Friday, July 27, 2012

Sorry for the silence

You may have noticed that after more than a year of weekly and semi-weekly posts, I have fallen silent the last couple weeks.

Or, maybe you're on vacation and haven't noticed a thing.

Regardless, I apologize but I just can't find the time or energy these days. Most of my spare time has been spent getting things back in order after our California trip and working on bringing my children's book Dark & Light into the light.

Don't worry, I'll pick this up again soon. In the meantime, here's a pretty picture:



P.S. JJ calls this color "yeh-yow" and Malachi says "Eh-low!" Exclamation point is mandatory for Malachi apparently.

Monday, July 16, 2012

More answers and more questions after our third ABM therapy trip

We just got back from our third trip to the Anat Baniel Method center in San Rafael, California. As with last time, it was a lovely trip not the least of which because I got to meet my newest little family member and have a homestay with a blog reader and her adorable family.

Before going, I was feeling pretty down about ABM and Malachi's progress, since we have passed his second birthday with very little gross motor progress. Maybe I'm just deluding myself, I wondered.

But the trip did prove to be modestly successful. I noticed the most change in what the practitioners are now able to do with Malachi. It was only at the end of our trip in May that Malachi had changed enough for me to be able to recognize the skills they were working on, most notably getting his hand to spontaneously catch himself from falling. (By the way, I've previously read in a physical therapy book that if this so-called "parachute reflex" is not developed by one year of age it will never manifest. With the help of ABM, Malachi is proving this to not be true.)

During this trip, several positions they were able to put him in comfortably brought tears to my eyes. For example:

Senior ABM Practitioner Sylvia Shordike working with Malachi in San Rafael.


There is so much great stuff about this picture. Malachi's belly is soft, his knees are bent, his hips and lower back are supporting his weight and his hands are flat, with fingers extended. He is clearly not struggling or "working hard" in the traditional sense, something that mainstream PT seems to value. He is relaxed and learning about the possibilities contained in his body just like children the world over do naturally. It is moments like this that make me certain that ABM is the right path for him.

Other improvements were in the quality of his rolling over — it just looks so much more graceful now and he can get onto his tummy more easily. In the last lesson of the week, the practitioner had both of his arms straight above him — a feat in and of itself — while she rolled him ever so slowly back and forth. It was smooth as melted butter. I've also started stepping up my expectations of him and now require him to roll to his side and tuck his chin down before I pick him up and several times I've seen him "help" me by pushing off the ground with one of his hands. I would say he's about 80 percent of the way towards being able to do it by himself, and the more we practice, the better he'll get.

This was also the first trip in which we had an appointment with Anat Baniel herself. Like many great masters, she makes her craft look easy. In fact, coupled with her intense personality, I had to bite back a smile as I realized to a layperson it might look like she was simply a stern Israeli mother figure:

"What is this? What are you doing? Stop slouching. Don't you know how to use your back? Here, it's like this: bend here, arms down, straighten there. See? Good. Doesn't that feel better? Now, sit like that from now on."

This is of course not — at least not entirely ;-) — what she is doing, as evidenced by the fact that it works. 

But this was also a trip in which I felt my understanding of what ABM is and what it isn't matured. Namely, it's not a miracle. At least not any more than penicillin or any other medical advance is. It is producing results in Malachi that experts will soon realize are not actually impossible and has done so for many other children. In fact, I happened to meet one as we exited our appointment with Anat. He looked to be in his late teens, he wore a helmet* and had slightly slurred speech, but otherwise moved easily. His mother said doctors told her he would never walk or talk and she urged me to disregard their evaluations of what my son will "never" do.

But like I said, it's not a miracle. It's not going to happen overnight. It will take lots of lessons, apparently even into Malachi's late teens and perhaps beyond. The schedule that Anat proposed to us to build on Malachi's momentum this summer would cost nearly $18,000. In our particular financial situation, that is a laughable amount of money. Already we have spent huge sums. Each appointment at the ABM Center is about 10 times more expensive than our co-pay for traditional PT, but is it 10 times better? I don't know if I can say that.

However, I hope you don't think that I've drunk the Kool-Aid when I say that I do actually believe if we had all the money in the world, we could take him to lessons all the time and he would quickly improve. But being part of the 99 percent as we are, I have to do a complicated calculus to figure out what combination of ABM and other expenditures will give Malachi the most opportunity and independence. It could be that an after-school program or a summer camp or a college education will give him much more satisfaction than walking. Even within the "cure" quest, it could be that some combination of ABM with hippotherapy, gentle PT, homeopathy and several other options I've considered would be best. 

It's a continual search for the "best" for my kid. I suppose in that way, I'm not so different from typical parents. 




* I don't know anything about this person's case, but it is not uncommon for people with CP to have extreme startle responses that cause them to collapse at an unexpected noise. It is for that reason some wear helmets.

Thursday, July 05, 2012

A Monster 2-year-old
Twin Birthday Party!

OK, so this is a post in which I will not talk about how difficult the boys' turning two was for me. Instead, I can pretend I'm just like all the other mommy bloggers out there and show you how beautiful and amazingly well-planned my life is so you can ooh and aah over my mastery of the domestic arts.



(Those who actually attended this party, feel free not to write in the comments about how it didn't look anything like this by the time you arrived.)

The theme was "little monsters" — (no not that "Little Monsters") — which I basically decided meant putting goggly eyes on EVERYTHING.

Exhibit A:



(Turns out there are edible candy eyes found in most major big-box stores. Who knew? Also, these delicious cupcakes are from my brother's fabulous vegan and organic cupcakery, Divine Cupcakes in Eugene, Oregon.)


and Exhibit B:




I also had many monster-related crafts that I thought were particularly clever (all hail Pinterest!).

This make-your-own-monster craft table



 was a big hit with the adults, as well as the kids. Here's Malachi putting on his "ehhz."


The concept was simple enough but allowed the guests to be very creative. I bought 16 mini cups of play dough and some bizarre foam stickers at the dollar store, as well as a variety pack of goggly eyes, chenille sticks (pipe cleaners) and puff balls. You smoosh the dough into whatever shape you want and then add stuff. Behold:




I also had modified this idea in what I thought was a remarkably clever way. I put a sheet of computer paper into a large Ziploc bag and squirted in some tempera paint. Then kids can smoosh it around without getting it everywhere.



And finally, not completely monster-related, but still a fun activity that Malachi could participate in was the crayon floor:



I rolled back the carpet in their room and taped butcher paper to the floor. New box of crayons and presto! An activity we can all enjoy.

And yes, we did actually have many wonderful guests at the party, but I'm starting to feel like I need to make people sign release forms when they enter my house and that's kinda weird.



Monday, July 02, 2012

The truth behind the safe use of bunk beds

The following is a guest post from BunkBeds.org that includes a lot of really interesting and useful information about bunk beds. It's sure made me consider getting our guys a bunk bed!





The truth behind the safe use of bunk beds

When you have multiple children, one of the biggest life savers for both space and convenience are bunk beds. These are amazing inventions that enable you to reduce the amount of clutter that you would otherwise have by removing an additional bed and instead putting one over the other, essentially maximizing the room that you have. This much is a given.

The trouble with this idea is that there are a lot of people out there who are afraid that using bunk beds with children will be unsafe, or lead to serious injury. If you are like most parents your children are your life and you want to do everything within your power to ensure that they are well taken care of. In the immortal words of Hamlet, "never doubt I love". This is why when you hear something like this you take pause and look for the answers as to what is the right direction. 

The truth be told, there is nothing completely definitive regarding whether or not bunk beds are unequivocally safe, at least in comparison to standard beds. There are many studies out there that point in one direction or another; however it is important anytime you look at a study that you keep in mind that there are typically dollars behind them. So with all this in mind, here is an unbiased summery of what is currently understood. 

Generally speaking, from what most emergency records show, there is not a large amount of bunk bed related injuries in comparison to standard beds, but there is still reason to be cautious. The experts for many years have indicated that children under the age of six should not have access to one, and those over the age of six should be sleeping in bunk beds that have railing that is at least 3 inches tall. 

Now ideas have changed a little bit, and the experts in the industry are starting to be even more cautious than they have been in the past. Now the standard age recommended to restrict usage is nine years old. Although this may make some parents cringe if they are already using them, because of the flexibility that space that they provide, the truth is it is more important to know and not experience something terrible than to benefit with risk. 

With that being said, for children over the age of nine that are utilizing these amazing beds it can really be a dream come true. Not only are they incredibly useful, they also come with a variety of accessory pieces that will enable you to get even better use such as shelving and desk add-ons. Having bunk beds can serve you and your family well, but only as long as you use them wisely.



In exchange for posting this article, Bunkbeds.org made a small donation to our effort to sell an awesome children's book that will fund Malachi's medical needs. 

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