I know your struggles. I have a sweet boy who is my world who is also developmentally delayed in social, emotional and behavioral areas. I know how challenging this situation can be. And I also know that the judgment, gossip and lack of understanding puts an added burden on you. And it’s taxing. It’s draining.
As a special needs parent, we have so much on our shoulders. We drive to endless therapy appointments. We keep our patience even when we want to scream. We plan, plan, plan instead of going with the flow. It’s exhausting, but we do it to keep our lives as calm and steady as we can. We do it so our children can be their very best selves, so they can gain skills and feel secure and comfortable.
We advocate tirelessly at school, repeatedly explaining to anyone and everyone about your child’s challenges, only to do it again when staff changes. We become professional researchers, making sure we know all the info about special education laws, IDEA, Section 504 of the ADA, etc. We hire advocates, if we’re lucky enough to afford them, so we have someone to back us up so we won’t get steamrolled when we sit in a meeting with eight or ten school representatives in the room.
Our phones autocorrect the word “it” to “OT” or “but” to “BIP” or “see” to “SSW” and we know more about executive functioning and emotional regulation than any of our other friends. We sympathize with parents we see out an about struggling with a child’s behavior because we KNOW. We know that everyone has a bad day and we know better than to judge a person solely based on their worst moment.
We take on a lot. And on top of this we have the burden of the other adults who just. don’t. understand. Who don’t WANT to understand. Who thrive on gossip and for some reason find it acceptable to talk about a child, a CHILD, and a special needs child at that. They talk about our children being badly behaved and label them as having thing like “anger issues” and it shows their ignorance.
There’s so much out there that tells us as special needs parents that we shouldn’t worry about this gossip and the ignorant people. Our friends and family members tell us this sometimes, too. And I try not to, I really do, but if you’ve read this blog before you know that this is an issue that just makes my stomach turn. It’s human nature to feel protective of your baby, and I can’t help but wonder why the most vulnerable of our children, our special needs babies, are the ones who seem to be treated so horribly and inappropriately by adults?
It’s a horrible thing, and I want you to know that I feel for you. When you’re working so hard and you have to face the cruel judgement from other adults about your child and your parenting it can feel so unfair. And it is unfair.
But you, sweet mama, know your truth. You know how hard you work. You know how hard your child works. And spending energy on the people who don’t want to see that is a waste of time.
I once had a parent of a child who had an issue with my little guy who I tried to reach out to so we could resolve things and she was just completely unresponsive. She wouldn’t answer emails and when I gave her my phone number she didn’t reciprocate and didn’t contact me. But she did talk to anyone else who wasn’t me about my child and said horrible things. And yes, it got back to me because people love good gossip. And I realized at that point that some people would rather have something to gossip about than to take the time to understand the social and emotional challenges that sometimes come with special needs children. That type of person is a waste of your time and energy.
YOU are not that person. YOU get it. YOU are compassionate, understanding and inclusive. YOU can make a difference. YOU can support a mama who needs it and withhold judgement. Your experience makes you not just an advocate for special needs children, but also special needs parents.
It’s easier said than done, but focus on you and your sweet child. Support other parents who need it. Talk to the people who do care, who do want to understand, and educate them. Share the information so that more parents of typical kids will start to understand and become advocates themselves.
You’ll never rid yourself of the judgers, but remember that no one ever regretted being kind. So save that energy you need for your child and take care of yourself. Take care of another mama who needs it. You’re doing an amazing job and the people who know that are the people who matter.
And you’re not alone.