WARRIOR MUM - DONNA STREET'S JOURNEY

Mum to two young children with autism and SEN.

Too often a special needs child is defined by what they cannot do. Meetings with specialists in our search for a diagnosis can be fraught and depressing, where we often feel judged and misunderstood. Even home visits and assessments can be a nightmare and nobody gets a clear picture of who Mum really is or of the bond that she has with her children.

Cody and Jesse are Autistic and all I can say is 'Welcome to the house of fun' where these two gorgeous children live with their Mum and Dad..

"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." 

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.

What was your first job after leaving school? 

 Once I left university I went on the become an assistant entertainments manager at a holiday site both in England and abroad. I worked as an activity organiser at MIND for awhile, it was there I did my 110km charity trek through Guatemala! I travelled the Far East and lived in India as a drama teacher but eventually I returned to work in theatre in education, touring the country for about two years. When I met my husband I decided to settle down and became a drama teacher and children's entertainer in nurseries as Naughty Nancy the Pirate!

How did you meet your husband?

My husband and I met through a blind date and I have to admit it was love at first sight! I knew I'd met my soul mate and we talked about raising a family all the time. We travelled the world for a bit but within three years we were married, with an Elvis impersonator performing at our wedding. I fell pregnant a few months later, but sadly we lost that baby very early on and the whole experience was very upsetting. I was told I wouldn't keep any pregnancies due to a medical problem but fell pregnant in the following year. Cody was born in 2008 and Jesse followed 10 months later in 2009!

 

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 like to say Jesse is brand new! She is curious about the world and has a lust for life that is infectious! She always has the biggest smile on her face and her sensory seeking gets her into every nook and cranny she can reach and even some she can't! She has classic autism with significant learning difficulties but don't tell her that as her rational and logical thinking is astounding...there is nothing she can't work out how to reach! Nothing! Jesse is non verbal but very very vocal! And has just discovered the joys of fairy wings!

My children are exceptionally happy and very determined little people...they are truly a joy to be around even on the hardest of days!

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.

                                        

How do they get on at school? 
 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.

From the photos it's pretty clear you get down and dirty with the kids. Your background in Art, Drama and Mental Health, together with your sense of fun makes it all look so easy. Is it?

Oh no not at all!!! There are days we'll go to enormous effort only to be dismissed with a grunt or worse a full blown meltdown and there are equally times when we really can't be bothered but the kids want to climb all over us. My attitude of "stuff the mess" does help as it means I'm more open to trying things the kids seem to enjoy such as tipping, squirting and throwing things on my floor! 

Its a difficult choice between do I stop them or do I grab this rare opportunity to interact? Most times I'll go with it because true 'interactive play' doesn't come along that often and that used to deeply upset me. I guess that's why I over compensate sometimes by letting them get carried away because I never thought it would happen!

So most of the things that have lead to the best times have happened by fluke...we just keep trying! For every 1 that works there's 9 tries before that that didn't! 

 

Do you manage to have a night out together? I think the modern expression is 'date night'  
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....

"Dear Professional,
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.

It may have taken me a great deal of bravery to come to you. To let you into my life, my child's life, my family life. I may be scared you will pass judgement on me. Maybe you will lay the blame at my feet. But I've climbed mountains, fought personal demons to do what is right for my family and ask you to help me. Do not judge me..commend me. Do not scowl at me..smile at me. Make me feel like you will go the same distance for me as I have travelled to get here.

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.

I am emotional. I am tired, sad, angry, stressed, distressed, grieving, confused, optimistic, pessimistic, happy, content, dissatisfied. Sometimes all at once. Accept these emotions. Empathise. Acknowledge my feelings in every meeting. Work with my emotions. Help me deal with them. Recognise that despite all of this I'm trying my best. Tell me you know this. Give me your time even though you have none. Go that extra mile. Support me appropriately. Signpost me accordingly. And I will thank you for it dearly.

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.

A mother."

                    


Contact Donna

Facebook - Autism and Love

Twitter 

@copyright No part of this blog can be printed without the author's permission