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

The Road To Mainstream Nursery Part Two

After the introduction of the weighted vest, life for Lachlan slowly improved, we were to learn that we had to overcome the sensory issues before we could move forward.

As a parent I was to initially fight and question the need for sensory chews and deep pressure massage, perhaps I was still in denial, I just didn’t want my wee man to stand out from the crowd.

Our home visiting teacher gently pushed the issue of chewies, she was right Lachlan needs to chew, the first silicone pendant chewies I bought were destroyed in hours, our OT produced some awful looking ones which were like coiled phone cable in vivid colours, I hated them even more than the silicone pendant ones, but they worked and seem to last, I hated the look though, especially as Lachlan likes to chew on one side with chewie just hanging there.

I hated going out and about and folks staring, I felt we were often stared at because Lachlan looks too big for his buggy, the chewies in my mind only made this worse.  In time I realised though that it is other folks who have the problem, I accepted that if it helped Lachlan live in our world and eased his suffering then so be it, I could live with chewies.

After Easter Lachlan had 1:1 support at playgroup so I no longer had to stay, this was great on one front as I got a break but not so great as I had no idea what Lachlan had been up to and if he was happy, Lachlan was not to happy at me leaving initially either and it hurt to leave him crying, even knowing that staff would phone if he didn’t settle after 5 minutes. We continued our battle for 1:1 funding for initially three sessions from the August, I felt a bit disappointed that was all we were likely to get as Lachlan would be three therefore entitled to a funded place which meant 5 afternoons in theory but without 1:1 that couldn’t happen.

Lachlan started three afternoons a week in August and quickly settled and was happy to be left, so much so that come October he upped his sessions to four afternoons and then after Christmas the full five.  The funding was finally resolved in November something that I am still annoyed about, no parent should be left wondering if her child can go to nursery the following week as the initial funding had ran out.

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