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Chronic illness: the parts we don't talk about


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Yay for carrots!

I’m disproportionately excited about carrots.
Why? Because this is the 3rd vegetable that F will eat. It’s taken us 7 & a half years to get here but Yay! (As I write this I had a flash back to 6 years ago and a dietician suggesting I try carrots for F as part of the “she won’t eat anything what should we do” plan.
Well, salt fiend that she is, finally she likes that they are sweet.

So what veggies have we got in the bag?
Green beans
well, mostly the beans inside the pod (she picks them out herself)

Sweetcorn

ah, corn on the cob with lots of salt and butter

Carrots

roasted, of course. The best way to cook carrots.

Coming up next! Butternut Squash

actually she likes this already. She thought the roasted orange delights she liked were carrots. And like the fiend I am, I went along with it. Then one day she caught me out and I thought “oh pants”.

She suprised me. She wanted carrots  so I roasted some. She ate them.

so now no matter what I’m cooking for dinner, if she wants carrots, I put on the oven and roast carrots.

whatever it takes. I want her to eat so badly, I’ll do anything.

well, except when she asks me at 7pm. Then I make her wait until the next day. By the time they would be ready it would be bed time.

Oh, and if we don’t have any carrots in the house, then she’ll have to wait until the next shopping day.

Ok, I won’t do anything so that she will eat. But I do try very hard to have the things she likes to eat in the house. But if we are out, we’re out. Maybe she will try something else.

 

Note: I hate wasting anything so I just have to say: I use the small oven. I wouldn’t turn on the big oven just because she wanted carrots. 

Oh and she eats tomato soup and ketchup (Heinz I love you). But not together, eww.

 

 

 


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I love you, but I don’t always like you

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Parenting is supposed to provide unconditional love: you for your children and from your children to you. And it does.

That’s a parenting truth.

Here’s another parenting truth: your kids won’t like you all the time.

They go through stages where they prefer daddy over mummy, and sometimes, mummy over daddy.

Then they hit puberty and don’t like either of you.

I can see you nodding, Can I get an Amen?

What people don’t talk about is how sometimes you, wonderful parent that you are, don’t like your kids.

So I’ll fess up here and tell you my truth:

Sometimes I don’t like my kids

In fact this last week I have seriously disliked my kids.

  1. Is it because they don’t listen at bedtime and are messing about the whole time?
  2. Is it because they are testing the limits on food requests? Taking advantage of their eating issues to just pick their favourite food?
  3. Is it because I haven’t had enough me time to recharge my batteries?

Yes. Yes to all of them. But mostly it’s No.2

F does have quite major issues with food and it’s still really hard to have food available for her that she will actually eat. I’ve written about it many times and our patience and encouragement is working and she is eating more and more. Did I mention that she ate roasted butternut squash? Voluntarily. And she keeps asking for it. Isn’t that fantastic?

Yes!

Except for when it isn’t. Except for when she can’t face it anymore.

You see, with her condition, her electrolytes can go all over the place, she ends up feeling nauseous and then it becomes hard for her to eat. Her appetite disappears. Food smells and tastes funny to her.

So you never know when she is going to stop eating. Because of her condition.

And then she’s a kid. All kids do their utmost to create the most perfect life for themselves (go kids!).

  • They want to wear their favourite clothes all the time.
  • They only want to eat their favourite food.
  • They want to watch their favourite tv programs.

So, is the sudden difficulty with eating a result of her condition or has she decided she doesn’t fancy it anymore?

Well, I don’t know either. But my gut tells me that she has been playing me lately. Playing me. And I don’t like it.

I got frustrated. It showed. So I told her my suspicion. I asked her outright:

Are you only eating things that you absolutely love and fancy eating?

Yes, she replied.

Mo’fo’!

I’m going nuts trying to feed her. And S? She doesn’t have these issues but she’s a smart girl. She sees the pattern and copies it, uses it to her advantage.

So we had a talk about it. We have called a truce.

But here’s another truth:

The dislike is temporary. The love is permanent.

p.s. her growth has stagnated and her neph says she needs to gain weight. Hmm, I wonder how much this has got to do with my tension? Probably more than it should.

 

This story was also published on Youshare so follow the link and like it there please.


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“I want to be normal”

For so long, F has consumed very little food by eating. Apart from the nausea, the extremely sensitive gag reflex and the throat spasm affecting her ability swallow, there has been another factor: her teeny tiny bites.

No matter how small a piece of food you give her, she will always find a way to pick a bit off and eat that. Crumbs. Her bites have been crumb size.

With increasing regularity she has been taking bigger bites, always showing us “look at the size of this!” and then putting it in her mouth.

In the last couple of months she has actually been putting enough food in her mouth in one go to fill her mouth; enough to puff out her cheeks even. It takes effort. Sometimes you can see that she is gagging and with the incredible control that she has, she stops herself from vomiting. She is proud of herself for setting a challenge and then making it. We cheer her on.

I never thought much about it (I only drive myself crazy trying to figure out how I can make her eat).

It’s part of her journey of learning to eat. It’s the hard way because it is conscious. She actually thinks about how to move food around her mouth, how to move it to the back so she can swallow. Next time you take a bite, pay attention. Do you even know how you use your mouth to eat? Well, unless you are a speech therapist, you probably don’t know. None of us do. We learn to eat before the age of two and we are not aware of what’s going on. Food goes in, we chew, we swallow. End of story.

For late eaters like F, who started eating much later than that, it’s a conscious process. They are aware about what’s going on when food goes in the mouth. Quite frankly, it’s quite a gross process.

So as parents, we encourage eating (I wrote about how we do that here and here) and allow her to set her own pace. If she wants to take teeny tiny bites, then ok. It will just take longer.

Then something happened and my heart paused, then beat again. Tears burned at the back of my eyes.

Just recently she told J why she does this. And this is what she said:

“I want to be able to eat like you guys do, you know, normally”.

 

We forget how much children are aware of. They don’t talk about how they feel different but they do feel it. They don’t say that they feel excluded, left out from something that everyone else can do (like eating). But they do feel it.

We should not take silence as “everything is ok”. If we listen carefully we can find out so much of what is going on in their lives.


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How can pink donuts be my downfall?

I have written a lot about how I have dealt with never ending sickness extreme eating problems (i.e. nil by mouth for 5 years).

I think I have written about it with patience, become a little bit wiser through the process.

Well, today I do not feel even remotely wise or patient. Today sucks.

You see, little sisters copy big sisters. In everything. All those quirky eating/non eating habits that I was able to deal with in F, who has the illness and the multitude of reasons why she does that weird stuff, well, they just suck when S does them.

Take donuts. Until recently, F didn’t eat any kind of bread or bread stuff. Yet she was interested in the little sprinkles on pink sprinked donuts.  So what did she do? Pick off the sprinkles.

S loves bread. I mean really loves it (except crusts but hey, she’s a kid). How does she eat donuts? She picks of the sprinkles (and icing because she’s a sugar junky).

Now I don’t want to force either of my kids to eat junky donuts, I really don’t. But I want to shout “just eat the effing donut!”  Sometimes I feel trapped in this circle of weirdness with food and only one of them has the illness!

Can’t catch a break. You’d think it would be easier with the “healthy one”.

Sigh.image

Ok, whingeing session over.

 


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How to stop shouting at your kids: 1 simple rule

I have read many articles on this topic but have found one thing that you need to have in place for those tips to work. I discovered it after getting advise from a child psychologist.

About a year ago we asked a child psychologist for help. F had started to have tantrums. Major episodes of anger and sadness and we just couldn’t get through to her at all while it was going on.

Given the traumas in her past and the strict medicine routine that she is on, it was not surprising.

The psychologist talked to us and to her and gave us some things to try (we had already been doing some and had some new ideas).

Then she said this:

“next time she has a tantrum, record it so that I can see what she is doing.  And I can hear what you say and maybe give you some tips on how to respond”.

This was it. The moment of inspiration.

Yes, I hate my voice being recorded and really did not want to see what I looked like on film but it was something else. The thought of being observed, especially by a psychologist, that made me pause.

You see, it’s hard to keep calm, be patient, be neutral even, when you have a kid suddenly dive full on into a tantrum. They can have been annoying the hell out of you all day long and then launch into a fit and yet I’m supposed to stay calm, rational. I’m supposed to but I don’t always succeed.

So that pause told me something: that I was pretty sure that I was not helping the situation. I probably added fuel to the fire.

So I went home and thought about it. What if, in my interactions with my kids, I behaved as if someone was watching me?

Ever noticed, when you are at your mum’s or in-laws house and your kids start acting up, how much patience you have? Or when you are at the park? Oh, definitely now: when other mums are around?

I started noticing.

My tone of voice, my level of calm, my ability to bite my tongue and not join in the snarky-ness. These were all different when other people were around and when in the back of my mind I thought “if she kicks off, I’m going to be filmed as well as her”.

She never had such a big tantrum again. Yes she played up. Yes she got really angry. Yes she got really sad and cried and shouted.

But I did not.

So this is my conclusion:

There is no one more patient than a parent who is being watched. And a watched parent never shouts.

A Watched Parent Never Shouts

 


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8 ways to get your kids to eat: No. 8 in action

Ok, so after my impression of Homer Simpson’s “angry dad” last week I was able to chill out and get back to the positive psychology approach to getting kids to eat.

This week I practiced No. 8 Agreeing together what the rules are going to be.  The heart of this is control.  We gave her space and on Monday she asked if we could barbecue. It’s winter in Amsterdam and it was about 10C so of course we said yes.  Hubs bought some meat (ok, this is not in line with “rule 1” but we didn’t have meat for a BBQ in the house.  It’s winter!).  The kids went outside with Hubs to make a fire and cook. We ate inside.

This is what she ate:

Butterfly lamb chop

butterfly-chops-redcurrant-glaze

Chicken drumstick (she got through half a drumstick)

drumsticks

Green beans

green_beans

Sauces: piri piri, mayo and ketchup. Lots of it. (no photos, I’m not advertising here).

So how is it that last week eating was a problem and on Monday F had a feast?

Was she just being fussy? No.

Bartters is a rare illness and there is limited understanding of what it is actually like to live with it. Over the years I have talked to adults with it or with Gitlemans and I have come to understand a few things.

Your electrolytes go out of whack at any given moment: your potassium levels can drop when you get stressed, when you are active, when you play a lot, when you get hot … basically, when you do anything, your levels can drop. When this happens, you are dehydrated. You feel nauseous and don’t want to eat.

Everything you do uses potassium. It makes your muscles work. When you don’t have enough, your muscles don’t work as well.  So sometimes even swallowing is difficult for F. There was a long time (more than 12 months) where she could chew the food but couldn’t swallow it. So you might want to eat but you can’t.

All those meds you take make you feel like crap, so you don’t want to eat.

Everyday there can be a number of reasons why you don’t want to eat or can’t.  That’s why after all these years we still rely on medical nutrition (feeding tube people have you tried Peptisorb by Nutricia?  It’s great.  Here I will advertise.  This dramatically improved quality of life for F and for us).

So Monday was a beautiful day. Her enjoyment of the juicy lamb was clear (it’s been months since she ate red meat) and she chatted all the way through about how delicious everything was.

You can’t imagine my joy at hearing her groan “ohh I’m full”.

I’m just going to savour this memory and stop right here.


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8 ways to get your kid to eat & 1 thing not to do

My daughter has an eating problem: she doesn’t.

The cause is related to her illness and it is reinforced by physical and psychological side effects of this chronic illness.

Not just a fussy eater but literally for years F hasn’t been able to consume more than about 20 kcal a day through eating or drinking, with sometimes months going by without food passing her lips.

This is changing, firstly with Haptotherapy and and now we have a program to encourage her eating which is based on creating opportunities and rewarding her with recognition when she eats.  We do nothing when she doesn’t eat, except to say “ok, maybe next time”.

However, this last week I’ve been getting pissed off. Really pissed off. I make things I know she likes and she says “no”. I ask what she wants and she replies “I don’t know”.  Sounds like a lot of kids, I know, but I lost it.

I got annoyed and told her I had had enough. We had words. We sat apart, brooding.

She saw my tears and she hugged me. Yes it should have been me that moved first but sometimes our children are just better people than we are.

There’s a fine line between giving space to let them feel free and encouraged to eat and being totally I ineffective letting them just mess about.  Sometimes I get lost and don’t know where I am in relation to that line. That’s what this last week was about. 

When I’m on the right side of the line, it’s great. Positive psychology to encourage her to eat really does work; her range has expanded greatly and quicker than we ever expected (hey, in our world, getting her to put a whole teaspoon of food in her mouth in one go after 6 years is speedy gonzales fast).  And it’s without arguments over food (well apart from the one I mentioned earlier but that was my fault).  There is no power struggle.  Repeat, no power struggle.

This is what it looks like:

1.  We are open to her needs without being slaves to them.  For example, we try to have stuff she actually eats in the house.  If we have run out we put it on the list for the next time we go shopping.  Running out is not the end of the world for either of us.

2.  Get her involved in cooking.  She loves to chop stuff and sometimes she just uses her hands (mushrooms are super easy at any age).  I try to keep something for her to cut and if I can’t do that, then she can put what I have cut up in a bowl before we transfer it to the pan.  It is not really necessary but it gives her something to do (and I look like one of those TV chefs from the 80’s who has stuff ready in little dishes.  The irony or my scornful question “who cooks like that?”)

3.  Let her play with food.  There is a reason babies and toddlers shove their hands in their food and smooth it around.  They are trying to figure out what it is and what it feels like before they bring it into contact with a very sensitive part of their bodies – their mouths.  F totally skipped that activity as a baby (it made her projectile vomit to see a banana let alone touch it) and it only kicked in when she was about 3 or 4 years old.  So we let her use her hands, to just touch and explore and to eat.  If this is something she needs to do before she can take the next step of taking a nibble, then it’s fine by me. (Restaurant behaviour is a bit different and she is ok with that, she knows why).

4.  Patience. Patience. Patience. And a kind voice.

5.  Give time for the choice to be made.  I start early, especially with dinner as that seems to take the longest. It goes like this:
Me: What do you want for dinner later?  we have X, Y, Z (hmm that’s a thought, maybe I should try alphabetti spaghetti.  Do they still make that?)
F: I don’t know
Me: ok, think about it or have a look in kitchen. I’m going to start cooking later
As time passes and dinner is getting made, we go through this process a couple more times, with the “deadline” for choice making getting closer.

6.  Seems like she can’t make a choice?  I just make something, put it on her plate.  She will either eat it or not.  Quite often she will – isn’t it great when others make the choice for you?  I mean, half of my conversations with my husband start with “what shall we have for dinner/lunch?” (hmm another date night is needed methinks).

7.  Involve her in the shopping: making the list, picking the stuff up in the shop, pressing ok on the pin machine (she loves this) and putting the shopping away when we get home.  Ok, that last one doesn’t happen very much but it’s on my wish list.

8.  Agreeing together with her what the rules are going to be.  Super duper important one here.  My agenda is to get her to eat. Her agenda is to eat, it’s just seasoned with a bit of control, wanting to choose and the occasional urge to just say no.

These all work.

But sometimes I just want to be listened to.  Not to discuss but to just say “here, eat this” and be obeyed.

I choose that word deliberately, obeyed.  It has nothing to do with eating really and is more about being tired.

Bringing up kids, who can think; make a plan; negotiate; consider the consequences of their actions; be creative, is hard work.  It demands the same things of us and sometimes, that leaves me tired and cranky.

So this last week the seed of doubt found it’s way into my mind.  It said “she’s just messing with me.  Am I stuck in the Princess and the Pea story here?”.  So I took the short cut, raised my voice and told her to “just eat!” It would be so much easier to have a robot that would just do what I say!  Sigh.  Needless to say, it didn’t work.

But a robot would not have given me a hug after seeing my tears. That affection came from the independent human being who can think for herself, who can make her own choices and who was moved to hug me, knowing that it would bring me comfort.

So what is the essence?

Our children are better people than we are

Positive psychology works

This week, F has been mostly eating sweetcorn.