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Rachel Adam-Smith
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Francesca Lily - developmental delay, no speech, disability, makaton, special needs, medical needs -
Francesca Lily - developmental delay, no speech, disability, makaton, special needs, medical needs -

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This is the first time my daughter has been a patient at Leeds for over two years. Yesterday, we had a planned visit. I was unaware whether there had been any positive changes for those with disabilities but hoped so, particularly, as I have volunteered for the last two years, trying to make a difference. From my perspective not a lot has changed and it makes me question whether my efforts are worth it, is anyone actually listening?

On arrival once again, nowhere to park for a disabled badge holder. Several disabled spaces taken up with a piece of machinery. We drove around eventually finding a space we could park in for four hours, knowing at some point, I was going to have to return to the car and move it to another space. I had emailed ahead to see if I could get a permit for the admission. I asked when on the ward only to be told no. I had thought this was an issue that had been acknowledged and resolved. I wonder if anyone actually thinks about the difficulties in caring for a disabled child and the issue surrounding the ability to return to the car to move it. In addition, there is the issue of not having a space nearby for easy transfer for when you leave the hospital. I will return to this subject shortly.

I had spoken in advance to a play leader regarding my daughters disability and I was told the staff would be aware of her needs and a play specialist could come along, nobody mentioned a play specialist for the entire time we were there. My daughter cannot speak. She uses makaton sign language. I have been volunteering for over two years to try to persuade the hospital to train staff in makaton, to sign simple phrases such as 'my name is' and be able to understand yes and no. Clearly, staff are not using makaton. There were no introductions by nurses. No 'hello my name is, I had to ask the nurses their names.' The hospital appears to lack the interest to ensure all patients have the ability to communicate their needs or to introduce themselves to those with communication issues. Lack of training and ignorance perhaps about the needs of the person they are caring for. Disabled children do have feelings, can feel pain and have the ability to think.

Unfortunately, no one ever asked me about her communication needs. What would the hospital do, if there was no one present in an emergency to communicate with a child with a learning disability? How would they understand the child's needs? My daughter is not a minority, there are many children with communication issues and the hospitals should be ensuring reasonable adjustments for all. Just because she cannot speak does not mean she cannot understand.

I felt myself having to explain several times why she couldn't have a plaster (due to sensory issues) or again why the identity bracelets could not go on (due to sensory issues). I thought my daughter was meant to have a hospital passport but I never saw one. I was never asked about her communication needs, how she says yes or no. She is 15, I personally do not think the nurses account for this fact and address the young adult. Instead, they speak to me and not the patient. Hospitals need to learn how to communicate with those who have learning disabilities. She is her own person and should have her own voice, I cannot always be her voice.

We were not told simple things such as where we could get a cup of tea, it was not until 6.30 pm, six and a half hours after admission we were told where we could get a cup of tea - but the staff told me 'you would not normally be able to bring a hot drink onto the ward'. Are parents with disabled children never meant to get a cup of tea or loo break? On this occasion I had paid for a carer, as too many bad experiences in the past, have left me with zero assistance. Previously, I have been left for eight hours trying to calm a severely disabled child with no offer of help for the entire time, to simply go to the toilet. I had hoped things had improved.

The clock is ticking on my parking, we checked in at 12, it was just after 3 and I was waiting for my daughter to go to theatre. I could not leave her. The porter came for my daughter and we were waiting in theatre at 3.15. By the time my daughter was asleep I had five minutes to make the mad dash to the other side of the hospital to move the car. Clarendon wing to Jubilee. As my daughter is going off to sleep for an operation, should I really be thinking about the parking ticket I am about to get? I am emotional and worried about her, parking should be the last thing on my mind. I end up parking at Martin Wing in a disabled space. I take the wheelchair out of the car for later on, anticipating my daughter will be made to leave before she's fully awake and functioning, she's too heavy to carry. I then realise the access to Jubilee Wing from this direction is stairs only. It seems bizarre to have disabled spaces but no actual disability access, with the help of the carer we carry the chair up the stairs.

When we are called to recovery at just before 6 pm, it is clear my daughter is deeply asleep. Around 6.30 we manage to get her to the ward. I am left to climb onto the bed and slide my daughter across onto the bed, managing not to crack my head on the tv or do myself or her an injury. Not sure why this has suddenly become a parents job. We are then told that she cannot sleep, we have to wake her up and keep her awake, as they close at 8. We put the TV on to try and wake her up. However, we are told this is turned off at 7. Trying desperately to wake my poor child, who wants to sleep off the GA and pre med, we have to instead continually wake her up and get her ready to leave literally an hour after coming out of recovery. I have had many GA's myself and there is no way I would have felt capable of leaving a hospital an hour after coming out of recovery, in addition I do not have special needs and a complex medical history unlike my daughter. I had seen the surgeon on leaving theatre, who said she would be admitted if she did not wake up sufficiently and he had already informed the relevant departments. However, this was never mentioned by the nurses nor considered. Next, the nurse was in to take out the cannula before establishing if she was drinking properly or had been to the toilet. She commented instead 'that she thought removing the cannula would wake her up,' perhaps because having witnessed her lying on the floor earlier on in the day when I struggled to get the pre med down her, she knew removing the cannula would cause her great anxiety and wake her up. I then asked a particular nurse if she would wait a few moments in the room whilst we got her PJ's on to assist (a sense of authority) she said she was too busy with other patients, however, the ward was empty apart from us.

My daughter had not eaten since 6.30 am. Prior to going to the hospital I asked about puréed food for her, she can only eat puréed food. They said they did not provide any, as they were only a day ward and for health and safety reasons, they were not allowed to use a microwave. However, this did not matter in the end, as we were made to leave before 8. It's fortunate we only live 30 minutes away but what about children who live further afield? Children that have no ability due to their disability of feeding themselves in the car, or clearing up their blood or getting a drink ? What's happened to waking up and a nurse offering a drink and a piece of toast? I know my mum was offered tea and toast after a recent admission, so why are children kicked out of hospital an hour after a GA without ensuring they are fully functioning? Where has the care gone? Or is it just children with disabilities who cannot actually say how they feel? Not once did anyone ask my daughter or me about how she was feeling, there was no 'mum how do you think she's feeling?'

Luckily, I had a carer on this occasion. On the way home, my daughters blood was pooling in her mouth and running out. She has issues with choking. She cannot spit and probably did not understand why blood was in her mouth. I could not drive and care for her at the same time. I had been given swabs but how can you swab your child's mouth and stem the blood if you are driving? I am a single parent, the hospital do not think who is going to care for a disabled child on the journey home. Disabled children should not be rushed home, they can take far longer to do the most simple tasks in everyday life, yet we expect them to be up and out of the ward in an instant following surgery?!

Whilst I do not wish to have to stay in hospital, I think discharging a child an hour after they have returned from recovery when they can hardly stand up, have not been to the toilet, had a proper drink or eaten is illustrating a lack of concern and care, particularly for those with additional needs. Those with disabilities should be on the morning list to ensure sufficient time to recover. The hospitals attitude towards disability does not appear to have improved. The surgeons and consultants were excellent, it is the ward care that still appears to be an issue for those with special needs and there needs to be an urgent change to ensure reasonable adjustments for those patients with disabilities.

"Don't let her sleep, we are closing at 8", borderline cruel for anyone to be told they cannot have a sleep after a GA. You could liken the care to a restaurant that was closing, turning the lights out and feeling uncomfortable still sitting at the table.


Photos following surgery. In her chair hardly able to keep her eyes open.
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10/27/17
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https://www.facebook.com/somewherespecialuk please share and like my Facebook page - making a difference for people with disabilities. Thank you
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Treatment of Francesca over two years at NHS Leeds Hospital

The most recent comments relating to my daughter when needing investigation or treatment in the hospital setting

- 'On a level of 1 -3, what is her pain'. 'she does not understand' 'ok, we will just put it down as a 1'
- 'we tend to leave these things with special needs children and wait and see' this was on admittance to hospital when they thought she might have been having fits.
- 'how long is her life expectancy' this was in front of Francesca
- As the nurse was about to take blood from my daughter 'does she bite'?
- 'We cannot take any of her teeth out, as it would involve a GA and we don't like to give those to children with special needs', 'they will fall out naturally when she eats', 'but she does not eat solid food and has no ability to pull them out herself, she is also getting picked on for having two rows of teeth', 'sorry, we just do not do it for children with special needs'. This took me two years to achieve and only happened as the final nurse we saw had a sister with an LD.
- Not once have I ever met a nurse or doctor in 12 years of going to hospital that can use sign language or even knows 'yes or no' these key signs would help so many children. I might not always be able to be with Francesca straight away and I find it truly shocking that there is a total lack of makaton sign language taught and used in hospitals and that the hospitals can be so ignorant to those children whose communication is through sign language.
- Can my daughter have something to eat we have been here 7 hours plus 'sorry, we only have sandwiches' she does not eat solid food, 'sorry there is nothing else' either that was through lack of effort or the truth either way my daughter is entitled to a meal in hospital, this continued for the week we were in hospital.
- Look at the other children, they are all crying, she is not in pain as she is not crying - said by SHO 
- anxiety fear of flying - 'we do not give children with special needs any drugs to calm them, they are making life choices! we tend to talk about these things. 'She cannot talk, so how do you intend to do that? ' we will refer to LD team. 'LD nurse: my suggestion is to not go to hospital so often and wherever possible speak to the consultant on the telephone instead' and 'portray yourself as a strong robust woman and create a new identity for yourself to show your daughter what a strong woman looks like, in other words, we don't bother treating children with LD for anxiety, they have special needs get used to it.
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I wrote this article three years ago, after another tricky visit to the playground with my daughter. When once again there was no accessible playground equipment. Three years on, I was walking past our local park, the sun was shining, children were playing and I thought, what about Francesca and the other disabled children who never have the opportunity to access and play in the playground as others do? Francesca is not tall, only 134 cm's but it is impossible for me to lift her now, therefore, she can not have the same ability to be included and access a simple pleasure for many children and parents, further restricting her life and inclusion in society. Due to her developmental issues, she would still as a teenager derive so much pleasure from a playground, which in turn would assist in her physiotherapy goals and wellbeing. I live in a village with two special schools and a children's hospice. Francesca is not a minority, there should be a playground for everyone to access and nobody should have to drive twenty plus minutes from their home to find one (if one exists).
Accessible Playgrounds?

This Sunday the sun is shining and Francesca and I go to the local garden centre to see the fish. Opposite is a very nice modern playground. Francesca signed that she wanted to go on the swings. So we walked across and on a beautiful day, it was quite busy. Francesca has poor co ordination and muscle tone, so needs to go on a swing with support. The only swings suitable are the baby swings, only two in the park, quite embarrassing for an 11 year old to have to go on a baby swing. The other issue with going on a normal swing is that Francesca signs to communicate, so saying she has finished or wants to communicate about anything else, means that she needs to use her hands, impossible, if you have to concentrate on holding onto the swing!! Trying to get an 11 year old (Francesca is the size of a 7 year old) into a baby swing, is a very difficult challenge, Francesca is very patient but some children lack the understanding or will have challenging behaviour making this an impossible task. It is difficult enough for myself with my heart conditon, lifting her into the swing and I dread the day she gets stuck!!! Francesca then wanted to go down the slide, the picture below shows the challenge Francesca and I have to now go through to access the slides, all the slides are accessed by climbing up and through the boat. We have to pick the right moment when other children are not barging past or treading on us and slowly Francesca climbs the steps with my support. When at the top of the steps she has then to negotiate getting her head underneath the bar. At this moment I hear a toddler shout to his mum, 'come on mum, climb the wall' to which the 'mum replies ... no, its only for children'. I have no choice but to go onto this climbing 'boat' with Francesca, there is no way she could manage to climb, negotiate going under and over bars without getting pushed over by eager and excited children. Up and over I go over the various bars, whilst trying to ensure Francesca is getting up at the right point and down without cracking her head. I can feel people starting at me but what choice do I have? My daughter is desperate to go on the slide and enjoy the park as other children do but her body is not able to accomplish the task without adult support and even then it is extremely difficult to manage! She wants to be independent and be able to go without 'Mum' and she should be able to be safe and access a park as all other children do!
Luckily I am able to help her but as I am her full time carer and single mum, I am then putting myself at risk of having an injury that would make me incapable of looking after her.  

Are parents of special needs children meant to say to their children at the weekend ' no sorry we cannot go out at the weekend, as society does not allow you to access the parks,!' These children have been given a difficult enough life, why are the parks not a priorty to ensure that those children with physical disabilties are able to enjoy time with their parents, become independant, make friends and feel happy and good about themselves! Seriously how difficult would it be to consider all children who are desperate to play!'

You should of seen Francesca's face going up and down the slide. She was so very patient and she insisted on doing it three times, which meant mummy doing it three times, I am sure she wanted to do it more but it was so tiring for someone with such disabilities!  I will return to the park next week and video this, to show you how difficult it was for Francesca and for me to achieve a simple enjoyment in life of going down the slide!!

It really is about time that all children are considered when planning a playground, it is about time children with disabilities were accepted into the playground setting!! Accessibility for ALL children, the parks should be a place to play with parents, siblings or friends and a place to make memories or ALL!
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 EQUAL OPPORTUNITY TO EAT OUT!

Every weekend, I read facebook posts or hear from friends who have enjoyed lunch, dinner or just a snack out. Taking their families to different cafes and restaurants and enjoying time out together having a meal. Before they leave I doubt they think twice as to whether they will be able to eat in the restaurants. They probably discuss venues and what everyone would like to eat ‘italian, pub grub or Mexican’ and mutually agree. For me and my daughter eating out whether just in a café or a restaurant/pub is virtually impossible. My daughter has a complex eating disorder. Francesca has spent years gastrostomy fed and fighting for her life in Great Ormond Street Hospital, now recovered from most of her medical illnesses and minus the gastrostomy, she cannot eat solid food. She is still unable to talk at 12 years old and her food has to be pureed down, to enable her to eat her food. She can choke on lumps. She loves her food though and really enjoys different tastes. She will sit quite happily finishing her whole dish and then asking for pudding, for her she probably appreciates the fact that she could not eat for many years and so really enjoys her food and choosing what she wants to eat. Despite this, every time we go to a restaurant and ask for food to be liquidised down, they refuse to do so. It is not difficult or costly to have a hand held blender, which I am sure many restaurants have to chop down herbs etc but there is a complete lack of understanding and unwillingness to do so. It is not hugely time consuming, if the restaurants are worried about liability for leaving a lump in the food, perhaps we could sign a form to say we have checked the food, in this health and safety conscious world we now live in, this would probably be necessary. I am amazed that as more children and adults are living with long term disability and neurological conditions which mean that they cannot chew food or swallow lumps, surely restaurants/cafes could have more understanding and more compassion. My daughter’s disability is restrictive enough and this unwillingness by many restaurants to understand and let my daughter have the same choices is unfair. Francesca loves her food and should be able to choose from the menu and we as a family should be able to go out as any other family do, we should not feel embarrassed or have to ring up beforehand to see whether any food can be liquidised. We don’t eat out often but it would be lovely to think we could go out for the afternoon and pop into a pub or restaurant and be confident that my daughter would be able to eat. My daughter should be able to experience a restaurant as everyone else does and experience different food. I ask restaurants to please consider all customers as valued.
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Accessible Playgrounds?

This Sunday the sun is shining and Francesca and I go to the local garden centre to see the fish. Opposite is a very nice modern playground. Francesca signed that she wanted to go on the swings. So we walked across and on a beautiful day, it was quite busy. Francesca has poor co ordination and muscle tone, so needs to go on a swing with support. The only swings suitable are the baby swings, only two in the park, quite embarrassing for an 11 year old to have to go on a baby swing. The other issue with going on a normal swing is that Francesca signs to communicate, so saying she has finished or wants to communicate about anything else, means that she needs to use her hands, impossible, if you have to concentrate on holding onto the swing!! Trying to get an 11 year old (Francesca is the size of a 7 year old) into a baby swing, is a very difficult challenge, Francesca is very patient but some children lack the understanding or will have challenging behaviour making this an impossible task. It is difficult enough for myself with my heart conditon, lifting her into the swing and I dread the day she gets stuck!!! Francesca then wanted to go down the slide, the picture below shows the challenge Francesca and I have to now go through to access the slides, all the slides are accessed by climbing up and through the boat. We have to pick the right moment when other children are not barging past or treading on us and slowly Francesca climbs the steps with my support. When at the top of the steps she has then to negotiate getting her head underneath the bar. At this moment I hear a toddler shout to his mum, 'come on mum, climb the wall' to which the 'mum replies ... no, its only for children'. I have no choice but to go onto this climbing 'boat' with Francesca, there is no way she could manage to climb, negotiate going under and over bars without getting pushed over by eager and excited children. Up and over I go over the various bars, whilst trying to ensure Francesca is getting up at the right point and down without cracking her head. I can feel people starting at me but what choice do I have? My daughter is desperate to go on the slide and enjoy the park as other children do but her body is not able to accomplish the task without adult support and even then it is extremely difficult to manage! She wants to be independent and be able to go without 'Mum' and she should be able to be safe and access a park as all other children do!
Luckily I am able to help her but as I am her full time carer and single mum, I am then putting myself at risk of having an injury that would make me incapable of looking after her.  

Are parents of special needs children meant to say to their children at the weekend ' no sorry we cannot go out at the weekend, as society does not allow you to access the parks,!' These children have been given a difficult enough life, why are the parks not a priorty to ensure that those children with physical disabilties are able to enjoy time with their parents, become independant, make friends and feel happy and good about themselves! Seriously how difficult would it be to consider all children who are desperate to play!'

You should of seen Francesca's face going up and down the slide. She was so very patient and she insisted on doing it three times, which meant mummy doing it three times, I am sure she wanted to do it more but it was so tiring for someone with such disabilities!  I will return to the park next week and video this, to show you how difficult it was for Francesca and for me to achieve a simple enjoyment in life of going down the slide!!

It really is about time that all children are considered when planning a playground, it is about time children with disabilities were accepted into the playground setting!! Accessibility for ALL children, the parks should be a place to play with parents, siblings or friends and a place to make memories or ALL!
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For your child to lack the ability to communicate does not mean that they lack the ability to understand or express emotion in other ways. Francesca has an inability to communicate but a high level of communicative intent. I am her mum with the ability to communicate for her but even I am not listened to. Recently I have felt so frustrated with the lack of understanding that I feel I should not even bother to speak for her because it is clear that Francesca expressing herself and her anxieties does not matter to those professionals that have known her for a short amount of time and know nothing about her, the way she expresses herself or her complex medical history. The general comments from those who have known her a few months or have not even met her is  "she will get used to it", "she is just playing you up". People who are not medical experts seemingly knowing best, what is right for your child, who they know so little about!  Limited choice of special needs schools gives this expectation that she should just go to the one they name, without any real understanding of the neurological disorder she keeps exhibiting and extreme anxiety since the transition has started. She has never refused to go to school, she is  11 but she is now refusing to go into the special school but will happily still go into mainstream. That is her communicating with me and expressing how she feels but this is ignored. Most mornings she now cries, hyperventilates, screams, refuses to go. She is terrified but I am just told she is playing me up. I have known her 11 years, I am her mum, who has cared for her when she nearly lost her life and through all the medical procedures for which there have been many and I know a terrified look ! She has been out of school for two weeks now and not done the "tic" movement once! Yet when she is placed back into this special school that she is clearly distressed in the tic starts again. It seems it does not matter if my daughters neurological state slips, the anxiety/stress she is under of the reduced ability to eat, mood change, hyperventilating or extreme tiredness. I am told that I will be in trouble if I do not take her to school, what part of she is deteriorating, she is clearly distressed do they not understand!  It appears not to matter whether her health is deteriorating. They state there is nothing wrong with her!  She has an  inability to communicate, this is the only way she can express her emotion but it is ignored. Why? Because the LEA do not care? Because they do not want to fund anything more specialist? Because of a lack of training? Because they clearly believe they are the experts in all genetic syndromes whose lives have been saved more recently due to medical intervention and progression? Clearly they must be the latter!  I wonder why Heads of Schools and the case officers are not rung up constantly  by medical professors asking for their medical research and findings into these rare genetic conditions that they seem to be medical experts in?! 
My daughter is not a nuisance in the class/school, yes she has special needs which are unique and has complex medical needs but she is extremely sociable and happy. I agree, she needs specialist help but she also has the right to mix with children in her village, to make friends and bonds with children who will be part of her life as she grows and become  friends into adulthood. For Francesca to be a familiar face to everyone and to be able to be understood and be helped if needed. How will she ever be able to be understood, if we do not have inclusion in society, enabling those less fortunate to have some form of independence? The children at the mainstream school have benefited from having Francesca in their class, an understanding that we are not all the same, yet, Francesca is now expected to have those inclusion doors shut on her, to go into an environment that to her is clearly frightening. I was told recently by the case officer "why not just have a party at the current school and say goodbye! What type of attitude is that? Why should children who benefit from social interaction, be made to be cut off from inclusion when at special school? For no reason other than - effort, cost, lack of understanding, lack of willingness for inclusion? Why should Francesca only have special needs friends?  "Get used to it they say" is that the attitude with all people with special needs, accept it! Would you say that to someone who is being bullied? or someone who cannot cope with the work environment? I am really scared for my daughters future,  when I an no longer here for her, when there is no voice for her, when she is expected to be segregated from society and "put up" with things that clearly cause her upset and distress. When no one listens or cares. It seems to me it is the easiest and cheapest option possible regardless of what "symptoms" my daughter exhibits.  
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Accessible Playgrounds?

This Sunday the sun is shining and Francesca and I go to the local garden centre to see the fish, opposite is a very nice modern playground. Francesca signed that she wanted to go on the swings. On a beautiful day, it was quite busy. Francesca has poor co ordination and muscle tone and needs to go on a swing with support. The only swings suitable are the baby swings, only two in the park, quite embarrassing for an 11 year old to have to go on a baby swing. The other issue with going on a normal swing is that Francesca signs to communicate, therefore, saying she has finished or wants to communicate about anything else, means that she needs to use her hands, impossible, if you have to concentrate on holding onto the swing. Trying to get an 11 year old (Francesca is the size of a 7 year old) into a baby swing, is a very difficult challenge, Francesca is very patient but some children lack the understanding or will have challenging behaviour making this an impossible task. It is difficult enough for myself with my heart conditon, lifting her into the swing and I dread the day she gets stuck. Francesca then wanted to go down the slide, the picture below shows the challenge Francesca and I have to now go through to access the slides, all the slides are accessed by climbing up and through the boat. We have to pick the right moment when other children are not barging past or treading on us and slowly Francesca climbs the steps with my support. When at the top of the steps she has then to negotiate getting her head underneath the bar. At this moment I hear a toddler shout to his mum, 'come on mum, climb the wall' to which the 'mum replies ... no, its only for children', whilst staring at me. I have no choice but to go onto this climbing 'boat' with Francesca, there is no way she could manage to climb, negotiate going under and over bars without getting pushed over by eager and excited children. Up and over I go over the various bars, whilst trying to ensure Francesca is getting up at the right point and down without cracking her head. I can feel people staring at me but what choice do I have? My daughter is desperate to go on the slide and enjoy the park as other children do but her body is not able to accomplish the task without adult support and even then it is extremely difficult to manage. She wants to be independent and be able to go without 'Mum' and she should be able to be safe and access a park as all other children do.
Luckily, I am able to help her but as I am her full time carer and single mum, I am then putting myself at risk of having an injury that would make me incapable of looking after her.  

Are parents of special needs children meant to say to their children at the weekend "no sorry we cannot go out at the weekend, as society does not allow you to access the parks". Children with disabilities have been given a difficult enough life, why are the parks not a priorty to ensure that those children with physical disabilties are able to enjoy time with their parents, works towards independence, make friends and feel happy and good about themselves. Seriously, how difficult would it be to consider all children who are desperate to play.

You should of seen Francesca's face going up and down the slide. She was so very patient and she insisted on doing it three times, which meant mummy doing it three times, I am sure she wanted to do it more but it was so tiring for someone with such disabilities.

It really is about time that all children are considered when planning a playground, it is about time children with disabilities were accepted into the playground setting!! Accessibility for ALL children, the parks should be a place to play with parents, siblings or friends and a place to make memories or ALL!
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My daughter is unable to speak at the age of 11. This is my thoughts on what it feels like for her and are every day frustrations
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