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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16 thoughts on “This is home

  1. I didn`t stress and waited until my (non-verbal) autistic son was ready for toilet training – (kept giving it a short try with no pressure) Suddenly he was ready and was trained within a week – age 5 and a half and just in time for school, which was great. There are children at his special school who chat and laugh with their parents but who are still in nappies age ten. And I`m so jealous of them.

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    • I don’t feel she is ready. And with a twin brother who will be in nappies for a long time yet changing nappies will never be an issue for me. Naomi is due to start mainstream education in August and I think the professionals feel being toilet trained before then would be better. While I understand where they are coming from I will not put that sort of pressure on her to reach any milestone. We are all unique and develop at our own pace. Thanks for reading and commenting Linda.

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  2. I fully agree with you Miriam as Naomi would get stresses if the orther kids started to leave her out as she was disrupting their enjoyment. This could upset Isaac as well as he would feel his routine was being changed. There are people of high intelligence who think they know better than the people involved.

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  3. Poor Naomi! When will professionals realise that parents know best? You have every right to tell them to stop this regime as it upsets her too much! xxx

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  4. Due to sensory overload, my youngest wasn’t completely accident free until he was 8. We managed to get him to do wees in the toilet before he started school (just). But he still requires prompting. As for poos, that took quite a few more years. Toilet ing should be on her statement. If she can go to the toilet for wees but with regular prompts by school starts, that would be fabulous. If not, cest la vie.
    I find with my son, that he struggles more over the course of the term and half term. In which case toileting becomes an issue.
    As for not being invited to the meeting?! If you aren’t invited, you can’t be expected to implement things! They need to take into account the whole family’s needs and requirements, and what is feasible.

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  5. My prayer is that the professionals will quickly change their ‘tactic’ with Naomi! (NOTHING is impossible with God~~& you, Miriam, know that full well~~)

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  6. Miriam I’m going to ask a very basic question …. does Naomi recognise that the wee comes from her and doesn’t magically make her wet/make a puddle?
    The reason I ask is I was ‘advised’ to toilet train my eldest many years ago. Not long after I started – not winning in the slightest – he was wet. I asked him what had happened and he told me that there was a puddle was on the floor. (He had excellent verbal skills) . He had no idea why the puddle was there was there or where it had come from … so I firmly put him back in nappies as it was obvious that he was not developmentally ready to be independently dry.

    Just take her to the loo before meals when she washes her hands and before bed as I’m sure you are doing. It is unreasonable for any child to be toileted every 20 minutes. All they are likely to do is cause her to be scared of the toilet causing her further problems.

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    • Hi, she does understand where the wetness comes from and understands the whole routine but just struggles to understand the sensation of needing to go. She only knows after she has had an accident. With sensory needs, gross developmental delay and huge anxiety I just feel she isn’t ready yet. Hopefully nursery will see that soon before they damage her and put her right off. If I feel it is too much I will be telling them it has to stop.

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  7. If she is not getting ‘jiggly’ (as it’s known in this house) then she isn’t ready yet for self toileting. The best they can hope for is toilet training where she learns to urinate at times set by others. It can be a useful skill to learn – always being able to use the loo at set times – but it is not the same as self-toileting where she recognises what her body is saying and she reacts appropriately to the stimulus.

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  8. So you are of the opinion that the nursery is wrong in their methods? How are all other children toilet trained? By taking them every 20 minutes. The control has to be learned and that is the whole point to sticking with it. Yes the child may get upset but in the long run it is absolutely necessary to achieve the milestone of being toilet trained. It seems it is more convenient for you to keep her in nappies. You talk about wanting to move your children on but it almost seems you have embraced their differences and are content to let them stay where they are regardless of how detrimental it is to them.

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    • Thanks for reading and commenting ‘anon’. This method is not used for other children at the nursery at all. It is not more convenient to keep her in nappies for us as changing a 5 year old is very challenging especially in public facilities. Of course I want my children to ‘move on’ but when they are ready not when others decide and not to the detriment of her emotional and mental health. I do embrace my children’s differences but I strive whenever it is fitting to help them develop and grow. But it has to be what is right both for the child as an individual and for the family as a whole.
      For your information having been taken to the toilet no less than 50 times in just twi days she has yet to ‘do’ anything in the toilet and two professionals have now spoken out and asked the nursery to stop what they are doing as they are setting her up for failure and now damaging her self esteem. She will grasp toilet training, as almost all children do, when the time is right for HER not when professionals deem she has to.

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  9. anon you clearly have no idea how we have to do this different for children with special needs.

    My son is 8, autistic and not toilet trained at all. Not our choice and certainly not his. If our children don’t feel the need to go then how do they know it’s time to use a toilet????

    Also our children process information very different. Lights, smells, the big scary toilet can be overwhelming for a child with autism.

    Miriam is doing an excellent job 🙂

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    • Thank you Chickstick11. My daughter is now terrified of the toilet as a result of all this, withdrawn, feeling a failure, and less forward with toilet training than she ever was! With asd nothing is ever ‘simple’.

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    • Miriam, I rejoice with you in the update written on 20th that 2 professionals have now asked the nursery to stop this every 20 min overload!! I surely hope that they have stopped.

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