Wednesday, June 30, 2010

Almost Wordless Wednesday...

Of course, as has become my tradition I have to add some words.  How do you get a bunch of 6-8 year olds to voluntarily clean up trails & a lakeside beach?  Why give them cool tools of course. These grabbers on a stick worked wonders (arrows point to the "tools"). We nearly had a knock-down-drag-out fight over who gets to use the 'tools' vs.who holds the bag for the garbage.  The boys started cleaning up nature too (pine cones, pine needles, sand, sticks) because anything you can pick up on a grabber on a stick, well that's just cool.

So as far as this week, not that I post much anyway, I am working hard as a den leader at my son's Cub Scout day camp. More fascinating is that there are 3 boys (including my son) with Asperger's Syndrome. One is more social, more outgoing, no gaze issues but more obsessive-compulsive and attention problems. The other is more like my son. I paired my son with A, and this boy is truly a special child. I made certain to tell his mother (and his grandfather who was our token male for half the week), I ended up triple buddying these two with the other child with Asperger's (the one more like my son). A is an angel. He knows just how to get these two engaged. They laugh & play while swimming. A makes sure the other 2 don't wander off & keep up with the den. A knows how to make them laugh. Both my son and child #2 have become more social. Son & child #2 have been more verbal. Son & Child #2 now sit with the group for Lunch (with A between them). Most interesting by the 2nd day, Child #2 & my son both started volunteering for activities. Child #2 got a bulls eye in archery yesterday. My son scored a bullseye today. Child #2 has improved in BB shooting, and my son qualified as an "expert marksman" by score. I proudly told Child#2 how much her son has changed. I told her he's started volunteering for events (this morning he proudly held the flag for opening ceremonies) and he is generally always smiling. Mom was happy and turned to see her son smiling and trying to patiently wait to tell her all about his day. It turns out that A goes to school with child #2. A has been an angel in disguise for child #2 in the past.  Knowing exactly what she goes through, I knew how much the comments about her son's verbal volunteering, positive attitude and awesome social skills development would mean to her.

The best comment from A's mom was, you know I always knew he was a special child. He was just born that way. I told her A was born with a halo on his head.  Thanks for stopping by..

Friday, June 25, 2010

Some things just can't be hidden...

When you first glance at my son, he appears to be a normal, neurotypical almost 8 year old boy. If you see him on the playground or in the classroom, at first he seems just like everyone else. Watch the playground for a longer period of time and you can often see some of his social deficits. Often boys play made up games, and my son can make up games with the best of them. However, often the rules change during play. While the neurotypical boys can roll with the punches, my literal, concrete, rule-boy cannot. This leads to frustration, and unfortunately sometimes tears or even anger (usually self-directed as he is frustrated that he just doesn't get it).  In the classroom, he usually doesn't get the jokes or the play on words, but he knows it's supposed to be funny so he just laughs like the rest of the class. (Similar to the why Eat Mor Chikn is funny post). 

My son has significant issues with expressive communication. While my son's buddy J can go home and tell of the day's adventures in details, I have to drag out the day's events from my son.  He's not the world's greatest storyteller either. This was painfully obvious during second grade writing journal. It was a constant battle with is 1:1 aide. Now even though his IEP clearly stated that they could & should offer alternatives for writing assignments (such as drawing pictures, cartoons or making dioramas) they never did. But they DID complain on how he would "ignore" them, not look them in the eye (well DUH! He has Apserger's Disorder--this is one of the hallmark traits of kids on the spectrum), so they decided he was refusing to work.

Oh yeah, I can't WAIT to see is 4th quarter report card. It should be an entertaining & interesting read!

Now while my son often subconsciously hides many of his Asperger's traits (he has even learned to fake looking people in their eye by looking at their chin), he absolutely cannot hide his sensory issues.

The ONE thing that the advocate observed when she did a classroom visit was his sensory issues. If he was frustrated or anxious the foot would tap or the pencil would be tapping on his desk. He would wiggle to reset his internal mechanisms. Or he'd stretch. He seemed a bit fidgety to her, but not hard to engage with the right technique. (Which reminds me why is it so awful if a child learns better through practical applications of studies or through play?  Someone please explain this enigma to me.)

He started art therapy a few weeks ago. He so loves art, that he had no reservations about going into her studio without me. In fact if his therapist & I chat for a few minutes before starting he gets anxious and antsy. When he works on his creations, he is more talkative. Still with his pragmatic deficits, and often a one sided conversation, but he'll at least attempt to express himself verbally while being creative.  But once the air conditioning kicks in, he jumps & she can see a change.  If the sun moves and the shadows change, he notices. If a loud car drives by her home (a rarity) he notices.  When she changed the seat cushion, he noticed. She changed brands of clay, and boy did he notice the change in texture. As my Mr. Touchy McToucherson loves to touch EVERYTHING, he does rather well with clay.

Now since my son seeks visual input, but has sound aversion, fireworks are always a real treat. He can't handle the noise, but loves the sparkly lights in the night sky.  He is touch seeking with his hands, but oversensitive everywhere else so ear plugs are very uncomfortable for him. (Sheesh, he has a hard time swimming the backstroke as he hates how the cool water feels in his ears. He is considering the ear plugs because he is motivated to pass to the next level) Last year's solution? We watched the NY fireworks on TV. We don't have a large screen TV but is large enough to get a decent view, and often they play music in the background. Plus instead of the loud vibrating BOOM! POW! of live fireworks, it's more of a pop & crack in TV land.

Unfortunately his "friends" have started to notice his sensory differences. And like some 7 and 8 year olds they feel obliged to comment and question. My son does not want to be different. And this has caused some power struggles in school with the resource room teacher and his 1:1 aide.  Even they forget he is different and have labeled him as difficult.

I wish I could do more to help my son. But I don't even know if what I am doing is right, never mind the fact that I know that I am doing the best that I can with the options that are available.

I don't want to change my son's neurobiology, but I wish I could help him to accept his own idiosyncrasies, perhaps his friends might be more likely to accept and embrace his differences, because after all he is more same than he is different.

Wednesday, June 23, 2010

Almost Wordless Wednesday Part 2...

Yesterday I wrote about how animals make a huge difference in my son with Asperger's life. Last fall, an agency we work with suggested that we try therapeutic horseback riding. I was intrigued by what I read about the multitude of benefits & transformations from therapeutic riding but I was apprehensive. Two months prior my son went to a classmate's birthday party on a horse farm. It was a miracle we got my son to touch the horse, and 45 minutes to get him to sit on a horse. As soon as the horse moved, he wanted off. It was too overstimulating for him. But I figured it can't hurt to try...

I prepared him for his first visit, well sort of. I got the call at 2:00, my son got out of school at 3:15, and we had to be at the farm by 5:00.  Well at least he didn't have too much time to dwell or overthink it.  I had explained to the manager our previous horse experience. Much to my surprise and delight, my son hopped right on. At first he had a leader (someone who leads the horse) and a sidewalker (a volunteer who walks on the side of the rider, keeping contact to ensure the child is stable & doesn't fall off).  Soon he graduated to riding only with a leader. Of course one time he did fall off--into a plastic garbage can. He was so excited playing a game he didn't realize how far off the horse he leaned.  He popped up laughing--he wasn't hurt but he did think it was funny!

We only have 2 sessions left. I cannot afford to continue and the agency can no longer fund the sessions.  Seven months after he started, he can now ride alone and even trot the horse alone. This is a picture of him riding Leonard, a 12-year old Belgium Draft Gelding.  Little Boy Blue has certainly come a long way...
not only in his riding skill but his overall confidence in himself. And that is worth more than anything else.

Almost wordless Wednesday...part 1

Sometimes all you need is a cardboard box to have fun. This is what I woke up to after my Mother's Day nap.  See this post if you want to know why I so desperately needed a nap on Mother's Day.

My son climed in the box, added Roxie the dog & my mom pushed them around. His laughter & the dog barking is what woke me up...

Monday, June 21, 2010

Why dogs have been the greatest therapy yet...

The only other 'therapeutic intervention' that worked as well as the dogs is the recent addition of Art Therapy--my son LOVES being creative and is doing so well & is so comfortable it's hard for the therapist to see his Asperger's traits (other than sensory processing disorder).  On to the pet therapy..

My son had been begging for a dog for quite some time. We had a few Betta fish & gold fish over the years. My sister has 2 dogs that my son adores (except the one that bites his ankles). My son adores my cousin's police-academy-reject German Shepherd. Several of our neighbors had dogs. So one hot April morning we were out and about and spontaneously I asked my son if he wanted to take a trip to the county animal shelter. (Of course the answer was a resounding yet). I called to get directions from our location and their hours. When we arrived several of the dogs were out at a PetSmart adoption fair.  There were some large dogs and some loud dogs (neither appropriate for condo/apartment living).  The dog we found on the shelter's petfinder website was no longer considered suitable for adoption due to illness. My son was disappointed.  The one mid sized dog was very strong and didn't seem right for us.  The staff knew of a couple of dogs that were out at the adoption fair. The young girl helping us didn't know who had been adopted and who would be coming back. Even though it was close to closing time, they offered to allow us to wait until the adoption van returned.

So we waited. My son checked out the cats. I reminded him that I am highly allergic to cats so that would be a really bad idea.

And we waited. Another tech came out and looked us over, she thought that one of the dogs would be perfect for us. She just knew. Even though she had just been returned by another family the other day, the management felt that an unsupervised toddler was the problem, not the dog.

Then the van arrived.  The tech excitedly came back and said that the Puggle was still available.  What on earth is a Puggle? She explained that a Puggle was a Pug-Beagle mixed breed. Small to medium sized. Lots of energy. And then I saw her, tail between her legs. She looked a little sad. We were told her name is Laurelei. The volunteer walked the dog over, and my son turned around. It was love at first sight. The Puggle's tail started wagging and she looked like she was smiling. The techs took us into the adoption room.

She said they had her as a stray. They weren't sure but they couldn't get her to play.  She brought a tennis ball in.  I sat on the couch. My son stood up. The dog in the middle. My son bounced the ball. The dog jumped up happily and snagged the ball and jumped in my lap. I tossed the ball back to my son and the cycle repeated.  My son giggled pure joy. The dog wagged her tail like there was no tumorrow.

The shelter tech looked at me and said, "I'm really sorry, but it seems that you have been adopted." My son's face lit up.

It all happened so fast. They found a collar & leash and a kennel so we could safely take her in the car. I filled out the paperwork. My son sat with the dog. And then she was ours... After we put the kennel in the back seat, my son said she looked uncomfortable. So he put his PRIZED favorite baby blanket in the cage with her. (Now that was a surprise!)

My son excitedly called my mom to tell her. Mom asked to speak to me, "Are you freeking crazy?!?" I told her wait and see. We met her at Petco (we had nothing for the dog). She took one look at my son's face and the dog's face, shook her head and said "Okay I see what you mean." Mom-dar at work, my gut told me this was a wonderful thing. Then my son said "Oh, and her name is Roxie."

Now it wasn't always rainbows & sunshine. This dog caused a few severe panic attacks in my son, like when she got off the leash & tried to go swimming in my mom's in ground pool. Or when she shredded my son's stuffed animal. But it's been much more good than bad. Even school called to find out what changed at home because my son was so different in school.  He woke me up at 6AM so we could walk the dog in our PJ's. Took responsibility to make sure she had food & water.  He even started writing her name on his homework & classwork pages instead of his own. His happiness increased 100 fold.

Coming over to help walk Roxie in the morning while I got ready for work & my son got ready for school became a therapeutic routine for my mother. She had something to look forward to each morning. (a huge breakthrough for my mom since she was totally devastated by losing my father in 2008) And Roxie loved to walk with her. My mom even said that walking Roxie helped with her anxiety & sadness.

Then my son started saying that I needed a small dog to carry in my purse. (Have no idea where that came from.) It was a joke between us. Since Roxie was "his" dog, I needed a dog too.  Whatever. We live in a small 2BR condo.  Flash Forward to August 2009...

We had to go to the pet store to get more food. A local rescue group was outside with dogs & cats for adoption. Of course we had to check them out. We found Oscar, the one eyed Chihuahua.  It was the end of the day and I was asked if I'd be willing to foster Oscar for a couple of weeks until the rescue had another adoption fair. Since our Roxie was adopted from the county animal shelter (and they have strict standards) and I was able to give a vet reference, the rescue manager gave us the go ahead. Oh boy. The timid Chihuahua was excited. They loaned us a cage and off we went. Roixe had no problem with Oscar, though she is more playful than he.  Unfortunately Oscar develped kennel cough and started losing weight. The rescue gave us medication, advice on how to get him to eat. We confirmed with our vet that Roxie was not at risk since she had her vaccine several months ago. Poor Oscar couldn't walk more than a few feet without coughing up a storm. My son was heartbroken at his suffering. He made sure Oscar had all he needed. He carefully carried him so he wouldn't have to walk so far to go to the bathroom. Comforted him after he needed a fluid bolus for mild dehydration. We kept him 5 weeks as a foster and it was time.  Oscar was now healthy. We decided to keep him but we had to bring both dogs so the rescue could see that they got along. 

It was funny when we broke down the rescue cage, Oscar dragged his bed on top of the cage as if to say "please don't make me leave".  The rescue was impressed not only how well the dogs got along, but how friendly Oscar turned out to be. (Most chihuahua's don't like children & are one-person dogs)

Since Roxie is younger & more energetic, she is great to run around the block with. Oscar is more of a couch potato. So my son started to read to Oscar. And Oscar would just lay there with his head on my son's shoulder and listen.  My son's reading skills advanced by more than a grade level.  Oscar is good to lay on my son's lap or snuggle in bed with him. Roxie has lots of energy. She is great to play fetch with and just be silly together. The physical therapist even "prescribed" that my son has to play tug-of-war with Roxie to increase his core strength.

From these dogs my son has made many gains. He has increased his empathy and sympathy. He has learned to be more patient and tolerant. He has learned to share better. He beams with pride when classmates get excited over his dogs when I pick him up from school.  He understands now that it is okay for them to pet the dog, because Roxie loves him and they are going home together.  His mood has been much brighter. His outlook has broadened.  It's kind of funny when my son lays on the dog bed with Roxie and shows her the games he is playing on his netbook.

In turn the dogs seem to watch out for my son, we jokingly call them the muttly crew. This year as a "Christmas Present" we purchased passes for the county off-leash dog park. (see photo at right). My son gets excited to watch Roxie run full speed trying to race the big dogs. (She usually tires them out & wins. Her only "loss" was to a greyhound & a Great Dane.) My son cracks up trying to get Oscar to run after him. He thinks it's hilarious that Oscar walks around trying to get someone to pick him up & carry him rather than exercise.  Oscar has taken to following my son around lately.  My son asks why, I tell him it's because he tastes like chicken. (And my son eats A LOT of chicken).  Oscar's tail starts wagging when I say "Bed time, Blue".  He follows my son upstairs so he can snuggle in my son's bed.  Sometimes my son is cranky and doesn't want to be bothered, but he usually softens when the dog starts following him. He realizes that the dogs love him no matter what.

At school, his 1:1 age has realized that if my son gets writer's block then ask him about his animals.  Unfortunately he is rather obsessive about his dogs & animals in general.  More unfortunately the aide has decided she's tired of hearing about the animals so she tries to steer him away from writing/talking about the dogs. Which then causes my son to be more likely to shut down & start ignoring staff and by default no work gets done.

My son is proud of his dogs. He loves when people stop us on walks to ask about them.  He is much better at letting others check out the dogs & pet them.  He has a few books about Puggles & Chihuaha's so he can learn as much as he can.  He loves watching Dogs 101 on The Animal Planet. I think he's watched the episode on designer dogs 100 times!  He likes to collect items to donate to the rescue group and the county animal shelter. (It helps that the mom of one of his Cub Scout buddies is the manager at the county animal shelter.)  Even if he goes into a situation where he would be overwhelmed, if there is a dog in sight all is well. Having these dogs has helped with some of his social skill deficits--the dogs are an opening to meet and talk with new people. Both are cute (if I do say so myself) so they often attract attention.  They are good sensory tools since they are warm, weighted, and really soft. My son has learned more about responsibility and empathy. He has even started 'preparing' the dogs for vet visits (reminding them when we are going, what will happen and that it will all be okay).

While he has shut down & ignored teachers & other therapists. He always makes time for the dogs. He laughs a lot more because of the dogs. He talks more because of the dogs (even if it is about the dogs).  He has drastically improved is reading out loud. (The dogs don't criticize they just love him & (usually) listen.) The dogs have even helped my mom to heal a bit from my dad's suffering & dying. (I strongly suspect that she has had many conversations with Roxie, but Roxie won't tell me what she has said. :) 

Wednesday, June 16, 2010

The fine line, my fear..

There is a fine line between preparing my son for upcoming events & feeding into his obsessions.  My son really wants braces. He has an urgent orthodontist appointment that I have to pick him up from school early for this afternoon.  All morning long my son was obsessed wit what he would be doing at 1:30 today. I'm afraid he'll be so obsessed with going to the orthodontist that he won't do any work in school.  I warned him that I would CANCEL the appointment if he didn't have any work done by the time I picked him up.  Fortunately he knows that I follow through.  I have to pick him up in a few minutes so we shall see...

I guess my son is really my son as from the time I was 7 1/2 I really wanted braces too. I'd even make my own out of tin foil.  I didn't want them so much when I got my early intervention braces at age 8. I REALLY didn't want them any more when I got a palatal expander & braces at age 11.  He has no idea what he is in for.  Sorry dude, you got my teeth and it seems most of the orthodontal problems of the rest of our family. 

My try at a not-so-Wordless Wednesday post..

So I have a few words. Been rough lately, but then I look at my pictures, and it feels better. We took a hike at the local county park & Little Boy Blue was walking ahead with my aunt.  I get to the beach at the end of the trail and look what I found. My son had decided that Crocs were meant to be in the water. My cousin's German Shepherd wanted to join in the fun too. So pure bliss as my son swam out neck deep playing tag & fetch with a German Shepherd that easily has 30+ pounds on him. When I asked him what he was doing he said "It's okay Mom, I'm a swimmer now" Guess all those lessons at the YMCA have paid off in nothing else but personal confidence. :)

He was a bit wet when he got out, but he was so happy.

With an enticing view like this, who could blame him?

It's looking at pictures like this that make life seem a little less demanding & stressful. Good memories are therapuetic.

Thursday, June 10, 2010

Update to mom driving me nuts...

So I picked up my mom this morning. I didn't feel like driving the 30 minutes to the doctor by myself. Plus she'll just sit home and feel sorry for herself so I took her for the ride. Plus I promised we could hit Super Walmart on the way back so she could get cheap soda.

I told her about the questionable absence seizures.  She remembers I was about Little Boy Blue's age when I had seizures. (Darn phenobarbital, one of the only drugs available at the time, it was horse pill only and TASTED AWFUL).  I told her he needs a multi day video EEG session.  Not a comment. No nastiness. No you talk too much. I think she realizes that there is SOMETHING going on.

We talked about the alternate schools. She complained about my driving. (She always had from when I was a teenager with a learner's permit. She doesn't like driving. Which is good for me as I can't stand her driving it makes me car sick). We talked about how stupid his school has been lately. She asked if I complained to the school. (I haven't. I just laugh at the stupidity.) She asked about summer plans. She for some reason feels an absolute need to go somewhere. Whether it is to VA to see my sister and her boys or to Six Flags.

I explained to her about the social skills group, Cub Scout camp, swimming lessons, kickboxing, occupational therapy & physical therapy.  We'll have time to do stuff.

And it was all okay. But then isn't it always okay.

My mom loves me. She just worries way too much. She misses her other children (who by the way are not coming 'home' again this summer and probably not coming for Christmas either. No one came last year for summer or Christmas) She misses her grandchildren.

But we have Blue. And we have my cousin's (who is more of a brother to me than my own brother) two children (a beautiful infant girl and an awesome toddler boy) only an hour away. She is their "K" and loves watching her own sister as Grandma.  The toddler loves my son.

It will be alright. And whatever the future brings, it will still be okay. After all she loves us (even if it is a bit much sometimes)


Wednesday, June 9, 2010

What to do when your mom makes you nuts?!?

So my mom, she's a great lady but she worries too much. Especially since my dad passed away & all my siblings ran away out of state, she is even more overprotective of my son.  She overcompensates for not seeing her other 6 grandchildren by spoiling my son. Not necessarily a bad thing.  I love my mom but she is also in the Dark Ages when it comes to medicine. She refers to diabetes as "sugar". She firmly believes that if you have surgery and cancer is found that you will die within days (apparently air makes cancer cells grow and kill you. If oncology was only that simple, they could just suffocate tumors and one would be cured!) She argues with me over my son's Asperger's diagnosis because he is "such a good boy" why am I "making things wrong with him"?!?!

When it comes to my son needing an out of district placement for school (something our advocate agrees with), she thinks it's because I "talk too much and tell them too many things." She fails to see that my son needs help and that he cannot get through life by having my mother as his only friend. (an exaggeration. He doesn't have many classroom friends but does have friends outside of school and those that are in one grade up or down from him). 

This past weekend my son went for a sleep study. He snores on occasion. His school work is suffering. He often complains of being tired and will easily fall asleep after school or on a car ride longer than a few minutes.  I discussed my concerns with the pediatric neurologist and we decided a sleep study was in order.  "Well I think your nuts. Why are you doing these things to him?" I gave up explaining it to her as she thinks I "talk too much."  I only want the best for my son. He needs to be able to function. Sleep is a requirement for life.  Many studies have shown the adverse physiological effects non-restorative sleep has on the human body.  I want my son to be healthy and happy.  Finally she agreed to walk the dogs.  My son was fine at the sleep study, he slept as well as he does at home and was able to be fully functional for his baseball game later that day.

When I observed my son in class last October he has these "staring spells" in school that strongly resemble absence seizures. They only last seconds. In school they interpret this as "defiant" behavior, being "oppositional" and "willfully defiant/disobedient".  It's like only a shell of him is there, like his soul was stolen for a while. To get him back I have to shout his name & shake him. The guidance counselor questioned possible seizure activity.  So in November when we saw the pediatric neurologist, I mentioned this concern and he was able to schedule a 1hr EEG for the same day. Of course nothing happened in that hour (not surprising as it is a "hit or miss" test) and the test was normal but not conclusive. He wanted to do a 48-72hr video EEG but it was nearly impossible to schedule.  Since the spells were infrequent, it wasn't that big of a deal.

I've noticed him "spacing out" with staring spells on occasion. It's very frustrating as it can look like he is totally ignoring me and being a royal pain. But I didn't think too much of it as no one else said anything.  They just continued to complain that Luke was ignoring them and staring into space. I just deal. When we saw the neurologist in May, we discussed it again and agreed that the video EEG could wait until scheduling would be less disruptive to life, but we would schedule the sleep study. 

His sleep has been getting less restful. We are still waiting for the results. Hopefully tomorrow.

Flash forward to yesterday.  The advocate went to observe my son in school.  She specifically noticed the "staring spells" they happened four times in the hour, his facial affect was flat, his eyes glazed over, mouth relaxed and opened slightly, completely oblivious to the universe for about 20 seconds. This is exactly what I have witnessed (and saw the night before).  After 20 or 30 seconds he would respond to my calls or touch, usually return right back to what he was doing.  So I called our primary doctor, she said go to ER at the children's hospital (90 min away). I didn't like that answer so I called the pediatric neurology office.

The nurse said what I described sounded exactly like "staring spells" also known as absence seizures. She contacted the neurologist.

And I waited.

This afternoon I got the call.  He wants a 48-72hr video EEG.  Great. Nothing to do in the mean time except to document the "staring spells" as I witness them. (This I can do)

Crap. 2-3 days at the children's hospital.  This means I will have to tell my mom.  Crap again. "You talk too much." "I don't agree with this." "You're making things up." "Why are you doing this to 'my baby'?" Mind you my son doesn't really care. If he can read, draw, eat, watch TV, and maybe play games he's cool with this.

And maybe we'll have an answer.

But I really don't want to discuss this with my mom. She'll argue with me. She'll say that I'm making things wrong with him. But she said that about his incontinence and nearly two years after we first went to the pediatric urologist we have a diagnosis & treatment plan and the medication IS working. Even if she thinks I make it up.

But if I was that hysterical mother that my own mother makes me out to be, then why are the doctors listening to me, ordering tests, diagnosing & treating my child????

What now will she refuse to watch the dogs for a few days? She can even leave them at my house & just stop by to feed, water & walk them...they both survive just fine when I was working.

Why must my mother argue with my (in front of my son) about everything that I do?  Oh and I'm not supposed to talk or cheer for my son at baseball games, she actually refuses to sit next to me because I call out to my son when he zones out so he doesn't get beaned in the head with a baseball.  Jeez.

I wish one of my crazy siblings would move back her with their kids to spread the blame...and the grandma.

I do think she projects about medical stuff a lot more after our ordeal with my father.  She won't even set foot on hospital property. I got over it. I just don't go back to the hospital that killed my father (essentially--but that's another story).  She always was wary of medical "stuff".  She doesn't want me to have surgery because she's afraid of surgery. She wouldn't come to the hospital with me when my son had surgery last year.  But that's okay. I understand that she hates hospitals.  So did my dad... I was hospitalized a lot for my asthma as an adult. The only time he ever came into the hospital was not the time I nearly died & was intubated it was to visit my son on the day he was born.  He even came in to pick us up at discharge.

So now how do I deal with this?  What do I say to my mother without getting into another accusation fight?  She thinks I make this stuff up.  She thinks all the world's ills can be cured with Tylenol and penicillin, with maybe some Valium as needed.

I have to tell her as we'll be gone for 2-3 days.  But what do I say to avoid the fight?

Friday, June 4, 2010

Expressive language & storytelling..

Both the school and outpatient speech & language pathologists have confirmed what I already know that my son has an expressive language & pragmatic language disability.  It's not surprising with SPD/ASD.  But for some reason the school SLP are unable to articulate to his teachers what that means.

It explains why writing in his journal is such a battle.  He doesn't have the skills to plan an essay or brainstorm a topic.  The big "problem" this past week was storytelling.  A week ago Wednesday my son's class went on  a field trip to a science museum in Philadelphia, about 75 minutes away if there's minimal trafffic. He had a fine time, nearly every parent went as a "chaperone". He loved when he got to touch the snake & terrapin. (He was dragging right before that & perked right up when Touchy McToucherson had an opportunity to be in the hands on area and touch animals).

Flash forward to last Friday. The class assignment was to write a story about their visit. The topic sentence was prewritten.  The first question was "How did you get to the museum?" (Other questions were what did you see, what did you like best & would you go back).  What did my son do?

He got stuck in the first question. "We took a bus to the museum. IT TOOK A VERY LONG TIME."  The bus ride was hard for him (both ways).  And he got stuck. No amount of prodding or pushing was going to change that.  So they sent the worksheet home (5/28). We worked on it over the weekend. Since I was there (and the souveniers were home) I could help encoruage ideas.  It was tough, but he did it. He listed his thoughts rather than write sentences because once the block was moved the memories came flooding out.

No school Monday so we sent it back on Tuesday 6/1.

(They actually wanted to know why I sent it back "so late", ummmm did you want me to drop it off on Saturday?  Sheesh!)

So Wednesday they gave him a nice blank piece of paper (very daunting to a child with sensory and expressive language difficulties) and told him to write his story.  (Nice thought, but again he is seriously lacking in these skills.  Apparenlty the thought is to nag him into compliance. It backfires everytime) They claim they spent THREE hours trying to get him to write the story.  Give the kid a break. Seriously if he was "willfully" being "defiant and oppositional" don't you think he would have caved by then?!? Do you seriously think he wants to be ostracized? It's not that he WON'T do the work but that he doesn't have the skills to do the work so in effect he CAN'T do the work.  It's painfully obvious that he lacks expressive language skills unless he is talking about rocks, dogs, weather, animals, dinosaurs, Legos or a select few other subjects.  They have actually complained that they will try and avoid his favorite subjects so they don't have to hear about it anymore.  Even better they then complain that if not speaking about a favorite subject he won't talk to them!

Ultimately he wrote the story (handwritten) sitting next to me on the couch. With only a few reminders, prompts, and help with a few spelling words, he even wrote more than he was required to.  I would not give him the sentences so these were his own words. (Written in the same speech he uses.)

What next, are they going to accuse that I wrote it for him? I couldn't write like him if I tried...and  I don't write in the same style as my son. 

He is a horrible storyteller at this time. And you know what? That's okay.  He is a pronoun abuser, but he is improving. I just remind him that I don't always know which "that" "there" "thing" "him" or "she" he is talking about.

Sure I am more willing to make accommodations because he is my child. But I am not a professional educatior or speech & lanugage pathologist working in an elementary school.  Why can't these people understand that some of there expectations are higher than his level of skill?  Even his baseball coach (a non-teacher) can figure out how to "get to him".  Why can't those responsible for my child's 'formal' education do the same?

Thursday, June 3, 2010

So out of district it will be...

We have decided (my mom, our special ed advocate, and me) that out of district is the best choice for my son.  He needs to be removed from his toxic environment that is his present small school.

We are looking for a specialized Autism Spectrum class in a neighboring district (that currently has no slots but may in the fall), this would be the best option.  We went on Friday to visit an out of district self-contained special education private school.  While the private school would be a good fit for my son, it is overkill. We are all in agreement that if the choice is the small private school vs. where he is now, the private school wins hands down.

I agree my son needs ESY OT & social skills but social skills is not an option for ESY (except for the compensatory services as they dropped the ball by not following his IEP for social skills counseling. Mostly because the case manager from hell (CMfH)  failed to let anyone other than herself know it was added to the IEP. I WILL NEVER MAKE THE MISTAKE OF SIGNING AN IEP PRIOR TO SEEING THE FINAL DRAFT!) He is excelling academically so there is no need for a full ESY this summer. 

Today is our third "annual" meeting.  The meeting that I was told in no uncertain terms wasn't going to happen at the second annual meeting.  (I have this on tape. She was going to have the "team" meet but forgets that by federal law I am part of the "team".)  I still have no idea who the mystery "other" listed on the meeting notice is, but that is not shocking. CMfH rarely reads my letters.  I will be taping the meeting again.

Fortunately for all of us, our prayers were answered and our special ed advocate will be in attendance.  Her mom needed an urgent cardiac cath and was rather ill, but prayers worked & her mom did very well.  The advocate was not able to observe my son in school due to her own mother's illness but it's not really an issue.

Our primary goal is to get my son in a more positive, more appropriate environment.  Even my son is ready. He knows he's in a bad situation.

So where will my little boy blue end up?  Well I will try and post after the meeting. Of course CMfH says that I'm the one holding up the process as I wasn't prepared to sign with no information about the school. In a few hours I'll know more.

On a positive note, the resource room teacher is finally giving my son the same classwork (modified) as the "regular" 2nd grade class. My son is T-H-R-I-L-L-E-D.  He feels more challenged. The resource room was using units that were 3-4 months behind the "regular" class.  Since he is in the classroom for part of the "regular" lessons he was getting frustrated to go to the resource room and go back to the stories the "regular" class did months ago.
PS--it seems my gut instinct about the other private school suggested was right. His behaviorist confirmed that this other school is for more profoundly disabled students. Being a semi-verbal, high functioning child he would regress or worse in that placement.  Sometimes my MOM-DAR is awesome.

And the record is...

I think my son had 1,529 questions about weather, thunder, lightning, rain, wind & tornadoes last night. He has an illogical fear of tornadoes (stems back to Elmo's World on Sesame Street, he was deathly (and still is) afraid of the tornado that visits Elmo in the episode about weather.  (we're talking screams, terrified look on his face, hiding under whatever cover was available).  I use this when I need to explain to my son why I don't like something. You know how you feel about Elmo's tornado? Well that's how I feel about _____.  The Martians from Sesame Street still give me the willies (aka the "Yep Yep Guys"))

Anyhow for years I have been prepared for the why questions.  I have a strong science background & I am great at researching what I am not sure about.  (For the record, cows DO have voices as they have a larynx (voice box).  Giraffes are the only mammal that does not have a voice box.) But due to my son's limitations in pragmatic and expressive language I was lucky to get a one word answer about any question.

While the average child starts with their why questions around 2 or 3 years old, my son held off until 7.

However he did exhaust me on the 20+ minute ride home.  Does it ever rain in one place and not another? Why is there thunder? What makes lightning? Can we get hit by lightning in the car? Why is there no swimming at the Y when there is a storm? Did the pool area always have metal walls? Why do branches fall off the trees? Why do they talk about wind damage? Why can't we see thunder? Why can't we see wind? Is it storming at Grandma's house? Is it storming at cousin's house? Why doesn't the wind pick me up? Why when I fly a kite do I not get off the ground? Do you think if I have enough balloons I could fly? Are those swirly winds a tornado? Why do they name storms? Why are some girls and some boys? Why don't they name winds? Why don't they name tornadoes?  Do you think they could name a tornado after Roxie? What about naming a storm after the dog? Would a tornado be strong enough to carry Oscar (the chihuahua) away? Would it take me too? Why is it raining hard here and not at the corner? Why don't I like tornadoes? Do you think we'll have a tornado tonight? Will the lights go out? The neighbor's light is on are our lights still on? Why does wind whistle? Do you think we'll have a tornado tonight? Why did the weather man say it would storm tonight and not tell me the time? Why does the weather man not know what time it will rain? What if the weather man is wrong and it rains in the afternoon? (and these are not all the questions I was asked)

His biggest fear is of power outages.  Talk about panic attack & sensory overload.  I had to remind him we had that new battery operated lantern from our camping trip that would light the whole condo up (and it would) if the power went out and that his therapeutic listening (TL)  CD player works off batteries too. 

Last time we had a power outage our whole small town was out due to someone crashing into the transformer that powered our area.  I think my son shook for 2 hours straight. He kept falling asleep with his classical music TL on then waking up saying "how did I fall asleep>" I had candles, but he had to lay next to me. He needs something to touch and I couldn't find his piece of satin, so I had to give him some ribbon & my arm.  What a mom won't do for her child. I HATE the way it feels when he rubs my arm, but it grounds him & calms him. Rubbing my hair doesn't bother me, but rubbing my arm makes me ill. But I let him.
He got himself into such a frenzy about the power outage last time that he was nonfunctional for the next three days. (Yet ANOTHER complaint from the school.  They don't believe me how strong he reacts to power outages--almost worse than fire drills (and they have seen him during fire drills, that look of pure terror on his face))

After we went home & took the dogs out, I declared a moratorium on speaking. (I was getting overloaded. Sure I can answer the questions, but I was driving in a thunder storm with heavy rain so I was super-multitasking mom.)

But in the end I am still happy to FINALLY have the questions from my son.  It's about time!