Parents' speeches from the 2014 AGM

Jane's Speech

Hi, my name is Jane and I'm mum to Eleanor who turned 2 6 weeks ago.  Here's our journey to Playskill.  As an expectant new mum, the wrong side of 35, but under 40!, I had a very smooth pregnancy - no morning sickness, no chronic heart burn, continued with my regular gym class twice a week right up until Eleanor's birth, and the crucial blood tests all came back negative so what a relief, and what could go wrong...?!   There were a couple of unscheduled scans but they showed normal with Eleanor on the 50th centile.  Eleanor was though breach so I was booked in for a c-section on 25 September. Eleanor did at least let me experience contractions particularly on the drive through rush hour, to hospital!   Eleanor arrived at 9.31am and they announced a daughter (we didn't know what we were having) and then the shock, Eleanor was 4lb 15oz.  Running through the back of mind I was thinking how could that be as everything was showing normal but none of the medical staff gave any reasons as to why Eleanor was so small, and being a first time mum, I didn't ask why this might be.... Although Eleanor was small, there were no other signs of the things to come.

So we did the usual mother and baby groups and as the weeks went on, I felt she wasn't developing as the others babies her age.  A health visitor took some measurements in the November and suggested we see our GP as she felt Eleanor's head wasn't growing as it should do.  So we saw the GP and she did the referral - 'failure to thrive'.  After a screw up at the hospital we eventually saw the paediatrician in February - I can't remember much from that first appointment save we were to change Eleanor to a 1cal per mil milk and a physio referral would be done as Eleanor was quite stiff but that got rejected as not enough information had been given.  And then our world crashed - Eleanor stopped taking her bottle in early April so we had a week in Watford General where an NG tube was inserted so we could feed her but then the vomiting started which they put down to reflux. The plus points to being in hospital was that the physio referal was finally made and we saw the ophthalmology team who advised Eleanor was very long sighted.  Eleanor also had an MRI which showed delayed myelination.

I remember sitting in the the paediatric A&E department before Eleanor was admitted and overhearing another parent telling the staff that her son was autistic and had global development delays and thinking thank goodness Eleanor doesn't have GDD - yes I knew Eleanor was a little behind as she wasn't sitting and wasn't interested in playing with her toys but that would come on ....  After Eleanor was discharged, we went to the weekly Health Visitor drop in session and I remember one of the health visitors telling me about Playskill but in my mind I was thinking, why are you telling me about this, Eleanor won't need this - she's just a bit behind but she will catch up and we were now seeing the NHS physio who had given us things to work on but the weeks went by and still I didn't see improvements.  

So I went online, looked up Playskill, and got in touch. Tanya emailed me an application form, mentioned a waiting list (oh god no, a waiting list I thought...) and said to get it back quickly as assessment places were being made.  So I filled in the form and we got an assessment appointment.  I had no idea what to expect - we turned up and it looked a bit chaotic but everyone was in their red Playskill poloshirts and looked like they knew what was going on!   I met Claire, and she was lovely- she went through questions and concerns etc but I don't remember much else from that first visit other than we had to go back to continue our assessment... but the main thing was Eleanor had got a place!  At last, Eleanor would get some help, we'd see her develop - perhaps catch up..., well you never know..., and I'd meet other parents in a similar situation to us. 

I remember that first session and in particular the tea break for parents/carers.  Other than one other parent, everyone else knew one another as they were Playskill 'veterans' but everyone was friendly and as I spoke about Eleanor, the tears started.  But also, I remember the emotions I felt, feelings of being overwhelmed and perhaps a sense of relief that others would get what we were going through, as well as feeling humbled that here were all these people who wanted to help my baby, and yet privileged that Eleanor had got such a precious place as I knew another mum who's son hadn't got one.

Eleanor's behaviour that first session was pretty much how she was for the first term: she was stiff and limbs going everywhere, pulling at her face, not interested at all, and wouldn't even try messy play - one of the issues we had was that she just didn't use her hands unless pulling at her face or pulling off her glasses.   Eleanor didn't meet her targets that term and part of me felt so deflated - Playskill was meant to help and yet I didn't see any 'improvements'.  Term finished and then around mid-December there was a small change.... maybe things were starting to click into place... And phew, we got our letter at the Christmas party to confirm Eleanor's place for the next term.  So the new term started off much as the last term had finished but very slowly I could start to see Eleanor engage a little; somehow she hit some of her targets and her standing in the tot stander - she was too small for a full sized standing frame! - got better. And then we were back for summer term -  Eleanor started to engage in messy play and one memorable moment was Eleanor doing some supported free standing with a tray of cornflour in front of her and both hands were in the tray and before we knew it, her face and hair were covered!  Eleanor had an amazing summer term, she smashed her sitting target, was actively hitting the big mac button and was getting her hands into messy play.  And here we now are, into our fourth term and we're the Playskill veterans in our group! Eleanor's propped sitting has got more tricky as she's wanting to use her hands and she still pushes back but then, when she's engaged, and Andrea's worked out what position to get her into, she can sit beautifully with minimal support for short periods. She's not in the tot stander/standing frame as Playskill have fitted her with some gaitors so she free stands with support.  Her hitting of the big mac button is now very intentional and we can sometimes get her to sign 'more'.  She also giggles in the rug when being swung and her eye contact is improving all the time.  And Julie commented this week how much calmer Eleanor is. 

So Playskill and the team:

- it is tough - some days I feel Eleanor won't ever get there but then we'll have a great morning at Playskill and perhaps, maybe she will get there or at least some of the way there.  Everyone is positive and that is what you need.  Also when Eleanor is with one specialist as she's doing something another specialist is working on, that information is shared there and then.

- it's about meeting other parents so you can hear their experiences - yes it's scary to hear what they are going through and thinking oh god, that'll be the same for us/or worse but on the other hand, you get to hear what they've done so you're forewarned about what's out there and to come;

- the training sessions by the Playskill team;

- the loaning of equipment which you might not otherwise get or know about and which you can raise with the NHS specialist; or learning about the aids that only the NHS specialists can request or refer you for;

- the additional sessions where without them, you wouldn't know what else is out there - eg Contact A Family; or the new 'statementing process'.

So we know Playskill is about developing 'skills for play, skills for life' but it's more than that to me:

P - is for personal.  The targets are personalised for each child and the team take the time to get to know the parents too;
L - is for being listened to and listening to all that is going on, whether it's the specialists, volunteers, other parents, or the children;
A - is for achievement no matter how small or big it is, the achievements are celebrated;
Y - is for you, the specialists Andrea, Debbie and Bev, the specialist workers and volunteers, the trustees and Tanya - who make Playskill happen;
S - is for steps.  The steps our children are taking to help with their development but also the steps we parents and carers are taking on our journey;
K - is for knowledgeable. Not just the specialist areas of physio, OT and speech and language, but what's out there and who can help;
I - is for inclusive.  No matter what the background of the child is or their physical delay, each one is treated the same;  
L- is for learning.  What we learn during the sessions so we can take home and work on but also what we learn from all the extra things Playskill puts on; and finally
L - is a lifeline.

So a huge THANK YOU Playskill for doing all that you do for Eleanor and all our children as well as us parents.

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