Thursday also marked the start of another autism group workshop with a bunch of great people: therapists, adults and their teenage children. I'm not allowed to tell you what happened, but I can tell you that it used up the entire morning, and was a replacement for the one-hour appointment that I and my son had been expecting. That used to take place in our home. This new arrangement may be efficient for the cash-strapped autism service providers, and I know that I should be grateful that my son is getting some kind of a service, but I just felt ground down by yet another drain on my time.
So I was feeling extra sensitive and that probably affected my reaction to this post by a very lovely blogger, who shared her relief that the devastation of hearing that her child could have down syndrome was over, and that her baby seemed to be developing normally. I am delighted for her, and I would have said exactly the same when I was young. But now I have a different perspective. Looking outwards from my special needs bubble it is uncomfortable to think that others perhaps view my life and my children as a nightmare. It is true that no-one would wish special needs on a baby, but it need not be a nightmare when it happens.
On the other hand, I don't want anyone to feel that they have to censor what they write just to pacify me. I'm not always a fan of political correctness, and other people's feelings are just as valid as mine. Especially when mine are perhaps a tad over sensitive.
But I do want to tell that young mum that having a child with down syndrome or any other special need should not be a nightmare. Sometimes it feels that way alright. But it's not their fault.
Special needs children have the same basic needs for love and attention as every other child. Some are easy to parent and delightful and rewarding, and some are more difficult, just like other children. It's their additional needs that can be hard to meet. Their needs for therapy, equipment, medication, and everything else that helps them to fulfil their potential. That's where parents need help. That's where the nightmares lurk. In the piles of paperwork, the uncaring bureaucracy, the endless battles to get help, support and respite.
It's not special needs that pregnant mums should fear, it's the pitiless world order that really doesn't care.
NOTE: I was in touch with the author of the post that inspired this one and she told me that she has two cousins with health issues and intellectual disabilities, and has watched their families struggle financially, emotionally, physically and mentally. She says that the nightmare was in the not knowing, the waiting around and what risks might be involved as she details here in this emotional post:
We both agreed that there is a need to change the conversation around special needs so that people fight for better services rather than fear having a child who is different.