My Baby Rides the Short Bus

My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities by Yantra Bertelli


My rating: 2 of 5 stars


Perhaps my expectations for this book were too high. Or, perhaps I just went into reading this with a different purpose than what the book is meant for. Either way, I have to say, I was sorely disappointed. I had such high hopes. I had hoped that this book would address the reality of life with special needs, but also give a figurative high five to me...a pep talk of sorts...a "hang in there because life is good" type of book. In the introduction alone, I immediately started feeling bad and overwhelmed with my life. Instead of feeling uplifted, I felt a heavier weight, which was unexpected. For me, the tone felt bitter and angry. And I understand that, truly. Samantha's life hasn't been a walk in the park day in and day out, but I have tried to overcome some of those feelings and have tried my best to fill my life with light and love. And I felt very attacked for choosing to live that way. I believe the book is supposed to highlight lives from varying backgrounds, but instead, again I felt attacked for being a Christian woman who puts her trust in God, who doesn't live an "alternative" lifestyle as is so often mentioned, who likes the school my daughter is in and plans to keep her there, and and and. I was the type of person that these individuals often referred to who just didn't understand...the moms who were clean-cut, religious, and because of that seemed to just not get it. I often felt sad, discouraged, frustrated, and angry -- feelings I have tried to overcome -- while reading this. Even the contributors in the book who tried to lighten things with humor were often crude in their language and very sarcastic, still giving off that angry tone. It wasn't for me. I wasn't sure if the purpose of the book was to connect with other families with special needs, to buoy each other up, or to get a book out there to the rest of the world informing them of the difficulties of parenting special needs children. I'm still not 100% sure.




However, with all that said, I'm glad I didn't put the book down (which was my plan). Because as I read, I read about the unconditional love that these parents had. I read about how they are willing to do anything for their child. I read about happiness and victories. There were some entire pieces that focused on the joy of their children...but a majority was focused on the "dark side" with a final paragraph or sentence in there -- sort of the disclaimer -- "but I love my child with all my heart." And I believe them. That's not the point.




I believe there is immense value in sharing our experiences, good, bad, the ugly. But it was just too heavy for me, too discouraging, to read all in one book. Story after story, experience after experience, I just felt a weight that made me feel...icky...(how progressive is that word?). On the other note, a book that only highlights the joys and blessings of our special needs children may be too unrealistic or fluffy for others. And, therein lies the joy of books...and the freedom of reading what suits us.




Ultimately, I'm glad I read the entire book because I feel more informed about the literature that is already out there, and I know this book actually was a pretty big hit. Maybe that means my opinion is in the minority. And that's ok with me. I would hesitate to recommend it to everyone with special needs children as I believe it just needs to fit your personality and what you need at the time of your coping/healing/dealing process.




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Lucky?

Whatever you want to call it...I'm feeling that way.  I've been reading My Baby Rides the Short Bus -- more to come on that later (most definitely -- I have my feelings about this here book), and I have to say I'm not sure how I've dodged so many of these special needs bullets that everyone seems to write about in this book.  Sure, I've had some doctors who aren't as thorough or even nice.  But, really.  We've had extraordinary doctors.  I feel like, for the most part, they have done their job.  They have tried their best.  They have answered my questions.  We may not see things they same way all the time, but that, to me, doesn't mean that they are out to make my life miserable.  We have had great therapists who care about and love Samantha.  We have had AMAZING teachers who adore Sammy.  IEP's have never been a problem.  Not once.  I haven't had to go in ready to fight for what I want for Sammy.  Now, surely we've had our struggles and not everything has gone smoothly, but I'm either "blessed" or dang lucky because this book is making me feel guilty that I haven't had to go through these same things as the writers in this book.  This book is definitely...well, there'll be more on it later. 

Has anyone else read this?  I'm not sure, yet, that I'd recommend it.

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!)

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.

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.