Holidays with Mummy and Daddy!

Here are some snapshots of some of the fun times we got up to over the Christmas - New Year period. Robin had the stat holidays off but had to work a couple of days in between, while I had the whole time to hang out with our little man :-). Forgive the long post below with lots and lots of shots, but we really made the most of what little time we had!

Here he is trying out his new Christmas magnetic boats from Granny and Grandaddy in his paddling pool.....

Playing ball with his gorgeous sister Ruby.....

Heading out and about on the town with Mummy and Daddy, and looking GORGEOUS!

Insisting in climbing the Smith & Caughey stairs over and over again :-)

About to go with Mummy to feed the ducks at Motat.....albeit a little impatiently :-)

At the park he did a bit of "duck duck duck" talking.....even though not actually directed at ducks per say, but hey close enough! Sorry about the camera movement in the video - the "ducks" were very very keen to get close to us so we had to move/stand up a few times....listen carefully though, and you can hear Nate saying "duck duck duck".....

Tired boy, worn out from ducks and needing a drink!

Looking sharp in his fish tee, just like my Grandaddy's. Here He is about to head off to Ponsonby library with Mummy......but a quick play with his cars before we go :-)

Selfie in the sun having a drink in Ponsonby

Back hanging out at home in his undies! Busy little man....so many toys, so little time :-)

We went over to Waiheke for the day on the 31st December to celebrate Granny and Grandaddy's anniversary (48th) - along with Chris and Norm, Michael and Claire, and second cousin Sophie. It was a FUN day playing at Granny and Grandaddy's house! Major excitement for Nate, lots of baby-signing at Sophie, plus a ferry ride and a bus ride to boot! :-)

Rushing around playing with Grandaddy!

And with Sophie!

Keeping the Grandads on their toes!

Playing up to Grandaddy's camera!

And on New Years Day.....we went for a walk down Ponsonby Road, followed by a quick swim in his pool (bit of a tight fit with Mummy in there too!), and some indoor playing while modelling his Wiggles tee. Number one wiggles fan! :-)

Me and our gorgeous boy!

We also managed a late morning, impromptu swim, at Wynyard Quarter during the week. We had headed out for a few hours fun of maybe a walk and a stop for a coffee/cake.....only Mummy and Daddy forgot the buggy, Mummy's hat, AND hadn't actually planned on any swimming, so had no togs or towels. Yep, super prepared parents of a toddler!

However Nate saw the pool with the other kids in it, and that was that! So then we tried to only go paddling up to the knee, but he wasn't having that! Cue groaning and grunting and a mini tantrum starting. And that's a challenge with a non-verbal, nearly 22month old. So basically....... Nate won.....one very sodden nappy, lots of squeals and 'chatting' to other kids in the pool, and a very happy little BooBoo. And a tuckered out one afterwards!

We also managed a trip to the local playground and park with Nate's smart-trike....we haven't quite got the steering right (seems to be locked on the child-steer setting), which is a bit of a pain given Nate can't steer, which made it a little harder work. A job to fix it later this week. Anyway he loved it, and especially the swing at the park...

And here he is on the last day of our holiday period....looking SHARP and helping (alright then, watching) Daddy sort out the garden. A work in progress...retaining wall to go in, tigerturf to be layed, planting to happen, and one large sandpit to be installed for you-know-who (not Robin). And then we finished the day off with a swim at the local Grey Lynn paddling pool, and a gourmet pizza from Ponsonby Central along with a glass of cider. Yum! Just the way weekends should be :-)

So.....it's been an awesome week!

But while not wanting to dwell on anything other than how great the week has been, there were a few times over the last week or so, where we were aware of some of the challenges Nate might face, or even where he has challenges now, versus other typical kids his age.

The purpose of this blog is not to brush over these concerns or leave them out - we intended to capture the highs, the lows, the observations, the fears, the 'everything' that we can think of. Not only is it to share Nate's T9M journey with family and friends around the world, but also so that other future T9M parents to come, might find it a useful source, beyond the limited and highly confronting medical research that exists so far. (And we know of at least three other new T9M families who have done this so far, which is just awesome. In fact we had the pleasure of meeting the latest NZ T9M family with baby Lily-Grace for lunch at our place late last year, and in late Feb we hope to host the NZ T9M reunion).

So while we accept Nate's diagnosis (well most of the time!), we understand that it is not realistic to assume that there will be no further medical or developmental issues, and it seems appropriate to include any heartache, concerns or fears that we have around those, because that is in fact, a reality of this journey.

Nate's current non-verbal status makes communication a challenge, reasoning or explaining why he has to wait in a line to see Santa (not that he had any concept of Santa), or for a swing to free up for him at the park, or why he can't go for a swim, or even coping with other kids in the paddling pool (where he was pretty anxious and upset for sometime), was difficult for him. He can be pretty demanding and impatient when he wants something too. There is a lot of loud grunting and impatient gesturing, and when unsettled by a situation, there lots of repeated waving and blowing kisses at people to get them to go away, whilst crying. Not the easiest to deal with at times, and even the times where he is happily waving goodbye (repeatedly), it can be embarrassing if you or they are not actually meant to be leaving!

We do realise that this is in many ways not abnormal behaviour for typical toddlers. Which is greatly comforting! However it has the potential to be much more of an issue with Nate as he grows. Talking to other T9M parents, with kids that range in ages from babies to adults, there are often behavioural issues (resulting from cognitive function and/or communication challenges). These can range from pretty mild to pretty severe.

Knowing this - and coupled with the fact that Nate doesn't 'look' like he has any obvious disabilities - gives me some concerns on the potential future to come. It worries me that people around us, or the general public, might not understand or accept Nate's potential behavioural or communication challenges. And certainly his own ability to understand and manage these, could limit social opportunities for him, opportunities that as a parent you really want your child to have. Hopefully we'll find some great ways of supporting Nate with this if it becomes an ongoing issue - while also managing our own personal reaction/feelings to any responses from the general public who may well just (wrongly) see a disobedient, uncommunicative, or wilful child. Talking to other trisomy families though, they seem to figure this part of the journey out, so I guess that we will too :-). I'll keep you all posted on that!

So....in summary.....we are very thankful to have a boy as fabulous as Nate, and that he is doing SO unexpectedly well physically, and we will keep our fears in check :-). We have had a really amazing 2014 and holiday period with Nate, and we are REALLY looking forward to a further couple of weeks late Jan / early Feb, to hang with him again 24/7 - we have one week with his sisters, and the second week over at Waiheke. We also have swimming lessons starting soon (great workout for hypotonic tone), which we hope he will LOVE given his recent discovery and love of paddling :-). Happy new year everyone!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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