Wednesday, 24 June 2015

How not to flick people in the face when your child has a feeding issue

Toddlers are fussy little monkeys when it comes to food - that is a well known fact. Apparently it's an evolution thing - an instinctive defence against eating potentially unsafe or dangerous foods or some other blah blah that means nothing when you are in the pits of dinner time doom.

I had it with my older two. The endless cajoling to get them to ingest something other than chips. The patience dredged up from the pit of the stomach as we sat down for an actual real-life home cooked meal that they refused to eat (but it's beef goulash. Really yum!) The pretend stomach ache as dinner is placed on the table that magically disappears with the mention of the word biscuit.

How can they go from a baby that will scoff anything to a demon three-year old that will only eat a mouthful of spaghetti hoops after skipping a lap around the table, or a spoon of peas if you sing Fishy on a Little Dishy in your high helium-type voice?

How?

How do you become the parent that pretends not to notice that they have hidden two potatoes and a carrot in your cardigan pocket hanging off the back of the chair, or the one that thinks screw it a mini waffle and a crumb of fish finger will have to do today.

How?

Because man alive, you just do what you need to do to get through the day.
We all go through it at some point. Don't be worrying. Honestly - it will either pass or you'll discover you have better techniques of negotiating and bribery and they have better reasoning and a growing desire to be allowed on the iPad this century.

There will be days though when it will all be too much and you'll wish it was just you and your Super Noodles made in the kettle at university halls again.



You'll learn ways around it and you'll want to pass this knowledge on. Of course you will. After banging your head against the wall, you'll know sharing your experimental findings and hard-earned experience will be for the greater good of mankind.

You come from a good place, which makes it hard to write this:

There are feeding issues and then there are feeding issues.

And if you know someone who has a kid with those feeding issues, it might be wiser and kinder if you leave your recommendations at the gate. Otherwise you risk a flick in the face (literally or otherwise).

So on behalf of the parents of children with feeding issues caused (or hindered) by anatomical, metabolic, gastrointestinal, motor or sensory problems here is some of the advice that makes us want to tear our hair out (but we do still love you).

They'll eat when they are hungry

Actually they won't. There is a small proportion of children who just will not eat no matter how hungry they are. Because it hurts - mentally or physically. Eating is associated with pain and as such hunger is a negative feeling that can become suppressed over time. This can be especially the case for children with a developmental disability or with autistic spectrum disorder.

All kids do this - fussy beggars!

Yes lots do. But there is a difference between picky eaters and problem eaters. According to the SOS Approach to Eating, picky eaters eat less than 30 foods or more, but they are able to tolerate new foods on their plate and can usually touch or taste a new food. Whereas problem eaters are a whole different kettle of fish. They will usually eat less than 20 different foods, will cry and "fall apart" when presented with new foods and will refuse entire categories of food textures.

Eating is instinctive - it will be fine

Apparently not. It is only instinctive for the first month of life. Eating is essentially a learned motor behaviour after six months of age.

Eating is easy - he'll do it eventually

Gabe has had a number of tests to see what is causing his food aversion. He is dairy and gluten free and is on reflux medication, yet still has random bouts of pain. The next step is an endoscopy to test for allergic oesophagitis. We recently had a discussion with Gabe's doctor who said that if the results come back clear then we are looking at a psychological rather a clinical issue in regard to food. Okay, we said, that would be good. We can sort that. His sympathy face told a different story. Apparently for a child that has lost the instinctive stage mentioned above, learning to eating can be as difficult as learning Russian. You see you use every muscle and organ system to eat. It also requires simultaneous coordination of all eight of our sensory systems. I've got him enrolled on the Russian course instead to keep life simple.
My favourite dish. 

Have you tried giving him less milk?

No. Because sometimes he'll drink, but will not eat. Other times he'll eat, but refuse to drink. It depends on what he was doing when the pain in his oesophagus became too much to bear. If you ate salmon and it made you ill, chances are you'll not want to touch that for a while (or WKD drinks in my case. Yack). His special milk is the only thing keeping him alive at times and it would be ludicrous, barbaric and stupid to stop it.

If you are less stressed, he'll be less stressed!

I am a stress head. I have been known to lose my sh*t about all manner of minor things - from sock pair hunting to someone overtaking me on the road (how dare they?) But not when it comes to feeding Gabriel. Then I am an oasis of zen and calm. Because if he so much as sniffs the idea that all is not well in the woods he will shut that feeding operation down. SHUT IT DOWN. We tag team a lot when one of us is getting hot and bothered by the head throwing or the hand batting. But always the person in front of the chair is smiling and encouraging no matter what.

Perhaps you are making feeding into too much of a performance?

This is the one we get from the professionals a lot when we tell them the lengths we have go to sometimes to make him want to eat. Singing, lighting candles as he likes watching them flicker, having that particular Peppa Pig book in front of him, watching 234 episodes of In the Night Garden on loop, no loud sudden noises - you name it, we try it. Because if limbo dancing with a David Cameron mask on reciting Shakespeare will make him take an extra mouthful - then I'm all in.

Feeding therapy going well
Feeding therapy will sort it - get speech and language therapy involved

Erm yes in an ideal world. Gabe has had feeding therapy since he was 9 months old and our therapist is lovely. Yet we don't seem to have made that much progress. Put some hair bobbles around the bottle and he might just hold it, they said. Nah he just refused to drink. Let him mess with his food. Sure - three years later we have a lovely stained home but not one fleck of it went near his mouth. Finish after 20 minutes. What? If he is keeping going, we are keeping going. Massage upwards from his arms to his face on a daily basis to reduce the aversion. We gave up when the neighbours all put the For Sale signs up - something about some screaming or something. Lots of this does work for other children though and that is one of the reasons why (as well as them assessing swallowing ability and aspiration risk) therapists rock.


Why persevere? Why not get a feeding tube?

This is the million dollar question. I know lots of children with feeding tubes (hell we had one for six months) and each parent will testify that once they made that decision it was the best thing that they did. It took all the stress out of the situation - especially those who have to issue a lot of medication. It is surprising how easy you adapt. I could set up a feeding machine in my sleep (I often did) and the alarm becomes like a family pet - annoying but important all the same. Yet sometimes the decision to tube feed is not black or white. We run the risk of his psychological food aversions running amok and we may never establish consistent, sustained oral feeding. So for now we keep going.

This too shall pass

Do you know what it might not. And we are prepared for that. We'll crack on because really what choice do we have. Meanwhile, sitting feeding for hours is a good excuse to catch up on our box sets. Every cloud and all that.


Despite all this, I know that it could be so much worse and I take my hat off to a lot of my friends dealing with much worse gastro issues than us and handling it all with much admired aplomb.

So you see, my friend, I hope this has given you some food for thought (get it) and I hope you know I won't really flick you in the face (that hard ha). Let's meet up soon and get some coffee and cake. Although cake does strange things to my body - like make it bigger. Any feeding advice for me would be much appreciated.

Lots of love.


Thanks for the inspiration from the marv Stolen Sleep and her epic post How not to punch people when you have a baby that does not sleep

Monday, 15 June 2015

My Dad - growing up with a rebel

It was one of those lovely post-roast moments on a cold Sunday. The remnants of the previous evening's drunken shenanigans with friends had finally abated and the hangover hunger was sated by my mum's Yorkshire puddings.

Settling on the sofa as an old film buzzed in the background, the idea of getting packed up and heading to the train station for the three-hour journey back to London from Liverpool was galling.

"I better start making tracks", I announced to my audience of Mum, Dad and younger brother.
"Why don't you stay for another night?" Dad piped up from under his paper. It was very cosy with the fire blazing whereas outside the wind was roaring.
"I wish, but I have work in the morning."

Dad put the paper down and with stark sternness and authority stated simply:
F**k work.

This is one of the things I loved about my Dad. He truly meant it.
F**k work.

Nothing could have been more tempting. I was 24 and had recently been promoted to Features Editor at my weekly finance magazine. A role, to be fair, which was too large for me at that stage. The previous week my first supplement had to be pulped as someone forgot to link the images. What should have been an austere shot of the CEO of a European Conglomerate was actually a hilarious picture of his huge big eye.

How I was not sacked, God only knows. And the "I spy with my great big eye" jokes that followed were getting boring.
F**k work.
If only.

In my Dad's head it was that simple. I was stressed out, I was not enjoying it. It was therefore time to walk away. Start again.

I didn't obviously. But looking back he was right. I should have.

Growing up with a man that refused to conform to the norm has probably made me more straight-laced and cautious in regard to my work life.

He always worked for himself and spent a long spell in Johannesburg in his early twenties on a building gig slap bang in the middle of the thorny 1960s. He had a Del Boy "next year we will be millionaires" approach to life. It was a feast or famine existence. One minute would see holidays in Florida, the next he would have just enough to pay the bills.

The "experts" say that you should argue in front of your children as long as you let them see you making up and resolving the dispute. In the same way, witnessing Dad's latest business endeavour crash and burn, but then watching him dust himself off and run full pelt at the next opportunity has been subconsciously ingrained in me in a good way.

Many times over the years when things have felt too chaotic or when it seemed impossible to juggle a job and three small children (one of whom is disabled), my husband would ask simply: "what would your Dad say about this?"
What would my Dad say? He would say: "F**k work."
Each and every time it would give me much needed perspective on the situation.

Although quite strict, it wasn't always a conventional upbringing.

My earliest memory was travelling around in his work van and five children squashed on an old leather settee in the back (seat belt rules obviously were not invented). This sofa was like a extra member of the family and even got dragged out a few times as a seating option when we went for picnics in country parks. Not for us rubbish old picnic blankets or sitting on your coat.

Mini groups of 11 year olds wanted to come to our house, fascinated by the liberal approach to swearing that we didn't notice. Everyone was welcome. Always. Mine was the house that we all came back to after our first summer of clubbing and we sprawled away our Sundays watching The Breakfast Club and Pretty in Pink.

Weekends were full of noise (so much so that my oldest sister invested early in ear plugs) and they seemed to have a wicked social life. Everything was celebrated. Everything. No matter how small.

My 21st birthday party was one of those groundhog days that I wanted to be stuck in forever. He sent his mate up to Leeds with a mini bus to bring back all my university mates and let them sleep all over the living room floor. Even made each and every one of them a sausage butty before he had them all transported back.

It was never dull. From the year we bunked into Butlins through the bushes (sorry Butlins) to the time we lived on a building site in three caravans (one solely for laundry) as he built his dream house from scratch. As a self conscious 15 year old, I obviously totally loved that Clampett-mode of living.

There were the football highs as he followed Liverpool Football Club around Europe and the heart breaking lows of the Heysel and Hillsbrough tragedies (each time we sat for long hours by the phone waiting for news of his safety; for the former it took more than 24 hours).

He was a popular man my Dad, but he was not perfect. One of his dearest friends once said: 
 "he would give you a thousand pounds, but fight you for a penny."

This statement has always stayed with me. He felt it was important to be generous - with your time, your money and your actions. But take the mick and he'd fight you over that penny for the sheer principal of the matter.

He lived his life without a plan. Things were done on the spur of the moment. An element of leaving things to the hands of fate and letting the Gods have their say.

Perhaps not a bad way to live. Less sweating of the small stuff.

There was a serious side and after a few shandies, he liked nothing more than a natter about life.
I kick myself for all the times I rolled my eyes and sought an escape.
How much would I now give for one of his philosophical put-the-world-to-rights late night conversations.

You see he died 13 years ago after telling a group of teenagers off for throwing stones at a house. A spur of the moment decision that cost him his life.

And since that day everything I've done no matter how thrilling or exciting, has lost a little of its sparkle. There is no one I want to impress as much as I wanted to impress him.

I am not a rebel.
I probably won't give you a thousand pounds.
And I'm equally unlikely to fight you for a penny.
As far as I know I am not bunking into Butlins any time soon.
But now, when the moment warrants it, I do announce quite loudly: 
F**k work

The principle works across all manner of things and never fails to make me smile.
It reminds me to stop being all things to all men.
To get a grip.
That most of the stuff I worry about, matters not a jot.

Perhaps more than once this approach has saved me from the madness that has been the past four years with Gabe.

So you see growing up with a rebel for a father was an education in itself.
And learning how to dust myself off and get back up after a set back was the greatest gift we could have given me.





Monday, 8 June 2015

And now for the cringey bit (updated)...

My lovely little brother is running in the Liverpool Rock and Roll Marathon on Sunday to raise money for Gabriel. It is hard to find the words to thank people when they do something amazing like this to make our little boy's quality of life a bit brighter. So many have done so much to help raise money for him in the past 18 months. They will forever hold a special place in our hearts.


I thought I would reshare and update the post that I wrote in 2013 when we first started fund raising for Gabriel explaining why we've had to ask for help from our community.


**************************************************************************************

I guess it comes to us all.

Well by all, I mean us families of these remarkable little children that decide they just have to have the latest designer genes and do things completely different than other children.

Hide and cringe
I don't want to follow the crowd, they say.
Breaking the mould is the way ahead, they insist.
Who wants to be a sheep, they smile.
It is my way or the highway, they state.

Gabe, it seems, has decided that the lifestyle he wants is one that is more suited to the son of shipping magnate.

I'd tell him to get back to his roots, remember his hardworking fore-fathers and to reign in the expensive tastes except it is not a back stage pass to latest concerts, a limited edition pair of trainers or even a gap year in Monaco that he is after.

Thursday, 28 May 2015

Special needs mums are miserable moaners with greasy hair

Are you a mum of someone special?
Are you outraged by the title of this post?

Did you click through thinking: "Hey lady watch it.  I don't have greasy hair. Au contraire. My hair is gorgeous. Thank you very much."

Or are you someone that clicked through thinking: "Hell yes. The moaning. For the love of all that is holy. The moaning out of these people." 

Or are you just eating your toast and thought I'll have a wee read because Netflix hasn't loaded yet?

Whatever.

Obviously, I don't think that parents of children with special needs are miserable moaners with greasy hair. Well not always (but if you could see the actual state of me now you might concede the post title has a point).

I do wonder though if occasionally this is the overriding impression of us. You know by *whispers behind hand* non-special needs type folk.

Are we deemed a bit hard work to be around because our children are harder work?

I am guessing all of us have moments when we have been sharing really interesting information about SEN reform, social worker assessment reports or a new drug with our nearest and dearest and we have watched their eyes glaze over.

At times I do wonder if anyone is thinking: "Oh please just shut up about your kid."

Perhaps I am doing a huge disservice to my family and friends who are nothing but supportive and kind about my son, who is globally delayed and medically complex. But if sometimes I find the whole situation we have been thrust into tedious beyond tears - what about them?

I think now and again we are in danger of over egging our puddings. Moaning our way through the mayhem. Maybe putting too much emphasis on the "special" in special needs.

As for the greasy hair. I mean that in the metaphorical sense. In the way that, because of our offspring, we are sometimes viewed to be a bit downtrodden, frumpy, burdened, the underdog, the one (gasp) who is not much fun to be around.



In fact do you think that sometimes we annoy the hell out of people?
Here are just a few examples.

We make people tongue-tied
I remember when my friend's dad died and for weeks after I found I had some crazy form of death Tourette's. I'd say all manner of stupid things.
I nearly died when I heard the news.
How are you doing? You look like death.
It's dead sad.
It is killing me that I don't know what to do to help.

I was winning at being a mate. A few years later when my own father passed away I found myself giggling when people did the same. Sometimes people don't know what to say and it comes out wrong. No matter how well-intentioned.

I find this happens a lot with special needs terminology. A friend was saying she looked like an imbecile in a photograph and then looked guiltily at me. It just means fool - I am good with that. I have to check my own choice of words a lot of the time - half of this stuff we grew up with. Granted, there are some horrible words out there that make me want to weep now, but there are loads of benign phrases too. Most of us special needs parents don't get too hung up on this stuff. You doofus.

We often kill the joke
I have a bit of a dark sense of humour and can often see the funny side of this life we lead. Whether that is sharing a giggle with the husband over an explosive nappy or joking about getting a good parking spot with the Blue Badge. Sometimes this gallows humour does not translate so well.
Flicking through pics of Gabe recently with my mum I stopped at one and quipped: "does he look disabled in this picture?" My Mum was horrified. "No, no. Why would you even say that?"
"Erm... because he is disabled and he's strapped into a standing frame and playing with a switch toy." 

It was a joke. A bad one granted. It wasn't even original as I'd stolen it off one of my special needs mum mates. People don't think it is okay to laugh at our kids. But all kids are funny sometimes. Even ones like ours.



Another time a group of us were laughing at a fellow school mum's shoes (she started it). Taking the mick and being mock mean to each other.
"I've got new frumpy mum shoes. What do you think?"
"The boating club called and asked for their canoes back" my mate said. Heehee.
"Did you steal them off your nan?" One of us said. Hoho.
"It takes real skill to be this stylish at the school gate," I'd added thinking I'd like a pair myself.
"They look like special shoes." another said grinning.
"Arrhh that's well slack. My boy wears them." I threw back giggling.

I had been jesting but the laughter stopped and the topic was swiftly changed. Even putting on Gabriel's tiny built up boots and doing a funny dance with bonce boppers on my head wouldn't have got the joke back on track.
Talk about sucking the fun out of a situation hey.

Our lives are quite annoying (and frustrating)
I don't really want to know every sentence of a document my friend is putting together for work or a run down of each brick placement of her house renovation project. But I am definitely interested in knowing if she is doing well and is on track for a promotion. Or whether the building work is going so badly that it is totally stressing her out and she's not sleeping. I guess that would be the same for our lives. We don't need to drown people in detail (no matter how tempted we are). Of course our friends will be bothered if something is getting us down or equally we are dancing on air because our non-verbal child muttered a sort of word.

But everyone has miniature and frustrations.
We need to remember that sometimes.

We can't just expect to be able to emotionally spew on all and sundry when ever we like. It doesn't work like that. Otherwise we run the risk of becoming the person people want to avoid on a cold Monday morning when they are feeling fed up. We become that heart sink woman they have to sit next to at the Christmas dinner who is going to rant on about the injustice of the election results (cough).

Imagine that. They might then forget how much fun we actually are. How we are the best dancers and singers. How we have loads of juicy gossip about Hollywood actors. And that we are pretty stupendous for reasons other than raising a child with additional needs.
Me being a miserable moaner.

Things don't always go to plan
I am always late. This is not always Gabriel's fault. I was late for stuff before he turned our lives upside down. I am just not mad on rush. It stresses me out. And I then get hot narks (narks that make me hot). I am also rubbish at returning calls and texts. More often than not for the simple reason that I am a lazy cow. So you see my bad bits were always there and he just exacerbates them. I have no doubt that this annoys the crap out of my mates. There was a meme going around Facebook that said "I replied to your text in my head". I thought I'd try it on one of my friends. She didn't buy it and looked at me like she wanted to punch me in my forgetful head.

We see your misery and raise it
You are having a bad day (a really feffing bad day) and all you want to do is moan about it. You know some of your gripes are pretty irrational, but all together they have become A REAL BIG DEAL. You need to vent. I am with you sister. Let's work it out. Go...

Friend: OMG my child will only eat cheese sandwiches. And fish fingers.  Nothing else. Bit of chicken and peas. It is crazy. Sweets obviously. And crisps. It is starting to stress me out. What can I do?
Me: Jeez. Tell me about it - Gabe is just doing the baby mush. Thinking about tube feeding now actually. Then we have that test soon to see if he is like kinda allergic to all food in general. What a drag.

Friend: I am so worried about little Jimmy. He doesn't run as fast as other kids. Not sure if it's because he doesn't like running or there is something wrong. I'd love him to be more sporty.
Me: I know. I had a dream last night that Gabe could walk. It was epic. He was walking all around the park. But then I woke up and he was still in his wheelchair. Bummer.

Friend: Lilly-Jo just won't do anything for herself - what is she going to be like when she is older and at university. She'll burn an egg and wear the same clothes for a month.
Me: Haha. I was thinking the same about Gabe. About how we'll still be taking him to see Santa when he is 24 and living in his group home. Hahaha.

Hahaha.
Haha
Ha.

So special needs mums then?

Annoying? Probably (aren't we all).
Miserable moaners? Sometimes.
Greasy hair (metaphoric or not)? Perhaps too often in my case.
Same people we always were? Mostly.
Still like a good laugh: Hell yes.
Good at jokes?   ... erm... working on it.

Wednesday, 27 May 2015

Down time: doing it now and doing it well

In the past few weeks I've started to get a bit anxious. Those small but alarming moments when your heart beats that bit faster than it should. Where you are wound up so tight that the most innocent of misdemeanours can make you snap and snarl at your loved ones.

It doesn't happen often. But I hate it when life seems to pelting at a gale force pace and I feel like I am running after it shouting "hey wait I haven't even zipped up my boots".

Nothing serious, thankfully, had happened but sometimes I think I am built for a much simpler lifestyle.

All three children and the husband had back to back bugs and viruses, we started our kitchen extension, work was manic and more time-consuming than normal and Gabe was waking for hours in the night. We had the usual after-school clubs, homework, episodes of House of Cards to watch and kids that needed to be fed and watered in some way (the cheek!).

It is even more frustrating when life is busy and stressy because there is no time to exercise and food grabbed on the go is never of the premium nutritional sort (try beef Hula Hoops and a KitKat for a power lunch)

I couldn't keep up and my glass was becoming half empty.

You have some days off soon, my good cop said.
But then they will be over, my miserable arse bad cop said.

You are going away with your mates with no kids woohoo, good cop squealed.
Yeah well I can't stop eating so I'll look like a whale, bad cop moaned.

But Gabe is waking to play of a night, like a normal toddler, that is mega great, good cop tried.
Who gives a sh*t, bad cop snapped.

Not good.

But then yesterday I met my horrid deadline for work and with the hubby out, I tricked the children into a much earlier bedtime. Then I did four things that made me feel like a new woman:
  • I had a hot bath and stared at the ceiling for ten minutes
  • I lay on the bed for half an hour in my dressing gown and flicked through Instagram for 20 minutes
  • I put on cosy PJs and bed socks (the bliss) and sat on the sofa and watched mindless TV for two hours with a brew and some chocolate (Grey's Anatomy and Made in Chelsea I salute you!)
  • I went to bed early and read a chapter of my dusty book.
Sometimes, we forget the joy of doing absolutely nothing.
Mostly, we forget how essential this is to our emotional well being.

It is like we feel we are letting the team down if we don't spend the precious few hours we have of an evening doing more stuff whether it be ironing, making packed lunch or even sorting out more washing.

Stop. Now. 

Leave the cleaning, shut down the computer go and lie still somewhere and clear your head.
You'll feel better for it. I promise.






Tuesday, 12 May 2015

How many ways to say I love you?

Dear Mummy,

You know I love you to the moon and back. Let me prove how much:
  • I promise to wake up early everyday (even before the birds) so we can have longer days together.
  • Rather then shout at you and risk waking up the man existing next to you (aka daddy) I will wriggle around and put my bum in your face instead (soz if it's a bit smelly).
  • Or if you prefer I can wake you gently by sticking my fingers in your mouth. They will be nice and warm from being inside my nappy.
  • I have decided that I do not need to go to nursery anymore and you can give up your job. We can then spend hours at the park and you can push me on the swing until your arms fall off.

Monday, 11 May 2015

To the mummy in the bubble

Hello there

How are you? I want to tell you that you are doing an amazing job in raising your children.

I know that they are the centre of your world and every decision you make in life has them at the core.

I know that you work tirelessly to ensure they will get the best breaks - access to the best education, the right set of friends and social influences. I know that you want them to do well in life, to be the best that they can. I know that you will do anything in your power to ensure this.