Don't Punish a Meltdown

    It's been awhile since I've written a real slice of life post. Well here it is. As it often happens with the posts of these kinds, the inspiration came from an unlikely source.

    How many times have you been told, "I would punish my child if he/she acted like that!" when someone witnessed one of your child's meltdowns?

    So we're rewatching Stranger Things seasons one and two on a loop lately. (I think Liam is ready for season three and tired of waiting, lol.) And something dawned on me. Wait......

SPOILERS AHEAD! PROCEED WITH CAUTION!!

     In season two, episode 4, when Elle and Hopper get into a fight about her breaking the rules, it was eerily reminiscent of watching an autism meltdown. Let me preface the rest of this as saying, NO I DON'T THINK ELEVEN IS AUTISTIC. Any fan of the show clearly knows, she has psionic abilities. And while our kids have their own "superpowers," thanks to Autism, we know they can't manipulate objects with their minds.

    However, if you watch this clip, you may see the similarities I picked up on. When our kids (or us for that matter,) have a meltdown as a result of an argument, there's a point at which you stop. You stop yelling, speaking, and probably breathing. Because WE know that if we don't, we can ignite the meltdown even further.

    Okay, so in the show, Elle isn't having a meltdown per say. She gets in trouble with Hop for disobeying his rules. This leads to an argument. However, because he too is angry, he keeps pressing her. Yelling. Screaming. Punishing her by taking away the things she loves. Now, I'm not at all saying kids shouldn't be punished when they misbehave or break rules. What I am saying is that we must learn to step back.

    We know that Hopper lost his daughter at a young age. So he hasn't been a daddy for a few years. Now he's raising a tween. A powerful tween, that is full of hormones, emotions, rage, and heartbreak, from a life lived in a lab. So not only is Hop out of date on parenting, but he's never had to father a child of this age, or with this background. 

    Okay, so let's think of the people that tell us our kids should be punished when having a meltdown. They are Hops. (Maybe not as sweet, because let's face it, some people suck.) What I mean is, they may not be parents, or aren't parents to special kids. So they don't realize that we can't yell, scream, and punish our kids when they are having a meltdown.

    We all know that as our kids get older, and they do make mistakes, we need to step in. However, when an argument progresses into a meltdown, we must step back. In that moment, the time for reprimand is lost. Now it becomes a spiral, that we must guide our children through.

    Once they make it out the other side of that meltdown, they're tired, we're tired. Probably still angry or at the very least upset, too. Which means, that now isn't the time either. This is where "we must choose our battles," stands out. Depending on the infraction that led to the argument, and the subsequent meltdown, there may still need to be a punishment. However, that can come later.

    When everyone involved has calmed down, and is thinking rationally, is when we should sit down and talk. Explain to our autie what they did wrong. Why we were so upset. And then give the punishment. However, be clear that you aren't punishing for the meltdown, but rather the mistake the child made which led to the argument and spiraled into that meltdown. 

    So my whole comparison for this post is this: When people see our kids having a meltdown. They're screaming, crying, maybe throwing things, breaking things, (like Eleven in the clip above,) or becoming self injurious, they think our kids are being brats. Those people would react much like Hopper. However, they don't realize, that in that moment, our children are out of control. But WE DO. And that's all that matters. So choose your battles, and bide your time. You got this. (And be thankful our kids don't have psionic abilities! Can you imagine that? We would never have windows, doors, and probably walls in our homes.)

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Save a Seat for Mental Illness

    As a parent, a child's birthday is such a bittersweet time. Celebrating their special day with family and friends is always nice. Yet, there seems to be a part of us that wishes our children could stay a certain age forever. For us however, planning these big days is so much more.

    Typically, planning a big day means finding a venue. Do you have it at home, or at the park, maybe at a place designed for kids? (Of course money is usually a factor here.) Then, it's letting your child pick their theme for plates and all the other fun stuff that goes with their special day. So exciting right?

Not for us.

    I mean, it is, but it isn't. You see, Liam isn't just Autistic. Oh no. Apparently that alone wasn't enough of a challenge. He has many other comorbids, but the hardest is the Bipolar Disorder. This happens to remind us every year around his birthday that it's here, and it's in charge. As he gets older, it seems to become worse.

   His eighth birthday was spent in the Emergency Room, because his new med cocktail included Risperdal. He had severe reactions to it, including Dyskinesia, swelling throat, Parkinson's like tics, abnormal muscle movements and more. Thankfully we caught it quick enough that they were able to administer some counteracting medications and in a few hours we were headed home.

   His ninth birthday was terrible as well. He was in such a deep depressive cycle that he wasn't even really "there." We skipped having a party and took him to his favorite swimming hole for the day. We thought the fresh air, and nature fun would help. It was super hot that day, but all the swimming, fishing and catching critters did nothing to help. It was like celebrating with a zombie. I have two pictures from that birthday, and I can't even look at them. I can see the pain in his face and my heart just aches.

    So while many families work to plan a perfect celebration of their child's birth, our planning process involves so much more. We need to have a plan in place to cancel the event if need be. Which for us, means letting our guests know that the party could be canceled last minute. (This is especially important as a few of his friends and cousin are Autistic too, and we know how last minute isn't great for auties.)

    If he insists on having a celebration any way (which is fine because why let the BP win,) we have to prepare guests for how he may be. That means letting them now he may not speak. He won't smile. Usually hyper and energetic, Liam will be withdrawn and sluggish instead. When you look at him, he won't "look" like he's there. He will open his gifts with definite lackluster, but not because he doesn't appreciate them, but because at the moment, his mind WON'T LET HIM.  It's daunting to say the least, and important that our friends and family prepare their kids.

    Please understand, I'm not writing or sharing this post for attention. I don't want people to think we want sympathy. I promise you, we don't. What we do want is to educate others about mental illness and children. It's real. It's tangible. It's hell. But we not only survive, we thrive. We just do it differently than everyone else. 

STOP Shaming Autism Parents!

    There's a trend on social media attacking parents like myself, whom write about our lives with Autism. I could point out page names and blogs, but why give these people more attention than they deserve? Instead, I'm going to share my feelings about it.

    First of all, people need to stop accusing us of being disrespectful. They claim that we have our blogs and pages to get attention for being an autism parent, and in doing so, are disrespecting our children. How bogus is that?? (Trust me, I loathe attention. I'm happy hiding out from small talk and people.) I myself, as with many other autism parents I know, started our pages and blogs to tell OUR story. (We aren't here to tell your story. That's your prerogative.) We are reaching out and sharing slices of our lives, to connect with other parents that are walking a similar path. To help ourselves, and to help others.

    Secondly, they claim we are exploiting our children. (Another reason they accuse us of being disrespectful.) Okay, now maybe some people do that, but lumping all of us page owners and writers into that category is, well frankly, it's bullshit! My son is old enough now, that I ask his permission to share certain things. When I started, he wasn't able to make that decision. So his father and I would talk about what it was I wanted to share, and together, decide how to do it respectfully. I have never shared inappropriate images of my son. (Who would with all the pervs out there?) When talking about his severe cycles, I divulge basic information, but I never go in depth with things my son says to me in confidence. We don't tell people where we live. I also don't accept strangers on my personal Facebook.

    Thirdly, they claim that we share too much. That by telling people our story, we're in fact hurting our children. If my son has a rough day, he has a rough day. We are teaching him to own it. Shit happens, to ALL of us! If I choose to joke about it on social media, and let others know they aren't alone in this struggle, how is that hurting my child? He isn't the brunt of my joke. I am sharing to vent. Sharing to make light of a crappy day. That's how we roll in our real lives too.

    We can't sit here, behind our keyboards and act like life is all sunshine and rainbows. That's bullshit, and we all know it. As writers, we are sharing our story to reach out to all of you. These "sanctimommies" need to step off, and worry more about how they are raising their children, instead of how we are doing it. Hell, most of the autism pages I follow are much like mine. They share the good, the bad, sensory fun, inspirational posts, jokes, and more. They are real. Isn't that what we want? Why would we want to read fake crap? Not one of us is a "perfect" parent! I could keep going on about how they're judging us, but I have a life, and so I will stop here.

    One last thought.... We're all muddling through this gig together. Instead of belittling one another, let's raise each other up! Besides, falling off a high horse would be pretty painful, and I for one, wouldn't want to be the wanker that falls off!

Sans Costume Doesn't Mean Sans Money

    Yes we're poor but that's not why he wasn't wearing a costume.

    When i was a kid i can remember the kids in school that barely had a costume on, or ones that came with nothing. We were never rich, but we never went without a Halloween costume. As a kid, I can remember being so angry at those parents. In my immature mind, they were slighting their children.

    Now I'm a parent, and this year my son was the one without a costume. Not because we couldn't afford one. Not because I couldn't make him one. But because he didn't want one.

    With a child on the spectrum and SPD to boot, I now understand that maybe those kids were sans costume for another reason. Maybe they couldn't wear one, or maybe they didn't want to.

    Liam was adamant for the past month that he didn't want to dress up. I was conflicted. Childhood goes by so fast, I hate to see him miss out. Yet I hate to force to take part in something that he doesn't have to take part in. He was sick all week so we didn't talk about it much. Thursday, Friday and even Saturday morning, I kept asking if he was sure. Trick or treat was today fro. 2-4. At 1230 he finally decided he needed a costume. He took the werewolf mask we made the other day (fine motor fun is HUGE in this house) and he tore up some old clothes. He was a "transformed werewolf."

Liam and his mask. This is the only picture he would sit for.

   I was worried people would think we were too poor to do better. I was afraid people would think we didn't care. Then I realized what I don't care about is what other people think. He was happy and who was i to ruin that for him. And so he went out and trick or treated in some torn up clothes, with a brown mask. He only went to a handful of houses and he was done. But he was happy, and that's all that mattered.

    My point is, if u see a kid in no costume, or a makeshift costume, don't judge. You don't know that child's story. You don't know their parents. If they're happy, that's all that matters.

Hope you all had a Happy Halloween.

Autism Parents Do NOT Hate You

Dear "NT" (neurotypical) Parents,

We don't hate you. We don't dislike you. We aren't jealous of you. I think some of us are envious, but never jealous.

Many times you seem to misinterpret our intent. When we say, "you're lucky to  worry about sports, or girl scouts, or sleep overs, college," and so on, we mean it. We know these are big worries.

 When we say we would love to worry about those things, often times, you get bent out of shape. Don't. We don't belittle your worries at all. What we mean is, we would rather those worries, then the sad ones we are faced with.

For a moment, put on some special needs parents glasses. See through our eyes.

We worry because our children often stand out and are bullied. (Not to say that yours aren't, but often times, it's special needs kids whom are targets.) We worry about our children being successful in a mainstream classroom. Getting invited to other children's parties. Being asked to play a school yard game.

We worry about IEP meetings. Therapies. Specialist appointments. College isn't even in some of our children's realm of possibilities.

We worry about what will happen when our children age out of the system. For many of us, we worry about who will care for our children (even as adults) when we pass away.

Some of our children have comorbid diagnoses. (Which means they don't just have Autism.) Many of them also struggle with mental disorders. So now we worry about hospitalizations. Maybe even institutions.

So you see, when we say "we wish we could worry about tee ball," we aren't demeaning your worries. We are saying we wish our worries were the same as yours. "Happy" worries as I refer to them.

Please, when you read our memes or our posts about these issues, try not getting so upset. Try putting on those special needs glasses I talked about.

Parenting is a rough gig. Whether your child is NT or not. We know that. 

Try understanding our worries for a moment.

Sincerely,

an Autism Mom <3

Don't Use "Crazy" as an Adjective

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

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

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

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

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

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

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

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

 



 

Why Must Pain Be Necessary?

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

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

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

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

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

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

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

Because He Cries

Last night was a rough one here at the House of AuSome. Liam got upset with me because he wanted to watch a certain movie and I told him it was inappropriate for him. He got mad. So mad, that he shut himself up in his room to pout. For AN HOUR!

Liam is never too far from me. He won't stay anywhere. He follows me around the house. You get the idea. So I was shocked. I let him pout. He even wrote me a letter on strips of paper.

It came time for melatonin and he still wasn't speaking to me. I waited half an hour for his gummy to kick in, and I told him I was going to bed. He wrote me a note saying he wasn't talking to me, and he was going to sleep in the living room.

Again, I was flabbergasted because we share a room. He can't sleep by himself, and for any of us to get any sleep at all, this was our only course of action. I told him I understood. I bent and kissed his forehead, and told him I loved him. Tears were streaming down his cheeks.

I walked back to our room. As I was standing in the bathroom brushing my teeth, I heard the pitter patter of little feet. Then 2 little arms embraced me with such force, I staggered for a moment.

I looked down to see his face. All red, tears flowing down his cheeks. He started to heave with heavy sobs. I quickly rinsed my mouth and managed to walk him, still grasping me with all his might, over to my bed. We sat, and he immediately climbed into my lap. 

My heart sank. He hasn't cried this hard since his last severe depressive cycle. That was last year. It could come at any time, since the severe cycle always comes around the same time. We are on pins and needles, fearing it could come everyday.

I started softly asking him questions. "Are you okay? Are you still angry with me? Do you understand why I said no? Do you know how much I love you?" He wouldn't speak, only answering with nods.

You see, if he were having a meltdown, I wouldn't be barraging him with questions. I know that would only make it worse. With a dual diagnosis such as Autism, and Bipolar, it's usually one or the other, or one making the other worse. (Example, if he has a meltdown and screams nasty things at us, he sometimes then goes into a depressive cycle because he feels bad for his behavior. Or, if he's in a manic cycle, he is so high energy and stimming off the walls. If that makes sense)

He started pushing against my body to rock him. And so, we rocked like that for a good 40 minutes. The crying became softer, and then stopped all together. I took a moment and I silently thanked God. Seeing your child in a major depressive cycle literally sucks all the life force out of you. I pray everyday that it will skip this season, and we won't have to watch our son in mental agony.

He asked for the Kindle, and we sat and played a few games together. We laughed. We giggled. I kissed his gorgeous forehead. He told me he was sorry. He told me he was sad because he was afraid he hurt my feelings, and he doesn't like to do that. I smiled and assured him that I too, (believe it or not) was a kid once. And I too, had been in a similar place with my parents. 

He handed me the Kindle, snuggled into my arms, and fell asleep. I left him like that for a bit. Staring at his peaceful face. Silently wondering, how I got so lucky as to be his mom. With all the struggles, the good days and the awful ones, I wouldn't trade this child, or my life with him, for anything in this world!

When Liam is going through a depressive cycle, this song always comes to mind.

If He Doesn't Care, Then Why Do I?

  It's a gorgeous spring day here in Northeastern Pa. I stand in my kitchen, in front of the window, preparing
baked potatoes for dinner. I gaze out of the window in a bit of a daze. The time change is still wreaking havoc
on mine and Liam's sleep schedule.

  I see all the neighborhood kid outside playing. Smiling. Yelling. Laughing. Playing together and having a
blast. My heart sinks. My son isn't outside having fun. He hasn't been asked to take part in the games being
played. He sits in the other room, on his computer. Googling and reading about edible and non edible
plants.

  I feel my eyes begin to swell with tears, and I move my work further down the counter. This way, I can't stare
out  the window. In that moment, rational thought takes hold. Liam is happy. He is doing something he likes, and
he's having fun. He's also learning, and it's not forced learning. 

                                So why am I so sad?

  I enjoy time to myself. I would much rather be alone, with a good book or creating something, than to be outside
with a bunch of people, wondering when I should speak, or fearing I may cut someone off unintentionally. I think
that sometimes, as parents, we see what all the other kids are doing, and we long for our children to be taking
part in that too. That doesn't always make them happy.

  Yes, there are times when Liam longs to be included, and that is truly heart breaking. But in moments like these,
when he is perfectly happy being himself, and doing his own thing, why do I long for him to be included, where he
doesn't care to be?

  Sometimes I think that we need to step back. We need to assess the situation, and we need to think.
Is our child happy? Does he/she care that they are alone? Why do I care? If my child doesn't care, then neither
should I.

  So I asked him if he wanted to go outside and play. His answer? "No mama! I'm learning about plants here!"

  Matter of fact, just yesterday as we came into the neighborhood on our way home from town, there were kids playing outside. Liam commented nonchalantly, "Now that all these kids don't like me, or are mad at me, they don't ask me to play. But that's okay. I don't have to worry about anybody bein' mean to me."


  From the mouths of babes folks. Sometimes, the best advice comes from the mouths of babes.

Could Autism Parents Be Contributing To Narcissistic Adults?

     
 Cruising on Facebook this morning, and I saw the following headline trending:


  Children who are overvalued by their parents may develop narcissistic traits, according to a study


It made me think. As  special needs parents, everything my son does,we make a HUGE deal of it! You know what I'm talking about. He tried a new food, we do a victory dance. We reward with his favorite junk food. Writes his first sentence, reward and huge verbal display. Ties shoes for the first time, same thing. It goes on and on. Each milestone that some take for granted, we make a big spectacle of it for our son.


Could we be molding him into a Narcissist? You see, many of our children are left out by peers. They are socially awkward, and playing with NT children is hard because they play so differently. This bruises their egos. So it's our job to boost them up, right?


But what if we are wrong? Take a moment and consider this. Our autistic children are very blunt. They are direct and to the point. So, if we keep telling them how great they are, what hard workers they are, and so on, this could backfire on them in the future. It's not hard to fathom how that will play out when our children are around other children.


I have personally heard my son repeat some praises I gave him. When a particular neighbor bully called him the r-word, my son went on to tell him his IQ score and then ask him what his was. (He knew his IQ score from his latest school testing) The instant he was made to feel less because of his disorder, he pulled that sucker out like a
machete.


Also, when my son has been teased for being clumsy at sports, he'll spout off, "So I know more about computers and video games than my parents!" (Which by the way is true) This isn't how we want our son to be, and I'm assuming, you don't want your child to behave that way also.


Many of us advocates are reaching out to the world. We want them to know how special our children are. How special we are. But in that attempt, are we too sounding narcissistic?


So, while I think we do need to make the milestones our children reach a big deal, I think that maybe going about it differently, would be best. I'm still thinking of how to do that. All I know is, when my son starts to brag himself up around others, we stop him and tell him that no one likes a bragger.


We need to find the balance between ego stroking and narcissism....

A Mom's Insight on Pediatric Bipolar Disorder

My son is autistic. Autism is on the forefront of many media outlets nowadays, so you know what that is. He also suffers from a mental illness. I'm not talking about autism here. I'm talking about pediatric bipolar disorder.

I'm sure you've heard of it. You've probably even heard it joked about. Did you know it affects kids too? Well it does. It steals away moments of their childhood and rips out their parents hearts.

Children who suffer from BPD differ from that of most adults afflicted with it, because they cycle so rapidly. (Cycling is when they switch from mania to depression and so on) *refer to chart* These cycles can occur numerous times in one day.

Have you ever seen the meme that said, "How much do you charge for a ride on your mood swings?" I used to think that was funny. Now I find it offensive. Maybe because I watch my child swing between moods so frequently some days.

Here's the break down of mania vs depression:

Symptoms of mania include:

• euphoria (elevated mood)—silliness or elation that is inappropriate and impairing
• grandiosity
• flight of ideas or racing thoughts
• more talkative than usual or pressure to keep talking
• irritability or hostility when demands are not met
• excessive distractibility
• decreased need for sleep without daytime fatigue
• excessive involvement in pleasurable but risky activities (daredevil acts, hypersexuality)
• poor judgment
• hallucinations and psychosis

Symptoms of depression include:

•  lack of joy and pleasure in life
• withdrawal from activities formerly enjoyed 
• agitation and irritability
• pervasive sadness and/or crying spells
• sleeping too much or inability to sleep
• drop in grades or inability to concentrate
• thoughts of death and suicide
• fatigue or loss of energy
• feelings of worthlessness
• significant weight loss, weight gain or change in appetite

Being a woman, we know how mood swings can be. We live with PMS every month. But this is different. More extreme. A person/child with BPD will go from laughing, and incessantly talking your ear off, to angry, crying, screaming, and so on. They can become violent too. Take 3 or more of those symptoms above, and they happen all at one time. Then the child will cycle to other end. (refer back to arrow chart)

(Now add that to autism. It's quite explosive some times)

People have asked me if I was ever afraid OF my child. No. NEVER. I'm afraid FOR my child. Stereotypes. Negativity towards mental illness. Misinformation of these illnesses especially in children doesn't help either. 

My hope is that by reaching out, exposing myself, sharing our life, I can help spread the word. I hope that even ONE person reads this, and says, "I'm not ashamed of my mental illness!" So they can help by spreading the word. 

I want to help make that change for mental illness awareness. Pediatric mental illness awareness. 

My son is almost nine. We are starting to have more rough days than good. We're working on finding medications that help his BPD and don't hinder him in general. It's not easy. It's rough on him. Rough on us. We've been faced twice with the possibility of hospitalizing him. (once when he was 5 and last spring, he was 7) The nearest psychiatric hospital that can take children is FOUR hours away! So not only do we need more people speaking out about mental illness in children, we need more service providers in all areas. Parents facing the decision of having to admit their children to psychiatric hospital, shouldn't be faced with the worry of how far away it is. (That was a HUGE concern for us. My son has major anxiety issues and can't be away from me for any amount of time.)

I try to talk about BPD every chance I get. I try to reach out and let people know what it is. How it affects my son, myself and our family.  To protect him, and do his story justice, I ALWAYS ask what I can post, and what he wants to keep secret. He almost ALWAYS lets me post his "story" exactly how it happens. He's quite the advocate for a child.

But I find myself holding back. I ask myself why all the time. I'm a very upfront and blunt person. I hold back though because there is such a negative stereotype surrounding mental illness, and I'm afraid people will peg my son as something he's not. After all, first and foremost he's a little boy. A little boy with a lot on his plate, but a little boy none the less.

We've already dealt with bullies. Sometimes on a daily basis because of where we live. We had to pull him from school because they didn't have the patience to be kind to him. We've been in and out of therapies, social skills groups (autism) and so on. Through it all, he keeps on. He wears a smile and he is such a fun loving kid. He has taught me so much! On days where I can't take BPD any more, and I start to cry, I think of how it must feel for him. He has to fight his own mind. I don't. I just have to be there for him. I just have to be his mom.

 Whether or not you know someone afflicted with bipolar, try to educate yourself on it a bit. Teach your children to be kind and accepting of the kids that don't seem quite like them. Teach your children to speak kindly to everyone, no matter how different they seem. 

Also, if you think you or someone you love may be suffering with bipolar disorder, PLEASE speak to your doctor. Do not be afraid. Do not be ashamed. None of us are perfect. We all have a battle to fight, yours is just different than mine.

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!

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.

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.

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

The Autism Life

Sometimes the Autism life is harder on me, than it is him.

When we got home from grocery shopping Liam couldn't wait to get back outside and "find friends." So much so, that he dumped the litter pan, and forgot to bring it in, because he saw "friends" walking by.

He came flying in, vibrating with excitement he yelled, "Momma, J and his cousin J are walking around. Can I go with them?" (they are 11 and 16, so I feel safe when Liam is with them.) I told him yes, and he beamed. He flew into his classroom/toy room, grabbed an old Halloween mask, slapped it on his face, kissed my cheek (twice as always) and flew out the front door.

I smiled to myself. Today seemed to be a good day. Though he was stimmy, talking a mile a minute, and ready to cry at the drop of a hat, the kids were accepting him. That makes it a great day.

Not 5 minutes later, Liam comes back in. Mask in hand, he yells, "Is A here?"  I reply, "No. Why?" He said, "Because J told me A was here for me, and I should come play with him. So I came home!"

I stopped putting away the canned goods and walked into the living room. I could feel my face turning red. My ears were on fire. Apparently J and J didn't want Liam and his silly mask walking with them, so they told him A was here looking for him. To get rid of him.

I said, "Liam, you saw A up the road helping the neighbors, so you knew he wasn't here. Did they not want to walk with you?"

My heart is racing, my anger is rising....

Liam, nonchalantly says, "well, maybe," and goes back to looking at his Magic cards.

I paused for a few moments. I was choking back my tears. Why can't kids accept that he is different? Why can't they accept that different is OKAY.

My voice wavering I say to Liam, "well, when J comes over later to play Magic cards with you, tell him to go play with someone else." (I am tired of my son being jilted, and only good enough when these kids are bored.)

Liam looks at me puzzled and says, "No, Momma!"

I reply, "well, then, what will you say?"

Liam says with a big grin, "I will say, LET'S PLAY J!"

The innocence crushes my heart. I choke on my anger.

You see, I am the one bothered by Liam being turned away. It didn't bother him. He didn't care. He is just happy when a kid seeks him out. That is how kind, and how gentle his heart is.

I AM BLIGHTING MY CHILD!!!!

I am trying to harden his heart to this cruel world, and it's not right.

In an effort to keep him from being hurt, I am intervening with what is right for me, NOT for him. He ISN'T a "typical" kid, and sometimes I lose sight of that.

We all make mistakes. None of us are perfect. We all only want what is best for our kiddos. Sometimes we don't always know what that is. Sometimes, we are wrong.

 <3 <3 <3 <3