Tonight I caught a snippet of another blogger’s post headline, “No one attends an Autistic boys 6th birthday,” and instantly my mind goes there. I adore how this story ended, but it doesn’t always fair this way.
That moment when your head drops, your eyes fill with tears and your heart aches as you hear another child say;
“I don’t want to play with (insert your own child’s name).”
Although I am highly certain that this also happens to the average mom in town as well, I would strongly doubt that their reaction is the same as a mom of a special needs child. When I hear someone say “I don’t want to ______ with Ailbe,” I instantly fear another friend lost.
Along the road to finding out Ailbe had Infantile Spasms and beyond through her journey, we have lost some “friends.” Don’t get me wrong, we are high maintenance people. We come with meds that could potentially harm your kid if they get a hold of them. We come with developmental delays that can lead to confusion and arguments amongst the kids. And we come with an overwhelming amount of stress. Don’t we sound lovely? I can’t tell you how many times I’ve heard “Ailbe’s having a hard time communicating with you,” or “You need to share with Ailbe,” or “she doesn’t understand,” or basically friends coming over to be with me and their kids not having much interest in Ailbe. As a mother, this was/is an incredibly heartbreaking stage to endure. Don’t get me started on the biting and hair pulling stage. I can still hear the shrieks of one of her little girlfriends and instantly knowing that Ailbe went for her headband. It’s hard when your kid doesn’t bring intellectual strength to a kid meeting, when she can’t clean up like the other kids, enjoy a storybook or even a bowl of ice-cream. Being different plain and simple, stinks at times.
On the other hand we come with a ton of love, loyalty and laughter. With all the “delays” listed above, why do moms often tell me that their child asks to see Ailbe, cheers when they know they’re planning on visiting or tells their family how much they love “Ailbe’s house?” Why? Because Ailbe is awesome. She is kind beyond words and she is loving. Kids gravitate towards her because she lets them steal her toys. At this age, sharing is everything and being able to use all of your friends belongings without them literally having the biggest meltdown ever, has it’s perks. And, that is one of the many things Ailbe is. She shares; her food, her toys, her home, her family and her prized possessions. Ailbe’s friends genuinely care about her. This weekend we celebrating a friends birthday and I was prepping Ailbe’s pills that I use fruit snacks as the disguise for. Two of her friends said to me “can I have a fruit snack?” I told them “I’m sorry but these are for Ailbe’s medicine.” Both kids instantly questioned me as to why Ailbe needed meds. They didn’t complain or moan about not getting the fruit snacks, instead they asked “why?” Now, I even get tears writing this, but you can understand how loaded that question is and as I looked at her two best, three year old buddies, I said, “because Ailbe had seizures when she was little and these pills help keep them away, now can you help me find Bee?” Both kids responded with “oh” and then they ran off yelling “Ailbe.” I lost a year in that moment, as I realized that these kids, quite a bit younger than Ailbe understood what medicine was and understood enough to ask what was wrong with Ailbe. I was so impressed with them and their growth, but unfortunately, was also reminded of how far behind we are.
When you are a mother of a special needs child you can’t ever escape the worry that comes with it. There doesn’t seem to be an event, or moment in time when you aren’t somehow reminded of it. Whether it be a medication discussion, a parent complaining about their kids not sleeping well, or another teacher complaining about the “special” children in her classroom. I wouldn’t change places with anyone in the world ever, all I would change is what happened to Ailbe, I would heal her brain and give her two years of her life back.
I honestly don’t know what I would have done without those friends who have planned and attended playdates with us and have made us feel a part of the group. When so many excluded us, just as many took us in and truly loved us.
You see as much as you want to believe that your friends you’ve made are your friends as well, you deep down know that it does matter what their kids think. We have a strong core of wonderful friends. They have loved and cared for us during the toughest of times and even so, I’ve heard some of my best friends say that they didn’t invite someone to an event for their own child because their child “made the invitee list.” Now, in my mind I’m thinking at what point are we not on that list anymore. I don’t want us to be a pity invite and I don’t want to be excluded. I don’t want us to be the one that the kids parents made them invite. A friend of mine has three children and one of her children has Down Syndrome. My friend told me that when she was at a party, the birthday child said something along the lines of “I hate ____, my mom made me invite her.” In hearing these words I felt my heart shatter. I knew that regardless of my friendships, the love that these families have for us, the ultimate decision will eventually be in the truth of the children. And, automatically, I thought will Ailbe’s friends feel this way about her? Does she have friends at school? Does anyone go home and say “I played with my friend Ailbe today.” Without my friendships would someone choose Ailbe. I know many moms fear t their kids being lonely and I understand things are situational but the fear of your child feeling alone is tough to swallow.
I would always choose Ailbe. I would be her mother, her friend, her family, her caregiver a hundred times again. She is and will always be my “perfect.”
“I can do anything, through He who strengthens me.”