Healing Moms Newsletter August 2019
I remember vividly, like it was yesterday, the first time I had a stranger make a comment about my daughter with special needs. It was about seven years ago and we were eating dinner in a popular fast food restaurant. Her neruo-typical sister, Clover was crawling all over the indoor playground while Bryte sat next to me making her typical noises and stimming movements.
There were two little boys with their father in the same enclosure and the boys were very interested in Bryte’s behaviors. One of them asked their dad “What’s wrong with that girl?” As soon as I heard the question a wave of worry washed over me. What response would someone who knows nothing of my daughter and her situation have? It didn’t take me long to find out.
Even now, many years later that phrase lights a fire in my belly that could burn the world down. I would like to say I handled the situation with grace and compassion - I did not. Within about 4 minutes I had that dad packed up and running out to his truck, his confused sons in tow.
Do not mess with mama bear.
It wasn’t until years later that I really understood how compassion and education can make a difference in the way we “protect” our kiddos. Clover had a similar experience with two boys in her elementary school:
“Mom. Today when we were at lunch, Bryte’s class was in the lunchroom with us and two kids from my class said, "there’s that WEIRD girl.”
“What happened next?”
“Well, I walked over them and said, ‘She’s not weird! She’s my sister! She has seizures and she’s really cool!”
Cue prideful mother meltdown. The conclusion of her story is actually pretty amazing for a nine year old. Her teacher heard of the interaction and asked Clover if she would do a presentation on seizures so the class could understand them. She did, and later that year when Bryte was hospitalized we received a card from every single kid in Clover’s class.
The cure to prejudice is education.
Now, I am sure you are not a stranger to situations much like the examples above. We get stares and laughs, and giggles sometimes, and those are really not much of a big deal anymore. We know Bryte is kind of weird, and we like her that way. But what happens when the comments, stares, and prejudices are coming from someone closer to us - like friends or family members? It is a much more difficult situation to navigate when it is someone we have a close relationship with.
As a member of several groups on social media that support parents of kids with special needs, I have seen this topic come up way more than it should. I really want to talk about it. This is a real and painful thing we experience as parents and I think it’s important to bring it into the light instead of being embarrassed, heartbroken, or enraged that it is happening to our child.
I don’t have all of the answers for you. What I do have is my own experience - and maybe my experiences will speak to you, and maybe they won’t. But the thing that matters most to me while writing this email is for you to know you are not alone. The feelings of hurt and worry you carry are carried by so many of us, and if we are carrying them together - they won’t be as heavy.
There are a lot of examples I can use from people sharing their stories on social media groups about their children being specifically unincluded or uninvited from family events and gatherings. Each one breaks my heart in a different way and each parent has their own initial reaction to the hurt felt when something like that happens. I have watched as other parents comment - some in anger, some in sadness, but the really amazing thing is the general opinion of most parents is “let it go.”
And that just makes me chuckle because I’ve had the same reaction many times over the years - adding my own spicy expletives to the mix of course - and there really isn’t a better way to handle it, especially when it comes to our own sanity.
“You don’t want us at your wedding? Sure. Bryte is loud and disruptive and honestly I didn’t want to sit outside in 90 degree weather myself, so yes - thank you.” Let it go? It’s already gone!
What is important to remember that in these situations we have a choice, though it might not feel like it. It may be our initial reaction to feel hurt or angry, but just like my 9 year old daughter demonstrated, it is possible to move through emotions and address the situation for what it is.
In her mind, no her sister wasn’t weird. She had seizures and those boys just needed an education on her sister. It was only because she was calm about the situation that the opportunity to educate her entire class opened up and led to some really beautiful conversations about inclusion and understanding that all people are different.
So what can we do when those situations come up?
This pause may last a few moments, it may last a few months. The important thing is to give yourself permission and TIME to pause before you react while in the throes of emotion. Just like Lindsay literally chasing a man out of an indoor playground - emotions can lead to wild situations and if the person in question is important to us, we may want to give ourselves some time to fully process how we feel about everything.
If being unincluded upsets you, talk about it. Your loved one needs to know how they made you feel and why you feel that way. It maybe that you only want to support someones marriage or baptism or school program, and it feels nasty that they do not offer the equal amount of support to you when it comes to trying to live a “normal” life where everyone can attend all events. Either way those conversations need to be had so you can understand where they are coming from, and they can understand why it hurt you.
Be compassionate. It doesn’t matter how much people love us and our kids, they will always have their own agenda - and - AND - this is important, no one is under any obligation to put our comfort before their own, even when they love us. It’s ok for people to want quiet places, it’s ok for them to want to minimize distractions. Are they always compassionate about expressing these desires to us when they approach us? No, absolutely not. And this could be because they simply don’t know how to navigate the situation, or they are just acting like a baboon. Either way our compassionate response has the power to change the entire conversation. If you feel you are not in a place to have compassionate conversation, please see step 1.
Prejudice is a biproduct of ignorance. I can honestly say that I was nervous or apprehensive of people with special needs even after my daughter came along. I think having Bryte actually made it worse because I was hyperaware that interactions with her looked differently and I didn’t know HOW to interact with other kids or adults with special needs. I didn’t want to make a mistake. And then I discovered this really beautiful concept of ASKING QUESTIONS. How do you talk to this child? What makes him feel comfortable? What makes him feel uncomfortable? What type of responses or communications can I expect in return?
Most likely, people are not going to be asking these questions of us and that doesn’t mean we cant’ answer them. Now when we meet someone new it is really easy for me to give them a crash-course in Bryte. “Hi, this is Bryte, she may have a seizure while we are here with you, I will let you know if that happens. Bryte loves people and she loves when we talk to her and she expresses her self through BIG movement and various LOUD noises that can be overwhelming for some people. We are not offended if you need a break, we need them often.”
This usually opens the door for more questions and invites people to relax. Bryte can be overwhelming for me sometimes (especially at 3am when she’s decided she would rather scream all night than go to sleep). It is unrealistic to expect everyone to be compassionate and accepting of all of her (or my!!) little quirks especially when they are not used to her. I let them know it’s ok to feel overwhelmed, I do too sometimes.
Your child is special. Your child is special whether they wear a bridesmaid dress in your sisters wedding or not. Your child is special whether others choose to understand and know them or not. Your child is special simply by existing. There is nothing that can make that more or less true. When we are centered in the knowing that who we are parenting is special and unique, it really doesn’t matter if other’s see that in him/her or not.
Let it go.
This is so much easier said than done. One of the motivations behind the Healing Moms Retreat is to give moms the tools they need to release the guilt, blame, and worry as they watch over their kiddos and navigate the world for them.
You are special and just because your sibling/parent/best friend is acting like an inconsiderate baboon doesn’t mean they don’t care about you or your child. Have the tough conversations, have them with compassion, and see if you can learn to understand each other.
And if you cant, let it go.
I love you and all you do in your world,
P.S. It took me many, many years and a lot of practice to bring you these tools from a perspective of peace and compassion. Overcoming fear and anger is not an easy thing for us to do, especially as mothers. Don't expect to be perfect at compassion and forgiveness overnight.
I am so grateful to share these things with you and infinitely grateful for the work Elizabeth and Grace do on the Healing Moms retreats. I wish I had something like this to help support me at the beginning of my healing process. If you are ready to step into your own healing process, and need support - please don't hesitate to contact us and take a look at the Healing Moms info page to see if it is right for you.