ADHD moms, some input?

[JanB]

I've posted at length regarding my ongoing issues with Zeke here. Things have kind of escalated in the last few weeks, and we requested a referral from his pediatrician for the behavioral psychology team at Children's Hospital. (They come highly recommended and are apparently very good, but are also in high demand, so unfortunately it will probably be at least 2 months before we get an appointment.) I have kind of come to a personal Waterloo in the past few weeks in which I realized, you know what, Zeke's behaviors are NOT in the range of what is considered "normal." He is NOT "just being a boy" and I am starting to think we may be looking at something that is diagnosable with a name, if you follow me. I guess I'm just wondering if people can share how they realized something was different about their kids and how they reached a diagnosis and so forth. Here are things I have noticed about Zeke. I am going to try to write this as objectively as possible:

* He has ongoing behavior issues at school that seem to be related to both lack of impulse control, and also lack of social awareness. Like, he does stuff that is just really inappropriate, and doesn't seem to realize how inappropriate it is. Even when he realizes something is wrong, if he thinks it will be funny or get a big reaction, he'll do it anyway. This was a problem in the first half of kindergarten last year (it seemed to get better after Christmas break, when we instituted a reward system for him) and it has been a problem for all of first grade so far.

* He has trouble finishing his school work. There is a lack of focus and motivation for anything he finds the least bit boring or tedious. If he's building a Lego creation, he can sit there for an hour working on it. If he's sitting in front of a writing worksheet, it takes him half an hour to do the first line, during which he does everything BUT write. He shreds paper, he plays with his pencil eraser, he looks under the table for "something I dropped," etc. His teacher says it's pretty similar at school.

* Ever since he was a toddler, I've observed that he seems to have more trouble than average doing group activities. I'm talking about things like Music Together, etc. All of the kids in that age group do a certain amount of running around and not paying attention, but Zeke literally would not ever participate in the group stuff unless I held him down. Seriously. At the time I figured he was just more active than average, but now I wonder. When he was 4-5 years old, we tried one season of T-ball and one season of soccer, and both were miserable failures because instead of playing the game, he would be wandering around the outfield, inspecting the goal net, talking to the referee, lying down on the field, and deciding he was done and it was time to go home, in the middle of a game. Again, at the time everyone just said, "He's so young, it's probably normal," but none of the other kids were doing this stuff, KWIM? It just seemed MORE than normal. Maybe I'm wrong.

* In the last week we've instituted a new reward/consequence program where we get a note home from his teacher every day with three statements, "I used self-control today," "I respected my classmates today," and "I stayed on task and got my work done today." Each has a YES, SOMETIMES, and NO next to it. On days that he gets any NOs, he loses TV privileges that day. On a day with all YES or SOMETIMES, he gets a sticker and after 3 stickers, he gets a peppermint hot cocoa from Tim Hortons. When he gets 5 days in a row with all YESes, his teacher will have lunch with him and buy him a McDonald's Happy Meal. He is VERY VERY excited about these rewards, and yet on the first two days of the program, he came home with (day 1) all NOs and (day 2) one SOMETIMES, two NOs. To me this says that he is definitely trying, as we saw improvement on day 2, but that even with a great reward waiting for him, he still can't quite pull the behavior together.

I am worried about him. I am wondering if this sounds similar to what others have noticed in their kids. I wish the appointment with the Children's people was sooner. And, I hope the reward system starts working. I'm kind of terrified at this point that he's going to be stigmatized as the "weird, mean kid" by the other students if we don't get this stuff figured out.

Thanks for reading all of this if you got to the end. :)

[justrose]

I think you are doing the right thing, absolutely, and I am totally there with you about having the "weird, mean kid" :(

It is hard, with boys I think especially, to try to ascertain what is normal behavior and what is not. I read your post three times, and in my (unprofessional) opinion all of those things you mentioned combined does sound indicative of a problem. It's like, one or two things, maybe you could dismiss. But all of them at once, and the fact that you mentioned he has had these issues for a long time (therefore ruling out JUST a problem at school w/ a particular teacher, for example) is sort of telling.

Keep us posted w/ how the appointment goes. One thing I would suggest, having been there, is to call and ask the doctor's office if they want/need info from the classroom teacher before the appointment.

[kianurse]

Jan,
I also am new to the world of ADHD. DH and I took placement of a sibbling set last year and finalized the adoption this year. In his history DS was thrown out of several preschools for his inability to be aware of self control and he has always been unable to play with others in group play and refused to do circle time. Circle time usually got him removed from the classroom setting. His tantrums of frustration were huge and usually distructive. All of this was overlooked as he was a "child of the system". DH and I spent a lot of money to find small schools for him where he was not in large groups going based off of the diagnosis we had already been given and his current docs saying this is just the way he is and blowing it off again as he was a "product of the system" if i remember that quote correctly. Upon entering kindergarten this year DS had problems from the start dealing with large groups and would do crazy impulsive things that began to make him the class clown. His impulsivity reached an all time high and began to make his mood angry as he shouted at me on the first day of kindergarten he hated it and he was never going back. (Now to explain i had already asked our local school district not to mainstream him due to his existing paperwork BUT NOOOOOOOOOO they insisted this be done and in EIGHT days he destroyed a classroom and lost all sense of selfesteem. To the point of cleaning his room was to overwhelming and dressing himself had deminished) So we did get him to special ed and I changed his current doc to someone I knew personally and asked for help. That was the best thing i ever did as he was then no longer seen as a "product of the system" but a little boy who needed help to function. DS was tested both at school and by a child psyc. DS could not play with others his own age, could not complete simple tasks, was unable to play with simple toys or parallel play without causing an incident. Four weeks agao DS began his meds and he is a different child. He earns all green cards a school for behavior, can attempt to play with others (not always successful). His new goal in special ed is to work on frustration and achieve needs in a peaceful solution and setting. Before this DS did not even try to socialize as he would say what is the use i am only going to get into trouble. It broke my heart. I guess my encouragement is if you don't like the answer you get keep going until you are able to find someone who can help you..:hug: it has been and will be a lot longer road to go but I am so glad we finally are on a good path for a bit.

[Melanie]

I think from what you've described, that Zeke certainly could meet the criteria for ADHD. They stapled a couple other diagnoses on Kyle, too, that I honestly can't even remember, so be prepared for that possibility as well when you go in for his evaluations.

Thoughts on your reward system: Having to do something for an entire day is way too large a project for him right now. I think the idea is great, but the time frame is inappropriate, particularly for his age and potential diagnosis. If the teacher could limit it, say, to "I used self control today during circle time," "I respected my friends today during recess," etc, that may work better for him and allow him some degree of success. Even so, without a cue to remember what is expected, he may falter. If you want the reward system to work at all, he has to experience success at some level. You have to start really small and go from there, if he's ADD/ADHD.

The best decision we've made for Kyle was to change schools. There is no "circle" time, or any of the other activities that Kyle simply could not do. The Montessori and Waldorf schools do very well for these kids, though I'm sure there are other private and/or charter schools that would appreciate what he's dealing with. Now, Kyle spends most of his day learning and much less time just trying not to get into trouble. Try to remember how hard Zeke's having to work just to function at school right now. I might even do away with the punishment at home for what he doesn't accomplish at school. The boy needs some down time.

Believe me, I did all this so wrong for so long, I certainly don't want to come across as "knowing it all".

If you want any of my ADD diet info, let me know. I'll send some of it to you, but that may be more involved than you're ready to get at this point. Call me if you need/want to.

[JanB]

Melanie, he was in a Montessori school for preschool, ages 3-5, and seemed to be relatively successful there. They do have an elementary program for grades 1-8, but I have a few concerns. One is that in the preschool program, he was extremely resistant to do any writing works. Like, they had to really pull teeth to get him to do ANY. Writing is his biggest weak point, and I worry that in the Montessori program, he will wind up not addressing his weak points. Also, and I hate that this is a sticking point, but it is, the Montessori school tuition rates for elementary would be crippling to our family budget. We could probably swing it, but just barely, and paying off our debts would have to go on hold for several years. If we can make his public elementary school work, I really want to. And honestly, his teachers have been really willing to work with us so far. The magnet school he's in is really great. I feel that he is on the verge of being able to succeed there, there's just some hurdles to get through first. I don't know if that makes sense.

I did praise the crap out of Zeke when he came home with "SOMETIMES" circled. I told him that he did a great job meeting his goal for at least part of the day and that I was proud of him for having tried hard. I will discuss with his teacher what we can do to give him smaller goals during the day. I am always so reluctant to add extra work to his teachers, but yet this one seems really receptive, so I should probably just go for it.

Go ahead and send me the ADD diet info. Are you managing with just diet/behavioral techniques?

This is really a brave new world for me. Oh, and I need to just vent something for a moment. Ever since Zeke was a toddler, every single time I have expressed concern about his failure to participate in group activities, or his inability to get through an entire soccer game (heck, even a single quarter) without serious problems, or whatever, people have brushed me off and said, "It's normal," or "You're just expecting too much too early" or "Boys will be boys." If anyone had taken me seriously at any point, I feel like I might have been pushed to get him looked at well before elementary school started, and he wouldn't be having as many issues that we're having to deal with in the middle of the school year when he's already burned some bridges. Sigh.

[Melanie]

Ever since Zeke was a toddler, every single time I have expressed concern about his failure to participate in group activities, or his inability to get through an entire soccer game (heck, even a single quarter) without serious problems, or whatever, people have brushed me off and said, "It's normal," or "You're just expecting too much too early" or "Boys will be boys." If anyone had taken me seriously at any point, I feel like I might have been pushed to get him looked at well before elementary school started, and he wouldn't be having as many issues that we're having to deal with in the middle of the school year when he's already burned some bridges. Sigh.
AMEN! It finally took my mom and sister keeping Kyle and Anna for four solid days once for them to come to ME and say "there's something not right with Kyle." Well, DUH. I've been saying that for years. :doh: I know it's frustrating.

Yes, right now, we are managing with just diet and the behavioral mod stuff we've learned along the way. If I had had to keep him in our public school (and yours may be infinitely more capable of dealing with him that ours), we may very well have looked into meds by now. It's hard to say because things have been really good for a few months now. This summer was horrible. I don't know what causes the ups and downs. IF we have to take a "next step", we'll try the caffeine regimen before going to meds. We had so many problems when dss was on them, I just don't want to go that route if we can avoid it.

Believe me, I totally understand about the cost. I don't know what we're going to do when Kyle ages out of this school. I can't afford anywhere else. This place is so cheap, I was able to cover the cost by going from two to three days of work a week, and for me, it was worth that change. If I were to go back to work full time, we could cover the private middle and high school tuition, but with K and A both involved, it would cost over $30,000 a year. That seems so stupid, but after all we went through with dss, it might be worth the money if it keeps them somewhere safe and mentally healthy for them. That's a different rant.

I'll find that stuff and get it mailed to you this week. It's difficult to follow, and I mean really difficult...or at least it was for us.

[Jules]

I don't have much experience w. ADHD, but when I read your post it sounded exactly like my best friend's son, who is 7 and in 2nd grade this year. He has been having difficulty in school (and acts the same way in sports that you mentioned!) ever since Kindergarten and she took him to be tested at the end of last year for ADD, and unfortunately got the worst therapist.EVER who really wasn't much help, aside from wanting to put him on meds immediately. She, like Melanie said wants that to be the last resort (btw, one of my nephews was also diagnosed and has been on meds and according to my brother, it hasn't helped all that much).

His teacher last year was very concerned and they really had only 2 options - hold him back a year or have him in a special needs class (he goes to public school) She agonized over the decision, and eventually decided on the SN class. Well, this year is the first year he has had any sort of success in class. It is a very small class - 8 kids or so - and it has been a really good environment for him. She was almost in tears the other day telling me his teacher called her (she was expecting the worst, b/c she is used to daily notes and calls from his teachers expressing concern), but instead of relaying more bad news, told her he had a great week and how proud of him she was.

I just wanted to relay that in case there's that option for you in the future. Also, like Mel, she has him on a special diet and she really notices a difference when he goes off of it.

Good luck to you!

[JanB]

OK, I called this morning to expedite his appointment, and they have given us a Dec. 11 appointment with a licensed social worker. I am happy that the timeframe is pretty soon, but also worried that maybe we should be seeing a psychologist instead of a licensed social worker? Any thoughts?

[Jules]

I'm not sure who is the best type of professional to diagnose ADD/ADHD...hopefully someone else will know.

Good luck!

[Melanie]

I'd be a little hesitant, as I think of MSW's as more "counselors" than "therapists", but that may be an unfair bias. If she's at the Children's Hospital, it'll probably be ok.

[Amonika]

MSW's don't have as much schooling as therapist or psychologist. I'm guessing the MSW is going to be specialized in regards to Behavior issues and be heavily trained. You can ask for her qualifications. I was a MSW major in college for a stint and went through most of the basic course work. It was the same as the psychology students went through. If Children's Hospital has her on their Behavorial staff, I'm guessing she's good. She will also consult with the other therapist.

[Paige]

Jan, I only have a second but wanted to throw something out there just for consideration. So much of Zeke's behavior sounds like Stuart. But his was never so inappropriate or so out there that we thought it was anymore than just normal boy behavior. Of course as we are getting into the teen years we are being hit with some issues that make me realize there may have been more going on.

The sports thing though... we never had this issue as Stu took to sports like a duck to water. You said that Zeke just can't seem to get the hang of the team sports but I know that when Stuart isn't involved in one, his behavior goes down the tube. Is there any possibility of you starting him on a swim team? That is individual and more self focused. I have to tell you the changes in Maureen's behavior in the summer when she was on swim team were fabulous!

And now I have to shower or I won't make prayer group... But I'll be back later so think out loud some more.

[islandmom]

I just happened on your post. I would allow him to be seen by the social worker, but here, I wouldn't allow the social worker to actually do any diagnosing. They might actually be able to do testing (see if they are a psychomotrist --hope I spelled that right) That person is does tests for Psychologists. You know the sort of tests that a Psychologist wouldn't actually need to see the child perform.

But, there are things that the Psychologist actually needs to see a child do. The Psychologist is going to want a detailed interview (or report) of your child's behavior, like what you wrote in your original post, from the parents. From teachers, and other caregivers. My husband will even go to the school and observe the child in the classroom through a window, without the child knowing he is there.

Then with all the test, the 'eye witness accounts', all the reports from those who love and those who know the child, and all the scoring sheets, they set out to figure out what is going on. They have physicans reports, etc. They don't go into it with it thinking it is ADHD, or anything, they go into it trying to piece together a puzzle. It takes so many hours, it is quite fascinating to watch someone labor over a report.

It has made me realize that his 12 years of school, and work experience is where it is at in diagnosing children with behavior issues.

[Eekee]

Jan, your post about Zeke sounds so familiar! Impulse control has been a big issue for us in Kindergarten. We've tried reward systems too, but it's taken a long time to see any results. CME has had a good few weeks, but I think it's due more to a "phase upswing" than anything we've done. His teacher uses a card system: a green smiley face, yellow straight face, a red sad face, then a blue sad face which means a call home. She's starting giving CME the chance to "reset" his card if he turns his behavior around. It seems to be giving him some incentive. And it also gives her a bit more leverage, too, since he sometimes has had his card turned to red before 10 am!

We're also waiting on an apt for a developmental ped to do an evaluation. We know he has SID (which looks alot like ADHD sometimes) and dyspraxia, and those are being treated with OT, but we're checking to make sure there's not something else we're missing.

CME was a preemie, so he's been in OT since he was about a year old. But there was a gap between 3 years and 4 years, where everyone (except me) thought he was just fine, being a boy, etc. It took me finding our OT clinic to finally get a diagnosis and get the right help. Even now, I want to make double sure that there isn't something else going on that his OT can't diagnose. Hopefully, the people your appointment is with will be those guys to give you the answers and help you need!

[JanB]

Well, we're back from the appointment. Mostly she just interviewed me about family history, background, and the nature of the problems we've been seeing. Zeke very helpfully kept impatiently interrupting us every 5 minutes or less to tell us about the train set he was playing with from her box of toys. (Seriously; I was actually kind of glad he was doing this as it's a great example of the kind of issue he has.)

She said that it sounds like basically all of his problems stem from lack of impulse control, and that this is pretty classic for kids that have some signs of ADHD. She wants just me (or me and DH) to come back in two weeks to discuss behavioral strategies we can use with Zeke, and then after that she'll have a meeting with just Zeke to work on some things with him. We agreed that for now, medication is not off the table but it's not really on the table either until we try other things first.

It was pretty positive. Zeke really liked the social worker, and so did I. So we'll see where we go from here...

Today, btw, Zeke got a Yes in "respected classmates", a Sometimes in "used self-control" and a No in "stayed on task." So far our incentive program has been working pretty well for his behavior issues in class, but is doing jack squat to help him stay on task and get his work done. I guess we'll just keep chugging.

Oh, and if I might vent for just a sec... I was talking to an acquaintance (it's the crazy not-really-a-friend that I mentioned recently in the Cafe, if you happened to read that post) that I had formerly THOUGHT was kind of like-minded with her parenting strategies, and explaining about our sticker chart incentive program, and she said very dismissively, "Oh, I've never really believed in sticker charts." I started to say that I didn't used to either, but that it's worked in the past with Zeke, and she just kind of rolled right over me and said that when her oldest son (now 16) was in elementary, he only misbehaved one time, and that night when he got home from school, she had removed every toy, book, and game from his room, and she didn't say a word to him about it, but he knew what it was for, and he never misbehaved again.

I didn't even know where to start with how many different ways this is totally not applicable to my and Zeke's situation so I just said "mm-HMM" and got out of there as fast as I could. :rolleyes:

[SusanH]

I'm glad the appointment went well and glad to hear that his behavior was improved today! I'm cracking up at your acquaintance and her "helpful" advice. I've been on the receiving end of similar advice - "Oh, we did this once and then we never had another tantrum" - and it's hard to know whether to laugh or cry.

[kianurse]

Jan glad your appt went well.

[Anna Banana]

I'm glad the appt. went well. :)

As for the "friend", I have to highly disagree w/ her! Why do SO MANY teachers use sticker charts/marble jars then? Why is it so successful for others? She sounds very narrow-minded. :hug: I think you guys are doing great!

[Melanie]

Ignore the "helpful advice". You know Zeke. If it works for him, great. If it doesn't, then you find something else. I'm so glad you were happy with the appt. You'll get a lot out of the sessions with her, I'm sure.

[Lil Mama]

All I can do is offer our situation. Since my daughter turned 3 ( she is now 6) I noticed how she was so differant. The exact same situations you mentioned. We tried ballet and made it halfway through the year before I pulled her. She couldnt sit still, ran around the room, disrupted the entire class, started talking to the teacher. She also was in the same swim class 4 times due to not paying attention. the other kids would be sitting there paying attention waiting for thier turn and she would be darting off or once again interrupting.
She has HUGE issue's with impluse control speech wise, she cuts in when you are talking mid sentence with something COMPLETELY unrelated, says inapproriate things. By kindy I was begging the teacher to test her for ADHD and was refused. afew months went by and she came to me and requested we do testing.
So yes she has ADHD, did this help???? not really. They sent us to a ADHD specialist who came highly reccomended and he did squat for us. He gave me the name of a book and said see you in a year for a progress report.
On my own I did research and started her on Omega 3 pills, they are for kids and I SWEAR to you, she is a new kid. If she goes a day without them she is right back to her old self, she takes 5 pills a day and can sit still, can listen, just passed her swim class that she failed 4 or 5 times before due to her issue's. I didnt ever want to do meds with her and was determined to find something that worked and the omega pills are a gift. We also switched to organic fruit, veggies, milk and dont know if it helps but it cant possibly hurt right. I have heard red dye can make these kids spiral downhill.
I guess all i can say is, your post was us to a T 2 years ago. I literally sat in my car bawling because I was so stressed with her behaviour after a bad store visit. I didnt enjoy being her mom, then it just dawned on me, i was punishing her for something she has ZERO control over, she literally cannot help herself.
Feel free to pm me. I have been there, and somehow emerged, med free.

[Melanie]

I had read about the omega-3 for kids with anxiety, which Kyle does battle to a degree, and I wondered if it would be of any benefit. I may give that a shot. It certainly can't hurt, right?

[Lisa_K]

Wow, I could have written this post to describe our situation as well.

Linds is (like Stuart) a sports kid, so she does waaay better when she has hockey then on days she doesn't.

We've done psychological testing, and are waiting to get neuro-something testing, but that won't be for a couple more months or so.

Sorry you are going through this.

[miche]

More positives on the Omega-3's. There have been scientific studies on Omega-3's and ADHD. I have an email with the test of an Australian study. They also seem to help the majority of kids with apraxia (one thing that Sean has) although they didn't work that much for Sean. Tommy doesn't have an ADHD diagnosis and I don't think he truly has it and his teachers didn't either, but that is becuase he was never disruptive, but his mind wanders and he has problems staying on task, particularly if he's not interested. Well the fish oils do help his concentration!

For ADHD kids they need a higher ration of DHA compared to the "apraxic dose." For Sean we've used Nordic Naturals Pro-EFA (or Complete Omega 3-6-9 which is same, EFA stands for essential fatty acids) and Pro-EPA because apraxic kids seem to respond to a higher EPA. I really like the NN brand because it's a very reputable company with pure mercury free oils, plus the lemon flavoring is good and the pills don't burp back up on you! When my kids were little they either just chewed the capsule (they like the taste - tastes like oily salmon with lemon to me) or for Tommy I mixed it in with applesauce (tried a variety of things and this masked the taste best - others use OJ or yogurt.) Now both boys can swallow even these huge pills so it's even easier.

Anyway let me know if anyone wants me to email that article to you! It discusses dosages used which I can't recall.

Most kids can safely take higher doses of EFAs, and my kids' doctor said she thinks they are a great supplement. Some kids shouldn't take EFAs (such as those with a history of seizures) so run it by your doc first!