Parenting on another level.
I’m a 37-year-old mum, my eldest child from a different marriage is neurotypical which means he is not on the autistic spectrum and nearly reaching adulthood at 18 years this year. His childhood looking back on it now was very straight forward. Don’t get me wrong – we had our stroppy teenage moments and life raising a child always has its worries, but on the whole, things ran smoothly. I would take him to school, drop him off and go to work, he would attend school clubs or go to friends houses for dinners. Things were just normal I guess.
Then things changed, I fell in love, married again, took my second chance of happiness and had a beautiful baby boy who would change me for the better but cause me to inherit the middle name of Worry.
Parenting a child with special needs is on a completely different level. I thought I was tired with the few sleepless nights in the first few months after having my eldest child. Trying to manage sleep with an autistic child can be extra tough even when they’re at the age of 8 years old. This is not to mention the fight that you will constantly have inside of you, to make sure that your child is fully understood by those around him at all times in order to make his day go well. It can be tiring and exhausting but when you see that smile at the end of the day you know you’ve done your job as a special needs mum and it’s all worth it.
This is when I thought of writing this blog, this morning on my car journey. I have a 4-hour round trip travelling in the car to my son’s specialist setting, a lot of time to over think which doesn’t do me any good, but as I was taking him this morning I was thinking that I just hope he has a great day at school. There are so many obstacles that can get in the way that may cause his day to turn upside down. So when we get a good day I feel like we have hit jackpot.
It seems that the majority of bad days are when school is thrown into the equation, although I am not saying everything at home is always perfect. However, from reading and learning the ways to deal with PDA and taking all the strategies on board, home is a good place for him now. Although, we can step out of the door and things can turn wrong, but with me by his side I can generally de-escalate any meltdown that is brewing.
So when I’m hoping for my child to have a good day at school I’m thinking of this sort of thing
I’m hoping that an adult doesn’t use a sharp tone in their voice – he struggles to understand tones and can perceive them as shouting at him even if they’re not.
I’m hoping that a teacher doesn’t tell my child to shusshhh in assembly as he talks to his friend, it’s taken a while for him to want to participate in assemblies again after the trauma he had at mainstream. He thinks “shush” or “be quiet” is whispering, he takes things very literal so wouldn’t stop talking like they may want him to, he would just whisper instead. He may need to be told directly that there is no talking allowed. But then, this is a demand which can unsettle him. The teacher who tells my child to not do something has to pick her words carefully so that this doesn’t trigger a bad day.
I’m hoping that he has enough space in the classroom and no one nudges him or trys to lead him by the hand, he hates others touching him, he still holds a lot of trauma from being restrained regularly at mainstream school, he sees being led by the arm or hand as someone taking control of him.
I’m hoping that at lunch the cook doesn’t pour too much cream or sauce on any of his food, he finds creamy textures disturbing, he will get upset by this and go hungry.
I’m hoping that he doesn’t get hurt today, going to a specialist school with children with social and emotional problems can be a balancing trick but the majority of the time he understands and appreciates that another child may be struggling, he forgives easily but it’s still upsetting.
Schoolwork can be a struggle if he feels he can’t do something. He won’t sit there and be quiet he will be vocal, he needs that special supportive adult to bring him back down to earth and convince him what he can do and to help him achieve.
These are just a few points that could turn my baby boys day upside down, the key is for others to understand him, but even at a specialist school, and they do listen to me, they are good but they’re not his mum.
Walking on eggshells – This morning is the first day back to school after the weekend. I know school on a Monday morning is always tricky so I try to think one step ahead! What will make my child smile and set him up for a happy day? After all, all I hope and wish for is a happy boy! I know – pancakes! I hear him walking down the stairs his footsteps loud, he’s most probably still half asleep, “Morning sweetheart” I shout, I’m greeted with a moody face. “It’s school isn’t it?” He replies. “Yes, it is and I’ve cooked your favourite, pancakes.” Result – I see a smile appear and we have a happy child on side! Phew! It worked. If I can start the day by turning that frown into a smile then we’re doing good.
So when you drop your child off at school I often think of the other mums and if they think like me, I am a worrier at the best of times – an over-thinker. The mum of a special needs child worries all day, even after the battle of getting an EHCP, even after getting a specialist school, no one knows your child like you.
When you hope in your head that your child has a good day at school, it’s not about hoping that he will get top marks on the spelling test or hoping that he gets student of the week award. My hope of a good day for my child is to be understood fully, it’s tricky but with the right understanding doesn’t have to be.
So if he comes home and says he has had a good day, I know everyone around him has tried super hard and a good day is always worth celebrating.