Autism, Our lives and Autism

Starting school, learning to let go…..

In August Lachlan started school.

The first six weeks were what could only be described as a “white knuckled roller coaster ride”, nothing prepared me for the emotional impact that was to hit me full force around day two or three.

We always knew Lachlan starting school was going to be very different.

I knew we would have to take a giant leap of faith, I knew we were going to have a whole new team of professionals to work with, I knew I was going to find it incredibly hard to trust all these new people with my special little man.
I thought I was doing well in accepting that life with Lachlan was going to be different.

I found it so hard taking Lachlan to school every morning and picking him up at the end of the day, I had so much I felt I needed to tell the staff, then so many questions I wanted to ask them about how Lachlan had got on, there wasn’t enough hours in the day!

Lachlan has a home school diary, it helps bridge the gap.  I felt pushed out. In a way I felt I wasn’t needed in the same way any more.

I wanted to chat with the other primary one mums in the playground but I didn’t know what to say, so I didn’t say anything other than a passing “hello”.

All of a sudden all the differences between Lachlan and his peers were there again, I would notice the other children come running out at the end of the day full of tales of their new adventures with thier new friends and then Lachlan would appear with his additional needs assistant, always delighted to see us but never able to tell us anything, none of the other children would come over to speak to Lachlan and it made me feel so sad, not just for me but for him too.

Autisim really is like living in a world you just don’t really belong in.

Lachlan has a split placement this means he attends a special needs unit in the mornings and then goes across the corridor to mainstream P1 for the afternoons.

Lachlan had an enhanced transition, which meant endless meetings over the last year, despite all the effort that went into an anticipated smooth transition so much was lost in translation, we had to deal with unforeseen staff changes and some failing to understand fully just how great some of Lachlan’s challenges were and what they meant for Lachlan going to school.

By half term I felt I was battling constantly with everyone, I was exhausted and miserable.

I have some great friends who, when I need it, listen and don’t just tell me what I want to hear.

I was gently advised by a friend who teaches children like Lachlan that “I had to let go,” for my sake, for Lachlan’s sake and the sake of future relationships with all thoes who work with Lachlan.

That was not easy advice to hear but it was true, I really had to let go.

Lachlan was happy, settled and making progress at school in both provisions, I could see that, everyone could, things weren’t perfect, but when is life ever?

So I took a very deep breath and let go.

I put my trust and faith in the wonderful ladies who are all now part of Lachlan’s life, I took a reluctant step back and did one of the hardest things I have ever had to do, I let them all get on with working with Lachlan.

I think it is fair to say that was a turning point for us all.

I have come to respect if anyone working with Lachlan has any worries or questions, they will ask.

Lachlan is thriving, the progress he is making is amazing, school for Lachlan is not just about learning academically, he is learning life skills, I noticed just the other day that Lachlan now puts his hand over his mouth when he coughs, he has developed beautiful manners, always using “please” and “thank you”, Lachlan now asks for help, the first time he asked me “help me build a house please mummy?” I was stunned and delighted.

Last week there was a note in Lachlan’s diary to say he had been playing with some of the other children.  The improvement in his speech and language development has been phenomenal, my dream of a propper sustained conversation will one day be reality, everyday Lachlan takes a little step closer to it.

I have noticed how much thoes working with Lachlan care for him, how well they have gotten to know him and I was touched when Lachlan was off ill recently to hear how much he was missed by the staff and children at school. Apparently school was just too quiet without Lachlan.

In the last month both Lachlan’s provisions have been preparing for Christmas, this has meant Lachlan went on an all day school trip to see Christmas decorations and Santa, involving eating lunch in a busy restaurant and traveling by bus, Lachlan took part in his schools nativity play joining in singing with his class and Lachlan enjoyed attending the School Christmas party, when Santa arrived Lachlan shouted out “Christmas is open!”  I was deeply touched last week when Lachlan brought home all the lovely Christmas gifts he had made at school, there was a beautiful card, candle holders, a calendar and a Christmas cake! Lachlan and I opened them all together and both Lachlan and I were bursting with pride when Lachlan recognised the items as things he had made by putting my hand on them and saying “Lachlan’s”.

Lachlan starting school hasn’t been an easy journey but we got there in the end.

 

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Autism

Will life always be this way?

I try to be positive, I try to focus on the progress.

It is hard sometimes.

I feel alone.

It is the Summer holidays, the days are passing, we are surviving.

The holidays haven’t been a holiday really, we got away for a week which was great, for a week we had fun together as a family and some of the tensions eased.

We visit the same area each year, the Cairngorm National Park, it is beautiful there, we can all be ourselves, there are loads of places to go and things to do that all three children can enjoy, as a Mum nothing makes me happier than seeing my children happy and relaxed.  None of us wanted to come home, my eldest two both begged us not to go home.

I feel sad that home doesn’t feel a happy place for my family.

Our week away feels like a lifetime ago.  We have only been home two weeks.

It has been a case of back home and back to to the frontline.

We have spent our time juggling the needs of all three children with appointments, phone calls and meetings, couple this with the loss of most of Lachlan’s support services and very little respite I think it is fair to say we are all including Lachlan feeling the strain. This is not how I hoped we would spend the Summer.

It is two weeks on Tuesday until Lachlan starts school and due to unforeseen circumstances the plans that were in place are now a mess.  We have a meeting with education this week to look at this and also how education are failing our older two children too.

I feel so much of our time is taken up fighting with diffrent departments, education, social work, health; the sad thing is we are not asking for much, is it too much to ask that your children’s individual needs are recognised and supported to allow them to reach their full potential?

I fear we are trapped endlessly going round in circles.

It all comes down to money, lack of resources, vacant staff posts, staff on long term sick leave, a childs needs not being great enough or the fact despite a child having significant needs, because they have no diagnosis their needs can be ignored.

Oh and I mustn’t  forget that blaming the parents for childrens failings is a favourite of proffesionals accross the board!

I have recently began to wonder if this is it?

Is this how it is going to be?

When my family was touched by Autisim, after the initial shock, I expected things to improve, for life to settle down, but the reality is we just go from one battle to the next.  Nothing is getting easier, the challenges just change.

We live in a region where there are no outside agency’s or charities that offer services, the services there are, are ridiculously overstretched.

Lachlan has made great progress in the last year so much so we are no longer using his special buggy, it hit me yeasterday that the special buggy ment people realised Lachlan was diffrent, this made people more accepting and tolerant, now when he screeches in the supermarket or just lies down and refuses to move in the middle of a shop Isle the dirty looks and smart comments from on lookers have returned, I felt so proud when we were on holiday and we coped without the buggy, do you see where I am coming from? It is one step forward, two back and it is unrelenting.

It is the same with inclusion, I think people who know us understand or are begining too and then my daughter comes home upset and angry because some local kids are calling her little brother a psyco again.

We are seen by many as scroungers because our main income comes from benefits, it is 3.30am and right now I am sitting up caring for Lachlan, we care for Lachlan 24/7, 365 days a year, we have no respite.  I haven’t had a full nights sleep in over five years, my little boy needs help to do everything and constant care to keep him safe, if he were in local authority care it would cost hundreds of thousands of pounds a year to care for him and meet his needs.  I can assure you the income we have we just scrape by on.

I keep hearing about all the positive changes in legislation, about each region in Scotland having a Stratagey For Autisim, about the needs of carers and Young carers being better understood and supported, you see Autisim featuring in TV shows in a positive way more and more frequently, yet none of this is making our lives or the lives of many other Autisim affected family’s I know any better.

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It’s all about me!

I could have written this myself. Miriam is an amazing mummy, I am proud to call a friend. Vx

faithmummy

Being positive is not being in denial. Posting highlights of your day on social media is not being fake. Trying to find hope in hopelessness is not wrong.

Attitude means everything.

And recently I have had to give myself a good shake.

Living with the daily challenges of two children who struggle can really get me down. Some days, more than I would like to publicly admit, I cry. I worry about the future. I struggle through everyday, often silently. And I feel alone.

But then I realised something important. I came to realise it was actually all about me!

I could look at things negative. Or I could try to see a positive.

imageFor example I could have wallowed in upset at the thought my daughter was so anxious she never made it to her first ever school trip. I could have become angry that she seemed to be…

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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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I stand quietly

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

Dirty, Naked & Happy

If you came to see what was here before, it has all been retired.

If you are here because your child is autistic, good luck on your parenting journey, do your best, enjoy it.  You are no different to any other parent whatever anyone says.

You are not in Holland or Italy for that matter (unless you literally are), you are travelling your own unique path with your own unique family, go you.

Your kid is autistic, that’s their story, sometimes it’s hard to distinguish that but you must.  It can take time, it did for me, but ultimately that understanding will set you free to be the best parent you can be.  Maybe this makes no sense to you right now, I think eventually it will, I hope so.

Be the wind beneath their wings, don’t ride their coat tails.

With love x

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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!

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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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