Let’s rewind back 7 years just for a moment..

I’m 32 weeks pregnant, my husband and I have spent the last few weeks processing everything we have seen, and heard regarding our unborn baby.

Throughout all the medical terminology I couldn’t even pronounce, let alone understand, it was one Consultant who left a scar in my memory.

This particular consultant told me that IF my son would survive birth, and IF he lived past a few years, he would probably live until he was 7 years old. 

I mean how can someone predict this?

Of course, back then I hoovered up every last word they said, I knew I would continue with the pregnancy, and fight for my boy, but these words also crumbled me into the biggest pile of fear I have ever experienced.  

Giving a parent a number, in my opinion is the worst thing you can do when talking about their diagnosis.

It creates fear and it can really impact a parent’s mental health.

Giving a number can affect really happy times too, it’s like a great big cloud hovers over you, very quickly changing the mood.

I can be smiling and laughing, enjoying a precious moment with my son, then have an overwhelming need to cry, these tears then blur that moment.

It’s like a ‘too good to be true’ moment, you’re scared to be happy.

Special moments such as birthdays. I struggle with them every year, and now dread this upcoming one more than any other.

It’s all down to being given the number 7.

I understand some of you reading this may want to tell me it’s just a number, and I hear you on this and I completely agree.

Reality is however, when your mental health has been bashed repeatedly for the past 7 years, and your emotions are too complex to understand, you lose all rational thinking, at times, leaving you trapped inside your memory, reliving the conversation that has haunted you for many years. 

The impact from a conversation is huge, and I know there are so many other families who were given a number too. 

Is it time to change how these conversations are done?

It’s only after many years of battling through as an advocate for my son that I can now see that numbers are just numbers, and there are so many specialists and pieces of equipment that can help a child.

However, back there in that room, scared for my unborn baby, I was fragile, overwhelmed and had no clue at all around disability.

Because of this, I held onto something I could never let go of. It’s tattooed. So, all my rational thinking, experience and knowledge becomes irrelevant when I’m struggling emotionally and mentally. 

This is the thing with our mental well health, it doesn’t matter how much we’ve researched, how much hope we have, or even how happy we are, it can be impacted at any time, by anything, from anyone.

It can strike, and bring you so low that nothing anyone can say can bring you back up.

I often describe these times like being on a boat, I have to sail through the motion, and pick myself up when back at shore. 

I would love to know how different my emotional and mental wellbeing would be if I wasn’t given a number.

It’s impossible now, but is it time to change how diagnosis conversations are led? For me, it’s too late.

However, if I can share just one piece of advice around this, it is to be kind, and true to yourself.

Talk openly about it, as denial or pushing things backwards can be so detrimental to our health.

Be proud of who you are and your family. 

Much love,

Rochelle

In my previous blog, I spoke about how March was the month for me to start a fresh chapter, a time for me to really dig deep and do what I want to do.

I must say, things are moving rather quickly and I love it!

Over the past year, with all the home-schooling and virtual learning, I have been able to get an insight of Zachariah school life, and get a real good feel of how his day looks when at school.

I have also had much deeper conversations with his teachers around his development, and how best to help him push further and achieve new goals.

Over that period of time, there were also conversations around me possibly looking into teaching/working in the school myself.

Like I had touched on in my previous blog, I have put my all into Zachariah, home schooling included, I’m pretty sure I came across as a teacher’s pet, haha!

The thing is, I really enjoyed it, I loved preparing the lessons, and enjoyed seeing them come to life.

I learnt so much about Special Education, learning through play and exploring the senses. 

It was a once in a lifetime opportunity I feel, to get an insight into what Zachariah gets up to at school and work with the teachers, a lot different from notes in the home diary at the end of the day.

I now really know what sensology is, and why it is used. And I see the importance of repeating activities, although this was probably the part I struggled with the most. 

All this got me thinking.

I did once have the dream to be a teacher, I went to College and University with this in mind, I have qualifications. I have the passion for children and giving them the best opportunities in life. 

But…

Do I have the capacity mentally? 

Am I able to commit to helping other children?

This isn’t a job that you take lightly, nor is it something you can just walk into, and or walk away from. We joked about it, but is there something in this. 

I had spoken to Tim about going back to work a few times, and about starting a career, but we had always gone round in circles, coming back to the fact that Zachariah needed me to be available, and the constant jobs, appointments etc would be too hard to juggle. 

I guess there’s an element of fear too, I haven’t worked in a structured job for 7 years, as I started Maternity leave in March 2014, and never returned as Zachariah needed full time care. 

Then one day I just so happened to be looking on the council jobs website and came across a Midday job at my son’s school!

It made sense!

With very little confidence, I went for it.

I only went and got the job!. 

Eeeeek! 

I have no idea if now is the right time, do we ever truly know?

However, I feel ready to commit, and start a career, and this job seemed the perfect place to start as the commitment was only a few hours a day, term time only.

With this I have also started a Diploma in SEND. It feels so good to be doing something again.

I had started to feel deflated and almost given up on the idea of working again, being a full-time carer is an incredibly huge thing to do, but it doesn’t have to be your everything.

There needs to be space for YOU too, whether it be a career or something completely different, YOU are enough to achieve outside the box you may have put yourself in.

Much love,

Rochelle

It’s been a while…

I have just opened up my blogging word document to find that it was exactly a year ago that I last typed up any thoughts.

It was about no other than the beginning of the pandemic, around the fears of the unknown, and realising once again how vulnerable my son is.

Anyway, I’ve left that there, as we speak and hear enough about what’s happening, so I wanted to bring something a little different, well I’ll try, as everything in life seems to be associated with or because of the pandemic.

Zachariah returned to school yesterday and I am feeling a little lost, but also feeling re energised, I don’t know about you, but the sunny weather, whether it be cold or hot, instantly gives me a 10% booster, and creates a new perspective on particular aspects of my life at that moment in time.

I believe the 1st of the month has a lot to do with it also, as it’s a new beginning, a fresh start…add the factor of it being April in there also, and we feel that spring vibe, and the prospect of new life! 

But before we spring into spring, let’s just look at the journey getting here…

Life had become a little mundane in some ways, the same get up routine, the same logging onto virtual school, the same feed, nappy, sleep, play routine, the same evening routine, and the occasional walk (the same route I must add).

Zachariah needed school again, and I needed time to find myself.

I say this as I roll my eyes, as the number of times I have said this is unreal, I never quite manage to find myself when I’m not with Zachariah 24 hours a day.

Since he was born, I have dedicated my whole world to him, like many mothers do.

Tim continued to work full time, whilst I did bits in between, with my main role being Zachariah’s no1, but no real career or passion.

Yes, I absolutely love my little business, and yes, I have loved the projects I have done over the past few years, but nothing has ever been big enough to fill the whole gap, or fill a long enough period of time.

Events have either got in the way, Zachariah has needed me more, or my mental health has created a huge barrier preventing me from pushing that little bit further with something.

It’s almost like since giving birth to Zachariah, there has been a fog in my brain, a blur that has held parts of me back.

I can be my own enemy in this too. I feel guilt.

I feel less confident these days too, I have definitely lost myself in many ways over the years. 

I almost hide behind my son. And this is exactly what I have been doing over the past year.

We were told to shield at the beginning, and I have taken this to a whole new level, where I have almost put myself on a shelf, becoming just an attachment to my son.

I have dedicated my whole time to being his no.1, even though we’ve had carers some of the time, and he did a few months of school before Christmas.

I just could not pull away from the Mum role.

I keep asking myself why I do this, why for almost 7 years, I have not been able to break free and accomplish something for ME.

I know deep down that bigger thing are achievable, caring for a young boy with complex needs or not.

We have everything set up now. We have the adaptations, the carers, the school.

Why oh why am I unable to fully find myself again.

I get to points where I feel I have, but then I get overwhelmed, crash and burn out, and this state is really difficult to get out of.

I have to start again from scratch, which leads me on to now…

I feel this month is the month to really work on this, like April is the new January, and really pull out who Rochelle is and who Rochelle wants to be.

It’s time to stop hiding behind my son, who no longer needs me every single minute of the day. 

What is the plan I hear you ask?

Well like I said earlier, I am very easily overwhelmed, it is no secret, therefore I need to take it slow and simple. 

I started with a spring clean of the house yesterday, and today I have started writing again, as this is what helps my mental health, getting everything out on the page, in a chaotic, but meaningful way.

I am well aware that I am not the best writer, but there is a sense of freedom in writing, so I try not to edit or over think.

I feel this is a great, comfortable step, as it will help me brainstorm, and also filter my thoughts.

I have also started to reach out to a few friends I have disconnected from to arrange walking dates in the local park, and cut down on the social media.

This step was a big one, as I feel I have been very active with posting and engaging on social media, but not so much personal conversation going on, so there’s layers of me that have been blocked out so to speak.

It’s so easy to be present behind a screen, not so easy in body.

April is looking exciting, and I am feeling like I can achieve it, as I haven’t set myself some silly out of reach goals, which I feel is the key point of my blog today.

Much love,

Rochelle

Happiness. Joy. Love.

Being Happy is a personal journey, with many factors contributing to the level of happiness we may feel at any one time. It comes in many forms, whether it be a small feeling of joy, or an overwhelming and intense joy. It can be taken away unexpectedly, or brought on when we least expect it. Happiness is something we work towards, it can be in our control, but also out of our control. It’s a state of mind, an emotion, a feeling. It’s complicated, yet amazing.

For me, happiness is the most important thing for my son.

The levels I will go to, to ensure I keep him happy cannot be measured.

A few years ago, we started the EHCP journey. I was asked what my aspirations were for Zachariah, and told them to list them. My first wish was for Zachariah to BE HAPPY. My steps to success for this particular aspiration was to keep on top of his medical needs to keep him comfortable.

Nothing extraordinary about that right?

Not the case in reality, I was greeted with negativity over my goal, as it could not be measured. I was told I could not have the aspiration of happiness for my son because they did not have the ability to keep track of this. I was absolutely gobsmacked! Does it really matter if you cannot measure it, I, his Mother can, and that’s all that matters.

The point I’m making here is, what is the point of setting targets, if your child is unhappy. What do we achieve, if we push our children and decide what we want them to succeed in if we are not nurturing one of the most basic needs.

I truly believe that a happy child will achieve everything they need to.

What makes Zachariah happy?

-Nature

-Family and Friends

-Music

We are a music loving family, (well in a non professional way anyway, as I for one cannot hold a note or keep a rhythm, which Tim finds it hilarious!) But more in a way of enjoying different types of sounds, melodies and music. We’ve always got a CD or the radio playing in the background, or use Netflix for the live tours, two of Zachariah’s favourites being Tayor Swift and Hans Zimmer. Music has an amazing way of touching our emotions and speaking to us.

During these strange times, we have used music to lift our spirits, and promote a happy atmosphere for us all to be in. There are so many pressures right now to be doing the right thing. A huge one being to homeschool our children and keep their academic development on track. What I want to get across to you all within this blog, is happiness is above all this, our children, as well as us, are experiencing new and strange territory right now and there is no right or wrong way to react to it.

Yes, look at the school work and create a timetable to ensure different subjects are being covered, but have fun too, and really sit down with your children, spend time with them and maybe you will learn something new about them. Let them take the lead once in a while. Use this time to do something different and just BE.

In a world that is experiencing great sadness, be the smile.

The following blog was written a few months ago, our night carer is currently on hold until we can allow carers back into the home…

I have written many blogs around the subject of carers, and the feelings that come with it. It comes with an inner battle, you know you need the help, however you know you are also inviting somebody into your space, to help care for your child.

It feels pretty normal now, I love the company, the help and the second opinion when things may not be straightforward. Our carers have become part of the family, new routines have been formed, I’m left wondering what all the fuss was about.

However, introduce a night carer and things start to feel strange again.

Sometime last year, during a Child in Need meeting, my continuous struggles with sleep came into conversation, which followed with an overwhelming, emotional panic attack. I had gotten to a point where there was nowhere to hide anymore. I found myself feeling extremely exposed and vulnerable, with my exhausted self on full show. The anxieties, nerves, tiredness, and I guess dent in my pride created a huge dramatic attack, where the tears would not stop pouring down my face, and my hands were unable to stop shaking.

I felt ashamed to show my true colours of exhaustion.

Voices in my head took over any reasoning I had.

“But you already receive daytime help”.

“You only care for one child”.

Despite the voices in my head, it was time to have the conversation about more help, and time to accept it to myself, that we needed it. We received respite from our Hospice, however this is currently 7 nights per year, with them not being able to provide more, with so many children under their care, we needed another solution.

It wasn’t an easy process, and to be honest, I don’t mind this, as it ensured that we were getting the right care, and package for our family! Various meetings, panels, phone calls and emails, oh and not forgetting the paperwork! I guess I held back quite a bit too, I knew now that I needed it, but I was still living in the fear of the unknown.

The first night was strange…

We didn’t know what to do with ourselves, or when to take ourselves to bed. Our new carer was no stranger to our family, but a friend. The only way for me to finally accept help, was if I knew who the help was. Fortunately for our family, our Carer was seeking overnight caring roles, so the timing just seemed so perfect.

So, for one night a week we are left to sleep undisturbed for a whole 8 hours!

I’d love to tell you all that I am a new woman, with newfound energy, but the realisation is I’m still a tired mamma! I guess there is just no pleasing me ey!?

No, I joke, I just like my sleep and like lots of it! Our night carer is a true blessing to our family, I just hope they settle into our little family, like the others have, as the well-being of our carers, and their happiness is important, having the right people too. Zachariah has such a special bond with all who care for him, they all bring something different to the home. Our new night carer brings a gentle side, and the passion to pamper Zachariah and really get to know him.

As we are all aware, some more than others, we are living through a huge pandemic. A very serious, life threatening virus has spread across many countries, and is becoming more of an issue over here in the UK.

This will be affecting every single person in a different way.

The NHS is under huge pressure with more and more patients becoming poorly.

The Government has the whole country listening to their every word as they lead the country through something none of us have experienced before.

Key workers are on the front line keeping the country going, whilst putting their lives at risk.

A huge thank you to every single one of the above for their time and efforts at this time!

For us as a family, living with a child who is classed as vulnerable with medical needs, it has forced us to isolate with extreme measures, to prevent our little boy from contracting the virus. Which is absolutely fine, as it’s necessary to do so, and will give Zachariah the best chance throughout this time. To some degree, we have had experience with self-isolation before, and keeping people away from the home if they feel unwell. Zachariah is under respiratory, and takes prophylactic antibiotics, he is prone to chest infections and classed as vulnerable. We limit activities during winter months and monitor his health daily. However, this form of isolation is a whole new level.

Although we are counting every single blessing at this time, we have a safe, accessible home and garden for Zachariah to continue to thrive, we have found challenges in form of communication.

For Zachariah, he needs the whole sensory experience to truly benefit from other people’s company. He needs you to touch his hands or face, hear and feel you there with him, and smell you. He bounces off the atmosphere of laugher, and conversation. He requires you to be present with him to be able to really engage with you.

With that in mind, facetiming his family and friends has been an extremely confusing time for him. Hearing their voices through an iPad has almost shocked him. He knows the voices but is left wondering where the interaction is, that would usually come with it.

In normal circumstances, family, friends and teachers will go straight in for his hands to greet him, and then move to his wild hair and brush their fingers through it. This is what Zachariah has demanded over time, everyone has spent time to get to know this about Zachariah and built their own way of communicating with him. Now that we are on lock down, with no one in the home other than his Daddy and I, he is really missing the daily interaction with his family, carers, teachers, and friends.

But we must look at this as a blessing, technology right now helping so many people stay in touch, and for that we must be grateful.

Other blessings may include having the time to be still with your children, start something new with them, or work on projects you thought you may never get to do.

We have just started our 6th week of self-isolation, and the cracks are beginning to show. It really does take a community to raise a child with Zachariah’s care needs, so when the world goes on lockdown and it is down to you to wear all of the hats, it becomes extremely tiring. We have gone from carers several times a week to no help at all overnight, which has taken its toll on us both as parents. I have tried my best to keep a routine, give myself time out, create a jobs list to work through, and found new activities for us to try as a family.

I want to give a huge shout out to my fellow parents/carers out there, who are home-schooling, and being the sole carer for their child right now.

For those, like us, who have had to shut the door from carers, medical helpers and respite. For those who are struggling to cope with the everyday demands of looking after a child with disabilities.

For those who are experiencing new levels of anxieties as they fear themselves or their child contracting this awful virus.

For those who have children too poorly to be home.

For those who must go out to work.

To every parent/carer out there… you have got this!

You are all doing amazing, I am sure of that! Keep on going, and we will get through to the other side together.

I wanted to write about how Zachariah uses his eyes, sounds, body language and charm to communicate with those around him.

It is an extremely confusing time when you go through diagnosis.

We started this before Zachariah was even born, we were told it was very unlikely he would survive, and even if he did, he would suffer with profound disabilities.

In such negative tone, they wrote my sons life off, they didn’t take a moment to consider that he had been living within me for 30 weeks, and was already life.

I almost feel blessed that my husband and I took none of this, and took no time to think about our options, we just had to continue with pregnancy and do everything we could to ensure he made it through and went on to enjoy life, without disabilities holding him back.

I remember thinking about how his disabilities would look, and wondered how he would develop physically, not sure why, but this became my focus.

I guess in my naïve way of thinking, I saw physical abilities as the most important development.

Fast forward 5 years and I have a completely different way of viewing us a humans, and been blown away by the power of communication, in all of its forms.

It was quite a fast process of diagnosis when Zachariah was born, as there were various findings during the last weeks of pregnancy, however it was a slow reveal of how this would affect his life.

But I used my energy to build a connection with my newborn and loved him along the way.

The first discovery was his vision impairment, and it was something I hadn’t even considered, and it did scare me a little as I wanted Zachariah to see all the beautiful things this world has to offer, however, with the help of Blong Children UK, vision teachers and Zachariah himself, I slowly learned that there is so much more this this life, and unfact Zachariah could see, but he could see something very different to myself and others around him.

We took nothing for granted and became creative. Zachariah began to learn to communicate through touch and sound. He found his own way, and began his own communication journey with close people.

After this, we had speech and language on board, who primarily helped Zachariah with feeding, but also touched on communication.

They introduced us to sounds and the joy of turn taking. This is where Zachariah started to use his voice to communicate key emotions and feelings.

Since then his noises have developed and increased, he now uses different tones, pitches and uses his mouth to create such wonderful sounds to express himself.

He has grown a passion to sing as loudly as he can when in a good mood, and mastered the art of a fake cry when he is being a demanding diva.

It was SALT and Portage team who also started object of reference with us a method to communicate to Zachariah what he was doing next in his routine.

For example when we are going out, we give him his yellow ducky and say “going out Zachariah, going out”. This has been a huge success as we build it up more and more.

And then there was the body language. And this is where I am utterly blown away with my son, as he has made his own way of communication using his head, eyes, hands, arms, legs and feet.

He is able to wave his hands and arms to say hello, but also to express discomfort. Only those who take time to get to know Zachariah will be able to tell these two key messages apart. And to make Zachariah even more special, he is quite selective with who these people are, as he knows who gives him the time, and patience and who doesn’t.

He is a 5 year old boy, who has observed relationships and really taken in who his close people are.

I know this because I have been extremely close to him, as his Mummy, and witnessed him grow closer to certain people and close off from those who haven’t given him the time or energy.

In addition to all this, he has really become a real social butterfly, who uses his charm to draw people in.

He flutters his eyelashes, grins, scrunches up into a cute pose and sings as loudly as he could to catch the attention of many. And if you’re lucky he may blow you a kiss!

He has recently been described as a Head Boy figure at school just for this reason, as he will talk to anybody willing to talk to him.

He does the calling, then needs you to come into his world, and communicate with him in a way he knows best, using touch, sound and good energy.

This boy is more aware than he’s given credit for sometimes.

The NHS state that ‘Epilepsy is a common condition that affects the brain and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works.

They can cause a wide range of symptoms’.

Just like in Zachariah’s case, epilepsy can be linked to other conditions, for him it is his diagnosis of Lissencephaly (smooth brain) that causes epilepsy.

It affects him every second of every day. There are no breaks or moments of relief. There is no cure.

Epilepsy comes with fear and uncertainty. Its a thief. It doesn’t care. Epilepsy will strike big at any time.

Epilepsy causes pain, worry, confusion, and heartbreak.

What we’ve been told so far…

“Your son has life limiting epilepsy”.
“Your son has life threatening and drug resistant epilepsy”.
“Your son lives with constant epileptic activity and there is not much else we can do for him”.
“Your sons epilepsy is not severe enough to be considered for CBD Oil, but it could kill him”.

What we see…

Our darling boy staring into space, experiencing involuntary jerking, spluttering and vomiting, stiffening, unable to communicate, unable to prevent his eye flickering, shaking.
Our son losing skills he took so long to conquer.
Our child unable to get more than 4 hours of sleep per night due to seizures waking him up, and keeping him awake. Then unable to concentrate at school as hes exhausted.

What makes us proud…

Zachariah continues to smile, develop and enjoy his life.
Zachariah will not let epilepsy take a hold of his life, as he will push through and carry on.

How epilepsy affects daily life…

Zachariah takes meds twice daily to help ease his seizures. He has 3 monthly clinics to discuss and review his epilepsy, from these meetings he’s had various EEG’s, MRI’s, trialled different treatment such as the Keto diet and had his meds reviewed. Zachairah cannot leave the house with rescue meds now, as he can go into generalised seizure at any given minute of the day.

There is fear, but there is a plan, and there is hope.

My biggest battle with Zachariah’s epilepsy is the communication barrier. Being non verbal and having severe learning difficulties, he cannot tell me when seizures are coming, happening or when they’ve been.

I have watched him for 5 years and researched his epilepsy every day, to make sure I have the most information possible to advocate for him at the hospital.

It is a huge responsibility to say the least to care for someone with epilepsy, it often worries me that I may get it wrong, I may translate a false seizure or miss one.

This worry cannot get me down however, as I must stay focused and give my son the best care and advocacy.

You often hear parents/carers comment on the loneliness of caring for a child with epilepsy, and it can be true, but I have found that more and more of us are talking so openly about it, being real and raw to communicate how heartbreaking it is.

I have witnessed so many of my friends soldier through the unthinkable, and seen their children become true warriors as they too fight it daily.

We are not alone. We are a community who must support each other.

The picture is of Zachariah and his friends. All 3 of the boys have the same condition and battle epilepsy every day.

They are strong, and determined. They are warriors!

We went on quite a few adventures over summer, as well as trying out new things. Volleyball was a particular favourite of Zachariah’s during a stay and place session at the Hospice.

However, sticking with the sporty theme, there is one day that has really stuck out,the VIP trip to the Etihad Stadium to watch a Manchester City match!

This huge opportunity came as a big surprise over the summer as the sports coordinator from Zachariah’s school was seeking out families who would like to try out their new box.

The school has a special connection with City, they come in and do sessions with the children regularly, therefore the sports coordinator has been involved in making this new box as suitable for children with disabilities as she could.

We would be lying if we claimed to be huge footy fans, but we’ve always enjoyed both Mens and Womens World Cups, especially this year as I went to school with one of the England players and didn’t shut up about it to Zachairah who was very excited.

We do however, have some very close friends who are huge Manchester City fans, and therefore Zachariah was naturally a supporter whether he liked it or not.

The day itself could not have gone any more perfectly, we were treated like royalty from our very first interaction over the phone, to waving goodbye in the carpark.

We arrived a few hours early to avoid congestion, had designated parking and were very quickly greeted at the car by some extremely friendly faces who welcomed us wholeheartedly.

They introduced themselves, one grabbed our bags, whilst the other took control of Zachariah’s wheelchair. It was so lovely!

Getting into the stadium was a swift as could be, we were fast tracked straight through after a sharp bag check (Zachariah could have got the memo and come with less baggage.. 4 packed bags!). We then skipped through the VIP lounge and headed to our Box..The Sensory Box.

We were utterly blown away as the door was opened. We could not keep the smile of our faces as we stepped inside a beautiful space to watch the game. The was a huge window to look upon the match, article grass for flooring, clear walls for simplicity, kitchen accessories, refreshments and place to put equipment and meds.

It was warm. It was safe. It was quiet.

If this was not perfect enough, there was another door. Behind was a sensory room. Lights, interactive floor, bubble tube, vibration. There was a stock of sensory toys and ear defenders. It was perfect. I felt at last we were understood as a family.

In addition to this we also had our own seating in the stadium if Zachariah was able to sit outside and get the full atmosphere of the match. Which he did!

He absolutely loved every single second of it! With so many anxieties leading up, which had previously made going to a football match seem impossible, we felt at ease.

Zachariah shouted when everyone cheered, and laughed when everyone booed. He loved the atmosphere so much.

Although Zachariah was able to watch the game outside, it gave us comfort knowing that if it became too much, we could just pop inside and sooth him in the sensory room.

Having Zachariah’s needs understood and met in such a beautiful way has meant the world to Tim and I.

But we were also able to give feedback and help make it even more accessible, with this new partnership, we can help give other families a time of their life!

We had such an amazing experience and cannot wait to go again, I mean Zachariah has his full kit now, must make use of it.