December 20, 2013

Parent’s speeches from the 2013 AGM

Connie’s Speech:

My name is Connie, and my daughter Aalaeya is 2 and a half and has been attending the
Watford AM group for about a year and a half.

Aalaeya has an undiagnosed condition, which exhibits symptoms such as tremors, or ataxic
movements, hypotonia (low muscle tone particularly in the core), and a visual impairment.
She is globally developmentally delayed by about a year, and is not yet able to walk or
speak. She was recently certificated as partially sighted, although the doctors are not
certain regarding what level she can see at.

I first came across playskill when doing one of the numerous google searches I have
conducted in the 2 years since we found out that Aalaeya had a special need. Aalaeya was
just under 1 at this time, and had already had her first round of tests at Great Ormond Street,
including a lumbar puncture, MRI and blood tests, all with no key results to indicate what her
problem was.

We have 3 older daughters, all of whom developed ‘normally’, and Aalaeyas issues were
very new and extremely frightening for us; especially as the doctors couldn’t tell us what was
wrong with her. No other professionals apart from the doctors and a physiotherapist had
been assigned to Aalaeya, and we had no information on any local services designed for
her. Finding the Playskill website was like a ray of hope for us – a playgroup, in Watford,
for children with physical disabilities, run by professional physios, speech and language and
OT’s? Why had I not come across this on the Herts Direct special needs pages?

When we came for our assessment and met Andrea and the rest of the team it was an
immense relief to find people that weren’t phased by Aalaeyas delays, who were not only
used to children with difficulties with similarities to Aalaeya, but who could tell me that with
work she could be helped to develop!

When Aalaeya first came to playskill, she had no words, was not steady on her legs, had
extremely poor balance, and very poor hand and eye coordination. She started in the am
group, and that’s really when things started to turn around for us.

Apart from the support from the professionals in the team, around movement and mobility,
fine motor skills, self –feeding, sensory issues and speech, what me personally as a mother
has found the most helpful is the wealth of knowledge from the staff and the other mothers.

Finding a network of parents who understand how difficult, how scary, how depressing it
is at times to have a child with additional needs. Who understand why when you see your
friends children who are at times younger than yours developing normally it breaks your
heart – not because you wish any negativity towards the child, but because you see what a
long road your child has to travel, and that his or her destination may never be in line with
other children their age. Through playskill I found out about things such as Opportunity
class (local authority run playgroups for children with special needs), Resources, how to get
equipment for Aalaeya such as her walkers and her chair.

The parent training I have attended such as speech and language and Maketon, has helped
Aalaeya now have about 10 words, a number that is growing every day, at a time when
the NHS speech and language refused to give her therapy, saying that her speech delays
were in line with her other delays and therefore not worth treating. The target setting they do
for the children helps us as parents see how far our children have come in small steps, as
sometimes as parents we think because we can’t see big changes, that the children aren’t

Aalaeya is now pulling herself to stand with support, and a couple of weeks ago took 1 step
here at playskill. She can sit without falling, is much more sociable and her development
has come on in so many other ways. Playskill have been supportive in regards to our
statementing application, and with Aalayeas move to attending nursery and conductive
education. We are hoping that that Aalaeya can continue to grow with playskill, and I will
start to bribe Andrea within the next few weeks to hopefully ensure Aalaeya has a place here
for the new term – whats your price Andrea?!

I must take this time to apologise to some of the other mums, they wrote some comments
about playskill for me to add to my talk, and I put the piece of paper away for safekeeping,
and now can’t for the life of me remember where I put it! So much for safekeeping…….

However I think I speak for all of us when I say that the support we get here from the staff
and each other, being able to ask any questions and get the answers or be directed to where
we can get the answers, being able to have a cup of tea and a cry if we need to, finding
out about support, networks and so much knowledge is invaluable. Our children having a
familiar place for to go, where the staff and volunteers understand their needs without us
having to explain them 20 times is invaluable. The developmental opportunities and access
to quality therapy in a purpose built environment is invaluable.

I would like to thank Playskill, the staff, the volunteers who are brilliant, and a big, big
thanks to the trustees. If we were to put a price on the work that Playskill does I probably
couldn’t afford it, so what you do, for our children, for their siblings, for us as parents is so,

so appreciated.

I think that’s all I can say without bursting into tears, so I would like you all to join me in a

round of applause for all the staff, volunteers and trustees, to show our appreciation.

Sanja’s Speech

Good evening everyone

For those of you that don’t know me, my name is Sanja.

First of all just to let you know that I’m really not very good at this public speaking business! I’m very nervous and if you see me getting red in the face, hands shaking or crying, I apologise in advance as later I’ll probably forget!

Anyway, I’m a mum of 2 gorgeous little boys, James who is 6.5 and Thomas who is 4.5 and has Down’s Syndrome.

When Thomas was born it was a complete shock! Of all the things I was worried about throughout my pregnancy, Down’s syndrome wasn’t one of them.

The minute Thomas was born I knew straight away that he has Down’s syndrome. My body went into a shock and I couldn’t stop shaking for over an hour. It really felt like it was happening to someone else and was going to wake up from this nightmare and it won’t be true. Of course it didn’t!!

We stayed in hospital for 3 days and every time someone walked into out room and even said Hello I started crying. I had quite basic knowledge of Down’s syndrome, I knew about facial features and general delay, but that was about it.

I was given a magazine about Down’s syndrome and after reading all of it, I cried even more!

There was lots of information about problems kids with Downs can have, health issues, learning difficulties and so on.

I started worrying even more what kind of future my sone will have, not immediate but my mind jumped about 20 years ahead, and who is going to look after him when I’m gone (as I was already an older mother).

I was very keen to meet other parents of children with Downs, so we we’re put in touch with a local Downs support group and one of the parents came to see us in the hospital. She was very positive and told us all about her son and showed us lots of pictures.

After speaking to her I felt much more positive and happy and was finally ready to go home.

I was on the mission to read and learn about Down’s syndrome as much as possible and to find out how I can help my son to achieve his full potential, whatever that may be.

I learned that early intervention is hugely important so when my health visitor told me about Playskill I was very excited, but I was also a bit sceptical as I didn’t know anything about it, so I asked some of my friends in Watford (on good old Facebook) and the response I got was amazing. They all said how fantastic Playskill is and to go for it, so I got in touch with Andrea.

When we first came to our assessment, it looked like a very organised chaos but everyone was very friendly and welcoming.

I had a great feeling about it and thought, wow, what a great place this is, I felt very comfortable. I was amazed that my son will be able to see different health professions (speech, physio, OT) all in one place at the same time every week, no need for different appointments or waiting 6 weeks for the next physio appointment.

It was also great meeting other parents and to me it felt like we were all in the same boat even if our children had different disabilities and I was able to talk to them comfortably and to and share our stories and our ups and downs. Many of those parents have now become very good friends.

These sessions became the highlight or our week and I was really looking forward to coming to Playskill, seeing other parents and children and wonderful, committed, professional Playskill team.

As these are weekly sessions Andrea and her team really got to know and understand my son and his needs and therefore are able to set his targets that are realistic and achievable.

My son really doesn’t like hard work and would rather sit on a sofa, watching TV and eating a sandwich!

He has very poor muscle tone and finds certain tasks quite difficult, but at Playskill he doesn’t get away with anything and is made to work.

When he sees Andrea coming towards him, now that he can walk, he tries to run away as I’m sure he know he will have to do something, he doesn’t want to, but for his own good, Andrea and her team keep on pushing him, which has paid off and as a result he can now do things that I’m sure it would have taken him much longer if it wasn’t for the weekly input from Playskill team.

Since coming to Playskill I definitely feel I have learned much more how to help my son in his development through various training evening and talks from other guest professionas.

I know if I have any concerns about my son I can ask Andrea and her team for an advice and if they aren’t able to help, they will point me in the right direction.

I always come away from each session feeling that I have learned something new.

Since coming to Playskill my son has learned to walk, use Makaton sign language, started saying few words, is learning to feed himself, slowly dress and undress himself and has done amazingly well.

So not only we get help and support at our regular sessions, Playskill also organise training evenings, fantastic days out and let’s not forget brilliant social evening.

I would like to say a HUGE Thank You to Andrea and her amazing and dedicated team of staff and volunteers, Tanya, Cedric, all the Trustees and anyone else involved with this fantastic charity who have helped so many children and parents.

Thank you!!

Rebecca S Speech

This is a picture of Amber who was born with a unique duplication of chromosome 11, which presents in Amber with low muscle tone and developmental delay. She will be 3 at Christmas. She will smile for the camera and will smile all the way to Playskill and all the way home. She loves going to Playskill, but will not admit it to anyone. To make sure no one discovers her secret, she attends class each week with a frown reserved just for her time there.

Each term, dedicated staff set individual targets for each of the children, which they believe are achievable with practice and hard work, and I’m pleased to say that this week, Amber finally achieved her target of pulling to standing. Andrea went to great lengths to help Amber achieve this, even resorting to decorating chairs in balloons to try and encourage her to stand. It makes us so happy to go into her bedroom and find her standing up in her cot in the morning.

I have always felt that with time and the right therapy, Amber will get there. I wanted to share a story that Penny, another mum from playskill, had read in a “Unique” magazine, which is a charity for rare genetic conditions. It was an article written by a mum whose child was born with a rare genetic condition. She had been told when her daughter was born, that she would probably never walk or talk and not to expect too much from her. She now wanted to share with everyone that her daughter had just started at University and was very proud of her. She pointed out that whilst most children who want to get from A to B use the motorway, her daughter had always got from A to B, using the B roads, which may take longer, but is far more rewarding.

This is how I feel about Amber, and many children at Playskill. With the help of all the wonderful staff, our children will all reach their full potential, and do things that bring a smile to our face every day. We feel blessed to have Amber and appreciate every little step forward she takes to becoming independent that most people take for granted.

Thank you Playskill!

Natalie N Speech

I was really nervous about standing up here today, what would I say, what if I get something wrong? Then I thought abSpeech

gorgeous little girl liberty and all of the other gorgeous children at playskill. That reminded me, that talking tonight isn’t about me or us, it’s about expressing our thanks for all the wonderful things Playskill do for liberty and all her playskill friends.

Liberty attends a nursery full time and I work full time which has made it harder for me to make friends with people who are in the same situation as us. Playskill has enabled me to do just that. People to talk to, that don’t judge or look at you funny, people that just smile in a way that gives a sense of normality and understanding.

Having a child with additional needs can be scary and a big leap into the unknown. They say the world is a scary place and having liberty has definitely shown that, but at the same time it has also shown us to live life at a slower pace and enjoy every second. Liberty has given us the best gift in the world, a sense of pride, and I feel so lucky to be able to share that with you all, knowing that you all have the same feelings.

Our children don’t just walk, they WALK they don’t just crawl, they CRAWL. When Liberty does something new the sense of pride is amazing and I know that we all feel that about each other’s children at playskill. and what is amazing is that you know the staff feel it too.

Playskill has given me, my family and others that attend playskill a sense of normality and a huge sense of belonging that some of us never thought we would feel. There are so many amazing things that playskill does, the list is endless. The points below are just a few of the things that parents have fed back.

• The children are all treated as individuals

• They are all given 1:1 and each child is know by every member of staff

• They are looked after as if they were the staff’s own children, the care and attention is outstanding.

• The staff at playskill understand that the parents know there child best which helps to put us all at ease, even if they do have a wobble at snack time.

• It is fun and structured at the same time.

• The children all get plans for there individual needs which is something I have not experienced anywhere else.

• Staff are always on hand to give advice and support.

• There is amazing support given outside of playskill nights out to give us all a break, fantastic training to help us to get the best out of our little ones.

• The staff are great listeners and always make you feel at ease.

The playskill team go above and beyond, they are amazing. You get all you need under one roof.

Not only is playskill full of different therapies for our children but also therapy for the parents. It’s a place to share, meet new people in the same situation as you, and a place to watch our children grow, learn and develop. It is somewhere fun for them to learn a little bit of independence and for parents to learn that is it ok for them to have meltdowns and falls because we know it makes them stronger in the long run. It is also a place for us as parents to have wobbles too and help each other along the way. It isn’t just the children that learn at playskill but the whole family. Whether it be new makaton signs, physiotherapy techniques or new ways to help our little ones learn through play.

The joy on the staff faces and in their voices goes to show how much we all mean to them and a thank you just isn’t enough to let them know just how much we appreciate all that they do. Playskill isn’t just a group to go and play it is an extended part of all our families.

If I could ask for one thing it would be that playskill could be extended to support other families and enable them to be as lucky as us.

Speech by Emma B

Tonight I am representing the lovely Mums of the Watford Monday PM group. I am in the privileged/tragic minority of folk who is experiencing Playskill for the second time. My daughter, Eve, was born in 2007 and diagnosed with Down Syndrome 2 hours after her birth.
I scoured the internet looking for anything that could help her development and came across the Playskill website. Eve was given a place at 2 and a half and continued on and off until she started mainstream primary where she is making amazing progress. Last week she brought home her Star of the Week award for wonderful work in numeracy.

My son Joshua was born in 2011 & diagnosed with End Stage Renal Failure at 48 hours old. He received a kidney transplant in January this year but is behind in his development and it is he who currently attends the Playskill group.

So, we are back again therefore it really must be good. The main reasons why? As people previously have mentioned we get access to a physiotherapist, speech therapist and occupational therapist all in the same place & every week for at least a term. There is a huge amount of expertise in one room and with regular access to it. I don’t know where else this happens.

The staff really get to know our children and what motivates them. They set realistic targets which are achievable and you don’t feel like you are going to be get rid of if they do achieve. I spent most of Eve’s pre-school life exaggerating how badly she was doing to ensure we continued to get help.

There is amazing support. What was particularly meaningful for me was I could bring Amelia (middle child – previously unmentioned!) without worrying about the noise she was making & as she grew up she was included as part of the group. There was great support for our children for example, Eve’s key worker was a retired Educational Psychologist. Who better to assess her needs & capabilities. It is also a great place to meet other parents in a similar position, to swop stories & advice & be inspired (thank you Jo and Rosie!) and to eat cake.

When Eve left Playskill we were still very much part of the ‘Playskill Family’ & invited to the parties and days out. I didn’t realise how much a part until Joshua was born and diagnosed. Andrea kept in contact throughout the first awful weeks when we didn’t think Josh would survive and she was one of the few people who came to visit; completely unfazed by the terminal diagnosis. After his transplant we were told to expect great leaps in development; that Josh would make up for lost time. Nothing happened. I am truly grateful to GOSH for saving his life on countless occasions but he is a walking kidney to them. I went to Andrea for advice on how to help his development and we are thankful that Playskill agreed to let him attend for a term. He has made fantastic progress.

Thank you Andrea and thank you Playskill