Tuesday, December 30, 2014

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.
 

Sunday, December 28, 2014

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 bullyboyhectorintimidator

(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.


Sunday, December 21, 2014

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.



Monday, December 8, 2014

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!"



Wednesday, November 26, 2014

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.







Monday, November 24, 2014

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)













Liam's favorite sensory item!


A toy to squeeze and a toy to smell ;)


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


Also a favorite of Liam's


Who doesn't love play dough?


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**











Tuesday, November 11, 2014

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.


video

In loving memory of Papa Ross.

Forever in my heart



Thursday, October 30, 2014

A thank you letter to a good samaritan

 I know Halloween is tomorrow, but I'm already stressing about Christmas. Already hoping and waiting for the call from Grace Connection. When it comes, I will forward this letter with our Christmas card.

    Dear Good Samaritan,

    Let me start by introducing who I am. My name is Courtney. My husband and I have an 8 year old son with autism and then some. Our little boy struggles with more labels then a clearance item.  I have many chronic illnesses. My husband has more metal in his body than bones. I know that the church doesn't tell you who we are. I know they don't tell you our story, for confidential reasons. I am reaching out to tell you our story, because I want you to know.

    Christmas is my favorite holiday. Full of magic and wonder. Love and family. Yet every year, I dread that count down.  Paying our bills is a stretch, so of course, buying presents for our son is something that isn't possible. I worry that he won't, get a "visit from Santa," because I worry about how we will put presents under the tree.

    My son doesn't worry. He believes in the magic of Christmas. Every year, the week before Thanksgiving, he starts in about the tree. You see, part of being autistic is their mind fixates on something and then hyper focuses on it. So it is around this time, that the Christmas fascination begins in full swing. (He starts his wish list before Halloween though.)

    We of course have a fake tree because we can't afford to buy a real one. But it's a little tree, and we love it for it's memories. So with tradition, the day before turkey day, my son and I get out the tree and assemble it. He then helps me string the lights, and we plug it in. Making him wait until the next morning to decorate is a chore, but he is getting better at knowing why we wait.

    Thanksgiving morning as we watch the Macy's Thanksgiving Day Parade, we as a family, decorate our tree. My son is all a chatter about Santa coming soon. He is ooing and ahhing over his special and most prized ornaments. He is in his glory.

    We too are happy. But we are still wondering. Still praying, that our family has been "adopted" by a good soul such as yourself. Of course, our son doesn't know this. As the days turn into weeks, and we run our errands, each time we see a Red Kettle Bell Ringer, my son gets all excited. He gathers all the change in the car, and crams it into his pockets. He drops a lot because his motor skills are off. He gets upset with himself. Never the less, we gather it up, and he proudly deposits it into the kettle. His face literally glows with pride. So does ours. We may not have a lot, but as the saying goes, together we have it all. We can't afford a lot, but we know, and have taught our son, about the good that the Salvation Army does for others. He never forgets.

    Then we get a call from the church. Our prayers have been answered. A kind soul, an anonymous good samaritan, has chosen our family to help with Christmas. What a true blessing. Each year when my husband picks up the boxes, there are presents for the ENTIRE family. Stockings stuffed to the gills with goodies and small toys. (perfect for little ones with sensory and motor skills needs.) And each year, we cry in secret. In sadness, because we can't make Christmas magical, but also in relief that someone else, someone who doesn't even know us, cares enough to make it happen.

    I thank you. I thank you for the relief. I thank you for caring. I thank you for making our holiday so special. For answering my son's wishes. I can't yet tell my son about you. He's 8 and he still believes. You know how I know? I know because he said to me the other day, "Momma! I know that Santa Claus is REAL!!!!! You know how I know?"

    I reply, "no buddy, how do you know?" and he looks at me, with his chubby little cheeks and his adorable little grin and replies, "I know 'cause we are poor, but I still get presents. So that means that Santa HAS to be real!!!!"

    I smiled and walked away. I had to "go to the bathroom." I closed the door. I turned on the faucet to drown out my noise, and I cried. I cried because my son knows we're poor. I cried because he still believes in the magic of Santa. I cried  because of you. Because of your love and kindness for our family.

    I'm not telling you our story for sympathy. I'm not sharing this for attention. I am reaching out because from one human to another, I want YOU to know, just how much, what you do means to us. I want you to know that we are thankful. We feel blessed by your kindness. You are keeping the spirit of Santa alive, for a little boy who truly deserves the world.


Thank you, from the bottom of our hearts,      

A Family in Need
















                                                                                                                           Liam last year with some sensory toys from Santa
                                                                                         

Wednesday, October 22, 2014

We don't get sick days

    When you are looking for a new job, one of the things all people consider is the amount of vacation days, personal days or sick days that are available to them. However, when I was expecting my son, no one gave me an outline of what to expect. What benefits were available. No one said vacations will never happen. Personal days, let alone personal time to take a pee would be a joke. And sick days? Mom didn't tell me I wouldn't get sick days!

    Add special needs to the mix. Even if you CAN sneak away for a minute to use the bathroom, the entire time you're sitting there, you're wondering what your precious angel is getting into. Rare occasions when your angel is sleeping and you try to take a quick shower, you wonder the entire time if angel will hear you, wake up and get into something. Or worse yet, try to unlock the door to go for a walk alone. How about vacation? IF you can afford this luxury, it's not really a vacation. Let's face it, a new place offers new worries. The unknown is uncool for our kiddos and for us. So now we must pack for every what if, because we need to be prepared.



 



We took a vacation this year. This was JUST Liam's stuff (and not counting all his foods or the all the beach stuff we packed for him)











     Now add chronic illness to this mix. (I have many, but let's just use fibromyalgia) There are days I can't move. Well okay, I can, but to do so causes excruciating pain. So I don't want to. I don't get a sick day. I can't look at my son and say, "Mama can't do that today buddy." Nope. No way. No how. I must persevere. I must ignore that I feel like I was hit by a truck. I must hide my pain face. (You know, those experts that say our kids aren't empathetic? Well, we all know how wrong they are.) My son can't see me in pain or he will break down. He will then perseverate on me and if I will be okay. So you brush away the tears. You bite back the pain, and you deal.


    As a matter of fact, I have been in a flare for 3 days now (if you could see my house, you would be appalled.) Anyway, I have been keeping him occupied with his lessons, board games, video games, etc. I play with him from my chair. He kept asking to carve one of his pumpkins. How could I refuse? So while all I wanted to do was lie in bed with a heating pad and take a nap, instead I gutted a pumpkin (He doesn't do pumpkin guts. Sensory yuck for him) and sat with him on the floor while he carved it.



So I guess what I'm getting is, when I was "preparing" for this gig as a parent, there were MANY things I didn't consider. Many things I wish I would have asked about. Special needs parenting wasn't even on my radar, so that blew me away. Regardless, I wouldn't trade this "job" for the world. I don't get many vacations. I don't get personal days. I don't get sick days. What I do get is unconditional love. I get to make a difference in the life of a child, and that's enough for me.

Thursday, October 16, 2014

Why I hate functioning labels

    I do. I despise functioning labels. I don't care for labels at all, but as autism parents, we all know these labels get our kiddos the help that they need. The functioning labels are the worst though.

  They are designed to show where our children are on the spectrum, yet they are actually limiting our kids.

    Here's an example of why I hate functioning labels. Liam has been diagnosed by four doctors as being autistic. (as well as Bipolar and MANY other things. He has a full plate.) Two of which said he is high functioning. The other two said he was moderate.

    Why two different functioning labels? Let me tell you. Liam's IQ is 120.  He tests gifted in Math and in Vocabulary. YET, his reading comprehension is bad. He can read to me, but he can't tell me what it was he just read. He is considered learning disabled in that area. Even though he spoke early, his speech was so hard to decipher, it was considered as a speech delay.

    So it would seem that based on his IQ and some of his test scores, he is "high functioning." But, based on his "disabilities" and behaviors, he is considered moderate.

    Liam has also learned to "pass." For those of you not familiar with the term, "passing," it is when an autistic is able to pass as "normal." There are some days where Liam can play with his peers or be in a public setting, and no one would know he is on the spectrum. However before long, "passing" becomes too much work and a meltdown ensues. There are also days where he doesn't even try to pass. It seems that at 8, he has realized that around the people that accept him most, there's no need to pass. So around new people or in public is when he attempts passing.


    So you see, Liam is literally, all over that spectrum. He doesn't fall into one convenient slot. The more parents I speak to on my page, the more I have learned that Liam isn't alone. So why do doctors and therapists insist on using these functioning labels? Even though the DSM V caused an uproar by removing "Aspergers" as a diagnosis, knowing what I know now, I have to agree. I am glad it's gone.

    You know what else I don't like? I don't like when I am speaking with other autism parents and they act like Aspergers makes their child better than mine. Does it matter? It's all technically the Autism Spectrum now. There is  NO Aspergers. So please, don't use that term to one up other autism parents. It hurts!

         Autism isn't a competition.

    I don't care where you or your child fall on the spectrum. My child doesn't care where you or your child fall on the spectrum. People are different. Autism is different. Not one of us is the same, neurotypical or otherwise.

    So in my world, there are no labels. Last year I was told I was on the spectrum. The term she used was HFA. No. I am NOT HFA. I am simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.

   Basically, my autism is my autism. Liam's autism is his autism. And your autism is your autism. No functioning labels, just autism.

Tuesday, October 14, 2014

A slap in the face....

    I don't like being slapped in the face. Physically or metaphorically. Yet, this is life and let's face it, it happens to ALL of us. Today my slap in the face was delivered through the phone.

    If you follow me, you know how I am about the phone. I don't answer. I don't call out on it. When it rings I become anxious. Why you ask? Because the older I get the MORE socially awkward I become. I get so anxious when I'm on the phone. I don't know when I should speak. I'm afraid of cutting someone off. I run out of things to talk about. Or the most annoying, my fibro fog takes over my brain and I forget what I was saying altogether! I digress.

    The phone rang today. I let it go to the machine (yes, we still have a machine. I refuse to pay for voicemail that I also hate to check) and heard it was Liam's cyber school psychologist. I was expecting this phone call, so that really helped. I answered and we began chatting.

   Side Note: I have been home schooling Liam since kindy. (Those that have followed our journey know that he only attended 4 days of kindy at which time we had to pull him due to a total autistic regression. He was officially diagnosed right after that.)

    She was returning my phone call because we have been playing email tag for a month or more. Liam has been reversing letters and numbers from the time he was a toddler and learning to write. They told me it was nothing to worry about. It would correct with age and was normal. However, our life isn't "normal," so of course, it has only gotten worse. Not only does he invert his numbers, write them backwards, and write his letters backwards, but when he writes, he starts at the BOTTOM and works UP. I correct him. He gets upset. "This is how I have to do it mommy!" Thus the reason for contacting the school.

   Moving on, the metaphorical slap is coming. So the psych and I talked about the pics I have sent her of his writing. She said there was no real "test" for dysgraphia and dyscalculia, only dyslexia. Then she went on to say, that judging by his reading comprehension scores, and by the writing samples, they believe him to have a reading/writing learning disability.

                                       There's that slap!

    I don't care who you are. If you tell me that hearing those words spoken about your child ISN'T, a slap in the face, then you're full of shit! I KNOW he has problems. I am with him 24/7. But HEARING it from another person, or SEEING it on an IEP is a whole other story.

     This child excels in math. To the point that it amazes me. His vocabulary and verbal context is amazing. (as long as it's a good day. on bad days, not so much)  He can also read great. Just don't expect him to be able to tell you WHAT he read. He can't. He just can't.

    So even though I knew this. Even though I expected to hear something along these lines, it still hurt. It seems like every damn time we turn around, someone is adding another label to him. I sit and wonder, how much one little boy can over come. How much until he breaks? How long until I can't teach him any more? What if I HAVE To send him back to brick and mortar school?

   Anyway,  he is now being re-evaluated by an OT and will be receiving services from a NEW OT. The one he has been working with assures me, "his writing looks fine to me." Yeah, okay lady. It looks great. Check it out!






NOTE: I'm NOT posting this to humiliate or demean my son. I am posting this because she is an Occupational Therapist and yet she sees NOTHING wrong with his writing. This is just a taste of it. Some are so much worse, but for his sake, I will not post them.

















   Oh and they are going to get him a talk to text program for the computer. Also, they are adding hours of OT for him too. This is great. Not as far as money goes because we all know that gas prices are ridiculous. We live in a rural community and travel 30 minutes one way to receive services. But he needs these services and like always, we will find a way. Our job is to make sure he gets what he needs to help him be a successful adult. And we will never give up that fight. Hurtful labels or not. <3














Monday, October 6, 2014

The Look

     Have you ever been out in public, talking to someone about your child's autism, and they give you the look. Or you run into a high school chum and when they ask you what you've been up to, and you tell them, "the autism life," and they give you that look?

     You know what look I mean. The "wow, I'm so sorry," look. Now, don't get me wrong, I'm not trying to condemn someone for having a heart. But that look! It makes my stomach flip, my heart skip a beat and for a split second, makes me angry.

             Hey, I'm only human.
 They are my feels and they are real.

I'm not trying to knock someone for being empathetic. I mean, yes, I would much rather you have empathy for our family, than for you be afraid of us, or hate us. But, it still hurts. It's still a blow.

    So I was thinking. Do me a favor. Do other autism or special needs parents a favor. Look at us with admiration. Look at my child and think, "Damn! That kid is kicking autism's ass today!" Or even, "Wow! That kid is defying Bipolar Disorder! Look at him! He's so happy. Working so hard at making the most of life!" Or hell, even tell him that.

 


 Admiration ROCKS!!!! It might just give us or our kiddos the extra nudge we might need that day. Caffeine, sugar, adrenaline, that only works so long. Sometimes we need moral support. Sadly, not every special needs parent gets that support. BE THAT SUPPORT!

 




 I guess what I'm saying is empathy is good, but keep it in check. Don't feel sorry for us. Some days are hard. Shit, some days I just want to crawl back into bed and cry. Some days I don't even want to get out of bed. Then I see that face. That little face that depends on me. That little face that looks to me, to help him face life. That little face that stole my heart, and taught me what true, unconditional love, really was. In the end, we're really not that much different from you.  Our struggles are different, but our needs are much the same.





Saturday, September 6, 2014

Hurting the very people you claim to advocate for is EVIL!

We're getting ready to head out on a MUCH needed vacation. We haven't had a real one in years and are so thankful we get this chance.
Those who follow us know what a ride the last few years have been. It's going to be great to relax and just enjoy each other and the ocean for a week!
But, I have a story to tell. Writing soothes my soul, and I need to get this out of my heart before I can move forward and enjoy myself and my family.

So here goes....

This happened yesterday. Someone I called friend. Someone I loved. Someone that claimed I was her friend. Someone that claimed to love me. Well she showed her true colors, and she proved I was never her friend.
I was starting to notice that this person was only having contact with me when she wanted info. I'm a straight up honest person, and she knows that. My aspie brain wants FACTS, not half truths. Not a run around! She would message me and in a sneaky way, be pumping me for info. THEN, she would act like she truly cared about my family and I,  after a  few questions, and once she got what she wanted, she wouldn't speak to me again.
Well yesterday I was awoken by yet another pm from her. Prying for more info. I was starting to get wise to her ways, as have other mothers she has done this too. She of course was wanting info. Then, when she realized I wasn't giving up anything, she was being more vague, telling me to forget it.
Look, if you come to me and say, "so and so said this about you." Or,  "so and so said you said this about me," you damn well better be able to tell me what I supposedly said. First of all, I don't make a habit of talking about others behind their back. If I say something about you to someone else, it's something I will say to your face!
When I finally had enough and caught her in a lie, and asked her to clarify, she UNFRIENDED and BLOCKED me!!!!!
That right there says guilt! I was crushed!
I sent screen shots to my friends. And what they said floored me. It was what I have been thinking for months, but didn't want to admit.
She was using my straight forward, aspie, literal way of thinking against me. Taking advantage of my honesty for her OWN AGENDA!!!!
That's right, I'm on the spectrum. She knows it! And she was using it for her own benefit!
Who does that? She's an autism parent!!!!! How would she feel is someone did that to her child????
I was broken yesterday. I even cried. Now today, I am livid!
She calls herself an advocate and instead she used someone that she claims to advocate for.....
And to back up all that happened, enjoy the screen shots. I'm in blue, she is in white.
So do me a favor. Have friends because you like them. because you relate to them. Because you were school friends. DON'T have friends for your own agenda. Also, ppl that you are friends with may be on the spectrum. Honor that. Support them. Don't use them.
I know you guys won't  But I feel it needs said.


Thursday, August 28, 2014

To medicate or NOT to medicate

WE ARE USING MEDICATIONS~

Yes, you read that right. the mother who was vehemently against medicating children, has put her child on meds.

I was always against medicating my son. He was diagnosed with ADHD before he was diagnosed with Autism, and I told the pediatrician from the get go, NO MEDS.

As the years have gone by and as I have watched my child struggle, pita and I started to actually entertain the idea....

I still wasn't sure. That's a BIG step. But when Liam had his last manic episode, and our choice was inpatient over 2 hours away or home with an appt with the child psychiatrist, the realization was that medicine was going to need to be administered.

It was with heavy hearts that we accepted a script for Concerta, and one for Hydroxyzine for Liam. We were told that these are the first step. If they don't work it will be Zoloft, and then maybe even anti psychotics. So we started with the lesser of evils.

I was nauseous when I gave him his meds that first day. I watched him like a hawk. I mean seriously, Liam kept asking me to stop staring at him!

                               That day I saw a miracle.

  My son was concentrating. He was staying on task. He was playing something for more than 10 minutes at a time. He wasn't angry. He wasn't having constant meltdowns. He wasn't stimming constantly. We weren't walking on egg shells. (note: I don't mind that he stims, but sometimes he gets carried away (head banging) and I do fear it will hurt him)

We went from three meltdowns a day to maybe 3 a WEEK! Instead of bursts of anger, he cries. (I don't like to see him crying, but it beats keeping him from banging his head off the walls when he is upset)

I was afraid to actually come forth and admit that I too, was giving my son medication. So many people look down on those that medicate their children. I myself hated to hear that children were being put on Ritalin or Adderall. I didn't condemn anyone for it, but I hated to hear it. In my mind it was like people were giving their children legal cocaine. How could that be healthy?

And then my son went down hill. so fast in fact, that we really had no other choice. It was then that I realized that these medications are made to HELP our children. His doctor wasn't just throwing a script at us and rushing us out of his office. He was reaching out and telling us what he thought would help our son lead a happy, healthy life.

We just went today for a medication check up and when we told Dr. S all the good that has come from these two medications, he was smiling from ear to ear. He said that sadly, he doesn't always hear that it helps a child like this. He was genuinely happy that Liam is doing so well. We are happy. Liam is happy.

While I still believe wholeheartedly that medication should ALWAYS be last resort, I am now embracing it.

Not for me. Not for my life, but for him and for his life. He is happy. He is healthy. He is thriving.

My job as his mother is to make sure of that.



(I am NOT a doctor. I am NOT saying medication is the right step for ANYONE or ANY CHILD. I am saying that it should be last resort, but as parents, we shouldn't feel guilty for helping our children have better lives)

Saturday, August 23, 2014

Psychic Chemotherapy

So I am reading an old but beloved book. I adore it. I read it almost every year because I enjoy it so much. I have read it at least 10 times, and this particular quote never stood out to me...... Until now.


When I came upon this quote (Odd Thomas by Dean Koontz page 134) I stopped. Not my normal stop. (by that I mean, when I'm stressed or over tired, my OCD tells me I must read certain sentences 4 times. It sucks, and sometimes takes me forever to get through a book.) I digress. I stopped. This time I reread the sentence because it was resonating in my heart, NOT because my brain was being a jerk and messing with me.

Then it hit me. When Liam has his manic/depressive episodes, I don't write. I have to force myself to get on facebook. For a few reasons I guess. 

One of which is, I shut myself off from the world. We exist in our own tumultuous vortex and leaving it at times like that is like, trying to free yourself from the grips of an F5 tornado.

Another reason is, though I love reading how my friends and family are doing, and I love seeing the fun times you're enjoying; when we are in that vortex, I don't want to see your happiness and sunshine. It makes our Hell seem much more harsh and cruel.

Not until the last time did I actually go on ALFL and ask for prayers. And something much more profound happened. YOU all reached out to ME, and you made the hurt, hurt a little less. Still, I couldn't bring myself to write about what was happening. I couldn't blog about it. I couldn't really even go into detail in a status update....

Up until I read that passage from Odd Thomas, I thought I was avoiding my blog because I didn't want to have to relive those tragic days. It was then that I realized, I was wrong. YES Pita, I said I was wrong.

And where I was wrong, Little Ozzie (well actually Dean Koontz since LO is fictional) was right. I know this because, when I was finally able to blog about Liam's manic/depressive episode, when I finally let it all out, it was like a weight was lifted from my shoulders.

I was no longer carrying that sad journey in my own heart. I opened up, and I shared it with the world. And it was enlightening!

NEVER again will I avoid my blog in a time of need. My blog is here to cleanse my body and mind from  "psychological tumors." All the cruel happenings of this world. From all the wrongs. All the not fairs, and all the what ifs.

My best advice as a special needs mother?

Find an outlet. For you. For your child. Blog, write poetry, paint, sketch, compose music. It doesn't matter how you do it, what matters is that YOU DO IT.

You release the negative and your heart will feel so light!

Thanks Dean Koontz for putting my epiphany into such meaningful words!

<3 <3 <3 <3