Thursday, May 5, 2016

Finding Hope When You’re Upside-down and Wrong Side Out

photo credit: stuart miles/

I’ve been doing this special needs parent thing for a while and I’ve noticed something. There are seasons when it seems the needs, demands and challenges of this life hit from all directions at once. Late spring is one of those seasons when I am hit with multiple reminders of the ways our limitations challenge not only everyday living, but also our future.

It begins with IEP renewal in late April or early May. Every three years we get to renew our eligibility AND renew our goals and this was one of those years. Even with my twelve-plus years of experience managing our IEP, this brings a level of stress few people can bear alongside me. Try as I might, it is still difficult to relax and “only trust him” during this process.

This leads us to thinking about the summer and the development of a schedule to help my son keep himself on routine. I’m always tempted to over-schedule because after setting goals for fall, I am terrified of the ground we’ll loose without continual reinforcement. Wondering that I may be working him too hard, then I have guilt which lead us right up to, that’s right, Mother’s Day.

This is just never what I imagined I’d be doing every spring. Despite my proficiency at making this happen year after year, by the time he hands me a card and gift I am usually exhausted with the additional forms my mothering takes. During this season, I always feel upside-down, wrong side out, and grasping at hope.

Good News for the Upside-down Times

If you are new to the special needs parenting club, I hope this doesn’t discourage you.  Being the realistic sort myself, I prefer to face things like this head-on with a strategy. The good news is that I’ve finally learned to see these seasons coming. I know when they generally occur, and I try to be ready for them in a variety of ways. The best news is that God has been faithful and honored my desire to look ahead for his provision. So from one upside-down, wrong side out, hope grasping parent to another, here are a few thoughts:

  •  Look ahead for the patterns or seasons that are more difficult for your family.
  • Be proactive about stress relief during more difficult seasons like holidays, IEP renewal, and back-to-school.
  •  During these times, be very careful not to overbook weekends. Honor your Sabbath!
  • It might help to plan easy suppers that require little planning and cleanup – or better yet, cooperative planning and cleanup.
  • Feel empowered to say “no” to extra events during the more stressful seasons. Knowing how much stress can affect coping skills, you’ll be glad you did.
  • Pick a time of day EVERYDAY when you quit. Allow yourself this time of respite daily.
  • Most of all, ask God to give you strength to number your days.

 Strength to Number Your Days

Before his death, Moses blessed the Tribes of Israel. In this blessing he recounts Israel’s history with the God who brought them out of Egypt and then he begins to bless the individual tribes one by one. The blessing for the tribe of Asher has always been of personal significance for me.

25 Your bars shall be iron and bronze;
and as your days, so shall your strength be. [1]

Most of all, during the upside-down, wrong side out, grasping for hope seasons of our life, I pray for strength to number the days of that season. Oh, I also pray for God to be in the meetings, doctor’s appointments, and bookstores that I troll for summer extension activities. And I also ask for his wisdom and guidance when I am deciding exactly how much to expect of my son during his summer vacation. I also never stop praying that we won’t loose that precious ground and that he will hold us tightly during times of transition.

But I’ve also felt him honor the simple, heartfelt prayer to give me strength equal the days of the demanding phases of our life. It is a simple prayer, but much like trusting for today’s manna – my daily bread – I have found peace in only asking for strength to number my days. Somehow, this strength once internalized turns into hope. Suddenly I am right-side up (mostly), right-side out, and grasping the hand of the one who provides ultimate hope.

Savior and Lord,
Thank you for being the source of my strength and hope. Thank you for allowing me to ask for both the large, seemingly unattainable and also for the small comfort of daily help. I know that you are faithful, even when I am not. Forgive me when I do not trust. Help me to see you when I feel upside down and inside out. Amen.

[1] The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Dt 33:25.

1 comment:

  1. Thanks for sharing these very practical suggestions. I can help myself a lot as a parent if i can set boundaries for myself and stick to them.