Hearing problems...

Over four years ago, we waited months for J to be 'seen locally and failed' in relation to his hearing problems.  We were told this was necessary and we had to be told they could not assist J as this would then mean a referral to a tertiary centre might be possible.  So, despite us knowing from the outset what was required and who J should see, this is how J was eventually referred to Royal Throat Nose and Ear Hospital.  The RTNEH had a specialist Paediatric Hyperacusis clinic within its Nuffield Hearing & Speech Clinic.  It turned out, as a result of his referral to this specialist clinic and talking to the staff, that tinnitus, hyperacusis and Autism Spectrum Conditions often go hand in hand.  Something that, when we'd mentioned it locally to "professionals", was met with raised eyebrows and their 'fussy family again' eye roll.

Another thing we learnt early on from the specialists at the clinic is that, contrary to what had been shouted in J's face locally, hyperacusis can be painful and this is known because adult sufferers (who appear to be more readily believable than a child) report it as 'feeling like a knife is going through your head'.  So, to the local 'professional' who got down to J's level and shouted in his face "don't be silly J, there is NO noise and it doesn't hurt you", you are wrong and your 'clinical manner' sucks.

Once referred to London, J undertook a series of appointments at the clinic, the first of which was a real eye opener as we all learnt about how hyperacusis felt for him.  We agreed an intensive treatment programme with the team and during late 2011 we attended fortnightly appointments at the Nuffield H&SC.  We all saw clinical psychologists and J initially worked with them to explain the problems he had.  There was a marked change in his ability to verbalise matters when he was told what the names of the problems he has, how the brain works processing sound, that he was not alone in having the difficulties and that they CAN be painful.

The reason we had persisted with obtaining an appropriate specialist referral was that, prior to treatment, J was completely uncontrollable and put himself at risk when out and about.  Problems were at their most acute when we used public toilets on days out as, if someone used a handdryer,  J would absolutely HAVE to escape the noise he heard.  If an emergency vehicle passed by with its siren on, he'd run away - anywhere, just away... His hyperacusis meant his body was taken over by its 'flight' response and that's just what he would do - exit/flee, without warning and run as far away as possible.

By undertaking a series of counselling sessions, which allowed J to talk through things and experience loud noises in a controlled and safe way (for him), progress was made.  He started with deciding on some words (a mantra of sorts) to write down and have with him in situations when he feared there may be a loud noise.  We worked hard to provide controlled exposure to all sorts of different sounds - hairdryer, vacuum cleaner, handdryers and so on.  It took weeks and J had anxiety charts to fill in and rewards were agreed (yes, they were all Lego!) for when he met his targets.  He liked the charts, targets and rewards.  The continued work with exposure to sounds was a chore, he didn't like it and it was a MASSIVE undertaking to complete the London clinic's treatment plan and attend for every appointment.

Slowly, very slowly, J was able to switch the vacuum cleaner on and off.  Then, he'd switch it on for 5 seconds, then 10 and so on.  Next he'd stay in the room whilst the hairdryer was on.   And so on. Tasks were agreed with J in advance and he not only had to repeat them, he had to work to remain calm and log his worry level.  Initially it was really small steps but, amazingly, after months of hard work, J was able to use a hairdryer himself, tolerate the vacuum cleaner and be far less stressed by hand dryers when out and about.  He now regulates himself when a siren sounds and will often say out loud "is that something I should worry about? No? OK. Carry on, it's all right."

J still has ear defenders (yellow of course!) which are shown at the top of this post.  We were advised that using ear defenders can make matters worse (as they may not be with J when he experienced a loud noise) and often they worsen tinnitus (or rather it becomes more noticeable as the background/white news is reduced).  However, J does take his ear defenders in his back pack to places where he knows there is going to be a short burst of loud noise - eg his disability sports day where the event's start is marked by a fanfare, played by a military corps on brass instruments, in an enclosed and echoey sports hall.  He wears them for as short a time as is possible.

We know J has sensory processing difficulties which together with hyperacusis and tinnitus can make visits to busy places such as shops and cafes unpleasant.  Add to this his challenges with his autistic spectrum condition and his associated/additional communication difficulties and it becomes easier to understand why the 'simple' act of asking for and buying a drink is, at the moment, impossible for him.  What the setting brings to J is a seemingly overwhelming set of "everything" that, in his own words, "paralyses me with fear and worry".  He has been working on a chart to share with his therapists in an attempt to find a way/provide him with the means to buy a drink and his favourite cookie.  He WANTS to do this.

When he's made progress, and I am sure he will given time, then we will blog more about it... and perhaps share the whole of this chart (which he worked on today and sparked an interesting twitter chat).






NOTE - The audiology professionals' magazine Audacity has an article on the clinic J attended here and how it has a programme to assist with childhood tinnitus (see page 26 onwards).

We also blogged about J's tinnitus here.

Jargon Busting? Maybe...

When you get into the realms of Special Educational Needs and Disability (SEN/D) a whole new language opens up in front of you.  At first, a decade ago, we went along to meetings where 'professionals' (or service providers) were spouting off terms that we had never heard before... and so the struggle to educate ourselves in this new environment and language began.  At the outset we (naively) believed the 'professionals' would know best as they would have experienced the difficulties we were talking about many times before and J is our only child.  This was a major mistake.   We should have been warned that many 'professionals' have such a honed area of expertise that they couldn't see J as a whole person - merely talk to the particular area in which they prided themselves in knowing alot about.  Rarely do the 'professionals' we meet see J as a whole, rarely do they go away and seek information prior to subsequent appointments and rarely do they explain, properly, what in the world they are wittering on about.... for that is what it sometimes (often) seems like.

Over the years, we have learned a huge number of TLAs (Three Letter Acronyms) and shorthand speak for 'things' that relate to J.  Starting in pre-school with SENCo - Special Educational Needs Co-Ordinator making an IEP - Individual Education Plan.  Moving through to LA - Local Authority and 'professionals' such as EP - Educational Psychologist, SLT (SaLT or S&LT) Speech and Language Therapist, OT - Occupational Therapist, PT - Physiotherapist.

Later came the dxs (diagnoses), treatments, investigations, assessments and discussions about difficulites: DCD - Developmental Co-ordination Disorder, ASD - Autism Spectrum Diagnosis/Disorder, AS - Asperger's Syndrome, LD - Learning Difficulties, EDS - Ehlers Danlos Syndrome, SPD - Sensory Processing Difficulties/Disorder, CAE - Childhood Absence Epilepsy, AED - Anti-Epileptic Drug, SI - Sensory Integration, MRI - Magnetic Resonance Imaging, EEG - Electro Encephalo Gram, CE - Conductive Education, VF - Video Fluoroscopy, SIPT - Sensory Integration and Praxis Test, WISC - Wechsler Intelligence Scale for Children, CAMHS - Child and Adolescent Mental Health Service, CCG - Clinical Commissioning Group

Along the way you hear of other terms: DS - Down's Syndrome, CP - Cerebral Palsy, ADHD - Attention Deficit Hyperactivity Disorder, ADD - Attention Deficit Disorder, LAC - Looked After Children, OCD - Obsessive Compulsive Disorder, BI - Best Interests, CoP - Court of Protection, CAF - Common Assessment Framework, MH - Mental Health, EBD - Emotional and Behavioural Difficulties, PMLD - Profound and Multiple Learning Difficulties, SW - Social Worker, PA - Personal Assistant, VI - Visual Impairment, HI - Hearing Impairment, NT - Neuro Typical

Then the terms relating to legal challenges regarding education and disability:  SSEN - Statutory Statement of Special Educational Needs,  WD - Working Document, FTT - First Tier Tribunal, UTT - Upper Tier Tribunal, JR - Judicial Review. From 1 Sept 2104 SSEN will be transitioned to EHCPs - Education Health and Care Plans, LGO - Local Government Ombudsman, PHSO - Parliamentary and Health Service Ombudsman.

Not forgetting the DLA - Disability Living Allowance, CA - Carer's Allowance, PIP - Personal Independence Allowance, DSA - Disabled Student's Allowance, ESA - Employment and Support Allowance.

Unfortunately, this is in no way a comprehensive list of terms that are regularly bandied about in relation to Children and Young People (CYP) like J... it's a quick list that has come from a twitter chat (where TLAs come in useful to maximise the 140 character limit) in which someone expressed wholly understandable confusion around the terms being used.  I'd started this post ages ago but am now wondering if perhaps it may help a bit?  Whatever, it's being posted and can be used/not as suits.

Feel free to add more terms through using the comments below!

Wrist pain and KT Tape

A frequent manifestation of our Ehlers-Danlos hypermobility is wrist problems... clicking, grating, subluxing (partial dislocations), pain, aches and weakness.  Mine has been persistently bad and I was looking for 'something' to give my left wrist support, without thickness, that my skin would tolerate and allowing the joints to keep mobile... also required was a means to support the joint overnight without my fingers swelling.  Oh, and it had to be yellow!  So, not much to ask!?

Luckily, twitter was a good source of assistance and soon a conversation was taking place with the helpful tweeter @KTTapeUK.  When it was confirmed that a yellow tape was available, excitement rose.  Even better, we were sent a few strips (with instructions, wrist bands, sweets and a sticker) to try out. 

To make sure we knew what to expect, we watched the youtube video which covered KT Tape application where the problem is wrist pain.  This, together with the printed sheet that came with the tape, was sufficient for us to feel confident about applying the tape.

The tape was prepared first... cutting and shaping and, as it was my wrist that was to be the guinea pig joint, an able helper (husband) was co-opted in to help.

Following the instructions carefully, the tape was applied first to the top of my wrist.  Then the other side and, finally, up from the back of my hand onto the lower arm.

Next came the 'test'... would it help?  Would my skin tolerate the adhesive?  Would it stay on?

Answers to all the above = yes!!   Wrist stability was helped, the pain and swelling was reduced.  My skin didn't object to the adhesive (which is unusual!) and it stayed on for a couple of days.  Enough time to allow my wrist to rest and recover... and it is, as I type, PAIN FREE and in the right place.  What a great result.

KT Tape is a useful find and we'll definitely by buying some (I'll be choosing a different colour!) to have 'reserves' for future joint problems... and, having seen the yellow tape, J's agreed to try it next time he gets a persistent ache/instability.

Disclosure - we were sent the tape to try for free.  We were not required to write a blogpost and all the opinions are our own.

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