How can we survive grief as a special needs parent?

Since the first of March, grief has been my not-so-quiet companion.

I try to keep most of my crying contained; when I’m in the shower or times when my two sons and husband aren’t home. But the grief and sadness burst out at random and inopportune moments. When will my eyes stop leaking?

According to grief is “the normal process of reacting to a loss.” It goes on to list examples of loss such as death or divorce.It doesn’t mention the grief that arrives on our door step with a new diagnosis for our child or for a new reality in our journey when our children get bigger, stronger and puberty hits.This triple threat of regular growing up is happening to my 13-year-old son who has autism. Many of us who have beautiful, complex children with extra challenges know puberty can pack an extra-huge punch.

I love him so much.

I can be sitting right beside him as he drapes his long, coltish legs over mine enjoying a favorite show. A month ago this break from his running around to be near me caused me pure joy, but now it is saturated in sadness. Are these times together at home running out? What does it mean if we can’t keep both him and me safe at the same time? My husband is a big, strong man as well as a wonderful husband and father but guess what? He needs to keep serving as a police LT so that we can pay the bills. He can’t be with us 24/7. And as a senior in high school my oldest son is a busy guy who, Lord-willing, will be going away to college this fall. We have a wonderful part-time caregiver as well who helps with Luke and has been with us for 4 years. She’s family now. But she has other responsibilities with another job and restarting college, as well she should!

So, what can I/we do when what I call grief triggers happen? When different seasons in the journey threaten to overtake us? For me it’s meant going back to the basics.

  • Giving myself extra time to just sit, process and pray.
  • When the boys are at school I have cleared SOME THINGS OFF my calendar as well as ADDING in some self-care which had dropped off, like going to the chiropractor as well as getting a much needed massage.
  • Leaning on family and friends. Saying “yes” to offers of help even when my  natural desire is to say we are fine and don’t need anything.

Accepting meals and help with laundry (thanks Ma!). Having our wonderful friend, Michelle, come hang out with Luke and me on a Sunday morning and “doing church” that way. Attending my Tuesday morning share and prayer group with other moms who have children/adults with special needs. Letting them in on my sadness when I felt like just staying home. Keeping my monthly prayer time with two other close friends and praying for them as well as having them grieve and pray alongside me.

Many wonderful, unexpected things happened from doing just these three things even though I was emotionally exhausted. My thoughts were turned on their head to the positive when my dear friend, Amy, asked me during our group time, “Can you see ways that God has been preparing you for these next steps?” Um. Well. Yes. Now that you mention it if I can just stop balling for a minute….

Secondly, after sharing how I couldn’t write or journal this month due to all the stress happening, Cindy, who is also in the support group sent me a text. She said she really understood how I felt and shared Isaiah 41:10 as a verse that had comforted her during her daughter’s diagnosis and might comfort me. Not only did it comfort me it helped me start processing and writing when I couldn’t before. I encourage you to pull out your Bibles and look that verse up!

Finally, board maker books about God and Jesus that had been pretty torn up and forgotten were mended and read by Michelle to Luke when she came to us on Sunday morning.

My last little bit of advice for surviving times of grief: Be as kind to yourself as you are to your loved ones when they are struggling.

Oh, and you might need to take a break from watching the show This Is Us. At least I am. I’m sticking with comedies these days! How about you?