Thursday, December 11, 2008

Mr. Grump and stuff

Poor Finnian. He's been out of sorts the last couple of days and it's really my fault. Or nobody's fault maybe. We've just had to do a ton of running around the last couple of days and it's completely screwed him up. I am realizing that he just does much better when we hang close to home and he gets food and sleep on a regular, predictable schedule. All this in and out of the car and sleeping on the go, it's rough on him and makes him (extra) crabby. Plus, I seem to have trouble nursing him when we're out and about. I've never had any issues - either physiological or psychological - nursing any of my other kids out in the world, but Finn is so darn distractable, and nursing when we're not at home turns into a frustrating venture for both of us, not to mention a peep show. So this results in him not eating regularly like he does at home, which also adds to the grumpiness. I think tomorrow we will try to have a quiet day at home.

~~~

So, about that whole mental retardation thing. I'm still thinking about it a lot. I guess it's just the stage of the process I'm at. It bothers me. And I don't mean the prejudice of other people. I mean, yes, that is definitely an aspect that I have a lot of trouble with. But I guess right now (in case I didn't make myself clear in my last post) what I am having so much trouble with is just knowing that he is . . . or will be . . . or whatever. It's that knowledge. That certainty. Because apparently, from everything I've read, they all are. It just seems so definite, you know? It is definite. (Then, the part of me that maybe is still in denial thinks, "Come on, how can they - whoever they are - say that every single person with DS is mentally retarded? Have they tested every single person ever born with DS? No! So maybe Finn will be the exception . . .")

It hurts my heart. When I try to intellectualize it, I can't really answer why it hurts so much. It does not make me see him as less than, or love him less than I do any of my other children. If anything, I think his having Down syndrome has brought out in me a feeling of fierce protectiveness - which I have about all of my kids, but I think maybe more so with Finn. So I don't know. It hurts to know that he is limited. What those limits might be are anyone's guess, but they'll be there. Doesn't every parent want to believe that only the sky is the limit for their children? Plus, I guess it hurts to know that he may have trouble relating to other people throughout his life - or rather, that other people may have trouble relating to him. Will anyone take advantage of him? That scares me, too. How much will he be able to understand? Will he even understand his own condition? Will he be able to stand up for himself?

This is the stuff I'm struggling with.

3 comments:

Hector and Jennifer Varanini Sanchez said...

Hi!
I'm here in Philly right now with my husband and Joaquin and we just attended a lecture on Friday on Intelligence, Reading and Math for Joaquin and the speaker Susie Aisen who has worked with children with DS, children with brain injuries and well children said in the middle of the lecture that the professionals have it all wrong. "Veras" kids (that is what they call children with DS at the Institutes after Dr. Veras who worked his entire life with them) are the brightest of the kids they see and she says they are NOT mentally retarded....they are so smart that they will often "play" adults and others to get what they want. They are "awfully" smart at times becoming a behavioral problem because they know how to get what they want. The Veras kids they work with all read, write, have great encyclopedic knowledge, learn amazing manners and can do perfect math. Can I tell you it was like drinking a glass of ice cold water in the middle of the desert? It was amazing to sit in the room and here this, so comforting, so inspiring. We can't wait to work on our program with Joaquin :). We meet with the staff on Monday and Tuesday to get our intensive treatment program and then home to California on Wednesday. I'm going to blog about this later this weekend :)!!!!!!! Hang in there!!!!

Hector and Jennifer Varanini Sanchez said...

I meant to also say that Susie Aisen has worked at the Insitutes for over 30 years :)!!! She has a LOT of experience with DS.

Qadoshyah said...

I recently came across your blog today through the Google Blog Alerts. I've enjoyed reading through your blog.

My mom has a lot of kids too - 11 to be exact ;). I am the oldest of them. My youngest brother has DS. He is 3 1/2 years old and has a twin sister who does not have DS.

My brother is a HUGE joy and a blessing to our family, as I'm sure you've found with your little Finn.

I bet your Finn will surprise you as he gets older. Surprise you with how much he will understand. My brother understands SOOOOOOO much! He understands just about everything we say or talk about with him. There will be times when I can tell something isn't quite making sense to him, so we reword it and say it a different way for him to understand. He is very smart. He is delayed in his speech, but he communicates with us as best as he can and we understand him the vast majority of the time.

He learns some things at a slower rate, but he also is advanced in somethings. Having so many brother & sisters is a huge blessing for him and I'm sure it'll be the same for your Finn. Having so many people around all the time is a great motivator and encouragment to do things. Here are a couple blog posts I've made over the last year and I thought you might enjoy them -

http://gotdownsyndrome.blogspot.com/2007/12/like-any-other-boy.html

and

http://gotdownsyndrome.blogspot.com/2007/06/joy-of-raising-child-with-down-syndrome.html

I also thought I'd mention that my mother and I wrote a book about DS. We wrote this book because we would have loved to have had a book like this when my brother was first born and when he was really young. It has a lot of articles written by doctors, therapists & other professionals. It also has stories written by parents & siblings. It has all the information that would have benefited my brother so much in those early months. You can see more info about it at www.gotdownsyndrome.net/Book/whatyoucandobook.html. If you click the link to buy the book, there is a 15 page preview of the book. The book title is "Down Syndrome: What You CAN Do."

Feel free to email me if I can be of any help or support!

Qadoshyah
qf@gotdownsyndrome.net
20 yr old sister to 10 siblings, including boy(DS)/girl twins - Feb. '05