Some days are hard, others just suck

    I try, so very hard, not to let life get me down. We have been dealt a hard hand, but we persevere. It's life, and that's what you do. But I would be lying if I didn't admit there are days that kick me in the gut. Steal my breath, and stop my heart.

    I give you the good, the bad and the ugly. I don't sugar coat. I won't. I will respect my son, and his privacy as much as I can, while still trying to share our struggle, his struggle, so that others know they aren't alone. And so I don't lose my mind by bottling it up inside.

    Not long ago I spoke of his psychiatrist upping his medications (about 2 months ago) and how that wasn't kosher. It had adverse effects and he needed to be dropped back down to the lower dose. The wait list was hell, and until that time I took him off. I had too. It was either have a hyper, loud, stimmy child, or a child that was either crying or aggressive. I chose "normal" Liam.

    After 2 weeks, we saw the psych and he dropped it back down to the first dose. He asked me if I wanted to take him off completely. I thought that seemed odd, since Liam did so well on the low dose. So I told him no, just the lower one.

   That was over a week ago. The low dose is now affecting him like the higher dose was. Dr. S said this could happen with a dual diagnosis of autism and bipolar (and ADHD, and then some.) He said that sometimes treating one will make the other worse.

    He was right. So I took him off. I won't let him live that way. When your 8 year old BEGS you NOT to take his meds because, "They make me feel bad momma," you stop, and you listen.

    As I sit here tonight, and I see him sitting on the couch, I am broken hearted. He's not playing. He's not talking. He doesn't want anyone to bother him. He is refusing to play with his older brother. (who isn't here often, (he's 18 and how dare he have a life ;) )) and when he is here, Liam NEVER leaves him alone.) He is merely a shell of the boy that I once knew.

    It's not fair. It's not right. He is EIGHT years old. Why in the world does he have to deal with this? Why does his life have to be so hard? I always try to see the positive in life, but today I see none of that. Today I see a little boy who has more on his plate than those three times his age.

    Yes, I'm thankful for my son. For our lives, and for waking up to his beautiful face every morning. But I am pissed that this life has to be so hard for him. For me. For his father. Being a parent is tough. Being a parent that has no control over your child's life is even tougher. I can't make the Bipolar go away. I can't take away the pain. I can't make the cycles stop. Autism has nothing on Bipolar. Bipolar is evil and it robs my son of the happy life he deserves.

   Today I'm wallowing. Tomorrow I will get up and I will kick Bipolar's arse. For my son. Because nothing else matters, and he deserves to be happy.
 

You're raising a bully.....

    If you follow our page or my blog, you know that where we live sucks. No bones about it. We are surrounded by children who bully our child, and parents who could care less.

    Matter of fact, here's a great example. Last fall Liam was outside playing with his old bike. It's beat up, it's too small for him, and it needs to be junked. You know as well as I do, that our kiddos don't part easily with certain things.  Anyway, he was playing with his bike, his father was in the yard preparing it for winter.

    Out of nowhere Pita heard, "Hey Liam! The baby called, he wants his bike back!" You see, two neighbor kids were outside, but they didn't know Liam's dad was too. So there they were in the road, behind our car, taunting my son.

    Pita came out from around the car. The kid who said that almost peed his pants. Hubby yelled, "I'm sick of you bullying my kid! Who do you think you are?" The other kid that was there (who has bullied Liam several times himself) quickly spoke up. "I didn't say nothing Pat! He told me to get Liam's attention. But I didn't say nothing, I swear!"

    The kid who did, hung his head. He knew he had been caught. He also knew that he blew it. He used to play here a lot with Liam. As time went on, he would beat on him, or pick on him when other kids were around. He would knock on our house and run away, and Liam would sit inside crying because all he wanted was a friend to play with.

    Now before you say anything, we did go to the parents. MANY times. We all know that kids are often a product of their parents, and this time was no different. The father will just scream and cuss and the mother will swear her child does no wrong.

    So, long story short, Pat told this kid he was never welcome here again. He told him Liam needed REAL friends, not bullies. Kid never came back around.  Until yesterday. My friend's son whom lives out of town with his dad, came to spend the night with Liam. Bully kid saw him here. He stayed on the outskirts of our yard and told N, "I can't come there, because Liam and I had a fight."

    N told me, and I quickly corrected his info and told him what really happened. He just shook his head. Not long after that, bully kid's mom messages Pita. "***** wants to come apologize to Liam, but he's afraid to come over to your house." (name omitted for privacy)

    Pita was pissed. He quickly informed the mother of why he had words with her son. He told her he doesn't need to be afraid to come over here. That he is only saying that because he was caught being a bully and was called out on it. Pita informed her of all the other times he bullied Liam and told her that we are done. We don't want Liam to be around kids like that.  Her reply.....

                                    "Kids will be kids!"

Really? So because he's a "kid" it's okay for him to verbally harass my child? When he is playing in my yard, minding his own business, it's okay for your child to tease him? It was okay when your son called me a "fat b word," when I reprimanded him for punching Liam in the stomach. It was okay for your son to steal from mine, and blame it on someone else. When you were given proof, you denied it and said, "my son would never steal."

   Do you realize you're raising a bully? Let me define that for you, because I have heard you say, "my kid isn't a bully!"

bully

 noun

1

a person who teases, threatens, or hurts smaller or weaker persons <officials were warned that if they wished to avoid a school shooting, they had to deal with the local bullies>

Synonyms bullyboy, hector, intimidator

Related Words antagonist, enemy; abuser, baiter, giber (orjiber), harasser, harrier, heckler, mocker, needler,oppressor, persecutor, ridiculer, taunter, tease, teaser,torturer; goon, hood, hoodlum, hooligan, mug, punk, rough,roughneck, rowdy, ruffian, thug, tough, toughie 

(definition from Merriam Webster)

   So, by saying, "kids will be kids," you're making an excuse for your child's behavior. You're making it OKAY in his eyes, because it's okay in your eyes. Your husband was quoted as calling my son an "autistic retard," and in turn, your son has called him that many times. You see nothing wrong with that. You make me sad.

   I feel terribly that I have to keep children away from my child. After all, in one sense, you're right. They are just kids. BUT, as a parent it's YOUR job to tell you child when they have done wrong. It's YOUR job to raise them to respect adults. To treat others how they want to be treated. To be kind to those who are different.

    Please, for the rest of us, don't raise a bully. Raise a kind, caring, loving child. Leave the world with a good person, not someone who will bring others down.

Things Not All Parents Need to do....

Parenting is a hard gig — special needs or otherwise.

I went into this gig with outlandish expectations. If you follow any social media platform, you probably see many articles on child rearing or pictures of how things “should be done.”

I’ve learned that a lot of that stuff is a bust. Here’s a list of parenting “essentials” that I believe you shouldn’t feel guilty about skipping as a parent.

1. Expensive monthly, then yearly, professional pics of your kiddo.

We’ve all seen them. Although gorgeous and so memorable, can you imagine the cabbage that costs? I learned I could drape a nice blanket over my couch and get amazing baby shots of my son. I learned how to use the timer on my camera to get some pretty good family pics too. I learned that as he got older, getting him to sit and pose would prove to be a nightmare similar to entering a battle. I learned I can take some pretty good pics of him and get them printed for a quarter the cost and without much of a fight.

2. The fancy holiday outfit.

Each year my Facebook news feed is filled with people’s kidlets in their fancy holiday attire. If money is tight, why would I want to spend 30 bucks on an outfit my kid only wears once? Add in autism and good luck finding fancy schmancy clothes your kid can tolerate. I’m lucky to keep him in more than underpants when we’re at home. Getting him into dress clothes, has happened one time in his life. They were hand-me-downs, and it was a tee with a sweater vest. It stayed on him no more than 20 minutes.

3. A nightly three-course meal

Can you hear me laughing to myself over the mere thought of this one? I was raised with one meal with three or more food groups, and you ate it or you went hungry. Then came my son, Liam. Even my parents will admit this is a joke in my house. I often make two or three meals, never with more than two food groups. If I get Liam to eat two food groups in one sitting, I feel like I won the lottery.

 4. A sit down family meal at the dinner table

When you have a child who can’t tolerate various food smells, you quickly learn this is an unreal expectation. The alternative is vomit on your plate. Trust me, let them eat in a different room if that’s what they need to do. If we do sit down to eat together, it’s in the living room, at separate ends. But hey, we’re together. He’s happy, he’s eating, so it’s a win-win for me.

5. Eight to ten hours of sleep a night

OK, I may have peed a little laughing over this one. As a special needs mom, I learned I can function on little to no sleep. Thank God for coffee. My kid requires barely any sleep; therefore, I don’t get much either.

6. A “no co-sleeping” rule

Many people have varying opinions on this subject. Don’t listen to them. I was totally opposed to it from the beginning. And then I had a baby. A baby that was upevery hour, on the hour. Feed, change, repeat. I don’t think I slept more than 20 minutes at a time for the first year of his life. No joke. He didn’t sleep through the night until he was a year old, and even then it was spotty. Add in night terrors. Add in a child with separation anxiety. We started co-sleeping so we could get some sleep. My son’s now 8. He sleeps in his own bed, next to my bed. Yes, you read that right. We share a room. It works for us. Special needs parenting is hardcore.

I could probably think of a ton more, but my child is demanding my attention. I know… how dare he? Bottom line — never feel like you have to do certain things as a parent. Do what you feel is right for you and your child.

Besides, half of us are winging it anyway.

Multiple Miscarriages and a Miracle Baby

    So the Mighty has asked their readers what their greatest gift has been. I could say the laptop from my parents that I am typing this on. I could say my awesome phone generously provided by my inlaws. I could say a roof over my head and my family and friends.

    While they are all AMAZING gifts, I have to say the best is my son. Yeah yeah, I know. You've probably all heard that before, but wait. My story is different.

    I have been through 7 miscarriages. Yes, you read that right. SEVEN. The first one was about 16 weeks along. The other 6 were before 11 weeks. Spontaneous Abortions is how Doctors refer to them. I hate that term. I didn't CHOOSE to lose those babies. My body did, and it ripped my heart out every.single.time.

   It got to the point where my doctor told me, I may never be able to carry a child to term. I was diagnosed with ovarian cysts at the age of 13 and struggled with them, but other than that, they couldn't find anything medically wrong with me.

    Until Liam. Liam was conceived during Hurricane Katrina. Yep, you read that right too. No power for days, equals bored people! I found out on my brother's birthday that I was pregnant. I was scared to death.

    I made an appointment to see an OB/Gyn. As soon as I told them of my previous miscarriages, I was scheduled to see a high risk OB/Gyn. I had every test under the sun. While we waited on results, I was told to take it easy. At 9 weeks I started to bleed and was rushed to the ER.

   My husband and my best friend in tow, we waited for what seemed like hours, when it was merely one. They brought in an ultrasound machine. Here I am, feet in stirrups, a Doctor, a nurse, the US tech, my hubby and best friend at my feet. The Dr. is talking all hush hush. I can feel panic start to course through my body. My hubby and my best friend are standing there with their mouths agape. NO ONE IS TELLING ME WHAT'S GOING ON.....

    Then I hear one of the most beautiful sounds in the world. I hear his heart beat. It sounds like a train roaring down the tracks. I am sent home on bed rest, and after going over all my testing, they tell me I have a clotting disorder. They send hubby to the pharmacy for aspirin and tell me to take it every morning until 32 weeks.

    Aspirin! Aspirin saved my pregnancy! I went to a high risk OB/GYN weekly through my pregnancy.  Hubby rented me a hospital grade dopplar, so I could check the baby's heart beat every day. I was on bed rest, and if I wasn't throwing up, I was chilling out.

    When we moved from Alabama back to Pa, I had to find a new Dr. By this time I was 20 weeks in. The new high risk was quite a drive, as we live in a very rural area. So I only saw him every other week. Long story short, I delivered around 36 weeks. I became pre eclamptic and had to be induced. But other than that, it was a normal delivery and I had a beautiful baby boy to be thankful for.

    He wasn't a Christmas gift though, he was actually my mother's day gift that year, as I had him just 2 days before. (Though we moved home in December and we drew a bow on my tummy and presented it as our gift to our parents.) I bawled like a baby when they laid his little body on my chest. I silently thanked God for this miracle.

    So now you know my story, or at least part of it. If you follow us on facebook, you know my boy is autistic, struggles with biploar disorder, SPD, ADHD, OCD, ODD, and anxiety. You also know I embrace him and all his quirkiness. This is why!

     I don't care if he's autistic. I don't care that he struggles with all these labels. (I mean, I do, but I don't love him any less.) I care that he is mine.

     So when I hear people say they hate that their child is autistic, I get angry. Not because I don't think you have valid feelings. Let's face it, your journey is different than mine. I hate it, because I know there are other women and men out there who want nothing more than a child to love. We have that. We were given that blessing. Even though our journeys are hard, we still have them. We have something they long to have. We have something to be thankful for.


    You see, my greatest gift didn't come from a store. It isn't a thing. My greatest gift is my son, and I will always treasure him. Through the good, the bad and the ugly days of autism and bipolar. He is my "Miracle Man!"

Exclusion Rips My Heart Out

I sit at the kitchen table. Peeling and slicing apples for pie. Liam
is in the other room, happily playing games on the computer.
He's quiet. He's happy. I'm enjoying the "down" time.

I gaze out the window at the freshly falling snow. I admire the beauty
of the trees covered in  white fluff. I begin to hear
children laughing. Children screaming. Children having fun. Then I see
all the neighborhood children, dragging sleds and
embarking on the trek to the hill. They are going sledding.

A tear creeps from my eye, and I wipe it before it rolls into the
apples. Before I know it, it's followed by more. I am crying.
Silently I weep, while in the other room, my son has no clue as to my pain.

No one knocks on our door to ask Liam to play. No one thinks of
including him. This rips my heart out. Today Liam has no clue.
Other days he asks, "Momma, how come I always ask kids to play (sled) with me, but how come they don't ask me to play (sled) with them?"

You see, he knows. He knows he's not included. He knows he's
different. He knows the other children know this.

So even though, at this moment it isn't phasing him, it's enraging me.

I shove the feelings down. I bury them deeper. Liam begins chatting
about his game. His current perseveration is this game, so it's all he talks
about. I start to wash the dishes.

Now the children are heading home. Still laughing. Still happy.
Walking through my yard to get home. They don't need to walk
through my yard. It's actually the long way home.

I want to scream at them. I want to tell them to get the hell out of
my yard. But I don't.

I don't because they are just kids. Even though these are the kids
that call my child an "autistic r-word." Even though these are the kids
that call him gay. Even though these are the very same kids that make
our lives hell in the warmer months, I don't say a word.

I keep quiet because it does no good. I keep quiet because they are a
product of their environment. I keep quiet because they are kids. Just kids.

I have reached out to them. To their parents. It does no good. They
still bully my child. So, even though I know my son is
better off NOT playing with them, it still rips my heart out.

To have a child who's not wanted. Not included. Not cared about. It
hurts. It rocks you to your core, and it hurts like hell.

This life isn't always easy. For them, or for us. But we need to keep
on, because some things will never change.

I put a smile on my face and I move on. I push the anger down, for
another day. Because today I don't have the strength to
face it. Today, I just want to smile.

Sensory Stocking Stuffer Ideas for a buck!

    If you read my letter to a Good Samaritan, then you know what our financial situation is. Let's face it, money is tight for everyone. We have to save it where we can.

    One way I do that is by shopping at our local Dollar Tree. I'm sure you all have one in your town. They have EVERYTHING! Am I right?

    What some people don't know is all the sensory stuff they have there. Okay, pet peeve of mine is places that sell "sensory items" for an arm and a leg when you can get the same thing, or something similar for next to nothing else where.

    So what I decided to do was to go online and collaborate a list of sensory items that would make great stocking stuffers for the seeker in your life.

**NOTE: My Dollar Tree actually has even more sensory items such a "floam" and pop toobs, but I couldn't find them on their web site. Also, not EVERY Dollar Tree has the same things, so products may vary in your store. You can order online, but the lowest quanity was 6 of each item**

Without further ado, here it is!

Check out all these AUSOME items! One thing I want to point out is Theraputty. That stuff is pricey! Why not buy some putty from the Dollar Tree, and add your own items to it for kids to manipulate?

Here's a break down with links to make this even easier for you.

    Spring Toy (Slinky)

Stretchy Fidget Balls

Liam's favorite sensory item!

Fruit Scented Balls

A toy to squeeze and a toy to smell ;)

Bouncing Putty

Liam LOVES this stuff. I always have it on hand!

Super Putty

Also a favorite of Liam's

Dough (play dough)

Who doesn't love play dough?

Fuzzy Monster Friends

How cute are these guys?

So there ya have it. A ton of sensory fun for just a few bucks. Head to your local Dollar Tree and see what goodies you can find!

**Dollar Tree did NOT pay me for this post. I am just trying to help out other Special Needs Parents**

Tears in Heaven

    A year ago today, I got a call that no one wants to get. My beloved papa Ross suffered a massive stroke and was rushed to the nearest hospital. (which happens to be in Maryland as they live on an island in Va) The prognosis wasn't good. There weren't a lot of details. I became numb.

    While my mother gathered her wits, and some necessities, my father and Pita took her to the airport. She got an emergency flight out to get there quicker. They rushed my papa into the OR, but even that was in vain.  By the time all of this happened, it was the next day. Call it fate, but my mom happened to be able to meet my aunt on the connecting flight in Philly, so they could go the rest of the way together. That evening, after finally arriving, they joined my gram and my papa.

    I rushed over to my father's because my dad is lost without my mom. I had started cooking him meals as soon as I knew she was leaving. She called us with an update, and said it wouldn't be long. I couldn't even tell him goodbye over the phone because when he was spoke to, his blood pressure would sky rocket and his oxygen would bottom out. (his living will stated he couldn't be sustained on life support, so Gram only kept him on so he could say good bye to his girls.)

                                                        I was devastated.

    Knowing there was nothing else I could do, we went home. Just before we got out of cell service my phone rang. It was my dad. He told me, the three said their good byes and my papa went to be with our Lord. I was thankful in that moment that he was no longer suffering, but I was angry. It was so sudden. He was seemingly healthy. He had been fishing with his buddy all day, and came home and that was it.

    The darkness in the car was a God send, for I hate people to see me crying. I turned the radio up a bit and wept. I had only 10 minutes before we would be home, and Liam can't stand to see me cry. (Supposedly autistics lack empathy, but not my kid.)

    I explained to Liam that great papa was gone. He knew the outlook was grim. We prepared him from the get go. His therapists were even ready with a grieving plan in the event that he needed it. He didn't it. Oddly, my son is sometimes so much stronger than a child should be.

    Out of nowhere, tears would start to slide down my cheeks, and I'd try to wipe them away. Liam would notice. He would stop what he was doing to comfort me. He's always been a little man in that respect.

    At this point my father was losing it. He's never been away from my mom, only ONE time in their almost 30 years of marriage. He wanted to be with his wife. Comforting and consoling her. We decided that we would drive him down in his car. We would stay just two days and come home with his car, and he would come home later with Papa's truck.

    The trip was long. Much longer for my father. We finally arrived in Virginia, and gram, mom and Aunt J seemed to be in a great spirits despite. It was a hard couple days. I was afraid to say the wrong thing and make more memories for my gram or my mom. I stayed pretty quiet, just taking it all in.

    For Liam it was exciting. We don't go on trips often, let alone so far. We were staying in a hotel. We took him to see the beach (even though it was freezing.) I said my goodbye to papa on that beach. That was where his heart belonged. He and gram vacationed on this island, LONG before they lived here. Finally retiring to their dream town. My papa spent the majority of his days fishing the surf. Gram in her chair, reading in the sun.

(Papa and I circa 1989)

    We went back to the island this summer. This time with my sister and my brother. It was a melancholy experience. Seeing his office, where his truck sat, and where his boat rested, was hard. Pita calling gram on speaker phone to go visit her, and the machine picking up, with HIS voice, that was soul crushing. For a second my heart stopped. It was like I forgot he wasn't with us. I lost it.

  The beach was different. It was like he was there. Watching over us all as we frolicked in the surf. Smiling down as we laughed and enjoyed each other's company. (the first time we took Liam to the beach there, he was not quite 2. Poor papa was a nervous wreck watching him run to the waves with wild abandon. And the quietest, kindest man that I have ever known, actually cussed at some fishermen for fishing to close to his grand kids and great grand son. I almost died!)

    The one thing Liam wanted to do more than anything that vacation was to fish. To be like his great papa. And fish we did. All but one day that child had his pole in the water. Of course, great gram brought him his very own deep sea fishing pole. I know my papa was proud!



    Liam is now in love with that little island. And so am I. Grammy is still there, with my aunts. But so is grandpa. His heart, and his memory resides on that little island as well. As I sit typing this, tears pulsing in my eyelids, I long for the day when I can visit him again. When I can sit with grammy in the sun, and listen as she tells us stories of their time together.

In loving memory of Papa Ross.

Forever in my heart