As an autistic mother to wonderful neurodiverse autistic children I keep a keen eye on articles on social media and there are many positive wonderful blogs out there, ones that celebrate and promote acceptance and pride in autistics and autistic life.
Wonderful humorous and often heart rendering accounts of life with a spectrum child, the love and challenges listed with a respect to the child and all involved.
Occasionally though, there will be ones that are a little off.
Ones that run the rim of self pitying parent type, ones, may I dare say it that suggest these parents are not satisfied with their lot.
Ones that even go as far as to suggest that their child is a fault, that their lives would be better if these children had been born without their neurodiversity.
Ones that cry out they are warrior parents battling autism and slaying all in their wake, ones that claim a title of being war torn clambering over meltdowns and self stimulating behaviours to stand proud that THEY survived another day of living with an autistic child.
Worse still are the ones that proclaim they regret they have an autistic child, the type that lament the neurotypical norm of expectation. The one we all had before we adjusted to the fact our children would need more support. They would require help with communication and therapies to aid them through the maze of a school environment , sensory challenges attacking them at every turn.
Terms we had never heard before like SALT, PECS, OT, ASC, IEP and TAC become the norm and we settled into routines of therapies, some challenges yes, but mostly unimaginable pride in our autistic children’s courage and infallible indomitable spirits.
Then I came across the attached blog entitled ‘Grieving For A Child I Haven’t Lost’
It’s written by a mother of an autistic son. She proclaims he is non verbal and because of this she grieves. She grieves that she will never hear him say I love you, she grieves that she will never hear his voice. As you can read in part here:
“The world goes on while I grieve for a child I haven’t lost.
It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost.
But how do you explain you are grieving a child you have not lost?
He is here but to many he isn’t.
I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about.
As I sat on a bench in a public park the tears came easily; tears of heartache and anger, tears of frustration and pain.
But sometimes those tears are needed. Bear with me as I grieve for a child I haven’t lost”.
I read this with a mixture of feelings of disbelief and abhorrence eventually settling on pure anger. This woman ‘grieves’ a son who’s heart beats, who giggles and enjoys toys that in his mothers opinion are ‘baby toys’. Has she considered he likes the cause and effect, the different sounds and textures they produce? Does she not see the regret and disappointment she portrays in her son when she says he’s heartbroken he’s can’t balance on one leg and has no friends?
She proclaims she grieves for not experiencing a parenthood she can ‘only ever dream of’.
But what of two parents who had sons who were autistic, who had sons that were non verbal and read this blog with mounting horror and heartbreak at what this women has written.
These two brave wonderful women wish to share their views on this article and deserve the right to do so. They speak as bereaved mothers who’s sons both passed away this year, who are still raw and hurt in a way this woman knows nothing of. Both of these children were non verbal autistics.
They grieve their children. They grieve the children they have lost.
First is Tamara Wilcox Curtis, mother to Fuzani. 12/03/08-02/27/15