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I have three grown daughters & 7 grandchildren ranging in age from 12 to 5. One of my grandsons, Dakota aka Cody who is now 12 years old, lives with my hubby & I & has for the past year & a half. He lived with us for almost 6 months prior to this most recent stay.
First, a little background. My middle daughter suffers from bi-polar disorder & ADHD & has a problem with taking her medications on a regular basis. My youngest daughter also has ADHD as do I, my eldest daughter does not have ADHD. Vicki, my middle daughter is Cody’s mom. Vicki has a younger son, Cody’s half brother Austin who is 6 who also has ADHD. I have other grandchildren who have ADHD. Cody’s pediatrician has said that many of his ADHD patients have at least one relative who have ADHD. There have been a number of studies that say that ADHD is genetic & I definitely believe it.
When Cody was younger, starting around the age of 2, he was an extremely “busy” child & quickly became “unmanageable” for his mom. We lived in the Pacific Northwest at the time so I was not around when the Vicki’s problems with Cody began. As he grew, the problems with attention & his inability to sit still for any amount of time grew as well. He was started on his first stimulant medication at 4 when his pediatrician first diagnosed him with ADHD. As time progressed, he was diagnosed with a multitude of different syndromes & mental illnesses. He has been diagnosed as bi-polar, with anger management issues, OCD, possible fetal alcohol syndrome, Tourette’s, Oppositional Defiant Disorder - the list goes on & on. Cody has been on many different high-powered medications to treat what I call the illness of the month as it seemed like every time he went to see the psychiatrist, there was a new diagnosis to add to the list. He also had an inpatient admission for 10 days due to his alleged Oppositional Defiant Disorder, which was right before Cody came to live with us the first time. All of these diagnoses are part of his permanent medical record & who knows how that will affect him in the future. With each new diagnosis, his medications changed & the follow up tests necessary for each one usually didn’t happen. He didn’t get his liver function checked, regular EKG’s, glucose checks & other diagnostic tests that are advised for people on the medications he was on. His growth has been stunted & he is a very slender kid, which is pretty standard fare for the meds he has taken & the ones he is now on.
Cody started spending long weekends & a week here & there with us starting just before he turned 5, we had moved to Minneapolis & my children all lived in SE Wisconsin so visiting was limited as both my husband & I worked full time & it was a full day drive each way. My daughter would warn me about all the issues that Cody was having & what I needed to watch for, what medications he had to take & when, all the standard information that you would give someone when your child would stay with them. The odd thing was that we never saw the problems Vicki would describe. Having raised children with ADHD, I saw nothing other than a busy kid who had problems sitting through say a television show & needed extra time to run around & burn off energy. He was on medication but it was an extremely low dose, not enough to make Cody sleepy, groggy or even calm. He kept us on our toes but we sure loved having him visit. We would go biking, hiking, fishing, canoeing, spent hours at the park & we always made sure that Cody had plenty of running around time so that he could burn off energy. What kid doesn’t need that?
When Cody was 7, his mom married his step-dad & the real problems began. Cody is not fond of his step dad & there was constant conflict. Rick has two children from a previous marriage & didn’t understand Cody’s challenges at all. Rick felt that Cody should be able to “control himself” without medication & if Rick’s kids didn’t do certain things, then Cody shouldn’t either. Cody’s inability to sit still during dinner was a huge problem as was his “pickiness”, his struggles in school were his own fault, he could do better if he wanted to, there was total inflexibility on Rick’s part. Because of financial problems, the family moved regularly & Cody went to school after school, he was never able to settle in & get the testing & help that he needed. It also added to Cody’s insecurity & he became fearful of making friends as he knew he wouldn’t be at that school for very long. Cody got to the point where he didn’t want to go back home after a visit here due to the amount of tension & unrealistic expectations that he had to deal with. We felt terrible for Cody but at that time, there was nothing that we could do other than to point out to Vicki & Rick that they needed to understand what Cody was going through. We took Cody for as many school vacations & as much of his summer vacation that we could to try & defuse the problems between Cody & his step dad. Unfortunately, it didn’t work, the conflict continued to build & build until things finally came apart when Cody was 9-1/2. By this time, we had made the decision to move closer to my children primarily because of Cody as we anticipated needing to help out with him. We are now about 200 miles from my kids.
Shortly after Christmas when Cody was in the 4th grade, all hell broke loose. Vicki called to tell us that Cody had started having monster temper tantrums, refused to do his schoolwork, was hitting his brothers & sister, he had become completely unmanageable. Vicki took Cody to his pediatrician who recommended that Cody go to an inpatient treatment center. We begged Vicki to bring Cody to us but she insisted that he be hospitalized. Cody was in Milwaukee for 10 days at which time the doctors made further medication changes & tried counseling Cody about his “anger”. The day after Cody was released, he got into a huge fight with his step dad that ended with Cody having a chipped front tooth & being scared half to death. The following day, Vicki brought Cody to us for his first long term stay which was a difficult thing for her to do. We enrolled Cody in the 4th grade, found a new pediatrician who I will call Dr. Tom & began trying to help Cody as best we could. Dr. Tom made some medication changes based on how Cody acted with us & his medical history. Dr. Tom had also worked at the same psychiatric hospital Cody had his inpatient stay at & said that he had never seen a child with as severe of a case of ADHD that Cody suffers from. We worked daily with Cody to get him caught up in school & on his severely lacking organizational skills. We never saw a temper tantrum, any anger issues, nothing. Cody was a joy to be around, a happy kid who loved to go outdoors & play as often as possible. He tried hard with his schoolwork, he wasn’t an A student but then again, that is not what we expected him to be. Cody is a very bright child but with his ADHD, sometimes things took longer to learn.
About 5-1/2 months after Cody came to stay with us, his mom was due to start having to pay child support. We had just started to receive child support from Cody’s father & my daughter was having financial problems as she has relied on the child support to supplement the family’s income. The day after school ended for the year, she came & picked up Cody to go back to live with her & his stepfather. We have never had guardianship of Cody, just Power of Attorney for his care. There was nothing that we could do to stop her from taking him. I fell into a pretty severe depression, as I knew that it was just a matter of time before all of the problems started up again & Cody would be the one to suffer.
Things stayed fairly quiet for a few months & then the whole cycle started all over again. The daily phone calls from Vicki complaining about Cody began, even Rick would call me to complain about how Cody didn’t listen, wasn’t doing well in school, wouldn’t clean his room, the same stuff over & over. By this time I had learned that there was nothing that I could say that would make them understand that Cody has severe ADHD & that you have to work with him, not just yell at him & expect him to respond although I kept saying it anyway. The situation escalated & Vicki made the decision to bring Cody to us once again to live.
We enrolled Cody in the 5th grade & took him back to Dr. Tom. Dr. Tom, who I absolutely adore, felt that the new medications that Cody had been put on while living with his mother were part of the problem. We decided on a new medication plan, weaned Cody off of some of the meds & started the new ones. He once again became his normal self, went to school happily & tried his hardest to do well. During the summer between 5th & 6th grade, we spent as much time hiking, canoeing, bird watching & camping as possible to give Cody a heavy introduction to nature & the wilderness. Cody loved being outdoors & would spend a lot of time looking at maps with Grandpa planning the next trip. He learned to put up a tent, paddle a canoe & gained confidence in his own abilities. He would collect rocks & driftwood & hiking a trail always took twice as long as Cody would examine everything he saw in close detail. We made sure he had field guides so that he could identify what he would find. It was a great learning experience for him & also for us as we were able to see things anew through Cody’s eyes.
In the 6th grade, Cody started having a few more problems with his ability to pay attention and stay fairly calm in class. To help Cody do his best in school, Dr. Tom actually came to the school on one of his rare days off to meet with Cody’s teachers to address what areas his teachers felt were problems. How many doctors do that??? We decided on different timing for his afternoon meds & that pretty much solved the problem for the time being. He did well in 6th grade, made a few friends & continued to grow & thrive.
Now, before the past 4 months, we had never seen a temper tantrum, anger problem or any of the endless complaints that my daughter had about Cody. Just in the past 4 months, Cody has had a few temper tantrums that we were able to determine were directly related to his eating food high in sugar, simple carbohydrates or when his medications are getting thin. Cody takes meds three times a day & when it gets close to the next medication time, he is more prone to getting angry, frustrated or upset. Once we cut sugar out of his diet & made a medication change (dropped one & added a different one), he has had no further problems with controlling his anger that is out of the ordinary. When Cody lived with his mom & step-dad, his diet was primarily high sugar – Kool-Aid, sugared cereals, cinnamon-sugar toast & so on which may help explain why we didn’t see the problems that his mom saw. There is a definite reaction to sugar, we can literally see facial changes that alert us to an upcoming tantrum. We have removed all sugary foods & drinks from the house as Cody will sneak them if they are available, he is a kid after all & temptation is great for sweets : ) This seems to have take care of most of the anger issues. As a kid, he will have times that he gets angry or frustrated, most of the time it is just Cody being a kid. If his meds get thin & he has what we call an “orc” moment, we deal with it.
Cody does take a fair amount of medication but we have learned that he needs the meds to be functional. We have tried “medication holidays” in the past & even Cody does not like the way he feels without meds, he was weaned off his meds carefully to be sure there are no problems. He says “his brain shakes”, he is unable to concentrate on even his favorite things for longer than a minute or two & he feels out of control. As much as we wish that there were strategies that worked for Cody that weren’t medications, we know that it is the correct path for him. At the suggestion of Dr. Tom, a few months ago, we had Cody evaluated by a child psychiatrist to be sure that the medications that he is on are appropriate, if there were other options that were available or if the psychiatrist had suggestions for his continued care. All of Cody’s records were sent to the psychiatrist so that they could be reviewed before our appointment. The psychiatrist spent quite a bit of time talking to me about my concerns & experiences & then spent another large block of time talking to Cody alone. At the end, the psychiatrist was very happy with his meds, felt that Cody was doing extremely well considering his level of disability & was a well-adjusted, happy kid. That made our day!
Cody is now in the 7th grade & he started to have a lot of problems in school. Because 7th grade requires a lot of organization & reading retention, neither of which are his strong suits, he began to fail at many of his classes. Once again, we requested testing for him to try & get him the extra help that he needed but the school “has its rules” & there was no help to be had for at least 60 days of watching him to see where the problems were & then there were no guarantees that there would be any help offered. I tutored Cody every night but the frustration level grew for the both of us. After a lot of thought & I must admit some bravery on my part, we decided to home school him with computerized assistance. It has only been a couple of weeks but his attitude towards school has already taken a huge boost. He is eager to do his schoolwork & says he is happy with the way that I teach, it is easier to understand & I am more fun : ) I am able to take the time to be sure he really understands what he is studying & if gets frustrated or starts fidgeting, he can take a break, burn off a little energy, clear his head & then go back to his work. The ability to adjust his school day & take the classes that are the hardest when he is able to pay the most attention is a major help to both of us.
Cody takes his medications daily & is monitored closely by Dr. Tom to watch for any potential problems. Thank goodness for Medicaid as his meds cost $950 a month! He is happy & healthy & is proud of the fact that is learning again. He is actually looking forward to his literature class as it includes books that he has wanted to read. He has a few friends, he continues to be a rather solitary child but that is my boy : ) He has a quick smile that melts ones heart, tries hard with his schoolwork, is always helpful & respectful to others & is our pride & joy. He kayaks, canoes, roller blades, x-county skis in winter & is a great singer & artist, he was the star of the school play last year. We hope that he continues to be the happy kid that he is & we will do whatever we can to help him be successful in whatever life brings his way.