How My Story of Lupus Began.

When I was 15, I was diagnosed with Lupus. Until then, I was a normal 15 year old. I went to school, hung out with my friends, was probably more than a little boy crazy (ask my dad). Then suddenly, I was sleeping 18 - 20 hours a day. But maybe I should back up a step.

I have always gotten sick easily. Not as easily as now, but if there were germs to be had, I would find them. My body's personal fave in the winter was strep. Gotta love a nice strep throat. Fever, don't want to eat, feeling miserable, sometimes a nice rash. But you get to drink Gatorade and eat ice cream if its handy. Now that year, starting Nov 1990, I'd been sick around Thanksgiving. If it was holiday, you can bet I was sick, almost always, or getting over a bug or something like that. About two weeks later I started not feeling well again, and I know I should tell my mom and go back to the doc, but I am tired of being sick, and I don't want to go back to the doc.

I loved my doc, Dr. Marcus Welby. (Ok he looked NOTHING like that but he was caring like that and wanted what was best for you) But I had JUST gotten over the last bug and was just catching up and getting back and Christmas break was only 2 weeks away. I was going to fight it out. (NOTE to EVERYONE ELSE: BAD IDEA) I fought it out another week or so, until had a bad fever and couldn't anymore and finally told my mom I needed to go back to the doc. She was mad I hadn't told her sooner. She got me an appointment but Dr. Welby wasn't in, he was on vacay, but his associate Dr. HeadUpHisButt (I debated between Dr HeadUpHisButt and Dr HoleInTheHead, then I found this cool pic below so it was settled).

We go to the appointment. Dr. HeadUpHisButt checks me out and tells my mom it is just my allergies. Doesn't do anything else. Hands me some allergy pills and sends me on my way. I hate the way some doctors won't talk to you, he told my mom it was just my allergy, not me. Dr. Welby would have talked to me. Another point against Dr. HeadUpHisButt. Ok, so I go home. I feel rotten. I take the amazing allergy pills, I already had at home, which do not work. But now it is Christmas break and I want to be ok for Christmas, but I really am not, my body aches and my throat is sore. It is lucky my whole family didn't get what I had my bug, I really do not remember if anyone else got sick that year from it or not. I was too sick to remember much else.

So New Years 1991 dawns. Dr Welby is back! YEAH!! My mom calls and makes and appointment because I cannot swallow. I am crying because it hurts to drink anything. Yes, I was a mess. Dr. Welby takes one look and my face, one peek at my throat and leaves the room. My mom and I look at each other and shrug. We then hear a knock down the hallway and Dr Welby asks Dr. HeadUpHisButt if he can talk to him. He then begins to berate him in the hallway ABOUT ME, asking him why he didn't do a strep culture on my throat when I was here with my history of strep, and send me home with just allergy pills with my history. My mom and I were flabbergasted. You had to know Dr. Welby. His booming voice was just well I didn't believe it. I was happy he took the other doctor in check but I still didn't believe it.

Unfortunately for me, while I was now on antibiotics, fairly strong ones, but I had had a strep infection for probably going on for not quite a month. Partial my own fault for not wanting to miss more school, mostly Dr. HeadUpHisButt's fault for not doing a thorough exam and recognizing a strep infection when he saw one. I went back to school after Christmas break but I wasn't feeling well and I kept missing days, 2 or 3 a week. I was aching and tired. Finally end of January, 1991, I went out and didn't go back for the rest for the rest of the school year. Lupus has been triggered in my life.

Remembering Pops - Memorial Day 2011

This and every Memorial Day, I remember my Grandpop. He served in WWII. He was injured and sat in a hospital in Germany for a long time, not knowing if he would survive. He lost a lot friends, both from home and ones he made abroad. We honor those that serve in our Armed Forces. It is because of YOU that we can live safely in our homes. Thank You and God Bless YOU!

Louis Vincent Ambrose

April 8, 1920 - February 9, 2006

Picture of the Week - Mother's Day Gift

This Sunday's Pic of the Week

is my son's wonderful choice of gift

for me for Mother's Day

(which I know was several weeks ago)

Isn't she adorable? She came with the name smooches!

Which I thought was too cute to change.

My hubby gagged! LOL

Hope everyone had a great day.

Feel free to leave a comment or email me teenahope@gmail.com

HistoryBoy's Insomnia Keeping Me Awake.

If you are my friend on FaceBook, you probably heard the shortened version of this tale.

On Thursday night, HistoryBoy went to bed at his normal bed time, 9 pm. He usually gets into bed around 8:30 and reads for about 1/2 hours but he had been poking around so it was right into bed for him. He fell asleep fairly quickly, he did ask daddy to read him one story before falling asleep but that was ok.

Well around 2 am, I hear this voice. "Mom, Mommy, Mom, can you hear me?" Bleary eyed I walk to him. He is WIDE awake. I put on some music to soothe him and rub his back in the hopes that he wil fall back to sleep as he sits and chatters to me and doesn't want me to leave. He keeps telling me he is not tired, can't he just stay awake, he will do whatever I want. I tell him ok, "Why don't you clean your room for me?" "Ok, Mommy." WOW. He really doesn't want to go back to bed.

I leave him to it for a while, but apparently cleaning his room is NOT a quiet occupation. He bangs around a bit and ends up waking his dad which wouldn't be a big deal on a weekend, but Daddy has a 2 hr commute to work so he has to get his rest. So I go back to HistoryBoy. "Hey Sweetie, why don't you sit down and read for a while." I look around for something soothing and see his children's bible and give it to him. He lies back in bed and sings quietly to himself and begins reading. I head back to bed... again.

It is not 4 am and I hear a voice "Mom, Mommy, Can you hear me?" HistoryBoy is trying to call me softly as he can and not wake his Dad. I stumble go back to him. "Oh, Mommy, I am so glad you came back." He hugs me and gives me a big hug. "Can we work on my homework now?" (HistoryBoy does his homework in the morning before school most mornings because with his ADHD it is just easier. That will not always be the case but for now...) "Uh, now? Ok, if you want to, I will do my best if you need help" He sets to work and I help when he needs it.

Somewhere around 5am I am so bleary eyed that the paper I am staring at makes no sense and this is 4th grade work so I know I am just too tired, so I stand up and say "HistoryBoy I have to go back to bed, I am sorry you can't sleep any more. You are being good, but I can't stay awake any longer. I went and got him a yogurt out of the fridge and a glass of juice and told him he to try to sleep or at least rest.

I climb back into my bed and hear the lilting music of sesame street on the living room TV. What else do you expect to be on this early in the morning? I drift off, after a while I hear transformers. I don't care, it isn't loud enough to keep me awake now.

Balancing HistoryBoy's Needs and Mine

The other day, in "Pushing Myself Too Far, " I talked about how when I pushed myself how exhausted I get and how long it takes for me to recoup. Here it is Day 5 and I am still trying to recoup. I haven't been able to get out of bed to do more than a load of laundry. I had to have someone drive my son to school for me yesterday because I just couldn't focus well enough to drive.

HistoryBoy for all of his problems is good when I do not feel well. He will play quietly, read a book, play a video game, or watch tv and basically not get into trouble so I can rest and has done so as long as I can remember. All I have to say is mommy isn't feeling well and needs your help. Can you be good while I take nap? I used to lock my bedroom door when he was smaller to make sure he couldn't get into trouble but now he is old enough to be able to fend for himself for basics. He can get juice boxes and go-gurts out of the fridge or whatever other snacks he can find. He knows what he is allowed to eat and is good about it too.

My problems is that he will give up his fun stuff if I don't feel well. It is one thing for me to stay home from a party because I am not up to it or to not go to the movies, but he should go and enjoy these times with his family and friends if he is able. But if given a choice he will choose to stay home with me. He doesn't want to go have fun if I have to stay home in bed and rest. My husband tries to convince him to go to the store to get dog food with him, (PetSmart is one of HistoryBoy fave places, he can share all his animal knowledge with unsuspecting customers and employees) or go to a movie that he really wants to see. HistoryBoy's first question is, "Is mommy going?" So sometimes I push myself more than I should because I know HistoryBoy will not go unless I do and I know he needs to get out more. He needs the socialization and forcing him to go without me, will only make him either meltdown, or worry the whole time, or a combination of the two.

I try to make HistoryBoy remember that he is the child and I am the mom and I have daddy to take care of me. He doesn't need to worry so much. But that is what an Asperger's child does, worry, worry, worry. And it is my job as his mom to figure out how to ease it, and if pushing myself a little every once in a while, even if it means a few more days in bed once in a while, I have to do it for him. He deserves the best I can give him.

Our Puppy ~ Christmas 2009

We decided to get a puppy. We decided to adopt a puppy from a shelter. We discussed what kind we wanted, and decided on a lab or lab/mix. I love labs and that is what I have always owned and they are great with kids and we needed a dog that would not be timid or overwhelmed by our HistoryBoy.

We went to our local shelter we found the cutest puppy named Maddie, a little black lab mix, curled up in a little ball. She was perfect! A little hyper, but she was only approx. 8 months old, so what did we expect. She was loving, and a great guard dog, she has an AWESOME bark. No one got near me or HistoryBoy. Although I think she would have run if things got hairy, she was a little timid when someone reached for her!

Now, since she was only 8 months old, we expected her to get bigger. We took her to the vet for a check up and they suggested she might be greyhound and not just lab, she could get a bit bigger. (Uh oh) As you can see by the pic taken about a month after we got her, she isn't full grown but she can almost stretch from one side of my full bed to the other. Yeah, not so little dog. Still love her, but not so little.

It has been suggested to us that while our lovely Madison, looks like a Black Lab, in the face and coat, her build is definitely something else, and I quite agree. If you could see her run or jump, you might think she is part horse or jack rabbit, which definitively puts greyhound into the mix. It's funny even now when she is lying now she will tuck her legs under her sometimes ans she will look like that small puppy until she unfurls those legs and you realize I must own a mini-black horse or something.

In all honesty, she is a great dog, and a great choice of dog for HistoryBoy. She has the energy to run with him when his hyperactivity has taken hold and the size to keep him contained. But on that same note, when he is in school and I am in bed lying down she is content to lie by my bed, or sometimes on the bed by my feet. She is the perfect dog for our family. I wanted a companion for myself during the day when I was alone and for HistoryBoy to interact with. And we couldn't have gotten any better.

Pushing Myself Too Far

I usually take it easy. Very easy. I know I can't do things two days in a row. But I said I'll push myself a little. Now Day 3, I am barely out of bed. I think I need to boil my body in a HOT HOT bath and hope it helps. Meds didn't seem to help again much today.

I overdid it this weekend and I feel rotten but I wanted to see be able to do things like a "normal" person. Go to a movie on Friday, hang out with friends on Saturday and go to a play on Sunday. My body is crying now and I know I should have NOT gone to the movie but my hubby and son really wanted to go and I gave in. Now it will take me this whole week to recoup and I know it. I need to find a way to enjoy life and not fall apart.

This all started because HistoryBoy had asked to go to the movies, I said I wasn't sure, I would have to see how I was feeling.. He says to me "I wish you were healthier so we could do more fun things." He wasn't trying to be mean, to him it was a logical, Asperger answer. Truthful and logical and just wanting to spend "fun" time with his mom. So I sent my son off to school and called my hubby at work and told him I was going to rest all day so we could go to the movies Friday night. When I already knew I had plans for Sat night and Sun Afternoon. But it was a fun weekend. I just wish my body handled them better.

I'd Rather Bite My Arm Off

It is one of those day. Maybe you have had them. I know HistoryBoy has them. Everything seems fine and then one little thing goes wrong. He does something he isn't supposed to, and needs to apologize. Or he wants something I have and I tell him he needs to ask for it instead of grabbing for it. In school, he tells the aid he has to go to the bathroom, she tell him he has to raise his hand to ask the teacher but he won't.

On these occasions, I have found he would rather bite off his nose to spite his face. One day I told him if he didn't apologize to his friend, we were going home and he couldn't play anymore. He said fine, and then cried all the way home because he had to go home. I told him all he had to do way apologize to his friend at the time. He asked could he go back and play and apologize. I told him it was too late now we were already home but to remember that next time.

If I have a book, or a video in my hand that HistoryBoy want to see and he grabs for it rather than asking for it. I put it out of his reach (that is only going to work so much longer) and make him ask for it. Sometimes this works, a lot of times I get the Fine I didn't want it anyway. I try to explain to him that I am not saying he can't see it. But he just has to ask, but again he would rather not ask.

In school, each child is allowed a bathroom break in the morning and afternoon. You can ask the teacher's aide to go to the bathroom the first time. But, apparently HistoryBoy needed a second trip but had to ask permission from the head teacher. He asked the aide and she told him he had to aide the teacher. He kept saying he had to go bad. He wouldn't raise his hand. He sat their. Biting his lip and fist, rather than raising his hand and asking the question.

Maybe he is embarrassed, I don' t know. But these type of things happen fairly often. He doesn't like being confronted, I do not know if that is the right word. I know that it has, in part, to do with his lack of social skills and his inability to know what to do in a social setting, but I do not know what to do to help since he would rather avoid the situation altogether than confront it. My son would stay at home inside all day if he could and he is only 10! If you have any advice I am open to suggestion! Thanks!

Feel free to leave a comment or email me at teenahope@gmail.com

We Wonder Why Our Kids Can't Sit Still

I have read many blogs disparaging Dora. Believe me I am not in love with the tyke too much either but for an entirely different reason. Now when I was a kid, (uh oh, did I just say that, am I becoming my mom?) we had Sesame Street, Electric Company, 3,2,1 Contact for the learning crowd, Tom & Jerry and at the end of my toon years the Disney afternoon Ducktales etc. None of these shows encourages me to yell at my television as loud as I could or to get out of my sit and wiggle. I was supposed to sit and learn or sit and watch and laugh. I wasn't called a couch potato for nothing. After I was done watching my afternoon tv, I was supposed to go outside to play and then come in, have dinner and do my homework. Sound familiar?

Ok, now. My son watched Barney (cringe) and Blues Clues, Dora, Diego, The Wiggles. I am pretty sure there is one or two I forgot. Thankfully Thomas was a stationary show as that was his favorite and on permanent repeat (ha ha ha STATIONary show get it) I know I am hysterical. Anyway... these shows tell our children to stand up and yell at the TV. "Have you seen my dog Blue?" "When you see a rock coming say 'Salta!'" "No LOUDER!" Come on, why do our children call out in class? If someone asks a question they have been yelling it back since they could answer the TV? We've been teaching them to do it. DOH! I think somebody made a mistake somewhere.

Also, the Wiggles and Barney, and Lazy Town, all that moving, jumping and dancing, no one EVER sits still. How can we expect a child to sit still when they have never sat still through a TV program.

I am not saying this shows don't serve a purpose. Somewhere someone's Spanish teacher asked their class, "Does anyone know the the Spanish word for jump?" And a student leaped out of their seat and shouted SALTA!!! Thanks Dora!

New Sunday Idea - Picture of the Week - Beautiful Rainbow

From now on, on Sundays, instead of blogging

I am going to post a Picture of the Week

This weeks pic comes after so many days of rain...

A Beautiful Rainbow

taken right out front of my house on Friday evening.

Enjoy your day my friends!

Feel free to leave a comment or email me at teenahope@gmail.com

Music Expresses My Son's Feelings

My husband sometimes makes disdainful comments about HistoryBoy's choice in music. Well he is 10, and for most of his life he has been surrounded by PBS and me. So let's see what are his choices in music. HistoryBoy has outgrown the kiddie music, although he will dance right along with it when he is around his younger cousins. I guess I listen to "chick" music as my hubby likes to call it. I like Rock N Roll (Aerosmith is my fave all time band but I don't think I am ready for him to go around singing them yet) but for the most part I listen Pop and Country pop crossover stuff. I listen to those Now that's what I call Music CDs alot. So HistoryBoy's choice of music tends to run along toward my taste. Although he has developed his own love of Bon Jovi and Daughtry, which I think is cool, and I attribute to Rock Band. (Hey I'm from Jersey, I love Bon Jovi!)

Sometimes, he gets stuck on a song and I don't pay much attention to it, but this past week was a rough one. Then we had a really rough day this week and he has been singing this song, and I noticed that he put in on repeat in the CD player in my car so I am hearing it now for the 3rd time in a row and I ask him about it. He says "Mom, I like the lyrics. Listen to them, please." And he takes my hand and rubs it against his cheek and kisses it.

I really listen to this song. And I realize that while my son can't verbalize a lot of the time what is going on inside him, this song, while not exactly how he feels, got it. I put the lyrics and the video link to the youtube video, it's the icarly girl, Miranda Cosgrove singing the song. The chorus especially got me because it is something he says to me when he can't say what he means

Can we bring yesterday back around?

Cause I know how I feel about you now

I was dumb, I was wrong, I let you down

But I know how I feel about you now

He always tells me "I am so dumb." when he is upset and I ask him what is wrong he can't tell me. And I tell him, he's not and no one I know has ever thought that about him. Everyone I know always tells me how smart he is. After listening to these lyrics and then downloading the lyrics and reading them too, I was just so moved by what they said. Maybe I am reading more into it than there is to it. Maybe he just liked the song. But when I told him I would listen to it. He was so happy. He hugged my arm (I was driving him to school) He asked me to promise I wouldn't change the song so it would be on when I got him from school. I promised. He smiled at and gave me a HUGE smile and a hug and said "Thanks. I love you mommy!" What more is there to say....

"About You Now"

by Miranda Cosgrove

Maybe I'm wrong, you decide

Should've been strong, yeah I lied

Nobody gets me like...you

Couldn't keep hold of you then

How could I know what you meant?

There was nothing to compare to

There's a mountain between us

But there's one thing I'm sure of

That I know how I feel about you

[CHORUS:]

Can we bring yesterday back around?

Cause I know how I feel about you now

I was dumb, I was wrong, I let you down

But I know how I feel about you now

All that it takes, one more chance

Don't let our next kiss be our last

I'm out of my mind, just to show you

I know everything changes

I don't care where it takes us

Cause I know how I feel about you

[CHORUS:]

Can we bring yesterday back around?

Cause I know how I feel about you now

I was dumb, I was wrong, I let you down

But I know how I feel about you now

[BRIDGE:]

Not a day, pass me by

Not a day, pass me by

When I don't think about you

And there's no moving on

Cause I know you're the one

And I can't be without you

[CHORUS: (x2)]

Can we bring yesterday back around?

Cause I know how I feel about you now

I was dumb, I was wrong, I let you down

But I know how I feel about you now

But I know how I feel about you now

Yeah I know how I feel about you now

Follow-up to the Medication Game

There were a few things I forgot to mention in yesterday's blog about HistoryBoy's ADHD medications.

In 2nd grade, we were struggling to get his homework done after school (it is still a struggle and I imagine is just going to be more fun as he gets older YEAH!). Meds had worn off. So his attention was all over. Unless I was sitting next to him pointing out each problem individually about every two seconds, it didn't get done. It was frustrating for both of us. The neuro, Dr McStuffy (only called that because that was how he came off to us at the first visit. He grew on us over the years. HistoryBoy loved him though) added a Ritalin dose after school. Some days it seemed to help, some days it didn't. I don't know why. At a 3 month check up, McStuffy asked how it was going, I told him, he said since it wasn't a resounding YES then he was going to stop it. I said ok. To me, what is the point of medication if it is only going to work *some* of the time.

Then to our dismay our Dr. McStuffy, left his practice to work too far away for us to follow him, so we switched to another great childrens's neuro practice, Dr Kelso, (any Scrubs fans? Although the name was not chosen for his mannerisms, he kinda looks like him a little) who was very impressed with the thoroughness of Dr McStuffy's notes on HistoryBoy's behavior and his previous out of control ADHD and all that. Dr. McStuffy had apparently been noting all his Aspie's tendencies WAY back before we talked about Asperger's and got the diagnosis and such.

So now Dr. Kelso is the neuro who had us lower HistoryBoy's medication. He had originally wanted us to go medication free in the summer between 3rd and 4th grade with HistoryBoy. I said I wasn't sure we could do that for a whole summer. HistoryBoy can't go out without medication. Thankfully, my HistoryBoy is very articulate when he wants to be he turns to Dr. Kelso and says "I can stay home with Mommy and Mimi without medication, but if I want to go the pool or to the beach I can't handle all the people and noise without medication. I can't even go to friend's house." Just to let you know HistoryBoy was 9 at this time, and I was so proud of him. Also, Mimi is my mom (his grandmom). Dr. Kelso then told us to use medication at our discretion. If we were going to be home then don't, but if we felt we needed it, use it. I felt that was fair.

Now the one thing I didn't mention yesterday, which I think is funny is that at our last checkup Dr. Kelso said that HistoryBoy was doing great he was 50%/50% where he should be, but he didn't see any signs of his ADHD. I was like *DUH.* The meds are working great. Let's not mess with them. Well he wants to see HistoryBoy in all his ADHD glory UNmedicated at his next appointment in August. My eyes widen a little. HistoryBoy said “uh doc that is not a good idea I am going to be...” (and then he does his best imitation of a mental patient having a seizure). Doc just kind of looks at me and ignores HistoryBoy's antics. And says again he would like to see him unmedicated. I sigh and agree.

Poor Dr. Kelso doesn't know what he has let himself in for...

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

The Medication Game

As you know, in addition to his Asperger, HistoryBoy also has ADHD. I should probably also add that he has asthma and horrible allergies, allergic to the world, excepting food mostly. He will never be able to eat a Reese's peanut butter cup as he allergic to both peanuts and chocolate without breaking out in hives but thankfully that is all the food allergies he has. However he is allergic to grass, trees, pollen, ragweed, dust, dust mites, pet dander, cats, mildew, mold. There is no *good* season for this child. But I digress. He takes meds for these conditions, specific meds for his allergies and asthma. But the ADHD is always a game to find what works.

When he was 5 and we decided to first put him on meds. We tried Adderall. It was a low dose and wore off VERY quickly. He didn't make it through 1/2 day Kindergarten on it. We switched him to full-day Kindergarten. It was amazing how much better he did in all day Kindergarten. I should say at this point he was about 95% for height and 80% for weight according to those little charts docs like to fill in each time the measure so he was a nice healthy kid size. :)

Now for first grade switched we had to switch the meds to the Adderall XR (extended release). The regular ones were seeming to wear off by lunch time and I was NOT for increasing the dose by a significant amount. He was so skinny already. He wears slims and if they are not adjustable waists, they still might be too big! There were only 14 students in his class and his teacher was amazing and she was OK with me not increasing his meds. She understood my concerns, thankfully. I kept him back in 1st grade so that he could mature. His social skills or lack there of were pretty obvious and I felt that he would benefit but staying back, by the end of the year we were still at 10 mg Adderall hoping not to increase again for a while. By the end of this year he was about 90% for height and 75% for weight according to those little charts.

In 2nd grade, it was a rough year for a several reasons I won't go into now. But we had to up his meds again, to help him cope with the classroom. I so now he is on 15 mg of Adderall XR, which seems to be working well but his Aspie symptoms are rearing their heads in the classroom majorly for the first time. But anyway I said I wasn't going into that now, that is my RANT for another blog full of choice words and goodness. HistoryBoy was in a self-contained class for 1st grade both times with the same teacher. He was in an inclusive class for 2nd grade. I WILL talk more about this another time. One of the teachers in the classroom kept wanting me to UP his meds again, saying he needed more medication. I kept arguing with her. I finally just started ignoring her. Note: It is not usually in your child's best interest to ignore one of his teachers. But anyway. By the end of this year he was about 75% for height and 50% for weight according to those little charts

For third grade, we need to increase the meds again. They are wearing off, but the increase to 20 mg is too much. He is a zombie. So we switch the meds to Vyvanse 50 mg which is supposed to be the equivalent to the Adderall dosage he was on. OMG it was a nightmare. When he came down off the med I thought Linda Blair had moved in and his head was going to spin! It was meltdown followed by tantrum followed by meltdown. I called the doc and said NO WAY. This med has got to go! So we lowered the dose to 30 mg which he said may not work as well since it was only supposed to be equivalent to 10 mg of Adderall XR. Just Great! But anyway. It does work. The vyvanse is longer acting and he makes it through the day and it is a lower dose! YEAH! But wait here comes the problem. Checkup HistoryBoy is now was about 50% for height and 25% for weight according to those little charts. Pediatrician says we have to do something with his ADHD meds. His weight is affecting his height now. Make a following up with Neuro and let him know what's up.

So we go. Neuro says two options, stop ADHD meds altogether. Um Hello have you met my son? You can't talk to him or get his attention with out medication? Unless I am planning on staying home alone with him ALL the time. THAT is not an option! I try to give him a break from medication in the summer if possible but if we have anything to do, there is no way we can go and NOT be medicated it is a recipe for disaster. He will lose his noodle. Or we can try lowering the dose. That one is tricky. He is doing well on 30 mg and to lower the dose at the end of a school year (end of 3rd grade) and keep him on it until he gains the weight they want him to. Not sure his teachers will like me too much. But we opt for option number 2. And it works out well for the most part. He has to work harder on controlling himself, which is good. He (well was 9) is 10 now and needs to work on these skills. He can recognize when the medication is wearing off. He can tell his teacher. I need to take a walk I am getting distracted.

In addition to lowering his dosage, I had to add fat to his diet. They suggested whole milk, I just give him more go-gurts. He will eat those things. I can't get more milk in him. Don't know why. Also, instead of the nice healthy snacks he loves after school like carrots, celery, banana or apples, give him butterscotch krimpets. If he wants ice cream, let him have it. Let him eat milkshakes. My son is a great eater. He eats the good stuff before the bad stuff and now I have to undo all that? UGH!!!

Now this year, fourth grade, he has been on Vyvanse 20 mg, which was working well (mostly well) until he reached about 75 lbs which appears to be his weight limit for this amount of med. So he has reached the weight they wanted him to reach he is about 50% weight, 50% height, but the med dosage they want him on no longer functions the way it should so we have to increase the dosage so we need to increase it. So a year from now, am I going to end up where we were a year ago?

I am glad my son is such a good eater and thankfully, eating Tastycake Butterscotch krimpets hasn't killed his love of bananas, apples and yogurt!

Feel free to leave a comment or email me at teenahope@gmail.com

stark.raving.mad.mommy (SHE ROCKS) has a great blog on this too

Doctor's Orders: More Nutella

Animal Planet and the Bird and the Bees

I like Animal Planet for the most part. There are a few shows I could do without but HistoryBoy loves documentaries and learning about this animal and that animal and as mind numbing as some of them as for me, this is fun for him, so we watch, or I sit with him while he watches and have a book with me or my laptop, which probably is cheating in the quality time mommy handbook but sometimes you do what you have to do to keep your mommy sanity.

Somewhere around the age of 8, HistoryBoy asked about sex, and it wasn't a passing question as I hoped. You know what I mean. Do we have bread? What's sex? Is Battle 360 on later? A question where he wasn't really interested in the answer right now, where it had floated along with everything else in his mind and fought for an opening to come out. Well he sat and looked at me and waited. "Mom, what's sex?" He asked again. I looked at him and asked where he had heard about it, he told me on CSI. That is when that particular show went off of his watch list, poison interest or no poison interest. (See yesterday's blog for more info on this) I said OK. Then it came to me, all of his animal planet watching and info was a blessing. Yeah! It wouldn't be as hard as I thought!

Ok HistoryBoy, you know what mating it right? "Yes" What is it?, I asked him. "When a male and female of a species get together to make babies. I saw lions and meercats and even the monkeys on animal planet one time. I saw a baby whale being born too!" OK, good. Sex is mating between a mommy and daddy. "Ok, but why is it called sex and not mating when people do it?" At this point I am just glad I didn't really have to go into a description of sex with my son. I am not squeamish, I just was not quite ready with all the details and how to approach the topic with him. They are synonyms sweetie. Do you know what synonyms are? He gives me his best *DUH* look and says "Mom they are words that mean the same thing. So mating means the same thing as sex?" and I say yes. He says "Ok" I can tell he is thinking about. I think I have totally managed to make it through this talk without screwing up or losing it or anything when he turns to me and say "Mom, can you and dad give me a demonstration?" And that is my HistoryBoy

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What is *Appropriate* Television For a Child?

Ok, I admit it. I am not a fan of the big purple dinosaur, but singing and dancing are one of HistoryBoy's favorite things (remember Calming with Music), so a small amount of Barney was in my television diet. I have to admit. I LOVE PBS. I loved Sesame Street as a child and was delighted when HistoryBoy took to Cookie Monster and Grover just like I did, even if Mr. Snuffalupagus wasn't Big Bird's imaginary friend anymore.

I kept HistoryBoy away from anything that had a child who was mouthy or whiny. Ok fail here for PBS for whiny Caillou but that is only one fail among all the other GREAT programming and NO I do not work for a PBS affilliate, LOL. I just want to be able to sit and not have to worry that my child is going to inundated with brats. No Rugrats! Or tv shows that encourage my addictive child to "Collect them all" ie Pokemon. He also loved Zaboomafoo, the Kratt brothers do a great job teaching kids about animals and animal safety.

I will admit that I was a fan of *some* Nick Jr programs. Blues Clues was great (to a point..there is a future blog coming about this) And I could stand minimal Dora and Diego. I did keep him away from Nick shows like Jimmy Neutron, I just didn't like the way the kids talked to each other, especially Shelley and Jimmy. Also, Sponge Bob, I did not need him imitating the idiotic nonsense on there. I probably sound like the TV nazi now.

Maybe this is how our TV education broadened from PBS into Animal Planet and then into History Channel and so forth, because I was not against him watching these programs. They were educational and expanded his mind rather than numbed it. I don't think that makes me a bad mom.

I will say that for a little while his favorite TV show was CSI. I know it is not a kid's show but he loved knowing what kinds of poisons did this or that to a person. He would look them up on the internet. Thank goodness than neither myself or my husband turned up deceased or it would have looked suspicious to have poisons being researched on the computer on a regular basis. Thankfully it was a short-lived interest and both my husband and I lived through it. LOL.

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Sunday at Church with HistoryBoy

Usually Sundays are not too bad. They are relatively easy-going days (with the exception of Easter Sunday). HistoryBoy was up and dressed and ready to go to church. I should say he was up early and ready to go. Up AND READY in enough time to watch a movie before church. SO we sat as a family and watched a movie, which was really nice because usually it is like pulling teeth to get anywhere on time with HistoryBoy but that is another issue for another day.

So we get to church, and of course HistoryBoy wants to sit in the loft. It is his favorite place to sit. He can be high up and watch the mass and people down below and there are only three pews in the loft so it is not overloaded with people. To let everyone know, I am not against sitting in the loft, but the pews are uncomfortable, when they replaced the pews with comfy ones in the lower church they did NOT replace them in the loft so they are old uncomfy wooden ones AND I am not so good on stairs with my hip, but I want HistoryBoy to be able to handle church so we do what we have to do.

Apparently, today something is off though. He keeps pacing the loft, which is not usual for him. He usually stands at the front staring over the rail for most of the mass. When he is not pacing he comes over to me and wants to sit on my lap, which I let him at first but he weighs 70 lbs and I can't take the weight more than a few minutes, so he sits on the step next to my pew and rocks himself. I know something is up, I rub his back and he puts his head on my knee and keeps rocking. I ask him what's wrong and he shrugs he doesn't know. He says he feels overwhelmed but he doesn't know why.

I feel so bad for him. He is trying so hard, I just want to take him home and make it all better. He stands when it is time to stand although he is clinging to me like a lifeline. When it is time to sit, he curls up and does his rocking thing. The only time I see him open up is when they start singing "Lamb of God" which had always been his favorite song at mass, and he starts singing, beautifully. I love my HistoryBoy.

When mass is over, he gives me a big hug and asks if we are going to go see GG (my grandmom) now. And I realize now why he was so upset during mass, even if he doesn't. He was trying to work out his sadness over GG being sick, and even though he wants to see her, but it is hard for him to see her so sick. He had asked on Saturday about going to see her after church on Sunday and I had said it was a very good idea if he would like to. Given the meltdown he had after his visit on Monday night, I was a little nervous, but if though he was up to it, I wasn't against it.

There is no easy answer to helping him cope. No simple way to make her all better. She is 87 (maybe 88?) years old and may not get better. That is the real problem, for us and him.

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The Importance of Friends: HistoryBoy and HyperGirl

If I haven’t mentioned before, HistoryBoy’s best friend is HyperGirl. They are peas in a pod. Forest Gump would say that are just like Peas and Carrots. They have been friends since we moved here about 7 years ago. At 3 years old, kids don’t care about whether you are a boy or a girl, at least HistoryBoy didn’t. He only cared that she liked Thomas trains. So a beautiful friendship began.

HistoryBoy describes HyperGirl as the female version of himself. And what is great about their friendship is that they give each other the space they need. HyperGirl says to me, HistoryBoy is having a meltdown, I’m going home. Or HistoryBoy comes home from her house saying HyperGirl is being too HyperGirly. They know each other’s limitation and quirks and don’t judge. It’s great. And when they have cooled off, they are off playing again, maybe later that same day or the next day.

HistoryBoy and HyperGirl are together most days after school, playing outside on nice days or rainy days indoors on the Wii. They are protective of each other. No one messes with one of them if the other is there. So they both feel safe

We have been lucky that HistoryBoy found such a good friend. It is very hard for HistoryBoy to be comfortable around kids his own age, and make friends. We are working on his social skills, but I think HyperGirl is a HUGE part of the development of those skills because he isn’t afraid to interact with her and tell her “No I don’t want to do that,” or “I want to play this.” I don’t think HistoryBoy’s social skills would be as good without her. If you aren’t as lucky as me to have a HyperGirl, look for a support group, at least one parent should have a child your age or close to it, and hopefully will be able to interact successfully with your child.

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When Tuesday Becomes Thursday

This is a blog about me. I have talked a lot about HistoryBoy. But I needed a little me time here, it is my blog after all, LOL. HistoryBoy is my sunshine, truly. He is the reason I get out of bed in the morning, even on days when I feel like I can’t, because I am too sore, or too tired or both. For those of you that don’t know, I have Lupus, it was diagnosed at 15, which was 20 years ago, so I cope fairly well (I think) with it, but I also get horrible migraines and I was diagnosed with Fibromyalgia on top of the Lupus, so I am not coping as well lately.

I have had a couple of bad days (weeks… months), and they all blend together. I mark my calendar by doctor appointments. Tweak this med, add this. Does this help? It is the roller coaster of my life. Or it is how it feels sometimes. I am NOT asking for sympathy. All I am asking for I want energy. I want to bottle HistoryBoy’s energy and shoot an IV full of it into myself for even a day just to feel like myself again, even a little of my old self. I miss working and being able to do things that others take for granted.

I am on new meds right now which are helping but still not quite working and having some side effects, although not as bad as some other meds I have taken in the past. I just hate the let’s hope this works game. I always have to play do the benefits outweigh the side effects and lately the answers to those questions has been NO.

A friend of mine asked me, with all of my problems, what keeps me sane each day? What have I found that keeps me going? I told her my son keeps me going and my mom. My mom checks up on me every day and makes sure I am still kickin' whether I am having a good day or a bad day. Also, NOT focusing on what I can't do and thinking of what I can and will do. Guess I have to listen to my own advice and start figuring out what I CAN do and not worry so much about what I can’t.

I CAN finish this blog and then I CAN take a nap. Ahh I feel better already!

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Lack of Sleep Causes Mommy to Be a Zombie!

Today's blog is short and silly because I decided to go back to sleep again.

Apparently the lack of sleep the other night not only affected HistoryBoy it affected me as well. I expect to be tired, but I couldn't keep my eyes open. After HistoryBoy plopped back into his bed, I did the same. We both woke sometime after lunch, and curled up in my bed to talk and watch a movie. I was still tired and achy though so I fell asleep again. When I woke, HistoryBoy laughed at me. Now he is usually very good about my naps and such. I mean he has been living with my lupus his whole life, he has never known me differently. He told me, "MOM! You have HUGE black circles around your eyes. Did someone punch you? Are you turning into a zombie? That is so cool! Daddy likes the idea of a Zombie Apocalypse. Are you the first?" HistoryBoy, why don't you go turn on the History Channel and let mommy alone for a little bit ok?

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Asperger's is not alone - Part 2 - Anxiety Issues

I though about calling this blog "What does he have to be anxious about?"

Anxiety seems like such an adult word. Most of my friends and family know that HistoryBoy has a mixture of health issues yet when I mention to people that HistoryBoy has anxiety issues. They look at me strangely. "What does he have to be anxious about?" Almost everything, anything can stress him out. What will happen on his TV program if he doesn't see the end? We don't have juice boxes in the pantry, what is he going to have for snack tomorrow? If my two best friends are absent from school who do I play with on the playground?

These don't seem like huge problems. The TV show is most likely on again, or I could record the end of it for it. I can go to the store to buy more juice boxes. He could play with someone else on the playground at lunchtime. But it isn't that simple in an Asperger's world. I wish it was for him. For him, that TV show may never be on again, an he NEEDS to see it end. He knows the only way to get more juice boxes are to go the store but he really doesn't want to brave the supermarket to get more, so what should he do? And as with all Aspies, his social skills aren't quite up to par, so his friends are his comfort zone. They know his, they play with him, they allow him his quirks, how does he approach another kid. (This happened one day this school year, he refused to go to school the next day because he said it was too hard, he sat crying and wouldn't say why) It took him over half of recess to join another group of kids and interact with them.

How can such a small package wrap so much anxiety up inside himself?

Asperger's is not alone - Part 1 - Sensory Issues

HistoryBoy as you know has Asperger's, but he also has ADHD, sensory issues, horrible allergies, asthma, stomach and intestinal problems. I have heard from other parents that their children also have multiple issues, while not necessrily the same issues as HistoryBoy, Asperger's does not seem to travel alone. I would love to hear from more of you on this issue.

I first noticed HistoryBoy's sensory issues when he was about 18 months old (maybe a little younger) and when I would flush a toilet, especially out in a public restroom he would shriek and hold his ears like someone was hurting him. I started telling him to hold his ears before I flushed so he wouldn't freak out so badly, sometimes there is no avoiding a bathroom even as badly as you want to.

Also, at first people seemed to be a nice diversion for him to look at and then suddenly there were too many people, he needed to hide, he needed a dark place to go to. If you read my blog on May 3, "Calming with Music", I mentioned plopping HistoryBoy into the stroller, well this also worked here. Sometimes music would help calm him, once he was overwhelmed by people, sometimes not. More often than not, what I would have to do, is put my jacket over the stroller front so no light got in through the front (I started bringing a blanket after a while) so that I could get what I wanted to or needed to done. I know I could have gone home and waited until later but sometimes you NEED to get out of the house with a 2 - 3 year old and he was also learning if he acted up I took him home, I needed to establish a better pattern for myself and him. Sometimes I need to get out of the house with my 10 yr old and I wish I could throw him in a stroller with a blanket over him to soothe him! lol!

As he got a little older tags in clothing became a real issue (Thank god for tagless clothing!!) Instead of ripping out all the tags, I put tagless undershirts under all his tops, even T-shirts. This way I could still go through his closet when I needed to clean it out seasonally and get rid of everything by size without having to try to measure up this shirt to that shirt, so they still had size tags, YEAH! lol

I mentioned his need for clean hands on April 27, "Please Don't Let Me Get Dirty." He hated dirty hands. It is better now. Sometimes I even have to tell him to wash his hands after he has been playing outside like a "normal" 10 year old boy. To me HistoryBoy is my norm.

Sensory issues seems to be a huge part of Asperger's for HistoryBoy. Early clues for me that I didn't know to look for. Peditrician told me HistoryBoy just had very sensitive ears as did ENT when I took him at age 2 because of his bathroom freakouts. His issue with tags in clothing my mom said "I always hated tags in clothing. They always bother me, I rip them out" So I figured it wasn't unusual. Just because they don't bother me, doesn't mean it can't bug other people, right? I look back now and I can say yes I can all his issues now, but I don't know if I could have done anything differently back then. I did what I was supposed to do. I took him to the Dr, I followed up with the ENT. Unfortunately we needed more pieces to this puzzle.

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Aspie Obsessions - Part 5

This #5 in a series of blogs about HistoryBoy's Asperger's obsesssions.

If you read yesterday's blog, you will probably realize I was grateful for a lull in the last obsession. He went from disasters into wanting to know everything there is to know about ships, and planes, mostly dealing with World War II, hence his HistoryBoy name. Although I guess it could apply as early as his obsession with trains, LOL.

He knows all about World War II. He knows battles inside and out, especially naval battles. He knows the names of all these Japanese ships that I can't pronounce. He knows which planes bombed which cities, which planes bombed which carriers, which carriers were sunk. My mind boggles at the thought of sorting and storing all this info. He lives and breathes WWII. He creates battles with legos and Matchbox airplanes mimicking WWII battles. He creates HUGE battleships and planes of legos and then destroys them only to rebuild and do it all over again. One of his current favorite books is the Encyclopedia of Military Aircraft of World War II. He also own two other encyclopedias of aircrafts and ships and one on submarines. We went to the neurologist and the doc asked him if he was such a WWII buff what was the name of the plane that dropped the bomb on Hiroshima. HistoryBoy looks at him and tell hims "That's too easy, It was the Enolagay (I don't think I spelled that right) a B-29 super-fortress." And he then went on to describe the type of bomb dropped and the devastation it caused. My HistoryBoy.

Obsession for HistoryBoy are all cycles. I know I forgot a couple of obsession in there. He went on an animal obsession somewhere in there, I forget where it started and ended. We still own several encyclopedia of animals and alot of books on reptiles, his favorite type of animals. He also liked dinosaurs for a while. Now I should say that I am not saying to anyone that your child should have changed obsessions from one thing to another as mine has, if your child only has one obsession and has stuck with it. That is great or maybe not so great for you, I guess it depends on the subject and your tolerance of it. Maybe HistoryBoy's ADHD has made the difference on that point. I do know that it does not level the intensity with which he obsesses. I do not clain to have all the answers or any of them, I only have one child and that is HistoryBoy and he is my learning curve on the subject. Talk to you tomorrow.

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Aspie Obsessions - Part 4

This #4 in a series of blogs about HistoryBoy's Asperger's obsessions.

So Thomas, trains, and the Titanic... and we are only around age 6 or 7. LOL HistoryBoy amazes me each and every day with his mind and his recall of facts and events. From the Titanic we cross a bridge into other disasters. Did you know the Titanic has two sister ships that both sank? Did you know that the ship, The Carpathia, that rescued the passengers from the Titanic was sunk (I think) two years later? We went through months and months of him looking watching videos and reading stories about Titanic's Sister Ships and other ship disasters. He had to have more and more info on ship disasters.

Then it went to air disasters. He learned all about the Hindenburg, And thanks to a Myth Busters episode, HistoryBoy got even more excited because they showed why they paint helped the dirigible burn and it wasn't just the hydrogen even though the hydrogen was highly flammable. He has watched the history channel videos of the Hindenburg.

Then, since he was only 1 when it had happened, HistoryBoy didn't really know about alot about 9/11, until he came across a video on the history channel and watched it and became obsessed with knowing all about it and all the details of the planes that crashed both into the World Trade Center and into the Pentagon. He became an overnight 9/11 mini-expert.

Then someone gave him a boy about Rome and he learned about Pompeii, and needed to know all about volcanoes. From Pompeii he learned about Mt. St. Helen's and he kept looking up new volcanoes and eruptions to learns new facts. He wanted to learn about any kind of disaster natural or otherwise. He wanted to know about and learn about it.

I have to say this one drove me nuts because I try to avoid listening to death tolls in accidents and disasters. I hate to think about it, and that is what he wanted to talk about. As you know with your Asperger child, if they really want to tell you something, there is no stopping them. It is like a geyser pouring out of them, and they will explode if the information doesn't come out. It's like trying to stop a natural disaster. LOL

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Mother's Day

I interrupt the series of Aspie obsession blogs to take a step back to think about what today means to me.

We are blessed. We struggle on a daily basis, but we are truly blessed. God gives us what he knows we can handle. We may not always believe that and I know some days we feel like we are in a sinking ship with no hope of reaching shore but we manage, we survive, we make it through. It is what we do, for ourselves, for our families, for our children.

Our children may not be able to express their appreciation every day, but when they can and do, our hearts overflow. Each step they take forward makes each sacrifice worth our efforts, and we know we are blessed in our children.

Happy Mother's Day to all the mothers out there!

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Aspie Obsessions - Part 3

This #3 in a series of blogs about HistoryBoy's Asperger's obsesssions.

I've talked about HistoryBoy's obsession with Thomas and trains. But I haven't gotten to the good stuff yet. I am not sure but somewhere around age 6, I don't even know HOW, HistoryBoy became fascinated by the Titanic and everything that went with it. I have to say I knew the Titanic sank way back in the day and lots of people died but that was really the extent of my knowledge. I am not a history person, I do not know why, I have always loved Math and Science and while History is not excluded from those subjects, it just never grabbed me unless it was in a movie. LOL. So I was in for one heck of a learning experience.

Every book that he saw in the library he had to read about the Titanic. Every book he saw in Barnes & Noble he wanted to read and believe me we own quite a few of them.. Every documentary on the History Channel (there are several) he had to see as well. Did you know Orlando has a Titanic exhibit? HistoryBoy did. He found it and asked us, begged up, and pleaded with us to take him to it instead of a day at Disney World. This is my kid. It was a neat Titanic tour, about an hour long, I think, so if you need a break from the parks, this is something educational you can do. I think it was on I-drive, if you *are* interested. You can look it up Titanic: The Experience Orlando, or something like that.

Now I purposely kept Matt away from the movies of the Titanic because I really didn't think he was ready for all that. I mean what 6 year old really is. But he saw my mom had the VHS version of the James Cameron version of Titanic (which is 2 VHS tapes) and begged to watch it. So we sat down one afternoon to watch it together. He sat through it and cried through the whole end of it. He gave the 2nd tape back to my mom and said he never wanted to see that half again but he was going to keep the first half. I think it was one thing for him to know all the facts that 1500 people died in the sinking of the Titanic but the visualization was a lot to take in. The special effects of the James Cameron version were more vivid than any previous version and he has seen 3 or 4 other versions of Titanic since then.

While this particular obsession had abated somewhat, (you will see what I mean in tomorrow's blog) he still retains all this info. How do I know because his neurologist just asked him about the Titanic and he gave him a fifteen minute run down of the Titanic from the building of it to its sinking. The doc was impressed by his thoroughness. LOL. As am I ALWAYS!

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Aspie Obsessions - Part 2

This #2 in a series of blogs about HistoryBoy's Asperger's obsesssions.

Yesterday I talked about Thomas the Tank Engine. Well from Thomas, his interest stayed with trains but branched out to real steams trains and then to any type of train in general. This interest started with finding out that some of the Rev. W. Awdry's trains, author of the Thomas stories were based on real trains. While wandering through Barnes & Noble, HistoryBoy found a book entitled The Illustrated Book of Steam and Rail. It is a reference book, 512 pages, lots of pictures, lots of words describing each picture in detail. In this book, HistoryBoy found a picture of the the real "Stepney" engine.

Can you imagine it, a 4 year old poring over this book and getting so excited over it? Adults are looking at me with amused glances thinking that the poor child doesn't know what he is looking at. I am thinking "Oh no, not again." I know I am in for a completely obsession, except now instead of hearing about Thomas, I am going to learning about rail gauges and rail lines and how fast this one goes, when they started production of a particular train and when they stopped making it.

Thankfully he found the book in their bargain book section so I am not against buying it. Usually the books he really loves are SO expensive. I mean, really, what reference book is cheap to buy? Thankfully he does love the DK Eyewitness Series which is relatively affordable, so I can buy one here and there for him, and he can ask for them as a gift for his birthday for Christmas from a relative and get it.

And I was right, I learned about narrow gauge, standard gauge, mountain gauge and high speed train like the bullet train. I know there are probably some I have forgotten too because, thankfully, this obsession has subsided somewhat, but when some breakthrough on speed records for trains (like the bullet trains) or some new patents for design, he knows about it somehow. How I amnot sure, he just says he heard about it and knew. (Does he have train ESP?) And needs to look it up and get all the new info on it so he can be up to date. And we still own the Illustrated Guide to Steam and Rail to look up anything he may have forgotten.

Until tomorrow...

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com