Tuesday, January 25, 2011

The Wahl Custom Shave System

My husband and I continue to say "he has a beard, he must be really smart" and start snickering, taken from http://sneathenfamily.blogspot.com/2011/01/funny-friday.html this video.  The ridiculousness of all of it just strikes a chord with us.  Obviously, the fact that someone has a beard, does not make them smarter than you.  In the video, if you haven't seen it, the Special Ed director is telling a parent their school psychologist is smarter than her because he has a PHd.  When the mom says that she also has a PHd he follows with "but he has a beard."  Tt is also funny (to us) because beards have long been a topic of conversation in our house.  I am not sure why, but Daniel loves beards.  In the same way that he yells out "look a little yellow car" or "look a red car" or "look a motor home" or "look a (insert emergency vehicle here)" he yells out "look that guy has a beard!"  The obvious difference between all of these things is that a motor home doesn't turn and look at you with the expression of "yeah, so what?" on it's face.  And if the guy has a really loooong beard.  Forget about it!  It's his FAVORITE. He gets so excited he can barely contain himself.   You would think that ZZ Top would be his favorite band, but I haven't introduced that group to him, yet.

Although I can hear Daniel now, walking around singing "Sharp Dressed Man" whenever he is feeling particularly handsome...

Yes, Daniel loves a beard.  When Todd has missed a morning shave, Daniel has loved to rub his hands on the stubble and talk about his whiskers.  I wish I knew what the draw was, but I do not.  Come to think of it, having hair just growing out of your face might just seem silly enough to draw his attention.  Why does that happen?  Why do some people have it and some don't?  All possible questions going through his mind. 

With conversations on beards he is SURE to start scripting about "Wahl's beard and mustache trimmers".  He knows entire ads about these things.  Now THAT, I know where that comes from.  So I'll digress for a moment.  Back when he was about three years old and things were rapidly falling apart in our lives, haircuts became a huge huge problem.  Of course Daniel has always been a kid with the thickest, fullest head of hair on the planet.  At 6 months old he lost all that baby fuzz, it just fell out one day.  I swear to you that weeks later he had a full head of hair.  This caused us to start getting haircuts by his first birthday.  At first it wasn't a problem.  He'd go and sit in the car at the kid hair salon that had video's over head playing Barney.  He'd get his sucker and be a happy kid.  Then, as with everything else, one day it just changed.  He wouldn't go.  He was scared to death, he'd go into an absolute meltdown kicking and screaming, fight or flight.  I had no idea what to do with him.  After numerous tries from both my husband and I and several instances of slinking with a screaming kid unsuccessfully out of the kid salon, we gave up.  I went and bought a clipper set.  Did this solve my problem?  NO.  But it did save us public humiliation and we shaved him at home.  Don't get me wrong, it wasn't necessarily us demanding he have short hair.  Not only did he hate haircuts, but he hated having long hair.  This is what you'd call a vicious circle of hell.  At the time we didn't understand that his sensory system was out of control, that the clippers probably DID actually hurt.  We didn't know he had autism and what that meant.  So, and this pains me to say, we held him down and cut his hair with clippers.  He would scream and fight and it was HORRIBLE and exhausting. 

Along with those clippers I purchased, came an instructional video.  I don't remember the details on how it started, but he started watching this video and of course, to this day, he remembers every word of it.  It was a rather old video and he still starts quoting about "the flat top" or the "fade" haircuts.  All of the possibilities with the "Wahl custom shave system!"  He scripts on and on and always ends with "Wahl makes it easy".  He says it every time we go to get his haircut or mention that he needs one.  We are actually going today after school.  I am happy to say that he now goes to my (wonderful!) stylist and successfully gets a very nice haircut!  It DOES get easier!

So one day he saw a commercial for the beard and mustache trimmer.  Well, that was IT.  Since then he says that someday he WILL have a beard AND get to use the Wahl beard and mustache trimmer.  Could anything possibly be better than that!?  I have heard it for years!  This weekend, I was sitting next to him at Zachary's basketball game.  I looked over at him, in profile and tried to brush something off of his chin.  I gasped.  Really, I gasped! Because I realized what I was brushing away was ATTACHED.  In fact there was more than one.  There were MANY long whiskers on his chin.  I could see a shadow over his lip.  He is growing facial hair.  He asked me in a very annoyed way what was wrong when I looked so shocked.  I told him he had whiskers on his chin.  To which he simply said "I'm getting old.  Now I can get a Wahl beard and mustache trimmer!"  He got a very self satisfied smirk on his face and said, "I want a beard".    At least he'll be smart.

Monday, January 17, 2011

It's Not You, It's Me

I was having a "conversation" with my Aunt yesterday.  That is in quotes because it was in our usual way that we converse, through email.  I had updated my Facebook status the night before that I was at the middle school with Daniel.  She was inquiring about why we were there on a Friday night (especially before a long weekend).  The answer was it was a middle school "Activity Night".

Activity Night consists of several things.  First and foremost is the DJ in the large open lunch room.  Complete with flashing lights and large speakers.  This is the center of the evening.  The lunchroom has a lot of windows to the hallway with separate doorways, which allows a good set up for having other games in the hallway.  They have Foosball, ping pong and cornhole.  I linked cornhole so those of you who do not live smack dab in the middle of a college town and experience tailgating 8 weekends a year can look it up and not wonder what they are making available for these teens!   They also have the gym open for basketball, although I have never made it to the gym because Daniel goes for the dancing. 

Yes, that's right.  My sensory sensitive, autistic son, prefers to hangout in the lunch room with the LOUD music, the flashing lights and masses of teens jumping to the beat of Katy Perry.  I say jumping because there seems to be a lot more of these large groups of kids jumping in unison than actual "dancing".  Not that I'm expecting waltzes or anything, but I don't seem to remember groups of jumping.  I'm getting old.  He has been to all but one activity night since he started at the middle school last year. (ours is a 7th & 8th grade school). 

Last year I was a volunteer at all of them, because I knew the mom who was in charge of gathering the saintly mothers who gave up a Friday evening to stand guard around the halls so children can't steal off to other parts of the building or to watch the dance floor and gym to make sure everyone is doing what they should be, or even volunteering to sell pizza, pop and candy to the always hungry teenagers.  I usually took one of the positions of the dance floor since that is where Daniel prefers to be.  It also allowed me to move around and keep my eyes on him.  Although this year, I do not know the person in charge of volunteers and she seems to be tapping into her group of friends to work the evening, since I know not one of the adults on site.   I have been doing a lot of reflection about how these nights make me feel.  Frankly, it's not all that pretty.  But I am nothing if not honest, so here it goes. 

I spent that whole day of Activity Night, griping, snapping and having a huge knot in my stomach.  In short, I'm on the brink of a panic attack.  I actually do not understand this at all.  I don't know why I do this to myself and what I want to do is say "NO you are staying home with me in the safety of our house".  But safe from what?  I'm not sure I really know. 

Maybe it has something to do with him growing up, but I don't really think that's it.  Maybe a very very small part of it, but not much.  I sometimes say I want to keep my eyes on him not because of what he will do, but to protect him from being teased.  I'm not sure why I'm afraid of that, because we have been really really lucky.  I have had no reports of him being teased since second grade and that was one incident on the playground.  Those kids were all taken into the Principal's office and talked to.  I don't know what was said, but that principal said she was confident it would never ever happen again.  And she was right (oh to be a fly on THAT wall) We have built up a large and very faithful group of kids around him.  So far it's worked.  Maybe it is the unknown.  There are a lot of kids in the school that fed from other schools. Kids he hasn't been with since 1st grade.  But I don't think that's it either.  Again, maybe a very very small part. 

Will he get overwhelmed with the stimulation?  That has never happened in this scenario.  I think we can safely say that after 8 activity nights it is not going to happen.  He leaves the room and goes into the hallway when he needs it quiet. 

Is it that he has ZERO understanding of money?  When he wants to buy a snack he doesn't know how much to give or how much he should get back.  He might walk away without his change.  He might cut in the line and cause a problem.  Also never happened, but I do usually coach him before he wants a snack. 

Is it that he doesn't always know when he's "done"?  He won't know when to say when and call me if I wasn't there hovering like a helicopter mom?  Maybe. 

I watched some of his "friends" go out of their way to say hi to Daniel and he very enthusiastically greeted them in return.  It pains me that he can't sit and hang out with them and have a conversation.  He just can't do that yet.  He'll end up quoting Elmo and Barney and Sesame Street.  That makes my stomach hurt for sure.  It's hard to watch.  But it doesn't seem to bother anyone but me.  Daniel seems perfectly happy with the interaction he receives. 

So what is it?  What is the problem?  Well I finally decided that the only problem is ME. It is totally MY issue and  I need to get over myself.  I need to stop the panic attack and let it play out.  Actually I DO do that.  I keep all of the turmoil going on inside of myself.  The only way you'd know is if I snap at you because I am at the end of my rope.  So that's what I do.  I suck it up and go.  This time since I wasn't working I brought a book.  I sat in the corner and read in the dark room.  Sometimes Daniel would come sit by me.  I realize this doesn't look "normal" but honestly, not much about his situation is "normal".  The kids are used to me being around.  I thought the book would be a buffer so I'm not staring at what everyone is doing.  I did receive two comments from adults who wondered how I could a.) see in the dark and b). concentrate among the banging music.  Neither was a problem.  Like Daniel, when I am totally overwhelmed and in sensory overload I HAVE to block everything out around me.  It was actually the most focused I've been reading in a long time! 

Near the end of the night, Daniel looked tired and he was sitting by me basically waiting for the clock to read 8:30.   A girl from his class came over with some pizza.  She set it on the table, then said "Daniel, do you want to dance with me?"  He didn't hear her (because he is blocking everything out too!) so I repeated it to him.  I saw his face change from exhaustion to excitement.  He SCRAMBLED up to his feet and yelled "YES".  Following her out to the dance floor.  I looked over the top of my book but could only see the top of Daniel's head over the crowd.  I couldn't see them dancing together.  I restrained myself from running out there and taking a picture on my phone (I would never do that, but I admit the thought ran through my head!) I left them alone and went back to my book.  It was only then that I realized that the knot that had been in my stomach all day was gone.  I silently patted myself on the back for overcoming my own fears (yet again).  That I just let Daniel be Daniel and let him have the experience.  Maybe someday soon, won't even go in and just drop him off.  Maybe. Someday.  One step at a time please.

Friday, January 14, 2011

Funny Friday

I was chatting with a colleague yesterday about work and remembered this video that someone had posted on Facebook over the holidays.  My husband and I watched it over and over laughing hysterically!  Unfortunately, the reason it is so funny is because it is so true.  I'm sure most of you can relate to it.

At the last follow up visit with Daniel's psychiatrist I ran in the door few minutes late.  I was at a work function and Todd and Daniel had met me there and were already sitting in the Dr's office.  When I plopped down in the chair out of breath from running into the building and my anxiety at being late. I finally gathered myself and looked up at the Dr.  I had seen him many times before but this time all I could think was "he has a beard, he is very smart" and try not to giggle the whole time. 

I hope you all find the humor in it as I do.  It is also good to know that it is "almost summer". . .

Wednesday, January 12, 2011

Let it Snow?

It's January in Michigan.  The snow has been around for a while now and is likely to be here for a few more months.  Every winter the same issue comes up.  Daniel eating snow.  Ok, I KNOW, I know, "all kids eat snow".  True.  Most of the time I really don't care.  I learned over the years to look away and pretend I don't notice.  Then when some parent or child says "Daniel's eating snow!"  I will pretend that this is a surprise to me and ask him to stop.  He generally looks at me with confusion, because, I always know he's eating it and only sometimes tell him to stop.  No wonder our kids don't understand us!

It isn't so bad after a fresh few inches has covered our yard and he scoops it up to eat it out of his glove covered hand.  But despite years of rule making about eating snow he still seems to defy them whenever possible.  This is when I don't like him to eat snow : 1.  by a road or sidewalk that most likely had salt or Lord knows what other chemical put down to melt the ice,  2.  the infamous "yellow snow" all our mothers warned us about, and 3.  that disgusting snow that has been there and melted down and is turning grey from mud and most likely had squirrels, raccoons and rabbits running around on it.  Occasionally Daniel asks to "go outside" in these months to "walk around in the back yard".  This is code for "I'm going out there to eat all of the snow I can in the next 10 minutes."  He loves that coldness in his mouth and I can only guess that he gets some sort of sensory calming from it.  That is why I say "ok have fun!" and turn my head the other way while he goes outside. 

He also opens our sliding glass door and scoops snow up and eats it, that way he doesn't have to don his winter wardrobe for a quick fix.  I was going to take a picture of the finger prints lined up outside of our door, but we received a fresh blanket over night and the evidence is now gone.  There are two things that bother me about this:  1.  It is well documented that raccoons walk along that part of our deck, right next to our sliding glass door.  There are many times in the winter that we have been sitting there eating our dinner only to have a big raccoon face peer in wondering what's on the menu.  This is always very surprising and never fails to freak me out.  City raccoons are very bold.  2.  Our deck gets so much direct sunlight in the summer it is in a constant state of peeling (it has a sort of paint/stain mix on it).  So I worry that he will be getting that mixed in with the snow....

This all leads me to one of Daniels Christmas gifts.  Hamilton Beach 68050 Icy Treats Ice Shaver, WhiteHamilton Beach 68050 Icy Treats Ice Shaver, White

That's right, we bought him a snow cone maker. I bought it on our December snow day from school, when I was sitting here panicking that I had hardly bought any presents  I went online and started ordering things and this was one of my finds!   It is now set up in our appliance garage next to the coffee machine and toaster, ready to make snow when needed.  We have discussed that he can have as much of THAT snow as he wants.  The other day when I heard that tell tale sound of the door sliding open, I gently called to Daniel about eating clean snow.  I was in the basement and didn't even come upstairs.  A few minutes later I heard the ice machine in the refrigerator dispensing ice.  Then I heard the LOUD grinding of the machine.  We  Todd has shown him how to use it several times and he has it figured out.  Since he doesn't want any of the flavorings we bought (I knew that would be the case, but bought them for Zachary) we really don't mind how often he uses it.  It has pretty much gone exactly as I had planned (I love that).  It isn't perfect.  He is human and it is still easier to open that door and grab a handful than to put ice in the machine and let it grind (not to mention quieter).  But I think we are on the right track.  He still either doesn't care or doesn't quite understand why it matters so much.  But I'll keep working on that.  In the mean time, this machine also has recipes for frozen margaritas......something for everyone! 

Monday, January 10, 2011


Some of you know that I have been working as a paid advocate for the last 15 months.  It's been filled with some very high highs and some very low lows.  I can't, of course, write about any of it here because of privacy.  I recently had an article written in our United Cerebral Palsy Newsletter it is on page 2 under the "Learning the ABC's of IEP'S".  They asked me for a parents name to interview and this is the result.  (Names have been changed) I must say, I was very overwhelmed at the final result.  It is always a good thing to hear that the work you did was appreciated and worthwhile.  This was a happy ending, and one of the first families that I had ever worked with in a "job" capacity.  It felt good.  In fact, often when I leave meetings with parents that went well I get a RUSH of adrenaline.  I like it. 

Unfortunately they don't all go that well.  Surprisingly, most do, but recently I have had a really really tough one.  It is working with these tough circumstances that, if nothing else, make me take a look at our family and remember how darn lucky we are.  I know that.  But a nice reminder every so often doesn't hurt! 

It was after a particularly hard meeting that I went home, slightly in shock at what I had witnessed and began reflecting on the circumstances with Daniel.  What if Daniel was born to a different family?  What if he didn't have parents constantly fighting for him?  What if he was born to a family with no resources? What if he went to a school district that wasn't so supportive?  Where would he be?  If you put the exact same person into these different circumstances, what would happen?  Would he be in this same situation?  Would something within him persevere?  These questions tend to haunt me.  And during this week, it literally made my stomach hurt.  Part of it was the fact that I had had the toughest meeting to date.  The other part was that the day after this meeting I attended a student of the month ceremony at the middle school because Daniel was being honored.  That's right.  Daniel was STUDENT OF THE MONTH at his middle school.  He's in eighth grade, and doing so well!  I am so proud of him.  What an honor!  Daniel was nominated by his English teacher for always being kind to others, complimenting people (thank you speech teacher!) and always working his very hardest.  Which he does.  Every single day.  He earned it.  The best part was he was so proud of himself.  (He is never lacking in that department!) 

His dad and I went early to the middle school with him.  They had bagels and orange juice for the families gathered in the cozy, well stocked library.  There was a big crowd of parents and teachers who came in early (7:30 am) to observe.  A teacher read the letter written to nominate each student.  They each received a certificate from the school and one from our local senator and most importantly a gift certificate to Tasty Twist!  It fills my eyes with tears just thinking about it.  I was so very proud.  I know how hard he works each and every day, sometimes to just get through the day.  Even with all of the sensory overload and distractions, he still manages to buckle down and finish all of his homework in academic support, every day.  No one is making him do that.  In fact, at the open house at the beginning of the year, the teacher for that class said "they won't get all of their homework done in here", to which I could only think, "you don't know Daniel very well....yet".  He will bust his butt not to have to take anything home with him.  Natural consequences and his own reward system. 

But with all of that pride came a sadness thinking about this other child.  As I drove up to that school building I had a moment of wondering if google maps brought me to an old abandon building, only to realize, it hadn't. This was indeed the school.  I'm not naive.  I know what it's like out there.  But it was the huge contrast of that week that made me wonder and weep.  What if these children had switched places?  How would it all turn out?  I have had many dreams about it over the last few weeks.  It is something I will never know the answer to.  I can only be thankful for what we have been given and grateful that our work with Daniel (up to this point) has been successful and look forward that just maybe some of my work can help some more families out there.  I can't ask for much more than that. 

Monday, January 3, 2011

Keep Calm and Carry On

Well, it's been since AUGUST that I posted.  That seems like a long time ago.  I have had some very kind souls email me asking if everything is OK.  The short answer is yes.  I guess I just needed a break, and I was working more hours than ever before (with children), causing me to reprioritize (is that a word?) a bit. 

It isn't too surprising to know that a lot has gone on since August.  Anyone with children, not yet children on the spectrum will know that every day is an adventure, not yet 4 months.  So going back a bit, the summer was a little rough for Daniel.  His puberty was in full swing and (we believe) this, on top of his autism was/is causing him to self injure and occasionally, coming at myself and/or my husband.  It seemed to gradually increase throughout the summer.  Many have asked, "was it also due to the unscheduled summertime?"  Possibly.  That used to be a huge problem, but at some point he always adjusted and settled in to a summer routine of parks, pools and lakes.  This summer, he escalated.  In about August, I'd had enough.  Actually, my last post about our amazing experience with a successful tooth pulling. made me start looking at some of our choices a little closer.  I am referring to the fact that Daniel has never been on any sort of medication for anxiety. 

Medication is not my favorite thing, personally.  If there is a laundry list of side effects that will come from whatever it is, I will be that person in the .05% who will experience it.  It's just the way it is.  So I try my hardest to avoid it.  It's not always possible and I am not against it.  I do not judge those who choose the path of medication.  I think everyone should do what's best for them.  I just like to try everything else, first.  In our society where people want a magic pill for everything, I admittedly may have gone too far in the other direction.  I am slow, but eventually I'll see the light.  I believe what changed my mind was that one Valium Daniel took to go to his dental appointment.  He was so relaxed. It made me see how HARD it is for him.  Every day.  I know that, of course.  But after that I couldn't shake the feeling that I am making his life much more difficult by not looking into something to "take the edge off" and that it is possible for him to not be completely drugged out (my fear) and to just feel a bit less anxious every moment of his life. 

The other thing that happened was his social skills teacher,who he'd seen for years, came to me and said some parents of other kids in his group have said to her that their kids were becoming afraid of Daniel because he was escalating so much in group.  He never touched anyone, but his intensity was SO great, and sometimes he'd hit himself or the table etc.  Now, I would like to argue that in JUNE I TOLD her this was an inappropriate group for him.  The kids were too little.  I thought that was upsetting him.  He is used to being with kids his own age.  She had him with this group because of his language deficits.  I understand that.  But it wasn't working any longer.  I knew that and had talked to her about it.  Several times.  She asked for another chance to make it work.  Then came to me saying parents were calling her etc.  I didn't think it was very fair.  I told her I was going to start exploring some new avenues with Dr's and would get back to her when we had it worked out.  Well, it's pretty much worked out, but I'm not getting back with her yet.  Frankly, I'm sort of pissed that she didn't listen to me and things escalated to where they did. And I'm mad at myself for listening to her when I knew she was wrong.  So that is in a holding pattern.  I think he was due for a break anyway and the money saved hasn't made me upset either.....

So we went to our pediatrician and talked about Daniel hitting himself in the head or banging it.  Biting his hands HARD, and charging at us.  The fact that he is now 5'10" 198, (that is today, not in August, but you get the point) wasn't helping.  Zachary was scared of him.  It wasn't pretty.  Fast forward to being sent to a psychiatrist, I'll call Dr Q. We did the assessments, answered endless questions and filled out even longer questionnaires.  You know the drill.  I'll skip the details.  We decided to start mild.  He started with 5 mgs of Buspar once a day, at night.   About 4 weeks later we added 5 more mgs in the am and a few weeks ago added 5 more in mid afternoon.  As Daniel says "my pills make me less anxious".  And they do.  It is a pretty mild medication and it seems to be helping, A LOT.  I am happy to see that he is feeling more relaxed.  Some of his compulsiveness has eased up.  He is doing much better.  Oddly enough, none of this self injury had transferred to school.  He would work SO hard he would save it up for me.  A few things happened at school that he couldn't handle and it wasn't until he was alone with me that he came totally unglued.  For that I am thankful.  It doesn't always feel like a great thing when you are the person who it's being saved for, but it's nice to know you are the safety zone. 

Now we have been instructed by the psychiatrist to write down when he hits himself or bites (which has become his preferred thing).  My mother in law gave me a notebook in my stocking.   This is it. 

As my own little joke to myself, this is what I'm using to write down the self injury log.  It isn't a bad reminder, as you are writing down what led to your child beating his head with his fist, to take a deep breath, and carry on. 

So here we are.  I always knew this time would come.  Medication.  I also knew it would probably be during puberty.  He turned 14 this fall.  He is the same height as I am.  He is growing up.  I think this is one of the best decisions we have ever made.  I think I waited too long, but that is par for the course with me.  I can just be thankful that we took the steps we needed to for our family, and most of all, to help Daniel feel better about himself.  It's a new year.  Follow your gut and do what needs to be done. I'm glad to be back in blog land.  Keep Calm and Carry On!