Parent’s speeches from the 2012 AGM
For those that don’t know me, I am Julie and I have a little boy with hemiplegia. It’s a form of cp and affects the left side of his body.
I knew from early on that there was something not quite right with him but lots of people told me not to worry but I couldn’t help that nagging feeling and i guess that “mother instint” so took him to the doctors to get told that there was nothing wrong. I kept taking him back and on the fifth occasion I got so upset I demanded to be referred.
I will never forgot the day Milo got diagnosed, i was in a complete daze. I remember thinking how long I had waited to meet the right person to have a baby with and was devastated to be told my first child had a disability. I couldn’t help thinking that it was my fault, had I done something wrong during pregnancy, was i too old, I felt it was all my fault. I came away from the consultation knowing very little about his condition, they couldn’t give any definite details about his development as they had to take a “wait and see” approach. I didn’t know if he would walk to talk. It was hard as I just wanted to be told what i was dealing with, if his condition would be severe or mild later in life.
I did some research on the Internet, which was the worse thing I could have done, but I couldn’t take all the information in. I read a long list of associated problem for children with hemiplegia like abnormal mental development, behavioural problems, varying emotions like depression, significant delay in achieving developmental milestones, these plus the list of typical problems like motor difficulties, difficulty with balance like walking and standing, difficulties with gait, stiffness with muscles, muscle spasm, difficulties with speech, difficulties with feeding.
I wondered how I would cope, could I cope, I had to, he needed me. I felt so desperate and isolated, none of my friends understood, all their children were healthy. Some friends stopped speaking to me when they found out, I guess because they didn’t know what to say. Even my family didn’t understand. My mum, my mother-in-law and my sisters were supportive but they didn’t know how it felt, how could they. Craig didn’t want to talk about it. That was the lowest point in my life. I went into a depression and couldn’t figure out what to do. I stopped going out with Milo, I couldn’t bear looking at other children and comparing them to Milo. Why me, why Milo. That was the question that ran over and over in my head.
After about 2 months, I realised that me feeling sorry for myself wasn’t going to make Milo better or help him and decided to look at ways that would help. He started going to physio and ot but it was only every 2 weeks to a month with each session about 45 mins. I then came across Playskill while at a children’s centre and had such a good feeling about it. I completed the application as soon as I got home. I was so excited when he got a place and relieved that both me and him would get some much needed help.
I really didn’t know what to expect on my first day and was so overwhelmed by it all. How much dedication and passion Andrea and all the staff had about helping Milo and all the children there. I was determined to take on board all the advice given and to do as much at home as possible. I read that his brain was still immature and that the more work we could do while he was still young could benefit him greatly. I also met some wonderful mums who, like me, had a child with a disability. I remember feeling so very humble and saw how strong these other mums were. Even though our children had varying degrees of disability, it didn’t matter as we were all there for our children which gives such a special bond. I went home and talked for ages to Craig about it and couldn’t wait to go back, and it became the highlight of the week. I finally felt positive about Milo’s condition. I remember Craig saying how much I had changed in a few weeks since going to Playskill from being very lethargic and moody to having a bounce in my step, returning to the old me who was always so happy and carefree.
I look at Milo back then, he was 13 months, he was just sitting up but not crawling or weight bearing. I knew Andrea had a lot of experience with hemi children throughout her career in the nhs and it really helped talking to her and understanding the condition more. Andrea also told me that he would walk eventually which took a huge weight off my shoulders. No other health professional had been so positive, it was all “well, we will have to wait and see, we can’t be 100%.”
As the weeks went on, I gained such an insight about his disability and what exercises to do at home. I also saw Milo’s personality come out at some of the things he had to do, obviously he found it very challenging but everyone had such a way with him that he eventually did everything that was asked of him. Debbie, his key worker, has been brilliant, right from the start she got to grips with his little ways and managed him fantastically. I remember at the start, he would kick up such a fuss at snack time because I would leave with the other mums for a coffee break but Debbie would soon calm him down. As the weeks went on, he settled more quickly and eventually there was no fuss. If she ever retires from Playskill, I would employ her in an instant!!!!!!
Milo soon realised how to do what Andrea and Debbie asked of him, sometimes not so willingly but he always reaches his target every term. I didn’t think he would be able to do some of things he has achieved. I am certain that if Milo hasn’t gone to Playskill he wouldn’t be where he is today. It really isn’t an exaggeration when I say that Playskill has changed my life. I have taken away so much from the sessions, as well as the numerous talks I have been to, it has given me such a positive outlook and I don’t feel alone anymore. I have made lots of friends that I would have never met had it not been for Playskill. I admire all of you mums and have so much respect for you all.
I love all the social things that Playskill put on too which means that all of us mums can have a fun time without our little monkeys which we all need sometimes.
Milo has been going to Playskill for over 2 years now and has made such a remarkable improvement. I have had so many people that haven’t seen Milo in a while that know he has a disability tell me how much he has improved, especially with his walking and his balance. Even his physio has told me that his progress has been beyond what they had expected. I feel so grateful that Milo was able to be part of such a great charity and will always be thankful to you.
I feel so passionate about Playskill that I wanted to give something back, however small, so I ran a 10k. I planned to run a marathon next year but unfortunately I didn’t get in but I wont give up, I’ll keep trying. I will definitely run a half marathon instead all in aid of Playskill and hopefully will raise more money, I’ll keep you posted!!
Its been a rollercoster of a journey but I am so proud of Milo and what he has achieved, he is my little Miracle. I look at him now and he has such a determination that I so admire in him. I wouldn’t change him for the world and I feel so positive about his future and I know he will be just fine.
My name is Colette and I want to speak to you on behalf of all the parents and carers that attend the Playskill am group, especially Mary Rishworth (Jack’s Mum), who has supplied me with an essay of praise for Playskill which i have tried to incorporate into this speech.
I am a mum to James who is 20 montha old, he was diagnosed with Downs Syndrome at birth. It has been a very difficult first year of James’s life, coping with the diagnosis, recurrent illness and the delayed development. Prior to having James I had never met anyone with Downs Syndrome despite being a nurse, and I had very little experience with babies. It has been a very steep learning curve.
When I first heard about Playskill, I thought fantastic, some support for James’s development and some support to aid me to help him develop. Having speech and language therapy ,physiotherapy and occupational therapy on hand each week, allowed targets to be set for James using my input. The Playskill staff are very hands on and committed to helping your child achieve their targets. Gillian advised that using a metal tin would help James to learn to post objects as the sound would be his reward, which has proved to be very effective.
Playskill’s staff have a vast range of knowledge covering issues to support parents and your child, like funding, respite and social services. Allowing parents/carers during the Playskill sessions to have a tea break and a chat with other mums that are an invaluable source of information and support, everyone is so informative through their personal experience. It is so important for mums with a child with special needs to not feel alone, I am a lucky that my son has a common diagnosis which means I have an established group Up on Downs which can offer some support. Playskill is a lifeline to other mums who fall between these diagnoses, as they feel their child is accepted and supported, THROUGH the support of Playskill.
Playskill organisea educational opportunities to aid your child’s development, ie managing behaviour. Thanks to James doing messy play we have very messy mealtimes, and thanks to my managemant behaviour training, I have learnt ignore the bad behaviour. (Just need to get my mother-in-law to do the same!)
As a family we enjoy the many family outings organised by Playskill and Cedric. These allow parents in similar postions to have fun and socialise.
The toy libary is also available which allows us to borrow appropriate toys which aid our child’s development ie the button/switch its amazing how far a child will crawl to press that switch or if you’re Maria how far you will crawl for James’s kisses.
James along with all the children in the Playskill morning group have made amazing progress over the past year. I am so grateful to all the staff for their kindness, support and commitment to my son. I would highly recommend this charity to any mum who has a child with special needs and I would hope that they can expand their services to more, as there is a lack of this kind of intensive therapy.
In summary in the words of myself and Mary:
The name Playskill stands for:
we all love you & thank you
from all the mums & babies
Hello. For those of you who don’t know me, my name is Sarah and with my youngest daughter, Emily, attend the Playskill sessions held on Friday mornings in Hemel Hempstead.
I was quick to nominate myself as speaker for our group this year because I’ve had time to experience the true mission of Playskill and see some wonderful results, not just in my daughter, but in our group past and present.
Emily has Downs Syndrome, which is a genetic condition and is medically called Trisomy 21, this is because of the addition of an extra chromosome 21. This extra genetic material presents itself as a physical and learning disability. It means Emily has developmental delays in her gross and fine motor skills and will walk and talk later than her regular peers. She will require assistance with a lot of things throughout her life.
I first heard about Playskill from a friend who emailed me a link to their website and asked me would this help Emily? I wasn’t sure whether Emily fit the criteria but emailed and received a message back saying yes they would love to meet her when she was a little older and would be in touch. What a good friend.
We went along in Easter 2011 to a taster session with Emily then 11 months and her nearly 3 year old sibling Annabel and we were all given a warm and relaxed reception. It just happened to be the Hemel Easter party so there was chocolate galore; it was certainly a winner with Annabel! It was so lovely to go to a group and not have to explain why Emily wasn’t crawling yet, why she was so small and why her tongue is stuck out most of the time. Andrea and the staff were so friendly, as were the other parents at cake time… I felt the dark days of Emily’s first diagnosis lift, I felt “normal”.
I went home and raved about Playskill to my husband, Tim, who was so pleased that we had found this group. It is difficult for someone who doesn’t go to all the groups I go to and experience on a regular basis what it is like to have a child that is different, well for me anyway, I always feel like I have to explain her differences in some way. Tim can’t come to regular Playskill groups but he is always there to support me in what I do with them because he knows how important this charity is to us.
Playskill provides three therapies under one roof, life experience by the bucket load and general helpful advice and all this is open to everyone for the princely sum of a voluntary weekly contribution or a £5 lifetime membership, Wow. I have seen Emily and many now good friends’ children develop and achieve goals that may have taken longer to reach if we weren’t attending the regular sessions that Playskill organises. Emily had learnt to sign the letter of her name during the greeting and waving goodbye, towards the end of the first term, she had taken a step at 18 months – just one but it was very exciting, milestones Mummies like me desperately crave.
The workshops are extremely helpful, I have tried to attend as many as I can. You get to meet professionals that ordinarily you wouldn’t meet or know existed and at each workshop I have gained valuable and important information that may not be useful right now but will be worth knowing for the future.
The parties and days out are brilliant, good fun and wonderfully generous, both my girls have enjoyed them.
Lunches and evening meals organised by Cedric are a wonderful treat, a reminder that there are so many interesting and generous people I have met through Playskill and their desire to be involved with this Charity.
So thank you Playskill for all that you have done to help Emily and me and for including Annabel, she called it “Emily’s” group and I know she is young but she never once didn’t want to tag along.
So let us have a round of applause to show our appreciation to Andrea, the trustees, staff, volunteers, fundraisers and sponsors of Playskill.