Mom’s Survival Tips, Words Of Encouragement For Other Special Needs Parents

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Dear Special Needs Parent,

I’m not sure how often you are told this, but you are amazing. You get up every day and fight for your child. You advocate, you nurture, and you inspire the world around you. You might feel like a failure sometimes, I know I do, but you’re not. You keep fighting every day, and that alone makes you amazing. I hope this letter encourages you in your journey, and gives you helpful tips for surviving the world of special needs parenting.

Ignore Other Opinions

Have you ever had other people who have never walked in your shoes try to tell you what “they would do” if they were you, or how they would parent your child? Yeah, me too.

Any parent knows this struggle, but special needs parents witness a whole new level of judgment. It’s so odd to me that someone could truly think they know what they would do in a certain situation, if they aren’t living it. It’s sort of like someone who isn’t a parent walking by a screaming toddler in the grocery store and muttering, “I will never let my child act that way…”

Oh you just wait my friend, just wait.

Here is my advice: give them grace because they have no idea what it feels like to be in your shoes, so you can’t expect them to understand your choices. Just tune them out. Ignore the opinions of others and trust your gut. Let your decisions be between you and God, nothing else matters. Special needs parent or not, do what works for your family and ignore all the rest.

dad holds his son in his arms
Courtesy of Joice Kelly (via Unsplash)

Give Yourself Grace

If you take away anything from this, I hope you leave with this simple fact. You are enough.

You are doing enough.

You are trying your best. Repeat after me – “I am enough.” Please give yourself grace for the mistakes you make along the way. Instead of punishing yourself for falling short sometimes, pat yourself on the back for being a great parent. If you are trying, fighting, and continuing to wake up every day determined to give your children a beautiful life full of love – that is enough.

Figure Out Another Way

My boys have a rare disease that affects their muscles, so certain activities are difficult for them. They can’t swim on their own, ride bikes, skate, or play most sports the traditional way. We pretty much avoid things like bounce houses, trampolines, and playgrounds. BUT, if my boys want to do something we try to find another way to allow them to participate. They can’t swim, but they can enjoy the pool with a raft or our help. They can’t climb the playground stairs, but we can lift them up and let them use the slide.

mom holds her child's hands and bends to their level
Courtesy of Sai De Silva (via Unsplash)

Sometimes this is tough because we have to make sure we aren’t putting them in danger, but most of the time this works to help them feel included. The motto in our house is…

“You can do anything, it just may look different for you than it does for someone else.”

Last September, we went to an apple orchard with friends. Our friend’s son was jumping from one hay bail to another like a champ. My boys knew they couldn’t jump so they just watched him contently from the side – until my husband stepped in. Without hesitation he picked up both of our son’s (one by one) and proceeded to jump from one hay bail to the next, like the wonderful daddy he is. Love him.

Follow Your Child’s Lead

So many people hear our story and tell us to be strong. I’ve heard comments like, “Make sure you stay strong for your children, because they will follow your lead.” I know these comments are well intended, but from my experience so far, I find this to be completely untrue.

I follow my child’s lead, not the other way around. If my son is in need of help, I step in. If he has a question, I answer it. If one of my children is having a rough day, I offer comfort. My purpose is to be there for them with whatever they need. That is my job, and it will always be my greatest honor.

Our children are the inspirational ones, we just follow their lead. The other day I was tucking my oldest son into bed and I noticed he was struggling to climb into bed. Obviously my heart breaks each time I notice any progression, so I decided to ask him about it and make sure he was doing okay emotionally. The conversation was a breathtaking example of my point…

“Buddy, can I talk to you?” I asked. He nodded.

“Do you feel a little weaker lately or no?” I asked gently.

“Yeah, kind of,” he said.

“Buddy, I hope you know that it’s okay to feel frustrated, mad, or even sad sometimes. Those are all normal feelings. We’re here for you,” I said.

“Yeah, I know, but I don’t feel any of those things. I just feel happy,” he said with a smile.

You see, I’m not the inspiring one. Our boys are the superheroes, not us – we just follow their lead. 

special needs son rests his head on his dad's shoulder
Courtesy of Nathan Anderson (via Unsplash)

Keep The Faith

My final advice is to keep the faith. God is in control and we will never understand every part of this life, no matter how hard we try. All we can do is hold on to God’s hand as we journey through each stage.

When it’s hard, when it’s painful, and when it’s full of joy – just hold on tight. Being a special needs parent requires more than strength, it requires divine assistance. You don’t have to be a perfect parent to be a good one, just love them. Love them deeper, hold them tighter, and trust you ARE doing a wonderful job.

This story was submitted to Love What Matters  by Christi Cazin of Mama Needs More Coffee. You can follow her journey on  InstagramFacebook, YouTube, and her website. You can also purchase her book on Amazon. And you can learn more about Duchenne Muscular Dystrophy hereSubmit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Christi here:

‘Wait! It’s on us today,’ the baristas said. ‘My daughter’s name was Christi, but she’s in Heaven now.’: Mom appreciates little moments, they ‘turn out to be incredibly memorable’

‘There’s nothing we can play with.’ They solemnly looked around the backyard.’: Mom of boys with Duchenne Muscular Dystrophy shares how their resiliency turned ‘pity to praise’

‘There’s so much I wish others knew. So many incorrect assumptions make life even harder for someone like me.’: Special needs mom clears up biggest misconceptions

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