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Feeling down and just need to vent
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Posted 09 December 2010 - 04:19 PM
Feeling like crap right now and just need to let it out. This seems like the best place to do it.
DS1 has Williams Syndrome, so he is developmentally delayed. I just got off the phone with his physio who did an assessment of his gross motor skills today while he was at Early Intervention. She said that he was in the 63rd percentile for ball skills (which was quite a surprise) and the 5th percentile for balance (which wasn't).
That's not what I'm feeling down about, though. She basically went on to tell me off for not having any physio goals on his plan for the last couple of years. Once he started walking, our goals mostly focussed on speech and fine motor skills because they are the areas in which is has the least function. He can now walk, run, ride a bike, throw a ball, climb, etc. As far as I am concerned (being the completely uncoordinated, non-sporty person that I am), his gross motor skills were functional enough for us to focus on other areas.
I would have been happy to have physio goals in there, but she was never involved in the goal planning. I know there is the whole "family centred" thing going on, but expecting parents to come up with therapy goals on their own is not fair. Once he walked, I really didn't know where to go from there so we mainly set speech and OT goals because they are the ones who were setting the goals with us. I really needed guidance from a professional. He is my first child. I had no idea what we should be working towards, but apparently because I didn't come up with any gross motor goals we shouldn't have been getting any physio support at all
Now I just feel like I've been chastised like a child and that I've let DS1 down. I'm trying to do my best for him but apparently it's not good enough. Trying not to feel sorry for myself, but sometimes being the "special parent who was given a special child" ( ) sucks.
Posted 09 December 2010 - 04:30 PM
I am really sorry. I can totally relate to the feeling of being overwhelmed with needs to address and focusing on those that seem most pressing. That means that other things can go by the wayside temporarily. I'm sorry that your physio made you feel like crap rather than proactively helping you establish goals & means for achieving them -- that is HER job as a professional.
You sound like a great mom & it also sounds like your son has made some fantastic strides. I'm p*ssed off at that woman for making you feel as if you aren't doing enough. Argh!
FWIW, I, too, loathe that "special parents are given special children" line. It's just a crap shoot in terms of who gets asked to join our "club."
Hope you are feeling better soon.
Edited by baddmammajamma, 09 December 2010 - 04:31 PM.
Posted 09 December 2010 - 04:30 PM
Totally peeves me when we are expected to come up with their goals. How are we supposed to know, we didn't go to uni and spend years working in the field. We were dropped from physio support after DS started walking too.
Posted 09 December 2010 - 04:38 PM
Tell her to get knotted!
Maybe she was projecting a little of her own guilt, that she hadn't got involved earlier to help set gross motor goals and she should have. As you say, as long as he can run, jump etc, then that's probably not as important as the fine motor and social skills for schooling.
Posted 09 December 2010 - 04:45 PM
mamma2miracles has it right. After years and years of it, I just don't allow them to try and guilt trip me like that. I am only one person, there are only so many hours in the day and I do what I can when I can. This means ::duh:: that sometimes things get left behind.
And when every HCP thinks their goals are the most important I just want to have a bex and a little liedown. Esp when said HCP has neglected to tell me what the goals were .
Posted 09 December 2010 - 05:10 PM
Thank you so much. I knew you guys would get it. I've spoken to my Mum and she made me feel much better too. She also gets it. My 22 yr old brother has CP and an II, so she understands all too well what this is like.
Glad I'm not the only one who hates setting therapy goals. The worst part is that apparently the goals I've been setting have been wrong anyway!
Posted 09 December 2010 - 05:43 PM
My DD started early intervention at the age of 6 months. Our very first physio goal was to get her crawling. Each time we had a team meeting we had to set a goal, and each time I said "to get her crawling", and at the age of 5 when she was ready for school we still were not able to meet our very first goal.
Long term goals can be very daunting when there are so many things our children can't even achieve in the short term.
Don't be hard on yourself, there is only so many hours in the day and very few miracle makers in this world I have found.
Posted 09 December 2010 - 05:49 PM
HairyMclary, I want to vent too on your behalf as this has happened to me too. I totally agree with prioritising and I think all credit to you for doing that. My son has terrible balance and co-ordination and I am positive I could spend every moment of every day trying to improve that and he would still falll off his 3 wheeled scooter. As a family we made the call to drop a therapist working on gross motor skills and just integrate it where we can at home on trampolines and so forth. I know others might disagree but I think speech and fine motor are far more important (and social for the ASD crowd). There are only so many hours in the day and your boy actually sounds co-ordinated and able. And gross motor is integrated far more into daily living activities than other activities. And most people don't do sport for a living!
I also find that each individual therapist sees their area of expertise as the most important. An integrated approach is great, but I know that I could spend hours and hours every week to try and get my 4 year old to ride a bike or teach him to write his name when he loves writing. You can guess which one we chose.
Yes, including gross motor is important but it is easier to do yourself than some of the other tasks.
You have done really well and he is brilliant being above average for ball skills - way to go!
As a family we prioritise what is most important for our son and then try and integrate the other bits we feel we can do more easily ourselves - like go to parks with difficult climbing equipment etc.
Posted 09 December 2010 - 06:20 PM
Progeny - Thank you so much for that. That's exactly how I see it too. I know it sounds bad, but I'm not a sporty person. The fact that he isn't terribly coordinated isn't of huge concern to me. She said that it will be a problem once he starts school because the other children will tease him about it, but I can assure you that I have seen him interact with his peers and they notice his language problems way before they notice his clumsiness. It's not his gross motor skills that are going to hold him back in life. I'd much rather focus on his language/fine motor/academic skills at this stage.
The ball skills are a bit baffling. He certainly didn't get them from me!
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