Who supports the parents?

imageAnother letter. Another meeting. You know, the ones where everyone and their dog meets to discuss YOUR child? Now don’t misunderstand me here: I am so grateful for professional input, I appreciate them taking the time to come and I value there opinions (mostly).

The thing is though, they are doing what they are paid to do. They come dressed for the occasion, prepared, fresh and professional. And I just can’t compete with that.

I know I am ultimately the ‘expert’ on my child, but I don’t always feel like that.

I come to the meetings a very different person to them. I am mostly harassed, sleep-deprived, emotional and ill-prepared. I have not had the liberty of having a relaxed breakfast or had 15 minutes to apply my make-up. I have not even have a minute to use the bathroom in peace!

The times are set to meet their schedules, not mine. While I know the challenges involved in getting so many people together in the same place at the same time, I also know there will have been emails flying around, telephone conversations and tweaking of times and days among themselves to find a point of agreement. None of which I will have been involved in yet I am expected to just be there.

And I always am. Because it is what we do as parents and because I know these things are important for my children.

And so the meeting will go on. Each person will say what they are doing to help and support my child and reports will be circulated. It may well be minuted and if I am lucky I may even get a copy. Then they go their separate ways, each back to their own office, or base, or classroom and proceed with their day.

While I go home to cope with the everyday demands of two special needs children. Whilst in school my child appears to be well supported I wonder, not for the first time, about who supports the parents?

We are the ones dealing with the challenging behaviour, the meltdowns, the endless screaming, the not sleeping, the sensory difficulties and the food refusals. We are the ones who do the personal care, fight to get the uniform on and battle to get them to school. When the holidays come we are left alone and everyone at the meeting carries on with their day.

We are the ones fighting with schools, dealing with transport issues, and filling in forms. We are the bottom line and the most important people in it all. Our opinions matter hugely, our insight is important and our knowledge crucial. We should be valued, respected and acknowledged. We are the true professionals, the best experts, and have the most invested in our child. But we also deal with the reality so much more than anyone else.

I love that so many people support my children. But I do wonder sometimes when I watch other families going through the same thing as I do, when I hear so many parents of special needs children struggling with depression or crumbling with the stress of it all;

Who, in all this, is supporting the parents?

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5 thoughts on “Who supports the parents?

  1. I found your article very well written and moving. I am still new to these meetings but you’re right, I certainly haven’t been asked about my availability now that my daughter’s one year review is coming up, seven months late, after I thought up the idea of having it. I am a trained counsellor and when I am feeling a bit more robust I am thinking about an all parents support group where we meet in each other’s houses and get an opportunity to talk and offer support to each other, as we’re also the experts on what it feels like to have a child or children who come with huge challenges. Sounds like things are really tough at times. Good luck. X

    Liked by 1 person

  2. I have actually been known to turn down a time for a meeting … school have in the past firmly been told that I physically can not get to a meeting at 9am if I have to take another child to a different school for 8.50am … least not when the other school is 20+miles away from the one where the meeting is.

    The one that really winds me up is when you get given 48 hours notice, if you are lucky, of a meeting when you know everyone else must have been given a lot more notice than that.

    Having said that I did have one school that used to organise child care for my youngest when he was a babe in arms as he caused too big a ruction otherwise …. he is 16 years old now.

    Liked by 1 person

  3. I often found that people assume I’m fine with “any time” meetings because I’m a stay at home mother. In the last year I’ve now told professionals I’m employed. The difference now in making sure I’m given adequate notice of meetings is amazing. I’m definitely seen as “one of them” now that they think I’m employed!

    Liked by 1 person

  4. If the professionals followed Enquires guidelines for meetings with families things would perhaps be a bit better. It’s incredible for example how education staff assume , as Martha states, that parents can just come in anytime. There is still a huge lack of awareness about life in homes with disabled children and this all adds to the tension before “a ball is even kicked.”
    We have started our own parent support group because there was absolutely nothing here for parents. It has been difficult but worthwhile.

    Liked by 1 person

  5. It is a challenge being the parents of disabled children. You should go there and say you are the carer of the children so you should have more input to the meetings.

    Liked by 1 person

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