Disclaimer: I love my children more than anything… most of the time… apart from coffee… and Easter eggs…
Question of the day:
Why is it nigh on impossible for parents to tell the truth, or rather, the WHOLE truth about life with young children?
I’m a pretty honest person so why is it so hard to acknowledge that there are days when being part of the parental unit in our household is a complete and utter nightmare? Self-preservation perhaps, or fear of being branded ungrateful for the blessing of having children? Whatever the reason, those days that make me want to stick pins in my eyes seldom get a mention, either in real-life conversation or on social media. Like most 21st century mothers, I deal with the ‘challenges’ and then skilfully capture the idyllic moments on camera, ready to share with the world. Case in point: the gallery on my phone contains hundreds of photos of the baby looking adorable when, in reality, she spent almost the entire first three months of her life either screaming or vomiting.
Talking to my own mother (who has been through the process three times) about this phenomenon, she simply laughed and said that parenthood has to be a great conspiracy, or life would cease to exist, which I thought was rather eloquent; for a doctor.
I read recently that parents of children with Special Educational Needs (which can encompass a huge range of medical problems) are twice as likely to develop depression- or anxiety-related mental health problems. Considering the emotional turmoil that comes with diagnosis, treatment and the pressure of decision-making, this comes as no surprise at all. In amongst these more obvious triggers, however, must be the ‘bottling-up’ factor and the sense that we are failing our children by asking for help or feeling angry or resentful about their difficulties and the knock on effects for family life. As the well-known telecommunication company used to say: “It’s good to talk” but it’s also really hard to talk about s**t when you are up to your elbows in it!
So, in these times of economic uncertainty and utterly bizarre politics, I am going to start a revolution and would love for others to join in.
Here are my Top 5 Ugly Truths of Parenting, the Autism Version:
1. Mealtimes are tortuous. A pretty banal one to begin with but a thrice-daily source of frustration that generally involve lures such as sensory toys and the iPad. Rusty in turn has a plethora of evasion techniques, including running off to perform head stands and engaging us in a medley of animal noises. How he has managed to grow into such a healthy beanpole is unbelievable really, considering we still have to spoonfeed him on a regular basis.
2. There is no reason. This is twofold: You can not reason with a child with very limited language and it is therefore impossible to explain why we are doing things or why he is not allowed to do something. Furthermore, he can not express his own motivations, which could potentially allow us to make adaptations or remove obstacles.
3. OCD sucks. However much I try to sugarcoat his obsessional habits as nuances or quirks, the fact is that some behaviours and the entrenched need to follow fixed routines can be very limiting. Prime example: The nursery term restarted last week after the Easter hiatus and the absence of a water table from his classroom sent Rusty into a complete tailspin. This is particularly frustrating because his academic performance is surpassing everyone’s expectations but the prospect of moving him to an entirely new school in the autumn is now even more daunting.
4. ‘Us’ time is a distant memory. Daddy D and I have not spent an evening together, away from the house, in almost three years. Apart from his time at nursery, Rusty is with one or other of us all the time. It is completely understandable – people are worried about being alone with him because they might not understand what he wants and nobody can else predict his behaviour well enough to foresee hazards. The local curry house is the main beneficiary in this scenario.
5. The world is actually not our oyster. There are certain situations which we have learnt to avoid and others that we have never even attempted. The cinema seems like a complete impossibility for a child who can not sit still and such is his reliance on routine that we rarely spend nights away from home. These battles will have to be fought at some point but not yet.
I can’t do it, I can’t finish on a negative! This wonderful verse was brought to my attention a while ago and it beautifully captures my life at the moment.
In the words of the Manic Street Preachers: “This is my truth, tell me yours”
WELCOME TO HOLLAND
by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland