Still True

January 2009

I wrote this post for Kidz a little bit ago.  It was posted today.  Over the course of a few weeks, I have certainly had my rough days with Samantha.  In fact, just the other day I was so frustrated getting her dang Theratog on her...she kept grabbing the velcro and pulling off those tabs before I could move on to the next part.  It was frustration beyond belief!  But, I have to say, in spite of her stripping off her theratogs as I try to put them on, I'm convinced Sammy's pretty close to perfect, and I still believe every single thing I wrote in that little blog post.  She's an angel.

Need to Clarify

I recently made a post on Kidz about the book What To Do With Your Brain-Injured Child.  There was a very valid comment and concern that was posted, and I feel compelled to reply to that, though I found I couldn't stop once I got going...so I decided to create my own post to help explain our process and experience a bit more.  I want to repeat that I truly feel like this comment was very valid.  We should question things.  When we read something that contradicts information we have received, we should investigate.  That is what I believe.  So, I thank this mother for posting that comment and making us all aware of what's out there.  If we didn't share these things with each other, there would be no point in Kidz. What community would we be if we neglected to share information with each other?  So, thank you Tiffany.  Now, though, I feel like I need to clarify some things...maybe why we choose it instead of coming off like I was announcing to the world the best thing next to sliced bread.  ('cause really, who can beat sliced bread?)

Below is what I began to post, and thought I'd just post it here instead:


Thanks for sharing that site Tiffany. I think it's really important that everyone know the full picture and not go into anything blindly, especially when it comes to helping our children. I immediately went to the article and read it. And, though I understand what is said, I question it on some points. My regular PT, old and new, use patterning with Sammy during our sessions...so the issue of patterning I'm quite comfortable with. And there has been more recent research that shows evidence of these techniques...and they aren't connected with Doman. Now, I honestly wouldn't put full stock in his institute, only because what I've heard is that they stay really strict to what Glenn Doman, the founder, developed. There was a group of therapist who broke off from Glenn Doman's group over the past few years (maybe 10) and started implementing new research with the old...what Glenn developed. As I think about the program we do with Samantha, there's so much more than the psychomotor things that the article speaks of.  In fact, we are currently doing little of that (if any come to think of it).  Instead, it is sensory intensive...but perhaps that's thanks to the group that has broken off?  I feel comfortable with our therapist who uses a combination of her training with Doman, but also newer methods. Perhaps the institute in Utah is among those people who broke off? I'm not sure. Our therapist works independently but is connected with the Family Hope Center in PA.

Due to my husband's recent job (yeah!), we just changed insurance companies.  We had to switch all doctors.  (not yeah!)  When we met with our neurologist, I answered all her questions and informed her about Samantha's history.  I then told her about this new therapy we were doing.  As I explained it to her, she encouraged us to continue with it.  It made sense to her, based on her knowledge of the brain.  Of course it was a condensed version I told her...but I told her what exercises we were doing with Samantha 5 days a week.  She seemed to fully approve and, again, encourage us.  It was a validating experience if nothing else.

Anyway, this could be such a long comment...a post in fact:)...but ultimately, there are 2 schools of thought. One is my husband's: you need, not just facts, but enough of them to make it substantial. I agree. Mine: Sometimes, if something works, I'm not going to wait until they come around. If it's anecdotal evidence, sometimes that's enough for me.  My mom and dad think echinacea cures their colds. Studies have shown NO evidence of that. My parents are never sick. It drives my sister crazy and she's always telling them they're crazy!:) I know, placebo effect...but hey, if it works and it doesn't hurt you...(though, I really do feel like at the time I was well enough informed.  I read books and articles and talked to those who had used the method.  I felt good about it.)



Could this therapy hurt? Yes! Though, I don't see how it can hurt the kids. Based on the article I read, I can see how it could rip a family a part...the time in intensive and it's quite expensive if you go to the institute in PA. But we haven't had that experience. It's quite inexpensive through our therapist (a mother who got into it for her own son...and then started doing it to help others...now traveling all over the world with clients from CA to Hong Kong), and I have felt nothing but support and encouragement knowing that anything I can do will help, even if I don't do my program 100% -- which I've never done. I actually felt far more stress 2 years ago when I was driving to 6 therapy appointments in 5 days. I had little life and was tired and busy and it was very hard to do that with a walking 9 month old in tote! Yikes! For us, this book led us to our therapist and it's been a great experience.


I feel a little sheepish now though. I hope I haven't come off an idiot or uninformed, but I really did research quite a bit before we decided, and we felt good. But perhaps I should have stated the information differently in the post. I guess, I believe the biggest things is feeling good about what you do. We're religious and so spent a lot of time praying about it and feeling, actually, guided to it and our decision. But others could easily say that was false hope. For me, it's different. But it's important to feel good about whatever therapy or medicine or doctor you decide on. We felt like when we began, we were/are ok with Sammy being the way she was/is. I'm not searching for a "cure" (which admittedly it seems like Glenn Doman says he can provide in many cases) just for something that will help her, aid her, in her progress to be whatever she is supposed to be...and I'm ok if she's supposed to be just like this the rest of her life.  She's incredible this little bundle of fire!  For me, though, I need to know I've wisely done what I could.  And, that may be just being her mommy, no therapy at all.  But, for now, I think there's something for me to do.  

Sheesh, was this too long? Yep:) If anyone has further questions, let me know and I can tell our whole story, or it's in pieces on our blogs. But again, no matter what, it's so important that we feel good about what we do and choose for our children -- no matter what our school of thought -- because they're our babies. I don't think there is one Cure All out there. And Doman made me skeptical based on all his work helping a vast range of people...but it just felt right for us.

I think there are a lot of parents of special needs kiddos are able to say, "Wow.  Look at what they are doing in spite of the diagnosis."  To me, that's proof of the potential within our children.  I see Samantha doing wonderful amazing things and think, "You, little girl, are a miracle."  So, it makes me wonder...what if I were to find what works for her, that somehow unlocks the door to allow more of that to shine through?  What if I understood the brain better, how if functions, how it changes, how it's so easily molded, and use that knowledge to help her and my other kids?  For me, through priesthood blessings and prayer, I feel like I've found something that works for her, for now at least.  I haven't given up on other therapies.  We still have PT and OT in and out of school...and I'm looking into Now I Can for an intensive session.  But, I feel so much peace about our decision with this.  No matter what, though, Sammy's always our lil' Samsquatch.  One heck of a girl.


So, anyone want to read a novel? Because if you made it through this comment, you just did:) (you may be able to mark it on Goodreads! ha!)

Still There

Sometimes I can get a little excited about momentary happenings...like Sammy saying words, and then she doesn't say them again for a long time.  I still classify all those "little" things as BIG things and usually it doesn't get me down.  But I get extra super excited when I notice that whatever it is I saw is still there days after.  Like, saying "more" and "water." 

Today, before the bus came, I decided to be unhealthy and let her have some cake for a mid-morning snack.  It was there, I thought, what the heck.  It's good motivation.  I gave her a bite.  "mmmmm"  I gave her another bite.  "mmmmmmoo"  I went to give her more, but she just smiled, as if she was thinking, "Come on Mom.  We both know you're going to give me that cake no matter what I say."  But I didn't.  I didn't give her that bite until she said, "mmmmmmmoo" -- and she did. 

Her mouth was getting pretty dry.  I thought she may want water.  I held the cup, and before I could ask her, she said, "wa-ya.  waaaa wooo."  I'm calling that water. 

So, it's still there.  The girl's got words.

Words Words Words

The other computer is down and so I won't have any pictures to share for a bit, but we have some good news today.

Words!  Samantha didn't say any NEW words today, but she said significant meaninful words.

While she ate, she clearly told me "more" over and over again.
I asked if she wanted water, and I swear she said "water" and started immediately drinking from her cup.
Later, when we were doing some therapy, she was very unhappy about the light in her eyes.  I said, "Sammy, if you want me to stop, you'll have to tell me 'no'."  She looked at me and said, "NO!"

I love her words!  This was a very exciting day, indeed!

Therapy Update

Samantha dear,

Well, we are back on track, I'm happy to report.  Yes, I took a couple weeks off doing some therapy with you, and it was hard to get going again.  We were hitting...oh 50% or something.  I hated that I wasn't doing what I should be doing, but I couldn't find the umph to do it after all of us being sick.  So, I decided to SNAP out of it.  And I called Patty.  And it did the trick.  I think I just needed to hear that it was ok to take those couple weeks off while we were sick and then just do the best you can do.  After all, she said she just did the same thing with her kids...and she informed me that Decembers in their home is pretty much therapy-free.  It's good hearing from other moms doing the same thing.  I never thought I was someone who "needed" that...a group of sorts to buoy me up.  But golly it looks like I am after all.  What have you turned me into lil' Sammers?!  Oh, I love you for it.

So, here's the official update lady.  I'm really proud of you.  You've done some great stuff lately.

Eyes: I think your eyes are officially dilating and constricting like ours.  Quickly.  They shrink up pretty fast when we can actually get a look at them.  Today, while you were eating breakfast, I flashed the light in your  eye.  I know.  We weren't in a dark room, but we were pushed for time and I wanted to do it.  Even, in the daylight, I could see an immediate change ... shrinking of that pupil. So, that's that.  We'll keep doing it until we hear differently, but I think your eyes have actually been like this for a while now.  So, yeah!  (Hopefully when Donna comes back in January she'll agree.)

Startle: Remember how before, when we'd try to startle you by banging pots and pans or blocks together you just looked up at us like we were annoying you?  Actually, most of the time you'd smile at us.  It's cute.  Well, I didn't realize what we really needed was for you to jump a little bit.  So, we've been working, and your startling has WAY improved.  We were hitting about 50% on a good day.  Now, we're getting between 70-90% of the time.  I have decided that the times you don't startle, I think it's becuase you see me and what I'm about to do...but I carry through anyway.  See, I'm supposed to be sneaky about it, and this mama just isn't always so sneaky.  Because, really, you are beginning to startle to noises just around you more often.  For example, I turned the stereo on and it was a little loud...a song was playing...and you were shocked, but then smiled.  A door slammed yesterday and you startled.  Callie threw something on the deck (yes, out of 2 year old anger).  You were inside, but the door was open.  You had been concentrating on some task and when you heard that, you startled...immediately popped your head up and had a look of concern.  So, I call this improvement.  But, again, we'll continue to do it.  I'm not confident that you have it yet, but I think you're making fantastic progress here.  And let's be honest, it's kind of fun to scare you.:)

Textures:  This is the hardest for me to do because I don't think I have a really good variety of textures...so I'm working on that...but also because it takes longer.  I know, we're talking seconds here, but still.  You're not too cooperative during this either, so it's just the exercise I dislike.  Ok?  There it is.  I don't like doing this one so it gets put off.  In terms of progress?  I think it's about the same.  I can tell you like or dislike certain textures, but I'm thinking it's not enough. 

Sound Location:  Hello!  Huge improvement here.  Really.  You are starting to be able to locate sounds almost 100% of the time...quickly.  I've only been focusing on periphereal, above and below.  But, I've noticed you turning to sounds that are behind you.  These aren't sounds that I'm creating for therapy, but just sounds.  So, you're more quickly picking up stuff behind.  Yeah.  I'll be starting to work on that next.  I want to finish the week off strong and I want to practice with some more higher pitches this week.  It seemed like there was one that you were slower at finding...and I want to make sure you get that.  I'm not sure if it was the pitch or the distractions in the room.

Smell:  Well, I've discovered you don't like cloves.  Either does Callie.  I don't get it.  mmm  Cloves.  Oh well.  We'll keep introducing you to smells though until I get some more, real distinguishable likes and dislikes here.

Hands:  I love your hands.  I feel like, again, they are just so much more open.  I'm trying to work on having you USE your open hands now more effectively, but ya know.  In time.

Babinski Reflex:  Same.  You are in new DAFOs now that are set to neutral.  Before you were in a heel kind of, which I totally hated, but you had lost so much range that we had to put you in those stinky heeled DAFOs.  But now, you're in neutral and are standing up so much straighter and are a super star.  We are working on integrating your Babinski reflex.  Your new neurologist actually thought that you had an integrated babinski in the one foot, but then you didn't do it again.  So, maybe that's a sign of improvement...headed in the right direction.

Keep working Sammy.  You are awesome!  You impress me everyday.

I love you,
Mommy

Sisters

Sammy,

You have a little sister who loves you so much!  It's really sweet to watch.  She's (mostly) happy and caring and tender and wonderful to you.  The other day, while you were at school, we went to the park.  On the way there she said, "I want to go to the park with Sammy."  She kept insisting we get you from school so you could play together.  While we were at the park, she was telling her new friends there "Sammy is my sister."  She loves you.  And the cool thing is, even if you don't always cooperate with her hugs, you pretty much love her too.  You light up when you see her.  She makes you smile and laugh.  It's pretty fun to watch.

Feeling blessed,
Mommy

Oh That Face

 Samantha,

You have the most expressive face, and I love it!  I'm grateful for it.  This is just a quick sampling of some of your funny and happy happy faces -- that first one is pretty stellar, don't you think?

I love you!
Mommy

 

Oooooh my...

you never cease to make me laugh.

Cutest Patient Ever

And that's one pretty cute doctor too.

Happy Halloween 2010.

And Chloe...though I don't know you, I'm not feeling any creep-factor.  Read all you want.