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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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, u 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.

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 understood 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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