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."

Don't Use "Crazy" as an Adjective

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

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

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

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

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

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

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

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

 



 

Why Must Pain Be Necessary?

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

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

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

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

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

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

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

IEP Meetings

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

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

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

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

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

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