Loosen the reins…..

Teddie is off on a school trip today……..without me!

As much as I wanted to go with him today I have tried to take a step back and start to let him experience things without me even though my anxieties are getting the better of me at times. Teddie was under the impression I was going on the trip today, every time he mentioned me going I just tried to divert the conversation onto everything but me going. This morning Teddie burst into our bedroom and said;

“25th April, its the school trip today, Mummy you can do your work after lunch and come with Teddie on the school trip, deal? (puts out his hand for a handshake) A deal means yes”
Gareth and I burst out laughing as he was a very matter-of-a-fact about what was going to happen, I replied with; “Pancakes for breakfast?

Teddie was slightly upset as we walked to school, he thought he was getting the school bus from the village bus stop- always a logical a thinker this boy, once we got into class he was fine. I dent down to his level and told him to have an amazing day and to stay with Mrs Henderson at all times, Teddie had the most beautiful response, he put both hands on either side of my face and said;
“You have a lovely day mum, you need to look after the dogs and Doddie (Harvey, who’s at school lol) and do your jobs” Holding back the tears I kissed him goodbye. It’s hard to let go of the reins but I know he’ll be ok and if he isn’t it’s a learning curve for everyone.

During the Easter half term, Alfie and Teddie stayed at my sister’s for a sleepover, I wasn’t keen on Teddie going, however, he was sooooooo excited about it;
“On the 17th April sleepover at Aunty Em’s house”
Teddie was counting down till the sleepover so I couldn’t crush his little heart and tell him he’s not going. I had no issues with him being with my sister, my issue was their dynamics are completely different from our’s even though my family know our routine and how we do things they only know how we do it at our house. We live our life without even thinking about it whereas others do not see things as we do, for an example, my sister said she was planning on having a garden day with the boys, they can all play while she cuts the grass. What she had forgotten was, Teddie, cannot cope with the noise of a lawnmower had she put it on he would have made a frantic run for the house and possible not gone outside while he stayed over or ever again as he would have made an association of fear to her garden.

My sister had also mentioned taking the boys to the park the following morning, as she said it I felt physically sick with the idea he was out without me, again it’s not that I don’t trust my sister I’d be the same if Gareth took the boys to the park and he’s their dad! In that second every scenario went through my mind I had visually made a missing person’s poster for ITV news and knew who to call if he goes missing, I’d use my radio connection to get the word out there, I also ponded on what picture to use for the police as we have so many lovely ones of him………..This is all RIDICULOUS I know but it’s a process I need to go through in order to leave the house lol.

With all this worry Teddie had an amazing time at the sleepover and at the park, he didn’t want to come home he had so much fun. For such a long time I have been Teddie’s voice and made decisions for him when he couldn’t but Teddie has really changed these past few months, I cannot explain what’s happening before our eye’s. Teddie’s choice of vocabulary is astonishing at times I wonder where he’s heard the things he says. He is putting everything into context and choosing to use describing words during conversations. Teddie is a logical thinker, he takes after me for this, he also seems to have a reply for everything of late when I tell him to “Shush” his response is; “Do not shush me mummy no one is sleeping” Last week I told him he could wear his superman socks, I said “wow, Teddie, you’re Superman now”, his reply was;
Get serious mum” Have we got a teenager already??

All we have ever wanted was for Teddie to experience life as Harvey and Alfie have, now Teddie is communicating better I honestly think this will all be possible. Although we are not naive to think that things do not constantly change, what works today is not the same for tomorrow or next week, however, for now we are heading down a path that couldn’t be brighter.

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

Making the change

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If there’s any advice I would give to parents who are just starting their journey with or towards a diagnosis it would be this:
The diagnosis at this stage isn’t for your child it’s for you as parents, your child is who he/she is and a diagnosis isn’t going to change that or help them in any way (other than school) it’s down to you as parents to make that change.
The dynamics of your lifestyle need to change, not solely around your child but adaptions need to be made so everyone can live in peace.

We certainly found it hard adjusting our family dynamics, with two older boys and jobs we hoped Teddie would just slot into our routine but unfortunately, that wasn’t the case.
We cannot and may never be able to rely on Teddie to make sure he has everything he needs for his day as we would be setting him up for failure, although at 5 this would be an ask regardless of an additional need. As Teddie’s parents, it’s down to us to make sure he has everything he needs accessible for his day out readily and waiting for him so when I say Teddie go get bag and shoes he knows where they will be and he’ll feel he’s accomplished what was asked of him as the slightest thought of failure can result in a meltdown.

Fight, fight, fight for your child, I often say to parents you’d never let a person physically hurt your child, so don’t allow them to mentally hurt them. There is no difference between the two when it comes to neglecting your child due to their disability, the pain and hurt are just the same.

Stand proud and be present, show the person you’re meeting with you know what you’re talking about, they may well be qualified in their field but they are by no means as qualified as you are as you live this job day in and day out!

Even on the hardest of days never let your child see how you are feeling as they will only mirror your behaviour and make the situation worse.
We have all been in the situations when at times the right thing to do would be to shout and tell your child off but you are just pouring more fuel onto the already out of control fire. I’ve perfected the inner scream down to a tea now, there are times when I’ve wanted to shout, scream and cry but as always I need to have a “happy face” as it’s my smile that clears the cloud over Teddie when he’s in crisis.

Talk about how you are feeling, everything you are feeling is completely normal and trust me we have all thought it! If you can try to attend parent workshops do, there honestly not there to tell you how to be a parent in-fact you can gain some insights on how other parents manage their routines and feel supported at the same time.

Love and support your child every day, always be their voice and never apologise for who they are.

After diagnosis.

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Yesterday Gareth and I were invited to an after diagnosis talk (forced selfie above) at the child assessment unit- CADU.

We were asked how Teddie was and if we had any questions- Of course, I had some questions.

  • Is a specialist school right for Teddie at this stage?
  • EHCP related issues
  • Anxiety related problems  

I would like to say our questions were answered but felt that we were slightly pushed towards other agencies rather than answering the questions herself.

In a nutshell, the meeting was to hand out leaflets and be told, Teddie is now getting discharged from the unit. It honestly felt like we’d waited for 17 months to be seen, get a diagnosis then handed some leaflet and wished good luck.

What we would have prefered was an honest talk where someone tells us they understand what we are going through. I wanted someone to say it’s bloody hard work and some days are going to be worse than others but we will get through it.

For us, we weren’t really after much help but it made me realise that other parents might need it so below is our honest parent ASD tips.

Parents top tips

The autism spectrum is a wide one, what works for one child may not work for another- in fact, what works for Teddie one day may be obsolete the next.

As autism parents, we needed to deal with Teddie diagnosis before we could help him, we needed to fully understand everything in order to make sure Teddie has everything the world has to offer.

Parenting an autistic child can be challenging at times but we honestly wouldn’t have our Bear any other way! 

Snow days aren’t always fun days……

Well, we weren’t expecting snow in March that’s for certain!

It honestly feels like half term but without the added expensive, other than the boys eating us out of house & home.

Having snow is very much like the hottest day of the year (other then it being the coldest) everyone heads over the county park for hours of fun, but for us we haven’t been able to join.

It’s taken Teddie 4 days to go out in the snow, even when Gareth & I had a snowball fight in the garden with Harvey & Alfie Teddie wasn’t bothered in the slightest. Teddie’s fear of getting wet overrides the enjoyment of having fun in the snow.

Walking to school on Monday brought a challenge in itself. Teddie had new school shoes but wouldn’t allow them to get wet so we walked in his wellies- which is fine I hear you cry, however Teddie will not allow you to change his shoes once he’s at school, new or old ones.

We have spent the week segmenting phonics using alphablock pec cards, drawing, crying, and eating half a ton of bread!

This morning Teddie saw I was getting his pants and socks out, he came up close to me and said;

“Teddie stay with bubby (mummy)”

Having even a few days off school I fear we will be back to square one with his transition. The first day back to school after half term is normally fine but Tuesday onwards he’s normally very unsettled, this could possibly be the same next week.

Cabin fever has certain set in, I haven’t been able to get anything done as Teddie likes the laptop on, only Godsend is he never wants the Tv on!

I am well and truly over the snow, I’d like to be able to leave the village without fear of not getting back in but most of all I need the routine back for Teddie.

Leaving the house has always been a battle for Teddie if he had his way he’d stay at home in his rocket PJ’s all day every day!

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

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!

The A word………

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A question I am always asked is whether Teddie is aware he’s any different from his peers, my answer has always been the same,

“No”

Teddies confidence has always been refreshing, without it I think he would be a completely different boy.

Teddie is unfamiliar with unkind words and name calling, I doubt he has any concept of them if a child said something to him as he’s never been around that environment. Unless there was physical contact, ie pushing Teddie would continue to play around them. There will, of course, be a time when Teddie is exposed to this bully like behaviour, I only hope this never hinders his confidence.

Teddie will happily approach new children and always tries to join in on their game, especially if its chase.
The difference between Teddie and the other children is Teddie has no concept whether the children want him to play with them, most of the time Teddie isn’t playing with the new children, he’s actually playing alongside them. If the children ran off without him he would happily run with them thinking he is joining in.

This week Gareth and I caught up on the TV series The A word. The story follows members of the Hughes family, who seem to lead a normal existence until they receive some unexpected news. Communication problems with 5-year-old son Joe Hughes lead to a diagnosis of autism.

While watching The A word I noticed a lot of similarities to our journey, we went through the motions of saying

“he’ll get there”

Although there are many similarities we have never hidden behind Teddie having special needs, in that respect, we are complete opposites.

last weeks programme, Alison Joe’s mum forgot to charge his iPod which he listens to all the time, Joe’s iPod runs out of battery in the car on the way to his new specialist school. This completely changes the dynamics of Joe’s morning resulting in a difficult transition into his new school for Joe and his mum. I sympathized with her as the slightest change to routine can make or break Teddie,

I love the series but what annoyed me was how quick Joe got a placement into a specialist school, most families I know have had to go through legal proceedings to get a placement.
I know it’s only a programme but I would have liked the series to have shown the struggles us families have to go through in order to get what our children are entitled too.

I have made more PECs cards this weekend, Teddie is still showing signs of being unsettled, even at home. I have placed social stories on our routines and the school transition around the house so he knows whats happening. I have also printed a plan & completed board for Teddies 1:1 to try, if the day can be planned ahead Teddie will feel less anxious if he can see whats going to happen (hopefully)

Life with a Bear has its up’s and down’s but as always we wouldn’t have him any other way!

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