Life on the spectrum……..

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When I look back at my first blog, I said

“life with Bear can only be described as unpredictable”.

Teddie has come on so much since my first blog but in all honesty life on the spectrum will always be unpredictable as every day is different, he may be ok with one thing today but can be an issue tomorrow.

Teddie inabilities to communicate have never really hindered him as much as you would think it would.  Teddie’s vocabulary has improved enormously since we started his journey ( he is now stringing 2-3 words together) but still, his anxieties get in the way nearly every day.

The class toilets were out of action on Tuesday, Teddie has major toilet anxieties and will only use the 2nd toilet on the left- This was one of the toilets that were broken. By the end of the day, all the toilets in the class were out of action. Teddie went 7 hours without going to the toilet as he was so frightened to go near the other school toilets.

We had a plan in place to put a photo of Teddie on the door of the toilet he uses for a few weeks then move the photo to another toilet door in the hope this will encourage him to use the other toilet. We had to act on this quicker than expected, but the result wasn’t a good one.

Wednesday morning Teddie was reluctant to get ready for school, Alfie left without us which is unheard of! Teddie kept saying; 

“No toilet! No toilet!”

I managed to get him to school where we were all very pleased to see the toilets in the class had been repaired……….thank the Lord!!!

This is still an area we need to try to resolve, for now, Teddie can happily wee away in the 2nd toilet on the left.

Yesterday Gareth and I attended a parent afternoon in Teddie’s class, it was so lovely to see him happily playing with his friends in the playground, felt for poor Mrs.Turner (Teddie’s afternoon 1:1) running around after him, it’s definitely classed as a workout!

Although it was lovely seeing Teddie joyfully playing, I came away feeling slightly despondent. Teddies differences are quantified depending on the activity, on this occasion after tiding away (he was reluctant to help) all the children headed in the class for a storey, Teddie didn’t join in at all.

Teddie was by no means segregated, he was in the classroom playing with play-doh and focusing on his fine motor skills with Mr.Turner, Gareth & myself. Teddie became slightly distressed when we said it was time to pack away, Teddie reached out for his PECs peanut ball card which is in the sensory room. Mrs.Turner allowed Teddie 5 minutes in the sensory room where he happily jumped around watching the parrot image projected onto the wall.

As much as these sensory breaks are vital for Teddie I keep questioning if a mainstream school is right for him. Adaptions will always be made for him but the curriculum is what it is, you have to conform in order to succeed. I’m not ruling out Teddie staying in mainstream school but we have to look at the bigger picture, although this year is going so well year 1 is more structured and learning levels are increased. If Teddie cannot recite words from a book, shapes and count to a million he fails it all.

I never under-estimate Teddie, his wanting to learn is so refreshing and normally does the opposite of my worries, for now, we are more than happy with how everything is going, Teddie has the best support at school, we are honestly so lucky.

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

  

 

 

A diagnosis….

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We are over the moon & jumping for joy, finally, we have the answer we have been waiting for!!
After a year since seeing Teddie’s paediatrician, yesterday she clinically diagnosed Teddie with autism.

It honestly feels like a weight has been lifted off our shoulders, although we always knew Teddie had autism actually hearing it come out of a professions mouth after all this time was music to our ears.

I have read stories of parents waiting as long as we have for an appointment only to be fobbed off with helpful tips and advice, then a year later they pick up on a diagnosis. I didn’t want that for Teddie- this fight has always been for him & getting everything and more that is available for him. 

It was always made clear to us Teddie didn’t need a diagnosis of autism, he would still receive a certain level of care because he is non-verbal and the form of communication he uses (PECs) but for Teddie’s goals, aspirations & his future having a diagnosis ensures he receives the help and support throughout his school years & life.

Gareth and I will need to attend a meeting in a month or so where we will be given the official diagnosis, for now, we are happy with a verbal diagnosis.

The wait is finally over, and a new chapter begins……..

Autism Helpline 

Just another day……

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We have a poorly boy!

Yesterday and this morning were particularly hard as I had to try to explain to Teddie he has to stay at home as his cough had got the better of him! 

I’ve used his Pecs cards again this morning to show him he’s staying at home as he has what he likes to say a

“poorly sore”

Teddie seemed to understand what I was getting at- or he could have just run out of patience & just tolerated my rabbiting on about “poorly sores”

Monday Gareth and I had a meeting with the school senco & Teddie’s class teacher. Between us, we completed Teddies one plan. (One Planning is based on the principle that planning should start with the person and must have regard to the views, wishes and feelings of the child, child’s parents or young person, their aspirations, the outcomes they wish to seek and the support they need to achieve them, SEND Code of Practice: 0-25 years, 2014, Section 9.21).

At the end of every One plan, we were asked what our goals and aspirations are for Teddie’s future. Of course, we would naturally say just say for Teddie to be able to talk but there certainly is a bigger picture that even us as parents miss at times. Between us, we set some end for years & future goals.

Every parent wishes their child could experience everything the world has to offer including us but I find it really hard to express how I see Teddie when he is older- can he not stay our baby forever?

Whenever Gareth voices his views on Teddie he would tell you the only issue is Teddie’s lack of communication.

Gareth’s would tell you:

“If Teddie could speak he would tell us his worries and fears & it would be easier for us to help him”. 

I completely appreciate Gareth’s opinion, however, Teddie’s worries and fears along with his lack of communication has to be seen as a whole and not separate issues.
If Teddie could verbally communicate would he still have the same worries, anxieties, obsessions & rigid thinking? I feel he would, but he would use words to express himself better about his fears.

Since my last blog, (It’s just not good enough) I had been asked to speak on the Dave Monks BBC Essex show. He very kindly raised our concerns over the waiting time to see CADU (Child assessment development unit) and the dispute over the funding. 

Essex County Council has since been in talks with the North East Essex Clinical Commissioning Group & found a solution- the unit has been reinstated until the next financial year.

We are not quite jumping for joy, I’m still not confident Teddie will be seen by April, he turns 5 in May and CADU only see children under 5- there is a chance they won’t see Teddie at all.

Our local paper also covered our concerns with waiting times & the problems we are facing resulting in the lack of support we are receiving. (see link below)

Teddie has an appointment with his paediatrician on Monday, I am hopeful she will be able to offer us another pathfinder so he can get the help and support our Bear is entitled too.

Colchester Gazette

It’s just not good enough!!

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As the whole house was fast asleep last night (dogs included) I was wide awake annoyed about this letter we received!

Just short of a year ago Teddie was referred to CADU (child assessment & development unit) 11 months later we are still no further forward with no appointment in sight as the commissioning of the child Assessment & Development unit has temporarily been put on hold. 

How the hell can that be possible, how can children be made to wait that long only to be told the service has been put on hold because they want to make cuts, for a child to wait that long surely that shows a need for the unit??

I understand there is a process children have to go through in order to receive a diagnosis but why can’t the child’s paediatrician just be able to give a diagnosis, after all the referral has to come from them, surely they are more than qualified?

The level of special needs care in our area is nothing short of diabolical!
2.5 years ago a referral was made for Teddie to see speech and language, in all that time Teddie has only ever received one group course covering a 6 week period (once a week)

I introduced Pec off my own back having covered it while studying. Teddie see’s a therapist once in a blue moon but only to see what level of PECs he is working towards. We are very lucky Teddie’s school are on the ball with PECS, they are enjoying using it and have witnessed Teddie’s confidence grown since he started in September. 

Teddie’s paediatrician called this week and has asked to see him again this month. I wonder if she’s aware we are still no further along then the last time we saw her a year ago.
With no appointment in sight and Teddie getting closer to being 5 we will need a new referral as CADU only see children under 5, I can only guess how long the wait is for that!!

It goes without saying Teddie has a label of special needs as he is unable to Communicate but at times I feel Teddies been handed the shit stick, he has slipped through every net there is, I feel the system has completely let Teddie down!

In my opinion, I don’t think Teddie is aware he’s any different- he’s so confident & never hides from life- for that, I am in awe of him! 

Having a label does not define you, you are who you so embrace it, I know Teddie does!

 

3 weeks in…..

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We have IPEA funding people!!
Individual Pupil Resourcing Agreement provides additional resources to schools to support an individual pupil’s needs, the funding ensures schools have sufficient resources to meet the needs of a pupil with High Needs. We applied for IPEA in July, finally, it has been awarded!

Teddie’s transition into reception could not have gone any smoother, we had a few issues with lunch cover the 2nd week but they were ironed out soon as they arose.
Teddie is eager as ever to get into school, it’s so refreshing to see how happy and engaged he is.
Teddie’s teacher and LSA’s are angels sent from heaven, the time and support they have given Teddie is astonishing. I tell everyone who works with Teddie the approach is everything for him & first impression certainly go along way in Teddie’s book.
I honestly feel at ease and relaxed knowing Teddie is in safe hands while he is at school.

Pecs is working really well in the school setting, Teddie has even got changed for PE, something I never thought he would do! With the added support from his teachers and watching the other children, he did it, he actually did it!!!IMG_6349 (1)

I’m kinda feeling slightly redundant the last few days I’ve tried hard not focusing all my time on Teddies needs while he’s at school and more on my own, it’s surprising how much organising & time Teddie requires just so he can communicate!

Teddie is very particular (obsessed), although he is not adverse to change he likes to keep to routine as much as possible. At school, Teddie looks out for me at the end of the day, I wonder how he would be if one day someone else picked him up. Gareth collected him from preschool once- he cried and cried!
I want to try and take a few steps back from Teddie, allow him to make his own choices and not rely solely on me! A few weeks ago I would have never allowed myself to think about easing off but dealing with my anxiety issues I feel more relaxed about certain situations.

I am my own worst enemy, I’m sure I’m not the only parent (mum) who rants about having to do it all, kids, house, jobs, dogs and now add studying into the mix, I have so many offers for help but I never take anyone up on their offer as although I want the help I don’t- make’s no sense I know!
Trying to write when Teddie is around is so hard, like now for an example All I am currently hearing is the ‘I’m a gummy bear’ song blaring out of Teddies kindle, instead of the normal head-butting version we have what sounds like a cassette tape (showing my age) being played in slow motion!!!! Will add the link below for you all to appreciate or to block it from your devices before your child stumbles across it! 

Have a good day, people……

The gummy bear song 

Teddie’s mind-numbing video

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I’ve asked for help!

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I put my hands up, I’ve asked for help!

Trying to fall asleep with the thought of your son wrapped in barbed wire, head stuck in between climbing ropes or getting out of the school are all thoughts that race through my mind as I lay my head these past few nights! I know these thoughts aren’t rational I think them because anxiety changes the way that your brain interprets and stores information.

Obsessive-compulsive disorder (OCD) is the thought (“obsessions”) that you simply cannot get out of their head eventually they adopt behaviours, known as “compulsions,” For me, I always thought that something terrible would happen to the boys, never me only ever the children. I would call in sick at work (sorry girls) because my mum was taking the children out for the day- if I didn’t go to work the children wouldn’t need to go out!

Unless you have ever suffered from anxiety you will never really know how it can make someone feel. Anxiety can be caused by many things, stress, Your genetic ‘makeup’, trauma or a family crisis.

For me it started in 2008 when our world felt like it had been turned upside down, Alfie (our middle son) than 10 months was in the hospital with septicemia and pneumonia. It’s a day I remember like it was yesterday, I stood watching in horror as Alfie was rushed past me by the medical team as he deteriorated. He had wires and tubes every where it was touch and go for a while!

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As Alfie got older my anxiety did withdraw slightly or I’d go through periods where I convinced myself I was fine and was just overreacting. After I had Teddie and it became apparent he had addition needs my anxieties became worse than ever, I know it’s mainly due to him being more vulnerable than Harvey and Alfie. 

I cannot do anything with the children without running every scenario through my mind, Its sounds morbid and strange I know but if I run through what might happen if it does happen I’ll know what to do.

There’s really no shame in asking for help, It wasn’t till one of my friends reminded me &  gave me the push to make the appointment, thanks, Lydia!

I knew once I started telling the nurse how I have been feeling the flood gates would open! The nurse was so lovely and allowed me to get it all out, took a while as I had that ugly cry talking face (not a look)
I had to see the doctor as well, as I wasn’t feeling depressed she thought it best to see what the doctor thought the best care option would be.

I’ve been given a low dose of Sertraline, Although it may take months for the medication to really have an effect, I instantly feel better knowing I had taken the first step. My advice to others who are feeling or showing symptoms of anxiety (or depression) is not to sweep them under the carpet, I have spent years feeling the way I have when I didn’t need to feel like that.

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Anxiety UK

NHS help

Mind

 

He loved it…….

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The day I had been dreading has been and gone. Teddie loved his first day (morning) he, of course, had his moment at school but they are moments we were completely expecting!

Teddie needed to arrive at school at 8.45, We left the house at 8.40 (literally live around the corner) I didn’t want to hang around as Teddie isn’t always good with waiting. As soon as we got into the playground off came the coat and he wanted to play on the play ground but unfortunately, he didn’t have enough time.

Teddie had a bit of a melt down as he couldn’t play outside, I ended up leaving him crying which I really did not want to do.

I got a call from the school at 10.30 to say all was ok! Was very pleased to hear Teddie had handed over a PECS toilet card & went without any anxiety!

Teddie will be a learning curve for us all, even me, take today as an example- I was under the impression Teddie would want to go straight into class like he did at preschool but he had other ideas.

After chatting with his one to one & teacher this afternoon they mentioned the children will start their day with a phonics lesson & there will be no out door play first thing. Being informed with this I will get to the school earlier tomorrow so Teddie can play in the play ground before school.

All we can do is take one day as it comes!

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

 

Dear parents….

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I’ve stood in your shoes on more than one occasion, this may be your first experience with school or like me, you may have already been through the process.

Our Teddie (Bear) is due to start school on Tuesday, He is extremely clued on, Caring, loving & kind hearted boy but unfortunately, he cannot communicate with words as Teddie is non-verbal.
Teddie uses a complex form of communication known as PECS (picture exchange communications System) It requires Teddie to exchange a series of pictures which will correspond to what he wants or needs.

Some might say Teddie is hard work (I do sometimes) We have good days and bad days just like every family does. We have days when I question is Teddie any different than the next 4 – year -old then the minute I think it somethings happens and I’m literally pulling my hair out.

We all think the same when we see a child acting out or a parent who isn’t conforming but really we should be standing together as even if you hate to admit it you probably have been in the shoes of someone who is struggling with a strong minded child.

As your son or daughter embarks on their new journey at school I’m asking you a massive favour! On your walk or drive into school next week please would you support your child in educating them with basic knowledge of a special needs child. Tell them they kind, caring and friendly just like your child but they just need more time to adapt to their surroundings or situations.

Tell them, A special needs child can differ from each induvial.

  • They can struggle with their behaviour or ability to socialise, for example, they struggle to make friends
  • Reading and writing can be an issue but this could be because they have dyslexia
  • Their ability to understand things and their concentration levels may not be the same as your child
  • They may be a physical disability
  • Communication may play a vital role in their disability.

I have no concerns with Teddie trying to make friends at school, my main concern is the other children not making friends with him!
You and your child could make the difference of Teddie experiencing everything and more the infant school has to offer- the alternative is him having to leave the school as it’s made to hard for him.

We have everything in place for what Teddie will need for when he is at school but unfortunately, we cannot control who likes who. The thought of Teddie on his own at break and lunch time keeps me awake most nights.

Even without any additional needs is scary stuff starting school at any age, trying to fuse them friendship groups can cause stress to an adult let alone a 4- year- old.

Teddie will be eager as ever to get into class come Tuesday, he’ll be ready to make new friends and knows he has to be kind to everyone.

Please send your child to school no matter what age telling them to ‘Just be kind’!

 

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Devon….

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What can I say about our trip to Devon, Other than the horrendous drive we loved all the beauty it had to offer.

We arrived late Saturday afternoon the older boys were excited to see what the area had to offer. Teddie, on the other hand, seemed very disorientation when we came into our apartment, he really didn’t know what was going on. I could see how confused he was by just looking at him, his face showed it all, worry, fear, chaos and exhaustion. While we unpacked we gave Teddie the time to and space he needed to explore and settled into this new environment.

There were activists I was unsure Teddie would participate in as in the past he wouldn’t have entertained them. We had back up plans for back up plans but to our surprise, we didn’t need any of them!

Teddies confidence was astonishing he was jumping in & out the indoor and out door pool, went down water-slides without any hesitations, even walked the full length of a high top rope bridge.

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We are always proud of Teddie but this week we couldn’t be prouder- of course, we had our little battles but we found a way around them- most of the time.

We aren’t the family that eat out a lot, mainly because I can’t justify the prices for a family of 5 but we ate out every night and most lunches when we were away.  I think Teddie ate the same meal most nights, as much as I would love for him to have something different I would rather he eats what he likes then have him go hungry (would be unheard of with the amount he eats before dinner)

We had a large pink elephant park outside our apartment as soon as I saw it I knew the apartments opposite were going to be ours. Every morning Teddie would check the park was still there, we started telling him it was closed as if he’d had his way he’d be in there from 7 am to 7 pm!

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The holiday complex wasn’t what I expected but Loved spending time with Gareth and the boys which is all that counts.

I wanted the care free us to stay there forever as I knew once we were home and back to normality our days will be filled with the older boys in their rooms playing on Xbox or PlayStation, Teddie & I will be pottering around the house in between a load of washing and drying while Gareth’s back to work. 

It was so lovely filling our days with fun filled family quality time!

I completely underestimated Teddie on this holiday he braved some of his biggest obstacles I hope he continues with that strength and determination ready for his first day at ‘Big school’ in a weeks time.

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

The holiday…….

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The car is all packed and we are ready to go, We are off on our first ever U.K holiday travelling 305 miles to Devon. (Stress levels are high right now!)

The boys have been lucky enough to travel abroad most years but we hadn’t planned on a holiday abroad this summer so we thought we would give Devon a try. 

We have no idea how Teddie will be when we are there, we have lots of days out planned and lots of swimming (all Alfie is going for). We have a backup plan for every activity so if Teddie feels he can’t do it, it will be absolutely fine!! 

The last time we went on holiday was to Turkey, We were so excited to go it was going to be like all our other holidays, maybe even better. Unfortunately, it didn’t always feel like that at times.

It was on this holiday that I first noticed Teddie’s struggles, He hated the restaurant couldn’t get out of there quick enough. Gareth and I would have to take it in turns to eat our food then swap, Some night I wouldn’t even get to eat as Teddie didn’t want to stay with Gareth.

Every meal was an issue, it became very stressful mainly because I was really concerned what people thought, I knew how much we had paid for our holiday I didn’t want people to pay all that money and hear a child every meal time. I wouldn’t make eye contact with anyone for fear I would get a look which would end with me either feeling worse than I already did or worse I shouted and screamed at them. I ended up taking my frustrations out on my parent who was with us. It is something that I am still ashamed of even now.

Going on holiday with children isn’t the easiest even without any additional needs- the holiday we had hoped for just wasn’t panning out. We just needed a tiny break from it all, even half an hour so Gareth and I could share a coffee together or even push it to eat a meal at the same time. Now I completely get it, it was my parent’s holiday and the boys are ours, I shouldn’t have expected them to help when they are enjoying spending time together. ( They did help in the end after I lost it…… big time!)

As a rule, Teddie is always with me- I think most mums will agree with me when I say the dads get to do all the fun stuff (will make out it’s a chore) with the older kids while us mums stay with the little ones. I have told Gareth this is NOT happening on this holiday, I like fun stuff as well!!!

Will keep you all posted on how we got on!!

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