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Willa
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| Posted: April 28 2005 at 8:46pm | IP Logged
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My son is almost 6 -- developmentally and physically delayed after a stroke in infancy. He receives speech, occupational, and physical therapy. I'm sure many of you with special blessings receive a range of special services as well.
Now most of these therapy appointments are for about an hour a week and then the therapist will recommend some activities to continue to do with him at home. My problem: even a couple of suggested activities per therapist adds up to quite a workload per week, and this isn't even counting his homeschooling (I am doing informal preschool, basically unschooling, with him) and his medical appointments and medicines, etc.
I am wondering how any of you have worked these therapy activities into your busy days, if you keep a log or anything else that helps you organize the ideas (honestly, often I forget the therapy suggestions until the next session!) and how you keep track of results over time for various therapies. Do your older children, if you have any, help you work on the therapy goals? Does this make sense? Any comments or experiences would be most welcome 
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Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
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Courtney
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| Posted: April 28 2005 at 9:49pm | IP Logged
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Hi, Willa. I haven't had the experience of doing therapy at home with my kids, but I was a speech pathologist before I had kids. Have you asked the speech therapist to just give you a printed list of various activities/ideas? I know when I was working I didn't have kids yet and sometimes would forget that my clients had many other things going on in their lives. However, I would've been more than happy to give out ideas on paper to parents. If you had a list of simple activities you could just pick one each week and try to incorporate it. Also, the therapists often have logs/forms for keeping track of progress. You could ask him/her to share one of these with you for home use. You may already be doing this but thought I'd throw in my 2 cents.
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Courtney in Texas
Wife to Mike since 3/94 
Mom to Candace 10/97,Christopher 4/00 and Connor 11/11
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Lissa
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| Posted: April 28 2005 at 10:29pm | IP Logged
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Oh no, Willa, I don't know whether to laugh or cry! I have been feeling overwhelmed with the amount of therapy homework we have for Stevie (PT, OT, and speech/hearing therapy, which at this point is primarily focused on sign language and listening discrimination) and was actually thinking of writing to you for advice! Juggling the various therapies and then all the different doctors he sees, I sometimes feel like I'm walking a bunch of big dogs all pulling in different directions. I worry that one of them will slip away from me and I won't even notice....
Yesterday we had Steve's annual Early Intervention review and I told the therapists that my main concern is prioritizing the homework. I need to know what exercises it is VITAL that we do every day, and what exercises it would be great if we managed to squeeze in a couple of times a week...that sort of thing. I'm afraid of letting something important slip through the cracks.
My girls do help a lot with Stevie's speech/hearing stuff (lots of singing games, animal sound games, etc, plus the signing) but not the gross & fine motor stuff so much.
Your boy is older and your situation is different...I don't have any wise advice (obviously, since I was going to ask you for some!) but I certainly sympathize. Keeping a log of results is a really good idea. So far I've just been posting each week's therapy notes on the fridge (where they put a lump in my stomach every time I walk past, LOL). I keep a notebook to log his appts and insurance battles, but I hadn't thought of using it to track progress in the therapies. That's a great thought.
Lissa
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Willa
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| Posted: April 29 2005 at 2:17am | IP Logged
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Courtney, Thanks for the ideas! No, I wasn't already doing those things and that is exactly the kind of advice I was looking for.
Lissa, that's funny about our shared problem. I have to admit I just haven't dealt with it until now. Yes, those are the questions I have learned to ask when they recommend something -- how important are the activities comparatively? would a similar activity work as well? is once a day OK, or once a week? do you want us to continue the activity you suggested last time as well, or does this new one replace it? Should I push it even if he doesn't like it? that kind of thing.
Part of my problem is the lack of integration -- which translates into disintegration, which isn't quite right but sometimes it feels close  I am sort of a big picture type who likes to see the picture on the box before putting together the puzzle. When we are starting from the other end -- a speech bit here, a occupational bit here -- it's hard for me to get fully behind the program. It "feels" to me like why I took my kids out of school way back a long time ago. I sure can relate to walking guiltily past the list on the fridge.
I often wonder how this "bits and pieces" approach feels from Aidan's end, especially as he gets older and more aware. Though having a little sibling is helping with this, since Paddy wants to do everything Aidan does and is consequently providing lots of support and reinforcement without knowing it!
I really value the therapy and the wisdom and compassion of our therapists, and trust the soundness of their advice. At the same time, I want to preserve my sense of my ability to work with my whole sense of what my son is like, not just bits and pieces of his "issues." Sometimes these two parts seem to collide and it's hard to know what should come first in my priority list. Either way, I end up with a bit of ambivalence and by the way, it's sort of a relief just to acknowledge that in writing here!
I think there is not an easy solution to this so I am not necessarily looking for advice, though any would be welcome, just sympathy  . Maybe if I took Courtney's idea of having the therapists write out sheets, and then asked his other therapists to look at them and integrate with their ideas, that would be a step towards streamlining? Would that work, possibly, or make things too hard for the therapists who of course have their workloads as well?
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Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
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Willa
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Lissa, I really like that "big dogs on a leash" analogy! Yes, I feel that way too, often, especially with the therapy PLUS the medical stuff! So easy to feel one of those big dogs will make a run for it! But if it's any help, somehow Aidan has survived and thrived so far, even with all our little inevitable lapses! I do think a loving family and lots of affection and attention pays big dividends and the therapists and nurses have often said as much as well
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Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
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Lynn - Maree
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Willa I hope our experience can help some what. Our daughter Amiee is 9 1/2 and has Down Syndrome when she was about 4 I remember feeling frustrated and confussed with the amount of different thearapy and Dr appointment we were attending, as well as home schooling, being pregnant and just trying to to do all the every day mother wife sort of stuff. we really had to reprioritize our activities. Not only looking at what was essential for Amiee but also the needs of our other children as well as our needs as a family. I was rapidly burning out and my other children were sick of doing school in hospital coridors. What we decided to to do was to look at Amiee's overall development and prayfully decide where her area of most need was at that time. we would than book a 6 to 10 week block with that therapist be it speach, OT or physio. WE had an exersise book for eack theapy and asked the therapist to fill it with ideas for a home programe that we could implement at home once that particular block of therapy was finished. When it comes down to it the most beneficial thing for Amiee is to have a loving suportive family and I believe her brothers and sisters have been the most incredible therapists and encouragers she could ever have . She is so much more willing to try new things just because her siblings are doing them then if a therapist is tring to get her to it. While these therapys have their place, I think we some time see them as being to important and we throw the baby out with the bath water and of coarse there is that incredible guilt that if we don't try every suggestion, every exercise, every therapy we are not being a good and loving parent and in some way letting our child down. As parents of special needs children we are here for the long haul and in many instantances our children won't be leading independent lives any time soon, it is us, their family that will be there long after the therapists have moved on and as such we have tried to make Amiee's developemental goals a family commitment enlisting the help of her brothers and sisters where ever we can.
hope this has been of some help.
Lynn
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momtomany
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Lynn - Maree wrote:
comes down to it the most beneficial thing for Amiee is to have a loving suportive family and I believe her brothers and sisters have been the most incredible therapists and encouragers she could ever have . She is so much more willing to try new things just because her siblings are doing them then if a therapist is tring to get her to it. While these therapys have their place, I think we some time see them as being to important and we throw the baby out with the bath water and of coarse there is that incredible guilt that if we don't try every suggestion, every exercise, every therapy we are not being a good and loving parent and in some way letting our child down. As parents of special needs children we are here for the long haul and in many instantances our children won't be leading independent lives any time soon, it is us, their family that will be there long after the therapists have moved on and as such we have tried to make Amiee's developemental goals a family commitment enlisting the help of her brothers and sisters where ever we can.
hope this has been of some help.
Lynn |
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Lynn, I totally agree with you. Having lots of loving siblings has been the BEST thing for John even though we do some other therapies.
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Mary Ann in PA
wife to MIchael, mom to Elizabeth, Becca, Tim, Peter, Andrew, Sarah, Matthew, John, Leah and Joseph
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Willa
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Lynn - Maree wrote:
| She is so much more willing to try new things just because her siblings are doing them then if a therapist is tring to get her to it. While these therapys have their place, I think we some time see them as being to important and we throw the baby out with the bath water and of coarse there is that incredible guilt that if we don't try every suggestion, every exercise, every therapy we are not being a good and loving parent and in some way letting our child down. |
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Lynn-Maree,
What a lot of wisdom there was in your post. I could hardly find a section to quote since I was nodding my head through all of it.
How true about the guilt about *not* doing all these interventions while not recognizing quite so easily how much benefit the delayed child gets out of the home environment that we've worked hard and made sacrifices to provide. Reminds me a bit of the SAHM's dilemma, where the "at-home" work doesn't seem as valued and rewarded by society as paid work.
I like the idea of "blocks" of therapy -- maybe I could adapt it to our situation by putting special focus on the kind of therapy I think he is benefitting from most at a given time, and spending less time and energy on the things that don't seem quite as high priority.
Thanks!
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AMDG
Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
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4Real Forums : Special Blessings
Topic: Multiple Therapies
