Budding Artist

It’s a given, no parent likes to see their child struggle, really struggle with something.  That is one of the hardest things to swallow about autism.  So many things are a tremendous struggle for the Roc.  Little things, simple things that other parents take for granted.  Opening baggies, zipping zippers, screwing and unscrewing caps, getting shoes and socks on, brushing teeth, cutting with a scissors, and writing are just some of the things the Roc struggles with in regards to fine motor skills.  In the past many of these things would immediately frustrate him and he would SCREAM and throw a raging fit.  As he has grown, so has his patience, (a teeny tiny amount, but I have to acknowledge it) and his verbal skills.  Now, while many of these things still frustrate him, he tries just a little bit longer (sometimes we even get “No, I wanna do it!”) or he asks for help (many times in a screech, but I’ll take it!)

As his mother it has been so hard to watch him struggle.  So hard not to compare him to my friend’s children who do almost everything with ease.  So hard not to want to change things somehow for him.  Help.  Fix it.  Do something.

Why does everything have to be so hard for my baby?

But that is what makes the little things that much sweeter.

I remember when I first gave the Roc a marker and a sheet of paper.  He concentrated hard, fisted that marker, and proceeded to fill the whole page with compact little squiggles.  I bought a couple sketch books and he alternated between filling the pages with dots, lines, the letter H, (for some reason only known to him) or those original scribbles.  I found it fascinating that he had the focus to continue page after page.  For awhile I saved that first paper, proud of the perseverance it took to evenly space out those squiggles.  Then the word autism pushed it’s way into our house, parked itself on my chest, and I saw those repetitive squiggles differently.  Repetition and perseveration.  Hallmark signs.  Desperately I tried to get the Roc to draw something different in his sketch book and to reverse his grip on that marker.  I pushed too hard and pushed him away from wanting to write or draw with me.  I had to take a step back.

He started preschool and at home I let him return to filling up his sketch books with squiggles, dots, lines, and the letter H.  I wondered when he would draw something, anything other than those repetitive images.  My mother (the former teacher) sent me a list of fine motor activities and the school OT sent home some suggestions as well.  I worked on them with him when he would allow, trying not to push him too far into frustration.

Over time I saw the slips coming home from the preschool OT start to change and rejoiced for the progress.

March 4, 2008

March 30, 2009

Eventually he started to reverse his grip at home and stopped fisting the marker.  Now in full day kindergarten he is required to do much more writing and has “homework” each week, one day of which is writing the sight words they are learning.  He still likes to scribble all over a page if you let him so I usually print the words lightly in pencil and give him a marker to trace over them with.

Earlier this week we were working on his “homework” and I asked him if he wanted to draw when he was done.  He was really enjoying the little marker his OT sent home (a crayola pip-squeak, perfect for those kids who want to hold the writing utensil at the top – can’t do that with a tiny marker!) and I asked him if he could draw a house.  I fully expected him to scribble all over the page but instead he looked at me, looked down at the page, and then drew this:

Holy smokes!!  I didn’t know he could do that!  He went on to draw two more but the first one is the one I saved and slapped up on the refrigerator.

Even if no one else really grasps the amount of time, repetition, and literally hours of work this kid has put in to be able to draw that little house, I know.  I get it.  And man am I proud of that little wonky house and the kid who drew it!

Hospital + Halloween

Last Thursday I felt quite recovered from my Mommy Meltdown that I wrote about it while the Roc was at school.  He had been home from school for a week and I was soooo very ready for him to go back and was relishing the quiet house, only the sloshing washer and cat growls could be heard as I sat at my desk writing about my Monday implosion.  It was to be my last bit of peace for at least 24 hours.

Earlier that morning the Roc’s breathing was a little tight, which didn’t surprise me because he had been fighting a cough and had needed help over the weekend to get his breathing under control, so I gave him a breathing treatment and sent him on his way eager to be alone.  I got a lot done that day, though I don’t remember what, (besides that blog post) and was slightly dismayed when the school nurse called me late in the afternoon.  She was only calling to inform me that the Roc had been coughing a lot in class so he was sent to her for another breathing treatment.  No big deal I thought.  He arrived home not long after and my heart dropped a bit to hear him wheezing.  I gave him another breathing treatment and when that did not alleviate his discomfort we headed over to Urgent Care.

Because we had been to Urgent Care the week before and the Roc had been put on steroids and breathing treatments the doctor took some x-rays of his chest (so not fun trying to get him to stand still for an x-ray!) which came back with clear lungs.  They did another breathing treatment but his oxygen level was still in the low 90s and she said she wasn’t comfortable with just giving him more steroids and sending us on our way.  She said we should head up to the Emergency Room at the Children’s Hospital.  A knot formed in my stomach as I loaded the Roc in the car.

We met GC at home and drove up to the hospital with the Roc talking and coughing the whole way.  He just LOVES to drive places in the dark and see all the lights and he wouldn’t stop talking!  The ER was crowded with people wearing masks and parents jiggling their crying children as I rushed up to the desk.  The one and only good thing about breathing issues is that no one messes around.  We were brought back to triage immediately and from there we had to wait less than 10 minutes (which felt like a lifetime) for them to find a bed for the Roc.  He was going downhill fast and was coughing and begging for help while we waited for them to find a place for him.  I stood at the desk holding the Roc and practically bored holes in the intake nurses head while he cried and pleaded “I need help” and then he threw up all over me and cried even harder.  Ack!

After we were ushered into a bay the Roc was put on oxygen and his eyes immediately rolled back in his head and he fell asleep.  His oxygen level was 88% when they first hooked him up but quickly went up to 95% on the O2.  We stayed there for a few hours while they gave him more oxygen and did back to back breathing treatments with another medicine.  He wasn’t able to maintain a good oxygen level and his breathing was so labored that he was admitted and moved to the second floor to start continuous albuterol treatment through the night.

By now it was around midnight and he was amped up on all those medications.  When the receiving team on the second floor got him into his bed he was just a wild thing.  He wouldn’t stop laughing and trying to get out of the bed to run around.  I had to climb in bed and hold him while they did their examination and hooked him up to the breathing apparatus.  I tried to settle him and eventually succeeded only for the doctor to wake him up!  GC left to get us some food and I got the Roc to fall back asleep.  We ate and then GC drove home and I spent the rest of the night at the foot of the Roc’s little hospital bed putting his mask back on and re-hooking the monitor to his thumb every 3-14 minutes (you bet I timed it, I couldn’t believe that I would literally close my eyes and then immediately have to open them to fight with him about the mask or monitor!)  Eventually around 5 am he slept for longer periods and I got about 45 minutes of sleep.

On Friday morning they were able to wean him off the continuous treatment and we worked toward getting him to go 4 hours without a treatment so we could take him home.  He was able to participate in the hospital trick-or-treating that morning and they even brought a little batman costume for him to wear, which he didn’t!  He was sleep deprived and easily overwhelmed so we only went to a few stations to gather Halloween trinkets before he said he was ready to go back to his room.  He took a little nap in the afternoon (so you know he was sleep deprived) and eventually he was released to go home around 5 pm.

It was a totally exhausting 24 hours.  For me and for the Roc (and GC too, but he wasn’t at the hospital overnight so our experiences there are a little different!)  One good thing that came out of it was that we didn’t have any trouble getting the Roc to take his medicine at home.  All we had to do was remind him that if he didn’t take it his breathing might get bad again and he would have to go back to the hospital.  Enough said.  He downed it like a champ each time.

***

Saturday was warm and rainy and we took it easy during the day, going out to buy some supplies for the puppy we will be bringing home in December.  We drove around a bit trying to kill time before the night’s festivities.  The Roc was bouncing off the walls excited to go trick-or-treating with his two friends down the street, it’s almost all he talked about that day.  He could hardly get through dinner fast enough.  When the first trick-or-treaters arrived while we were eating he was done and wanted to get out there.  Our neighbors appeared with their kids just as we got the Roc into costume.  Look at that grin!

We headed out the door and the Roc was jacked up like we’d already fed him a bunch of candy.  He kept running down the sidewalk and repeating phrases his friend said over and over again like “I’m going to ring THAT doorbell!!”  He wasn’t paying attention to where he was going and didn’t seem to grasp the whole point of trick-or-treating.  I was starting to regret asking our neighbor if we could all go together because I knew that this could happen.  The Roc and Luke tend to really get each other going and they get really silly.  Luke has the ability to switch gears pretty quickly and calm down where the Roc does not.  I had to slow him down and make him walk with me and eventually he got himself under control and did a very nice job trick-or-treating after that.  At the end of the evening as we were nearing our house I nudged GC, pointed to the Roc, and said “Two years ago babe.”  He just shook his head and said “I know.”

There are many times that I watch the Roc and marvel at how he is doing the very things I worried that he might not be able to do.  Walking up the sidewalk toward a stranger, saying “trick-or-treat,” only taking one piece of candy, and saying “thank-you” before spinning around and coming back to us seemed an impossible feat two years ago.  But here he is surprising us and doing it, and most importantly enjoying it.  As soon as his friends were done, he was done and wanted to go inside.  The sky was starting to spit rain and we wanted to get back in to hand out some candy of our own before all the trick-or-treaters went home.  The Roc got to have his Halloween cupcake in exchange for his candy (wonder how long until he figures out that he’s not really getting a fair trade there?!) and he was happy.

Then he had one last surprise for us before the night was over.  He wanted to hand out candy to trick-or-treaters!!  That was a totally new request but we were happy to oblige him.

It didn’t last long – he was done after Harry Potter pictured above.

I am just hoping this week is quiet….it has been so far! (knocks on wood)

Mommy Meltdown

It has taken me a few days to be able to write about what happened on Monday.  I had a Mommy Meltdown.  I haven’t had one in awhile.  Four days later (and a child who finally went to school after a week of being home sick) has given me time to get back to normal, whatever that is.

The Roc has had a cough for a couple weeks and that morphed into breathing issues last week.  I started administering breathing treatments of Albuterol through his nebulizer and ended up laying awake in his bed on Thursday night wondering whether I should pack him up and head out to the ER, or to wait for medical aid to open in a few hours.  I opted not to expose him to the piggy sickies at the ER and we were the first patients at medical aid. (He coughed so hard on the way over he barfed all over himself.  Thank goodness I put him in a zip up hoodie and track pants as it was easy to clean him off before entering the building, the car seat was another story.  Ick.)  They gave him Prednisolone, another breathing treatment, and prescribed an antibiotic to try to help with junk that has been plugging him up.

Over the weekend he rested and took all these medications along with more breathing treatments to keep his breathing under control.  I don’t know if it was the Prednisolone, the antibiotic, the Albuterol, or all of these combined on top of being sick and not being able to breath, but his behavior spiraled out of control.  Even after his breathing got much better, he just went down hill behavior wise.  I chalked it up to all of the above and really tried to be understanding while he threw tantrum after tantrum, screamed at the littlest injustice, (water on his sock, oh no!) and fought me over everything.  Everything.

On Monday I was looking forward to sending him off to school and was dismayed to see his red, crusty eyes when he woke up.  Pink Eye.  I had to keep him home again and make another trip to the doctor.  I made an appointment with the regular family practice and tried to entertain the wild beast of my son until we could leave.  I was really starting to loose my footing in sanity land and chatted online with GC that he had to relieve me when he got home, I was going bonkers.  I was packing my bags to Crazytown, and unless he wanted me to move there permanently, he needed to take over when he got home.  The Roc was uber defiant in a way he hasn’t been in a long while.  He was hyper.  He did everything I told him not to.  He wouldn’t leave the door handles alone, and was repeatedly jiggling them and opening and slamming them closed.  He was screaming at our poor cats and scaring them into the basement.  He was following me around, poking me in the back and slobbering all over my hands.  He kept grabbing the phone, pushing lots of buttons and running away from me.  And more and more and more.  I could go on and on but am feeling a little sick at reliving what I have written so far.  The worst part of all of this was that he did all these things with a huge, devilish smirk on his face.  He was delighting in torturing me.  I eventually broke down crying and he laughed at me.  He.Laughed.At.Me.

He hadn’t done that in a long time.  I’ll never forget that one time after learning that the Roc had autism I completely lost it, slid down the wall, slumped over on my kitchen floor, and sobbed my heart out.  All the while the Roc danced around me laughing.  My being beside myself and crying did not affect him like it should.  He laughed and I cried harder in understanding for the first time the wide gulf that separated him from other children his age.  He should have been crying to see me cry so hard.  It should have affected him and it didn’t.  Over the last two years the Roc learned a lot about emotions and has come to a point where he doesn’t like to see me upset.  Not long ago he told me to “put your happy face on mommy” while we were stuck in a traffic jam and I was sighing loudly in the driver’s seat.  To have him laugh at my crying cut me just as deeply as it did the first time it happened.  It felt like he was regressing before my eyes.  I lost it.

I went into my bedroom, closed and locked the door, and screamed (causing cats to fly off my bed and cower in fear) my lungs out.  I laid on the floor, pounded my fists and kicked my legs like a 2-year old.  I cried like I hadn’t cried in a long time.  I was worn out from the weekend of worrying about him being able to breath and fear of him dying to literally wanting to run away and never come back.  I didn’t want to leave my room but the Roc was out of control on the other side of the door screaming his brains out and throwing whatever he could grab.  I wiped my face, tried to gather some semblance of clarity, and grabbed my purse.  We had to leave soon for the doctor’s office.  I calmly got the Roc’s shoes and coat on, helped him pick out a few books to read in the waiting room and we headed out the door.

This is when my Monday got even worse.  The Roc was a L.U.N.A.T.I.C at the doctors office.  Lunatic.  He tugged on me, on my purse and my hand while tried to sign him in.  He screamed at a women sitting where he wanted to sit.  He bounced around in his seat and wouldn’t concentrate on the book I tried to read to him.  Luckily we were called back very quickly and from there he picked up speed on his downhill slide.  He jumped up and down on the scale so she couldn’t get an accurate weight on him and then he took off running down the hall, barely missing an elderly woman with a cane.  When we got in the exam room he wouldn’t let the nurse near him and he wouldn’t stop barking at her.  My eyes had been pricking with tears in the waiting room and once the barking started I started crying and couldn’t stop.  I spluttered “I’m so sorry, he has autism” to the nurse and she said “It’s okay” without any emotion and immediately left the room.  I was gulping down sobs and trying to pull myself together when the doctor came in.  Again I apologized “I’m so sorry, I was crying LAST time I brought him to see you and here I am crying again.”  (Last time I brought him to this doctor was Dec 08 and he was a loon during that visit as well.  And I cried then too.  Sigh.  I don’t know if she actually remembered that visit, but I do!)  I bear hugged the wiggling Roc while she examined him and then prescribed some eye drops for the pink eye.  I did the ugly cry (You know, when your face contorts, your lips do that weird stretchy thing, you turn all blotchy red, your nose runs, and you can hardly talk? The ugly cry.  Definitely not pretty.) while telling her it was like watching him regress right before my very eyes and how terribly horrifying it was.  Really.Horrifying.  She was very sweet and asked me if I had a good support system, if I had anyone to take over for me and give me a break, and reassured me that what I was dealing with was HARD.  She also said that the steroid Prednisolone was a very powerful and much of his behavior was probably stemming from the medications and after they left his system he would right himself.  I tearfully thanked her and I dragged the Roc to the car.

Once in the car I called GC on my cell phone, laid across the steering wheel and sobbed out the whole experience to him.  (How fun for him right?)  His first question was “You’re not driving right now are you?”  God no.  By the time I got off the phone and picked my head up the cars parked on either side of me had driven away.  Makes me wonder what they thought seeing a woman sobbing over her steering wheel and a silent kid strapped into the back.  It did make me thankful for the amount of hair I have that I was able to hide behind.  I did pull myself together after that and the Roc and I muddled through the rest of the day.  He tantrumed and screamed and I counted the minutes until GC walked through the door.

I took a hot bath when he got home and used the Roc’s bubble bath titled “Overtired and Cranky” as I thought that was fitting.  I didn’t flinch once at the Roc’s screams as it was no longer my problem and it was then that I decided I was no longer going to feel guilty about being home all day while the Roc is in school.  I have EARNED this time.  I have definitely earned some time to breath.

What I did feel guilty about was the tantrum I threw in the Roc’s presence and how I had really fallen apart that day.  I wasn’t a good mom that day and I really felt bad about that.  It wasn’t until 2 days later, while talking to my mother-in-law, when she reminded me of an important fact that made me feel a bit better.  I was relaying this terrible day to her and how I felt about completely losing my cool and packing my bags to Crazytown when she said “Kim, you are only human.”

Oh yeah.

She’s right.

No one’s perfect.

Breath in.  Breath out.  Repeat.

An Evening Conversation…On Repeat

Warning:  This is another post about poo.  If you are offended by this subject, don’t read any further.  You were warned!

Potty training the Roc has been an experience and definitely a test in one’s patience.  He has not been the easiest child to train, and definitely not the hardest, but he still is a lot of work in this department.  He peed in the potty for a few chocolate chips but it took much more to entice him to poo in the toilet.  We learned early on not to force the issue otherwise we (I) would have to deal with the consequence (pooy undies).  We tried bribing him with sweets, toys, an outing to his favorite Mexican restaurant, and none of those could entice him to “go.”  Last spring I was jolted with the realization that I could use the pool as his reinforcement for pooing in the toilet, and it worked! He has been successful ever since, but for some reason it is still a battle.  He will hold it, I swear as a form of control, and you cannot make another person “go.”  So what does an autism mommy do?  I schedule it.  It is now part of his nightly routine.  First eat veggies, then eat dinner, then eat fruit, then poo, then get dessert (if behavior during the day has warranted a treat), then take a bath (the ultimate reward).  Even though this nightly routine does not waver we still have the following conversation every.single.night.

Me:  “You’ve got to poo to get your dessert.”

Roc:  “I don’t wanna poo!”

Me:  “Roc, it’s what you do every night.  Do you want your cookie or should I eat it?”

Roc:  “No!  I want it!  Don’t eat it!”

This exchange may go on for an excruciating amount of time or he may fold early and head to the hall bathroom (because that is the only bathroom for poo, of course!).  Then the following takes place:

Roc:  “Mommy I poo’d!”

Me:  “Okay, I’ll come in and check.  Oh buddy, that’s not enough.  You need to push more out.”

Roc:  “AAAHHHRRRGGGHHHHHAAAAGGGGHHHH!!!!!  No!  it’s enough!  I’m DONE”  I want a cookie now!”

Me:  “No, it’s not enough.  Sit down and go more.”

Roc:  “No!”  He runs out into the kitchen with his pants around his ankles.  (Of course our shades are open and someone either drives or walks by the house.)

Me:  “Roc get BACK in that bathroom, sit on that toilet, and poo!”

Roc:  “AHHRRGGGGHHH!”  He forcefully pulls the door shut and bangs his fists on the wall.

One grunt and 15 seconds later:

Roc:  “Mommy I poo’d!  It is a was a huge one!  That’s the biggest poo I’ve ever seen!  Mommy, can you come and check please.”

Me:  “Yup, good job dude.”

Roc:  “I want a cookie now.”

Every. Single. Night…

I’m hoping there will come a day we don’t have to put poo on the schedule, a day that we don’t have a nightly fight about poo, a day where he will just go when he has to go.

(Oh, and wipe himself too, but I’m not going into that right now!)

About a Dog

The weather was nice this past week and I was feeling both useless and restless, as I have been lately.  The Roc has settled into his routine and I’m trying to figure out what to do with myself while he is at school.  I don’t feel that I’m contributing as much to the family now that my “work” leaves the building for 6 hours a day and have just been itching for…something.

Anyway, last Monday I was pacing around the house and decided that I just had to get outside and enjoy the weather, but I didn’t want to do it alone.  I had the urge to walk a dog.  It was a beautiful fall day and I just wanted to enjoy it with someone (and none of my 4 cats would enjoy a walk on a leash).  So I called my friend down the street who has 3 children age 4 and under and also possesses a big brindle pit bull mix who I’ve never, in the 5 years we’ve lived near each other, seen walked.  I asked her and she said I could walk Tigger anytime.  Now, Tigger is a sweet dog, but he really doesn’t walk well on a lease.  He pulled and yanked me around, and when he saw a squirrel?  Forget about it.  It wasn’t the relaxing walk I was hoping for but at least I did something nice for my friend and for Tigger.

On Wednesday my other neighbor called me from work asking if I would mind going into her house and taking her little 4-month dachshund puppy outside.  He didn’t do his business before she left for work and she was worried that he would soil his crate and/or be uncomfortable all day.  I jumped at the chance to walk another dog on another gorgeous fall day.  I was pretty sure a little 4-month wiener dog wasn’t going to be pulling me around!  He was very excited to see me and donned his collar and leash with ease, until we got outside.  I wasn’t having too much luck getting him to walk on the leash so I carried him down the street to another neighbors house who has two chihuahuas who love to go for walks.  The puppy quickly got the hang of walking after seeing the two chihuahuas on their leashes.  He had a great time after that I fully enjoyed myself.

GC happened to be working from home that day so I bought the little puppy in the house under the pretense of “seeing what the cats would do” (they puffed themselves up like raccoons).  After 30 minutes had passed GC came out on the landing again and saw me sitting in the foyer with the puppy sleeping in my lap.  He groaned, shook his head and said: “You want a dog now, don’t you?!”  I sheepishly smiled and shrugged my shoulders.  He groaned again and walked back into his office.  30 seconds later he came back out and said: “We used to talk about getting a Boston Terrier when we lived in New Jersey.  I wonder how the cats would feel about a dog in the house?  I wonder if the Roc would like a dog?”

My mouth dropped open!  I didn’t think he would even consider getting a dog!

That night we had the following conversation with the Roc.

Me:  “Roc, would you like to get a dog?” (totally thinking he would say no because he has in the past)

Roc:  “Yes, we could have cats and a dog.”

Me:  “Should we get a big dog or a little dog?”

Roc:  “A little one.”

Me:  “What color dog should we get?”

Roc:  “A black one.”

Me:  “Would it be okay if it was black with a little bit of white like Sasha?”  (one of our tuxedo cats)

Roc:  “Yes, black with a little bit of white.”

Not really sure if he understood what “getting a dog” meant we went on to show him some pictures of Boston Terriers and talked about what it would mean to have a dog in the house.  He still said he wanted a dog!

On Friday GC sent me an email with a link to Boston Terrier breeders with pictures of puppies and I replied:  “OMG!  You’re killing me!  I think we’ve found our Christmas present to each other….”  That night we talked about it more and started looking for nearby breeders.  On Saturday went to Borders and got a book on the breed and did some more research that night.

On Sunday morning GC called a breeder in Pennsylvania and she told him she had a brand new litter, only 5 days old, and we could come and see them that day if we wanted.  We drove up after lunch.  After talking to the breeder and her husband and meeting the parents we put a deposit down on one of the male puppies!

The Roc did really well while we were there and we were shocked to see the time when we drove away.  He had stood with us for just over and hour while we looked at the dogs and talked to the breeder.  He did repeatedly put his hand up my shirt, but we were worried he would have a tantrum or at least scream while we were there, so I didn’t worry to much about it.  He was a little confused by the fact that we didn’t bring home a dog that day and we tried to explain that our puppy won’t be ready to come home for 7 – 8 more weeks.

When we were leaving GC shook his head and said:  “I can’t believe that just happened.”  To which I replied:  “What did you think?  We would go look at puppies and I wouldn’t want one?!”  I had known that I would have to act fast when he started talking about a dog.  I didn’t want to give him too much time to change his mind!

He glanced at me and said:  “Merry Christmas.”

I think it will be!

(Oh, and the Roc said we should name the puppy Buggles)

“Say Ahhhhhaahhh!”

Brushing teeth is not one of the Roc’s favorite activities.  When he was younger it felt like a wrestling match that always ended with me sweaty and defeated.  My neighbor once told me that she would wrap her daughter up in a blanket so she couldn’t move her arms and then was able to really brush her teeth because the girl would lay there and scream with her mouth wide open.  Didn’t work for the Roc.  I tried it.  Once.  He knew what I wanted to do and clamped his lips together.  Plus, he has never been one to allow you to wrap him in a blanket, he is much to wiggly for that!  We moved on to using a head lock maneuver which kinda worked.  But I never felt like I was actually getting his teeth very clean, and I dislike psychically struggling with him.  It has been a long process but he is getting better about having them brushed.  Sort of.  I still find myself chanting “Say ahhhhh.  Open wide.  Say ahhhh.  Open wide.  Don’t bite the brush.  Stand up straight.  Stop leaning back.  Say ahhhh.  Open wide.  If you whip your head away one more time….”  and threatening to read less stories if he won’t let me brush his teeth.  I want him to have nice teeth and worry the dentist will tell me his teeth are horrid and that I’ve done a very poor job.

Yesterday the Roc had a dental appointment.  I’ve tried hard to let the him know that going to the dentist really is no big deal.  This is difficult for someone who doesn’t like the unknown, changes in his schedule, strangers touching him, and especially strangers putting objects in his mouth.  He had his first visit to the dentist last fall and while he did do very well during that visit they were not able to clean his teeth that time or six months later at his second appointment.  My main mission last year was getting him in the building, having him go with they hygienist without me, and her being able to at least peek into his mouth, count the teeth, and tell me they were looking healthy.  All of that was accomplished last year.

Yesterday was the Roc’s third cleaning appointment and I was hoping that they would be able to accomplish more this time around.  I told myself if they were not able to clean the teeth I would consider taking him to the pediatric dentist we visited in the spring when the Roc did a nose dive onto the sidewalk.  I really wanted this office in town to work out though as they were not going to restrain him and were so willing to work with him.  I didn’t do much to prepare him for this visit and was silently cursing myself in the morning while making his breakfast.  “I should have driven him by the office last night as a prep.”  “I should have showed him the pictures of the staff from their website so he would remember them.”  “I wonder if this is going to be a big FAIL?”  During breakfast and while driving to the office I reminded him to listen to the lady, lay back in the seat, open his mouth, and NOT to bite them.  I swallowed hard and hoped it was enough.

The Roc told me he didn’t want to go in but I ignored him and led him into the building.  He wanted to sit on my lap and I let him.  His name was called right away and I asked if they would refrain from doing a fluoride treatment on him that day because I want to do some more research on it’s affect on neurology.  They hygienist frowned and asked me to come back with the Roc.  “Uh-oh.”  I thought.  “I’m going to get a speech, this lady is going to think I’m nuts, and I’ve never gone back with the Roc, now he’s going to act up because I’m going to be in the room with him.”

I did get a speech and she did try to scare me by saying that all his teeth might fall out, but I insisted that I still wanted some time to do my own research.  Which I think makes me a good parent, not a negligent one, but I still got the “you’re a crazy lady look.”  I get that a lot.  I’m used to it.  While I was getting a lecture on the wonders of fluoride the Roc was wiggling around in his seat and kicking his legs.  The hygienist wanted him to wear sunglasses and I didn’t try to help her as I knew that there was no way he would wear them.  A little nugget of panic was forming in my stomach wondering if she was going to be harsh with him in my presence.  But to my relief the opposite happened.  She gave up the sunglasses idea and calmly moved onto showing him all the different things she was going to use and how the seat went down (closing up the “hole” that was causing the Roc some major anxiety).  To my surprise he listened, laid back on the chair and opened wide when she directed.  Many times his eyes shifted over to mine and I thought to myself “this is when he is going to start his counter attack and act up so he can end this visit and get the heck out of here.”  But he didn’t.

He did not yell.  He did not scream.  He did not push her hand away.  He did not whip his head around.  He did not bite her fingers.  He did not protest or cry.  He did not clamp his lips together.  He did not panic.

To my utter shock he allowed her to SCRAP HIS TEETH and then polish them.  He was quiet.  He listened when she explained what she was going to do next.  He answered her questions.  He followed her directions.  He made good eye contact with her.  I think she was surprised at how well he did and I know that I was.  It actually felt a little surreal to be sitting back there witnessing the cleaning and his cooperation.

And his teeth cleaned up nicely!  There were a couple stains on the front teeth that were polished away to reveal perfect little white teeth.  One of which happens to be loose…uh oh.  I guess I have something else to start prepping for.  The baby teeth fallout.  Not only is one of the top front teeth loose, two teeth on the bottom are loose too.  She said this is about the age that they start to loosen up and the fact that he had a pretty big mouth injury in the spring may cause them to come out a bit earlier.

Yikes!  I guess I’d better start looking for some books about baby teeth.

I am still, even the next day, astounded at how well he did and thus how much he has grown.  I keep saying it, but I’ll say it again.  He is changing right before my very eyes and it’s thrilling to witness.  Cooperating at the dentist may seem like small potatoes to many parents.  But for me, for the Roc, it is huge.  All these small victories add up to some pretty big changes.  It will never go unnoticed or unappreciated by me.

Hand Obsession

Ohhhh Man!  He is driving me nuts!  He is driving me crazy!  He is driving me bonkers!

How can this

totally adorable child possibly be driving me over the edge you ask?

It is his obsession with my HANDS.  Sounds a little strange doesn’t it?

Where did it come from?  I don’t know.  When did it start?  I cannot remember distinctly, but I know it’s been going on for months, and months, and months.  Many months.  I know it was happening at the end of the school year in the spring because we wrote it into his Functional Behavior Assessment.

It may have started back in January when he began calling his awesome preschool teacher the “big hand teacher” and was resisting hand over hand help.  It has progressed into something much bigger.  It has become a persistent, preoccupation with my hands.  It seems obsessive to me.

He is always conscious of where my hands are, what they are doing, if they are cold, if they are holding something, if they are in my pockets, if I am writing, if I am wearing something like gloves (to clean), or mittens, etc.  He wants me to position them certain ways when I’m resting one hand on the counter while I use the other to stir sauce, brush my teeth, or comb my hair.  Also, he calls them “white hands.”  Which sounds like he understands color in terms of race, but he doesn’t, we’ve never discussed ethnicity with him.  And he says it very drawn out “wwhhhyyyyiiiiiiitttteee  haaaaaaands” so I know he is not referring to the fact that I happen to be a Caucasian woman.  He also calls me a “wwhhyyyyiiiiiiitttteee Mooooooommiiieeee” so I think it has more to do with the way the words sound as he says them, and possibly to be annoying.  He says other things in that drawn out way.  Like when he calls me a “doooooogggggiiiieeee.”  Nice.

So, not only is he overly conscious of where my hands are and what they are doing, he is always touching them, squeezing them, or putting my hand on his neck and then ramming his pointy little chin down on the back of my bony, skinny hand, which I have to say is slightly painful.  Finally, the one thing that annoys me the most, he puts his mouth on the back of my hand, sometimes slobbering on it, sometimes rubbing his lips back and forth over the skin.  It happens whenever my hands are in reach of his mouth, which is quite frequently given that he never leaves my side when we are in the house (unless he is watching a show or in the bath tub, sigh…).

Earlier in the year I thought this was really becoming an obsession, something he wasn’t totally in control over, and I was slightly worried about it.  Now, I really think he is doing it for the attention.  For the negative reaction I eventually give him (yanking my hand away, sighing loudly, making my mad Mommy face, etc.) which makes him smile that evil, adorable, devilish smile and laugh at me!  I am frustrated.  This hand obsession is really bothering me and he knows it.  He even said to me yesterday “I’m driving Mommy bonkers!!” when I ripped my hand out of his grasp after he slobbered on it.  Then he said “I’m obsessed with Mommy’s hands.”  Sigh.  He’s totally doing it for the attention.  Which I cannot understand because this kid gets all of my attention!  If he’s home, he’s with me!  There are times when I have to answer the phone, read his communication book, or type a quick email and then it is 10 times worse, he’s grabbing at my hands and trying to get his mouth on them.  Sigh.

We’ve tried time-out, taking desserts away, taking other preferred activities away, yelling, as well as talking calmly about it NOT putting his mouth on my hand.  I tried really hard to ignore it and redirect, and only lasted a few hours.  I guess I just wasn’t strong enough and IT’S ANNOYING! Yesterday I even threatened to start giving him a piece of broccoli every time he started in on my hands.  He said “NO!” but I never did get out the dreaded broccoli.  This morning I tried to ignore him while he contorted his body to get his mouth on the back of my hand while I helped him get dressed.  He wasn’t too successful at getting what he wanted and so he reached over and jammed his finger up my nose…it took every ounce of my strength not to completely freak-out on him.  I have to be honest and admit that I YELLED at him to “STOP IT RIGHT NOW!” then I stomped down that stairs and he started to cry.  He knows he is bothering me with the hand stuff and he definitely knows that it is NOT okay to ram your finger up someones nose.

I am just at a loss as to what to do?

Any advice before I put my head through the wall in frustration?

For the Love of…Fountains

The Roc LOVES water, especially falling water.  He loves to take a bath.  He loves to swim.  He loves to see rushing rivers and thunderous waterfalls, the bigger the better.  And he loves fountains.  Because of this love I just knew he would enjoy Longwood Gardens in PA.  On Monday the Roc and I, along with our awesome friends Christa and her son P, drove up to see the flowers, fountains, and emerging fall colors.

The boys were ready and excited to go.

Upon arrival we survived the horror of the “bathroom with the blue doors” and “scary flushing toilets” in the visitors center and made our way out into the gardens.  Then the Roc saw his first fountain.

He was in heaven.  Lots of different fountains to see and someone to run with.

The boys really had a blast running around together.  In fact, they were hard to keep track of!  Multiple times I was glad I put the Roc in that bright red vest!

They almost never stopped moving!

They did stop for a brief moment to show off their tree hugging skills,

and we caught them sitting down at a little table where it appeared they were waiting for someone to come and take their order.  Immediately after I snapped this photo they were off chasing a squirrel!

I tried to get them to sit together for a photo but this was the best I could do.

I was able to snap a cute photo of P by a fall display.

The Roc…not so much.  The boy never stops moving!

After lunch we headed into the conservatory where the boys really enjoyed the children’s garden.

Christa tried to get a picture of me and the Roc.  He just wasn’t cooperating (It’s rare for us to have a nice picture together.  He readily smiles for the camera if it’s a picture with his father – go figure!)

I did get a nice picture of Christa and P though!

And at the very end of the day the Roc was sufficiently worn out enough for me to snap a photo of him by another big pumpkin display.  He was too tired to run around any more at this point!

It was a great day.  A day spent with a good friend who, having been living this same kind of life, really gets it.  Neither of us bats an eye at screaming outbursts, conversations that consist of scripted lines from Little Einsteins episodes, and we both knew just when it was time to leave and get back to the car, our time having run out for good behavior and keeping it together.  The boys enjoyed being outside and being together, and I always enjoy Christa’s company.  The Roc got his fountain fix and I know now that we will be able to come back, maybe for the Christmas display.

The best day

I’ve been meaning to post about last Saturday because it was a truly wonderful day.  The best day in many, many, many days.  I am still basking in the glow of Saturday (even through the horrid meltdown last night and the crankiness of this morning).  Here’s why:

In the morning we went to the 2nd annual Special Olympics horse show so the Roc could “compete.”  I had thought about making a social story for this event and even asked his instructor for pictures of the facility and of last year’s event.  I never got around to making the social story so we looked at the event pictures on Friday night.  We talked a lot about the fact that he would be riding a new horse at a new place, but his instructor would still be the same and he would do the same activities he does during lessons.  We got there just as the opening ceremonies started so GC dropped us off and went to park the car.  The Roc was immediately anxious about the crowd and so he ended up where he always does during times like those – on my back.  (I wonder what I will do when he gets too big for piggy back rides?!)  We watched the torch being lit and then went to find his riding instructor to get our instructions for the morning.

Once the Roc got his number and the time he would ride we took a little walk to an area less crowded and let the Roc do some hill climbing to burn off some of his anxiety.

Soon enough it was time to head over to the ring and wait for his turn to ride.  Again the Roc rode on my back through the crowd and I worried a little about how he was going to do because he seemed so wound up.

I didn’t need to worry though.  As soon as he got his helmet on he went off with Becca willingly,

and then he GRINNED the WHOLE time he rode!

Except for those moments each time he passed us and he yelled “Hi Mommy!  Hi Daddy!”

And when he concentrated to stand as they went over the poles.

When he was done he stood on the podium to receive his medal from the police officer.

(He looked right into the police officer’s eyes after he got his medal and grinned that famous grin and we are cursing our too slow camera for we didn’t catch it!  It’s time for a new camera.)

After he got his medal we left the event and headed across the border into PA to go apple picking.  The Roc was very excited to go on a hayride so we did that first.  He surprised us by not stimming with the hay, which is what he usually does whenever we go on a hayride.  I think it may have something to do with the medal he insisted on wearing the rest of the day!

Once the hayride was over we jumped on the shuttle out to the apple orchards and the Roc helped pick the apples.

He was so pleased with himself and wanted to keep picking even when our bag was full.  He shocked us by eating an apple with the skin on – something that never happens at home!  He waited patiently for the shuttle back to the parking lot even though he had to “go” and told me “I want to pee on the grass right here.”  He does look a little uncomfortable…

We ended the day by stopping at a Thai food restaurant for a late lunch and he did awesome in the restaurant.   He was excited to point out all the different kinds of lights, the artwork on the walls, and did a running commentary on what the waitresses were doing.

On the ride home GC and I looked at each other and he said to me “This has been the best day.  The best day in a long, long time.”  The day was amazing because the Roc was happy throughout, he didn’t scream about anything, throw any tantrums, or whine about anything.  He was happy.  It was an especially good day for him.

More than all of the things the Roc did right on Saturday, I think that GC meant it was the best day since we received the diagnosis two years ago.  We have each struggled in our own way to come to terms with autism and at the same time have watched the Roc change before our eyes.  Two years ago we dealt with limited communication, many tantrums and much screaming on a daily basis, and we just couldn’t picture a day like Saturday.  A day where we would do so many activities in one day.  A day out as a family, making memories and having fun.  A day where the Roc would be talking to us, describing what he was seeing.  A day where he would transition so easily.  A day where he would keep himself together all day.  A day like Saturday.

Something I know for sure is that Saturday didn’t happen magically.  We’ve all changed.  The Roc is able to handle more change and is able to verbalize much more than he could two years ago.  That is most definitely evident.  But GC and I have changed too.  We know what the Roc likes and doesn’t like.  We know his limits and respect them.  We’ve learned to heed the warning signs or deal with the consequences.  Maybe most importantly we prepare as best we can and we keep trying.  All of us.

Saturday was the best day.

I have no doubt we will have more of them.

Blog Award

I was so surprised when I opened up my email this morning to find that Tanya from Teen Autism awarded me the Lemonade award!  I am honored!  I recently found Tanya’s blog, following her back through a comment left on another blog, and as soon as I started reading, I was hooked.  Her blog is one of the few that I had to go back and read the archives.  She is a fabulous writer, the single parent of two teenage boys, one with autism, and her words always resonate with me.

The Lemonade award is bestowed upon those who have gratitude and/or a great attitude and there are some rules attached.  The fine print of this award is as follows:

- Put the Lemonade logo on your blog or within your post.
- Nominate at least 10 blogs with great attitude or gratitude.
- Link the nominees within your post.
- Let the nominees know they have received this award by commenting on their blog.
- Share the love and link to the person from whom you received this award.

My nominees for this award are as follows:

What We Need

Diary of a Mom

Autism in A Word

Good Fountain

To Sleep or Not To Sleep

Pixie Mama

Mama on the Edge

Maternal Instincts

Hoping Not Coping

Embracing Spirit

I started blogging a year ago at the suggestion of my sister.  She told me over the phone that the stories I would tell her were funny and I should blog them.  Well, I don’t consider myself to be very funny, even though I can make my sister laugh, but I started the blog anyway.  I quickly realized that it was the perfect place to record the Roc’s progress and to let our far away family and friends know what was going on with him.  It also became a place for me to let out my fears and frustrations.  My own space.  To tell this from my point of view.  And then I started to read other autism mommy bloggers (Darcy at What We Need was my first).  I quickly became hooked on reading about the lives of other people with children on the spectrum.  I frequently nod and say “me too”  while I read, sometimes I cry for the pain of someone I’ve never met, sometimes I leak tears of joy because I really understand the significance of the little steps, and sometimes I laugh out loud (or snort as I tend to do when I read Mama On The Edge).  I feel like I know these women and their children, even though we’ve never met in real life, and it gives me the feeling that I’m not alone in all of this.

So here’s to the next 10 award winners!  Pass on the love ladies!