What if……..

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The first week back to school has been a rocky road, to say the least. I’ve struggled to get Teddie out the front door in the morning’s- when I do he wants to enter the school through the office rather than the playground/classroom door ( other than today)

As Teddie seemed to settle one day the next something props up which sets him back. Just when we thought he had overcome the worse of Teddies anxieties towards his school uniform (mainly his jumper) he gets his sleeve wet which sends him into a meltdown.

Yesterday was Teddie’s school disco, the children were very excited at the idea of a boogie straight from school; I heard the laughter from the children who were changing into their party gear. For Teddie this wasn’t the case, instead of laughter, all I could hear was crying & fear.

As I entered the school, I found Teddie hunched in the middle of the corridor not knowing what was happening. Teddie first thought the children were changing into their P.E kit but soon realised they weren’t- didn’t help matters. 

Teddie was so overwhelmed by the change of routine I sat hugging him in the middle of the corridor till he settled, once he did we headed home.

There’s bound to be certain events when we feel sad Teddie isn’t joining in or experiencing like his peers are. 
The school disco, non-uniform, dress up day, and even school trips are all events the children get excited about

but what if you aren’t………?

  • What if you don’t care there’s a school disco
  • What if the fear of breaking your routine overrides dressing up like everyone else?
  • What if you don’t fully understand what is happening?

I’ve been so worried Teddie is missing out of all these events I failed to see if Teddie even wants to do any of it. We know when Teddie is gonna be okay and when he’s not he, so why are putting him through all of this unneeded stress?

 

Next week is world book day, the children are allowed to come as a character from their favourite book-or the easiest costume a parent can buy or make. 

World book day has always been a MASSIVE event in our house, I love nothing more than staying up late making the boys their costumes but this year will be different.

I would like to think Teddie will partake in the dressing up as he loves a dress up but as it’s a school day I’m not so sure he will.

Alfie has chosen to go as Where’s Wally- something he went as a few years previous. This year I have brought off the rack as I’m hoping Teddie will go as Where’s Wally as Alf is so the outfits NEED to the same!!

If Teddie decides on the day he cannot dress up, it’s completely fine he can go to school it whatever he feels comfortable in- Will be his uniform.

All we ever want is for Teddie to feel safe and happy where ever he is if that means him not conforming then so be it.

Considering the addition needs, Teddie has to contend with he always has a beautiful smile on his face, he’s ALWAYS polite & is the “kindest giant in town” (Still obsessed with the book) what more can we ask for.

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

 

School diners & emotions…..

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A few weeks ago Teddie tried school dinners for the first time, the pictures above make my heart melt.

Something so insignificant to others is a massive achievement for Teddie, us & the school. Teddies teacher very kindly videoed his first attempt at lining up with his tray. The reaction from the other children, teachers, kitchen staff and midday assistances was honestly like they had all won the lottery. They were all so pleased Teddie managed it all, & he even ate it!

Teddie is still insisting on taking his lunch box to school on the days he has school dinners as its part of his morning & lunchtime routine. 

This week we have had snow again, as much as Teddie enjoys the snow he doesn’t like it around his school shoes. He became very distressed when walking to school he’s trying to avoid the snow as much as possible- which is impossible at times.

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Teddie’s obsession with Doc McStuffin has returned with a bang, we are subjected to Doc Christmas, Doc nightingale & Doc gulping gator on constant repeat!

Along-side Doc McStuffins Teddie is OBSESSED with Julia Donalson’s book

“The smartest giant in town”

We all know it word-for-word even the teachers as he loves to read it at school. Teddie copies the giant throughout the story especially when he loses his trousers!

The last few months we have also been reading Anna Llenas’s book;

“The colour monster”

Throughout the book, it has different colours represent a feeling, which encourages children to open up and discuss how they feel. I have been reading it aloud even when Teddie isn’t paying attention and it’s obviously been going in.

While watching Doc McStuffins Gulpy Gulpy Gators, Doc fixes Gustave, the green gator as he’s broken. Teddie came up to me and said;

“Gator sad”

This is the first time I have witnessed Teddie associating a feeling & emotion with what he’s seeing, he was completely right Gustave was sad!  Teddies school have also said he has been using happy & sad to learn things he likes and dislikes! I would highly recommend this book!!

When Teddie has a better understanding of his emotions it will help with no end. His communication is increasing daily, hopefully, we can understand his worries and fears better once he hs the ability to share his emotions with us!

We love our bear and would never have him any other way.

 

 

 

 

Fight for what you believe in……..

Since I can remember I’ve always been outspoken and always stood up for something or someone I believe in. If I think something isn’t right God help you as I’ll do my utmost to make the situation right!

Since having the boys I’ve had a fire in my belly when they are palmed off or someone tries passing the buck.
I hold grudges like you wouldn’t believe and if something isn’t resolved I’ll make it my life’s worth to make sure it is!

A few weeks ago I referred Teddie to the emotional wellbeing and mental health service for his extreme anxiety issue! Yesterday I got this response. (See letter)

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Are you f*****g taking the piss was my response to the poor lady on the other end of the phone! Seek out support and advice from Teddie’s health visitor!! I’m not getting Teddie weighed or need help with minor things, he’s ASD and has extreme anxieties that affect his daily life.
Do you honestly not think we have exhausted all other avenues before seeking out your help.

Don’t insult mine or other professional intelligence by telling me to seek help from an unqualified (in this area) health visitor!

Had they worded it, seek out help from a specialist health visitor I wouldn’t have lost it as much as I did but still, we have just seen 2 specialist health visitors who both suggested this referral!

After losing my shit with the very helpful lady Teddie has now been taking on as a patient -unless I hear otherwise but she’s very confidant Teddie will definitely be seen.

It shouldn’t take a parent having a fit over the phone to get our children appointment’s they really need! Children are being turned away before they are even assessed, this is wrong and needs to stop!
Not every parent is like me, they receive their letter and just leave it at that.

I will always fight for what I believe in especially when it comes to my children & I’ll be Teddie’s voice until he can be heard!

Don’t mess with a Mumma Bear!

Assessment & development……….

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Haven’t blogged for a while as didn’t want to jinx anything.

A few months back Teddie was given a verbal diagnosis of autism by his lovely paediatrician- but like most things, we had hurdles in our way.

As many of you are aware Teddie has waited over a year to be seen by the child assessment unit due to Virgin Care taking over in our area.

Teddie’s paediatrician felt it was best for him to be referred back to her for a clinical diagnosis. We were told Gareth and I would need to attend a multidisciplinary hearing in a few months time.

Of course, this isn’t what happened…..

To cut a long story short Teddie’s paediatrician could no longer offer a clinical diagnosis due to changes in her department that were out of her hands (wanted to bang my head against the nearest brick wall!) we would have to wait for a child assessment appointment.

But, I can now say,

After a home visit just after Christmas, assessments in the unit & a multidisciplinary hearing yesterday we finally have the autism diagnosis in black and white.

It’s been a very long process, a process that should not take that long.

I have the up-most respect for the lovely ladies at CADU, they are trying their best for the children and their families but their hands are tied. 

26982471_10159878054880607_1913298177_oAlthough we had waited what has felt like a lifetime for this appointment, I sat in the waiting room just staring at this door. 

The other side of this door represents so much to children & their families, how can Virgin care think this service is not needed?

For us, all the waiting is finally over. we knew & had accepted Teddie was autistic a long time ago. I made it clear to the doctor we would continue to support Teddie regardless of what the outcome was after his assessments. This is not the same for all families, they struggle to come to terms with their child’s diagnosis.

Teddie didn’t need a diagnosis of ASD he already had one for complex needs but for him and his future he needed it, he deserved it.

We want Teddie to embrace who he is he’s not ‘different’ he’s autistic and we could not be prouder of him.

The child assessment unit is under review again in April, I cannot stress enough the importance of these units, for the children and their parents. The ladies are doing a fantastic job but are bearing the weight of those who feel the unit isn’t needed.

The staff at CADU are the ones receiving the frustrated phones calls from parents (normally from myself) when appointments are changed or cancelled. The situation really is out of their hands.

From a parent who has waited 15 months for an appointment that should have been within 4 months, my advice to Virgin care would be not to cancel any assessment units or services until you have a replacement service in its place. You are failing the children, their parents, their schools and their community!

For us, we want Teddie to have access to the appropriate support & resources for him to further his education in whatever setting (ideally a specialist school).

We have a referral in place for Emotional and wellbeing mental health service in the hope they can help Teddie with his severe anxieties. We also have a private referral for an SPD (Sensory Processing Disorder) diagnosis.

Although this chapter has finally closed Teddie has a long road ahead of him and more hurdles to jump.

I thank Teddie’s school every day for their help and support, we truly have the most amazing support system who are all on team Teddie! 

We are extremely proud of Teddie, he brought tears to my eyes during his assessment, he really is such a kind warm hearted bear!

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

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Reflection

How has 2017 come to an end already, where has this year gone?

The support we have had from family, friends and strangers who now we class as friends have been overwhelming.

I started writing Life with a Bear mainly because I felt like I was going insane with the behaviours I was experiencing from Teddie, I needed to vent my frustrations through writing. I never expected to get such a good response just from being honest with how I was feeling with Teddie’s journey. 

This year has brought ups & downs from having appointments cancelled left, right and centre, Overcoming one hurdle only to be faced with another, leaving preschool and starting school.

The kindness and support Teddie has received from the staff at preschool and now at school are truly amazing. Teaching is a job but caring the amount these lovely ladies do about Teddie’s well-being goes above and beyond their job role.

In the beginning of our, journey I don’t actually think autism was something I even considered, I just thought what Teddie was experiencing was a speech delay.

It wasn’t until I started researching speech delays in children I stumbled across an article on non-verbal autism, as I read through the article it was like someone was reading about Teddie, I knew in that moment Teddie was autistic. 

I’m often asked how I feel about Teddie’s disabilities, I understand why people would ask that question, I would probably ask the same thing. For me, it’s never been an issue, would I prefer Teddie not to have autism? I’m really not sure. 

Don’t get me wrong at times (most of the time lately) I HATE autism;

  • I hate the waves of distress it brings Teddie.
  • I hate the anxieties that haunt’s Teddie daily.
  • I hate the fear & sadness it brings him.
  • I hate that Teddie cannot express love or emotion like we do.
  • Most of all, I hate there’s no cure!.

As much as I have hate for autism, autism has made Teddie who he is. The love we have for our Bear takes over and will always outweigh the hate.

From the minute Teddie was born I knew in my heart he was gonna be our special Bear. I couldn’t take my eye’s off him and haven’t really since.

Teddies personality is infectious, he is so confident (considering) he lights up a room when he enters it we honestly couldn’t be prouder of him.

Parents often count down the years till their children grow up and are off their hands, I know we certainly have with Harvey (I’ve got my eye on his room). As much as I wanna push Teddie into the wide world we have to realise that maybe something that doesn’t or cannot happen.

For now, my everything is solely learning, researching and help educate people on what life can be like for families affected by autism.

We wish everyone who follows us a very Happy New year!

All about the emotions……..

feeling

 

For months we have been trying to find a way to help with Teddie’s anxieties. While we have been looking for ways to help we have overlooked the emotions that come with these issues. Unlocking his emotions may well be the key to supporting him with his current anxieties.

There are a trillion different techniques for learning and discovering feelings online & in books but implementing them is no way as easy as its mentioned.

Emotions are traditionally fractionated into six ‘basic’ emotions;

  • Happy
  • Sad
  • Angry
  • Afraid
  • Disgusted
  • Surprised

Helping Teddie express his emotions when needing to use unfamiliar toilets we may have a better understanding of how he’s feeling.

We do not understand why using certain toilets affect him the way they do, he has the fear on his face whenever I even whisper the word toilet. We want Teddie to be in control of his feelings & have the ability to tell us when he’s scared, sad or happy!

We are aiming to focus on the main 4 emotions first, Happy, sad, angry & afraid I have also added “poorly”. Teddie knows when someone else is unwell but are very reluctant to brand himself whenever he is poorly.

Visual has always been everything for Teddie, we have made PECS cards for all six emotions, the school are focusing purely on the main 4 while we will cover the 6 at home. I have made cartoon PEC’s cards & family PEC’s cards showing the different emotions.

If we make learning the emotion fun enough Teddie will know them by the end of the week, Teddie learns things at a ridiculous rate.

I will start with a word bingo game followed by saying an emotion and get Teddie to pick the corresponding card. These learning techniques have proven well in the past. Teddie loves to play word & number bingo, I’m confident he’ll love this game just as much. 

Once Teddie understands his emotions we will create the Emotions Wall, Teddie can use it when he is experiencing an emotion that he is struggling to express.

Last week we met with Teddie’s teacher, senco, specialist teacher and his EP (educational psychologist) to complete another one plan.

The specialist teacher will be in discussion with the class teacher and see him every term, the EP will use puppets to help communicate Teddie worries and fears. With these professionals helping we may have enough to apply for an EHCP next term, fingers crossed.

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

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!

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.