Progress is Progress

Runa is ten and a half months old now, and this is a significant age for us as Nina was ten and a half months old when she started walking. It stands out in my mind as a specific age where I can see so clearly how delayed Runa’s development is when compared to her crazy big sister.

It can be far too easy to compare Runa to other children her age, and even more so to compare her to her sister when she was her age. As you can imagine, these comparisons can leave me feeling a little bit bitter and deflated.

As ever with my special girl, it is important to focus on how she is progressing and how well she is doing. Given everything that is going on with her (a variety of brain malformations and epilepsy), she is doing so much better than anyone could have predicted.

She is continuing to make steady progress with sitting and can sit unaided for a good wee while so long as something is taking her interest. She is also able to bear weight whilst standing if someone is holding onto her.

Runa giggles, smiles and interacts beautifully. She is particularly fond of other children and men with beards. Though she has yet to develop stranger anxiety, my parents have both noted that she settles much better with me than with them. This is a step in right direction as she used to be just as happy with anyone- so long as she was getting cuddled she was happy.

My girl has a great appetite and will eat anything on offer. She is getting gradually better at putting food in her own mouth and is working slowly towards chewing (rather than only swallowing). She still needs support to hold her cup, but when left to it she makes a great effort to take a drink by herself.

Runa is continuing to make good progress with her fine motor skills and when she’s in the right mood she will grab things very tight. Daddies beard and nina’s hair are solid favourites and she is also fond of knocking down small towers.

Runa has preferences; she loves to look at picture books and will watch TV if the colours are bright or contrasted enough. In her bouncy chair she has a definite favourite direction to face so that she can move the right toy about. She also loves to watch noisy toys (and coffee mugs) move around.

Is Ru doing everything other ten month olds are doing? Of course not, and it would be seriously unfair of anyone to expect that of her. But she is doing fantastically well in spite of everything she has to face. She continues to inspire me, just by being herself, everyday.

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Seizures

Seizures make me miserable

Runa’s seizures are very subtle. When she has had them in front of other people,  or people have seen videos of them,  most (including doctors) have questioned if they are actually happening.
Once it was accepted by Runa’s medical team that the seizures were back they were labelled as absence seizures. Reading about absence seizures, I could see why they thought that, however I wasn’t entirely convinced. Regardless, I trusted the experts whilst continuing to record the seizures each time they happened.

Finally once the doctors had a few months worth of filmed seizures at their disposal, combined with me putting pressure on the medical team to confirm that they are absence seizures,  they were in fact identified as focal seizures.

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Runa is trying another medication to try and control these but usually is having one seizure every other day.

I should count our family lucky as so many aicardi girls are having several seizures a day. I am in awe of them and their families for dealing with the heart ache so well,  because one seizure every few days is exhausting me.

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My beautiful, bright and interactive baby loses what makes her Ru.  She stares off to the side,  lips smacking and arm twitching, and she doesn’t seem to realise I’m there. I gently rub her face, wipe her drool away and mutter “it’s OK baby,  you’re alright” but there is no response.
When she comes out of her seizure she is tired and sleeps on me and I cherish these moments; the bad bit is over,  hopefully for another few days,  but I have to wait for her to recover to get the reassurance that’s she’s back to herself.

So far she has always gone back to herself after a good sleep. She returns to her smiles, giggles and everything else that makes her who she is,  and I live in constant fear that one day one seizure will change all of that.

I’m trying hard to learn as much about seizures as possible, which is tricky when my brain isn’t exactly wired in a scientific manner. But I will persevere and fight on. I am determined to become an expert in every aspect of Runa’s condition; this way I can support her as fully as I can.

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In the meantime we’ll see how the new medication goes and continue enjoying Runa’s quirky little ways in between seizures.
She still amazes us every day.

Happy Birthday Dr Aicardi

Jean Aicardi (8 November 1926 – 3 August 2015)

(copied and pasted from various pages)

Jean Aicardi was arguably the greatest child neurologist of the modern era. His name will live on in the two separate conditions that he described, Aicardi syndrome and Aicardi-Goutières syndrome.

Aicardi first described the rare genetic form of epilepsy known as Aicardi syndrome today. This rare epilepsy disorder, that almost exclusively affects girls, is primarily defined by the underdevelopment of the corpus callosum, holes in the pigmented part of the eye, and infantile spasms.

Though Aicardi retired at 65, his official retirement did not stop his life’s mission to help children with neurological problems. He continued his work well into his 70’s at Miami Children’s Hospital and at the Institute of Child Health in London. He mentored many who are now national and international leaders in child neurology.

His legacy is as much in his successes as it is in the success of those whom he taught and inspired.

Runa and Aicardi Syndrome

Runa has the classic triad of Aicardi syndrome: partial agenesis of the corpus callosum, two choroidal lacunae on her left eye and she developed infantile spasms in hospital which are now under control. In addition to this, Ru also has areas of polymicrogyria, heterotopic grey matter nodules and distorted ventricles in her brain. She averages at one focal seizure every other day, has global developmental delays and is missing one set of ribs. She is the happiest, most cuddly, strong and resilient person I know. She is curious, beautiful and inspiring. She makes our family complete, she is amazing ❤️

A wee poem

9 month in, 9 months out.

It’s not always perfect, it’s not always fun
But my heart almost bursts when I hold you near
9 months of pain and discomfort for mum
9 months of questions since you’ve been here.

It may be cliché, your smile lights up the place
It’s hard to believe there’s something so “wrong”
But the curiosity and glee, clear on your face
You keep showing us all, you’re incredibly strong

My perfect girl, you brighten each day
The future is scary but the present is good
We’ll enjoy every second, go our own way
Because we fit together, just as we should.

Grabbed

Today I had to fill out Runa’s disability living allowance form. A lovely man from Stirling Carers Centre came to the house and helped me fill in the forms, and he warned me that it wasn’t going to be pleasant and that I might get upset; looking at my daughter from an objective point of view and pointing out exactly how her disability makes her different to other children was never going to be an enjoyable task. However, I initially shrugged off his warning, feeling secure that I could separate the Aicardi syndrome girl on paper from the bright and beautiful child in front of me.

Throughout the meeting there was laughter, banter, serious chat and lots of writing and after an hour and a half it was all done and dusted and I felt OK. Then as the day went on I felt less OK. By the the time I’d got the girls in the bath this evening I felt physically and emotionally exhausted.

I spend so much of my energy seeing all the positives about both of my children; I spend so much time celebrating everything that Runa can do, all the while knowing fine well what she can’t do (not to mention the hefty list of things she might never be able to do)… Spending an hour and a half flipping that on its side has left me drained.

So, I felt it pertinent to lift myself back up again and write about something I’ve been meaning to share for a couple of weeks. Runa is grabbing at things!

Way back in May, before we first went into hospital, I had noticed that Runa wasn’t reaching out to grab things yet. She was lifting her head when she was on her tummy, tracing objects with her eyes when they moved and was incredibly sociable, so with no other evidence I thought this was just an area that she was a little behind in. After being in hospital, with the benefit of hindsight, I realised that this was in fact the first indication that there was a problem.

Seeing as this delay has stuck in my mind as the first sign of Runa’s condition, it is something I have since been trying to support her with. For months I have endlessly placed toys in her hands for her to feel, supported her to hold a tippy cup and bring food to her mouth and pressed her little fingers into an array of “touch and feel” books. It has been very slow progress, but progress non the less, and I finally feel that the hard work is showing genuine signs of paying off!

Runa has started deliberately reaching out to touch things. She actively grabs at toys, material, sensory objects and people’s noses! Though her coordination is still lacking, there is a clear determination to grasp at objects, a determination that wasn’t there until recently.

So with this little developmental leap, paired with her physio making steady progress, Ru is slowly making her way towards her milestones. And I can see that she is so much more than just Aicardi syndrome or just the disability that I had to write about today. She is happy, sociable, curious and cuddly. She is beautiful, inspiring and resilient. I am so incredibly proud of my girl.

Let’s Hear it For Inclusion!

When I was at school I don’t recall experiencing peers with complex additional support needs or disabilities. I remember there was mention of one child with epilepsy and I can remember a fair few children with learning difficulties but nothing more challenging than that.
Since working in early years over the past ten years I have seen a real shift in inclusion and we now seem to be raising children in an educational setting along side their disabled and delayed friends. I have seen children leave nurseries I’ve worked in, then going on to main stream education with a variety of conditions such as global delay, downs syndrome, Williams syndrome, cerebral palsy, autistic spectrum disorder and probably a few more I’ve failed to mention.

Before having Runa I remember feeling so positive about this shift in inclusive practise and thinking of the positive impact it would have on the “neurotypical” majority. As disabilities become normalised and embraced – moving away from any sort of taboo- these children will grow up more understanding, compassionate and open minded than we did back in my day.

Every nursery I’ve worked in has embraced makaton sign language, and each nursery has given children and their carers the opportunity to educate other children and staff about their disability or condition.

I am very fortunate to have had the access to educational settings professionally and have been so lucky to work alongside children of all different abilities. I have been able to use what I have learned when supporting Nina to understand additional support needs (ASN) that her friends have had. Now, even more importantly, my background is supporting me to help Nina understand what’s going on with her sister.

But how do parents who have not had the advantage of working with a diverse group of children support their own children to be inclusive of those with ASN? Here’s 4 tips that I think may help:

1. Support Responsibility

I remember talking to a group of boys about appropriate behaviour and what to do if someone is behaving in a way that makes you sad. One wee chap said “my dad says if anyone hits me I’m to hit them back.” it’s never fun having to tell a child that their parent is wrong, but I did have to explain why that wouldn’t be the best course of action. I didn’t think much more about it until my own daughter came home from nursery saying a little boy had been pulling her hair. I asked how she reacted, and being frightfully well trained she told them “no thank you” and asked a grown up for help. But the child kept doing it. I asked Nina which child it was and she told me. Once I heard his name I knew exactly who it was and knew, from a grown up perspective, that he had ASN. I explained to Nina that he didn’t understand that he was hurting her, he needed a little extra help and he was still learning how to be more gentle. I reassured her that she had done the right thing and she was happy that she understood better why some children might behave in a way that she deems unfair or inappropriate. It made me think about the wee boy who’s dad had told him to “hit back” and what he would have done in that situation. Without knowing this child’s complex needs and delay in understanding, his dad would have had his kid hit him; a lesson which would not benefit anyone! Every parent should endeavour to support their children to make responsible choices and know that violence is the incorrect response in any situation. If they are unsure, uncomfortable or scared they should be encouraged to seek out an adult who can use their best judgement to defuse the situation.

2. Support High Expectations

Nina was talking to me about her friend who has downs syndrome. He is a character and can be a real cheeky monkey and Nina had somehow gotten it in her head that it’s because he has downs syndrome that he can be cheeky and that he is unable to control this. Me and her dad explained to her that for some children it will take them a bit longer to learn how to behave properly but they can still learn. She can help her friends (and her sister) to learn by showing them how well she behaves, shares, etc.
We should all have high expectations of our children regardless of their diagnosis and we should encourage our children (and other adults) to have high, yet realistic, expectations too. Just because a child hasn’t learned something yet, doesn’t mean they won’t. But if they don’t have the support of their parents, peers and everyone else they will be battling even harder to succeed.

3. Support Understanding

If your child utters the dreaded phrase “what’s wrong with that boy?” at the shop, park or what have you; chances are your immediate reaction will be to shhh your kid and tell them to stop staring, stop being rude etc.
It is highly likely that your kid doesn’t realise they’re being rude. As curious little creatures they just want to find out about the world.
Equally true is that the majority of parents with ASN kids will not be offended that your child is curious. They may not want to engage in an educational dialogue with you, but rather than shhing and going red, take a deep breath and answer the question as best you can. For example: “there’s nothing wrong with him, he has downs syndrome. At home we can find out a bit more about it” or “there’s nothing wrong with him, some people need a wheelchair to get around” or even “there isn’t anything wrong with him, but he has a condition that I’m not sure about”. There are so many wonderful books and stories to support children to understand their ASN peers, embrace this curiosity and learn with them.

4. Support Kindness

Most importantly, encourage your children to be kind and build friendships with their ASN peers. In doing so, not only will the children with ASN benefit, but your children will develop life long social skills that will aid their interactions with the disabled community in the future.

As the world becomes more inclusive, understanding and supportive our children are so lucky, regardless of ability, to learn in educational environments that value and respect them all. We parents, as their primary educators, should take any opportunity to facilitate them to become as compassionate, understanding, supportive and supported as they can be.

Five Stages of Grief

Given Runa’s complex diagnosis, it was only a matter of time until the seizures re-emerged. Luckily they’ve not been the scary convulsing seizures that first led us to hospital, but absence seizures- less scary but still unsettling.
A few short months ago this sort of event would have left us shaken. We certainly do not take it on our stride now, but it’s funny how much more accepting of this aspect of Runa’s life we are.

Acceptance is an interesting thing and while we accept that our child has epilepsy, developmental delays and an uncertain future, we focus on positive acceptance; not complacency and certainly not “giving up”. Our daughter is not a diagnosis and she is capable of wonderful things.

We’ve all heard of the five stages of grieving; denial, anger, bargaining, depression and acceptance. While I was sitting in A&E after Runa’s most recent visit to hospital I felt very reflective about the two weeks we spent at hospital during the time of her diagnosis. We’ve come so far as a family in that time and we’ve become so accepting of our situation. Of course, I did go through each of the stages before reaching “acceptance”

Denial.

As Ru was having seizures and the doctors were doing many tests and giving us a mass amount of new information, denial was difficult. There was no denying there was a big problem. Denial still reared it’s head, though, via heartbreaking internal thoughts. The most painful of these for me was; “this isn’t happening. This is just a terrible dream. I just need to wake up.” it just didn’t feel real, any of it. This couldn’t be happening to my perfect baby and my perfect family, this wasn’t reality and I just needed to wake up. But it was reality. It was really happening.

Anger.

For me this was very self inflicted. If I hadn’t had this while I was pregnant, if I hadn’t done that while I was pregnant. Even “if I hadn’t felt sick that time on the ferry in my first trimester.”
I was genuinely so angry at myself for doing this to my daughter, I felt furious that I’d caused this horrible thing to happen. Obviously it wasn’t my fault and somewhere deep down that logic was trying to come out, but no matter how many doctors told me it was nothing I did and there was nothing I could have done differently (and explicitly saying that it was impossible to have been my fault), anger still ate away at me…

Bargaining.

I started to look for solutions to the problem, thinking that maybe I or Stewart had the same brain malformations as Runa without realising it and she would grow up just fine. I kept thinking that the Dr’s had mixed up the test results, thinking that they read the scans wrong. There must be something that we could work out to change it… But there wasn’t.

Depression.

This certainly hit me the hardest. I lost 9 pounds during my two week stint at hospital. I could barely get up to brush my teeth, I couldn’t eat, I was hardly sleeping and I was so tired and drained, so low and helpless. My hands and feet were constantly tingling and my muscles always ached. Nurses would come in to see Runa and I would be cuddling her on my bed and weeping uncontrollably. I felt like I was in a dank pit of despair that I’d never escape. It was all frightfully melodramatic.

Acceptance.

Leaving hospital, returning to my home and being with my other wonderful Wyllies did wonders for the healing process. Getting used to the change in our lives, the change to the future we thought we had, has helped me arrive at the peaceful stage of acceptance.

Owning this situation and championing my beautiful daughter whilst raising awareness about disabilities, rare conditions and developmental delay has empowered me. I am so incredibly proud of my daughter. And reflection has helped me to realise I am indeed incredibly proud of myself. I overcame the hardest thing that’s ever happened in my life and though there are still many lows (such as the recent seizures) I am proud of myself for endeavouring to see the positive and for working hard to support my daughter; not giving up and seeing her as the horrific diagnosis she was given.

I hope that every parent in a similar situation to ours manages to feel proud of themselves, because they are doing an amazing job; working so hard and finding joy in fairly bleak circumstances. It’s hard work, but it’s beautiful and enriching work too.