"As a parent of a child with ASD what is the hardest thing about ASD for you?" and
"As a parent of a child with ASD what is the best thing about ASD for you?"
Again, I asked for some help from friends who have Autistic kids. Do you know what I love about these parents? I received twice as many responses to the question about the best thing about ASD as I did for the question about the hardest thing!
So- what did they say was the hardest thing about ASD for them as parents?
The parents who responded talked about the intensity of living with ASD. There is always a new challenge to meet, and another issue to deal with whether it be dealing with the stigma of having a child with a disability, or the "limbo of waiting for a diagnosis" as one mother put it. They talked about the behaviours that come from the children being affected by sensory issues, and the resulting meltdowns. They talked about their children not being able to understand why their parents object to some of their inappropriate behaviours. They talked about the pain a parent feels as their child grows into an adult with an "invisible disability" and how their child has more and more expected of them as they grow older, but they are not always able to meet those expectations. They talked about the effort of constantly explaining to people why their children behave the way they do. They talked about how other peoples stares and insensitivity are so difficult to deal with. One mother says about her son, he "is one of the most loving children I've ever met and hes always smiling and its hurtful for other parents to move there child from a swing or play ground because the sounds he may be making while he swings are troublesome to them. Some parents act as if there children can catch it through a cough...".
And the BEST things? Well- I'm going to quote them....
She "take(s) everything so literally! Its funny to see how she looks at things and perceives them! Also her memory is excellent!" Her sister "is non verbal but that little girl is taking EVERYTHING in! :)"
"The 'child-like' innocence and simplicity in how he views everything. Also, his selfless concern for others 'less fortunate' than himself, whether it is someone falling over and hurting themselves, or somebody less able than himself."
"The best thing ASD has brought to my life is a true sense of family...by family I mean the beautiful people who has been there for me and my son. Teachers, counselors, psychologists, etc...have been a godsend. There is one group of awesome people that have had a profound effect on me as well as my son and that is my "sisters and brothers" of my autism parents' support group ........ I came upon this group of people at a time where I felt so lost and alone and useless to my son, without them I do not know where (we) would be. Their unconditional love and support helped me through very rough waters. They have and will always be my heroes, their wisdom and strength leaves me in constant awe. With them I always have an ear to bend, a shoulder to cry on, and plenty of hands to hold. They are my rock and they never cease to amaze me. I love them so very much."
"The best part is the love.... yes there are melt downs and behaviours and challenges but 5 minutes later he turns and says I love you mum...Other teenagers hold grudges and and become judgemental and make their life complicated.... The ASD child just loves...its simple and honest and even if they cant always show it you know its always there"
"They will never be superficial or shallow natured."
"His gentleness with those who are weaker or smaller than him. (He's amazing with his little brother & the kittens.)"
"The best thing other than my sons themselves, (they are THE best thing that ever happened to me) has got to be my own paradigm shift in all thinking. Autism has helped me to see so much more of this world, in humanity, other living things, and also just the beauty of the details. There was so much I was missing before, but my eyes and heart have been opened by Autism."
"It has been my greatest life experience. I have learned so much patience, understanding, simplicity, appreciation for small things, and that I am much stronger than I ever thought possible.
I have a son that amazes every day with something new he has learned."
Thank you so much to (in random order) Carrie, Heather, Crystal, Joe, Shelley, Michelle, Kay, Rebekah, Chris & Kelli. Your input was invaluable to me this week, and I am honoured that you shared yourselves with me so I could talk to others from your perspectives. I love that you all have such a positive attitude to the challenges that you face each day.
For me the hardest thing (at the moment) about ASD is managing all that my Autistic kids need at the same time as being the parent my other 3 kids need. I struggle daily with knowing who needs what, when, and how to decide who needs me the most in each moment.
The best thing about ASD for me is the opportunity it offers me and my kids to grow and learn about acceptance and graciousness towards those who are different than us.
If you missed adding your comment earlier, you can still comment here, and I'd love to hear your responses!
The next question we'll be looking at will be "If you could change one thing about the world your ASD child lives in, what would it be?", and I'm taking responses to this question ow on my Facebook page- come over and join the discussion!