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Understanding the Grief Cycle of an Autism Parent

1/9/2018

14 Comments

 
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It has been 14 years since my son Richie was diagnosed with Autism. When he was two years old, I received the news many parents in my same situation may have long suspected but dreaded. When you first hear the words, “Your child has autism,” it is a life-changing moment.  It’s important to understand that the grief cycle that comes with the autism diagnosis is not a process. A process, by definition, is a series of steps that lead to an end. Please note that my son’s diagnosis is NOT all gloom and doom – it certainly isn’t.  I get to experience many moments of joy and happiness that are unmatched to those of parents of children with no disabilities.  I write this in hopes that friends, family members, and other members of our society read this and express sensitivity to all parents of children with autism and essentially all special needs parents – because after all, the feelings experienced are almost universal.  

 Please Don’t Downplay My Pain

My son Richie is this phenomenal young man who is fifteen-years-old and has autism. This isn’t news. Everyone I know is aware of this fact and for the most part is very sensitive about his needs, my feelings, and our family life. However, occasionally, I receive a “roll of the eyes” or “okay – he has autism” retorted by – of all people – women who are very close to me.  This happens during the very few times I’ve had a teary, sad moment or what I call a mini-breakdown.  These family members have made me feel as though my emotional breakdowns are unnecessary or some ploy for attention. They assume that I should be over the "autism diagnosis" and all better. They don't understand that for me, the cycle of grief is ongoing, it doesn't just stop. They don’t understand what I’m experiencing and I hope they never do.  
​The grief cycle of an autism parent or many special needs parents is unique. Please note I’m not suggesting that this is in any way worse than or the same as the loss of a child.  I know how lucky I am to have my son in my life. 

 The Grief Cycle Stages of an Autism Diagnosis and Beyond

While I wrote the following stages in this sequence, there is no systematic order for how these emotions are experienced. Each parent may experience some, most or all of these stages at different times.   

Denial

It’s important to note that this is not the same as holding on to hope that leads to an alternative path. This is the absolute disassociation of an undeniable diagnosis.  I don’t recall ever going through this part of the cycle because I had suspected Richie had autism long before his official diagnosis. I had to argue with everyone from his father to his doctor about getting him diagnosed. However, there are cases where symptoms can be so slight, they are almost unnoticed by most. Autism is well-known for its challenging road and sadly, it is also riddled with many negative stigmas. Because of this, many parents have a hard time accepting this diagnosis. Statistics have shown that fathers of sons are more likely to experience this phase for longer periods of time than mothers. 

Anger and Frustration ​

It’s common to ask oneself, “Why me? Why of all members of my family, friends, and people around me did I get dealt this hand of cards? I’m not a bad person. I know at least five other people who have done horrible and unspeakable things – why not them?”  During this phase, many parents begin to examine their lives, the lives of others and how this could possibly happen to them. They may begin to question their faith. Often times, they assign blame and channel their anger towards their doctors, spouse, other family members, society, the government, and god. 

​Science currently provides no true definitive answer to why autism affects one person and not another. This makes acceptance and finding peace with an unexpected and different life so much harder. I remember going through this phase for a short time. The few weeks following Richie’s diagnosis, I couldn’t talk objectively to anyone about him having autism. I was angry with anything anyone had to say. If someone said they suspected he had autism, my reply was, “Then why didn’t you say something?”  If someone said they didn’t think the diagnosis was correct, I would retort, “Oh so now you’re the expert?” I wasn’t angry with them.  And I’m so grateful they understood that my anger had nothing to do with them!  I sometimes still find myself in this phase, although not often. It's usually during the real tough times when I feel defeated by challenging behavior, let down by the system, or just physically and mentally exhausted. It never lasts long and it is infrequent, but I would be lying if I said I haven't experienced it since Richie's diagnosis. 

​Guilt

Not knowing the cause for autism or other diagnosis’ will inevitably lead parents to blaming themselves – especially if there is another family member (close or distant) with the same or similar diagnosis. Guilt creeps up on me often, more often than I care to admit and I suspect some other moms and dads may experience the same. At first, I felt guilty for my poor dieting during my pregnancy. I ate all those Hot Tamales I was craving, maybe that was it.  Does a gene run through my family? After all, I do have a cousin with Asperger’s Syndrome.  Maybe I didn’t do enough to get him more therapy.  My son was born into a broke family who couldn't and still can't afford forty hours a week of ABA therapy. 

​From time to time, I do ask myself if I’m doing all I can for Richie.  I have wondered over the years how many times my son was punished for exhibiting behaviors he could not help. How many times did he feel excluded, mistreated or unwanted? How many times was he unable to communicate a basic need? For me, this phase is one of the worst ones of all and it still haunts me often. 

Sadness and Depression ​

This is another phase that rears its ugly head more times than we expect.  Upon diagnosis, the road is filled with a fearful new life with unknown possibilities, but we tend to fixate on what might be the impossible. There are so many moments when we feel overwhelmed and it seems the struggle is without end.  Sadness usually strikes us when we are reminded of the things we may not get to experience as parents. Not hearing the sound of my son’s voice or seeing him participate in things as an independent young man are a couple of the things that sadden me from time to time. The loss of sleep, the endless battle for services, feelings of isolation, dealing with new challenging behaviors or old ones that resurface, the lack of support, and a trillion other things trigger our sadness which can also lead to depression. Sometimes, we don’t even realize we’re depressed.

​It’s important for us to be in tune with our bodies (mental, emotional and physical health). My husband can always tell when I’m not quite myself, one of my “tells” is my body’s need for sleep. I try to snap myself out of it with exercise, sharing my pain with my husband and my best friend and writing.  It's important to admit when you need support from people outside your family. Support groups, therapists, and family counseling are all great options that will help with healing. 

Acceptance ​

Understanding that my son is more than his diagnosis taught me that there is a place in the world for him.  I learned to celebrate different things and to celebrate things differently. I learned to set small goals, not just for my son, but for myself as well. I learned it’s okay to be a little selfish and treat myself. In fact, it’s important to do this so I can find balance with my health and my personal life. Yes, I have a life separate from being a special needs parent and it’s not only okay, it’s essential. My faith is also an important part of my life. I pray for God's guidance, continued love, patience because I'm not perfect and make many mistakes. I pray for my son's healing or that God puts the right people before us to help him make progress. 
​
I hope that when you meet a parent of a son or daughter with autism, that you please have patience with them. You will never know what phase of the cycle they’re in.  The puzzling truth is that as parents, we don’t know what phase we’ll be in next either. There are moments when I forget that my son has autism. Then I see him play alongside kids his age and I’m reminded of his differences. Since Richie was four-years-old (and every other year since then) I tried to get him involved in sports, but he wanted nothing to do with it at the time. We go to his brother’s games all the time and I wish we would be going to one of Richie’s games to cheer him on. I think to myself, maybe one day.

​Just recently it dawned on me that my son is almost sixteen-years-old and he won’t be bugging me to drive my car or asking me to buy him a new one! He won’t be trying to sneak some pretty girl into his room or lie to me about where he and his buddies were hanging out. It’s things like these that cross my mind once in a while, but it’s a silent sadness that only other special needs parents can understand. 
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Joy and Happiness

I added this extra part of our lives because although it is not a representation of grief, it must be mentioned that our lives are not just filled with grief. I mentioned earlier that there are moments of joy and happiness that only special needs parents can only understand. The grief cycle we experience is a reality for many of us, but in our lives as special needs parents, we have experiences of unbelievable love, admiration, and success. We relish in the milestones our kids reach. I remember the day I found out Richie learned to ride a two-wheel bike! I never thought it could happen - and it did!

​We celebrate the goals our kids meet. I reward Richie with each IEP goal he meets successfully. What about the surprises we didn't expect? Richie is learning language, slowly but surely. Our family is amazed by each new word and request he makes appropriately. The smiles, the silly faces, and a trillion other things that happen from time to time. These are moments of joy and true happiness. 
The life of an autism parent comes with hardship, love, heartbreak, unique celebrations, challenges, and amazing triumphs. As often as we deal with the challenges we face, we also have the joy and memorable experiences we get to enjoy. We are strong, resourceful and resilient people, but we need the support, friendship, and understanding of our family, friends, and community. If we have this, we can lead healthier and happier lives. 
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Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!
An InLinkz Link-up

Sincerely, Christine SensoryFriends

14 Comments
Bohemian Babushka link
1/9/2018 11:24:33 am

BB has seen her daughter go through many of these stages and suspects she will go through them all her life. Babushka commends all parents and wishes understanding and compassion- especially with themselves. BB2U

Reply
Christine Goulbourne link
1/9/2018 04:46:27 pm

Thank you for commenting, BB. While there are many moments of happiness, the phases of the grief cycle will vary from parent to parent. Love, patience and support goes a long way and I know that you are such a wonderful source of support to her.

Reply
Full Spectrum Mama link
1/9/2018 04:19:00 pm

Oooooh, yes.

The silents sadnesses, the different yet very real joys...

I actually had to write my best friend a LONG letter literally two days ago because I just couldn't take the dismissal/relativization anymore... ("Oh all kids do that" kind of stuff, or "he'll be fine" ...REALLY? IF I JUST ACT LIKE EVERYTHING IS "FINE"??? Um, is that the denial phase of the cycle?).

Wish I'd had this to link to...

Great job!

Thanks and love,
Full Spectrum Mama

Reply
Christine Goulbourne link
1/9/2018 04:52:38 pm

Thank you dear friend. I also had to write a long letter to a close relative who while vacationing in our home asked me if I had considered researching institutions for Richie - he was 4 years old. I remember having to leave my apartment to sit in my car and sob for well over an hour before going back inside with the family. My hope is that posts like these will help friends and family to understand.

Reply
Full Spectrum Mama link
1/10/2018 09:48:07 am

ABSOLUTELY they will!
<3

(Oh yeah, the car crying...yup.)

Kmarie link
1/10/2018 07:12:14 pm

I have autism and so do my children...and while I did not experience the stages exactly like that- I DO STILL have moments for myself that I can run through all of those in a matter of hours...sometimes! So yes, it is normal and thank you for writing:)

Reply
Christine Goulbourne link
1/10/2018 07:36:52 pm

Thank you, Kmarie, for visiting the blog and adding your insightful thoughts and comment. It is truly appreciated.

Reply
Rebecca Bryant
6/30/2019 08:13:01 pm

I did not know there were so many emotions wrapped up in this diagnosis. I know when my brothers were diagnosed with ADHD and ADD it was a lot to handle. There was so much we didn't know and no resources available. I am so excited to see more parents opening up about special need children and their willingness to help other parents.

Reply
Patty Moliterno link
7/1/2019 06:34:52 pm

Christine,
So much of this post resonated with me. Although we have never met, I feel like I already know you so well.

I have cycled through these stages over and over the past 12 years. Although I walk with joy everyday, I am currently processing the feelings of "never being an empty nester." My oldest son is 31, and Jack-Jack (my youngest) is 14. All of my friends and siblings have raised their children, and are lamenting being alone, but this is how life is supposed to be. I will never get that opportunity to pick up travel with just my husband. We will never have an empty house. This is not how life is supposed to go.

Reply
Carol Kneece link
7/1/2019 06:43:38 pm

For someone who does not have a child with Autism it really helps to understand what struggles and emotions you are going through. This is so important to others since they do not walk in your shoes. I think this is very well written and helps me to a better understanding of Autism.

Reply
Elyssa Fernandez link
7/1/2019 11:06:16 pm

Christine, I love this blog post. I didn't know how many emotional ups and downs were part of being an autism parent, but I feel I understand it much better now. I do my best to be supportive and loving to the special needs parents and people I know, and I'm always looking to be more empathetic.

I'm truly sorry that some people are frustrating and ignorant, and I can only hope that they learn better. I'm going to share this post, it's so important for people to gain perspective and create a loving, inclusive environment.

Reply
Elisha Fernandez link
7/3/2019 12:51:58 pm

I had no idea it was so difficult to deal with the initial diagnosis. I can understand that it is an ongoing process of grief. It's the same with all other depressive moments in life. You can't just 'get over it'. Christine, you are so brave for speaking up! I admire your courage in sharing.

Reply
Dave Green
7/24/2022 12:15:58 pm

Thank you so much for this post, I had a lump in my throat through parts of it as I can heavily relate.

I found out that my son is ASD last October and I'm jumping through the different stages of grief in a seemingly random order, which I'm finding quite difficult and tiring at times.

It's always nice to know there are others experiencing the same as you. I've been thinking about blogging about the journey I'm on -- as it may be cathartic for me-- and you've given me a bit of inspiration!

Reply
Christine Goulbourne link
7/24/2022 05:27:36 pm

Hello Dave, Thank you so much for visiting and commenting on this special post. It is dear to me as I reference it often still today. I think you would do a fantastic job at capturing and sharing your experience with others. You will be able to reach other parents, family members and concerned citizens just as I did with you. Your comment, like others who visit and let me know their thoughts about mine - makes my day. Thank you and I wish you and your son God's blessing and guidance on your journey.

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    Author: Christine Goulbourne
    christine@sensoryfriends.com 

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