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! 🤦‍♀️

What on earth is Portage???

In the two years that Max has been born, I have learnt so much about a world I never knew existed. It’s a world full of the different types of therapies and support that exists to help a child classed as having additional needs, reach their full potential.

We are full immersed in this world as Max currently receives support from physiotherapy, speech and language (salt) the specialist hearing teacher for the deaf, a Communication group and Portage. The majority you can kinder work out what they are about but the one I get most asked about is Portage. Which is no surprise as it’s name doesn’t give much clues!

Portage essentially is play therapy, designed to support a child through play to work on key skills. It was pioneered back in 1969 in the town of Portage, Wisconsin and because it’s proven to be so effective, it’s been adopted by many countries around the world.

Max has an amazing Portage therapist, who visits him once a fortnight at home, as well as regularly at Nursery. She brings a massive bag of toys every time for Max to explore, which have been handpicked to whatever skill we are working on. Max knows this bag of toys is amazing and as soon as it arrives, he tries to delve into it to find out what treats are in store.

At the moment Max is working on signing “more” and “stop”. This week he played with bubbles and made shaving foam cakes to encourage him to join in, get messy and learn at the same time! Max loves these sessions and gets so much from them. What’s not to like about shaving foam cakes!”

We are also allowed to borrow toys from Portage, which is fab as it means we get a regular supply of toys that we don’t have to buy that entertain Max. Technically it does mean at the grand age of 2, Max already has homework each week!

But jokes aside, who doesn’t love homework if it involves playing? Everyone gets involved at home with Max’s homework like his big sister Amy. And for Max he’s just any other two year old, learning through play.

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?