Communication: A Special Saturday Post
Posted: November 26, 2011 Filed under: #SpecialSaturday | Tags: communicatioon, Makaton, non-verbal, objects of reference, On-body signing, siblings, special needs, specialsaturday, verbal Leave a comment »Prior to having little H, I taught children with autism for many years, some severely autistic, non-verbal children amongst them. I have been asked countless times “Will he ever speak?” and whilst no-one can know for sure, with each passing year the chances decrease, though I have known a child who spoke his first words at the age of 11. I learnt that there is so much more to communication than words, it is a highly complex process. One child I taught had a vast vocabulary, yet had no idea what the words meant. He was echolalic, simply repeating phrases he had learnt. Whilst many times he used words appropriately – “Good morning” for example, it was impossible to have a conversation with him. He simply didn’t understand. He was no more able to communicate than a non-verbal child despite appearing to be at an advantage. Words to him were sounds and held no communicative intent.
There are so many stages that a typically developing child goes through before they use words effectively to communicate. First they must realise they need to communicate, that people don’t automatically know their thoughts – I taught many very able, verbal children with autism who still struggled with this concept. Young babies communicate initially through crying to express hunger, tiredness and discomfort and mothers can often differentiate between the different types of cry and work out what their child needs. This communication quickly progresses, and even whilst still very young, babies begin to learn the subtleties of turn taking in conversation and will babble in response to a parent, beginning even to use some intonation in their sounds. Eye contact is also a key feature in communication, verbal or otherwise.
There are many forms of non-verbal communication; eye gazing, that is looking towards a desired item, pointing, taking a parent to an item or placing it in their hands – with for example something that needs to be opened – are all effective ways of communicating desires without speech. Then there are the more obvious, recognised methods of non verbal communication, such as PECS, Sign language and Makaton.
There are so many methods of communicating, that I often thought parents placed too much emphasis on verbal communication and speech. Yet now as a parent I know how desperately you want to hear your child say “Mum”.
As a parent I have heard myself ask “Will he ever speak?” and been devastated by the response.
I cling to the hope that Little H will one day learn, but in the meantime we support his communication in other ways. His vision is poor so Makaton or other basic sign language isn’t really appropriate. Even if it were, he has very little controlled movements so would be unable to use the signs himself. His elder brother, Cheeky (now nearly 3) used baby signing when he was younger. I’d like to clarify, I’m not a ‘hippy Mum’ or anything, but he was having such terrible tantrums – I mean, banging his head on the floor in frustration kind of tantrums – because I couldn’t understand what he wanted that it seemed only fair to give him some tool of communication before his speech developed. It worked amazingly well and I was interested to see that even when he began speaking at around 13 months, that he would revert to signs when tired or anxious, once repeatedly using the sign for ‘finished’ when he was scared on a boat trip, despite being well able to talk at this stage. It is sad then, at nearly two years old, his younger brother is nowhere near achieving the level of communication that Cheeky had at 9 months. Instead, we use something called ‘on-body signing’. It’s a signing system for children with visual impairment and moderate to severe developmental delay. They can feel the sign as they are said, so are not relying heavily on vision as with other signing methods. It’s quite simple – the sign for hello is shaking his hand, goodnight is tracing your fingers down his face – as if encouraging him to shut his eyes. We also use objects of reference – everyday items that he can hold, and hopefully see, that indicate what will happen next: a nappy when I’m changing his bum, a wet flannel at bath time, keys when we are going out. I also try and use song to indicate time of day as he loves music. We have a ‘Good Morning’ song Cheeky and I sing each day when it is time to get up and I use the same lullaby each night at bed time. I am not sure how much of these cues Little H is aware of or picking up on but hopefully with time he will begin to recognise the pattern.
And how does Little H communicate with us? Well, bless him, he has THE most wonderful smile which indicates he is happy, and a right cheeky chuckle that makes us all laugh too. When in pain or discomfort he cries and when hungry he has this funny little tongue roll thing but I think that might be involuntary. It is a shame that he is currently being NG tube fed as his most effective and intentional communication so far has always been when eating. He very definitely will turn his head away and push his tongue out if he doesn’t want something – as if to say “There is no way you are putting THAT in my mouth Mum!” He also makes a funny shouty noise if I’m not feeding him fast enough as if to say “Come on Mum, I’m starving!” It’s hilarious because it’s a really cross sounding shout too. It’s a shame that nothing else so far has elicited the same level of intentional communication but hopefully after the winter, if his health starts to pick up and we manage longer than a week between chest infections then we might be able to start feeding orally again. At least I know though that he has the capacity for intentionally communication though and that is a start.
And maybe, just maybe, one day he’ll be able to look me in the eye and say “I love you Mum” but until then, we’ll keep working on the other methods.
All they want for xmas . . ideas for presents for your child with additional needs
Posted: November 7, 2011 Filed under: #SpecialSaturday, General Info | Tags: christmas, disabled children, present ideas, sensory, SWAN UK Leave a comment »Last weekend the specialsaturday community were discussing ideas for christmas presents, you can check out their discussions by clicking here
One common theme seemed to be how parents can struggle to think of ideas so here at SWAN UK we have decided to start our very own santa’s wish list!
Below you can find links to some of the suggestions made at the weekend plus a few other things we have discovered – we will keep this list open up until xmas so if you have other ideas please add them in the comments below or email to SWAN@geneticalliance.org.uk so we can add them on.
(Please note that this does not mean SWAN UK endorses or recommends any of these items. We also cannot guarantee that the links provided will take you to the cheapest version of this toy so if you see something you want to buy you might want to check if you can find it cheaper elsewhere)
DVD’s
Makaton nursery ryhmes DVD – http://amzn.to/rqsaJt
Personalised DVD’s – your child stars in the animation – http://bit.ly/8b9q2i
Mr Tumble – http://amzn.to/t1srO6
Books
Adventure books personalised to your child www.myadventurebooks.co.uk
Talking toys
Old school talking teddy ruxpin – http://bit.ly/rZ3W59
Bouncing tiggers http://amzn.to/smW3MB
Bubbles / bubble machines
http://bit.ly/ufeyWR
bubble pipe – http://bit.ly/vJOpEf
http://bit.ly/urfXmm
http://bit.ly/sAh82b
http://bit.ly/vVcI7V
Ball pools
100 coloured ball pool balls – http://bit.ly/kVUlv3
Ball pit – http://bit.ly/rRoonb
Hello kitty sensory play den – http://amzn.to/sr69eT
Blanket den frame (make a sensory tent) – http://bit.ly/uJGqtw
Hopper horse – http://bit.ly/vqgdOR
Supportive swings – http://bit.ly/t91mjQ
Chewable toys
Bracelet – http://bit.ly/teJrhl
Jewellry - http://bit.ly/t7zVFV
Tubes – http://bit.ly/nbDDD6
http://amzn.to/shuJIL
Pencil toppers – http://amzn.to/thpiYF
Retractable key chain – http://amzn.to/vyi8ep
Lights / visual
Colour mixing glasses – http://bit.ly/ruAcjo
LED spinner - http://bit.ly/t9Ijzw
Timer liquid – http://bit.ly/spl2Lh
Glow in dark bracelets – http://bit.ly/t7dKyL
Foam flashing baton – http://bit.ly/w2NPSp
Rainbow spring – http://amzn.to/tKluxC
Torches / projectors – http://bit.ly/sRcNGJ
Spinning bees – http://bit.ly/vOOBVW
Wind spinner hot air ballon – http://bit.ly/t5Opea
Starfish – http://bit.ly/tvr0r7
Sand timer – http://bit.ly/sWV5sH
Remote colour changing LED light bulb – http://bit.ly/cHCHQU
Plasma ball – http://bit.ly/sragIq
Cosmic disco ball – http://bit.ly/sQXSUg
LED fan – http://bit.ly/uOsNWi
Fibre optic wand - http://bit.ly/taO5Ii
Flashing glitter ball – http://bit.ly/upPKLp
Light up animal spinners (with or without sound) – http://bit.ly/rpyO1g
Flashing LED spinning top – http://amzn.to/syCD4x
Underwater disco light ball - http://amzn.to/u12TGD
Stuff to encouraging blowing etc
Warbling water bird – http://bit.ly/rMp280
Blow duck quack – http://bit.ly/sr3yet
Glow straws – http://bit.ly/uorm1N
Mini windmills – http://bit.ly/tOlDOF
Bath/ water toys
Underwater disco light ball - http://amzn.to/u12TGD
Sealife flashing toys – http://bit.ly/v0zY4Y
Porkupine puffer fish – http://bit.ly/uZmXaC
Sensory bombs (‘weight’ the water in the bath) - http://bit.ly/ueYR8X
Feel / touch/ tactile
Science putty – http://bit.ly/rwYGBm
Squooshy ball - http://bit.ly/u5Rrvt
Natural brushes – http://bit.ly/vCKOyE
Hairy fidget toys – http://bit.ly/w0J5KP
Feathers - http://bit.ly/vlWYpq
Sensory pillows – http://bit.ly/sYd2hW
Space blanket – http://bit.ly/vr2M3k
Squidgy uv octopus – http://bit.ly/u9VrgI
Bean bags - http://bit.ly/w3mgjt
Noise
Giggle sticks - http://bit.ly/rBP2Vu
Wooden rainbow sound blocks – http://amzn.to/uFvkcN
Pop up books with sounds – http://bit.ly/v6TQs9
V-tech toy talking laptop – http://bit.ly/tY2dRV
Dancing and singing xmas trees – http://bit.ly/shw6uN
Dancing, singing, handstanding snowman – http://bit.ly/vhnsQN
Flashing LED tamborine – http://amzn.to/sSbkXT
Wiggly giggly ball – http://bit.ly/uZPnR6
Musical hands mat – http://amzn.to/t9KaqC
Dancing frog – http://bit.ly/sBP36V
Sound cubes – http://bit.ly/sXgV27
Jibber jabber hammer - http://bit.ly/vS2OpE
Football rattle – http://bit.ly/vVEvtG
Finger ring bells – http://bit.ly/rreb8W
Animal paw (makes noise) - http://bit.ly/tuIDey
Jingle sticks - http://bit.ly/snWy1r
Humming spining top – http://bit.ly/uVb7A2
Help with fine motor / motor skills
balancing board – http://bit.ly/tvUvil
Figure of eight marble run - http://bit.ly/tlyt4x
Jumbo tweezers – http://bit.ly/ugaM4c
Climbing ladder – inside or out – http://bit.ly/uJGqtw
Activity and sounds house – http://bit.ly/v9WInk
Threadbale beetles – http://bit.ly/syHfdB
Mega building blocks – http://bit.ly/sjiJlj
Threader cheese – http://bit.ly/vvUEyu
Mirrors
mirror sheets (cut to any shape / size) – http://bit.ly/tW732x
Mirror bookcase – http://bit.ly/ur34w9
Infinity mirror corner – http://bit.ly/vGCGvs
Spinning marble mirror – http://bit.ly/w2Dsp3
Mirror ball - http://bit.ly/rUseoT
Smells
Fruity smelling balls - http://bit.ly/tMQflT
Smelly stickers – http://bit.ly/tMQflT
Smelly books – http://bit.ly/teTr0l
Aromatherapy squidgy dough – http://bit.ly/rHPWQ9
Weighted blankets / clothing
Sensory bombs (‘weight’ the water in the bath) – http://bit.ly/ueYR8X
Sensory Toy Website
special needs toys / sensory toys websites
http://www.specialneedstoys.com/uk/
http://www.sensorytoywarehouse.com/
Sensory stocking fillers
under £1 http://bit.ly/vijkrF
£1-2 http://bit.ly/vhHL27
£2-£5 http://bit.ly/rqx6g1
£5-£10 http://bit.ly/sRKQjy
Makaton resources – http://bit.ly/s3EvrR
Ideas from other parents
http://dreammom.blogspot.com/2006/12/best-toy-gift-ideas-for-special-needs.html
http://jgregorysharingsstories.blogspot.com/2011/11/special-saturday-christmas-gifts.html?spref=fb
http://ninjakillercat.blogspot.com/2011/10/cheese-autistic-motor-skill-toy-review.html?spref=tw
http://www.aspieinthefamily.com/2011/11/specialsaturday-festive-edition/
http://www.stuffwiththing.com/2011/11/christmas-present-ideas-for-heidi/
http://www.stuffwiththing.com/2011/11/christmas-present-ideas-for-annie/
http://www.savette.com/reviews/john-crane-welcomes-sevi/
http://www.savette.com/special-saturday/specialsaturday-christmas-gift-guide/
http://looking4bluesky.blogspot.com/2011/11/what-i-want-for-christmas-is.html
http://jontybabe.blogspot.com/2011/11/nablopomo-day-5-special-saturday-double.html?spref=fb
http://zootrain.blogspot.com/2011/11/special-saturday-christmas-gift-ideas_05.html
http://www.savette.com/reviews/squashblox-review/
http://www.passiton-sen.co.uk/shopping
#SpecialSaturday – Favourite Memories
Posted: September 23, 2011 Filed under: #SpecialSaturday Leave a comment »Last week we asked you to share your most embarrassing moments and there were some great tweets coming through -
This week we want to know all about your favourite memories so when saturday comes around get online and tell us all about those special memories of your child that you will never forget – twitter users don’t forget the #hashtag!
If you need reminding about what #specialsaturday is all about and where it came from follow the links below -
Special saturday is the brainwave of mum Wendy Hirst to raise awareness of the needs, feelings and accomplishments of children and adults with special needs or autism.”
You can read more about its origins here – http://bit.ly/kUCNqK and add a twibbon to your profile picture here http://t.co/JyILZSL
You can also read last week’s posts here http://bit.ly/jWsAwb
If you follow this link it will take you to the Twitter page with all the #specialsaturday tweets http://bit.ly/kl8Ry8
Numbers are rapidly growing on the Facebook group so come join in http://on.fb.me/l0ctBE
Check out the new Special Saturday blog here http://specialsaturday.org
The number of special saturday bloggers is continuing to grow each week, make sure you check them out -
Sally Wilson Allen = Lexilil = http://lexilil.wordpress.com/
Max Rulestheworld = Love that Max and To the Max = Ellen Steidman = http://www.lovethatmax.com/ and http://www.parents.com/blogs/to-the-max/
Marianne Russo = Life Unexpected = http://thelifeunexpected.com/
Sarah Kaye = Sarah Kaye Home = http://sarahkayeshome.com
Leah Kelley = 30 Days of Autism = http://30daysofautism.wordpress.com
Tessa Hazelton Jordan = apples and autobots = http://applesandautobots.blogspot.com/
Katrina Moody = Kat’s Cafe = http://www.katscafe.org
Jonty Babe CW = It’s a Crazy World = http://jontybabe.blogspot.com/
Sharon Jacobsen = Being Paul’s Mum = http://beingpaulsmum.blogspot.com/
Jane Gregory = Sharing Stories = http://jgregorysharingsstories.blogspot.com/
Wendy Hirst = Savette Gazette = http://savette.com
Samantha Dean = Sweet Deanie’s Musings = http://sweetdeanie.com
Katie Kitchen = The Life and Times of Team Kitchen = http://katekitadventures.blogspot.com/
Jane Danzi = This is No Ordinary Kid = http://thisisnoordinarykid.blogspot.com/
Aaron Devries = Just a Daddyo = http://justadaddyo.com/index.html
Vander Browning was Peglar = Vander Hissy Fit = http://vanderhissyfit.org
Rob Gorski = Lost and Tired = http://lostandtired.com/
#specialsaturday – what has your little one done to embarrass you?
Posted: September 16, 2011 Filed under: #SpecialSaturday Leave a comment »So it’s almost here again, our favourite day of the week!
This week we want to know all about what embarrassing situations your little one has got you into.
You should all know the score by now, this saturday get online and join in the growing number of parents around the world blogging, tweeting and facebooking to share the joy and delights of their children with special needs (if you are a twitter user please remember to use the hashtag #specialsaturday)
If you haven’t already why not check out some of the amazing posts from last week by visiting the special saturday website http://specialsaturday.org/
Special Saturday: How my child has changed me
Posted: September 15, 2011 Filed under: #SpecialSaturday | Tags: #specialsaturday undiagnosed, disabled children, special needs, SWAN UK Leave a comment »If you had told me 18 months ago that I would give up a job I loved to be a full time carer for my son, I would doubt you were telling the truth. Now I ‘earn’ Carers allowance each month and know that leaving work is the best decision I ever made.
If you had said to me 18 months ago that I would become a dab hand at tube feeding, I would never have believed you. Now I can do it with my eyes closed.
If you had told me 18 months ago that I would have the strength and courage and determination to challenge the opinion of Doctors and Paediatricians, I would have thought you had got me mixed up with someone else. Now I trust my instincts and know that whilst I may not be a medical professional, I AM an EXPERT in my son’s needs.
If you had told my 18 months ago that I would make new friends with total strangers through the internet, I’d have been insulted. I’ve enough friends already – surely only loners and losers make ‘cyber friends’? Now I have a near army of ‘special needs mum’s’ through Swan and Unique and facebook and twitter, who I can call upon, any time, day or night, who understand my worries and fears; who can answer the silly questions; put my mind at rest and really rejoice in the small steps and achievements along the way.
If you had told me 18 months ago that I would regularly perform basic life support on my own child, I would have gasped in horror! Surely no-one could do that? And here I am, 18 months later, regularly resuscitating my son.
18 months ago, I could never have imagined the life I lead now. To feel so vulnerable and yet to appear so strong. To feel such love and to simultaneously feel such fear. To plan so far ahead and yet live day to day. To feel at times happier than I have ever felt and yet also so very very sad. To use words like life limiting and life threatening and hospice in day to day conversations and yet still feel truly blessed.
My wonderful, beautiful, special son has brought such joy into my life and in just 18 months has taught me so much. He has changed me in a way I would never have thought possible and at times I don’t recognise myself.
#specialsaturday : what is your child’s greatest achievement?
Posted: September 2, 2011 Filed under: #SpecialSaturday | Tags: children, delayed development, disabled children, specialsaturday, SWAN UK, undiagnosed, unknown diagnosis Leave a comment »Last week #specialsaturday was all about the funny things your child has done or said, there were some fantastic posts including . .
“A few years ago I had to visit london and left my son with my sister he was nearly 12 i was only gone the 1 night and even caught an earlier train home i went to pick him up and my sister looked wrecked and smoked about 10 tabs in 10 mins. She was nearly cryin and kept saying sorry it turned out that she gave him safety scissors and he’d cut his hair on top and his fringe then cut her washing line with washin and blamed her cat.To keep him busy she’d gave him paper which he cut up in perfect little squares and told her it was snowin in the sittin room she was still finding bits wks later i could help but laugh when she but he was really quiet i told her never trust him when quiet unless he was asleep.To which she nearly shrieked sleep he was up at 2.30 shouting pile on top before he squashed her”
“Last year just before Christmas I bought some tim tams (Chocolate coated biscuits) as a special treat. We shared them out among the family after dinner one night and I put the remaining 3 in the freezer for my husband to have with his coffee later. When Hubby went back to get them out they weren’t there so we immediately assumed Murray had eaten them and we would find the packet in the back yard in the morning, but when I went out there I couldn’t see it. I thought no more about it and carried on with my day. Later when I went to the pantry I saw the cookie jar sitting on the bottom of the pantry with the lid off and the empty tim tam packet next to it. Murray must have figured that since he was allowed to help himself to the cookie jar it would be okay to eat the tim tams if he put them in there first LOL”
This week is all about greatest achievements so let’s get some serious celebrations going on – big or small we want to hear about it . .
you know the drill by now, when saturday comes get online, get loud and get proud and tell us all about your child’s achievements.
For all you twitter folk out there make sure you remember to use the hastag #specialsaturday
To read previous blog entries by the #specialsaturday community and find out more about it’s orgins visit www.specialsaturday.org
Make sure you also check out the growing community on facebook – www.facebook.com/specialsaturday
Sharing Laughter
Posted: August 31, 2011 Filed under: #SpecialSaturday | Tags: children, chromosome, disabled children, laughter, specialsaturday, swan children, syndromes without a name Leave a comment »The theme for Special Saturday last week was “funny things our special needs kids have said or done”.
My son is very funny. Sometimes it’s unintentional – for several years when he was younger he believed the Daleks battle cry was “Lem-on-ade” – or caused by him not quite understanding something or taking things too literally. When he heard the expression “Throw the book at him” he couldn’t stop laughing – he took it literally, and wanted to see policemen trying to hit people with books! Sometimes it’s down to his own sense of humour – although as he’s reached the level now where bottoms, breasts and bodily functions are hilarious to him that’s not always laughter we share! Often his own little comments or asides are funny – “What am I like?” if he realises he’s misunderstood something.
He learnt at a young age to try and turn his problems into comedy – pratfalls to get a laugh are better (and easier) than trying and failing at something physical. It’s a technique he uses in PE a lot, although we’re trying to stop it, as it’s far better for him to keep trying even though it is harder for him than his peers.The problem is he hates it if people laugh at him when he doesn’t mean them to, so he’d rather control the laughter by doing it deliberately wrong, than risk trying hard but getting it wrong anyway and getting laughed at for failing.
His laughter is infectious, and frequent. He loves to share things he’s found funny. It’s great to be able to laugh together as a family.
This post was taken from http://lexilil.wordpress.com/
































