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.

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.

Individualized Educational Plan Laughs and Tears

AKA, IEP laughs and tears....

Anyone here ever look at IEP drafts and laugh at the goals?

No? Just me????

Now before you rip my head off, keep reading.....

I don't laugh because I think my son can't pull this off. I laugh because half of these goals are on MY shoulders, and I think HOW THE HELL AM I GOING TO PULL THIS OFF?







I HAVE to get my son to do these things. I home/cyber school. So half the goals are geared towards his therapists. The other half are geared towards what I have to work on with him.

No more than TWO verbal prompts? Do they KNOW my child?

On task behavior for 30 minutes at a time???? 80% of the time???? With ADHD????

Also, I laugh over the ones about licking food, or even eating it. I laugh because I have been trying that for years. I have been puked on. I have had my dinner puked on. All over trying to get him to eat something new.

Food aversions aren't this easily over come! I pray the new OT has a tarp or a parka to keep the puke off her nice work clothes!

Next up we have the self care goals. These don't make me laugh. They kind of make me sad. Liam will be 9 in May. He has tied his shoes ONCE. It took a lot of tears to get there. Now he refuses because "it's too hard, and I just can't do it mama!" He can't button. Snapping is a struggle. Zippers? He can't zip his coat either. If you start it, he can. But he can't put his coat on and zip and snap it. These goals I PRAY the OT can pull off. I PRAY he will do his best for her and learn these tasks. I know it will make him feel so much better about himself!

You can do it baby! Mama knows you can! <3

You know what Liam hates MORE than tying or zipping? WRITING! His cyber school sent me the "Hand Writing Without Tears" curriculum in kindy. That name is SUPER deceiving. He had tears. I had tears. I think the dog lying next to his desk even had tears, hearing her boy so distraught.

They have instituted  Scribe for him. (we are still waiting on the program) But in the mean time, my baby needs to learn to write more legibly. The reversals and the mix of capitol and lowercase is quite bad. Thankfully the OT will be working with him on this. I don't know how much more my heart can take. Watching your baby struggle day in and day out is hard. Home schooling is DEFINITELY NOT for the faint of heart.

There were a lot of other things in his IEP that broke my heart. For his privacy, I am keeping that to ourselves. It's hard to see where your child falls short in writing. It's hard to swallow.

So I guess, part of the reason I choose to laugh at some of these goals, is because other things in the IEP are hard for me to handle.

Then I step back. I look up from my writing, and I see a happy, handsome, and fairly healthy little boy. Busy lining up his comic books and humming to himself. In that moment, I know that no matter where he falls short, no matter where he lacks, he is happy, and he is mine, and I love him more than life itself!

First Day Jitters....

  As I see pics of friends' kiddos heading back to school, and I hear about little ones starting kindergarten, I am so happy for them. Yet, for me, it makes me queasy.

You can't tell, but I was scared to death to let him go. (2010)

I remember the tears and the fear in Liam and myself that first day. It was rainy and dreary. My friend brought her kiddos over to wait with Liam for the bus. He was so excited. He danced all over the deck. When he got on the bus, I saw him put his brave face on. I watched as he choked back tears. I too did the same, because I didn't want my baby to see my fear.

Look how happy he was!!! (2010)

He rushed to get on the bus as he fought back his tears (2010)

   I remember waiting impatiently for him to get off the bus. I remember the look in his eyes when he did. I remember how he didn't speak, refused to eat, stared blankly around the room. My heart sinks, I want to vomit.

  He endured school for 4 days. He was placed in the hallway when he couldn't handle the class, the noises, the smells, and so on. At no time was I told. I emailed his teacher on day two. Asked her how it went. Asked her why his shirt was all stretched out around the neck. Why it was soaked. She told me,  "he misses you, that is all." At no time did she tell me he was spending his days in the hall. At no time did she tell me he vomited in the cafeteria and was sent to the nurse. He was sent out of gym, music and art, and only was able to tolerate the library.

  I am sickened. My child was treated like an unwanted animal, and I was none the wiser. I cry, a lot. When I see that teacher in public it is all I can do to refrain from mauling her. My son is terrified of her. He refuses to step foot in schools. He has a hard time coloring because he always remembers how she yelled at him and mocked him in front of a class full of strange kids. Just because he couldn't color in the lines.

   I know I made the right decision to pull him from that hellacious school. It was an easy choice to pull him, but a huge decision to take over his education myself. It has been hard being his teacher and there are days I get so upset, I do raise my voice. I am not perfect, and I will never claim to be. I have learned to walk away, and take a few breaths, and he is learning to do the same. We are learning together.

  I am watching my son flourish. When he aces math with no issues, he beams with pride. When he reads to me (a story of his choosing) he is all smiles. Inside, I am exploding with pride because I taught him that.

   I jest about the choice to home school, because it isn't easy. It's not for the faint of heart. It's not for everyone. For us, it was the only choice, the only way. When people ask me if Liam will ever return to brick and mortar school, I say I hope so. But do I???? Not really. It makes me sick to think about it. It makes him freak out to talk about it. Sure I would love a few hours of peace. But not at the price of my son. He didn't deserve the way he was treated at Northeast Bradford, and I can't and won't make him go through that again. When and if HE decides he wants to try, I will do my best to pave the way for him. Until then, we home school!

Look how happy he is in his personal class room! (this was his first day of school last year) he was counting ALOUD (which means yelling, bc he is so very literal. ( Blurred bc he does school in his underpants!)

♥♥♥♥