6 ms·

Out of personal experience, this is the only way to live with it. Otherwise, someone will be unhappy and most probably this one will be a child that has no way

by cgio 12y ago

Out of personal experience, this is the only way to live with it. Otherwise, someone will be unhappy and most probably this one will be a child that has no way to express the immensity of its distress. When we got the diagnosis for our son, first night, we were sitting with my wife outside, while he was sleeping. She told me "I do not want to force him to be something he is not. I do not want him to be a robot." And we decided to try to instead understand how it is to be him and find the best and most normal communication channel in his world. In the process, I think we all developed and we are extremely lucky to now read this article and know that he is very close to be one of these few cases that are "cured". I will just leave this here, in case someone is going through the same situation. You will find a million different treatments and theories. Always be present at the treatment and see how it makes you feel. If you feel alright, keep on. If something is feeling wrong leave. Do not overload the child with specialist time, especially as he/she progresses the time the child wants is with you. Work with the child like if you push one of those super market trolleys with one wheel stuck, you have to move and bend your own body. Finally, try to introduce the child to unexpectedness and randomness. Do it gently. Flip a coin (randomness), hide the coin in your palm and let him choose which palm it is in (unexpectedness of someone else's decisions), play rock-paper-scissors. Don't do it all at once. It took us one year form hidden coin to rock-paper-scissors. And finally read. You will discover more about yourself in the process. Finally, be prepared to face discrimination. It's not the worst kind, but very painful and disappointing. This world will always resist difference in some form, and given the lax network of people with this difference, discrimination against it is more efficient and frustrating. Edit: if the above sound simple, don't think I would ever imply so. When you feel too tired to do anything, have some rest (if you can) and know that probably everyone, but at least we, felt despair many times.

mcphilip 12y ago
I just wanted to say thank you for writing this up. My sister has Downs Syndrome and is very low functioning. She blossomed into a really happy and loving individual once our family stopped focusing mainly on 'normalizing' her. Thanks for sharing your experience.
huuu 12y ago
Reading this I cant understand some people remove there unborn because it is diagnosed with a disorder like down. Sure life can get difficult but reading your stories it seems that there is no difference between a 'normal' child and one a little different.
- cgio 12y ago
  Definitely, the fact that our love for our child is put to test does not in any way mean that it is greater than the love a parent of a neurotypical child has. But there are differences, like many more sleepless nights, a sweeping change in social life, an increased anxiety for the future of the child when we will not be around and of course the discrimination part I mentioned in the end. As an example, families with a child on the spectrum have limited mobility, not just because of the associated difficulties, but also because a range of countries will just not accept them (e.g. Australia and Canada), or will do so with much more difficulty. Therefore, while I understand where you are coming from, there are practical, even ratified differences which make some potential life paths even harder or impossible. Furthermore, these difficulties are often supported by the same politics/politicians that claim to care about all lives. On my part, I share with you the all encompassing respect and appreciation of life, as I live a happy life next to a different child that constantly amazes me. I would be reluctant to attribute someone else's choice to their personal disrespect for life, as long as there is a societal discrimination that might affect such decisions. Edit: I wish to be a little more explicit. The choice discussion is void in my eyes, since society has already made implicit choices around this subject which form significant input to the individual decision processes. By sending conflicting signals and putting forward choice on the one hand and respect for life on the other, we are just shaking off a collective responsibility and handing it over to an atomic existence that we already alienate in this manner. Let's fix the social norms and then we can discuss more meaningfully. If in the middle ages people with Down syndrome were properly integrated in the society, the current state of affairs is telling of the brutality and barbarism of our modern societies.

by cgio 12y ago

mcphilip 12y ago

I just wanted to say thank you for writing this up. My sister has Downs Syndrome and is very low functioning. She blossomed into a really happy and loving individual once our family stopped focusing mainly on 'normalizing' her. Thanks for sharing your experience.

huuu 12y ago

Reading this I cant understand some people remove there unborn because it is diagnosed with a disorder like down. Sure life can get difficult but reading your stories it seems that there is no difference between a 'normal' child and one a little different.

cgio 12y ago
Definitely, the fact that our love for our child is put to test does not in any way mean that it is greater than the love a parent of a neurotypical child has. But there are differences, like many more sleepless nights, a sweeping change in social life, an increased anxiety for the future of the child when we will not be around and of course the discrimination part I mentioned in the end. As an example, families with a child on the spectrum have limited mobility, not just because of the associated difficulties, but also because a range of countries will just not accept them (e.g. Australia and Canada), or will do so with much more difficulty. Therefore, while I understand where you are coming from, there are practical, even ratified differences which make some potential life paths even harder or impossible. Furthermore, these difficulties are often supported by the same politics/politicians that claim to care about all lives. On my part, I share with you the all encompassing respect and appreciation of life, as I live a happy life next to a different child that constantly amazes me. I would be reluctant to attribute someone else's choice to their personal disrespect for life, as long as there is a societal discrimination that might affect such decisions. Edit: I wish to be a little more explicit. The choice discussion is void in my eyes, since society has already made implicit choices around this subject which form significant input to the individual decision processes. By sending conflicting signals and putting forward choice on the one hand and respect for life on the other, we are just shaking off a collective responsibility and handing it over to an atomic existence that we already alienate in this manner. Let's fix the social norms and then we can discuss more meaningfully. If in the middle ages people with Down syndrome were properly integrated in the society, the current state of affairs is telling of the brutality and barbarism of our modern societies.