Thursday 26 April 2012

Social Worker

I had the social worker from FECs come by for a visit today. I had mentioned to them I was drowning so she came out to see what the go was and what can be done before I go completely mad.

All in all it was an encouraging meeting. She is going to take all her notes back to the office, make some phone calls and see what respite and help she can organise.  I'm not getting my hopes up, but at least someone is listening. At the end of the day what I really want is for my kids to sleep. I hate even asking for help. But in recent times I've realised that for the benefit of the kids and myself I have to get help while we are sorting that out.

*cross fingers*

Tuesday 24 April 2012

Oh What A Night!

In total I think I got about three hours broken sleep last night.

The night started with Merryn waking every half hour from 9pm to midnight. From then I was getting nowhere getting her back to sleep. Andrew took over at 12:30am as I started to loose my temper and got to the point I could hardly stand up anymore. He finally got her down at 1am and I passed out.

At 2:30am Connor woke up. I tried to settle him but it was one of those nights when he just wanted to be up and playing. Prior to converting the cot that would have meant hours of screaming but now it means he wombles around his room and even escapes out on forays around the house. He climbs up on his change table and goes through his books and turns on his musical toys. It was actually much easier to cope with. There was no hysterics and everytime I came and put him in his bed he was quite happy to lie down and cuddle into his blanket. About 4am he finally went back to sleep.

4:30am Merryn woke up screaming her head off. I was out on the couch, because I could't get back to sleep from Andrews snoring, so it wasn't until he came and woke me up that I realised what was happening. Thankfully I was able to settle her quickly by breast feeding her in bed and I got to sleep until 6am when both kids bounced up ready for the day.

I can't wait until next week when I go into Ellen Barron with Merryn!!!! I know it won't fix the Connor stuff but I can cope with that if I can get her sorted out. Both of them tag teaming is just cruel.

Monday 23 April 2012

Moving Connor to a Bed

We have talked about converting Connor's cot to the toddler bed for a little while now, but everytime we did we decided it just wouldn't work.  We figured he was still waking so often during the night that he would end up wandering around the house and would get even less sleep than he does now.  Not to mention I would then spend all night putting him back in bed.

On Saturday we finally did it!  Worst case scenario it would go so badly we'd be converting it back the next day, so why not.  Not long after Andrew started converting the cot he called me in.  Connor had decided to help daddy and was operating the rachet screwdriver to loosen the screws so the side could come off.  It was so utterly adorable that I took a short video of my little handyman at work.


I should mention we've put a removable bed rail along the length of the bed with a gap at one end so he can get in and out himself but not fall out.

That night Connor was so tired (after a big day out and no midday sleep) that he was crying to go to bed.  We tucked him in with his blanket as usual and crossed our fingers.  He passed out immediately and on his first wake up cried for us to come in but didn't get out of bed.  The second wake up he made a break for it (he was obviously a bit more awake that time) but Andrew collected him and got him back into bed after some cuddles.  I found him the next morning with his door ajar and his feet hanging off the bed, I suspect he'd checked out the hallway at least one more time but decided to go back to bed.

With night 1 pretty successful we decided to stick with it so last night we left his cot as a bed again.  This time we heard some suspicious sounds after a while and when I went in he had climbed up on his change table and got himself stuck.  During the day he can usually get up and down, but I think in the dark he got a little scared.
Connor and Merryn sprung climbing the change table
I put him back to bed, wrapped him in his blanket and this time he went off to sleep.  He woke about 10:30pm but once again just cried out and I went in.  About 1am Andrew found him asleep on his bedroom floor wrapped in his blanket.  We hadn't heard a clunk or cries so we think he just got himself out and and decided the floor looked like an interesting place to sleep.

All-in-all I think it's a brilliant success!  He's not got himself wound up or upset at all and that's probably because he can just get out of bed whenever he wants.  But he's letting us put him back to bed with no protest.  Of course it's only been two nights so far!  The best bit about it is he gets himself up out of bed and starts to play in the morning, meaning I don't have to wake up to grizzling and crawl out of bed to get him up at sparrows fart in the morning.

I am very, very proud of him, he's being such a big boy.  :)

Thursday 19 April 2012

Broken Nose

List night I thought Connor had broken his nose!  He was doing a lap of the lounge room, at pace, in excitement of his imminent bottle and bed time ritual, when he slipped over and fell on his face.  Much screaming and hysteria ensued.  Normally he is actually very good when he hurts himself, so if he get really upset we know he's really hurt himself and take it seriously.  Nothing Andrew did could calm him so mummy took over and finally managed to get him into bed curled up with his blanket.

Note stripe across his nose.
30min later his started crying hysterically again.  Not being able to calm him we bought him back out to the lounge room, gave him some Panadol and after about 40min put him back to bed.  Less than an hour later he was crying hysterically again.

We finally decided we had to get serious and broke out the Pain Stop.  Neither Andrew or I like to medicate and this stuff is pretty full on.  We got it to calm Connor enough to fly home from holidays on the plane last year (he had a panic attack on the flight up and was hysterically trying to get out into the aisle and get out of the plane in flight).  It works a treat in calming him and puts him to sleep, but it's not something you would use regularly (I've heard rumours about parents who do though).  Thankfully it worked and he finally went to sleep and stayed asleep.

This morning I woke up and fearfully went into his room, wondering if I was going to see a black and blue nose and need to go to emergency.  Thankfully it looks like a bruise that goes across his nose is the only sign of the fall.  This kid is taking years off my life!  :)

The Lack of Respite and Resources

Both my sister and I have suffered from severe sleep deprivation for a number of years now because our kids don't sleep.  Now we have a diagnosis and are linking in with services we have been asking for what sort of respite we could get.  The problem is there is no money in the Australian health system for children with disability.  Everything is being run on a shoestring budget, the waiting lists are usually 6 to 8  months long and kids are getting therapy once a fortnight if they are lucky.  It's fine if you have money, you can pay for it all privately at around $140 per session, but for those of us who can't afford that we just have to muddle through the system and hope it's enough.

And the kids aren't the only ones treading water.  We can't afford to put Connor and Merryn into daycare.  Not that I actually want to, I love my kids and I chose to be a stay at home mum so I could be with them while they were little.  I am of the belief you don't bring another person into the world and then send them off to other people to raise (yes I know a lot of people disagree with me on that point).  But with the long sleepless days and nights I have, it would be nice to have a few hours a week where someone else could watch the kids while I have a nap or heaven forbid, go out and have a coffee in peace.

Unfortunately we aren't a severe enough case to qualify for any respite at all.  There is such little money in the system for respite that even someone like my nephew who is FXS, has been tube/peg fed since 3 weeks old, becomes hysterical when taken out of his house, and has to be fed tiny amounts every 2 hours (if he is given proper size feeds he has fits and passes out) is only severe enough for 1 hour a week.  My sister is mentally and physically exhausted (and I'm not far behind her) and our government is cutting funding from disability services so they can get the budget in surplus!  The people we are talking to want to help us, they can see we need help, but they can't do anything about it.  They have to wade through a sea of paperwork and red tape and justify every tiny movement they make.

So today I'm going to my sisters house and we are going to try to do an OT session of our own for the boys.  We'll make cups of tea to stay awake and we will see if we can find a way to treat our boys ourselves.  What else can we do, we certainly can't just stand by and wait for our government to get of their hands.


Wednesday 18 April 2012

Just Keep Trying

Talking to my sister yesterday, her FXS boy is about 9 months younger than Connor and inevitably the two get compared. She was despairing of all the things her little man still doesn't do and it made me think about Connors development.

I have often despaired of Connor being able to do things. He was nearly 2 before he even touched food or ate more than a purée. He would vomit rather than touch anything with texture and we didn't even mention craft with glue and paint. After nearly 6 months of therapy and playgroup he's a different boy. Now you can't get the paint brush out of his hand, he's gluing projects together, climbing up the slide by himself, putting milk away in the fridge and climbing up onto his change table for nappy changing. He's following complex instructions like 'pick that toy up and go into the lounge room' and opens the car door and gets up into his car seat all by himself. Yesterday he even went and got the broom and starting 'sweeping' the lounge room.

We were told early intervention was the key with these kids and yesterday, talking to my sister, I realised we were already seeing the truth of that. The combined wisdom of the OT's, Speach Therapists, feeding team, nutritionist and peadeatricians has guided Connor forward and shown me how to help him as well. But most importantly is has shown me not to give up. Just because Connor couldn't do something one week didn't mean we didn't keep trying. When faced with a tunnel 12 months go Connor freaked out and wouldn't go near it. Now he happily climbs through all by himself grinning madly at how clever he is.

We don't know what his future is or how far his development will go and it's certainly much harder to gauge with him still not speaking a word. But I have to remember that he constantly surprises me and that his enthusiasm and curiosity can take him a long way. I shouldn't despair, I should just remember how far he has already come and never give up.

Tuesday 17 April 2012

Meeting Some Other Mums

My sister and I met some other mum's with FXS kids yesterday.  I had been talking to one mum on Facebook and we decided to meet up for a chat.  My sister and the other mum, who's son is newly diagnosed, came along too.  I had both my kids and my sister had her 2 year old.  The other two mum's had their kids in daycare.

It was fabulous.  I hadn't realised how much more effort is required to socialise with people who aren't FXS families.  All four of us have kids around 2 years old so it was lovely to be able to say how we really felt and have validation from other people who feel the same way.

We all have feelings of why us, grief (over the loss of the children and lives we thought we would have), confusion (trying to fight through the system for help), fear of the future (how our children will end up and how we will cope), isolation (friends and family have pulled away and left us very alone) and hope (that a cure will be found for our babies).  These aren't feelings that other people seem to be able to understand.  We are supposed to just accept what is happening, not dwell on what 'might' be and above all keep the embarrassing little cherubs out of sight.
I know personally I've been ostracised because Connor is loud and crashes around and he doesn't interact with the other kids how he's supposed too.  This causes the other kids to either reject him or get upset that he's around.  Whereas I'd really like the other parents to just accept he's different and teach that to their kids, they have chosen to keep their kids away from him.  It's no wonder we live in a society that is so judgmental when kids are being taught these lessons by the example of their parents.  It makes me very sad for Connor and fearful for his future.  He is a wonderful, loving, beautiful boy.  But what if I'm the only one who ever sees that?

The four of us didn't stop talking the whole time we were together.  We not only talked about our feelings, but also how our partners are coping (or not), what we are doing for our kids and gave each other advice and contacts.  Needless to say a playdate with all the kids is being organised.  We hope to catch up regularly from now on.

Oh and one other topic came up that was rather interesting and kind of scary.  None of us had any idea we had FXS in our families and one mum asked us all if we'd had any signs before our kids were diagnosed.  Strangely enough we found similarities in our mothers.  Both in behaviour and 'personality'.  I hope it's not a sign that is how I will become.  I feel like it's something we should somehow let the researchers know about, but I'm not sure how we'd do that.

Well I should go and get Connor to eat his breakfast.  He's Wombling around in his pyjamas ignoring it (Merryn has hoovered her's down as usual).

Wednesday 11 April 2012

Summer 2012 Newsletter

The Fragile X Association of Australia Summer Newsletter has now been released. It has announced the new DVD I've been talking about as well as a few other things I thought sounded really interesting.

 - Clinical Trial in Adolescents with Fragile X
 - Fragile X Research Symposium Brisbane
 - Article: “What we know or need to know about Fragile X premutation – a brief account”, by Dr Danuta Z Loesch
 - The story about 22 year old Hugh (it made me laugh and gave me an insight into the possible future for Connor)

If you want to have a look the link to the newsletter is: Fragile X Association of Australia Newsletters

Friday 6 April 2012

Little Miss Merryn can Boo!

As all parents do, I play games with my kids and peek-a-boo is a favourite (singing songs being the undeniable top of the charts).  For a while now Merryn would cover her face with her hands to peek back, but this week she's started to say Boo as well.  It's kind of more of a B and very little oo, but I know what she means.  She has such an intense look on her face as she is doing it which is followed by delighted giggles.  It's soooo cute!

It's even more wonderful to me because Connor still doesn't do things like that.  I've been told (and read) that FXS is very different in girls and Merryn's Boo seems like a good sign to me.  Of what I don't know, but it seems good.  :)


Thursday 5 April 2012

Fragile X Awareness DVD

The Understanding the Fragile X Syndrome DVD has now been uploaded online, you can view it below through vimeo.


Monday 2 April 2012

Merryn's Sleep

Our little princess continues to be a challenge in the sleep department.  I know all the things I'm supposed to do to sleep train her, but I've got no reserves left for the fight and she seems to have stamina to burn.  So I went to the GP the other day and got a referral for the Ellen Barron Family Centre.  I've talked about them before, they tried to help us with Connor back in the early days.  It usually takes months to get in to see them but I got a call back the day after my form went in and they said they will get us in, in a few weeks time.

I'm really relieved.  Andrew and I are struggling to keep up with both kids at night and if she screams for too long then it wakes Connor up.  He wakes up often enough all on his own without help and these days if he wakes up it's usually for the rest of the night (I think because he's getting much better sleep early in the evening from the Melatonin so he has more reserves to fight going back to sleep again).  The result is I give in and she sleeps in bed with me waking me up every few hours to resettle her.  Not a sustainable solution, but if I don't then she yells and screams for hours.

So it's boot camp for Merryn and I.  Connor will stay home with daddy and hopefully they will have a quieter and more sleep filled week with us out of the mix.  And of course I hope by the end of it Merryn will be sleeping in her cot at night and having proper daytime sleeps (she maybe sleeps for 30min twice a day if I'm lucky).