The Mystery

In the almost 4 months Axel  has been home, we have not had one single toileting issue during the day. We did have to teach him how to go standing up, and deal with some stubbornness, but never had an accidents.

I was gone for part of the evening, so Dean did dinner with the kids, etc. When I got home Axel was already in his pajamas. He usually likes to hang out with us and watch TV in the evening, but tonight Dean said he sat for only a few minutes after dinner then headed to his bedroom to play.

VERY unusual for him to do this at night.

Imagine our surprise tonight when Dean went to tuck Axel into bed and found his bed soaking wet. Freshly soaking wet. Just the comforter, nothing else. As soon Axel realized we knew this, the guilty face and tears showed up. I pulled his clothes he'd taken off out of the hamper, and they were dry.

Axel went to bed without a blanket.

(although he never sleeps with one on, later after he's asleep I'll put one over him.)

I think putting him into school just upped the ante around here in all kinds of ways. This is going to be our next battle of the wills, I think.

Blissfully ignorant

That is how I spent the majority of my day today. Blissfully ignorant of what was happening outside of my own little bubble. I put a smart ass comment on Facebook that said,  " Just in case you wanted to know...I am in the grocery store...ALONE!!!" I came home and put dinner in the crock pot, made a bunch of necessary phone calls regarding Axel's school placement, and just generally putzed around.

Then I remembered I needed to get new work-out shoes because I'm start working out again tomorrow. I was browsing through a store, and was *just* opening my twitter app because I wanted to post, "Shopping for NOTHING in Target...BECAUSE I CAN!" when my phone rang.

It was Axel's teacher. I had a hard time hearing her because of this screaming in the backround that sounded a lot like a child being murdered. "Leah...We need help!" she said. "Is that HIM I hear????" I asked. "Yes, that's him. All the other kids have been removed from the room to keep them safe."

O....M.....G

"I'll be there in 5 minutes." I called the school office and told them they're going to see my fly in the door but I was NOT stopping to sign in. I got there, raced down the hall, passing Axel's class who was now sitting in another hallway trying to have a snack.

I quietly opened the classroom door, and there sat Axel at the table, having a snack, arm cocked to throw his cracker. He jumped when he heard, "WHAT are you DOING?" and immediately put his hands in his lap and got the guiltiest look ever on his face.

"What do you think you're doing? You do NOT behave like this in school. Now you will SIT!" I pulled his chair away from the table and turned him to face the wall. "You will NOT behave like this in school. This is NO!"

And he cried for the first time all day.

Apparently this behavior started before lunch, and it was now 2:45. He attacked kids, pulled hair, lunged at anyone who came into his space. Go read this post, and it will give you and idea of what they were dealing with. And I'm laughing at the fact the district didn't give him a 1:1 aid. The child cleared the classroom!!! And, staff couldn't do a CPI hold on him (like I did in the post I linked to) because of his neck.

So back to my arrival upon the scene....

I told his teacher it was now safe to bring the other kids back in. There would be no more problems as long as I was there. (Where's my super hero cape?) The staff sat the other kids down at the table with puzzles, and we made a HUGE deal out of these fun puzzles. Axel loves puzzles. I went over to him, "No puzzles for you. You are sitting."

And he got huge crocodile tears and his chin quivered.

Impact.

After a few minutes I asked him, "Are you ready to try again?" and he signed, "Again". He came to the table, sat down, and nicely did puzzles for about 15 minutes. It was time to go home, and we decided he should ride the bus home so he doesn't think Mom will come pick him up when he behaves like this (though for him, the preferred thing is to ride the bus. Still, don't want to create habits.)  His teacher asked him, "Are you going to have a better day tomorrow?" and he got that huge guilty look on his face again.

I told his teacher I was going to have them take him to the bus as usual, and I would hang back. He must have thought I left because he started acting up just as he was stepping on the bus. I hollered, "Axel! Get on the bus!" and he got up those steps faster than I thought he was capable of.

Tomorrow there is a new plan in place. I will be going to school, but arriving after Axel gets there so he doesn't know I'm there. I'll be hanging out in the hallway so I can make a sudden appearance should the need arise. He's going to learn very quick that just because he's at school doesn't mean Mama and Papa don't  know what's going on.

The Set Up

Dean and Axel just went to the store. We need toilet paper.

But this trip to the store is really a set-up, and it's totally possible they will come home without said toilet paper.

Axel is a perfect angel when I take him places. Anywhere. I can take him anywhere and he's excellent. Always! For Papa? Not so much. I have heard accounts from other's who've seen Axel and Dean together when I'm not around, and I hear he's a totally different child. You see, Axel is still in the testing phase with Dean, and is really pretty naughty Dean takes him somewhere, so today Dean is showing Axel exactly where the limits are. Today they will be running lots of totally unnecessary errands. The kind that don't matter if you come home without the stuff went in search of.
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They pulled out of the driveway and not 1 minute later they pulled back in, and Axel, who was laughing his naughty laugh,  was brought into the house and deposited in "the spot" at the end of the hall. By the time he got to "the spot" he was no longer laughing and was now crying because he would really rather be in the car.

A couple minutes later Dean asked him, "Are you ready to try again?" and they got back in the car.

..........................

They've just come back with the toilet paper and a few other things, but Axel was brought back to the house and deposited back in "the spot".

"He was GREAT in the store! But on the way out he started grabbing carts and shoving them, laughing the whole time. He did the flop-n-drop in the middle of the street, laughing, and I had to carry him to the car! Then he shoved the cart and ran the other way." Oh...Papa is not a happy papa at the moment!

After a couple minutes in "the spot", Dean asked him, "Are you ready to try again?" They have now headed to a different store to give this whole behaving in public thing another go. Kudos to Dean for sticking with it, and making a day of helping Axel understand that he has to behave for Papa too!
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Well, they made it back, and Axel was excellent in all FOUR stores they went to! He even came home with a chocolate encrusted mouth to prove it. ;-)

Transition update

I decided it's about time to write a post about how the transition is going in general. So lets talk about the areas that are issues, shall we?

Axel is 10, and pretty set in his ways how he does stuff, and not all of those ways are in sync with our house. Most of them have to do with doing whatever the heck he wants, but laughing while he's doing it because surely that laugh is cute and we will let him get by with whatever. Ummm....no. I learned what "the laugh" meant very quickly. Oh, it's an ADORABLE laugh. If you didn't know him you'd think I was the meanest mom in the world when I quickly put a stop to the laugh. That's because you don't know what comes AFTER the laugh! I rarely get "the laugh" anymore, but Dean gets it quite a bit if I leave the house, or he gets brave enough to take Axel out in public.

Yes, I said brave enough. Axel can be quite the little pill when Dean takes him out. Go back and read this post, written after the first day I had Axel. He's not QUITE this naughty for Dean. He's not pulling hair or glasses, but he's not all that far off. Dean hasn't had many opportunities to get out in public with Axel alone to break some of this behavior, but believe me, it's getting arranged now!  He's getting better, and really he doesn't have that far to go. It's just a matter of Dean taking the time to work on it. With me Axel is fantastic about 98% of the time, but I expect that to change a little when he starts school. I expect to see some regression at that point.

When Axel starts school we're going to have to have a behavioral plan as part of his IEP from the beginning, because when we did his assessments last week it was easy to see how quickly he can escalate into total naughtiness! And yes, they are going to be warned about "the laugh"!

There are certain habits Axel has that many 10 year old BOYS have, that...well...when they're done in public places...like the living room...are not really welcome at all! It's clear this is a well established habit, because there is a whole "set up" routine that goes along with it. It took me about 2 days in Serbia to realize exactly what was going on. (Something about his eyes glazing over that gave it away!) I don't know if his foster family just didn't realize what he was actually doing at this time, or if they just chose to not say anything about it. Well, that doesn't fly here very well. There is a time and a place for that, and it's NOT in my living room! This week in particular I've noticed a dramatic decrease in this behavior. THANK YOU GOD!

We are not having any toileting issues anymore. Well, what we had was only minimal to begin with, and really just had to do with Axel wanting control over the situation. Once he realized he didn't have it, that problem went away. He does lie that he has gone to the bathroom when he's sent in. Fortunately he hasn't yet figured out that there is visible evidence in the toilet if he's gone. LOL And, now that we know what his guilty face looks like, it's easy to know when he's done (or not done) something he's supposed to. Even so, I would put this in the category of very age-typical behavior because he does it when he knows after he goes to the bathroom there is a fun thing coming up, like going somewhere in the car.

Like brothers around the world, Axel waits until I'm out of sight to pester his sister. She responds very well to him ("I'm gonna move away Axel!", or "I'm not gonna play with you Axel!" he pushes her too far and she just leaves the area. One of these days he's going to discover what happens when you go to far in pestering someone who is twice your size! But, since he is still new to the family, it's very rare that they're together out of my sight except for times like this morning when I ran out to start the car. As soon as I came back in the door I heard "the laugh" and Angela telling him to stop touching the computer. LOL

So how is Dean doing? I don't know. I'm going to let Dean respond for himself in his blog. (umm...Hello Dean? Did you forget you have a blog?)

How am I doing?

Exactly one month before I left to get Axel, I wrote this post. I have had to go back and re-read that post a time or two to refresh my memory how this all works, and that I'm not crazy. Parenting a child who you do not have a biological connection to is not difficult. It's the "having patience" part that is tough. Patience to wait out those things that are annoying but not truly issues, and acceptance of some things that cannot be changed. Sometimes determining which is which is the hardest part. But we're coming along, and I can honestly say I love this child.

I've found that my expectations for Axel are higher than they are for Angela for some things. It is very hard for me to see that Axel is going to very quickly bypass Angela. In fact, he already has in many areas. It is very hard to not compare them. They are SO different from each other in what motivates them to succeed. They are so different in the rate that they learn. (Axel learned to zip his jacket last weekend after spending 10 minutes showing him. Angela has been working on this for SIX YEARS) This difference has been a push for Angela, making her want to do things independently that she hasn't been able to, or hasn't wanted to until now (like fold all her laundry and put it away) Funny, that's exactly why I wanted one more baby after I had Angela. Funny, God knew we needed to wait and have Axel here instead!

Dean and I are having to make some adjustments that we knew about before we brought Axel home. We were used to having every-other weekend to ourselves when Angela went to her dads. That is gone now. We are now like every other parent who doesn't get a break. We need to find a couple sitters who are willing to come to the house for both kids, or maybe after Axel is in bed for the night since he NEVER EVER EVER gets out of bed once he's in there. (this is one welcomed left-over orphanage behavior!)

All in all, Axel is a very typical little boy. The behavior we're seeing here is VERY typical behavior for a child his age. And when you take into consideration his very typical behavior....well...Axel is a pretty easy kid! He is very easy to redirect, and he responds quickly to redirection. He is soaking up the world as fast as we can expose him to it, and ALL of us are loving watching him experience it.  Life with Axel is good.

Run for the Hills!

Apparently life at school is too boring for Angela! She's become very skilled at spicing things up a bit.

Yesterday she had an AWESOME day at school. Her very last class is adaptive phy. ed. and since it's absolutely beautiful here right now, they went outside to play kickball.

But as with all things, the eventually the fun has to end. Angela wasn't thrilled that kickball was over for the day, so she did what any kid would do when they're not ready to be done...she took off!

Near the ball fields of her school is a series of bike trails. If you follow the right one it'll bring you to an elementary school about 1/2 mile away. So Angela took off up the trail (which is all uphill) with her classroom aid trying desperately to keep up! Her phy. ed. teacher got the other kids back to their classrooms and then he headed up the trail as well. In the meantime, school called me since A) Angela had now missed the bus to come home and B) they couldn't get her to come back. She'd found her way to the ball fields for that school, plopped herself down on a bench, and there she stayed. She wasn't budging!

So I showed up, and her Special Ed. teacher and I walked the same route Angela took. Never again will she be able to tell me she's "too tired" to walk a couple of blocks up our street! Not only that, but where she went is ALL uphill!

Anyway, they brought me to where she was sitting. Here's where the tricky part comes in. When dealing with a kid like Angela, how and what you say is critically important to A) getting her to move and b) not getting swung at. Better to wait and discuss the issue later when you're in a different environment (and not almost a mile away from your car!) I walked up to her, took her hand and in a calm, low tone said, "Let's go." She took my hand and willingly walked with me. I glanced at the school staff (yeah, including me there were now FOUR adults there with this one kid!) were looking at me like, "No way!" because she came with me so willingly, yet was swinging at them.

Angela's aid that day, the original one to go chasing after her, has miffed. The teacher has tried explaining that she can't take it personally. That it doesn't matter WHO you are, sometimes she just DOES STUFF! Also, that Dean and I get plenty of it at home as well. Also, this isn't new for Angela. Her last 2 years in elementary school she wasn't allowed outside recess because she was running away. (and got quite far a couple of times, with school staff on her heels! Finally she was caught by the school principal who had to head her off at the pass in his car! LOL) I laugh, because it's all I can do. I can just imagine the wheels in Angela's head turning, and the glint in her eye as she sees the opportunity to bolt. And of course, there is the thrill of the chase!

I do have to say though, whoever works with Angela needs to be IN SHAPE! You just don't know when you're going to have a game of chase going on.

You might think, "Well, what if they don't chase her? It's not fun if nobody is chasing." Which, with any other kid is probably true. But we've tried it with Angela, and it doesn't work. She just keeps going until she's too tired to run anymore (and we've found a 3/4 of a mile is about her limit! LOL) She also doesn't care about busy streets, and is very vulnerable in a crowd of strangers. She UNDERSTANDS about busy streets, but she uses them as a threat, "I'll run into that street!" and we just don't know that she won't!

She is such a smart kid! I often wonder where she'd be if she didn't have all this behavioral stuff going on. She's so very capable, but the behaviors really hold her back. Unfortunately there isn't much we can do for them (and we've TRIED, with many professionals involved, for YEARS!)

So, we look at the good things. She had a GREAT day at school yesterday. She just didn't want Kickball to end.

Today is swimming. I've had a horrible time getting her to go lately, but we've now come up with a new angle, and she's very excited about it! She should be back to swimming her laps several days a week now!

I've got my kid back!

So, after much deliberation, and trying to figure out what has changed, and what hasn't that would warrant Angela's erratic behavior the last couple of weeks, we decided to try putting her back on one of the meds we took her off 2 1/2 months ago.

Who knows why she was fine all that time, then a switch was flipped one day, turning our world upside down. Whatever it was, that switch has been flipped back and I have my fun, loving, funny kid back. The anger is gone. The aggression is (relatively speaking) gone. The smiles are back. Her teacher even called us on Friday after school, to let us know Angela had an amazing day. I'm sure her teacher was as relieved as we were!

And all is right in the world.

Just being real

This is me, and this is me being real....

I was going back over my blog posts the last couple of weeks, and most of them are negative in some way or another. I guess I'm in a funk! And then I realized why. It has been a very long couple of weeks with Angela.

I have no idea what is going on, but she has been absolutely horrible. There are a lot of factors contributing, I'm sure, hormones being one of them. But the rest? It's a mystery. Some of you reading know Angela personally, and have seen her when she's in her worst moods, so let me just clarify, THIS IS FAR WORSE! I haven't seen this level of aggression in a very long time. I won't go into all the details, but let just say WE ARE AT OUR LIMIT!

Not only have I been in tears every day, but I've gone to bed in tears because I either feel horrible about the day, or wonder how I could have handled various situations differently, or because I'm worried that I'm going to wake up to more of the same the next morning and have to do it all over again. It doesn't help that the only break I can really count on is when she goes to her dad's, and he's bailed on my the last couple of weekends. When all I'm doing is struggling to make it to the weekend when I know I can get a break, and then it's pulled out from underneath me. No, this does not go over very well in my spirit.

So yeah, this whining is all about me, me me me me me me. But what about Angela? She can't be happy. Why isn't she happy? Why is she so miserable that she's determined to make everyone around her miserable. Why is she SO ANGRY? No kid should be so angry. Is this just what happens when a kid can't communicate her displeasure with the world like a typical teenager can? I have been through some very rough teenagers, and believe me, this is FAR WORSE!

Or, maybe she's just in PAIN? Anyone I've talked to with Achalasia says it's excruciatingly painful, and we know that it's progressive. We also know that Angela has started having more trouble swallowing over the past few weeks, so maybe some of this anger is coming from discomfort?

So there are lots of questions, and there are no answers. That's the hard part for me mentally and emotionally. That there is no end in sight. That we will probably have this for many years to come and it makes me exhausted just thinking about it. Angela is so smart, and so funny, and so CAPABLE, but this crap holds her back in so many ways. The other day her teacher was in a situation with her, and kept reminding herself that WE live with this. We don't get to send the kid home and then enjoy the rest of our day. That was both validating and sad, all at the same time.

So that's my "being real" post for today. I'm a person who likes to find the good in all things, and man, I am STRUGGLING with that right now!

Totally Tuesday

Today was a MUCH better day for Angela! She woke up on her own, and came out to the kitchen where I was making breakfast. She wrapped her arms around me in a big sleepy hug and "Good morning. I yuff you mom." That just about makes up for all the rotten mornings!

She ate breakfast, got dressed, teeth and hair brushed, and was out the door in 25 minutes, smiling all the way! That's how her mornings USUALLY go!

According to the note I got in her planner, school was great as well, and she got to feed Bert the Iguana his crickets. (eeeeeeeeewwwwwwwwwwwwwwwwwww) After school she was invited to her friend Adam's house to play.

When Adam's mom brought her home, Adam was very sad she wasn't going swimming with him. He came to my door with big crocodile tears, and I just wanted to wrap my arms around him. Angela adores Adam, and when he left she said, "I'm sad Adam has tears. I love Adam."

She was a little disappointed tonight though. The reason we didn't go swimming is because it's Tyler's birthday and he was supposed to be coming over for cake. Unfortunately he was a bit inconsiderate and forgets how much his sister DEPENDS on everyone following through, and he ended up going to work instead. (his choice, he wasn't required to go.) I made him PROMISE he'd be here tomorrow night! Of course, it messed up our plans for today AND tomorrow, but Angela really wants to see her brother, and I'm busy with the play the rest of the week. Oh well, such is life.

I did get Dudley groomed today! I usually do most of our grooming myself, but lately, being really busy with with the play, I've gotten WAY behind and Dudley was an embarrassing mess. I know he didn't feel very good about the himself either. Even his beard smelled, making Dean and I unwilling to pet him very long. I feel horrible that I let him get to this condition! Well, a few weeks ago I made a new friend who is a groomer, so we're trading grooming services for training services. She's showing me some things that I needed to learn as far as grooming goes, and I'm helping her with one of her dogs that has developed some annoying habits they're not sure how to deal with. And, most importantly, Dudley came home clean, matt-free, and happy!

Tomorrow I have a meeting with a local college, as I explore my options for going back to school. You know, at 41 years old I'm still trying to figure out what I want to be when I grow up. LOL Right now I'm looking at the Sonography Technician program. (AKA Ultrasound tech) with my focus on maternal fetal sonography. This does need some prayer though! The program I'm trying to get into is highly competitive! They'll be looking at my previous GPA's. High school's is hopefully obsolete, because 25 years ago I was a different person, and graduated at the bottom of my class. But, three years later when I went to interpreter training I had a GPA of 3.9! Also, since I never took that ACT's, I'll have to take an entrance exam, and only the top 20 scores (plus qualifying GPA) will get into the program. UGH! The reading and writing I'll be fine with, it's the math portion of the test that will do me in. Tomorrow I'll take a practice test, then I have to take the real one by March 15th. By April 1st I'll find out if I've been accepted for the Sept. 2009 start date, and can begin the process of applying for financial aid.

So, what do you want to be when YOU grow up????

Well happy *&%$ Monday!

Ok, I got Angela to school. She was one hour late, but she was clean and smiling by the time we got there. That's a good thing, right? I question weather it's a good idea for anyone at school to give her a hard time about being late. That would be giving her attention for the attention seeking behavior, which would greatly increase the possibility of a repeat performance.

Then again, NOT saying something is probably the most difficult thing for me to do! It's really hard not to get frustrated and mad at the kid when you're watching the bus pull away and she's still standing naked in the bathroom. I just wish I knew how to better handle this. Clearly I'm doing SOMETHING wrong, but WHAT?? Somebody just tell me WHAT I'm doing wrong!

We have a behavior specialist that started coming just before Thanksgiving. Today will be her 3rd or 4th visit. She's here for an hour and a half and has been PLAYING with Angela. Now, I do have to say the "playing" has been choreographed in such a way that the specialist can see where Angela's limits are, what might set her off, etc. Also, there IS a "get aquainted" period before she just starts pushing Angela's buttons all over the place. But...you know... there is A LOT of money going out the door for someone to come "play" with my kid. AND, after this morning, I don't want to watch them "play" anymore. I want someone to give me the scripts to say to Angela when there is a behavior explosion (because that's what they are, explosions) or when there is a flat out refusal to cooperate, like this morning. I mean, Angela is very much like a 5-7 year old, and she's DOING stuff that a child that age would WANT to say or do, but doesn't because they would get into trouble. But, Angela does it anyway because she WANTS that attention, or just doesn't have the impulse control to NOT do those things. (Yeah, you might have to make a graph for that statement to make any sense at all.) But no matter what the reason is, I need help with it.

What's New With the Queen?

Many of you have emailed to ask what's new with Angela? To be honest, I'm having a really hard time writing anything positive right now. Her behavioral issues have been off the charts since we came back from our trip. Actually, the trip itself wasn't so smooth as far as behavior goes but it's continued to get worse.

About 2 weeks ago we decided it's time for a medication change. The only problem is we have to start the new one and get it to maintenance level and THEN start decreasing the old one. That means that now she goes from crabby to very sedated and sleeping. UGH! Poor kid! We've had to miss a few things (like her favorite last night, agility) because she's just too sleepy. Her behavior is improving some. I just can't wait until we're done with the change.

Last week she was able to go downhill skiing for the first time, which she absolutely LOVED!!! This was a 5th grade field trip, and the adaptive P.E. teacher went along. She told me there are lots of great pictures so I'm waiting for her to send them. Angela even rode the chair lift, which confirmed that it was a good thing I didn't go along! LOL

The Special Olympics area swim meet is coming up soon, and she's looking forward to that! Can you believe it? The same kid who in September wouldn't put her face in the water can now swim 20 meters unassisted. That may not seem far to some, and she still has a long way to go before she's doing a regular freestyle (she's doing pretty much a dog paddle right now) but still she's made major progress!

With the best intentions

Sometimes, when you're a parent, you're forced to make decisions you don't want to make. They're decisions nobody warned you about when you decided to become a parent. As many parents of children who have disabilities will tell you, we're thrown into this position far more, and with more serious implications, than the average parent.

Let's see...what decisions have I had to make? How about when your child needs a life saving surgery, but its considered "elective", which means you have to CHOOSE if it's the best choice for your child, but the POTENTIAL side effects of the procedure could be worse than the reason for the surgery in the first place. Yet not having it would be risking your child's life. Yeah...been there a couple of times.

Making decisions about your child's education is another area. This may seem very simple to some. Most people just send their child to school every day, attend a conference or two each year, read their child's report card. They might even talk to the teacher a couple of times on the phone. I know parents who don't even know the name of their child's teacher! Most never have reason to talk to the building principal, much less anyone higher up in the ranks. Yeah...there are many days when I think "Ingnorance is bliss" is the place I'd rather be.

No, when you have a child who has significant learning issues (and in our case, significant behavioral issues) you don't get to sail through the school years. In the upcoming weeks I have Angela's 3rd or 4th IEP meeting of the year (most parents of kids in special ed. only need to attend 2...we'll have another before school gets out.) I know just about every specialist in her building because I HAVE to, and because they attend all these meetings as well. I speak with Angela's teacher several times per week, and if I go a few days without talking to her we wonder what's wrong! As a parent you have to decide where is the best place for your child. Your neighborhood school is very possibly not the place. You might not even be able to send your child to school within their district, but to send them elsewhere. You put your child who cannot defend themselves, or speak up for themselves, on a bus with strangers and hope that they'll be ok. You entrust them to people who are supposed to be the "experts" but keep having to remind yourself when it comes to your own child, YOU are the real expert. Every day will bring a challenge you hadn't anticipated, and sometimes you'll go to bed at night wondering how you'll get through tomorrow.

Even our trip was by no means easy. There are a lot of times we had to make a hasty retreat from some activity because Angela was starting to get too aggressive. Or the time at at Sea World, while watching the baby dolphin tank, when Angela grabbed the hair of a little girl who was unfortunate enough to be within arms reach.

But with all the decisions I've had to make on Angela's behalf, some of the worst have been related to her medical issues. Right now it's in the form of choosing what/how much/when/why we would want to use medication to get a handle on the behavioral issues. Angela has been on behavioral meds in one combination or another since she was about 5 years old. Some with great success, and others...not so much. But for some reason, for kids with Down Syndrome, even the successes with meds don't last very long before you're scrambling for a new combination.

Our longest success started in July of '06. That little magic pill(s) had Angela go from being a child I could take in public, to her happy, energetic, funny self again. She was truly a joy to be around and take everywhere. I had the pleasure of talking with one of the Guru's in the field of neuro-behavioral disorders in people with DS who confirmed what I already knew....that this success would be short-lived.

It lasted a long time for Angela, well over a year, before things started to go downhill. I started discussing a medication change with her doctors back in October, but then things kind of settled down so I decided to hold off. Well, we can't hold off any longer, so have started the slow process of adding a new drug, then eliminating the old. This isn't something you can do overnight. Instead it takes weeks to allow blood levels to slowly increase or decrease, depending upon the change that you're trying to make. Increase too fast, and you can cause serious liver or kidney damage. Decrease too fast and you can cause serious withdrawals.

What I hate most though, is the fact that I'm pumping my kid full of drugs. One morning last week I cried as I got Angela's morning meds ready. There were EIGHT pills! Some of her meds are not behavior related, like the prevacid she takes for reflux disease, colace to keep her "going", and a vitamin supplement. As I placed her pile of pills in front of her I had to wonder, "Do I even KNOW the REAL Angela anymore?" I know she was without meds for several weeks in the spring of '06 and....well...to say it was "difficult" is an understatement, which is partly why our "miracle drug" seemed to have such a dramatic effect.

Yesterday I cried on the phone to the pediatrician. I hate this. I really really HATE it! How can I keep doing this to my kid? She reminded me that the drug on it's way out is a low dose, and it won't take long to get her off it, and we have a long way to go on the new drug before it's at maintenance level, but I don't feel any better about it.

I just want a happy kid. Right now, Angela is NOT happy! She's spending more and more time in isolation at school because having her with out kids is just not safe much of the time. She's also spending more and more time in her own world doing self-stimming behavior, which I know is drug induced, and makes me want to take her off EVERYTHING. An interesting observation though...I find myself in this same med-change situation at the same time every year. It's definitely cyclical, which makes me wonder about all kinds of other things.

I've heard from lots of parents who's kids with DS are now adults, and they tell me this was the worst age BY FAR! That by high school things settled down quite a bit. I'm hanging onto those thoughts with every ounce of my being.

There are days....

*Disclaimer*
I know there are several parents reading here who are brand new to the world of DS. Please know that Angela's behavioral issues are NOT typical of DS. We don't know why Angela's behavior is the way it is, but there is a significant family history of psychiatric and behavioral disorders so it's really not all that surprising. Surprising or not, the combination of that history and DS sucks!

There are days when I just don't get IT! I don't get what the lesson is. Surely there is a lesson in the happenings of the day. If there isn't a lesson, then WHAT'S THE POINT????? What is the POINT of my child's aggression. What is the POINT of the stress and strain? What is the POINT of this day happening in the first place?

UGH!!! Needless to say, I'm at my wits end today. Angela's behavior has been pretty good for the most part for a couple of months. Although whenever we see one doctor in particular she never fails to display her absolute WORST behavior. I'm glad she chooses that doctor in particular because THAT doctor is the one who gets us stuff (read services.)

Today is a day where I watch the clock counting the hours and minutes until bedtime. Angela doesn't sleep very well, so she takes medication to help her sleep at night. She's usually out within about 30-60 minutes of taking it so I know that if I can hold out until 7:00 she'll soon be asleep. I hate that I can't wait for my child to go to sleep. I don't think that's what parenting is about. Yes, we all have our days, but I'm feeling that way EVERY day.

I'm not getting any breaks these days either. I only have a few hours of PCA available, and the couple people I have to do it aren't available when I need them. Time to find more people. In January we'll have a new neuropsychiatric assessment done, which will get us additional hours, making it easier to find a body to do the job. We'll also be able to get an in-home behavioral specialist who will helps us learn how to deal with the issues at hand. Right now I just feel like I'm drowning.

On a good note, so far this year at school she's been a model student. This is a HUGE change from last year when the behavioral specialists were having to follow her around and she couldn't manage staying with one subject or activity longer than 10 minutes. We did find out she HATES Spanish though! Our district started a charter program and her building is Spanish and Science. Yeah...lets work with English first! Anyway, she'll no longer be participating in Spanish. I'm sure the little girl who has been sitting next to her and getting her hair pulled will be thrilled.

If you're a praying person, please pray for God to calm Angela. Please pray for guidance for those of us who have to deal with the behaviors. The guidance could be insight into what's happening in her mind, or just giving us the words to say and actions to do to address each incident.

After the long grueling afternoon of Angela screaming, swearing, kicking, spitting and hitting, she has now isolated herself in her room with a movie. She came out long enough for dinner then headed back. I guess we all need a break.