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!!!


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  • 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...






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  • 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?


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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...