Category Archives: Uncategorized

Aug 11

The ADHD Double Tango

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Coco and me in a 5th grade talent show

My ADHD daughter, Coco, was thirteen years-old and dealing with her first year of middle school, and my ADHD son Harry was twenty and still living at home and the whole family including my non-ADHD wife Margaret and our way-too-intuitive dog were all still living in Honolulu, scraping by in paradise, when I wrote this post for my ADHD Dad blog at ADDitudemag.com.

A lot has changed in three years, we live in Georgia now, Harry has moved out, and my mother-in-law has moved in.  But the ADHD Tango between my daughter and I, goes on – the steps are more complex now that she’s in high school, but the challenge of the dance remains.

It’s last week, Friday afternoon – I’m on a deadline, trying desperately to finish an article that I’ve procrastinated even starting for days, and now it’s down to the wire. My wife and twenty-year-old son are at work and I’m home alone hunched over the computer calling myself stupidlazystupidstupidstupid when my thirteen-year-old daughter, Coco, comes slamming home from school. She grabs a banana from the kitchen, walks into my office, and with a big sigh plops down in the chair across the desk from me.

Continue reading →

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Jul 06

Without Hope

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A close friend of mine has an ETL teen in great need. They’ve lost their health insurance because their family business is struggling in this economy and, the teen is without medication and counseling. Now, his behavior is plummeting into not only causing family havoc but also other areas of the community.

Even when he was receiving medication and counseling, he struggled at home and his mother was frequently called to come and get him at school because his behavior was out of control making the his current school placement come into question. If this is the right placement for this child, why isn’t he having success?

Behavior and emotional disruptions occurred to the point the mother was unable to fulfill her responsibilities at the family business causing more family turmoil. This put additional stress on the father as he attempts to fulfill the daily needs of the business on his own. His own health needs are cast aside. Worrying about it isn’t even reasonable as there is no help available – even though he has a pace maker which now will go unmonitored.

The mother is on the phone with counselors, teachers and other professionals constantly along with taking the teen to various appointments and trying to set up supervision to monitor the teen. The other family members feel they’re held hostage in their own home never knowing when an outburst will occur.

The family’s friends make less and less social calls to them feeling uncomfortable about the uncertainty and the level of stress in the home. Bills pile up as legal issues roll in that parents are still responsible for as their teen gets into more and more trouble. At one point, they even try to use the legal system to at least set limits and put some type of structure into the situation knowing the behavior can’t be allowed even though the teen’s needs aren’t being met, but because the teen is a minor – they’re then told they’re responsible for legal fees. More stress and more bills.

The ETL teen feels angry, isolated and lost. The family feels the same. The family reaches out to try to get services to treat the child but is then audited. How could their business lose so much money in one year? If the audit is not found in their favor, they won’t receive any health care and service organizations will not see the teen without coverage.

The teen talks of suicide. Sits on the roof overlooking a farmer’s field. The mother watches helplessly caught in the midst of chaos of the system, her teen and the rest of the family. She tells the counselors what is going on. She tells her teen she loves him, but his behavior is unacceptable. She tries to spend time with her other kids and manage the house. Inside during a quiet moment, she too wonders if she fell asleep and didn’t wake up if there’d finally be some peace. She knows that’s not the way. Where can she go? What can she do? Sometimes, it feels there is no help at all for certain children and families and the more you try to get help, the more you get buried. Hopeless. Lost.

I wrote previously about my own experience with this situation. I feel for this family, and would never want to go through that again. It was many years ago that I struggled with health insurance and getting services. What a sad reality that for many nothing has improved.

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Jun 16

Context

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Context

One of the many rights of passage in our suburban community is fifth grade camp. It is a five day trip for fifth graders and their teachers to an outdoor education camp about 2 hours away. No parents. None. I remember my oldest attending fifth grade camp with little enthusiasm. He was willing but just barely. I knew we were in trouble, however, when I, amongst the sea of parents, watched as he walked through the crowd and up the steps of the school bus with his best friend. My boy seemed okay, but his best friend – the one he was to sit with and bunk with for the next 5 days – looked grief stricken. This can’t be good, I thought. Sure enough we got a call from camp that night and his teacher told us that Jake and his best friend were saying they wanted to go home. “You can’t keep us here against our will!” was their battle cry. We spoke to Jake on the phone and he agreed to try another day. Fortunately, both boys got in the groove and had a great time. Jake didn’t manage to take a shower or even change his underwear for the entire time away, but he came home with a smile on his face. When the bus pulled up on Friday, I remember fighting back tears because I had missed him so much.

The next child in our family to go to fifth grade camp was super excited. She too was going with a best friend, one that had no problems separating from her parents. I agonized about the weather the entire time Elizabeth was gone. It was rainy and cold. Was the jacket I bought her at the last minute warm enough? Would she get hypothermia hiking all day? Would she want to come home? Again, I was tearful and relieved when she got home and she barely gave me the time of day.

My third (and last) child was due to attend fifth grade camp last week. For many reasons we decided to opt out. Being away without a parent seemed too much to ask. She is my tough girl who needs to have an escape hatch nearby at all times. That would be me or her dad. There is also the intensity of the structure at fifth grade camp. The kids are scheduled from sun up until bedtime, moving from activity to activity and my youngest does not do well with that. She tires easily and gets irritable when she does. What if she melted down? This certainly would not help the already fragile relationship with her peers. Then there was the issue of her medications. The teacher was willing to give her medicine (which she takes twice a day), but there would be no privacy. This all seemed like too much to ask of my daughter. Plus, I don’t buy it – that fifth grade camp is all that important – so I asked her if she would rather go on a special trip alone with me. She didn’t even need to think about it before saying yes.

I found a wonderful ranch a few hours away from home that included horse back riding, fishing, wonderful meals, and unstructured time to be outside in an incredible oasis. It got me thinking (again) about context. My oldest two kids have ADD, but are fairly flexible and have good social skills. My youngest, however, struggles with these things in addition to having mood regulation issues and learning differences. It has taken me years, but I actually do not think there is anything wrong with my children. Fear told me otherwise, but acceptance has shed a new light. What I do see, however, is a mismatch between the narrow expectations our institutionalized school systems have for all children and the types of brains my children have.

Inspiring my youngest child to write is a good example of this. At school, kids are given writing assignments to do in the context of a crowded and distracting classroom. My youngest has dysgraphia along with ADHD and the act of writing can be incredibly laborious. “She has minimal output” the teacher tells me. And yet, as we were driving along country roads to get to the ranch and the horses, my daughter suddenly expressed a need for paper. “I need paper Mom! Don’t you have a scrap or anything? This is exactly the kind of place where I need paper because of all the inspiration around me!” she told me. While driving, I managed to find our directions, blank on the other side. Sarah took the paper, a pen from my purse, and the rectangle box of kleenex for a “desk” and began writing away. Within minutes she had written the opening two paragraphs of a great story. She is quite creative in the right context.

Once we arrived at the ranch, the head wrangler (Jessica) got me and Sarah on horses (along with 4 other guests) and we proceeded to go on the first of what would be five long rides through the country side over the next two days. Jessica, an expert on the topic of horses, enjoyed sharing her knowledge as she led the rides. These horses were beautiful and well behaved. They were relaxed. Jessica explained that the horses are free to explore the beautiful 300 acre ranch of mountainous terrain when they have finished their work for the day. For about 16-17 hours these horses are free. The only part of the property that is fenced off to them surrounds the guest cabins. The horses spend their late afternoons and nights climbing mountains, visiting creeks and ponds, working on their relationships (seriously), grazing on the land, and always come back to the barn area by morning. “These are free range horses” Jessica explained. “Here we let the horses be horses. They are not lined up and locked in paddocks. We do this for their mental health and it shows.” She also says that their vet (who is the head vet at UC Davis and an authority in the field) says that he has never cared for such a psychologically and physically healthy herd of horses. No behavioral issues despite the fact that some were rescued and all initially come to the ranch from different circumstances. Hmmm….

Over the next couple of days, Sarah sets her own pace and relaxes more and more. Before our first ride (just an hour after we had arrived), I went over to Sarah and her assigned horse to talk to her. “Go away,” she said. “Don’t be rude” was my stock reply. I started to launch into how much money I had paid for her to have this experience, how I had taken time off from work, blah blah blah, but instead I just walked back to my horse. Then it hit me. She was anxious. When she gets anxious she gets controlling….and rude. So instead of reacting I decided not to match her rigidity with rigidity, but instead to back off and give her space. To say that I have had to learn this lesson over and over again with Sarah is an understatement. Anyway, within hours I could tell that Sarah was more relaxed. After the two rides that first day, she grabbed a fishing poll and went to the pond just behind our cabin to fish. She was able to do this by herself. I felt comfortable just letting her go where she wanted and when she wanted. As I sat with my cup of tea I saw her lay in the hammock, run down to the barn, grab a fishing pole for a while, and simply walk around. That night walking back to our cabin from dinner, Sarah even held my hand for the first time in a long while.

So while I know that the ADD plus other issues are real for Sarah, would we really have the need to define them with such detail in another context? I am not sure.

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May 19

HELLO! My name is: Eve, Part One: What were you expecting?

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When I was pregnant with my first child, I spent untold hours with my nose in the book What to Expect When You’re Expecting.
Throughout my son Aaron’s first year of life, What to Expect the First Year was always close at hand, on the table by the rocking chair where I fed Aaron, sang to him, read to him, and rocked him to sleep for naps and bedtimes. Then, before I knew it, I’d switched to What to Expect the Toddler Years.

Sound familiar? Do you remember those days? Wasn’t it magically reassuring to follow along—and even read ahead–in books that
explained every stage of development, and answered every possible question—sometimes before we knew to ask it?

Things were different with my second child. She gestated on the other side of the world, in the uterus of a stranger. She probably didn’t benefit from prenatal vitamins, and regular check-ups by a smart, charmingly shy young OB/GYN. She wasn’t carried to term, and delivered in a clean, modern hospital. She didn’t spend her “First Year” and “Toddler Years” cared for by loving parents, extended family, and Millie, at her in-home daycare, when Mom worked.

We adopted our second child, Natalie, from an orphanage in Russia, when she was 2 ½ years old. The stark realities of suspected prenatal exposure to alcohol, a premature, unattended birth, malnutrition, lack of stimulation, and disease contrasted bleakly with the happy, healthy, normal development of her big brother, our birth child. When we brought Natalie home, there was no way to know “What to Expect.” The guides to parenting this child, though insightful, described a process of development and an outcome—a reality–that I was unwilling to accept for my new daughter.

Eight years have passed since I began parenting this child, with no official guide. Aaron has continued to thrive; surpassing expected
developmental tasks at every stage. He plays baseball and basketball, gets good grades, and enjoys a great group of friends. Natalie has made amazing strides too, and is a loving, engaging, spitfire of a child. But, Natalie has ADHD with a handful of comorbid conditions. I research and network daily, in hopes of finding any useful parenting guidance at all, much less a comprehensive, reliable, accurate parenting guide.
*******************************

Your personal story is likely quite different from mine. But, if, like me, you are parenting a child with special needs, then, at some
point, your child also strayed significantly from typical developmental,behavioral, or academic norms. So you know how it feels to go without a guide, into uncharted parenting territory. Frightening, anxiety provoking. Desperate.  Exhausting. Confusing.

What if I were to tell you that there’s a woman you can turn to, who will share her personal story of parenting a child with special needs, and that her story will predict and explain the many feelings, stages, and experiences that you will likely go through in your special needs parenting journey, from the time your child is an infant through early adulthood. This woman, Eve, isn’t real—she’s an archetype; a construct–all the more “real” for having grown from the truths-in-common of 35 such parents who contributed their stories to our upcoming book Easy to Love but Hard to Raise. (http://www.drtpress.com/) How might you feel to “meet” this woman; Eve? Relieved. Reassured. Empowered. Less isolated and alone.

In the next post in the ongoing series, it will be my pleasure to introduce Eve. To be continued…

(This post first appeared on Spruce Kids {Blog}.)

 

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Apr 29

What ADHD Has Taught Me: The Good, the Bad, and the Ugly

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Hurricane

Hurricane Kid

In previous posts, I’ve characterized Mason as my little hurricane. Recent blog themes on acceptance made me realize that, sometimes, hurricanes are needed.  In my case, I needed a hurricane to clear many layers of emotional debris that kept me from being available to truly love others, warts and all.

 Here’s some of what I have learned thus far.

 

The Good

Listen more, talk less.

Give one direction at a time then, wait.

Engage in conversations; ignore arguments.

I know my child better than anyone else does. Don’t ignore your instincts; instead, keep asking questions of doctors, teachers, therapists, other parents — anyone who may have insight into your child’s world.

“Boys will be boys” is not an explanation for ADHD, oppositional behavior, sensory integration disorder or any other a-typical category. 

Control less: no amount of organizational equipment (boxes, tubs, etc.) can contain his belongings or his apparent need to scatter them all over his bedroom.

Erratic chores? Leave the room while he clears one dish at a time. At least he’s doing it!

Delegate: let dad help pack allergy-free food for outings and long road trips; let Mason be responsible for carrying his EpiPen everywhere he goes.

Let go: allow Mason to go to a party without a parent supervising his food and behavior. (Well, … maybe sometimes.)

Expect chaos, impulsive behavior.

Accept my limitations: physical and emotional.

Lots of homework doesn’t necessarily mean lots of learning.

More compassion for those who don’t “fit the mold.”

Casual readers can be good people. Raising a good person would be a great thing.

The Bad

I talk too fast, use “too many words.”

For some, organizational skills are inherent; for others, some, not all, can be taught.

Give educators and doctors lots of paper so they’ll take you seriously and provide services.

ADHD gets you services; other learning disabilities such as Central Auditory Processing (CAPD) do not. Document those that will get your child the help they need. Then, ask for help with the unrecognized disabilities.

“Proficient” is a sanitized way to describe a below average student.

 Behavior modification systems are really tools to distract already storm-swept parents, and are usually “make work” programs for mom.

The Ugly

My faith is not as strong as I thought. Can I trust that He will take care of both of my children? Especially the one who may not be able to care for himself?

I’m angry, depressed, selfish, controlling and critical. These qualities do not help any of us.

Final Lessons

Well, luckily the good outweighs the bad and the ugly. Parenting this Easy to Love, but Hard to Raise child is like chasing a pendulum in constant motion. A good day is when you hit the moving target — guessing the right strategy for the moment. Miss, and it can be a downward spiral that leaves you bewildered, wondering where in the universe did that (response, behavior, problem) come from?

It’s a process, as they say. I can finally see, love, and accept the person behind all of the diagnoses: a sweet, sensitive, interesting little boy with a slightly off-center view of the world. Thank you, Hurricane.

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Apr 25

The Critic

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As much as I think I have “accepted” my children’s learning challenges, I forget that I still have The Critic living in me as well. The voice of acceptance is calm and even soothing at times. It has been cultivated and reflects flexibility and surrender to what is in me and my children, rather than rigid ideas of what “should” be true. “The Critic”, on the other hand, is loud and harsh and, at vulnerable times, unrelenting. Three kids with ADD? Yeah, right! Your just a bad mother. ADD? Not! Rather, it must be LMS (lazy mother syndrome). Maybe you are imagining all this because you are in the mental health field. Maybe you jumped the gun in terms of assessment and intervention and maybe all this HELP has actually created the problem. Maybe it is your hyper-vigilance with the oldest, the Sudafed you took for a bad sinus infection when pregnant with the second child, or the way the youngest baby turned blue as she left the birth canal and needed oxygen… Or, most benignly, maybe it is just your screwed up DNA.

It does not matter that we have consulted with experts in the field many times over the years to see if the ADD and related learning problems are our imagination, the validation we desperately need to avoid self blame. It doesn’t matter that we have been told that this is genetic or simply how they are wired. I still find myself living with chronic doubt. I don’t like to admit that The Critic is always nearby, but it is.

This week my 16 year old son endured his second full neuropsychology testing. The last time was in seventh grade when he came to me saying “something is wrong with me. I don’t learn like other people.” Well three years later with puberty completed and after a head injury 18 months ago, my son has a very different perspective. “I just don’t believe in all that stuff and I think those tests are stupid.” After my son was first diagnosed by his pediatrician with ADD at age 11, in 6th grade, we tried a stimulant medication but before we could get to a therapeutic dose, the side effects were overpowering. He couldn’t even go to school because he felt so sick. Definitely counterproductive. We didn’t try any other medications for the next year because part of me wondered if he really did have ADD or if, perhaps, he could “grow out of it.” It was a year later that we had him fully tested and felt better knowing that the ADD diagnosis was confirmed in this way. Over the next couple of years we would try Concerta, Methylphenadate XR, Adderal, Focalin, Stratera, and the Daytrana patch. My son is sensitive to medication and could not tolerate any of them.

Over time The Critic would sneak in thoughts like “Maybe it’s just adolescence” or “I grew out of my ADD like behavior and learned to compensate and so will he” or “It’s just brain development and will go away as he gets older.” The Critic also slipped in judgements about how my early parenting actually could have created the ADD behavior and eventually led to his giving up any attempts to do well in school. Then Jake had a mild traumatic brain injury just days before he was to start high school. The effects of the head injury? Lots of symptoms at first such as a tremor, scars on his face, headaches, trouble sleeping, depression and anxiety, but most of these went away. What is left, however, is a magnified version of his ADD, or so we think. When something is invisible it is really hard to feel certain. So, Jake’s neurologist ordered the neuropsych testing that he endured on two separate days of his spring break. First thing in the morning.

After the first day my son said “Mom I was so sleepy during the testing that I seriously think it should be invalidated and just thrown out. I did so bad.” I explained that most teen brains are sleepy in the morning. It’s just how it is. And I encouraged him to tell his thoughts to the neuropsychologist. For the second day of testing Jake did seem more awake as we left for the appointment. And at the end of that testing session we were called in to the office together for some preliminary impressions. Jake had shared his thoughts about the first day of testing. The neuropsychologist assured him that while his scores were lower than last time, each IQ test result was a snapshot in time. Not very reassuring to a teenager. Also, she said, what she was mainly seeing were significant problems with attention and learning, with input and encoding. Processing speed was so-so, just mildly an issue. Also not very reassuring. “It’s too bad that you haven’t been able to use medicine,” she said. “There are lots of other things that can help, but medicine can make such a difference for people like you.” Jake just stared in her direction. He is a polite boy, but I could feel the hostility in his silence. Embarrassment rose up through my body. I could tell that she could tell that Jake was not happy and it was awkward. Maybe if she had said something, anything, about his strengths Jake would have been more receptive, but no. She was not at all mean, but direct and to the point about his weaknesses. Hard for anyone to hear. She then said “I also saw evidence of some anxiety Jake” and went on to explain that at times when he asked to do something it seems he is overwhelmed and “freezes.” “No. I don’t think I have a problem with that at all” was Jake’s quick response, quietly maintaining eye contact. Soon after this we left. It turned out that during one test, the neuropsychologist had said to Jake “Boy, your really bad at this.”

I felt terrible that Jake had been subjected to such insensitive feedback, that the neuropsychologist did not seem to have the clinical skills to know that this information needed to be carefully given. Instead, somehow I felt that Jake had been wounded and that I had allowed that to happen. However, driving to work later that day, I realized that I also (once again) felt relieved because, based on the testing, Jake’s ADD is very real, a very real hinderance to his accessing traditional learning. Unfortunately, this is the type of learning that is expected of him now in high school and I want him to be able to go to college. My mind then starts going crazy with thoughts of the possible consequences of his not being able to do these things, such as depression, anxiety, drug addiction, and so on. What do you do when your big teenage son refuses to accept his diagnosis and take it as an opportunity to get help? And it is in this moment that I realize the motivating force behind The Critic. It is fear. I am so afraid for my boy that I turn to blame and the easiest target? Myself.

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Apr 15

Endless…

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I am a stickler for keeping up with dates and never procrastinating with my duties of all kinds but dropping the ball on not keeping up with my scheduled blog entries is truly not my fault.

You see…I was prepared to sit down and continue my lessons on firefighting. This lesson was about public school. As I began to type my first word, the phone rang and the wonderful people who invented “caller id” let me know the high school that kept Spitfire contained for almost 8 hours a day needed me.

Needed me to come get Spitfire.

It is spring…let the mania begin.

He is feeling good, too good. So good that he doesn’t see the need to continue his medicine regimen that keeps his emotions under the radar. Now, I am not one to hit the panic button often but I hit it last week. He will soon be 18 and, according to the law, can make his own medical decisions unless I take action to become his guardian, I think that is the right word to use.

“I’m just going to tell him that I don’t need them,” Spitfire continues on one of his rampages, “Do I have to go to the hospital to get off of them, I don’t have to, maybe just one medicine will work, not six, it is too much, I don’t even know who I am, I have been on medicine so long I don’t even know the real me, everyone makes fun of me, they think I am high, I am not, MOM.”

He is relentless this time, he is serious, he never follows through with anything so I am hoping he will let this go but I don’t think so. Panic button pushed, I am rambling just like him.

Breathe, his psychiatrist will no doubt talk some sense into him. Yea, that is it.

I have been casually looking into the right way to go about getting guardianship over his medical/mental care for several months, but as of last week I am full throttle into investigating the ins and outs of this process. I am learning that everyone is an expert, all can get the job done better than the last and there are not so honest people who are trying to take my money. Get this, there is one company over the phone who wants me to give them my credit card number and…
“For the low price of $95.00 I can get you in contact with a lawyer who will walk you through the paperwork, if the process continues for more than 4 weeks we will charge your credit card another $25.00. But this is to ensure that you get all the paperwork correct and to guarantee your guardianship over your son. He is a lucky young man to have you for a mom.”

CLICK!

Unfortunately, “caller id” once again comes back to haunt me. This company will not stop calling me, even after I said to stop. In the words of a very mature 5th grader, “really?”

I am still on the hunt for the right answer…the story of my life. You would also think my life would know me by now and just give me the answer I need. I am eventually going to get the right answer, so come on life give it up early, please.

Firefighting classes will begin after Spring Break.

Endless in North Carolina!

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