Sunday, December 20, 2015

The Story of an Autistic Elf

    This is the story of our Autistic Elf. Of course, she's not Autistic but since she now belongs to an Autistic boy, her story and journey with our family, is much different than that of a "typical" elf. I'm sharing because yesterday on IG I was explaining the story of our Elf, on the EotS account. Many parents reached out to me to learn more, and then for some reason EotS deleted my comments. Since so many were interested in Tinsel's story, I thought this would be the perfect platform to share her journey with all of you.



     Hi! My name is Tinsel TrudyJohn! You can call me TTJ, but many of my elf friends just call me the Autistic Elf. I'm a scout elf, but I'm not your "typical" scout elf. I was adopted by the Legion family in 2013. Liam actually picked me out in the store because he wanted to choose his new friend. When he got me home and opened me up, he held me while Mommy read him my story. She went on to explain that once I had my magic, he could NEVER touch me. She also told him that after Christmas, I would fly back to the North Pole until the next holiday season.

    This made my boy super sad. He cried. A LOT! He wouldn't put me down for fear that when I got my magic, he could never play with me again. My boy has very bad anxiety and I was causing him more stress than joy. I felt awful!

     That night, once he was asleep, another scout elf came to bring me my magic. I immediately flew back to the North Pole. I insisted on seeing Santa Claus immediately, as my mission was of the utmost importance! He met me at once, and over hot cocoa and cookies, I explained my dilemma. Of course, Santa knew all about my special boy. He explained that such a special child, required a special elf. Santa told me that my boy chose me specifically, even if he didn't realize it. He said I would not be a typical elf, because I was now the elf of an Autistic child. The big guy knew just what to do! He said he would give me special magic so that my boy could hold me and play with me. He also said that I could stay with my new family, year round! On Christmas Eve, when he delivers Liam's gifts, he would take my magic back to the North Pole. Then, next year around Thanksgiving, he will send a Scout Elf back to me, with my magic, and I must fly straight to the North Pole so he can give me back my SPECIAL magic.

      This is how it works for me, and has since 2013. I know my journey is quite different than that of my other Scout Elf friends. I tell them all about my boy every chance I get, because I know how important my journey, and our story is. So you see, I'm not Autistic, but my boy is, and so I am the Autistic Elf, and that's what they call me at the North Pole. My new mother even made me a very special, Autism Awareness, so I can spread the word wherever I go! I love my boy and I wouldn't trade my job for anything in the world. Although, he needs to sleep more because some nights he doesn't leave me much time to fly back and report to the big man!

      Below are some pictures of my Elfcapades with my boy. Much like my boy, I'm very spunky, and I love to have fun!


Elves need Sensory Input too!

We like markers! And mustaches!
teehee!



Just hangin' around!


SNOWBALL fight!


I love to take sELFies!

Monday, November 30, 2015

Sensory Stocking Stuffers 2015

    I did this last year and a lot of you said you appreciated it, so here we are again this year.

    I do NOT get paid by Dollar Tree for these posts. I DON'T get free swag either. I do this because money is tight for so many, and even if it's not, a bargain is still a bargain. Also, a lot of autism therapy stores sell very similar toys, and jack the prices right up. That's not fair. Not when you can go to your local Dollar Tree and find the same things.

    So here it is, 2015's list of Sensory Stocking Stuffers. 




Two Tone Bouncing Putty I myself can NEVER put this stuff down!

Batter Operate Flashing Light Stick 


Battery Operated Flashing Batons  these are dual sensory! tactile and sight in one toy. Liam loves them!

Super Putty 


Stretchy Oblong Novelty Balls Liam and I both love these things! Sometimes they have ones that light up too. Even better!


LED Water Filled Rubber Bouncing Balls  I could stare at these things for hours! I love the smell of them too!

Light Up Yo Yo Balls  I remember the first year Santa brought one of these to Liam. I drove poor pita nuts with it. He finally, very calmly said, "Hon, please put that thing down!"

Licensed Character Bubbles  Bubbles are always a big hit!

Small 2 Piece Metal Puzzle  These are a great fidget toy.

To find a Dollar Tree near you, visit their website.

Wednesday, November 25, 2015

What I DON'T Have to do This Thanksgiving

     You know what I'm thankful for, especially this time of year? I'm thankful for an extended family that gets it. They really get it.

    Every Thanksgiving my one aunt on dad's side, hosts a ginormous dinner for all of the family. We each bring dishes to pass. We're so big that they have to fully extend their table, and even put a table in the living room for the rest of us. My cousin, her hubby, her three boys and my family share that table.

    I remember the first year we went with Beans. I was nervous how he'd do with so many people. He wasn't yet diagnosed, so I just thought he was anti social like myself. We took breaks and he ate nothing. Several family members asked if he was hungry, I just told them no. It was really no big deal. It was the same thing for the next four years.

    Then in 2010, he was diagnosed. Just a month before Thanksgiving. So that year my dad's family were the first of our extended family to learn that autism was coming to dinner! I'll never forget how receptive they all were. They all asked questions. They all listened intently. They never treated him any different from any of the other kids, but they also stopped asking if he was hungry.

    They all know he won't eat anything that's offered. We're lucky if he eats a bit of turkey. They don't make a fuss about it. They don't ask him where his food is. They don't bug him about not eating. If he leaves the room to get away from noise, they only ask if he's okay.

    I don't have to make excuses. I don't have to explain why he does the things he does. I don't have to quiet his stims, or explain his phrases (thanks to Miss Donna his SLP.) Lastly, I don't have to apologize if he's too rough, or too loud, or too rambunctious.

    They GET IT. They GET HIM! Matter of fact, my mom told me that some of my aunts have been "researching autism on the internet, so they can learn more."

     I'm pretty thankful for this family of mine. And I know that if Liam were able to better express his feelings, he'd second that notion. All he really says is, "Is it turkey day? Can I go see my cousins now?"





via GIPHY

Monday, November 23, 2015

To My Doctor Who Looked at Me Like a Leper

    Today I had an appointment with a new physician. I don't want to get into details, because believe it or not, I do like some privacy. Let's just say, ladies, DON'T put off your lady bits appointments! As much as they suck, getting them done on schedule can help and save you from more pain and problems in the future.

    I digress. So in speaking to the new physician I was trying to explain to him why I quit seeing his colleague, two years ago. He was trying to push me into a temporary and possibly harmful procedure, that I wasn't ready for. I wanted something of more permanence, and he wouldn't hear of it.

    The new doctor said, "But why? You're young and only have ONE child." Both true. "My son is autistic," I replied. "I'm done. We're done. I can't handle another child."

     He looked at me like I was a leper. Clearly, I wasn't conveying how I really feel. I was so nervous, and half naked. Clear thoughts were NOT forming. "I mean, it's not fair to him. I'm done. He needs me all to himself," I croaked. He looked away and asked me something else. I can't even tell you what it was. Or if I even answered him.

    I felt like a GINORMOUS a$$hole! I assure you I'm not. If you KNOW me, if you FOLLOW our journey, you know my son is my LIFE. My miracle. My heart. My soul. But this stranger doesn't know that. He probably thinks I'm a bitter mother, that doesn't accept my son for the truly unique individual he is.


via GIPHY

     If I could say anything to this man, I would say, "I came off as an a$$ today. I was scared, and nervous, and I'm socially awkward. My hubby and I have talked siblings for my son for years, but we both agreed that giving Liam our one on one attention was the best choice. For him. For us. Please don't judge me from our initial conversation. I promise, I'm not a douche bag! I'm a devoted mother and aggressive advocate for autistic rights. I just don't want any more children. It's not in our cards."

                                              Do you think he would believe me?

                               Gosh I feel like an idiot! This is why I don't adult so well!





Tuesday, November 10, 2015

Be Thankful 365 Days, NOT Just 30....

    If you told me twenty years ago, that this is where I'd be today, I'd have punched you in your eating hole, for daring to speak such nastiness. (I was a rough chick back then. I was kind, and I was fair, but I took sh!t from no one. I always had the under dog's back. I once bloodied a class mates face when he screamed and called me a whore in front of our entire class at lunch. All because I wouldn't let him cheat off my Literature exam. I once popped a boyfriend in the mouth in math class because he kept poking me in the ribs. I had asked him so many times to stop and he wouldn't listen. Finally I told him if he did it again, I would give him a fat lip. He did it again. Our substitute teacher told him, "She warned you. I think you had that coming. Now go to the nurse." )

    I digress. So ten years ago, had you told me this would be my life, I would have ignored you and probably not spoken to you again. I was blissfully unaware of the trials and tribulations that would become my life. I lived in my bubble of happiness and if you tried to burst it, I would do my best to distance myself from you.

               Now before you jump me for being a whiner, calm down and keep reading!

   ( I'm a very positive person. My glass is almost always half full (of coffee,) but I will NEVER sugar coat the life we have lived and continue to live. We all have struggles. I know this. I also know that even on our worst days, we're lucky. We still have MUCH to be thankful for. But that doesn't make those bad days hurt any less. Much like a paper cut, in the crease of your finger, those awful days will continue to burn and sting my heart, until I push them out of my mind.)

    I had my miracle child. The baby they told me I would probably never had. We had our first home. Hubby had a decent paying job. All was right with the world. Or so I thought. We had recently moved back home after hurricane Katrina devastated the south. We were thankful we had our lives and the few belongings we owned. To say we were annoyingly happy, is probably an understatement.

    Then, one thing after another started stealing the wind from our sails, and knocking us on our arses. It didn't matter how hard we clawed and grasped for that proverbial ladder, we just kept falling right back down it. We didn't give up. We fought harder. Hubby broke his back. He lost his job. We had to look to the state for help. Liam was a handful. Even at only 6 months, he gave me a run for my money. I didn't know any better, he was (and still is) my first baby. I was clueless. Without boring you with a TON of details that I don't feel like rehashing, the short and sweet version, is that life was going to hell in a hand basket.

    I remember in the thick of it, my mom mentioned she thought Liam had autism. I remember seething with rage. I was uneducated. I had only ever experienced children with severe autism. That wasn't my son. As a matter of fact, we didn't speak for a year. That's how angry I was. Liam was around 15-18 months at that time. He quit eating. He wouldn't let anyone touch him. He would line up his baby cars just so, and if you tried to touch them to play, he would freak out. I just thought it was a phase. It wasn't.

    Jump ahead to 2010. Liam was diagnosed with Autism. We were gobsmacked. I had to call my mother and tell her she was right. (The blasphemy!) The years to follow would become even more tumultuous. At that point though, we were at rock bottom.

    But then I educated myself. I read every book I could get my hands on about autism. (Thank you ABOARD's Autism Connection of Pa for your FREE library!) I got online and "met" other parents like myself. I fought endlessly for therapies, and school rights. I started to home school Liam. I started my Facebook page for support and to support others. Things were looking up.

    Then they went right back down. Those of you with a loved one on the spectrum know, there are great days, weeks, even months. Then things get worse. But for Liam, it wasn't "typical" autism rough patches. We had to seek more opinions. In 2014 he was diagnosed with Bipolar disorder. His actual diagnoses are now, Autism, ADHD, OCD, Anxiety, Bipolar Disorder, and SPD. How much can one little boy and his family take?

     The answer is a lot! Here I am, finally to the point of all my rambling on. There are days I don't understand how my boy can survive. How he can fight through those inner demons and smile another day. Some days I don't know if I am strong enough to help him conquer these demons. Some times I wonder how he'll ( or we'll ) make it through.

    But we always do. We may live in a small trailer. We may have no money. (Hubby is STILL fighting for his benefits.) My son, my husband and myself may have more diagnoses than an entire wing in a hospital, but we're alive. We have a roof over our heads. We have loving family. We have great friends (some of which live in here, the interwebs,) We have amazing senses of humor. Most importantly, we have each other.

    So as you scroll through your feed this November, and you see everyone doing their thankful 30, take a moment, and think of what you're thankful about. Then, continue to do this the other 335 days of the year. You can let yourself have a bad day or ten. You can be angry at the curve balls life throws at you sometimes, but bottom line, look to the things you DO have. If you spend more time dwelling on the good, the bad won't seem so bad after all.



Sunday, November 1, 2015

Sans Costume Doesn't Mean Sans Money

    Yes we're poor but that's not why he wasn't wearing a costume.

    When i was a kid i can remember the kids in school that barely had a costume on, or ones that came with nothing. We were never rich, but we never went without a Halloween costume. As a kid, I can remember being so angry at those parents. In my immature mind, they were slighting their children.

    Now I'm a parent, and this year my son was the one without a costume. Not because we couldn't afford one. Not because I couldn't make him one. But because he didn't want one.

    With a child on the spectrum and SPD to boot, I now understand that maybe those kids were sans costume for another reason. Maybe they couldn't wear one, or maybe they didn't want to.

    Liam was adamant for the past month that he didn't want to dress up. I was conflicted. Childhood goes by so fast, I hate to see him miss out. Yet I hate to force to take part in something that he doesn't have to take part in. He was sick all week so we didn't talk about it much. Thursday, Friday and even Saturday morning, I kept asking if he was sure. Trick or treat was today fro. 2-4. At 1230 he finally decided he needed a costume. He took the werewolf mask we made the other day (fine motor fun is HUGE in this house) and he tore up some old clothes. He was a "transformed werewolf."

Liam and his mask. This is the only picture he would sit for.


   I was worried people would think we were too poor to do better. I was afraid people would think we didn't care. Then I realized what I don't care about is what other people think. He was happy and who was i to ruin that for him. And so he went out and trick or treated in some torn up clothes, with a brown mask. He only went to a handful of houses and he was done. But he was happy, and that's all that mattered.

    My point is, if u see a kid in no costume, or a makeshift costume, don't judge. You don't know that child's story. You don't know their parents. If they're happy, that's all that matters.

Hope you all had a Happy Halloween.

Thursday, October 22, 2015

An Open Letter to Frontier Communications

Dear Sir or Madam,

    You don't know me. You may not care to know me, and that's fine. But I want you to understand something. From a point of view other than your own.

    This world relies on the internet. Sad, but true. It's one of the things that makes our world go round. Some people rely on this more than others. That would be people like myself.

    You see, people like me cyber school a special needs child. We NEED our internet to be working at peak performance, ALL THE TIME. When we are dropped continuously, or it lags so badly that it stops streaming, it sets my child off. 

    You may be thinking, "Well, he'll have to get over it, that's life," and while I see your point, I want you to see mine. He isn't mad because his internet isn't working. He gets angry because he can't finish his school lessons. He gets angry when he has to repeat the same video various times because it skipped through most of it. When a video that should take 5 minutes to watch takes 20 because of the lag, there's something wrong.

    When he does get his school work done, watching Youtube videos is his reward. It's one of the things he loves to do most. When your internet isn't working the way it's supposed to, he can't do this. He again gets very upset. He feels like YOU are taking away his reward.

    Another reason parents like myself depend on YOU to give us the internet capabilities we pay for, is we need it to keep an eye on our children at all times. Yes, you read that right. Ever hear of video monitoring system, aka, a nanny cam? I'm sure you have. By now, most new parents have them. Well, parents like myself have them too. We need these because we need eyes on our children everywhere, all the time. When our internet isn't working, these cams and monitors don't work. They NEED the wifi to communicate with one another. It's very sad when the wifi signal gets dropped ONE room away the router.

    So why am I complaining? I'm complaining because in our area, Frontier is the ONLY choice for most of us, for our internet. I'm complaining because you tell us that we have "Broadband Ultra," and it's supposed to be the fastest internet we can get it. Not only is it NOT fast, we are continuously dropped, it lags terribly, and we can't have more than 2 devices connected at a time without causing issues with our connection.

    As you can see from above, we DEPEND on the services we pay for. We aren't getting these services. We have had techs in and out of here and they can't understand all the issues we're having. It's not an issue with the router, or our lines, or any other thing within OUR control. The issue is with Frontier Internet. 

    I know I'm not the only parent that is complaining about your services for the same reason. It's time that you, as a company, step up and figure out why so many in our area are having the exact same problems. Why are we all paying for something that we aren't getting?


Sincerely,

A very fed up, special needs parent that wants something done about this, and the rest of Bradford County Pa.



    

    

Monday, September 28, 2015

Do You Wish You Never Had Him?



     I was recently asked by someone, "Don't you sometimes wish you NEVER had him?" 

    The question wasn't meant offensively, and I paused a moment, letting those words sink in. I didn't pause because I had to ponder my answer. I paused because I think I was just shocked at the question. I am not judging the person that posed the question. Yes, it is a very harsh question. But it was an honest question, and I have no issues with speaking honestly, and candidly about our journey.

  "No," I replied. "Be honest," she said. "Honestly, no I don't. I hate Bipolar disorder. I hate when it makes him depressive. That, I wish we didn't have to deal with," I replied. 

    That is the God's honest truth. Even if someone waged this question at me on an awful day, that would STILL be my answer.

    Here's OUR truth. He has BAD days. Days where I think to myself, "I don't know if I can do this. I don't know if HE can do this."  Days, weeks, where we can't leave the house, because he is in such a deep depressive cycle, he can't stop crying, screaming, or stimming. Days where he begs me to make it stop. Days where he begs his brain "to leave him alone." Days where I won't contact my family, or react with followers on my page, because I can't leave him alone, and because I can't stand the thought of talking with people and trying to "act" like everything is okay. But you know what? HE perseveres. HE gives US the strength to continue. HE is the reason we are strong. HE is the reason we keep on keeping on.

     Through all of this, never ONCE, not even for a split second, have I ever wished Liam wasn't my son. I suffered SEVEN miscarriages before God gave him to me, and I thank him EVERY night for my son. I honestly do. I have never even wished Liam wasn't autistic. I have however, wished there was a cure for Bipolar Disorder. BP makes his life hard. I sometimes wonder how he bears it. He's definitely a stronger person than I am!

    Throughout my journey I have met parents that want a cure for autism. That used to to make me angry. But I don't walk in their shoes. My son has ups and downs, but they aren't as severe as other kids. So I have no place to judge these parents. It's their life. It's their choice, or their child's choice and it isn't for me to decide. For us, autism isn't the hardest part of our lives. For us, it's the mental illness. That is what we have a problem with.

    When asked, Liam will tell you he wouldn't cure his autism. He will tell you he "likes how he thinks." But ask him if he'd cure his mental illness, and he won't hesitate to say YES!



 




Saturday, August 29, 2015

Eminem Helped my Speech Delayed Son

    Yes, you read that right. Eminem.

Before I go any further: **DISCLAIMER** This post is in no way endorsing that Eminem will help your child speak better. I am merely relating OUR experience.

    I digress. So, my son is on the Autism spectrum. He actually spoke early, but was super hard to understand. We were translators for years, and sometimes still are. I was told when he was 5 that even though he spoke, it was still considered a speech delay.

    Let me take a minute and say THANK YOU to the two women who have been my son's SLP's. He's been in speech therapy since he was 5. People can finally understand what he's trying to say, and he's doing much better with context. However, he sometimes stutters, and still has issues with some words. This is where we feel Eminem has helped.

    I love music. We have always exposed him to all forms. (Hearing your 2 year old sing Jailhouse Rock, is adorable. Even if it was hard to understand what he said.) When he turned 7 he decided that his favorite was Eminem. He LOVED to listen to him rap. I downloaded all the CLEAN versions I could find and filled his tablet.

    Liam would listen to the same song, repeatedly, all day. If it came on in the car he would screech until everyone was quiet so he "could rap." Little by little, he was getting it. If you're a fan of Eminem, you know how fast that man can speak. He also speaks very clearly so you can tell what he's actually saying. This was great for my son.

    While Liam can't keep up with all his songs, there have been a select few he has nailed. Of course, they are his faves, and I really couldn't count how many times he has listened to them. Practiced them, rehearsed them.

    We were headed to Vestal today and he asked for "his" Eminem. I obliged. It wasn't long before Pita and I were tuning out Eminem, so we could hear our son singing. He nailed it. EVERY word. (Except for the curse words since they're spun out. ;) )

    To hear a boy who was once so hard to understand, speak so clearly, so fluently, and with such confidence, well, it warmed my heart. Warmed Pita's too. I commented quietly on how much Eminem's music has helped him, and he agreed.

    15 years ago, while listening to "Slim Shady," I never thought that my future son would be such a huge fan. I also never thought that Eminem would be helping my son to speak better. Funny how life works.

    Therapies come in all forms. In so many ways. Something that may seem like a kid, just listening to music, could be a child learning to speak better.

    I give you, Liam.... (recorded and uploaded with his permission)

video

Sunday, August 9, 2015

Back to School, Special Needs Style

    Back to school means many different things for many different families. The lists, the shopping, and so on. Many moms are excited to have a break. Many will miss their kids. Many are worried.

    Special Needs parents are no better than NT ones. Our lives are just different. Back to school for us, means more worries. How will our child handle the change? How will they do in school? How will they handle the bus ride? Will they ride a bus with NT kids? If so, how will they handle that? Will their IEP be followed? How often will we get a call from said school?

    I'm lucky in this department. Our decision to home school was one of the best I ever made. (It was a no brainer after our local school violated our son's civil rights) This isn't to say I don't have worries.

    We still need to get a routine down. This sometimes takes a couple weeks. Liam, like many autistics, loves routines, but only if they are HIS routines. For me, "mommy mode" needs to be turned off and "teacher mode" needs turned on, at least for part of our day. So it takes us a bit to get into our groove!


    Then his therapies start back in for the year. Since he has in home OT and PT, we just work around those times. Speech is at our local library, so that's the one we schedule for "after school." Oh, and then he has a mobile therapist, so we must work around that too.

    He also has an IEP. Yes, he is "home schooled" with a PA cyber school, so he does get an IEP. They also provide all the above therapies except the MT. (His insurance provides that.) I have IEP meetings just like you do. Except I don't need to get dressed and leave my house! (home school perk number one!)

     School shopping? Pffftttt! I don't have to do that either. Liam, like many autistics doesn't care for clothes, so he does his lessons in his underpants. No need for a whole new wardrobe! School supplies? The cyber school mails them to us! Everything he and I both need for a successful year. (home school perk number two!)

    Bed time? No need to prep for that! We have Liam on an "asynchronous" course. That means we do his lessons, on his time. Sleep is for the weak in this home, and Liam is RARELY in bed before midnight. So if he sleeps in, cool! We start classes around 11 or noon the next day. This gives him time to do something he wants, and then we do lessons, and then he can play outside. (home school perk number three)

    This also means if he's having a rough day, we can skip lessons. So no calls from school about rough days! We can also double up on lessons on good days! Last year, Beans was done with school in APRIL! Yes! We have been on summer break since spring! (getting into our groove may take a bit this year!)

    School bus isn't a worry! (Thank God, because the 4 days he rode it in kindy he was bullied for his lunch snacks)  (home school perk number four!)

    Doing school from our living room is a blessing and a luxury! As you can see, personally, we have many perks, but I still have worries. Thankfully, they aren't as severe as the special needs parents that don't have the option to home school. I've had those worries before and it wasn't fun. So I feel for all of you. Keep that in mind as you are sending your NT kids back to school.

Wednesday, July 8, 2015

Why I Came Out of "Retirement"

    This has been a rough spring and summer here at the House of AuSome. Liam hasn't been able to shake his last depressive cycle for months. It's been one hell of a roller coaster ride, for him, and for us, his family. He's finally starting to cycle to manic. (Of course he is. I ran out of melatonin and am broke until Monday! Special Needs Mom humor there :) )

    Anyway, a few months ago I learned about the Semicolon Project. (Click the name for more info if you haven't heard of it yet.) I LOVED it! The meaning really struck my heart strings. I immediately drew a semicolon on my wrist and shared the photo. It was then that I knew that I needed this permanently.

    (For those that haven't followed us from the beginning, or those with a shoddy memory like me, I used to be a tattoo artist. I gave it up to be a mommy. A mommy to a very special boy, who is my greatest creation ever! So in essence, I'm "retired.")

    Not only is Liam affected by Bipolar Disorder, but so is my Aunt, and my Grammy. So for me, this tattoo was a must have. I asked Pita what he thought. He knows that once my mind is set, it doesn't really matter what he says, but he goes with it. ;) I wanted him to join me though. I thought that we could both get one, in support of our boy. He of course agreed.

    And then I had second thoughts..... You see, I also suffer from Fibromyalgia, so I was worried about being able to tattoo again. I decided that the semicolon was small enough, that I could handle it. If my son can handle all that he does, then I could suck this up!

    So once we had a bit of "extra" money, I ordered some ink and tubes. Thankfully I still had sealed needles. I couldn't wait for the supplies to arrive.  They came in on Monday. As soon as they did, Liam and I got out my tattoo equipment and got started!

    Liam sat and helped me get all set up. He actively engaged in what I was saying, and asked questions along the way. He shook the ink for me. (I think he really just enjoyed the sound of the ball bearing that rattled inside.)

    He asked if it hurt. He asked to see the needles. He then informed me, "Put those away or I may pass out mama!" Then he heard the buzz of the machine and he was enthralled. He held my spray bottle of green soap and sprayed for me, each time I paused the machine.

    In 10 minutes, my semicolon was done. I reminded Liam again what it meant and he beamed. Pita came out for his, and then Liam lost interest. (Hey, I got a good 15 minutes out of him, so I was impressed!)
My semicolon! I love it! Pita's is in the same place, but opposite hand.

    We shared our pics to facebook and by that evening, 2 more people in our extended family reached out to join in. They wanted something a little different though. I got to work drawing it up, and they were in love.

    The next day we went over so I could do their tattoos. We explained to Liam that they too wanted to support him. He just smiled. While I tattooed them, he swam and played under Daddy's watchful eye. I sat, silently wondering, how much of what we told him about the tattoos did he understand?

Liam's Aunts tattoos


    On the way home we had to stop at a store for milk. When Pita came out, he was grinning. "Hey hon! That girl at the register saw my tattoo. She has one too!" Liam piped up, "ANOTHER SUPPORTER FOR ME! YAY MAMA! NOW I NEED ONE!"

    He gets it! He understands. When we got home, he brought me a marker. "Mama, I'm ready for my semicolon, because I want to pause and think,  my life is important!"

    And there you have it folks. From the mouths of babes. <3

Liam's "tattoo" it's faded because he's sweaty!

Sunday, June 28, 2015

Autism Parents Do NOT Hate You

Dear "NT" (neurotypical) Parents,

We don't hate you. We don't dislike you. We aren't jealous of you. I think some of us are envious, but never jealous.

Many times you seem to misinterpret our intent. When we say, "you're lucky to  worry about sports, or girl scouts, or sleep overs, college," and so on, we mean it. We know these are big worries.

 When we say we would love to worry about those things, often times, you get bent out of shape. Don't. We don't belittle your worries at all. What we mean is, we would rather those worries, then the sad ones we are faced with.

For a moment, put on some special needs parents glasses. See through our eyes.

We worry because our children often stand out and are bullied. (Not to say that yours aren't, but often times, it's special needs kids whom are targets.) We worry about our children being successful in a mainstream classroom. Getting invited to other children's parties. Being asked to play a school yard game.

We worry about IEP meetings. Therapies. Specialist appointments. College isn't even in some of our children's realm of possibilities.

We worry about what will happen when our children age out of the system. For many of us, we worry about who will care for our children (even as adults) when we pass away.

Some of our children have comorbid diagnoses. (Which means they don't just have Autism.) Many of them also struggle with mental disorders. So now we worry about hospitalizations. Maybe even institutions.

So you see, when we say "we wish we could worry about tee ball," we aren't demeaning your worries. We are saying we wish our worries were the same as yours. "Happy" worries as I refer to them.

Please, when you read our memes or our posts about these issues, try not getting so upset. Try putting on those special needs glasses I talked about.

Parenting is a rough gig. Whether your child is NT or not. We know that. 

Try understanding our worries for a moment.

Sincerely,

an Autism Mom <3

Sunday, June 14, 2015

We've Been to Hell and Back, So Don't Say I Never Took You Anywhere

    Ten years ago today Pita and I said I do. It was a million degrees that day in Mobile Alabama, and I literally felt as though I was melting. We had no clue how turbulent our journey together would be. That day we never even considered it. We were happy and that was all that mattered.







    Long story short, I conceived during Hurricane Katrina. I was high risk and had to quit my job as a tattoo artist. Pita took a job in construction because there was so much damage from Katrina. Sadly though, people needed their homes fixed to live in, but were still waiting on their FEMA checks, so hubby rarely got paid. We were barely making it. By December we moved back to Pa.

   That was just the beginning. From then on, every time things seemed to look up, something else brought us down. So is the way of the world I guess. Our marriage has been tumultuous, to say the least. We have wanted to give up a few times. We didn't. We stuck it out, and here we are.

   Marriage is work. It's never sunshine and lollipops. Life has a way of slapping us when we're down. We're pretty used to that. Through major surgeries, chronic medical conditions, autism, bipolar disorder, and living on squat, we persevere. We choose to fight, so here we are.

    Today we're having a small "reception" complete with a wedding cake because we didn't have that when we got married. Pita came home from picking up the last minute items that I needed, and said, "Dammit! I forgot to get you a card! I even had something so nice to say. Well, I'll just tell ya!"

     "I was going to write: We've been to Hell and back so many times. I don't have a lot of money, but together we have a lot. And since we've been to Hell and back so many times, you can't say I never took you anywhere."

    That pretty much sums up our marriage. Without humor and added sarcasm, I think we'd never survive. When life kicks us, we laugh (well after a day or so of sulking.) If someone were to ask us what the key to our marriage has been, I would have to say, humor, laughter, resilience, forgiveness, and of course love.

    "We don't have a lot, but together we have it all."

Wednesday, June 3, 2015

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.





 



 

Monday, May 11, 2015

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.


Monday, April 20, 2015

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.

Thursday, March 26, 2015

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.

Tuesday, March 17, 2015

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.




Tuesday, March 10, 2015

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....

Thursday, February 26, 2015

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........

Tuesday, January 20, 2015

STOP Using Ableist Language!

    Skimming through my news feed on Liam's page, and this gem jumps out at me.

(No, I didn't credit this picture, because I chose not to shed light on people who use images like this for likes)

8 years ago, I may not have batted an eye at it. Today, well, today it pissed me off. When you have a son who suffers with a mental illness, this kind of meme isn't funny. It's debilitating. It further stereotypes mental disorders, those suffering from them, and the hard work parents and providers are doing to stop these stereotypes.

Did you know this is also known as ABLEISM. What is it you ask? Let me tell you.


Let me give you some examples:

Retarded
Mental
Insane
Crazy
Wacko
Short Bus
Psycho
Moron
Maniac
Loony
Dumb 
Derp

Need I go on? If you want a more comprehensive list, Autistic Hoya has an amazing break down of all ableist language.


Bottom line, whether you're the parent, relative or someone with a mental disorder, using this type of language hurts people. Same as calling someone fat, or ugly, or whatever term you use to berate someone.

There are people and children in this world struggling with mental disorders. They are people, with feelings, and thoughts of their own. STOP making fun of them with this type of language. STOP using it to get "likes" on your page. STOP hurting other people.

Our world is what we make of it. Let's make it a better place for EVERYONE <3

Rant over!