Rob's Phone

i like to look on Rob's phone everyone once in awhile at the pictures he's taken.  i don't know why, i just like to see what he's taking pictures of.  sometimes there are some gems in there, so i thought i'd share a few (or a lot).

twins

congratulations Judy, you discovered how to get under the bed

dad's socks are the best

Jude loves her dad, and i'm pretty sure the feeling is mutual

congratulations Judy, you are a bigger nuisance than your brother!

nothing going on here

again, you're just proving my point

oh look, he's even got one of me in there

Xander's "patchy-patch".  we made it for his cousin but he wouldn't part with it

HAPPY!!

cool hike

Judy can work ANY accessory

i promise 2 minutes before this he was having the time of his life

work it!!

planking... i mean sleeping

we love to camp!!

AND I AM A MONSTER!!

Temple Grandin

want to step into the mind of someone with Autism?  watch this movie.

eye of the tiger

well summer officially ends at our house when Robbie goes back to school. the days are still hot, but it just isn't the same when Rob isn't home running things at the campground. we are happy the campground is over (well, pretty much over). it is nice to get back into a more regular routine for the kids. especially Xander. he's had cabin-fever for a few weeks and has been anxious and excited to get back to school.

we had pre-school orientation yesterday, and i was lucky not to have to take Judy with us. that pretty much would've spelled disaster. but things are looking really good for the school year. after orientation i had to sign some things for Xander and we had a quick meeting to talk about what they had planned for him.

it was really cool. his speech pathologist was there, along with the lady we had been seeing all summer to work on behaviour, the pre-school teacher(s) and the learning support teacher. they all had a chance to interact with him since basically not really seeing him since june and were commenting on how much progress he's made over the summer. and he has. it was really nice to hear all the good they had to say about Xander, and to feel like they were all in your corner and enthusiastic about his school year.

we are really excited about this year. since Xander has had his diagnosis for Autism he qualifies for a lot of funding through the school for extra help. so, on mondays and wednesday's he gets to go to pre-school just like all the other kids his age. he may even get to ride the bus home. then, on tuesday's they will take him to gymnastics. this will help him learn to cope with being more flexible and transitioning from one activity to another (oh yea, and what 4 year old doesn't love gymnastics?). then on thursday's they take him to equine therapy. equine as in horses! so cool. he'll be doing activities with horses that will help him with speech, behaviour, ability to follow instructions, etc. so he'll pretty much have a full week. but we're ready for it!

i can't say enough about the people who have been involved with our path leading to this point. everyone has been stellar and perfect for Xander. i can't imagine what it would've been like if we hadn't decided to give Mountain View a shot. we truly feel like we owe all the good things that have gone right in our lives to being here in Mountain View. especially Xander. it makes a big difference when you feel like the people working with your kid love him as much as we do. and that played a key role in deciding to stay here.

right now i can't see anything but good things for the coming school year. a lot of progress will be made. we are ready!

My Jude

my best girl in the whole world

the way it is

i'm not the one dealing the cards. i just take what i'm dealt and am grateful i'm even allowed to play.

that being said, Xander's report from his assessment with the school Psychologist came in yesterday. 10 or so pages of everything you would ever want to know about your kid. IQ, strengths, problem areas, etc. and right there in black an white- Diagnosis: Autism Disorder.

and you know what? i wasn't surprised by it. everything leading up to this has felt right. like it fit what Xander was going through.

when i picked up the report i talked with the school Psychologist for 30 or 40 minutes. we discussed his testing results and some idea's for prognosis. as far as IQ goes Xander tested everything as "Average" which means he is exactly where his peers should be. there were a couple sections he scored a 12 out of a possible 12, putting him well above average. but his overall score was encouraging. often times with autistic children testing results are a lower estimate of what their true IQ is. this can be because children with ASD have a hard time with standardized testing environments (as was the case with Xander). the school Psychologist felt as though his results were perhaps a lower estimate of Xander's true IQ.

the school Psychologist also talked about how sometimes a child with ASD can exhibit certain talents or abilities that go way beyond the abilities of a "typical" child's. he expressed his suspicion that perhaps Xander's excellent memory will be a unique talent to him, and he is curious to see how that will impact his school life.

overall i don't think we are really worried. Xander is very high functioning. remember, the spectrum for Autism is very wide. for those who are on the opposite side of the spectrum the life of the child and parent can be very difficult. we are very lucky and blessed to have Xander for our son. like any kid, Xander is a package deal.

i've been reading a great book about ASD called "Ten Things Every Child With Autism Wishes You Knew." so in the style of that book (and taken from that book), here are some things Xander wants you to know about him:

• I am first and foremost a child. I have autism, I am not primarily "autistic". My autism is only one aspect of my total character. Are you someone with thoughts, feelings, and many talents? Or are you individualized by one trait?
• My sensory perceptions are disordered, so sometimes I react to loud noises I don't like. I don't filter sensory input the same way you do. In fact, I don't filter it at all. While in the classroom you are able to focus on what teacher is saying because you have the ability to filter out the other noises. But I not only hear the teacher, but also the buzzing fluorescent lights, the pencil sharpener, the copy machine, the fly buzzing in the window, typing on the computer. Hearing all these things at once sometimes makes it difficult to focus on what you're asking me to do. And sometimes it means I just don't hear you at all.
• Please remember to distinguish between won't (I choose not to) and can't (I am not able to). It's not that I don't listen to instructions, it is that sometimes I don't understand what you're asking me to do. Please approach me and speak directly to me in plain words telling me what you want me to do and what is going to happen next, that will make it much easier for me to comply.
• I am a concrete thinker. This means I interpret language very literally. Don't tell me something "is a piece of cake." I will only get mad because you mentioned cake yet you haven't given me a piece to eat. Idioms, puns, nuances, inference, metaphors, and sarcasm are usually lost on me.
• Because language is more difficult for me I am very visually oriented. Be prepared to show me several times how to do something. Telling me with words isn't enough. I think in pictures, so showing me a picture of what you want me to do can be very helpful.
• Please don't lower the bar for me because I live with autism. My potential is limitless.
• Please help me with social interactions. Sometimes I don't know how to insert myself into other kids play.
• Try to look past what you may see as limitations and see the gifts that autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat, tattle on my little sister or pass judgement on other people? It's true that I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism, too.

gotta recharge every once in awhile

FACT: we have not been on a summer family vacation in 3 years

FACT: working at the campground consumes our lives in the summer, children get neglected, husbands are rarely seen

FACT: work related issues at the campground have been less than ideal for a couple weeks, stress levels were high, and the bounce was nearly out of our bungee

FACT: beyond our wildest dreams, we ditched the campground chaos, got a temp (Larry), and high-tailed it to Lake Blaine for VACATION!!!!!

4 glorious nights away. and thank you to Larry and Dan who ran the campground while we were away.

sometimes you just need to get away. as robbie and i were discussing the possibility of going we both felt that a few days away would recharge us, and the light at the end of the tunnel (labor day long weekend) wouldn't seem so impossibly far away. don't get me wrong, i love the campground. but the appeal of running it every summer (with 2 small children) is beginning to wear off.

so we've been away, and are now back. i couldn't be happier with our little vacation. it was phenomenal.

this is where we spent most of our time. the "relaxation station". thank you costco! (even though it sprung 2 leaks on the second day, we patched it up good as new) it was perfect because it has a mesh bottom in the middle so Judy could still play in it and not die. Xander loved it! i couldn't believe how brave he got while we were there with swimming. he can tread water in a life jacket and dog-paddle on his own no problem now. just seeing the huge smile on his face and him laughing at how fun this was made my day. you just can't put a price-tag on that. Judy wasn't as brave and didn't want to get in the lake. she barely tolerated the life-jacket she was forced to wear 99% of the time.

Xander liked the canoe quite a bit. the sea-doo was too loud for his liking. this was just his speed.

Xander kept saying "Happy Canada's day!" it was really funny. i don't know where he picked that up, we didn't do any major Canada day celebrations.

then when he got out of the canoe he held out his hands and said "can i have my trophy?"

then put his hands in the air and said "i won! i won!" apparently he was in a race.

Judy really liked the sea-doo. she is more adventurous than Xander. plus she doesn't have issues with loud noises. although we did get Xander on the sea-doo twice. we purchased some noise reduction ear-muffs for Xander which helps a lot with his sensory issues. but the second time he went on he smacked his head on the steering column when they went over a wave and that was the end of that. they had to idle all the way back from across the lake. it took them awhile.

we had a most excellent time away. i can't wait until we can spend even MORE time doing things like this. maybe next year? well, that is a long ways away. but i would be all over that!

on another note here is some of the things i love about my Jude. since i've been writing a lot about Xander lately, i've decided Judy could use some attention.

• she is determined. if she gets something in her mind she doesn't stop until she either succeeds or fails. and failure usually isn't an option.

• she has fallen off the table at least 3 times, her high chair 2 times, regular chairs (including sofa's) at least a dozen times, and has only fallen down the stairs once but that was because Xander pushed her (for which he was punished severely). all those tumbles and it still doesn't stop her. either she is brave or all those falls have made her stupid. the jury is still out.

• she wants to be with "the boys". when Rob and Xander are doing things together, she's got to be right in the mix. not being allowed in on the fun is literally heart-breaking for her.

• even though she spends half the day climbing and falling off of things she is still a little bit of a chicken. she doesn't love to be tossed around, unless by her father. heights make her nervous. go figure.

• Judy's only word (other than mama/dada) is "more". which sounds like "MUH".

• she eats anything i put in front of her, which in contrast to Xander is a huge relief.

• she loves her brother.

• she has a very sweet nature and will grow up to be a very easy going girl.

the road less travelled

been thinking a lot about ASD lately, and been doing some reading too. the more i read on it the more i think that Xander is who he is, ASD or not. that it isn't a disease therefore you can't cure it, only learn to live with it. that somewhere along the line maybe Xander decided to take a different path through life. not bad or wrong, just different. the poem by Robert Frost comes to mind:

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveller, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I--

I took the one less traveled by,

And that has made all the difference

White coat number one

since i've been home from Nepal it seems like it's been week after week of appointments for Xander. first the occupational therapist in Pincher Creek (where he had an EPIC meltdown), then another referral from the occupational therapist to Children's Services in Cardston, then an end of year IPP with the school, and finally an appointment with the school district's psychologist. it seems like the farther with get into it my heart breaks just a little bit more for him, but i also become more assured as well. it is a very polarizing feeling.

last week Xander had an appointment with the school district psychologist. i was sort of anxious about it since it was last minute and at one of the last appointments we had i literally... not figuratively... LITERALLY dragged him out of the appointment. Xander has little to no tolerance/patience when it comes to any kind of sit-down testing environment. so when they called that morning for an in-home appointment that afternoon i was worried Xander didn't have enough lead-time in order for me to prep him for the visitor. i won't say who the psychologist is, I'll just call him Mr. B. but he is the son of my family doctor growing up and is one of 14 children. that may narrow it down for some of you.

well the appointment came and luckily judy was down for her nap. the less distractions for Xander the better. Mr. B had his attention right off the bat with a stuffed turtle puppet called Tom the Turtle. Xander introduced himself as "Xander 'Chocolate' Van Orman". he and Mr. B sat across from each other at the kitchen table. i was worried when Mr. B got out his big binder of testing materials. i honestly thought "oh great, once xander see's that it will be all over." but xander actually sat and did the testing! i couldn't believe it!

the testing started with naming object. in the binder where pages with four different (but related) pictures on it. from the four pictures Xander had to identify one. for example, on a page that had a picture of an ear, eye, nose and mouth the tester would ask "show me the nose" then Xander would have to point at it. Xander would point at the object, but then want to name all the other objects as well, which isn't strictly the protocol of the test but Mr. B just rolled with it.

they did A LOT of naming objects. and from what i could tell (i was instructed to leave during the testing), xander pretty much aced it. it wasn't very often that he didn't know the object he was being asked to identify AND the others on the page. then it got a bit more tricky. he was asked to identify more "abstract" things. things like: curly, shaggy, fast, wet, etc. i think he did okay on those. but some i think he just didn't know.

then Mr. B brought out some little red blocks. Mr. B would arrange the blocks a certain way, then ask xander to do the same with his blocks. Mr. B would time him too. Xander liked the blocks a lot and was sad to have them put away. in fact, xander got so upset that he left the table and pouted on the couch. he didn't have a melt down though. just pouted on the couch. so we had a break, he had some ice cream, then he was ready to go again.

Xander then had to answer questions. questions like "what are the colors of the rainbow", "what finger is this", "name me some animals", to which Xander answered by making the animal noise THEN named the animal. for example "oink oink oink, a PIG!" i don't think he got bonus points for knowing the animal sound. he knows all the colors of the rainbow, but wouldn't answer that question. and when asked "what finger is this" he said "one" but the correct answer was "thumb". but i think he should've been given half points since when xander counts on his hands the thumb is always number one.

xander was also asked "how do you stay dry in the rain" to which he kept insisting "you get WET in the rain". the correct answer was obviously "umbrella", but you've got to admit that xander's logic makes sense.

there were also some puzzle type "games" then a interview/questionnaire with me. we covered a lot in the questionnaire. we talked about xander's elephant like memory and how he's been doing in pre-school, etc.

Mr. B asked if the speech pathologist had said anything to me about what she thought might be going on with Xander and I said "yes, ASD" (autism spectrum disorder). he said, okay, and that he was seeing a lot of the same things that would point to that. these are the points that my heart generally breaks a bit. but he also gave me some very reassuring feedback. cognitively xander will likely not have any setbacks, whereas many children with ASD do. many children with ASD are NOT high functioning, whereas xander appears to be very high functioning with no physical or mental disability. Mr. B said not to be surprised by anything in the future for Xander. Mr. B also expressed his thoughts that Xander is absorbing a lot of information and has a lot going on up there (in his head). Mr. B said he needed to tally the test results, but he was fairly certain that xander's vocabulary was better than average too.

so what does it all mean??

i don't know. i'm still trying to figure it all out. and maybe in the long run it will end up meaning nothing.

but this is the way i am seeing it now: every kids grows up with an obstacle, and this one is xander's. but it is only and obstacle, not a dead end. there is a way around every obstacle in life, and this one will be no different. his obstacles will be in the social/behavioural realm.

Xander has made leaps and bounds since he started pre-school. he couldn't have done it without his teachers. i am excited to see what another year of pre-school will do for him!

that is his preschool class on their field trip in waterton. Mrs. N is Xander's aide (holding his hand), then Mrs. F and Mrs. W the pre-school teacher. they have been awesome and Xander loves them so much!

Xander has a Dr's appointment (Dr. Harilal) the second week in August. Mr. B will be there and this one, i guess, will be for diagnosis/prognosis, etc.

since i've been back

things didn't take long to get back to "normal".

if there is ever a nice day, we take advantage.

we've been checking the campground washers. this one is working well.

xander had his first "field trip" combined with the kindergarteners. guess where this was taken at?

my brother had a birthday. the individual who iced his name clearly has some pretty mad skillz.

judy has discovered puddles!

our new favourite way to get around the campground.

while i was away

rob kept the kids pretty busy while i was away. everything sounded like a lot of fun, and was i sorry to miss it. here are some pictures of the festivities...

the morning after i left. apparently clothes became optional.

dying eggs, always a big hit.

LOTS of rides in the bike carrier.

first pony tail?

xander and judy had a great time with grandma and grandpa! thanks for helping rob!