Thursday, August 29, 2013


In the heat of my blubbering and the pity party I threw myself yesterday, I also threw Daddy Ernie and Mommy Dana under the bus.  I have changed the previous post to still address my concerns, but hopefully without sounding like I'm placing the blame on anyone.

Daddy Ernie - you were a kid and yet you took the responsibility - and continue to take responsibility -as Alex's birth father!  You are a kind, caring man and we are so lucky to have you and your family in our lives!  I'm grateful for our relationship and hope I didn't hurt your feelings too badly.  It was out of selfishness and I am so sorry.  And I also know that you pray constantly for Alex and think of him often, as he does with you and your family.  You are a great father, and we thank you for sharing Alex and the rest of the clan with us.

Mommy Dana - it's been a long time since we have seen you, but I want you to know you are always welcome to be a part of Alex's life when you are ready.  What I wrote earlier came across as rude towards you and I did not intend for it to.  I was frustrated, but that's no excuse and I am so sorry.  We pray for you always and Alex knows how amazing you are, because we tell him constantly that only an amazing person could share their little boy.  And just look at your 2 kids!  Wow!  Thank you!

Wednesday, August 28, 2013

I need a Fluffy, a stiff drink, or a good cry

Or maybe I need all 3!

This is a picture of a Fluffy.  Yes.  I know this is really Winnie the Pooh, but according to M his name is Fluffy.  And obviously since I'm having to hold him sitting up while taking his picture his name didn't come from the fluff and stuff inside of him.  Nope. It's because as she's falling asleep, M "fluffs" his nose with her thumb.  (That's the technical term for rubbing his nose.) 

There's only 1 Fluffy and he's M's, I don't drink, stiff or otherwise and I have had a couple of good cries lately, but sometimes you just need to scream if nothing is left!  Hence, the new post!  Instead of screaming I'm going to vent through the blog sphere.  Again.

You know, it's not even that bad of a thing.  I know of others who are living trials right now much harder than mine.  Heck, I've had much harder trials than I am going through right now.  But OOOOOO.  Sometimes being the mother of a child with special needs is so hard.  And I've been feeling that stress lately.

Right before school started I wrote his teacher an e-mail and vented;  I'm a pretty strict mom, and when I say "If you don't stop doing that I will ___________", then __________ will happen!  But this obstinate child of mine hasn't figured out that I mean business.  We set up an appointment to talk, and after she assured me that part of the problem is hormones (a 16 year old going on 3 isn't a good mix!) then she agreed with me that there is something more neurological going on.  She has seen the anger - for no good reason really - and how hard he fights that emotion.  It really is a CAN'T stop more than a DON'T WANT TO stop when he gets in that mode.  It's hard to watch.  He knows right from wrong.  He knows what is appropriate and what isn't.  And, yes, he knows how to push my buttons.  But honestly, that's not it!  I know when he (or most other children for that matter) is testing me or trying to get my attention, and this just isn't that.

I TRULY believe there is something more happening in his little body.  And I'm OK with it.  But when I talk to the doctors and I get nothing - no, worse than nothing - I get poo-pooed about it, I get so frustrated.

I e-mailed his docs just to see if there IS any actual studies done that would validate my feelings, or could help us know what else we need to do to help Alex, and in that e-mail I told a story of something that happened at school.  I'm sure I've blogged about this, but I will re-tell the story to jog the memory;  he had been off of one of his ADHD meds for 36 hours because of an insurance snafu and all of a sudden at school he zoned out.  Way out!  His teacher asked him if he was OK, to which he answered, "NO!" and ran out of the door.  It took 2 teachers and a police officer to catch him and bring him back to the class.  While his teacher calmed him, he kept saying to her, "That was so scary!"  "I was scared!"   And she said you could see the fear in his eyes.  And when he was finally calmed down a bit he looked at her and said, "I need a smoke."

For those who don't know, no one in our house smokes.  No one in our immediate family smokes.  Actually, no one in the neighborhood does, as least in Alex's line of vision.  But there are times in his life that he is obsessed - and I'm not using that word to make a statement - he truly is obsessed with smoking.  He has followed people to watch them smoke.  He will stand by an outdoor ashtray and count the cigarettes.  Once when we went camping he spent over 2 hours looking through the ashes in the fire pit because the person before us had obviously smoked and put the butts in the fire pit and you would have thought he found a pirate's treasure!  This doesn't happen all the time.  I wish I had been a bit more observant as to when he has gone through this obsession, but it's such a strong need for him that he has actually taken one of his K'nex sticks and put it in and out of his mouth like he would a cigarette.  Now this is where I got poo-pooed.  The doc says, and has said before, that he thinks Alex is just doing it to get attention.  That I need to stop making such a big deal out of it.  I think the doc thinks I'm this little Molly Mormon who doesn't want my child doing anything to embarrass me in front of all my Molly Mormon friends.  What he doesn't get - even thought I have told him this - is I HAVEN'T made a big deal out of this.  When he would smoke his K'nex I just asked him to please go outside to smoke so the house didn't stink, and then asked him to shower when he was done.  There have been times he has spent an hour on the back porch smoking!  And what other mom would let their child poke through a fire pit for 2 hours?  He's not getting extra attention from me, but these are things I would ask any family member to do in my house if they smoked.  I'm not just going to let him "smoke" and act like he's reading a book!  If he was picking his nose constantly I would at least take his hand out of his nose because it's offensive! 

But the smoking was just an example I gave about his obsessions.  He also obsesses about matches and guns.  Yeah - all great things for someone to want so badly it could kill them and /or others in the process!  What I'm really frustrated with is I'm not being taken seriously.  I feel like I'm getting a bad reputation as a complaining mother when in actuality, I could complain a whole lot more than I do!  And maybe that's what I need to do.  You know, the squeaky wheel gets the grease.  But that's not me.  I'm trying so hard to look at the positive side of things, that to complain will only highlight things that are bothersome.

OK.           I need to know some answers!  And is it too much to ask for answers without judging me?  A simple 'yes' or 'no' would suffice!

I think I'm feeling overwhelmed with this because EVERYTHING with and for Alex is a fight.  Anything I ask of him I get a negative answer.  I could ask him to play a video game - something he would do 24/7 if I let him- and I would get some sort of snide remark from him.  At church I have been kind of pushed to the side so that Mike can answer their questions...  I'M THE ONE WHO DOES EVERYTHING FOR HIM!  I'M THE ONE WHO KNOWS WHAT HE CAN AND CANNOT DO!  Sure, Mike can probably answer the questions, but I can promise he more than likely will ask my opinion first because he knows I'm the one who truly knows the answer!!!

 And then I have been filling out the forms for SSI.  OH. MY. GOSH! How many times do you have to answer the same question?  They want so many details I'm worried they are next going to ask when I last had a bowel movement!

I just wish that people could see in my heart and understand all I want is what is best for my boy.  All I want is for him to be happy, comfortable and confident.  Is that too much to ask???