Coping with ADHD Diagnosis

As a parent or guardian, when your child was first diagnosed with ADD/ADHD, what were some of the first thoughts that came to mind and also, at the time your child was first diagnosed, what help, service or information would you have benefited most from?

By Brandi Valentine

That is the question that I asked of my readers in a recent Weekly ADDition. I'm not a professional writer but I tried to compile as much of it as I could so that I could share it with you.

As I read through the responses, the same words kept re-appearing. RELIEF, HOPE, SADNESS, FRUSTRATION AND IGNORANCE. Those who have a child diagnosed as ADD/ADHD have experienced them all.

Relief in knowing that there was a reason for their childs behavior and relief in knowing that the reason was a medical one, and not a result of something the parents had control over or were responsible for. It wasn't their parenting skills, they were not bad parents, nor was it the fault of a mother who felt that they were somehow responsible or had done something during pregnancy that caused their child. to be this way. It also gave many parents relief by knowing that they were not alone. For some, it even gave them insight as to how they behaved when they were a child.

Here are just a few examples of what readers had to say.

" Thank Goodness we found the problem. I was feeling very hopeless, as if my child was unruly by choice"

" Relief that there was a name for the way that my 16 year old son was acting and that he was not the only experiencing this."

" Relief, that there maybe help for him and those who have to live with him and guilt because my eldest child inherited dyslexia from me, and now my youngest had inherited ADHD from me."

" When my son was first diagnosed with ADHD it was both a relief and a disappointment. Being my first child, it was a relief to hear that there was something wrong, a reason why he didn't learn like other children and disappointment for not having a "normal" child."

"When my son was first diagnosed with ADHD, the first feeling was relief. Until that point, most people in our lives were convinced that all of our son's problems could be attributed to ineffective parenting skills."

" I honestly thought it was my fault and that I could have changed the outcome if only I had done something".

Very few comments were made about how hard or how easy it was to get a diagnosis for their child but again, most of the readers seemed to agree on another issue and that was the lack of support they received once their child had been diagnosed. Most parents were told their child was suffering with ADD/ADHD and sent home with a prescription without any clues as to what their rights were, where to find help and support and what to expect. Parents had questions and they wanted answers. Questions such as, Will he grow out of it? Is this forever? What have we done wrong? How do we separate the truths from the fictions when it comes to information? How will this affect him in his life long learning process? Where to we go for support?

"When our child was first diagnosed, the most help would have been that someone, anyone, would have sat down with us and not assumed we knew what ADD/ADHD was. Helping to educate us with books, videos, discipline models, help in building positive behavior skills, setting up parenting classes for parents with children with disabilities, openly talking about modifications for the classroom that were available and an explanation of the state and federal laws that apply to children with ADD. The school assumed that the pediatrician would do it and the pediatrician assumed that the school would do it. A working knowledge of the disorder, what it is, what it is not. How to effectively advocate for themselves, helping the child develop coping skills in the educational environment, acknowledging the difficulties with organization from the start and help to work through those difficulties instead of making the child feel as a failure for not "getting that paper in on time" or losing it completely."

"What service, help or information would I have benefited from? a better question would be what wouldn't I have benefited from, none of which I got?. From a full and comprehensive explanation of what the condition is, how it can progress, what is available in terms of various and alternative treatments including not only medication but behavior modification etc., the very real need for structure with a child with ADD the desperate need for rebuilding and maintaining self esteem and far from least, names of organizations and educational institutions which would be of value not only to my child but to myself as a parent. Instead I walked out of the evaluation process as ignorant of the problem as when I had come in, with nothing more than a "diagnosis" of a syndrome of which I had little or no understanding. In addition, because my son's condition was presented as a mild case, I was led to believe that I could just go about life without making any major changes, now, three years later, sadly I know that is not true and my son has lost many precious advantages, while I am faced with all the research I should have been provided or been encouraged to seek then which might have prevented much of the educational and social damage which has since occurred."

" Believe it or not, when our son was not much more than a newborn, our pediatrician alerted us to the notion that our baby might one day be labeled "hyperactive" which was the buzzword 15 years ago. He cautioned us not to allow him to be labeled, but the labels came very quickly. I was a young mom (with ADD myself) and had 3 young children- I assumed a lot of blame and guilt for this child's behavior, even though I had 2 other reasonably well-behaved children. My husband and I are only now getting the true full picture of ADD. We had been led to believe that after puberty the affects of ADD would lessen. The very opposite has been the case."

" All I wanted was for someone to explain to me all the reactions and byproducts as far as behavior that are attributable to this condition in addition to the hyperactivity and lack of attention span and other behaviors that are common in ADD children."

" My son was diagnosed at age 4. There has been little to no support anywhere. His Doctor and Teachers were willing to put him on meds but there was knowledge of the laws to help children and families. Most professionals , doctors, teachers can counselors know how to diagnose, but little about helping. It wasn't until now, that I was fully informed about my son's rights under section 504 and it has been a frustrating battle that we have come to believe is worthless to fight. He is in eighth grade now and looking back, I should have refused medicating my child until there were substantial accommodations made in the classroom. I'm still fighting the reluctance to help him, seems the only accommodations school is ready to make is preferential seating."

What service or help would you have benefited from most after your child was diagnosed? Here is how parents responded.

"It would have been helpful if the teachers and evaluation team had some information on hand for me to read. They told me my son has ADHD and an impulse problem, that he should be on medication, but never gave me anything to read to names of books, doctors or anywhere to turn."

Here is how parents responded.

"It would have been helpful if the teachers and evaluation team had some information on hand for me to read. They told me my son has ADHD and an impulse problem, that he should be on medication, but never gave me anything to read to names of books, doctors or anywhere to turn."

" The help/service I would have benefited from most was where credible help is. We actually tried 4 doctors/therapists before we found someone who wanted to help us and not "get rich". Also knowing other parents/families of ADD/ADHD would have been great. I've really been lonely because most of friends can't cope with someone like my son."

"I would have benefited by having a "map" of all the things that needed to be done so that he could succeed at school. Instead I was met with disbelief by his teachers. I had to fight the school to get them to accommodate his disability through the 504 Act, and in the meantime he lost a full year of school."

"I think the most important things is EDUCATION about ADHD and SUPPORT from other who have been there and done that. It has always amazed me that hurdles that have been crossed with schools, social workers, court systems and medical professionals tend to be put right back up for the next family/child to jump over. I think advocates would be a great help."

"The services that would have been most helpful (and still would be) include a school district that is educated on HOW to deal with ADHD."

"If health care professionals helped by giving parents names of support groups, medication management professionals as well as alternatives and information on coping."

"What would I benefit most from? Faster information on how to handle ADD. I was left high and dry for a while. What do I do to discipline her? If she's not doing these things on purpose what do I do? Also, how do you tell your 8 year old she has ADD.

"Additional KNOWN information would have been helpful. The search for "reasons" for ADHD began to include food, environment, distressed labor, smoking, drinking, chemicals and all sorts of bizarre combinations such as shampoos etc?it was a Ferris wheel of selections. Continued input on how to appropriately handle these children and finally information on "new research".

This is just a fraction of what parents had to offer and I apologize if I didn't mention everyone's ideas in this letter.

In closing, I thinks it's safe to say that even today, almost 5 years later, support and informational resources are still not as readily available to parents as they should be. I remember that 4 years ago, if my mother had not been sitting next to a retired school teacher on a bus trip to Reno, and engaged in conversation with her, that I still would not have known that a child has rights within the educational system.

Ultimately, I'd like to prepare a page that tells parents where to look and what questions to ask and how to find out what their rights are. As parents, guardians, step parents and grandparents of these children, I'd like to ask that you send me any thoughts you have on this subject so that I can put together a page to help others. In the meantime, I hope that reading what other parents had to say, that it will give others some idea what to expect and what to do.

As parents who have been there and done that, I think we have a lot to offer those who are just finding out that their child is ADD. While many of us are still learning, I think we all still have information and experiences that others will find valuable.

If you'd like to share any advice or ideas, please send them to me.