August 26, 2015

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

Continues Here

About the author 

Emma Dalmayne

Emma Dalmayne has been diagnosed with Aspergers Syndrome along with Synthanesia. She has six children on varying degrees of the most spectrum so easily. When she is not writing exposes as an autistic advocate, her days are spent doing sensory play, reading, outings, and taking them to therapies e.g. play therapy, music therapy, speech, and language.

  • Editor’s Note: We have published this opinion piece because it offers the stories of two mothers whose autistic children have died recently. We appreciate their willingness to share their very personal experiences. Grief is a broad and complex process. I grieved for my mother before she passed away because she was no longer the person I remembered. Self pity perhaps but the sorrow was real and I still miss her. We encourage your comments below.

  • The messages/ lessons in Fuzani’s and Aaron’s mothers articles strengthened me and made me reflected more on my 5 year old autistic son. Honestly, before I saw autism as as a sickness and always looked for cures. But now as I’ve read earlier on, “We have to always continue to struggle for our children with special needs and autism. We are their best advocates and will do whatever it takes to get them as much support as possible. We have to be the ones to help them succeed. We have to go over the top. Even if it means that we are uncomfortable. We have to sacrifice”
    I’ll try my best ever to make sure he succeeds God willing. He attends special needs school and his speech is just emerging. Though we pay through the nose but it’s worth it. It’s a sacrifice. But I’m concerned for his myoclonic seizures, although reduced, he’s still on Epilim syrup medication. Above all he’s wonderful, has a mind of his own and I pray to God each day to ease his pains when he has sensory issues and screams. He’s a sensation seeker,he touches and sniffs people at times and plays with them but they don’t understand him. They ask questions and say I’ve spoiled him, he should be spanked. I ignore them and cuddle my son even more. All will be well. Reading articles on different experiences gave me more courage.
    The road may be rough now, but with determination and perseverance, we will get there by the grace of God. Amen

  • I have followed one of these moms story of loss for awhile and I even felt grief for her and genuinely felt sad for the shocking loss. I am so glad her story is published as I imagine it could only help the Process of grieving. I pray for continued healing and will always. Now, with the most important said…I have to say that I absolutely disagree with the entire tone and attitude of the top half of this article. Who are you the writer to judge these moms whom you seek out in order to read thier personal feelings? The mom who grieves a child she has that’s different then the one she had expected, sure it sounds like self pity, but it is not. Grief has many facets and outlets, may it be anger, pity, sadness or even regrets it doesn’t matter. We all grieve differently.
    As a mother who GRIEVED a miscarriage, as a mother who grieved when my perfectly typical boy one day wasnt, as a mother to 4 children of all abilities, and a mother whom is now motherless; I was given the right to grieve what I chose. None being less or more worthy of my personal process of grieving.

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