Clothing - Raising Awareness

Having seen a tweet from @SquarePegCIC on twitter about hoodies and t shirts using fashion to educate about special needs, some of which are hidden as not every disability equates to being in a wheelchair.  When we took a look at the site there was no yellow option, so J was not interested.  Following a twitter exchange, Lauren at Square Peg Clothing agreed to look into the colour options with her suppliers.  It was great to hear, a few weeks later, that they were able to offer yellow hoodies and J was then keen to try one. 

There are t shirts and hoodies available, in child and adult sizes with various slogans.  J had a look at the website and all that was on offer.  Athough he liked "You can't get my designer genes just anywhere", he chose the message "Somewhere over the spectrum".  This was because he likes the concept of spectra (both electromagnetic and also the 'autistic one') as well as the use of the linking jigsaw pieces. Jigsaw pieces are used by Ehlers-Danlos Support UK (which is another of his diagnoses) in their message about the various symptoms and types of EDS.


In the pictures you can see that J was very keen on the top... in fact, since it arrived, he has worn it every day!   The colour of the hoodie in the pic on the left (with J's pal Peppie in) is the best for demonstrating the shade of yellow it is - a deep sunflower, "happy" colour.

 
Today at his aquatic therapy session, which is held in a special school, J was delighted to get a couple of lovely comments from the staff and his favourite physio particularly liked the shade of yellow saying it had brightened up her day.

Initially, we had talked around the topic of whether J wanted to bring attention to himself with the slogan and came to the conclusion that people stare and question anyway so they may as well have something nice to look at when doing so... it also opens up J's lines of communication as gives him a 'topic' to use as "chit chat" which is part of his Speech and Language therapy.

The photo to the left is J demonstrating the hoodie part...  he says it's lovely and soft and keeps the chills out.   He also likes the 'pouch' on the front (which can be seen best in the photo at the top) as he can snuggle his hands in and keep them warm.

J is a slight 14 year old and we were sent a 12-13 (34" chest) hoodie by @SquarePegCIC   Taking a parent's view, the fabric is lovely and thick (80% cotton, 20% polyester) and washes at 30ºC... amazingly, given J's usually messiness, it hasn't had to be washed yet.  Hopefully, it will still look as good once it's gone through the machine.

Thank you Square Peg Clothing, this top is a great success! 

Disclosure - J was sent a hoodie by Square Peg Clothing, the opinions are our own and we have not been paid for this post.

Tinnitus - it's not just ringing in the ears!

J's experiences with hearing problems (hyperacusis and tinnitus) were acknowledged, and addressed, during 2011 when he finally got to the Nuffield Speech & Hearing Centre in London.  As it's Tinnitus Awareness Week in the UK this week, we wanted to cover his experiences with tinnitus.  

As a young child, J suffered with intermittent glue ear and used to say things which, looking back, seem to indicate tinnitus has been something he's experienced for a long time. For instance, when in the car,  he often asked if there was a motorbike behind the car when there wasn't, he'd say at night that he could hear bubbles popping and he'd often not notice he was being talked to.  His hearing was tested numerous times but it always came back as being 'normal'.  Recently he asked us why the toilet was flushing (it wasn't) when we were sitting reading in silence - it was astonishing to realise (yet again) just how loud the noise/sound J hears as tinnitus can sometimes be!

Once diagnosed, we were surprised to learn the range of sounds that can be 'heard' when someone has tinnitus.  J, once told he was not alone and that his problem had a name, was then able to express more fully the severity of his tinnitus.  He explained that at quiet times it could be overwhelming, that he could ignore it more easily if he chatted to himself and it wasn't always the same sound or volume. 

Many times, J has said "yes" or "what" when noone's said anything.  Now we know it's likely to be his tinnitus that's making him think someone's talking to him.  He also likes to have a small amount of background (ambient) sound as the noise in his head is overwhelming when it's completely silent.  He's explained that trying to concentrate on what's being said, or a task, when the tinnitus volume is high is very challenging (and tiring) for him.  

Regarding the varying sounds and volume levels of J's tinnitus, we have had a few events recently that have allowed us some insight into what he has to handle.  For instance, whilst out on a visit to a shop one weekend before Christmas, there were some Bose noise cancelling headphones in the electrical department that were available to try.  B has been 'angling' for Bose equipment for YEARS so was quick to give them a go... as soon as he tried them, he said to me "you must have a go, they're amazing".  So, I put a pair on and was suitably impressed at the reduction in background noise of the department store - in fact, it was barely audible - and this was just with the headphones NOT playing any music.  We were both astonished and applauding the 'amazing' non-sound and J had a go... well, his reaction could not have been stronger.  He grasped his ears, blanched and yanked off the headphones - it was as if he'd been burnt - his reaction was extreme and instant.  He yelled "I DO NOT LIKE THOSE" as he ripped the 'phones off. Noise cancelling just allowed him to hear ONLY the sounds in his head - his tinnitus - and it was overwhelming for him.

J wearing bone conduction headphones

Bone conduction headphones

Once home and, as is the norm here, trying to think of methods of helping J, I tweeted a twitter pal (the most lovely Vicki who tweets as @KidsAudiologist) and asked if she thought bone conduction headphones would work. As luck would have it, Vicki was at a conference with loads of other audiology bods and so she replied saying she'd ask around.  As usual, she was as good as her word and soon replied to say the people she'd asked thought that bone conduction headphones would be worth trying.  So, having searched online found Aftershokz offered some... as these are stocked by Action on Hearing Loss here we thought they'd be worth trying out.  We ordered online and J tried them out - saying "wow I can hear the music's words" and, even better, he wasn't shouting as he spoke.  He said it was "a bit odd" wearing the headphone on the front of his ears but this was much better than anything being in his ears.

Some of the solutions discussed during treatment in London had been white noise machines, special pillow speakers and ear defenders - all on offer here for 2014 Tinnitus Awareness Week.  J already has ear defenders and likes to have music playing in the background when his tinnitus is 'filling my head' as then he can concentrate on that instead. 

As J doesn't have hearing loss, finding information and support when we first started looking was quite a challenge.  Also, his tinnitus is not due to listening to loud music... however, it's no less irritating for him at times but he does deal with it in a matter of fact way (he likes facts) and did some drawings about it a while back that seemed to help him.   

J's thoughts on tinnitus are that it is "part of me, varies quite a bit and is sometimes really annoying" but he also says "now I know about it, I can think of other things and it helps me to cope".  He recently told his Speech and Language Therapist that it's like "an untuned radio - interference" and when it's really loud, that he can't block it out.  Stressful situations worsen his tinnitus and this is something we've noticed can be improved by using the techniques from his therapeutic treatment. 

Being aware of tinnitus and accepting it DOES exist has allowed J to discuss, learn about and understand methods that work for him in controlling the impact tinnitus has on his life.

J's tinnitus level today

This has been a much longer post than intended and we had hoped to include diagrams and more pictures but they're difficult to find so J did his own - this represents his tinnitus as it is right now!

Articles and organisations

There is a detailed description of the type of therapeutic counselling J undertook on pages 26 to 29 in this issue of Audacity (professional audiology publication) and it also contains another article on Tinnitus in Children on pages 30 and 31.

The British Tinnitus Association has a useful website here and we found these pages useful - About Tinnitus and Tinnitus in Childhood