For special needs children
  A A A

CALL 07713 565 120


 

Parents

Parents and carers are very important to us at SHIP and SPLASH, and we all work closely together to maximise the opportunities we have to support our children and young people, as well as providing essential respite for the people who do the real hard work.  We are continually reviewing what we do and how we do it,  to ensure that we are meeting the needs of our families. We have recently been awarded a grant by Awards for All at the Big Lottery to undergo professional evaluation, and this is now being carried out by Mike Martin Associates.  This study will look at what we do currently, and how we may develop as an Organisation in the longer term.  Many of our parents and carers have given valuable feedback to the Consultants so far, and we are very optimistic about how this study may help us to grow and improve. Please keep the feedback coming - it will form part of our future planning.

 

Some of our parents and carers are very actively involved in the running of the Youth Clubs and the Holiday Play Schemes, as well as being part of the Committee which meets several times a year.  We could not, in fact, function without them, and the time and effort they give is invaluable to our children and young people.  We are very keen for new parents or carers to join our Committee and pitch in with us - you would be guaranteed a warm welcome!

Day in the Life of a Ship Parent
 

One of our parents kindly agreed to share with us her experience of what it is like to have and live with a child who has a severe disability, and her account will resonate with so many other carers out there who have gone through something similar ; sharing experiences like this can sometimes  help us realise that we are not alone in facing the challenges we do, every day.  We are hoping that in the near future we will be able to put members of our parent/carer group in touch with each other through a secure "chat-room" section of our website, so that we can benefit more from each others' ideas and experiences - it is very difficult for many of our parents and carers to be able to meet up because of the responsibilities we have to our children and young people, and the time and energy commitment this requires.

Splash Parent Story
I have been asked to write a parent story about my experience of being L’s parent.

L was born when I was 28 – a very much wanted first baby. There were no signs when I was pregnant that anything was wrong. I had a normal delivery and all seemed ok. There were some minor concerns about how she held one of her legs when she was first born but as I had been a very fit person (gym 6 times a week) before I got pregnant, it was put down to me having had a very small bump for a 7lb 15oz baby with no much room for her to move about.

We started having some concerns when she was 2-3 weeks old – she took ages to feed (bottle feed), and was very noisy and thrashed about when she was placed on her back to sleep. She made lots of noise on her back – so much so we couldn’t sleep in the same room as her. As first time parents we didn’t know what was normal and what was not. We saw our HV and GP – who thought she had silent reflux.

She was seen by another GP who referred her to physio as they said she still held herself a bit funny – so the hospital visits started at 5 weeks. One hospital paediatrician said they thought she was ok – another said he thought she might have something wrong with her skeleton – she was floppy, looked a bit unusual and couldn’t change position.

At her 8 week check our GP told us she thought there was something really wrong with her and sent us back to the consultant paediatrician at our local hospital  - we still couldn’t believe this was going on – couldn’t take any of it in – to us she was just L – and after chromosome analysis we were told the devastating news that she had Smith-Magenis Syndrome – caused by missing DNA. The consultant told us she would have severe learning difficulties and extreme challenging and self-injuring behaviour and sent us home – she was 11 weeks old.

To be honest I can’t remember much of L’s first year – apart from hospital appointments which were never ending and in which we had to re-tell the whole tale as no one ever seemed to bother doing any research before we came – they’d never heard of her condition – kept asking us what it meant. They appeared oblivious to the impact of having to do this at every appointment – and also the fact that the consultant kept seeing us in the same room in which he’d given L her diagnosis which made me physically sick before attending every appointment there.

The things I remember are trying to deal with my own feelings and guilt for not wanting to be in the situation – not wanting a baby “like that” – wanting her to die even so I didn’t have to go through all the pain. To be told when your baby is just so tiny that they’ll never get married/ have kids/ have their own life/ you can’t be a granny/ they can’t go to university – to have all that taken away – nothing can explain to you how that felt.

And then there was all the upset from family members who kept asking questions and we had to try and answer how and why it had happened when no-one could tell us that – and to explain it wouldn’t go away or “get better”.

I felt paranoid when meeting people – people who knew would try and make us feel better by saying “but she looks normal” (comments made to try and help you but they seem like insults and you never forget them being said or who said them) – and worrying that people who didn’t know would look at her and know she “wasn’t right”. I tried not to go out unless I had to.

Friends’ babies were rolling/ sitting/ crawling/ cooing/ babbling/ walking/ talking in that first year and L was so so far behind and everything was such a struggle – we did physio exercises every day – our physio had explained she had low tone and it took her twice the effort of a normal baby to do things and that’s why she was always so tired.

I had bad depression due to the stress of it all and started to withdraw from the normal baby activities then – why go to baby groups when I felt everyone would be looking at her and knowing she wasn’t normal and wondering what I had done to cause it. I felt I had nothing in common with these other mums whose babies were just naturally doing everything that L couldn’t do or it had taken her such a struggle to manage.


L is now 7 – she has learning difficulties/ chronic sleep problems (she is up about every night despite major medication)/ self-injuring behaviour/ ADHD and a recent diagnosis of ASD. She needs help with all her personal care and constant supervision as she has no awareness of danger and is very impulsive and can’t stop herself doing things like trying to chew electrical cables/ fiddles with switches and sockets. This also extends to when she is outside as she has no road sense and no idea about the dangers the world could mean – she’d go away with a stranger if they approached her with a smile and a sweetie. She can’t play on her own very well – has no imagination really and can’t stay on a task without adult help. She is exhausting to be honest – but also a very loving, friendly girl who is younger than her age. She attends mainstream school with a lot of modifications and full-time support but finds it difficult to cope there now she is basically a nursery-stage child in a P3 class.

Mainstream school has been good for her but it’s hard for me to cope with at times – I collect her from school (she goes to school by taxi due to challenging behaviour in the car and she couldn’t cope with separating from me to go into school and would strip and head bang in the school playground with all the other parents staring at us and tutting) – I see some children not wanting to be near here and distancing themselves – on bad days it just feels like a slap in the face, watching all those kids doing things she struggles with,  and hearing parents going on about their kids achievements and their holidays. Again I feel a strong sense of coming from another universe and having nothing to contribute to the conversation.

We also have another daughter who is 2.5 and very bright. At times I feel like I have two toddlers in the house – they are very alike in the stage they are at in a lot of ways.


L has been going to Splash in the holidays for the past 2 years. Due to her difficulties I work part-time but term-time hours, which means my only break from the kids is when I am working 3 days a week – and I am never away from them in the school holidays.

School holidays are one of the most difficult times with L – she thrives on routine and needs constant entertainment/ help from an adult – she is thrown by her routine being broken and can’t cope with being cooped up in the house. We have a tiny back garden which doesn’t give the girls space from each other and live near a busy road so L can’t go out on her own without adult supervision due to safety issues. We also don’t go on holiday any more – it has just proved far too stressful to even bother over the past couple of years – L can’t cope with the change of routine – won’t sleep – can’t calm herself – it is too hard work to take her away, and as my marriage is under huge strain from caring for L and having no time for ourselves – it’s just a step too far to try to go away. I won’t go on holiday as I worry I will come back a single parent – and that I know I can’t face.

I would liken my life as a parent of a disabled child to like being outside a goldfish bowl – looking in and watching everyone else doing things on the spur of the moment (everything for us has to be planned in advance and explained to L carefully – but not too far in advance or she gets completely hyper and can’t cope), having holidays, looking forward to the school holidays (when I feel sick at the thought of it all over again – they get too many holidays surely), being able to let their kids play on their own, sending their kids off on sleepovers, their kids having friends round…….

We also don’t plan for the future at all – no holidays/ life events etc. You never know how L will be from one day to the next – she has good spells and bad spells when her behaviour gets even more unpredictable and escalates very fast. I take a week at a time – if it’s a very bad day I concentrate on getting through the next 30 minutes – one step at a time closer to bed-time and 5 minutes head space.

L talks well – but she talks all the time – can’t stop talking – asks repetitive things over a million times until you want to scream – if she’s there you can’t hold a conversation with anyone else – she interrupts and can’t stop herself. To think there was a time she couldn’t talk (she didn’t speak till 3.5) – now I look back fondly to the time she signed and I didn’t have a constant headache!! She finds it very hard to focus on what you’re saying – instructions etc have to be given over and over, trying to get her just to stop for a moment and focus on you.

I feel very left out – other mums will talk about their lives and their children’s experiences and it’s almost like a foreign language – they have no concept of how different my life is – how trapped I often feel and how I always have to put L’s needs first before my own, making sure she is ok and has what she needs to be able to cope in a world which can be too busy/ too noisy/ too hot/ too cold/ confusing for her to try and understand.

I have my parents-in-law who are wonderful with both girls and my MIL especially has been amazingly supportive – but she helps look after the girls when I go to work – so it feels selfish to ask her to have them for a bit of me-time. I don’t have a friend I could ask to look after the kids – that looks awful when you write it down but there it is. My parents don’t do babysitting really – if I have an emergency with L I can ask them to have the little one for a bit – but they would never offer to have L and I wouldn’t ask – to be honest I feel they think she’s too much hassle – so if she’s not wanted I won’t ask. My parents are just the way they were with me and my brother as they are with my girls – they expect kids to sit there quietly whilst the adults talk – cause no fuss etc. Never mind that L just can’t do that – “she’s just being naughty to get your attention”/ “if you are calm she’ll be fine cos kids pick up on things” etc – and according to my father she’ll grow out of having SMS and ASD as well – L must be a medical marvel!! My brother is a very self-centred person with a high powered job, and is never in touch and wouldn’t know what to do with a child.

So Splash has been a god-send for me – L loves to go – she loves the bus/ seeing the other kids/ the helpers who are so friendly to her/ going on trips out. It is very often the only break I get from caring for L in the school holidays, and means she can go on days out which would be impossible for me to manage with two children on my own as L finds travelling in the car for longer than 30 minutes stressful and can become very challenging. On the bus she has someone to look after her and make the journey easier – and she loves to look out the window and watch the other kids.


Splash also gives me a chance to spend some one-to-one time with her little sister whose needs are often neglected I feel as we have to fit in with L’s needs, can’t go places spontaneously due to L’s anxiety and hyperactivity, and she has to come to most of L’s hospital appointments as it’s hard to find someone to look after her during those times.


The days out also fill up some of that gaping void of time which is the school holidays, and knowing she has some time away when she is having fun and I can get a bit of a break from her helps me cope with the days when I do have the two of them on my own and feel so isolated.

I also see such a caring side in L when I pick her up from her days out – saying bye to other kids/ having a cuddle with children she knows and hearing maybe a story of how she helped “look after” another child during the day. I think it’s important for her to know there are other children like her out there, she can see she’s not alone and that other children are special like her too – also that she can help other people when so often she’s the one who needs the help.

The work Splash does is of a huge value to my daughter and our family – but most of all to me – it helps me cope better with the never-ending job of looking after my daughter. I genuinely couldn’t cope without it now. The play leaders and volunteers are so welcoming to both parents and children alike – she has somewhere where she can be herself with her unusual ways and nothing is thought of it – and I can get a break knowing she’s safe and well looked after.

 

USEFUL LINKS
 
 
 

Useful Links

1. Parent 2 Parent Website (click here to visit)

 

2. www.workingfamilies.org.uk -go to resources, parent and child,  and click on the document "from child to adult" for brilliant summaries of benefits and financial advice

 

3. www.familyfund.org.uk

 

4. www.scottishautism.org

 

5.  www.netbuddy.org.uk  - for practical tips on behaviour management

 

6.  www.cafamily.org.uk - for info on holidays, legal matters and LOTS more - this is a great resource!

 

7.  www.enable.org.uk - download the "tricky moments" booklet, made up by Perth parents & professionals - help with managing behaviour

 

8.  www.mindroom.org

 

9.  www.pamis.org.uk

 

10. www.carers.org

 

11. www.sensescotland.org.uk

 

12.  www.sleepscotland.org

 

13. www.equalfutures.org.uk

 

 

Parents and carers - if you come across any other websites which you found helpful, and you think others might too, please email to Jackie on jackie.doig@ship-splash.co.uk , thanks!

 

 

 
 
Opening Times

SHIP (youth club)
Mon  7.00pm – 9.00pm (age 12+)
Tues 6.30pm - 8.00pm (age 5-12)
(Cost £5.00/session)

SPLASH (holiday play scheme)
Mon & Thurs 10am-4pm (age 5-12)
Tues & Fri 10am-4pm (age 12+)
(Cost £15.00/session)

Easter holidays – one week
October holidays – one week
Summer holidays – five weeks

Find Us

Ship - Support Help &
Integration 

Glenearn Community Campus, 

Glenearn Road, Perth, PH2 0BE

 
Ship Splash Centre Location
5 point Scale letter
Autism For Parents And Carers
5 point scale
Childrens New Profile Sheet
Parents document 3
SHIP Behaviour Policy
Funding Partners
Bank of Scotland Foundation Awards supports SHIP The Gannochy Trust
Common Good Fund
Awards For All Scotland
 

Home |  About |  Funding Partners |  Committee |  Kids |  Parents |  Volunteers |  Events |  News |  Contact Us |  Terms & Conditions |  Privacy |  Sitemap 
Ship n Splash (2014)
Web Design: Inspire Web Development
*LP*