Chest Pains

Nathan had tried a new medication at the end of the school year. It was an autism drug, but it was also a blood pressure medication. It really helped him a lot, to calm down and stay focused, and there were very few meltdowns. It seemed to have few bad effects on his behavior or personality, but it seemed to have two apparent side effects that frightened us. One was headaches. They weren't as bad or as frequent as when he was on the ADD medication. And it's possible the headaches were simply caused by overstimulation, and not the meds. He does seem to get them whether he is on the meds or not (though they were much worse and more frequent on the ADD meds). The other side effect had us scared half to death. He complained of chest pains. (The med is a blood pressure med, with the possibility of lowering his blood pressure too much.) Frightened, I called the doc and he was taken off all meds.

But then his behavior started to worsen. He was losing control at daycamp. He wasn't aggressive, thank goodness, but he was certainly out of control: silly, wild, almost drunk on overstimulation. Dh and I knew this would never fly at school. (Camp was definately struggling with his behavior, and they have far more patience with him than the school does. If he behaved like this at school, he'd be dragged out of the classroom, restrained, and sent home. ) But then we started to notice something else...

He was still getting the headaches. And the chest pains.

A month later, and he is still complaining about chest pains. Now I know this couldn't still be from the meds. Dh and I started to wonder if the chest pains were really chest pains at all. What if they were indigestion, or something of that nature? (I have an ulcer in my esophogus, as does my brother. My mother used to have a hiatal hernia, with terrible heartburn. It certainly runs in my side of the family.) We noticed that every time Nathan had complained about chest pains, it was right after eating. It was never after any kind of physical exertion or anything like that. And like I said earlier, he does get headaches when overstimulated, so they might not have been related to the drugs.

We called the psychiatrist, who gave him the meds, and asked if we should start him back on the other pills again, but this time monitor him very closely with a blood pressure machine, designed for kids. Being the cautious doc that he is, he wanted Nathan checked out first. I like that. I took him back to his pediatrician. While we still had a concern about the chest pains, we both had a pretty good idea what the real culprit behind the chest pains was.

I picked up Nathan from camp, and the camp counselor told me he had another good week! He had some struggles at times, but used a break, and he coped just fine. Yay! He even did well on this week's field trip. It was definately good news. I knew it was hard for Nathan, and much harder for the camp, but it was all working out.

(Too bad I can't take these people to the school, and have them show the IEP Team how to work with my son.)

We headed off to the doc. Sure enough, the doc said Nathan had reflux. He prescribed meds for that, wanting to wait and see the results of the meds were, before considering any other types of meds. Fine with me. And having serval weeks where Nathan is able to function successfully in a highly stimulating environment, completely without the aid of behavior influencing medications, will give me some ammo to use against the school when they tell me his isn't capable of dealing with the overstimulating environment of the school.

I don't know if meds will be the way to go. They may make it easier for him to learn, if they can help him control his impulsiveness without any major side effects, and without doing damage to his health in any other way. But I don't know if we would even be able to find that right combination. What if he is just too sensitive to meds, to give anything? And I sure as hell don't want to hurt his health, just to make the school happy.

I was hoping he would be able to deal with the huge group of kids at camp, and all their activity. But that's not going to be as easy as I hoped. I see him struggle, and I want so badly to help him, but I don't know the right way yet. I would consider meds, if they didn't effect him negatively, or downright hurt him. So far, we haven't found that yet. Poor little guy.

And I'm so proud of him! Without meds, he hasn't had any major meltdowns. He's trying to self regulate, and he's being cooperative when the staff steps in and encourages him to take a break (if Nathan's self regulation isn't enough). I imagine the staff is stepping in a lot, and is truly more responsisble for his success than Nathan's self control, but at least he's not resisting them as he has in the past. He's not spinning wildly out of control, to the point of nuclear meltdown. This is certainly better than last semester. He's trying to control himself! That's so wonderful!

I just wish everyday life didn't have to be such a struggle for him.

We're On A Mission From God

It's funny, sometimes I look at my life and realize that everything I have ever gone through has been preparation for what I am dealing with now.

My husband looks at it exactly the same way.

I used to believe I was too emotional, that it was like a curse. I always seemed to be far too sensitive, feel things too deeply. There didn't seem to be any purpose behind this extreme side of my emotions, other than to cause me pain or frustration. I wondered why I was like this. I came from a huge family, and seemed to be the only one with this overblown emotional side. (My parents attributed it to the fact that I was female; assuming hormones were to blame). Why did God make me this way?

I was also ridiculously ticklish. Of course, once a schoolmate "zaps" you in the waist, or between the shoulderblades, then everyone delights in your misery. They can't wait to sneak up on you unaware, and see you jump, drop things, or scream. (That is, they did until I was zapped from behind one day at my locker, and I instinctively yanked my arms back to knock away the offending hands. I yanked back hard and fast, and in the process my elbow accidently struck my unsuspecting tormentor right in the groin. It was neither intentional or controllable - I just reflexibly tried to stop the hands. It did, however, stop all tickling from the male population at my school, instantly.)

When it came time for me to graduate from high school, my father insisted on choosing my major. He refused to allow me to accept a scholarship to the Fashion Academy in Chicago that I had won in a sewing contest. (I have a kind of gift, when it comes to crafts). In addition, he refused to allow me to follow my second choice, and pursue a career in engineering in California. (My grades could have gotten me in to any school I wanted. "Engineering wasn't a girl's field," he informed me. After all, a mere girl couldn't follow in his footsteps.)

I don't know, it goes on and on, with each step of my life leading me here. My point is, that my overwhelming emotions now help me to understand my son's perspective when his frustration overwhelms him. It's not the same thing of course, but it does help me to try to relate and understand on some level. My cursed ticklishness has helped me to understand a little about my son's reactions to sensory stimulation, and how the littlest thing, that doesn't bother anyone else, can bother him at an unbearable level. Again, it's not the same, but it does give me a little bit of insight to his reactions. And even my father's control had an interesting influence on my life. It shoved me into a school that had no electives that I enjoyed, so I sought out psychology, sociology, theology and literature courses for fun, all of which have helped prepare me for my romp through IEP hell, as well as offering a Jesuit background in psychology that has proven to be more effective than any school counselor at my son's school. Those child psychology classes are now proving to be a good training ground. And when I finally broke out of my father's unbearable grip on my education, I chose a major that has served me well, in so many ways.

There's so much more about my life that has prepared me for this moment in time, prepared me for a journey through parenting that few people seem to understand, or could offer assistance with. The emotions, the senses, the psychology and such are just the few that pop immediately to mind because they are the experiences in my life that I now call on for coping skills, as well as my major in Communications, which has helped me to intuitively teach my son better communication skills.

It was so scary to find out after my son's diagnosis, how crucial early intervention is, because he was eight years old when he was diagnosed last year. But on the other hand, many of the things that speech therapist do to improve communication skills were things I did automatically, not knowing how helpful that could be in his developement. We may have been late in starting out with professional therapies, but we weren't exactly starting from scratch, either. My son communicates extremely well. I'm no therapist, by any stretch, but I haven't done too badly for an amateur.

And my husband has been unbeliveably perceptive as well. The times that I can't seem to reach my son, my husband can, and vice versa. We make a really good team. He's had similar kinds of experieces in his life, that also make him feel like he was being trained exactly for this job of parenting our son.

Anyway, I'm really tired, and I'm probably not making much sense, so I better hit the hay. I guess I just feel very blessed, and incredibly lucky. There is a line from the Blues Brothers movie that says, "We're on a mission from God." That's how I feel. I feel like my whole life now makes sense. It seems like all the crap I dealt with as a kid, was preparation for me now. All the pain I endured in my college days reaped in huge benefits in the long run. So many things that seemed like missed opportunities were really better opportunities for what lay ahead. Everything happens for a reason.

My Happy Camper

After a few weeks off, my little guy is back at daycamp. I got a phone call this week, saying that they were having trouble getting Nathan to calm down. They wanted me to tell them how to settle him down. I wish I knew! He doesn't usually get THAT wound up at home. Sure, he gets a little rowdy sometimes, but we can usually calm him quickly and easily. But when he's at childcare or at school, it's another story. He practically climbs walls.

It had rained, so they crammed about 65 kids into one room. Not a good combination. They offered Nathan his earplugs, but he didn't want them. (I don't offer earplugs. I give them to him and say "Put these in."). He got so wound up, he wasn't going to come back down easily. He finally did get talked down, by his aide, who's really pretty good with him. After that, they said he was fine. No aggression. No tantrums. (Hey, I'll take rowdy over aggressive in a heartbeat.)

The following day, he had a field trip. He did very well on that!

And today seemed to be another relatively good day. At least no phone calls, no bad reviews of his behavior.

I'm relieved. I don't know if Nathan can maintain this for another couple weeks, but I have my fingers crossed. Geez, I wish I could take his aide to school. This college kid has more common sense than any teacher I've met at Nathan's school. And he does this with an unmedicated Nathan. Seems like if you just give my kid a break, he'll give you one as well. All he really needs is someone who can offer a good dose of patience, and he'll thrive.

Funny I should say that. I'm not known for being a patient person. I guess Nathan just keeps teaching me.

Teach your parents well,
Their children's hell will slowly go by,
And feed them on your dreams
The one they picked, the one you'll know by.

Don't you ever ask them why, if they told you, you would cry,
So just look at them and sigh and know they love you.
Crosby, Stills, Nash & Young, Teach Your Children

Waving the Flag

For Flag Day, Nathan was required to write an essay for school, about what the flag meant to him. The teacher then took all of the submissions to the local mall, and entered them in to the local essay contest for adults and children. Since the little guy wasn't so crazy about having to write an essay for school, I agreed to write an essay too, and enter it in the contest. It didn't win of course, but I thought I would post it now for a kind of 4th of July greeting.




What the American Flag Means to Me

I can look upon our nation’s flag, and see the intended meaning behind the colors and shapes used in its form. I can see the meaning in the stripes, representing the rays of the sun, and representing the original thirteen colonies. There are the stars, pointing toward Heaven, reminding us of the new constellation in the sky that was intended by the white stars on the blue field, one nation under God. It reminds us of the fact that we are a fledgling nation; new, young and unique. The colors themselves also have meaning. The red symbolizes valor and hardiness, and serves to remind us of the blood that was spilt, and the lives that were sacrificed, in order to win our independence, and to maintain our freedoms. The white is for innocence and purity, symbolic of the pure ideals in our Constitution, and the hope that this promises for our future. The blue symbolizes justice, vigilance and perseverance, and reminds us that we are strong and we are free, and we will prevail. The concept of the stars and stripes design was inspired by the Washington family coat of arms, which consisted of two red stripes over a white background with stars above it, and it continues to remind us of those initially responsible for our nation’s independence, and the army which originally fought for its existence.

There are all these implied meanings that went into the creation of the flag, and symbol of our land. Yet over time, the flag has grown in meaning. For most of us, the flag stands for freedom, and everything that the Constitution of the United States represents. It means we have the opportunity to reach our own potential.

The flag stands for this beautiful land, filled with mountains and rivers and lakes, prairies and deserts and glaciers. It represents our homes. It represents our way of life. It represents our people; the melting pot of races, religions, and ideals.

Our flag stands for every serviceman that has proudly served his country, and every person who has died defending it. It represents the colonists that gave birth to this dream, and the soldiers today that continue to defend its ideal. It means a country pulling together after 9/11, wearing flag colors, and displaying them on their homes and automobiles. It demonstrated our unity, our dignity, and our ability to pull together. It represents our strength as a people, and our power as a military force, and our ability to overcome.

The flag can represent our humanity, and our practice of stepping forward to help other countries in need. It can represent our belief in the ethical treatment of all people. We have a responsibility to other people and nations, to do what is right, to protect the principals that our country stands for.

We can also look upon our flag as a symbol of success. We know there is a flag flying on the moon, as a symbol of our nation’s success, and creativity, and ingenuity. It represents our pride, our collective ability, and the awareness that we each have the potential to succeed and achieve.

The flag means more to me than a series of colors and shapes that we use to indicate our country. It stands for the American Spirit and our strength, our servicemen and women, and our home. It represents the place and the people that call to our hearts, when we are away from our shores. It represents hope for the future, the opportunity to achieve our dreams, and the belief that how we live is the very best way to live.


Happy 4th of July,

Joni

Happy 4th!

What a nice day. I took today off for an appointment, and just took it easy with Nathan all day. A little shopping, went for ice cream, just a pleasant day.

Happy 4th of July!

(That's obviously an old picture, but he just looked so cute and patriotic there, with his red, white & blue hat and clothes, that I just couldn't resist...)

Be On The Lookout

Just the kind of phonecall that you don't want to hear...

On Thursday, I received a phonecall at work from my son's daycamp. They said there was an armed robbery in the vicinity of the camp, and the robber escaped on foot in the direction of the daycamp. The police were there, and the camp was under lockdown. They gave me very specific instructions for how I was to pick up my son, and gave me the option of picking him up then, or at the usual time, assuring me the police would be present the entire day.

Yikes.

I was not only frightened for his safety, but also for his ability to handle the drastic change in his schedule, and the idea of 65-70 kids being cooped up in a small building (room). Talk about your sensory overload...

Work was very understanding, and allowed me to go check up on him, with warnings to be careful and not put myself in danger. I didn't care about my safety, I just needed to know my son was okay. But it's nice to work for a place that gives me so much flexibility during work time.

I went to the daycamp, after following their inconvenient, yet understandably necessary, steps to get in. They weren't kidding about the police being there. So were all the big shots in charge of the camp. There were tons of police cars, and I don't know how many undercover cars (I saw a woman with handcuffs dangling off her belt climb into a plain looking car). The parking lot was packed with police. I was awed, and relieved. They stopped me before I could even get close to the building, and we went through more secuity measures. Finally they told me they were going to bring my son out to me. I didn't want to do that, I wanted to go in and just see if he was alright. They finally agreed to allow me in.

I walked into the building, which was packed with about 70 kids, covering every inch of the floor. The volume was deafening, with the typical happy squeals of playing children. While everything looked safe and sound, I was instantly worried about what that level of noise was doing to Nathan. It took me a little while, but I finally located him among the sea of kids. He was fine, though I could tell he was getting over-stimulated (but not to the point of meltdown yet). I whipped out a pair of earplugs (I always carry a bunch in my purse), and handed them to him. He smiled, thanked me, and instantly put them in. Right then, his aide walked up to me, and informed me apologetically that he had offered to get Nathan his earplugs, but Nathan declined. I just smiled and told him that I didn't ask him, I just handed them to him. (Sometimes it's best not to offer the option). I also assured the aide that it was fine. I just knew this was going to be too much for him, and would cause sensory overload. It's one of the reasons I came. I stuck around for a while, to reassure myself that all was safe, and to make sure Nathan wasn't going to melt down. It gave me a good opportunity to talk with his aide, who seems to already have a good feel for Nathan's signals, and how to handle him when he's over-stimulated. The guy is really good with kids. Once the camp was allowed to go outside again (with police escort), and continue with their regular scheduled activities, I left and returned to work, leaving Nathan there. At that point, the place seemed as safe as Fort Knox. And Nathan looked out of the woods, so to speak, with any sensory overload. And none of the kids seemed frightened, or even aware that anything out of the ordinary was going on.

We returned to the daycamp in the evening for the family night. The police were still there! I thought this was awfully impressive. By this time, the thief that had inspired the lockdown had moved on and hit two other locations, several miles away, and was obviously no longer in the vicinity, yet the police stayed to be sure, and to reassure the families. I later found out from Nathan that the police gave the kids talks about "stranger danger," and they also talked to the kids about what it was like to grow up to be a police officer. He thought the whole thing was really neat. Gotta admit, I did too.

So as frightening as the phone call was, it was so cool to see that they would handle things so well in the event of an emergency, and that they would go above and beyond the call of duty (both the camp, and the police), to keep the kiddies safe. It gave me a whole new sense of security, where Nathan was concerned.

And Nathan had a really good first week at daycamp! He was awarded a certificate, declaring he was the "Game King," due to his knack of winning every game he played. (He was particularly proud of slaughtering the counselors at checkers, LOL!) No major meltdowns, and he did very well most days. (Too bad his aide couldn't accompany Nathan to school next semester...)

The summer is looking up!

Don't Get Your Hopes Up

I guess it was all too good to be true.

We had just started Nathan on a new medication Wednesday morning. Dh and I decided not to share that information with the school. They have made it very clear that they have a strong bias when it comes to medication, and we feel it influences the kind of feedback we get. So we figured we had a week where we were only giving meds in the morning, before they had to be given in the middle of the day as well, so we wanted to see how he did for one week, without anyone knowing that a change had been made.

Wednesday I got a call from the school nurse. My heart stopped when I heard her voice. I feared that Nathan might have had some kind of reaction to his medication. (Why else would she call?) She told me Nathan had had a meltdown, and had been sent to the office, and she asked what kind of new medication he was on. I told her, believing that if a school nurse asks me, there must be some medical need to know this information, right? Wrong! She then informed me that his special ed teacher heard Nathan say he was on a new med, so she instructed the school nurse to call me to find out what kind it was!! GRRRRRRRR!

I am so tired of being lied to and manipulated by the IEP team.

While talking to the school nurse, I questioned her about Nathan's meltdown. I was very worried about him. The nurse could tell me absolutely nothing about what happened, why it happened, what was done about it, etc. However, she told me that she was sure the special ed teacher would fill me in because "she's good about that." Yeah right. I never got a call back, no note, no phone call, nothing. I was TICKED. She can sure call me when she wants to talk about drugs, but when I'm concerned about my son's well-being, that isn't important enough to warrant picking up the phone!

I can't believe she would be so bold and so manipulative, to not only insist on knowing the meds my son takes, but to have the school nurse call to find out is really despicable.

This got me angry enough to shoot off an email to the woman's boss. I complained about her calling to find out about the meds, about the nurse going along with it, about how we've been interrogated through numerous IEP meetings about what meds he's on and what doctors we've been to and what the doctors say and what we are going to do next regarding doctors, etc. I informed him that I will no longer discuss any medical issues with the school staff unless there is some kind of medical urgency, and then it would be with the appropriate staff member (like the nurse, not the special ed teacher), and that any medical information I provide will not be shared with anyone on the staff who asks about it. I also said that if anyone had any medical opinions or concerns about my son, to put it into writing and I would submit it to his doctors, but I would no longer discuss any of this with them.

I further complained about the fact that I had been very forthcoming up until now, with all medical information, and I do not appreciate their efforts to lie to me and manipulate me to get even more information. I complained about the lack of professionalism I've faced, and the violations to my son's privacy and his rights.

I complained about the fact that no one could call me back and let me know what happened with my son's meltdown. I said that my son had complained of a severe headache numerous times in school, and everyone ignored him. He shouted to kids to be quiet because his head hurt, and they ignored him. No one offered to assist him. No one noticed when he backed away from his desk. No one even came to him until he had thrown papers on the floor, and that was because they wanted to remove him from the room. No one showed him his new "wellness chart" that we all worked so hard to create (It's a scale that shows emoticons to represent when he is happy all the way up to major meltdown, describes how he feels in each stage, and gives him possible ways to calm himself). Nathan went through stage after stage, escalating, but no one bothered to acknowledge his signals. You would think since we just created the chart that it would be fresh on their minds, but they didn't pull it out until Nathan was in the hallway kicking lockers. Great timing. Had they showed it to him when he first started complaining of headaches, he might have completely avoided the entire meltdown!

But no, why bother using any of the de-escalation techniques? Drugs are the only real solution, right?

I also complained about the fact that they are continuing to send home class work that he didn't finish in school as homework. So this is on top of his regular homework. For the weekend, we were supposed to write a report on New Jersey, another on volcanoes, write an essay about the American Flag, and create a monument to a person or idea. Oh yeah, and the handouts that were passed out as well. Oh, and the daily reading assignment. And studying for his spelling test. And they're supposed to be REDUCING homework, not increasing it! (I blew off the volcano report, since they didn't bother to tell me about it during his suspension or immediately after his return.) Who cares that this was discussed repeatedly in his IEP meetings as being a major contributor to his meltdowns? And even after insisting in the last five IEP meetings, they still won't put a time limit on his homework! They just say they'll send home "less," but it never happens.

I told the special ed director that my trust and my faith is shattered. I don't believe they are going to even look at the IEP, that we did all this work for nothing. They want to just blow off all the accommodations, blow off all the charts and recommendations for how to make my son successful in school, and wait for us to medicate him to the level they want so he's easy to teach. Or maybe they think we'll stumble across "the magic Autism Pill" that will turn our son from autistic to neurologically typical, instantaneously...?

I don't know if my letter will do any good, but I tried. Now, I'm done waiting for them to do the right thing. These people will be called to task.

Don't get me wrong. There are some people I've been dealing with who really do care. One is his Speech Therapist. She's fabulous. She's made real progress with Nathan, socially. The school nurse was manipulated into calling me, but I do like her, and I do think she really has a good understanding about what Nathan goes through, and some valuable input into how to help him. I still want to cheer every time I think of her telling the IEP team that she doesn't think Nathan has ADHD. (She's right, by the way). The Autism Team has been great. They offered real solutions to help Nathan, all of which I think could work, if only the school would actually implement the ideas. And the special ed director (the special ed teacher's boss) seems like a very nice man, who truly cares about helping kids, and would bend over backwards to make it possible.

However, I do think the special ed teacher is a terrible choice as a case manager for my son. She only wants to focus on medications, and how to deal with my son once a meltdown occurs. She doesn't have any interest in avoiding a meltdown, or de-escalating one, and dismisses any advice about what triggers them She is deceiptful and manipulative. And she has a definite bias against my son; believing he should be removed from mainstream classrooms, regardless of the fact that he's demonstrated he can be successful in them, because he melts down when she ignores all the things that can escalate him. In her opinion, if he melts down, it's because we need to give him a bigger or better pill. Period. And if we won't, she'll just kick him out of mainstream class because he's too disruptive. She doesn't have to work at helping him succeed then. Until her boss came to the IEP meetings, all she wanted to know is what WE were going to do, to "fix" Nathan. What doctors, what drugs? She dismissed me when I spoke of why Nathan was having meltdowns. Too much homework? Pah! 30-40 hours of homework a week shouldn't have anything to do with it. Sensory overload? No! We don't believe his sensory issues have anything to do with his meltdowns. (!) His dog died? That wouldn't do it. We moved his desk? Why should that trigger a meltdown? Oh, it's happened before? Well, I still don't think that has anything to do with triggering a meltdown. Everyone ignored his signals that he was getting overloaded? His signals are not readable. No one gave him any warning of changes or transitions? He doesn't need that much warning. Okaaaaaaaay, so you're going to ignore all input about what's causing his meltdowns, and then you'll yank him out of mainstream class when he has them. What a peach.

I keep telling myself not to worry about this all summer, but I suppose I will anyway. At least his new teacher sounds very encouraging. I have to be excited for him to have a teacher who actually wants to take a personal interest in him, since she knows someone with autism. And the Autism Team has been enormously helpful. They will give a sensitivity training in the beginning of the new school year. (I wanted to do that this year, but the IEP team refused, until the Autism Team recommended it.) And the IEP has been re-written to have more specific goals. And the special ed teacher's boss has been involved in the meetings, which really helps. And the Family Support Director from Easter Seals has been fantastic in getting things on track. Yes, there have been a lot of positive changes and steps taken.

And then there's me. I'm done playing "nice." I'm done hoping people will do the right thing, and I'm going to demand it. I'm not a bad person, and I don't have unrealistic expectations, and I'm not asking for anything outrageous. I simply want people to treat my son and my husband and myself with respect and dignity. And to do their jobs willingly, thoroughly and ethically.

Not so much to ask, really.