I feel like I'm a member of a Down syndrome sorority...

Reid had her first appointment to talk about all her upcoming appts for Speech, OT & PT....{That's Occupational & Physiotherapy- I'm finding out there is a lot of short-form medical terms I soon will become very familiar with}...I thought after Pip's eye & heart surgery we'd have some breathing time to just be, but that doesn't seem to be the case...


I'm thankful that we are being pro-active & have the resources here to help in Reid's development, but the thought of more appointments is tiring all round...I really don't know how you working Down syndrome/Special Needs Mummas do it- Well done...


That all being said I am just realizing I have so very much to learn in regards to Down syndrome...As mentioned before with Pip's other health issues taking precedence, Down syndrome was just kind of in the background...


Now, however I feel like I am being faced with it & at certain moments I am not really sure what to do...


  • When I wrote "6 Thoughts for 6 Months as a Special Needs Mum", I had such amazing feedback/support...One reader, shared in her Down syndrome journey & taught me that I have a baby with special needs & Down syndrome, not a Downs or special needs baby...

"When we had our son, Ben, someone noted that Ben is a boy with Down syndrome (not a Down syndrome boy or Downs boy) and that children have special needs, but are not "special needs children". It seems like a subtle wording difference, but after someone called my attention to it, I can see that one way emphasizes the child, and the other the disability"... Jennifer Bailey...

    What I originally wrote in that post was Pip was a special     
    needs baby, and after reading & realizing the above I changed  
    it right away...I have so much to learn on proper terminology  
    & language, so thanks for teaching me!!!


.........................................


  • I can tell at certain times when strangers are cooing over Pip that they recognize that she is bit different & might want to ask but feel uncomfortable...I really don't know what I'm "suppose" to do at this point...Do I just bust out with it & tell them, do I gather Pip up & scurry away or do I, proud as a peacock, let her shine in her cuteness & let them ponder? I've peacocking it up but would love other Down syndrome Mumma's advice on this one...






.........................................
  • I feel like all of a sudden I'm in this Down syndrome sorority- like this special club- It's kinda like when you become a mum & you see another mum at a grocery store right tired, lugging around 2 kids & you smile at her in understanding...Take that times a million when one Down syndrome mumma meets another...At least that's what it feels like for me...
    
    Take today for example...I spotted a teenage girl with Down 
    syndrome with her mum & what looked like older brother...
    I was drawn to them & "pretended" to be looking at something, 
    just to be near them...They completely ignored me, as they 
    should have...

    What I really wanted to happen, was for that mum to look at 
    Pip & recognize I'm a Down syndrome mum too & come 
    chat me up, let me ask her a zillion questions & maybe even  
    throw in a hug...But, of course this didn't happen...


    However, what is the etiquette on this? Again, what is 
    "proper"? What is respectful? What is acceptable? When I see 
    someone with Down syndrome I'm obviously going to be 
    drawn to them now - that's inevitable... Is it okay for me to 
    approach them if it happened in an organic way? To share Pip 
    & our story with them? 


    I rationalize it in my head by thinking if I had a broken   
    limb with a cast on & saw someone else with the same 
    break/cast, I most definitely would start a convo based on    
    that similarity...But, again, I'm new at this- so I'd love 
    other Down syndrome parent's advice...Have at er  
    friends- What do you do?


.........................................

It's little things like this that I'm starting to struggle with...I guess it all comes with time & you my dear friends will learn it all with me...

39 comments:

  1. I feel the same way you do, I have a son with down syndrome his name is Ethan and I hate when people or my family say that he is sick or that he is a special baby I guess I have tell teach them

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    1. Agreed...all about the teaching....Love the name Ethan...

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    2. I have a 6 year old daughter with Downs Syndrome and I love it when we are out and about and another mother of a child with Downs Syndrome stops and talks to me about Feliza. She loves it too especially when it's a Baby with Downs Syndrome.

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    3. I can totally see why someone would love that Shannon...I'm hoping for the same...

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  2. How I felt about sharing has changed as Owen has gotten older...I'm much more open and matter of fact about it than I was maybe a year ago. You do what is comfortable for YOU!!! And welcome to the sorority /posse.....we ARE cool like that. Pretty much any mom who came up to me would be welcomed with open arms. A good opening line is "I think our children have something in common"

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    1. LOVE LOVE LOVE that line Tara...thanks for sharing..

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    2. Anonymous16.1.15

      Ask for advice from other Moms - not DS Moms.
      Just raise your baby. Not your baby with DS. Go take your kid to the park - it's not a park for kids with DS! Just raise your child - that's it. The most successful parents just pay attention to their children, listen to your children, enjoy your children and spend time together as a family. Don't become drawn into the syndrome because you'll miss all the wonderful people who will love your family - because of all the nice people who make up your family. You sound wonderful and caring - learn about DS in order to support and take care of your child and then let it go......My child is an baby who is defined as 'intersex'. Would you run around the mall striking up conversations about that? No.....I don't think so....talk about dance class and soccer and getting a puppy or a kitten....let the child run their life and enjoy them. Don't 'educate' people - do you know how many times people have said things about boy/girl stereo types to me? I just agree or softly change the subject because I'm not going to spend my time worrying about the little things. I've been asked about my anatomy in public places by people who know a friend of mine who told them about my child...I'm not going to waste time 'educating them' I just say everything is fine with my family and they are busy and looking forward to lots of things....like banana splits and swimming. And it's not with a bunch of intersex kids - it's just our family and friends. Thanks - you'll do really well - you love your child

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  3. Owen is four now and I remember having the same feelings you're having right now.

    I typically don't say anything about Ds unless someone asks. I did that in the very beginning with Owen because he was my baby. For me Ds was secondary; he was (and is!) my baby first. So if they want to come over and coo, I say be a proud peacock and offer if they ask.

    When he was little, I would do the same thing as you--get close to the family with the person with Ds and hope they notice me and Owen. Sometimes they did, but most often they did not. As time has gone on, I realize that most families don't necessarily want to be singled out by some gushing crazy woman--I know I don't want to be attacked at the mall when all I'm trying to do is get some shoes or whatnot. Instead I will smile and try to catch mom or dad's eye as we make our way past. If it seems right, I'll make contact.

    Recently we were at the zoo and this mom came rushing up to me. She pointed to her infant son in a carrier and then pointed to Owen. I said, oh cool, your son has Ds? She wanted to ask me a zillion questions because her kiddo was like 4 months old, but I had the kid who was ready to move onto the next exhibit. So sometimes it's hard for the parent with the older kid to even have a real conversation when out in public.

    I did start doing this--I carry business cards with my name, my blog address and my blog email so that they can contact me if they want to talk more. You can get some free business cards at Vista Print. :)

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    1. Ahh thanks so much for sharing Stephanie...And great ideas....I can totally understand that most wouldn't want a crazy new Ds mumma running over to them...So glad for this Ds community online- it's been a lifesaver to be honest...so thanks!!

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  4. Love this post. Love this journey you share with me... (and everyone) .. Answers will come in time.. Keep doing what you are doing. People are drawn to you, wherever you go... I know you will figure this out.. Wish I could help more. Love you xoxox

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    1. Thanks Mully...Love you too...Thanks for being part of this with me:)

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  5. Anonymous24.6.13

    Tara! Jill here, your mom's friend. Just wanted to let you in on a blog of a Windsor family with a little girl with Down Syndrome. The blog is called "Chasing Hazel". Check it out. Hope it helps a little to answer some of your questions. Jill

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    1. Ahh lovely blog..thanks for sharing Jill...

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  6. I am still the same way. I ambush some friendly looking family when I notice a person with DS... and my daughter is almost 5! I found a local Down Syndrome society and we have a yearly family conference with great expert speakers and we celebrate sll the new little ones and the kids with ds get their own speakers and the siblings have their own, too. Then we have a big dance party that night. Its the best part of the year for me! Don't be embarrassed, but be ready to write down their phone number if you get a good vibe from them. They went through the same experience and most parents live to talk about their kids. Have fun!

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    1. Thanks Kimmie for sharing...I too have joined our local Down syndrome group and find that very helpful....And like you I am drawn to other families with Down syndrome...Guess no matter if your baby is 6 months or 5 years old it's there...

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  7. Anonymous25.6.13

    My son will be one on Wednesday and I find myself with some of the same questions you have. As far as when people are talking to him... I don't say anything. I am proud as I can be of my little man and I sometimes wonder if people see the ds features b/c I don't when I look at him. I just see my son. So, I don't say anything unless asked. And very rarely has that happened. I just let him shine and like you wrote in your blog... he is my son who happens to have ds. It's not the most important thing about him, so I don't make it overly important. But, I am not afraid to share if asked. I want people to see all that he can do and how joy-filled he is and we are to have him so that 80-90% of babies with ds that are aborted might get a chance b/c mom and dad were educated instead of afraid! And I value friendships and advice from people who have been on this journey before me and with me.

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    1. I feel exactly the same way...thanks for sharing....And Happy 1st birthday!!!

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  8. My daughter will be turning 19 this year! Wow time flies, enjoy every day. I have always had people come up to me, they ask if she has ds, then talk about someone they know. We also get stopped by other people with ds, that's the best...;) if I see a mom with a child with ds I go over & say hey, I have a daughter with ds too, we chat & sometimes exchange info. I live in VT, this state has an abundance of resources, I take full advantage of them all. We model how we want our kids to be treated, for example, if my daughter was having a fit in the grocery store ( when she was younger ) & we were getting glared at...I'd say " I know you'redoing the best you can babe, hang in there we'll get through it" loud enough for them to hear then smile at them....works

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    1. Awesome June...I like that...Thanks for sharing...And yes time flies soooo fast...

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  9. I always felt like I had to tell people Abby had Down syndrome when she was a baby but never did unless I knew them. It's funny how we all think we have to tell people at first. Abby turned 3 two weeks ago and these days, I am always shocked when anyone brings it up! Unlike when she was a baby, it isn't what I think about when I look at her. Except for the extra doctor appointments and therapies, we really have turned into normal kid and normal mom. You will get there, mama!!!

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    1. Amazing what time does to change perspectives...I hope to feel the same when Pip is 5....Thanks for the support!!!

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  10. Shoshanna25.6.13

    I have met the nicest people who have come over to me and said, "I see we have something in common" or just simply "My son is 13" and we both know what they are talking about. A woman approached me in the playground in my neighborhood and we became friends; years later I found my son's school on her recommendation and I am forever grateful. My son is seven, but people come over and tell me about their adult children's jobs and apartments and dating stories. It's great to have such immediate support everywhere, I guess it's one of the "blessings in disguise" of having a child with a readily recognizable disability.

    Just one other note: It's not just a sorority, it's a fraternity, too. Fathers and brothers also need to reach out and give and receive support from each other.

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    1. Thanks Shoshanna for sharing...And agree with you- Fathers & brothers are all a part of it...I'm just not sure how many read my blog- I think it's mostly woman- Either way I agree and think it should be "Posse" not Sorority....Thanks again...

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  11. Anonymous25.6.13

    I am the mother of a 5 year old boy with DS. He had tons of health issues as an infant and I was not able to deal with the developmental delays until he was 5 months old. But then we began with all the PT, OT, Speech, etc. Our Jack has benefitted so much from all the therapies. He is now running and jumping, talking up a storm and learning site words. I also struggled with whether I tell a stranger he has DS or not. Most of the time I do tell them - I feel like it raises awareness. And people will see that kids with DS are mostly just like other kids. And I always want to go up to other families who I see with DS kids. Sometimes I do - and I just say "I have a son with DS too. He is 5 - how old is your son?" It is a sororiety! Your daughter is absolutely beautiful!!

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    1. Thank you!!! Thanks for sharing...So good to hear from others who have been there & did all these "therapies" and have positive thoughts regarding them...Thanks so much

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  12. If you ever see me and my son you better come over and say hi and give me the secret handshake...you do know the handshake right?

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    1. Haaaaa Rachel....I don't...I will need to learn that ASAP...

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  13. Are you only interested in moms opinions?. What about a daddy's?

    Sofia is now almost 2 years. 8 hours after she was born I found out that having a kid with down syndrome was something that could actually happen to me. I confess I never thought that was even possible.

    The days after she was born I did the usual: cry, feel angry, sad, worried, terrified, mad, nervous, etc... Then, I did the other usual things: bought books, read all internet, trying to find out what resources I had, etc... I took my baby girl to a down syndrome help center when she was only 2 weeks old. They sent me back with instructions to come back when she get to 3 months.

    Things today are quite different: I can't wait to get home to see my girl smiling. I don't love my kid more or less because she has down syndrome, I love here because she is freaking awesome. She's no angel, she has the spirit of a rockstar!.

    I walk proud with my 2 kids, because they deserve that I look proud of them. If somebody stares, good because we are really cool people!. If they want to get closer and approach us, great. If not, also great!.

    If you feel like approaching somebody with another awesome kid, go for it. I love when I meet new people with similar situations and in my experience, parents with kids with down syndrome are quite open and willing to help.

    At the end of the day, nobody teach us how to be parents and much less parents of such awesome kids. I think that's ok. We will do things well and we will make a lot of mistakes. As long we do it with love, we'll get through.

    BTW, I'm still terrified by the future and the unknown things that might come... I just don't let those feelings get in the way of enjoying my family :)

    Here's a picture of sofia and me: http://bit.ly/11YSVgC ... and here's another of she playing football! http://bit.ly/11YSWRK

    Take care, relax and enjoy the ride!

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    1. LOVE LOVE LOVE that I have a dad's thoughts!!! And the more dads the better really- Just didn't know if any dads read Happy Soul Project but pleasantly pleased to hear they do...Thanks so much for sharing...Sophia is a beauty...

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    2. Estebanf, I love your description, (she has the spirit of a rock star), my Sam is like that, & I think we're really cool people too! Sam is 19 now, her brother is 31 ( not ds), she has a niece who is almost 5 & a nephew who is almost 9 mos. Her sister in law is her PCA! I have learned not to let fear creep in anymore because it takes the focus away from the GOOD stuff this life has to offer. Great to hear a dads perspective !

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  14. Awesome blog post, I'm so glad I found it! My little girl is 5 weeks old so we are very new to the DS journey and I can relate to all of what you posted!! I tend to blurt out to everyone and it feels awkward but so does wondering if the person I'm talking to suspects her diagnosis. In the end I know no one cares either way but it is definitely something I have to work through :)

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    1. Hiya Jenny...so glad you found Happy Soul Project too!!!! And congrats on your little girl...I know oh too well how overwhelming those first few weeks can be...I'll try to find you on facebook too!!

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  16. Love this post and I'm glad I found your blog!! My little girl is 5 weeks so we are quite new to the DS journey.

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  17. I think this "sorority" was something I didn't expect. I didn't realize how open and willing to help and chat everyone was. I have found most of the moms I meet in person are the same. I have only met a couple that are not like that. First off, peacock it! Let her personality shine! That is what we have done with Hailey. Let Pip charm the pants off of them. Most people are receptive...there are a few that are grumpy, but their loss! Secondly, when you meet another family, do what feels right. Sometimes it will be just an exchange of pleasantries and other times you will chat for 20 minutes. We ran into a fellow mom at the outlet mom this week, she has a 23 yr old daughter with Ds. She raved about Hailey for almost 20 minutes. It was hard to get away :-) You are doing great. Follow your heart and gut!

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    1. Same- I didn't expect it too- Or realize how vast, helpful & beautiful the community really was...Thanks so much for sharing...

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  18. Hi T, just stumbled across your blog :) I'm a mum to two, and my sister has Down syndrome. So I kinda come from the other side - Em is 18 months younger than me and I have known nothing but DS my entire life :) But I too still see people - usually mother's with kids who have Down syndrome and I want to talk to them, to tell them about her and how amazing she is (married, working, etc.) Throughout my life I've just about experienced every [awkward] social situation possible - people approaching us, people ignoring us, people asking questions, people walking the other way, people trying to say nice things but it coming out badly, etc, etc, etc. I say just go with your heart and if you want to ask or have a chat - do! You'll probably find most people are willing to have a chat (and spy on a gorgeous baby) if they realise that you want to. Good luck, sounds like you have two beautiful little ones x Lucy

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  19. Hi T, just stumbled across your blog :) I'm a mum to two, and my sister has Down syndrome. So I kinda come from the other side - Em is 18 months younger than me and I have known nothing but DS my entire life :) But I too still see people - usually mother's with kids who have Down syndrome and I want to talk to them, to tell them about her and how amazing she is (married, working, etc.) Throughout my life I've just about experienced every [awkward] social situation possible - people approaching us, people ignoring us, people asking questions, people walking the other way, people trying to say nice things but it coming out badly, etc, etc, etc. I say just go with your heart and if you want to ask or have a chat - do! You'll probably find most people are willing to have a chat (and spy on a gorgeous baby) if they realise that you want to. Good luck, sounds like you have two beautiful little girls x Lucy

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  20. Anonymous21.9.14

    You can definitely say that your little girl has Down Syndrome if you feel that they are wondering..as for approaching mums of older children with DS I say DO IT because I want to hold your baby!! Babies with DS are the cutest. x

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