One of the things I struggle with as a parent of a child with neurological issues is really grasping everything.  There are times when I feel that I have a handle on things and there are times that I worry about all kinds of issues.  Does he have other psychological and behavioral issues?  Is he suffering from clinical anxiety, does he have ODD, what is immaturity, bad behavior and what is executive functioning deficits?  Sometimes I think I might go mad with all of the questions running around my head!

One term that I have heard fairly often and frequently worry about is ODD, Oppositional Defiant Disorder.  Many parents have not heard about this disorder but it apparently is one of the most common psychiatric problems in children affecting around 5% of the child population.  It also affects a high percentage of children with ADHD … around 30 to 40% of those with ADHD also have ODD. In fact it is exceptionally rare for a child to only have ODD; ODD is commonly associated with ADHD and depression/anxiety.  Oh that lovely comorbidity thing again!!

So what is ODD?  One of the best descriptions I have heard of ODD is by Jim Chandler, MD, FRCPC.  (http://jamesdauntchandler.tripod.com/).  According to Chandler, “ODD is a psychiatric disorder that is really just the far end of the stubbornness spectrum.  The line that divides being just difficult and stubborn from ODD is a set of diagnostic criteria.”

The criteria for ODD are:

A pattern of negativistic, hostile and defiant behavior lasting at least six months during which four or more of the following are present:

• Often loses temper
• Often argues with adults
• Often actively defies or refuses to comply with adults’ requests or rules
• Often deliberately annoys people
• Often blames others for his or her mistakes or misbehavior
• Is often touchy or easily annoyed by others
• Is often angry and resentful
• Is often spiteful and vindictive

The disturbance in behavior causes clinically significant impairment in social, academic, or occupational functioning.

Now why do I worry about this so much and why am I confused?  I think any parent of child with ADHD probably struggles with getting their child to cooperate with homework, chores and the other necessities of life.  Our son often throws fits and refuses to cooperate.  This is pretty much a daily occurrence.  Are they outrageous, knock down fits?  No.  He occasionally has an outrageous fit but not often.  But why does he throw these everyday fits:

• Is it because some times he gets his way?
• Is it because of executive functioning deficits which cause a low threshold for frustration?
• Is it a side effect of the medication?
• Is it a transition issue?
• Is it because he is exhausted from school?
• Is it signs of ODD?

I think this is the most difficult part of our son’s neurological challenges – not knowing the answers to everyday occurrences.  Am I doing something wrong?  Am I doing something right?  What should I be doing?  And the internal battle of questions rages on and on in my head non-stop.

I decided to do some research into ODD for today’s blog post because it is an area I have been concerned about but have not really had the time to research.  What I found to be the key criteria for ODD is spitefulness and vindictiveness.  This coupled with a blaming others for his or her mistakes or misbehavior are key signs of ODD.  According to Chandler, “the destructiveness and disagreeableness are purposeful.  They like to see you get mad.”  It is this description that turned on the lightbulb for me.  Our son often refuses to cooperate but he is not spiteful or vindictive. He is “oppositional” mostly because he does not want to do what I am asking not because he wants to see me get mad.

To read Jim Chandler full pamphlet on Oppositional Defiant Disorder, please go to http://jamesdauntchandler.tripod.com/ODD_CD/oddcdpamphlet.pdf.  It is a straightforward description with examples that I found to be tremendously enlightening.  Most other sources of information that I found online stuck with the Diagnostic and Statistical Manual of Mental Disorders definition as an ongoing pattern of disobedient, hostile and defiant behavior toward authority figures which goes beyond the bounds of normal childhood behavior.  Most sources of information are very clinical with very few examples.

So I am happy to say that our son’s stubbornness does not seem to fit within the range of Oppositional Defiant Disorder.  Yeah!  Cross that off the list, for now (J).  So now I need to worry if it is a side effect of the medication ….. sigh.

One of the areas where I constantly struggle is helping our son find his areas of talents or what I like to call, his essence. Our children are like my husband and I. We are good at a lot of things but not outstanding at any one thing. We are good athletics, we enjoy music, we like books and politics, we enjoy giving back to the community and so forth. We are not the next Rembrandt, Tchaikovsky, Michael Jordan or Mother Teresa. Nothing is glaringly obvious.

Couple this with the fact that most of the time and effort with our son is currently focused on academics. He is absolutely exhausted when he comes home from school. He works hard, thank goodness, and cooperates with his teachers and, new this year, he actually LIKES school. I have so much to be thankful about. But some days when he gets home from school, he looks like he has been through a war.

We value play time and are mindful of balancing work with play time. But we have over an hour of homework each night and it is very difficult to fit everything in. He does play sports on Saturdays and seems to enjoy it but it is not clear to us that sports is his THING either.

Why do I worry about this so much? Our primary goal with our son with everything we are doing is to develop is self confidence and his self esteem. That is starting to develop academically because we are able to send him to a school when he can learn differently than the mainstream and be successful. I want him so much to experience success in something outside of school that he truly loves.

Getting him to try new things is not easy. He gets anxious and worried about new activities. Often when we start up a new sports season, he has trouble with the first few weeks of the activity – it is a transitioning issue.

Maybe this worry is more about me than him? I just want so badly for something to come easily to him that he truly truly loves … given that he has to work so hard in the other areas of his life.

So this blog post is not a Karen offering a suggestion blog post – it is one where I am reaching out to you for help. Do you have any suggestions or thoughts?

• How do we fit in the time for him to explore his interests?
• When is the right time to pursue drum lessons or karate or whatever else?
• Is maintaining a balance between play time and work time enough for laying the groundwork for future interests?
• Do I need to just chill out and believe that with self-confidence and academic “success”, he will figure it all out?

Would love to hear from you regarding how you enable the “essence” of your child to shine through all of the struggles!!!

MEET CHARLIE OUR GUINEA PIG

As many of you know, having a child with ADHD or working memory issues creates a challenge when trying to get them to take responsibility for multi-instruction tasks. We have had a difficult time getting our son to be independent and to take on responsibility. Some of this is probably our fault. He works so hard with his learning disabilities and ADD that we probably baby him too much otherwise. However, he was begging – BEGGING for a guinea pig. Even though we really did not have ANY desire to have another pet in the house (we have a Havanese dog and a Beta fish), we decided to use the opportunity to teach responsibility and to increase his independence.

At the pet store, we made a very hard deal with my son. He had to take responsibility for caring for the guinea pig with my help. If he did not, then we were going to give the guinea pig away and he was going to have to pay us back for the cost out of his allowance. We emphasized the deal several times and made him repeat it back to us several times before we even bought the guinea pig. So we bought the guinea pig and named him Charlie.
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According to discussions I have had with many doctors and therapists, no one should have to suffer through terrible side effects of ADHD medication. There are many medications to choose from and each one reacts differently to an individual’s body chemistry.

Putting your child on medication for ADHD or ADD is not an easy decision or one that should take lightly. I, however, have seen firsthand the power of what the medication can do for a child. It can have absolutely amazing results. I said on a recent post, “It’s almost like his brain is a lock and medicine is the key.” Unfortunately, however, medication is not effective for everyone. Some experts say that medication is not effective for some 20-30% of the ADHD population.

My family had many discussions with doctors and therapists before we decided to put our son on medication. Two critical pieces of advice that we were told over and over again are advice that I feel everyone considering medication for their child should know. First, each child responds individually to each medication and that it will probably take time and experimentation to find the right medication for your child. Secondly, it is absolutely not necessary to tolerate side effects which last for more than a few days.

There are many choices of ADHD medication both stimulant and non-stimulant based. If a child is having side effects from the medication which continue for more than a few days, consult your doctor and try another medication. Do not tolerate side effects – this is what we were told by both our doctor and the many therapists we spoke with which was about ten therapists – all extremely experienced with ADHD.
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In this video I share what we have immediately seen with medication for our son’s ADD. It is a testimonial for anyone consider medication for their child.

I wanted to provide you with a quick update on our journey with ADD. As of a couple of weeks ago, we put our son on Adderall on a very low dose. The results have been immediate! Although I agree that ADHD and ADD are overused terms in our society, ADHD truly is a neurological disorder that can respond quite well to medication.

We were lucky. Our son responded immediately to the first medication we put him on. We realize that as he grows, we will probably need to modify or switch medications. Each medication’s efficacy is relative to each individual’s body chemistry.

Our first day that we put him on medication, we immediately noticed that he was much more task oriented than he had ever been; he was highly communicative and his responses to others were much more empathetic. This may sound like a silly example but on the first day of medication, he peeled an entire cucumber by himself and presented it at the dinner table. He had never done anything like that before.
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BEFORE MEDICATION

AFTER MEDICATION

NEED I SAY ANYTHING MORE??

Girls Night Out: An Empowering Discussion about
Women and Aging

Girls Night Out
Thursday, October 1, 2009
6-9 pm
Fairmount Boathouse
#2 Boathouse Row
Kelly Drive
Philadelphia, PA 19130

Wesley Enhanced Living (WEL) will host Girls Night Out, a special evening of lively discussion, savory hors d’oeuvres, cocktails, wine tasting and chocolates on Philly’s renowned Boathouse Row.

As women, we have our plates full when it comes to aging – wrinkles and sagging (ugh!), planning for retirement, caring for aging parents and managing our health. Gather and network with women of all ages for an engaging panel and an empowering roundtable discussion on our relationship with aging.

A Girls Night Out panel discussion will feature leaders in healthcare policy and media. The panel will be emceed by Daily News/Philly.com Columnist Ronnie Polaneczky and will feature Renee Chenault-Fattah, NBC10 News Anchor; Anne Tumlinson, Senior Advisor, Avalere Health LLC and Nathalie Bartle, Professor, Department of Community Health & Prevention, Drexel University School of Public Health.

Ticket prices are $75 per gal. Free parking is available. Proceeds from Girls Night Out will benefit hundreds of Philadelphia seniors who call WEL at Evangelical Manor home.

Registration: Please contact Lisa Birton at 215-354-3193 or lbirton@wel.org or visit www.wel.org

Press: Please contact Holly Mantle (215-825-9633 or hmantle@levlane.com) or Caroline Pennartz (215-825-9644 or cpennartz@levlane.com) at LevLane

Wow, the response to last week’s post, What I Would Want a Mother of a Typical Needs Child to Know” (http://www.lipstickwisdom.com/2009/09/15/what-would-i-want-a-mother-of-a-typical-needs-child-to-know/), has been tremendous. I have seemingly been able to verbalize in my post what many mothers of special needs children feel in their daily life. Frustration with a lack of understanding and consideration is a common feeling among those of us with special needs children.

What, in my opinion, are the two most often cited sources of frustration and lack of understanding? I feel they are extended family and the school system. So I have been asking myself for days – how can I help to educate those who don’t know and don’t understand?
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Recently a question was posed on the web which asked, as a mother of a special needs child, what would you want a mother of a typical needs child to understand? As a mother to both a special needs child and a typical needs child, I found the question very difficult to answer.

Recently there was a discussion question put out on the web which asked what I would want a mother of a typical needs child to know about mothering a special needs child. As a mother to both a typical needs child and a special needs child, this question is really difficult to answer. Our son has both learning disabilities and ADD.

I have to say that I have written and re-written my answer probably a dozen of times. Finally, I think my answer comes down to what I feel is obvious. What mothers of typical needs children, family and friends need to understand is that we, families of special needs children, need understanding and consideration of our situation. Not unlike those with physically visible handicaps, those with invisible to the eye special needs require consideration, accommodations, respect and understanding. Invisible special needs can make daily situations no less daunting than for those with physical handicaps.
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Homework can be a frustrating time for any parent. This is especially true if your child has ADHD or learning disabilities. Here I share some times I have gained from first hand experience that make homework time a lot easier and enjoyable. Good luck!!

For many of us parents, homework time can be a very frustrating part of the day. This is especially true for those of us who have children with ADHD or learning disabilities. How can you work with your child to make homework time easier? I call it the 3 R’s — Routine, Reward and Relax!!

First, if you can, meet with your child’s teachers with you child at the start of the school year. Present a united front and lay out expectations for the year and explicitly offer advice and options if the child is having trouble with the material (age appropriately). Set up a system to regularly communicate with the teachers. We use a communication notebook that goes back and forth to school every day.

2. Make homework a daily routine – at the same time and the same place. Make sure the environment is comfortable and appropriate and aids concentration and productivity. We use our kitchen table and make sure that we have all the materials on hand that we will need. We also make sure that no one else is in the room!

3. Set up a short term reward system. Points, poker chips, pretend money, stickers or something immediate for that day such as TV time or game time are all a good basis for a reward system. Children with ADHD are highly motivated by short term rewards which could be daily or weekly. Develop a system that works best for you and your child.

I have found with my son that the more visual the reward system, the better it works. Post it somewhere on your refrigerator or anywhere where it is in plain view. It reminds your child of what they are working towards.

4. Break down the homework into smaller tasks with breaks in between. Plan with your child what is to be done and when break are to be taken. Plan together what the activities will be during the short, timed breaks. Even within subjects, break down the homework into smaller, more manageable pieces. For instance, for math homework, only show one column of problems at a time.

5. When and if you child reaches a frustration point, take a break but make the break explicit. “You seem like you are getting frustrated. Let’s go take a break for 5 minutes and then come back to the work refreshed.

6. When homework is finished, have your child organize it and put it away in their back pack so it is ready to go for the next day.

7. This is a good time, too, to plan for the next day. Lunch, snacks and outfits are all next-day tasks that can be taken care of so that the morning routine is easier.

8. As your child gets older and more independent, transition from homework helper to homework coach. A homework coach helps with planning for homework and projects, discussing what needs to be done and offering guidance on breaking the tasks down, and offering encouragement.

So remember, it is Routine, Reward and Relax!! I hope your nights of homework go smoothly. Until next time …. take care.

Karen