Sunday, October 23, 2011

What Happened with Brendan...


For those of you who have no idea of the road we have walked, run, dragged-our-heels, and plodded along with our son Brendan, this will be enlightening to you. A word of warning: it will be a long post! Brendan is 13 now and to tell the story adequately, I need to start at the beginning…

Brendan was born close to noon on July 29th, 1998. I was 38 weeks and four days pregnant when Dr. Wheeler induced labor. I had had insulin dependent gestational diabetes during my pregnancy and Dr. Wheeler was concerned about the size of my baby so he induced me a bit early. Brendan weighed 8 pounds and 6 ounces when he was born. The only unusual thing about his delivery was the fact that the umbilical cord was wrapped around his neck twice. (Now that I am a labor and delivery nurse, I can tell you that while a nuchal cord is common, it is NOT common for it to be wrapped twice!) He did very well after delivery and we went home two days later.Brendan was an EASY baby! He was happy and contented and the most laid-back baby I had ever seen. (And 13 years later, I still haven’t met a better baby!)

I got very ill with Graves Disease within weeks of Brendan’s birth. When he was around 18 months old I had a thyroidectomy. My illness forced us to have some assistance with our two sons. At some point during this time, I remember he fell and hit his head on our concrete deck. I don’t remember his age. I don’t remember the exact circumstances. I only remember that we took him to Texas Children’s Hospital ER and they did skull x-rays and declared him to have a “mild concussion” and sent us home. At some point later (like around the time he was three) we took him back to TCH for a CT scan because he had started having migraine headaches. This too was “negative” for any abnormalities.

By the time Brendan started school, his behavior was…a bit…shall we say, energetic? He was a busy little boy and into everything. He had very little impulse control and had a very hard time getting through kindergarten. His first kindergarten teacher was new to teaching and had a very tough time maintaining control in her classroom. We observed the classroom and realized that she had FOUR “energetic” boys in her classroom! We spoke with the principal about the issue and the principal assured us that they had worked hard to make certain that the classes were balanced and that there was no large concentration of “energetic” children in any one class. THEN she called us back in a week later and told us that she had observed the class for a day and realized that there was indeed an issue in that class. She told us that since we had come to her with the problem, she wanted to offer us the opportunity to move Brendan to another teacher. She suggested her “best” teacher for his abilities and at semester Brendan was reassigned to another classroom. This proved to be an excellent choice and the new teacher was a much better fit…but Brendan had essentially lost the entire first semester of kindergarten!

During this time, I was a member of the Katy ISD re-zoning committee and knew that our subdivision was about to be re-assigned to a new school that was being built. Since all of our children would be attending this brand new school that fall we decided that it would be a better choice for Brendan if we hit “rewind” on his kindergarten year. I thought he wouldn’t really notice that he was repeating a grade! WRONG!! He noticed! He still is offended by that! I should mention here that he was academically ready for 1st grade…we just thought he would do much better if he had an opportunity to grow a bit more socially and emotionally.

We had noticed that Brendan seemed to have some problems with his vision so we took him for evaluation to a pediatric ophthalmologist. This doctor diagnosed him with “convergence insufficiency” and prescribed special glasses for him. We were also to place a patch over one eye for several hours each day. This therapy was done over the next year or so until the doctor said he was better.

Brendan was very popular at both schools. He had a bright, funny personality and loved everyone – and they loved him back! At one point during the year 2004, I was manning the ticket booth for the school carnival when he approached me with an adorable little blonde girl in tow.

“Mom, I would like you to meet my girlfriend, Hannah”

“Well, hello, Hannah! It is nice to meet you!” (I had no idea he even knew what a ‘girlfriend’ was – much less HAD one!)

“Mom…you need to shake hands!” (Was I just reprimanded on manners by my kindergartener? Yes! Yes, I was!)

Every time Randy or I would enter the school, some child would want to know where Brendan was.

At the same time, Brendan was struggling. The teachers at the new school put more and more pressure on us to have him evaluated for ADD or ADHA. We resisted and then resisted some more until finally in 2006, we gave in! We had many, many tests ran on Brendan. We went to a holistic specialist – he took hair samples (really??? hair samples?? I was very skeptical!) urine and blood samples and then put Brendan on a very strict diet that eliminated all sugar, artificial dye and I-can’t-remember-what-else…pretty much anything that he liked or would taste good. Brendan did great at the whole diet thing (far better that his mom would have!) and was good-natured about it. But none of it helped. About six months later, the holistic doctor put Brendan on a very strong drug.

One thing led to another and we ended up trying a very long string of many drugs. Our pediatrician wasn’t comfortable prescribing ADD drugs, so we had to see a psychologist for our prescriptions. Brendan did some better but we never really found the “magic bullet” for his needs.

In 2nd grade we had a very long, expensive battery of tests run on him at still another psychologist’s office which led to that doctor coming to the school and meeting with the teachers, counselor, principal and the special education administrator. Brendan was immediately given special education accommodations that included extra time to do assignments, shortened assignments and various other assistances.

He improved gradually over that year and by the end of his 3rd grade year the school was insistent that Brendan be placed back into “general education” with no accommodations. I was very concerned but bowed to the pressure and allowed them to take away the assistance. The principal assured me repeatedly during our final meeting that he could be re-admitted into the special education program at any time if he needed it.

Between 4th and 5th grade years, Brendan really struggled. We moved to a new neighborhood between these two grades and at the new school we started to encounter real problems. By semester I was in the principal’s office demanding that Brendan be given his special education accommodations again. I was told “absolutely not!” that the system did not work that way and there was no way that I had been told that he could be re-admitted. Brendan was failing and there was really nothing I could do to help except try harder to assist with assignments.

One night close to the end of the year, Brendan finally fell apart and told us that he had been severely bullied all year by a gang of children at the new school. When he would go to the lunchroom, one of them would shove his food to the floor. If he sat down at the learning table in the classroom, all the other children sitting there would scream “EEEEWWWW…!” and run to the other side of the room. If one child befriended Brendan, they were immediately threatened by one of the bully children and they bowed to the pressure and joined the gang. I was furious! How had the teachers and administration at the school not seen any of this? I fired off an email to his teacher, principal and counselor immediately. I received a phone call from the school counselor within hours. She had called Brendan into her office and reported to me that she felt he needed immediate evaluation by a psychiatrist. I got him in at 4:30 that night where the doctor discovered the abuse was worse even that Brendan had reported to us and he in fact had a suicide plan. He was eleven-years-old! I was beyond devastated! If I could have pulled him out of school then I would have. There were only twelve school days left, but let me assure you, I spend most of them at that school. My Dad took off the rest of his school year (he drives the bus for the Alma Arkansas ISD) and he and Mom drove to Houston to help us cope.

That was the summer of 2009. We spent the summer on no medication at all and worked hard at healing and coping. Brendan got better. I was in constant contact with the staff at the junior high were Brendan would be attending in the fall. We carefully selected his classes to make certain none of the abusive kids were placed with Brendan.

Brendan at the end of fifth grade -right before school was out-then at the end of summer of the same year.

School started and things seemed to bump along okay. The Theatre Arts teacher was wonderful with him and the assistant principal assigned to 6th grade worked so hard. The counselor also was a great help to Brendan. He just had so far to go and it seemed like every effort we made was not helping enough. He passed 6th grade. Barely. He made A’s in Theatre Arts and Physical Education, C’s and D’s in everything else. He made a C in reading but did not pass the state mandated TAKS test for reading so we got a letter at the end of the school year that he would be taking two reading courses and would not be taking PE in 7th grade.

I dreaded school starting. By the end of 6th grade, the work was becoming extremely difficult for Brendan. When school started this fall, Brendan really had a tough time. His day would begin at 6:30 when we would wake him in time to eat breakfast and jump in his clothes to get to school. He would arrive back home at 3:00 and start on homework. Homework lasted until bedtime. It was very tedious and difficult for him. I was tearing my hair out. He would require re-direction many, many times throughout the evening and we were later and later getting to bed.

I finally had a meeting with the school psychologist and the special education instructor for the school. I was told by the school psychologist that we would meet again to sign paperwork to have him reevaluated for special education. She also told me if our psychiatrist would sign paperwork confirming a diagnosis, the school would replace the special education accommodations that they had taken from him at the end of 3rd grade until we could get all the tests back. I had the paperwork signed and back to the school within 48 hours. However, when we met again, the school psychologist was on maternity leave and the special education administrator informed us that no special accommodations would be given at all and in fact she was doubtful he would qualify for any assistance through special education.

The assistant principal who continued to be so helpful called a meeting and tried to get some assistance placed anyway. In the meantime, we had been referred by the psychologist to have further testing through an outside source. My sister Dori found a very highly recommended clinic close to where she lives just outside of Dallas. We made several phone calls and filled out what seemed like reams of paper and finally we had an appointment at the Lawlis-Peavey PNP Center.

Brendan and I left home this past Tuesday to drive to Lewisville, Texas. My parents met us there for support and any assistance I would need. Below is the email I sent to Randy Tuesday night after we got back to our hotel…

DAY ONE

I am going to write this so you can read it as I can’t call to talk to you on the phone - Dr. Peavey doesn't want us discussing things in front of Brendan.

First thing this morning Dr. Peavey came out and showed us around the center. The waiting room had a "quite room" with music, two recliners and a television - separate from a regular waiting room with a sofa-type thing and a couple of chairs. Brendan was fascinated by the quite room and wanted to go chill in there. In the inner part of the office were several rooms: a conference room, a biofeedback room with a reclining chair and several computers, a medical testing room (scales, computer, exam table) a brain map room with chairs, computers and brain mapping equipment (scull caps etc.) a couple of interview rooms with a desk and two chairs and a bathroom. We were told we would rotate through these rooms (some of them more than once.)

Dr. Peavey sat down with us at the table in the conference room. This room had a toy box in the corner and Brendan gravitated to the toy box while she was going over the schedule for the day. He came over to us in about five or six minutes carrying a wooden tray that he had filled with colored blocks in a symmetrical (very pretty) pattern. Dr. Peavey's jaw dropped and she completely lost focus on what she was saying…shuffled us quickly out to the waiting room and took Brendan away to begin the testing process. RUDE! She really was! Daddy was total put off by her manner.

Dee, the receptionist gave me paperwork to do while they were working with Brendan. It was an inventory of what type of parent I was: controlling, mother-hen, relaxed, stressed, etc… That one was hard for me. I think I could honestly say I have every trait of the 50 or 60 on the page - at some point! Not always, but at some point…know what I mean? Anyway, I finished that and turned it in to Dee.

A few minutes later a man who introduced himself as Dr. Steve took me back to an interview room and spent the next 45 minutes or so asking me about how you and I were raised, what type of parenting we had, what type of parents we were, how we disciplined, etc. He seemed very supportive and impressed that we had so little divorce in the families and I was relieved that he was not judgmental about spanking etc. (told me he had done it with his three children). He had heard from Dr. Peavey about the block puzzle thing and told me that based on some of the testing he had results of he wondered if Brendan had any musical ability. I told him "as a matter of fact, he does…somewhat" and told him about the ocarina and his desire to play the sax. He told me he was not surprised and felt that it was likely that Brendan was gifted in some (maybe more than one) way. He gave me a book to borrow for the night about children that are misdiagnosed as behavior problems or learning disabilities when they are actually gifted.

I went back to the waiting room in time to meet up with Brendan for lunch. We were given a 45 minute break to go eat then back to the office. Dr. Peavey came out and spoke with Mom and I for a bit (Dad had gone back to the motel to rest). She apologized for her abrupt manner earlier in the day but explained she wanted to avoid discussing any "issues" Brendan might have in front of Brendan. She told me that so far it looked as though Brendan was very bright but he definitely had some weaknesses.

She explained that they had done a test with his eyes. She had a cord or string with three colored beads placed along the length. One end of the string is attached to the nose and the length is held straight out in front with a green bead falling at reading range, a yellow bead at mid-range and a blue at far range. She said typically when you are seeing equally in both eyes, you would see a inverted "V" shape when you focus on the yellow bead and the two more "V's" as you focus on each bead along the length. Brendan only saw one straight line when he looked at the near bead and parallel (railroad track) lines for the other two lines. She said this is a "convergence issue" and he would likely need four to six months of vision therapy to correct this. She said this could possibly be one of the reasons writing is difficult for him from the board to paper. I had the paperwork with me from Dr. Monte Stavis from when he wore the patch and then prism glasses (when he was 2 and 3 years old) so I pulled that out and saw the diagnosis was "Convergence Insufficiency"! Hmmm… confidence? I think not!

A medical doctor walked in then and took him back to the "medical room" and set him up to test what I finally figured out was the same kinesology type test that Dr. Dave Spicer in Ft. Smith does. He tested him by having him hold a metal rod in one hand and then used a probe on the opposite thumb to test several areas. It was interesting that this showed almost exactly what Dr. Spicer had reported back in the summer on him: neurotransmitters out of balance, heavy metal toxicity, mild allergy to dairy. I asked him about wheat but he said he saw no problems with any grains at all. Again, what Dr. Spicer said. He told me that he suspected the neurotransmitter issue was due to the heavy metal toxicity. I THINK Dr. Spicer said that the calcium lactate would take care of this? Will be interesting to see what they recommend…

Then they took Brendan into another room to do a biofeedback test while I went back to the waiting room. This was done by Dr. Tims. He came to the waiting room in a bit to get me and asked me a long list of questions about how Brendan deals with stress…does he cry, sweat, shake etc. Brendan didn't seem to know how to answer so I did the best I could. I went back to the waiting room again and left them to it. He spent about an hour back there then Dr. Tims came to get me again. He said Brendan had been very quick to pick up on the technique to calm himself down. He showed me on a computer graph how he was doing deep-breathing to calm his heart rate and tension markers down. Brendan had leads connected to his head, neck, shoulders and arms to measure the muscle tension. He said Brendan shows stress by sweating and breathing quickly. He reported that even asleep (he said he had fallen asleep for about 10 minutes during the test) Brendan's breathing rate was quite a bit faster than normal. He speculated that it might be a side-effect of so many years of stimulant medication. He had a small portable biofeedback unit that Brendan has brought back to the hotel with him. He places his thumb on a sensor and then has to slow his breathing to be in sync with a blue light that goes up and down on the side. When he does it correctly, he gets a green light and "points". Dr. Tims wanted Brendan to practice using this tonight. It is on the charger right now but Brendan is very eager for it to be ready to use before he goes to sleep. Dr. Tims said it should only stay on the charger 15 minutes at a time so it won't take long.

We went back to the waiting room and Terry, the other receptionist, went over the schedule for tomorrow and let us leave. It was 3:30. We have to be back in the morning by 8:00 and have a full day of more testing, another biofeedback session, brain mapping and then a final report around 2:30 that she said would take 30 minutes to an hour. I would like to conference call you in for that final test if you could work it into your schedule. I do know the medical doctor (can't remember his name) gave them some urine test kits to give to us to take home (neurotransmitters and heavy metals) - he has to avoid certain foods before the test so we will need to plan for it.

I am very tired but have hopes that we may find some answers. Let me know if you have questions you want answered…especially if you can't be available for the report tomorrow.

DAY TWO

Today has been another roller coaster ride. The doctors asked us to feed Brendan a high protein breakfast today with no sugar. The waffles provided by the hotel weren't an option so we went to IHOP and had eggs and sausage.

Dee the receptionist greeted us when we got to the clinic and Brendan was taken back immediately to start the EEG part of testing. He was attached to many electrode-type things all over his head. This made him miserable because they had to exfoliate first with a gritty substance and then use a gel-like glue substance to attach them. He had a cap on his head to hold the ones on his hair on and had clip things on his ears. The ones on his forehead were held in place with tape. When they finally got him all hooked up, he was like a hyper monkey on a short leash! The doctor running this part of the show asked Mom and I to go out to the waiting room and then kept Brendan in that test for most of two hours.

He finally came out of that and then was taken to another room for more cognitive testing with pencil and paper. After this bit was done we were released for lunch. We ate at Boston market and then came back for more testing. As we were leaving I ran into a gentlemen getting off of the elevator (as I was getting on) that I recognized as Dr. Lawlis. This was the first time I had seen him (he is the doctor that does the advising and counseling on the Dr. Phil show) but knew that it was in the plans for him to be with us this afternoon.

The testing in the afternoon involved more time in the EEG lab and a few more cognitive tests while I was filling out yet another profile about Brendan. Finally, around 2:30, we were all called back into the big conference room to have a final meeting. Dr. Lawlis was in this room sitting at a round table. He asked me to sit one seat away from him on his left. Mom and Dad were seated on my left. Dr. Steve came in and sat on Dr. Lawlis' right. This left two seats in the room: on on Dr. Lawlis' immediate left and on to the right of Dr. Steve. We chatted a bit about nothing in particular and then Dr. Tims arrived with Brendan. Dr. Lawlis asked Brendan to sit on his left and Dr. Tims took the remaining seat in the room.

Dr. Lawlis began by speaking to Brendan. He told Bren "I want you to know something, Brendan. You are me!" Brendan didn't miss beat! He replied "Wow! What did we have for breakfast yesterday, then?" Dr. Lawlis threw his head back and guffawed! He explained to Brendan that when he was Bren's age, he was exactly like Brendan. He told him that one part of Brendan's brain was exceptionally bright - higher than gifted even. He explained to us that the frontal area of Brendan's brain is in "hyper-drive" all the time and the occipital (back of the head/top of the neck) area was very sluggish. After a bit, Brendan asked Dr. Lawlis if he could leave to go finish his test and Dr. Lawlis gave him permission to go ahead. Dr. Tims left with Brendan and then Dr. Lawlis started explaining everything to us in more detail. The rundown is:

1. Brendan's pre-frontal cortex is continuously in hyper-drive

2. The occipital area is slow and very difficult for Brendan to get it to function.

3. Brendan has severe dysgraphia and writing is very difficult if not impossible for him almost all the time.

4. Brendan has a very high level of heavy metal in his blood (Dr. Lawlis told us that 100% of the patients they had treated from the Houston area showed a heavy metal toxicity)

5. I already told you about the Convergence Insufficiency

Dr. Lawlis asked what we wanted to do to help manage all the issues we are facing with Brendan. I told him I wanted to know what his "dream plan" for Brendan would be. He told us "First and for most you MUST get him out of the environment he is in. The school is most detrimental to him. He is very fragile emotionally and mentally and leaving him where he is is dangerous." It was a bit quite in the room and I tried to process this. He then went on to tell us that he felt the very best solution for him right now would to be in a much smaller school district and to be away from Houston. He said it is essential that Brendan "be allowed to be a boy and to run and play and be outside without any worries about anything to do with schooling". He asked Mom and Dad if they were prepared to care for Brendan for the next three to six months at minimum. We had lots of questions. Did he want him to drop out of school for this time? The answer was no. Did he think we should homeschool him? No. He felt that a smaller school would be the most helpful. He said that Brendan needs the social interaction and challenge of being around other children but that he was "getting lost in the shuffle" of the much larger schools in Katy.

Dr. Lawlis said that he felt that after spending several months with Mom and Dad that we could consider taking him to a small private school closer to home. This would depend on how well he was doing at that point. We had mentioned several options yesterday for them to consider and Dr. Steve said that after looking at the options, he felt San Marcos Baptist Academy was a much better option than the Katy schools (due to size and student/teacher ratio). Both doctors indicated to us that Brendan is very gifted (or even higher) in certain areas but to allow him to realize his potential he needs to be in a different school situation. We are waiting on blood and urine test results. As soon as we know which heavy metal he has in his blood stream and what the level is, he will be started on chelation therapy for that.

He was given two machines to do therapy with. One of them was called a "BAUD" or "Bio Acoustical Utilization Device"…this uses earphones and emits two different high-frequency sounds - one in each ear. Brendan was to adjust the two sounds until they were the same volume and then find a frequency that was calming to him. This was confirmed by the brain wave pattern on the computer. Brendan is to use this for 20 minutes as he begins his homework. The second machine is a emWave machine. This is basically a "re-trainer" for breathing and pulse rate patterns. It has a pulse meter and after doing an initial measure, it shows a light moving up and down a meter. Brendan is to adjust his breathing to match the light. As he calms and his pulse slows, a red light at the top will change to blue and then on to green. Green is the goal. When he keeps the green light on successfully for several seconds, he is rewarded with a beep and "points" after he gains so many points then a chime sounds and he if finished with that round. He can do this as many times as he wishes. Last night he did three rounds before he fell asleep…and he slept all night! I was surprised at how well this worked.

Dr Lawlis told me that Brendan's brain wave pattern is NOT ADD or ADHD. He said it is very complex and that it would require a detailed study to analyze completely. Pretty much the main thing he could tell us was that he was extremely bright but not functioning at level at all. He said his functioning was around the 4th grade. He told me that this was not a parenting or a "lazy" issue on Brendan's part at all but rather a physiological issue - likely in part due to the heavy metal toxicity in his tissues.

The other things Dr. Lawlis wanted us to incorporate: get a big dog for Brendan to run and play with (Dad was all over this as he has been wanting to get a big dog anyway), get him in music lessons as soon as possible, get him in some sort of sports - we are a bit limited in this one because of the eye situation they mentioned yesterday, everything involving a ball would be out of the question because of his convergence issues (can you imagine having someone throw or pitch a ball at you and you see two coming?)- he suggested track.

We talked about a few more details. They will know more and give us a more detailed report when they are all back from the labs etc.

Dr. Lawlis ended our talk with looking me in the eyes and asking me how I felt. He said “Do you feel like you got what you came here for?” My response to him was “I came here for hope and I’m leaving with hope.”

I sat him down a bit ago to talk with him about going to stay with Grammy and Papa for a while. At first he was very devastated. His eyes filled with tears and he said "You mean I'm being sent away?". I was barely holding it together as it was so this was really hard for me. I told him that we were NOT sending him away and if he didn't want to go, he could come home with me tomorrow. Then I went on to explain that the doctors felt that he would do much better getting a fresh start somewhere where the kids didn't know him or his history. I also told him that the doctors felt that something in Houston was making him sick and we didn't know for sure what but we needed to try to get him better and the doctors thought the fastest way to do what was to get him out in the country where he could play outside and get fresh air. Grammy and Papa came in and Papa told him that he needed him to help him choose a big ole dog and help him train it. I explained that he would be enrolled in the school where Papa drives the school bus and that he would go and come with Papa every day. Papa was going to be talking to the principal and the teachers about his dysgraphia and the doctors had told us that they wanted to talk to the school personnel as well to make sure that Brendan was not too loaded down with work until he had had a chance to get better and re-learn the things that were behind a bit. As we talked, Brendan got more excited at the prospect of going to Arkansas. We finally told him that it was HIS choice and we would do our best to make everything work for him whatever he chose. He said he wanted to give Arkansas a try but we "better be on Skype at least three times a week"!

This is hard. Maybe the hardest thing I have ever done! I am so very torn and have such mixed feelings. I am exhausted from the battle to help him keep his head above water and feel guilty for feeling somewhat relieved that I don't have to be constantly vigilant about academics and school meetings. I feel like my heart is being torn in two - I so badly want him to realize his potential but am hurting so fiercely because I know I can't provide that for him. How is this fair? How is it right? The doctors kept stressing that this was NOT our fault - but it somehow still feels like it is! My mind keeps spinning in circles - what could I have done to cause this? What could I do to prevent it? What can I do to make sure our other three are safe? Will Brendan look back on this and think I abandoned him? I don't know. We can only do the best that we can with what we have to work with and for right now I feel like these doctors know what they are talking about and they are saying that Brendan is in a very fragile and dangerous place. If this is the fastest and best way to get him out of it, I will have to be okay with it.

I better get to bed. Mental, spiritual and physical exhaustion is taking its toll…

Life has been very difficult since I came home alone Friday. We have talked to Brendan via phone and tele-conference every day. It still is so hard. We feel like a huge hole has been ripped in our family – hard to explain but it certainly feels as though more than only member is missing! Brendan is such a fun addition to our family dynamic and I honestly have no idea how we are going to manage the future. Right now it just seems to stretch before us endlessly…I know it will get easier but for now it just plain HURTS!

Brendan seems to be doing well. Papa and Grammy are taking excellent care of our boy. He has been running up and down the hills and even made a bow and arrow in Papa’s woodshop with Cousin Brittan. They have plans to go find a big ole dog next week to help Brendan explore. Mom and Dad have talked with the principal at the school there in Alma. Since Dad drives a school bus, he will ride Dad’s bus to and from school and Dad can kind of watch over him at school. The principal is already working hard to make an easy transition for our son and it sounds very hopeful.

I know God can take what seems like a really tumultuous and difficult time and make incredible things happen…I am trusting Him for that very thing!

1 comment:

Dori Overman said...

Prayer...and Grammy and Papa...can fix ANYTHING! We are so blessed to have the parents we have...AND Bren is SO blessed to have the the parents HE has. I love you all!