Anat Baniel Method
Our therapy journey began in New Orleans after Robert’s discharge from the hospital and our arrival at Harch Hyperbarics. Conventional speech/physical/occupational therapy were unavailable to us as ‘new patients’ with the average waiting time for a first appointment being five months. We were introduced to Andy Chrestman and the Anat Baniel Method (ABM) by another patient of Dr. Harch’s. Andy is an attorney and the father of a special needs son and had just completed his ABM training. While he trained primarily to benefit his son, he was seeking experience and, at the time, offered free sessions to Dr. Harch’s patients.
Andy gave us one of Anat’s books and it made sense and explained much of what we saw with the therapists in the hospital. While the therapists in the hospital were wonderful, caring people they were trying to get Robert’s body to do things his brain wasn’t ready for. They would work on him for hours for tiny gains only to have him revert immediately after they stopped. Ultimately, they were suggesting braces, splints and surgeries to keep Robert’s body from hurting itself. Robert had a neck brace while in the hospital due to a resuscitation injury. As predicted by Anat in her book, his neck became incompetent and was the first battle we had to fight on ‘the way back’.
Once home from New Orleans we found Alisa Franklin and continue to do ABM intensives with her as schedule and funds allow. We can’t say enough great things about Andy and Alisa. If you do visit Andy, make sure you request a consult from Dr. Gaston. ABM therapists are located worldwide and can be found listed on the ABM website. www.anatbanielmethod.com
Our one complaint with the Anat Baniel Method is that it is therapist led. With limited funds and no close practitioner we began looking for other options. (Alisa practices an hour and a half away from our home.)
Neurological Re-Organization
Our next stop was Neurological Reorganization (NR). This is a primitive reflex based method similar to MNRI and compatible with ABM. NR is entirely parent led with only occasional consults with an evaluator/therapist to provide direction and new exercises. We ultimately abandoned NR as we felt we needed more structure and guidance and had trouble communicating reliably with our therapist.
Masgutova Neurosensorimotor Reflex Integration
We are in a number of parent groups for brain injured children. Within these groups, the Masgutova Method (MNRI) was repeatedly discussed and the results were reported to be nothing short of amazing. Basis these recommendations we looked up Sharon Heller on the MNRI website and scheduled an intensive. Sharon lives more than three hours from us so we were limited to intensive visits. (6-8 appointments in a 3-4 day period.) The results were encouraging and in April of 2019 we attended our first conference at the MNRI headquarters in Orlando.
Our first conference was a PTSD conference recommended by Sharon. When we arrived in Orlando, Dr. Masgutova evaluated Robert and asked us for a reasonable goal for the week long conference. We wanted Robert off of his feeding tube so that he could move with more freedom and hopefully begin crawling. On day four of the five day conference Robert took his last tube feeding and has been 100% mouth fed since. His feeding tube was removed two months after the conference.
We attended the first MNRI Non-Fatal Drowning (NFD) conference in October of 2019. This conference was used to train MNRI practitioners and families in specific exercises for the problems common among drowned children. It is our intent to attend the Second NFD conference in October of 2020.
As part of the conferences, parents are sent home with a binder of prioritized exercises based on their child’s observed condition at the conference. We use this for regular therapy with Robert. We also continue to see Sharon for intensives and use Megan Williams for weekly therapy and evaluation of Robert. Megan is a speech therapist training in MNRI and practices in our home area. MNRI therapists are located worldwide and can be found listed on the MNRI website. https://masgutovamethod.com/
While we love all of Robert’s therapists, MNRI, as a group, has become like family. There is a passion and a community that surrounds MNRI. Robert is not just another patient. During the first NFD Conference, we met families we had been corresponding with for months. It was like a sad and hopeful family reunion with people we’d never met. When we asked the Institute if we could stay late one night to fellowship, Dr. Masgutova not only immediately consented, she arranged for our dinner to be brought in.
Speech Therapy
When we arrived home from New Orleans we attempted to get Robert enrolled into one of the local hospital based rehab therapy centers. Our application kept getting ‘lost’. We finally called a friend who worked for the associated hospital and she did some checking for us. Our application kept getting put to the bottom of the pile as we had ‘private insurance’. Apparently there is too much oversight and accountability with private insurance and the hospital preferred Medicaid (government paid care) patients as there is ‘no oversight of what is billed’.
We were able to get Robert into conventional speech therapy with a local private clinic and had good success but eventually ran out of support from our insurance. This coincided with our discovery of MNRI and our successes there so we stopped this therapy.
Functional Neurology
In addition to MNRI, we are pursuing regular visits with three chiropractors. I will develop a separate post to describe their methods and successes.