful.’..he’s already teaching my kids so much.”

When Will’s siblings are ornery, Nikki says, “You need some Will time.  Can you go over there for a minute? It changes their mood immediately because he has such a special spirit about him that he makes everybody happy.”

Raising awareness for Down syndrome

Alan is a skilled photographer who one day came up with the concept of ‘Will Can Fly’.  He said, “When Will was one and learned to roll over on his stomach, he would flap his arms and legs like he was trying to fly..One day my son and I were sitting here, and Will went into his flying pose, and I thought, ‘I’m a photographer; I’m going to help him fly.’”

From there, Alan shared the photo on Facebook and knew instantly that it was something special that he wanted to keep doing; Will Can Fly calendars were born.  Nikki said, “Half of the proceeds goes towards Ruby’s Rainbow, which helps provide scholarships for adults with Down syndrome attend college. The other half goes to Reece’s Rainbow, which helps with adoptions all over the world of children with special needs.”

“Don’t Stress out”

Nikki shared her best advice for new parents of a child with Down syndrome.  She said, “First, especially if you learned in-utero, don’t stress out and don’t go to Google..Immerse yourself with other families who have children with Down syndrome, because it will completely ease your mind..as soon as that child is born or you know that you are having a child with Down syndrome, you’re embraced into this huge Down syndrome family and it’s amazing.”

Alan shared his advice, “I would give them a high-five and say, ‘Welcome to the cool club!’ We have met a lot of families who have a child with Down syndrome, and I have yet to meet a family who has a negative reaction to it or a negative outcome from it.  All of them talked about how blessed their lives are, and I feel the same way.”

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