Tuesday, December 28, 2010

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)/

Saturday, December 25, 2010

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?

Friday, December 24, 2010

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, December 20, 2010

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.

Wednesday, July 21, 2010

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.

Wednesday, July 14, 2010

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.

Tuesday, July 13, 2010

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.")

Saturday, July 10, 2010

My son has a 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, July 9, 2010

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.

Thursday, July 8, 2010

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.

Wednesday, July 7, 2010

My Almost Wordless Wednesday..beautiful butterflies!

I wish I had my camera with my this morning when I dropped my son off at baseball camp. He wanted me to take a "breathtaking" (his words) picture of the sun rays beaming through the clouds over the field.  It was truly a beautiful sight that I am sure won't exist when I return after lunch to pick him up.

Anyhow, his class took a field trip to the Academy of Natural Sciences in Philadelphia, one of the stops was the butterfly room. Even though it was 80F with like 1000% humidity, the beauty made up for the sweat produced.  My son was fascinated not only but the up close and personal look at butterflies, their chrysalis, and the poison dart frogs, but also the beauty of the vegetation. These are two of the butterfly shots we took. Sometimes if you stood still, the butterflies would come and sit on your shirt or arm or backpack, or leg.

Tomorrow hopefully I can get my son to sit still long enough to snap a picture, but my son got a sensory friendly haircut. You just have to see it.

Monday, July 5, 2010

Forth of July....

July 3rd my son turned 8.  For quite some time my son has been asking for a faux-mohawk haircut. Well he got his wish on Saturday morning. Even cooler the girl who gave him his first haircut at 15 months was working (different shop but same stylist). She commented how much he has grown & changed.  When he had his first haircut (and for sometime after) my son was deathly afraid of vibrations. Since he has a lot of hair thanks to genetics, it would take forever to scissor cut his har and the clippers were much faster. We had figured out a way that I'd hold his head still & she'd clip--very quickly I might add. He screamed, but was much happier when he got a lollipop at the end. Now he doesn't mind the clipper, especially if he gets color added (usually green) to his final style. It's tough for him as he has to look straight ahead--into the mirror (not his favorite place to look).

He looks adorable. I'm still questioning my judgement, but I figure we could always buzz the strip if necessary. 

Sunday was the townwide Forth of July parade. Dogs dress up. People dress up. Bikes, scooters & wagons are decorated. The firetrucks & ambulance participate. At the end is a "comfort station" manned by the borough recreation committee stocked with themed trinkets, ice cold water & lemonade and patriotic ice pops.  My son found a few of his friends participating. He went off with the front of the pack as I stayed behind to march with my crazy dogs.  My puggle was worn out (it was 95F in the shade!) and my chihuahua (being very heat tolerant) was thrilled with the chance to strut his stuff. Since the firetrucks blare their horns & sirens, my sound sensitive son went to the front (about 3 blocks ahead of the trucks) to dampen the sound. At least the trucks are smart enough not to blow their horns near the end of the route. His bike helmet helped to dampen the sounds.  He did an awesome job on his scooter decorations (purchased the night before for 50-75% off for a total under $5).

After we cooled my son & the dogs off, we picked up a buddy and headed to the movies. We always sit in the back so the picture isn't too large on the screen and the sound isn't too much. The best part is that the elderly couple sitting in front of us looked disappointed when we sat behind them, but complimented my son and his buddy on their good behavior at the end of the movie.  After dinner at Chili's we played for a while at my mom's house.  Fireworks were tolerable, as this year we went to the beach between TWO displays. We were far enough away that the "booms" were more like finger snapping. No sensory overload or meltdowns for my son. Though I am concerned about his social skills. Due to the treatment by a few opportunistic bullies (who are slick enough to appear well behaved in school, but didn't fool the parents who lead our scout den at camp--the one other mom declared this boy a mean spirited little annoyance. I felt validated that she saw what I did without my pointing it out.) He tries to dominate his shorter friends, fortunately this buddy is pretty smart & a good sport (though he too has his crabby moments). I gave him some tips to help my son be a better friend, such as telling him exactly what is wrong like "when you call my name like that you sound like my father. You aren't my dad, you're my friend."  Social skills group doesn't start for another week. Hopefully I can undo the damage from 2nd grade at the school from hell in the mean time...

Wednesday, June 30, 2010

Almost Wordless Wednesday...

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

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

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

Friday, June 25, 2010

Some things just can't be hidden...

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

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

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

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

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

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

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

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

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

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

Wednesday, June 23, 2010

Almost Wordless Wednesday Part 2...

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

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

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

Almost wordless Wednesday...part 1

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

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

Monday, June 21, 2010

Why dogs have been the greatest therapy yet...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, June 16, 2010

The fine line, my fear..

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

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

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

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

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

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

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

Thursday, June 10, 2010

Update to mom driving me nuts...

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

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

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

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

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

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

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

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