I just need some breathing space

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I keep looking him in the face while I make that phone call. Answering machine again. 20 minutes later I call again and yet again it is just the same. How many messages should I leave? How desperate should I sound? Is there a point at which you push too much for respite and give the impression you don’t love your child anymore?

School finished for the long summer holidays two and a half weeks ago. 18 days ago to be precise. I make out on social media we are having a wonderful time. For 7 of those days we were on holiday in a cottage in the middle of nowhere. I post photographs of my children playing with gran’s dog, going on trips by train, playing with toy trains and toy food and going on walks. We come back and I post about days out, more train trips and fun in the garden. I make out that everything is ok. Because I feel I need to. No parent wants to admit they are struggling. I want to enjoy having my children at home full time. I want to make memories and do lovely things together. This is my daughters last summer before starting full-time education and I want her to remember this summer. We have had lovely weather and there is so much we could do as a family.

But 18 days in and I can hardly keep my eyes open during the day. Two nights in a row of being up through the night with my daughter having continuous nose bleeds. The trying to do everything in silence to avoid waking her brother, but not succeeding. And every day Isaac being awake before 5am ( and awake during the night too) even when we have had a full on day of activities the day before. Everyday Isaac screaming for mashed potato and gravy at 6am and hitting me with the gravy jug because I said no. Then being hit on the face with the iPad because he has pressed on google but you have no idea what he wants to look at (google images is his current ‘thing’), only to have it thrown back at you because that wasn’t what he wanted. Everyday Isaac wanting pushed on a swing in the park for hours, the constant trying to escape every time the door is opened or unlocked, the constant spilling of any liquid he happens to see because he likes the sensory feeling of water, the continuous turning on of taps and flushing the toilet non stop, the endless screaming, the knocking things down to hear the noise all the time, the opening of the fridge and freezer and helping himself, the biting, self stimulating and banging on the table to demand more food yet again. The effect all of this is having on his sister, on my husband, and on me is showing. 18 days in and the cracks are starting to appear.

He needs the routine and stimulation of school. We need the break.

My mum is doing what she can to help but at almost 70 she isn’t able to lift Isaac or restrain him. And Isaac is the same in her house as he is at home. Nothing is secure. The dog’s water and food is tipped up onto the floor within seconds of his arrival. He is up at the table wanting food even when he has just been fed. He has the dogs toys tipped out and thrown around before we have even closed the front door. He is like a tornado that never ends. He has mastered how to open her back garden gate. And he finds all this hilarious.

We have to keep him occupied constantly. He can not play with toys, or sit for more than a minute or even watch TV. He walks over and breaks anything his sister is playing with. He wants to sit in a ball pool of toy food by seconds later he has the entire box of toy food strewn all over the living room floor. When he has a bath the bathroom floor gets as wet as he does. And he pours into his bath any cosmetics he can get his hands on. The taller he gets the more things he can reach. If his hands can’t open it he just chews it until it opens. He turns the taps on constantly. He won’t even stay still for a nappy change.

Before the holidays we were getting 3 hours respite a fortnight. It was like gold dust. It enabled me to get to church and hear a service, something I hadn’t done in 5 and a half years. I had time for a cup of tea and a brief chat with friends afterwards before having to pick the children up. I haven’t been in a church service since the last time they had respite. I miss that so much. So I keep calling.

We get so fed up getting messed around that finally one morning we put the children in the car and drive to the summer respite centre we were promised a place in. I feel a failure as I press that buzzer with tears in my eyes yet ears still hurting from the screaming my son is doing even at that exact time. I am having to phyically restrain him. He can see swings across the road. I ought to be taking him there not to some strange building he hasn’t been in before. And Naomi’s hands are out in front of her showing how scared and worried she is. Before she cries I pick her up and hold her. What sort of mother stands outside a centre on a warm summers day hoping to persuade strangers to look after my son? I feel sick but I know we have to do this.

They let us in. The children already inside are settled, happy and silent? I’m sure we have come to the wrong place. Apparently not. We register Isaac but hear how despite the fact we have a set of twins born just one minute apart, despite the fact they both have a diagnosis of autism, they are only able to take one of them; Isaac. I hope they didn’t see the relief on my face when they said he could come for two days every week for the next three weeks. 6 days, 5 hours each day of breathing space.

I hope that is enough to save my marriage. I hope it is enough to give my daughter some valuable time alone with us before she starts school. I hope they look after him.

My heart is broken that I have had to admit I am struggling. I keep telling myself he has to have one to one at all times at school even in a special needs school. I try to remind myself this is not a parenting fail but rather a child with severe and complex needs who still can not speak and isn’t toilet trained. My mind knows my whole family needs this breathing space even though my heart is broken at having to hand my son in to respite.

I love him so much. I just need some breathing space.

summer2014

 

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Sometimes autism wins…

You can turn anything into a positive if you try hard enough. But however you look at it, somedays autism wins.

For example it was so easy to pack my sons clothes for a holiday as all he will wear is his red school jumpers. I can even joke that he is saving me money buying him holiday clothes. I laugh about the fact he is slowly turning those jumpers into pull overs as he eats his way up the sleeves. But that joking hides the sorrow in my heart that every time I see him in that school jumper I realise that once again autism has won. If you were scoring the days then before anyone has even had breakfast in my house it is clear that autism is on the winning side. I have to choose my battles. And right now this one is just beating me. So I turn it into a positive. Autism might win the battle, but one day I might win the war. And if I can get him to do more things, be a little more flexible during the day, or wait without screaming then autism can win the red jumper for another day.

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You get used to pushing a stroller around and you actually forget sometimes that the ‘baby’ is actually almost 6, until someone looks at you like you have horns in your head. Hey, I say to people, having a buggy makes carrying bags much easier as you can hook them over the handle bars. Pushing a buggy gives you something to lean on when you are tired, and stops you having to drag a child along kicking and screaming. I have to dwell on the positive. Because the fact that this week I took both children on a train ride into a city centre and had to put both my five year olds into buggies in order to achieve anything could really get me down. It is another sign that this week autism won. It was the only way my family could go anywhere safely. It was the only way the children could cope with the noises, crowds, walking distance and strange smells. It made boarding and alighting the trains very hard, it made getting over the bridge to the other side to get the car like a mountaineering expedition, and it filled the car boot before we even tried to get a bag in. But although autism won, it was actually a win for us as we managed a day trip out and we all had a good day.

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So we tried to go out again. This time we tried a farm. One child loved it. The other lasted a few minutes before having to be carried back to the car. Autism prevented me even getting pics of the child who was loving it.

We moved on to an indoor adventure centre. One loved the toy shop and wanted something from the cafe. The other was so preoccupied with the lift and automatic doors that one parent missed out yet again. Sometimes autism wins…

We’d packed a picnic so we found a lovely park by a castle to sit on a bench and eat. One was so excited. The other could see a macdonalds at the bottom of the hill and that was the end of that. Why would anyone eat cold sandwiches and fruit when there are hot fries and nuggets at the bottom of the hill? It seems at times like this we are fast losing the war. So many battles…which ones to fight, which ones do we just ride out?

Never judge a war based only on what you see at first glance. It might seem like autism is winning but in actual fact we are making progress.

This week the children have both thrown toys for granny’s dog. They have played with and interacted with something other than ipads and trains.

We have had fish and chips outside watching ducks at a pond.

We have been for walks and seen sheep and cows as a family.

We have even managed to eat out at a buffet restaurant.

One of the children ate chips for the very first time.

We are not allowing autism to keep us at home during the summer holidays.

Autism, you might think you are winning because the children are still in nappies. You might think you are winning because one still can’t talk. You might think you are winning when we abandon plans and try something else. You might think you have won the war because we let the boy wear a red jumper everyday.

But don’t be fooled autism…

Sometimes autism wins…

And sometimes we laugh and smile and have fun like it never even exists. It’s all about being in it for the long hall. The war isn’t over yet…and the summer holidays have only been going for a week!

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We went on holiday…and autism came too!

Ah, holiday time. Time to get away from all the stresses in life, chill out, relax and get away from it all. Ermmm…I am a parent carer of two children with autism so I went on holiday..and autism came too. Very few people would dream of taking thier full-time work on holiday with them but I had no choice. There is no respite breaks and no other family came with us to allow us time away from the 24 hour needs of the children. There was no holiday from sleepless nights, 4 am rises, sensory issues, communication difficulties and obsessions.

But we had a great time and made great memories. And I treasure time spent with my children however hard and challenging it is at times. And it really was a break from constant visits and appointments with professsionals, dealing with letters and daily phone calls and chasing up never ending referrals and such like. For 7 days we were not fighting for our childrens rights, not doing some sort of therapy or other with them, not preparing them for the next visit or appointment or filling in any paperwork about thier ever changing needs. For 7 days we were just mum and dad. And that was a holiday enough.

We had to choose our holiday carefully though. After all autism was coming too. No loud evening entertainment, no waiting on planes or trains, no visits to theme parks with loud noise and flashing lights to trigger seizures. No sailing or open seas for Isaac to dive into, no hotels full of people to complain about his sceaming. Nowhere too isolated in case of medical emergencies (Isaac has pica where everything goes into his mouth, seizures that could at any time requiring medical care and tumours, so we always google the nearest hospital anywhere we go) but nowhere too busy that crowds and noise would be an issue. Oh, and even for 7 days Isaac would still require his own bedroom. So we settled on a quiet caravan park…well, quiet until we arrived that is! It is one of lifes ironies that my children do not tolerate loud noise but yet their screams can be heard for miles around!

So what is the first thing you do when you arrive at the caravan? Put the kettel on? Unpack? Have a good nosey around? No when you have autsim you might do what Isaac did…lick the caravan!

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And as you can see he had flags with him too. His current fixation is things on sticks. Lollypops, icelollies, flags (especially flags!) and umbrellas. It all goes hand in hand with his utter fixation with straight lines. So you can only imagine his absolute excitement and joy when we drove up to the caravan to see it had decking…rows and rows of neat straight lines. Boy, he could have spend the entire week on that decking come rain or shine. It really is one of the delights of this child that something so simple, something we would hardly even notice can bring him such joy and amazement. It is one of the most enteering aspects of his autism/learning disabilities and neurofibromatosis type 1 that for all his difficulties, he can actually at times be so easily entertained.

He sat like this for hours, cuddling his favourite blanket and running his hands along those beautiful and fixating lines. Who needs kids clubs and expensive enterainment?

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He walked up and down that decking with flags:

ImageAnd with an umbrella:ImageWhile his sister read her books over and over and over:

Imageand played with her trains in the exact same way she always does:

ImageBecause you don’t get a holiday from autism. You go on holiday…and autism comes too!

But we went swimming, we ate out (ok so mcdonalds and pizza hut and a fish supper at the beach count right?), we went to soft play, we went shopping and we even went to the local police station!

Yes, my anxious and sensitive daughter got very upset when we went to a local swing park and found an abandoned cuddly toy dog. She creid bucket loads at the thought of this poor dog being left out in the wet and cold at night without a child to cuddle it and she was equally insistant that the ‘rules’ are you must never take anything that isn’t yours. So mum’s solution was a little trip to the local police station where a kind and perplexed policeman was happy to reasure my tearful daughter that they were well used to looking after dogs (I am pretty sure he meant real ones but don’t tell her that) and that lost little puppies were usually claimed very quickly. It might have been nothing for that policeman but boy have we heard the story of the lost puppy in the park over and over and over…mummy does it have a little girl or boy yet? mummy can you hear it barking? mummy how sad it would have been if I didn’t find it? 

Yip, autism came on holiday!

And autism came home with us too. And it screamed when we came in the door. It seams they preferred going back to the caravan than a house full of toys. Or maybe my boy missed that decking and it’s awesome straight lines? Or the life size plastic ice-creams outside shops that he screamed and strectched his hand out for everytime we passed them (perhaps the seaside has it’s diasadvantages after all!). Or maybe they just liked us being mum and dad for 7 days. But most of all I think they just miss being children and not being constantly talked about, dragged to appointments, watched and assessed and having to perform and work with people or thier agenda all the time. Sometimes it is nice to just sit down, cuddle your favourite blanket, suck a pacifier and watch a dvd. After all even autism needs a holiday! 

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(P.S. Don’t ask the kids about their holiday. Isaac is non verbal and Naomi will only tell you about the night she had a nose bleed, the nightmare she had about a cow coming into her room and that story about the lost puppy at the park! She might also tell you about the fact she was in a magazine too which is also true but she won’t belive you if you tell her you have seen it as she only thinks it was in a magazine at the seaside! For those of you in the UK her story appeared in take a break magazine this week)

 

 

 

 

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!

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