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

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

Is a carers life a luxury?

It was put to me yesterday that to be at home every weekend and to not work at all is a luxury.

I know many other additional needs parents receive comments like this too.

The truth is I have a job, my full time twenty four hours a day, seven days a week, 365 days a year job is firstly being a wife and mum to my husband and all three of my children and secondly I am Lachlan’s carer.

Additional needs parents do a job no one willingly applies for. A job they never signed up for. A job they wouldn’t wish on anyone else.

So when does a parent become a carer?

A difficult question to answer, the official definition is:

“A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.

Anyone can become a carer; carers come from all walks of life, all cultures and can be of any age. Many feel they are doing what anyone else would in the same situation; looking after their mother, son, or best friend and just getting on with it.

Carers don’t choose to become carers: it just happens and they have to get on with it; if they did not do it, who would and what would happen to the person they care for?”

In terms of financial support the government view a carer as someone who cares for another at least 35 hours a week and earns less than £102 a week and does not study more than 21 hours a week. The person they care for must be in receipt of one of a list of disability benefits at a certain minimum rate. For a child to qualify for a disability benefit they must need more looking after than a child of the same age who doesn’t have a disability.

Here is piece of information most people don’t realise, carers allowance is currently £61.35 a week. Jobseeker’s Allowance is currently £72.40.

In my case I guess I became a carer the day Lachlan was born although only officially when Lachlan was two and a half.

Lachlan is now four and a half.

As a mother and carer to a little boy with autism and developmental delay, I fulfil many roles, I am a speech therapist, play specialist, OT, dietician, friend, teacher, protector and advocate, kind of all rolled into one.

I am going to tell you about a typical week day and weekend day with Lachlan.

Weekday:

Lachlan gets up at 7.45am, it is then nappy change, breakfast and along to nursery for 8.30am. Lachlan has 1:1 care at nursery to help him participate and to keep him safe. While Lachlan is at nursery I can spend time making phone calls, sometimes in meetings with professionals, catching up on the never ending house work and washing, or cooking Lachlan’s meals that meet his dietary requirements. Or I could be catching up on my studies or sometimes catching up on sleep! Most definitely every morning a trip to the toilet in peace!

I pick Lachlan up at 11.30am, we come home, I spend an hour battling with Lachlan to get lunch into him.

12.30pm I will grab myself some lunch while entertaining Lachlan with an activity at the table.

1.00pm Change and toilet Lachlan, if I am lucky it will just be a nappy change and not a full set of clothes change.

1.30pm Home visiting teacher, Speech therapist, OT arrive or we catch up with Lachlan’s friend.

3.30pm We collect Alex from school, come home, change nappy and or clothes and have a snack.

4.00pm Lachlan usually happily plays with his toys, iPad or watches TV.  Hamish comes home.

5.00pm The tea time battle begins, if I am lucky our home cooked offering will be eaten on a bad day it will all go in the bin.

6.00pm Change / toilet, get tea / feed everyone else. While keeping a close eye on Lachlan, did you know how much fun it is to cover yourself and everything in sight in poo?

7.00pm Clean up after tea and after Lachlan, usually another nappy change.

8.00pm bath time, you can’t leave Lachlan for a nano second.

8.30pm milk and melatonin.

9.30pm Lachlan asleep!

11.00pm Lachlan to bed. We go to bed.

1.00am Lachlan up, settled in our bed put back in own bed.

3.00am Lachlan up, full change needed everything is soaking, if we are lucky that doesn’t include our bed.

5.00am Lachlan finally goes back to sleep!

Weekend:

The same as through the week except there is no nursery or visiting professionals, from the minute Lachlan gets up it is non stop until bed time and beyond. To go out anywhere we need an extra pair of hands and a lot of time spent planning.

Did I mention I have a husband and two older children to add into the mix?

If you have read any of my other blog posts you will know Lachlan is a live wire, he is so full of energy it is non stop all day everyday. Lachlan has no safety awareness and loves to pursue climbing and other dangerous stunts, he has a frightening fascination with water and loves to chew things especially electric cables, in many ways he has a developmental age of around 2 years, which is 2.5 years behind. He really does need 1:1 and sometimes 1:2 supervision every waking second of every day.

At the moment the only breaks we get if you can call them breaks are when Lachlan is at nursery, we rely heavily on grand parents to help out when we need to be somewhere without Lachlan, usually appointments for the other children or meetings for Lachlan, in the last 3 years Ian and I have been out alone together for meals or the cinema less than five times! From the day Lachlan was born I have never had a full nights unbroken sleep, not once.
If I get time my hair gets cut once a year and I live in jeans and easy wash and dry tops, I can’t remember the last time I got dressed up, I am not even sure I own anything dressy anymore.

I tried to find a child minder or child care provider locally to look after Lachlan as I had hoped to get a job once Lachlan went to nursery and I even took steps towards setting up my own business but apart from one childminder no one was interested in the job, the childminder wanted three times her normal rate though as she felt that if looking after Lachlan she would be unable to look after other children at the same time. I had to give up my business idea and no job I am qualified for would pay enough to pay childcare.

You know though, at the end of the day none of it really matters, all that matters is that all three of my children are happy, thriving, well cared for and loved.

As far as I am concerned I may not have paid employment but I do a job far more important, I never signed up to be an additional needs parent but I am and it is the hardest of jobs out of any occupation, it is also the most rewarding, every little step Lachlan takes it is because we all try so hard to help him be the best he can be. I am proud of all we have achieved.

I don’t think it is a luxury that I am at home every weekend and don’t in some people’s eyes work at all, perhaps those so quick to judge would like to come and wear my shoes for a day?

Is a carers life a luxury?

I will let you decide.

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Autism, Our lives and Autism

Jingle Bells, How far we have come….

Since our holiday in October Lachlan has been coming on in leaps and bounds, I suspect the long-awaited arrival of a bigger weighted vest may be partly responsible.

Speech is coming along most impressively, it is still miles behind other children of the same age but miles ahead of where we started from.  We were in our local tesco last week and Lachlan had great fun shouting out all the names of all the fruit and veg, the other customers must have thought us bizarre parents as we cheered and clapped with every word from the wee man.  We now get sentences more frequently, “biscuit on plate”, “penguin swimming in water”, more amazingly our little conversations are becoming a more regular occurrence,

Lachlan “need iPad”

Mum “why?”

Lachlan “need iplayer”

Mum “what are you going to watch?”

Lachlan “teletubbies”

and

Lachlan “Go outside”

Mum “why?”

Lachlan “moon and stars”

Mum “come on then”

Lachlan “no moon”

Mum “where has the moon gone”

Lachlan “cloudy, clouds”

and

Mum “what did you do at playgroup today?”

Lachlan “build a house”

Mum “what else did you do?”

Lachlan “went outside”

Mum “did you paint today?”

Lachlan “yes” (answered with paint in hair)

and

Lachlan “need a pumpkin”

Mum “why do you need a pumpkin?”

Lachlan “For Halloween”

Mum “Halloween is finished”

Lachlan in the cutest scary voice you ever heard, “Halloween is spoooooooooooooky”

As we head towards Christmas I am nervously excited as this year Lachlan appears to be throwing himself into the festivities quite whole heartedly. He is loving seeing the Christmas trees that are going up around our town, the lights, he is even telling everyone “Merry Christmas” and “Santa bring presents”. It is going to be a very long month with lots of high voltage sensory exposure still to come, the sounds, sights, smells and excitement.  I am quietly confident though that this year Lachlan will take it all in his stride.  At playgroup Lachlan has been learning Jingle Bells, we were at our doctors surgery last week and there is my wee man in the middle of the toys singing from the souls of his feet at full volume, huge grin on his little face “Jingle bells, jingle bells, jingle all the way”, “fun open sleigh”, “Jingle bells, jingle bells, jingle all the way!” Again onlookers must have thought us mad as Ian, Alex and I  cheered and clapped, instead of telling Lachlan to keep the noise down! It just shows how far Lachlan has come.

It is two years ago yesterday since the day we took Lachlan for that early years assessment where we finally learned the names for all the quirks and struggles with Lachlan; although in our case I now recognise that autism was there from the second Lachlan was born and Lachlan was always behind developmentaly, I still look back on that day as the day autism came to stay.

 

For me despite everything this world has thrown at me, it was one of the hardest days I ever lived through.

 

I remember back to that assessment day and the only comments I made to all the professionals there that day was,

“can we now have speech therapy?”

“just tell me how to make Lachlan happy, please tell me how to stop his pain and suffering,”

If you read my earlier posts, you will see how awful life was for Lachlan and hopeless and helpless those early days were.

I didn’t appreciate then how big challenges to come were going to be, how could I?

That Christmas was the worst Christmas, Lachlan screamed, shook, head banged, teeth ground, was physically sick or just shut down and slept through all our attempts to engage him in any festivities, the sensory overload really was so severe. It was so hard for us all relatives and friends to understand when every present resulted in screaming and shaking and that was while they still had the wrapping paper on never mind trying to open them, in the end we opened them and most were put away for another day, some never to be played with. I still have the photo some would find cute of Lachlan asleep in Annabelle my nan’s dogs bed, taken on Christmas day 2012, Lachlan climbed in and couldn’t be coaxed out, he slept the full day despite having had a good night.

Two years on and we have as a family and as part of a wider team have battled with Lachlan to help Lachlan be the best he can be, we have learnt in depth about autism, communication and communicating, we have learned and understand the sensory world and all the implications it can have for Lachlan, we have learned to look at everything again with fresh eyes, we have learned to listen without using our ears, we have learned to say “why not?” instead of asking “why?”, and we have learned to bend to accommodate all sorts of weird and wacky suggestions, some of which did make the difference; as a family we are no longer afraid of autism and accept it has come to stay and we can’t change that, in some ways I wouldn’t want to change it, as autism is a part of Lachlan it is part of the amazing little person he is.

The question I ask myself all the time,

“Is Lachlan happy?”

The answer,

“Lachlan is the happiest little lad I have ever had the honour to know and I am so full of pride when I tell people he is my son, everyday with Lachlan is a new adventure filled with smiles and laughter and not a single moment is ever dull or boring.”

 

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Lachlan is now 4 years old and in his final year of Early Years Education (formally known as Pre-school year) we are now six weeks into the first term.

Lachlan is happy, settled and just loves his playgroup this is his second full year there, he loves the ladies who teach, support and care for him and he loves the other children.

I am now glad we didn’t pursue a place in an additional needs setting for Lachlan, I think the other children have learned as much from Lachlan as he has learned from them, as a parent I have been deeply touched to watch Lachlan develop relationships with the other children, who are yet to young to understand why Lachlan is different, sometimes they join in Lachlan’s games and they watch out for him too.

In the first post I wrote about Lachlan starting playgroup,

The road to mainstream Pre School…

There were so many obstacles, in the beginning it felt like too many to possibly overcome.

In all honesty Lachlan and I were terrified. After Lachlan’s first afternoon my heart broke harder than it had ever broken before, I realised that day just how different and behind his peers Lachlan was and I had no idea how to make playgroup work.

I will never forget that day, looking back on it though, it shows just how far Lachlan has come, it proves what seemed impossible can be possible.

Miracles do happen….

Lachlan can talk, in short sentences, everyone who works with Lachaln has fought so hard to get Lachlan speaking one of my biggest fears was how Lachlan would communicate that he was hurt or something was wrong at playgroup, I am amazed to say Lachlan’s solution is to say “I bumped,” sometimes while holding the “bumped” arm, leg or head.

“I bumped,” we have worked out also covers, that something hurts, this has solved a lot of frustration on both sides as now when Lachlan is becoming unwell he lets us know, something is bothering him.

The down side to “I bumped,” is when Ian or I give Lachlan a row the monkey runs to the other and you guessed it with a quivering lip says, “I bumped!”

Lachlan can say in words everything he wants these days, the frustrated “Un’s” have almost gone completely, he is beginning to ask for things too, his favourites at the moment is to say, “I need a biscuit, crisps, cake”, “I need juice”, “bum change”, “build a house, lego”, “go out”, “need a kiss” and my favourite “me and my mummy”.

Lachlan hardly ever cries, hardly ever covers his ears, very rarely headbangs and at playgroup instead of hiding from others he actively looks for interaction from the other children and staff, he has learned to sit reasonably well at snack time and latterly sits very well at story time, especially if a “Meg and Mog” book or “Maisie Mouse”, I honestly would not have believed it possible in such a relatively short space of time that Lachlan could come on so much had I not been a part of the journey.

Don’t get me wrong, there are still many battles to be won, currently everyone working with Lachlan is trying to get him to drink from a cup without a lid, we know he can do it as we have caught Lachlan swigging from abandoned glasses of juice at home and drinking the bath water from his bath toys, but he just won’t do it from a cup!

Safety is a huge issue, Lachlan has 1:1 support at playgroup full-time, unfortunately for all his care givers Lachlan’s climbing ability is outstanding, he has no concept of height, loves to jump from high surfaces, hang’s upside down at every opportunity and loves doing headstands, I have yet to try it but Lachlan really is convinced certain programmes on TV just have to be watched upsides down! Outdoor dangers are another huge concern, as Lachlan has no sense of danger, he still wants to walk straight into the river or out into the road. We have a buggy which is now rarely used and if out on foot we always put a harness with a line on it to act as an extra pair of hands.

Toilet training is a disaster, did you know how much fun it is to be able to make ones own puddles to play in??

Eating is still hard going, though after a huge regression due to illness, Lachlan is now back to making slow progress, he will eat anything provided it is mashed, his dairy, egg, gluten and soya free diet continue, Lachlan’s favourites are “Hairy Bikers Sausage Casserole” and “Beef and Ale Stew”.

I was touched and delighted recently that Lachlan has been invited to Birthday parties, we go along and do our best, we have managed three so far, Lachlan loves parties!

I have heard of and seen two occasions in the last week where Lachlan has wanted to share an activity with one of the playgroup ladies, it was heartwarming to see him go and “ask” the ladies to join in with his games.

Our kitchen is covered in all the paintings Lachlan has painted for us, I still have the very first one he ever did. Going near paint used to result in a complete meltdown from Lachlan. The photos below show just how far he has come. Lachlan now loves paint.

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I guess what I am trying to say and prove in this post is, anything is possible, never give up trying, never give up hope…….

I know in my heart Lachlan will be all he can be, I have no idea where this journey will take us but we will travel together.

I, for a long time felt completely out of my depth with Lachlan, I now believe I can and do make a difference, especially with a little help and guidance from the wonderful team of people known in our house as “Lachlan’s angels”.

Autism, Our lives and Autism

A new year, Mainstream Early Years Education,

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Autism, Our lives and Autism

A special Birthday Party

I remember one of the things that hit me hardest when Autism was first mentioned nearly two years ago, was the theory that Autistic children lack imagination, I can remember feeling terribly sad thinking how do you play without imagination?

Recently I have noticed on numerous occasions Lachlan playing in imaginative ways, I have seen him line up my washing baskets, then sitting himself in the front one, happily shouting “chop-choo, woo-woo”, I have watched him crawl around the floor going “woof-woof” I have seen him make “ice-cream’s” with both play doh and sand, handing them out to us all, with a “yum-yum”.

Lachlan frequently pretends to be asleep, making sleepy noises, being a spaceman or rocket and shouting “5-4-3-2-1-BLAST-OFF” while jumping off something is a long-standing favourite, making cups of tea in the bath and building houses out of anything and everything from Lego to lumps of wood, Lachlan does it all.

I want to share what happened one afternoon last week while Lachlan was enjoying some free play time with his play doh.

Lachlan was sitting at our kitchen table with the play doh ice cream factory, happily making cones as he has done on lots of occasions recently, next thing Lachlan is digging in the large box we store all the playdoh stuff in.  We have a fair collection as I never got round to clearing out the bits Alex had finished with, so out of the box come the characters from In The Night Garden, one by one Lachlan lines them up along the edge o the table.  Upsy Daisy, Iggle Piggle, Macka-Packa and the Tombliboos they are all there, next Lachlan gets a large lump of purple play doh, he sits it on the table, to the lump he adds small pink dots of play doh to the top, all the while I am watching curios as to what Lachlan is up to and watching that none of the play doh is swallowed!

What Lachlan did next had me stunned, delighted and yes it brought tears to my eyes!

Around the purple and pink lump of play doh Lachlan carefully arranges his Night Garden friends in a circle, then to my astonishment Lachlan started singing the words to “Happy Birthday”, word for word, when it got to the point of saying whose Birthday it was Lachlan sang, “Happy Birthday to Upsy Daisy, Happy Birthday to you…”

Lachlan then turned to me and said “Upsy Daisy’s Party”

I threw my arms round Lachlan and replied, ‘yes darling, you have given Upsy Daisy a party, a Birthday party”.

All this was witnessed by Lachlan’s speech therapist who was as stunned and delighted as I was.

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