Or Maybe He’s Not…

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

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.

Mother’s Against Nature

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.

With Bells On, Sweetie Pumpkin….

Charlie brought home an invitation from school for his first ever school play.

 I’ll be there, kiddo!

Looking forward to it like you don’t even know!

OMFG

I just realized that I moved to Iowa and have been baking apple pies and watching Desperate Housewifes and going to parent-teacher meetings and stuff…..

 What happened to ME????

Why Didn’t Someone Tell Me?

If your child is disabled and requires diapers after the age of three, the diapers are considered a medical necessity and can be claimed on your medical insurance.  I have spent approximately $1600 since Charlie turned three on diapers.  (He is now over five years old – they cost about $15 per week.)

Fucking A.  Well, maybe this information will get to someone else.  I could sure use $1600 – I paid enough in insurance premiums, ya know…..  t’aint fair!

Charlie Is Autistic

Ok, I’ve squashed the last bit of denial that was keeping me from seeing that Charlie is autistic and have finally resigned myself to it.  Honestly, not fully knowing it until now has been for a variety of reasons.

 A G.P. won’t diagnose autism – only refer them to a specialist.  And my G.P. referred Charlie to a specialist last year, but I could never get them to call me back.  Soon after that I moved, and since then I haven’t had insurance.

But he had had a screening with the Special Ed people in Redmond.  Guess what?  They won’t diagnose autism either.  The most they would say was that “there is something organic going on with him,” and gave me a book on sensory processing disorder.

Then I moved to Iowa and got in touch with special ed here.  They referred me to Early Childhood Special Education and Charlie was enrolled in special ed preschool.  I thought it was interesting that they would put him in with autistic children, but it seemed like a good fit, and they said they felt optimistic that they could work with him.

He has made some really excellent progress in the special ed presechool.  But he still has so many problems that I have been researching autism after some comments by the people at daycare.

 My findings showed me he had PDD-NOS – which is a diagnosis when a child has MOST of the symptoms of autism.  I was still holding out….

 The main symptom he did not seem to have is the “non social” symptom, where the child doesn’t make eye contact and doesn’t want to be held and prefers to play alone.  Well, it turns out that is criteria for younger children.  And he did have those symptoms at the appropriate age.  Very limited eye contact and only would only tolerate being held if extremely tired or sick.  Even when he got hurt, what he mainly wanted was his Clifford (object over person).

He has all the other symptoms, and I have pictures and or video of all of them.  I just thought they were his own little unique quirks.  Just Charlie being Charlie.  But thanks to a (leading) question by Charlie’s teacher about whether his eye contact was improved from toddler-hood to now and whether he used to like to be held, I now have my answer.

Lately I’ve been searching on autism in youtube after seeing a picture in wikipedia of a child who had lined up all of his toys in a straight line and then fallen fast asleep next to them.  That was my kiddo (figuratively-speaking).  That was not a quirk as I had thought – that was a symptom.

So was the hand-flapping, spinning (without getting dizzy), developmental delays, language delays, “zoning out” with glassy eyes (which I have taken several pictures of because I thought it was so cute he had such a serious expression on his face), severe tantrums through age 4 and beyond, inability to pedal a tricycle (classic symptom), sensory processing disorder (what I thought was a diagnosis was actually a symptom within the syndrome), fascination with doors, light switches, ceiling fans (extreme fascination), need for routine, repetition, echolalia in speech (repeating what you say or saying what he thinks you will say and seeing speech as a ritual and not as communication), delay in potty training (we’re still working on it at age 5), and etc. and on.  He’s got them all.

It’s eerie to search on autism symptoms on you tube and basically see my child with different faces – meaning, children doing exactly what Charlie did.  And to see that it’s a symptom and not a quirk.  There is also something strangely calming about it.  For years I’ve known that something wasn’t right.  At least now I know what it is and that he’s not alone.

The only thing I don’t have right now is an official diagnosis, but that will come as soon as I get insurance again (very soon), and get him to a specialist.  As recently as a couple of weeks ago I was still in denial, and I wrote an article for Associated Content about his PDD-NOS.  I even made a post last week or so and referred to his problem as ADHD.  Well, it ain’t….

It’s autism.  And it scares me.  I’ve seen children with autism who are definitely much worse off than Charlie.  I’ve also seen children with autism who are definitely much better off than Charlie.  I’ve also seen normal children his age, and my heart drops into my feet when I realize that he is missing a normal childhood.

And although I wouldn’t trade him for anything, and everything he is makes him so special and unique, I really fear for his future.  Not only will he miss a normal adolescence and adulthood, it’s not known if he will ever achieve any sort of independence.

And I am an older parent and will definitely not be around forever.  Pretty much every hope and dream I had in life beyond having children is gone (don’t read bitterness into that – it’s a whole other subject) and has been replaced with hopes and dreams for Charlie to reach adulthood and be able to exist with at least a bare minimum of independence and hopefully a trust fund to carry him.  And the sincere and desperate wish that those who care for him after I am gone are caring, honest and have his best interests at heart.  Mean, uncaring, opportunistic people take advantage of many of us fully able-minded people.  I fear Charlie’s running into one of these as an adult without me there to protect him.  But then, that is wayyyyyy into the future.  (But that is pretty much my worst fear and what haunts me at night.)

So, my beautiful Sweetie Pumpkin is not what I thought he would be.  He’s not even who I thought he was a few weeks ago.  But he is very special (and I don’t mean that in a “special ed” kind of way), and he is very beautiful, and he is my son.  Period.

Here is a picture of Charlie with the “garden” he created out of refrigerator magnets. If you look closely, you can see a house (an “a” is its roof), the sun, some flowers with other magnets coming away from the middle as the petals, and the ground with tree trunks and such on it. He was EXTREMELY proud of this. No one gave him the idea to do this – he just did it out of the blue one day:

Sometimes I’m Thankful for ADHD

Tonight Charlie and I were watching TV and had this conversation:

CHARLIE:  Mommy, I’m sad.

ME:  Why are you sad?

CHARLIE:  I want my Mommy

ME:  I’m your Mommy, I’m right here.

CHARLIE:  No, I want my Daddy.

ME:  Oh.

CHARLIE:  Where is he?

ME:  He is way far away.

CHARLIE:  Can we go see him?

ME:  No, sweetie, we can’t.

CHARLIE:  But I want to.  What’s that?

And he points to a robot on TV, and that’s the end of that conversation.

 I’m sure it won’t always be so easy to wrap up that conversation, and there’s a lot of painful realization to come.  But thank God that was it for now.

Apples and Pies and Parks and Trains!

Charlie and I have been having a great time this fall. A week ago Friday I bought a large amount (a “peck?”) of Jonathan apples from an apple orchard here in Iowa. Since then we have eaten a lot of apples every day, plus I’ve made an apple pie (never made a pie before!), apple sauce and today I made apple crumble. There are just a few apples left that I think we will eat (as opposed to using in a recipe). Then I’ll probably get one more “peck” before fall is over. Anyway, we also went to the park last weekend in Dexter, Iowa, and to see some trains this weekend in Boone, Iowa. Here are a lot of pictures:

The Effect Of Motherhood On Clothes Shopping

When I go shopping, I usually have my learning-disabled (yet very energetic and curious) child with me.  This means that most of my trip is about the process of teaching him how to behave in public.  This means that most trips feel like an exercise in frustration and futility (not to mention the un-ending judgement of strangers who don’t know what I’m up against, but I’ve learned to ignore that for the most part).  However, he actually has made progress over the years (he is 5).   So I know it’s not truly futile – it’s just a very long process.

 ANYWAY, this leaves me very little time for actual shopping.  Therefore I basically shop with a list.  The higher-priority items are at the top, and if he becomes too hard to handle, we just pay for what we have and get outta Dodge before he goes completely ballistic.

 Sometimes, however, I get optimistic and actually try to clothes shop for myself.  For me to take the time, with child in tow, to actually try something on, it has to really grab me.  So I limit myself to five minutes of grabbing what grabs me and head for the dressing room.

 I then try items on with a one-minute time limit for each item – which includes putting the item on and taking it off.  Which leaves about 30 seconds for making my decision.  If it looks decent and I like how it feels, it’s a “yes.”  If I have to question it at all and look at longer in order to make my decision – well, that makes my decision for me.  It means I don’t like it, and it’s a “no.”

 With this method, surprisingly, I rarely get home with things I wind up having to take back.  And while I’d like to do some more in-depth shopping, I’ve learned it’s not really necessary.

I’ve found that the effect of Motherhood on clothes shopping is this – a lesson learned in efficiency that extends beyond Motherhood.  In other words, nowadays, even when my child is NOT with me – I use the same method in the dressing room.  If it doesn’t immediately shout “yes” at me, it goes in the “no” pile.

Thusly, I can go shopping, get it done, and move on with my life.  I have tried extending this to other portions of my life as well, with varying success.  Sometimes you really do have to take the full amount of time to do something and there are no shortcuts.  Other times, however, you really can just stop endlessly over-analyzing every little thing in your life and just go with your best instinct at the time.

 And if you make a mistake, most mistakes are correctable.  And you will have learned a lesson.

So the lesson here:  The lesson is that there are many lessons in Motherhood, I guess, which often have less to do with your child and more to do with your outlook.

 Is that clear as mud?  LOL