Why? Although undiagnosed between my twin 5 year old boys the two appear to share behaviours of ADHD - Attention Deficit Hyperactive Disorder, SPD - Sensory Processing Disorder, ODD - Oppositional Defiance Disorder and Asperger's Syndrome.
For so long I had fobbed the problems off with "oh they are boys" and "they play off each other". I was once won of those people to say it is a made up illness for naughty kids or an excuse for bad behaviour. Yet this could not be farther from the truth.
This year my son was smashing china bowls at the fireplace, upturning tables (with our meals on ), kicking in the wall, absconding constantly and running across roads without looking. Hitting, kicking, pushing the list goes on and on. My boys were suspended from their preschools and we were sent to behaviour therapy. The paediatrician said he was acting out as a result of my relationship break up. As expected behaviour therapy didn't work. He just never responded to any discipline or consequences and no one listened.
Judgemental professionals blame my parenting and blame my relationship break up. I lost friends and people made assumptions without knowing. It was extremely hurtful emotionally and my stress levels soared.
As a parent I found my stress came out as illness like getting the flu. I couldn't cope doing even the most simple tasks , like opening my mail, paying bills or checking on Face book especially seeing friends having a great time.
Without any support I noticed consistent signs meaning well support workers refused to see. My boys became isolated and unable to play with other kids as sound and touch bothered them. Banging their heads, screaming and severely lashing out with any change and transition - even minor ones. Needing sensory stimulation , yet having heightened reactions to everyday stimuli, tip toe walking and more. As a parent I felt confused, alone and ashamed.
I found I blamed my boys for their actions and got angry at them.Our family life became one of anger, stress and entirely out of control. After a moment of clarity I realised the boys have no control over their dysfunctional behaviours.
I needed to STOP the anger toward my boys IMMEDIATELY.
I was quietly wishing everything would go back to how they were as babies. When I thought they were "normal". These thoughts were damaging. Because, what we think about we bring about, and suddenly I started to lose my beautiful 5 year old boys. They stopped growing up. They stopped learning and engaging with others.
My anger, gave me a sense of control over a very dysfunctional situation all be it a false sense of control.It is easy to target the weak, I stopped my anger and blaming and practised acceptance and love instead.
What does this have to do with YOU the stroke survivor?
After having a stroke 31 years ago, I have always been the "disabled one" with my family caring for me. My family members did their caring part, yet also struggled with frustration and anger toward me. Put simply they didn't understand. I was an easy target as a 10 year old stroke survivor. I too blamed my family for victimising me yet I became THE VICTIM.
I get it. Some of you are experiencing real abuse from your care givers that you never had before your stroke. It is hurtful, it stunts your recovery and diminishes your self esteem. It is nasty, uncaring and unjustified. You don't deserve it! Especially after such a traumatic event.
Your family is minimising your pain and asking you to do to much. They don't care that you are tired and don't understand why you won't just go back to work. They are not helping you through your pain but instead criticising and blaming you for the stroke.
Yet here's what I learnt through my experience as the parent of two boys with additional needs
This cycle of immature anger and blame from all involved holds you back from independence and freedom. Because you FEEL you NEED them.
Talking as a parent who has children with additional needs, this is what I learnt:
- When your family is being unkind, it's not because they don't care, it's because they DO CARE.
- They are frustrated and just want everything back to normal, they want the "OLD YOU" back.
- Remember we are creatures of habit and CHANGE for anyone can be hard.
Our caregivers don't understand why they are behaving this way. Yet it is our responsibility to RISE ABOVE IT.
So, how do I "rise above it" when my family has changed so much toward me?
Shift your mindset and put yourself first. Well that's easy for you to say, I hear you saying ......but.
- Firstly realise they are doing this because of their pain. There is no rule book on how to process grief after as stroke and all of us just fumble our way through the mess - some better than others.
- Second, be the person you want to be treated as. For example, if you are passionate about wearing jeans. Wear them and don't wear shorts because someone else tells you to.
- Third, DON'T react back with anger and blame.
- Know that their anger and frustration is normal and is only temporary.
- Stroke is a journey of recovery for everyone.
You are a miracle. You have survived a stroke. Learning to thrive beyond stroke makes you amazing.
Learn to become a Thriver. You can.
To find out more about Kate Elizabeth kateelizabeth.global
and find us on face book @stroke thrivers group and @thriver.global and linked in @Kate Elizabeth
Since writing at the beginning of this blog, although my boys are still not diagnosed, I have received clarification from 4 professionals that they are on the autism spectrum. What a relief it is to be heard and valued. I am over being judged for being a "bad parent" and judging teachers saying "they need discipline". To be heard, to know their condition is NOT MY FAULT and to love them despite their disability is an absolute privilege to me. As a parent, to know I am not alone after months of being told I am the problem is a relief. From heartbreak and despair we can move forward with our lives.
The opportunity to move to a happier place with your family is on it's way.