All posts by Sensory Seeker

Gruffalo Live Relaxed Performance Birmingham Town Hall 24th August 2014

March 28, 2014Relaxed Performances, Reviewsgruffalo live, relaxed performance, theatreSensory Seeker

Julia Donaldson’s Gruffalo is by far one of the best children’s stories ever written. It was one of the first bedtime stories to really grab our Sensory Seeker’s interest. This wasa lso the start of lengthening his attention span. The Gruffalo is so well written that it appeals to both adults and children. Our Sensory Seeker absolutely loved the Squash and a Squeeze Exhibition, so I just knew he would love to see The Gruffalo Live. The magic of seeing one of his favourite stories coming to life.

Trouble is with these sorts of performances is that you never know how he will cope. Will he be over stimulated with all the sensory input, will he make too much noise, or annoy people by keep needing to go to the toilet, will the disruption in routine be too much. I know I shouldn’t but I do worry what other people think, and me and my husband would hate to think that our son’s behaviour was disrupting the performance for someone else. I have taken our Sensory Seeker to a “Sensory Screening” at The Roses Theatre before. This meant that they cut the adverts and the lights wee low. Most importantly for me it meant that he could get out of his seat, make noises, clap his hands – do whatever he felt he needed to do and I did not feel uncomfortable. So when I discovered that there was a Relaxed Performance of The Gruffalo Live at Birmingham Town Hall this summer I knew we had to go.

Following on from their previous Relaxed Performance of What the Ladybird Heard in January, their Relaxed Performances have been very well thought out and are specially adapted with those on the Autistic Spectrum, with learning disabilities, sensory processing or communication disorders, and those in wheelchairs in mind.

Before you go to the Relaxed Performance of The Gruffalo Live

Preparation can play a key role in how a child copes with a visit – especially if they find change difficult to handle. I know that my son is a very visual learner so I appreciate the time and thought that has gone into the little touches to help him understand where he is going, and what will happen.

There is a short film available, which gives a preview of the historic concert hall. This shows what it looks like, and how you can get there, including disabled parking. It answers many questions that may be asked in order to plan the visit, showing things like the seating plan, facilities for those in wheelchairs, toilets, food and the chill out zone.

Closer to the time of the show (dates to be confirmed) there were be a free familiarisation tour of Town Hall to help get to know the venue, facilities and staff ahead of the performance. I am also really impressed with the visual storyboard of the performance to help the children prepare for the performance before and during the visit. This will soon be made available online to download and by mail or email upon request.

During the Relaxed Performance of The Gruffalo Live

There will be small changes made to the light and sound levels, while the attitude to noise and movement in the audience is more relaxed. There are also added wheelchair spaces, in addition to the standard seating plan, a chill-out zone away from the auditorium and they will keep some of the doors open in case people need to come and go during the performance. In planning for the relaxed performance, they have consulted with individuals knowledgeable in the areas of autism and learning disabilities, and will provide specialist training for their front of house staff, and a briefing to cast members.

Town Hall, Victoria Square, Birmingham, B3 3DQ, West Midlands, United Kingdom

£12 plus transaction fee* £2.50 transaction fee, plus £1 (optional) postage, will be charged on all bookings except purchases made in person at the Town Hall or Symphony Hall Box office.

This relaxed performance is very kindly supported by the Edward and Dorothy Cadbury Trust, The Eveson Charitable Trust, The Loppylugs and Barbara Morrison Charitable Trust, and The Saintbury Trust.

A relaxed performance is also planned for The Tiger Who Came to Tea (Sunday 11 January 2015).

You may also be interested in The Gruffalo Hunt

I am receiving free tickets to see The Relaxed Performance of The Gruffalo Live. All words and opinions are my own.

Name Recognition

March 26, 2014Personal Postsname recognition, ProudSensory Seeker

Name Recognition – A Proud Achievement

Recently I mentioned how proud we are that our son was writing his own name. To do this he first had to recognise the letters, then copy them, and then remember them to write them without looking. Being such a visual learner we like to ensure there are plenty of words visually around in his environment. Research shows that most learning is done without even trying to remember things. This is why learning through play is so important.

Writing his Name

I am really proud to say that today my son managed (with help) to write his name with all the letters the right way round! (Without looking at a visual reminder).

Not only that his one-to-one support worker looked like she wanted to cry with happy tears yesterday, as she told me how he had written (copied what she wrote) two whole sentences!!!!

We have been playing with things such as letter stickers and shaving foam to help with his letter recognition at home. What letter activities do you do to help your child?

What things have your children achieved – no matter how big or small?

Tree Fu Tom Ranger Utility Belt

March 18, 2014Play Matters, Reviewsdressing up, gross motor, Imagination, movement, Tree Fu TomSensory Seeker

We love Tree Fu Tom in our house so were delighted to be about to review the Tree Fu Tom Ranger Utility Belt Set from Flair.

About the Tree Fu Tom Ranger Utility Belt Set

Two of our boys are in the Scouts (one is a Beaver Scout), but our Sensory Seeker (aged 4) is unlikely to be able to attend Beavers when he turns 6, due to his special needs. He of course wants to be doing what his brothers are up to. I think that this is one of the many reasons that he loved dressing up with the Ranger Utility Bet Set so much, as it comes complete with a scarf and woggle.

There is a storage pouch where the Ranger cards and Ranger book can be stored. This can be threaded onto the adjustable belt. The utility belt has a rotating , reflector Sapstone too and spaces to clip on the Ranger badges, microscope and compass (the older brothers enjoyed explaining to their younger brother about the compass).

The Ranger Utility Belt Set is aimed at those over the age of three years so that even young adventurers can have fun. Although I would say that even at its tightest the belt is fairly lose, and feels like it could do with tightening up a bit, but this does make it easier to spin it around.

Tree Fu Ranger Utility Belt in the Back Garden

This is the perfect time of year for the Ranger Utility Belt set. There are many beautiful things in nature to go off to explore and observe under the microscope. Of course the first place we went with the Tree Fu Tom Ranger Utility Belt on was into the back garden. It is inside a tree in Tom’s back garden where there is an enchanted kingdom called Treetopolis. We were looking for Tom’s best friend and side-kick Twigs, (a silly and energetic acorn-sprite), and his other friends the Treelings. We soon found Squirmtum, who is an odd-job woodlouse with a heart of gold.

Our Sensory Seeker excitedly told me that Squirmtum looked the same as on his Ranger card. Our Sensory Seeker enjoyed looking through his microscope, telling me that it made things bigger.

We did not find the other Treelings – Ariela (a beautiful but rough-and-tumble ranch-running butterfly); Treetog ((a Tree Fu Master and wise teacher), or Zigzoo, (a bubbly, eccentric tree frog inventor). However, we did find a ladybird. Our Sensory Seeker was so excited that after dinner we all decided to go off and try to find some frog spawn. We were unsuccessful but are going to look again at the weekend (when the sun is up). Then we can utilise the microscope and record what we see in the Ranger book.

Sensory Processing Disorder and Tree Fu Tom

Our Sensory Seeker has problems with his gross motor skills. He is currently seeing the occupational therapist at school for this (the fizzy programme I believe) but we like to help him develop at home as much as we can. What we liked about Tree Fu Tom is that it gives him Sensory rewards for making movements.

The Tree Fu Spells were designed with children with Dyspraxia, and other movement difficulties and disorders, in mind. The spells encourage and guide children to teach and practise the movements in many of the key areas needed for everyday activities. This can then benefit them in areas such as eating, dressing, writing, sports, games and so on. Tree Fu Tom is aimed at children who are developmentally at an important time for their growth. This belt was particularly good for our Sensory Seeker to help with his hand development – having to squeeze the clips and badges to get them on and off the belt. I think this is beneficial as the occupational therapist feels he has hypermobile hands.

Tree Fu Tom is developmentally in other ways (for children with or without Special needs). Tom is a born leader using his Big World Magic to save the day against impending disasters, whilst up against the mischievous Mushas (siblings Stink and Puffy, the foolish fungi). Making the audience Superheroes as they help with the magic is very empowering, good for their confidence and helping to boost self-esteem. The lessons in friendship are good for social and emotional development.

I would definitely recommend this product.

I was sent a free Tree Fu Tom Ranger Utility Belt Set from Flair for purposes of review. They are available from Smyths Toys. All words and opinions are my own.

Fine Motor Development Helping Hands at School and Home

March 17, 2014Diet, Health & Hygiene, EducationFine Motor, fine motor development, hands, home, schoolSensory Seeker

Fine motor development is one of the areas that our Sensory Seeker needs work on. I think it is quite common in children starting school to need help to hold a pencil correctly. The Occupational Therapist thought that he is hyper-mobile in his hands and suggested types of exercises to strengthen them.

Things at School to help Fine Motor Development

To help his fine motor development at school he does activities such as threading, and using these tweezers to move small objects from one basket to another. Our Sensory Seeker has special scissors, which can be held by both himself and an adult. All the children work on their fine motor development by practising writing on white boards, first over the top of letters and then without. Well I am delight to say that our son is progressing really well. He can now write his name unaided (jut please ignore the fact that a few of the letters are backwards, small steps) even without the letters underneath.

Things we do at Home to help Fine Motor Development

At home helping him with his fine motor development has been largely through play. Now he is not putting toys into his mouth (so much) we have encouraged more small world play, with less chunky toys. This means he has to uses his fingers more to hold them.

Our Sensory Seeker really likes Superheroes and Villains at the moment. He is lucky enough that we have some in Lego form. Lego is just perfect for fine motor development and he loves changing the heads and bodies on the people, as well as building models. He is loving Lego even more since watching The Lego Movie.

We also have several Lego Superheroes sticker books for him. These are really good for his little fingers to get in and peel them off the book, and stick them where he wants them. He loves stickers of any type at the moment, and has them as rewards at school too.

Another favourite activity that helps with fine motor development is Playdough. I think it that Playdough is good for hand development in general, as well as imagination and mark making (amongst many many fantastic uses).

Of course all this play then helps with his fine motor development for school activities such as painting, writing, gluing etc – he is doing much better at holding things, and is less likely to use a grab hold, but still holds the very end until prompted.

We are encouraging him to do lots of colouring in to help with his fine motor development, and again finding pictures that interest him really helps.

Talking of keeping his interest, I bought some scissors that leave a crinkly pattern on the paper when you cut with them, and just let him free to cut plain paper how he liked.

It is important for his future development that we keep helping him build on his fine motor development skills, to enable to do things independently. With encouragement, he is getting much better at being able to handle cutlery and eat smaller pieces of food (such as raisins).

His diet remains fairly poor but I am happy that it is improving. We have discovered a love of pancakes, which he wants every morning! I am happy as they are egg, milk and flour, plus he eats them with bananas. This is also a great opportunity to help with his hands as he loves to whisk up the mixture.

Do you or someone you care for have trouble with fine motor development or your hands? Do you have any simple ways to help?

Personalisation in Practice – Supporting Young People with Disabilities through the Transition to Adulthood

March 4, 2014Reviewsadulthood, Disabilities, person-centred, Personalisation in PracticeSensory Seeker

Personalisation in Practice – Supporting Young People with Disabilities through the Transition to Adulthood

Personalisation in Practice is a book that describes how the right support into adulthood made the difference to Jennie, a young person with Autism and learning difficulties. Personalisation in Practice tells of the benefits of person-centred planning which ultimately led to Jennie making the transition from living with parents to living in her own flat. The author, Suzie Franklin who is Jennie’s mother, describes the early years, and the struggles to come to a diagnosis, before explaining exactly what person-centred planning is. Suzie Franklin talks us through Person-Centred Reviews, Circle of support and other steps that were made to ensure Jennie had an easy transition into adulthood.

Personalisation in Practice really provides insights and questions to think about in how people can help guide the journey of someone with disabilities into adulthood. It reassured me about some of the things that I have already done (for both my teen and youngest son).

What my sons with disabilities futures are going to be like, and how they are going to cope, have always been things I think about. Any help on what things can be done to help this transition into adulthood are always welcome, and Personalisation in Practice provides this. Our oldest son has Asperger’s Syndrome and is seventeen years old. He is doing very well academically, he has a part time job (in a familiar place) and is even beginning to socialise with friends. The biggest breakthrough for us is that his hygiene standards have improved, and a lot of his behaviours we are more and more attributing to his age as opposed to his disability. It provides us with so much hope for the future of our youngest and we hope that he is on the same path. Personalisation in Practice also has a lot of resources for advice for families, schools, providers and local authorities at the end of the book.

There are lot of personal touches to the book as Suzie Franklin lets us into their lives in order to help support others. I think that parents with children like Jennie will nod understandingly throughout the book. Such as Jennie being “honest” and saying what she thinks, not worrying what other people think. Some parts will touch their pain, their fears, and other parts will make them smile and give them hope for the future. I loved how positively Jennie was described, loving life despite any difficulties she may face.

ISBN: 9781849054430

Jessica Kingsley Publishers

I received a free copy of Personalisation in Practice for purposes of review. All words and opinions are my own.

Kryptonite Sensory Play with Superman and Doctor Octopus

March 3, 2014Play MattersKryptonite, sensory play, sensory seeker, SupermanSensory Seeker

Kryptonite Sensory Play

I do find that if my son has plenty of opportunities to fulfil his sensory needs throughout the day, it places him in a better mood and helps him sleep at night. The best way to get and keep his attention is to utilise his interests. Currently he is loving Superheroes and Villains, and we recently made a Batcave and dressed up.

Inspiration for Kryptonite Play

I got the idea for Kryptonite Sensory Play from an idea we used at Halloween with frozen spiders. Knowing that my son would love just a frozen lump of green coloured water labelled as Kryptonite. Plus I like how quickly water freezes too, if he mentions that he’d like to do Kryptonite Sensory play in the morning I can have a block made up for when he gets home from school.

The sun has begun to shine more lately, and I knew that the Kryptonite Sensory Play would be ideal outside (if not I would have done it in a nice warm bath). Coupled with one of his favourite superheroes (Superman) and villain (Doctor Octopus) he set to work on destroying the Kryptonite.

How he liked to Explore it

First he bashed it with his characters and noticed that it went all slushy. He loved the Sensory feel when touching it on the bottom of Doctor Octopus’ feet. I liked how not only did he get his sensory needs met, but it really helped his speech and language, as he tried to explain to me what was happening to the Kryptonite.

After he bashed it with his characters, and had a feel of the coldness (he loves cold), he then decided to use his feet.

Then he stamped and he stamped and he stamped. Until the Kryptonite was no more. This was great for his proprioception, as well as learning a bit about the science behind the ice breaking up. I am hoping that as we play this game more and more it will develop. Maybe using the characters more to tell a story.

Sensory Seeker Party with Reptiles

March 1, 2014Parenting, Play Mattersparty, reptiles, texturesSensory Seeker

Sensory Seeker Party Idea

Party planning can be difficult (see my party guide ), with lots of things to factor in. Who are the guests, what is your budget, will they be left, what can they eat, how will you entertain them? When it comes to your Sensory Seeker Party the first thing to think about is what will work for your child. I was really surprised to see how patient my Sensory Seeker was at a recent Wild Kids Reptile Party. In fact it wasn’t a party, it was a clever idea of a friend about us all chipping in to entertain our children in the school holidays – that it what such great value it was. We hired a hall and all bought a packed lunch. This is a good idea for a Sensory Seeker Party as there wasn’t food on view, until my Sensory Seeker could actually have it.

Sensory Seeker Party Suitable guests for Reptiles

Obviously you need to consider who your guests are. I could not see a Sensory Seeker Party with reptiles where there are a whole bunch of Sensory Seekers, as they would not cope in this scenario. Sometimes you need the attendees to be quiet – and those Sensory Seekers who like to make a lot of noise may find this very difficult. Our party had a wide range of ages and it suited them all. I am also not sure how well it would have ran with a lot of very small children – so I would imagine it would suit at least those of school age.

If the children did not want to hold the reptiles they could still just stroke them. The guests had the option for each reptile as to how comfortable they feel with them, and whether they wanted to hold or stroke them. A good Sensory Seeker party will make sure there is somewhere for the guests to go if they really do not like the reptiles, or a particular reptile.

Reptile Sensory Seeker Party Pros and Cons

It was great to see my Sensory Seeker loving all the different textures of the reptiles. This is one of the reasons I think that it would make an ideal Sensory Seeker Party. He had no fear of the reptiles and even wanted to hold the tarantula (which you have to be sixteen years and over to do).

I have to admit that my Sensory Seeker was much braver than me. I found the staff to be fully supportive, and very encouraging of those who were a little apprehensive. I was amazed at how well my son sat quietly, listening and waiting his turn. I think it is also that they come out to you – so you can arrange to have it in a familiar environment, or one that you know really suits your Sensory Seekers needs.

As a Sensory Seeker Party I can see that the biggest problem would be preventing hands going in mouths. The staff had warned the children not to do this and had hand sanitiser for at the end, but my Sensory Seeker kept trying to put it his hand in his mouth. This was simply resolved by me sitting next to my son, and keeping his hands clean with antibacterial gel.

About Wild Reptile Parties

Available throughout Gloucestershire, £120 for a one hour party for hands on educational interaction with some of the world’s most fascinating animals without the mess. Wild Kids Reptile Parties bring with them not only all the animals (including friendly snakes, frogs, tortoises, stick insects and leaving behind any you do not want to see), but the protective sheets and hand sanitiser.

For more information or to book a party please visit http://www.wildkidsreptileparties.co.uk/

This is NOT a sponsored post.

Blood Tests – Is this the end of the road to Diagnosis

February 25, 2014Personal Postsblood, Fragile X, needle, phobiaSensory Seeker

Blood Tests – The Next Stage

Now they have ruled out our son meeting the Diagnostic criteria for Autism they want to determine if he has something else: Something that can be determined by simply doing a blood test. I say that like it is the easiest thing in the World. I feel so selfish for wanting it to come back negative, but before you defend me it is not for the right reasons. You see it is apparent that our son does have additional needs, it’s the determining what. So a test coming back negative is just another barrier to helping find out what it is, so that the best course of action is taken for him. No the problem with the test coming back positive is that then they will want me to give blood too.

Giving Blood facing my Phobia

I could have refused, but I am not going to be the one to stand in the way of my son getting every bit of help and support he can. However, I did nearly collapse in the hospital when it was suggested (they kindly went and got me water). In fact even writing this is making my arms itch and my body feel faint – like I shall collapse. If you have not gathered I have a needle phobia. This is how our son started life. I was meant to have bloods taken at 34 weeks – but the midwife wasn’t available. I ended up having them when I labour (at 35 weeks). Magic cream, gas and air, very loud iPod, and my husband stroking my head, I SCREAMED the whole time. Lying down at least meant I couldn’t faint. See I can do it, when I have to, if I have to. And I do, have to.

Blood Tests what they mean for my little boy

CGH Array Analysis and Fragile X Testing the letter says. New terms, not both unfamiliar, I vaguely remember someone telling me he sounded like he could have Fragile X before. Do I dare look, search out the answers, or do I just wait?

His test is Thursday. Luckily my husband’s work have been amazing. And so has he. He has the day off to take him. My son, I’m sure, will be fine. Poor thing has had so many (not as many as a lot of children I am sure) blood tests and things. He is such a good boy. And then more waiting. Will I look in that time? And what if he is positive? What if I’m positive? What then?

No we shall wait, and just be positive, and not think about the blood tests, or the needles, and just stay focused on the happy little boy who is coming along so well.

Disabilities do they make the person?

February 19, 2014discussioncure, Disabilities, removeSensory Seeker

Many people do not like themselves, or their children, being labelled in terms of disabilities. I often hear people say that they prefer to say that my child has Autism as opposed to they are Autistic. But when faced with the question as to whether they would “cure” ( I prefer remove) the disability or not, the answer in my experience is often no. It seems that there is some kind of acceptance that the disabilities are part of who the person is, and if you were to remove the disabilities it would be like removing a part of that person.

People with Disabilities are special in their own right

I have to admit I can see how my children’s disabilities make them special, in a different kind of way to my children that do not have disabilities. They can bring so much warmth and happiness to the World, teaching us a thing or two. With my own son’s developmental delay he really has taught me the beauty of the small things in life (for example he is just zipping up his own coat and pulling the Velcro across on his trainers).

In many respects I can see how my oldest son having Asperger’s Syndrome has many advantages. I do not think the nastiness of some people is as obvious to him, which is beneficial to him as he’s not as easily hurt. As a parent I find that once we established the routines, the boundaries and the wants, that he is a pretty dam perfect teen. He is doing well and so very focused academically – it’s all very black and white, he is meant to try hard to get where he wants so he does. I am lucky in that I do not to have to worry about him doing things like NekNomination, because it is not a safe kind of behaviour.

Also my children without disabilities have to be aware of the additional needs of their siblings makes them special too– more tolerant, patient, kind, caring and understanding. So I can see the argument for not taking away the disabilities.

Reasons for taking away the Disabilities

Having to anticipate seeing again some of what my oldest son has been through, when he was younger, with the fresh eyes of his youngest brother makes me think I’d rather not have to go through it again (for me or for him). From the very basics of feeling I have to justify my parenting choices, to wondering whether he will ever properly be able to communicate his wants and needs to others.

If the disabilities could be removed then the fear for the future would be less (I mean every parent worries about something, don’t they?). Just wanting to know that he stands a good chance of happiness when he is older? Will he be able to learn enough, will he ever be able to take care of his basic needs (diet/toileting, keeping himself safe), it would mean him not being vulnerable and misunderstood by people. Not wanting him to be excluded and different (even at this basic level of not being able to access the curriculum without support). These are the very reasons I fight for every bit of support to help him find as normal way as possible through life’s pathway.

Hope for the future with Disabilities

My sons’ disabilities are not going to go away, I just want to add that I am hopeful for the future. Seeing how far my oldest son has come, with the right support is amazing. My youngest has even more support than my oldest did and is coming on in leaps and bounds. But if I could make it so that they did not need that help then I would. I guess it also depends on what the disability is, but to me taking away the disability does not take away the person – you would let your child have their tonsils taken out if they kept on having tonsillitis – wouldn’t you?

So do you think that disabilities make the person or would you remove them if you could?

STAARS Project Early Detection of ASD/ADHD in Infants

January 29, 2014Research and CharitiesADHD, ASD, Babylab Birbeck STAARS Project, Dr Emily Jones, Kim Davies, Professor Mark Johnson, Professor Tony Charman, STAARS ProjectSensory Seeker

Babylab Birbeck STAARS Project – Siblings of those diagnosed with Autistic Spectrum disorder and/or ADHD.

When you have a child who has been diagnosed on the Autistic Spectrum and/or ADHD (or many other disabilities), for me, you cannot help but wonder whether their siblings will have it too. You may know how hard it is to fight for the diagnoses, the intervention, the support, and so you may want to start the process sooner rather than later. When my oldest son was finally diagnosed as having Aspergers Syndrome, at 10 years old, we saw what a marvellous difference the right way of dealing with him made, and this highlighted to me the importance of early intervention.

At that time we never had any worries about his brother having it too, as their differences were what alerted us to the fact that there was something more than just him being naughty. You see that is the fight we had come up against, him being told he was evil and that it was down to rubbish parenting. The boys who have been born since the diagnosis, we always found ourselves watching, and questioning whether they had it too. It was at two years old that I was convinced that our youngest son needed more support than his peers, and was determined to get all the help I could for him. I feel I have been really lucky and we have had a lot of advice and support when we needed it. Saying that he has only recently been diagnosed (as NOT having Autism) and now we await a blood test to determine if there are other underlying genetic conditions (he is now almost 5 years old).

I would have done all that I could (and have done) to ensure that he gets the right diagnosis, as I feel that will lead to the right help and support which can make such a huge impact on his future. Therefore, I was really interested to hear about BASIS (British Autism Study of Infant Siblings) a study at the Babylab, Birbeck, University of London, which began 8 years ago. This is major new research into the early detection of Autism, which has lead on to the STAARS Project (Studying Autism and ADHD Risk in Siblings), lead by Professor Mark Johnson and his team.

Babylab Birbeck STAARS Project – The link between Autism and ADHD

It has been found that there are processes in common for both ASD and ADHD; STAARS Project is the first of its kind in the World to study the two together. Studies suggest that between 25-83% of people with Autism also show symptoms of ADHD. It is known that 40% of children with ASD meet the criteria for ADHD – and this is now allowed on the DSM-V. With ASD usually being diagnosed at around ages 2-3 years old but ADHD being rarely diagnosed until school age and more commonly it is ages 6, 7, 8 or even secondary school).

The STAARS project looks at siblings who already have a diagnosis of ASD and/or ADHD as they are more ‘at risk’ as there is up to a 20% chance of having a sibling who will also have a diagnosis. These children will be studied using non-invasive methods. At the end of the 3 years children will be assessed for symptoms of autism and ADHD by a team led by Professor Tony Charman, examining the earlier data. It will be discussed if it is felt that they also have ASD and/or ADHD (if they have not already being diagnosed).

Babylab Birbeck STAARS Project – Participants needed

The study is very scientific and they are always considering extraneous variables (such as sensory seeking and avoiding, now that they have been added to the DSM-V for the diagnosis of Autism. They are looking for 100 participants with a child already diagnosed with ASD and 100 participants with a sibling already diagnosed with ADHD in the UK, with further sampling from Europe, and combining with data in North America.

The sibling to be studied would be 10 months or under, with a commitment of coming in possibly 6 times over 3 years. There would be help with developing social interaction/play and to develop parenting relations in the lab. I know myself how hard it is to play with someone who lacks attention and very little interest in what we are meant to be playing.

Babylab Birbeck STAARS Project Methods Used

Face recognition
Optimal imaging (NIRS – changes in the blood)
Eye Tracking
EEG (small voltage changes in the nerves)
Cheek swab.
Heart rate and perspiration.

Babylab Birbeck STAARS Project The Parent’s Point of View

At the launch of the STAARS Project I got to meet one of the parents of the study Charlotte Warner, she is very supportive of the study and could not emphasis enough how important she felt it was, how well she’d been treated and would recommend others to participate. Charlotte is now involved in The Rise School which aims to “educate and support children and young people with autism aged 4-19 to access a broad and challenging curriculum alongside mainstream pupils.”

Babylab Birbeck A Friend’s Account

Of course if you personally know someone who has been involved in something you are more likely to trust what they say so I am going to leave you with the account of one of my friend’s opinions of her experience of the study. She wishes to remain anonymous but is happy to answer questions that may arise.

She heard about the Babylab from her local NAS, already having a son diagnosed on the spectrum and another with diagnosed traits (though she believes he has ASD). After looking on their website, she e-mailed them and luckily rang them up (they’d had trouble with their e-mails). It took around 45 minutes to answer questions on the phone. They arranged a visit to go to the Babylab ASAP.

They explained that everything was non-invasive and that if the baby signalled that they wanted a break then they would have one. The baby had to wear a romper suit and hated it. But the staff listened to the mother and allowed her to take it off the baby as soon as possible (which proved successful and settled her crying). When the mother sensed that the baby did not like a particular room, or felt it was best to stay in a room or change rooms, then she was listened to. During the visit the baby watched TV (with an eye tracker) and was required to play games. The mother filled in a sensory questionnaire about her baby, a sleep diary and other questionnaires about the baby’s development so far.

Both mother and baby were made to feel at ease and their needs taken into account. They were the only ones with their team. Everything was catered for – free nappies and wipes, and everything was paid for – travel (by train), hotel (as was too far to commute) and food. The baby received a t-shirt for attending the workshop. The baby was 6 months and a week at the time and has been asked to return again at 10 months old.

Getting involved with the STAARS PROJECT

Families are needed for further research, If you have a child diagnosed with Autism and/or ADHD, and are pregnant, or have a baby under 10 months old then contact:

Janice 0207 079 0761

staars@bbk.ac.uk

www.staars.org

The STAARS Project Research Team

*Professor Mark Johnson – is an MRC Scientist, Fellow of the British Academy, and Director of the Centre for Brain and Cognitive Development at Birbeck, University of London. Professor Johnson is an internationally renowed expert in the field of developmetal cognitive neuroscience.

* Professor Tony Charman – who co-leads the study, is Chair in Clinical Child Psychology at the institute of Psychiatry, King’s College London, and is an expert on early autism.

* Dr Emily Jones – winner of this year’s L’Oreal Women in Science Award, is co-ordinating the European-wide component of the STAARS project.

* Kim Davies – British Autism Study of Infant Siblings (BASIS) Coordinator, works closely with the families involved in the project.

The STAARS Project Funding

Funded by the UK Medical Research Council, the European Union and the British Autism Study of Infant Sibling (BASIS) fundling led by Autistica.

I do not take responsibility for the accuracy of this information, please contact the Babylab if you wish to ensure that details are 100% correct.