All Things Hold Together

I am so overwhelmed I cannot even put it into words. I did not realize how much I was tuning out The D’s problems and not dealing with them. I mean, I was dealing with them, but more as if he was just being a bad kid. Now I realize that this disorder gives him a completely altered way of seeing the world and dealing with life. Absent learning to adapt to his condition, he does act like a bad kid. But he is not. The changes we are making in our approach to parenting are starting to work already. As much as I abhor schedules, the schedules are helping. Standing in as his substitute brain when he is frustrated is starting to help. He went all day today without stomping. You have no idea what a big deal that is. To put it in perspective, he was stomping so much, he made the light in the downstairs apartment fall down last week! Thank God that the property manager was understanding.

I know that things are going to get better. They already are. Most importantly, I enjoy being around my son again. He has been so mean for so long that I all but gave up hope that he would ever be nice again. For 2 years he has acted like a mouthy teenage punk, but now he is just a little boy again.

The downside is that this is exhausting me. I am on duty every second of the day. The only reason I am online right now is that he is at a meeting at church. The other two boys are so quiet and independent by comparison. Even Little E, who is only 4!

I am so physically and emotionally wiped out that I started crying when I read, “ADD is an ‘invented disease,’ it is a ‘media-myth’.”

I Googled “homeschooling” and “ADD” and “ADHD” to find out more about what other parents do with homeschooling ADHD kids. I found that gem on Home Education Magazine’s web site. I have not read the articles linked there yet. I was crying too much.

Why do people think they know everything about everybody else?

This is not a made up condition!!!

In all my years of political blogging and dealing with complete idiocy, I have never wanted to call anyone an asshat until just this very minute.

After everything my son has been and is going through, and the difference in his mood, attitude, and behavior since starting the medication, you cannot convince me that this is a myth.

This is not just a kid who won’t sit still or doesn’t pay attention. He is not difficult to teach or slow or behind academically. All the judge-y know-it-alls think ADHD is all about drugging active kids to get them to sit still.

No. It isn’t.

True, The D does not sit still. Neither do my other two boys. I read to them while they are hanging upside down or rolling on the floor. I homeschool. THEY DO NOT NEED TO SIT STILL!

This is a kid who is unable to process through his emotions because his brain won’t sit still. So, he reverts to primitive behaviors, like stomping, yelling, and hitting.

He had no way to process the things that sent him into a depression a year and a half or so ago. And no one had any idea that this disorder was affecting him. That is why therapy was not making things any better and everyone threw up their hands when they could not help us.

But, you know, I am sure it is just an invented disease or a media-myth.

And I am even more sure that people are insensitive nitwits without a clue.

Too bad that doesn’t stop them from talking typing.

So, the D has been taking ADHD medication for a week now. I have noticed a positive difference. We still have so far to go.

I am not sure if more could be accomplished by a higher dose - he is taking a very small dose - but I am not sure if I want to take chances with it. We have a follow-up with the nurse practitioner who prescribed it Wednesday, so I’ll discuss it with her.

I am not sure that he really has anything else going on (like the severe mood dysregulation that was mentioned during the preliminary diagnosis) that cannot be attributed to the ADHD, especially since it went undiagnosed for so long. Man, there is a lot more to that than I thought. I was under the impression that it was just inattentiveness and hyperactivity. There is much, much more. (I want to post more about that.)

I was kind of upset when I realized that the public school should have caught this during the 3 years he was there. They should be trained to spot the early signs.

Instead, it went so long that his behavior got to be really bad. Now he has so much work to do before he will be functioning at his age level. (As do we.)

I am not going to dwell on it, though. I have more important things to deal with.

Like sleeping! I am so exhausted from dealing with all this.

But, it’s great to start to see the little boy I love coming back!

So, we met with the Nurse Practitioner at the pediatric psychiatry department for our follow-up visit about The D, last week. I haven’t written about it yet because it is just a lot to deal with. There is such a stigma surrounding mental illness and it really took me some time to accept it.

To some extent, I already knew. A while back, Bob started using the term “special needs child” to describe what I was dealing with, on those days when I was feeling like a failure for not getting enough done.

We already began the process of accepting that we could never expect “normal.”

Anyway, the diagnosis is Severe Mood Dysregulation, with ADHD and ODD (oppositional defiant disorder).

SMD is very new. It does not even have diagnostic criteria in the DSM IV (which is the book that psychiatrists use to diagnose mental disorders). It is an area that is being researched right now, so she was able to get us in with a really good doctor, who is going to help us with a behavior plan. He has a lot of experience working with families of children with ODD to develop strategies for managing behavior.

The ODD was absolutely no surprise. I have known that he met all the criteria for years. Honestly, I thought it was a made up disorder to describe children who lack structure. Well, I was wrong. We do not lack structure. And I have two other children who do not act this way. The D really has problems that require a different approach.

ODD is treated with behavioral therapy, but he also has ADHD. I, along with the teachers he had in public school, thought that he did not have ADHD because he can and does focus on school work.

As it turns out, some ADHD children can become hyper-focused on things that interest them - like video games, etc. The D just happens to be interested in reading and school work.

She prescribed a stimulant for the ADHD. It is supposed to calm his mind down enough so he can process things. The D often wants to do the right thing, but he says that he can’t help it. He is excited to take the meds, hoping that he will be able to control himself better. That is good, but also sad. I can’t imagine how that feels for him!

He starts tomorrow. We wanted to start on a weekend, in case he has a bad reaction. I want Bob home and a car here. (I don’t have a car when Bob is at work.)

Last weekend, we went away, so we couldn’t start it.

The medication was the hardest part for me to accept. I became a mom around the time that it came out the kids were being over-prescribed Ritalin. You know, adults just couldn’t handle rambunctious boys, so they gave them medication.

Well, I was always anti-medication. I want to let my boys be wild. I homeschool for Pete’s sake! They do not need to sit still all day. Or at all, really.

But that is not what this is. This is a boy who has no ability to calm himself - even when he wants to. He has over-the-top reactions to every mood - happy, sad, angry, you name it. He wants to control himself, but lacks the biological means to calm himself down.

I don’t know what the medication will do, but I am hopeful. I know that there is a lot of work to be done, but this could help calm things down enough to get that work done.

So, that’s what is going on with The D. I will update you about how things go. I also want to share how this has helped my husband and me to lean more on God. But that is another post altogether.

A while back, quite a while, unfortunately, Landel Bilbrey graciously sent me a copy of his book, “Sentinel: City of Destiny” to review on my blog.

With apologies to Mr. Bilbrey, it took me far to long to write this review.

Sentinel: City of Destiny is a fiction story written for boys ages 8 and up. Its purpose is to illustrate to them “foundational character traits that God wants to see in a mature man.”

The Four Keys of Mettle (Manhood) are Vision (Proverbs 29:18), Courage (Joshua 1:9), Integrity (1 Chronicles 29:17), and Service (Luke 10:27).

Throughout the book, there are paraphrased scripture references, which are worked into the story under the fictional name “Logos.” The Logos reference can be decoded to locate the supporting scripture verses quite simply.

I thought it would be interesting to find out what a boy in the intended age range thought about the book. After all, that is who will be reading it.

So, I asked my 11-year-old son, The D, to read the book. Then, I sat down with him and asked him to share this thoughts about it.

What was Sentinel about?
It was about a quest for seeking Sentinel and the temptations will try to pull you away.

What did you like about it?
It was a good action book with lots of cool things in it.

Was it obvious to you that Sentinel was a metaphor for something?
Yes.

What do you think it was a metaphor for?
Seeking God.

Did you learn anything from this book?
That there are lots of temptations that will try to pull you away from seeking God.

Didn’t you already know that?
I did not know there were that many.

Did you decode any of the Logos passages?
Yes.

What did you think about that?
It was cool. It’s cool that he came up with that.

Would you recommend this book to other boys your age?
Yes.

What about boys that are not Christians?
I think they would enjoy it, too.

Is there anything else you want to add?
No.

To be honest, I was rather shocked to find out that he did not realize that there are so many temptations that stand in the way of seeking God.

I think that is an example of why books like this are good.

My husband and I try to instill biblical principles, as does our church, but it really does take other influences as well. We can never be sure exactly what will take root in their minds and hearts.

Not only does Sentinel provide a “good action book” with a great message, but it also includes resources in the back of the book for further discussion and reflection.

Overall, I would highly recommend this book.

I have not finished reading it, but when I do, I will also post any further thoughts I have.

For more information, visit the Bridgemaker Book homepage, where you can read the first 6 chapters in PDF.

I was thinking the other day that it has been a long time since I updated about The D’s situation. That’s because there is nothing to update, at least in terms of getting him in to see a psychiatrist.

Back in November, I said that the really good psychiatry department at our medical center had a 6-8- month wait list, so we were going with another guy who could get us in much sooner.

Well, we decided that we should wait for the office affiliated with the medical school for a variety of reasons, not the least of which is that they will be up-to-date on the latest information.

So since November, I have been dealing with calls back and forth to that office. They require a referral before they send you paperwork. And they require paperwork before they will put a person on the 6-8 month wait list.

This is how it goes.

Intake worker: We will call you when we get the referral.

(Two weeks later…)

Me: I didn’t hear from you. Did you get the referral?

IW: No. Let me call your doctor and I will call you back.

(Two weeks later.)

Me: I am sorry to be a pain, but I have a child here who needs help and I haven’t heard back from you.

IW: I didn’t get the referral.

So, I call the doctor. She sent it in November. And again when the intake worker called. And again now that I am calling.

I call back.

Me: My doctor faxed it…three times. I know you are busy, but I need to get my son on that list.

IW: I will send you the paper work, so you can get that going while I straighten this out.

Here I am two weeks later without the paperwork.

The office is across town. I could have driven to my doctor, picked up the referral, driven to the psychiatrist, filled out the paperwork, and gotten on the darn list how many times since November??

And people wonder why so many kids fall through the cracks. Even with very involved parents, a child cannot even get the help he needs.

Fortunately, The D is doing great. He is really becoming more self-aware and we are becoming more aware of his needs. Bob and I can see his mood and behavior patterns more clearly and be accommodating. The D is getting better at understanding how he feels and seeking out acceptable ways to cope.

There have been no violent out bursts at all in the past couple of months. No throwing things. Temper tantrums and stomping are rare.

This is the longest period of time that things have stayed “good” in a year-and-a-half.

He is still challenging to deal with, but the intensity is dialed down dramatically.

I cannot imagine what it would be like to deal with this referral fiasco, if I was still dealing with the out of control chaos and violence that I was over the summer and early fall.

We are back from visiting my husband’s family for Thanksgiving. It was wonderful, but it always is. I love his family.

The kids were great. On Wednesday morning, after a dreadful first few hours, The D decided that he was tired of being angry all the time and we have had an amazing several days, for the most part. I am resisting the urge to think about the fact that it will likely not stay this way forever and am trying to just enjoy being a “normal” family for now.

I never got a chance to post about the results from his doctor, but for the most part, there were no results. She said that normally there are more people filling out the questionnaires, ie teachers, so the results were inconclusive. There was concern about violent behavior, hyperactivity, and depression, based on my answers, so now he needs to go to a psychiatrist for an evaluation.

We live in the same city as a medical college, so I called there, but they have a 6-8 month waiting period. The pediatrician recommended someone who can get us in for the middle of December, so we went with that.

He said there would be one meeting with Bob and I, followed by two with The D, then another with Bob and I. Hopefully, I will know by the end of January what is going on.

I have more to say, but I need to go lie down. I have a sore throat, complete with little white sores on my tonsils. Fun, fun, fun.

Little E was sick all weekend. He even threw up at the kids’ table at Thanksgiving dinner!

I have to get back to my novel, but I had to share this.

The D is in his room playing his favorite songs really loud on the CD player. In between songs, his voice bellows out something like, “And that was Thousand Foot Krutch. Next we have DC Talk with ‘In the Light’.” Sometimes in between songs, he reads today’s Bible verse, which he selects. It’s so cute.

Ugh, I am way behind on my novel. You can read about that here, if you’re interested. (Yes, I have another blog. I have been holding out on you.) Okay, back to it… Actually, I have to go feed the kiddos first.

Oh, and I have still not heard back from the doctor about The D. I will share when I do. Thanks for your prayers.

“And now for the Mystery Song. Call 802-123 if you can name this song…”

I feel like I am going crazy. My stomach is in knots. I am waiting for a call from the pediatrician about The D. I have been fearing this call almost his entire life. But this time, it is imminent, and therefore more fearsome.

See, The D has some… issues. When he was little, he was very active and, for lack of a better word, aggressive. Only, he wasn’t aggressive in a malicious way, he was just active and clumsy and kind of plowed through other people on his way to get something. Like he didn’t know his own strength and didn’t know other people were there, and didn’t feel it when he bumped something.

The daycare he was in recommended that someone come in and evaluate him there, and my insurance would cover it. She (the evaluator) recommended occupational therapy. And the occupational therapist said that he had sensory processing disorder, which was called sensory integration dysfunction back in those days (eight years ago, when he was almost 3).

She also said that we were lucky because he was exceptionally bright, which is not always the case for children with this disorder, so he would likely outgrow it, in the sense that he would be able to learn how to deal with it. In the meantime, the childcare center, which had another SID/SPD child, learned some techniques that would help the children get centered.

Right before he entered kindergarten, I had him re-evaluated by the OT and she saw improvement and said that he would not need any kind of assistance in school. This was huge. Just a year prior, I had experts telling me that it was inevitable that he would need an aid in school.

That was pretty much the last time we thought about The D’s sensory issues. Each year, he seemed better able to regulate himself. The OT was right; he was learning to deal with it.

He continued to have social issues, though. I worked with him at home and his kindergarten teacher and guidance councilor worked with him at school, and he slowly improved. The fact that he was so bright and so eager to learn new things did go a long way toward mitigating his social and emotional deficiencies, and the fact that he is a really fun kid kept him from being the class reject. He progressed along alright.

Unfortunately, The D had another parent involved, who did not so much have The D’s best interest in mind, unless it was convenient for him. During his kindergarten year, his bio-father decided to come in and out of his life without any semblance of consistency, until he ended up moving out-of-state altogether.

After that, The D went downhill fast. The school recommended therapy, but that did not help much. Things got pretty bad for him.

Things eventually evened out and improved. For first and second grade, he did pretty well, and his first year of homeschooling, he did excellent.

Then that summer, summer of 2006, I made a choice that I will regret until my dying day. I let The D go and visit his bio-father, believing that he had gotten his act together. Big mistake.

The D came home a wreck. He couldn’t even talk about it for months. I mean, like 6 months went by before he even breathed a word about what it was like there.

Apparently, it was just really chaotic. There were no rules. His father’s other three children, a girl the same age as Big E (imagine that), and two boys 2- and 4-years younger than her, are allegedly very out of control. They listen to rap music with bad language (something that for some reason The D is very sensitive to - he even gets upset with me if I swear). And they watch things on TV that are “not appropriate for children,” his words, not mine (bless his heart).

There was inconsistent discipline that ranged from some bad behavior being ignored completely to the opposite extreme, such as the then 4-year-old being spanked several times with a belt for not turning the TV off when told the first time.

And the latest thing that was revealed, yes - more than a year later there are still things trickling out, The D overheard his father on the phone several times getting into heated arguments with people that involved swearing and threatening.

The kid came home a total wreck and has only gotten worse as time has passed.

Then, when our neighbors, who we spent time with every day, moved away to Seattle, his whole world collapsed. He became depressed, aggressive, disobedient, defiant, and just plain awful to be around.

To make matters worse, he refused to go to his councilor. (The one he started going to in K.)

We did start going to a family counselor through the counseling center that was set up by our church. We couldn’t make him go to individual counseling, but we could make him come with us. That has helped, but not enough. He has been in a free-fall for months. There have been days where things begin to look up, but the downward spiral is still in motion.

Then someone suggested that I take him to his pediatrician. I had to bring Little E for his 4-year check anyway, so I called her and told her what was going on. I had no idea that a pediatrician could help diagnose a mental health problem, but I am so glad that someone knew because she has been awesome. And she has the same philosophy about medicating children that I do - she opposes it because of the potential negative effects on their developing brains, but recognizes that there is a very small percentage of children for whom it is necessary and who cannot be helped any other way.

Now, back to the reason I am anxious about her call. She had me fill out a questionnaire that is used in diagnosing mental health disorders in children and it was sent out to be analyzed. She should be calling me today or Monday with the preliminary results and we will go from there.

It has been absolutely gut-wrenching to sit here and wait for the doctor to call and tell me what is “wrong” with my little boy. I have feared this moment for so many years. In the back of my mind, I always knew that it could come to this. Even though we worked through issue after issue with him, and he always got better, I knew that he was fragile.

So, I sit and I wait and I pray that everything is going to be alright. I mean, I know it will be alright, but I don’t know what darkness we will travel through to get there.

This has tested my faith like I never thought possible. I have run to God. I have run from God. I have cried out to Him. I have screamed at Him. I have been amazed that even after I turned my back on Him, even after I selfishly rejected all that He did for me as if it was not enough because He is letting me go through this pain, He is always there to take me back into His arms when I am ready. I am amazed at what a truly loving and forgiving God we have.

The boys decided to get out the digital camera and try to make stop motion films with their Legos.

Here are the results.

From Big E…

From The D…

I decided that I want to talk more about what is happening with my children individually, so that I can come back and read about it in the future - sort of like an online memory book.

So, I am going to add three more categories: Little E Things, Big E Things, and The D Things.