Thursday, August 11, 2011

and a sign from above.....

saw this at work today:

Humility is the ability to wait my turn to speak during a heated discussion, to be at peace when others surpass me in talents and accomplishments, realizing that all good things come from God, to listen with a spirit of objectivity, rather than an “I know it all” attitude, to be content with what I am, but confident that His grace can make me better, to be obedient to those in authority without resentment, to be available to everyone at all times knowing He will make up for what I lack, the desire to please rather than be pleased, and most of all, humility is to believe His revelations, hope in His word, and love Him more than myself- Mother Angelica. 

hmmm.  I think the universe is trying to teach me something from yesterday's posting.  I'm still glad I said something, but these are good words to think about too.  

Wednesday, August 10, 2011

on occasionally finding help from an unsavory ally

so someone posted on Facebook tonight that she thought giving children Benadryl occasionally to help them sleep was child abuse.   Many years ago, someone told me that if I was very angry, to write a letter, and if I still felt exactly the same way in the morning, I could mail it.    

so this is my letter (pardon the lower case, etc.  i was typing quickly trying to not let the words run out of my head)  


Normally I try not to respond to things like this...because upset heads don't tend to come off as rational or clear thinking or even intelligent sometimes.  this has been bothering me since you posted it.  i imagine i'll come off as over-reacting, but i hope after reading you can understand why i felt i needed to say something.  i've seen child abuse as an EMT so i'm not ignorant of what happens to far too many kids.  i also agree many parents do give things in an attempt to make their lives easier, but i must say this:  if a parent is sleep deprived to the point of extreme where they can barely make rational decisions, sick as a dog themselves, and have to be the sole person responsible for a young person who won't stop screaming for two days for no known reason, and you just don't know what to do anymore and if your choices are to a) give them benadryl to hopefully relax them so they might, just might fall asleep for more than 5 minute stretches, or b) can't stay strong any longer, which are you going to choose or even recommend to a patient?   run on sentence....but you get the point.   this scenario happens all over the world, every single day.  it's just that it's never happened to you and perhaps that's why you are so cavalier about it. 

its worth at least trying to understand the shoes they walk in before passing judgement so cold as "child abuse".  because i've done this-at least one time, possibly more.  i have given benadryl to relax my child instead of loosing my mind  and i'm a damn good mom.  I'm not perfect and i admit that freely, but i STRONGLY resent the implication that you think i "might" abuse my child.  i resent it so strongly that i was compelled to say something instead of staying quiet.  It's not a funny thing to joke about, or something to make light of at all.  You might not have meant to, but your comment would lump me into a group with people who beat their kids to a bloody pulp, or lock their children in cages, or deny them food til they starve to death because i've made choices at difficult times that help me and my child.  the number 1 worst part of being a parent is how much everyone judges the job you are doing.

but  if, to any reader of this, it appears i'm mentally unstable or something is wrong with me because i've been in the situation of making hard choices like giving him something to help him relax or even sleep before i completely break when i've been up for 3 days straight taking care of my autistic child or been in the scenario above, it's clear that reader has never been in either situation.  which, honestly, i'm glad for them.  parenting any child, healthy, sick, or in between, is hard-  harder than any other job on the planet.  i admit some can't take the pressure, and do end up seriously hurting their children, which is a horrific crime and must be stopped.  again, i acknowledge some abuse benadryl, because they are not making good choices (though one must wonder why it is they can not make good choices...are they exhausted?  struggling with undiagnosed mental illness?  have no help?  there's a story behind every person).  that being said, i disagree that giving a child benadryl on very rare occasions "might be child abuse", because sometimes, in cases like my life, and others like mine, the greater good for the child by considering the parent's overall mental health in that moment must be a factor in the decision.

Regardless of my beliefs on this, i know that the constant judging of parenting techniques is endless and excruciating and must also be stopped.  i am not in the same category as those others i mentioned because i needed my son to relax one time or another.  the point of this long winded response is simply this:  your comment may have seemed harmless to you, but was in fact hurtful and judgmental to me and anyone else who has ever been in shoes like mine, or worse yet, heavier ones.  many have done what i have done, but few will be honest about it because they fear being labeled a bad parent or awful person, or even, dare i say it- a child abuser.  but i am not a child abuser.  I  am not even close to "might" be committing child abuse.  what i am is a parent who has made occasional choices that were not  in regards to the care of my child that you don't agree with.  that's a really big difference. 

you don't have to respond to this comment, and you don't even have to change your belief about the use of benadryl being wrong if you don't want to.  but simply know this:  we don't have to agree all the time on everything.  but we do have to acknowledge that our journeys are not all the same.   

Wednesday, July 13, 2011

We're almost there!

Ok, the truck is booked...the lease is in my email in-box to review and sign, and send the check in....

I've coordinated help with loading and unloading the truck.  I've mentally planned out the layout of the new place.

I've interviewed two daycare providers over the phone, and made plans to go see the house.  Have to call the state and check on their licenses still. 

I faxed the 20 page IEP over, with a note saying we really need to have a PPT, before they just bring it over the same automatically. 

I called the developmental pedi in CT our MA pedi wants us to transfer to.  (10 month waiting list...not that bad actually!!) 

My last day at work is Friday...we move next Saturday.   Somewhere in between I need to pack everything, find time to drive down to CT and become a legal resident (get my license, etc, so we can be enrolled in the schools- did you ever notice that when you are trying to become a resident, the things you must show are the things you are trying to do...ie: in order to get a license, you need proof you live there. you can use school enrollment forms I was helpfully told.  except i can't enroll him in school until i have a license.  what genius came up with that plan?) 

Since we are going to the same general area we were before, I've already got an audiologist lined up...I've got a general pedi...I've got an ENT....we're working our way into the developmental and maybe the Autism Clinic at the major city hospital nearby.....

what am I forgetting? 

Tuesday, July 5, 2011

if this weekend were an episode of Dora....

......We'd be singing the "We Did It"  song!!!

We went to Horseneck Beach on the 4th of July!

I know, crazy, right?  The hands down busiest day of the year at an enormous beach, and I decide to take my son?    But something just kept bugging me that I needed to do it.   It's where my dad used to take my siblings and I when we were little.  

(Side story:  I once had to be "rescued" after my sister and I dared each other to see who could go out the furthest.  The issue with this beach is, you can keep going and going and going, and it really doesn't get much deeper.  There really isn't a drop-off.  Suddenly you are out SUPER far, and you're only up to your chin.   But the current is STRONG!!!!   The rip tide and undertow are so strong that it takes a combination of sheer brutal strength and mental focus to get back in if you are out too far.  The lifeguards on this beach are no joke...they are STRONG!   I was actually doing just fine....I learned from years of swimming that if you get a bit too far out here, pace yourself, do not go at a straight angle to get back to the beach, but rather aim somewhere off to the right, and don't freak out.  All very important to remember, and I was doing all three.  Suddenly, in the midst of one of my calm strokes, someone picked me up!!!!!   Freaked the living daylights out of me!!!  Apparently the lifeguards decided my slow and steady approach was too slow and steady, and they thought I was in distress.   I was probably about 12 at the time, so I can see why they worried.   But we were incredibly strong swimmers (all on the swim team for years and lots of experience with this particular current) and the funny part was my dad wasn't even worried about me.  But again, they do know the beach, so we thanked them for their help, and dad made me stay in water no further than my knees for the rest of the day.   I think that's the gist of my side story). 

So taking my guy to a beach full of people, and tons of extra sensory input the day before summer session of school started?   Why I got this into my head I'll never know...but off we went!

We had been once in April.  I took him there when it was deserted so he could have a social story about the beach.  We took pictures, brought sand toys, the whole works.  It just happened that it was only 60 degrees that gorgeous spring day, and the place was deserted.  But it worked out, because he was prepared to go again! 

We got a spot that was as far from the water as possible (his choice) and settled in.  He was nervous, so asked for his snack, ate a bite, put it back in the bag, played for a minute, asked for the snack, again and again.  I just kept calm, and gave him what he needed.   Then we talked about getting water to make mud for the trucks we brought.   Took us about 5 times of starting down to the water, then going back to the blanket before we finally made it to the water so I could fill the bucket.  And then:  heaven!  He LOVED the sand- which blew me away!   We wore sand shoes, of course, and that might have helped.  It wasn't too hot on the soles of his feet, the rocks weren't that bumpy, whatever.   On top of that, when we went down for the bucket again, slowly but surely, he put his toes in the water!!!!!!!!!!!!!   Then went in to his ankles.  Then to his KNEES!!!!!!!!!!!!!!!!!  He got the best grin on his face- he was so proud of himself, and yet having so much fun!!!!!!!!!!!!!!

When he was done, we went back to the blanket for another snack (overcoming fears is hungry work, dontcha know?)  and he played with sand toys again.  independantly.  No need to call my name constantly to make sure I was still there sitting next to him.  No insistance I play with him, but then control the whole play scenario.  No stress over the people who sat down near us and started a radio.  he actually DANCED to the music instead of getting upset about it.  

And then came the kicker.  By this point, I was almost in tears.  The entire experience was such a blessing- especially after the awful week we've had.  So as incentive, I had told him we would go for ice cream when he was done at the beach.  There's a stand on Route 88 that has that homemade ice cream and clam cakes (yum!!!  will miss those when I get to CT...12 years in Fairfield County, and I never saw them anywhere there!)  So we walk down the boardwalk, hit the potty on our way out, and then walk past the outdoor showers.   Seeing other kids there, he was curious, so I showed him how you can hit the button and wash off the sand.  He HATES showers.  Is terrified of them, to the point that if it drips when he's in the bath, he shoots out of the  bathtub like a rocket!!!!!!!!!!!!!!!!!!   But he was good with the foot shower, and got a huge kick out of it.  Since there wasn't anyone else using them after the other kids left, I let him play with the showers.  And then he accidentally hit the overhead shower button.  Prepared for a meltdown, I dropped the bags on a nearby bench, and started over.  And do you know what he did?  He LAUGHED and hit it again!  and again!  and again!!!   

I needed this weekend.  I needed it so badly.   And he did too.  He is so incredibly proud of himself!!!!!!  He had a rough night, but I think that was more about school starting again with a different teacher and different time than anything to do with the beach trip. 

We did it!!!!!!!!!

Monday, June 27, 2011

It's time to trust my instincts...close my eyes and leap....

oh gulp!

We are moving back to Connecticut.   Sorry Massachusetts.  You've got some great things going for you, but Southeastern MA is not working for us.  Driving to Waltham or Needham is getting to be old.  An hour and a half each way for a doc's visit, plus waiting room time, all for 10 minutes of a doc's time....I can't do it any longer.  Where we were had closer healthcare.  Still the wait times, etc, but at least a bit closer. 

I had the opportunity for a job, and I took it.  The pay will be enough to get me through, the potential for growth is there, the work/life balance understanding is there, and while I'm terrified out of my mind, I'm doing it.  Because the town has an amazing special ed program....they are supportive, informed, involved and these are just the parents in the special ed PTA!

I put a deposit down on a cute apartment in a safe quiet neighborhood that is across the street from a playground that costs far to much each month, but I will make it happen because he will be safe and happy there.   Of course, we will have the heat on crazy low all winter, but we've got lots of home-made with love wool socks and sweaters :)   I'm also clearly going to have to get in touch with couponing again.  But not to the extreme like those shows.  Those people scare me a tiny bit!!!  :)

I keep waiting for the other shoe to drop.  I keep waiting for them to call me and say they've changed their mind, they don't want me...or they can't afford the salary they said.  Or something else to go very VERY wrong. 

I also keep praying I made the right choice, because moving an autistic kid 200 miles is not easy.  All new things are so hard for him!!!!!!!!!!!   I have to be sure this is right for him in the long run, or else I wouldn't do it.  And I'm sure.  At least, I think I'm sure.  Uhhhhh.     No I'm sure, I'm just scared right now.  Really scared.

Endings are sad.  Beginnings are scary.  Just give hope a chance to float up. 

Friday, June 17, 2011

Father's Day

My dad died 10 years ago this past October. 

Every year I miss him more.  He would have been an amazing role model for my son, but it was because he wasn't here that I had my son. 

I believe everything happens for a reason, and that sometimes it takes years to see that reason.  When my dad passed away suddenly, we inherited his life insurance from the Army.  He was still active in the Reserves....had been for 25 years.  That was after two tours of Vietnam with the Air Force.  He got out of the Air Force and decided to try something new....so he joined the Army Reserve.   In between, he went to some Vietnam War protests.  Classic Dad.

Without that life insurance money, I wouldn't have been able to afford staying in Connecticut after I graduated from college.  Hey Dad?  Thanks for the free college.  I'd have rather had you, but if I couldn't, being able to set out on my own and make my way in the world debt free was an amazing gift. 

Because I was able to set out on my own, I started finding my own way, and found my way into a volunteer EMT gig.   After a few years in that gig, I met a man who would become my husband, and the father of my beautiful son.  We are divorced now, but still....we have a wonderful little boy who happens to have autism and is hard of hearing.  But if I had never been married, if I had never met my ex, if I hadn't had the means to be in CT after college, I wouldn't have been a Mom. 

So this Father's Day, I would like to honor my Dad for making me a Mom.  You have given me no greater gift than my son.  I'm trying to raise him the way you and Mom raised me...I hope I'm making you proud. 

Monday, June 13, 2011

I wish...

I read fantastic other blogs from moms, and feel quite inadequate! 

I wish I had the words they did.   I wish I could describe clearly for people the joy I have when I think of my son.  His laughter and energy light up my life.  His victories are sweet, and hard earned.  He loves trucks.  He is  starting to really enjoy dinosaurs.   He likes to tell knock knock jokes.  He doesn't like to be left alone.  He doesn't like it when I leave him.  He LOVES school!  He loves to do arts and crafts, and wields a gluestick like a pro :)  

He is amazing.  I want to spend every day with him. 

But I can't.   In order to provide for him, I've GOT to be at work.  Which makes me feel terrible.  And causes some more stress, because being at all his appointments and juggling work...well...it's not easy.   Do you know, I actually went to Autism Speaks' website...I'm a professional fundraiser for non-profits...wouldn't it be great to work at a place that "gets" it?  Sigh, couldn't find anything.   Sadly, non-profit pay isn't enough to really live on anyway, which is some of the problem!  :) 

I go through ups and downs like everyone.  But today is a bad day.  Today I'm in a dark place, that's very very tired.  Today I wish I could close my eyes and sleep for a month.  Today I can't pay attention at work.  Today I'm dragging myself through the motions.   Hopefully tomorrow is another day. 

But the point was....if you check out some of the other blogs I listed below, those folks have an amazing gift of words, and I have learned so much from them.  I have learned that I am NOT alone!  I have learned that there are groups of us who care about each other, and will offer shoulders and warm words of support.  I may not be deeply involved in those blogs yet (uh, does anyone even READ this blog?) but I know it's there, and I'm glad it's there.   Because today, in my dark hour, it's nice to have someone else who gets it...even if they aren't in the office next door.