Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, July 06, 2005

Kids and Summer Thoughts

I think it should be mandatory for all students to attend summer school, regardless of disability or not, because it helps parents survive what has already become a very long summer! The kids have only been out of school for one month, but it was the slowest month on record.

When I was a kid my next door neighbor moved to Oregon where they had year round school. I love the idea! The kids go to school for 9 weeks, have 3 weeks off, then back to school for another 9 weeks. How awesome is that? There is no having to pull your kids out of school for a family vacation, because every season has time off. The kids get to enjoy all kinds of weather that way!

Lets do uniforms too. I'm tired of my kid wearing some really wacked out clothes to school because he can. Those reading this thinking, "My kid will NOT be allowed to dress that way!" clearly aren't "there" yet with their kids. The independance thing really bites. You have to let them wear something really stupid so that people will look at them like they're wearing something really stupid, so that they don't ever want to wear the really stupid outfit again! But school...I don't get it. Some of the things I see kids wear could be considered a weapon! (I have a certain spiked dog colar and matching bracelet in mind. Might even be owned by an 18 year old I gave birth to.) If we went to uniforms, from kindergarten on up, wouldn't that just make life for all of us, parents, teachers, and kids far easier? Rest assured, kids will find a way to personalize them a bit, but still be within the spectrum of "uniform". Besides, then it wouldn't be such a shock when the want to do something like join the service when their mother has had enough of them, and they of her.

Ha! Speaking of the military....a couple months ago my 18 year old said he was thinking about joining the military, and wanting to go talk to a recruiter. I hope I didn't sound overly excited when I said, "What day do you want to go? I'll drive you there." Well naturally he didn't want my help, and a few days later was talking to a Marine recruiter on his own. (I don't exactly think he's marine material, but then again it IS better than sitting on my or someone else's couch all day! ) LET my kid talk to a recruiter??? Yeah, well his dad and I met in the Army, and the military is a fantastic experience. Yeah there's a war, but better to serve now voluntarily and CHOOSE your job, then to have to be pulled in under draft conditions. Anyway, he decided the military "doesn't pay enough".


Yeah, 'cuz you know it's like 4 bucks an hour. WELL HELLO!!!! I had to enlighten him a bit. Like, what about the fact they buy all your clothes, put a roof over your head, and keep you fed too! Not to mention you LEARN a trade while you're there! Free travel, meet new people....the whole package is probably equivelant to a $30,000 a year income, far more than I'm making as a sign language interpreter. But what do I know? I'm only the mom.

When I was a kid, we lived in the middle of nowhere, and we had one neighbor that I played with who moved away when I was 13. I don't ever remember being bored, though I'm sure my mom probably heard some complaints now and then. But kids today...what's up with them? They expect to be ENTERAINED all the time. How often do you see a park full of kids anymore? Instead parents are putting them in this class, or that class. Parents are PAYING for someone else to entertain their kids so they can get some time to themselves. How come when kids are left to their own devices now, it ends up being something they can be jailed for? Hey mom and dad....Go play with your kids! Or better yet, as a family go volunteer for the special olympics, where you'll see parents who've dedicated thier lives to helping thier child be the best they can be, WITHOUT paying someone else to do it!

Ok....guess I rambled enough today. Check back tomorrow, maybe I'll have a "real" topic.

Saturday, July 02, 2005


Today someone told me I'm an amazing person.

Who me? I wanted to look behind me to see if they were talking to someone else, but realized I was sitting at my pc reading it in an email, so that was unlikely.

So here I sit, trying to think what they could possibly see that would put me in the "amazing person" category. Analyzing yourself in such a way, (and without your head swelling) is very difficult to do.

The person who complimented me is a peer of mine, a parent of a child with a disability, namely Down Syndrome. What makes us different is that HER baby is brand new, and mine is now 9 years old. That means for the past 9 years I have been dealing with all sorts of things that they never teach you about in childbirth classes, ECFE classes, or anywhere else that I know of. These are things you can only learn by living them.

But I didn't learn alone. My daughter Angela and I have been learning together how to navigate the health care system, social services system, and the county and federal funding system. If Angela had not come into my life, I would know nothing about how to place a feeding tube into my child's stomach, and Angela would not know how it feels to have it placed there. I would not know how it feels to hand my child over to surgeons and walk away without crying, and Angela would not know how it feels to hold a strangers hand, wave goodbye to mommy, and have that stranger place a mask over her face, causing the world to go dark. I would know nothing of acronyms like ECSE, EI, IFSP, IEP, LRE, PT, OT, SLP, GI, PC, DS, CP, GT, O2, or any of the other gazillion or so acronyms I use on a daily basis, and Angela would not know how it feels to have me get upset, worried, excited, elated, defensive, depressed, exhilarated when these acronyms are used. Is it any wonder people are always asking me if I'm an RN or a med student? Is it any wonder people look at Angela and question weather she's really gone through all these things?

I would love to take credit for having developed this "amazing person" all on my own. But I can't, for really I had nothing to do with it. The Lord saw fit to send an angel to my home to change my life. That angel turned 9 this month. (Though I hate to tell ya Lord, but just in case you haven't noticed, her halo is sitting a little crooked and there's these little tiny horn-buds pushing it out of place!)

Friday, July 01, 2005

First Day at the Office

It seems my 16 year old son Tyler is really coming into his own now, however frustrating and scary it might be for me, his mom. I understand my own parents so much better now!

Tyler has been trying desparately to find a job for several weeks, filling out countless job applications to no avail. It's tough for a kid to learn hard lessons. Lessons like, it doesn't matter how YOU like to dress, if you want a job you have to dress differently. This means showering, trimming nails, wearing clothes that are not your old favorite standbys, AND removing all your peircings from your ears!

Tyler, unlike most kids his age, truly enjoys physical labor. Having a behavioral disorder, he prefers to work in isolation where people aren't constantly talking to him. He is very insightful about himself, and the things that "set him off", the things that he does and does not like to do, and the types of people that he can/cannot work around. He has spent the past school year working in a construction trades program at our local Technical college and loved it. He's also helped us do landscaping here, moving 25 tons of boulders by hand to build a retaining wall in our back yard. Unfortunately, being insightful didn't help him land a job!

I was about to take desparate measures, and bring Tyler to the local workforce center to see if they could do anything for him. The night before we were to go I prayed that God would help me to help him feel successful as a soon-to-be adult. That we could find him something that, being his very first job experience, would be something he liked doing.

The next morning I was running errands, and headed home on a route I don't normally take. Just a few miles from home I saw a sign at a roadside mom & pop veggie/landscaping stand. "Help wanted. Must have good work ethic! Apply inside." HHmmmm I turned around and went into the small open-front store and spoke to the woman there. I wanted to find out if they were looking for till help (not up Tyler's alley!) or what. When she told me they were looking for landscaping help, I could hardly wait to get home to get Tyler and bring him back!

Tyler started his very first job yesterday. He's working 12 hour days doing anything from planting trees to hauling rock. You know, all those things that landscapers do. But 12 hour days! My baby is working 12 hour days! Not only that, but it's hard physical labor! He didn't get home until 9:00 last night, and I don't know when I've ever seen him look so tired, but he was STILL smiling, talking about how he's going to spend his paycheck, yada yada yada.

Thank you God, for putting that sign on the road. For giving my son something he loves to do, and for helping me to let go!

Thursday, June 30, 2005

It Sneaks Up On You

It sneaks up on you ya know. When you have little babies nobody ever warns you that one the not so distant future....they're going to grow up and do adult things. Like driving! Last winter I realized just how fast it happens.

When I learned to drive, (I swear it feels like it was yesterday!) I took all three of my behind the wheel classes before my parents...ok my mom...would allow me to drive the family car. I remember them arguing about which vehicle I should drive, the suburban or the cadillac. Each had an argument for why I should drive the other's vehicle. At the time I thought it had to do with how difficult either one was to drive. Now I know better!

Fast forward to 2005, and my 16 year old son Tyler has just gotten his permit. Much to my surpise, things have changed! The first change is that now, when a kid takes behind the wheel, they have ONE session then come home with a list of things to practice BEFORE the next session! What? You want this kid, who's only been behind the wheel once in his entire life, to drive MY VAN? Not only that, but it comes with a little note like, "15 hours practice, then schedule you're next session."! Do they not realize that 15 hour is a very long time?

Now, I have convinced myself that I am going to be the "cool mom" and let Tyler drive all the time. I can handle this. I am a grown up, have survived the military and everything. I should be able to handle a few hours of drive time with my son. I was soon going to come to the realization that teaching my child to drive was to be the scariest experience of my entire life! It out does Army basic training, Tear gas chambers and gas mask training. It outdoes childbirth even.

Our very first time went something like this:

My older son Noah (not yet a driver himself) was in the back seat. I calmly handed the min-van keys over to Tyler, noting that he was grinning so hard I thought he might actually hurt himself. He climbed behind the wheel, looking around for the shifter like he knows its there...somewhere. Calmly, and without a word, I reach over and touch the end of it with my fingertip. He giggles, "Oh yeah. It was in a different spot in the instructors car." I swallow hard, then double check to make sure my seatbelt is securely bucked. I look back to see that Noah is now sitting in the middle of the back seat, looking for something to hold onto.

I encourage Tyler to adjust the seat to fit his long legs, instead of it's current setting that fits my very short ones. He opts to leave it where it is, with his knees about 6 inches from his chest, leaving little room for the steering wheel. I remind him to adjust the mirrors to fit his line of vision, he opts to leave them where they are too. Then he reaches over and turns on the radio. I turn it off. Afterall, I need to concentrate here.

Now, we have an extremely steep driveway, with a 10 ft drop on what is now the driver's side. (Lets remeber that I, the mom, am on the passenger side of the car. This is NOT the place to be if you have control issues!) Picture a rollercoaster. As you come up the hill you cannot quite see over the peak to the other side. This is exactly how our driveway is. Funny I've never been afraid of this driveway before, but at this moment I have visions of us finding the edge and rolling down that hill. Tyler makes himself very tall in his seat to watch the nose of the van go up over the crest of the hill. By the way he's holding his breath I can tell he's scared to death, and then realize I'm holding my breath too!

Having survived the driveway (I only had to hold my breath a few seconds before it was over.) we pull onto the street and C-R-E-E-P up to the stop sign. This turn will put us on a busy highway with many blind entrances. Suddenly I want out of the car because I feel like I'm going to be sick. But I suck it up, say nothing, and hold on just a little tighter, hoping that he can't see my white knuckles on the door handle.

Out on the street, I realize how very narrow the lanes have become, especially since Tyler clearly has trouble staying in his! 55 miles per hour seems much like the Indy 500. But I don't really have to worry about it, cuz Tyler won't go more than 40. In my side mirror I notice the cars stacking up behind us and decide that when kid gets his permit, his parents should be given a "student driver" magnet for their car. (a few days later, on yet another practice session, I wrote in the dust on my back window "student driver, pray for the mom" but Tyler didn't think it was funny. Go figure.)

Well back to driving. I was trying not to say much too him, 'cuz I've heard that a distracted driver is a dangerous one, but there was a major intersection coming and I couldn't help myself. "Ok Tyler, now we're coming up to this stop sign. You can start to slow down now....Tyler...Slow DOWN now Tyler. Oh my God SLOW DOWN!!!! STOOOOP!!! How come you didn't slow DOWN when I told you too? Don't you know when the light is red, and the cars in front of you are stopped you have to stop too, and that takes TIME and DISTANCE???????"(ok, well yeah I was near a nervous breakdown, and I kid you not my chest started hurting with heart attack like symptoms.) I am pretty sure I heard Noah stifle a scream in the back seat. I looked back to see his expressionless face has gone white as snow.

We drive about another 2 miles and it starts sleeting. I also notice the traffic is picking up, as it's now peak rush hour. I make the executive decision that our little practice session is going to be cut short. I tell Tyler to pull into the next convenience store, and when we park (which took several tries to get the aim just right) I give him a dollar and tell him to go get a pop. When he comes back I'm sitting behind the wheel.

For the first time, I hear a 17 year old voice from the back seat, "Now I know why I don't want to drive."

There is no way we're going to have 15 hours of practice time before his next behind the wheel session. In fact, we're going to LIE!