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No Voice Unheard

August 24, 2015

I find myself both chuckling and fuming about the developments of today.

For the past few months, I’ve been having problems with what I thought was my throat. Two trips to the GP and two courses of antibiotics later and today I went for the hospital referral to discover the problem is with my vocal chords. Basically they’ve been damaged by wear and tear. There is a nodule on one but the doctor isn’t recommending surgery yet. Thank goodness because the surgery sounds grim and I wouldn’t be able to talk for four weeks afterwards. In the meantime, I have to do several things. Rest my voice as much as possible. Start vocal therapy. Make some changes to my diet. I’ve also arranged a consultation with a herbalist. Hopefully, all these interventions will prevent the need to operate.

The hardest part will be resting my voice. From being a little boy with as the professionals believed “no speech”, Steven is now talking all day long. When he wants an intense two hour music session, Steven won’t understand that I’m trying to rest my voice. He wants to sing and discuss where the Mael brothers in Sparks spend their annual holidays and where they buy their shoes. We can’t watch Cry Baby in contented silence. We have to discuss what Johnny Depp has for tea on Saturdays and why he gets tearful having a haircut. By the end of a full day of constant chat my voice is an inaudible croak.

I went straight from the hospital to the bank to meet the Customer Experience Manager. This was the latest hurdle in sorting out Steven’s accounts so they meet the OPG’s specifications. I came away no further forward. The 34 page form ended up with 33 pages struck through with ” N/A”. However, the bank still weren’t satisfied and I’m left having to make phone calls to the Court of Protection, the OPG, the DWP and all the organisations Steven has a direct debit with. The CEM told me that a Deputy account is treated like a business account, which had a certain irony because availing oneself of personalisation feels like running a full time business. I lost the will to participate when we came to the section of the 34 page form which covered the countries Steven would be doing business with!

The bottom line is that attempting to rest my clapped out vocal chords is pissing in the wind. My life is full of conversations about the colour of Adam Ant’s underpants and trying to convince a bureaucrat that my autistic son is not the head honcho of a money laundering scheme with the Cayman Islands.

You can imagine, I’m putting a lot of faith in the herbalist coming up trumps.

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From → Social Care

8 Comments
  1. Rosemary Burslem permalink

    Hi Mark,

    Sorry to hear about your vocal nodule. I used to be a speech and language therapist and think it would definitely be worth seeing a S&LT. You can ask your GP or consultant to refer you or you can refer yourself I think. Just phone up your local hospital and ask to be put through to the S&LT department. A vocal nodule is just like hard skin that can build up on your hands or feet. Sometimes it can be due to the way you speak – making your vocal chords come together too hard. Obviously it is impossible for you to be completely silent all the time. However, when you have to speak you can use what S&LTs call “minimal voice. This is NOT whispering – whispering is actually hard on the vocal chords. It is just speaking very quietly. A S&LT who specialises in voice therapy will be able to give you much more info and help.

    The problem with the bank account for the money you are deputy for sounds a nightmare. It isn’t something I’ve had to deal with because my son only has benefits money so I just need to be his appointee. Maybe you could try putting a message on something like Choice Forum – see: http://www.learningdisabilities.org.uk/help-information/forums. We had a struggle to find a bank account for our son’s Independent Living Trust for his Direct Payments but finally found the NatWest’s Personal Trust account. Maybe that would be ok for you.

    Kind regards,

    Rosemary

  2. Can Steven read, or understand flashcards or easy read images? Could you introduce an hour each afternoon when that’s a game and only cards are used, maybe Steven has to guess it?

    No voice is a toughie. But there must be ways round it?

  3. nic permalink

    meeting spec for banking ( NatWest in branch on recommendation ) no signature no problem. Everyone in transition from ILF is getting the run around on this as well. The good news for the voice is wear and tear is just that. A creaking cart goes on for years.

  4. Rosemary Burslem permalink

    Sorry Mark – realised the NatWest Personal Trust account would be no good for you unless you set up a trust. The trust we set up is a bare trust in legal terms. I don’t know if this would be suitable for you but if it is it is easy to set up. You can do it yourself – you don’t need a solicitor.

  5. Sally permalink

    I am sorry you may be looking at an operation and think the SLT advice above sounds good..
    As to resting the voice…every single parent of someone with LD/ASD I know has developed a calm, clear, resonant voice (along the lines of a sat nav) for daily use which can be heard throughout the house (“We are going to the shop. time for coat. .yes it is bun day..there is a dog and it is a nice dog”) the voice can be increased to a Freddie Mercury level high volume yell in times of crisis, which happen throughout the day. (“Stop! No hitting ! Time to put down! , Off road! Come back!”)
    I can usually tell if a fellow parent of someone with ASD is in the area sight unseen on the voice alone. Resting the voice? Not possible.

    • nic permalink

      exactly right, the voice. My friend cares for two adult sons, her throat is her Achilles. Autumn through to spring years ago now I think all year long. Tired constantly and talking constantly without natural pauses and then explosive yells to avert disaster are the norm, likewise movement slow slow hundred miles an hour. Sexist comment, but she never mentions it ! voice completely disappears and she squeaks until it returns.

  6. Pauline Thomas permalink

    Mark just reading your problems with your health and the awful awful way the banks and everyone else with a finger the pie have harassed and wearied you, makes me weep.

    How can someone who is doing his very best get so shit upon. The awful thing is the fact that Steven needs so much reassurance and yet it is harming you when you have to meet this need. It must be like walking on eggshells. I really hope that you get this all sorted. This could be happening to anyone of us carers and it scares me witless. Good luck.

  7. Cathy H. permalink

    I read your blog frequently. I enjoy reading your posts, while cringing at how crap you get treated as an autism parent.
    I hope you find a way to rest your voice, and find a painless way to update the bank accounts.

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