Posts by Monika S. Knight
The Importance of Proper Support
Published March 18, 2009 @ 03:30PM PT
When we go out (to the grocery store, to the park, into a restaurant) people stare at my son quite a bit. He makes funny and very loud noises, gets aggressive at times, behaves very differently and naturally draws a lot of attention. It is people's reaction, though, that makes the difference: whether they just turn their eyes away quickly, maybe even with a disgusted look on their face, or whether they are compassionate, giving an acknowledging smile or even offering help. I love my son and I would not want him any other way. He certainly is the joy of our life, and he helps us discover life in new and entirely unexpected ways every day. But still, life with a very severely affected autistic child is not always easy.
Having a good support system helps us very much. In school, my son has a one-on-one aide whom he has known for more than four years; also, our afternoon caretaker has worked with him for four years already. Altogether, we can provide comprehensive and consistent care. Since my son does not talk, we are working with picture and word cards, with a talker, as well as with time-related and spatial structuring methods. This has alleviated many problems.
My son loves his caretakers and they show great affection for him as well. I feel very good about the fact that he does not only focus on mom or dad, but learns to let other people into his life, and that he is a part of other people's lives as well. Hopefully, this will be quite helpful to him when he grows up. Like most parents with a severely disabled child, we think about the time when we might not be there for him anymore. I feel it is utterly important to equip him with the ability to live with others, to be part of society.
It has been proven beyond doubt that early intervention and good care can alleviate a lot of the problems that people with autism might have as children or might incur as adults. Intensive educational benefits therefore actually reduce future costs, which society might face when a person with autism has not been helped properly and is extremely difficult (and expensive) to care for as an adult. Let alone thinking of how happy or unhappy a person with autism can be, depending on how good he or she has been cared for and how much development of his or her abilities has been encouraged and appreciated.
I would like to end with a recent uplifting personal experience which might underline the importance of proper support. For a long time, we have implemented PECS as a means of communication into our every-day life, but it remained a one-way street: we were showing our son what we were doing next, and he seemed to appreciate that, but he never took up his end of the rope to use the picture cards himself. Very slowly, after years of working on it (and I have to stress again that my son is very severely affected, so our progress is probably slower than that of a lot of other children with autism), we are now seeing him discover the world of communication. He is bringing the "kitchen" card, in school he gives his aide the "more" card at lunch when he wants a second helping, and at home he frequently brings the "bathing" card, a laminated photo of him sitting in the tub with the word "bathing" written underneath. He loves to take baths, so he might bring that card three times a day.
One day, I hid the card, because John had already taken a bath. He went to the drawer that contains all of his cards, and he was searching and searching. Previously, he might have gotten frustrated and aggressive. But he kept on searching and then proudly presented the card "swimming pool." Then he walked right up to the bathroom door with a smile on his face that seemed to say: "I won this one." Consider the cognitive effort: he had a desire, he decided to try and communicate this desire, he had to know what he was looking for, he had to deal with the fact that he wasn't finding it, he had to muster the patience to look for an alternative, and then he had the abstract understanding to realize that out of all cards the pool comes closest to the tub. Moreover, his triumphant smile suggested that he understands social interaction: it really seemed like he knew I didn't want him to take another bath (which I had also told him and his verbal understanding has gotten quite good), but he found a way to trick me into it, smart little guy. Of course, John was allowed the second bath then.
I am very touched by John's progress and it makes me believe even stronger in demanding the best education for our children: a lot of frustration and aggression can be diverted this way, and be replaced by a happy boy who is very proud of his achievements.
On the Need For Advocacy in Germany
Published March 18, 2009 @ 10:31AM PT
This and another post today continue our series of writing by international guest bloggers. Monica previously wrote about educating children with autism in Germany and adulthood and more.
Having a child with autism is not and should not be about finances. Knowing that my son's special needs are fully taken care of financially by the health insurance and the government is a great relief to me. Since I don't have to spend money on any autism-related services, I feel I can concentrate on my son's development and well-being, and on the quality of our family life. We are currently doing very well, but I should mention that we only got there by strong advocacy.
Even if there are a lot of services and benefits, it does not mean that one gets them automatically. Government officials, the heads of school boards and health insurance employees naturally try to save as much as they can. As a parent, I have to investigate my rights and see to it that they get fulfilled. This is not easy for just any parent. Some people find it difficult to educate themselves, to stand up against officials with big job titles etc. This is another reason why we have founded our parent organization in Berlin: next to raising awareness, fostering advocacy, and training teachers and caretakers, we also want to help families who do not receive proper services, just because they do not know how to get them. One example: my son benefits immensely from his one-on-one aide in school, but in his class is another girl with autism who does not have a one-on-one aide. Her parents are from Africa and do not speak German.
Another example: my son is being treated by a child psychiatrist with a very good reputation. He has many patients with autism and is very experienced. When we first went to see him, my son had already been disgnosed with autism several years prior. We entered his office and twenty minutes into our visit, he turned to me and said: "Well, I don't even think I need to see your son's diagnostic paperwork anymore. This must be the most obvious, clear-cut case of autism I have seen. Right out of the book." Yet, when my son's school placement was evaluated, the school board tried to code him "cognitively challenged" rather than under the "autism" code. Autism qualifies for more benefits, and the board was trying to save. I had to fight to get the autism code – and I know a few parents who did not win that fight, even though their child has a proper diagnosis.
(Incidentally, this is one of the reasons why the question of autism prevalence is a murky and messy issue in Germany. Studies which go by school codes really aren't representative. So while everyone knows that more children are being diagnosed – mainly due to better knowledge of doctors and a broader spectrum understanding – we do not have any reliable official numbers.)
Up until my son was two years old, we lived in the U.S. and we experienced a great amount of compassion by other people. Here in Germany, people in public seem to be colder. Admittedly, this could also be due to my son's growing: he simply isn't the odd-but-cute little toddler anymore. But I feel in general that society is more tolerant and accepting in the U.S.
Is it a coincidence that the U.S. is lesser known for its social security system, but more so as a nicer society? Maybe people are more compassionate in the U.S. because they know that families with an autistic child face a lot of difficulties and have to manage these difficulties in a self-reliant way. In Germany, on the contrary, everyone knows that families with an autistic child get extensive services, receive a lot of benefits, and that their children go to schools which cost the taxpayer dearly. I think this allows people to cultivate a detached mentality, as in: "They get all they need, they are well taken care of, so why should I get involved. It's none of my business, my duty is fulfilled by the taxes I pay." The segregrating effect of children with disabilities mostly attending special schools and adults mostly living and working in special facilities might contribute to the distance, which the so-called normal people feel (and like to keep for their own comfort).
Adulthood and More for People on the Spectrum in Germany
Published March 04, 2009 @ 04:00PM PT
[Ed. This is part of the international perspectives series]
Adulthood
Since my son is only 8 years old, I am not too familiar with the situation after school yet. I hear from the parents with older children that they start to have more problems when the young adults leave school, usually at age 18. There are vocational training programs to integrate people with autism into regular jobs, there are also special workshops and day programs, but I hear that it is quite difficult to find a place that fits. Also, there seems to be a shortage in good living situations: there are some group homes that seem very good but do not have enough openings, and there are long waiting lists to get into a good group home. Some members of our parent organization are currently working on new projects for autistic adults concerning work and/or living. There is no doubt; as diagnosis numbers rise, we will have more and more adults on the spectrum. Both the German government and society will have to find new, more and better solutions for adult care and inclusion.
Disability ID & Caretaking Act
There are a number of additional services provided by the German government. Once the child is diagnosed, parents can go to a governmental office and apply for a disability ID. The office will process the application by evaluating doctors' letters. The ID will then state the degree of handicap (in case of Early Childhood Autism: 100%) and will also state other needs (H – helpless on his own, B – needs to to be accompanied at all times, etc.) These codes can be translated into certain rights. For example, if the child needs to be accompanied at all times and is helpless on his own, the accompanying person will not have to pay for public services. For example, entrance to the zoo will be free for the accompanying adult, and even traveling all throughout Germany on a high-speed train is free, as children under the age of 14 don't have to pay, and the accompanying adult doesn't have to pay, one just shows the conductor the child's disability ID. This is one of my favorite benefits: it allows us to visit my parents and grandmother, who live 400 miles away, as many times as we please without having to consider travel costs.
Once the ID has been processed, it can also be handed into the health insurance and they will send a specialist to evaluate the level of care needed at home. Any family will then receive "caretaking money" from the health insurance, regardless of the family income. There are three levels of care:
• Level I pays 215 Euros each month ($272)
• Level II pays 420 Euros/ month and ($533)
• Level III pays 675 Euros/ month ($856)
The concept of "caretaking money" was introduced in 1995 as part of the Caretaking Act. It is a means of acknowledgment of the work that a family does at home, as well as a means of encouragement to provide care at home rather than sending a family member with a disability to live in an institution. So one has to realize that this is not really an altruistic gesture from the government. The Caretaking Act actually tries to reduce costs, because providing around-the-clock professional care in an institution is much more expensive than awarding a family with "caretaking money." Since families with disabled family members supply care regardless of their income, politicians made it a point that such an acknowledgment could not be tied to or affected by income. Families can spend this money whichever way they want. The payments have just been increased as part of the reform of the Caretaking Act, effective July 1, 2008, and will gradually be increased further.
Educating Children with Autism in Germany
Published March 04, 2009 @ 10:52AM PT
[Ed. This is part of the international perspectives series]
Diagnosis
In Germany, autism awareness has increased considerably within the last two decades. Doctors know more about autism, so that a diagnosis tends to be made earlier and more frequently. Hence, much like all the Western world, we also experience an upsurge in diagnosis numbers.
Once a child is suspected to be on the spectrum, parents are referred to either a specialized center (for example a neurological pediatric clinic) or a physician in a private practice with a license for autism diagnosis (for example a child psychiatrist). Some cities also have "autism centers" which can run diagnostic tests. When a diagnosis is made, the center or doctor will discuss therapy options. In Germany, a relatively small number of children attends daycare under the age of three, therefore I do not know of any outside autism programs under that age. If the child is diagnosed earlier than three years of age, he or she will get Early Intervention at home, provided mostly by specialists coming to your house, offering traditional therapies like sensory integration, speech and occupational therapy.
Education and therapies
When children turn three years old, they usually attend nursery school, kindergarten and preschool. A child diagnosed with autism might be able to join a regular facility, if it has an integration focus. A lot of times however, regular facilities do not feel fit to accept autistic children due to a lack of experienced staff. For any such children, there are special ed facilities, which are specialized in therapeutic pedagogy and have specially educated staff. As education is run by the state and not federally administered, different states might have different policies. But generally speaking, autistic children are separated from neurotypical children very early on. This has been a matter of intensive discussion in the public for many years. These discussions have just increased after Germany signed and ratified the "UN Convention on the Rights of Persons with Disabilities." The convention states the goal of inclusion. Some feel that a separated education system violates this. However, others feel that the specialized care and protected areas provided in special schools are beneficial to certain children with autism, especially the ones severely affected. Special schools have smaller class sizes, more and specialized staff, lesser exposure to noise etc.
Entering school at six years of age, the process basically advances in the same way. There are special ed schools with different areas of expertise, like schools for children with physical disabilities, and/or learning disabilities, speech and language problems, as well as schools for the cognitively challenged. Autistic children should be distributed into the type of school that fits their needs best. A child with an Asperger's diagnosis might accordingly be mainstreamed in a regular school, getting additional care and assistance. A severely affected child might be sent to the school for cognitively challenged children. Since the spectrum is broad, one cannot generalize. However, the discussion here is the same as for preschool years: is it beneficial to have special schools or would it be better to send all children to one school? Opinions vary widely and as always, there is probably no answer that fits all.
In special ed schools, children will receive traditional therapies on-site: the buildings are usually equipped with separate therapy rooms, so that children have a class schedule on the one hand, and an individual schedule on the other hand. 2-4 times a year, all people involved (including parents) will meet in a "help conference" to work out and discuss the progress of the individual education plan.
