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!

Autism Awareness Month

April is Autism Awareness Month, although we are an advocate for autism every single day there are still many people who do not fully understand what Autism entails or do not want to know. As a family, we threw ourselves into everything that surrounds autism, we changed every aspect of our life in order to make it a better one for Teddie and us all.

Our journey started 3 years ago when Teddie was 2, although he hit his developmental milestones (early in fact) his speech was the one thing that was delayed. As Teddie got older his lack of communication started to hinder him more and more and I was at the end of my tether and could not take any more of him constantly pulling me towards everything he wanted so we decided to seek out professional help in the form of speech and language. 3 years later he has never had active speech and language due to the endless waiting list and lack of resources in our area, everything he has achieved has been on his own merit and the preservation to want more (an obsessive mum helped) Over the years I realised the issues Teddie was facing was more than speech and language, noise was the hardest thing for him to cope with he couldn’t be around anyone who cried, was loud or became over-excited. Noise looked to be like a pain shooting through him, he could not handle it and became very disorientated when subjected to it.

We decided to share our autism journey opening and publicly even before we received a diagnosis as we wanted others to see how we managed our life with a child on the spectrum as well as having two neurotypical children. I’d love to say it’s been easy but it hasn’t been, it has been hard and testing on everyone especially on Gareth and I but Teddie is not to blame for this, it’s children as a whole (If you didn’t already know they are hard work!) Lately, I have really been seeing things through a different perspective- a lot of what Teddie is experiencing has nothing to do with his disability it is “normal” behaviour for a 5-year-old. It is very easy to think everything he does is due to his diagnosis but I am finding he is doing more and more things as his brothers did which has been lovely to see. Teddie still struggles in certain situations more so when he doesn’t know what is happening or there’s a long wait for an activity to start but he is participating more and more in class which is amazing.
Sharing our journey is also awareness for autism in our local community when Teddie started school we asked parents whom we knew to share a post I had written about being kind and teaching your child that all children are different, I was so worried the children in his class would have an opinion on him especially as at the time he was completely nonverbal but they were all amazing and still are.

There many small minded people in this world who choose not to understand the complexity of autism, we have family members who have never asked about Teddie’s autism, never encouraged him or rewarded him for his brilliance. The first thought would be to react with anger and annoyance however, I feel sorry for them and at times think they are jealous of Teddie especially his academic achievements. It’s these people whom I want Teddie to have an understanding of, these people will never give you the accreditation you deserve now or in the future, have them in your life but keep them at a distance.

Life on the spectrum has it’s up’s and downs but we are at a place in our lives when we really don’t have to think about it we just know what to do or how to approach a certain situation without worrying too much about it.

Teddie is a kind-hearted lad with a massive personality who we couldn’t be prouder of if we tried.

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

Merry Christmas

This photo just melts my heart, I know I say it all the time but I couldn’t be prouder of Teddie if I tried. This was Teddie’s first nativity as last year he couldn’t handle it- so much so he still struggles with the school hall even now. Teddie had a slight blip at the beginning of the play as something wasn’t where it normally was but it was sorted in no time.

Seeing Teddie centre stage singing and dancing was like a dream come true for me. My face was hurting so much from smiling, he only did one song but he bloody smashed it!

School plays are always a bit bitter-sweet, as much as we want Teddie to be involved in them at the same time I’m filled with dread he’ll have a meltdown in front of everyone while it’s being recorded for all to purchase. As, much as I really do not care what people think I don’t want to put Teddie through it.

I honestly was dreading the last few weeks of school for Teddie but he handled it so much better than last year. The end of the term can be a struggle for all children let alone Teddie, it’s been a long-term and everyone is exhausted from the constant change to the daily routine.

The boys have all finished school for Christmas, the first day of the school holiday’s has begun and we are staying in PJ’s all day.
Teddie has been on Christmas countdown for weeks, but the last few days he’s been super excited as the days get fewer. We decided against getting chocolate advent calendars this year for the boys instead we opted for a wooden countdown wheel, I think it’s this that has got Teddie so excited. I cannot wait to see his little face Christmas morning.

On Friday we are seeing Teddie’s paediatrician for the last time, we were due to see her 2 months after receiving his diagnosis but in fact its 2 weeks short of a year due to the ridiculously long waiting list. It annoys me slightly that we will be discharged as if we ever need to see a paediatrician we will need to be referred to again. Although we have waited forever for an appointment I cannot wait for the doctor to see how much Teddie has changed since she last saw him, to think a year ago he was non-verbal now we can’t keep him quiet. It’s amazing what difference a year can make.

Every day Teddie faces a new challenge, we don’t always know how to deal with them all but we always get there in the end!

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

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.