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.



    

    

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!



 

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)

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.

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!

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

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."