Autism

I can’t celebrate

I should be celebrating.

I should be feeling proud and happy, that we have achieved so much in such a short space of time.

Both Ian and I attended Lachlan’s support plan review meeting yesterday, the meeting was very positive, everyone was amazed at how much progress Lachlan has made in the last year. Lachlan has made considerable progress in all areas except food and toilet training, don’t get me wrong, everyone who knows me will tell you how proud I am of Lachlan and how pleased I am with how far he has come, what I am really struggling with right now is how much all this progress has cost and I don’t mean in monetary terms.

I never realised until this last week how much was sacrificed to make it all happen and how much damage was being caused because all my time, energy and focus was consumed by the need to meet Lachlan’s targets and care for Lachlan’s needs.

I wonder if I am the only additional needs parent to feel overwhelmed by guilt, sadness and a sense of failure?

I feel I have let Lachlan’s two older siblings down by never having enough time to spend proper quality time with either of them.

I thought as parents we were juggling all three children’s needs well, only I now see that both were only telling us and letting us see what we wanted to see, because both could see how much of our time Lachlan takes up and neither of the older two wanted to add to our stress. Both have hidden from us how they really felt, as a Mum this breaks my heart. I realised this week I didn’t even know the sort of things one of my children was interested in, what bands this child liked, the names of this child’s friends.

Yet this child tells people who ask, that their Mum and Dad are the best and that they try really hard to be the best for them.

For four and a half years; all day every day has been about Lachlan,

it has had to be.

I just wish I had realised before now, sometimes it is only when you stop and reflect that things become clear, at the time I was too caught up in there and then. Sadly it has been the case that life for us all is bearable if all Lachlan’s needs are met and he is happy.

I know we have to find a better way. Problem is how?

We are lucky that we have support from our family who happily take the older two and give them 1-1 time, but what both older children crave is 1-1 time with me and their dad by the sounds of things preferably on their own. I don’t know how we can spread ourselves any thinner?

I met with our disability social worker this week, again I raised the issue of support for Lachlan during holidays and perhaps some time during an occasional weekend, this would give us time in theory when we know Lachlan is safe and we could focus on our older two, all we are going to be offered is the equivalent to two hours a week with a childminder and only during the Summer holidays. That works out at 16 hours over 8 weeks, that is the most social work can afford. I asked about SDS and direct payments, yes we can apply but apparently it is pointless as there are no child centred services in our region we could buy, plus apparently parents are expected to carry out the caring roll where it concerns children. The fact Lachlan can be in need of 2-1 care at times is apparently irrelevant.

I will find away to make things better for my older two, I guess we just learn to juggle better, to try harder, there isn’t really any other option.

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Autism

All change……

On the 12th of February we moved to a beautiful new home, we are still in the same town and the kids still attend the same schools.

I never realised how stressed our old home was making me or just how unhappy I was until now. Moving house is meant to be one of the most stressful things you can never do, yet for the first time in a very long time I feel at peace, for me it is like a strange sense of calm has washed over me.

Although when I think about it I can still see the awful images of Lachlan walking out the door and not being able to reach him and a drowning child, for now the nightmares I was plagued with have stopped. The nearest river is a good 10 minute walk away.

Moving was very, very stressful, Lachlan managed to escape once and nearly got run over!

I shook for nearly an hour after, it was no ones fault, the door was left open, everyone thought someone else was watching Lachlan. I never held my boy so tight, it was strange though, I took Lachlan inside, I sat him on my knee, looked him in the eye and told him never to go out on his own again, I told him he could have been hurt, I then fell apart and needed my Mum to put me back together, a little while later though Lachlan came up to me looked right at me and said ” I am sorry Mummy”. Both my Mum and I were speechless, I honestly think Lachlan understood, it just took him a while to process it all and find the right words.

It really hit me then, just how huge the responsibility of keeping Lachlan safe is.

Someone once said to me God never gives someone more than they can handle, I am not sure I believe this, I have been really struggling with my faith for a while now. The responsibility that comes with caring for Lachlan is immense and incalculable. The fear I felt that day will stay with me for ever.

Yesterday our locks were changed so that a key is needed to open the doors on both sides, a much needed safety measure. We are waiting on other safety adaptations keypads for the toilets and lounge and a permanent 3/4 height barrier with lockable door to partician off the open plan kitchen.
The keypads for the toilets are to stop Lachlan playing with the taps and toilets and the one for the lounge is so we can keep Lachlan downstairs.

Lachlan loves the new house, Lachlan loves his bedroom, Lachlan loves the space, Lachlan took the move pretty much in his stride, he has really impressed me with just how well he has coped with all the upheaval. After Lachlan’s first visit to the house, he was asked what he thought, again there was a delay, his answer was just one perfect word,

“Amazing!”

Lachlan’s bedroom is opposite ours, so far he has managed one night all night in his own bed, we have put a gate across the hall after he went wandering down the stairs in the middle of the night, so now he can only wander to our room, some nights he is managing until 6.00am others he is in with us by midnight! I have to admit that one night I actually missed Lachlan, which is complete madness considering I have waited nearly five years for Lachlan to do a full night in his own bed!

Lachlan wants lights on all night, our old home was lit up like Blackpool illuminations thanks to two lampposts at both the front and back of the house, we have invested in night lights and a nursery lamp, it is early days though and perhaps Lachlan has inherited my fear of the dark.

I still remember being his age and being terrified of the night.

We are still trying to organise the new house, I think it will take months to get everything just so, but for now we are getting there.

Lachlan’s speech is taking another little leap which is magical, today at lunchtime we were hit with a blizzard, Lachlan turned to me and said “Look Mummy it is snowing,” “cold”, “frozen” these little steps mean so much more than most will ever understand, it is not just about the words for me it is the joy that comes from knowing Lachlan wants to share something with me, two years ago Lachlan only had two words, we now have short often meaningful sentences which are even in context.

Another favourite with Lachlan at the moment is to ask for “music to dance”, Lachlan sings along sometimes, though I have realised I need to watch the lyrics of what I am listening too as on Sunday he was singing along to Meatloaf and came out with “sex, n, drums and Rock and roll!” The wee monkey saw my reaction and repeated it over and over between giggles!

Another battle we have finally won is that Lachlan will now wear something other than boots on his feet, he has slippers and gym shoes and seems to quite like them.

It is the little things……

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Autism, Our lives and Autism

Swimming In Treacle

It hasn’t been a bad week here, it hasn’t been a great week either.

I have the “swimming in treacle” feeling.

There is so much uncertainty so many changes looming, it all feels overwhelming.

We might be moving to a bigger house, hopefully we will know for definite in the next few weeks, whilst that would be a positive change in the long run, in the short term it would mean a lot of upset and a very unsettled period not just for Lachlan but for us all.  It is stressful enough for children who can understand the concept of moving house, it must be a 100 times worse for thoes who don’t.

Lachlan seems to be having a stand still on the progress front for now, stand still’s leave me feeling uneasy, there is a constant fear that all the progress will slip away, regression can happen, the fear of it is always there at the back of my mind.

We have a review / transition to school meeting in just over a weeks time, after the disaster that was our last review meeting, I am not looking forward to this one, my wee man is not ready for school and I am not ready to let him go.  The gap between Lachlan’s stage of development and that of his peer group is huge, all he really has in common with thoes children is his age.

All the professionals think school is the way forward.

I often wonder if one day Lachlan will catch up?

I look at the autistic children of others and wonder when Lachlan reaches the same age will he be like them?

Will we find ourselves facing the same challenges?

How do we know what the right choices are?

I look at the town and region we live in and there are next to no resources at all specifically for children or adults with Autism, in the future there maybe but what will it mean for my family if there are not?

Autism has made me very unsure of the future and where we are going. Already it has altered our path considerably.

 

 

 

 

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Autism

This is Autism, the hidden disability

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

Every thoughtless coment, wounds.

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

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

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

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

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

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

So where to begin?

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

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

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

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

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

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

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

can you feel his frustration?

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

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

give it ten minutes are you exhausted?

frustrated?

What happened in your program?

How far did you get with reading your book?

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

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

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

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

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

no height is too high to climb,

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

electrical cables are great for chewing,

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

Lachlan appears not to notice the taste.

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

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

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

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

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

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

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

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

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

This is Autism.

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

Yes, I am talking about smearing!

How would you cope with that?

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

Now try cleaning up the mess whilst properly watching Lachlan.

This is Autism.

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

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

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

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

This is Autism.

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

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

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

This is Autism.

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

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

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

What if no one wakens up when Lachlan goes wandering?

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

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

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

Could you go years without a full nights sleep?

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

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

This is Autism.

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

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

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

This is Autism.

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

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

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

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

stress.

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

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

This is our families lives with Autism.

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Autism, Our lives and Autism

A very Merry Christmas

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

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

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

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

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

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

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

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

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

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

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

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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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