Autism, Our lives and Autism

Is a carers life a luxury?

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

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

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

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

So when does a parent become a carer?

A difficult question to answer, the official definition is:

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

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

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

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

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

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

Lachlan is now four and a half.

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

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

Weekday:

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

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

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

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

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

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

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

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

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

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

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

8.30pm milk and melatonin.

9.30pm Lachlan asleep!

11.00pm Lachlan to bed. We go to bed.

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

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

5.00am Lachlan finally goes back to sleep!

Weekend:

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

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

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

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

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

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

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

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

Is a carers life a luxury?

I will let you decide.

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Autism, Our lives and Autism

Jingle Bells, How far we have come….

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

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

Lachlan “need iPad”

Mum “why?”

Lachlan “need iplayer”

Mum “what are you going to watch?”

Lachlan “teletubbies”

and

Lachlan “Go outside”

Mum “why?”

Lachlan “moon and stars”

Mum “come on then”

Lachlan “no moon”

Mum “where has the moon gone”

Lachlan “cloudy, clouds”

and

Mum “what did you do at playgroup today?”

Lachlan “build a house”

Mum “what else did you do?”

Lachlan “went outside”

Mum “did you paint today?”

Lachlan “yes” (answered with paint in hair)

and

Lachlan “need a pumpkin”

Mum “why do you need a pumpkin?”

Lachlan “For Halloween”

Mum “Halloween is finished”

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

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

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

 

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

 

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

“can we now have speech therapy?”

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

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

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

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

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

The question I ask myself all the time,

“Is Lachlan happy?”

The answer,

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

 

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

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

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

In the first post I wrote about Lachlan starting playgroup,

The road to mainstream Pre School…

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

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

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

Miracles do happen….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Autism, Our lives and Autism

A new year, Mainstream Early Years Education,

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Autism, Our lives and Autism

A special Birthday Party

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

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

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

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

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

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

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

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

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

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

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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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