It's not special needs that pregnant mums should fear

Perhaps it was the come down after Smiley's wonderful graduation ceremony on Wednesday, but Thursday felt like the pits. My daughter finishes school next week and her graduation should have been a celebration of her school years and excitement about the next stage in her life. Instead she has nowhere to go and faces an unknown and uncertain future, like many other young adults with special needs.

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:

http://mylittlebabog.com/2015/02/11/a-baby-is-a-blessing-a-gift-from-god-above-a-precious-little-angel-to-cherish-and-to-love/

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.


14 comments:

  1. Great post.Couldnt have put it better myself.It's not having a child with special needs that's necessarily hard but the constant struggle for services and the battle for society's acceptance that is so hard to get a lot of the time.

    ReplyDelete
    Replies
    1. It's mad and such a waste of time and energy x

      Delete
  2. I couldn't have said it better, than you, (and Aedin, above) have already said.. but I can add a *knowing nod*, and empathy.

    I'm so pleased for Smiley, Graduation... what an achievement. My congratulations to her (and to you)...

    as for *another drain on your time*, relate, relate, relate! ... as if we don't have enough on our plate, just getting ourselves, and our specials through the day!

    I hope you are able to find a solution for Smiley's future, one that you (and She) are both comfortable with. Sending hugs, Kimmie x

    ReplyDelete
    Replies
    1. Thank you Kimmie, I am working really hard to try and find somewhere that she will like x

      Delete
  3. Oh totally get your feelings here. Especially after a night where my girl has said she doesn't want to go to school any more - she's serious, and yes it's the first time she's said it, but she means it. It may not be easy, but 'it is what it is' as my wise Mum said to me. I also felt a bit sick at all the joyful comments of relief that there is nothing 'wrong' with this baby - but know full well that's exactly how I would have felt and what I would have said in the years before I had my second girl. You're so totally right, it's the conversation and priorities which need changing. xx

    ReplyDelete
  4. It's such an emotive subject, and should cause debate. You're right, more should be done to support families, so the fear is not so great x

    ReplyDelete
    Replies
    1. No family should have to be afraid of having a special needs child, it's so sad that society has made it this way x

      Delete
  5. Yesterday I shared an adoption video made by friends of mine, showing them bringing their baby home from Africa and indroducing him to the rest of the family. Most of the comments were of the nature - I loved this, so beautiful, etc... One friend, a mother of three, wrote: "I am so in awe of people who adopt, I couldn't do it." This comment felt offensive to my friends who have adopted, and to all adoptive parents. Like it's in some way less than having a real child of your own. So I know what you meant about your thoughts on reading the other post. (I still don't know how to respond to my friend so I'm just ignoring her comment atm).

    Another friend who was warned that her foetus could have Downs and in fact she did, told me - whichever way it goes it's ok. You love them just as much and they bring you just as much joy (as well as all the worry - but as you say, the worry is because of the system and society, not because of your lovely child).

    ReplyDelete
    Replies
    1. I suspect that your friend was being honest about adoption, and just didn't think about how others might take the comment, something I suspect that most people do at times - I know I do!

      But that doesn't mean that we shouldn't be told how our comments have affected others - it all depends on how that is done, I think.

      Delete
  6. This one tugged at my heartstrings big time. xx

    ReplyDelete