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.

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17 thoughts on “I just need some breathing space

  1. Really sorry your having a hard time , glad you’ve managed to get a little respite hope this helps and would be nice if perhaps a friend could have your daughter for just a couple of hours so you could have a nap . Surely someone from church could help . Take care , will pray for you 🙂

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  2. I feel for you – I’m dreading the school holidays (due to start here in England in a week or so) as I always do. Your son sounds a lot like mine was at that age, He’s easier now he’s older (10) in many ways – he’s able to entertain himself for longer, but he still gets up to a lot of the stuff that yours does, plus a few extras (like climbing out of the windows and going in the neighbours houses to rifle through their DVD collections – we spent the weekend putting locks on all the windows) so I can really empathise, especially as you have two children. These long school holidays are exactly what autistic children don’t need. I’ll be marking the days off on my calender until September – and feeling guilty about it.

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  3. (((HUGS))) Miriam . Please don’t feel guilty. The ‘professionals’ wouldn’t be able to do any better and they get short hours and sleep in between shifts. He will be enjoying himself while he is there.

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  4. thanks Linda. The 7 weeks summer holiday can feel like the longest 7 weeks ever! I love having my children at home but they both struggle with the lack of routine and structure. Hope your holidays go better than you expect.

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  5. I’ve decided being a good mum means getting help. You are human and only stretch so far. I completely understand the guilt of not doing it all. As much as my head knows I’m doing the right thing my heart still complains. Really praying for Angels to rise up in your church community and the courage for you to take help when offered (any help – meals, laundry, cleaning whatever). God never asked us to be independent. Jesus calls us into a community of interdependence. When we all start realising success isn’t measured in doing it alone the better. praying x

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  6. Dear Miriam,

    Reading this brought tears to my eyes as any of your blogs do. I know we have never met but I want you to know that I am proud of you and I love you and your family. I think of you often and am so glad I can have a peak into your world and your thoughts – so that I may come to know you a little, even from afar. I am sure that any mom, any parent, would assure you that you are doing the right thing for your whole family. Everyone needs a break sometimes. Maybe Isaac needs a break too. The respite care could offer him that change of scenery / change or people that we all need sometimes. I know these are small words and that your inner struggle will go on regardless but please know that we see your love for your children and your family and we know – as they do – that you will always be there for them. With these small breaks you will only be a better mum to him. Love and prayers and always support – your cousin, Sara

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  7. By asking for help, you’re providing him with the structure, support and routine that he needs. That makes you a fabulous mum, as you’ve put his requirements first.
    Take care of yourself as well.

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  8. My son is now 17, I remember well when we were in exactly the same position you are. We rang SS constantly, we begged and begged for help, finally someone listened and we know get 70 nights a year of overnight respite and 6 sessions over a fortnight of school holiday club during the summer, both saved my sanity.
    C is much much better now, partly because of his age and partly because the respite we get gives everyone else time to recharge to do things they can’t when C is at home.
    I hope and pray that you continue to get respite and that maybe someone will listen and give you overnight breaks too so you can sleep

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  9. I fully endorse all you have written Miriam. Isaac can’t be left even for a couple of minutes because of his severe needs. Naomi too needs the break. She has her own difficulties and mum and dad time on her own for a few hours for two days a week will be good for her. To be able to take her to places that are off limit when Isaac is around. Admitting you need help is not a failure on your part. You are all needing support. Isaac has great difficulty when his structured routine is interupted, Naomi has difficulties too and struggles along, and you and Nigel also need time to chill, go for a meal, time for yourselves so asking for help and receiving some becomes a necessity for you all. In no way are you a failure. I too am praying that others will come around you all and support you as they are able. I love you all loads and would help you more if I were able to do so.
    My love and prayers are always with you.
    Mum

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  10. Failure? Definitely NOT… Just the opposite is true!!! All of the above comments are words for you to take to heart & read again & again, if those thoughts return!! DO NOT feel guilty, but thankful that the Lord has provided this repite for all of you… (It is Good for Isaac, too!)

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  11. Oh……. I read this as I come off the third phone call to the third organisation in the last hour. I’m crying. I feel your pain. I have my grandson, he’s almost four and came to us from care having had his ribs broken at five weeks old. He’s got a diagnosis of attachment disorder and I’m in the place you are. The guilt is unbearable, I feel such a failure for not being able to cope. You are doing an incredible job! I don’t know how you cope with two children! I just wanted to say thank you for writing what must have been a very hard blog, it’s made me feel less alone x sending hugs xxxx

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  12. I feel your pain my lovely, you just put into words how my life is exactly and how I feel emotionally. I hope you no you are not alone all my kind wishes x

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