October 23, 2007 11:13 AM
Family update
It was hard to pick up and go to the meeting yesterday - a morning discussion for moms of kids with Down syndrome featuring Eleanor Voldish.
But I am sure glad I went. She is a powerhouse and full of information on eligibility/IEP issues. It was wonderful to see a bunch of preschoolers with Down syndrome playing around us while we the moms brought up their concerns and found support and solidarity.
I am grateful for this group - which will meet again in Leesburg. Anyone nearby who'd like to come next time, email me and I'll make sure you are on the list!
Like every mom, I can expect the unexpected: today was supposed to be writing/blogging all day, but Sophia was sick yesterday and slept in this morning, so I will drive her to school - then back to the computer I hope.
Here's a little family catch-up:
Hattie's radioactive iodine treatment - which she has been preparing for for a month with a very, very strict no salt diet - begins today. She will be in isolation in a hospital room with no visitors. As I understand it, anyone attending her must wear a hazmat suit. When she comes home she must have no physical contact with anyone for a few weeks. But from what they've been told, this should be the last major procedure for her.
What a long, hard road this has been for Josh and Hattie. After just a year of marriage, they have had to grow up very fast. But we know that God will use it for good. Please continue to pray for them and for their future.
Samantha and Kip have just been staffed for another baby from Guatemala. This is the fourth baby, as the first one died and the mothers of the next two changed their minds before the adoptions were complete - an outcome we all understand is really best, which makes it slightly easier to deal with the disappointment. I am in awe at their dedication as they continue to offer themselves in this capacity. The Guatemalan president has recently announced that adoptions will be shut down there after the first of the year due to problems with corruption. Many people have asked whether corruption may be involved in Sam and Kip's broken adoptions, but they are confident in their agency as they have visited it in Guatemala three times and met the mothers. They believe this is just one of those things - and that God is using them somehow to help the mothers find a deeper connection to their children.
Ben and Zach are living off campus at school this year and it sounds like a good decision which has led to increased independence and responsibility. Ben has a part-time job to supplement his summer income and get him through the year without our help. Zach is carrying a heavier load and his scholarship money is getting him through.
Sophia is applying to James Madison University for drama - she's going the early decision route. They have a strong drama department, which is the big draw for Sophia - who would like to go to Liberty if she didn't have such a strong future goal of becoming a children's director. Sophia has been a great student and shown strong character, so I'm not worried about her - although I'm sure she'll get more homesick than she thinks - I know I did went I went to college right after graduation. I've visited JMU with Ben when he was a senior and like the campus/atmosphere very much. We have friends who've gone there who say there is a vibrant Christian community. There is also a "substance-free" dorm for those who would like to be around non-abusers. Weird how that's the exception and not the rule.
Maddy is being presented at the School Board meeting tonight as one of the recipients of the Malone Foundation Award: she was the student selected from her school for talent in the arts and she received $250 to put toward her vocal lessons. Her teacher (and Sophia's) btw is a real blessing: a woman who's studied and teaches opera and Broadway belt - Edrie Means Weekly - who has performed all over and understudied with Patti Lupone. A real gift that we have someone of this caliber within an hour's drive. Maddy and Sophia see her twice a month. Maddy has also begun studying piano - which she'll need when she goes to college for voice.
Jonny (15) has enjoyed some great years in school. He had a wonderful teacher last year - Julie Sweeney at Harmony Intermediate - and still has her for one class this year, but his main teacher is Nancy Beitz, who happens to be a speech pathologist and has been really keying in on his speech! This is very exciting and we are already seeing some dramatic changes. I think I shared that he had gone on a hike with the church youth group that had turned out to be eight miles - we were amazed by his stamina. His Boy Scout troop has an overnight hike scheduled next week for 10 miles, but when Tripp expressed some doubt over whether Jonny could handle it, the leaders urged us to let him come as they really, really want him there!!! This is so exciting.
Jonny, Jesse, Daniel and Justin will be trying out next week for the Very Special Arts play coming up in the spring. Jonny and Maddy were both cast in Willy Wonka and the Chocolate Factory at their school. So Jonny keeps busy. And Maddy has been taking him with her to parties and football games. He is a lucky boy to have a sister like her - but she is lucky to have him as well :) God sure knew what he was doing when he gave me another baby 54 weeks after Jonny. My recommendation for those with babies with Down syndrome: have another baby as soon as possible!
I took Jesse (12) to Johns Hopkins University last week to meet with Dr. Capone, who is a doctor who specializes in children with a dual diagnosis of Down syndrome and ASD (autism spectrum disorder), which I believe is the proper diagnosis for Jesse, and which I am working to have Loudoun County Schools recognize on his behalf. The proper diagnosis seems crucial for Jesse as right now his autism is more of an impediment to his learning/social growth right now than Down syndrome. Dr. Capone is wonderful and spent 2 ½ hours with us taking a thorough history and observing Jesse. He recommended trying a medication which might help Jesse come out of his “shell†and be more interactive. We are trying it and it seems to be making a slight difference, but we are worried about the flat aspect his personality has taken. Yes, he’s being more appropriate, but he seems a little less Jesse. We need prayers for wisdom as we weigh the pros and cons of this course of treatment. Jesse has a terrific teacher, btw – Mrs. Curfman at Blue Ridge Middle school which just had a favorable write-up in the Washington Post on inclusion
I will be taking Daniel (11) in to see Dr. Capone soon. I don’t think that he has autism, but he has some quirky behaviors and impulse control issues – and I need some fresh ideas on dealing with them. On the positive side, he is very engaged and involved with household chores and is building a lot of confidence and enthusiasm about life. He’s always been way ahead in terms of reading (several hundred words), but we are waiting for that spark where the connection between a group of words in a sentence starts to make sense.
Justin – as I always expected – is having a great time at Waterford School and accomplishing something every day. Like Jonny, he is very outgoing and charming and with a little help will make his own way in the world. This year has been really different as the last three boys all went to the same school last year and this year they are going in three different directions. Daniel catches his bus at 7:05, Justin at 7:20. Jesse catches the bus with Sophia, Maddy and Jonny at 8:00 – there is one bus that goes to the three upper level schools since they are all within a mile of each other. It was good that he had that kind of support and I could keep him off a special ed bus.
I’m looking out my window as I write and the surrounding hills are ablaze with color. I love living in Virginia! I love that my life is so full! So much to be grateful for, including my mommy/writing life. Now, if I could only catch up. . . .
Comments
Your family life sounds abundant and full! Thanks so much for sharing it with all of us!
Just a note on the substance free dorms: I went off to college at 16 and opted to live in the substance free dorms instead of the honors dorms figuring that it would be a better fit for someone as young as I was. Imagine my surprise when I was invited to a party on the floor above me in my underaged RA's room which was serving beer. *sigh* Still better than most dorms on campus, but just so Sophia isn't caught off guard, substance free often means "substance reduced". And yes, it is really strange how that is the exception and not the rule.
Posted by: tiffany | October 23, 2007 1:26 PM
Thanks for this post...just when I get discouraged about mom-ing ONE and trying to write, you post something with truth and hope in it that lightens my heart and my outlook!
Posted by: Becky Miller | October 23, 2007 11:31 PM
Hi Barbara,
I have been a long time reader of your blog and actually was wondering recently what your take was on the situation in Guatemala.
I am the parent of a wonderful 16 mo old boy from Guatemala and a 3 year old biological daughter. My husband and I are also the full-time care givers for a young adult with autism.
President Berger's main motivation for shutting down Guatemalan adoptions is not corruption. It is because UNICEF is offering him 28 million dollars to do so. I encourage you to checkout www.guatadopt.com and http://www.jcics.org/ (Guatemala 5000 Initiative) for more information. Many adoptive parents have been working hard to allow in process adoptions to continue after the Jan 1, 2008 deadline. There has been much negative media coverage of Guatemalan adoptions. As adoptive parents, we need to support each other and get President Berger and UNICEF to agree to allow in process adoptions to continue before many beautiful children are not able to join their forever families.
Thanks,
Kendra
Posted by: Kendra | October 24, 2007 2:56 PM
Hi Barbara,
I have been a long time reader of your blog and actually was wondering recently what your take was on the situation in Guatemala.
I am the parent of a wonderful 16 mo old boy from Guatemala and a 3 year old biological daughter. My husband and I are also the full-time care givers for a young adult with autism.
President Berger's main motivation for shutting down Guatemalan adoptions is not corruption. It is because UNICEF is offering him 28 million dollars to do so. I encourage you to checkout www.guatadopt.com and http://www.jcics.org/ (Guatemala 5000 Initiative) for more information. Many adoptive parents have been working hard to allow in process adoptions to continue after the Jan 1, 2008 deadline. There has been much negative media coverage of Guatemalan adoptions. As adoptive parents, we need to support each other and get President Berger and UNICEF to agree to allow in process adoptions to continue before many beautiful children are not able to join their forever families.
Thanks,
Kendra
Posted by: Kendra | October 24, 2007 2:57 PM
I lived on the first co-ed hall at a big state school. Guys and girls actually shared the same floor, and it was the closest to having brothers and sisters. On the other hand, the all girl's dorm had a naughty nickname it lived up to. So I second the idea to get the full scoop on whatever dorm Sophia chooses. :)
Posted by: Angela | October 24, 2007 10:51 PM
