Wednesday, October 24, 2007

Anxiety by Proxy?

Just a quickie today....it's beautiful outside and I need to get out and enjoy it (before the weather changes, again)!

Yesterday we took another small step forward with Mr R....I pulled him out of school early to go and take his Written test to get his Learners permit. This whole thing has been a long, slow but very calculated process for us. I have GREAT concerns about him driving.....but as with all things with our kids...we have to let them try. My greatest concerns for him are:

His attention/delayed response level
His low-resting muscle tone/ motor skills
Anger/anxiety issues

Some of these I headed off at the pass by getting some professional assessments done through http://www.courage.org/. They have a wonderful Driver Assessment and Training program available. They did an initial test of his motor speeds, attention level, and memory skills. He PASSED these with no problem. This summer I signed him up for the Drivers Ed class....through a local company. He took the classroom part...and finished just as school started. Since then....I've been trying to fit in the trip to the DMV to get the written test done so he can get his Provisional license (Learners).

Guess what....HE PASSED it yesterday.

I was a wreck. He seemed quiet before the test...but not as nervous as I. Crazy how we get, isn't it? I left him in the room and waited in the hallway (huge glass windows so I could see when he finished). Thoughts racing through my mind went from...I wonder how many you can get wrong and still pass... to how am I going to convince him to TRY again when he fails? All my anxious thoughts came to a head as I saw him approach the testing desk with the completed paper in hand. I swear I heard SWEAT coming out my pores. Mr R was pale...and watched the CRABBY test administrator start circling in red wrong answers. I felt woozy...Mr R's eyes were beginning to close....as if to brace himself for the WORD.

So the tester began shuffling papers...looking at his proof of identity, getting out a three carbon slip....blah blah blah. I broke!

Me: 'Excuse me?????? DID HE PASS *almost shouted*?'
Tester: *looks over the top of his glasses and shoves the test towards us* "yea."

Don't know whether I wanted to scream, faint or strangle the bugger for his attitude. I just looked at Rob (who now had SOME color coming back) and nudged him with my arm. *whispered to him...AWESOME!*

Course all this...then the guy tells us we have to go to another building clear across town to get the rest of the process done (pay and picture). What a system! Mr R and I zip across town just as schools are letting out. We get there and fill out more paperwork. The lady there was sweet and polite. He stood for the mugshot...he looked like he wanted to eat someone....we took another picture...he grinned. Now we wait....picture permit comes in the mail (when?). *shrugs* But we have a piece of paper says he's an official LEARNER!

All in all....I have worries...I have fears. But without a Drivers permit here where we live his job options will be minimal. I think he can do it....only time will tell.

Mr R is very proud....so am I!!!!!

Off to the next step...call the drivers ed company and get him signed up for some ROAD time. YIKES! *should I start getting anxious....again?*

~DES~

Friday, October 19, 2007

The Evil OCD monster moved in...


We've always had a bit of it going on here...but as my youngest moved into Puberty this summer....it has reared it's ugly head tenfold. I personally distinguish the OCD behaviors vs the 'quirks' of his Autism by the thought that these are even more difficult to shake off (or redirect). Take the above picture...for some reason...these had to be lined up by color, balls matching and in order of the color on the pole (wicket?) Now, how functional this made choosing your color...but do MOST ppl need this? No...and it became a 'sore spot' when it came to the activity itself. His 'peers' like to play the game 'off the record'....NOT him...by the book only.
Since September we've started some meds with him to help with the OCD, anxiety and some of the ADD problems. This past year is the first time he's ever been on meds......I just felt it was time. Parts of his life were out of control...ie....staying up till after 2am 'thinking thoughts'. Mr M admitted to his Dr that 'there isn't ONE minute my mind is quiet'. How sad....how maddening that must be for someone.
Mr R has started a job. Bagging groceries at a local market. Well....I thought this was going ok......but just recently learned there are problems. He's now on a 2 week 'trial' to see if he can pick up the pace...and keep his job. I had RISE (a company helping disabled individuals in the job field) go with him to discuss this with his boss (this is how I found out there is a problem). Mr R doesn't discuss it...he tells me everything is just 'fine'. Today he admitted that his OCD is causing issues. The way they want them to bag....and the way things come down the belt are 2 different stories. He keeps going over in his mind the 'training video' they watch about the PERFECT BAG.....he gets stuck and starts unpacking and repacking the bags (much to the delay and dismay of the customers). *sighs* He's got 2 weeks to improve his technique.
Still haven't gotten to the DMV to get his permit. Time is flying by with no slow downs. Am hoping next week to get him in there so he can take some over the road lessons with the company that provided the course.
Well...I'm done with Physical therapy....I've resigned my position at the Nursing home. I'm officially unemployed. *nother big sigh* I have to find a job that doesn't require such repetitive lifting...and within the hours I can manage (with the boys needs involved). Right now, that would be like 8:30am to about 2:30pm. No luck so far....called 3 different places that had ads.....all wanted evening hours. NO can do!
I've also 'given in' and went for PCA services for Mr M....he needs alot of cares (due to severe sensory issues) and my back is just not up for it by evening most days. We'll see how it goes....I hate having staff in my home. I've been doing this crap for over 19 years now (my eldest had staff at age 3).
On a positive note...Mr R is doing very well with his classes this year. Beings he's a Senior....I'm real proud of his keeping up with his studies. Mr M is struggling a bit....but much better than last year (he's half reg ed, half spec ed this year). Math seems to be his...tough subject this year. Its a matter of pace...not the math itself. But I'm hopeful!
Autumn has arrived....quite soggy too! The mentioned on the weather that we broke a Century old record for August, Sept, Oct rainfall. The record was back in 1900...and we surpassed it last night. Oh well...if the pond fills up...we'll try ice skating this year!
Again...I'm still catching up with all my webstuff...and friends. Hope to get to everyone's blogs soon!
DES

Friday, August 10, 2007

Ok...shame shame!

**photo is of Mr M learning to skip rocks in our pond just before leaving in June for vacation...the pond is almost gone due to the severe drought here***


I looked on the last post made here and said, "OH tsk tsk!" Summer has a way of getting lost....and so does my brain. I've had lots to do this summer....and like others am feeling summer has slipped away.





Things we DID do...





Took the Princes in a car (rental) and drove back East (home!) to see Grandma! (been over 7 years since we left the east) They were amazing on this lil 'jaunt'! With all the changes, new faces and diversity....they held up famously. I was concerned for a bit over Mr M's eating (which changed drastically)...but he began eating again regularly when we arrived home in July. HOME.....has a whole new meaning when you are away from it, doesn't it?

Mr R has started Drivers ED....*gulp*





Since that time...we've had some 'guests' staying at our homestead. This is suppose to be temporary until they get back on their feet.....which I suppose has no timeline? *sighs* It's difficult....I miss my privacy even though they are not 'staying' in the house but on the property. Kids have been tested with a visit from our guests 'children'.....social skills were out the window! Those extra kiddos just left a week ago *TG* Mr M and Mr R are now enjoying some peace.





Health issues....Not been feeling well lately due to back problems that started just after I got home from vacation. To me, this makes NO sense. To drive over 3200 miles, sleep on different mattresses and not have back issues until you return? GO FIGURE! Its nagging, painful but most annoying (cause I can't do what I NEED to do). Going for an MRI today....open one (cause I'm a big chicken!). LOL!





Hoping to be able to sit for more than 10 minutes without pain soon.......then I can spend more time updating (and wasting time on the internet!) :P





ttfn,





DES

Friday, May 4, 2007

Taking time out...Mom style


Taking a bit of time this weekend to catch a few deep breaths. Both of the boys are away for the weekend at Respite. You know, I never used respite services until about 2 years ago.....and I've found such a better balance since we've started. Part of it was...I didn't think 'anyone' could take care of my boys the way I do (super mom theory). You throw in there 2 guys who adore their 'home' space...and you know it won't be easy at first. Mr M was more accepting than Mr R at first.....just the opposite of what I thought it was going to be. I interviewed many many places before deciding on seperate homes. Mr R's provider is a lady who does daycare during the week.......but she has a similar personality to mine (kinda goofy and light hearted). She also has 2 teens of her own....which made me feel it was a good fit for Mr R (17). Mr M is staying with another lady who has a few younger kids of her own AND drives a Special Ed Bus for a local district. Another fantastic light hearted lady. These ppl don't find what my kids do 'shocking'...and they are always telling me how much they enjoy my guys coming to visit. Both of the boys will come refreshed and ready to get back to basics on Sunday. Am hoping my energy will renew....and my head will be clear of clutter (iep's, meetings, dr appts, work...and future stuff).
So as I sit here in blissful silence.....I think this weekend will do me some good. Not feeling all that strong lately. Energy levels are down and I'm running that short order on 'patience' with ppl (other than my own, of course). Not taking any shifts this weekend either...don't think the Nursing home would appreciate my brassy attitude! :)
Will spend some time enjoying the splendor of Spring we have now....the picture is of one of our wild plum trees back in the woods. One loan flowered tree amongst the pines and oaks. Somehow it fits my mood today.
~DES~

Friday, April 27, 2007

Water is our Friend!


A recent discussion with a school Psychologist has reminded me that summer is fast approaching...which means time for swimming.
The topic came up at Mr M's (14) IEP meeting. He asked about Mr M's recent announcement to teachers and friends...."I NEVER wash my hands!". Of course he does....it's just not a 'desired' activity. I told him he needs to read Mr M's sensory profile to understand the scale of his sensory difficulties. The man said, 'well...he can't have a sensory issue with water if he can go to "insert friends name" pool and swim!'
I found year after year we go through a 'transition' of sorts every summer. His respite provider has a pool and so do some of his special friends. Every year Mr M is difficult about the water issues. It's not as much about getting in any more....but more about getting out! He goes into sensory overload when his skin feels 'dry or wrinkly' after being in water. Lotion must be readily available and he needs to be wrapped tightly in a blanket or towel until his system adjusts.
Bathing is pretty much the same....he still takes tub baths due to the fact that he thinks the showers 'sting'. As soon as he gets out...I towel dry quickly avoiding his hands at all costs. Handfuls of lotion gently massaged into his hands and he usually heads to his room to wrap up in his micro-suede quilt.
Neither of the boys do well with the hygiene issues....still working on these!
My thoughts come back to the pool and how he loves the pool (after a few sessions in the beginning of summer). I'm assuming this is because its a preferred activity? Even though we have complaints after it...he still enjoys it. Handwashing is done...but is not voluntary. Again...lotion must be ready to follow.
School was wondering if they can work on goals for handwashing....my advice...not without an OT input and careful planning. These kids have alot of issues at school to deal with (social navigation, bullies, food, academics etc). I'm not against this idea, but just cautious on how it is approached.
btw...when he did ceramics in art...he put plastic bags over his hands to mold his 'vase'. It's a real interesting peice! LOL! He said, "I wasn't going to touch that stuff!"
anyone share some insight on how to deal with sensory issues and water?
~DES~

Tuesday, April 24, 2007

Glad we're into April!

Just thought I'd post a quicky of Mr R (age 17)...this is my middle son but the oldest still at home. This was taken about a month and a half ago? Blizzard on March 1st. He and Mr M had *according to Mr M* the GREATEST SNOW FIGHT IN HISTORY! On this photo, Mr R was 'explaining' the rules of snow engagement....Mr M's response...a snowball to the face. LOL! ahhh...brothers!

Off to appts today....thanks for the welcome to Blogger!

~DES~



ps...my guys in size are more like Laurel and Hardy. One weighs in at 230 and the other...90lbs. One loves food...other has food issues. Go figure!

Monday, April 23, 2007

'Fight or Flight' response

Mr R (age 17) is a junior in high school. We are at the point of working in conjunction with several Work Service programs as part of his Transitional Services. Overall, Mr R is doing fairly well in school in the last 2 years....before that...many, many issues. The one we can't seem to 'punch through'....his Fight or Flight response to stressors.

His dx includes Aspergers, Tourette Syndrome and Severe Anxiety. His typical response to anxiety or pressure now days....total disrespect and foul language. On the positive side....its rare he bolts! Many, many days I spent chasing this kiddo....glad I had some track and field background to help with this. It's been about 5 months since he last took off on me.......and that was thankfully out back in the fields. Living on a 40 acre farm has its advantages...lots of room to get rid of stress.

Recently at school when he becomes 'overloaded' or stressed...he mouths off at teachers and his para. Horribly. Cussing is something that is rare in our house....I cannot say it never happens...but we DO have rules! In our home quiet and calm is the norm....for Mr M (younger bro) seems to need this atmosphere. Mr R has anger issues. His anger response is off the wall comments, cussing, threatening remarks....and sometimes throwing things. At school...his recent behaviors are more verbal...and we have not found a way for him to come up with other solutions to deal with his stress. My concern is....we are about to enter the workforce phase....how is this going to fly with ANY employer. Yes, he will have a job coach and any job he gets will most likely be through disability employment services. He cannot take redirection...he gets extremely angry when asked to do 'more' or anything that he feels is done.

Part of his 'coping' skill at the moment is not only verbally lashing out....but also to put his head down and fall asleep. We cannot 'process' anything for at least 2 days to let things die down......or it will immediately explode...again.

Mr R also has a fairly significant 'delay' in his response time....meaning he takes a few extra seconds to respond be it verbally or physically. At school, we've told them over and over again to give him that 'time lapse'....and NOT to push. Not being there at school I cannot say if this is part of what is going wrong recently....or if its just a overall 'school work' thing where he is feeling that the work is stressing him. He DOES say that his para and the teacher (sp.ed coordinator) PUSH. But I too have 'waited'....and some of it seems that he's defying a direction even here at home.

He has consequences to face today for another incident on Friday at school. Am hoping he does well with this (detention). Last time he admitted he was wrong, apologized and took noon detention. Not feeling confident today....I'm not sure why.

I guess I'm trying to figure out if there are direct methods of teaching other coping skills to deal with redirection, stress....even critical opinions. We've given 'tools' for him to use....but in the heat of the moment...he still is not able to grasp the concept.

In contrast to Mr R's response.....Mr M (14 HFA) cries....and often curls up in a ball. Just recently....he has begun to throw things and get mouthy. Ahhh...in a way....isn't some of this typical teen garbage??? LOL! *thrilled with that thought*

Long week coming...I've got my boxing gloves on too!

~DES~

Sunday, April 22, 2007

An apple a day...

Most people would not think a child eating an apple was worth posting about....I'm not one of them! Fighting eating issues for over 12 years makes you a little 'food freaky' . This all goes back to Mr M's first signs of Autism. Around the age of 15 months.....he quit eating all the foods accept one...Gerber 3rd foods Turkey and Bacon. He stopped drinking milk...and mostly wanted apple juice (still a favorite).

I suppose any parent would celebrate the idea that a young boy at 14 yrs would CHOOSE to eat an apple....but this is more significant than that!~

Mr M has eaten apples before (last 3 years or so) but recently I was informed *by him* that he LIKES eating apples....with the peel on! For about 3 years, I've cleaned, peeled and quartered apples so that he could eat them at home. This wasn't something he could take to school due to the fact that they would turn 'dark and mushy' by the time lunch hour would come (another sensory demon....visual).

Mr M announced proudly that he traded a recent food add....Chocolate Fudge Striped cookies for his friends apple. I was shocked....and amused. His story was adorable in its telling (if you know Mr M)....the fact that a friend asked to trade her apple. Mr M said yes....Mr M did NOT tell her ALL his cookies....and the poor girl got ONE cookie for her apple! LOL! I did speak to him about the 'fairness' rules of trading....he did admit he 'missed that one'.

I suggested we go to the market and choose some apples to put in his lunch. He looked distressed. I wondered if I made a mistake in his 'liking' them....until he explained the thrill of trading! *duh me* But....I had further discussions and he is willing to take BOTH cookies and an apple......and merely share his cookies with his friend.

I never considered lunch time such a social scene for him.......but I am seeing now that there is much more to his interactions with his 'friends'. btw....all the kids he sits with are special needs. They have known each other for years from different summer programs.

Mr M asked the other afternoon for an apple from the basket to take outside while he plays. He said, "I would like an apple as my supplies" <>

Happily, I report....I think we've found a nice healthy new food choice to add to his list (which is about 5 foods at this point).

Come celebrate an apple a day with us!

~DES~

Sunday, March 11, 2007

Poem: I am the Disabled Child

I am the Disabled Child

I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spiritmore deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.
I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strifes and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious life is and aboutnot taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all, I teach you Hope and Faith.

I am the Disabled Child
~Author Unknown~

***I have this poem on my wall in the office....I think it something I need to look at once in a while as a reminder of how blessed I am***

Saturday, March 10, 2007

Explaining the diagnosis...


"My Best Friend Will" by Tara Tuchel, M.S. CCC-SLP and Jamie Lowell (5th grader)
Author is also an Autism Specialist in her district and is doing continuing work in Integrated Play Groups.
A recent discussion came up with a friend about 'when to tell your child about Autism'. This is one tricky subject in my opinion. Having 2 boys on the spectrum I can honestly say it was all in the timing and the approach.
Mr.R (now 17) is diagnosed as having Asperger's Syndrome as well as Anxiety, Tourette's and OCD *some of these are co-morbid...and to me roll into one!* Mr R knew he was 'different' from very early on......probably as early as 1st grade when he couldn't understand why certain tasks were more difficult for him. He also had alot of trouble making/keeping friends. As years passed, we still didn't have a clear dx; so we couldn't in reality explain things to him. It wasn't until almost 6th grade that we finally got the Aspergers diagnosis. Until then....he had alot of 'non-specified' labels which did not give him adequate services both in and out of school.
After receiving the dx...we started with mobile therapists whom with all good intentions began working with him to help him understand his 'quirks'. They started using a workbook of sort...*think it was called 'What Aspergers means to me' or something*. Unfortunately, Mr R's emotional level of understand IS higher than my other son.....he turned ALL the information they gave him into emotional deficeits....aka...HE considered himself defective and faulty. Severe depression set in and eventually he became very angry...even tried harming himself. It was a frightening period for all of us......and I cried alot thinking how this child could possibly get through this. But he did! I can't say he's fully accepted but he's come a long way and finally feels comfortable with himself (now a Junior in High School).
Maturity, caring and understanding and 3 years later........he now advocates for himself and accepts fully who he is! He even made a presentation on Asperger's for his Health Class. He felt the need for ppl to understand him and his 'ways' and tries to debunk a lot of rumors that had started in school. Many kids (teens) came up to him and wished him well....and said they understood him a bit better. No...it really hasn't changed his social life in my opinion. I DO feel that he's feeling more confident in himself and allowing himself to accept others opinions (biggy for him!)
Mr M (now 14) was diagnosed at age 3 with Severe Autism and Mental Retardation . The diagnosis was done at Kennedy Krieger Institute in Maryland. I was devastated at the news.....and just as in Grief recovery....it took a while for me to get through the stages of grief. But time was essential and we took the diagnosis and applied for all the in-home services, OT, Speech and school services we could get. We had many many hours of *modified to suit HIS needs* ABA and therapists working with him. Today......he is considered Average IQ and High Functioning Autism. Yea...someone who knew him then would NEVER recognize him now.
For years, Mr M would tell me...."Mom....I'm special you know!" My reply, "Yes...you sure are!" *my heart would melt* He continued, "no...you don't understand....I'm REALLY special!" In his own 'way', Mr M knew he was different. This in itself scared me...and fearful thoughts of Mr R's acknowledgements and depression came flooding back. But learning as I have...Mr M and Mr R are TOTAL opposites *in every way*. I put my trust in that fact and talked to his Counselor about explaining Autism to him.
The book, "My Best Friend Will" was what we started with last summer. I would recommend this book if the child's reading level is lower or if they need visual supports in helping them understand the text. The one thing we did with the book was have him read it then discuss it page by page *for comprehension*. Mr M has a reading level around Gr 4...due to comprehension problems when the text gets too lengthy. This book was perfect for him. The Author and the 'friend' explain through out the book how Will is different but also explain how Will is just like any other friend your child may have. Mr M and his counselor read the book together.....and it was like a light bulb going off on Mr M's face...he knew! He said very calmly but with a big smile, "I have Autism, don't I?" He related to Will with food issues, need for sameness and his friendship issues. Mr M was so anxious to tell me that he JUST KNEW he was special...and now he had a 'name' for why he was so special. Mr M usually understands things better when he has something he can connect the 'ideal' with.
Mr M has used the word Autism at school. They are not really 'happy' about his announcements......but I think its more his 'delivery' than the issue of telling ppl he has Autism. Mr M is completely happy with himself and his diagnosis. He LIKES being 'special' and refuses to let his teachers tell him to 'act normal'. He corrects them by saying, "well...you know I am special" OR "I don't think that way....my brain is special".
Teachers have talked to me about them trying to convince him that he needs to act 'normal' around other children if he wants to be accepted. They upset him more by trying to make HIM fit in...then just accepting themselves 'who HE is'. What a blessing to have a child who IS different....and who feels GREAT about themselves! WHY...would you want otherwise, IMHO?
Explaining the diagnosis on Autism to me is an individual issue. When, how, how much is all dependent on the child. Just as in choice of therapies, methodology and various treatments.....NO CHILD should get a cookie cutter approach.
Know your child, know their capabilities for understanding, know their ability to ask questions.......know yourself and your own confidence to deal with the emotional fallout that may or MAY NOT come from telling them.
This will be an on-going task for us as parents. As they progress and move forward.......so will the task of being there to support the child in his lifetime achievements. To me...this is not much different that "NORMAL" parents have...just 'special'. :)
DES

Geometry 101....aka Food Issues!

I thought I'd copy/paste my post on this subject from my other blog. I'm finding more and more that Mr M's food issues are not only taste and texture but very visual.

*from other blog* Was entitled: "Beating Invisible Meat"

As I've described before, Mr M's eating issues are probably the one thing we still struggle with advancements in (as far as his Autism). The rest are fairly 'functional'.
A bit of background:
Mr M eats about 3 foods a month...3 different kinds. He rarely strays from this....unless he's ill....then we usually 'switch back' to an old favorite and drop one of the "foods of the month".
I've struggled with Drs, Psychologists even Nutritionists on this topic and how it relates to his Autism. There are many co-morbid issues involved....OCD type behaviors, oral motor issues, sensory defensiveness and of course; Autistic Tendencies. (think Rainman with his fish sticks and eating with toothpicks!)
Anyway....about 2 years ago I got him to start eating bread. Just plain sliced white bread (then we threw in the 'good stuff' made with added Calcium due to low calcium levels). So, twice a week....he took a slice of bread to eat for 'lunch'....as well as his usual cracker thing (what ever he was eating that month). Then we moved to asking him to eat 2 slices....which ended up very 'close' to normal (the ideal sandwich). Kids asked him, "what kinda sandwich is THAT?" His reply....."Invisible meat!" *gotta love his comebacks*
I figured it was time for some REAL meat and introduced 'Carl Budding' lunchmeat over that summer. Ham only. One for its texture that resembled the Arby's Roast beef (which he DID eat at the time) and the fact that it was fairly consistant in its packaging. *** we've had issues with product packaging too****
So last year (7th grade) he then took a REAL half a sandwich to school twice a week. This took all summer to get him to that level. He bulked, but agreed. It was a rough start....due to my 'stupid' idea of cutting the half sandwich into half again. Remember those little triangle things Mom's did? Well...this was WRONG! That made it '2' sandwiches...not one half! *yea, you wonder why I have math issues????*
Now (8th grade) we are up to a half sandwich EVERY day for lunch. Always Carl Budding ham....always on thin white bread, crusts cut off.....and lunch meat trimmed exactly to fit the triangle bread.
Wonder what this is all about....don't you?
Point is...every day I make this 'artful' sandwich at 5:30 am. Mr R *the older brother* walks by today and says......"Kinda Monkish aren't ya mom?????" *gasp*
My only reply to the sarcasm *must be catching* that Mr R flung at me......
"Least we beat the invisible meat"
which of course.....got peels of laughter from this street smart teen.
Artfully yours,

~DES~

Thursday, February 22, 2007

Bargin Barcode

When scanned....I would scan as "Mom". It's the 'label' I wear proudly but often find myself wanting to shout out loud, "I'm more than just MOM!" It's not about motherhood or its role...its about the Label we place upon ourselves and maybe even have been given by someone else. Mr M often introduces me as , "she's Mom but her name is J" Right or wrong in their descriptions, we often in passing give out our own 'label' as if it defines who we are. Imagine how our children feel with such 'labels' and the imagery the label provoke.

Let me clear this....I am all for diagnosis including what people often call labels. Why? In today's medical, social, and scholastic communities, its the only way the children manage to get the appropriate services for conditions that require intervention. Without it, insurance companies do not pay for treatments and medications...kids do not 'qualify' for extended services such as camps, organizational rec and in-home services. Schools base their 'education plans' on the diagnostic coding in order to receive Federal money to offset the cost of their special education. That being said....I have a big issue with the attachment of sequential labels in order to further 'describe' conditions/behaviors. Sometimes it seems the ideal of comorbitity or 'symptoms that encompass' has gone out of style.

Reason I'm blogging about this? I just came across some very old files on my eldest son. I was amazed in the 17 years how many additional 'labels' he received and when I thought about it....how most of those are simply a manifestation of his behaviors. Being familiar with many of these terms...I thought..."that one was a given considering the original dx". I broke the thought into a 'mom' perspective and comparatively thought of a recipe *lol* Think of your favorite casserole: many ingredients mixed together to form ONE DISH. Each ingredient is not considered a 'dish' in itself. Right?

Here are the 'labels' that my family has dealt with.....with no names involved:

Minimal Brain Dysfunction (early term for ADHD)
ADHD
ADD
OCD
ODD
Tourette's Syndrome
Anxiety Disorder
Tic Disorder
Autism
PDD-NOS
Auditory Sensory Disorder
Metabolic Disorder
Panic Disorder
Sensory Integration Dysfunction
Bipolar
Parent Child relationship dysfunction *I think someone made this one UP!*
Non-verbal Communication Disorder
Mental Retardation
Asperger's Syndrome
PTSD
Depression
Situational Depression
Mental Health Issues
Co-Dependency

I'm sure there are a few more stuck in various reports (which currently are piling up in a file cabinet). My point is......these diagnosis (as similar as some of them are) can be often times be a manifestation of behavioral symptoms vs actual 'bottom line' diagnosis for treatment purposes. Then you have the Dr's/Psychologists that request previous records and copy/paste dx's from another report as part of the 'history'. My eldest....ended up with over 8 of these labels. It came to define 'who he was' and not what he was as a person. This is the biggest injustice to children when trying to work your way through the system to try and get appropriate services. Just run them over the scanner.....*bleep bleep* and the diagnostic picture is printed out on a ticker tape.

Thanks to research, sifting through thousands of articles/opinions and medical research....I've come to one strange conclusion. The labels are needed for services....the rest is just ink. As a parent.....DISAGREE if you feel that something is 'not appropriate' and file a written statement saying you disagree with their assessments. It is your right as a patient, consumer and yes... a "MOM".

Shame our labels can't read like this....

Mom
*and so much more*

Kids
*uniquely rounded*

*bleep bleep* Scan that!

~DES~

Tuesday, February 20, 2007

Beginnings....

Not sure why I've started this blog. I have another blog over on Yahoo 360....which covers the 'Everyday fluff' that goes on around here. Feeling the need to expand on the everyday challenges of raising the dear boys I have. There will probably be a lot of 'history' involved and recall of information that I have tucked into my head under the 'yea...that didn't work' categories. I'm not one for 'conformity' nor do I think the treatment of any condition is cookie-cutter. I've ruffled a few feathers with this theory.......but this is what has worked for me and my family. What seems 'normal' to me isn't always what others understand. That doesn't bother me as much as having to 'explain' things to people that should already have an inkling on Autism issues.

Anyway...just a few thoughts today.

BTW...I'm noticing I'm 'inspecting' Mr M's bread for defects everyday. Wondering if others have such FOODIE issues at 5am in the morning! *g*