Restricted Therapy

Covid 19 has affected us in many ways, the biggest being that the 3-4 times weekly therapy sessions that we relied to keep Annabelle building muscle strength and to allow her muscles to be stretched and active just vanished overnight.

Pre Covid Annabelle has two conductive education sessions and a physiotherapy session each week (some weeks NHS and some weeks private) and an aquatic therapy session fortnightly.

We also did daily therapy at home.

When the country shut down, we assumed it would just be for a couple of weeks.

We thought a break would do her good and we would continue working with her at home.

We soon realised it wasn’t going to be that easy.

We both had full time jobs to maintain, I was working from home and my husband Simon was still having to go to work every day so we had to stagger our hours so one of us could work whilst the other looked after and entertained two children who were no longer able to attend nursery and on top of this we had to fit in therapy each day.

We had no one around to support us. We had no option other than to find a way to make it work as best as we could.

For a while we worried that we weren’t fitting in enough therapy, but, the world was against us so we had to accept we couldn’t work miracles and wouldn’t be able to do as much as we wanted because there simply wasn’t enough hours in the day.

We changed our approach and just did what we were able which was generally standing frame activities and hidden therapy through play which we were able to sneak in several times each day.

We are now coming out the other side.

After 6 months of no hands on contact from our professional team, we are now able to access hands on conductive education session,  aquatic therapy and NHS physio again and have continue doing a second conductive education session via Zoom.

Whilst Annabelle has had a lot of gains over the 6 months she has also deteriorated in other areas.

As a therapy parent it is very easy to focus on the therapy your child enjoys rather than those parts which are harder and less enjoyable.

Getting a balance somewhere between is not easy.

Having hands on therapy sessions helps with this as there is additional equipment available which means more variety and different therapy exercises from those we do at home which helps give Annabelle a full stretch and works on all those muscles that she has less desire to work on home.

Being in the pool is so important for Annabelle, 6 months without this, led to her body becoming tighter by the day and harder to stretch.

We are hoping that therapy isn’t restricted again any time soon, but as there is no guarantee we are making the most of every session available to us and trying to reduce the tightness throughout Annabelle’s body that creep in during lockdown!

 

A Successful Pick

One of the challenges of having a physically disabled child is accessibility.

Anything we plan to do we have to do additional research and planning to ensure it is going to be accessible for Annabelle.

Annabelle is old enough to understand she has cerebral palsy and as a result she has to work very hard to move and has to do regularly therapy but she isn’t old enough to understand that she has a disability and what that actually means is that sometimes she will not be able to participate in things due them not be accessible.

She has cerebral palsy but that does not define her. She is a little girl who deserves to have as many opportunities as possible and we will always go over and beyond to let her experience everything she desires.

This month it was pumpkin picking.

A muddy field full of pumpkins is probably high up on the list of fun things to do with children over the Halloween period, but it certainly isn’t accessible.

Annabelle is still pretty small for her age which means we are still able to carry her around if needed but it’s not ideal and after a while of carrying what feels like dead weight, it becomes too much to handle. You also have that risk that you may trip and fall with your child in your arms which again is far from ideal on a field full of pumpkin shaped obstacles.

With pumpkin patches come wheelbarrows, for us this was the perfect solution to getting Annabelle across the field safely and to save our arms. She thought it was fantastic and enjoyed every minute of the ride. We wheeled her across the field looking at the hundreds of pumpkins in all shapes and sizes along the way.

Once we found a perfect picking spot, we put Annabelle into her Upsee so that she could enjoy the picking experience whilst we had our hands and arms free to assist her with lifting pumpkins. We were able to bend down with her so she could pick the pumpkins she wanted and then helped her lift them into the wheelbarrow.

She was in her element. We picked as many different pumpkin varieties as we could get our hands on and she loved every minute of the experience.

There is no better feeling that watching your child participate in something that you were concern was not going to be accessible enough. It is safe to say that we will be going back next year and this may even be the start of a Halloween family tradition!

 

World Cerebral Palsy Day 2020

On 6th October it was World Cerebral Palsy Day.

3 years ago it wasn’t a day we had heard of let alone celebrated.

“There are 17 million people across the world living with cerebral palsy. Another 350 million people are closely connected to a child or adult with cerebral palsy. It is the most common physical disability in childhood. Cerebral palsy is a permanent disability that affects movement.” (WorldCPDay.org)

Our family falls into that 350 million people statistic and Annabelle is one of those 17 million people statistic.

“World Cerebral Palsy Day is a movement of people with cerebral palsy and their families, and the organisations that support them, in more than 75 countries. Our vision is to ensure that children and adults with cerebral palsy have the same rights, access and opportunities as anyone else in our society. It is only together, that we can make that happen.” (WorldCPDay.org)

We strongly believe that children and adults with cerebral palsy SHOULD have the same rights, access and opportunities as anyone else. We are a long way from achieving that but we the only way to make that happen is to fight for it and that is what World Cerebral Palsy Day is all about.

Every year there is a different theme. World Cerebral Palsy Day 2020 was a day to Make Your Mark!

There is no doubt about the fact Annabelle has already made her mark on so many people and we couldn’t be prouder of what she has achieved and the beautiful little human she has become.

Cerebral palsy doesn’t define her, she is her own amazing person, but it is something she will have to live with every day of her life and there is no getting away from that, so, we will always take a minute or two, on 6 th October every year to reflect on what she has achieved despite the challenges cerebral palsy throws her way and will let her know how proud of her we are.

This year Annabelle had conductive education on 6th October and showed cerebral palsy that she is and will forever be a fighter!

Conductive education and therapy are a big part of Annabelle’s life and it is just ‘normal’ to her.

As the years go by and she gets older and her understanding of cerebral palsy and what it means will grow. 6 th October will mean more and more to her each year that goes by. She is more than a statistic, but we will ensure she is proud to be part of the statistics and that she does something to raise awareness of cerebral palsy on this day each year!

I Want to Walk

Everyday Annabelle wants to walk. Sometimes she wants to walk in her walker and sometimes she just wants us to hold her waist and support her whilst she takes steps.

The constant bending hurts our backs and even takes a toll on our arms after a while but how can you deny your child the opportunity to walk around when they want to but are unable to do so independently?

One of the things we find most difficult about having a non-mobile child is that she wants nothing more than to be mobile and the obstacles we face trying to give her the form of mobility she desires. She wants to be up on her feet like every other 3 year old but it isn’t always possible.

We decided to purchase the Firefly Upsee and our only regret is that we didn’t do it sooner.

It is a completely different experience for Annabelle, and we are taking it slowly but already we can see the amount of benefits we will get out of one piece of equipment.

We will be able to explore more places, Annabelle will be able to touch new things, she will be able to assist us with the housework which she asks to do on a daily basis and we will be able to use it to aid her therapy.

Annabelle will be able to take full assisted steps. Currently, as a result of increased tone her steps and her gait in her walker are poor and not controlled. The Upsee allows us to fully control the movement in Annabelle’s legs so we can work on the correct placement and weightbearing through the whole of her feet rather than just through her toes!

We are beyond excited for the opportunities she will have whilst using it.

Mainstream Nursery

Annabelle started mainstream nursery at 8 months of age, before we knew she had cerebral palsy.

As Annabelle’s disability became more apparent and she left the ‘baby’ room to move on to the ‘toddlers’ room it became more apparent that she would need extra support and equipment whilst in the nursery setting. She loved the ‘baby’ room as was able to sit with the staff, read books and cuddle for a large proportion of her days there but she needed to start playing and interacting with the other children to aid her cognitive and social development.

Annabelle takes a while to settle with new people so every room move led to us being anxious as to whether she would resettle and us questioning whether mainstream nursery was still right for her.

We have been very lucky and Annabelle has taken to most of the nursery staff. The sheer love most of the nursery staff provide Annabelle is indescribable. There has only been one member of staff who happened to also be her keyworker at the time that she was not able to create a bond with and that was primarily the time where we were really considering whether it was time to move her to a special needs nursery.

We persevered and are so glad we did because quite soon after she was allocated a new keyworker, one with more experience who improved nursery life massively within a few days.

Every change of room and keyworker from then on was always positive.

Annabelle move to the final room ‘pre-school’ slightly sooner than she was meant to as the previous room was very small meaning it was a struggle for Annabelle to access everything with her equipment.

We wanted her to have her walker with her and wanted her to have a standing frame there but there just wasn’t the room so collectively it was agreed she would make the move to ‘pre-school’ where she would be back with a previous keyworker so there would at least be some element of familiarity despite the change of room and the last increase of other children who would be around her.

We knew this was 100% the right thing to do for her as she needed to develop some independence within nursery. Soon after joining the room she created a new bond with a different member of staff and since then we haven’t looked back! She quickly became Annabelle’s keyworker and I cannot praise her enough. She cannot do enough to help Annabelle and the bond is magical.

Due to COVID we pulled Annabelle out of nursery for 15 weeks. We were nervous when the time came to send her back. After 15 weeks of only seeing her dad, her sister and myself would she still enjoy nursery?

Would she settle back in?

We didn’t need to worry; she was so happy to be back and overjoyed to be back with her keyworker. The break from nursery was only positive. She went back a different girl. She is more confident, her speech had improved, she is happy being left to do her own thing and looks forward going in to see her friends, whereas before she was just interested in seeing the nursery staff.

Seeing how the staff in ‘pre-school’ are with Annabelle and making sure she is included in everything, has made us realise that mainstream is a great place for her and we hope that we are lucky enough to find a school for her next year that has teachers that can provide the same care and compassion as we were lucky enough to find at her nursery!

 

Versatility of Firefly Equipment

Whilst the Firefly equipment is designed for special needs children it is much more versatile than that.

Our ‘typical’ child Isla is the biggest fan of the Firefly Scooot! It is her favourite thing to go out and adventure in when it’s too far for her little legs to carry her.

Our house is full of specialist equipment – Numerous chairs, two standing frames, a walker, a sleep system and so the list goes on. All of the equipment helps Annabelle do all of her daily activities and we are so grateful we have it all but it is also so big and bulky. Consequently, we have less space than we would like for all of the other fun things children like to play with.

Annabelle seeing her little sister enjoying something that we call equipment makes her happy.

She is able to use it but so is her sister and that is a rare luxury.

At present, Isla enjoys sitting in the Scooot and letting us push her along, but once she starts to self-propel this will be a huge motivation for Annabelle to practice her self-propelling and we cannot wait for this! She can watch Isla, she can learn from Isla and then she can try to do it herself.

We always try our very best to adapt things so they are suitable for Annabelle. We want her to use everything she would like to, so she doesn’t miss out, but this involves planning and being creative. The Scooot is so easy, it doesn’t require adapting it’s just ready to go for which ever one of them wants a turn!

Thank you Firefly for creating such a versatile piece of equipment!

Our Social Media Presence

Following Annabelle’s diagnosis, I was lost.

I have always been that person who needs to understand everything I am doing to be able to do it. How could I parent a physically disabled child with no understanding of how to support her? I couldn’t.

I didn’t know what to do or where to go for help, so I did what most people do when they need answers and asked Google. I researched late at night for hours and hours for months and months. ‘What is cerebral palsy?’ ‘What therapy is available for cerebral palsy?’ ‘Will my child walk?’ ‘How can I support my child?’ and the list goes on. There was so much information to digest.

I set up an Instagram page in January 2018, two months after Annabelle’s diagnosis and a Facebook page shortly thereafter. I searched for other cerebral palsy families on Instagram and connected with as many as I could and what a relief to know we weren’t alone in this after all, there were other parents out there that had already experienced what we were feeling.

I quickly began to get ideas from their posts ranging from equipment recommendations to therapy ideas. I also joined as many cerebral palsy Facebook groups as I could find, the more groups I could find, the more information that was readily available for me to learn from.

The pages quickly became a place for me to hide behind when I wasn’t comfortable talking about Annabelle’s diagnosis. I didn’t want to tell everyone we knew individually as I still didn’t know enough about the diagnosis or her future to answer all the questions that would follow.

Once we had told our immediate family and friends, we then shared the pages with our extended friends and family so that they could understand a little bit about how her life was going to be a little bit ‘different’ for Annabelle going forward.

For a long time, I couldn’t say the words ‘cerebral palsy’ without my eyes welling up so communication via social media made it that little bit easier.

I began sharing photos of what we were doing at home to try and help improve Annabelle’s limited mobility and the photos of her in her therapy sessions which took place numerous times a week. Writing about what Annabelle’s day consisted of, for family and friends to read, meant that without me having to explain to several people, everyone was able to follow our posts and have a greater understanding.

Following others on a similar journey really helped me to come to terms with Annabelle’s diagnosis and for that I will forever be grateful.

Other cerebral palsy families began to follow our pages and we built up our own community.

I want our social media presence to also be something that will help others, so I share the positives but also the challenges we face on a daily basis as well as recommendations and home therapy ideas.

There is always going to be other parents out there that are at the point of diagnosis and searching for other families to try and relate to and for me, if they stumble across our pages and feel less alone or are able to learn something from us then that is a massive positive to us having a social media presence.

Social media is often seen as negative but for us, when we have a question, need advice or simply want people who understand to celebrate a success with us, there is an army of people right there waiting to support and celebrate with us!

Navigating through the ‘threenager’ year

We sailed through the terrible twos but now find ourselves with a ‘threenager’.

The Urban Dictionary describes a ‘threenager’ as a: ‘Three-year-old child spouting attitude like a spoiled teenage.’

‘I want to do it on my own – Let me do it!’

Currently we have a child who doesn’t want help. Annabelle wants the independence that other three-year olds have (and rightly so). The difference is she is not physically able, so that independence is not to the level she desires. We do not have the luxury of sitting back and letting her figure it all in her own time because sometimes she simply isn’t able to. We are challenged with getting the balance of support we give to the correct level or we fuel the frustration and can be faced with ‘threenger’ attitude and tantrums.

‘I’m not tired!’

Annabelle is of the age whereby she doesn’t think she needs to nap but if she doesn’t have a late morning nap, any therapy scheduled for the afternoon becomes a challenge as she simply does not have enough energy to give it her best. When therapy is essential for your child, you want nothing more than for them to give every session their all but sometimes that just isn’t possible. Some sessions go well whilst others she has her own ideas and simply does not cooperate, most often because she is just too tired.

‘I want to feed my self – Don’t help me!’

Annabelle is capable of feeding herself, but it is a slow process. The time it takes to get a meal inside her is at least double when she is doing it alone. The technique of getting food onto a spoon or a fork and to her mouth without it falling off can be tricky for her and often requires more than one attempt. When she is hungry, she just wants to get the food in without delay, so frustration can kick in when it doesn’t quite go to plan but the ‘threenager’ in her is determined to keep trying.

We also have a hectic routine, before the current pandemic we had somewhere to be everyday, so time was never on our side. We battle to find food that we can give Annabelle that is healthy but that she can manage to eat at a relatively quick speed to ensure we get out the house on time. She has no concept of time unless it works to her advantage. The alternative is to take the risk with harder to manage food and offer her help and hope that it is the one time she will agree and let us assist when she is struggling.

Despite the challenges and difficulties that arise, we are over the moon to have a ‘threenager’. A ‘threenager’ who is going through mental changes and learning who she is as a person just like all those other three-year olds! She is testing her boundaries and with the right guidance and a bit of teeth gritting, soon enough we will come out the other side and will move onto the new challenges of having a four-year-old!

Fundraising for her Independence

Fundraising isn’t something that is easy to do.

Asking people for money isn’t something that comes naturally to most people, but special needs children come at a massive cost. You want to give your child the essential treatment, therapy and equipment they need to give them a greater chance at life but are restricted due to the lack of available funding.

We made the decision to begin fundraising with Just4Children in December 2018 when we realised that Annabelle needed more treatment, therapy and equipment than what we could afford. Since our fundraising journey began, we have had family and friends join us taking part in sporting events, pubs run by family members holding charity events, various businesses displaying our donation tins and support from our local rotary club.

Our most recent fundraising project wasn’t about us doing a challenge or someone holding an event on our behalf, it was about ANNABELLE doing one herself.

Annabelle always sees her daddy taking part in sporting events and she loves cheering him on and seeing his medal at the end.

So, when we found an event that Annabelle was able to participate in, we jumped at the chance. Why shouldn’t she be given the opportunity to take part in an event! Between 15 June and 15 July Annabelle took part in the Superhero Series challenge and was able to raise money towards our ongoing fundraising for her Selective Dorsal Rhizotomy surgery which is not funded by the NHS for children with Annabelle’s level of cerebral palsy along the way.

The event involved her walking and cycling and impressive 20km over the course of the month. This may not seem like a big challenge, but for a little girl, only three years of age, who cannot sit, stand or walk independently it was a tremendous challenge for her!

The effort she had to put in was on another level but to see the pure excitement on her as she finished the event outside of her nursery where her friends were waiting and chanting her name as she crossed the finish line and receive a medal for her efforts was incredible. We could not be prouder of her determination and courage at such a young age.

Whilst our fundraising journey continues, Annabelle’s challenge has helped get us that little bit close to getting her the operation she desperately needs. The self-funded surgery, will involve cutting the sensory nerve fibres which are sending incorrect signals to her brain, followed by intensive physiotherapy to help to reduce the spasticity in her lower limbs and give her a greater chance of independence.

Fundraising isn’t easy but how can we deny our precious little girl of this chance…. we CANNOT!