Pearls and Dreams
Today is May 1st, Blogging Against Disabilism Day.
I tried to decide if I'd write about me, my husband, my mother or my kids. After contemplating all day. I've decided to take the easy way out and repost a post I'd written before. One about my kids. Not because it was the easy way to go, but because it is so profound in the way we live our lives as a family.
(if the pictures don't come out, I'll fix them when I come home, right now I have to take the swamp plant to a friends concert!)
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
Samuel is 16 years old, wait, as of last month , he was 16 1/2 .Samuel, is quite gifted, he has the diagnosis' of
Benjamin is 14, 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)
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!