Questioning Everything!

October 12, 2012 was the day I was waiting for for 39 weeks. The birth was uneventful and was over fairly quickly without complications. My son came into this world screaming and perfect. He looked like a grumpy old man that fell face first into a carpeted floor because of how fast I pushed him out. I was instantly in love with this tiny human.

Fast forward 2 1/2 years and my son is a happy, healthy toddler who never seems to stop. This is my first son, my previous child being a girl. My experience with boys was day by day, from what I obtained from online forums or personal references. Something was different about my boy, something was off. Not in a “bad” way, but not what I perceive as normal. My gut gave me all the warnings I needed to start researching. I started notations with his pediatrician, who listened patiently and showed the utmost empathy for me:

My son doesn’t stop. He moves fast and bumps into stationary objects that have been there forever. He moves without “seeing”, almost manic like. His arms and legs just going without meaning or purpose. He doesn’t like to cuddle or be held tightly in an embrace and he doesn’t like loud noises. The bruises from falling and bumping into things cover his body and its unnerving. I watch my tiny boy go about his day in a blur of commotion and off behaviors. He is constantly moving while watching tv and is obsessed with his tablet he got as an early birthday present. Tantrums are now part of our daily life and keep me walking on eggshells wondering when the next one will present and how long it will last.

I fill up the page writing and listing all my concerns on the form the doctor gives you at the beginning of the appointment. Do you have any concerns? Yes, yes I do. I fill out the front and back. Can I have another paper please? Here’s what I see in my baby boy and how can I help him? This cannot be normal, young boy behavior.

Well, I was correct. Parents have this innate sense that something is off with their child. They just know. I tried to listen to the people who tried to reassure me that he’s a boy being a boy. I wanted to believe. I tried to convince myself that he’s just a boy being a boy. He’s happy and healthy and so very smart! There’s nothing wrong with your son! My mom instinct told me different.

Fast forward 1 1/2 years, age 4 and I finally have the referral to see a child psychiatrist. Boston Children’s came highly recommended and the wait was over 8 months for my son to be evaluated. Every day activities were a challenge. He would be ok one minute and frustrated the next. He’d look for something and it would be right in front of him and he would still not find it without me helping. Normal discipline of time outs did not work and neither did a spanking. During that time, the tantrums became more frequent and longer. Leaving us both exhausted and drained mentally and physically. My tiny boy would be red, sweating and in pain from a migraine that I had to treat with pain medication. I carried the lump in my throat and pain in my chest until after everyone was in bed and I would ugly cry myself to sleep. We were all suffering. We were all clueless as to what was going on.

I anxiously awaited the date and kept myself busy. I’d check my calendar often and I called the office a few times to confirm the appointment was still there. Yes I was paranoid about losing my spot to get some answers. Yes I lost sleep wondering how things were going to progress. I would randomly wake up with a question I had to write down before I could go back to sleep, if I fell back to sleep. I was exhausted and my own depression was taking its toll. Am I failing my child?

I researched different diets and things to add or remove to help a child like my son. Sugar and dyes were removed along with vitamins and minerals added. I limited juices and milk, absolutely no soda and other super processed foods were removed. For the first 2 years of his life he had home made organic food I personally made for him. After a job change I wasn’t able to maintain that level of food prep so things changed a little but not much. We still ate as organic as financially possible.

I don’t remember getting ready for the appointment and I do not remember driving to the office. I do remember forgetting my notebook of questions I incessantly wrote over many sleepless nights. Figured that would happen, just my luck. I remember sweating and wondering if my outfit was presentable and what my first impression was going to be. I didn’t want to be “that mom” and try to push for a diagnosis my child doesn’t qualify for or deserve. I didn’t want to be that pushover either, as I knew my child was different from other children his age. I walked into the office and I filled out the paperwork and I felt impatient and frustrated at this mundane necessary task. I just wanted to see the doctor and get the answers I needed. After what felt like hours we finally saw the doctor that would not only give my son his official diagnosis but she would help me understand that I am not crazy or a bad mother. I’m a mother of a child with severe combined type ADHD, severe anxiety, Sensory Processing Disorder (SPD) and Oppositional Defiance Disorder (ODD). My son had a behavioral disability. A neurological disorder.

I felt relief and I felt guilt. I felt relief with having a diagnosis, now we can figure out a treatment plan. The guilt I felt overwhelmed all my senses and I remember being afraid to stand because I thought I was going to pass out. My son happily playing with the toys the doctor gave him. My voice was funny from holding back tears and my son looked at me a few times because he can hear the emotion in my voice. The doctor listened, wrote down specifics and asked questions. My fears flooded in and I flashed forward 20 years and pictured my son self medicating because his ADHD made his life a living hell. Because isn’t every ADHD male a self medicating mess? The doctor gently laughed at me and told me to stop Googling because it’s going to cause me more anxiety. I laughed at that and felt embarrassed and self conscious. I told her my son's biological father is also ADHD and he self medicates with alcohol. I answered her questions about my son’s father. No he is not involved and no he’s not interested in being in this little boys life and Yes I feel unbelievable guilt about that too. We discussed medication and my fears. Everything I thought I knew about ADHD medication was incorrect and I had to move passed my ignorance and learn everything the correct way. I received the paperwork educating me on the Adderall my son was prescribed and she explained what she wanted me to look out for in regards to reactions negative and positive. I remember taking deep breaths and the feeling of guilt because I was medicating my tiny hyper boy. Will this affect his growth? His appetite? Sleep? What about his kidneys and liver? My questions came out in one run on sentence and the doctor did her best to answer. Then it was over.

I don’t remember walking out of the office or driving to the pharmacy. I do remember asking to speak with a Pharmacist and to be honest I cannot remember what was said. I just remember how uncomfortable I felt and how paranoid I was thinking this woman is judging me for medicating this tiny boy bouncing around behind me. I remember having to stop my questioning multiple times to keep my son from climbing the shelves and touching everything. I remember the frustration of the combination of embarrassment, impatience and guilt. I filled the script and we went home. I didn’t sleep well that night. I had nightmares and I remember thinking I need to wait until my next day off before I start the medication so I can keep a hawk eye on him for any negative side effects. So I did and he took his first pill like a champ. Just swallowed the small pill whole. All I kept thinking was I hope this doesn’t set the foundation for future drug abuse/addiction.

I notated everything from time awake, time he ate, what he ate and time medication taken. I notated his behavior before the medication and assessed his behavior every 30 minutes afterwards. I did notice a remarkable difference! I was amazed and scared. He wasn’t a zombie! Hooray! But what am I doing to his tiny body in the meantime?

Fast forward a week later, my son started becoming irritable and angry. The medication was finally showing negative affects on my son. I wanted to give it a few more days, but one early evening in particular, my son turned into what I could only compare to as a tiny Hulk. He was in a rage over being spoken to about not listening and he lost tv privileges for the night. He stomped upstairs as hard as he could while screaming and he slammed his door and started banging on the door as hard as he could. It sounded like a grown man behind that door, not my tiny 4 year old child. I admit, I did not handle this situation well and I still think about how I could have handled things differently. I yelled and he got a spanking. I put him to bed and he cried how much his head hurt and all I could do was reply out of frustration and anger was if he didn’t act so bad, screaming and crying, that his head wouldn’t hurt. I told him if he stopped crying, his headache would slowly go away. After awhile of more yelling, him crying, I gave him pain medication and he fell asleep. He woke up a couple hours later starving. I gave him what he asked for and he inhaled his food, his face all puffy from his rage tantrum. I hugged him and had him lay in bed with me for a little bit, trying to softly talk to him about the whole nightmare that transpired a short while ago. That started a whole new crying fit of frustration because he couldn’t explain how he felt or why he felt that way. I was so broken and I felt terrible for him, especially because he did get a spank during a time when he needed me the most. I put my helpless boy to bed and made sure I showered him with kisses and hugs and lots of loving empathetic words. I apologized for the spank. That night as I cried, I made a silent promise to my son that I will do whatever I can to educate myself to help him. Google became my best friend and this was the last day on this medication.

His second medication was a blood pressure medication used for ADHD. All it did was make my child nap at weird hours during the day. The doctor called me specifically and kept tabs on my son during each new medication change. It was a welcome support and made me feel better. Another office visit was needed for a third medication. This time I was pleasantly surprised to see a positive difference in my son!! The third medication worked and it was extended release so we had a few extra hours of calm little boy. The only negative affect was it made my son very sensitive and he cried over everything and anything that wasn’t going his way and a slight facial tic of squinting his eyes. This was short lived as his body adjusted to this new medication. Over time I noticed that he was acting age appropriate and able to control his impulsive behaviors better. They didn’t go away, but he was able to stop and actually “see” things around him and he started do more things he enjoyed but couldn’t focus long enough to even start. His ODD was better during the active period on the medication too, which is a welcome relief of defiance. I bought him focus toys and puzzles. He showed an interest in Legos, so I bought him a big kit. I didn’t realize how expensive this would be. I wasn’t expecting any of this rollercoaster called ADHD.

The next doctors follow up appointment gave me a better view of what this journey entails. My son needed a therapist for various reasons and I received a list the doctor recommended personally. I also received a referral for Occupational Therapy. So twice a week, on my days off, I brought my son to “the fun doctor” or occupational therapy and the next day he went to play therapy. He loves these times, where he gets one on one time with fun people. He gets to play games and crash in the sensory room. His SPD causes him to need to crash, slam and bang around to feel better and safe. He needs to jump and fall. He literally crashes around and that outlet makes him better able to control other aspects of himself. It’s how his brain processes better by causing a dopamine rush. ADHD brains lack dopamine and they seek ways to create a dopamine rush. It doesn’t matter how they obtain it, positive or negative. After several long months of multiple appointments a week, he was discharged from occupational therapy, graduating by meeting all the milestones. I was excited for him! Then reality kicked in and I realized my son won’t have that crash release once a week. Once a week was better then none at all.

Throughout this whole process of diagnosis and treatment, I had to change a lot of who I am as a mother and a human being. I had to revamp the way I parent and I had to educate myself on how to treat a child with an invisible disability. I created a binder of every single assessment and medication and therapy notes. I have notes from my son’s teachers over the last 2 years. I had my son tested with the school department so I can set up the proper accommodations for him if and when he needs it. He loves school right now, but he’s only in kindergarten. That may change over time. I joined so many ADHD sites and forums I honestly lost track of them. I receive emails and became friends with parents all over the world going through this crazy journey right along with me. I found out that I truly am not struggling alone. I know other parents are just as frustrated as I am. They are just as proud as I am when hurdles are overcome. We celebrate and share both the good and bad with each other and we build each other up, not tearing down with negativity and judgemental comments. I have books I have read. I have highlighted and underlined so many different things I found beneficial to my situation here with my son and I have used some ideas and thrown others out because they didn’t work. I have pages I have printed and I have articles saved to my email. I have books in my Amazon cart waiting for me to read. I’m just a busy mom working full time with 3 young children.

My journey began a few short years ago, and this will continue until my son takes his last breaths. This disorder is managed with therapy, medication and hard work. My son will always have hurdles neuro-typical people do not. One thing I do know, my son will be successful and I will always be his advocate. I will fight to get him to where he needs to be as a successful, contributing adult that doesn’t use his disability as a crutch, but as a weapon for success. He will not play the victim and he will be taught proper ways to manage his condition and how to use his medication responsibly. Life will not be easy, but he will succeed. His momma did and I will always be ok no matter what is thrown my way.