All things Christmas……

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Since I can remember Christmas has always been MASSIVE in our house, as a child, my dad would cover the ceiling with decorations while my mum perfected the tree.

I remember my parents getting farepak hampers, the excitement from my sisters and I as we unpacked some manky tinned ham, jars of pickles, chutney’s & all Christmas related foods (how times have changed) this excitement was all part of the lead up to the big day.

Now I have my own herd, We love Christmas just as much as I did when I was young, we put our tree and dec’s up super early as we just cannot wait until December- well I can’t.

Alfie is super excited about Christmas, he’s done his list, although not really asked for much (thank god). Harvey’s 14, we’ll leave that one there, then there’s our Bear.

Teddie doesn’t have a traditional Christmas gift wish list as he can’t and never asks for anything, of course, we wrote a letter to Santa on his behalf, but…….

…..what would he and other children diagnosed with special needs ask for Christmas?  The list might be much simpler than you think:

  • Toys, of course, every child would like toys even if they cannot ask for them.
  • A day without feeling lost when the slightest change to routine occurs.
  • The ability to use the toilet without fear and anxiety.
  • A day out without name calling or strange looks.
  • The ability to play with other children without being prompted.
  • A day being treated the same as the “normal” kid

All the above are completely achievable if we all put our mind to making equality happen for people with special needs.

It saddens me that Teddie doesn’t get Christmas like the others do whenever he sees anything Christmas related he says

“Christmas”

It could be anything from a Christmas tree to lights, a red bow or a polar bear,  it’s all Christmas to him but it appears he’s not sure of the purpose or concept. If he woke up and everything was packed away he wouldn’t feel disappointed.

The quote from A Christmas carol sums it up perfectly: 

You keep Christmas in your own way and let me keep it in mine. (in a good way though)

As long as Teddie is happy over the holidays, who are we to judge how he interprets it.

 

We went to our local winter wonderland with my Alfie, Teddie, my parents, sisters and their children, we had been looking forward to it for weeks, it never crossed my mind Teddie wouldn’t like it.

Teddie’s patients for waiting is around 5 minutes tops so when the shop worker told us where we were in the queue for the Santa train was at the 1 hour 20 minutes mark, we very quickly left the queue- didn’t wanna see Santa anyway.

As we walked around seeing all the lovely lights, dancing stuffed animals (not real ones) Teddie seemed to be in his own world. He was slightly distracted by a small trolley and a carousel ride but once the five-second ride finished and he was over the trolley I could tell he was hating every second of it! 

Alfie, Teddie and I ended up drifting away from the large group we were in so we could walk around at our own leisure without waiting for the family to decide on their purchases.

Teddie kept saying

bome time” (home time)

It was so busy there, kids were excited & running around everywhere it was manic for me let alone him! As much as I wanted to really enjoy the day I couldn’t as I could see how distressed Teddie was becoming. Gareth was working so it was all for me to keep the calm for Teddie but have the enjoyment for Alfie. It was becoming harder for me to manage the situation on my own so I decided we would pay for the crap we brought and sit in the car until everyone had finished looking around & enjoying their day.

Days like Saturday are days where I feel I have failed Teddie, I should have known he wouldn’t have liked it, in all honesty, it never crossed my mind, I got swept up with all the Christmas joy and hoped Teddie would love it as much as we did- tried to.

This week I’m aiming to is call every large department store, zoo & garden centre in our area to see if they are offering a quiet period where children with any disability can come and enjoy the festivities they have to offer without the queues and large crowds, If they don’t offer such thing I’ll suggest it for next year.

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

Guess what, I’m not a super mum!

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Thank God for good makeup, otherwise, I’d look how I feel!

This week I’ve come to the conclusion I cannot do it all, I’m not the super mum people have claimed me to be in the past so I’ll let you in on a little secret…….

I just don’t care. The boys possibly wear the same pair of socks twice in a row maybe longer, mainly because I hate socks, I hate looking for them, I hate pairing them up, I.HATE.SOCKS.

Homework. I used to do the Harvey & Alfies (mainly Alfie) homework for them, I’d sit and glue a million cocktail sticks to a cardboard box to make a miniature Big Ben even though the homework instructions said to draw it. Them days have well and truly gone, If Alfie’s homework isn’t done it’s his issue, not mine I’m over sitting up the table while he’s on his PS4 chatting with God knows who online.

Saturdays. We very rarely get dressed and hardly ever leave the house. Harvey & Alfie sit on their PS4/Xbox most of the day playing games that are possibly unsuitable for their age but its two fewer children hanging around my feet annoying me!!

Earphones. I brought Teddie some earphones because I cannot cope with the constant noise coming from his Kindle, I cannot describe the sound other then horrendous if I hear it for much longer I may start headbutting the wall to ease the pain!!!!!!

Washing up. I go to bed sometimes and leave the dinner plates by the sink or I throw the dishes into the sink to “soak” but really my thinking behind the “soak” is it will be easier for Gareth to wash them up in the morning!

Sofa. Once my bum hits the sofa at night it never ends well, within 10 minutes I’m out for the count, If Gareth brings the duvet down I’ll be asleep within seconds! I very rarely watch TV at night, Thank God for catch up!!

Pj’s. I am in my PJ’s before all the boys most night, sometimes I put my PJ’s back on after the morning school run if I’m working on the laptop all day. Alfie has slept in his school shorts a few times this week, I would like to say he has put clean ones on the next morning but I’m not overly confident he has! Teddie keeps his uniform on until he literally climbs into bed as if we put PJ’s on any earlier he’ll have a shit fit as he’ll think he’s going to bed that second. Harvey, he’s 14 enough said!

 

The reasons:

Half the reason for all the above is probably my anxiety medication, it certainly suppresses feelings of not caring about things that have bothered me before I took the tablets. Although the tablets have helped my obsession with not caring about the littlest things I still have the sense of danger in the pit of my stomach that at times can take over and stop me from doing things I want to do. I have now taken the steps and self referred to Health in mind, I have had a pre-assessment with the aim to receive some CBT (Cognitive behavioural therapy) which I laugh about as it’s the area I’m doing my degree in. 

For anyone who needs help, please don’t suffer in silence, tell someone how your feeling or write it down as it honestly feels like a weight, although only slightly has been lifted. Contact health in mind!

The A word………

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A question I am always asked is whether Teddie is aware he’s any different from his peers, my answer has always been the same,

“No”

Teddies confidence has always been refreshing, without it I think he would be a completely different boy.

Teddie is unfamiliar with unkind words and name calling, I doubt he has any concept of them if a child said something to him as he’s never been around that environment. Unless there was physical contact, ie pushing Teddie would continue to play around them. There will, of course, be a time when Teddie is exposed to this bully like behaviour, I only hope this never hinders his confidence.

Teddie will happily approach new children and always tries to join in on their game, especially if its chase.
The difference between Teddie and the other children is Teddie has no concept whether the children want him to play with them, most of the time Teddie isn’t playing with the new children, he’s actually playing alongside them. If the children ran off without him he would happily run with them thinking he is joining in.

This week Gareth and I caught up on the TV series The A word. The story follows members of the Hughes family, who seem to lead a normal existence until they receive some unexpected news. Communication problems with 5-year-old son Joe Hughes lead to a diagnosis of autism.

While watching The A word I noticed a lot of similarities to our journey, we went through the motions of saying

“he’ll get there”

Although there are many similarities we have never hidden behind Teddie having special needs, in that respect, we are complete opposites.

last weeks programme, Alison Joe’s mum forgot to charge his iPod which he listens to all the time, Joe’s iPod runs out of battery in the car on the way to his new specialist school. This completely changes the dynamics of Joe’s morning resulting in a difficult transition into his new school for Joe and his mum. I sympathized with her as the slightest change to routine can make or break Teddie,

I love the series but what annoyed me was how quick Joe got a placement into a specialist school, most families I know have had to go through legal proceedings to get a placement.
I know it’s only a programme but I would have liked the series to have shown the struggles us families have to go through in order to get what our children are entitled too.

I have made more PECs cards this weekend, Teddie is still showing signs of being unsettled, even at home. I have placed social stories on our routines and the school transition around the house so he knows whats happening. I have also printed a plan & completed board for Teddies 1:1 to try, if the day can be planned ahead Teddie will feel less anxious if he can see whats going to happen (hopefully)

Life with a Bear has its up’s and down’s but as always we wouldn’t have him any other way!

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EHCP……

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After some consideration, we’ve decided to go for an EHCP ( Education, Health and Care Plan) with the plan that Teddie will attend a specialist school at some point, ideally next year.

An EHCP can be applied for by the school or their parents but the 2014 SEND Code of Practice states that schools should start the EHCP process with the knowledge and agreement of the parents, this is what we are doing.

Applying for an EHCP is a lengthy process there are many steps that need to be followed: 

  • Step 1. Making the request
  • Step 2. The local authority’s initial decision
  • Step 3. Assessment
  • Step 4. Drafting the EHCP
  • Step 5. Agreeing on the EHCP
  • Step 6. Finalising the EHCP

Once everything has been agreed, the local authority will send out the final plan. This should happen as soon as possible; technically you should receive it a maximum of 20 weeks after the first request for assessment.

As much as we LOVE the school Teddie goes to we have to look Teddies best interest for the future. As the process takes forever, in my opinion, its best to apply for it all now as things change so quickly. 

Every day Teddie seems to get more distressed as the daily routine changes, this week its been the rehearsals for the Christmas play, Teddie has managed to be apart of most of the rehearsals but needs to leave before the end as its too much for him.

Today it’s come to school in PJ’S for children in need, we have implemented it for about a week with PECs cards and social stories. We have brought new Pj’s so Teddie cannot make the association with bedtime & have been telling Bear it is rocket day at school as his new PJ’s has a rocket on. This change will either go 2 ways!!

Teddie has been very distressed with the end of day routine at school these last few weeks, its been agreed Teddie will go into the rainbow room for sensory play until the end of day bell rings. By doing this Teddie can then gets his coat and can leave straight away which is less stressful for him, me & his 1:1.

We have been doing lots of phonics, shapes & number work at home, we use the bingo format as this works best for Teddie. Teddie has been able to place the alphabet in order since he was 2, he still enjoys doing it now! Making these adaptions is the best way for Teddie to learn, we are lucky that Teddie has a very good memory, you only have to show him once and he’ll just get it.

We are having a referral to see an occupational therapist to help develop Teddies skills for handwriting & his fine motor skills. The process for OT has changed, they are no longer seeing individual children but put on group therapy sessions, we are filling the paperwork out today for it, hopefully, there won’t be a long wait.

 

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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