When The System Damages The Very Children That Need Support

I am not sure what I thought would happen the first time I had an appointment to take my children to the paediatrician. I guess maybe some basic physical checks like height or weight or maybe some referrals on to other professionals or departments. I naively expected that appointments to help my children would indeed help them and not impact on their mental health years later.

That first appointment was my first introduction to the ‘system’. For anyone not familiar with how things work in the world of special needs parenting we are given appointments where we are expected to take our children along while strangers smile at them, perhaps say a few remarks to them, and then they are expected to sit quietly while the adults discuss them.

Even when my children were just toddlers this never sat comfortably with me.

My children may have complex needs but one thing is certain: they can hear perfectly well.

So for years I have taken them to paediatricians, specialists, therapists, neurologists, nurses, educational meetings, had social workers in my house and they have even been taken out of class at school to attend school meetings about them. In every single one of these situations, for years and years, they have heard adults discussing their diagnosis, their difficulties, and their struggles, all the time while they have had to sit there and listen!

Is it any wonder so many of our children with additional needs go on to be diagnosed with anxiety and mental health problems?

Why are we allowing children to hear such negative talk about them all in the pretence of ‘support’?

I tried to keep it positive but it backfired. By saying how well my child was coping and praising their achievements professional support got withdrawn quicker than the weather changed!

I realised I needed to be honest about the struggles my children had in order to secure the right support, but this has come at a high cost: my own children’s mental health.

Years of hearing everyone around them talk about them like they don’t exist, years of hearing their autism spoken about like it is a thing to be disgusted, years of all the adults who should be inspiring them criticising them instead, years of hearing their own parents highlighting nothing but their weaknesses takes a toll on them.

I hate what the system has caused.

We ought to know better. Research has proven so many times that children (and adults) need encouragement, positivity and belief instilled in them. They need adults around them to see them as valued, precious and wonderful. That IS how I see my children. Yet in order for me to secure any services to support them I am faced with an awful dilemma of having to talk about my children’s struggles while they are in the same room and can hear every word.

The system, designed to support our most vulnerable, is in actual fact making our own children ill.

Please don’t think I haven’t tried to protect my children. I have tried all sorts from technology with headphones, to arranging care so they can leave the room, to even asking for meetings and appointments without my children present. The latter very rarely happens and my children are not daft. They know we are talking about them regardless.

I understand there are times medical professionals, education staff and social workers do need to physically see my children but could this not be done separately to protect young hearts and minds? Apparently this is not common place at all, well at least not in my area.

So 8 years after that first paediatrician appointment what has changed? Well we have had literally hundreds of appointments. Both of my children have long lists of names of professionals who have met them, talked about them or treated them. I have drawers full of paperwork. I still have a diary full of appointments. Yet what is the hardest of all to cope with is that I have two children who have anxiety, mental health struggles and low self esteem and they are not even ten yet!

What concerns me more is that my children are just two of millions.

We must do something now to change this. Children should not be sitting playing while adults discuss their difficulties EVER. It is unprofessional, cruel and causing long term mental health problems.

What sort of society are we when the system mentally damages the very children who need our support most?

While you think about that I am busy trying to rebuild my babies.

15 thoughts on “When The System Damages The Very Children That Need Support

  1. I honestly had no idea things could be like this.

    I can only speak from personal experience, which I realise is quite different to your family’s, but I have found that professionals have gone out of their way to ensure the children are *not* present except when direct work is being done one-to-one or as a family unit, for this kind of reason.

    Naturally, medical appointments they have to be present, but as much as possible are involved in the whole process. The irony for us is it meant we couldn’t have a whole load of progress meetings during the summer holidays because our children were around too much!

    I quite agree with what you write, and it’s painful to think this is happening with such regularity, particularly given what many of these professionals must already know about child development and the like.


    • So pleased to hear not everyone has experienced what I have. Sadly from other comments already it seems my experience is very common which as you say is very painful.
      Thanks for commenting and reminding me that sometimes more thought is given and professionals do get it right.


    • I’m glad to hear this is your experience and it gives me reassurance that it does abd can happen.
      Its been 4 long years for me and now the negative impact is more evident now more than ever.

      I will be more vocal in the future and I hope after my recent experience they will be more mindful about kids being present or not.


  2. This hits the nail on the head, reading this reduces me to tears as this was my experience this summer with two of my 3 children.
    Hearing everthing they had to say while trying to calm a very distressed child because he didn’t like the room, the people in it staring at him and the broken lighting and funny noises comibg through the walls….he was distressed I was distressed and by then end I just sat and cried….I have never shown this kind of emotion in these meetings or with my children present but my eldest who was with me was taken out the room but the meeting definitely leff her even more anxious and concerned for me and less trusting of those put in place to support us because they made mummy cry.

    It definitely needs to change, they don’t need to know what they have difficulties with they live with them every day what are children need to hear and see is what they are doing to help them cope and see support for the whole family.

    Liked by 2 people

  3. I can’t believe this is still happening. I refused to take my older son to appointments unless he needed to be seen. With my younger son it’s the same. I spoke to the doctors at one appointment and said I can provide his height and weight so they needed to tell me if he was ever scheduled an appt where they needed him otherwise it would just be me and his dad coming. Other meetings are scheduled elsewhere or if at school there’s a separate entrance so no child can see you go in. I refuse to discuss him when we have parent/child play dates in school.
    It always struck me too as being damaging to be talked about while you’re in the room, we wouldn’t like it so why is it ok for sn kids to be talked about? Short answer – it’s not! I thought things might be getting better but obviously not. Well not in every area unfortunately.

    Liked by 1 person

    • My experience has certainly been that if I do t take my child with me they refuse to see us! And if I keep talk positive because the child can hear they discharge us! I wish more areas where like yours!


  4. OMgosh this was like reading my own experiences, I have felt like this since my Son now aged 33 was a toddler. The agony of having to try to explain to anyone what he struggles with in front of him has put me in tears of despair, I know talking in front of James in a negative way makes for a very uncomfortable few days at home after the appointment, he blames himself for having Autism and OCD, the fact he heard me when I had the courage to speak up upsets him to the point of having to go straight home and he goes into his room, his safe place, for hours and hours. I am his sole carer and I struggle immensly with this problem even to this day, he needs to hear positive things not hear someone talking about his many problems, if he is asked to join in a discussion and is asked a question about his difficulties he replies with an answer he thinks the person wants to hear, just to get out of having to be there. Thank you miriamgwynne for bringing this ‘out in the open’. I thought I was the only one. xx

    Liked by 2 people

    • Your son sounds a lot like me. I now really struggle in meetings even if they aren’t about me, as at school and medical places they tended to be so critical that that’s now what a meeting is to me.


  5. Isn’t it sad that this is still going on. I wrote about this is 2014. I hated it then and I still hate it. As not so long ago we had exactly the same situation. It is time that health professionals stopped doing this. It makes me so mad that as parents we are then left to pick up the pieces and build our kids up again. I hope you are all ok! (Link to 2014 post if you are interested. 😉 http://www.spectrummum.com/2014/10/time.html)

    Liked by 1 person

  6. Absolutely. Exactly. On the button. My son (the more medical one) keeps telling me that there is no point being there. He does not understand the “doctors’ codes”, he gets bored and he hates missing school. That is the tip of the iceberg. The big part is the unspoken… the bit about the fact that we are there only because in some way he is broken, lacking, wrong. This year, his health has been more stable, and I have postponed, cancelled or gone solo to most of his appointments. I have had a few on the phone, I have explained that he will not attend an appointment with a locum, ever, and I have made sure that he knew nothing of all of these. At fifteen, he also now needs to begin taking responsibility for his health care and there are some vital things he will need to do. So anything to do with his heart is taken very very seriously… same with the haemophilia department and endocrinology. Anything else, I am now a little lackadaisical. Because fifteen years of exactly what you describe have damaged him, probably to some extent beyond repair…

    Liked by 2 people

  7. I totally agree and know of many others whose kids have been very upset following appointments with their self esteem crushed. I have often said to CAMHS I don’t feel my son should hear me talking about his difficulties. It’s caused many a meltdown and who knows of the long term psychological damage. Just before the summer holidays I stood my ground and insisted that I speak to the doctor alone so I could speak freely. They complied and had a playworker take him into the next room. I get they have to see him and talk to him but there should be a time where the parents can speak freely otherwise what’s the point in having the appointments.

    Liked by 1 person

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