The arduous journey of a parent of a child with ADHD

The journey of the parent(s) of a child with Attention Deficit Hyperactivity Disorder (ADHD) is often arduous. The path is always different, but the suffering is present for everyone.

Some people have concerns about their child from the day of birth. Because the child sleeps little, cries constantly, moves around a lot, and never seems satisfied.

Others are shocked when their child, now an adult, ends up hospitalized for depression, in their 30s or even later.

These parents found their child energetic or dreamy, talkative, distracted, or a little clumsy. They didn't realize the chaos that reigned in their child's mind. They were unaware of the suffering that might be hidden inside this being with its hyperactive thoughts.

From one extreme to the other, the pattern is often the same.

Confronting a child's suffering, seeing them different from their neighbor's child, forces parents to change their idea of the perfect child they aspired to. They must learn to live with this child who is often suffering, sometimes difficult, and accept the reality of their daily life with ADHD.

Recognizing that your child suffers from ADHD, a condition that will complicate their life and the lives of their loved ones day after day...

Accepting to change one's behavior and parenting style towards one's child in order to help them...

All of this leads to a series of inevitable reactions, which vary from person to person.

However, in every testimony we receive here at the ADHD Belgium Association, certain feelings such as doubt, helplessness, relief, anger, guilt and suffering regularly recur.

Through some of these testimonies, we share with you the feelings of parents who live day-to-day with a child with ADHD.

Denial - doubt

They are characterized by the denial or minimization of reality.

The parent of a child suffering from ADHD prefers not to face the diagnosis in order to give themselves time to adapt.

The feeling that "something is wrong" most often originates with one person: the mother, the teacher, and less frequently the father or grandmother. Initially, this feeling is not shared and is even contradicted by those around the child, who struggle to accept that a child, this child they love so much, could be "different." For some, this then begins a game of "pulling a rope." The more one person says something is wrong, the more others defend the opposite.

Nathalie is a teacher in a small village school. She remembers Guillaume from his primary school days. Since kindergarten, teachers have come and gone, all complaining about Guillaume's behavior, which they all agreed was "different." He didn't listen to instructions, lost his belongings, was very slow, and had trouble fitting in with the group. His parents refused to acknowledge these facts. They accused each of Guillaume's teachers, in turn, of not being up to the task. At home, they claimed everything was fine, that simply being there for Guillaume was enough to make things go smoothly. When Guillaume started secondary school, his difficulties worsened, and his parents finally sought help because of the threat of him repeating a grade. When the diagnosis came, Guillaume's parents admitted that he had been struggling since he was very young but that they had refused to see it.

For Mathilde, it was her mother, Astrid, who had long suspected that her daughter had ADHD. It was while watching a television program that she recognized her daughter's behaviors in this disorder: terribly talkative, unable to sit still for more than two minutes, flitting from one activity to another at lightning speed without finishing anything, scattering her thoughts and belongings…

Astrid was worried about her daughter's schooling, but the father said he had been much worse at the same age and had ultimately turned out alright. The grandmother kept repeating that nowadays there's too much of a tendency to medicalize every little flaw, and the teachers attributed these behaviors to immaturity and a lack of motivation. It wasn't until the fourth year of secondary school, after two years of repeating grades, that the father agreed to seek a doctor's opinion, and the diagnosis of ADHD was made.

Before receiving an ADHD diagnosis for their child, parents have, in most cases, already gone through a long process. From psychologists to specialist doctors, from questions to reading, the parents themselves suspected the presence of ADHD before it was confirmed by the specialist.

Even if there has been prior anticipation, the announcement of the diagnosis is a shock.

"Suddenly, the sky fell on my head: what were they talking about? Who were they talking about? They were talking about Hyperactivity, Attention Deficit Hyperactivity Disorder. What on earth is that? It hit me like a slap in the face." Laura

"When, after six years of consultations and psychological follow-up, I finally received a diagnosis for my daughter, I initially collapsed." - Patricia

Then comes the denial itself:

"People talk to me about hyperactivity, but that doesn't make sense. Alex is just a lively child who needs to move." - Linda

"For years I suspected it, but I refused to consider it." - Axel

"If Benjamin behaves like this, it's the school's fault, not my child's." - Hélène

“Of course, I couldn’t believe my son suffered from hyperactivity! The term seemed so unlike him! So I figured that—in his case—it was more likely ‘hypoactivity’! We talked a lot, and the doctor lent me some very interesting books. In one of them, next to the description of hyperactivity, was ‘lunatism’… which sounded remarkably like what I called hypoactivity, and… most importantly, it perfectly matched Sébastien’s temperament, behavior, and learning difficulties! Victory!!!” Catherine

Family, school, friends, the media, and even doctors themselves sometimes contribute to reinforcing this feeling of doubt.

Despite numerous tests and interviews, followed by a report from a neuropsychiatrist or a child psychiatrist specializing in ADHD, the teacher persists in believing it's simply a matter of poor parenting. The grandmother continues to say that if you hadn't divorced, this child would be calmer. The general practitioner asks you to think carefully before labeling your child with that diagnosis.

"We saw a psychologist. She said: Nicolas lets off steam at school because he wants to be good at home so as not to upset his parents." - Claude

"People around us criticize us for being too strict with Mathilde." - Didier

"My family thinks Lucie is like this because I'm too lenient." - Sabine

“People around me often say about Baptiste, ‘He’s not as well-behaved as his two older siblings!’” – Laurent

“When Maximilia was diagnosed, I tried to make people understand the nature of this disability, the problems and behaviors that resulted from it. Some understood, others didn't, and some are still trying. Others simply refused to understand, blaming us, the parents.” – Muriel

"When we announced our desire to have Alexandre tested for ADHD, his psychologist called us crazy and claimed we were going to destroy our son." - Linda

"When I talk about ADHD, I always get the image of an anxious, depressed mother, and a father who's too often absent due to his work." - Hélène

“First separation for the settling-in period at daycare. Everything is going badly, and this failure is being blamed on my lack of effort. I am the cause of my child's refusal to integrate into this new environment and his rejecting behavior. My attitude is clearly causing my child anxiety, since he cries constantly. I am not a role model, and this is made clear to me without any tact whatsoever…” Pascale

"Since I had often said that Tom's behavior closely resembled that of his father, the child psychiatrist concluded that it was a relationship problem." - Patrick

"A psychiatrist told me, 'ADHD is an American thing; your son's problem is you!'" - Clothilde

Added to this is all the misinformation circulating everywhere, sometimes even through the media:

"I read in a magazine that ADHD is a term invented by teachers who find children too unruly and want them given tranquilizers." Iris

"In the United States, as soon as a child moves around a little too much, they say they're hyperactive. It's becoming the same thing here!" - Tania

Despite ourselves, these comments influence us; we still hesitate to believe in the presence of an organic pathology.

The fluctuating symptoms, influenced by life events, perpetuate this process. During calmer periods, one is tempted to think it wasn't ADHD, but simply a rough patch.

Some parents even refuse to talk about the disorder with the child concerned. And more frequently, they refuse to inform teachers, some family members, friends… especially those who have been “opposed” to the diagnosis.

Parents feel so alone day to day.

“In those moments, we did indeed feel alone, and we were unable to talk about it for fear of being judged as unfit parents.” – Jacques

They no longer know where to turn, and often, it's a desperate flight. They jump from one "miracle" therapy to another, rush from one doctor to another, eliminating clinics one by one. Until finally, they are told what they want to hear.

"He rescheduled our appointment, which I cancelled as soon as I got home because I was so disappointed with this doctor. We decided to change clinics and doctors." - Paul

"I slammed the door and had my child tested by two different doctors." - Carine

It's normal to try to find a doctor who is knowledgeable about ADHD, understands it, and is capable of prescribing the appropriate treatment. Establishing a trusting relationship with the doctor is just as important. Fortunately, most parents don't fall into the trap of the "panic search" we just described.

Anger - guilt - fear

When a parent finally accepts that their child has ADHD, they often react with a great deal of emotion, primarily anger. Anger at what one would have wanted differently is perfectly understandable.

"I'm green with rage and anger, and I don't understand anything they're telling me about my little boy, but above all, I'm worried." - Antoine

"What does that mean? That my daughter isn't normal, that I'm a bad mother?" Nathalie

On one hand, the announcement of the diagnosis relieves several months, or even several years, of questions.

“Finally, we had put a name to Marie’s suffering; for the first time, we were understood and acknowledged.” – Vinciane

“Finally, we can put words to Rudy’s ‘baffling’ behavior. We can look for ways to end our child’s suffering and the incomprehension and judgment of those around us.” – Valérie

“We had finally identified the source of our son’s suffering: Sébastien has Attention Deficit Disorder, without Hyperactivity, but with oppositional behavior and mild dyslexia. We could finally name his suffering! Much to Sébastien’s delight, in fact, whose first reaction—when I explained what he had—was to reply, ‘If you only knew how happy I am to know what I have, Mom, I thought I was useless!’” Julie

"Phew! I say 'Phew!' because it's such a relief to learn that I'm not the incapable and incompetent mother I always thought I was." Amélie

"What a relief! I was almost convinced that I wasn't cut out to have children. I blamed myself, my self-esteem had taken a hit, I judged myself as 'impatient, intolerant, incompetent, etc.'" Pascale

On the other hand, the announcement of this ADHD diagnosis leaves an indelible mark on the future.

"Will my daughter be like this her whole life? Will she be able to study? Get married? Will she be able to find and keep a job?" Vinciane

Even though we now know what we're fighting against, feelings of guilt can persist. Especially if, during the period of uncertainty preceding the diagnosis, the possibility of ADHD had already been raised.

Guilty of misbehaving towards the child, unaware of his disorder:

"When I think about everything I said to her, I feel so guilty. I called her an idiot, a lazybones, because she kept getting bad grades, even though she seemed to be studying. If I had known she had Attention Deficit Disorder..." Laura

"I'm a bad mother who only knows how to yell, punish, get angry, and hit." - Pascale

"Audrey has become too difficult. I have to become stricter and stricter, and I feel very guilty." - Clara

Guilty of being responsible for the presence of ADHD in their child:

"I even thought I was the one with the problem and I went to see a doctor." Benoît

"It's my fault. It's my overprotective, smothering behavior that's disrupting my child's development. But then again, who else can be blamed for these shortcomings?" Paule

“While we had a good relationship with Lucas’s caregivers, relations with the head caregiver deteriorated very quickly. He was insulting and blamed me for Lucas’s behavior. Every meeting with this person was hell for me, and it was destroying me emotionally. I ended up believing his story: I didn’t love my son, and everything was my fault.” – Ronald

Guilty in relation to the other children in the family:

"I often feel like I neglect my other children when he's here because I'm always on top of him, watching him or keeping him occupied." - Nathalie

The hereditary nature of the disease poses a very understandable problem of guilt, or anger towards the "responsible" parent.

Anger also arises from people's lack of understanding, from the cruelty some can show towards a child, one's own child:

“My son is 9 years old and has serious problems fitting in. He lacks self-confidence and is bullied, harassed, and even hit by children at his school, all simply because he is different. We have changed his school three times, and each time it's the same thing: he is insulted, verbally abused, and hit. To escape these children after school, he was almost hit by a car because they were chasing him.” – Muriel

This feeling of anger can take root, become entrenched, intensify, and even be projected onto those around them. It's easy to be angry at doctors who can make a diagnosis without being able to fully cure it, and to resent all those close friends and family members who refuse to consider the possibility of ADHD. Sometimes, the anger is directed at the child themselves. The parent resents them for being the way they are.

Some parents are really on edge, and they then react with exaggeration.

"Sometimes I'm so tired I want to hit him, just to make him stop talking for a moment." Pierre

"He exhausts me. Having to repeat myself constantly drives me crazy, and I start yelling and scolding him even though I know he doesn't mean to. But sometimes, I don't know how to react, and it just comes out." Christine

Anger is a strong emotion that can sometimes destroy, or push the parent to surpass themselves and become much stronger than they had thought, or we had thought.

Rejection - loneliness

Family life can be stressful at times. Add to that one or more people with ADHD, a disorder frequently characterized by a very low frustration tolerance threshold, concentration difficulties, learning disabilities, and oppositional behavior, and you have an explosive mix!

"What was hardest to bear was the feeling we sometimes had that we couldn't take it anymore." Jacques

"We are desperate; we are living and enduring a family and social hell." Iris

"Our family is slowly falling apart. Jérémy has a 5-year-old sister who is very upset by her brother's behavior." - Carine

"The house is constantly tense. When François is nervous, his sister feels compelled to imitate him, or laugh at his silly antics." - Françoise

"We even had to part with him at the age of 11 and send him to boarding school because the whole family would have collapsed." - Pascale

Friends and family members may start avoiding you, and family outings may be ruined one after another because of ADHD.

“I go out less and less. We hardly ever see our friends anymore, we don’t have anyone over, and we’re cutting ourselves off from the world a little more each day.” – Linda

"It's difficult to visit other children because of our child's behavior. We're afraid he'll hit them, break things, start screaming at the slightest frustration, etc." - Paule

“At the age of four or five, he would have dozens of tantrums a day, constantly hitting the other children at school or his sister. He wreaked havoc in the house day and night. We had no peace. We began to be rejected by both family and everyone around us.” – Bernard

Some parents are forced to stop working in order to take care of their child.

“Life at home sometimes resembles the life I had imagined, and then other times it's hell again. Nothing is ever guaranteed, and every day I have to educate and educate my son again and again. I never imagined for a second that being a mother would become a job for me, such an exhausting job. I stopped working outside the home to raise my son. Now I work from home. I so wish I could love this new job.” – Nathalie

As a general rule, even after receiving the diagnosis, parents often feel a sense of isolation, faced with a lack of information and the absence of effective therapeutic means.

“Even though he was correctly diagnosed at the hospital, I must say we still feel alone: we received absolutely no comfort from the hospital, very little information about the illness, and no advice on how to deal with our child.” – Muriel

Depression - discouragement

Many of the parents we meet are deeply saddened, even suffering from depression. Life with a child with ADHD is indeed challenging, and the journey to a diagnosis is long. Little by little, parents exhaust their emotional resources and become discouraged. They feel abandoned.

"I keep thinking I'll never make it. People keep putting obstacles in my way. I take one step forward and then ten steps back." - Laura

"I feel like I'm fighting a brick wall, a mountain. All the authorities are passing the buck. If this continues, I'm going to give up, let him destroy himself and others, and maybe then the authorities will finally do something." - Patricia

“I can’t take it anymore. Cyril never falls asleep before midnight. He hits, shouts, throws tantrums. He’s constantly arguing with his sister. He never listens. He always has to be right. He can’t stay quiet for 30 seconds. I don’t even have the energy to get angry anymore. My husband is never here. I feel so alone, I cry, I don’t know what to do.” – Laurence

For the parents, raising a child with ADHD can create tension. Mothers often find themselves alone in dealing with a large part of the problems related to their child's ADHD.

"My partner is a very good person, but not very knowledgeable about ADHD, so there are often conflicts." - Alexandra

“He thinks he’s the ideal father because, for him, earning a living so the children have everything they need is enough. I see things differently: I need him to help me take care of the children, cuddle them, educate them, talk to them, listen to them. A little bit of ‘presence’ would be normal, wouldn’t it? I’m the one responsible for them, all the time. I can’t take it anymore.” – Sabine

Awareness of the disorder's presence is no longer rejected; it dominates the individual, becoming omnipresent. The consequences, previously downplayed, are brought into sharp focus and pushed to the extreme.

For a parent, seeing their child suffer is terribly painful.

"The worst part is our son's loneliness. His friends only come over to play on his console. At school, he's pushed around, he has no friends, and he's alone at recess and dinner. It breaks my heart." - Pierre

“At school, she only has one friend, the same one for years. The other children make fun of her, her answers, her behavior. So she's sad, she withdraws into herself. One day, her 'only' friend made another one. Since then, she's been alone. I tell her to make others, that it's not a big deal, that it's normal, but it doesn't help. She can't seem to make other friends.” Paule

"It hurts me to see her brother and sister making fun of what she says, because it's often irrelevant." - Ronald

"At age 9, our son suffered from depression and lost all self-confidence: he believed we no longer loved him, that his teachers hated him, that he was mean, stupid, and foolish." - Françoise

Hope

Once the diagnosis is finally made, the initial shock of the announcement has passed, and the condition is recognized and accepted as such by the parents, treatment can begin. The parents place great hope in whatever the doctor proposes, whether it be psychotherapy, rehabilitation, or medication.

"Fanny, from now on, we're going to help you"; thank you, doctor, for that little phrase we'll never forget... Christine

“A pediatric neurologist diagnosed Maéva with ADHD (without the human element) last week. We're seeing him again next week so he can suggest a multimodal treatment plan. I'm so excited. We've been wondering about this for so long. Maéva will surely be smiling again soon.” Alexandra

Unfortunately, ADHD is a very complex disorder, especially because of the disorders frequently associated with this pathology: anxiety, learning difficulties, loss of self-esteem, etc.

The treatment is not always as effective as the parents hoped. Then begin various trials and errors, changes of school, therapists, medications...

“In total, Romain and I visited 14 different schools. Between the psychologist, the child psychiatrist, the speech therapist, and the neuropediatrician, there was little time left for anything else.” Victor

Most often, however, effective treatment is quickly implemented, and the child's life, as well as that of everyone around them, changes. The child can undertake rehabilitation to catch up on schoolwork. With the help of a psychologist, they can learn to identify their difficulties and find strategies to cope with them. Medication can help reduce impulsivity and increase concentration. They gradually regain their self-confidence. All family members rebuild their lives, and the future seems promising once again.

“Since my daughter was diagnosed, the way others see her has changed. Thanks to the diagnosis, her school and family are now able to help her the way she deserves.” – Léa

"Camille is doing much better since she found out what she has. Before, she felt crazy, now she knows she just has ADHD." - Vinciane

"With the help of the multidisciplinary team, psychomotor therapy sessions were set up to help Louis. It's helping him enormously. He's rediscovered his joy of living, and so have we." - Catherine

"For the past year and a half, after attending five different schools, my child has regained his smile. He is receiving multimodal treatment and takes medication to help him follow the class, stay attentive to the lesson, and interact positively with those around him." - Linda

Parents who are well-informed about what ADHD is can put in place ways to help their child.

"But now that we understand him better and can put ourselves in his shoes, I must say that family harmony has improved considerably, and I'm very happy about that." Antoine

“Our education remains extremely structured and sometimes even rigid, but we realize that our children need it.” – Nathalie

“The neurologist explained that I shouldn’t replace the therapists. I need to prioritize my role as a mother by giving my son love, understanding, and guidance, nothing more. He just lifted a huge weight off my shoulders. Because, like all parents, I thought I could ‘fix’ all of Maxime’s problems. All it took was a lot of love and patience.” Victoria

Little by little, the parents regain their optimism, their courage, and life regains its colors.

They change the way they look at their child, their way of functioning, and regain a sense of parental competence that is appropriate to their role.

"I adore my two children and I'm so happy to have had them; they push me to always move forward and go for it in life." - Pascale

"Our children are different, but we love them for who they are and just the way they are. We try to help them reach their full potential." - Iris

"ADHD, regardless of its 'degree,' is a daily struggle, but actually no more so than anything else, once that's accepted." - Muriel

“Sometimes when things are going really well and I get good comments about him from school, I cry tears of joy and he asks me why I’m crying. So I tell him it’s from joy and that I’m proud of him.” – Hélène

Conclusion

We have seen how difficult the journey of parents of a child with ADHD can sometimes be, full of obstacles, and we fully understand their exhaustion.

The outcome, at the end of this long journey, is fortunately in most cases happy and the evolution positive.

Because ADHD is also a source of qualities and a whole world of potential to discover, early diagnosis is essential.

Based on the numerous testimonials we receive at the ADHD Association Belgium, we observe that when a child is diagnosed and supported with multimodal treatment from a young age, ADHD has little to no impact on their self-esteem. The child continues to have confidence in themselves and their loved ones. Family life remains peaceful, and relationships with school are constructive.

We are pleased to note that there are more and more multidisciplinary centers in Belgium capable of diagnosing and treating people with ADHD.

Many inspired and enthusiastic parents, teachers, and therapists are wholeheartedly committed to their work and are ready to invest their time and effort in understanding and helping affected children.

They succeed in bringing out the hidden strengths of the child with ADHD. They allow him to gain assurance and self-confidence. They bring his many qualities to light.

It is together, by wholeheartedly engaging in the child's development process, that they build the child's future. The young person is encouraged to develop in a positive way. Their weaknesses do not disappear but become inextricably linked to their strengths.

Better information is therefore essential, so that this disorder is recognized by all as a real disability, a neurological dysfunction that penalizes and compromises the future life of the affected person.

People with ADHD are far more talented and gifted than they let on. They are full of creativity, spontaneity, and enthusiasm. They are resilient. They always get back up and take on new challenges. They are generous and happy to help. They usually have something special that makes them stand out, no matter what comes their way. It's important to remember that behind this sometimes unbearable child, there's a hidden Einstein.

May you discover it.