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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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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Autism

This is Autism, the hidden disability

I started this blog as I wanted to create a positive space to show how far we have come, don’t get me wrong my magical wee man has moved mountains to get to where we are today, in this post I am going to be 100% honest with the world about the complete living hell, living with Autism is not just for Lachlan but for his brother and sister and us his parents. This post has been bubbling and building in me for months, I am at breaking point now, exhausted, broken and deeply hurt, this is the result of the constant battle against ignorant people, a system that doesn’t work and an uncaring world.

Every thoughtless coment, wounds.

I now fully understand what other parents meant when they referred to Autism as the hidden disability.

Do you have any idea how much my little boy suffers?

Do you have any idea how much my bigger boy and little girl suffer?

Do you know how much strain my marriage has been put under?

Do you have any idea how much it hurts to feel powerless to make any of it better?

Can you stop and imagine for just one second how heartbroken you would feel if it was your family I was writing about?

So where to begin?

Lachlan will be 5 in 5 months time. Five a massive milestone for every child, the age at which in our country a child starts school.

Lachlan doesn’t look anything like an almost five year old, he is tiny, he wears age 3-4 clothing and even that is a recent development. I find myself these days having to remind myself he won’t be 3 or 4 on his next Birthday, he will be 5 and that he will start school in August.

Lachlan is going to attend an additional needs unit with a shared placement at our local amazing Catholic primary school, he will have 1:1 care full time. Either Lachlan’s dad or myself will always be available whilst Lachlan is at school should we be needed.

Lachlan’s world is a completely unrecognisable place in comparison to that of your avarage four and a half year old child or that avarage four and a half year old childs parents, let me tell you some more about it.

Lachlan can’t, won’t, doesn’t eat solid food, with the exception of baby rice cakes, jammy rings and baby puff crisps, everything else which is eaten must be mashed, there is no reason that Lachlan physicaly can’t eat food the same as any other child, the problem is sensory, the slightest lump that is too big, an unfamiliar smell, a new texture or taste will result in projectile vomiting of Exorcist proportions, someone new trying too hard to help Lachlan feed himself, a sickness bug, vaccines have all resulted in Lachlan literally starving himself, where no solid food passed his lips, for up to  a full month we served and binned three meals a day, we begged, the GP, OT, Peadiatrian and Health Visitor to help us, no one knew what to do the first time it happened in the end we had to go right back to formula milk as it was all we could get Lachlan to take, this has happened on three occasions in the last two years, then slowly, painstakingly we have worked back to the mashed food, taking months to get back to where we are now.

We have long since realised it is not Lachlan doesn’t want to eat like the rest of us, he does, he loves his food so long as it remains the same, just today Lachlan acctualy said to his Dad at lunchtime “taste” while Dad was eating a banana, as soon as the banana came too close Lachlan screamed and lashed out shouting “take it away”, to watch, it is like the banana was causing Lachlan actual physical pain, it was the same a few days ago when one of the older two were eating pizza, you can see it in Lachlan’s eyes how much he wants to try it,

can you imagine the torment this is for my little boy?

can you feel his frustration?

Lachlan can name every food, fruit, vegetable and sweetie, despite the limitations Lachlan’s allergies impose on us, it is not them which stop Lachlan enjoying all the foods other children love, he has never had sweets, or a bite of an apple, or ice cream, what prevents Lachlan from trying is Autism.

Lachlan is a clever bright little boy, but he can never be still, his body twitches, he seeks movement all the time, can you imagine trying to play, trying to follow an instruction, trying to learn or just watching your favourite programme while running back and forwards, or jumping up and down, or standing on your head, at the same time as flapping your arms, go on, try it,

give it ten minutes are you exhausted?

frustrated?

What happened in your program?

How far did you get with reading your book?

That is Lachlan’s life all day long, never still, not even for long when asleep, even then he gets no peace, again this for us is Autism.

We are lucky, you could call it lucky, that we have found a way in helping Lachlan be still, it involves a weighted vest and a weighted lap pad, altogether these weigh in at 4lb’s Lachlan’s body weight is only 27lb, I am no good at maths but I am sure that is almost 15% of his overall body weight, Lachlan can manage short periods of still whiles wearing the vest and can manage to watch CBEEBIES with vest and lap pad.

Can you imagine what it feels like to wear weight like this all day long?

The downside to the weighted therapy is that it is useless in the Summer months, even in a relatively cold Scotland,  Lachlan quite literally cooks in his special vest from mid June to September cutting it’s use down considerably.

Like a lot of children with autism Lachlan has no fear of danger,

no height is too high to climb,

electrical sockets and light switches make great toys to seek out and play with,

electrical cables are great for chewing,

despite the issues with food, Lachlan will put stones, glass, metal, plastic, basically anything hard in his mouth and try to chew it, he will try to put bubble mixture, shampoo and soap in his mouth.

Lachlan appears not to notice the taste.

Lachlan wants to do headstands 6ft off the ground, my curtains are trapeze ropes!

Lachlan loves to be outside, we have to keep all doors locked at all times, as once out in the garden Lachlan wants to escape and explore.

Outside poses 1000 times more dangers than inside, we had to have our locks changed and double handles fitted to the internal doors to stop Lachlan getting out, he doesn’t understand about pavements and roads or the danger cars pose, the whole world is a giant playgound to Lachlan.

By far the most dangerous behaviour Lachlan has ever demonstrated is his attraction to water, the compulsion that washes over him is almost hypnotic he will walk out to sea, not even stopping when out of his depth, big smile on his face, he wants to walk straight into rivers, puddles and swimming pools, no fear, oblivious to our calls to stop.

Can you imagine never being able to turn your back for a nano second?

Can you imagine how it feels as parents, to have this huge overwhelming responsibility?

Can you even begin to understand how if feels to know these things may always be a real risk and that Lachlan may never understand about danger or that the compulsions may be so strong, too strong for him to resist?

Do you see why not just anyone can look after Lachlan?

Do you understand why sometimes 1:1 is not enough?

This is Autism.

Lachlan will highly likely be starting school in nappies, we have made some progress in the area of toilet training not enough though. Lachlan without nappies is a nightmare right now, he shares another habit that many autistic children share, it is caused by sensory seeking, it is soul destroying, have you worked it out yet?

Yes, I am talking about smearing!

How would you cope with that?

You nip to the toilet, the phone rings, you are trying to spend time with your other children, in the middle of the night because you didn’t waken up when Lachlan did…….

Now try cleaning up the mess whilst properly watching Lachlan.

This is Autism.

Lachlan gets overwhelmed anytime someone comes to our home, this results in him promptly trying to send visitors away, even the ones he loves are greeted with a very sad sounding “goodbye “.

Visitors also result in stimming, (self stimulatory behaviour) from Lachlan this means, running, jumping, flapping and ends with Lachlan bouncing on his trampoline, the one that lives in the middle of the living room, I no longer view it as an odd piece of furniture, it just has to be there.

We get the same reaction when we go out, lots of stimming, harder to keep contained, if a bad day, going out can result in screaming, hands on ears, eyes screwed shut, head banging and dropping to the ground, refusing to move or uncurl. We often attract an audience, people stare, or worse imply we are bad parents ” with no control”, autism is in control.

Lachlan needs to chew, it helps him concentrate, it helps him process information. We have Chewies, strong rubber chews, Lachlan chews all day somedays, they save his arms, his clothes and help stop other dangerous items going in the mouth, they look awful though, kind of like smallish dog chews.

This is Autism.

Lachlan is a little unusual in terms of having a diagnosis of Autism as he is highly social, he loves and seeks the company of others and tries so hard to communicate with everyone, his speech is improving all the time, we have little chats occasionally, When we understand Lachlan beams, his smile could light up the room.

I see it in his eyes sometimes though the frustration and hurt because we don’t understand what Lachlan is trying to say, when it all gets too much Lachlan will smash his head off the nearest hard surface, with a sickening thud, he does this as it is believed banging ones head hard, resets all the sences that have gone off into overdrive,

Can you begin to understand how awful overload must feel that it drives you to smash your own head of the nearest hard surface?

This is Autism.

Lachlan needs 24 hours a day supervision, some nights Lachlan will sleep fairly well only needing directed back to his own bed two or three times.

Other nights Lachlan is up for hours, unable to settle, he wriggles and squirms as if in discomfort, unable to say what is wrong.

Lachlan frequently needs a full change in the middle of the night, sometimes our bed needs a full change at 3.00am too. Lachlan sleeps on a tiny toddler bed at the foot of our bed, there is nowhere else safe for him to sleep, a sleeping house is a dangerous playgound for a lad like Lachlan.

What if no one wakens up when Lachlan goes wandering?

It has happened a few times, one night we found Lachlan sitting in Hamish’s room in the dark eating lego, another night Lachlan climbed up and joined Alex in her loft bed, the most frightening occasion was the night we found Lachlan sitting on the landing playing with the power sockets, his hands dripping wet from turning on and playing with the sink taps, he could have given himself an electric shock, Lachlan could have died that night.

Stop and think for a second, my little boy could have died as a result of his dangerous sensory driven behaviour.

We now keep taps tuned off at the mains at night, have double handles on the bathroom door and have placed furniture in front of nearly every socket in the house. We tried Lachlan sharing a room with Hamish, we had to give up poor Hamish was falling asleep in school due to lack of sleep.

Could you go years without a full nights sleep?

I haven’t had a full nights sleep since before Lachlan was born.

Do you know how it feels to be too frightened to fall asleep because you have to keep your child safe?

This is Autism.

Lachlan has an amazing team of professionals who support him, for Lachlan this means hours of therapy sessions, every week.

We tried to help Lachlan join the activities other pre schoolers go to, the local groups happily accept Lachlan on to thier waiting lists but despite being on some lists two years he has never been offered a place, younger children have.

I am thankful Lachlan doesn’t know he is missing out.

This is Autism.

Lachlan lives at home with his older brother Hamish 13 and his older sister Alex 9, they never complain, not ever, they do suffer too though, they no longer bring friends home to play, they know that days out have to be planned round Lachlan, they have stopped asking for cinema trips to see the latest film, ten pin bowling, sleepovers, both children have had to grow up too fast, they both help out a lot with Lachlan, they love thier little brother, they are Lachlans best friends, they play with Lachlan for hours, helping Lachlan learn, they let Lachlan run on reins with them when we are out and about, they are young carers to their brother, they don’t get thier fair share of parental attention, we are spread too thinly.

As parents and a couple there is never time for just us, we attend endless meetings, we are Lachalns voice at these meetings, making sure his needs are cared for and met to the highest standards, there are sessions with the speech therapist, home visiting teacher, OT and we still have housework, meals too cook, we spend hours every week cooking meals for Lachlan that meet his dietary requirements and we have Hamish and Alex to care for too, as well as always watching Lachlan.

We have “targets” to work on. Even when not working with professionals we are always “modelling” our language, our behaviour, constantly trying to take steps forward.

It all takes it’s toll, the stress is immense, never getting a full nights sleep, I believe the stress levels experienced by additional needs parents have been found to be as high as thoes of soldiers working in war zones, for both Ian and I this has resulted in health problems and exhaustion, in the last three months my hair has been falling out at an alarming rate, my hormones are all over the place, the cause?

stress.

I study through open learning, I somehow find time to squeeze it in, my hope and aim is to get a job locally during term time once Lachlan is settled in school. I want to build a better life for my family.

Looking at Lachlan he looks just like any other little boy, you can’t see Autism. Lachlan is a wonderful wee lad who is doing his best, thanks to the support of Lachlan’s proffesionals and the determination of Lachlan’s family and extended family, I know Lachlan will always be the best he can be.

This is our families lives with Autism.

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Autism, Our lives and Autism

A very Merry Christmas

For weeks now I have been daring to hope that this years Christmas and festive season would be a happy one, full of good memories, love and laughter, instead of the stress and heartbreak of the previous two. I have been silently praying that autism wasn’t going to get in the way or spoil things, all of us over the last year have invested so much time, energy, patience and love in helping Lachlan to learn to cope and live in our world, had we come far enough though?

Christmas is sensory nightmare for children with autism and sensory processing disorder; for a month, routine goes out the window, both at home and in nursery / school as all the preparation for Christmas begins, there are rehearsals for concerts, lights and decorations everywhere, sights and smells that can only be found at Christmas, there are the concerts of siblings to attend, friends and relatives you haven’t seen since last Christmas suddenly reappear, even just the excitement of others can be all too much for our sensitive little ones.

This year we decided that as far as possible we were going to join in the festivities as a family, all of us together, that meant Lachlan went to his sisters school fare, the school concert, had a trip to meet Santa, took part in his Playgroup’s nativity play, went to a Christmas party, attended church on Christmas Eve, got up with his siblings on Christmas morning and as much as possible joined in Christmas Day.

I bought Lachlan a little playmobil 123 nativity set and Santa and sleigh set, we looked at Christmas themed books, reading the stories, singing Carols and we all played with Lachlan’s Christmas toys with him, demonstrating and role playing, we bought Lachlan a beautiful wooden Christmas tree advent calendar where each day you added a bauble to the tree on the lead up to Christmas. We all wanted to try and help Lachlan make sense of it all.
We had no expectations of Lachlan, if he wanted to blank out Christmas then that was fine with us, we just wanted to give him the opportunity to join in as much or as little as he was happy with.

The school fare was all too much, the rest I am delighted to say were all a success, admittedly some more so than others, Lachlan enjoyed both the school concert and church service but was rather noisy through both, he did brilliantly on his visit to Santa even managing to tell Santa that he wanted a Fire Engine for Christmas and Christmas Day was more magical than I could ever have hoped for.

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On Christmas morning we all got up at 10.00am, Lachlan stopped dead on the stairs when his eyes caught site of all the presents on the couch below, his face full of wonder, a tiny little voice whispered the word “presents”.
I always try to get the children to open up one present at a time and they take it in turns, we let Hamish and Alex begin and encouraged Lachlan to take his turn, he was not too sure to begin with and on Christmas morning only a few presents were opened by Lachlan, partly because he got as far as opening his Fire Engine and Fire Station and then played happily with them for the next couple of hours totally engrossed with his new toys.

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We were having family over for Christmas dinner, for Lachlan this was going to be the next big challenge of the day, yes he knew all those coming very well but to have them all over all at once was something we had never done before. For Lachlan this was going to be an invasion of his space of epic proportions!

Lachlan took it all in his stride, he did cling a little when our guests first arrived but soon was back to playing happily with his new toys, we had decided as we were not eating at Lachlan’s usual tea time that we would eat and leave Lachlan to enjoy his toys in peace. There was a magical moment after we sat down to eat when Lachlan appeared in the kitchen, he took up a chair beside Alex and sat there happily eating a bowl of rice cakes and crisps while we ate Christmas dinner, it made me so happy that Lachlan chose to join us.

After our meal it was time to exchange gifts, Lachlan took the lead from everyone else and joined in opening all his presents, it was lovely to see his face light up when he found in each parcel a gift he liked, I was touched when Lachlan thanked everyone for his gifts too, understanding who his presents had come from, there was none of the fear or upset that presents had brought last year or the year before, all presents were opened on Christmas Day unlike last year where we finally gave in and opened gifts for Lachlan at the end of January.

At the end of the evening Lachlan seemed truly disappointed when everyone went home. Lachlan happily played on with is toys until becoming sleepy around 11.00pm, when he fell asleep cuddled into me, a happy contented little boy.

For us all I think this Christmas will always be held in our hearts and memories as Lachlan’s first Christmas.

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