What are you fighting for? For what parents of the disabled child are engaged in its development.

Alice draws

In one of the comments, I was asked what I’m going to fight for, if the child has one future-boarding school. My daughter has several diagnoses (autism, SMA, mild mental retardation and ADHD, I wrote about this in detail here and here).
In fact, events can develop in different ways.
Ideal option.
Since she is now making progress in speech, the prognosis is quite favorable. Alice can speak, Yes, perhaps her speech will not be so complete and diverse, but the development of speech is always the development of thinking. According to the works of the founder of the cultural and historical concept, the great Russian psychologist Lev Vygotsky, first the child’s thinking pulls speech, and then speech promotes the development of thinking. Therefore, if it goes, the leap in development will also be very good. In this situation, she will be able to get an education, learn a profession (even if it is gardening) and live quite independently. Most likely supervision, though it will be needed, but rather as a guiding control. And under this option, all we are doing is just fighting for such a development. It is known that the earlier you start working with a child, the greater success you can achieve.
Second option.
It won’t do. It’s possible. In this case, we remain on alternative communication and the goal remains the same – to achieve maximum independence. Even in the absence of speech and under condition slow development thinking she well can to end school (I now not about comprehensive) and obtain profession. In this scenario, she will need more adult supervision, but if I teach her to take care of herself, then both she and the person who will take care of her (and it will be either me or then our eldest son) will be much easier to do it.
Third option.
In the worst case scenario, if Alice herself will not be able to take care of herself, if she is in adulthood will live in a boarding school, she still needs to learn independence. She must be able to serve herself, go to the toilet, eat, dress, she must have Hobbies, some duties. Without this, it will regress and eventually may lose all available skills. And then you can say that it does not live, but exists. In her case, constant work on yourself-is a guarantee not only the preservation of what has already been achieved, but also the development, development of the new.
Now it 7 years and if I now will stop “fight”, then us awaits only the third option. Even realizing that such an ideal as the norm for us may be unattainable it does not negate the fact that development in any case will be. She grows, she learns new skills, becomes more curious, independent, more sociable. She has Hobbies, she learns to explain what she wants and what she doesn’t and it’s all very important and it’s all part of our great work.
Movement is life, if we stop going forward, we will immediately be sucked into the swamp. Therefore, we take ourselves in hand, learn to set adequate goals, continue to dream and fight for its future, for independence, for it to live and not exist.