It's all connected
Malachi's tight extensor (back) muscles make him much flatter on the floor than
his identical twin, Jaden, who often holds his limbs off the ground.
© Jessie Kirk Photography
You're going to have to trust me that this was a beautifully eloquent post that perfectly described my thoughts and feelings — until The Great Blogger Blackout of 2011 erased it and I had to start over from scratch. I do apologize. In the immortal words of Tenacious D: "This is just a tribute."
I wanted to explain how connected the human body is and how normal development requires all the pieces to work together. When one of those pieces is missing or interrupted, as with special needs kids, a chain reaction can occur.
For example, let's just say that Malachi's brain damage only affects his triceps. (It's, obviously, much more complicated than that.) So if his triceps — those upper back muscles necessary for rockin' high fives — are a bit tighter than normal, this means that he has a very hard time getting his hands in his mouth, which means he has a hard time getting toys in his mouth.
This means that his teeth are coming in slower and his jaw muscles are underdeveloped, because he hasn't been chewing on things nonstop, like his brother. This means that chewing food will be more difficult, as will repeating consonants ("mamama," "bababa," "Mambo Mama, Mambo Papa, shoutin' olé with it, wow"). It also means that he will have less practice getting his tongue and lips out of the way, leading to possible trouble forming other words — not to mention the very irritating habit of biting one's tongue.
Over-tight triceps also cause trouble when he wants to push up from the ground and, eventually, when he wants to put one arm over the other to crawl. A lack of crawling entirely or just not crawling on time could lead to a variety of movement problems, but also the reduced practice at spatial relationships (i.e. do I have enough clearance over my head to crawl under the table? Can I crawl in between these chairs without getting stuck?).
All of these things, from speech to the skills needed for parallel parking can be traced back to tight triceps. Kind of amazing, huh?
Once certain muscles catch up, there can be a blossoming of movement as all the pent-up abilities are released. I believe that's what we've seen lately after an intensive ABM/Feldenkrais session that really concentrated on opening up his shoulders and upper torso.
But some things may never catch up. In one neurodevelopmental study, they blinded kittens (I know, right? Who does that?) by blindfolding them at a critical period in their development. The kittens' brains received no visual input and so used that space for something else. Even after researchers took off the blindfold, the cats were never able to see. There's no studies like this on humans (understandably) but it does make me wonder how much of what Malachi's disability ends up being will be due to his primary injury or to the secondary effects of missed milestones.
Fortunately for us, the interconnectedness of the human body can work to our advantage. The ABM/Feldenkrais methods teach how one can work around a tense area of the body. On Malachi, this means, for example, we can use his hips to "talk" to his shoulders instead of attacking them directly.
This is good because babies, to their credit, don't understand the meaning of the word "should." As in "you should move your arm this way" or "you should practice wiggling your body to strengthen your core muscles." Unlike we miserable adults, babies don't do things because they feel they have to. They do things that they want to do and things that are easy to do.
It's our job to make things as easy as we can, but it's up to them to do the rest.
Thanks for stopping by! Won't you take a minute to donate to the cause of teaching Malachi to walk? Feldenkrais is not covered by insurance although we believe it is helping tremendously. Even the smallest donation will help us reach our goal of $1,000 before the end of June. See the donation button at the top of this page in the right hand column. Thank you!
Actually, although there was no condition where babies were purposely deafened, the cochlear implant is a perfect corollary. When deaf babies receive cochlear implants within the first year, they do amazingly well, and develop speech and language that is close to on par with their normally hearing peers. However, if you wait until the child is a few years old, or, as some in the deaf community would like, until the child can decide for himself, the critical period is lost. No matter how hard the child tries, he or she will never be able to understand speech with the cochlear implant the same way those implanted at a young age can. Their auditory nerve went without stimulation for too long, and loses the ability to process the meaning of the sound.ReplyDelete
Interesting! Thanks for the additional info. The cochlear implant issue is definitely interesting. A wonderful example of people society considers "imperfect" saying "there's nothing wrong with us, what's wrong with YOU?"
You tell a beautiful story. Even though your nemesis is of the worst kind, you hero has powers to fight it. Humans have incredible will and Malachi will surprise us all in his development. Look forward to returning. Thank you for sharing with us your families life.ReplyDelete
@StashaWow, that really means a lot to me, thank you!ReplyDelete
Well written, and the concepts of our how the amazing and sometimes frustrating body connects are so compelling. Your love, understanding and empathy for your little guy shine through, what a rich and fortunate development he will have for that reason.ReplyDelete
Stopping by from TRDC
That kitten thing breaks my heart. I am always amazed at the human body, thanks for spelling it out how one thing can effect everything. I'm glad his therapy is helping.ReplyDelete
@SC MonacoThank you so much! I think that's true. Development is so much more than physicality.ReplyDelete
@AnastasiaThanks Anastasia. It breaks my heart, too, but I'm glad we have that information.ReplyDelete
The kitten experiment really surprised me. I had no idea. Tfs all this informationReplyDelete
I think you will love ABM - we do it and Cici loves it too! We will pick it up again this fall after hip surgery.ReplyDelete
Thanks for coming to my blog, I'll check yours out, too! I love finding other moms of identical twins with disabilities.
I'm impressed - excellent explanation.ReplyDelete
"how much of what Malachi's disability ends up being will be due to his primary injury or to the secondary effects of missed milestones." Indeed. This is one of the reasons I work so hard to educate parents on methods that do not help - wasting time and leading to secondary effects.
Speechless. Malachi is so blessed to have you as parents! Although worrying hurts, researching and loving as you do helps big-time. Didn't know about your blog until today, and didn't know your need for Feldenkrais. If you need donations, how is this done? Sending love meanwhile!ReplyDelete
Hello Anonymous, I don't know who you are or how to get in touch with you, but yes, donations are gladly accepted through the PayPal button. It sounds like you are having trouble with this though. See if you can find a "log out" button in case someone else has signed in? Otherwise, you can e-mail me directly and I can give you our mailing address. That way PayPal doesn't get a fraction of it anyway. Thank you, whoever you are!ReplyDelete