Priorities

Not even sure if I’ve mentioned this yet, but I was finally able to get Charlie into a private PT program that has a Lite Gait. I’ve been intrigued by the Lite Gait for over a year and when the spot opened up, I had to take it.

We’ve been working for a couple of weeks–starting slow with standing, kneeling, and even a spin on an adaptive trike.

boy sitting on adaptive tricycle

Seriously, what is this thing?

There’s a little boy who’s about seven and who also has cerebral palsy, that comes for occupational therapy at the same time we’re there for physical therapy. He’s engaging and sweet, he speaks clearly with all the therapists he meets. I was looking at him this afternoon rather closely as his therapist decided to work on trunk strength and I could see that his abilities strength-wise were nowhere near Charlie’s.

And when I went to my mother-in-law’s for dinner later, I was talking about the little boy. I marveled at how much he could do, but was especially amazed by his speech. I mean, he walks with a walker, but the ability to speak! Incredible. It wouldn’t matter if he were in a wheelchair–he can get his thoughts across.

boy crying in a walking contraption

Take away his iPad, and he'll thank you like this.

And so my wheels started spinning. Walking has never been a true goal of mine. Yes, I want Charlie to bear his weight on his legs to assist with picking him up, transfers, and so forth, but the other day when the doctor said for the first time, “Charlie might walk,” well, it wasn’t the moment you would expect. It was fine. I’ve made my peace with the chair and will A-Ok if it lives with us forever.

So why are we in walking practice? This ridiculous I know–we’ve just started!–but is that really where I want to put our energy? our time? our money?

Two weeks ago, the physiatrist handed us a fist-full of prescriptions–he pretty much told me to go after whatever I could. He expressed his belief that Charlie really needs to work on his communication. The next week I spoke to a local speech therapist who is familiar with the iPad and Proloquo to Go, but who said that working on augmentative communication with a child that young could be difficult. A few days later I asked the neurologist and she said he’s not too young and said the best place in the area is one that’s about an hour from my house.

I’m confused. I’m worried. Worried that I’ve lost focus of what I what our true goals on. Worried about changing gears and having it be a colossal waste of time. Worried that this is pre-baby panic. Worried that I could sign him up for this great speech program and then get side-lined by bed rest.

I’ve never been this unsure before. Never been so hesitant to take a step.

I keep waiting for a handbook with all the answers to show up and it’s still not here.

Pregnant woman standing with hand on hip

More people with whom I can mangle the art of parenting.

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Comments

  1. My thoughts? Go for the communication stuff. Like you already know, it’s the stuff that really matters. And personally, I don’t think he’s too young. My boys (a few months younger than Charlie) amaze me everyday with what they know and can do…so i’m sure Charlie would amaze you too (cause I know that boy is smart!).

    My thoughts on the walking thing? Really not the most important thing…it’s the transitions that are most important and will actually give him some independence. For us, yes, Ben is great with his walker and I really do expect him to walk someday, but we constantly work on the transitions…from crawling to sitting (still hard for him), moving from a standing position to sitting, getting in and out of his walker (and soon-to-be wheelchair).

    Plus…communication is something that YOU can work on with him from your bed or couch (or rocking chair with 2 babies on you)!

    • I know, Cary. I feel like somehow I got lured by the cool-factor of the Lite Gait and forgot that I wanted to work on communication.

  2. Oh Katy, I have been there befor! I don’t think any of it is a waste of time! You never know what these kids will do…I can see both sides of it though. I know with the communication it can be hard when they r little it was for Faith. But it can be that way with walking too! The thing I have learned is that when they get to READY developmentally then THAT is the time to go crazy in that area! In the meantime just maintaining general stuff in ALL areas is status quo. At least that has worked for us. Like now with Faith walking…we are all over the PT thing and less so on OT. Idk just some of my experience. I am sure you know that yourself. But don’t give up on him walking…look at Faith! Seven long years….

    • Candace, I do appreciate you thoughts on this subject–you’re done so much with Faith and she has progressed SO MUCH. You are a good reminder that it’s not like we have to stop doing things at any point–he has years of improvement ahead of him.

  3. I listened to my daughter’s school for years and wish I hadn’t. They told me over and over again that she wasn’t ready for a communication device and that she just couldn’t use one. I finally listened to my gut and pursued a device. She has amazed me at how well she is doing and we have only had it for two months. Listen to your gut…

    • I love to hear success stories! I guess I’m the most worried that since this lady doesn’t have high expectations of Charlie, then she might not be able to get the most out of him.

  4. I know what you’re talking about, I have felt the same way about Zak and walking vs. talking. I a person of so many words, I just want Zak to be able to express the way he feels in a way that others will understand.

    I agree, he is not too young to start with that kind of communication. We started with Zak about a year and a half ago (he will be four next month). It has taken a lot of time an frustration but after 6-8 months he started to get it, just a little. We will keep working!

    Good luck with everything. I hope and pray everything works out!

    Renee

    • Renee–I’m not sure if Charlie will ever say words–I really think that maybe that part of his brain is just too damaged. I really think we need to push the augmentative comm because that might be the way he talks for life.

      • come on, katy. he said my name. you heard it.

        • give him time.

        • He did, but in general, he has a lot of trouble convincing sounds to leave his throat–like so much trouble that I wonder if it’s the best method of communication for the little guy. And yes, I think that with time it maybe come more easily, but I would LOVE if he could express himself a little better now.

  5. I sat in on a SLP lecture a few months ago & what I took away from it was it’s never too early to start working on communication. I actually say a 6 month old using switches to communicate. It was shocking, in a good way.
    Try sitting down and coming up with a list of goals you have for Charlie. That may help. (I can’t take credit for this suggestion since my mom had me do it yesterday)

    If you ever get that handbook let me know. I might be able to use it myself.

    • We have done SOME communication with Charlie for ages. I think the real question is whether or not he’s ready to take it past choosing between a few items and actually spontaneously communicating.

  6. learning is best accomplished in an environment that is pleasant. judging by the look on charlie’s face, he ain’t learnin’ nuttin’ in that contraption he’s strapped into!

    • Well, Ev, you know how he can get. He was very upset because we took away the iPad. Didn’t seem to care one bit about the Lite Gait. Just don’t take away his Salt and Pepa!

  7. I am not even pregnant and I am right there with you! I keep thinking very similar things about Emily. Do I get her into extra PT or do I focus on communication? I go back and forth about it so much that I am starting to feel dizzy! Times like this – it would be great if there was a manual!

    • Or maybe a chart of some type? That would let us know which activity we would benefit from the most? Something like that would be nice.

  8. I cannot speak to what you should consider as far as goals. Luckily walking came fairly easy for Anna even if it isn’t just as others do it. Speech on the other hand has been slower. She is still in speech and I expect she will be for years to come. What I can speak to is the whole bedrest issue. I was taken off work at 20 weeks and have been on some sort of bedrest, modified or full, since then. I am now 35 weeks (and being induced on Thursday YAY). I was putting off a lot of things for Anna being afraid also of if I could manage with bedrest or a NICU baby or whatever. A good friend of mine told me to quit putting it off and schedule what I needed to and if we had to reschedule then we would handle that at the time. So I did. I was able to get a lot of things done and it helped to clear my mind and keep that part of my anxiety down. I have had to reschedule some things also but have found that people have been more than willing to do whatever they needed to do to accomodate our situation. I have no idea if any of this makes sense because my thoughts are so scattered but I hope in some way it helps.

    • It does help. There’s no sense in planning for bed rest when it might never happen.

      I am SO EXCITED that you little boy will be here soon!

  9. Katy-
    This will not be the first time that you have to “pick” an issue to work on! That is totally OK to work on one area and put the other one to the side. It has to be the right choice for you and for Charlie. Communication is huge, it does open so many more doors for a child. Think of the time you could save if you could understand his communication better. I would think that the upcoming situation with two new sibling might be a little frustrating at times and what better way to manage that then to have an outlet to communicate.
    That being said, get the help with what you think you’ll have more trouble doing yourself at home. If you think you can motivate him to walk at home than focus on speech at therapy or vice versa. Do the best that you can and Charlie with benefit from any and all of your efforts!
    One more thing.. check in see if you can qualify for in home therapy for Charlie if you go on bed rest. Also look into the local PT/OT school and see if there is a student who, with some training, could come to your house and work for Charlie for a small fee. It is a good learning experience for them and could take some stress off of you taking him to therapy. My second set of twins are almost three and I still only take them to therapy if I absolutely have to, otherwise I just can’t give everyone the attention they need and it’s mass chaos. You look great by the way!!

    • These are some most-excellent ideas. I know the local Catholic schools have service programs–I might see if there’s an interest there.

      At home, well, I think there will be a point where I’m not able to help him with walking any more, but Dad was always real good about working on that with him.

  10. Obviously, no one can speak to what your priorities should be with Charlie’s therapy, but from what I can see, you are on the right track… I think you should make the decision based on what Charlie wants to do. In general, Stephen has always preferred to work on his motor skills, so we’ve pushed that, because let’s face it, it’s hard to get results when your kid just doesn’t WANT to work on something! Now that the motor skills come a little more easily for him, it’s clear that HE now wants to communicate better with everyone. So that’s where we are focusing our energy right now.

    What do you think Charlie wants – mobility or communication? If he is loving his iPad that much (and OMG, I SOOOOO want to get one for Stephen), then maybe this is a good chance to really push communication. I’m certainly not saying that you should drop the new PT clinic – that place looks awesome! I just think its good to take advantage of their interests when we can, KWIM?

    Oh, and your little belly looks AWESOME by the way!

    • He loves his iPad and is excellent at using it to find music–he can actually do multiple steps with ease. I’m just not sure if he would take those same skills and use them for communication.

      I do think that he’s more interested in walking, but I know that he’s sometimes frustrated that he can’t speak.

  11. YOu are looking FABULOUS!!!! love this pic of you!
    Oh the dilemmas… if only to be an ostrich for a week LOL
    Honestly I think if you could work on both do it. Bed rest may not ever be needed so don’t look for it in other words don’t worry about it being a factor unless it happens. And if it is a nagging concern see as Beth suggested if you qualify for at home therapy
    He is at the age now where if he was on the spectrum they would be saying that he should do it all if he can manage it.
    Oh and it is not too early for speech therapy I have seen children not even 2 yet in speech.

    Hugs to you
    and once again you look fab!

    • Yes, I’m just trying to figure out how much I can manage! I’d love to add speech, but I’m worried it might send me over the edge.

  12. Speech is definitely important and so is physical strength. I don’t blame you for feeling that you might be missing an opportunity to get Charlie going on one or the other. My two cents? Keep doing what you can. You’ve done a great job so far of being an advocate for him. I’m really impressed with how far he’s come!

    • Thank you Sarah! Now that Charlie has started school, it doesn’t feel like there are enough hours in the week to do all the things I want to do. Yikes! Reading all these comments has helped me get a little better handle on things.

  13. I am an SLP–it is never too early to work on communication. GO for it, if you are able. T

    • I’m thinking that maybe I’ll just do speech close to home. I’ll have more flexibility that way if I end up on bred rest or something.

  14. LG Education says:

    Hello,
    Thank you for posting the picture of your child in the LiteGait. We love seeing how kids are being treated during their therapy sessions. Let me tell you- your child has great posture in the LiteGait! This is not always the case. He was unhappy- yes, but if you give it some time he will do great. A couple of suggestions- if your goal is walking (with this everything else is practiced- bearing weight through the legs, balance, coordination) then definitely ask them to use LiteGait with a treadmill. Kids that are learning need the fast repetitions, even if it is passive. The harness needs some adjustment too and it will be more comfortable…it should not be in his armpits, it is way too high. They need to bring it lower and use the smallest groin piece. They should also bring the LG down to a lower position- it looks like they have the best device for the pediatric population- it gets tall & small, but they could be using the range a little differently for your child. If you would like us to discuss this with the clinicians at the clinic we would be happy to. We talk to therapists every day about their clinical use- just send a contact name & email or ph number to education@litegait.com or just tell me where he goes for therapy and I am sure they are in our system. Thank you so much for your time. Congratulations on your pregnancy.

    • Thank you so much for leaving this comment here–that is so cool! We will be using the Lite Gait over the treadmill–the therapist was just hesitant to throw too much at him at the same time.

      I will share the rest of your thoughts with our therapist who I am sure will appreciate it.

  15. I’m blaming some of this panic on pregnancy… I’m feeling the same way over here with a few things. We are about to do 12 weeks of private speech therapy, 2x/wk. We have yet to begin but some panic has prompted the newly added therapy. Panic and uncertainly can certainly mess with one’s head when you’re dealing with a full plate already. Charlie is in good hands with you… try to relax.

    • Mo-I’m glad I’m not the only one panicking a little. I guess it’s natural. I can already see that I’ll have a lot more to worry about/focus on once the twins get here. I suppose I’m a little worried that Charlie will fall behind if he’s not getting 100% of my attention.

  16. He looks slightly ready for a Harley Davidson jacket in the first pic!
    And you are looking soooooo cute!! I’m just gonna live vicariously through your pregnancy, ok? I love it! And by the way, I’m thinking one boy and one girl in there.

    • Please feel free to live vacariously through my pregnancy! Maybe I could get you to take a couple of naps for me as well?!?

  17. I completely get you on this. We just got done with an intensive PT session where my head was filled with walking goals {including the lite gait}. Which are great….don’t get me wrong, BUT, like you, I’ve made peace with the chair(s).

    I feel overwhelmed that I am not working with her enough everyday. I bought a wedge and a kaye bench on impulse after the therapy. The bench is going back. I haven’t been great with homeschool stuff since the therapy arrived. I think my brain can only handle a few categories at a time. With kids like Caleigh and Charlie there is so much that can be important. How on earth do we pick what is the most important?

    Ok, so no help here. Just a “I know exactly how you feel” comment.

    • You know, Holly, you actually make a pretty good point, I mean, maybe the answer isn’t to try to do everything at once, but rather to select times to work feverishly on one thing and then take a break and work on something else.

  18. O has been in speech since he was 9 months old. It’s not all just saying words. O will be non-verbal we know this, he lacks the gene that promotes expressive speech, but he is lenring to communicate in other ways and they are starting with pictures to get us going on PECS when he’s ready and eventually we will get a comm device for him.

    • I used to think pictures would work with Charlie, but lately we’ve been letting him pick out songs on the iPad by album color and he has some very specific taste–so he must be using the pictures to guide him.

  19. Two things…
    First – when you get your copy of that parenting manual can you xerox a copy for me? I could sure use it.
    Second – don’t forget that a lot of this stuff is neurologically linked. Most kids learn to walk before they learn to talk. I’m not sure that it has to be in that order, but mobility lends motivation to communication. That’s what I observed with my twins. It reminds me of when my daughter was first starting to gain words – she would talk more when I had her in her baby swing. Somehow the vestibular input got her verbal skills activated.
    No matter what you are doing, you know you are carefully choosing the best you can do for Charlie, and that’s the most important thing.

    • I’ve heard this before. I guess I just wonder if there’s a moment where a child is past that. Like, developmentally he should be able to do both, but he can’t do either. I’d never heard that about the vestibular and speech, but I find it very interesting.

  20. Pregnancy hormones do strange things to our brains, don’t they?

    I’d been feeling a bit guilty for cutting back on therapy…but what we had wasn’t working. My little guy has a really bad attitude about people who don’t have high hopes for them…he lives up (or down) to their expectations – so anyone who wasn’t willing to hold him to a higher standard just needed to go.

    Given that we had a therapist want to start with a communication device at a year old, I think you should look for one who’s not so gloomy. We turned her down at the time (for numerous reasons), but we’ve recently debated whether it would be good to try it now….our current SLP is awesome, and says, “well, he’s signing, he’s instigating, he’s making sounds, all very good progress….let’s let it be for now, and see where he is this summer.”

    • I will cut out anyone that doesn’t have high hopes for Charlie–he doesn’t need to live like this. And I do think that’s part of my problem–I don’t want to work with someone who may already be feeling like it’s “too much.” Why spend the time and money?

  21. Love your caption on your baby belly photo. You crack me up!

    You know I know nothing about Charlie’s specific needs but I have to say, prioritizing is on the mind of all of us parents, no matter our situation, I’ll pray you can find some clarity, while I keep wishing I had a handbook too… 😉

    • Oh, Elaine, you make a most-excellent point! I sometimes find myself talking to someone who’s priorities are completely different than mine (usually because the child in question doesn’t have special needs) and I have trouble wrapping my brain around their dilemma. We’re all making choices even if some are different than others.