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Ladies and gentlemen, we seem to be hitting some turbulence . . .

Man, I don’t seem to be able to post on here regularly. Other things in my life just seem to take over. Or I just haven’t been very disciplined. Take your pick.

How have we been doing in the last eight months? Well, things have been motoring along. Moo’s neurologist describes her medical future as “stormy”. She put that in writing. Basically, we are no longer looking for cures, we are “managing her symptoms”. She is still having TIAs and headaches but they are in clusters and there can be months in between with only low level activity, which makes life increasingly unpredictable and unplannable. Mr G and I have decided not to travel abroad with her for the time being. Walking into a hospital in England, demanding a drip and morphine, is hard enough, never mind with a language barrier and different ways of doing things. It sucks because it means I can’t visit my family in Italy but there we are.

Moo’s last scan showed no changes in her brain structure which is great. However, she is being referred for an Autism Spectrum Disorder assessment as she has some “red flag” behaviours. She was diagnosed with ADHD in June, finally. I’ve been saying that I thought she had it since she was three, before the Moyamoya, but no one took me seriously until the neuropsychologist said that she thought Moo should be assessed. Cue assessment at the age of 8 and diagnosis. Better late than never. Only issue now is finding someone to prescribe her Ritalin to see if it will work. Neuro team have given the ok but community paediatrician is not comfortable. Her paediatrician at the local hospital is happy to do it, love her, but she’s never prescribed it before so needs guidance. It’s going to take ages to get this sorted. Moo on Class A drugs will be an interesting concept. Only reason I am keen to try is that one of the potential side effects is raised blood pressure, which coincidentally could help her Moyamoya.

Reading about Asperger’s as recommended only did two things. Firstly, it confirmed a long held suspicion that I have had that my father has Asperger’s. My father’s life and behaviour is essentially a checklist of the typical behaviour of a man with undiagnosed Asperger’s. Secondly, I have a lot of the traits. I might even be classified as a sub-clinical Aspie. That is to say, I have the traits but not so severely as to be a hindrance to my functioning in life. It was quite the revelation to realise this but also a complete relief. It explained so much about my behaviour and my feelings when I was growing up. I have already been diagnosed with OCD, my father is severely dyslexic while very intelligent. Both of these conditions is co-morbid with ASD, as is ADHD.

In the last week, I’ve also had conversations with Moo’s SENco (Special Educational Needs Co-ordinator) at school. Depending on how she does this year, there is a significant chance that we will have to move her to a special needs school. This has been very hard to come to terms with. You always hope that things will start to resolve themselves but it is becoming increasingly obvious that while the Moyamoya may not have altered her brain structure, it has completely addled her pathways. The gap between her and her peers is widening, socially and emotionally as well as educationally, and it may become too wide by the end of this year. It’s a watch and wait situation. In the meantime, I need to do some research as there isn’t a special needs school suitable for Moo in our area.

Then I’ve become a joint chair of the school’s PTA. It might seem a tad mad when I am already dealing with all of the above, driving a business that I really love forward and trying to find time to write children’s books, but no other bugger was going to stick their hand up and our school is so amazing, in part due to the PTA. No chair of a PTA, no PTA and I just couldn’t let that happen. I did manage to coerce two other people to do it with me and I think we will make an excellent team.

As a result, I was at the Year 3 welcome meeting this morning. A mother comes up to me and says “I’ve seen photos of your daughter at Shooting Star” and my heart just sinks. There’s only one reason a mother would be at Shooting Star House and she goes on to tell me about her beautiful little 18 month old boy who has SMA Type 1. I had to hug her. I know what that means. I love Shooting Star, I love my friends from Shooting Star but I hate it when I meet people out in the real world and they say they saw pictures at Shooting Star. It chips away at my heart that someone else is going through something so awful too. I know we wouldn’t change the children we have and we are truly blessed to have them but it’s an intense bittersweet love that I wouldn’t wish on anyone.

Tomorrow I am taking Moo to GOSH for a video fluoroscopy where they are going to test her swallow. It’s been doing funky things of late. I’m praying it’s nothing and that I am being over cautious but you just never know. I’ve learnt not to have any expectations at all.

Later this afternoon, I’m taking Moo to get her beautiful long brown hair cut into a bob. I feel awful about it. She loves her long hair but she hates it being brushed or washed or tied up. She flips out and won’t stay still. She has to have her hair tied up, otherwise it wraps around her trache and goes down her stoma. It has become such a pressure on our relationship that I managed to convince her to cut it into a bob. If she didn’t have the trache, this wouldn’t be so much of an issue. But then again, she plays with one side so much, it has started to thin so it’s not just the trache. In the great scheme of things, hair isn’t that important but to a small eight year old who wants to have hair like Rapunzel, this is huge. It’s another instance where her medical condition is preventing her from having what she wants. It’s another small bruise to the heart.

So today, I am finding it hard to concentrate on work for all the above reasons. I have a meeting later about the PTA but, in the meantime, I think I’m just going to write about boys who live on the moon and escape from my life, just for a while.

 

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I’m supposed to be ironing, but . . .

I just have to say this. Special needs is expensive!! Granted Moo has her own private, unique little cocktail of conditions going on but the one that costs a bomb is Sensory Processing Disorder. It doesn’t help that I haven’t finished The Out of Sync Child, otherwise known as the parent’s SPD Bible. Between being a full time carer, mother, wife, house cleaner, pet owner (you wouldn’t believe how much time my two cats take up), administrator and slayer of the mammoth ironing mountain that never shrinks, I just haven’t had time to read it in full. Of course, Moo’s SPD doesn’t care about that. It is developing relentlessly and what it is doing now could make all of Moo’s other issues raise their ugly heads en masse. Basically, it won’t let her get to sleep. This is a child with a very limited energy resource and a strength of will that would have made Hercules baulk. So, what we have is a child whose mind thinks it can conquer the world continually and a body that can’t make it through the day. If she doesn’t get enough sleep, her body will crack up. There will be chest infections that could lead to hospitalisations, transient ischaemic attacks (TIAs) (that’s mini-strokes to you and me), headaches that make her scream in pain and, of course, the real evil monster lurking in the wings; the ever present chance of a major stroke.

And she’s not happy about it. We’ve had nights with tears when she just can’t get to sleep and she is so tired that all she can do is weep. Moo never cries so it is heartbreaking. We’ve had hours of playing in her bed, as fresh as a daisy in appearance. We, as parents, are very lucky. Once in bed, Moo just doesn’t get out, unless she needs a wee, thank goodness.

So we’ve tried a weighted blanket that I made, the beads cost a fair bit. It worked for the first week but things have moved on since then. It now works after she’s been up a couple of hours and I’ve given her a deep massage and then she only wants it on her legs and hips. Then we’ve bought the relaxing classical music, she likes it but it doesn’t relax her. I’ve bought a massage brush but it you do it too early, she loves it but it does jack to relax her. She’s taken to kicking her bedroom walls for the pressure feedback in her feet. It sounds like she’s having a party with a herd of elephants. Now I’ve ordered Lycra fabric to make a bed sock and a salt lamp. “What, pray tell, is a bed sock?” I hear you ask. It is exactly what it says on the tin. It’s a sock for your bed, well, mattress. Basically, you sew Lycra into a sock shape and slide it onto the mattress. It should be snug but not stretched too tight, a bit like a condom. The person climbs under it and it gives a deep pressure. The bed sock should give the right pressure feedback and the salt lamp should help with the orange glow to get her to relax but also the salt in the air will help her lungs.

All this on top of the private neuro assessment that we have booked with Hemispheres. I am hoping they will be able to tell me everything so I know what I am dealing with. At the moment, I deal with the obvious and hope I don’t make other stuff worse. It’s all a crap shoot.

And, yet, I still wouldn’t change a thing. This is the child that I took to London Zoo yesterday for the Special Children’s Day and let her loose in the shop. She was allowed to choose anything she wanted. There were books, girlie things, cups and saucers and what did Moo choose? She chose a very large, long, stuffed snake. No namby pamby pink teddy for her. No, sirree. She has a bright red and orange snake that is actually longer than her. With her bonus features, her desire to live life by her own rules, her medical puzzles; my kid rocks! God bless her.