A Fish Called Spongebob

In the days leading up to Memorial Day weekend I felt almost as if I couldn't breathe.  Three day weekend...routines off schedule...and dysfunction...no thanks!  I literally dread holidays or extended weekends where two of my children on the spectrum are going to be turned inside out.  While most people are packing their suitcases, booking hotel rooms, lounging on the beach, or riding some waves, we are stuck at home on a rigid routine. 

This weekend was no differently planned.  I tried to focus on how I could keep things normal and structured.  Now I wasn't going to let a beautiful; warm North Carolina weekend go by without some water play so we did hang out by our backyard pool most of the weekend and I immediately began to see that the pool was the answer to most of my routine issues.  I kept all of our boys in the pool most the weekend making sure to break for lunch and for my youngest son's nap at the appropriate times and somehow managed to keep everyone on course.  As long as Logan is splashing in water he doesn't even think about his Yo Gabba Gabba fixation.  In fact...we only had to look at Yo Gabba Gabba first thing in the morning before breakfast and right after dinner before bedtime.  It was nice to get a break from the insanity for once. 

Logan has been hanging out in his baby pool for the last couple of weeks and he loves it.  He could sit there and splash for hours if we would let him.  This weekend we decided to try in him the big pool and I was nervous that it may overwhelm him and might ruin his want to ever get back in the water again.  But just like with everything else in the world of autism...we have to try.  I slowly eased him into the water with me and began to walk around the pool with him slowly letting him get used to the feel of it all.  He was quiet to start with and then once he realized he was fine he began to squeal and laugh.  Then he began to kick his feet and splash.  After about 20-30 minutes he was trying to break out of my arms and wanted to swim and paddle on his own.  He wanted nothing to do with the pool floats.  This child truly wanted to swim and wanted no help from me or his dad.

It was amazing to me and was definitely wonderful to see him so happy and excited about something new.   It also struck a chord of fear in me.  If he is this fearless how will I keep him out of the pool when we aren't looking?  I could tell immediately that we are going to have problems.  After taking him out of the pool he layed down in the grass and began to convulse.  Screaming, headbanging, and legs thrashing everytime we had to pull him off the bottom rung of the ladder.  It was now crystal clear to me that the pool ladder will have to removed after every swim and that we are going to have to put latches on both the front and back doors to prevent Logan from being able to get outside on his own.  We received a Big Red Safety Box from the National Autism Association that included two door chimes.  We really didn't think we would need them anytime soon, but after seeing our son's new facination with water it looks like those chimes are going to be needed sooner than later. 

But this is alright.  We knew there would be things like this that we would encounter along the road.  We new there would be things he would be overly interested in just like the things that he has aversions for.  I am not so scared for his safety that I will deny him the enjoyment of the swimming pool.  This child needs happiness and pleasure in his world of torment and confusion.  I will not deny him that.  I will just continue to be the overly-cautious, proactive mother that I have been and I will continue to second-guess his every move.  It is worth it to see one second of pure joy on his little face.

Color Him Happy

I know children on the spectrum are overly obsessive.  I get that.  Everyday I am watching my two year old become more and more fixated on certain objects, videos, and activities.  One part of me is excited to see him interested in something...more like anything.  Then there is the part of me that is slightly frightened after eight hours of Yo Gabba Gabba Dancy Dance Bunch on auto-repeat.

These new fixations have become the nucleus of our household existence.  How can I get Logan to take a nap without having a meltdown when he has to leave his video?  I have to go to the grocery store...don't forget the Yo Gabba Gabba video for the car!  If I have to get him out of the car to go into a store he is now not only melting down because he doesn't like being in the store, but he is also melting down because he had to leave his video.  It is like adding insult to injury.  Not only is he completely enthralled with the Yo Gabba Gabba video, but he is now taken up an unusually focused interest in coloring.  He doesn't want to put the crayons down to play, read, or eat.  He is constantly walking around either saying "Color-color" or "Gabba Gabba".  He doesn't want to sit at the table anymore for meals because that means he has to leave his video.  He sits through an entire meal while screaming "Gabba Gabba" and throwing his food on the floor.  My husband and I can't even watch the evening news.  The older kids are limited to watching television in their rooms because Logan is dominating the television in our living room.

To make matters worse I made a huge mistake last week and calmed a meltdown in a store by (out of sheer desperation) saying "Do you want Mommy to buy you some "color-colors"?  The screaming ceased and he began to repeat "color-colors" for the next 10 minutes as I wheeled around looking for coloring books and crayons.  I actually took him out of the seat of the shopping cart and placed him in the back of the cart and opened up the crayons right in the middle of the store and let him go to town.  There he was on his knees coloring furiously in the bottom of a shopping cart, babbling "color-color" repeatedly and for one single moment there was peace. 

Now I know what you are thinking.  You are thinking that I turned my son's obession into something positive and I know you are thinking this because I was thinking it myself.  I was actually pretty smug when I rolled up to the cash register and paid for everything free of screaming and head-banging.  But, (there is always a but) now I have created a monster.  I am now the proud mother of the "Color-Color" King.  Everytime I walk into a store he begins to scream at the top of his lungs "Color-color!!!!!!" over and over again.  He figured out instantly that the store has crayons and he must have them!  I tried taking the crayons I had already bought him on the next shopping trip, but that wasn't good enough.  He has to have more "color-colors"...better "color-colors"...the world will not be his until he has claimed all the crayons from all over the globe!!!!   I have three brand new packs of crayons that haven't even been opened just to prevent a meltdown.  Now you know I am one sick puppy for giving into this madness...but I am just plain desperate for peace and serenity on an outing.  I know I am being selfish for giving into the obsessions but they can come in handy in times like shopping or times that I have four tons of laundry piled up on the sofa.  It is amazing how many household chores I can get done now while someone is fixated in front of the television.  The challenge of breaking these routines is so difficult that I am giving into them and I know these things need to be limited but I seriously don't know how to do this without my son erupting like Mt. Saint Helens. 

I discussed the obsessions with my son's developmental pediatrician and he firmly told me to break the routines and to take the video away cold turkey.  I suddenly had a mental picture of me throwing the video in the trash can and watching my son spontaneously combusting.  Then I thought about me having to deal with the fall out from taking the video away cold turkey and imagined my son's pediatrician kicked back at home watching Sports Center on ESPN, eating a turkey sandwich in his underwear.  It is easy for these professionals to render what should and shouldn't be when they don't have to come home with you and help.  He can point fingers and then get off work and have a drink with a friend or go hit some golf balls.  Yes, I know professionals are educated in their field and know what they are talking about but they don't have to live it.  On our last visit I was also scolded because I was allowing Logan to eat gummy bears in the waiting room.  Gummy bears are the magical fruit.  They calm meltdowns.  They improve attention spans.  They create patience in a child that ordinarily doesn't have any.  My son's doctor told me that they were full of sugar and that only adds to his hyperness and that I should know better.  I told him when he stopped making me wait for 45 minutes to an hour to be seen then I will get rid of the gummy bears.  He didn't say anything else to me about that, but I digress.

So here I sit, typing this blog listening to five felt-like alien-mutants singing about social skills with their friend, a strange man in an orange jumpsuit with a toilet-seat cover for a hat, and I wonder am I doing my son an injustice by allowing these behaviors or am I making his life a little happier.  He is clearly happy as a clam and it is making my life easier, as well.  Am I just being selfish and trying to justify this behavior because it is appeasing my child and myself?  The verdict is still out.  I know at some point these obsessions are going to have to be broken but right now it is just a lot easier to give in. 

"It Can't Get Any Worse"

Whenever you say the words "It can't get worse" it usually does.  Last week was no exception.  It is amazing how many castastrophes went down in the course of a few short days.  It all started with trying to get my car inspected.  My license plate tags were about to expire so I had to take my car in for an inspection first before I could renew my tags.  I arranged to take my two year old to Play Date (a drop in child care facility that only charges by the hour) and after dropping him off headed across the street to a local oil changing center.  After waiting about an hour and a half they told me my car was ready and that it had passed inspection.  Sweet!  No bumps in the road today.  Smooth sailing it seemed.  I picked up Spongebob from Play Date and he was having a great time playing and running around.  We headed to lunch and then home. 

I had noticed earlier the day before a strange and foul smelling odor coming from what I thought was my toddler's breath.  All the possibilities flooded my mind.  Strep?  Decaying tooth?  Being the worrier I am I asked his developmental pediatrician at his follow-up appointment the morning of my inspection what he made of the odor.  After fighting off a wild animal and not getting a very good look in his mouth, he told me that he thought it was just drainage and it would run its course.  I had no other reason not to believe that and so I did.  After 24 hours the odor was now pungent and I knew of course that it couldn't be drainage.  We were sitting at my older son's baseball game and I noticed the odor was so prevalent that I could smell my son playing in the grass a few feet from me.  I was embarrassed that the other mother's could smell it also.

As the evening progressed I noticed the gnats and mosquitos were making their way into the evening.  I began to notice that the gnats were pitching in groups around my son's nostril.  They were literally covering the end of his nose.  I looked around and noticed no one else had an army of gnats gathering on their face and I knew right then and there that something was not right.

When my son woke up the next morning the smell greeted me as soon as I entered his room and I noticed his left cheek was swollen and red.  Back to the pediatrician's office we went.  I was worried that we would have to see a different physician because we were being worked in but thank goodness his regular pediatrician was the attending on call.  She walked in and inquired as to why we were there and she immediately noted the smell.  I told her about the gnat incident and my concerns that something may be inside of his nose and she agreed.  After holding him down and looking up both nostrils with a light she said she definitely thought something was up there.  This resulted in an immediate emergency referral to the ENT office.  I arranged to have my in-laws pick up my older boys from school and headed over to ENT.

It is important to mention that for someone unknown reason my son is extremely partial to having meltdowns in this particular office.  I am not sure if it is the length of time he is required to wait to see the ENT or if it is the closed-off play area they have for children, but everytime we have been in this office over the last year he has had a hellatious meltdown.  This day was no exception.  His ENT specialist had indicated that my child shouldn't wait when he has appointments and immediately be put into a room, but somehow they receptionist missed that tidbit and told us to have a seat.  I don't like to use Autism as an excuse everywhere we go so I thought we should at least try to see how things went without asking for special treatment.  Not so good, I tell you.  Not so good.

He heads right over to the play area where there is a little girl a couple years older than him.  She may have been four or five.  You could tell she was a bossy, domineering type of child.  The type that would set my son off.  I kept trying to get my son to sit with me but that was completely futile.  He kept heading back into the play area.  Every toy my son would pick up this other little girl would snatch from him and I could see him getting visibly upset.  Hmmm...looks like for once my son has better social skills than another NT child.  Imagine that, I thought.  This give and take went on for a while and then my son got really upset and somehow flipped off the back of a small wooden chair and I heard his head crack against the wooden molding near the floor.  Piercing screams now filled the waiting room.  I picked him up and he began to butt his head over and over in my chest and continued to scream.  Everyone was staring (what's new).  I walked with him in my arms up to the reception desk and said very politely, "Excuse me, but my son has autism and his doctor indicated in his chart that we should not wait here in the waiting room because he gets overstimulated.  Is there any way that he could be put into a room".  She rolled her eyes and took another big smack off of her gigantic mound of chewing gum and said, "Shug, we can't just let you jump ahead of all the other patient's just because your son has a problem".  I responded, "I am not trying to jump ahead of anyone I am trying to control my child from having a complete meltdown and your help would be greatly appreciated."  Somehow, after about ten deep huffs and a few more eyerolls my request was accomodated.

But it was too late.  He was in full meltdown mode at this point.  As soon as the door shut behind us in the exam room his meltdown when from minor to major.  He ran around the room screaming and then began slamming his head against the wall repeatedly.  I grabbed him and tried to hold him tightly but he just continued to fight me.  I put him down and he ran over to the exam chair and went to slam his head into it but somehow missed his mark and busted his mouth on the arm of the chair so hard that he split his lip open.  Blood spewed everywhere.  At this point I began to freak.  Holy Hell he is a bloody mess and the doctor hasn't even come in here.  What am I going to do???  I peaked my head out the door and didn't see anyone so I grabbed my son (still screaming and melting) and we walked down the hall.  I can only imagine what we looked like all covered in blood and him screaming.  I probably looked like "Parent of the Year".  I finally saw a nurse and when I saw her I just busted into tears.  I told her what happened and she ran and got a bag of ice and some cloths.  I just stood there like a blubbering whale while she cleaned him up.  I kept apologizing and she was very nice about the whole incident.  I must have looked like a mental patient.  Sometimes autism catches up with you when you least expect it.  I can see the headlines now..."Strong Warrior Mom Turns Into A Pile Of Mush At Local ENT Office".  Finally, his doctor arrives.  When I think back on his facial expression when he walked in the room and sees me and my son sitting there all covered in blood and I tell him he has a foreign body up his nose, well, I just want to laugh.  He looked super confused and I told him just to ignore all the blood,  that we had a mishap and it was fine now.  He just laughed and proceeded to look up my son's nose.  Yep, he confirmed there was definitely something up there.  After a few numbing drops up the nose out it came...a gigantic wad of paper that had been intricately wrapped around a staple.  Only my child could have come up with something so creative and wanted to preserve it for future reference...where better than in his nostril?  Finally we were out the door.  I got in the car and strapped on my seatbelt and took a huge deep breath.  It can't get any worse, I thought.  Boy, was I wrong.

While we spent all day Thursday in the ENT office I was supposed to be at the DMV getting my tags renewed after getting my inspection done on Wednesday.  That didn't happen so we were in a real pinch.  My tags were scheduled to expire on my car over the weekend on Sunday, so Friday (last Friday the 13th) was my last chance for getting my tags renewed before they expired.  My husband, trying to be a sweetie, offered to take my registration with him to work on Friday to handle this for me since I had been under so much stress already over the past week.  He ended up getting behind and didn't get to take lunch until around 2pm and called me after leaving the DMV.  He didn't know what to say other than he couldn't get my tags because the computer system showed that my car had an out of date inspection.  "Impossible", I screamed through the phone.  I explained to him that I had it done Wednesday and for him to have them run it again...again...no inspection in the system.  I was livid.  I called the oil changing station and told them what happened.  After some investigating it seems as if they did an inspection on someone else's car and I paid for it and was given their inspection paper showing my car had passed and a receipt for my payment but nothing was actually done on my vehicle.  I had to pick the boys up from school by 3pm and knew that there was no way I would be able to get another inspection done and tags renewed by 5pm when the DMV closes.  As pissed off as I have ever been, I hauled ass to the school and picked up the two oldest boys and flew like Speed Racer to the oil changing place.  The guy comes out and apologizes and tells me to wait in the their waiting area and for me to know that there is going to be a wait.  A wait???  Oh, hell no there isn't!!!  See Dude...you messed with the wrong Autism Mom today!!!!  Oh yes you did!!! 

"No, Sir, there isn't going to be a wait.  You see I came here Wednesday and paid for two hours of babysitting services for my son who is autistic and sat here in your waiting area for an hour and a half while you inspected someone else car and I paid for it.  Now you are going to cause me not to be able to get to the DMV by 5pm and my tags are going to expire on Sunday.  Unless you want your waiting room to look like aftermath from Hurricane Katrina (because I can promise that you have never seen devastation until you unleash my son on a stack of magazines and some potted plants) then I suggest you take me right NOW!!!!!  He suddenly had some sort of epiphany and agreed to take my car straight back for inspection.  While inside Logan proceeded to wipe out a whole stand of business cards, tear up two magazines, unplug the drink machine, and type on their computer system...and for the first time ever I didn't even try to stop it.  I was numb and irate.  We left that place in a pile of dust and I think our Governor has now declared it a State of Emergency and they are getting some funding from FEMA to repair the damages, but I am not carrying that on my concscience.  Nope...not worrying about that!

I did manage to get my tags first thing on Monday morning without getting pulled and I did so after learning another valuable lesson in the world of Autism.  Never...never...ever...say it can't get worse...because it always does.  And for the record...Friday the 13th for me was an entire week, but hell, Friday the 13th is just another day in this Life With Spongebob.

Lysol, Magic Erasers, and Tears

Many of us moms raising children on the spectrum have had their fair-share of mishaps, but nothing takes the cake like a child that enjoys the smell, taste, and feel of their own poop. 

I can tolerate the meltdowns.  I can conquer the headbutting.  I can even shake my head when my child, who craves sensory stimulation, sticks his fingers in his spaghetti and meatballs.  But, I cannot get used to the idea that my child's idea of a good time is finger-painting me a mosaic out of turd.

This all started about six weeks ago and it happened with a single isolated episode.  I layed my son down for a nap and when I came back to get him an hour later I thought I had stumbled upon the Apocalypse.   Feces was smeared from the top of his head all the way down inbetween his tiny toes.  He had a Groucho Marx mustache made out of dingleberries.  Even after extensive restoration and steaming and sandblasting I still found poop inside his ear three days later.  It's okay, I told myself.  He is just exploring.  Lots of toddlers check out their diapers at least once in their life.  No biggie!

A couple of weeks later...it happened again.  And then again.  And then again.  Now it had gone from biweekly to Daily!!!!  What went from a random occurrance or two was turning into part of our daily schedule. 

9:00am...speech therapy...10:00am...Occupational Therapy...11:30am...Lunch...12:00pm...Nap...12:15...Art and Personal Expression.   

I felt like the Dunkin Doughnuts guy..."Time to Clean The Pooooop!".  It was becoming a cycle.

Lunch...Nap...Poop...Bath...Clean Crib...Lunch...Nap...Poop...Bath...Clean Crib. 

I was actually beginning to taste the Lysol.  I am not sure how much exposure to Lysol is appropriate.  After three straight days of cleaning up stinky we sat down to eat dinner and my husband asked how is the chicken and I told him is tasted like "fresh citrus".  I had also gone through an entire box of Magic Erasers.  You know, the little square block of a sponge that will usually take the grease out of a biscuit.  Yeah...somewhere on the box it should read...will erase your regrets, memory, bank account, but does not erase SHIT.

The final straw finally came when I went into my sons room and found him, yet again, stark naked and covered in poop. I felt the tears begin to pour down my face.  I have been working with my son on expressing emotions and he immediately shouted "Sad!!!" when he saw me crying.  I said, "Yes, Mommy is Sad and Mad!" very dramatically.  He then started laughing and smiling just like he always does when he doesn't recognize that I am not pleased with him.  He then began to walk around the crib and say "Round and Round" and clap for himself.  I always clap for him when he tries to sing wheels on the bus...but this time I did not clap.  I just continued to scrub the poop off the crib bars.  He then tried to touch my face with his little brown fingers.  Just as I tried to step away from him I felt my bare foot squish right down into a pile of poop.  "That's It!!!!", I shouted.  I can not take this anymore.

Later, after a bath and more cleaning, I went online and searched through several websites and found http://www.ikidsfashions.com/ and they have the most wonderful one piece jumpsuits that zip up the back.  I ordered three and anxiously awaited their arrival.  They arrived quickly and I was so impressed with the quality of the suits and crossed my fingers and said a short prayer and then dressed my son in the Wonder Jumper for bedtime.  He immediately began pulling on it trying to figure out where the entrance and exit was and when he could find none he began to scream and throw a ginormous fit.  I was unmoved by his anger and after about ten minutes all was quiet.  I came in to get him the next morning and the jumpsuit was intact and better still...there was no poop!  As soon as he saw me he pulled on the jumpsuit and said very emphatically..."Mad!!!".  Oh well...scratch your butt, little man, and get glad!!!

I would like to report that I have now retired the Lysol, Magic Erasers, and the tears and replaced them with the Wonder Jumper!  We are on day two of success and I pray our days of brown expression are over!

"Simply Mommy"

　
This Mother’s Day I am going to celebrate being a mother to my children. I am going to bask in the glow of their smiles and the warmth of their touch. I am going to forget about the everyday chaos that is autism.

I am going to be the mother that bakes cookies and not the mother that hauls children to therapy appointments. I am going to be the mother that celebrates my children’s lives and not their milestones. I am going to be the mother that plays board games instead of charting routines. This Mother’s Day I am just going to be “Mom”.

I am the mother of four boys and the oldest is twelve with Asperger’s Syndrome and the youngest is two with classic autism. I don’t get the luxury of ever just being “Mom”. You see, most mothers celebrate motherhood and raising their children everyday. But in the life of an autism mom we don’t have time to stop and cherish the simple things, for the simple things are lost. They are lost like the voices of our children and their gazes that never meet our own. Mothers raising children with autism are constantly planning and weaving in and out of routines and meltdowns…dodging the next obstacle or challenge.
Mother’s raising children on the spectrum aren’t taking children to play dates, baseball games, dance classes, or birthday parties. No, we are different creatures, us autism moms. We are blowing bubbles, using deep pressure therapy, singing, motivating, encouraging, soothing…and there are no breaks.

There isn’t a “Mommy’s Night Out” for us mothers. We don’t leave our children for a simple dinner date. We don’t trust a babysitter to watch the kids for an hour. We also never rest, even when we sleep. We lie down at night and pray that tomorrow will be a better day for our babies and we wake up the next morning only to face the same struggles that we endured the day before. Again, there is no time to cherish the little things.

So this Mother’s Day I am going to celebrate being a mother to my children. That’s it. Just being a mother. I don’t need flowers, or a bracelet, or lunch at a fancy restaurant. I just want to be “Mommy”. I just want to watch my children laugh and play. I just want to soak them up for one day. I just want to take it all in…all the things I don‘t get to enjoy because autism controls our life. The things most people take for granted are the gifts that I will treasure this Mother’s Day.