We had seen very little progress after 1.5 years of conventional PT/OT every 1-4 weeks for an hour. E didn’t much like PT/OT and spent a lot of the time complaining when we did go.
She had progressed in gross motor abilities (commando crawling around 11 months and four-point crawling at 13.5 months, was now pulling to stand and taking independent steps now and then), but I think she would have been at the same point regardless of whether or not we had done any therapy. We had seen some temporary gains from our experiences with modified CIMT, but these didn’t last (as we didn’t yet know to keep doing constraint on a pretty much daily basis). At 2 years old, it also was apparent that E wasn’t going to “outgrow” her right sided weakness/neglect. I was pretty discouraged.
We basically stopped doing all therapy for a while.
In winter 2012 we tried Myofascial Release Massage Therapy – 4 sessions. E had never much liked being hugged or touched other than by those very close to her (I think partly sensory and partly personality). She tolerated the first 3 sessions with toys and distraction but she cried through the entire last session so we quit.
In spring 2012 we found out about the Anat Baniel Method (ABM), from the HemiKids support group (http://www.hemikids.org/). There was an opportunity to go to a practitioner near us, giving us a chance to try the method for E. This was significant, because at the time there were only 3 ABM practitioners in Canada who worked with children – all very far from us.
What is ABM? Hmmm. A trained practitioner guides the child gently into new movement possibilities. The child plays. For example, say E is playing with a toy and reaching up with her left hand, the practitioner uses the momentum of her movement to guide her further than she would normally go, and when she moves back to correct her position, guides her further than she would normally go this time in the direction where her movement is usually restricted – off to the right a bit. This is a movement she normally wouldn’t really make, but it doesn’t hurt, so she pauses, notices, and continues playing. This happens over and over again during a “lesson”. After a group of lessons, she starts to incorporate some of these new movements into her repertoire, leaning a little more to the right, reaching just a bit higher, farther. From my understanding, ABM helps to organize motor skills in closer physical areas in the brain, making more efficient pathways. Kind of like rebooting a computer…..
The method supports the brain’s ability to overcome habits and automatic responses through Nine Essentials. (see Anat’s website: http://www.anatbanielmethod.com/about-abm/the-nine-essentials) It is described well in her book, Kids Beyond Limits, which I highly recommend for parents of children with challenges.
One of my favorite essentials is Variation. In perinatal stroke, the weaker side often gets “stuck” and performs the same small range of movements, which get grooved in. Think a wheelbarrow, or cows, always following the same path. The more you go down the same path, the harder it is to jump out of that pathway. Same with neurons and habits. If you can introduce variation in movement, it’s like a little “aha!” to the brain that new movements are possible. (Incidentally, this doesn’t just work for movement, but also emotions, behaviors, and cognitive skills).
My other favorite is Attention – helping the child to be aware of what they are doing, sensing, thinking and experiencing at any given moment… Drawing attention to what is going on helps the child make other choices. I have found this to be amazingly effective behaviorally – “N is playing with a hammer. It looks fun! E is walking towards him…” – This often prevents toy stealing/fighting just by drawing attention to what they are doing!
Anat recommends that lessons occur in blocks, called “intensives”. An intensive involves a set of 8-10 lessons (usually 45 minutes long) over 4-5 days (2 a day), ideally repeated monthly.
Intensive 1 (11 lessons):
We did our first intensive in March. It was actually very uncharacteristic for us – we decided that I would take our 9 month old and 2 yr old by myself to a big city, stay at a stranger’s house for a week, and take the kids twice a day to a downtown hotel to meet a strange male for “lessons” in an alternative therapy I had only just found out about (both myself and my husband are both very scientifically inclined), paying huge sums of money in American cash. It didn’t help that we were currently watching episodes of Dexter.
Well, my husband decided to accompany us for the first day of lessons, thankfully – and the practitioner was EXCELLENT, as were the strangers with whom we stayed, who are now good friends!!!
Here are the changes we noticed during the week of lessons and the several weeks following:
- improvement in posture
- balance had definitely improved – I could change her diaper standing up without her grabbing on tightly to me!
- noticeably started moving more fluidly
- started spontaneously using her right hand – she actually used Mr. Right Hand to scratch her face and rub her nose!
- examining her right hand with her left hand a lot
- right arm started hanging loosely by her side most of the time instead of “winged”
- gait improved (this regressed a few weeks after the intensive) – right leg didn’t lag behind as much
We were so impressed at all the changes in ONE WEEK that we promptly booked Intensive 2. I should also mention that although E initially complained to be at each session, within 5 minutes she was having fun and smiling and laughing and allowing close manipulation and contact with basically a stranger – which was highly unusual for her!!!
Intensive 2 (20 lessons):
I took the kids and Grandma and headed off for Intensive #2 in April! Because the travel costs were as much as the therapy itself, we decided to stay for 3 weeks and try one week of lessons – followed by a week off – then another week of lessons.
Again, we noticed AMAZING changes considering this was all in a 3 week time span:
- climbing onto a high recliner chair and into her stroller by herself (hadn’t done this before)
- reaching for and grabbing the pull cord on the bus, holding it in between thumb and pointer webspace (new behavior)
- she started getting wiggly/squirmy – wanting to walk around, lunge over me, be in motion. This was unusual for her, as she had always been quite sedate and content to sit still in one place for a long time.
- she started jumping with 2 feet off the ground
- spontaneously reaching up and putting both hands behind her head, and reaching and holding both feet
- started trying to climb all kinds of things
- improved gait again, so much so that gait was just as good without AFO as with so we stopped using her AFO
- pointing with whole right hand
- started pushing rt arm through the sleeves of clothes for the first time
- trying to climb stairs on foot for the first time
- walked backwards for the first time
Intensive #3 (19 lessons):
We headed back to California, in September. The changes thus far had been so amazing that we just had to continue with ABM! Because it had worked out so well last time, we again planned for one week of lessons – one week off – another week of lessons.
We also planned some MNRI (Masgutova Neurosensorimotor Reflex Integration) lessons, but I will do a separate post about that!
This trip wasn’t so successful. First of all, E was sick with a kidney/urinary tract infection which was initially misdiagnosed, so she was feeling miserable and we were trying to negotiate through the US medical system. She got this infection within the first few days we were there (note to moms with little girls, DON’T USE BATH FIZZIES!!!), and then it recurred, so she was basically sick most of the 3 weeks. Also, we WAY overbooked her with lessons. The ABM practitioner did double lessons (instead of 2 lessons a day with a break, he did 2 lessons a day back to back – i.e. 1.5 hrs continuous – every day. This was WAY too much) We also had a new practitioner doing MNRI lessons five times over the 3 weeks.
Retrospectively, I felt really badly how this went and wished I would have had the foresight and courage to cut back lessons or at least change them up a bit…. but at the time, I knew the practitioner was making a special exception to see us and we had basically spent our life savings to be there, and we were just trying to get through the days with appointments, phone calls to insurance, Dr. consults, fevers, and allergies – all while living in a hotel room with a 1&3 year old (and no vehicle).
We still noticed some good changes:
- her stamina for walking was WAY up. She was able to walk much farther than ever before, and much quicker
- climbing more and doing more “daring” things – better balance
- requesting to walk instead of wanting to be carried or in the stroller
- started walking down stairs (before had been too scared), holding onto the railing (occasionally)
Intensives #4, 5, 6:
Finances limited us to staying close to home, so we found a new practitioner who was willing to travel to our house to give E lessons (provided we organized other families to get lessons at our house as well). This worked out awesome – much easier than travelling on planes and staying in hotels with 2 toddlers!
We had 9-10 lesson intensives three times over four months. During this time we noted:
- better balance
- notieceably increased range of motion right arm
- much more consistently walking down stairs holding onto railing
- started walking UP the stairs using the wall as support (no railing) during intensive #5
- started using both hands to do DIFFERENT tasks at the same time, for the first time. i.e. eating with Lt hand, using Rt hand to wash tray with a cloth
- walking forwards while holding a big ball between both feet
UPDATE September : Intensive #7
We had one last intensive in August. To be honest, we didn’t really notice any changes from this one. Things had been pretty consistent over the last 6 months or so, very slow and steady progress. It just seems that ABM isn’t really touching balance, coordination, and gross/fine motor skill issues for us anymore.
ABM did some amazing things for E, particularly at the beginning, and we saw some great gains. We voluntarily stopped most PT and OT and did a year and a half of ABM intensives exclusively, then another 6 months of ABM with adding in some at-home CIMT. In the end, we will have done about 90 ABM lessons. I say “in the end”, as we are deciding to discontinue ABM for now to pursue other avenues.
I am REALLY glad that we tried ABM. Sure, it would have been better to do ABM when E was younger – I think an ideal age is about 4 months to 3 years, when movement patterns are really emerging. Once E’s walking was well established, it seems that we started to notice only very minor changes. Any gains are great, BUT… ABM is not free and so we had to weigh out the cost/benefit!
I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad). I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control. You are already a part of this story, whether you know or believe it or not. While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny. Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.
“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)