Sometimes it's one step forward and two steps back. Other times it's two steps forward and one step back. Most times we really don't know whether we're coming or going. There's always a bright spot in something negative and a little rain cloud somewhere in the positive. Seems a little cliche, but it's not an exaggeration.
This past week we've made some progress at the "help desk." Noah's completed his assessments with his new RSP teacher as well as the evaluations with the school psychologist. We met yesterday with Noah's Education Specialist and discussed the fact that Noah isn't able to focus for the length of time needed to complete all the lessons for sixth graders each day. No problem...we can pick and choose what he is able to handle. I love this school program...did I mention that? Our first IEP since 2008 is next Wednesday morning. I'd say that's all positive progress.
Then there's the little rain cloud. Completion of the evaluations and scheduling the IEP also means we'll soon be finding out if any new LD's have manifested, what his current IQ level is, and what disabilities or disorders the school feels he has. I usually end up crying when I read the reports. Today I was given the BASC-2 Parent Rating Scales to complete for Noah. And there was a new one with it that I had never seen before. It's the ASDS which stands for Asperger Syndrome Diagnostic Scale. I was happy to see that so much is being done to figure out what Noah needs, yet I really wanted to cry as I answered yes to so many of the AS behaviors.
Thursday, September 16, 2010
Saturday, September 11, 2010
Discovery
It's been a week of discovery for us. Some happy, some sad. It started with an email I got from Daniel's teacher on Thursday. What didn't surprise me was that Mr. P said Daniel is a delight to have in class, but he's having a hard time getting any work out of him. Yep, that's Daniel. The manipulative charmer. He has a passive-agressive personality disorder and he'll try hard to please you and make you think that he's going to do everything you want, and then he does none of it and gets out of all of it. I always thought he didn't want to do the work, but it may be that he can't do it. I fear something more may be going on than the passive-agressive stuff. We've discovered this fact, and it's going to take some discovery to find out what's going on.
Yesterday the boys and I went to the Discovery Science Center for a school field trip. Being that we're in a hybrid homeschool program all the boys can come regardless of age or grade. So off we went to Santa Ana.
Now, I have to give you a bit of background, without taking up too much space. Kenny's sister is his only sibling. She has two sons, ages 6 and 18 months, who are the only full cousins my kids have since my brother and I are estranged. They live in Chino Hills, which really isn't that far from Murrieta, maybe an hour away. We don't see them often...let's just say I never saw her pregnant with her youngest, and she never saw me pregnant with my youngest. Sad, I know, and what's worse is that we had a sort of falling out a couple months ago.
Well, I knew that she homeschooled her first grader through the same charter school as my boys, but I didn't think about the fact that she might be on the same field trip as us yesterday. But, she was. Since our falling out was over the phone and email, I discovered that things are alot different when you're face to face. Not much was said about the situation, but we hugged and spent the day together.
Our falling out was caused, in part, by her comments about things we were doing in our life. Our reply was that she had no idea of what our life was really like. I think it might have been a day of discovery for her too. At least I hope it was, because it might actually help the situation. She saw first hand how life with Noah is. It was a fairly good day for him, but it had some rough points. He panicked when we had to take the elevator rather than the stairs because we had strollers with us. He had to leave the Grossology exhibit because the noise level in the enclosed area where it was displayed was too much for him to handle. There was a six-foot tall robot "person" with a water faucet for a head telling the facts about snot, and Noah got quite attached to him, wishing he could take him home. So, she might have discovered that we weren't exaggerating about how difficult life is for us sometimes. In turn, I discovered (when she told me) that her family has some issues with ADD and anxiety as well.
Yesterday the boys and I went to the Discovery Science Center for a school field trip. Being that we're in a hybrid homeschool program all the boys can come regardless of age or grade. So off we went to Santa Ana.
Now, I have to give you a bit of background, without taking up too much space. Kenny's sister is his only sibling. She has two sons, ages 6 and 18 months, who are the only full cousins my kids have since my brother and I are estranged. They live in Chino Hills, which really isn't that far from Murrieta, maybe an hour away. We don't see them often...let's just say I never saw her pregnant with her youngest, and she never saw me pregnant with my youngest. Sad, I know, and what's worse is that we had a sort of falling out a couple months ago.
Well, I knew that she homeschooled her first grader through the same charter school as my boys, but I didn't think about the fact that she might be on the same field trip as us yesterday. But, she was. Since our falling out was over the phone and email, I discovered that things are alot different when you're face to face. Not much was said about the situation, but we hugged and spent the day together.
Our falling out was caused, in part, by her comments about things we were doing in our life. Our reply was that she had no idea of what our life was really like. I think it might have been a day of discovery for her too. At least I hope it was, because it might actually help the situation. She saw first hand how life with Noah is. It was a fairly good day for him, but it had some rough points. He panicked when we had to take the elevator rather than the stairs because we had strollers with us. He had to leave the Grossology exhibit because the noise level in the enclosed area where it was displayed was too much for him to handle. There was a six-foot tall robot "person" with a water faucet for a head telling the facts about snot, and Noah got quite attached to him, wishing he could take him home. So, she might have discovered that we weren't exaggerating about how difficult life is for us sometimes. In turn, I discovered (when she told me) that her family has some issues with ADD and anxiety as well.
The boys discovered stuff about how things worked and why things happen the way they do. We all discovered what it felt like to lay on a bed of nails! And I discovered that life rarely unfolds the way you expect it to.
 |
| My boys and their cousins. |
Thursday, August 26, 2010
Prepare for the worst
We had a thunder/lightning storm yesterday. Second one in as many months. It wasn't as big as the last one, but the last one scared Noah enough that he started to panic when we started seeing lightning while we were driving. Rain in 108 degree weather is just lovely, isn't it?! Just as we made it to another day, yet another storm. This time we started seeing lightning on our way to pick up the boys from school. We got to the front of the pick -up line of cars and the boys come over to the van. Noah throws open the side door of the van and yells out "GET IN! ANOTHER STORM IS COMING!" They get in and Daniel asks if we're stopping anywhere on the way home. Noah quickly replies, "NO! WE'VE GOT TO GO HOME AND PREPARE FOR THE WORST."
I started to think...well, isn't that the statement we need to live by when it comes to living with a bipolar child. Pray for the best, prepare for the worst. I know it sounds pessimistic, but it's not. If we prepare for the worst, then we're prepared to help Noah through whatever it is he's dealing with at the time. Not to mention that we won't be caught off guard, embarrassed or disappointed. Embarrassed for Noah, disappointed sometimes for both Noah and the other boys...like leaving Disneyland because Noah was having a balloon meltdown.
Recently, preparations have included trying to teach Noah to keep his voice down in public. I, personally, am always amused at what he has to say, but I have to keep a straight face or people might think I'm an awful mother who really doesn't care that her child is walking through Disneyland telling me (loudly) that if 'that African-American man was really black like people call them, then really he would be as dark as the black socks he is wearing'. Oh and Target is always a great place to watch people's reactions when your son yells down the aisle as he's on his way back from the bathroom that HIS STOMACH HURTS BUT IT WON'T COME OUT CUZ HE'S CONSTIPATED. Oh well, three weeks ago, at Target, it was that he still had diarrhea after he had been sick all week. My thoughts are always 'Well now, that's a good one to announce to the whole store. Have I taught this child nothing?' And I know I have, because the other three would come up and whisper these things to me if they were having the problem. I know...they've done it plenty of times.
Very rarely do any of these things make me cry on the spot. They usually just sit there in the back of my mind and then when something big happens and I'm devastated once again that my little baby has to deal with this illness. Kenny reminded me today of one of the times I did cry almost on the spot. It was Easter, and it had been a rough week with Noah. I had cried every day that week because I was so sad for him feeling so sad that week. We went to a park up in Corona where Kenny's parents go each year with their friends. It was spur of the moment, and we didn't plan to stay more than an hour because we were having my family over to our house in the afternoon. Long story short...we didn't bring food or drinks. Daniel asked Grandpa for a soda and Grandpa goes and gets him one from an ice chest. Whose it was, I don't know. The boys are standing over a storm drain grate in the middle of the grass looking down into the pipe. Daniel accidentally drops his soda and it splashes about. A few people chuckle a little and then the moment is over. Suddenly, Noah takes off and then rushes back to where everyone was standing by that grate in the grass. He's taken a soda out of someone's ice chest. It's not open yet. Boom, before anyone even had an idea of what he was doing, they were all being sprayed by the exploding soda Noah had just smashed on the drain grate. Luckily we were getting ready to leave anyway, so it was easy to get out without Noah thinking it was because of him. I cried silently all the way home because I wasn't prepared for that one. What are ya gonna do, ya know? Hey, now I look at the bright side...I didn't really like some of the people he sprayed, and we probably won't have to go to that event for Easter ever again. Ok, so that's not nice to say in public (or online)...but Noah would say it, so why can't I?
I started to think...well, isn't that the statement we need to live by when it comes to living with a bipolar child. Pray for the best, prepare for the worst. I know it sounds pessimistic, but it's not. If we prepare for the worst, then we're prepared to help Noah through whatever it is he's dealing with at the time. Not to mention that we won't be caught off guard, embarrassed or disappointed. Embarrassed for Noah, disappointed sometimes for both Noah and the other boys...like leaving Disneyland because Noah was having a balloon meltdown.
Recently, preparations have included trying to teach Noah to keep his voice down in public. I, personally, am always amused at what he has to say, but I have to keep a straight face or people might think I'm an awful mother who really doesn't care that her child is walking through Disneyland telling me (loudly) that if 'that African-American man was really black like people call them, then really he would be as dark as the black socks he is wearing'. Oh and Target is always a great place to watch people's reactions when your son yells down the aisle as he's on his way back from the bathroom that HIS STOMACH HURTS BUT IT WON'T COME OUT CUZ HE'S CONSTIPATED. Oh well, three weeks ago, at Target, it was that he still had diarrhea after he had been sick all week. My thoughts are always 'Well now, that's a good one to announce to the whole store. Have I taught this child nothing?' And I know I have, because the other three would come up and whisper these things to me if they were having the problem. I know...they've done it plenty of times.
Very rarely do any of these things make me cry on the spot. They usually just sit there in the back of my mind and then when something big happens and I'm devastated once again that my little baby has to deal with this illness. Kenny reminded me today of one of the times I did cry almost on the spot. It was Easter, and it had been a rough week with Noah. I had cried every day that week because I was so sad for him feeling so sad that week. We went to a park up in Corona where Kenny's parents go each year with their friends. It was spur of the moment, and we didn't plan to stay more than an hour because we were having my family over to our house in the afternoon. Long story short...we didn't bring food or drinks. Daniel asked Grandpa for a soda and Grandpa goes and gets him one from an ice chest. Whose it was, I don't know. The boys are standing over a storm drain grate in the middle of the grass looking down into the pipe. Daniel accidentally drops his soda and it splashes about. A few people chuckle a little and then the moment is over. Suddenly, Noah takes off and then rushes back to where everyone was standing by that grate in the grass. He's taken a soda out of someone's ice chest. It's not open yet. Boom, before anyone even had an idea of what he was doing, they were all being sprayed by the exploding soda Noah had just smashed on the drain grate. Luckily we were getting ready to leave anyway, so it was easy to get out without Noah thinking it was because of him. I cried silently all the way home because I wasn't prepared for that one. What are ya gonna do, ya know? Hey, now I look at the bright side...I didn't really like some of the people he sprayed, and we probably won't have to go to that event for Easter ever again. Ok, so that's not nice to say in public (or online)...but Noah would say it, so why can't I?
Thursday, August 19, 2010
Show and Tell
I mentioned in "Changes" that one of Noah's jokes was pretty funny and that I'd share it. Before I do, I gotta tell you...just in case you don't know my family really really well...that the saying "Boys will be boys" rings true in just about every aspect of life in the Sharkey household. I've discovered that these things aren't learned, they're inborn! Boys just come out laughing at their own farts, and yelling at their brothers for farting on them, and it continues through life. This gives way to hours and hours of father/son bonding. There's a reason we never had a daughter...she'd probably dress like Shiloh Jolie-Pitt!
Well, back to explaining myself before I share the nitty gritty. Hopefully I can share more later and I won't feel the need to explain it all first. I decided a long time ago, that if I couldn't beat 'em, I might as well just join 'em. So I joined, and I enjoy them. They love learning the words to songs I have changed to suit them. Like that Backyardigans cartoon theme song: Your back yard friends, the backyardigans; well thanks to me it's now Your back fart friends, the back-fart-agains. So instead of yelling at them for saying gross stuff, I join in, or I laugh with them, or I just shake my head and let them continue, but I also teach them that it's OK to do those silly things at home with their family, but outside our house it's not appropriate or allowed and girls will not like them when they're older if they are gross. So far, so good, except for the time when Daniel was 4 that he put an umbrella between his legs in the middle of Target and yelled to Noah, "Hey Noah, look at my big weenie!" Luckily the lady on the catfood aisle had grandsons so she knew just what I was going through at that moment.
So, on with the story. It was a hot day today and we had doctor visits and dentist visits and errands to run. When we got home everyone was glad to be out of the van. Boys all stripped down to their underwear once they got in the house and Evan needed a bath to cool him down. Noah told Grammie that his "cheeks" were sticking together, so she told him to put some baby powder on so he would be more comfortable. I didn't know this, and I walked past him after-the-fact, and noticed a dust cloud coming from his backside as he walked. I said "Noah, are you on fire? There's smoke coming out of your butt." Without skipping a beat, he tells me "Oh no, it's just 'smokin crack'!" Yes, we've also taught our children proper street terminology so that they know never to accept anything called 'crack' from anyone, drug or otherwise. Oh boy do I hope people following this blog can understand my sarcasm and humor. Like I said, if we don't just laugh at the things we can laugh at, then we'd spend most of our time crying.
You know, while we're on the subject of sharing...the support one gets from sharing with friends is a wonderful thing. I'm involved in an online support group for the parents of bipolar children, and it's so wonderful to chat with people who know what I'm going through. I learn alot, and I've been able to offer support to others as well. I thought I needed to start this blog, though, because I wanted to start documenting more of Noah's ups and downs, and it's hard for me to remember to sit down and write it out, but when I'm at the computer, I try to log on to whatever I need to all at once at night...check email, check the bank account, see what friends are up to on facebook, visit the CABF support group, and add a new blog post if there's something I want to document.
Since I've started this blog, I've had so much positive feedback from so many people. It's given me more strength to get through my days. People who knew about Noah's illness now have a better understanding of life at our house. But the best thing I think that has come out of it has been the support I am getting, and am able to offer, to friends I have who either didn't know I had a child with special needs, or have a child who I wasn't aware had special needs. My support group is great, but many times I have wished some of these moms lived here in So. Cal. rather than any number of different places across the country. And now, I have friends both who live close by and who I may have grown up with or gone to high school with, etc., who I can relate to even more now, and vice-versa. It's not just Facebook that helps us moms stay connected to our friends. Thank you all for your love and support, and those of you who have that first hand knowledge of special needs kids, I'm here anytime you need love and support!
Well, back to explaining myself before I share the nitty gritty. Hopefully I can share more later and I won't feel the need to explain it all first. I decided a long time ago, that if I couldn't beat 'em, I might as well just join 'em. So I joined, and I enjoy them. They love learning the words to songs I have changed to suit them. Like that Backyardigans cartoon theme song: Your back yard friends, the backyardigans; well thanks to me it's now Your back fart friends, the back-fart-agains. So instead of yelling at them for saying gross stuff, I join in, or I laugh with them, or I just shake my head and let them continue, but I also teach them that it's OK to do those silly things at home with their family, but outside our house it's not appropriate or allowed and girls will not like them when they're older if they are gross. So far, so good, except for the time when Daniel was 4 that he put an umbrella between his legs in the middle of Target and yelled to Noah, "Hey Noah, look at my big weenie!" Luckily the lady on the catfood aisle had grandsons so she knew just what I was going through at that moment.
So, on with the story. It was a hot day today and we had doctor visits and dentist visits and errands to run. When we got home everyone was glad to be out of the van. Boys all stripped down to their underwear once they got in the house and Evan needed a bath to cool him down. Noah told Grammie that his "cheeks" were sticking together, so she told him to put some baby powder on so he would be more comfortable. I didn't know this, and I walked past him after-the-fact, and noticed a dust cloud coming from his backside as he walked. I said "Noah, are you on fire? There's smoke coming out of your butt." Without skipping a beat, he tells me "Oh no, it's just 'smokin crack'!" Yes, we've also taught our children proper street terminology so that they know never to accept anything called 'crack' from anyone, drug or otherwise. Oh boy do I hope people following this blog can understand my sarcasm and humor. Like I said, if we don't just laugh at the things we can laugh at, then we'd spend most of our time crying.
You know, while we're on the subject of sharing...the support one gets from sharing with friends is a wonderful thing. I'm involved in an online support group for the parents of bipolar children, and it's so wonderful to chat with people who know what I'm going through. I learn alot, and I've been able to offer support to others as well. I thought I needed to start this blog, though, because I wanted to start documenting more of Noah's ups and downs, and it's hard for me to remember to sit down and write it out, but when I'm at the computer, I try to log on to whatever I need to all at once at night...check email, check the bank account, see what friends are up to on facebook, visit the CABF support group, and add a new blog post if there's something I want to document.
Since I've started this blog, I've had so much positive feedback from so many people. It's given me more strength to get through my days. People who knew about Noah's illness now have a better understanding of life at our house. But the best thing I think that has come out of it has been the support I am getting, and am able to offer, to friends I have who either didn't know I had a child with special needs, or have a child who I wasn't aware had special needs. My support group is great, but many times I have wished some of these moms lived here in So. Cal. rather than any number of different places across the country. And now, I have friends both who live close by and who I may have grown up with or gone to high school with, etc., who I can relate to even more now, and vice-versa. It's not just Facebook that helps us moms stay connected to our friends. Thank you all for your love and support, and those of you who have that first hand knowledge of special needs kids, I'm here anytime you need love and support!
Wednesday, August 18, 2010
Changes
It amazes me how things can change in so many different ways, and how fast those changes can happen. This week's changes have been happily received. Take baby Evan, for example. Over the last week or so, he has cut his first two teeth, he's drinking juice and learning to use a cup to drink it, he isn't using a baby seat in the bath tub anymore because he loves laying in the tub and splashing with his arms and legs, and today, he held his bottle for himself. So many changes in such a short time, and when you watch an infant as they learn those new skills, it's totally amazing.
Medication changes are always a difficult thing for us. During the first year that Noah was on medication, and before his diagnosis was Bipolar, we had a really rough time with some meds. Actually, one of the meds he was put on was what helped us discover that he was bipolar. His psychiatrist was thinking he may have had ADHD, and wanted to try putting Noah on Concerta (an extended release form of Ritalin). The weekend we started him on it, we went to Sea World. The kid talked non-stop the whole trip. I'm not kidding! People in the Shamu stadium were staring at us because our kid wouldn't shut up...and that's alot of talking to be irritating people in a huge stadium in an amusement park! I didn't know that wasn't a normal reaction to the medication...I was new to the world of drugging my child! He did finally stop talking that night, sometime around 1 a.m. I think he finally fell asleep in the middle of a sentence. Sometimes you just gotta laugh or else you cry. So we laughed the next morning, as we went about our day, cleaning up the house, laundry, playing with the boys, and taking pork chops out of the freezer to thaw for dinner. I sat them on the counter and went back upstairs to do more laundry. A few hours later, I came downstairs because I heard Noah in the kitchen looking for something to eat. He was frenzied about it. It was a weird thing to see. He was trying to eat everything in sight! As I glanced across the island counter, there they were...the package of 6 partially thawed pork chops...with only 5 whole ones and a quarter left of the 6th one. OMG...my son just ate a raw pork chop! As far as we know, it didn't make him sick. He's had stomach issues for most of his life, so it may or may not have upset his tummy, but if it did, it was nothing like salmonella or anything like that. We saw Noah's psychologist a couple days later, and when I told him about this incident, he linked it to Noah being bipolar. Stimulants (ADHD drugs like Ritalin) will send a bipolar person into a frenzied mania! We thought we had a good psychiatrist, but it turned out our psychologist was better. Needless to say, we quit that drug immediately, and stimulants have never again crossed the threshold of our house!
About three weeks ago, we changed Noah's antidepressant, which he takes for OCD, from Prozac to Zoloft. This was done because sometimes Prozac can make kids more aggressive, and I thought that might have been the case. We thought everything was going OK, until Noah started getting sad and extremely obsessive. It got so bad that Noah wouldn't get out of bed on Tuesday last week. Monday night he had told me that he was feeling so sad that he just wanted to stay in bed and not come out of his room, and when I got home from work on Tuesday, I found out that that was just what he did. I cried that night. I was afraid he was going to try to harm himself. I really hate to say things like "I thought he might try to kill himself." It sounds so harsh and extreme, but I've learned that I'm not overreacting when it comes to stuff like that. He was really down and I was really scared. Luckily we were seeing Dr. D, Noah's new psychologist the next morning. I told her right away, and she agreed that something needed to be done immediately. She called the front office and got Noah in to see his psychiatrist an hour later. Now we're back on the Prozac and we know that Prozac makes Noah a little more aggressive, and Zoloft takes away the aggression, but makes him extremely obsessive and depressed. Aggression is something we've been dealing with for a long time. I'll take that over the horrible OCD and major depression any day, thanks!
It's been a week since we made that switch, and what a difference a week makes! OK, so he bonked his brother in the back of the head today, and he's starting to tell stupid jokes again and laughs at himself even though they're really not funny (actually one of them was, and I'll share later), but he got out of bed smiling this morning. He went to the dentist with little resistance; even though he was obsessing last week about being scared to go this week. He had two consequences in the afternoon, but I'd much rather him not watching his favorite cartoon because he lost the privilege, not because he lost the desire.
Medication changes are always a difficult thing for us. During the first year that Noah was on medication, and before his diagnosis was Bipolar, we had a really rough time with some meds. Actually, one of the meds he was put on was what helped us discover that he was bipolar. His psychiatrist was thinking he may have had ADHD, and wanted to try putting Noah on Concerta (an extended release form of Ritalin). The weekend we started him on it, we went to Sea World. The kid talked non-stop the whole trip. I'm not kidding! People in the Shamu stadium were staring at us because our kid wouldn't shut up...and that's alot of talking to be irritating people in a huge stadium in an amusement park! I didn't know that wasn't a normal reaction to the medication...I was new to the world of drugging my child! He did finally stop talking that night, sometime around 1 a.m. I think he finally fell asleep in the middle of a sentence. Sometimes you just gotta laugh or else you cry. So we laughed the next morning, as we went about our day, cleaning up the house, laundry, playing with the boys, and taking pork chops out of the freezer to thaw for dinner. I sat them on the counter and went back upstairs to do more laundry. A few hours later, I came downstairs because I heard Noah in the kitchen looking for something to eat. He was frenzied about it. It was a weird thing to see. He was trying to eat everything in sight! As I glanced across the island counter, there they were...the package of 6 partially thawed pork chops...with only 5 whole ones and a quarter left of the 6th one. OMG...my son just ate a raw pork chop! As far as we know, it didn't make him sick. He's had stomach issues for most of his life, so it may or may not have upset his tummy, but if it did, it was nothing like salmonella or anything like that. We saw Noah's psychologist a couple days later, and when I told him about this incident, he linked it to Noah being bipolar. Stimulants (ADHD drugs like Ritalin) will send a bipolar person into a frenzied mania! We thought we had a good psychiatrist, but it turned out our psychologist was better. Needless to say, we quit that drug immediately, and stimulants have never again crossed the threshold of our house!
About three weeks ago, we changed Noah's antidepressant, which he takes for OCD, from Prozac to Zoloft. This was done because sometimes Prozac can make kids more aggressive, and I thought that might have been the case. We thought everything was going OK, until Noah started getting sad and extremely obsessive. It got so bad that Noah wouldn't get out of bed on Tuesday last week. Monday night he had told me that he was feeling so sad that he just wanted to stay in bed and not come out of his room, and when I got home from work on Tuesday, I found out that that was just what he did. I cried that night. I was afraid he was going to try to harm himself. I really hate to say things like "I thought he might try to kill himself." It sounds so harsh and extreme, but I've learned that I'm not overreacting when it comes to stuff like that. He was really down and I was really scared. Luckily we were seeing Dr. D, Noah's new psychologist the next morning. I told her right away, and she agreed that something needed to be done immediately. She called the front office and got Noah in to see his psychiatrist an hour later. Now we're back on the Prozac and we know that Prozac makes Noah a little more aggressive, and Zoloft takes away the aggression, but makes him extremely obsessive and depressed. Aggression is something we've been dealing with for a long time. I'll take that over the horrible OCD and major depression any day, thanks!
It's been a week since we made that switch, and what a difference a week makes! OK, so he bonked his brother in the back of the head today, and he's starting to tell stupid jokes again and laughs at himself even though they're really not funny (actually one of them was, and I'll share later), but he got out of bed smiling this morning. He went to the dentist with little resistance; even though he was obsessing last week about being scared to go this week. He had two consequences in the afternoon, but I'd much rather him not watching his favorite cartoon because he lost the privilege, not because he lost the desire.
Saturday, August 14, 2010
Where do you draw the line?
Sometimes I have a hard time telling my kids no and sticking to it. I know I'm not doing my children any favors by giving in to their every whim; I'm probably doing more damage than anything. They ask for a toy and I tell them no. They beg and I tell myself that I had children to love them and see them happy, and if a toy makes them happy, then they should have it. Yes, I know this is a problem, and over the past few months I've really stepped it up as a parent. It's getting easier to stick to my guns, and the more I do, the less tantrums I deal with each time. Who knew?!
The hardest part of all this...is Noah. On the one hand, he can't be handled the same as the other boys most of the time; on the other hand, he can't be allowed to get away with everything because he has some mental disorders. It's really hard, sometimes, to know when he needs to be handled differently and when he needs to be handled the same as his brothers. And with the latter, it's guaranteed that he won't react the same as his brothers do. I think we're supposed to handle things with him the same way as with everyone else more often than not. Problem is, Noah's reactions wreak havoc on the rest of the house. He lashes out at anyone who is involved with him not getting his way; most of the time that would be Daniel, Adam, or Andrew, and lately it's been me alot. It's not usually Kenny or Grammie. In the past, he's kicked holes in the wall, broken things, thrown things (once he went through the pantry and threw the container of coffee all over the kitchen floor), and tried to seriously hurt people (he tried to bash Adam in the head with a hammer one day...luckily I was right there!). I guess it's obvious that we don't frequently leave Noah alone, especially alone with his brothers. Let it be noted that when outsiders are around, or Noah is out of his element, everything is different and he holds it together...a classic behavior for bipolar kids. These days, it's been hard for him to hold it together when he gets upset in public. Anger isn't the problem, but meltdowns and crying are.
Take Disneyland, for example. First thing Noah wanted to do when we got there was go on Space Mountain. Of course, the ride was down at that time. No problem, it'll be running again soon, so we'll come back. Later that evening, back we went...literally...entering the ride through the exit as we are allowed to do with Noah's Guest Assistance Pass. Boy is that thing a day saver! With that, we enter the rides through the exit and only have to wait about 5 minutes maximum to board the ride. This is due to Noah's anxiety over going on the ride, waiting in line, and being in too big of a crowd of people for too long. Anyway, we get into the cars on the ride, get ready for take off, and boom...the ride shuts down and we have to get off because someone in the car in front of us decided they didn't want to ride and jumped out onto the tracks just before the ride took off. Thus, the ride had to be shut down for over an hour. Meltdown time!!! Once off the ride, Noah spots the balloon man with balloons that light up. He says one of those is the only thing that would make him not be upset. We couldn't go on any other rides with the balloon, I told him, so maybe we could get one on our way out of the park. What ended up happening was that was the reason we left the park! The meltdown escalated with Noah saying he couldn't live without the balloon, I was torturing him by not letting him have it, he didn't feel loved, and the list goes on. Oh how I tried to stand my ground on that balloon thing! Did I mention that the darn thing was $12.00?! I tried reasoning with him about not being able to go on more rides if we bought the balloon. I tried promising he could have it on the way out. I hugged him and told him how much I loved him. Nothing helped. He needed that balloon right then. At this point, the younger boys were telling me "Mom just get him the balloon and we'll go home." Which ended up being what we did, since no one was going to continue to have a good time with Noah having a meltdown through the happiest place on earth. It's heartbreaking to see my almost 12 year old having a tantrum over a balloon in the middle of Disneyland while my 9, 7 and 5 year olds are so mature that they tell me they'll leave the park and head home for Noah's sake.
I couldn't stand my ground there. We were in public. It was getting late and Noah hadn't had his daily nap, which he rarely misses because his meds cause drowsiness. Of course, it was an amusement park and everything in the place overstimulated him. I never said he couldn't have the balloon, I just said he needed to wait a while for it. That would have been enough for the other boys, and if it wasn't then they wouldn't get it at all. In this case, Noah had to be treated differently. Luckily we're finally at a point where the other boys understand that Noah may get away with things they don't. They should be rewarded more often just for accepting that! If Noah were the youngest, I could see how they should all be able to just deal with it, but he's the oldest, and not only are they understanding, but they aren't trying to get away with things by behaving like Noah. For a while they did, but they've been some much better about it since I've started standing my ground with them.
And of course, we'd never get through any of it without somehow laughing at the situation once in a while. In this instance, when we headed for the car to go home, Noah started feeling bad about ruining the rest of the night for everyone and he cried. And he cried. And he cried. Sitting next to Daniel in the back of the van, he was sobbing about how he didn't deserve to be loved and he didn't feel loved, etc. and Daniel, sweet Daniel, yells out "Do I have to sit back here with him?!" I had to laugh, I don't know why, but it was funny. We made it home, and that night, sleep was a wonderful thing. Everyone woke up the next morning thanking us for taking them, thinking nothing of Noah's upset, and Noah was none the worse for wear either.
Back at home, and with the help of weekly visits to our new psychologist, we're sticking to things alot more. Chores, rules, schedules. I'm having a bit of a hard time with the consequences for Noah, but we'll get there. This month, Noah's big thing has been hope. He has no hope. Is there any hope? There's nothing left to hope for. For me, there's more hope now than there's been for a long time. It's a hard road, but each day brings us closer to getting more of the help we need, and hopefully, seeing the sparkle return to Noah's eyes. And I share that with him each night when I tuck him into bed.
The hardest part of all this...is Noah. On the one hand, he can't be handled the same as the other boys most of the time; on the other hand, he can't be allowed to get away with everything because he has some mental disorders. It's really hard, sometimes, to know when he needs to be handled differently and when he needs to be handled the same as his brothers. And with the latter, it's guaranteed that he won't react the same as his brothers do. I think we're supposed to handle things with him the same way as with everyone else more often than not. Problem is, Noah's reactions wreak havoc on the rest of the house. He lashes out at anyone who is involved with him not getting his way; most of the time that would be Daniel, Adam, or Andrew, and lately it's been me alot. It's not usually Kenny or Grammie. In the past, he's kicked holes in the wall, broken things, thrown things (once he went through the pantry and threw the container of coffee all over the kitchen floor), and tried to seriously hurt people (he tried to bash Adam in the head with a hammer one day...luckily I was right there!). I guess it's obvious that we don't frequently leave Noah alone, especially alone with his brothers. Let it be noted that when outsiders are around, or Noah is out of his element, everything is different and he holds it together...a classic behavior for bipolar kids. These days, it's been hard for him to hold it together when he gets upset in public. Anger isn't the problem, but meltdowns and crying are.
Take Disneyland, for example. First thing Noah wanted to do when we got there was go on Space Mountain. Of course, the ride was down at that time. No problem, it'll be running again soon, so we'll come back. Later that evening, back we went...literally...entering the ride through the exit as we are allowed to do with Noah's Guest Assistance Pass. Boy is that thing a day saver! With that, we enter the rides through the exit and only have to wait about 5 minutes maximum to board the ride. This is due to Noah's anxiety over going on the ride, waiting in line, and being in too big of a crowd of people for too long. Anyway, we get into the cars on the ride, get ready for take off, and boom...the ride shuts down and we have to get off because someone in the car in front of us decided they didn't want to ride and jumped out onto the tracks just before the ride took off. Thus, the ride had to be shut down for over an hour. Meltdown time!!! Once off the ride, Noah spots the balloon man with balloons that light up. He says one of those is the only thing that would make him not be upset. We couldn't go on any other rides with the balloon, I told him, so maybe we could get one on our way out of the park. What ended up happening was that was the reason we left the park! The meltdown escalated with Noah saying he couldn't live without the balloon, I was torturing him by not letting him have it, he didn't feel loved, and the list goes on. Oh how I tried to stand my ground on that balloon thing! Did I mention that the darn thing was $12.00?! I tried reasoning with him about not being able to go on more rides if we bought the balloon. I tried promising he could have it on the way out. I hugged him and told him how much I loved him. Nothing helped. He needed that balloon right then. At this point, the younger boys were telling me "Mom just get him the balloon and we'll go home." Which ended up being what we did, since no one was going to continue to have a good time with Noah having a meltdown through the happiest place on earth. It's heartbreaking to see my almost 12 year old having a tantrum over a balloon in the middle of Disneyland while my 9, 7 and 5 year olds are so mature that they tell me they'll leave the park and head home for Noah's sake.
I couldn't stand my ground there. We were in public. It was getting late and Noah hadn't had his daily nap, which he rarely misses because his meds cause drowsiness. Of course, it was an amusement park and everything in the place overstimulated him. I never said he couldn't have the balloon, I just said he needed to wait a while for it. That would have been enough for the other boys, and if it wasn't then they wouldn't get it at all. In this case, Noah had to be treated differently. Luckily we're finally at a point where the other boys understand that Noah may get away with things they don't. They should be rewarded more often just for accepting that! If Noah were the youngest, I could see how they should all be able to just deal with it, but he's the oldest, and not only are they understanding, but they aren't trying to get away with things by behaving like Noah. For a while they did, but they've been some much better about it since I've started standing my ground with them.
And of course, we'd never get through any of it without somehow laughing at the situation once in a while. In this instance, when we headed for the car to go home, Noah started feeling bad about ruining the rest of the night for everyone and he cried. And he cried. And he cried. Sitting next to Daniel in the back of the van, he was sobbing about how he didn't deserve to be loved and he didn't feel loved, etc. and Daniel, sweet Daniel, yells out "Do I have to sit back here with him?!" I had to laugh, I don't know why, but it was funny. We made it home, and that night, sleep was a wonderful thing. Everyone woke up the next morning thanking us for taking them, thinking nothing of Noah's upset, and Noah was none the worse for wear either.
Back at home, and with the help of weekly visits to our new psychologist, we're sticking to things alot more. Chores, rules, schedules. I'm having a bit of a hard time with the consequences for Noah, but we'll get there. This month, Noah's big thing has been hope. He has no hope. Is there any hope? There's nothing left to hope for. For me, there's more hope now than there's been for a long time. It's a hard road, but each day brings us closer to getting more of the help we need, and hopefully, seeing the sparkle return to Noah's eyes. And I share that with him each night when I tuck him into bed.
Wednesday, August 11, 2010
Being A Parent
I've heard so many quotes about what it's like to be a parent. One of my favorites is this: "The decision to have a child is to decide forever to have your heart go walking around outside your body." What the quote doesn't say is how painful it sometimes is to have that little heart hurting and knowing you can't fix it no matter how hard you try.
We've known pretty much since Noah was born that he had a difficult time with feelings, both physical and mental, and emotions. He was so easily overstimulated as a newborn that we really had to watch what we did with him. At six weeks old, his grandma held him and the smell of her perfume made him so upset that he cried for nearly two hours. I couldn't calm him down and I didn't know what was wrong. Finally, after having a bath, he calmed down completely, though I still didn't know what the problem had been. It wasn't until some time later when the same thing happened after his aunt held him while wearing a very noticeable amount of perfume. He even had a rough time if we rearranged his bedroom and moved his crib. Who knew a five month old baby could tell that his crib had been moved?
There were the night terrors when he was two, a bizarre attachment to the vacuum at three, the fear that the a/c vent in the hallway was going to suck him up into the duct when he was four, which, by the way, was what caused us to get him into counseling. Generalized Anxiety Disorder. I guess it's hard to diagnose more than that in a four year old. Kindergarten revealed more pieces of the puzzle. Teachers saw Noah in a setting outside of what he was comfortable with. They told me their concerns and I told them I worried about him because he seemed so much like my younger brother when it came to learning abilities, or disabilities I guess I should say. Normally, the schools won't perform the psychoeducational testing until a child is in third grade, but we found ourselves reading the final results and reports of these tests at the end of kindergarten.
I worried once during first grade when Noah said he was so sad that he wanted to die. Did a first-grader really know the meaning of dying? Could a seven year old act on something like that? Somehow the discussion came up while talking with friends about our kids at bunco one night. Nicole was a therapist, which I didn't know. She said it wasn't something to be taken too lightly no matter what the age, and offered to see Noah.
Between the school's diagnosis of learning disabilities and Nicole's diagnosis of Asperger's Syndrome, it started to sink in, and I cried for days. But we got through it. Noah was still a smart, funny, sweet, and happy little boy. We went about our days, not thinking that these things would ever really affect our family life. We just focused on helping Noah feel secure and productive. And productive he was! Kindergarten was hard, and he started first grade with a beginning kindergarten reading level, also known as a 0. Towards the end of first grade, his teacher called home, from her classroom, during class, crying...literally, and telling me she couldn't wait until after school because she was so thrilled that she had just tested Noah's reading level and he was reading at a mid-second grade level.
He never slowed down when it came to reading. He was always above grade level. What got me was how he could read a word time and time again, but if asked to write it down, he spelled it wrong. Ahhh, so that's what the learning disability was. It's a processing disorder. Information goes it without a problem, but it comes out all jumbled up. It's all good, we thought; this could be fixed. Some of the most intelligent and successful people in the world have learning disabilities.
Then the behavior problems started. He was impulsive and destructive; he had no boundaries and began having what we came to know as meltdowns. Behavior modification charts didn't work. Not attaining the goal of going so many days without a meltdown caused an even worse meltdown. Nicole recommended a psychiatrist. The psychiatrist recommended, what else, medication. It's funny how friends look at you when you tell them you've decided in favor of medicating your child. My thing wasn't that I wanted a normal child, or a child who didn't cause problems, or anything like that. My thing was that I wanted my son to feel okay inside. I wanted him to feel happy, to feel good about himself, to enjoy his childhood and not to worry and have anxiety attacks. And since all this had been going on for nearly five years and I had been unable to help him achieve those goals I had for him, I figured it was worth a try. And then it's funny how close you feel to those friends, who thought you shouldn't medicate, when they end up having to medicate one of their own. I guess it happens to the best of us.
And there is where we began the journey with Noah through the world of mental illness. And we cried, and we smiled through the tears at our beautiful baby boy. And we got to the point that we didn't really think about it as mental illness. Or maybe we hadn't actually thought about it in that way at all yet because it seems that it's all just hitting us now. I guess I never really wanted to think, or have to say that my son had a mental illness. Not because I was ashamed of it, but because I didn't want people to think that I was exaggerating, or looking for sympathy, or anything like that. Heck, most days I think we hurt poor little Noah more by not making more of it than we do. We've still got a lot of learning to do when it comes to raising five little boys with the oldest one having mental illnesses. But the good news is that in the last month, so many doors have opened for us on this journey. A new school, a great psychologist, and lots more help is on its way...to help us on the journey with our little Pumpkin Pie, Baby Love...Noah Boy.
We've known pretty much since Noah was born that he had a difficult time with feelings, both physical and mental, and emotions. He was so easily overstimulated as a newborn that we really had to watch what we did with him. At six weeks old, his grandma held him and the smell of her perfume made him so upset that he cried for nearly two hours. I couldn't calm him down and I didn't know what was wrong. Finally, after having a bath, he calmed down completely, though I still didn't know what the problem had been. It wasn't until some time later when the same thing happened after his aunt held him while wearing a very noticeable amount of perfume. He even had a rough time if we rearranged his bedroom and moved his crib. Who knew a five month old baby could tell that his crib had been moved?
There were the night terrors when he was two, a bizarre attachment to the vacuum at three, the fear that the a/c vent in the hallway was going to suck him up into the duct when he was four, which, by the way, was what caused us to get him into counseling. Generalized Anxiety Disorder. I guess it's hard to diagnose more than that in a four year old. Kindergarten revealed more pieces of the puzzle. Teachers saw Noah in a setting outside of what he was comfortable with. They told me their concerns and I told them I worried about him because he seemed so much like my younger brother when it came to learning abilities, or disabilities I guess I should say. Normally, the schools won't perform the psychoeducational testing until a child is in third grade, but we found ourselves reading the final results and reports of these tests at the end of kindergarten.
I worried once during first grade when Noah said he was so sad that he wanted to die. Did a first-grader really know the meaning of dying? Could a seven year old act on something like that? Somehow the discussion came up while talking with friends about our kids at bunco one night. Nicole was a therapist, which I didn't know. She said it wasn't something to be taken too lightly no matter what the age, and offered to see Noah.
Between the school's diagnosis of learning disabilities and Nicole's diagnosis of Asperger's Syndrome, it started to sink in, and I cried for days. But we got through it. Noah was still a smart, funny, sweet, and happy little boy. We went about our days, not thinking that these things would ever really affect our family life. We just focused on helping Noah feel secure and productive. And productive he was! Kindergarten was hard, and he started first grade with a beginning kindergarten reading level, also known as a 0. Towards the end of first grade, his teacher called home, from her classroom, during class, crying...literally, and telling me she couldn't wait until after school because she was so thrilled that she had just tested Noah's reading level and he was reading at a mid-second grade level.
He never slowed down when it came to reading. He was always above grade level. What got me was how he could read a word time and time again, but if asked to write it down, he spelled it wrong. Ahhh, so that's what the learning disability was. It's a processing disorder. Information goes it without a problem, but it comes out all jumbled up. It's all good, we thought; this could be fixed. Some of the most intelligent and successful people in the world have learning disabilities.
Then the behavior problems started. He was impulsive and destructive; he had no boundaries and began having what we came to know as meltdowns. Behavior modification charts didn't work. Not attaining the goal of going so many days without a meltdown caused an even worse meltdown. Nicole recommended a psychiatrist. The psychiatrist recommended, what else, medication. It's funny how friends look at you when you tell them you've decided in favor of medicating your child. My thing wasn't that I wanted a normal child, or a child who didn't cause problems, or anything like that. My thing was that I wanted my son to feel okay inside. I wanted him to feel happy, to feel good about himself, to enjoy his childhood and not to worry and have anxiety attacks. And since all this had been going on for nearly five years and I had been unable to help him achieve those goals I had for him, I figured it was worth a try. And then it's funny how close you feel to those friends, who thought you shouldn't medicate, when they end up having to medicate one of their own. I guess it happens to the best of us.
And there is where we began the journey with Noah through the world of mental illness. And we cried, and we smiled through the tears at our beautiful baby boy. And we got to the point that we didn't really think about it as mental illness. Or maybe we hadn't actually thought about it in that way at all yet because it seems that it's all just hitting us now. I guess I never really wanted to think, or have to say that my son had a mental illness. Not because I was ashamed of it, but because I didn't want people to think that I was exaggerating, or looking for sympathy, or anything like that. Heck, most days I think we hurt poor little Noah more by not making more of it than we do. We've still got a lot of learning to do when it comes to raising five little boys with the oldest one having mental illnesses. But the good news is that in the last month, so many doors have opened for us on this journey. A new school, a great psychologist, and lots more help is on its way...to help us on the journey with our little Pumpkin Pie, Baby Love...Noah Boy.
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