The Insignificant Mother

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It started before the meeting even began. Emails, phone calls and discussions between you all to synchronise diaries and finalise a time and location that suited everyone. Everyone, of course, except the insignificant mother. My diary was never checked. No-one asked if the time suited me or if the location was convenient. As long as the ‘professionals’ are fine with it that is what matters apparently.

You all had weeks of notice. I received the letter in the post just days before. You all knew the agenda, I didn’t.

So here we are all sat around the table. I notice you all smartly dressed, folders and pens at the ready and reports all prepared, while I sit there in yesterday’s clothes trying to remember if I got around to brushing my teeth this morning or not.

Introduction are done and apologies made, yet a few chairs still lie empty. It seems some of you have not turned up, again. I realise that every person in the room is paid to be there, except me. This is everyday stuff to you all. Meeting are your norm. Not for me. I am not sure what you all think I do all day or even what you all think of me at all. What I do know is that none of you feel I am important enough to be given a title. The sign in sheet asked me to list my profession and just as I went to write ‘parent’ one of you says ‘you can just leave that bit blank’.

You all get your turn at discussing my child like you know them so well. I want to scream at you when you don’t even say his name right or know his age. I am told to wait my turn. Each person talks about my child like he is a number. He is just one of your case load, a child you will soon move on from, either by discharging or he moves on to another class. I guess I am at least thankful you made the effort to come. Sadly some of your fellow professionals never even gave my son that honour.

I wonder if I will ever get to speak. I have no prepared report to give you all or targets I have achieved. He made it to school today, does that count? He even had breakfast..that surely gives me bonus points?

“Mum, do you have anything to add”, so you actually noticed I was there after all! I have lots I could say but does it really matter? If I disagree with anything said it gets recorded as ‘not engaging with professionals’, if I talk about home life I am reminded ‘we must stick to the points in question’, if I ask to be reminded of something that was discussed ‘we have covered that point and you will be able to read it in the minutes’. What do you actually want me to say? What you really want is me to tell you all how wonderful you are and how grateful I am for your input. You want me to pat you on the back and boost your ego and bow down to your authority. You all hold the power in these things and I am just the insignificant mum.

The meeting closes. You all return to your cosy offices, your clinic appointments and your computers.

I return home to the non verbal screaming child. I return home to the little girl refusing to eat. You can tick you box to say you had your meeting, you can record who attended and who didn’t. Please do send me the minutes to file away with the large pile of reports and factsheets I have already.

One day I may get around to reading them. Right now I have a diary full of hospital appointments and two children who need a huge amount of support. You may like to record at your next meeting that the person providing all this support day and night, unpaid, and out of love, is the insignificant mother.

Insignificant to professionals maybe, but hugely significant and loved by the two people who count the most.

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53 thoughts on “The Insignificant Mother

  1. Like you I hate being the last person to be consulted.
    These days I’m more bolshy than ever.
    At the end of a meeting I get my Diary out and ask when ‘We’ are scheduling the next meeting.
    I always ask to see the agenda before the meeting, and ask who’s been invited, and will be attending or submitting reports.
    If there’s something I wish to raise I always ask for it to be added to the agenda.
    I work on the basis that I am equally but differently skilled to the professionals …. I know my boy more than they do.
    Oh, and if it’s going to be a challenging meeting, I always make notes (or take someone with me to do so) and then email them to say I believe that in the meeting we all agreed to ‘X,y and z’.
    Hugs.
    Remember you are vital to your children.
    J xx

    Liked by 1 person

  2. I often find these meetings really sad…you are starkly reminded of your child’s failure to meet expected targets and her peers’ amazing abilities to learn and develop seemingly by osmosis. Have one coming up with school soon and we’re going to chat about her staying in mainstream or going to special school. We think she is SO amazing and has come on so well but these meetings always bring us back to earth with a bump. Hang on in there! xx

    Liked by 1 person

    • You know your child best. Agree to send your child to a special school if you think it is in her future interest. A lot of kids are sent for the comfort of he system, not the good of the kids. Carry on the good fight! All the best xx

      Liked by 2 people

  3. If more than one of them says that date is not convenient they will consider reschedule the meeting but you always feel that if you did the same there is a risk they’ll just say it’s ok we’ll manage without your input.

    Yet in reality YOU are the only one there who really knows your child(ren). xxx

    Liked by 1 person

  4. It’s not just about knowing your child, we tend to be expert in many other areas as well, we have to be, and this is never acknowledged. I guarantee that I have read more, discussed more, attended more seminars and courses about my child’s disability than any teacher who has ever taught my child. Probably more than all of them put together…

    Liked by 2 people

  5. “Not engaging with professionals” is Social-Worker-speak for “refusing to be browbeaten”. Next time, sign the sheet and list yourself as “parent – the most important person present” and underline it! Once my daughter became an adult I was not allowed any input into her health meetings on the grounds that “we can’t have just anyone coming in here and saying anything they like”!!! So I went to the Court of Protection and got appointed as her deputy, and now no one can take any decisions about her without my agreement. I also noticed after my husband’s death that I get far less respect in meetings as a single mum than we got as a couple, or he got on his own. It’s wrong but it still happens.

    Liked by 2 people

  6. I am so sorry to hear you have had these experiences. As the parent you are the person who knows your child the most, and we as professionals are there to support you and your family working towards achieving the life you aspire to have together. Sadly limited resources can mean we do not always give enough time and consideration to ensure parents feel central to all the meetings, assessments and interventions that happen. I will remember your post, and work hard to not cause the same frustrations to the parents I meet.

    Liked by 1 person

  7. Can so relate to this. Although have heard the term ‘professional parent’ being used by a consultant, who hated it when parents thought they knew more than she did! But what they forget is that we live and care for our children 24/7 & should never be made to feel insignificant in our children’s lives.
    I like many of you will always advocate for my children to get their voices heard and needs met.

    Liked by 1 person

  8. This is such a heartbreaking perspective, which unfortunately as pointed out by other parents does happen way too often.
    Sitting on the other side of the table, I always try to ensure the parents views are considered as after all, we as professionals should be there to guide parents not make decisions for them and we should see parents as the experts of their own child. We know all children are so individual and that they cannot be boxed into one category, so why do other professions still continue to behave utilising this old medical model perspective where they are the ‘expert’. My profession (Educational psychologists) are greatly unappreciated by other agencies due to our loyalties to the parents and child, so much so we keep getting cut and are struggling to keep afloat. My personal opinion is that social work, health, and others within education need to take a look at their practices and amend the way they facilitate meetings and evaluate their own practices further. After all, they all have duties to do what is best for the child and FAMILY and how can they make fully informed decisions without capturing the family and child’s voice effectively?
    Sorry for the rant, it really annoys me that some professionals can make families and parents feel this way. You are never insignificant, so please always voice your opinions and ensure they are noted.
    Lynne

    Liked by 1 person

    • You are spot on Lynne! Any service that seems to side with and support parents seems to get cut so quickly! Thank you so much for reading and commenting and listening to the parents. We need many more professionals like you!

      Like

  9. Welcome to the brave new world of GIRFEC, Named Person’s, Autism Strategies, Shanarri wheels,
    Priority ratings, medical model, practice leads, significant professionals, my life triangles , conferences, experts, welcome to the Autism Industry, where the inadequate budget is spent on layers of meaningless bullshit, designed to make those who make their living from autism and disability look good and pat themselves on the back. Know your place parents and mind your manners while you do it. Take the strain for your child and let us get on with being experts – we’ve got qualifications don’t you know?
    The system is rotten from top to bottom, from bottom to top. Never ever trust a new shiny initiative with a new shiny name or acronym, never trust someone whose loyalty lies with their employer not those they are paid to serve. Never trust a politician or any of the new fangled concepts they introduce when they need to kick the real issue into the long grass. Never expect anyone to do anything actually. Keep your engagement with all officialdom to an absolute minimum.
    Never expect or even allow yourself to hope that the basics will be achieved without heart breaking effort and by losing every shred of your dignity and privacy, stripped layer by layer from your life meeting by meeting, day by day. Welcome to our brave new world of progressive government, social justice, equal partnership.
    The gulf between those living with autism and those designing and implementing policy and providing assessments for statutory entitlements and support is a vast chasm filled with half truths and waffle, duplicitous practices and bad faith.

    Look for support in other places, from genuine people who respect what you do and who your children are.

    Liked by 1 person

  10. Pingback: The Insignificant Mother | faithmummy

  11. You are not an insignificant mother … you are the person who knows your child best, the professionals know this, but they know the system better, and their goal is to help your child fit the system, rather than acknowledge that you child maybe needs a different system.

    I found by taking a folder too, making notes, asking can I quote you on that, highlighting what they said they would do, then emailing and asking when would they have done it by – asking if they could write it down a particular piece of jargon, so I could clarify it made them sit up and notice, asking what that meant when they did they introduced themselves, interrupting and questioning their reasons … if they did not have the evidence to back it up, evidence that would work for my child then I did not have to agree …

    At every meeting, I can take an advocate – I took my partner, but since then I have offered and gone to meetings with new friends … they can take notes, they can question and then it is not a case of them and you …

    Parent’s know best – they know what is best for their child, they dont know the system best – but the system can be learnt (after all that is all the professionals have done) – learning the system does not make them a specialist in how the system will work for your child – you will – along with the experience and guidance you receive from other parents by being open …

    Liked by 1 person

  12. Yes that is exactly how they treat you. I’m not sure they see you as that but they certainly place so little value on you, your experience and time, not to mention the difficulties they discuss, but you live.

    Liked by 1 person

  13. Another professional here, I am truly sorry that you have these experiences. Rest assured that when I read your posts they do make a difference to how I think of and engage with parents. I have enormous respect for you.

    Liked by 1 person

  14. To all of you having gone through these experiences. I know exactly how you feel. We have been working with professionals since my son was three years old. He is now a senior in high school. With our help and perseverance he grew up very well and a lot of the issues he had as a child have been greatly lessened. They are not gone, but he has learned to deal with them. So take heart and never ever let someone who does not know you or your child make you feel insignificant or unappreciated. The little one that you are raising is the only opinion that matters. Never allow someone to belittle you or your children. Be willing to stand up for them and do what is necessary for them. Never give up on them or think that your efforts are in vain. I have been there and been through that. The work you do now will change that child’s life. God bless you all and keep up the hard work.

    Liked by 1 person

  15. I too, am an insignificant mother.
    Love your message, especially the end paragraph reminding them who provides the love and care, unpaid.
    Not so insignificant, your kids would say.

    Liked by 1 person

  16. Every single person who is involved in any capacity where they come into daily contact with families like yours should be made to read this every single day before they start ticking boxes and making desicions for children they actually know nothing about.

    Like

  17. This is so heartbreaking to read. I’ve not had this experience (yet) as the only people that turn up to our meeting are myself, my son’s SENCO & the Health Visitor, who has never actually met Archie so doesn’t really have much to say. YOU ARE the most significant person in your kids life #SpectrumSunday

    Liked by 1 person

  18. This is a really moving post. Because Tyger is considered ‘high functioning’ (what a misleading term!) I haven’t had many meetings to attend but this did remind me of the one I went to.

    You are the most significant person in his life, though. Always remember that. xx

    #SpectrumSunday

    Liked by 1 person

  19. I particularly object to being called Mum and not Mrs…… I was never a person who stood up for myself but now I go into these meetings ready for them! I am not an imbecile, I am an educated person! I’ve learned to hold my own and fight for my child, after all who else will?

    Liked by 1 person

    • As a professional it really saddens me to know (And I definitely did know before this post) That some of my colleagues will think of parents as ‘less’, or if you speak out, as ‘difficult’. I work with adults, where parents are perhaps viewed with even less respect by some professionals. However, please be reassured that for many of us, myself included, your son or daughter is not just a number soon to be discharged. I remember every person I have ever worked with, and would love to know how they are all getting on now. Each and every one of them will stay with me in some way and, when they are on my caseload, will be treated as the amazing individual that they are.

      Liked by 1 person

  20. Hi Miriam
    My husband found your blog and in particular your Insignificant Mother item really resonates with us as we are the parents of a late-diagnosed teenager with high-functioning autism. I am presenting the parents’ veiwpoint (!) at a meeting of very senior professionals planning the local services for children with autism, later this month. I want to give each of them a copy of your Insignificant Mother post – is this OK with you? It will go to an English county council. Are you able to reply to me on this blog? If not, please reply with an email where I can send you my direct contact details.
    Many thanks.
    Serin

    Liked by 1 person

  21. Pingback: Another mum’s story | juvoblog

  22. Miriam, thank you for your post it really moved and motivated me. I have read some more of your blog. As a christian and a mum who has suffered with depression I admire your blog greatly. I am sure you are inspirational to many. Praying for you and your family, especially for Isaac’s vision and care. I have another blog about my journey through depression – you may be interested to take a look. reallyrealblog@wordpress.com

    Liked by 1 person

  23. Pingback: Another mum’s story – Andrea@Synergy-Now

  24. Thank-you for your wonderful post Miriam. This has totally hit the nail on the head with regards to how I regard myself and my role these days. I have two children, who both have complex special needs. We also have endless appointments and very rarely am I asked my name, you are just referred to as ‘mum’ and then mostly ignored. I have learnt now just to interrupt otherwise the professionals never remember to ask what I might think. My 5 yr old is non verbal and has autism and sensory processing issues. My 7 yr old girl has autism, dyspraxia, eye problems and so like you appointments seem to be an almost weekly part of our lives. You are doing so much by writing your heartfelt personal blog and what a fantastic Mum to your beautiful children. So many good wishes to you. Xx

    Liked by 2 people

  25. As a parent myself in this situation I’ve come out of meetings in tears they talk about the positive and help fully me knowing this will not happen two meetings a year most of the time no school funding to pay for additional help now I don’t feel alone I felt I was

    Liked by 2 people

  26. I have meetings exactly like this ,just reading this I’m sitting and thinking yes there is someone else feeling exactly the same as me,I’m not on my own most of the sentences I can fully relate to .thankyou for writing this .

    Liked by 2 people

  27. They didn’t even use your name…. Print this off and give it to those at the next MDT – 40 years I’ve been working to secure parental involvement and am saddened to read this, wishing you and your children all the best, Fiona

    Liked by 1 person

  28. Pingback: The Insignificant Mother – National IRO Managers Partnership

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