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 By saying how well my child was coping and praising their achievements professional support got withdrawn quicker than the weather changed!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 Five Signs That Tell Me My Autistic Child Needs Help

My children are autistic. I don’t want to cure them and I love them for exactly who they are.

However life for those with autism comes with extra challenges and for both of my children their difficulties in communicating often mean that the first I realise something is wrong is when we hit a crisis. As hard and heartbreaking as it is for me as a mum to watch my children struggle at times with these five difficulties I know it is so much harder for them. They are trying to communicate to me, and to others around them, that they need help and the onus is on myself, as their mum, and on the other professionals to watch out for these signs so we can intervene and support them through whatever the source of their distress is.

Here are the top five signs my children are struggling:

Sign number 1: Increase in meltdowns and shutdowns.

img_2186-1Behaviour is communication. No child (or adult) has a meltdown or a shutdown for no reason. They don’t just ‘feel like it’ or ‘want their own way’ as many have suggested to me about my children. For a child who has held it together emotionally all day at school, like a spring tightly coiled, is it any wonder when they finally reach a safe environment where they are free from judgement and pressure that they have to ‘let it out’? Autistic adults often have the same struggle as they are faced with working in environments that can cause sensory issues, social misunderstandings and continued demands placed upon them all day long.

Long meltdowns or periods of withdrawal and silence are alarm bells to me that something is troubling my child and I need to deal with it.

Sign number 2: Stopping eating

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This is something that my daughter does far more than my son who would eat his own bedding given half the chance! When your world is out of control and there are so few things you can control it makes sense to my daughter to control what she eats. I know right away if a child has called her names in the school playground, or she got an answer wrong in her spelling test as she will refuse to eat even the few foods that she loves.

 

 

Sign three: Mental health crash

It is blatantly obvious to me that my child is struggling when they tell me they want to die. When you misinterpret social situations, take language literally and face sensory bombardment daily is it any wonder at times that my child feels it is all too much? Signs of a mental health crash in autistic people are exactly the same as everyone else. I look out for not sleeping, loss of appetite, no interest in toys or activities they previously loved and wanting to be alone all the time. For my autistic daughter another sign is not having an obsession. When she tells me she is bored I always check if it is just simply boredom or if in fact her mental health is so poor she is unable to even think about doing anything. Lack of motivation, and no desire to please in my child is uncharacteristic and would make me want to investigate further.

Sign four: Increase or decrease in ritualistic behaviour

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My son has a lot of rituals. From when he wakes and has to bring down every cuddly toy from his bed to his arm chair, from the certain order things must be lined up at the side of the bath when he gets washed, to where he sits in the car..it all has to be ‘right’ or he gets distressed. I am familiar with his home rituals and school need to be fully familiar with his school rituals. If he suddenly stops a ritual he had always done, like the night recently he refused to get his nightly bath, I immediately knew something was wrong. Less than ten minutes later he had a seizure. He has no way of talking and his change of routine was a red flag to me that something was wrong. The need for order over and above the normal level makes me sense something is happening and they need help.

Sign five: Self harming

My son has a history of self harming due to severe communication difficulties and frustration but after a lot of support we have got this to a point where he is safe. However the first sign of him returning to making his skin bleed, or biting himself or banging his head against things repeatedly and I know he needs help urgently. He has no way of communicating pain so harming himself can sadly be his only way to show me his body needs help. It can also become a habit and a sign that his sensory needs are not being met.

 

When I hurt I have words, I have knowledge of who to ask for help and I have experience of being listened to and understood. Sadly many people with autism are not understood. They are belittled, mocked, have too many demands placed on them from a neuro-typical world and face sensory struggles every day. They perhaps find transitions difficult, a simple change in routine confuses them or they have misunderstood what someone said to them.

Just because what is troubling them seems trivial to you or me as a non autistics, does not give me or anyone else the right to say my children’s feelings are not valid.

We owe it to autistic children and adults to hear them and support them regardless how they communicate to us. Look out for these signs in anyone you know who is autistic.

It is often the case of actions speaking louder than words.

A thank you letter to the friend who told me I had depression

My dear friend,

It was just after my children had returned to school after the long summer holidays. The weather was still decent and the house quiet, yet I had no motivation.

Summer with two children with autism had drained me. There just seemed to be nothing left of me to give. I sat on the couch with a cup of tea and logged onto social media. It was my escape.

All you did was start a chat.

“How are you?”

I was fine. Of course I was fine. I was just tired after seven weeks of non stop coping with my children day and night. I adore my children. They were now back at school and routine was re-established so why would I be anything else but contented, happy and relaxed.

We chatted briefly for a bit while I scrolled through pics of smart children in uniforms, smiling selfies and the usual other tweets and statuses. Today I was just not feeling it for some reason.

I was exhausted. I convinced myself that was it. It was the change from having a noisy, chaotic house for seven weeks to having silence. It was the lack of sleep that comes with having children with autism. It was the one too many meltdowns I had dealt with. It was the isolation of summer. It was the facing another school year of my son still not speaking. It was the thought of another term full of meetings, forms, homework, appointments and even more meetings. It was the anxiety of wondering how my children were coping with huge changes and the thought of how they would be when they came home and we had the brunt of all that stress. It was wondering how to reconnect with my husband who I had barely had a chance to speak to for seven weeks alone. A mix of everything; that was what was wrong today. Tomorrow I would be fine.

An hour or so later, and still sitting on that sofa, my doorbell rang.

Of course it was you.

“I’m worried about you.”

So we chatted face to face for a bit. I just needed a down day I told you. Let me catch up with some sleep and get my house in order and all will be fine. Maybe I just need to get my hair cut or something? Perhaps a bit of retail therapy would get my spark back?

“Perhaps you should go see your doctor?” You said.

Why would my doctor want to see me? Antibiotics or painkillers won’t help me. I don’t feel ‘ill’?

“You may be depressed?”

Who me? Really?

I called the doctor in the end, if nothing else just to get you off my back.

Thank you for pushing me. Thank you for caring enough to reach out to me. Thank you for noticing me struggling.

Yes, you were right, I was depressed. I never expected that. Maybe you did? Maybe you were able to see something I couldn’t?

I am not sure if you remember that day as much as I do? It was seven months ago now but it changed my life. The doctor gave me tablets and I am so much stronger, more motivated and happier now.

One day I may be well enough to come off them. For now the stress and strain of everyday life with two young children with autism means I need them. I am not ashamed of that. Why should I be?

I am just ashamed I never sought help sooner.

I will never forget you my friend. I have not seen you in person for a while now but you were there at the right time and I am grateful for that.

You taught me to look after myself. You also taught me that sometimes love and care means stepping out when you think someone is struggling.

I just want you to know that I am looking out for others now just as you looked out for me.

You taught me that sometimes others can have an insight that the person themselves can not see.

You taught me that friendship and social media can be a way to spot things in others and help them.

You were more than a virtual friend, you were there when I needed you.

Thank you again.

I really hope all is well with you and yours.

In gratitude forever,

One of your social media friends.

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