Carrie, centre, at our recent “Back to School” Handbooks launch
Carrie, a regular contributor to AsIAm, shares her struggles, experiences and views on the need for acceptance and understanding of Autism in society.
Autism has been apart of our lives for 10 years now. Its brought its challenges along with it. When we started out on this journey we had Mia’s diagnosis to teach us all about Aspergers Syndrome along with her other conditions ADHD, Oppositional Defiance Disorder and Dyspraxia. We dedicated every minute we had to teaching ourselves about the conditions and how to help Mia live with them. I think really from the day you realise your child is ‘different’ you find yourself feeling lonely and isolated even if you do have a supportive family and friends. Its you and your children that live with this condition so only you know how hard and heartbreaking it can be to suddenly learn a new way of living your life.
However there is so many positives to having autism in the family. 10 years on we have Mia who has come so far in so many different ways, she is comfortable with people finally visiting the house to the stage she now spends time with them without getting to sensory overloaded. For years we used to dread people calling even family as she would get so hyper and wouldnt speak to them. To Mia home is her safety net, its her own place where she can stim as much as she wants, be who she is with out anyone not understanding and know that she can just be. For a person with autism the world is a strange and chaotic place so our goal was always that once Mia was at home she could have peace and no judgement. She has her own chill out spot we have bought various OT props to help the bad days and she has her assistance dog Lexi, she has her diary she writes how she is feeling and we are open to always talking about her having aspergers. Its not brushed under the carpet or never spoke about.
From day one our motto was to be open to the condition and be accepting. Sometimes fear can get in the way of that. I still have fear all the time. It lingers in the background quite a bit. Now Mia is 10 we have a lot of new challenges to deal with. She is struggling with friendships, she has an unhealthy obsession with boys, and she has major anger over the fact that she feels different to the other kids. I find myself endlessly looking for ways to help her. I want her to understand how amazing she is, how caring and loving she is and how funny she is. She is riddled with self doubt and anxiety. She sticks out at school as I see her try build friendships. Sometimes she is overly friendly and too “touchy feely” and other times she is to snappy and grumpy and I know in my heart she is so overwhelmed with that side of things. Some kids can be cruel. Others can be so kind that it restores your faith in humanity.
10 years on we now have 3 children with special needs. Ava who is 7 and has ADHD and a chronic anxiety disorder and Jack who is 3.5 who has Autism. I don’t know many people my age in our situation. We are only 29 and had our kids young. I do feel so lonely at times. I feel out of my depth. I find myself repeatedly having to explain to people about the kids conditions and to be met with ‘ah sure all kids have some sort of anxiety’ or ‘in time they will grow out of it’. I find myself utterly exhausted and angry that some people just cant deal with Special Needs. I find myself constantly arguing with my own mind on it. On the one hand I do believe that there is genuine people who really don’t know much about autism as they have never encountered it. That side I can understand. I cant understand people who know when children have a condition yet they repeatedly play it down to you or completely ignore it all together. Maybe I think that way because we are so open and honest about it and I accept not everyone is that way but I wouldn’t try tell people with other conditions that they ‘will grow out of it’ or that ‘everyone has something’ .
I find ignorance the hardest thing to deal with about living with this condition. I think one thing is crucial when autism is in your family – understanding and acceptance. That is all we want as parents, for people just to do that would probably ease a lot of the loneliness you can feel. I always try to be positive about my children’s conditions. I have spent everyday fighting for them the last 10 years, teaching them that they are perfect as they are, trying to get people to understand them . I want them to live a life where they are accepted and comfortable in their own skin. 10 years of fighting and raising them though has been tough, more tough than I could ever have imagined. I only realised last week that I never really allow people to see the bad days. I have got so used to planting a smile on all the time and pretending I can do it all. I think all mothers do that even if your children don’t have special needs, you never want to show people you can’t handle it all. There are some days that are so overwhelmingly tough that I really feel like I’m loosing my mind. Then I have the mother guilt over even feeling that way!. Thank God, Daniel knows me so well and knows when I need a good cry or a break to get myself back together.
Another thing I have realised is that i’m stressed all the time. I never switch my brain off, ever. Other Special Needs parents will understand that. You really are doing it all. As there is little services available you are daily a carer. Occupational therapist, mother, cheerleader, teacher, referee, a counsellor. I find myself going to appointments with the kids and its me telling the professionals all about the condition as if i’m the expert! The hardest thing at the moment is helping each one of the children with their issues. Trying to split myself in 3 ways. Acceptance and understanding is key here. Self education about Autism is the best resource!
Mia has been our teacher the last 10 years and without all her wisdom We wouldn’t be where we are today. Mia is the most honest and accepting child I know. She has the job as playground minder in school to the smaller kids with special needs and she loves it. She treats them the way she wants people to treat her, she takes time to understand their needs and just goes with it. We are so proud of her she wants to be a Special Needs Assistant or Teacher when she grows up. She has taught us to see the world her way and to us its the best way.
