5 Things I’d Like to Remind the Team Trying to Help My Son With Special Needs
I don’t think you’ve met one another, but you all play a big part in the development and well-being of my son. All of you play a different role and help us in many ways.
You’re a group of experts who I never thought I would need to know during my pregnancy. The average child doesn’t need this many doctors to stay well or therapists to learn how to say words or lick a lollipop.
My son was born different. I get it. He’s unique. It really, really upset me when you said this will be a “learning opportunity” for you. It makes me feel like my son is a lab rat. I don’t mean to take it personally, but the excitement you have at times makes me uncomfortable. Maybe it’s because I don’t know your intention, or perhaps it’s because I worry you’re just looking at my son like he’s some kind of experiment. I’m sure you have all the best intentions. But there are five things I would like to remind you when dealing with my son and me.
1. My son is more than a percentage on a chart or a number on a test.
He falls below in nearly every category and being constantly reminded how low we are does none of us any good. I would urge you to stop looking at the numbers. I get that my son falls in the less-than-1-percent rank for expressive speech, 1 percent for gross motor and ranked poor in fine motor skills. I know he’s only ranked 4 percent for his height, and trust me when I say this, I’m well aware that he’s skinny. I know the dietician you brought in was only to help us, but I can’t help but feel like a failure every single time you bring out these numbers. I have an idea, though, that can help all of us. Let’s just stop looking at the charts and numbers and just see how Von compares to Von. He’s growing and gaining weight. He’s learning new skills daily. He doesn’t learn the same as neurotypical children, but that’s OK! He’s not neurotypical so I would appreciate if we would all just stop trying to put my little-square-pegged boy into your round hole charts.
2. We’re really tired.
Sometimes it’s hard for my son and I to implement all the strategies you want us to do to help him succeed. Every single week, you give us endless amounts of homework we need to do to teach him to speak, eat, walk up stairs, run, jump, hop or even to just socialize. I get it. You’re all enthusiastic and want him to thrive. We have therapy appointments daily, and there’s no way we can fit all of this in and still enjoy being a parent and a child. We’re not in a hurry to develop. We are OK developing at the speed of Von. Please don’t be disappointed when we haven’t done our flash cards, brushing activities or lollipop exercises. Sometimes we just want to be a mom and a child.
3. We want to thank you for being compassionate and understanding.
We know your job is hard, and you don’t have all the answers for us. We know we may never have a prognosis for what life will look like for Von, and we appreciate that you will never stop helping us search. Thank you for returning our emails at 9 p.m. or calling when you’re off your rounds at 8:30 p.m. Thank you for sending us notes to say you appreciate how hard we work to implement his care. Thank you for recognizing how difficult this is for us, and thank you for being our advocates for better care, better medication and better therapy. Von and other kids like him would fall between the cracks without your constant push. We know how hard you work and how parents can yell and scream, so we know it can’t be easy.
4. I’m sorry I’ve yelled at you.
I’ve cried and told you that you were worthless. I’ve screamed about how I don’t understand why you can’t fix my son. There have been times my mouth has gotten the better of me because I’m so incredibly scared. I hate that we don’t have a crystal ball to predict his future. Not knowing if he will ever live life independently terrifies me. Knowing he may have been born sterile is heart breaking, and there are times when I reach my limit and my fuse blows. I’m sorry if you’re on the other end of my frustration and anger. Please know I’m not angry at you, but I’m sad and frustrated with a situation that feels absolutely hopeless at times. I’m sorry I’ve been less than perfect, and I hope you know I appreciate what you do.
5. A 30- to 60-minute appointment is only a fraction of time of our lives.
We have so much to celebrate with you, and we wish our appointments could be about our accomplishments instead of our challenges. We know it’s just simple things. Von just learned to lick. He just started to put his hands in his mouth at almost 3 years old. He’s finally calling me “Momma” and saying “no” consistently. He isn’t scared of strangers or situations like he had been before we started this journey. You’re all helping us get to where we need to go.
I need all of you to be a part of the celebration. So please find the time during every appointment to celebrate our small victories. We’re moving mountains daily, and you’re helping us get there. Cheers to that!
Thanks for being with us on this journey. We know some of you will leave us, but we want to know we won’t forget your commitment to helping us. Thank you for being “the team” that helps us thrive.
Katie (a mother to a tiny super hero)
Follow this journey on Von’s Super Hero Facebook page.