August 26, 2015

Aaron 14-1-11 to 1-4-15
Aaron 14-1-11 to 1-4-15

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 utmost 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.

The woman who wrote the 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.


Editor’s Note: Opinions expressed by Autism Daily Newscast Contributors are their own. We encourage our readers to read the original blog post and comments discussed in this piece. 


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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