10 Things I Hate About Having a Kid with Down syndrome


Things I hate about having a kid with Down syndrome? Let’s keep it real, shall we?  I don’t like everything about parenting. I hated my daughter’s croup. Why do I need to like everything about Down syndrome?

1.    I hate it when he uses his low muscle tone to his advantage in a tantrum. It’s not a fair fight.

I hear parents say “All kids do it, it’s age appropriate at 2 years old!”

Yeah? Well, say that to me when I’m draping a 28 pound liquid toddler over my arm like a highly disagreeable fish playing dead. Then still powering on with my grocery shop.

2.    I hate it when I’m picking him up from daycare, his friends are gathered around chatting to him, and he looks petrified. I know full well he’s not. His face is just telling me he’s in slight sensory overload. He’s still enjoying himself, while on the defensive. He is on first name basis with more kids than any other toddler I know (and he can’t even talk yet!) I know he loves the playground socializing. But the momma in me wishes I didn’t know what ‘sensory overload’ is, and how much therapy it took to get him to this point.

3.   I hate it when people give him things and let him through ‘because he’s cute’. Yeah, I know he’s freaking cute. He’s also the devil’s spawn and a totally manipulative little soul with a smile that could charm paint off walls. But he’ll still be waiting in the FRICKEN QUEUE. Behind all the other people. Because that’s where he belongs- in his place. I like to tell them that, too. Then I get a sympathetic smile that makes me want a magic lamp. One that will make said person his birth mother, for 48 emotionally manipulative hours.

4.    I hate it when I have to listen to the same freaking movie yet again, because I’m too lazy to make PECS communication cards with a greater range of movies than The Lion King and Frozen. IT’S ON THE TO DO LIST. Let it go.

5.    I hate it when he doesn’t eat his dinner, and I have to give him Sustagen for Kids. It makes me feel like I failed at parenting. Then I remember I created a beautiful, empathetic soul of a Big Sister almost exactly one decade ago. Who had even worse eating issues. She can even make her own 2 minute noodles! And then I high five myself.

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6.   I hate it when I forget to prep people to let them know my son has Down syndrome, and I have to coach them through their reaction. I don’t always mind.. but it’s draining. It’s like being delivered my diagnosis all over again, on a smaller scale. I can tell how much they know about Down syndrome by watching 30 seconds after they find out.

So I just keep putting it out there to 8,000 people on his Facebook page every day, and kinda just hope the locals in my town have seen him before on their sister’s friend’s cousin’s newsfeed. Is it too much to ask that EVERYONE knows EVERYTHING about ALL THE THINGS? Hey, it’s MY whinge list, remember. What I will never whinge about are all those ‘second’ meetings. Where they tell me how Parker changed something about their perspective.

And he hears, and just tilts his head and flashes a smile and all the paint melts off the wall in its direct path. Into a glorious puddle of rainbows and butterflies and kittens and unicorns.

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7.    I hate it when I have to leave Parker alone in bed asleep and shut the door. After finding out at birth my beautiful (Smurf coloured) baby had Down syndrome, oxygen issues, and sleep apnea, it has been liberating yet terrifying not spending his sleeping hours staring at him like a first time mother all over again. But a mother with a very real agenda, where I stimulate his back every couple of hours to get him breathing again. For 16 months straight. It’s been over a year since he came off oxygen, and I can still recall the hiss and smell of a new tank, and feel that little pang of hurt for him. Being delivered that metallic scent via a nasal cannula taped on with Cars Band Aids, instead of sniffing his mumma’s perfume while he breastfeeds. It’s almost overwhelming when I remember back and look at him now, pink and chirpy and chatting away in Parkinese. Time cured those floppy airways just as the specialist promised. Just like his sweet newborn ears made of the same cartilage, his airways hardened up into a toddler-proof version.

8.    I hate it when I’m at our playgroup, and our babies have similar issues. I hate it because I know what that behaviour means, and if they’re a new mum I’ve introduced to the community, they might not know and I’ll have to mention it. ‘Does your baby always sleep with his head tilted like that? Have you ever heard of obstructive sleep apnea?’

9.   I hate it when I worry for the future. Because Big Sister does too, and I don’t know what to say to her questions, sometimes. At least Parker’s future, I can bet my bottom dollar on. Because I get to make that happen. Whatever he wants, I will move heaven and earth to get. Unfortunately in Big Sister’s case, I don’t get to hold a special document called Power of Attorney. So yeah, I worry about her future.

10.   I hate it when I realise that two whole years has passed since my life changed, and I realize I wasn’t this person sooner. I am 30 years old, and it took me so damn long to learn what ’empathy’ is.

It is simply placing yourself in the shoes of another person, and understanding how they feel.

Every time a new friend learns my son has Down syndrome, I empathize when they are surprised, and unsure what to say. It’s ok that you don’t know what to say. I’ve been there, remember! My response to hearing the exact same thing about Parker was, ‘What’s his life span?’  Then I repeated it until the doctor stumbled and changed the subject. Then I yelled at him. That will always be the Number One Worst Response When Discovering Parker Has Down Syndrome.

Every time someone lets my son in a supermarket queue, it’s because he looks heavy. Because he HAS low tone. And they know my life is probably a little harder than the average momma. And they want to help me in the only little way they can. I’m still not going to take the free queue jump, when we’re both perfectly capable of waiting in line. (Unless he’s playing Disagreeable Fish: see 10.) But I empathize, and these days, I know that stranger just wants to create a small emotional connection.

Every time a new momma asks me, ‘Does your son do this too?’ I take a deep breath, make her a cup of tea, and pull out my mental encyclopedia of all things Down syndrome. Because I’ve been there.

Every time my daughter worries for her brother’s future, I empathize. She doesn’t understand yet that her momma’s totally got this. She doesn’t understand, because she used to see me worry too.

Before I knew better.

  But I can’t waste time worrying, anymore. I’ve got lists to write, and a toddler to love.


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About Kat Abianac

Kat is a writer and a passionate advocate for inclusion in the media and advertising. She has two children, one with Down syndrome. Use the 'contact us' tab on this site to request her media kit or to get in touch. You may republish content from www.parkermyles.com on your own site, provided a pingback is made to her original article and she is fully credited as author.

29 Responses to “10 Things I Hate About Having a Kid with Down syndrome”

  1. Hi Hun! My gf has a little boy that is five with DS. He is high functioning. He is very sassy to say the least. No seems to be his favorite word, he hits her and throws things at children and adults. She will disapline him but I believe not in a fashion that is totally age appropriate. She still treats him like he is a two year old. He knows that he can get away with it over and over again. My daughter is 7 and he threw a dog bone and it hit her on the head hard and when she started to disapline him he screamed no a d hit her. I feel like she lets him get away with these actions because he has DS. Please let me know your thoughts?

    • Danielle it sounds like he might need support with his communication. Maybe you can suggest some resources from an OT around visual PECS cards. If he throws a lot he might be like Parker and enjoys heavy movement to calm down, helping her create a small obstacle course for him and encourage him to run through it holding a heavy book or object wrapped up and made safe.

      Most of all- be kind. Children with speech delays are extremely clever at learning how to get their message across and believe me when I say she’s doing the best she can with the tools she has.

      You can’t force her to ‘do better’ but what you CAN do is help her find more tools. In fact you can even volunteer to make her life easier and ask if she’d like to try your help with the ‘heavy play’ by incorporating it into playtime when you visit. You’ll have a happy boy and a less hypervigilant mother who gets a break. It can be intense being the only one able to understand another persons needs.

      No parent lets a child ‘get away’ with actions without a cause. There’s always more to the story and she might just know if she changes certain things he’ll escalate to a point she doesn’t have the skills currently to deal with. It’s certainly not just because he has DS but rather many reasons that lead to situations like this. I often find myself at a wits end so I just do what I need to to prevent him escalating, until I can ask for support with the situation in my next therapy session.

      It gets much easier as he gets older, too 🙂 it was so reassuring reaching out to parents with older kids. This stage passes.

    • That’s such a classically insulting take on the issue. The behavior is the norm and the constant struggle for parents of T-21 kiddos. Do you think they want their kids throwing things? You should “divorce” yourself from the situation, because you are horribly incapable of dealing with it.

  2. Hello! I read your article and loved it. In fact, I have a 2 sons and 2 daughters that have down sayndrom. My two sons are Kyle and Steve. My daughters are named Alissa and Camila. I will always look out for them!! When ever I go to pick Camila up from day care, I get lots of tantrum reports from the teacher. All of my friends think kids with Down syndrome are dirty and horrible. I go on anyway. Your list really moved me!! Thx!!

  3. I enjoyed this so much you’ve hit the nail on the head so much of it reminds me of my Jenson who is 5.Enjoy your beautiful boy x

  4. Loved your article. I have a little sister with DS. She is 59 years old and has sweetest, loveable and delightful personality. Her last three years have been bumpy, but she always has a smile on her face and never complains. Society has changed some since my sister was born so there is a better understanding of DS, in most places. My sister is a blessing to my family and am so glad she is my sister. I tend to believe that she has had a positive and loving impact on all the people she has had contact with. She was in a rehabilitation Center three times in the last three years and the staff were all sad to see her leave and always said how much they enjoyed her. My parents always treated my sister just like the rest of us. Always was made to mind.

  5. Your list has warmed my heart and given me a good laugh. I have a 3 yr old with Down syndrome and ASD. I have also experienced the liquid child you so eloquently described. If i can offer you any encouragement it would be to say kudos to you for having a sense of humor whild raising your child with medical and developmental challenges and its awesome that you recognise your daughter’s need for extra support.

  6. Thank you for being bold enough to write this. It is exactly what I needed today after a very trying day with my 2 year old son who happens to have Down syndrome as well. You are right, sometimes we all need a unicorn butterfly rainbow kitten.

  7. Hi
    I’m in the uk, my nephew is downs ,when he was born his parents were told he was”normal” and later found out he was downs ,the family was devastated ,I remember telling my friends feeling devastated and crying (and I’m only the uncle!)…………. But now.. If he wasn’t here I would be devastated and crying!

    He is the best thing that has happened to me personally and my family,
    challenging
    Yes, but to think his kind are killed before born destroys me
    How dare they!how dare they!
    the most vulnerable and the most beautiful . Really if only they knew.
    It’s their loss

  8. Your honesty is beautiful and so is your little boy.

  9. Hey Kat – great list. I’m not a mum, but I am a little sister to a guy with Down Syndrome. He was a bad-ass tap dancer, an amazing puppeteer, and one of the suavest people I’ve ever met – what his paint-melting smile turned into. Even though we lost him eight years ago now, I still miss my rainbow butterfly unicorn kitten of a brother so so much and I still worry that I wasn’t a good enough sister, but your list made something kind of click in me that it was okay to be super annoyed by him sometimes. And nothing will ever stop me from being proud that my brother had more chromosomes than most people’s brothers. Go you, go Parker, go Big Sister and I hope there are always adventures for all of you.

    • Thanks Jessi, I’m so sorry you lost your brother!! I’m glad it resonated with you. He sounds pretty awesome. If you ever want to tell his story, email me. xx

  10. I enjoyed your list.

    I got up this Sunday to find my so, 17, with downs, had emptied and filled the dishwasher (properly), fed the cats and the dog (after letting the dog out to pee), and had his toast ready for me to butter and put jam on. At 17 he enjoys his karate class, swimming, chatting with his peers in High School and reading “How To” books. Just a note for readers who may not think that kids with downs have a quality of life as they get older.

  11. I just had my oscar scan and blood test but before it my husband and I were already determined to keep our baby no matter how sick or how many birth defects he or she has. My family on the other hand thinks that people with down syndrome are less worthy of life and are weirdos to be looked upon. That if my baby is screened to have down syndrome I should abort him or her. We disagree. Even if we have to take care of the baby for life so be it. It is not our right to kill our baby because he or she is less perfect in any ways. Even if my baby has fatal abnormalities I will keep her or him until God decides to take my baby away. We created my baby but it doesn’t mean it is his or her fault if there is 1 more chromosome or he or she is terminally ill. So if the blood test results are bad we won’t go for further testings.

    Even if our kids are born healthy it doesn’t mean they will remain healthy. My niece has dyslexia and nephew has sensory overload, mild adhd and moderate autism. My cousin had meningitis as a toddler and now he has the iq of a child. My maternal aunt had meningitis as a kid and same thing happened to her. She worked as a live in housemaid and cook for over 50 years. Retired now. Another cousin died from a flesh eating bug in the army in his early 20s.

    As I am a Asian living in Singapore I always feel that we Asians are less accepting of birth defects. Abortion rates for birth defects are high. My sister just told me she had a friend who aborted hers at 20 weeks because of a down syndrome diagnosis. A ex friend of mine her sister aborted twice because of birth defects too. Chinese and Indian races tend to abort more promptly if the babies are screened to have birth defects while the Muslims generally keep the babies even if they have fatal abnormalities.

    I am a free thinker but I am pro life in general. I really salute you for loving your son regardless of his extra chromosome. For many parents here if their kid is born with Ds they would probably give up for adoption. If they knew prenatally they will likely abort and over 95 percent do so.

    Reading the progress of your son makes me feel better and reassures me that down syndrome kids are not monsters like what my family and most of my society deemed them to be. The support for them in Singapore is very limited and so far only 1 girl has finished her elementary education in a mainstream school. Most others must be schooled in special needs schools or kept at home.

    Thank you and I wish you and your son be blessed with good health always.

    • What a beautiful and lovely message, thankyou for taking the time to write it! Good luck with your pregnancy, I hope it all goes smoothly and have an easy birth.

  12. My friend chris has Down syndrome and shared his story on camera a while back. He is an amazing man.

    http://www.the315project.com/stories/christopher-hunnicutt

  13. I LOVE it when you go to store or antwhere and you get stres and it is not just kids it is adults too! Who should know better ! So we bought the shirt saying: BE CALM IT IS JUST AN EXTRA CHROMIZONE

  14. #5 is the one for me. I know down Syndrome Awareness isn’t important to everyone,but I expect the stairs from from children not knowing but adults.. At one point I wanted to type a memo about DS pass it to everyone that had a puzzling look on their face and sign it by saying “It’s ok to just say Hi”

  15. I share and understand your points, but a day spent with my son Fergus, is a hundred times happier than any bad day anyone else may try and push on us. If I refuse and I will always, to listen to their viewpoint, it means I have more time love and fun with Fergus. I choose not to go to dark places, as I am soooooo grateful for the son I have. Think of it this way, if you are grateful and thankful all the time, there’s no room for fear….so guess where I spend my time!

    • Just a bit of honesty. 🙂 I can write about these topics so easily these days, as there IS no underlying fear, any more. No more than I would have for any other child. And no more fear of the unknown, which is the worst fear of all.

  16. We call it jellyfish mode when our toddler does his version of #10. It’s especially fun when attempting to safely remove him from the bath or swimming pool against his will…

  17. You have really made me smile with his, thank you!
    Tell you what bugs me, over here in te UK? Not so much the liquid toddler as the liquid teenager.
    I’m still wondering when the cuteness wears off and he stops being let off so much……

  18. Oh Kat, how I wish you had been around 25 years ago when at 27 I gave birth to my 2nd son who was diagnosed with Down Syndrome! I hear you! And I so admire you for the focus you bring to being the parent of a child Down Syndrome. Unless you have walked the path you have no idea! You, my darling, have had so many health hurdles with Parker than I ever had with my little man Aaron. We struggled with him gaining weight but I was determined to breast feed even though it was so tiring for him with his heart problems but a sympathetic and understanding peadiatrition suggested comp feeding and introducing solids ‘farex’ at eight weeks saw the weight gain we were looking for. His open heart surgery was then delayed until he was about 2 1/2 yrs old. I am now the proud mum of an almost 25 yr old and he is one of the most important people in my life! Sure there have been numerous issues and I still mourn the baby I thought I was having but now I wouldn’t have missed this for the world. He makes me smile everyday. His brothers, one older and on younger, are so protective of him and are better people having had the experience of a child with a disability. You are doing an awesome job and I have said this before and I will say it again. Parker Myles has an awesome mum! Xxx

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