Monday, September 26, 2016

Let me Just Update You

So let me just update you while I work on the linens for church.  (Soaking can take a while).  We put in an offer on a house that's down the street as you recall.  They sent us a text asking if we would be willing to bite on a counter offer.  We agreed and so the place in now in contingency.  On Friday I go in to have the inspection done and barring now major repairs, we are set to receive keys on the property on St. Martin of Tours (or thereabouts).

I have St. Terese of Liseaux to thank for all this.  I've been praying a novena for her intercession on house hunting.  And because she's just that type of saint, there was a potted rose by the front door of the house.  No, I had no idea that she enjoyed house hunting.

This Monday morning we went to the allergist to rule out that as the reason for tonsil issues with Knee.  He is allergic to grass, but only very slight.  Not surprising as my father is severely allergic to grass and on top of that he has asthma.  The allergist doesn't think that his grass allergy is the cause of large tonsils, but he says sometimes these things don't show up on the allergy test and his panel was for only 20 common ones. He suggested giving him an OTC drug at night to see if that helped any.

The allergist was concerned about Knee flunking a hearing test at school.  That, he said, is not allergy induced.  He said his tonsils could be affecting his ears and told me to back to the ENT and ask to have his hearing tested more thoroughly.

As for HB, last week he was really moody and struggling.  Giving up is the best way to describe it.  I went and observed his behavior in the classroom on Wednesday (their door has glass).  For a while he was sitting and then he went around the room trying to engage his classmates in play.  What I saw was not naughtiness, but sheer boredom.  And since he lacks the ability to regulate his emotions very well (and really neurotypical children get into trouble too for being bored), he was wanting to do something.  Good for him really.  Bad though that he keeps being pulled out of the classroom for disrupting others.  He naturally doesn't understand why this compulsion is getting him into trouble.  And he can't really stop himself either (nor do I want him to, actively wanting to engage others when you're autistic is great).

Being that I am "the mom" I wrote a letter saying the problem is that he's bored.  Get him out of the classroom before it starts up and you all will be happier.  Give him something that's truly a challenge for him. He will be happier too because his confidence will be boosted and he'll be getting that stimulation he so craves.

And they listened to me.  The reading specialist at the school is going to pull him out to do, among other things, more challenging reading assignments, create his own comic books, and read to the kindergarteners.  As she put it though, he still has to complete his 1st grade work first (which he can do in about 5 minutes flat) before he can do all the fun things.

I'm so happy for him and even though he was nervous about school, I reminded him that he wouldn't be bored so he should give it a try today and see if that helped him stay out of trouble.

On October 10, we have the official meeting and that's when we get all the documentation that gives us better power (and the school power with the district too).

And that's what's been happening.

Friday, September 23, 2016

Wanted to Post

I've been wanting to post, but I've been so busy.  Basically a house down the street from us went on the market yesterday.  No exaggeration of that either.  It has the same street address.  It's bigger than our rental is because they expanded it.

So for those of you who have seen our rental.  Imagine that our living room was converted into a dining space with that weird wall opening turned into a door way.  And the Arizona room (enclosed porch to you non-Arizonans) was converted into a living room with a small room off to the side.  To access the small room, you'd either have to go through the living room or the Master bedroom.  It also has no closet. But this is fine because Hubby would use it as an office/game room.  Everything is exactly the same.  It's uncanny.

They basically updated everything.  The floors are tile (which I'd rather some carpet for the kids sake, but I guess we can invest in area rugs).  So it's a nicer bigger version of the house we're currently living in.

When we showed up to look at it this morning, someone was already peeking at it.  That's how hot our area is.  So this afternoon we put in an offer.  We'll hear back tomorrow.




Tuesday, September 20, 2016

Lack of Awareness

I was talking to a lady who does observations at Knee's headstart about HB.  As she put it, people often lack awareness because autism is an invisible disability.  Basically you don't see the autistic as being disabled because there's nothing a person can physically see thus there's a lot of misconception.

For example, last Sunday I was talking to the assistant to religious education director.  She's an older lady and I'm not sure what background she has.  But as I was mentioning my concern of HB when cliques and social pressure comes into play (usually 3rd grade), she brought up another autistic child from the past.  She said that he was a bully and that he chose to hung out with bullies and that his mother was simply unaware and concerned more about him being bullied.

?

I don't know the particulars so I hesitate to judge and simply nodded.  The problem is that 1) just because he seems like a bully doesn't make him one.  Autism is a social disability.  This child may simply not be aware of what harm his behavior was doing.  So to label an autistic as a bully.  Well....I wouldn't.  2) He may have chosen to hang out with bullies but again that doesn't mean that he's aware of what their behaviors mean. 

In other words, I don't think the assistant really is aware that this kind of judgement call is rash judgement.  Unless the autistic child can confirm definitely that they are aware of what bullying is and that they are actively engaging in it, you cannot positively assume that they are in fact a bully.

Something similar happened to me the other day that made me almost jump down the throat of the secretary.  She basically said that HB was aware of what he was doing was "wrong" in this case his echolalia where he says potty words on repeat because whenever the principal asks him to stop he does.  Just because he stops when the principal asks him to doesn't mean he did it because he knew it was "wrong."  For the record, I don't find echolalia wrong.  Yes, it can get out of hand and be a distraction but assigning morality to a disability is simply wrong.  Making the assumption that HB knew it was a distraction is wrong.  Furthermore assuming that he has the ability to stop himself on a dime whenever he wants is also wrong.  But the principal acknowledged that his secretary has zero training with autism.  He said "she doesn't know what she's talking about."  And sadly she works at a school.

To make it more sad, a teacher said that HB laughed in another teacher's face, which socially in our culture is meant to be insulting and belligerent.  I had to explain to her that again autism is a social disorder what it means to him is not the same as what it means to us.  For him, I'm not sure what it means, but nobody should take it as an insult.  You have to assume that he doesn't know because he's disabled. 

Last year he struggled and I would ask him "What happened?  What did you do?"  And he didn't know.  Not the type of "I don't know" children say because they don't want to be chastised, but truly he didn't understand.  This year he acknowledges that he was too loud or what have you, but again he doesn't know why those things get him into trouble.  He's only at the beginning of understanding and he's not able to put himself in other people's shoes yet.

Autism is a neurological disorder.  And at age 6 HB (and various other autistic children) should not be held to the same standard as other children socially.  Why?  Because they truly don't understand.  They appear to.  But ask them to explain it back to you before assuming that they get it.  As I said, HB can't think of how others feel yet or understand completely the consequences of his actions. 

And I wish people would give him the benefit of the doubt and stop assuming that because he seems normal doesn't mean he's less disabled or that he completely understands.  This I think is what autism awareness really is.  It's not the basics of understanding autism to be a neurological and social disability but to actually be aware that your assumptions of what an autistic knows and understands can be wrong. 

So today as you go about in public, try and be aware that the odd ball person you meet may have a disability that hinders them.  Assume that they are intelligent but don't truly understand.  As an autistic adult described it imagine you are an alien and landed on a strange planet.  That's autism. Thanks.

Saturday, September 17, 2016

Monday, September 12, 2016

Tonsils

I took Knee to an ENT appointment this morning (that's Ear, Nose, and Throat).  His pediatrician was concerned with the size of his tonsils and his snoring.

He recommended surgery.

I'm really leery of having his tonsils removed.  I'm a big proponent of body integrity and am against body modification.  Basically if there's a medical alternative, I'd rather keep my children's bodies the way that they are.  Of course when they are old enough to make decisions for themselves like getting a tattoo or something, that's their choice and their risk to assess.  But at this point if I can avoid surgery, I would like to.

Maybe I'm being a bit over-protective but the idea of having to put my four year old to sleep to remove parts of his body makes me nervous.

Hubby and I briefly discussed the possibility of surgery.  We realize that his sleep is being interrupted especially lately thus he is extra whiny.  The thing is though are his tonsils naturally too large or could it be allergies?  He regularly complains of his eyes watering and sometimes allergies causes the tonsils to become enlarged.  It's something I want to look into.  The ENT guy is not an allergy specialist.  He's only met with us for 10 minutes tops.

Which lead me to my next point, shouldn't we at least be getting a second opinion before a surgical operation that is non-threatening?  When I had my wisdom teeth removed, both my pediatric dentist and the oral surgeon looked over my charts and concluded given the size of my mouth having my wisdom teeth would be beneficial.  To try and have them grow in would cause tooth crowding and extreme pain.

In Knee's case only one gentlemen has even looked over his charts and concluded that his tonsils needed removing.  The pediatrician didn't even bring up the possibility of allergies or any other causes.  Nor did she say that she thought that the ENT might recommend removal.  Tonsils actually do serve a function and removing them shouldn't be taken lightly.  This isn't the 50s/60s where most children went under the knife almost as a rite of passage.

So has anyone had any experience with this?  Hubby and I have our tonsils in tact so it's something we've never encountered before.

Let me know in the comments.


Wednesday, September 7, 2016

The Measure of Success

My husband's mission is set to launch tomorrow.  If you have a moment, would you offer a prayer for him.  He's super stressed about it because if the thing crashes on the pad like Space X did last week, he looses his job.  And as the bread winner, he's stressed.

If on the other hand it's successful, we can proceed to buying a house.  And last night my husband called me all flustered after having spoken to friends about buying said house in our school district.  As friends often do, sometimes in their efforts to help they often make matters worse.

Our school is fine.  It's the upper grades 7-12 that are the problem.  Academically they fair poorer.  And one of his friends was warning him because several years ago she was an attendee of said school.  She's doing well for herself probably because she was self-motivated.  Understandably she's concerned about the boys education.

And this coupled with his bosses fair warnings got my husband into a tizzy from which I had to take him out of the rafters.  What are spouses for if not patiently calming each other down.

I reminded him that there are charter schools in the area.  Charter schools are public schools that are run by private entities rather than the government.  My husband was concerned that because of HB's disability they wouldn't accept him.  As I explained to him, that would be illegal.  The most they could do is say that academically he didn't pass whatever test muster they have.  This would be ridiculous because HB doesn't have a problem academically.  His disability affects his whole life but he finds academics easy.  So easy that he get bored in class and starts stemming to the point of interrupting the teacher's instruction.  But that's another post.

I thought about this later but I have a friend who lives in state and I believe that her autistic daughter attends a charter school.  Different city but as I said it's illegal to not admit a child based on disability.

Then as I pointed out I've already met with the Sister whose a principal of a parochial school run by an order of sisters.  She basically told me that accepting him into their school would not bother her in the least.  They do have students just like him.  My husband got a little nervous but I reminded him that there are scholarships for children with disabilities.

Then he fretted about Knee, who doesn't have a disability.  I reminded him that they may end up in separate schools anyway because they have separate interests.  No point in fretting over that because when the time comes, I think the children should have a say in what school they attend.

"But we should look at the worst case scenario.  What happens if they don't get into a school?  The public schools aren't that great."

"Do you know what the back up plan would be?  Me."

"Homeschool?"

"Yes.  By that point HB will be 12.  He can stay home and go to school online.  It's going to be okay."

We also got into a lovely discussion about all the therapists and avenues he has for assistance because the school's child psychologist last year was awful at her job.

My husband's distress boils down to wanting the best education for his children and having a good footing.  While that's every parents ideal, it's just not realistic.  My husband and I have actually discussed this before.  We grew up the generation of "get the degree. get the job."  And now the market is flooded with people who have a degree and no job.  It's a lie.

It's also the same if your dream is to send your child to Stanford.  It should be there for those who qualify otherwise again going to Stanford wouldn't mean much.

Plus what is the measure of success.  Money?  Career?  No.  Not any of those things.  People think I've wasted my degree and am a totally unsuccessful leech.  I mean paper work wise I haven't had a job for 7 years and I don't have any income.  But does that mean I am less successful?

As I told my husband our job is to help our children reach the potential God sets out for them whatever that may be.  And help them figure out what that is.  That is the true measure of success.

My parents had dreams for me that were crushed, but that was not what God planned for me.  It does no one good to project onto their children because it may the wrong plan.  Parents are to teach discernment and encourage the child to follow their vocation and whatever education path that may support.

I think my husband just needed to be reminded that his friends grew up with the lies about success and education.  The reality is something altogether different.

Serve God not Mammon.

Monday, September 5, 2016

Not without it's Controversy

In the deaf community there is debate about cochlear implants.  In the autism community it's about therapy.  I suppose it's no surprise as with any community there is controversy.

I'm not talking about the type of therapies that involve looking for a "cure" or looking for a prenatal test.  Those sound more like eugenics and I'm absolutely against eugenics.  I'm talking about controversy surround types of therapy that involve everything from giving autistics medications to help with anxiety to applied behavioral therapies.

I get tired of hearing about "ablism" and being an "ally."  I have no idea what that even means, but it sounds like rhetoric.

I get tired of the whining that because I'm not autistic but have an autistic child that I don't understand.  No, I don't understand.  I don't also understand the world view of a refugee or my neighbor.  How can I?  For that matter, unless you are that person can anyone?  Does anyone understand me?  I doubt it.  I doubt that any autistic understands the experience of every autistic person either.

So when I hear someone say that all therapies (or certain types) are bad then my frowny face comes out.  How can an adult who hasn't been a child for over a decade know what's even happening therapy wise? Therapy has changed and continues to change.  Why do you want an autistic child to suffer?  Why can't an autistic child be taught about safety?  Why can't an autistic child be taught not to hit their siblings?  We're talking about a need for the child and other children's safety.

Or how about their education?  How does running under a desk and screaming actually help my autistic child in the classroom?  Is curbing some of his stems so that he is still participating in class a bad thing?

Do I want my child to look like a "neurotypical" person?  No, I want him to be himself which would include being a member of society.  If disability is hindering that, then yes, I think there is a problem there.  Particularly if we are talking about a person's safety and education.  I'm not talking about having no modifications.  I'm talking about expectations.  You can't really expect a highly intelligent child who can learn to be molly coddled and never taught to not stick stuff in electrical sockets.  I don't care what type of brain they have.  That's just poor parenting.

It's likewise poor parenting to take the advise that no therapy should ever be used on autistic person regardless.  It's poor advise to ignore the voices of those in medicine because some of them aren't autistic.  It's poor advise to ignore the parents of autistics because they aren't autistic.  Just like it's poor not to listen to the opinions of autistic adults AND children particularly the child in question.

So can we cut the crap and just agree that outside of abuse, therapy can be beneficial?  Can we agree that because I'm the parent I can make that call?  Because I'm with the Supreme Court parents have rights on how to educate and raise their child without the need for outside interference unless it's abusive.

I really wish people would stop being so insular and realize that regardless of what your disability is or isn't you are part of a wider community.  And it's called humanity.  And nobody has it easy.  Stop making it harder for others.  Thanks.