ADHD: The Invisible “Disability”

Terry Matlen, ACSW Health Professional ADHD expert, consultant, writer. Director: www.MomsWithADD.com ADHD has been part of my life since...oh, since I was born! But I... Send Message Subscribe: Terry Matlen, ACSW

Tuesday, February 10, 2009
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While reading Eileen Bailey's recent SharePost, "When People Stare", it felt like someone punched me square in the stomach... and on a number of different levels. Having a child with ADHD means you, as a parent, more than likely experienced very similar experiences as Eileen and her son. You've been ...

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Man on Journey
Tuesday, February 10, 2009 at 09:59 PM

Terry,

This is a comment along with a question. With all due respect, I don't understand why a parent or care giver can not control a child with ADHD. I have had ADHD for over 55 years and my parents taught me to behave as a child. My daughter has ADD and she was trained to behave. I have two nephews who also are ADHD and their parents have trained them to behave in public. Please, I am not trying to start an argument; I am truly trying to understand why parents can't control their children. Was I punished as a child if I misbehaved....you bet, and in the long term it was what was best for me.

When I was a child, if you misbehaved you were taught by positive reinforcement that misbehaving was unacceptable. I was spanked, stood in corners and sat in hallways during my grade school years and it didn't hurt my psyche or any one else's that I know that had ADHD in my age group. I am not advocating corporate punishment in schools today however, as a person who has ADHD, if this disorder had a name when I was a child, I would have milked the system to get away with all that I could.

I believe that my ADHD was just as severe as children's ADHD is today. A Sunday school teacher who had taught for over 30 years quit because of me, I am not proud of that fact today but as a child that was power. Do you understand what I mean? I pushed boundaries constantly and the more that I was able to get away with the farther I pushed. I am so glad that I didn't know that I had a disorder as I child because had I known, it would have given me more of an excuse or should I say license to misbehave.

My question is simply, why are parents apprehensive, or should I say unwilling to train their children?

I would love to hear other people's views that agree and also disagree with my analysis.

Thank You,

Tom

re: Untitled Comment
Marcie Lipsitt
Friday, February 13, 2009 at 07:45 PM

Tom,

I appreciate your post and question but for me the answer is simple. I don't believe children with AD/HD respond to the more typical parenting techniques and simply because their brains are built and wired far differently. The very nature and severity of impulsivity, distractability, risk-taking behavior and executive dysfunction will require as much training for the parents as the child with the disability. In addition, today's children face an ever-faster pace of life and existence in a mobile and internet-computer-based world and existence. There are far greater academic challenges and expectations and the social environment can present many more hurdles. There are a host of growing websites and books that discuss the behavioral techniques for children with AD/HD and other brain disorders that can present varying degrees of emotional, social, behavioral, neurocognitive and academic challenges. You might visit www.lostatschool.org and www.schoolbehavior.com ...just several that offer great information.

Regards,

Marcie Lipsitt

ADHD: The Invisible "Disability"
Kate
Thursday, February 12, 2009 at 06:56 AM

  
Good Morning,

I would like to make just a few comments (if possible) in response to both Tom and Terry Matien after reading Terry's article. I was diagnosed with ADHD as an adult although looking back I can now recognized behaviors that I dismissed as character or personality flaws. I believe that a diagnosis of ADHD does not make excuses for behavior, but helps to explain. My attitude toward behaviors in children that others find challenging, irritating, or disruptive has changed over the years. I also used to think--why doesn't that parent do something about that child? Don't they have any control? Then when my daughter was paddled in school for not paying attention in class (4th grade), I was outraged and promptly sent a letter to the school to let them know how humiliated my daughter was over that incident. She still remembers and talks about it from time to time and she is now 36 years old. BTY after talking to her teacher I had some diagnostic testing done and found that she had what they called "absence seizures" and was on medication for several years until her brain developed (if that is the correct description) and she had a series of totally normal EEGs.

We also had the experience with my grandson who from toddler on up would occasionally have intense "temper tantrums" that could not be controlled--you don't reason with a 2 year old. The only thing that worked was to sit and hold him with a very firm, but loving hug until the episode subsided. Again, we thought--this is just how he is--it wasn't until he was hospitalized in 6th grade for out of control rages (and too big to hold in your lap!) that we discovered that he most likely had childhood onset bipolar disorder.

I believe that discipline and structure are positive ways to help a child, but that punishment, especially spanking, for behaviors that may be out of their ability to control, can only do more harm to someone who may already be very worried about why they do some of the things they do.

In my own case, I'd like to hear more on the invisibility for adults with ADHD. Although I've begun using a variety of strategies I'm still often late for class and other events or activities. For years, unknown to me, my family would give me an earlier time for an event so that I might actually be on time.

Tom's comment about milking the system bothered me because I have been working with the dean of students for accommodations for my ADHD--such as allowing me additional time in an environment with less distractions for exams, permission to record lectures, and additional time to complete writing assignments when I can document that I've at least made some progress with the work. At first he was reluctant, wondering whether those accommodations would give me an advantage over other students (perhaps he thought I might be milking the system) but I hope he understands now that those few things only help me in the challenge and struggle to stay on task and complete projects that is many times so hard to do.

Again, I apologize---every time I respond to something like this, I tend to make it more than it needs to be.

Thanks for reading,

Kate

re: ADHD: The Invisible "Disability"
Man on Journey
Thursday, February 12, 2009 at 01:01 PM

Thank you Kate for responding to what I had written and you're very insightful observations. I also remember in vivid detail how humiliated I was in first grade when the teacher pulled my pants down and spanked me in class. I am glad I had clean underwear on LOL. I agree with it wasn't right what the teacher did to me but I will say this, it worked in this respect I never again in my life, did again what I had done to get that spanking.

I wish that we as a society could have a healthy balance in how we discipline or not discipline children. What I mean is that the pendulum swung from a period in time where a child could be and often was abused by some teachers and then went home and was physically abused again by a parent to a time where children are allowed to use four letter words towards their teachers and the child goes home and dares the parent to try and punish them or they will call protective services. Now the pendulum is swinging in a manner where children are not allowed to be children any longer and the court system wants to treat children as adults. It is sad that we as a society can't reach a census and adopt a fair, balanced and practical set of guide lines for what is proper behavior.

I too Kate have asked professors to allow me a little slack and I have asked the teachers of my ADD daughter to work with her. What I meant by my remark regarding milking the system is that in my case, I would have never tried again to be on time, or have my assignment completed or even wait for my turn to talk. I would have blamed all by misbehavior on my "ADHD." For me and I can speak only for myself, had I been told that I had a disability as a child and that I couldn't help it because I didn't act like the other 95% of the population......I would have never tried to conform but would have been twice the hellion that I was.

I truly believe that as a child or now as an adult, I am ultimately responsible for my actions and should suffer the consequences for my misbehavior. I am time challenged, LOL, caring about time, let alone being on time is a struggle. However, it is ultimately my responsibility to be on time. I moved all my clocks and watches ahead twenty minutes playing mind games with myself. Guess what? I still would be twenty minutes late. Finally, I just told myself enough is enough..... "Tom you will be on time!" I have now trained myself to be early. I don't want people to view me as different. I honestly believe that with the correct type and dose of medication, that we with ADHD can have an advantage over non ADHD people. Please read Eileen Bailey's artcle on "The Positive Side of ADHD", Friday, June 15, 2007.

This is such a great format. A place where people can have open dialogue with each other and can appreciate each others views. I'll end this with a quote from Eileen Bailey, "So go ahead, enjoy your life, enjoy your ADHD and live life to it's fullest." I love that.

Tom

just a moms view
Jean
Thursday, February 12, 2009 at 12:13 PM

i have two with ADHD and i tend to treat them just like my other two children.....i think all kids need disaplin and structure and i feel a lot of kids dont get one or the other or both these days....i see so many parents letting electronic "babysit" kids....i really try to limit the time my kids are "babysat" with tv, computer, game systems ect. but i feel these thing are part of life so they all get their share of them.....but all in all my kids are just like "normal" kids, the only different is my one still takes med and from time to time struggles in school because of noise in classroom.....but on the other hand there are other "hidden" disiablities that poeple live with everyday.....like my other daughter, she has CVID ( an immune disorder) and no one know it unless they are told.....but she struggles everyday....IV treatment evey 3 weeks and side effect that in clude bad headaces causes her to struggle to keep up in school with all the missed days....so she is put in special ed classes and has to tell people almost every day why she is in such classes as she is a bright young girl and and looks "normal".....i think alot of the time she get tired of explaning her condition to people, we live in a small community and it is a rare thing she has so no one know what she is talking about......and she will have to live with this all her life.....as do many ADHD kids......i was thankful when my son no longer needed meds for his ADHD.......but as every parent know ya love your kids no matter what and keep them safe the best way we know how.......so just keep an open mind when your out in public and say a pray for all our children to grow healthy and strong with our love and giudance.....Jean

Great post!
Merely Me
Thursday, February 12, 2009 at 08:23 PM

I hear you about invisible disabilities. I have Multiple Sclerosis and my youngest son has autism. And we are quite a pair when we go out and about. By the looks of us...you might not ever be able to tell anything is wrong. People do not get to see my fatigue, muscle weakness, and blurry vision. And people look at my beautiful son and wonder why he behaves as he does at times (squealing, jumping up and down like a frog among other behaviors).

I have a much greater empathy when I see a child having troubles...especially in publics places. There is sometimes a lot more going on than meets the eye. We have had the most compassion from children, other parents, etc. But it seems the most stares or glares we get is from the older population who...in their day...children who had disabilities or disorders were kept more out of the public eye. This is just my guess.

I had the unfortunate experience one day in a supermarket when my son was singing...and this older woman began yelling, "WHY ISN'T HE IN AN INSTITUTION!" He wasn't doing anything bad...he was just singing. But I suppose in her day...kids were locked up for being...different.

I think what helps is to educate when you can. But for some folk...they are truly resistant.

Thank you for writing such an insightful and compassionate post.

To Terry & To Tom...
MessyMargie
Monday, February 16, 2009 at 01:06 PM

First, I'd just like to share with Terry how this reminds me of a story where a woman, let's say (because I cannot remember the gender of this person for sure - I think it may have been Bob Perks), gets on a bus and a man and his four(?) children are sitting and the children are all over the place, making quite a racket. The woman first reacts in disgust as to how the man just sits there and allows the children to behave in such a manner in public. After awhile they begin to chat and she finds out that this family is on its way home from the hospital where the wife/mother has just died. The moral of the biblical phrase "judge not, lest ye be judged" becomes more clear to me every day and in so also helps me to be more humble. I just wish this message could spread and take root throughout our society and I'm beginning to think about reaching out to the educational system to begin teaching this to our kids in some way through Social Studies.

And to Tom, being over 50, you and your family probably never heard of ADHD when you were a child, since I believe it only was actually recognized and given a name by psychologists somewhere after the 70's. I know, because no one knew what to do with me or how to handle me as a child, except with strict disciplinary authority tactics (it helped that my parents sent me to a Catholic school where some of the nuns were so mean, but considered so "holy" that they could get away with physical abuse. Although there were really only a couple of horribly nasty ones, we were naturally scared of them because they held great power). But I could write a book on the effects it had on me growing up with this and not knowing why I was so different, put down, made fun of and bullied, and how this awful affliction played out in my adult life, in my relationships and jobs. It was such a relief to finally know that I was not alone in this world and my weirdness had a name when my daughter was diagnosed with it back in the early 90's. But I still HATE living with it since I still haven't found a medication or method of dealing with it. Thank God for Social Security Disability, or I might be living under a bridge somewhere by now.