Feelings of Sadness for parents of disabled children

I read a blog post last night which made me feel so sad.  It wasn’t the post itself that upset me, but many of the comments left and reactions by others who seemed very quick to jump to conclusions and make judgements without knowing the facts or even, seemingly, stopping to think of some of the underlying reasons.

The post, with all its comments can be found at ‘mummy tips’ blog

In order to understand my reaction I would like you to read that post and at least some of the comments.  I could summarise it here, but, inevitably, any summary of mine would put my own bias on the post, so it would be better to read it yourself.

As a parent of two children, one of whom is on the autistic spectrum and one of whom isn’t. I bring my children up, expecting them to learn right from wrong.  I reward them for good behaviour and there are consequences for ‘bad’ behaviour.   However, I have learnt, that the ways of doing this for each child are very different.  The only consistent rule we have is that whatever reward we offer we must try to make sure that we can follow through.  It does mean that we have to think carefully when offering a reward to aim for about whether that reward will be achievable and fair to both children.  This is a hugely difficult job just with 2 children. Both in terms of the goals we set for the children and in terms of being able to provide the promised reward.  I have to admit that we are also human beings and sometimes we get it wrong.  For one reason or another we can’t follow through or not in the  detail of what we originally offered.

Inevitably if we cannot provide the reward in the way the children were expecting they are disappointed.  There may be any number of reasons why we can’t, but sometimes things don’t work out as planned, so we find some other ways of rewarding them.  At the end of the day one of the lessons children do have to learn is that sometimes, for whatever reason, plans change.

Having said that, if my children had been promised a reward at school all year which then didn’t materialise I would be upset on their behalf, particularly for my Son on the autistic spectrum who would find it hard to understand that if he had been told something would happen and then it didn’t.  He likes things to be ‘as planned’, but, again, we have to find ways of supporting him to understand that in life things don’t always work to a plan.

I can understand the anger and upset in the post from Mummy Tips about children having worked towards something that was then removed at the last minute. Of course people, parents and children, are upset.

However, what makes me sad are 3 things in particular.

1. Firstly the letter from the Headteacher in the post who openly informs all parents that the trip was cancelled because of complaints from parents and the threat of legal action.

In my view, it was probably not very sensible of a headteacher to be so totally open about the reasons with other parents.  By openly stating this in a letter the Head cannot have expected any other reaction than anger and upset and a desire to ‘blame’ the so-called ‘kill-joy’ parents for spoiling everyone’s fun.  Whatever the facts and I don’t know them! It really doesn’t seem very professional on any level for a Headteacher to be telling parents that a change is the result of the complaint of one or two others.  It stands to reason that this would be divisive.

Sadly, it is probably the way the letter was written and the way the news was shared that has partly led to the sense of anger and bad feeling that exists now.  This, surely, cannot be good for anyone, including the children involved, many of whom will pick up the anger and frustration from their parents.

2.  Having written the letter in this way, the inevitable result has been for parents and children to be upset and angry.  It isn’t the blog post itself that has upset me and many other parents of children with a variety of special needs, but the sheer volume of comments from people who are reacting to the expression of disappointment by blaming a parent and referring to it as sour grapes.

I would argue that very few of the people who commented on that post had children who attended the school.  None of us know the full story behind why the trip had to be cancelled.

However it seemed all to easy for many people just to assume it was ‘sour grapes’ on the part of a parent who was disgruntled because their child had been excluded from the trip because the child hadn’t been good enough.  Its true, this might have been the case, but I’m guessing that most of the pepole putting in their 2 cents worth in the comment thread knew that for certain.  The kind of rhetoric in the comments about parents of ‘little shits’ and complaints about how some children get ‘stars’ for sitting still for five minutes whilst those who sit still all the time are never rewarded.

When my 9yo comes home and talks about children who get house points for sitting still etc. we talk about why their needs are different and why some people are rewarded for different things.  She is now beginning to understand that some children struggle to sit still as much as she might struggle with a science problem.

There are very often complicated reasons such as special needs or emotional trauma that might cause a child difficulties with behaviour.  It is very rarely because the child is inherantly naughty or the parents are unaware and burying their heads in the sand.  OK, this might be the case some of the time, but how do we know? -and if we don’t know is it fair to judge?

There are many other explanations that may have been the reason for a parent being upset.  I have read too many blogs and re-counts written by parents of children with learning difficulties, autistic spectrum disorders and other special needs to know that very often they are fighting so hard to get diagnoses for their children and to get appropriate support in schools.  Many of these parents are all to aware that their child is unable to sit still, unable to share, might melt-down because they can’t stand the smell of the teacher’s perfume, but don’t know how to explain that the smell hurts. etc.

Before anyone points it out, I don’t know if any of this was the case in this situation, but equally I don’t know that it wasn’t.  It therefore seems to me that it is unfair for all those comments to jump on to the bandwagon of decrying the parents and assuming it was because somebody’s ‘little precious’ couldn’t go.

3.  Some of the comments that I found particularly distressing were written by teachers.  All I can say Is that I hope my beautiful boy will never be taught by a teacher who feels they need to judge his behaviour and label him as ‘bad’ without first taking the trouble to find out the reasons and to work with us as his parents and other relevant professionals to help find solutions.  Sadly, I know for a lot of people this is all too much of a reality.

As a parent of a child with asperger’s and as a disability rights campaigner it just makes me realise how far we need to go to try and get people to stop and think before they jump to conclusions.

For me this type of reaction, when it is seen in the bigger picture, is a reflection of a large part of the media and current Government rhetoric which is leading people to believe that disabled people are all fakes and benefit scroungers.  This, in fact, is a long way from the truth and this type of attitude is harmful. As a disabled person and parent of disabled children I find it upsetting and frightening.

I know this post won’t be popular with some people and I know I could loose some followers, but I had to write it.  If I kept quiet I wouldn’t be be being true to myself or my desire to raise awareness and tackle some of the really engrained attitudes that exist within society to make life for disabled people and families of disabled children so hard.

If you have a mind to find out about some of the difficulties that parents have dealing with the judgements of others please go and read one or more of the following blogs:

A Boy With Asperger’s – ‘Please Let Me Come’
Many of the posts at Aspie In The Family which relate to schools, attitudes and neighbours
Many of the posts at ‘Choosing My Battles’

If you would like to leave a comment please do, however I would ask that you think about the purpose of this post, which is to question whether we should make judgements without knowing the facts.  and about the assumptions made about disabled people and their parents and families.  If you have views about the particular case discussed at Mummy-tips perhaps you could leave your views on her site.

Thank you for reading and into the fiery furnace I jump…

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About Violets Diary

Visually impaired Mum, with VI hubby, 2 disabled children. Disability campaigner, novice blogger and tweeter. Trying to put the world to rights and share our journey and positive stories. https://violetsdiary.wordpress.com
This entry was posted in Aspergers, campaigning, disability, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

18 Responses to Feelings of Sadness for parents of disabled children

  1. Scottish Mum says:

    I’ll be first to reply since I’ve been so vocal over there. I just spent a morning with a school who had images of a wheelchair bound girl with little use or arms and badly curved spine climb a wall. Part of an outdoor scheme, she was saddled up and her classmates used a rope to pull her up to the top of the wall so she could have the same exhileration as her more able bodies classmates.

    I look from that to the comments on Mummy Tips blog pitting parent against parent and will eventually lead to child against child. The assumptions that are made and a reward scheme based on individual performance to that level are abhorrent to my mind. With that pink slip scheme, wheelchair bound girl would never have got to the top of the wall as she wouldn’t have been allowed to go for making noises in class.

    A house system would have been much more appropriate and build teams rather than individuals going solo.

    I am disgusted by some of the comments on Mummy Tips post, especially the little shits ones and things like throwing veg at the parent who was responsible, when none of those people actually knew what happened or why it was stopped.

    I am not going to take note of who said what or I might not be able to participate in social media properly, and in any case, I guess I am more forgiving than they. I will continue to talk to other mums and keep trying to raise the awareness of people who are different, no matter what the reasons.

    We live in a society which now mimics the US, so rightly or wrongly, if the system can’t be justified, it shouldn’t be happening in the first place. The staff are the cause of this problem, not the parents or the kids. They put a weak programme in place and set the parent who complained up for a fall.

    • I don’t like individual reward schemes either, but as i don’t know the full facts about that i’d rather not comment. the issues that upset me were the management decision that allowed this to happen and the keeness of others to judge something they really didn’t know the facts about. Thanks for your support xx

  2. crystaljigsaw says:

    I think I read somewhere, maybe in the comments I can’t remember, that the child/children who couldn’t go weren’t children with special needs. However, I did comment on that post with my first reaction of disgust towards the parents who had stopped it going ahead. It’s so easy for any of us to judge others, it’s human nature and no matter where we are, who we’re with, there will always be people ready to judge others without knowing the full and true facts.

    I want to also point out that I woke up in the night thinking about that incident and I wouldn’t be surprised if it goes on in many mainstream schools. Encouragement is what children need most to achieve and that comes at different levels, depending on their ability.

    I’m not going to get involved with spats and confrontation on social media because I am an active member of the parent blogging community, and I really want to keep it that way. Therefore, I will also continue to raise much needed awareness for special needs families, hoping the families who are feel they have no need to learn about special needs will at least try to understand what it’s like.

    I hope we can all move on from this now and support each other.
    CJ x

    • Thanks CJ, My reading of the comments was different, in that I wasn’t clear that anyone knew the identity of the person / people who had complained which is why I was upset about the number of people who were so quick to judge something they did not know the full facts about. I agree re. rewards being about encouragement, although, as I’ve said my real concern is about judgements and assumptions.
      I understand your long-standing involvement in the blogging community and the huge following you have. I think we all have a role to play in trying to challenge people’s assumptions and everyone does it in a different way, which is fine. For me difference is good, but judging people for their difference isn’t.
      By writing this I don’t wish to stir up resentment, I merely wish to ask people to think. I enjoy reading many other much more light hearted blogs than my own and intend to carry on doing so.
      Thanks for commenting. xx

  3. Deb says:

    I think the head has got it wrong. Firstly I think connecting the reward system to a trip was bound to fail in my opinion. Rewards systems are not always successful; it is easy to be subjective and to overlook children particularly the quieter ones in a class of 30 or so kids. Some children also don’t respond well to reward systems like this but need another approach. This isn’t to say we shouldn’t have a reward system; I think there should be a reward system but one that is flexible to the particular needs and goals of ALL children in the school.

    As for the comments, I am saddened with the quick judgements being made about the parent or parents involved. None of us know the facts of this case so it is inappropriate and unfair to assume that this parent is being so selfish and cruel. I think people need to pause for a moment and ask why a parent has complained about this system; it might not be ‘sour grapes’ as some commenters suggest but a real concern about the fairness of the scheme.

    Its a shame that the trip was cancelled and its sad that those children who thought they had earned a trip are now not going on it. I think the school are wrong to cancel the trip but it is also wrong to assume that the parent who complained was the one who stopped the trip. Without the facts, we cannot know the reasons why the trip was stopped.

    I agree that the letter by the head was irresponsible and was bound to stir up emotions between parents but I have to wonder what the motive was in this. Was it a way to deflect attention from the head and if so why? It seems to me that the school community should be asking questions of the head and the board of governors rather than targeting the parent. They are the ones that are responsible for running the school and ensuring that the school meet their obligations under the equality act.

    • Thanks Deb. I have my opinions about reward systems and I guess they all work differently for different children. And as I don’t know the full facts involved with the system I’m not so keen to comment on that, but it seems a bizarre decision on the part of the Head to write the letter in the way he did. To have done it differently would have, I’m sure, had a totally different outcome. I also understand how disappointed the children and parents must have been about the cancellation, but by writing to them like this has stirred up all the bad feeling and allowed people to make judgements about things they don’t know about.

  4. Sian says:

    Firstly, I would like to thank you for writing this post.
    Secondly, I would like to comment on the HT’s letter which is what kicked this all off for me.
    The head is very experienced, he came out of retirement to take the temporary position at our school and whilst I have great respect for him and the things he has made happen during his time with us, I totally think he knew what he was doing sending out the letter that he did. He wanted a reaction.
    The letter is the ONLY information we have on why the trip was cancelled. Parents are angry and want answers because at the moment the only thing we know is that a parent complained.
    I wholly agree that there could be a huge background story to this and that the cancellation of the trip could easily have been the culmination but with the limited information given who knows?
    The head could have avoided this whole situation with a differently worded letter.
    Yesterday afternoon an email from school landed in my inbox asking me to remove the post. The reaction is perhaps a little greater than originally expected…

    • Thanks very much for your comment Sian, as I said I can totally understand the reason for you writing your post and the upset of the other children who had been looking forward to something, but it was the nature of the comments that shocked me. With limited knowledge of the facts it seemed to me that the real question is why did the Head choose to publish that letter? As you say he must have known, and wanted a reaction. I spend a lot of my life trying to challenge assumptions people make and it just seemed that lots of people jumped in and were keen to throw the blame at one person without knowing the facts.
      Thanks again for commenting.

      • P.S. also meant to say re. the email from school. Gosh – if they don’t like the reaction perhaps they shouldn’t send out letters like that! Whatever the Head may have achieved in school it is sad that he did something like this. – although I guess you, and they, were probably a bit surprised by the reaction. – I guess the next school governors meeting could be an interesting one!
        Thanks again.

  5. 1funmum says:

    Greetings from across the pond! Well written blog post violet. Don’t jump! I don’t think anyone would dare write or enter an argument with you. Fighting a losing battle or face looking like an idiot any way. My two cent may not hold weight but I have to agree the head teacher as you guys call them wasn’t thinking straight when he wrote that unprofessional letter. Not to mention it sounds like a dated way to do things. Why he had to know that there would be disputes all around from the start. Do you need a masters to see this coming lol. He could have also made individual reward programs for students with a more smaller prize like a certificate of excellence and a board where your picture goes up. I think they call it students of the month. Why doesn’t parents give suggestions to teachers to be more constructive. Teachers work so hard all year long. They put out a lot of effort. But when I read some of those comments I see some stars missing. Two cent done

    • I don’t know all the details of the reward system and the policies in that school. I think different systems will work for different children. Sian, (see above comment) was the author of that post and, as she says the Head must have known and wanted a reaction by sending out the letter. Thanks for commenting. xx

  6. Well done and I agree with much of what you had to say. I thought the whole thing very odd, as some of the commenters were clearly associated with the school, while others did not know the name of the school, and no-one knew the exact nature of the situation 😦

  7. Montymum says:

    I think your points are really vaild. One of the reasons I’ve been attepmting to pull the stops out for a diagnosis for my daughter is that I don’t want her to go go to her Senior school and be judged again as a child who is “from a single parent family” and that is why she struggles with her behaviour, rather than she suffers from Aspergers and actually been brought up in a very stable home.

    It’s just an unfortunate and dissapointing situiation, the letter was possibly written in a hurry. One thing , I don’t believe it breaks the conditions of the Equality Act, but I am no solicitor. Additionally as a Christian parent I teach my daughter that there are consequences to actions, although it is Christian to forgive, there are consequence to actions.The terms seem fair, therefore this is why I agreee it’s best not to judge without having all the facts. Good post! 🙂

    • I have a friend, who I think is in a very similar situation to you re. her child and being a single parent. I can’t comment on the issues re. the equality act as I don’t know the facts, either about the law or the details of the situation, but if the letter was written in a hurry it seems to me as though a lot more thought should go into this kind of correspondence.
      Thank you for your comment, and I hope you get some answers for your daughter.
      My Son has aspergers and is about to start High School, so I understand your worries.

      • Montymum says:

        Thankfully we met with the AEN Co ordinator last week from her new school and due to recent events and one of the NHS Departments stating they felt that while undergoing diagnosis she should be treated as if she has ASD/Aspergers, they stated they would do this and took everything very much in their stride, which was a huge relief! As previously stated understanding instead of judgement is key! 🙂

  8. For a Head to allow the children to work towards a reward that is vulnerable to a potential lae suit is irresponsible and short-sighted. And then to blame it on the parents is just wrong.

    • I think that was the general feeling. As I don’t know the details of the original situation I can’t comment, but it was upsetting to see all the bandwagon comments which blamed parents when it seemed that those people probably didn’t know the facts either. It did seem to many that if the head had handled it differently this whole situation wouldn’t have arisen. Thank you for reading and commenting.

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