My Max

Well, a lot has happened in our lives since the fall or since I last posted anything. It's not terrible, life just looks different. There has been a fork in the road and it involves my precious son Max, age ten soon to be eleven on June 12. I decided I'd write an overview about his life this year instead of repeating our story, forgetting who I e told what, and feeling very overwhelmed by life's details. For those of you that may not have known me in the beginning years of my marriage I will start there because it was not soon thereafter that we became pregnant with Max. Yes, six months into marriage and we found out we would be expecting our bambino on August 28th, 2001. I was 28 and Jason and I knew we wanted a family and had read about a study that came out that said if you have your first child before the age of 30 you decrease your risk of breast cancer by 50%…my mother had had a bilateral mastectomy the year before I married Jason so it just made sense to us to not wait too long and my clock was ticking. I will also add that my maternal grandmother had breast cancer late in life and my dad's sister died from breast cancer in the early 90s and had battled it I think for over ten years. Mom also had a first cousin who had breast cancer in her 20's that took her life as well. Needless to say anything that decreases your chances by 50% is worth a try, it's up there with exercise and diet for me. The Lord blessed us greatly and quickly. Fast forward, Jason and I had celebrated our one year anniversary big and pregnant at the beach. We came home on Sunday and I came home very sick with a virus of some sort and stayed home from work that Monday, June 12. I started having abdominal pains around mid day and just thought it was ligaments stretching. Mind you I was only 29 weeks gestation. By the end of the day I finally called the Dr. in intense pain and we went to the hospital. The Dr. checked me, looked at me and said "well you are going to have a baby tonight!". I was in shock and 8cm along. There was no stopping the baby from coming. Up to this point we didn't know if we were having a boy or a girl. Max came. Around 10 that night weighing at 3 lb. 14 oz and 29 weeks gestation. He was a big baby for being a 29 weeker. His lungs were not developed and it took two attempts with surfactant to get his lungs just to expand. At that time only two times could they try and the second dose worked. I believe this had only been used since 1990 for immature lungs and babies before that more than likely would have died. It's the sticky stuff inside the lungs that helps them expand is my understanding. He then was put on a ventilator and whisked away in a critical care ambulance to uptown Charlotte to the NICU at Presbyterian. I was in the small Presby. Matthews hospital and there was not a high level NICU there at the time. I saw my new, very sick son for about 30 seconds inside an isolette covered from head to toe with wires and tubes, I didn't even know what he looked like and couldn't hold him. Up to this point in life that had probably been the most difficult heartache I had experienced. God was good and Max was only on the vent for about 24 hours. I met him the next afternoon and still was unable to hold him because every movement for a preemie counts as a calorie burned and they need to develop and are in high critical care those first 72 hours. Our life was a roller coaster for 49 days of Max living in the hospital. We brought him home at the end of July. Outside of some urological issues he developed at a healthy pace and hit all of his milestones as he should have, always a couple months behind a healthy baby who would have been born full term. Max was a delightful toddler. Of course I am his mother but he was a sweetheart. He talked, played and ate well. At age four he picked up reading on his own. He was an older four but one day it just clicked while we were reading books and then there was no stopping him. His preschool teacher for t-k said she would always have Max help fix her computer games if they got stuck. He loved music and would try to lead the class when we did music classes for toddlers. He also lead the Greek National anthem in kindergarten once they learned the words. He was a very happy spirited child. Max has always loved school, has made very good grades and overall has had good behavior. He's a typical first born, eager to please. First grade, 2nd and 3rd he exclaimed how he loved school! Then 4th grade started in the fall and things changed. Max has always had issues with sprizting the front of his pants. He had something called post urethral valves found at birth which was surgically corrected by 6 months of age. But because his bladder wall is somewhat thicker than most his body doesn't signal to his brain that he needs to pee right away. As children do, Max would wait so he could play and just avoid using the bathroom. We gave him a watch to wear that vibrates every two hours to remind him and that still didn't lead to consistent changes. We kept telling him that if he kept this up that kids would start noticing and teasing him come 3rd and 4th grade. The peer pressure didn't change his lack of willingness either. And what we predicted happened, kids started picking up on it. Max is also a kidney stone former and needs to drink a lot of water and pee throughout the day so this compounds the problem. The child knows what extreme pain is...he has had them since he was two. So we have a child in a ten year old body, already having body odor and growing armpit hair and he spritzes the front of his pants, sometimes. Any parent can see where this could lead. He did get a little better at holding it all day but it wasn't perfected. Also being a bright child, Max is very enthusiastic to participate in class and willing to answer many questions. Although book smart, we've always recognized that he was socially immature for his age and just chalked it up to being a preemie. Well he still hadn't seemed to grow out of it. In the fall he let us know how he was being left out of games he was trying to participate I on the playground. Some kid would run away from him and say he pees his pants to his other friends. Max has never been very coordinated and has had issues with athleticism. He does play basketball but with much frustration and whining. So kids wouldn't want him on their team because he couldn't help them win etc. He would experience the same thing on the neighborhood swim team in the summer. I hated when they put him on a relay because he was by far the slowest swimmer and not very competitive, this didn't go over well with those kids either. One classmate told him he wasn't cool because he didn't do certain things. Of course Max's heart was broken and he was experiencing rejection left and right. And all he wanted was to be accepted and he didn't understand why and thought it was because of his medical issues (spritzing pants and kidney stones). But I knew why the other children were seeing him as an underdog. He had a breakdown in October and finally told us what was going on...tears and a pain in his heart I'd never seen. It was awful as a mother to hear him wail in the shower and wonder why kids didn't like him. It makes my heart hurt as I write. I met with the teacher and assistant principal and they dealt with it at their end but it really never got better. You see it was under the radar bullying. It was in line during transition time,on the playground, conversations during lunch or just the dirty stares. I witnessed it first hand for the first time in February. The fourth grade class took their annual train ride to the state Capitol in Raleigh. It was probably the second hardest day in my life as I witnessed first hand how truly different my Max was compared to his peers. I saw how he tried to converse with others and wouldn't be included. How kids just kind of looked at him and their face said it all, "you are so weird,". Others were like come here so and so come sit with me, but not my son. He painfully tried to join conversations to fit in but was ignored. We were standing in line and Max tried to talk to a peer and he wasn't making sense and the kid said, just leave me alone! I, his mother, was standing right there! It took all of me to not be a bear. Once inside the building Max eagerly over the top answered or wanted to answer any question the tour guide asked. While his peers had the social cues to play it cool, he didn't. I had on these big sunglasses and was holding back the tears as my heart was shredding on the inside. One kid mimicked Max at one point at something he said and I couldn't hold it back and I said are you being unkind? And he was like no...he asked such and such. I was about to throttle a neck. I just wanted to rescue my baby and run away. Max also started having an eye tic and was blinking a lot throughout the day. He had started that a couple weeks before that but it was particularly worse that day. It was very painful for me to see him do this, something wasn't right. He was stressed! He was having headaches and stomach aches all year...stress induced! He always seemed to have them during Greek class at the end of his long school day. The stomach aches were starting to interfere with his school work during school. Also, on the train ride home some sweet Moms filled me in on what their boys had told them about Max. They said that kids teased him and called him stupid, laughed at him. They were one of the few kids out of twenty in his class that noticed his being u accepted. I had no idea it was this bad! THIS was my turning point, my revelation about Max. Pieces of a puzzle were coming together. My heart was aching, I would do anything to take away his pain, his rejection his unawareness. The next day was a Fridy at school and the class had a valentines party. I went by his class to pick him up and Max had a terrible stomach ache. He had been doubled over sticking his head out the window sill for the last ten minutes of the party. I went over to get him and he said in a weak voice , I need real air, I need to climb out this window,I don't need artificial air. I need to go out this window, no artificial air. I was panic struck, I was thinking my child is having an emotional melt down. I finally got him to agree to go out the door and out to the car. He was having major sensory overload! I had been reading way too much on the Internet and found words, socially awkward (check), reads at a young age (check), doesn't read body language well (check), high anxiety (check), loves Legos star wars video games (check), tics (check), not very coordinated and very disorganized (check and check)! I didnt need a diagnosis, a mother knows her child like no one else. The more I read the more my world spun. These characteristics all lead to a child with aspergers. The heartache, the reality I was being confronted with, the possible truth was hard to swallow. This wasn't something that was going to disappear over a weekend or a month. This was his blueprint. This is his blueprint. After a letter going out to the class about bullying and mostly toward Max, many parents were so supportive and felt terrible that Max was going through this. Even one of the ring leader's mom called me and brought her son over and we spoke with him and he and Max made up, Max forgave him (he is so tender that way), and they played video games. That mom hated that her child was doing the bullying and that mine was on the receiving end. It was a great lesson on forgiveness and I commend that Mom friend of mine for stepping up and reaching out. It meant so much to us. Unfortunately the bullying didn't stop there With other kids and last week Max's class had a sub and they took advantage of that. Max was brought to tears and to,d by one child that it was Max's fault that they got in trouble. Max told me and said he didn't want to return to school, this is the third time he has expressed this. We were trying to get him Through the end of the year but this was the last straw. How does a a rejected child enter a classroom everyday and wonder if he will be excluded, taunted or teased. He was at his max and I don't blame him. T this point they have finished most of their required studies so we pulled him out for the last two months and are keeping him busy doing workbooks, reading, chores exercise and Brain Balance! What's Brain Balance? It's a program Max started Monday here in Pineville. It is three days a week for one hour. It also involves daily home assignments. We have eye exercises, sit ups, pushups, back exercises, and some weird music therapy cd to listen too. Soon we will get blood work for food sensitivities and see if we need to eliminate certain foods. It's a non mainstream approach to dealing with these neurological issues in children. In Max's case he right brain isn't as developed as his left brain. This explains his anxiety, his emotions, his difficulty with expressing his reading into words on paper. We will do this for 36 sessions. A great word picture to describe this is if you have a lazy eye, which one do they patch? The strong eye so the lazy eye can exercise and catch up and be balanced with the strong eye. Well the brain is the same way, Max's right hemisphere is weak and needs to be exercised. He does this through a series of academic, physical exercises, eye exercises etc. to strengthen the right side. May it sound quacky to some, yes. It's not the one size fits all medical approach. After his assessment at brain balance over spring break we learned more about how Max is wired. His core muscle strength is that of a 4-5 year old, some of his academic abilities are that of a high schooler and college age kid, and his emotions are of a 7 year old, yet he is in a 103 pound almost eleven year old body and starting puberty on the early side. His body/brain is unbalanced. So through much dedication and work to be done we pray that Max will come out of this with a more balanced body to be the best Max can be. Some people are like it's very expensive, to which I say yes and insurance doesn't cover this. But is my child worth it yes! Are there a gazillion different opinions and advice on how we treat children on the autism spectrum, yes! Do families try many different options yes! Why, because we will do whatever it takes to give our child the healthiest life we can give them to feel like confident accepted adults someday. So, I am hopeful and know that Max has so much to offer and will make an awesome adult someday. We just have to direct his sail through these next 8 years or so to help him achieve that. As far as school goes, we are hopeful that he can go to a small private Christian school next fall. We are visiting it week after next. It seems it would be a good fit for him and we know some of the teachers and have a few friends hwhose kids go to school there. We love Socrates Academy where the kids have been going and Charlie and Evy will continue to go there. The principal has been very supportive and Max's teacher did all she could on her front. Adults love Max and I know his teachers are sad to see him go, as am I but we know it's best for him. This wasn't my plan for my son. This wasn't the way I pictured Max's life at ten. I know there are bumps in the road and tears and trials and celebrations but this has been a tsunami for me and Jason. Max is unaware of a diagnosis name for what he is struggling with and it's not important. He knows he is getting his brain balanced and he seems not so stressed this week hanging out with me and doing brain balance. Now it's only day three of homeschooling for two months but we can do anything for two months, especially for my child. We are learning how to parent him in a different way. Our other approaches didn't work and now we understand why we were hitting a wall all of the time. I know if it's loud Max may cover his ears or ask to step outside for some fresh air. I know he didn't use the bathroom much at school because the toilets were loud and it was kind of s arty to him. I know when he is blinking his eyes even if he tells me he is fine he really is stressed about something or anxious. Through allof this we all as a family are being refined. This isn't just a Max thing it involves all of us. Max has turned to scripture to comfort him during his times of fear, he knows that sometimes God's p,an is different than ours, and he knows that his family loves him and supports him on his journey. I hope this lengthy summary, ironic I know, helps explain our lives and current state of affairs. Forgive me if I'm tired, not smiley, unresponsive it's just been hard and I don't hide my emotions well. I know this is our plan laid out before us and my heavenly father will carry all of us every step of the way. As I tell all of my children, "Max God made you in his image, and his image of you is perfect the way He saw fit.".