Welcome to Benjamin's Web Page! Richard and I invite you to keep informed. This web page has been provided to keep people updated about our sweet baby boy, Benjamin, who was born on September 12, 2002 with the severe form of x-linked, myotubular myopathy.
(Please take a moment to view his photo album and don't forget to sign his guestbook, too!)
And, please visit Benjamin's Quilt of Love: http://quiltsoflove.com/quilt_2004/benjamin_EG/benjamin.html (there is a link to his quilt at the bottom of the page)
Hello!! Can you believe it? An update after more than two years- whoo-hoo, mom's really on the ball now!! What can I tell you? A lot has gone on in the past two years...
Benjamin has begun cooperating... some, and for this we are so greatful! It's hard enough to have a non speaking child who can't move very well (with everyone assuming that he KNOWS nothing). But, with Benjamin, it can be a bit more complex. Benjamin has a VERY strong will- he's JUST like his sister- (I wonder if he has ADD, too? ARGHHH!! More complications!) Anyway, he can outwait (and outwit) anyone. He will not stop trying (for hours, if need be) to call your bluff, and at the same time, he will hold out for what seems like forever (for days, if need be) to resist us. He is a real piece of work! I'm telling you, we are reliving LeeAnn's early childhood years all over again- it's amazing.
Needless to say, his school district has no time for this sort of folly- after all, he is in PRE-SCHOOL. (I mean, they have REALLY important things to do in there, like naming all of the Presidents, for crying out loud!). So, the school psychologist has "tested" (i.e. "filled out a questionaire about him") and has decided that she wants to re-label his disability category as MR. (Nevermind that the "test" was developed to score a child's PHYSICAL abilities in order to approximate their COGNITIVE development. Oh, yeah. And, nevermind that Benjamin was born with a congenital myopathy (type of Muscular Dystrophy) that leaves him so substantially weakened that he is unable to walk, crawl, get up by himself, swallow consistently, and needs assistance to blink and to breath. To the district, these are just minor details... the fact of the matter is that he FAILED this "test" and so, naturally, this must mean that he has a vast cognition defitcit.) Tomorrow, my husband and I must attend another one of those lovely ARD meetings (a meeting with the school required for children with special needs). In this meeting, we plan to explain politely to them that there's NO WAY that we will accept that label for him, and to also negotiate to get him the things that he still needs from them but doesn't have,yet. I definitely need extra prayer support for this- they easily sway me off of the subject and sidetrack me onto other issues (maybe I have ADD,too?) I want this all to be resolved in this one meeting because, frankly, I get tired of hashing and rehashing the same issues in all of these continual meetings. Why would they strive so hard to keep him out of regular classrooms, yet not take the effort it takes to meet him where he is at and help him along? I have thought about that for a long time, never understanding- until recently, that is. I think that the reason that it matters, is because of 2 things: time and money. If they put him in a regular class, it will take more time from them than they are willing to spend, and eventually (once third grade rolls around, especially) it will cost them money, as well. Third grade happens to be the first year that Texas school children are given the (thereafter) annual State-administered standardized test of skills and knowledge. All school districts cater to this test, because passing scores mean more government funding for that particular school. Imagine the difficulties that they would face by having to adapt to Benjamin's particular needs! It would be much simpler (and more financially sound) for them to just put him in a classroom where they aren't required to test the chidren. This is my theory, anyway. Maybe it is really all just some big test that I am going through... God only knows. I only know that I have a keen understanding of what is going on with Benjamin and it isn't backed up in any textbook, and I can't get anyone to believe me, to listen to me, or even to check it out for themselves. This is SO VERY DISCOURAGING. I know my Redeemer lives, and I rest this in His arms now.
Benjamin got a video game system (V-smile) for Christmas, and he LOVES it!! It's so funny to watch him with it- he loves to make the little boy JUMP all day long. It also comes with a microphone. I thought that he really loved the game system, until I saw him with the microphone. He is so cute with it!! It has really helped him to vocalize a lot more, too. I can't wait for his speech therapist to see him do this!
Benjamin is COMPLETELY full of laughs, and smiles, and tickles, and love, and joy, and mischief!! He can get anyone to do anything for him- how smart is that?!! I love him so much, and I cannot get enough of his love and his spirit!! He and his sister brighten my life and heighten my appreciation for them. They are so delightful to behold!
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