Effects of safe environments on Autistic twins.
One of the biggest problems today for both carers and for health care professionals is trying to access funding especially from cash strapped local authorities. Funding can take anything up to 12 months to come through and is often completely refused if the equipment in question cannot prove its worth. When OT Sara Rodway saw one of the families in her care struggling to cope with twin six year old Autistic boys she knew something had to be done urgently. Having tried 11 different beds without success. She applied to Newlife Charity for an emergency loan of one of our travel pods. When we delivered the Travel Pod we quickly realized that the family really needed two pods so we donated one of our ex-show samples to the second twin.
Having never used our products before Sara was very pleased that from the first night the pods seemed to have a marked effect. As she continued her case study she realized that the pods were having a massive effect on the twins, the family and the costs to society. Over the last 6 months the twins have been able to come off the Melatonin they were taking saving £6000 per year, their father was able to go back to full time work the family no longer needed respite care and the twins are doing much better at school. Sara is now using her case study to approach Stockport Council for funding for permanent Safe and Sounds for the twins when the Newlife loan comes to an end. The news so far is very positive and we have even been to Stockport to demo our products to the funding body. To help other people access funding Sara has very kindly let us have an edited version of her case study that may help your case. If you would like to add your own data that may help others access funding please contact us.
Our first client – Simon
In 1998 Simon was the first person to use our new freestanding safe room built using tough PVC fabric tensioned against a steel frame, the development of our products started from here. Simons Mother tells us his story:
Simon’s first Safe room was made for him when he was just nine years old; straight away it made the biggest difference to his life (and ours) that you could imagine and has carried on doing so for the last sixteen years.
Before it arrived my lad’s own bedroom was a risk to him, even with his mattress on the floor, the window covered and radiators removed he was still injuring himself on the walls and any hard surfaces. Plug sockets were boarded over and carpets and light fittings removed to try and keep him safe. He didn’t sleep more than an hour or two at night and my worst fear was that I’d wake up one time and he’d have got out of the house.
Fitted on Dec 23rd 1998, the Safe room changed everything.
It gave Simon his only safe place to spend time alone. He took to it straight away spending time in there during the day as well as at night, very quickly becoming much calmer if he could go there when he wanted to. Simon was safer now and he was able to have all the ordinary things we take for granted – light, heat, ventilation, his first ever pair of curtains -he’d pulled them all down before. He even began to sleep a bit more. The whole family got sleep for Christmas that year.
I know Simon’s Safe room is the thing that kept him safe and at home with us for another ten years rather than needing residential care. Now a very grown up twenty five year old living with other young people in supported accommodation he still uses his Safe room, it continues to keeps him safe whatever his mood and is the thing that enables us to still have him come home.
Father of Twins-
I’m a father of twin boys aged 6 both with Autism. For many years both boys have only slept for four to five hours per night, so my wife and I have always been up through the night keeping the boys safe and putting the boys back to bed.
The boys would climb on window ledges; bite though wires, eat things they shouldn’t, undress, hurt themselves and each other.
After doing everything we thought possible, putting up window shutters, locking everything away, installing cameras and going through 13 different beds we were at our wits end, until we were given a Safe & Sound. We can put each twin into a Safe & Sound and know their safe and they are very happy to go in and some nights they sleep a little longer than five hours AMAZING!
It’s a lovely piece of equipment and there’s something calming about it once inside. There is no climbing out, no eating things they shouldn’t, no bouncing and no hurting themselves.
If you’re a parent going through sleepless nights, night after night frustrated because you cannot help your child sleep and they are doing things that break your heart and all you want to do is keep them safe while you get a little rest, then I would highly recommend this product. (Mark, Dad of twins)
Assembling your own Safe & Sound pod:
The safe and sound arrived yesterday as promised, was a bit nervous about assembly when I saw the size of the pallet but it was very straightforward in the end! Our son had his first night in it and it worked well, hopefully it won’t take long to become part of his routine and it will transform his sleep habits! Many thanks for your help with this order; your company has been a pleasure to deal with. (SAFE & SOUND MAXI)
Didn’t take the boys long to built! Easy to build than an ikea book shelf apparently! G is already having a nap in it. Thank you so much for all your help. It was a very smooth and hassle free process. Regards L (SAFE & SOUND MIDI Northern Ireland)
Got back from a sunny Tenerife last night unfortunately. The bed was an absolute god send. We put B to bed at 9.30 and he was sleeping in no time leaving us to enjoy a drink on the balcony. Something we have never been able to do before. He slept all night every night. He would even go in there himself in the daytime for a rest. It took us no time to assemble and dissemble. Life changing!!! (SAFE & SOUND TRAVEL POD)
Better sleep for wee Jake.
Would you believe it’s the first in three years Jake has slept more than 3 hours! He was very happy and relaxed in there..Here’s to more sleep lol. It’s going to be a God send to us..and most of all to Jake!
Only regret is not getting one sooner-
Thank you for delivering and installing Jonah’s bed last month. He is sleeping really well in it and I have to wake him up nearly every morning. As far as I know, he has not been waking during the night as I’ve not heard him. My only regret is that we didn’t get one sooner. It’s absolutely brilliant!
Comments from our customers this month-
“She slept right through till 5.30 which was great, absolutely love it”
“An excellent first night in the pod”
“He really is so much happier in there. Still head banging, but we knew he would…The difference is that he has so much more room than his cot which is wonderful. We love it… I can’t thank you enough.”
“Absolutely amazing . She loves it and is sleeping much better. She still stirs but moves herself around and settles again. It’s everything we wished for.”
Rhythmic movement disorder-
From the age of 9 months old, my perfectly healthy little boy developed his own way of self soothing. He would sit up in his cot, and rock backwards and forwards, whilst hitting his head on the bars of the cot. We quickly learnt that this was in fact a sleep disorder, known as Rhythmic movement disorder.
We managed this for as long as we could, by putting him in a travel cot, as the mesh sides were much softer, and impact was less. Sometimes episodes could last hours at a time, so nights have always been disturbed for us all.
By the age of 18 months, the banging became much worse , and the the cot was much too small. We tried putting him on a mattress on the floor,but he would always get off immediately, to search for a wall to rock against. It was heartbreaking to watch, and we felt his safety was at risk. We’d sometimes not be able to get in his bedroom,as he would be sleeping in front of the door.
We were a very unhappy household, and decided that we needed to find a safe place for our son to sleep at night. By chance, I found Creative Care, and in a desperate state, made a phone call on Sunday morning. I was surprised when Tom answered the phone, and was extremely helpful and understanding of what we were going through. With the help for Tom and his team, we had a found a solution for our little boy, and his new bed was on its way to us in just a few days.
I managed to build the bed myself by following the online video…. I just couldn’t believe how simple it was. The best news is that our baby boy is so happy in there, he loves it, as does my 3 year old, who keeps asking for one. Dexter still rocks, but I have to say, that the noise is so much less, and the episodes are shorter.
We’re Absolutely over the moon… For anyone thinking about investing in one, I urge you to go ahead. You won’t look back, I promise.
This months customer feedback-
The travel pod has been truly life changing for us *** sleeps so much better as do we and as a result he has not had a single seizure since delivery and is taking huge developmental steps forwards and his behaviour has improved immeasurably!
I put the Travel Pod together yesterday and it only took me about 30 minutes (I was impressed as it was my first time doing it). Ivan played in it and loved it! We have such a small house that I couldn’t really get any good photos of the bed, but I’m attaching a quick video of Ivan’s initial response (which is adorable). I’m really just amazed by the quality and strength of this product. This is excellent workmanship! It’s durable and comfortable and absolutely perfect for traveling. Good work! (by the way, about 10 minutes after I shot that video, Ivan fell asleep and took a nap!)
Oct – Nov – Dec
Wow thank you so much for *****,s new bed delivered and installed today Wednesday the 9th December 2015 we can’t thank you enough for supplying us with such a fantastic bed and service,it’s taken us nearly three years to get to this stage two social services health and safety assessments and a major fall on the 22/12/2014 resulting in a three month stay in hospital until 12/03/2015 for ***** it’s the first time we have been able to leave the safety chain off his bedroom door he was so excited when we showed him his new bed on his return from school and he wouldn’t get out of to start with so in our minds you have very happy 13 yr old boy and both ***** and I feel a lot happier knowing he,s safe in bed so thank you once again.
‘Great job by the way, the client is thrilled!!!’ L.E. Swansea council
Hi Tom its absolutely wonderful! ***** is taking my hand wanting to go upstairs all the time to lie and chill out with her sensory lights. She has slept through and personal care is so much easier. What a change its made thank you! J
Repeat order for a happy customer:- Around 2 years ago I ordered a safe and sound for my son *****, who is now 6 and has Autism. It has worked fantastically, and I couldn’t recommend them enough.
Amber Bobnar (USA) was so pleased with her travel pod she wrote a review on her wonderbaby website http://www.wonderbaby.org/articles/special-needs-travel-bed
West Lothian courier article-
Newlife buys Midi for Chloe
Chloe stays safe in bed
Gift calms mum’s fears for daughter,7
The family of a little girl from Bathgate are backing an appeal to provide specialist equipment for children in West Lothian with a disability. Chloe Dyet (7) received a specialist bed that will keep her safe at night and her mum Margaret is so pleased she is urging readers to help other local children. Chloe has Downs syndrome and associated congenital heart disease that gives symptoms that include inattentiveness, hyperactivity and impulsiveness. One night the little girl in managed to get out of the house and walk to a shop two streets away. Since then Margaret has been desperate for a specialist bed for Chloe to prevent her getting out again. Margaret is also reluctant to leave her daughter alone in her room overnight as she has managed to climb over child gates, get downstairs and has bitten herself and others. But equipment funded by the Newlife charity will make the world of difference to Chloe and mum Margaret, who has feared a repeat of the frightening incident when the youngster got out the house. Newlife is providing a bed which will give Chloe a safe place to sleep. The bed will withstand Chloe’s habit of biting and allows Margaret to sleep in her own room, knowing her daughter is unable to move round the house. Margaret who also cares for a 19-year-old with abilities, said: “Chloe got out and went two streets away to a shop in the middle of the night while we were sleeping and locked us in the house. “I can’t put her in bed at night and get any sleep. l am a single parent and can’t even go for a bath without worrying. “We have been fighting for help for a while and Sleep Scotland put us on to Newlife. Margaret’s search for funding for the much needed bed had drawn a blank so the charity is paying the equipment costs of £5077 in full. So far the Newlife Foundation for Disabled Children has helped 16 families in West Lothian through equipment grants and loans totalling £18,525.
Now the charity is launching the Newlife West Lothian Fund, providing an opportunity for local people to help disabled children. It said every penny donated or fundraised in West Lothian is guaranteed to support families in the county. A spokesperson for the charity said: Special disability equipment including wheelchairs, walkers, beds, seating and communication aids can help give children independence, keep them safe, relieve pain and overcome challenges. For instance, you could help a child be discharged from hospital, take their first steps or kick a football with their friends. You can help Newlife help more children like Chloe, who was provided with a specialist bed that keeps her safe and allows her mum to sleep. ‘Together we can really change the lives of children with disability and terminal illness, supporting them to experience and enjoy life and all that we take for granted. For more information visit www. newlifecharlty.co.uk/westlothian . Call 01543 931444 or email local@ newlifecharity.co.uk.
Everything going great he’s slept the best he ever has and most importantly he’s safe, your beds are worth their weight in gold. A big thank you to both you & Michelle, you have been great. We absolutely love the bed.
Hi Tom,the bed is amazing!!! My son has slept 12 hours solid for the last 2 nights.Its the longest time he has ever slept and he hasn’t disturbed his older brother who he has to share a room with.He normally has around 6 hours broken sleep each night so it’s definitely a thumbs up from us.
Update May 2016 : The bed has literally changed our lives.For the last 3 years we never had one solid nights sleep and since he’s been in the sleep pod he sleeps for about 8 to 9 hours a night without waking up once.We still have the odd night where he is manic and can’t sleep but that’s not due to the bed.
Safe & Sound Mini Scotland:
‘Just wanted to say a big massive thank you, S absolutely loves her bed and we do too. Can’t believe the difference it has made already 🙂 thanks for all your help. ‘
Travel pod on short term loan to test suitability:
‘The bed has literally changed our lives. For the Last 3 years we never had one solid nights sleep and since he’s been in the pod he sleeps for about 8 to 9 hours a night without waking up once. We still have the odd night where he is manic and can’t sleep but that’s not due to the bed. I am so grateful that you have continued to let us use it until the funding has been approved.
Just wanted to say THANK YOU, the travel pod is amazing, very easy to put together (just need a bit of strength with the zips – thankfully I had hubby!), but I can actually do the rest. We used it while we were away and the improvement is Michael’s sleep was amazing, the quality of his sleep is so much better and he is able to “thrash” about without hurting himself, so much so that we are actually using it at home at the moment, that was not our intention but it has proved so good and the peace of mind it has brought us knowing he is safe is just priceless.
KIDZ South exhibition, Reading:
Newlife charity helps hundreds of children and their families across the UK by funding equipment that is becoming increasingly difficult to get though the local authority. For the right family we believe the beds we make can be life changing and lucky for us Newlife have funded many of our beds. As a big thank you we decided to donate one of our travel pods to the Newlife emergency bed loan service. Heather Campbell from Newlife is seen here at the Kidz South exhibition accepting our donation, hopefully we will add to this whenever we can and support their fantastic work.
Fancy a Triathlon!
With a bit of help from Cerebra anything is possible!
Creative Care Ltd is proud to have sponsored Rob Jones in his successful bid to complete the Cardiff triathlon with his daughter Poppy. Poppy didn’t let quadriplegic cerebral palsy get in her way and with her Dad providing the power and the designers at Cerebra making the special equipment, Poppy and her Dad managed to complete the triathlon in a good time. A big well done to you all, you can read more at http://www.itv.com/news/wales/2016-06-27/youngster-with-cerebral-palsy-takes-on-triathlon/ and at http://www.walesonline.co.uk/news/local-news/how-dad-rob-jones-daughter-11524930
My son has multiple disabilities including severe non verbal ASD, ADHD, 2 chromosome disorders, a genetic disorder, sensory processing disorder and global developmental delay.
His behaviours can be extremely challenging and as he has no sense of danger and absolutely no fear.
This can make keeping him safe very difficult and at night we had to lock our little boys bedroom door to keep him safe.
Unfortunately we did not get much sleep because he would bang his head on the door , walls and his bed.
Our next door neighbours were unhappy because their children were being disturbed at night.
Our other son who has different disabilities was kept awake all night and his school work suffered.
Our OT recommend that we apply to NewLife for a grant to purchase a bed from Creative Care.
Tom came out quickly to measure up and the whole process was fast tracked due to our urgent need to keep our little boy safe.
From start to finish , including applying for funding it took only 7 weeks.
We have had the bed for a couple of weeks now and my son is sleeping so well, he feels safe and absolutely loves his bed.
We chose a really cute design with trains on it and he really loves the pictures of the steam trains and likes to trace the designs with his fingers.
The quality of the bed and the design are absolutely amazing.
His sleep patterns have dramatically improved and he will sleep until 7 am some mornings, instead of his usual 4/5 am.
We love his new bed so much , our lives have been made a lot easier.
Everyone in the family and the people next door are getting a better nights sleep.
Thank you so much for making the bed so quickly and for the quick installation.
I wouldn’t hesitate to recommend a creative care bed to anyone with a family member who has additional needs.