Friday, 18 September 2015

The Big Step into the Land of Education

The Lodger has started his journey into the land of education!

Unfortunately due to cut backs, The Lodger was unable to receive an assistant. We were very fortunate to find a preschool that would take him to see how he would get on. The first day of school was the most nerve wrecking day and not just for me. The Lodgers support network were all equally nervous as he took the big step into education.

 I reluctantly dropped him over to preschool, helped him hang up his jacket and put his lunch bag away. I helped him walk to the table, sat him on the chair, fought back the tears and told him to have a great day.

Before leaving, I emphasised to the teachers, that I was 5 minutes away, to ring me at any stage and then I left.

I got home and spent the next 2 hours 45 minutes anxiously waiting for a call. I won't lie... I didn't clean the house. I didn't read a book. I didn't watch tv. I didn't do anything. I just sat on the couch, nervously waiting, checking to make sure my phone was working and that there hadn't been a catastrophe with mobile networks. I kept flash backing to the tiny baby who has fought for every milestone since day one. 

Finally the time arrived where I could go to collect him. The door of the school opened and there was The Lodger sitting on his chair, jacket on, lunch bag beside him, tiny compared to the other kids. I walked in and said 'Hi Buddy! Did you have a great time? Let's go home"

He clung to the chair and burst into tears. There was no way he was coming home. I promised him he could go back again and he smiled, waved bye to his teachers and came home. He loved it and got on really well! 

Waiting to go to school
First day of school

I would never have imagined that The Lodger at three years old would be doing the same thing as regular kids his age. He's opened my eyes to a world where it can be possible. I know as he grows older, he will find it harder to keep up with his peers but I think with a little adjustment The Lodger is going to conquer it.

In The Lodgers early intervention plan, our main aim is that we want him to reach his maximum potential. He obviously heard us discussing it, as he's going beyond everyones expectations!

The Lodgers teachers are amazing and very supportive. We had a meeting before he started to teach them about Prader-Willi Syndrome, making sure that everyone knows he can only eat what he brings into school and that even though he hasn't shown signs of food seeking so far, he can't be left unsupervised around food. The preschool is so structured with snack time that it suits The Lodgers routine and all has gone to plan so far. 

We are three weeks into preschool now and The Lodgers love for school hasn't changed. Mondays and Fridays are fast becoming his favourite day of the week. School is so popular that it's played in our house every other day of the week. I'll find him with his hat on, carrying his bag, telling me he's off to school. He'll organise his table and chairs with activities for Walter and the gang to do, and sometimes Mum and Dad too. 

Getting Walter ready for school

I can't emphasise enough how wonderful it is to see The Lodger happy. He's thriving and in such a short time, he's learned new skills and picked up more vocabulary. He's learned new games and is excited to see his friends and teachers. 

He's just gone down for his after school nap and I asked him what will he dream about. Usually it's horses. 

Today he smiled, looked at me, signed love and said 'school'! 

Tuesday, 15 September 2015

The Lunch Bag

The Lodger started preschool in the last few weeks. We found a preschool that have accepted him without a preschool assistant, a battle we continue to fight, trident in hand we fight on.
Anyway all he needed was a thermos lunch bag. So simple and yet these were the thoughts going through my head a few days before he set off.

I discuss with the Lodger where we should shop for his lunch bag and because it's a Wednesday and because it's just after lunch he's in a YES mood so my decisions are all agreeable.
This is a good day.

We arrive in the shop and I survey the options. He loves Frozen but I don't so I veto that. He understands. Daddies know best. He loves monsters too but it's all monsters crossed with lunches, so monsters eating and I'm not sure about how Pradar-Willi friendly that is. Then there's the happy strawberry bag with the lovely strawberry zips but I wonder if I buy that one will his teachers believe how serious PWS is if we're so casual about this type of lunch bag. Will they think strawberries are ok but other foods aren't? I'm keen to keep the lines clear.

I know this is ridiculous but Prader-willi Syndrome is ridiculous. It does things to you. You see the world in a different light. You get angry at people eating freely. Like just eating. Without caring. Just eating food and not checking the portion size or the sugar content or using the app to see how many calories are left for the rest of the day. Its preposterous! How dare they enjoy eating!

Anyway rant over we move on and we've manage to whittle it down to two. It's Minions verses Fireman Sam. The Lodger likes Minions but I'm not sure if it's just because he loves yellow (he also loves the Simpsons) and  bananas. And I'm talking REAL love. We went through a phase of giving him a banana for his snack after swimming on a Wednesday morning until every Wednesday morning he'd wake up saying nanana nanana. And let's face it swimming is enough fun without wishing it all away waiting for a banana.

Anyway my parental knowledge tells me everyone will have Minions and firemen are manlier anyway. And that's most important to a three year old.

The Lunch Bag

As I've said its a YES sort if day so The Lodger agrees with me and he walks all by himself (because he can) carrying his new Fireman Sam bag up to the checkout. He's delighted with himself.
It's a good day.
It's definitely worth enjoying the good days.

First Day of Preschool
Inside Preschool update coming soon....!

Friday, 11 September 2015

Champagne Moments

The Lodger has had a summer filled of Champagne Moments. (Thank you fellow PWS Mum for this phrase!)

The IKEA Blue Chair
This time last year, The Lodger started to weight bear. Since then, there has been daily physiotherapy and the motivation of Walter and the rest of The Muppets, the use of clever strategies to increase his confidence in using his legs rather than crawling, weekly hydrotherapy to improve his strength, the removal and relocation of furniture to encourage him to take an extra step and a lot of praise and encouragement from us and family and friends to motivate him to walk an extra few steps everyday. 

We were over the moon, thrilled to bits when The Lodger took his first solo steps in June  and with a lot of practice all summer, he can now walk independently! We have the Ikea blue chair to thank, as it acted like a walker he could push around the house. It scratched the floors but each scratch is a step taken, a reminder of the tremendous amount of work it has taken The Lodger to reach this important milestone.

The Lodger as Ring Bearer !!
Each week his confidence in his own abilities grew. He'd forget to hold on and walk over to the window to see a truck (He loves trucks!). He'd get excited that someone was at the door and walk an extra few steps to see who was there. Now, he rarely holds onto furniture, he can walk all around the house. He can carry toys from A to B. And he's getting quick..... The thud thud thud on the floor is speeding up and it's a delight to hear!! 

The Lodger & Mum dancing on the beach!
In mid August, we finally got the prescription for Growth Hormone. As with any new treatment, we were expecting a few weeks for The Lodger to get used to it. The day the nurse was arriving, I had prepared him that he would be getting an injection but it was nothing to worry about and it would make him stronger.

The minute the nurse arrived, The Lodger pointed at his leg for his injection. While we were getting trained, he happily made us all a drink from his play kitchen and kept himself busy playing with his new bear the nurse had brought him. The time for the first injection arrived and The Lodger cheered, instead of cried. It's been the same way, every day since. We spend a good few minutes calming down a wriggling with excitement little boy before injection time and as any other PWS parent knows, time is precious when GH is out of the fridge! 

Within a few weeks, The Lodger's overall strength improved- from the tone of his body, to  increased vocal sounds and he has more energy, a lot more energy! 

His speech has improved. The Lodger is really trying to put words together and is relying less and less on the use of signs to communicate his needs. His vocabulary is building everyday. His latest phrase is 'Good boy'. 

Just today we were out for our walk and his mission was to walk to the next tree. He did it and turned around proudly to look at me and to announce 'Good Boy'! 

Growth hormone injections have quickly become part of our bedtime routine. In a funny way, it has become part of The Lodgers play routine too. Soon we are going to have oversized stuff animals around the house, as The Lodger WALKS around injecting them all with his toy screw driver! 
Giving injection to Dog

It's been a wonderful summer. 2015- The Summer The Lodger Walked!