Finally got to discuss the movie with Brynn, “A Smile as Big as the Moon.” I watched it first to make sure it was something I thought Brynn should watch. Brynn, Brett and their friend that stayed last weekend watched it Saturday night. Brynn has not been to public school yet, so I found the movie to be a good way to show him both sides of what he could possibly face. He has known for some time it’s harder for him to learn. He has heard the Doctors say cognitive disorder, intellectual disability, regression, slow, special needs… but in general he has been blessed and never really been made fun of. He has been embarrassed but not made fun of by other children. Due to the extended seizures we have had to reteach much of what was taught and I realize that he really needs therapies that I just cannot provide him. It is very frustrating to teach him and watch that spark when he “gets” it and watch that spark fade away with a cluster of seizures or worse an extended one. So with this in mind I watched the movie and let them watch. I observed the reactions to the different aspects of it. Sunday evening after the company left, I asked Brynn what he thought about the movie. He responded by saying “I don’t want to be special.” Of course I asked him why? He said “Because special kids get made fun of and I don’t want to be made fun of.” Fair enough… I asked Brynn which child in the movie he thought was more like him… He identified himself with the Down Syndrome child because he was funny and liked to hug. He also identified himself with the Autistic child because he was “big.” I explained that when he goes to the public school he will not stay the whole day, but will go for therapies like speech and language. So yesterday I got my brain all prepared and made the call. I had already spoken with a Lawyer and verified that Brynnon does qualify for services in LA a few weeks ago. So, I spoke to a school counselor, the Special Education Department and the woman that does the Home Bound services… The conclusion… They have never, nor do they intend to service a “Home Schooled” child. Well… Thank you for the reminder why we should all avoid the Public School like the plague… Still considering calling a Civil Rights or Disability Attorney, as under the law he does qualify as we registered under the Private School option in the State… However, at this point I think the risk to his self confidence outweigh the benefits he would receive from getting services through the Public School.
I didn’t say it because I was scared to… but Brynnon went 8 days recently seizure free! Yeah, silly I know but it seemed like every time I would proclaim 3 days no seizures another would come that night or the next. So 8 days is his new record, since his last extended tonic clonic! The month of January brought 19 seizures that I logged. I logged the ones we saw, except for the really tiny ones that are so quick they are easily missed anyway. I would definitely say he has reached a new improved “normal” concerning his seizures. He is making progress again in his AVKO Sequential Spelling as well as his Time4Learning.com work. The iPad has helped him to have fun and learn at the same time. Hard as I try to get him to have fun with other learning programs, he will spend hours working the puzzles on his iPad. Didn’t take long to figure out that he needed some modifications made to his iPad. You tube was disabled, I disabled the browser and added Mobicip for safe internet browsing. Added parental controls and a password too. No sense handing the world wide web to a 12 year old disabled or not! 🙂
Brett is still having those “events” and the plan is still to ask Brynnon’s Neurologist what he would recommend I do next. I think most people would get that you cannot diagnose seizures that happen while sleeping, until you do an EEG while sleeping. Makes perfect sense to me, but the Pediatrician… Not so much! Oh well, we needed to see more Pediatricians anyway… There are so many more left near this town.
Time marches on and usually brings lots of changes with it. Expecting this year to bring many changes, all for the good. I am pretty excited about the prospects for a better life actually… I want us all one day to smile as big as the moon! Speaking of time, I started writing this blog Monday… it’s now Friday… so I suppose I will go ahead and publish it!
Have a Great Weekend Y’all!! Till next time here are some pics of the boys enjoying putting the new bunk bed set up…
New Camera system with night vision! 🙂 See Abigail climbing into Brett’s bottom bunk? LOL