Piper Is 4, a New Diagnosis and School

It’s has been a long, long time since the last update. With COVID and all the shielding and restrictions, 90% of Pipers appointments (apart from the really important ones) were cancelled and I wanted to wait til I could update on more than just her day to day goings-on. 

Then in the last month we have had an abundance of them again and have a few health updates to share.

But firstly going back to lockdown times.

Piper, as I’m sure you already know was classed as extremely clinically vulnerable, so we spent the majority of the last 18 months holed up at home. 

Did we mind it? Not really! 

There was the obvious things like missing friends and family that affected us all the most but I’d like to think we’ve learnt to be really adaptable – we often have to think things through on how they’ll affect Piper/ whether they’ll disrupt her already poor sleep and we have to miss out on some things – like staying out overnight, which definitely helped with accepting we have to be stuck in.

I guess there’s no point mulling over something we can’t change so we just got on with it and actually really enjoyed our time together. 

We was scared though, SO scared of COVID and how it would affect us all, but obviously Piper having extra health problems really petrified us.

In the beginning, even though we wasn’t even going out, I was disinfecting the WHOLE house every day, didn’t answer the door to people, didn’t go shopping, Stevie worked from home. Basically every rule we followed. 

Thankyou to our wonderful neighbours, friends and family who went out of their way to bring us food! 

9 months later and we all had COVID. 

We were all super lucky to have it so mildly, and Piper…. you wouldn’t of even known. It’s only because we had positive tests we checked her too! 

She dealt with it like a champ. 

During lockdown Stevie and I enrolled on a Braille course with the charity LOOK UK, we’re now pretty confident grade 1 braillists and would urge anyone else to reach out to them for future courses. 

It was all done over zoom, they sourced and supplied the Braille machine and paper and taught us remotely. 

It was just great to speak to so many other parents of VI children and to be mentored by visually impaired adults themselves!  

Our little pea is also a confident braillist now too and has her very own Braille pal!! Who is Pips bestie Elsie’s cousin – Kacielea 😊

You girls make us so proud!

I’ve just had to look back at my last blog to pick up where we left off and saw the last school update I said we was thinking about holding Piper back a year. Well, since then instead of thinking about it, we actually applied for it. 

It was quite a long process, we had to get supporting letters from the professionals who know her best and we did have to fight her corner a little, but all is good – last week we got the confirmation that she will start next year instead of this September which was a relief. 

This year she will start nursery instead 🙂 

Because of Pipers disabilities she has to have something called an educational health care plan (EHCP).

This includes input from a lot of the people who work with Piper and they suggest everything they feel she needs and how often she needs it to thrive in school (speech and language, OT, Habilitation a 1:1 etc.)

We had the transition meeting last week and all involved are totally on board with her having a phased start into nursery this year and seeing how she goes.

It all takes quite a long time and quite a few meetings to get the final EHCP but I’ll come back to that in a minute. 

Pipers bloods were last checked around 6 months ago, so she is probably due those again soon. 

They was all fine – her thyroid levels are where they should be – so no change in her thyroxine, she’s upped her growth hormone again and her cortisol levels (the scary ones, remember?) they’re all ok still. 🙌🏻

I think that’s basically all the medical updates we had during lockdown, but I wanted to also add in something really cute, during this time a few companies reached out to us in regards to Piper and sent her the most beautiful gifts!! I’m going to share links to each of them as they deserve some love. 

The first was from an amazing embroidery company – The embroidery stall. https://instagram.com/theembroideryandvinylstall?utm_medium=copy_link

They offer Braille and sign language images on ALL of their garments, and after contacting them to place an order they informed me someone had gifted a set to someone ordering with Braille! How amazing is that!!!? 

The clothing is just beautiful too! 

Then the most BEAUTIFUL gift arrived for Piper from the wonderful Jacob Hugo. https://instagram.com/jacobhugouk?utm_medium=copy_link

Each and every item inside this awesome sensory box gives Piper the opportunity to explore different textures, sounds, shapes colours and materials (and obviously everything has to be double checked by her mouth too 🙄🤣) 

All of the items are such high end, good quality toys. Just so beautiful!  Thank you so so much Jacob Hugo, we are so grateful for your generosity.  

And then a lovely lovely lady who owns Ickle Humans – https://instagram.com/icklehumans?utm_medium=copy_link contacted me to say she had been following Pipers Instagram and she wanted to send her some bows! 

She also sent the sweetest note with Pipers gift which really made us smile! 

From the bottom of our hearts thank you all so much for your generosity!! 

Now onto Pipers sleep 🙄 I can’t describe just how bad it is. She is now able to sleep for 5-7 hours which is great, but she’s just all over the place. I rarely get to sleep at night, and in the day  – obviously we have 3 other children, school runs, homework and housework to do which leaves very little time for sleep.

I know it’s at the point where it’s damaging my mental and physical health, but what can I do? 

Piper can now climb out of her cot at lightning speed so there’s absolutely no sleeping for me when she’s awake now, she’s fallen a couple of times – luckily uninjured, she even managed to get out whilst I was sound asleep and repeatedly booted our heavy mirrored door til it smashed and fell off it’s hinges. SO dangerous, it’s so heavy I have no doubt if it fell the other way it would’ve caused serious injury or worse. 

A standard night for Pip

I spoke with her sleep professor this month and his plan of action (if ok’d by her endocrinologist and paediatrician) is to put her on beta blockers in the day to stop melatonin production and a 6 hour lasting melatonin at night. 

Right now we are saying absolutely NO to the beta blockers! They can affect her thyroid and growth hormone medication, they can lower blood pressure and cause all sorts of side effects so that for us isn’t even an option right now. She has a perfect heart so why would we want to give her something that changes it.

She’s been highly unsuccessful with melatonin in the past but we said we would try this one as a last ditch attempt to regulate her sleep. The next step and only remaining thing we could try after this would be a sedative – also a big fat NO from us! So this is basically it. If the melatonin doesn’t work this will be her sleep unless she decides to change it. 

I’ll let you know how we get on with it anyway, but I’m not holding my breath. 

A couple of weeks ago we went to Moorfields – we really do like it here. 

Piper was seen by 3 or 4 different people all checking Pipers vision, and they’re happy with how she’s using the little vision she has. Her prescription has actually got stronger which we was surprised about as she gets around so well but she won’t wear her glasses anyway. 

New specs

We also had a little chat with Bernadette – the family support worker, she had put another local mum in touch with me a couple of months prior, whose daughter was recently diagnosed with ONH so we just had a small chat about that and how Pipers doing. 

We then spoke to Naz – Pipers ophthalmologist, about genetics again and she said she would like to have the other members of Stevies family who have ONH to come in, to see her/the genetics team to see if there is any link between the three of them. So far no genetic link has been found. 

Now onto a bit more about Pip and something we’ve been suspecting. 

For a long time we have noticed Pipers ‘blindisms’ may be more than just blindisms – for example her excessive spinning, hand flapping, the fact she doesn’t speak, how she plays, her preference to play by herself, how she gets frustrated – throwing her head back, her sleep etc. Just lots and lots of things have pointed us towards thinking Piper is probably autistic. 

The only place she wanted to sit (lay)

We’ve mentioned this a lot of times in the past but I guess it’s always been so similar to blindisms it’s been put down to that, however, when we went to Moorfields, Piper had a head banging sesh because she didn’t want to give back the wizard on a stick toy the optician was using to see if Piper could track.

He did all his checks then asked if we would mind him putting a “helping hands” sticker on her file. 

This recognises children with additional needs and supports them in making sure they’re not waiting too long for their appointments and offers them a quiet room to wait in if there’s too much of a sensory overload. 

This was the first time someone had hinted towards what we was already thinking. 

We happily said yes. 

Whatever support anyone thinks Piper needs, we will take. 

A week later Pip and I went to see the neurodisability team at GOSH. It was the first time Stevie couldn’t come (because of COVID restrictions). 😢

The appointment mainly centered around watching how Piper plays whilst me and the child psychologist had a chat. 

15 minutes in and I was asked if we’ve ever spoke to anyone about Pipers behaviour. 

I have, just 3 weeks before I had spoke to her paediatrician raising my suspicions of autism, but we was all kind of waiting on this appointment. 

Naomi and I spoke at length about it and within the hour Piper had shown so many autistic traits and she was given a formal diagnosis on the spot. 

Usually there is a whole lengthly process around diagnosing a child with autism but Naomi (the child psychologist) said what she had seen on the day was enough and she doesn’t want to delay the diagnosis any longer as Piper needs additional support.

Great, what we had suspected/known for the longest time was confirmed, I felt relief. I left there feeling completely fine, picked up a birthday present for Piper from the GOSH gift shop, told Stevie – who also took it in his stride, then on the drive home, oh no! Sadness, feeling like I can’t get a full breath and an overwhelming sense of exhaustion – my “go to” panic symptoms. 

Whyyyyy?! Why does my head and my body work against eachother. I have KNOWN this for some time so why is my body now feeling fatigued, drained, sad and helpless, then I realised….. it’s because ,my little Pip, it’s because I worried about your future again. 

I got home, putting aside how I felt and acted normal and Stevie just said “I feel a bit weird”. 

It took us both back in time – to when we got her other diagnosis’s, which were really life changing. I guess our bodies just went into auto pilot. 

Stevie has the awesome power of springing back from things really well, and he reminded me – I’m not allowed to think about her future, I have to focus on the right now and celebrate where she is now and how far she’s come. 

So lucky to have you ❤️

Early last year I started taking medication to help control my anxiety, it had gotten to the point (pre COVID) where I was afraid to go out by myself, or if I managed to id have to cut it short and come home early because of a panic attack coming on, and my days were filled with me fighting for a full breath, the only time getting a break from it being when I slept – one of the many symptoms of anxiety but my absolute worst.

Considering how bad I was, I’d say I was anxious and had the air hunger/dizziness/exhaustion etc for 3-4 days after being told she is autistic and now it’s totally gone. 

That’s a MASSIVE improvement. 

A week after the neurodisability appointment and we received her full report. For most things she’s functioning at the age a 12-18 month old visually impaired child would be, on some things she scored a little higher but nothing over the age of where a 2 year old would be. 

She also scored 13 on the autism scale, with scores under 35 being likely of an autistic spectrum disorder. 

I don’t know what this score means tbh, I can’t find the scale they used to compare but using common sense and seeing her number is pretty low I’d think she’s probably moderately autistic.  

So anyway, this brings me back to Pipers EHCP. It got finalised on the morning of Pipers neurodisability appointment, but now we’re going to have to request it’s all looked at again as Naomi has said it’s imperative her new diagnosis is included.

It’s also made us rethink about what school would be best for her. As it stands she will be going to a mainstream school which has a visual impairment base, but we need to – for Pipers sake, look into a SEN school near us.

Hannah – Pipers lovely Portage worker already told us weeks ago she thinks it would be great if we had a look around treetops school. Treetops is a special school for children who experience moderate learning disabilities. 

We went for the visit a week or so later and the school really is lovely, there’s two sides to it, one side for children with milder learning disabilities and the other for more moderate learning disabilities.

There’s also another school close by for severe learning disabilities but right now Piper seems to be between mainstream and Treetops. 

It surprised me how similar to a mainstream school Treetops was, I guessed it would be totally different – but it wasn’t! Children were doing circle time, PE, we saw girls with saws and wood making something, the artwork in there some of the children done was UNBELIEVABLE! 

One boy, who must’ve been around 10 came right over to us and shook my hand, told me he loved the school and what his favourite thing about the school was. 

It was just full of really happy faces.

So, come next year if we, and everyone else thinks Piper will be better suited in a special school we at least feel totally comfortable with that too. 

At the end of June Piper turned 4! FOUR!!!!! 

Pip at her first party

We can’t quite work out where the last four years have gone! 

There is one little bittersweet part to this though. 

Due to her starting nursery in September means we are having our last home visits with some of the professionals we’ve grew really close to! 

Hannah – Pipers portage worker. The most positive, kind, gentle and hard working! We have loved getting to know you over the past few years and we are truly gutted we have our last session next week.

 

Thank you so much for all of your support with holding Piper back a year, enrolling Piper in hydrotherapy classes, opening Piper up to new toys and activities and for being so patient and just lovely!

Lisa – Pipers habilitation teacher. You’ve been with Piper right from the start of her habilitation journey, often working with our fave Helen (Pipers old visual impairment teacher) – the dream team!!! You are going to be so sorely missed!!!

Thank you for always bringing a smile, knowing when Pipers had enough and for continually checking in on us during lockdown to make sure we we’re all ok. None of it went unnoticed. 

We know you will continue to work with Piper in nursery and school, but from stevie and I – thank you

We hope to bump into you both in the future! 

I just want to finish this by saying a huge thank you to Debs & Del Boy, Macky and my bez Annie. 

Debs and DelBoy organised zoom quizzes with the family and raised a massive £1000 for Pips!

And Macky and Annie sold treatment vouchers at their salon, donating 10% of all sales to Pip raising £500! 

Thank you so much to you all! We’re so lucky to have you, your generosity and your thoughtfulness towards Piper ❤️

One more thing….. A little message from Stevie…….

Come on england!!! 🏴󠁧󠁢󠁥󠁮󠁧󠁿