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Tuesday, May 31, 2016

So you just had a baby with Down syndrome. Now what?


Itty bitty baby Quinn
If you’ve stumbled across this post, it’s likely because you are about to embark upon a journey you never planned for. I understand and remember that experience well. Learning halfway through my pregnancy that my son would be born with Down syndrome was like stepping into another world. I felt lost, isolated, and angry. I felt as if my life would never be “normal” again. I remember worrying that I would never be able to keep track of the different milestones, the doctor’s appointments, the therapy sessions. And to be honest, these things were difficult in the beginning because I didn’t know where to start. I also wanted someone to tell me the truth about my future; the internet is full of sunshine-and-rainbow accounts of raising children with Down syndrome, but I knew that couldn’t always be the case. Surely these parents were devastated by their child’s diagnosis and exhausted from the extra time a child with special needs requires, but I wasn’t seeing that on the blogs I read. 
When Quinn was born, I realized that Down syndrome was not a worst-case scenario, and despite my early misgivings, I wouldn’t change a thing about him now. My son is a light in this world and, had I known what to expect from the beginning, accepting his diagnosis would have been easier.

So first and foremost, congratulations! We often get so wrapped up in the fear and grief that accompanies this diagnosis that a lot of people forget that a TINY HUMAN LIFE just entered the world (or is on its way, if your diagnosis came prenatally). Seriously, congratulations. This isn't easy, but I promise you, it gets better. Once that's taken care of, consider the following steps:
  1. Love your baby.
  2. Love your baby.
  3. Repeat steps 1-2.

Feeling better yet? No? That's ok. It's probably because you have no idea what you're doing. If this baby is your first, those feelings are likely multiplied by 100. Don't worry, none of us knew what we were doing either. Sometimes I still don't. But the most important thing you can do are steps 1-3 above. The rest will fall into place. When you ready to move forward, here's what you need to know:


Let’s start with the tough stuff…

  • Medical Issues: Kids with Down syndrome are more likely to suffer from a myriad of health issues than typically-developing kids. They are prone to heart defects, leukemia, vision and hearing problems, respiratory issues, autism, and ADD. But before you wring your hands with worry, keep in mind that they also respond very well to treatment for all of these issues. The best advice I can offer is to find a pediatrician who respects your opinion as a professional parent. You will likely become an expert at Down syndrome care in the first year and you’ll be aware of the tests and screenings that need to take place, often even more than your pediatrician. A good doctor will take your research seriously and offer to help you find the right specialists and make the right referrals. Also be prepared to spend the first year of your child’s life visiting doctors who will rule out the aforementioned issues. My husband and I always joked that Quinn was such a good sleeper (he slept through the night almost from the beginning) because he knew how much we would need it. And we did. 
  • Developmental Delays: If you’re a first-time parent, you might not immediately recognize your child’s hypotonia (or low muscle tone), but those with experience holding newborns will likely notice that a baby with Down syndrome has less control over his body than a typically-developing child. This hypotonia is responsible for delayed motor skills like crawling and walking, and has a tendency to interfere with proper feeding and speech. As a result, you want to sign up for Early Intervention Services as soon as your child is born. These therapies will assist in the development of fine and gross motor skills and eventually speech. Both insurance and Medicaid often help families cover the cost of these services. To see who to contact in your state, visit: http://ectacenter.org/contact/ptccoord.asp

    credit: http://www.ndss.org/Resources/Therapies-Development/Early-Intervention


  • Other people’s perceptions: This was the hardest for me. Upon Quinn’s diagnosis, everyone suddenly became an expert on Down syndrome because their brother’s friend’s cousin once knew a kid with Down syndrome. These people’s well-meaning opinions and advice drove me crazy in the beginning. I didn’t want people to “pray for me” as if I were suffering from an illness, and I didn’t want to be told that “special people are chosen to raise special kids.” I didn’t feel special, nor did I want to separate my child from others as if he were already being labeled and isolated. There’s no easy answer for coping with these comments except to remember they’re coming from a good place. Remember that your child is an individual and is not like everyone else with Down syndrome.

But here’s the silver lining…

  • My life is “normal”: this was a pretty significant fear for me in the beginning. Would I suddenly become a social pariah because of my child’s disability? Would the time needed to care for him take over my life? Would my other children’s’ needs be met? Could I still work? When Quinn was born, I still worried about those things, but I can honestly tell you that my life is not any less “normal” than a parent with a full-time job and three young kids. Quinn is very much like any other child, though he is a little slow to meet major milestones (for example, when he was 12 months old, he was just starting to crawl, while my other kids were/are walking at that same age). Truth be told, some days these delays affect me and other days they don’t. The most important thing for me is that he’s treated the same way as everyone else. He receives just as much love and discipline as every other child his age. No one turns him away because of his disability.
  • Your child will light up a room: Atticus and Lucy are beautiful children. They have giant brown eyes with impossibly-long eyelashes and winning smiles. They know how to receive attention and deliver laughs. But none of that compares to the reaction I get from strangers when Quinn is around. I’ve seen women run from across a crowded store to fawn over him. And Quinn smiles brighter than any child I’ve ever known. He’s content, easy-to-please, and generally even-tempered. Except when he’s not.
  • You will make new connections with other parents: When we received Quinn’s prenatal diagnosis, I was introduced to many people in my community who are raising children with Down syndrome. These people have become my support system, my resource, my family. Their children inspire me as much as my own, and together we are a force that advocates for acceptance, inclusion, and awareness for the Down syndrome community. We’re also friends who get together often for picnics, parties, and play dates. I’ve found that most of these people would be dear friends even if we didn’t share this special commonality; it’s as if our children brought us together.

The journey you’re taking is slightly different than the one you planned for; this news is initially devastating to face. But it gets better. I can honestly say that I love my son fiercely just the way he is. I once read somewhere that we are sent here to learn, while those with Down syndrome are sent here to teach. I’m not usually one for the hokey message of fate and spiritual intentions; that type of euphemism tends to rub me the wrong way. But I can’t deny the person I’ve become since having Quinn. His existence is my greatest accomplishment. I’ve learned more from him in less than two years than I’ve learned from anyone in my entire life. He has taught me patience and perspective and helped me realize that the life I wasn’t planning for (a life that many actually take steps to avoid) is one I would choose to live all over again.
How can you not love this face?

14 comments:

  1. Crystal AckermanMay 31, 2016 at 11:44 AM

    �� Beautifully written and although I don't have a child w Down Syndrome everything you wrote touched me. Your words of wisdom are surely comforting to any parent embarking on this journey. Side note I love seeing their pictures on Instagram. I can tell Quinn lights up a room like no other. As a former preschool teacher I would of loved to have him in my class over and over. He would of helped me lead Bear Hunt most days! ��

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  2. The sentence under his picture says it all...

    I miss my old friend Siegfried... He had down syndrome and was probably the most upright, honest and warm hearted person I know to this day.

    Quinn will make his path! With such great parents and his brother and sister he can be assured to have a great childhood to look back at...

    Sqeeze that lil nugget and your other two as well... Tell atticus " the force is with you, young Jedi"
    Greetings from Germany

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  3. I don't normally follow blogs because I find most of the information to be opinion based, but I have never read anything more true. I myself do not have a child with down syndrome but I have experienced many of the things you talk about through my best friend. She and I met in kindergarten we are both 19 now. Growing up with her I saw everything you described and more. She is special and I wouldn't trade her for the world. I will never forget the day we became best friends for one because she will never let me and for two because it changed my life. This information will be helpful to any parent expecting a child with down syndrome. So thank you!

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  4. This was a great post! I wish we had the internet when my daughter was born. She's 31 now but she doesn't light up a room. Never has. I think people with Down Syndrome are exactly like everyone else in that area, some do and some don't. Now, my daughters boyfriend, he also has Ds and HE lights up a room! They make a great team!

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  5. I think you are the strongest, most well versed person I know! He is an amazingly sweet child��

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  6. But it isn't, cannot be that way for everyone. And the people not having DS babies or having them and then falling apart will not be blogging about it...

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    Replies
    1. I'm not entirely sure what you mean by this comment, but the negativity is palpable and indicative of your own personal issues in this area. Perhaps you're struggling to cope with a past decision? Or perhaps you've witnessed the challenges that special needs parents face daily? I've never denied that raising a child with Ds is difficult, but it's worth every second and I wouldn't trade Quinn for the world or change who he is, 47 chromosomes and all. This post was written to help parents coping with a new diagnosis to find hope in what, at the time, is a scary future. Please don't rob them of that opportunity with your pessimism. I hope you find the peace within yourself to make better use of your time than to troll special needs blogs.

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    2. How can you not love any child let alone Quinn. His picture is anything but ugly. His face is full of life, light, love and purpose. His smile alone fills and warms my heart. You've been given a special task when you gave birth to this bundle of joy you named Quinn. Everyone isn't capable of raising a special needs child. It takes qualities above and beyond and I imagine that it can be quite challenging. It is a blessing and an honor that was given to you and you have obviously stepped up and made this little blessing smile that wondrous smile, and beam that illuminating light. The love you and your loved ones bestow upon him will mold him into such an incredible person. What a blessing, a purpose you have been given in life. Quinn's eyes beam, his smile is infectious and it moves me just from his pictures. I can only imagine what type of happiness he could bring to ones daily existence by just being in his presence. Your son is beautiful, and your love and dedication to raising, protecting, loving and keeping him lifted from the cruelty and mean spirited people in this world is inspiring. What more can I say. Thank you for sharing his light.

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  7. Quinn is darling! You are blessed! Thank you for posting his pics... It has brightened my day!

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  8. Quinn is gorgeous! I loved reading the response to the troll. Well done. I'd have sought him out to beat him up....

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  9. Quinn you are a gorgeous little boy

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  10. It makes me sick how many ignorant people there is in this world Quinn has a beautiful smile and he is gorgeous

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  11. I so admire your response to that ignorant piece of troll garbage.
    Whispering glances, hand over mouth displays, pretending not to notice reactions are disgusting, showing ignorance are some peoples only features; their only outlet for their own insecurities. Bless you. Been there.

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