Parent speech 2015 AGM

Michelle's Speech

Hi everyone.  For those who don’t know me, I’m Michelle.  I have two wonderful children - Charlotte, who is 4, and Tom, who is 2 and has Down’s Syndrome…. and another little one due in April, as if life isn’t busy enough!

I remember when I was pregnant for the first time, with Charlotte, saying to a friend at work how scared I was of DS, how I didn’t know if I could ever be a mum to a child who had learning difficulties….  How little I knew and how wrong I was…

When Tom was born, the midwife found a single palmar crease on one of Tom’s hands and suggested it might be an indicator of DS, however he showed no real other markers and so they sent us home saying not to worry about it.  It was 8 days later that we got the results of a blood test we had requested and the diagnosis was confirmed.

The first couple of months were really hard.  We thought we knew about DS and we were therefore terrified, but the more we found out and the more families we met, we realised that nearly all our negative assumptions were wrong.  We were put in touch with our local DS support group, and it was via that group that I met a lovely lady called Sanja, who also has a Thomas.  It’s fascinating for me to hear from parents with older children than Tom, with DS, of all the fantastic opportunities and progress, and it was Sanja who first mentioned Playskill.

We only joined Playskill at the start of the summer term this year and it has quickly become important to us.  We have been pretty pleased with the monthly or quarterly therapy support we receive in the community, but then at Playskill we discovered we would be seeing a SALT, physio and an OT EVERY week at class!  And not only would we have weekly access to these amazing professionals but they, and our keyperson Tracy, would especially take the time to get to know us both, and to give me real support to help Tom at home.  We have stretching but realistic objectives and when Tom achieves a target, the whole Playskill team share the excitement with me.  And we share the excitement of Tom’s classmates’ progress.  We have met lots of lovely parents and their children, and us all sharing progress and achievements, as well as the challenges, is part of the reason that the classes work so well.

Having children is a very emotional journey, and I have found having Tom the biggest emotional journey yet.  Tom has changed me, and my perspective on life, for the better, but sometimes, and I think all parents of children with additional needs would agree, life can be extra tough especially when you work hard and you feel like there isn’t progress.  At Playskill, I feel I’ve received not only practical support, but emotional support to keep me going even when it feels like things aren’t moving forward.  The team has a fantastic morale and spirit that gives me the confidence to know we will get there… and we are getting there!  Tom has met his targets this term – he’s now standing properly for lengths of time, able to use a spoon, drawing, and using two makaton signs together, including (finally!) some spontaneous requests.  Ok, one of them might be for TV, but I’m delighted!

So really I want to take this opportunity to say how much we value Playskill and to thank the whole team for the fantastic work they do.  It makes a real difference.

 

Nisha's speech

My name is Nisha, and my son kush started playskills when he was 20 months old in jan 2015, we attend the Watford pm group on a Friday.

Kush was born in May 13 and was diagnosed with Down syndrome.  It was a shock to all of us and very unexpected, I was very ignorant to the condition, (and actually very ignorant to a lot of conditions out there) which affect such a large number of children and families each year.  We were thrown into a world of "early intervention". Physio being on the top of that list and he had his first appointment when he was only 8 weeks old.

Then his epilepsy set in when he was 16 weeks and we battled for the best part of a year, GOSH admissions, general aneastetics, 2 rounds of steroids, daily sugar and blood pressure checks and a suppressed immune system.  On his first birthday he couldn't do anything, he couldn't roll, he couldn't sit up.  I didn't know what to do and I didn't know where to turn to for consistent help and support.

Well - luckily for me, I found Andrea and Playskill, who provide both of those things.....Help for Kush and support for me and my family. 

I found Playskill by googling different search terms on the Internet. Due to Kush not being allowed to socialise for the majority of his first year I wasn't very well connected and didn't have a support network of other families who have kids with additional needs.

Andrea, I'm so happy I found you!

You have played a key role in identifying challenges and areas of focus for Kush, and putting in place specific tasks and activities, in order for him to fulfil his potential.  And that's the key difference. No one at Playskill has ever told me he can't. And I've come into contact with hundreds of professionals in my short time as a mum, who on many occasion seem to seek to try and give you the worst case outcome.  No one at Playskill has ever said he can't, no one has ever said he won't.  You keep telling me he can, and he will, and that positivity and encouragement is priceless.  Your strength, determination, and hard work has not only helped my child realise some of his potential (so far ) it has also unlocked new ways for me and my family in which to support him on a regular basis.  The therapies we get from the nhs are great, but it lacks the consistency our children and we as parents need, to keep the momentum going. 

Being the parent of a child with special needs is hard, it's relentless at times and it can be very lonely.  Having Playskill has introduced me to fantastic people, staff, volunteers, parents and children.  It's a safe place, no one judges you, no one stares at you (even if your child is lobbing everything in sight off the table) because we've all been there, and everyone just gets it!  You reminds me what my focus is when my mind gets fuzzy, and I'm struggling to keep my head above the pages and pages of "stuff" I've found on the Internet....the "stuff" I need to do, the "stuff" I should be doing, and the "stuff" I could be doing....and keeps me....doing!!!

The workshops that are provided have been particularly important in this aswell.  It really is underestimated the impact these things can have on families that are struggling and googling through the minefield of information out there, and keeps it real, face to face, and human.  It comes to a point where cyber space just doesn't cut it!

Having access to what Playskill offer is invaluable to me and my family.  Kush loves it and it's amazing to see the changes in him of which you have all played an integral role. I thank you all from the bottom of my heart for all you have done for us, the support system you have allowed me to be a part of, and most of all the opportunities you have given our son.

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