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…

Give me time…

I am a great believer in that one of the best things you can give anyone is time.

Time is a gift that is irreplacable. Life passes by so quickly and children grow up in the blink of an eye, but thier most precious memories will be of time spent with loved ones and our most precious memories will be of all the things we did with them.

But the reality of life is we have so much pressure on our time. I only have two children and I am a stay at home mum/carer but yet my time is in so much demand. The children need to be at nursery on time, they need picked up on time, hospital appointments, finding time for family and friends, keeping the house clean and tidy, time to cut the grass and tidy the garden, cooking, shopping, filling in forms and keeping up with paperwork. But my children want my time and my daughter is constantly saying ‘play with me mummy’ and my son screaming for attention. And in the priorities that compound me each day I need to give them that time.

I have been taking the time this week to complete some paperwork on my son for his transition to school in just 4 weeks time. He has classic autism, neurofibromatosis type 1 and global delay. At present he is non verbal. So I am completeing a booklet entitiled his ‘communication passport’ to give the school as much insight into Isaac as I can. And in doing this I have come to realise that Isaac needs so much extra time. Yes, he clearly needs extra time and support to meet milestones other children take for granted and extra time to adjust to new settings and people. But most of all he needs extra processing time.

When I say he struggles with transitions I do not just mean he struggles with moving from nursery to school or going into a new hospital room to be examined. Isaac struggles with the simplest transition like being asked to come to the kitchen table and eat a meal. He knows the food is infront of him, and he knows it is time to eat but give him time to process all that information. He will make noises, flap, look around and generally look like he has no idea why he is there but this is his way of taking in and processing what is required and where he is. So I am asking the school to give him time.

And if you give him time he can amaze you! Last week he carried the same book around with him for days. He even took it to bed, on the nursery bus and in the car. He turned the pages, stared at it for ages and scanned the edges across his eyes. But he was processing something. One day he sat on the couuch and stared intensly at the same page for almost 10 minutes. And then he screamed. When I went over and asked ‘what do you want Isaac?’ he grabbed my hand and put it on this page:

‘You want ice-cream Isaac?’ This was the first time EVER he has used a picture to communicate a want! He ran to the freezer. So the first ice-cream I offfered was pushed away and then I re-looked at the picture and put a chocolate flake like he had seen in the book. And he took it and smiled. It was way closer to dinner than I would have prefered for having ice-cream but I just HAD to reward that communication. He had just needed extra time to make the connections. So perhaps I should be telling him it is bedtime an hour or two before the event? I might need to try that one!

Both my twins are really pushing the boundaries just now with temper and tantrums. Some days I feel I am correcting them, sending them to the naughty step and dealing with screaming all day. Even given thier challenges there are times when they are both just being naughty. But disipline takes time. If they seem a bit selfish, a bit grumpy, very loud and screamy or you see my son banging his head off the nearest surface in temper, bear with me. I am on it. I am training them. But please…give me time! Give them time to be children and give me time to correct naughty behaviour. Children are not born little angels and learning right from wrong takes a very long time. Even us adults could do with time on the naughty step to think some days!

Time is a great healer. Time can bring answers and results and restore lost confidence.

Naomi still isn’t talking in nursery. And she still really struggles with anxiety. But she is slowly gaining more and more confidence. She recently let me video her reading a book. And she loves watching herself back. If you speak to her at first she will blank you because of her anxiety. But take the time to get to know her and she will eventually whisper to you and then talk. Be patient. I really believe in time she will speak publicly. That is one of the reasons why we have kept her in nursery another year. She just needs a little extra time to gain confidence and skills that others take for granted. Her toileting will come in time too. She had a bladder and bowel scan this week and hopefully the results will help us know where to go from here. But it all takes time.

So I’m thinking of getting my kids some t-shirts with ‘give me time’ printed on them. I could really do with one too!

The world is so fast paced. Seasons and times change so quickly. So take the time to enjoy your family and friends. Take the time to enjoy life. Judge less and give people time. But most of all give your children time. Time to be children, time to play and time to enjoy life.

I really hope you have the time to listen to Naomi read to you. It has taken her such a long time to get the confidence to do this. Enjoy ‘Shaggy dog and the terrible itch’. I have enjoyed reading it to her so many times!

“It’s not your fault”

“It’s ok. It’s not your fault”, said the medical paediatrician on the phone to me today. The tears welling up in the back of my eyes dripped down my face as she had no idea just how much I needed to hear those four words: It’s not your fault.

I had called her yesterday as over the last five days my precious boy was fast disappearing in front of my eyes. We had went from one extreme to the other of him not sleeping for as long as 19 hours at once to him wanting to sleep pretty much all day and all night. Last week he started a ‘medicine’ (it came from a pharmacy but in actual fact is better described as a supplement) called melatonin and although on the first night of taking it he was still awake at 3am by night three he was not only sleeping through the night but wanting to sleep all day as well! I admit the first full nights sleep in 4 years and 8 months was wonderful but there is something deeply worrying when your active, energetic and demanding 4 year old suddenly has no interest in food or life and won’t even try and get out his buggy. I was so concerned I called the hospital and was so relieved when the paediatrician called me back.

It turns out both she and myself had both been busy the last few days. While I had been spending time completing Isaac’s disability living allowance renewal (no less than 42 pages of total negativity of all the things my son can’t do and all the things wrong with him) she had been speaking to lots of people involved with us and trying to secure better services for us.

She had only met Isaac once as she had taken on his case from another paediatrician who was unable to see Isaac as often as he required as her caseload was so heavy. But in that short time she got a good picture of how Isaac is and she had already read his medical and case history and had an ear ready to listen. And listen she did. That was what she could hear over Isaac screaming and crying so loudly. She even allowed him to climb onto her table and pull down a calendar from her wall and sit in his buggy scanning the corners and straight lines just so she could listen to us. That was going above and beyond the call of duty already in my eyes. She showed concern and empathy when she heard how little sleep we were all getting so suggested we try melatonin. We had to try something.

So here we are having giving our son this so called miracle sleep drug and now we seem to be losing him to a sub conscious state that filled me with guilt and dread. I was even promising myself I would never again complain about his 3am parties, his climbing and sitting at the windowsills, his endless flapping, his screaming and the licking of everything in sight. I just want my boy back!

“It’s not your fault” she said. So we will alter the medication. We misjudged how much he needed.

The climbing and sitting at the windowsills: It’s not your fault. She had spoken to the social worker who had told us we had to stop him doing it. The one who implied we were being irresponsible. (see my previous blog “I’m sorry I’m failing you my son”) The paed had seen the video and saw how happy he was. She told the social worker that Isaac will never understand the dangers involved and he will crave the feedback and sensory input he gets from sitting there, so social work have to make it safe for him.

The fact he is still non verbal: This isn’t your fault! I know you are doing everything you can to help his communication. You have another child who speaks fluently. You are doing nothing wrong. Mrs Gwynne, your son has classic autism. He has a neurological disability. The pathways in his brain do not function properly. None of this is your fault.

He is still fully incontinent and this is not your fault. He is severely developmentally delayed but that is no-one’s fault. He may or may not learn this skill in time but do not torture yourself trying to toilet train him. Don’t worry.

I have stressed to occupational therapy that the fact you have not received the promised aids is not good enough. I am not at all happy that any family has had to go through this and I fully expect them to get this sorted urgently for you.

I understand you are now seeing the specialist occupational therapist regarding your children’s sensory needs. Good. This can only help.

Although I am not dealing with your daughter I am aware she has bladder and bowel issues and social and communication difficulties. Can I stress none of this is your fault.

She kept stressing It’s not my fault. And the tears kept falling.

There is healing in tears. And there is also Godly timing.

And talking of Godly timing I was thinking out loud of who would be best to complete the section on Isaac disability form (someone who knows him) having listed no less than 16 professionals who see him on a regular basis, when I hear knocking at the back door and in comes the health visitor. The ‘book’ that is DLA and the reports that are being sent in with it can now all be sent back within 7 days of it being received. Ah, now there’s the silver lining in all this sleepiness that Isaac has had. I would never have had the energy to face such a form never mind complete it so thoroughly on the little sleep we had up until last week.

My children both have autism and other issues. But as this wonderful paediatrician reminded me this week this isn’t my fault. Are your children struggling with illness, behaviour, education or personal issues? It isn’t your fault! Did your marriage fail or your house get repossessed? Did you lose your job or get ill? It isn’t your fault!

We are human. We do our best. And sometimes things don’t turn out as we want them to. But that isn’t our fault. It is life. Do your best. And let God do the rest. And keep believing for that miracle and Godly timing. And enjoy sleep when you get it!

If you burst my bubble I will cry

So it’s the summer holidays here and all the schools are off. Except my children are still going to nursery as usual. They need their routine, I need the break. And it keeps all our sanity intact.

But other than nursery we are staying away from people and places as much as possible. We haven’t been swimming, or soft play or to any of our usual places much (unless they are autism related) since the schools broke up. Everywhere is busy, noisy, and full of ‘normal’ children. The kids can’t cope with the noise or the amount of people and I can’t cope with my little bubble of life being burst by seeing ‘normal’ children and families or else I cry.

Seeing children climbing soft play equipment and not chewing the wire safety surround. Seeing all the children in church sing songs on the stage and doing all the actions without thought. Watching children in parks on see-saws and roundabouts laughing and playing with friends. It is all too much of a contrast to the life my family is leading and it bursts my little bubble and makes me cry. So for now, the four of us just get on with appointments, nursery, family and playing in the garden. And attending things that are special needs specific only. It’s all any of us can cope with so it is as it is.

If I take my kids to soft play one refuses to ever go on the equipment and instead sits at the table with mum and dad watching all the others. She can’t climb or crawl and is frightened of other kids. Add the fact she hates walking without shoes on due to her sensory preferences and you can pretty much forget soft play. The other can climb but has no awareness of other kids so pushes them out his way, bites them or climbs over them. Then he forms a circuit on the equipment and simply repeats the same circle over and over and over and over, only stopping to chew the wire safety surround, stare into space for minutes at a time or flap his hands and arms. He has no interest in the other children and neither looks at them nor cares what they are doing. If they block him he squeals at them until they move. He sticks out like a sore thumb. He gets called names, laughed at, picked on and pushed. Young children bursting my bubble and making me cry. So the only soft play we go to now is an autism group one. Even there he is different. But so are all the other kids. And most of the other kids have little interest in what he is doing. And all the parents think it is there child when a tannoy says one of the children is running around naked!

So the only non-autistic place we go to every week is church. And right now church is very very hard. They keep bursting my bubble and making me cry. They don’t mean to but the older my children get the more obvious their disabilities have become. Both my children should have moved on from creche to sunday school 18 months ago but both are still in creche with the babies. In Sunday school you sit down and listen to stories, you do crafts and play games and sing songs. Isaac can not talk or sing, or play games or hold a pencil, or follow instructions, or sit down long enough to hear a story. So Sunday school is totally unsuitable. Naomi says the singing is too loud it hurts her ears, she refuses to talk or join in games and is highly anxious and upset all the time. And she isn’t toilet trained. But the other children in the church keep growing up and moving on to Sunday school and my bubble keeps bursting! Two weeks ago all the sunday school children were up on the stage at church singing songs and doing actions and praising God. Children a year and a half younger than my twins singing to a crowd of almost 200 people, happy and excited to be showing what they have been practicing for weeks. I was so glad that Isaac was having a very bad day (in fact a very bad weekend if truth be told) and we could get our bags and go home. My bubble was well and truly burst that morning. I just could not pretend my children were normal any more. They should have been up on that stage with the other children. But I don’t know if either of them ever will.

It is exactly the same when we go to parks. Isaac only wants to find a bush to run along side and look at out the corner of his eyes. And Naomi only goes on the swing. The baby one at that. She is afraid to go on a seesaw, gets dizzy on a roundabout, thinks slides are too high and isn’t able to climb on anything. So pretty pointless taking her to the park then! And if the other children run about she thinks they will knock her over or bully her. Meanwhile her brother has escaped somewhere. No, the garden is a much safer place to be!

Being a parent of special needs children is very isolating at times. Even more so when everywhere is noisy and busy and there are queues wherever you go. But one advantage of doing things with just the four of us is that I can let my children be who they are without people staring, or children laughing at them, or others complaining. They are accepted and loved and made to feel special for what they can do and not excluded for what they can’t do. They need to be in that bubble at times too. Because sadly they will be reminded of their disabilities all too often from the world. For my daughter who has high anxiety and low self esteem already spending a summer in a bubble surrounded by only family, friends, or other special needs families will do her far more good than harm. She needs to hear encouragement, friendly voices, cheering, laughter, love and support. Her mainstream nursery provide this, creche at church provides this and family and friends give her this. But busy soft plays and parks and sunday schools full of children all out of nappies and running around just make her feel inadequate and unable. It bursts her bubble and makes her cry.

And as for Isaac, as long as he gets to run alongside a hedge or fence back and forth as often as he wants, as long as he gets fed often, has peppa pig to watch and lots of plastic toy food to chew on he will be fine. He has no concept of holidays anyway and is happy with his shoes and socks off all day and the nursery bus coming as usual every morning. His world is simple. He isn’t aware he is different. He just needs his routine like any other day. Don’t burst his bubble by saying it is the holidays and nursery is off. You will only make him cry.

So we’re staying in our wee autism bubble for now. Hallelujah for nursery through the summer. What was that? Summer holidays finish in 6 weeks and my boys starts school? No!!! What did I tell you…don’t burst my bubble or I will cry!