a great appointment.... and some answers (finally)

I wrote here about the problems M's been having with his back, and the frustration I felt trying to get some answers as to what is the matter... Yesterday he was seen at the Spine Clinic at UCHSC and I finally feel like I'm understanding what is going on. Up until now I felt like I was being told different things by different people, and nothing made sense... nothing seemed to fit together.  After talking to the doctor M saw yesterday it feels like things are finally fitting together and making sense.. which feels really good.

It looks like M has a stress fracture (spondylolysis) in one of his vertebra. It sounds like it could be genetic, although I've wondered if his skeletal problems might also be connected to his FASD. (Since prenatal alcohol exposure can affect bones...)

From Wikepedia:

Spondylolysis (spon-dee-low-lye-sis) also runs in families and is more prevalent in some populations, suggesting a hereditary component such as a tendency toward thin vertebral bone.

Although this condition can be caused by repetitive trauma done to the lumbar spine or strenuous sports such as football or gymnastics, anatomy also plays a major role. According to research done in 2007, genetic make up of the lumbar spine has much to do with the occurrence of spondylolysis in certain individuals.^{[citation needed]} A study done on 115 male skeletons with L5 spondylolysis was proof that a slight tweek in the anatomy of the spine can increase the likelihood of spondylolysis. In those with spondylolysis, many times the inter-facet region of vertebra L4 is more trapezoidal in shape with a larger width than that of a normal vertebra. This also changes the iner-facet height, making them shorter and narrower. With this defect in the spine, a normal load applied to the spine will be greater compared to those without it. This is due to reduced surface area and torsional range of motion during twists and bends.

Apparently, the spondylolysis is probably the cause of the "focal sclerosis" that showed up on the CT scan. If there is a fracture, his body's response would be to lay down bone in the area of the injury. That abnormal bone growth is the focal sclerosis. 

All this has to be confirmed with a bone scan that M will have done in the next couple of weeks. After the scan we'll follow up with the spine doctor. It looks like treatment is probably just enough time to let the bone heal, and possibly a brace if it doesn't seem to be healing well. The doctor did mention the possibility of surgery to screw the pieces of bone together, and M looked about ready to head out the door. After his hip surgeries, M is very afraid of surgery... especially anything involving screwing bones together. (M still has screws in one hip from his first hip surgery!) I told the doctor that surgery wasn't something we wanted to consider or talk about right now and he quickly backpedaled... 

So... all in all a great appointment... we both like the new doctor and feel good about the direction things are going. 

Enough about medical stuff... tomorrow this blog will be back to it's regularly scheduled programming! 

just coasting along...

M never learned how to ride a bike growing up... I tried many times to teach him, but his balance is sooooo poor, and he was so afraid of falling, that the least little wobble on the bike triggered anxiety and his refusal to continue trying.

Bike riding would be so wonderful for him though, both physically and mentally (the freedom, the fun of taking a nice bike ride) so I've kept my eyes open for ways he might learn.

I found this video the other day....

...and this method of teaching made total sense to me. We have enough space here, and some nice little  hills, so I decided to try again to teach M to ride.

He isn't learning quite as quickly as the woman in the video, but he's learning. :)

We started on a very small incline in the front yard. He'd start at the top and coast down...



And he did is over and over and over again...









The other day we "graduated" to a longer hill in the little pasture (no soft grass there, but plenty of soft dirt!)  and he's doing great. He's coasting probably 40-50 feet down the hill. Since lack of balance is his issue, he's doing a lot of coasting... I want him to really feel the balance, and he seems to be.

Right now the bike he's using has no pedals (to get in the way while coasting) but we are going to start putting the pedals back on today and see how he does.

If he's able to learn to ride, we'll be getting new bikes (I don't have one and R's is taking a huge beating as M is learning to ride on it) and try out some of the bike trails near us!

Resources...

We are incredibly blessed to live in a community that is rich in resources for young adults with disabilities. There are honestly too many educational, interesting, or just plain cool things for M and R to participate in... I've found I have to pick and choose activities and classes so we have a good balance of down time mixed in with busy times. (A good balance keeps us all feeling good!) 

 This past month was a little busier than usual though, M's having a busy basketball season (his team is doing to the State Games this weekend!) and the kids had the opportunity to take an indoor kayaking class at the rec center (and we couldn't pass that up!), and they've been going to the "Access and Functional Needs Citizen's Police Academy" down in town. The name of the class is a mouthful, but basically it's a citizen's police academy designed for young adults with disabilities. They went last year too and it was such a great class they decided to do it again! 

It was a five week class and here's what they learned each week: 

 Week One they toured the Police Department, seeing everything from the dispatch center to the holding cells, got their police academy ID's, lanyards, and T-shirts, and played some ice breaking games to get to know each other better. 

 Week Two they learned about about Disaster Preparedness, 72 hour kits and "shelter in place". They filled out emergency information sheets to keep at home, and, for homework, we had to make an emergency plan for our family. 

 Week Three was Basic First Aid and Fire Prevention and Safety and they really practiced the first aid skills they were learning.. splinting "broken" arms, applying pressure to "wounds" and even using a blanket carry technique to pull their instructor to "safety" (down the hall). An instructor from the Fire Department taught the second half of the class and they learned what to do in case of fire, how to put out certain types of fires, and even practiced putting out a grease fire by smothering it. 

 Week Four was Crime Scene Investigation and they learned a lot about the tools and techniques that are used to investigate crime, then they learned to take fingerprints (their own and someone else's!). 

 Week Five was 911 Dispatch, where they learned more about what dispatchers do, and how and when to make a 911 call. They got to practice with the 911 simulator phone, making 911 calls on the simulator and answering the questions the electronic dispatcher asked them. 

 Week Five was also graduation... The kids worked hard during the police academy and they were rewarded with a really nice graduation ceremony. The mayor was there, as well as several police department supervisors. (Unfortunately the police chief couldn't make it, although he was at graduation when M and R took the class last year.) I was running late that evening and forgot my camera at home.... but M did remember his. :) His camera doesn't take great photos but they are ok, and I'm glad we have a record of the graduation. 

 Here's M receiving his diploma from his instructor, with the Mayor, police department supervisor waiting to shake his hand, and his RCC adviser taking a picture

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 R receiving her diploma...

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 After graduation... from the group shot of all the students together.

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R and M with their instructor, she was their instructor for the police academy last year too and she's just awesome... She so good with the kids, and isn't afraid to have fun with them. 

They are both crazy about her...

 

 Both kids are happy and proud of the work they did at the Police Academy, and even though it was a repeat for them I know they learned... having the skills reinforced is always good. I'm so grateful that our police department spends the time and money to do this for our community...    

Busy, busy... and a few Christmas ponderings

I love and hate the Christmas season. I love the holiness of it, the time of preparation for the gift that we celebrate on Christmas day, remembering that tiny baby born so long ago in such primitive circumstances. I love the decorating, the trees, and feeling of good will... I love people saying good-bye with a "Merry Christmas". I love choosing (or making) gifts for people who are special to me. I love Christmas carols...

I hate the rest of it... the endless shopping, the shameless advertising with the push to always buy more, buy bigger. I hate Black Friday (which now starts on Thursday... Thanksgiving!). I hate the gaudiness we've created around what should be a holy day.

But now with less than two weeks before Christmas, the shopping is done, the gifts are wrapped (except a few that haven't arrived yet), and I feel the real Christmas spirit settling upon the house. I've been a little surprised this year at how much easier all the preparations are now that the kids are older. When K was 4 (she's now 26) we started taking foster babies, and got M the next year. From the minute he entered the house life has been challenging... he's been high need (HIGH need!) and his needs didn't decrease as he got older, they just changed... But now, finally, he's mostly stable psychiatrically (in other words most days he's stable... reachable... reasonable... with just occasional bad spells) and medically he's doing ok (we've finally figured out ways to mostly manage the gastroparesis with diet and OTC products) and he's become a fairly predictable, agreeable person. It's been amazing to me how much easier it is to shop for a Christmas gift (or 10!) or get some wrapping or decorating done with him older and doing well. It's been decades since I've had this much freedom...

It's very  nice, I could get used to this. :)

On today's agenda? Call Grandma and Grandpa (Joe's folks) and find out when the big white elephant exchange is (it's a big family, with just kids and grandkids there are 54 of us!), call my cousin and invite her to Christmas dinner, and call S's foster mom to confirm those Christmas plans. With the rest of the day I have a little upcycle project I've been excited to start working on....

No,  I can't say what it is... it might end up under the tree on Christmas morning, so it has to stay secret!

"Life College"

Last night was the final class of the "life college" mini-program offered by our CCB (Community Centered Board). It consisted of two classes (zumba and money management) offered back to back with a dinner break in between. The classes met twice a week for three weeks. I'd been very excited about the program when I received the email telling me about it and inviting the kids to attend... How perfect, I thought, packaging life skills training in a way that both appeals to and respects young adults with disabilities.

Life skills are a HUGE part of what I'm trying to teach M and R. The success they have in learning life skills will determine how independently they are able to live some day...

The classes ended up being a bit of a disappointment. The kids really liked the zumba... jazzy music and the opportunity to dance is always fun. I had been more excited about the money management class though, as it's really a life skill... something they will need to live on their own. Unfortunately I think they learned very little from it. After the first class they both complained that the instructor used a lot of words they didn't understand... they just couldn't tell what she was talking about. (Yes, they asked questions but still weren't able to keep up with what she was saying...) Later I was able to hear a little of the teaching in that class and realized that the instructor was teaching (reading) from a "script" as she presented the material.. and the material must have been intended for typical teens, not those with developmental disabilities.

So... the kids didn't learn a lot from it. :(

But the really good thing that came out of it is the money management curriculum workbook they were working from... and the "life college" idea. I'm definitely going to reteach the money management class here at home. I was able to get an extra copy of the workbook, and both M and R have their own copy... so I can teach from the extra copy as they work through the material in their own books. That part will be easy (and fun)...

I'm also thinking about the "life college" concept... If I could take the life skills they need and organize them into "classes" what would that look like? We've already done a lot with life skills... we've worked on learning about public transportation, shopping/cooking skills and have focused on learning when and how to take OTC medications (both of those involved lengthy trips to the store!), the kids do their own laundry, are able to do some basic cooking (ramen noodles, fried eggs, etc.... but at least they both know how to use the gas stove!), and follow simple directions for food preparation (mostly microwave stuff). We've also worked on money skills, both kids having their own checking and savings accounts and debit cards, and we've done a couple of lessons at the ATM.

But there is SO MUCH more they need to know... and we need an organized way to review the things that have been taught but they might forget.

So I'm playing around with the idea of trying to organize basic life skills information into "classes"... It's good for them to learn organically as things come up each day, with some more intensive lessons added as needed... but I'm thinking having it all better organized will help with making sure nothing major gets missed, and they get the review they need.

Having it organized in this way would also help me to teach the same things to S, as much as possible in the time she's here. She's had very little in terms of life skills education up to this point... (the other day I had to coach her through putting groceries away, which things are perishable, which aren't!)... so I know it's something she really needs too.

I would love feedback about this... please share your thoughts and ideas!

Here are some of the areas I think need to be covered: (an asterisk indicates something we've already studied but will need review, an asterisk with a "P" indicates we've partially studied this, but there is more to cover)

-Safety at home, what to do in an emergency*... everything from not giving information out over the phone  and over-flowing toilets to natural gas smells, maybe some basic first aid.

-Taking care of yourself and your space*... laundry, cleaning, hygiene, etc.

-Food prep(*P)... reading labels (so important for M!), finding and following cooking directions and simple recipes, stove safety, food safety (salmonella etc.) how to know when your food is done cooking, what to do if something goes wrong (food burns, you get burned, food overboils, etc.)

-Safety away from home*... stranger awareness (M always needs this!), street and parking lot safety, etc.

-Out and about(*P)... appropriate community (social) skills... boundaries, which ones are appropriate in various settings, where to ask for help if you need it

-Money... budgeting, staying within a budget (when shopping), how credit works,

-Banking.(*P).. ATM skills, writing checks, different types of accounts, what happens when there are problems ("oops, not enough money in account!")

-Shopping(*P).... go over again our "rules of wise spending" comparing prices, reading labels, how and when to return something, online shopping

-Public Transportation*... reading the schedule, waiting at the stop or station, paying (buying a light rail ticket, or paying as you get on the bus) safety on the bus, getting off at the right spot, etc.

-What to do when you're sick*... what do to for common illnesses (and discomforts... like constipation), OTC medications and what each one is for, reading the labels, understanding dosages and side effects,  when to call the doctor, etc.

-Being involved(*P).... applications... for jobs, library cards, anything... how to fill them out, where to find the information they ask for., how to sign up for classes, buy tickets for things, etc.

I've tried to find a good life skills curriculum I could buy and haven't found anything I'm crazy about, but I think this idea has possibilities.

Feedback... what have I forgotten? (A lot I'm sure!) Ideas for organizing this in a way that makes sense?

"Yes, I did it!"

Homeschooling kids with learning differences is an always changing, often challenging proposition...

When you throw in the memory problems my kids must deal with, mixed with a fair amount of anxiety (you'd be anxious too if you couldn't count on remembering today what you worked so hard yesterday to learn), school... even carefully modified homeschool... can be tough.

I found this online (I'm not sure what the original source is or I'd give credit) and LOVE it. It's a nice visual, is concrete, and thoughtfully walks through the steps from overcoming fear and hesitation to achieving success.

I love the little guy dancing up at the top :)





I think I'm going to print it out and hang it in the classroom...

Bits and pieces

Summer is zooming by at warp speed around here... the busy days just seem to fly by!

What have we been up to?

Working in the yard and gardens... Keeping everything watered when it's so hot and dry is a daily job, especially with the new sod I just laid. (Which is looking very good, by the way!) We're getting a few tomatoes, but not all the plants are doing well... it might be a small yield this year. The jalapenos are looking great, and producing well, and the green beans and lettuce have gone wild! They must like these warm dry days... and the pumpkin patch looks great. All in all a good year.. (it's so much easier to garden without the spring hail storms!)

We had the septic tank pumped yesterday... What a miserable job! I'm not sure what the people who built our house were thinking, putting the septic tank (and it's covers) in the middle of the front yard. It means every few years we have to pull up the grass and dig up the covers (for pumping) then lay the grass back down. The grass, of course, doesn't do well with being pulled up and replaced and always looks a mess for a year or so afterwards. :(

We had S over the weekend... She's doing "ok" but not great. We took her to the movie in the park Saturday night (brrr... it was SO cold) and the farmer's market Sunday morning. I think she had a good time...

After doing well for a couple of months, M's gastroparesis has been flaring up lately. He was sick most of last week, and still isn't back to "normal" (for him). His diet is still super restricted (which can sometimes be a fight) and most of the time he does pretty well. I'm not sure why he suddenly got so sick... hopefully his gut will start working better soon and he (we) can all relax a little.

The kids and I have finished the annual chopping down/pulling out of the purple thistles for this year. We ended up with 11 LARGE trash bags of thistles, countless tiny stickers in our skin, and a deep appreciate for power tools. (We finally ended up having to cut one of the patches down with a chain saw!!) As soon as the trash guys come today, the purple thistles are GONE... hallelujah!

I've finally started work on a project that has been sitting around for a year or so... fixing up a little handmade wooden kitchen for granddaughter Emmy. I found the little kitchen at a garage sale a long time ago and it's been sitting around waiting for me to spruce it up for our Miss Emmy. Yesterday I took all the hardware and doors off, wood puttied, and gave it a light sanding followed by two coats of primer. Today I'll (hopefully) finish up the painting and start shopping for new cabinet and "stove" knobs, and a new counter top.

And yes, we've been getting school done too. We are working primarily on life skills these days, with work sites and other volunteer work being a big part of our homeschool. But we are still plugging away at math, using Teaching Textbooks. Math is a subject that, if not continually reinforced, both kids tend to forget... so we are careful not to neglect math. R's also keeping up with her ukulele lessons (you'll find her playing in the park on Wednesday mornings, she and her teacher moved her lessons there for the summer) and we always have a read-aloud going.

We're in the middle of our "Comedy Movie Night" series too... We started with "Christmas Movie Nights" during the holidays last year, and it was such a hit we decided to have some other movie night series' throughout the year. What we do is pick our favorite movies, or movies we think will be favorites, of a certain genre and schedule them, one each week, on a particular evening after dinner.  The schedule is printed out and posted on the frig. Our movie nights are usually Thursdays, and we're working our way through such gems as Three Amigos (the kids laughed 'til they cried!), R.V. (an old favorite), and Open Season (one of M's picks :). I think we all look forward to movie night, it's a time to just kick back and be lazy for awhile. Comedy Movie nights will last through the end of August, then we'll take a short break and start "Scary Movie Night" sometime in September, followed by "Christmas Movie Night" again in November/December.

I guess I've rambled about this and that enough... time to get out to the barn and get our big boys fed. ;)

Not sure how I feel about this...

Back in the "old days" (1995-2006) I spent a lot of time working in the FASD (Fetal Alcohol Spectrum Disorders) community... organizing and facilitating support groups for families, traveling around the state training foster and adoptive parents and social services caseworkers about FASD, going into schools to train teachers, and doing educational advocacy for individual students impacted by FASD.

I truly loved what I was doing, but this work was also driven by my need learn as much as I could about my own kid's disabilities, and by my love for them (both M and R have FASD, S has it as well). But then M was diagnosed with schizophrenia in 2001 and the medications just weren't stabilizing him, so finally in 2006 I "retired" from the work I was doing and settled into a simple and happy life as full time homemaker/caregiver/handyman/financial planner and Queen of the Barn.

M's older now and is more stable (I've heard the first 10 years of schizophrenia are the hardest, that certainly was true for us!) and I was recently asked to facilitate and help grow a support group that is starting up in SE Denver. It's a bit of a drive for me, but I'm closer than anyone else who could do it.

After thinking about it for awhile, I said yes... I'd commit to facilitating the next three meetings.

I'm not sure how I feel about this...

On one hand it will be good to dabble a little in an area that I have some expertise and feel so passionately about...

On the other hand a simple life as Queen of the Barn is very nice...

I like simple, it works for me.

Hmm... I guess time will tell if this was a good decision or not.

My adoring "subjects" Murphy and Tucker...

keeping track...

We like to keep busy...  but often it seems like the fun things we do are quickly forgotten by the kids. (Not because they don't care about those things, or have no appreciation, but because of the memory problems connected to their FASD.)

So a few months ago I turned my little chalkboard wall in my kitchen/dining room into a log or journal of sorts, and I list our "special" activities. It's always amazing to me how much we do. (I forget about things too!) Before cleaning off the wall and starting over again at the beginning of each new season, I take a picture of the wall to print out for the kids. (They each have a photo album for these pictures...)

We've just started the "spring wall" , here's the "winter wall". (The little box with Accra 6,742 indicates the miles away K (dd#3) is while she's in the Peace Corps, she wrote that after we mapquested it the day before she left... I can't bring myself to wipe it away... so it stays.)

Our "holiday wall":



Let's go back even further... our "summer wall":



This has been such a fun way to keep track of the things we do... Often I'll find R just standing in front of the wall, reading and remembering what we've done.

What now?

It's been one week since M's surgery.  (And it's been one week since I had more than a couple hours of sleep in a row, so please excuse any whininess on my part...)

I'm worried about his recovery...

His GI system is NOT right... it's not even close. It seems that his belly can hold about 48 hours worth of food before deciding it's time to violently get rid of it. The lower part of his GI system seems to have checked out completely... working only when I load M up with super sized amounts of GI meds. (And even then not working much...)

M was very sick again last night, so as soon as offices start to open, I'll need to start calling docs... probably starting with the pediatrician. I'm hoping we can go in for an x-ray (to check for blockages in his bowel) and then come back home again. I really REALLY don't want him readmitted.

Poor R... this is totally feeding into all the fears she had before the surgery. She has phobias connected to both vomit and hospitals... She was so afraid that this surgery would turn out like last time... with in and out hospitalizations, and M vomiting for months. It's about 45 degress outside right now, but R is sitting out on the back porch to eat her breakfast... that's how stressed she is about being in the house after M was so sick last night and this morning.

And poor M! He too was worried about this surgery... he's the one who lost 20 lbs after the last surgery and suffered through months of stomach pain, medication induced diarrhea, and the indignity of (seemingly) the whole world talking about his bowel habits.

He fell last night on the tile floor... his newly repaired hip was VERY unhappy about the fall and has been terribly sore since. Even just getting an x-ray done is going to be so hard on him... painful.

I know (I believe) the surgery had to be done. Knowing that the surgeon found the labrum still intact and in good shape reinforces for me that getting the hip fixed (before there was damage done) was a good thing.

But I wish we didn't have to go through the same misery we had last time with M's GI system. It's hard for me to think about finding the energy again for the kind of long drawn out recovery M had after his last hip surgery.

I'll do what I have to do though... and count this as a learning experience... apparently M's gut can't manage any surgery... it must not have been the narcotic pain killers, or the complete lack of activity after the last surgery that triggered those problems... since neither of those were issues this time.

When I'm tired my mind travels a path I usually carefully avoid... wondering about M's future. People with schizophrenia typically don't live as long as people without sz... and FASD has it's own set of life shortening problems. M has both... and a bunch of other medical/physical problems. And he, apparently, can't tolerate any surgery without severe consequences.

I can't think about his future right now... I need to think about today. Which doctor to call first... should we have him readmitted, or try to handle things at home? (with lots of physician support, of course...)

And my younger two daughters each have birthdays during the next few weeks... (K will be 24, R will be 15!) and I'll need to get some shopping done, and plan the celebrations! (Hmm... celebrations that might be tricky if M still can't eat... :( )

But in my spare time, because painting is one of my favorite therapies (and I've already painted everything inside the house that needs painting and I can reach!), I've started working on a long-thought-about project...

..decorating my barn with a little "barn art". Yesterday, I got about half the face drawn on the barn with chalk... hopefully I'll finish the chalk part today and start painting.

It took me awhile to figure out how to take care of M and work out in the pasture on a ladder, but necessity is the mother of invention you know... and finally I just loaded M into the minivan and drove him out into the pasture to the barn. He was able to sit or recline on the lovely soft leather seats, while I worked up on the ladder just a few feet away.

Tucker was the only one who thought this was a terrible idea... I wish I had a picture of the shock on his face as I drove the minivan through the gate and into the pasture. He looked absolutely incredulous that I would do such a thing! At first he took a defiant stand just inside the pasture gate... sure I would never move that huge red thing past him and into his territory. But as the minivan kept moving towards him he rethought the wisdom of taking a stand against the intruder, and settled for snorting out a warning and tossing his head around as he ran away.

Ah Tucker... you make me smile... you are such a brave little donkey.

So, between phone calls to doctors today, I'll be out at the barn on the ladder... and maybe part of the good that will come from where we are right now is a funny little bit of barn art smiling over my pasture!

I.E.P.

Individualized Education Program (IEP):

An IEP describes an individualized educational program that has been designed to meet a child's unique needs.  Each child who receives special education and related services must have an IEP.  Each IEP must be designed for one student and must be a truly individualized document.  The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when age appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.

The Individualized Education Program (IEP) is a legally binding document.

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For the first time in 11 years M is enrolled as a student in a public school district.

For the first time in 11 years he has an IEP.

I'm not sure if this is a good thing or not.

I had high hopes for the school to work transition program offered by our county. It is for 18-21 year olds who have disabilities, and focuses on teaching life and employment skills. I thought it would be a good next step for M... learning from someone other than me, and being pushed... stretched... a little in terms of work skills. Statistically, it's very unlikely he'll be able to work, even part time, as an adult. The schizophrenia makes working very difficult... the FASD and his physical problems only add another layer of challenge to keeping a job.

But...

... he's already shown that he's capable of things you wouldn't expect from someone with his diagnoses. So my thought was, lets see what he can do... (Always monitoring, of course, that he's not pushed too much... risking destabilization and other problems.) I had high hopes for the program...

Now, one month (and one IEP) into M's new schooling experience, I'm realizing that it's not all I'd hoped. His time on work sites is severely limited by his need for line of sight supervision and his hip problems.  During his time at "the center" (really just a single temporary classroom sitting in a parking lot in town) he's working on things that we've already done at home. When they aren't at job sites or working at the center, they work on community assess... being out and about in town, shopping, eating out, etc. That might be a valuable thing to work on for kids who have spent Monday through Friday for the past 12 years in a school or in a day care setting... but M has spent the past 12 years out in the community. Homeschooling has already given him many (most?) of the skills they are working on in this transition program...

Sometimes, when they tell me what they are doing for the day, I feel like they're just babysitting.

We don't need babysitting.

And while M is there playing Uno and putting crayons into baggies for IHOP to hand out with their kid's menus...

... he's losing academic skills.

Skills we worked hard for many years for him to learn. This isn't just my fear or a guess... I'm seeing it happen.

I just can't let those skills go without trying to help him hold onto them.

They do no academics at his transition program.

So I've got to make sure we have time to do enough school at home to help him hold onto what he's already learned, and hopefully continue learning.

This probably means limiting his time at the transition program.

I'm going to have to spend some time thinking about what this might look like, then we'll need to have another meeting to make the changes to his IEP. (Right now it's written for him to be there full time...)

Right now though, my mind is full of worries about his upcoming hip surgery (scheduled for Tuesday) and my concerns about his transition program are like the miserable flies out in the pasture... buzzing through my thoughts, never holding still long enough for me to do anything about them, but never going away either.

Maybe when M's in the hospital, and I have those quiet hours with nothing to do but sit by his bed while he sleeps, I'll be able to get my thoughts organized and figure out a plan that will help M stretch and grow in living skills, while still leaving time (and energy) for his academic skills.

I should also follow up on my last post while I'm here. No, Liese, I'm not 72... I guess the horizontal candle on my birthday cake doesn't look as much like a minus sign as I thought it did. The candles say 63 - 9. :)

A quote....

... I recently found, and love:

"Sometimes courage doesn't roar;

sometimes it's a quiet voice at the end of the day that says

I will try again tomorrow."

I would like to make this into a plaque or something for M's room. He has so many struggles... the FASD, the schizophrenia, his malformed, painful, hips and his poorly working GI system... but he shows so much strength and spirit in not letting those things weigh him down to the point that he loses hope. He shows great courage each day...

This quote also makes me think of my friend D who has autism. He, with his family, is right now dealing with a community that doesn't understand him, and so is afraid of him. They are cruelly trying make him move from his neighborhood... I see so much courage in D and his family and they try to work through this situation.

And it makes me think of an older woman I recently met, who despite suffering a stroke five years ago, and having a left side that doesn't always work the way she'd like it to... is still brash and sassy... an upbeat person who cleans houses and does respite care for the developmentally disabled to support herself and her barn full of horses.

I think this quote is a good reminder that courage is not seen just in the BIG dramatic events, but is found every day in the quiet (sometimes sassy!) courage that is all around us.

medical stuff... a long rambling update

By  necessity we see a lot of doctors... specialists connected to all of M's issues, the kid's pediatrician for everyday stuff, and lately R's needed to be seen more frequently because of the back pain she's continued to have since the car accident we had last December.

This past week we had two major appointments... R saw an orthopedist at The Children's Hospital who specializes in back pain, and M had MRI's and arthrograms of both hips.

Unfortunately, R's appointment was a total waste of time. The orthopedist was very young, and probably very smart... but his "people skills" were terrible. He was rough in his examination of R, and apparently paid no attention to the information sheet they had me fill out which, along with her medical history, let them know that she's developmentally delayed. He fired questions at her way too fast for her to process and answer... even if she had been familar with the big words he was using. After a two minute exam he gave his opinion that her back pain was nothing, and started in with a long patronizing lecture to me about how I just needed to stick with PT and R would be fine.  At that point I'd had ENOUGH. I stood up, thanked him for his time, walked to the exam room door and opened it. Luckily he took the hint and left. It was also lucky that it was a heavy door, with one of those things on it to slow it down as it shut... because otherwise it might have been slammed behind him.

R said he was so rude to her that she was trembling during the examination and that she'd rather just keep hurting than see another rude doctor.

The kid's pediatrician read the orthopedist's notes about the appointment (she is connected to the Children's Hospital computer system) and was also upset (an understatement) with his handling of the appointment... She's already left a message for the orthopedist to call her, and ordered an MRI for R (the orthopedist refused to order an MRI, saying it wasn't necessary.)

Not all the doctors we run into are great, but it's been a long time since we've stumbled upon one THAT bad.

Thankfully M's procedures yesterday went more smoothly. They were also done at Children's Hospital (our home away from home) and took a couple of hours. Because he's still having a lot of hip pain, his orthopedist (a different, much better doctor!) suggested MRI's and arthrograms of each hip the last time M saw him... with the goal of trying to pinpoint the pain and decide on what (if anything) to do. M did well with the procedures. He was pretty stressed earlier in the week, and after R's experience with the orthopedist from hell I almost cancelled the appointment... not wanting anything to do with Children's for awhile... but it all went fine. They had a "child life specialist" come to radiology to help M through the procedure... basically she's just someone who has a head's up about his disabilities, can help him understand what's going to happen, answer questions, and even just hold his hand during the procedure. I decided to wait in the waiting room this time. I've always gone with M for procedures etc. but I wasn't allowed to stay for the arthrogram (radiation exposure) and he's already had numerous MRI's so they aren't scary to him, so I decided he could just handle it himself.  And he did. :)

I'll schedule R's MRI today, and hopefully hear back from M's orthopedist soon about the tests they did yesterday. More hip surgery may be one of the options, it's something the ortho has already mentioned as perhaps being needed. M is stressed about the possibility of more surgery (and honestly, so am I!) and I've told him that unless they have a VERY good reason for surgery, and can virtually guarantee it will help significantly with his pain... we're not doing another major surgery.

Unfortunately, M doesn't have any good options with his hips. More surgery (if that IS an option), or living with daily pain waiting for the hip joints to deteriorate to the point they both need to be replaced. Neither one are great options.

On the bright side though...  I adjusted M's meds a week ago or so and he's doing well... more stable again and without the increase in oculargyration that I was worried the med adjustment would cause.

Also on the bright side... We are going to a concert tonight!! Our church is sponsoring a Matt Mauer concert this evening and we're going. :) It will be the kids first "real" concert and they are so excited... and so am I...I really like Matt Mauer's songs and it will be great to hear him in person.

unsettled

The weather has been so strange the past week or so...  We had six inches of heavy snow on the ground before last week's snow was over, and it's been cold and dreary ever since.

The back pasture should start greening up now... finally... it's been bone dry all spring.

The sun is finally out, but it's very windy.  The front door has blown open twice since the wind picked up... once last night after we'd gone to bed. We woke up to a cold house, but at least we didn't end up with any wild "visitors" that wandered in looking for shelter.

The wind has Murphy in a tizzy... Usually when I go out in the morning he's at the fence nickering to me about his breakfast. This morning he was running wildly around the pasture, twisting, bucking, and scattering the donkeys... slipping in the mud and slowing down to get his balance... then off and running again. He did come to the barn to eat, but stood panting, trembling, and pawing the ground even after he had a feeder full of hay in front of him.

I stayed with him as long as I could this morning, talking to him and reassuring him, but he was still worked up an hour later when R went out and even shied (shy-ed?) away when she went into his stall. She spent some time grooming him and just being with him and he seems calmer now.

I think the wind is unsettling for people as well as animals sometimes... M has been unsettled the past couple of weeks...  having the basement torn up for so long, and all the workers in and out, has been hard for him. I hope the wind doesn't add to it and leave him feeling the human equivalent of Murphy's mood this morning.

Math as entertainment...

Because of the kid's disabilities, structure and predictability are the name of the game at our house...  The days we are home are very structured, we do about the same thing at about the same time each day. This is not as important for R, who can usually manage a more go-with-the-flow kind of day, but it's crucial for M who does not shift gears easily or well.

As M gets older he seems to be getting more easily "stuck" on things. Most of the things he gets stuck on are little things, when we eat lunch, when he does school (and who does school first!), but sometimes his getting stuck leaves the rest of us stuck in a mind numbing routine that's hard to find a way out of... at least without rocking M's boat to the point of causing real problems - which does break up the monotony but can lead to the kind of excitement I'd rather live without.

Late afternoon and evenings have been a rough time for awhile now. M was always tired and unsettled by late afternoon, and I needed to get dinner on and couldn't always give him much attention them. (The crockpot is great, but there are limits to how many times a week you want to eat a crock pot dinner!) After several years of working on it, and much drama and frustration (on both our parts) M has finally settled into a late afternoon "reading time" routine that is working VERY well. It's such a relief to have him settled during a time that has been rough for so long.

Because we don't watch TV in the afternoon/evenings, except very occasionally, it's been hard to figure out what to do with the evenings. I always have a read aloud going and usually read a chapter to two to the kids each evening right before bed, but there is still a lot of time to fill... especially with the longer days lately.  M is not able to just go entertain himself with something, except sometimes with Gameboy, and every evening he wanted to play board games. I really like playing board games... I do... but it was feeling like we were all trapped in some weird time warp with each evening being an exact repeat of the previous one, right down to the words M used to ask us to play a game with him.

So now I'm structuring the evenings too. Sundays, for years, have been "Mom's TV night" where we all settle in front of the TV to watch my favorite show, and the only one I'm wiling to turn the TV on in the evenings to watch (Extreme Home Makeover :) )... so I only had six evenings left to figure out. I turned Monday into "game night"... I make a fun dinner (this week I made big plates of healthy nachos) and we pull out a longish game and we play the game during dinner and sometimes straight through 'til bedtime. Lately we've been enjoying Parcheesi for our game night... R likes it and it able to play it (she often has a hard time with games) so it's our current favorite. Wednesday I turned into "soup night", and if the weather is good enough we take a walk after dinner. Friday is "movie night", we pick a movie for us all to watch together and eat dinner in the family room.

That still leaves three unstructured evenings a week, but that's a lot easier to deal with than seven!

Last night, (unstructured) Tuesday, M was at loose ends... he didn't know what to do with himself and things seemed to be heading downhill quickly... so I told him to run into the classroom and grab his math book... we'd get a lesson done. At first he said no (looking at me like I'd suddenly sprouted horns!) but then the thought of doing his math when Joe was around to watch (and be impressed!) motivated him to get his book out. R wandered in to the room (also looking for something to do, I'm sure) and I sent her for her math book also.  The kids spent 30/45 minutes or so working on the math lessons we hadn't gotten to earlier in the day. M worked happily along, much more settled again with the little bit of structure and R went along because she had no choice... but from the way she watched the clock I'm pretty sure she would have much happier to just go to bed early.

After the kids went to bed I thought briefly of turning one night a week into "math night"... we could all sit around the dining room table doing math... but honestly, that seems really weird... even for me. There is a limit to how far I'm willing to go to structure our days and I think math night might be a ways beyond that limit...

Soup night tonight... M should be more settled today knowing what we are doing this evening.

pricey, but cool...

I bought each of the four older kids a "Nook" for Christmas. (R got a different little expensive bit of technology.) I bought them back in October or November and spent the next month or so going back and forth between thinking it was a great idea... and thinking it was a stupid idea.

I think the older girls liked their gift, and I hope they are having fun downloading books onto their Nooks. And I can definitely say it was a good gift for M.

M has some vision problems... nothing that affects his day to day life very much... but he does have double vision at times, and has a very difficult time reading books with regular sized fonts. He does much better with large-print books, but there are a limited number of them at our library... and most of them aren't books he'd necessarily be interested in reading or be able to understand. (Most of them are adult books...) Even with a large print book, having so many words on a page is hard for him and he tends to get lost in the words... so for a long time he's listened to books on CD. But again, there are limited number of titles available at our library, and books on CD are usually much more expensive to buy than a book (at least the ones he wants to read are...) so he only owns a few of them.

The Nook has made all the difference in the world to M. He says it is his favorite Christmas gift, and is already four chapters into a book he'd wanted to read, but wasn't available on CD, or in large print.

Here's what makes the Nook such a cool piece of assistive technology for us...

-The screen is easy on M's eyes, and he can adjust the font size. He's got the font adjusted large enough that he can see it easily, and there aren't too many words on each "page"... making it possible for him to easily read it.

-It saves his page for him. He used to get VERY frustrated trying to find his page in a book. He often couldn't find a bookmark, or the bookmark would fall out when he picked the book up. If your memory isn't dependable (so you can't remember your page number) and reading is difficult (so you can't quickly scan each page to see if you've already read it) finding your page in a book can be a real chore. Having the page saved automatically probably seems like a little thing... but it's a big thing to M, and helps make his experience of reading an enjoyable one.

-It's quick and easy to download a book to read. (And cheaper than buying the book!) Because M can get so overloaded in stores, especially stores that are "busy" visually (like bookstores), it can be hard for him to shop. There are too many choices, too much going on, and too many things that are too expensive, not appropriate for his age, etc. Now I can easily get him a book he'd like to read without ever leaving the house or having to take him into a large, over-stimulating bookstore. (And I can do it immediately, which is wonderful... no waiting for the book to ship!)

I love to read and have felt sad for M, knowing that for him, reading was not the uncomplicated, enjoyable, experience that it is for the rest of the family. I think the Nook is going to make a huge difference in terms of him enjoying reading, and being able to read just about any book he wants!  (Not just what I can find on CD, or in large print!!)

I'm so excited for him...

One of *those* days...

Dinner was in the oven and I was trying to quickly pick up around the house, while I mentally made a list of the things I'd planned to do today... but hadn't gotten done.

Realizing my list was not making me feel one bit better, but only making me feel more stressed and hurried, I shifted gears and started mentally making a list of things I had gotten done. The list started great... but deteriorated quickly.

Here's my list:

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`1. got dinner made

2. got a little school done

3. fed the animals

4. got a shower taken

5. brushed my teeth

6. got my hair combed

7. got the toilet flushed (the kids sometimes forget)

(yes, I was getting THAT desperate to think of things I'd gotten done today)

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`Hmm... it was definitely one of those days.

a very long couple of days....

It feels like the past couple of days were several weeks long.

At least.

It was less than 48 hours ago that I first found out that my friend Lynn, and her younger daughter Mariah, had died in a car accident. Lynn's older daughter survived but is badly injured. Thankfully, they are expecting her to recover.

Lynn and I met about 8 years ago, and bonded over parenting our adopted children, and R and Lynn's daughter were friends. Only a month ago they were here visiting... and the girls rode Murphy, played Clue, and just wandered and played out in the big pasture.  Like M and R, Lynn's daughter have FASD. Lynn adopted as a single mom, and worked harder than anyone I know... caring for her girls, advocating for them, working full time to financially care for them, and working in the FASD community to support other parents. She was a powerful force, and amazing woman, and I'm so glad I knew her.

I've been rereading Lynn's blog and found this post... It, and many others like it that she wrote, that show so clearly her warmth, her love, her dedication to her children, and to the "cause" of preventing FASD and supporting families raising children with FASD. What a terrible loss her passing is...

Please keep her surviving daughter in your prayers.

I found this picture on Lynn's blog... I think this sign sums up pretty well how she lived her life.

Good-bye friend...

We went to court yesterday and were granted guardianship for M. So we're back to where we were before he turned 18 and became, legally at least, an "adult".  With guardianship, I will be able to continue to make his medical, legal and financial decisions. He will, of course, be a part of the decision making process... but there is just no way he is capable of making adult decisions on his own... at least not right now.

We visited our dear Granny yesterday too, we hadn't her seen for a while and missed her terribly. Since learning about the passing of her friend, R has wanted... has needed... to see Granny.... her "first" mom... and as we headed home after the visit, R said she that seeing her helped her to feel better.

After a quick quiet time at home, we headed out again to a Halloween party at M's girlfriends house. It was a good party, and R met some new friends and M renewed some friendships with kids he hasn't seen for awhile. It was a late night (for us), and we are tired today and spending  the day just hanging around the house. I'm cleaning (my therapy) and planning house projects (more therapy), R rode Murphy (her therapy) and M has laid around like a TV watching slug most of the day. If I had any energy I'd make him get up and do something else... but I don't... and a day of TV watching isn't the worst thing in the world.

I am still stunned...

... so I try not to think about it too much.

I haven't written much about S lately, or the drama that was her life this past summer. The agency (that has legal custody of her) threatening to move her from her foster home to place her in a group home... a place she didn't want to be. They'd moved her the previous summer (2009) from her long term foster home to this new one, and it took her months so settle in and adjust... and now they wanted to move her again.

That threat hung over her head all summer, and was the reason we started, back in July, to become re-certified as foster parents (initially a requirement to maintain contact with S while in the group home) only to stop part way through the process when the agency changed their minds and decided fingerprints and a background check was enough.

The whole group home issue seemed to be behind us though... All interested parties (S, foster mom, caseworker, GAL, group home foster mom, group home licensing agency rep, etc) met about a month ago, and at S's foster mom's request I kind of crashed the party.

Hey... they were having their meeting at a McD's for goodness sake! It's a free country, I can drive up to Brighton (or where ever I was, maybe Ft Lupton) to McD's if I feel like it... it's public place.

Once I'd "dropped in" they kindly allowed me to stay for the meeting. S spent the first few minutes I was there hugging me and crying. She whispered in my ear "I don't want to go" and I said "Then you have to tell them."... and she said "I can't". So I invited the caseworker to take a walk outside with S and I, and I talked to S about it's being ok to be honest with the worker. That it's important for her to tell people how she feels, and what she thinks is best for her... not what the worker thinks is best, or what I think is best, or the foster mom thinks... but what S thinks is best. And she was able to tell the worker she didn't want to move...

We went back inside and the GAL was still hot to move her, so I pulled out all my rusty advocacy skills and did what I could to basically "present" S's case. Finally the GAL agreed to let her stay where she was...

The GAL wasn't happy though.. and during the course of the meeting she was taking no prisoners... she was out for blood. She was angry (as any caring person would be) that in S's whole 16 years of life, NO one has consistently put S first. NO one has fallen in love with her the way a parent falls in love with their child; willing do anything in their power to make sure that child is well loved, and fed, and cared for... and happy. The GAL was right.. and then she turned angrily to me, and said I was no different... I hadn't put S's needs first either.

I hadn't adopted her either.

It wasn't a fair statement. I knew it wasn't... this childless lawyer knows nothing about loving a child enough to know that adopting them isn't necessarily what is best for them, or for the children you've already adopted. I tried to explain... especially about M and the schizophrenia, and how it wouldn't be right for any of the kids to adopt S.

But the GAL cut me off with "Don't make excuses to me."

In a way she was right. In this family, S's needs come after M and R's needs... but I can't change the reality of S's life. I can love her, but can't adopt her... It wouldn't make her life "all better", it would only add layers of drama and upset (sz is like that) that she doesn't need and neither do M and R.

So I did what I could... I advocated for her at the meeting, then came home made her a bedroom here. A concrete symbol of her "place" in our family.

I got a call Monday afternoon from S's foster mom. S had, out of the blue, done something so bizarre, so disconnected, so.......  Words escape me, I can't even think of a word that fits... so, whatever, that her life is forever changed.

The scary part (well one of the scary parts, there are many) is that S doesn't even "get it"... She is so disconnected from herself physically and emotionally that her reaction to the situation was nothing even close to a typical reaction (even for a cognitively delayed teenager). If she doesn't "get" the seriousness of what happened... there is no working with her to prevent it from happening again... or to discourage her from talking to M and R about it.

So I don't think it would be good for her to be around R and M for awhile.

My hearts breaks for S. I'm saddened by what's gone on this week...

... but at the same time I'm inwardly rejoicing that M and R are here... with us... in a forever family... and haven't been bounced from foster home to foster home... getting good care in one... and abused in another.

They've known stability, loving parents, the blessing and benefits of homeschooling... they've been protected.

Protected.

And cared for... as children should be.

I think about what happened to S this week and feel like I'm looking at "what might have been" in terms of R and M.

And I want to grab them both up in hugs and kisses... and hold them too tight... maybe never letting go... and thank them over and over for being my children. (But they would think I was acting weird and worry about me if I did!)

I have such incredibly mixed emotions... can you grieve and rejoice at the same time?

If so.. that's what I'm doing.

o-v-e-r

This week...

-overbooked

-over scheduled

-overly tired

-overwrought

-over eating

-over spent

-melting down all over the place.

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The kids aren't doing well either.