Dear Special Needs Parent…Please find time to cry

Dear special needs parent,

I can see behind that false smile, the reply of ‘I’m fine, thanks’ and your happy photographs you post on social media. I need you to know something very important as a parent to a child or children with additional needs: it’s ok to cry.

When you pick that child up from school to go to yet another appointment but you feel you are not getting any closer to answers; please find time to cry. I know you want to ‘brush it off’ as just another day and get on with things. I know you need to ‘keep going for the sake of the children’ as you add another outpatient appointment in your diary for a time you know will clash with the school pick up of your other children but you just don’t have the courage to say so.

It’s ok to admit it’s all draining and never ending.

You don’t have to be strong all the time.

Please find time to cry.

When you feel you are the worst parent in the world dragging your crying child to school because they are not coping and you want to help them ‘sort it out themselves’ because you know ‘this is just another incident and tomorrow there will be something else’ but deep down you still doubt if you are doing the right thing. When you worry about their mental health every bit as much as you worry about their physical wellbeing but you struggle to get anyone to take you seriously.

Don’t let the parent guilt consume you.

Don’t ever feel you are alone.

Please find time to cry.

When your child with communication difficulties is attacking you and won’t stop screaming. When you have missing hours you know nothing about and continually worry something has triggered or stressed them but no-one has communicated that to you so you can’t ‘sort it out’ and ‘make it right again’ like you always do. When you feel like you daren’t breathe incase one of your children has another meltdown and you can’t even use the bathroom without an audience.

It’s ok to want privacy.

It’s ok to feel you have lost control and you can’t make everything right for everyone.

Please find time to cry.

When the system grinds you down. When you feel scrutinised and judged by schools, professionals, and the general public. When you are heart sick of writing forms about your child’s struggles because you are trying to see a brighter future than everyone forecasts. When you no longer have any control over where you child can be educated or what therapies they can get because your child’s needs mean someone else feels they should make these decisions for you. When you feel robbed of everyday life experiences and see reminders of this everyday in social media posts and family occasions, please find time to cry.

It’s not a weakness to cry.

There is no shame is saying ‘this is hard’.

In fact by ‘holding it all together’ you are actually falling apart more than you realise.

So find time to cry.

It doesn’t mean you don’t love your child.

It doesn’t mean you are not accepting their condition or diagnosis.

It doesn’t mean you are any less.

It doesn’t mean you are not coping.

It means you are human.

Dear parent if a special need child or children: do yourself the best favour you possibly can today; find time to cry.

I promise you you will feel better for it.

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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.

The secret epidemic affecting special needs parents

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I had a message from a fellow special needs parent this week. Two words of that message have impacted on me greatly. She wrote:

I’m struggling

It is so common for me to hear this. It is the centre piece of every support group, the most common theme on online  forums, the single most heard words when I meet up with people.

For some of those parents it is so bad that I encourage them to see a doctor for support.

In my years as a special needs parent I have found there is a secret epidemic affecting so many special needs parents and it needs talked about: We need to talk about depression.

Depression in the special needs mum or dad is so understandable but too often goes unnoticed.

People see a mum crying and think she is having a bad day. What they don’t know about is all the other nights she cried in private and no-one knew.

My eyes are more tuned to see people struggling since I have walked that path. I know what it is like to look at my child and worry for his future. I know what it is like to feel there is no hope. I recognise that feeling of failure when you realise your child is just not developing as they should. I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child has special needs and it is ok to admit that.

Society sadly expects us to be positive, upbeat and encouraging and often I see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have so little hope.

When you have a child who struggles in school everyday, a child who won’t eat, or has no friends, or is being bullied for being different, or who can not play in a park as the equipment is unsuitable for their needs, how would you feel? If you child was denied the support they need, or could not communicate, or is living in pain every day would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with autism?

While so many are on medication, and this is vital, we also as a society need to recognise that special needs parenting is exhausting and draining.

Medication is wonderful but what about better support and understanding for our children, better care for those in society who are full time carers, training for staff so they can better meet the needs of the most vulnerable, and a society less prone to judge and quicker to encourage?

The current epidemic of depression among autism families is concerning but what worries me more is that continual budget cuts and ignorance in society is breeding not only depression among the parents but sadly I am now seeing siblings, and even special needs children themselves, struggling with the same issues.

We need to recognise this epidemic and do something about it now.

Don’t ever be afraid to tell someone you a real struggling. Don’t ever be afraid to ask for help. Together we can support each other and help make a better future for us and our children.

 

This post first appeared here.