I Love You

I never thought Logan would say "I love you" again.  He started losing words at such an early age, and as his speech declined, his frustration grew.  He would have terrible tantrums.  I can remember one day in particular when his frustration was reaching its peak.  He sat on the couch, angrily screaming and pounding the cushions.  His face twisted into a frown and he clenched his teeth.  He punched the couch cushions and screamed, "I!  Love you!  Mommy!"

This would have been funny if he hadn't been so obviously upset.

Some autistic children never speak. They are completely non-verbal, from birth to the end of their lives.  Some can manage a few words.  What I see with my son I consider a miracle...a child who lost his speech for a while, and is slowly regaining the ability to make himself understood.  I try to remember this on days when I am really frustrated...that love is shown in different ways, and sometimes, you don't have to say it.  Sometimes love is just a child, trusting you to take care of them in a world that is confusing and loud.

Myth Number 5: Inability to speak=Inability to Reason or Comprehend

Time passes so quickly.  Before you know it, summer is gone and it's almost Thanksgiving.

I've been really blessed the last few months to watch as my son's communciation skills have increased.  It's become obvious that he's making a greater effort to communicate, stringing words together in short sentences, trying to make himself understood.  Just two years ago, his inability to speak to us would cause him to dissolve into a screaming fit.  Now, he finds unique ways to describe what he wants to convey.  For example, church clothes are "Jesus clothes".

I think of where this all used to be.  There was a time when I would wake up and think, I really can't handle this child.  I don't know why God gave him to me.  I love him, but he drives me crazy.  I am so frustrated, because I can't get through to him, and I know he needs things that he cannot tell me.  Now those days are few and far between.  It takes patience, and knowing that the situation you are in is only temporary.  Someday, the things you hoped to see, the things you longed for, do really come to pass.

I also think of how often children and adults like Logan are misunderstood.  A lot of people assume that just because someone cannot speak, or cannot speak well, then they must be mentally deficient.  This applies to people who don't speak English, also.  We assume that if someone doesn't communicate the way that we do, then something must be terribly wrong. More often than not, I have seen people automatically switch to a louder, slower voice, as if this will automatically make the person understand English, or  make them able to magically speak.  It's an ignorant reaction that a lot of people have, and an ignorant assumption, that muteness, or slow speaking, must equal a mute or slow intellect.  I cannot speak for all people, but in my son's case, at least, nothing could be further from the truth.

Logan's speech is probably at the level of an late three or early four year old.  Some days it's not even that.  BUT.  His compehension is probably more on the level of a ten or eleven year old.  He understands every single thing that is said to him.  I can give him a complex set of instructions and he will follow them.  He is extremely observant.  He will watch me to do something-once-then repeat it.  He could make scrambled eggs if only he knew where I keep the oven knobs.

I am thankful for my son, and his very unique spirit.  I feel blessed to have him...and it's my wish that parents of autistic children everywhere stop, and realize that the hard times often give way to easier times, and that those easier times bear delightful surprises.

It's Not Just in Their Head

This week I had lunch with a very dear friend.  He started telling me about his struggles with depression and other disorders that he dealt with, and how his partner would become frustrated and try to "pull him out of it."

It has taken me a long time to learn that depression disorders are still very much misunderstood in our society.  There are so many causes...a chemical imbalance.  A circumstance.  Genetics.  The wrong diet.  Family dynamics.  What many people don't understand is that a person who deals with chronic depression can't just be "pulled out of it."

I write about this in the hope that people who suffer from it, or who have loved ones who suffer from it, may be comforted in knowing they are not alone, and perhaps gain a better understanding of what their loved one goes through.  I also write about this because depression is rampant in families who have an autistic individual.  Autism is on the rise, and while many people have learned to change their perspective on this condition and have begun to appreciate the good and fulfilling things that autism can bring to a person's life, it's not all roses, and there are many families that are ill-equipped emotionally to deal with these challenges.

The first thing anyone needs to know is that depression is real.  It's not all in their head.  I have known people who start thinking about different scenarios..I call it the "what-if" syndrome ...and because of something that might happen,  they become overly anxious. Their thoughts begin to cycle and they can't stop homing in on this one concern.  They become depressed and it interferes with their daily life.  What may seem trivial to one person or completely absurd is not to the person affected by this emotional illness.  The magnitude of emotional response may seem out of proportion to the situation or it may not make sense at all.  What you have to remember is that it makes sense and is justified to the person exhibiting the symptoms of depression.

Which brings me to my next point.  When this happens, and you recognize that someone is dealing with depression, it does not do them, or anyone else, any good to belittle the emotion, criticize them for it, minimize it, or point out why that particular emotion is wrong.  At this point you have to jump into their reality for a moment.  Accept the fact that they are dealing with a real illness, even if it's not an illness of the body, but of the mind.  Accept that it's very real to them.  Once you accept that, you can stop trying so hard to change it.

I used to think that I was doing something wrong, when I had a friend who was in a depressive state, and I could not "cure" them.  I mean, I'm fun to be around, I know them well, I can get a laugh out of them and distract them from whatever's bothering them, right?  So why isn't it working?  It's frustrating, they're not responding, I must be doing something wrong!

Well, that's not the case.  Recognizing that someone is dealing with this doesn't mean you shouldn't try to help.  You should encourage them to do uplifting things, you should try to get them out of the house, you should talk to them and let them know that you are there, that you are aware of what's going on, and that you aren't going to leave them all alone just because they aren't responding to you the way you think they should.  You should also be prepared to call for some professional help if the problem gets out of hand.  This may include drastic measures that they will not thank you for anytime soon.  Some people become excellent pretenders.  They hide their depression and no one would ever guess what's going on.  But if your loved one starts talking about ending things, doing themselves harm, states feelings of worthlessness, and appears to have "checked out"...it's time for some help.  Other than that, you just ride it out. You can't pull someone out of it.  You can't make them stand up and be active.  You can make plans to speak to them later, when they are not in a depressive state, and point out the effect the problem is having on the family, and on you, and you can form a plan of action for the next time it occurs...but you can't "cure" it.  All you can do is be there.

That being said, I have to play devil's advocate.  There may come a time when you find yourself in a situation with someone who refuses to get help.  They refuse to recognize the problem or the damage it's doing to you and your children.  At that point, you have a decision to make.  If you have talked to this person, begged and pleaded with them to get help, tried every way you can imagine to make them understand and they refuse to listen or get treatment...then you have to decide whose sanity is more important...your own or their's.

The Big Man

Someone complained today that I had not written in a while.  During the summer I suffer from a lack of material...the kids are always home, and things become static.  There's not a lot going on.

A few days ago my husband left on a trip.  He'll be gone for two weeks.  All of my children miss him, but Logan, especially, has expressed those feelings more so than any of my other children.  A couple of days ago he got really out of control, banging things on the floor and making a lot of noise.  We had the following conversation:

"Logan, what are you doing?"

"I banging stuff and breaking stuff."

"Why are you banging stuff and breaking stuff?"

"I want daddy."

Wow!  I want daddy, but I can't tell you I miss him and wonder where he is and when is he coming back, he isn't here to hold me and spend time with me, I feel frustrated and sad about this so I am going to make a lot of noise and bang something on the floor and hope that somebody gets it.

Over the next few days, he has made the following comments, not all at once, but at different times of the day:

"Where daddy go?"

"I want daddy."

"I want daddy come."

"Daddy go on a trip."

"I want to wear daddy's clothes.  I big man."

And that's the other thing.  Most little boys have a deep yearning to be like their fathers.  They learn by watching what their fathers do, how their fathers speak and how their fathers treat other people, especially their mothers and other siblings.  How telling it is, that Logan wants to wear his father's clothes and be the "big man".

I think a lot of times fathers underestimate their influence on their children.  After all, as mothers we carry our children within ourselves for nine months, or spend agonizing amounts of time going through the adoption process.  We bring our children into our families, we nurture, guide, teach, kiss booboos, yell, cry...their is so much of nurturing, and so much of soul-forming when it comes to motherhood.  But I think a father's influence is just as significant...it's quiet, and deep...it's a bedrock that a child can rest on, and years later, they will talk about their fathers as if they were legends of their childhood, "My father always did this, and that's why I do it this way."  "My father always said this."  "My father worked so hard."  "My father always taught me."  I think, for all children, but especially for an autistic child, a father's quiet, controlled influence can bring a measure of relief to emotions that are confusing and still forming.  A father's tender but firm guidance can ease a child through the most difficult and turbulent situations in that child's life...whether it's a temper tantrum, or a bad day at school, or something far more serious.

The evidence of his father's influence is evident in the way Logan is acting during his father's absence. No father should ever underestimate the hold they have on their children's hearts.

The Neighbor Kid

Some friends of ours live around the corner from us.  They have a son who is a few years older than our kids, but he still likes to come over and play games with my older son and daughter on the computer or the X-Box.  He seems to have a good time and my kids always ask when "D" can come over again and play.

The thing that impresses me about this neighbor kid is how he treats Logan.  He never ignores him and he never looks at him cross-eyed.  When he walks in the door, if Logan doesn't reach for him, he says, "Where's my hug?"  I've never known him to get impatient with Logan or treat him any differently from the other kids in the house.

I wish all kids could be like this neighbor kid.  I've read horrible stories on the news, where some special-needs child gets bullied at the bus top or picked on by classmates to the point where they are almost unable to attend school.  And I think a lot of that stems from a lack of awareness or understanding of the differences in other people.  If more parents took the time to teach their children that the world is made of diversity, that what makes it function the best is empathy, love, understanding, and acceptance...then we might all live better lives.  I'm thankful for this neighbor kid and all the good things he knows and all the good values his parents have instilled in him and his brother...who also comes over here from time to time and exhibits the same sort of patience and understanding.  I'm thankful for parents everywhere who teach their children to be kind, to be generous, to be supportive and understanding of others.  And I hope that one day, all parents will begin to see the value of sitting down with their children each night, listening with open ears and an open heart, and treating their children like the gifts from God that they are.

What is Required

I mentioned, in a previous blog, that there are people who adopt special needs children, because that's what they want.  There are also countless people who work with special needs children on a daily basis, whether it's through physical or another kind of therapy, in the medical field, or in a classroom.

What is required of someone who might want to fill that kind of role, or of someone who wants to parent a special needs child?  How is it different from working with or dealing with "normal" children?  Here are a few things:

1) You can't be selfish.  If you are the kind of person who values personal time, who needs someone to stop and praise you for what you are doing or the kind of job you have, or who needs admiration in order to be fulfilled, then forget about this.  Parenting or working with a special needs child has its own rewards, but they are far different from this.

2) You can't be angry.  If you are prone to anger, temper tantrums, or mood swings, and you don't know how to control it, then forget about this.  These children sense changes in mood like changes in temperature.  A raised tone of voice, angry body language, intense emotion...it can all spark anxiety and nervous behavior in an autistic child, or a temper tantrum, and make them that much more difficult.  They thrive on calm.  They crave peace.

3)You have to be patient.  If you are not a patient person, then you will not do well at this.  Logan, for example, seems to come up with brand new ways to get under our skin every day.  At first it was hard.  Now it's "Oh.  You broke a dozen eggs on the floor?  Here's a mop. Clean it up."

4)There is no you.  If you are over focused on your own needs, whether it's sleep, your bank account, the hobby you want to work on, the time you want to spend on the computer, or the fact that you haven't been out with your loved one in two months...guess what?  It may happen....but probably not.

5)Appreciate little things.  Logan's little triumphs, like understanding a certain concept or communicating in a new way...these are huge things.  Even though they're little things.

6)Negativity and complaints...forget about it.  It doesn't help.  At all.  It makes things more stressful.

There is a lot more to it than this.  It's a never ending job, raising a child like this.  It requires a lot.  It requires constant vigilance, constant concern, constant hope, never giving up.  If you are not into constants, if you cannot look at children like this and see God in their faces, then this is not the role for you.

Just Say No?

I was reading another blog today and someone had written in, asking for help about how to keep their autistic children from climbing all over everything.  It reminded me of when Logan was first diagnosed...we could not keep him out of the kitchen sink!  We would take him off the counter forty, fifty times, tell him no, it didn't matter...he would climb up there and stay.  Finally we bought two baby gates and barred the entrance to the kitchen.  People who came over were dumbfounded by the odd look.  Who is trying to get in the kitchen?  Who are you trying to keep out?

Anyhow, I was reading this blog and all kinds of people  wrote in with different answers.  One lady actually installed a climbing wall- in her house- and claimed it worked wonders.  This is an idea we have actually considered!  But the answer that stood out the most to me was from a man who kept yet another blog about autism.  His name is Rich Schull and this is what he wrote:

"This is going to be a very odd and strange answer but , as I meet people from all over the autism spectrum including some in their 80s and 90s from my blog, they simply laugh and say gee we were never allowed to do such nonsense and after a few whacks you figured that out.  These whacks were never child abuse and I could see where some could see them as that in this day and age but in reality they gave Autism some tough standards to live up to."


I have mixed feelings about this comment.  On the one hand, it seems to imply that autistic behaviors are simply a lack of discipline on the part of the caregiver, and that all one needs to do is be tougher, stricter,  and have more expectations, and these problems will go away.  On the other hand, I find it interesting that yes, there is a whole group of people with spectrum disorders that has never been studied or interviewed.  In the eighties, seventies, sixties, decades back forever, autism and other spectrum disorders were almost unheard of.  What did autistic children do, back then, what did their teachers do, their parents?  What was the stigma associated with it?  My own father, I am 99 percent certain,  had a spectrum disorder.  He was born in 1949,  and there were literally NO resources for something that no one ever diagnosed anyway.  It would be interesting to seek these people out, to find out what challenges they faced and what the growing up experience was like for them.

As far as discipline goes...do we have a tendency, as parents of autistic children, to throw our hands up in air and say, Well, he's going to just do that anyway, I'm tired of fighting it...or He's disabled, he simply can't help it (which is sometimes true!)  I don't think that just because a child has a disability, our expectations of what the child is capable of should fly out the window.  With my own son, it is a long, hard road of repetition.  You set boundaries, you make it known to him what is allowed or not allowed.  That doesn't mean that's the end of it.  You're dealing with a child whose understanding of consequence is nil, whose idea of emotion is extremely limited, whose capacity for empathy is buried under a mountain of stimuli.  So you tell him.  You show him.  Again.  And again.  And yet again.  One day, he gets it.  What you can't do, is give up, because it involves more than just simply saying no and smacking him on the bum.  It's patience, it's endurance, it's knowing that this time, when he misbehaved, when he broke that window or made that mess or picked on his sister, this time is not the last time, and it won't be the last time...not for a long time.

Yes, We Get Tired of It

For all of our optimism and our explanations of our son, our urging people to understand him and his unique difficulties, there is a flip side.

Yes, we get tired of it.

Like I said in an earlier blog, no one plans to have an autistic child.  No one does this on purpose, unless you are one of those people who adopts a special needs child (and you, whoever you are, deserve a special place in heaven, in my opinion!).

You get over the initial heartbreak...watching your young child slip away from you and become less and less responsive, giving up the future you had envisioned for your son or daughter...the conversations, the play dates, the football games, the marriage, the grandchildren...He or she is on a different path now, it's a different future.  You learn to accept it.  You learn to not grieve.

So, but yes, we get tired of the challenges.  There are some days when Logan's yelling at the top of his lungs is almost a constant.  And yes, it has, literally, given me a headache.  There are many days when I wish I could go out to the movies or to dinner with my husband without it being an ordeal.  There are a lot of days when we get tired of the throwing, the mood swings, the odd behaviors. We get tired of never being able to get through a full session of church or go to class together because one of us is always running interference with Logan.

It sounds horrible to say all of this.  But it's true.  We love our son.  We would not trade him.  We would not send him back.  But his challenges are our challenges, and we would be lying if we pretended it was all roses and that it was no big deal.  And if it's not that great for us, if it's an ordeal for us that becomes too much sometimes, imagine what it must be for our son.  The thing about Logan is that he knows that he's different.  I have watched him, when no one thought I was looking, copy his brother and sister, trying to be like them.  I have seen him come and sit down next to them while they were playing computer or watching TV, because he wanted to be included.  For someone so brilliant, someone so smart and active in his mind and body, being unable to communicate, to convey emotion and opinion, to express himself or understand others' expressions, must be sheer hell.

So, what do we do when we get tired of it?  Well, it's not something you can just stop doing.  We wait it out. Sometimes, if Logan has had a particularly rough day, I take him, and we drive.  We drive all over town, through my favorite neighborhoods, down by the lake, until he feels more in control and I do too.  I once drove around town for half an hour while he threw a screaming fit in the back of the car.  I don't remember what he was upset about.  I just remember that the longer we drove, the calmer he got, until he finally just let it go. It gets better.  Everything gets better if you just wait.

It's All Chocolate

Some things can change in an instant.  You get in your little rut, you think "This is my chaos, my life with all its problems, but the problems are familiar, and I know what to expect, so it may not be ideal but I deal with it."

About a week ago I found out I was pregnant.

I was very disbelieving.  Like a "Shut up, get out of town, no freakin' way" kind of disbelief.  A "let me take three pregnancy tests and also confirm it with a doctor" kind of disbelief.  The tests all said I was.  The doctor said "Congratulations."

I always wanted four kids.  It's what my husband and I talked about when we got married, something we had planned on.  But after we had Logan we thought perhaps we were done.  Logan at his worst is like four children in one.  So, I found out and I didn't say anything for almost a week.  And where I expected fear, and anxiety, instead I felt a peace settle over me that I have not felt in a very long time.  It was God whispering to me that everything is going to be okay, and that some things are meant to be.

The same week that I told my husband about the baby (he is thrilled, by the way), it became painfully clear that Logan's issues with aggression and anxiety run much deeper than either of us had ever suspected.  I won't go into what happened;  suffice it to say that something occurred that was a huge wake up call for both of us. It warranted a spur of the moment trip to the doctor.  It warranted a new medication.  And now we are playing "wait and see".

I am thankful for my children.  Every single one of them.  Each so special, each so gifted in their own way.  Each with their own set of challenges.  I should be scared of the future.  I should be frightened of bringing another child into a home that is already so fraught with tension and unique circumstances.  But I think fear is for people who are lacking in faith...and over the past two or three years, I have learned that sometimes, faith is all you have.  As Forrest Gump would say: "Life is like a box of chocolates, and you never know which one you're going to get."   To that I want to add my two cents:  It's ALL chocolate, so it doesn't matter!

He Loves Fish Sauce

Know what fish sauce is?  It's nasty.  It's anchovy extract, water, salt, a little sugar...and it smells.  Bad.  We cook with it.

It's great if you put a few drops on rice and then simmer the rice.  It's also used a lot in Asian cooking. It was NOT meant to be drunk by itself!

The last two or three days, Logan has erupted into massive temper tantrums.  It's the first time, in a very, very LONG time, that he has done this, and it's been really disturbing.  When a child does this, you wonder if they are regressing.  You wonder if they are starting to lose some hard-earned communication skills.   And these tantrums erupted over nothing..he was put into time-out for throwing a shirt at the ceiling fan, and another time for banging on the window (we are tired of broken windows).

The screaming was awful...and I felt so sorry for him.  I knew he was upset and in distress and there was absolutely nothing I could do to fix it except just ride it out.

Later it all made sense when I opened the refrigerator and found the almost empty bottle of fish sauce.  I couldn't believe it.  I don't think he drank all of it...I think some of it went into his "manwhich" concoction that he made the other day...but autistic children can and do eat odd things.  Mustard or ketchup straight from the bottle.  Raw onions....bit into like an apple.  Raw potatoes, bell peppers, carrots, and squash.  Salt.  Wasabi. So the fish sauce doesn't surprise me, and now we have to lock our fridge.

Don't Stim In The Kitchen!!

I wrote about stimming, and about  how autistic children do things to stimulate their five senses...touch, smell, taste, sight, sound.  Well...I think Logan likes to stim through smell and taste, or maybe he is just creative.  Anyhow, yesterday, he indicated that he wanted me to open a can of Manwhich.  I don't know why we had it, we never eat that stuff.  Anyway, I opened it, because from him, it was not an unusual request.  He often eats things straight from the can.  Well, once he saw it he didn't want it.  I set it down on the counter and got distracted (easy to do in our house) and there it stayed.

Fast forward about an hour.  I walked into the kitchen and this is what I saw:  Logan stirring something in a big green bowl.  In the bowl was:  the Manwhich, all of our ketchup, some mustard, eggs, and some sliced onions (don't want to know).  I said, "Are ya cooking, Logan?"  (He loves to "cook".)

He turned around, grinned, and lost his grip on the bowl, which splattered his "Manwhich mix" all over him.  At least he was wearing a swimsuit.

There Was Some Confusion

Okay, when I wrote the blog "What Family and Friends Can Do"  I had a couple of friends who really took that to heart and thought they must have done something to offend me or my family.  So, this is my disclaimer stating the following:  While I did encounter some of the things I wrote about in that particular post, the post itself was not written to target a specific individual, and it was not written in order to "call someone out".  I really meant what I said at the very end of it:  my family has been blessed with a lot of wonderful people in our lives, relatives and friends alike, who understand our son and what his unique challenges are.  And we also understand that some people we encounter, like a clerk at a store, for instance, or just some random person, may see Logan's behavior and be utterly confused by it. So, to any family or friends that thought that post was written specifically for them...I apologize if you were offended or worried that I was referring to you.

In reference to the post "Operation OILHIT"...we never got that operation of the ground.  It would have been ideal, to put Logan in a giant hollow inflatable thingy, but it was, in fact, very cumbersome, and we didn't have the required air pump to accomplish such a task.  So, we took it back to the store and are hoping to replace it with something a little more practical soon.

In reference to the most recent post, which was a poem about something in our chimney:  There IS something in our chimney, and we really DON'T know what it is.  Our oldest son has been playing "Billy the Exterminator" and has been poking a giant stick up the shaft of the chimney.  Whatever is up there gets really mad and really loud.  I finally asked him to leave it alone, lest we be beset by a gaggle of angry geckos or a herd of rabid chinchillas.  (The latter, Nathan has informed me, is impossible, since chinchillas are found in the mountains. But ya never know!  They could be a special breed of hairless chinchillas found only in Texas!)

I hope this clears up any confusion or questions, and again, we appreciate everything our family and friends do for us, each and every day.

What Family and Friends Can Do

After writing about the challenges of raising a child on the spectrum, you may be wondering what you could possibly do to help that friend or family member that faces these challenges.  My own mother will sometimes look at me and shake her head and say, "I don't know how you do it."  I see her two or three times a week.  She's familiar with our situation and the unique milestones that it creates in our lives.

So, what can you do?  Sometimes simple encouragement is best.  "How is your day?"  "How are your kids?"  "Do you want to go out for an ice cream?"  Really, even getting out of the house for thirty minutes can work wonders for a person.

Does the person have other kids?  Offer to watch them for an hour or two!  It gives the mom or dad a break, a chance to regroup and focus on what's really important.

Educate yourself.  Do you care about this person?  Do you care about the kids or are you related to them?  Read.  Read everything you can find on spectrum disorders.  It will bring a whole new perspective to how you view the situation that your loved one is in.

And here are some of the don'ts that you can refrain from doing.  These are things I've encountered, and although they were well meaning and I'm sure the person or persons had what they thought were my best interests at heart, all these things ended up doing was making myself and my husband very frustrated and left us feeling more than a little disheartened:

Don't try to fix it.  When you come into contact with this family, or this loved one, and their child who has this spectrum disorder, you may have all kinds of great advice and suggestions on what they could do differently or who they could talk to.  You may feel that what you are seeing is not working and is not they way they should be handling the situation.  Unless there is some sort of physical or emotional abuse involved, try to refrain from "helping" in this manner.  Trust me.  Anyone who has a disabled child has already exhausted all kinds of avenues and tried all kinds of things.  They know their child much better than you do. They've seen this kid at their best and their worst, they know all the triggers, they know the tricks for getting in and out of emotional situations with this kid, and having someone else come into the situation who starts offering advice and telling them what they need to be doing will only lead to a lot of anger and frustration.  It's one thing to say, hey, I know so and so and they are a counselor, here is their number if you want to call them.  But "critiquing" the situation and blithely offering advice shows an insensitivity that is more than infuriating and just short of appalling.

Don't try to change it.  Don't tell these people what they should do instead, or question why they are doing things with their child a certain way.  There's a reason.  They don't have to justify themselves to you.

Don't try to organize them, their lives, or their home.  Sometimes dealing with a special needs child is a 24/7 job.  It's very draining, emotionally.  It can also be draining, financially.  Coming over for a visit and questioning why the furniture is arranged a certain way, why the walls have holes in them, or why every single door and window has a lock on it is rude.  It doesn't matter if these are your children you're asking this of or some other person.  It's rude to go into someone's home and make comments on the interior of it just because it doesn't fit your perception of how it should be.  It's also rude to comment on someone else's lifestyle just because they aren't making the decisions you think they should make.

Don't make promises you can't keep.  Don't say, we're going to help you, or anything you need, just ask, if you don't mean it!  Parents of special needs children learn who they can rely on very quickly.  They also know if someone is just blowing smoke.

Don't make assumptions.  Don't assume that just because someone has this child, that keeping them out of the loop on family matters is sparing them some stress.  Don't avoid extending invitations to them, either, assuming that they will decline, or out of fear that they will bring their child to an event that is not designed for such children.  We appreciate simple honesty.  If you are having a party, or some other kind of get together, and you want to invite someone, but you're afraid they'll bring their child, who is easily excited or out of control, a simple phrase like this will convey everything you want to convey:  "We are having a get together on such and such date.  We would love for you to come.  We are concerned that Billy (or Joey or Sue or whatever) might be overwhelmed at this function, so we are letting you  know well in advance so you can find a sitter."  Trust me, we get it!  And we will be grateful to you, for sparing us a potentially disastrous evening by letting us know it's not designed for children like ours!  We will also be grateful to you for including us, since opportunities for us to get out are few and far between.  If you are a family member and something happens, don't intentionally NOT tell us about it, because you think it would add too much to the burden we already carry.  We rely heavily on family connections, even if they are far away.  Keeping us out of the loop sends a message to us that we aren't really part of the family and that you can't be bothered to let us know what's going on.

And finally, let us talk.  Sometimes, having someone to talk to makes a huge difference.  Don't assume that our talking to you is a request for you to fix the problem or the situation.  Sometimes all we need is a good listener.  And ask about our child.  A friend of mine had a special needs child and it was very odd...some of the family members would ask about the "normal" kids, but this special needs child seemed to always get left out of the loop, even at birthdays.  It was strange, and again, rude.

Now that I have been on my soapbox, I want to say thank you. Thank you, from the bottom of my heart, to my mother, my brother, and my sister in law, who consistently provide love and support to us, and who help us when we need it.  Thank you to them for treating my son the way they treat all the other cousins/grandkids.  And thank you to the close friends I have who ask me questions because they want to understand, and who provide help whenever they can, even if it's just in the form of a phone call or a quick trip out for ice cream!  We are richly blessed with these people in our lives, the wonderful and gifted teachers that my son has, and the incredible people we know who see him as the special little guy that he is.

The Trip Back

Okay, so the other day this guy came over to give us an estimate on replacing our roof.  He was here about five or ten minutes, then he goes to his truck and pulls out the cutest yellow lab puppy I have ever seen.  Sets it down in the front yard, then proceeds to make notes about the roof or talk on his cell phone or whatever.

I really liked that puppy.

I'm not sure why he brought it and set it down in my front yard.  I mean, what was this guy trying to pull?  Was he trying to distract me while he totted up all the repairs my roof needed?  Could he tell that here was a lady who is a sucker for anything cute and furry?  (except rats, which are NOT cute and which I can't really speak of without saying words a lady shouldn't say).

Anyway, within minutes my children had "confiscated" the puppy and took it to the backyard.  After a little while the man says, "Do you know anyone who wants a yellow lab puppy?"  And  I thought, huh?


Turns out the man needed to give it away due to circumstances beyond his control. Turns out the puppy is in our house, right now, this very MINUTE, playing with our two shih tzus, and turns out I am trying NOT to think about how HUGE this dog is going to get.

I really don't know what made me keep it.  We already had two, not to mention the bird, and the Uromastyx, and the hamster, and the random geckos that my son catches and studies and then releases.  When my husband pulled in the driveway and saw me holding that puppy, he backed out again.  It was a joke.  He didn't really leave.  But.  Many a truth is spoken in jest, as my friend Robbie likes to say.

I guess one of the reasons was Logan's reaction to the dog.  It's not like he sits on the floor and plays with it all the time.  But...the smile that broke across his face when he saw it, and the way he tried to pick it up and carry it, and actually pet it instead of acting annoyed with it the way he does with our shih tzus...that was worth something to me.  And sometimes, for whatever reason, some things are just important, and you don't know why they're important until much, much later, when you can finally see the whole picture.

There is also what I like to call "chaos point".  When your life is so disjointed and so chaotic with the various challenges you have, when you feel like you simply cannot handle one more thing, and then someone hands you one more thing...and then suddenly, all of that other stuff just doesn't matter.  You've reached your "chaos point"...it's like a runner hitting their wall and then continuing on, it's like Ethan Hawke in Gattaca outswimming his genetically superior brother every time, finally admitting that he didn't save anything for the trip back...you reach a point where some things just don't matter anymore. Logan broke a window or he got too much water on the floor, or something isn't going the way it's supposed to...who cares.  I never save anything for the trip back.

Fragile X

Fragile X.  What a strange name.  What is it, what does it mean?

I felt compelled to write about it after a reading an article last week.  A woman and her husband gave birth to a son. By age two, they noticed that something wasn't right.  He wasn't crawling, he wasn't babbling, he wasn't meeting the developmental milestones that most children reach at that age.  Very concerning.  So they had another child, under the advice of their doctor, who felt that a sibling would encourage development.  But the next baby exhibited the same troubling behaviors, and they knew something was wrong.

Fragile X is a genetic disorder that causes intellectual disability.  It can cause problems with balance, walking, development, behavior, speech/language, and learning.  To add to the complication, many individuals with Fragile X also exhibit spectrum disorders (autism) and ad/hd.  There are also physical characteristics that accompany Fragile X including a large head, long, narrow face, prominent ears, and overly flexible joints.

There is no hope for someone "overcoming" Fragile X.  There is no cure.  The symptoms can range from mile to severe, but generally, the affected individual will remain that way well into old age,  After the age of 40, males with Fragile X will start to exhibit other complications.

I write about this to draw attention to the plight that every special needs parent faces, the problem that looms from the minute you learn of your child's disability and remains with you for the rest of your life:  What will happen to them when I'm gone?

There are such things as adult daycare centers. But the quality and quantity of such places is lacking.  There are a few that are great...wonderful, well-lit places with caring staff.  Places where you can leave your adult special needs child and not feel anxious or worried about what might happen when you're not there.  But such places are hard to find.  In the meantime, what does a parent do, who cannot find someone to take that burden off their hands, for a few hours?  What do I do, in the summertime when school is out and Logan is home ALL day, EVERY day?

You take them with you.  You take them with you everywhere...to the store, to church, to buy gas, to run an errand, to the doctor...anyplace you have to go, they are there, they are your shadow, you cannot leave them at home to play on the computer for an hour.  They are your constant companion. I am really blessed...I have family that I can call on for support when the going gets really tough.  I am so thankful for them and for all they do for me...and I hope if they read this, they understand how much they are all appreciated.  But what about people that don't have family and who don't have anyone to turn to?

It's one day at a time, one hour at a time.  All the time.

I Feel For You

The other night my husband and I were watching an episode of "Hoarders".  I love this show.  First of all, it makes me want to throw things away.  Second of all, the motivations of people and why they behave and do the things they do fascinate me.  And I also love a good ending...seeing someone overcome something, or want to conquer a problem...I like that.

Well, we were watching this episode and there was a single dad on there.  He had decided to adopt these two children.  One of the children was about ten or so, and he had some behavioral issues.  He was born addicted to cocaine, and as we watched this episode I couldn't help it.  I just cried.  The house, besides being filled with extraneous things, bore the marks of a developmentally disabled child with aggression issues.  The windows were broken or covered with bubble wrap or peg board.  The mattresses were on the floor because the little boy had broken the bed frames.  There was a lot of footage of this child having emotional outbursts, grabbing things and flinging them at people in rage or agitation, or suddenly hitting his sister as she tried to sit on the couch and play with her toys.  When his father would grab him to try and calm him down, he would become more agitated, hit his father, and bite him.  (Thankfully, Logan is not a biter.)  

I felt so bad for that father and for the kids.  It's an almost impossible situation, dealing with a child who is like that constantly, and then dealing with it alone.  Logan is finally at a point where he can entertain himself for a while.  He doesn't have the fits he used to have, and although he is still destructive in his behavior, he is better able to communicate.  In some ways, also, watching this was a relief.  It showed me, once again, that no matter how rough you think you have it, there is always going to be someone who has it worse than you, and that the things you are experiencing, even though you may think they are unique...These things happen to other people, too, and you are not alone in your situation.

I Am Not Your Punching Bag

A few days ago my husband passed by a house that had a small punching bag for sale.  It's actually in great condition...it's the kind that's upright, on a steel pole and spring, and you fill the base of it with sand to keep it from tipping over.  He bought it from the guy and brought it home.

We were hoping to be able to channel some of Logan's aggression off of us and onto this punching bag.  Last night he put the sand in the bottom and put it up in our front room.  Logan went crazy.  Open handed slaps, knuckle punches, tackles, kicks...he even started beating it with a shirt.  Finally he bent the thing back and I said, "Don't do that!  You're going to get hit in the face!"  So he let it go and he got hit in the face.  He looked stunned.  Not in pain, just stunned.  And offended.  He stared at the punching bag and said, "Hey, that's rude!"  And started waling on it again!

So far it has worked really well when he gets agitated and starts taking it out on us or the windows.  (Yes, he hits windows.)  If you have an autistic child that exhibits a lot of aggression, I would definitely try this!

I am Iron Woman

Today, I tried something new.  I needed to eat breakfast and we also need to go to the store, so all I could find was a packet of plain oatmeal.  I am fine with oatmeal but plain is...kind of plain.  Sort of like glue.  Anyhow, instead of cooking it like that I also put a packet of hot cocoa mix in with it.  I know, it sounds gross!  But, it turned out tasty!  I just might do that again.  Sometime.

Having the kids at home all summer is great.  It really is, because I miss them and worry about them when they're at school.  But...it can also drive you crazy.  You clean the house and then the next day it's right back to where it was.  The dishwasher is broken, so you do the dishes and then as soon as they're done, someone puts another dirty plate or cup in the sink.  They come to you and complain that they're bored and expect you to entertain them.  And then there is Logan, when he gets bored.

It's not very fun when Logan gets bored, because then he finds ways to amuse himself.  Such as:  jumping off the furniture, flinging water at the ceiling, harassing his sister, and then, of course, there are the hoses.

This is something new that he has started doing.  He has several vacuum cleaners and also a lot of vacuum components (for building them).  He has three or four vacuum hoses, and he has started taking a couple in each hand and smacking the floor with them over and over.  He looks like Ivan Vanko (Mickey Rourke) off of Iron Man 2.  Remember that scene, where Tony Stark (Robert Downey, Jr) is in Monaco, and he's racing on the track, and Ivan Vanko appears with his electrical whip thingies that can slice through metal?  That's my son.  Whipping those vacuum hoses around and smacking the floor.  All he needs is a Russian accent:  Motherrr, I am verey boored.  If voo do not entairtain me, I veel vreak havoc on dees house!


I find the thought very endearing.  In the meantime, I think I will be hiding his weapons of mass destruction.

He-Man or Superman?

I think I mentioned this in an earlier blog.  When we took Logan to be diagnosed, we were given a questionnaire. One of the questions was, "Does your child appear to be stronger than the average child?"  And of course, we answered, Yes.

Logan was and still is very strong for his age.  He is small for a seven year old, but wrestling with him is like wrestling with approximately fifty pounds of pure muscle that wiggles all over the place and puts up maximum resistance.  He can move every-and I do mean EVERY-piece of furniture in our house.  If I need him to come with me somewhere, and he doesn't want to go, he will sit on the floor.  I can barely lift him.  We have a heavy, carved wooden bench in our front room.  Once, during a temper tantrum, he picked up the end of it and banged it up and down on the floor over and over.  So, we have these issues.

Anyhow, yesterday he and I went over to my brother's house to pick up a ladder.  I had big plans to get rid of more of that popcorn stuff on our ceiling.  (I really hate that stuff.) Anyway, we got home and the ladder was heavy and awkward.  I sent Logan into the house and carried the ladder inside and set it down in our front room, then left the room to get some more supplies.  When I came back in the room he had set the ladder upright and unfolded it.  I was gone less than five minutes.  I thanked him for his help, of course.

While I was up there, scraping some of that popcorn off, I noticed that the vent that was high up on the wall was closed!  No wonder that room keeps getting so stuffy!  And this is a room with a high ceiling.  You do have to climb to the very top of a very tall ladder to even reach the ceiling.  So.  I told my husband about this and he was very confused.  "The vent was closed?  It wasn't always like that.  Hmm.  I wonder who was up there?"

Who was up there, indeed?  Perhaps I should be sewing a cape.  Size seven. Red.

It's Okay, We Get It

Today we acquired a Uromastyx lizard.  This is in addition to our two shih-tzus, hamster, and the parakeet.  We are becoming a zoo.  Or a jungle.  "Jungle" is a much more fitting word.

I invited a friend of mine and her son to come over and see the lizard, because it's not really that common of a pet.  Well, they came over and Logan went berserk.  I have no idea why.  He was hungry and tired, and he hadn't seen my friend's son in a few months. Perhaps he was overexcited at having a lot of people in the house in addition to new animals.  I don't know.  But he did everything he could to create a ruckus.  He punched and banged on every surface he could find, he screamed at the top of his lungs.  The noise became so loud and so interfering that I could barely hear my friend as she tried to tell me about something that had occurred earlier in the week.  When they left, I apologized and she said not to worry, that there was no need to say sorry.

Well, still, I fretted about it.  Lots of people, in an effort to be polite, insist that no apology is necessary when it really is.  I was so frustrated and so embarrassed by what had happened that I didn't know what to say or do.  I sent her a text apologizing again for all of the chaos and she called me.

She was insistent that no apology was needed.  She said it would be different if Logan were a child who knew better and was just acting that way just to act up, but that Logan was trying to communicate in the only way he knew how, and that he was probably overwhelmed.  She went on to say that I was doing everything I could think of for him, and that I didn't need to apologize for something like that.

Her kindness almost undid me.  I try to put on a good front, saying I don't care what people think and that this is Logan and this is how he is, and most of the time, I really mean it.  There's not a lot I can do to change things when he acts that way.  I am hoping that, as his pediatrician counseled us, that as he gets older these behaviors will lessen.  But to have someone say to me, "It's okay.  Please don't worry.  We get it."  is not something I hear that often, and to be perfectly honest, it almost brought me to tears.

It would be heaven to be able to have friends over and not worry about what affect it might have on someone's mood.  It would be a great relief to get through a meal without worrying about finishing it before time runs out and someone is ready to go.  But that's not where we're at, and I can only say that I am very, very thankful for friends like the one that came over to my house today, and I wish there were more like that in this world.

It's Okay, I'm Swimming!

Yesterday I took the kids to our local state park.  We love this park.  If we go during the week, we usually have the place to ourselves.  There's a beach area, and picnic tables under lots of shade, piers for fishing, and the water is cool- deliciously cool, being that it's a spring-fed lake.  So, I usually meet a friend there and we let our kids bob around in the lake.  Logan and Sarah are required to wear life jackets.  If my oldest gets in the water, he has to also, but he's usually too busy scouring the shoreline for evidence of frogs or passing birds and animals.  He is a biologist at heart.

Well, we had a great time.  It was pretty uneventful for a while, if you don't count the man who drove up in a flashy black convertible and got out to reveal that he was wearing a bright orange tank top, blue plaid mini-kilt, tube socks, and hiking boots.  It went well with his clan insignia and his full, orange beard.  The phrase "somewhere in Scotland a village is missing it's..." oh, never mind.  He walked by and looked at the lake and left.

And I wish that had been the extent of our excitement.  The children were able to wade out pretty far...it stays shallow forever in that lake.  I was standing in the water keeping a close eye on them, not too concerned because they were all happy and bobbing around and having the time of their lives.  Then I saw Logan's feet pop up.  I realized that he was floating in water that was over his head and called him back to me.  He immediately got angry.  "No, I'm swimming! I'm swimming!"  And he continued to float and kick and completely ignore me.

After a few more attempts to get him to come back to me, I realized that I was going to have to go to him.  I grabbed a styrofoam "noodle" and swam over to him, grabbed onto his life jacket and towed him back to shallow water.  He was very angry. He hit and punched my arm over and over, yelling and insisting that "It's okay!" and "I'm swimming! I'm swimming!  I want to swim!"  And I said, "You only thought you were swimming.  You were in over your head."

I tell you this story because it makes me think of all of us, as children of God.  How often are we doing something we're not supposed to do, or how often have we allowed ourselves to get into a situation over our heads, and we insist that we're fine.  It's okay, I'm swimming! And we get angry at God, or at whoever is trying to help us, because we are sure we can handle what's going on in our lives, we think we are swimming. We're really just a life jacket away from drowning.

After I towed him back to shore, he did not attempt to go into deeper water again.  Perhaps when he felt his feet touch the bottom, he realized that he was finally where he was supposed to be, and while the sensation of floating weightless in the lake, his feet not finding any purchase below, must have been thrilling to him, in some way it must have been a relief when he finally touched the ground.

Get Off Your Duff

Okay, so somebody complained because I haven't written in a few days.  I'm sorry!  It's summer, for crying out loud, all the kids are home, and you know...You know how it is.  Sometimes after dealing with autism during the day you DON'T want to sit down and write about it.  I'm just sayin'.

I knew we wouldn't be able to go on vacation this summer, so I've been trying to keep everybody busy by going different places and doing different things.  Instead of hearing "I'm bored" fifty times, I've only heard it five or six. It's a record.  And, due to my efforts to stay busy, I have acquired:  a light tan, a freshly textured bathroom, two pet mice (yes, eewww, geez, I know, long story), and a pet parakeet.  The animals actually belong to my oldest son, and they are his responsibility.  So far, he is doing quite well.  We've had the bird a day.  As long as it doesn't start yelling, "Krabs, Krabs, admit it!"  or begging for a new vacuum cleaner, I think we'll keep it.

So, yes, the bathroom.  Because of Logan's fascination with water, he got over-fascinated one day and wadded up some paper towels.  He then got the paper towels soaking wet, rolled them into a ball, and threw them at the bathroom ceiling.  Great fun.  Except that the "popcorn" started coming off the ceiling and was hanging in shreds.  Yesterday my sister-in-law came over and said, "What happened to your bathroom?"  I replied, "Logan happened."  Oh.  Enough said.

I really can't completely blame the cute little guy, since he learns a lot through repetition and imitation.  We do have his older sister to thank for setting that fine example.

Anyway, it gets depressing, having things in your house moved around all the time, or broken, or beat on, or torn up.  I dreaded walking into the bathroom.  It was depressing.  I hated it.  So today, finally, instead of moping around about it, I got a metal texture spatula thingy and I scraped it all off.  Logan was thrilled.  "We need to vacuum it up."  Knock yourself out, kid.  Then I found a box of all-purpose joint compound in the garage and textured the entire bathroom, including the ceiling.  And I feel great.  My right arm is almost completely numb, but just wait 'til I paint it!

It was a good experience and it reminded me of something I had allowed myself to forget.  If something is depressing you, or you aren't happy, or you're irritated with something that you know needs to be done and you just haven't done it...then get off your duff and do it!  Take some action!  Change something!  And if it's something you can't change, then stop carrying it around with you everywhere!  It's heavy, that burden you have...put it down, for crying out loud!  Later, it may resolve itself, or you might be ready to deal with it...but until you are, try to do some things for yourself that will make you a little happier or help you deal with just life!

And that friends, is my little pep-talk for the day.  See what three hours of spackling will do to a person?

Caroline's Pet Peeve

I have a really good friend named Caroline.  I love her to pieces.  She has an adult son with cerebral palsy.  She raised him largely on her own, and she has been a real blessing to me when it comes to knowing the ins and outs of raising a special needs child.  Autism is not cerebral palsy, but some things are similar...like the school system. And the reactions you get from different people when you take your child somewhere.  And the days that just wear you out and the days where you are so very, very grateful that God saw fit to entrust you with someone so precious.

I think sometimes people see a disabled child and they immediately make allowances for behavior.  And that's fine, and it's right, because some behaviors cannot be controlled as easily as you would a "normal" child.  But Caroline and I had this discussion one day, and I loved what she said.  "Michael (her son) is not his disability.  Michael is Michael, and cerebral palsy is just something that afflicts him."  That is so true. What do people see when they see Logan?  Do they see autism?  Or do they see a seven year old boy?

Sometimes people don't realize that just because a child has autism, or cerebral palsy, or any other mental disability, doesn't mean that the child can't deliberately misbehave.  If you were to see Michael, you would see a young man who struggles to speak and make himself understood.  But if you were to watch Michael and observe him over a long period of time, you would notice behaviors that were very deliberate...obstinancy when he was upset with something.  Calling his mother a nickname that he knows she doesn't like.  Normal things that kids do when they misbehave. Logan does the same thing.  Deliberate breaking of the rules.  Just because someone has a a disability doesn't mean that accountability is completely off the table.

One of Caroline's pet peeves (and mine too) is when she is out in public and she asks Michael to do something.  Michael refuses to comply.  The other person or persons in the scenario say, "Oh, it's okay.  Don't worry about it. He doesn't have to."  Well, I am here to tell you, it is NOT okay to say "It's okay".  A lot of learning with disabled children takes place through repetition.  If a parent is trying to get their disabled child to do something, and it's obvious that it's not an unreasonable request, then saying, "It's okay, they don't have to" completely sabotages what that parent is trying to do.  It is not okay to let them off the hook.  It is okay to push them, just a little, and have expectations.  The same as you would of any child.  Logan is not his disability.  Logan is my seven year old son.  He has autism.  Nathan is my ten year old son.  He has allergies.
Two little boys.  Two different afflictions.   Two little boys.  Two different afflictions that do not add up to the sum total of who they really are.

Don't Mind Me, I'm Just Stimming.

I am sure that some people read my last post and thought, Holy smokes!  A broken window?!  Flooded bathroom???  What the heck!


A lot of autistic children stimulate themselves through different mediums.  The name for it is actually "stimming" and children on the spectrum will stimulate their five senses through various, repetitive means.  For the five senses, of course, we have taste, touch, smell, sight, and our sense of hearing.  So, how do these children "stim" through the senses?

1. TASTE  They may lick themselves or an object over and over again.  They may enjoy the taste of a particular food and gravitate toward that food the most.  They may eat things they shouldn't be eating.

2.SMELL This is pretty self-explanatory.  They'll smell different objects or their hands or they may actually go up to another person and smell the other person.

3.SIGHT Blinking, hand flapping, gazing at a light or out the window for long periods of time, waving things in front of their faces...all stimming through sight.

4.TOUCH  There are two categories under "touch".  There is actually touching something, which can mean anywhere from rubbing a piece of fabric against their skin over and over to scratching at their skin compulsively.  Then there is the vestibular side of it, which relates more to balance and equilibrium, having to do with the inner ear.  They may rock back and forth or side to side or find some other rhythmic motion to do.  I find this interesting because a lot of children have frequent ear infections.  Since a lot of autistic children are non-verbal and don't really know how to tell you when they are in pain, perhaps the rocking motion serves to ease the pain of an ear infection.  It would be interesting to look into this.

5.HEARING  I left hearing for last because this is a big one with Logan.  Stimming through hearing means making noise.  Snapping fingers, clapping, banging things, yelling....This is the way Logan gets his stim on.  His favorite things to do are yell at the top of his lungs.  Usually it's something that doesn't make sense to anyone else.  For the longest time he was yelling a phrase from an episode of Spongebob:  "Krabs, Krabs, admit it!  Krabs, Krabs, admit it!" Over and over and over again.  In the harshest, loudest voice possible.  We had no idea what he was saying and he sounded like he was trying to bark like a dog when he did this.  Finally one of our other children figured it out.  So, he yells a lot.  He also likes to bang on things.  He knows it's stressful to us.  Hey, don't look at me like that.  He KNOWS.  Trust me.  He loves the noise and he also loves the attention it brings.  So, he will bang toys against the walls or floor, he will hit the front of the tv and computer, and...drumroll, please...he will bang on windows.  Hard.

So, what have we done about this problem?  You can't take a child like this and just say, Hey, quit stimming.  You also can't spank him.  Why?  Because he doesn't understand the correlation between the action he is engaging in and the punishment he received.  To him, mom or dad just got mad and smacked his butt.  He doesn't get why, so it's an ineffective deterrent for this behavior.  So, we take him to a different room.  We distract him.  We feed him.  Nine times out of ten if he's acting like that he's hungry.

The other thing Logan likes to do to stim is play in the water.  He will turn on a faucet and let the water run over his hands.  He will get in the shower with his clothes on because the weight of the wet fabric feels good to him.  (They actually sell weighted vests and blankets at some special-needs stores.  The pressure of these items on the body is actually calming to the child.)  So, one day the water play got out of hand and Logan flooded the bathroom. It's not the first time this has happened.  We try to keep an eye on the bathroom, we really do, but it just happens.  We can't lock the bathroom for obvious reasons and we did once put a child lock on the toilet.  He broke it within a week.

I think, somehow, in my Premortal life, that God must have asked me a question.  He must have said, Do you have anything that you specifically don't want while you're down there?  And I must have answered, I just don't want to be bored.  Because if that was my request, He has obliged in a very big way!

Sometimes You Have to Let Go (A Little)

Yesterday while my oldest was at day camp, I took my daughter and Logan to a local state park to meet some friends of hours.  I was a little leery about going, just because I hadn't been there in years.  She assured me that they had a nice beach area.  I'm always nervous when it comes to Logan and water, or Logan and a restaurant, or Logan and a grocery store, or Logan and any errand outside the house.

Well, my good friend was right and the water was shallow, the beach was clean and very, very uncrowded.  Logan and Sarah waded out into the water, and out, and out...and the water never got above their waists.  Slowly, by inches, I could feel myself relax.  I thought of how I went to the doctor a few months ago for something, and out of the blue he starts asking me if I have a lot of stress in my life.  I laughed.  I told him about our family, about Logan, then shrugged it off.  "I want to take an X-ray of your neck," he says.

He was very concerned.  The muscles and tendons in my neck were so tense and so tight, he said, that it had forced my vertebrae to be completely straight. (Your neck vertebrae are supposed to be gently curved, not completely straight.)  He told me this and I thought, So?  What do you want me to do about it?  All of this stuff, it's not going to go away.

Well, he gave me something for it and voila, months later I am feeling ten times better.  I watched Sarah and Logan wade out into the water (wearing life jackets, of course!) and thought, maybe it's time to relax, just a little, and let them just be kids, and not worry, quite so much, about what might or might not happen in the future.

I stepped into the water and felt all my cares slip away.

Of course, that was yesterday.  Today, we have another broken window and a flooded bathroom.  I could say I stepped into the water today also and let my cares slip away again, but mostly I just sighed and mopped it up.  Not every day is a day at the lake with friends, but I'll take them when they come!

Sometimes It's Not the Autistic One

Okay.  So I just said it's "normal" to have an autistic child in my life.  It is.  I also realize that I've written about a lot of the things he does, some things that are not "normal" to other people. Some things that may seem downright stressful and unbearable to some people.  The temper tantrums.  The banging and yelling and water (more on that later) and all kinds of stuff.  But sometimes, it's NOT the autistic kid that's causing the havoc, okay?

So I leave today, this evening, in fact, to go and visit a sick relative who has been in the hospital for forever.  I clean the house top to bottom (temporary bout of insanity), I feed everybody, do two loads of laundry (even thought the washer is leaking...it HAD to be done...that laundry, it reeked!), made sure there were towels within reach of my spouse who although he did not feel well, very kindly agreed to watch the kids (towels...because of Logan's fascination with water, hence the smelly WET laundry in the bathroom), and just made sure that everything that possibly needed to be done, was done before I left.  (Don't press the red button while I'm gone, kids!.  4 8 15 16 23 42! Thank you, Lost.)

So I leave, (Bye honey!  Trying not to feel guilty while I leave you here with three kids and two shih tzus!) and I walk out the door and that's it.

I am gone longer than I planned.  I call my husband four hours later.  How are the kids?

Well.  LOGAN, our littlest, was fine.  However.  My oldest son did this, to his dad and his sister:

"Sarah, I swallowed a black widow spider."

"DAAAAD!  Nathan said he swallowed a black widow!"

"Did you swallow a black widow, Nathan?"

"Yes.  I swallowed a black widow spider."

"So what you're telling me, is, I'm going to have to take you to the hospital, because you swallowed
a venomous spider."

"Well...it was dead, so I'm okay."

"So what you're telling me, is, I'm going to have to take you to the hospital, because you swallowed a venomous spider." (My husband can smell a load of crap from fifty miles away, by the way.)

"It was dead."

"You still swallowed the venom. We have to take you to the hospital."

"Weeellll...I'm not sure it was a black widow."

"But you swallowed a spider and we don't know what it was.  It might have been venomous.  We have to take you to the hospital."

"But it was dead."

"But if it was venomous, you still swallowed the venom."

"Wellll...I'm not sure if it was really a spider.  It might have been a weird looking bread crumb."

"So you put something in your mouth that you weren't sure what it was and it might have been a spider, possibly a black widow or something venomous?"

"I don't think it was spider.  It wasn't.  It was a weird looking bread crumb."

"Go to bed."

And if that wasn't enough, friends. If that wasn't enough:

"Hi honey, I'm on the way home."

"Hi."  (Sounding tired.)

"What's going on?"

"Fang tried to eat a turd out of the toilet."

Okay, that is gross. But I am not surprised.  Fang is our "retarded" dog, remember?

"And then he fell in the toilet."

Okay, he really IS "retarded".

"The kids pulled him out and he had a turd stuck to his face."

The only reason we haven't gotten rid of him is because A. He's really cute. and B. He is so stupid.

"They hosed him off in the front yard."

Did they brush his teeth, too?  I sure as hell hope so, because that dog ain't licking my feet when I get home!

The New Normal

Having an autistic child, or any special needs child, changes your life.  It's not something you can decide to stop doing one day, it's not something you can really pass off to someone else.  It's the lottery you won, the gift God chose to give, the lessons specifically designed for you.  And when you hear someone talk about their life and the things their child does, sometimes it can give the impression that everything is just total havoc and chaos, or that every single day is a stressful climb ridden with raw-edged nerves and restless sleep.

That's really not how it is.  We have Logan, he is who he is, we know him and love him...boundlessly love him, and all our other children.  This is just how things are.  This is our life.  There was a time when we just had our other two children.  And we thought we had it rough, having two kids who were seventeen months apart.  We didn't.  We were ignorant.  We didn't know. And with each year that passes, the memory of what it was like B.L. (Before Logan) fades and fades some more.

I have a friend who has an autistic relative.  Unlike Logan, this young man does not speak.  He is the same one I mentioned earlier who has a photographic memory.  He does, however, communicate using a letter board...he can spell out words.  Someone once asked him what it felt like to be autistic.  He replied, "It feels normal."

Well, of course he had nothing to compare it to.  It's like asking someone who is born deaf what it's like to be deaf.  They don't know what "deaf" means because they don't know what it means to hear.

Well, I know, distantly now, what it was like to live without this child in my life.  But I don't really think about it.  And I don't really care.  That was then.  What is it like to raise an autistic child?  It's normal. More so every year.

L'art Du Deplacement

It must be summer. I have a sunburn.

We went to a local park today, because the kids wanted to go fishing and Logan wanted to play on the splash pad they have there.

Well, something is wrong with the splash pad and it comes on for two minutes and then stays off for fifteen. (I timed it.) But, I have to tell you, those were the most exhilarating two minutes of Logan's day!  Ever!  And I noticed something as I watched him running around amid all the sprinklers and twirly thingies...Logan doesn't just walk or run somewhere.  He leaps.  He skips.  He jumps.  He crouches.  If he did have a "power" (see my very first post), then I think it would be parkour.  Parkour.  L'art de deplacement. The art of movement.  There is something elegant about the way he runs and jumps and "overcomes any obstacle in his path" as wikipedia describes it.

The way that he jumps and climbs, my husband has seriously thought about installing a climbing wall in our house.  I can just hear it now:  I can't finish dinner, honey, I have to belay the children.  One moment.


It's actually a good idea, all things considered, and probably more legal than the Wall of Velcro.

Vacuum Cleaner. Enough Said.

School let out for the summer and she didn't write for days!  What happened to her?  Is she okay?  What have the children DONE to her???

Truly, I'm fine.  After I escaped the duct tape and tore up the ransom note, I put all the kids down for a nap. They'll never try that again!

Seriously, change is hard for an autistic child.  Logan has had a devil of a time adjusting to school being out.  It's because their schedule is disrupted...suddenly everything is different, we're not going the places we normally go, and that makes things difficult for him.  The kids are now, as we speak, camped out on the couch watching "Billy the Exterminator".  Oddly enough, my oldest thought he spotted a copperhead slithering into a closet this morning.  There was no snake.  We checked.  

So, I've been thinking about Logan and how things started with him, and how no two autistic children are alike.  But...there are things you should pay attention to, if you have a baby, that are good indicators that something isn't right.  If your baby exhibits the following behaviors, then you should definitely get them checked out:

-Won't respond to his/her name.  (For the longest time, Logan would not do this.  He still sometimes refers to himself as "Giovanni", a former classmate from a year ago.)

-Does not babble or make gestures by 1 year old (Logan DID do these things, BUT---)

-Loses words (This, Logan did.  Words he used were suddenly gone.  Never to be heard again.)

-By two years old, should be combining two or more words.  

He/She may also exhibit the following:

Poor eye contact

Fixation on a particular object or toy

Does not play with toys they way they are intended (Logan plays with "pieces" of toys.  He will carry around a single piece for a while.)

Makes odd movements, repetitive movements

Sometimes appears to be deaf...won't respond to questions even if you get in their face and repeat it loudly

There are a lot of other things that can cause the above symptoms...But I want to reiterate, as I did in an earlier blog, that you won't be doing your child any favors by ignoring the problem and pretending it's not there.  With autism, the sooner you catch it and the sooner you begin therapy, the better chance you are giving your child to make some progress.  You won't cure him/her, but you will be giving them a chance to overcome social and communication obstacles, however slight their progress might be.

And on that note, dear friends, I will close by relating the conversation Logan had with his father on the phone the other day.  There was a time when Logan refused to even put a phone up to his ear and did not understand what a phone was for.  So, my husband called from work the other day.  We talked for a few minutes.  Then I said, "Logan, do you want to say hi to daddy?"  He took the phone and said, "Hi-yeee, Da-deee!"  "Hi Logan!  How are you?"  "Vacuum cleaner!"  "Wow, I like those too!"  And Logan handed the phone back.  Vacuum cleaner.  Enough said.

The First Day of the Rest of the Summer

Miles to go before I sleep.  Miles.

It started out this way, "Mama, I found this in belly button."  "Mama, can I go in the front yard?"  "Mama, where is Fang?"  (Fang is one of our two shih-tzus).  "Mama, can so and so come over?"  "Therapy is dead.  School is dead."  "Logan hit me."  "Eek-eek-shriek!"  "Stop hitting me, Logan!"  "It's time to go!"  "I forgot your lunch."  This was all before 730am.

Dropped the kids off at school.  Picked up our extra kid and dropped her off at her school.  Came home.  Fed Logan.  Took him to therapy. Therapy is one hour away in a different town and lasts for two hours.  Brought him back to school. Received a phone call from my oldest son.  "Mama!?  Where is my lunch?"  "I dropped it off in the office."  "They gave it to Sarah."  "Did she eat it?"  "I don't know, they gave it to her!"  "Get a tray."  "*sigh* Fine!"    Picked everyone up at 130 (early release, last day of school).  Was horrified but not surprised to see that Logan had kicked the van door so hard that the vinyl is now falling off of it.  Went home and Googled "autism and car seats" (I am tired of having him slam his feet into the back of my chair.  I literally cannot breathe.)  Found a lovely car seat with feet restraints for a measly 795.00.  Does anyone want to buy a house?

Went outside to get the mail just as the postman was pulling up.  Asked him if I could come with him.  Explained it was the last day of school and that I could just climb into the mail truck and I didn't care where we went.  Was rewarded with a chuckle and vaguely uncomfortable grin.  Gave up and came back in the house.

Today is the first day of the rest of the summer.

"Mama, can I come over?  Mama, can I take a nap at your house while the grandkids play?  Mama, where is my lunch? Mama, mother, mommeeee!"


*sigh*

Myth Number 4: Autistic Children Are Not Affectionate and Do Not Interact With Others

Before I talk about this post, let me give you an update on Operation OILHIT:  we haven't done it yet.  Our air pump has disappeared and as soon as we fix that little issue, we will be Inserting Logan into Hollow Inflatable Thingy.  I'm sure he'll have a blast.

I think one of the "myths" I posted on this site was that autistic children do not make eye contact.  That is a myth, they DO make eye contact...but a lot of times, they also avoid it.

A lot of people still don't really understand what autism is or what it means when you say someone is "autistic". They picture Dustin Hoffman in "Rain Man" or they picture a catatonic head banger.  These are both really extreme examples of someone who has autism or other mental deficiencies.

Because autism is a "spectrum" disorder, you will see different levels of communication in different children or individuals.  One autistic person may have no speech at all but actually be brilliant in his/her way of thinking.  Another autistic child might talk you to death, going on and on about one particular subject and boring you with statistics and other irrelevant minutia.

My son is autistic.  His autism was diagnosed as severe.  But he has always interacted with us.  In the beginning, when he started to lose words, his speech was extremely limited.  He would get really frustrated because there was something he needed or something he wanted to say, and he couldn't figure out how to get those thoughts out.

Gradually, through therapy and some very patient teachers and therapists, he is being pulled out of his shell.  He can ask for things now that he needs or tell us about basic emotions he is feeling.  And he loves to play games with us.  These are games that he makes up that might seem redundant to other people but that he finds extremely hilarious.  One such game is "tackle".  He stands in front of me and backs up.  I hold my hands up palms outward.  He charges and rams himself into my hands as hard as he can, and bounces off.  He loves this game, and each time he does it he bounces a little higher until he ends up "tackling" mommy.  I think he would do well at football if he had the attention span for it (he doesn't).  He also likes to throw a blanket over our heads and proclaim:  "It's dark in here."  (Yes, thank you.  We know.)

So what kinds of things do we do to get him to interact and draw him out?  At school he is on a strict schedule and his teacher actually has expectations of him.  He is expected to do work and he is rewarded when he follows those instructions.  He also receives speech therapy at school.  At home, if we want to know something, we ask him a question.  And we don't assume what he wants.  If at all possible, we repeat the question over and over until he gives us some sort of answer.  Sometimes, if it's obvious what he wants, we will give him the answer and have him repeat it.  He also has a specialist that comes from the school once or twice every six weeks to work on educational skills, pattern recognition, opposites and things like that.  Every one that's worked with Logan has had his best interests in mind (except for one time, which I've mentioned before and is pretty much a non-issue now.)

So, since having Logan, my new motto has been "Never assume anything."  Never assume your child can't do something, never assume he/she will never progress, never assume anything about anyone...why they speak the way they do, why they appear to be rude or anti-social, why they can't seem to control themselves.  Sometimes the explanation is not what you think.

O.I.L.H.I.T.

My husband has often made jokes about buying our son a human sized "hamster wheel".  He is so full of energy and so strong that he "acts as if driven by a motor".  (This question was on one of the parent questionnaires we had to fill out.  Does your son act as if driven by a motor?  Um, yeah.)

These jokes go along with the other ones he makes about the Wall of Velcro (see a previous post) and Valium patches for kids (seriously, that IS a joke.  They don't make such a thing.  If they did, we would know about it!)

So, today I went to a local outlet store.  I like this store, even though it smells strange (not bad, just strange).  They have clothes and shoes in there, and little knick knacks, and toys.  Imagine my amazement when I looked at the toys and found a giant, hollow inflatable ball.  It's constructed so that a child over the age of five can get inside it and roll around.  I didn't care how much it was.  I bought it.  (It wasn't THAT much).  So, when my husband gets home, Operation Insert Logan into Hollow Inflatable Thingy (OILHIT) will commence!  Of course, I will write about this very unique experience and let you all know how it goes.

The other endearing thing that has happened recently is that Logan has started singing.  He likes music.  His former Sunday school teacher at church, who we love and adore and works at a local theater, would sit right next to the piano with Logan and told us that occasionally, Logan would be right  on pitch.  As time went on he would try to sing different things, his favorite song being "November Rain" by Guns N Roses.  (Imagine a seven year old belting out:  Don't ya think that ya need somebody?  Don't ya think that ya need someone?)

So, yesterday evening, I'm sitting in the other room and Logan starts singing, "Here comes a tickle spider walking the road!  Gonna get your tummy!  Hi-ho the derry-O!  Tickle spider walking!  Tummy!  Walking the road!"  He was yelling this at the top of his lungs.  The "tickle spider" song is something I made up when the kids were little and he has remembered it all this time.  Which brings me to this other point, about Logan, and a lot of other children like him:  Their memories are phenomenal.  Logan remembers everything. A childhood playmate he had when he was two or three.  Where he stashed a shirt two weeks ago.  The name of a teacher he hasn't seen for a year.  I also have a dear friend whose nephew is autistic.  This child has a photographic memory.  He sees something, his brain takes a picture.  I sometimes think that if autistic individuals could talk, we would all learn so much...things we never dreamed.  In the meantime, I look forward to operation OILHIT...I do hope it's a success.

This Is Autism

Have you ever done the following:

Sat on your bed and tried to paint your toenails while your seven year old rolls around and giggles and proclaims:  I want to go to sleep! (It can be done. You learn something new every day.)

Carried a child out of a church building while they are passing the sacrament (bread and water) while the child yells, "Hoo hoo hoo, monkey, monkey, monkey!!!"

Been whipped on your bare arm with a rubber snake because your child "earned" it as a prize at school.

Tried to speak to office staff at your child's school only to have your child blow a raspberry at them and state, "I want to go home."

Have your child pull on you and hit the sides of the buggy and throw a fit because you are at Wal Mart and they want you to buy...drumroll please...plastic PVC pipe from the plumbing section.

Put a ladder up against your backyard shed...not so you can get to the top of it, but so your kid can climb down off of it.  More than once.

Ran out of spices in your kitchen because your son decided to "cook".

Put a lock on every single window and door in your house.  Not to keep people out. To keep your son in.


Gone to bed completely and utterly exhausted and thought, I can't do this anymore.

Woken up in the morning and thought, This will be a piece of cake.

Looked up at heaven and said, Why me?

Looked up at heaven and said, Thank you for giving him to me to take care of.

Rejoiced because your son said the word, Yes and the word No.

Experienced joy because your son kissed you on the cheek and said, I wuv you...voluntarily, for the first time in years.

Gone up to a school and raised Cain because your son was not being treated right.

Written a letter to the school because you were so impressed with how your son was treated.

Owned at least ten vacuum cleaners.

Given your child six baths in one day.

Thought, to heck with it, and didn't clean your house for a month.

Thought, I can do better than this and cleaned it every day.

Watched the same documentary, every night for two months because it's the only thing your son will watch and it makes him go to sleep.

Gone into a health food store and asked for a valium supplement for your son because you are desperate and you know they sell such a thing.  Had the store clerk look at you with pity while you struggle with your child and say, "I think you need it."

Thought you would, literally, go insane.

Figured if you haven't gone insane by now, then it isn't going to happen anytime soon.

Looked at your child and thought, if he makes that noise, or does that thing, or pulls on me, or climbs on me one more time, I don't know what I'm going to do.

Looked at your child while he's asleep and thought, I have never seen anything so perfect.

Thanked God every day for the things your son teaches you, and prayed that you will have something to teach him.

This is autism.

By The Ankles

Yesterday I had to run an errand and go up to our church for something.  I took ALL the kids with me (plus one extra) hoping to give my husband a much-needed break.

We got to the church building and it soon became apparent that Logan was not going to be able to stay there.  A meeting was about to take place that I had no prior knowledge of.  My plans to occupy the children in the cultural hall while our extra child did what she needed to do fell apart.  Mostly because the extra meeting was a baptism, and in order to do a baptism, you have to take at least an hour ahead of time to fill up the baptismal font.  It's like a giant bathtub.  And Logan loves it and is fascinated with it.  When his older sister got baptized, he talked for weeks afterward about "going swimming at church".  So I knew we had to leave.  I had visions of him doing a belly flop into that water and that would just take the cake, would it not?

So I told him it was time to go and he didn't want to.  He immediately crouched down on the floor.  He wouldn't budge.  He almost yanked my arm out of its socket.  Then he laid down on the floor and stared at the ceiling.  I shrugged my shoulders, grabbed his ankles, and gently pulled him out the door.  He said, "I'm scared."  I said, "Yeah, sugar, you should be!"  But we got him home and all was fine.

We often have this difficulty with him at church.  The music is too loud, or there are too many people, or he wants to hole up in the custodial closet and study all the vacuum cleaners.  When we left church today he suddenly said, "I want go back to church."  I was surprised.  So I said, "Okay, but you have to be good."

The first place he went when we got in there was that closet.  I said, "We didn't come back here for you to come in this closet.  If we're going to be here, you have to go to class."

"Class is dead." (When Logan doesn't want to do something, he says it's "dead".)

"Well, it's not dead, and we are going to go home."  I walked down the hall.  By this time I was carrying him.

Desperately he grabbed my face and squeezed my lips together.  I really hate it when he does this.  I look like a fish.

"I want to go to Primary."  Okay.  Primary is our children's Sunday school program.  We walked down the hall to the Primary room.  But he suddenly he said, "I want a drink."

Oddly enough, the Primary room lies in the direction of the custodial closet, and the water fountain is actually beyond that, right next to said closet.  He was leading me closer and closer to the vacuums without asking to go into that closet, since I had already said no.

We're sorry, Mrs. Stogner, but your son is mentally deficient.


Yeah.

Rattling Cages

Okay, I really have no idea what to write about tonight, dear folks of the blog community.  So I will just tell you what he, the autistic wonder boy of the Stogner family, did, and you can read it and say, I'm glad I'm not the only one, or Better you than me, or Why doesn't that woman get off the computer and do something?

Logan likes to push buttons.  Our buttons, to be more precise.  He doesn't do well with changes.  For instance, if someone has been gone all day and then they come home, it sparks a flurry of bad behavior from him.  We call this "no-no mode" in our house..I.E.:  "Logan is in no-no mode".

No-no mode involves lovely activities such as the follow:  banging things against the floor, walls, furniture and windows.  Wetting globs of toilet paper in the sink and throwing them up in the air so they stick to the ceiling.  Climbing on places he's not supposed to climb.  Climbing on mommy's back and saying, "I want to ride showldurrs"  and me saying, "God help me".  Grabbing mommy around the waist and laughing maniacally. Tackling his brother onto the couch.  Chasing his sister into her bedroom.  Being put in time out repeatedly and screeching at the top of his lungs like a bird because he doesn't want to be there.  Five minutes have now gone by.

My mother used to shake her head and say, "I don't know how you do it."  or "What are you going to do?"

Why, go criminally insane, mother.  It's all part of the plan.

Seriously, how do we deal with such behavior?  I will tell you how we try NOT to deal with it:  We try not to lose our cool.  There is a reason why he does this stuff.  He's hungry. He's tired.  His stomach is upset.  He needs attention.  Whatever.  And the only way he knows to get what he needs is to act this way.  It's like someone turning cartwheels and saying, "Look at ME!  Look AT ME!!!!"  That's what he's doing.  He's rattling our cages and if we roar and take a swipe at him, so what, he got something from it.  Who cares if it was good or bad, is his philosophy.  

It works the best to stay calm, and be patient.  Do we always do this?  No.  We are not computers running a program.  We get tired, we get impatient, and we get really, really tired of having the furniture pounded on and being climbed on.  Is it better than it used to be?  Yes.  Do I think it will continue to improve?  Yes.  And what if it doesn't?  I can always take my friend Caroline's route and say, "Give me a *&(*(*g Xanax!"  

Or we could do the Wall of Velcro.  This is my husband's idea.  We will get some military grade Velcro and put it on the wall.  We will then put some on our children's clothing.  When they get annoying, we will stick them on the Wall of Velcro until they can behave.  It's worth considering.