Tag Archives: ireland

Teaching our children about consent should start in early childhood

The topic of consent is everywhere at the moment, it is an important social issue that affects each and every person, male or female, no matter their age. While I welcome mandatory consent classes on college campuses, I can’t help but wonder whether we are leaving it too late to begin introducing the topic of consent to the young people of Ireland? Let’s face it; the majority of first year college students are already sexually active. Should these mandatory classes be apart of the secondary curriculum? Absolutely. But as parents I feel it is our responsibility to plant the seed much earlier on in life.

I recently watched Louise O’Neill’s documentary Asking for It? If you haven’t seen it yet, you can watch it here. After it’s airing, I began scrolling through comment sections on social media to suss out what the Irish public thought of rape culture and the issue of consent.

Sadly, I was unsurprised to see so many people claim that Ireland does not have a rape culture. People were either too fixated on the word “culture” or almost literally sticking their fingers in their ears and screaming to avoid dealing with this very real issue. It’s such an Irish thing to do, to sweep it under the carpet, no need to make anyone uncomfortable. We have a rich history of turning our backs on painful subjects. Just look at the Magdalene Laundry scandal, for instance. Modern day Ireland is repulsed with how women up until very recently were treated by the Church. We are also disgusted that as a society we kept quiet. This attitude reflects what we are seeing today with women being perceived within a Madonna-whore complex. No, “rape culture” does not mean that as a nation we condone rape. Not. At. All. Of course the vast majority of people believe that rape is a heinous crime and those who carry out such acts should be punished to the fullest extent. Consent is consent and using excuses means we will never tackle the real issue head on.

We have a tendency to victim blame, not just about rape but also in many other situations. Just look at Kim Kardashian’s ordeal in Paris, for example. The narrative wasn’t about this traumatic event a human being went through but rather, blaming Kim for showing off her very expensive jewellery on social media. That she was “asking for it to happen.” The same thing happens to victims of sexual assault.

“Well if she’s going out dressed like that…”

“She shouldn’t have walked home alone”.

“How much did she have to drink?”

“Sure wasn’t she mauling the face off him earlier on in the night? What did she expect?”

Excusing a man’s (or woman’s) actions because they were drunk and saying “he/she would never do that normally.”

Every time these words are uttered we undermine the actual issue.

Growing up in Ireland, I could not go with friends for a night out without the following lecture chanted at me like some sort of protection spell:

“Stay with the crowd, don’t wonder off alone. Watch your drink. If someone is buying you a drink, go to the bar with them.”

As a young teenage girl, I had never been exposed to rape. It was something I only knew about from obsessively watching Law and Order: SVU. It was something that happened in far away lands, not here in little ole Ireland. Then again, I did live a fairly sheltered life.

But, as I began going out more, I started to understand why my mother gave me the same speech over and over again, each and every single night out. Even today at 29, a mother of two children, I am still reminded by my mother to do all of those things. Years ago I would have rolled my eyes at mum followed by a “yeah, yeah, yeah. OK, Mum.” Now?  I make sure I don’t walk home alone on the rare night I do go out. Or if I can’t get someone to walk home with me, I call my husband for the 7-minute walk home. A lot can happen in 7 minutes.

I recently had a discussion with an older relative about rape culture and particularly, victim blaming. The conversation went something like this:

“Women have a level of responsibility to protect themselves,” the relative said.

In a perfect world, it would be great for women to feel comfortable enough to walk home alone at night. It has been drilled into our heads so much that we shouldn’t put ourselves in dangerous situations but how about we start telling young men before they go out to respect any girl they potentially hook up with. That no means no and not try a little harder to swoon her into submission.

Sexual abuse is rarely ever about sex, it’s about power. Assault can happen anytime, anywhere and the attacker more often than not is someone familiar to the victim. 93% of perpetrators are familiar to their victims.

I responded to this relative with a question.

“If a man is mugged in the street at night. Do you blame the man or the thugs that mugged him?”

This made my relative stop and think.

A few days later we went to the woods for a stroll and some foraging. We separated for a few minutes. I noticed a white van with no windows pull up near me. I looked around to see how many people were around me and checked the laces on my runners were tied properly. My male relative didn’t acknowledge the van, as in he didn’t think twice about it. Women all over the world are on edge. We always have our defenses up. Will that guy cat calling follow me home? Will I arrive home safely in this taxi?

When scrolling through the comments section under Jennifer Hough’s article about rape culture in Cork one comment stuck out for me.

It went something like this:

There have been no reports of rape over the weekend so I question the author’s claim that she saw this happening.

One in four Irish women have experienced sexual abuse at some point in their lives. One. In. Four. That’s almost as common as cancer and yet, why don’t we see it in the media more? Victims of assault fear the trauma of reliving their experience during an investigation or fear of being accused of leading the perpetrator on; that they did something to ask for the attack. According to the Rape Crisis Centre Network of Ireland’s (RCC) 2014 statistics 33% of survivors contacted the police about their assault. According to the Sexual Abuse and Violence in Ireland Report (SAVI), only one in ten sexual crimes are reported in Ireland. Of that one in ten, only 7% secures a conviction. Less than 1% of victims of sexual crime in Ireland get justice.

So, just because we don’t see it in the media everyday, it doesn’t it’s not happening.

Consent is a hot topic and Louise O’Neill’s documentary resulted in the subject being discussed everywhere-amongst friends, on social media and in the news. The end message is we need to teach young men about consent just as we teach women to protect themselves. We are now seeing mandatory classes in collages being taught about consent but should we wait until most young people are already sexually active before we introduce the idea of consent to them?

Just the other day my 7-year-old son was trying to get his 19-month-old sister to give him hugs and kisses. She was shouting no but my son kept trying. At that age of course there was no malice in his actions but something clicked. This is where it begins. I told my son there and then that if his sister didn’t want hugs and kisses and she is shouting no that it meant no and to stop. I want him to understand that now, not when he’s a teenage boy. No means no. We see it all the time, relatives practically forcing children to show them affection. Why are we so pushy for physical affection? Children are not property. We have no right to hit them so why should we force them to hug and kiss us? It is their body. It is their choice. Their feelings about their personal space matter as much as any adult’s.

It all starts in childhood. We need to teach our children that our bodies are our own and nobody, not our parents or siblings have a right to invade our personal space or have forced affection brought on them. Parents often tell their children to let them know if anyone touches them inappropriately. Abuse often starts with uninvited touching, hugging or stroking. If we force affection on a child who clearly doesn’t want it, it can be confusing for them to know when something is inappropriate. Forced affection doesn’t show children we love them, it shows them that we can do as we please with their bodies.

If you don’t believe the idea of consent should be introduced to children just take a look at the figures from the 2014 RCC report:

52% of survivors aged 13 to 17 were subjected to rape

15% of perpetrators were under 18

9% of survivors attending crisis centres in Ireland were children.

Waiting until our children become young adults to discuss consent is too late and the figures reflect this.

Although parents or relatives have no intention of harming a child, nor do they think they are doing anything inappropriate; we are teaching our children that an adult or other person’s want for physical affection is more important than their own comfort and safety. It starts as early as toddlerhood; we are laying the groundwork for behaviours that continue into adult life. Teaching our children that no means no could potentially save them from assault later in life. It could also empower young people to have sex only when they’re ready to.

We don’t see physical interaction amongst children as a problem until it’s too late. They tickle, they force hugs and rarely they mean any harm. But every parent has experienced an occasion where their child has either been subjected to touching they didn’t want or have been the ones to force the affection or tickles. So how can we introduce consent to children without going into too much detail about sexual abuse?

We need to teach our children to ask for permission to touch another person. “Is it okay if I hug you? Or “Can I have a hug?”

This teaches our children to ask for permission and it also teaches them to think about their actions before they do them.

We need to teach our children that consent can be taken away too.

Adults know all too well, especially parents that we have days where we feel “touched out.” Kids have those days too. They may have been very affectionate and willing to accept affection the day before but they are well in their rights to tell someone that they don’t want to be touched today. This maybe confusing for other children so it is vital that we show them that it’s OK to change your mind.

A child should never be forced to show affection to another person.

It is a common occurrence that children are told, “go give Nana a hug” or “give Aunty a kiss”. Children are eager to please so they may oblige but that shouldn’t be the case. No matter how familiar your child is with someone, he/she should feel comfortable enough to say no. Given that 93% of cases involve a person the victim is familiar with, it is important that we validate our children’s feelings and respect their decision. Under no circumstances should you guilt a child into giving you affection. Don’t pretend to cry or be sad. So many of us are guilty of this. I know my husband and I have been guilty of this. Humans need touch, we are social creatures but it isn’t really affection if you force or guilt a child into it is it?

Not saying no doesn’t mean yes.

As discussed, children are eager to please so they may do something they don’t really want to do to please a friend, teacher or family member. You may think your own child has no problem saying no but they may not be so forthcoming with someone other than you. Our children must also learn just because they don’t hear a resounding no that it means they can go ahead with that hug or kiss.

Practice what you preach.

Lead by example. Children imitate what they see in their day-to-day lives. If they see Daddy (or Mommy) force affection on to one another, the idea that it’s OK to do that is solidified. Many couples will force a hug or a kiss a form of tomfoolery and no there is no ill intent but still, it is important for us to show our children that we should respect everyone’s boundaries.

Further reading and helplines:

http://www.rcni.ie/wp-content/uploads/RCNI-National-Stats-2014.pdf

Rape Crisis Centre helpline:

1800 778888

or see the website www.rapecrisishelp.ie.

Until next time,

Z.M.

 

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11 Crazy Things People With EDS Have Heard

I spoke with some fellow EDS zebras about some of the down right crazy things they have heard from health care professionals, friends and family about their condition. Comment below if you have anything you’d like to add to the list.

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1. You have EDS because you’re vaccine injured.

No. Just no. A vaccine isn’t going to alter my genes. Shoo! EDS is genetic. GEN-ETIC.

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2. You have EDS because you’re possessed.

Seriously. This came from a chap who works in my local takeaway. Offered to make me herbal blends to cleanse my soul. Thanks, but no thanks, mate. Stick to making pizza, k?

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3. You obviously have Lyme disease. That triggered your EDS.

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Yes, there are some overlaps with EDS and Lyme but the latter isn’t going to cause your collagen to magically turn into a chewing gum like consistency.

4. You have EDS because you’re stressed.

I was told the stress of my wedding caused my EDS. If that’s true then EDS must be far more common! We should all stay single. Job done.

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5. You’re husband is a lucky guy.

*insert pervy wink here* Shockingly, this came from a Doctor!

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This is the extend of my bedroom antics, Doc. Seriously, I’m more likely to pop out a hip than to climax.

6.You’re sick because you’re in a bad relationship

This was in the Doctor’s office and my husband was sitting right next to me. The only bad relationship here is with this Doctor.

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I mean, talk about awkward. If a Doctor was genuinely concerned about the patient, wouldn’t they wait until their patient was alone? Nobody is going to admit they are in a bad relationship in front of the person they are in a relationship with. Anyway, the point is martial issues are never going to cause a person to dislocate a joint.

7. You’re too young to be sick

Yes, because that’s how chronic illness works. You wonder if these health care professionals obtained their degrees from the bottom of a cereal box. Do you even science, bruh?

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I’m too young? Hold on a sec while I tell my body that I’m not actually 90 years old.

8. You’re too short to have EDS

I think you’re confusing my condition with Marfan Syndrome.

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9. A holy man once surrounded my hospital bed with his followers they started to chant and pray.

Well, that’s just creepy.

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Here, while your at it, could you pray for me to win the lottery so I can pay for my very expensive medical treatment? Oh it doesn’t work like that? Silly me.

10. Your son has EDS because you’re a bad parent.

Like, what the actual F?

The child’s mysterious problems are from his mother yelling at him and letting him get away with too much all at the same time. This was said by a paediatric consultant!

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11. Someone assumed because I was in a wheelchair that I was mentally affected.

I was seen in the wheelchair while being pushed by my husband and this old man saw me in the chair and automatically thought I had an intellectual disability. We had our dog with us and looked at me and said (in baby talk voice, no less) “is that your cat? Hah?! Is that your cat? What a lovely cat hah? HAH??!”

 I just looked at him smiled and said nicely “yeah funny looking cat, no?! The poor man looked shocked. He just said, “have a nice day” and skootled off quickly.

What do you do in a situation like that? Laugh? Cry? Both?

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Has any thing like this happened to you? Let me know in the comments!

Share this with your friends and family to help educate them.

Until next time,

ZM

X

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You know you’re breastfeeding a toddler when..

It’s National Breastfeeding Week! I love this time of year because my Facebook timeline is filled with beautiful pictures of children having milky cuddles with their mummies. Of course this week also means there will be heated debates under articles, such as this one. This week is not about debate though, it’s about celebrating and promoting breastfeeding. And boy, do we need to promote the sugar out of breastfeeding. In Ireland just 1-2% of one year olds are breastfed. The low breastfeeding rates is costing our Government approximately 800 million Euro each year. The HSE and World Health Organisation recommends all infants are exclusively breastfed and then fed along with solids until at least two years old.

Breastfeeding a toddler is so much fun! Nursing can be challenging at times but things change once your little baby becomes a toddler, breastmilk is no longer just about nutrition but immunity, comfort and so, so much more. Scientific studies show that the natural weaning age is anywhere from 4-7 years of age. The average weaning age world wide is 4 years old.

You know you’re breastfeeding a toddler when..

1. Your child finds new and interesting positions to nurse in. 

Before now, you had your go to position, whether it was laid back or a rugby hold, you had that position down. Long gone are the days when you felt so awkward, perfecting the latch and then meeting your baby’s eyes with a loving gaze.

Now? Feet in your face, feet in your mouth, feet in their mouth. Nursing has become a yoga extravaganza. You wonder to yourself “HOW THE HELL CAN YOU BEND LIKE THAT?!” In breastfeeding circles we call this act ‘Gymnurstics’. If only it was an Olympic sport.

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2. Your child thanks you.

Especially when you don’t ever expect them to. The fact that they know it’s something they love and appreciate, innately astounds you.

3. You feel less like a mum and more like a buffet table.

With child hopping from “dis side” to “dis side” every ten seconds, you start to wonder if your boobs provide different flavours! Chocolate and vanilla perhaps?

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4.You’re nursing two toddlers and

They argue about who is getting which boob and agree on a compromise.

5. You post this infographic every time someone says there are no benefits to breastmilk after 12 months:

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or this one

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It’s actually crazy how many health care professionals tell mothers that nursing passed 12 months is only for them and there are no benefits to the child. As you can tell from the graphics above, there is an abundance of benefits in full term nursing. There is also amazing benefits for mom too. Check it them out below:

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6. Your toddler has their own word for your milk.

My little girl asks for “boob” at 17 months but I have heard the cutest ways toddlers ask for milk like “bainne”, “mama milk” and”milkies”, to name just a few.

7. Nipple twiddling becomes a game.

No matter how many people think it’s “weird”, “gross” or “wrong”, there is a biological purpose for nipple twiddling. Children twiddle nipples or slap mother’s breasts to stimulate the let down of the milk. However, many toddlers turn this into a game by seeing just how far mommy’s nipples can stretch out. It’s hilarious until you realise you haven’t trimmed their nails in awhile or you get sprayed in the face with your own milk. Hey, at least you’ll have some awesome skin!

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8. You’re so amused when people find out you’re still nursing and they recoil in horror.

It’s very amusing to hear people criticise “extended” breastfeeding, especially when their own toddlers are sitting across the way from you with a dummy or bottle in their mouths. We are the only mammals that don’t let their young self wean and we are the only mammals that drink the milk of other species. It’s ironic really that mothers of breastfeeding toddlers are criticised yet full grown adults drink the growth fluid of calfs. Many people are under the impression that breastfed toddlers and older children are only being fed breastmilk. While yes, it is an amazing source of nutrition, children over a year do need to have a healthy diet of solid food in addition to their mummy’s milk. A lot of people also believe (without any basis for their thoughts) that breastfed toddlers will be “clingy” and will have psychological problems when they’re older. This is not the case at all. Studies show that breastfed children are protected against mental health problems and addictions.They tend to be higher in intelligence and more emotionally secure than children who were not breastfed.

Following on from that

9. When you’re asked how long you’re going to continue to nurse for.

When somebody is being rude asking me that question, I’ll usually answer with something sarcastic like “We will probably wrap it up when she starts college.” For anyone who is genuinely asking I tell them that we will stop when we are both ready. It’s a two way relationship. Feeding a toddler makes life so much easier. I’m not sure how we would deal with tantrums and illness without breastfeeding. It really is the answer to so many problems.

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10. When they learn how to unclip your bra and help themselves.

This aspect of feeding a toddler is simply brilliant, especially at night. If you’re cosleeping and breastfeeding your child will eventually learn how to get your top open/up and latch on while you’re still sleeping. Studies show that mothers who breastfeed and co sleep get more sleep than mothers who don’t. Who doesn’t love extra sleep?

11. Your toddler feeds their dolls/teddies/toy trains and even cats.

There is nothing sweeter than seeing your toddler pretending to be mommy and lifting their top to nourish their baby dolls. It’s amazing to see natural instincts kick in when their babies are “crying”. My own daughter recently chased the cat around the house with her top up screaming “nummy nummy num”.

If your toddler isn’t feeding their toy, they’re getting you to feed them. Lying down with your toddler latched on one boob and some inanimate object resting on the other.

12. Your toddler learns that other people have nipples too.

Recently my daughter realised Daddy had nipples too. She stared at them for a few minutes. Daddy and I waited to see what would happen. Of course I was trying to convince her that Daddy has milk too while he was trying to tell her he didn’t. After a couple of minutes, she opened her mouth (very reluctantly) and went for a taste. She was immediately put off my the hair that surrounds Daddy’s nipples.

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and finally

13. Your toddler and your husband have a lot in common.

The sight of bare boobies makes your toddler giggle, squeal and clap. Motor boating is also a favourite past time.

A final word..

Feeding a toddler brings so much joy but quite often comments made on social media or from friends and family can be really off putting. Women are called pedophiles and weirdos just for simply following their biological instincts and doing what is best for them and their child. It’s a sad reality that breasts are used to sell everything from cars to food but should a woman use them for their biological purpose, they are abused. Breastfeeding is in no way sexual and anyone who thinks so should take a class in Biology. Would you scoff at a dog feeding her 8 week old puppies? In human years, that would equal to a toddler. Even cows, when left alone will feed from their mothers for up to four years. We don’t respect our mammalian instincts anymore.

We rarely see full term breastfeeding in our everyday lives. Where we see it most is in films or TV shows and the characters are usually portrayed as really radical hippies or weirdos. Take Game of Thrones, for example.  The feeding of a 10 year old is pretty unrealistic. Children loose the ability to correctly latch at around aged 7. Ever wondered why they are called milk teeth? When a child looses their milk teeth, this is right about the age where they would naturally wean. Hence the natural weaning age is between 4 and 7. Portraying full term breastfeeding in a negative way does nothing but hinder the acceptance or normalisation of the act.

It is really only in the West that we have such a problem with breastfeeding.

“In Mongolia, there’s an oft-quoted saying that the best wrestlers are breastfed for at least six years – a serious endorsement in a country where wrestling is the national sport.”Read more about this here.

There is no reason you need to stop feeding your baby once they hit 12 months, unless you want to. If it feels right for you and your baby, go for it and feck the begrudgers.

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Our medical trip to London. Part 1

So, I’m sitting on a plane at Heathrow airport. As I stare out the window and listen to the rumblings of the engines preparing to take us back home, I reflect on the last few days.

I have been running on adrenaline, will power and strong cups of coffee to let my family enjoy the experience of everything London has to offer. I know they wouldn’t have gone sight seeing if they knew just how unwell I was. I can’t hide it now though. My pelvis has separated, which it does every few days or with exertion. My wrist popped out and is now painfully bruised. I am emotionally and physically drained.

We arrived in London on Tuesday evening. Weary after our drive from Cork to Dublin, I was looking forward to getting to our hotel in the Premier Inn Earl’s Court and hopping into the bath for a soak. Ollie Pops N’Clicks had other plans..

In addition to inheriting all my wonderful genetic gifts, she also inherited my inability to travel without some form of sickness cropping up. Yup. Right there on the packed tube, close to me in the sling she vomited. And I mean vomited. Like ‘Team America’ vomited. It just kept coming! How could someone so little bring up that much puke?

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The smell. Christ. Just what I needed. I look over at my husband only to see him laughing. Then everybody else in the tube noticed what happened and began to laugh too. Frickin’ hilarious, lads.

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We hopped off the tube so I could clean myself up as much as possible. We eventually made it to the hotel in one piece, just. Ravenous, we dropped off our bags, got washed up and went to the restaurant for a pleasant dinner.

I didn’t sleep so well that night. The next afternoon Bendy Boy and I would be meeting the Professor Grahame. I met him once at a conference in Cork. He was just as sweet and gentle as I had remembered. The Professor knows all too well the struggle Irish zebras face, almost total abandonment from our own Government and healthcare system. No specialists and the majority of tests needed are simply unavailable. We don’t even have an upright MRI machine.

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After an examination and a very long chat, the Professor confirmed Bendy Boy’s diagnosis of EDS Hypermobility Type. It was also noted that the six year old shows signs of Postural Orthostatic Tachycardia Syndrome. When Bendy Boy stands up, his heart rate rises and his feet pool with blood. I was shocked to learn of the POTS signs as he has never complained of feeling dizzy except when he gets out of the bath. I was surprised I didn’t notice the pooling.

The Professor seemed impressed with my knowledge and understanding of medical terminology. When there are no experts available to you, you have to become your own expert.

Here is an excerpt from my own medical report:

“On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale her shoulders and hips (borderline) are also hypermobile, as are her feet which flatten and pronate on weight bearing. There is a non-significant 2° scoliosis on the Bunnell scoliometer, but no other features of a marfanoid habitus. Her skin is soft and silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are numerous thin scars from knee scrapes acquired in childhood and similar over her elbows. Striae atrophicae were first noted by her at the age of 18, and she has minimal striae gravidarum despite having had two full-term pregnancies, a pointer to EDS. Gorlin sign, ability to touch the nose with the tip of the tongue is positive, and the lingual frenulum is rudimentary, both pointers to EDS. She scored very highly (25/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. Her blood pressure lying was 124/84, pulse rate 66; standing 124/84, pulse rate 80. This rise of 14bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS. The evident pooling of blood in her toes on standing is further evidence in favour of PoTS.

On the basis of the clinical findings I have formed the conclusion that Yvonne is suffering from a heritable disorder of connective tissue, the Ehlers-Danlos syndrome hypermobility type, a diagnosis that was established by Dr Mulcahy in 2013. I explained the nature of the condition to her, in particular its genetic basis and the vulnerability it confers on soft tissues to the effects of injury and overuse. In her case it has resulted in longstanding widespread joint and spinal pain. Since the time of her first pregnancy she has suffered a secondary chronic pain syndrome, a frequent occurrence in this situation. It is likely that her bowel symptoms represent an EDS-related intestinal dysmotility, and almost certainly she has PoTS.

There is a concern about the possibility that she might have craniocervical instability on the basis of left-sided weakness, headaches, and paraesthesia in her arms and legs. In addition she feels that her head feels too heavy for her neck. With this array of suggestive symptoms I have agreed that we should proceed to an upright MRI examination, and I will be requesting this at the Medserena Upright MRI Unit for her to have one on a future visit.”

And Bendy Boy’s report:

On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale his shoulders, cervical spine, hips, fingers and big toes are all hypermobile, as are his feet which flatten and pronate on weight bearing. There is a non-significant 3° scoliosis on the Bunnell scoliometer. Other features of a marfanoid habitus include a pectus excavatum, and hand-height and foot-height ratios both elevated to within the marfanoid range. I interpret these findings as indicating an incomplete marfanoid habitus, which may become more obvious as he completes his adolescent growth spurt. This should not be taken to imply that I feel he has the Marfan syndrome as the habitus is widely distributed throughout the family of heritable disorders of connective tissue. His skin is characteristically soft, silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are no paper-thin scars of note. Gorlin sign, ability to touch the nose with the tip of the tongue, is negative. The lingual frenulum is present (normal). He scored moderately highly (12/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. His blood pressure lying was 96/53, pulse rate 75; standing 102/62, pulse rate 85. This rise of 10bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS.

On the basis of the clinical findings I confirm that Alexander shares his mother’s phenotype and diagnosis.”

While I was being examined, Ollie Pop (16 months) decided to stand up on her own for the first time!  And I missed it. Thank You, EDS!

Receiving the confirmation of EDS HT and the noted symptoms of POTS given by Professor Grahame will hopefully bear weight in accessing services here in Ireland. Although, I won’t hold my breath. My GP was happy to hear that I took the plunge going to the UK and she’s very interested in my case. It took a long time to find a GP that genuinely cares. While a weight has been lifted knowing that I definitely have EDS and haven’t been misdiagnosed for the hundredth time, there is a fear. The idea of having cervical instability or Chiari freaks the sugar out of me. This last trip cost roughly 5,000 Euro. The next trip will be double that again. If Chiari is present and significant it may mean I will have to take a trip to the US to have surgery. We will just have to wait and see.

Coming home to Ireland, it is wet and windy. It’s miserable. The weather here reflects how I feel about Ireland and it’s healthcare system.

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Now that I’m home I don’t have access to the fantastic services and more importantly the compassion I felt in London. I felt so at ease.

I am fundraising to get back to the UK in the new year for further testing. I will give details of these in Part 2 along with the rest of my tale. If you can donate anything at all, just click on the link below. Even sharing our story would be a massive help.

https://www.gofundme.com/2befu24c

So, until next time,

ZM.

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Tongue tie DOES affect breastfeeding

 

I never thought I’d be brave enough to share this photo but after much encouragement from friends to share my story, I apprehensively upload it. If it helps one woman get through a rough patch, then it is worth any possible embarrassment. This was me when my little girl, Ollie was three weeks old. I was exhausted, actually I was beyond exhausted. I was a zombie trying to disguise myself as a functioning member of society. I was pumping every two hours to get what little breast milk I had to feed my precious little girl. She had an anterior tongue tie that meant she could not physically latch.

After she was born, I knew something wasn’t right. Her latch felt shallow. “I’m pretty sure she has a tongue tie,” I said to the midwife. The midwife glanced inside my baby’s mouth. “No, no, she doesn’t.” As if I was some silly little girl that didn’t know what she was talking about. This isn’t my first experience of tongue tie, lady.

The next three days in hospital were the worst of my life. I began expressing colostrum. One of the younger midwives was very kind and helped me. While I hand expressed milk, she knelt beside me with a syringe and sucked it all up. My baby was having on average 1ml an hour. That didn’t worry me though as I knew baby’s tummy could only hold only a few millilitres at a time anyway. There was a suggestion of giving her formula. At that time I said “If her blood sugars are low, we will talk about it.” Her blood sugars were fine so I continued pumping every hour on the hour. I was exhausted but I was determined to get through this.

 

Formula was mentioned another couple of times so I was eager to get the f**k out of that hospital. If I wanted to breastfeed no way was I going to be successful stuck in there, with half arsed support. I knew my daughter had a tongue tie and the midwives were clueless, shoving my daughter’s face into my breast in frustration.

I rang a private lactation consultant who I had a good relationship with through my work as a health reporter. She confirmed that baby had a significant tongue tie and that it would need to be clipped.

We travelled an hour away and paid €200 to have my daughter’s tongue tie clipped. It was the most expensive two seconds of my life. The GP who performed the procedure said that it was one of the worst anterior tongue ties she had ever seen and that my daughter’s tongue was pretty much non functioning.

 

 

Those words..non functioning. Meaning my daughter would have had a plethora of problems later on, including her speech. Now, imagine if I wasn’t as well informed and educated and I had been and I had taken the midwife’s word that my daughter’s latch was fine. Imagine I wasn’t determined to breastfeed. I would have given up within the first 2 days. The only reason I was so well informed this time is because I found out my son had a posterior tongue tie when he was 3. I only managed to breastfeed him for 2 weeks. Feeding with his tongue tie caused my nipples to blister, bleed and crack. I cried at the very thought of feeding him.

 

After the tongue tie was clipped, my baby’s latch was getting better and better. As Dr Jack Newman says “babies learn to breastfeed by breastfeeding.” It was just a matter of time and practice for the two of us. I was continuing to pump still as it takes up to 2 weeks for baby to learn how to latch again.

By 6 weeks she was exclusively on the boob and we were both so happy. I was so happy to sleep again! Instead of waking up every two hours to pump a couple of ounces, I kept baby close in bed with me. When she woke, it was just a case of popping boob out, latching her on and drifting back to sleep.

 

There is no doubt that tongue tie affects infant feeding. It can affect bottle fed babies too! There is a question over whether lip tie affects feeding but anecdotal and some scientific evidence suggests it might. It needs to be explored further.

Both my children have lip tie. Ollie’s lip tie is pretty significant but it doesn’t affect our feeding, thankfully. You’ll notice the people with significant lip tie immediately, they have a gap between their two front teeth.

The thing is, I’m not angry at the staff in the maternity hospital for letting me down. I’m angry at the whole system. Our health care professionals including midwives, public health nurses, dentists, consultants and GPs all need training on this subject. Too many women are being fobbed off and it is affecting the health of our children. It’s also costing the government €12 million a year! That’s how much we would save if all Irish women breastfed. But, at present we are doomed to fail. Things won’t change until support is increased and training is up to date amongst health care workers.

If my story rings any bells please do not beat yourself up for not being able to breastfeed. Don’t feel guilty, feel angry! You were let down! Once you come to this realisation you can use your own experiences to help other mothers. Breastfeeding is a learned and skill and yes its bloody hard in those first few weeks but it isn’t meant to hurt! No matter what your aunt, grandmother or friend says. If breastfeeding hurt, we would have never survived as a species. Think about it for a second.

If you are having trouble breastfeeding please contact Le Leche League or a lactation consultant.

Without my lactation consultant, I would have never made it to this milestone of six months. The help is out there, go seek it.

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