Processing some stuff

[Hawthorne]

Yesterday was Lily's second meeting with her psychologist. He met with me for a couple of minutes prior to bringing her in; he asked if there were any changes or anything I wanted to talk about. Last visit I had loaned him the book I ordered on Amazon about toilet training kids with Autism (I'll look for the exact title in a minute here), so we talked about that. He thought it was so excellent that he took my copy out to his wife (the receptionist) to ask her to order a copy for himself.

Here's what I keep turning over in my mind. When we first met with him, he said that he hadn't ever heard of anything quite like this (and he said that he and a colleague of his became known as the "shit doctors"). Yesterday, he said that he's stumped, and that I seem to have a firmer grasp on what's going on than he does. Also, that none of the Autistic kids he's met with have struggled like this in the toilet learning department.

First, I love this guy, I really do and would not hesitate to send Lily to see him regularly (right now she's only seeing him for evaluation purposes), if ever needed. But those words are not comforting to me at all. When I made this appointment I felt in my very soul that this was right, we are on the right path, this guy would have The Answer. When I met him, I felt even more at peace that we were reaching the end of feeling LOST, and that this was a new beginning.

I'm tired of hearing professionals tell me they're bewildered. Damn it, I'm tired of it!

Tony said that it doesn't sound like a good sign, but I assured him that we will get something to work with from this psychologist. I know that we will get *something* here. When I spoke to his wife and told her that Lily's OT isn't covered for ADD with our current insurance she said, "oh well than we know to stay away from that diagnosis". I KNOW that they will be completely honest with me AND give me something that will help Lily get the services she needs.
But WHY?? can't we have... "Autism" or whatever it IS, cut and dry, no question about it.

So Lily meets with him one more time, and then Tony and I will meet together again for a game plan.

While I'm at it, let me add that Lily enjoys going so much that for the week and a half between the last appointment and yesterdays, she asked repeatedly when she got to go back. She is SO at home there, he has the *coolest* pond with goldfish and tree stumps that you step out onto out IN the water, tons of dragonflies, a garden FULL of flowers and a row of strawberries, two horses, a cat, and a woodpile full of chipmunks. I feel *guilty* for not living in the country when I take the kids there, especially because of Lily. She is just made to be in nature.

Ok, brain dump over.

[Sue]

Yesterday was Lily's second meeting with her psychologist. He met with me for a couple of minutes prior to bringing her in; he asked if there were any changes or anything I wanted to talk about. Last visit I had loaned him the book I ordered on Amazon about toilet training kids with Autism (I'll look for the exact title in a minute here), so we talked about that. He thought it was so excellent that he took my copy out to his wife (the receptionist) to ask her to order a copy for himself.

Here's what I keep turning over in my mind. When we first met with him, he said that he hadn't ever heard of anything quite like this (and he said that he and a colleague of his became known as the "shit doctors"). Yesterday, he said that he's stumped, and that I seem to have a firmer grasp on what's going on than he does. Also, that none of the Autistic kids he's met with have struggled like this in the toilet learning department.

First, I love this guy, I really do and would not hesitate to send Lily to see him regularly (right now she's only seeing him for evaluation purposes), if ever needed. But those words are not comforting to me at all. When I made this appointment I felt in my very soul that this was right, we are on the right path, this guy would have The Answer. When I met him, I felt even more at peace that we were reaching the end of feeling LOST, and that this was a new beginning.

I'm tired of hearing professionals tell me they're bewildered. Damn it, I'm tired of it!

Tony said that it doesn't sound like a good sign, but I assured him that we will get something to work with from this psychologist. I know that we will get *something* here. When I spoke to his wife and told her that Lily's OT isn't covered for ADD with our current insurance she said, "oh well than we know to stay away from that diagnosis". I KNOW that they will be completely honest with me AND give me something that will help Lily get the services she needs.
But WHY?? can't we have... "Autism" or whatever it IS, cut and dry, no question about it.

So Lily meets with him one more time, and then Tony and I will meet together again for a game plan.

While I'm at it, let me add that Lily enjoys going so much that for the week and a half between the last appointment and yesterdays, she asked repeatedly when she got to go back. She is SO at home there, he has the *coolest* pond with goldfish and tree stumps that you step out onto out IN the water, tons of dragonflies, a garden FULL of flowers and a row of strawberries, two horses, a cat, and a woodpile full of chipmunks. I feel *guilty* for not living in the country when I take the kids there, especially because of Lily. She is just made to be in nature.

Ok, brain dump over.

(((Rebecca and Lily)))) Unfortunately Autism and the sudden rise in DXs doesn't seem to have caught up with the professionals. I am sure they *know* it's on the rise, and they are learning what they can, but until they start treating them more and more in practice, they are going to see a lot of "OH I've never seen this before." It's probably not a comfort to you, but someone will come up behind Lily in that practice that is very similar, and to that family, he can say I know what's going on. I think unless you keep looking around, you just have to trust that he is qualified to learn as he goes along.

And for you and Lily, your best bet would be to network with parents who have children who are like Lily. One of them may have the same exact issue, and have ideas or insights for you. Oh and don't forget, keep getting your (((HUGS))), positive thoughts, and "GOOD MOM!" praise from those of us who care, but can't offer real advice.

[Hawthorne]

(((Rebecca and Lily)))) Unfortunately Autism and the sudden rise in DXs doesn't seem to have caught up with the professionals. I am sure they *know* it's on the rise, and they are learning what they can, but until they start treating them more and more in practice, they are going to see a lot of "OH I've never seen this before." It's probably not a comfort to you, but someone will come up behind Lily in that practice that is very similar, and to that family, he can say I know what's going on. I think unless you keep looking around, you just have to trust that he is qualified to learn as he goes along.

And for you and Lily, your best bet would be to network with parents who have children who are like Lily. One of them may have the same exact issue, and have ideas or insights for you. Oh and don't forget, keep getting your (((HUGS))), positive thoughts, and "GOOD MOM!" praise from those of us who care, but can't offer real advice.

:hug2: I do trust him very much. That's what I was trying to get across, I really am happy with where we are... it's just so unsettling to feel like there may not be an easy answer.
I should find a support group, I know there is one locally, but haven't ever felt like I should join because we don't know what is going on. LOL

[Sue]

I should find a support group, I know there is one locally, but haven't ever felt like I should join because we don't know what is going on. LOL

You can still join without a DX. And I promise they won't kick you out if you get a different one. ;-) My friend joined an autism support group way before her son got his Aspergers DX, and even before she thought it was Aspergers (She was thinking NVLDs) Her son was just like their kids, and that was all that mattered. They helped her so much with support and resources.

I sort of equate it to going to LLL as soon as you find out you are pregnant with your first child. YOu have no way of knowing what will happen in those months of pregnancy or after you have the baby. But you know the path you are on. You can still get support from people LIKE you. Does that make sense?

[Rosemary]

{{{Rebecca}}} My best friend is in similar shoes.

In her heart, she feels her daughter is autistic. She clearly has a lot of issues, but no one has ever dx'd her and has always said no, she does this, or no, it can't be because of something else. After years and years of going to doctors, having her evaluated, she just decided that she is who she is, and she just needs help. She gets a lot of help in school and at home, and my friend has hooked up with the Sped parent's group at school and is very involved. She has a network of friends who have children with varying disabilities. Because of her dd's issues plus a low IQ, she does qualify for all the support and help in school, so she pretty much is at the point that a diagnosis at this point probably wouldn't change anything. She needs help, she gets help, no one can really tell her why some things are the way they are. It is frustrating, but in her case, it just doesn't matter anymore.

I do understand though, as much as I can without going through it myself. She has spent years hoping that one doctor will say, Bingo, this is it, and from there they could work and make it better. It has never been that easy for them, but it does seem, she is now 12, that things are getting slightly better and easier.

{{{Rebecca and Lily}}}

[gfrach]

Yes, I totally agree! Also, many people see ADD as being on the autism spectrum, so they won't kick you out if you "just" have an ADD dx, especially since there is obviously more going on with Lily.

It's really amazingly helpful to talk to people in person who have similar struggles.

Hugs!

[kellydog]

There is a really good one that is geared just to families in Indiana. It has been such a great resource to myself and other families I know. Here is the link http://groups.yahoo.com/group/INF2FParents/ . You can ask questions of other parents, get info on good local resources, etc. It isn't a whiney why-my-kid type of a place, but very supportive and good at coming up with solutions. I have it set on digest mode and only get 1, maybe 2, e-mails a day. It's not at all overwhelming. That might be a good way to get some BTDT input without having to call a million different people.

[Bickery]

(((Rebecca)))

Does it help that you've amused me by putting "processing things" in a post that talks about poop?

I'm sorry that professionals are letting you down. AFOG -- another freaking opportunity for growth (or substitute your own f word -- maybe fabulous!)

[shannon]

(((((Rebecca)))))

Mamas know. I agree with Sue and Kelly that seeking out a support group, either IRL or online, could help YOU a lot right now.

As for the bewilderment over the bowel incontinence, has it ever been suggested that perhaps it's an ASD PLUS something else? Does Lily have some other structural reason why she'd be unable to feel the appropriate warning sensations those with healthy bowels feel before they release? Some individuals with sub-clinical cerebral palsy may have bowel muscle control issues, as do some with minor spina bifida. It may also just be a profound sensory integration dysfunction going on. Does she have trouble with swallowing? Is she hyposensitive in any other areas? Have any of the professionals she's seen even suggested a medical cause for this?

My J is also made to be in nature, too. I really wish I could provide that for him and still be able to work. *sigh*

[mirage1]

How refreshingly nice to have a doctor admit to being bemused about a symptom, rather than trying to tell you all about what s/he's certain it is, regardless of your knowledge or experience!

I do wish it could be simpler for you and Lily, though.

[Brenda]

{{{Rebecca}}} I too wish you could have a cut and dry diagnosis, something simple to deal with, an answer. I am sorry that you have had to struggle so much with your wonderful Lily.

Thinking of you both.

[alottatea]

((((Rebecca and Lily)))) That's so frustrating. I hope you can find some answers at some point. You're both in my thoughts.

[anna v]

Bowel issues are common in kids with ASD. If he's known as the shit doctor, I find it surprising that he hasn't come across other kids with issues. My gastro deals with a lot of them.

That said, it's really common to be bewildered about management ;).

Has she been thoroughly checked out for physical issues? I spent a few too many years with doctors and professionals assuming it was behavioural when in fact it is physical for both my boys.

[Jill]

:hug2: I do trust him very much. That's what I was trying to get across, I really am happy with where we are... it's just so unsettling to feel like there may not be an easy answer.
I should find a support group, I know there is one locally, but haven't ever felt like I should join because we don't know what is going on. LOL

our kids (two of mine and lily) have so much in common, and we've had the whole "stumped professional" thing, too.
Your timing is amazing - we started our behavioral psych "treatment" today and she has already uncovered things about Drew in that 2 hours - it was astounding, really.
I'd love to chat with you about this either on the phone or via pm or whatever - phone is best for me because I get all off on tangents when I write LOL....but
I would be so VERY happy to even provide you with copies of stuff I get from our treatment team that might be pertinent to Lily, that you could share. Or even put your doc in touch with our doc once they have a better grip on what's up with Drew. We're still in the dark in some areas, too.

This is HARD. This is REALLY hard, and I know what you are goign through because I am there, too. I can only offer my hand in friendship and understanding, and I sincerely mean it when I say that. We may NEVER KNOW what is really going on but in the meantime it's important to remember that you are doing the best that you possibly can - it's going to take time and we HAVE that. Our kids are happy and thriving in our families because we ARE doing the best we can.

You need a PROFESSIONAL to give you a big freaking pat on that load bearing back of yours and tell you this. YOU ARE DOING A GREAT JOB!
*smooches*
and call me. seriously.
3.3.0.8.6.4.0.1.5.4

[Sue]

To Rebecca, Jill, Krista and anyone else facing significant challenges with their children. Jill post reminded me I want o say. You are all wonderful beautiful people. And your children will have the best possible lives because of it.

I know a lot of times, you think "I'm nothing special, I'm just doing what I have to do." But let me tell you you are doing FAR FAR more than you have to do. I can tell you from watching people who are just doing what they *have* to do.

You guys inspire me! If you think you are not doing anything special or just doing what you have to do!

[Hawthorne]

Bowel issues are common in kids with ASD. If he's known as the shit doctor, I find it surprising that he hasn't come across other kids with issues. My gastro deals with a lot of them.

That said, it's really common to be bewildered about management ;).

Has she been thoroughly checked out for physical issues? I spent a few too many years with doctors and professionals assuming it was behavioural when in fact it is physical for both my boys.

I think what's confusing is that on many/most fronts she is very, very normal. The issues that he said he has dealt with were involving kids who would go over to the couch and pull down their pants type thing, or had more severe issues going on. So, I don't know. We didn't talk about his experience with poo at length! Frankly, that's fine with me because I get frustrated when professionals focus on it and I feel like they're not looking at the whole picture. I went through a lot of that at her school.

Pysical issues: she has had a voiding cystogram, seen a gastroenterologist, been on a high fiber diet with scheduled potty sits. We didn't want to test for hirschprungs because we never have felt that was the issue, considering that she wets as well. This isn't a bowel issue. It appears to be the next step. She isn't holding, or constipated, she just *goes* wherever she is. It coincides completely with her hyposensitivity.
Also, she goes at regular intervals. She doesn't wet the bed at night, her bladder is capable of holding that much urine.
Does that make sense?

[Hawthorne]

You are so sweet, Sue. I agree with what you're saying too, because there are people here who do more and deal with a lot more than I do! I mean, Krista, my heart just goes out to her right now because she has such BIG stuff going on. Jill and Anna, dealing with stuff with more than one child, I think I couldn't survive (but you just DO, don't you?)

The hard part is that it never feels like enough, you know? I feel like I'm supposed to be able to fix it. That's what mommy's do. They make it all better.

But just let me say one thing. If I could be granted one tiny wish, I'm not asking for much here... could she please stop having accidents in the middle of my dinner!? lol (She's done eating, off playing, I'm the last one and she's calling me from the bathroom) Really, I'd just like my meal in peace.

[Jill]

I think what's confusing is that on many/most fronts she is very, very normal. The issues that he said he has dealt with were involving kids who would go over to the couch and pull down their pants type thing, or had more severe issues going on. So, I don't know. We didn't talk about his experience with poo at length! Frankly, that's fine with me because I get frustrated when professionals focus on it and I feel like they're not looking at the whole picture. I went through a lot of that at her school.

Pysical issues: she has had a voiding cystogram, seen a gastroenterologist, been on a high fiber diet with scheduled potty sits. We didn't want to test for hirschprungs because we never have felt that was the issue, considering that she wets as well. This isn't a bowel issue. It appears to be the next step. She isn't holding, or constipated, she just *goes* wherever she is. It coincides completely with her hyposensitivity.
Also, she goes at regular intervals. She doesn't wet the bed at night, her bladder is capable of holding that much urine.
Does that make sense?
It makes sense to me. We have not had a full GI workup yet but that is next - we've had some side issues that have derailed our "plan" these past few months. Once we have that, we'll know if we are looking at a physical thing. Our psych agrees with our neuro that for Drew it is most likely an interrelated cycle involving physical, psychological, and pure behavioral components. We haven't gotten into EXACTLY what that means but just hearing it I can pretty much think I agree.
As far as Hirschprungs, I know what you mean but they want to check Drew for it anyway because they are thinking it's possible that at a certain point the whole toileting thing gets blurred in his mind - he just GOES. He doesn't differentiate in his mind anymore.
*sigh*
this is by far the biggest, toughest, worst part of parenting I have dealt with so far. I am sure there will be more but right now, girlfriend, I feel you cause I don't know what I am doing or how I am going to get through this.
I take comfort in the fact that he's HAPPY and I am in good company. YK?
*holding your hand*

[Hawthorne]

As far as Hirschprungs, I know what you mean but they want to check Drew for it anyway because they are thinking it's possible that at a certain point the whole toileting thing gets blurred in his mind - he just GOES. He doesn't differentiate in his mind anymore.

My Gosh, Jill. It freaks me out to put her through it. Maybe I just don't know enough, but it's been the one thing I've blanked from my mind. I have really big issues with doing stuff to my kids, because of my experience as a kid (going into a semi-coma and waking up to being catheterized, having several spinal taps knowing my dad was standing outside the door). Now I know that it would be so different for Lily because we would TALK about it, I would be there, but UGH. Mentally I just can't go there. The cystogram was TOUGH. Not for her at all thankfully, but I was a MESS.
I'm not saying it shouldn't be done, because there is that part of me that *wonders* if it could be that. I just need a lot of information, and have been avoiding it. Stupid *head in sand*. If you have it done, please tell me everything they tell you.

Thank you so much, you are my hero. I think of you all the time.

[Jill]

My Gosh, Jill. It freaks me out to put her through it. Maybe I just don't know enough, but it's been the one thing I've blanked from my mind. I have really big issues with doing stuff to my kids, because of my experience as a kid (going into a semi-coma and waking up to being catheterized, having several spinal taps knowing my dad was standing outside the door). Now I know that it would be so different for Lily because we would TALK about it, I would be there, but UGH. Mentally I just can't go there. The cystogram was TOUGH. Not for her at all thankfully, but I was a MESS.
I'm not saying it shouldn't be done, because there is that part of me that *wonders* if it could be that. I just need a lot of information, and have been avoiding it. Stupid *head in sand*. If you have it done, please tell me everything they tell you.

Thank you so much, you are my hero. I think of you all the time.

Oh, that just breaks my heart that you have such memories of medical procedures as a child. I think I am just lucky not to have had any terrible experiences (other than when I had my tonsils out where I puked on the nurse and she practically neglected me whenever she was on duty after that LOL...)
I promise to keep you posted on everything we do on our journey with Drew. I am sure that even if it's not pertinent to Lily it will give you hope because I have found MY hope from others who have/are going through similar things even when it's not the same path.

[Hawthorne]

Oh, that just breaks my heart that you have such memories of medical procedures as a child. I think I am just lucky not to have had any terrible experiences (other than when I had my tonsils out where I puked on the nurse and she practically neglected me whenever she was on duty after that LOL...)

:spit: Did I mention I had to eat an insane amount of jello cubes in the 9 days I was hospitalized? It was just a HORRIBLE experience all around! :shockfunny:

[Jill]

You are so sweet, Sue. I agree with what you're saying too, because there are people here who do more and deal with a lot more than I do! I mean, Krista, my heart just goes out to her right now because she has such BIG stuff going on. Jill and Anna, dealing with stuff with more than one child, I think I couldn't survive (but you just DO, don't you?)

The hard part is that it never feels like enough, you know? I feel like I'm supposed to be able to fix it. That's what mommy's do. They make it all better.

But just let me say one thing. If I could be granted one tiny wish, I'm not asking for much here... could she please stop having accidents in the middle of my dinner!? lol (She's done eating, off playing, I'm the last one and she's calling me from the bathroom) Really, I'd just like my meal in peace.

First, I will send all the "save it for after dinner" vibes I can muster over your way...
OK so here's the deal. It never WILL feel like enough, but it is. Mommies do make it all better - you are providing her with a life that is free of the crap that would bring her DOWN. You are doing what you can to make things better LATER. You are nurturing her and kissing her boo boos along the way. You are doing all of that and MORE because she needs more and you honor that.
You, my dear, are the epitome of mommy making it all better. It just doesn't always happen overnight - and I understand how blasting frustrating that is.

[skyra]

It never feels like enough, no matter what it is, no matter who you are. Our situations are all alike in that we are all struggling to put one foot in front of the other some days and different in that our children are all individuals with different stuff going on. BUT...what is happening in our own hearts is exactly the same. Your stuff is huge as well. One thing I have learned through all of this is that there is always someone out there with something bigger going on, but that doesn't mean that it isn't huge in our own lives. We have our little victories and our huge setbacks and we just DO IT.

((((((LOVE LOVE LOVE))))))))))

You are so sweet, Sue. I agree with what you're saying too, because there are people here who do more and deal with a lot more than I do! I mean, Krista, my heart just goes out to her right now because she has such BIG stuff going on. Jill and Anna, dealing with stuff with more than one child, I think I couldn't survive (but you just DO, don't you?)

The hard part is that it never feels like enough, you know? I feel like I'm supposed to be able to fix it. That's what mommy's do. They make it all better.

But just let me say one thing. If I could be granted one tiny wish, I'm not asking for much here... could she please stop having accidents in the middle of my dinner!? lol (She's done eating, off playing, I'm the last one and she's calling me from the bathroom) Really, I'd just like my meal in peace.

[Sherri]

I think what's confusing is that on many/most fronts she is very, very normal. The issues that he said he has dealt with were involving kids who would go over to the couch and pull down their pants type thing, or had more severe issues going on.

That kind of thing is actually far less common that the physical and sensory issues affecting accidents with autistic people, but they are more likely to be referred to a psych. for it rather than sticking with gastroenterological treatment.

Pysical issues: she has had a voiding cystogram, seen a gastroenterologist, been on a high fiber diet with scheduled potty sits. We didn't want to test for hirschprungs because we never have felt that was the issue, considering that she wets as well. This isn't a bowel issue. It appears to be the next step. She isn't holding, or constipated, she just *goes* wherever she is. It coincides completely with her hyposensitivity.
Also, she goes at regular intervals. She doesn't wet the bed at night, her bladder is capable of holding that much urine.
Does that make sense?

One thing we've had that you haven't had done that's worth considering is a MRI of the lumbar/sacral region to primarily rule out occult spina bifida/tethered cord syndrome. We did that with Daniel when he started having pee accidents as well as poop. Though it was negative for all those, it seemed like a good thing to do. D's GE also said that it was good to rule out things like a lipoma that might affect bowel function. We opted for a SitzMarker study and analrectal manometry in order to avoid anaesthesia--but in retrospect a sigmoidoscopy might have been easier on us all, especially Daniel.

I hope you can get some more helpful answers.

Sherri

p.s. if she is always having accidents when you are finishing dinner, that tells you when she should be doing a timed sit on the potty. 10-40 minutes after a meal is prime time, perhaps she is finishing before you so that 10 minutes after she finishes, you're still eating (I would be!). See how predictable the accidents are and have her be on the potty a little before they are scheduled to arrive.

[Hawthorne]

That kind of thing is actually far less common that the physical and sensory issues affecting accidents with autistic people, but they are more likely to be referred to a psych. for it rather than sticking with gastroenterological treatment.



One thing we've had that you haven't had done that's worth considering is a MRI of the lumbar/sacral region to primarily rule out occult spina bifida/tethered cord syndrome. We did that with Daniel when he started having pee accidents as well as poop. Though it was negative for all those, it seemed like a good thing to do. D's GE also said that it was good to rule out things like a lipoma that might affect bowel function. We opted for a SitzMarker study and analrectal manometry in order to avoid anaesthesia--but in retrospect a sigmoidoscopy might have been easier on us all, especially Daniel.

I hope you can get some more helpful answers.

Sherri

p.s. if she is always having accidents when you are finishing dinner, that tells you when she should be doing a timed sit on the potty. 10-40 minutes after a meal is prime time, perhaps she is finishing before you so that 10 minutes after she finishes, you're still eating (I would be!). See how predictable the accidents are and have her be on the potty a little before they are scheduled to arrive.

English please! lol Just kidding, I'll be googling.

She doesn't always have her accidents at that time, at all. In fact, it's her lack of predictability that has made this so hard. I would love to schedule her, but in all the time that we were doing high fiber and scheduled sits, she never ONCE went when I had her sit.

[Jill]

English please! lol Just kidding, I'll be googling.

She doesn't always have her accidents at that time, at all. In fact, it's her lack of predictability that has made this so hard. I would love to schedule her, but in all the time that we were doing high fiber and scheduled sits, she never ONCE went when I had her sit.

I just wanted to chime in that Drew NEVER goes when I have him sit. I've been round and round with this shit (heee pun!) and I've learned that what works for one isn't necessarily the answer for another - we've YET to figure this out. Remember my laxative mess? OMG. NOTHING accomplished, just a big crappy nightmare for me.
I am going the psych and physical route because I have to do SOMETHING but I have resigned myself to the idea that we may never *really* know and that in time it'll work itself out. Or it won't. Which would suck but it is what it is and I wasted waaaayyyy too much time feeling angry and sad and I am trying with all my might not to go there again. Moments, yes. I have many many moments. But "That Place" is a place I never ever want to go back to.

[Hawthorne]

I just wanted to chime in that Drew NEVER goes when I have him sit. I've been round and round with this shit (heee pun!) and I've learned that what works for one isn't necessarily the answer for another - we've YET to figure this out. Remember my laxative mess? OMG. NOTHING accomplished, just a big crappy nightmare for me.
I am going the psych and physical route because I have to do SOMETHING but I have resigned myself to the idea that we may never *really* know and that in time it'll work itself out. Or it won't. Which would suck but it is what it is and I wasted waaaayyyy too much time feeling angry and sad and I am trying with all my might not to go there again. Moments, yes. I have many many moments. But "That Place" is a place I never ever want to go back to.

Oh I totally get you. I will never forget the stupid doctor that I saw that told me that by having Lily in pullups, I was telling her it was okay (this was at her Kindergarten physical). I just looked at her and said, "She NEEDS to know it's okay." If it's NOT okay, than I am one PISSED OFF mama, and that does NOT help ANYTHING. This woman had no freaking clue what we were going through and was happily placing BLAME on me. I never went back.

I still get frustrated, but from a very different place in my heart. I'm not angry, just tired. I am matter of fact now. I've finally gotten to the place that I am teaching Lily how to clean up after herself without any negativity attached and she is *learning*. She still tells me that she can't or doesn't know how or that I'm mean, but I tell her how and she does it. LOL I'm hoping it's as huge in her mind as it is in mine that she can take care of her laundry, wipe herself, and run her own bath if necessary. I'm a consultant, that's all.

I am having a little freak out moment about this spina bifida stuff now. It's the only physical possibility that I've ever thought was a possibility. That feels weird to me.