I have to say that reading some of this thread has made me feel profoundly sad. DH just asked me what the matter was.
I wonder whether 'some' contributors think that having a disabled child happens to other people. Most of us are delighted when our little bump turns into a healthy typically developing child. But sometimes something happens, and life takes a different path. It is often completely unexpected, and sometimes (god forbid) our perfect little darling suffers a catastrophic incident and is never the same.
It is very difficult to imagine what it is like if your child turns out to have a disability, I don't know what its like, but I spend my life working with families with disabled children. I know that emotionally it is very hard, and all families cope with it very differently, but in the end it is a profound shock and it takes time to come to terms with it. Even then, there will be times, such as transition points (going up to the juniors, starting secondary, leaving education) when you have to come to terms with it all over again.
SO there is a background of stress which is different to a typical family, add to it numerous appointments;
appointments arent hard are they??
Wait unit your child has to goto the orthodontist (if you go nhs you won't get appointments out of school time), its tough but this goes on for 18+ years. Families often have to visit specialists out of area, so a 50 mile journey into the centre of London to be told that your child needs surgery to prevent pain and poor quality of life in their future. Wait until your child needs to have their tonsils out, feel the stress and anxiety and imagine what it feels like for your child to go through a number of serious operations, perhaps 5 hours long more than once.
Add to that sleep deprivation. Did your baby sleep through at birth?Probably not, its tough, but imagine what its like to be woken through the night for over 18 years, what does that do to you? Can you cope with working?
Add to that medicine, has your child ever had to have antibiotics, did you remember to give each dose on time? You have to use up emotional energy remembering, imagine what thats like every day for over 18 years. Imagine what its like knowing that if you don't give the medication or notice that your child has put on weight (because they won't be getting the right dose)that they will have a huge seizure which will end up in another hospital admission.
You want your child to goto an after school ballet class? Imagine what its like to have to fight everybody to get her into that class, Oh the waiting list if 18 months long and I'm not sure she'll ever get to the top. She doesn't fit the criteria, youre expecting too much, the ballet classes are a luxury ... oh the ballet teachers off sick and no ones going to replace her - never mind, maybe in a few months a newly qualified ballet teacher will start, she's never worked with children - she's really very good. Oh she needs ballet shoes - you can have these cheap shitty ones that keep breaking ... sorry you can't have a different pair, if you buy those yourself, then you will have to import special fabric and sew them yourself. Sorry but you need to come to this appointment anyway and I will tell you all this again...
Not the best metaphor but before you judge, inform yourself