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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Because a disabled child is a disabled family…

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Firstly, I want to stress that I am blessed. But secondly I also want to say that I still struggle.

I struggle with everyday things like taking my children out, buying food when we need it, cooking a meal, juggling hospital appointments with picking up children from school and nursery, dealing with the piles of paperwork and phone calls that have to be made whist functioning on just a few hours sleep, and trying to give both my children the time and attention they need.

My children are both disabled and therefore my entire family is disabled. That may seem a strange thing to say so let me explain what I mean.

This week my children have had some time off again for a holiday weekend. Like parents around the world I want to spend time with my children and enjoy them while they are young. The weather was not in our favour one afternoon so I thought I would do some basic baking with them. They are both 5. One is at school and the other nursery. How hard can it possibly be to make some chocolate crispy cakes?

Nothing is easy when you have a disabled child. My daughter was super excited about baking. My son could see it was something to do with food when the cereal packet came out the cupboard but that was all he understood. I explained the process to them using photographs (google is my friend) and we filled a mixing bowl with some cereal. And then everything went rather crazy after that! Because his sister had poured cereal into a mixing bowl and not a cereal bowl; because she wasn’t sitting at the table to eat breakfast like he expected from seeing the cereal out; because he had no idea what we were doing. So he lashed out. He screamed, bit himself, banged his head on the floor and threw everything about he could get his hands on. What should have been an enjoyable family activity was now becoming yet another casualty of my sons disability. Once again his disability was spilling into the entire family. My daughter could not continue baking, I could no longer give her attention or help and my son was seriously struggling. In the end Naomi made the quickest crispy cakes ever and Isaac sat and ate a bowl of cereal with some chocolate drops in. I made the mistake of trying to drop some melted chocolate in for him. Never again! The photo shows a smiling girl with a cake. But you just don’t know what else went on that day just to achieve that. One disabled child not coping and the entire family struggles.

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Then there was a 9am appointment for one of the children. That is quite common for us. Appointments in general are so common it is rare to have a day without one. But certain times make negotiating the logistics of family life a real challenge. How do you get one to an appointment and back to school 13 miles away and the other to nursery a mile in the opposite direction at the same time? Any family having to juggle hospital, clinic and therapy appointments with other siblings, work commitments and family life knows this dilemma. The disability of one child has a huge knock on effect on the others children and the parents. So often parents of disabled children are unable to continue working because the level of commitment needed to attend these things impacts on working life so much. A disabled child becomes a disabled family.

Then there’s the places you just can’t go to because your child is disabled. Yes more and more places are wheelchair accessible but that doesn’t make them autism accessible, or suitable to take an ill child or a child prone to seizures or public outbursts. Or even make them safe for a child with developmental delays or the ability to escape within seconds. As my children grow the list of places I can take them both to gets smaller. Holidays make that worse as everywhere is busy, noisy and unpredictable. Taking them to the local grocery store just to pick up basics takes military planning, praying the one (yes you read that right just one) disabled trolley is available, the music isn’t too loud, the layout has not been changed and the checkouts are not too long. I can’t just tell my children to follow me, or hold their hands or ask them to help. Picking up a pint of milk is as hard as an army assault course when 9 months pregnant! It is exhausting. One disabled child is all it takes for an entire family to be affected.

Emotionally disability affects everyone too. Parents worrying about test results, operations, high temperatures, infections, the next therapy sessions, the fight for the right services, the concerns about the future. Brothers and sisters torn between wanting time with their parents to support them whilst realising that far more attention has to be on their sibling. Children often becoming young carers long before they should have any real responsibility. Young ears hearing things that no child should have to hear simply because there was no child care to go to and so once again they had to ‘tag along’. Children seeing adults cry and not knowing how to cope with this weight. Brothers and sisters coping with their toys and valued possessions being destroyed by a sibling who never seems to get told off, or who doesn’t seem to care. Children afraid to tell their parents they are being bullied because they don’t want to add to the already heavy burden that their parents are coping with, or worried about asking for money for a school trip because they know money is tight, or even struggling with feelings of resentment towards all the attention the disabled sibling seems to get. That balance is often impossible for parents of disabled children to get right. Whilst one child might be registered disabled, emotionally everyone in the family is disabled too.

One child wakes up screaming and often the whole family gets little sleep. One child is sick at the dinner table or throws the meal across the room and no-one gets to enjoy a meal. One child refuses to go to school or wear the uniform, every child is late as a result. It is a ripple effect.

We need to support disabled children. We need to continue to spread awareness of disability in all it’s forms and continue to invest in services, therapies and medical equipment. But we also need to remember the parents and the brothers and sisters too who live disability on a daily basis. They might look fine but remember…a disabled child is in fact a disabled family. And they ALL need our prayers and support. Thank you!

A special needs Christmas carol

God bless ye precious families
Let nothing you dismay
Remember that our special kids
Might scream on Christmas day
To save you from those children’s tears
Keep receipts for all those toys
O I’m longing for comfort and joy, comfort and joy
I’m longing for comfort and joy.

In lots of towns and lots of rooms
They’ll be strange dinners made
Cos lots of children can not eat
The turkey that’s been laid
So just make chips and nuggets now
To keep your happy boy
Or you’ll never see that comfort and joy, comfort and joy
You’ll never see that comfort and joy.

From God our heavenly Father
Our blessed children came
But he now needs to give us patience
So we can all stay sane
The lights he broke, the baubles smashed
The tree he did destroy
And now I’ve lost my comfort and joy, comfort and joy
Now I’ve lost my comfort and joy.

Fear not said all the family
It’s just the time of year
It’s just because you spoil him
That iPad was too dear
But they don’t hear his high demand
It’s all that he’ll enjoy
But we still sing of comfort and joy, comfort and joy
We still sing of comfort and joy.

The schools are closed for Christmas break
The teachers need a rest
So we’re left caring day and night
But still I say we’re blessed
Lot’s more hugs and kisses too
Times with my girl and boy
And that will bring me comfort and joy, comfort and joy
And that will bring me comfort and joy.

And when it comes to holidays
I need you all to see
Our special kids might be the ones
Who are up in A and E
I’m grateful for the NHS
And all who they employ
To help us spread the comfort and joy, comfort and joy
To help us spread the comfort and joy.

Now to the Lord sing praises
Our children are still here
And with true love and brotherhood
We face another year
So from us all at Christmas time
I hope you all enjoy
Good tidings of comfort and joy, comfort and joy
Good tidings of comfort and joy.

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