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1 in 88

The CDC released the figures of 1 in 88. 

Autism is an epidemic. 

Some agree, some do not. 

I hear this number and automatically think “that seems about right”.   We moms of children on the spectrum generally have, over the years, sought others like ourselves.  I was wondering, does your average Joe/Jane American come in contact with quite as many people on the spectrum?  Do they see Autism as an epidemic too?

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Did you know that the figures released by the CDC say that 1 in 54 boys and 1 in 242 girls are affected with Autism?

Girly Autism is on the rise!  One girl in 242, wow!

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Our girls are so unique, aren’t they?  Many of them do not quite have typical, textbook, classical, “spot it from a mile away” Autism.  Therapists I’ve spoken with tell me it is harder to pinpoint an Autism diagnosis in girls on many occasions.

My own Rosebud was clearly different as a toddler, but because of her social, gregarious nature, I had more than one professional tell me she did not have Autism.  I even had a school psychologist tell me she didn’t have Autism after a few minutes observation.  That same psychologist appologized to me after being with her 1 on 1 for testing.  “Yes, your daughter does have Autism”.

With 1 in 242 girls being diagnosed now, it is important for those of us with children blessed with Girly Autism to communicate with each other.  We may not always agree on things (vaccines, diet, therapy choices, etc.), but we all need to know that there are others out there like us.  Moms in the midst who need social, emotional, and sometimes real practical help from others who have been there!

I encourage my readers to post their favorite blogs, articles, and links in the comments section.  Many of you have passed along GirlyAutism to your friends and for that I thank you!  

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Honest and sincere questions welcomed!

I just got a very good question from a friend.  She was hoping I wouldn’t get upset by her asking.  I told her that HONEST and SINCERE questions are always welcomed!  I’m still searching for answers too – and I live with people on the spectrum!

How do we really KNOW that all of these characteristics are a true disability? Is it possible that some of this is just an extreme focus on self, for example — focusing too much on what I want, what I like, what annoys me, etc.? For example, can someone on the spectrum be taught that they SHOULD make eye contact no matter how it makes them feel, just because it is the polite thing to do?

I guess what I’m asking is — are people on the spectrum CAPABLE of learning to overcome these socially “different” behaviors? Can they be taught to focus on other people and learn to understand someone else’s perspective, etc?

Now, if you are a momma with a sensitive spirit, please try not to be offended by the question or my response to it!  We all have the right to question and to respond as we feel we know how.

As for that question, my answer would be that I think they can change. To a degree. I think it just takes a loooooonnnnngg time, and lots of practice. And the change has to be initiated from someone outside – not themselves.

JuneBug, for instance, can handle being in a swimming pool and occasionally getting splashed if she is really really working on it. She’s given herself pep talks and gotten her mind in a state of happiness (I get to enjoy the pool if I can tolerate the splashing). A lot of it is selfish motivation still. This is a HUGE change from when she was 3 and got splashed in the face and totally freaked – screaming as if someone cut off her hand, totally unresponsive to the outside world – it was almost like she was having a massive panic attack, with all the physical symptoms. It was really, reallly, really scary because her entire being was focused on that water and she couldn’t snap herself outside of her own brain to even hear or see anything else, even when I was right in her face, hugging her, talking to her. She was rigid and hysterical, almost catatonic.

I find that her mood has a great deal to do with her tolerance levels. When she is in a really, really good mood, she can load the dishwasher while saying to herself “it’s ok if my hands get sticky, because I’ll wash them when I’m done” so that feeling like she is going to explode or throw up is kept at bay. But if she doesn’t have that adrenilin going beforehand, she gets so panicky that it almost makes her sick. I think that is why her anti-depressant works so well to combat the melt-downs.

I think that these kids really can not figure out what other people’s perspectives are. They have to be taught that other people even HAVE a different perspective! That can be taught, but their perceptions are very different than ours. So even if they try, they don’t get it right about 80% of the time.

I don’t know if they will ever think about other people the way we do. Or consider someone else’s perspective.

I know in RoseBud’s case, when I ask her if she thinks it is fun to get hit with a toy she will say no. Then I ask her if NinjaBoy thinks it is fun to get hit with a toy she will say no. But if she has just hit NinjaBoy with a toy and I say “did he like it when you hit him with that toy” she will say YES – because she can’t see his perspective in that moment – she see’s that SHE was having fun, so he must have been having fun too. There is a serious dis-connect there.

But I think talking them through situations like these day after day after day x365 days a year over 20 years or so, they will eventually start to see other people’s perspectives. I don’t think they will ever ‘focus on other people’s perspectives’. They just don’t think that way.

Looking people in the eye is easy for JuneBug if she is in a good mood. It is torture if she isn’t. We used to force her to make eye contact over and over and over, day after day after day. She hated it, but got over her insecurities. That is what it is – when they look into your eyes, they feel like you are looking into their souls – into those inner places that no one wants people to see. That makes them extremely uncomfortable, and the flight or fight sensations take over. I don’t know why they don’t mind it when they are in a good mood. But if you see JuneBug in a bad mood or unhappy you will see that she rarely gives you eye contact.

RoseBud, on the other hand, has to be told to look at your eyes because she is so distractible.

People on the spectrum are so different. Even from one another. Some may have NO sensory issues, some have a few, and some have so many that they can’t function. Some have no clue as to how others feel – even when someone is crying and bleeding. Others can read a few emotions (excited or fuming mad). Still others are really good at reading facial expressions but have no clue why they feel that way – even if they heard the person say “I found a hundred dollars!” and saw them jumping for joy as they were saying it!

I think JuneBug is much better at seeing other people’s perspectives than RoseBud. As she gets older, she learns more and more on her own by watching her friends. She still misunderstands many of the social interactions that occur though.

RoseBud is much less aware of other people’s thoughts and feelings and doesn’t learn just by looking at the world – she has to be taught for the most part.

It’s been a long road of questions for me. Some days I just want to give up. I don’t know all the answers. Discipline is a constant struggle – what do you do when one kid is crying from being hit and the other is oblivious and giddy because she’s having so much fun? I got no end of parenting advice when Julianna was little – just spank her more, don’t let her get away with such and such. I can’t even begin to tell you the damage I caused in her self esteem and our relationship from ‘just spanking her more often’ when there were much bigger issues than her just being a defiant child.

The Lord has been a huge part in JuneBug’s growth. She is a Christian and she can feel the Spirit leading her sometimes. She has a servant’s heart, and that is something I will always be grateful for.  She used to not care a bit for others, but now there will be times when she recognizes and reaches out to a person in need and tries to help them.

Blog readers, please feel free to leave your comments – and remember this is a family friendly site so no objectionable content please!  I love different opinions.  I live in a world with 2 ASD children who have quirks and 5 NT children with just your typical little kid thoughts and behaviors.  I know those few children well, but there are all sorts of other people out there with different perspectives and experiences.  Feel free to agree or disagree as you feel led.

Intuition

Rosalie at the Beach (2)

There are many things I’ve learned from my years raising children on the spectrum.  Right now I would call it an innate, intuitive knowledge.  Seven years ago I would have called it a royal pain in the rear.

Let me explain.  Seven years ago I knew there was something unusual about the extreme reactions my children were giving me to certain stimuli but I didn’t know why.  Therefore, being a typical mom following the ‘rules’ of parenting, I just assumed I wasn’t doing my job well enough.  I spent quite a few years of training the way the ‘experts’ told me to do them and failing miserably to train my children out of their tantrums and misdeeds.  One child, and quite a while later, another child was diagnosed with Autism and I started tailoring my parenting to meet the needs of these children in their own special way.  Those books?  They ended up in the recycle bin.

Want an example?  OK.  Lets talk shoes.  Everyone wears them, right?  Everyone has their own favorites – whether it’s flip flops, stillettos, Nike cross trainers.  But for those who are blessed with super sensitive nerves, skin, hearing, and all sorts of other wonderful blessings (i.e. many folks on the spectrum), shoes may be a serious trigger for panic.  One of my children went through a severe shoe aversion period.  Imagine taking an incredibly sensory overloaded child to the mall to get shoes.  Mistake number one  – but in my defense I had no idea that she was on the spectrum at that point.  Imagine then getting this severely stressed six year old to try on a pair of shoes, then another, and trying desperately to get through a third pair – that lasted all of 15 minutes before the meltdowns escalated to the point of no return.  Pair after pair after pair of shoes were purchased – then immediately rejected because of (to my NT mind) insignificant little details.  One pair was too tight, one pair was touching a part of her foot that she didn’t like, one shoe had a label sewn into the tongue, one had a label sewn into the sole, she HAD to wear *shudder* socks with one pair, the straps on another were itchy.  It got so bad that some weeks the melt-downs lasted for days on end.  The rage, tantrums, screaming, kicking… days on end.

So what did I do, way back then?  I floundered.  Many days I forced her to wear the hated, dreaded, vile, disgusting, hysteria-making shoes – quoting the “I spent good money on these shoes that YOU said you liked!  And now, by golly, you’ll wear them!” – and then bringing down the hammer of discipline when she had the inevitable meltdown.  I then got annoyed, threw the pair of shoes into the goodwill box and made her go barefoot and brought down the hammer of discipline when she had the inevitable meltdown (again).  Um…so much for conventional parenting wisdom…

These lessons were very hard to learn.  For me, the parent who was going insane trying to figure out how to deal with these horrible behaviors, and for her, the child who was spending her energy not flipping out over these daily excruciating sensations.Lesson 1.  Never assume.  Know what you’re dealing with (Autism, sensory issues) and don’t just assume your child is being defiant on purpose.  Lesson 2.  when you figure out what you’re dealing with, preparing and pro-active planning are absolutely essential.  Lesson 3.  if all else fails and there is a meltdown, don’t focus on punishment – focus on teaching ways to deal with the situation better next time.

So, now after all these years, some things have become second nature.  Intuitive.  As natural as breathing.

Transitions need to be clearly defined.  This prepares the child for what is to come giving her power over her future and a sense of security.

Using a timer is an absolute MUST in my family.

I know that I need to give a 5 minute warning, and stick to it.  When the timer rings, I know that I will need to allow the girls time to finish the game they are playing before turning off the computer, or time to finish the game with friends, or time to finish that page they are reading.  To say “timer went ding – get off NOW!” guarantees a meltdown of massive proportion.

Where one child needs solitude in order to regroup and chill out, another needs serious one on one time preferably with deep physical contact.

One child is sound sensitive, so I put her as far away from lip-smacking, soup slurping chatterboxes as possible.  I prepare her for possible noisy places by reminding her to bring headphones or ear plugs.  I instinctively know that after a loud event (such as a car ride with 6 siblings in “YEAH! School’s out!” mode) she will most likely have a headache and I should refrain from talking to her.

I know that time is an issue for these children.  One has a very hard time dealing with concepts of “later” and “soon” or any other non-specific, abstract time concept.  Giving exact times helps prevent perseverance.  One has a very intense need to be exactly on-time.  When she feels that we are ‘late’ for an event or appointment it is overwhelming.

When giving chore assignments, one child has to be as far away from others as possible – including not crossing anyone’s path as she goes back and forth putting things away.  The best of the best situation is to let her do her job when everyone is finished with theirs and playing either in their rooms or outside.  The other one needs constant re-direction.  I have learned to ignore the “it IS clean!” and just simply shove everything into a pile into the middle of the room that is supposedly ‘clean’.  Working one on one with this child is an absolute must, as she is still young and has the attention span of a flea on speed.

In the van, I have become the master at strategically orchestrating entrance and egress.  I know not to put one of my girls in the rear.  Between the motion sickness and noise, the inevitable fight over the loudness of the radio and the force at which the a/c is blowing it simply isn’t worth it!  And when entering and exiting the rear of the van I know that there will be casualties from her rage at having to sit in the back like a ‘little kid’.  I know better than to put the other in the seat next to 1. a loose seat belt, 2. a child, or 3. directly behind the front seat. I know that I need to make her take her shoes off and put them on the floor before we get moving.  Many times over the years I’ve had to pull over to the side of the road to assess injuries after she has used a seat belt buckle as a lasso or a flying shoe has beaned someone upside the head.

Many momma’s have to plan strategically for events, and maybe even for bath time and bedtime, but you should see what we go through to have a decent meal!  I know not to sit child a next to child d and child c must not be across from child a or f.  And heaven forbid child e is near enough for child b to touch her!

I should be a military strategist – or at least a doctorate level educator for all the real world experience I bring to the table…

Missing my eldest

Today I was thinking about my eldest daughter JuneBug.  A few funny thoughts ran through my head.  First was the time she was listening to the radio (a Christian radio station that is “Safe for the Little Ears”) and heard the announcer say “we’re here for you in your time of need, so reach for the “hope” button on your radio”.  JuneBug, after hearing this over and over for the last 11 years, turned to me and asked “Mom, where is the “HOPE” button on our radio?”  I then explained to her that there really wasn’t a physical button on the radio, but that the button that I push that turns the station to the “zradio station” is the button they were talking about.

Then there was a few days ago when she said “Mom, what’s a sweet tooth?” and I explained that it is when someone craves sugary foods.  She said “Oh, I thought it was a tooth that hurt when you ate sweet foods.”

I love JuneBug.  She’s so inquisitive and I’m so glad that she opens up to me and asks me these questions.  She will be 13 next month – the start of teenager years.  I just pray that she will continue to be open and honest with me.

Ever had this happen to you?

I was pondering a question on the survey I was doing recently that asked “Do you feel that people judge you because of your child’s autistic tendencies?”

I answered ‘no’, simply because first of all, I don’t notice what strangers think.   Usually I’m so centered on monitoring my children’s behavior, keeping everyone from fighting, lagging behind, hurting themselves and keeping them quiet that I don’t really notice people staring or whispering.  Secondly, no one has ever said anything rude to me.  Third, and maybe most importantly, I don’t really care what people think – they don’t know me, or my children, and if they did they’d give me a smidge of grace or compassion.

Yesterday we were in the car stopped at a red light and I heard Koko say “J, quit staring at that lady!”  I had never noticed her staring at people before, so I turned to see what she was talking about.   The lady in the car next to us was staring at me as if I had 3 heads!  I started telling JuneBug how it is rude to stare at people – all while the lady kept staring at me (I assume because she was annoyed that JuneBug was staring at her?).  It was so bizarre.

Julianna and her little brother Aaron

Julianna and little brother Aaron (9/2010)

I think JuneBug was just daydreaming and started staring at the lady on accident – but then again how would I know?  JuneBug was embarrassed that she was being yelled at by little big mouth sister, and being fussed at by mom.  So of course she couldn’t tell me why she was staring at the lady.  She may have even had a small seizure again.  But what am I supposed to do – roll down the window and yell “Hey, sorry she was staring, she had a seizure and has some autistic tendencies”?  I don’t think so.

So normally, I would say that I don’t feel that people judge me because of my child’s tendencies.  But on that occasion I would answer with a resounding YES!

Labs…and not the doggie kind!

This has been such a week!

First was a blood draw for both RoseBud and Koko. If you watch the video, you will see that I toted my 3 preschoolers along on this trip to the lab. So that’s 5 children waiting an hour in a waiting room. They actually did great, except for when LittleTurkey leaned back in his chair and fell over backwards, and when he and Bubba kept getting ornery and fighting over the little red chairs. When we arrived the tv was on a news channel – boring! – the kids were bouncing all over the place. When I turned on Dora the Explorer on Nick Jr. they settled down for the most part.

A few days later I had to take RoseBud back for another blood draw – this time 5 large vials, and 4 small vials of blood were filled and sent off for testing. That was only a 45 minute wait. She did fantastic, by the way! What a trooper!

But this morning takes the cake…JuneBug needed fasting bloodwork. We got to the lab at 10:10am (she is a late riser!) and did not get out of there until 11:50! Whew am I glad I had a sitter!!! Because on this day there was standing room only in the lab, JuneBud was so nervous, tired, cold and hungry that she was leaning on me the whole time.

RoseBud waiting in the doctors office lobby:

Our Goldie dog's momma, Nora

I can’t wait to get our REAL lab – our service dog. That will help keep anxieties at bay, be a soft warm thing to lean on, and be a great distraction!