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.

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

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!

Max’s new level of cheekiness and a dirty bottom

One week on from Max getting glasses and he has totally surprised us and loves them! Well “love” might be a strong word and he certainly doesn’t “love” putting them on but he’s definitely appreciating a whole new world since he can see more clearly and even cried last night when daddy took them off him for bed!

To be fair if you haven’t been able to see up close since you were born, it’s probably a revelation to see the world more clearly. With his new eyes on the world Max is taking in people’s expressions, looking at books and even trying a few makaton signs!

Being able to see more clearly has given Max a further zest for life and chaos! The latter was demonstrated yesterday when he was able to work out how to take off his nappy which contained a rather nasty present for mummy. He thoughtfully left this for mummy to find in the middle of the living room and crawled off, with a rather naked and dirty bottom 🤦‍♀️😂 Good job Daddy has a carpet machine.

Max gets glasses

The day has come that Mummy and Daddy has been dreading, Max got glasses! To be fair we’ve known for a while that he was long sighted (He can’t see very well close to him, but no problem watching the tv!) and he’s been having check ups to see how his sight would progress.

At the last check up, despite Max’s best efforts not to comply with the eye test (which two year old does?) the optician found his eye sight hasn’t got any better and decided Max needed glasses ASAP.

Off we toddled to see Richard the Dispensing Man who told Mummy, Max qualifies for Tomato glasses. These glasses are made designed especially for people with an extra chromosome and have the bonus feature of being indestructible. This is a very important point as Max is likely to be very rough with them…. any guesses how long it will take until they are thrown down the toilet?!

Mummy spent a long time choose some very nice frames with cars on them in the hope that Max will like them. This is a bit ironic as Max probably can’t see the cars on the glasses unless he’s wearing his glasses, which means he’s unlikely to ever see the blooming cars!

We’ve been told to ease Max into wearing them. So fair he has whinged/ sounded like he is being murdered when they are put on, but then seems happy with them until he remembers he’s wearing them! For example silly mummy did just that taking this selfie and as soon as he saw himself with them, they were thrown across the table! So based on Max’s encounters with hearing aids and his reaction so far, it’s going to be a bumpy ride 🤣

In the meantime when he does wear him, we think he looks rather cute. What do you think?