When the differences start to show

Max is now the grand age of 2.5 and firmly a toddler. No doubt about it, with his own views on what he likes/ dislikes and the ability to reck a living room in 30 seconds.

He is also a toddler with a disability, that as the older he gets, the more it becomes evident of where his challenges lie. This has no more evident than during June which has been jammed back with meetings and appointments for Max.

Firstly the 6 month paediatrician review where his general health is checked. Great news no major issues and a good reminder of how far he has come (born on the 0.2 line and now just under the 25th thanks to his new love of food!)

Next an appointment to commence his 2 week trial of an Bada Hearing band to help him with his moderate hearing loss thanks to glue ear,something people with DS are prone to thanks to their small inner tubes.

Lastly his 6 month TAC meeting (Team around the child) where all the professionals that work with him get together to review Max’s progress over the last 6 months and look ahead to review new emerging themes. Although the meeting itself is positive, just by having it highlights the gaps in Max’s development to his peers, something we are all programmed as humans to be obsessed about.

But what June has also highlighted is quite how loved Max is. From his community paediatrician who comments how cheeky and cute Max is when he is climbing onto her chair (something he’s apparently not suppose to do until he’s walking fully independently, but clearly Max hasn’t read the script) To the Health Visitor who has never met Max (that’s a while other story) but observes how warmly everyone speaks about him and she can’t wait to meet him.

But most importantly is the acceptance among his peers. Who include him in their games, chant his name if he’s come in late to nursery from an appointment and fight over who sits next to him at food time, even though Max has developed an tendency to steal food from their plates (did I say he has a new love of food!)

So although development charts have their roles, what’s most important is that Max is a well loved boy who is finding his own path.

Celebrating milestones

When you have a child classed as having a development delay, you often find yourself celebrating the oddest of milestones and this has certainly been the case with Max .

Yesterday I celebrated Max having this first Happy Meal to himself! An odd celebration you may think and certainly not something we celebrated with Max’s big sister, but it signifies a journey we have been on with him.

It signifies a long weaning process with Max, as we have tried to introduce him to new food textures and consistencies. A journey that has been made longer than we would have expected by the various colds/ chest infections etc that have all meant Max hasn’t been keen on moving on from the comfort of the food he has been used to.

Upto recently we have had Max friendly food with us at all times as we couldn’t be sure that he would eat the food when we are out and about. We’ve also had support from Speech and Language for 6 months as they monitored what he was happy/ not happy to eat. The conclusion from the experts and us a like, was, he would move to the next stage when he was ready.

So this Happy Meal shows how much he has come on and although we still need to have a back up with us just in case, we can normally find something for Max to have off the menu. Although he still thinks fish fingers are the work of the devil, so plenty of food still to conquer! 🤦‍♀️

Max finds his feet

At the grand age of 26 months, Max is finally finding his feet, so to speak and cruising around furniture, or using his walker.

Max’s journey to being on his feet has been somewhat slow because he has both hyper-mobility and also low muscle tone. Essentially he’s extremely bending and his muscles are naturally weak, which makes it all jolly hard to walk! In fact Max is so hyper-mobile even his toes are bendy, something his paediatrician commented on she hadn’t seen for a while- trust Max to be that child 🙄

To get Max to this stage has taken many hours of physiotherapy since he was 4 months old. Max has a love/ hate relationship with his physio. He loves it when she goes and hates it when she arrives, as he knows it’s going to be hard work! Seriously Max’s physio is amazingly patient and skilled at what she does & we are lucky to have had such early intervention.

Max has also been reluctant to walk as he had developed his own modified crawl, which he uses to scoot around and get into trouble amazingly quick. No wonder he was in no rush to walk!

Back in August 2018, with Max showing absolutely no signs of wanting to put weight on this feet, he was given a stander to help develop his hip strength, as well as the rest of the muscle tone required to stand.

It’s fair to say Max wasn’t impressed and pretty much after his first session in it, he decided to pull himself onto his feet on his own. Almost as if to show two fingers to what he thought about the stander!

Max has also been given some funky blue Piedro supportive boots to give his weak ankles some strength. Again he was lucky to get these on the NHS, as they cost £120 a pair! Mummy had been dreading picking some as she remembered back to school and a boy in her class having some not very nice ones. So we were relieved to have a choice of lots of designs and colours. Probably blue with laces wasn’t the most practical pair to pick but Max does get lots of complements about them and there is no doubt who’s shoes they are at nursery, when most of the boys have the same Clark’s shoes!

So 6 months on Max is coming on really well with his walking, increasingly wanting to walk, albeit holding on two hands. Giving us back ache and making it very slow in the process to get around. But just like any toddler this is a stage they all go through, just a bit later for Max.

More alike than different

Max has a big sister called Amy, who is adores and will regularly call out for her when he wakes up. The feeling is mutual as she adores him after having to wait a while for a sibling as mummy’s tummy didn’t work properly (Max is a rainbow baby)

Amy has always been the one that can comfort Max the easiest and quickest, which started after his first extended stay in hospital when he decide to go on hunger strike because he wasn’t liking the quality of milk service in hospital.

But even though they adore each other they don’t always get on. Max is getting to the perfect age to wind up his big sister and she doesn’t always have the patient to torrelate her younger brother. A perfectly normal sibling relationship!

But she is his biggest fan and likes to support Max and his friends with Down Syndrome where she can.

Although Max has an extra chromosome that his big sister, they both are two peas in a pod as they both like curries, have the same sense of humour, are fiercely independent, watch Nativity! And of course like the iPads! To coin a phrase, they are more alike than different.

Snot, snot everywhere…

Max has a cold. A hazard for most two year olds when you’re in the germ pit of hell that is nursery, but for Max his extra chromosome makes a cold a bit more problematic.

Firstly his lower immune system makes him more susceptible to catching germs (not helped that lots of kids like to hug and kiss him) Secondly he has extra small internal tubes which makes snot harder to get rid of, so he gets bunged up, making his oxygen levels drop. Thirdly he produces more snot than most adults, let alone other two year olds!

What Max does have in common with most toddlers is;

  • Hates having his nose wiped and acts like his snot is being being robbed from him when you do!
  • Cannot blow his nose. How many toddlers can blow their noses and how do you explain to a two year old how to do it?
  • Snot it sticky stuff, particularly if it’s dried onto a face. Superglue has nothing on the super powers of snot!
  • Likes to share his snot on occasion, particularly on Mummy’s clothes and ideally when you don’t notice until you’re at work and it’s dried on.
  • Irritable when he has a cold and NOTHING mummy or daddy do is right
  • Can be right as rain one moment, charging around the house and then next wanting cuddles and milk because he suddenly remembers he has a cold 🤦‍♀️

Let’s hope we have a early spring this year and the cold season finishes soon!