Family in Crisis

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That is what we are considered at the moment.

Since my almost-breakdown in November, so many people have been brought into our lives to support us.

The school is making themselves as amenable as possible when it comes to having to have the boys off due to Max’s lack of sleep.

We finally have a social worker which means doors are opening that we were unable to pass through without having one.

We have a sleep counsellor, more input from the occupational therapists, Max’s PECS book is now with us at home as well as nursery, and we have so many people coming to our house for appointments it seems like we don’t have more than a couple of days to ourselves each week.

It’s exhausting, but good.

After our sleep counsellor’s first visit on friday (we’ll call her SC for now), he woke at the usual time of 2.20am.

Bless her, she was so sure he would sleep through, or longer at least.

But since Saturday night, I’ve moved his bedtime to an hour later.

And he’s slept through since.

I don’t dare wonder if this could be the start of him sleeping through more regularly.

Hell, even if he slept through four out of seven nights a week it would be a vast improvement to what we’ve been going through recently.

Max is amazing me with the new things he’s started doing.

But with learning new things, comes a very tired little boy. Something hugely compounded with the 4-6 hours a night average he’s been getting over the last 3 months.

His aggression has reached new levels.

He’ll hit, kick, pinch, and headbutt when he’s upset about something.

On Friday, he managed to headbutt me right in my throat.

I was totally blindsided by it.

Luckily our SC was there, and able to help me get him down the stairs safely so I could go have a moment to compose myself.

The realisation that Max is at the severe end of the spectrum is becoming more apparent these days.

And that’s hard.

Really hard.

You can’t help but think of your childrens’ futures, and when I think of Max’s, I get such a guilty feeling.

I know that at some point, once he’s a teenager most likely, when he’s bigger and stronger than me.

When he’s hormonal on top of dealing with the frustrations he has trying to live in this world where everything is so difficult for him to even begin to comprehend.

There will come a point when I’m no longer able to care for him in the ways he will need.

The knowledge that one day I’ll have to let my beautiful boy be cared for by others, it makes my heart so heavy.

And it’s something that I do try to put at the back of my mind.

But it’s hard when he’s finding things so difficult and lashing out.

It’s hard when he’s kicking my shins and headbutting me in the middle of my chest, trying to claw at me and so frantic he just doesn’t know what to do other than fight everything that’s within reach.

We are now labeled a family in crisis.

Because really, we are at the moment.

But hopefully once everything that’s been put in motion has been put in place, we will be able to move on to being just a family again.

A different family, but a happy one.

One that can function well on a daily basis, instead of the struggles we’re facing at the moment.

So I’m putting my trust in the people who have come into our lives.

If Max continues to sleep through, everything else will become easier.

As it inevitably does.

Sleep makes everything easier.

Until then, I’ll keep grabbing naps when I can and make the most of the life we’re in.

I may not be able to change the situation we find ourselves in myself, but I think I might be able to with the help in place.

And I can choose to trust that change for the good will happen in time.

 

 

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37 Comments

  1. February 6, 2013 / 11:29 pm

    Hopefully having the sleep counsellor and social worker means you’ll get access to support to get you through the tough times, and things might calm down? Fingers and everything else crossed for you guys. S x

    • February 7, 2013 / 9:35 am

      Thanks Sally. :)He slept through again last night, so things are starting to get a bit easier from that point alone. Fingers crossed it continues! x

  2. February 6, 2013 / 11:30 pm

    Oh my lovely :(((( huge hugs )))

    • February 7, 2013 / 9:37 am

      Thanks honey. *hugs* you right back x

  3. February 7, 2013 / 8:40 am

    It’s hard to comprehend the difficulties you face but you do have the support and there are organizations to help you get through. Just take each day at a time and forget about the future for now. Getting through the here and now is more important.
    Take care,
    CJ x

    • February 7, 2013 / 9:41 am

      That’s the idea. It’s much easier after a full night’s sleep, which he’s been doing for the last 5 nights now! I can’t remember the last time he slept through that long without it being because he’s not well and doped up on calpol! x

  4. February 7, 2013 / 8:41 am

    Having a social worker makes so much difference. We had a sleep counsellor as Luke and Jenna would be up till 2am then get up at 6 am, its amazing what tricks they do know and hope it helps you , like it did us. I hope things will get better for you and you get the support you need . Big hugs xxxx

    • February 7, 2013 / 9:42 am

      Thanks sweety. Moving his bedtime to an hour later seems to be the key, I think! Thank goodness. That’s FIVE nights in a row he’s slept through now. I can’t believe it yet! Making the most of it for sure. 🙂 x

  5. February 7, 2013 / 8:53 am

    It might be horrible being labelled a family in crisis (mine has been too) but it does mean that you and your kids are a priority for services, and I really hope that they kick in for you and give you and your kids all the help, support and therapy that they need xxx

    • February 7, 2013 / 9:44 am

      Exactly, I guess I partly wrote this to let others know that being labeled like that isn’t a bad thing. We’re getting all the support possible now and it’s starting to make a difference! That’s 5 nights in a row he’s slept through now. I genuinely can’t remember the last time that happened! x

  6. February 7, 2013 / 9:24 am

    I am so glad you are getting some help and I really hope that it does help and you move onto better things.

    • February 7, 2013 / 9:46 am

      thanks Alison. If my little man can just keep sleeping through at night, that makes such a huge difference. < £

  7. February 7, 2013 / 9:28 am

    I just wanted to send a hug, and I hope you all get the help and sleep you need. xxx

    • February 7, 2013 / 9:48 am

      Thanks Emma. That means a lot. It seems that now we’ve been labeled, all the help is suddenly available to us – so that’s the main thing. Five nights in a row he’s slept through now. I just can’t believe it! A full night’s sleep makes everything that much easier to cope with. xx

  8. February 7, 2013 / 9:36 am

    I spent a few minutes trying to think of the right thing to say, but they all sound cliched so I won’t bother.I hope it feels like you’ve got a team on your side instead of fighting it all on your – exhausted – own.
    xx

    • February 7, 2013 / 9:49 am

      Ellen, the fact that you’re here leaving a comment means so much – I wouldn’t care if you told me the best way to get him sleeping through was to have him wear a bin bag as jammies! lol :)That’s 5 nights in a row he’s slept through now, so things are getting that bit easier. And now we’ve been labeled, it seems that all the support is all being rushed into place. So that’s good. xx

  9. February 7, 2013 / 9:54 am

    I’m so pleased you are finally getting some help and you’re not on your own trying to cope anymore. Unless you’ve experienced sleep deprivation for long periods of time, you can’t comprehend how it leaks into every aspect of your life, physically and mentally and it makes it impossible to cope with everyday life, let alone anything that’s more stressful. I hope that now Max’s bedtime has moved, he carries on sleeping through, and you carry on getting the support you need. Sending you lots of Love xx

    • February 7, 2013 / 9:11 pm

      You’ve hit the nail on the head – the majority of people I was trying to explain about how difficult Max’s lack of sleep is for others, they don’t *know*. They didn’t realise until I actually broke down in front of them. Totally broke down.At least I didn’t get to the point of no return. I knew I couldn’t let myself as I couldn’t let my boys down.
      Having the support from others and Max’s wee run of sleeping through is helping immensely. Lets hope it continues! xx

  10. February 7, 2013 / 10:17 am

    oh huni *massive hugs* I’m glad you’ve had at least some sleep now and long may it continue.I really hope that the help you’re getting now will ease things.
    Try not to look too far into the future, things can change, you don’t know how things will turn out.

    Lots of love and hugs
    xxxxxxxx

    • February 7, 2013 / 9:12 pm

      Thanks sweety, I do try my best not to think of it, but in those moments where it all gets difficult, those thoughts seep in. I know you get where I’m coming from there.xxx

  11. February 7, 2013 / 10:44 am

    See I dont know what to say either so I think about what we would do in that life outside our computers & that’s coffee & cake.. lots cake but even so more, squeezy hugs!! I promise we will do these things one day soon! Lots of love x x x x x

    • February 7, 2013 / 9:13 pm

      I will hold you to that!! 🙂 *hugs* and love xxx

  12. […] was reading a very moving post by my friend Marylin who wrote this wonderful post Family In Crisis . Please go and take a look unfortunately Marylin’s situation will be resonate with so many […]

  13. February 7, 2013 / 4:02 pm

    well done you for standing up and being proud of your family, crisis or no crisis.It annoys me thought that it takes a meltdown to get the help you (by the sound of it) neede months ago.
    I know when my daughter was 4 1/2 wks old I phoned my GP and asked him to take her away, give her to social services, take her home to his wife as I could not cope and I had a cushion on my hands to shut her up with. I had been to GP and HV every day since she was born telling them something was wrong, she did not sleep, she vomited, but no they told me it was me making her like that. Turns out she was ill and 6 hrs away from dying had I not been so persistent that night.
    When my daughter was struggling with my grandson with his illnesses and problems she was told that social work are over subscribed and unless either or her kids are admitted twice to hospital with suspicious injuries then they could not help her ( which is why she moved in with us)
    I can appreciate wits end, and am not ashamed of what I nearly did.

    • February 7, 2013 / 9:16 pm

      I was on the waiting list for a social worker for ten months. As soon as I admitted to the school that I didn’t think I could cope much longer with Max, one suddenly became available.I can understand how difficult it is for the services that I’m now in receipt of have it. Their money has been taken from them (thank you ConDemed), and there are simply not enough people to help the hundreds if not thousands that need it.
      I’m so glad you were persistent with your daughter, and now you’re a gran!
      Lots of love, and thank you for leaving a message. x

  14. February 7, 2013 / 10:26 pm

    hope the sleep improvement continues – it makes such a difference. Really hope you get all the help and support you need.

    • February 15, 2013 / 10:22 pm

      Thank you so much for commenting. If he sleeps through tonight, that’ll be two full weeks he’s slept through! It’s wonderful. 🙂

  15. February 8, 2013 / 11:53 pm

    Oh I hope the sleep improves for you soon..it makes EVERYTHing so much harder. Bless you love glad you getting some help

    • February 15, 2013 / 10:23 pm

      Becky, sorry I took so long to reply – long weeks and children stealing my mac from me tend to do that it seems!If he sleeps through tonight, that’ll make it a full two weeks he’s slept till after 5am! We’re all feeling the full effects of a good run of sleeping through. 🙂

  16. February 9, 2013 / 1:30 pm

    I can totally relate to this Marilyn. I’m glad to hear that you’re now getting the help you need. I find I can do anything and cope with pretty much anything as long as I have had a good night’s sleep. My J has global developmental delay and autism. He used to be terrible at night – he’d go to sleep okay but get up every night for several hours. But he has really improved in the last couple of years (he’s now 10) so fingers crossed for you too. x

    • February 15, 2013 / 10:26 pm

      Ruth, thank you so much for sharing your experience with your J.You’re so right – you can conquer anything so long as you’ve had a good nights sleep.
      If Max sleeps through tonight, that’ll make it a full two weeks he’s been sleeping through – amazing and unheard of in the last two years! 🙂
      The great thing about this label is we’re now getting all the support we’ve desperately needed all along, so now that his sleeping seems to be on an even keel I’ll be getting help with figuring out how to calm his aggression which seems to be worsening as he gets older. That’ll be frustration for you, right?
      Thank you again for popping over here 🙂 x

  17. Nikkii
    February 17, 2013 / 11:04 am

    I’m so pleased to hear you’ve got some help, a social worker and sleep counsellor will make a huge difference (fingers crossed!) I see that the school have reduced Max’s provision. What has your social worker suggested? If you feel that they are not adequately meeting his needs (and yours) you can ask for a re-assessment. Your school has a specialist base but there are other options. You are not hindered by geography so don’t ever let that put you off looking around for the best place for your boy… be that in Perth or elsewhere, there are no obstacles… there are escorted taxis. Some wonderful work is done at these schools, and if you ever feel that provision at a main stream school is about bashing your beautiful square peg into a round hole – look elsewhere – but you have to ask for it. It’s not right that we have to push and ask and demand but I have a feeling that won’t be a problem for a mama bear like you 🙂

    • February 23, 2013 / 12:09 am

      Thanks sweety! So far he’s slept through every night but one since Feb 2nd!Regarding his hours… at the moment, he’s still in nursery, and is technically only legally meant to have up to 12.5 hours, so there’s not much I can do about it at the moment other than softly softly start to ask about his hours being increased again, though if I’m honest I’m doubtful that will happen. His aggression is too much for them to handle these days for long.
      However as soon as he hits primary school in August, things will have to change. There will be a transition stage into the autism base known here as the “P8 class”, and he’ll be in there the majority of the time.
      If the school starts to be tricky then, I will take it further as he’s got the right to a full time education as soon as he enrolls in school. If they’re unable to handle that the education board will have to get involved to find him a place (most likely Fairview) that can cope with all his behaviours. Personally I think he’d do better there, but it has to be the education board who places him there for us to be eligible to get taxis there and back. If I ask for him to be placed there, they will basically assume that I can get him there and back myself, which we know isn’t a possibility with not having a car (that’s a WHOLE other kettle of fish I’m disputing with DLA at the moment!).
      So basically, for now I’ll let them have their way, but if they aren’t able to have him in full time by say oct/nov this year, this mama bear will be roaring till she’s heard, don’t you worry! 😉
      *hugs*

      • Nikkii
        March 4, 2013 / 11:26 pm

        I’ve a friend who works at Fairview and she loves it there – they’ve got a wee class of nursery kids at the moment – about 4 or 5 of them. It really does sound like a wonderful place – if and when the time comes you roar 🙂

  18. February 22, 2013 / 9:57 am

    Thank you so much for all your kind, supportive words over on my blog. It does really warm a little place in my heart when someone shows they care. Now my broadband is up and running I’ve come to investigate this lovely lady who has been leaving them. It sounds like you have had an awful lot to deal with and I’m so glad you are finally getting the help you need. xxx Sending positive thoughts and much love. How is the sleeping through the night going? xxx

    • February 23, 2013 / 12:12 am

      You know, I don’t even know how I stumbled onto your blog, but I love it, and I seemed to pop up just as things started to get tricky for you. I’ve been there, so I can understand how hard it is! As you’ve found out, once you’re able to get settled in what is the start of your new life, things shift into place a lot more easily! I’m just so glad to hear things have gone pretty smoothly for you. :)Max has now slept through every night bar one (that would be the night I wrote this post – jinxed myself I think?!) since Feb 2nd. I couldn’t be happier with that! Not to mention feeling so much more like myself again!
      Sending positive thoughts and love right back at you! 🙂 xxx

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