upside down life

mid-year blues

2009-02-10T17:09:00.000-08:00

Well, we've made it thru first semester already. Both kids have done pretty well. Colleen has adjusted to her constantly changing schedule due to block scheduling. But at least her classes last longer and are on a rotating schedule. She is in the resource room for math and reading and life skills, and she is in regular earth science, art and PE with support. She has made some friends in ex.ed and reg. ed. Patrick has gone to Homecoming and Sadie's dances. Colleen's friends didn't go and it is just as well since he needs some space for social events. Colleen has been in special olympics bowling and now basketball, with swimming to start soon. It is still hard to believe she is in high school already. Since she is 14, she has to come to her IEP (for 5 minutes since she hasn't a clue).
My oldest daughter is in love-never thought it would happen. She brought him over for Christmas and said it would be nice to give him a gift. So we gave him a gift card to REI to get stuff for their trip to Costa Rica. They just got back after their 2 week trip. They got along well-I figure it was a test and they both passed. He is a nice guy and they seem happy-what more could a mother want?!
I had the bleak midwinter blues until today-it is 57 degrees out. Well above our average of 34! It feels like spring and is good for my soul. We'll be back to normal by the weekend-oh well.
Sorry to be so boring, but life is crisis free right now and I'm enjoying it. Will try to update more often and maybe even post some pictures!

OMG High School!!!

2008-09-16T14:13:00.000-07:00

Well, it is official,my twins are in high school. Colleen takes a bus, and Patrick gets a ride and they never see each other. Yea! Colleen is doing well behaviorally and seems to like it well enough. Patrick likes it too, especially socially. He's going to Homecoming in 2 weeks with a friend. I can't believe he is old enough to go! Lots of prep to get him a dressy outfit in such a short time. Maybe I can post some pictures.

Colleen needs to have her canine teeth uncovered and repositioned in her mouth. They will access them thru the roof of her mouth,hook on a chain and hook that onto her braces that will slowly draw them to the front. Sounds painful!! She'll never eat or brush her teeth again. She will be miserable and so will I!!

Patrick has his own issues. He'd been practicing for football and hurt his back. Well a cat scan showed he had a stress fracture in his L5 vertebra so football is over for the season. He is very angry about that! He also has issues with a molar that may also need help to erupt by removing a wisdom tooth. And, he has a double ear infection. So he is not one happy camper!!

Anyway, I am enjoying the quiet time to myself. I've been put in charge of the mom's support group and am working on a schedule. It is a pretty laid back group with talk time and speakers and meals out. The retired leader had the job for years and will be a hard act to follow. Wish me luck!!

back to school

2008-08-29T10:07:00.000-07:00

Today is the last day of summer vacation. On Monday the kids go off to high school. Yikes how did that happen??!! I've been of the phone several times with the CD leader trying to figure out Colleen's schedule. They have block scheduling-ABC days so classes are on a rotation schedule. She only is included in science, most classes are in resource rooms, and no art...heavy on the academics as well. So I'm not happy with that!! It's not what we asked for-it feels like she was slipped into her slot in a program, not having a program built around her needs. They say everything is in accordance with her IEP plan. Screw them!! So wish me and Colleen luck as school starts on the 2nd!!

summertime

2008-06-24T20:21:00.000-07:00

One week down, ten more to go. Lack of routine is driving me nuts, but the kids are happy. Had another incident with the FM system. The audiologist called and said it was lost, and that she had to use the one time free replacement!! I was so mad!! Two weeks later she called and said she found it, and didn't need the replacement after all. so it safely sitting in a box until next school year.
Colleen is in her summer camp-40 kids and 10 adults, a 1 to 4 ratio. About half of the kids are in wheelchairs. They have lots of activities-pet therapy, art therapy, dog therapy, yoga, crafts and out- door time. Also swimming, field trips weekly. So she is busy, but Colleen wants to go to school, not camp.
Patrick is deep into baseball, with tournaments on the weekends. Few activities during the day, but not enough to keep him busy enough. Have to work in that.
We survived all the massive flooding in the area. Our basement stayed dry, but we got a new sump pump since the old one was dying. Everything else has dried up. Colleen's summer program is held in a building next to the river, and it was surrounded by water the week before camp. But the water receded and there was no damage to the building so camp wasn't disrupted.
Looking forward to some sort of routine in the near future!!

You won't believe this!

2008-05-21T15:54:00.000-07:00

Day 2 of the FM system at school, and.........it's broken!! Colleen took it out, some kid took it and broke it then turned it into the office. I freaked, it isn't even paid for by the county yet!! Colleen was grounded from TV. I took it in and it will be repaired or replaced under warranty-thank God!!
On a high note, Megan started a real job with benefits and everything in Minneapolis!! Wooohooo!! She is living in a flat with 3 of her old college roommates, they all settled in up there. Anyway, she is working in research in the vet. school up there and seems to like it.
Gotta go and drag Colleen away from the TV.

4 weeks until summer!!

2008-05-19T20:21:00.000-07:00

Well I am due for a bit of an update! Megan, in Minneapolis, got a real job with pay and benefits and everything. I'm so proud of her!! Things for Colleen have been good and uneventful. She had a healthy winter. Now we are gearing up for high school next year, I still can't believe it. She has visited a few times and knows several kids. I'm friends with 2 moms who each have teenage girls with Down syndrome. We get together for outings on a regular basis. We have the girls sit off by themselves and they do quite well. They all will be in the same high school, different grades, but the same resource room. That makes me fell a little less nervous. And of course her brother will be there, but he hopes to never see her for 4 years. That's too bad since I'll be driving and picking up the 2 of then together!! Patrick is deep into his baseball season, which I love. Lots of games, lots of fun, lots of travel.
We have a new gadget for Colleen. I got money from the county to use for Colleen for a FM system. Basically it is a one-way walkie talkie. She has a tiny receiver (smaller than a hearing aide) in her ear, and the teacher, or me., has a transmitter hanging around the neck(size of a nano ipod). You talk, she listens. Teachers use it in class to help her pay attention in large classrooms. I haven't figured out how to use it at home, but will over the summer. It is hidden by her hair and is so much better than headphones. Very high tech. The teachers like it a lot.
Colleen will be in full time summer camp. It is for special needs kids and is wonderful. Full of field trips, activities, and fun. Patrick has a much less structured summer and will drive me nuts. I have my activities in the am, and he has his in the pm. Should be interesting!! I'm trying to cram as much adult time these last few weeks before summer break begins.

Gone again

2008-02-28T14:47:00.001-08:00

I took Megan to Minneapolis the end of Jan. and she is settling in there. Seems to love it, no job yet. The twins are good. We've had a healthy winter so far, i swear it is because we all get flu shots. It's been a very snowy winter as well. Winters have been rather mild, so this takes some getting used to. But it will be spring soon.
Both of the twins have registered for high school. Same school, different classes. Colleen will be included for a few classes: science, gym, art. She will spend a lot of time in resource rooms with kids of all abilities. I hope she gets enough individual attention. We are trying some new meds. Now she had Down syndrome, ADHD , and OCD. She's a piece of work, not your average DS child. So much she has to struggle with. But she is happy at school with her friends, more unsettled at home. She needs lots of structure, but doesn't want it. I try to pick my battles, like with any teenager. I'm thinking of going back to work as an OT, but not in pediatrics as I did before. Some of my OT friends have gone back after long childrearing breaks. I may do volunteering instead. We'll see!!!

Homecoming

2007-12-20T17:18:00.001-08:00

We picked up Megan from the airport on the 18th, so she has returned after 15 months in Asia. Looks good-skinny too. Colleen was so excited to see her. Megan hasn't been around much, running errands. Has to get used to driving on the right side of the road again. Didn't seem to have jet lag, but now she is crashed on the couch. It is a little overwhelming to be here with the fast pace, consumerism and prices. Sticker shock for sure. So we all have to adjust and not trip over each other. Her stuff is all over the house, a reminder she is here-don't mind the mess for now. Glad she is back and safe.
Colleen had a hearing test and she has some permanent nerve loss in her left ear. Hearing aid would not help. So we are getting an FM system, where Colleen wears an ear piece and the teacher has a microphone. It should help with her attention as well since it lessens all the background noise of a busy classroom.
Busy getting ready for Christmas. It will be hard that it is the first one without my mom. Megan also has the first one with her grampa gone as well. And that loss is more recent for her dad's family. I don't think that one has sunk in yet.
Hope all of you have a blessed Christmas with all of your families.

Whew!!

2007-12-07T10:23:00.000-08:00

Colleen's 2 hour IEP was Wed., and it went pretty well (shock!). And she is progressing in her goals (also shocking!). I'm reviewing things now and need to comment on the paperwork. Now the big question looms-what high school she attend-what will be the least overwhelming for her (and me). And where will Patrick go too.
Megan will be home in 11 days, so I'm prepping for that and Christmas. But things are balanced, for now

IEP's and XYZ'S

2007-11-08T07:00:00.000-08:00

It is that dreaded time of the year again-no, not family and holiday shopping. It is time for Colleen's IEP meeting, otherwise known as the HAHAHA!!! meeting. It is complicated by the fact that Colleen will be transitioning to high school (very hard to believe). She and her brother are having problems at school, so we want them at different schools. I have looked at the 3 public and 1 private school in our city. I also looked at 2 out of district. We have open enrollment so you can go out of district if there is room. I liked 2 schools for Colleen, one out of district and one in. They both say they are full, but might make an exception due to twins. I like 2 different schools for Patrick-one private, one near our house. Then today in the paper there will be a huge budget cut in our district, which also plays into this whole thing. In the middle of all this, my prodigal daughter will return from 1 1/2 years in Asia. Plus it is the first holidays since my mom died. So we are going to Texas to see my sister before "the storm". I hope the power of prayer will get us through this time!! He's really in control anyway. Blessings to all.

The holidays are coming!!!

2007-10-23T14:11:00.001-07:00

It is almost Halloween, then Thanksgiving, and THEN...... CHRISTMAS! Who's family do we go to, yours or mine??....Who do we have to our house??...who do we buy gifts for??.....is there some way to decorate the house once for all 3 holidays??...Hallogivingmas??.. Oh, and Megan is coming home Dec 18, but who cares. Not really, I care, haven't seen her for 1 1/2 years!!(she's been in Asia/Thailand,Laos, Cambodia, India, etc.) I hope I recognize her at the airport. So there is much to do in the next 3 months.

I'm also school shopping for high school, which makes Colleen's teacher anxious. We have 3 high schools in Waukesha, plus I'm going to 2 out of district schools and a private school. Some of this is for Patrick's needs too. Colleen's IEP is in December and I want to be ready. It may be time to get her some sort of communication system, she has an expressive speech disorder and it is time to do something besides articulation.

We buried my mom's ashes-she died in June. Colleen didn't really get it like she did at the funeral in June. We also scattered some remains in a lake we lived on. Made me think of 9/11. The remains were ashes. bone fragments, etc. I washed my hands for a week!!

Hope fall is going well for everyone.....

October already??!!

2007-10-06T10:51:00.001-07:00

We have a month of school under our belts, and are into the fall driving kids to activities everywhere. (we buried my mom yesterday-so this weekend is busy with family). These are our after school activities.
Monday: Patrick football, Colleen haircut during football, bible study
Tuesday:Patrick PT for his back, Colleen orthodontist, Teri support group
Wednesday: Patrick football, Colleen bowling, dinner with friends
Thursday:Confirmation for both, Colleen puppets at church, Teri assist
Friday:Patrick football, Colleen ballet,football game- followed by bonfire with hungry teens

During the school day this week, both kids have doctor appointments, dental appointments, I have a doctor appt. and haircut, maybe a pedicure. Also working on a ministry for special needs kids-we've met with the teachers and given them info on the child's disability. Now working on a parent pot luck and building up a reference library.

Also trying to find time for a date with my husband-ha! Helping to organize the family support program which gives families money to help keep there child in the home. Who gets what is a complex issue of points. Of course there is a waiting list.

The weather has been summer like, great for walks. Not you typical fall weather.
My 23 year old daughter has decided to come home Dec. 18th!!! She's been gone over a year. Recently they've had tsunami warnings, plane crashes, her credit and atm cards frozen (but that is fixed now). She's not all that happy to come home-loves Asia. It will be a major adjustment to have her back, but a blessing as well.

I'm also visiting the 3 high school for next year. I hear there is more mainstreaming without support,and less emphasis on adaptive skills which is the exact opposite of the jr. high program she's in now. Colleen's academics are low and slow, and I don't want her stressed and pulling out her hair again!! Plus she's ADD with some OCD issues as well.

But overall things are going well. I am blessed that I don't have to work right now, but I need to be with other adults sometinmes or I go nuts. And my time sure fills up. I need to be home at 2;30 when the kids bused come.

Hope all is well with you. Will continue to update if anything interesting happens.

Back to School

2007-09-08T15:46:00.000-07:00

The twins are back in school, thank God. I love my kids but I was ready for summer to end. Everyone was up and ready for the bus on the first day, by day 2 Colleen had enough. So I had to dress her-she can do this herself-and drag her out the door to the bus. She did come home happy, and her teacher said she slid right into her school routine. Maybe next week will be better (one can always hope).

I have a program for my computer called Boardmaker, they also have one at school. It allows me to pair pictures with words. Colleen has a number of sight words that she knows without pictures, but she needs pictures for new ones. So I used the program to print out a story about her summer. She would never be able to answer questions without this visual cue. I do a sheet every weekend, so she can tell her teachers what she did. And now (after 1 year of begging) the school is doing a sheet a week so she can tell me what she did at school. It also helps because Colleen's articulation is poor. I'm always translating for others. And if I don't get it it's a guessing game, which frustrate Colleen. Some of my friends kids speak so clearly, and some don't speak at all. One of her classmates calls her mom a bitch all the time-thank God we don't have that to deal with!!

We signed up for bowling for special olympics which starts this week. We're skipping soccer so we can watch Patrick play football. Ballet starts this week too-my 13 year old with 5&6 year olds, but she loves it. It is good for her feet, balance and self confidence. I'm hoping we can move her up to an older level, but I don't want to push the teacher. I had to convince her to let Colleen try, and she did very well.

So we're gearing up for week 2!! Wish me luck!!

church moments

2007-08-27T08:56:00.000-07:00

We have had a very hard time finding a church that is a good fit for all of us. We left 2 churches in the past due to the difficult time they had with Colleen-wanted her to be quiet, not including her in Sunday school, the Christmas play, or the childrens choir. So we went a while with no church, but settled into a Lutheran ECLA church that we love. They are so welcoming of Colleen. She is included in confirmation and all the activities. The other kids are great! Colleen is in the puppet ministry and loves it. This past Sunday she was an usher, with a little help from Dad. At the end of the service she gave a hug to everyone that went past on their way out. We've been trying to get her to shake hands instead of hugging everybody. But then one of the ladies told us how much she appreciated the hug and needed one that day! So much for shaking hands....

2007-08-17T15:44:00.000-07:00

Well that time of the year has arrived and it is time to get ready for school. I try to get Colleen clothes that are age appropriate. So we try the layered look, but she tucks everything in, and then wears a belt. She is into picking out her own clothes, so having her with me is inconvenient but important. Her jeans still fit, thank God-I had to shorten all of them 5 inches. She is a size 1/2 . Tops are more of a challenge due to her long trunk. So we hit a few store and got a few shirts-all red and pink! Oh well, hopefully she will actually wear them, sometimes she is outfit "challenged" and I try to convince her to change. Picking out the night before just means more changing. I have to pick my battles, so she usually wins. Then we went shoe shopping, she has worn the same size for 2 years! Size 4 is in little girls, so she can't get trendy shoes like the other girls. I get athletic shoes because her feet turn in and she needs the support-but the other girls don't wear them. And I probably should have her checked again for orthotics.
So back to school is a hard time for me because I am reminded how different she is from girls her age, so it takes a bit to work thru that. Then I remember that because she is different I don't have to worry about skimpy clothes, cell phones, my space, and boy craziness. (but she does talk about "Chris" as her "boyfriend" and they are going to get "married"!) In some ways she's not that different-I asked her to do something and she said "eat dirt"-great......

My first blog!!

2007-08-15T09:40:00.000-07:00

I am a stay at home mom with a 23 yr old daughter, who is in Thailand (why? i still don't know!)
and 13 yr old boy/girl twins who will be in 8th grade. Colleen has Down syndrome, and her arrival turned our lives upside down 13 years ago and continues to do so now. When she was born I couldn't find anyone else in my situation. There were support groups for twins, moms with Down syndrome kids and regular play groups. We formed a special kids and sibs play group that was great for the moms as well, but I never knew anyone with twins, one with Down syndrome. Then this week I went on line and found several! Most have younger kids, and one suggested I start a blog that might be helpful since I've "been there, done that". So ask me questions and I'll try to help. And I'll keep you updated on my upside down life.