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 By saying how well my child was coping and praising their achievements professional support got withdrawn quicker than the weather changed!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.

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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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Learning to be tomato

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I am blessed to have a beautiful house. It has bedrooms,  a kitchen, a bathroom and a family room. It has walls and a roof and doors. I pretty much get to choose who enters my house and I can choose to close the curtains and blinds and doors and have privacy whenever I wish.

Yet in so many other ways my life is open to all, in full view and often seems like my every move is on show. In so many ways I live in a glass house.

When my children were young babies one of them was not gaining weight as fast as they should have been. We were scheduled to have a home visit every single week by a public health visitor for the first year of my twins life. An entire year of having someone see your children at home every week. Some visits lasted up to an hour. The only concern was my daughter’s weight yet our home had to be opened for unexpected visits at all times. That was the start of one wall of my house turning to glass.

By the time my twins were 18 months we had our first referral to community paediatricians. This put us ‘in the system’ and started more home visits by speech therapists, learning support staff and nurses who all entered my house regularly. I felt like I was on show having to keep my house fit for visitors at any time while trying to raise two very young children. A second wall of my house seemed to quickly be changing to glass for everyone to watch how we were living, playing and raising our children, all because they were not reaching milestones as everyone else felt they should.

Eventually the children began nursery and we were expected to attend courses about parenting and autism and attend regular meetings with the nurseries. As wonderful as it was to learn it also opened my family up to more people, and every interaction with our children had to have a purpose and a goal and we were even videoed several times in our own home. Sometimes it really felt like we were animals being watched in a zoo by all the professionals. A third wall of my house had now changed from brick to glass. As more people saw into our lives it got hot at times and stressful. It felt like there was such a lack of shade and privacy at times.

Three glass walls are hard to handle but while one remains brick and the roof remains covered there was still time to be alone. That is until the children started school. In order for their needs to be fully met we had to enter the new arena of school support. This meant multiagency meetings, school meetings, parents nights, school diaries and homework. Right before our eyes the last of our walls changed from brick to glass and our every move seemed controlled by our children’s difficulties.

Now we are in the realm of requiring more support. As the children have grown and their needs increased things like respite, befriending and budgets are now being banded around. Where you aware of how much of your life requires to be put on the line in order to access these things? There is no ‘sign here’ and we will give you it. Assessments are thorough, long winded and often extremely personal. You have to become vulnerable, lay yourself on the line and be scrutinised constantly. You have hoops to jump through and boxes to tick. In doing so the roof of my house, my only privacy and shade left, suddenly became made of glass too.

So my beautiful house has changed from bricks and mortar to a hot, cramped and open-to-all glass house. In order to help and support my children so much of my life and privacy has had to be sacrificed.

So how do we support them through this when our house has constant professionals visiting and calling and we have so many forms to complete? How do I enable them to have a childhood free from stress and invasion when so many people are involved in their care? How do I cope living in a glass house due to my children being disabled?

We are learning to be tomatoes!

We need the support of schools, nurses, occupational therapists, social workers, speech therapists and others besides in order to fully support our children. That means opening up our home, our lifestyle and our ways to many people. So we are going to use this to our advantage.

Tomatoes thrive in a glass house. While everyone watches on they grow, mature and become ripe due to the intense heat and pressure of living in that environment. Tomatoes are sweet, balanced and healthy despite being subjected to intense heat. They are versatile and popular.

Glass house living when you are raising children who have challenges is difficult, but by becoming tomatoes we can use our unusual circumstances to refresh others in many ways from soups, drinks, sandwiches or even tomato ketchup!

Sometimes I feel cut up or squashed but however you look at it I am blessed.

I am blessed to live in a beautiful house even if at times it seems like it is made of glass instead of bricks.

Just imperfect parents raising imperfect children

I have a confession to make: I am not a perfect mum.image
I just needed to get that ‘out there’ without feeling a failure or weak. The truth is none of us are ‘perfect’ parents and none of our children are ‘perfect’ either. We are all muddling through as best we can. It’s just some of us are under more scrutiny than others.Most families get to raise their children with minimum involvement from others outside of their own family. I don’t have that luxury. And while I am grateful for everyone who supports us it also comes with huge pressure to ‘perform’ and ‘jump through hoops’ at times.
I left another multi-agency meeting this week in tears. While no-one actually came out with the line of ‘it’s the parent’s fault’, there is always a feeling of inadequacy that comes with having children who have ‘extra needs’. Sometimes it can feel like your best is just never enough.
So I just need to get this out:
I am not perfect and neither are my children.

My children throw tantrums often for the craziest of reasons, they have more screen time than they should, sometimes we are still in pyjamas at lunch time at the weekend. I sometimes let them sit right in front of the TV even though I know they shouldn’t, I help them get dressed some mornings for school just because it is quicker and easier, and I have even thought about doing homework for them because I just can’t face another battle (I said thought as not quite mastered the art of writing and spelling like a six year old).
My children have off days.
And so do I.
Just because my children have special needs does not make my family any different to any other. In fact we are probably more exhausted, more chaotic and busier than many other families.
We live in a glass house at times where teachers, social workers and therapists feel they can tell us where we are going wrong and what we have to do to help our children. Sometimes it is helpful; sometimes it isn’t. I don’t have all the answers, but neither does anyone else.
But we are doing our best.
It is easy for others to judge and criticise and ‘guide’. And there are times when someone outside of the situation can see things we just can’t which is helpful and supportive. But on a daily basis we live this.
I know I get it wrong at times. And I know other times I get it just right. Sometimes my children master something new, sometimes they don’t.
Special needs parents are no different to other parents really. But because our children ‘struggle’ in areas it puts pressure on us to ‘fix’ them and support them when all we really are is imperfect parents raising imperfect children.
When we get it ‘wrong’, be kind. When we get it ‘right’, encourage. We are all raising unique, wonderful, individual children with different qualities and skills. And we are all doing it in the best way we can.
My children’s struggles may be obvious but everyone of us struggle, wether child or parent.
Be kind, be supportive, and don’t judge.
Every single one of us are just imperfect parents raising imperfect children at the end of the day.

Pass it along…and leave it to mum

imageWhat qualifications did I need to become a mum? Very little, if any.

Teachers study for years, as do speech therapists, occupational therapists, physiotherapists, social workers and psychologists.

I am just a mum. I don’t mean that in any way to put down what I do. But my role is very different to the specialists named above. My job is to love, nurture, support, encourage and guide my children to become the best that they can be in life.

For my children with additional support needs that means I will be changing nappies much longer than average, still teaching basic sounds and numbers long after others, and spending that bit longer supporting my children (possibly way into adulthood). That I can, and am happy, to do. I will happily spend my evenings singing nursery rhymes, playing board games and doing homework. I have no issue with cooking, cleaning, washing and other seemingly mundane house hold chores.That is what being a parent entails.

But increasingly I feel I am being asked to be way more than a parent to my children.

As financial pressures increase upon the services my children depend upon to support them, there is a current trend of ‘pass it along’. Basically for so many professionals their time with my child is very restricted. Their roles are goal oriented where after a few sessions it is expected they can record progress and show they are making a difference. Then they show me how to do what they have started and move on.

So for example, the speech therapist may visit and introduce some basic visuals. He or she may check my son or daughter appears to understand, then proceed to give me a quick demonstration and hey presto…they vanish off the scene leaving me to do their job! They have little choice really. They have referrals coming out their ears and fewer resources at their disposal. So ‘pass it along and leave it to mum’ is the only way for them to survive.

So now I am a parent and suddenly a speech therapist too. That adds a bit of pressure.

My daughter was finally seen by a physiotherapist this week. She was lovely and very thorough. We now have a much clearer understanding of some of my daughter’s physical difficulties. More referrals will now be made (the hospitals must think we have a season ticket!). When I asked specifically where we go from here I was told that hopefully someone can show the school some exercises and we will also be sent leaflets full of things to do at home too. No time to come and teach me. It is expected I will be able to work it out myself, without all their years of specialist training. No time, no resources, not enough staff. Pass it on; discharge.

So now I am a parent, a speech therapist and now a physiotherapist too? I can sense the washing pile mounting up more and more!

The occupational therapist came this week too. Her case load is more than some schools have on their entire role! There was insufficient time (as usual) to complete the paperwork she wanted to do that day so a pile was left for me to complete as soon as possible. And of course she left us with more practical ideas to support the children. No time to teach but ‘the sheets will explain’…where have I heard that before?

Now I am a parent, a speech therapist, a physiotherapist, and an occupational therapist!

Do I really need to tell you what sort of thing the psychologist meeting was about? I think you get the picture!

Of course I could easily chose just to default and be ‘simply’ mum. But the reason my children were referred and accepted by all these professionals is because there was a need for their services. Their input could apparently ‘add value’ to my children’s lives. They could apparently help us.

So while I am left with not only the raw emotions of finding out my child has yet more physical issues and needs, and passed to yet more health professionals and departments, I am also forced to take on roles I am neither qualified or trained to do.

And when it all unravels and my child still can’t talk or use visuals in years to come, or my daughter is still unable to carry out certain physical tasks or is still crippled by anxiety who will accept responsibility?

They will say the have done their best. They did exactly what the system expected them to do. They passed it along…and left it with mum.

Meanwhile poor mum has little time left just to be a mum. She is far too busy trying to be the professional needed for her children.

It’s just she has no-one left to pass it all along to.

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