MY ACCOUNT
Hello Down syndrome community of Nebraska! My name is Jamie Bertucci and I couldn’t be more excited to be the Down Syndrome Association for Families of Nebraska's first-ever Executive Director. Moving from the south, I acclimated to my first Nebraska winter as an adult 11 years ago. I have adapted to the Good Life nicely; I know the Runza menu like the back of my hand, and I swear that Casey’s breakfast pizza is the superior choice. I welcomed my first-born son, Nicholas, 9 years ago. He is a specially-abled, chromosomally-enhanced little boy, whose birth changed the way my family would forever see the world and the people in it. Currently, I am raising three hyperactive, slightly destructive, excessively noisy, eternally busy little boys. I am beyond excited to continue in my journey serving the Down syndrome community as the Executive Director of DSAF. I have had opportunities to explore cities, schools and other organizations in various places throughout the US, and I have always appreciated the community and support the people of Nebraska offer our loved ones with Down Syndrome. Nebraska has a strong economic standing, one of the best in the nation, and it is the dedication and hard work of our population that keeps our state strong. During our struggle to overcome and continue living during this pandemic, most families who care for someone with Down syndrome have felt the impact of school and work closings more than the average family. If the needs of children and adults with Down syndrome were not apparent before, they most certainly have been exposed during this pandemic. As the Executive Director of DSAF, I hope to be the bridge for families to receive the support, encouragement, and information they need. My efforts will be focused on bringing communities together to offer assistance and events that our friends, children, and loved ones with Down syndrome require. I am excited to get to know families across the state and hear about the successes and opportunities you are experiencing now. Emails to director@dsafnebraska.org with information about your loved one with Down syndrome are encouraged and welcome! Thank you for this opportunity! I am honored to serve you and look forward to our journey together. Sincerely, Jamie Bertucci Executive Director Down Syndrome Association for Families of Nebraska
Niah’s ROAR By Renae Rief
What are your names and your children’s names?
What does Niah most like to do? Niah love’s boating and everything about it: family, riding, tubing, and watching. She loves swinging, watermelon, listening to music, and she absolutely adores Christmas. She is a “family being together” kind of gal…which has been quite the asset to our little family and BIG extended family. Niah enjoys being surrounded by LOVE. Even though she appears from afar to relish being alone, she is our “love being NEAR the action, not IN the action gal.”
What does Niah least like to do? Being the first one to enter a room or building – especially in a new setting. She prefers that others walk in front of her with a bit of space. She also does not want you to see her smile so she puts her arms up so that you can’t see it.
What does Niah’s brother love about her? Cohen just really enjoys her presence. It seems silly, but he does. While Cohen was playing in the Spring rain he exclaimed "I need something." "I need Niah!"- priceless.
Niah Sienna and Cohen are unique kiddos. I see Cohen taking great pride in that uniqueness and being totally comfortable with differences in himself and others. He embraces Niah’s unusual behaviors that make her stand out in a crowd. This has sparked confidence in Cohen to reach out to others and be a leader. He loves talking about Niah and her story. “Niah may have Down syndrome and Autism but she is more alike than different, and I love her.” – Cohen Rief
What tipped you off that she might have something more going on than just Down syndrome? Niah’s greatest challenges always revolved around communication…yes, she was delayed on a variety of milestones often consistent with DS, however she started rolling over at a young infant age of 4 days. Until the age of about 6, Niah was gaining spoken words. It took quite a while to confirm the co-occurrence of Autism Spectrum Disorder (ASD).
I knew in my gut that was probably what was going on. he started to regress and was unable to do things that came easily before, such as knowing and singing the alphabet and “Happy Birthday”, naming all her classmates, engaging in conversations, and playing with others. She was keeping way more to herself and was just not interested in pretty much anything. She started being noticeably quiet and the words just went away. She would stare off in the distance and in fact it was thought she was having seizures. That was part of the delay in the diagnose – to ensure it was not something medical and to differentiate what was potentially ASD instead of Ds. This required appointments with a variety of specialists that, at times, resulted in months of waiting before Niah could be seen. Eventually, the Psychologist at the Kansas City Down Syndrome Clinic said that Niah had the tell-tale signs of an individual with DS-ASD…it was a weird sense of relief.
What support would you offer other parents who have a child with more than the diagnosis of Down syndrome?At times it feels like a mountain of things that need to be accomplished. I, especially, must put myself in check and really focus on what will make Niah happy and as self-reliant as she is able to be throughout her entire life.
I know school is always a big deal with lots of questions by parents, so I shared an example Vision Statement and some questions we use during school meetings.
You already know the drill that “extra” comes along with Down syndrome, and I would say the same holds true to ASD – extra, extra, though – which means all kinds of surprises. If Niah Sienna is any indication, though, surprises can be good and even amazing.
What are ways that people can best support Niah and others who may have a similar diagnosis?We hold a special place in our hearts for DSAF. When Niah grew out of the DS Walk team name “Niah’s Twinkle Toes” -- inspired by her love for dance-- we knew we needed a name that encompassed the ever-evolving girl Niah was growing into. We asked some of Niah’s close friends for name ideas. They nailed it with “Niah’s ROAR: Reaching Out for Acceptance Rocks."
It was the perfect combination of Niah’s love for music, a bit of irony for Niah’s non-traditional communication style, and totally on target for the essence of advocacy and awareness of the Step Up Walk. This team name has so many pieces of Niah wrapped up in it that over the years we have been able to use it to spread awareness through social media and Cohen’s presentations to his and Niah’s classmates – even to a local community group.
“Niah’s ROAR: Reaching Out for Acceptance Rocks"
All the Best Superheroes Are Adopted By Melanie Kirk
About a year ago I heard of a new family to join the Down syndrome community here in Lincoln - not because of a surprise diagnosis - but because of adoption. Many families, mine included, struggle initially with receiving the news that a child with Down syndrome is entering their lives. For the Kirk family, though, there was a much different sentiment the day that Teddy officially became “theirs.”
Enjoy this interview conducted in classic "COVID-style" (i.e. via email!) There was just too many good things to share that I couldn't edit any of Melanie's responses for this blog.
- Mary Sweeney, DSAF Marketing and Development Director
What are your children’s names and ages?Logan Kirk (14) Oliver Kirk (9) Theodore Kirk (3) “Teddy”
What are some of Teddy’s best qualities?
Teddy is sunshine. He has this ornery little giggle. He loves music and dancing. He has the most beautiful curls (excellent for head bobbing along with his favorite tunes). He adores his big brothers. He is sassy and bossy and absolutely hilarious. Discipline is always hard because we are trying to keep a straight face.
Tell me how you got to be the lucky family for Teddy.
Both of our older children were born prematurely following rather harrowing and dangerous pregnancies. Our oldest son came home on oxygen, apnea monitors and sat monitors, eventually we added a feeding tube and daily growth hormone shots. He is a bit of a medical enigma, with both a rare lung disease and an endocrine issue similar to Addison’s disease. Our second son is healthy now, but was still-born at 2 pounds and I experienced preeclampsia and eclampsia. We knew that when we added to our family, we wanted to be able to utilize the medical skills we learned along the way as we raised Logan. We knew how overwhelming it could be to be suddenly on a different path as a parent, one that can be described as bumpy, with lots of twists and turns and detours.
I’m now an attorney who works in juvenile court (I was in undergrad when my oldest was born, and in law school when my second son was born). There are so many families who have come into the system for various reasons, from domestic violence to substance abuse, to untreated mental health or abject poverty. Those families need assistance of some kind in order to try to be in a position to safely provide the care their children need. While families are getting that help, their children need safe and secure foster homes that can meet the needs of those children. It is not always easy to find a foster home ready to provide care for children with medical conditions, who require tube feedings or supplemental oxygen and regular appointments with multiple specialists. That is why we became licensed foster parents. We were interested in both short term placements and respite as well as potential adoptive placements. We have been very happy to welcome children into our homes to provide respite to their foster or biological families.
With Teddy, we were contacted about a placement for a one and a half year old boy who had already been in care since he was an infant, whose permanency goal had been changed from reunification to adoption. His wonderful foster family that had cared for him since birth wasn’t in a position to offer permanency. I read the information sent by our foster agency and immediately left work and went to my husband’s workplace and shared it with him. I told him that day that as soon as I saw his picture I thought, “He’s going to be our son.” We didn’t know at the time whether that would be for a short time or forever, but we both agreed that our hearts and home were open to him if he were placed with us.
I don’t want to go into great detail about Teddy’s biological family, out of respect for their privacy, but I do think it is important to say that Teddy has been loved from the day he was born. Teddy’s biological mother loves him very much. She still has contact with him. The determination that our home was what Teddy needed was not an easy one. That piece is often overshadowed when people talk about adoption or foster care and I always think that there needs to be some attention paid to the reality that adoption does not happen in a vacuum. While we were experiencing the joy of getting to know this wonderful bundle of curls and smiles and energy for the first time, others who loved him greatly were missing those same moments. There is no getting around how heartbreaking that truly is, regardless of the situation which led to the placement of that child out of home.
After Teddy had been with us as a foster child for about six months he was made legally free for adoption. We were able to schedule our adoption for National Adoption Day last November, which allowed friends and family from out of town to come and be a part of the celebration of our new family of five. We decided that the theme for Teddy’s adoption celebration would be “All the best superheros are adopted” because we felt that truly reflected the situation. Like the Kents from Smallville, Kansas, our home has been entrusted with the care of an amazing life that we didn’t bring into this world, but who we adore as though he were. And we are charged with helping him grow into the amazing person he is meant to be. In the immortal words of Stan Lee, with great power comes great responsibility.
How do the siblings feel about their new little brother?
Logan and Oliver each have such wonderful relationships with Teddy, but they are so different. Logan, who is now 14, has a gentle spirit and imagination that he shares with his baby brother. In fact, “LoLo” (as Teddy calls him) is the one who sits in with Teddy at bedtime, explaining all about Minecraft and Mario until Teddy falls asleep.
Oliver and Teddy are connected by their shared impulse to be full speed, full time, 100% rough and tumble boys. They wrestle and giggle and generally make ridiculous amounts of noise together with the shared goal of getting as much fun out of each day, with the added bonus of annoying their big brother.
Did it concern you that Teddy had Down syndrome when you decided to adopt him?
Not so much concern as desire to learn as much as we could in order to be up to speed on his needs and how best to help him as he grows. We were well adapted to his oxygen needs and feeding tube and medication regimen because we had been through that with Logan. But Teddy’s medical needs are still different from Logan’s and so we did a bunch of reading when he was first placed with us. We reached out to a family we know who have a daughter with Down Syndrome and were able to pick their brain on what we can do and what they experienced. That was incredibly helpful. We are also lucky to live in a town where there are wonderful resources for families of children with special needs of all types, and we have been able to utilize those groups to learn and grow as well.
Has DSAF been a valuable resource to you? If so, how or in what ways? We were able to take part in the Step Up Walk for the past two years as well as various other programs that DSAF has sponsored. It is so amazing to be able to speak with other parents and families who understand the experience being blessed with a child affected by Down Syndrome really is. It’s more than a shared diagnosis. It’s a shared experience that comes with amazing highs and also some pretty scary potential lows that are all much more manageable when there are others with you who understand your child’s journey.
What would you like to share with parents who are just finding out their child has Down syndrome?
Don’t let others define your child and his potential. You will find that you are stronger than you ever thought you would need to be, but that doesn’t mean it is always easy. You have a family in other parents that will always be there to help and answer questions. You aren’t alone. It’s okay to be scared and feel a sense of loss when you realize that your child’s life and your life will be different than you had imagined. Different isn’t less. It’s just new. Unknown. But the journey will be just as beautiful, and probably more amazing as you begin to see it through your son or daughter’s sparkling eyes.
I also think it is worth sharing some incredible advice I received from a doctor once: If you cry in the shower, you can avoid the post-crying jag headache and red eyes. I share this not because I think parents of special needs kids are crying all the time, but because I think that parents of special needs kids often feel overwhelming pressure not to break down or cry or show weakness in any way. And that is neither fair nor realistic. Crying is okay. Everyone has those types of days. We should all know it is normal to cry. And nobody deserves that horrible headache.
If other families would like to consider adopting a child with Down syndrome, how would they go about that and what words of encouragement would you have for them?
Please consider opening your heart to children in the child welfare system as a foster parent. There are so many children who need support and love while their families work through the system. Every foster parent’s path is different. Some lead to adoption. Others lead to lifelong supportive relationships with families who were in crisis but were able to be reunited with their children. If you have skills and knowledge about kids with special needs, whether through your job as a nurse or doctor or teacher, or just through your interactions with special needs children in the community, please consider sharing those skills as a foster parent. Some foster parents only do respite care, providing a break for families. Some only take placement of older children. Don’t ever be afraid to ask for more information if you think you can make a positive impact for a family or child.
For more information on fostering or adoption, visit the Nebraska Foster and Adoptive Parents Association at nfapa.org or National Down Syndrome Adoption Network at ndsan.org.
Before too much time has passed and I forget the details, I wanted to share our incredible experience at the new(ish) Down syndrome clinic at Children's Hospital & Medical Center in OMA. Bear with me, this might be a long post! Hopefully it benefits all parents out there in Nebraska with a child with Down syndrome!
Long story short, last Tuesday from about 1:30 to 5:30 PM , we met with a team of seven different specialists who know all the ins and outs about children and Down syndrome and it was sooo great!
They included a pediatrician, psychologist, social worker, physical therapist, occupational therapist, speech therapist, dietitian, and a nurse care coordinator. It was an incredibly long appointment and exhausting on Henry but so very valuable!
Our pediatrician in Lincoln recommended us getting on the waitlist there a few months ago when things started to get pretty rough at home and school with Henry’s behavior and he wasn’t sleeping well (up for the day anywhere from 2am-5am!) It just seemed like we weren’t getting anywhere with the small amount of resources we had provided for us at school so she recommended seeing what the Down syndrome clinic would have to say.
Of course with Covid it took us a while longer to get in there than we had hoped and we had to start creating a team to support us here in Lincoln. (Which has helped soooo much!) All that said, even though we didn’t have huge health concerns or anything like that it was still such a valuable appointment.
They reviewed what we were currently doing with our psychologist and occupational therapist here in Lincoln and provided some good insights on questions to ask them. They also suggested some different blood panels to run on him and a special pneumonia vaccine that might help him this winter to not get such bad crud in his chest and sinus infections like he usually does.
Each person probably spent a good 20 to 30 minutes with us and really wanted to get to know Henry. They all said to consider them part of our team and reach out at any point if we have questions. (To someone who felt soooo alone the past year with Henry’s behavior, this was such an encouraging thing to hear.) Because Henry has never had any huge medical issues we have never had a reason to have this much support, but I can’t tell you how nice it was to spend 3 1/2 hours talking to people all about my son and walk away feeling like 1) we’re doing a pretty good job with him, and 2) we have a whole team of people to back us up if/when things get crazy in our life again.
So watch the videos at the end. I’m happy to answer any questions for any parents who might be considering this. If you do have an appointment coming up, I recommend bringing lots of snacks and games/toys for your kids to play with. Also don’t be afraid to open up the door and have your kid run up and down the halls a few times between appointments. It gets to be a long time cooped up in one small room!
And if you’ve never heard of this clinic, talk to your pediatrician about getting you on the waitlist. Especially if you live far outside of Lincoln or Omaha because it is a great way to get all these appointments done at one time. They said we could meet as often as once a year or just as we feel it necessary.
So that’s my synopsis! Henry and I walked away happy and I feel 100% more confident going into this school year than last year. Thanks Down Syndrome Clinic! #Godisgood!
Most people with Down syndrome are at “high risk” for COVID-19 because of certain underlying medical conditions. DSAF is proud to support GLOBAL and this IMPORTANT UPDATED Q&A about Down Syndrome & COVID-19.
This UPDATED Q&A includes important new resource links, information on returning to school, work and programs, and health outcomes for people with Down syndrome who have contracted COVID-19. We strongly recommend you read through this important resource and stay vigilant during this devastating pandemic.
We applaud the national consortium of Down syndrome organizations for creating this important resource for community. Please remember we are here for you during this difficult time and do not hesitate to call or email. In the meantime, please stay healthy and be safe!
It’s nearly 5pm when I should be wrapping up my usual day’s work, but I can’t because I’m sitting here still trying to think of what to write to DSAF friends and allies to lighten your load. Everything is so different these days now that COVID-19 is part of our lives. I’m now not only a mom, wife, and marketer/fundraiser – I’m also a teacher, special educator, psychologist, referee, sidewalk chalk artist, nurse, and SO much more.
I share this not to have you feel sorry for me – but rather to let you know that I’m right there with you. DSAF is right there with you. When you wonder how on earth you will be able to handle it all, DSAF is thinking about you. As you are reading this know that YOU are in our minds. YOU and your loved one with Down syndrome are our beacon. YOU give us purpose. YOU make us search out new ways to connect virtually so we can share smiles, be inspired, cheer each other on, and provide (virtual) shoulders to cry on.
There is good in the world. And YOU are that Good. COVID may have altered what our reality looks like right now, but COVID Can’t Stop Good.
Together we will get through this. Together we will continue to support all people with Down syndrome in Nebraska. Thank you for carrying the torch and walking this journey with us. We are here for you!
Thinking of you,
Mary
P.S. Your contributions for this Give to Lincoln Day will help DSAF continue to do good all throughout Nebraska. Please spread the word and be generous on May 28, 2020! https://givetolincoln.com/nonprofits/dsaf
Click the image below to check out this April Smile Message from DSAF Board and Staff. We are still here for YOU!
I Wish I Would Have Known By, Jessica Gushard
I wish I would have known that forced smile on my face would soon be a smile I can’t wipe away. I wish I knew those little eyes would turn blue and stare at me to tell me it’s okay. I wish I knew that palmer crease on your left hand would soon grip my finger at every feeding telling me I’m needed. I wish I knew all that hair would soon go in a ponytail and make your brothers laugh until they fell to the ground. I wish I knew that despite all the unknowns and scares with a diagnosis, you would make us better people. I wish I knew how many friends we would soon make and have by our side every step of the way. I wish I knew how much life would change for the better.
Briggs Barrington, I’m scared for our new life, but most importantly, I’m excited and confident we are going to have a great one.
Diagnosis day is no joke, but day by day, it becomes a smidge easier. #upsyndrome #lovemyhomie
Blessed to Call You My Son By, Jennifer Vancura
We found out that our son Camden was going to have Down syndrome halfway through our pregnancy. On ultrasound, it was discovered that he had duodenal atresia (a blockage in the duodenum, or first part of the small intestine). We were told that about one-third of infants born with duodenal atresia will have Down syndrome. At that point we had to know, so an Amniocentesis was performed. I will never forget waiting for the call that Saturday morning. The phone rang. I was terrified to answer, knowing that in an instant I would be extremely happy or completely devastated. I picked up the phone and answered with my husband Blake sitting by my side.
I was told the news I had feared so much. Our son was going to have Down syndrome. We felt hopeless. Hopeless for what our son’s life would look like, hopeless for what parenthood would be like, and hopeless for what our family would be like – different from the one that we imagined. The dreams that we had for our son felt completely shattered.
Camden arrived on July 3, 2018, at 9:58 PM. I got to hold him for a quick picture and then they took him straight to the NICU. Camden went into surgery on July 4, 2018. Surgery went well and we were in the NICU for 2 weeks while he recovered.
Early on, we contacted the Down Syndrome Association for Families of Nebraska for support. It has been amazing to receive the support from other families and to see these families happy and flourishing. I have built strong relationships with the families in the community. We all have a special bond with each other. We call ourselves “The Lucky Few” for a reason.
Blake and I have had several high points this past year that Camden has been in our lives. Watching him grow and develop, getting to know his amazing personality, and seeing his smiles and laughs that melt our hearts over and over again. He has brought us a greater sense of purpose that has enriched our lives.
It does take a little more work for Camden to reach his milestones; but the extra effort makes every milestone a cause for celebration. We utilize the Early Childhood Development program through Lincoln Public Schools. As a team, we set goals and interventions so that Camden may reach his fullest potential.
I’ve been reflecting on our life before Camden and how humbling it has been to learn from him. One thing Camden has taught me is to accept and see the beauty in everyone. He has changed my perspective about people with unique differences and abilities. I now see immense beauty in differences, whereas before I may have thought the differences to be more of a flaw. He has taught us how to accept people as they are, regardless of their abilities and differences.
This past year we have fallen completely in love with Camden. Down syndrome has quickly become background noise. All that matters is that our child is happy and healthy. We finally realized what everyone was telling us the entire time to be true – that he is just our child. He is not the Down syndrome child; he is Camden.
If I could go back in time and relive one moment, I would go back to the day I heard the words “your child has Down syndrome”. I would want to replace that anxiety, sorrow, and anger with different emotions; hopeful ones. I wish I would not have cried all those tears, however, I do feel it was necessary to grieve the loss of the child we thought we were going to have.
To the new Moms or Dads facing the diagnosis of Down syndrome, I want you to know that in the end your child will “just be your kid”. You will love them more than you think you could love someone and you will embrace them for who they are. They will make you see life in a new beautiful way, I promise.
Try not to fear the unknown. I remember fearing all the “what if’s” and I let the fears consume me. “What if he never leaves the house?” “What if he wants to have a child someday?” “What if his peers don’t accept him?” And the list went on and on. Most of the fears that I had dwelled on, have completely faded away. Don’t waste your time fearing the unknown. Have faith that life will be better than you could ever imagine.
Camden, every day I am thankful that we were chosen to be so abundantly blessed to learn from you. How you have helped us grow! You are much more than I could have imagined prior to knowing the Down syndrome diagnosis. I am blessed to call you my son.
