It’s OK to NOT Be OK!

It’s OK to NOT Be OK!

Can we be honest for a second? Seriously. As a parent, we all see and feel hard times when we parent our children. We worry with a multitude of questions. Are we making the right decision? What if it is wrong decision? Could I have handled that better? What can I change? What should stay the same? And the list just goes on and on. With a special needs child, this is amplified even further. Am I doing enough for them? Can I do better? And in those moments, we don’t feel okay.

This week has been one of those weeks for me, personally. Keelan’s sensory seeking has been continually increasing over the last couple months. We’ve been noticing more oral seeking including more noise making, chatter, etc. Dinners out, car rides, visiting with family, have all become increasingly harder the steady noise going on. I typically can tune it out, but my other 2 kiddos, can’t always do that. Additionally, his attention span has been decreasing at the same time. And we noticed that it has really gotten worse and worse since Christmas Break that lead to multiple weeks of school being disrupted from snow delays and cancellations for week after week. We’ve been monitoring and noting it at home. However, a couple weeks ago, Keelan’s school occupational therapist reached out noticing the increase oral sensory seeking at school, then this past week his special education teacher reached out and they are noticing it more and more as well as the decreasing attention. Now, let me say that I am EXTREMELY blessed to have such an active treatment/support team for Keelan. They don’t stand idly by or let it go. They reach out and they help look for solutions. This week, his support school and outpatient therapy team have been actively discussing options to help support him to turn this regressive behavior back around. His family and I are also working to put him first a little more and I’ll be traveling with him here in a week or so for our first 1:1 reset trip. (more to come on this)

Now when weeks like above happen, I tend to go into “HANDLE” mode. Legit. I take each conversation and digest it, evaluate it, research it, create a plan, and move forward with plans. It’s a literal “GO” mode. There’s no feelings in it beyond the love behind the actions to do the very best for him. But that’s it. It is action and outrunning the feelings that come with it. We are going to put him first, keep his routine first, be more intentional, etc. That’s the plan. Plan in motion.

Then we fast forward to Sunday Night. 2 Hour delay for school on Monday due to a weather incident over the weekend. Okay, no big deal. I’m working from home. We’ll just relax a little, I’ll do a little work, we will keep our breakfast and morning routine, just a little later. Good. All set. He’s good. Monday Night- 2 hour delay for Tuesday. Another school routine day messed up. It’s okay. I’m working from home again. Not helping with school routine but we can do our morning routine and should be okay. Tuesday afternoon – 2 Hour delay for Wednesday. SERIOUSLY?!?!? Ok. Action mode again. I’ve got this. I’ll message work that I’ll be late tomorrow because I want to keep Keelan’s morning routine if at all possible since we can’t control the school routine this week. It will be okay. Less than an hour later – Keelan’s school is going remote for Wednesday. BREAKING POINT!!!

This was it. I BROKE! Are we kidding right now? It’s not the school’s fault, or anyone’s fault, but I was upset. I switched my work day to work from home again. I’ve got to stay home with him. I need to stay home with him. He’s going to have a packet to do and it is my job to do it with him. No one else’s job. I tell myself – “My kid, my responsibility.”

And then the questions to myself start rolling. How am I possibly suppose to help my child get better if the world is fighting against me? What can I do? I sat in tears for a little while, just feeling it all. Why are we backsliding? How can I help him? Somebody tell me what I can do? Then it spirals from there. Why Him? Why Us? Why does my child have Autism? Why can’t he just be neurotypical? Why can’t we be like other families with neurotypical kids? Will he ever be able to participate in things normally? And trust me that last question is a grief that kills you slowly and then you spiral into the future of so much uncertainty and more questions. And I sit there silently, lonely falling apart. Falling apart behind closed doors from my children, my family, and my friends. Because it feels whiny to vent to them, and feels like a self pity party. Poor me, I have a special needs kid. So I don’t reach out or share. I sit in silence with my own tears and thoughts and I’m not okay.

I pull myself together to finish the next few work items. I have a conversation with my mom about the next day’s plans, and she offers to help. I refuse her help. WHY? Why do I refuse her help? Because he’s my child and my responsibility and I need to help him. I can do it. Don’t whine, don’t lean. I need to do this on my own. So I place myself further in this lonely silo. Now don’t get me wrong here, this reaction was NOT right at all, but it is real. It’s exactly how I feel and why. Because in the less vunerable moments, I truly know that Keelan has the best support team of family that anyone can ask for. But in that moment – all you can think is I need to help him. It’s my job to help him. I need to make sure that I put him first. So I do it, by myself.

About an hour or so later, I reach out to my best friend to hear their voice. I just need to hear some reality, normalcy. It doesn’t matter if their day is going great or awful, I just need to hear about someone else’s day. They share without me saying anything about my day being a mess or letting on that I need them. The discussion goes on and I share at some point that before Keelan’s swim practice, we are going to DQ. They innocently say, you can’t keep feeding him DQ everyday. OUCH. I quickly chirped back and said, I would love not to, do you have any suggestions, cause I would do anything to get out of that routine and get him to try new foods, healthier foods, etc. And they responded, well what do the therapist and doctors say, and we talked about food chaining and the effort that will take, and the new multivitamin I’ve been able to place in his juice daily, and so on. But as the conversation goes on, I can feel myself tearing up again. WHY ?!?! They are just showing interest in Keelan to learn more. The reason why is because I can feel the “It’s not fair” building up inside me. It’s not fair that I’ve had to put all this thought and effort into just feeding him. It’s not fair that we have to deal with this. It’s not fair that Keelan has this. My best friend quickly picks up on it and says – “Why do you sound like your about to cry?” I replied, because I’ve been in tears half the day and I’m not going to complain to you about it. We both say a couple more sentences and I quickly wrap up the conversation and hang up. I’m going to break apart in silence and alone. They can’t hear it. They don’t need to see it. It’s not their problem. It’s MY problem. And once again I hide it. I hide it from the people I trust most in this world.

WAIT?!?!?! When did not being okay have to hidden and alone even from the people you trust most? For the rest of the day, I barely kept it together and couldn’t wait to just crash in bed, promising myself that tomorrow will be better. I will not let this sorrow carry into tomorrow. Can’t dwell in it. I will give myself some grace for today and giving into the saddness. But tomorrow it’s back to “ACTION” mode. And I did. Back to action mode.

So Today, I was at work when I had a co-worker come up to me after a meeting and wanted to talk mom-to-mom. They shared that their child may have a sensory disorder of some degree and she wanted some advice on where to start to help her child. As we talked “business” about who to talk to, what steps to take, etc., I could feel myself back to “action” mode and watching her do the same. But at the end of the conversation, I said to her, “Make sure you give yourself grace. And It’s okay to not be okay.” And I shared with her that this week, I had a day where I was not okay, and that it comes and it’s okay to feel that. And as soon as I walked away, I realized I’m not taking my own advice. And to be honest in those dark moments, I’m probably not going to take my own advice. It’s just not going to happen because I live in this world of autism, therapists, planning ahead, routines, adjustments, etc., and it’s hard, exhausting, and worrisome.

BUT, I’m going to work on it. I need to take the help that my family offers because it is okay. They can help and they love him to. I’m going to let the tears fall in front of therapists, teachers, administrators, family and friends. It doesn’t make me weak. It makes me human and shows just how much I care about my precious, loving little boy. It shows how much I want him to succeed in this world and how much I will advocate to help him get there. In a training I recently took, they shared that studies show that mothers of children with special needs, particularly autism, experience stress levels comparable to those of combat veterans. So while I typically feel I handle everything that his diagnosis and life in general throws my way fairly well, that stress is still going to live there. I’m going to BREAK. And in those moments, I truly feel the loneliest, but I’m not alone. I know this and I’m super thankful for that.

So what’s my point. It’s okay to NOT be okay. It doesn’t make you weak. It just means that you love your child so much that your heart breaks for them. It also means that you love your child so much that you’ll be there when they achieve whatever goal is next, no matter if it is big or small. You’ll be the one who helps them get there, you’ll witness it, and you’ll help them celebrate. So my prayer for you and I, no matter what you are facing, is to remember to give yourself grace. Stop saying your “FINE” if your not, and know that it is okay to NOT be okay. Reach out to others and listen when others reach out. It’s a lonely journey, but that doesn’t mean we have to walk alone. Now if I can someday take my own advice. Maybe someday.