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Saturday, 2 February 2013

Holland can Feck Off

Lots of you will know the poem, "welcome to holland". Well at the moment I am not managing very well grappling with my Dutch phrase book and my map has a massive whole in the middle so I have no idea where I am going. Problem is, anyone I ask doesn't know either.. There's no label, no diagnosis.

"Just say Global Developmental Delay" I am told. Thats a bit like being told to pretend I am in Spain rather than Holland or the Italy I signed up for as Tiddler is doing so very well in so many ways. Squeezing her into a label for convenience just isn't on.

So we'll carry on, fighting her corner, shouting loudly.

In the meantime, it seems there are bigger gaps than we had thought between her actual abilities and those "expected" of her. This makes it all the more important for those healthcare pros to do their thing, do what they say they will do, and see past the lack of labels to the reality. My little girl has a world full of energy, talent and promise but we need help to unlock it all.

For those of you who don't know about the poem I refer to above here it is:


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thanks for reading

Thursday, 18 October 2012

Supermarket Rage

When I am Prime Minister, I will be introducing stiff penalties for all those lazy inconsiderate people that park in parent and baby bays at supermarkets.

It really gets my goat. When they have circled a car park for 10 minutes, while singing desperately to a screaming baby and trying to placate a toddler with the promise of snacks, well *maybe* then we can talk.

Until then, if these selfish drivers, both men and women, could try and park in one of the HUNDREDS of other spaces available and use one of the HUNDREDS of shopping trollies available, that would be grand. Maybe then I can park in one of the 15 parent and baby spaces, you know the ones near the ONLY trollies I can use with a baby and a toddler.

"Online shop!" I hear you say, I do when I can, but we all need to top up now and then.
I could use my pushchair, but that would mean I could only use a basket, that's if I could get the children out of the car in the first place.

So, the next time you dash to Asda - yes it was Asda- for a pint of milk please spare a thought for the frazzled mother cajoling her children into the trolley. It could be me, and I could really do with that parking space.

Sunday, 14 October 2012

The Frustrations of being a Stay at Home Mum

When I was growing up I wanted to be an Air hostess, Prime Minister, Lady Diana, an RSPCA worker feeding lions (I know, I know).

When older I was going to be a solicitor or barrister, possibly work in government policy. I had high hopes for myself, others had high hopes for me. Life did life's thing. I was thrown a couple of curved balls, dodged some and were clipped by others and thrown off course. I was floored by one or two experiences, too painful to blog about. The nature of my life experiences meant I have spent a lot of my adulthood running, hiding and avoiding -a pattern of behaviour that has shoehorned me down a narrow and undemanding career path and at times imprisoned me on a progressively eroding island where I'm scared of my own shadow. The island I live on is at times tiny, a very safe existence with no risks or danger. It's not a very happy place though and I still sometimes suffer from anxiety attacks. I am a great disappointment to my teenage self, the one who could conquer all, who would be a high flyer, who was unstoppably determined.

So why all this navel gazing? It was never in my plan to be a stay at home mum. That's what I am: a SAHM, homemaker, housewife. I love being a Mum, of course I do, but what else do I do? What else can I be proud of? How do I use my brain, or rather remind myself and the outside world that I have one! I don't want my daughters to grow up thinking that Mum is "just" a mum. As I have two children under 2 years old any serious career is a little way off, but in the meantime I need to address the small issue of my self esteem that is currently scraping the floor. I am fiercely proud of Tiddler and how much she has overcome. I need to borrow a little bit of her fight. I want to be happy about who I am and what I am. I think I would have reached this point even if I hadn't been blessed with children, but being a Mum within four walls for what seems to be so much of the time has brought my lack of self-belief into sharp focus.

Where do I start? Someone on Twitter told me about 101 things in 1001 days, this seems like a good beginning. Who's with me?

Undiagnosed or No Diagnosis to make?

So baby is 12 weeks old. At 12 weeks with Tiddler we had only just about left hospital, she was behind in development already and things were very uncertain.

This time round, Baby is developing normally we think, although I will admit to a niggling worry about her tone. her arms, particularly the left, is very rigid- the exact opposite to Tiddler, she sometimes lets out a cry when we lift her out of a chair. Also, she still has head lag from being lifted from the floor. It took Tiddler about 12 months to lose this, and it was always commented upon as being unusual. That baby also seems to have this is worrying me. Does this suggest a link, a genetic problem they share?

This may appear hysterical or disproportionate but just as with an undiagnosed child you spend the whole time wondering if *that* symptom or quirk is *the* missing piece to the Tiddler jigsaw, so I find myself wondering if similar physical attributes or features point to a genetic wobble that the siblings share.

Despite everyone telling me, and me believing most of the time, that things are different with Tiddlers little sister, I can't quite believe that this is the case. How can two children be different like this? Of course, this is a stupid thing to say, you can have very different siblings, but I suppose because there is no explanation for the way Tiddlers start in life went, I cannot rationalise that the two are so different as to not share the same problems. If there is no genetic issue, then why has it all happened to Tiddler in isolation??

I suppose it all goes back to our need to explain and find a reason for everything. Scientific advances have encouraged us to believe that nearly all questions have answers, so when one finds a question without an answer we struggle. We no longer attribute things we don't understand to fate or God, we want reasoned answers for everything. Of course, not everyone finds their answers and so are left lacking and searching rather than living in the moment.

Tuesday, 2 October 2012

A Good News Day

In the past this blog featured quite a lot of bad news and sadness. I wrote last night about how I had been avoiding what was once therapy for me.

I have lots and lots of good things to say. I suppose part of me has felt guilty that we have a happy ending when others with an identical start to Tiddler do not. Please don't misunderstand me, there are still differences, problems and hurdles to overcome but compared to what we had been warned to face, she is flying.

Tiddler is now 22 months. Where did that time go? She is a cheeky and mischievous toddler who likes dancing and bananas and Mr Tumble, in no particular order.

2 weeks before the arrival of her little sister she got up and walked. Literally. She had been cruising for a while, and whereas we had been warned she may not walk, it had been clear for some
months that her physical development was improving at a faster rate. She stood up unaided in the middle of our lounge on the Thursday and by the Saturday had taken her first steps. I just couldn't believe it. I couldn't believe that my little Tiddler had proved everyone wrong again. I wish I could bottle her drive and tenacity.

She has been walking for 3 months now and is increasing in confidence all the time. She is close to being signed off physiotherapy we think and with that her weekly hydrotherapy. This will be an incredible moment for me as she has been receiving physio since she was 10 weeks old!

We await our next genetics appointment with great interest. I am even saying out loud that maybe they have made a mistake and actually there isn't anything defective in her genes? Maybe there is no genetic disorder?

In the meantime we have her sensory issues, poor weight gain, ENT problems and behavioural issues so I know we have enough to keep us quiet for now!!

I have been unsure whether to write about Tiddler's progress but decided that it's only fair to document the positives as well as the more difficult times. I do feel guilty about our happy "ending" which is strange as I am sure parents of "normal" children don't feel guilty about their normality...

Sunday, 30 September 2012

Birth Story, Flowers and Balloons

I have been deliberately avoiding this Blog. Especially a few months back when I was so scared about the impending birth and how my second pregnancy would continue. It was a superstition, as if I wrote my fears down they may happen. Blogging was no longer a therapy, it was as if it was a means to trick me, to catastrophise to actually make an unhappy ending more likely.

Latterly I have been too darn busy to blog, and too shattered at night certainly. I am grabbing a rare moment of peace to update and I sincerely hope I shall be able to keep it up again!


As Tiddler was induced at 38 weeks, I was convinced that this baby would also come early, whether naturally or not. In fact, this time round I also had a couple of scares resulting in an overnighter and increased monitoring as there were fears that I was losing amniotic fluid, as happened at the end of my first pregnancy.

In the end, I was booked in for an induction after a "stretch and sweep"
- as glamorous as it sounds... And managed to get this booked in at 40 weeks which was down to a combination of my anxiety, what happened to Tiddler shortly after birth, stress over childcare for Tiddler if my baby arrived too late, being Strep B positive and just having a very understanding Consultant.

So, the date was set for Saturday- my actual due date. As soon as the date was decided I was terrified. Terrified of the what ifs, but obviously knew we had to get the baby out!

It's funny, this time round I was less scared (I had been terrified first time round) but almost more so in some ways as I knew what to expect!

The hospital was full to bursting that weekend and I was told I could not come in yet but to call in another 4 hours when they would be confident that the situation would be different.
It wasn't and it took 2 further days for me to get the "ok" and get admitted. When I asked later why this was, I was told that it was down to sheer numbers of women in labour, that there is no longer a quiet time, that every day is a busy one.

Eventually, I got the call and was asked to go down immediately-luckily we live very close to the hospital!

As soon as I was shown to my room and met the Midwife it was clear that they thought they had a "right one" on their hands. I couldn't stop shaking, was asking probably very annoying questions and was shall we say "high maintenance".

The anaesthetist was asked to come and see me, they were anticipating me needing an epidural/spinal block, for no other reason than I was coming across as a high maintenance whinge-bag (think the nightmare woman on One Born Every Minute)

After anti-biotics were administered via a drip because I had recently been found to be Group B Strep positive, the Midwife broke my waters.

I had practised and used Natal Hypnotherapy for my first labour, I found it brilliant, and this time round I had been practising with my CD every day too. The CD was put on a loop, hormone drip was in, TENS stuck on my back.

Pretty quickly the pain was intense. INTENSE. I had to try very hard to remember the principles of natal hypnotherapy but I did manage to "zone out" for a while. After what felt like really not very long at all I was questioning my ability to carry on. This was of course probably the transition stage but you never think that at the time, do you?!

The midwife was also obviously doubting my abilities as she scurried off to find aromatherapy oils to calm me down. Nice of her, but I didn't really need calming down, I needed the pain to stop! It was at this point that I started to panic... Why wasn't the hypnotherapy I had practiced so dilligently cutting it this time? I was now thinking epidural and was really really struggling. I remember saying several times that I was never doing this again... So much so that at one point the Midwife finished the sentence for me ".. We know. You are never doing this again..."

I don't remember what I measured at this point but at 7pm a new Midwife came in and the handover began. At about this time there was some concern as the baby's heartbeat kept dipping when I was contracting. A clip was placed on the baby's head to monitor the heartbeat more reliably. Still, the heartbeat dipped and it was decided that this was because the baby was dropping during contractions and moving down. I got pretty scared at this point. The midwife seemed concerned and I remember thinking just give me a caesarean quickly and get the baby out! At about this time, the pain in my pelvis was excruciating and the newer Midwife changed my position to lie on my side which really helped. The clip on the baby's head helped them to ascertain that the baby was safe.

It was about this time that I was offered gas and air. After the first inhalation of this I was hit with a pleasurable giddy feeling. In retrospect I was offered this really quite late in the day! When I had been measured before the handover was taking place I was told I would have the baby at about 9.45pm. Not at all long after this I was measured and told I could push now if I wanted!!

This panicked me- I couldn't push- they were doing their handover... I had to hold on till they were ready (!) According to my husband I did feel ready to push pretty quickly. The actual pushing took longer I think this time round.

I had 2 Midwives for the actual delivery as it was still handover time. The big push lasted about 15 minutes I think with an hilarious moment when the head only was out and my half -born baby started crying. I remember commenting that I thought that was weird!

The baby was delivered actually pretty easily, no stitches, no problems. The entire labour took 3hrs 33 mins. I was very proud to have done this without stronger pain relief than TENS and Entonox. In retrospect, the natal hypnotherapy must have helped me cope with such a fast and intense labour. I am certain that without the visualisation techniques I learnt from the CDs and my tutor, the pain would have been completely unmanageable and i would have resorted to an epidural.

My brand new little girl was laid on me straight away for skin to skin contact which was fabulous and I instantly fell in love. Cliche but true. Her colour was very grey which worried me especially given our history with Tiddler but I was assured this was ok and probably down to the speed of delivery. Indeed she had little pin prick dots over her forehead and head for some days afterwards, again due to the speed of delivery.

Because of our previous problems we were supposed to be held on the labour ward for 12 hours after delivery. It was clear this couldn't happen because they were just so desperate for space. We were fine with being moved onto a ward with the proviso that she would still get a full paediatric check that night as had been requested by Tiddler's paediatrician.

Whilst waiting to be buzzed into the ward I had the most horrific feeling of dread and panic. Obviously it was a place we hadn't been to since everything went wrong with Tiddler and I had not anticipated it to bring back the memories that it did.

When in the ward we settled in to wait for the Dr. The baby is part of the CONI programme - Care of Next Infant - as Tiddler had life threatening apnoeas and so we had an apnoea monitor to use from birth. This was however defective and so I felt I couldn't sleep in case she stopped breathing.

SCBU was really busy as well as the delivery suite and so we had to wait until 5am for a Dr to come and check baby. All of this time I was alone, blissfully gazing at my baby, but too scared to sleep. Too scared that if I slept the same thing that happened to Tiddler would happen again only this time I wouldn't be awake to get help. So I stayed awake. Luckily it was peaceful in the ward and baby was content.

The initial paediatric check was completed and there were no initial concerns. This was a massive relief. In the first few hours after birth I had been told several times that every baby is different, that there is no reason to believe there would be a repetition of events. Every child is different of course as is every pregnancy and labour but while the causes of Tiddler's health problems and shaky start remain unknown and probably genetic it was and is still hard for me to believe this mantra.

At the start of visiting hours the next morning my Husband arrived and shortly after there was a delivery of flowers and balloons. This was wonderful and hugely symbolic for me as the first time round there was no period of newborn bliss and celebration. There were no visitors. There were few cards and there certainly weren't any flowers. We just didn't know whether Tiddler was going to make it and so people were unsure how to react.

This time, we could do the normal newborn things and allow ourselves the euphoria that things were ok and we had brought a beautiful little life into the world.

During day 1, baby had a more comprehensive paediatric check and again was given the all clear,as far as one ever can of course.

In the meantime, I cannot deny that I was very jittery. Panicking about her new and strange breathing noises, being terrified about her bubbling at the mouth, staring and staring at her chest to ensure she was breathing. I just couldn't "stand down" to sleep, it felt like I was on alert the whole time.

After 2 nights in hospital we got discharged. This time I was twitchy but not terrified as we had been the first time round. We walked out normally. We had the balloons, the flowers, my baby was healthy and I was blissfully happy. This is what it is supposed to be like. Because it wasn't like this the first time round I am so grateful for how things have turned out this time and we both truly appreciate how blessed we are.

So here it is. My birth story. The happy ending. Or so we hope. My husband has just remarked how ironic it is that this mega blog post has actually taken me longer to write than it actually took to give birth! Probably says more about my writing than the birth...

Tuesday, 15 May 2012

Developmental Paediatrician

Today Tiddler had an appointment with the Developmental Paediatrician. I went on my own with T, unsure of what it would entail but reckoning on a 15mins with possible immediate discharge.

2 hours, several Braxton Hicks and a few more grey hairs later, we emerged from the appointment with T beyond tired and me fighting back the tears.

Ironically, the appointment went quite was very detailed, with the Paediatrician taking a lot of history and then observing her accomplish various tasks: drawing, identifying objects, building block towers etc etc

She more or less hits the spots that she should, finding herself in the 15-18mth bracket for most aspects apart from communication which she was a bit more advanced, and cognitive and personal care or something like that which she is more like 12 mth level. It was a very interesting process to observe, she casted objects like a trooper, totally refused to build a brick tower.. It was reassuringly typical behaviour...

They did express concern as to her attention span... Which is woeful and incredibly incredibly exhausting so I was glad that this was picked up on as I felt validated. I have been trying to tell people how difficult it is to manage her as she will not stay on a task for more than 2 minutes, if you are lucky!

Her head banging and casting behaviour was also picked up on again and the basic upshot is she is getting referred to our Local Authority Educational Psuchologist to be assigned a pre school teacher. I have been trying to get T into this system and had been told before that because she was without a diagnosis this was unlikely. Thankfully, now she has been seen by the Paediatrician they have a Statutory duty to notify the local authority.

So a positive appointment all in all but there is no way I am flying solo with appointments like that again. It's impossible to manage bump, bags and very wriggly non walking toddler without a pushchair... Again... Not allowed in the building... We have heard that somewhere before...