Having waited a year for my "Emergency Counselling" to materialise, I finally got a call in the Spring offering me 12 counselling sessions with best wishes from the NHS. It was something I'd been hanging on for with the tips of my fingers for some time. I fancied a weekly session of primal screaming with a lot of wailing and wringing of hands thrown in. It's been a long four years and I've had some wobbles along the way so it seemed like a softly spoken, emotional enema was just what the doctor ordered. The scene of the crime was to be none less than the Priory so I felt truly rock 'n' roll.
It really has been an emotional rollercoaster - from the utter despair of seeing J having his first seizure as a tiny baby and subsequently being told that he'd probably never walk or talk; to the secret, intense hope that he'd be one of the 5% of children who come out of Infantile Spasms completely unscathed; to the complete joy when the seventh hard-core drug we'd tried had stopped his seizures and he was able to roll, then crawl and then walk; to the start of the next chapter when, although we already knew it in our heart of hearts, J was diagnosed with Autism.
People often say to me that they don't know how I do it - it must be so hard to bring up a child with Autism. I never know what to say to this without sounding rude, but there really is no choice. He's my son and I adore him. I'm not the only mother of an autistic child (everyone seems to know someone that is affected). You just get on with it and take the rough with the smooth and hope to get through the days in one piece. I'm certainly no saint and I often wonder whether I was cut out for this job at all. I'm poorly qualified to keep up with the need for routines and sameness - a domestic goddess I am not - Autism aside, I was never going to win prizes for baking, hoovering or insisting upon the Teddington-norm of golf and drama lessons for my kids. I'm more Captain Chaos than Nigella but I do genuinely enjoy being with my boys and I love them fiercely so we muddle through somehow and keep our heads above water most of the time.
There is a grieving process that can be applied to any loss - of life or of expectations. With a child with special needs, the grief is for the loss of dreams you'd envisioned for your child, the loss of normality and the loss of being able to take anything for granted. Nobody can predict the future for their children and no amount of Playstation/TV and E number bans can prevent a kid from becoming a crack whore when they grow up if they're so inclined. But it's the little things like riding a bike, having friends and being able to tolerate being in a public toilet with a noisy hand dryer that would be a good start in terms of future goals for someone like J.
So back to this grieving process. It goes something like this:
1) Shock and Numbness. Tick and Tick - not a good feeling. Not a good look.
2) Yearning and Searching. Anger and Guilt. Again Tick, Tick, Tick and Tick. The why oh why's, the desperate googling, the blasted environmental assaults and the "why, oh why did I give him such a murky gene pool?" rants.
3) Disorientation and Disorganisation. Depression, more Guilt and Unfamiliarity. Ticks all round. The feeling of breaking into a whole new world we hitherto knew nothing about, the what nows?; and, oh good god, the disorganisation - if I had a pound for every item I'd displaced - the cheese in the cupboard, the crackers in the fridge, the shoes in the washing machine, and then the plastic bag that operates as the filing system for all paperwork; the terrible palpitating guilt and the feeling of knowing nothing about your child's inside but knowing every little hair and freckle on their outside.
4) Reorganisation and Resolution, Increased Energy levels, Increased decision-making abilities and Increased self-confidence. All good stuff - a couple of ticks on a good day here of late. J has been officially Autistic for a year and a half now and we're learning the ropes. That doesn't make it easier really. Just more predictably unpredictable. And I think we're discovering where we stand on all the miracle "cures", diets, schools and systems. Put it this way - I'm not going to forcefully shove 40 different supplements per day down J's throat without knowing exactly what they are and what is going to be achieved by doing that to him.
The good news is that time really is a great healer. It is possible to get from number 1 to number 4. The bad news is that Autism is for life and not just for Christmas so, us parents of kids with Autism and other special needs will continue to dip in and out of this cycle with every stage of our children's development and every time their peers celebrate reaching milestones that will take our kids a zillion times longer (if ever) to reach.
So what is the point of this Counselling lark? It won't cure anything. It won't stop me feeling this incredible whirlpool of emotions. But it is making it clear to me that I need to remember me. I need to remember that I'm only human and I will most certainly screw up from time to time but I need to put those boundaries up that prevent me from thinking of nothing more than the trials and tribulations of my boys. Apparently it's almost a given that most mums of autistic kids become totally co-dependent on their little ones if they're not given a Priory-sized boot up the arse to remember that they (and their families) are worthy people too. So I will try to make time for myself. I'll endeavour to stop being such a control freak all the time. And, by the power of Greyskull, I will not gaze at my navel in a depressive, guilty manner too often....!
But if I could put some words on my coffee cup, or perhaps tattoo them onto my forehead, they would be as follows:
Give me the grace to accept the things I can't change, the courage to change the things that I can and the wisdom to know the difference.
Rock 'n' Roll!
