The Acronym Train

I can’t believe it is happening again. But it is.

I have been aboard the Acronym Train stopping at each station for a new set of letters for years now. We have visited stations like OCD, ODD, SPD, GAD, PDD-NOS, MD-NOS, BP and now my train is heading to a new station: ADHD.

Yes, the day has come for a new stop at yet ANOTHER letter station. It is time for me to take Gabriel to get evaluated for ADHD (Attention Deficit Disorder – He is not hyper, but who knows what the test will show).

This isn’t a revelation – that Gabe has ADD, I have always known this. And I have always said that actually having that diagnosis would only benefit him if we were to medicate for it. Unfortunately, it looks like we may just have to.

As I am sure you have heard, ADHD shares many of the same overlapping indicators as SPD, which makes distiguishing between ADHD and SPD challenging, but not impossible. 

Dr. Roya Ostovar, in her book The Ultimate Guide to Sensory Processing Disorder says, "The area of motor functioning may be helpful in making the distinction between SPD and ADHD.  Most children with SPD have clinically significant weakness in motor coordination, balance, and movement.  The opposite is true for most children with ADHD."

Ironically, Gabriel has always had a good motor coordination, balance and movement.  Gabriel learned to ice skate, in full hockey gear, in less than an hour at age 5.  He learned to ride a two wheeler on time, and can literally climb barefoot up the light pole in our front yard unassisted (much to the neighbor's chagrin).
However, he has a number of other challenges that are impairing his daily living.  Gabriel struggles to find something to do. Not just choose an activity that is of interest to him, but spend more than 30 seconds deciding whether or not it is worth pursuing. And then actually doing it.

Let’s be honest here – he struggles to do things that he likes, not just things that his teachers or I want him to do.

That is challenging.

Add to that he can’t stay on task for more than maybe 3-5 minutes without flat out losing interest and you have a child that literally wanders around our home for hours while we have this conversation:

“Gabriel, I need you to find something to do.”

“I don’t know what to do.”

“OK, check the list of ‘activity ideas’ inside the pantry door.”

“I don’t want to do any of those things.”

(Please imagine at this point that Gabriel is crying, and whining, and most likely throwing himself on the floor, with even perhaps the quintessential fit throwing body language of kicking his feet and pounding his fists – then please remember he is 9. NINE.)

“Ok, then I will give you some choices: Lego’s, Bionicles or go out back.”

“No, I HATE Lego’s!"

“Choose Bioniccles or go out back.”

“OUT BACK!” He yells at me.

And out he goes.

And I look out back.

“Gabriel, you can’t just lay on the table, you need to actually DO SOMETHING.”

“OH! I hate the swings!”

“Ok, then don’t swing.”

“There’s nothing to do!”

“OK, get inside, and do Lego’s – I don’t care if you like them, but you are doing them for 30 minutes. If you don’t want to do it, then you can just look at them.”

“UGHHH!! I HATE LEGO’S!!”

REPEAT. REPEAT. REPEAT.

All day long. And he does NOTHING. Unless I stand over him and force him to comply. He cannot and does not just go play – you know like when we were kids? In his room or in the yard, he can’t just entertain himself. EVER.

We have worked endlessly on play skills, and providing things he actually is good at (this is hard, becaues he is under the impression he sucks at everything), but many of those include being out front and he cannot be out front unsuperivsed.  Safety issue.

So, assuming I don’t follow him around making sure he is doing something, he will be found laying on one of the two couches, laying on the dog bed, laying in a chair out back, laying in his bed. Pretty much laying around waiting for me to invent a new activity that he is dying to do.

If I come up with an activity that he is interested in, revolves around one of his stuffed lions, or that he has no choice but to do (chores), he stays occupied. Usually crying (chores) while he does it, or threatening to quit, before following through on the threat, and finally quitting.  He just cannot sustain his attention span for more than a few minutes.

Nick has handled this great over summer – and has engaged in playing with Gabriel in a dozen or so different games, but I have had to put an abrupt halt (after less than two weeks of trying) on them doing anything together unsupervised or Gabe gets distracted, uninterested, or simply deems the game “unwinnable” and quits. Often with a throw of the said game into the air.
Not fun.

Here are the ‘symptoms’ of ADHD (formerly ADD) from the website WebMD:

A person with ADHD may have some or all of the following symptoms:
  • difficulty paying attention to details and tendency to make careless mistakes in school or other activities; producing work that is often messy and careless
  • easily distracted by irrelevant stimuli and frequently interrupting ongoing tasks to attend to trivial noises or events that are usually ignored by others
  • inability to sustain attention on tasks or activities
  • difficulty finishing schoolwork or paperwork or performing tasks that require concentration
  • frequent shifts from one uncompleted activity to another
  •  procrastination
  • disorganized work habits
  • forgetfulness in daily activities (for example, missing appointments, forgetting to bring lunch)
  • failure to complete tasks such as homework or chores
  • frequent shifts in conversation, not listening to others, not keeping one's mind on conversations, and not following details or rules of activities in social situations
Dr. Roya Ostovar, in her book The Ultimate Guide to SPD, talks about how SPD and ADHD share similar behavioral characteristics, but warns, "Some children may have just SPD or just ADHD, but some children may have both. A single symptom does not make a syndrome, and does not necessarily lead to a diagnosis."

But, Gabe displays all of these indicators. And this isn’t new info. But like I said at the beginning, I just didn’t see the need to diagnosis this since it was so low on the totem pole of issues that need to be addressed.

But now, I am worried that it is getting in the way of him functioning as well as he could.

Although I am not a fan of more medication, or more diagnosis, or more labels, or more whatever, I am already on this Acronym Train and I just need to keep on chugging along until I get on the right track(s). 

Next station: ADHD

All aboard!
H

14 comments:

Chynna said...

Ohhhhh, Hartley. =( I'm so sorry you have yet another assessment and acronym to worry about. Poor Gabe.

Funny that you posted about this because Jaimie has PDD added to her list now and Xander is being evaluated for more. Kids shouldn't have so many letters after their names unless they earned them at University. It's crazy.

You and Gabe are in my thoughts and prayers, as always.

Chynna
www.lilywolfwords.ca
www.the-gift-blog.com
www.seethewhiteelephants.blogspot.com

Cheryl D. said...

Great blog! I'm glad I paid a visit! My daughter acts ADDish, but in a very different way. She can certainly entertain herself and do a project from start to finish. She could read a chapter book in less than 2 hours' time--in one sitting! But get her to focus on dressing or brushing teeth, etc., and she can really forget what she's doing. She can have a really hard time focusing. I was told that this is a function of the autism and not a separate alphabet label.

Kris said...

I have a 12 year old with ADHD and a 7 year old whose diagnosis is not so clear cut. He displays some autistic-like symptoms but his dx is ADHD and SPD with some language problems thrown in for good measure. His doctor really does not think he has ASD as he does not display some of the key features. However, he too stuggles mightily with finding something to do and then sticking with it. He is a sensory seeker and does a lot of jumping on the trampoline and swinging. He likes to play board games, ride his bike, play "rough" games like wrestling, Batman, etc but has a very hard time entertaining himself in general.

I was told this is a motor planning problem - he can't "organize" himself enough to play constructively.

I have always been a little skeptical of that explanation. What do you think are the reasons behind Gabriel's difficulties in this area? This is one of the areas that frustrates me the most. I have tried to engage him in play and sometimes it works but often it does not. He just seems exhausted by it and ends up laying on the floor. I always feel so ineffective and guilty about it!! Some days he seems "on it" and will play pretty well with his brothers and sister and other days he is just a mess, unable to do anything constructive. Is this SPD, ADHD, dyspraxia, ASD?? Or all 4?? Or something else????

Hartley said...

Kris: The fundamental reason my son does anything is a mystery. :) All joking aside, I think Gabriel's challenges stem first from being Bipolar (easily bored) and second from Autism (lacks an understanding of play skills in general). I do not believe that it is motor planning (he has been in OT on and off for over 5 years, we have that down at this point), but rather a true understanding of meaningful play. He wants to be entertained, because it is easier. Which sucks.

I believe the attention issue is affecting his ability to sustain meaningful play. If he was actually able to concentrate on something enjoyable for more than five minutes, I think he would learn more play skills -- and hence be able and willing to engage in meaningful play more often.

Does that answer your question? If not -- ask me again! :)

Hartley

mom2spiritedboy said...

Oh this hits close to home today. While we have had the ADHD diagnosis a long time we received a new one today and a confirmation of one we thought we held but was called into question recently. My head is swirling from it all. The diagnosis only matter for treatment (meds, therapy etc) and this newest one was soooo necessary but not easy to hear. Our son now has 8 distinct mental health/neurological diagnosis. Wow - I've never said (typed) that before. I usually just say "complex neurological issues".

Taz's Mama said...

we just got a ADHD diagnosis as well. but i didn't push for it. i tend to think it falls under the bipolar category. i thought it was pretty low on the totem pole of things to treat too. but since he started Intuniv (along with other BP meds) it's made more of a difference than i thought it would. his attention span is better. the biggest difference is in impulse control.

anyway, your story sounds just like my little guy, only an older version. about the whole SPD conundrum. since starting the Intuniv, our OT has been able to do so much more with Taz for sensory therapy than she was before. the two go together but sometimes if you treat one, the other also improves.

good luck. let us know how it all goes.

Honey said...

Hi

My son Elisha was diagnosed with ADHD when he was 5, right before he went to public Kindergarten. He has always had the hyperactivity factor, but that is wearing off slightly as he gets older. By the end of his Kindergarten year he had a diagnoses of Autism as well. We also discovered he was gifted off the charts. Further add to that the Sensory Processing issues and you have a nice can of alphabet soup. We chose the homeschooling (all 5 of our kids) path because it fits for us. He is ten now and life is getting a bit easier.

I can so relate to what you were writing. My son wanders around saying he is bored and has trouble with sustaining play for more than 5 minutes. He is getting better at this, but it is hit and miss.

I love your idea of the list - I need to do that again.

Thank you for your article.

Blessings
Honey

brotherlyloveejkp said...

Oh Hartley... It's so very difficult when we have to go through this diagnosis part. And to add more alphabet soup to Gabriel's life... Hang in there. I hope that this school year gets better for all of you...

Abby said...

I am so glad to have found this blog. My daughter was diagnosed with SPD a year ago and I have learned so much since then! We have worked with a wonderful OT who has made a world of difference for her and us. She runs a sensory help desk for people who don't have access to an OT who specializes in Sensory Differences. Here is the website if anyone is interested:
http://www.sensorysolutionsboise.com/

Danette said...

Hartley, I am also a mother of an adoptive child with special needs--very similar diagnoses to Gabe's. I was in pain reading about the described play scenario and could relate to it from years past! I want to bring up two points. 1. Are you aware that the diagnosis of ADHD also says "The symptoms do not occur exclusively during the course of a pervasive developmental disorder, schizophrenia, or other psychotic disorder and are not better accounted for by another mental disorder (eg, mood disorder, anxiety disorder, dissociative disorder, or personality disorder)." It seems like Gabe may lack play skills under his diagnosis of autism, like you mentioned above. 2. Also, I'm sure the pdoc will advise you, but be very careful with ADHD meds. They can induce mania in those with bipolar. Good luck in whatever you decide. I know how difficult this is.

mariner2mother said...

Hartley, I feel for you and for Gabriel. But what I most feel for him is hope. I think of the difference in my nephew, before and after he used ADHD meds. Once he started taking them, he was able to finish a math test (and he finished first in the class, receiving high grades). It changed his world for the better.

My SPD son has a basket full of his own issues, but, after reading this post, I thank God that he enjoys play and is able to keep himself engaged in it for hours. School, on the other hand is a horse of a different color for him.

Keep up the awesome work, mom.

Hartley said...

Thank you ladies for your comments! It is wonderful to see new people commenting. Yay!

I absoultely agree that medication is tricky, especially given my son's current medicine regimine and his diagnosis. I assure you, any and all decisions will be vetted through his psychiatrist, Dr. King. And monitored LIKE A HAWK.

We will see what happens -- first back to school, then more doctor's appointments. Ugh.

Thanks again all!
Hartley

Meg @ RaisingBipolar said...

This sounds much like my son when he was younger and I would caution against the theory that meds can fix all aspects of neurological issues. Or that they need to be fixed. Some of these issues they outgrow naturally. I don't know what med regime your son is currently on but if you at all suspect bipolar I would stay far, far away from stimulants (we have some personal experience with this).

Gavin Bollard said...

Hi Hartley,

I'm actually surprised that you need to go for an "acronym assessment" for ADHD when he's already got ADD.

ADD no longer exists, it's called ADHD. You said as much in your post.

Actually, there are two forms of ADHD.

ADHD-I and ADHD-H (Inattentive and Hyperactive). ADHD-I = ADD and ADHD-H = the old version of ADHD.

Confused?

In any case, the best thing for either form of ADHD seems to be stimulants.

The obvious first medical stimulant to try is Ritalin and it's day-strength variety (Concerta). This one seems to be safer than all of others so far - and it's got 50 years of trials. My eldest son is on it, so if you want any first hand advice/stories/reassurance, just let me know.

BUT...

Before you go there, you might want to see if any natural stimulants work. Coffee and Coke which contain Caffeine would be the obvious starting points there.

After all, maybe you will feel better if you can say, "My son needs a coffee in the morning to get going" rather than "My son is on Ritalin".

Good luck.