I always knew that there was something different about my son since he came into this world. Straight from the womb, he was bright-eyed and alert. I remember him turning his head to look at people talking to him at just a day old. He wasn't a fussy baby at all. Very easy-going. However, he was very stimulated by sight, sounds and smells. He did not sleep like other newborns. It seemed as though he was awake more than he was asleep. He also had reflux after almost every feeding, no matter what we tried. So, this exhausted Mommy would finally lay her sleeping baby down thinking he was not going to reflux and up it would come a few minutes later...soaking his clothes and his bedding. This, in turn, would make him wide awake again....for hours. Then it would be time for another feeding and hopefully reflux before I laid him down again. A change of clothes and then soothe him to sleep. Finally....asleep.....for 2 hours...hopefully! As he got older, it became more difficult. Any sound would wake him. Trust me, I didn't start out being the quiet Mom. I wanted him to be adjusted to sleep through household sounds. That....was turning out to be for other babies, not mine. The slightest little sound would pop him up in his crib. I would turn off the phone, the tv and shut the front door if I was trying to rest in those precious moments while he slept peacefully. I would cringe if a car drove by our house because without a doubt, I would soon hear him rustling around in his covers. I broke down crying on many occasions due to sheer exhaustion. I even made an appointment with a Pediatrician. I remember the Pediatrician walking into the room and saying under his breath, "...the nerve of these Mother's wanting me to make their children sleep now". I quickly informed him that I was not just some young Mother who did not understand young children. I knew children! I had worked with children for nearly 10 years (at that point). Heck, even before that. I started baby sitting our neighbors kids when I was in 4th grade. I have always been the one taking care of the babies in the family, the neighborhood and for friends. I knew what babies were supposed to do and how they do it. I knew something was different about MY CHILD. Needless to say, the Doctor did not prove to be very helpful. I found swaddling to be the most soothing for him, but it was hard trying to not shed a tear or two when your baby is squirming and crying trying to wriggle out of his coccoon....fighting it every step of the way. There was a period from about 7-9 months of age that he followed a schedule of wake, eat, play, eat, sleep.
As a toddler, he quickly figured out how to climb out of his crib. This created a new problem. I tried the "put them back in bed, over and over and over again" method. Yeah, this was not a good method for a child with a duracell battery pack. Swaddling during this age was not ideal, but certainly proved helpful in putting him to sleep. He still maintained his usual routine of waking up several times during the night and trying to get into our bed. He also remained hypersensitive to sounds and smells. If he smelled a neighbor's dinner wafting through the window, his eyes would fly open and he'd say, "Mommy, what's that smell?" That would send the whole process back to square one. I tried my best to "wear him out" during the day. Needless to say, he had an untapped energy reserve from which to pull and could outlast either parent. By pre-school, he could be put to bed with one of us sitting close by to ensure that he did not get up and wander around. It still took at least an hour for him to wind down. I asked him one time why he kept moving his legs while lying next to him in bed. He told me that it was because his legs wanted to keep running. Bless his heart. His body just did not want to slow down! He still woke up throughout the night, several times. He was always wide-awake no later than 7:00a.m. everyday....no matter what time he finally fell asleep or how many times he awakened during the night.
By first grade, he could be put to bed with a kiss and sometimes a story. He did not need supervision. He would not fall asleep for hours and still awakened several times during the night. He also began to have a few problems in school. He was very talkative. He would get out of his seat many times throughout the day, sometimes preferring to stand up to do his classwork. He was forgetful, inattentive and unorganized. Homework time was a nightmare. He would inevitably argue over every little detail. I had always thought of ADHD as super-hyper, aggressive children with behavioral disorders (like ODD) as well. I had worked with many ADHD/ADD children. I just didn't see my child as being classified in that group. He was personable, happy-go-lucky kid. I just didn't want to label him ADHD and give him meds. I wanted to explore other options. He was a bright child, so I figured that his needs were not be met at school. He wasn't being challenged enough. I thought his new second grade teacher was not understanding that he was in a second grade classroom the year before (when he should have been in first). He was just bored. By third grade, the same complaints came in...talking, impulse control, getting out of his seat. Fourth grade rolled around and still the same complaints. His teacher, whom I admired greatly, let me know that he was receiving a lot of negative feedback for his behavior and that it might be affecting his self-esteem. She also stated that she helps him a lot, but other teachers may not. He could possibly fail higher grades if he did not get help. This really sunk in with me. I thought about what she said. I realized that he received a lot of negative attention at home. I thought, "what kind of life is that for my child...to get negative attention at home and at school...all day long. How is that NOT affecting how he perceives himself. Why am I not doing what I can to make sure he has a positive environment? If he has ADD, a medical condition...a learning disorder...why am I not doing what I can to make his life better for him?"
My son was seeing a Neurologist for other medical reasons and he had asked if Josh was on ADD medication once in his office. We had an appointment coming up with him that week. I decided to talk to him about it. He was happy I had asked since he had noticed Joshua's behavior during our visits. He prescribed him his first medication. We followed up with his Pediatrician for ADD (we had been released from the Neurologist after Josh got a medical clearance concerning the other medical issue). The first one ended up being too strong. We were told it was a "baby dose" and it wasn't made in smaller doses. So, the Doc switched to a new one. He stayed on that one for awhile. Josh began having near-fainting episodes. He had an echocardiogram to rule out an abnormal heart structure. He was cleared to remain on the med. We stayed on that medication for months. We moved and Josh began a new school. He began getting into trouble A LOT due to ADHD behaviors. His grades were dropping. He was also getting bullied relentlessly by other boys. He was called gay in some form or another daily. By fifth grade, he had more near-fainting episodes combined with palpitations. The new Pediatrician changed his meds to a non-stimulant. That one made him worse and he was getting into even more trouble at school. His bullying had increased as well. I was in contact with his teacher and Principal concerning his ADD. I kept his teacher informed of the changes and his heart issue. I discussed the bullying with them on many occassions. Josh had been kicked with cowboy boots (removing the skin on his shins), hit under the eye by a thrown piece of candy, had bruises up and down his arms from "frogging" to prove how tough he was and called every name in the book. He even got into a fight with one of his soccer team mates because the child called him "gay Lizzie McGuire" for the umpteenth time and kicked Josh in the shin. Josh snapped and began punching the kid. Josh was yelled at by the Coach. I followed up with the Principal the next day. The Principal actually said to me, "You know Josh has ADD and talks a lot. He interupts others and can be annoying to the other children because of that. That's why he is getting bullied. He draws attention to himself and brings it upon himself." He did not ask the names of the children or ask what could he do to help. Nope! He basically just let me know that due to my child having ADHD, he would be subject to harassment. I was furious. I immediately called the Superintendent. He was out-of-town so I spoke with his secretary. I told her what the Prinicipal had said. I asked her if my child were autistic and had behavioral issues that other children might find annoying, would he have said those things to that child's Mother? That it was the child's fault for being bullied?? I told her that I was going to do all that I could to find out what I could do about that. That logic was unacceptable. My son WAS NOT going to be the subject of "excusable" bullying because he had symptoms of ADD. She agreed. I had only been made aware of getting an IEP or 504plan the evening before. I was complaining to my cousin, Lorrie, and she mentioned them. I honestly was not aware that a child could get one of those for ADD. I told the secretary that I wanted to see about obtaining either of those for my child. She gave me the number to the Special Education Administrator. I called her and she asked me if I wanted to do the intelligence tests, even though they were not required. I told her that I would love to do that because my child is very intelligent, yet he is failing several classes. I wanted to show them that it was due to his ADD symptoms. After the testing, my son was denied an IEP based soley on his scores on the intelligence tests. You know, the ones that were not required. His teacher was thoroughly surprised that my son scored several grades above in many areas to include scoring a freshman in college in one area. I thought to myself....if you would have spent any time talking to my child, you might find out that he is more than just this kid with issues. Anyway, I did not know of an appeal and I thought that the determination applied to both IEP and the 504 plan. We continued on with Josh getting in trouble and struggling in school. One night, Josh woke me up and said that his heart woke him up because it was beating fast and hard in his chest and skipping around. He said he made his way to the bathroom, where he lost all vision and fell back into the toilet almost passing completely out. We went to the ER. He was tachycardia, but he stated he wasn't feeling as badly as when he was awakened. We went to the Pediatrician for a follow-up. All meds were stopped at that point. His Doctor wanted to put a referral in for a Pediatric Cardiologist and a Psychiatrist. He wasn't comfortable prescribing meds to Josh any longer. The Cardiologist was scheduling about 6-8 months out. Even without the ADD meds, Josh continued to experience near-fainting spells. He also began having arrhythmias. The Psychiatrist changed Joshua to new non-stimulant. It helped his symptoms in school somewhat. He only had a month of school remaining and he faired well. Sixth grade began in a new building. He started off with the same non-stimulant. It wasn't managing his symptoms well, but it was all we could do until the visit with the Cardiologist. I spoke with every one of his teachers during open house. I made them all aware of the ADD, the meds that were barely managing symptoms, his heart issues and the bullying. I even told them that I had attempted to get him an IEP/504, but was denied. Within the first month, Josh was given 5 days of detention as a first offense. A child who had called him names before was walking in front of him. Josh rushed around him and accidentally bumped him. That child responded by saying, "watch it faggot!" My son replied, "f you". My son went to a teacher nearby and reported it. He didn't hold back and told what he had said as well. They were both sent to the disciplinarian. They both received 5 days of lunch detention. I was told by the Asst. Principal (disciplinarian) that Josh should not respond to bullies or he would get into trouble as well. That he just needed to not say anything at all and just report the bullies. I explained to him that after being bullied since he began school here a year and a half ago, my son was getting pretty sick of it. He had turned into a different child and was starting to fight back. He changed in his personality as well. He was irritable, emotional and just not the happy kid he used to be. He wasn't faring any better in his classes. He was forgetful, inattentive and impulsive. He would blurt out random things to the teacher when they were supposed to be reading or working. One teacher referred him to lunch detention nearly everyday. So many things happened in the months following...bad things...really really bad things. I will save those for another post about bullying.
The psychiatrist never mentioned any behavioral modifications other than telling my son to put his hand over his mouth to control his talking/blurting stuff out. We couldn't change any meds because we were still waiting to see the Cardiologist. After many incidences, I called the Special Education Administrator in September to try to get an IEP/504 again. I told her about some of the issues and she stated that she would get it in motion. After a two months, I called to see where we were in the process. The Administrator asked me, "So were you wanting a 504 or IEP or what?" I was stunned that she hadn't called me at any time to ask so that we could progress in the process. I told her that I did not know the difference. She told me to research it online and get back with her. She also asked me if we wanted to put Josh in a Special Education classroom. I asked her if she meant for testing or quiet time to complete work? She stated that she meant full-time. She said that she had talked with all of Joshua's teachers and she felt that the Special Education classroom would be best for him. I mentioned, "Well...my son had an intelligence testing done and was denied an IEP/504 because he scored in the 8-9th grade levels while he was in 5th grade. He had also scored a freshman in college on one area, but you feel that he would be best served in a special education classroom?" She said, "Well, talk it over with your husband and get back with me tomorrow." I told her that we had an appointment with a Pediatric Cardiologist concerning some cardiac issues the following day. I explained everything to her and how I had told all of his teachers about first aid procedures in the event he passes out or begins having arrhythmias during class. She told me that we could add his medical needs to the 504. I called her after Joshua's appointment and let her know that 1) we were not interested in the special education classroom, 2) the pediatric cardiologist had written out special instructions for Joshua that needed to be implemented into his plan and were to begin immediately, 3) we wanted the 504 plan (we did not want to chance being denied again based testing results). I even went to her office to drop off a copy of the doctors written script to be implemented into the plan. I provided copies to the school as well. This was in NOVEMBER. December passed. January passed. More incidents happened, many many more detentions that my son incurred....finally I called and asked her what the hold up was. She said, "Oh, are you still interested in the 504 plan?" Ummm....YES!!! I went to her office to speak with her. She had not even begun to write the 504. She didn't even remember me dropping off the Cardiologists instructions. She asked me what I wanted in the 504. I listed important things that I felt would help him. She said that we would be met with resistance from the Principal. I specifically wanted it to mentioned that a teacher would not be allowed to single my son out in front of the class for his behavior/make fun of him. I had reported one of his teachers recently for saying "Duh, Josh" whenever my son realized something pertaining to what she was teaching. The class was also now saying it to him in the classroom and laughing. The children would back her up and say, "Yeah Josh, Duh!" She also said, "Why can't you learn like the other children?" and she made a big deal out of him drinking his water to stay hydrated (which was part of his cardiologists orders to prevent fainting). She would ask, "Why can't you just be like the other kids?" Finally five months later in February, we had our 504 meeting with my son's teachers. It was a very watered-down version of a 504. It pretty much pertained to his heart issues and not so much to help with his ADD issues. On one of the areas, it asks the teachers to check his planner to make sure he has written down the day's assignments. The teacher mentioned above commented that she did not have time to check every student's planner to make sure they write in it. I told her that I was not asking her to check EVERY child's planner, just MY child's. Also, since the teachers had smart boards, it was asked that they print out copies of the notes on the board as my son had an issue of seeing notes on the board and being able to write them to paper. The above teacher did not provide notes at all until my husband went into her classroom 2 weeks later and asked her to start doing it. She did it for about 2 weeks and then stopped. During this time, Joshua started on new med combined with his non-stimulant. It was too strong and caused him to be angry, emotional and off-the-charts hyper. He was changed to a lesser doage. Also at this time, the height of his bullying peaked and a major incident happened. I pulled my son out of school for three days. I also received a referral to a Therapist from my son's ADD Psychiatrist. She felt it would help with the school issues. When he returned, things changed somewhat (but not really). My son began having more arrhythmias and tachycardia. He had to wear a 30 day monitor during the months of March and April. The principal gave my son one final detention for 3 days during the last week of school in May. It was because he told a child who had called him faggot many times in the past (he had reported it to teachers), who kept interrupting his conversation to "Be quiet. Nobody is talking to you." My son received detention because the child added "nobody likes you" to his complaint, even though the other child involved in the conversation denied that that part was said at all by Josh or anyone involved. My son received detention because his remark was "rude and insulting." It was at this time that we decided to move. My son was not to attend this school next year.
So, skip to new school. I talked with the new counselor about my son's 504 and asked if we had to get a new one coming into their school. He said that we did. We did that. It is basically the same as the previous one. I did not have any knowledge about how he was going to do in this school. I was hoping for the best. He continued seeing his Therapist. He continued seeing his Psychiatrist and started his two meds back up for school. He also had to go back to his Cardiologist because he had arrhythmias during the summer. He also continued to have ADHD/ADD symptoms. He was talking incessantly and impulsive (getting out of seat while teacher was talking). He received 3 detentions in the first month. I asked his Therapist if she could also help us with his ADD issues because his Psychiatrist only tells him to cover his mouth. I told her that I had read many books and we had tried many meds, but I just couldn't figure out something that worked. I was at a loss on what to do. She began working with him/us. After I was called in for a parent-teacher conference after his fourth detention, I called his Psychiatrist for help. She was very irritated upon our arrival. I told her about the detentions. I told her what the teachers had said about his talking and getting up during class. She began aggressively and loudly scolding my son. She told him that he needed to cover his mouth with his hand when he felt like talking. She told him that she now felt that all of the problems at his former school were not because of his teachers, but because of him (most of the issues had to do with bullying and how the issue was handled..it most certainly was not his fault). She also told us that she was running out of options and she could not dope our son up to make him mind. I am not one for medication anyway, so she was way off base here. I would rather my son NOT be on medication. My husband began asking questions. She informed my husband that she always charges us for only 30 minutes of her time, but that we always take 45 minutes or more. She said that she does not have time to talk about all the personal issues with us. She said that Josh needed to see a Behavioral Modification Specialist (first time I ever heard of that). I told her that we were seeing _____. She said, "Oh no. She is a Therapist! Not a counselor/doctor." I was thinking...wait, you referred us to her! My husband asked that maybe my son did not need medication then and could just see the Behavioralist. She told my husband that he was in denial. She said that she would write a script or not. She didn't care. Whatever we wanted. She didn't care. All said in a sarcastic tone. My husband told her that he was just trying to find out what was best for Josh, med or not or behavior modification. He didn't know what to do. She said that Josh needs to just close his mouth. She said that she did not have time for this. My husband said, "Fine. The next appointment, we will know that we only get 30 minutes and we should only talk about his meds and nothing else." She said that it was fine! My husband asked her why she was being aggressive and rude. She stated that she was not aggressive, she was just blunt and if he didn't like it..then? My husband said, "We are just trying to find out what to do. We didn't know you we only authorized thirty minutes. We have never heard of a behavioral specialist until today. My wife has asked you for help many times and you just tell her to tell Josh to cover his mouth with his hand. What kind of help is that?" She and my husband got into a heated argument and we left. My husband called our insurance provider and found out that she was authorized a 45-50 minute visit. If she needed more time, she could call and get it authorized. No biggie. He asked for a new psychiatrist. There is only 1 other pediatric psychiatrist in our area. We see him in late October. We met with my son's Therapist later that day. We told her of the appointment earlier that day. She was floored. She asked to meet back with us in a few days. She researched some behavior charts to start in the home and also gave us the number to a Behavior Specialist/Psychologist. She said that Josh needed to be seen to get a baseline on his ADD and do a Psych Eval since none had ever been done. She recommended that we start over from square one in treating Josh. We have independently starting giving Josh sublingual b12 and multi-vitamins.
He also take DHA/fish oil daily. That has helped. I saw results the first day. He is still....Josh. We heard back from the Behavioral Specialist and she cannot see Josh until late January. Yikes! With that said, I received a lot of information from her assistant. He informed me of the services she provides and how she can help us with behavior modification at home and assist us in the CORRECT 504 or IEP at school. I am very excited and hopeful for my son. I only want the best for him. I want to help him be able to help himself and set himself up for success! And that my friends....is where we are in this big ole ADHD/ADD maze! I cannot imagine the hoops parents must jump through when their child is autistic, mentally impaired or physically impaired or facing other issues. God Bless You All!
