Charlie Party

October 28, 2009 by · Leave a Comment
Filed under: Charlie 

I’m on my way to a small party for Charlie in his classroom at his school. He gets a party for moving up a level in the Cascade special ed program.

He also had his 3 year evaluation, and his diagnosis has changed from “Developmentally Disabled” to “Health Impaired.” I have no idea what the difference is – can anyone clue me in?


Charlie Update

January 26, 2009 by · Leave a Comment
Filed under: Charlie 

New post on AllAboutCharlie.com = Results I got today from his neuro testing two weeks ago.

I must say I’m not thrilled that they weren’t more helpful.  But it furthered my opinion that his senosry issues are causing his ADHD symptoms .

So much so that I came home and Googled my idea and found that I’m not the first to have this idea.  There is a book called The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz.

And it is specifically about how ADHD is often mistakenly diagnosed (and drugged), when it’s really a sensory integration disorder that is causing discomfort and thus fidgeting and being easily distracted. I will definitely be pursuing sensory integration therapy before I consider adhd drugs again for Charlie. I don’t think they were right for him, and I often thought they were detrimental.


Charlie The Navigator

January 13, 2009 by · 2 Comments
Filed under: Charlie 

This morning Charlie and I were outside waiting for his bus, as usual.  And it got to be late, then later, then – “Ok, I’m calling dispatch, ’cause it is like way late now…” 

It turns out that the main road the buses are dispatched onto before heading out to their routes was basically a parking lot due to an accident or something, and it was going to be at least another 20 minutes before the bus got there.  So I decided just to drive Charlie to school, which was cool.  I had somewhere I had to go after he left, anyway.

So we headed out, and I realized I had to go on the same road that was basically a “parking lot” to get him *to* school.  I was a little bit worried, but I figured the traffic wouldn’t be a dead stop going both ways, and I was going the opposite direction the bus would have been, so figured it would be fine.

So I headed to that road, and on the way I passed an interstion of a road which, in the past, I had suspected would be a “short cut” to Charlie’s school.  But I’d never had time to really go exploring, so I didn’t know for sure.  But as we passed the intersection, Charlie said, “Mommy, you’re going the wrong way.  That’s the way to school – you passed it!”  Aha… so that is a shortcut from our house when going that direction after all!

The next intersection was the gridlocked one in question, and wow – it was a parking lot BOTH directions!  So I turned around and headed back to the street Charlie told me to turn onto and headed that way.  When I got to the street his school was on, I wasn’t sure if we were to the left or the right of it at that point, thus didn’t know which way to turn.  So I just asked the six-year-old navigator which way to go.

He said to turn left, and he’s always been good about knowing what city we’re in when we’re out & about and when we’re close to Donna’s house, etc., so I decided to believe him.  Plus, he had been that way before on the bus, and I hadn’t – so it made sense he would know.

And he did!  It was so cool, because he was so proud of himself.  Thanks to him, we got him to school on time (a little early, even) and he had the best day at school!  He was telling his one-on-one aid about how he knew the way to school and told Mommy and everything and just seemed so happy and proud.

When he came home, his daily report showed that he had had a really good day at school.  Maybe I should set up little easy-to-win challenges for him in the morning from now on.  Just to get him feeling good about himself and excited about the day.  It certainly seemed to make a difference today.

Plus, I was really impressed he directed me to school!  We probably would have sat in traffic for at least a half an hour if it weren’t for him being aware and knowing how to get to school. I was proud of him!


Spending Money To Make Money

June 8, 2008 by · Leave a Comment
Filed under: Charlie 

In a move that might seem like a step backwards, I am going to put Charlie in daycare again.  But it’s only going to be for 3 days a week this time.  I can’t work with him around (as has become obvious), and I’m falling behind in my work.  That is not good!

So to make money, I’m going to spend money on daycare.  The reason this is ok with me is that by putting him in daycare 3 days a week, I will be able to make enough that I can take the rest of the week off and spend with him.  Right now I have NO free time and spend very little quality time just with him, because I spend all my time trying to work while he is constantly pestering me for attention, getting into trouble, spilling or breaking things, needing food, bathroom help, etc.

There is nothing wrong with him doing any of that.  But it only allows me about 12 minutes per hour of real work.  So I wind up entirely inefficient as a parent and bread-winner.  I think the phrase is “spread too thin.”

So I’m going to get him signed up this week, hopefully, and soon be able to achieve some sort of normalcy.  My house is almost completely put together from my move.  Now I just need to get us settled into a routine so we can both thrive!

I think this is going to be the key to making my business endeavors work AND making Charlie and me a lot happier.  Who knew that sending him away 3 days a week would result in our getting to spend more time together?


Charlie and a Cow

May 4, 2008 by · Leave a Comment
Filed under: Charlie 

Ok, yet another post today. Here is Charlie and a cow we saw today. He was asking about the udder and now knows where milk comes from!




Video of Barack Obama Shaking My Son’s Hand – Boone Iowa

April 17, 2008 by · 1 Comment
Filed under: Charlie 

I can’t remember if I’ve shared this before – I don’t think I have. I attended a rally for Barack Obama on December 31, 2007 in Boone, Iowa, so that I could write this story for Associated Content.

Here’s the video – It’s pretty cool!



Or Maybe He’s Not…

February 27, 2008 by · 2 Comments
Filed under: Autism, Charlie, Fragile X, just life, Motherhood 

This is my last post on the “whether” and the “why” when it comes to Charlie.  I will still write about him and our challenges and what we’re doing to work on them.  But I’m going to stop wasting time and energy on finding a label and a definitive answer.  For some, maybe there just is no specific label and set of “rules.”

Since this is my last post on the subject, it will be a semi-long post.  Feel free to skip it if it doesn’t interest you!

The reason I’ve changed my mind, yet again, is because of the parent-teacher conferences I had today with Charlie’s teachers.  When I brought up the Fragile X test and autism to Charlie’s special ed teacher, she said, “I don’t see that.”  And she is a person who has earned my very high opinion of her.  She said she does see most of the behaviors I am talking about, but the “social” portion just doesn’t fit someone who is autistic.  And that is the part I had doubts about myself.

It has been, and still is, so unbelievably frustrating trying to figure out what is afflicting my poor child and trying to help him.  So I have decided just to stop worrying about “what” it is and just put all my energy and time into treating the symptoms.  Autism, Fragile X, and “Pervasive Developmental Delay Not Otherwise Specified” are not curable, anyway.  All you can do is treat the symptoms.  So my thinking now is that I don’t need to worry about a label.  My time and energy is better spent treating his symptoms, so that is what I’m going to do.  I have a plan and a re-newed vigor and excitement about things I can do to help him, which I plan to write about in a separate post.

So, back to the parent-teacher conferences…  (He is in kindergarten in the morning, with a Special Ed helper just for him, then a PATHs class [social development], and ECSE [Early Childhood Special Education – or special ed pre-school, to put it another way] in the afternoon, along with a speech therapist, so there were lot’s of people to meet with today!)

His Special Ed pre-school teacher said that he is doing great and has met all the goals she made for him, as written, for the entire YEAR.  Everything from here on out as far as her work with him is “over and above.”  So that was really great to hear.

His speech and language specialist said that he had met his goals for this tri-mester and was on track to meet them for the year.

His PATHs (social development) teacher said that he is doing better but still struggling.  He has a hard time in his interactions with other kids and a very hard time dealing with his frustration-which leads to anger-which leads to tantrums and yelling.  He is not meeting his goals there.  She is wonderful and patient, fortunately.  I believe he will continue to progress, but his problems in this area may lead to some big problems in the next school year.  I’ll elaborate about that a bit later.

His kindergarten teacher showed me his work and had some good things to say, but this is where he is clearly way behind all the other kids.  In comparing his letters and his attempts at writing words and sentences and things, he has improved since the beginning of the year.  But he is nowhere near where the other kids are.  Nearly everything on his report card is “needs work,” though he got a few “progressing,” and a couple of “meets goal.”  And every single area was asterisked with “With help” or “With modifications.”  He doesn’t do any of his work alone and on his own.  And all the other kids do.

I know I shouldn’t compare, but just to illustrate, there were little stories on the wall that the kids in his class had written about a picture of a snowman.  Most were faily neatly-written and spelled right for the most part and had several sentences.  His was a bit scrawled, with a couple of backwards letters and was only two sentences – basically describing the snowman – saying that he was wearing a hat and was a snowman.

So anyway, he is sure to be in kindergarten again next year.  And he is a July birthday (he is now 5-1/2), so he will be the same age as many of the other kids in that class anyway.  But there is another wrinkle, and I haven’t decided just what to do about that yet.

The school he goes to now mainstreams Special Ed kids with a helper in the classroom for them.  They don’t even have facilities or a system for segregating the Special Ed kids.  So before I told them that we were returning to Seattle in June, they started priming me for the idea of sending him to another school.

They were telling me about other schools in the area with Special Ed classes that were just Special Ed kids, segregated from the rest of the students.  Due to his difficulty in progressing in the social development area, they feel he might “do better” in a different setting.

For the most part, I like his school and the teachers.  But this little bit is just b.s. to me, for two reasons.  First, they have pushed very hard for trying Ritalin for him.  Second, his kindergarten teacher.  I don’t want to say for certain, but I got the idea from the very first day that she didn’t like Special Ed kids in her class.  I feel she is against mainstreaming and doesn’t like anything that is out of the ordinary or the least bit of a challenge.  I do not get that vibe from anyone but her.  But I do get the vibe from other teachers that they get feel the same way, but can’t really say anything.

So, not to wax on about that – because it would be a waste of energy – I’m just a bit worried about the recommendation they will make for Charlie for the 2008-2009 school year.  I agree with the recommendation that he should repeat kindergarten.  But I do not necessarily agree he should be segregated.

I am going to have to think about that one a lot.  In the meantime, there is a whole ‘nother tri-mester of school left for him to make progress in, and they do recommend him for summer services, so there is that.  Then there is the plan I have to pro-actively treat his symptoms and try any and every alternative method I can to teach him, and just throw away normal thinking on how to teach a kid to develop their language and read and write and figure things out.  He needs a lot of help with emotions and with his fine-motor skills, too.  So we will work with those.

He is great at drawing and figuring things out in video games.  He does really well with visual cues.  He has great spatial ability and is extremely imaginitive.  He carries on extended conversations with imaginary friends (not just one) making up little stories to tell them, etc.  He remembers everything, even from years ago.  He has a lot of positives to work with.   He has an amazing personality, is very charming, very funny, likes to make people laugh (there’s the social stuff that does not seem autistic), and is the cutest kid ever.

Here are some of the many reasons I thought he might be autistic:

He was diagnosed with “Sensory Processing Disorder” in 2006, which is almost always seen in people with Autism (He was diagnosed and declared as “Learning Disabled” at that same time, and I was told that he is protected under the ADA – Americans with Disabilities Act)

He does “stimming” (making on-going, loud, humming-like noise to zone out after being over stimulated) for a long time a few times a day

Hand-flapping

Spinning obsessively while watching his hands

Notices every little noise and movement – and is overly-distracted by it

Obsessed with lining things up (putting all his toys in a line instead of playing with them) – he has rarely ever played with toys the way they were meant to be played with – he just uses them for props – mainly to be lined up!

Severe tantrums beyond the usual age (he still has them)

Needs routine or goes “ballistic” (changing routine results in one of the following: tantrums or an extended period lining things up – and they have to be perfect or a tantrum will still happen)

Echolalia – Saw speech as ritual to be repeated and not as communication.  He would simply repeat back to you what you just said,  “What did you do at the park?”  “The park.”  “No, what did you DO at the park?”  “DO at the park!”  That was up until about 10 months ago….

Severe speech delay – resulting from – what?  That is the biggest mystery.  Is it the echolalia?  The impaired sensory processing?  He could not communicate conversationally until about 10 months ago.  And has only really recently started having what I would call a semi-complete, satisfying short conversation.

Many other developmental delays and all the “red flag” hallmarks of autism, including hand-flapping; extreme fascination with ceiling fans, door latches and hinges, light switches, etc.; not able to pedal a tricycle until about 9 months ago; extremely poor fine and gross motor skills; avoidant eye contact when much younger….

The list goes on, but it was significant.  And I wouldn’t even care about all those little quirks, which I consider endearing, actually, if there hadn’t been the significant delays behind them that made me concerned that he would never fully develop speech and be able to learn new things.

The speech and language-comprehension delay causes SO many problems.  He was still in diapers at the beginning of this school year.  He only became fully potty-trained about 2 months ago.  It has prevented, or created a huge challenge with, my teaching him anything new at all.

But now that the speech has kicked in, and is actually developing, I am encouraged quite a bit.

So, no matter whether it is autism or PDD-NOS (Pervasive Developmental Delay-Not Otherwise Specified, which is what they call someone with a lot of autistic traits and developmental delay who does not meet all the criteria for autism), it really doesn’t matter to me anymore.

He is his own little unique Charlie, and he has his own special challenges.  And that’s all there is to the “whether and the why.”

End of that chapter!


I Was Doing It Wrong – He Is Autistic

February 26, 2008 by · 2 Comments
Filed under: Autism, Charlie, Motherhood 

I got Charlie tested for Fragile X because he had many autistic behaviors/problems and some physical features of Fragile X.  Fragile X often causes a lot of autistic behaviors but is not the whole story so I thought would have him tested for that.

I found out today that he does not have Fragile X syndrome, so I started researching autism again.  I have researched it a lot over the last two years, because that has seemed to be what is going on with him.

I kept thinking that Charlie had all the criteria for autism except the non-social part, but I never bothered to read the directions for the DSM-IVR, which tell how many critera need to be met for a diagnosis.  I thought they ALL had to be met, when actually it is just 6 – With at least two being from group A and and at least one each being from groups B and C.

Charlie meets plenty of the criteria and then some.  His doctor diagnosed him with “Autistic Features” in January, but I think a specialist is required for a full diagnosis.  I will do that when we get back to Seattle this summer and find out about any and all help available for him.

From this point forward, I know I know what I’m dealing with – He is autistic.  I know “why” – because he is Charlie and that was the cross he was given to bear.  I don’t know exactly how to help him or whether he’ll ever be “thoroughly ok,” but knowing what I am dealing with gives me a good start.

It has been a real nightmare not knowing what’s wrong, then thinking I knew, then not, then thinking I did – back and forth ad nauseum.  But now I know and I can put all my energy on how to help him as opposed to just wondering and worrying all the time.


Sweetie Pumpkin


Mother’s Against Nature

February 20, 2008 by · Leave a Comment
Filed under: blogging, Charlie, Iowa, Motherhood, Weather 

They did not cancel school today, despite a wind chill, when I woke up, of 37 DEGREES BELOW ZERO.  Whatever.  Whatever you have to do to keep your little school district going.

But as a MOTHER, I could not, would not, will not, do not send MY CHILD out into the world when it is 37 DEGREES BELOW ZERO.  Never ever.  No apologies.  Nope, will NOT do it.  Nothing is worth that.

I can NOT imagine the parent that thinks it is ok to subject a child to that for 2 hours’ worth of kindergarten on a shortened day.  Nope.

This Mother kept her child home, warm, safe, and happy on this day, February 20, 2008, when the wind chill reached an official 41 below zero.

Send my five-year-old out in that?  You have to be fucking KIDDING ME.  He wins.  You lose.  Go away.


Charlie & Mommy Being Silly

February 17, 2008 by · Leave a Comment
Filed under: blogging, Charlie, just life 

This started out to be a video to send to my friend Lori, but it turned into kind of a fun little peek into our world, so I thought I would blogify it, and share it with the world for the sake of posterity!




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