August 26, 2015

Fuzani 12/03/08-02/27/15

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…….

From 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.

RIP (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

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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