Homeschool Curriculum

Good morning,

It feels like fall lately, probably because it is, right? While I'm sad to see summer go, I LOVE the change of seasons. My neighbor has an early maple and it's starting to change.

We could have stayed in bed this morning! Rainy, diffuse light ... zzzzzzzzzzz. snort. I'm awake!

We're changing up the schedule for fall and that's always a challenge. The transition really throws Ryan off but he seems to be doing a little better than I thought he would this year. Still in the honeymoon phase?

Homeschool starts on September 1 or so and we've got some amazing projects planned. I'm not totally done with the curriculum which is just stupid on my part. HOWEVER, I can change the school start date until the 10th if I want to ... therein lies the strength of homeschooling ... flexibility.

We do any homework during school hours but teachable moments crop up 24/7 and we certainly take advantage of them. Our big focus this year is on health. Physical, spiritual and mental.

• eating correctly,
• shopping for groceries,
•  registering with various agencies,
• exercise, joining a gym maybe, getting bikes ready
• dressing
• shaving
• massage therapy
• haircuts ... and more

Our spiritual focus is on

• Bible study
• attending church
• volunteering
• meditation
• positive influences
• and more...

Our mental focus entails

• understanding disability and my meds
• independence
• depression and treatments
• anxiety and treatments
• agencies and professionals who can help
• how to ask for help ... and more

Our other big classes are Nature Photography, Horticultural therapy, Money, Safety 101 and too much else to list here. It's so important that Ryan learn about himself and his immediate world. In order to do that he needs one on one attention and intense teaching through ASL, music therapy and repetition until tasks hit his long term memory.

That doesn't mean he won't forget it. He'll forget some things, but that doesn't mean I quit teaching him. Yes, on some topics he'll hit the wall, but on others, he'll excel.

Have a great school year and remember, I'm praying for you.

Much love and joy,

Karen

Very Special Arts Choir Starting Soon!

Good morning everyone,

Very Special Arts Choir starts soon and Ryan is so excited. He had to miss out last year due to some surgeries. This year, look out! He's ready to warble! Never mind that he's profoundly hard of hearing, he can see, feel and even hear some of it. He loves it.

If you're interested contact Jen Davis to find out more. She's a gifted director. One year she had the choir do a tympanic/percussion-type number about rain that was simply amazing. There is not the capability for one on one so if you loved one can't maintain in a group you'll either need to attend yourself or hire someone to attend with them.

Ryan loves music and I feel so blessed that he has residual hearing and that hearing aids are highly effective so that he can hear some.

They start at the end of September so make sure to call Jen soon if you're interested. Costs are minimal and your child services or adult services should be able to pick that up for you.

Take care and God bless your day,

Much love and joy,

Karen

Prize Winner!

Congratulations Candy Wendt! You're our winner for the tape pictured to the left. Thank you for playing everyone!

I have a second copy to give away! Contact me at

Karen's Giveaway to throw your name in the hat. Everyone is eligible and I'll draw again next Friday. Good luck.

Ryan and I went to the Festival in the Pines yesterday and I bought way too much. Here's my cute angel for the door. She only ran about $13. I got two pair of soft faux-angora mittens (I haven't found mittens like that since my g'ma died) and some potpourri for fall and Christmas. That was the extent of it but what I really wanted were some paintings by one of the artists there, they were incredible!

Ryan loves festivals, and so do I. He found a print of a painting of the northern lights that he fell in love with. His g'ma bought it for him so he's been gazing at that lovingly. He's so visual it's hard to turn him down.

I'm turning over a new leaf ... We're walking every single day. I changed up my work schedule and my respite schedule to accommodate the exercise. It HAS to happen. I didn't walk three days last week and I'm still paying the price with stiffness and soreness. Not happening again.

I'm off to church, then grocery shopping. Blech! That's money down the toilet ... literally! Have a great day and may God's angels watch over you and yours,

Much love and joy,

Karen

Has your 20-year-old moved out yet?

Good morning everyone,

It's another gorgeous day! I pray that you are feeling good and relaxed today. I offer prayers for your school year as your child gets ready to begin. My son has one more year of homeschool so we're gearing up as well.

I went to dinner with some friends the other night and one of them was a woman I hadn't seen in a while. When she asked about my family the first and only thing she asked was, "Is Ryan at home?" Initially I misunderstood the question and gave her a strange look because I'd never leave Ryan home alone. Then I said, "He's at his grandma's house." She looked a little puzzled. Then it dawned on me.

This woman had been a school counselor for years and was still buying into the whole disabled track. What I mean by that is "Your child must be in Special Olympics" "Your child must have a full time job" "Your child must move out at 21," etc.

I've never really followed the norm. Remember my post on being a road crossing mommy duck? I bought into that at first, but then realized I needed to concentrate on Ryan as an individual with personal tastes. He didn't want to be in Special Olympics, he didn't enjoy those particular sports. He wanted to explore the arts.

He didn't want a full time job lifting boxes or sweeping up. He wanted to work at the game reserve, regardless of pay. He's only twenty so we haven't talked a lot about moving out but we LIKE living together. It's the two of us and the dog. We scrapbook together, watch bullriding, we love fishing, outdoor movies, festivals, gardening. We like spending time together. His quality of life is awesome right now.

We're in the process of getting the house just like he wants it. Down the road I might move out and a new caregiver move in. We don't know. Right now, we're very happy.

My point here is this: Don't let others views of how your life should be dictate what you do with your special needs child. Do your own thing. What might be fine for one child will NOT fit another. Listen to your young person. Find out what THEY want out of life and give them the power to decide those things (within reason of course!) That's also one of the strengths of the IRIS program, by the way. It allows people with disabilities to break of that tracking stereotype and be themselves.

One of Ryan's favorite stamps says, "Be Yourself, There's Nobody Better Qualified."

Have a great day and may God bless you richly as you start a new year of school and activities.
Much love and joy,

Karen

Reading to your child with special needs

Good morning everyone,

Another gorgeous day and I can't believe I have to work! See ... even when you work for yourself you have to work on the nice days. I'm tempted to blow it all off and work on the weekend when it's sticky and icky but .... the childcare is arranged, the work is calling my name ... I'm stuck.

We read books to Ryan. As he gets older he likes to hear more involved stories. Grandma's voice is deeper and he can hear her better so she does most of the reading. Lately, because of Mickey's Scrooge story, Ryan has expressed an interest in Charles Dickens.

We thought he'd hear a little and be depressed by it, I know both of us were, but he likes him. Go figure. So my mother, God bless her heart, is reading Oliver Twist, Great Expectations and various other Dickens classics to him now. I get to read the fun children's books. Who knows? Maybe because Oliver is experiencing circumstances more dire than Ryan's disability he feels lucky and good about his life. I'll never know what appeals because Ryan isn't capable of articulating that.

If you are interested in reading classics to your child with special needs, like we do, you can find children's versions at Michael's. They have little hardcovers of Swiss Family Robinson and tons of other classics for only a couple of dollars each. The stories are awesome.

When we read something like that to Ryan, there is a trick involved. We have to translate into easy English the entire time we're reading. It's a little irregular to be reading something and have your brain translating the more complicated words ahead while your mouth reads a few words before it. I know, it sounds hairy, but once you try it you'll see what I mean.

 Dr. Seuss, which has wonderful lessons, is another one we read. The Lorch saves trees, Star belly sneetches teach the frivolity of  keeping up with the Jones or any kind of division be it religious, cultural or skin tone. There are so many AMAZING books out there. Reading opens up an entire world for our children. Even if they struggle to read or can't read at all, we can. It's our duty to read to them, daily if possible.

Let me know if you read any good books to your loved one!

Just a reminder, I'm still taking names for the drawing on Friday. The autism tape will be given away at the end of tomorrow. Contact me at Karen's GiveAway with your name and email so I can contact you in the event that I draw your name.

Keep watching ... my book Children of Light will be out this fall and I'll hold some giveaways with that one too.

God bless,

Much love and joy,

Karen

Sunday Brunch

Good morning,

Don't those chocolate chip belgian waffles look good? They were Ryan's selection this week at Sunday brunch. Yum.

It's a routine in our family to have Sunday Brunch after church. We either make brunch at home or go out somewhere. Since routine is doubly important for Ryan, our tradition of brunch has a stabilizing effect on his demeaner, a calming effect.

It doesn't have to cost a lot of money, just getting some family together for an hour or two after church does it. It centers both of us for the week, reminding us that family is important. Brunch is never the production that Sunday dinner is. Bacon and eggs, pancakes or something equally easy, combined with a little fruit and you're done! No muss, no fuss.

Consider starting a brunch tradition with your family. There's just something about sitting down to a meal together after attending services together that truly gives you focus.

God bless

Much love and joy,

Karen

Sock Pulling Independence

Good morning everyone,

Just in case you're like me and you haven't seen one of these ... it's a sock puller and it is AMAZING!

For years Ryan and I have struggled with his socks. He can't put them on himself very well and as he's gotten older the pulling has become more difficult for me too.

Enter .. the sock puller. I got one when I had my hip done from the hospital Occupational Therapist. It has changed our sock pulling lives. The one above is Ryan's and he LOVES it. Finally he can get his socks on ... or at least he's trying. We're working on it. 

It looks like it wouldn't work, but it soooooo does. They're only about $15 and worth every penny. You can get them at Lehman Drug downtown or at any durable medical equipment store! WOOT!

At any rate, that's my equipment recommendation for you. Viva la sock independence.

Much love and joy,

Karen 

Finding a Job

Happy Snake Day,

No, it's not a holiday, merely a happy day that bears marking for my son. Ryan loves snakes, always has and he works with snakes in one of his jobs. Cleans tanks, handles them etc. Who knows? Later the skills may transfer to pet stores, right?

We're in no hurry. He's only twenty, and is about six in cognitive years. That means he's still learning a lot through play and experience. He'll work he whole life but for now, I want him to find his bliss.

I hate the "standard" questions. I buck when people ask "Is he working?" Well, yeah, but not in a typical school-assigned job. He's working as a mascot, as a snake tank cleaner, and various other small jobs that all add up to a fulfilled life. He's busy in choir, best buddies, church, and UCP teen group, but he's not interested in Special Olympics. Not every kid is a sports nut, why should every special needs kid have to be, right?

We're working on being creative with work and leisure. Ryan has a number of hobbies that I'm trying to dovetail with his work. Isn't that what we all want.

I guess what I'm saying is don't fall into the trap of letting the school always pick your child's vocation. It's great to get help if you need it but also get a job your child wants. Take your time and be creative.

Until tomorrow,

Much love and joy,

Karen

Prize Give Away -- Including Students with Autism in their School Community

Good morning,

I gotta tell ya, we're about beaned out. Ryan's green beans did so well that most days we were picking (and eating) a pound of beans for dinner. It slowed down for a week while everything rebloomed, then whap! Beans again. I love them and so does he but at this point a nice serving of carrots would taste good.

How is everyone doing today? We're okay. August is a lazy month for us. Most of the festivals are winding down and Ryan has sensory issues with bees and bugs so fall isn't our best time to hang around food. Probably a good thing in my case.

Ryan really doesn't like bees at all. We used to own a Chevy Prizm, which I loved. It was a 2002 and the doors didn't have all the new fangled technology so wouldn't "lock" while the car was in gear. I lived in terror that Ryan would see an insect in the car, think it was a bee (he thinks everything is) and literally get out of the car at 55 miles an hour.

Since the car was not meeting our needs in other ways (size wise) I had to get a new vehicle. It was time anyway. I love the new one. It's a Buick Rendevous SUV and the doors lock the minute it's in gear! I need to install a hitch to haul bikes, but at least we'll be able to haul them! It also has lumbar support for Ryan's back and ample room for him in both the front and back seats. So far, we love it.

The Prizm was a compact and this is a mid size SUV so for the first week I felt like I was up-high driving a dump truck. The ride is smoother than our little car and when I get in traffic I don't feel like a bug to be squished. I can run with the pack. I can also SEE over other cars! I can SEE traffic, I can SEE signs over the huge SUVs in front of me. All in all a good buy. I haven't had a car payment in ten years, however, so that part was a bummer. I just feel good that I have something that fits our needs better.

I never thought I'd have to buy a vehicle to fit my son's needs, rather than something I just preferred. But then, I didn't think my life would be this way either. Sometimes I grieve for the life that might have been. Most days I'm grateful to have learned a more graceful way of living. It's a trade off, I guess.

I have a give-away PRIZE today. I'm offering a VHS tape called, "A Sense of Belonging: Including Students with Autism in their School Community." It's a tape I received a number of years ago at a conference and want to give to someone. Leave a comment OR contact me by clicking on this link  A SENSE OF BELONGING to throw your name in the hat. Please leave your name and email addy so I can contact you.  I will draw for the prize next Friday so you have a week to contact me.

Have a great week and watch for more prize giveaways in the future.

Much love and joy,

Karen

Good morning everyone,

It feels like it'll never quit with the rain doesn't it? Hope the snow doesn't come as frequently this winter! Yikes.

I'm planning menus this morning and that's always a trip. Ryan will only eat certain foods. Let me rephrase that. He'll eat anything I set in front of him but he can only eat certain foods. My appetite has changed as I've gotten older so I want things like soup, you know? Soup is a tough one for Ryan you know? And so, I end up making what he can have and they just aren't my favorite foods.

We've been eating out a lot because we can accommodate both of us but it's not good for either of us. I have to say that restaurants are doing a better job of offering some healthy choices. How do you accommodate different food needs?

A friend of mine adjusts for gluten. Another friend for gluten and casein both. Many people adapt for sugar etc. How do you not make supper a three hour endeavour? Between planning, prepping, eating and cleaning up two different meals (or more in some cases) how do you not run from 4:00 until 7:00 p.m.? Or do you feed everyone the special diet to save time?

Well, I'm off to get organized for the week.

God bless you and yours,

Much love and joy,

Karen

Vacations

Good morning,

I can't believe summer is winding down! I'm ready for fall but time just flies by. We didn't get a vacation this year, we had to rebook. It's nice to know we're all set in the future but I missed taking some kind of vacation this summer.

We usually hit Wisconsin Dells for a week if we're not going further, or the lake shore. It's always ten degrees cooler at Lake Superior.

Vacations are always such planned events. Deaf equipment for the room, accessibility in all things. It takes longer to find a hotel that has what we need and then to plan for it. We found a place in the Dells but it changed ownership and went downhill. Now we're looking for a new resort that doesn't cost $300 a night.

It's one of the reasons we're heading to DisneyWorld this year for Ryan's senior trip. It has the accessibility we need, without a lot of hassle. If you've been there please let me know if there is anything that can help Ryan have a good time.

Have a great day,
Much love and joy,

Karen

A Typical Day

And I thought my house was small! This little gem was at a museum we visited. I'm sure the shingles are new but the house itself was old-shored-up. That's kind of how I felt after my hip surgery! Old-shored-up! My aunt Elaine is fond of saying that we have to get older, we just don't have to get old. I'm still pondering that.

How are you this fine, cloudy day? It looks like rain again and I'm hoping that the sun will peek out soon. Ryan has his massage today. He's due too. It makes such a HUGE difference with his muscles, his sleep and his general well being that we've scheduled a weekly massage with his therapist. Well worth it, I'd say. He's just so much more comfortable all week long. Check out Sans Souci massage and tell them I sent you.

Things are better today. Ryan's "person" got on board. I have nothing against young kids but they sometimes just don't understand the pragmatics of life yet. They try hard but there is a general lack of understanding on how the world works. The wisdom just isn't developed yet. They haven't lived enough. They haven't built houses, worked in full time jobs for years on end. They haven't dealt with major medical in any real sense of the word or even benefits packages. It's hard for them to grasp the realities of raising a person with disabilities. They think do-it-yourself and that's not a reality for people with disabilities. At any rate, things are sorted out and I'm on to the next project.

Ryan looked exhausted yesterday. That happens with his Cerebral Palsy. He just gets to a point where his resistance is down and he needs a day of complete rest. It happens less often than when he was in regular school. It's one of the benefits of homeschooling. I can catch that and call the day a rest day. It's prevented him from crashing with major illnesses in some cases.

We're getting ready for the school year. We don't start until mid September. Which is a laugh. The paperwork claims that you must teach over 700+ hours each year. Try 24/7. When you homeschool you grab those teachable moments. At any rates, we always start with Ryan's bird hobby in the fall with migration so we'd better get out the notebook. His two banded birds at the game reserve must not have returned to the same nesting spot last spring because he didn't get a call.

I'd better get out of my cyber life and get back to my actual one. Take care and see you tomorrow.

Much love and joy,

Karen

Random Emotions

Good morning,

How are you this fine summer morning? It feels like fall to me. I've been feeling that way the last week or so, even when it was hot and sticky. The light has changed. It's lower already. The days are getting shorter and my body actually has a physical response to that so I FEEL the change.

I'm short on time this morning. I have a zillion things to do. Ryan and I hit the outdoor theater last night. It was a gorgeous night for it. We watched the Adam Sandler film, "Grown Ups." Typical Sandler. 70s music, same cast as always, bathroom humor and a thread of plot. At least it was about something and that's saying something, no matter how he got there. You can tell that he's gone all Hollywood. There's so much sexual innuendo in all films today. It just gets old. There's nothing fresh or creative about it, you know? It's a sell out.

Ryan has teen group today and they're bowling. He's so excited. He loves to bowl. This is the kind of activity these kids don't get to do very often. It's a regular kid fun activity. Barb and Warren do an amazing job with it.

Unfortunately, I'm putting out some disability fires today. I can't write about it yet because I'm angry. It wouldn't be fair to use words as weapons. I need to get past it then I'll share with you. I know that blogging is somewhat like regurgitating on the page but sometimes we don't really have the perspective we need to be helpful to others and I really do want that perspective. I want to be helpful. If I'm not, if you don't feel like you have a friend, then what's the point, right? Blogging is a form of navel gazing anyway so I don't want to take that to a level of spewing when I'm angry.  Random emotions can hurt people. I'll let you in, dear reader, when I'm not ready to do a poison pen number.

Prayers dear reader that you won't be dealing with "the crud" at 6:30 a.m. like I was.
God bless you,
Much love and joy,

Karen

Dogs Before Children?

Good morning!

And I mean that literally! It's gorgeous out there! We slept with the windows open and I told Ryan, "Sleep in tomorrow. It'll be a good morning for it." Then I got up to let the dog out, saw how beautiful it was and couldn't stay in bed!

There is a very distressed squirrel outside my window today. Funny how, as mothers, we can recognize distress in nonverbal ways, no matter what species it is. I don't mean funny ha ha either. It's upsetting to hear an animal in distress. I can't see it so I don't know where it is or what's wrong with it.

I read an article once where a woman living in California was attacked by a mountain lion and killed. She left behind two small children and a husband. The residents in the area held a fundraiser to save the lion and raised $10,000. A fundraiser was held for the mother and raised less than $1000. I think our priorities get a little screwed up when the welfare of children means less than the welfare of a predator. It's sad really. Who are we, as people, when grace doesn't extend to our own species? How have we put the dogs before the children? They are just as vulnerable, just as much, if not more, in need?

The next time you get ready to donate money or time to the animals, think. Go ahead and do it but then donate time or resources to a children's charity as well.

God bless you and yours,

Much love and joy,

Karen

Need a Speaker?

Good morning!

We grilled out last night, which was amazing because it wasn't raining and it wasn't horribly hot and sticky. It was warm and sticky but definitely doable.

Here's my big guy making S'mores. This summer is the first one he's mastered standing that close to the grill and holding his own marshmallows. A Kodak moment, wouldn't you agree?

It's funny how odd generalization can be. I wonder sometimes if the general "safe" feeling of the fence has encouraged his bravery here. If he feels protected enough to try, you know? Whatever it is I'm pleased as punch that it's working.

I decided to start a book club at church that begins in September. We're going to read Joyce Meyers' How to Hear From God." I've read it before and absolutely love it. I asked a friend to co-lead with me. That way if anything medical comes up I've got someone to take over a meeting. Funny all the contingencies we have to put in place when we're caregivers.

My first book, Children of Light, will be out this fall. It's the story of me raising Ryan in faith. Some people said I needed to tell Ryan and my story without the faith part, but without it, there is no story. It's that simple. I hope it's not didactic and that people gain strength from it. It's the book I wish I would have had when I was raising Ryan. I'll let you know when it's available. I'll also be taking more bookings for speaking engagements at churches and women's groups as well as writers groups etc., so if you need a speaker let me know.

I also speak on other writing topics, faith topics and disability topics as well as early educational issues. Now that my hip is under control I feel like I can get back out there.

Well, I'm off to church. Take care and remember, I'm praying for you.
Much love and joy,

Karen

Extra Blessings because of a Butt Head

Hello,

How are all of you this morning? It's nice to have the windows open. I make sure I do that every morning unless it's raining--which seems to be all the time lately.

Okay, so I know I went on a rant yesterday but I'm ranting again today. Get this. Ryan and I went grocery shopping at Festival. He's pushing two weeks worth of groceries out for me because I'm still using one crutch. We're hobbling along, smiling, glad to be done with our shopping. Ryan has trouble controlling the cart sometimes but like to steer it anyway.

We're in the crosswalk going toward our car which is parked in the first space, just over this cement "hump" they have separating the parking spaces from the drive area in front of the store and a car is coming. I look at the driver and she looks me dead in the eye. She's probably 65 years old, as is the woman in the passenger seat. She doesn't stop.

Ryan looks up, and panics. He tries to hurry and hits the cement median with the cart, jamming it into his abdomen, with was just surgically repaired, thank you!!! I'm trying to keep him from running, but I'm hobbling on my crutch. I'm telling him, "Ryan, she HAS to stop for us," and he's nearly running into traffic now. I gazed directly into that car and said the B word right to her.

Yes, NORMAL people would just saunter and dare her to hit them, a law suit waiting to happen. What chapped me was that it was sooooo deliberate. We're headed toward a disabled parking spot, Ryan has bright colored hearing aids and is obviously having trouble with the cart, I'm on crutches. I'm telling you now, if I could've gotten her license plate I would have called her in then and there.

Ryan was so upset in the car I didn't think he'd ever get over it.

Why? Why are people like that? I'm a positive, optimistic person but there are days when my heart breaks for my son and I want to rage at the world. It doesn't help to rage, so I rant to you, dear blog readers. I know that you understand exactly what I'm saying.

I keep remembering the Bible verse that says when someone treats us poorly, or curses us, we receive extra blessings from God. I set my hope in my faith and take a deep breath. I know that something better is waiting on the other side.

We went out for rootbeer floats and took a drive. Ryan likes riding in the car and gazing out the window. It's kind of one of his "things" so we work it in. It calmed both of us down.

Today I pray that you are blessed richly each time you feel a kick from someone in this fallen world. I pray that you find calm, quiet moments that give you happiness and peace.

Much love and joy,

Karen

A Rant about Underwear Colors....

Good morning,

I gotta tell ya, I'm bushed! I woke up at about 4:30 when the sirens went off. I was up about fifteen minutes checking the weather and my son. Then, just as I was dropping off the sirens went off a second time. Well, by then I'd had just enough sleep so I wasn't going to be able to go back to bed. Essentially, I've been up since 4:30. Now, at 8:00 a.m. I'm tired. The bed is made, I'm showered and ready for the day and NOW I could sleep. The irony of it all!

I had to buy underwear the other day and I have to ask ... WHO is in charge of picking the colors for women's panties? Are they colorblind or just misogynistic? What gives? Every pack was hideously colored. I finally found a pack with a yellow pair, a pink pair and a third pair that was a mix of the two. That yellow, however, was a yellow I'd only ever seen in baby poop. Euwwww! I threw them in the cart anyway and it just ticks me off. I don't want eggplant or fuchsia underwear. I want white with pink flowers, or yellow flowers. I want Easter egg colors that are sunny and cheerful but don't show through my light summer clothes or color my laundry. Is it too much to ask to at least have options??? If you know a good store to buy those kinds of panties I'm all ears.

hmmm. Just a rant about panties today I guess.

God bless and keep you safe with all the rising creeks and rivers,

Much love and joy ... and decent panties!!!!

Karen

Who are my Stand-by Guardians

Good morning everyone,

Today I want to touch on guardianship. Getting guardianship of a vulnerable adult is never easy. First, you have to proof that they are not capable of running their own lives and it's more difficult than you think ... FOR YOU!

It's not hard to get a guardianship when someone needs one. That's the easy part. The hard part is stripping away someone's rights, especially someone you love. Making it easier is having people you trust to make decisions with both their heads and their hearts. It's imperative that you choose your stand-by guardians carefully.

Our stand-by guardians, pictured above, were chosen for a number of reasons.

• They know and care about Ryan
• They have spent time with Ryan
• They are people of faith
• They have children so understand that not everything is okey dokey just because your child doesn't tell you about it, they will remain vigilant.
• One parent is a medical professional so can handle medical challenges that come up
• They are friends and care about my peace of mind as well.
• They will include Ryan's uncle in decision making.

Well, there are plenty more reasons to numerous to list here. I'll touch on guardianship again and all the facets of the issue but today I just wanted to briefly chat about stand by guardians.

Don't just list someone, and don't assume family will consent to be guardians, ask someone specific and have reasons why you are asking them. If they don't know that the system requires that your loved one have an advocate then they aren't right for your child.

Make a list of what's important to you and talk to a variety of people. People who constantly say to you, "I don't know how you do it" are not good options. They're overwhelmed just watching someone advocate.

You, of course will have your own set of criteria, just remember to be picky. This is your baby.

Good luck and prayers for a safe and healthy outcome,
Much love and joy,

Karen

WIth all the rain I feel like a duck!

Good morning everyone,

Ryan went fishing yesterday with UCP Teen Group. No one caught any fish but he had fun anyway. He was exhausted at dinner though. The heat takes it out of him and he was almost too tired to eat. He has a massage today and that will help get him back on track. Fatigue is such an issue for him. One of the perks of being profoundly hard of hearing is that he'll sleep through most storms. It's both good and bad of course. Good when one of us is around to wake him if need be, bad that he wouldn' hear a warning.

I'm torn on a bed shake alert for him. When we hooked up his Internet we got him basic cable (up to channel 22) so he'd have weather warnings on the local news. It's his right to know. When I'm around, unless it's really bad outside and I envision a trip to the basement, I let him sleep.

How do you prepare for storms with your loved one who has disabilities? What about people who use wheelchairs? How do you get to the basement? Ryan has such an unsteady gait that I'm going to put a stair lift chair in. I have to figure out who does that but I'm determined that he get into the basement safely. He's too big for me to carry or even help down easily so the chair becomes more necessary each year.

I'm tired of the rain. I want sun and 80 degrees. Selfish I know. We're so blessed! I look at the middle of the country with temps in the 100s and indices near 115 and I thank God that we're this far north and have 70 degree nights. At least we can be outside!

If you're bailing out from the rains last night I send up a prayer that clean up goes well for you. Remember to check the roads if you're driving. Many washed out last night. As I told my cousin when she drove through water over the road, "It's not JUST that the power of the water could move you, but there may not even be a ROAD under there, the water could've washed it away already ..." Hopefully, it's food for thought.

Have a dry day,

Much love and joy,

Karen

Back to Homeschool

Fall is only a few weeks away and I'm feeling a little blue. I love summer, even hot, sticky ones. Don't get me wrong, I love autumn too, I just lament the passing of time so quickly. It goes so very fast.

School is starting and Ryan graduates this year at age 21. I have to get going on curriculum and plans for the year yet. We don't start until mid to late September so I have some time yet. I love homeschooling and maybe that's one of the reasons I feel regret. This is our last year of it. Although I'll be teaching Ryan his entire life (and reteaching), there is still something about your child really reaching adulthood that makes you a little sad.

Ryan was in the public school from age 3 through Middle School. See my column, Life on the Exceptional Side, this month in Family Times for 10 Tips for Back to School for children with special needs. It's available now in stores.


When High School came the school district just couldn't meet his needs. Even with an IEP, he was losing ground so I decided to homeschool. It meant giving up a number of things on both our parts but we both consider it a spectacular success. Ryan has gained so much confidence and has so many more community relationships than he would have had he stayed in a traditional school.

Homeschooling isn't for everyone. I knew a woman who, when her daughter was having trouble with teasing in school, decided to homeschool her. The girl was in middle school and did not have disabilities but her mother thought it would be a snap to teach her at home. I asked which curriculum she'd decided on when she told me about it. What curriculum? She'd just wing it, she said. Two weeks later they'd gone to a play in the name of homeschool and discussed it. Needless to say, the little girl ended up back in traditional school.

One of the criteria for homeschooling is commitment. You commit to it and NEVER threaten with traditional school if your child wasn't happy there. You commit to teaching and prepare yourself with curriculum (even if you write it yourself) as well as planned field trips, volunteer activities and various other "classes."

I wrote goals for Ryan. Albeit some didn't have "measurable" outcomes like the school-required IEP but that was actually one of the strengths of teaching at home. I could have confidence building as a goal and measure it by how Ryan responded to situations on a "I think he improved: type of scale. It took a lot of pressure off of him, especially when some of his goals were so amorphous.

IRIS was a big help in getting Ryan integrated into the community. Once he turned 18 we could plug him into all sorts of activities that we couldn't when there wasn't funding.

At any rate, as you begin the school year know that you have options. It's important to always think of your child and his or her needs but also, think about what you're able to provide. If you can't teach then don't homeschool. There are other ways you can help with your child's education.

Have a great school year and see you tomorrow,
Much love and joy,

Karen 

Just a chat

Good morning,

I took this close up of beans because it seems like it's an image that is typical of this time of year.  We've been a little consumed with produce since it's our first year with Ryan's horticultural beds. I haven't gardened since we lived in the country so it's all new to me again.

It's been a bumper crop year. We're picking tomatoes and cukes now. Heavily. Both cherry tomatoes and larger ones are coming in faster than we can eat them. We're getting about six to eight cucumbers each day from two plants. It's crazy!

I have to admit that I miss the drought summers. I know that's not a good thing to say, especially after the great garden bounty we've gotten this year but I'm so much more comfortable when it's dry. 85 degrees is great when it's dry. 68 is uncomfortable when it's sticky. Still, I open the house each morning to get the fresh air, although I'm not sure how fresh it is, into the house.

Ryan is fishing this week for UCP teen group. He LOVES the activities that are outside and summer-like. I hope the weather is decent for them.

I'm rambling today. Most days I have a point. Some days I just want to chat with you a little. Take care and have a great day.

Much love and joy,

Karen

What is a Godfather?

The little gal in the photo is Ryan's goddaughter. Isn't she a cutie?

It was interesting to see how that all played out. Ryan was chosen as an "honorary" godfather. The supposedly "actual" godparents were a friend of the mother's and a cousin. The interesting part is that even though the grandmother is fond of reminding me that the position is merely honorary, Ryan's faith has insured that he take it very seriously.

I don't want to use the little girl's name for safety reasons so we'll call her Babygirl. Ryan gave her a book of prayers, a number of books on church holidays and various veggie tale movies. He models Christian behavior and prays for her at every opportunity. He visits her and I can guarantee he'll be at concerts, sporting events and Sunday School programs.

I'm sure the grandmother was thinking of guardianships when she made the distinction, but being familiar with guardianships she might want to redefine that word. Godparents no longer take children when the parents cannot care for them anymore. You need legal documentation and a baptismal certificate isn't going to cut it in a court of law.

At any rate, Ryan has cared for Babygirl to the best of his ability. God has received Glory because of Ryan's efforts and I'm proud of him. Honorary or not. Besides it seems that, at minimum, parenting of any type should involve honor. Right?

Enough of my rambling. Have a wonderful day and remember to keep cool.
Much love and joy,

Karen

We Reap What We Sow

We took a road trip to see friends last night and I couldn't resist snapping his photo of the hay field. I love the round bales sitting in the fields reminding us that fall is coming.

The funny thing is that hay comes in all summer but when the bales are sitting like this with no one frantically storing them to get in the next crop it's reassuring. The seasons are moving as anticipated. There is abundance in the harvest.

What kind of harvest will we get from our children? Are we sowing seeds of love, of kindness, of wisdom? Are we planting and nurturing saplings of charity, courage and caring? Are we watering them with security, humor and hugs?

Are you teaching the idea of giving? My father used to say, "Why make others pay for something they need, when you no longer need it." Are you squeezing every last dime out by selling every item at thrift sales ... or are you giving generously to various causes like the homeless, the missions, the refuge houses. Are you teaching that those items don't have value in the long run, that they are merely things? 

Something to ponder as we start the season of harvest. We reap what we sow. 

Have a wonderful day,

Much love and joy,

Karen

Senior Photos for Kids with Disabilities

Good morning,

I have to look at getting Senior pics taken pretty soon and I'm dragging my feet. I don't know why. Maybe because it's become this big production. We had one or two outside poses and one inside pose when I was a senior and we wore the same thing the entire time. In fact, outside poses were cutting edge. It was the 70s, what can I say?

I've been asking around and I've found a couple that I'm thinking about. Ryan has an awesome smile if you can catch it. I'll do the outfit change thing with him. He'll have one with his medals from Special Olympics, another with his mascot outfit, some outdoor, a formal indoor, perhaps a few others. Anyone have any ideas? Any good picture takers with kids who have disabilities. I found one in Mondovi but I guess she's real busy so I'll have to call and see where we're at. I want to call around for prices too. ERG.

Any ideas are appreciated.
Thanks,
See you tomorrow,
Much love and joy,

Karen

In the Right Place at the Right Time

Good morning,

I hope today finds you happy and full of hope. We have a lot of tasks to get done today but I'm tempted to blow them all off and go fishing or geocaching or something fun in the outdoors. It's going to be 80 degrees and sunny. A PERFECT day.

We drove out into the country last night, away from the city lights to admire the northern lights. That was fun. The Perseid meteor showers are visible too. Neither get old, but are absolutely amazing.  I've been watching both since I was young. One of my brothers and I used to go out and lay in the fields at 2:00 or 3:00 a.m. and watch until nearly dawn. We lived in the country so could just walk away from the house and see it all. There's so much urban sprawl now that it becomes more difficult to get away from the light pollution.

Ryan loves the northern lights so we'll probably head out again tonight. I hope it's clear. If you live in the northern climes you'll want to get out and see them.

When I was in my 20s or early 30s I was traveling down Hwy 61 along the MN side of the Mississippi when the northern lights started up. Cars pulled over by the dozens so we could all get out and look. It was the most spectacular display I'd ever seen. There were whites, greens, blues, pinks, indigos ... the best show ever. I'd never seen anything like it before ... or since.  We were in the right place at the right time.

I have a talent or a gift for being in the right place at the right time. For example, do you remember the Evander Holyfield fight that was a KO in the first round for the championship? I was in a hotel room at the time, channel surfing and buzzed onto a station that carried the fight. The bell rang, he knocked out his appointment. I remember saying to the person with me, "Huh, look at that. It's round one and that guy just won." I then proceeded with my channel surfing. The next day it's all anyone could talk about. I'm not a big boxing fan so it didn't make an impression until I found out how many people had rented the fight, gone to the bathroom and missed it.

In order to be in the right place at the right time, however, you need to BE there. That means you need to get out of the house once in a while, right? Go hiking. Go to dinner. Take a walk. Go somewhere so you can experience new sights, sounds and sensations. Who knows when you'll be in the right place at the right time?

Take care

Much love and joy

Karen

Our Obsession with Paul Bunyan

Good morning everyone,

It's a gorgeous day outside, now if the sun would peek out we'd be set!

Ryan had a wonderful time at Teen Group yesterday. Paul Bunyan logging camp is one of his favorite places to be. We visit frequently, sometimes just to have lunch while he sits in the car and admires the statues of Paul and Babe. We've been doing that since he was tiny.

One day, when we were lunching our picnic and viewing the dynamic duo from our car, a mother and child of about nine years old got out of a van. The boy looked and looked while the mother smiled indulgently. Immediately I knew that he was someone with special needs as taken with Paul and Babe as Ryan is, and has been since he was younger than the boy at the park. It was pretty obvious they'd been there before. 

I wanted to get out of the car and talk to the mother but I can be shy. What was I going to say? "Hi, I see your kid is as obsessed with these two as mine?" That'd go over well. Plus the kid would probably bolt and then she'd have a larger problem.So I stayed sat and marveled that someone else was on the same byzantine path that I was. I smiled that some other mother took the time to visit Paul repeatedly. (like we have a choice, right?)

At any rate, Ry purchased a small silver bell with Paul and Babe at the top, one of those souvenir bells, had ice cream at the attached museum and in general had fun. Unfortunately, there weren't a ton of kids. Do think about registering your young adult. 

Have a great day! Much love and joy,

Karen 

Ryan's Hearing Aids and Stuttering

It's going to be a fabulous day to get out and do something outside. Warm, sunny and August-y! I have to work so I may quick run some errands then shift my hours to be in during the heat of the day. One great thing about working for yourself is setting your own hours. Besides, with my vitamin D shortage I need to get some sun.

I knocked my laptop onto the floor this morning. The flash drive for the mouse was twisted and hanging out in components like the Terminator's arm in miniature. I may not be able to use that port again. Oh well, as long as the computer works I'll happily shell out another $20 for a cordless mouse, right? Just be aware that this post may have random edits. I'm not real talented with the mouse pad.

You may have remembered me talking about Ryan's new hearing aids that convert high frequency sound into a frequency he can hear? Well, a side effect of that conversion is that the air flow when he listens to his own voice is disrupted and he's started blocking and stuttering horribly again. (It's always been tied to ill fitting hearing aids in the past). So ... what to do?

I love that he can hear more sounds but at what expense? The new aids are blue tooth ready too so when he wears the boot around his neck he can just tap it to answer the phone or turn on the FM. It's really a wonderful set of hearing aids. However, self esteem is just as important. The blocking and stuttering bother him and erode what little confidence he has. I'm thinking of switching back to the old aids for a while, just to make sure he understands it is the aids that are affecting his speech because of weirdness in hearing himself. It seems like it's always something.

Ryan is with G'ma today. They're doing some fun stuff together and then he has UCP Teen Group at the Paul Bunyan museum. He was hoping for pottery at Destiny Artworks or other stuff rather than the "school stuff" they have planned this year. THey had a middle school teacher in for art, another in for music and now the museum. Ryan was hoping for pottery, Action City , swimming and a few other items that are more active. Enrollment has dropped for teen group which is too bad. It's a fantastic program. They go bowling, which he loves, and fishing next. THis year they're having a family picnic which is too bad. Our kids spend so much time with us anyway. I wish it was just for the kids. How can Ryan come home and tell me about his day if I'm there too? I think the thought is so sweet, just maybe a little clueless.

Have you noticed how there is always this "get the family involved" mission with all groups? As though we're not involved FULL TIME? I get a kick out of the mentality that family time is precious like it is for a normal family. People who have children with disabilities have family time ALL the time. Our kids crave getting away ... although I digress! I'm rambling here, right?

Have a great day! And I'm sure that UCP would welcome a few more bodies at teen group. Give them a call and ask for Barb or Warren.

Much love and joy,

Karen

Friends are the Umbrellas in the Storms of Life

It's raining again, so I thought I'd post a card I'd made that says, "Friends are the umbrellas in the storms of life." I like that sentiment. I don't know about you, but I'd be lost without my friends. The hard part is maintaining those relationships when you're a full time caregiver.

Relationships take time and effort. Telephone calls, lunches and hobbies are all part of hanging out but we tend to put ourselves on the back burner. Everyone elses needs come first. I'm not saying that's wrong. If my kid needs something I'm not going to flake out on him and head to a movie with a friend. It's not how I'm built. Call it a strong work ethic or a passion for family. It just ain't happenin'.

So how do we nurture friendships? How do we find time to go to lunch, head to a thrift sale, take in a movie? I honestly found that I could combine my solitude and my need for a social life in scrapbooking. I love it. I make cards at home and then get together with friends to stamp once in a while. It helps me nurture myself.

I signed up under a friend and became a demonstrator for Stampin' Up! scrapbook and stamp company just so I'd get out of the house. We always get out of the house to work, don't we? The thing was, it didn't feel like work because I loved doing it. Not only that I did parties for family, friends and other people I knew so it felt like a coffee clutch.

Then I branched out a little. It morphed into the therapeutic scrapbooking that I teach to parents of children with disabilities and into a blog. Suddenly I have online friends who stamp who are almost like pen pals and I belong to online groups. I get together every few months to stamp with other demos. I teach classes on stamping and the therapeutic scrapbooking. I get out! 

Because I was seeking unusual ways to socialize, it gave me great insight into what Ryan needed in order to hook him into social situations for friend making. It worked too! Ryan now has a variety of people in his life that are into the hobbies he loves.

It's amazing how far a little creativity can go!

Much love and joy,

Karen