Those who will never understand our love

  I’m not sure awareness is ever going to happen for some people. 

I don’t want to sound pessimistic in any way but over the past ten years, I feel like I have become a better person while the world around me has displayed deeper signs of hate. Ten years ago, I met my husband and his then 3-year-old son Robbie. I got to experience his son’s charm and truly care about him before we went through the stages of diagnoses and grief. It struck my husband much deeper and sometimes I know I contributed to the problem rather than helped solve it. On our worst days, I found myself grabbing a pitchfork and joining the judgment mob against them because I truly did not understand until I had my daughter. I didn’t understand the difference between tantrums and meltdowns or how a child’s behavior isn’t always the result of bad parenting. And I’ve learned that it’s okay—nobody is expecting anyone to fully understand or try to solve the problem, they want people to try to understand just a little bit. 

Often, I say that Robbie prepared me for Ally. I never lost my temper with him and he never embarrassed me in public. For whatever reason, I remained calm when he would act out or throw himself on the floor. I was always prepared to run but I rarely had to chase him. While this wasn’t the case for my daughter, it felt like training for the marathon that she is. And while I loved him first, I advocated for him and would give it to any person who treated him unfairly. But I did not truly understand the pain of special needs parenting to the first degree until my own daughter struggled. 

There are many people out there who will never get it. They will never be nice, they will never understand, and they will continue to judge all children and their families out loud for all to hear. They are incapable of awareness and human decency.  Like the people rolling their eyes at the grocery store (I commend you for keeping your mouth shut), the bad teachers out there, and those judgmental parents we all encounter in public and who exclude our children. I’m not sure if we should give up, avoid those people, or keep trying to advocate. But I’m figuring it out day by day. 

I was at a gathering and sat next to a woman trying to get pregnant. Next to her was a mom talking about her son’s speech delay and current therapy regiment. A third woman commented on how over diagnosed young children are these days. Everyone has autism and speech delays. But she calls bullshit. Kids are out of control and need discipline and less screen time, not therapy…because she is tired of getting these cases at work. 

That’s when trying to get pregnant mom said it: 

“My biggest fear is autism or getting a fucked up kid. I kind of want to adopt a five-year-old who is pre-screened for that stuff.”  

People don’t always realize it when they say these things in front of me. I listened and said nothing at first. 

But then I threw a simple question out there, 

“Why?”

She said she saw enough of it at work and isn’t strong enough to deal with it. She can’t and she won’t. She wants a normal kid.

“Do you ever think your parents wished for a gay kid, or not to have one?”

I asked her fully knowing it’s not the same thing but the ignorance runs parallel. She looked like she wanted to punch me in the face and asked why the hell that mattered. 

“Because you love your child, the one that you get. No matter what you wished for,” I said.

She stopped speaking to me at that point and became part of the statistic that will never understand. Or maybe she did and hates me for it. Who knows. I’ll never see her again to find out.   

 I fully admit that I was probably out of line but once you put your boxing gloves at your first IEP meeting, it’s like they never come off (even when you thought you took them off to go out). The journey of parenting, in general, is hard because, at some point, all children struggle with something. Maybe the rise of instant communications and social media has brought on this age of parent shaming, or maybe it wasn’t as accessible for previous generations to process as often— but it has to stop. There are no pregnant women wishing for disabled children. This happens to people and there is often no rhyme or reason to it. It could happen to you, it could happen to your children someday, it could happen to your brother or sister. You are not special or immune to it. It just happens and you can’t prevent it.

This is the only truth you’ll ever need as a parent: you love your child, the one you get, no matter what child you wished for while you were pregnant. Every parent loves their child so don’t let your words be knives. Be more understanding, more compassionate, and keep your nasty comments to yourself. Awareness means understanding (even just a little bit). That’s all we need regardless of situations.

Advertisements
Categories: , , ,

3 thoughts on “Those who will never understand our love

  1. This is an interesting post. I’m around a lot of mean /ignorant/sometimes laughable comments bc I’m in so many groups /sports/activities at school and have four kiddos. I try to take an approach I saw an old therapist friend take when around others: I cannot control other people’s behavior or what they say/do. I won’t get mad or hurt trying to. I can’t demand compassion or even understanding. I can only tactfully remove myself. My son is only now at 8 years old able to do a sport without constant supervision. He still can’t handle play dates. If we go to a friends house I helicopter him. He’s usually the problem when it comes to bickering amongst friends kids. I accept this and work WITH him, not against others. It’s hard I know but try not to blame these parents or their kids for not understanding. I’m totally avoided and ostracized bc of my son and let me tell you I have stories that are unbelievable. But I can’t live in that space. I have my specific friends, my kids have theirs and no my friends kids are not friends with my kids. That doesn’t work. I live in a different kind of world, not typical but I’m not stressed about not fitting in or angry about not being accepted. My child’s behavior is a barrier between his classmates parents , and me. I e never been able to form a real friendship with anyone in his class. My closest friends are all from my other kids classes. This isn’t a coincidence lol. It just is what it is. I was confused by that for a long time, but I now know the deal and can work with it .

    Liked by 1 person

    1. Thank you. ❤️ With her brother it was so much easier. With my daughter, I think it bothers me because she is only in pre-k and she has made so many friends but been thrown out of every program which has been isolating for her. She wants so badly to play with specific kids who she can’t (because of their parents). It is sad to see her excluded because she knows. Her brother did not experience this until around 7. Its just sad when you have a kid who loves to do things they have always done with friends but is no longer invited to. Its not even about me. I do not need friends. It breaks my heart to have to sit here with her everyday when she cries she wants to play with kids.

      Like

  2. So I toooootally get this. I actually have two kids on the spectrum , my oldest daughter who’s 12 has had a lot of social issues growing up and they continue today. But from what I’m reading your daughter reminds me more of another little girl I know.. my daughters childhood friend.
    So I would say this about about our own situation and that of my friends : it was and is super important for ME to find friends that my daughter can connect with. I know that sounds really weird but it turned out she couldn’t figure out who was going to be a good fit for her and who wasn’t. I didn’t know either to be honest early on. I so cringe he when I think back to some of the moms I scheduled play dates with.
    My daughter needs the “nerds”. She needs the girls who are quiet or extra loud. She did well with the new girls in school. She never fit in with the cool kids even though she desperately wants that, it’s not to be. She’s not a cool kid in the school setting. (To me in all honesty she’s the most awesome talented cool girl I’ll probably ever know in my life but we’re talking about the school setting and pecking order that happens there)
    My daughter always thinks the cool girls are her friends. She thinks they’re nice to her (they’re not) but what’s worked for us is to BUILD and foster relationships with the girls who ARE her speed and who have a chance at long term friendship. I do that by forcing time together even to this day. I offer rides to these girls, I ask them over to our house, to our community pool. If I sense the parent isn’t open to this friendship I cut it off immediately and move onto the next potential friend. We’ve moved a lot so I’ve had to do this many times over her life and it’s sad bc she has to keep starting over but this is what has worked for us. I know almost have a sixth sense for these girls who might be a potential friend, but it took me a long Time.
    Special needs parenting – takes so much thought. You’re doing great 💕

    Liked by 1 person

Comments are closed.