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I Can FIND Them!

Sometimes we forget.

 

We forget that even though she isn’t looking at us, or seemingly paying attention, she can still hear us.  And understands fully!

 

I said to the sitter “At bedtime, make sure you put the remotes up high so no one can get them when they go roaming around in the middle of the night.”

“Yeah, like RoseBud!” shouted a child from another room. 

Without skipping a beat or even looking up RoseBud said “I can FIND them!”

It was classic!

We all cracked up!  Too bad I didn’t get it on video when it actually happened – it was completely priceless!

A very close re-enactment:

Emotional Pain vs. Physical Pain

When I was a kid if I stubbed my toe I yelped then cried.  If I had a tummy ache I held my tummy and acted sick.  Headache?  I avoided loud places and went to lay down.  When someone asked what was wrong I could usually say “my toe hurts” or at least point to the ouchy spot.

Last week I had a refresher course in the uniqueness of a child with Autism.

My sweet Rosebud and I have been working specifically on keeping our hands and feet to ourselves among other things.  Last week it was like she had reverted back to the three year old who needed attention and used her hands to get it. Hitting, poking, grabbing people.  Geting in others faces and yelling loudly, spitting, screaching, and laughing at FULL VOLUME.

Thursday she was mildly annoying. 3 minute time outs were down to 28 minutes, including cleanup time.  By Friday the behaviors were obnoxious, plus now she was reverting to wetting her pants every hour.  By Sunday her obnoxious behaviors became downright dangerous (throwing hard objects at people’s heads) and a 3 minute time out stretched to just under 2 hours.  All day long it was wailing and crying from one child or another…and sometimes from myself!

Mommas you have been there, haven’t you?  You do x, y, and z that the ABA Therapist tells you should work.  You get a good measure of success but then something happens.  It all falls apart and you think “What could I be doing wrong? This SHOULD be working! It has been working” and you blame yourself for failure.

I was in a very frail emotional place Saturday night after several hours of being the non-reactive, calm parent.  I locked up everything Rosebud could get into, left her with her older sister, and took the younger 4 children out of the house for a drive in the torrential rain.  Begging God to help somehow, a song came on the radio by Matthew West:

“I know I’m not strong enough to be everything that I’m supposed to be. I give up. I’m not strong enough. Hands of mercy won’t you cover me? Lord right now I’m asking you to be strong enough. I’m not strong enough.
…I can do all things through Christ who gives me strength.  I don’t have to be strong enough.”

Sunday morning there were no clean pants left in the entire house for Rosebud after her three days of incontinence.  I told her to wear an old pair of pajama pants, and went to church.  I left her in the care of a nice lady in childrens church who was given instructions to not let her near enough to her siblings to touch or harrass them, and to take her to the bathroom every 30 minutes just in case.

I went in to worship God.  The pastor spoke about being on fire for the Lord even through our hardest days.  He shared a story about a friend’s faith even though his daughter was medically fragile from birth.  Anothers faith through a separation.  And as the sermon went on I told God that I give up, I’m not strong enough.  But you would never guess what happened next.

Service was over and I went to gather the children.  Rosebud had made it almost all the way through the service staying dry.  Almost.

On the way home I had an “a-ha!” moment.  I asked Rosebud “does it hurt when you pee?” And she got all teary eyed and said “YES!”

Rosebud was suffering from a very real, incredibly painful urinary tract infection.  Because of the way her brain is wired, she could not tell me.  It was real physical pain that brought her good behavior to a screatching halt!  There was a real, definite cause to her seeming “reversion” to when she was younger (incontinence, massive hours of meltdowns, hurting people).

I stopped blaming myself and started begging God to be strong enough for both of us.  I give God the credit for this one folks!  He brought the UTI possibility to my mind.  He loosened her tongue and tears when I asked her if it hurt, so she could give me an accurate answer.

After a trip to urgent care Sunday, her medicines started working and she is just about back to her gregarious, fun-loving self.  She is back to responding well to the ways I’ve learned to encourage proper behavior.  I’ve got my Rosebud back!

Thank you Lord for being strong when I am weak!

Here she is (with her siblings and schoolmates) singing this very same song:

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!  

Encouraging Words

Saturday was rough.  Yelling, crying, fighting, messes… and then the children woke up ;o)

Proverbs 15:1  A gentle answer turns anger away.  But mean words stir up anger. (NIrV)

Trying to get 7 children to do their chores on Saturday AFTER watching 3 hours of cartoons – I could have been wiser.  But chores needed to be done and I am the mom (manager, boss, slave-driver depending on which child you ask!).

Rosebud and her little sister were to unload the dishwasher.  They fought as they were attempting to NOT unload it.  “I do the top and you do the bottom OK?” “NO!  Get away from me!” “MOM!!! She’s not helping” “I no like you!” “You a bad girl!” …and then the shrieking began.

Ever feel like a fire fighter?

Small sparks were igniting and I needed to get these two angry girls away from each other before a raging forest fire erupted.  So Rosebud was sent to her room to clean, and Evie was left to unload the dishwasher all by her lonesome.  That just made them both mad, because it’s so NOT FAIR that they had to do EVERYTHING all by themselves. (We’ve all heard this one, right Moms?)

Dishes were done, room was still a mess.  Both girls were going to have to fight it out and clean their room. Their 10 x 10 room with 2 twin beds.  Boxing gloves, please…

About 20 minutes into the “cleaning” session I saw Rosebud running to the pantry.  I stopped to actually listen to their conversation (tuning out is my only sanity saver at times), and what I heard astounded me.

“I sweep under the bed and you clean the floor, OK Evie?  I get the broom, I under the bed and you clean the toys.  I GOT IT! I COMING!!!  I get the trash can for you OK Evie?” Rosebud was yelling in that sing-song-y voice she gets when she is really happy.

I literally did a double-take.

After 20 minutes, I saw this:

I called the girls over and told them how proud I was of their cheerful faces and how they were working together.  They reminded me that they had been learning about being cheerful at school all week.  Then, wonder of all wonders, Rosebud said “Cheerful face is joy in a heart, and good new is helf to bones problems 30:15”  I was amazed.  She quoted the Bible verse that they had learned in school!  Of course it wasn’t word perfect, but she knew what the verse meant.

Proverbs 15:30 A cheerful look brings joy to your heart. And good news gives health to your body. (NIrV)

Restaurant Re-Do

Children playing behind thick glass windows? Almost like watching TV with the MUTE button on!

This morning was free chicken biscuit day at our FAVORITE ChickFilA here in town.  This is a fabulous thing – what a rare treat to take my 7 children to breakfast for free!  They enjoyed their breakfast immensely – several eating just the biscuit, several eating just the chicken, and some too excited about the indoor play-place to even consider eating!  What a great way to start my Friday.  [leftovers for lunch anyone?]

About 45 minutes of blissful peace later everyone got their shoes on and came to the table as we prepared to leave.  I took a moment to get refills on our drinks from the counter that was about 30 feet away.  As I was standing at the counter talking to the cashier I heard screaming and then a crash.  RoseBud was ‘playing’ with LittleTurkey and had grabbed his chair and flipped it backwards (thankfully he stood up before it flipped).  As he was attempting to right the upturned chair RoseBud forcefully pinned it to the floor with her feet.  LittleTurkey was screaming at the top of his almost 4 year old lungs in frustration.  Meanwhile RoseBud was blocking the entrance of the restaurant with her own chair and cackling with giddy delight.  Needless to say we left immediately.

COW KIDZ!

Holy COW!

You can imagine the stares, whispers and everything else that goes along with rowdy kids in a restaurant.  I’m totally unphased by this attention at this point.  I am one person with two arms.  I can not control everything at all times.  My job is to train, and hope this will not happen next time.  My job is to control my response.  My job is to love my children even on their ornery days.

So my apologies go out to all of you at ChickFilA this morning.  You were attempting to enjoy your free chicken biscuit in peace when  an obnoxious set of children started screaming and fighting over a chair.  I will work on this at home and attempt to bring perfectly behaved, quiet, obedient children next week – on FREE Chicken Mini day!   But in case I can’t ‘fix’ her Autism and all the social deficiencies before then, maybe I could bring you some ear-plugs?

Thank you ChickFilA for a fabulous breakfast!

🙂

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…