Have you ever been excluded from a party or event that everyone you knew was attending? You hear them all talking about it, and somehow you didn’t get the memo? There’s nothing worse than being that one person who is left out of an activity even if you weren’t interested in going. It has happened to all of us, at some point and it sucks. But it really sucks when your special needs child isnt included.
When you have a child with special needs, this type of scenario is part of the package. You know it, you expect it and part of you understands it. But its still hurtful when it happens, and you are the one who ends up being the bearer of bad news.
Remy is four now, and she has autism. The kind of autism that prohibits her from functioning without constant supervision and assistance. She doesn’t use words to communicate and has about 100 – 200 seizures a month. Most of the time, she is happy and resilient and is always the joy of our lives.
In our home, she is just another member of the family. But out in the world, she stands out; because she is different. Very different.
Its Hard To Be Different
I have a soft spot in my heart for those kids who are different in their homes and their environment. I was that kid who stood out in my family. My mom is white, and dad is black, so that makes me mixed or biracial (someone once called me a hybrid as if that was a compliment). I also wasn’t raised by my mom and dad. My mom’s parents raised me. My white grandparents. Therefore my dark skin and curly hair were vastly different than my brother with green eyes and silky hair and my grandma and grandpa who were fair skin and as white as they come.
I’m Normal, At Home
From a very early age, I was used to not fitting in with everyone in my family.
At home, things felt normal to me. I had a fantastic life and two loving and incredible grandparents who gave me all the comforts that a kid could want. I never lacked love, opportunity or attention. At home.
It wasn’t until we stepped outside of the house that I would realize that our family dynamic looked odd and raised some eyebrows. I am sure we were the talk of the town and the topic of many conversations.
When we would go to restaurants, I would see people stare. Stare at the table with the two old white people with a black kid with big bushy hair. Nowadays, it’s not as out there and being in liberal California, it’s not as uncommon as maybe other parts of the country, but in any case, we were different.
Calling Border Patrol
One time, my grandma took me on a road trip to visit Canada. At the border, the border patrol searched our car for over 2 hours and interrogated my grandma to make sure she wasn’t kidnapping the little black girl in the backseat.
At school, people would ask me if I was adopted and where my mom and dad were. Frankly, I wondered the same thing. Why is my skin dark and where are my parents?
The one incident that summed up what it felt like to be the “different” one was at a family reunion. This was my white grandmas side of the family, and there were about a hundred or more people there, most of which I had never met before. While everyone was eating and visiting, some of us kids went swimming in the pool. A girl who I had never met before wanted to start a game of Marco Polo. I was excited; I LOVED Marco Polo. She looked at me and said
“You cant play, this game is only for people who are a part of the family.” “I am, Wanda is my grandma.” “No your not, you are lying, you are black, and THIS is a white family. You cant play”.
I don’t remember what happened after that. I only remember the feeling of shock and rejection for being the only black girl in the family. I was an outcast.
I didn’t have any contact with my dads side of the family so as far as I knew, I was THE only black person that I knew.
A feeling that stuck with me for years to come. Not only did we get whispers and staring out in public, now it was happening at my family reunion.
Grandma’s Always Have Wise Advice
My grandma always told me that God didn’t create me to blend in with everyone because if He did, I would. All I knew is that being different was painful and isolating, I just wanted to be like everyone else. Light-colored skin and a ponytail that would sway back and forth when I skipped down the street. Not one that took multiple hair ties to pin back.
She told me that the color of my skin, the texture of my hair, the fact that my grandparents raised me, would one day be a blessing that I would be proud of and would help shape my character. It would be something I would never want to change. I told her she only was saying that because she was my grandma and she had to say nice things. But she was right in the end as always, I wouldn’t change a thing now, and I KNOW that my childhood was a gift and blessing exactly the way it was.
No Tanning Beds For Mua
She also said that I was lucky to have dark skin because people spend hours laying in the hot sun trying to get tans and I didn’t have to. That always made me laugh and gave me something to tell anyone who asked why I was black and no one else in my family was.
As I got older, I noticed that some of the most successful and beautiful celebrities were mixed, just like me. I saw people like Halle Berry, Tiger Woods, The Rock, Alicia Keys, Mariah Carey, Lenny Kravitz, Bob Marley. I always wondered if they felt like I did when they were kids. I don’t know, but I would guess that they knew exactly what that was like. I started to see that being different didn’t have to be a bad thing, it could be something that makes me beautiful and special. Now I embrace it.
“I Have A Dream”
I also love the fact that Martin Luther King had a dream and I am a product of that dream. Except in his dream, white people and black people held hands, and my parents did a little more than that. Ok TMI, HA
So now I am all grown up and have four children. One of them, Remy, has special needs and because of that, our family is in the category of “different.”
Its fine, I embrace our difference. But there is one area that I still have a hard time navigating. Its when Remy is treated differently because she has special needs. Its when she gets the stares and the judging and the pity.
You Are Invited To A Party
An old friend invited our family to a party at a rock climbing gym for her daughters birthday.
I was nervous to bring Remy to a neurotypical birthday party but thought it was a good idea to try and be social and do things that little four-year-olds do. As soon as we got to the party, I knew it might not have been a good idea. It was pretty evident that Remy was very different from everyone else.
Why Is She Making Those Weird Noises
While all the girls were playing together in their circles, Remy was trying to run into the men’s bathroom and play with the sink. While all the girls were chasing each other and playing tag, Remy was grabbing the scanner at the cash register. While all the other girls were laughing and talking about Princess Sofia, Remy was stimming, jumping up and down and making funny noises.
It looked as if Remy was in her own world and not interested in joining the other kids but I caught her staring at the group of girls while keeping her distance. As if she desperately wanted to play with them but didn’t know how to do it. She spent the majority of her time stimming and found repetitive movement type activity to engage in.
It was time for the kids to gear up and start climbing. All the kids grabbed a harness, but by the time we got up to the counter, there wasn’t any left for Remy. The climbing part was what I was most excited for Remy to do at the party. She LOVES climbing, and I knew she would be amazing at it. She would need the extra help of course, but THIS was something she could do.
I asked my friend where I could find the harness for Remy. She said
“Oh, There isn't enough room for Remy to climb. They said only 20, and there were a couple of other kids from another party who wanted to join, so there isn't any more room. Sorry”.
Ouch. I guess she didn’t think that Remy was capable or interested in climbing the wall with the other kids, so it didn’t occur to her to include Remy or ask me if it was the type of activity that Remy would want to do. Luckily Remy wasn’t even paying attention and was happy to play on the other side of the gym.
There’s No More Room
That phrase just kept ringing in my ear. “There is no more room.”
I didn’t want it to bother me, but it did. I think it bothered me partly because I know what its like to be the different one but mostly because it’s just a situation that is bound to happen throughout Remy’s life and it doesn’t feel good. No one wants their kids to be excluded.
But I know that it wasn’t my friends intention to exclude Remy, she wouldn’t have invited us if she wanted to do that. She just probably didn’t really think Remy would be interested. But in any case, Remy was the only one not participating and she would have loved to.
My Aching Heart
I imagine one day when Remy can better communicate; she may ask me why she is different from the other kids. Maybe she will wish she could be just like everyone else. When that day comes, I will with the deepest part of my soul, understand her hurt and cry on the inside for her.
But I will give her the same response that I got when I was a little girl.
“You were not designed to fit in. Your purpose isn't to be like everyone else. God has a different job for you. One that is unique to your life and one that was meant to enhance our world. To make it a better place. God never makes mistakes, and He doesn't design something or someone with no purpose. It might not feel good to be the one who is different, but there is a place for you, and you are exactly the person who you are supposed to be.”
I even hope that when that day comes, Remy will be able to look at other girls just like her that she can admire and aspire to be. Just like I did when I first found out that Halle Berry was mixed like me.
Going Home, Feeling Sad
After the party, I logged into one of the private Facebook groups I am a part of. A support group of families affected by the genetic mutation that Remy has. PCDH19. The first post I read, spoke to me directly. A mother was sharing about her daughter not getting invited to a birthday party, even though they were family friends. That post got tons of comments from other moms who had a similar experience with their children getting excluded from activities.
We Have All Been There
It was then that I realized that even though you may be isolated in an environment or situation, there are so many other parents out there going through the same thing. That gives me hope and a sense of community of which I am proud to be a part of.
It Takes Work, But Its Worth It
Even though it takes getting onto a Facebook group, or texting with a friend who lives on the other side of the country, there are so many of us who do understand living in a world not designed for our special needs children.
I don’t know how I will respond the next time we are invited to a birthday party for a neuro-typical child. I might have a conversation with the host before the party, to communicate what to expect from Remy. Maybe I will take Remy to the location of the party before the party day so she can get used to the place. I might prepare Remy better with showing her and telling her what to expect.
In Any Case
Whatever happens, I always want Remy to know that even though she may not fit in, there is a place here in this world for her and there are so many other kids who go through exactly the same things.
Tell Me About It
Have you been in a similar situation? Do you ever feel isolated because your child is different?
When was a time that your special needs child wasn’t included? Share in the comment section below.
AND, lets stay connected through email. I would also love to send you my newsletter where I share lots of my tips and ideas I am learning along the way through this hard and tiresome journey.
Side note, Zach and I have since been back to the climbing wall place on our own and Remy rocked it as I knew she would. It was better too because there wasn’t a bunch of other kids competing for a turn. All ended well in our lives, and I am excited to see where this whole “climbing” venture will go.
Thanks for stopping by, Live Well