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05/31/2012

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Oh Christy I wish I knew. Our path is not your path but I too find myself in a valley of what ifs with our oldest child right now where we worry that if we were somewhere else or doing something else he would be better. But what if we moved everything and everyone and it was the same or worse? And truly I am the one who needs to change my perspective but why is that so hard?? Anyway,let us trust in the journey and know that you are doing everything you can to guide him on his life's path and that by walking beside him you will find your way. Hugs.

My nephew Max finally got potty trained somewhere in the last couple of years--and he just turned 12. He was finally officially diagnosed as having fetal alcohol syndrome (my sister adopted him from Russia when he was 2 1/2) in the last year or so, because as he got older he'd need the labels of diagnoses to get access to services. He never cared about the pull-up either, and for him a lot of it apparently was an inability to process the signals from his body.

So there's at least one challenged older kid out there who eventually got out of diapers, long after age 8. =)

Aside from seeing your and Nick's posts on Facebook, I think of you two and Elias often, especially as I watch my nephew get older and the challenges with him change and shift over time.

Enjoy your summer break!!

You know, Christy, for what it's worth, I think it is amazing that Elias noticed your interaction with Nick, realized it had to do with him and his recent question, AND cared enough to ask.
As for that holy grail--we all ask ourselves whether we are doing enough. I try to be a believer in the idea of the good-enough mom. I hope I am good enough! And while I understand (I try to anyway) that you have a whole different set of parameters you are working with with Elias being not typical in most ways and potentially needing all kids of support offered in India and elsewhere, I see that you are doing plenty. Does life have to be a round of physical therapy exercises or can it be a walk through the woods? Does it have to be a therapist or can it be teachable moments during family life? I guess it isn't EITHER/OR (as I am painting) but I believe you are doing lots, and building a family that works for all for of you.

Don't necessarily believe what the experts have to say about the potty-training cut-off age. In the past year I know of one friend's kid who learned to ride a bike at 14yrs and another's kid who stood up indepedently at 8yrs. Not many books talk about that.

Maybe in Alaska, the therapy resources are limited but he also has so much more! He has a love of the outdoors. All that walking in the snow strengthens him more than any PT therapy, I bet. The salmon, that is popular there, is very healthy for him.

In your research have you come upon the Anat Baniel Method? Have no idea if there would be practitioners in your area, but I am going to be trying it soon with my son who is 13 months, born at 26 weeks with grade IV IVH.

you are doing enough. you ARE enough. and asking those questions of yourself is what makes you exceptional. one step at a time.

Christy, I'm curious.. have you taken him to see a urologist and have they done urodynamics on him to evaluate how his bladder fills and empties, whether it is a reflex emptying? What does the urologist think is causing the incontience? Or is there a cause? could it be OAB?

I'm with Danielle in Zurich: I thought it was a positive story. To "talk" with our eyes is funny -- wouldn't most young kids find that a funny expression?

And as for where his is or where he could be right now, I cringe to think where he would be if he hadn't had you and Nick in his corner. Your love is obvious and has made a world of difference to him and his development.

Kate, when I walk with him instead of running ahead to point out all the cracks in the sidewalk, life is always better. The What Ifs kill me every time.

Candice, thank you for these stories and thank you also for sharing yours. Whenever I meet young widows, I think of you. Your willingness to truly grieve matters. And your writing is beautiful.


Danielle, I laughed along with Elias when he thought we were fooling him about talking with our eyes. And yes it was a positive moment for me too. I'm often amazed that his lack of vision still surprises me because I forget that he can't see. And yet it is his lack of being able to read body language that cuts him off from others and cuts me to the core. Social communication. I just wish he got it. I don't know but I hear ya. And another side of knows we are doing right by him. Tonight we biked around the block and did wheelies in flower shop parking lot. Elias pedaling his own recumbent bike. Steering on his own. Chasing his sister. What better therapy is there?


Lee, we eat smoked salmon daily. Yes! We are lucky there. Thank you, too, for sharing these stories. You give me hope. Which I always need when I'm stuck in the valley.


Micheala, I'd love to hear more about your program after you experience it. I read about the guy she learned from a few years back and am curious to know what you think. My email is: [email protected]. Thanks for reminding me about this method.

Flem, love you my old friend (and thank you for the clothes)and the reminder here. I'll be in touch soon!

Rob, we went to a urologist 2 or 3 years ago and were suppose to see him again in a year but with all the docs and school we jut never rescheduled. Its on my list to make another appointment. he had mentioned that test the last time we saw him as a possible future step. What is OAB?

Erin, thank you for these words.

Thanks all for your readership, knowing your out there caring about my family, helps me more than you know.

Christy, OAB is known as overactive bladder, or urge incontience.. not uncommon in nerve related disorders such as CP and Autism. From what i know, CP affects different people in different ways. Some, continence is not greatly affected, in others, it is. It all depends on what part of the brain is affected. Autism could play a part as well. There are actully differnt subtypes of incontinence: stress, urge, overflow, and mixed.. Im not a urologist, so i dont know what your case is. Urodynamics is not the most pleasant test, but it tells the urologist a lot as far as how the bladder works. I went through 2 urodynamic studies and 2 cytoscopies until we finally figured out that the reason i was leaking is that i was retaining urine and not emptying properly leaving residual. Part of the cause was due to the medication i was on, and part of it was i didnt know how to relax my pelvic muscles properly. From what you wrote about Elias, its possible that it is OAB or neurogenic bladder since people with that particular affection seem to release urine without being aware of it. Does he have an intact spinal cord and nerve endings? if so, it may be a matter of muslces..again, im not a doctor so i dont know all the answers. One thing i do know is theres a lot of causes of incontinence, and depending on the cause, there is treatment available. Has the urologist recommended a cathing regimen? thats common for those with both CP and spina bifida Perhaps it could be tethered cord? Again i dont know.. if getting Elais dry and clean is a priority, seeing the urologist would certianly help. I know how hard it can be to keep appointments; in my case one uro was a good 2 hour drive from me, and the one who was actually the most help, was a good 5 hours away at U of M. I cant say enough good things about the U of M ppl. anyway, hope this helps!

Is this the study you read?

Paediatr Nurs. 2006 May;18(4):23-6.
Levels of continence in children with cerebral palsy.
Singh BK, Masey H, Morton R.
Source
Derbyshire Children's Hospital, Derby.
Abstract
Little is known about the levels of continence in children with cerebral palsy and what factors affect this. This study was conducted to determine levels of urine and stool continence in children with cerebral palsy in relation to their learning disability (LD) and mobility. The aim was to enable us to predict level of continence that can be achieved for these children with a given level of learning disability and mobility. Data were obtained from medical notes and by telephone interview on mobility, degree of learning disability and urine and stool continence of 55 children in Southern Derbyshire. Most of the children who have nil to moderate disabilities in learning and mobility were able to achieve a decent level of continence around a median age of three years. Therefore, their toilet training should be started at the usual age with ongoing support from parents/carers. In children with severe learning disability and severe immobility, the probability of continence is very slim after the age of eight years. After this age it may be better to divert resources to other aspects of care, for example nutrition and physiotherapy, to improve their quality of life.
PMID: 16719038 [PubMed - indexed for MEDLINE]

If it is, you should know that A this is just an abstract which is a summary of this article, and B the contention of the likelyhood of acheiving continence by the age of 8 could be based soley on their study population, which i believe was 55. In order to get a study with meaningful applicable results that one can generalize, then youd need a bigger sample. I would be intreested to read the whole article to see where they drew the 8 year being the threshold from contince from, whether it was just from their own data, or they drew from other sources. I know that its hard to generalize something off one study, because i had to do painstaking research myself to earn my sociology degree. That being said, the older one gets the harder it is to overcome bladder problems. But that does NOT mean one should just give up and use diapers, because that leads to skin breakdown and rash problems. Even if your son gets to the pont where he makes it to the toilet some of the time, and still has to wear a pullup the rest of the time, so much te beter, beacause that is one less wet or messy diaper/pullup to change and better skin intergrity.

I guess what I'm trying to say is dont let one study discourage you, because other researches may have had different results. In my senior project seminar, we were taught to assemble a compendium of different articles and look at the merits and flaws of each. Im not saying you havent done your research because im sure you have, its just it may help to look for where the articles agree on something that applies to your son, and then look at that as something that MAY be the case. Its hard to generalize about medical stuff, because every case is different. In case you didnt figure out, doctors dont always know everything about every case. I was actually told by my urololgist i may have to live with my problem. well, i kept chipping at it and found a solution. He was barking up the wrong tree, assuming it was OAB and had me on Detrol vesicare etc, when it was actually the other way around. I didnt have a problem keeping it in i had a problem of letting it go, which is why detrol made it worse. It wasnt until i saw the uro at U of M that we figured out that it was my meds and not relaxing was the issue.. and flurourodynamics, a form of urodynamics was the test that found that out.

Hope this helps,

Rob

Since I'm a speech-language pathologist in junior high, most of the students I see are working on language rather than speech and many of them on social language. I also run lunch bunch groups at both of my schools where I teach social skills lessons once a week and help facilitate interactions between the students. The lunch bunches allow me to help out students who don't actually qualify for speech services. Does your school have an SLP? She may be a great resource for Elias in learning about social skills.

Rob, Yes that was the same study and I didn't read the whole article. Thank you for all your helpful info. I will schedule an appointment for Elias so I can learn more.

Lisa, Elias does have an SLP who works with him in small groups to support social skills. Thanks for the work that you do for kids!

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