When Special Needs Parenting Guilt Tries to Steal Your Joy

by jphilo | Nov 23, 2022 | Different Dream, Encouragement, Special Needs Parenting, Spiritual Support

When Special Needs Parenting Guilt Tries to Steal Your Joy

When special needs parenting guilt tries to steal your joy, how do you react? New guest blogger Lisa Brown is here with a story of what her teenage son has been teaching her about how to answer that question.

I pushed for more until my son finally pushed back.

Over the years, I have often wondered if other parents raising a child with a disability battle guilt like I do. I find that when it comes to setting expectations for my son, it subsequently leads to questioning myself with: just how much is enough . . . or too little? Throw in the stress of balancing everything in life between work, countless doctor appointments, therapies, IEP meetings, prescriptions, surgeries, & hospitalizations (whether planned or completely unexpected).

Expectations can be a slippery slope. Both parents have to compromise when goal-setting for their child. One parent pushes too hard in certain situations while the other seems lenient, and vice versa as they change.

Where’s the balance? Am I a bad parent for expecting too much, or for not expecting enough? My brain tells me one thing: we need to push so that they meet their fullest potential, even when it’s hard. The responsibility is on our shoulders. Yet, in some situations my heart tells me I am asking too much, and I don’t want to push him to a breaking point where he is miserable.

Last year when my son started high school, we knew it would be a challenging year. He had been in all mainstream classes throughout elementary, under special education qualifications for Other Health Impairments: Apert Syndrome, ADHD, and learning disabilities. (You can read more about our family and our journey here.) He had all the accommodations in place, but into the second six weeks he complained of how hard everything was and would say “I can’t do it.”

When I hear those words, my go-to fix-it is to tackle it with relentless encouragement, accompanied with the phrase, “Yes, it’s hard but you have to try.”

His teenage rebuttal was, “You don’t understand. You’re not the one dealing with it.”

For the record, the fact that he was 15 loomed in my head. Was this just an attitude because he is 15? Was it just because this was the first year of high school, and he was dealing with adjustment? Is it really time to change his placement in classes? He had some good knowledge, so what if we made the wrong choice, all because he was being a little oppositional?

By the end of the second six weeks, an unexpected medical event happened, and he had his first clonic-tonic seizure in the car after I had picked him up from school at dismissal. After a three-day stay at the hospital, a previous MRI showed scarring tissue on his brain from one of his numerous surgeries, so he started seizure medication. This was a curveball we didn’t expect.

After everything settled down, we met with the school and decided that his two core classes, Algebra and ELA, were too fast-paced for him to keep up, even with accommodations in place. After my husband and I had long discussions and agreed that he needed more help, he began Resource classes for the two subjects. I am happy to say that things improved.

It’s easy to get wrapped up in trying to look ahead when thinking of your child’s future. Are we doing enough? Getting enough therapies? What if I miss something? What will his/her life look like in 3 days, 3 months, or 3 years?

There’s nothing wrong with looking toward the big picture so you can set goals for your child. But what I found calming and reassuring was to reflect. I took note of the little accomplishments, which were truly monumental, and the hard times that God led us through. I allowed myself to celebrate them without feeling like I was being complacent. Re-evaluating and accepting the fact that goals may have to change can be a reprieve for the whole family. Expectations may change from currently working on, to this year, to . . . not yet, or maybe, not ever—let’s shift our focus to a different goal.

Our children encompass resilience. We can learn from them just as much as they learn from us.

When special needs parenting guilt tries to steal your joy, the struggle can be consuming.

But the battle isn’t ours.

Releasing control at the feet of Jesus and trusting His will can be freeing. Proverbs 3:5-6 (ESV) can help you do so.

Trust in the Lord with all your heart,

and do not lean on your understanding.

In all your ways acknowledge him,

and he will make straight your paths.

Give yourself some grace, Mamma.

Give yourself some grace, Dad.

Give your child some grace, too.

Don’t let self-blame or guilt steal your joy. Instead . . .

Rejoice always, pray without ceasing,

give thanks in all circumstances;

for this is the will of God in Christ Jesus for you.

I Thessalonians 5:16-18 (ESV)

I believe that we are the lucky ones by getting a peek at God’s unconditional love so that we can share it with the world. When special needs parenting guilt tries to steal your joy, celebrate those baby steps. If I completed a marathon, I know I certainly would!

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Photo by Max Bender on Unsplash

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Lisa D. Brown, author of Changing Faces – A Journey of Hope and Perseverance, is a native of Texas, where she lives with her husband, two sons, three dogs, and ten chickens. She taught elementary special education for sixteen years and now works part time in accounting. Lisa began blogging to share progress with family and friends after her oldest son’s multiple surgeries. She extended her writing focus to encourage and inspire other families raising children with disabilities. Besides writing, Lisa serves as a ladies’ ministry leader and disciple maker in her church. She enjoys reading, gardening, crocheting, and watching true crime docuseries.

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The Emotions of an EA/TEF Parenting Life

The emotions of an EA/TEF parenting life run a gambit of emotions. Emily Duckworth, today’s EA/TEF Awareness Month guest blogger describes how she hangs onto hope when despair creeps in.

Here we go again. Yet another no call, no show with a scheduled interview for a home health nurse for Colt. I am angry and I can’t explain it, but I am also hurt. He deserves to have such an amazing nurse. I look at our son and feel such a mixture of guilt, fear, pride, and joy. These are the emotions of an EA/TEF parenting life.

There is guilt daily.

Wondering what else can I be doing as his Mother? As his advocate? Guilt for the time taken away from his sister when he is in sensory overload and just needs more. Guilt for momentarily losing sight of how far we have come and regressing into the longing for what might have been. The guilt of screaming, “Why him? Why us? Why me?”

I feel fear intensely.

I think about the what ifs. When I think of what he felt birth, what he feels now. Coming early, struggling to breathe, struggling to survive. Continuous appointments, poking, prodding. Fear of where this condition may take us. The fear of losing a child. There are moments of fear so pulling, grating, consuming that I can’t help but release it in a silent scream. Pleading, gripping my chest, losing breath, and feeling a grief I never knew existed.

Then comes joy.

It floods into the darkness. The moments my son truly engages with me and I know he understands. He shows me he is happy regardless of his anomalies, struggles, and pain. The complete joy of seeing him with his sister and their mutual adoration. Joy in every smile, every laugh. Joy in all of his firsts, his own excitement, and his daring enthusiasm in doing the things he has been told not to do. We find joy in his past, present, and future. We know we are lucky. We know we are blessed. We are thankful.

We feel pride.

We are proud of everything he has overcome in such a small amount of time. Pride for how hard he works to try and reach milestones. His struggles to breathe, eat, and talk. He takes his struggles in stride, and though we have terrible lows, we have incredible highs.

We will continue to feel so much more than we knew we could.

But when we lose sight due to guilt, fear, and negativity, we revert back to our need for joy, for hope. The emotions of an EA/TEF parenting life are hard. This life is hard. So hard. But we get to witness a miracle daily and we are so proud of who our son is, who our daughter is, and who we have become as a family of our special needs warrior.

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I am Emily Duckworth, wife of Cameron Duckworth and the proud Mama of Ayla, 10 and Colt, 2. Our son Colt was born 8 weeks prematurely. Although I had always felt something was off with my pregnancy, we had never expected the diagnosis of esophageal atresia with a tracheoesophageal fistula (EA/TEF). Colt endured 5 surgeries, including the insertion of a tracheostomy tube to breathe due to the lasting effects of tracheomalacia.