Max loves nursery

Quite simply Max adores nursery. A statement in itself that isn’t rare for a two year old but when we tell people Max attends nursery 4 days a week, people are often intrigued that a child with DS goes to nursery at all.

To be fair Max’s mummy working full time and the reason Max attends nursery is a rarity, with only 3% of working mums with a disabled child doing so (compared to 39% of mums with a non disabled child*) Often suitable childcare being the main issue, along with a lack of flexible employers.

In the UK, it’s illegal for a nursery to prevent a child with a disability in attending, but as two friends have experienced in recent months, nurseries can often find barriers to make it impossible for them to do so.

Max has attended a mainstream nursery since he was 9 months old and has thrived. The nursery he attends have been supportive since the start (which is why Max’s parents settled on this setting) There have of course been challenges for both parties as Max is the only child at the nursery with DS, so they’ve learnt as Max has developed.

Max not having any serious underlying health issues of course helps, although Max’s frequent illnesses has meant each one is normally followed by a period of extra medicine or change of routine that we’ve had to communicate and in trust to nursery to follow.

Max’s nursery in the main have been proactive in adapting activities to suit him. For example as Max was not standing until recently, meant nursery adapted painting so he could sit doing it and giving him the baby menu until last month as he wasn’t ready for the toddler finger food menu before.

Max is support at nursery by all his development support workers such as his Physio and Portage. They regularly visit him at nursery to monitor his progress and give advice to nursery. They all give glowing reports on each visit.

We’ve recently introduced a Communication book to update each other on observations on Max’s development, which is very important when a child’s development is so closely observed. It’s also been useful to find out when Max is pretending he can’t do something but will quite happily do the same activity elsewhere!

Lastly, why do we think Max enjoys nursery? Apart from him ruling it (all the kids know Max and every morning we have lots of kids saying hello) children with DS are known to learn better from their peers. This is certainly the case for Max who is often observed watching his friends and then trying to copy their actions.

Whilst we don’t know what the future holds for Max in terms of education, we know for the moment we have a happy two year old who loves nursery.

* Papworth Trust Disability Facts & Figures 2018

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.

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!