Stifle

Those that follow us on Facebook know that a few months ago Liam was almost hospitalized. Thankfully he wasn't, but it was close.

Afterwards we got him in to see a child psychiatrist whom diagnosed him as Bipolar, ODD, OCD tendencies and Anxiety. All of this on top of Autism, ADHD, and SPD.

This was a very hard time for him, and for us as his parents. I still haven't let myself fully absorb the feelings associated with his depressive episode. I can't. I just can't.

Last night Liam was sitting on my lap, rare for him now that he is getting older. I was thinking about other families I know, who have recently had to hospitalize their autistic children. The flood of memories from Liam's episode became so grandiose I couldn't contain them.

These words were flowing through my mind, so I quickly typed them into my phone so I could remember them today.

Stifle

I stifle the feelings,
The memories, the thoughts.
I think of his courage.
How hard he had fought.

I couldn't give in.
I couldn't shed tears.
He needed my strength
To conquer his fears.

Feeling so helpless, useless, alone.
I shut down my mind.
My heart like a stone.

Still I stifle.
I push away the pain.
I bury the memories;
The heartbreak, the disdain.

I'm afraid to give in.
Afraid to feel.
I fear recurrence.
I fear he won't heal.

Just one little boy.
How much can he take?
How much can he bear?
How long til he breaks?

I stifle my breath.
I mutter a prayer.
I stifle the pain,
Layer by layer.

~Courtney B

My childhood therapist was right. It feels good to get that out. Even if it is in the form of poetry. The release is enlightening.
                                                              <3 <3 <3 <3
 

The Autism Life

Sometimes the Autism life is harder on me, than it is him.

When we got home from grocery shopping Liam couldn't wait to get back outside and "find friends." So much so, that he dumped the litter pan, and forgot to bring it in, because he saw "friends" walking by.

He came flying in, vibrating with excitement he yelled, "Momma, J and his cousin J are walking around. Can I go with them?" (they are 11 and 16, so I feel safe when Liam is with them.) I told him yes, and he beamed. He flew into his classroom/toy room, grabbed an old Halloween mask, slapped it on his face, kissed my cheek (twice as always) and flew out the front door.

I smiled to myself. Today seemed to be a good day. Though he was stimmy, talking a mile a minute, and ready to cry at the drop of a hat, the kids were accepting him. That makes it a great day.

Not 5 minutes later, Liam comes back in. Mask in hand, he yells, "Is A here?"  I reply, "No. Why?" He said, "Because J told me A was here for me, and I should come play with him. So I came home!"

I stopped putting away the canned goods and walked into the living room. I could feel my face turning red. My ears were on fire. Apparently J and J didn't want Liam and his silly mask walking with them, so they told him A was here looking for him. To get rid of him.

I said, "Liam, you saw A up the road helping the neighbors, so you knew he wasn't here. Did they not want to walk with you?"

My heart is racing, my anger is rising....

Liam, nonchalantly says, "well, maybe," and goes back to looking at his Magic cards.

I paused for a few moments. I was choking back my tears. Why can't kids accept that he is different? Why can't they accept that different is OKAY.

My voice wavering I say to Liam, "well, when J comes over later to play Magic cards with you, tell him to go play with someone else." (I am tired of my son being jilted, and only good enough when these kids are bored.)

Liam looks at me puzzled and says, "No, Momma!"

I reply, "well, then, what will you say?"

Liam says with a big grin, "I will say, LET'S PLAY J!"

The innocence crushes my heart. I choke on my anger.

You see, I am the one bothered by Liam being turned away. It didn't bother him. He didn't care. He is just happy when a kid seeks him out. That is how kind, and how gentle his heart is.

I AM BLIGHTING MY CHILD!!!!

I am trying to harden his heart to this cruel world, and it's not right.

In an effort to keep him from being hurt, I am intervening with what is right for me, NOT for him. He ISN'T a "typical" kid, and sometimes I lose sight of that.

We all make mistakes. None of us are perfect. We all only want what is best for our kiddos. Sometimes we don't always know what that is. Sometimes, we are wrong.

 <3 <3 <3 <3

The system is flawed.

This system is flawed. It's failing our children. Our children are sometimes in need of emergent care. It's NOT there for them. It's not fair. To them, or to the parents that care for them.

You see, last month, Liam hit rock bottom. I posted briefly about it, even blogged about in a round about way. (You can read that HERE.)

He had a regression of sorts. That's really the best word I can think to describe it. It started out of the blue. He came to us bawling. Told us his mind was telling him he might be gay, but he likes girls, so that can't be true. He was perseverating on this ideal, and he couldn't stop. He was crying, screaming, rocking, you get the idea.

His father and I tried to explain that it doesn't matter to us, or anyone in our family if he is heterosexual, or homosexual. He is still our boy. That didn't matter to him. Apparently some kid that was playing with Liam and a bunch of kids told Liam, "midgets are gay. and you're a midget, so you're gay."

Sounds stupid, I know, but to Liam, it wasn't. This then progressed. (Bear with me, this is hard to relive, and to actually type it is even worse.)

The next morning at 5 am, he awoke. He was sobbing and rocking uncontrollably. He told me that "because I am autistic, people think I am a killer. They said I will grow up to be a serial killer momma. I don't want to be that when I grow up. I'm not bad!"  He really said all this! This was stemming from the news stories on Adam Lanza months back. He heard it, and his mind tucked it away for a rainy day.

(**Note: When you are watching the news, you may think your kiddos aren't paying attention, but I assure you, THEY ARE. Take my advice, shelter them from the heartless media.)

So for DAYS, his mind was taking that story and twisting it about in his mind. He wasn't eating. Barely drinking. He was inconsolable. It didn't matter what we said, or what his therapists said. His mind was set that the world thinks he's a killer.

Now, I have to stop for a moment and thank his therapists and his former doctor from Youth Advocate Programs. They ALL went above and beyond their duties to not only help Liam, but his father and I. Really, they were there, all day, and into the evening checking in on us. I couldn't be more thankful to them all.
(Picture above was written by Liam, it reads "My Brane will not lev me olone." (my brain will not leave me alone.))
But, here is where the system falls apart. Your child is in crisis mode. What do you do? Well, it got bad enough, that we had to take him to the hospital. Sadly, they point blank told us, "We don't know what to do. We don't usually have to deal with this stuff." Say what? You see, they aren't trained to care for autistic people. They aren't trained in protocols to deal with these types of emergencies.

Again, thank god for YAP. Liam's MT met us at the hospital. She gave them the back story. She told them the protocol. So, another social worker was called in to give Liam an emergency evaluation. We actually knew her because Liam used to get services from that agency. Now pay attention, here is proof that the system is flawed.

Here were our options: Since he wasn't considered a danger to himself or us, he could go home. We could then call on Monday (this was a Friday afternoon) and get on a WAIT list for their child psychologist. But we were assured the wait was long~ MONTHS. OR, we could call another provider and get on their list. Our other option was to take him to the hospital in the next town over. That hospital has a psych center, but not for Peds. So, if they found him in need, they ship us via ambulance to a pediatric psych hospital that is TWO hours away from us.

Let that sink in a moment.... We have a psych center here, but NOTHING for children. So, do they think our kids aren't in need????

We made it through the weekend. He was eating calms tabs and valerian root like it was candy, to no avail. He couldn't stay off the toilet because his stomach was upset from his nerves, from not eating. Our hearts were being ripped from our chests. First thing Monday morning, I called the other service provider. YES, you read that right, I CALLED!

We were told it goes like this. You see the therapist that works for the Doctor, THREE times, THEN you can get on that Dr's wait list. WHAT???? What part of EMERGENCY ARE THEY MISSING HERE??? Now, I know my child isn't the only autistic kid in this area. I also know he isn't the only kid to need emergent care from time to time. So I didn't expect them to push other kids out to get mine in, but COME ON! This is the best they can do?

So we took it. Liam's BSC accompanied us to this appointment. We met with the woman. She was very nice. Liam was doing quite a bit better, but still in need of help soon. She told us that with all that was going on, she could push him up and waive the three appointments with her. We took it. We left feeling hopeful.

We got a call two days later (after we called them 5 times to find out the date of appt), her supervisor had approved the waiver and he was to see the psychiatrist on July 11th. A wait yes, but we had hope.

Now, the system is going to fail us again. We got a call from them last Wednesday. They had a cancellation for Thursday morning. I was ecstatic. We took it. I was on cloud 9! When I went to bed that night, I was jovial and excited. I felt that even though we were having problems, the system was actually working FOR us.

It wasn't. Neither was fate. Liam woke us up at 3 am that morning. Covered in vomit and tears. We were up with him ALL night. He was very sick. At 630 am his father said there was no way we could take him in there like that. He called the emergency cancellation number, told them Liam was sick and we wouldn't be in.

I was upset, but I knew July 11th wasn't too far away. Liam became more ill, so I was focused on that and not his upcoming appointment. On Saturday we got the mail, and there was a letter from the provider. They marked him an a no show, and he now has NO APPOINTMENT.

Excuse me, what???? It was a LONG weekend waiting until this morning to call.

This time, Pat called, he knew I was too angry to call, so he did. No wait for it, the system is screwing us again. This time, without vaseline so it's gonna hurt!

"Because you didn't give us a 24 hour notice, you were a no show. When we bumped you up, we gave him appointment on July 11th to someone else. The next appointment we have is August 11th."

Wait, WHAT????? So, because my child didn't get sick TWENTY FOUR HOURS BEFORE HIS APPOINTMENT, they marked him a no show. And, now he has to wait even longer for an appointment?

Where is the emergency in that????? Yes, he is doing better, but he NEEDS to be seen. He is still having moments where he can't get away from his mind. He is still taking Calms Tabs a few times a day. He is now having nightmares. He is now aggressive and nasty, or he will cry and have meltdowns for no apparent reason.

That doesn't matter to the system. This is how it works. It's like this EVERYWHERE! You hear stories of parents of severely autistic kids, and their cries for help going unanswered. I get it. WHILE I DON'T IN ANY WAY CONDONE THEM HARMING OR EVEN TAKING THEIR CHILD'S LIFE, I see what they mean when they say the system has failed them. Sadly, they are right.

The system is flawed. It's not prepared for our children. It's not developed for them. Something needs to change. Something needs to give.

SOMEONE NEEDS TO STEP UP AND HELP OUR CHILDREN.

A Lesson in Karma

kar·ma

noun

noun: karma

1. (in Hinduism and Buddhism) the sum of a person's actions in this and previous states of existence, viewed as deciding their fate in future existences.

   • informal

     destiny or fate, following as effect from cause.

   
   
2. Yesterday Liam got to see how Karma works. 

He and his dad were going to the tractor pulls down the road yesterday morning. He decided he wanted to take one of his friends, (A) whom sadly lost his dad a few years ago. So the three men went, and had a great time. Liam even spent $3 of his OWN money on me!!!! He bought me a home made candle.

Anyway, when they got back he asked friend if he wanted to stay and play. He said no. Liam was heartbroken. We distracted him with playing Magic the Gathering, and all seemed well.

Later in the afternoon, another kid came over. We will call him J. Liam played with him for about 30 minutes, and then became ornery.(since his last regression, attitude and aggression has been an issue.) So that boy went home. (can't blame him, and I told Liam that was because he was being rude.)

Liam then went over to A's house, and asked if he was ready to play with him yet. He told Liam, "no, I don't feel like playing with you, so go home." (seems Liam wasn't the only ornery kiddo yesterday!)

Liam came back over, head down, and upset. I told him that was karma. When J was over to play with him, he was being rude, so J went home. Karma bit his butt when he asked A to play and he didn't want too. Liam didn't quite grasp what I was saying. So I let it go, because I didn't want to bombard him anything negative. We have had enough of that lately....

Fast forward about an hour. We were eating dinner outside. A and J and other neighborhood kids were riding bikes. They didn't want Liam to join. (Like I said, he was being rude to J so I get it, but it still stings.) Next thing we know, one of the kids is screaming at A. Telling him to stop following them, they didn't want him to play. He continued to annoy them, and the one girl flung him down. Not cool, but kids are kids. A refrained from hitting her, but went inside crying. Liam started to laugh uncontrollably~ NOT COOL!!!!

Here was my chance to explain karma a bit better. I told Liam that was karma striking again. He didn't get it. I then went into more depth. I said, "here are two examples. First one: J came to play, you were rude. He got mad and went home and played with other kids.  Then the other kids didn't want to play with you. Karma kicked you in the rear because you were being rude. Secondly: This morning, you and daddy took A to the tractor pulls. Came home and he didn't want to play with you. Then he turned you down again. Next thing you see, the other kids are being mean to him, and don't want to play with him.  That is a prime example of karma. It means, you get what you give. So you better quit laughing or karma will bite you back!"

He looked at me, and said, "So if you are nice, you get nice? If you are mean, you get mean?" I wanted to tell him it's not like that ALL the time, but he has plenty of time to learn how cruel the world can be, and to let it jade him like the rest of us. He got the gist of it, stopped laughing, and I was happy. 

I am happy to report that today J forgave him, and now the two of them are happily playing together.

Society has failed us....

Society has failed us all....

Society deems what is "acceptable" in our world. It feeds the media whom then warps these thoughts into biased, fear based reports. This is unacceptable.

Society tells our children it's not okay to be curvy.

Society tells our children it's not okay to be Gay.

Society tells our children how they should look, speak, and act.

Society doesn't accept those that are different. Instead it shuns.

Society has a lot of nerve.

As a parent, this makes me sick. Because of society projecting all these things on to my child, I must undo the harm it has caused.

My child is autistic. He is vulnerable. Society has warped him into thinking he is bad, he is wrong, and he is different.

WHY??? Because he doesn't fit the standard?

Because he chooses to be himself and embrace it?

I have spent 8 years molding this boy into the child he is. To be proud of who he is, and what he is, and to not care what others think of him.

Then, in a 5 minute fluff piece on the news, society took that from him.

Because of their wild and inaccurate assumptions of mass killings, society told my child that because he is autistic, that makes him a murderer.

You see, autistic people have intense perseverations. They take something in life, and then they hyper focus on it. It's what they do.

So when my son heard the news anchor say that this killer was autistic, he internalized that into thinking that because he is autistic, that makes him a killer.

And then he perseverated... and perseverated..... and perseverated.

I can't explain to you the intensity of this situation. If you are in fact autistic, or care for someone who is, you know what I am saying.

If you're not, then the best way for me to explain it is, my son cried and rocked and screamed for DAYS. He didn't eat. He barely drank. No one really slept. All because society planted an idea into his mind.

Society has my son thinking that because he is autistic, people are afraid of him. That because he is neurologically different, he is hard wired to kill. HE IS EIGHT!!!

 It has him thinking that because he likes the color purple, and Frozen, that he is homosexual. He didn't even know what the word meant!!!! I had to explain it to him. Yet, he thought he was because society tells us that toys are gender specific.

I can say  that society needs to cut the crap. It needs to stop assuming it knows how people should be. It needs to realize that every word it utters, falls upon innocent ears. It needs to stop trying to fit our children into it's preformed molds.

I for one won't be watching the news any more. It's sad when something that is supposed to inform us, instead scares or belittles us or the ones we love. All in the name of "getting a story."

I will also continue to let my son be himself.  Encouraging him to soar. I will continue to not deem any toy gender specific. I will let him be a child.

This world makes us grow up too fast, and I for one refuse to let him lose his childhood.  All because of society and it's ignorant ideals.

*****************************************************************************

My Messy Beautiful Life....

  When I got the email invite from Momastery about this project, I knew I had to take part. I knew I would fight my brain, and figure out a way to get my words out, come Hell or high water!!!! You see, a very large part of my messy beautiful life is that I live with chronic illnesses. A lot of them....

 The Fibromyalgia causes horrible brain fog and memory problems to boot! I can't tell you what I ate yesterday, but I can tell you EVERY single teacher I had since kindergarten. (Useless info is what PITA calls it.) I also have chronic fatigue syndrome, Hashimotos disease, Endometriosis, Hemorrhagic Ovarian Cysts, and more.... I don't want to bore you with the details.

 The chronic pain can be debilitating some days, but I push on. I have to. I am a mom. Not just a "normal" mom, I'm an Autism mom!






 My son Liam (whom is the reason I started to blog in the first place) will be 8 in May, and he is autistic. He has taught me a lot in 8 years. I have grown in ways I never would have imagined. (especially in clothing sizes!) I have learned that no love compares to the love between a parent and a child. I have learned that I am a lot stronger than I thought I was. Even on my worsT days, when I can't seem to get off my chair, I am still an ass kicking momma!!!

 I have learned that public schools really aren't for everyone. I have learned that I make a pretty damn good special needs teacher. (There is no feeling like hearing your child read, and knowing that it was YOU that taught him that.) I have learned that I am a force to be reckoned with. (Just asK NEB.... that school really despises me, because of my advocating for my son.)

 I have learned that I don't care.

Now before anyone decides to go sanctimommy on that sentence, let me explain. I don't care what you, or you over there... or you hiding behind your computer, think of me. I have lost "friends" because I talk about Autism and how it impacts our life, a LOT. My world revolves around my son, and if people don't like that, it's their loss.  It doesn't matter to me.


What matters is what my son thinks of me. What matters is what I think of me.



  I have learned that even though this world is chock full of asshats.... that there is still a TON of AUSOME people left in the world. A lot of these people follow us on A Legion for Liam. A lot of these people I now call friends. I have never really "met" them. I don't need to. I KNOW them. They are good shit! And even though I don't like social functions, if some of these ladies wanted to get together, I would jump and scream at the chance! (I'm talking about you Housewives!!!) I have learned that family doesn't mean you are blood related! I have gained 6 sisters in the last year and I love them all!

 I have learned that my family is even more amazing than I thought they were. They have rallied around Liam since his diagnosis in 2010. They have supported, and learned, and understand Liam and Autism. It's amazing. They have also rallied around me. They support me, and my decisions about our life. They offer me guidance when I feel like hope is lost. In general, they ROCK!!!

 So I guess what I am getting at is this. Your life may be "messy." It may be difficult. It may royally suck sometimes. But bottom line, someone ALWAYS has it worse. So be thankful. Be glad that you have a "messy, beautiful life!"

For more #CarryOnWarrior posts, click  HERE.

Today I cried....

Today I cried... The silent, don't let him see you, kind of cry. Thinking about it now, I still want to cry. 

Earlier, an old friend of PITA's stopped in. (We will call him Mr. B) Liam saw that he had a knife on his pocket (like most men in this area do) and was so excited. He's a man's man. He loves to impress the men in his life. So he began the trek from living room to his room and back. He was dragging out all his "bug out bags," camping supplies, and so on.

He was so excited, he was virtually vibrating with energy.

He kept interrupting to get Mr. B's attention and show him each and EVERY thing.... There are a LOT of things! He is a collector of camping/outdoor gear.

<--- seriously though, who could resist this face???



Mr. B was so patient, and so kind. He gave Liam the utmost of his attention. I apologized for Liam's zealousness. He smiled, told me it was fine. I asked Liam to put his stuff away, and clean up his toys. He replied, "I just can't mama! I found another lover of bug out stuff!" And on he went... showing, explaining, pacing.

In that moment, my stomach knotted. Liam had no clue of what was he was doing. No clue that Mr. B really just wanted to visit with his dad. No clue, that he was monopolizing, interrupting, and in an innocent way, being a bit rude.

When Mr. B left and Liam was diligently putting away ALL of his stuff, I cried. Each time he walked into the room, I quick wiped away the tears, and smiled at him. I thanked him for doing such a great job cleaning up. We went about our day.

I spoke about this with PITA tonight. Asked him if he noticed as well. He smiled, and said he did. He commented on how Mr. B was so cool, and gave Liam his attention. Don't get me wrong, that is AWESOME! That makes my heart sing. But the fact that Liam had no clue of his actions broke my heart.
I can't explain why.

I am always so positive about autism, but I would be lying if I didn't say there are some days it gets me down. It punches me in the gut, and takes my breath away. I get up. I move on. He does, and so can I. For him <3