Autism

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, to try harder, there isn’t really any other option.

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Autism

All change……

On the 12th of February we moved to a beautiful new home, we are still in the same town and the kids still attend the same schools.

I never realised how stressed our old home was making me or just how unhappy I was until now. Moving house is meant to be one of the most stressful things you can never do, yet for the first time in a very long time I feel at peace, for me it is like a strange sense of calm has washed over me.

Although when I think about it I can still see the awful images of Lachlan walking out the door and not being able to reach him and a drowning child, for now the nightmares I was plagued with have stopped. The nearest river is a good 10 minute walk away.

Moving was very, very stressful, Lachlan managed to escape once and nearly got run over!

I shook for nearly an hour after, it was no ones fault, the door was left open, everyone thought someone else was watching Lachlan. I never held my boy so tight, it was strange though, I took Lachlan inside, I sat him on my knee, looked him in the eye and told him never to go out on his own again, I told him he could have been hurt, I then fell apart and needed my Mum to put me back together, a little while later though Lachlan came up to me looked right at me and said ” I am sorry Mummy”. Both my Mum and I were speechless, I honestly think Lachlan understood, it just took him a while to process it all and find the right words.

It really hit me then, just how huge the responsibility of keeping Lachlan safe is.

Someone once said to me God never gives someone more than they can handle, I am not sure I believe this, I have been really struggling with my faith for a while now. The responsibility that comes with caring for Lachlan is immense and incalculable. The fear I felt that day will stay with me for ever.

Yesterday our locks were changed so that a key is needed to open the doors on both sides, a much needed safety measure. We are waiting on other safety adaptations keypads for the toilets and lounge and a permanent 3/4 height barrier with lockable door to partician off the open plan kitchen.
The keypads for the toilets are to stop Lachlan playing with the taps and toilets and the one for the lounge is so we can keep Lachlan downstairs.

Lachlan loves the new house, Lachlan loves his bedroom, Lachlan loves the space, Lachlan took the move pretty much in his stride, he has really impressed me with just how well he has coped with all the upheaval. After Lachlan’s first visit to the house, he was asked what he thought, again there was a delay, his answer was just one perfect word,

“Amazing!”

Lachlan’s bedroom is opposite ours, so far he has managed one night all night in his own bed, we have put a gate across the hall after he went wandering down the stairs in the middle of the night, so now he can only wander to our room, some nights he is managing until 6.00am others he is in with us by midnight! I have to admit that one night I actually missed Lachlan, which is complete madness considering I have waited nearly five years for Lachlan to do a full night in his own bed!

Lachlan wants lights on all night, our old home was lit up like Blackpool illuminations thanks to two lampposts at both the front and back of the house, we have invested in night lights and a nursery lamp, it is early days though and perhaps Lachlan has inherited my fear of the dark.

I still remember being his age and being terrified of the night.

We are still trying to organise the new house, I think it will take months to get everything just so, but for now we are getting there.

Lachlan’s speech is taking another little leap which is magical, today at lunchtime we were hit with a blizzard, Lachlan turned to me and said “Look Mummy it is snowing,” “cold”, “frozen” these little steps mean so much more than most will ever understand, it is not just about the words for me it is the joy that comes from knowing Lachlan wants to share something with me, two years ago Lachlan only had two words, we now have short often meaningful sentences which are even in context.

Another favourite with Lachlan at the moment is to ask for “music to dance”, Lachlan sings along sometimes, though I have realised I need to watch the lyrics of what I am listening too as on Sunday he was singing along to Meatloaf and came out with “sex, n, drums and Rock and roll!” The wee monkey saw my reaction and repeated it over and over between giggles!

Another battle we have finally won is that Lachlan will now wear something other than boots on his feet, he has slippers and gym shoes and seems to quite like them.

It is the little things……

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Autism, Our lives and Autism

Swimming In Treacle

It hasn’t been a bad week here, it hasn’t been a great week either.

I have the “swimming in treacle” feeling.

There is so much uncertainty so many changes looming, it all feels overwhelming.

We might be moving to a bigger house, hopefully we will know for definite in the next few weeks, whilst that would be a positive change in the long run, in the short term it would mean a lot of upset and a very unsettled period not just for Lachlan but for us all.  It is stressful enough for children who can understand the concept of moving house, it must be a 100 times worse for thoes who don’t.

Lachlan seems to be having a stand still on the progress front for now, stand still’s leave me feeling uneasy, there is a constant fear that all the progress will slip away, regression can happen, the fear of it is always there at the back of my mind.

We have a review / transition to school meeting in just over a weeks time, after the disaster that was our last review meeting, I am not looking forward to this one, my wee man is not ready for school and I am not ready to let him go.  The gap between Lachlan’s stage of development and that of his peer group is huge, all he really has in common with thoes children is his age.

All the professionals think school is the way forward.

I often wonder if one day Lachlan will catch up?

I look at the autistic children of others and wonder when Lachlan reaches the same age will he be like them?

Will we find ourselves facing the same challenges?

How do we know what the right choices are?

I look at the town and region we live in and there are next to no resources at all specifically for children or adults with Autism, in the future there maybe but what will it mean for my family if there are not?

Autism has made me very unsure of the future and where we are going. Already it has altered our path considerably.

 

 

 

 

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