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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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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Autism

Holidays Away

I live for the holidays! I love to get away, whether to explore somewhere new or revisit an old favourite, holidays are for us, quality family time together.

We have been taking Lachlan on holiday since he was 7 weeks old, we have stayed in youth hostels, hotels and self catering. We have traveled as far North as Inverness and as far South as Windsor, we have never been brave enough to travel any other way than car but we hope to in the future get to Euro Disney so ferry or flying will be a must.

I have to say that taking Lachlan anywhere over night or longer, is a military operation, involving careful planning, checking and double checking. Due to Lachlan’s dietary needs we have to take all the food he will need with us, as there is never any garuntee the local shops will sell oat milk, dairy, egg, gluten and soya free snacks or toddler meals. Can you imagine what 3 meals a day, plus snacks, juice and milk look like?

Lachlan is still in nappies, so a big enough supply of them has to come too, we never manage to go through just one set of clothes a day, in fact getting away with just three changes in a day is usually good going, the big buggy, chewies, medication, some toys, iPad, cups, plates and cutlery.

I have also found it very helpful to carry with us Lachlan’s Autism Report, Coordinated support plan, DLA entitlement letter and my carers allowance letter, these documents are the proof required at entry points to attractions to receive any possible discount on ticket prices, sadly due to others abusing the system they are also the key to gaining the passes which allow disabled children and carers to access rides via the exit points at theme parks. Most importantly of all these documents are vital in the event of having to access medical assistance, firstly because they give detailed information on Lachlan’s disabilities and needs but also because they carry the contact details of the professionals who know Lachlan well and who’s advice may need to be sought. That is everything Lachlan needs.

We have to fit all this in the car, along with ours and the older two’s luggage.

Before we even get to the packing though, I will have called where we are planning to stay to make sure everything is in place. I check where we are planning to stay has WiFi, any length of time without internet access for Lachlan is unbearable, when in unfamiliar surroundings the iPad is Lachlan’s best coping strategy, he can watch his favourites via the iPlayer or Love film, play his much loved apps or access his favourite websites, all are familiar and reassuring to Lachlan. A microwave is a must for making ready brek, a bath as Lachlan is terrified of showers, enough beds that Lachlan can share with Ian or myself and preferably Alex and Hamish in separate rooms, I usually end up sharing a room with Hamish and lastly enough indoor and outdoor space to give Lachlan the freedom to move when sensory seeking!
I will always look for somewhere set well back from any main roads, not too close to any rivers or open water, Lachlan has a passion and dangerous fascination with water. I will have double checked the local amenities, to see there is what we might need to hand and how to access help should we need too, especialy in terms of GP and out of hours cover.

All the planning is worth it though, as once we are away, everything stops! All the appointments, meetings, phone calls, decision making, pressure and stress all stop! For me even just a break from having to think about everything constantly is magical. For a week if we are lucky two we are just like any other family enjoying time away together, all three of my children benefit hugely from having thier parents relaxed, happy and available to only them.

Lachlan loves being away, I am led to believe this is a little unusual for a child on the Autistic spectrum, I am certain it has a lot to do with the fact that each year our main break away is to the same location and we visit the same attractions we visited that very first time we took Lachlan away. Lachlan associates days out and holidays as fun and exciting, we always think carefully before taking Lachlan anywhere about what he will get from the experience.

Last month we headed South to the Peak District, we stayed in a lovely self catering cottage just outside Ashborne. We had an amazing week, I am not sure even Disney could match the magic.

We drove down on the Friday and it was gone 7.30pm by the time we found our cottage, three bedrooms, kitchen and lounge area, the master bedroom had a beautiful four poster bed, the other two rooms both doubles, our intention was that Lachlan would share with his older brother, Lachlan shares our room at home so we hoping for a break from our 4.00am bed visitor. I never did get to spend the night in the four poster bed, Lachlan was having none of it and he ended up sharing the four poster with Ian and I ended up sharing a room with my older son, not quite what I had mind but not a battle worth fighting either.

We visited the local town on the Saturday, Ashborne is a market town with lots of lovely little shops and pubs, the locals were very welcoming and friendly. In the afternoon we visited Duffield railway and all enjoyed a ride in Iris the diesel Locomotive, Lachlan sat at the front with Hamish and loved when Iris chased pheasants off the track.

On the Sunday we took a drive to Twycross Zoo, Lachlan loves animals, he loves to watch them and will spend ages at an enclosure especialy if it is home to one of Lachlan’s favourites, those being penguins, elephants, big cats and the larger monkey species. Twycross, is home to Humboldt Penguins, Snow Leopards, Elephants and they specialise in monkeys, the enclosures were beautifully designed so much so Lachlan could really see all these animals close up. Lachlan loved watching the Penguins antics both above and below the water and we were splashed by an elephant much to Lachlan’s amusement, much to our horror Lachlan tried very hard to get in beside the elephants!
We all enjoyed our day at Twycoss.
That night we ate out in the local pub in Ashborne aptly named George and The Dragon, Lachlan coped so well and sat long enough, with help from the iPad for us all to eat a meal.

On Monday we spent the day at Alton Towers. This was meant at to be the highlight of our holiday, the day got of to a bad start with Lachlan going into meltdown, the poor wee chap was heartbroken and hysterical, we couldn’t console him at all, I honestly thought we were going to have to abandon the park and I was standing their torn between doing what was right for Lachlan and not spoiling a much longed for outing to Alton Towers by my older two children, knowing how devastated they would have been had we had to leave. We decided to see if a shot on one of the rides in CBeebies Land wouldn’t help calm Lachlan down, so we headed for the “In The Night Garden” boat ride. Thankfully our day out was saved, Lachlan settled quickly and loved seeing all his Cbeebies favourites. Lachlan loved the rides and activities, his favourites were the Postman Pat van ride, the Zingzilas stage show and Charlie and Lola’s house. Staff at Alton Towers were very understanding and helpful, my only criticism is the amount of loud music they have playing, different theme tunes but as the rides are so close together is just a noise.

On Tuesday we visited the National Tram Museum in Crich, we were not expecting much but were impressed. It was a great family day out, all three children enjoyed wandering round the museum and rides on the old trams, they had a brilliant soft play which meant we could allow Lachlan some much needed freedom to explore and play.

Wednesday was our other surprise for Lachlan, though after his initial reaction to Alton Towers I was not so sure how we were going to get on. We headed to Drayton Manor, home to Thomas Land. I think it is fair to say this was the happiest and most magical day out we have ever had as a family, I always have had a special affection for a little blue engine and dark red bus from my own childhood, but for Lachlan the day was truly magical. I was touched and proud of Hamish and Alex that day too as they happily gave up time in the main park to give Lachlan more time in Thomas land, they willingly took turns on rides with Lachlan. Lachlan loved it all, the trains, the troublesome trucks rollercoaster, Harold the helicopter ride, all of it was so brilliantly put together, the staff were understanding and helpful, at the end of the day the chap manning the Bertie Bus ride Lachlan was really taken with, let the boys just stay on and switched the ride over to always on, so the boys didn’t have to get off between goes, Lachlan was heartbroken when it was time to leave. We have promised to go back again hopefuly next year. If you show Lachlan photos from that day he will tell you “Thomas Land” and even now a month on Lachlan’s eyes still light up.

Thursday we visited The Heights of Abraham in Matlock Bath, we rode on the scariest cable car, so much so I walked the two miles back to the base station! The views were stunning from the top, the Peak District really is beautiful. We all took a trip down an old lead mine, which Lachlan happily enjoyed, I found it unnerving, heights and confined spaces are not my favourite things. Ian and the kids enjoyed the cable car back down.

Friday was our day to leave, we decided that as it was not too far that on the way home we would visit Chester Zoo and stay over night in Warrington. Chester zoo was outstanding. We all enjoyed our day there, Lachlan loved the animals, it was the first time he had ever seen a giraffe, a spectacled bear, lions and rhinos. The enclosures at Chester were everything I had hoped and more, Lachlan was able to see all the animals so closely and clearly, he laughed when the lion roared and the spectacled bear climbed her tree, his favourites as always were the penguins.

Lachlan has been happy to show his playgroup photos from our time away and amazingly has even managed to say a few words about the photos.

All the planning and effort was really worth it.

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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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Autism, Our lives and Autism

Sometimes it’s all just too much…….

Today was Lachlan’s big review meeting and I fell apart in the middle of it!

I was sitting there and it was such a positive meeting everyone was saying how well Lachlan is doing and how far he has come in the last year both of which are true, then I just went to bits………

I wanted to scream at everyone “is this as good as it gets?”

Somedays I feel trapped in a living hell!

Lachlan swings from my curtains like a professionally trained trapeze artist, does headstands on top of furniture, he thinks the dogs bowl is;  in his woods “a paddling pool”, climbs constantly, has opened the oven door, shouts splash at the pot of boiling potatoes cooking on the hob, has chewed through several power cables and flushed goodness knows all what down the loo!! (toilet)

Take your eye of the ball for a nano second and I guarantee Lachlan will no longer be engaged in the activity you left him at. His current favourite is the dogs bowl!

The door goes, the phone rings, you need the loo, on return all hell has broken loose!

I always make sure Lachlan is never in any danger, we are all very aware, but it is exhausting, I don’t even switch off in my sleep, the other night my older son got up to use the loo, I heard water and flew out of bed panicking Lachlan was puddling in the bathroom, this is at 4.00am! Lachlan was of course sound asleep at the foot of our bed oblivious to the fuss. Poor Hamish got the fright of his life!

I need a break, I am done in, I guess I need to fall apart, I have been strong too long, I need to let it all out……

I am so angry with myself…..

I should have seen it coming, I have been listening to Guns and Roses November Rain,  Let it be by the Beatles and lots of P!nk up loud in the last few weeks, my music therapy you could say, a warning that I am struggling though.

The worst bit is I fear I have hurt a few of the wonderful allies who fear they have upset me.

It is so hard to explain the roller coaster I am trapped on, I truly celebrate every little step Lachlan takes with heartfelt joy, I tell anyone who will listen how amazing my boy is but then the frustration grows in me it builds and knawes away, little things that fill me with joy will then break my heart all in one go,

The day I taught my little nephew to ride his bike without stabilizers, I was so proud in that moment I couldn’t have been prouder of that wee lad, but then it hit me, I might never teach Lachlan to ride a bike….

The conversations I have with my nephews when they want to tell aunty Vicki something, I am delighted they want to tell me, then later on I wonder will Lachlan ever tell me about his day in the same way?

It hurts. No matter how had I try to not let it, It really does hurt.

It is the constant immense pressure I feel under to keep pushing Lachlan on, all if Lachlan is doing so well and is happy can’t we just stand still for a little while?

Enjoy the moment?

 

Just breathe.

Lachlan is just a little boy, my little boy.

 

Today it all just got too much, my guard slipped.

 

 

 

 

 

 

 

 

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Autism, Our lives and Autism

Birthday Boy

“What a difference a day makes! This time last night I was in floods of tears feeling robbed and thinking way too much about what other four year olds do on their Birthdays that Lachlan wouldn’t do.

First thing this morning I sang Happy Birthday to Lachlan and he replied by saying “cake” then we had music therapy and Gill played “happy birthday” several times on keyboard much to Lachlan’s delight, we brought out the cards at lunch time and thanks to the “look who got a letter” song from Blues Clues Lachlan opened his cards with help and a huge grin.

A little while later we gave Lachlan the one wrapped present Gran and Grandpa had brought, Lachlan opened it with help from Gran and was delighted with the tractors jigsaw inside.

We then had home visiting teacher in, this was when we gave Lachlan his play table and train set, both my little and big boys have had a great time with it! At tea time Nana and Graham came and we had cake and candles and sang “happy birthday” twice, Lachlan loved investigating the candles, then Hamish gave Lachlan his present, at supper time we sang and had candles again and Alex gave Lachlan her present which both Alex and Lachlan played with for a while.

Lachlan has loved every minute of a stress free amazing day and I have no doubt he knew it was his Birthday, his special day, we achieved so much today, so much that most people take for granted, it is the little simple things that give hope and bring happiness and joy, Vxxxx”

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Autism

The Road To Mainstream Nursery Part Two

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

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

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

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

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

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

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