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!)

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

Neuro Therapy Update

Samantha,

We've been working really hard, trying to do all your therapy as best we can at home.  You still get PT with Kathy and OT with Tiffany through CCS, but we are supplementing with this therapy at home.  You know the drills.  You scored really low for your neurological age.  Bummer.  I think you tested at 7 months!  Woa lady.  You aren't 7 months anymore.  So, we're helping you get neurologically older. 

There were some basic, life saving skills that you lacked that we are trying to develop.  Like, you don't startle to loud noises.  Tell me, what would I do if you had walked out in the road, a car was coming by, honked their horn, and you laughed?  Because that's what you do now with loud noises.  Not even a cringe.  This isn't good Sammy and I can't imagine losing you that way.  How about eating anything...even if it smells Nasty McNasters?  There's a reason things smell the way they do.  We aren't supposed to eat molded food or excrement.  You want to put anything in your mouth.  So, we're working on your olfactory sense.  We're helping you smell better.  When Donna poked you with a pin, you didn't give any sign of discomfort until poke #10!  Girlfriend!  Are you kidding me?!  Sure, she wasn't piercing the skin, but it was unpleasant when she did it to me...and it was for you too.  But your reaction is a bit slow.  So, we're sharpening up the sense of touch by rubbing textures all over you.  I'll explain it all to you later.  In the meantime, keep letting me do what I need to do.  Ok?  Because I sure love you. 

I'm going to keep our progress here for you.  Then we can go back and check it out...see the progress.  I love you sweet girl.  You're doing great!
 
Eyes:  We are using a flashlight in a dark room to practice dilating and constricting your pupils.  I think you've made improvement here.  But I still need to compare your pupils with Daddy's.  You have started to hate doing this, so I give you an M&M after each time.  You're a little better during the sessions because I think you anticipate the chocolate?  Or maybe because you're just giving me a break on this one.
 
Startle Reflex:  You are starting to startle about 50% of the time now.  That's an improvement.  You still giggle, but it's after a little jump.

Hands:  We're working a lot on your hands, and girl, I've seen a ton of improvement here.  I didn't even know if you could open your hands!  Ok, I'm exaggerating, but still . They are always so tight and red; but now, your hands are much more open.  You are gripping things better.  I think this has to do with this exercise combined with the texture exercises.

Babinski Reflex:  So, tell me Sammy.  How are you going to properly step if you've never integrated your babinski reflex?  When something hits your foot, your toes still curl upwards, like an infants.  Taking a step will be harder if your toes naturally want to curl up.  So we're still working on integrating that to making your toes push down, like mine do and Daddy's and Callie's do.  You'll get there.  Hey, you're walking and they said you wouldn't.  So I know walking properly can be done.

Textures:  You are much more quick to get goose bumps and tell me you aren't happy with a rough texture.  You laugh, but it's a complaint.  It's on the verge of yelling at me or crying.  Whereas the soft textures, you giggle or smile.  Futhermore, young lady, when we were at Dr. Nachbauer's last week, you developed a poopy diaper and you really complained and cried until I changed it.  You have never done that before  Then I got report from Nicole at Scribbles and Giggles that you did the same thing there.  So, I'm pretty excited about that.  You should want your diaper changed, and now you do.  Yippee.

Locating sound:  I'm still working on sounds in front of you and in your peripheral range.  I know you can hear.  That's never been the question.  But you have never been able to locate where the sound comes from.  You struggle the most with up above and to the sides.  But you've improved a lot on your left side...the right side, last week, was still lagging.  Now, though, you are consistently responding more quickly to sounds on your right.  This has been fun to watch the past 2 weeks because there's been a lot of improvement.
  
Smell:  I've seen a change here.  I've mainly been working on good smells.  We've done lemon, orange, cinnamon, mint.  I just don't have a good variety of "bad" smells.  Ok, I have none.  I really need to work on that.  Anyway.  You are starting to really smell them instead of me just passing it along your nose...and after you smell it, you want to eat it.  Before, you wanted to take a bite out of it before you even knew what it was.  Twice I've taken a nasty diaper (I know, is this borderline abuse?!) and passed it by your nose.  Yuck to the max!  Both times you cringed.  You pulled up her nose, turned your head away, and pushed my arm away with your hand.  So that's HUGE progress I think.  Remember when you wanted to eat the barf smelling thing that Donna put in front of your nose?  Gross.


So, we're making progress sweet girl.  Just keep on keepin' on, and we'll see even more changes...I just know it.


Love you!
Mommy

What To Do About Your Brain-Injured Child

I don't know where to begin. About 6 months ago my life took a dramatic turn. Someone introduced me to Glenn Doman's work, and I began reading all of his books. They were basic parenting books -- how to give your children knowledge. I thought of Callie as I read the pages, though my friend said she thought it would be good for Samantha too. It wasn't until a few weeks ago that I read What To Do About Your Brain-Injured Child. This book is, to say the least, revolutionary. In it, he details all their research and how his program came to life.

After fighting in the Battle of the Bulge (interesting), he became a physical therapist where he worked with many stroke patients -- old and young. After a years time of massaging, stretching, doing exercises, no one showed any improvement, and some, even, were worse. How could this be? What he realized was that the traditional methods (back in the 1940s, 50s, and 60s) were only attempting to correct the symptoms of the real problem. The real problem is what he calls "brain injury." The injured brain could have received its injury before the baby was even born. Or, the injury, such as stroke, occurred later...post-natal. Of course this is the reader's digest version of the reader's digest....but he got a team together -- with Temple Faye (renowned neurologist...interesting article using his methods for autism found here) and other knowledgeable people in their fields -- to work together to come up with some answers. Why aren't people getting better? How do we fix the brain? What are parents supposed to do with their brain-injured children?

After coming up with a "plan" to help their patients, the results were phenomenal. As they did "exercises" that "exercised" the brain, patients were walking who had been in wheelchairs their entire lives, blind patients were seeing, deaf patients were hearing. Nearly 100% of their patients showed improvement after a year's time, and most showed significant improvements.

Doman and his team didn't claim to be miracle workers...just doctors who wanted to really fix the problem. He said there are a few cases that they couldn't help. But due to the impressive results, the received funding necessary to open a clinic and doctors and patients were coming from all over the world to Philadelphia to see and learn for themselves. That institute is still there. They still see patients. Other institutes throughout the world have been opened (Japan, Argentina, Brazil) to do this work within their own regions.

What is interesting to me, aside from the dramatic results that they saw, is that at one time these methods were considered extremely radical...yet today, some of these methods are widely used. Patterning. Oxygen therapy. Some of this stuff doesn't sound so strange anymore. Though some of the old school traditional methods are still used, they are often blended with the discoveries made by Doman and his team decades ago. They are becoming more and more mainstream.

I have mentioned this before, but I have always felt like I needed to keep searching for Samantha. I feel like we've had some amazing therapists, but they didn't have all the answers that Samantha needed...and then, Elaine led me here. I can't tell, after all the researching I've done to find out more about these methods, read the medical journals, etc...I can't begin to explain the peace I feel. I don't feel the need to keep searching because I finally feel like we have found it for her.


I don't believe I'm as naive to believe that Samantha is going to be "cured" or miraculously "healed," but I do have faith...and I would even say spiritual confirmation that we have commenced the proper course for Samantha for her to achieve her potential. I'm not looking for Samantha to be healed, I'm looking for her to be the little girl Heavenly Father intended her to be in this lifetime. For many reasons, He intended her to be microcephalic, with seizure disorder, developmental delay, etc. I'm ok with that, as long as I'm doing what I'm supposed to be doing in this lifetime, and becoming who I'm supposed to be, too.

Sammy and I -- and Marcus and Callie and Grammy and Bampa and Colin and Grandma and Grandpa and and and -- we're all in this together. And I'm so excited!

One thing I'd like to mention is that his therapy program, though varying from child to child depending on their needs (just like any other therapy, hopefully) is very parent/family-centered. A therapist came from Texas to assess Sammy and set up a routine that we do with her at home daily. It's been good so far.

Whether you plan on changing your methods of therapy for your child or not, I recommend this book. It's easy to read and understand and is just very eye opening.

Hands

Samantha was born with hands, but she has never used them properly. Most of the time they are tight, balled up into fists. They have been this way since she was an infant. We have worked on having her open them up, and we've seen improvements...but she still has a long way to go. There have been moments when she actually even relaxes and we see her hands laid out "normally" on a surface. That's quite a sight, and I get really excited!

Recently, with our new at-home therapy program we are doing, I do an exercise with her hands. I think I'm supposed to do it about 10 times, but I do it all the time...every time I think about it. And lately, that's been a lot. Plus, Analisa, my wonderful sister-in-law, regularly does these hand exercises with her. It takes about 2 minutes, and we're done.

Results? In 2 short weeks, her hands are opening up. She doesn't fight me anymore. This morning, even, she sat still as I did it...stretching her fingers back as far as they'd go. It was amazing. Earlier this morning, in PT, Kathy was shocked at the use of her hands! She asked me if this was because of the program we had started -- I told her that I didn't know exactly, but there has been definite changes since we started. That is soooo exciting!

We are all born with parts of our bodies for a reason. We have hands for a reason. And what if, just what if Samantha could use her hands better? Maybe she could explore more. Maybe she wouldn't feel the need to put everything into her mouth because she could explore with her hands instead. Maybe, she could one day she could even feed herself! Oh, the possibilities are endless when you can use your hands! AHHH Wahoo for progress!

Workin' the Flashlight

Yesterday I officially began therapy with Sammy at home. Yes, this new neuro program. We are starting small. For two weeks we will work on one thing, and 2 weeks later we'll add to the program. This week, we are working on Samantha's eyes. Interesting. I've had her eyes checked by a pediatric ophthalmologist at Primary Children's Medical Center in Salt Lake, City, and things checked out fine. But even still, I've frequently had therapists ask me how her vision is. They ask because it's probably routine, but when they ask me again, it's because they feel like her vision may not really be all that great. I know she can see me across a room. I am very confident that she can "see" but how well is she seeing? I do also know that depth perception is definitely not so great. But aside from that?

When Donna came and evaluated Sammy, she noticed that her pupils were rather large. And when she did a quick flash of light, they were slow to dilate. There is a reflex within the eye that causes our pupils to dilate according to the amount of light. If they don't do that properly, then they can't appropriately see images as well...and if she can't properly process the amount of light, how can she possibly move on to a larger "eye" task of depth perception?

One thing that is incredible, is that we can develop this reflex by practicing it. As we do so, the brain gets that stimulation and learns how to process it. So, how are we improving this reflex? Yep. I'm flashing some light in her eyes for a second at a time. Sounds crazy, I know. And many will think this is a pile of bologna...but you can think that. That's ok with me. I was worried about flashing light in her eyes, but then found out that the only dangerous light to our eyes are UV light...and as amazing as the flashlight is, it doesn't have those rays in it. Nope. No tans coming from this flashlight.:)

So, the week begins. I'm to do this 10x a day. Yesterday I did it 4 times. Oops. I have found that it's harder to schedule it in than I thought it'd be. Maybe I just have to get into the routine. So, here's to week one!

Neuro Developmental Therapy

Samantha has had many priesthood blessings during her short life. All of them have brought me peace in the moment, but some of them I think of often. The words run through my mind and I am constantly reminded of blessings the Lord has in store for her.

When she was born, her great grandfather gave her a blessing. Because of certain things that were said, I have felt that there are things we need to do in order to help her achieve her earthly potential. I have tried very hard to be her advocate...to do whatever we can to help her progress...to take her therapies seriously, etc. But, I'm also just her mom...so I love and hug her as much as I can, and if she's upset...well, I've been known to tell our therapists, "I think she's done for the day." BUT, I can also be one tough cookie. There's got to be balance, right?

There was another blessing she received where she was told her head would grow. I remembered being shocked. Samantha's head measured small in utero, but continued to grow...until she was 4 months old. At that time, her head stopped growing, and measurements have been the same since then (32 cm) and she is now 4 years old. No growth. But, I have faith in that blessing. So, how can that be? Well, maybe in the next life. I asked her neurologist once about brain growth, and he said, "Well, as long as progress is being made, the brain is growing. It may not be measurable, but there's some kind of growth." That satisfied me. I felt like as long as Sammy was progressing, there was fulfillment to that promise.

About 8 months ago I spent many hours reading a series of books by Glenn Doman. I was intrigued and read as much as I could. He has an institution in Pennsylvania where you can get your child evaluated and put on a program. I felt pretty sure that we needed to do this, but I didn't know how to do that. A friend directed me to Patty, a woman in our stake, who had gone through a program based off his research and saw huge successes with her children. I immediately called Patty. She told me her story (her story consisting of 3 of her children) and told me about Donna Bateman...a therapist who was trained by, and continues to work with, the Family Hope Center -- an offset of Glenn Doman's institute, pedagogy, etc.

Long story short -- we met with Donna. She flew out to San Jose and did an evaluation on Samantha. (And, this was way way way less expensive! She's a mom who became trained herself because of her son who had his own problems. She is now wanting to share this with the world...and does.) She did an evaluation on Samantha. She got us set up on a program. And we will begin next week.

The idea is that you need to start at the basics of the brain. There are certain reflexes, reactions, skills that kids should have. If they don't, then we need to go back to those and work on those before we can move on. It's so much more than that, but this post is already too long. We went to a seminar that explains it all (though you can get all the information in Doman's books), and Marcus, who is spending many hours a day studying for the EPPP (psychology licensing test) found that what they were teaching us matched what the scientific world knows and says about the brain. So, no funny stuff here. Marcus, the good man that he is, is often leary about what I introduce. He wants facts. Research. Stuff to back it up. But, he usually goes along with it as long as he doesn't see any danger in it. This time, we both feel so good about this path we're pursuing, and I can't wait to begin.

Side note: Research has shown that with this program, brains grow. And not just how my neurologist told me...but the actual measurements change. I can't help but wonder if we will see any changes, if this will be a greater fulfillment of the blessing Samantha was given. Either way, though, we press on.