Wonderful Women: Being a mum of a disabled adult

How to raise a disabled child

Today’s Wonderful Women feature is an interview with Sharon, a nanny of three (almost four) and mummy to Lauren, who suffers with cerebral palsy.

Sharon was nominated for this feature because her whole life has been full of sacrifices as a parent of a disabled child. She gave up her career to be Lauren’s full time carer and has been in that role for nearly 27 years now! She also raised her two older boys into adulthood as a single mum… Let’s give it up for Sharon!

1) Tell us a bit about yourself…

My name is Sharon, I’m 56, I live in Ashford, Kent and I have 3 grown up children. The youngest is Lauren who is 26 and is severely disabled so she still lives at home with me. Before I had Lauren I worked as a dental nurse and I thoroughly enjoyed it.

2) Your children are all grown up now, do you have any advice for new mums/mums of teenagers?

Yes, my children are all grown up now, but really the only advice I can think to give for teenagers is to keep your boundaries. They seem to want you as another friend but you’re not, you’re their parent and they have to abide by your rules.

For babies, just do your best and make the most of it because before long they’ve turned into horrible teenagers!

3) You’re a full time carer to Lauren who suffers with athetoid cerebral palsy, can you tell us about that?

Lauren was almost a year old when she was diagnosed with cerebral palsy, although I had an idea before then that was what the problem was. Athetoid cerebral palsy affects all four limbs and causes severe spasticity in those limbs.

4) How has it impacted on your life having a child with a severe disability?

Having a child with a disability has had a great impact on my life in many ways, but I think the main one is taking away my ability to go to work and earn my own money… So I’m completely dependent on the state.

5) You probably never expected to still be a full time parent when your children had grown up, is it tough to carry on that role for longer than you expected?

It’s very tough to still be caring for your child once they’ve grown up, especially as I’m getting older myself! Our bodies were not equipped to care for our children’s physical needs once they become adults and, of course, I often wonder what she’d be doing in her life if she’d been born able-bodied. What sort of person would she be? etc…

6) Do you have any advice for mums with disabled children?

It can be a long slog but don’t give up. Make sure you’re getting everything you can because once they become adults it’s like they’re suddenly cured!

It is also very rewarding when your child achieves something you were told they’d never do.

7) Is there a lot of support for children with cerebral palsy?

There is a lot of support for children with cerebral palsy but unfortunate that stops when they become adults.

8) How much of an impact did Lauren’s health have on your other children growing up?

Lauren’s health had a big impact on my other two children growing up. Simple things like going somewhere for a family day out isn’t as simple anymore when you have a disabled child.

My two boys became my little helpers once I had Lauren and had a big role in helping me to care for her. They went from two little boys into two men overnight.

9) You have grandchildren now, and Lauren is an Auntie, how are the grandchildren around Auntie Lauren?

I have 3 grandchildren and they are all very mindful of Lauren’s disabilities. The girls are especially and Lauren has a lovely relationship with them and loves them coming over.

10) Finally, do you have anybody else you’d like to nominate for our wonderful women feature? Anyone who inspires you?

Sarah, you inspire me. Your drive and determination is unreal – the way you start things and see them through, even when life wants to chuck more shit your way you do all this off your own back. You had no guidance, no nurturing and, I suspect, no encouragement!

I’d also like to nominate all the women out there that get up and do their bit, juggling jobs / childcare / running a home and everything else life wants to throw their way! I don’t think you realise how hard motherhood is until you have a child.

Thank you so much to Sharon for being part of this series celebrating wonderful women everywhere! If you have anyone to nominate please get in touch!

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I didn’t fall in love with my baby right away

Everyone knows the scenario. A woman is in labour (and absolutely exhausted), the midwife is shouting ‘one more push’, and finally, a baby is born. The cord is cut and the baby is handed to mum, who feels this overwhelming rush of love they’ve never felt for anything in their life, right?

Well, that didn’t happen for me.

While I was only in active labour for four hours, I’d had what some may call a nightmare of a pregnancy. Due to my EDS I had spent a good portion of it in a wheelchair, I was having hydrotherapy for the SPD and PGP that I developed (if you’re not sure on those, click here for more info), and I’d broken my foot because my EDS couldn’t keep up with the constantly increasing weight that comes with being pregnant. In the early weeks of pregnancy I contracted a viral infection which increased my risk of miscarriage, and baby developing foetal hydrops. And those were just my issues. Add in having scans for little one three times a week because she refused to be active, growth scans because my doctor thought that at full term she would weigh less than 5lb, steroid injections as I’m high risk for preterm labour, and a short inpatient stay towards the end of my pregnancy because my hips wouldn’t stop dislocating, we were essentially living in our hospital 5-6 days a week.
So it’s safe to say I was relieved when she was born, and she started breathing around 30 seconds afterwards.
I was so excited to be passed my new baby, and to feel this huge rush that every woman I know had been telling me about since I announced that I was pregnant that I pushed through two second degree tears, a dislocated hip, failed pain relief, a small haemorrhage and an incompetent midwife just to hold her. The midwife handed her over to me, and I was so amazed that this tiny (yet huge?) person had been with me for the last nine months.
But I didn’t feel that huge rush of love that everyone was talking about.
To be honest, I panicked a little bit, and I thought something was wrong with me. She felt more like a really cute stranger that I had a really strong urge to protect (and cry all over). I tried to breastfeed her twice, but as I’d been given diamorphine too close to delivery, my new bundle of joy was a little dopey, and kept crawling past the breast to suckle on my neck. Cute.
I continued to feel this way for the next few days. I had panic attacks whenever I was left alone with her because I was terrified I was going to break her, I couldn’t sleep if I was alone with her because I was terrified something was going to happen to her, and in the end, including the time I was awake and in labour, I didn’t sleep for three days. I got so worked up about that initial meeting with my daughter that I couldn’t think about anything else. I was convinced I was broken, and that it meant I was going to be a bad mother and this was all a very bad idea. Don’t get me wrong, I thought she was adorable; I was so proud that I had made her, and I wanted to take care of her, but I was just so disappointed that I didn’t get that first meeting that people claim to be the best moment of their lives.
Looking back on it now, I realise it’s totally normal. The birth and pregnancy I had with my daughter was far from normal, my body had been through a whole ordeal, and I was exhausted. I was hormonal, sleep deprived, very drugged from labour, and did I mention they handed me my baby for the first time while stitching me up with no pain relief?
Ouch.
How did you feel when you first met your baby?

Making a Safe, Accessible Space: Tips for Disabled Parents

You’ll need to know what alterations are required and how you’ll pay for the more expensive ones. Don’t be dismayed by the presumptions of people who don’t understand that disabled individuals can be just as amazing parents as anyone else. After all, it is estimated that there are more than 4 million parents with disabilities in the United States today, according to the National Center on Parents With Disabilities.

This post is something which is very important to me having witnessed my mother-in-law’s daily struggles with her disabled daughter – it’s easy to think of disabled children and I can bet we all know one person with a disabled child, but how many disabled parents do we know? Paige and Amy have previously both shared posts on their disabilities and how it has affected their lives (see the thumbnails at the bottom of this post to read more!).

Parenting is a scary thing for all of us, but for disabled parents there are even more factors that need to be taken into account.

Here is a fantastic piece from Ashley at disabled parents.org on things that can make parenthood that little bit less daunting for disabled parents in the US.

Thank you Ashley!

Tips for Disabled Parents

Disabled individuals make excellent parents by learning to adapt their physical capabilities and living environment to the needs of a newborn. Preparation is the key – address accessibility and safety needs in advance so you’re able to provide responsive care unimpeded and without fear for your safety or that of your child. That means making modifications to your home and in your habits. That can be easier said than done, especially given the cost of making structural changes to your space.

You’ll need to know what alterations are required and how you’ll pay for the more expensive ones. Don’t be dismayed by the presumptions of people who don’t understand that disabled individuals can be just as amazing parents as anyone else. After all, it is estimated that there are more than 4 million parents with disabilities in the United States today, according to the National Center on Parents With Disabilities.

Courtesy of pixabay.com

Modifications

Anyone who’s ever been an expectant parent has made some changes to their physical living space. Accommodations need to be made for baby and childcare equipment and supplies so parents have ready access to their child both day and night. Exterior stairs need to be bypassed with an entrance ramp for parents who are in a wheelchair or who have some other form of mobility limitation. Bedrooms should be relocated to the first floor so interior stairways don’t present a safety hazard. Replace carpeting with laminate or tile flooring for easier movement, and note that doorways may require small transition ramps to level out the space between rooms.

If doorways are less than 32 inches wide, consider installing expandable hinges to improve access. Bathrooms can be particularly hazardous places for disabled individuals, the site of more falls than any other room in the house. Grab rails should be installed alongside the toilet and in the shower, and skid-resistant mats placed in front of the sink and toilet. Light switches and electrical outlets should be lowered for easier access, and door knobs replaced with levers.

Financing options

Many of these modifications can be made with relative ease and quite affordably. However, others can run into the thousands of dollars. Fortunately, there are a number of options for financial assistance made available by the government, including Home and Community-based Medicaid Waiver Programs, for individuals who receive assistance via a Medicaid waiver.

The USDA also makes loans and grants up to $20,000 to low-income homeowners for repairs and improvements through its Rural housing Home Repair Loan and Grant Program. Eligible veterans have access to a loan for home modifications through the VA’s Home Loan Guarantee Services.

The right equipment

Much of the equipment commonly used in baby- and childcare has also been modified in recent years to meet the needs of disabled parents. Side-entry cribs allow wheelchair-bound parents to reach directly into the crib for diaper changes and late-night feedings, and swiveling child-safety seats make it much easier to move a little one in and out of the car without placing undue strain on the back. For bathing, small plastic baby tubs can be placed at tabletop level, with the hose from a kitchen or bathroom sink providing the water. A shoulder strap sling, which can be purchased for about $50, makes carrying a baby or small child much easier as you move around the house or run errands.

Preparation is key for an expectant disabled parent. That includes making any physical alterations to your home to ensure adequate accessibility and safety, and it makes good sense to invest in equipment designed to make parenting as easy as possible for a disabled individual.

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Frank Fridays : the realities of being a disabled parent

I’m honest with my friends about my health struggles, and I also write for The Mighty about some of my experiences. Now I feel it’s time to open up to you, the Mummykind family.

The truth is that my health is often poor, but I don’t make a habit of advertising it. Honestly, I find it so difficult to be honest about my struggles as a disabled mum, because so often people hit me with ‘if you’re disabled, don’t you think it was selfish to have a baby?’. It stings because they don’t understand that I’m a good mum, only that I have difficulties and that must mean I’m a bad parent, right?

Newsflash. EVERYONE has difficulties. It’s how you deal with it that matters.

I’ll try and keep the medical jargon to a minimum while explaining some of what I have to deal with day to day – having dealt with some of my conditions since birth I’ve been told that I sound like I ate a medical textbook!

I currently have seven conditions diagnosed, with more in the pipeline (lucky me, eh!)

Ehlers-Danlos Syndrome – This is one of my most prevalent illnesses. I was born with EDS, and while every day is different, most days are an uphill struggle. EDS is a rare condition that affects connective tissues. Connective tissues are present in skin, organs, blood vessels, muscles, tendons, ligaments and bones (so basically everything). Symptoms I deal with every day are loose, unstable joints that dislocate every day, chronic pain, easy bruising, muscle weakness, fatigue, and problems with internal organs.

Orthostatic Hypotension – When my new Orthopaedic Surgeon heard I had this, he said ‘really? But you aren’t old!’. Well, newsflash Mr, young people can have Orthostatic Hypotension too. Put basically, when I change position from lying to sitting, or sitting to standing, my blood pressure plummets to dangerous levels, and I lose consciousness and faint.

Mast Cell Activation Syndrome – the cells in my body that react when you have an allergic reaction are over active, and my body spontaneously develops new allergies all the time, even to something that was safe yesterday.
Gastroparesis – my stomach can’t empty itself as effectively as other people’s can, which means food stays in there for far too long. Glamorous.
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis – I’m super tired all the time! Yay!
I also have Celiac disease and Asthma, but those seem pretty pale in comparison!
Now that’s out of the way (and well done if you’ve got this far, medical stuff can be snooze inducing!) hopefully some of what I’m about to say will make more sense!
I think it’s important to start with the fact that the realities I experience living life as a disabled parent will be very different to someone else’s. Life is so variable, and what’s difficult for me might seem like a walk in the park to someone else, and vice versa.
The biggest reality I’m trying to deal with right now is that parenting my daughter is nothing like I thought it would be. Though I try to do the best I can, there are days like today where I really can’t function enough to look after myself, let alone my little one.  I’m blessed to have my husband at home with me all the time (fainting unpredictably means I can’t often be left alone) and my wonderful John is often left to care for my little climber while I have to rest. I often feel a real sense of guilt because I’m not living up to the perfect image in my mind of what a mother should be. I’m faced with the reality that I can’t do all I want to for her all the time. And that’s ok. It doesn’t make me a bad parent for having to take a step back and recover my strength. It’s a good example of self-care to set my daughter, if anything.
It also strikes me that my monkey won’t grow up in the same way other children will. While it’s great that both her mum and dad are home with her all the time, it worries me that I’ll miss out on important things later down the line because of my health. Because my illnesses are so unpredictable, i’m often fine in the morning and struggling in the evening, or the other way around, and that can be difficult to understand for one so little.  I might not be able to take her to the park when she wants to go, and I might have to watch her play from a distance rather than getting involved.
Not being afraid to ask for help is a big lesson I’ve learnt over the last few months. It is practically impossible to look after a crawling explorer while you’ve got a hip that is constantly dislocating, you’ve got a migraine which is making you vomit and see stars, you’ve taken enough prescription medication to tranquillise a horse, and you’re dealing with an allergic reaction from something (and it really could be anything at this point). When I first asked for help, I have to admit that I felt a little ashamed, as though I was being naughty for asking for help. But that’s when I realised we have the saying ‘it takes a village’ for a reason. And in our family’s case, it really does.
But it’s not all doom and gloom. While I may have painted a bit of a dreary picture, I get to see my daughter grow up in a way most people don’t. With any luck, I won’t miss any firsts, and while physically I might not be able to do as much as I want to, I’m still able to raise my daughter to be a kind and considerate human being who is already being exposed to diversity at a young age.
While I may struggle more than most, my struggles don’t define me, and more importantly, they will never beat me.
If you’re intrigued by Ehlers-Danlos syndrome, check this awareness video I was involved in!
What realities are you struggling to come to terms with?

Mental Health Monday: why the stigma?

You may be familiar with the hashtag #endthestigma on social media, used in conjunction with posts about our mental health. Opening up discussions about mental health can reduce the stigma and lead to better understandings of what the issues may be, but why is there such a stigma in the first place?

3 things we can do to help future generations 

#endthestigma

https://player.vimeo.com/video/301598462 #EndTheStigma from Mummy Kind on Vimeo.

1. Remember, your mental health is a disability with the power of invisibility

Imagine instead of depression or anxiety or bulimia, you have a broken leg. Everyone can see your broken leg. Everyone can imagine and envisage how painful it must be, so then you get empathy.
With mental heath conditions, your illness is under an invisibility cloak. Nobody can see it, and very few people can then imagine the pain that you’re in. There’s a lack of empathy, and an attitude of “just get out of bed”, or “you don’t look depressed”.
One way we can stop these ridiculously unhelpful comments is by being open and honest. Not with the world but with ourselves and those close to us. Don’t hide away because you have an illness! This will also enable our children to grow up knowing the issues and with a better awareness and understanding, so that the stigma will be even closer to disappearing completely when their generation are all grown up.
2. Treating mental illness the same as a physical illness

Off the back of the first point, physical and mental illnesses can both relapse! So why on earth are we more afraid of admitting that depression has reared its ugly head again than we are of a chest infection coming back?

I recently went back to my GP to have a chat about my mental health, and he very helpfully explained to me that I must not see medication as a failure, having tried to manage for so long without it. I wouldn’t try to treat a kidney infection without medication so I shouldn’t have to try and treat my depression or anxiety without medication either!

The sooner people understand that physical and mental illnesses are the same, and should be treated in the same way, the better!

3. Don’t let society tell us who to be

Society generally often has an opinion of who we should be or when we should be happy… Well, for starters, you can be both depressed and happy – it is possible! But that aside, societal attitudes have a lot to do with why there is a stigma in the first place.

Emphasising certain attributes on young boys that they have to be tough and cannot show emotion is one thing which contributes to men’s suicide rates being so high! For us females, telling women that they should be happy following the birth of a baby is yet another aspect of the huge circle of guilt that plays into postpartum mental illness!

Teaching our children that they can be what they want to be and that they can share emotions from a young age can really help to alleviate the stresses they will face as adults in the same way that we are under those stresses now.

This post was written as part of our Raising Healthy Minds Campaign

So that is this week’s #MentalHealthMonday post! Get involved with the discussion on twitter and tweet us @mummykindoff

Let us know if there’s anything you do to raise awareness of mental illness! We would love to feature the stories of brave men and women so please get in touch!

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