Friday, October 30, 2009

31 For 21 - #21

I knew I wouldn't make it. I had big plans, post ideas in my head, things I wanted to share and opinions on. But here it is, the 30th, and I'm only on post #21. Not so great.

My thought for this post is (once again) the impact Jackson has had on our friends or acquaintances. It is constantly weird to me how many people just chat with Jack. He smiles, and waves, and "pounds it" (knuckle bump) with perfect strangers. We've never gotten a rude comment or stare that I'm aware of. It's really fun to go places with him and watch him.

Jack's birthday was on the 27th. We didn't do any celebrating that day - we'll have a little party this weekend. Lots more to come on that!

Saturday, October 24, 2009

31 For 21 - #20 - IEP

2 weeks ago we had a meeting called the EDM (Eligibility Determination Meeting). At this point, the school district transition coordinator, myself, and several people who will be involved in the next step of Jack's education were there (including special ed. teacher, therapy coordinators, and therapy providers.) Jack had already had several evaluation appointments, so we went over the results at this meeting, and be officially declared eligible for services from ages 3-5 (gee it was such a shock - not!). I don't think I learned anything new, after all the subject, Jackson, lives here! They give you results based on some sort of chart, and give your kid's developmental age, based on typical kid development. I don't neccesarily think it's all that accurate, since EVERY child develops at their own pace, but I took it as it's intended, just a guideline. These are just numbers, they don't tell anyone about how your kid can climb up on the bathroom sink and completely empty the medicine cabinet (which has no medicine in it!) in the amount of time it takes to pour yourself a glass of tea. Some families are disappointed in the numbers, but like I said, it doesn't really tell you anything. As an example, Jack, who runs and plays and climb up on stuff and gets into cabinets and opens and shuts doors, got 15 months for physical development (motor skills). I actually laughed when I saw it. Is it accurate? Maybe, maybe not. But whatever.

So we got all the results and were told that Jack will get services. At that time, we were not officially told what type of sevices, duration (school times and therapy amount), or where he would be placed. We did have a little preview, since someone at school was nice enough to prepare us a bit. Officially, all this was to be told to us at the next meeting, the IEP(Individualized Education Program). Apparently, all of this is commonly done at one big meeting, but since the IEP includes goals written for the child's upcoming school year, I wanted a bit of time to make sure I understood what was said before the goal writing part. I wanted to make sure I didn't forget any questions I had. Everyone was very nice, but our district person would sometimes talk and then later on I had no idea what she meant. I think it's because she speaks quickly and takes shortcuts that I wasn't familiar with. So I needed extra time. Next post - the IEP.

Friday, October 23, 2009

31 For 21 - #19

Well, Miss J just left. Jack's speech therapist. I didn't cry in front of her either. I got all their addresses so when we get Jack's 3 yr old pic taken I can send them one. (And of course christams cards!) It's going to be so weird having no one come to the house. No one to show Jack stuff to. No one to cheer his accomplishments here at the house with. I know he'll go to school and the teachers and therapists there will see him and let me know what he's doing but it won't be the same. I'm going to miss them. Have I mentioned how I hate change?

Thursday, October 22, 2009

31 for 21 - #18

"We're catching up!" (Said with a pirate-y type accent. One of my favorite lines from Pirates - Curse of the Black Pearl

Pirates came out the summer of '05. My family loved it. I REALLY loved it. Got it on DVD for Christmas that year and watched it every day when the kids were in school. If I didn't have enough time for the whole movie, I could watch all the important parts, fast forwarding, in just under 45 minutes. Captain Jack Sparrow was my favorite character EVER!

So when we found out we were having a baby, the first thing I thought of was "if it's a boy, we'll call him Jack!". Several months later, we had a Jack. I thought the name worked because 1. I loved it and 2. our baby needed a strong name because of everything he would have to deal with because of having Ds. JACK is a short, firm name. It has a playful side too. And we actually named him Jackson, which has a little more formal feel to it. (Plus it reminds me of Johnny Depp - yum!)

31 For 21 - #17

Yesterday was our last day to see Miss L, Jack's PT. She came in with a sad lip and I had to tell her "oh no, don't start! I'll cry!". I managed to not cry 'til she left. She gave Jack big hugs and was gone :(. What am I gonna do without these gals?!

Tuesday, October 20, 2009

31 For 21 - #16

Heeeeeeere's hat boy!! (These first 2 are why we usually help Jack put on his hat!)

And this one needed assistance because it was so darn heavy!

31 For 21 - #15

It was as bad as I thought it would be. Saying goodbye to Miss C, Jack's OT for the past almost 3 years. She gave us wonderful advice and encouragement. She cheered for all of Jack's accomplishments along with us. She enjoyed him and his silly antics. I will soooo miss her.

Tomorrow we say goodbye to our PT friend. Oh lord, help me.

31 For 21 - #14

This is our last week of EI therapy. I have been putting off thinking about that. I'm guessing I'll be okay the first week, slightly nervous the second week, and really sad the third week. I wonder what Jack will think when he doesn't see his therapist friends anymore. Will he notice? Will he miss them? Will he be sad? He'll be starting preschool in Nov so maybe he'll be so busy with that it won't be such a big deal for him. I'll miss their advice, and really, they are the ones who know Jack best, besides me and Allan. I will miss sharing milestones with them, and stories about Jack's adventures. They are a big part of this extended family we joined when Jack was born. Our therapists are more a part of our lives than any of our siblings. It's true. I hope they know how much we appreciate them, and will miss them.

31 For 21 - #13

I'm at a loss. I had so many ideas at first, but they've all fizzled down to squat. So today I'm going to post my to-do list in hopes I will get something done.
(In no particular order)
1. clear off kitchen counters
2. sort papers in LR and file keepers
3. go through papers in hallway (don't ask) and put away or recycle
4. clean my room (it's not bad, just needs dusting, etc.)
5. finsh cleaning out Jack's room and take outgrown clothes to OUAC
6. basement (blech!)
7. catch up on laundry (is that really possible?)
8. plan a birthday party for you-know-who!

I have hope people. I could get all these things done, it's just all the day-to-day stuff that causes delays. Plus all these people I live with really don't help at all! Maybe I should add #9 - create a chore chart and stick to it!

Sunday, October 18, 2009

31 For 21 - #12

So not only is Oct Down syndrome awareness month, but it's also the month of Jack's birth. As his day approaches, I keep thinking about what was going on in my head just before his birth. I wasn't ready, I know that. Physically, I felt okay. Gestational diabetes turned out to be a blessing. I was taking better care of myself than I did before, and since! (That's interesting, why am I not pregnant not worth the care I took of myself when pregnant? I know, it was all for the baby but still.........) Mentally, I was worried, excited, nervous, happy, and of course, stressed. I was concerned for this new little person, worried about my other kids and hoping I'd be able to juggle everybody's needs. Allan and I were still functioning as a team, but we were each dealing with our concerns mostly on our own. I think neither of us wanted to overwhelm the other. Here's a pic we took the weekend of my super baby shower. That was a great weekend, I hadn't laughed so hard in such a long time. Sorry for the rambling thoughts. Maybe I'll be more coherant later. (Hard to believe there's only ONE baby in there!)

Thursday, October 15, 2009

31 For 21 - #11

I've started keeping binders. It seems to be a good way to keep papers sorted and together. I have one for Jack's first 3 years of EI. Since we're in the midst of the IEP process, I started another one for his years at pre-school. I try to keep it up to date but sometimes that means putting the papers in there and then punching holes later. I got the kind that you can slide a cover sheet in so I bought some fun paper and put pics of Jack on there and his name in fun letters. I put everything in there just in chronological order. I keep thinking there might be a better way to do it without getting too over the top because if it's too complicated I won't do it! We'll see if I can keep it up. I also have binders for Mary Kay (if you need anything, even a catalog, let me know!), one for the other 3 kids, one for my DSA info, and I started one for medical stuff but started putting that stuff in the main Jack binder. It seems to be working well.

I need a day here in the house to sort papers and fold laundry and clean floors and throw stuff away! A day without ANYONE else here! Even with Jack's nap during the day, I get nothing done most days. What can I do with my family? Hmm, send them to the zoo? If the weather were at all decent here that might work! It's too darn cold!

Wednesday, October 14, 2009

31 for 21 - #10

Random images post! Jack is a little boy with a lot of personality and a family who loves him very much. Very typical for us, maybe not so much for those with outdated, preconceived notions of how Ds is.

We LOVE "Deadliest Catch", the Discovery Channel show about crab fishing in the Bering Sea. We found out one of our favorite captains has his own line of fish entrees! I bought it because I couldn't stop laughing about it and made the kids get their pic taken with the box!

Ninja baby? Or just a silly boy who can make a HUGE mess?

Jack loves lights so he was happy about our Halloween entry table!

Tuesday, October 13, 2009

31 For 21 - #9

I am sooo far behind! I'm still going to try to get 31 posts in but obviously I'll be doubling up most days.

I wanted to mention Jack's school. It's a preschool class of 2 year olds who are in the First Steps program (Birth to 3 here in MO). They go once a week for 2 hours. Jack seems to enjoy it. They sing songs, do craft projects, eat snack, and learn to sit in a circle and go to the playground with their little friends. There is one teacher and 2 helpers. They all seem super nice and I like them all. The best part is that Jack gets to go with Braska. The last time he went, there was only 4 kids in class! Flu, or some kind of illness kept them all home.

This is the same building he'll go to actual preschool in, starting after his birthday. We're in a great district with this terrific school. He'll be in class with typical kids and other kids with sn. More on that after our IEP meeting in a couple of weeks. (I didn't change my mind about not wanting him to go - I just know it's a great place.) I'll take a pic of him outside of it before the weather gets even crappier than it is now!

Sunday, October 11, 2009

31 For 21 - #8

Down Syndrome in itself does not suck. Some of the crap that comes with it does. What is bugging me today? My 3 yr old going to preschool. We had our eligibility meeting last week. Of course, nothing is for sure yet, but it's quite possible Jack will go to school most of the week. So we have to be somewhere most mornings, we'll get home in time for lunch and nap, so I'll only get a few hours to hang with my baby, less time for errands and activities, less time for hugs and kisses. Plus he'll come home all smelly. I don't care how clean the building is, school doesn't smell good. Yeah, yeah, it's all for his benefit, blah, blah, blah. I know that or he wouldn't be going. But that doesn't mean I have to like it, be happy about it, or not bitch about it on my very own blog. (Nor does it mean he HAS to go EVERY time - ha!)

Wednesday, October 7, 2009

31 For 21 - #7

Lots of parents who have kids with Ds say they don't "see" the Ds. Their children are their children and when we're busy with the day-to-day stuff (school, therapy, dinner, baths, playtime) the Ds really does take a backseat. It does for us. We just go about our business and enjoy Jack (or not!) just like the other kids. But, I see the Ds every time I look at him. It's the eyes. And I'm so used to it, even though I do "see" it, sometimes I'm still surprised by it. I know, that doesn't make much sense. But the other day Jack was playing so sweetly and I was enjoying watching him, and I just thought again, "wow, that cute little boy with Ds is mine". And I had to make myself keep sitting there, so I wouldn't run over and give him a big giant squishy hug! How I love this boy!

Tuesday, October 6, 2009

31 For 21 - #6

Here's another cheat post. This is the story of how we found out Jack would have Down syndrome at birth. I'm a nosy type of gal, and love stories about babies and births and how families found out about their babies' Ds. So I posted this before; skip it if you've read it and let me know if you posted your story.

Installment #1 - How we found out

At about 12 weeks pregnant (right after we found out we were pregnant), I decided to do that nuchal fold test, where they measure the back of the baby's neck (via ultrasound). There's some magic number that is a marker for ds. With every pregnancy, I took pretty much all the tests because I like to be prepared. This sounded like an easy one, so I took it. They couldn't get our little one to be in the exact right position, so it didn't work. That was on a Fri. We tried again on Mon., still with no results. I don't really remember what made me decide to have the amnio; I just remember having the appointment and my friend Sherry telling me she would come with me because she didn't want me to go alone. This was really a big deal 'cause she lived a couple of hours away. We found out Jack was a boy while getting prepped, and the actual amnio really wasn't bad. That was on a Wed. On Fri., while I was home, my ob called. "I really hate to tell you this, but your test shows Down Syndrome." I know he said more stuff but I sure don't know what it was. I called my husband at work and told him to come home. He did, and we cried together. We had plans that week-end but cancelled everything. We didn't tell anyone for almost 2 months. I just needed that time to be okay. It was really hard. People kept calling to ask if we heard anything yet and I lied. I said "no news must be good news, ha ha" knowing the whole time I would have to tell them at some point. It's an emotional thing. I honestly wasn't worried that anyone would be mean or anything, I just needed to get to the point where I was emotionally okay telling people because I knew I would be the one reassuring others. I thought no way can I start talking to people about this if I'm breaking down every time. Even my closest friends and our parents. For some reason, I needed to be strong. My dr. was great. He said, at the first visit after we found out, that we wouldn't dwell on the ds unless I had questions or concerns. He wanted me to feel like this was a regular, fun, miraculous pregnancy, just like it was. We finally told our other kids. They decided at once no one would ever make fun of their baby brother and were protective right away. They made me cry in a good way. We then told my parents; I kind of chickened out and told them when I was literally on my way out the door to go 3 hrs. home from a visit with them. After a quick hug, I ran away quick so they could be upset and cry. Then I wrote a big long e-mail to all the friends and family I had an e-mail address for and even asked them to forward it to others. The response was really positive. Sounds anti-climactic, but that was it. I have one friend that I'm really close to and everyone was saying to her "wow, you sure kept that quiet" and she has to say "yeah, cause she didn't tell me" which I feel a little bad about but I just couldn't yet. The rest of the pregnancy was okay; I had gestational diabetes (special diet, blood checks, and even shots in my tummy!) and lots of ultrasounds and non-stress tests and an echocardiogram for Jack and everything came back great. Everyone acted very excited to see our new guy. We had the BEST baby shower. (That'll be another story!)

31 For 21 - #5

Okay, so I missed yesterday. It was a busy day! There was school for Jack, then Walmart, home for a nap, football game, dinner, and bed. Doesn't sound like that much but I was pooped by the time Jack went to bed so I did too. Once again, I will mention how much attention this kid gets. It's so funny to me. All he did was sit at the game on his Daddy's lap, smile at those who smiled at him, waved at those who waved at him, and at the end, several people came up and spoke to us. "What a good boy", "how nice he sits", "what a sweet smile", and mostly it's other moms, and pretty much everyone pats his head or his hand. Have a mentioned lately how much I LOVE him?

Sunday, October 4, 2009

31 For 21 - #4

Every so often, I'm reminded of the sad sad sad reality that most women who find out the baby they are carrying has Down syndrome, and they abort. The statistic is something like 90%. (If anyone knows a better estimate, let me know.) I'm right now thinking it's time for Jack to have a nap but he's having so much fun I can't stop watching him. EVERY DAY, I thank God for this little person that I had no idea I needed in my life. He's funny, and silly, and makes us all smile and laugh every day. He can also throw a fit, get into stuff, and make a mess like nobody's business! I started this blog to have a record for myself, of Jack's progress, and remember things we do as a family. But if ONE person reads it, and thinks twice about making a decision that could cause them years and years of grief, I'll feel a little happier.

And just so we end on a happier note - this is about 2 yrs ago but I like it!

Saturday, October 3, 2009

31 For 21 - #3

Okay, here is my ds related post today.

Babies and toddlers with Down syndrome are cute! Here are 2 examples:

Granted, I'm a little bit predjudiced, but man, that is a cute kid!


This post is mainly for me. I know, I'm supposed to be posting about ds, but I'll do that later.

My Andrew plays football for his high school. If you know me, you know that. He played soccer and tball when he was little, but he's not played organized sports since probably 3rd grade. So when he originally wanted to play football as a freshman, my first thought was "cool!" followed by "oh no - you might get hurt!" but we let him play anyway. And he LOVES it! He's not been very athletically inclined before now, but he goes to every practice, every game, every early morning weight lifting session, every Sun morning film. It takes time away from other things our family could do. He's not the very best player on the team so he doesn't get to play every minute. As a matter of fact, he hasn't gotten to play in a varsity game this whole season. He's a junior. He did get asked to play down on jv, which is fine and great with us because he gets to play in the games (I guess some players or parents were upset by getting asked to play down but we were happy he'd get field time!)

I was starting to get discouraged and sad about this varsity season and Andrew's lack of playing time. But last night changed all that! We were playing our biggest rival - the other team here in our town. And we were winning! It was a great game; touchdowns and terrific plays by both teams. We sat on the 50 yd line right behind our guys, high enough up to see well but close enough so we could hear the coaches and guys on the team. (We, meaning dh and I and lots of other parents of players.) During the 4th quarter, I heard it - "Smith! Where's Smith?!" yelled by the lineman coach. Holy cow! Where is he? My eyes were going back and forth on the line, my heart was pounding, and there he is, running toward the coach. There he goes, my #65, running into the game on the d line. We got the ball so o line was up and I thought it was over. By this time I was so excited for him I almost cried! Stupid Mom emotions! But then he stayed in for the offense and played 'til the end of the game! I don't think my eyes have been open that wide before! I didn't want to miss a second!

So of course I made a scene at the bus but by the time the guys were back at school I had myself under control. I was on some kind of weird "I'm sooo psyched for my kid" high that I'm still feeling a little of it today. (Just breathe Julie!) So now all the laundry, running around to far away places (twice a week sometimes because of jv), stress over homework and all these practices finally feels okay. The AMAZING smile on my kid's face is worth it ALL! (He, for the record, thinks I'm outta control too but he's riding his own high so lets me get away with it!)

Like I said, this was just for me. I finally "got" it - why all the hard work is worth it. And it only gets better from here. Pics ARE coming!

Friday, October 2, 2009

31 For 21 - #2

I told you I was gonna cheat so here's the first :). I "borrowed" this from my friend Meredith's blog. (If you read this Meredith, Thank You!!) If you don't already, go visit her family.

Meredith said:
The three types of Ds are "non-disjunction Trisomy 21" (ie, regular plain old Ds LOL), Mosaic Ds, and Translocation Ds. Here's what those mean:

Non-disjunction, or regular T21 accounts for a majority of cases of Ds. I think the number is around 95%. A typical person has 46 chromosomes, which are found in 23 pairs. With T21 there are three (trisomy) of the 21st chromosome. In regular plain old T21 the person has three 21's in every cell of their body. There is no "mild case" or "severe case" of T21, because it is in every cell. It's actually an over-abundance of information that is sent to the body, not missing info. T21 is not a hereditary disorder- it's not handed down in families. It is an anomoly that occurrs during conception, or even is carried within the egg or sperm. Something neat I learned recently is that people with T21 tend not to get cancers other than Leukemia. Researchers are studying the 21st chromosome to see if they can find the cure for cancer!

Mosaic Down Syndrome is also a triplicate of the 21st chromosome, but it is not in every cell of the body. This happens during cell division where anytime in the beginning formation of the body the cells divides and some get an extra 21st chromosome. From that point out every cell division from the affected cell has T21. Mosaic Ds may not be diagnosed in people who have very small portions of their body affected. If it is diagnosed, the range of ability, intelligence, and health issues has been found to be just as varying as that of a person with full T21. Many people with T21 are very high functioning individuals who are integrated into the school system and society, others will require lifetime care. Some have very few health issues, others have everything in the book. For mosaic Ds it is believed that the areas a person has the T21 can determine their ability level and certain physical characteristics as well. MDS accounts for about 2-3% of cases of Ds.

Translocation Down syndrome is a little different from the first two, but again, it presents itself the same way as T21 and MDS. Translocation is only found I believe in about 1-3% of those diagnosed with Ds. Translocation CAN be an inherited trait (one parent is a carrier and the child gets it from the parent) or it can occur spontaneously. Translocation means that a third 21st chromosome (or a piece of the 21st) is attached to another chromosome. The most common translocation is called 14:21 because the 21st chromosome is attached to the 14th. Another type of translocation is 21:21 where the third 21st chromosome is actually attached to another 21st chromosome.

And just for fun... there is technically a combined Ds which is called Mosaic Translocation, and that's where only a portion of the cells of the body have the translocated 21st chromosome :) How's that for tricky??

She explained that much better than I could.

Thursday, October 1, 2009

31 for 21!

So, it's October!

That means Down Syndrome Awareness month! Of course everyone who reads my blog probably already knows that but just in case you didn't, now you do! Of course I celebrate Ds Awareness month because my wonderful, amazing, sweet, adorable little Jackson Caleb!

So for this month, I'm going to try to write 1 post per day. I'll cheat some days and give links to previous posts about technical ds info, or Jack's stories (how we found out, nicu stay, or heart surgery). I may even link to some of our friends' blogs that have interesting stories. If you have any questions or stories - please share!

Last year I made some Ds awareness ribbons that M and I wore on our jackets and even gave some away. If anyone wants one, let me know. I have lots more ribbon! Here's M modeling our ribbons and a close-up of one:

So whaddaya know? My first post is done!