Category Archives: Guest Blogging

Coping with Sleep Deprivation for Special Needs Families

By – Tina Baily (Twitter @TheMotherGeek)

As a special needs family, some days can be stressful, intense and very very long. Our chances to take a break or have child free time can be pretty much none existent.

People frequently say “I don’t know how you do it”. For me, that’s easy. Love. I will do everything I can to look after my children. If that means surviving on 2 broken hours of sleep a night, I will. At least for as long as I can.

In the past few years, my husband and I have developed a few ways to push through the sleep deprivation, and make our days easier. Our eldest child, Sam is 4 and has low functioning Autism. Our youngest child is 3, and she was a terrible sleeper, until recently.

Sensory LightsMy first sanity saver has been buying Sam a single bed with a pull-out guest bed underneath it. This means that on the nights when he wants me with him, I can just pull out the spare mattress and snuggle up near enough to soothe him, without lying on the floor or taking up half of his bed. This has been worth it’s weight in gold when he’s been poorly.

Sam has Sensory Processing Disorder and likes pressure. He used to wake a lot in the middle of the night, and be up for hours on end. A few people suggested we get him a weighted blanket, but our Paediatrician said these are not recommended for overnight use. In the end, we got Sam a 15 tog feather duvet. This is really heavy, so he sleeps well underneath it. The duvet is also breathable, so he doesn’t sweat under it. On really hot nights, we put the fan on, so he is kept cool.

A Blackout Blind is also a must have in the Summer for us. The second Sam wakes up, he is up for the day. If the room is dark, he will lie quietly in bed, watching his sensory lights on the walls and ceiling while I get a sneaky extra hour’s sleep in.

Sam is still in nappies, and loves to remove them. I have managed to prevent this by putting zip up onesies on him, back to front so he can’t get to his nappy. This is more for my benefit than Sam’s, as it prevents the 3am bed changes when he’s leaked everywhere, after removing his nappy.

Caffine saves the daySome days, I am too tired to function. I used to hate this, but now I accept that it is part of our “normal”. I have a stack of books / stickers / iPad games and DVDs on standby to keep the kids entertained on days when I need to take it easy and look after myself.

Having people to talk to who understand is also a great tonic. There are lots of great special needs communities out there now. Search on Facebook or twitter for #specialneeds and you’ll find lots of people who understand. The #AutismMom hashtag on Twitter or instagram is a great place to find other Autism mums.

Finally…. Caffeine! I am a huge fan of coffee and cake. I find it to be the perfect mid-morning pick-me-up. (It’s also good during mid-afternoon…. or at 4am)…!

Someone said to me a while ago that if I didn’t start taking care of myself, I wouldn’t be fit enough to look after the kids. That stuck with me. Sometimes leaving Daddy in charge while I have an hour of peace, soaking in the bath can feel like the biggest indulgence in the world.

So, these are a few of my go-to sleep deprivation hacks… what are yours?

Tina

Occupational Therapy Students from Derby University

derby-uni-1As part of the ‘play’ module which we studied at university, we were generously invited along to Rompa to meet the people who were designing and developing sensory equipment and toys for a wide range of clients. The day began with an introduction with Tania, an Occupational Therapist who works in the role of a Product Assistant. Tania firstly spoke about her journey into this role and about how her experiences on practice placements as an OT helped her to identify barriers and enablers to the development of sensory products. We then heard some history about the company and discussed the need for sensory based equipment and toys for use within therapy. Following our discussion and a browse through the Rompa catalogue, we were guided through the set-up sensory room which incorporated products designed and built by the staff at Rompa. The products were demonstrated and explained to us and we had time to think about how each product could be utilised by an OT and graded for our clients. We initially focussed on children and how these products could be used within a paediatric setting (as this was relevant to our ‘play’ module) however soon discovered uses for these products for a wider range of clients such as stroke patients, dementia patients and those with mental health conditions.

derby-uni-2After a tour around the sensory room and introductions to the toys and equipment, we were given the opportunity to explore the equipment for ourselves and to apply the ‘sensory magic’ technology to a given case study. Our case study involved preparing a sensory room for a group of children with ASD whom had been for a day trip to the fair. This was a very fun and educational task which really got us thinking and working collaboratively to utilise the equipment we were given. This involved bubble lamps, various lights presented in creative ways around the room and ‘sensory magic’ which allowed us to select music as well as a video or still image on the interactive screen for added sensory input.

derby-uni-4We really liked that these toys and gadgets are not just for kids. They are used for adults with dementia too as well as well as clients with different abilities and needs which makes them much more widely used and applicable to areas of practice! However there may be a lack of availability of the equipment to play with from the wide catalogue range and this equipment is sadly not always affordable for all clients despite the value for money which Rompa offer.

From our experience of visiting Rompa, we learnt that the use of sensory equipment can promote wellbeing for individuals living with a multitude of conditions. These can range from individuals on the autistic spectrum to older adults living with dementia. It has been a crucial learning experience which has contributed to our development as up and coming Occupational Therapy graduates. It will be beneficial to be aware of the variety of sensory equipment that is available in our professional working with individuals with sensory difficulties. We also learnt that Occupational Therapists have unique skills that allow them to work in a variety of non – traditional positions.

derby-uni-89Overall, our visit to Rompa was extremely interesting and inspiring. It allowed us as therapists to visualise ways in which we can assist our clients with sensory impairments to become fully involved within their own environment. The demonstration of the ‘Sensory Magic’ programme allowed us to appreciate how much technology has advanced over recent years and enlightened us to the possibilities of incorporating the whole room with visual effects, sounds and smells, using one user friendly piece of equipment. As therapists, it is highly beneficial for us to be able to offer advice and educate our client groups on the available equipment for children and/or adults with Sensory Impairments, therefore this opportunity has been an invaluable step for us to gain first-hand knowledge and experience of the products and how they can be used to assist clients with sensory needs to live a more happy and fulfilled life.

We are now aware of the many types of sensory equipment available to us as OT’s and how these can be used in a variety of ways with different client groups within therapy. We would now consider using Rompa for advice and equipment in our future practice to enhance the lives of our clients with and without sensory conditions.

derby-uni-3

We would finally like to say a big thank you to Tania and the entire Rompa team for facilitating this valuable experience and would recommend this service and their products to Occupational Therapists and other allied health professionals working within any area of practice!

By Rosie Turner, Jodie Marx, Anna Marshall-Clarke, Andrea Erskine , Joanna Smith, Rosie Linder, Siobhan McPhillips and Laura Higgleton.

3rd Year OT Students, Derby University.

Chernobyl Children’s Life Line Return to Minsk

There were four members of our group that visited Belarus in late April to undertake charitable support as part of our work helping the unfortunate child victims of the Chernobyl Nuclear disaster. As you might remember, back in November (read article)  we were able to take some sensitive lighting that you at ROMPA kindly helped us with, and which made a massive impact on the children who are receiving treatment in the hospital. Well, you will be pleased to know the lights are still being thoroughly enjoyed by the children at the Children’s Cancer Hospital in Minsk and we were able to also let them have the further equipment you were able to donate towards our work. So a big thank you to ROMPA in supporting the work we do in trying to put a little hope in the children’s lives.

One special moment at the Cancer Hospital was when I was asked by a child what I would be doing and I told her I would be visiting the British Ambassador the next morning and she asked me to pass on her best wishes, which I did. I also asked the Ambassador if he would reply with a personal letter which he promptly did and I took it to the girl at the hospital. She was absolutely amazed that she had received a personal letter from such an important person who didn’t know her and it was such a special moment for her. The child psychologist at the hospital told me it was the best medicine any one could give the child as it made her feel special and that someone somewhere was thinking of her and took the time to write to her. To see her face was a very emotional moment for all of us including her mother who was not the only one with tears in her eyes.

While we were in Minsk we took some diabetes testing equipment to the endocrine hospital and also visited an orphanage, the British Embassy and many other places around the City. At every place we visited we took lots of toys for the children and tried to make it a very special day for them in their lives.

After leaving Minsk later in the week we proceeded to the town of Osipovichi where we visited school No 4, the school from where we take our children from when they visit our area for a convalescing break during the summer. Whist there we had an opportunity to meet the parents and the children who are due to be coming in July and enjoy a concert in the school. The remainder of our time in Belarus was spent visiting homes and families to get a better idea of the problems these unfortunate families have to deal with on a daily basis and again there were many emotional moments as we visited these wonderful people, that despite their poor conditions always made us welcome and were so hospitable in every way.

We will be continuing with our work helping these unfortunate children and if you know of anyone who would like to join with us or host a child in their home please pass on our details to them. Likewise if there is anyone who would like to support us in any other way please pass on our details. Chernobyl Children Life Line is a totally voluntary charity with no salaries or huge on going costs, so you can be assured that any support given is used for its intended purpose and very much appreciated.

Richard A Street
91 Wharf Road
Pinxton
Derbyshire
NG16 6LH

Email: [email protected]
Web: www.ccll.org.uk/pinxton

Our Journey to an Autism Diagnosis

By – Tina Baily (Twitter @TheMotherGeek)

Tina & Sam

Tina and Sam

When our son was 18 months old, he still wasn’t walking, talking or responding to his name. He rocked – a lot, and bounced up and down for hours on end on his knees. I mentioned my Autism concerns to our health visitor, and we were referred to a paediatrician. Initially she said it was probably delayed development, but when he still wasn’t speaking or responding to his name at 22 Months, we began our journey towards an Autism diagnosis.

The months between our journey beginning and Sam receiving a diagnosis were really hard. I felt very lost, and overwhelmed by the whole experience. I felt like a fraud for asking about support as Sam hadn’t yet been diagnosed with anything. It was a very lonely time. I had no idea what to do to help Sam, and I was scared about what the future would bring.

As time went on, we saw more and more professionals, who gave us more and more advice. I tried to implement everything which was suggested, but eventually realised that I knew Sam best – some suggestions were none starters for him, it was as simple as that.

One thing which has always helped to get Sam to engage is shapes. Whether it be drawings, toys or iPad apps – if there was a shape involved, Sam would spend time exploring the item. I spent a lot of time doing shape puzzles with him, and this helped us to realise Sam’s potential. He is non verbal at the moment, but if you ask him to find the square, he will find it almost immediately. The same applies to most shapes, colours and numbers now. He spots shapes in places where I would never notice them.

I clung on to this, and stopped focussing on the things Sam wasn’t yet doing. By encouraging him to do the things he enjoys, Sam has developed other skills. His hand-eye co-ordination has come on massively, thanks to puzzles and iPad apps. Sam’s social interaction has improved hugely too, by playing alongside and then with him, while doing activities he loves – not necessarily the ones he will “learn” the most from.

If I had to give one piece of advice to a parent beginning their child’s autism diagnosis journey, it would be “ask what support is available locally”. I went to our local Autism family support group, and made some great friends. It was amazing not having to panic and explain Sam’s needs when he began shouting.

There is plenty of support online, too. I found the #AutismMum hashtag on Instagram and Twitter amazing for finding other UK based Autism parents. You can find me on Twitter at @TheMotherGeek, and you can read more about our autism journey at mothergeek.co.uk as well.

Thanks for reading.

Tina