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The purpose of this journal is not to complain about my son (whom I love very much) or to make people feel sorry for us. Rather, it is to try to make people understand life with a child suffering from ADHD. Often, things look "not so bad" on the outside. People try to tell us that our son is "just a boy" or that "it's a phase--he'll get over it." They don't see what goes on inside our home and at school. They don't realize that what they are witnessing is not a bunch of isolated incidents, but a continuing behavior pattern. We have been told to change our parenting style--to be stricter or not as strict, to punish more or less or differently, to "talk to him", to give him more attention, etc. It's hard for people to understand that there is an actual problem. I hope to make that clear here.
I also hope that this journal will eventually document our progress with Yohai. We most certainly have not given up on the chance of having a "normal" life with our son and we are constantly looking for ways to deal with his problems, both by changing our own behavior and through the use of medication.
The first day of this journal. Yesterday, Yohai went with Avi to a colleague's house for an Independence Day barbecue. When he got home, he was very upset, because Shira had played on the computer and he had to start his game over. He played quietly for a while, but when I told him that it was time to shut off the computer, he got very upset and refused. I had to go into his room and turn it off, while holding him down (he kept pushing me away). Once it was off, he started hitting me. Then, like every night, he refused to eat dinner. Getting him to bed was a problem, too. He kept bothering Shira by making all kinds of noises, etc. This morning, Yohai refused to get dressed. Instead, he kept kicking Avi, who was trying to dress him. I was late for work because of him (again...). He wasn't terrible at kindergarten, but he didn't behave well, either. When I went to pick him up, he ran out the door--that was a pretty good indication that it hadn't been a great day (later confirmed by the teacher). While I spoke to the teacher, he was hanging off the gate screaming, "I behaved myself! She's lying!" (in fact, we weren't even discussing his behavior at the time). He then ran out into the street. Lunch was no better. Yohai wanted cola, but refused to "ask" for it. He just kept banging the table screaming "Cola! Cola!" I calmly explained that he would get some when he either asked for it properly or poured it himself, but he refused to do either. Eventually, I put the cola away and left the table. Later, he poured his own drink and finished lunch. The rest of the day went pretty well. Yohai played on the computer and with Yovel. Then came dinner time. Same old story--he didn't want anything I offered. Finally, when I saw that there was no way he was going to eat, I took him, undressed him (he was struggling the entire time) and showered him. Once out of the shower, he was very cooperative about dressing and suddenly found something he wanted to eat. All went well until it was time for bed. Once again, he kept Shira awake in every way possible--talking, kicking her bed, etc. Another LONG day.
Another bad day. I'm not sure how kindergarten was (didn't talk to the teacher today), but Yohai was bouncing off the walls all afternoon. He kept fighting with Shira and was completely "hyper"--couldn't sit still for a minute. He was so restless that on several occasions, he dropped and spilled things. And he also closed Yovel's finger in the bathroom door. He spent much of the evening cursing at Avi and hitting him and getting him undressed for bed was nearly impossible. However, once in bed, he was quiet. I guess he must have been overtired.
My "peaceful" Saturday morning started with the sound of Yohai screaming at Avi to shut up and that he wished he were dead. Most of the morning went like that--Yohai screaming and crying and bothering Shira. But things got better. By late afternoon, he was calm and we actually had a relatively quiet afternoon and evening. I hope that this most recent "attack" (for lack of a better word) is over.
A wonderful day (at home, anyway)! Yohai got dressed by himself this morning. He almost never does that. He went off to kindergarten with no problem and was a pleasure when I picked him up, too. In the late afternoon, he walked with us to Shira's school for a parent-teacher conference and had a great time playing with other kids out in the hall while he waited for me. Even bedtime was easy tonight! Apparently, he got into some trouble at school (he says he hit the teacher--I'm not sure what happened, as I didn't speak to her), but at home, he was an angel! What a relief after the last few days.
I haven't been able to write in a while, not due to lack of time, but rather due to frustration. Our meeting with the doctor in late April was not at all constructive and we left feeling "blown off". The doctor suggested that perhaps we had "hurried" the diagnosis (we've only been involved in the diagnostic process since October...) and that maybe Yohai doesn't have ADHD. His "conclusion" was based mostly on the fact that Ritalin was not successful for us, as nothing else has really changed in Yohai's behavior or his day to day difficulties. In any case, we do not agree with the doctor at all and we are under the impression that he only said this to get rid of us because he has a large case load and he doesn't have time for patients who don't progress according to his plan. Unfortunately, this is one of the problems of socialized medicine. We have spoken with the social worker and the occupational therapist and both will be coming to Yohai's kindergarten this week to observe him (finally--they promised to do so months ago). After meeting with them again, we will be pursuing a second opinion. In the meantime, Yohai continues to have his good days and bad days. The last couple have been tough. Yesterday, we visited friends and they set up a small pool for the kids (Shira and Yohai, plus their 14 year old son and their 7 year old granddaughter). The kids were having a great time splashing each other, until Yohai decided that everyone was against him and he didn't want to be splashed anymore. He started screaming at the other kids and eventually cursing at them. He even slapped the 7 year old girl. I guess the stimulation was just too much for him (and the pool too small). At home, things have been tough, as well. Yohai has been busy for the last week or so trying to finish a game on his Sony PlayStation. He loves it and he's great at it, until he can't get through a stage--then he gets so frustrated that he starts screaming and crying and blaming everyone around. There's no use trying to explain to him that it's "just a game"--for him, it's much more. He's really good at computer and video games and I guess that's why he likes them so much--they're the only thing in his life that he can really "control". When a game is suddenly out of his control, he just can't handle it. As the end of the school year approaches and first grade grows nearer, I feel more and more apprehensive about Yohai entering elementary school (kindergartens here in Israel are not part of elementary schools). If he can curse at a 14 year old who splashed him in the pool, what's going to happen when a 5th or 6th grader steals his ball on the playground? And who's going to be there to protect him? And how will his teacher react when he starts calling out answers in class or when he gets up and starts walking around in the middle of a lesson or when he refuses to do classwork because he "doesn't like" to write and color and cut? And when are we going to get through the red tape of socialized medicine and be able to get some help for our son?
Well, things are looking up in that the social worker and the occupational therapist went to observe Yohai at kindergarten last week and both agreed that he demonstrates typical ADHD behavior. The social worker has already met with Yohai's teacher and she will be speaking to the doctor, as well, so I expect we will be consulting him again. It's a relief to finally have someone see what we've been talking about. Today, Yohai went for his first swimming lesson. There were three children in the group, Yohai, Shira and a five and a half year old girl. The teacher had lots and lots of patience for Yohai, but it was still frustrating to watch him. It's just so hard for him to listen--he does whatever he wants to do and doesn't follow instructions at all. I'm just thankful that the teacher wasn't at all disturbed by this. He noticed the problem, but he feels that Yohai will make progress and he's more than willing to work with him. I hope he'll still feel like this a few lessons from now.
Yohai and his teacher wrote a "contract" which contains behaviors that he is supposed to achieve every day. For example, he is supposed to sit still through all of "concentration time". At the end of the day, the teacher awards him a smiley for each section of the contract that he abided by. There are three sections and if he gets three smileys, he gets a prize at home (the teacher sends home a daily report). This week, Yohai got a prize every day except for one. We have tried a similar system at home. Together with Yohai, we chose five things that we want him to do (or not to do) every day. The list includes talking in a quiet voice (i.e. no yelling), no cursing, picking up his toys and other personal items, no hitting and sitting at the table throughout each meal. If Yohai does all five things, he gets a shekel to put in his bank (about 25 cents). If he gets a shekel every day for a week, he gets an extra five shekels. And after 20 days of receiving shekels (not necessarily in a row), he gets a big prize. We only wrote the contract a couple of days ago and we just started yesterday, but already I feel like things are calmer at home. Yohai did not get a shekel yesterday--he met only two of the conditions of the contract--but I still feel as if we are letting him take responsibility for his behavior and have control over the consequences. I really hope this will make our family life quieter.
This has been a wonderful week. The "contract system" really seems to be working. On the one hand, Yohai knows exactly what is expected of him and he knows that he will be rewarded for behaving well. He has only earned three shekels so far, but he has been trying really hard. I don't even remember the last time I heard him curse. The hardest part for him seems to be not screaming, but we're being as patient as possible on that one and giving him several "warnings", as long as there is no cursing or insulting involved. On the other hand, I don't feel "helpless" when Yohai does misbehave. I don't need to think quickly or make up punishments that I later regret. I know exactly how he will be penalized for his behavior. Although he was far from perfect, I can honestly say that I enjoyed spending time with Yohai this week (and I think I spent even more one on one time with him than usual, playing with the Sony PlayStation, reading to him, etc.). I hope this is a sign of things to come.
This morning we had yet another meeting with Yohai's doctor. The tone of this meeting was completely different from the tone of the previous meeting with him. He tried to be humble and apologized for the way he made us feel last time. We discussed medical alternatives to Ritalin and what we learned was that this doctor is not very familiar with other medications, as he has worked mostly with Ritalin. In any case, he doesn't want to start a new medication now with the summer break coming up. He prefers to wait until the new school year and it's hard to disagree with him, since if we start medication now and see improvement, we'll never know what it was exactly that caused the improvement. Yohai will be going for a psychological evaluation in early July and then we'll wait until October to see the doctor again. More waiting... *sigh* In the meantime, things at home and at school have been bearable, if not perfect. Saturday was a really difficult day for Yohai. He got very frustrated at his game on the Sony PlayStation and began to take it out on his sister and on me. I took the game away, of course, but at that point it was too late. I sent Yohai to his room for time out and he trashed the room--throwing books all over the floor. After one small incident with the swimming teacher last week, swimming lessons have been going pretty well. For some reason, Yohai particularly likes to practice kicking and he talks to himself as he does it (repeating over and over what the teacher told him to do). I suppose this is a lot better than screaming to the teacher every 10 seconds to show him what he's doing (there are six children in the swimming group, so Yohai can't always have the one on one attention that he would like).
Last night Yohai had his end of the year party at kindergarten. It started at 8:30 and he was tired, and this was reflected in his behavior. The beginning was awful. Yohai got hold of a noisemaker and kept making noise with it at inappropriate moments. Finally, I took it away and he started screaming at me. I was just about to take him out of the classroom when the teacher came over and let him sit in her lap. He did finally calm down, but it took a while. Fortunately, the accordionist knows Yohai (he came to the class once a week this year) and he is very patient with him. Every time he needed volunteers, he immediately turned to Yohai and this was very helpful. He has definitely noticed a problem, however. I saw him again today at Shira's end of the year party and approached him to thank him. Not knowing that we had already taken steps to help Yohai, he suggested that we take him for a consultation. It makes me feel so awful when I hear people say things like that, but it does, at least, make me confident of the diagnosis and that this isn't something that we have "invented". Despite the total ignorance of most Israelis about ADHD, I have been surprised by the support that we have received from some people. Last week, Yohai and five other children born in the summer celebrated their birthdays at kindergarten. We hired a magician and Yohai, of course, jumped in the air and screamed "Me! Me!" every time he asked for volunteers. The magician was not very accomodating and most of the time, he just ignored Yohai completely. The teacher said something to him and that helped for a while, but then he went back to ignoring him and Yohai was getting very frustrated. The magician made hats out of balloons for a few of the kids who helped him and Yohai really wanted a balloon. Finally, one of the mothers spoke up and said, "Yohai didn't get a balloon. Please give him one." I could have kissed her. Yohai got his balloon and he calmed down a bit. I only wish I knew how to better explain to people who have never heard of ADHD that my son has a problem. On the one hand, I don't want to make excuses for him, but on the other hand, I don't want him to suffer because people just assume that he's poorly disciplined and that he could control himself if he wanted to.
Summer vacation has been rough so far. Yohai was at daycamp for three weeks and surprisingly, that went very well (he was very attached to his counselor and he ended up having a wonderful time). At home, though, he's been really tough to deal with. It's been made worse by the fact that we're moving and we're busy packing and making arrangements. We've had to take him with us to various stores and he just can't seem to handle all the stimulation. Today, we had yet another evaluation with the child psychologist. We will receive the results of the evaluation in a few weeks, but she did make a few comments. First of all, his "restlessness" was painfully obvious to her. He could hardly sit in his seat and he even got up and walked out of the room at one point. Also, she indicated that there seems to be a problem with audio processing. He seems to confuse certain letters and that causes him to misunderstand words. I had noticed something "wrong" with his speech (and comprehension) a long time ago, but I couldn't put my finger on the exact problem. Everyone kept telling me that he was fine (and he has a huge vocabulary), so I decided I must be imagining things. I'm glad that this came up during his evaluation. The third thing that she told us is that he appears to be gifted ("appears to be" because she hasn't yet gone over his tests, but it was pretty apparent from his answers). This was comforting news (though it certainly didn't come as a surprise), because it means that if he can overcome his difficulties, he has very high learning potential.
Yohai started off school really well, but I have to admit that I knew it was only a matter of time before the trouble started. It took exactly a week. Today, Yohai went to school tired because instead of going to sleep when they were supposed to, he and Shira played around until about 11:00 p.m. last night. I was pretty sure that today would be the day when things fell apart and I was right. In gym class, he got into a fight with another boy and he was sent to the school counselor. He calmed down, but his teacher reported that by the end of the day, he was all worked up again. During last week's appointment with the psychologist, she saw how badly his behavior had deteriorated and very much wanted us to start him on medication before the school year began. The pediatrician agreed with the doctor at the Child Develpment Center, though, and wanted to wait until after the Jewish Holidays. Yesterday, the psychologist called us with the name of a psychiatrist who she thinks can help us. We need to set up an appointment and hopefully, she will give us the support that we need, including medication, which at this point, we're pretty sure is necessary. Yohai is so bright -- I don't want his academic performance to suffer because of his lack of impulse control. Also, he really needs to practice writing and the only way he's going to do that is if he's calm enough to sit down and work on it. I can't believe it's been a year since we first turned to the doctor for help and apart for a diagnosis, we have gotten nowhere.
It's been a while since I last updated this page and quite a bit has happened. First was our visit to the psychiatrist who probably needs psychiatric treatment herself. Without getting into too many details (just remembering it is painful), I'll just say that she wasn't at all helpful and, in fact, at the time, I thought she may have actually done harm. Fortunately, Yohai "bounced back" and we got over the trauma, as well. In October, Yohai started on Ritalin again. He's now taking 10 mg twice a day and there is some improvement. However, as we have been sadly reminded several times, Ritalin is not a "cure-all". He is less impulsive and he is better able to get himself back under control when he loses his temper. The behavior problems persist, though, and we are at our wit's end. Mornings and evenings are especially difficult -- it's almost impossible to get Yohai up and dressed in the morning and getting him into bed at night is even more of a nightmare (especially since he started the Ritalin -- he seems to be having a lot more trouble falling asleep). The most frustrating thing is people with grown children who tell me "We've all been through it." They don't have the slightest idea of what we go through on a daily basis. I wonder how many of their children hit them and cursed at them regularly, how many of them had to literally drag their children out of bed in the morning and to the shower in the evening and how many of them had items like books and chairs thrown at them... Did their children try to break down the door when they were sent to their rooms? And did they completely trash their rooms because they didn't feel like being punished? And how many of their children endangered their own personal safety on a regular basis (two days ago, Yohai put a small chair on top of a larger chair so that he could climb up into our closet to reach a disk that Avi had put there because he didn't want him to play with it)? Life with a child with ADHD is overwhelming as it is -- I certainly don't need people to make me feel like an incompetent parent because I can't deal with my children as well as they did with theirs. Thankfully, Yohai is doing well in school and he's even writing -- he never complains about it being difficult for him and it doesn't bother him that we can't always read what he writes (he just reads it to us). In general, he seems to like going to school and he is very conscientious about homework -- he almost always does it as soon as he gets home. He has apparently been blessed not only with a very high IQ, but also with a high level of motivation.
Today was Purim. I should have known that it was going to be a rough day after Yohai came home from school on Sunday and told me that the kids had laughed at his costume (Peter Pan) -- I tried to explain that people are supposed to laugh at your Purim costume -- that it's supposed to be fun -- but he just didn't seem to get it. Today, he put on his costume without an arguement, but when we got downtown, he suddenly demanded that we take it off and said he wouldn't get out of the car if we didn't dress him in "normal" clothes. We did manage to get him out of the car, but most of the time that we were walking around, he was screaming: "Change my clothes!" When we got to the central stage, Yohai was very whiny and kept saying that he "couldn't breathe" (it was very crowded). Eventually, we just left. We drove around for a while looking for something to do, but Yohai was already really worked up and he just couldn't control himself. He and Shira started arguing and he slapped her face, so Avi took us all home. The funny thing is, when we got home, Yovel and Shira took off their costumes and Yohai kept his on. I know he liked the costume -- he was excited about buying it and about trying it on at home. I guess he was just embarrassed by the fact that people pointed it out (he made a very cute Peter Pan). Sometimes I wonder if I'll ever figure out how this kid's mind works! |
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