Hope & Intention

In Kevin’s November Revisit Report, I shared some discouraging feelings I have been having regarding his progression.  Here is what I wrote and what we discussed with FHC to put my mind at ease to encourage me along and get my motivation back.

Kevin was one and a half years old when we discovered Glenn Doman’s “What To Do” book.  This book answered our questions and gave us so much hope.  We immediately began patterning and went to IAHP a couple months later and spent three years with them.  During those first few years, I was intensely focused on getting Kevin well.  We set our goals and worked hard and Kevin learned to crawl, creep, and walk.  We set a goal and we achieved it. For some reason I had in my head when we began this journey that Kevin would be walking by the time he was 5 years old. And he did, but in my naïve mind, walking equaled well or at least close to his peers.  I am so grateful for the walking that he does and can do (for a boy who was never supposed to walk), but I thought that getting him to walk was going to be the hard part.  We were with IAHP a year or so after Kevin began walking and then switched to FHC, where we continue to work hard but also enjoy life and family time.  But every year that Kevin gets older my hope that he will catch up to his peers loses faith because he is getting further and further away from his peers.  I want to stay strong and positive for Kevin so that I can continue helping him progress. I was so grateful for the swimming experience that Kevin had on his birthday because it does stir a bit more hope in me, and give me verification that the work we do is doing something.  But I am still feeling like maybe I need a shift in my thinking.  Do I continue believing and hoping and intending for Kevin to catch up to his peers?  When I allow myself to think of the possibility that he may not catch up, it makes me feel like I need to accept his disability all over again in a new way, which is probably reality to most.  I try to not allow the doubtful feelings to consume me, by focusing on all the happy moments we have every day, here and now, but the doubt does sneak up on me sometimes and I feel like it may be something I need to deal with.

Please do not misunderstand, I am not giving up on Kevin, but doing the program for the last 6 years we have kept ourselves in a protected bubble here totally relying on our friends in Philadelphia to guide us along this journey.  I feel grateful and blessed for the progress that Kevin has made since we began the program.  We are so grateful and happy with FHC and I am still not ready to give up hope and the Hope Center but if this is going to be the world we live in I feel like I should stop avoiding and denying where Kevin truly is and not where I hope him to be one day soon.  I feel like I should be aware of what is available to Kevin in our area. I thought Kevin would be catching up to his peers by now and I have avoided the developmentally delayed county services because I thought we would not need them.  Now I am feeling like I should get him in the system because I am not aware of the services available to us and what happens later in life.  I feel in a way that I am giving up on him by doing this but also I feel like it could be foolish not to be aware of the services offered and to be prepared for later in life.  Also, due to the set back in walking that we have had, I am beginning to wonder if we need to consider buying some kind of wheelchair stroller.  We have been getting by with a toddler umbrella stroller or wagon for when we go someplace that has a lot of walking. But the stroller is getting too small for him and the wagon is not always convenient to take to some places.  This is something I have been avoiding because it helps me deny where Kevin truly is and not where I hope him to be one day soon.

Based on Kevin’s evaluation chart, it feels like he is continually falling backwards because he has not had neurological growth as fast as or faster than his chronological growth, since achieving his walking goal at IAHP.  So if he has grown chronologically 6 months, he may only have grown 2 months neurologically since his last 6 month evaluation.  This minimal progression on the evaluation chart is causing confusion and frustration for me and not only that but also the big steps back we have had to take in regards to walking and reading.  Kevin read all those books and 10,000 bits with IAHP and I feel like I have no idea where his intellectual ability is. I understand that this is so we can lay a better foundation, but it is frustrating to not see much progression on the chart and then have these 2 big things taken away.  I know Kevin has made progress since he began to walk and since we switched to FHC and they are important skills that have made life better for all of us.  But since the crawling, creeping, walking goals I feel like our new goals are not as specific and make me feel unfocused and I am losing confidence in myself. I feel like I need an intention to set my goal on for Kevin.  If my intention were clear and specific would we progress more or is this next stage after crawling, creeping, walking just different?  I understand the evaluation chart and understand that the next task would be our intention but it just seems different from when we focused on the crawling, creeping, and walking.  Why do these goals seem so different? I know we have to take it one step at a time, but what is our next landing? What should we expect to get out of this? 

So after meeting with our favorite brain experts at FHC, here is how they eased my mind and helped encourage and motivate me. This is a marathon journey we are on, it is not a quick fix.  He is making slow but steady progress.  Based on the Integrative and Developmental Progression Chart, Kevin’s neurological age is still about a 2 year old.  He has not achieved all brain function in the 6 levels of brain function that includes birth to 3 years of age and the next level encompasses a 3 year age span for 3-6 year olds, so of course it is going to take even longer for Kevin to make that 3 year jump into the next brain level.  We also discussed focusing on reading; they feel our time is better spent on other developmental tasks to help organize his brain.  They feel like it is unconstructive to have the ability to read at a high level but not be able to function in society and not be able to use the information that you are reading about.  We also talked about the facilitated communication.  They discourage using it, unless the parent is confident there is no influence, which I was not.  They find that by using sign language to communicate with others they have to develop those interaction skills that include eye contact and being engaged with others.  Also, the fact that learning sign language stimulates the brain in the same way as speaking language which will help his brain to develop verbal communication. Those crawling, creeping, walking goals that we accomplished are different because they are quantitative and can be easily measured unlike communication, understanding, sensation, emotional, and social.  And we continue to crawl and creep because it continues to organize the brain.  Before our revisit I had already begun the process to get Kevin into the county developmentally delayed system, which FHC agreed was the right thing to do.  I feel encouraged and understand the process a little more clearly.  One of the things that made me feel really hopeful was that they envision being able to introduce Kevin into a classroom type setting for a short period of time, possibly in 2 years. I got my MOJO back!