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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It doesn’t take much

Life, for me, is a very delicate balance.

The balance between meeting the needs of my very different 5 year old twins. The balance between being a good mum and also being a good wife. The balance between keeping my house clean and tidy for the many and varied professionals who visit but also allowing my children to be free to play and be at home. The balance between trying to move my children’s development onwards but also being very aware of thier need for sameness and the huge anxiety that change brings. The balance between encouraging my son to speak when he has no language but also facilitating him by providing a means to communicate that does not involve speech. The balance between wanting to teach my children social rules and conforming to social norms but also allowing them to be the unique autistic individuals God made them to be.

My selfish desires for quality photos of my children on the wall, to celebrate Christmas as much as possible, to see them in nativity plays and shows and to take them to interesting and educational places like museums and castles, to go out for family meals sometimes and visit family. But balancing that with the fact neither of them do social activities, they have serious sensory issues that make going out a challenge,what is interesting to me is maybe of no relevance to a 5 year old who is really just a 1 year old developmentally, accessing places with a disability buggy is a major challenge, and sometimes the best thing for everyone is just the safe haven of home.

It’s a fine balance.

And it doesn’t take much…to upset that balance.

Somedays we get it right. And others we don’t. For example:

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Since he started school in August and started wearing a red jumper as part of his uniform Isaac has insisted he wears red jumpers every day. And every weekend I try and break some of this rigidity by once again attempting to put on other clothes. He screams, bites, cries and becomes very distraught until the battle becomes more than it needs to be. Sometimes as a parent you need to be willing to lose the battle in order to win the war. So the red jumper goes back on.

It doesn’t take much …for calm to be restored.

But some days you really would prefer he wore something else. Like the day I decided to try and take the children and my mum to a photo shoot. A huge risk but something that was a dream for me for years. But also a major hurdle for the children. That delicate balance between my desires as a mum and thier needs as special children. Compromise..we will book a photographer used to dealing with autistic children and take items with us the children really love. So Elmo DVD and DVD player, wooden farm set and Naomi’s favourite cuddle toy of the day, and biscuits! We only lasted 30 minutes in the studio but I got my hearts desire:

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It doesn’t take much…to make my dream come true.

The balance between both dad and myself longing to attend Isaac’s first ever school parents night with the fact that both children would be upset at the change of routine. It would take a military operation to prepare them for the fact gran would be here at dinner time and the need to have a dinner both children and gran would eat, prepared and ready to serve, prior to Isaac having a meltdown because he sees someone cooking and Naomi screaming ‘I don’t like that!’ Oh and not fogetting a 26 mile round journey just for a 20 minute meeting with his class teacher. But the report and pictures and video clips we saw were worth all the effort it took.

It doesn’t take much…to make me a very proud mum.

When we were out at a local shopping centre and for the first time Naomi asked to see Santa. To see her overcome her anxiety and sensory issues to walk into a dark grotto and talk to a stranger. And to hear her being asked a question I knew she may not feel confortable answering. ‘What would you like me to bring you for Christmas Naomi?’ I gulped, held my breath and waited to see how she would respond. “A toothbrush please!”

It doesn’t take much…to please a child.

When we finally got a letter in the post with details of a proposed respite plan to start in the new year. Once again we had to break the children’s routine of going to church every Sunday to take them to a new centre to meet new people who hopefully will look after them both for a few hours once a fortnight starting next month. I could have found myself dealing with two anxious, upset and screaming children. Instead Isaac took great delight in exploring the windows of the room and examining close up a mural on the wall. And Naomi sat and drew a picture with beautifully lined up ordered pencils. While I filled in forms in duplicate giving every little detail about my children and life imaginable. It isn’t easy admitting you need a break. It isn’t easy dealing with disability times 2, 24 hours a day, whilst trying to keep your marriage strong and your bank balance healthy. Knowing there is a chance of a little break next year spurs me on though.

It doesn’t take much…to give me hope.

Naomi being given the nursery teddy bear to bring home and look after for a day. A box full of cuddly toys already but there is something wonderful and special about this nursery bear and all that they sent home with it. So ‘Sarah’ came out for lunch with us because her brother was having a school trip today.

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It doesn’t take much…to make a child feel special.

Recieving an e-mail from Romania from someone who reads my blog. Knowing someone has been encouraged. Knowing you might have got the balance of humour, reality and the sheer joy of raising two wonderful children with special needs. Just knowing that someone cares. Realising that there are other families facing the same delicate balance of raising special children in a society that does not always celebrate them. Knowing you are not alone. Appreciating the time and effort it took someone else to contact you.

It doesn’t take much…to touch another life.

Life is a very delicate balance for us all. Raising special needs children just makes that balance a little harder to achieve some days.