Ask yourself is the battle worth it?

A comment from my son's teacher made me think. Apparently there was a situation that occurred in the beginning of the year (I suspect math calculations were involved or perhaps journal writing two of my son's largest source of frustration and meltdown; though she never did specify the precipitating factor) where she and my son got into a battle of wits.  He shut down, nearly curled into his "turtle" position. Grunting in response (if he even acknowledge her presence), turning his back to her, hiding his face, pretty much wanting to shut out the universe.  She took him to task and ended up in a battle of stubborn.  But she caught herself, pushing him was just making things worse. She stopped. It took a few but he recovered.  She apologized to me (him) for getting into a battle. She stated how bad she felt when she caught herself in the battle of wills, it's easy to fight him but it's hard to know when the battle is worth it.

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.

Things are going well...And my son is the "cool" kid...

Being a bit of a nerd/geek myself (high regard for academics, "knowledgable", not exceptionally sociable...) it's not a surprise that my son has a touch of nerd/geek tendencies.  However, my parents afforded each of their children the opportunity to become well rounded--sports, arts, dance, scouts, etc.  I was an all-star softball player. I played volleyball in high school (almost in college). I am an artist of sorts. For sports I don't "play", I do know the basics and the rules.  I wanted to give my child similar opportunities.

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". 

Underestimating intelligence of others…

 

I’ve been thinking a lot lately…but what else is new.  Our Betta fish Storm (see photo…sometimes I can take a decent pic. : 

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.

Its that time of year again...

It's time for the IEP ambush again, I mean annual review.

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..

My (nearly) Wordless Wednesday

I was having a really bad day. I had just lost my job through no fault of my own (it was a temporary position that was "promised" to become a permanent full time job, ultimately due to fiscal constraints my position was eliminated).  I was a bit frustrated, tearful and upset, especially since I took a 20%+ pay cut and the week before told that the initial approvals to turn my position into a full time job were completed. (Worse they had me come in on a Monday morning when they knew on Friday to have me work a few hours only to tell me that my job no longer existed.  The LEAST they could have done was to tell me on Friday, especially since my son had off that Monday and I had to make child care arrangements!)

Being a concrete literal child, little boy blue just wanted to make me happy. So he peeled all the googlie eyes off a Halloween project and decorated. Called out (trying not to giggle too much) Mom, come here! Of course I had to smile--who wouldn't?

A new approach for honesty...the "bad erase board"

Wow! My last post was nearly 6 months ago.  Life has been hectic and stressful.  I was very active in clinical rotations and specialty classes. (I ROCKED my Psychiatric Nursing rotation. Highest grade in the class on my final--and highest average in the class. Perhaps it's my experience living in a world of nutty people (myself included) plus as the mom of a special needs child that helped me to comprehend the abstract concepts in mental health nursing.  Because of The Coffee Klatch I had a better understanding of other conditions like bipolar disorder, childhood issues like conduct disorder, and Tourette's Syndrome.)  I have suspected for a long time that I could make an awesome nurse. I stayed away for eons because of my sister.  She's 14 months younger than me and I am utterly convinced she came out of the womb with the dream to become a nurse.  (She is now a nurse educator and a pediatric nurse practitioner)  We had sibling competition (aren't you the little sister?) throughout most of our school career, it was alleviated somewhat when we moved since she had more teachers that never had me as a student.  I just didn't want to get in the way of her dream.  She's now 300+ miles away and well established in her professional endeavors.  Now it's my turn...and I'm loving it!


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.

Day Three of being Snowed in--slowly losing my mind...

It is too flipping cold out.  Not only that but Mother Nature dumped about a foot of snow on us, well at least she waited until school break. (Not that I care, but I still would have to make up class time for nursing school & my son's school calendar does not build in snow days.)  My car has been plowed in TWICE. The geniuses of the "association" tossed my door mat into a pile of snow (mind you it is the ONLY thing that keeps flooding rainwater out of my front door.)

My son refuses to listen to me. He gets obsessed with certain topics and is trying to drive me insane. So I just tell him he has 5 seconds before I start returning Christmas presents, hey I could use the cash. 

My mother brought over a shovel so at least I have a chance to dig out my car from the mounds of icy snow the "association" plowed in twice (did I mention TWICE!!!)

My wonderful child keeps making messes in the kitchen and throughout the house. He's convinced himself that he is going to go sledding (mind you at 20F it's sheets of ice outside!) He claims that he is starving to death (I actually have non-perishables in the house. No milk. No eggs. But I do have toilet paper). 

The dogs are insane.  Especially since it is so flipping cold outside & I have to carry my miniature horses outside & across the street because the "association" puts down so much freeking calcium salt that it burns their paws & the idiots try & lick the salt off. But I shouldn't be surprised since one dogs steals tissues to eat and the other will eat anything she can get her little paws on.  They are content right now keeping me warm laying in my lap.

Oh yeah, I need more dog food. Those who fed the dogs on Friday morning failed to let me know that the bin was empty. Comfort & Joy,  My mutts are rather happy with carrots & chicken nuggets right now.

My son is truly on another planet. He disappears for 15 minutes to do things that should take 30 seconds. I can see how his teacher would be chronically frustrated at my little genius's inefficiency.  I've been doing some reading for school, and my practice assessments online (and doing well thank you very much!)  We've been watching old shows & odd movies on TV. Lots of hot cocoa. (Love my Keurig)

Hey last night I made pancakes for dinner.  I think I'm going to make my son clean the bathtub today and maybe I can finally fix my toilet tank. (Thank you eHow videos!)  I am getting tired of "yelling" at my crazy 8 year old.  But he can be cute especially with his odd choices in wardrobe.

On the positive side of life I do fit into a pair of windpants that haven't fit in at least 4 years.  Oh and check out my new blog banner I created it myself using a digital scrapbooking program from Stampin' Up! I used a photo we took of T-Rex at the American Museum of Natural History in NYC (aka "Rexie" from the Night of the Museum movie)/

People wonder why I don't like Christmas (But I truly love my son)

So here it is Christmas morning and I still don't have my tree up (and at this point I'm not going to bother). Just too exhausted with nursing school & taking care of my son, (who is very good at exhausting his mom)

For months now my aunt keeps telling me how much I suck. When her father (my grandfather) died she broke her lease and then moved into her mother's house with her son. (Who was about the same age as my son when my father died)  She kept telling me if I am a good person I'd move into my mother's house.

A few problems there:

1. Unlike my aunt, I own my home.
2. I don't like the school district in the neighboring town, I've fought long & hard with my current district.
3. I don't really WANT to live with my mother again.
4. My mother doesn't really want me to move in, but we'd both make it work if it was necessary.
5. The real estate market is in the toilet.
6. There have been many issues with my siblings over the years. Compounded by the fact that I am the only one who didn't move out of NJ. So of course my mom knows my son best, because she sees him all the time.  I could just hear the nasty remarks now if we moved in with my mom!!! (Would you believe my one psycho sister actually told me that I;ve "had mommy long enough" and that I need to tell her to move by my sister in VA or the mutants in GA.  (My mom doesn't WANT to move out of state.. She doesn't like GA. And she doesn't like my BIL in VA(

I did promise my mom that when she sells her house she can move in with us in our condo. Plus we have cable & internet.

So anyhow my one sister has flown in for her "annual" visit (one that often costs my mom big bucks that she doesn't have). She calls my mom occasionally during the year but never helps out with money, solid advice, or anything else.   My grandmother basically declared my son and I chopped liver last night because "your mother is all alone" and "thank God you're here (little sister) because no one helps your mother and no one stays with her." Huh? My sister sleeps until noon (she is on CA time). She's not as bad as my other sister who takes my mother's car and leaves her stranded.  Shopping is a hobby rather than a necessity for her, my mom usually buys things with her that she can't afford. 

On the good side...I kept my mouth shut.  Amazing how she gives $100 to my cousin & his wife (who bought a second home out of state 8hrs away and make more money than I have in 10 years) and as usual I get a sneer. "Because they may need something on the drive to their beach house."  Yeah okay. Thanks for passive-aggressively calling me chopped liver to my face.

Best part is my aunt will claim that my mother tells her and my grandmother how rotten I am. When I ask my mother she tell me she says no such thing and if anything she tells them how grateful she is to have us nearby. We help each other out financially and emotionally.

So Merry firggin' Christmas to you all!

Santa didn't leave too much last night. He forgot the stocking stuffers in my trunk. Left the presents at my mother's house.  But left a little red bag with coal next to my son.  My son was very excite when he opened the red bag.  He said "cool, I LOVE rocks!"  My son is such a nerdy, geek like me.  Our next quest this AM is to look up coal on the internet and find it's chemical properties.

Oh, and revenge will be sweet. I purposely didn't buy nosy toys for my nephew & niece. So what does my cousin give my son a friggen Bop-It with no off button!  I told my nephew to make sure he wakes up Mom & Dad with his drum (from last Christmas) at 3AM this morning. (He's 2 so I'm not sure if he followed through with his promise).  But next round of birthdays & Christmas, his son & daughter will be sure to get the most obnoxious, loud no-off-button toys (age appropriate of course) that my son & I can find.

Anyone have suggestions?

I think I have finally found my niche in life...reflections on nursing school

I started nursing school in September.  The lecture portion is rather challenging but also common sense to me. I have been doing rather well between my personal background & experience and our texts & lectures, my grades truly reflect my knowledge and effort.  In the beginning of December, we started our clinical rotations.  For the current rotation, our class has been divided between three sites. A rehabilitation hospital, a long term care/rehab facility, and a sub acute facility that also has long term patients.  My first stop for the month of December has been the rehabilitation hospital. The first half I was on the medium stay wing with mostly surgical/orthopedic patients. Patients on this wing are inpatient for 1-6 weeks depending on their condition and medical history. 

At first it was daunting to assume the role as student nurse and have a higher level of responsibility for patient care. While previous patient care experience taught me how to interact with patients and do some simple procedures (such as blood pressure, dressing changes, and the like) it was still a subordinate role that was directed by an RN or an LPN (and in some cases the MD/DO).  The level of documentation as a nurse is vastly different of that required of a PCA, CNA, or EMT.  After the first day, it was a bit easier.

It was truly awesome to see the changes in patients over a short period of time. For example, the woman who the first day I saw her was very anxious and needy, in addition to being doubtful of her own abilities. She told me initially that she could not do anything herself, and was worried that she'd have another complication that would send her back to the acute care hospital. I worked on building her confidence, and reminding her of what she COULD do rather than what she couldn't do.  I told her I would help her do what her present condition prevented her from doing, and the health care team would work together to build her independence.  She was apprehensive but was proud to tell me what she could do. (She did think it was funny that I had a hard time helping her with her hair clips. I don't use them in my own hair and I have a son...) 
The best part was when I came back the following week, another student told me to go in and help her with care, stating that "she requires a lot of help."  I walked into the room and asked her how I could help her, she told me she just needed her reading glasses. I obliged, and when she 'dismissed me' I reminded her that I was only a call button away if she needed me.  The most incredible part was what I overheard when I was outside the room working on my paperwork.  She had gotten a new roommate the evening before. The roommate was tired and apprehensive. The patient proudly told her of her recent accomplishments towards independence, and even said "(This team) is great, in a week you'll be surprised at what you can do by yourself again."  The primary nurse for the day was next to me and smiled, "That is what this job is all about."

I most certainly think I have made the right choice going into nursing. 

These past two weeks I was on the other side of the hospital. While a still a sub acute unit, the patients required a higher level of care due to their more complex conditions; plus their length of stay is much longer often 2-3 months.  I had my "own" patient assignment, this week I had another gentleman.  He explained why the holidays are such a difficult time for him.  (We had just finished our nursing fundamentals unit on communication & therapeutic communication/emotional support the day before our assignment shifted.)  Now previously I might have said "I understand how you feel.", "It must be tough for you." but this time I did not.  I reflected on my own experiences and the lecture on how frustrating these seemingly empathetic statements can be to someone.

Simply, I said "There is nothing that I can say that is going to make it better." My patient brightened a bit and said "You know you are right." Then I did the skill that is probably the most difficult skill to master, I simply listened to him. I was silent, as that was most appropriate. After listening to him for a while, I could hear the pride in his voice when he casually mentioned his family.  When it was time, I asked him if his family was nearby....the reaction was amazing.

My patient was rather ill, in addition to being despondent.  He lit up like a Christmas tree when talking about his children and grandchildren.  He showed me the items decorating his room that his adult children had delivered. He proudly told me of his youngest grandchild that was able to visit him.

When I returned this week, he had taken a few steps backward in the way he was feeling. His plan of care altered as nursing & medicine in general must be flexible.  But again he greatly improved when his family visited or when given an opportunity to (boast proudly)talk about his family.  I reinforced small accomplishments, such as finishing getting ready nearly 20 minutes faster than the day prior. (We are there 2 days a week.)

I knew, at least emotionally, he was feeling better when he commented on receiving a physician's order for a day pass to go to his family's home for Christmas Day.  He even smiled and said that he knew who would be picking him up. I took the 'bait' and asked him "Who?" He said since his pass is for 7AM, he knew that it would be his daughter with his youngest grandchild, since like most young children she had everyone up at the crack of dawn on Christmas morning to see what Santa had left overnight. I had to smile. 

This week's experience helped me to see the true value in silence and active listening. If I hadn't been listening the first day, I would not be aware that he had a positive relationship with his children. Asking if his children was nearby could have royally backfired if he felt that his children "abandoned" him or if they were not on speaking terms.  By taking cues from our conversation, I was able to know when to gently transition the conversation to his pride and joy, his family.  Even with my female patient last week, she started off nervous and negative about her ability, but asking her if she could do simple tasks and seeing her smile & say "I CAN do that!" (and more excitedly with each task that she realized she could still do) was wonderful and enlightening..

I also learned how much a person's emotional state and their self-confidence can impact their medical condition(s) and progress. Simply empowering a patient toward independence can positively impact their ability to recover, in addition to raising their self-confidence.  I also realized that permitting a patient to share their positive experiences or talk about a source of pride (in my one patient's case--his family) can improve their overall appearance.  Happiness and comfort can affect our vital signs (blood pressure, pulse, respiration rate) and our ability to heal.  While I may have always known this in my heart, it was amazing to see the effect in clinical practice.  To know that even as a student, I was able to play a minuscule part in raising a person's self confidence and self esteem is humbling. To know I had an effect on the life of another...well there are no words for that.

Sure I have had a direct impact on my son's life, emotional state and well being, but that is harder to see because I am with him everyday.  Kind of like losing weight gradually, you may not notice until someone else comments (or preferably compliments. :) )

On thinking clearly, and potty mouth....

I am loving nursing school, but that's another post. So son started school in the "out of district" self-contained class. He LOVES going to school now. He LOVES his van "bus" driver. He LOVES his teacher, and his classmates. Not too keen on the school "social worker".  His teacher Mrs. B is most definitively a true asset to teaching. When he had a particularly bad day I got a call, saying Blue was not doing well, uncharacteristically verbally defiant. (as in teacher: "Please open your books so we can go over the directions." Blue "I'm not opening my book." teacher "please open your books so we can go over the directions." Blue: "I don't need directions since I'm not going to do the work anyway" and proceeds to toss is book on the floor.) Ummm, ok. Well she and I both know his "typical" refusal is to stare off into space and ignore the present, "refusal by default" is what we call it. Sometimes it can be semi-intentional (he's frustrated and thinks if he ignores everyone they'll just go away) other times it's unintentional (he's just in his own little world)

I get the call (nearly got in trouble since cell phones are not permitted in the classroom. I was on lunch break. Of course my mom couldn't leave work either.)
Mrs. B tells me about his day thus far, then says "Can I ask you a question?" 
me: "Um OK" 
Mrs B. "Is (Blue) on any new medication?"
me: (puzzled) "No, why?"
Mrs. B. "He told me this morning that he couldn't think clearly because he didn't take his medication." (The other students apparently are ADHD and often blame their inability to focus & think on new medication or forgetting to take their medication.)
me: trying not to laugh. "Did he perhaps use the term 'Claritin Clear'?"
Mrs. B. "Now that you mention it, yes."
me: "He had a bit of a runny nose this morning & sneezing. I offered him a dissolvable Claritin tablet and he refused." (trying not to laugh) "The commercial "Think clearly. Claritin Clear." has been running on TV a lot lately."
Mrs. B. "His eyes are pretty glassy and he has been sneezing." (clearly trying not to laugh now)
me: "So would it be easier if I pick up miserable boy early?"
Mrs. B. (now giggling) "I think that would be great. He is pretty miserable. and he didn't get much work done today. Can I send it home with him?"(under her breath I can see her say "Claritin clear, I can't believe it" and chuckle)
me: "I'll be there as soon as I can." ( I think she broke into hysterics once she hung up)

Flash forward to me arriving at school, though he came skipping up the hall big smile on his face, eyes red and tearing, sneezing every few minutes.  me "Dude, you know this isn't a reward. You are in big trouble. You have a lot of work to be done. And since you made me leave class, now you have to come back to school with me and be our patient for the rest of the afternoon."
He stopped short "uh, uh, really?"  me "no dude, my class is almost over, we're going home"

He passed out within 30 minutes of getting home. Allergies can exhaust you.

Yep that's my kid the parrot. He didn't even know he was funny this time.

The parrot thing can be not such a good thing too. Being in a class with three other 8 year old boys, two who have older siblings, can be an asset or a detriment sometimes. Especially with the discovery of "potty mouth".

No not THAT kind of potty mouth. More like bathroom, toilet humor. Like "potty", "butt" "poop" "pee" "fart" and a few others. Sometimes all it took to set them off was "I need to go to the bathroom."
My son was NOT alone in this endeavor, but sometimes his internal sensors didn't tell him to stop. Sure it's funny but not all the time. He was starting to get out of control.

So the decision was made between parent & teacher. Each potty word would cost him one piece of Halloween candy. His behavior report would have a tally of words for the day.  Let's just say my son got to eat very little Halloween candy this year. It KILLED him to turn over the bag of candy to his teacher each week. He tried to "forget" he had it, but forgot that mom & Mrs. B actually talk to each other (unlike previous teachers). So Mrs. B knew to ask for her payment.

Yeah, well potty mouth & inappropriate words have pretty much stopped now.

All in all the best was that we encountered the principal/guidance counselor from the home school earlier this month. She spoke with my now animated son, before he excused himself (!!) and went to play with his friend.  She came up to me later and said "In three years I've never seen your son so happy." (Even the CST case manager said the same thing when she did a classroom observation in early October) It took all that I had to not say "Well the only thing different now is that he is not in your school anymore. Coincidence perhaps, I think not." but alas I didn't say it. (My sensors work MUCH better than my son's) I simply said thank you.

Sure my kid is not perfect. This placement is not the BEST for him, but it certainly is an improvement over last years. He has an awesome teacher, and the paraprofessional classroom assistant is just that a classroom assistant. Unlike the classroom aides in his previous school who thought they were co-teachers (without a license) or his 1:1 who would change his assignments without consulting the resource room or classroom teacher. The paraprofessional is a professional, she works in tandem with Mrs. B.

One day at a time. Oh and not only has my son's reading ability skyrocketed (as I already knew. His 2nd grade teacher didn't know he could read because he refused to read aloud in class. She was a bit huffy when the resource room teacher said he read for her all the time in the small group setting.), he is actually voluntarily without much prompting doing is journal writing and other writing assignments. Now that he is getting his ideas out, she is working on properly answering questions in a full sentence and basic grammar & composition.  He still has difficulty with addition/subtraction but he is ROCKING multiplication.

He is still obsessed with rocks, weather, astronomy,Legos and science in general. Me being such a geek, I am absolutely thrilled. Now he wants an Erector set (we saw one on TV yesterday that was used as a prototype model for a major invention. And it was major league cool.) Funny part is that I had one in my cart at TRU, but put it back thinking I was projecting my interests onto him, since I always loved Lincoln Logs, Tinker Toys, Legos & Erector sets as a child. Plus I figured I'd end up having to build it anyway. Darn it, now that he knows what it is he wants it!

Monday Musing--my Aspie and his instincts...

Let's face it, most Aspies are quirky and have social defecits. It is just who they are, my own philosophy is to just accept my son for who he is, and to help him to understand the nuances of social communication as best as I can. Sure my son needs social skills groups, art therapy, a behaviorist, speech therapy, physical therapy and occupational therapy, but so do a lot of other children.  There has been speculation that some of the great figures in history my have also been Asperger's or on the spectrum. They survived and thrived and so will my child.

There are many times where my son's social defecits are painfully obvious. He has poor pragmatic language and expressive language skills. This is obvious when it's time to 'share jokes'. At least he has his old standby that he knows is funny and why. (Where do cows go on dates? To the moo-vies.) Other times he hears a joke and is confused but laughs because the others are laughing.  His social awkwardness shows when he meets a new group of children. As he gets older, social nuances are more confusing.

However, my son does have good instincts. Even from his preschool years. My dad used to get upset when he'd pick my son up from day care and the boys would be playing on one side of the classroom and the girls would be playing in the kitchen area. Little Boy Blue would be playing with the girls, complete with apron.  It would be frustrating for my father, but at least he only verbalized this to my mother and me and never interfered.  He found out why when he came a bit earlier to pick up Blue.  The boys would be ripping toys out of each other's hands, tackling, and beating each other over the head with plastic dinosaurs. The girls would help my son in play, and even let him choose his role. They were more mild in their pretend play. My father came home that night, and said "Now I know why (Blue) plays with the girl, he's smart. The boys are out of control and always in time-out. (Blue) knows how ot stay out of trouble."

When he was 4 & 5 my son played instructional soccer. He's a little clumsy and had some difficulty with the various skills. Soccer simply didn't hold his attention.  Occasionally he'd have a shot on goal, however it was because another player went down. My son would stop and make sure the other child was okay and help them up (regardless if they were on the other team).  His coach who was working on getting my son's 'head in the game', turned to me and said "Well daydreaming we can work on, but I don't want to change his empathy and care for others."  I just smiled. At 4 my son would rather give up a goal to help another child.  That is something you cannot teach, no matter how hard you try.

Flash forward to the present day.   Each child in the social skills group has their own challenge, but over the 10 sessions they often make a friend.  In the first group, my son gravitated towards this young girl (his age). Some would think it was because the other boys in the group were more aggressive and over the top, but it turned out this girl really needed a friend.  Not only was she a foster child who's original home was out of state, later I found out that there was more to the story. This young girl has had an extremely difficult time in her short life.  The mom approached me a few weeks into the session to tell me how her foster daughter gushed about her new friend Blue. She said how much she apprieciated my son's befriending her.  She has a very hard time making friends since she was so isolated in her birth family.  This little girl needed a friend, and that friend was my son.

Wordless Wednesday...or not

Well I don't have a picture to post yet.  I need to let my camera charge. But we had an AWESOME time at my son's first major league ball game at Yankee Stadium.  He was so into it, clapping, chanting, dancing and even figuring out the pragmatic language (like why when the pitcher named Joba (prounanced Jabba as in Jabba the Hut) would get Star Wars like graphics on the big screen when he struck someone out.)

It was a great game, even better now that my son knows more about the game.

He did AWESOME on the overly crowded subway, even when it got loud. I asked him if he needed to cover his ears, he said no because it was Yankee talk, and that's okay.  :) He was thrilled when another subway rider who was also a Yankee fan offered him a piece of gum. (his weakness) even better when I said it was okay.

My flavor loving child was thrilled when I said yes to the order of garlic fries (and they did not dissapoint). 

I think his biggest thrill was not how awesome our seats were, but when I adjusted the resolution on my camera so we could take photos of the field. Then zoom in. He got great shots of his idol...Derek Jeter.

The bus ride back from the city was filled with Yankee facts ascertained from his prized souvenier...a Yankee program magazine.

Once my camera charges I'll post a pic or two of my thrilled child at Yankee Stadium, or at least one of the photos he took.

Another Almost Wordless Wednesday

This photo is actually almost difficult to look at, it was taken less than a month after my father passed away. We had an extremely difficult 13 months as he hung on for life (the last 6 months on hospice). There were so many things that my son saw at 5 and  6 years old that no child should ever have to see. But he also saw how hard I advocated on my father's behalf and in effect my mother's behalf to, even if it meant calling the county sheriff to file a formal complaint against a nurse for patient abuse. Fortunately for us, most of the local hospital management remembered me from when I worked there 10 years prior. You see, I had a reputation for ALWAYS putting the patient first, even if it meant I may have to "speak" to administration for stepping on a nurse's toes due to a perceived power struggle. (Since patient care & satisfaction was always my goal & result I never received a formal reprimand or even an informal reprimand in my 7 years at the hospital for making patient care a priority).  Anyhow, of course being the only child who stayed near my parents I went through the whole 13 month old ordeal at my parents' side while my siblings tended to their own lives out of state.  When there were problems that my mother couldn't handle at the medical facilities, I'd get a note that my mom would be taking out my son for dinner and that I needed to sit with my father (who was in a coma).  I'd go and rabble rouse at the hospital or nursing home to ensure my parent's needs were met. In the end, my son & I were at my father's bedside with my mother, when dad finally passed. I had to make the arrangements with the funeral home, and I will be forever thankful to the funeral director for his grace, compassion, and understanding at that most difficult time.

Anyhow, my mom needed a day out and she always loved the beach. One of the ONLY things that could make my mother smile during that most difficult time was my son. Not even my nieces and nephews had the same effect. Even now 2 years later, my son still has the same effect on my mother (though sometimes she acts like an 8 year old boy along with him).  We were walking and exploring on a trail in the county park. They went ahead of me. I found them hiding in the grasses exploring the shoreline. They didn't know I caught up to them so I was able to get this (and a few other) photo. It was like peace after a very long ordeal.

Thoughtful Tuesday--Rainbows and angels...

Some people think that children with Asperger's do not know empathy and compassion. That is so not true with my son.  Though sometimes he is in his own world, he is aware of others. Whether he knows what to do with the empathetic emotions is another thing.

My father was dying. I needed to know how to prepare my son. My pediatrician at the time simply said, "I know you are a good mom. You'll know what to say and how to say it."  Jeez, how do you explain death to a 6 year old? I tried the children's desk at the library but there were no appropriate books for his age level.  I guess if it's not a pet people ignore the death.  (I was determined to make my son understand and remember his grandfather. I was 8 when my maternal grandfather died, my memory is that my mom cried a lot and he was gone. No explanation. Until I was MUCH older. )

In the week before my father's death we found a dead bird in front of my parents' house. My son and I buried it in the yard. I explained about death and how some people are buried in the ground. Later that week we passed a cemetery. He asked what it was and why there were such nice rocks there. (Rocks are one of my son's obsessions.) I explained what a cemetery was and why there were "rocks" there. He asked me what would happen to Grumpa when he died. (My son was there for the entire time my father was ill and dying and when he was finally placed on hospice. We had already talked about my father 'going to heaven.') I didn't know what else to say, so I told him the truth. Grumpa wanted to be cremated. I explained that since Grandpa was going to heaven when he died, he didn't want his body buried in the earth like the bird. He wanted to be turned to ash. (This was enough of an explanation for my son. Thank goodness.)

Anyhow, my father passed away early on a Sunday morning. My mother, my son and I were at his bedside. My one sister was there too. When we finally got home, it poured rain and stormed. It was like the heavens were crying with us. We made phone calls to notify those who needed to know about dad.

In the evening, my mother asked us all to go to Mass together. I remember sitting in the pew trying not to cry. Everything there reminded me of him. My poor son knew we were sad, and understood about my father. He was very touch seeking and sought to rub my arm for comfort. I am the opposite and when he strokes my arm it gives me the creeps. But I knew he needed the sensation for self-regulation, so I 'tolerated' it. I even made sure he had a piece of satin ribbon for his pocket in case my arm wasn't nearby. It was tough as the usher was a family friend, I could tell he was going to ask about my dad. When my mom tearfully burst out "(My husband) died early this morning". I guess she figured being proactive she wouldn't be asked many questions. My son squeezed her hand right before she spoke, and held it until the end of Mass.  This was the grounding that she needed, especially since this was the first time she said that my father died out loud.

The rain finally stopped as Mass ended.  In the Catholic Church, the Mass ends with "Let us go in peace to love and serve the Lord."  We felt a bit better. As we walked out of Church, my son saw a rainbow in the sky.  As we drove back to my parents' house, the rainbow seemed to follow us. My son pointed this out to us all.  When we got out of the car, we again saw the rainbow over the trees. We all turned to walk into the house, but my son stopped us all. He grabbed my mother's hand, pointed to the rainbow and said "Look at the rainbow. Grandpa is going to Heaven now."

When we turned, there was a small cloud that strongly resembled angel wings slowly moving up the edge of the rainbow.  I will never forget this. I even snapped a photo with my ever present camera. And yes, you can see the small cloud wings traveling up the rainbow in the successive shots.

I looked over to my mother to see if it was too upsetting for her. Instead I saw a calm look on her face and a small smile. I couldn't even shed a tear (though as I type this I am crying, trying to not short out my computer), I too felt at peace.

Once again, my son (who at the time was not diagnosed) was able to sooth us all. This time he knew right what to say...

(Side note: my father's ashes sit in a box on my parents' headboard and have ever since the funeral director delivered them to the house.  When my son is asked about his father figure/grandfather he now tells them, matter of fact "Oh my grandpa, he is in a box on the shelf." I don't even bother to explain anymore other than to tell the inquirer "He's right.")

My son has a Mohawk..an experiment in saying yes

My son has wanted a Mohawk haircut for a few years now. The closest we got before was sides trimmed shorter than the top. Those were meant to be a spiky hair, but he wold always style the spikes in a Mohawk-like stripe down the middle of his head.

Little Boy Blue turned 8 last Saturday. I decided to do something different. Many parent magazines lately have been publishing articles on parents saying yes instead of no all the time.  It's often easy to say No. Which inevitably turns to "But Wh-yy-hy", and then "Because I am mom and I said no".  I figured since it was his birthday and we weren't having a party this year (partly because his birthday falls on a holiday weekend and we live near the beach so traffic is a nightmare, partly because most of his friends are now busier and most likely wouldn't be able to attend due to other commitments). So I decided to give my son the gift of "Yes" (within reasons--no chance of him getting a yes to things like driving the car, sitting in the front, no seat belt, or no helmet when on bike,scooter or skateboard).

It started on Friday night. Even though I knew he was exhausted I agreed that we could go out to dinner with my mom. I didn't realize that he ate 5 mini cupcakes just before we left but it didn't hurt anyone so I would have said yes anyway. We went to Red Lobster (I wanted to go somewhere else but it was the start of "yes" so we went to his choice). Normally he gets a non-soda beverage. I said yes to the Red Rockin' Shirley T (Sprite & grenadine with maraschino cherries). He usually orders popcorn shrimp and a baked potato. He wanted French Fries (guess what the answer was?)  He wanted me to order his food (normally he has to verbally ask the server to improve his linguistic skills) and it was yes again. Since he was full from the cupcakes, he wanted to take his food home for "later". I didn't get upset that he really didn't eat much, yet wanted a refill on soda. But I said "yes", and it was tough to do.

On Saturday morning he wanted to sit around watching TV for a while. (Yes again--especially since this is a rare request). Blue wanted to go to Wawa for breakfast except he wanted a cookie, a brownie & a chocolate shake for breakfast. Yes, yes and yes again. He wanted to get a haircut....I said yes...then he told me he wanted a Mohawk. Yes. He wanted to go to Big League Barbers (his new favorite place). We compromised by getting it very closely buzzed on the sides. The stylist even colored the spikes green.

I think it looks rather cute. It turns out to be a very sensory haircut. He likes the feel of the buzzed sides, he likes the flop of the longer hair. He can now wear his goggles for swim class as there is no longer hair to get caught in the band.  He is actually thinking about buzzing the back and then the top off later. He likes that there is no hair in his eyes or on his ears...

I almost think he likes the flop of the top the most. It does look really cute. Besides who did it hurt by saying yes? He is happy. He'll have a memory (and now photos) that he can show his cousins & future children about the year his mom said yes to a Mohawk haircut.

Of course after the haircut, we had to go show my mother. We caught her in the parking lot. I think she nearly fainted when she saw him. I told her about the day of yes. Her response? Good luck with that, it's not an easy thing to do.

Next we went to the mall. We stopped at Old Navy. We needed to get some short sleeved and tank tops and perhaps another pair of shorts.  He wanted flip flops (he's been wearing Crocs lately). I said yes. I mean really who cares if he has two different flip flops, besides it seems that's the style. While I searched for his size, he found the giant gumball-like machines. Excitedly he asked for a quarter. Normally I say no, seriously we don't need more crap in our car or home. So this one time I said yes. He got a funny rubber Frisbee and of course asked for another quarter.  My son has always been obsessed with all things balls. He wanted ANOTHER bouncy ball. I said yes. Fortunately I had no more quarters for a third round. I needed to run a couple of other errands. We passed by the Picture People.

There was a new associate asking if he wanted to get a free picture. He looked at me questioningly...and I said yes.  I must say the photos came out pretty cool. Fortunately I asked him to change his clothing and his bright blue skateboard shirt matched his bright blue crocs. Even with a zillion Silly Bandz on his wrist (another yes--normally he's limited to 3 on each arm because he will obsess about having them in the right order & position on his arm), he looked like such a big boy in the photos. I even bought a sheet or two.

Next we stopped at Children's Place. He picked a couple of crazy shirts, including a dark purple Hawaiian-style shirt. Yes again. This was an easy yes as they were having a monster sale, he needed the extras and it cost so little.

Of course next he was starving. He asked if we could go to Auntie Anne's.  They had samples of their pepperoni pizza pretzel. It's a premium pretzel that costs a bit more, but I said "Yes". He was THRILLED.  He wanted to stop at the Disney Store. He is now fascinated by the Muppets (more so by the fact that I know ALL their names and can mimic some of the voices). He found a Muppet tote bag and t-shirt. And guess what....Yes again.  Though some of the requests were tough, it's actually kind of fun to saying yes.

Next door was Build A Bear workshop. He wanted 4 stuffed dogs, a stuffed baseball, and 4 Zhu Zhu pets. I didn't say no but I told him he had to ask Grandma (who I knew would say no) because they'd have to stay at her house since Roxie likes to 'play' with the toy hamsters & stuffed animals. (By play I mean eat)

We had to run into Bath & Body Works. The semi-annual sale was in full swing. He wanted not one but two "hanitizer" (hand sanitizer) holders and three new hand sanitizers. Especially with the high value coupon we were given upon arrival, I said yes. Once we paid, he immediately assembled the silicone holders and hooked them onto his shorts.  Quite the sight I must say. Little boy with Mohawk hair cut with a tie-dyed silicone hand sanitizer on each hip, bright blue Tony Hawk t-shirt and bright blue Crocs.

One aside comment, I was rather impressed that every time someone said "Happy Birthday" to him he graciously said thank you with no prompting. He even voluntarily told those who inquired how old he was.

Our next stop was Target. He helped me find our needed items, then requested a small orange soft side cooler (since it could hold more ice packs). I did say yes, mostly because he was right--it would be good for baseball camp in the heat.

His only birthday request was for oil pastels (NOT chalk pastels) and paper.  So next we stopped at the craft store. Crayola makes a set of 24 oil pastels, he was sold on this set because it included silver & gold metallic pastels. Even though there was another set with more colors for the same price, the required silver & gold were not present. So I said yes...

His final request was to go to the boardwalk for dinner and ride the amusements.  Guess what I said...

Between the Mohawk haircut and the day of "yes" I think my son will remember his 8th birthday for years to come...

Thanks for stopping by.

Friday Funnies...

We've all been having a hard time lately. Between the troubles with Blue's school and like most of the world, money troubles, tough times are taking their toll.  Blue has been in baseball camp this week and having a blast with his equally silly buddies.  For Blue & his buddy D (a great friend because they both laugh at their own quirks. Good boys but very silly boys. Blue definitely does not feel awkward socially around D, who is very easy going), frozen washcloths are huge entertainment. Since it's been in the 90's and higher around here, I had to be creative with cooling off techniques. Of course boys + dirt= mess.

After their game played at the end of the camp day, both boys are filthy and hot. In comes mom with the frozen wash cloths. They were intrigued at first, because the washcloths were frozen solid. They liked the cooling, but prefered to make silly sculptures at the still frozen cloths. Even a bend in the cloth cracked them up. In a couple of mintues the cloths started to soften, so the boys decided to figure out the "best" place to put them. D put it on under his baseball cap--the flopped down cloth looked like dog ears. Riots of laughter. Blue not to be outdone, twisted the cloth into a bone shape and pranced around with it in his mouth. D was drinking and spit out his water he was laughing so hard.  This of course made them laugh even harder.  They couldn't even talk but had a language all their own, a simple look was all they needed to burst into another round of fits of giggles.

D's mom and I could only smile at the sight. At least they got some of the dirt off their faces and necks, and they were not so overheated. Two cheap wash clothes from Ikea, water & a freezer equals lots of fun for two 8 year olds. Silly boys.

That brings  me to last night. I have a "sod squad" grass pass pack for the local minor league baseball team. There was a game last night. Since D was going with is father, Blue wanted to go just in case he could find D. So I asked my mom if she wanted to go, she wasn't sure in the AM so I told her we'd call her later.

Around 5 o'clock Blue called my mom. I knew the answer wasn't what he wanted to hear because he handed me the phone and said I needed to talk. So I asked my mom what she said that he didn't like, this caused our own laughter since this is so typical of my son. If he calls my mom & she says no or whatever the unwanted response is magically he decides that I MUST talk to her, like I have magic powers to change her mind.  Last night I did, mom said she was going to mop the kitchen floor. My response was that we'd be there in 15 minutes. She reluctantly agreed.

Blue decided that I woudl be chaufferm, to my mom's chagrin at first. The two were cracking up at the photos on the grass pass tickets (they weren't that funny to the typical eye but apparently when you play I Spy with pictures it can be a riot). My mom even seatbelted herself in the back seat (she hates to do this but my son matter of factly informed her that the car will not start until she is buckled. Safety first.) We had a blast on the grassy hill. No one bumping into us to get out of the row. An unobstructed view of the field. Biggest "problem" was silly children running amok and that wasn't a problem since they were laughing and having fun. We left after the 8th inning, then the fun REALLY started. First my mom started flipping out that I was trying to decapitate her with the seat belt. She kept pulling on the belt, in effect locking it into position. It really was funny to watch in the rear view mirror. At the red light her seat belt released and she was fine. Since it was dark, they decided to play I Spy in the dark.  Since the car was moving, it's a difficult game to play. So they got silly and looked for obvious things. Like the red lights of the car in front of me.  At one point my son couldn't figure out what she was talking about and called the mystery object a "thingamawtchamacallit".  This of course cracked them both up. As they made up words for the "spied" objects that may or may not have actually existed.

In the end, my mom thanked me for "kidnapping" her. My son had a blast laughing with his grandmother.

Thankful & Thoughtful Thursday...the anniversary of a diagnosis

Since my son was a "late diagnosis" (he was diagnosed with Asperger's Syndrome/Disorder just after his 7th birthday a  year ago today) sometimes I am asked if I was blindsided by the diagnosis. 

My answer--not really. Though there is still a stigma attached at times to an autism spectrum disorder diagnosis, it's not the end of the world. I suspected my son was on the diagnosis since toddlerhood.  There were clues all along. I had odd insurance coverage and certain specialists and diagnoses were not covered (including almost anything in the DSM). Since my son had signs of sensory disregulation and Asperger's that can often mimic ADHD, his pediatrician asked if I'd be willing to try a stimulant medication to see if it would help. He wasn't officially diagnosed with ADHD (I don't remember what the pediatrician coded him with) but we tried the medication. It didn't do much other than make him more likely to cry and totally killed my kid's appetite. He was tall & slender, on the medication he became skinny and often would burst into tears for no obvious reason. I later found out that it was because he didn't need this type of medication, in fact he didn't really need medication, he needed accommodations & interventions such as occupational therapy. I don't fault his old pediatrician, he did what he could within the constraints of my insurance coverage and tried medical therapy that happened to not work....

When we switched pediatricians she said she didn't think he needed stimulant medication. He acted "typical' as far as 'hyper' activity--he was just an active boy. But she knew something wasn't exactly right but it was beyond her scope of practice so she referred us to a local developmental pediatrician. Unfortunately the developmental pediatrician said "known to have ADHD" though he shows no signs of ADHD and his Connors scale ratings were firmly within the average spectrum of a typical child.

At this point I was doing my own research and found the "Out of Sync Child" book by Carol Kranowitz. It was like a light bulb went on in my head.  THIS made sense. His pediatrician agreed, but she didn't feel comfortable making the diagnosis so she referred us to a specialty children's hospital and a neurologist who was an expert in sensory processing disorder (SPD).  Half way through first grade my son finally had a quality occupational therapy evaluation and he scored off the charts in all the sensory testing performed...looks like mom was right.  The school therapist was great, she gave me lots of resources and tasks to work on at home. She started a brushing protocol (which I had unknowingly been doing with a washcloth for months prior), introduced us to heavy work and therapeutic listening.

A bit of historical background on my son..
When he was a toddler & started walking there were signs of SPD and an ASD (autism spectrum disorder). He'd randomly lick the walls or start banging his head (it would freak out my dad, he commented once that he was showing autistic behaviors--this from a man who refers to diabetes as "sugar"). He had poor eye contact which drove me nuts because I was never sure he was listening to me.  The day care said it was "normal" at 2-3 years old to not have good eye contact. I knew better but I regret that I didn't do anything about it.  He wanted friends but would not always know what to do socially. He'd often play with the girls not only because they were less rough than the 'turn-everything-into-killer-dinosaur-or-tackle-sport' boys but they were more likely to tell him what he was expected to do.  My son had problems following multiple step directions, fine motor skills, on-task behavior, was touch, light and very sound sensitive.  I begged for help to refer him for evaluations, but the school pooh-poohed my concerns. I knew something wasn't right but I did not know where to turn. I did not know how to advocate for my son. My mother put blinders on (to this day she thinks I 'talk too much' and that I am 'ruining' my son by getting him an IEP.  She doesn't understand that I am advocating for & protecting my son.) When I had his first round of IEP evaluations, the school psychologist decided that he must be ADHD (even though she cannot legally make a diagnosis as she is not a legal psychologist nor a licensed professional counselor) and not surprisingly when she asked her consultants to evaluate him for ADHD they all came back with that diagnosis.  One psychiatrist did not even have any rating scales completed and couldn't even get how my son was born correctly. His evaluation consisted of asking my son to spell DOG which he spelled "G-O-D" and whether or not he was sad that my father (his grandfather) passed away--which of course was yes. So the 'doctor' diagnosed my son with ADHD (though he again showed no signs of ADHD during the evaluation and no Connors scale was completed) and probably depression (secondary to the death of my father).  I went with it, not knowing any better, since at least it qualified him for an individualized education plan.

As his education continued, his writing was poor & his expressive language skills did not improve. He struggled in school when there was not a set routine but random activities. He became more anxious, to the point that they labeled him as a "behavior" problem and an "emotional problem" because when he was frustrated or anxious he would escape unto himself and ignore the classroom aide who would badger him. When he would shut down, no work would get done. He was labeled as willfully disobediant, defiant, and oppositional.  (Even in second grade with the Asperger's diagnosis)

Then I found Wrightslaw and SPAN and a whole host of other resources.

Now last summer after a long 7 month wait, we finally had our appointment with the pediatric neurologist at the regional children's hospital.  (An affiliate of CHoP) . I brought a list of questions, discussed my observations of sensory issues (as well as those of the occupational therapist and his pediatrician). My son's insistence on routine was obvious when I accidentally shuffled the songs on my iPod and he flipped out because the songs "were not in the right order".  We discussed what I had seen in my son over the years (his  his obsessions with time and science and sports and rocks), his social awkwardness, his fine motor difficulties, his impaired social interaction & difficulty with eye contact. The doctor could assess his pragmatic language and expressive language difficulties on a small scale. The doctor even asked to look at my set of questions to make sure he answered them all.  At first I didn't want to bring copies of all the assessments from the school (I was afraid of biasing the doctor's opinion), but I gave them to the doctor after he evaluated my son and discussed my concerns. He then said to me, "Your son has Asperger's Disorder but I think you already knew that." He was right, I did. He went on to explain why Asperger's was more appropriate than ADHD, Childhood Disintigrative Disorder, PDD-NOS (Pervasive Developmental Disorder--Not otherwise specified), childhood anxiety, or High Functioning Autism. 

In the end I think his reference to the school reports and his explanation how Asperger's may often look like ADHD in certain circumstances

When the report came back to his then primary care pediatrician, we had an office visit. She too was not surprised that my son was diagnosed with Asperger's Syndrom with sensory dysfunction. She suspected the diagnosis but felt that it was out of her scope of practice and expertise to diagnose. 

Sometimes I wonder if I could have had my son diagnosed earlier and perhaps got him into the "system" earlier such as early intervention or the preschool disabled program.  But I cannot keep worrying about the past, I can only go forward and work on today and tomorrow. Sure I saw signs of autism, social difficulties, and linguistic deficits for a long time, but I was not confident in my own parenting assessment and advocacy skills.  I cannot change the past. I can use my past experiences to help others. In fact I am thankful for my past experiences as it has made me stronger and a much better advocate for my son and others like him. 

Its funny now because when I meet certain people and professionals they are often in awe of my knowledge base and the vigor I fight for my child's needs.  I have had other parents call me for advice and tips to advocate for their child. If they only knew what I went through, how many tears of frustration were shed.

I was inspired to write this narrative by a post I found on the Thinking Person's Guide to Autism blog called The Keeper: A Tale of Late-Childhood Asperger's Diagnosis.  I realized that I was not alone.