September Thoughts

Well...we're back to school for Mr M. He's a junior this year and hoping this year goes smoothly is always on our minds come September. He's got a few 'major' classes this year and we have to wait and see how it goes with his reading comprehension issues. He's already come home stressed about the 'dissection' part of biology (which doesn't actually come till mid year). I told him we'll wait and deal with that when the time comes. Email arrived the other morning from his sp ed case manager...' needs to understand he MIGHT have homework to bring home' type message. Mr M has always done his homework in Study skills due to the fact he mentally shuts down at 3pm. For the last 3 years I've told the school that should he ever get a pile of homework it would be difficult for him to 'accept' the idea of taking it home. DUH. Anything outside his 'norm' is going to cause problems. All I can do is tell him and hope he brings it home. Mr M has a unique way of saying things...always has....but what the school doesn't get is he's not trying to be 'smart' or 'sassy'...he's just being truthful and blunt. His reply to them telling him that he may have homework to bring home is..."I don't bring homework home". Just a fact (in Mr M's mind)....not defiant...just fact. Oh well...don't think they will ever 'get' his way of communicating.

Mr R is still working...and doing well. Still working on the 'driving' and hoping to take his driving test soon. Things we didn't count on (but should have) is his executive function skills issue playing into driving. The whole...planning and thinking part of driving is causing a bit of concern. Naturally as we come to a stop sign we THINK...gee....coming up on the stop sign....should apply the brake....ok....start braking...etc etc. This is a bit...sticky with him. He kinda comes up on it fast and then tries to brake. Geeeez...somedays I need a stiff one just to be in the car with him (JOKE!) LOL! Oh well...we'll keep practicing and prompting.

Summer flew by...and now the leaves are beginning to turn and the mornings are filled with dew and fog. The pic above is one I took a while back in the early morning. Love the smell of the morning....pretty soon it will be too cold to take those walks. *sighs* Oh well....enjoy while we can right?

DES and the crew

Choices...our change for the better

One thing I worked on this year was examination of my kids services and how I could better improve the quality, time and management of those services. Over the years I've noticed that PCA (personal care attendants) and respite providers come and go at times. Having kids with Autism has taught me that when staffing says they are 'moving on'....its time to prepare for another HUGE transition. The unfortunate part is...we have no choice in when that transition happens. Sometimes we got less than one days notice...and poof...they were gone. Agencies would scramble to 'find' another staff that would fit and often months went by with no staffing support. Working in the nursing field myself I completely understood burnout and the high turnover. Nonetheless, when it comes to living with the consequences 24/7...it puts a whole new light on the matter.
My son's have been on the CADI waiver since early 2001. Services are based upon the assessments done by the county and decisions are made by the county as to how much, when, and where. Many, many cookie cutter programs out there....I've tasted most of them. Also, to get any sort of 'equipment' for sensory or home based use was an act of God. Even after 'recommendations' from said people my kids got very little. Too many hands in the till, IMHO.

So...this year I seriously considered their needs and where they were in life as far as what services they depend on to get through their day. Looking at the program options available...I stumbled upon the CDCS option. CDCS (Consumer Directed Community Supports service) is a waivered program which allows consumer choices to how those supports are delivered and by whom. In Minnesota, they are available to people on Medical Assistance waivered programs and Alternative care programs (maybe not in all counties...I'm not sure). But it WAS available for us.

Advantages of CDCS? First starts....you choose and design the services and supports that BEST fits your assessed needs (yes...you still need the assessments done by the county). The consumer (wow..novel idea) decides when you should receive those supports and services and WHO you hire to provide them. This can include spouses and parents. You do the hiring and firing! YOU decide how much to pay them. The county and state still monitor to ensure the health, safety and well being and to ensure that everyone is in compliance with state and federal regulations. Worth mentioning too....you can stop using the CDCS at any time and return to other waivered services.

So in a nut shell...this was a new and better option for my guys. I knew that alot of what my staffing issues were..lack of pay and flexibility in their schedules (beings they had several clients through and agency that they had to service). Before I chose this new road....I DID check with the staff that I wanted to see if they would be willing to make the change with us. The ones that stayed....are invaluable and agreed wholeheartedly.

Downsides..there is alot of paperwork and direct supervision on my part. But hey...at what point having a special needs child do we NOT have paperwork? And don't we WANT to have that ability to supervise what staffing is doing with our kids? Of course! I just penciled in a certain day each week for paperwork and budget review (can be done on a monthly basis). For me, the option of being able to personally train, supervise and change a care plan at ANY point is beyond words. My kids are constantly changing in their needs...from day to day...to transitioning back to school....to sudden lapses in skills (regressions) etc. The flexibility benefits my children and its easier on me then having to make phone calls and try and schedule in several meetings to make a simple change in service plan.

So far...things have gone quite well and we're all adapting to having the FREEDOM that this plan has to offer. My kids staff...just plan HAPPY now to come to work. Go figure! :)

This past summer a lot of cuts were made to PCA hours and monies in general to the county. If anything came of this...I've learned that if you are going to cut me off at the knees....I'm going to have some kind of say in where's its going to get spent. After all....to me its simply the same that I would do for any 'normal' child. We make decisions and choices in our lives....my kids need ME to advocate for what's best for them.

It's all about choice...I'm glad I have that option now.

Another summer's ending...

As another summer comes to an end I have to think at least we had a bit of fun this year. Mr M discovered ATV's (thanks to his eldest brother coming over with his vehicles). My daredevil...speed demon scared at least a year off my life. He's a rule kid...so he did listen to all our rules and even counseled Mr R with a few *hehe*. I know the dangers of these things, but also realize I'd rather them learn how to ride something like this with parental supervision then later without. Luckily we have 40 acres for them to roam around on....including a back 20 of pure field. I did get the hang of it too...although I never realized what a workout the old muscle get. Ouch!

Mr M has spend alot of his time with his staffing this summer. Working on eating breakfast, transitioning and re-learning the concept of adult respect (lost recently due to idea of turning into a full blown teenager). Although Mr M is a 'rule' kid, he found it difficult to deal with the a-typical behavior in senior high without testing some of the mannerisms and language (not profanity specifically...just rude and short answers). He spent time roller blading, swimming, visits to the library etc. A break through with staff was his willingness to dry himself, lotion and dress in the men's bathroom.....ALL by himself! *three cheers* Now to take that and get it to work at home for showering...ahhhhh...would be grand! :)

Mr M will be a junior this year....and with it all that comes with that lovely social scene. All we can do is work with what comes home, and hope he gets through the year without serious incident. School starts up again September 8th.

Until then, he definitely still has his summer 'mode' on!

He-man and the school ring

Well...Mr M finally has his school ring. All year he has looked forward to the time when rings would be ordered. I looked at it as "gee...I hope he brings the paperwork home this time". A year ago he took it upon himself to fill out his yearbook order to the tune of over $75. He got all the 'extras' and informed me the bill would be sent to the house. *how lovely* I went online the next day and downsized his order to a simple version with his name on it...cost $42. Much easier to digest, I think.

The whole school ring in sophomore year is new to me anyway. We used to get them in our Junior year (but alas, I'm showing my age again). :) We met with the 'ring guy' and he selected his style (with Mom's guidance codes on pricing) and then chose his 'extras'. His name (he loves his name), a Peace sign (another flashback) and his graduation year on the other side. He chose the Red garnet due to it being his signature color and felt happy with his choices. He does not like his birthstone (Nov)...so my advice was ignored *again*. Within 8 weeks final payment was due and he had the ring come early morning one day.

Then the evil sensory issue popped. He's never had issues wearing 'rings'...I have a picture of him when he went through his "wear one on every finger" stage. But...these are measured to have some play and tight enough to just go over the knuckle. He came home that day with the ring squished on his index finger instead of his ring finger. He looked as if he was going to raise it in the air and yell, "By the power of Grey Skull...." like He-man would. I explained it might swell...and then have a problem...to no avail. As I thought about the problem I realized it was probably a new sensation...that looseness on the finger. Being a sensory seeker...it was probably tickling him. Thoughts of resizing went through my head. Nope...we'll have to get used to it, somehow!

The next morning he woke up with the index finger swollen and the ring cramped firmly on it. We managed to get it off....but I think it 'clicked' about the issue with wearing it there. He agreed to wear it on his ring finger and give it a week (to get used to it). IT WORKED! *yay*

As you can see by the picture....Mr M is QUITE the bling-boy to start with. He LOVES 'decorating' himself. He always has at least two watches, an autism band and sometimes his wizards necklace. So proudly he wears his school ring...just a bit more FLASH for my guy! :)

just hope he doesn't want piercings!

Drama King lives again

I don't see my post made a week or so ago...but had to at least update this one (been awhile eh?)
Mr M is again in the community theatre play this year. Last year was his first year...I had my doubts, but was pleasantly surprised how well he coped with all the issues.

My only regret was at the end of the year cast party (which I volunteered to help with) I was pulled into a conversation by a 'person' who works with this theatre company...she also works at his school in the drama department. The other mother and I were cleaning up after the cast party and was asked, "Did you guys see that crazy kid...***** (insert my kids name) and all his stupid antics? He was falling all over the place and in the last set I saw his @$$ crack all the way from the tech booth!" *I look at M (the other mother) and didn't say anything* She was looking at me as if to say..."say something!". My biggest fear was that if I announced I was Mr M's Mom that she would, in her supreme foulmouthing...say something to him. What I wanted to say was...

"Lady? *used loosely* Do you have ANY idea of how difficult it was for my son to interact with all these kids, to take and follow directions from the directors....to perform "6" shows in front of live audiences?"

But I held back...and shrugged and walked away. If she's going to DISS off children in that manner I have nothing to say to such ppl. She might want to find out who's who before doing it to another parent though. I cried all the way home (my reaction instead of anger...always). Mr M asked what was up....I told him I was just so happy for him and proud of him. He was fine with that answer.

The only problem last year was the director telling the kids it was ok to 'ad-lib' a bit during the shows. Mr M took this and ran with it. Instead of 'stumbling' once (as he was suppose to do)...he turned it into several by the end of the play. And NO his butt crack was NOT showing...ever. I went to EVER performance. He had on a belt so tight that the beige knickers he was wearing was cutting off his circulation at the waist! He also had issues with getting to OCD over things....wanted the directors time alot to ask questions. Many many questions. Typical for the autistic kids....and I did make the directors aware of his disability towards the middle of the play practices so that they could better understand his need for clarity. They were surprised and delighted to have him in their show.

This year is a new show....and he has a few parts as well as the ones with the other kids (dance and song numbers). So far, he's having some difficulty again with the 'clarity' issues. I've noticed he's not really WITH all the kids when they are practicing but keeps himself isolated pretty much. His 'acting'....very much improved and he's speaking very clearly and with good tone and volume this year. *yippee!* Practices are slow right now but by early May they will pick up to 3-4 times a week plus Saturdays. Mr M is excited to be in the production this year.... and is looking forward to the actual show (versus sitting in practices waiting your turn). Oh yea...him do the Charleston is a real gut buster to watch too!

School is over the end of May here...Sophomore year goodbye...get ready to be a Junior *gulp* Not sure if I'm ready for this one....it puts it closer to the final homestretch!