Ten signs I dread as an autism parent

I have two children with autism. Some days are wonderful, calm and peaceful but some days my children become so distressed over something and there is very little I can do to calm them down.

This week for example I took my son to the local store with me only to discover his favourite lift was ‘out of order’. It took hours for him to get over that sadly. Then today I had to take him for an appointment at hospital but on our way back to school one of the roads was closed and I had to take a diversion. This change caused so much upset it took three members of staff to support him back into school.

thise are just two examples of how a sign can cause so much upset to my children, even though one of them still can’t read. I try and avoid the following ones as much as possible.

1.
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After today I will be checking websites before trips as this simple red road sign caused so much upset and confusion. Rigid thinking means my son expects to go the same way every time and this is just not allowed!

2.

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Sticking with road signs this one particularly makes my daughter cry! Her sound sensitivity means that even with ear defenders on the noise of people digging up a road is more than she can bear.

3.

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My final road related one is this.

Stopping or waiting is not something either of my children find easy at all. This little light has caused so much screaming, yelling and biting in my family. They may have to learn but the less of these I have in any journey the better off we all are!

4.

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So we did the social story, the now and next board and then navigated the journey only to get there are find this! This one has to be one of the worst signs any parent sees when they have excited, prepared children. Sometimes, just sometimes, Google is wrong and opening hours are NOT as advertised. The fall out from this one is BAD!

5.

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They want one thing for their birthday, just one thing. And all you see is this! Or in my daughter’s case they have a very limitted diet and only eat a certain brand of a certain spread. But the shop shelf has this. This one sends me into as much of a meltdown as my kids!

6.

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Sticking with the food theme. So you stocked up on the few things they will eat but finally you realise you need to restock…and you see this small but terrifying label on the top corner! Run for your life…this is as major as a packet changing in my house! Don’t kid yourself…they will notice!

7.

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Please be quiet? Are you serious? Have you tried to keep any child quiet anywhere, let alone a non verbal child with autism. My children make their presence known and find it pretty much impossible to keep either of them silent.

8.

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This sign is so hard to explain. Unfortunately my children live in the age of instant wifi and can not yet work out why anywhere would not have free instant access to the Internet. Neither of them can understand why apps don’t work in certain places or why they can’t keep watching you tube in the car. We have had lots of outrage over this one!

9.

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Sticking with technology this little red face has in turn made my little darling’s faces turn a similar shade. I have nightmares about this little icon! For those who don’t know this one means you tube has stopped working…in other words the world has ended in my house!

10.

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And finally, you may wish to look away from this one as the sight of it has brought many an autism parent to tears. The meltdowns this has caused can not be counted. Apparently technology should have endless power and energy…rather like they expect me to as an autism parent too.

Looking at these signs has driven my power to less than ten percent too, so I will leave you with my favourite sign ever as an autism parent:

Race you there!

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Just don’t ask my neighbours!

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Most of the time I am happy that people don’t know what really goes on behind my front door. I live in a quiet dead end street in an end terraced house with neighbours either side of me. Ordinarily that would be fine but I also have two children with additional support needs. Between them both they have diagnosis as long as my arm including autism, global developmental delay, neurofibromatosis type 1, anxiety, visual impairment, learning difficulties and a whole heap of sensory issues. One of the twins is non verbal.

Maybe one day I will tell my neighbours some of their issues. But right now I am having fun wondering what they might tell you about us.

The lady two doors down might tell you about the morning she saw me wave my daughter goodbye to nursery on the bus while she happened to look out her window just as my son was running down the street flapping wearing nothing but his red school jumper! If you are going to talk to my neighbours it may be best to avoid that one.

The previous neighbour to my right that moved out last year may not have been a good choice to talk to either. He might tell you about the time he caught my son standing at his camper van licking it clean! Thankfully he sold up and moved out a few months later so I might not hear about that one again.

Mind you the couple and their son who moved in after him may be best avoided too. They would only tell you about the screams they hear from my children most nights like they are being killed. I could tell them I am only cutting heir nails or washing their hair but somehow I doubt they would believe me.

The neighbours the other side are not the best choice either I’m afraid. They could tell you about the time they had friends over for a BBQ and turned around to find my son helping himself to the food while they were all busy chatting. Please, please avoid the wife! She was sunbathing one day and as she looked over her hedge she saw my naked son running along side the hedge with his eyes right up against the bush peering through it. I maybe should tell her he is visually impaired but unfortunately she isn’t, so she probably thinks the naked child requires more of an explanation. She hasn’t been sun bathing as much this year for some reason.

The elderly lady across the road could tell you a good few stories. Like the time she saw us manhandle our child into a taxi and wave goodbye to him and he screamed in sheer horror. One day I might explain it was a different colour car that day and he could not cope with but in the meantime it maybe best to keep your distance. She has also saw us a few time wave our hands in glee as the children left for nursery or school and I have a feeling she thinks we look too happy to see them go. There could be some truth in that some mornings.

When we moved into this street we were reliably informed that it was quiet and that there was very little movement in terms of people selling up. It was seen as sought after. We seem to have pleased the estate agents though as since moving in at least three houses on the street have changed hands. We must be a good influence I think.

I’m quite sure my neighbours wonder why my son always wears the same school jumper everyday. Or why we have so many ‘visitors’ who come for around an hour a time and then go again (Social workers, occupational therapists, speech therapists, physiotherapists). They are maybe suspicious of the plain white van that drops huge boxes to us once every two months (nappy delivery month), or wonder why we get our refuge collected once a week when they are on a fortnightly schedule (that’ll be those nappies to blame again!). If they knew where we were going they may wonder why we take the kids to hospital appointments so often or why if they come to the door it is always locked and the key hidden away (think back to the half naked child escaping). They may wonder why my son never talks to them or my daughter won’t look them in the eye. They may even wonder why they see me regularly carrying six year olds who are screaming and trying to bite me. They have no doubt not seen many parents hang out bedding that is half eaten before or hear a child so distraught because you dared peg an item of clothing out without the pegs matching. If they saw my weekly shop they may even judge us for buying only the same select few things every week. A balanced diet in this house means a biscuit in each hand sometimes!
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I’m not sure my neighbours have heard of autism. But I do know they have heard my children! If you want to find out about me please talk to me and whatever you do…just don’t ask my neighbours!

Is it time to return to routine yet?

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‘Mummy, it’s 3 past 6 o’clock.’

They don’t do lie in’s, my children. They don’t do early nights either for that matter. And my 5 year old number fixated daughter has just discovered a little alarm clock. In true autism style it has become the latest thing to be carried everywhere. And thus we must be informed of the time at every opportunity. Except she can’t tell the time yet so the results are funny, cute but incredibly annoying all at once. Does the speaking clock require a stand in for a day or two?

‘Mummy, it’s 4 and 6 o’clock. That’s breakfast time you know.’

Sigh. I guess I should be happy she wants food when she is such a fussy eater. Chocolate spread sandwich it is again. Oh to try cereal just once.

‘Mummy, the clock moved again! Look it’s 8 o’clock and 6 now.’

‘I’m sure that must mean it is wash and dressing time honey.’
‘Don’t be silly mummy that is 11 past 1 o’clock. It is numberjacks DVD time of course.’

Strange that. Always seems to be numberjack time. Maybe I should change the battery in that clock sometime.

‘Mummy come quick, did you see the clock move again. Look it’s on the 5 now. That’s my favourite number. That’s my number. I think it will go to the 6 next. Yes, I think that. Did you know 6 comes after 5 mummy?. Look it’s 5 o’clock and 6 now isn’t it….’

Oh yes, that means shower time for mummy. Quick check that twin brother is settled on google earth travelling into oncoming traffic on the motorway and mummy is out the room.

And breathe. Surely one has to be safe in the bathroom….

Was that a little voice I heard over the noise of the running water?

‘Mummy, I just had to come show you this. Guess what? It passed the 6 and I missed it. Fix it mummy. It can’t move to the 7 if I missed the 6 can it? Fix it mummy, please. Oh mummy, Isaac is screaming down stairs too. He wants mashed potato again for breakfast but he can’t have that because that was at 6 and I missed the 6 mummy. Fix it now mummy!’

Now I know I have eyes in the back of my head. I know I can cook up a meal for four on just half used bags of all sorts from the back of the freezer, I know I can wipe noses, fix iPads, change T.v channels and catch an escaping child all at once…but turn back time because she missed the six while still dripping wet and naked in the shower? A quick turn of the clock and all is well. Now surely that means 5 minutes to get dressed and ready? You kidding! Remember her brother is screaming for mashed potato down stairs…

So towel tied around me, hair dripping, and glasses still on the bathroom windowsill, this is what I face in my return downstairs.

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Now if only that turning of the clock could mean a rewind of everything for 5 mins! A quick turn on of a lift door opening on you tube and a run upstairs to get ready. Passing the ‘talking clock’ on the way of course…

‘Mummy, it’s passed the 6 now. That means almost 7 o’clock you know…’

I used to take my time dressing, choosing clothes, drying my hair, even stopping to check myself in the mirror. Now I break world records getting ready only checking the mirror to make sure I didn’t accidentally put talc in my hair instead of shampoo.

While dad has returned from hanging out washing in the garden (I am sure this is just an excuse to escape) and little miss talking clock is happy resuming her watching of numberjacks, I check the fridge to make sure nothing got eaten by Isaac in his search for mashed potato, and make him a drink and snack while I am at it. It really will only be a matter of time before he once again screams for that illusive mashed potato. So I offer mr lift door watcher a biscuit. Aghhh, how could mrs asd super-mummy not have known that all said biscuits were indeed broken. Cue meltdown once again.

Time for escape plan A. Trip to the shop. Who cares what time that little clock says this mummy needs a cup of something full of caffeine and we are either buying the shop out of mashed potato or biscuits…but we are NOT buying anything, I repeat anything, number related! At least the boy won’t bleed my ears in the car other than with screaming.

And then he did it. Maybe he wanted out from the constant number and time talking. Maybe he realised this mummy was on a mission. Maybe he actually understood he was getting biscuits. Either way he was just utterly amazing. Walking right through his beloved automatic doors, right to the biscuit aisle, picked up some biscuits and then went to the checkout to pay. Actually if only I could pause time right now. Because this was something incredible. My non verbal, global delayed, classically autistic son just held my hand and walked into a supermarket with me to buy biscuits. He even put them in a bag and walked back to the car with me. And carried them into the house.

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‘Mummy you missed the 9. It went past the 9 and you missed it. I think we should have biscuits at 12. Yes, that can be biscuits time. 12 is after 11 but we are not at 11 yet. Because they are really big numbers. You have to wait a long tome for the big numbers….’

Too late, the boy had eaten three biscuits by then anyway.

‘Mummy, daddy dressed me. But he did it wrong again. He did it at 10. But I wanted dressed at 3 o’clock. I told you that. And he didn’t pause the DVD. So I missed the good bit. You know the bit with 3 launching out the sofa. Where’s my number 3 mummy…’

So in between the clock watching, the never ending time talking, the screaming for mashed potato, the full volume videos of lift doors opening and closing, trips to soft play and parks, we have also somehow managed to squeeze in two visits from the children’s different speech therapists, a visit from the health visitor, a visit to the eye clinic and a meeting at the daughter’s nursery. How did we find the time…

Actually just talk to Naomi about that one. She’ll tell you what number on the clock they all came at, left at and everything else in between.

I love my children. I love being a mummy. But is it time to return to routine yet?

If my 5 year olds ruled the world…

I am the mother of five year old twins. They both have autism spectrum disorder but in many ways they are just two beautiful, funny, loveable children. And, as every parent of young children knows, children think they know everything (even when they can’t speak). So for a bit of fun I thought I would share what life would be like for us all if my two five years olds ruled the world:

1. Mr moon would only ever come out at bedtime and there would be stars every night irrespective of weather conditions.

2. The sun would shine whenever they wanted but never when they are trying to do something like look at a book in the car as then it should vanish so as not to get in their eyes.

3. Lights should come on every time you enter a room but never on full as too much light hurts their eyes.

4. Light switches should all be child level so they can play on and off lights any time they so wish.

5. TV channels should only ever show the programmes they like and never anything scary, naughty or too loud. And never any presenters or other boring bits like adverts in between.

6. Everyone should live in houses with automatic doors as they are much more fun than boring old conventional doors.

7. Everywhere should have lifts as there is nothing better to play with than lifts. They were only invented for the entertainment of children as adults can clearly just use the stairs.

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8. As soon as a toy is requested by a child they should have it NOW.

9. Nothing should require being explained. Parents should know everything that ever happens to you, whatever everyone says to you and who you play with at school and nursery.

10. All restaurants should be like macdonalds and have toys with their meals and be ready instantly. No child should ever be made to wait for anything in life.

11. It should snow whenever a child feels like building a snowman. Seasons are something teachers talk about and not related to the weather in any way.

12. Toy shops, museums, soft plays and any children’s centres or clubs should be open whenever children fancy going not just during working hours. Do these managers not realise a child might wake up at 2am wanting to go to soft play?

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13. Ice-cream can be eaten any time of day. Why stick to cereal or toast for breakfast? How boring is that.

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14. Sprinkles can be put on anything. Fact.

15. Who invented socks with seams? Or lace up shoes? All clothes should be fluffy, warm, comfy and seamless. And have fluffy feet instead of socks or shoes.

16. Baths are for playing in not getting clean in. The more water on the bathroom floor the better.

17. No-one should be allowed to make loud noises without prior warning. Fireworks should be silent, dogs should not bark loudly, and people should never ever shout.

18. Adults should be sent to the naughty step for bad behaviour too!

19. Using picture cards to communicate is the way forward. There is no need for such other things like email, post, or telephones.

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20. The answer to every question is yes. Not ‘wait and see’, ‘just a minute’ ‘not now’ or ‘ask dad’. Such vocabulary should be against the law!

21. Mums should be able to read your mind. They should know exactly what you want to eat, what you want to wear and where you want to go at all times without any need for communication.

22. Everywhere you go should be in the same direction, preferably on the route to school so as not to confuse them.

23. Homework should be abolished. Home is for fun and playing not learning! Who would ever learn anything from being at home?

24. Other children are only useful for having different toys to explore. After you have seen their toys and licked them or lined them up they have no other purpose.

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25. Bedtime is when people are tired. If that is 4pm or 4am then what difference does it make?

26. Likewise getting up time is whenever you wake up. Why waste hours in bed when you could be playing? So the house is dark..that’s what lights are for!

27. Wifi should be everywhere: In the car, while you shop, in school and nursery and even at the dinner table. Do other people not realise you are watching something on you tube? How will you ever know what happens to the teletubbies if the internet goes off?

28. You tube should know your favourite 20 seconds of clip from your favourite video and automatically have it on repeat for you all day long.

29. Everyone should wear pull ups. Why would you want to interrupt what you are doing to go to another room just to pee?

30. Mummy should never ever leave you. What if you get scared, or have an accident, or randomly think of something you want to tell her about something you remembered from last summer? She should always have drinks and snacks available too wherever you are.

31. Nothing should need paid for. If you want it why should money and cost come into it. You just put it on the belt, get it ‘beeped’ then press numbers in a machine. How does that stop you having what you want?

32. Holidays should be whenever you want. If it is sunny you should go to the beach not to school. If it is snowing you build snowmen. If it is raining you splash in puddles all day. School is only for the times in between.

33. Made up rules are the best. Why go down snakes in a game when that means you might lose? Why turn only two cards over to match them up when you will never find the one you want unless you turn them all over? If you are losing just change the rules so you win. That works much better.

34. School and nursery should start when you have had time to finish playing first. And end when you get bored.

35. Washing machines are great entertainment, as are boxes, buttons, coat hangers and pegs of any sort.

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36. Everybody needs a teddy bear. You never know when you might need a cuddle.

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37. Bubbles should be everywhere.

38. Wall paper should come with colouring pens so you can make it any colour you want whenever you want.

39. Floors should be made of rubber so you never hurt yourself when you fall.

40. It is still ok to want to be carried. Sometimes life gets too overwhelming and we all need picked up and carried to safety.

Maybe the country really should be run by 5 year olds after all. Anyone fancy a game of snakes and ladders…

Life can be funny at times…

My twins both have autism, although at very much opposite ends of the spectrum. But most of all they are two very unique individual children who keep my life interesting and give me so much laughter.

Here are some of the funny and ironic things about my family:

1. I actually told the non verbal child to be quiet today.

2. Yes, the non verbal child is almost always WAY noisier than the very verbal one.

3. My daughter suffers from chronic constipation and needs daily meds but we really struggle to get her to drink them. Her twin brother could poo for Britain but would happy drink her medicated juice! (I will leave the results of that one to your imagination)

4. The child who makes the most mess is also the one who is terrified of the vacuum cleaner. The one who is spotess would help me clean all day.

5. The child who hates sweets loves brushing her teeth. Her brother who would live on chocolate goes crazy at even the sight of a toothbrush.

6. The child who has a mobility pushchair often screams to get out of it, while the one who is walking often cries to get in the buggy. It is not an option to just swap them over. 

7. The one who eats ANYTHING (including non food items) will strangely not touch crisps (potato chips) while his twin sister who is a very fussy eater would eat crisps until she turned into them.

8. The child who constantly wants outside to play HATES wearing socks and shoes but the one who wants to stay inside all the time will only ever walk about the house with socks and shoes on.

9. The underweight child keeps nagging me to eat and cook healthily, while the one who could do with losing a few pounds wants nothing better than a fry up.

10. It doesn’t matter how long you have never looked at or played with a toy, if the other child wants it it suddenly becomes your favourite.

11. When a t-shirt fits comfortably you refuse to wear it but suddenly when it is now too small for you you want to wear it all the time.

12. They refuse to eat a certain food until gran makes it and then all of a sudden it becomes your new favourite food.

13. You finally get the kids to stop wearing coats after 4 weeks of solid sunshine and warm temperatures, then when they suddenly ‘get it’ it starts to rain.

14. The Doctor doesn’t want your child missing school so makes the next appointment in term time, in school hours on a school day.

15. Your child finally moves up a nappy size just when the next two months delivery arrives…in the smalller size!

16. You can get grant funding for toys for the child who refuses to play with toys, but there is no funding available for the child who would really enjoy and play with toys.

17. The child with poor eyesight can miraculosly see a chocolate button from accross the room but struggles to see the spoon he has been given to eat his dinner with.

18. The child who can talk, knows her colours and numbers, can write basic numbers and understand the world around her is staying on at nursery but the child who has no speech, is still in nappies, has little understanding or awareness of the world and is locked in his own world is starting school.

19. The child who requires to have new school shoes is screaming because he doesn’t want them while the one who does not need them is screaming for you to buy her a pair.

20. The boy who never wants to go to bed to sleep would happily lie on his bed playing all day, whilst the child who loves to sleep refuses to set foot on her bed until bedtime.

21. The child who can recite books from memory and ‘read’ would rather listen to stories being told by others, whilst the one who can not tell one letter from the other willl not go to bed without taking a book and look through it like he can read.

22. The child who has been walking the longest is actually the slowest when walking.

23. The child whose picture and profile convinced so many to donate old mobile phones so he could get an ipad hardly even looks at it, and the twin whose existance most donators never even knew about, is addicted to the ipad.

24. The child who can draw, colour in and write a few numbers plays with pens and crayons less than the one who simply eats and chews them.

25. After 4 weeks of beautiful weather we finally book a caravan for a holiday…only for the weather forecast to predict a week of rain!

26. You call professsionals up to 4 times in one day but the minute you leave the house for 5 minutes you miss thier return call.

27. You stock up on thier favourite snacks only for them to suddenly go off them now.

28. The child who relies heavily on a dummy (pacifier) to go to sleep chews them and destroys them daily whilst the child who could now go without treasures hers for dear life.

29. The child with the longest, tuggiest hair is more than happy to get it washed but the child with barely any hair freaks at the very sight of shampoo.

30. You finally get the time to fit those blackout blinds…in the middle of winter!

and to end…

31. A few months ago I attended a course to help parents get thier children to sleep at night. But it was very poorly attended…as several parents said they were too tired to come!

 

It is good to laugh and even in the midst of daily tests a little look at the irony of life can put a smile on your face. You would hardly believe these two kids are related never mind twins.

And talking of twins…if I had money for everytime someone has asked me if my twins are identical I would be a very rich woman. They are a boy and a girl! I was even once asked if being twins meant they were related to each other! But the best one of all was the person who genuinely asked if being twins would make them uncle and aunts?

Life sure can be funny at times…

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Laughing at Life

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I put my little boy to bed tonight and put the monitor on. His room was dark and the house was quiet. He can not yet speak a single word and this last week he has been covered in chicken pox, but when I came downstairs my whole house was filled with the sound of laughter. Isaac was laughing: loud, contagious and hearty laughs. I ought not to be surprised as his very name means laughter!

When I was pregnant with my twins my husband and myself talked often about names. We had a girl’s name picked early on and when we found out we were having boy/girl twins the search was on for a matching boys name. We read through books of names and discussed various options before settling on Isaac. Naomi and Isaac. Together they mean ‘pleasant’ and ‘laughter’. We thought this sounded heavenly. And they both live up to their names. In the first two years I often joked that I should have renamed them ‘sleepless’ and ‘nights’ though!

But there is something remarkable about hearing Isaac laugh himself to sleep. His laughter is my therapy. While he is laughing I am downstairs reading yet another report about him. A report listing his ‘problems’ his ‘concerns’ his ‘difficulties’, his ‘challenges’. Tonights report is about how he requires specialist provision for his up and coming transition to school in August. It is not easy to read and will then be filed in a metal filing box rapidly filling up even though he is only 4. He has what they call ‘severe and complex needs’ but these people need to hear my boy laugh like he is laughing tonight! No-one knows what he is finding so hilarious but it is catching. I look over to my husband quietly reading, enjoying some well earned relaxation, and he is smiling too. If only I could record this laughter to let you hear it. I would love to see you smile too.

I have decided I need to laugh more too. I have been through so much in life that I don’t find at all funny but I can now think of funny moments during those hard times.

My dad died over 11 years ago when he quite suddenly found out he had cancer.He was working one day and 4 weeks later died.He was only in his forties. But I can think tonight of a very funny memory of him sitting sewing buttons onto one of his work shirts and proudly holding the shirt up for us all to see, only for all the buttons to fall off onto the floor! He had missed the holes every time he was threading. Boy did the whole family laugh that night.

I didn’t find it funny when my twins were first born and I was utterly sleep deprived and found it hard to function. But then I think of a funny moment when my health visitor visited and I was crying changing my daughters nappy because I thought she has lost a vital bit and he pointed out it was Naomi I was changing and not her brother! I laughed at that one for weeks.

And then there’s the funny things children says all the time. Today’s one from my daughter was “if you can’t think of things mummy and your brain doesn’t work then you need to change your batteries!” And one time my mum caught my younger brother laughing when he was a child and when asked what he was laughing at he said “I’ve just told myself a joke I didn’t know!”

So here I am thinking of all these funny things and I still have this report in front of me. And then I see a line in the midst of a very serious report that reads “Isaac tolerates his parents”. At any other time I would be questioning what this meant, what is implied by this or even being annoyed at such a silly statement but tonight I am going to take a leaf out of my disabled son’s book of life and laugh at these four words written in the midst of this otherwise depressing and serious report.

They’ll be plenty of time for tears later but for tonight I’m just going to laugh at life and enjoy the journey. I hope you have laughed a little with me.