That my dear people is the question. See, I can say people. According to my stat counter, I get about 60 hits a week here on this little blog. I don't have that many family members, and I don't keep reading it and posting more that often either, so there are those out there who ARE reading this insanity.
Yesterday I received an annonymous comment. It's under the "The (Not So) Chosen One" post. So I responded to what she, I'm assuming it was a she, said. And then she left another comment. She's right, I don't know who she is, however I would like a name to associate with the comment.
When I read the first comment, I perceived it as she was bashing my husband. When my friend Jenn read it, she perceived as pity for James and his disability. When Jason read it, he said simply "I like James as much as I can like him. Some days that's more than others, however that goes the same for ALL the kids" Which is quite true.
I've never fully explained what James' "issues" are. So maybe it is mis-perception on the part of the commenter about the actual situation. She called it "sad".
See, I don't see my life as sad at all. Trying, frustraing, angering, yeah, those all fit. Joyous, happy, celebratory, yep those too. Hurtful. Enough to make you want to cry yourself to sleep some days. On other days, you just want to throw a party in celebration. Isn't that how EVERYONE'S life goes though?
Now about James. The commenter also mentioned his "developmental disorder". I can see how she could have that mis-conception. After all, I've never explained All About James. So let me do that now. I'll list off the disorders and then I'll explain the, k?
ODD (Oppositional Defiant Disoder), ADHD (Attention Defeceit and Hyperactivity Disorder), Severe Sleep Disorder, SID (Sensory Integration Disorder) Mod-Severe, Mood Disorder NOS (Not Otherwise Specified), Severe Short Stature, Borderline Asperger's Syndrome, RAD (Reactive Attachement Disorder) and he has poor body (all of his body) control.
OK, what does all of this mean. Well the disorders you can look up yourselves. WebMD has a good write up on the basics of both ODD and ADHD. For the RAD, go to http://www.radkid.org/. What you'll find is that with the combination of the ODD and RAD make for a very argumentative and defiant child. Hell, part of the name is defiant. As far as the Doctor and I have been able to figure, the RAD came about from an extended time that James spent with his father where he was fed, kind of, and taken care of, in the barest sense of the word. That's the stark reality of the situation folks, no hiding under the blanket on that one.
James doesn't sleep unless he is medicated. I have really bad insomnia myself, but this is a step further. It's common for kids on the Autism Spectrum to not sleep. Autism? I don't see no steenkin' Autism on that list. Well, no, you don't. You see things that are ON the SPECTRUM. Borderline Asperger's (and the only reason it isn't full Asperger's is because he behaves differently at school and the teachers never see ALL of James) and ADHD are both on the Spectrum. Which means they have aspects of Autism. Sleep disorders, obsessions, ticks (also known as Stimming), and social interaction problems are all there.
James can't be boiled down to a bunch of labels for you to understand him. By the way, the Mood Disorder is a nice way of saying he's suspected of being Bi-Polar. However, a child can't be diagnosed with Bi-Polar until they are a teenager, I'm not sure why this is, but thems the rules. I could sit here all day and write a very long and drawn out post about James and his disorders.
I want to make this clear however. There isn't anything "developmental" in the delay department, in the disorder department, that is going on with James. Academically, Physically (aside from his size), Mentally he's all "developed" where he should be.
There are some out there who would say "take him off the meds, let him be who he is fully". Well, here's the beauty of this, he's MY kid, not yours. We choose to medicate. We have also recently reduced his medications. I don't know if he'll ever be med free, that will be a choice he'll have to decide on when he becomes an adult.
We are homeschooling because of who he is. I understand, from my many years of interactions with the schools, that no matter what they come up with, he will ALWAYS have problems. There will be no "just getting by" for him. I causes him upset and frustration, and me too. Why put both of us through that?
I think that I've just made things clear as mud. Oh well. Just don't tell me my life is sad. Or the situation is sad. Or that James is sad. That's just not the case. Until you have lived a day in these shoes, your perception of our reality will always be, just that, a perception.
And in the immortal words of Forrest Gump "that's all I've got to say about that."
8 comments:
Jamie - I've been keeping up with your blog....i was once a part of the March Mommies board (monojdl), but couldn't post enough and got kicked off (no hard feelings, just the facts - tho' i really do miss being a part...) As a person whose unofficially "known" you since you were pregnant with Izzy - I think your post is lots of things (read: emotion provoking), but certainly not SAD. I think the poster who gave you that message just didn't read enough to recognize the honesty and emotion of who you are...as your self description indicates you are a woman on a mission...to live fully, learn more about yourself and to be the best mom, wife, friend, mom, mom, mom you can! Kudos to you, my friend!
thanks monica, i appreciate it!
Im sorry but i really think you misinterpreted what i wrote. i never said your life nor james' life was sad, simply that the situation is sad. it really IS sad that james has so many issues and its sadder (at least to me) that an adult (your husband) who has a better capability of understanding these issues better than james, would not like him very much.
For what its worth (albeit its not much) i am not a female. just a male with a more sensitive side, i guess.
maybe i should make it clear that there are days where i don't like james very much...there are also days where i don't like my other children very much...it's just how it works some times...my children are NOT me, and therefore, we have personality clashes..it's just how it goes in any long term relationship, whether it is parent and child, lovers, friends, or co-workers...i know there are many days where my children don't like me much...whether i've told them to clean, do their schoolwork, or do their chores, if it's something they don't want to do, they don't like me for making them...i don't see it as sad, i see it as the way that life is...you make the best of it, simple as that
I've been keeping up with your blog as well - I guess you probably already knew since I do comment occasionally.
Anyhow, sorry they didn't understand. I thinks it's hard to understand what it's like to deal with a child like James unless you have seen something like it before. It is strange that they're unwilling to give any name for themselves.
I admire the attitude you have towards all the things you deal with. I think most people would want to curl up in a little ball and hide (including myself!). Happiness is a choice - not something that happens to you!
I'm not quite understanding what the issue is that i haven't posted under a "name"... Would it make a difference if i said my name is anthony? michael? jerry? no. i would still be some anonymous person from the net commenting on this blog.
my apologies, serial mommy, as i guess i misinterpreted your blog. when you said your husband did not like james very much, i took it to mean something else.
Dear anonymous:
I do believe it does matter what your name is. Just the fact that you would be willing to identify yourself means that you're not hiding behind a monicer, but willing to stand up for your beliefs.
I know Jaime and her children personally and I have never found the situation to be "sad" maybe frustrating, maybe annoying but never sad. Her children especially James give me courage to realize that If someday I am blessed with children that no matter how it turns out or what it gives me I will be able to draw strength from Jaime and what she goes through every day. Believe me when I tell you, James is difficult but also very funny and loveable. He is a child that one day you love being around and the next you want to throttle.
Jason is a great dad and I understand that somedays he likes James and others he doesn't, but that is par for the course. I am sure their are days when the people in your life get on your nerves too.
Fyi,
You have no idea what it is like being a parent to James. It's very nice of you to think he deserves a better father. I'd like to see you do it for a week, Mr. Sensitive. James does not look on the bright side of life, and any comment from him is not a welcome bit of information. He is very opinionated and hurtful. The only nice things he ever says are for his own personal gain. Interacting with James is like...imagine meeting the "only person on earth." Either you are there to serve him or you are an an obsticle to be overcome. Not another person. Not someone who can be percieved as a mentor, teacher, or even equal. You are nothing to him. If he cares about you you wouldn't know, because he does not communicate this. He does not empathize. I can empathize, and I know his life is one of solitude. I don't pity him that, solitude is comfort for him. He doesn't understand what people expect of him, he doesn't understand anything than the most obvious indicators of emotion. He does not rationalize what other people may feel or think, either from a lack of ability or caring. I know you may think "so what? all kids are like that" but this is so much more than any other child is like (and I've been around enough to know). I do my best but I never claimed to be perfect. If you have a problem with that, you probably never had to care for a child .
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