Typical Emotions and Stages of Acceptance You May Experience
A personal note from Heidi Bernhardt, the author of these pages:
As a mom of three grown boys with ADHD and after speaking with thousands of parents over the past 24 years through the ADRN, CADDAC and CADDRA, I felt that I had some experience around the emotions that parents experience. Does this make me an expert? Of course not, but I felt that this was something that was important to talk about and often not dealt with. Parenting a child with ADHD can often be a lonely experience. As I look back on the years of my involvement with the various groups, I clearly remember that most of the support and understanding I received was from the other members of those very groups. In times of extreme stress realizing that there were others struggling with the same confusing emotions and unanswered questions seemed to ease the load enough to go on. At that time, over 24 years ago now, education on ADHD and support for families was very difficult to come by. It is my hope that this document will in some small way help some parents out there who are not able to link up with a support group in their area.
Raising children with ADHD can be an emotional roller coaster. We keep questioning ourselves about what we may have done wrong and what we can we do differently in the future. Are we being too demanding in light of their difficulties or are we letting them off the hook too easily? All the while everyone else seems to know exactly what we should be doing. Neighbours, family members, and even total strangers are sure they can do it better, endlessly offering unsolicited advice: you probably allow your child to eat too much sugar; let her watch too much TV or play too many computer games; your child needs more discipline and structure; but no wait, you’re just too hard on him, he’s just being a boy. The worst, perhaps, is when others do not acknowledge a problem at all and tell you that it must just be your parenting style, because your child is just fine when you are not there.
We know that the stress of parenting an ADHD child can rip a family apart. Parents often blame each other’s parenting styles before and after the diagnosis. There can be great discord over accepting the diagnosis and deciding on treatment options. Statistically, chances of divorce increase when ADHD occurs within a family. This, of course, is not the child’s fault, but the added stress on a family can be tremendous. When additional co-existing disorders such as, Anxiety, Depression, Tourette Syndrome, Learning Disabilities and especially Opposition Defiant Disorder (ODD) are added, the anxiety level only increases.
Added to this is the distinct possibility that one or both of the parents are struggling with ADHD themselves. We know that ADHD is highly hereditary. Children with ADHD are two to eight times more likely to have a parent with ADHD and three to five times more likely to have a sibling with ADHD. Often the spouse and siblings without ADHD are called upon to carry the brunt of the load for organizing and running the family. This can lead to resentment over time. Many of the behaviours exhibited by both the child and adult with ADHD can easily be misinterpreted as uncaring and unloving. Education about ADHD is the best way to combat this, but hurt feelings are often unavoidable, at least some of the time.
After the Diagnosis: feelings or stages that you may expect to go through
Finding the resources that you need to have your child properly assessed is difficult, but what some parents find surprising, is the many feelings they themselves experience during the process and after their child is diagnosed.
Disbelief and Denial
“Not my child” is a common mantra among parents of newly diagnosed children. This is one of the stages where the stigma of ADHD can impact parents to a great degree. The media has been known to feature sensationalized horror stories about children with ADHD, and parents rightfully have a difficult time viewing their child in this light. These children are not undisciplined monsters as sometimes portrayed by the media. These are kids with strengths and weaknesses like any other kids. Frequently when a child with multiple diagnoses, family problems, emotional problems, and ADHD is portrayed in the media, it is the ADHD that is focused on. Situations can be complicated and families can be highly dysfunctional outside of the existing ADHD. Unfortunately, the media usually does not differentiate between ADHD and ADHD in amongst some extremely complex situations and events. This can result in a skewed view of what ADHD really is.
The parent who identifies closely with his or her child, may be the parent who is in total denial that there is anything wrong. Fathers have been known to say “He’s a chip off the old block. I was just the same when I was a child and look how well I turned out.” Defensiveness may occur, if this parent decides to interpret the diagnosis as a personal attack on his own character and doesn’t remain focused on the child’s situation. When parents remain stuck in the phase of denial, it does a great disservice to the child.
But, a parent who has ADHD themselves can also be a strong ally and role model, offering a level of understanding that others cannot. Adults who have worked through their feelings, have come to an understanding about their own ADHD, and have used the positive attributes of ADHD to their advantage, are a role model to all with ADHD.
The first step is to make sure that your child has received a thorough assessment. This will help you and other family members have confidence in the diagnosis and help ensure that you have a correct diagnosis. Do not feel uncomfortable about questioning the doctor until you feel satisfied that everything necessary has been done. Then, get on with it. Inform yourself about ADHD as much as you possibly can. The more you learn about ADHD the more support you can offer your child and family. Parents also find this a good way of testing the accuracy of the diagnosis. No one knows your child better than you do and if the diagnosis is a fit, the more you read and hear about ADHD, the more ‘light bulb’ moments you should have about your child’s behaviour.
After hearing the diagnosis, some parents may feel an overwhelming sense of disappointment. They may feel that any dreams and aspirations they have had for their child have been shredded. Living through our children is not uncommon, but in this case it may become a significant problem, especially if we punish our child, even indirectly, for not living up to our dreams. All children need to find their own strengths in order to succeed, but this is especially true for children with ADHD. Children who are struggling with so much do not need the added guilt of not living up to their parents’ dreams. But the joy that is experienced when watching our children fulfill their own dreams can be wonderful.
After receiving the diagnosis parents may feel a great deal of anger towards a number of sources: fate; the doctor or other medical professionals who may have misdiagnosed the child earlier; the teacher who was convinced that your child was simply a behaviour problem; your spouse or other family members who did not recognize or admit to a problem; and perhaps the system for the lack of available services. As parents, and especially as mothers, we are also very good at blaming ourselves for not recognizing the problem earlier. Anger may be helpful if we use it to fight for our children, becoming effective advocates within the education and medical systems, and seeking out all available resources to help them, but holding onto anger indefinitely can be terribly destructive.
Fear of the unknown and of what the future holds for your child is common for all parents, but is so much easier to dwell on when you are the parent of a child with any type of disorder or disability. Listening to the statistics on ADHD can drive numbing fear into a parent’s heart. But we are now diagnosing and treating more children at an earlier age, which can only contribute to better outcomes. It is difficult to provide effective help if the true nature of the problem is unknown. There are many successful adults out there who were never diagnosed with ADHD, but clearly have it. So just imagine how much better your child’s chances are if he or she is diagnosed and receives the help needed.
Looking for the Magic Bullet and Bargaining
Often parents feel the need to try on other diagnoses that seem less threatening. They may also try unconventional treatments for ADHD, in the hopes of finding that “magic bullet” that will make all of this go away. Unfortunately there are a great many entrepreneurs making a great deal of money on alternative treatments that have no basis in scientific research. Many of these treatments are very expensive and have no scientific proof that they actually work.
When reviewing any treatment for ADHD ask these questions. Is this person or web site trying to sell me a product? Does this treatment have numerous, large scale, double blind, peer reviewed, studies to back up any claims that are being made? In other words: has the study been duplicated many times with the same results; was the method designed to eliminate a placebo effect; did the study occur with a large number of children or adults, hundreds; has it been reviewed by ADHD experts and have the results been published in a recognized medical journal?
If you would like to try an alternative treatment for your child, do all the research that you can on possible side effects but in addition always speak with your doctor to confirm that there are no contraindications with any treatment your child may be currently taking.
As parents and especially mothers, we beat ourselves up about our children a great deal. Remember, a late diagnosis is so much better than no diagnosis and hindsight is always perfect. If your child was diagnosed late in life, or diagnosed but not treated earlier, it is never too late to do something about it.
Probably the most heart breaking situation to deal with, is that of a child who is in denial that anything is wrong with him/her and is sure that everyone other than he/she is the problem. It is very common for those with ADHD to have difficulty recognizing and analyzing their own behaviours. This usually is not as much of a problem in younger children, especially if both parents are in agreement with the diagnosis and the treatment, but is more commonly a problem in adolescence. Unfortunately the one requirement in all this is a child who is willing to use the help that is available. It is very difficult for parents to watch their child with ADHD be his/her own worst enemy. It is very difficult for parents to watch their child with ADHD be his/her own worst enemy.
Anything that you can get your child to read or view on ADHD may be helpful. Finding a role model for your child, an adolescent or adult who is successfully living with ADHD is good first step. Unfortunately, many a parent will tell you that stubbornness seems to be an inherent trait of ADHD and sometimes time and learning the hard way are the only things that seem to change these kid’s minds.
There will be much to learn and many decisions that you will need to make about your child’s ADHD. There are many conflicting opinions out there about ADHD. The media tends to sensationalize rather than provide solid medical information. Some Internet sites are promoting a product or ideology not backed by medical scientific research.
Deciding on a treatment option can be confusing, but if you do your homework it becomes less so. Do as much research as you can, but make sure that the information that you are receiving comes from a reputable source. Reliable information needs to be based on accurate scientific research, whether you receive it from the Internet, books, presenters, or by word of mouth. Be a critical thinker and apply the questions listed above when reviewing treatment options. But also, remember that your medical professional is a good source for information and feedback on any information that you may come across.
Relief may seem like an unusual feeling, but it can be a very common one. If as a parent you have known for some time that there is a problem and your child has been struggling, not knowing where and what to concentrate your efforts on can be frustrating. For some children it can take years of seeing doctors and enduring many misdiagnoses to actually obtain the correct one. Children who have ADHD without hyperactivity (often girls), or children who are bright, can often be overlooked. ADHD inattentive presentation (without hyperactivity and impulsivity), or what used to be known as ADD, can frequently present with anxiety and/or depression. Unfortunately if the underlying ADHD is not treated, the chances of success are not encouraging. If you were unable to find help in receiving an assessment and diagnosis in the past and now feel that you are on the right track, relief can be a very legitimate feeling. Older children, adolescents and adults frequently express a feeling of relief at the diagnosis; many have felt that something was wrong their whole lives and finally feel they have been handed the missing piece of the puzzle.