Remembering the Amazing

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Remembering The Amazing.

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 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?

I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to push him on the swings at the park. He goes to school. He will watch a video sometimes. And yet he is lost.

I have yet to hear his voice. I grieve for the conversations we will never have. I grieve the fact I will never hear him sing or shout or chat with friends like those little ones in the park. I grieve for the fact I will never hear him tell me a joke or talk to me about his day at school. I grieve for the loss of never hearing him whisper ‘I love you’. I can only dream about what his little voice may sound like, how it might have grown in depth and tone as he aged, what sort of accent he may have had or how he would pronounce names of people he knew. A part of him will never be. And I feel the loss and pain of that.

There is sadness that I can not walk him to school or that he can not go to school with his twin sister. There is pain relying on others to tell me about his day when I should hear it from him. There is heartbreak watching the neighbours child of the same age jump on a trampoline and my son can not balance on one leg let alone jump. There is a lump in my throat when people ask what my child wants for Christmas and he still plays with baby toys at almost seven. We have never experienced the tooth fairy with him, he has no concept of Santa Claws and neither chooses his own clothes nor has the ability to dress himself. He has never said ‘mummy can I have’ or gone in a strop because he can not go out to play. He has no friends his own age and doesn’t get invited to parties.

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.

It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.

So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.

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..

“For one she doesn’t know what her child will be able to achieve.

Not pushing and taking things away that helps with is development says that he will not be capable as an adult.

I mean he’s only 7.

He has a long life ahead.

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 of it means that we are uncomfortable. We have to sacrifice.

Honestly I miss autism. I miss the therapy appointments. I miss the IEP meetings. Doctors appointments. Appointments with the developmental paediatrics, teachers etc.

I miss the visions I had for my child. The plans I had to make sure he would succeed as a teen and adult to the best of his capabilities.

A child is precious.

A special needs child is even more precious and unique.

My 6 year old son unexpectedly passed away on feb 27,2015.

It was and is still a shock.

I just knew he would be fine. Going to college, working a job, getting a trade, driving a car, catching a bus. Whatever he was going to be capable of…..

Well he is gone now. I’m crushed. My dreams and ambitions for him will not come true.

He is the only one of my children with autism or a special need.

He has a twin sister and a older brother who just turned 9.

Yes. Dealing with him was rough. He had the mindset of a 2 year old. We were still working on potty training. He was non verbal. However before he passed he his favourite words were awesome and actually. He could count to 20.

It was very difficult dealing with him.

But I love him and always will.

Now that he’s gone. It’s only been a little over 5 months. My heart is broken.

There is no more rushing. No more makings special meals for him.

No more school or therapy appointments no more hugs and kisses out the blue.

No more of his personality. No more him.

He was closer to me than any of my other children. However I love them all the same.

He demanded and needed a lot more attention from me.

Now he is gone.

A huge hole in my heart will always be here.

We can’t grieve a child that isn’t gone.

It’s impossible.

My son with autism is gone and nothing can replace that.

I would rather he be here with me now and I continue to struggle.

I know it’s hard.

But the loss of a child can by no means compare to living and dealing with autism and his development.

If I could I would trade for him to be back with me…….

IMG_6035From a grieving mother of my child with autism who recently passed.

You couldn’t even begin to understand what grief is.

Do right by  your children. We are their advocates.

PIP (play in peace) Fuzani

12/03/08-02/27/15

Then next we have Alison Greene mother to Aaron.

“Aaron Green 14-1-11 to 1-4-15

My son had two conditions. Uncontrolled epilepsy and autism. One of these made him very ill and killed him.

Epilepsy meant that he spent a lot of time in hospital having tests and seeing various specialists.  He would have at least one day, if not two, every week having clusters of seizures and needing 100% attention from me. He had to take loads of different medications and we were often having to call 999 for an ambulance.

 On the 1st April 2015 he had a huge seizure lasting 90 minutes from which he recovered only minutes later to have a heart attack and die. We always knew that there was a possibility he could die. But we lived on the edge all the time we forgot how real and near death was. I am now grieving for his loss.

He has left the most unimaginable hole in my soul. When he was buried part of me was ripped from me and went with him into the ground. But through it all I would not have missed a second of having him.

He was the most amazing child.

Yes, being on the autism spectrum made him different. He had sensory processing disorder in every area.

He had developmental delay.

He couldn’t speak. But he taught me so much and it was a privilege to be his mother. He was like a ray of pure sunshine. Watching him achieve small goals was magical. He was intelligent and like any toddler very determined and cheeky. He may not have used spoken language but his communication was rich and varied.  He had a way of seeing the world in so much detail.

He loved living.

 Whenever he was free from the epilepsy he just loved living. He made the most of every second.

Aaron’s autism meant that I needed a much deeper stronger connection with him. Far from going about my life feeling like the autism had taken something away from Aaron,  I felt it was a beautiful part of him that made him shine. I used to look at him and be so proud.

Please don’t compare grieving for the death of a child with learning how to help your child with autism.

 My life has been torn apart with Aaron’s death. But for him and my beautiful 9 year old daughter I not only continue but want to tell everyone how amazing he was.  That autism is not an illness its an opportunity.  An opportunity for us as parents, friends and family members to learn, be supportive, and enjoy the wonderful gifts that someone with autism can bring into our lives”.

I have the upmost respect for both of these women and thank them for participating in this article, for giving their views and letting us share in their beautiful memories of their sons.

IMG_6034The woman who wrote the abhorrent blog who’s comments include the suggestion of a the bereavement counselling service visiting a group of parents who’s children have special needs does not know the grief of losing a child.

She does not know how it feels to never hold that child again to never gaze upon them as they sleep.

I hope this is read, I hope these beautiful mischievous little faces go viral as we celebrate Fuzani and Aaron, two children we grieve and have lost.

Dedicated to Fuzani and Aaron, two angels who are and always will be missed.

 

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Comments

  1. Louise Page  August 21, 2015

    Dear Emma.

    This is a beautifully written tribute to two precious little souls, Fuzani and Aaron. The special message carries, very powerfully, a reminder for all parents/carers of children with differing abilities, to always cherish, even through some difficult times, the most important part of our lives – our children as children first. The challenges that our children can sometimes face as they experience life can be a surmountable concern. We, as parents, can work through our worries with and for them. But when we hear of one of these young and innocent lives is lost forever, nothing can replace their presence, their love, their laughter, their need for us and our joy in their sharing their spirit with us – all being a privilege. My heart and prayers go to these beautiful little souls’ parents.
    Kindest regards, Louise Page.

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  2. Sarah K  August 21, 2015

    I don’t think the first blog.is abhorrent and I think.it’s unfair to.place these different situations side by side as you have. I think the first blog is clear that there is a grieving process for the child you thought you’d have and that.it’s confusing.and isolating because no one has in fact died. She’s not saying it’s the same thing as losing a child or that she doesn’t love and enjoy the child she does have. And support and advocate etc Just that she also needs dome time forsythia grieving process. What’s abhorrent about that?
    I think these bereavement-type feelings that parents of sn children can have are common and well-documented. And it’s also often raised that this process is confusing and makes parents feel guilty because they know it’s not a bereavement.

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  3. Emma Dalmayne  August 22, 2015

    The point I make and indeed the two mothers featured make is that this mother has her son.
    She’s not grieving, she is disappointed he cannot verbalise speech and clearly stated SHE is missing out on parenthood experiences like birthday parties. Why has this child never experiences Father Chrisrmas and the tooth fairy? Because he’s non verbal? Makes no sense. She has her son and needs to see its not about HER. Birthday parties for the most part are a sensory overload nightmare for autistic children. Why would he want to see another child re dive presents, experience loud sounds like screaming and an overload of bright colours? For her that’s an ideal for him it could be painful.
    She needs to understand what grief is.
    Grief is knowing your child will never breathe again, never run in the park and giggle like her son. Never grow up never have a family of their own, never enjoy candy floss tickles and giggles, daydreams and stories. That’s gone. It’s done.
    She still has that.
    These types of blogs released where parents go on pity party sprees about themselves lead to talk of cure.
    Last year a mother threw her son from a bridge killing him, she was also a pity party blogger, disappointed in what she considered her child’s limitations.
    It devastates me and I hope to god her son never reads it, his own mother grieving him as if he had died.
    The two mothers were hurt and then furious to read it and rightly so.

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  4. beesee  August 22, 2015

    I think you make very good points about the “pity” blogs. My son is autistic, is non-verbal, with intellectual disabilities and has epilepsy. He is an adult now. I grieve deeply for these moms who’ve lost their babies. And I fear that for my son. The other blogger has her child, although her child is different. Those things said though, I never condemn others for their feelings. I’ve moved beyond anger and outrage at others.. The point should be to try to help parents reach the point of acceptance. We don’t achieve that through shaming them for their feelings, even if not justified. We help them reach that by helping them to see autism differently. There are often many steps in that process.

    Now, that said, I don’t see autism exactly as many self-advocates do. I am not autistic myself, so have a different vantage point. My son isn’t able to self-advocate, and his experience is different. There are many experiences he will never have that many others with autism will. He isn’t able to explain how he feels about that as he cannot type or speak. He won’t drive or live independently. I don’t pity him. He loves life and is a happy, affectionate person. I will help him to live as independently and to have as much choice in his life as he can. He can have a happy fulfilling life as he is. But I don’t view it as a gift either. I view it as his life is and we have make the best of it. I’ve been criticized for that viewpoint, I must see it as others do, or I am in the wrong. I must view his neurology as a gift. I have been scolded for seeing as it is for him, a difference. A very significant difference. One that, yes, I’d change if it were possible, if only so he could speak, type or communicate with ease. So far it isn’t possible. I accept that regardless. I hope that when he is able to communicate better, he doesn’t have his viewpoints invalidated by a community that regards acceptance as 100% agreement and towing the popular line.

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