Our New Normal: Parenting Our Child with Tourette Syndrome, ADHD, OCD,ODD

retro clock Neurologically Gifted

Transitions

I have an weekday mid-afternoon alarm.  It goes off everyday signalling the end of school.  It is the sound of my son’s blood curdling shriek the moment he is “home”.  Home to Nate is the place in his world that he is free of scrutiny of others and he can let his guard down.  The garage door opens, then shuts and it is as if the whole outside world disappears and he is transported magically to “home.”

Click, (the garage door), screech, “F**k” (in the loudest voice you can imagine), bang, bang, “F**k”, screech, bang then “Mom?  Hi!

This is my alarm.  My signal that it is my turn.  Nate’s turn is over and he has likely done an outstanding job.  I no longer worry that his screaming and swearing will be heard by the neighbours.  I no longer worry about the noise or the coprolalia.

He comes in to to the kitchen.  “Hi Mom.”  His backpack bumps the counter and he says, “F**k”, screeches and throws his backpack into the corner.  He screeches again.  Then, “Sorry Mom”.

At this point I make a decision about whether I should ask him how his day was or if he has homework or if I should give him a hug and a kiss.  I really want to do all of these things but I play it by ear.

I had a rough day.”  He tells me.  He struggles to get his lunch bag out of his knapsack and ends up smashing it down on the counter in frustration at this simple task. Screech then a colossal “AHHHHHH!”, screech.

I wait for him to finish throwing his agenda and homework on the counter and move away from this aggravating task.  I go in for the hug and kiss.  I gently ask if the “situation” at school ended ok.

Nate generously offers a kiss.  The hug he endures because he knows he should.  I remove the force of my hug immediately after giving it to let him direct the duration of contact.  He tells me in 10 words or less what “I had a rough day” means.  He has usually sorted it out at school with the excellent support of his team. He throws the next test at me.  “Can I have a pop?” or “Can we go out for dinner?” or “Can we get a pony?”  Whatever the question is, it doesn’t matter.  He needs to ask me a question that he is sure I will have to say no to.  He puts on his puppy dog eyes and stares at me with the look that if he could only have one wish ever this is what it would be.

I say, “No”.  I don’t launch into an explanation of why I am saying no or ask questions or otherwise engage in the question.  “Where would we keep a pony?” isn’t going to help.  Just “No” and I move on.

 

Nate is now irate.  He goes about his business yelling, “Why?” and “But…” and “B**ch” and “A**hole” and the screeching and banging ramps up to full force.

Depending on his day he will continue for a period of time attempting to engage me in the fight, banging, shrieking and throwing out profanities.

I wait.

Sorry, Mom.”

Okay.”

Mom!  I’m sorry!

Okay Nate.”

This may sound like a good ending but it is often not the end but the beginning.  If Nate doesn’t get the “feels just right” apology acceptance from me he can quickly ramp up to being irate again.  We start all over.  Only the second time he is feeling even more sorry and distressed, and the “feels just right” apology acceptance from me is even more elusive.  At some point I am able to convince him that I heard his apology, I accept it and I love him unconditionally forever and ever.

Then one more drill.  “Can I have a snack?

Sure Nate.

Thanks, Mom.”

Nate grabs his computer and enters his Minecraft world.  I go about making him and bringing him a snack with a smile.  The alarm has been reset.

Every day is difficult but really, it is so much better than it was -for both of us.  I would have never thought that I could see so many positives from this situation, nor be able to brag about all the successes that occur during this short period of time, day after day.

If you missed them, here are some of the successes:

 

  • Nathan is back in regular school, with support, staying a full day and managing his school world successfully almost every day!
  • I understand that Nathan has been self regulating all day long and when he gets home it will almost always fall apart at least for a short time.  I get it and it is ok.
  • Nathan acknowledges and apologizes for all of his verbal or physical threats almost immediately.  He has learned his actions and words can have an impact on others, (me in this case) and he appropriately takes responsibility.
  • Nathan recognizes that events that happen at school need to be resolved and he does resolve most of them before the end of the day.  Again, this is with adult support at school but he is successful at it!
  • Nathan is actively doing his after school must do jobs.  Book bag in its place, contents unpacked, no nagging or reminders required.  That is responsible.
  • Nathan hugs me because he knows it is important to me.  He knows it is how you show love and affection.  He is looking outside himself and to the welfare of others.
  • Nate and I manage an extremely disruptive daily transition and we both know we are loved.

Mom and Son Neurologically GiftedI would have never predicted that this would be our new normal after school routine or that this new normal would actually feel good!

 

The Birthday Cake: Lessons from Oppositional Defiant Disorder, ODD

The Birthday Cake Lessons from Oppositional Defiant Disorder NeurologicallyGifted.com

Nathan doesn’t eat birthday cake.

Stop sign-NOHe can’t.  His brain won’t let him.  There is a great big stop sign between him and his birthday cake, parked right between the blowing out the candles and the sweetness of the first bite.  The stop sign says “NO!”  Then a caption underneath says, “This message is brought to you by YOUR ODD.”

Its not hard to pick out a child with Oppositional Defiant Disorder, ODD.  Just ask “ Do you want to go to the park, honey?” or “Do you want some ice-cream?”

ODD Neurologically Gifted“NO!”

“You sure?”

“NOOO!”

“I have your favourite flavour.”

“NOOOO!  I HATE YOU!”

If you think that is bad -try to convince him that he really, really does want ice-cream.  You may start a full blown rage and certainly ruin your day and his day.  What would be even worse?  You end up feeling a need to punish him, send him to his room, ground him from his friends and take away his I-pod.  Yikes!  Things go from bad to worse.  Everyone ends up exhausted and steam-rolled.

And its not like Nathan doesn’t like cake.

(Okay.  He doesn’t like Chocolate cake and that’s a bit weird.)  He likes cake.  He could eat an entire cake all by himself – just not his Birthday cake.

Year after year, Nathan refused his birthday cake.  Chocolate cake, (I know), angel food cake, ice cream cake, any kind of cake…  It didn’t matter.  He loved his birthday and fully participated and listened graciously to our singing “Happy Birthday”, making his wish, posing for photos and blowing out the candles.  And then, “NO!”  to cake.

Sometimes, I would feel ripped off.  Why the heck can’t we just have a happy, normal celebration?  “Let’s eat cake!”  “I got it just for you!” “Just enjoy the damn thing.”  There was something unsatisfying about not ending up with icing and smiles on all our faces.  I admit it – I am pretty sensitive.  Being yelled at by my son hurts my feelings.  Especially if I am really trying to be nice!

Sometimes I felt bad for him.  His challenges are pretty huge and it’s NOT just the cake.  But…his disorder preventing him from being able to participate fully in a normal, happy celebration year after year with his family.  The poor kid!  He likes cake and he can’t even eat his own cake!  Knowing the expectation that “everyone loves birthday cake”, causes his ODD to contradict the expectation.  He can’t help it.  He needs to say “No” to it.  That’s how ODD works:  if he is expected to do something, say something, or even like something (like birthday cake), his internal stop sign pops up and forces him to become non-compliant.

And yes, sometimes it would go from bad to worse.  Someone would naively try to convince him,  “Oh, come on Nathan, you have to havesome of your birthday cake.”  Then his ODD would take over.  Harsh words would go flying, voices would be raised, and feelings would be hurt.  He is already fired up, of course – it’s a party after all.  Not a good way to end a birthday party.

What we have learned from Oppositional Defiant Disorder

  • detour Neurologically GiftedOppositional Defiant Disorder responses are deeply entrenched by repetition.  To circumvent this roadblock, try going around or get off and take another route!  This is one of the general rules in our home.  We know that attempting to crash right through Nathan’s “NO”/Stop sign will cause injuries.  And, who wants to flatten their child?
  • Ignore the “No!”  The automatic “NO!” is exactly that – automatic.  It really doesn’t mean anything.  If we wait it out, the automatic “NO!” may subside, then disappear.
  • Give your child time between their automatic  “NO! and your reaction to it.  Nathan often responds with “NO!” and then physically follows through with a “Sure, Okay!”  The pause before my reaction was the key to that realization.  Over time, the delay between his automatic “No” and “Sure, Okay” became shorter.  Now he often says “No” while he complies with our requests.  It can be funny at times.
  • Pick your battles.  Listen to your child and respect their choices.  Sometimes, “NO!” is really a “NO!” (like the chocolate cake), and not just ODD, (like the “NO!” birthday cake stop sign).  Don’t make a “NO!” into a “You’ll do it because I said so!”
  • Teach your child about their Oppositional Defiant Disorder and what your observations are.  Self insight will help your child immensely to take power over their automatic ODD responses.  We talk about it all the time and encourage Nathan to fight back against his ODD tendencies.
  • We don’t really know when Nathan’s birthday cake stop sign got placed or cemented there but we all know it is there, so we work around it.  This year Nate had a slice of pie.  I made cupcakes and we had two kinds of pie.  He picked lemon meringue.  Candles and everything!

Rage!!!

Rage/Neurologicallygifted.com

As an adult who has Tourette Syndrome and associated disorders, I have an intimate understanding of rage through experience. I understand the frustration of shouldering the burden of getting through every day filled with tremendous and constant challenges due to my disorders and associated symptoms. These demands not only test one’s patience continually, they test one’s ability to be still, to perform routine tasks and even to relax. If unable to calm themselves during times of stress, the sufferer may “boil over” emotionally, and release their frustration through angry outbursts.

(See our post Mental Health Challenges in Neurological Disorders for more about stress – coming soon)

People with neurochemical disorders including Tourette Syndrome and ADHD, often have a low frustration tolerance. They are usually predisposed to poor self-control in the manner of impulsivity and rage. This is especially true in children with neurological disorders. Children are just learning the coping mechanisms and strategies to assist them with daily struggles due to their disorders as well as managing the common unpredictable stress life brings. Dealing with the day to day of managing their symptoms, (which are always waxing and waning), drains away their mental energy to cope with anything else. They can easily become overburdened with stress. Add to this, an under equipped skill set to calm themselves, and outbursts of rage can occur at even the smallest challenges.

At times, the release of this frustration goes beyond the person’s control and the combined behaviours that occur are termed rage. Specific biochemical and hormonal changes occur within the body and brain including the “flight or fight” response. Rational thought, perception and reasoning stop functioning. Learned strategies for calming are no longer useful. The person will often say or do things they would not have ever thought of doing. Often, the person may have no memory or have an altered memory of events that occur during a rage. Shame and depression may also follow rages as the person wonders how they could have acted so poorly and so out of control. It is important for the individual to recognize that the actions that occur during a rage are beyond their control. Feelings of shame post rage will accumulate without this understanding and make the individual more prone to rage. It is also important to understand that despite the involuntary nature of rages, there is help, there are strategies and people manage them effectively. But how?

Referring to my owrage neurologicallygifted.comn experiences with rage and TS+, I have always believed that an adult is ultimately able to control their rage. Developing the ability to do so requires maturity and the ability to take personal inventory (asking yourself, “How am I doing right now? How are people reacting to what I am saying?”). Children can eventually learn to take control, but it requires a great deal of training and understanding. I believed that with coping mechanisms for stress, strategies for relaxation, self awareness and education, rage could be controlled.

Unfortunately it is not quite that simple.

My belief that rage could be controlled was seriously challenged a number of years ago when I was asked to counsel an 11 year old boy who was having up to 20 rages a day at school and home. The child was unable to control himself in any manner. At home, he lived with mom and grandmother. The two women supported each other as they were both of poor health, and endured the constant challenge of rage and violence in their home. The child was quickly growing and was bigger and heavier than they were. His behaviour was unmanageable in both the school and home setting.

Fortunately, I already had a trusting relationship established with this child. When I met with him to counsel him, we reviewed the problem behaviours at home. As his aggression and violent outbursts were becoming increasingly more dangerous, I warned the child that if he continued to be unsafe, he would be taken from his home and would not be able to live with his family. The next two weeks saw a positive change. After that however, he started to re-engage in violent behaviours towards his mother and grandmother. These behaviours continued to become more severe until finally, he attempted to push his grandmother down the stairs. He was immediately removed from his home and spent the next nine months in a residential facility. When he was released and returned home, he was able to control his rage.

So, this eventual success story reinforced my understanding of rage, based on my personal experiences and observations. People who display rage when frustrated are unable to restrain themselves without proper motivation to prevent the rage from occurring in the first place. They will continue to express their frustration with rage until they have “crossed the line”. They will push the limits of others’ tolerance until they surpass those limits. They will “go too far”. That’s what rage is. They will only learn to prevent themselves from rage after they have gone “too far” and suffered the consequences. Dozens of times over the past 20 plus years, I have seen examples that support my observation and belief. The story I have shared is extreme, and yet the boy I described did learn to control himself after he was kept in custody. It has also been the case in my home, although our “limit” wasn’t as serious. Fortunately for us, things didn’t get too far out of control. They easily could have.

As heartbreaking and scary times had been through my stepson Nathan’s rages, an underlying question directed our responses and our final goal.

The question – How can we motivate ourselves, (or our children), to pre-empt the “going to far” and gain control over rage before it happens?

pressuregauge neurologicallygifted.com

Clearly rage triggers a biochemical change in a person which then pre-empts choice, reasoning, rational thinking and self control. On the flip side there are deliberate choices, strategies and coping skills that can be utilized to prevent the onset of a rage. Finding the right timing and the motivation to employ learned skills is an extreme mental challenge requiring practice and tremendous support.

See Part 2, Part 3 and Part 4 of Neurologically Gifted’s Series on Rage