"Here's your rainbow pack, a leaflet on the
main autism charity in your area. Here's some information on family fund. Oh
and here's your boxing gloves, your body armour, your chainmail vest, your
lance and your cavalry horse for when you do battle. Hope you've got
room in your boot? "Prepare for a fight" everyone
I was born 1978 in Birmingham with one sister. My parents were full time workers, my mom a teacher and my dad a supervisor and it was a very peaceful childhood with lots of holidays and the usual family parties! We had huge extended family so there were always lots of kids around to play with! I was very much into drama and was a member of lots of amateur dramatics, taking on many a lead role. I continued this through my education and went to Aberystwyth University to study Drama.
Cody is a deep thinking little boy with a cheeky sense of humour! He has mischief in his eyes and is a chip of the old daddy block! He was diagnosed with classic autism at 2 1/2 and is non verbal in a functional way, though his communication is getting better and he uses a lot of echolia in an appropriate manner now. He's developed a taste for music and is discovering strumming a guitar!
I laughed to myself when I read your blog Autism and Love:
"Here's your rainbow pack, a leaflet on the main autism charity in your area. Here's some information on family fund. Oh and here's your boxing gloves, your body armour, your chainmail vest, your lance and your cavalry horse for when you do battle. Hope you've got room in your boot?
"Prepare for a fight" everyone said."
Did you prepare yourself for a fight? Having two children with autism must have made your journey twice as hard? How easy or difficult was it to reach the diagnostic stage?
We were extremely lucky in the speed of our kids diagnosis though it was quite sad circumstances that lead to it happening as fast as it did. At the time of Cody's regressions I was starting my recovery from post natal psychosis. I had been very ill, which meant there were a lot of health professionals lingering around our house at various times!
I remember one of them commenting on Cody not reacting when he bumped his head while she was there. That really started the process off and I guess because of my illness things were hurried along. As they were assessing Cody it was very obvious Jesse was displaying traits too, so she literally followed Cody into the assessment process. Sadly my illness meant that any fingers were pointed at me being the cause of the kids "problems" but I've learnt to ignore such remarks now.
The kids are in a local special school which has an excellent reputation. I was eager for them to go to specialised education as I knew from the off they would not cope anywhere else. Before going to this specialised school they were in a wonderful private nursery that really adapted itself for our children who were the first SEN kids they had had. But they went from there to special school last year and now they are in the reception class. I cannot put into words the difference it has made to my children going to a school that truly understands them. The emphasis is getting them to learn through play, so although the staff are teaching Jesse and Cody basics like sitting down for a lesson, it's achieved in a fun way and the kids are never forced into something they don't want to do. We tried hard to find a special school that didn't follow strict therapy guidelines for TEACCH or PECS but rather let the children dictate their learning style. It's helped our kids become more confident and curious, which in turn, has brought on their communication and listening skills.
Errr no!! Not at all really! We have tried but most times it has to be after bedtime as the kids won't go to sleep for anyone else and by that time we're just too tired to get dolled up and go out!!! I'm extremely lucky to have Lee at home looking after the kids too (he gave up work to care for me when I was ill and then couldn't go back home once the kids were diagnosed) so we make the most of our time in the day to put the house back together and get ourselves ready for the kids home-time. So we get a lot of time together. I used to feel I was missing out not having 'date nights' but then I realise that we do get time to be by ourselves, just not how other couples do.. but then when has my family ever been normal!!?
I'll finish with this wonderfully thought provoking piece you wrote, Donna. I'm sure it echoes many a parent's sentiments - and thank you so much for sharing your journey with us....
I write to you as a mother. As a mother of children with a disability, special needs, learning difficulties, physical and medical issues, brain injury, challenging behaviour, sensory processing disorder, epilepsy, downs syndrome, fragile X, cerebral palsy, autism. My child could be any of these but the simple fact is I write to you as a mother asking for help.
My story did not begin when you entered my life, and it will not end there either. My story will continue long after you have walked away. But for that brief moment you are part of my story. Make it a positive experience. Write the chapter where you make change. Be that person we have been waiting for. You may be a supporting role or a starring part but they are equally as important to me. The story is unwritten so add your own elements and change the story for the better. Be the character I will remember long after you have left.
My children are precious to me. They are my world. I will never hurt, damage, break or alter my child and you must not either. Embrace my child. Love my child for those few minutes, hours, days or years that you are with them. Treat them like there is no one else on earth. Show me you have their best interest at heart. Acknowledge them, play with them, show them you care. Take off your tie and play with them. Put down the clipboard and let them on your lap. Ask me how they are doing if they are not with me. Ask for photos and updates. Ask me what they can do instead of what they can't. Leave me on a high. The lows are already too great to bear alone. Be my shoulder to cry on and I will sing your praises through my story.
Do not assume that you have the answers. Do not tell me you don't. Work with me, not against me. Think about what you say before you say it. Don't say it if you don't have to. Do not promise anything except your best effort and in turn I will not criticise your efforts if they come from the heart. One size does not fit all.
Accept that I know my child. Listen. Trust what I say to be true. Do not disrespect those opinions without good reason. Nothing about me, without me.
Know that we are not in the same place you and I. You do not live this life but have the honour of being invited in. Respect that. Do not try to second guess my needs. Ask me. Tell me you recognise the differences between us but will try to understand. Do not underestimate the strength and bond between parent and child. Know that watching a child meltdown, seizure, self harm is not the same as watching YOUR child meltdown, seizure or self harm. You will never understand the lengths we will go to to stop that happening so do not tell us to let it happen. Your expertise does not outweigh my experiences but together they can be a power for good. Question with sensitivity. Leave your ego at the door. Learn from me and share your knowledge. Talk to me like a human but remain professional. This way you will gain my respect.
Leave me happy. My family helped. End it well. Say goodbye. Tie up all loose ends. Give my child closure and leave me satisfied. Know that you made a difference. Look back on your time with us fondly. Be proud to have helped.
Dear professional, you have a chance. An opportunity to do good. To create a union that will strengthen a family. To arm me with the tools to cope. To help me help my child. To ease my emotions. To make my family a happier one.
But you have to want to.
I hope you want to.