Wednesday, October 27, 2010

Feedback session...

Tomorrow we have our feedback session at the psychologist. SR has said he would like to attend, he has a lot of questions for her. I will bring him. DH, SR and I, on a trip that is sure to echo in my mind for the rest of my days.

The fall has been glorious here, leaves gorgeous. PERFECT. Last weekend my Sister was here, we packed the collective, MIL, my Sissy up and we drove to a local large park and hiked, and enjoyed the sun on our faces, and the leaves. We spent 3 hours walking . A wonderful day. I do wish we would have spent 8 out there though, because today....BRRRR. The wind is vicious, and biting. Farmer's almanac says BEWARE rough winter. This means 6 months on some sort of lock down. This is a shame as DH and SR have been going on very long bike rides. DH riding his bike to work and back, which is 26 miles a day. This has been a good time for him to excercise and center himself. When he gets home, he and SR go on 3-9.5 mile rides. SR is strong, and is loving the alone "guy time", and the freedom that comes with riding a bike. He can choose his path, and it is quiet, he is out of doors which he loves. The biking has been a cool life saver for DH and SR, and has given them a very healthy outlet. With winter coming, they are going to get our YMCA membership back, and start swimming. I have been talking to SR about a possible kids triathalon this year. He thinks it sounds cool. Now that his physical skills are finally at his age, and he frustrates less, the vestibular issues better I need to find things that will challenge him. How we will long for the sun. Time to purchase snow bibs, and boots. I have waited just in case feet grow. I also think flannel sheets are in order, and fuzzy jammies. I loathe the winter.

PN is wonderful, all reports from school went well, she is reading, writing, spelling, and getting along with ALL students. ART is her passion. I am not artsy, or craftsy so this has been a challenge. MIL is artistic and crafty, thank goodness. PN has been decorating the entire house for our HAlloween party this week. She has made centerpieces, gifts for guests, she made a bunny out of a pumpkin. The girl wakes for art, and sleeps art. I am glad she creative, and loves what keeps her little hands busy. She has a great eye for color and detail, something I do not have.

I have had a couple of comments lately, I went ahead and published them, but doubt if I will do so in the future. Knowing a person that happens to have children that are not mine, do not make you an expert. I have mulled every possible option in the last 5 years. Seriously, I have. We even changed our physical address after much research. Our mission now, is to try to help SR understand how he works, how is sympathetic and parasympathic systems are responding and how to get though it. This is not the same child I dealt with 3 years ago, he is figuring it out. He has been making great progress, especially for a child . He managed fine through kindergarten, 1st, and 2nd grades. He has had mentors since his arrival here @ this school, his IQ tests allowed for that. The problems now is frankly SR's asynchratic developement is REALLY showing up this year. His teachers in kindergarten, 1st, and 2nd loved him, and he was little in the way of "teaching", because he had all of those skills. 3rd grade is a challenging year for a lot of these kiddos. 8 is not an uncommon age for a diagnosis.

Anyway, suggestions I do not mind. Calling me CRUEL, that is mean, trollish, and not productive. Those are fighting words, and you can take it elsewhere. There are plenty of places on the interwebs to engage people. You have no idea how I run my home, or what I have done to make it possible for us to function as a family.

Sunday, October 24, 2010

It is official, and no surprise

SR received his official diagnosis Friday. The moment is frozen in my mind, even if it was no surprise to my Husband or I. It is done.

First off how much does the family loves SR's psychologist? We adore her, and I have been thanking God for her for weeks. Funny how God puts you on a path that is winding and confusing, and places such people in your path. She is a blessing. She has made none of this as scary or as painful as I thought it would be. She has made it what it is, and we will try and help SR navigate his way.

Our team met at school, as we always do, with a cooperative spirit. A lot of DH pep talking me, telling me to breath and smile, because I am tired. DH is diplomatic, and quite frankly my fire and his diplomacy makes us a great team. I do not cut loose at these meetings, or accuse people of anything. SR is hard, he does require EXTRA help SOME of the time. I know teachers are strapped for time, I understand all of this. DH are on PTO, so we can advocate for OUR teachers, and OUR children.

The meeting was large, lots of staff present, his science and math mentors, OT, ST, councilors, and anyone in the school we allowed to test him. In good news, our Dr. reported his expressive, and receptive vocabulary were in 99.9%. His fine motor within normal high for age, and is gross motor! This was a surprise to me, and I was expecting his fine motor to be lagging, but it is not. His handwriting is the most beautiful in class, when he is in a good place. When he cannot make an inference or settle his thinking down......shwoop he goes into the sensory place and fast. His stress re: his writing disorder is causing him to hit hyperarrousal fast, and at the beginning of the year we were having him identify his stress and leave the room, recollect and return, then the teacher thought the hyperarrousal, sensory stuff was hoooey so she made him stay in the room. This caused an entire group of new behaviors btw.... All agreed this has been WRONG way to handle this.

So now we are working on an IEP, with several professionals specializing in sensory issues. SR has most difficulty understanding where he is in space @ times, stims, craves pressure, and deep hugs, and of course the SOUNDS, SMELLS, and SIGHTS at school, can be a bit much. When he gets breaks through the day, it seems as though it helps. He has some difficulty in social situations at times, but WOW has he come far. He will also be getting assistance with social learning with others. He will not have to go to the gymnasium in the morning with hundreds of other children because it is overwhelmingly noisy. He can choose to eat in the office with friends as opposed to the cafeteria. DH and I had already arranged his mentors for the end of his day because he was so tired that last year the regular classroom drove him nuts in the afternoon. The mentors in science and math come now @ the end of his day for 60 minutes each. I am thrilled he is learning science and math 1:1 at his level in the afternoon. He enjoys working at his level, and is learning a great deal. He is also building wonderful relationships with his mentors. He will also get to use technology when writing is too much.

So there is more planning to come. I hope the homeroom teacher is on board now. It is very difficult for people to understand SR behaviors and problems when intellectually he seems capable. It is also very hard to understand that anything is wrong or different, because he does adapt so well MOST of the time.

We will continue to work.

Monday, October 18, 2010

the closest thing I have seen that resembles his life...minus the cows

A dear friend of my husbands recently put a bug in our ears about the Temple Grandin movie

I recall watching 20/20, or 60 minutes in the 1980's and Temple Grandin was being interveiwed, I was probably 14 or so, and the only thing I recall is her explaining how she felt better in the cattle holding device. I recall her awkward speech, and volume...and recall thinking how awful. The only other exposure I had to Autism at that time was an article I had seen in a Life magazine, that a relative had collected. It was from 1965, and it frightened me.

When SR was born, I noted he was not typical of normal babies, he startled easily, he cried often, he liked spinning fans, and watching the mechanics of his swings...some of it is documented here....and some things have improved, others have not. I read, and read, and pondered, and read, and thought. SR never fit the criteria that is asked on paper, there always seemed to be answer that included "well it depends". He spoke early, nothing highly reciprical, mostly to communicate his interests or needs, he could identify expressions on faces, he read early, he could reason through some things well above his age.

This week, the words will appear on paper, loosely handed to me. My son will have some sort of autism spectrum disorder. None of the disorders are the same, each child different. There are people that long for these children to get this label, so they can start fixing them. The problem is they are all different, and there is no cure.

It is going to be a long week, and as much as I love my son, and his eccentricities. There are moments I want a wand, or to wake from this dream. Not that autism is a death sentence, it is simply that when you wait for 10 or so years to get pregnant, your goal is not to have an autistic child. That is me being honest. The past 8 years have been hard, and I see no letting up, or break. By the looks of the paperwork, including legal school paperwork, Dr.s paperwork, the myriad of testing forms that have been filled out, the PTO committees, the Tri-care jumping through hoops health insurance paperwork, the exhausting effort of advocating. All of it frustrates me to no end. It takes time.

I just want him to be fullfilled and happy.....

Thursday, October 14, 2010


I have not had a very good week, between parent teacher conferences and the pending diagnosis, and a learning disability....fearing for the future and emotional well-being of my son. Not a good place. My inner Mother bear has kicked in. I have been angry before, but now I am angrier.

The other night while at parent teacher conferences I found out that his homeroom teacher is failing him in all subjects she is teaching him. ALL. This is the first time this has happened. I am not telling SR no WAY no HOW. He is fragile after being in her class this year. The meeting with her, was as cordial as I could make it, because I had to send my child back into her room.

Tonight we met with Art, P.E., music, and the computer teacher. He has moments, but minor. They all enjoy him. Yes even the art teacher, who last year was not on board. She is on board now, and said he enjoys the art part of class, she said he is creative, and participates in class.

I called his coordinator, and she was actually shocked at the various problems his homeroom teacher is having. His coordinator and I have had a rocky relationship, but guess what, she gets it now. I think she understands my frustration, SR frustration, and they get along sooo well. She understands how he functions, and she has had few problems with him this year. She is thrilled he is older and can identify his needs.

This is a teacher problem now. SR's psychologist is mortified by the teachers handling of him, and is making a trip to school (even though she has not done this in 2 years). She herself has high functioning Asperger's, and is married to an Aspergian, and they have 2 children with high functioning Asperger's Syndrome. She is coming in to educate this teacher, and the rest of the staff that has to have contact with him.

Let me add here, SR requires little in the way of intervention, he normally just wants to know what to expect with his day. He does not like surprises. He does not like routine disrupted, but will do fine if you warn him. Most kids can go with the flow with stuff like that, some adults can. I like warnings before my schedule gets nutty. He does not like people breathing down his neck, or pointing out to entire room that he is disobediant, defiant, or lazy. It embarasses him. He is anxious at all times around her, he is on the defensive all of the time.

Wednesday, October 13, 2010

Appealing to her as a Mother

Parent Teacher conferences for SR last night.

A complete wash if you ask me.

We told her about chemistry day. She said "was it too loud for him there?"

I answered her "no".

And then she pretty much folded her arms, and implied, that the sensory issues we are claiming to have is false, and only when he isn't doing what he wants to do.....

Seriously? Seriously?

I explained hyperarrousal again, and again...I took it apart for her.

I could see her face, and body language.

She thinks she is simply dealing with a child who has a problem with authority and defiance. She also thinks he is being lazy.

I do not understand why she cannot see this.....

Monday, October 11, 2010

Why chemistry day was soooo important, and needed.

So far this year, SR has heard little encouragement. Long story that I might delve into in this post, forgive me if it seems disjointed.

I asked him to blog on his blog re: Saturday, and this is ALL he wrote.

A few days before this was posted (you can see that, right?), I got 2nd place (vs 1st) on the QuizBowl, threw a fit, but I did not know that I would get something more than 2x as expensive as the prize,a IPod Nano. I was extremely happy.

That made me sad, because he did not see the entire picture only that he got 2nd place. Also let me add, when he found out he got second, DH had to escort him out for a moment, because SR was VERY upset. (HE HATES loosing, beyond normal "I hate to loose". ) He is a perfectionist of the worst kind. Think John McEnroe style meltdown to the 10th. We have tried and tried most everything re: loosing.

DH and I tried to explain him that these other kids were at least 10 years older than him, and they had studied for longer, they all knew what a quiz bowl was...etc. I mean the kid walked in there cold. He had never sat in a lecture, let alone an entire day of lectures.

It did not matter, he was upset he did not get 1st place, and then he was upset that he melted down. The melt downs embarrass him. We almost had them under control until the school year began. Let me add here, he as a rule, does not melt down at all for us any longer. I cannot think of the last time. I just asked DH, and he couldn't think of any either.

However, since 3rd grade, is all about "writing", and because he has what either is dysgraphia or an expressive writing disability the melt downs are almost daily. Since SR has sensory issues , it seems as though they worsen when he is feeling anxious or pressure. Last year we worked out a system, were if he felt he was going into hyper arousal mode, he would show the teacher a yellow card. The yellow card allowed him to leave the room, go to an adult in an office, calm himself, and he would return. This year the teacher decided the yellow card was a bad idea. She thought it was rewarding him for leaving class. She made him a table in the corner of the room, and told him he could go there. So now when he is getting ready to meltdown, and to hyper arousal town, he has to do this in front of his classmates. VERY embarrassing for him. He does not want the meltdowns. His teacher think he melts down to get out of work, this is not the case. His sensory issues cause him to HEAR pencil on paper, he will tell me, it is the worst high pitched screeching sound. (Watch the Temple Grandin movie, and watch the first 40 minutes, listen to people writing, dishes being put on a table ) He also has to concentrate SOOOOO hard on the act of writing it is ridiculous to him, he has trouble picking the direction of content, and wants to present the PERFECT and best assignment. I have him being assessed at school right now by the sensory people, and OT staff. We are aslo addressing this with his Pyshcologist who has Asperger's herself. Every time SR goes to tell her "not good, yellow", she tends to give him a speech about how he is being disobediant, defiant and disrespectful (in front of his class), this makes the meltdown worse, and then the teacher is left with an 8 year old mess of a child. If you hear you are defiant daily, what happens to your behavior? I have begged them to let him have a safe place to melt down. A room full of 8 year olds is noisy. When I argued this with the teacher, she told me I had no idea how she ran her class, "I play music, it is quiet" HER she does not understand that he is WiRED differently. The classrooms are open, no doors, 870 kids in the school. He can HEAR everything, and does.

It bothered me that he did not see how amazing he did. He really did not think it was that big of a deal. He was upset that he did not WIN, and upset that he was upset that he did not win.....

Sunday, October 10, 2010

UNL Chemistry Day 2010 quiz bowl 2

And he amazes me

Chemistry Day was celebrated this past Saturday. DH took SR. I soooo wish I would have gone, and gotten to see SR enjoy the day, because he ENJOYED it immensely. He got to tour labs, watch experiments, and hang out at a college for the entire day. He was comfortable, and did well.

They had 2 activities through the day, one was a scavenger hunt, the other was a chemistry quiz bowl. (Note here those participating were high school students, or undecided college students thinking about chemistry. There was an 11 year old home schooler there as well.) I figured SR would shy away from participating in the quiz bowl. Why? SR has had no formal chemistry class, none. He is in a 3rd grade classroom.

About one year ago, DH and I bought him his first chemistry book after parent teacher conferences, we stopped at a book fair and picked him up 3 small books on chemistry, physics, and biology. Within 2 1/2 weeks he memorized the periodic table, and read the book over and over devouring it, learning everything. I went out and found him another book. It seemed difficult to find a chemistry book that would help his visual spatial style of learning. He read that too, and for the next year I was bombarded with all sorts of questions I could not answer. I took chemistry and did poorly, managed to much through, but managed to know just enough to squeak through. I never intrinsically understood any of it. Google is my friend. I was so excited for him to be around chemists that could actually answer his questions.

SR loved chemistry day, participated in the quiz bowl, (not all participated) and managed to get 2nd place overall. The winner had 22 points, SR had 15, and 3rd place had 11. SR got second place, at 8 years of age after reading 2 chemistry books. AMAZING...seriously SR 's brain amazes me. I also promise it is not simple rote memorization, the child UNDERSTANDS how science works, he understands interdisciplinary approach to science. He adores science and calls it his "quencher". It is the only thing that "quenches me"....

I am waiting for DH to load the videos from his phone. Because the kid was COMFORTABLE, and FINE. Something I think his 3rd grade teacher needs to see as well.

Now I need to figure this I ask the district to go ahead and send him to high school for high school chemistry? He has proved he can manage the material....

He needed this, his teacher and he have had a difficult year. She needs to know why.

Thursday, October 07, 2010

YAY Thursday

We made it, well almost. Knocking on wood.

Tomorrow is Friday, and thank Goodness for that.

Still working on the dysgraphia. Please tell me in 2 years I will not speak of dysgraphia again. I have discovered MAD LIBS are a great way to get a kiddo to write, beyond that....not so much.

Wednesday, October 06, 2010

Photo rundown from the last few months, you can watch them grow

Random photos from summer, it has been a while since I posted any. The past 1 week....awesome for us. One bad day for SR today, the semi meltdown had to do with writing. PN started Daisies last night, SR continues with Scouts. DH was a peach and took them both to the outings. I did take SR on a long bike ride. About 4-5 miles. It was a gorgeous night for a ride, beautiful sunset. DH also managed to sweet talk the University into letting SR attend Chemistry Day. This is normally an activity for high schoolers looking for a college. We get turned down a lot from these types of activities, but not this time! YAY it is this Saturday. I am TIRED. Not tired, but TIRED. I too started the melatonin when I need it, and it has done me well. I have always suffered from insomnia, ever since I was small. However I find at this time SLEEP is imperative to my well being. I have lived on 4-5 hours of sleep for about 8 years. It cannot be good for a person.

Kiddos at Mount Rushmore, they really had a fun time. We all did. first REAL vacation. Coolest part? Kiddos are big enough to pack, and carry own suitcases, no fighting in 17 hours in a vehicle!

DH and SR in Deadwood. The Collective were good there too, and even humored DH and I by wearing costumes, and getting a wild west photo taken.

After 7 hours in the car, we made it to Scottsbluff, not much there but Chimney Rock, one of the premier sights to be seen re: Western expansion of the states. the kiddos were not uber enthused, I was. Here is a photo of us getting attacked by giant flying, and biting ants. ITCHY.

The kiddo that took forever to like fireworks, because of sound, etc, loves them! Here is SR up in my hometown getting ready for fireworks with the entire family.

My beautiful neice, and the Collective at 4th of July at Grampanios. I love these little faces!

Saturday, October 02, 2010

time zones

I am on the road, and at Mountain Home AFB, Idaho for SpouseBuzz Live. Of course I awoke @ 4:50am, bright eyed and bushy tailed. I am hoping things @ home are going well, and the kiddos will enjoy their weekend. They got to go out to eat last night, and it was movie night.

I am here in the company of my SpouseBuzz family, and if you can imagine we have been doing this for almost 5 years. Where does time go. I needed the time to catch up with folks. I am not good at sending notes, or keeping in touch with people. All of these ladies have a good sense of humor, even amidst personal crises and pain....which is inspiring. I need to laugh, because really what else can one do?

We visited the new Psychologist for a second time the other morning for an adaptive reasoning assessment for SR. Let me say this, I am thrilled we canned the last shrink. A really unimpressive Dr. The new Dr. is being deliberate, and seems to get it. I do wish DH and I could answer the questions more easily, but all of our answers were "it depends", along with a story or two about why. It took 45 minutes to get 1/2 way through. She was patient, and seemed to intrinsically understand.

SR likes her, and trusts her, and hope she understands him, he feels misunderstood at this point. Part of him is an adult trapped in a child's body, and he is frustrated when adults speak to him in a condescending fashion. She does not, and in fact I let SR answer many of the questions for the Dr. because he was able. In bad news this is being done so deliberatly and slowly, that the school seems not to understand what in the heck is going on. They want to know a diagnosis now so they can "do something". Really, a diagnosis determines what you do, instead of your years of teaching experience? I could go on and on.

I do miss my family this weekend, and will be returning home tomorrow.

enjoy your weekend.