Respite is not failure

It is one of the many ironies about having children with additional needs: we fight long and hard for respite but when we do get it we struggle emotionally to accept and embrace it.

Let me get this straight right from the offset: respite is not failure!

The dictionary defines respite as: “a short period of rest or relief from something difficult or unpleasant”

I want to start by saying I do not find my children unpleasant. Neither do I wish to cease being the parent of two special and unique children. But the reality is my life is very intense. My children need so much more extra support just to get through every day, they have far less independent skills than they should for their age and we have more appointments in a month than some families have in years.

Physically it starts to take a toll at times. My son is three-quarters of my height now and a third of my body weight. Yet he is only six. I still have to physically dress him like a baby, support him climbing stairs, change his nappy and dry him after his bath. His behaviour can be physically challenging and his latest ‘game’ of pulling hair until it comes out into his hand is painful. At times he requires restraint and as he has no concept of personal space he thinks nothing of climbing over me or sitting on my knee for a cuddle like a baby. I still need to lift him in and out the bath and sometimes help him onto a chair. He can not even put his own shoes on.

Sometimes, just for a little while, my body needs a rest. Respite enables my body to recover from the difficulties and gain strength to do it all again tomorrow.

Emotionally it takes its toll at times too. Only this morning I found myself walking home from the local school in tears. I spend a few hours there every week volunteering and today I was working in the class of children my son’s age. As they sang to me in French I realised my six-year-old could still not sing the same song to me in English. That has to affect you. While the children talked to me about Egypt I realised that my son can’t even talk to me about his day at school. And the reality is he may never even say his own name. Everyone needs time to cry sometimes but parents of children requiring extra support need that time even more. The pain is raw, real and is right in front of your eyes everyday. The emotional toll of hearing your child cry because no-one plays with them, or dealing with the emotions of someone laughing at your child in public, watching your child harm themselves in frustration, or dealing with professionals who don’t seem to be listening; it all drains you emotionally.

Sometimes, just for a little while, my emotions need a rest. Respite enables my heart to recover from the stress and gain strength to face it all again tomorrow.

It takes its toll on relationships too. I read recently that parents of children with extra support needs are twice as likely to divorce than others. Wether that is true or not I can sure testify that raising special needs children tests your marriage in ways you never thought it would. How do you find quality time for another adult when your children’s needs are 24 hours a day? How can you support someone else when you often struggle yourself? We all deal with stress differently but getting precious time to regroup and discuss things is very rare when you are either dealing directly with your child or attending meetings and appointments to discuss them.

Sometimes, just for a little while, I need time for other relationships. Respite enables me to be a wife, a sister, a daughter and a friend, all of which make me stronger, happier and healthier and help me be a better mum.

I am so blessed to get three hours respite a fortnight. It is the most treasured highlight of my fortnight. It is no exaggeration that it has saved my marriage, restored my physical health and given my emotions time to settle. It is also helping my children learn that others can care for their needs and help them just as much as me.

I need respite. That is not a sign of failure but in fact a sign of success. It shows I know my limits and I am not too proud to admit them. It shows I am willing to let others support me. It shows I am human.

I just need some breathing space

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.

 

So now what?

Have you ever waited for something for a long long time, fought for something until you were weary of fighting, or investing your life in something until it seems like it is all that consumes you? I know lots of us have.

I longed to have my children for 10 very long and seemingly never-ending years. I have fought for both children to recieve their diagnosis. I have fought for my son to receive the right educational environment to thrive. I have fought for basic adaptations to our home to allow my children to fully enjoy all that it has to offer. I have fought for help and support for both my children. And for the last two years I have been fighting for respite.

But with all this fighting, all this striving and pushing and waiting, what do you do when you finally get what you have been waiting for?

My children are here now.

They are now both diagnosed.

My son is in a fantastic school and doing well.

We now have railing and grips on both outside stairs and extra railings on each side of our inside staircase.

Both children have a co-ordinated support plan in place.

And would you believe it…we had a letter this week to say that starting from this weekend BOTH children will be receiving a few hours ‘respite’ each fortnight. Well, they are calling it a Sunday Club (well we would not want them to admit we actually need respite now would we?) but it is the same thing. This Sunday I get a few hours break.

So now what?

If your child has recently started school, or recently been diagnosed, or you have finally got the answer you have been waiting for for a long time it can be a time of real mixed emotions. Relief, delight, satisfaction, and possibly even joy. But it can also bring confusion, emptiness, a whole lot of questions and a feeling of overwhelming emotions. What do I do now? Where do we go from here? Will this be all that I was hoping it would be? How does this change things?

Take time to savour the moment. Take time to digest the news. And whatever emotions that brings, allow those emotions to come to the surface. It really is ok to get excited about a breakthrough. It is also ok to cry when you have finally reached that place you have longed for for years. It is ok to kiss the joiner who finally fitted your bannister because you know that finally your son can climb those stairs to his own room safely (so ok that might be taking things a bit too far but I did hug him)

It is ok to want to know more when your child is diagnosed. It is ok to want to frame that letter that says finally they will be getting the right support they deserve or get to attend the right school. It is ok to want to keep that positive pregnancy test when you have wanted a baby for so long, or want to frame the wedding certificate when getting married has been your life’s dream. It’s ok to hold those new house keys in your hand and have a silent moment of thankfulness.

But when the initial emotions settle and you are thinking what’s next? Now what? What do I do now?

Here’s my advice: Enjoy the rest. Enjoy the not fighting. Enjoy a period of things going good. Let the change settle down. Because if everything was always a fight, always a struggle and always a waiting game we slowly become sick. There will surely be more fights ahead. There will always be things needing doing around the house. There will be something else my children will need as time goes on. There may be things that are not quite right yet. I still need to secure the right support for my daughter starting school. My son is still not speaking. There are always loads of appointments still. I would love another child.

But right now I am savouring the taste of victory. It may only be for a few hours once a fortnight. But whatever they call it…it is respite.

I can actually taste that hot cup of tea…and after 5 years I will get to hear a church service…it’s true what they say ‘a longing fulfilled is a tree of life’

“Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.” Prov 13:12

If you are still waiting for that day of diagnosis, if you are still longing for that baby or husband or new job, if you are still dreaming of that bigger house…keep fighting! Keep believing! Never give up hope!

But celebrate the victories as you go along. Because without the fight you never really appreciate the victory. When I leave my longed for, beautiful, treasured children on Sunday I will give them both a kiss and a hug. And I might just kiss the respite workers too!

What now? Well who’s putting the kettle on?

I’m sorry I’m failing you my son

I’m doing my best son. Honestly.

I’m phoning, writing, applying for things that you might like or that might help you, searching the internet for anything that might encourage your development. You are known to social services, you are known to education, occupational health, your additional support needs nursery, the special school you are going to soon, the health visitor, your genetic support nurse, friends at church, the neighbours. But still I feel I am failing you my son.

I applied in February this year to get a carers assessment and an assessment of your needs completed by social work. I want to help you. It took months for anything to happen but finally the social services sent an occupational therapist out to the house to do an assessment. I know you have no idea who that was when she came son but I asked her to try and help. She came up with some real ideas to support you. She promised me so much son. She was going to get the steps outside painted at the edges so you see them better and don’t fall over and hurt yourself any more. She was going to get a small handrail on the inside stairs so you have support when trying to walk up them rather than crawling. She was going to look into getting something sorted at the windows so you don’t fall out them. Yes, son, I told her you love sitting up and standing up at them. She wasn’t impressed but I begged her to help.

But nothing has happened. The promises came to nothing. She failed us. I’m sorry I failed you my son. But I tried. I really thought they might help us.

Once we got allocated a social worker and they started the assessments I told her everything about you. I told her all about the fight I was in to get you the right school. I told her they wanted you to go to a school with stairs you could not climb, and that you could not cope with having lunch with 200 other children. But she couldn’t help. She didn’t really want to know. She said that fight was with education. They failed you too son. They refused our appeal and turned down our placing request for the local special school. I want you to know son that you now have a brilliant school to go to in August. I know you might never understand what happened but I fought and I fought for you my son. And with the help of strangers you and I might never ever meet we won. I know it will be tough on you having to travel 22 miles back and forth to school every day. I know it will make your day longer than you or I want, but I’m doing my best son. And the authority only have two special schools. The other one was full. This was the best I could do.

I know you are really struggling to communicate son. I have pushed and pushed for speech therapy. I have cried in their office. I have made so many calls to them. But still there is nothing for the 7 weeks school holiday. Apparently everyone needs a holiday they say. But you don’t get a holiday from your frustrations. And I don’t get a holiday from your head banging, screaming and crying. If we went private by the time anything was in place the summer would be over. I’m sorry I am failing you again my son. I’m doing the best I can. I have told them it isn’t good enough for you. But there is a system. That’s what they call it. I know that means nothing to you. You just want help. I do too.

I told the social worker you like to walk outside. I told her the bushes in the street are amazing to you. I told her you like to wander down the dual carriageway at the end of our street. She suggested strongly I need to stop you. She said I must watch you more. That what you are doing is dangerous. I told her I did know that but I only need to turn my back for a second and you are out. She suggested locking the doors and alarming them. She said you need to be a prisoner in your own home. I did tell her all children need fresh air. She just said that if I can’t watch you because I have your sister to watch too then you need strapped in your buggy. I know you hate that. I know that’s why you bite me when I put you in it. You don’t understand the danger of walking up and down a main road with two lanes of fast moving traffic in each direction. You just see we are hurting you and spoiling your fun. And you will just try doing it again the next time, and the time after that. And every opportunity you get. I need to keep you safe son. I’m sorry you might never understand that.

I told her you love sitting up at the window. I explained that you find a way to climb up them no matter what I do to stop you. I told her you now like to stand on the windowsills too. She didn’t look amused but it is very funny for you. I did tell her how funny you find it but she never really understood that. I wish I knew what you find funny too. Perhaps it is the people walking past, or the fun of the chase or the fact you get a different angle on the world. I don’t want to always spoil your fun. I know you have sensory needs that we need to meet. I know it relaxes you. But you really have no idea how stressed it makes me feel. You think it is fun that your window opens. Wow. How cool that you can get to feel fresh air and hear sounds louder from outside. The social worker told me yesterday that as your bedroom window is a fire escape we can’t lock it. And she said new windows cost too much for social services. I am sorry they see the cost of new windows as more than the value of your life son. I don’t make those rules. And apparently it is my fault for letting you climb up there. I don’t think they understand your autism.

In fact I know they don’t. Because I have cried and cried and cried for respite. The latest excuse is that you would have too much change with starting school soon. You would love respite son. They take you to fun places all on your own. You get undivided attention that I can’t give you because you have a twin sister at home. And the people that take you have energy that I don’t have. They get to sleep at night. Yes you would love respite. So would I. But they won’t give us it. I’ve failed you yet again. And I’ve failed your sister because she needs a break too.

I’m sorry that I don’t play with you at midnight and 3 o’clock in the morning when once again you have climbed up at the window or went searching for your favourite toys to chew. I wish I was a robot that didn’t need sleep so I could be there and be bright and energetic at all hours of the day and night like you are. I’m sorry fatigue and exhaustion make me shout at you sometimes. I feel like I am failing you but really I am doing the best I can.

I need to take you to hospital tomorrow. You have tumours that need to be checked. You won’t like it. Neither will I. They will ask me questions son and I wish you could help me answer them. They will want to know if you are in pain with your tumours. You squeal and cry a lot but are you in pain son? Or just frustrated? They will be feeling you to see if the tumours have grown. You might not like that. Please don’t bite them. Please. They will be checking for other side effects of your condition like scoliosis, eye problems, and cancer. You will like the bit where you get stripped off. Sadly we need to dress you again. It would be good if you didn’t poo when we do it this time!

Today your nursery had a sports day and graduation. I know you hated every minute of it. You cried and fought and got very upset. I don’t know why they made you do it. All I can say is that these places like putting events like this on and it isn’t about you. It’s about them.

It never seems to be about you son. But I am trying to make it about you. I am trying to stop the system from failing you. I am desperately trying to get you the help and services you need. But right now I feel I am failing you and I am sorry it seems like that.

So I am going to let the world see you having fun at the window. You don’t know the dangers. But why would you? You are only 4 and have classic autism, severe learning difficulties, global delay and neurofibromatosis type 1. The system should be helping you but they are failing you.

And I’m sorry I am failing you too. Hopefully one day you will understand I am doing everything I can. And I love you.