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Being a special needs parent is the hardest and most rewarding thing I have ever done in my life. There is nothing that compares to the highs and lows that come with it. Maybe you are a special needs mom or maybe you know someone who is (and chances are you do). I’ve come to realize through my own experiences that there are some things that special needs parents want you to know.
The biggest frustration I have faced is when your village is just not big enough, especially in the times when you need support or just someone to give a little compassion. After talking to other parents this is an all too common theme and I felt compelled to write a post on how we can all help parents of special needs kids.
Most importantly, I think we all have something to learn and grow from. We all have different experiences and perspectives, but hopefully something in here will resonate with you.
So, how did I come to write this post? I had an experience when my son was about two that led me to wanting to scream from the rooftops. At the time, I felt crushed. The kind of crushing when the rug is pulled out from under you and everything feels like it is crashing down around you. Now, it is a dull ache when I look back on it. I have moved on, but I also want to take the negatives (even the unintentional actions of others) and turn it into something that can help others as we navigate through each day.
The experience itself was not some horrible event where my son was wronged. It was just one of those situations that made me realize that he is different. It brought to the forefront that life for him was going to look different than that of my daughter.
What special needs parents want you to know:
I realize that these are from my experiences. I also know that you can apply this list to all parents in some way, not just special needs parents.
Help me celebrate the milestones.
A milestone for my son looks a lot different than that of a typically developing child. I get excited (really excited) when he does something that a typical child already accomplished months (or even years) ago. Be excited with us.
Be cautious when giving advice.
I know you are trying to be helpful. Trust me, I do know that you have the best of intentions. But, sometimes it is just hard to hear. I have spent countless sleepless nights looking for answers, pondering the future, and just plain worrying.
Be our encourager.
There are times when I need help focusing on the positives. Some days are just hard. Remind me of a time my son made you laugh or one of the other many amazing things he does. I need to hear that on the rough days.
Offer to help with the everyday.
There are times when I just need a break. This is something that I know applies to all moms. Offer to bring dinner by or just come over and give us your company. It is the help with the everyday tasks that start to take a toll that gives me the extra boost of energy that I need to keep moving forward on the hard days.
Accept my son for who he is – an amazing little boy.
I know that sometimes his behavior can be frustrating. Oh my goodness, do I know. I live in a low hum of anxiety that in social situations he will be okay. I worry that he is annoying you or you are judging him or my parenting. Be understanding, patient, and kind.
I have a big job as my son’s mom. I am his protector, his advocate, his teacher, but most of all I am his mom. He lights up my world. I try so hard to balance this anxiety and worry that comes with being a mom and intensifies when you are a special needs mom. My list is just a tiny fraction of what special needs parents want you to know and embrace with us.