Assessment ????

Where do I begin ?
I have such mixed emotions about this post -- One of my biggest pet-peeves are people who are judgemental -- I think that it comea with the territory --being a mom of an challenged child.
I am finding myself to be a bit judgemental in this case and it is eating at me. Let me explain.As i have written about this topic before there is so very little for our children once they exit high school. It is as if they have fallen off the radar.

There are several organizations and places who provide programs, work and social activities for the developmentally disabled; however this is a broad term which encompasses a wide array of challenges from downs syndrome to schitzophrenia --from autism to mental retardation and everything in between.

The quandary is this; in programs that are out there, I do not feel these are an appropriate placement for Dakota or most autistic individuals.
I guess this is where the Judgemental attitude slips in--- Look I know my son has significant challenges and definitely a need for adaptation in every phase of his life BUT it seems as if the mind-set of the public or even most of those who create and provide these programs is that every disabled child fits into their project. It is just not true. Our kids for the most part are square pegs and their programs are round holes!

I recognize my son is disabled and I love so many of the individuals who are in these programs but it is NOT where he belongs. Hence the hypocrisy!

Dakota just completed a 4 day work assessment at one of these programs.
4 different people working with him four different days and compiling a report of his ability.It was an interesting project and it will be helpful to have observations from people who are a blank slate when it comes to knowing Dakota. But I just cannot agree that this is the type of place he should be.

The program is trying to encourage myslef as well as Dakota to consider coming back and continuing.I appreciate the interest and enthusiasm. I appreciate what they do BUT I will not place Dakota in a "warehouse" away from the public eye with many people who are so much more severely impaired than he is for the rest of his days JUST BECAUSE others have decided that its OK for their kids.

So I press on -- we will be heading on to another assessment next month that is geared specifically to Autistic individuals.This will probably be a more complex picture of Dakotas abilities and shortcomings. This should allow us to create and mold work and social activities which will suit him better.

For now I struggle with my judgement and demons! And continue to look for the perfect mix of all things to make Dakotas stay on this earth one that will make him happy and content.

What happens now?

If there's one piece of advice I could give someone starting out on this journey is never focus too hard on one task with our kids. Always give each accomplishment resounding accolades but know that as soon as they finish that there another one waiting around the corner.

Autism is not for sissy's---it is something that keeps coming and you have to be resilient; you cannot give up, let you guard down or wither away.First its early intervention and dealing with the diagnosis ,then its school districts, therapies and support, finally as all of that comes to an end you then have to formulate a plan for the rest of their lives. Whew
It wears me out just thinking about it. Well I am there and still at odds of exactly what to do.

The school district seems to be of the opinion that they have done everything they can and they gracefully give most of our kids a "Certificate of Completion" and send them on their way to spend the rest of their lives working in a warehouse, out of the public eye quietly tucked away doing piece work with many others who don't even have the same diagnosis, traits or behaviors. I know my job as a Mom is to also support and teach my son at home but it really chaps my hide when he can barely sign his name legibly, has not been mainstreamed properly to adjust him socially and is usually in a classroom that does its best to teach but has teachers that are constantly taken away from class for IEP's during class hours and training that should be done when it does not interfere with the little bit of teaching that is available to these kids.

Now the question that they pose is "what do you want him to do when he gets out of school?" They call this "transitioning" and it is supposed to start somewhere when the child is about 14 . Mostly the adults set "lofty " goals that are just something to write down to satisfy the IEP and even if you have serious requests or goals most of the time at the end of the year you don't see much in the way of progress. Or the teacher or class has no way of accommodating your request and it falls back on you.

Then when you get to the final year or so they start to pressure you. They are telling you that your child should work and that he needs to experience independence when in fact they dropped the ball on all of that years ago.

Look I am not trying to push it all off on the school district, I accept some of the responsibility but for years I have tried repeatedly to impress on them what needed to be done and it just wasn't. I mean when a typical set of parents send a typical child to school there is a typical expectation that when high school ends and they graduate that their child will be reasonably prepared to at least have a repertoire of abilities to perform in the community-- like getting a job or being able to have a bank account or possibly live on their own.That is NOT happening for most students in Special ed-- Not just Dakota.

So we delve into the next chapter---What comes next?
These children literally fall off the radar once they are out of school -- It is either function well enough for the "typical" community or resolve yourself to the world of the disabled--- There is no happy medium there is no compromise. Its very frustrating. Our kids are so unique they do not fit in either world . what happens is they usually end up going with "challenged " kids and people because there is so little accommodation for them in the "typical"community.

My personal goal is to create a compilation of experiences to mold to Dakotas needs. I really cant say I know what he wants but I know what he responds to and what he succeeds at so these are the guides I will use.

What I am doing is exploring volunteering opportunities form a number of reasons but mostly because it is something that allows Dakota to get out in to the "regular" community. It is very rare that you will be turned down when you volunteer and there is always something your child can do. Additionally I am trying to tap into the local parks and recreation for classes that can be enjoyed by all people like an exercise class or a planned community field trip. And because all he had known since he was 3 is school we are going to add in some potential classes at a local junior college to establish continuity. Top it off with our own trips to the beach. the mountains or to Hollywood and I think we have got a relative plan.

Coming full circle to the beginning of this excerpt I never imagined that when Dakota started school that I would be faced with these types of decisions this far down the road. There are many kids that seem to respond to certain treatments and have managed to blend but there are many more who are just like Dakota who have wonderful qualities and abilities but mainstream America does not know how to accept it or embrace it So its our job to figure it out ---
Figure out "What Happens Next?????"

Web Group Support

It occurred to me that I have never talked about support that can be found online---I would suppose that anyone who is reading this BLOG is well aware of the Internet however I wanted to "steer" anyone who might be seeking support in the direction for help.

When I started this journey I was pretty much skeptical and not interested in being a part of a support group. I felt that I had enough on my plate and I did not need to invest the time to what I perceived as "drivel". There was a support group for everything --and why would I want to waste my time?

My very first night I participated in a support group there was a family that spoke of the "trials" they were going thru with their son---They has to turn off their water at night and lock the refrigerator because their Autistic son would get up in the middle of the night and "try to" pack his fathers lunch and had most everything in the refrigerator strung all over the kitchen and when he was bored with that he would take a glass and fling water all over to watch how the droplets of water reflected thru the kitchen light---After hearing that I was not only thankful for what I was going thru but also realized exactly why I needed to attend this support group.

This group was thru a program that Dakota attended and while they worked with him ; I attended the group. Eventually Dakota had completed the program and that meant I no longer would be able to attend this group.That is when I went locking on the Internet for web groups-- and I have fond several that I participate in.

Rather than list those groups I use; I will say that you can go to any ISP like Yahoo, AOL, Msn, etc. main page and look for web groups under health and usually you will find corresponding items that match.{also you can google or Keyword search}

I am sure there are many out there who don't have the time,interest or energy for a group but I will encourage you to consider "bonding" with someone who has walked in similar shoes-- Many of us are mourning or in denial and when you touch others who are experiencing the same or similar things;it really helps-- it really does

There are also groups that you can physically attend and many find those more satisfying. The only down side is that you have to set aside time to get ready and go to the meeting places ---at least on time it can be at your convenience and on your time schedule.

The End of another Chapter in Dak's Life

January has come and Dakota's High School career is done. He has experienced such great improvement in the past few years and developed some abilities that I was not sure he would ever develop. As this chapter comes to a close, it is a double edged sword. For the one side offers new and hopefully exciting changes and opportunities to move on into the rest of his future while the other side is filled with sadness to say goodbye and overwhelming anxiety to leave what is familiar!

From the time Dakota was 3 he was placed in school. It is really all he has ever known. Its something that he has patterned his life around and now he is struggling with "What comes next?" I have tried to re-enforce the idea that he can always take classes in College because you can never "age out" of college. People of all ages attend and it is also a place where young adults more his age will be, also! I am currently looking into a few options and intend to continue to do everything I can to develop his independence. I have also tried to impress upon him that by leaving school he will now be less restricted to do other things he would like to do--Like go to the beach on a Tuesday or bowling in the middle of the day. He seems accepting of these thoughts yet apprehensive for the change---that's the anxiety!

What he seems to be missing the most is the social aspect of school. Ironic that several years ago I wasn't sure he would ever bond to any person: now I see several people he has developed feelings for. Although the relationships are far from what most call "normal" I as a parent can see marked improvements in the simple idea of what Dakota thinks of as a "friend"! He gets smitten around those whom he is attached too often to the point of shyness and embarrassment. He will carry on small conversaton but still relies on the other person to "carry" the exchange. As far as the phone its "a hello" and then hand the phone to Mom then his conversation is vicariously through me. Although he very rarely speaks on the phone he will never leave my side if I am speaking to "his friend". And many of his attachments have been with other adults on campus like the groundskeepers, security or the cafeteria staff.I think that is because they are more pro-active to engage him.
So leaving school will put a big hole in his social advancement and I must press on with other opportunities to keep him flourishing in that arena.

One of the bigger issues was the actual finality of exiting school, especially mid-year. We had already made arrangements for Dakota to participate in the traditional senior activities; senior breakfast, senior luau, prom and graduation. What I had to do for the "mid-year" exit was create an atmosphere of positive re-enforcer's to make it "OK" for Dakota to leave his class and teacher. Here's what worked for him:
The teacher and I sat down and created an "Certificate of Advancement" declaring him he had successful completed school and it was a step to move into the future and his young adult life. We made it on a special paper that was like a scroll and we had the teacher and instructional assistants sign and date it along with a gold seal. We also had a small party with a beautiful cake that had a graduate sprawled out on a book and the caption read :"Look out World - Here comes Dakota" We also invited all the people who meant something to Dakota like other teachers whose class es he attended ,other instructional aides who had some involvement with him and any other staff that knew Dakota.

Although at the beginning of the day started off with resistance, quite a bit of resistance I was able to work around his insistence to NOT GO to SCHOOL and eventually convince him that it was OK and he would enjoy, remember and hopefully cherish the memories later.

The end result was fun and great pictures that will be placed in his yearbook !
I only hope that my boy knows how proud I am of him and how much he means to me -- I will go to the ends of the earth to make his world right!

WOW another little Glimmer of Hope

Time to boast a bit---- Went to Popeye's the other day thru the drive thru. Ordered some pies that we were informed would take 6 minutes and could we please park in front and they would bring them out when they were done. So we went to the front and parked. About 10 minutes went by and I made the comment WOW I think its been more than 6 minutes and all of a sudden Dakota unsnaps his seat belt opens the car door and says " well I will just go in there and find out what the hold up is!" Talk about cracking me up -- he walks in there and it was all I could do to stop myself from not following him in there but I held myself back and he goes in there says something to the person at the counter{I am watching this thru the glass door} and he steps back put his hands in his pockets; about a minute later out he comes with the bag and a smile on his face. I was so proud of him and he was proud of himself.
Again another little accomplishment that makes both of us feel like a million dollars!

Chewing

I know I have written about Chewing before but this is a topic that resurfaces on a regular basis so I cant help but put another post up on it-

Chewing-- Man O Man Dakota has been a chewer from the time he was small the T-shirts had gnarly bottoms every time you turned around he had a shirt in his mouth -- another thing he was notorious for was to pull or chew the labels on the knack of the shirts too! Since those early days we have graduated to more "appropriate" chewing items An Occupational Therapist suggested some dog toys for numerous reasons including durability and texture but there comes a time when you don't want your child identified with "dog" toys. We even had so surgical tubing put on a long shoe string so as not to loose it and eventually I have started buying bar towels and I keep a special place. When Dakota starts to put something in his mouth I try to direct him to the cupboard where the towels are and just say "why don't you go get a towel to chew on?" Well lets face it walking around with a towel in your mouth isn't exactly appealing and perhaps provokes some people to judge~~~~~So now my latest "thing" is tooth brushes!
Every time I go to the store I always pick up a couple of inexpensive toothbrushes. I try to pick the ones that are "flexible" because he has snapped a few really cheap ones in his mouth from sheer gritting force but for the most part he chews like a mad man and it seems to be a "better fit" as far as appropriate. At least when he goes out in public having a toothbrush in his mouth is like a tooth pick or a straw.
The only problem I have run into is that he will grab his Crest Spin Brush and he will gnarl up the bristles-- those damn things cost about 5 bucks a piece so now I remove the top part of the brush and put it in the drawer--OUT OF SIGHT OUT OF MIND --works like a charm