Sunday, March 30, 2008

detailed class

Finished William and Barbara Christopher's book, "Mixed Blessings." I would give it a 5 star rating...out of 5. Here are some classy people. They go into great detail about what daily life was like for them as they raised their adopted autistic son. I would highly recommend this book for people who want to know what it's like for families of handicapped children to do simple things, like go out to eat or hang out at home for a day. They also go into detail about dealing with "educators" who don't believe their son is in there...I can relate! However, Ned, their son, is actually more of what I think would be called Asperger's syndrome, which is a type of high-functioning autism. He is immensely intelligent, but very easily distracted and has many autistic features. They went through the ringer trying to find medications that worked for his behaviors. Of course, I bawled through much of it, since I totally understood where they were coming from, but I think anyone could get it, based on their wonderful style of writing. The funny part, for me, was when they would have people staring at them while Ned was having behaviors and throwing tantrums, and then the same people would walk up to them and ask Bill for his autograph...what a strange reality for them. Who knew Father Mulcahy was going through all of that drama at home while starring in the best tv show of all time....(my opinion). There are just so many lessons to be learned from the Christopher's. What a marvelous family and what wonderful stewards for their son. We should all have so much grace and patience!

Friday, March 28, 2008

Spuh-ring

Sparring...Sparing...Spurring...Sproing...Spring is taking it's suh-weet time this year. Yes, I know it's still March. Yes, I know we can have blizzards up until May. But, come on, can't we have some decent weather at some point? It's getting old! Of course, my mood may be tempered by the fact that I have Mas home for his spring break...perhaps picking up 100 malted milk eggs off the floor (some of them having been sucked on, and then spit out for some reason) because I dared to check my email yesterday may have colored my opinion on the weather. We tried reading books yesterday, which mostly results in lots of frustration on my part and lots of trying to get away on his part...we sat on our bed with a flashlight, but that only lasts a certain amount of time...watched some Sesame Street and El Tigre...I opened and dispersed at least 20 mini packs of teddy grahams and fruit snacks...we tried pottying with underwear alone, underwear with pull-ups, and eventually just pull-ups...I cleaned up (and ignored, as per his last IEP) each incident of spitting we had, which probably numbered in the 30s...we took an excursion to Brookings lastnight with his sister for pizza...and laughed at my husband when he meekly offered this nugget: well, tomorrow is Friday. :o) It was a long day! At least some nice weather would open up the option of going outside for a change of pace. We'll see what today brings as far as weather is concerned.

Wednesday, March 26, 2008

others on the path

Am reading William Christopher's book "Mixed Blessings" right now...that's Father Mulcahy to you. Am also reading Robert Rummel- Hudson's book "Schuyler's Monster". The reason for two books is simple...bathroom reading and living room reading! Duh! :o) (Am also reading a book about the Kindertransport, which is heartbreaking and can only be done in shifts, and doesn't apply to today's post...but, a great book nonetheless!)... It's always fun to read about a topic that totally has my interest. Hudson's daughter is non-verbal, like Mas, so that definitely piques my interest. Christopher's son is apparently somewhere along the autistic spectrum, so that is also interesting. It breaks my heart to read things that are similar to what we've gone through. Makes me wonder if I should have been writing a book all along. We caught a short glimpse lastnight of "Autism: The Musical." Don't have enough of it watched yet to offer up any opinions. It is interesting to watch the clearly labeled autistic kids and say, "Yup, that looks familiar," and "Nope, that doesn't look familiar." The last discussion with our geneticist in Omaha was him telling us to be sure not to let anyone call Mason autistic, since he may have autistic tendencies but there is definitely something else going on there. I will always remember how earnestly he made me promise to make sure that didn't happen. I remember Riley having way more autistic features growing up than Mason did at the same time: As a baby, you could pick Riley up and talk to her and she would turn her face away from you, also, she didn't begin to speak until she was 2 years, 3 months old. I also have many pictures of her "setting up" her toys, cars, animals, etc., in perfect little arcs and not wanting them disturbed. She also used to "wiggle" with her stuffed animals and not want us to watch her, which was clearly self-stimulating behavior, but I had never witnessed it before so was unsure what was going on. Of course, Mas has his share of strange behaviors, too, but was definitely more social as a baby/toddler than Riley was. It makes me wonder if Riley had tendencies that way, too, and how she dropped them, or what we did to help her get past that. Of course, Mas has clearly obvious brain damage on MRI, (which doesn't correspond to the label of autism), and also has had highly elevated lactic acid levels and an incredibly high lactate/pyruvate ratio, as well as many tiny things wrong with most of his bodily systems. So, some obvious causes to his delays. All this reading makes me yearn for a "group" to belong to where I could compare notes with someone and have someone to bounce ideas off of...as it is, the parents of undiagnosed children don't really have a nice tidy box to live in and socialize within...we just have lots of wishes for a diagnosis so we can move on. But, reading about others on the path sure makes the journey seem somewhat lighter. I'll let you know what I think about all of this reading once it's done.

Thursday, March 20, 2008

not quite spring, not quite winter

Well, I haven't posted because I've been in environmental limbo...nice one day, rainy the next, nice again, then snowy, etc. It's the midwestern gray zone that happens right before spring erupts. Not a very fun time. But, it should make us appreciate our spring once it's sprung. Other than muddy dog paws and not knowing what type of coat to wear, things are pretty status quo around here. One interesting thing of note is that Mas had a bagpipe and drum assembly this week and the teachers tell me he loved it! They said he was clapping and laughing throughout! I'm starting to think there's more of a musical inclination in him than I used to think there was. In other news, Riley had her conferences and we heard how "wonderful, kind, nice, smart, delightful, and gorgeous" she is...we are assuming now that her teen behavior is saved for us here at home! Seriously, though, it was nice to go talk to her teachers and hear such great things. Makes us realize she must listen to at least every third or fourth sentence we tell her. Other than that, just wishing our entire backyard was made of concrete so there were less paws to clean! Here's wishing everyone a great Easter and some signs of spring!

Tuesday, March 11, 2008

what it is

And so I post this afternoon feeling as though a gremlin has crawled into my nose and filled my nose with concrete. Fun! There is no other way to describe it. A crushing feeling of solidly packed sinus cavities. I gave in and started antibiotics that we had laying around here...not the best way to do it, but practical in this town, where getting in for a same day appointment is next to impossible. I realized my sinuses have been not operating at maximum efficiency for about a month now. Maybe this cold one day, warm the next weather pattern is not doing us any favors. On the good news side of things, Mas seems to be over the hump with his pneumonia. He even grabs the dinosaur nebulizer mask now and puts it up to his face to let you know he wants a treatment. Pretty funny! He is still coughing a little bit, not as much as Friday, though. He is acting about 95% normally and I think he is responding to his antibiotics. What a relief. We threw caution to the wind and went to Minneapolis this weekend anyway, and he enjoyed the pool and hot tub. He was a trooper and did so well in the hotel room and with sleeping on his little blow up bed on the floor. Riley had a good time shopping and we found a consignment store in the Roseville mall, so even better for her! She found some treasures there. Howard ordered a replica of his muskie, so in 6-8 months we'll have a visual representation of what that baby looked like. It's pretty exciting to think about. I told him once it's stuffed, I am hoping to catch a 50 incher, which would beat his fish by 1 inch! HAHA! That's probably the only way to catch a 50; to stuff a 49! Riley and Mas were each given hats by some of the guys in one of the booths; Riley's is gray and pink and quite cute. As for me, I bought some pink lures, (due to my success with pink lures last year) and also enjoyed browsing REI and Cabela's. It makes a person want spring, that's for sure! Being around all that fishing stuff was difficult for me; can't even watch fishing shows now without wanting to break out the boat and hit the water...oh, wait, there is no open water yet. I am ready for my first cast, though, that's for sure! We also enjoyed our favorite German restaurant while we were there; will post pics from there later. We found out Mas loves accordions! He couldn't get enough of the accordion player! He even clapped whenever he heard it and it wasn't right by us. His grandpa Jim plays it, so we'll have to have him give Mas a concert sometime. We had a great weekend! I think it was the most fun we've ever had in Minneapolis. YAY!

Thursday, March 6, 2008

weapons grade bugs


It's been a long day of doctoring, medicines, pharmacy visit, treatments, blood draw, x-ray, arghhhhhhhhhh. Mas has a little spot of pneumonia in his right lung, following a bout with what we assumed was influenza A last week. (Of interest is the fact that when we all fought off influenza A two years ago, he followed that with 3 bouts of pneumonia, so hopefully this isn't a new postviral trend for him...) He has a classroom of 5 kids total, and two of them swabbed positive for influenza A, and the other two had upper respiratory viruses that their families chose to treat like the flu. We had symptoms last Thursday and decided to go the tamiflu route. Mason's cough changed from a dry, annoying cough on Tuesday to a phlegm-y, productive cough, which I kept telling Howard sounded like pneumonia. Moms know! He woke up this morning just screaming, cheeks bright red, not wanting to walk to the bathroom, etc. We made an appointment for 8:30 and he had a blood draw and chest x-ray, and they also swabbed for the flu. The swab was negative, the blood draw showed an elevated white count, and the chest x-ray showed a spot of pneumonia. While we were waiting for various tests/results/scripts, he laid on me and moaned with red rimmed eyes with purple lines underneath, with his temp of 102....excruciating. He was wailing like he was an animal for awhile this morning...would have been a nice time in his life for him to be able to tell us what hurt. Since Mas usually runs 96.1, 102 was a sizable fever for the little guy. It is always humbling to go to the doctor when he is sick...lots of great people helping us today, and it's always nice to know that safety net is available when we need it. It hit me today how odd it is that he is 10 1/2 years old and only weighs 54 pounds...a comment from one of the nurses about that jolted me back to reality that this is not a normal weight for a kid that age! Anywhoo, wanted to post to let those who "know" us know that we are all doing well tonight and Mas is starting to look somewhat better. Always a relief to see him rebound on his own...everytime he gets sick I wonder if this is the time he won't get better, so to see an improvement already is a huge blessing. Rest assured he had many hugs today and spent most of the day on mom's lap, even taking a NAP on me at one point. (Those of you who "know" him realize how wild that news is!) Even his 13 year old sister stopped at the chair tonight, grabbed his little hand, and said, "Aww, bug, how are you feeling?" Made her mom tear up inside!! Please send good wishes Mason's way for a speedy and complete recovery!!

Wednesday, March 5, 2008

1-3 inches

That's what the weatherfolk said...1-3 inches of new snow possible...most likely people will just see around an inch...nothing to get excited about...what a bunch of liars! HA! We had a very healthy and pregnant-looking 3++ inches of snow, which I shoveled out of our driveway by hand this morning...no sissy snowblowers for me. I wanted to see what 1-3 inches of snow looked like. I think these people need to try their hand and guessing people's weight at the county fair or going on the Price is Right. Argh. The guy who loaded up our dumpster garbage said, "I thought we were done with this!" Me: "I thought we were, too!" Him: "I hear we're supposed to get more early next week." Me: "Great!"...as I bent over to load up another shovelfull of the white stuff. The best news is, we are only about 2 months away from no more snow...isn't that a lovely thought?

Tuesday, March 4, 2008

age

This is Howard's grandma, Phyllis Friman, at her recent birthday party.
Just thinking about how Riley said to me again the other day, "I don't wanna get old." I had to agree! But, as Howard's grandpa always used to say, it's better than the alternative. I try to remind her we will all be old, someday, God willing. She uttered this comment after leaving the nursing home to visit her great grandma. I remember going to visit my great grandma at the home in Watertown. My mom had a small set of mini pens that I was only allowed to play with while we were visiting her there. I can remember we would walk into the home and I would always think it was the scariest place with the scariest people. Now, I realize all of those "scary people" are actually People, with stories and histories and hobbies and favorite things and issues. It's much more interesting to view them this way. It's so hard to see 89 from 13, isn't it?

Monday, March 3, 2008

"Mom"

Mas has this cool contraption called a "Go Talk." It is an augmentative communication device with about 20 pics per sheet of laminated paper, and about 5 sheets of paper so far. It has the obvious things on it...potty, supper, drink, tv, toy, book, Riley, grandma, auntie, etc. The one button on there that he's been pushing lately is a photo of me, and there's a recording of his speech therapist saying, "Mom." It's spoken really quickly and shortly, and sounds cute, like a little boy saying mom. I wonder what it would sound like if he were to say mom? I often wonder what his voice would have sounded like. Sometimes, when he gets into a gut-busting fit of laughter, some sounds come out and I wonder if that's what his voice would be like. He also has his usual sounds he makes that can give someone somewhat of an idea what his actual voice would have sounded like. For now, it's someone else's voice doing the actual talking, although it's nice to know he likes to push 'my' button once in awhile!