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Mixes of Lack of Disability Support and Strong Disability Support

20/12/2019

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On Thursday (19th) I drove into town (Huddersfield) to take Blakely for lunch.  I was stunned by how busy it was plus

a delivery truck was parking on nearly three disabled spaces.

It seems disabled peoples' needs for parking aren't important.  Eventually, I did actually find a space.  Changed my ideas for lunch location but where We went to was great.

A couple of weeks ago I drove my step-daughter for an orthodontics appointment.  There was no parking available around the orthodontics building but there was parking space a few feet from that building.  So, I put my car there.  Put my disabled blue badge on the dashboard with the time I parked.  My car was there less than an hour but I got a ticket because that part of the parking required a pass (not resident pass).  I appealed saying I'm disabled so I cannot walk far and I was there a short while.

My appeal was rejected.  My being being disabled wasn't worth caring about.  I mean, I have multiple sclerosis.  Benefits groups officially know I cannot walk far.  But that doesn't count for anything.

I get a ticket because disability isn't important for some organisations/people.

Here today, I'm writing this while I'm sitting next to my disabled daughter (Tabitha) in my house.  (Medical people don't know yet why she's slow in development.)   We're waiting for a special cot for her, which is brilliant.  Excellant support

I was told this cot will come between 9am and 4pm.  That's a pretty broad range bearing in mind I that day I
  • fed my two daughters, then changed their nappies and changed their clothing (from 6.15 to 8.00)
  • dropped off my daughter, Blakely, at nursery (8.20)
  • did shopping at nearby supermarket and got petrol for car (8.25 to 9.00)
  • got home, made Tabitha comfortable, fed the cats so they wouldn't get in the way (9.05 to 9.30)
  • started making my breakfast when visted by nurse checking on Tabitha's well being including weight. (9.30 to 10.30)
  • went to nursery with Tabitha where specialists measured her for a frame which encourages her to stand upright to aim bone and muscle development in her legs. (10.30-11.30)
  • So finally had my soaked breakfast (cereal with milk left for an hour when I was called the nursery!) and I could rest to recover.

The cot came at 3pm brought in by two big blokes as this cot is metal and electronic so it weighs a LOT.

Full compliments to them especially with the weather being drizzly.

Nice break from the unpleasant discrimination disabled people often get.


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Depression, Fatherhood and Babies.

10/12/2019

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Let's face it most parents at some point in their lives face depression.

It's unavoidable.  In face I looked at some figures about depression. (Don't worry I'll get onto talking about my children soon!)

I looked at interesting data from the Mental Health Foundation.  In 2016

  • "1 in 6 adults experiences a common mental health problem, such as anxiety or depression and 1 in 5 adults has considered taking their own life at some point." [1]

Quite major considering we're coming up to Xmas.  Many people find the Xmas time stressful and depressing.  Even worse if you're on your own.My Mum sent a message to my wife saying if we didn't want her coming over for Xmas that's OK.  My step-daughter was taken aback and expected her to be at home during Xmas time!  She likes her step-nan!

Not everyone is as lucky as that I think.

As for my two baby daughters.  Well, like about 3/4 of children (and parents) at the moment various bugs are swanning around.  So plenty of coughs, sneezes and dribbly noses.  Plus diarrhea and vomitting as well. 

Thankfully, my daughter, Tabitha, is out of hospital so now she's home or in a nursery recovering.  My daughter, Blakley, was taken out of nursery for a couple of days with the vomitting and diarrhea.  She's better now.

It's my step-daughter's turn instead.

Yes, both my wife and I have had a stuffed nose etc but we're surviving...

I think only the cats are okay apart from the increasingly cold and windy weather.  So they had to rough it by being inside and fed when they could...

  1. (from https://www.mentalhealth.org.uk/publications/fundamental-facts-about-mental-health-2016)
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Illnesses in Children and Parents Affect the Whole Family

24/11/2019

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Well, it's been a difficult few weeks.

Tabitha is in hospital (for next few days) and my wife has chosen to sleep in the hosptal room where our daughter is.  She has bronchiolitis and requires oxygen delivered by tube to her nose.  She also has low blood sugar and is deficient in certain areas needing regular drugs.  So she's connected to several tubes as well as heart monitors.

She's bearly over a year old.  This girl has had too much to deal with.

I understand that young children regularly have colds etc.

  • "It is normal for a child to have 8 or more colds per year."
[https://www.healthdirect.gov.au/childhood-illnesses]

Our other daughter, Blakley, has a cold with the usual runny nose.  Of course, she doesn't think twice about giving it to everyone around her!  So yeah, I've had a snuffly nose sore throat etc but now it's clearing up very quickly.

Of course, it's hectic looking after Blakley every morning before her and me going to the hospital to see her sister and her mummy.

(She keeps calling "Mummy, Mummy" despite it's Daddy who's been feeding her changing her clothes and nappies (eww!) plus gently putting her to bed...

Ho hum.  Will I get appreciation from her when she's older?  I doubt it...

Sigh.

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An Unknown Future for My Daughters and I

31/10/2019

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I've had Tabitha at home with me while Blakley is at a local nursery.

No one, not the doctors and nurse either, know how Tabitha will be as she krows older.

To be honest, no one knows how my personal condition, with a form of progressive multiple sclerosis, will be as I grow older.

As many people do I look at Wikipedia about mutiple sclerosis:

  • "The average life expectancy is 30 years from the start of the disease, which is 5 to 10 years less than that of unaffected people. Almost 40% of people with MS reach the seventh decade of life. Nevertheless, two-thirds of the deaths are directly related to the consequences of the disease. Suicide is more common, while infections and other complications are especially dangerous for the more disabled. Although most people lose the ability to walk before death, 90% are capable of independent walking at 10 years from onset, and 75% at 15 years." [1]
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Well, I don't plan to 'pop my clogs' any time soon.  I want to see my children grow up and me to be annoying to them (and my wife as well of course).

As it is, Tabitha is having trouble with the medication she has to drink a small amount of a steroid and that does work well with the order of food she takes otherwiise she throws up (like all over me when I had her on my lap).  She's bit by bit being weaned off it at the moment.

She also has special little gloves so she doesn't nibble at her fingers.  They are deliberately made to have a crunching noise which I think sometimes makes her sister wake up at night. (Blakley's normally a deep sleeper.)

Still don't have a special chair for Tabitha but apparently having special exercises for her at the nursery which I've asked them I'd also like to attend.

You know I'm normally an author but this is diverting me from my work.  I'm not bitter about that especially knowing it'll probably give me inspiration in my novel writing in some way!

(Let's face it that happened with Ben Elton's novel Inconceivable.  He and his wife were trying for a child which led to this book.)

Well, "my work in progress" doesn't feature any children (yet - that could change!) but it certainly questions reality!

What are my children going to think of that when they're older?


  1. https://en.wikipedia.org/wiki/Multiple_sclerosis
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Disabled Father and his Disabled Child

29/10/2019

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My twin daughters (Tabitha and Blakley) are just over a year old.

Blakley is bouncy.  When she was just a few weeks old, I could tell she was intelligent.  Now she keeps pulling herself from her knees on the floor to standing by using any solid object to hold onto.  (The solid objects are like a table and me when I'm sitting.)  She can't walk yet but...

Now about Blakley.  Thing morning, she kept wanting  me to help her eat MY cereal.  (sigh.)  So there I was putting a spoon of milk + cereal in my mouth then a smaller serving to my daughter hinting with her open mouth...

I'm sure my wife didn't include that in the list one of the warnings in bringing up a child.

Tabitha, however, has her own milk given by a tube going down one of her nostrils.  Not surprisingly, she doesn't like it and regularly pulls it out.  As a result, nurses keep coming over to our house.

She has a special chair used at the nursery the twins go to.  Yes it's expensive sending the girls to a nursery.  They have a special supportive chair for Tabitha. (Similar to this one.)  At home we don't.  C'est la vie.





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A Disabled Man Becomes the Father of a Disabled Daughter

25/10/2019

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I've got two year old daughters.

It's hard to admit that one of my daughters is disabled.

I can hear the vocal criticisms.  "If you're disabled why do you have children?"

The answer is simple.    I'M DISABLED NOT IMPOTENT.

My wife doesn't like me talking about my disablities.  Yeah, they're plural.  I have a form of secondary multiple sclerosis (MS), hearing loss in both ears and nerve damage on my face.  Yeah I have asthma as well but anyway...

By the way, MS affects every part of your body EXCEPT your hearing.

And I wear two hearing aids...

My daughter is just a year old.  She has delayed development.  We honestly don't know if ultimately she'll be OK or always need help.

She has a twin sister who has no issues.  But that doesn't mean I love her more.

I love them both equally.

|Today I was looking after my disabled daughter.  In fact, lets change things here.

When my wife was being scanned we could see one embryo was big and moving a lot around.  The other was smaller and moved a lot less.

We hadn't decided on their names so the smaller on was Tiny Tot or TT and the bigger active one we called Big Bugger or BB.

Did those nicknames influence us in formally naming our daughters?  TT became Tabitha and BB became Blakley.  (Obviously I'm using pseudonyms here.)

Well, their birth was a month before their due date (aound the 2nd November)

My wife was informed the birth would be by C-section as her previous daughter was born by emergency C-section.  She's never given a natural birth.

Well, the injections weren't straightforward for my wife.  Several tests and eventually they were able to do the C-section under local anaesthetic.

Tabitha was born first and the medical staff immediately took her aside to run tests.

Blakley was born a minute later.

After a few minutes cleaning by the nurses, Blakley was placed on my lap where she fiercely gripped one of my fingers.

That was just the start.


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    • Chapter One
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    • UK Store
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  • Novel - The Devil's Sister
    • Chapter 1
    • Chapter 2
    • Chapter 3
    • UK Store
    • US Store
    • Kindle Edition Store
    • Other eBook formats
  • Novel - Deprivations
    • Chapter One
    • Chapter Two
    • Chapter Three
    • UK Store
    • US Store
    • Kindle Edition Store
    • Other eBook formats
  • Film - The Devil's Ring
  • Novels to Buy
  • Novel - Reality
  • Anti-HateCrime
  • Art - Life Cycle Media
  • Poetry
    • The Dolphin
    • The Waterfall
  • Music - CoRiuM HiDe
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