The UN Convention on the Rights of Persons with Disabilities, Article 23 says: To provide appropriate assistance to persons with disabilities in the performance of their duties as educators of children. Provide early and comprehensive information, services and support to children with disabilities and their families. A child must under no circumstances be separated from parents on the basis of either the child or one or both parents have disabilities. Object of the Convention should have a positive impact on my life and ensure my legal rights, but for my case I experienced it, just like paper rights outside the practice. This I will here try to explain. Ethical considerations All people can unfortunately, suffer undeserved disability. Be it;
- A neurological disability due to an acquired brain injury after a car accident.
- A physical disability for work or leisure accident.
- Parents who at birth are told that they have had a visible disabled child.
- Parents are their child’s early years are told their child has a neurological profound disabilities.
- Parents are their child’s teenage age, are told that the cause of their child’s severe illness / condition is a neurological brain damage or pervasive neurodevelopmental disorder
- Adults who after a very hard life, with severe defeat. are told that all their problems are due to a congenital brain damage, one pervasive developmental disorder. Eg. autism.
Some choose life for their unborn child, knowing that it is born with a disability, others choose an abortion if they know the child will be born with disabilities and disabled children are also born with disabilities.
Who has the right to sit as a judge of other people’s lives, and what is ethical or most correct in such a debate? Who has the right to define the right in such an emotional decision? UN Human Rights states that everyone has the right to have children with disabilities and we can not deny that there is scientific evidence that the fetus is a living organism, already at conception and is already in a fetal age of 8 weeks, the heartbeat and reaction patterns . I have met many people with various neurological and physical disabilities and often it has been a shocking announcement at birth or later in the child’s development, the child is born with a disability or severe suffering. Regardless of background, disability through no fault and no one chooses voluntarily disabilities.
Could you investigate a fertilized egg to any undesirable genes or chromosomal abnormalities, it would then be ethical, to sort unwanted eggs and embryos from?  I will not withdraw my own ethics when my opinions are subjective and irrelevant. I relate not to other disabled groups, but define my perspective, to autism. Some researchers believe that one should have a touch of autism genes to be a genius, where speculation that several significant historical geniuses have had autism or simply a touch of autism. In that case it would not be very intellectually, to weed out these embryos, as this unique group of people and have had great importance for humanity and society . Genetic guilt Autism is a congenital defect that occurs due to genetic heredity, pregnancy, injury or birth defect. In my case, autism genetic why we are one adult and three children with autism disabilities.
In 2007, brain researchers, autism is 70 – 100% genetically inherited and we had 3 children, where two were diagnosed, the youngest was under investigation and I had just got my diagnosis. I feel greatly, standing involuntarily in the public spotlight as guilty of being society to load – an expense and hassle. I love my children as they are, but is aware that I am responsible for a public financial burden. Before 2001, I was a good taxpayer. I grumbled to myself for that our tax dollars, should also be used to take care of “the weak in our society”; the disabled, children, young people and older or treat diseases, sports injuries and so on. I thought; “Imagine if one day it hit me, then I would be happy for the welfare we have built and paid for”. I saw it as a security where “one hand washes the other,” we take care of each other and no one can say “it never happens to me.” But “what if”, was far from my mind, my own life, but I did not dare say “it never happens to me.” “What if” has become my reality where my functional level has been drastically downward, due to excessive demands, lack of support, stress, overload and lack of insight and commitment from public organizations. Mentally it has been very destructive to reflect me in guilt over that I have “allowed” me to load system and my surroundings.
The significance of the lack of knowledge about autism and the complexity of, to be more disabled in one family research shows that autism rarely stands alone, the complex comorbidity in our family also confirms. The summary of the parent in need of support, children in need of support, age, disability, Appendix disorders etc. means that our support needs are spread out in several of the municipal administrations (municipal family management grow disabilities, assistive dept.), where we find that the municipality does not have the experience or the basis to manage such a complex task. The communal administrations handling or lack thereof, has a massive impact on a family like ours, where the more or less determines the quality of my life. Municipal administrations decisions are left to the individual caseworker’s discretion, where we experience the lack of linkage between case management, support, understanding and human ethics. It is a process that is often combined with prejudices and preconceptions that has branched into several administrations over many years. It causes us great difficulty in getting the proper relevant and vital support. The complex details of our situation overlooked assessed or not taken into account the whole family.
The individual administrations, social workers and managers will only take care of it that belong to their dept. And responsibility. Ex .: · My cases are dealt with in adult disability that will not decide that I am also a parent. · In my case management, takes no account of the fact that I have three children with special difficulties and what it means for me and my function. · My children’s cases are heard in family management handicap unit where they do not take a position on that one parent has disabilities and non-disabled parent, therefore carries many additional disability-related tasks. · Resources for my children treated at a particular caseworker who will only deal with one person at a time, so need not be seen as a whole. · Resources for myself, treated with a particular caseworker who is not considering that I have three children with the same need for aids or means therefore must be able to withstand a greater or more onerous task. · Contract. This kind of processing causes a lot of damage acting pitfalls, there are several ways cripple us in even greater degree and makes cooperation with the local governments and public organizations, very complicated and sometimes impossible. We experience being held hostage in an economic tearing feast of family management, tool management, grow disabilities and others
The municipality forget that by supporting parents with disabilities also supports the child or children and vice versa. By our disability action plans by the municipality, are all evaluated isolated, with isolated needs as a person and my parenting or family wholeness situation is not assessed together. We have seen how the respect for our family, completely disappeared. The focus shifted from what was essential, namely that I struggled for survival and opinion-forming conditions for my children. We are left in a huge emotional minefield, with many dangers, about a disability as autism, is too complex and individual condition that it be left to each municipal employees’ decisions and attitudes. Parents with disabilities is also a very diverse group, easily and should therefore also be assessed individually. The municipality “losing” track of what help is needed, for which provisions they could provide support and works exclusively to look for all possible ways to deny the necessary support.
For example, for our necessary aids to make everyday life and to work on as independent a level as possible, is not obvious aids for case workers and occupational therapists in the municipal administrations. For a family like ours, where there are 4 people with autism and additional ailments, the lack of aids stress massively. I find that by browsing aids in municipal mobility centers, produce a loud discrimination for handicap, between physical disability and neurological handicap. The devices are offered are intended for physically disabled people and not people with neurological disabilities. Devices for neurological disabilities are either very minimal or absent.
The lack of understanding of our disability and regulatory, legal options, causes great difficulty in obtaining the necessary and appropriate support to be a parent with disabilities, children with disabilities, as difficult as autism is. Some decisions of refusal to support, can in isolation and blurry vision beskueres deemed justified. But in general and coordination skills are refusals by no means justified. Appeal bodies as state administration, Complaints and Appeals Board takes no account of coordination and all the details, such as whether there are more disabled people in the same family. They treat the matter isolated and enshrine mostly municipal decisions on narrow errors foundations. I experience mismanagement and decision failure where they are not attentive or alert to the need of cooperation and coordination across administrations and other organizations. Only the responsible leaders who may require priority and demand that this coordination happens in practice and it seems they often do not have an interest. The non-disabled parent In families where one parent has a disability, and the other is quite “normal”, the parent without disabilities compensate.
In our family, this, my husband. On top of the “normal” caring tasks a parent spouse usually has is there for my husband added many disability-related care tasks, some of which also concerns me. My husband pulls on that basis, excessive, burdensome and time consuming tasks in some areas where he often pushed beyond capacity, between family and work. The family is his main priority, but the work is necessary for our survival and also his sanctuary, which he enjoys. It is very difficult for me to maintain equality in my marriage when my disabling caller makes that I have the feeling, that, too, I must draw on my husband, and be dependent on him.
That’s my man;
• manage medication
• provide prescription renewal
• Telephone agreements and other calls
• making agreements
• do economy
I struggle to free myself dependency on my husband. I often feel like a burden and I reflect me often that other people exhibit or says, compassion, my husband has a disabled wife and three disabled children. Adult with Autism Man does not grow from autism, just as it grows, lack of physical body and summary, one can say that there is very little knowledge about the actual development process for people with autism when they reach adulthood. Professor Rita Jordan, Birmingham University, says that it appears that people with autism first develop an inner identity, the earliest around the 25 – 30 years. This means that you begin to understand themselves, thoughts, reactions, connections, etc.. around this age. It gives me a lot of sense and outside their own experience, others with autism and literature, it seems extremely likely. Philosophize I pass on this and it summarizes the theories, is my hypothesis that we probably have discovered something very significant.
Namely, that the misconceptions entry errors and injuries that are formed in childhood and adolescence, only felt around 25-30 years of age. This will among others. could explain part of the many supplements disorders and psychological conditions that characterize adult autistic people’s life and makes life so difficult. Studies that assessed autistic individuals overall functioning in adulthood, has spoken of a very poor prognosis, with only about 10% of the surveyed people did well, while the whole 50% did poorly. We are many who learn to compensate for our disabled calling intellectually, which I personally also feel that reinforce my social disability, in what I perceive more visions “normal” and I on my special interest is exceptionally intelligent, but the other is immense unintelligent . It gives a very skewed cognitive brain function, which in turn provides a more offbeat personality profile and mindset that makes social interaction difficult. It makes me more dependent on the counterparty empathy, understanding and willingness to meet me. On the whole, it seems social interaction and life in general, often difficult the more high-functioning autistic one is. I find it hard to master the skills that underlie to initiate and maintain social interaction and communication, because skills are outside an entirely different brain thinking and functioning. It’s almost like two different human species and it offers very opposite communication and samspils issues. Additional Handicap, epilepsy and other biologically based regression and side effects of prolonged treatment with psychotropic drugs may also, have a very serious and irreversible adverse effect on the adult person’s overall condition, which can lead to a serious deterioration in the autistic person’s condition. Side effects of extensive and prolonged use of psychotropic drugs is well known in other populations, but the extent, nature and the implications for people with autism are not specifically illustrated.
Stress Under “normal” family conditions, where there is no disability, family members spend a great deal of time outside the “four walls”. Most go for sports, evening courses, working arrangements and other leisure activities. They visit friends and relatives on a regular basis and in general “freedom” to make choices. We are often unable to participate in the events feel guilty about having to say no to friends invitations because we lack support for common things to make profit other than duties. From early morning – to late evening, we are both “on” 100% and even a cup of coffee on the sofa, is often impossible. The large extent of disability-related care tasks occupy all our time, the days are simply too short and we must therefore often organize practical tasks like laundry, packed lunches, cleaning etc. When the kids are asleep and therefore we often walk to after midnight. Some of the suffering caused to the children’s autism, often makes the children in need of care at night and all in all it leaves often very little sleep. My children have their helhedsskole m. Care facility, my husband has his work and work-related courses while I need support to get out and because the aid and offers mangles, I spend the whole week behind “four walls”. When it is holiday for us, it is usually behind the “four walls” because support and offer shortcomings, and the holidays are industry marked and there are very many people in the deals offered, which is not compatible with autism disabling caller.
The cost of aids and specific measures have exhausted all financial opportunities, where every penny must be reversed and the number to more than possible. We can not finance the cost of the children or my need for the necessary visual systems such as images, photos, computer, printer cartridges, boards, magnets, laminating pouches, glue guns, glue sticks and so on. This means that we must limit, we can not individualize need as requires and for the most part, we must do without our aid. It will be similar to, if we were physically disabled and could only borrow a wheelchair or similar. 6 days per month. The shortage has limited our possibilities to the extreme. My husband and I are both in our own ways very congested in everyday life where our bodily physical condition slowly and increasingly fail us.
Very clearly, it appeared to me in 2009 when I was rushed hospitalized, was dying and was put on a ventilator because my organs were congested and inflamed. It was very thoughtful as stress research shows that mental stress causes the body to release chemicals – neurotransmitters that affect different organs. A small excerpt of stressors for a family with autism in the life: Research shows that mothers of adolescents and adults with autism experience chronic stress comparable to soldiers in war and battle, and these mothers spend significantly more time on caregiving than parents without disabilities. Children with autism are hovedstressoren in the family. Stress levels measured to be highest among families with children with high-functioning autism, because high-functioning autism, is not distinct disabilities, but often act immediately “normal”. Hidden disabilities gives greater uncertainty. There is no immediate acceptance of special interest, because; “They see the not seem to fail more than good parenting, attention and love can remedy.” Autism hinder maneuverability – it is a “loss of freedom”.
Damage Effects lack of space, the lack of acceptance of “community”, lack of knowledge held by governments, lack of support, our individual disability ringing, the summed family disability and stress has taken its toll, in my inner soul and my self-functioning. In a very lengthy period of years, I medicated with a large amount of psychotropic drugs, a part of my own childhood and youth defeats, inconvenience and hardship, relives again I, through my children. My late single identity, developed in many ways at the same time with the children, which has been an advantage for them to be understood and recognized, but a very large expense full drawback for my personal home. This means that I have been overloaded, far beyond their means and human that it can surprise me, I am still alive. In my childhood and teenage years, I served for some as a more social individual. Over the years I became more strained by the lack of support and lack of spare needs, which I began to perceive around 30 years.
As a 30 year old, I had had my 3 wish children who appeared to be born with high-functioning autism. I was made aware of a reason why I had always felt so different, disability genes they had inherited from me. Loading rate soared, as the children’s age and number of defeats and fight alone with the community adversity, without any kind of support. “Ready yourself” attitude from the municipality, raised serious traces and imprints of my inner life. My level of functioning and even stubbornness degree with regard to everyday skills are significantly impaired, which I embarrassment of trying to cover up and I can not grasp that the fight for the necessary help to myself. I am over the past been isolated. I get no better of it, but I can not get out of the need for isolation because there is nothing that makes sense or motivate me. My self-image and sense of identity is poor and self-effacing. I suffer from social phobia, which I choose and do everything to avoid socializing and reduce communication with anyone other than my few support people who are around me, with the exception of my children, I can cope with less body contact and hugs, handshakes and the touch is significantly reduced. Human contact has been very demanding and difficult for me and for socializing, it takes me several days subsequent to rediscover an inner peace.