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)
thanks.
Thursday, June 10, 2010
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?
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?
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.
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!
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!
Friday, May 28, 2010
Why "Eat More Chikin" is funny...
Pragmatics is so NOT my son's strong suit. Expressive language & pragmatics are two areas where he is seriously lagging. It is almost funny when he tells a joke. He laughs because he knows it's supposed to be funny but literal boy doesn't get the joke. Sometimes it's not worth explaining.
We went to an event where Chick-fil-a had a booth. They gave my son a miniature of their cow mascot. The cow holds a sign that says "Eat More Chikin". So the conversation goes like this...
Blue "This cow is cute, but why is it holding a mispelled sign about chicken."
Momzilla (driving) "It's a joke Blue, but do you get it?"
Blue "Hmm, no."
Momzilla "Where does chicken come from?"
Blue "Chickens!"
Momzilla "What is made from cows?"
Blue "Milk!"
Momzilla "Cows make the milk, not milk is made from cows. Okay let's try this what is McDonalds famous for?" (thinking of the billions of burgers sold)
Blue "Chicken McNuggets"
Momzilla (okay I'll try something else) "What is BURGER King famous for?"
Blue "umm, burgers?"
Momzilla "Right! Now where do burgers come from?"
Blue "Pigs"
Momzilla "No. Pork comes from pigs, and so do some hot dogs & sausage. Try again. Where do burgers come from?"
Blue "Cows?"
Momzilla "Right! Now why do you think the cows have a sign that says "Eat More Chikin"?"
Blue "Because chicken is good."
Momzilla "Okay let's try this, if the people eat only chicken, will they have room left to eat burgers?"
Blue "I guess not."
Momzilla "So if people don't eat burgers, what will happen to the cows?"
Blue "I don't know"
Momzilla "No need for beef, no need for cows to be slaughtered. Now what would be the same kind of funny for Burger King to have a mascot?"
Blue (really excited now) "A chicken with a sign "eat more beef"!!?!"
Momzilla "Exactly! Now why is the Chick-fil-a cow funny?"
Blue "Because if you eat more chicken they won't turn cows into burgers."
Momzilla "Nice job dude."
The above conversation took about 20 minutes. He understood that the cows & chickens aren't alive when he eats beef or poultry. A few minutes later...
Blue "Hey mom?"
Momzilla "What bud?"
Blue "Do cows die when they make milk?"
Momzilla "No bud. They really make milk as mommy milk for baby cows. The extra milk is treated so humans can drink it."
Blue "Are you sure?"
(My cousin's wife is breastfeeding their 2 month old daughter so he's a bit familiar with the concept as much as a 7 year old should be. He knows he was given "Mommy Milk" when he was a baby since it was what was best for him. We still laugh how my (now late) father refused to call it breast milk, it was always Frozen Mom Milk. )
Momzilla "What does Aunt C do after she feeds the baby mom milk? "
Blue "she burps the baby"
Momzilla "Is Aunt C okay after feeding baby?"
Blue "Yes"
Momzilla "Well cows are okay after they make milk whether it's for their baby calf or for the milk factory. Just like Aunt C. Okay?"
Blue "Okay. I like my new cow. I'll call him George."
Momzilla "You know cows are girls and bulls are boys right?"
Blue "I'm still calling the cow George"
Whatever...
We went to an event where Chick-fil-a had a booth. They gave my son a miniature of their cow mascot. The cow holds a sign that says "Eat More Chikin". So the conversation goes like this...
Blue "This cow is cute, but why is it holding a mispelled sign about chicken."
Momzilla (driving) "It's a joke Blue, but do you get it?"
Blue "Hmm, no."
Momzilla "Where does chicken come from?"
Blue "Chickens!"
Momzilla "What is made from cows?"
Blue "Milk!"
Momzilla "Cows make the milk, not milk is made from cows. Okay let's try this what is McDonalds famous for?" (thinking of the billions of burgers sold)
Blue "Chicken McNuggets"
Momzilla (okay I'll try something else) "What is BURGER King famous for?"
Blue "umm, burgers?"
Momzilla "Right! Now where do burgers come from?"
Blue "Pigs"
Momzilla "No. Pork comes from pigs, and so do some hot dogs & sausage. Try again. Where do burgers come from?"
Blue "Cows?"
Momzilla "Right! Now why do you think the cows have a sign that says "Eat More Chikin"?"
Blue "Because chicken is good."
Momzilla "Okay let's try this, if the people eat only chicken, will they have room left to eat burgers?"
Blue "I guess not."
Momzilla "So if people don't eat burgers, what will happen to the cows?"
Blue "I don't know"
Momzilla "No need for beef, no need for cows to be slaughtered. Now what would be the same kind of funny for Burger King to have a mascot?"
Blue (really excited now) "A chicken with a sign "eat more beef"!!?!"
Momzilla "Exactly! Now why is the Chick-fil-a cow funny?"
Blue "Because if you eat more chicken they won't turn cows into burgers."
Momzilla "Nice job dude."
The above conversation took about 20 minutes. He understood that the cows & chickens aren't alive when he eats beef or poultry. A few minutes later...
Blue "Hey mom?"
Momzilla "What bud?"
Blue "Do cows die when they make milk?"
Momzilla "No bud. They really make milk as mommy milk for baby cows. The extra milk is treated so humans can drink it."
Blue "Are you sure?"
(My cousin's wife is breastfeeding their 2 month old daughter so he's a bit familiar with the concept as much as a 7 year old should be. He knows he was given "Mommy Milk" when he was a baby since it was what was best for him. We still laugh how my (now late) father refused to call it breast milk, it was always Frozen Mom Milk. )
Momzilla "What does Aunt C do after she feeds the baby mom milk? "
Blue "she burps the baby"
Momzilla "Is Aunt C okay after feeding baby?"
Blue "Yes"
Momzilla "Well cows are okay after they make milk whether it's for their baby calf or for the milk factory. Just like Aunt C. Okay?"
Blue "Okay. I like my new cow. I'll call him George."
Momzilla "You know cows are girls and bulls are boys right?"
Blue "I'm still calling the cow George"
Whatever...
An epiphany of acceptance...
So Wednesday morning I woke my son up at 5:30 AM so we could prepare for the big field trip to Philadelphia. We had to be in his classroom no later than 7:15AM. It was an interesting trip, not bad, but interesting. When my son was asked to be a "storyteller" and write about the trip he had a difficult time. He got "in trouble" for this, but really they clearly don't understand my son's limitations and his lacking/lagging skills. So the worksheet got sent home. The first question was "How did you get to the field trip?" His response, "on a bus. it took a VERY long time" And then he was stumped. He was so fixated on the fact that it was a 2+ hour bus ride due to traffic that he couldn't remember anything but the rocks he saw in the gift shop. The next question was to list three things that he saw at the museum. He was stuck on the rocks. He really wanted to write that he saw rocks, but he knew that wasn't the correct answer. He wasn't able to articulate what he was 'stuck on' and why he couldn't write more. Since I went with him, his 1:1 got the day off so she couldn't prompt him. When he got home, he was clearly frustrated about this "storytelling" assignment. It's clearly out of his skill set for his Asperger's brain. At school this is interpreted as "defiant" and "oppositional", when in fact my little boy blue is just frustrated and confused. He wants to comply and conform but he just has no idea how to.
This morning I took my mom & our advocate to visit a private self-contained special education skill and learned what could be. I also received information about a nearby district's autism program. O M G my poor boy is being tortured. They clearly don't know what they are doing in his school though they all claim to have taught Asperger's kids & Autistic kids before. I was told "All Asperger's kids that I (the speaker) have worked with are compliant and respectful to authority." (On a side note I called a local autistic parents network, the person whom I spoke with was a BCABA behaviorist. I told him the above and a few other choice comments that were made at my son's IEP meeting. The poor guy had to put the phone down he was laughing so hard. He couldn't help me as their group is more for early intervention and more profoundly autistic families but referred me to another agency. He also asked me the name of my son's school district so they might offer some training and education. :) ) While the small private school was very small (about 60 total students ranging in age from 5-21), it was clearly a positive environment with well defined boundaries and most of all consistency. At home I am consistent, but flexible, many options are negotiable some are not (such as safety--no bike or scooter without a helmet). Then in talking to another close friend who's daughter stayed behind a grade, we had an epiphany. While the "toss him out of the district" was initially hard to hear, it may actually be a blessing in disguise. I taped the IEP meeting, it is entertaining and cyclical. These people have clearly never met a truly Asperger's child. My kid is often a text book Aspie. He has social deficits. He has serious issues with pragmatic language, expressive language, and reciprocal communication. He is very bright and when in the proper environment he clearly excels academically. He is a wonderful reader.
So back to my friend, her daughter repeated K. She said that aside from my son (who in K only spoke through her daughter, occasionally directly to the teacher), her daughter really didn't have any friends their class. Leaving her behind was a great choice, and now though older than her classmates she has several good friends. I thought and noticed that my son is better friends with 1st graders & 3rd graders than he is with his peers in 2nd grade. Sure their "friendly" but they are not friends. He has plenty of friends from camp, swimming, Cub Scouts & baseball that are 2nd graders. So it seems there might be something in the water that affects his class. They are a, well, unique lot.
While I think the small private school would be appropriate for him, I think a larger environment (like the neighboring district) with more opportunity for inclusion with his non-disabled peers would be better. If the potential for interaction with non-disabled peers is not available, than the small private school is a much better choice than his current school. It seems that his current school has already made up their mind about him. They refuse to listen to scientific reasoning or reports from actual board certified experts. They'd rather listen to a "case manager' who "took a class in ABA, once" as their defined expert. (it has been confirmed that there are MANY other parents who have serious issues with this 'case manager')
I think the best decision I can make for my son is to get him out of his current toxic environment & into a structured, loving environment. Being Honest Mom, I discussed this with my son. He's been thinking about it, his biggest worry was missing out on the after school sports program that starts in 3rd grade. (Not an issue thanks to the IDEA). He then asked me "what if I like the new school, do I HAVE to go back to my (current) school?" I just smiled and said one step at a time. It made my decision easier as clearly my son knows that he deserves to be treated better.
So now my big decisions are: 1. WHICH school is a better choice than where Blue is now? 2. Fight over ESY. Up until now the big push was for ESY OT and social skills (via camp). As of the last IEP meeting (which I taped) camp was no longer an option. They wanted ESY at the new school so that Blue "could acclimate and easily transition to his class in the fall." Horse poop! He's got a filled summer schedule with a variety of activities. He has NEVER regressed in academics except for first grade math and that regression occurred DURING the school year, not break, because of a crappy teacher. He is at or above grade level for reading & language arts. They don't do social skills in ESY. But he is going to scout & sport camps this summer with kids he is appropriately social with. So I'll be fighting against this issue. I have no intention in signing the release of records until I am ready, to which the nasty 'case manager' replies that "I am holding up the process." Well criminy you make this "team decision" without me in the fist week of May. Spring it on me the second week of May (having not investigated ANY schools). Then the last week of May threaten me with 'legal action' because now you have two schools that I have never heard of and want me to give you carte blanche with my son's records. Ah no! Quite frankly lady, I don't trust you!
I'm going to go with my gut feelings on the school selection.
My main "concern" is that the parents are a bunch of gossip mongers. So are staff. Staff are prohibited by Federal Law to release information about my child's placement without my consent. I don't have to worry about my son saying anything. But what would be a good response to the parents (and students) when they realize my son is not returning. Of course this isn't until fall... he sees a couple of the boys in outside activities (and one is a total nag for information). My current practice conversation..
Nosy Parent... "So Little Johnny has told me that Little Boy Blue didn't come back to the 3rd grade class, what happened?"
Momzilla..."it is what it is"
Nosy Parent..."???"
(hopefully they'll get the clue that it isn't any of their gosh darn business and I have nothing to say.)
So what do you think?
This morning I took my mom & our advocate to visit a private self-contained special education skill and learned what could be. I also received information about a nearby district's autism program. O M G my poor boy is being tortured. They clearly don't know what they are doing in his school though they all claim to have taught Asperger's kids & Autistic kids before. I was told "All Asperger's kids that I (the speaker) have worked with are compliant and respectful to authority." (On a side note I called a local autistic parents network, the person whom I spoke with was a BCABA behaviorist. I told him the above and a few other choice comments that were made at my son's IEP meeting. The poor guy had to put the phone down he was laughing so hard. He couldn't help me as their group is more for early intervention and more profoundly autistic families but referred me to another agency. He also asked me the name of my son's school district so they might offer some training and education. :) ) While the small private school was very small (about 60 total students ranging in age from 5-21), it was clearly a positive environment with well defined boundaries and most of all consistency. At home I am consistent, but flexible, many options are negotiable some are not (such as safety--no bike or scooter without a helmet). Then in talking to another close friend who's daughter stayed behind a grade, we had an epiphany. While the "toss him out of the district" was initially hard to hear, it may actually be a blessing in disguise. I taped the IEP meeting, it is entertaining and cyclical. These people have clearly never met a truly Asperger's child. My kid is often a text book Aspie. He has social deficits. He has serious issues with pragmatic language, expressive language, and reciprocal communication. He is very bright and when in the proper environment he clearly excels academically. He is a wonderful reader.
So back to my friend, her daughter repeated K. She said that aside from my son (who in K only spoke through her daughter, occasionally directly to the teacher), her daughter really didn't have any friends their class. Leaving her behind was a great choice, and now though older than her classmates she has several good friends. I thought and noticed that my son is better friends with 1st graders & 3rd graders than he is with his peers in 2nd grade. Sure their "friendly" but they are not friends. He has plenty of friends from camp, swimming, Cub Scouts & baseball that are 2nd graders. So it seems there might be something in the water that affects his class. They are a, well, unique lot.
While I think the small private school would be appropriate for him, I think a larger environment (like the neighboring district) with more opportunity for inclusion with his non-disabled peers would be better. If the potential for interaction with non-disabled peers is not available, than the small private school is a much better choice than his current school. It seems that his current school has already made up their mind about him. They refuse to listen to scientific reasoning or reports from actual board certified experts. They'd rather listen to a "case manager' who "took a class in ABA, once" as their defined expert. (it has been confirmed that there are MANY other parents who have serious issues with this 'case manager')
I think the best decision I can make for my son is to get him out of his current toxic environment & into a structured, loving environment. Being Honest Mom, I discussed this with my son. He's been thinking about it, his biggest worry was missing out on the after school sports program that starts in 3rd grade. (Not an issue thanks to the IDEA). He then asked me "what if I like the new school, do I HAVE to go back to my (current) school?" I just smiled and said one step at a time. It made my decision easier as clearly my son knows that he deserves to be treated better.
So now my big decisions are: 1. WHICH school is a better choice than where Blue is now? 2. Fight over ESY. Up until now the big push was for ESY OT and social skills (via camp). As of the last IEP meeting (which I taped) camp was no longer an option. They wanted ESY at the new school so that Blue "could acclimate and easily transition to his class in the fall." Horse poop! He's got a filled summer schedule with a variety of activities. He has NEVER regressed in academics except for first grade math and that regression occurred DURING the school year, not break, because of a crappy teacher. He is at or above grade level for reading & language arts. They don't do social skills in ESY. But he is going to scout & sport camps this summer with kids he is appropriately social with. So I'll be fighting against this issue. I have no intention in signing the release of records until I am ready, to which the nasty 'case manager' replies that "I am holding up the process." Well criminy you make this "team decision" without me in the fist week of May. Spring it on me the second week of May (having not investigated ANY schools). Then the last week of May threaten me with 'legal action' because now you have two schools that I have never heard of and want me to give you carte blanche with my son's records. Ah no! Quite frankly lady, I don't trust you!
I'm going to go with my gut feelings on the school selection.
My main "concern" is that the parents are a bunch of gossip mongers. So are staff. Staff are prohibited by Federal Law to release information about my child's placement without my consent. I don't have to worry about my son saying anything. But what would be a good response to the parents (and students) when they realize my son is not returning. Of course this isn't until fall... he sees a couple of the boys in outside activities (and one is a total nag for information). My current practice conversation..
Nosy Parent... "So Little Johnny has told me that Little Boy Blue didn't come back to the 3rd grade class, what happened?"
Momzilla..."it is what it is"
Nosy Parent..."???"
(hopefully they'll get the clue that it isn't any of their gosh darn business and I have nothing to say.)
So what do you think?
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