Language Translation

Monday, January 9, 2012

Death of a Loved One

There was a question asked by a mother whose family is experiencing death of a close family member.  I started to reply and realized that what I had to say was far more than a simple paragraph or so.  So it became this blog post.  

My dad's mom passed when I was 12.  The only grandad I ever knew died a week before I turned 16. Almost exactly a year later, my Aunt Barb died - 3 days before my 17th birthday.  And then we lost my mother when I was 19.  Each loss was different for me, but there were similarities in how I reacted to each of them.  In looking back and trying to remember why I did the things I did, I find that my biggest reaction was not to my own emotions, but to the emotions of those around me.  I grew up in a very religious home and I know that had some bearing on how I was able to deal with the loss.  Others who do not have that religious fallback can certainly find themselves lost in the emotional angst with no hope. 

The first thing I would recommend is that you deal with your own feelings on the subject.  Chances are his being upset is often a reaction to how you are feeling.  You are holding it in, trying to be "strong" for him so that he can see that everything is okay and life carries on. 

He knows everything will be okay.  He knows life will carry on.  What is causing the turmoil is that you are not being "honest" with him about what is happening to you.  Each of us expresses and is consciously aware of this gift differently, but the one thing I have seen true across the board is that people on the spectrum can feel everything that those around them are feeling*. 

So while your heart is breaking and you feel like sitting down and crying sometimes but you keep going "for his sake", you are aggravating the situation.  He may get upset when you start crying, but it is not because you are crying.  He is trying to grieve with you.  Let your heart be seen.  When you feel like crying, do so.  And explain to him why you are crying.  If you will not hide how you feel, he will become more aware of his own emotions and be able to deal with them and release the pain. 

Don't expect either of you to come out of this quickly.  Such a deep loss is not immediately healed.  It does get easier, and you won't feel that empty ache forever.  But I don't think there has been a single day that has passed in the last 15 years that I haven't thought about my mother and wished for her to be here.  That doesn't mean I mope an bemoan myself everyday.  I do definitely have my "I want my mommy" days though.  What I mean when I say to not expect to come out of it quickly is that you will feel this loss for a very long time.  You do not, however, have to feel the pain of this loss for a very long time. 

You can support each other in this.  If he is getting upset, look at your own heart first.  Are your physical, outward expressions reflective of your heart?  If not, that is almost certainly why he is struggling.  Express and explain are the two most valuable things you can do for yourself and for him.

Books on loss are fine, but if you are struggling with the concept of loss, then the book will do him no good.  Please do not be offended by this - I'm not sure of a tactful way to say it, so I apologize in advance.  If you understood about loss yourself and were not struggling, you wouldn't need a book.  You would know what and how to say - spectrum or not - to him.  So I think the bigger issue is for you to come to understand your own feelings and confusion with loss.  As you do this, his experience with this loss will become easier.

There is a truth, whether your child is on the spectrum or not: Your children learn how to deal with loss and face their own emotions by watching you go through it.  If you keep it in and try to hide how you feel from them, if you only express your pain in secret and after the house is sleeping or gone for the day, then they will learn to hold it in as well.  They will not know how to express it because they don't see you expressing it.  So, while you are getting it out when no one is around, he is not.  He takes his queues from you and how he views your expression.  Your child will learn to hold it in if you do.  He will learn to express if you do.  He will learn to express in a healthy way if you do.  If you explain why you are expressing and how you feel when you are expressing, it will help both of you.  

Now, that doesn't mean that you have an out-right temper tantrum if you are angry.  But it does mean that you express that anger in a healthy, appropriate way.  Let him know you are upset.  Let him know you miss your loved one.  Let him see you feel unsure, confused, angry, sad, and anything else you are feeling.  If he starts to get excited, starts flapping or rocking or does some other physical reaction, just let him.  According to psychiatry stimming is categorized as "stereotypy" or, "A continuous, purposeless movement."  THIS IS NOT TRUTH.  IT IS DEFINITELY WITH A PURPOSE.  The physical stimming is not always a sign of overload.  It is a way to release.  He is grieving with you in that moment.  He is feeling his own emotions in a way that he is able to express it as you are expressing your feelings.

I cannot emphasize enough that he learns how to deal with his emotions by watching how you deal with yours.  If you hide them, then he will also try to bury and hide his feelings.  This will cause a major meltdown eventually because he has to get those emotions out somehow.  If he is capable of crying, then he will learn to cry if you cry.  If he is incapable of crying, then chances are he will do whatever his stimming is while you are crying.  This is good.  This is release.

The physical stimming is for different reasons.  Sometimes it's what I do when the energy and emotions around me are so overwhelming that I cannot find my own emotions in the mix.  Sometimes it is to express my own emotions when I am unable to find the proper mode of expression.  I give them movement and that helps me to release them.  Sometimes I can get caught up in the cycle and try to fix the whole world once I've started.  I find it very easy to take on the feelings of everyone - whether I know them or not.  The more severe or intense the emotions of those around me, the more I will have my physical reaction up to the point of verbal expressions as well as the movement.

Hmmm.  I'm not quite sure this is coming out right.

If your child is verbal, this may look like yelling as well as rocking back and forth or flapping or whatever his physical release is.  If your child is non-verbal, this may look like a lot of excited "Uhhhhhhhhh" coming out of him along with the stimming.  The more intense the emotion, the higher the intensity of his vocal expressions. 

I was sitting in Church yesterday and I was feeling an overwhelming amount of emotions from those sitting nearest me.  I was about to get up and go into another room to listen to the meeting when I heard vocal expressions near me - the child who was across and a row back is on the spectrum, non-verbal.  I was so grateful for his expression.  While I felt too restrained by the expectation of social norms and did not dare make a noise, he did exactly what I wanted to do in that moment.  And, as would be expected, his parents were shushing him gently.  He was quiet rather quickly.  But I found I still had to leave shortly after that.  Not that I had to leave, but that I had to do something.  It was either leave or stay and humiliate myself by making all kinds of noise and movement.

So I left.

Anyhow.  My point in telling all of that is to show that the noise and the stimming isn't all bad or something to worry about.  When I am having my physical, outward expressions, it is rarely because my own emotions, by themselves, are too much.  It is usually caused by the emotions I take on from those around me.  If you will deal with your own emotions in a healthy way, he will be able to face his emotions in his own healthy way.

You will both heal together, and as you do so, you will both learn a new way of connecting.  There is nothing like the sharing of emotions over an experience to connect two people.  You will feel closer to each other as you grieve together and thus lessen the poignance of your loss.

**For more information, please visit my website.  It is the same address as this site, only it is .org instead of .com.  Thanks!   Click Here to go to our website.


  1. Thank you. I am learning a lot by reading your work.

    Love this: While I felt too restrained by the expectation of social norms and did not dare make a noise, he did exactly what I wanted to do in that moment.

    I grew up with a strong sense of what I was *supposed to* do and how I was *supposed to* act. It served me well in many ways. I see my son looking at me often, as if asking, "Is this right? What do you/they want from me?" He seems frustrated rather than relieved when I say he can choose what to do. In these cases, I make the decision for him and he seems relieved.

    At the same time, I want him to feel good about his way of being. He has been carrying around a flicker for years and flicks his fingers near his face, usually when he is very happy. Let's me be happy with him.

  2. Thank you so much for your blog! Our mutual friend Crystal recommended your blog to me several months ago, and I am SO grateful she did. I have learned so much!

    This post was especially timely, since we recently went through the sudden loss of my kids' uncle. The question I have is about my son, who exhibits mild (but definite) autistic tendencies and sensory issues. He deals with grief by denying it altogether. I've always been open about my own grief, believing fully that kids learn how to grieve by watching parents grieve. But I remember distinctly the first time I cried openly in front of my son. He immediately stopped his own crying and refused, from that point on, to acknowledge any feelings of grief at all. I'm certain that he was feeling responsible for my grief, and believed that by denying and burying it, he was saving me from the pain. Eventually, over lots of time, I have been able to gently encourage him to talk and grieve about traumatic things, but it is a tedious process for him, and honestly, most of his grief comes out as anger (full-blown tantrums at age 9 are not fun!). Do you have any suggestions? Energy work helps him a TON with this, so I do a lot of that, too. Just wondering if you can think of anything else to help reassure him that it is OKAY for people to cry when they are grieving, and he doesn't need to feel responsible for that.

  3. I have been in denial, I refuse to allow myself to grieve. After losing my sister in car accident late last year, I can't help but feel it was all my fault. I have been trying to forget that day and have kept myself occupied with work and the gym. It's a real unhealthy lifestyle, I know, so I have started to help myself through this process by using Maybe one day I'll be able to cope with her death.