Monday, July 29, 2013

I don wan ter

And I don't.
I don't want to make the boy take a shower and wash his hair (my number one choice is to shave him bald and leave it at that)

Why do I have to be the bad guy, the grown up, the person who is constantly reminding him to do whatever it is?
Oh, that's right, I am the grown up.
Momentary insanity, excuse me. I have spent my evening being told I am an old fart. (major eyebrow raise) and that the boy (who spends his afternoon watching cartoons) is the ultimate in cool (big eye roll here).

I really don't like it when the boy tells me I am boring, old, and mean. Seriously? Mean? Boring? Old (OK don't go there)?
I have never ever been called any of that (by people who matter) and you know, I am rather tired of it. I know for a fact that the cuter half and I are NOT boring. We have a great time, and we do all the stuff we want to do. We aren't excessively mean; we just won't take his crap. Or as I used to say, "I have not given birth to you so I don't have to put up with you." I have given birth to the boy and you know what, I am tired of being a constant drone and reminder that he has to be clean.....he is old enough to clean himself.
I think the "mean" part is pure exhaustion.

I am really tired of being told that I am obsessed about the boy's from now on I am going with the new house rules:
If he has greasy smelly nasty hair, I am not gonna care.
If he smells like a camel, well  grab a can of air freshener and go to town.
If he needs his laundry done, OK, well if I am doing a load I might include his.....with a vinegar rinse.

Unfortunately we don't have a Dobby, and although we could use a house elf, we are out of luck....and the boy who could clean himself, his room and his sheets refuses.

I am out of  ideas, time, patience, and fortitude.

The cuter half wants to shave everything on him from the neck up....The new look around here for the boy might be bald....I am still thinking hair remover but I know that isn't the right way to go....but it is tempting....then he would only have to use it about once a month or so....

If you don't have a kid like this, the hygiene thing is really something you won't understand. This kid doesn't care if reaks to high heaven. What is up with that? Seriously? he doesn't notice, care or think about this stuff? WTF? He is in the shower for an hour and a half most evenings, what is he doing in there? No, wait, don't tell me, I think I know and I don't want to know.
Good grief!

HE has been taught, I taught him, the cuter half has taught him, his grandparents taught him.....he is being lazy....common laments are:
"I forgot"
"I think I did it but I will do it again just in case."
"You are the worst Mom on the planet making me do this again." (Do it right the first time and you won't HAVE to do it again.)

Is there a shower thing that will squirt you with soap and shampoo if you step in the shower? If so we need one....where can we find one that works? I am more than desperate at this point. What are we going to do?

Monday, July 22, 2013

Go Holly!

Like Holly, we are struggling too. Our son struggles daily, and the cuter half and I are so far in the struggle pit we don't know how to get out. It is times and things like this that we hear about and all we can do is shrug our shoulders, shake our heads, and then not know what to do or say next.
This time Holly did it for us, and good for her.

I saw a little bit of what Holly said on some entertainment show.....we were sort of watching it and OMG - she said exactly what I have been thinking lately....She has the money power and brains to back up what she said and I appreciated her thoughts on this SO, SO MUCH.

You yourself might not like it, and that is OK, your choice.

Holly, - Love you babe, and good job calling this out.


Holly Robinson Peete's Moving Explanation Of Why J. Cole's 'Jodeci Freestyle' Lyrics Are Offensive- by Parents Section of the Huffington Post 

Mom, actress and autism activist Holly Robinson Peete first came across the lyrics to Drake's song, "Jodeci Freestyle," when her 15-year-old son, R.J., showed them to her. R.J. has autism and asked his mother to explain a specific, highly offensive line performed by rapper J. Cole, she said in a Friday interview on Access Hollywood Live.

The line that has Peete and many, many others up in arms, is: "I'm artistic, you n****s is autistic, retarded." Peete, who appeared on Access Hollywood with blogger Segun Oduolowu, said her son is a fan of both Drake and J. Cole -- and she "had to read [the line] like five times" because she was so devastated that she hoped there would be an explanation apart from the obvious.

Echoing words she wrote in a letter to 50 Cent last year, after he used the the terms "autistic" and "special ed" as insults in tweets, Peete said (coming close to tears):

I just don't know that these artists understand ... the power that they have. Because my son is struggling to fit in. And I mean struggling. So when I see an artist with this kind of following, who is writing not just 'autistic,' but trying to make it the new R-word, it's not going to happen on our watch. Because we struggle every day. And I couldn't even write about it or talk about it for a long time... Does he know that one in 50 school-aged children are suffering with autism? This is not something that is some random little niche issue. This is a big issue.

"What 50 Cent did, to me, is like a Martin Luther King quote compared to this," she said.

Peete called on J. Cole to apologize and remove the lyric from his song. On Sunday, the rapper did issue a long apology on his blog, explaining that while he didn't always think rappers should apologize for lyrics others found offensive, this was a special case ("a tweeted apology wouldn't do," he added on Twitter). "This letter is sincere. This apology IS necessary," he wrote, going on:

In a recent verse on the song "Jodeci Freestyle," I said something highly offensive to people with Autism. Last week, when I first saw a comment from someone outraged about the lyric, I realized right away that what I said was wrong. I was instantly embarrassed that I would be ignorant enough say something so hurtful. What makes the crime worse is that I should have known better.

To the entire Autism community who expressed outrage, I’m moved and inspired by your passion, and I’m amazed at how strong you are as a unit. I have now read stories online from parents about their struggles and triumphs with raising an Autistic child and I admire how incredibly strong you have to be to do so. It’s touching. It also makes what I said even more embarrassing for me. I feel real shame. You have every right to be angry.

Read the full apology here.
Cole did not mention in his post whether he intends to remove the lyrics in question from the song.

Top of Form

Bottom of Form

Blogger Lisa Quinones-Fontanez, whose 7-year-old son has autism, wrote on Babble of the lyrics:

When anyone uses autism or the r-word as an insult it perpetuates the stereotype that individuals with disabilities are worthless and stupid. You discredit every single thing that so many parents have fought for, shut every door that has been opened. You squash a dream. Break a heart.

Pointing out the extent of Drake's social media influence, she added that the problem was particularly urgent in minority communities: "There is still so much stigma within our community about autism and intellectual disabilities. ... Drake and J. Cole’s lyrics do nothing to strengthen our community or our children, they only weaken it. They have disrespected many families and their loved ones."

In a HuffPost blog earlier this year, Peete discussed raising a son with autism, from the day in 2000 when R.J. was diagnosed through the learning experience of puberty. "[T]he main issue for me, the one that keeps me up at night," she wrote, "is will my sweet 6-feet-tall, lanky, milk chocolate 15-year-old be able to self-advocate in life. Who will protect his heart when I am not around? How will his survival skills work for him in real world situations...?"

Clearly, she is devoted to stamping out the prejudices that stand in his way.

Friday, July 19, 2013

A break from the serious

Tonight we break from the serious stuff.
Those that know me well know I am all about taking a break and not thinking about the serious side of stuff - more so than I ought to....That's just me.
Tomorrow will be 12 years- the cuter half married me 12 years ago. It feels like last week. We are happy, healthy and planning ahead.
What more can we ask for?
I tell the cute one that his song is "I feel lucky" The day we got married I was singing and humming it all day long.....

I still feel lucky!
Happy Anniversary Honey!!



Wednesday, July 17, 2013

Never been told "No" in his life

I say "No" alot.

More than a lot. All the time. Even when I might ever consider a "Yes" I still say "No".

Unlike most kids my son hears "No" more than "Yes". The cuter half tells me that he can count how often I have said "Yes" on his pinkie finger.

Today the boy heard "No" he also heard that he wasn't doing something right and that it wasn't acceptable....he has fallen apart. Part of me thinks, "Well, he has to hear it sometime." the other part of me thinks, "Why is it that everyone wins and we all get a trophy." (back to the first and second looser thing right?)

We make the boy do a lot of stuff. We make him try, we make him step out of the Aspie or Special ed  box we try to keep things going and we are very big on him making more of an effort. He has Aspergers, so he has to try harder and do more and reach further.

It sucks to hear and think that but unfortunately that is how it is. For a kid like him that doesn't have a whole bunch of people to depend on we are looking at a pretty limited contact list.

Right now the boy is fighting us. He has 2 more weeks on his summer thing and then he is off until college starts. He is hating this thing. Really bad. He yells at me from the time I pick him up in the car to when I get him home. He won't drive, he had a fender bender and a ticket and now refuses to drive up there.
The yelling at the cuter half and I has to stop.

We are thinking about group homes just to make our lives easier. It could be so simple and the cute one are trying so hard to keep this kid above water and you know what?
We are effing tired of trying. The boy doesn't give a damn why should we?

Oh and I am also tired of phone calls with lists of things we are expected to do and a house that looks like a bomb hit it and the cuter half and I expected to do everything.

Monday, July 15, 2013

IEP Tip #2 Tell the kid and asking univited guests to leave.

Having uninvited guests at your kid's IEP is similar to having a voyeur in your bedroom. They don't need to be there.You are allowed to tell the uninvited or uninvolved or non team person to leave. Don't be polite and don't hesitate. You are the parent; and unless one of the team members wants to take on your parental role......well you are allowed to have only your regulars there.

Number 2:  Tell the kid.

 Most of the time the younger kids will not wish to attend an IEP, but there will be a time that they do want to be there...they need to know about the meeting at least. At the age of fourteen, they are expected to attend any and all IEP meetings; so, as parents, just be mentally ready for their participation. This is not an easy thing to participate in; the intimidation factor alone of being in a room with parents and teachers can scare a kid half to death.
In his younger years, our son finally asked to attend a meeting because he told us that he had something important to say. Initially we did not know what he was going to say and it was as much a surprise to us as the staff that was at the meeting. Initially, I thought he had come for the free doughnuts. I was mistaken.

While at the meeting, he admitted that he was not able to handle another student and needed assistance with coping with this kid. Although, this was not a scheduled part of the meeting, a bully has targeted the boy for several years now and the boy finally decided that he wanted to come to a meeting to let them know that he has had enough and it must end NOW. Up until this point, the school had put it all on the boy to handle the problems with this other student, and that if the boy could not deal with it he was in trouble.  What ended up happening was that the boy was told he would get help if he needed it and he had to work at not being around this kid but at least it was not all stuck on him anymore. This kind of responsibility is not appropriate for an Aspie kid, it is very difficult in a normal situation, but for an Aspie it is 10 xs as difficult. Socially, this is so complex that our kids are not able to handle such a large responsibility. Many times, if a serious problem comes from the kid it will work better because that means that the kids are vested in what is happening and want to be a part of the resolution.       

This is the hard part; kids get embarrassed. If IEP meetings get to be too much emotionally, there is a waiver you can have the child sign off so they do not have to attend. This waiver is only required after the child turns fourteen, prior to that their attendance is not recommended or required.

FYI- for the first year of High School the kid should be at the transition meeting if possible. This does make the kid feel involved and invested in the process and that is a huge part on the road to improvement for the kid in question. Although, try to find out if the elementary school is going to pop up with unpleasant surprises. If they do your child will be very uncomfortable in the meeting situation. At our first transition meeting, we were lied to and told she had never been to a transition meeting before. This teacher, who was not on the boy's team, making comments and informing us that the boy was essentially a moron. She got her digs in about how he was not able to handle himself and that he was removed from her classroom. This was the teacher who taught, "cat", "at" and "tv" for spelling words. We didn't have a lot of respect for her comments.

After this school transition meeting, the cuter half and I got out of the meeting and went directly to the district office, filed a complaint against the uninvited teacher and proceeded to cry as if our hearts were breaking. Our refusal to leave the district office until we met with the Assistant Superintendent was a big deal. We stood in the hallway and got in everyone's way until we were heard. Our complaints that day, to the district assistant superintendent helped a little. AT a later meeting we were able to get an administrator to admit in the next meeting that an "A" from his school wasn't really an "A" and that the kids attending his school (special ed and gen) were generally not ready to attend other schools.

After that experience, the boy was so upset by the loud voices and hurt feelings, he had refused to come to another IEP meeting that year; but was aware when they were happening. He just could not stand or handle the raised voices or hurt feelings of his parents or favorite staff members. Having a teacher there who disliked the boy and us was devastating. On that note, be careful whom you allow to stay for your meetings. You are allowed to ask educators to leave, especially if they are not a part of your son's team and placed there to be the "bad guy".

Now that we have had that kind of experience, we will be certain to request people leaving our son's upcoming meetings. We may have had negative experiences with them or just are not capable of working with them, either way we will be asking them to leave the meeting. This is not a time to stand on your "Miss Manner's Guide" and be polite. It is a time to admit you are uncomfortable with a certain person in the room. There is no embarrassment if you are not comfortable having someone there who is not sympathetic to the goals for your son. Tell them, "Nice to see you, thanks for stopping in, Goodbye."

copyrighted by Aspie Extremes -The Book
Please note any comments and responses on this particular post become property of the author of Aspie Extremes- The Book.

Sunday, July 7, 2013

IEP Top Meeting thoughts: #1 Planning ahead

This segment is from the author's book: Aspie Extremes- the Book. Depending upon the readership will depend upon this list continuing.
IF there is something you would like me to include in subsequent posts regarding IEPs  please let me know.

Number 1: Try to plan ahead, read the draft IEP and look prepared.

We like to bring relevant materials to discuss.

So ya know, relevant materials can mean prior IEP's, a usable copy of the State Laws (our copy is tabbed, lettered and numbered) and any doctor's recommendations (in triplicate). Make certain your plans make sense and are tangible/possible or reasonable. Feasibility is the key especially if you are asking for something more or additional to what is currently in use on the IEP.

This is important and relevant not only in this venue but also with other points as well. You may need doctor’s notes for additional snacks or activities.  In our early IEP days, I would bring in two or more binders and all the data that I thought we needed for the meeting. This could include doctor's notes, and other medical forms for the upcoming school year. I liked having it all done at once. In addition, it also meant doing what I called "Signing your life away." This means that the school, teachers and pretty much anyone there could have complete and total access to our son's docs and free access to our home at any and all times. We gave everyone access to "tip toe through the tulips of our personal life and home" while they were and are working with our son. This feeling of no privacy really made the cuter half and I uncomfortable but we felt it necessary to get full understanding of what was going on with the boy.

For example, recently, a local school district came up with a comprehensive “Health and Safety” plan that did not take into account that some of the students that are at school from 7:00-6:15 PM (before and after school activity times) and those students might get hungry. This new plan allowed students to ONLY eat in the cafeteria. Therefore, if a student were at an after school activity and there was no place to go to eat, said student were to stay hungry until they got home.
How stupid is that?
Essentially, this new policy was for those students with nut allergies and no other student needs were considered. I realize that nut allergies are hazardous and that serious consequences can result, but these standards have to be met and used with some sort of practicality. Making a broadcast promise like that to a family with a kid with an allergy like that is not practical.
At this juncture, we were required to get the doctor’s notes so that our son could have a snack in his case managers office after school when he staid for practice or other activities. The school was accommodating to our son's needs but I still had to provide the doctor's notes indicating that not having food would have been an immense hardship and would have effected his education adversely Otherwise, we would have been stuck with a starving kid at school; and a bear in child skin when he got home.

We were stuck with the bear in child skin anyway as he was only allowed one "meal" in the cafeteria. Did you know that 4 cheese sticks equates a meal??? I thought that was a snack or appetizer. Nope, in some school districts, that is a meal and that is all your student can buy during a lunch period. Good grief no wonder the kid was a crab when he got home. His blood sugar was at almost "0". We would walk him to his room, throw food on the plate and RUN..... then wait forty five minutes until he had eaten before saying, "Hello".

Keep these (unusual) school "plans" or some other kind of thing in mind when developing a plan at home for an upcoming IEP meeting. What your child needs and what the requirements or rules or new "Health and Safety Plans" are may be two separate things. Make sure you read any of the "plans" from the schools prior to the IEP's otherwise your student may be stuck with something they are not completely happy with. It also means that you may end up running around like a chicken with your head cut off trying to access doctor's notes and other materials that you are going to have to have to complete the IEP prior to the beginning of the school year.

I normally think, "Be careful what you pray for because you may get it and then what will you do?" BE very careful what you ask for at your IEP, because once you got it, baby; it may not be what you thought it was.
For example, having a teachers aide in a classroom may not be what you thought it was. At one school, there were TONS of aides throughout the building, many were in classes together so not only would the teacher have one aide per kid, there could be three to four aides overall in a team taught classroom. At one point, there could be more aides than students in the class: insanity!
copyrighted by Aspie Extremes -The Book
Please note any comments and responses on this particular post become property of the author of Aspie Extremes- The Book.