asd · aspergers · autism · PRTF · RTC · special needs · support system · understanding

Loneliness Revisited

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In October, I wrote this post about the loneliness of parenting a child with special needs. This post was not terribly unlike any other post, but it described the loneliness that many of us feel and how it can affect us in ways we might never have imagined. 
This post came to mind during a discussion with another Loving Mama who is experiencing something very similar to our situation. This Mama writes here, Normal is a Dryer Setting. She has so many heartfelt posts that I can’t find just one to link. I can’t find 2 or 3 to link, honestly, because she is so honest in her posts. She puts her heart out for all of us to see. It is beautiful and heartbreaking all at the same time. It is LOVE. Love for her son. Pure, unconditional, heartbreaking love.
She and I discussed the loneliness of this journey we are both on. There are so few people who are on this journey, yet it is not a journey that I would ever wish for anyone else to be on. If anyone has to be on such a journey, I certainly would not want them to be on it alone. The loneliness on this journey is scary, depressing, but sometimes a way to cope. 
You see, as the Loving Mama (Amy) said, our “alone is sometimes self-imposed”. Why? When we close ourselves off from the rest of the world, in some ways we are able to ignore the reality. If there is no one to talk to about it, if we are not answering questions about it, if we are not listening to unsolicited advice, we are not having to face the reality of how we feel. 
How do we feel? We feel that we love our children beyond anything imaginable. We also feel like we have caused it, failed them, failed our other children, failed our marriages, failed in every way for our families. (We, in this case is a collective we as parents on this journey, not necessarily what Amy also feels.) 
At the same time, we know that we need to have support. Who has been on this journey and can truly understand what we are going through, though? Like I said, there are so few people who have been on this journey. So, are the therapists who are fresh out of college and do not even have children supposed to comfort us? Are they supposed to be telling us, “I understand.” or “It’ll be ok.”? What about the psychiatrists who have worked with kids like ours for years, but have the perfect little family with 2.3 kids, make it to church on time every Sunday, have never had a behavior problem from their children who all have perfect grades and successfully participate in after school activities? What about the well meaning family member or friend who says, “It’ll all be ok.” when deep down, we know it might be many many years down the road, but it’s not ok now. Do any of these people understand what we are going through? 
While we are lonely, while we are hurting and begging for relief, while we are trying desperately to make sense of how we ended up on this journey instead of being able to make church on Sundays and the soccer games on Saturday, we also understand that there are people who care. 
I am grateful, today, for those people who mean well. I know that, for the most part, no one means to be callous or inconsiderate. I know that people are not setting out to make our lives more miserable. I think a lot of times, our reactions give us the “self imposed” agony and loneliness. 
So, while we are hurting, while we are dealing with our self imposed loneliness to avoid having to hear the well meaning comments, answering the questions, and dealing with life one minute at a time, what we need is this…
We need to hear that you have a listening ear and a strong shoulder – both without judgement.
We need to know that you will not offer unsolicited advice about how to raise our children. 
We need to know that you are available when we are ready, even if it is tomorrow, next week, or in a month.
We need to know that even though you probably don’t understand what we are going through, you still care about us. 
We need to know that we don’t have to be lonely, but that we are welcome to our self imposed loneliness whenever it is necessary for us.
I also want to say this. Over the last couple of weeks, I have been blessed enough to meet two Mamas who are in the pre-placement stage of the journey I am on. The pain and agony they are experiencing is breaking my heart. I know their pain, I know their agony. My heart breaks for them, but I am also blessed to be able to be here for them (in whatever way they want me to be) as they walk this road. Being available for them is a source of comfort and healing for me. Thank you to both these strong, courageous, and amazing women for being here for me as well. I love you both. 

2 thoughts on “Loneliness Revisited

  1. Thank you for so much for this insightful post, and thank you for mentioning me. I too am talking via e-mail to some moms who are just beginning the journey, struggling through diagnosis and getting help. If we are not here to help one another, what are we here for?

    Love & many blessings to you…

  2. A truly honest and truthful post, thanks. Its great to find other moms for me thru blogging and the online support group that I can read about and talk to, this is my sounding board, then I can go on with life with all the other people that fill it, that don't really get this journey.

    And, my husband thinks social networking is a waste of time, not in my eyes.

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