Letter to a Special Needs Parent – 5 Tips for Survival

special needs parent

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? Yah, me too.

Any parent knows this struggle, but special needs parents witness a whole new level of judgement. 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 you 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.

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.

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 a 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 that 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 that these comments are well intended, but from my experience so far, I find this to be completely un-true.

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.
“Yah, 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.
“Yah, 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 superhero’s, not us – we just follow their lead. 

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 that you ARE doing a wonderful job. 

parenting a child with special needs


One thought on “Letter to a Special Needs Parent – 5 Tips for Survival

  1. Wanslay Marcel Cavalcante says:

    Good afternoon. Brazil – Sao Paulo

    DAD of a 5 year DMD.

    I saw your wonderful text on https://www.duchennexchange.org/blog/confessions-of-a-carrier/, and didn’t find the place to comment, but found your page.

    Great text, we’re going through something similar, my son Lucas has an exon 58 deletion (and no studies are underway for that number), and my wife will do the DNA to find out if she’s a DMD CARRIER.
    We found out in October 2019, and it was by chance, because our son does not have falls or climbing problems, on the contrary, is very well physically and healthy. But we found out from school suspicion about a possible low degree of AUTISM.
    I always believed in God, but today I get more attached to religion, I even leave a link of a Man who went through our Brazil and performed several miracles, was Father, and today is a BEATO by the Church of ROME.

    Where you are there must be various medicines and clinical trials to improve the lives of our boys, here where I am completely late and sad to know, we would very much like to be in the USA to improve and cure one day my LOVED son Lucas.

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