The Not So Terrible Two’s (Part 2)

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Here’s the second post about two-year old Poppet, as promised.  Once again, I’ve used some of my journal entries to tell the story.

At some stage, we’d been told that the difference between kids with Down syndrome and regular kids would become more noticeable as they grew older.  It turns out this was an accurate observation, although at the age of two, there were only two main differences that were we noticed: Poppet started walking when she was almost three and toilet training was around the same time.

(I need to point out that I rarely compare Poppet to other children, even children with Down syndrome.  I learned the hard way that this is a demoralising and unfair thing to do.  When Poppet was in Grade 2, I had an enormous shock when her teacher showed me some of the work the children had completed.  I looked at Poppet’s work, which was quite below standard.  It was heartbreaking, this first realisation about what it meant to have Down syndrome and I promised myself then to only focus on Poppet’s achievements and her attitude towards her learning.)

 

For the most part though, when Poppet was two, we were able to blend in with the world easily.  I was mostly content, although there was always an underlying current of conflicting emotions.

 

6 December 2003

There was a young woman on the bus today.  She was wearing bright coloured clothes and looked quite funky.  At first glance, I noticed there was something different about her.  She had Down syndrome.  On the other side of the aisle, three schoolgirls were looking at her, talking softly to each other and giggling.  They were obviously poking fun at the young woman.  My guts, my heart were being ripped apart.  As I watched her, she displayed some behaviours that indicated she was in a world of her own and wasn’t aware of the other girls.  As I looked at her, all I could think of was my little Poppet.  Luckily, the girls got off at the next stop; otherwise, I would have said something to them, something nasty.

 

I’m the sort of person who will seek out specific information or direction only when I need it.  This was how I approached Poppet’s health and development at this age (and still do).  From the early days though, I knew that people with Down syndrome tend to have many more health complications than average people.  Their immune system is weaker, for example and it’s not uncommon for people with Down syndrome to have hearing and eyesight issues too.

Because of this, my partner and I chose to minimise Poppet’s health risks as much as we could and enlisted the help of specialists.  In addition to her paediatrician, these people included a podiatrist, a dietician, an ophthalmologist and an audiologist.  (A year later, we also started to see a speech therapist.)

Starting the relationship with specialists early was important because they were able to a) identify any issues Poppet may have been experiencing and b) help us to introduce therapies or activities that would improve Poppet’s chances of development.  (We’ve been seeing these people regularly for almost 11 years.  They now have very strong connections with Poppet, and with us.)

Mum spent a lot of time with Poppet at this age.  She focussed a great deal on Poppet’s gross motor skills development.  Mum and Dad’s house was often filled with strange-looking gadgets, such as a great big blue dish that looked like an upside down spinning top.  The objective was to sit Poppet inside the dish, which would wobble until she made it balance with her body weight.  As Poppet hadn’t yet learned how to ‘cross over’, (that is being able to reach across her body), she hadn’t learned how to balance properly, (and in fact didn’t until she was about 10).  This exercise helped her develop the muscle strength needed to balance herself.

Poppet also started to go to early intervention at this age, which was conducted by an organisation called EPIC.  EPIC provided a program that incorporated specialist teaching, speech pathology, occupational therapy and physiotherapy for children with a developmental delay.  We learned a great deal from the staff at EPIC, who worked every day with children like Poppet.

 

4 May 2004

Poppet loves being with Grannan, (my mother), and Mum loves being with Poppet.  I wonder sometimes though if Mum isn’t being too driven when it comes to helping Poppet grow and is missing ‘just being’ with her.  When Poppet was born, Mum was emphatic when she said to me that she was going to have an active involvement in her education.  Well this has certainly panned out.  I’m glad Mum has the input from the people at EPIC.  It gives her some structure I think.  I’m looking forward to the day when I can stop working and start getting involved in these sorts of things too.

 

At the advice of her podiatrist, we’d buy special shoes that were high over Poppet’s ankles.  Even though she hadn’t started to walk, they gave her greater stability when she stood up and toddled about.  If the shoes had laces, I’d replace them with bright, funky ribbons.

 

10 September 2004

I can’t wait for Poppet to start walking.  She’s really close.  She just needs to find the motivation to do it now, I think.  She loves dancing to music, which she does just standing in one spot and bobbing up and down.  I can’t wait.

 

In many ways, Poppet was just like any other two-year old and was starting to develop her own personality in response to her environment, the people she met and her family.

 

4 March 2004

We’re at a beach house in Somers.  Poppet is watching an episode of Maisey Mouse.  We’ve been up since 7.30 am.  Instead of me getting her up, Poppet came to me in my bed this morning.  She crawled out of her bed, down the hall, stood up at my bed and giggled.  This was a first and a great way to start the day.

 

Yes, the age of two was a lovely time.  Poppet was a happy and content little girl (and still is, mostly).  Yes, she had her moments of ‘melt down’, but she also had her moments of glory, as a developing young child.

I wrote this post and the previous one for Nicole, who has a little two-year old boy with Down syndrome.  I hope this gives you some idea as to how it was for us.  All the effort you put in now is absolutely worth it and all the love you have for your little boy will only grow stronger.

 

8 Comments

  • I have been reading your posts with great interest and delight. I admire you so much for the wonderful caring life you are giving your daughter, and it shows in her attitude to people, as I have expereienced. She is a lucky child to have two such intelligent and caring parents, The legalities of her adult life could prove to be such a minefield for so many. I look forward to enjoying many more posts. I have always admired the dedication and love of parents with children with disabilities and after reading your blog, I admire them even more.

    • Thank you Robin. I’m glad you’re enjoying the posts and I really appreciate your observations. There will be many more stories to tell.

  • So many memories. Love Ma

  • Thank you. I’m writing this threw tears. Why I don’t know but I understand how you feel and also still feel quite scared. I have often said lately I wish I could keep him this age forever. A little selfish of me huh. I really can’t think of the future etc as it makes me sad, I have to keep taking each day as it comes.
    I love reading about Poppet and your journey as a family. My Mum sounds like yours.
    Once again thank you. I hate reading about down syndrome, it is nice reading your blog and getting information from someone who has gone and are going through it. How was Poppet’s eating?

    • I understand what you mean. I don’t think it’s selfish to want to keep your child at a stage that is known, happy and easy-ish to manage. What it says to me is that the future looks scary, and I admit, when Poppet was that age, I didn’t know if I could cope. For me, I believe I was still grieving when Poppet was two. In fact, this didn’t change really until she was at least seven and I could see her potential. Mind you, there isn’t a day that goes past when I don’t feel a pang of sadness. But this is amidst many more happier feelings.
      The future is full of unknowns and yes, challenges. BUT, there are also many happy times to look forward to and triumphs too. And believe me, the triumphs will be all the more special because of the effort that’s required. Looking back, it was important for me to have a) a non-child interest (for me it was work), and b) support. If there was a blog like this when Poppet was two, I would have asked my friends and family to read it so they could understand a little about what it’s like. Maybe this might be something you could consider too.
      As for Poppet’s eating when she was little, well that was one of the most frustrating times. She used to eat very simple foods, partly because that’s what we fed her and partly because she wouldn’t try new foods. Her daily diet looked like this, mostly: Freedom rice flakes and soy milk for brekkie, vegetables and two minute noodles for lunch and also for dinner. She would have fruit under sufferance and would eat yoghurt periodically (again soy yoghurt, made by Kingland, really yummy). I might write a post about food ’cause I reckon that’s the one thing mums get hooked up on and with a child with Down syndrome, there are many additional frustrations. There’s something very primal about wanting to feed your child and when they don’t play along, it’s stressful, distressing and worrying.
      Just keep doing what you’re doing. Love your little boy and let the future take care of itself…

  • Hommus…… another staple of Poppet’s diet for as long as I can remember…..in a sandwich!.
    Nicole, as someone who has watched Poppet reach milestone after milestone, and being someone with an “average” child, I have been in awe of Poppet’s parents’ and Grannan’s devotion to her development…….. There were times when I didn’t see her for a while, but was then blown away by the change in her…… you can’t step away, but do listen to those who don’t see you often. They are the ones who will tell you that what you are doing is worthwhile…… I remember Poppet’s mum thanking me one day for a simple comment about how much Poppet had developed since I had last seen her….. this confirmation made her mum smile with hope and me realise that what those of us with average kids take for granted is down to the efforts of those around these beautiful children…. enjoy this time and take pleasure in the little things….. the big things will happen and be noticed when you least expect them, then you will know the future is not necessarily going to be so scary…..
    And for you my friend, i am still in awe, i still love to watch her grow and develop, and i am proud to be a part of your journey xxxxx

    • Now, it’s my turn to have tears. Thank you my friend.

      • Thank you. Yes milestones are huge in our family. I couldn’t imagine my life without this little boy. Every time I look at him I smile. So maybe why I feel guilty for feeling scared or how I really don’t understand why I feel the way I do sometimes. When I look at him I forget those scary and uncertain feelings.
        Thank you

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