The Challenges and Blessings of Parenting Special Needs Children with a Chronic Condition

This is day 19 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Emilee Roberts is guest-posting about what her family’s life is like, dealing both with special needs children and chronic conditions of their own.

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We’re a special needs family. Our oldest son is on the Autism Spectrum, our daughter has Sensory Processing Disorder (SPD) and a pending diagnosis of ADHD, and our youngest son has SPD. I have SPD as well, so although it helps me better empathize when they are under- or over-stimulated, it can also result in my feeling overwhelmed. My husband and I also have physical disabilities. I have Fibromyalgia and Chronic Fatigue Syndrome as well as a possible auto-immune disorder. My husband has Chemotherapy Induced Peripheral Neuropathy among a slew of other issues caused by the chemotherapy from his cancer treatment a few years ago. Because he’s a Disabled Veteran, he even gets a number on his disability – he’s considered 90% disabled.

Phew! Did you catch all that? It’s the long way of saying our family has a lot of challenges, but we have a lot of blessings as well!

The Challenges

There are many challenges to parenting special needs children. I think even healthy parents can find some days are just downright hard. Having a chronic condition and a disabled spouse as well definitely adds to the challenges. How do I contain one child’s meltdown? Sometimes it spreads like a wildfire to the other two children and myself as well! Then we all just need to separate and recover. How can I help my children when I’m struggling myself? How can I be a “good mom”?

Sometimes to play with my kids mean I have to just sit down and play from the floor.

Some days I just don’t feel like doing anything. I’m in pain all over, I have a migraine, I’m so exhausted I don’t even want to get out of bed. I have to, though. There are homeschool lessons to teach, in-home therapy for the kids, a house to clean, meals to prepare, blog posts to write, etc. My goal of striving to be the Proverbs 31 woman gets crushed each and every day.

I have learned I have to keep trying to be the best mom I can be. My best isn’t the same as other’s best. Some may have more challenges, some may have less, but one thing is for sure: we’re not all the same, and we’re not meant to be like everybody else. I have limits – my body has limits, and if I push those limits, I can find myself stuck in bed without a choice because I pushed those limits too far.

Some days it really hurts. The kids need me. They need me a lot. Because our older two have the challenges of having no social filter, I often get to hear how disappointed they are in me as a mother. I don’t play with them enough, some days I speak too harshly (I’m “mean”), my meals stink, they hate the lessons I planned that day, etc. It leaves me feeling defeated. When they’re having particularly “hard” days, that feeling is amplified.

Time with family and friends is often limited as well. We often have to cancel plans because somebody is having a particularly bad day or I’m so exhausted I just can’t fathom going anywhere. We miss church, homeschool activities, parties, and I often miss events that I planned on going to by myself. I eventually start to look like a “flake” because I can’t keep plans and I stop getting invited to do things. It’s hard to feel so isolated. I wish people knew and understood how much I would love to have the company and fellowship – how much I need it. A simple text to say, “We missed you today!” would mean the world to me.

The Blessings

Of course, with all challenges there are blessings as well. I have learned to appreciate God’s grace so much and am learning to accept that He loves me as I am and thinks I am beautiful and the perfect mom for our children. Even on days I don’t feel like I’ve “measured up,” I realize the only one measuring is Him, and that’s all that matters.

I’ve also learned the true definition of family. I grew up in a broken home, so to have a family that is so close and loving is definitely a blessing. Sure we don’t always get along, but we’re so close and love each other. For as many times as the kids argue or struggle with their sensory needs causing discord, they also say nice things to each other and play together like best friends. It’s a blessing to watch them grow closer to each other and closer to God as well.

There is a blessing in learning to do what works best for your family and just doing it. We understand each other. We learn each day how to function best as a family – a whole unit. Perhaps I’m having a high pain day, I can lay down and do our homeschool lessons from my bedroom. We work hard to support each other to avoid having “bad days.” Sure they still happen (fairly frequently at that), but we understand each other and love each other unconditionally.

So many people say I must be a “super mom,” but I don’t feel that way at all. Is it hard to find the blessings in the challenges? Absolutely! With God’s help, though, we continue to walk through all the challenges and get stronger every day!

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Emilee is happily married to her best friend, Joey, who is a 2x cancer survivor and Disabled Veteran. She is a full-time, homeschooling mom to their 3 special needs kids who amaze, inspire, and humble her every day. In addition to blogging she is a freelance writer and mompreneur with a crafting/sewing business with the same name as her blog Pea of Sweetness – a faith-based blog about homeschooling, parenting, special needs, and homemaking.