Wednesday, March 31, 2010

What was I gonna say?

Here I am. We finished several scenes in Romeo and Juliet. I had a great topic all picked out and WHAM. Forgot where I was and what I was doing.

This is a common theme in our home. There are many times I am in the middle of something and my son will ask me to help him and the next thing I know it is 9:30 and my brain is fuzzy. As a kid, I loved literature. Even the smarmy stuff, I read Gone with the Wind annually every fall. I loved Shakespeare and my favorite play was Taming of the Shrew. I was the kid that read this stuff, for fun. I liked watching ballet, and was bored when my brother in laws wanted to watch the game. So I would leave the room, take the kitchen TV to my room and glut myself on programming that would bore people stiff.

Not so my child. My son couldn't tell you much about Romeo and Juliet, except that he believes it is all Rosaline's fault (prior post) and that he doesn't like the early english. To get him to concentrate this evening, I ended up sitting in the hallway with him reading Act 3 and 4 and reviewing the questions for class.

I never really understood why he doesn't like to read. I would read stories to him when he was little, Beatrix Potter, Goodnight Gorilla. and Goodnight Moon and any others I could garner his attention with. Most of the time he would carry his books around but  evenually all he would read were the encyclopedias or the books with lists in them. Book books have not been part of the equivalent. I know he can read, and would read but won't. Sadly, he claims he is not able to imagine himself in a story nor is he able to loose himself in an idea. It is all outside for him. He tells me he has to experience it or have it completely explained to him or he doesn't really understand the story that is going on.

Like at church, he loves going, loves the music, doesn't understand the message at all. The pastor is marvelous, but for an Aspie, the concepts are WAY too obscure. It is to the point now where if we ask him how his service was he will say, "Fine, but I didn't understand a word the pastor said. It doesn't make sense to me and it is very frustrating."

As a parent, and a lover of good books, all of this is hard for me to understand. I wish I could make this more clear to him, I wish I could instill my tastes in publications for him, I wish he would read a book. He has bookcases full of all sorts of books. I read his books, he rarely ever touches them. In fact, they would not see the light of day unless I read them. To me, that is sad.

There is an old quote, "A good book is like a good friend." What that means is that a good book is something you can refer back to, garner comfort or just shut your mind down and enjoy.

THAT is what is sad. He is missing out on good friends.

Yesterday, Dairy and the Boy.

Yesterday was weird.

For me, overall, a decent day, I had to run around with a friend and do some things that needed done. For the boy though, he was lost in a fog of panic, fear and negative thinking. It is scary to see your kid like that, it was a throwback to the dairy days when his ped was recommending 64 oz of milk daily and our son was a mess.

Being lactose intolerant is something that many Americans and others have to deal with. The fallacy is that everyone should be drinking milk all the time. Yes, milk is good for you, and yes you should be able to digest it just fine, but NO if you are not able to should you drink it raw or have uncooked foods with dairy/milk/cheese in it.

When food is cooked, the enzymes change, our son is able to tolerate a small amount of dairy in cooked food. According to what I have been reading and seeing lactose intolerance is something that can be developed over time. Isn't that interesting? I had thought it was genetic, and here it is something that can be environmental.

The National Institute of Health has a site

That discusses lactose intolerance. Although, this is not a term we have used with our son, I am beginning to think that we need to use it. His inability to digest the proteins in an all-dairy meal makes things very hard for him. His emotionalism and his inability to control his feelings are a reaction to the strong amount of uncooked dairy in his food.

So what does this mean in the long term? Well, I am thinking we need to get some Lactaid and then get a digestive enzyme to help the processes. This is a touchy issue; there are soy, rice, almond, and other things one can use instead of dairy. There is nothing wrong with dairy. I LOVE the stuff personally. However, when my kid is having problems and that is the most recent thing he has eaten. It is like Emeril's "BAM" suddenly, it all makes sense.

In the end, watch what your child is eating. If necessary contact the school, mentioned that mozzarella sticks is NOT a meal but a shared appetizer, and ask for their help. Generally, a school will cooperate with you, as they want your kid to learn to make better choices too. Makes their job easier.

Tuesday, March 30, 2010

Did you see this?

If not, you need to. This article is spot on about our kids and gut issues. They are thinking it is protein and the inability to digest it well. I think they are right. My son is not good with dairy products. If it comes out of the fridge it is "raw" dairy. If it is cooked at 450 degrees for 30 minutes it is "cooked" dairy. In our house, after dairy has been cooked, it is OK. If it is undercooked or raw, it is not acceptable.

There are supplements, and reading the labels that will help you figure out how much calcium your kid needs. Do your homework, and then decide. Dairy or no dairy, that is your question?

Monday, March 29, 2010

The first day back to school

It always is the same.

the first day back to school, whether it be in the fall, winter, spring or summer is generally a challenge. I don't think it is the kid really, although the stress is high and he is nervous. It is the chattering. It is constant. Kind of like the "Chatty Cathy" doll only higher pitched and more obnoxious.

Right now, my son is in bed. Thank goodness. He has lost video game privileges indefinitely. Although we may have to relent for the upcoming family party or go completely insane. He had spent the before bed time yelling and carrying on about how he was going to bring 2 heavy cookbooks to school to give his teacher ideas for the class.

From my perspective, he has a computer bag that is limping along. I sewed it and made some major repairs so it is usable for just his computer, and a large binder that carries all of his classroom materials. His gym bag is full, he needs a change of clothing for his afternoon workout and a snack, so that is packed.

There is no room for extras.

Trying to get the kid to think beyond his nose is another story. He has the bags, which are not fully functional (a strong wind and it will all be on the ground), why can't he use them? he doesn't need to bring stuff. Unfortunately, this seems to be a common Aspie trait. His one buddy does the same thing. Our son knows the game too. He does, "I am feeling insecure so I NEED to bring this ______." or "I will get bored in the car." (for a less than 5 minute trip).

Give me a break!

After the hissy fit he threw this evening, I threw in the towel. Sent him straight to bed, walked over to his game table, picked up the hand held video system and took it, then the charger straight out of his room. No turning back baby! He is blaming me for his problems. when it is HIM making the poor choices, acting like he is 3 and telling me that I am too strict. Kid, you ain't seen nuthin' yet.

These are the times when I want to think he is like a "gen" kid. I want to believe he is normal in there somewhere. All I can do is hope that he comes out of all of this with some degree of normalcy and that he is able to got to college, cooking school and get a job. Now, he tells me he doesn't know if he wants to make the same thing over and over like many chefs do because he might get bored. SO WHAT! GET BORED. It won't hurt him to suffer some boredom; that is what most jobs are... boring. After this evening though, I have to wonder....will he make it? What will happen to him when his Dad and I are dead? Will he need help and who would help him? What if those people are gone too? What then? SO many what ifs when the boy acts like he has gone through the stupid forest and hit every tree twice.

I know, I am in a snit myself right now; itching for a battle (so stay out of my way), after what he has put me through. Put it this way if you are going to yell at me you better have a really good reason; he doesn't have a good reason. The kid has annoyed the heck out of me and it has been nothing but an argument since he got up this morning. Then badgering me over some dumb video game and asking me again and again to look for something he lost. You want it you look for it. Don't ask me to take care of it for you.

I love the first day back to school.

Sunday, March 28, 2010

Rising to the challenge

Recently we had our son's IEP. We didn't know what to expect. The past one was, difficult, and we were a little leary of walking in the door. As I told a friend later, "I didn't sleep at all the night before." It went well, better than well, Ok flipping, fabulous, great, and marvy-bar. Our son will be getting a certificate to cook in a restaurant by the end of next year. That is not the only highlight but the one worth mentioning here. Our son had risen to the challenge of his first year in High School.

Our son's most recent encouragement, in fact, came the other evening while watching the new Jamie Oliver program. The boy fought us the entire time, "I won't like it it will be awful" He saw that Jamie had taken this boy to his kitchen and was giving him private lessons on how to cook, what to do and how to do it. Our son was mesmerized. He is cooking... and our son related to this boy on TV who is overweight, shy and very intelligent.

So what does all this mean and how does it apply to Austism and Aspergers?

We conducted an experiment this weekend. We celebrated with our son for 3 days, eating out, eating junk food, and coming home and plopping on the couch. We have been sicker than sick for 3 days. We are crabby, angry, irritable, our stomachs are a mess and we are now more than determined to eat better. What we learned is that all the junk we ate just made us sick and we can't allow bad food to take over our bodies. It also made us realize how far we have to go. Being incapable of functioning because of several meals of junk food means we really need to go without the junk entirely. This means that we are rising to the challenge

It is so EASY to fill up on the garbage and then come home and still be hungry. How is it that after 3 days of this, I still have a headache that won't go away, my husbands stomach is in knots, and our son has had recurrent nightmares. As my Dad would have said, "Garbage in, garbage out." I think with the ease of getting the fast food, it is that, the ease of getting it. Eating it regularly is not only bad for the body it takes some of the soul of eating out as well. As a family with a child with a disability, we need a "break today". Fast food is our way out. OR at least it was our way out. Not anymore. We are rising to the challenge

At an estate sale, our son found a cookbook that has directions on how to make everything, from white sauce to bread to the correct way to serve veggies. It is amazing. It is worth a shot. Last night we had Chicken and Zuchinni; the boys used olive oil and then added the veggies and ground flax seed. It was GREAT. Again, we are rising to the challenge.

How about you? Will you rise to the challenge, too?

Saturday, March 27, 2010

Living without.

Here in the illustrious Midwest we, well, reuse things. Many of us hit the Goodwill prior to going to the "real" stores.

Today, something different happened. My husband took our son to several sales. Estate sales, church sales, things like that. Normally we go, spend money, find things to possibly re-sell or just hang on to. Our son loves this stuff and many times we can please him and not spend a lot of money. For example, the boy came home with about 6 cookbooks, a video and some other stuff all for about $2.00. It isn't living cheap or anything like that. I think it is more, living with what you need.

For instance, we are planning ahead for him; our son will have a career and a job. As of today, someday he will become a chef, and if we are lucky he will work in his own place with that, what will he need? Well, some signature recipes, a book or two and a large variety of cookbooks for ideas. This kid's cookbook collection would make a librarian weep. He has all of them he can get his hands on. Really, and he has versions that I know I have never seen.

Because we had forced "lifestyle changes" about a year ago; we have learned to pare back. We are hoping to teach this simpler lifestyle to our son. He was overjoyed today with some .25 cent cookbooks and a video. It isn't because he is disabled. He knows to appreciate what he has and if we don't use it, sell it or donate it for someone who does. When he does sell something, he does donate 1/2 of the sale to charity. He is trained/taught to think of the less fortunate and help out with service clubs or whatever is available.

Providing him the litany of things i wish I could do for him, am I back at self pity and the whole "self medicating" thing or is it better that I teach him to live within his means? I will admit, the first weekend after the "lifestyle crash" his TV burnt out. It was caput, no hope of further survival, and no way we could afford to purchase another one for him. We had a 20 year old TV in the attic, we got it down, and installed it in his room. Believe me, this old TV has the basics. I mean, basic, it will run the vcr and dvd player and that is it. Now is that a bad thing? Poor kid has cable in his bedroom, but can't play video games. Oh well. It is better for him to have to get off his butt and change the channels manually (remotes don't work with a TV this old). At first he wasn't happy about it, but he is learning to not constantly turn the TV on and off and found out that if you do that too many times, it will make things harder for you in the long term. No more TV in the bedroom if he ruins this TV set, we would have to find another one and he will be out of luck for a long time.

Although, going without is hard. There are many things I miss (like being a girl and getting my nails done). Is it better to live like we have or better to make do with less? I know I am good where I am. I would like it better if the house was paid for... but until it is, we are living without and using up what we have and working through the ick.

Believe it or not, our Aspie son acclimated to living without better than we have. If we challenge our kids, they will rise to the challenge...

Something else to think about isn't it?

Friday, March 26, 2010

Bullying- and other vents....

How does one handle this bullying thing. We are in the era of "zero tolerance". This is the era of being "politically correct" and being kind to everyone no matter what.

As a parent of a disabled child, this sounds like a load of "codswallop", we are regularly told our children Must learn to get along with others; even if they are little, um, turds. OK I know that is not a grown up thing for me to say. When i have to deal with a kid who is upset about things at school, my rational pretty much hits the toilet...albeit not literally.

In the last several years since being re-introduced to the regular district we have been through the mill. There are advantages to being the only parents in the PTA, and being in charge of the Boy Scout troop at the school. One of the big ones is that you don't have to deal with other parents. Which is a good and bad thing. It is good when you are working in Boy Scouts and want the kids to work a certain way. It is bad because there is no social life to be had as a family.

As far as the bullying goes, I can say that the middle school dealt with it effectively. I can also say that my son was blamed for all or most of it. The worst example I have is the time I was called by the assistant principal and told that my son would not be graduating from school with his class and that he would be suspended. I was later called and informed that the person that accused my son lied. Other students heard that my son would not be allowed to graduate and they told the assistant principal that the accuser harmed himself and then put the blame on my son. They still allowed the accuser to graduate with his class, although my son was innocent and there we witnessed something amazing.

Most of the kids didn't shy away from my son. In fact, at the graduation, if he came over to them, he was pounded on the back, congratulated and generally accepted by the gen's as part of the group. When the other student came by, the crowd scattered....and this was at the pre-graduation ceremony. It is a bleak tale, we were fortunate that other students intervened. It doesn't always happen that way.

Even more recently, our son was being harassed in the high school hallway. He was on camera at the time. From what we heard, he did everything right. He evaluated the situation, and even though he believed he was in extreme danger he got away and went to his practice. What we got when he got home was another story. He was extremely frightened. Since we were able to talk it out and deal with the high school, who handled it well, and has given our Aspie son more tools to work with.

Now what does this mean in the long haul? Does my Aspie son know how to instantaneously deal with kids who are turds and tell him he is stupid, a moron, and retarded? No it doesn't. Does he still want to hit or be mean, duh, yeah. Is there a better way to deal with the problems? Yes there is. WE go back to the training, the practice and the information giving. The constant reminders that he is becoming a man and saying and doing certain things are just not appropriate. Because there is a bully doesn't mean he should bully back. There are better uses of the English language.

There are more current examples, but as they are still being resolved and too close to home we aren't going to disclose them here. Or at least right now anyway.

I think the thing that hurts the most is that the family that was supposed to accept us for who and what we are, generally doesn't. They think we are too strict, and are very watchful, maybe too much so. If they understood what we have to deal with when we get home, like being at a family party and having someone who doesn't know us start discussing the loss of my Dad with my son. Good grief, let's just throw about 10 additional weeks of therapy at us, thank you very much. In fact, I know this sounded terrible, but I had to walk over and forbid my Aspie son from mentioning it at any time. The, "You are not permitted to discuss this right now or ever publically." made me sound like the worst bully ever.

Yet, we get chastised regularly for being the type parents we are and making certain our Aspie son eats enough, as we have to watch that blood sugar, and is being appropriate, because if he isn't there is going to be some cousin (male or female) that will have a hissy fit over something he said. Makes me just not want to show up; there are times that if I could get out of it I would (I have tried). I think this is the only time my husband and I argue about things. When we are at a family party and he ignores everything while I have to stand there like the freaking security guard to make certain it is going OK. If I ask him to help with my son, I get shot down, "Oh, it is fine you are over-reacting. Go find something to do". Usually, by that time, I am so frustrated that I will leave to talk to a friend, or my Mom on my phone in the car. It is cold, but at least I am sane for a while longer.

So what does all this have to do with bullying? This is what it has to do with bullying...generally speaking, a child who is bullied will dish it out worse than they got it because they are angry, mad and maybe don't like themselves very much. The best thing I can do for my son is teach him HOW to behave in that situation and work through the issues to become a better more useful and productive person.

Thursday, March 25, 2010

What do Frank Lloyd Wright, Abraham Lincoln, Route 66 and Guy Fiery all have in common?

I will bet you don't know. Do you wanna guess?

Wait for it....


Yup, they are all interests of our Aspergers child, he likes them all and today we saw a bank designed by Frank Lloyd Wright, a court house used by Abe Lincoln, we drove on historic Route 66 and we went to Del Rhea's Chicken Basket in Willowbrook where Guy Fiery did a show of "Diners Drive-ins and Dives". Rather than spend a fortune on a vacation we did all of this for 2 tanks of gas, the price of food and I believe surprise gifts for the Mom of the house. Let's say under $250, although I am not sure what the boys found for me so I am estimating low.

For us, in the past, we would have gone further and gotten a hotel room somewhere. This time we did a shorter trip, saved some money and had a blast. I guess what I am getting at is how often do we (to use my friend Brian's term) "self medicate" by spending a lot, doing too many things and overstimulating ourselves and the kids on a wild, but wonderful vacation? Did you know Pontiac, IL has an AMAZING war museum? Our son was so excited and saw so many branches of service and their stories, he was reeling. In fact, the head curator, was the Sergent in the story of "Saving Private Ryan". Fabulous and educational. If you ever GO to Willowbrook, you have to go to the Chicken Basket. The mac and cheese is fabo, and just like my Aunts. Amazing. This isn't coming out the way I want it to, but I would like us as parents of kids with a disability to: Stop. Look around. What do you really want to do, or what do you need to do? There is a big difference. Are we doing things to "medicate" ourselves to get through whatever we have to? Or are we going someplace because it is the "thing to do"?

Now this isn't an advertisement, but just to let you know, the smaller less stimulating activities may be the most interesting. I will admit, the boys lost me in Gardner, it was cold and standing in front of a 2 cell jail museum was not my idea of a good time. BUT we did it and we learned a lot of new things about IL. Our son has a variety of interests, and although this was more indulgent than we needed to be for all of us, it was a fun trip and we almost did get our "Kicks on Route 66".

Wednesday, March 24, 2010

Video Games- A Mom's arch nemisis

We started with our video game saga when my son was 9. He had begged for a Gameboy system and we had put it off. I really didn't want him playing the games and I thought it was a real bad idea from the start. Naturally, because I felt this way, my son wanted it even more.

We had suffered a lot that year, the loss of my Dad was difficult, my son cried for him nightly. After a lot of discussion that year, we decided to indulge the boy and pony up for a hand held system. His game collection grew rapidly. Then we decided he was old enough for a real video game system.

I won't say that was a mistake. I don't believe it was. I think being SELECTIVE in allowing certain games to be played is the ultimate factor. We found that certain types of games starting with the letter "M" were very disturbing. In fact, after one evening of allowing our son to play these games, he was very, um, disturbed and needed a lot of calming down. Very quickly, many of these games "disappeared" and were replaced with others that he may not have wanted so much. Tough Beans!

There are still hand held games that have disappeared for one reason or another. In fact, this week the boy is asking for a particular game. Doing so with such tenacity, I am quite certain the game has "disappeared" and is now gone permanently. I have heard others say that doing that kind of thing (taking the game and making it go away) is bad for our kid. I do not concurr with that statement. I believe that we did the right thing, and are teaching our son that if he behaves a certain way after playing a game like that it is more likely that the game itself is going to go away somewhere and not be found again.

I am reminded of one time, going to a game store and asking them about a certain type of game. We went there to see if we could sell the game through them or if we would make more getting rid of it ourselves. The game store employees told us they never had complaints about this game or the system. However, if one looked closely at the "look" the one young lady gave the other, you would know that both were fibbing in a BIG way. After that experience, albeit brief, we decided to watch what our son was playing and subsequent behaviors. At that point we monitored time, many times using an egg timer, to see what would happen.

Either it is the visuals in the games, or the music or both, and if some are played long enough, the kids get wired weird and will go off. One of the requirements I have prior to video game playing is doing 150 jumping jacks. If the boy wants to play the games that bad, he has to knock out 150 jumping jacks THEN he can play for an hour.

This might sound extreme, but there are some games that are just not a good fit and the kids should be monitored when playing them. Bear in mind, this is just our experience and what we think, not everyone will agree with this attitude.

Tuesday, March 23, 2010


Like it? I made it up myself, and I am chuffed because it sounds cool, "My son, he is "over-therapatized"." Whoosh, now doesn't that sound like some one is important? Really what it is; a kid who has seen way too much therapy in their young years.

That sounds awful. It really isn't. Therapy was a safe place for my son to learn a lot of things: speech for one, learning to tie his shoes and write (neither very well), and perception.

Didn't expect that one did you?

Perception... it is huge with our Aspie kids. My son's perception is, well, a little off. His idea of teasing is one sided. It is OK if he does it but he doesn't understand it if someone else does it. I tell him he has to take what he dishes out and not complain or whine about it. Harsh, no not really. Realistic? Yeah, I think so.

How many of us would LOVE to have our kids have gobs of friends and be popular. Cool right? Well, heck yeah. I love having my son's friend over. It is good for both of them, although it is better if they play outside...they can burn off energy and THEN play the video games. It is very rare that my son has a friend over; mostly, we don't know a lot of people... which sounds stupid as I grew up here, but we really don't have a lot of people that are on our wavelength.

Anyhow, the perception thing comes in where it is harder for an Aspie kid to figure out why someone is doing something...for example, boinking someone on the back of the head with a pencil. Why would someone do that? Dumb,but if you want someones is sort of effective, right? Similar to my son poking me in the shoulder. Oh man, that drives me bonkers. He gets attention, but not the kind he wants. By the time that tenth finger taps my shoulder I am not exactly pleasant (OK I am snarling). What I am trying to say, is once he understood that it annoyed me beyond belief his perception that it was OK to get my attention that way stopped.

I think that if perception is EXPLAINED in an appropriate, or understandable manner an Aspie can realize or at least be trained (see prior posts) to comprehend what others are feeling. A doc or therapist would tear me apart for that one, but I still contend that these kids can be TRAINED to behave and learn and function in society. As I tell my son, leave the stimming at the front door, then go out and do what you have to then work it through the day and bring it home and figure out what to do from there. Ergo, the therapy portion, just not too much therapy or it is like a over-soaked sponge, no more will get in.

PHEW- threw a lot at you this time right?

Dealing with "Nuthin' to do."

I hate vacation. I hate spring break. I don't like weekends.
Times when there is "Nuthin to do", the boy drives me nuts. It is so bad that last night on our walk we saw his math teacher and asked him to give our son more work so he wouldn't be bored stiff over vacation. Fortunately, the math teacher understood and was sympathetic enough to put some work up on a website for our son to work on this week.

Put it this way, by the end of the AM yesterday the boy had his paper written, with corrections, and better examples. He then taught a friend how to play Ghostbusters and then watched History Detectives, American Pickers and Pawn Stars. He was still bored. When we told him about the extra assignments in math, he almost danced into the dining room for dinner. He was GLAD to have something more to do.

Now that he has track practice today and tomorrow, we are good to go for the rest of the week. It is great to have him busy with stuff and not have time to think about things that need done or negative past history.

It took a day, but now the boy has plenty to do over the rest of the break!

Sunday, March 21, 2010

Eating healffy

My son once said, "Look at me I am strong and healffy." He was about 4 or 5 at the time. It sounded so cute, so naturally I put it in his baby book.

Eating healthy is a tough call. I just watched Jaime Oliver's new program Food Revolution (or Explosion, whatever). It is obvious that making changes in American cafeteria's is gonna be a real, well pain in the poop. For example, look at the food my son tells me he has eaten for lunch during the school day. Recently, I found out that my son was eating pizza daily, drinking milk and eating chips or some other junk food. No fruit (he told me the apples looked like they had been out for a while and was leery of them), not a veg to be had (pizza sauce is a veg?) and he is as plugged up as a clogged drain.

Tonight, I was informed that my son had been able to get cranberry juice in the cafeteria, but couldn't anymore, and was drinking Hawaiian Punch (OMG they still make that junk?). What happened to the cranberry juice? The fruit he had been having at home, grapes, clementines, apples, oranges, pears, kiwi; were strictly at home. Veg for him is green beans (canned or fresh whichever we can get)....or salad with french dressing again, at home. How can we be expected to get all the fruit and veg in him for the day by 7PM? Which moron came up with pizza sauce as a veg? Now that is just plain stupid. Or as we would say in this house, "taking stupid to a whole new level and beyond."

Eating healthy....what does that mean in an Aspie house?

Well, first of all we look at texture. What is it and how does it feel in his mouth? For example, he loves apple sauce. If I make it homemade, he will go through it faster than anything. I made several quarts (maybe gallons, I am not totally certain) of it this last fall and we are completely out, even of the frozen stuff I had made. My son's capacity for the things and textures he likes is amazing. We do cook meat here; although texturally fish sticks are more palatable for him, we will limit the number of sticks and INCREASE the fruit and veg and maybe leave off the bread entirely. He is getting the bread on the sticks, what does he need more bread for?

In foods class, my son made a chip and dip that had all the spices he could shove into it. Really, it wasn't bad, but it would have cleaned out any one's sinuses for at least a year. Making a change to TRY spicy foods was a huge deal for him, and maybe just maybe my son will make a difference, like Jamie, and get people to eat food that is good for them and not junk.

Another good example was this evening. WE hadn't eaten out in about 6+months. By choice, actually, we wanted to see how long we could go without eating outside the home and how much $$ we could save. We ate out, and frankly, my son and husband are better chefs than what we had tonight. We got home and were still hungry, so i grabbed the homemade granola, and my son a wholewheat bread snack with prunes, and my husband a high fiber brownie. NOW we are full...although our stomachs are still messed up from the restaurant food. After not having it for a while, our bodies are not used to it nor do we eat it often.

For me, it is exciting to see a show like Jamie's. Although, seeing it with the gen ed kids around him is frustrating. I wish we could see what other Aspie's are eating, and if the obesity rate, which is rumored to be VERY high, could be helped by Jamie and his current programing. Our Aspie kids are some of the most overweight of any kids in the country. Autistic children eat what they like, no matter if it is good for them or not. Making enormous alterations to their food choices, although problematic, and difficult, would be amazing to witness. It would have to come from the home and not the school.

In fact, I remember reading that Jamie's changes to the school food in England; the kids wouldn't eat it because they never had it before and their parents were bringing them the junk they wanted. Do you know why? Because it was easier to bring the little brats the food they were whining for than teaching them to eat something that was better for them. Our ped once told us that if we put it in front of our son long enough, he will eat it. We did, and he did. Oh he whined and moaned and then decided he liked it after all. Eventually, the bringing of the food must have stopped because the kids had to eat what they were given.

It is again a matter of manners and training, when we were kids did we have to eat stuff we didn't like? I did and if I didn't eat it I had it for breakfast the next AM. If I didn't eat it then, I went hungry until I did eat it. Putting food in front of our kids and showing them that they have to eat it is part of the process.

I got lucky, when I was a kid, my brother would take me out to eat and tell me if I didn't eat something I had never had before he would refuse to pay for my meal. I learned to eat whatever he told me I had to try (I have tried a lot of stuff believe me). So should our kids, so should my kid, and after seeing Jamie's show I will do my darnest to try. I challenge all of us to do it too.

Let's get off our overstuffed butts and eat better food, hit the fruit and veg and high fiber and DO a better job of showing our Asperger kids that eating junk is only gonna kill them in the long run. I will give it a shot.

To med or not to med, that is the question.

Ah the age old question of medding or not medding your kid.

You have NO idea what I am talking about right? That is OK, I will explain.

Medication is a real touchy issue. We struggled with it for years. I will tell you I refused to consider it until my son was over the age of 5, and even then I regarded it with trepidation and a lot of fear. When we started the med component, I wanted to make certain that it didn't do things to his liver, heart, stomach and all that. Not a big list at all right? The school was threatening me, telling me I HAD to do something with meds, or they would report me. Report me for what? Not wanting to experiment on my kid? Whatever.

We started with different things, and I came up with the vitamin component on my own. I wanted to be sure that if we were doing this thing at least his body would get appropriate vitamins and I didn't feel so bad about doing the med thing. The first several meds didn't work. At All. In fact, the teachers told us they did work, and were working, but then we told them he was on meds. At one point, when we changed docs we had to do a thing I call "baselining" that means taking him off of everything for 6 months. Putting it mildly, the teachers had a cow.... and I dreaded the afternoon phone calls and e-mails.

When we started the new med, we didn't tell ANYONE. It was a big secret, we didn't even tell my parents. We needed to KNOW if this was gonna work. I was terrified. Slowly we saw signs of progress at home. Very slowly, we noticed that he would play quietly in his room, or clean up his toys without being asked. Then the school called. He was able to work in the classroom and do the worksheets. He was participating in class. He did his homework with little less help.

We were taking him off the meds when he wasn't in school. That didn't work so well although the doc told us it would be fine. It didn't seem like he needed them when he was at home, so we sometimes would forget to give it to him.... he did that well without it so why do it. Mostly, this goes on during the summer, as there isn't as much stress with papers, homework and such.

Eventually, we told the school we opted for meds. We do other things too, like working out, eating right (little or no junk food) and vitamins. Everything in moderation, and maybe this will help you answer the age old question, "To med or not to med."

Saturday, March 20, 2010

Doing things we don't want to do.

Do you remember the interview with Jenny McCarthy and Larry King? The one where she mentioned collecting feces to be tested for her kid? I remember that interview and thought, "Oh I will never have to do that." Well, guess what? I have to do it.

Due to a side effect from one of our son's medications the doc wants a sample for Monday AM. As he put it, "The fresher the sample is the better. Be sure to check every visit to the bathroom." OH UGH! I am not the girl that does this kind of stuff. In fact I am so totally grossed out I feel like I want to be sick. I know, the practical side of me says we need to be worried the "plug" has been released and all the stuff with it, well lets just say it doesn't look so good.

This kind of stuff makes me feel really inadequate as a parent. I am not medically minded by any means and dealing with this just makes me ill. I am not a medical type. My family members laugh when they hear that I am doing some of this stuff; procedures that other people do. Not someone like me.

I am worried and scared. What if something is really wrong with my son and his intestines? what if there is more problems than we can deal with. What if....

Friday, March 19, 2010

This is weird....

We have had a lot on our plates this year. Making cuts to our schedule is really a big deal. Normally that doesn't happen and we are pretty tight on what gets done when and how we do it. Stopping stuff, it hit me tonight, we are stopping going to the gym. Just not going. Done. wow.

Lately it has been harder, maybe we are getting older, or the boy is just too big to push into the car. Whichever it is, part of me is suspicious of this kind of change... are we getting lazy? Frankly, we deserve to be lazy. Tonight was the first night I have watched "Dateline" in about 4 years. My son was in shock. I rarely ever watch something that isn't "educational" or "real". I was watching what I call "smut" TV. I wasn't really interested in the program, but I did like having my blanky and sitting. It was nice. He couldn't believe it when I didn't stop watching the program to go get into what he was doing. For what it was, it was "Mom Time."

On a similar note, this is the first spring break we have no plans. Nuthin', nada, zippo. We are staying home, doing a home project, getting a shower gift ready, working on his paper, and then we are good to go. Since we are living differently (OK we are as poor as church mice), it has been an adjustment to the boy. He is not used to not being able to go somewhere or do something. Last year we met Gwen Wright from the show History Detectives. This year, well, um...... we might go by Grandma's and drive her crazy.

I think with all of these changes we are in for a treat. It is really great that we are slowing the outside activities down. WE are cutting out things that we did need but don't need anymore. We are tired, of a lot of stuff, but mostly of just the constant moving.

Thinking a thought, writing things down, petting kittens; man,this is weird.

The views on flexibility.

This is a topic that came up with my Mom. She was discussing what was going on at school with me and how we were dealing with certain issues. Initially, she thought I had "gone off the bend" with teaching my son how to be flexible. She couldn't comprehend the necessity of being flexible about what happens outside the home. Her attitude was a typical one, "Really, what is the point?"

Well, there are several points. the first is that being flexible in a work environment is seen as a positive force of nature. People LIKE working with others who are seen as being able to do many things and able to work with almost everyone, even the more difficult people. Being able to handle jobs or tasks in a flexible way is a real plus in this market economy.

Being flexible doesn't mean being "best friends" with people. It means being able to adjust quickly to a possible hostile environment. Which would apply to school, or a job, depending on where you are in life. Teaching flexibility is another matter. It isn't just taught at school, it is done in the home. My husband and I are viewed as extremely flexible (not physically, it would kill us) but otherwise, we are pretty easy to deal with. There isn't much that can rattle us and we do work hard to keep things together and work through difficult areas.

There isn't much we won't discuss at home or with the school (much to their dismay). We are pretty tight on rules and what is done, like homework or teamwork, and when things need to happen. Believe it or not, I believe that being on some kind of sports team teaches our kids flexibility. You don't get to pick what you do, you get told by the coach and you had better do it or else. Being a kid on a team, learning how to act and what to do, it is all part of the training for life. Whether any of us like it or not, the same goes for being flexible.

Thursday, March 18, 2010

Understanding the details....

I know, 2 in one day, and it is hard enough to follow what we have already written. Bear with me, as I believe that this is kind of important.

This evening we were at an exercise class. This is a class we had developed with the local district to prep autistic kids for PE. In PE it can be over stimulating, and noisy, and distracting. IT appeared that a number of the kids were not capable of running the track without assistance. That was surprising to us. Without a class like this it could mean that autistic kids don't do very well in gym. We had been working with our son for a LONG time to get the ball rolling and the physical therapy and gym workouts were a longstanding part of that process.

To be honest, this class has pretty much taken off. We are on our third or fourth instructor (because of the format, burnout rate is high). I think this instructor is pretty good. During this class, it became apparent to us this evening that we work really hard with our son. Harder than most people would, as we are expecting that our son be able to live on his own, drive a car and keep himself in shape and work out daily problems at home and at a job.

In fact, it was rather concerning, when one of the students, told the instructor he wished to "bash the teacher's head in." In fact, this student meant, "I'm tired." I think it is pretty serious that as parents we allow our kids to "get away with" negative and inappropriate behavior and comments. How can we expect our kids to have a life, hold a job or go to college, when they get mad about having to run or work out in PE? Most people wouldn't tolerate comments like that and it is pretty serious when we are trying to help our kids and they are working to the lowest common denominator.

It scares me that the least of the expectations, like we have, are the most of the expectations for others. I wonder if we need to set the bar MUCH higher for our son. In fact, my husband and I discussed that this evening... the higher the bar is set the more likely our son will meet it. I think the lower bar sets aren't helping anyone... and the higher we old our kids with problems should be an example to everyone else.

Using the autism excuse is not a reason for bad behavior, it is a cop out.

Sensory thoughts and other things

Strange title, right?

I was thinking about this yesterday. I got about a dozen calls from my son about getting his head shaved for cancer. His team was doing it and he wanted to but needed permission from a parent. I was fine with it, but he didn't want my permission, he wanted his Dad's approval. Apparently, shaving your head for cancer is a Dad thing and not a Mom thing.

Strangely enough, the sensory feeling of a razor or shaver on my son's head has always induced a panic attack of sorts. The buzzing makes him a little nuts and gives him the creepy crawlies. Yesterday, a teammate shaved his head. REALLY shaved, to the scalp, you can see his head form and everything shaved. It looks pretty good. No panic attack or anything, he was excited that they gave him an extra T shirt that he promptly gave to me and asked me to wear it today.... got it on now and wore it when I took him to school.

I think although this shaved head thing is sensory; it is also about fitting in. Our son, knows that fitting in on the team is important. This is a harmless thing, for a good cause, and yet it was a bit panic inducing because he didn't make it clear to me that I had to come over there and watch him get his head shaved, nor did he want me there. Maybe he was afraid I would do it to (I have thought about it) or he just thought it was a guy thing and a girl shouldn't be there. Who knows. My husband was thrilled that our son wanted to shave his head, and he got to watch him do it, see the boy sit still and not make a sound during the process.

Although, it is right and appropriate for our kids to do their own thing, it is also good for them to fit in. To try, at least, to look like the other kids. Our son dresses like the other boys, he tries to wear his shirts, pants and shoes in the same fashion. Yeah, THAT is vanity (whatever), but, when you have things that could be held against you, making the effort to look like the general population does help. Even if it means you have to work harder with your team, even if you have insecurities bout your hair and scalp, hey it is an effort. The general kids know he is trying to fit in. It seems like they try to understand and they seem to be good about accepting our son for who he is.

It may seem strange, but the kids he has the most trouble with are the kids on the spectrum or with other issues (BD, or other undiagnosed things). Some of it may be jealousy on the other kids parts, most gens don't shy away from our son. Not that he is perfect or anything, but from what we hear he is generally pretty nice. AND he tries HARD to make friends and be polite. I know again with the manners thing, but it is important to be civil to everyone. We tell our son to be polite even if you don't like someone or have to stay away from them. Just get away and deal with the ensuing problems with a therapist later.

Anyhow, getting back to the sensory thing, sounds, loud noises, blowing fans, dogs barking, doorbells, phones, and all of that stuff can be sensory. Desensitizing is a good thing. It can be done, we did it with our son in a swimming class. He took it for years and then the noise of life stopped bothering him so much. He is still on full volume, but if we take him to a concert or a loud church service he is pretty good to go. Variant on your kid, maybe desensitizing is the way to go. Be sensitive to your issues at home, and leave it at the front door when you leave the house. That is what we are training our son to do, and maybe it will work and maybe not. We will have to see what happens.

Wednesday, March 17, 2010

Manners, manners, manners

Temple Grandin, "The other thing is, teach these kids manners. I was raised in the ‘50s and ‘60s, and manners were drilled into me. I see kids [on the spectrum] today that have no manners. That’s going to hurt them. You can’t punish a child who is acting out because of sensory overload. But it’s unacceptable to see kids throwing things and slapping people. I see kids with Asperger’s [a mild form of autism] who can’t hold a job because they are constantly late. Teach kids to use an alarm clock. This is common sense and sometimes we forget about common sense. Autism is used too much as an excuse for bad behavior."


This is totally on target and what we have been believing for years and here a wonderful Autism advocate SAYS IT! Perfect, now if people would listen and believe it that would be even better.

It is NOT up to the schools to teach your kids manners, or to be on time or to learn to pace themselves, it is UP TO THE PARENTS. We have to show them a good example, and teach it to our kids and then THEY can practice while in school and learn to do it right on the school schedule. THEN learn to practice at home and learn to do it right on the job.

SO many kids with any disability are brats. they are bad tempered and just plain mean. I will never forget the one evening at speech therapy, there was a child whose Mom said, "Go ahead, take 2 one for each hand" immediately after a tantrum that the therapist said that he could only have one piece of candy after their session. This kid was smug and the Mom let the little monster get away with it.

Yeah it is easier to let the kids be little farts. It would save me a TON of arguments about how my son is not going to behave a certain way. I will tell you here and now, my son is a polite child. I have been told that he is polite by almost everyone, even the police officers at his school. My son has been TRAINED to behave himself. Others need to do it too! This is important because using a disability as an excuse for dismal behavior is completely unacceptable.

If your kid lies, or is cruel to others, train them otherwise. TEACH your kids not to be like that. There are positive Christian examples you can use. We used Vegie Tales when our son was younger, and let me tell you our son is a GOOD KID.

THANK YOU TEMPLE!! Your thoughts are amazing and I am so impressed with this quote- again I LOVE IT!

Tuesday, March 16, 2010

Free Time?

Tonight was the last social skills class. If you don't know what that is it is a class for boys that meets weekly for a period of time to learn how to act "normally". Pretty much, our son has gotten out of it all he can; he either chooses to do it or not. Most of the time not. Many times the boys sound "scripted", which I kind of don't like, it takes away the personality of the thing. That bothers me.

I sound kind of negative about this social skills class stuff. I think it is good for kids to meet each other and hang out, I think it is bad because once the class is over, unless the parents make pals it is pretty much it. Our kids won't call each other and if the parents can't hit it off, well the story is pretty much played out.

Fortunately, we have some friends we met that way. They are great and we have a lot of fun together. It is really cool. Our lives are brighter, and more colorful with the friends in this group. We care about each other and it is great to know what is going on and if everyone is OK and that we can have each others backs if necessary.

Anyway, this free time thing, it will be different for us. Since we aren't rejoining our gym (they tripled the cost) and are going to start up walking for 30 min an evening, it seems like we will have a little more time to get out and around our neighborhood. Maybe it sounds goofy, but I am actually looking forward to not having to go to the gym and take 2 hours out of our evening 3 nights or more a week. We can decide again in the fall if we want to rejoin, but the place we were going basically kicked us to the curb.

It isn't like the gym is a bad place; it isn't, but we are tired. Tired of driving far away, tired of going all the time, tired of just being tired. That kind of thing. It takes a lot out of you when you know things need to be done and it is just really exhausting to work around so many schedules. A lot of times we will take the summer off from therapy and such, just to get a break in. I used to just take a week. When we moved, I changed it to a month. This time it might be longer. It depends on how things are going.

Some of the not so fun....dealing with stomachs

Ok, this is NOT the fun part. It isn't. Our son has a dairy issue. from what we can tell, not all dairy, just the uncooked stuff. Drinking a lot of milk will plug him up and if he doesn't listen or decides not to tell it just gets worse. He doesn't want me to worry but then when he doesn't tell, I end up having to do things that I find really icky. Besides going to the doctor that is.

Recently, he got plugged, really plugged, so plugged he missed practice and was in the bathroom for an hour trying to go at school plugged. this is obviously not a good thing. When we got him home we did what we were told to do. It sort of worked, although I ended up cleaning the bathroom after his time in it.

I get worried when his stomach looks bloated, and the thing is, he is too young to see a reg gastro and too old for pediatric about this. It is very difficult, becuase the ped will sent us to a urologist, and they did their show and can't help further. We are going to try to see a gastro this week if we can, but because of his size and age I don't know if we will get in. I know that TACA has some stuff about this and pooping, I don't disagree with them, however, when the kid is out at school and purchasing food for himself he has to think about his choices.

Ours has made the wrong ones and now we have a lot more for him to go through. Teaching independence means teaching the right choices, and if the kids make the wrong ones it us UP to the parents to determine that and instruct to the right way of doing things. This AM I had to point out to my son, that drinking a chocolate milk and eating pizza daily is what plugged him up. He needs to drink juice with pizza and pick something else to eat as well, either a salad or fruit. He didn't take it well and was unhappy about his stomach pains.
Ergo another trip to a doctor.

Monday, March 15, 2010

Stuff to do- we have lists.

It is different when your kid needs stuff to do. He doesn't have his buddies call, their Mom's do, to organize activities and decided the whens and wheres. To me, it feels weird. I always had my friends calling or I called them and we went out and did whatever.

My son doesn't have that experience. If he goes to the movies, it is with a group organized from the school on a Friday night. If he talks to people at lunch, it is with a teacher who keeps the conversation going. He wants to do the social stuff, but doesn't know what to say to peers. He has his interests; but most kids aren't into the stuff he likes.

His abilities are sometimes negligible. I tell people, if you watch the barometric pressure, you can tell when the kids will be wacky. It changes so much here that during the season changes we are constantly watching to see what is going on with the boy. Now this makes him sound like a regular nut job. He isn't. He is really a nice kid who needs to have a maturity level that is higher than what he currently has.

I have heard that he will be better as time goes on. There are people who tell us that he reminds them of Seniors who are doing well and have friends and do stuff with them. I hope so. I hope for my son that he will take off and fly and do well. He has the foundation, we have tried our best to help him learn the stuff.

A big decision was made a week ago though, we are pulling him from social skills classes. Frankly, he started them late, he has learned it all and chooses not to use the skills he has learned. We can't force him to do it, so why continue the classes? It doesn't make good sense. This choice may be changed at a later time, but right now we need a break. There is too much with school, sports, homework, and if he does go to an activity or church, we are overloaded. Extra classes on top of all that is too much. Most of the time we make him work ahead on weekends, drives at least one of his teachers nuts, because we aren't home to do the work.

I wonder if Jenny McCarthy struggles with the same things? Her son is cured of his issues, and then treating the wrong, I know I would be exhausted and frustrated all at once.

Anyhow, we are going to be going through changes this summer and fall, hopefully things change, but if they don't they don't. We will have to see what happens.

Sunday, March 14, 2010

Analyzing Romeo and Juliet- A Teen Aspie's view

This is a new experience, we forgot to set our clocks forward, so we missed church. We decided to go over our son's paper for Romeo and Juliet that is due tomorrow. If you haven't read Shakespeare in a long time, going back and explaining the details to your kid makes for an, "entertaining" time. In fact, it is surprising to me that my son has chosen a minor barely mentioned character as the foil in this story.

He has decided that it is all Rosaline's fault that Romeo and Juliet die. She toyed with Romeo's feeling and played him for a fool. From the notes from his class and what I have read, it appears that he came up with this all on his own. I certainly never would have influenced him to pick Rosaline. I mean, she really has nothing to do with the entire story.

It goes to show that Aspie's think in their own way. This minor character, to my son, is a major problem. She was a tease, a mean person, and acted one way but said differently. No wonder he thinks she is a bad person. He sees behavior like that all of the time. His entire life is spent wondering why people act one way and say something else. He got a note from some girls in his class, telling him they hated him and then signed it "Love". I mean he gets Romeo, and really understands the bad feelings part of the play.

For me, going back and reminding myself that my son needs to understand the story from his teen viewpoint is really a challenge. I see so many different things than I did the first time I read that story. In fact, I believe I may have blamed Mercurio, because he was harassing Romeo continually. But my son sees this Rosaline as the really negative character. She was the one that started the problem and Romeo wouldn't have looked at Juliet if Rosaline had been decent to him.

I think my son is analyzing this drama from a very different place. He has dealt with personal pain; of being different, of not liking how things are (his autism), and not knowing what to do about it. Working with him to help him verbalize what the story could be, how dangerous and mean it is for people to play with others feelings makes it harder for me to stay neutral. I want to take the hurt and humiliation he feels daily and fling it away. I can't. In the long term, it wouldn't be helpful for him, and it wouldn't do me any good either.

Educational Evals- A parent's view of the first time

Many times, ed evals are done at a younger age. My son had his first one at 3 1/2. If there are things going on or a teacher is complaining they may come later. This is OUR first experience with an educational evaluation. It was not pleasant, I will admit that doing this as a solo parent was painful; emotionally and mentally. If you can get someone to go with you, DO.
Again this was our FIRST EXPERIENCE: it was many years ago and many things about the process has changed....still it is worth reading.

"Evaluations suck. They do; they suck, blow or whatever vernacular you can use…. that is it in a nutshell. Our first ever evaluation was done at a school.
The old bat (she was really), oops, I mean teacher, that was in charge of the evaluation chastised me for everything under the sun. She got after me about using my son's nickname, not doing potty training sooner and allowing him to eat baby food and rot his teeth. IT got better from there.

There is another parent here, her son supposedly lisps and she wants free day care. My baby can't talk and she is fussed about a supposed lisp?? Some people should just get smacked up one side and down the other. For some strange reason, I have NEVER forgotten that Mom and I look at her with disgust every time I see her. She sickens me. I think she knows it too, she is super nice to my son every time she sees him and knows I can see through her…. The nerve of some people’s children; it amazes me that people my age weren’t brought up better. This sense of overall entitlement is beyond anything.

Anyhow, this school evaluation…. the initial testing went downhill from the start.

This first school evaluation went on for hours and hours, and hours. I really don't recall HOW long we were there (does eternity sound about right?). They checked through everything, and asked me why my sister-in-law in AZ was trying to help me get through all this (emotionally and mentally I was wiped out for other reasons). I will admit to not being in good shape (mentally or physically) for this type of ordeal. Essentially, I was newly separated, unemployed, taking care of my parents (OK trying to…they were stubborn). Just not a good place and trying to find out where a good place is for myself and my son.

Anyhow, on goes the first evaluation at the local school.

We went, my son and I, and I don't really remember how we got there or what happened after we arrived. From what I recall, I believe I drove myself there, although the evaluation was less than a block away from where we were living. Good thing I did drive, I don't believe I could have managed the walk home although driving about a block, it was completely debatable. After the evaluation I am pretty certain that I barely managed to drive home....I was shell shocked to say the least. If I remember correctly, my son and I came home, and we both crawled into bed....not sure if we had dinner or not or if we were cognizant enough to discuss the overall evaluation and coming treatment options with my parents.

In any case, at the first school evaluation the teachers were disrespectful at best. My favorite question was, "What did you do to him to make him this way?". As soon as we were in the door of the school the questions about home issues started. I was asked some pretty bad things, and asked why my son would not respond to them (DUH, he doesn't know you).

Then another old hag, OOP's I mean teacher, asked me why we didn't call him by his first name instead of a nickname? WHO CARES??? We had always used his nickname (given to him by his aunt, my sister) and had done so for years. Old witch, some teachers should just retire (at 20). They just do not have the ability to help or teach when they loose their compassion. Her line was, "If they don't use his name how do they expect him to know it?" Um, hello moron, children have nicknames, and our son knew his....what an old bat.

Anyway, at the school, during the evaluation process multiple forms had to be filled out. The forms, my God the forms; I filled out SO many blasted forms that day. After the forms and the questions they, the teachers and other evaluators, took a break (Thank God they finally left the room....I needed to breathe and wanted to cry). For an extremely uncomfortable twenty minutes, the other mom, her son, my son and I were left in this room. The other mom (the parent of the kid with a supposed lisp) couldn't look me in the eye. She was ashamed, I hope, of trying to get free services for a child who lisped when my little boy was out of control and couldn't speak. I wanted to say something to her, but I was so devastated all I could do was stand there and hold my son and try not to cry my eyes out. I kept shoving my son's head on my shoulder and just pacing around with him in my arms. I wanted to run out of that room and tell the teachers and evaluators to shove it, but I didn't. I stuck it out; maybe from morbid curiosity, or just the fact that, "My Daddy didn't raise no coward"; I really wanted to know what those evaluators were going to say. Unfortunately, they said nothing substantial when they son and I grabbed his toy bus, and I, carrying him, walked very quickly out of that classroom praying NEVER to return."

Saturday, March 13, 2010

Living on the edge: Life as a Parent of an Autistic Child

So yeah, ours is something, to briefly introduce ourselves we will start here. Some of this is from FB, some from a book I have been writing, all of it is real and honest to God a gift for us to learn something.

This is about being the parent of a highly functioning autistic child. Our son is different than most children on the spectrum. Our view point is different as we didn't experience things that parents whose children did go through the general education system did.
Our son is better in some areas, worse in others. Best of all, he looks like your kid. He does, really. He is a bright, intelligent and very lovable little boy. We are fortunate. We aren't saying that there aren't problems or issues or things that really suck. What we are saying is that we are very happy to have a boy that we hope to help him succeed and do well and be independent when the time is right.

I hope you are able to read, understand and comprehend the parental views in this story. Most of the experiences are our own, some we have heard from others and some we agree with and some we don't. This is a view that many don't see, won't see and if they did they would never comprehend what is going on here in our home. Maybe a story like this will give them the idea that our story is different and maybe just a little more compassion and understanding will be imparted in the world.

I believe this introduction to this story says it all.

"I am just a mom, my husband just a dad. Who would have thought that two ordinary Joes like us would have gotten picked? I mean really, who and what are they that they get chosen to have a child on the autism spectrum?

As an infant, I knew our son was special. As a tiny baby he was only happy when he was hugged tightly (known as deep pressure) all the time. As he grew, he still wanted the hugs but would take my face in his hands and try to direct me with his eyes. What we did I called "eye reading" as he rarely spoke, except to yell and his behavior in public was, well difficult? At one point I was the only person that was able to communicate with him. We ended up using our own made up versions of sign language, eye contact, and quasi-verbal communications.

This story is about all of that fun stuff. The "OMG what am I going to do about this kid", or "How to get through evaluations and survive what a thoughtless 22 year old teacher might say to hurt your feelings". AND it is about 2 “ordinary Joe” parents who are giving it their best shot and just trying to make it all work.

I hope you get something out of this. If not, sorry, maybe you didn't have enough for me to put in, or you are just not ready for the reality of hearing about child who is on the autism spectrum. We aren’t writing this to make others happy, just to understand our son and ourselves.

Don't worry, you will understand eventually, and you will get there. Just read the facts a few times and we will work on you from there.

Seriously though, we live, dream, hope and pray just like everyone else."

Maybe you will read this blog, or maybe reject it, either is a story that someone needs to tell. Why not me and my family?

It is us three, and three cats, we live like everyone else does. Maybe a little more quietly, the phones don't ring that often. Friends aren't here much. In fact, we really didn't have places to go or friends to hang out with until a couple of years ago. Our lives are really mundane. No flair, excitement or camera flashes.

What we do have is a lot of school meetings, lots of information about what is going on at school, things about our kid that sometimes we wish we didn't know. Recently, we were informed that a young lady had accused him of harassment. A teacher aide told our son he did it and he concurred, later he told me he assumed that the teachers aide knew something he didn't. We checked his phone records, he never had called the girl in question. He wasn't even sure who she was....the teacher aide is no longer allowed to speak to our son without someone else present. Can you blame us? Is it hard to realize that a child on the autism spectrum will believe a person in authority over what the facts are? This aide is a person that should not be allowed the privilege of working with our kids. Unfortunately, tenure does not protect the good teachers, just the ones that cannot get a classroom anywhere else.

Pervasive culture shows that kids like ours are seen as "Forrest Gump". To us that is NOT a compliment. It is a painful, cruel allegory that diminishes the intelligence of the entire group of kids that are smart, able to do things and be in activities outside of the regular school day. Our son gets good grades, is in sports and is able to function most of the time in a regular classroom.

It goes with out saying that we work hard with him. He is doing his homework, we are the tutors. My husband and I split up the classes, he does the science and math, I do the language arts and history. It is a lot of hard work. We read books that we read when we were in high school, and we have to remember what we thought of them back then and not through the life experiences that we have had. Reviewing high school and explaining it to a 15 year old Asperger's boy is a new experience every day.

After reading Romeo and Juliet, try explaining girls to an Aspie. Talk about foreign creatures; girls are a nice but weird things....and oddly enough the signals these creatures send off are enough to confuse a parent let alone a boy who has trouble socially. The most recent girl thing, the harassment complaint was completely unnerving to our son. He didn't know what to do with it. He was embarrassed that he didn't even know this girl and yet had to explain that he would never call her because he didn't think she was pretty enough.

Living with a boy on the Autism Spectrum is never dull, we are constantly in a state of flux. Our lives are on the go, we aren't just sitting there....we have schedules, meets, practices and homework. There are days when my husband and I feel like we are back in high school, and barely maintaining that.

No matter what other people say, doctors, or lawyers or teachers, until you live it day in and day out you don't know jack about it and it might be a better thing for you to just put up and shut up. I often ask people to come and stay to see what they would do with our son and how they would handle problems. Regularly they turn us down....we knew they would. Living in this autism world is not the simple thing that most think it should be. Until they do, treating it and helping the patient through a day to day existence should not be part of the treatment plan. coming up with generic stupid terms is no way to solve the problem, it makes it worse instead of better for all concerned.

Look at the furor over the latest change by the American Psychiatric Association. Dumb, dumb, dumb. These docs did not use the brains they were given and instead have made it more difficult for services to be determined. Thankfully, there are famous people, like Jenny McCarthy, and Jim Carey who are dealing with a child who had issues,and are bringing our issues out into the open. How lucky can we get? But look at her situation, it sounds like a misdiagnosis and the poor woman had to deal with that pain and then the pain of the public, and if he is cured of the other the joy behind that. Holy cow, how much can one person take?

Sadly, when I get yelled at by my son, daily for weeks, and am told to "Be patient with your child." All I want to do is tell that person to "Stuff it. You come try and then tell me what to do." Most won't come try, as I mentioned before, and their reactions are what you are looking for....what will they say when you come in to a room and decide you need a break. Fine, do whatever, just tell my kid not to yell at me anymore. I can't stand it.
Sometimes things change, then sometimes they don't it just depends on your kid, the day and what happened at school.

Really, it is all a matter of working things out. Working out the idiot teacher's aides, the stupid little girls and the other social factors that we have to deal with. Dealing with other parents, trying to make friends as adults and do what we need to do to just get through a typical day. Our days are like no other and although brief, I believe this story has given you an idea of what we get to do regularly. Lucky us.
What started this blog was a recent IEP (Independent Education Program). For those of you that don't speak acronym that means that there was a meeting at my child's school that was horrible. Let's say beyond horrible. Let's say totally sucked.

Anyway, after the school meeting we were talking to one of our child's docs about writing a book or just doing something to vent and it just seemed like talking from a parents point of view for a kid on the Autism spectrum really needed to get out there. There is a lot to be said, from just the viewpoint of what do to, what may work, what may not and how to deal with plain ole ignorance if someone is just plain thoughtless.

From looking at Jenny McCarthy, and the pain of what she has gone through with her son. What sounds like a tragic misdiagnosis to seeing her dealing with the public. My heart just spoke and decided that talking about this from our, parents, viewpoint needed to be done. We are hoping that with our experiences, Jenny McCarthy, and others will be able to help the general community in understanding what living on the edge, Aspie style is like.
Join us in our experiences and if you have a comment, or just want to talk about issues, we may be up for that too. For right now lets just get on the beast and ride and see how it goes.

Our ride has been pretty wild, we didn't have a diagnosis, then we did then we didn't know we did then the doc didn't know we didn't know. Yeah, nuts right? Well that is what happens when you don't know what to ask, how to ask it or why. It comes from being overwhelmed and under informed or just not knowing about the right things to ask or say. It happens.

Now this is not the place where we will judge anyone for that. Good grief, going through a diagnosis is painful enough, and seeing what needs to be done is even more icky. From the group that talks poop to the meds you could get reviled for, no one at this place is out to judge anyone. It is not our call. It is all here, the pain the OMG what do I do now, the goodness that doc is a moron. You will read, digest and learn.... best of all, it is gonna be a WILD RIDE baby!