We Need Each Other

I used to have some really lofty ideas about “people who drug their kids to make them behave” back before I had a child with ADHD. Today’s guest blogger, Laura, wrote a blog that touched me deeply. She wisely reminds us to give others not only the benefit of the doubt, but our support as well.  Parenting a special needs child can be very isolating for the whole family. ~ Cyndi

 I have a ‘friend’ who her and her husband are trying to live a perfect life. They have 2 children, a boy and a girl, and they seem to project that everything in their world is clean, orderly, and going as planned. They have the view that if you make a plan, and follow it perfectly, then your children will turn out exactly how you ordered them. The expectation is the son will be gifted in sports, like dad, and the daughter will follow in her mother’s highly organized, academically superior ways.

They are very judgemental when they see other people’s children who are alternative, rebellious, or struggling, they always assume the cause is poor parenting. I saw a crisis coming with my friend. And it is starting to come to full bloom.

What It’s Like to Be A Child with ADHD

Celebrate! ADHD: What It’s Like to Be A Child with ADHD – CURLYGURL’s MySpace Blog | Cyndi–s Jewels

May 19, 2006 – Friday 11:52 PM

From the Heart of a Child… Dear Mom and Dad, I want you to know what it’s like to be me. My brain runs like a washing machine powered by a Ferrari engine. It runs all the time and it runs fast, churning and tumbling ideas like shirts and pants and socks mixed together.  I can be talking to you and having another conversation running inside my head. I can be in class listening to the teacher, but be fully engaged in a daydream inventing something with my LEGOS. You know how I sometimes repeat questions? It’s not that I didn’t hear your answer. It’s just that in the second between the time I asked and you responded, I went somewhere interesting in my mind. And I didn’t pay attention to what you said. Sometimes I have so many thoughts swimming inside my head that I just blurt things out because I’m afraid I will forget them.

ARTICLE: Growing Up Gifted with AD/HD – 2006

ARTICLE: Growing Up Gifted with AD/HD – CURLYGURL’s MySpace Blog | Cyndi–s Jewels

March 7, 2006 – Tuesday 11:50 PM

ARTICLE: Growing Up Gifted with AD/HD Category: Life I’m twelve years old and for as long as I can remember, I’ve had opposite sides to myself. I’m told that I’m “gifted” — very smart and creative. But I also have to work really, really hard at things that seem much easier for other kids, like memorizing and paying attention. Here’s an example: In math and science and in art, I’m quicker at figuring things out than other kids. Like when my teacher tells us a new way to subtract fractions, it seems obvious to me and not to other kids. But when I’m trying to listen to someone talking or lecturing, my mind starts to wander. Link to Full Article

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ADHD Perspective: my name is Wild Child… – 2006

This is a personal narrative from my son, describing his ADHD.

March 6, 2006 – Monday 10:35 PM

My name is Wild Child and I am nine years old.  I go to [ABC School].  I am in 4th grade and I am in Mr. Homeroom’s classroom and I have Mrs. Gifted for reading.  I am gifted and I have ADHD.  My ADHD makes it really hard for me to remember things and pay attention.  It also makes it hard for me to sit still.  I take medicine for my ADHD.  When I take my medicine, I feel like regular me, but kinda tired and not so excited.  When I don’t take my medicine, I feel really excited about everything, and I feel jumpy and I want to move a lot and stuff like that.  I like taking my medicine.  I feel like I’m getting a whole lot better grades than I did when I was in second grade and I didn’t know I had ADHD; it helps me sit still in class and pay attention a little better. Sometimes when my teacher is giving directions, I look at him while he’s talking but then my eyes start drifting off to something else and then my brain starts thinking about that thing.  One day while we were talking about math, Mr. Homeroom was teaching us about the problems for that day, and I looked at one of the math problems, a multiplication problem, and I started staring.  Then my brain started reading the numbers backwards and thinking of different multiplication problems and I wasn’t paying attention anymore.  I didn’t figure out the answer, so when Mr. Homeroom called me I didn’t know the answer.  After that Mr. Homeroom told me to go back to the thinking table.  I think I was in trouble for not paying attention.

Heart Failure, & other news

So for Valentine’s Day, Daija gave me heart failure. I was fixing dinner, Halle was doing her chores and Tyler had been outside, and was coming in and out of the garage to get various toys. I should have known something was up when Daija wanted me to help her put her monkey back-pack on. While Tyler was in his room, and I was in the kitchen helping Halle with sweeping, Daija opened up the garage door. Now, this would normally be no big deal because she was just looking for Tyler and wouldn’t have gone any further than where he was. But, Tyler wasn’t outside and in the process of opening the door, Daija let Ramie out. Ramie does love to sneak outside for a little jaunt, and if you follow her she’ll run for an hour but leave her alone, and she’ll be back in 20 minutes… so Ramie took off for her cruise around the neighborhood. Daija followed her. So I’m still in the kitchen, and had just asked Tyler, who had come into the kitchen, where Daija was, when someone pounded on my door. The mailperson, recognizing Ramie from the backyard, asked me ‘Do you have daughter?’ I knew what was coming next… ‘I just saw her following your dog.’ Now, why the lady didn’t take her hand and lead her in our direction I don’t know. I took off running and caught up with Daija and Ramie who had crossed two or three neighborhood streets, nearly two blocks from the house. I asked, breathlessly, ‘Daija, what are you doing?’ and she calmly pointed at the dog ‘Ramie go.’ It took some doing, but I convinced her that Ramie would come back but I needed Daija to come home now. Thank God Ramie headed back into our housing development and not for Southern Avenue. I am kinda glad that I’ve gotten the lost child out of the way early this year. I shouldn’t lose another one until 2006.

Oh, and I flubbed the tooth fairy duties. I forgot to leave money under Halle’s pillow Monday night. Tuesday, I told her that because she lost her tooth so late in the evening (right before bed), the tooth fairy probably just couldn’t get it on her schedule that quickly. Well, while Halle was brushing her teeth, Tyler shook some change out of his bank and left two nickels and seven pennies under her pillow, and then led her back in there to show her where it was. She came running into my room all aglow over her 17 cents (little does she know the going rate for a tooth is now a dollar). I was a little freaked out until I asked how she found the money and she told me ‘Tyler showed me’ My heart just welled up – I have never fessed up to him that any of the gift giving icons aren’t real. It was so sweet to realize that he plays along not only when it comes to himself, but also to create the magic for his sister. Of course, he pocketed two quarters and tried walking very carefully so they wouldn’t clink… hoping I’m sure to buy a soda or some candy at school. How very un-tooth-friendly of him!

So, updating on me… I’m good – time will have to tell on the meds, though. Now that I’m off the cough medicine with codeine, I’m coming to realize that at this dosage, Strattera makes me sleepy, occasionally dizzy, and slightly nauseous for several hours after I take it…. the other week I thought it was the cough medicine and/or antibiotics I was taking (I started that stuff the same week I started the 60mg). Wednesday night, I did what a lot of people do, and switched to taking them before bed instead of first thing in the morning. I’m going to have to see how that goes… but if the sleepiness continues in the daytime I’ll have to try something else. I was literally asleep (well, dozing) at my desk for almost an hour yesterday, sitting straight up. I feel much better today, so we’ll see. I’d really prefer to stay on Strattera if taking them at night does the trick; my only other options are stimulant meds and I can’t get a controlled Rx refilled; I would have to go to the Dr. to get a new Rx every month. I already have to do that for Tyler and it’s a PITA. And while the Strattera hasn’t totally changed my life and made me super motivated to do ‘boring’ stuff at work, or house work at home, it has helped me be able to keep my attention focused a little better in ‘low stimulant’ situations (like sitting on a 20 minute conference call where I only need to participate in about 2 minutes of it throughout the call). I have noticed some other really positive side effects that I’m not sure I would get from a stimulant med, since Strattera has similar affects as an anti-depressant (this per the psychologist). One of the common traits of ADHD is people tend to miss social cues. I’ve come to realize that Ro makes dead pan comments that I used to get really irritated by, and now I realize he’s joking so I rib him when he says this stuff that used to really bug me and it’s taken some old tension out of our relationship. I’ve also realized that I have been unfair in the past in regards to him helping. Admittedly, I do think he should help more than he does, but at the same time, I had a tendency to discount anything he did do to help, because it wasn’t the way I do it or it wasn’t what I considered a priority or what I wanted done. For example, if I leave the bed unmade, that doesn’t bother me. However, if he leaves the bed unmade, or makes the bed but the cover is uneven, or pulled to high up, that would bug me. And I would get my panties in a twist with a ‘if you’re not going to do it right don’t do it at all attitude’ and remake the bed. Now, I’m just happy that he makes the bed when he gets up after I do and I make sure I make the bed if he gets up first. I still notice when he makes it that the comforter isn’t straight, and that the bed skirt is lopsided from him shoving the mattress, but it doesn’t bug me and I don’t feel a need to ‘do it right’ or comment on it not being right. I’m just glad he made the bed. And when he gets the kids fast food, I don’t get my panties in a bunch because it’s not the healthy food I’d prefer they eat or because I had planned something for dinner, I just recognize that he was trying to give me a break from cooking. And he’s started checking with me to make sure I don’t have something planned for dinner (another thing I’d get pissy about… I’d get home and the kids would have eaten greasy old burgers, and I’d have thawed meat that would go to waste).

Strattera: Day 3

So on day three of my initial dose (there are three doses to start with to get you to what the minimal optimal dosage should be; it’s a gradual buildup and you are to take each one for 4-7 days. I think I’m going to be conservative and take each dose for the full seven days). I don’t feel ‘different’ like I did yesterday and Monday, I think I am ‘adjusting’ to the dosage I’m taking this week, but that may also have been some caffeine withdrawal, since I had to cut back the caffeine to avoid it interfering with the effectivity of the Strattera. Not a lot that I said to Dr. Thomas seemed to shock him, until I divulged how much diet coke I drink. I think the last few days I’ve probably had no more than 1/3 of what I usually drink. Finding that lime flavored water is really saving my behind… drinking the bubbles kinda gets me over the craving. I also usually walk down to the cafeteria to get ice for it, which takes care of the times I would go get a drink or snack just to walk away from my desk for a few minutes.

And, I’m on my call as I type this and I have thus managed to respond to two inquiries without being prompted a coupla times 🙂

Tyler’s Dr. Appt

Today we met with Dr. Shoptaugh and discussed Tyler’s sudden drop in appetite and what is probably rather minor bouts with being unable to fall asleep, as well as my big concern: He is beginning to express obessive or paranoid thoughts that no one likes him, that everyone picks on him, etc. He and I have talked it through, and I’ve also spoken with his teacher and the staff at his after school program, in addition to doing a little observation on my own. Tyler is far from ostracized, and no one else has noticed any kind of major conflict. When I talk through a situation, it often boils down to the fact that he had a relatively minor conflict with ONE individual, but to hear him tell it, his whole class ganged up on him. He also suddenly became fixated on a scary story he’d heard at his after school program in October, and came to me several nights because he was afraid to be in his room. He has never in his life been afraid of the dark, and although we reasoned out several times that ‘RedRum’ was just a spooky story, this lasted close to a week. Since Tyler is at a higher risk for depression and other mood disorders, I took that pretty seriously, especially when his dad reported no insomnia, fears, or problems with appetite over Tyler’s (unmedicated) winter break.

Some good news first: Since July, Tyler has gained 1.5 pounds, which is a good gain in that time frame. Not huge, but substantial and he wasn’t at a flatline or losing as I’d feared. Dr. Shoptaugh thinks that the eating/sleeping problems are definitely related to the Adderrall and scaled his Rx back from 20mg to 15mg. I talked to her about the (very preliminary) research I’d done on dopamine/norepinepherine balance/imbalance and coupling stimulent meds with a non stimulant, like Strattera. She was familiar with the practice, but said it was very, very new practice that still had kinks to be worked out (like everything else LOL). She said that out of 30 patients, she hasn’t had one stay on strattera. She’s also not sure that his obsessive thoughts/fears are definitely related to medication. She wants us to take Tyler to a behavioralist. She does want to work with us as far as balancing out these chemicals, she’s just not sure strattera is going to be the solution, and that she wants to work in conjunction with someone who specializes in this area. I was once again so impressed with her as a medical professional; I wasn’t sure she would be comfortable with the med combo since I know she’s not a strattera advocate. I was really prepared to have my inquiry squashed and find myself back to trolling the listings for a psychiatrist. So even though she wasn’t comfortable making that Rx, I definitely didn’t feel like I was on my own.

Unfortunately, there are only two “behavioralists” ; Dr. Melmed of the Melmed Center (which I’ve heard of, they offer classes for parents, teachers, and kids in addition to counseling), or Dr. Kessler of the Arizona Child Study Center. Thankfully, Dr. Kessler is an in-network providor for my insurance. I’ve done a little reading and he’s got a REALLY impressive bio, with special interests both in ADHD and nutrition. Now, I’m not sure if we’ll actually see him, or someone in his practice… but I am so much more comfortable getting this referral than taking whatever random person my EAP would provide. I called this afternoon and it’ll be a four-five month wait; Dr. Shoptaugh had said to expect three. So the school year may be close to over before he’s seen by them. I have to fill out a packet about an inch thick before they’ll even schedule the appointment, but I went and pickthed it up this afternoon and I’m already about half done.

Since I knew it would be a while trying to make do in the meantime, I gave his teacher a heads up and also spoke with the principal at his school. When we had the 504 meeting last year, the only accomodations we had written in were for testing, because he was doing so well. I noted a concern at the time if we ever reached a point Tyler can’t take meds, we would have to revisit. His principal thanked me for letting her know what was going on and said she’d touch base with the school social worker about classroom accomodations. So I may be having another 504 meeting before too much longer. His teacher is a nice lady, but I don’t really have a rapport of any kind with her and while I believe she’s passionate about gifted education, I don’t really get the impression she’s incredibly in tune with Tyler. I don’t think she’d be nearly as proactive in addressing his special needs as his 2nd grade teacher was, especially since she’ll be going on maternity leave soon. Which is another worry; there are going to be a lot of changes in the classroom… she’ll go on maternity leave sometime in February and then return just a few weeks before school lets out. I wonder how Tyler will handle those transitions, how a sub will handle Tyler, etc. I guess only time will tell.

I also made an appointment for myself with a therapist for next Tuesday.

Invasion of the body snatchers…

An email from the teacher…

Wednesday, April 07, 2004 1:05 PM

Me: What story would you guys like to hear today!
Class: (Yelling & excited) The next book by Lemony Snicket!!!!!!! Tyler (who usually loves this time of day, in deadpan voice): I hope it’s a short chapter ’cause I have a lot of work to do.

…and at this very moment, Tyler is working quietly and diligently on his assignments.

Am I totally against medication?

Not totally against it, but in general feel as a course of treatment, it should be used as a last resort, not a first line of defense. I have concerns about it yes, but I am at the point where I feel like I’ve exhausted all other resources. I’ve tried every parenting strategy and consequence I can think of… from spanking to not spanking, extra chores, loss of privileges, loss of possessions (took all his toys out of his room for about two weeks once), restriction to his room… I’ve changed his diet and eliminated all carbs in the AM and he is no longer to eat breakfast at school. We went to a few therapy sessions and that was a waste of time, though it’s probably because of the therapist. I’ve seen improvements to his behavior with two things I tried, but the first lasted two weeks, and the second lasted a little less than that. And it’s not that Tyler’s just not performing to his potential, or that he’s struggling a little bit… he is literally drowning. He is currently failing second grade. If I’m remembering correctly, he only has a passing grade (C or better) in two core subjects (B in math, C in science) and even those aren’t anywhere near his potential. He is reading above grade level, but his other language arts skills are a full year behind (penmanship, paragraph development). He is doing (albeit simple) multiplication and division using his head/fingers/letters in a book as counters, and that’s third grade work… his class is still learning regrouping. And with this NCLB crap, even if Tyler passes 2nd grade, Tyler will not pass third grade (he’ll be required to take the AIMS test) if he cannot demonstrate what we know he is capable of… there is a written essay portion in the test and I don’t know how he’ll pass it, although he can probably complete all other areas (even if not to his potential) through elimination.