I have one of those children that carry a label. Special isn’t usually how he is described. Words like defiant, loud, disrespectful, disobedient, rude, liar, behavior problem, unruly, inattentive, rebellious, too active, annoying are more common for us to hear when others describe our child. Some compassionate professionals will refer to him as challenging, strong willed or a ‘high flyer.’
I want to tell you about my son. He is amazing! He is our third child, the third son. (For the record, all of our sons are incredible – but this is for Max). His birth was so anticipated! We had tried to conceive after our second child was just over a year old so that all of our children would be about two years apart. It wasn’t that easy. I couldn’t seem to get pregnant. Then, when I did get pregnant, I miscarried. Twice. I prayed for all of our children. But I did pray more for Max. Max was born almost 5 years after our second child.
Max was the sweetest baby, surrounded by so much love. Not only did he have Mom and Dad, but two older brothers who loved him. He never cried or even used a pacifier. There were always people around him and he was easily entertained. At six weeks old he came down with spinal meningitis. We were in Florida on vacation. Our baby, who never cried, wouldn’t stop crying. He was running a fever. It wouldn’t go down. We went to emergency.
I was terrified. Finally, I was able to get a hold of our doctor in Michigan, he persuaded me to let the ER staff run tests, insert an IV, take blood and perform a spinal tap. Now, remember, this is the baby that never cried. The baby I prayed for, for so long. Our Michigan doctor told me to have my husband hold Max and for me to walk outside the hospital until the tests were done. I was hysterical. My two older boys were with my parents. The spinal tap came back positive for spinal meningitis. I rode to Orlando General Hospital in an ambulance with Max. It would be a 72 hour wait to determine if it was viral or bacterial. While Max and I lived in the hospital, Jeff stayed with our two other sons. My parents had left. We were all alone, in Florida, with a very sick baby. Finally the tests we were waiting for came back as viral. The antibiotics stopped. Max recovered. My heart will always remember the fear and the sheer helplessness I experienced. I still live in the joy of Max’s recovery.
Max was an incredibly beautiful little boy. He had soft wavy hair of angel white blonde, the clearest twinkling blue eyes and dimples that would melt your heart. I am pretty sure that God knew Max would need to be so impossibly beautiful because he was going to be a constant challenge to parent. Max had so much joy, curiosity and get up and go! He was completely self mobile by nine months old. I found him on top his brother’s bunk bed. Of course I scolded my husband immensely for leaving a baby on top a bunk bed. Jeff didn’t have a clue what I was talking about! The next week I found Max on top of the refrigerator. He had opened a pantry door with narrow shelves and apparently used it as a ladder. I don’t think I ever sat down or left him unattended until he started school. I celebrated Max’s energy, innovation and joy of living. We all did. Maybe, his brothers not so much, as he was always into their stuff!
I knew Max had a lot of energy. I guess I didn’t realize just how much until preschool. Max couldn’t sit still at all. Or stand in line. Or follow directions. Or play with the other children. Or color in the lines. Or begin to read or write. I think his poor teacher suffered through us in preschool because she had such a big heart – thank you Mrs. Lull.
Kindergarten was the beginning of a huge change in Max. My sunny, loving, happy, joyful child disappeared. He became sullen, angry, anxious, and so very negative. His kindergarten teacher thought we should have a daily behavior communicator which she safety pinned to Max’s shirt. It either had a happy or a sad face on it. This went on for about a week before he came home one day with just the safety pin. I asked Max about this. He replied, “Oh, my teacher ran out of the papers with the faces on it, but she wanted you to know what a good job I did. She sent just the safety pin so I wouldn’t forget to tell you.” We quit what we liked to call the ‘scarlet safety pin.’
Max’s educational experiences could fill a text book and my tears could fill a river. At age six we were referred to Dr. Sloan, a child behavior pediatrician. He diagnosed Max with very high scores in all areas of ADHD. We were also referred to a psychiatrist for neurological testing. Max again tested positive for ADHD and anxiety disorder. What this doctor also found was that Max had an extremely low processing speed – only 2%. At this young age it was determined that he had numerous learning disabilities. The neurological testing came back with anomalies that were most likely the result of brain damage from the spinal meningitis. So what could we do?
The medical professionals tried drugs for ADHD. Max could not handle a stimulant drug, or some of the other popular ADHD meds of the time (Concerta, Ritalin, Focalin, Straterra). We were told that Max was too young for an IEP (Individual Education Plan), the school we were in didn’t like to do them until 2nd grade. We later found out we had been given faulty information. After repeated urging we went to an occupational therapist where she explained that Max had many sensory integration issues (why he wouldn’t wear certain clothes, touch certain textures, timing issues for rhythm that would translate into poor coordination for catching a ball and some other sports, cadence for hearing and reading, why he liked to wear work shop ear muffs around the house, why crowds escalated him). The OT gave us extremely useful input for Max. Things like: five minutes of large muscle exertion would allow him to sit and concentrate for about 20 minutes, short – one word directions were more effective than a sentence, chewing gum and using a straw would help him concentrate, a weighted blanket would help him sleep, a bouncing chair and doodling could help keep his mind engaged. I mean, “hello?” No one teaches parents or teachers this stuff! I was three years into the education system and this was a huge light bulb moment. I was getting some helpful tools for Max.
During this time we were so overwhelmed as parents. Our marriage had been rocky. I had suffered clinical depression. Every time we tried a new med on Max our family would fall apart. I was reading every book on ADHD, parenting and sensory integration that I could find. We went to family counseling. Having a Max wasn’t easy for our family, it wasn’t easy for his older brothers. The support groups and forums seemed to have more complaints than solutions.
We turned to church. Individually and as a family finding a personal relationship with Jesus Christ was the answer we had been looking for. Without faith, without Jesus, I don’t know if I could have gone forward. What we didn’t find was any help with Max from the church as a building. If we took him to Sunday school he would usually be out in the hallway after adult service or we would hear the same complaints we heard about him from every where else. He didn’t fit in there either. A dear friend of mine was in charge of a group of children at Vacation Bible School. Max was in her group. She called me in tears, because she felt she was failing with Max – she couldn’t get through to him or control him in a group. I hate to say this, but I felt validated. Her compassion for Max allowed me to admit how difficult it could be to parent him. We were even asked to leave a church because they were not set up for children like Max. We have made some very good Christian friends who have always accepted and loved Max for who he is. They and a few others are the exceptions in Max’s life and for them I will be forever thankful.
Max was permanently suspended from bus privileges as a first grader. I didn’t know that was even possible! In second grade things exploded in his school. We had a person of prominence ignore his IEP. My husband hired an attorney. I felt our parenting skills were being questioned. Many people throughout Max’s life have given us advice such as:
- Have you tried timeout?
- Have you considered taking away some of his privileges?
- Have you ever grounded him?
- You should spank him more!
- Do you let him suffer consequences?
You know, I want to just stand up and say, “What a good Idea! I can’t believe I didn’t think of that!”
I have two other children that don’t have the issues that Max does, we are good parents! We don’t allow or accommodate disobedience, rudeness, lying. Only the parenting that worked for our other two children needed to be tweeked (a lot) for Max. In fact there are areas we are probably on the 1057th teaching repetition for Max and he still has not got it. I’m sure he will get it, it just might take 2054 times, or more.
Since second grade Max has been home schooled, tutored, in and out of the public education system. Right now he is in the public schools and this year he has a pretty darn good support staff around him. He has finally been able to tolerate some of the newer ADHD drugs (Intuniv and Vyvannse). Still he has had about 40 detentions (yes, this school year), 1 expulsion, switched classes, been exposed to language and situations that I am blown away by, has been accused of bullying, has suffered migraine headaches and can become so frustrated he cries. I am in constant contact with his teachers and the school. I know it is not easy to have Max in a classroom.
In our family, with my husband and I, or with a small group of people Max is great! He is just a pretty normal, very fun and funny, big hearted kid turning into a young man. Max is gifted with the ability to drive and maneuver vehicles, heavy equipment, power tools, basically anything with a motor. He is very smart, capable and out-doorsy. He is a hunter. He loves dogs and horses and small children. He loves the Lord! He will often ask me if he can pray for me. He prays for so many people and situations. Max is creative, he has an artist’s eye and is good with a camera or any number of art supplies. He plays the harmonica. He has a servant’s heart and loves having a job to do. We love this kid!
We were recently on a mission trip to the Dominican Republic. One night we were able to meet with a group of Haitian refugees to pray with them and bring supplies. The Haitians are not welcome in the Dominican Republic, much like illegal immigrants are not wanted in the United States. Afterward our group was meeting together to process our time spent with the Haitian people. Max shared. “I know how they feel,” he said. “I have been a reject in the schools I have been in. I really felt for them (the Haitian people) because it hurts to be left out and not wanted.” My heart broke, again.
Max is the kid that is picked last for the team sports. He is the kid sitting in the hallway, principal’s office, alone at lunch, or in the detention room. Max is the annoying kid in your class. Max is the kid that cannot calm down when everyone else does. He is the kid that others can and do rile up, because it’s easy and entertaining for them. Max is the kid that says what he thinks, immediately and loudly, without thinking about the consequences. Max knows if you don’t like him. In his attempt to get you to like him he probably bugs you more. Max is the kid that isn’t invited over to play, or to the birthday party, or fun group event. He notices this, he just isn’t capable of being any different than he is. He desperately wants to fit in. He lies, acts funny or outrageous and exaggerates in hope of getting your attention. Max wants you to like him. Max wants to be your friend. Max wants to be loved and accepted. He is maturing, growing and learning each year. He is a square peg that will never fit into a round hole.
Max and kids like Max have so much to offer. They are smart, funny, loving and desperately seeking approval. We have the privilege of knowing more of these kids than the average household because one of them lives here. They tend to be drawn to each other. Our peg holes are in every shape we can imagine!
Love these kids!