This post is part of the Kids With Special Needs Around The World series; so far, moms from Ireland, Chile, Greece, England and Sweden have all shared what it's like to raise a child with disabilities in that country. And now, Germany!
Hi there! My name is Beate, I am 38 years old and an office manager; I live in Germany with my son, who just turned five, and my husband. At the moment my son's diagnosis is “global developmental delay” or “linguistic-cognitive developmental disorder," which is very vague. The reason for his delays is unknown. Numerous genetic, chromosomal, and metabolism tests came back negative.
I had a planned c-section so there were also no incidents during birth like lack of oxygen or anything else. However, he was always too light already during my pregnancy, and was born at 2455 grams [5.4 pounds] due to a probable placenta insufficiency. One of our doctors assumes the reason for the delays to be of genetic origin, but then again it must be something that has not been discovered yet or something extremely rare.
My son is delayed in all areas, but the most significant area is his speech since he only speaks about 5 to 8 words. Apart from those he communicates with (sometimes his own) signs and sounds. At the moment we are evaluating various AAC devices in order to support him better and give him the possibility to express himself. Nevertheless, a diagnosis would not change too much for me because he is who he is. I love him to pieces and support him in the best way possible, concentrating on his specific needs.
I have been reading American blogs for a long time, and when I learn about the problems people are facing in the United States with regard to their health insurance, I start becoming very content with the situation in Germany. Our family—like 85% of the German population—is part of the compulsory health insurance (the alternative is a private medical insurance mainly only open to high-earners or self-employed persons). The compulsory health insurance covers all our costs for visits to doctors and specialists, hospital stays, rehabilitation, treatments at a health resort, therapies etc. We had numerous hospital stays already and were always given the best treatment and we would have never been sent home for insurance reasons if our son had still been ill.
The “centre of our universe” is our pediatrician. She prescribes medicine, refers us to the specialists and to the hospitals. She also decides whether or not my son's needs and will be granted therapies. Therefore, it is essential to find a good pediatrician who understands the needs of your child and works together with the parents as a team. If you are not content with your pediatrician, you can simply go and see another one since they are independent of any health insurance company. You have free choice of medical practitioner in Germany.
As soon as our son was born he was shortly after taken to his first so-called “U examination” (U is the first letter of the German word for “examination”). They are carried out in defined intervals you have to attend with your child, e.g. directly after birth, the next one between days 3 and 10, then again between weeks 4 and 6 and so on. Each examination has a specified goal, like the check of mobility and the ability of coordination as well as reflexes, muscular strength, articulation, and dental records are examined at the U8 (46th to 48th month). The reason for these examinations is to find possible defects or diseases endangering the normal physical or mental development of a child as soon as possible in order to start necessary therapies quickly. In our case it became clearly evident from U5 onwards that our son was not meeting the specified goals but that he was delayed and missing almost every milestone.
We are owners of a “severely handicapped pass” issued and granted by the state in order to serve as a proof for the claim of certain rights and disability compensations. It ranges from minimum 50% up to 100% degree of handicap. It also contains certain letters which are called “markers” and which inform about health issues of the pass holder, making him eligible for different compensations. For example, "H" means "helpless." Among other things, H enables the holder to use all public transport free of charge. Due to the pass there are a lot of places where we are granted free entrance or reduced entrance fees and free entrance for me as the accompanying person like the swimming pool, the zoo etc.
Another thing that we are granted by the health insurance company is nursing allowance. You have to apply for it and there are three stages. It is for people who care for a relative, be it a special needs child, a husband who had an accident or aged people like your mum and dad. Depending on the stage you are assigned to you are paid a certain amount each month in order to help you financially since you might not be able to work full or even part time.
My son is in a special education kindergarten. The German school system is more or less tripartite: There are regular schools, integrative schools (with a certain amount of kids with special needs per class), and special education schools. Homeschooling is not allowed in Germany. Concerning inclusion, there is still a looong way to go. As of 2013 every child has the right to attend regular schools. Right now you must be very lucky to find a school that supports inclusion to have your child attend it. But no one really knows how this will turn out in reality next year as there are still so many questions open regarding the education of teachers and all the necessary changes in the school system and challenges that come along with inclusion in regular schools, like adapted curricula, school escort and so-called “integration escorts."
Many people shy away from contact with kids or adults with special needs because they are unsure of how to react. And yes, we also get THE LOOK here in our country as well. As an example, I hate being in the waiting room of our pediatrician with lots of other moms and kids my son’s age. As it is not clearly visible why or even that my son is different, I get the “Oh, that kid is so spoiled, why does he behave like this, I bet that’s due to bad parenting” look so very often and that is something I still have to learn how to handle. So I guess this is quite similar to what you are experiencing in the United States. Since Germans, generally speaking, are not really very open towards people they do not know, hardly ever anyone comes up to me and asks me about my child.
Raising a kid with special needs is often hard. It is exhausting, often isolating, sometimes sad and frustrating. But, even more so, raising a kid with special needs is so rewarding. It has made me more tolerant, more aware of and grateful for all the accomplishments my son has achieved. Sometimes when I watch my son I am still so in awe that he can sit upright by himself or that he can walk. I take nothing for granted. I note every single new thing he can do and I make a big event out of it. I enjoy the small and good things in life much more now. I value good health much more than I did. And I love my son limitless, with every ounce of my being, with every fibre of my heart and with every bit of my soul.
I love this post just goes to show regardless of where we live we are all more alike than we are more alike than we are different.ReplyDelete
Yes! This is a good one. My graduate degree is in anthropology so I love to hear other perspectives. It's interesting that Beate said that they don't ask her about her child in Germany. I find that people are always asking me "what is wrong" with my child. wrong use of words but it is a chance to educate. He looks so happy, Beate, you are doing a wonderful job!ReplyDelete
This was really fascinating. Kids are kids anywhere and mama love is fierce everywhere. Very thought provoking about the services provided and not provided.ReplyDelete
I love the photo!! Happy kiddo and happy mom! Thanks for sharing your story.ReplyDelete
Thank you so much for sharing your experiences, Beate! "Government healthcare" gets such a bad rap here in the US, so it's always great to hear first hand experiences that show how well it can work. All the best to you and your son!ReplyDelete
Beautiful! I LOVE the last photo of the two of you together.ReplyDelete
Your services/supports there sound really good. But is there any move to use more neutral language to describe them -- as opposed to H for helpless?
Thanks so much for sharing your experiences and your son.
This is Beate, hi!ReplyDelete
Thank you for all your beautiful comments! :-) I will try to answer upcoming questions.
Louise, no, I am not aware that there are changes planned with regard to the language used in the pass. In the document there are only the markers like H or B or whatever. They stand for the specific words (like e.g. helpless or Bl for blind, Gl for deaf etc. Maybe I picked the wrong example with only stating H) in order to make clear at one glance what services your child (or the adult holding the pass, it is not exclusively for children) is granted. There are, of course, explanations that inform about what "helpless" exactly means and how it is defined with regard to the pass. The language in these explanations is quite neutral in my opinion. But to be honest, I never really thought of it to be not neutral enough. I have not even thought about it once until you mentioned it.
Regarding language: I think that is something that's different in Germany, too. I know about the "spread the word to end the word" campaign in the USA (Canada also? I do not know about that). We do not have that problem here (at least not the the extent you are dealing with it). I know that young people sometimes use the German equivalent of "retarded" in their slang. But I have never heard of any famous or prominent person using it officially in the media or on TV. I cannot imagine this to happen.
Beautiful post - thank you! KristenReplyDelete
Thankyou Ellen for sharing Beates story with us.ReplyDelete
I love learning about new families from around the world. Germany sounds brillant in regard to medical support and i hope that their 2013 plans for inclusion in the educational settings changes and educates many children and families.
I too love the last pic, just beautiful.
This is a wonderful post! Very intersting how different cultures handle special needs! I look forward to hearing from other places :-) Beate, your son is BEAUTIFUL!!!!!ReplyDelete
What a great post, it's interesting to learn what other countries offer in assistance and services for individuals with special needs. Thanks for sharing!ReplyDelete
This was beautiful! I lived in Germany during my Junior High school years. Plus I was born there. I am a US citizen though - a military brat. I have found many DME products from Germany for my son. Some of their craftsmanship is so well done. It is so nice to learn from each other. Thanks for this post.ReplyDelete