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!

Building confidence

As a rule, I am a very confident person, I’m not afraid to stand up in front of a crowd or speak my mind on something I have knowledge in but confidence is so much more than that.

For the next 9 weeks I’m attending a building confidence course, at first, I thought this was going to be building up children’s confidence but its actually from a parents perspective, which is great as it’s brought feelings I didn’t even know I felt. Today we were asked to set some individual goals in regards to our own personal confidence, mine are the following:

  • Accept help from others- I am a very knowledgeable person with most areas of the spectrum & the psychological effect this has on people. I am very rigid with our routines as I’ve set them & enforced them so I am very reluctant to hand the reins over to someone else as it generally undoes everything I have put into place. I stop doing things as I worry what these effects will have on the children, mainly Teddie.
  • Support my son (Alfie) with his confidence & low self-worth: Alfie is the least confident boy I know, he puts himself down pretty much every day. Although we support him at home and he has help at school with his anxieties I feel he could progress so much more if he had the tools to self-regulate his owns feelings & have the confidence to speak his mind.
  • Inner confidence: Although my outer exterior tells you I am a confident person my inner exterior is telling me different. I am very obsessive when it comes to my children but not so much about myself, I pretty much put myself down at least a few times a week. I worry what people think.
  • Avoid toxic people:  There are certain people I need to avoid as they make me feel a certain way about myself. I’d say I am a very good listener, I’ll sit and allow friends/family to tell me their problems, worries or concerns but when it comes to my turn to share my feelings I’m shut down & not listened too.

I’ve always been an advocate for “It’s okay not to be okay” as parents we all feel like we are doing a rubbish job at one point in our lives- your lying if you think this isn’t the case but it comes down to having the confidence to admit this to ourselves and be able to make the changes that are needed for you to feel good about yourself.

I think building confidence isn’t necessarily aimed at parents with children on the spectrum, in fact, you do not even need to be a parent to want to improve your confidence. First impression count & by making small changes this can make you feel so much better in social environments.

The information I gain over these next 9 weeks I would love to share with you all, sometimes the smallest of change can be the breakthrough you needed to become the more confident you.

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.

 

 

 

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.

 

 

 

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

 

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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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!