Thursday, February 24, 2011
Luke had an initial developmental study done last year at our outpatient therapy center, the Meyer Center. It's been a year, so we had another study done today to monitor progress.
LAST Year at this time, these were Luke's results--he was 17 months old at the time:
(the age ranges listed represent his "developmental age")
Gross Motor Skills: 5-8 months
Speech and Language: 9-10 months
Fine Motor Skills: 6-8 months
Self-Help Skills: 6-8 months
Height: 31 inches
Weight: 19 lbs, 10 oz
TODAY's results (Luke is 29 months)
Gross Motor Skills: 9-12 months
Speech and Language: 14-16 months
Fine Motor Skills: 9-12 months
Self-Help Skills: 12 months
Height: 35 inches
Weight: 27 pounds
He's made huge gains. I can see on paper that most of the "suggestions" they made for improvement last year, he has now accomplished.
And yet...these pesky age ranges. I look at this and just get tired. Twelve months of hard, hard work and endless therapy sessions for only three (THREE!!) months of developmental growth.
And they, the sweet therapists, try to encourage me......that they are just a LITTLE skewed....the scores, I mean. A visually impaired kiddo is gonna have a hard time pointing at something across the room, so he was docked points for that. And his limited vision also makes utensil feeding a challenge, so he was docked for that. And he's not real interested (ok AT ALL interested) in scribbling or coloring....and again, who knows..maybe it's just because he can't see what he's writing. So, docked points again. And since he's decided he doesn't want to sleep from 2am to 5am every night, he was docked points for that. So, I get that. Not all kids fit neatly into a sweet little "standardized test".
Still, it's exhausting.
Maybe it's the rainy day.
Or the lack of sleep.
But sometimes the thought of "How are we ever going to get Luke caught up to where he needs to be?" just makes me want to go take a nap.
I'm sure by tomorrow I'll be back to my "nose to the grind" self. Back to researching what else we can be doing to help Luke. Back to teaching him how to use a spoon, how to cruise along the furniture, how to say his ABCs.
But doggone it, Thursdays are usually our day off. The one day we actually don't have to be anywhere for therapy. So, I'm gonna put a movie in, make a cup of coffee, listen to the rain, and just let Luke be Luke today.
Monday, February 21, 2011
Monday, February 14, 2011
I always sort of giggle to myself when I hear the words "I'm a stay-at-home-mom" come out of my mouth. If you're the parent of a special needs child, than you probably know what I mean when I say that "stay-at-home" is not exactly what we do! From Day 1 we've been on the go. The first four months, it was 3 trips daily to the NICU. After that crazy ride, it was an average of 4.2 doctors appointments every week (I made that number up....but you get my drift.) Luke had more doctors appointments during his first 12 months than I've had in my entire life. Those doctors appointments (thanks be to God!) have sort of tapered off and now it's therapy, therapy, therapy.
And I'll admit...I feel just a tad bit of pressure these days. There is just something about those first three years of life. I would impress with you some kind of fancy scientific statistic, but I don't have the time to go search for it at the moment. But I've read it enough times and, Lord knows, laid in bed at night hearing it replay in mind over and over again...."Those first three years are critical for a brain-injured child. We know that roughly 85% of the brain's core structure is developed by age 3." It's really been drilled into me.....do therapy now...do all you can. Don't stop. Catch it early. Despite his severe brain bleed, Luke does have a chance to develop new neurological pathways, new synapses...new neurons...his brain can "re-wire" and learn to see, to talk, to walk...to learn."
And so...off we go to "therapize", if you will, and do all we can to help Luke get the interactions and stimulation that he needs to grow and develop.
This desire to do more therapy is what pushed me to apply for the grant with First Hand Foundation (see last post). Because while we are getting excellent therapy right now, there were a few other options out there that I really thought would be good for Luke. But pretty pricey for a one-income family like ours and not covered by insurance (that's a rant I'll save for another day!)
Here are three therapies that Luke (and I) will be adding to our schedules:
**Hippotherapy--chose this because of how close Luke is to walking and this therapy seems to really help kids learn to walk. I also think this is an excellent therapy for visually impaired kiddos. We'll be staring hippotherapy in the Spring, here in Springfield. We'll go once a week for 8 weeks.
***Secondly, we're doing ABM therapy. We'll be traveling to St. Louis tomorrow to see Chad Estes, the closest ABM practitioner in the area. Here's a blurb about this therapy:
The Anat Baniel Method for Children (ABM) is scientifically based and the results have been validated by medical doctors. The practitioner of this method uses gentle, innovative techniques to help the brain of the special needs child form new neural connections and patterns that take the child beyond their current limitations. While it is a process, the changes begin happening right away and are often quite dramatic. This Method is a gentle, non-medical, learning-based approach. Movement and awareness are the main tools utilized for communicating with the brain, providing information the brain requires in order to form missing neural patterns. We have discovered that almost always, regardless of the specific diagnosis, the child’s brain is available for potent learning. It is through this learning process that children with diverse developmental issues can benefit from the Anat Baniel Method for Children. This method can be applied at any age; however, early intervention has generally proven to provide the quickest and most far reaching results.
There are some great videos on Anat's website, anatbanielmethod.com. All of them quite lengthy, so I didn't embed, but you can check it out if you're interested. I plan to take lots of video this week during Luke's sessions, so you can wait to see those too. We will be doing ABM therapy on Wed. Thurs. and Fri. of this week. We plan to go back for week-long sessions another 2 or 3 times this year.
**And finally, Music Therapy. Ahhh..music! What is there to say? Luke loves...ADORES music. Truly thank God for the gift of music....for all of us, but especially for the developmentally delayed and those among us who can't (yet) use words to express themselves. Perhaps, Luke has an even greater passion for music because of his visual impairment. All I know is, he likes it, he's motivated by it and we are thrilled to be able to take him to Drury University every week for Music Therapy. I'll be posting videos of some of his sessions on here soon. Until then, I know you'll love this story:
Pianist overcomes odds to win talent contest (make sure you click the link at the end to here him performing!)
A big thank you to First Hand Foundation for providing the funds so that Luke can participate in all of these therapies.
Will keep you all posted on progress!