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.

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.

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.