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!

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.

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

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!

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.

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.

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.