This is going to be controversial and I’m almost afraid to go down this road but you know what? Why the fuck not.

When does it become acceptance vs giving up? Feel free to to stumble through this with me…. As I’m trying to get my head above water while trying to navigate this little weird, rough, confusing patch of life we are hitting. This is just a word vomit of a post.

I feel the extreme need to start off with- I’m extremely grateful for my life. Elle has needs but I know that things could be far worse, not worse, but harder. They always can be. I have some friends who are straight medical warriors and go through so much more than I could ever wrap my head around. Their daily life is built around these needs. It feels unfathomable. We mainly deal with mental developmental issues and not much physical issues… other then her epilepsy. But I still struggle emotionally. Sometimes our situation feels heavy, I’m only human after all.

Do we ever give in to the stark reality of our girls developmental path? Or do we strive to do the more and all, even if it won’t change the trajectory of her path? Do we continue to sink and upend the household in the hopes and prayers and dreams of fully supporting our special girl to help her go a little further in life than anyone expects? How do we accept and be a peace without it looking like selfish laziness? Or giving up? Is this a thing?

I don’t work. I stay home and Elle’s always gotten alllllllll of the therapies. That’s what we decided to do in our household. I have amazing bad ass special needs mom friends. They don’t want to have to quit their jobs. It’s a part of their world that gives them a glimpse of THEM. They aren’t a special needs parent there. It’s a sense of relief for them.. a sense of normalcy… but then a career and job, it very much takes away from time for services. How do you actually do it all is the million dollar question.

Being a special needs parent…….. we need to be given 36 hour days. This 24 hour day situation just doesn’t cut it. How do you schedule allllllll of the therapies and meetings and Dr. appointments while working and taking care of the rest of daily life? How do you take care of the needs of your other family members? Do you tell one child they can’t do soccer because their sibling needs therapy and that’s the only time slot available? Waitlists are insane for services. Can you just say fuck therapies and quit for a few months? And restart the process of being waitlisted? In a life where your child will need forever services, is it ok to take a nice break and reset and rest? Or will you be guilt ridden and judged for taking a break? Will you look like you are giving up on your child?

Here’s the kicker- and the harsh reality…… this is forever….. my girl isn’t like my son per se. For example- he’s going to physical therapy for 8 weeks for his ankles….. he has an end game… it’s super easy to rearrange life to make that happen. But Elle, there’s no end game. Therapies will be a life long part of life for her most likely…. At least well past her teenage years… I do have to say, her needs are pretty easily managed, at this stage of life anyhow. She doesn’t need physical therapy. We just manage 5 days a week of school, ABA therapy, and one day a week of speech right now. She gets occupational therapy and a small dose of speech therapy at school during the day. ABA therapy is everyday after school. So we schedule life around that. But we are used to it. It’s not mandatory but it’s detrimental for Elle. It’s been life for the past 4 years but it’s hard to remember life before. The dare I say it….. Freedom. Services are limited in Humboldt. We constantly talk about moving somewhere bigger to benefit Elle. We finally decided to have a real discussion about it. Will moving help her and benefit her? Will it hurt my son? Do we move for services and school? Or…… here’s a thought…… do I fight and fight and fight to make a change here in our home town….. where our family and friends are? Can I make that happen? What if it takes years? What if by the time I make a change, she’s too old to benefit?! Well, at least it will help the kids who come after. What’s out there for Elle?

Will I find a new town that’s made for Elle? Or is just the entire United States lacking and a tad old fashioned and just not set up for the special needs community? What if we give her the best school on the planet but she still struggles? What the f is the right thing to do right now? And what’s best for Elle and her needs? Is it stunting her to homeschool her for a year or two until she’s more mentally ready to be at school full time? Do I keep her home and prioritize life skills like using the bathroom without assistance and dressing herself? Do we send her to the special needs school in our area? Is she- dare I say it- special needs enough for that to be a fit? Will it be a safe space where if she gets wet on the play ground and strips her clothes off that kids won’t look at her funny and call her crazy? Will she have a shot at making friends there? Will her going there put her brother at ease from worrying about his sister non stop? I feel like she’s in this limbo right now of being moderately special needs, and there’s no place for her. She needs to thrive. Not just survive. I want more for her. Back to what I’ve asked myself a million times…. Why the fuck is there no manual for parenting…

Basically what it all comes down to is this…. Is homeschooling her or looking into special needs schools a form of accepting life? Or is it a sign of giving up? In my eyes, it feels like a thin damn line. Trying to navigate all of this school stuff, realizing a typical classroom isn’t working for her, is kind of like being slapped in the face. It’s a lot of emotions…. I’m kind of suffocating. I can’t be the only parent out there who feels this way right?

The idea of giving up makes me sick. I will fight for all of my children with every fiber of my being until my time here is up…. Then I’ll continue to haunt anyone who fucks with them from the grave 😂😉 Am I throwing in the towel on trying to keep her in a typical classroom? Did we give this our all? A place where she’s so disregulated that I wonder how much her little mind is actually learning and retaining info. I mean, yes and no. It feels like failure on my part that she can’t thrive in a typical classroom setting even with her bad ass IEP being implemented. Like, the idea of looking into other routes right now is really hard to accept. It’s hard to accept that this is where her journey has brought us. I always thought, do alllll the therapies and she will be ready to mainstream by kindergarten. And here we are….. in first grade and reevaluating everything. Her teacher and aide are top notch. The school has made lots of small changes. But she’s still just……. she’s still miserable and traumatized…. When is enough enough? When do I draw the line and make a massive life altering change for her? Will I be able to keep her social enough in the restrictive special needs school setting? Will the district come up with an awesome hybrid model? Can we all work together to come up with a game plan for Elle instead of fighting with each other? Will she respect me as a teacher if I home school? Will she understand how to see me as a teacher at times and then a mom at others? Will it be a mistake because then she will really never get used to wearing pants?! 😂

I think that at the end of the day, acceptance is hard. Sometimes it’s easy. But mostly, it’s hard. And I’m having a hard time separating giving up and acceptance. It feels right. Acceptance. I’m accepting our forever. And I’m going to give Elle the opportunity and surroundings and tools to live her most highly functioning, beautiful, independent, happy life, even if it kills me trying. But right now, I can’t help that that acceptance is being weighed down by what feels like a heavy dose of giving up… and grief… and extra judgement… another prime example of how living in the special needs world is often such a mucky, gray place to be.

To be honest- I didn’t really know where this post would take me or end up, what’s new 😂I just sat down and let my thoughts pour out. It’s a really hard thing to put into words; the feelings and emotions that the special needs community experiences daily. One minute I’m like, I don’t give a shit what people think. And the next I’m like, will people think I’m giving up when in my reality I’m doing what I think is the best plan of action? I’ll continue to work on accepting the fact that I’ll never have a manual for this. I’ll continue to follow my gut and wing this life of mine… And hoping and praying for the best. I’ll continue to lean on my family and a few close friends while I stumble at times. And I hope that’s ok.

I’d like to dedicate this to two special humans. I’m surrounded by such a fierce group of friends and family. The best around. But these two humans, you are stuck with me… no giving up.

To my friend, my first special needs mom friend, Emily, who I love and value so much. You carry such a load in life…. Elle’s medical things are so so small in comparison to your everyday…. Thank you….For not judging me when I say things one person probably should never say out loud. For being a pilar of strength. For being human. For holding space for me when I know you don’t even have space for yourself most of the time. For always venting to me, and vise versa, and making my brain spin in the best and worst ways. Our ugly conversations often help me find light, and feel seen, and a path forward….. usually small…. But you sparked something in me last week…. and gave me hope from our sadness. I mean this in the politest way, Fuck them. Fuck the judgment. WE live this life. It’s so unique. And everyone’s paths are so different. It’s ok to take breaks and accept the hard. It’s ok to accept our forever. And I think it’s ok to sometimes not accept our forever. Maybe we will never be able to fully accept it. It’s not giving up. It’s survival. It’s reality. I’m so incredibly thankful to have you. I see you. And always will.

To my husband. I truly couldn’t do life without you. You always go along with my manic, crazy decisions. You always look out for my mental state and well being. You trust me with the choices I feel so passionately about when concerning our kids- especially Elle. I lead with my heart and you lead with your big brain. You are my constant. My ground. I just hope you remember that when things get extra tough- there’s always going to be too much sadness and uncertainty in this life of ours. And no matter what happens, I hope that we can both see that this life is full of only different versions of acceptance- it will never be filled with different versions of giving up.

🤎