ADHD Awareness Week

Many of you, like me, probably had no idea there was even a week that brought awareness to ADHD. I don’t think anyone can really appreciate this unless you really live the experiences of having a child with ADHD or being an adult with ADHD.

For those who have read my blog, you know the struggles Shane and I have had over the years. He has had so many ups and downs. I wanted to share his story one more time in support of ADHD awareness week and for those who don’t believe that ADHD is a true condition that can really cripple a child’s ability to function in society alongside his or her peers. Until you have lived it, you really cannot possibly understand. I know that there are many disabilities out there; so many that create hardships that are much more challenging than ours. But NO ONE has the right NOT to take this disability just as seriously as others. If not treated properly, children with ADHD struggle their entire lives. They have the potential to become alcoholics, drug addicts, high school drop outs, criminals, suicidal, or just live life by “getting by” without ever really reaching their full potential. Society tends to turn their back on them because no one understands how to socialize with them or find ways to help them succeed because it can be exhausting. The hardest thing about these last few years is seeing how many people choose, time and again, to turn their back on my son because they just don’t understand or how many people have turned their back on me because they think it is my fault for not being more disciplined with him.

When Shane was 18 months old, he began to show signs of his ADHD. I did not know it until recently, but children with ADHD will typically start to develop those “symptoms”, on average, at about 2 years of age. Shane began a bit earlier than that. His babysitter at the time did not know what to do about his multiple tantrums that were so violent, she would have to just stand back and let him go for fear he may cause her harm. His father and I had divorced when he was just barely a year old, so we thought that he was just having a hard time with that. But as time went on, he continued to struggle with tantrums, separation anxiety, serious behavioral problems at his daycares, and outright defiance to any form of authority. By the time he was 7 years old, he had been through 7 daycares. Every daycare claimed to be able to help him, and every single one quit on him when things became too difficult. I had one daycare that used to put him in a corner of the room by himself because they did not know “what to do with him”, there solution was to isolate him and ignore him during the course of the day. The director at his Private Kindergarten class and daycare told me that they just didn’t have the resources to meet his needs (the kindergarten class had ten children in it). He has thrown desks in classrooms, hit teachers, said inappropriate things, and his impulses are out of control. I developed positive programs with a few of these daycare programs, but their consistency usually fell apart after a few weeks and they would tell me they “can’t do the positive reinforcement any longer because it wasn’t fair to the other children”. Day after day, tear after tear, I looked at my boy, wondering where I had failed him as a mother. Wondering what I should have done differently in his early development to avoid all of these issues. I blamed myself for so many things and felt that “if only I had done XYZ different, maybe he wouldn’t be this way.” These first years of his life were the longest, hardest years I have ever experienced. I would get anxiety every time my phone rang, I felt helpless and out of control every day, and every time I would go to pick him up I would need to take a deep breath because I wouldn’t know what kind of report I would be getting.

Almost a year ago, a friend of mine who happens to be a behavioral specialist, suggested he may be ADHD. I said, “no way” because he had shown so many signs of reasons why he couldn’t be (turns out those signs, called “hyper-focus” is actually a symptom). She asked me if I had ever actually read about ADHD and what it actually is. I had to admit that I hadn’t. I was being ignorant and making a judgment call when I hadn’t even attempted to learn the facts. I went home that night and started researching. After a week of research, I had realized that I needed to start the process of having him evaluated.

The way society and the media talks, you would think that it is easy to get someone diagnosed with ADHD. I don’t think anyone really and truly appreciates how difficult it really is. Shane went through two different assessments, one with the school psychologist and one with a clinical psychologist. His teachers were so helpful with me through this, answering questions and giving information to the psychologists. The principal met with me on a few occasions to help me understand what I needed to do as a parent to get him in the correct programs. My son’s struggles continued to worsen. At one point my 7-yr-old sweet boy looked at me and told me he didn’t want to live anymore. When your baby says that to you, at such a young age, something snaps inside of you and I was determined to make these people listen to me and the needs of my baby boy. I was no longer only his mother, but I became his advocate as well. I was not about to let him suffer for one more day. After 5 months of evaluations and meetings, I finally got a diagnosis. I finally got someone to see what I saw and we made a decision to get him on ADHD medication. Deciding on medication truly is a big ‘ol science experiment. The psychiatrist told me that it could be ADHD or anxiety, the only way to know was to treat one or the other. So he asked me which one I thought we should treat. He told me the pros and cons of each side. After some thought and consideration of the risks, I decided to go with the ADHD medication. Instinctively, I felt that the anxiety was a result of the years of being punished and disciplined for constant behavior problems. Within weeks of this decision, I started to see a change. Months later as we started 2nd grade, it became clear that we went the right direction in treating the ADHD first. The psychiatrist felt that we had the right diagnosis and after some experimentation with the medication, it seems as though we have the right combination. Between changing his diet, increasing his Omega-3’s, the behavioral therapy, and the medication….I now get to sit back and watch my son enjoy life in every aspect.

Here are just a few comparisons from “Then” and “Now”:

THEN – 1st grade homework took on average, 1 hour to complete. Taking out the garbage from the kitchen to the outside trashcan would take 30 minutes if I didn’t follow him. When teachers would correct him on his schoolwork, he would throw a tantrum to the point the teacher had to remove him from the classroom. He would spend more time a football practice poking and messing with the kids around him, he would have to run all practice. I lost count of how many times his coach told him to “pay attention”. Children isolated him, teased him, bullied him because it was really fun for them to push his buttons and watch him explode. He was removed from general population recess because he was fighting every day. He was terrified to try new things or take risks because he was so tired of failing at everything.

NOW – He completes his homework on the 10-minute bus ride home. He not only takes out the trash, but he can vacuum the house, pick up after the dog, and make himself a snack in less than 30 minutes. He can even make himself scrambled eggs! He is now allowed to mentor and tutor the students in his class because he is so advanced in math. He is called a role model in class. Children want to play with him and be around him because he is encouraging and kind. He plays at recess with all of the children because he now can control his impulse and can think a little better about his consequences when he makes choices. He actually watches the football games on the sidelines. He has been allowed to learn new skills because he listens and is teachable. He has also helped his teammates by encouraging them to try. He is not afraid of risks. He tries new things and he doesn’t give up if it doesn’t work out.

One thing I have learned in all of this is that every child deserves to be given a chance, to have the adults around them give them everything they can to make their lives special and happy. Every child needs tolerance and patience from the adults in their lives, but children with ADHD need this more than anything. Shane has had a few people who have shown him love, acceptance, tolerance, and patience. A few that have never given up on him or turned their back on us. I thank them for this because it has made a difference for both of us.

My son never used to smile every day; the smile that tells a mother that he is happy, content, and feeling the joys of being a kid. I was terrified that I would never see this smile on my sons face. ADHD is a very challenging and difficult disability because it is difficult to diagnose and difficult for society to accept as a real disability. It is all too often just not taken seriously.

I now see that smile every day. We still have a very long road ahead of us, but I have hope that he will grow to his fullest potential and learn to live a life of love and fulfillment. He may struggle, but we now have the tools he needs to overcome his struggles. He has the support and the guidance that everyone needs to get through life.

As the week of ADHD Awareness comes to an end, I hope that folks will take this a little more seriously and learn more about what ADHD is as opposed to the myths and judgments that have been made about ADHD children and adults. I am hoping my son’s story will help others identify children like him and rather than dismiss the child as a “problem child”, maybe show that child a little more compassion, patience, and tolerance. Like my son, children and adults with ADHD need that acceptance and love. They deserve just as much as any other human being. They may not be the easiest people to live with, but they are some of the smartest, funniest, most lovable people you will ever meet… Just like my boy is.

I am unfriendly and hostile….

Part of being a working mom, is finding daycare. UGH. Of course no one will ever love your child the way you can. No one could possibly care of him the way you could. Try finding daycare for a child who has unseen special needs. Find one willing to work with a child who has a behavior disorder that many in society blame on “bad parenting”.

I once received a very ugly letter from a woman who claims to be an expert in childcare and early childhood education. My favorite quote from her letter was “You are unfriendly and hostile”. Of course there is quite some history that goes along to what led up to this point, but my strong will and passion as a mother was perceived as “unfriendly and hostile”. It would be nice if I could just be appreciated as a mother who wants to create a peaceful environment for her son. It would be nice to actually get the kind of childcare I was promised and told I could expect from her and her staff.

Anyone who knows me knows that I am a no-nonsense person. I am straight to the point, I fight for what I believe is right with both fists, and I do not back down until I am heard. Even if I don’t win – I will be heard. I am a sales manager, working in a field dominated by men. My communication style is honest, direct, but diplomatic. I call a spade a spade. I can be tough when I need to be, but overall, I am fair and I can certainly accept when I am wrong (as I am a lot). Over the years I have learned to pick my battles and accept my losses. There was a time I would throw full blown tantrums to get things to go my way, but I have mellowed a bit and have learned to let go and be accepting of the outcome I receive.

When it comes to these battles, the mama bear claws do come out. I feel justified especially when I feel we are not being treated fairly or being heard. When you pay a caregiver to make sure your son is being cared for, I don’t think it is too much to ask that they listen to what I need since I am a paying customer and they essentially are working for me. However, I was told that they “should not have to come to me” or “track me down” if my son is having issues. They are “too busy to communicate with me at my convenience”, although they expect me to “fix” my child’s issues FOR them.

You would think in all their experience, all of the caregivers he has been with (8 different daycares in 7 years) they would have picked up on the possibility that he may have ADHD. Especially since children with ADHD start to show signs as early as 18 months. But it is not so easy when the disability your child has does not impact his physical capabilities. And I don’t mean to disrespect those who have special needs above and beyond what my son has; however, special needs children are not always obvious. Children who have special needs, such as Shane’s, are typically overlooked because he appears to not have a disability; he is healthy, strong, very smart, and very physically able. His caregivers have all missed the obvious signs. They continued to look to me to “fix his issues” without me being there to see the full picture. It’s a secret magic potion that other working mothers MUST have. I must have missed the memo on how to get some of that since every other working mom has the capability of “fixing” their children without being around during the course of the day to understand what the problems are. My “fix” is typically directed as his caregivers because they are the adults and I rely on them to help me understand what is going on and what needs to be done to help Shane. This doesn't usually go over very well.

He has been continuously targeted, which to me is bullying. I urge other parents to see these as red flags. I was too naïve to realize what was going on. If I had to do it over again, they would be dealing with a bull rather than a bear. At one time, he was watched by cameras from the classroom. There were times they would notice he was behaving in a matter which they felt was inappropriate or "dangerous" even though his teacher said most of his antics were related to “being a boy”. But even a poke or a a laugh would cause him to be immediately removed from the classroom because the director felt he was “bullyish and distruptive”. The smallest incident would erupt into an escalated tantrum (which is scary in itself) because she would yank him from the room (physically), isolate him from the children, yell at him when he wouldn’t give her the answers she wanted, interrogate him to find out what was going on in his mind, all which made him feel like there was something wrong with him. Other times, parents that have known us from other daycares have gone to the school’s before/after school to let them know that Shane “doesn’t belong there and if they aren’t careful, they will be held liable for any harm done to other children.” My son has never done anything malicious to hurt anyone, not even a fly. But since they were warned, he was again, targeted. And the kids like to push his buttons because he is that kid. He is the one the kids like to get in trouble - “Watch what happens when we make him mad! It’s so fun! And then HE gets in trouble! Such a great game!” … for them. All of these incidents have only traumatized my sweet little boy.

So, as I have tried to express these needs to his so-called caregivers over the years, I am often told “we don’t have time to meet his needs” or “we have other children we are concerned about, not just Shane” or “we do not have the staff capability to be able to give him that kind of attention”, even though every time I looked to enroll him in a new facility, I specifically sought out organizations that would be willing to work with us. It is amazing that they all claimed to be the ones to help him. I have tried to fight for my son, tried to be his voice, but it is frustrating when you are not heard. I can only imagine his frustration as he struggles with feelings and worries that are too big for his young mind to comprehend.

I still fight for him despite the name calling. Every time I get a call, every time I get an email (and there are many) my question to them is “and what are you going to do on your end to help change this situation?” I have been open about his needs, open about what I am doing to move down the path to get the resources I need as a parent. I always meet the school in the middle and support them 100%. But I also support my son 100%. I have had to be proactive, very firm, very vocal, and have shed quite a few tears in front of perfect strangers. At the same time, I have found wonderful people who have been there to help, extending assistance and advice. I would not have found these resources without them. So, as far as I am concerned, every fight will be worth the end result.

For now, we have quit daycare - altogether. I have no faith in any of them. I have had the wonderful opportunity to change my schedule so I can pick him up from school every day. And my husband was able to be a little flexible during the morning hours to drop him off. Eliminating this social nightmare from his life has made quite a difference.
But I continue to make sure his voice is heard and his needs are met at school and other activities.

If that makes me“unfriendly” and “hostile”… So be it.

How I am raising my son…with ADHD

My son was asked to leave his first daycare program at the age of 16 months. Six daycare programs and six years later, I have finally realized that those environments have only made our lives more difficult instead of helping. It has taken me this many years to realize and accept that my son is different and it is not just a phase he will grow out of.
Over the years I have heard advice on how to raise my son, discipline my son, and provide positive reinforcement that will help him change his behavior miraculously. I have had childcare providers with twenty or more years of experience telling me they have all the answers. I have been told by therapists that he is acting out as a result of his father moving away.
But, year after year as I watch him grow, I watch him continue to struggle. He struggles with things that come so easily for other children. He struggles with even simple tasks like getting ready for bed, taking out the garbage. Our other two children never have these issues and I have not been able to understand why he cannot function the way that other children can. I have researched different types of behavioral problems. I have purchased quite a few books on different theories about why he has had so many challenges and behavioral problems. I have found bits and pieces of answers to some of my questions, but nothing has helped to improve our situation. I have spent a lot of time trying to understand what I am doing wrong, how I have failed him, how to be a better mother to him, and I lay awake at nights worrying if he will be okay.
When someone suggested to me that I may consider that he has ADHD, I did not really believe it. My son is a smart boy. He does well in school. Even with his behavior issues, he scored high marks in Kindergarten and continues to exceed standards in 1st grade. I thought children with ADHD did poorly in school. With him, it is strictly behavioral, so I dismissed it. I did hold him back a year because of his behavior. I held him back because I thought that his behavior was just a maturity issues, given a year, he would improve. Once he started kindergarten, the behavioral issues continued although his scholastic abilities were outstanding. I decided to put him in a private school thinking the smaller classroom size and resources would be much better than with a public school. However, as with every program he has been in, I began receiving phone calls regarding his explosive tantrums, not listening and disrespecting teachers, hitting and kicking teachers, and mistreating other children. My son is big for his age, a year older than the other children, so when he is physical with other children it is very scary for everyone. Parents see him as a threat to their children. Teachers are unable to physically remove him from situations because of his size and strength. If he makes a bad choice and is reprimanded, he tends to have a full-blown anxiety attack which makes the situation worse. It often leaves adults shaking their head and assuming that his parents just give him whatever he wants so he is throwing a tantrum. I try to do everything I can to work with schools and the time I spent with his Kindergarten teacher was above and beyond, for both of us. However, the school eventually made the decision that Shane was too much a liability for them and they were concerned about losing business because they could not control his behavior and they asked us to leave. When first grade began, we went back to the public school system. As he has continued to struggle, I was again asked if I thought it was a possibility he had ADHD, again I dismissed it until a dear friend asked if I had actually researched ADHD and if I was afraid of it. I admitted I had not researched it (shame on me), but was open to any possibility if it will help my son. Rather than lecture me about what ADHD is and why she thought my son had it, she wisely advised me to research it before I made up my mind. That night, I found an article that should have been titled “Shane Hepner”. The article described my son and all of his tendencies perfectly. I immediately began the process for having him evaluated, which we are in the middle of now. The school has been a great resource for us, although the process is slow. But, I finally feel like we are in a place where we can get assistance we need to help him improve.
One of the biggest struggles I have had over the years is having a support group; parents of children like mine who have struggled to know how to handle a child when he is having an explosive tantrum. I struggle to find childcare providers and teachers who actually have the ability to work with a child like Shane. I have providers asking ME what to do when he gets in one of his “moods” and starts to lose control over his body and mind. They ask me like I’m supposed to know in all of my 7 years of parenting experience.
So much of this is trial and error. I realize that many parents use the “trial and error” method, but that is in the foundation of a simple parenting concept “A+B=C”. When you have a child has physical or mental limitations, this simple equation turns algebraic in seconds. You find yourself having to spend a little more time and patience to work the problem in order to get the correct answer. Now, if anyone has ever taken algebra or other more challenging math classes, you know that it can be very frustrating to solve a problem, especially when you don’t understand how to solve it and there are no steps to explain how to solve it. I remember as a child I would sit and try to do long division for long periods of time, in tears, because I just couldn’t figure it out. Now I am a bit of a numbers girl. I love math, have even taken math classes for fun. So, I am hoping that at some point, as I continue to go through the steps of each problem we encounter, I will begin to become more skilled with parenting my child.
In thinking about this whole process, I realized that if I have struggled there must be many others. So, if I share my experiences and what I have tried, maybe someone will benefit from my ideas, solutions, and even failures. So, I thought I would start sharing some of the stories that I have on a daily basis. What daily challenges Shane has and what I have done to work through it. Maybe someone will have better solutions for me, maybe someone will benefit from my solutions.
For the first time in years I remember what it feels like to hope. Hope that there are others out there who can give me new ideas. Hope that my son can grow up and be happy, successful and rebuild his young self-esteem. That hope takes me to the next step in this process where the hopelessness I felt for so many years defeated me daily. I have hope that I can be good mother to my son and actually meet his very special needs. I have hope that I will not fail him because I feel confident that I am fighting a real battle for him now, not just invisible demons.