Our funny Bear

 

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As I put Teddie to bed he made that pretend to cry noise as he wanted me to lay with him, something daddy does every other night but mummy doesn’t fall for the same tricks.
I close the bedroom door and return to the garden where my parent’s, Gareth & Alfie is still sitting, we could all hear Teddie calling out for me still pretending to cry so we ignore him.

Out the corner of our eye, we see a big brown bear appear at the upstairs window, Teddie.

“Mommy (he’s American lately) It’s Teddie, I’m crying”

We all look at each other and bust out laughing, to which Teddie thought was highly amusing so then started to sing Tommy Thumb.

 “Mommy finger, Daddy finger, brother finger from his window”.

He was about to go onto grandad finger but as I got up Teddie legged it back into bed like we hadn’t just seen him, the little shitbag

What made this situation so funny was this time last year Teddie could barely speak 2 words.  I generally had worry and fear behind my eyes not knowing how he’d cope with what the world had to offer.

Fast forward a year we can now have a conversation with Teddie, although at times it’s limited its still a conversation he’s engaging in.

It’s the littlest comments that make us laugh out loud like;

“Cheers” whenever he has a drink with someone.

“That’s not right”  when he sees something out of place.

“Fingers crossed mommy” when we are playing Mario on Ds

“Yes, I can” when we say no thank you.

“10 more minutes” for everything we tell him to stop doing.

“Good job” to almost everything you do.

This past year has taught me that even if you have an inability to do something it doesn’t have to change who you are. Teddie has always been confident, funny, loud & proud even when he didn’t say a word now put words into the mix he’s polite, kind, caring, loving and all the above.

Teddie receives limited speech therapy, once every few months at school his successes have come from a mixture of putting in lots of work at home & at school but it’s mainly come from Teddie wanting to learn.

Teddie has a photographic memory so 95% of his learning has to be learnt from visuals. Carpet time & speaking/learning in groups are areas Teddie struggles most with as he cannot process the information like he can if he was learning from visuals

Unfortunately, as Teddie goes through the years at school the learning is taught with a teacher at the front of the class and the children listening and taking notes, something Teddie may not be able to do.

Teddie has a revised curriculum ready for September, we are hoping he can spend more time in the classroom learning his way but also seeing how the other children learn. Teddie often likes to dip in & out of class learning if something takes his eye or if he knows whats being taught.

                                  


 

Teddie’s EHCP is now finalized ready for when he starts year one, although not much will change now the school will now receive a lot more money to help cover Teddie’s revised learning.

I read recently that schools are having their budgets cuts, a decision the government feel is a good move. The Guardian reported that 80% of schools are having to cut numbers of teaching assistants and support staff due to the new national funding formula for schools in England.

This is something that has affected our school resulting in only 1 teaching assistant per year rather than 1 per class. These changes open us up to comments such as;

“A teacher has 30 children to look after but special needs child has their own 1:1, how is that fair”

“My child needs help but he/she isn’t getting it but others are”

I completely agree there is not enough funding going into education, schools, especially our’s go above and beyond to make sure the children are not affected by these changes but the parents do not always see the bigger picture or help the situation by making comments although not always directed to us (Teddie)

What many parents do not always understand is for a child to receive a 1:1 procedures need to be met & put into place. Yes, Teddie has his own 1:1 that’s because I have fought tooth and nail for him to receive the funding he needs for him to attend school.

What many parents also do not understand is Teddie’s 1:1 will only be present in the classroom while Teddie is at the school, if Teddie leaves the school the funding leaves as well.

A special needs child does not start school and automatically have own LSA the parents needs to start the procedures months, years in advance, even then it’s down to the local authority to decide if a child warrants a 1:1. 

Our school has bent over backwards for us, for that, I cannot thank them enough but I think that due to us having the respect for each other. We could have sent Teddie into school and moaned about what should & shouldn’t be in place for him instead, we

worked together a year before Teddie even started school to get him what he has today.

Before you make judgemental comments on what one child has but your child hasn’t stop and think about the lengthy process we have been through just to get our son through the school doors every single morning. 

 

Thank you.

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There are two kinds of people in this world, those who have no impact on your life and those who change it, all the staff at Teddie’s school have most definitely changed his life.

Today we say farewell to the reception class, how is it possibly Teddies done a year at school already. We had no real expectations of what we wanted Teddie to achieve this year all we were worried about was Teddie liking school and Teddie being liked, We had nothing to worry about.

I am honestly lost for words (a rarity ) and finding it hard to write how I feel. Thinking about the effort and love Teddie has received this year brings me to tears just thinking about it.

How do you thank the people who have put their everything into ensuring your child gets everything they deserve & more, who go out of their way to just say hello or to check how Teddie is doing ok?

The teacher, Ta’s, office staff, head, senco, music teacher & Teddies 1:1 is more than just staff at a school they went above and beyond and cared for Teddie with love. They allowed him to be himself, they gave him the room to grow and become the amazing boy he is now.

We are forever grateful for everything you have all done for Teddie this year. As another chapter closes we await a new one to start, with your love and support, together Teddie can become whoever he wants to be.

 

 

 

Insights

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If there is one thing I struggle to get my head around is how autism can be seen as being “different” It’s so complex how can it not be seen as anything other than truly amazing.

For a 5-year-old to have a photographic memory, recognise complex shapes and love working with high digit numbers is nothing short of astonishing, If this is “different” then sign me the hell up as I would love to have these abilities! 

Autism comes in all shapes and sizes which is whats so amazing about it. The spectrum is so vast no two children are the same.

Autism normally presents itself by the age of 3, however, parents may notice signs as early as 12 months. For us, Teddie hit all his milestones when he was a baby, it wasn’t until he was over 1 we noticed a real change in how he saw the world. It honestly felt like one day he was ok then all of a sudden he wasn’t.

Teddie walked early, would high five his brothers, made eye contact with you, was so happy & even said a few words then it was like a switch had been flicked, he was a different boy.

Throughout my studies, I come across lots of theories on why children behave in certain ways (neurotypical and ASD children) Children all develop at different stages during pregnancy and after birth. As a parent of 3 boys, I’m still met with the need for my children to confirm but the fact is children will be who they want to be.

I’ve never felt the need to find out why Teddie has ASD. What we do know, however, is environmental factors & genetics strongly influence the risk for developing ASD. Do any of these apply to us? I’m not sure but I do ponder on a few questions.

One of the main issues Teddie faces now is recognising facial expressions and the emotions behind them. The question I always ask myself is what changed from when Teddie was a baby/toddler to now?

Studying and research have taught me infants regularly show facial expressions of sadness and happiness despite never being taught such emotions so this has to be something that is built into us.

A study I worked on a few years ago on how babies congenitally blind will smile when they are happy and cry when they are sad. These infants have never been taught or seen these facial expressions so it backs up the theory that these emotions are built into all of us. 

With this in mind, how is it possible for Teddie to be able to regulate all emotions at such a young age but find it all so hard now? Why does Teddie have empathy towards others but not towards himself?  

Did something happen for these changes to make such an impact on him? 

Even if my questions were answered it wouldn’t make a difference, in all honesty, I (we) would never want Teddie to be any different from the amazing kind-hearted boy we all love so much.

The mind works in mysterious ways & to complex for any of us to ever fully understand. No two people are the same which can only be a good thing. 

We love our Bear more than he could ever know.

 

 

 

Masking & triggers

Teddie has this ability to appear to not be listening or paying attention but in fact, he is taking it all in without us even knowing.

Teddie lost one of his front teeth last week, I hadn’t even realised it was wobbly.
We were playing in the pool when my hand slipped away from Ted’s and managed to flick his tooth with one of my fingers. Out of the corner of my eye, I spotted a small white object fly past me, yep, I had flicked his front tooth out!

After many failed attempts to put the tooth back into his gums, Teddie seemed ok with what had happened.

Teddie has already lost his 2 bottom teeth so we knew how to approach the situation. We knew there would be 1 issue we needed to avoid- The tooth fairy.

Whenever anyone mentioned the tooth fairy Teddie would just scream

No, No, No” loud!

We had never discussed what happens when the tooth fairy comes as Teddie never allows us to talk about it.

I’m not entirely sure as to why he has an issue with the Tooth fairy but when you break it down who would be excited about a strange person coming into your bedroom at night when your asleep and your parents aren’t there?

A few days later Alfie lost one of his teeth. Alfie showed Teddie his tooth and to our surprise, Teddie spoke as clear as day;

“Tooth under pillow, tooth fairy bring money”

Although Teddie cannot allow himself into certain situations he is more than happy to see others through it. Teddie was so happy at the thought the tooth fairy was coming for Alfie but couldn’t allow it for himself.

Teddie has an ability to mask a lot of his traits when he is in a good place but at times (of late) Teddie displays waves of different emotions (we call bubbling) which normally indicates something isn’t quite right for him. We can go from complete normality to back to square one where he needs to change his clothes every time the thinnest spec of water gets on him.

The last few days Teddie has come home from the school in a different T-shirt, although he is excepting of the change of T-shirt (progress) there’s a reason as to why he needs to constantly change his top. Although we may not find out whats bothering him we need to put things into place just in case the situation escalates.

Organisation is the key for Teddie, it’s hard to remember everything he needs but if we want the happy loving Teddie it’s our responsibility to ensure he has everything he needs to get through the day otherwise I feel I have failed him.

Teddie hasn’t needed his octopus or 3 minions at school for a few weeks now but when things do escalate he will revert back to them in order to bring him back up from his cloud of anxieties so I ensure he has everything in his bag just in case.

Teddie continues to push the boundaries with sensory play, you can see he wants to join in but sometimes the fear of it is too much for him to handle. He is given the time to make whatever decision he feels is in his best interest. As long as there is a towel available to wash his hands he normally gives it a go.

Teddies determination amazes me every day. We love our Bear and honestly wouldn’t want him any other way.

 

 

 

Stress, are you coping

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The constant need of wanting to do it all and to please everyone sometimes gets the better of you.

I’ve been working so hard on a presentation that has taken me forever to do, the day of presenting it was finally upon me and I nosedived.
The night before I was super organised & had everything ready. I’d made all the lunches, made crepes for the boys for breakfast, the uniforms were all out ready all everyone had to do was literally get up and get dressed- of course, this didn’t happen!

Harvey didn’t know where any of his lunch was even though it was right in front of his eyes. He went to school without any breakfast as Gareth didn’t tell him I had already made it.
Alfie was up and dressed but was playing on his PS4 (which he isn’t allowed on before school) talking to his friend so I ended up shouting and screaming at him.
Gareth was flapping over everything and just being a man who had no idea of what was happening around him.

The only one who had his shit together was Teddie, he was no bother at all even when I told him he needed to go to school in his P.E kit he didn’t question it at all, he just did it.

I dropped Alfie and Teddie off at school only to realise I’d left my laptop at home so instead of heading to my presentation I turned around and went home.

My calm and chilled morning turned into a large cloud of stress so I did what all girls do, I called my mum and cried. I was a blubbing mess – I was doing that awful ugly cry when you cannot speak through the tears. My poor mum must have wondered what the hell was wrong.

I know we (I) do too much for the boys especially Harvey who is 15. Every morning Gareth and I set our alarms to get Harvey up for his paper round. We get up to put all his newspapers in his bag then go up and wake him. We could be having an extra half hour in bed but no we are up doing his job. 

I’m a pleaser and always try to please everyone, especially the boys but sometimes I feel I’m pleasing everyone but myself. 

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I haven’t been on my anxiety medication for 5 months now, I generally feel better about not being on them but I do however have moments like Tuesday creep up on me. The medication I was on had some nasty side effects which I couldn’t handle. I find solace in crocheting and writing, this is my form of medication but lately, I can’t even fit that in.

For the past 15 years, my main job role has been a mum, this will always be the most important role in my life even when the boys grow older and leave home this will always be my main job role but of late I feel I’m in a place in my life where I’m just not sure who I am & where I fit.

Since realising Teddie has additional needs my life and job role has become one. Writing and being an advocate is something I love and will never want it to end but I am still left feeling slightly lost as to what direction I want it to lead me too.

I am obsessed with helping Teddie be the best he can be, I’m obsessed with helping others with their journey, for me I don’t think I’m ready to be anything other than that right now.

 I have 583 emails on Life with a Bear (more then I have following me) I love nothing more than reading every single one of them & sending a reply.

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Mental health can affect every single one of us, I’ve always been very honest about my anxieties but not everyone can share how they feel.  Coping alone only makes matters worse, it makes you feel isolated from the rest of the world and clouds your vision on how you think people see you.

There is always a way out from the haze that you feel you are in, please never feel you are alone. 

Mental Health Awareness week

Desensitization program…..

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Doctors appointments are like buses, there isn’t any insight then 2 come along.

These past few weeks Teddie has seen a countenance specialist & has had an assessment at EWMHS (Emotion wellness mental health service) with the aim of being offered a desensitising programme for is anxieties.

Unfortunately, the countenances specialist could not offer this programme but gave us lots of helpful tips to work on while we wait for Teddie to receive a program.

I was very doubtful Teddie would be offered a program with EWMHS as during his assessment all that was mentioned was social stories. 

“Have you tried using social stories?

How I didn’t leap over the table for this woman I really do not know so I repeated what she had said in case I had misheard her. She then started to tell me what a social story was, I interrupted her mid-sentence and said, although I appreciated her professional opinion and a description of what a social story is Teddie was past the stage of using social stories. 

I completely appreciate people study or train for years to do the job there in but unless you live with an ASD child YOU HAVE NO IDEA. It’s bloody hard work & it’s a 24/7 job, not a 9-5 job where you can leave the stress of a hard day behind you. 

During our appointment, I made it clear I was not the type of parent that takes No very well. I had my professional head on and at times was as qualified as she was. So when she has the audacity to ask me if we have tried social stories I took that as an insult. Teddie will be getting on the program as he bloody needs it.

 However, I am overjoyed to say I received a letter this week from EWMHS offering Teddie a desensitization program.

I’ve come to the conclusion that the only people parents can rely on are ourselves, we have to fight at every corner to get what our children need. I know I’m to the extream but honestly, I don’t know where Teddie would be if I wasn’t.

What is a desensitising programme & how does it work?
A desensitising programme is a type of behavioural therapy that can be used to help children or adults with ASD & Asperger’s syndrome effectively overcome phobias and other anxiety disorders. 

There are many stages of a desensitising programme. 

  • COPING STRATEGIES– Assess the child’s sensitivities, to find out how severe they are.
  • PROGRESSIVE EXPOSURE– A gradual exposure to the feared object. 

PSYCHOLOGICAL PREPARATION:

  • Desensitization works best when the child feels comfortable and empowered
  • Find the thing that upsets the child.
  • Allow the child to experience the object in a non-threatening way.
  • Listen to any concerns they have, and reassure them as best as you can. 

For Teddie, his anxieties affect him more than his inability to communicate (although his speech has come on leaps & bounds) These fears hinder him daily especially using the toilet. This is our main focus however the programme will cover a wide spectrum of Teddies fears with the end result of helping Teddie to access toilets throughout his day.

We have no idea whether this program will help Teddie with his fears all we can do is try.

We will continue to be Teddie’s voice and will always fight for what we believe in.

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

The National Autistic Society

 

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!