Don't Use "Crazy" as an Adjective

    Our tv is tuned to the Disney channel, 24/7. I love how they keep with the times, but keep the programming wholesome. However, when my son quickly changed the channel the other evening, my heart sank.

    We were watching Dog with a Blog. The son Tyler called someone "crazy." I know, people say that all the time, but here I am, with an autistic son, whom also has bipolar disorder. He is currently in a severe depressive cycle, and very sensitive. To hear this term used as a joke really bothered him. I used this to get him to open up to me.

   "Why did you change it? I asked. "Because Tyler said crazy. I don't like that momma. Do people think that I'm crazy?"

    So now you see why it upset us. When I was growing up, kids called everything "gay." If something was stupid, or you didn't like it, it was "gay." As a teen, I saw no harm in this. The thought never crossed my mind how that could hurt someone. Until someone in my family, whom happens to be homosexual, expressed hurt in how I threw that term around so willy nilly. I never used it again.

    I reach out, and divulge details of our journey because we want to help change the world. We want parents and other children to know that they aren't alone in their struggles. We also want to educate our youth that some words should NOT be used an adjective. It may not hurt you to hear it, but I promise you, it's hurting someone.

    This goes beyond just "crazy" and "gay." Words like "retarded" "short bus" "insane" "cray cray," these words hurt! I could go on and on. But then I would lose my train of thought. Basically, if you're a tall, skinny person, you wouldn't want someone referring to you as "that tall, skinny kid." You would want to be referred to by your name, or something positive about you. Same goes for someone with a mental illness. They don't want to be called crazy, or cray cray. Nor do they want to hear you calling others that.

"Sticks and stones will break my bones, but words will never hurt me." Bull! Words hurt, sometimes more than a punch to the gut!

    We are only as good as the examples we set for our children. So as a mother, I beg you to think about the words you are using as an adjective. You set the example for your children. If they hear you say them, chances are, they are repeating them.

 



 

Why Must Pain Be Necessary?

   Pita is giving Liam a shower, while I take a bath, and have some much needed "mental health time." I turned the on music on my phone, planning to drift into lyrics and forget how really sh!tty this day has been. It didn't help. Instead, I'm left ugly crying, and questioning my faith. Questioning life in general.

 I was raised with religion. My mother's family was Catholic. My father's Baptist. We were baptized, went to Sunday school and so on. Pita was raised Methodist. We have never attended church regularly, as service is too long for Liam.

    Each night before bed, from the time he could speak, Liam has said his prayers. When he was an infant, I said them for him. I too say prayers, and add special ones for those who need them. This isn't to say I don't sin. I cuss, sometimes like a sailor. But we are good people, and we are raising our son to be a good man. We believe....or so I thought.

    You see, when Liam cycles this far into his depressive mode, I question the existence of God. How could a man, so loving, so caring for those He created in His image, let one suffer so badly? Why are people murdered? Raped? Cancer? Mental Illness?

    I know, I know, we need the bad to appreciate the good. Seriously though. Today my son turned nine. There was no happiness. His father and I forced our smiles. Liam was blank and emotionless all day. We took him swimming and cray fishing, and his brain couldn't let him enjoy it. He didn't even eat his own cake because his stomach is so sick from this cycle. The sparkle that lights up his face is gone. Who could let someone suffer like that?

    But when I go to bed tonight, I will still pray. I will lay next to my son, listen to him say his prayers, and then I will silently beg God to help him through this cycle. To make it end sooner for him. I have to. If I don't have some sort of faith in something better, I won't have the strength to help my son through this.

    And before I close my eyes and attempt to get some sleep tonight, I will listen to this song. I won't let Bipolar Disorder ruin his life, or ours. I won't back down. Not ever.

IEP Meetings

    IEP meetings. Almost every, special needs parents' apple of discord. Why is it that so many families have to fight to get what their child needs AND deserves? I mean, these people go to school for a career, in which they are to help mold and teach children. Why is it that they seem so adamant to make us fight to have their needs met?

    Those of you who have followed our journey since the beginning, know what we went through with our local brick and mortar school. You also know why I pulled my son, and home/cyber school him. (here's the skinny: By day 4 of kindy, Liam quit speaking, eating and only cried and rocked. His shirts were ruined from chewing. Bus came on morning 5 and all hell broke loose. We pulled him. After a week of silence, he opened up and said the teacher had placed him in the hall for most of each day. The lunchroom smells made him sick and the noise in the gym made him cry. NO ONE told me! We started meetings. They argued that he wasn't autistic ("a clinical dx is NOT the same as an educational dx.") I ended up getting the State involved. They then decided they should give up the fight. I then told them to shove it, and home schooled.)

    Fast forward to 3rd grade. Two cyber schools later. My son gets speech therapy, occupational therapy, AND physical therapy. The three T's that the local school fought so hard to not give him. He also gets in home behavior therapy. (Which has decreased in the last year.)

    What makes me so angry is that, as his mother, I could see where he was lacking. Yet these "professionals" kept arguing with me. It took YEARS to get someone to listen to me, to get the right evaluations by QUALIFIED professionals. (I say qualified because I even had an OT outside of the school district, tell me that he didn't need OT or PT. Yet, here we are. With new therapists, that CARE to do their job correctly.)

    I guess my point of this post is this: As a parent, YOU know your child. You know what they need. You know them better than anyone else. Don't ever let the school, or "professionals" dismiss your concerns as trivial. You keep fighting. You go over their heads. If you still don't get anywhere, you go over that person's head. You are your child's advocate. You put on those proverbial boxing gloves, and enter the famed fight club, and you don't give in. You get what your child needs and deserves.

    Then you have a libation, and pat yourself on the back. You are a special needs parent, and when needed, you are a force to be reckoned with.

Because He Cries

Last night was a rough one here at the House of AuSome. Liam got upset with me because he wanted to watch a certain movie and I told him it was inappropriate for him. He got mad. So mad, that he shut himself up in his room to pout. For AN HOUR!

Liam is never too far from me. He won't stay anywhere. He follows me around the house. You get the idea. So I was shocked. I let him pout. He even wrote me a letter on strips of paper.

It came time for melatonin and he still wasn't speaking to me. I waited half an hour for his gummy to kick in, and I told him I was going to bed. He wrote me a note saying he wasn't talking to me, and he was going to sleep in the living room.

Again, I was flabbergasted because we share a room. He can't sleep by himself, and for any of us to get any sleep at all, this was our only course of action. I told him I understood. I bent and kissed his forehead, and told him I loved him. Tears were streaming down his cheeks.

I walked back to our room. As I was standing in the bathroom brushing my teeth, I heard the pitter patter of little feet. Then 2 little arms embraced me with such force, I staggered for a moment.

I looked down to see his face. All red, tears flowing down his cheeks. He started to heave with heavy sobs. I quickly rinsed my mouth and managed to walk him, still grasping me with all his might, over to my bed. We sat, and he immediately climbed into my lap. 

My heart sank. He hasn't cried this hard since his last severe depressive cycle. That was last year. It could come at any time, since the severe cycle always comes around the same time. We are on pins and needles, fearing it could come everyday.

I started softly asking him questions. "Are you okay? Are you still angry with me? Do you understand why I said no? Do you know how much I love you?" He wouldn't speak, only answering with nods.

You see, if he were having a meltdown, I wouldn't be barraging him with questions. I know that would only make it worse. With a dual diagnosis such as Autism, and Bipolar, it's usually one or the other, or one making the other worse. (Example, if he has a meltdown and screams nasty things at us, he sometimes then goes into a depressive cycle because he feels bad for his behavior. Or, if he's in a manic cycle, he is so high energy and stimming off the walls. If that makes sense)

He started pushing against my body to rock him. And so, we rocked like that for a good 40 minutes. The crying became softer, and then stopped all together. I took a moment and I silently thanked God. Seeing your child in a major depressive cycle literally sucks all the life force out of you. I pray everyday that it will skip this season, and we won't have to watch our son in mental agony.

He asked for the Kindle, and we sat and played a few games together. We laughed. We giggled. I kissed his gorgeous forehead. He told me he was sorry. He told me he was sad because he was afraid he hurt my feelings, and he doesn't like to do that. I smiled and assured him that I too, (believe it or not) was a kid once. And I too, had been in a similar place with my parents. 

He handed me the Kindle, snuggled into my arms, and fell asleep. I left him like that for a bit. Staring at his peaceful face. Silently wondering, how I got so lucky as to be his mom. With all the struggles, the good days and the awful ones, I wouldn't trade this child, or my life with him, for anything in this world!

When Liam is going through a depressive cycle, this song always comes to mind.

If He Doesn't Care, Then Why Do I?

  It's a gorgeous spring day here in Northeastern Pa. I stand in my kitchen, in front of the window, preparing
baked potatoes for dinner. I gaze out of the window in a bit of a daze. The time change is still wreaking havoc
on mine and Liam's sleep schedule.

  I see all the neighborhood kid outside playing. Smiling. Yelling. Laughing. Playing together and having a
blast. My heart sinks. My son isn't outside having fun. He hasn't been asked to take part in the games being
played. He sits in the other room, on his computer. Googling and reading about edible and non edible
plants.

  I feel my eyes begin to swell with tears, and I move my work further down the counter. This way, I can't stare
out  the window. In that moment, rational thought takes hold. Liam is happy. He is doing something he likes, and
he's having fun. He's also learning, and it's not forced learning. 

                                So why am I so sad?

  I enjoy time to myself. I would much rather be alone, with a good book or creating something, than to be outside
with a bunch of people, wondering when I should speak, or fearing I may cut someone off unintentionally. I think
that sometimes, as parents, we see what all the other kids are doing, and we long for our children to be taking
part in that too. That doesn't always make them happy.

  Yes, there are times when Liam longs to be included, and that is truly heart breaking. But in moments like these,
when he is perfectly happy being himself, and doing his own thing, why do I long for him to be included, where he
doesn't care to be?

  Sometimes I think that we need to step back. We need to assess the situation, and we need to think.
Is our child happy? Does he/she care that they are alone? Why do I care? If my child doesn't care, then neither
should I.

  So I asked him if he wanted to go outside and play. His answer? "No mama! I'm learning about plants here!"

  Matter of fact, just yesterday as we came into the neighborhood on our way home from town, there were kids playing outside. Liam commented nonchalantly, "Now that all these kids don't like me, or are mad at me, they don't ask me to play. But that's okay. I don't have to worry about anybody bein' mean to me."


  From the mouths of babes folks. Sometimes, the best advice comes from the mouths of babes.

Could Autism Parents Be Contributing To Narcissistic Adults?

     
 Cruising on Facebook this morning, and I saw the following headline trending:


  Children who are overvalued by their parents may develop narcissistic traits, according to a study


It made me think. As  special needs parents, everything my son does,we make a HUGE deal of it! You know what I'm talking about. He tried a new food, we do a victory dance. We reward with his favorite junk food. Writes his first sentence, reward and huge verbal display. Ties shoes for the first time, same thing. It goes on and on. Each milestone that some take for granted, we make a big spectacle of it for our son.


Could we be molding him into a Narcissist? You see, many of our children are left out by peers. They are socially awkward, and playing with NT children is hard because they play so differently. This bruises their egos. So it's our job to boost them up, right?


But what if we are wrong? Take a moment and consider this. Our autistic children are very blunt. They are direct and to the point. So, if we keep telling them how great they are, what hard workers they are, and so on, this could backfire on them in the future. It's not hard to fathom how that will play out when our children are around other children.


I have personally heard my son repeat some praises I gave him. When a particular neighbor bully called him the r-word, my son went on to tell him his IQ score and then ask him what his was. (He knew his IQ score from his latest school testing) The instant he was made to feel less because of his disorder, he pulled that sucker out like a
machete.


Also, when my son has been teased for being clumsy at sports, he'll spout off, "So I know more about computers and video games than my parents!" (Which by the way is true) This isn't how we want our son to be, and I'm assuming, you don't want your child to behave that way also.


Many of us advocates are reaching out to the world. We want them to know how special our children are. How special we are. But in that attempt, are we too sounding narcissistic?


So, while I think we do need to make the milestones our children reach a big deal, I think that maybe going about it differently, would be best. I'm still thinking of how to do that. All I know is, when my son starts to brag himself up around others, we stop him and tell him that no one likes a bragger.


We need to find the balance between ego stroking and narcissism....

Courtney and the Terrible, Horrible, No Good, Very Bad Day

Sounds familiar? Have you seen the movie? We have, it was great. It's so much easier to watch a family have a comically bad day than to have one yourself. Well, yesterday it was our turn, and trust me when I say, I'm not laughing.

Here's what went down. Get onto my laptop to check out the Legion and my email. Ya know, the one with the smashed screen that I can only use hooked into a monitor? Anyway, I get one to find an amazingly, exciting reply from an Autism magazine about the article they asked me to write. They loved it, and wanted it in a word document. Cool, right? Well here's where the day started to go down hill.

Windows 8 no longer offers Microsoft word for free. So, I went on to try and find a download. Viruses started to pour in. My antivirus was going off every ten seconds. So I closed it all out. Then chrome started repeatedly shutting down for no reason. Well shit! So I close everything out, and run the virus scan. All seems clear. So I then move onto doing a systemrestore and the entire computer just poof! Died!

The worst part? We bought Liam computer Minecraft for Christmas. He has been playing it every day! Now he can't. I was livid! I may or may not have throw the mouse
at the computer. Okay, let's be honest. I totally threw the mouse at it! I held back tears as my son came to comfort me. I put the laptop down, because I had to get away from it. Otherwise, it may have ended up going through a wall.

I composed myself, and Liam was more than eager to change the subject, so we decided to start his lessons for the day. I logged onto his school lap top. We started lessons, and he was doing great. My anger was gone. About 30 minutes in, the school web site crashed. I spent another 15 minutes trying to log back in. Restarting Liam's computer, and nothing. Seriously, I felt as though this day couldn't get any worse.

I was wrong, by the way!

We finished up what work sheets we could. I then had enough time to cram some food into my eating hole, wash up the dishes, and get ready for Liam's speech therapy, and child psychiatrist appointment. During this time, Liam was going to play some XBox. NOPE! NOT GONNA HAPPEN! His favorite XBox game is caput! It will no longer play. So now, Liam can't play Minecraft on my computer, OR his favorite game on his XBox. This was it for Liam. A meltdown ensued. He screamed for about 15-20 minutes, then calmed to crying for about 15 more. He was refusing to go to his appointments. I waited until he calmed some and explained that we all need to do things we don't want to do from

time to time, but we have to do them anyway.

With heavy hearts we all trudged out into the cold for Liam's appointments.We decided to reschedule his child psych appointment until next week. Liam was still feeling the
effects of our awful day and I didn't want to risk pushing him too much. After a 20 minute drive into
town, we pulled into the library, with just 5 minutes until his appointment. At a quarter after 4, Pita asks if today was speech day.

" I think I remember her saying she couldn't do Wednesday this week,
so we made it for Thursday," said Pita.

"SHIT! I think you're right." (of course that was my reply.)

So Liam checked the calendar on my phone. Thursday at 4.

Seriously????? Just one more thing to make this day crappier! To say
that neither of the men were pleased with my absent mindedness would be an understatement. Thankfully they both let it go quickly. We then managed to make it through it the grocery store, with no issues. All except, I of course, forgot the one damn thing I went in there for.

Murphy's Law and all that.

So as you can see, yesterday sucked. Majorly. Shitastically! We all know how our autistic loved ones are when it comes to their current perseverations. So when something happens that disrupts that, all hell breaks loose in our worlds. But here we are.

 Today is a new day, and so far, (knock on wood) it's going well. Which reminds me of my favorite part of the Alexander movie. A great reminder for all of us, when life knocks the wind from our sails........