Wednesday, October 23, 2013


Alex had a Dr appt yesterday to follow up since starting Ritalin.  His Dr dropped a bombshell on me.  He is taking ASD off of Alex's list of diagnoses because he feels he is no longer exhibiting symptoms of ASD.  It wasn't a total shock since I have been told before that he does not really "seem like a kid with ASD", although no one could really pinpoint his diagnosis so the original diagnosis of ASD stuck.  It's weird, 5 years ago if you had told me this diagnosis would eventually be dropped, I would have been so relieved!  However, since then I have learned so much about ASD and that a label does not define a child.  Alex is still "different".  He is still quirky and often says things that don't make sense.  He still needs to jump and swing way more than most kids.  He still has difficulty paying attention, reading and making friends.  His "label" now is ADHD.  However, he is still the same kid who had an official diagnosis of ASD 2 days ago.  He is still funny, sweet, smart, and uniquely Alex. 

Alex is having surgery on his ears next month.  This will be plastic surgery to correct ears which are very large and stick out.  I have mixed feelings.  We are doing it on the advice of his pediatrician and his ENT who both feel it is important for his social development, since his ears are quite pronounced.  I see their point.  A child who is "different" does not need something ELSE to make him a target of bullying.  However, I am wary of general anesthesia for what is not essential surgery.  This is one of those times when my husband and I have made a decision (to go ahead with the surgery) and then pray like crazy that we made the right one. 

Happy Halloween!!

Thursday, October 10, 2013


Yesterday Sara came home from school with a fever.  She was not all that sick but was not allowed back at school today because they need to be fever-free for 24 hours.  DH is in San Francisco and I HAD to go to work today.  We are already short staffed.  My wonderful mom offered to watch Sara at her house so I drove her up there yesterday.  It is about an hour drive away.  I drove her up there while the other kids were at school.  She was gone when they got home and of course all last evening.

This morning Alex said "Where is Sara?".  I was dumbfounded.  I know I had told the kids she was sick and at grandma's but maybe he was not there when I told them?  He honestly had no idea where she was and even  more disturbing, he hadn't noticed she was gone until this morning.

We always joke about Alex being oblivious and "out of it" but this just slammed it home.  How can a 10 year old be this oblivious to his surroundings and activity/life going on around him?  I find it scary for his own safety.  He is so unaware.  He is the opposite of kids on the spectrum who hate change or who have to have things a certain way.  He barely notices change and does not care one bit if things are changed up.  I once changed around all the furniture in his room and he barely noticed that.  It scares me.  I don't know what to make of it.  I don't know what it "means" or if it means anything.  There is tons of information about kids who are inflexible or hate change and how to deal with it.  But not so much on kids who are completely oblivious to much of what is happening right in front of them and who don't even notice even rather large changes.  I am at a loss.

Tuesday, August 13, 2013

Summer and something new to try

When I took Alex for his physical this summer I had a pretty long talk with the pediatrician about his year at school.  I had brought along the comments from his report cards and IEP.   Over and over: "Not handing in work", "Not completing work", "Not following directions", "Not paying attention".  Nowhere does it say that he is not capable of the work or that he doesn't understand or that he is below grade level.  To make a long story short, the doctor really wants him to try Ritalin.  Gulp.

Alex was prescribed Ritalin a few years ago when he was about 7 and I never filled the prescription.  I felt he was too young and was only in 1st grade.  However, now he is almost 10 and will be in 4th.  He really needs to be paying attention, completing work and handing things in.  I am not a big fan of this type of medication and do feel that it is overprescribed.  I am constantly amazed at work by how many patients (children and adults) are on Ritalin or some other ADHD medication.  It really is staggering.  However, Alex is a child who very clearly has ADHD symptoms quite severely.  In fact, that was his diagnosis when we took him to Kennedy Krieger for an evaluation: Severe ADHD, not ASD.  I am willing to try it to see if it helps.  And I do have some previous experience.  Our oldest son who is now 15 was diagnosed with ADHD at age 8.  His symptoms were less severe than Alex's and his social functioning was much more mature.  He was extremely hyperactive and unable to sit still.  He is still like that but year round sports has helped.  He was on medication in grades 4 and 5 and has functioned fairly well without it ever since.  Still, he is the only person I know who paces while he reads.  The meds did help him.  His grades improved dramatically and he was able to play with his friends better.  He would interrupt them and tire of whatever they were doing very quickly.  The medication helped him "chill" a little and it was good thing for him socially.

So..we will see what happens.  I know Ritalin won't help him socially (although it may help him pay more attention to his peers), it won't help his sometimes labored speech and reading and it won't help his sensory needs (which are still quite extensive- he is a sensory seeker).  We have done years of therapy which has now come to an end.  Maybe this is the next step for him. 

Sunday, May 19, 2013

The end of 3rd grade

Alex is almost done with 3rd grade.  Funny, when he was small and going to his special ed preschool classes I wasn't sure we would ever get here.  I had such a hard time imagining him at this age. 

This year he played soccer in the fall and spring.  He played basketball in the winter.  He did pretty well with both sports.  I feel like (in addition to the exercise) team sports are good for him.  He is practicing listening (to his coach and his teammates), he is learning to work collaboratively, he is having to communicate with his teammates, he feels as though he belongs. 

He has been playing with 3 other boys in the third grade.  One is a neighbor who comes over about twice a week.  He and Alex play pretty rough - they play on the trampoline and they play dodgeball.  It is good for Alex to expend his energy with another child who is not intimidated by his roughness.   He also plays with a boy who really only wants to play on the computer.  This is ok, it is only once a week or so.  It is their thing and I am OK with it since it is not too often.  The third boy has Asperger's.  He is more affected than Alex.  He is older than Alex although in his class.  Alex seems to show him how to do things.  It is interesting watching them play.  They do a lot of swinging and jumping on the trampoline.  Not much game playing or talking. 

Alex has struggled mightily with paying attention and staying organized at school.  I have gotten numerous calls from the special ed teacher about this throughout the year.  He is oblivious to much that is going on.  It is hard to know how to help him since I am not in school with him.  I try to help him keep his homework folder and backpack organized but I cannot be there to remind him to pay attention or to write his name on his paper or to hand things in! 

Although I have avoided it so far, I have made an appointment with the ADHD pediatrician at his pediatrician's office and I am open to trying some medication.  He is really struggling.  I do hear a lot of comments from people like "ADHD doesn't really exist" and "People should not drug their kids".  However, I am open to trying this to help him.  Not to make my life or the teacher's life easier.  He is not in a special school or a special classroom.  He is mainstreamed in a "regular" classroom and has to perform all the same tasks as the typical kids.  And he is struggling, have I mentioned that??  He cannot follow more than one command.  For instance, I can say "Go get your shoes on" and he MIGHT do it.  More often, I will find him distracted by the cat or a toy or a pencil.  He cannot follow 2 commands like "Brush your teeth and get your pajamas on".  He is well over 9 years old.  He should be able to do this, but cannot.  Is it any wonder he is having trouble in a typical 3rd grade classroom where they are expected to do multiple tasks on their own without being reminded? 

Did I mention he loves to run? His uncle took him to a fun run and he won!  He also came in 3rd in his whole school for most laps run during the school's jog club in April.  He has boundless energy.

I am looking forward to summer and the end of homework!

Tuesday, March 5, 2013

3rd Grade

I know I have not posted in so long.  What can I say?  I have gone back to work in nursing and after taking care of patients at work and coming home and taking care of my own 4 kids, I am exhausted most days!  I am glad to be back at work, I did miss it.

One thing that I feel guilty about, however, is not being able to volunteer at school or be involved at school like I used to be.  This has been kind of a tough year for Alex.  They say that in 3rd grade the focus goes from "learning to read" to "reading to learn" and that this transition is difficult for many children.  Alex is having a hard time with the new demands: note taking, book reports, geography.  Mostly, though, he struggles with just the "housekeeping" of school: remembering his name on his paper, remembering to turn things in, remembering his homework, and yes, even remembering to go straight to class from the bus.  He has 13 (THIRTEEN!!) tardies because he does not go right to class from the bus.  On top of his difficulties, we are strapped with a teacher who apparently does not think it is important to communicate with parents.  Extremely frustrating!!!

Alex takes it all in stride.  He has 2 friends who come over to play regularly.  He just finished basketball (he is a great defensive player) and is ready to start soccer.  He still loves to swing and jump on the trampoline.  We got him an inexpensive laptop for Christmas and it is his pride and joy.  Best investment I ever made.  We also recently found out he has asthma and he is independently using his inhaler and taking his other new medications with very little guidance from me.  It is amazing to me how much he is capable of when just given reminders and a little guidance.  Makes me wonder what is going on at school sometimes!

I hope all is well with you my friends! 

Monday, June 25, 2012

Concrete Thinking

Anyone who knows someone on the spectrum recognizes one of the hallmarks is concrete thinking.  Sometimes it is kind of funny.  On vacation at the beach last week Alex wanted to leave the beach house and go to the beach.  I said he had to find his aunt who was already there so an adult would know he was down there.  I said "If you can't find Aunt Lucy come back and wait for me to take you."  He said "OK!" and went running down the steps, only to turn around and say "What do I do if I find her?" 

I am thinking the average 4-5 year old would not need an explanation of what to do if he found his aunt.  However, at almost 9 Alex needed to ask.  There is a definite deficit with abstract thinking and inferencing.  We do inferencing activities at home which he does pretty well on for the most part, but using those skills in real life is sometimes a challenge.  Sometimes it makes for a chuckle!

Sunday, June 10, 2012

The Start of Summer

Summer has begun and now that I have a job I have to find childcare for the first time.  It is a real challenge!  I have been busy for weeks trying to cobble together childcare for my two youngest and I only work part-time!  They will be doing some camps and I have some babysitters and help from my mom. 

I have been pretty diligent about keeping Alex engaged and not letting him just go off by himself a lot.  He played soccer again this spring and had twice weekly playdates with a boy in his class.  I try to take him with me when I run errands as much as he will tolerate and engage him in the tasks of grocery shopping, going to the library, taking the cat to the vet, etc.  I try to use the conversation techniques we learned in RDI.  For example, rather than asking him yes/no questions, I make statements for him to respond to or ask open ended questions.  This "forces" him to make natural conversation and use his language skills.  He is doing much better with this.  He still struggles with "echoing" what he said and eye contact.  Eye contact does not come naturally to him and he has to think about it each time he talks to someone.  He does not like it when people get too close.  When his friend runs up to him at the bus stop as boys do, Alex shrinks away from him and often wants to wait in the house for the bus.  Too much commotion at the bus stop.  Interestingly, he is fine with "wrestling" and rough-housing type games so it is not the contact he doesn't like.  He just doesn't seem to like when people "come at him".  I have noticed this in him since he was very small. 

He has new interests now that he is getting older.  He loves Star Wars, basketball, sharks, and chess.  I try to explore anything he is interested in in any way I can and from those interests, try to introduce him to others.  My goal is to keep him engaged, communicating and asking questions.  It is so easy for him to slink off and spend the whole day by himself on the trampoline or rolling around on an exercise ball.  He is very much able to stay engaged and play and communicate nearly as well as other 8 year olds.  It just does not come as naturally to him.  And he does need breaks from activities and people.  This is when I find him rolling around on his exercise ball.  He will tell me "I need to be away."  I am glad he can communicate this need to me.  There was a time when he could not. 

He is officially done with the early elementary school years as he begins 3rd grade in 10 short weeks.  I have been somewhat sad to watch all my kids grow up out of the little kid stage.  I am finding it all that much harder with Alex.  We have been through so much together through his early childhood years!  Yet I see him pulling away and yearning for independence.  It makes me so happy and so sad at the same time.