How did we get here?

As I sat holding my frightened 5 year old daughter in the back of an ambulance at 2:30 in the morning, for a split second, in the midst of fear and exhaustion, I wondered how exactly did we get here?

Here I was giving details of my daughter calmly to a stranger in a green uniform when all my body craved was sleep. I would say adrenalin was taking over, but medically this is impossible as I live with a potentially life threatening condition which means my body does not produce stress hormones. Moments earlier I had been lying in my bed praying silent prayers. It seemed at that moment they were not to be answered.
Naomi had been struggling for the last 24 hours with nose bleeds. At the tender age of 5 she had experienced them before. But nothing on this scale. I had already been in to her 4 times since she had been put to bed. But they just kept restarting. It was getting scary, for her and for me, and for my husband. Dad was becoming frustrated that his baby girl was not able to let him help. So he let me deal with this one. But this one was never ending. And then she started vomiting up blood. Again and again. I have never been so terrified. So I called for an ambulance.

So that was how we ended up at accident and emergency in the middle of the night with one of my babies.

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As I look in the mirror at the scratches and bruises on my neck caused by my five year old non verbal son I once again wonder, how did we get here?

How did we get to the place where he punches us, kicks us, bites us, scratches us and throws things at us? When did it all start? When did I start dreading reading his home/school diary because his behaviour has become so challenging? Sometimes things just gradually creep up over time until you realise it has become overwhelming. One unpaid bill soon leads to another, one moment of shouting at your children soon becomes the norm, one day giving in to their food fads leads to constant demands for chocolate for breakfast. One day Isaac having one tantrum and finding it funny to kick something has lead to him repeating this behaviour often. One reaction from someone, negative or positive, has lead to challenging behaviours becoming a daily occurrence. One day having mashed potato for dinner leads to constant demands for the same food to be repeated. Then one day we had no mashed potato left.

So that was how I ended up with bruises and scratches on my neck from my five year old autistic son.

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As I find myself in yet another meeting with professionals discussing my daughters personal needs regarding going to the toilet I once again wonder to myself, how exactly did we get here?

With only 7 weeks left until she finishes nursery and only 4 months until she starts school, yet here we are talking with a group of professionals about strategies that might help her come out of nappies. Did I ever think I would have 5 year old children still wearing nappies day and night? No. Did I ever think I would need professional help to potty train a child? No. Did I expect both my children to have additional needs? Not at all. She seemed so perfect at birth. And later on I just thought she was slow to walk. In fact, I had very few concerns about my little princess until she started nursery school at 2 and a half. It was quite a shock to realise that my beautiful blue eyed girl had autism, and with it bowel and bladder issues, high anxiety and gross movement difficulties. It is funny how you soon adjust to talking about your child to professionals like it is a daily occurrence. In fact, for me, it pretty much is a daily occurrence now. You get used to the paperwork, and the forms and constant phone calls. You even refer to some people on first name terms like you have known them since school. You learn to ignore some of their ideas, you learn to adapt other suggestions and you know who to chase up for the missing paperwork. You learn the talk and the lingo and the laws you need to quote. And even though it breaks your heart, you learn to call and order nappies for your school aged child because you know you are still going to need them. You’re on to the fourth attempt at potty training now and you know it is going to be, like everything else, a long journey ahead.

So that is how I am still discussing pants and toilet cards and reward charts for potty training my 5 year old.

How did we get here? I still ask that every time we visit yet another hospital, or visit the dentist or eye clinic as we do every six weeks, or when we now add in the ENT referral for Naomi. If the NHS did reward cards like MacDonalds do for their hot drinks I would be high on caffeine by now. It feels like we have our own parking space at the clinics these days.

Life happens. Sometimes it can feel overwhelming. Sometimes it is relentless. Sometimes you just find yourself in a place you never dreamt you would be. But it is ok. If someone had told me I would have been in any of these places this week when I first gave birth to my beautiful twins in 2008 I would have struggled to believe you. It is a journey. We cope with today, look to the future, pray, hope and keep on going. One day soon I will be back on the mountaintop celebrating with my children in some new amazing thing they have achieved. And I will enjoy it all the more for having been through these valleys.

And you know what, even in the great times I will still wonder, how did we get here?

How? Because through it ALL God is there. That is how I got here and that is how I will get out of here too.

(Naomi lost a lot of blood but was released from hospital that night and is now recovering. We have strategies in place at home and school to deal with Isaac’s behaviour and there is some minor progress towards toilet training one of the twins)

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This is home

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They say home is where the heart is. Home is the one place you should be relaxed, loved, accepted and free to be yourself.
It is where children should be free to play, relax, unwind, receive physical and emotional nourishment, be safe and be able to have fun. Where goofing around, laughing, tickling, cuddles, love and forgiveness should flow freely. A place where growing up and making mistakes is accepted both for children and adults. The one place where you can truly be yourself without judgement.
Yet so often my home is filled with screaming, tantrums, shouting, stress and tension. And sometimes the reason for this disharmony is because home is no longer becoming the place it should be, for my children or for me. The one place that should be free of judgement and pressure is becoming encroached upon by outside influences. In our case well meaning professionals.
Now before I go any further, please give me a minute to explain. I am the mum who writes daily in my children’s home/school diaries, I am on school committees, I attend every meeting about my children, I am continually fighting to get their needs met, and I spend many hours working with them both to help them achieve all they can be. I am a huge believer in working with the professionals and continuing where possible the work they are doing at home. My son has laminated photos all over the kitchen cupboards to help him communicate, my daughter has social stories read to her daily, I read books to them, sing to them and play with them both all the time. But there comes a time when I have to say that ‘this is home’ and we just chill watching a dvd or play tickle monster or just watch my son as he looks out the window watching the rain. Because as much as my children need therapy, and support and training, they also need to be able to be themselves and relax and be allowed to just be children. And home is the one place they should be allowed to do that more than anywhere.
So right now I am clashing with the professionals dealing with my daughter. Because for the first time I am not implementing the same strategies as her team of professionals are. This happens to also have been the first time her ‘team’ have discussed such strategies without us, as parents, having been invited. That could be another blog all to itself! But that outrage aside, the sheer intensity and stress of the current programme for Naomi is such that I have had to say ‘enough is enough’ and just let the nursery carry out the plan there alone. I know this will affect her development, her confidence and the whole continuity of the aims of the plan but I can not, and will not, allow anything that happens to one of my family affect the entire family in such a way as to cause my home to no longer feel like home for everyone.
You see, while I want to move my children on and support them all I can, I must balance the needs of one child with the needs of the entire family. And I need to remember that this is home, not school, or nursery, or a treatment centre or a training course.
Home should not be about constantly meeting targets, or analysing everything that is said and done, or recording every sound, or completing educational objectives. Home is fun, relaxing, and being yourself. My children should not be so stressed at home that they cry every time you look at them.
When I had a bad fall down stairs four months ago and required weekly physiotherapy I scheduled every appointment around my children’s school and nursery times. And I did the exercises as and when I could. Life did not stop at 4pm daily while mum does her 30 minutes of ham string exercises. Because the reality of home life is not like that. You don’t get a ticket at home, wait until your name is called and then have your half hour of therapy 1-1. It has to be worked around household chores, caring for children, hospital appointments, paying bills and phone calls. This is home.
So what is this intense strategy we are not doing? Well the professionals involved in my daughters care have decided to start an intense toilet training regime with her. She will no longer be wearing nappies at nursery and will be taken to the toilet every twenty minutes regardless what she is doing. Today that meant she was taken from a game she was playing with other children after much encouragement to join in, only to come back from the toilet trip to find the game had finished and she had lost. She was then taken during snack and therefore missed out on a drink (how ironic when this could have aided their toiletting plan!), and many other times that she can’t remember as her stress levels had escalated so much. In fact her stress became so high she had a fall in nursery and banged her cheek on the corner of a table. And you know what, never once did she manage anything in the toilet but she still had an accident. And she came home from nursery distraught.

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I am supposed to be taking her every 20 minutes at home too. And nappies are only supposed to be for bedtime. And on top of this we are supposed to record on a daily chart when she is wet, or has a bowel movement, or if anything happens on the toilet. Every twenty minutes from waking to sleep. But I just can’t do it.
Naomi’s twin brother has severe and complex needs. He has seizures, is non verbal, requires support at all times and is also in nappies. I need to cook, clean, eat, attend appointments with my children, leave the house, and play with my children. And I need to keep my marriage going in all this too.
My daughter isn’t coping with the intensity. My son is not understanding mum always seeing to his sister every twenty minutes and not being there when he needs me, my husband is stressed trying to cook, clean and continue life around 20 minute clock alarms and none of us are happy. Home is no longer a place of safety, or fun, or laughter. And going out is a nightmare.
So to everyone’s relief the pull ups are back on. Toilet trips are worked around everyday life and if she isn’t ready, then so what.
This week it was toiletting, a few months ago it was my physio, the year before that we had to record every morsel my daughter ate for the dietician, and next year it could be homework from school shifting the balance.
Whatever it is, the value of home life will always stay strong with me. Home is where we should all be able to be ourselves, be loved and learn through play. Without stress, pressure or targets to meet. Without alarms ringing to call us to the next thing, or without filling in forms every 20 minutes or having to record everything your child eats or says.
It’s getting the balance really. School is school. Hospital is hospital. But here…well here is where you kick off your shoes, wear your pyjamas when you want, cover the living room in train sets, watch dvd’s of lift doors opening and closing as much as you want, make mistakes, be forgiven and be loved whatever.
This is home.

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