Reality Check….

A lot of people ask me about Chloe’s eating and what exactly is the reason she ‘eats’ the way she does.

I have a theory so bear with me on this one. Most of us feel the ‘hunger’ feeling in our stomachs. We get grumbly and rumbly feelings if we don’t eat for a long time. Our bodies tell us usually that we feel like eating. In the same way that our bodies tell us we don’t feel like eating when we’re unwell.

Chloe has a metabolic disorder. Much of this disorder affects her development and growth. Much of it is about the brain development too. My theory is that she doesn’t actually ‘feel’ hunger. That although her tummy may rumble and she gets a feeling of ‘something’, she doesn’t know what that feeling is or what to do with it. Because her brain doesn’t send signals the right way to tell her that she’s hungry and that eating will fix the problem. Of course, this is just a theory. I have no idea. But I believe part of her behaviour and frustrations stem from this lack of understanding of what is going on in her body, she just doesn’t have the signals going around her body that tell her to eat.

Studies I’ve read online, in my copious amounts of research showed that rats injected with the SLOS mutation, who had babies, had babies that didn’t nurse, they starved to death. A basic human instinct to feed just wasn’t there. Though I believe this is not the case with all SLOS children, and since Chloe did nurse after she was born, I believe there is some amount of that survival instinct there. Which is why I think she’s so inconsistently inconsistent with eating. Some days she feels that drive to survive, and others, it’s all mixed up, the signals just don’t get through. But that old adage that ‘a child won’t starve…they’ll eventually eat’, well it’s rubbish. As an aside, there are many children out there who will flat out not eat and will starve and become malnourished.

I so wish I could understand what is going on her brain!

Along with this theory, I believe that some of Chloe’s challenging behaviour is a direct result from the weird sensation she gets, and doesn’t know what do with it…this ‘hunger’ feeling. As I’ve observed that when I have managed to get her to eat or drink she is far more settled. A lot more happy. Again, this is purely anecdotal.

For example, today, I sat with her for 1 and half hours. The first 45 minutes I treated the ‘mealtime’ like a therapy session. I brought out a bunch of foods, some I know she might like, and others she is more resistant too. Plus different tastes and textures. She played, we put blueberries in and out of containers. We squished our hands and fingers in chocolate custard… we pulled apart vegemite sandwiches. After 45 minutes she ate a strawberry plus some of her sandwich. Progress! But it took a while. A long while. But afterwards, she perked up, having not eaten for about a week (well she ate a few little things but not nearly enough)… her behaviour was less tantrum like and she actually seemed happy. At the moment though she is unwell, however, I have seen this happen before.

Unfortunately, I don’t think she is cognitively able to connect the dots to the feeling of being satisfied with the food and the feelings of hunger prior to the eating.

Today I discussed this theory with Chloe’s paediatrician. He thought it had a lot of merit and was interesting. I asked him whether we were at the point of thinking about a PEG feed. This is tube that is placed directly through the abdomen wall into the belly. For tube feeds. There are many kiddies out there with tubes for feeding, early on they often use NG (Nasogastric) tube, of which Chloe has had. And I fought hard to get her off it, but she is now at an age where that would just get pulled out and we would be reinserting all the time. Which would be a huge step backward.

We would be using the PEG or G tube to supplement her feeds. For the weeks when she goes on food strikes and needs more nutrition. It’s a tough call, because it can become the ‘easy’ or ‘lazy’ way of eating. And since Chloe has survived this far feeding orally it’s a huge decision to decide to go ahead with this. Not only for the implications of it, but also for the surgery. We need to make sure that she can handle the anaesthesia with her heart condition.

So her paediatrician will talk to those concerned and we can make a decision that will be the best for Chloe and her nutrition going forward. It’s hard to know if she would be doing better cognitively if she was eating a better diet…or whether her progress and development would be the same.

For example, many toddlers Chloe’s age have some understanding (of course this varies) of simple tasks or instructions. Like saying ‘where’s your nose?’ and they might be able to point out their nose and other body parts. Say ‘It’s bedtime’, or ‘we’re going in the car’ and they might be able to head to their bedroom or grab their shoes and walk to the car. Chloe does not have these skills yet.

Sometimes I think she understands when I ask her where the dog is, or where’s daddy? But on the whole, she hasn’t grasped these concepts yet.

I’m not being negative, this is reality. And whilst I can sit with her today (yes I’ve missed work today) and spend hours playing and eventually getting her to feed, that kind of time is not really a reality in every day life.

I recently had the OT tell me to try sensory play before each meal, plus the speechie suggested 6 small meals a day. This would be 30 minutes of play before attempting a meal, which could take 30-40 minutes… 6 times a day! My brain hurts just thinking about this. And I wonder if it’s worth it? Will it make Chloe happy or just further frustrate her? (Disclaimer – I love Chloe’s OT and ST…not a criticism there!)

This is reality. Chloe has difficulties. She’s cute. She’s funny. She’s amazing. But, there’s always a but… she has difficulties. It’s not all a bed of roses! It’s reality. It’s hard work, and this is just one aspect of Chloe’s difficulties. (Not mentioning the long discussion the paed and I had about her sleep behaviours – that’s another blog).

Why do I write this? Why do I put this out there? I’m not the only mum…Mike and I aren’t the only family out there battling these issues with their child. Lots of families struggle with issues with feeding and ongoing behaviours because of it. It’s a tough road. I write, because I hope that through this, there might be another person out there who knows they are not alone!

And they probably get the same silly advice that I often get. I posted a video this last week of some of Chloe’s behaviour when trying to feed her. I can’t post it on my blog as it doesn’t let me. But I had a stranger tell me, that Chloe wasn’t eating my food because it didn’t look appetising and that I should offer her a ‘rainbow of colours’. HA! If only it were that easy! A plate of skittles maybe? ‘Taste the rainbow’! I don’t get mad at the person, I did offer to help educate them about childhood eating disorders, and at that point she didn’t reply so I’m not sure what her thoughts were after that.

But I plead with others reading this…. eating issues like this, related to syndromes, or autism or sensory aversions, they are not easily solved. Families are living with these realities day in and day out. At home, mostly alone. Each day and each meal time can be source of anxiety. Offer words of encouragement… the last thing we need is ignorant advice from people who really don’t know.

So that’s where we’re at. Discussions to decide about Chloe’s ‘feeding’ future. At the end of the day I just want to see her thriving and be happy! And growing and developing and playing.

A smile…after a long time of playing with food! We got there in the end.

It’s not just ‘fussy’ or ‘picky’ eating!

Seriously, the next person who says this to me is going to get a mouthful….not of food! Okay, now that I’ve got that off my chest!

Chloe had her first cardiac checkup in six months today! It’s the first time in 19 months that we’ve been 6 months between checkups. So that’s a little milestone in itself. When the cardiologist first brings us in his room he always says,

‘How’s it going with Chloe? Any issues?’

‘Well, not with her heart. Just the regular feeding and sleep stuff.’

‘That’s very typical of Smith-Lemli-Optiz.’

Sigh. Yes it is. It’s so good that the cardiologist is aware of SLOS and the problems it causes. Chloe, at weigh in today was 9.5kgs. Still small…always small. Small and cute. He also checks that she’s not breathless when playing and quite active. I tell him that she’s very active…at all times of the day and night! She rarely gets breathless except when I am making her walk, she does ‘self regulate’ a lot. Which is great. The only time she really gets blue and shaky is when she’s really crying and screaming. Which is all perfectly normal.

An ECG is taken, blood pressure…SATS… weight…then he listens to her chest (can hear a slight wheeze which he hears when listening to her chest, but not when he moves the stethoscope to her back?!!) and does an echo. Perfect. Her heart function continues to be perfect. No leaky valves or problems, no fluid… SATS are 80 (which is great), ECG is perfect. Everything is looking great. He can hear a slight ‘flow’ murmur, instead of a structural murmur which he remarks is ‘interesting’. But everything about Chloe pretty much is ‘interesting’ and her cardiologist is often baffled by her! She is developing some clubbing on her fingers and toes (this is very normal with cardiac patients who have low o2) but all in all she’s doing great!

I asked about the Fontan surgery and her size. And he remarks that it’s likely she will be delayed for her Fontan due to her little size, the slow growth. Which is okay. And we should expect her SATs to drop but not anytime soon.

And as always the food stuff continues to be an issue. Let me explain, this is related to her syndrome. It’s hard wired into her. Most kids with SLOS struggle with food, and taking it orally. Chloe has got this far with oral feeds but it’s a daily battle. It’s not about being ‘fussy’ or being ‘picky’. And believe me, I’ve tried everything. Well, at least I think I have. On top of what is part of her syndrome, I also believe she’s very stubborn and has a ‘I will never give in’ attitude. This is a great personality trait, but like most strengths, it can also be a weakness.

Even the cardiologist today said that he could see she is very stubborn and obviously quite difficult behaviourally. I love it when I’m validated. Most people see little happy Chloe, which is great, but they don’t often see the ‘other’ side of her! Lucky them. She’s a little treasure, but boy does she have a stubborn streak and lets you know when she doesn’t want to do something.

Food and eating just happens to be one of these things she just doesn’t enjoy. I’m just hoping that somewhere along the way she will learn that food times are ‘eating’ times and they are important, and can be enjoyable!

We also continue to have issues with sleep but that’s another blog!

Recent pic.

Lifestyle choice?

Disclaimer: This might offend.

Having child with a disability isn’t a lifestyle choice. Seriously. I bet your wondering why I preface this blog with that statement. I honestly think that some people do think this is what you choose with your life. In fact, it wasn’t me who said this, it was Mike. Came up in a discussion about Chloe and the financial impact of having a child a with a disability.

Let me take you back. When Mike and I planned to have a baby, we were like most couples. Dreaming about regular stuff as a little family. Our first attempt sadly ended in miscarriage. In hindsight we most likely think that little bub had SLOS too and in many cases SLOS babies do spontaneously miscarriage. It was a very a sad time for us.

After that, we thought we would try one more time. We had planned on the future. Easy. Get pregnant, have baby, take maternity leave to care for baby…when leave is up baby goes to daycare and I return to my job. That was plan A.

That was our ‘lifestyle’ choice if you will. We would choose and plan to have a baby, return to work to afford our home and raise one child. It would be just us. It would be easy.

Oh so wrong! Along with the CHD diagnosis in pregnancy came much uncertainty about the future as you know.

Now we are 19 months along the journey with Chloe and our ‘best laid plans’ are so far in the distance I can barely recall what they were and how that was going to work. But having children is a lifestyle choice. It’s what you and your spouse decide together and you decide how you will make it work. There’s always a thought I guess in everyone’s mind about what if things go wrong, but I honestly think most of us think it won’t happen to them!

There’s this story that is often circulated amongst special needs families. It’s called ‘Welcome to Holland’ by Emily Kingsley. Honestly (and sorry if you’ve ever sent this to me) but I really hate this poem. Google it, you’ll find it. It’s basically about most parents dream about their unborn children…like you might dream about a special holiday to Italy. How you get packed, research…read guide books. You board the plane and without your knowledge you end up in Holland. It’s not what you dreamed, it’s not Italy… but it’s still pretty and there are many things to enjoy there.

I guess while I think there are many aspects of this poem that help people understand in some way what it must be like to have a child born with additional needs, I personally feel it doesn’t do it justice.

Honestly, I still had a baby… I sort of think that instead of ending up Holland I still ended up in Italy, just on a different tour than everyone else! For example, I’m still visiting the Coloseum, but I’ve turned up to late so the gates and closed and I just get to see it from the outside!

Enough with the metaphors though. Honestly, I do think people look at my little family and see how awesome Chloe is doing, how she’s thriving and making milestones. They perhaps see that two open heart surgeries are behind us and therefore things must be pretty good.

But bringing up a child with a disability isn’t just smooth sailing. Every day brings battles. This is not the life we would have chosen for our family. It’s not a lifestyle choice.

Why do I say this? Well for starters, I don’t choose to stay home. I’m not really cut out for it. There are many mums who are and some, like me, really need to enjoy stimulation out of the home. I loved my job as a teacher, and I miss it. I am unable to return to work due to Chloe’s needs and therapies, at least, unable to return full time. I have gained a part time position, and while that will help our financial position it won’t be our saving grace. Due to me giving up work for Chloe, we are unable to sustain some of regular financial obligations, yet, if I hadn’t given up work I whole heartedly believe that Chloe wouldn’t  be where she is right now (feeding orally, starting to walk, communicating). It wasn’t a lifestyle choice for us to stay home with Chloe attending to her needs. Would I do it again? Sure…in a heartbeat. It’s a small sacrifice in the big picture I suppose.

This brings me to another point. I am not a super hero mum. I am not brave and I am not better than other mums of ‘healthy’ children. I’m just a mum. It’s another point that gets to me. I know when people say it they are being complimentary, but still, I think it belittles mums to put others so high on a pedestal. Comments like:

‘I don’t know how you went through that.’
‘I couldn’t do it.’
‘Gosh your so brave.’

Sure, they’re well meaning. But I’m not a super hero. I’m just a mum. Most mums would do the same in my position. You would go to the ends of the earth and back again if you needed to do something for your kids. That’s all I do. I’m not extra special. I’m just doing what needs to be done to love my daughter.

Here’s the one that really gets my under skin, ‘You and your husband must be extra special to be chosen to parent a child with special needs. Only special kids choose special parents.’

I didn’t raise my hand when God was ‘giving out babies’. I didn’t say, ‘Yes please, pick me! I want the journey of parenthood to come with added obstacles.’

I urge you, those reading this, to not say this to special needs parents. It’s very patronising.

But does being a parent of a special needs child mean hard work? Yep, it sure does. It’s an every day battle. It’s a dark cloud always lingering in the background wondering about the future. But you push it away to focus on the positives. Like the milestones you thought you wouldn’t see. There’s extra joy in those moments I’m sure. I wouldn’t know because I’m ‘only’ a parent of a special needs child, I have no comparison.

I know this week, when Chloe took 5 unaided steps towards my arms, and fell into me knowing I’m her safe place to fall that I felt excited and overjoyed. But I also felt a little pang of sadness…along with some jealousy, but immense amounts of pride. I felt sad for the other SLOS families whose children never walk, some jealousy for the families that this doesn’t even enter their minds as their kids walked without problems. But mostly, mostly I felt pride. For my daughter has no idea she is different, she’s just writing her own book and rules.

But there it is. It’s not a lifestyle choice. I don’t choose to the make the financial and emotional commitments because I want to, it’s not choosing to buy a Mercedes Benz or a mansion on some rolling estate. It’s a choice made for you and really, once you’re there you do what any good parent would. You love your child in any way you can and provide all you can so that they grow up happy and loved.