Reflections on a Decade of Special Needs Parenting

Read below for a guest post from Jennifer Janes.

My daughter will turn ten years old soon. We’re living the Christmas nightmare all over again—the obsessing over the day, the party, the details, what people will bring, what they will wear, if they will behave the way she wants them to, if she will get the gifts she desperately wants. We’re losing sleep over all of this. Twice this week she has been up until after midnight, unable to stop the obsessive thought patterns arising from the anxiety and anticipation leading up to her birthday.

I’m exhausted. I’m frustrated. I have gotten impatient with her. We have been doing this for a decade now. I want her to calm down so she can sleep.

I ask her if she’s practiced her deep breathing. She has.

I ask her if she has prayed. She has.

I ask her if she has tried to relax tense muscles. She has.

The truth is, she has tried a lot of things, but I haven’t tried at all. I’m expecting her to be able to solve this alone so I can sleep, when I need to support and encourage her in her efforts, training her in new ways of coping with her struggles or helping her use techniques she already knows in ways that will make them more effective.

After she finally calms down and goes to sleep, I lie in bed praying about my own struggles with parenting this precious girl so she can her reach her potential. As I ask forgiveness for being irritated and not initially helping and supporting her like I should have, God reminds me how far we’ve both come in the past decade. 

Her meltdowns are less frequent and explosive. She has made progress to be proud of in academic subjects. She deals with strong emotions more productively. She has learned the joy of having friends by developing good relationships with three girls a few years younger than she is. She has a teachable spirit when discussing nuances in social interactions that she’s missed, and she works hard to remember and incorporate that knowledge into future interactions with people. She sacrifices her own feelings and comfort to let the people she cares about know they’re loved (by allowing us the occasional hug and kiss when she doesn’t really want to be touched).

And me? I trust my God-given instincts more when it comes to what’s going on with my child. I am at peace more often because I have learned to trust God’s provision by seeing Him come through for us in seemingly impossible situations over and over again. I am more compassionate and kind, realizing that others are going through difficulties I may never know about. While I still don’t like confrontation, I have realized that I do have the strength to advocate for my child with professionals who insist they know more about my child than I do. I know that I really can do all things through Christ who gives me strength, including surviving sleep deprivation, days without the chance to sit down for a proper meal, going to specialist appointments and therapy sessions on a weekly basis, administering immunoglobulin infusions, keeping up with a daily medication regimen, and more. I am less judgmental, realizing that most of us are doing the best we can, with God’s help, and that we all need a big dose of grace daily.

We both have a long way to go, and we have weeks to work through some of those rough spots as we wait for my sweet one’s birthday celebration. But remembering God’s faithfulness in the past and seeing how far He has brought us gives me hope for the future and a peace in knowing He’s with us every step of the way.

Jennifer Janes lives in Arkansas with her husband Jeremy and their two daughters. Her younger daughter has special needs, although it took several years before the extent of those needs became evident. Jennifer has moved from denial to thriving in an alphabet soup of diagnoses. She spends her days in the Word, reading, writing in blue ink, homeschooling, and going back and forth between therapy sessions and specialist appointments. She writes about faith, family, and parenting and homeschooling a child with special needs on her blog.