Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"


Saturday, April 16, 2005

A Swamp Plant & A Cactus

Pearls and Dreams

A friend asked me to tell the story of my sons and their Tourette's Syndrome. After thinking about it for a few days, I have decided to do just that.

I have two sons Samuel & Benjamin
BjSamuel2005

Samuel is 15 years old, wait, as of last thursday, he was 15 1/2 ...old enough he keeps reminding me, for a driving permit ... we won't go there. Samuel, is quite gifted, he has the diagnosis' of
OCD/TS/ADHD
ImSOCool

Benjamin is 13, has a lower than normal IQ (78), and has a diagnosis of ADHD/TS/OCD/APD/VPD/SID + 2 brain malformations .. Arnold Chiari Malformation type 1 (uncorrected) & Bifrontal lobe atrophy (lack of tissue, not degeneration of tissue)
Bj holding Twitch & Bear

Now, for those who don't know what that alphabet soup stands for, I will add the interpretation.
ADHD = Attention Deficiet with Hyperactivity Disorder
TS= Tourette's Syndrome
OCD = Obsessive Compulsive Disorder
APD = Auditory Processing Disorder
VPD = Visual Processing Disorder
SID = Sensory Integration Dysfunction


Samuel's OCD is far worse than any of his others, Benjamin's ADHD is his worse. Both boys have moderate TS, that is fairly well controlled with medications. (although, they are not light weight medications.)

Life with these two is quite interesting. I have had times where I have realized that their disorders have manifested in dramatically different ways ... and those are polar opposite ways ... and they collide. When Benjamin gets overwhelmed, he must have quiet. MUST. When Samuel gets overwhelmed, he must talk, tic, be vocal, noisy active. We live in a 2 bedroom, 3 room mobile home.
When both boys are overwhelmed ... it's quite interesting ..one needs the outlet of making noise, the other has to have it quiet. The more noise Samuel makes the more upset Benjamin becomes, the more upset Benjamin becomes, the more it causes anxiety for Samuel ... the more anxiety Samuel is under, the more he must make noise, the more noise he makes, the more it causes anxiety for Benjamin and it just works it's way to a nice little explosion.

Benjamin's tics are fairly quiet & benign ... facial tics, leg movements (although, the leg kicking one about got him in trouble in 4th grade till he figured out how to tell kids it was happening)
He aslo makes sinus sounds, and throat clearing and this weird clicking sound in his throat. His worst tic ... lip licking. It sounds so benign, but the poor kid seems to almost always have chapped lips!
Before he was diagnosed with the TS, he was going through massive testing on his sinus'. He'd had an MRI, CT scan, xrays, been to 2 ENT's and the pediatrician and I were at our wits end trying to figure out how to help this poor kid who couldn't breath well enough so he had chapped lips all the time and couldn't stop sniffing & coughing. the tics started, he already had a neuro, and they started him on a medication for the tics. I called the pediatrician about 4 days later and said "Doc, you'll never guess what, the sinus stuff is gone!" He just said "TIC!"

Samuel's tics on the other hand ... are annoying and he thouroughly enjoys the annoying nature of his tics. I think, if I could stop reacting, he'd probably enjoy them less. Not sure if this is a good thing or a bad thing. He makes animal sounds, he says senseless words, he also makes sinus sounds and throat clearing. He claps, he snaps, he taps ... while I do sometimes see the facial tics and neck moving tics ... mostly, they are vocal tics.

He also cannot seem to talk without an accent. Now, if we didn't living in Oklahoma ... but lived in Boston, or NY, or London, or Ireland or anywhere else he happens to be using the accent for ...it might be ok. But, we don't. I have never been able to figure out if this is an OCD thing or a Tic thing. I did not think it was related, he swore it was. The neuro said "yes, as a matter of fact, accents can in fact be either an obbsession or a tic" GREAT!

Benjamin's disorders are best handled by as little pressure as possible. When he was little, he would not eat if you put a whole plate in front of him. We could get him to eat a whole meal, but we had to give it to him in thirds. (he also had to have three food items on his plate, still does ... problem is, now he thinks he should still be allowed to have thirds with a full plate for each serving ...um ... noooooooooo). If you need him to do 20 math problems, you give him 10, let him finish those, and then give him the other 10. Give him the whole 20, he won't get but 1 or 2 done.

Samuel's disorders are best handled by having all the pressure, all the expectations all the structure possible up front. If you give him 10 math problems, then try to give him 10 more, he's going to get very upset because you only gave him 10. You have to lay out EVERYTHING you expect him to do, up front and clear and consice. It is better to give him more, and back down, than to give it to him in bits and pieces.

Benjamin needs tight structure in order to learn. He needs quiet, he needs it organized and well thought out. He needs time to complete it without pressure of a time limit. Tell him he has 5 minutes to do something and he can't start it. Just tell him to do it, and he'll get it done in 4 minutes. Everything has to be done with in these strict models of efficiency that seem to make sense only inside his brain ...but they work and they work well.

Samuel needs loose structure in order to learn. Lay it all out. Stick him in the middle of a crowded noisy room with a list of things he needs to get done and the time he's to have each one done ..and it will be done accurately and on time. Tell him it's due when he's finished, and he will never finish it. He needs the time limit. He needs the chaos to tune out. He needs to organize it within his own mind in a way that makes sense only inside his brain ... but it works ... and it works well.

I came to the conclusion a few years ago when dealing with these two kids. While most parents have kids who are vastly different, when you throw the mix of disorders/mental illnesses into the mix ... it gets quite interesting and is a balancing act that would make Barnum & Bailey jealous if you could succeed.
But I realized I was raising these two kids and it was like raising a swamp plant & a cactus in the same planter. One needs careful nurturing, water, attention ... the other needs little water and don't get too close, prefers to be further away from other plants ...

My life ... raising the swamp plant and cactus ... the cool thing ... I get to watch these two bloom!

8 comments:

  1. This is a really great entry... That you are able to step back from the situation and analyze things in this way is to your credit. I feel privileged to share a glimpse into your lives.
    Your boys are lucky to have you-

    I am going to try and pop on over to my blog to write an update now, since I dropped off the face of the earth. Oi!

    ReplyDelete
  2. My, you have your hands full! Thanks for describing things so well. Our little grandson has a whole basket of physical problems which is yet being investigated. Life is never easy for some! Blessings to you in this path. I have often thought of Job (yea, we have some challenges in this household too) and what he said: "Even if HE slays me, I will still trust in HIM"! God is looking for those who will follow HIM, no matter the cost! And sometimes that cost is health problems.
    Elizabeth

    ReplyDelete
  3. Bronwyn ... I cheat in the stepping back and analyzing ... my dad taught in special ed for 42 years, my mom for 25.
    I was a special education major when I did go to college ... only educational classes I actually got to take were psych classes (If I were to go back, I'd probably go into a psych field).

    Plus, he's had a great team of speach therapist, occupational therapist, behavioral psychologists, pediatric neurologists, physical therapists, developmental pediatricians that have helped me to figure Benjamin out, then watching Samuel and realizing he's just the opposite, just took the same principals they helped me to take apart Bj's behavior ...and viola ... I had Samuel's taken apart too!

    It doesn't hurt that I find human behavior facinating and I have a very weird sense of humor.

    Elizabeth, I do have my hands full. Life is never boring. But ... aren't the joys more intense when you understand what true sorrow is? There are times that I think I would trade all of this in a heart beat ... and then when I experience something like the day Benjamin read one of my poems in front of his class for the first time ... the joy and the pride ...something that most parents never get to experience in that intensity ... i'm not sure ...
    I don't like the suffering, that's for sure. But God promised to restore the years the loctust have stolen .. and I have seen him do that over and over and over and over and over and over again. The joy and rewards far outweigh the sorrow and cost.

    ReplyDelete
  4. Your sons are lucky to have such a great mom! I think u missed your true calling as a child psychologist.
    By the way, could u help my son out with his........lol
    Lori

    ReplyDelete
  5. OMG, girl...

    Bless you as you raise those two beautiful children of the King!

    ReplyDelete
  6. how blessed they are that have to be their gardener!

    ReplyDelete
  7. True, Peggy...you know I do not know how anyone makes it without a wonderful Messiah such as we have to help us! The hardest part is to watch your children or grandchildren suffer and not be able to do much about it! But I cling to the fact that the trials of this journey will be lost in the joys of THE FEAST, yet to come. And something Max Lucado said really helps me too: "There are certain passions only learned by pain. And there are times when God, knowing that, allows us to endure the pain for the sake of the song." May we ever be singing! And there is a worse pain than the ones above...that of having a child reject God and that has happened to us...is happening to us! But yes, we too cling to the promise that He will restore what the locusts have stolen...and it may not be very far off either from the looks of things continually happening these days...
    Elizabeth

    ReplyDelete
  8. Hey there,
    I'm writing a short note to let you know- I think you have a very informative blog. I enjoyed the great read here today. I'll be back. Keep it coming.
    alternative health
    www.alternativehealthreporter.com

    ReplyDelete