The Laborious Journey of the Parent of a Child with ADHD

The journey for the parent or parents of a child with Attention Deficit Disorder with or without Hyperactivity (ADD/ADHD) is often a difficult one. The path is always different, but the suffering is there for everyone. Some people have been asking questions about their child since the day he was born. Because he sleeps so little, cries all the time, fidgets so much and never seems to be satisfied. Others are stunned when their child, now an adult, is hospitalised for depression, at the age of 30 or even later. These parents thought their child was dynamic or over the moon, talkative, distracted or a little clumsy. They didn't realise the disorder that reigned in his brain. They were unaware of the suffering that might be lurking inside this hyper-active being. From one extreme to the other, the pattern is often the same. Coming face to face with a child's suffering, seeing him or her different from the neighbour's child, forces parents to change their idea of the perfect child they aspired to. They have to learn to live with this often suffering, sometimes difficult child and accept the reality of their day-to-day life with ADHD. Acknowledging that your child suffers from ADHD, a condition that day after day will complicate his life and that of his family... Agreeing to change their behaviour and upbringing towards their child in order to help them... All this leads to a series of inevitable reactions, which vary from person to person. However, in every testimony we receive here at Association TDA/H Belgique, certain feelings such as doubt, powerlessness, relief, anger, guilt and suffering recur regularly. 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 This is characterised by the denial or minimisation of reality. The parent of a child with ADHD prefers not to face the diagnosis in order to give themselves time to adapt. The feeling that "something is not right" most often comes from the first person: the mother, the teacher, more rarely the father or grandmother. At first, this feeling is not shared and is even contradicted by those around them, who find it hard to accept that a child, the child we love so much, could be "different". So for some, a game of 'tug of war' begins. The more one says that something is wrong, the more the others defend the opposite. Nathalie is a teacher in a small village school. She remembers Guillaume when he was at primary school. From nursery school onwards, teacher after teacher complained about Guillaume's behaviour, which they all agreed was 'different'. He didn't listen to instructions, lost his things, was very slow and had difficulty fitting in with the group. The parents refused to admit this. They took turns accusing Guillaume's various teachers of not being up to the job. At home, they claimed that everything was fine, that all they had to do was be close to Guillaume for things to go well. When Guillaume entered secondary school, his difficulties became more acute, and his parents ended up seeking help when they were faced with the threat of having to repeat a year. When the diagnosis came, Guillaume's parents admitted that he had been having difficulties since he was a child, but that they hadn't wanted to see him. For Mathilde, it was her mother, Astrid, who had thought for a very long time that her daughter had ADHD. It was while watching a television programme that she recognised her daughter's behaviour in this disorder: terribly talkative, unable to sit still for more than two minutes, moving from one activity to another at lightning speed without finishing anything, scattering herself in her speeches and her affairs... Astrid feared for her daughter's future at school, but her father said that he had been much worse at the same age and that he had turned out all right in the end; her grandmother kept saying that these days there's too much emphasis on medicalising the slightest defect, and the teachers blamed these behaviours on immaturity and lack of motivation. It wasn't until the fourth year of secondary school and two repeats that Dad agreed to seek medical advice and the diagnosis of ADD/ADHD. Before their child is diagnosed with ADHD, most parents have already travelled a long road. From psychologists to medical specialists, from questioning to reading, the parents themselves have assumed the presence of ADHD before it is confirmed by the specialist. Even if the diagnosis had been anticipated, it came as a shock. "Suddenly the sky is falling: what am I being told? What are they talking about? They're talking about Hyperactivity, Attention Deficit. What's that all about? It was like a slap in the face. Laura "For my daughter, when after 6 years of consultations and psychological follow-up I finally got a diagnosis, I was devastated at first". Patricia Then came the denial itself: "They talk to me about hyperactivity, but that doesn't make sense. Alex is just a lively child who needs to move. Linda "I've suspected it for years but refused to consider it". Axel "If Benjamin behaves like that it's the school's fault, not my child's." Hélène "Of course, I couldn't believe that my son suffered from hyperactivity! The term had so little to do with him! So I said to myself that - in his case - it was more a case of "hypoactivity"! We talked a lot and the doctor lent me some very interesting books. In one of them, alongside the description of hyperactivity, there was a description of "lunatism"... which sounded a lot like what I called hypoactivity and... above all, it corresponded perfectly to Sébastien's temperament, behaviour and learning difficulties! Victory! ! " Catherine Family, school, friends, the media and even the doctors themselves sometimes contribute to this feeling of doubt. Despite numerous tests and interviews, followed by a report from a neuropsychiatrist or child psychiatrist specialising in ADHD, the teacher persists in believing that it's simply a case of bad upbringing. The grandmother continues to say that if you hadn't divorced, this child would be calmer. The GP asks you to think carefully before putting this "label" on your child. "We saw a psychologist. She said that Nicolas lets off steam at school because he wants to be nice at home so as not to upset his parents. Claude "People around us criticise us for being too strict with Mathilde. Didier "My family thinks Lucie is like that because I'm too lax. Sabine "People around me often say about Baptiste: "He's not as well-behaved as the two older children! "Laurent "When Maximilia was diagnosed, I tried to make people understand the nature of this disability and the problems and behaviours that stemmed from it. Some people understood, others didn't and some are still trying. Others simply didn't want to understand, blaming it on us, the parents." Muriel "When we announced our desire to have Alexandre examined to determine whether he had ADD/ADHD, his psychologist called us crazy and said we were going to destroy our son. Linda "When I talk about ADD/ADHD, I always get the image of an anxious, depressed mum and a dad who's away too much because of his job". Hélène "First separation to adapt to nursery school. Everything went badly and the failure was attributed to my unwillingness. I was the cause of my child's refusal to integrate into this new environment and of his rejectionist behaviour. It's clear that my attitude is making my child anxious, as he never stops crying. I'm not a role model, and I've been made to understand that very rudely... "Pascale "As I'd often said that Tom's behaviour was very similar to his father's, the child psychiatrist deduced that it was a relationship problem". Patrick "A psychiatrist told me that ADD/ADHD was an American thing, that your son's problem was you! Clothilde Then there's all the misinformation circulating everywhere, sometimes even through the media: "I read in a magazine that ADD/ADHD is a term invented by teachers who think their children are too turbulent and want them to be given tranquillisers". Iris "In the United States, as soon as a child fidgets a bit too much, they're said to be hyperactive. It's becoming the same thing here! Tania In spite of ourselves, these comments influence us, and we still hesitate to believe in the presence of an organic pathology. The increase and decrease in symptoms, depending on life events, maintains this process. During a calmer period, we're tempted to think that it wasn't ADD/ADHD, but simply a slightly difficult time. Some parents even refuse to talk to their child about the disorder. And more often, they refuse to tell teachers, certain family members, friends... especially people who have shown themselves to be 'opposed' to the diagnosis. Parents feel so alone on a day-to-day basis. "At times like these, we really did feel alone, and we were unable to talk about it for fear of being judged unworthy parents. Jacques They don't know where to turn, and often it's a case of running away. They leap from one "miracle" therapy to another, rush from one doctor to another, eliminating the clinics they consult one by one. Until finally, they are told what they want to hear. "He gave us another appointment, which I cancelled as soon as I got home because I was too disappointed with the 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 knows about ADHD, understands it and is able to prescribe the right treatment. Establishing a relationship of trust with the doctor is just as important. Fortunately, most parents do not fall into the trap of 'panic seeking', which we have just described. Anger - guilt - fear When parents finally accept that their child has ADHD, they often react with a great deal of emotion, mainly anger. Anger at what they would have wanted otherwise is understandable. "I'm green with rage and anger and I don't understand a word they're saying 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 the one hand, the announcement of the diagnosis is a relief after months or even years of questioning. "Finally, we had put a name to Marie's suffering, and for the first time we were understood and recognised. Vinciane "At last we could put words to Rudy's 'confusing' behaviour. We can look for ways to put an end to our child's suffering and to the incomprehension and judgements of the people around us." Valérie "We had finally put our finger on our son's suffering: Sébastien has Attention Deficit Disorder, without Hyperactivity, but with oppositional behaviour and mild dyslexia. So we were able to name this suffering! Much to Sébastien's delight, his first reaction - when I explained to him what he was suffering from - was to say "if you only knew how happy I am to know what I've got, Mum, I thought I was rubbish! Julie "Phew! I say 'phew' because it's a great relief to learn that I'm not the incompetent mother I always thought I was until now. Amélie What a relief, I was almost convinced that I wasn't cut out to have children, I was blaming myself, my self-esteem had taken a hit, I judged myself as "not patient, intolerant, incompetent, etc." " Pascale On the other hand, being diagnosed with ADHD leaves an indelible mark on the future. "Will my daughter be like this for the rest of her life? Will she be able to study? Will she be able to get married? Will she be able to find and keep a job? Vinciane Even if you now know what you're up against, the feeling of guilt can linger. Especially if, during the wanderings preceding the announcement, the ADHD hypothesis had already been raised. Guilt for having behaved badly towards the child, in ignorance of his disorder: "When I think of all the things I said to him. I blame myself so much. I called her stupid, lazy, because she gave me bad marks, even though she seemed to be studying. If I'd known she had Attention Deficit..." Laura "I'm a bad mother who only knows how to shout, punish, get angry and hit". Pascale "Audrey has become too difficult. I have to become stricter and stricter and I feel very guilty about it. Clara Guilty of being responsible for her child's ADHD: "I even thought I was the one with the problem and went for help. Benoît "It's my fault. I'm the one who is disrupting my child's development with my over-protective, smothering behaviour. But then again, who else can be blamed for all this but me? Paule "We had a good relationship with Lucas's teachers, but very quickly relations with the head teacher deteriorated. He was insulting and blamed me for Lucas's behaviour. Every meeting with this person is hell for me and it destroys my morale. I end up believing him: I don't love my son and it's all my fault. Ronald Guilty compared to the other children in the family: "I often feel like I'm neglecting my other children when he's around because I'm always after him to keep an eye on him or keep him occupied." Nathalie The hereditary nature of the disease raises understandable issues of guilt and anger towards the 'responsible' parent. Anger, too, at people's lack of understanding, at the meanness that some people can show towards a child, their child: "My son is 9 years old and is having major problems integrating. He's a child who doesn't have any self-confidence, and he gets picked on, harassed and even beaten up by children at his school, all simply because he's different. We've changed schools three times and each time it's the same thing: he's insulted, abused and hit. To get away from these children at the school gate, he was almost run over by a car as they chased after him. Muriel This feeling of anger can settle in, become entrenched and amplified, and can also be projected onto those around us. It's easy to be angry at doctors who can confirm a diagnosis without being able to do anything about it, and to be angry at all those people close to you who refuse to accept the possibility of ADHD. Sometimes the anger is directed at the child himself. The parent resents him for being the way he is. Some parents' nerves are really on edge, and they overreact. "I'm so tired sometimes that I want to hit her, just to get him to stop talking for a moment." Pierre "He exhausts me. Having to repeat myself over and over again drives me crazy, and I start shouting and shouting at him even though I know he's not doing it on purpose. But sometimes I don't know how to react, and it just comes out." Christine Anger is a powerful emotion that can sometimes be devastating, or it can push a parent to go beyond their limits and become much stronger than they or we ever thought possible. Rejection - loneliness Family life can be stressful. Add to that one or more people with ADHD, a disorder frequently characterised by a very low frustration tolerance threshold, concentration difficulties, learning difficulties and opposition, and you have an explosive mixture! "What was hardest to live with was the feeling we sometimes had that we couldn't take it any more". Jacques "We're desperate, we're living and suffering a family and social hell". Iris "Our family is gradually being destroyed. Jérémy has a 5-year-old sister who is very disturbed by her brother's attitude. Carine "The house is under constant stress. When François is nervous, his sister feels obliged to imitate him or laugh at his nonsense. Françoise "We even had to separate from him when he was 11 and put him in a boarding school because the whole family would have collapsed. Pascale Friends and family members may start to avoid you, and family outings may be ruined one after another because of ADD/ADHD. "I go out less and less. We hardly see our friends any more, we don't have anyone over and we cut ourselves off from the world a little more every day. Linda "It's difficult to go on visits because of our child's behaviour. We're afraid he'll hit the other children, break things, start screaming at the slightest frustration, etc.". Paule "At the age of 4 or 5, he was throwing dozens of tantrums a day, constantly hitting the other children at school or his sister. He devastated the house day and night. We had no rest. We began to be rejected by the family and everyone around us. Bernard Some parents are forced to stop working in order to look after their child. "Sometimes life at home is just like I'd imagined it would be, and then other times it's back to hell. It's never easy, and every day I have to educate my son over and over again. I never imagined for a second that being a mum would become a job for me, such an exhausting job. I stopped working outside the home to bring up my son. Now I work from home. I'd really like to enjoy this new job. Nathalie As a general rule, even after being diagnosed, parents often feel alone, faced with a lack of information and the absence of effective treatments. "Even though he was diagnosed at the hospital, I have to say that we still feel alone: we received absolutely no reassurance from the hospital, very little information about the disease, and no advice on how to deal with our child. Muriel Depression - discouragement Many of the parents we meet are in a state of great depression, even real depression. Life with a child with ADHD is indeed trying, and it takes a long time to get a diagnosis. Little by little, parents exhaust their mental resources and become discouraged. They feel abandoned. "I tell myself I'll never make it. They keep putting obstacles in my way. I take one step forward and then ten back. Laura "I feel like I'm fighting against a wall, a mountain. All the authorities are passing the quid. If this continues, I'll give up, let him destroy himself and others, and maybe the authorities will finally do something. Patricia "I can't take it any more. Cyril never goes to sleep before midnight. He hits, screams and throws tantrums. He fights all the time with his sister. He doesn't listen to anything. He always wants to be right. He won't sit still for 30 seconds. I don't even have the courage to get angry any more. My husband is never there. I feel lonely, I cry, I don't know what to do any more. Laurence For parents, bringing up a child with ADD/ADHD can lead to tensions. Mothers are often left alone to deal with many of the problems associated with their child's ADHD. "My partner is a very good person, but he doesn't know much about ADHD, so there's often conflict. Alexandra "He thinks he's the ideal father, because for him it's enough to earn a living so that the children have everything they need. I see things differently: I need him to help me look after the children, cuddle them, educate them, talk to them, listen to them. A bit of 'presence' would still be normal. I'm the one in charge, all the time. I can't take it any more. Sabine Awareness of the presence of the disorder is no longer rejected; it dominates the subject and becomes omnipresent. The consequences, hitherto minimised, are brought to the fore, pushed to the extreme. For a parent, seeing their child suffer is terribly painful. "The worst thing is how lonely our son is. His friends only come to the house to play on his console. At school, he's pushed around, has no friends and is alone at playtime and at dinner. It breaks my heart. Pierre "At school, she only has one friend, the same one she's had for years. The other children make fun of her, her answers, her behaviour. So she feels sad and withdraws into herself. One day, her 'only' friend took another. She's been alone ever since. I tell her to worry about the others, that it's not serious, that it's normal, but nothing helps. She can't manage to make any other girlfriends. Paule "It hurts me to see that her brother and sister make fun of what she says, because it's often irrelevant. Ronald "At the age of 9, our son suffered from depression and lost all confidence in himself: he thought we didn't love him any more, that his teachers hated him, that he was mean, stupid and silly. Françoise Hope for the future Once the diagnosis has finally been made, the shock of the news has passed, and the pathology has been recognised and accepted as such by the parents, treatment can be put in place. Parents place a lot of hope in what the doctor suggests, whether it's psychotherapy, re-education or medication. "Fanny, from now on, we're going to help you"; thank you, Doctor, for that little phrase that we'll never forget... ". Christine "A neuropaediatrician diagnosed Maéva with ADD (no H) last week. We're seeing him again next week so that he can suggest a multimodal treatment. I'm really looking forward to it. We've been wondering about this for so long. I'm sure Maéva will soon be smiling again. Alexandra Unfortunately, ADD/ADHD is a very complex disorder, especially because of the problems frequently associated with it: anxiety, learning difficulties, loss of self-esteem, etc. The treatment is not always as effective as it could be. Treatment is not always as effective as parents had hoped. So began a series of trials and tribulations, changes of school, therapists, medication... "In all, Romain and I went through 14 schools. Between the psychologist, the child psychiatrist, the speech therapist and the neuropaediatrician, there was little time left for anything else. Victor More often than not, however, effective treatment is quickly put in place, and the child's life changes, as do those around him. The child can undertake re-education to make up for lost time at school. With the help of a psychologist, they can learn to identify their difficulties and find strategies for dealing with them. Medication can help reduce impulsiveness and improve concentration. They gradually regain their self-confidence. Everyone in the family is rebuilding, and the future looks bright again. "Since my daughter was diagnosed, other people's attitudes have changed. Thanks to the diagnosis, the school and those close to her are now able to help her in the way she deserves. Léa "Camille is much better now that she knows what's wrong with her. Before, she felt crazy, now she knows she just has ADD/ADHD." Vinciane "With the help of the multidisciplinary team, psychomotricity sessions have been set up to help Louis. This has helped him enormously. He's got his zest for life back, and so have we." Catherine "For a year and a half now, my child has been smiling again after 5 schools. He has a multimodal treatment and takes medication to help him follow the class, pay attention to what's going on in class and interact positively with those around him." Linda Parents who are well informed about ADD/ADHD can take steps to help their child. "But now that we're better able to understand him and put ourselves in his shoes, I have to say that family harmony has improved a lot and I'm very happy about that. Antoine "Our education continues to be extremely structured and even rigid at times, but we realise that our children need it. Nathalie "The neurologist explained to me that I shouldn't replace the therapists. I have to prioritise my role as a mother by giving my son love, understanding and advice, but nothing more. He's taken a huge burden off my shoulders. Because, like all parents, I thought I could 'fix' all Maxime's problems. All it took was a lot of love and patience. Victoria Little by little, the parents regained their optimism and courage, and life got back to normal. They change the way they look at their children and the way they function, and rediscover a sense of parental competence appropriate to their role. "I love my two children and I'm happy to have had them. They encourage me to keep moving forward and to get on with life. Pascale "Our children are different, but we love them for who they are and how they are. We try to bring out the best in them. Iris "ADD/ADHD, whatever its 'degree', is a daily struggle, but in fact no more so than anything else, once it's accepted". Muriel "Sometimes when things are going really well and I get good comments about him from school, I cry with joy and he asks me why I'm crying. So I tell him it's because I'm happy and proud of him. Hélène Conclusion We have seen how difficult the journey can be for the parents of a child with ADD/ADHD, riddled with pitfalls, and we understand their exhaustion. Fortunately, at the end of this long journey, in most cases the outcome is a happy one, with a positive outcome. Because ADD/ADHD is also a source of qualities and a whole world of potential to be discovered, early diagnosis is essential. From the many testimonies we receive at Association TDA/H Belgique, we can see that when children are diagnosed and helped by multimodal treatment from an early age, ADD/ADHD has little or no effect on their self-esteem. The child continues to have confidence in himself and in those close to him. Family life remains calm and relations with school constructive. We are pleased to note that in Belgium there are more and more multidisciplinary centres capable of diagnosing and caring for people with ADHD. Many inspired and enthusiastic parents, teachers and therapists are putting their heart and soul into their work and are prepared to invest a great deal of effort in understanding and helping children with ADHD. They bring out the hidden strengths of children with ADHD. They help them to gain self-confidence. They bring out their many qualities. Together, by committing themselves wholeheartedly to the development process, they build the child's future. The young person is stimulated 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 recognised by all as a real handicap, a neurological dysfunction that penalises and compromises the future life of the person affected. People with ADD/ADHD are far more talented and gifted than they let on. They are full of creativity, spontaneity and enthusiasm. They are resilient. They always come back for more. They are inclined to generosity of spirit and are happy to help. They usually have a little something that makes them stand out, no matter what comes their way. It's important to remember that behind this sometimes unbearable child lies a sleeping Einstein. May you discover it.