When it came to Ari’s surgery, I dreaded the rehab almost as much as I dreaded the surgery. I signed Ari up for Conductive Education summer camp, which was Monday-Friday for three hours every day for four weeks of our summer… in downtown Phoenix. The commute, leaving Gabe and Bella with their nanny and missing their summer vacation, having Liam out and about during his nap time, trying to get Ari to cooperate with PT for 15 hours and car rides for at least 8 hours a week… were all reasons that I just could not get excited about it. Well, all those things still happened, but guess what? It was worth it! It was so worth the inconvenience to see Ari go from being a floppy noodle post-op to retain nearly 90% of her pre-op strength. But this time, it’s real strength and not just her tone. She’s using her real muscles instead of her spasticity, and she is looking good!
At this point in time, Ari has regained the ability to sit independently in a chair or on the toilet without falling. She has also regained the ability to stand for short periods with support using her hands on a bar to hold her up. She is trying oh so hard to take steps on her own. The right leg is still pretty obstinate, but the left leg is doing so much to try and compensate for it. She is using her right hand much more now than she ever was before. Our amazing conductor, Bea, stressed the importance of Ari’s right hand functionality, stating how it was essential to her learning to walk using a walker. She used reminders, elbow splints, handles at the table, toys, music, and anything else she could to get Ari in the habit of incorporating her right hand into the daily routine. Ari seemed tickled by all the attention to her oft neglected “rightie”.
If I were talking to a newbie, I would describe Conductive Ed as therapy boot camp. While its emphasis is gross motor, Ari also received OT, speech, and music therapies informally throughout the program. I love the equipment they use too… simple, ingenious pieces created to maximize function and benefit for the child without being cumbersome. They are also extremely affordable (I bought this therapy ladder for $35 for home!), convenient, and yes aesthetically pleasing! I don’t think I’m alone when I say that I am so tired of all the equipment resembling torture devises piling up in my living room. Not so welcoming. Now, this ladder is very discreet and not intimidating at all… it almost looks like furniture. I am so tired of feeling like, as a mom of a child with special needs, aesthetics should not matter at all to me. They still do! Most importantly, however, is that this ladder (and everything else) is so easy to use that I actually pull it out every day instead of once in a great while, which means Ari is improving lots because of it.
See this handle? It helps Ari sit up straight and use her right hand/arm. It only works with one of these slatted Conductive Ed tables (unless I drill two holes in my kitchen table), so it looks like I’ll be buying a table too pretty soon (for only $150 for a 6 ft table, why wouldn’t I?).
We also made some great new friends and connections while we were there. It is a sheer joy to talk with other moms living the same life. As far away as we may live, and as different as we may be in other ways, there is definitely an indescribable bond between us that is immediate and lasting. We share stories, ask questions, compare doctor’s notes, talk about new health findings, clinical trials, recent medical publications, great physicians, up-and-coming physicians, nightmarish physicians (cough cough Dr. Zozobrado), schools, IEP’s, caregivers, vehicle modifications, diet modifications, kitchen remodels and everything in between. We sit there together, trying to be secretary and executive assistant for our children (on the phone like mad scheduling appointments, coordinating everything and everyone in our child’s life from A to Z), but we get sucked into the very interesting conversation great feeling of “not alone” and we spent the hours talking/learning/healing with each other.
And while Conductive Ed may be over for now, we will be going back next summer. In the meantime, I will be taking Ari downtown (even further) to CRS Rehab for PT for one hour, three days a week, after school (read: there and back in rush hour with four exhausted small children). This, we’ve already been doing for a couple weeks, and it isn’t fun. In fact, it’s work… necessary work, but work nonetheless for everyone involved. There is no real joy in this, save it be for the knowledge that I am doing every thing I can to help my child recover physically from her surgery and reach her maximum physical potential. I also know that after just a few more weeks of this schedule, it will (hopefully) feel like second nature. I have always said that humans are so adaptable. I’ve seen this in my life and as a counselor to others. When necessity demands it, people can truly perform under some crazy conditions. At least, that’s what I keep telling myself :).
