Merry Christmas

This photo just melts my heart, I know I say it all the time but I couldn’t be prouder of Teddie if I tried. This was Teddie’s first nativity as last year he couldn’t handle it- so much so he still struggles with the school hall even now. Teddie had a slight blip at the beginning of the play as something wasn’t where it normally was but it was sorted in no time.

Seeing Teddie centre stage singing and dancing was like a dream come true for me. My face was hurting so much from smiling, he only did one song but he bloody smashed it!

School plays are always a bit bitter-sweet, as much as we want Teddie to be involved in them at the same time I’m filled with dread he’ll have a meltdown in front of everyone while it’s being recorded for all to purchase. As, much as I really do not care what people think I don’t want to put Teddie through it.

I honestly was dreading the last few weeks of school for Teddie but he handled it so much better than last year. The end of the term can be a struggle for all children let alone Teddie, it’s been a long-term and everyone is exhausted from the constant change to the daily routine.

The boys have all finished school for Christmas, the first day of the school holiday’s has begun and we are staying in PJ’s all day.
Teddie has been on Christmas countdown for weeks, but the last few days he’s been super excited as the days get fewer. We decided against getting chocolate advent calendars this year for the boys instead we opted for a wooden countdown wheel, I think it’s this that has got Teddie so excited. I cannot wait to see his little face Christmas morning.

On Friday we are seeing Teddie’s paediatrician for the last time, we were due to see her 2 months after receiving his diagnosis but in fact its 2 weeks short of a year due to the ridiculously long waiting list. It annoys me slightly that we will be discharged as if we ever need to see a paediatrician we will need to be referred to again. Although we have waited forever for an appointment I cannot wait for the doctor to see how much Teddie has changed since she last saw him, to think a year ago he was non-verbal now we can’t keep him quiet. It’s amazing what difference a year can make.

Every day Teddie faces a new challenge, we don’t always know how to deal with them all but we always get there in the end!

We love our Bear and wouldn’t have him any other way

All things Christmas……

Santa-Claus-carrying-sack-of-gifts

Since I can remember Christmas has always been MASSIVE in our house, as a child, my dad would cover the ceiling with decorations while my mum perfected the tree.

I remember my parents getting farepak hampers, the excitement from my sisters and I as we unpacked some manky tinned ham, jars of pickles, chutney’s & all Christmas related foods (how times have changed) this excitement was all part of the lead up to the big day.

Now I have my own herd, We love Christmas just as much as I did when I was young, we put our tree and dec’s up super early as we just cannot wait until December- well I can’t.

Alfie is super excited about Christmas, he’s done his list, although not really asked for much (thank god). Harvey’s 14, we’ll leave that one there, then there’s our Bear.

Teddie doesn’t have a traditional Christmas gift wish list as he can’t and never asks for anything, of course, we wrote a letter to Santa on his behalf, but…….

…..what would he and other children diagnosed with special needs ask for Christmas?  The list might be much simpler than you think:

  • Toys, of course, every child would like toys even if they cannot ask for them.
  • A day without feeling lost when the slightest change to routine occurs.
  • The ability to use the toilet without fear and anxiety.
  • A day out without name calling or strange looks.
  • The ability to play with other children without being prompted.
  • A day being treated the same as the “normal” kid

All the above are completely achievable if we all put our mind to making equality happen for people with special needs.

It saddens me that Teddie doesn’t get Christmas like the others do whenever he sees anything Christmas related he says

“Christmas”

It could be anything from a Christmas tree to lights, a red bow or a polar bear,  it’s all Christmas to him but it appears he’s not sure of the purpose or concept. If he woke up and everything was packed away he wouldn’t feel disappointed.

The quote from A Christmas carol sums it up perfectly: 

You keep Christmas in your own way and let me keep it in mine. (in a good way though)

As long as Teddie is happy over the holidays, who are we to judge how he interprets it.

 

We went to our local winter wonderland with my Alfie, Teddie, my parents, sisters and their children, we had been looking forward to it for weeks, it never crossed my mind Teddie wouldn’t like it.

Teddie’s patients for waiting is around 5 minutes tops so when the shop worker told us where we were in the queue for the Santa train was at the 1 hour 20 minutes mark, we very quickly left the queue- didn’t wanna see Santa anyway.

As we walked around seeing all the lovely lights, dancing stuffed animals (not real ones) Teddie seemed to be in his own world. He was slightly distracted by a small trolley and a carousel ride but once the five-second ride finished and he was over the trolley I could tell he was hating every second of it! 

Alfie, Teddie and I ended up drifting away from the large group we were in so we could walk around at our own leisure without waiting for the family to decide on their purchases.

Teddie kept saying

bome time” (home time)

It was so busy there, kids were excited & running around everywhere it was manic for me let alone him! As much as I wanted to really enjoy the day I couldn’t as I could see how distressed Teddie was becoming. Gareth was working so it was all for me to keep the calm for Teddie but have the enjoyment for Alfie. It was becoming harder for me to manage the situation on my own so I decided we would pay for the crap we brought and sit in the car until everyone had finished looking around & enjoying their day.

Days like Saturday are days where I feel I have failed Teddie, I should have known he wouldn’t have liked it, in all honesty, it never crossed my mind, I got swept up with all the Christmas joy and hoped Teddie would love it as much as we did- tried to.

This week I’m aiming to is call every large department store, zoo & garden centre in our area to see if they are offering a quiet period where children with any disability can come and enjoy the festivities they have to offer without the queues and large crowds, If they don’t offer such thing I’ll suggest it for next year.

We love our Bear and wouldn’t have him any other way!