http://henleysheroes.blogspot.com

Karen H
I am a loving wife and mother, devoted to the care of my sick husband, while raising 2 children. My husband is 44 and was diagnosed at the age of 36. In April, he will begin his 8th year with EOAD. He remains at home with us, and has been enrolled in Hospice since September. I am a strong believer in raising awareness of EOAD…We need to be the voices for those who can no longer speak. My hope is that this Blog reaches as many people as possible to help create the awareness and funds needed for research. My faith has kept me strong throughout this journey and it’s something I rely on completely.

Karen writes about the day to day trials and triumphs with her family at her husband who has had Early Onset Alzheimer’s for 8 years. Karen shares with the reader her decisions in the care of her husband and thinking that has gone into this care.

Here is a sample post from “Follow You, Follow Me, Our Journey”
http://henleysheroes.blogspot.com/2009/04/nursing-homes.html

Tuesday, April 28, 2009
Nursing Homes??
 

My mom goes once a month to a geriatric psychologist. I can only imagine that once you hit your 70’s, you may need someone to talk to, because you know your future is shorter than most people. I would be happy for my mom if she discussed her thoughts and her feelings, but everytime she goes, she discusses Mike, the kids and I. Yes, she is concerned for us, but when she comes back from her appointment, she relates what Dr. B said. “Karen, Dr. B, said you should do this, why don’t you try this, Mike should really be in a hospital/in patient hospice, he’s not getting the care he needs at home, it’s too much for your daughter and her children…………….” HOW DARE HE???? He’s never seen Mike nor us. Every specialist that knows Mike, that has treated Mike all these years has CLEARLY said to us that if Mike had been in a nursing home, he would not be here today. The level of personalized, loving care he gets at home – is unprecedented.

Why are some people, even medical professionals so quick to THROW people away to nursing homes??? Is that what YOU would want for yourself??? For some people, a nursing home is the only option and I can sympathize with that agonizing decision – but for others, it’s not necessary. They just want the easy way out. Yes, it’s the easy way out. I have the right to say this because I LIVE IT.

Caring for Mike is EXTREMELY time consuming, strenuous, emotional etc etc etc…. but when he goes to sleep at night, comfortable in his own bed and I can lay next to him, NOTHING can take that moment away from us. It’s a shame that others don’t want to make sacrifices for the sake of those they love. The look of contentment, peace and love on Mike’s face when he closes his eyes to go to sleep, is all that I need to get me through another day.

Anxiety issues as well as depression and learning problems tend to coexist with ADHD. Some children, however, are incorrectly diagnosed with ADHD when in fact they have an anxiety disorder. Other children have both symptoms of anxiety disorder and ADHD but the medications for one can actually cause more harm than good.

Any treatment option for a child with ADHD needs to look at the child holistically and make sure that all factors are taken into account and monitored.

 
Anxiety issues as well as depression and learning problems tend to coexist with ADHD. Recent studies have shown that one-fourth of children with ADHD exhibit some symptoms of an anxiety disorder whereas between 5 and 15% of children in the general population are diagnosed with an anxiety disorder.

Symptoms of anxiety include:
1. Anxious or fearful feelings without an apparent cause
2. Chronic exaggerated worry
3. Problems with concentration or distractibility
4. Insomnia

And there are physical symptoms as well such as headaches and stomach aches.

The challenge with all of this is that some children have an anxiety disorder and it mimics the signs of ADHD but they only have the anxiety disorder. Other children have anxiety issues and ADHD but the medication prescribed for ADHD can exacerbate the anxiety issues. In this case, the anxiety must somehow be treated before the ADHD.

I fully believe that there is a biological link to many of the disorders among the spectrum of ADHD, anxiety, depression, Asperger’s, etc. but the diagnosis and treatment is COMPLICATED.

I do believe our son has some anxiety issues. He is afraid of the dark and he is afraid to sleep alone. In addition, any time we are changing the routine by either taking a weekend trip or starting a new sports season or trying out a new activity, he gets highly highly anxious about it.

However, he does not exhibit the symptoms of an anxiety disorder that I just talked about. He is not anxious or fearful without an apparent cause; he does not exhibit chronic exaggerated worry; he does not have insomnia and he does not show the physical symptoms of anxiety. He does have problems with concentration and distractibility

Let me share some examples. We were planning for our annual vacation. We had been talking about it for a while. Our son had been expressing that he was going to miss home, that he was going to miss the dog and constantly asking questions about where we were going, how long we were going to be gone for, what we were going to do, where we were going to sleep, where and what we were going to eat and so forth. We realize that changes and transitions are difficult for him so we do discuss these questions and many more pretty intensely for about a week before heading off. Well the night before leaving .. late in the night because we were still packing, he got hysterical about going away. Big tears and sobs and crying that he did not want to go – he was absolutely hysterical.

This happens too with a new activity. For instance, he played basketball for the first time with a township team this winter. For the first several weeks, we could not get him out on the basketball floor to play and learn. So we kept going week after week, hanging out with him on the sidelines, hoping that over time he would be ready to jump in. This did not happen. So we ended up inviting his best friend to come along so that they could do it together. Problem solved. They jumped in together and had a ball.

So why am I rambling about his anxieties? He definitely exhibits many more anxieties than a typical child his age. However, when I look at the “checklist” for anxiety disorders, he does not seem to fit there well either.

As you know, we have received a recent diagnosis of ADHD inattentive for our son but as advocates we need to make sure that the doctors and therapists that we work with are fully aware of his anxiety issues and are addressing the child holistically. In addition, should we go down the path of medication, we need to be especially vigilant about observing the effect of the medication on not only the ADHD but also his anxieties. There is no definitive tests for either ADHD or anxiety so the analysis and treatment moving forward for our son will continue to be a case of observation, experimentation and advocating.

Join me next time when I share with you some of my strategies for addressing his anxiety issues. As always, thank you for watching and until next time.

Karen

http://slurpinglife.typepad.com/

If you want help in keeping things in perspective on your life and challenges, read Melody’s blog – she is truly amazing!

Melody

A mom by birth and adoption shares – through photography, writing and humor – parenting boys who live with autism, ADHD, cerebral palsy, fetal alcohol spectrum disorder and more. Reminding everyone that children with special needs are kids.

Why I Blog…

My special purpose sons take me to places daily in mind and heart that I would have never known existed without them. In sharing photos and a few words from our daily life, I encourage you to look at your life with humor, hope and the reality that you do what you can do when you can do it.

A sample posting:

http://slurpinglife.typepad.com/slurping_life/2009/05/love-thursday-special.html

Love Thursday ~ Special

I look at this child of mine and see so much more than you.

I see his pain. His intense struggles. His once physically abused and broken body.

His kind, forgiving spirit. His acceptance of difference.

His heart that loves so, so deeply.

Friday morning at an unbelievably early hour our family, including Grandma, will head to our State’s summer Special Olympics.

And…

Wil will be swimming the 25m and 50m freestyle events.

It is his first time competing in anything other than daily scuffles with his brothers.

He’s a bit nervous.

And way psyched.

This beautiful soul…our miracle child…has overcome so much. He has struggled, persisted and accomplished things the experts said would not be possible.

We are so proud of him.

We are so blessed by him.

We love him beyond measure.

I assure you that all love and GO WIL! you send this way will be enthusiastically received and deeply appreciated by a special eleven year old boy.

http://canmombecalm.blogspot.com

Jennifer Choi has two special needs kids. Her blog posts are written in a compelling manner that shares a tremendous amount of information and wisdom. Her writing is thoughtful, information, emotional yet not dominated by emotion, if you know what I mean. She is a really terrific resource! Check her out!

Jennifer Choi

About Me

Last year, while on maternity leave with my second baby, my oldest son, Logan, then 3, went from being very withdrawn in preschool to very aggressive and was about to be expelled! After getting him evaluated, I soon found myself quitting my job as a publicist and a few months later, I realized I had not one but two children with special needs with issues like hyperactivity, impulsivity, difficulty feeding, speech delays, some oppositional behavior and sensory processing disorder. I promised myself I would tackle this problem like the way I did my job. I would map out my plan and beat it down. I immersed myself in learning things like SPD, ADHD, and gluten/casein free diets. Last year, I checked myself in the emergency room with chest pains and difficulty breathing. It took awhile to figure it out but finally I was diagnosed: panic episodes. I wasn’t beating anything. It was beating me. Well, no more. I want to be happy. I want my kids to get better. I want my marriage to be strong. I know I can do this. I just have to be calm and take it one step at a time.

SAMPLE BLOG POST:

The original post can be found at http://canmombecalm.blogspot.com/2009/06/pr-backlash-of-supreme-court-victory.html

PR Backlash of the Supreme Court “Victory”

When I was in my twenties, I was very involved with my identity as a Korean American woman. It was a really big deal to me. I worked for a women’s organization that was run by Korean American women and for a couple of years, we set up conferences that discussed issues that affected us as Asians and as women.

In many ways, being an Asian American woman was a double blow. As Asians, we dealt with a plethora of stereotypes: complacent nerds, Harvard bound math geniuses, sleazy Chinatown gangsters, and perpetual foreigners despite being raised or even born in the U.S. (Do you know how many times I’ve been asked where I’m from and after I say “New York,” the person says, “No, where are you really from?”)

As Asian American women, our stereotype paints us as super-submissive rugs to step on and/or exotic sex kittens. We are marginalized by mainstream American society and we are also marginalized by our male Asian counterparts. There is a reason that you see so many Asian women married to non-Asian men. I know some men have fetishes for Asian women but there is another side to it. Some Asian women sometimes have a hard time dealing with the double standards of Asian men and so they naturally fall in love with men who are not unfair and selfish. (BTW, not all Asian American men are like this- many are really great to their wives.)

I bring this up today because I read something disturbing after doing the happy dance upon hearing the recent Supreme court ruling that says that parents can ask for tuition reimbursement for a private special education school even if they never had their child in a public special education setting. Jen Laviano, a special education lawyer wrote an insightful blog post lamenting how the evening news covered the story in a way that focused more on the costs implicated in the ruling. If you want to hear some dissenting lay opinions, read the comments on Sue Shellenbarger’s blog in the Wall Street Journal. Words like “retard,” “reform school,” “hood,” and “flipping burgers at McDonald’s” were used by commenters. It wasn’t pretty.

Any special needs parent knows that the cost spent now will mean a lot less spent later. It could also result in a great contribution to society. They also know that a child placed in an inappropriate educational setting will negatively impact the child’s classmates’ opportunity to learn as well. But here’s the problem: only the parents of special needs families know this. Possibly included in this circle are the teachers who teach these classes and parents of the special needs child’s classmates who are aware that the child is negatively impacting their own child’s education. If we are lucky, the teacher and the other parents will recognize the child has special needs. If we aren’t, the child and his parents will be painted with numerous assumptions which would be hurtful, not to mention counter-productive.
Read the rest of this entry »

In this continuing series, I share the struggles and insights that I have gained from working with my amazing son with ADHD. In this segment, I discuss ADHD and temper tantrums and offer practical advice on how to handle your child while in the midst of a tantrum. Thanks for watching!!

 
Sorry it has been a while since I made my last video log. It has been a crazy time with graduations and end of school year activities!!

Continuing on with Segment 2 of Our ADHD Journey, we have been actively evaluating schools, reviewing our IEP and looking for an ADHD therapist.

The topic I would like to discuss today is ADHD and tantrums. Although my son has the inattentive form of ADHD, his ADHD does affect his anxiety levels and his impulse control relative to emotional reactions. We have figured out through trial and error what works for our son when he spirals into an emotional temper tantrum. Recently, I was reading several blogs online and our approach was confirmed by an adult who has ADHD and was able to explain why our approach works effectively.

It works like this. When our son gets himself all worked up about something and is “throwing a tantrum” (he does not kick and scream wildly but it is definitely a tantrum), we get him very physically active. Usually we do this by PLAYFULLY picking him up and spinning him around or tossing him in the air (yes, he is still small) or chasing him around – again playfully. The calm soothing voice or rubbing his back approach does not work at all. The reason why this works was explained by the adult with ADHD in this way. A person with ADHD in a temper tantrum has a brain that is totally racing at that point. Physical activity or loud music helps to calm the brain down.

One emotional aspect of ADHD is that little issues can be perceived as big issues because of the way the ADHD brain works. That coupled with a weakened impulse control results in these tantrums. This is not simply the case of the child behaving badly.

We have also started to name the behavior when it happens as a first step toward self realization that his behavior is not appropriate. We hope this is a first step towards self-control in the future. By giving the behavior a name, like the temper monster, we are helping to externalize the behavior so he can recognize it when it happens.

Believe me, I know that it can be physically and emotionally exhausting working with a child with ADHD. But when tantrums occur, we have found it the be most helpful to

1. Step Back
2. Get Silly
3. Jiggle the Tantrum Out Playfully.

Good luck! Thanks for watching and until next time!!

Karen

This article can be found at
http://www.mnsu.edu/comdis/kuster4/part88.html

Thank you to CC of
http://ifonlyihadsuperpowers.blogspot.com
for pointing this one out. (CC’s original post can be found here http://ifonlyihadsuperpowers.blogspot.com/2009/06/therapy-thursday-listening-activities.html)

Do You Hear What I Hear? – Listening Activities

By Judith Maginnis Kuster

“There is only one rule to become a good talker– learn how to listen,” said an unknown author. Although speech-language pathologists and audiologists may suggest additional “rules,” both professions agree that listening is an important skill. Speech-language and hearing specialists often incorporate listening activities with individuals who have speech sound differences or disorders and those who have hearing impairment, including those with cochlear implants.

Listening activities are also used to help individuals recovering from aphasia to improve auditory memory, teach individuals with autism spectrum disorders, help clients with attention or central processing disorders, and serving many other clients. The following resources offer freely available activities featuring this important component of treatment.

Listening for Environmental Sounds

The FindSounds search engine (www.findsounds.com/types.html) locates online sounds made by birds, animals, natural events, household items, musical instruments, holiday events, people, tools, vehicles, and more.

Bananas in Pyjamas (www.abc.net.au/children/bananas/games/animal_sounds/default.htm) offers a timed animal-sound matching/concentration activity with easy, hard, or very hard examples.

Animal Sounds (www.perunakellari.fi/animalsounds/animal-e.html) invites the user to type the name of the animal heard from a word bank of 21 animals.
Read the rest of this entry »

http://www.adhdandmore.blogspot.com

ADHD and More is a really informative blog that contains “Essays, articles, news releases, my story as a parent of an ADHD child and more…”. It is an interesting mixture of information on treatments, ADHD facts of interest and personal insights. The blog’s author is Liz Swanson.

Liz Swanson

This former Valley Girl now lives in Pennsylvania. I love gardening, sewing, crafts, music, my cats and chocolate but most of all my hubby and daughter. I am a stay-at-home mom but have an “on call” job as a professional organizer. I volunteer with Art Goes to School, a nonprofit that visits the local elementary schools to teach art history and appreciation. My blogs are about things in my life, my family’s life or friends’ lives – cats, gardening, ADHD, hobby income like ebay and craigslist, mental health issues, recipes and (unfortunately) cancer.

Here is a sample post:

http://adhdandmore.blogspot.com/2008/10/our-stories.html#links

13 October 2008
MY DAUGHTER’S STORY

When my daughter finished kindergarten her teacher told me she was “young” and worried that she might have trouble getting tasks completed in 1st grade, even eating lunch in time. As the years went on my daughter continued to be “young” and did indeed have difficulty meeting deadlines and time limits with her assignments.

In 4th grade her school started handing out letter grades and report cards. I helped her study for tests and quite honestly she sometimes seemed like an airhead. I’d tell her a fact, then immediately ask her a question to which the fact was the answer and she’d guess something else. It was frustrating.

In 5th grade she confused this information with that information. Most of the facts were in her head, but they were a jumbled mess, not organized at all.

She’s been tested by several experts and now sees a psychologist twice a month (for anxiety) and psychiatrist (anxiety & ADD) once a month. And she’s on Adderall- I noticed a difference right away with the meds at home. Most of the forgetful stuff is gone and she’s on top of things.

Last year, in 5th grade she received mostly D’s on her report card and yet she scored high on state tests in 3rd, 4th and 5th grade, not to mention the school’s counselor telling me my daughter’s IQ was in the 130’s.

This year is starting out with A’s and B’s. I had fights and frustrations with the 4th grade teacher (didn’t want to make sure homework was written down or books were brought home) and with the 5th grade teacher (everything under the sun he refused. he even told the school counselor no on her requests! ) My fingers are crossed that with alot of hard work, maturity and med’s, my daughter succeeds in school from now on.

http://blog.adhd-bipolar-and-beyond.com

In her blog, Kari, talks about the daily struggles and joys of raising a son with ADHD.

Here is a sample post:
http://blog.adhd-bipolar-and-beyond.com/2009/04/sleep.html

Wednesday, April 29, 2009
SLEEP

So in the process of trying all these supplements and hair mineral analysis, we were able to get my son off of his Melatonin to help him sleep. However……although he now will go to sleep, most nights not until between 10 and 11pm. This is an hour or more AFTER we put him to bed.

He is up and down many times. Stalling, playing games, driving me nuts! And needless to say, not helping our marital relationship in any way!

UGH!

http://adhd-treatment-options.blogspot.com

This Blog is fantastic for looking at the results of studies that have been conducted regarding ADHD, its causes and its various treatment options. The author summarizes the studies and explains them (for the most part) in layman terms. There is a wide variety of studies and treatment options that are presented and discussed at this blog including genes, medications, herbal supplements, amino acid treatments as well as ADHD and bedwetting, auditory processing disorders and the economics of ADHD. The author of the blog does not disclose their background or any other personal information.
 
Here is the Welcome Message from the Blog Author

Welcome to my Blog on ADHD treatment options. It is my goal to present you will information and unbiased insight into the various ADD and ADHD treatment options that are out there. The information presented in this blog has been collected from a number of published studies in the field of attention deficit disorders and the effectiveness of a number of ADHD treatment options. I will be reporting on a number of journal articles and attempt to give an earnest evaluation of their results, citing relevant sources when necessary. My main goal is to present to you the most comprehensive, accurate and honest evaluations of the many ADHD treatment options available to you or your loved ones. I welcome your comments and encourage you to subscribe to my blog. You will receive constantly-updated information as my personal research in the field continues.

Bill of Rights for Children with ADD

HELP ME TO FOCUS …
Please teach me through my sense of touch.
I need “hands-on” and body movement.

I NEED TO KNOW WHAT COMES NEXT …
Please give me a structured environment where
there is a dependable routine. Give me an
advance warning if there will be changes.

WAIT FOR ME, I’M STILL THINKING …
Please allow me to go at my own pace.
If I’m rushed, I get confused and upset.

I’M STUCK, I CAN’T DO IT! …
Please offer me options for problem solving.
If the road is blocked, I need to know the detours.

IS IT RIGHT? I NEED TO KNOW NOW …
Please give me rich and immediate feedback
on how I’m doing.

I DIDN’T KNOW I WASN’T IN MY SEAT! …
Please remind me to stop, think, and act.

AM I ALMOST DONE? …
Please give me short work periods with short-term goals.

WHAT? …
Please don’t say “I already told you that.”
Tell me again, in different words.
Give me a signal. Draw me a symbol.

I KNOW IT’S ALL WRONG, ISN’T IT? …
Please give me praise for partial success.
Reward me for self-improvement, not just for perfection.

BUT WHY DO I ALWAYS GET YELLED AT? …
Please catch me doing something right and
praise me for the specific positive behavior.
Remind me–and yourself–about my good points
when I’m having a bad day.

{Author Unknown}