Reflection

How has 2017 come to an end already, where has this year gone?

The support we have had from family, friends and strangers who now we class as friends have been overwhelming.

I started writing Life with a Bear mainly because I felt like I was going insane with the behaviours I was experiencing from Teddie, I needed to vent my frustrations through writing. I never expected to get such a good response just from being honest with how I was feeling with Teddie’s journey. 

This year has brought ups & downs from having appointments cancelled left, right and centre, Overcoming one hurdle only to be faced with another, leaving preschool and starting school.

The kindness and support Teddie has received from the staff at preschool and now at school are truly amazing. Teaching is a job but caring the amount these lovely ladies do about Teddie’s well-being goes above and beyond their job role.

In the beginning of our, journey I don’t actually think autism was something I even considered, I just thought what Teddie was experiencing was a speech delay.

It wasn’t until I started researching speech delays in children I stumbled across an article on non-verbal autism, as I read through the article it was like someone was reading about Teddie, I knew in that moment Teddie was autistic. 

I’m often asked how I feel about Teddie’s disabilities, I understand why people would ask that question, I would probably ask the same thing. For me, it’s never been an issue, would I prefer Teddie not to have autism? I’m really not sure. 

Don’t get me wrong at times (most of the time lately) I HATE autism;

  • I hate the waves of distress it brings Teddie.
  • I hate the anxieties that haunt’s Teddie daily.
  • I hate the fear & sadness it brings him.
  • I hate that Teddie cannot express love or emotion like we do.
  • Most of all, I hate there’s no cure!.

As much as I have hate for autism, autism has made Teddie who he is. The love we have for our Bear takes over and will always outweigh the hate.

From the minute Teddie was born I knew in my heart he was gonna be our special Bear. I couldn’t take my eye’s off him and haven’t really since.

Teddies personality is infectious, he is so confident (considering) he lights up a room when he enters it we honestly couldn’t be prouder of him.

Parents often count down the years till their children grow up and are off their hands, I know we certainly have with Harvey (I’ve got my eye on his room). As much as I wanna push Teddie into the wide world we have to realise that maybe something that doesn’t or cannot happen.

For now, my everything is solely learning, researching and help educate people on what life can be like for families affected by autism.

We wish everyone who follows us a very Happy New year!

All about the emotions……..

feeling

 

For months we have been trying to find a way to help with Teddie’s anxieties. While we have been looking for ways to help we have overlooked the emotions that come with these issues. Unlocking his emotions may well be the key to supporting him with his current anxieties.

There are a trillion different techniques for learning and discovering feelings online & in books but implementing them is no way as easy as its mentioned.

Emotions are traditionally fractionated into six ‘basic’ emotions;

  • Happy
  • Sad
  • Angry
  • Afraid
  • Disgusted
  • Surprised

Helping Teddie express his emotions when needing to use unfamiliar toilets we may have a better understanding of how he’s feeling.

We do not understand why using certain toilets affect him the way they do, he has the fear on his face whenever I even whisper the word toilet. We want Teddie to be in control of his feelings & have the ability to tell us when he’s scared, sad or happy!

We are aiming to focus on the main 4 emotions first, Happy, sad, angry & afraid I have also added “poorly”. Teddie knows when someone else is unwell but are very reluctant to brand himself whenever he is poorly.

Visual has always been everything for Teddie, we have made PECS cards for all six emotions, the school are focusing purely on the main 4 while we will cover the 6 at home. I have made cartoon PEC’s cards & family PEC’s cards showing the different emotions.

If we make learning the emotion fun enough Teddie will know them by the end of the week, Teddie learns things at a ridiculous rate.

I will start with a word bingo game followed by saying an emotion and get Teddie to pick the corresponding card. These learning techniques have proven well in the past. Teddie loves to play word & number bingo, I’m confident he’ll love this game just as much. 

Once Teddie understands his emotions we will create the Emotions Wall, Teddie can use it when he is experiencing an emotion that he is struggling to express.

Last week we met with Teddie’s teacher, senco, specialist teacher and his EP (educational psychologist) to complete another one plan.

The specialist teacher will be in discussion with the class teacher and see him every term, the EP will use puppets to help communicate Teddie worries and fears. With these professionals helping we may have enough to apply for an EHCP next term, fingers crossed.

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!