Postings from the Potty

So I'm posting from my bathroom this morning.  This may sound like more information than you really need but I promise there is nothing too gross going on.  I am fully clothed and even sitting in an easy chair.  (yes we have a very large bathroom, lol).  I'm addressing Z's potty training this weekend and we have made the upstairs bathroom potty training central.

We have been potty training Z since he's been 3 with not so great results until this last year.  It's interesting how autism plays into this.  Z hit age three and I went into potty training mode.  EPIC FAIL.  It was horrible.  I was in tears, he was confused and nothing worked.  It was a mess, literally.  We decided to wait although we would talk about how we go to the bathroom and encourage him to change his pants and sit on the toilet but he really didn't understand the whole bathroom idea.

Looking back now I totally get it.  Z stayed at about a 10mo level socially and verbally for about 3 years.  He continued to develop growth wise and would walk, climb, move around, etc but his speech and how he interacted was really how a 10mo would interact.  By the time he was 3 he was able to get to about an 12-18mo age level for another several years until he was about 5-6.  When he was about 7 we saw him become much more aware of us.  He, for the first time, actually seemed to notice we were there and look for us when separated which was not something we had had before.  This was also the beginning of more verbal language from Z and echolalia or repeating of words or phrases that he hears.  At this point he was testing at about a 2   to 2 1/2 year level.  We are still at that level.  If you think about it, Z is just now getting to the point that he is actually ready for potty training.  Go figure.  Wish I had known that back when he was two!

So this year we began potty training.  He rocked it with learning how to pee in the toilet!  Whoo Hoo.  We have, however, hit the wall when it comes to doing the other part in the toilet.  It's just been 9 years of being able to to go a quite place and be alone and lay in whatever position is comfortable for him and to change now to sitting on a hard, cold, white thing is not an easy transition.  So after trying multiple approaches and doing multiple loads of laundry every day we are now at the camping in the bathroom phase.

I super cleaned the bathroom first and then moved in an easy chair and an Ikea kids table and chair for Z.  We have a computer, ipad, snacks, drinks, zhu zhu pets, blankets, pillows, and music to keep us entertained.  We are working on getting him to go in the pull-up first and then once he goes in the pull-up in the bathroom only we'll work on sitting on the potty.  It's all about baby steps.

So, here I am.  Never thought I'd be here but it's not so bad.  I love spending time with Z and I'm getting lots of kisses.  Brandon and J are keeping us supplied with food and drinks and Brandon gives me a break from the bathroom when he can, which I am  truly thankful for.

So it begins.  Z is a pretty smart kid so I think we will pick up on this quickly.  That is my hope, anyways.  Until then I am truly grateful for a large bathroom!

Bad things happen

I know I've been away from the blog for many days and I'm very sorry about that.  We had a big event at church last weekend and then this whole week I've been feeling pretty lousy so the blog has taken a back seat but I wanted to write a few things down today.

Last night there was a horrible event in Aurora, Colorado.  A gunman opened fire into a movie theater and shot people/children watching the latest batman movie.  I have to admit, this hit home for me.  Brandon loves the batman series, especially the movies, and already had purchased a ticket for a showing this weekend.  After the events of last night I have to admit I'm worried about him going to the theater and seeing the movie.  What if someone hears about the attention this guy in Colorado is getting and thinks this is a good idea and wants to do it himself?  What if this is just the beginning and there are others out there ready to do the same thing in other movie theaters?  Do I really want him to go?  Is it fair to ask him not to?  Is it unpatriotic to ask him not to?

I am not stopping Brandon from going to see the movie.  I am also not asking him not to go.  I know he really wants to see it and I know how much he has been looking forward to it.  Will I be worried?  Sure, but I can deal with that.  It's more important that I realize that things happen out of our control and we have to just realize that there is nothing we can really do about them.  We just have to keep on living.  Life happens.  It happens with the boys, with me, with Gemini, with Brandon, with the church, with extended family, on and on and on.  I am affected by it (I will still worry more while Brandon is at the movie than I would have normally) but I don't have to let it completely change the way I live my life or cause me to life in fear, anger, frustration, hatred, or other ways that limit my ability to live or minister.  If I do that then the darkness wins and I never want that.

So last night was a Dark Night, but it's now a Sunny Day and we are choosing to live it to the fullest.

Water, Water, Everywhere!

Z loves water.  This has been a consistent theme throughout his life.  It's amusing the various ways this manifests itself, however.  Let me explain.

For instance.  Z loves to take baths.  He loves to have bubbles in the bath and then eat the bubbles (I'm not sure if this has the potential to make his sick but I do make sure to buy liquid soaps that have nice fruity scents just in case).  When he finishes the bubbles he wants us to run more water to make more bubbles.  If we refuse he begins to create tsunamis.  He throws his body from one end of the tub to the other and sloshing as much water as he can up the sides of the tub.  Makes me wish we had just given him bubbles.  Occasionally we can lure him out of the tub by singing "bath time is over....", but we have to be very prepared because if we aren't we have a naked, wet, possibly soapy child running through the house, and if we are really having a bad day, into the backyard.

Since it's summer we have added a new dimension to the bath scenario and Grandpa helped.  Grandpa brought over an extra plastic pool he and Grandma had at their house and the pool has replaced the tub.  For instance, this morning Z was in the tub before school, after school, before dinner, and after dinner.  The best part is no bubbles!!  Worst part is the backyard is much less air conditioned then the bathroom.  Oh well. He's happy as a clam.  His most favorite thing to do is to sit in the tub and have the sprinkler on sprinkling him.  True bliss.

Z also likes to watch water running.  He enjoys seeing the water in the kitchen or bathroom sink and enjoys the feel of it on his skin or watching it splash into the water collecting in the basin.  He loves this so much.  You just have to make sure that he aware of how full the basin is, otherwise things get really, really wet. (go figure).  There have been times where I have had Z set up at the kitchen sink with a couple of yellow rubber ducks and a half sink full of water and he's been in water bliss for 30 minutes or more.  There have also been times where we've had to turn off the water under the sink because he can't leave the water alone and we are in fear of needing to build an ark.

Z also likes to drink water.  It's his favorite drink and really the only thing he does drink other than sometimes lemonade and his white grape juice with his morning medicine.  He comes into our bed when he wakes up in the morning and without fail within 5 minutes of arriving, or less, he asks for a drink of water.  Thus it begins. He drinks, a lot.  He has had a sippy cup we got several years ago from dollar general that looks like a water bottle but does not leak.  It was fantastic and we were able to get almost a dozen of them.  Well, time has passed and we are down to our last one.  Dollar general doesn't carry them anymore so we are once again on the lookout for an option for Z to use to drink his water.  There are several components we need for this cup.  It has to have a one way valve.  This is because Z likes to drink in various places and we like to sit on those places and get up with a dry butt afterwards.  We also need one that is not a straw as he just chews on them until they are a mess.  Been there done that.  The last thing we need is something that does not look too babyish.

Z also likes to be in water, swimming.  He loved being at Family Camp and going to the "Ocean".  He would sit in the waves and have them hit his body.  He would wander out as far as I would let him and move among the waves.  When we go to public pools he loves the slides and wants to be in the middle of everything, splashing and jumping.  He is such a water baby.  One of his favorite parts of camp was riding in the speed boats and on the jet skis. Over and over and over again.  Happy as a clam.

I've learned to take extra clothes and extra shoes.  We love crocs and bare feet.  We keep towels handy and know not to let Z take a bath without constant supervision.  With those accommodations Z's love affair with water will continue.  We will continue to figure out ways to allow him to interact with this medium that brings him such joy and entertainment.

I can't believe you said that

Brandon is in the midst of a preaching series that he spoke while at Joni and Friends Family Camp.  Today was 2 of 3 and the one where we address bringing in those who have been invisible.  I highly recommend listening to it and not just because Brandon is my husband.  I'll try to include a link to the sermon once its up on our church's website.  I will warn you now that what I am about to write is going to be written from a very raw, angry, and frustrated place.  If you wish to not continue reading I respect that.  If you do continue reading read at your own risk.  You may not like what I say and to be honest I may not like what I say tomorrow and if I don't I will apologize for it, but this is what I have to say today.  Consider yourself warned.

Our church does not have a disability ministry.  Therefore for the last several years Zachary and I have had to stay home on Sunday mornings from church and Sunday school.  We have just basically dealt with this and figured it was something that had to be endured for the sake of ministry.  There were Sunday's where I would sneak off to other churches that had programs for children with disabilities but we always ran the risk of offending people in our congregation by my doing this.  One time we got "caught" when I went to hear Chuck Colson's daughter speak about her son Max at Willow Creek and there was some displeasure expressed that I was going to another church.  So, Zach and I say home.

I'm tired of staying home.  I'd like to be at church. I miss worship.  I miss seeing people.  I miss hearing my husband's sermons in their entirety as opposed to the snippets that get run by me throughout the week.  Or watching them on the internet.  I've stood by and tried to gently show that we don't quite fit in.  We tried to come for Easter but Zach trying to play the instruments didn't go so well so we only lasted 5 minutes.

It's not only us and that is what Brandon and Ali are trying to show with their preaching these last few weeks.  There are so many families out there that are isolated on Sunday mornings or splitting up with half the family going to church and the other half staying home simply because they are complicated, or different, or hard,     or, or, or.

Today after the service someone, who will remain nameless, came up to Brandon and expressed their understanding.  The told Brandon that we should bring Zach to church, we should just sit towards the back.  When Brandon explained that we could do that but that Zach will still find a way to disrupt the service their response was to tell us they could completely understand what we were going through.  They had a brother who had a disability and their mother had to stay home with their brother on Sundays until he died in his 20s and then she could come to Church.  So they understood.




I want to make something very clear.  I will not stay home with Zachary until he dies and then come to church and I will not accept that as the response of the church as a whole.  There are individual churches who have stepped up and taken responsibility but that is not good enough.  It's like saying, this church will take this type of person and that church will take that type of person.

What is YOUR church doing?  What are YOU doing?  If you are not sure what to do or have no idea where to start the first thing you can do, especially in the Chicagoland and Northern Indiana area is call Joni and Friends Chicago.  They have people who will help you start a disability ministry in your church, right where you are!  Let's stop this now.

The Terrible, horrible, no good, very bad, day....

I'm pricing flights to Australia......

Poor J had a bad day.  We've been having more of these lately.  He actually ran away from Family Camp when we were in Michigan and got about a half mile down the road before Brandon, a golf cart, a minivan, and two sweet ladies on foot caught up with him. (The sweet ladies on foot were not quite caught up to him but we will include them in the story as they were indeed troopers who braved the unknown in search of where J was, and I'm pretty sure they got a ride back in the golf cart).  J's just not handling change right now.  If things are different or don't go as planned or deviate from the norm he's having a hard time coping with that.  I personally blame the weather, who wouldn't it's freakin' 106 people!, but obviously it's more than that as his blowup at camp was during a nice, cool, temperate, week.  Shoot that theory....straight to the moon.

So, what are we left with?  PMS? No, wrong gender.  A self inflated view of his own self importance and expectation that the world should revolve around him and therefore be a perfect, blissful, video game filled with Mario, Luigi, Megaman, Sonic, and all manner of self created papercrafts? An interesting theory and one that may warrant some further investigation but still feeling there's something more.  Autism?  Again, an easy answer but in this case are we using it as a cop-out?  Hmmmm.   Med change?  There's a kettle of dynamite.  Do we add meds, take them away, increase, decrease, drop everything, go totally homeopathic? Sheesh, I'm not ready to touch that with a 10ft pole yet. Let's let the med idea just sit there for a while.  Whew.

So, obviously we are very confused on what is causing this.  Maybe we need to look at how to solve it.  Ok, suggestions anyone....al;dkfja ;oeildkf ladkf ja;odij;laidf a;ldkfadoifja d;ofia;dsjf ;oasdifj;oiaf;aldfkja;ldfkja; aldkfja;difa;ldkf ja;dfja;sdlfkja;odifja;ldfij a;difojaldfk.....AAAAAAAAAAAHHHHHHHHHH...wait a minute!!  Not everyone at once.  One at a time, please.  Discipline?  We need to be more firm with him and keep him more disciplined?  Ok, I'm willing to try this one but I'm confused on its implementation.  The running away meltdown happened out of the blue.  He was fine and then suddenly he wasn't.  There was no action to discipline other than the running away which we did once he was calmed down.  Structure?  Whew, this is a tough one.  We provide structure but the problem is that we can't always control what happens within the structure.  Things happen and we have to make changes.  If we provide more structure are we creating a "pretend" reality where things are always the same and the way is clear and uncomplicated?  Also, we were very structured at camp and again at school where we continue to have these meltdowns.  Thanks for the suggestion, but I'm not sure that's it.  More computer, tried that, less computer, tried that, more time outside, yep, tried that, less time outside, tried that too.

Today he had a science experiment he was super excited about not work.  It crushed him and he fell apart.  It was like his best friend had died and he had to go away from the failed experiment and cry in a corner mourning the loss of the experiment.  He then had another disappointment when the lunch he was sent with didn't meet his expectations and while it was explained this was more of a snack that was not going to alleviate the depth of his disappointment.  The final, crushing blow was when he discovered that mom, who usually brings him home on Friday's since she's at school with Gemini doing therapy with the kids, wasn't going to be able to pick him up because Gemini had thrown up and mom had to take her home.  He was going to have to take the Taxi home like he usually did every other day.  The final blow, full blown meltdown, fall to the floor, staff needed to step in and help hold him down.  The final straw, Australia here we come.

Here's the up-side.(yes there is one. silly) he was able to get it together and made it home in the taxi without beating on his brother.  (It did help that he had noise cancelling headphones, thera-putty (that stuff rocks), and a book to help him manage the ride home).  And he managed to have a good afternoon.

So where does this leave us?  Well, we are still trying to figure out what causes these meltdowns and what to do to make them less likely to happen.  To be honest I think a huge part of it is J's not being able to process emotions well.  He feels things sooooo deeply.  We are working so hard with his OTs and therapists to figure out how to help him but it's really just going to take time.

So, some days are going to be terrible, horrible, no good, and very bad.  We will cry, be discouraged, and question ourselves.  We will feel guilty for not doing enough and feel guilty that maybe we do too much.  Please be patient with us, be patient with J, if you are around when this is going on feel free to ask if there is something you can do but also know that we don't always know what to do ourselves so if we say no it's probably not you.  One thing that always helps is ice sticks, if you have any access to ice sticks when J is around and having a full on meltdown if you would be so kind as to find one for me and bring it to us, that would be wonderful.

Thank you.

Australia really is too far away.

Learning to love

Since Autism makes your sensory system go haywire and, at least for J, makes your understanding of emotions, your own and other's, difficult at best, it becomes necessary to learn to love.  I'm not talking about learning how to know love or even how to experience love.  It's really knowing how to express love and/or receive it.

Many mom's from the beginning of their children's lives give kisses.  Kisses to the cheek, kisses to the forehead, kisses to the chubby feet, kisses all over.  Children learn to associate that action with love.  They then, when they get old enough, go to mom and dad and others they wish to show love to and kiss them.  They are regularly admonished to "give kisses" and learn that this is something special.

I have been struck lately by how J and Z express love.  J is very tenderhearted and looks out for our well being as well as the well being of many other creatures (mice, bugs, ants, worms, flies, you get the picture) and will defend us/them if he senses they are in danger!  I try to keep my bug killing a secret from J, I really think he would consider me a mass murderer if he knew how many poor innocent bugs/spiders/ants/and crawly things I've stepped in in my lifetime.  I'm sure he'd have to call the FBI.  I take this as a show of love even though J doesn't really say that it is.  When he's ready for bed or going to school he comes to me for a kiss.  It has to be on his forehead and I have to make sure that I don't miss the forehead or it doesn't count.  I really can't remember the last time I was allowed to kiss his cheek.  He tells me he loves me and I tell him i love him but I always wonder if my love for him is getting through.  You read in the Love Languages book that everyone has a love Language but it feels sometimes like the boys are non-verbal when it comes to my figuring out if they are really able to know that I love them.

Z is the really funny one.  I worked with him so much to kiss me when I asked for a kiss.  Smack, right on the lips.  This has produced some rather humorous side effects.  For one thing he only wants to kiss people on the lips now.  Fine for us, not so fine for the teachers/aides at school.  He's trying so hard to express his appreciation and they instead divert him into a high 5.  Poor kid.  The other thing that developed was that I could ask for a kiss and his tendency to OCD would compel him to stop what he was doing and come give me a kiss.  Here's where I lose the mother of the year award (again) I would take advantage of this weakness to lure him out of situations I didn't want him in.  If he was balancing on the banister, I'd ask for a kiss, if he was climbing too high into a tree, I'd ask for a kiss, if he was not obeying my call to come get medicine or to go to bed, I'd ask for a kiss.  It was a powerful tool let me tell you.  I had some guilt attached to it but managed to talk myself out of the guilt as much as possible.  However, all things must end and recently the lure of the kiss has lost it's power.  I blame the teachers/aides for coming up with the high 5 idea.  I think he figured out there were alternatives and mommy asking for a kiss was more of a suggestion.  Sigh.

There is one thing that Z does that I think shows something more is in there, although for me it's really just guessing since we can't sit down and have a heart to heart.  He will come up and various times throughout the day and give me a kiss on my cheek.  Not my lips, I never ask for these kisses.  He just comes up and gives them to me.  I was the first one he did this with and just recently he has started doing it with others in his sphere who he feels close to.  For me, I take it as an expression of love.  It may be wishful thinking, and it may be just another quirky thing that Z does that makes me love him so much, but that's my story and I'm sticking with it.

There are many things that Autism has stolen from me and for the longest time I resented that my children's affection was one of those things.  I think what I am learning now is that I just have to look a little harder and a little deeper, and a little more creatively.  God is faithful, he had to do the same thing with us.

Eat at Joe's

Tonight Joe's Crab Shack had a special event where a percentage of your bill would go towards Autism Speaks.  We usually go to Sonic on Wednesday nights because they have Wacky Pack Wednesday where all the kids meals are only $1.99.  Whoo Hooo!  So today when my wonderful husband asked if I wanted to go to Joe's I thought he was asking me out on a date.  Nope, turns out he wanted to support Autism.  I was happy to do that too.

So we load up the kids and head to Joe's.  To be honest this was a bit out of our comfort zone as we usually try to stick with fast food or buffets since Z has a hard time understanding why, when he tells the waiter he wants macaroni and cheese, it takes so long to actually get the stuff, but we were open to giving it a try.  So armed with ipads (Z), nintendo 3ds'(J), and nerves of steele (Me), we entered Joe's.

At first it wasn't so bad.  There were relatively few people there and it was pretty quiet.  They seated us at a table which made me wonder for a second if we should ask to be moved to a booth for better Z containment  but our waiter had already left so we decided to stick it out.  Z loved the decorations and wanted to run around a touch the 5ft fish, spin around on the swivel chairs in the bar (did you know you are not allowed to sit in on a swivel bar stool if you are under 21?  I think that is silly considering that if you are drinking your chances of falling off a swivel stool are much higher than if you are sober and most kids want to sit in the swivel chairs and they are under 21.  I really think they should rethink that idea, but I digress).  For the most part we did ok, Z ordered macaroni and cheese, J got calamari and french fries and Brandon and I got various types of shrimp.

Z tired quickly of the restaurant when he discovered his needing to wait until age 21 to partake of the swivel chairs so he began to ask loudly for the macaroni and cheese.  We kept explaining to him they were cooking it and to be patient.  He actually did really good with the exception of the time where he wanted to check out the bucket of food of the older, single, male, diner at the table next to us.  I saw Z head towards the bucket and my first thought was "oh please grab him before he beheads a lobster", my second on was "please don't let Z start playing with the lobster".  Luckily he just wanted to see what was in the bucket and Brandon managed to pull him back to our table.  Whew, crisis averted.

A little while later our food arrived.  Poor Z took one look at the soupy macaroni and cheese and pushed it away.  Oh shoot, crisis mode.  I quickly turned to the waiter and asked him to immediately put in chicken strips for Z.  He was such a sweetie and was so good about doing that.  I was fine paying for two kids meals I just wanted poor Z to get something to eat, bless his baby heart.  The ipad was keeping his occupied at this time and not too long later they brought out his chicken fingers which he quickly ate with abandon.

After finishing his chicken Z was done and so was I so I took him to the car while Brandon and J waited for the bill and got some of our leftovers to go.  Brandon came to the car where I waited to hear what our final bill was.  Brandon looked at me with moist eyes and told me there was no bill.  The older, single, gentleman who had almost had his food inspected/eaten/played with my Z bought our dinner for us.  I was floored.  The waterworks started and I was totally amazed.  We had just been to camp last week and talked about how many times we get so much unwanted, negative attention and here we were at a place where the man could have been annoyed, irritated, and angry at Z's interference with his dinner and instead paid for our family to eat out.

It was an amazing experience.

Good-Bye Deming House

I'm having a bitter-sweet day today.  Some of you know that last summer J and I spent much of our summer (about 5-6 weeks) at Children's Hospital in their outpatient day program trying to work through J's medications.  During that time I lived at the Ronald McDonald House on Deming Place in Lincoln Park a few blocks from the Hospital.  We had stayed there during a prior stay at in the program a few years before but not for as long.  It was an amazing experience and made a very difficult experience much easier.  We were so grateful for the love and support of the staff of the house and made many friends that are still friends to this day.

The reason today is bitter-sweet is that the Deming house is closing.  Children's Hospital has built a new hospital closer to Northwestern and the Ronald McDonald House organization has build a new building to accommodate all the families they are anticipating will need treatment in the new hospital.  It's an amazing new building that will house many families with a much easier way to check in and stay in the facility.  All of these things are great and will make it so much easier for families who need to be near their children who are in need of help.  Thank you, Ronald McDonald House!!

Here's the sad part.  They are tearing down Deming House.  Yep.  It's going to be torn down.  It's a beautiful old house that was only the second Ronald McDonald House in the country and it's been sold and will be torn down.  It was such a friendly place.  As you walked through the rooms you could imagine the previous occupants living there.  The kitchens were amazing, the sitting rooms were beautiful, the parlor was a study in beautiful molding.  The staff made it personal and homey.

The new location is going to be ran more like a hotel.  They will have 24 hour front desk staff and each floor will be self sufficient.  I'm hoping we will not need to stay there because staying there means the boys need medical attention but also because it will remind me of the loss of our beautiful home away from home that brought us such comfort during such a difficult time of our life.

Thank you, Deming House.  You are loved and will be missed.

Mom wins the mice war

While we were away the mice played and Grandpa went to battle.  The mice are gone!!  Grandpa killed the cheeky little ....... well you understand.  We were blessed by Grandpa coming in while we were away to deal with our mice problem to spare Josh the terror of seeing his furry friends killed in brutal and horrible ways and mom the frustration of various mice catching methods failing miserably.  The main issue was walking into the house with the boys and finding a dead mouse laying in the middle of my floor.  Blech.

Thank you, Brandon, for getting rid of the cheeky ........ and restoring peace to my home.  After I steam cleaned the floors and all surfaces that is.  I feel much better now.

Camp Happens

I've been away from my computer for a couple weeks so I've not posted. The end of school, beginning of Family Camp and several events in our family have all contrived to curtail my blogging but I've managed to steal a few moments thanks to a rain storm so I'm going to take advantage of the opportunity.

Most of my posts have been about Autism but I'm going a different direction this time around.  I want to talk about Joni and Friends Family Camp.  Joni Erickson Tada is a woman who when she was a teenager dove into a shallow lake and broke her neck.  She managed to take the initial bitterness and turn her life into an amazing testimony of disability rights, and opportunities in the Christian community.  One of the fantastic ministries born of her dedication is Family Camp.

Family Camp is for families of children/adults with either/or physical, mental, or developmental disabilities.  They have STM (short term missionaries) who pay to come to camp for a week and are teamed up with both the children and their siblings to give the whole family a way to spend the week together.  The kids are aided by the STMs from breakfast to bedtime giving mom and dad time to spend together or with the family doing everything from horseback riding to going on a Zip Line.  It's basically a week of being taken care of and loved on.  The astounding thing is that even the STMs pay to come to camp!  Yes, you read that right, people actually pay to come and take care of you.  Who does that?  Well for us it was 4 amazing people who made my boys happy and comfortable and allowed me to decompress.

We are happy to be home but miss our new friends.  It seems like camp passes so quickly!!  What an amazing time was had by all and we can't wait for next summer.  If you are interested in more information please let me know and I will provide any and all information I can.

Good is good.

All over the place

It's been an interesting week.  I'm still not sure what to do with J and his mood swings, or with Z and whether his OCD is just the Autism or if it's a side effect of medication.  That being said we had a great week with the boys.  J played outside several times and continues to show himself as a fun, quirky child.  Z is acting more and more like a 9yo typical boy by getting into dirt and insisting on bringing all kinds of bugs and creatures into the house to examine more closely.  

I think, for me, I struggle with being too much in the "moment".  When we are in the midst of J running away from home and being worried about the "nosy" neighbor calling the cops about the child being attacked by two grown men I tend to go into fix-it mode.  Planning out how we are going to keep this from happening again.  The reality is that that was a moment.  It was one moment.  There were a few moments at various times of the week, a couple at school and a couple at home but they were all that, just moments.  I think for me I need to realize that until the moments become more hours or days I need to realize that they need to be dealt with, not necessarily fixed.  By focusing on the moments I'm possibly missing the big picture and treating minutia when, in reality, things are going pretty good.

Since it's Sunday, I'm going to wax spiritual for a moment.  I think this is what I do spiritually as well.  I get caught up in the moments of this life.  I focus on what is happening here in this life and how to fix it and how hard it is and allow it to swallow me up sometimes.  The reality is that this life is but a moment in the span of eternity, LOL, and for that I am grateful.

MAMA vs the Mouse....this means war

Alright.  I've had it.  I have been more than patient with these mice.  I've tried to trap them humanely and have approached them in the most PETA sensitive way possible.  That is now officially over.

This mama is mad.

You know what this mouse did?  He chewed one of my Vera Bradley bags!!  Can you believe it???!!!???  The audacity!!  The little @#$%#@ thinks he can come in here, eat my food, poop on my floors and eat my VERA bags???  He's got another think coming!!

I admit, this was one of my bags that I got from the thrift store and I did leave it on the floor with some crackers I had not finished from the day before open inside it......BUT, it's VERA!!!!!

Where can I buy dynamite?

What a week!

Sometimes things are really going great and sometimes things are really a challenge, and sometimes they are really great and really a challenge all at the same time.  Well, we are in the middle of one of those times.  This is my get real time and that was why I started this blog.  To let people see the real side of being a family dealing with autism and for other families of kids with autism to see that they are not alone, so here's where we get real.

We have had a week.  It seems like both boys have hit the wall this week and I'm still reeling.  I have to preface this statement with the disclaimer that this type of thing happens for us typically once or possibly twice a year.  It almost seems to cycle for the boys, but prior to this they have been on different cycles.  Z's cycle has been to be more difficult in the fall and J's has been pretty much during this time but they have typically been over their issues by the time the other child hits their cycle so we just go from one cycle to the other.  Tiring but not overwhelming.  All that to say, we have been here before.  This time, however, both boys suddenly seem to be on the same cycle.  They both seem to suddenly be not handling things very well and we are struggling to figure out what is the underlying cause.  

The biggest issue is that they are both, at the same time as they are struggling, having huge advances with social awareness, interaction, communication, etc.  We see the amazing things we saw last week where they played together but this week where J wanted to kill himself because I had him get off the computer and Z kept getting into the garage and climbing onto the minivan because he could not stop obsessing over going to Toys R Us.  What is this?  What craziness takes over my poor kids minds?  Are the medications causing this or do I need to increase their doses to help them cope?  Do we lose the interaction and communication if we lose the obsession and mood swings?  

My greatest fear is that we will spend another summer like last summer where we had so much of the summer spent with J in the hospital and I'm worried that Z is going that same path.  I feel so much like I am in a constant battle with a huge dark monster that is Autism that sometimes is amazing and beautiful and smart and funny and cute.  Do I fight it?  Do I embrace it?  Do I mimic it?  Do I ignore it?  And the biggest question of all, when is "it" Autism and when is "it" my wonderful, beautiful, amazing, child?

Why would a faithful God?  Tonight I think I'm going to have to just sit quietly and wait for the answer.

Little Miracles

We had something really fun and exciting happen the other day.  For many of you this may seem like a very everyday thing but for us it was very exciting!

We had taken a walk to our local Dairy Queen (I love Buster Bars, YUM!) for an after dinner treat.  Z loves to ride in his wagon so we walk over as a family.  When we were sitting and eating our treats J decided to take a run down the front of the strip mall.  Z noticed him doing this and immediately put his ice cream cone down on the table and ran after his brother giggling and laughing.  Both boys ran the full length of the strip mall and back again.  Z got back in his wagon and began to eat his cone.  J decided to run again so Z, once again, put down his cone and ran after his brother laughing and giggling again.  Both boys did this several times until J got tired and started walking instead of running.  Z wanted to run again and kept saying "running".

Again, this seems like just your plain old run of the mill brothers playing together, however, our boys have NEVER played together.  Up until this point in our families life the boys have played next to each other or in the same room (sometimes) but not doing the same thing and interacting with each other.  This is a brand new thing and has just started this week!!

So, this momma is really excited for the amazing Mother's Day gift her boys have her that they spent years making.

Thank you!

Crushing Blows

Many people believe that children with Autism don't have feelings.  The thing is they do, they just struggle with other people's feelings and sometimes understanding their own.  Take J, for instance, he has intense feelings.  He feels things so deeply (thus his empathy for the impending death of the mice haunting our house) that he struggles with how to process those feelings.  Sometimes those feelings burst out of him in very loud laughter, screams, yelling, etc.  The interesting thing is that J struggles with identifying his feelings.  We can see him looking anxious and ask if he's feeling anxious.  He will tell us no. In fact he may be incredibly anxious but not be able to recognize that that is what he is feeling.  Sometimes it may take him a day or more to realize that he was feeling anxious at that time 24 or more hours before.

J also struggles with understanding what other people are feeling.  Most likely because he doesn't have a clue what he is feeling so how in the world can he figure out what someone else may feel like.  Besides, he's not them, how should he know what they would feel like?  It's an amazing train of thought but it does make for some difficult situations.  This is one of the issues that led us to placing J in Giant Steps which is a specialized school for children with Autism specifically.  We realized that he struggled so much with both identifying his own feelings and imagining what someone else would do/feel/think, that we needed some pretty intense intervention.  This was after several meltdowns at our previous public school when J melted down after being asked to write a letter to a dead president.  He still melts down when asked to imagine what someone else would think but the school he is in now is better able to manage these meltdowns and get him back focused on the rest of the day.  Whew.

So all this leads me to the news of the day.  Maurice Sendak has passed away.  I remember him from his writing of Where The Wild Things Are.  We knew J can take these things to heart and we wanted to make sure he knew so we told him tonight about Maruice's passing.  J's immediate response was, "He also write Little Bear.  I liked Little Bear much better."  I had forgotten that Sendak had also penned the Little Bear series that J still watches on Nick Jr.  J processes this for a while and talks about some favorite episodes he has.  At this time Brandon mentions that many times people die in threes.  I have to admit.  My heart sank.  I started to panic, where was Brandon going with this?  I held me breath as Brandon went on to express to J that Moose A Moose and Z had already died so therefore Sendak was the third death.

For those of you who don't know the Moose and Z story Nick Jr had these two characters narrating their daytime programming for many years.  Recently they stopped using them and have started using Bob the Builder and Dora instead.  There has been a huge outpouring of rage on the part of many parents about this and the parents are calling for the return of Moose and Z.

When J found out that Moose and Z were gone it was a crushing blow to him.  He could not believe that Nick Jr would do this to him!  Oh the humanity.  I sat in the front seat of our van and rolled my eyes.  I have to admit.  Part of me is so proud of him for having such strong emotions, especially for these two maligned cartoon characters.

I advised J to write a strongly worded letter to Nickelodeon expressing his outrage at their unfortunate treatment of his beloved characters.  He looked at me very confused and said, "Um, if it's ok with you I think I'll just go watch SpongeBob."

Crushing blow.

The Haircut

Ever since Z was little he has hated having his hair cut.  I thought, at first, that is was because of the sensory overload with clippers and people touching his head.  I'm wondering now if it's because he just doesn't like change and having his hair cut off is a pretty big change.  Take tonight for example.

I walked in the door from work and was met with Z asking for Popeye's Chicken.  Now let's go off on a rabbit trail for a minute.  Z LOVES Popeye's Chicken with his whole heart.  I've tried very hard to make chicken that was close to tasting like Popeye's but no luck.  We've even had to drive to Popeye's early in the morning to show Z that the restaurant was closed to get him to stop asking for it, over, and over, and over...well, you get the idea.  So, when I heard Z asking for Popeye's Chicken and knowing that I had no formal plan other than Brandon working on tenderizing some ribs in the slow cooker I thought this was a good opportunity to get something.

Z's hair was getting too long!  It was starting to curl on the ends and with the weather turning hotter I thought it was high time for a summer buzz cut.  Thus, my inspired idea.  Z gets Popeye's Chicken after he gets a haircut. Being the cheap people we are and learning from experience that people do not take kindly to screams in the salon they are getting their hair cut in, we have hair clippers of our own.  The big trick is getting Z to sit for a haircut.

Let me give you some background.  We found this fantastic place that cuts hair in Schaumburg.  Love it!!  They have cute cars for the kids to sit in and a play area for them to play in.  They even have people who will watch your kids in the play area so YOU can get a haircut.  Inspired!  So we took Z there.  Magically, the first trip went rather well.  The second trip, not so much.  We pulled into the parking lot and Z immediately started to scream.  I opened the door to the minivan and had to wrestle him out of the car.  It took us about 15 minutes of wrestling him towards the door (we are still outside at this point) before I finally gave up.  The shag look is in, right?  So we left it alone for a while until the poor kid could barely see past his bangs.  This time we once again pulled into the parking lot and, once again, huge meltdown.  So at that point we bought the clippers.

Now, you would think that having Z in his home with all his favorite people and things around him would make him much happier about getting his hair cut.  Nope.  Z's haircuts look one of two ways.  Either I swoop and cut in the bathtub (don't even think about looking to see if it's an even haircut, poor kid looks like he cut his own hair but hey, he can see!) or one of us wrestles him while the other one buzzes the kids head. The second approach is especially dangerous since you never know when you may get whacked either by Z or the clippers.  I do tend to get a bit crazy when cutting hair.  Either way the hair gets cut we end up with a mess, someone (or everyone) ends up really sweaty, and/or we swear we will never do this again.

So tonight was the night where I decided to cut Z's hair, dangling the promise of Popeye's Chicken as a carrot in front of him ( you would have thought it was a carrot for all the good it did).  We found out that bribes do not work with our son.  I swooped and cut to get the longer pieces cut and then we finished up with a buzz cut.  I think we made progress.  Z actually sat still for most of the swoop and cut and once the clippers started doing their job he settled down for that part too.  Brandon got a bit beat up and I was on the floor wrestling with Z at one point but the end result is that Z got his summer haircut.  Whew.

I think the best part, for me, was afterwards where he made a point of looking at himself in the mirror to see what his new haircut looked like.  He's never done that before.

So, what are we left with?  Well, Z still hates haircuts and I still give him as short a haircut as I can so we can go as long as possible between cuts, however, he sat still for more than he usually does and actually wanted to see what he looked like afterwards.  I consider that progress.  Sometimes you have to celebrate the little things.  They really do add up.

Here's to slow hair growth!!

(Anyone want a haircut?)

Things in unusual places

So tonight J had a bit of a meltdown.  Bless his baby heart.  He just really likes things to be a certain way and he does not like his things to be messed with.  With that in mind we make sure to have him keep his bedroom locked as his brother loves to get into it and explore.  Not a good mix.  So tonight J went upstairs to put away a stack of shirts and I suddenly heard screams and wails from the upstairs region.  "I can't believe it, he did it again!"  I knew immediately what had happened.  Z had gotten into J's room and "rearranged" things.  For some reason Z likes to take J's plastic ikea table that he uses to put puzzles together and put it on J's bed then balance an animal or two on top of that.  I think he considers it art, J considers it destruction, I actually consider it amusing (I know bad mom award).

I think the reason I consider it amusing is I've grown to just embrace the idea that in our home things just turn up in unusual and unique places.  I actually consider it a good day when necessary things (car keys, house keys, purses, wallets, etc) stay where they are put.  I think for me I've adopted a if you can't beat them join them, or at least be amused at them.  For instance, Z loves blankets.  Quilts mostly.  We have several quilts that Brandon's mom and grandma have given us, some being very old and sentimental and we are trying really hard to preserve them but that is proving harder and harder.  For some reason Z finds them no matter where I hide them.  He then wears them around the house, puts them on the side porch where he likes to go burrow into a pile of various pillows and blankets, or shoves them into a storage bench he likes to close himself into.  I find them when he's at school, wash them again, hide them in a new place and our game of hide and seek starts all over again.  Believe me, this child is not wanting for quilts.  He's got at least 4 of them on his bed!

Something else we find in unusual places is clothing.  Now I know many of us have problems with our kids leaving their clothes all over the house.  The thing with Z is that he starts to strip as soon as he hits the back door.  Yesterday I came home from work and stepped into the house to see his underpants, shorts, and t-shirt on the back entryway floor.  He really hates to wear clothes.  I have learned to just be glad that he keeps his clothes on everyplace else other than our house.  I'll take my victories where I can get them.

Toys are also found in unusual places.  These bring me the most amusement.  I have found beanie babies in the bushes.  I realized that Z squeezed them out a partially open window, probably figuring that even if he wasn't able to get outside he would give his beloved stuffed animals freedom.  I have found beanie babies in our trees.  For those of you who don't know Z loves to climb trees and my thought was he probably just wanted some company.  I think Z would stay in the tree 24/7 if we let him so he figured his beanies would feel the same way.   I have attempted to go bed before and found my bed invaded by friendly if not prolific wind-up toys or a whole zoo of little people animals.

The boys just really like to control their environment, and to be frank I can't blame them.  If I had a disorder that made much of my life feel out of control I would want to have control over as much as I could.  I guess in that becomes my reality.  How much do I let them control their environment and how much do I make their home a place of peace and calm where they can control how the interact with it?  We have to teach the boys how to interact with the world and how to adapt when they are out of their home but when we are home I want them to be comfortable and at peace.  That is not always possible, especially when J leaves his door open and Z uses that as an opportunity for free expression on J's bed but that's a level of adaptation I'm willing to work with.

Maybe things aren't so unusual after all.

How many times do I have to repeat?

We are a visual family.  I have discovered that using verbal instructions is only partially effective at best and visual cues are the best.  When I say to J to go upstairs and get his socks out of his drawer and put them on he will quickly go upstairs for anywhere between 10 and 15 minutes after which point he will come back downstairs and ask what he was supposed to be doing upstairs. Or he will come downstairs having completely changed his clothes and have nothing on his feet.  I admit there are times this amuses me and times it infuriates me.  Mostly depending on how late we are.  

With Z it is even more dicey.  I can say to him to go get his sippy cup when he comes and asks for water.  I know he has had the cup within 5 to 10 minutes of his requesting more water but for some reason 9 times out of 10 I get something brought to me other than a sippy cup.  I've had bowls of cereal, stuffed animals, dirty socks, his father's empty water glass, pretty much anything he can get his hands on figuring hes bringing me something.  I think he figures it's some kind of exchange.  He brings me an empty bag of chips and I give him a full sippy of water.  

So we have found that having a visual picture or having things written down is a huge help.  At school the boys carry around small paper size white boards where they are able to write down lists or choices when they come up quickly.  We also try to have pictures of some of Z's favorite items so he can choose what he most likes.  

I think what I have found out is the more I try to get the boys to act like regular kids and do what typical kids would do the more frustrated everyone gets.  Once I realize how their brains work and what works best with their brains then I can figure out real world solutions that help them to navigate through this sometimes alien and unaccommodating world they find themselves in.  This means that I have to repeat myself over and over again with minimal results or I can write it down or get a picture of it and say it once.  

Autism vs the mice.....the sequel

So our last installment of Autism vs the Mice left us with the cliffhanger of Brandon wanting the mice dead and load testing various surfaces and J pleading for the lives of the unsuspecting mice.  You seriously can't make this stuff up.

I places the traps in various places where mice had been sighted around the house after loading them up with peanut butter and chocolate.  I was ready to catch me some mice.  The next day I checked the traps.  Nothing.  Seriously, there was not a mouse to be seen in any of them.  Ok, so maybe this would take a few days.  Well, it's been several days and so far no mice. 

So what's up?  Did I scare the mice away?  Were they so intimidated by my threatening, British made, mouse traps (we really are quite international here) that they immediately packed up and moved out?  Are they regrouping for round two?  I really think someone should write a book about mouse psychology.  I'd buy it, at least if it would help me catch the little turkeys.  

So, there ya have it.  The mice seem to have backed off but we are not sure if they have made a full retreat.  If anyone has any sage advice or can off any mouse whisperer services let me know. 

Never more than I can handle

It's interesting, I have always been told that God will not give us more than we can handle.  I have heard that and wondered if God has entirely too high an opinion of me.  There have been seasons where I have just wanted to pull the covers over my head and pretend the world away.  Honestly there have been times where I have actually done that.  The thing is that there is so much guilt over the idea that we, as moms, are not able to handle what we are given.  We are supposed to have it all and be able to do it all, work, raise children, keep our house clean, keep our husbands happy, helps others, it goes on and on.  The problem is that when a mom gets a child with special needs they don't get a pass.  They are still expected to do all these things and deal with their special needs child.  Is this fair?  No, but it does happen.

I remember when J was 5 and Z was 3.  One day Z was in the backyard playing and I got a phone call, I ran into the house to answer the phone and as I walked back outside talking on the phone I realized Z was gone.  I ran around calling for him and called 911.  As I was on the phone with the woman dispatcher she indicated they had a call of a child at our corner gas station.  This gas station is at the corner of two 4-6 lane roads counting turning lanes so it's pretty major.  I grabbed J and ran to the gas station with a police officer following. We saw Z and brought him back home.  I remember standing in my kitchen with the police officer who asked me how I was going to keep this from happening again.  I looked around the room at the windows that only opened 2 inches to keep Z from climbing out them, at the outside door that was double key locked both inside and outside, at the bars on the upper windows that opened more than 2 inches, and I didn't have an answer.  After he left I started figuring out a plan B and that was where we found Gemini our amazing Autism Service Dog.

I'm not trying to start a pity party or look for extra sympathy from those who do not have special needs children since many parents have times in their lives where their children go through seasons of having special needs.  What I am doing is speaking to the moms of those kids with special needs.  It's ok to not be ok.  It's ok  to not have all the answers and to just make the best decision you can make at the time. It's ok to leave your child with a baby-sitter so you can go out to eat with your husband or even alone with a good book and not talk to anyone for a whole night.  It's ok to ask your doctor for medication to help take the edge off the depression you are experiencing due to the extreme stress and pressure you are under every day or to help deal with the anxiety you feel over trying to keep your child save all the time.

Sometimes you get more than you can handle and it's ok to ask for help.

Autism vs the Mice

What an adventure we are having.  About a week or so ago it became apparent we may have mice.  We noticed rustling in places where no one was.  Then earlier this week we had an unfortunate incident.  Brandon was in working at the dining room table and I was in the living room.  Suddenly I heard a horrible scream/yell from the dining room.  I seriously thought Brandon was having a heart attack.  I ran into the dining room to see my husband of 13 years standing on a chair explaining to me that a mouse had jumped out of on of my bags and ran across the floor.  I asked where the mouse had gone but he was to traumatized he wasn't able to tell me.  I figured we get some traps and take care of it.   I grew up in the country and mice happened.  Unfortunate but not a huge deal.  It did take a while to coax Brandon off the chair but eventually he came down and we went to bed.

Over the next several days any creek, squeak, rustle, and thud was attributed to the mouse.   Based on that assumption we appeared to have about 20-30 mice and possibly a polar bear.  (luckily the polar bear ended up being Z jumping off his bed upstairs).  J came up with an elaborate trap to catch the mouse.  It involved a box, stick, yarn, and bread with peanut butter.  It was quite elaborate although there was much angst, tears, and yelling when Gemini came in from outside and promptly ate the bait.  What can I say, she loves peanut butter.  Poor J was crushed and I made it even worse by laughing.  I know, once again I'm not getting the mother of the year award, I laughed.  It seriously was funny.  J didn't think so.  I'm such a bad mom.

So we now come to last night.  I was so tired that I went to bed early.  Little did I know the drama that would take place while I was innocently sleeping.  Brandon decided about midnight that he heard more rustling in the bag that had put him on the chair in the first place.  J apparently was up getting a drink of water so Brandon being the brave man he is decided the best thing to do was to throw my bag out the front door onto the sidewalk.  Now let me clarify this.  I'm not talking about 3-5 feet from the front door, I'm talking 10 or more feet that Brandon chucked my bag.  He was so brave he had J open the door while he threw my bag.  He then decided that perhaps he should check if I had anything of value in the bag.  So he got J to look in the bag after they hit it with a broom handle.  (remember, I'm upstairs sleeping peacefully while this injustice is being done to my innocent bag).

So the next morning at 6am I get up and am getting ready.  Brandon happens to mention to me that my bag had to be tossed outside due to the mouse infestation he was sure was inside of it.  I went downstairs and realized my bag was still on the sidewalk in front of our house with part of the items that were inside (yarn, package of gum, rain cover for my ipad, etc) spread out around it.  They had left my bag outside on the sidewalk all night long.  When I asked them about this they felt this was completely reasonable since there could have been a mouse inside and you don't want to put the purse by the front door, then the mouse could run back into the house.  You also want to make sure the mouse has plenty of time to decide to leave the purse.  I had no words.

So after work today I went to the store and got three traps.  I had to make sure that I got ones that kept the mouse alive as J is completely traumatized at the idea that we would even consider killing any of these mice. Brandon is pretty much ready to nuke them all and Z is blissfully unaware as he travels around the house dropping crumbs.  So right now the mice are winning the the Autism vs the Mice battle, however, mom has entered the battle and believe me, she's in it to win it.

So, why would a faithful God create mice.  I'll get back to you on that one.

My Rebellion

I have to admit.  I am a rebel.  I have always been a rebel.  You tell me I can't do something and that's pretty much the only thing I want to do.  Not so great when you are a pastor's daughter and then a pastor's wife.  It has served me well when I've had to do things that are not bad just difficult, however.  So, you take the good, you take the bad, you take them both.....(grin).

Ok, so now to be serious.  I have to admit I'm not running on much sleep Zach has been up for several nights with a cold so I've been up for several nights with Zach so take this post for what it's worth and forgive any ramblings.  I rebel against Autism.  I'm really guilty of it.  Sometimes I succeed at it and sometimes it kicks me in the butt and I have to pick myself up and give myself a pep talk, but I always keep rebelling against it.  I just hate to be told I can't do something.

Take today for instance.  I need to make something for the breakfast we are having at church tomorrow.  I can totally go to the store and buy a package of donuts or danish and everyone would understand and probably love them.  No big deal.  However, that is not me.  I LOVE to bake.  I love to create things and love to make yummy things in my kitchen.  The thing is that it is really, really hard to do with the boys.  There have been so many times where I have tried to bake and ended up with Z playing on the floor in a pile of flour.  Z loved it, not so great for baking edible items.  So I tend to get nervous about baking but really want to try.  So today I decided to rebel.  I decided to make cinnamon rolls from scratch for the breakfast tomorrow.

Here's the thing.  It worked.  The boys played nicely while I made the dough and other than a few trips to the bathroom with Z and a few computer issues everything went really well and my dough is rising.  Haha, Autism, I win!!  I know to many of you this seems so silly but to me it's a nice feeling.  There are many battles with Autism that I can't win yet but I'm able to make home made cinnamon rolls and that, for today, is a victory.

Pop Rocks on the floor

OK, so there are so many things in life that I try to be careful about concerning the boys.  I try to anticipate issues that may arise in new places or situations and prepare the boys as much as possible for those things.  I try to adapt our home to make them comfortable and have places to relax and feel secure.  I succeed at this sometimes and not so much at other times.  Tonight I failed miserably.

I found a package of pop rocks at the food pantry tonight.  It brought back such fun memories of my childhood and eating pop rocks when I was about J's age.  I could not wait to get home and have J try them.  I came home and showed them to J and had him try a couple.  He put them in his mouth and looked at me with a panicked look on his face.  He asked what they were and I told him pop rocks.  He immediately spit them out on the floor of the kitchen and asked why I would do this to him?  I told him I liked them and thought maybe he would like them too.  Didn't work.  He immediately teared up and looked like I had just told him the internet was broken.  Seriously, my chances of getting the mother of the year award just died.  It's over.  

I went into the living room to have dinner and put my feet up and J came in a while later to say goodnight.  He once again asked why I would offer him pop rocks, asking in such a way in imply that I was trying to poison him in some way.  I simply told him I thought he would like them since I like them.  After J went to bed Brandon told me he had never had pop rocks either.  I was really surprised by that so I offered him the packet.

I looked over at Brandon and the look on his face was priceless.  He had the most pained look on his face.  I started laughing so hard.  It was so funny.  He asked how long it would continue to pop.  I told him until they dissolved.  He didn't look pleased.  It was so funny.  

I realized that this was a situation where I was totally not clued into the idea that for a child with autism pop rocks would rock his world in a very bad way.  I totally missed that this was such a really bad idea and would compromise his trust in me.  I didn't realize soon enough that my liking something isn't enough to introduce it to the boys.  Things have to be more deliberate, more planned, more measured, and more thought through.  

It's Autism Awareness month and I have to be more aware of Autism.

Were did my floor go?

So the boys are out of school this week for Spring break.  J is, of course, thrilled and has loved being able to play on the computer and do his own thing, for the most part.  Z, I'm not so sure about.  He's been sick a lot of this week.  We've been trying to figure out what's wrong with him as he's been running a fever and then fine but talking funny and suddenly developing a strange habit of spitting.  A lot.  Sigh.  Today we took him to the doctor and they gave him a shot of antibiotic since Brandon has strep they figure Z does too so they might as well treat it. Bless his baby heart.

Anyways, back to my topic.   So they have been off of school the whole week.  I will admit that Brandon and my FIL have been taking care of the majority of childcare as I have been working with the baby I nanny for and doing the food pantry so the majority of child issues have been left to them.  That being said I have watched my house slowly disappear under layer after layer of items.   There's the toy room.  To be honest it was already going under.  I suffer from a horrible case of "what if we need it, someday?" and tend to keep toys for way too long.  I think it stems from Z not playing for such a long time so I kept many different toys around in his line of vision and many times in his path hoping that he would suddenly take them up and begin to play appropriately with them.  (Denial runs strong in my family)  When he actually began to play with toys (whooo hoooo) I was afraid to throw any of them away as his likes would change quickly and he would play with something for a while, not play for a while and then pick it up again.  I was afraid if I got rid of anything and he suddenly wanted it again I would have to either hunt for it or buy it again.  Thus my playroom is in desperate need of divine intervention.  I will also say that the toy room floor was visible today thanks to my amazing husband who cleared a path for our monorail to be set up in there.  Unfortunately the monorail suffered a sneak attack from an unknown assailant and is now in my dining room seeking asylum.

Then there's my kitchen.  The floor looks good but there seems to be a mound of "things" on my island.  It appears there is an episode of Survivor being filmed on my island and no one is wanting to be voted off.  I'm thinking the first casualty is going to be the chocolate covered pomegranate seeds I got for Brandon since I'm going to get them and eat some once I'm doing posting this blog.  Honestly, they never really had a chance.  

I shudder to think of the upstairs hallway as most of the clean laundry almost made it folded to their final resting place but in a freak accident they instead got dumped in the hallway.  Lucky for me about half of them are still folded.  The rest....well, just don't look to closely at my kids clothes the next week or so.

Bathrooms are ok as they are small.  I can actually get them clean and wiped down in a timely manner.  If all else fails I can go open the bathroom door and see that not all is lost.  

So, the question is, it's only Thursday of spring break week and the boys don't go back to school until Monday.  The mess is winning right now but I have not been home and have the fortune of being home the next several days to wage battle on the dust bunnies, dust mites, cobwebs, and all the miscellaneous items that appear on every cleared surface I unearth.

As I wage war in one room knowing the boys are in the previous room I just cleaned undoing everything I have just done I struggle with discouragement.  Why even bother?  It's a losing battle?  I'm so frustrated and no one cares?  I'm going to go eat some more of those chocolate covered pomegranates.  It really is hard sometimes (or all the time) to do the same thing over and over again and not see the benefit for more than a couple of hours, if that.  I have to admit, in this one I don't have any sage advice.  It's just hard.  There's not much worse than picking up the whole playroom, putting the toys all organized into separate bins and piles only to hear a crash 1 hour later and see all that organization in a pile in the middle of the room.  I can scold Z and tell him he's bad and even give him a time out but the problem is that he will do the same thing over and over again because for him the joy is in the mingling of toys, the sensation of piles of toys being spread all over himself.

There are just some things you have to live with.  The boys will go back to school and in two weeks I will have a Friday off where the boys will be in school and I can clean the house without them being home.  In that day I will figure out where my floors went, film the finale of Survivor on my kitchen island, put aside a couple boxes of toys to give away, and hopefully get the clothes not only folded but into drawers.  We all have to have goals. (grin)

Luggage

One quirky thing the boys do is carry around what I call their "luggage".  It started out with J about three or four years ago where he wanted to carry his stuffed animals with him.  At the time he was very excited about Beanie babies and had amassed quite a collection due to various grandparents having collections themselves and lots of beanie babies on sale at garage sales.  He would want to carry all of them (at one point over 100) with him when we went places.  We would encourage him to pick out his favorites and leave the rest home.  He would deliberate long and hard over this decision and mentally keep track of what beanie babies had not gone on outings for a while and which ones were particular favorites.  When we went on longer trips we allowed more of them to go depending on the length of the trip and it amazed me how he would remember which beanie baby was packed in which suitcase (since they took up multiple suitcases).

After Beanie babies Josh graduated to Webkins for a while and then to papercrafts.  We are still currently in papercrafts with Josh.  For anyone who is not familiar with papercrafts they are patterns on paper that you print, cut out, and then tape together to create a 3 dimensional object.  This interest started last summer and has continued through this year.  Currently Josh has hundreds of these objects.  He's even taken to creating his own when he can't find patterns for objects/characters he wants to create.  The good thing for us is that they are much smaller then beanie babies so they all fit into a large reusable grocery bag that he carries with him to school every day and with us wherever we go.  We can occasionally get him to just take a few papercrafts with him places but most of the time where Josh goes the bag goes.

I'm not sure how it got started but about a month or two ago Zach started noticing Josh's bag and began to carry his own.  Here's were it's been interesting.  Zach loves Baby Einstein DVDs, CDs, puppets, and books.  So it started out with him carrying around a few books in a disposable grocery bag just like his brother.  We thought it was cute that he wanted to be like his brother.  What were we thinking?  He quickly found that carrying around a bag of his things was something he favored and so he began to add to the bag.  The reusable grocery bag has quickly grown to an extra large reusable grocery bag, and now to a small suitcase.  I'm pretty sure we are going to be needing a large suitcase by next month and Zach continues to add his favorite things to this suitcase.  He carries it around the house and will even take it to bed with him.  I usually to in after he's asleep and move it from the top of his bed to the floor.

So, there are my kids comfort items.  Kinda like the blankies of their toddler years but bigger.  I wonder sometimes if I'm creating a monster or if I'm helping them to feel comforted.  For now we are managing the load and working on limits, mostly because many times I carry these items after the kids get tired of lugging them around.

It made me think of what luggage I carry around.  I carry extra weight which is not healthy but has been around so long I've gotten used to it.  I carry extra items in the house that I really don't use but have never gotten around to going through because they have been there so long.  If I really think about it there's a lot of luggage I carry around.

I think my heaviest luggage is the weight of responsibility I feel concerning decisions I make about the boys.  It seems like every decision has so much riding on it from how to I discipline (or don't discipline) to which medications do we use for them.  I know this is every parent's issue but I can't help but wonder if it's not a bit harder for parent's of children with special needs especially those that have so many different treatment approaches and no real understanding of what causes the issues.  The bible says God's yoke is easy and his burden is light and to cast your cares up on Him.  I think for me that is something I have to work on.  I'm getting tired of carrying this luggage and I need a break.  Does this mean that I'm going to not make any decisions and just "check out"?  No.  I think what it means is that I give myself permission to make the best decision I can and be ok with that.  I give myself permission to relax and know that my kids love me, love others, and are learning to be good people and that's enough.

DNS takes on a whole new meaning

I've been away from the blog for a few days due to some internet issues.  We were having DNS issues.  The amazing thing is that I didn't even realize we had a DNS until suddenly it was giving us problems.  Apparently AT&T is having issues and this was our week for them.  Whoo Hoo.

What I was not ready for was J's reaction to this issue.  Now, J loves to be on the computer.  He loves to create video games, play video games that other people have created, and watch clips of some of his favorite shows.  The first day or so of no internet he came up with different ideas of things he could do on the computer but by day three he began to hit the wall.  There were just too many things he needed to get access to that required the internet.  I kept discovering him trying to discover a way to fix the DNS issue.  He tried shutting off the computer, then he tried opening another window in the browser.  He tried various other ways to access the internet (ipad, laptop, cell phone) but they either didn't work or didn't do what he wanted them to do.  It was all a lesson in futility.  I finally sat him down and tried to explain what the DNS was and how it was not something that we had any control over.  We just had to wait for AT&T to fix the problem and there was nothing we could do to make it work any faster.   We had a moment when he discovered that we could get internet access from the church in our backyard and I had to stop him from trying to carry the desktop computer into the backyard.

Whew, things are finally back to normal and the internet is restored but it really got me thinking.  There was not a single thing we could do about the fact that we had no internet.  We couldn't pretend it was working, we couldn't make our own internet, we also couldn't fall apart.  Life went on and we just had to make adjustments.  I had to wait to post on my blog, J had to be patient, Brandon had to go to work to do internet related work, and we all had to just be patient and creative in finding ways to do things we were used to using the internet to do.  I realized that this is pretty much what has happened to us since we got the boys diagnosis of Autism.  We've could have pretended it wasn't autism and everything was normal but that would have been silly, we couldn't fix them since no one knows how to fix Autism, we could (and for a while did) fall apart but there wasn't much use in that.  What we had to do was get creative and be patient and that has pretty much been every day since then.

So, why would a faithful God allow the internet to go down for several days when it's such a central part of our life?  Well, it taught us that there are other ways to pass our time and allowed us to learn some creativity and flexibility.

Balloons in a Tree.

Today was Z's birthday party.  His actual birthday was in February but it's taken us this long to get our act together and plan a birthday party for him.  We decided to have jumping at a nearby trampoline place and then cake and ice cream at our place afterwards.  We figured this would be a way to accommodate everyone.  Z gets what he enjoys and we aren't up until all hours of the night right before church on Sunday.

Well, as usual things start to go bad the day before.  I wasn't able to get as much done as I wanted to on Friday and found myself very behind Saturday morning.  I still had to get decorations, take Z in for a vision and hearing screening for school, clean the house, set out the party decorations and put together party favors plus pick up the cupcakes by noon.  I was off like a crazy person and picked up several things and did several errands, including getting 10 mylar balloons for Z and the other kids at the party.  I raced back to the house to start getting the house cleaned up and putting the decorations up with only an hour and a half before the party started.  Way too close for comfort and the tempers were starting to rise.

I immediately started putting up decorations keeping it simple since Z likes to pull things down but I did manage to keep J from panic as I blew up a package of balloons for the floor.  Brandon and I had J doing several odd jobs around the house (taking clothes to his room, putting dirty clothes in the laundry room, etc) while we ran around doing the major sorting and straightening.  Suddenly J starts to melt down.  He's totally upset that we are working him to death and is telling us that we are going to begin to draw blood.  Now, here's where my mother of the year award begins to tremble.  Instead of realizing that he is obviously over stimulated and ready for a break and realizing that it is very hot in the house and everyone is getting a bit short tempered I launch into "teach the kid a lesson" mode and begin to explain to J how he is really not being overworked and I am not expecting more from him than any other parent would expect from their child when they are expecting company.  After a minor meltdown and quite a few tears order is restored and we move on.

Just then I hear a yell from Brandon and he goes tearing out of the house.  Z has taken all 10 of the balloons we got that morning for the party and has ran to the backyard.  Brandon tries to catch him but before he can get to him they are all floating gracefully into the tree next to our house and are artfully snagged on the telephone wire attaching our home to the local telephone company.  My heart sank.  Z was so thrilled to see his balloons floating there above our backyard., Brandon, not so much.  Brandon looked at me, "We are never getting those balloons again."  My heart sank, one more normal, everyday thing that everyone else takes for granted taken away from us.  My eyes welled up with tears and I mourned.  It was silly, really, they were just balloons, but for me it was one more thing we could not do.  Dang it!

As we came inside J began to get upset again, "We're such a stupid family," he said,"I'm going to run away." Great, I thought, just what we need, more drama.  I chose to ignore him and said something dismissive about how much I would miss him if he ran away and that every family is stupid at times.  I even gave examples.  About this time I realized we were late picking up the cupcakes.  I sent Brandon out to get them and quickly tried to finish up the last few things I had to get done, one of which was dressing Z.  I asked J to run upstairs and bring down a shirt from a specific area of Z's bedroom for him to wear.  I realize, looking back, that I was asking for trouble.  We were all hot, tired, out of sorts, short tempered, and barking orders.  When J came down he had two long sleeve shirts and a shirt of Brandon's.  I was so frustrated.  I asked him how he thought this was a good idea to go to a jumping place on a hot afternoon in long sleeves?  I ran upstairs to get another, more appropriate shirt for Z as I heard J in the downstairs saying how we really were a stupid family and how he was the most stupid and how he was going to run away.  At this point I was considering it myself.

After retrieving a shirt for Z I came downstairs one again and realized that J was gone.  Seriously, that fast, he was gone.  I immediately called Brandon and asked how far away he was, luckily he was only two blocks away.  I told him J had run away and to be on the lookout.  I then grabbed Z, got him dressed quickly and ran outside to look for J.  As I rounded the front of the church we live next to I could hear J yelling but could not see him I continued to yell his name and after a while realized he was coming around the opposite corner to where I was with Brandon and our neighbor keeping a cautious distance.  J was screaming how much he wanted to run away.  I realized that Brandon had the situation mostly in control and that I needed to see if there was a way to give J an out so I took Z back inside and called my mother-in-law to explain why we were going to be late to the gathering we had invited everyone to.  God bless her, she is a saint.  She offered to handle everything at the jumping place while we handled J.  I then grabbed three ice pops.  When J gets so upset he gets over heated and over wrought.  What I have found is that if I can offer coolness and a mom's hug after the storm has passed sometimes it helps.

When I got back to where he was when I left Brandon had him in a hold as he was still yelling, although not as loud.  I came over and offered J a hug and an ice pop and as I thought, he accepted them both.  We sat for a while while Brandon took care of the car he had left running around the corner and made sure Z was ok.  We were able to get into the car and make it to the party only about 20 minutes late.  By all appearances we looked calm and happy.  Little did anyone know that I had manged to lose my mother of the year award as well as almost lose my son in the same day.  Not to mention the balloons.

So, why would a faithful God allow all this to happen?  Well I don't blame Him.  In all honesty I really think I made some pretty poor choices.  I left way too much to do the morning of a party and then projected the stress to get it done not only on my spouse but my children as well.  If I had better time management things would not have been as chaotic.  I also think that there were several times along the morning where I could have stopped and realized that J was melting down slowly, bit by bit, and I didn't clue into it until it was too late.  I needed to make sure that he was ok before my floor was swept, not the other way around.

All in all it turned out ok.  I learned something and we ended up having a nice time with family and Z had a good birthday party.  I'm just really glad birthday's only come once a year.

Yes, that's my son in your sink.

So today I got word from the nurse at my younger son's school that he was pulling on his ear and saying "ow".  For me this is a huge improvement as prior to about 18mo ago the only way I knew he was sick was when he spiked a fever.  The kid would be running around climbing trees, playing in the backyard, eating normally and then suddenly I would discover he had a raging fever and have to quickly rush him to the doctor.  This is what's fun about a child who is non-verbal.  Remember those baby days when they couldn't tell you what was wrong but you knew they weren't feeling well.  This is very similar except they weren't acting sick.  I always felt like the mom of the year as I sat in the Dr's office and discovered that my son had not one, but TWO raging ear infections.

So today off we went to the Dr grateful that, for once, this had happened on Monday and not Friday afternoon.    Z immediately began to wash his hands in the sink (ie play with water).  I figured I had a good 5 minutes or so before I had to interest him in something else so I wouldn't look like I was wasting water.  Just then the Dr came in, not our regular Dr but one of his associates who had an opening (poor guy) and caught us red (wet) handed.  I quickly shut off the water and dried off Z's hands.  The Dr spoke to me about how long and all those types of things while I tried to be a physical barrier between Z and the coveted sink.  Just the the Dr said,  "ok let's look at those ears".  Boy that kid moves fast.  Right to the opposite side of the room and huddled on the floor.  Here's where I once again tried to go for the mother of year award and failed miserably.   I thought in my head....ok, lets reason with him. "Z, would you like some McDonalds?  First Dr then McDonalds."  I felt like this would show the Dr that I was in control of my son and that I could use First/Then techniques to get amazing things accomplished, like looking in ears.  Therein was my first mistake.  The thought that I could reason with Z.  He knew exactly where we were.  Last time we were there he had an earache and they looked in his ear and then afterwards he got a shot.  He was no dummy, there was not a chance he was going to let us see his ears with simple reasoning.  So the little Turkey sat on that floor looked up at me and grinned.  I knew right then and there I was in trouble.  Where to go next. Brute force?  I knew from past experience that brute force was definitely on his side as opposed to mine in spite of the fact that I am twice his size.  Plus I wanted to make sure to not cause the Dr to entertain the idea of calling Child Protective Services.

So I looked helplessly at the Dr as asked if he wanted to call in reinforcements.  He looked a bit taken aback but seemed to cover it quickly.  I took hold of Z as hard as I could and wrapped my leg around his legs.  My prayer was that on one (me) would end up with a bloody lip or concussion.  The Dr, swooped in and quickly looked at the first ear and declared it clear, no infection.  I knew we were only half way there so I shifted a bit and moved Z so the Dr would have access to his other ear.  Once again he swooped in and declared the ear clear.  At that moment I had two remarkably conflicting emotions.  Relief that my sweet, gentle, baby boy was not in pain and unable to express it, and absolute frustration that we had gone through all of this trauma for nothing.  Seriously, at that point I wanted a sucker and to go home.  The Dr mumbled something about how unusual it was for children Z's age to have ear infections (now you mention it) and that it looks like he may have a stuffy nose so perhaps it's the beginning of a cold.  So we grab our stuff, Z is out the door and half way down the hall by the time I'm through the room doorway he's so eager to get out of this place.  We blessedly get through the checkout area quickly with only a half dozen dings of the bell they have sitting in the window to make them aware you are there and then head out the door.

As I reflected on this trip and spent a few minutes feeling sorry for myself that no one understands what I go through and how hard I have it and how frustrating this all was I began to think of this blog.  Why would a faithful God?  Why would a faithful God drag Z and I out for no reason whatsoever to make spectacles of ourselves and then look silly.

I thought for a moment and then began to think of the alternative.  Would I have rather been told that there was a problem?  What if I had been told that not only was there a problem with is ear but it looks like there's something else going on, let's order some more tests?  What if those tests showed something very serious and life altering?  I realized that I was put out that we had "wasted" a whole afternoon (90 minutes) for nothing more than a cold when there were parents all over the world that would have raced to trade places with me and only have gotten a "cold" diagnosis for their child.  I realized that my faithful God protected us, once again, from more sadness and suffering than we could bear.  I was so thankful for this cold and that I was able to take Z home (after a trip through the McDonald's drive-thru) and there was nothing more serious.

It doesn't always happen this way, but today, I am thankful that it did.

Why am I doing this?

As a pastor's wife and mom to two children with Autism I have heard so many people ask, "Why would a faithful...loving...caring...compassionate...God allow _________?  For so many people this is a cry that is so deep.  It's a cry from a broken bleeding heart of pain, sadness, anger, frustration, and helplessness.  We want to know who's in charge and who's to blame so we can get them to make it right, much in the same way that we have the person who runs into the back of our car fix the damage they caused.  The problem is that, in the case of our Loving Heavenly Father, He didn't cause anything.  These things happen because we live in a fallen world.  That is the reality.  Is it a nice reality?  NOPE.  Not even remotely.  As a matter of fact it's pretty darn depressing.  Bad stuff happens.  You can count on it.  Some of it inconvenient some of it life altering.  Sounds pretty hopeless.  Here's where the hope comes from.  Our Faithful, Loving, Caring, Compassionate, God knew we needed hope and he is the God of Hope.   He gave us his Son to over come death and sin at the cross, giving us Eternal hope and Salvation from the hopelessness that is this world.  Here's the kicker, we still have to live here on Earth, in a fallen and sinful world of sickness, death, disease, and disability, however, he has overcome this world.  Our eyes are on Eternity. Our time here on Earth is but a moment compared to Eternity in Heaven with our Lord.  


So what, you say.  There are whole books written about this.  All of them written by people way more well trained and spiritually mature than I am.  Well, that is true but this blog is the beginning of a path for me.  A path of looking at every day with my two children and my life as a whole and asking the question, "Why would a Faithful God allow______".  I want to try to look at the things our family goes through daily through the eyes of a faithful, loving, and compassionate God and see why he would "allow" it to happen.