Friday, November 4, 2011
Certain things in (our) life are not up for discussion or optional. Such as wearing a helmet when biking, skateboarding, or scootering; wearing a seatbelt in a moving vehicle; being polite at least with please and thank you; respect.
Other things are optional--there is more than one way to complete a math problem or construct a sentence. Art has so many variables it's hard to make an incorrect choice.
Homework is necessary but it's not worth the battle of wits...sometimes. As my child's mother I've gotten better at finding the source of the stubborn. Once we were both overtired, and nearly in tears over homework; just shy of blowing my top I didn't know what else to do to get through to my child. I caught myself and did the first thing that popped into my mind. (No, I didn't beat the peanuts out of him) I hugged him and told him I loved him. While hugging him he let out a big sigh, then passed out. Turns out the battle was not over homework but a battle fighting the inner demon of pure exhaustion. He was so tired he couldn't funciton. So tired he couldn't communicate except to pretend to do his homework and argue with me. For a second there I was worried that my son was developing some type of bizarre behavior problem but alas, it was just a difficult night of insufficient sleep (much to my relief).
My son has two scenarios that can make him pretty bizarre and odd, and if I'm not intuned to the situation I (and others) can cause an escalation of bad "behavior". For one: lack of sleep, lack of restful sleep, or exhaustion from a busy day. When he's overtired he can be pretty odd, making rather bizarre requests (such as asking for purple spaghetti with peanut butter for dinner) or actions (licking his pencil if trying to avoid homework).
The other: prodromal illness. Before spiking a fever he's pretty bizarre, he'll be very cool with cold hands. He won't talk, he'll actually look like he is in sensory overload without any obvious overstimulation. Then about an hour or so later he'll spike a temp of at least 102F. (It also happens when he's ill between doses of Tylenol or Motrin, just as the medication is starting to wear off the temp hasn't gone up but he starts acting wierd.)
This happened recently. My aunt went bonkers when he wouldn't respond to her (not that he spontaneously talks to anyone unless he has something "important" to say), he didn't turn his back but was hyperfocused on his Legos. We had already planned an early exit as it was a long day. My aunt was pretty upset, made several snide almost hurtful remarks. Fortunately my son totally tuned her out. Later when we got home his hands were freezing and he started to feel warm. Low and behold 101.5F at the first temp.
Other times I need to be aware of simple stubborness and avoidance. Not exactly atypical for a 9 year old child. But sometimes he just doesn't feel like to doing something (like math homework) and knows just what to say to make me cuckoo. Sometimes being a single mother definitely has disadvantages such as stubborn homework refusal nights. I have resorted to what some consider "bribes" but I consider negotiation or positive reinfocement with tangible results. I have to determine if the issue is frustration (not comprehending the assignment or an assignment that is beyond his cognitive capabilities), if my son has psyched himself out (thinks it's going to be difficult so he avoids the work to avoid frustration), or if he's just being a pain in the heiny 9 year old. But battle isn't always necessary in these scenarios. I knew full well that my son had the capabilities to work on his multiplication, he just thought he couldn't do the work.
So I challenged him. I found similar worksheets to the one he was assigned. we had 60 seconds to complete as many as possible. (Apparently I can complete 100 multiplication problems in less than a minute. GO ME!) First he watched me and how I analyzed the page for patterns in the problems to quickly solve the equations. Then we battled. He got his 25 problems done in 60 second to see if he could finish his work before I finished mine. We laughed. We worked. He got to check my answers while I checked his. Work done, crisis averted.
When he has "super sentences" to write for grammar or spelling he is near ready to melt. I scribe his ideas and then he rewrites the sentences. (it's rather obvious who comes up with the sentences :) ) Sometimes he hits a roadblock and gets frustrated...so I will create the sentences my way for him. (he he he) like "I am getting frustrated with the homework assignment from Mrs. B son instead I've decided to abscond with all the cookies from the kitchen and eat them." He's too busy laughing at my sentences to be frustrated. He usually rewrites what I created in his own words because mine are too long or too silly/embarassing. I just remind him that I graduated years ago so I already have proven that I mastered the fourth grade cirriculum.
So the next time your Aspergarian is ready for a battle of wits and you are ready to pull your hair out, think is this battle worth it? Sometimes it is, but then again sometimes it is not. Quite often, a little silly is needed to diffuse the situation.
I was thrilled the first time I took my son to the American Museum of Natural History in NYC at age 4 and my son was totally mesmirized. He wasn't running around like a raging lunatic hyped up on sugar and excitement. He was fascinated by the displays of historical magnitude. (Later thrilled watching "A Night at the Museum" and seeing the same sights.) He developed an interest in fine art, "borrowing" my art history books to browse the pages. He decided that one of his favorite artists is Vincent Van Gogh and developed a particular affinity for Sunflowers and Starry Night.
When he was placed out of district it was a blessing in disguise. While last year's class was better than the home school, it wasn't perfect. On the positive side the new school had an art teacher. (Home school pushed the art teacher to retire at the end of the year so last year and this the homeroom teachers are expected to include art within their classroom teachings. Apparently that is not working out too well.) The art teacher was fascinated by my son's knowledge (of artists, various media and techniques) and skills. She his class to direct their projects, often suggested by my son. She was duly impressed with his ability to focus and function within the art studio.
One of the few times I had to go to school to pick up my ill child, a woman came running up the hall asking if I was my son's mother. I hesitantly said yes, afraid that it was going to be a negative meeting (much like at the home school where usually the negatives were listed the second certain staff members saw me at the door) but surprised when it was nothing but a glowing, proud gushing of my son's most positive traits and behavior and get this how my son was a total "pleasure" to have in class. I think I nearly fainted as I had been conditioned that teachers & staff seeking me out were often out to criticize my child or my parenting.
I didn't mind last year's class but it was a BD/ED class that was truly not the best placement for my Aspergarian with a math SLD, expressive communication difficulties, SPD, frustration and the occasional attention or anxiety issue. The children were more physical, prone to outbursts, and most had older siblings that unfortunately taught them some inappropriate "big kid" stuff. Plus their emotional development was beginning toward more external outbursts, whereas my son is more internal. More likely to pound his head in frustration or curl up like a turtle if overwhelmed. With such a diverse mix of students, I must say that Mrs. B & Mrs. J (in additon to the teachers in the room next door) were absolutely awesome and a true asset to their profession. Even the one day where they hit their maximum and the children's busses had all arrived early and they simply let them leave 10 minutes early (of couse with the permssion of the principal and a call to me so I'd be aware of the earlier arrival of the bus), they were totally professional. Of course it didn't help that the 1st-3rd graders were in a small room in the back of a school full of 5th & 6th graders. In 4th grade, the students are trial mainstreamed with the 5th graders for homeroom, art, music, etc thereby losing the 4th grade curriculum for art, music, phys ed, world language etc.
After a quick conference in late April, I was called by the child study team case manager asking if I would be willing to consider another change in placement. She had already spoken with the home school case manager and confimed that a self-contained environment was not available in the school (I already knew that had almost no special education services in the home school.) They wanted to have the team from the school next door (a preK-4) come evaluate my son for possible placement in the SLD or autistic class. When I made the visit and saw the autistic class I said "this is where he belongs, this is my child." (Fortunately everyone else on the team agreed.)
Over the summer my son was placed with the SLD/autistic students for ESY which happened to occur at the new school (big help for transition). Son was afforded the last slot in the autistic class which happened to be high functioning autistics & Aspergerians in 3rd & 4th grade. Weekly I get calls from his teacher or school staff, the first and last comment from his primary teacher is that my son's smile lights up the room. His primary autistic teacher works collaboratively with his homeroom teacher. (Three other students from the autistic class happen to be in his homeroom where he goes for art, music, phys ed, health, computers, Spanish, social studies/history, science, lunch & recess.) My son is happy.
I went to his class before Halloween to do a project. It was his teacher's idea so that I can not only see the classroom environment but also meet his classmates (a luxury I've not been afforded living out of district). A diverse group would be an understatment. Some have to be prompted to use words, others have definitively mastered their linguistic skills and love to show them off. Some are timid, some are more outgoing. Each has their own unique strength that they are genuinely proud of, and it is a beautiful thing.
All of the boys competed for my attention as I was the new person in the room. Proud to tell me that they like my son and play with him during sensory breaks & recess. Happy to inform me of their likes and favorite colors. Thrilled to help.
It seems my son was one of the few that were identified with special needs late. Most of the children had been in the self-contained classroom since early intervention. (We were ignored for early intervention as I worked full time, my then pediatrician didn't want to saddle my young child with a lable early on, the preschool didn't want to lose tuition by referring him to the early intervention preschool paid for by the state/county so they would dismiss my concerns insisting it was just a boy and boys are always slower than girls, the elementary school (specifically the principal) didn't want to provide services in kindergarten and in first grade were were saddled with a crappy IEP that wasn't followed by the 1st grade teacher with an inappropriate ADHD diagnosis, even the learning evaluation was flawed as part of the assessment was skipped due to a broken finger) Not only had my son been in a regular ed classroom but he is pretty active.
My son is a good sport (a difficult social concept for many children regardless of diagnosis). I think partly because of parenting and partly from having a really good soccer coach at age 4. He's athletic (swims at the Y, plays baseball in the spring, would love to play other sports but it is cost-prohibitive) which is grossly promoted by his Cub Scout leader who believes (and I agree) that 75% of scouting should be outing. He's been in Cub Scouts since first grade. He's gone to Cub Scout day camp and this past summer to the overnight Webelos Adventure Camp. He's active at church and CCD. He has a love for art that I try and encourage. He has a lot of empathy. He loves to help the underdog. (He was thrilled Halloween trick-or-treating this year. We had a visiting friend with a 2yo & 4yo who tired early on as they had a hard time keeping up with the big kids. My son took it up on himself to point the little ones out to the homeowners and get treats for the little guys when they were too tired to make it to the front door. Interestingly enough his buddy started to take turns at the different houses to get treats for the tired wee ones.)
While he as sensory difficulties, my son is a good eater. (He's actually influenced a few of his Cub Scout buddies to try some new foods.) He is definitely touch seeking, but his buddies in his autistic class are much more tolerant of his sensory needs as they have thier own.
So back to the point of this post...when I arrived at his classroom his teacher and a couple of the students were waiting. Son didn't divulge what we would be doing, so they had practiced saying hello and asking what we would be doing for a project. (We made mini cupcakes with my Babycakes mini Cupcake maker (note no product or stipend received for using this project) which was totally awesome. No oven needed, eight prefect mini cupcakes made right in the classroom in minutes. Minimal waiting for the glorious smell of fresh baked cupcakes much to the delight of the children in the class. They got to see the fruits of their hard work making the batter rather quickly) and handmade Halloween book marks complete with protective plastic sleeve). The children are working on learning to just "hang out" (a difficult skill to master) so it was pretty awesome when one boy sat on the edge of a table with legs swinging proud to show me that he was "hanging out". (The teacher said that was the first time this student spontaneously decided to "hang out" at school)
I watched how my son interacted with is classmates. Confident, comfortable. (Though he did have a small melt down at the end of the class that his teacher and I worked together to be consistent with our reaction.) I watched as the children were excited to show my son their progress on their bookmarks since it was clear that my son was skilled in papercrafting. The children alternated between stamping, glueing, and snacking on fresh cupcakes. Then she said it....
"You know (mom), they boys think that (son) is the cool kid. He has a lot of outside experiences (Scouts, sports, camp) and they want to emulate him." he he he, MY kid, the child of an uber nerd-geek, with social struggles is considered the "cool kid".
Thursday, September 8, 2011
looked like he was on his last fins earlier this year. Our resuscitation efforts were not successful. So off to the big box pet store to replace the Betta. It was “my turn” so I chose a bright blue /navy Betta fish. I had a really cool name for him, but sadly I’ve forgotten his name so we are in the process of coming up with a new name, so for now I will call him blue. Blue fish would hide in the rock or in the plants. He’d never hang out, to the point we’d search in the tank for him to make sure he didn’t jump out thinking he could fly or breathe. (a la Bob 3 who we found about 10 minutes after his inaugural flight dried out like a piece of jerky on the tile floor. ) So as time went on, Blue started hanging out a bit more. I thought I was going nuts, but it seemed when I’d come into the kitchen (Blue is presently residing in a tank on our kitchen counter. It works well for all since he’s near the sink and so far the crazy dogs haven’t tried to jump on the counter for a closer look like the did when Storm’s tank was in the living room) he’d start swimming around like crazy. I’d give him some pellets. Sometimes he’d be snotty and refuse to eat until I removed the pellets and give him his favorite freeze dried blood worms. But I thought it was a Pavlovian reaction to the light…seems I thought wrong.
While in nursing school, my mom would often come over and walk my dogs, feed dogs, then get my son off to school especially if I had to be at a clinical site by 6:30AM. I’d come back around noon. The dogs would feign starvation and the Puggle started to knock her bowl out of the stand to be sure I got the picture. (Puggle would also go nuts when she heard my mom’s ring tone when she called to let me know she was on her way so I could leave.) Then dogs would hear me call my mom to check if she fed the dogs…just in case they were actually really hungry and not just nutty con artists aiming for a second meal. As soon as they would hear, “Hi Mom, Did you…” they’d slink back to their rooms admitting defeat.
Son will often be on animal food duty. He usually feeds the dogs and gives Blue his breakfast too. Son noticed a few days later that, even though he fed the fish, Blue went whacko when I came into the kitchen and kept looking like Jawz in search of prey. Little bugger knew I was usually the one to feed him the bloodworms since although freeze dried son often won’t touch them to give the poor fish a pinch.
Seems that Blue wasn’t lacking in intelligence. He was scoping out the joint and trying to figure out which one of the giants would be more likely to give him his favorite food “upon request”. Little stinker. However it doesn’t seem like he has much of a sense of time since he’ll do the “I’m starving give me worms dance” more than once a day sometimes. Smart fish, he knows who will give him his favorite freeze dried blood worms and who won’t…
Another example, my Chihuahua is a bum. Most people feel sorry for the old guy since he only has one eye, but he’ll uses that to his advantage as soon as he hears the first “awwwe”, he knows he has a chance of being carried around like the prince that he thinks he is. My mom is the biggest sucker of all. Oscar would live perched in the front seat of my car for the rest of his life in the hopes of gaining a car ride if I would just let him. So although he is usually good off leash, especially at my mom’s house, he is likely to get underfoot if he sneaks out and follows me to the car. I was closing my hatchback when he got under me. I heard his squeal (which he does if he thinks no one is paying attention to him) as I stepped on him. I thought for sure I broke the dog’s leg. I was distraught, ran into my mom’s house nearly in tears carrying the dog. (Not before noticing he was limping holding up his right paw). So we put him down to see if he was alright. My mom with the sing songy “aww poor puppy”. Then I noticed it, he switched to limping holding his left paw up. The little stinker. My mom didn’t believe me. Oscar thought this was grand and let her carry him around, and snuggle on the couch. Later mom took Roxie for a walk while we got ready to leave. Boy had Oscar and was walking him in front. I wanted to see if my dog was still “hurt”, so I went to the edge of the laws and jingled my car keys. Oscar the injured took off like a greyhound in a race, running towards me in anticipation of the highly coveted car ride… Son and I were laughing, until we heard the screech, and the “aww poor puppy”. Oscar stopped dead in his tracks running towards the car when he caught sight of my mother coming around the corner with Roxie. Picked up his paw and cried. Son & I burst into laughter. Of course mom didn’t believe us and picked up the bum & carried him to the car. Smart dog, he knows who will buy his bad acting.
I’ve seen a lot of articles claiming that children on the autism spectrum (whether mild or severe) lack empathy and cognitive ability. Partially based upon the lack of or reduced communication skills. My son went for the first two weeks of 2nd grade refusing to speak in class if a particular (less than professional) aide was present. However, in watching the interaction of children on the spectrum, verbal or not, I wonder if the assumed lack of cognitive abilities is due to the child’s failure/inability to respond to assessments that require verbal replies or that the child “looks the investigator in the eye”? When he had his IEP evaluations, he nearly failed in speech and “psychology” because he shut down and stopped answering. Especially with one evaluator, he refused to even say “I don’t know” or “shake his head” he’s simply refuse to look at her. (She decided this was ODD/deliberate defiance/willful behavior rather than he had enough…she was recently proven 100% wrong in her assumptions.) Perhaps some of the non-verbal or limited verbal children are significantly more intelligent than the assessors decide. Perhaps these children are much smarter than us, and simply choose to not answer such banal questions that are often on the assessments. Perhaps the child is not being challenged because it is assumed that their cognitive functioning is much lower than reality?
I think the underestimating of a child’s abilities, especially those that are non-verbal or limited verbal, has been reduced by the introduction of technology such as using the iPad as an adjunctive communication device. It seems anyone who as bothered to watch the award winning HBO movie Temple Grandin or read any of Dr. Grandin’s books such as Thinking in Pictures, is more likely to be understanding that my Aspergarian child thinks differently (as do many other children). Why bother teaching “learning styles” in collegiate teacher preparation programs, if the teachers are not going to ever use the knowledge to educate their students in the classroom setting?
But the underestimation in the intelligence of others is often found in the health care setting. As a new graduate nurse, I am of the philosophy that a patient with a chronic illness or condition or the parent of a child with a chronic illness or condition, is the utmost expert on that particular patient. They may know the nuances of the condition in general, but they are the expert on their circumstances and nuances. Many in roles of healthcare authority fail to comprehend this very notion. I, as a parent, patient, or relative of a patient, will not stand for such a superior attitude and find a more realistic practitioner. No I don’t claim to know everything (well almost) but I do know HIM.
I experienced this same attitude going through IEP meetings (ones where I was accused of being “manipulated” and “too positive” about my child and his needs), that since I didn’t have the correct alphabet soup after my name then my opinion doesn’t count. Apparently the degree of M.O.M. or D.A.D. didn’t mean squat to this team, and in fact the case manager often included these feelings in statements throughout his IEP.
But things are looking up since we are out of district and the case management team has been changed effective July 1st. The new case manager believes that the parent is the expert on the child, she is the expert on services available within our region. And that is the way it should be. Even his new teacher sent home a questionnaire, the first question was “what are his strengths”, the second “what were some of his challenges last year”. Not what did he do that was “bad” or “good”, but how can we as a team make this year even better than the last. Now that is not underestimating the intelligence of others, and is empowering all members of the team to support the child to be the best that he can to succeed.
As a new nurse, I plan to give my patients & their families the benefit of the doubt. Even in clinical rotations when patient/family education was part of my duties, my first statements included “Tell me what you know.” “Tell me how I can help you.” “Tell me what works for you.” I don’t believe anyone is truly stupid, a bit dopey sometimes, maybe silly. Everyone has intelligence, it’s just a matter of taking the time to find out what they are “expert” in.
Friday, May 13, 2011
I know the receiving school wants to bump my son over to a different self-contained class. We all agree he isn't ready to go back to a regular ed classroom (espeically his one class per grade overcrowded classroom at the home school). The receiving school, my advocate, and I all agree that my son was mislabeled as a ED/BD. The only one who truly believes the statement is the one who created the self-fulfilling prophecy--his home district case manager. Then again her one report was dated 3 weeks before she did her observations...
I have no idea who is coming, she won't tell me. What else is new? For now the meeting is Tuesday. It shall be interesting. At least I know most of what hsi current out of district teacher and social worker have to say. The main issue I have with the receiving school is that their OT is not trained in sensory processing disorder and related needs. She has no idea how to work on touch seeking, sound avoiding, strangely distractable kids on the spectrum. Ironically his classroom teacher "gets it". She realized I'm not making excuses for my son but trying to offer explanations for his actions. This way if she knows why or when he does certain things, perhaps we can prevent them from happening. I used this analogy: my son likes to spin until he is beyond dizzy, it is soothing and he feels better. However, it doesn't mean that if he is in the middle of a math test and gets frustrated that he should get up and start spinning...
I am already having stomach pains about going to the meeting. His case manager scares me. At least my advocate is supposed to be there with me. She's good (and she is not afraid of his case manager as she has worked with her in the past) and she knows the law, even if the case manager tries to skirt around it.
I don't need the extra stress. Especially since I have the junior-high drama to deal with at school from my allegedly adult classmates. Seriously, certain people really need to focus on their own lives and issues rather than gossip and tell tales (embellished with false statement & comments misheard when eavesdropping) about others. As an adult I understand that it is likely a sign of weakness, jealousy, and/or simple lack of manners.
I know deep breath. I had no idea she'd bump the meeting up a week earlier, especially since the original date that worked for "her" was 2 weeks away. Of course she knows that I am unavailable in the morning so she is certain to schedule the meeting then so we can play the rescheduling game....so passive-agressive of her. Honestly, having just completed my psychiatric/mental health nursing unit in school, I'm almost looking forward to the meeting just so I can tick off the defense mechanisms and personality issues.
I just wish I had more time to prepare...but of course if my availability changes I'm the negligent parent that won't cooperate wth the "school district" representative..
Wednesday, May 11, 2011
On to the present...
So like many other mothers of 8-year old boys, I've been having issues with getting the truth from my son in a timely fashion. While my son is rather concrete and literal, he has a hard time telling me the actual truth. It's not as much lying as either not responding or forgetting to tell me something like how there is a stinky mess in the kitchen that he needs help cleaning up....(you have NO idea!)
Having a child on the spectrum, I know that traditional methods don't always work for my child. Yelling doesn't work. Most "punishments" are either not appropriate or ineffective. Since we are Catholic, and my son is working on his 2nd grade Sacraments this year (even though he's a 3rd grader) most of the year for his 'punishment" I told him he had to apologize to God. He'd sit in his space and say the Act of Contrition (aka the "I'm sorry prayer"). Don't laugh. He was rather proud when the director of CCD came to his class and he was one of a few children in his class that were able to recite all his prayers from memory upon request.
I didn't have to yell, I got a time out and he practiced his prayers. Plus I used it as a tool to teach him about the abstract (especially to a literal child with Asperger's disorder) concept of Reconciliation. He asked if he could "confess" to God instead of telling me what he did. Of course I said yes, and I stayed out of sight. I found out what I needed to know as he felt the need to talk out loud to God. He was proud to make his first Penance in March. This practice.prayers & confession worked great for both of us. He practiced, got used to telling someone what happened in his day, I didn't have to yell or get stressed or get upset (mom got a time out)
More exciting he's making his First Holy Communion this Sunday at Mass. But of course change is inevitable, while he's better at apologizing this method is not working anymore.
In come my new 'invention'....The Bad Erase Board. Sometimes we just want to erase our mistakes and either start over or move on. This is my son's opportunity, at least in our house, to do so. The Bad Erase Board is a dry erase board. My son (sometimes with my help) makes a list of what went "bad" for the day whether he didn't try his best, he was silly at inappropriate times, he wasn't nice to the dog, he was late, was crabby or grouchy due to tired,...whatever. We talk about better choices that could have been made. We talk about how we can make things better (such as writing an apology if warranted). We may practice how to do things better (such as not doing an assignment because the set-up is different than usual...instead of shutting down actually letting the teacher know that it's harder for him to complete since he's used to having two pages instead of one page that he has to constantly flip over for reference.) Then he gets to erase the board. Erase the "bad" of the day. And he literally starts with a clean slate in the morning.
(How about that for using idioms and expressions?) The physical act of erasing the bad at the end of the day is a visual reminder that we make mistakes but we can fix it. We can start each day off new and happy. I'm trying to show him that because one day was hard and frustrating by talking about it we can figure out ways to make the next day a better day. Since he knows that amnesty can be given if he volunteers information on the Bad Erase Board, he's more likely to tell me about certain incidents he might otherwise keep silent about. Such as "borrowing" some cookies from the kitchen and hiding them behind the table next to the front door. We can clean up the evidence before the ants come for a visit. Previously I might just not find out until the ants come a marching...
Now if I could just figure a way out to get my son to be more efficient, life would be grand.