Some stories from our service users and their families
Conor
When someone mentions Camp Mohawk, or dare I say asks me if I know of the magical place, I immediately smile as I get catapulted back in time through my memories to some of my favourite and most crucial teenage moments- ones which not only shaped my life but saved it also.
I would like to tell you why and how Camp Mohawk is so special to me; let’s go on a little journey:
The first time I went to Camp Mohawk I was already nearing what would now be known as a crisis point- my behaviours had escalated and I was in sensory overload frequently- be it due to education, peer relationships, or the ever turbulent tides of emotions and navigating a neurotypical world.
So, when my mother suggested a day out surrounded by other people like me, I was not best pleased. I thought I was being given up upon as the teachers and peers had told me only those who can’t function or are ‘broken’ receive some support. They shamed me for being autistic and I believed them!
You can imagine my reluctance when I got there and although I was greeted with incredibly friendly staff my suspicions remained- was I being tricked? Maybe.
What changed it for me was my second visit where I had a period of sensory overload, or a tantrum/being naughty as others called it. I ran off and expected to be shouted at, put in time out, told never to return, or otherwise punished. Instead as I sobbed into my own hands out of shame for acting this way one of their staff in that beautiful green shirt sat down with me, smiled at me and told me it was okay just to let it out. I am safe here.
I cried harder than I think I ever had at that point in my life.
I became far more positive about attending Camp Mohawk from that time on, eager even, but that’s not to say I wasn’t without substantial difficulties or trepidations. I was still a teenager trying to navigate the complex world of education, relationships (friendships, romantic, teacher-student), I had clinical depression, anxiety, PTSD, autism, disordered eating, identity and self-esteem issues… the list goes on.
Mainstream health services had no time for me- they put me on waiting list after list before telling me I needed to go to another service and yet another list. I felt unwanted, a waste of space.
However Camp Mohawk were always there at weekends and holidays, greeting me with a smile and playing games with me while never expecting or forcing me to mask. They helped me feel human and loved/valued when very few others would even give me the time of day- they validated me and helped me develop my identity as someone who’s proud to be autistic. They always saw me as Conor, never as my conditions or my bad days- this did not define me to them.
Unfortunately they alone could not stop my slip into crisis, there were just too many factors and they weren’t there as medical professionals; it wasn’t their duty but they reacted with care and support akin to what perfect family would extend.
Even 8 years past my worst crisis I consider Camp Mohawk to be my family.
What their love and support did was slow my descent to crisis and massively reduce the severity of it. I can confidently say if it was not for Camp Mohawk I would be dead today, that’s the simple truth.
They gently encouraged me to come into my own after my darkest moments, showing patience equal to that of Saints in every one of their staff. My mother formed a close-knit support group with other parents that helped her get through those dark days and my sibling had respite when it was all too much.
I engaged with Hawks throughout (a teenage group) and learnt there were others like me, struggling as I had, and that I wasn’t alone. We didn’t have to mask around each other and for once I could be a normal teenager. My confidence grew, my emotional understanding skyrocketed, my ambitions and interests were encouraged… I was valued and they gave me back my humanity that had been stripped away by the brutal world in which we live. No. They guided me to my humanity that had always been there, and the potential I had, but could not see through the pain in my soul.
It’s been many years since then and I still carry the love they gave me in my heart which I try to share with all those lost and wounded souls I meet- all those like me.
I am now the first Expert by Experience to qualify as a C(E)TR (Care and (Educational) Treatment Review) chair in the South East and South West of England, I am guiding co-production at a national scale for the NHSE/I (National Health Service England/Improvement) Keyworker Project, and I have just accepted a role with the NHSE MH (mental health) Team as their first autistic advisor.
I’ve broken ground and improved the lives and prospects of so many people like myself because those at Camp Mohawk believed in me and saw my potential, as they do with every child.
I am Conor. Autism and my conditions do not define nor limit me anymore. The world is mine to improve. Thank you, Camp Mohawk, for believing in me.
Leo
I first made a phone call to Kate following the first lockdown after hearing so many positive things about Camp Mohawk. Looking back I now realise at the time of that phone call how low we were as a family and how Camp Mohawk was literally a lifeline for us. 2020 was a year we will all never forget. It was also a year we saw our bubbly, chatty, sociable little boy who had just turned two developed life changing needs.
Leo is autistic and suffers severe sensory overloads which causes the most distressing meltdowns for him. These are heart breaking for us to see, I don’t think there will ever be a time it will get easier for us to witness. In the first year of Leo’s life, Leo & I explored all of the local attractions which were on offer for babies & toddlers. I was the mum finding all of the new places and recommending them to all of my mummy friends. I was the mum who hosted coffee mornings, who had play dates everyday & Leo’s social calendar was better than mine ever was. I met a wonderful group of mummy friends along the way. We always had so much in common due to sharing the same first time mum journey with our children all born within weeks of each other.
At 18 months Leo regressed in his speech, he lost all communication and social skills (some of which hadn’t developed) and suffered severe, frequent meltdowns throughout the day which coincided with the first lockdown. One of the only things getting most people through the bleak & very dark days of the pandemic was the opportunity to leave their houses for their daily exercise. We could not go for a walk with Leo as he would try to run into the road & refuse to walk, we couldn’t put Leo in his buggy as he’d try to tip it over and hated being restrained and we didn’t realise at the time he was struggling with a sensory overload.
When the parks re-opened I would drive from park to park to find one that Leo felt comfortable to explore but he would get so distressed at the very sight of them and refuse to get out of the car inconsolable. I would have to drive home often with tears in my eyes feeling defeated despite knowing I had listened to his needs and I had done the very best thing for him. We felt so grateful to have a garden during the pandemic but unfortunately there was something that distresses Leo in the garden and he would refuse to step foot outside. It could be colour of the fence, the neighbours towering trees blowing in the wind, the plants, even transitioning from outside in and vice versa, we tried so hard to work out what it could be and reassure him with no avail.
Leo has a genetic overgrowth condition and at 2 years old he is wearing age 6-8 clothing. Leo’s size mixed with his frequent meltdowns makes it impossible and dangerous for me to take him anywhere on my own. I felt worlds away from the first year of our life together and incredibly lonely and isolated. We had no idea how to navigate through this new life and felt like prisoners in our home, I’m sure Leo felt this too. It was at this breaking point I called Kate and booked us in for our first visit at Camp Mohawk. I had said to Kate that there was every chance we could arrive and would have to leave before we could get out the car something both my husband and I were convinced would happen. Kate and Matt along with every member of staff made us instantly feel part of the Camp Mohawk family, they greeted us with support & kindness & any pressure we put on ourselves (which we feel at any outing) disappeared. They reassured us and they understood even opening the car door and stepping outside was an achievement, which it really was.
When we arrived Leo stepped out of the car he ran over to the amazing camp fire with a big smile on his face. He instantly felt so at home and so did we. We had a fantastic first visit running through the woodlands making dens, sitting by the fire and exploring the Pirate ship. At the end of this visit like most outings I burst into tears when I got back in the car but this time with happy tears.
Camp Mohawk is the most magical place and makes the impossible possible for us. We have visited in wind, rain, sun and snow and I’d be lying if I said every visit is perfect as Leo’s challenges are still here but we feel so relaxed knowing he is safe to run (and he is a runner!) there is never any judgement and always a helping hand to support us. There really is something for everyone from the sensory room, to the music room, soft play to the swimming pool- this really is the place dreams are made of. I have a million photos of our beautiful, smiley happy little boy at his favourite place so it’s so hard to pick a few. I think it’s clear to see how much he enjoys himself. Sadly we, much like many parents of SEND children face a lifetime of isolation. We are so grateful to have friends & family who have supported us and always support us through this journey. I would have given up on me a long time ago as we hid ourselves away, politely declined playdates and park visits (if only you knew how much I wished I could have said yes).
Camp Mohawk has given us the confidence to keep trying & has also allowed Leo to just be Leo- and Leo is the most incredible little boy. We have also met some amazing families and have felt an instant bond with so many as we are in our own elite club. Yes, life is different to what we expected but we have come on so much as family and looking back to where we are now life is great. I am still the mum finding all the best places to go but to meet Leo’s need now. Thank you Camp Mohawk for being our happy place and providing a safe, fun environment for us.
Toby & Family
Toby contracted meningitis not long after birth and now has cerebral palsy, cortical vision
impairment, hearing impairment and epilepsy. He uses a wheelchair and does not
communicate verbally. Toby goes to a school where he has 1:1 care.
Mum Nikki has been bringing Toby to Camp Mohawk since he was very young. “Even
when Netta was a baby we could still come because it’s safe here. It’s difficult to predict
what Toby will enjoy when he comes to Camp Mohawk because it varies but today, he’s
really enjoying the wheelchair swing. He does love the sensory rooms – the bubble wall
and tubes are his favourite things. We’ve spent hours in there!”
Toby is usually cared for by his parents at Camp Mohawk but the “others go off happily
with the staff here. Gives them the chance to play with other children.”
“This is a very special, probably unique, place. The staff really try and think of everything
like the wheelchair cut out at the picnic tables and the rubber pathways. They make all
the difference. We come as often as we can get a place”
“Davina is another mum whose family are registered with Camp Mohawk. We are
friends and we try and bring our families on the same days. The kids have grown up
together here.”
“Swimming is really great for Toby. It’s the only exercise he can do and it’s warm so he
can stay in for a while. Having said that the facilities by the pool are impossible. As Toby
is heavier now, we really need a hoist to get him in and out – though the staff help me at
the moment. And when Toby comes out of the pool, he needs changing immediately so
he doesn’t get cold and it’s a long way to push him up to the shower
in the main building.”
George & Family
Davina has been coming to Camp Mohawk since George was around 3 years old.
George has complex health challenges including a midline brain abnormality, a sodium
regulation disorder and epilepsy. These challenges mean George does not speak and,
although he can use Makaton to communicate some needs he finds communication very
difficult and frustrating. He is unsteady on his feet and needs assistance to move around
safely. His behaviour is unpredictable, he becomes distressed in enclosed spaces or by
sudden noises or movement and can bite or punch other people.
George needs 1:1 attention at all times and as a consequence, it is very difficult for the
family to take part in any mainstream activities. He attends a special school with a
holiday club one day/week but other organisations cannot take George because of his
1:1 care needs or the family live in the wrong county to be eligible for support. Other
centres for children with special needs are not suitable for, or do not accept, siblings
without special needs or have no support staff so the family cannot go out together.
Sometimes days out aren’t everyday for Davina and Family “Coming to Camp Mohawk is
sometimes our only day out together in the whole of half term. Otherwise we’re just at
home”
Davina has said this about Camp Mohawk:
George loves swimming in the summer. The water is so warm he can relax in there. He
can’t paint or do crafts indoors but he enjoys the sensory room with all the lights, And
the soft play room – he’s safe in there. He’s also been enjoying music with Jess – she’s
been playing the ukulele with him and he was totally absorbed. What’s really special
about this place is the staff. They are so welcoming and friendly –
they make all the difference. George doesn’t like enclosed spaces or anywhere that is
small or crowded so being outdoors here is great for him.
Amelie and Harry love coming here, they feel safe here and have been able to become much more independent. They can’t have play dates or have other children home because George can bite or punch – I’m always having to look sideways to keep check – it’s exhausting. Here I can just open the car door and they can run off and play independently and meet other children, the staff are here to help me keep an eye on them and George.
Harry says – I like the swings and the indoors and the animal days best. There are nice
people here and you can make friends really easily.