Thursday, March 29, 2012

Driving with Aspergers- the argument

http://well.blogs.nytimes.com/2012/03/27/the-challenge-of-driving-with-aspergers/

The boy is driving with aspergers. He has to drive to get a job and make friends. Locally it isn't happening for him. Ergo the drivers ed question.
Putting him in drivers ed was the smartest thing we ever did. He learned a lot. Scared the crap out of him too and that was a good thing. Many people questioned out judgment. They thought we were nuts....they told us he would not make it as a driver.
They are wrong.

Most of the time we underestimate what our kids are able to do. We work hard, but the kids are forced to work in an environment that may be unfriendly to them on a million different levels. At school, socially, in different places, even where you don't expect negative things to happen it still does. It makes the cougar Mom jump up and say, "No."

It makes parents like myself become offensive and not care too much about it. The offensive part I mean. I won't allow anyone to pick apart or make fun of my kid. IT is bad enough parents like us do the picking part to each other regularly. The cuter half and I get slammed regularly for any number of things....for believing the boy shouldn't lay about playing video games all day, for not allowing constant computer access and for putting major limits on the wifi.

As far as the driving goes....we are going slower, taking longer, the boy isn't enthusiastic, but he will still drive and get his license......and we are looking for him to try, practice and learn. Most of his driving will be local and from what cuter half tells me he is getting better at it and would do quite well if he practiced every day like we do....but he does practice a lot. Driving is an important skill to have. It is vital for these kids to be able to drive and go to work or go to the movies or out for dinner. They can't live out of our pockets forever.

How much do we know about what our kids are able to do and what they can't? I can only imagine....what it will be like.....



Monday, March 26, 2012

Giving more than

"Never give anyone more than they are emotionally capable of receiving, or they will have no choice but to hate you for it."

http://www.cnn.com/2012/03/21/living/elizabeth-gilbert-avoid-over-giving/index.html?hpt=hp_c2

I wonder how many times we give more than we can receive. Or is it that we receive and don't know what the heck to do with it or do about it and if we blow it we feel bad but we learn nothing from the gifts themselves as they aren't really gifts. They are on exteneded loan....or at least I know one person who appears to think that way.

It amazes me that there are people who think that a parent like me is completely void of sense or reality. They think we are capable of dropping everything and running off and doing whatever they behest and we shouldn't trouble ourselves with the immediate but only do was the tell  us to do in order to keep the peace.

I am not so interested in keeping the peace or giving MORE than someone can handle- at least right now.

The cuter half and Iare loyal , fierce friends. We are willing to help anyone, do anything to help as much as we can but in order to preserve our sanity and people who have taken gross advantage we have toughened up, and learnt to say, "No". The sad thing is there are times Iwould have said, "Yes, OK." but becuase of past issues the auto response kicks in and the answer is "No".

I believe though that some people are disappointed in us.Why? well because we are trying to preserve what is left of our sanity.

What we live with, and how we live is AMAZINGLYstressful. We are under a constant strain. It is hard to keep the house as clean as we would like to....there are things that get missed. There is a kitty that likes to get into the towels and make messes....there is a life that we live with the boy. You know what? This ain't no Taj Mahal but it is a house that has a lot of happiness and love in it.

The boy will graduate soon....yeah we have a year or so but let me tell you, for us, that is SOON. I worry about it. I don't sleep at night.

The boy has a long way to go to prepare for this future stuff and maybe it will be so bright we have to wear shades but for right now, today we have to wonder if he will be able to drive himself where ever he needs to go and how will he exist and what will he do.....

The questions are harder than you will ever have to ask, unless, like us you just don't know...and although like Dr Sueuss the boy is "Brainy and Footsy..." it is still darn scary out there. I was happy to get out of HS, myself, but now, this time, I am scared. I am afraid for my son....

and whether you agree with me or not. That is a damn scary place to be. We have to think more, think harder and do more than most parents. How does one plan ofr it all and be ready for none of it?
Have you ever thought of all that we need to do?

God how lucky for you. YOU don't have to..... as for the rest of us.... we have to get our kids ready....and many times we don't know what to prep them for.....just be ready for the world out there because the world isn't changing for you....you have to be ready to greet it, hang on with both hands and ride. THis is what we have to get the boy ready for....and anyone who is going to take adavantage of him, be mean to him, make fun of him....he has to be be ready.

Life changes so fast....blink and it may be over.








Saturday, March 24, 2012

Changes.

I don't know if I am really sick or just allergy sick. In the past I have gotten allergy symptoms and sinus infections all at the same time. So with my head exploding and the green stuff....well lets say I am up for Mother of the Year.
Not really.
My stuffy head means I am a little bit out of sorts- that's a lie. I am the WORST patient that ever walked.
I hate being fussed over and I much prefer to be left alone to suffer through my agony. The refrain is "Get out of my way." or "Go someplace and leave me be."

For example, the other evening, I threw my back out cleaning/scrubbing the shower door and bathtub. I am certain that the cuter half does an adequate job cleaning the bathroom- me getting on my hands and knees = back out = I'm out of commission for at least a week. I did. Igot up, pinched a nerve, threw out my back and whammo there I am with an allergy head and a backbrace to boot. I am up for nothing but I still go into work to move my desk away from the "Bahama Breezes" that BLOWon my head all the time and have assisted in my illnesses at least as long as I have been there.

I came home, crashed out and thought I was doomed to an early demise with the pain in my back. If cute one had listened to me and used the massage oil stuff I had bought years ago for his bad back and used it instead of the BenGay wanna be....well the brace would have been gone that morning. So instead the brace is gone this morning....although I am still stiff....at least I am not walking like Granny Clampett.

In my ultimate wisdom, I decide to chill out the entire day. I was in my jammies and not up to moving about although the cute one wants to take me out to dinner to yet another closing restaurant....

This time it is Hoolihans. If you have ever been to one, it is consistantly good. Food is pretty average but they are very good at what they do have on the menu. We have had a lot of life things happen at this restaurant. We celebrated the cuter half''s store change with my parents, and my cousin....we went to ice sculpture shows with my Mom, we went there to celebrate the boy's good grades and if we wanted a treat. This was all before gas was up to $50.00 a tank (change is good, yes?), and the boy was still eating off the kiddy menu with the free ice cream that he didn't like.
Anyway cute one and I went out for a last dinner at a place that we liked and have had many family parties and meet ups there.
There were many nights where we went there because it was near a doc's office or we were up there shopping or it was easy. Now we are limited again to what we can find, locally or what can be made at home.....eating out with gas at $50.00 a tank is not a regular option for those on a budget.

We haven't told the boy yet.
He will be crushed. We did bring home some boursin stuffed mushrooms....and horseradish sauce.

Like with most changing situations we know the boy will blame this restuarant closing on the current president. IT isn't the current president's fault, as we have explained to the boy.....the president made promises he didn't know he couldn't keep (everything to everyone all the time). When you don't have all the information and you make a pie crust promise (easily made, easily broken)...well it is something that makes it hard on everyone in the long run.

Kind of like other life changes, about buying out house, when we really need a bigger one....not going for a house we know we could have lived in but would need a TON of work so we didn't even make an offer (my parent's old home). Then wondering if we did the right thing and then thinking that we are where we are for a reason and we have to keep things going no matter what. Although we are pretty worn out, the house is small and the yard is great but now that it is 3 adults living here it is a lot different than it was when we bought....

We constantly wonder if the boy is going to be able to work at a decent wage...what he is going to be able to do as an adult and if he keeps up with getting C's because someone at school told him he was average and doesn't have to try harder (get your head out of your butt please and SHUT UP). Because the boy has Aspergers that means he has to try harder. WE don't need morons telling him that average is acceptable. At this rate, with his crap grades he won't even get into college.

I need another Tylenol....maybe that will help me sleep tonight.
Change is good....I still resent some of the changes that have been forced on me. Although in the long run it might have been a good thing- tonight I am questioning the "Why's and Wherefore's" of such changes.....

Wednesday, March 21, 2012

cess pool of emotions

I like this title.
I think that many times people are a cess pool of emotions when they decide that they know more than the parents do about their disabled kids.
the boy has been endeavoring to NOT be overtly emotional. He has been working hard at growing up and although the responsibility he is considering scares me a bit....well I know that he can handle whatever happens after he has been trained up a bit more.
I've been reading about people cutting drama out of their lives. Many of my friends have done it....many have cut us because they beleive that we are too dramatic (that's sad, we are boring). But over all we have been in a good place since removing the problems. It has been a relief over all.

The boy has to learn the same thing. Cutting the drama, for himself and not tolerating it if it affects him in others. I am hoping to get him into a new group of drama free people. I think we have....and that is a good thing. Although I know he is lonely, he wishes for many things....I don't know if it will happen but we try to do the best we can to help him.

I think that drama, well, the people doing it are really unhappy in their own lives. They think something is missing....or they hope something will be found....or maybe it is an emotional/spiritual hole that isn't easily filled.

Although I am not the poster child for perfection of religion. I am not able to reel off Bible verses by the score....I do know that if I didn't have the faith that I have I would have cracked up after the first doc visit when we were told the boy was not salvagable. Which leads into Bible stories, we all have our favorites.....

My favorite story of the woman giving her last denari is one I can relate to on many levels. She had nothing left but gave what she could and what she had, we do the same thing....we give....and our giving is a little different. Ours is more, well, social. We are making the boy not be a drain on society....he will be a useful and functional person and as I joke, not living in our basement with his video games.

getting back to the cess pool of emotions...it is all relative really. Maybe things aren't so bad. Maybe we should all be happy with what we have....and maybe that empty spot in our hearts needs filled with the love we have for our Aspie kids and how to fill up the space....

Loving the boy the way the cuter half and I do.....well there is nothing like it. We don't need the drama or the cess pool...




Monday, March 19, 2012

Gen nights make me weary.

We were at a gen thing several nights ago.

Mostly those nights just make me tired.

That night I was not going out of my way to say "HI" to people who could really care less if we are there or not. This particular night I was too tired to try....no point really, as we are the parents of "that kid". Making an effort was just more than I could bear....and yes us happy, stupid special ed parents get tired....of a lot of things.

We go to these things be supportive of the community we are in and the programs that they have; fortunately the people doing the program are willing to let an Aspie participate. For what that is worth, the boy may not be able to participate much (sensory overload). He has been in the same sports since 6th grade and for a kid like him it is a big deal to be able to do it at all. Most gen people don't get how HARD it is for the boy to be doing this (mentally and physically). In fact, one parent made a comment to me about how the boy "talked" while doing the sport....Ilooked at her in amazement and responded, "Do you realize HOW HARD this is for the boy to be out there doing this night after night? Have any of you any comprehension the aversion to contact, the smells, the sounds everything is abhorant to him? Yet he comes, does his best and has minimal support from his teammates?" Remembering that conversation kind of put in into the mood I was in that night; I was there but not because I really had an overwhelming desire to be.....

So, on a regular night when I am not tired, and not mentally exhausted; I could have faked a smile and a bubble laugh and gone on with my usual charade. Just not able to pull it off the other night....it has to be horomones or a full moon. Or that I am tired. Just tired of forcing, pushing and shoving the boy into something that I have told him he only has to do for one more year (he might miss it though we will have to see).

Then he has to join a gym and work out with us. We will see how well THAT goes.

Sunday, March 18, 2012

Bert is in charge.

For those of you who don't know who Bert is....he is a royal tabby cat.This regal being came into our lives a number of years ago and has regaled  us with what we call "Berticus Tales".
Bert, or Bertram, is a kitty from the Buddy Foundation. We adopted Bert when the cuter half and I decided that we had enough stuff and a new house member would be nice.
Bert decides who goes where. Bert tells me when to get up, when it is breakfast and where the other kitties are in the house.
Bert is the chief felion. Trouble comes next. Trouble is big eyed and very curious, hence the name. Trouble jumps on the counter and broke ALL the wine glasses. He also got into the boy's meds, and had to go to the vet for the day and be observed.....Trouble is a BIG boy and purrs a lot. Then there is little Garfield (named after the President, not the comic cat). Garfy is a little demon spawn. Cutest little face ever but what a mischief. Always doing things to get more attention.

Each of  these little charmers have their own personality.

Just like each Aspie has their own personality. EACH kid is a little different and things are done a little different each time.

Several months ago someone asked me (again) if there was a "list of services" for the local school district.This is a common lament. Completely UN-doable. Parents wanting a "list" of this nature are expecting the schools to limit themselves ONLY to that list. If someone needed something different it may not be available. Ergo, no such list exists or would be appropriate to expect or ask for.

I told them no that they would not get a "list"but they should look at what would be appropriate for their student and check out the school. You go to your school in YOUR neigborhood. there is no need to  tour EVERYschool in the district and pick one. That only makes your kid look a little out of sorts in the neighborhood. We had a different situation here but we moved from one side of town to the other and intially our son was at his grandparents after school every day.....so it made sense for him to spend the last few months at his regular school than to make a major change to a different place and start all over.

Demanding a different school doesn't make sense really....you live in the neighborhood, why would you go to a school in a different town on the other side of that town? No purpose really. Programing, and services are all the same....maybe class changes are different....or bell schedules. But really putting the kids in a place where they are going to be different than most of the kids in the neighborhood doesn't make a lot of sense.

Like with the different personalities of our cats, each school has their own personality. Location, may have something to do with it....History may have more to do with it....then test scores and a whole bunch of other stuff. Like with my cats, each personality has it's own way of doing things. Each of us believes our way is best....kind of liks school spirit.

However, for kids like ours, it is best for them to learn to be flexible, learn the gray areas and learn that life is like a kitty cat......each kitty cat has their own way of stepping into the litter box. There is NO "I can't because of my Aspergers." (the boy gets in BIG trouble for that one) "I am a cartoon geek." Well, the reason no one calls is because this is all you talk about. YOUused to be interesting, liking Frank Lloyd Wright, Abe Lincoln, Art, Music and books. Now it is all cartoon crap all the time- which means that you are GROUNDED from any and all cartoons until I say otherwise. The other statement, "I am a computer geek." - I admit it, I did sniff at that one.The boy is ONLY a computer geek when he knows MORE about the computer than I do and so far I got him beat hands down on that one.

There are some who don't appreciate what I write or how I write about things. One in particular thinks I am a horrible person (if only they knew what I think of them). I don't write to make other people happy, I write the real part of life. If that means I am comparing the boy to a puppy....or our kitties....well yes I am. The boy's personality is DIFFERENT than most other Aspies. IF you were to look at the boy, he carries himself differently....He is active, he is busy, and he has many different ideas. Right now he is stagnating with this cartoon crap.....and I did tell him he is cut off until he starts talking about different things (anything will do- not being fussy). One more coment about which Marvel super hero is better and I am going to turn his bedroom into an aquarium for Aquaman (my fav, he could talk to dolphins using sonar) A newer topic is about Modern Plays from the 1930-1940's.....lets see if he can keep that up.

Getting stuck on topics is kind of like Trouble being with his favorite mousie, until he looses it. Trouble's mousie came from IKEA and Trouble played with it ALL THE TIME. One day Trouble mis-laid his favorite mousie and I found it today.....Trouble had replaced it with his carrot....then a fishy toy from a store....now he is back to his mousie again. Kind of like the boy going back to his comfortable topics (cartoons) that are now inappropriate due to his age.

SO going back to the original statement, life with kitty cats is like life with the boy....

(geez get a sense of humor will you- it's funny- watch your pets and you will see it too- unless you are a dormant soul)

Thursday, March 15, 2012

Social Media Networking

Sounds like a job interview doesn't it?

Wht it is? An important tool for most of our kids who are at the lower end of the social skills scale.
In a dream world we would instinctively know what to say and what not to say on a social website. These social websites include facebook (FB), Myspace, Bebo and others. They are used for business, catching up with family and friends and to play games on.

I like going mindless and playing a game or two. A while back I was ill with pneumonia and I built up several amazing farms and a really cool kitchen......while catching up with family and friends. When my life changed so did my social networking site choices. Rather than fool with 3 or more I have worked my way down to several.

Learning to USE these things as a tool in career and employment has been a learning process.

This is NOT something the kids are going to learn at school, unfortunately. It is a thing they have to learn at home. Using the social media, like Twitter, and the social websites sounds like something out of a magazine or movie. It isn't. For families like us it is a  real deal thing. We have to teach the boy appropriateness, and more importantly, he has to learn it for himself.

Several weeks ago the boy had posted something. I am not going to delineate it here, but if you are on his social media you know what it is. It made me sad, but it also made me so angry I could have spit nickels. Why say it here? Why mention that? SHHHHH.

Then I went back to the phrase, "Keeping secrets means other people can treat you like shit." (OK it's a Penelope Trunk paraphrase).....so for him he felt like he needed to say it, he got it out there....he got support from family (which we all appreciated) AND he learned that wearing his heart on his sleeve on a social media site doesn't work well for people his age.

Emotions, unless it is their own is not necessarily a positive thing. Compassion is not there- just like with an Aspie (it is all "I, me, my").


Fortunately for us we have great family that rallied and did support the boy and he did appreciate it. However, learning to be appropriate on something that is searchable is a really tough thing. How many times do we hear about kids who are doing stupid things that get out of control because they didn't know people would show up....hello what planet are you from exactly? Doing this by trial and error just doesn't work and our Aspie's especially need to know what to do and how to do it. The boy doesn't get on there often and I know when he does it either works or it doesn't  it just depends.

I will say that I think there should be a class JUST in social networking. Teaching HOW to use it....what to post and when to keep your pictures OFF the computer. Teaching how to shake hands, or how to meet and greet, well FYI, most of these kids can do that already...they choose NOT to do it so lets do something else now that is useful. The current class he had, I think it might have been called Information Processing was the biggest waste of time ever. These kids HAVE COMPUTERS and know how to use them. Don't waste their time with this kind of class that is not relevant to what they need at school and life.Learning to type a business letter is fine; most progressive businesses have their form letters pre-done- all you need is your name and address and if you have it working correctly you don't need to type that in either.

These kids NEED to learn what to do on Social Networking sites....HOW to make comments and what to say and what NOT TO SAY.....How to set it up and make it private....how to be unsearchable . What is private and what is public.....THIS is what they need to know. Not the Tweedle-dum Tweedle-dee thing. Their are jobs, opportunities and friends that can work their way OUTSIDE of what is on the computer....it takes skills, some saavy and all of that can be taught....



Monday, March 12, 2012

6 things you don't know about special needs parents by Maria Lin

This is an article about special needs PARENTS. Although this little guy has a chromosonal disorder most of us parents feel the same way- if we had the guts to admit it.

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

I am only adding the below article because I am afraid that the huffington post will take this down evenually. IT is a great posting and I would like to have it to refer to...... Please note the things that really struck the cuter half and I are highlighted in red. You may have other things you think are important but these are ours.

6 things you don't know about special needs parents by Maria Lin

My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.

2012-03-09-images-mejacsubwaysmall.jpg

Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.

5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.
Follow Maria Lin on Twitter: www.twitter.com/marialinnyc

Friday, March 9, 2012

Pretty is as pretty does

Do you remember that old saying? My parents used to tell me that all the time.

What does it mean? The definition from http://idioms.thefreedictionary.com - prov. It is more important to treat people well than to be good-looking; just because you are good-looking does not mean you are a good person. (Said only of girls and women.)  appears to have it summed up pretty well.

With some recent personal events coming up the cuter half reminded me last night to stop pretending about certain things. Oddly enough when a choice is taken from you rather than you giving it up you kinda wish you had it still. He doesn't seem to grasp that.

So anyway, we are in the midst of a minor crisis with the boy. He is at the point where gens won't bother with him and he is uncomforatble with most of his other friends. He is at a loss.
Since the cuter half and I are not terribly social (we don't run up to people or force ourselves on anyone....well it makes for interesting conversations in the evening.

Since I was in the doldrums the other day, and then 2 people reached out to thank me and actually miss me (shockers) it made me realize that maybe the contribution cute one and I make might be valid after all. I must have been reading too much People magazine or something....just because we aren't on the cover doesn't mean we don't count.....we aren't looking for the acclaim so wondering why it isn't there is kind of like shooting yourself in the foot.

Back at the boy crisis: He is still lonely. I know this to be true (he told me), he is a trooper though and goes back every day to try and do his thing and handle life better and work on his problems.....he asks for help when he needs it (mostly). We had him on a social networking site. I think he still goes on there but I haven't been checking it.....most of the time I post stuff on his pages but he doesn't comment or say anything so I am not sure he is reading it or not.
He doesn't want his Mom embarrassing him which is what I do anyway. As I tell him, "It is my job and what I live for." Ergo, I have cut back on checking on his social sites. He is growing up....it is time for him to make some of his own poor choices.

The thing is though, most people don't want to hang around him. It is fine to see him at school or at wherever, but actually hanging around him and talking to him is kind of uncool to these kids. He had a problem a few weeks ago with some girls (my thoughts on teen girls- ugh) and since then he has been locking himself up in the library (at least that is what he tells me). The biggest problem is that the administrators took the side of the girls because they are girls after all and not maninpulative or anything (did you know? who knew?). A case of pretty is as pretty does and obviously these girls aren't very pretty....

Aspies, like our son, have problems with people who are inconsistent. Ergo, being in school means that there are social inconsistencies all over the place. The boy doesn't get it. At all. Another ergo, he is hiding in the library. Books at least, are consistent....they are paper, they are readable and they are something and someplace to go where the social component is not so messed up and confusing....
Yet in class they are teaching the boys to shake hands (Tweedle Dum and Tweedle Dee "Now we are going to shake hands, shake hands")?

OMG - teach these guys how to manuver the social aspect of the schoool, teach them how to realize that the people giving them a bad time are really loosers and not all that they think of themselves. Teach them something- anything? Shaking hands? What is up with that? The boy is going along with it but did tell me that he is uncertain how to handle the rejection when approaching a new person to introduce himself....(!!!!!!!!!!) I told him to talk to his teacher. (I know, I am a BIG chicken)

So in the mean time, what to do as parents? The cuter half and I have talked to the boy and encouraged social interaction with others....but have done nothing more. We don't know what else to do.

Thursday, March 8, 2012

Happy Birthday

to my brother.
Hope you enjoy your day bro!
Have fun!

Wednesday, March 7, 2012

Hello, it's me

I think the cuter half is confused.

He keeps telling me I love certain movies that I really don't care to watch or see again. I think he is either drunk, gone stupid or accidentally stoned and forgot to tell me.

Not really.

I think he is trying to talk me into liking certain things so I will sit there and be mind numbingly bored and he can justify sitting in his recliner and not having to do anything. I am not up for that right now.

Actually, I kind of have a conceptual issue.
It isn't something I would normally talk about but it is really bothering me. Wait- what am I saying? I normally talk about a lot of things on here that are probably pretty offensive and very indelicately worded-

Here it is: we are finding that we hear from people only if we can do something for them. We don't really mind being the "go to" person but it would be kind of nice if it were reciprocal and we don't feel like we can really bother some people with what is going on. We are happy and proud of the boy and we are concerned that it might sound bad if we say anything so generally we don't talk much about it at all if we can avoid it...

Other people who call and make demands are just doing that making demands and then they leave and we don't know where they are, what they are doing or honestly care that much.Those aren't the ones I am refering to in the above paragraph. It is the ones where I feel like we are being used and once we are out of whatever it is then our usefullness is over so all is fair to be dumped and move onto the next ones....we are used to it but it is still something that kind of grates on us.

A Sunday school teacher once told me that I was using the aide in the Sunday class (the aide was there for my son, not to help the teacher teach the class) and after that I have been very conscious about NOT intentionally using people (on another note, why in the world would I want to go to church after that experience??? I should have figured it out then- it was a sign from God, I know it). I know, I have not been perfect....but damn it I try not to be a user.
Most parents in our position use whatever they can, whoever they can however they can. Kind of like an easy girl on a cheap date (bad allegory; the only one I could think of). Yes, I have explained this  line of thought to the cuter half and he agrees that there are special ed families that do that.
Now, if you talk to certain people, they will swear we would use anyone all the time at any time. They are the same people who think that their kids are perfect and don't go around with a bag spinning on their heads too. We work hard with the boy. He doesn't get away with poor behavior, bag spinning, or bad grades....we are very tough and have exceedingly high standards.

Most of the time I am figuring that we just aren't on the same wavelength with some people. Either that or the cuter half and I are swearing something is wrong with us. We view things so differently.

For ourselves we are looking at the boy getting his drivers license, graduation and other things coming down the pike.....it seems like the plans we have are MUCH different than the plans most people have. No living out of the basement here (no basement....the crawl space is too shallow and there isn't a good direct entrance).

 Or maybe I am just hormonal (definitely possible) or bummed out and tired (also possible).

Maybe I am on mental overload....it may be time to lock myself in the bathroom and just read an old trashy book and forget for awhile.....if you have ever read a victorian novel they put the modern ones to shame. No sex but seriously the other stuff is really eye opening (read Vivia) Trust me....get over the old brittle pages and old binding and.....well you will see.







Monday, March 5, 2012

Accomodations and Modifications

I messed this up several days ago and we all need a reminder:

An accommodation is generally thought of as a change in the course, standard, test preparation, location, timing, scheduling, expectations, student response and/or other attribute which provides access for a student with a disability to participate in a course, standard or test, it does not fundamentally alter or lower the standard or expectation of the course/test. (it is important to note that we do not currently have national agreement on the terms used to refer to accommodations, it differs from state to state. Accommodations are basically physical or environmental changes, generally referred to as good teaching strategies and include:⇒ Extended time, frequent breaks, varying of activities⇒ Change in classroom, preferential seating, physical arrangement of the room, reducing/minimizing distractions, cooling off period, sign language interpreter ⇒ Emphasizing teaching approach (visual, auditory, multi-sensory), individual/small group, taping, demonstrating/modeling, visual cues, manipulatives, pre-teaching, organizers ⇒ Taping texts, highlighting material, note taking assistance, notes provided by teacher , calculator, computer, word processor, Braille, large print ⇒ Directions given in small, sequential steps, copying from book/paper, length of assignment shortened, format of assignment ⇒ Positive reinforcement, concrete reinforcement, checking for understanding, study guides, before/after school tutoring ⇒ Reading test verbatim, shortening length of test, test format changed (multiple choice vs. fill in the blank) Parents Advocating for Children Accommodation vs. Modification Accommodations:• Environmental • Presentation • Assistive technology • Assignments • Reinforcement • Testing Adaptations Modifications:♦ Lower curriculum ♦ Materials simplified ♦ Grading changed ♦ Lower expectations ♦ Testing measures lowered Springfield Parent Advisory Council PAC to Special Education 413-787-7194purchased@sps.springfield.ma.us http://www.sps.springfield.ma.us/pac/


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(Again, it is important to note that within special education the terms accommodation/modification are often used interchangeably, yet the courts see accommodations as leveling the playing field and modifications as changing the game entirely.) A modification is a change in the course, standard, test preparation, location, timing, scheduling, expectations, student response and/or other attribute which provide access for a student with a disability to participate in a course, standard or test, which does fundamentally alter or lower the standard or expectation of the course, standard or test.Modifications involve deliberate intellectual lowering in the level of materials presented.⇒ Presentation of curriculum is modified using a specialized curriculum which is written at a lower level of understanding. ⇒ Materials are adapted, texts are simplified by modifying the content areas—simplifying vocabulary, concepts and principals. ⇒ Grading is subject to different standards than general education, such as basing on IEP goals. ⇒ Assignments are changed using lower level reading levels, worksheets and simplified vocabulary. ⇒ Testing Adaptations are used, such as lowering the reading level of the test. Accommodations vs. ModificationsAccommodations level the playing field while Modifications change the field your playing on. ⇒ Decisions regarding the use of accommodations and/or modifications must be made on an individual basis by the IEP TEAM. ⇒ Decisions must be based on the child’s unique, and individualized need, not on what we do for all kids with a particular disability classification. ⇒ The use of accommodations or modifications should enable the child to demonstrate progress. ⇒ Individual Education Plans, IEP’s should offer equal opportunity for success. IEP’sshould not modify your ability to obtain a diploma...be careful what is written in your child’s IEP.

Sunday, March 4, 2012

Sage is astringent

Tonight the cuter half made soup.
Usually the soup he makes is a community effort. We all dump something in it even if we don't cook much (meaning me). Tonight the cute one was following a recipe. The recipe LOOKED good, it sounded good. IT tasted God-awful terrible.
No it tasted worse than that.

It was so bad there was debate if we should pitch the whole thing or just add something. We finally decided to pitch the broth and start over.

If you think about it. Leaving out an ingredient in this recipe is a good idea. Leaving out the sage would have saved us a TON of time and trouble. But we one follows a recipe you think you have to do it all one way.

Here is the correlation.
Most people think that kids on the spectrum should be handled all one way.
I know someone who says that because her kid on the spectrum lies, they all do. She also says because hers runs around in the stores and spins with a bag on his head they all do.

They don't.

Not following what the first doctor told us ("Take your son to a home and leave him there and forget you had him.") was a life altering decision.
It means we are sceptical.
It means we will ask the harder questions.
It means we work harder than most people to train up the boy to be able to work things out on his own.
It means we are tough.
It means we hide behind the toughness and we get hurt easily.

It also means that you can't snow us very easily and we are not going to follow someones orders blindly like lemmings going to the sea.

Maybe if more people "Took the sage out" they might be in a different place. I know allegory is not spoken by you....what i mean is if your gut thinks that your doc is diagnosing your kid incorrectly you have to speak up. I did.
In fact, when the doc told me to bring the boy back the next month I laughed at her. I then told her the following, "You are funny. Do you realize that you have a waiting list that is 6 months out? You are 2-4 hours behind on all of your appointments? I take a day off work just to come here. I will go out to your receptionist, tell her that you want to see us next month, she will shout at me that it isn't possible and I will have to take what I can get, which won't be next month." I then went into peals of laughter.

I don't think anyone had ever laughed at her before.

This doc made me rethink how I do a lot of things. I will listen to my body, I will listen when the boy tells me he feels lousy and why that is the case. I will tell my doc what I think and why I do. It is rare that my docs will argue with me and they know I pay attention to my "warning signs".
ON that note, the boy is only ill when he is so sick he doesn't argue about going to bed....and sleeping. His ability to fight even when sick is notorious. Several weeks ago he was so sick he was barely upright. I am RELIEVED that the cuter half and I didn't catch it. This kid was in bed for several days, tossing up and from what I heard did the projectile vomit thing in 3 rooms if you count the hallway. As his pediatrician says, "Sometimes it is better out than in."
Being sick with a viral is not the same as an incorrect diagnosis.

There is something to be said for what the doc told  us regarding the very first diagnosis; if we were completely self absorbed we might have paid attention to her. Sometimes I wonder if we should have. But then I realize that the doc was the shortsighted one. I really believe that she was either completely behind the times, or maybe just worn out. After my episode of laughing at her she retired very abruptly. She cut back her practice to one day a week, if that, and no....we didn't follow her. We wisely went elsewhere.


Maybe the doc we first should have cut back on the sage in her diet. Making a change could have done wonders for her patients that she misdiagnosed and for those of us who, in the end decided that she didn't know what the heck she was talking about.

Sounds to me like doc #1 needed to read the Julia Child book about French Cooking. It might have taught her a lot.

Friday, March 2, 2012

Breaking stuff

As the boy gets older he has been breaking stuff.

First it was the screen door in the back of the house, then the screen door in the front. Last night it was a bar on his Ikea dresser that he had yanked off and broke. He claims on accident but if he had used the brains God gave him he would have looked else where for a t-shirt.I went thru the T-shirts and got rid of a few and told him he was going to have to deal with less.

He wasn't happy.

After this experience the cuter half and I were discussing the waste of money. He doesn't need new clothes, although we do regularly buy him jeans because he is getting so tall. He has to be responsible with his physical environment and that isn't happening.

In the past we have charged him, made him pay, for broken things in the home. When he slammed the car door so hard he broke the window he had to pay the $250.00 bill himself and in increments. When he lost his jacket, same thing he had to go out and buy a new one.

We constantly hear how "cheap" we are. From him. And from other people. Honestly I am sick of it. We are cheap and if he and others realized WHAT the economy was they would get their heads out of their butts and realize that they aren't helping by throwing money away. We are living UNDER our means by choice. Both of us have had MAJOR career changes and we are sort of fixed now but it is by NO MEANS permanent. If you haven't heard, the job market is full of temps, consultants and others that don't cost as much and are more easily replaceable than a permanent employee. It is what it is and we either bend and do the temp, or consultant work or let work break one in half.

Last night I was sitting on the boy's bedroom floor fixing a dresser. It is NOT well fixed by any means. It certainly isn't the quality of the armour my grandfather made in the same bedroom. This dresser is repaired but it is not a permanent fix. IT might not be seen as a PERMANENT piece of furniture: for us it IS a permanent piece of furniture- we can't go out and buy new. Certainly the "Quality" of what we would want....well you aren't going to get that in the current retail market the way it is.

We can't go out and buy him a new dresser. We can't afford it. But we can make him buy his own. Whether at Ikea or someplace else.

The boy is going to LOVE that. Hopefully he will learn that pulling and dragging on things/furniture, and slamming car doors is not an effective way to make your point.

He did this because he was p'od that we were out and he had to stay home and do homework. Oh well. Live and learn dude.