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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