I can’t celebrate

I should be celebrating.

I should be feeling proud and happy, that we have achieved so much in such a short space of time.

Both Ian and I attended Lachlan’s support plan review meeting yesterday, the meeting was very positive, everyone was amazed at how much progress Lachlan has made in the last year. Lachlan has made considerable progress in all areas except food and toilet training, don’t get me wrong, everyone who knows me will tell you how proud I am of Lachlan and how pleased I am with how far he has come, what I am really struggling with right now is how much all this progress has cost and I don’t mean in monetary terms.

I never realised until this last week how much was sacrificed to make it all happen and how much damage was being caused because all my time, energy and focus was consumed by the need to meet Lachlan’s targets and care for Lachlan’s needs.

I wonder if I am the only additional needs parent to feel overwhelmed by guilt, sadness and a sense of failure?

I feel I have let Lachlan’s two older siblings down by never having enough time to spend proper quality time with either of them. I thought as parents we were juggling all three children’s needs well, only I now see that both were only telling us and letting us see what we wanted to see, because both could see how much of our time Lachlan takes up and neither of the older two wanted to add to our stress. Both have hidden from us how they really felt, as a Mum this breaks my heart. I realised this week I didn’t even know the sort of things one of my children was interested in, what bands this child liked, the names of this child’s friends. Yet this child tells people who ask, that their Mum and Dad are the best and that they try really hard to be the best for them.

For four and a half years; all day every day has been about Lachlan, it has had to be. I just wish I had realised before now, sometimes it is only when you stop and reflect that things become clear, at the time I was too caught up in there and then. Sadly it has been the case that life for us all is bearable if all Lachlan’s needs are met and he is happy.

I know we have to find a better way. Problem is how?

We are lucky that we have support from our family who happily take the older two and give them 1-1 time, but what both older children crave is 1-1 time with me and their dad by the sounds of things preferably on their own. I don’t know how we can spread ourselves any thinner.

I met with our disability social worker this week, again I raised the issue of support for Lachlan during holidays and perhaps some time during an occasional weekend, this would give us time in theory when we know Lachlan is safe and we could focus on our older two, all we are going to be offered is the equivalent to two hours a week with a childminder and only during the Summer holidays. That works out at 16 hours over 8 weeks, that is the most social work can afford. I asked about SDS and direct payments, yes we can apply but apparently it is pointless as there are no child centred services in our region we could buy, plus apparently parents are expected to carry out the caring roll where it concerns children. The fact Lachlan can be in need of 2-1 care at times is apparently irrelevant.

I will find away to make things better for my older two, I guess we just learn to juggle better, there isn’t really any other option.

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I stand quietly

Sadly a very true reflection, of the side most don’t see.

Dirty, Naked & Happy

I stand quietly while you do somersaults on the bed as you aren’t being naughty, you are just trying to get your out of sync body under control.

I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.

I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.

I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.

I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer…

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A dream, that may soon come true……

I don’t know about other Autisim mums but ever since Autisim came to stay, I have dreamed and imagined the conversations I would love to have with Lachlan, I still have the conversations with Lachlan, I talk to him all day long, always leaving a pause for Lachlan to join in or reply if he wants too, but when I dream or imagine them, I see them being two way spontaneous conversations.

I mentioned in my last post that Lachlan had taken another little step forward.

I have been cautious about saying too much, I was worried this precious progress would slip away. Sometimes it can be a one off fluke, that Lachlan says something everyone can understand. I am delighted to say this little step has been developing and occurring more and more frequently, so much so it is becoming the new normal.

Lachlan has began filling in the blanks!

We noticed about a month ago Lachlans sentences were making much more sense, instead of…

“Daddy, ipad”, Lachlan now says “Daddy, I need my iPad”

instead of…

“need food”, Lachlan said tonight “it’s teatime, I need spaghetti”

when reading a book Lachlan would say “book corner” the other day Lachlan brought me a book and said “Mummy look, fireman Sam book”

Last night Lachlan was very unsettled, at midnight I gave in and took Lachlan to bed with me, Lachlan said, “goodnight mummy”

The one that puzzles me though, is no matter how hard I try, Lachlan won’t say, I love you, I have no doubt he can say it, I have head it three times in the last four and a three quarter years, I can get him to repeat almost anything, he is then very adept at applying new speech in the right situations, Lachlan is going through an An Angelina Balerina phase, it took a week but Lachlan can say both these words clearly now, which is helpful when he is shouting to have it on and no one other than me can make out what Lachlan wants. Don’t get me wrong, we all know how much Lachlan loves us all, he shows it with lovely hugs and that great big smile, it just puzzles me why he won’t say it.

I know we still have a very long road ahead and Lachlan is still very much behind his peers, but these little steps fill me with so much hope and joy, hope, that the conversations we long for and dream of will one day become a reality and joy for how far we have come from the early days where Lachlan’s only word was goodbye!