To add to the above:
A lot has to do with perspective.
There are those communities/organizations that try comfort you from the "nebech situation" you find yourself in by saying because you are experiencing hell/hardships down here, you are definitely getting a good Olam Haboh.
Then there are those communities/organizations that focus on the positive and show you how holy and special these children are, and what a zechus and brocho it is to have them as part of your family.
So hashkafa wise, are you looking at this child as a punishment or a gift.
The world today is well more equipped to deal with special needs children than it was 30 years ago. Not so long ago, a “retarded” child was viewed as someone with a contagious disease, and left alone in a room most of the day. With the inclusiveness and services available now days, these children are given the opportunity to thrive, each to their own capabilities.
Although the world has become way more inclusive, there are still today some frum insular communities that you are simply not allowed to have a special needs child. It’s a big mitzva to adopt someone else’s special needs child, but unacceptable to keep your own.
As mentioned above, the joy a special needs child can bring, is unparalleled to the joy of your typical children. At first, I'm sure this statement seems strange and almost like a dishonest consolation. When trying to comprehend this concept for a deeper understanding as to why this is the case, I have thought about it a little and have learnt from my daughter the following. Life is full of expectations. When our typical children don't fit into the mold or preform in the way we want them to, they are not living up to the expectations box we have predetermined for them, and we therefore feel let down or upset by them.
A child with special needs was born “out of the box” and doesn’t come with any predefined expectations that we chose for them. And as a result of this, anything and everything they do, can bring us joy.
(We can learn a lot from this approach on how to view our typical children who are letting us down!)
While they say that down syndrome is the Rolls Royce of disabilities, each diagnosis is different, there are lifelong uncertainties and each family demographic and community hashkofo is different. The spectrum ranges from very high functioning to very low functioning and often comes with other medical complications. You can never know how each parent is dealing with such a diagnosis and must respect each person for their choices.
Back to the OP. Its very normal and expected for the parents to be “distraught and lost” with an unexpected diagnosis that hit them in the face, and you need to be very respectful and sensitive. They defiantly should network with other parents of special needs children and also reach out to Hamaspic or similar to help navigate the medical side and also offer other assistance and support.
For those interested in some more details about my daughter, here is a
FB link to a post I made on her 2nd birthday, 2 years ago.
For anyone with any questions, I’m more than happy to answer to the best of my ability. No need to be shy or scared. And if you prefer, you can DM me.
