Lazy or numb...

  I have barely blogged in months. I can't quite decide if it's because I'm lazy or just numb. I say lazy because I am always so damn tired.  Keeping up with Liam, life, PAUSE, and the Legion has me mentally exhausted. Having a chronic illness sucks the life out you in so many ways. Too many to take the time to list. I have had to prioritize our life so much more in the past months. This means, that my blog has suffered the most because well, not that many people read it anyway. :)

  I started this blog as a way for me to vent. Apparently I was annoying people a few years ago, when I was using my facebook page (personal one) to talk about Autism. Now I could care less, but that is how this blog was born. I vent much less now. Sometimes I vent on ALFL or on RHoA if I am using my more colorful language. But the deep, heartfelt vents are few and far between lately. I think I am numb.

"My heart is broke
But I have some glue
Help me inhale
And mend it with you
We'll float around
And hang out on clouds
Then we'll come down
And have a hangover "

  I mean, of course I have a heart. Wouldn't be alive if I didn't. But I have been closing it off from the world a lot in the last six months, maybe even longer than that. I haven't been letting myself feel. I have become hard. I have become numb. Not because of anyone or any one thing, in particular. Because I am tired. I am fed up. I am afraid that if I let myself feel, I will lose it. I will lock myself in a room and I will ugly cry. Probably for days. Let's face it: "Ain't Nobody Got Time For Dat!"

"Sit in the sun
Fall asleep
Wish away
soul is cheap
Lesson learned
Wish me luck
Soothe the burn
Wake me up"

  I don't want to feel that pain. I don't want to cry. I want to keep it inside and ignore it. It has nothing to do with Liam. Or Autism. It has everything to do with myself. My constant pain and fatigue. Being broke and knowing there is not a damn thing I myself, can do about it. It's about realizing that yep, our life is hard as hell sometimes, but who am I to whine. There are people out there who have it a hell of a lot worse. We have a home. We have a family. We have love. There are people who have NONE of that. So I chose to suck it up, and keep on, keeping on.

"I'm not like them
But I can pretend
The sun is gone,
But I have a light
the day is done,
I'm having fun
I think I'm dumb
Or Maybe just happy"
  I sometimes feel I shouldn't refer to myself as a "blogger," let alone a "writer," because I barely do either. But dammit, I like the sound of that so much more than "disabled,"  "housewife," "maid," and so on.  No, I didn't go to college. I graduated high school, got married, made a ton of mistakes, taught myself how to tattoo and then after YEARS of hard work I became a tattoo artist. I can't even do that any more because I can't sit in one place that long. I can't bend hardly at all. My hands go numb after holding my machine for longer than 10 minutes. I can't draw anymore either and I LOVED to paint and draw. So, being on my laptop and writing or creating digital art is the only creativity I am left with any more. God, would you believe I am 34 and not 74!!! (I feel the latter though.)

  So for all this and more, I am now going to refer to myself as "A Lazy, Numb, Sometimes Blogger..." Because at least that way I am being truthful ;)

"Think I'm just happy ,
Think I'm just happy ,
Think I'm just happy ."

                                                                  <3 <3 <3 <3

Song Lyrics belong to Nirvana, written by Kurt Cobain

First Day Jitters....

  As I see pics of friends' kiddos heading back to school, and I hear about little ones starting kindergarten, I am so happy for them. Yet, for me, it makes me queasy.

You can't tell, but I was scared to death to let him go. (2010)

I remember the tears and the fear in Liam and myself that first day. It was rainy and dreary. My friend brought her kiddos over to wait with Liam for the bus. He was so excited. He danced all over the deck. When he got on the bus, I saw him put his brave face on. I watched as he choked back tears. I too did the same, because I didn't want my baby to see my fear.

Look how happy he was!!! (2010)

He rushed to get on the bus as he fought back his tears (2010)

   I remember waiting impatiently for him to get off the bus. I remember the look in his eyes when he did. I remember how he didn't speak, refused to eat, stared blankly around the room. My heart sinks, I want to vomit.

  He endured school for 4 days. He was placed in the hallway when he couldn't handle the class, the noises, the smells, and so on. At no time was I told. I emailed his teacher on day two. Asked her how it went. Asked her why his shirt was all stretched out around the neck. Why it was soaked. She told me,  "he misses you, that is all." At no time did she tell me he was spending his days in the hall. At no time did she tell me he vomited in the cafeteria and was sent to the nurse. He was sent out of gym, music and art, and only was able to tolerate the library.

  I am sickened. My child was treated like an unwanted animal, and I was none the wiser. I cry, a lot. When I see that teacher in public it is all I can do to refrain from mauling her. My son is terrified of her. He refuses to step foot in schools. He has a hard time coloring because he always remembers how she yelled at him and mocked him in front of a class full of strange kids. Just because he couldn't color in the lines.

   I know I made the right decision to pull him from that hellacious school. It was an easy choice to pull him, but a huge decision to take over his education myself. It has been hard being his teacher and there are days I get so upset, I do raise my voice. I am not perfect, and I will never claim to be. I have learned to walk away, and take a few breaths, and he is learning to do the same. We are learning together.

  I am watching my son flourish. When he aces math with no issues, he beams with pride. When he reads to me (a story of his choosing) he is all smiles. Inside, I am exploding with pride because I taught him that.

   I jest about the choice to home school, because it isn't easy. It's not for the faint of heart. It's not for everyone. For us, it was the only choice, the only way. When people ask me if Liam will ever return to brick and mortar school, I say I hope so. But do I???? Not really. It makes me sick to think about it. It makes him freak out to talk about it. Sure I would love a few hours of peace. But not at the price of my son. He didn't deserve the way he was treated at Northeast Bradford, and I can't and won't make him go through that again. When and if HE decides he wants to try, I will do my best to pave the way for him. Until then, we home school!

Look how happy he is in his personal class room! (this was his first day of school last year) he was counting ALOUD (which means yelling, bc he is so very literal. ( Blurred bc he does school in his underpants!)

♥♥♥♥

Just Because He Speaks....

  Just because he speaks, that doesn't mean our life is an easier. It doesn't always make our life a cake walk. Just because he can speak to me, doesn't mean he can verbalize what he feels. Anger, sadness, and sometimes even happiness can't be verbally expressed by my son. Yeah, of course I can see it on his face, with a smile, or a frown. But if I ask him why he is sad or mad, he can't always express to me why. He can't seem to find the words.

  When he is sick, he can't tell me what's wrong. As a mother, I can look at him and tell when he is sick. I can see it as he is coming down with it. It's a mix of a foggy look in his eyes, to extreme behaviors that he displays. But ask him what hurts, or what feels gross and he can't tell you. His ear drums have perforated and blood has run out of his ears before and he told me he felt fine. It really makes you feel like a POS parent when you take your child  to his ped with blood and pus running out of his ear. Thank God he knows Liam has ASD, and he also knows I am a worry wart mother, so he knows it's not neglect.

  When someone upsets him, not anger wise, but sadness wise, and you ask him why he is sad, he can't tell you. All he will say is, "I'm sad, but my brain can't say why." It's as if it's that word on the tip of your tongue, that you just can't get out. My son suffered a near nervous breakdown almost 3 years ago because of a situation with another child. A situation that happened in a matter of a few moments. A situation I knew nothing about. It took Liam over a year to find those words, and they didn't even come out as words at first. He started crying uncontrollably, a blank, empty stare on his gorgeous, cherub like face. Rocking and head banging non stop and moaning. It took us days to get him to say what had happened. Needless to say it was heartbreaking. The situation was worsened by his Dr. trying him on Tenex at that time, which sent him into even more of a downward spiral. To see your 4 year old on the verge on being admitted to a mental hospital is the scariest thing in the world!

  So you see, just because my son is verbal, just because he has a high vocabulary and understanding of large words, doesn't mean he can express himself any better than a child who hasn't found their words yet.....

 Yet, there are some parents out there that assume that because our children are verbal, that our struggles are not hard. ASD presents itself differently in every child. What comes easy to one, is a struggle for another. The severity of our child's behaviors shouldn't be up for judgement. They should all be accepted and equally embraced. Isn't that what all of us are fighting for? Together, as a united force we are unstoppable. Please don't let the severity of ASD's separate us all. Let ASD bring us together!

Don't let this separate us....we're all in this together <3

                                                                        ♥ ♥ ♥ ♥

To eradicate or not to eradicate....

 TRIGGER WARNING~ talk of cure/not to cure as it relates to local autism group and their mission statement. If this may offend you, don't read any further....

 So, I know the topic of to cure or not to cure is always a heated discussion. I used to seethe with rage when people would even suggest the topic to me. However, I have learned that I am not always right. Wait, I said that??? :)

  Some kids are severely autistic. They are not only non verbal, but also super aggressive and need constant care. So for their parents, it's their right to choose cure/no cure. Who am I to say what is right for that family, or that child/adult.

  I try to always put myself in someone else's shoes. To not live life in my little bubble. To realize that my opinion isn't always the only one. To always take someone else's feelings into consideration.

  That being said, it was brought to my attention that a local autism group had a controversial mission statement. It reads like this: "It is our vision to see the condition of Autism eradicated in our lifetime." SAY WHAT???? You want to see my son eradicated? Autism is a part of who he is. It is why he is quirky. I love those quirks!

  You are an autism group. The only one in this small area. How can you have a mission statement like that? Shouldn't you be in the happy medium? To me, that statement has no business being on your home page, for all to see..... Our family will not be participating in their walk this year because of this statement.  Our family raised almost $600 for this group last year. Had I known they wanted autism eradicated, I wouldn't have wasted our time.

  Granted, they did give our son a grant so we could get him some therapy items last year. That was AUSOME and we were totally grateful for that. (that too was before I saw what their mission statement was.) But it burns me to my core to read their statement. As I said, I know we all feel differently, but as a group, they need to take the middle ground.....Am I right or wrong?

  Liam has asked why we aren't participating. I told him why. I don't lie to my son. He wrinkled his nose. He asked me what eradicate meant. I told him. He said, "but it's my super power!" I told him I know this. He had a funny look on his face. One of hurt. It hurt my son that YOU (unnamed group) want his Autism eradicated. Doesn't that bother you? Hasn't it occurred to you that you may be excluding all the people that embrace autism, from your cliquey little group? We don't all feel the same way, and everyone has a right to their feelings, but by making such a statement, you are in fact alienating those that feel differently. And as a "group" it is my understanding that you should take the feelings of ALL into consideration.

  A great example of this is another semi local autism group. This one out of Wilkes Barre Pa. Their mission statement reads as follows: S.A.F.E., Inc. is a 501c3 non-profit organization supporting families affected by 

Autism Spectrum Disorders (ASD). Our membership is comprised of individuals with ASD and those who love them. We 

provide members, families, caretakers and professionals with support and information pertaining to the latest interventions and 

educational practices, therapies, and available programs for individuals with ASD. We also provide opportunities for those 

living with ASD to overcome social barriers, enjoying group and leisure activities in the community. Our goal is to help people 

with autism live full and independent lives.

  

  Now to me, that is a mission statement. Do you see how they left their personal feelings out of it? Am I right or 

wrong when I say that is how a support group should be? I know it bothered others on my personal page when I 

first posted about not taking part in the walk and why. So I know this will probably bother them too. For that I am 

sorry. I don't like to bother people or hurt their feelings. With that being said, I can't stand behind a group that   

disregards others feelings. (not just mine, Pita's or my son's, but others in the same community we are to be 

supporting.) If this is wrong, then I don't want to be right.....

                                                                        ♥♥♥♥