April 13, 2016
I was talking with a newer autism mom the other day, and she was having a hard time. The same Hard Time I’ve had repeatedly over this journey. The same Hard Time we all have sometime during the course of our journey. That moment we all remember – when we got bad news.
For me, there are several. There was the diagnosis – heartbreaking. Then there was the cluster that was the IQ test when he was five. That was a battle, and the results were so horrible that I don’t think I did anything more than give a copy to the waiver people who needed it then hide the paper away in my filing cabinet. My son couldn’t be “severely retarded” (*that was the word the psychologist used in the IQ test report). It was heart shattering to read.
What struck me while talking with this mom is that she needed someone to tell her that it was okay to NOT be okay. That it was okay to be sad. That it was okay to grieve. She needed permission to take that breath. We get so caught up in embodying the Warrior Mom persona that we forget there is something to grieve and we need to grieve. There’s balance that has to happen – warriors must rest, else they won’t be able to be warriors.
For a mom who is hyper-focused on helping her child move forward, these kind of bad news moments can derail you entirely and for long periods of time if you don’t give yourself permission to be Not Okay.
So for all of you – I say the same thing I said to her: I give you permission to grieve what you’ve lost.
I give you permission to be NOT OKAY. I give you permission to have a meltdown and rail at the unfairness of it all.
I give you permission to set down the weapons of the warrior and allow yourself to let go. I give you permission to grieve what might have been.
I recommend that you give yourself a set amount of time to grieve: three days, a week, whatever. Wallow in it. Cry, scream, gnash your teeth. Journal, walk outside, whatever you need to let that steam out. Then when you are done, you put on your Wonder Woman panties and get on with the work of healing your child.
~ JuicyFruit
For more by JuicyFruit, click here.
For more on handling grief that often accompanies an autism diagnosis, see the book Victory Over Autism, by Mary Romaniec.
Do you think it is possible to need to grieve again years after the diagnosis? I’ve been so angry at the autism and frustrated with my son more often than I’d like to be for the last couple of years. He is about to be 13, and I feel like I’m missing so much joy, like I’ve spent so much time trying to survive that I’m missing the gift. I have felt like I need to grieve again for a while, but felt a little foolish.
Oh yes, definitely. A lot of people find that they have fresh waves of grief at different stages of their children’s lives because there is a new realization of what is “lost” or “will never be.” If you find yourself drowning in those waves, though, it would be a good idea to find a way to deal constructively with emotions that may not have been fully processed. Many people have found relief with EFT, Emotion Code, Healing Codes, etc. You deserve to be able to connect with the joy.
That is a good thought. I think I am definitely going to explore that. Thanks.
That was a very moving article….may you continue to find the strength you need to keep going and to keep doing the best for your child. Being a mum is a hard gig, but being a mum to an autistic child is on a different level altogether. To me you sound like a true super hero. I wish you all the best.
I wish someone had told me this ten years ago when I gave up on everything. That hollowness haunted me for almost five years. I finally figured it out. Now, when I feel it threatening to engulf me, I grieve. I allow myself the luxury of being a vulnerable mom who has regrets, and dreams that will never be. And then I do like you said: I put my wonder woman panties back on and throw myself back into the fray. Beautifully written!!
https://vaccinesitsamadworld.wordpress.com/2016/02/28/mother-protect/
The grief process will be revisited as your child’s life progresses, esp around the time of critical important milestones in child/adult development. These milestones may be met later for your child or ones you know your child will never master or experience. This all ranges from not going to regular preschool or K, proms or dances, no wife/husband, therefore no grandchildren, not attending regular religion classes, music lessons, odd use of toys, using RR with opposite sex parent long after should be trusted in RR alone. It can be anything out of what others consider the “social norm”. Yes, we do have modified programs for most of these things, esp now that we have a huge number needing these services or programs. But it still stings to the core that it is not what your child would probably have been doing if he/she had not been injured or harmed by this thing we refer to as autism. Know now that most of the time you will cope, smile and charge on to the next appointment, therapy, play date etc with the hope that it will all add up to improving the quality of your child’s life. But once in a while you will loose it, maybe just internally, but sometimes externally for all to see or sense. They think you are tough to handle it all the time, but a few moments in time will take you to the shower moments where you can let it out, hopefully talk to a kind support person, who will let you vent on how this life is not fair. You will pull it back together to meet the next challenge and your child will be better off for it. You are not alone in this, and no less loving of a parent for grieving your loss of what we consider a “normal” child. We love all their uniqueness and wish them all healthy and happiness
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