Successful Reasoning

Brian has refused to take a bath or shower since his fall last Saturday.

Gross, huh?

But honestly, I felt this was a positive step.  He correlated his injury to the bath and he remembered it, therefore finally putting something into his brain under the category of "danger".  This kid still has no fear of vehicles, heights, or strangers.

Today, after him being sick all last night, I kept asking, "Are you ready for a bath?".  And I kept getting him screaming "NO" at me.

We were lying in bed and I whispered the request to him again.  He answered negatively and I watched his hand go up and faintly touch his stitches.

I kept my voice low and calm and said, "Brian you know it was slippery in the bathroom because you dumped shampoo & conditioner all over the floor, right?  When you dump out all the bottles onto the floor it makes it really slippery and that's why you fell.  If you go in and take a bath and don't dump the bottles out it won't be slippery."

He was quiet and I allowed the pause.

I then asked, "Do you understand what Mama said?"

And he said, as clear as day, "Yes".

I asked again, "Are you ready for a bath?".

He replied, "Yes."

And off he went to the bathroom.

Thank god, because he was starting to really stink.

I'm still amazed at what he does understand receptively when at other times he just seems to not understand a single word.  It's simple moments like these that make me push his educators and therapists.  He understands a whole lot more than he lets on.

Just Another Side Effect

Every so often I check my blog stats.  When I do this I can see which posts are getting the most views, where in the world my readers are located, and I can even see what search terms people type into Google that bring them to my page.

Usually that last section gives me a few laughs, however today I froze.  I reread it again.  I couldn't believe the sudden onset of emotions I felt.

I had read...

i hate being autistic i don't want to go on any more

People who know me know that I struggle with this so much.  I hate autism.  I hate it.  I hate it.  I hate it.  People look down on me for saying it.  They think because I say it I don't cherish and value my son. This is so far from the truth.  I love my little boy more than I can even fathom.  I will always love him with this immensity and intensity regardless of his functioning level.  But do I wish more for him?  Of course I do.

I can see autism as a separate entity from my son.  It is not who he is- it's a roadblock that is making his life harder than others'.  It effects him medically, cognitively, socially, emotionally, neurologically, etc., etc.  

I watched him the other morning throw himself on the ground in the middle of the playground screaming and banging his fists on the ground when it was drop off time.  Did I know why?  Nope.  And I spent the rest of the day wondering what was going on with my little guy.  How unhappy is my little boy?  How confusing is the world around him?  How frustrating is it for him to not be able to tell me what's wrong?

I hope with all my might my son will be able to navigate Google when he's older but I certainly hope that at that point we have eradicated autism as much as possible from his life.  I hope autism isn't making him feel so much of an outcast that he one day feels that he can no longer go on.

Just another side-effect of autism.  Again, I hate autism.

By the way, is there any way to figure out where that specific searcher is from?  I wish I could give him/her a hug and talk with them.  I wish there was a way to show them their own self-worth.

I Wanna Be Sedated.

Yesterday we spent eight hours in our local ER so Brian could get stitches.

A lot of our friends and family called to check on us and again and again I heard myself saying, "It's not a big deal, autism just turns it into one."

Sure getting stitches is hard for any child but have that child have autism, a language barrier, sensory dysfunction, and just a general confusion of what exactly is going on and it becomes a nightmare.

When we first arrived at the ER Brian was still in shock.  I had to carry him in, he wasn't making any vocalizations, and was limp.  His lethargy scared the hell out of me.  My little boy is never still for more than a minute.

The nurses fussed over him and looked at me like I was just trying to blow things out of proportion when I told them upfront he had autism and this was going to be a difficult visit.  He allowed them to take his blood pressure and temperature without even moving on my lap.  They continued to roll their eyes at me.

We finally got back to a room where it took forever for a doctor to come in.  When she finally did she started drilling him on how he got the gash on his forehead even though I had already told her he had fallen in the bath.  For a few minutes I thought she was just being friendly and then I realized she really didn't know he couldn't talk...wasn't that the whole point of telling the nurses up front so it could be carried along?  I said, "He is functionally non-verbal."  The doctor looked at me and said, "Really? Do they know why?".  So I took another fifteen minutes explaining he had autism and what that meant as it related to our ER visit.

After my long explanation she told me her plan was to put on numbing cream, wait 25 minutes for that to work, then do a numbing injection, and then the stitches.

I laughed.  Seriously, laughed out loud.

As soon as they tried to get the numbing cream on the gash my boy finally came out of his shocked stage.

The young doctor looked at me and I swear her eyes had tripled in size while it took three professionals to apply the cream.

Waiting around for stitches.

She left, shocked, not saying a word.


She returned another twenty minutes later asking me to sign a release for him to be sedated.

We waited for hours to be sedated.

And my boy ran around, laughing, skipping, and yelling "I'M HERE!".

He was an angel.  He had much more patience and cheer than I did.

Finally it was time for his injection.  I watched as the blue scrubs filled the room.  They were prepared this time.

Five adults to hold him down and he still managed to break free and grab the gauze off the injection site.   My eyes welled up as I watched his eyes roll in the back of his head.

I swallowed hard because there was no way I was falling apart at that point.  I was going to hold his little hand through the stitches.  I would not leave my baby on that table all by himself.

The stitches were quick, only five of them, but even so he started to stir out of the sedation before it was even done.  His arm, that I wasn't holding, reached up to push the doctor's hand away as she worked.  The doctor's eyes again grew as she exclaimed she had never seen anyone come out of it so soon.

We spent another lifetime waiting for the effects to wear off as his stomach did not agree with it.  Vomiting over and over again despite the anti-nausea medicine they gave him.  However he kept smiling and rubbing my cheek and saying "Home".

And finally we left- leaving a trail of vomit behind us even in the waiting room.  8 hours and 5 stitches later.

Now the real adventure begins of trying to have him keep a bandage on for at least a week and no picking for three weeks.  

All of that for this little scar.

What Did You Do On Your Christmas Vacation?

Today was the boys' first day back to school.

As I drove away after dropping them off I started thinking about all the kids sharing what they got for Christmas and the fun ways they had spent their vacation.

And I wondered what Brian would say if he could.

I think it would go something like this,

"For my Christmas vacation I wanted to have a marathon movie watching day every single day but my mom just wouldn't allow it.  However I did become a bit attached to a new movie, Peter Pan, and have acquired some great scripts from it.  My mom just LOVES when I yell "I CAN FLY!" and I jump off any surface I can find onto her back.  She makes a funny snapping sound when I do it.  My other favorite script is "FIRE AWAY!!".

One morning when I was taking a bath I decided to do a science expirement.  I only had five minutes of unsupervised time but I managed to dump out three bottles of lotion, a bottle of hair gel, a bottle of conditioner, another of shampoo, and spray a lot of the hairspray right into my tub.  It smelled great!  My Mom wasn't pleased....maybe, she didn't like the smell?

Yesterday I really wanted to look pretty so I opened up my Mom's body shimmer.  I dropped it by accident and now our WHOLE livingroom is sparkling!  It wasn't my intended outcome, but I like it!

Oh, I also broke my second pair of $150 therapeutic listening headphones.  Same way.  I propped them up and then stepped on top of them and snap.  Again, for some reason, Mom wasn't too happy.

I had a great Christmas.  I got THREE new Thomas engines!!! Yes, I opened a dozen other presents but I forgot what those were.  Can you believe I got THREE NEW THOMAS ENGINES?!?!?!

I got to sleep in my Mom's bed a few nights during vacation and I just love when she lets me do that.  I love to sleep sprawled right across my Mom and moving every five minutes.  Mom complains but she's always smiling and continues to snuggle with me so I don't think she really minds.

So those were my highlights.  Bet you can't beat that!!"

Just Imagine.

Corbin had narrowed his lunch choice down to pizza or macaroni and cheese.

Corbin turned to Brian to ask him what he thought about it.

Brian ignored the question.  I tried to repeat it but it was obvious that the words were just not registering for Brian.  Mainly because we were in the dreaded grocery store.  You know the one.  With all the smells, the flickering/humming lights, and people everywhere!  

So I directed the boys to the frozen aisle and pulled out a package of Udi's pizza crusts and Amy's mac and cheese and asked Brian again, "Pizza or Mac and Cheese?".

Brian's face lit up and instantly pointed to the pizza crusts and yelled "PIZZA!".

Then Brian's face immediately fell as I put the crusts back into the freezer.

I tried to explain to him as much as I could that we had several packages of them already in our own freezer at home and I was on a budget and I didn't want to buy products we already had.  Yeah, like that lengthy one was going anywhere near his frontal lobe.

He seemed okay, a little whiny, but perked back up when I told him to grab a package of pepperonis to put on his pizza.

I thought the crisis was averted until we pulled into the checkout lane.  All of a sudden a floodgate opened and Brian just started crying.  Tears running down his face, screaming cries, and jumping up and down for me to hold him.  I pick him up briefly and I see the older man ahead of me shake his head as he looks at Brian's feet dangling down past my knees and my frame almost snapping backwards in the effort to pick him up.  I look him directly in the eyes and his stare falters.

After a few minutes of holding Brian I have to put him down.  He's heavy in his own right but add the winter coat and the boots and he just becomes even more awkward to hold.  As soon as his feet hit the floor he starts crying again and this time starts yelling, "Pizza!".

If I hadn't been next in line I would've run and got the crusts at this point but once again I stooped over and heaved his bulky frame up into my arms.  Once again I see people looking.

Honestly, if I knew it wouldn't send my child into even more of a meltdown I would've started screaming at the onlookers.

Really, all I wanted to say to them was, "Imagine struggling everyday to tell people around you what you want  or need.  Imagine it being a real challenge to get those neurons to talk to each other and finally succeeding in getting ONE word out that makes sense to those around you.  Imagine then not having the auditory processing ability to always understand how the people you love respond to that word.  Imagine feeling quite successful in the fact that you could say what you wanted for lunch and then thinking people around you didn't understand.  Imagine having the full IQ capability locked up in that beautiful brain of yours but not being able to access it at will.  Imagine having language, that thing we all take for granted, taken away from you.  Then tell me you wouldn't feel like screaming."

We finally made it out of the store thanks to Corbin.  Who loaded the conveyor belt, pushed the cart, and even ran the debit card.  My nine year old son had more compassion in his pinky than most of the onlookers at the grocery store that day.

Once we got home I ran in, pulled the Udi's crust out of the freezer, and handed it to Brian.  And finally Brian smiled. He knew his request had been heard.  

 

I'm A Believer.

Over the past couple of weeks both boys have been to a homeopathic doctor, the pediatrician, a psychologist, an AAC expert, and of course our regular weekly visits with the occupational therapist and speech therapist.

Within the next month or two we're planning on seeing a neurodevelopmental therapist, a developmental pediatrician, a behavioralist, and a neuropsychologist.

It's a lot.  And sometimes I just wonder why am I doing this?  Sometimes I think I'm wasting a lot of money, energy, and time.

However, it's not in my nature to just sit and continue on our current path if there are avenues we haven't explored.  If there are new concerns that are popping up I'm not going to just sit still and not try to figure out what we can do about it.

I'm not a skeptic, obviously.  I'm a believer.  I hold on to hope that there are keys to each one of my children that if we find it we'll see changes.  I am a believer because we have found those keys for certain areas like gut issues and self-injurious behaviors.  I am a believer for my own children and for all the children that I work with.

"Someone" asked me today how I was making all this money to pay for it all.  I just simply answered, "I find the money.  If there is a door that opens for us and the only block is a financial one, then I'll cut something else out from our expenses.  We don't have to go to the movies or have the newest gaming system out there."

Tomorrow we drive two hours to see a neurodevelopmental therapist that is trained and certified in everything: Bal-A-Vis-X, Brain Gym, Rhythmic Movements, Masgutova, Jin Shin Jyutsu, Craniosacral, and a ton more.  She's only here in the state for one day to do consulting and I feel very blessed to have both my boys being able to be seen by her.

So while that "someone" grumbles at me for spending my money (and where it's his place, I'm not sure), I can only look at it with my optimistic eyes that maybe she'll help us move our current therapies in a new direction and we'll see even more growth.

I look at it as I'm giving my two boys the best Christmas present I can- another chance to ensure their future is as bright as possible.

Continuing the Fight

If you've been following along at all on this blog then I'm sure you are familiar with our struggle with our local school district.

In the past few months I have obtained legal advocacy, evaluations, and had some very interesting IEP meetings.

Today was another one.

Three hours long.

The longest IEP meeting I think I have ever participated in as a parent or as a practitioner.

In the middle of the meeting I took the moment to address the team and tell them that everything they were laying out on the table sounded wonderful.

Sounded.

And I emphasized the word.  Because  I feel like I've been hearing about these changes but not seeing them.

I reminded them that we are nearing halfway through the school year and the ENTIRE school year thus far has been a waste of my son's time.

My son is not there to be taken care of as if he's in daycare.  He is there to learn.  It may be harder to teach him and to figure him out but that is their responsibility.  He has a right to an education.

The feeling of the room was somber and there were a lot of nodding heads around the room.  I, honestly, think they all agree with me, yet because everything is so fragmented and there is no background, experience, education, or training going on they do not know how to do it.  Again, not Brian's problem.  It's their problem.  They have a real problem on their hands.  

Agreed upon today was training (who would've thought it?  autism training for an autism program? huh?), hiring an autism specialist consultant to be used on a continuous basis, weekly 30 minute meetings for his entire team to get together and discuss him, adding TouchMath and Project Read to his curriculum, lunch bunches, increased time in Special Education, hiring an AAC consultant for continuous use (monthly), an individualized structured sensory diet with regular sensory breaks every 30 minutes, and new data sheets to track his engagement.

I'm again feeling a range of emotions.  I'm feeling sad for the time that has been wasted and the growth that we could have seen if his programming had been up to par to begin with.  I can't believe how much easier it is to get what I want when I have an advocate in the room.  Unbelievable because  I have asked for some of these things in the past and always been told it wasn't possible.  

I'm feeling proud for not giving up and continuing to push.  I'm really being positive that because of this whole situation all of the kids on the spectrum at Brian's school will benefit.  I'm hoping I'm shaping a program for all of them.  

When I left the school today a staff member that I don't even know other than seeing her in the hallways stopped me and asked how my meeting went.  I told her it went well.  She asked if it was done.  I told her that we had some more evaluations and consultations so we would be meeting again shortly.  She shook her head in disbelief over the time we've put in so far and she said, "We've all been rooting for you Heather.  We think it's amazing what you're doing to make sure Brian's rights are being met."

And with that I smiled.  It's nice to be acknowledged for the fight that many of us parents of kids with disabilities have to do all the time.  It's hard work, but we do it because we have to.

We do it because they are so darn cute. ;)