My priority for my son was to be a part of the community around him. A child’s social learning is about how to be a friend, how to care for other people, how to be part of a group. It’s a very complex apprenticeship that we somewhat expect to just happen. There are built in learning opportunities like extended family, or school but most parents unconsciously understand their babies and children need social contact so they have play dates, form play groups, enroll their children in nursery schools, sports, and extra curricular activities. I knew it was important for my son to have as much social contact as possible.
Being around peers enables children to learn and practice the interactive skills they will use as an adult. They learn to share, to take turns, to respect other people’s property and space and the dynamics of give and take in a relationship. Skills learned and observations made in the family unit are tested to see if they apply in this new situation. Who is in charge? Who makes decisions? How do friendships form and continue? Hours and hours of experimentation and testing go in to their exploration of relationships with peers.
A child with a disability is at risk for not having the opportunities to learn the social skills we take for granted. Physical limitations can make it tough to keep up or join in. There can be similar problems with limitations in communication, vision, understanding (cognition), emotional development or even just the energy level to keep going with the others. My son had limitations physically, in communication, and in energy. He also spent a huge amount of time in therapies. That might be considered a time limitation.
My vision for my child was that whatever the outcome of therapies was, he would be able to be a happy, productive person in society. Whether or not he could walk or talk I felt that engaging with other people was the key to a happy satisfying life. I would have gladly continued to assist him in whatever way he needed me forever, but I knew what independence would feel like and I wanted that feeling of power and autonomy for him. I understood early on that being in a restrictive environment might be hugely helpful for SOME of his needs but would not take care of ALL of his needs. The only way to learn to engage and interact in society was to learn people skills and practice them as a child. He needed to be around peers who would become the adults that he would encounter in a community.
So, I started my son in a regular preschool at the same time he started the special school where all his limitations would be accomodated and he would learn computer skills he would need in kindergarten. Two days a week I would take him to Miss Margie’s class where he became part of the group, made friends, and participated in the pacing and flow of those typical child activities. He spent one year in a special kindergarten continuing to refine his technology skills but that teacher also merged her class throughout the day with a typical kindergarten class. Don left the special supportive setting and entered a regular first grade class the next year. He had an “itinerant teacher” who travelled around the district checking on special needs students who were enrolled in regular classes. Everything went well until we neared the end of second grade. Don was struggling with reading. We now suspect that he has damage in his left cortex that affects the centers he needs for reading. The special teacher was coming in to class to give him one to one assistance but I knew that he did not have the reading skills his peers did to move on to third grade. I asked Stephanie, the specialist, what was going to happen.
Stephanie Ingnatenko taught me about remediation and compensation. She explained that when there is a limitation there are two approaches possible. One is to remediate, to help the person gain the learning that is limited. The second is to compensate, to find some way for the person to not be so limited by the lack of learning. The one on one reading help Don was receiving was remediation. The Anat Baniel Method focuses on remediation. Most surgeries are remedial. Brain Fitness software is remedial. Having Brail books for the blind is compensation. So are wheelchairs, walkers, crutches, electronic talkers, audio books, etc. Remediation is focused solely on building the learning that is limited. Compensation is focused solely on making sure that the limitation does not interfere in other arenas.
Stephanie explained that Don understood the science, history, english and math curriculum perfectly. He could not do reading assignments and taking notes was a very energy intensive long process. He would have compensations so those two limitations should not keep him from moving forward. We weren’t giving up on reading, there would still be remediation with a reading specialist, but Don would move on to third grade with his peers.
The classroom teacher chose a “reading buddy” for Don each week. It was a very coveted position. These were NOT always the best readers, but what better motivation for another student than to be the “special” person who got to read aloud to Don? Wow. I was so impressed. In one action Don became part of the group, had his need taken care of, and the other students benefited too. In later years other students used carbon paper to make him a copy of their notes they were writing, and in college he gets regular emails from someone in the class with their notes.
Some tools combine remediation and compensation when they assist with a limitation but also contribute towards building that same skill. There are AFOs which are compensating for a limitation in the ability to use the foot and ankle, but are also designed to give the child an opportunity to continue to learn. The Kidwalk walker (dynamic stander) has features like the weight shift mechanism which allows the child to shift weight side to side during movement, and the swivel self centering seat which allows the pelvis to turn from side to side during walking. These features help children gain skills toward walking independently while the Kidwalk provides the ability to be upright and move for those that can’t stand and maintain balance yet. Augmentative communication devices (talkers) compensate for a child who can’t yet speak, but also allow for language learning because the child has the opportunity to experience communicating and using nouns, verbs, etc to put communicate thoughts.
Parenting a special needs child does not come with a guide book. There is no model to follow. Even if in the past another child grew up with the same limiting condition(s) it does not predict the path or outcome for your child now. Learning is based on experience. Technology changed that opportunity for experience for my son. New inventions like the cutting edge walkers and AFOs are changing the opportunity for other children. New ways of working with the brain are changing children’s experieinces. Being aware of whether remediation or compensation are used can help parents to see the big picture of their child’s experience and help them to make informed decisions. Parent’s can question, “is this helping my child have more experiences?”, “is it creating more limitations in the future?”, and “is there another solution which will both remediate and compensate?”.
This is Part 3 of the Brain Gut Connection series. It is my understanding of the impact of nutrition and genetics in children with special needs as explained to me in conversation with Elinor Silverstein. 
Here is Part 1 of my understanding of the impact of metabolism and nutrition for special needs children based on my conversations with Elinor Silverstein.
Dr Hyman is a functional medicine doctor who writes repeatedly about the impact of metabolism on health. He helps many children and adults by addressing this foundation and making sure that their body has what it needs with supplements and tests to identify what is NOT working. Tests for specific genes shifts can explain why some people are more likely to have deficiencies or mitochondrial disorder which affect their ability to produce energy or detoxify.
Here’s what Anat Baniel has to say about Dr. Hyman’s insights on her Facebook wall:
I’ve spoken extensively with Elinor Silverstein about this relationship between brain, body, and metabolism. Elinor’s knowledge comes from her background as a scientist with Biology and Zoology majors, and Pre-med and Pre-vet minors from Cal Poly, training as a practitioner with Moshe Feldenkrais, and her continuing study of nutrition, genetics and visceral health. She has a unique ability to help children with special needs and is a huge resource for families and practitioners. Elinor spoke in detail about the gut-brain connection, the importance of methylization, and her nutritional recommendations. I will be posting articles about our conversations soon.
When I found out my son had cerebral palsy I had no idea what it was. I happened to be in the intensive care nursery having a quiet chat with my husband when two doctors walked in. Don’s little incubator was one of their stops. They didn’t know we were attached to him. One said to the other “oh yeah, he’ll have cerebral palsy”. Wow. We went across the street to a restaurant and stared across the table at each other. I remember asking Don’s dad “do you know what cerebral palsy is?” and he said he did not, but he had a friend in grade school who had been in a wheel chair and passed away after a few years. 
Babies don’t do much at 1, 2, and 3 months. When awake he was alert and seemed to be doing what my daughter had done. Yes he was a little stiff and we could successfully prop him up in standing…what can I say? We were new to this. I remember being heartbroken that I had to let him cry to sleep the first few weeks, but no matter what I did to comfort him I wasn’t helping. But lots of babies have trouble going to sleep, right? Now I know these are clues to damage in his brain.
At three months our pediatrician was not happy that his hands were still fisted tight with the thumbs inside. No diagnosis, but enough concern to send us to a Kaiser pediatric physical therapist. We learned to prop him up on his stomach. He was also arching back so well that he could roll himself from his tummy to his back. At Don’s 4 months old visit the pediatrician said “Well he’s not rolling over, of course”. “Yes he is” I was proud to say and Don demonstrated. That’s when we ended up referred to the state agency, California Children’s Services for therapy. Ok. Arching is NOT normal.
That poor therapist that did the intake for Don. She tested, wrote up her report, and called me in to let me know the results. When she said he had cerebral palsy she had no idea that I had never been told. Cue tears and LOTS of questions. She excused her self and practically ran out the door to get her supervisor. I remember asking “will he walk” “will he be able to play and have fun?” “will he live very long?”. We were scheduled for occupational and physical therapy to start the next week.
Tarella – A special tail – Saying goodbye
During our time living together, myself, Jamie, Don and Tarella, we trained more and more skills. I think she had close to 100 commands. She could take off Don’s sox and jeans, put them in the laundry, and run the wash – oops not that last one. But the “sock” command and “laundry” command were a couple of her favorites. One night she went into action a little pre-emptively. I turned around just in time to see Don airborne as she jerked so hard on his jeans that he sailed through the air and landed on the ground. We fell all over ourselves laughing. I’ll never forget sitting at opposite ends of the house teaching her to bring things to each of us. “Go to Mom”….”HERE Tarella!” and I could hear the toenails as she ran through the hallways tracking me down to deliver the pencil unmarked and with just a tiny bit of spit. We knew she wasn’t always angelic, Jamie’s hair ties and stuffed animals paid the price, but she was our angel. She brought us together, brought us into the amazing group of people that make up Canine Companions for Independence, and was there for Don every minute of school, rest, illness, hardship and joy. Life was hugely improved having her alongside him.
It was very tough for Don to decide Tarella was ready to retire. She’d taken to letting him know she clocked out at 5pm, but he could work with that…it was the fears that came with losing her hearing and eyesight that made it time. Riding in the van was no longer a treat, it was something that made her shake with terror no matter how we tried to make it ok. We even fed her dinner as we were driving. Nothing helped. So, Don petitioned to CCI for a second service dog and prepared a retirement home for Tarella with his Dad. There was a brief glitch when she came back to him again, then he graduated with his second dog, Lee. A few years ago she settled in to retired life with Jim and Lisa. When they bought a vacation place by the lake (where Jim spends most of his time fishing) she fit right in. I heard stories of her riding on the golf cart and running through the woods. She had the prefect doggy retirement. Lots of love and fun. When ever Don would come around she’d position herself right next to his wheelchair. If Lee was there she’d just take the other side. He had bookends. But she was just as happy in retirement to grab her favorite stuffed toy and settle on the bed by the fireplace as he left.
We were so fortunate to have some wonderful teachers in Don’s early years. He started pre-school at 3 years old in order to learn how to use an AAC device. AAC means alternative augmentative communication device or as we called it, the “talker”. I chose his school because Cheryl Garavalia, the preschool teacher, had obtained a grant to pay for talking machines and training so her students could learn how to use them. Before he even entered school Don was tested and his device had been ordered.
I felt so strongly about this that when Don started at his special preschool where he would learn to use the talker and computer (at 3 years old!!!) I also started him at a regular pre-school my daughter had previously attended. Two afternoons a week he went with kids with NO special needs so he could get the best of both worlds.
addressed. We quickly learned that if we were pro-active and open to educating others it was a much more positive experience than waiting for the dreaded “what’s wrong with him” question. I learned early on that I was willing to push myself way out of my comfort zone if it was going to make a difference for my child. So, even though I was not an extroverted person, I began walking around with a smile, meeting people’s eyes and welcoming contact from complete strangers. Trips through the mall usually included at least 2 or 3 stops to chat with well-meaning adults or curious children. On bad days I would still charge along with my eyes down, moving fast so I wouldn’t see the looks and stares – but if I could open doors for Don by being welcoming then I was going to do it, most of the time. I later learned that this became a model for his sister and for Don to follow as they dealt with these issues independently as they got older. It was worth the effort.
It’s been such a pleasure to meet so many families and children. I am endlessly impressed with the dedication parents have for finding solutions for their children with special needs. I remember being told that I should just go along with what the teachers and other professionals were telling me was best for my child. I even recall a doctor telling me not to listen to anyone with “new” ideas because they were just preying on parents with special needs children. The message they were sending, “There is no hope”, was one I was not willing to hear. They wanted me to believe that they had the answers and my son could achieve nothing more than their predictions. Well, I am so fortunate that I also had people with vision, intelligence, and love giving me concrete ideas to make a difference for my child. It was my job to keep searching, to follow through, to be his advocate and educate myself about what my son needed in his life. 
Neil Sharp hosted a wonderful Sunday afternoon in San Francisco this weekend and it gave me the chance to meet another mom. Our talks reminded me the impact reading