We have been home now for a few months since our 8 day MNRI Conference in Orlando. I am still recovering. It was intense, to say the least. I met some wonderful moms of other kiddos with special needs, ranging from autism and SPD to traumatic brain injury. It is so neat to actually connect with other moms who are going through a similar situation raising and loving a special needs child (and working so hard to give that child the best chance at life) – it gives me hope and strength. Like someone else is doing this, so can I. I always think it is so amusing when someone says to me, “I could never do what you do. You are such a good mom to Mary Elizabeth”. Yes, I hope I am being a good mom to her (some days are better than others). And yes, you would and could do it too. You would rise to the challenge and do everything and anything within your power to help your child. You would gain and sharpen skills you had no idea were possible, or even within you. You would because we all love our kids. And seeing these other moms who are now extraordinary because of their kids is nice.
Anyway, about the conference. It was 8 days, 6 hours a day of intense learning for both ME and I. Our therapy is broken down into 6 – 50 minutes sessions a day. Each session works on a different aspect of the MNRI Program: Neurostructural, Tactile, Archetype, Facial, Repatterning, and Proprioceptive/Cognitive. Within each aspect of the program are important reflexes that a child has in their DNA to be able to survive and thrive in this world. For example, the Robinson Hands Grasp (Repatterning, Facial) – it is displayed when a baby grabs your finger and holds on. This reflex begins with grasping small objects (finger, rattle, toy) and develops into more complex fine motor skills like the pincer grasp (picking up a cheerio with thumb and pointer finger). If this reflex is not integrated properly (ME’s is not), It can affect handwriting and speech skills later in life.
So during our therapy sessions, the therapist gives ME a proper stimulus (in this case, places her finger on the inside of her hand at the base of the fingers….then does the correct motor response for her. She squeezes ME’s hand shut in a fist and shows her how to “grasp” her finger. And repeat. The idea (in my simple mom terms) is to give ME the proper experience of Hands Grasping over and over again so that it overrides her dysfunctional (even pathological) pattern. Like rewiring (or repatterning) her brain. It is fascinating and very simple at the same time. And it requires a TON of work – repeating the reflex correctly 3 times a day 5 days out of the week…and ME has over 30 reflexes to work on! So my days are consumed with teaching ME the proper way of doing everything, because her brain injury has prevented her brain from doing that in the past. And she is capable of learning the new and correct reflexes – she could never “step” as a baby (you know, when you lean a new baby forward and they step, step). Me would never do that, but she is starting to do that now!! She has “learned” to step! And so I continue her reflexes all day, every day in hopes of ME learning how to walk, talk, etc…in the future. I believe in this program and I believe in my baby girl!
The Family Conferences are our opportunity to let the “professionals” work on ME and for me to learn better techniques, better quality of touch, and more about the brain. They are critical to our success. It is a “break” from the physical monotony of our life and an intense ramp-up of the intellectual and emotional (even spiritual) part of my life. There were lots of tears (mostly by me, not Mary Elizabeth). Tears of hope, of joy, of exhaustion, frustration, and sadness. Mary Elizabeth was such a good, strong girl this trip! She managed to keep it together the entire first three days, and had her first melt-down at the end of hour 3 on Day 4. She did some good screaming, and it was over.
Then she had another scream fest the very last session on Day 8 (I cried). Not too bad for a 3 year old who has had 48 hours of HARD WORK! I am proud of my big girl.
I could not have survived without Christina, ME’s nanny…she was a wonderful helper and a good friend during this trip. I fell in love with our therapists – Jennifer, Sue, Gayle, Boutaina, Lori, Mira, Tina, Ilena, Joan, and Pamela. Thank you ladies for loving my baby girl and giving her such good work – you are changing lives and making a difference. Thanks to my friends and family who prayed for us, sent funny messages when I was low, or just remembered we were there. Life moves so quickly and we all have so many things to do; I am amazed at the people that surround us and love us in the midst of the chaos. We love you deeply.