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!

Year 1 so far

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We are 3 weeks into year 1, I’m still not sure how that’s even possible, feels like only yesterday Teddie was starting reception.

I had my doubts about year one, my gut told me we may possibly see some struggles but so far Teddie has yet again proven me wrong.

Teddie has settled in the class better then any of us could have expected, he now has his own desk and work area. This has made such a difference, Teddie needed that place within the classroom, somewhere he can call his own. Teddie is spending more and more time within the class something he didn’t do a lot of in reception. 

Teddie loves to dip in and out of things, if the other children are doing an activity on the carpet Teddie will join in but if it all gets too much for him he will take himself to his table to do independent work with is 1:1.

One of Teddie’s many talents is he has an amazing ability to listen to what’s going on elsewhere in the classroom, even when he’s not be participating in it. To others, it may not look like he’s even listening but he would be able to repeat everything that has been said even though he’s not fully engaged and working on his own activity- this boy amazes me.

Last year Teddie found the beginning part of the day difficult so he always entered the school through the office and went straight into the sensory room completely avoiding the classroom, this was something I wanted to change this year. I hoped Teddie could go straight into his new classroom but still have access to the sensory room later on in the morning. So far Teddies has been able to avoid entering the school via the office & sensory room and has been eager to go straight into his classroom like all the other children do.

It took a good 2 weeks for Teddie to stop asking to go back into the reception classroom, he always said:

“this classroom finished (pointing with his middle finger) go back to Teddie’s class in reception”

At first, he didn’t fully understand why he couldn’t go back but after we told him he’s a big boy now and the smaller children needed the reception class Teddie completely understood and liked the idea that he’s a bigger boy now.

There’s still one major concern we just cannot overcome- the toilets!

Towards the end of the 2nd week, I spoke with Teddies 1:1 and assumed Teddie was using the toilets in his classroom only to find out he wasn’t. Teddie would go to the toilet in the morning once he woke up 6.30, 6.45am then again once he came home at 3.15pm, this is an incredibly long time not to go to the toilet! We decided the only option was for him to use the only toilet we know he’ll use and that’s in reception.  There are 5 toilets to choose from in reception, Teddie will only use the 2nd toilet on the left.

Once we told Teddie he could use the reception toilets the following day he went twice!! Teddie was made clear that he is welcome to use this toilet but we go to the toilet say “hello” then go back to year 1, he was absolutely fine with this.

We are having a few teething issues with pick up, half the class go to the afterschool club Teddie is becoming very upset as his name isn’t being called out for it. He has no idea what afterschool club is, he’s just sad he isn’t being picked for it.

Everyday Teddie overcomes an obstacle without any issues or fuss at all, we are so proud of him we could burst! 

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

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School holidays, the end is near!

I’ve been counting down the day till I can tell Teddie he has school tomorrow, he’s asked nearly every day if it’s a school day. 
6 weeks off school is a looooonnnnnggggg time to be off when you have no real concept of why you aren’t at school.

There are a few things I’m really not going to miss when the boys (Teddie) are back at school. Like when you’re taking 5 minutes to yourself in the garden and u hear what every parent dreads……….the sound of the lego box being tipped over!!

Picking lego up should be used as state punishment or classed as a job as its a bloody pain in the arse & takes forever to pick up. There’s always one piece you’ll miss but you need not worry as you’ll find it when u stand on the bastard thing when u sneak into the bedroom check on the child!

Out of the 3 boys, Teddie is actually the only one we didn’t have to keep amused throughout the holiday. He makes his own games up, normally coping whatever he’s watching on YouTube.
He loves nothing more than flitting between rooms like a Tasmania devil leaving wreckage as he goes. I often just sit and watch wondering what is going through his amazing little brain, he’s always so happy in whatever he’s doing.

Every day Teddie has turned the lounge into a soft play area with the cushions off the sofa. All 3 boys think they’re on an all-inclusive holiday & Harvey’s using the house like a hotel, the end is near!

Teddie is super excited about returning back to school. I think he will go straight in without any issues but think the 2nd week in we will see a slight change in him. The realization of school and the routines he has no control over.

Teddie has the same amazing 1:1’s, without them again this year I would be a nervous wreck, I think Teddie would be as well.

This time last year Teddie was about to start school, he could hardly say more than a handful of words fast forward a year & we cannot keep him quiet. He’s made so much progress it’s unreal but I still have the same worries and fears.

The children in his class & school are all so lovely but there is always the worry as the other children get older their understanding of being “different” grows. Teddie has never seen himself as any different from the other kids his age, I’d hate another child to change that.

Alfie said a while ago a new (year3) boy came through to the dining hall with his trousers round his ankles after finishing the toilet. Alfie said Everyone was laughing at him. I really hoped Alfie didn’t laugh as well, he said he didn’t but in the heat of the moment he probably copied everyone else and laughed.
The first thing that crossed my mind when Alfie told me this was this will more than likely be Teddie in a few years.

This boy did what came naturally to him, he sought out help when he needed it,  I’m sure it was more the situation and the surroundings that made the children laugh over his inabilities to pull his trousers up but it still must have been upsetting.
If this was Teddie we would probably laugh with everyone else not fully understanding what they were laughing at.

Laughing and teasing is uncalled for, it can have a real effect on all involved but especially the ones being laughed at.

We all go through things as a child we’d like to forget. I remember one girl always reminding me I had bumps in my hair when it was up in a ponytail. She always had this perfect ponytail, something that I hadn’t ever noticed till she sought out to remind me how imperfect my hair was. It became a constant daily reminder of how awful my hair looked, after a while, I stopped wearing my hair in a ponytail as I began getting really annoyed with my mum for leaving bumps in my hair.

Although this never really had an adverse effect on my life, at the time it made me change how I thought others saw me and how I saw myself, I can only imagine how awful the poor boy felt when most of the dinner hall laughed at him.

If there’s one thing you can teach your children please encourage them to just be kind, let them know that the things they say and do can really hurt others even if they think they are only playing. Explain that all children come in all shapes and sizes & we are all different in our own way.

How much better would the world be if everyone was just that bit kinder to each other?”

– Holly Willoughby

As Teddie starts yet another chapter in his life, we continue to support him as he finds his way through this world.

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

 

 

 

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.

 

 

 

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! 

To my beautiful Bear.

 

 

To my beautiful Bear.
 

This morning wasn’t a good day for either of us, I hate to see the beautiful eyes of yours filled with tears.

You tell me you’re sad and you wanted to stay with mummy but I still took you to school, I took you because I know how much you love it.
 
You have no idea why you are feeling the way you feel, I can only imagine how that must feel, you just know something isn’t right.
 
I tell you mummy loves you every day because I really do. when I ask you if you love mummy sometimes you say No or like last night you said; 
 
“Eyebrows, nose, eye’s, mouth” while touching my face.
 
You tell me you love mummy in your own way- like when you put both your hands on my face and just look at me or when you hug me for no reason.
 
You may never say the words “I love you” you may not even fully understand the concept of love but I know you do love me, I see it in your eyes every day.
 
You didn’t want to take your favourite PJ’s off this morning, mummy knows how much they mean to you. 
I know how much you love being at home if you had your way you would never leave the house but you have to baby.
 
I heard you screaming out my name as I left when you went out the room, I didn’t want to leave you, I left you because you work better when mummy isn’t with you.
 
Mummy would never leave you unless I knew you would be ok, you just needed to break the cycle of the last few days.
 
Mummy will always be your voice, I will always stand up for you and I will always love you.
Know that we all love our Bear and wouldn’t have you any other way!
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