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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“It’s ok, I’ve got you”

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It was a dry and mild spring evening, the sort you want to make the most of and get out of the house. So we packed the kids in the car, the changing bag, a few little toys and grabbed the leftover loaf of bread on the way out to feed the ducks at Lanark Loch. The park at the Loch has recently been rebuilt and we thought the kids might enjoy some time on the swings, climbing frame and slides after feeding the ducks and swans. We ‘thought’ it would be a relaxing evening. We ‘thought’ we could enjoy some quality family time together. We thought it would be ok. I never for a minute thought I would be writing about that evening days later with the emotions of it all still raw in my mind.

Naomi loved feeding the various animals and was so excited as they approached her eager to enjoy the food she was providing them. Isaac had other plans. So we did what we so often have to do in these situations and resorted to our tried and tested method of parenting these days “divide and conquer”. One parent takes the daughter and the other the son. A simple smile and nod to my ever understanding husband and he recognised the cue that I was heading off with Isaac, hopefully to the swing park. Never try and second guess someone with autism! Unpredictability should be their middle name!

It never occurred to me to check I had the essentials all special needs parents must carry at all times. In our case a watch, the car keys and a mobile phone! As I chased after my flapping, wobbling, vocal four year old who has an absolute love of water my first thoughts were along the lines of ‘will he keep his clothes on today’, ‘how deep is that water?’ and ‘even the swans have got the right idea to get out of his way!’.

But he never headed for the water. He was setting off around the loch following the path of so many dog walkers, romantic couples and runners before him. His eyes were squinted at the edge of the bushes tracking their path as they steered right around the waters edge. Totally in his own world. Totally oblivious to anyone around him. Just engrossed in an imaginary line that only he seemed able to see. I could certainly benefit from the exercise and had no choice but to follow this fascinating child who was off exploring.

He was looking at the bushes. Mum was looking out for obstacles at his feet, uneven tracks that he would never notice with eyes fixated on a peripheral imaginary line only seen by him. I was apologising to fellow walkers approaching in the opposite direction assuming this little one would move out of the way of their dog, pram or running path. But Isaac wasn’t even aware of them as he half walked, half ran in his trance like state. I was saying polite hellos to strangers. My little one more interested in the shrubbery than in people.

As he continued along and I got into his groove my thoughts began to wander as much as he was: ‘Will dad and Naomi have any idea where we are?’ ‘Are they having as much ‘fun’ as me?’ ‘Maybe after all this walking Isaac might actually sleep tonight!’ ‘wow, this place is beautiful. I’m so glad I am getting to see so much more of this place tonight.’

And then he suddenly stopped dead in his tracks! Why, I have no idea. And he screamed this ear piercing scream, a broken-hearted, confused, disorientated look on his face. And real tears. He can’t talk but his face said it all. He finally knew I was there. And he needed me. He had just walked half a mile (.75 km) in an absolute trance and suddenly reality hit and he had no clue where he was and how he got there.

“It’s ok, I’ve got you”

Half a mile is easy to walk in the cool of an evening with only the weight of your own burdens upon you. But with the weight of a 4 and a half year old, a heavy heart and all his disorientated frustrated burdens as well as your own, it is a very long way indeed. And it was right around that time that I suddenly realised I had no phone, no car keys and no watch on. Oh dear. We were alone. But we weren’t.

“It’s ok, I’ve got you”

I kept reassuring him as God was reassuring me of the same thing.

“It’s going to be ok my precious child”

He was hearing me through his tears. And I was listening through my tears too.

“We’ll get through this together.”

He needed to know he wasn’t alone. So did I.

“Look at that duck Isaac! Can you hear that dog bark?”

Sometimes we need to be distracted from our own worries.

We made it back safe and well together. I learnt that night that sometimes we can walk alone in life but at other times we just need held and carried and told by someone “It’s ok. I’ve got you.”

I’m thankful that tomorrow is a new day!

As well as blogging I have been trying to keep a little journal of thankfulness recently. Some days it is very easy to think of plenty to write and other days I have to really dig deep to see the good that has happened that day. But I can now look back at almost a month of written thoughts of thankfulness and I wanted to share some of the things I have been so grateful for and the little tiny seeds of progress that give me hope for a brighter future.

For those of you who haven’t read previous blogs or my history it will make more sense to you to know that I am a mother of 4 and a half year old twins conceived through IVF after a ten year struggle with infertility. Both twins are on the autistic spectrum and one of them is diagnosed severely autistic with global developmental delay, severe learning difficulties and neurofibromatosis type 1. He also has eye problems. Both are still in nappies and one is completely non verbal. During the last month we received difficult news regarding my son’s eye sight, my daughter has been referred for further tests regarding bladder issues and I have been struggling with my own health problems. We are also in a battle with the local authority regarding my sons future education. It is in the midst of all this that I want to share some of my notes on thankfulness. Because it is in the midst of trials that we most need to have hope and stay thankful.

So here are a few excerpts from my thankfulness diary from the last month:

I am thankful for the NHS and for people who choose to work unsociable hours to be able to treat myself and my children.

I am thankful for friends who call, text or e-mail and just say they are thinking of me.

I am thankful I can see my children smile.

I am thankful my son went 24 hours without biting himself today.

I am so thankful my son allowed us to measure his feet in a shoe shop for the first time ever without screaming. This is progress.

I am thankful for a husband who sees all my faults but still chooses to love me and be with me. And thankful that I have a God who is just the same.

I am thankful for the fact my son appears to have good vision out of one eye and has no sign of tumours on that eye either.

I am thankful for transport to be able to make appointments even when we have snow in Spring!

I am thankful to know what is affecting my children and causing them to behave the way they do. Understanding brings knowledge and helps me focus better on how to help them and pray for them.

I am thankful my son said ‘mum’ for the first time. He isn’t saying it consistently yet but it WILL come. Something like this gives me hope.

I am thankful I can hold my children at the start of every day and at the end of every day. Whatever happens in between I can still hold them close and kiss them and whisper “I love you” in their ears.

I am so thankful for my daughter who gets so excited over the little things that others overlook. Her thrill at getting a new dvd makes me thankful for her simplicity and gratitude and love.

I am thankful I got to use the bathroom in peace on one occasion today.

I am thankful for people who have walked similar paths before me and who are willing to guide and help me through challenging times.

I am thankful today for a warm comfortable house, a bed to sleep on and food in my cupboards. 

I am thankful for a God who hears my cries and knows my inmost thoughts.

 

I think being thankful this last month has really helped me cope when things have become challenging at times. On the days when my son screamed for hours, bit himself until he bled and slept for only a few hours. On the days when doctors reports seemed bleak and the children ate very little other than chocolate. On the days when the snow kept falling, the bills kept coming and the pressure seemed immense. On all those days I tried to be thankful. And I then found myself finding a shred of positivity, a glimmer of light and a ray of hope that allowed me to face another day and look at life a little differently. Even if all I could write was:

I’m thankful that tomorrow is a new day!

 

 

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.