Ironic

Last week was one of those weeks that flattens you. You’re beebopping along, doing your thing, and then the wind gets knocked out of you completely, and you find yourself struggling to find the words to describe all the things that are going on. Every night I thought, “I should be blogging about this,” but that seemed like too much to say and process and each day brought a little more until my post would have been filled with only this:

AGHGHGHGKSHRRRRRRMP!

Eloquent, yes?

So a lot went on and I’ll get to all of it at some point, but here are two biggies:

On Monday I began to experience what I can only describe as therapy fatigue. To the best of my knowledge, this is not a real thing, but I can assure you that I was feeling it and I have felt it before. I think that whenever you are in the midst of long-term therapy–the never-ending kind that just goes on and on as your kids hover in the “always behind place”–you eventually reach this point. It’s the point where you tire of taking about what’s wrong with your kid. When you feel like progress is being made, but the focus is never on the progress, or maybe that the progress will never be enough. I don’t know.

This is not a criticism of the therapists and I hope it doesn’t sound that way. It’s not their problem–it’s mine. Or it’s just one of the symptoms of living your life in therapy.

So I guess it’s only fitting that on Friday, at a six month review for the twins, I was presented with a new plan for their therapy. Ten months ago, August was being seen weekly mostly to monitor feeding and fine motor since he was so tiny when he was born. Then we added speech when he had that big regression at the one year mark. Then we added speech for Louis because he wasn’t talking either.

The new plan includes all this plus OT for Louis and getting both of them into special instruction as well. They would also like to have a child psychologist come out bi-monthly to give tips on how to deal with their twin interaction. You see, Louie is so dominant and aggressive, there’s a bit of concern that August is actually developing around him as opposed to with him. So, we’ve got six appointments a week now. With an additional one every other week.

I’m doing my best not to think too hard about what this means for the boys or their future. I’m trying not to go to the place in my mind where I think about having four kids with disabilities. I’m trying not to  question my abilities as a mother and caregiver. I’m trying to focus on the positives.

But that can be hard sometimes.

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Comments

  1. Fatigue for sure. There isn’t any way some of those therapists could come at the same time? In Iowa we have the Area Education Agency (I don’t really know what that equates to in other states, but I know it is an Iowa thing). When I was taking early childhood special education classes I had to shadow the birth to 3 gal who worked with general disabilities, her name was Stacy. She was also the coordinator and would coordinate the various professionals to schedule meetings at the same time. For example some of the home visits I attended had the speech and PT gals there with Stacy. And while it seemed a bit overwhelming as the outsider, neither the mom or child seemed concerned about all the extra adults in the house for an hour or so each week. Each professional would bring a few toys that would intrigue the child and lead them into some work on their goals and since speech, physical development, and cognitive development goes hand in hand, they could all be working towards their goals at the same time. Also they could alternate between working with the child and talking to the mother because there was another adult to entertain the child at any given time. Something to think about anyway. Hope this week is a better one for you.

    • Stacey–I’m not exactly sure if we could do this. I know it’s against the rules to have two therapists working with the same child at the same time here, but I do have two children, so maybe there could be some overlap? I don’t know. Our speech teacher comes twice a week, but she does thirty minutes with each boy each time instead of a whole hour just once. That seems to work. Still, I’m going to have a lot of people coming and going–at least I’ve done this before?

  2. Sorry you’re having a rough week, Katy! Pardon my asking, but you mentioned 4- is Rex going to need therapy as well?

    • So far Rex has not shown any signs of needing therapy–in fact, he babbles more than the twins! But, when you’re at three out of four, you do start to get a little nervous. Like maybe you missed some obvious genetic flaw or something. I do know, however, that Rex was my only normal pregnancy and delivery, so perhaps he’s got some things in his favor that the others don’t. I still make him sit in the room while the twins have speech. You know, just in case.

  3. I am soooo sorry. Praying for you. I thought three appointments a week was bad. You are an AMAZING mom and I can’t wait to hug you in a couple weeks!

  4. Paulette says:

    Oh yes, therapy fatigue is a real thing! I call it therapy burn-out but same thing. I love our therapists, and after seeing many of them for a few years now, I consider them friends. Sometimes I just tire of opening the door over & over and seeing their faces there day after day. It’s like Groundhog Day for autism moms.

    • I think that’s a pretty apt description! Ground hog day. It’s getting really crazy for me because we have all the same therapists from before–just new kids. Sigh.

  5. Are you kidding? I have therapy fatigue and its only been a couple of months and hopefully not forever and it’s for myself! I imagine there are moms who have soccer, baseball, piano lesson, brownie and/or any other kind of activity fatigue. Kids who ” need” is stressful. that and second guessing yourself would wipe out the average person. Luckily, you aren’t average! Living half your life in a car adds another level to it. Thank G- d you are able to do what you do and also thank G- d for blissdom when you’ll get a much needed and deserved break from it all and have some child and therapy free fun !

    You are awesome and human, Katy, and therapy fatigue is real, no doubt about it.

  6. Wow. That is a lot. You can do this, though. Love the pictures of your kids. *HUGS*

  7. Oh Katy, I am so ashamed of myself. I have been following you on Twitter for over a year and have not actually been to your site before. Ashamed. It is so meaningful- beautiful- hopeful. You are amazing! I’m also in New Orleans if you need a break.

    • Don’t be silly! I think we all add people on Twitter and then get around to reading their blogs!! I’m glad you did come by today to read it.

  8. I’ve also just grabbed your button and included it on my site. Hope thats’ OK.

  9. Therapy fatigue. Totally makes sense. I don’t know about you, though, but after awhile, I used therapist time to get some laundry, food prep work, etc. done. I know technically we were supposed to be observing so we could “learn” and “recreate” the “therapy” ourselves, but yeah, I think you’ve BTDT.

    • Yes! Well, I’ll admit that I do sometimes wash a few dishes or whatever, but it’s hard for me. I watch my kids like hawks to see how they’re doing. Like my being there will change anything!

  10. LisaSLP says:

    Are any of the therapists willing and able to come at the same time! Co treating the same child, or one with one child, then switch? It is definitely worth looking into

    • I will have to see. I think I can swing things as long as people don’t want to come during nap time. I’ve spent the last few months getting by routine all perfected and I’d hate to have to move everything around for therapy!

  11. Wow! No wonder you’re fatigued! That’s a whole lotta therapy each week! Your kids are beyond lucky. Hang in there–remember to do the tiny thing, so you don’t get overwhelmed!

    • Good advice–wonder where I’ve heard it before? I know this is just something we have to get through–and honestly, they’ll be preschool age before I know it. It just doesn’t always feel that way!

  12. A longtime reader but I don’t know that I’ve commented. I’m no professional, but I would insist that therapy fatigue is a real thing! I get tired of meeting my own theraputic needs and I only have to step them up to any real frequency for a few months at a time. Seeing your posts about creating routines in your life has re-committed me to the routines I know make my life better, even when that means going to bed when I don’t feel tired. :) Any tips you’ve seen about caregiving burnout or self-care for caregivers might be useful here.
    Sending out a prayer for strength, peace, and rejuvenation for you as you continue to balance and schedule all of these things.

    • Thank you so much! I guess I need to read about caregiver burnout. Honestly, I’ve always been so go-go-go, that this fatigue is a bit of a shock to the system. I’m confused by it.

  13. I would have to agree that therapy fatigue is quite real. I get it too. Em is now 9, and it feels like I have been doing this my whole life…even though it has only been her whole life. I can totally relate to everything in this post. Hopefully, the twins will require a minimal amount of time in therapy overall… not the long haul. I will definitely be praying for you. I imagine this must be overwhelming. You are a wonderful mother though. You blog always inspires. Your boys are very lucky to have you.

    • I do hope they don’t need therapy forever–I suppose it’s hard for me to imagine that they won’t, though. I mean, I guess it’s possible they’ll start catching up at some point. Maybe in preschool? I don’t know. Louie may not need much and August it’s so hard to tell because it all depends on what he’s been eating! Thank you so much for the kind words. They do help.

  14. Every time I read your blog, I am just in awe of your commitment to doing everything possible you can for your kids. I can’t imagine so many appointments…I thought I had my hands full with one when Em had a zillion of them! Your boys are so lucky to have you as their mama.

    I kind of think you are Superwoman.

    • I wish! But I do try to channel her when it’s necessary. Thank you so much for being so kind. I will do this, but it’s nice to know that I’m not alone on the days where I want to lie down and take a nap instead.