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Life as a mom of a child with ADHD

07/30/13 08:09
  • MARKSTEIN — MCT


Part One: The Discovery Process

As the parent of a child with ADHD, I have learned so much. This journey (eight years and counting) has had many bumps and bruises and constantly challenges me to question myself as a parent and a person. I have two boys, sixteen months apart, and a daughter less than two years behind.

The boys were so active that I started them in preschool early just to give them an outlet for their energy and to give me a few hours a week to recharge my battery. Still, I remember when I realized that the typical phrase "He's just 'all boy'" no longer applied.

Picking up my sons from preschool proved to be a very stressful time. They both got in trouble every day--even as youngsters--they would take their classmates' snack, hit, kick, and say inappropriate things. I was embarrassed and frustrated and felt uncertain about what to do. With an infant daughter in tow, I piled everyone in the car and prayed that the children would rest so we could get through the afternoon.

However, I would start to panic again around 3:30 wondering how I was going to get their energy out so they would sleep at night.

On the days they were not in school, I was in survival mode. I found every park in town and always hoped other children would be there as playmates. With their father constantly at work or traveling, I did not have a "relief pitcher" at 5:00 to save me. Bedtime was the only relief I had. The heightened energy level seemed outside of the norm to me, and yet people said I had "normal" boys. Maybe I just didn't know how to manage them, so I felt that it was my problem and largely my fault.

By the time my eldest was finishing preschool, he was in trouble so frequently that it was recommended that we have him tested for ADHD, so we did. The results, however, were inconclusive (he was only 5, after all, and many behaviors were seen as "all boy").

My middle child, John, could not sit still in preschool and the issues became magnified in kindergarten. He performed poorly on all of his school work and got in trouble with his peers on a daily basis. His teacher lovingly recommended that we have him tested, and even though he was also young, the results revealed that he had real attention issues. With a family history of such, it was not a surprise. We started him on some medication (more on this later), and saw instant improvement. However, the journey was far from over.


Part Two: The Effect on the Family

Having a child with ADHD not only affects them, it affects the entire family.

Because these children struggle with impulsivity and insatiability, their behavior is unpredictable at best. Words and actions spew forth in moments of frustration.The harder they try to keep it all together--because inside they truly want to be good, to be liked, to be loved, to be accepted--the more frustrating it becomes when their words and actions impede their success.

Parents and siblings are left not knowing what to do or say.

In our family, John can enter a room and completely transform it from a quiet place into a torrent. I have found myself quietly asking the other children to not say and do things to aggravate their brother. However, they are children and have intense personalities as well, so they frequently initiate or engage anyway.

Most days I desperately want to just get through the family time without a major conflict. Without knowing what will set off John, it is a fragile existence.

For example, I used to give John a number of prompts to get out of bed in the morning. His siblings would be dressed and eating breakfast while he slumbered....refusing to get out of bed. One morning in particular, he screamed at me to stay with him while he dressed. It took him so long to get ready that I did not have the luxury of waiting any longer, and I did not want to reward his defiance. Once we came downstairs, he screamed at me to remain with him while he ate, but instead of eating, he played with a toy. I simply could not win! The constant power struggle and game playing became exhausting.

Someone reading this might suggest consequences, rewards, extra loving, scolding, yelling, therapy, medication, support groups. I can assure you, I have tried them all. Many times.

The latest therapist has been working with the entire family on consistency. If there is an infraction, John has an immediate consequence. However, his mood and behavior are still unpredictable. On the rare occasions the morning goes well, he gets praise and a reward. One might think that would teach John to work to control his impulses. Unfortunately, the next day the same motivator (typically the use of his iTouch) doesn’t seem to matter. The afternoons are more of the same, and problems persist off and on until bedtime.

Every day, I reiterate that I love him no matter what. I am just hoping that eventually he will feel secure in my unconditional love and will do what I ask without a long series of tests.


Part Three: The Effect on Friendships

Unfortunately, John has trouble finding and maintaining friendships as a result of his impulsivity and need to retreat when he gets overwhelmed.

Over the years, I have invited classmates to play. Things seem to go well as long as I make specific suggestions about what to do, but often I find the friend playing alone or with John’s brother. After some searching, I find John playing alone in his room defending why he no longer wants to play. The reason usually involves the playmates’ lack of desire to do exactly what John wants.

This low tolerance of others may be derived from his own feelings of being constantly misunderstood. He has to work much harder than the next person just to keep it all together. We cannot fully appreciate the inner struggle he experiences as he tries to fit in and control his impulses.

Honestly, it could be that John’s introverted and independent personality are at the root of his issues with his peers. He likes to “do his own thing” but he also really wants to have friends and be liked. He is very thoughtful, sweet and has many interests and abilities. He has a lot to offer but his off-putting behavior makes it hard for other children to see past the moment to recognize the wonderful little boy inside.

As the parent, there is only so much one can do to help a child with his/her friendships. I can guide, make suggestions, and make John aware of pro-social behaviors. I can create playdate situations that have a greater chance of success by limiting the activities to those things I know the boys have in common. For example, I can invite a friend over specifically for legos or skateboarding. I can keep the playdates shorter than I would for his siblings so he does not feel inclined to retreat.

Teachers also help with pro-social actions, but typically John receives negative feedback for inappropriate behavior at school.

Focusing on the positive is best, but when things are going well we don’t often remember to give praise. We wait for those naughty moments, which creates a downward spiral.

John feels lower self esteem and then is left not knowing how to behave. School, the place where he is most likely to build friendships, has presented a huge struggle for John. As he has only just completed fourth grade, the troubles for him are only likely to amplify as the demands are greater and peer relationships become paramount.

Part Four: Life at School and in Sports: Life with Structure

School is the most difficult place for John to succeed on a regular basis.

Even with medication, he struggles all day, every day to focus on the task at hand, to control his impulses, submit complete work on time, and get along with his classmates.

When teachers have to constantly remind him to behave, his classmates become weary of the disruptions and lose patience with him. They may tacitly tolerate him, but most will not befriend the child that is always causing issues in class.

Every year, it seems, there is at least one child who simply can't stand the disruptions and becomes a thorn in John's side--tattling on him for the slightest (in his view) infraction. The teacher is left disciplining John in order to demonstrate that the behavior will not be permitted.

After several years of these sorts of issues, John was told that he would be on a probationary year for fourth grade (he attends an independent school). It was mandated that we take steps to help improve his behavior.

This involved tutoring, occupational therapy, work with a psychiatrist, a psychologist and accommodations during school with classwork. He simply was not measuring up in 3rd grade, and with the prospect of even more demands, the school personnel was concerned John would not be able to succeed.

In the spring of 3rd grade, we actively searched for other school options that might better suit John's special issues.

For here was our child--very, very bright but unable to complete class work independently. He had trouble maintaining friendships and was so disruptive that others could not learn. He was so agitated trying to do homework, that the time at home was not restorative in the way he needed. The medication he took caused him to lose his appetite and lose sleep, which contributed even more to his agitation.

Unfortunately, we could not find a school that was a good fit. Our best option was to stay put and work with the administrators and counselors as best we could.

The school placed John with a very understanding teacher (yet again), but even the best teacher grows tired of the interference and inappropriate behavior. These troubles still lead to frequent visits to the office or "talks" with the teacher.

After so much trouble, John's self esteem is even lower, even though he receives recognition that he is bright, capable, likable, cute, and talented in more ways than we can count.

His insight for someone his age is truly staggering, and yet his lack of "executive functioning" prevents him from fully realizing all these gifts.

Life in structured sports, where John is asked to perform specific tasks, resembles school to him. He resents being told what to do and, much like with his peers, would rather "do his own thing".

His prowess on the soccer field is overshadowed by his impulsivity and coaches are often left scratching their heads as to how to harness the raw talent and help John become more of a team player. John wants to advance and receive recognition for his skill without realizing how he often stands in his own way.


Part Five: Treatment

Finding the best way to help a child with ADHD is like traveling through a maze. There are many pathways and many dead ends. Parents and teachers must accept that it will take much trial and error to find the right path for each individual child.

When John first received his diagnosis, we decided to try medication. We were a bit reluctant to medicate, but then we thought: “What if it helps? What if it is like people say of someone who needs glasses? The medicine might actually work!”

We met with his pediatrician and started John on a low dose of one medicine, and we did see improvement at school. The side effects of loss of appetite and sleeplessness and mood swings were apparent, but we thought if he could succeed at school, he would feel better about himself and be more relaxed.

This was only partly true.

Unfortunately, most medications for ADHD only work for a certain period of time and have unappealing side effects. If insurance does not cover the cost, these medicines can be very pricey as well.

When the first medicine no longer seemed to have an impact, we tried several others. One medication caused John to try to pull out his eyelashes during school! Another made him even angrier and another just didn’t seem to help him focus at all. As a boy of diminutive stature already, we were worried that these medicines would stunt his growth and/or be too strong for his system.

We visited a psychiatrist at the end of third grade, and John was placed on two medications--one for focus and one to help moderate the impulsivity. Neither one work very consistently, but without medication, John can barely function at school or at home.

We tested this out on several occasions and medication was deemed totally necessary.

Fortunately, with a more structured discipline plan, we have been able to remove one of the medications from the daily regimen. We are slowly teaching John strategies to manage his impulses instead of relying on medicine alone to do it for him.

Some parents like to try more organic approaches--reading parenting books, adjusting the child’s diet, introducing more exercise or martial arts, going to therapy, encouraging meditation. We do a variety of these approaches as well.

John’s palate is more limited by the day, so varying the diet is a challenge and while exercise helps, structured sports are a source of frustration. Free time in his room works well, but when there are assignments due and siblings have activities, we do not have the luxury of playing at home all afternoon. We must constantly balance!

Unfortunately, meeting with a therapist in an office was not having the desired results because John is able to behave and think logically in a therapy session and does not typically exhibit the troubling behaviors that emerge elsewhere. We needed someone who could see our family in action, for it is in the moments when something or someone aggravates him that he becomes impulsive. All reason flies out of the window.

We finally contacted Alexander Youth Network, an organization with a wide array of services to help children with emotional and behavioral issues.

The in-home therapy seemed to match our needs best. This process has been amazing and is making huge improvements in how we interact as a family.

John has been the most reluctant family member to embrace the zero-tolerance policies, but he is learning that the impulsive words and behavior cause him to lose privileges EVERY time. For parents, it can be exhausting to implement, but the benefits far outweigh the effort.

Each child responds differently to the various techniques. There is no silver bullet and like it is with infants, one behavior may last for only a few weeks, but then a new one supplants it.

Parents, teachers, therapists and others are left wondering what to do next. I do know that continuing to demonstrate love and to reinforce the idea--I love you, but I do not love your actions--is key to maintaining John’s sense of well being in the sight of so much frustration.


Part Six: Consequences and Ideals


When my children misbehave, I send them to time out, have them run stairs to get out their energy (psychologist recommended), and take away privileges. When they behave, I try to provide incentives such as treats, play dates, “screen” time, extra snuggle time with me after everyone else goes to bed. I do not have the benefit of a partner in the house to echo my sentiments in a given moment. I must handle the situation before it escalates and hope that the days end with more rewards than consequences.

Recently the children and I were traveling with a friend and John had a major outburst. Rarely do other parents witness what I experience on an almost daily basis, so my friend was shocked at the behavior John exhibited when his anger got the best of him. She said she would have spanked his bottom. I get that. However, violence does not work with a child who is already prone to it.

I have learned that matching anger with anger does not work. My only defense is to remain calm and try to exit the situation before it escalates. It is often difficult to manage behavior in a public forum or while in the car.

However, negative behavior, disobedience and disrespect will not be tolerated no matter where or when they occur.

In the past, I have tried tears, which were genuine, of course. John seemed unmoved (in the moment) by my sadness. He feels only what he feels, just like anyone, but when I desperately wanted the situation to change and it did not, I felt helpless and hopeless. The tears just came.

Ideally, I must be consistent and remain calm no matter what spews. I talk to friends who have similar experiences to help me. I work with the school counselor and the therapist. I work with John’s dad on solutions. I snuggle with John when he goes to sleep at night and remind him how much I love him. I study the love languages (there are 5 according to Chapman) and try to love John in the way that he needs me to love him.

I learned that he really wants my time--his siblings want that and other things. Unfortunately, I don’t always want to give him my time in the heat of the moment and I do not want to reinforce the negative behavior. Once John is able to calm down, I realize that I have to give him what he needs no matter how I am still feeling. He is my son and he needs my unconditional love as he navigates these troubled waters!


Part Seven: Labels


Over the years, I have heard a number of people say things like, “Oh, we all have ADHD” or “I don’t like labels. Labels give people an excuse to misbehave.” Others say, “Labeling and then medicating children is not necessary. What they need is a different diet and more structure and discipline.”

Perhaps in some cases, children who have other issues are misdiagnosed as having ADHD. Perhaps some children would simply benefit from a different parenting technique, menu, or environment. However, I have three children and believe that I am raising them the same, so why do the techniques work for two but not for John?

John has real difficulty with focus, has impulsivity, insatiability, and his body and mind are constantly moving and churning. We have had him tested twice, and both times the psychologists gave him the ADHD label.

John’s issues present challenges that are unique to him. His experiences at school, the testing results, and behavior at home all point to him having a clear case of Attention Deficit Hyperactive Disorder. Even before John was tested I knew he had a level of impulsivity that exceeded that of his siblings. His older brother also showed similar behaviors, but his issues were still deemed within the “norm.” He has been able to work within the “system” and succeed in school and sports without as much struggle.

Since I had been a classroom teacher prior to having my own children, I had experience with children who had more that the “normal” amount of difficulty focusing in school and completing assignments. The heightened energy level and lack of focus were recognizable in my own son, but I found that the strategies I used in the classroom did not translate the same way at home. While some think everyone has trouble focusing, no one can really appreciate how difficult it is for John (and for us) every day.

John knows he has more than the average share of trouble with attention. He knows he takes medication every morning to help him. He knows that he says and does things he should not, but he seems to lack a filter at times and struggles to control himself. He gets in trouble at home, at school, and at soccer practice.

Our therapist believes that John is oppositional and that by teaching him strategies, he can gain greater self control.

I believe this is true because when he plays at a friend’s house or is doing something he enjoys, John is truly amazing. He can completely hold it together and charm anyone lucky enough to look into his big, blue eyes. I always tell John, “I know you have trouble focusing. It doesn’t mean you can’t do something. It just means you will have to work harder, but you can do it.” I feel that by acknowledging his situation, I am letting him know that I understand it is HARD but it is not IMPOSSIBLE.


Part Eight: The Gift of ADHD

Last year when our situation seemed hopeless, I went to the public library and leafed through several books on ADHD. I stumbled upon a book entitled, “The Gift of ADHD” by Lara Honos. I have to admit, I was as cynical about the “gifts” as Honos suspected her audience would be.

But as I read the pages, I began to cry.

I realized that my son John, my forever challenging son, had immeasurable gifts, maybe some as a result of his unique brain. As I reflected on his perpetual insights about people and behaviors, I knew that if I could just safely guide John to adulthood, he would do great things.

John understands what motivates people beyond his years. He sees things in people’s faces that most people don’t even notice. He can see my mad face, my sad face, in a way others don’t. He can detect sarcasm and insincerity in the slightest of phrases.

He appreciates the little gifts and can hyper-focus on a task until it is as perfect as he can make it. He can build things, solve complicated math in his head, pick up piano by ear, and remember details most of us overlook.

Perhaps, as the book suggests, he does not have a deficit. After all, his active mind is constantly working to solve problems and understand the world.

Unfortunately, because I believed (and still believe) that his ADHD diagnosis makes things harder for him, I inadvertently allowed him to become more argumentative. I explained away some of the negative behaviors and he began to believe that he had a right to argue about everything with me. The discussions would escalate and we would both be left feeling frustrated.

Now, instead of just addressing his attention issues, we are focused on helping John control his impulse to be oppositional.

We cannot allow the defiance--no matter what the reasons. John will constantly have to work to control himself. I hope that the more he feels the power of his gifts, the less likely he will be to defy.

The work I have done at Alexander Youth Network, not only as a client but as a volunteer, has given me hope for troubled youth in our community. The professionals at AYN work with children who have suffered trauma to re-train their brains using things like yoga, art and play therapy, music, pet therapy and active meditation. Of these, John is most inclined to draw.

For his birthday, I gave him a sketch pad and drawing pencils. He loves to sit at the desk in his room and draw. His goal is to fill the sketchpad with a wide variety of work, and he is quite talented.

His ability to focus intently on tasks of interest makes him a uniquely skilled builder, creative thinker, artist. John loves the praise he receives for the good work, and his self esteem improves in these kinds of moments.

I have the power to create other moments as well. For example, one of my favorite things to say to John is, “I am looking forward to just spending time with you.” When I do, he feels in charge and wanted and loved, even if I only have a few minutes before bed time.

I am convinced that if I can help get John safely to adulthood, he will do amazing things. Amazing.

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