I return to the day in February 2013 when the OT's report was in my hand. I read it and reread it a hundred times in the space of an hour, trying and failing to take it all in. It wasn't the magic diagnosis, we would need the paediatrician for that, but it was very clear about his strengths and his difficulties. I could only see the difficulties.
I did all the right things with the report on a practical level. Immediately I emailed copies to his teachers, liasied with Julia, the OT, about coming into school to discuss the day to day implications. I wrote lists of who needed to know, I sent copies to family and friends, website links for them to look at with any questions they might have. I cocooned myself in this little nest of activity and practicality and, when I was sure all that was done, I got on with the real business, the business of feeling and indulging a mother's guilt.
Suspecting, or even knowing your child has difficulties is one thing, but seeing it written down in black and white is entirely another. After I absorbed the report I felt many emotions; relief was in the mix and a real desire to move forward, to put the most appropriate support in place. But the one that kept coming back, that moved over me time and time again was the overwhelming love for my Moglet number 2, coupled with an equally powerful sense of guilt.
I was experiencing guilt on so many different levels. There was the whole "How-could-I-not-have-got-this-sooner, -I-am-a-teacher-for- heavens-sake?" guilt, which I had been feeling throughout the process, but was now magnified to ridiculous levels. I had visions of all the children I had supported in my life skipping happily around, diagnosed and empowered, all getting exactly the right support, while my son was there miserable, struggling and failing. Of course, that was so far from the truth, but as most parents know lying awake at 3 o'clock in the morning, 'thinking' is often not the best stamping ground for the truth. It was like watching an amateur Tim Burton film, everyone in black and white and bit damaged and miserable.
Then there was the "Well-that-explain's-the-time-when?" guilt, that went nicely with "How-could-you-have-got-cross-with-him-when-that-happened-guilt?" and the "You-handled-that-very-badly-didnt-you-guilt?". It was a whole new way of torturing myself, looking back at things that had happened in the past and regretting them. It was possibly the most counter productive aspect of the whole process but I just couldn't stop. I fell into the trap that most mothers do, believing that some how motherhood endows us with superhuman powers to see the future, prevent our children from feeling any harm and shoulder all burdens that come our way. Of course, its absolute tripe, and in our rational, sane and considered moments we all know that, but I guarantee I will be clambouring in and out of that trap for the rest of my life!
Moglet number 2's lovely teacher approached one morning after reading the report and exclaimed, "Oh, my goodness, I feel so guilty. All those things I expected of him, that were so hard for him!" Her concern and consideration were genuine and so was her desire to move forward. Yet all I could say was " How do think I feel? I'm his mother!!"
Then I began to move forward in to the "So-where-did-this-come-from-or-what-caused-it?" guilt! Another new subgroup! Was it something I did/didn't do in pregnancy? Was the fact that on the day Moglet number 2 was born his brother was on the children's ward with gastroenteritis linked? Was it linked to the fact I had to stop breastfeeding him at five weeks? Had I dropped him on his head and blocked it out completely? - All completely bonkers questions, and again typing them now of course I can see that, but I refer you once again to the witching hour, when the rest of the house sleeps and you are alone with your imagination and guilt for very dodgy company.
And hey! I haven't even started on the whole "is-it-genetic?" guilt! I wasn't alone in this one; playing 'Spot the other dyspraxic in family!" became a popular past time for a while. No one person was free from scrutiny, and no firm conclusions were drawn. I gave myself a particularly hard time, once again. I mean I was messy and always rubbish at sport, and was I clumsy? Again, a pointless exercise! Everyone in the family was happy with their lot, no one was seeking a label, no one needed one. Time to put that game to bed!
The final guilt is linked to acceptance. The acceptance that your child has a specific learning difficulty. That is now an indisputable fact. You have asked the question and you have got the answer. It doesn't mean you love your child any the less, in fact with your guilt dial turned up full and your overprotectiveness raging, you probably love them more than you ever did before. Yet there is a part of you that is struggling with the concept that things aren't quite what you thought they were, or hoped they might be. If you are honest, you don't want your child to have to face those difficulties every day of their lives. And, what if it does stop them doing something they really want to do? But you feel guilty even thinking this, let alone saying it. I mean they are your child! How can you doubt them? How can you question their future?
Here the guilt needs to stop. This is real and valid response to any diagnosis, it's extreme uncertainty and it is coupled with a kind of grief. I have seen so many parents over the years struggle not only to come to terms with their child's difficulties but also find it impossible to express their struggle, because of the guilt they feel.
A few years ago now a colleague shared a piece of prose with me. It is well known and many of you will have seen it before. I have used it many times with parents and carers over the years, and often it has helped, sometimes in a big way, sometimes in a small. I will share it with you now
WELCOME TO HOLLANDby
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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.
This piece of prose, or the spirit of this helped me. I dug it out early one morning and read it several times. Later that day I received an email. It was an email from my closest friend. The one who I had started my teaching career alongside. The one whose classroom was next to mine in the very challenging SEN school where we had landed as NQT's. The one who had opened the connecting door at the end of our first day of teaching to find me on the other side, uttering exactly the same expletive at the same time. The one who had her babies just weeks apart from mine. That 'go-to-get-it-all- no-need-to explain-friend'. She got it and she sent me the message I needed.It sits today in my saved email archive. Forgive me lovely lady as I share it here.
Well done for having the assessment and I feel touched that you let me read it. I know it is tempting to beat yourself with a stick, but DON'T. A wonderful, wonderful, WONDERFUL mother is what you are.
A plan can be put in place now and you can support Moglet number 2 on his new journey. He is a bright young man, with a lust for life that is truly infectious. He will achieve all that he is capable of because he has you, Moglet daddy and lots of people (like us) who love him very much. I know it feels raw but knowledge is power.
Love you Meeeee
We were surrounded by support like this. Grandparents, Uncles, Aunts, Godparents, all the same message. I was grateful for every one.
Guilt be gone! Time to make a plan!