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A lifetime of misdiagnoses


When I was three months old, I caught measles from my older siblings When I got into kindergarten, my teacher told my parents that she suspected I had a hearing problem.  I was tested and I was found to have a moderate hearing loss caused by nerve deafness.  They didn’t have hearing aides for kids then.  I was placed in the front row in all of my classes and attended lip reading classes with a boy my age.  I’m guessing this teacher came to my school once a week, in elementary school. Throughout school, it was hard to pay attention.  I found myself daydreaming a lot.  It got worse in junior high & high school.  I was often the butt of jokes, not being able to understand what was being said, coming up with the wrong answer, etc.  I didn’t really fit in.  I had trouble doing homework & taking tests.  I could not remember things & didn’t do well in history, math & some other classes.  I was very happy to be out of school, & going to college was out of the question.  My parents were not in favor of going to college, anyway. 

Having a hearing impairment caused me emotional and self-esteem problems, made worse by having no support or understanding.  What I didn’t know or understand, was, not only was I having hearing problems, I had comprehension and concentration problems.  As hard as I tried to study, information wasn’t sticking in my brain.  This was very embarrassing, but I didn’t know what to do.  Mentoring was never suggested.  I just didn’t know “what was wrong with me.”  I knew I couldn’t hear “normally” but I didn’t know what “normal” was, never having experienced it.  And somehow, other problems I was having, like not remembering, being impulsive & depressed, didn’t really go along with having a hearing impairment, but it was all I knew as an excuse.  Subconsciously, I must have known, because I kept asking myself what was wrong with me?  I spent most of my life trying to solve a mystery.

Although I tried to get help by seeing therapists, they only diagnosed me with depression and I was given antidepressants which I took for many years.  I was never given any tests which might point to something that was wrong in my brain.  “Happy Classes” didn’t do anything for me.  I always lacked a sense of motivation, except when I was forced to get things done, or when I was extremely interested in something.

Many memories of things in the past would completely escape me, which my husband found very hard to comprehend.  Disorganization was always a problem as well.  Just another thing to try to comprehend.  Things started to come to light when Dr. Gabe Mate was being interviewed on T.V. about his newly published book, “Scattered.”  He describes some of the same problems I had.  I immediately became interested and read many books on the subject.  One in particular I could really identify with, “Women & ADD” by Sari Solden.

I took an online test for ADD and it was positive.  I realize that, in the past, only boys supposedly had ADD.  But “Women & ADD” was written in 2005 and “You Mean I’m Not Lazy or Stupid?” was written in 1993.  There may be others written earlier.  So, professionals knew about women having ADD as least since 1993.  That’s 21 years ago!  A big delay for people suffering from an unknown disease!  Dr. Russell Barkley has been working on this subject for 25 years.

Replies

I feel fir you and have been in your shoes. Please read the explosive child. I think if you had a better understanding of why your son is this way you could find some compassion and empathy any and open the door to helping him rather than being frustrated. It worked for me. I was feeling just like you and after a few months of readjusting my thought process things are better. Not always great but better.

Posted by kimbader on Jan 22, 2014 at 1:20pm

My son acted like this last year, he is now 7 1/2. We realized he was having side effects from his ADHD medicine. Took him off everything, slowly started figuring out the right fit. He is now on Adderall immediate release takes one in the morning and one in the afternoon. This so far has been the best suitable ADHD medicine. I found all the others increased my sons mood swings, depression, and suppression of his appetiate. Please consider trying a new adhd medicine it just might be that instead of him as he doesn’t really know how to communicate what the current medicine is doing to him. Also, taking away his ipad and xbox will only make him more depressed and upset at the entire family. First figure out if it’s something he can’t control like the side effects from his medicine. I hope he finds help as I still feel bad that I didn’t realize until a few months after that my son was not being bad he was just having major side effects from his ADHD medicine. Now it’s been amazing!!! I wish you the same!

Posted by livingwith-adhd&add;-infamily on Jan 22, 2014 at 2:23pm

(2 answers above are from a different question last month.)  Do make yourself familiar with Hoagies gifted website - lots of resources there.  I’m guessing that should be your primary community, rather than ADHD (not that he doesn’t have that, too, but sometimes not - there’s plenty of misdiagnosis of ADHD in GT kids).
Advocate for a computer for him at school - try dry erase boards if writing on paper bothers him.  Do lots of research.  I’ve been homeschooling my 12 yr. old for 2 yrs. after our lovely small private school went to seed, my younger is at a charter school.  Consider a full psych eval with IQ test to get more info on what his needs are. Look for a pediatrician who is not prejudiced toward homeschooling - you should have clear support for either choice (don’t know where you are, but in Michigan there are homeschool co-ops and playgroups galore).  Good luck.

Posted by Katherine85 on Feb 26, 2014 at 11:32pm

Mamabear,
Your post inspired me to send a note of encouragement.
Bear sounds like such a loving guy! What a trooper.Figuring out what school services are best for our kids is a daunting and ever changing task. There is a lot of info about obtaining a 504 plan for your son on the Wright’s Law website. Also, investigate your state and (new) school district’s special education website. I found that knowledge was the best weapon against being trapped in a fearful mode about what was possible for my son. It may seem overwhelming now but take it one step at a time, because it will take TIME. I would also add that, based on my experience, medication did not “kill off” the special qualities that make him who he is. Careful observation when trying new meds will quickly tell you if that particular drug is going to work for your son. We found the second med we tried was the best fit for our boy. Of course this was done with close monitoring and great communication with our pediatrician. Lastly, sometimes SPD and ADHD present similar symptoms and it can be hard to determine which behavior is caused by which disorder. ADHD medication will not relieve the sensory seeking behaviors that look like impulsivity or non-compliance. Katherine 85 has posted some great thoughts. Take care, good luck and keep investigating.

Posted by cowboy on Feb 26, 2014 at 11:37pm

Hi Mamabear, You are starting out on a journey.  It may not be the one you envisioned.  There will be wonderful and frustrating times ahead.  You will learn a lot.  Things will change and you will learn more.  My son is 21.  He was on Straterra twice and didn’t like it.  He told us that the best decision we ever made for him was to put him in the gifted program.  Being around other very intelligent kids was so very helpful for him.  But we didn’t get him there until he was in 5th grade.  Shortly after that we had him tested for learning disabilities which he had some.  That helped with knowing what to put into the 504.  Common accommodations are sensory breaks when he needs them, extra time if needed, sitting close to the teacher, testing individually, or in a small group.  Think about what makes him function better and put those in.  The accommodations can be changed if needed, or added to if you find something else he needs.

If the public school can not provide what he needs, there is nothing wrong with providing it yourself.  Sometimes the wrong atmosphere can be more harmful than helpful.

Three books I recommend are:  5 Levels of Gifted: School Issues and Educational Options Paperback by Deborah Ruf,

Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: ADHD, Bipolar, Ocd, Asperger’s, Depression, and Other Disorders Paperback by James T. Webb,

Bright Not Broken: Gifted Kids, ADHD, and Autism Hardcover by Diane M. Kennedy

You know your son the best.  Go with what you feel is right.  Hopefully you and your husband can come to agreement.  You can always change if something doesn’t work out with either public school or homeschooling.  You’re doing the right thing with trying to learn all you can about your son and how he feels, thinks and learns.  It can be overwhelming.  Sometimes you just have to be OK with not knowing.  Sometimes the decision is not clear.  Just take the next step.  If it’s in the wrong direction, change direction.  Love your son.  Encourage him whenever you can.  Stay healthy and keep your relationship with your husband strong.  I send you a big hug.  My last piece of advice is to enjoy the journey, good parts and frustrating parts.  It really does go by fast.

Posted by whizinc on Feb 27, 2014 at 5:42am

Feeling your confusion and frustration.  If things are too overwhelming dealing with the school district it may be best to home school next year and do play dates with your home school kids and/or join a support group in your area for adhd kids/gifted kids.  They will understand you and your son and give you encouragement and support.  Having a child like this is a big stain on a marriage.  Think of lowering the stress level for the entire family first whatever decision that may be, then try and focus on the next solution.  God Bless you, hand in there : )

Posted by NaturalMom on Feb 27, 2014 at 5:10pm

Hi I thought you were talking about my daughter when I read your post with the exception of my daughter is into sports . I have no great advice to give to you as I am going through the exact same thing as you and your daughter are. They are the same age, she was diagnosed in 3rd grade. She has been on most medications and nothing seems to work. She has been to behavior specialists and nothing is helping. Her attitude is awful, she is always mad , we can’t even have a normal conversation with her.
She has a 504 plan and in the next couple weeks she is being tested thru the school for LD. She is also failing 3 classes and it doesn’t seem to worry her. She hates studying, she does really bad on tests, she doesn’t turn in homework even if it is done, and if it is, her handwriting is so bad the teachers can barely read it.
She is just starting to get help at school during her study hall but I’m afraid it may be a little to late. We have had multiple meeting with her teachers but as much as they know about her situation they are not that accommodating. It’s all so frustrating.
My husband and daughter are the ones that butt heads and I end up being the mediator .Its put a strain on us because he gets so mad he gives in or he just is totally inconsistent. But I have to say at times I am too!
  I guess what I am trying to say if nothing else you are not alone. We are going thru the same thing. Hang in there!

Posted by Mom2Abbey on Mar 12, 2014 at 2:02am

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