There are many things I thought I would never experience as a parent. A long time ago I was guilty of being that ‘judgy’ parent. I would be the lady silently assuming that your child, the one kicking and screaming in the supermarket was plain and simply spoilt. I would see children lashing out and screaming in the faces of their parents and I look on in horror thinking ‘my child would NEVER do that.’
‘I would never be THAT parent’
Fast forward a few years and suddenly I am ‘that’ parent. I am the parent of an undiagnosed Autistic child, bent down in the fruit and vegetable aisle, trying to console her hysterical son, who cannot cope with the hustle and bustle of doing a simple shop. The lights, the sounds, the smells, the crowds, the queues.
I am ‘that’ parent whose child is kicking and hitting me in the street because there has been an unexpected change in our day, because I’ve stopped on our journey to speak to someone I know or because he’s struggling with understanding his emotions and he can’t process why he’s feeling that way.
I am ‘that’ parent who often uses screen time as a babysitter so I can go to the bathroom or cook them their dinner knowing they are safe and occupied and less likely to fight and argue with their siblings.
I am ‘that’ parent who would let her child have plain pasta on it’s own for dinner because something is better than nothing and who quite frankly is tired explaining to people no, he wont eat when he’s hungry.
I am a mum to potentially three children on the spectrum. Sonny is most concerning and at the age of 5 and a half has been excluded from school this week for the first time ever. He is over 18 months into a waiting list for Autism assessment.
Yep. I never thought I would be ‘that’ parent either. None of us ever do and yet suddenly here we are.
Family life for us has been incredibly strained during recent months. Sonny often wakes early in the morning with a hatred for the world. He can start an argument with himself in an empty room and lord knows what happens when one of his brothers goes within arm or leg (or throwing) distance.
My little boy is angry. He’s frightened and scared and ashamed and embarrassed. Underneath the anger is a little boy who is desperate to feel ‘normal.’ A little boy who when the bombs have blown and the dust has settled, tells me he is so very sorry and that he loves me and gives us all cuddles and kisses. My heart breaks for him and I cry.
Sonny hasn’t found his feet since starting year one in a mainstream school. He was doing so well in reception, we were having brilliant days, weeks, months even! I had begun to think we’d nailed it. Onwards and upwards from here on in?! How wrong was I.
I made the mistake of underestimating just how much major change effects those on the spectrum. Sonny has had so much to deal with since starting the new academic year and now we are entering the Christmas period, things are on a permanent simmer.
Sonny’s behaviour has been spiralling out of control over the last few weeks. The level of bad language and violent outbursts has increased by tenfold. Every last ounce of my energy is spent keeping Sonny from self harming or harming others and I can assure you now, exhausting isn’t a word that quite cuts it.
Sonny isn’t coping with the demands of a full day at full time school. He isn’t receiving full time 1:1 support at the moment, only in the mornings. He has multiple changes every afternoon and this is happening on a daily / weekly basis. What can we do about it? Absolutely nothing!
No EHCP. (don’t even know how to get that started)
No diagnosis. (18+ months on a waiting list)
No chance of a private diagnosis. (costs thousands)
No external professional input. (need diagnosis)
No special needs school. (need diagnosis)
No additional funding. (need diagnosis)
All we are doing is treading water. Flailing in the ocean doing the very best we can. It’s not enough anymore.
This week, Sonny’s outbursts has escalated to the level in which his school thought it necessary to exclude him for a day. For throwing objects and chairs, for being destructive towards the school environment and violence towards children and adults, While I completely understand the importance of the other children at his school being safe and unaffected and while I understand the severity of all this, what does excluding a 5 year old little boy on the spectrum achieve?
Only after our day yesterday do I fully understand.
Further change in routine.
Further anxiety when Monday comes back around, taking another 10 steps back.
Showing him that it’s okay because kicking off and melting down leads to time off school.
…And if he doesn’t understand it, how can he learn from it?
I still had to take his eldest brother to school. I had to take my Autistic son TO school, TO the school office entrance to collect work for him to do at home. I had to take him home along with his little brother on a Friday. (We’ve only just mastered days of the week and that is so he is comfortable knowing which days I am at work and that he associates every Friday with pizza for lunch at school.) He was angry, confused, he was telling me he hated me and he kicked out at me whilst standing on the buggy board. Zachary was crying to get out and walk because he normally walks home on the days the others are at school. Him and Sonny have to stay on the pushchair so I can guarantee his safety.
I had to sort emergency child care, changed my entire morning to make sure it was possible for me to go to work . Thank heavens I have some amazing people in my life who are there to help me when the donkey doo hits the fan. I got home from the morning school run and collapsed on the sofa in tears whilst Sonny and Zachary built a train track together. I felt like I was the one being punished. I haven’t done anything wrong and I commend everyone raising special needs children because there is no ‘how-to’ guide and there is little support out there and it’s crushing parents left right and centre.
Excluded from school because his behaviour didn’t seem to relate to his disability.
Surely any and every behaviour like that is related. Behaviour is communication, there is usually always a trigger and trying to unearth what it caused it is like searching for a needle in a hay stack.
One thing is for sure. What my son needs right now is more love, more reassurance and twice as many cuddles. He needs patience and calm, guidance and more understanding and more importantly acceptance than ever before. He will get all of that from me and I won’t give up on him even if others are.
Who is SEN exclusion really punishing?