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Category: Motherhood

I’m just Mummy, despite my disability

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Equality & Diversity, Family, Making a difference, Motherhood, My writing, and Personal

My little boy is now three and a half and he really is the apple of my eye. To Jack, I’ve always been just Mummy.  It doesn’t matter that my speech is a bit funny or that I walk differently to everyone else. My wheelchair is just part of me and Jack doesn’t care about any of it, all he cares about is Mummy’s cuddles!

He’s grown up with my disability and although he’s starting to realise my limitations, they thankfully don’t matter.  I’m his mum and that bond is as you’d expect, as strong as any other mother/son relationship.

I know there may come a day when Jack will ask questions about my disability and I’ve been giving a lot of thought as to how I might answer them.  With honesty and humour, that’s my plan. I want Jack to be able to ask any question he wants and know he’ll get a honest answer.  I don’t want a lack of knowledge to make him fearful of anything in life.

That’s what has inspired the book I’m currently working on. Too many children are not exposed to disability and then when they do come across it, they are unsure what to do. I’ve overheard so many conversations,  where a child is asking mum or dad why I’m in a wheelchair or why I speak like that. The parent’s embarrassment often leads to both a hushed and a rushed response and I think children need and deserve more if they are going to be equipped to manage situations in the future.

As well as raising disability issues within the context of a story, my book will also offer nuggets of advice for teachers and parents, who may understandably struggle to answer those awkward questions. I hope it will enable children and parents to initiate open, honest and fulfilling conversations which help to satisfy children’s curiosity and give them both much needed “disability confidence”.

Watch out for further information, title and release dates!

Facing a diagnosis of Cerebral Palsy: Hope for Parents

Posted in Cerebral Palsy, Disability Aids, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Equality & Diversity, Family, and Motherhood

 

I must admit to being a bit of a soap addict.  I was thrilled to see “Emmerdale” doing their bit for Cerebral Palsy Awareness Month, following the difficult birth of Megan and Jai’s baby girl.

The doctors have advised the new parents that due to complications during the birth, which meant the baby suffered a lack of oxygen, she may now have Cerebral Palsy. Though I remember that “it’s just a story,” I have much sympathy with the characters who have no clue about what Cerebral Palsy is or what the future might hold.

It’s scary.  Hard to believe. You don’t know where to turn and at this stage, the doctors can’t make any promises or offer any kind of reassurances. The future now seems like an up hill battle, with the summit seeming unattainable.  That’s how many parents feel when being told their child has Cerebral Palsy – a condition for which there is no cure.  I have no doubt that is how my own parents felt, thirty something years ago, when they were told the same thing about me.

There was no internet back then, nowhere to seek reassurance and all they could do was take one day at a time.  They could only hope and pray that the dim view that the doctors painted of my future was wrong. And indeed it was.

Despite my physical limitations, Cerebral Palsy didn’t rob me of either my intelligence or my desire to lead what some might call, a “normal life”.  Despite many sceptics, I enjoyed a mainstream education which ended in me graduating with a 2:1 Honours Degree from Oxford Brookes University.  I went on to secure full-time paid employment and became a successful manager in a small Disability Charity.

But I also had other dreams and ambitions that when I was born, 33 years ago (almost!), would have been deemed impossible, unthinkable even by those who knew of my fiery and determined personality.   I daren’t even voice my dreams but I knew that I wanted two more special roles:  A wife and a Mother.

Who would have thought, all those years ago, that those dreams would also be realised? On 3rd September 2011, I took some shaky steps down the aisle and became wife to Dean, with the most amazing wedding. Then on 28th June 2013, I became Mummy to the most beautiful little boy, Jack James.

If my parents could have looked into the future and known the life that lay ahead of me, that diagnosis of Cerebral Palsy wouldn’t have seemed half as bad. Yes, there were challenges and it wasn’t always easy but my parents and I maintained two things: hope and determination.

So what would I say to parents facing the same diagnosis?  Firstly, don’t jump to conclusions.  Cerebral Palsy affects everyone differently and it’s important not to make assumptions before you know the facts.  Secondly, a disability isn’t the end of the world and if you don’t believe me, read “Why I love having Cerebral Palsy.” Finally, just don’t give up.  It can seem hopeless, like your life or your child’s will never be the same.  But with hope, determination and a good sense of humour, the future can and will be brighter than you imagine it to be!

A knock for working parents

Posted in Accessibility, Disability and kids, Disabled Access, Disabled Parent, Family, Making a difference, Motherhood, and Personal

For almost two years now, our little boy has attended the local nursery and I’ve always said, it’s the best decision we’ve made.  Jack absolutely loves it and has developed so much under their care and I’ve never worried about him being there.  The nursery offered concessions that other local nurseries didn’t and most importantly, it’s fully accessible, unlike most of the other local nurseries.

So you can imagine our distress and disappointment recently when we received a letter, stating that not only were prices increasing but that almost all of our concessions were now being removed.  These include:

  • Changing the opening time from 7.30 to 8am and expecting parents to pay more for this reduced service. Opening at 8am puts working parents under immense pressure to get to work on time, particularly those who don’t work locally.
  • Expecting us to pay for a service when we can’t access it.  Every year, the nursery closes for two weeks at Christmas and up until now, we didn’t have to pay for this.  Now we are required to pay for the Christmas break, all bank holidays and times when we take our children on holiday – we used to get 2 weeks half price for holidays.  This totals four weeks of extra fees for a reduced service.
  • Fees are now payable upfront from September, meaning that in August (peak holiday time) parents are expected to pay double their fees.

These decisions have a massive impact on us and our families and yet they have all been taken without any consultation and without any thought or consideration for how parents will manage these changes, either practically or financially.  This is both arrogant and offhand.

As a wheelchair user, this nursery is the only nursery that I am able to get to which is fully accessible.  To make all of these changes without consultation is very upsetting, given my very limited options for childcare.

There is a meeting next week for parents to voice their concerns but we have been told already that non of these decisions will be reversed. I think this is extremely arrogant and disrespectful to parents – the people who are paying to keep their “business” afloat.  The Government offer various incentives for parents to work and then we have these changes enforced upon us – it doesn’t make any sense.

Casting Call for Extraordinary mums-to-be

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Family, Fighting for Change, Media, and Motherhood

On behalf of Curve Media

Few mums-to-be would say that pregnancy is easy or stress-free, but for some women, having a baby presents exceptional challenges.

 

Curve Media have been commissioned to make a second series of 6 x 60 minute episodes for Discovery, on the subject of pregnancy called “My Extraordinary Pregnancy”.

 

This factual series will take a look at unusual pregnancies around the world- meeting mums-to-be who are juggling the excitement and anxiety that pregnancy is expected to bring, but who might have an extra ‘something’ to take into account.

 

We’re looking for women who are experiencing their pregnancy with a pre-existing condition or disability of their own (such as dwarfism or visual impairment) or have a condition brought on by the pregnancy (like extreme cravings, or severe morning sickness).

 

We’re also looking for mums-to-be who, might have previously been told they were unlikely to conceive due to unusual gynaecology.

 

Across this observational documentary series, we’ll follow these women through their unusual pregnancies, as they and their families prepare for the birth of their baby. We’re hoping to film with the pregnant mum’s medical practitioners to help the audience understand how the expectant mother’s condition affects her experience of pregnancy medically, while the mum-to-be and their loved ones will take us through the day to day realities of their unusual pregnancy.

 

If you think you may have members, or know of families or individuals, who would be interested in the possibility of our helping them share their pregnancy story, please do call or email the My Extraordinary Pregnancy producers on 0203 179 0099 / extraordinarypregnancies@curvemedia.com – we’d love to hear from you.

 

Please note: We will use and store the personal details contained in your email and any further response, in accordance with the Data Protection Act 1998, for the sole purpose of producing the programme.

“Don’t take my baby” – Disabled Parents under Scrutiny

Posted in Cerebral Palsy, Disability Aids, Disability and kids, Disabled Parent, Family, Motherhood, and Personal

I recently sat down to watch, “Don’t take my baby”, a factual drama which tells of a disabled couple’s fight to keep their newborn baby daughter.  It’s a subject close to my heart as a disabled parent myself.

The mother had a physical, life-limiting disability whilst the father was partially sighted and his condition was expected to deteriorate.  As soon as their daughter was born, social services began accessing their capabilities as parents and their every move was scrutinised.  Rather than being supported in their new role as parents, they were automatically assumed incapable and put under the enormous pressure of having to proof that they could look after their little girl. Any parent, disabled or not, would struggle to cope whilst their every move was being observed and their every little mistake noted down.

After four months of cruelling assessment and observation, the couple were eventually deemed capable parents and they were allowed to keep their little one.  The programme brought me back to the early days of my pregnancy, when I used to fret that I could be deemed an unsuitable parent and that “someone” might try and take my baby away from me.

I remember voicing my concerns to my midwife during my first appointment.  Even though I had a supportive family and an able bodied husband, I worried that my disability would raise concerns.  My midwife assured me that nobody would be taking my baby from me and that everything possible would be done to enable me to look after my baby.  I felt reassured and I was confident that once my baby was born, I’d find my own ways of caring for him and that my disability wouldn’t prevent me from being a good mum.

Although I had a lot of support during my pregnancy and special arrangements were made for the birth, this is where the support stopped.  My husband Dean and I went home with Jack and as a family, we found the best and safest ways for me to care for Jack.  It wasn’t easy to begin with but Dean took time out from work to be with me so that I could gradually build my confidence in doing things for Jack.

Nobody offered us any help or an assessment for things which may make life easier. It was just assumed that we were OK and although this was true, I am left wondering who makes the decisions about who should be assessed and who is left to get on with it.

I am grateful that nobody thought it necessary to interfere; my baby is now 2 years old so I think I’ve proved that I am very capable of being a mum.  But I am also saddened and angry that other disabled people are being presumed incapable just because they have a disability and are being put under such intense scrutiny.

Disabled people have just as much right as anybody else to become parents.  As a society, we should be providing as much support as possible and enabling disabled people to fulfil their potential; not automatically and naively judging them based on nothing more than assumptions.

A disappointing experience as a new Disabled Parent

Posted in Disabled Parent, Equality & Diversity, Motherhood, and Uncategorised

 

A few days ago, my husband and I went to register our new son, Jack James at Birmingham Registry Office.  It was an occasion which I was looking forward to, as I’m sure all new parents do.

However, my excitement and pride was soon replaced by upset and anger when we entered the registrar’s office.  With Jack wriggling and crying in my arms, she turned to ask me my name but as soon as I opened my mouth, she looked at me blankly, making it clear she couldn’t understand me and then immediately turned to my husband, expecting him to speak for me. As I’ve said before, I have a speech impairment but with time and a little patience, it isn’t difficult to understand me.  After all, I wouldn’t be a successful trainer if I couldn’t effectively communicate!

From then on, she directed all questions to my hubby and although he told her she was being ignorant, she ignored his comments.  I continued to try to interject, telling the registrar that I was quite capable of answering her questions but the registrar then bluntly stated that only one parent was required to regjster Jack.  In other words, my presence was not needed.

Unfortunately, Jack was very unsettled and in need of a feed so it wasn’t an appropriate time to challenge her ignorance and I left hubby to complete the process.  But I was angry and frustrated at being made to feel like I was surplus to requirements just because the registrar was too ignorant to take the time to listen to me.  She ruined an important occasion, one which I can never repeat and yet she is completely oblivious of this fact.

Since 2010, every public sector organisation has had specific responsibilities under the Equality Act to “Eliminate unlawful discrimination, harassment and victimisation and any other conduct prohibited by the Equality Act”.  So I find it incredible that three years on (as well as 17 years since the Disability Discrimination Act 1995) disabled people are still having to tolerate such ignorant attitudes and being made to feel like second class citizens.  I wonder if any other mother would be treated  this way and the answer is quite rightly, no so why should I accept such treatment?

Public sector managers, and indeed all managers, need to remind themselves of their legal and moral responsibilities and start taking steps to ensure that their staff are treating disabled people with the respect and dignity that they deserve.  They need to stop paying lip service to the legislation, stop merely ticking boxes and start taking  meaningful, positive actions to ensure that equality and diversity is truly understood and accepted  by every member of staff.