One appointment for myself today. Just one. A few trips to the pharmacy. An old prescription in a new form…a form that I have to pick up once a month now, instead of once every four months like before. And I was a goner. It put me straight over the edge. Thankfully, I didn’t let any tears fall until I hit the exit as I slipped my sunglasses on. It always seems to be the thing that tips me over the edge. It’s when I need something. How can I schedule an appointment for me when they have so many? There’s no time for that. I don’t want to spend the money on this prescription. We need it for them. My anxiety instantly hits the ceiling when I have a need. There is no space for that. No space in the budget. No space in the schedule. And most of all, no space in my brain.

So today I want to talk about me. I want to talk about what it’s like to be a special needs parent. I could tell you all about Autism but a lot of other people have already done that better than me. I’m a firm believer the best place to learn about Autism is from the people who actually have it so I’ll add some links at the bottom to my favorites. Check them out if you’d like to learn more. I’ve been pondering this post for days, with a lot of different ideas as to where it should go. And it hasn’t found its way yet. So I’m just going to tell you all of the things that have been rolling around in my mind.

Sometimes I don’t want to be a special needs mom. It’s not that I don’t want to be my kid’s mom. It’s just that I ONLY want to be their mom. Sometimes I don’t want to be advocate, physician, psychologist, speech therapist, occupational therapist. I just want to be mom.

Sometimes I get tired of all the explaining. My kids wrestle with hidden special needs…things you don’t see when you look at them. So that means a lot of explaining on my part. To teachers. To friends. To doctors. To my children. My kids wrestle with social and communication disabilities so that means a lot of explaining on my part. Explaining what others are saying. Explaining what others are thinking. Explaining the social cues. Explaining how and what to say instead. My brain is constantly trying to figure out how to put into words what yours and mine do instinctively.

Sometimes I don’t want to be nice. I don’t want to do the work it takes to say the thing I need to say. To the teacher. The friend. The child. In the delicate way that it needs to be said. It’s a constant. And it’s exhausting. I don’t want to go to the meetings. To say the hard things. To challenge. To push. To do it with grace. That’s hard. It’s exhausting.

Sometimes I don’t feel like I should even be wearing the special needs mom badge. My kids don’t have medical needs. We don’t deal with lots of medicine, surgeries, wheel chairs. We don’t deal with hospitals. I don’t worry that they will stop breathing or their heart rate will drop. So sometimes when I say I’m a special needs parent, I feel guilty because I know I don’t have it the hardest, by a long shot. I feel like maybe I’m not as much of a special needs parent as someone else.

Sometimes I think about my kids future…school, work, relationships. So much of what I do now for them will make or break that future. I have to think about that. Sometimes I have to stop thinking about that. Because really, I only have so much control. And it’s just too much to try to think through every possible avenue that might take them where I desperately don’t want to see them go. They will be grown ups one day and I have no idea what that’s going to look like for them. But I know I want them to have a fair shake. I have to do the work it takes to give them the best shot, while trying to let go of the end result. Some days I just want to set the weight of all that down.

Sometimes my heart weeps for the burden my children carry. When my son tells me kids at school call each other “Autistic” as a way to tease one another for “doing something dumb” I’m broken. I’m speechless. I don’t know how to help him. What to tell him to do or say in that moment. And then I see him handle it all on his own, in a way I never could have figured out and I’m amazed. Astounded. When I see the gift my children are. Not in spite of, but because of their disabilities. Such an intense level of joy and thankfulness washes over me I can barely breath. I’m so grateful I get the gift of being a part of it all. Sometimes I hold that pain and that joy together in the same cup. Most of the time I do. And it overwhelms my soul.

For the most part, this is my life. I’m used to it. It’s what I do. It’s what I know. It comes fairly naturally most of the time. I live with the big feelings and the big responsibilities like they are another load of laundry. But some days I just want it to stop for a bit. I want to pretend that it isn’t this hard. When I can’t finish a sentence or even a thought. I just want to not think about any of it for a moment. When the pharmacy makes me cry, I know I’m walking through my days carrying more than I’d care to admit. Even to myself.

I wanted to talk about me today because I’m thinking maybe you are me too. And maybe you needed to know that it isn’t just you. Maybe you need to know that you are valid. And you are seen. That the things you do matter. And that it’s ok to not want to do them all the time. Or a lot of the time. That you are doing enough. That it’s ok to take a break and just be mom. Or just be you. It’s ok to spend time. To spend money. To take care of your needs too. Your hard things may not be my hard things. You don’t have to look like any other special needs parent except the one that you are. Just like no two parents are exactly the same, no two special needs parents are the same. Maybe you aren’t even a special needs parent and you feel these things too. Because all parenting is hard. Our struggles are different. We deal with them differently. What’s hard for me may not be hard for you. It isn’t even or equal or fair. And it doesn’t have to be. And that doesn’t mean your struggle doesn’t matter. And that doesn’t mean we can’t have each other’s backs. So special needs parent or not. Special needs parent to a kid with extreme needs or just a few extra needs, I see you. I hear you. I am you. We are doing our best and that is good enough. Keep up the good work. It matters.

Links for learning about Autism:

Chris is an adult with Autism who writes about his experiences being an adult and child on the Autism Spectrum. He has some great resources.  https://autisticnotweird.com/

I love this site to: https://aspergersfromtheinside.com/ 

And from the same author:  https://autismexplained.com.au/

This one is written by a young girl who has Autism and is mostly non-verbal but able to communicate via some amazing technology. I love to read what she has to say. https://rhemashope.wordpress.com/

{You can also find all of those guys on Facebook. I’ve found it helps to follow just a few pages I really like on a particular subject. Then I can gradually take in info through each of their small posts. I don’t have to research for hours and its not overwhelming, but over time I can begin to have a much better understanding of something unfamiliar as I get to know these people and their lives through the little window of social media. And I don’t just do this with Autism! It works for all the things. I can’t know everything about all the things but I can know a little about a lot of things and that makes a big difference. It’s good to know what others struggle with. It’s good to get outside of my own struggles and see what other people’s lives look and feel like. It’s good to listen. So go read a bit and learn something new! Happy Autism Awareness Month!}

One thought on “How it Feels to be a Special Needs Parent {Because April is for Autism Awareness}

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