Many I suspect ALL parents of children with special needs could tell you about thier battles.
Battles with thier conscience , battles with thier guilt , battles with thier love , anger , fear and joy. The many internal battles that we face with all children I suppose but I think a little more so when your child has a disability. This is not a WHY ME ? Post I can promise you . I dont believe karma , I dont believe I am a *
special mother* caring for
Heavens special child* Ive never been to
Holland .. or Italy for that matter and I have no desire to visit either. I believe in the random universe. Good and bad things happen to good and bad people . The real mark of a person is how they choose to deal with thier random circumstances.
Ive done the battles in my head , was it something I did while I was pregnant ? Are the current / future / past behavioural problems because of our parenting skills ? . Are we giving the right support to a child who needs it ? are we educating her well ? Are her learning difficulties made worse / better by our influences ? Ive done them and slowly but surely ive got better at dealing with those thoughts. I dont think there is a good parent in this world who doesnt question whether the things they do and the choices they make are the "right" ones for thier children.
Bad parents ..
really bad parents don't question themselves at all . Of course in some situations
other people SHOULD question those parents actions. I understand this .
We struggle to keep our daughter safe. She has no danger awareness at all . This has resulted in some very close shaves ... near accidents that could have caused her severe injury. Imagine an 18 month old toddler and the safety precautions that many parents put in place to keep those children safe. A stairgate , a playpen , safety straps on a high chair .. cupboard locks and door locks , fridge locks , toilet lid locks .. there are many products on the market to
keep your children safe . To NOT keep your child safe is a crime . Rightly so. Having read of the failings of the many people involved in the case of " baby P " none have struck me as horrific as those failings of the childs MOTHER . Social workers , doctors and healthcare staff have been named,shamed and sacked. His mother remains unamed and will face the same punishment as many other people who *I* believe have committed lesser crimes. Perhaps our system makes examples of the wrong people in these cases.
My child is seven years old. She has the danger awareness of an 18month old toddler. She is the size of a seven year old. The dangers to her in a regular family home are far greater than to a toddler. Learning difficulties are very complex and hard to explain to anyone who has not had very close experience of them . I cannot explain for instance how this child that cannot count to 5 , that cannot say her own name and does not know that pulling a boiling kettle upon yourself might hurt, CAN use her hairclip to open a window lock on the first floor. Or CAN find a full set of keys and know which key opens the front door. Most 18 month olds struggle to reach the handle. or the back of a work top . Few toddlers can climb very high. A seven yr old can reach with one leg onto a worksurface in a kitchen to climb onto them , reach with one arm to the back of the worktop. Its scary when you know just how high she can climb.
Ataxia .. meaning "lack of order" is a neurological sign and symptom consisting of gross lack of coordination of muscle movements. Ataxia is a non-specific clinical manifestation implying dysfunction of parts of the nervous system that coordinate movement, such as the cerebellum.
My seven year old has
cerebellar ataxia. Ataxic , adverturous, wobbly, lively , visually impaired ,inquisitive, epileptic , strong and complex learning difficulties. Its a potentially lethal combination. Leaving me with some dilemmas. Just one of the many dilemmas has been the focus of the day
At night more often than not she will creep into our bed, I say creep .. its more like Herman Munster thudding down the hall staggering and banging into things falling through the door , kneeling on me and hauling herself into my bed using my flesh for leverage. During the night she is often more *wobbly * than during the day.
We have stair gates. Great for stopping a wobbly child from falling unecessarily down the stairs in a sleepy stupor.
She also sometimes wakes in the night and is very awake. We use melatonin to aid with her sleep difficulties. It is not uncommon for children with neurological dysfunction not to sleep well , or to have periods of waking through the night. The danger arises when parents are still asleep. When the usual THUDS turn out to be the *wobbly child* tumbling down the stairs because they are now seven years old and the stair gate isnt designed for anyone much taller than a toddler. The stair gate itself becomes an added danger . Adding height to the fall as the child climbs over the top. Worst case scenario ? a broken neck.
SO what is the safest option ? Of course having 1 to 1 attention at all times would be the obvious solution. But in real life and real families this is rarely possible. A higher gate would be good. There are other rooms in the house where this would be really useful . The Kitchen for one. But like most families in britain we have been credit crunched .. money doesnt grow on trees around here and bespoke gates cost money. SO back to those emotional battles . Where do we turn for help. Asking for help from ANYONE is one of the hardest emotional battles. I have been there , I tried to survive without asking for help and I believe had I not ever accepted that I can't do everything alone then it would certainly have been my downfall.
And so we approached social services occupational therapy department to ask for help , adapting and making safe our home for our disabled daughter. There is a misconception among many that people who have a disabled child *get lots of money for them* . I have personally heard negative comments about the use of tax payers money in disabled facilities grants. Do people believe we choose to have a disabled child ? that we choose to have these problems and the financial implications that come with them. The loss of earnings when I had to give up work to care for my disabled child. With three children , a large mortgage and rising costs of everything including the 40% tax on the one and only wage coming into this house we perhaps arent as well off as some people .. including us ! ..would like to believe .
An occupational therapist came to our house. She decides what adaptions are necessary and whether they can be funded by social services. If we had the money we would not need to ask permission to make adaptions to our home. No one would be any the wiser to what measures we took to keep our children safe . Simply closing and locking the bedroom door is not a solution as it poses further dangers to my child. It occurred to me that a stable door where I could leave the top half open so I could HEAR my child but prevent her from the dangers of wandering in the night might be a solution. So this was what we enquired about.
I was accused of wishing to *restrain my child* I was told that these adaptions could not be carried out as it was an illegal physical restraint . SO here I am trying to find a solution to a very serious problem only to be accused of a form of abuse. I was shocked at the language used to describe what we wanted .
We CAN HAVE .. an expensive alarm that alerts us to her leaving her bed .. an expensive alarm that alerts us to her leaving her room .. and an expensive alarm on each door that alerts us to her entering any other room in the house .. we can have extortionately expensive cctv put into every room in our house so that we can monitor and watch her via a remote control screen .. we can have vibrating buzzers which we strap to ourselves to replace the sound alarms on each of those devices so that we are woken by a vibrating pad to get out of bed and go to her without waking our other children with noisy alarms... at which point we would of course have to use some kind of physical restraint to stop her from harming herself by falling down the stairs and then find a way of keeping her in her own room..Im not sure at what age it becomes totally inappropriate to have your child thud into your bed each night. We will not ever be allowed by the ss ot's to have a stable door on a bedroom. Allegedly.
They did however agree to put a stable door on our kitchen. The dangers of the kitchen during the day when the family are awake and around the home were deemed to be greater than the dangers of our first floor during the night while the rest of the family sleeps. Despite past history of her managing to plug in hair straighteners that heat to 230 dgrees .Opening the bathroom window and turning on hot taps running baths that she could potentially drown in while we sleep exhausted from a day of chasing a hyperactive ataxic wobbly child. DO You know how much we cherish the thought of alarms ringing through the night ?.You should.
Today the social services builder came and cut our kitchen door in half making it into a stable door. So I can now lock the lower half of the door whilst I cook keeping her out of the kitchen and away from the danger of the cooker kettle etc . In theory anyway. It turns out the lock on the other side of the door is at a height she can reach and she took a whole 2 minutes to discover how to unlock the door.
I explained our dilemma of the bedroom door. He asked why I dont just close the bedroom door so she has to knock to come out .. there are no laws against us doing this.Except trying to ensure my childs safety I thought it better to close only half a door .So I could hear her waking and thudding out of bed. So I could check on her during the night and hopefully reassure her from a distance where she could also hear us. TRYING so hard to find the right solution I am accused of mistreating my beautiful girl.
Are we all to be judged by the standards of the bad parents ?
