I have a dirty little secret.
I like to pretend that my family and I, that we are normal. I know what you are thinking, what is normal? I don’t know for sure, but I know it’s not me and my family.
I have four children, four, gorgeous, amazing boys. I have a nine year old [Oliver] who is displaying various worrying behaviours and has a few medical issues. He has been accessing the school psychologist for almost a year now and we are now at the point where there is talk of outside agencies possibly having to get involved.
I also have a five year old [Zachary] who has an official diagnosis of having Autistic Spectrum Disorder and issues with sensory processing disorder. Then I have a three year old [Darwin] with speech and language delay, difficulties with social interaction, sensory issues and behaviours suggesting rigidity of thought. All of these fall into the key traits of Autism. We are currently going down the route of a professional assessment.
Finally, I have an eight month old baby [ Ezra], he is developing perfectly, which is a huge relief in all honesty. On the other hand eight month old babies are hard work. Teething, sleepless nights, weaning, crawling etc. Babies are pretty demanding, even the most placid ones. As you can see we are far from normal.
However, I like to focus on all the positives and a lot of what we do that is ‘extra’ to what a child of their ages would normally require, is now just our version of normal and we often don’t even realise we are doing any more than other parents do.
I get to pretend.
To pretend that everything is OK. That we are all fine. Then I have a day like last Tuesday, where it just soccer punches you right in the gut. Where it takes your breath away and you can’t hide from it and you can’t pretend to be normal because it is plain to see for all in big, bold, capital letters.
“YOU. ARE. NOT. NORMAL”- Life
It’s Tuesday, just after Midday. I’ve just spent an hour and a half in a meeting about Darwin and his various needs whilst at nursery. Listening to his new targets that will challenge him, but at the same time, with the right support will be able to achieve.
‘Following nursery routines, such as hanging up coat, putting bag away, lining up and sitting at circle time’
Such an apparently simple task that the other children have already mastered, Darwin after six months of attending full time [most children do part time] has still not got this, consistently. I always find these meetings hard, emotionally. It’s never easy to hear how your child is struggling. It also brings back so many emotions with regards to Zachary and our journey with him.
We are extremely lucky, we have amazing, supportive, caring people working with us. I couldn’t imagine any other staff supporting us through all this. They have a real connection with Darwin and our family. They supported and guided us with Zachary, and are there for us once again. They are always so positive about Darwin, the progress he has made and are so eager to put things in to place to support him to help him reach full potential.
But nonetheless it’s draining. I have Ezra with me during the meeting he needs breastfeeding, winding and has some blueberry and pear purée to stop him from crying, he munches away on apple flavoured rice cakes. He practices his screeching and smiling, thankfully the staff all think he is adorable.
I also have Zachary with me, he should be at school but instead he is noisily playing with the free toys from his magazine, cars, a race track, cones, road signs and bridges. He asks the Special Education Needs CO-ordinator to play with him, she obligies, as always. He plays noisily, knocking over jars of pens and folders in the process. I eventually give him my phone and earphones and let him watch some cartoons on YouTube. He sits silently engrossed.
We leave the meeting and head straight to the hospital. Zachary is getting his leg re-casted. He hasn’t broken it, but due to his prolific tip toe walking, which is a direct result of his sensory issues. He has shorten the muscles and ligaments in his calves and is now unable to walk with his feet flat. He is in constant pain. He has been having bilateral casting for a few weeks, but it has had an effect on his anxiety levels and behaviour.
He has been licking and biting his lips to the point all the skin is sore and cracked and needing antibiotic creams, he has also been picking the skin on his forehead and has a huge big black plaster to stop him. None of this is normal right, but at this point I am still pretending.
What pushes me over the edge is, when we are in our local town centre and I end up lying on the pavement, having to effectively abandon my sleeping baby in the pram, whilst I hold my five year, hold him tight like a baby, whilst he screams. The day had been too much for him. Too much change, too many expectations and too much confusion. He can no longer hold it together and right there BAM, right in my gut, I felt that soccer punch.
I think it had been such an emotionally charged day and seeing your child get to the point where they can not physically hold it together, when they get so far past themselves, they lose the ability to communicate and they revert back to behaviour you would expect from a child half their age, it really does hit you where it hurts.
For us it’s not just Zachary it’s everything going on with Oliver and Darwin too. In that moment when I was laying on the floor with Zachary, not really knowing what to do, people staring at us, just holding him, feeling so helpless. I hated all of this, the meetings, the paperwork, the diagnosis, Everything. I hated Everything.
I just wanted us to normal.
On one of the Autism Parenting support groups I am on there was a discussion, asking although many of our children had been diagnosed for a while and we had ‘accepted’ it, did we ever get that feeling of being taken completely by surprise feeling like you have been soccer punched and just having to work through the many emotions you thought you had already dealt with?
There was a resounding yes, some parents said they felt it daily and questioned if we will ever really stop having these feelings. I tend to get this on days like Tuesday when there is no hiding the struggles we face. Normally, I just get on with it. Deal with whatever life throws at me. I often get people saying how positive I am, how amazingly I cope. Please know that is not always true. Some days, I feel floored by it all. I feel like I am swimming against the tide and trying to keep everyone afloat.
I have days where I honestly do not know if I can get up again tomorrow and just continue where we left off today. Some days I have days where I know we are not ‘normal’ and I am not accepting of that, I am not OK with that and that in itself is OK. I am only human and as I journey through this life with my children by my side I know I will experience an array of emotions and I am sure one of them will be that soccer punch to the gut feeling.
I know there will be people reading this thinking my life if a walk in the park. In many ways it is. I am so very lucky in so many, many ways and I try so hard to remember that, but this is my reality and sometimes I just need to say “This fucking sucks” to be able to get up and move on and get back to our daily version of normal…
Whatever it is that makes you or your family not normal, it’s OK not to be OK with. As long as you keep pushing forward!
♥ Do you ever feel like this? Let me know. I’m sure I am not alone in how I feel. I’m already going back to our normal now and the soccer punch feeling is subsiding, but half term starts tomorrow so let’s see how that goes.
Much love and many thanks