Going through the special needs motions.
Have you ever just been on overdrive with the things related to special needs and regular family life that you just felt like you were going through the motions? That’s where I am right now. I just need some more time in my day. Just a little would help.
I don’t even know when it happened. I have no idea at which point my mind went into Julia’s Safety Mode. There is so much going on in my family’s special needs world that I’ve just…checked out of it consciously, I think.
New meds? Check.
Labs to check that kidney function. Check.
Advocating for an inpatient stay for procedures that are usually outpatient? Check.
Figuring out old dog’s aliment, treatment. (Yes. My dog has special needs.) Check.
Working with tutors. Schools. Check. And check.
Med change and watch dogging for mental health changes. Check. And scary check.
Dermatology issues for immune suppressed kids? Ugh. And Check.
Behaviors related to mental health. Check and weary check.
Overwhelmed and moved into auto-pilot mode. Check and double check.
I think this is my internal coping mechanism. I honestly didn’t realize it until I went through this list that I am (and have been) coping with these particularly stressful times by pushing the reality of each individual thing aside. I do that by not adding them together. Reading the complete list makes me anxious, hence me just putting my head down and plowing through. Or swimming through.
As my friend and fellow Support for Special Needs member says, “Just keep swimming.”
I’m feeling like I am in deep waters. But I’m still swimming.
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Julia, site co-founder, contributes to Build-A-Bear Workshop’s blog about her daughter’s journey with special needs. Please visit to see what story is being told on our site sponsor’s blog.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
You described my state of mind so perfectly in this article. When I’m on top of things, I have lists divided by kid to keep track of their multiple needs. Then there are times like these where I try not to think about what’s happening until I’m actually doing it. Auto-pilot sounds about right. Oddly, seven of the things on your list are on our list too (though we check for liver function). Then there’s a couple more specific to us of course. One of which I am much to ashamed to admit I haven’t followed through with… emotionally I just can’t yet. Others I’d like to take a break from, but they’re unavoidable so I end up dealing with them poorly and then feeling guilty. We are in the thick of PTSD issues, enough said, because I know you live that too.
The question is whether avoiding making the list is better of worse. I might not have it on paper, but my mind is bouncing from one undone thing to another and I feel agitated most of the time. I feel like someone let a bouncy ball loose in my brain and my go-to response at the moment is to escape into something else. It occurred to me a couple days ago that while I usually keep this kind of stuff to myself as I go through my day having random conversations with friends, lately it’s been leaking out. The disconnect between what our life looks like on the outside and the reality of what we live is becoming increasingly difficult for me to maintain. I about burst in tears this week when someone expressed concern because they saw the strain I’m under. I can’t seem to find the sweet spot of balancing my kids right to privacy and my need for support.
I’m sorry that your going through this, but if it helps, I am so right there with you. Hang in!
Oh Caryn, I feel ya. And I feel for you. (I did chucked because we must be living the same life because the “procedures” are liver related.
I believe that I live in a state of PTSD — often keeping it at bay because of my desire to survive and live a life that seems “normal.” But I do completely put my needs second. However, I am also VERY GOOD at asking for help. I reach out a lot. I have a wide friend base that offer me the chance to reach out and not overwhelm just one person, you know?
I urge you strongly to burst into tears when asked about YOU- if someone is asking they are a safe place to land.
And reach out to me! Click through my name and send me a message here! Hang in there mama!
Oh, no, no, no, no… We can’t be living the same life, because if you kidney transplant kiddo is having liver issues, that would mean my liver transplant kiddo is having kidney issues and I DO NOT WANT TO GO THERE! I’m laughing and grimacing at the same time, sorta, because although we shot 1300 ml of half normal saline with her tube feeds last night, there was no pee. It’s her gut, I’m sure, except when it’s her gut there is nasty bowel issues and that has stopped too… But it’s her gut I tell ya! Guess who gets to have early monthly labs this week. Sigh.
It’s interesting that you read my PTSD issues as being mine. I was actually referring to dealing with my daughter’s medical trauma and attachment/abandonment issues. There was a sentence right after it about my own PTSD, but I thought maybe that’s too much and deleted it. You know though right? The thing about kids who have such deep trauma is you can’t see them through to the other side if your not emotionally healthy yourself, which means I have to face my own trauma both concerning her and all my other pretty little boxes. And that right there is more than I signed up for! Except it isn’t of course, because it just can’t be. Second sigh.
This helped. Thank you. I WILL be in touch. I’m also going to let myself rest for a bit before I pick up the preschoolers. Somehow I have to let go of the guilt. Bleh. Take care.