Parenting a spectrum of girls

Archive for July, 2012

Wildfire

I’m sure by now most of you have heard of the ignorant, scalding comments made by Joe Scarborough of MSNBC’s “Morning Joe”.  Hopefully you have also heard about and signed the petition to get him to retract his statement (which he has yet to even appologize for).  If not, please look here for more information:  http://www.change.org/petitions/joe-scarborough-msnbc-retract-your-statements-about-autism-and-the-colorado-shooting

Of course, as a blogger about Autism, it is just not possible for me to not have a response to this incredibly damaging statement.  The worst thing to me is that this comment came not only from a journalist, but one who is also the PARENT of a CHILD ON THE SPECTRUM.  That seemingly gives some credibility to his statement that being a journalist alone would not provide.  But please know that being a parent of a child with a disability does not make you by any means an expert on that disability.  Hopefully the Autism community is strong enough and loud enough to flood out Mr. Scarborough’s incredibly incorrect comments, or I am afraid that fear of those on the spectrum will spread like wildfire.  It has already begun, in fact.  In this story, one successful woman who happens to be on the spectrum relates how ignorace of Austims has already spread from Joe through her employees:  http://www.mediaite.com/tv/scarborough-tissue-player-tells-coach-autistic-people-grow-up-to-be-mass-murderers/

And ther’s this story which provides wonderful FACTS and information:

http://www.mediaite.com/tv/autistic-journalist-demands-joe-scarborough-retract-comments-linking-autism-to-aurora-shooting/

First of all, he has no way of knowing anything about what caused James Holmes to tragically kill and injure those people.  Certainly there is something wrong, quite possibly some sort of mental illness.  I can’t imagine someone who was mentally well doing such a thing, but I wouldn’t guess as to any diagnosis or motive, because of course I don’t know.  Neither does Joe Scarborough.  Some people have said he was a bit of a loner, that does not even give any evidence that he may be on the spectrum, let alone lead to a reason he may have done what he did.  I can be a bit of a loner.  I just don’t like to talk a lot and honsetly, I don’t have the world’s best social skills, myself.  Small talk is difficult for me and I’m always afraid of sounding stupid.  However, I am not on the spectrum (it takes a lot more than just being a loner to make you Autistic, and lots and lots of testing to diagnose).  I am also not going out to kill anyone.  In fact, I don’t even want to carry pepper spray.  I wouldn’t hurt a fly (a spider or mosquitoe, yes, but not a fly).  And he points to lack of support system but he doesn’t know that, either.  Most people without a support system do not kill people; some with the world’s best parents do.  No one really knows what causes most tragedies such as the one in Aurora.  I don’t know how in the worl Mr. Scarborough thinks he is more intelligent and qualified than teams of psychologists and other professionals to make such comments.

Secondly, there are people all along the Autism scale, and I have to tell you that they are just like everyone else.  They have disabilities, difficulties to overcome, but someone with Autism is not different than someone with another disability.  They are not more likely to perpetuate violence, in fact they are more likely to be victims of violence themselves, often bullied and victims of hate crimes already.  Now that these revolting comments have been aired across the nation, if they are at all fueled, they will provide terrible, scarring consequences.  Instead of ending violence as we should be concentrating on after such an awful, uncomprehendible act, Joe Scarborough may instead have added fuel to the fire of confusion and misunderstanding about Autism.

I pray we do not see children and adults on the spectrum becoming more frequent victims of bullying, violence, hate crimes and discrimination.  I pray that our country will find peace and understanding and knowledge of the FACTS.  If you do not personally know someone with Autism, I encourage you to seek out such an experience.  In fact, you may know someone with Autism, and not realize it.  Unfortunately being Autistic these days is as stigmatized (if not more so) than being gay.  Many autistic adults remain “in the closet” for fear of negative consequences because of all of the misunderstanding and false information.  You can also educate yourself.  Don’t believe everything you read online or hear on the news.  Check out reliable websites such as Autism Speaks: http://www.autismspeaks.org/.  Don’t let this one ignorant speech made by one journalist on TV cause any more hurt and misuderstanding that already exists.  Please, sign the petition and educate yourself.  And remember, every person with Autism is different, and every one of them is a PERSON, just trying to make it through just like the rest of us.

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When In Rome…

When in Rome, Do as the Romans. 

Except when you have Autism, you’re not in Rome, you’re on one of Saturn’s moons.  And there are no Romans, they are beings that don’t communicate like you at all.  They are loud and unpredictable and insist that you follow their customs and are bewildered and sometimes angry when you don’t understand them or communicate back to them in their own strange and difficult to learn language.

“They” say that something like 80% of human communication is non verbal.  Ever participate in a team building exercise where you are put in a group and asked to build something like a house of cards or tall structure with play-doh and straws WITHOUT SPEAKING to each other?  Since I’m in school right now (for Early Childhood Education), I have done a lot of these recently in different classes.  Typically those with Autism have an extremely difficult time understanding non verbal communication, no matter what end of the spectrum they are on.  If it’s difficult to communicate, missing the 20% of verbal communication, imagine how devastating it is to be missing or struggling with the 80% of non verbal?

I really am going somewhere with this.  It started out being a post about restaurant visits.  But this weekend it really was bigger than that, and it ended up as a post about so much more.

A couple weeks ago we took M to a restaurant of her choice for her birthday.  It was a mess.  It was busy and she was overwhelmed before we sat at the table, then it turned into her screaming that everyone at the restaurant were a bunch of “stupid idiots” (her favorite phrase when she is upset…thanks Home Alone for the word idiot).

Friday night my husband’s mom took us to dinner at a restaurant we all enjoy.  It had been a pretty good day so I thought it might go pretty well.  But, well…the table…
See, it was round.
On the opposite side of the resturant than we usually sit.
I guess I am glad she only said “stupid idiots” a couple times, but she had an extremely hard time sitting in her seat.  She had some episodes of screaming and echolallia.  Tried to run away twice…I had to take her out to walk around the building several times, and I almost took her home but blueberry bread saved the day.  It was a rough outing.  Restaurants almost always are, I’m not sure why we still try from time to time.

Yesterday was rough, too.  She panicked as soon as we walked into the Farmer’s Market and was yelling, spinning, pinching and rubbing her fingers in her mouth.  She was impatient and angry.  I was going to go to a kids’ clothing sale but turned around as soon as I saw they had a line.  We went to a music festival (it was a real struggle to get her there including her screaming at everyone for not being totally silent the whole way there) and refused to listen to music.

So how does this fit?

M (and others like her) wake up every morning on one of Saturn’s moons.  We as society expect them to acclimate to our language and customs and start acting accordingly.  After all, they look like us so it shouldn’t be hard for them to learn our language, right?  Don’t get me wrong, everyone we encountered was kind, and I didn’t feel embarrassed  about her behavior… I think everyone involved handled it well, actually.  But it’s hard at times, even for we parents that live it every day, to understand why they can’t just figure it out, calm down and enjoy themselves or at least control themselves a little like everyone else.  It’s important to remember (and especially for us parents to remind themselves every day) that while we could adjust pretty quickly in Rome, we have a small language and culture barrier compared to all an autistic child has to learn about us strange, unpredictable neuro-typical people.

Teaching a Child with Autism to Read

Teaching a Child with Autism to Read.

A very useful article I found. M has dyspraxia and visial motor problems with her autism, and has little to no interest in books or being read to much less learning to read. I plan to use a lot of these ideas over the next year…hopefully she will be reading before she is 6. Everyone else in my family loves books and reading, it’s difficult and strange for us that she dislikes reading so.

Anxiety for two

Well I am so glad I got my blog page (pretty much) set up this week, because I certainly have something to blog about today.  As you may or may not know, my middle daughter, M, 5 years old, has been diagnosed with Asperger’s Syndrome.  She has always been different and as she grew from toddler to preschooler it became apparent that something was amiss and she needed some help.  So, we have been through occupational therapy, counseling, and lots and lots of testing.  At the end of the spring she really seemed to be improving.  To the point where I was comfortable holding off on any further occupational therapy until school started and thought maybe she would end up not even needing an IEP.  I was even beginning to question whether she really needed to continue couseling at this point.  Then…

THEN.

Right before her last counseling appointment, M mentioned that she wished she were not alive, and she wanted her life to end.  This was the second time she had said something like this, the first had been a couple of months before and her counselor was not concerned.  This time also, we were advised that there was no way M could really understand what she was saying and that she was just expressing her frustration and discomfort in a world she did not understand or fit into.  At this point further counseling would have been a  good idea but we had lost our medical insurance and would not have coverage again for a few months.

M continued to have worse meltdowns than before and frequently exclaim in frustration her wish to not be alive, and that someone or something would “make her killed”.  She started running away, to the point where we had to child safety lock the car doors and electrical tape childproof handles to the door knobs inside the house to at least slow her progress so we could catch her before she got away or got hurt.  She would suddenly panic and try to blot into traffic.  This has all been very trying, and I have been counting down the days until August 1st, when we will have insurance and can get her in to see a psychiatrist.  (They do have financial assistance, but I thought, why use it when it will only be a short time until we have insurance, and leave the assistance for people who REALLY need it).

So it can’t get much worse, right?

Wrong.

THEN, M started to become aggressive.  One day I had to hold her in her car seat so we could get home safely and ended up with bruises on my arms.  I didn’t think this would be a pattern but she became more and more aggressive at home, mostly with me and one of our cats who wouldn’t hurt a flea.  (Oddly enough-or maybe not-she left alone the new cat that is scared and will scratch or bite when feeling threatened)  She also started talking about wanting other people to die- mainly her father and me.  And I thought “thank God we can take her to the Dr. soon, this is getting out of hand and I don’t know how to help her”.

And then it got worse, again…

I was talking to my mom on the phone last night on my way home from work and told her about M’s worsening behavior.  Maybe I jinxed myself.  I said “At least she hasn’t hurt any other kids, or her sisters yet”.  Litereally less than 5 minutes later I walked in the door and heard my youngest crying.  I asked what was wrong and found out that M punched her in the back because she was in her way.  WHAT. DO. I. DO. NOW?

One week.  One week until I can call and make an appointment with a psychiatrist.  I hate the thought of medicating my children as much as most parents, but I really think there is not another option.  We have tried diet changes, supplements, and behavioral interventions.  She is not aggressive in daycare, only at home.  (Which is relatively common, because they feel more safe at home and also because the stress of holding it all together while they are in public is so much that once they get home they just explode).  She has also had to deal with a lot of changes lately, especially for a child on the spectrum.  Since she just turned 5 she changed classrooms at daycare and at Sunday school.  I changed jobs and she is in a new environment several days per week.  It is summer so big sister is home every day.  I think it will take a number of factors and we will be scheduling appointments with her pediatrician and counselor, also.  But I also believe it is time to take drastic steps toward helping her overcome her anxiety and aggression that are so much a part of Autsim for many children, and for us that means medication.  I know it won’t be an instant, quick, magical fix and that it will take a lot of observation, appointments and adjustments.  But when your child wants to hurt themself and others, you will do anything, ANYTHING to help them.

Please pray for wisdom and guidance for us and the doctors, and for relief for M and our family.  For any who know her, she is just such a sweet, loveable girl.  She is smart and funny and loves her family and friends more than anything.  We want to help her take away some of that anxiety and panic and overstimulation so she can feel safe in this world and be able to be herself, the sweet little girl who is excited to start school this fall.  Isn’t that really what all parents want for their children?  It’s just that most are able to take it for granted, because most of the time their children DO feel safe and able to express themselved appropriately.  Most of the time I do not see Autism as a bad thing, just a different way of thinking.  But today I hate Autism, because it has stolen that from my daughter.  It has attacked her and left her feeling afraid and helpless.  And I will do anything I can to protect her from that.

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