The System is Failing Our Children

How is it that the systems put in place to help or protect our children are actually failing them? 

    We live in Pennsylvania. Liam was diagnosed on the spectrum six years ago. (In the years following, many diagnoses would follow.) At that time, our state case worker suggested we file for SSDI. We have filed, been denied, appealed, been denied, on and off for those six years.

    This year when we went into our caseworker to review his benefits we were told to file again. We called the SSI office and asked for paperwork. In the meantime, I get this letter in the mail.

   Okay, so first of all, what in the heck is the DAP and why in God's name have I just now been informed of it? We've been battling the state for Liam's rights for SIX years. All this time the Disability Advocacy Program of Pa never once stepped in. Not once.

    Suddenly, here they are, telling me if I DON'T file for him that I AM IN VIOLATION. What about them? As you can see, they clearly state that "Liam is considered a person with Disabilities." Yet, year after year, case after case, this very state denies him.

    Now let that sink in.

    I would be in violation for not filing, but they aren't for denying? How does that work? So last night, I spent a couple more hours filling out the same forms, and booklets that I have done in the past. All for them to tell me he isn't "disabled enough."

    Okay. Then why can't he attend a traditional school? Why are you, the state of Pa, helping to pay for me to not work, in order to care for, and to school him myself? Why does his school have him in numerous therapies for Speech, OT, and PT. How can you deny the fact that NUMEROUS doctors have diagnosed him with so many conditions, three of which automatically qualify him for SSDI?

    Why is it that systems put in place to help our children, aren't. (Remember, we've been filing for six years, and just NOW we're being told there's an agency that helps with that.) Yet, the only help they have given is to tell me I could be in violation. Gee, thanks Pennsylvania!

    Our children fight so hard to find their place in this world. They fight to over come their obstacles, and to face their challenges. As parents, we help them with these battles. We also try our very best to make sure all of their needs are met. Yet, the systems put in place to help them, don't. Instead they fail them, and us as well.

   

   

We Don’t Walk on Sunshine We Walk on Eggshells

Let me preface this with a disclaimer.

Neither I, nor my son, his father, or any of our family are looking for pity. What we are looking for is to educate the masses that mental illness DOES affect children. It also affects their families.

Tomorrow is the Vernal Equinox. (By the time this posts, it will be passed the VE.) We’re already experiencing longer days. That alone throws many of us for a loop. Especially Autism families. For families like ours, it’s something more.

If you’ve followed us for any amount of time, you know that my son is Autistic. He also lives with Pediatric Bipolar Disorder. I’ve spoken written many times about his major depressive cycles. As a matter of fact, the big one is right around the corner. That’s what Spring brings to our family each year.

However, I don’t believe I’ve ever written about his manic cycles. At least not in depth, nor on this blog. Which brings me to why I’m sitting here writing tonight. At the moment, my son is quietly playing with his action figures. This is the longest I have seen him sit still in days.

If you’re familiar with Autism, you know many Autistics don’t tend to sit still for long. They stim too. My son does both, but when he’s in a Manic cycle, they’re more extreme. I used to tell people that while I loathe Bipolar Disorder, I would take a Manic Cycle over a depressive one any day of the week. That changed this weekend.

Until just yesterday, I have never noticed what an extreme Manic episode was. You see, when my son (and many others) are in (what I thought to be a) manic cycle, they’re uber happy. They tend to talk non-stop, whether it makes sense or not. They ramble on, going from one topic to the next, and rarely stop for air. (I’m not exaggerating.) When you add Autism into the mix, stimming is virtually non-stop as well. My son doesn’t sit still at all when he’s manic (hypomanic.) Sleep is nil. It lasts for a few days or so. Many would look at my son during this time and think of Autism and ADHD.  So as you can see, this would be preferable to watching your loved one so depressed that they can’t function. As I recently learned, this in fact tends to be more of a hypomanic cycle.

Until yesterday I have only ever seen my son in a hypomanic cycle. I had yet to witness full blown mania. Without going into specifics and embarrassing my son, let me explain it in a way that I can still protect his privacy.

My son went from the above “symptoms,” to a grandiose version of them. Then suddenly, he snapped. Something so little, so trivial, sent him over the edge. I’ve seen my son have so many meltdowns, that they really don’t even phase me anymore, but this, this was different. Writing this right now is making me sick, but this, this was terrifying.

I don’t think I’ll ever forget the look in his eyes. His face read rage, fear, and utter lack of any idea of what was happening. Liam’s father wasn’t here. It was just him, my older (step) son, and myself.

This outburst (for lack of a better term) was directed at his brother. I was reprimanding Liam for something, and he saw his brother smile. That was it. That was all it took. He was on him like a feral dog on his first meal in weeks. Before my mind could fully process what was happening, I jumped up and yanked him off his brother, put him on the floor, and applied some of my weight for pressure.

He was screaming, but in just a few moments I saw MY SON come back to me. (You see, THAT wasn’t my son.) His body hitched with tears and I let him up. He ran into the kitchen and hid in a corner.

It took a bit for me to calm him down. I did what I always do after he has a meltdown. I let him tell me what he needs. (Which happened to be some squeezing and singing.) He kept repeating that it wasn’t his fault. That WE are bad and made him angry. That isn’t my boy. My boy always owns up to his actions. He always tells on himself if he does something naughty. But last night…. last night he blamed us. After that, he went straight into self loathing.

He kept repeating that he was “bad,” and “no good.” When he was more calm, I offered him a drink, “I can’t have a drink because I don’t deserve to drink.” My heart was breaking. I kept reassuring him that he wasn’t any of those things. My older son just sat on the couch, completely dumbfounded and shocked at what happened in a split second.

We both talked to him about it. We told Liam that we understand HE wasn’t in control. That he wasn’t in trouble, BUT that he HAD to try his very best to be in control. He went back to being hyper, stimmy, and talking.

A few hours later it happened again. This time because they were having a Nerf war, and his brother hit him with a dart. Within thirty minutes the whole situation was better. My husband came home. The only way he knew something horrible has happened was the looks on mine and our older son’s face. Liam was just playing and being Liam.

When Liam left the room I cried. I bawled and tried to explain what happened to my husband. Snot and tears were flying. I’ve rarely seen a clueless and helpless look on his face, but last night, that’s all he wore. Today we all have walked on eggshells. For fear of another manic outburst, or him delving to the bottom of a depressive cycle.

I know many may read this and think, “you’re the parents, you’re in control, not him!” The truth is, NONE of us are. Right now, Bipolar Disorder is in control.

So, tomorrow morning we’re putting in a crisis call to his doctor. We need to make a plan. We need to find new ways to help our son, because he, and us, do NOT deserve to live like this.

Edited to add: As of today he is doing much better. An appointment has been made with an emergency plan if need be.

Why I Came Out of "Retirement"

    This has been a rough spring and summer here at the House of AuSome. Liam hasn't been able to shake his last depressive cycle for months. It's been one hell of a roller coaster ride, for him, and for us, his family. He's finally starting to cycle to manic. (Of course he is. I ran out of melatonin and am broke until Monday! Special Needs Mom humor there :) )

    Anyway, a few months ago I learned about the Semicolon Project. (Click the name for more info if you haven't heard of it yet.) I LOVED it! The meaning really struck my heart strings. I immediately drew a semicolon on my wrist and shared the photo. It was then that I knew that I needed this permanently.

    (For those that haven't followed us from the beginning, or those with a shoddy memory like me, I used to be a tattoo artist. I gave it up to be a mommy. A mommy to a very special boy, who is my greatest creation ever! So in essence, I'm "retired.")

    Not only is Liam affected by Bipolar Disorder, but so is my Aunt, and my Grammy. So for me, this tattoo was a must have. I asked Pita what he thought. He knows that once my mind is set, it doesn't really matter what he says, but he goes with it. ;) I wanted him to join me though. I thought that we could both get one, in support of our boy. He of course agreed.

    And then I had second thoughts..... You see, I also suffer from Fibromyalgia, so I was worried about being able to tattoo again. I decided that the semicolon was small enough, that I could handle it. If my son can handle all that he does, then I could suck this up!

    So once we had a bit of "extra" money, I ordered some ink and tubes. Thankfully I still had sealed needles. I couldn't wait for the supplies to arrive.  They came in on Monday. As soon as they did, Liam and I got out my tattoo equipment and got started!

    Liam sat and helped me get all set up. He actively engaged in what I was saying, and asked questions along the way. He shook the ink for me. (I think he really just enjoyed the sound of the ball bearing that rattled inside.)

    He asked if it hurt. He asked to see the needles. He then informed me, "Put those away or I may pass out mama!" Then he heard the buzz of the machine and he was enthralled. He held my spray bottle of green soap and sprayed for me, each time I paused the machine.

    In 10 minutes, my semicolon was done. I reminded Liam again what it meant and he beamed. Pita came out for his, and then Liam lost interest. (Hey, I got a good 15 minutes out of him, so I was impressed!)

My semicolon! I love it! Pita's is in the same place, but opposite hand.

    We shared our pics to facebook and by that evening, 2 more people in our extended family reached out to join in. They wanted something a little different though. I got to work drawing it up, and they were in love.

    The next day we went over so I could do their tattoos. We explained to Liam that they too wanted to support him. He just smiled. While I tattooed them, he swam and played under Daddy's watchful eye. I sat, silently wondering, how much of what we told him about the tattoos did he understand?

Liam's Aunts tattoos

    On the way home we had to stop at a store for milk. When Pita came out, he was grinning. "Hey hon! That girl at the register saw my tattoo. She has one too!" Liam piped up, "ANOTHER SUPPORTER FOR ME! YAY MAMA! NOW I NEED ONE!"

    He gets it! He understands. When we got home, he brought me a marker. "Mama, I'm ready for my semicolon, because I want to pause and think,  my life is important!"

    And there you have it folks. From the mouths of babes. <3

Liam's "tattoo" it's faded because he's sweaty!

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!

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.
 

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!"

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.

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)

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

Stifle

Those that follow us on Facebook know that a few months ago Liam was almost hospitalized. Thankfully he wasn't, but it was close.

Afterwards we got him in to see a child psychiatrist whom diagnosed him as Bipolar, ODD, OCD tendencies and Anxiety. All of this on top of Autism, ADHD, and SPD.

This was a very hard time for him, and for us as his parents. I still haven't let myself fully absorb the feelings associated with his depressive episode. I can't. I just can't.

Last night Liam was sitting on my lap, rare for him now that he is getting older. I was thinking about other families I know, who have recently had to hospitalize their autistic children. The flood of memories from Liam's episode became so grandiose I couldn't contain them.

These words were flowing through my mind, so I quickly typed them into my phone so I could remember them today.

Stifle

I stifle the feelings,
The memories, the thoughts.
I think of his courage.
How hard he had fought.

I couldn't give in.
I couldn't shed tears.
He needed my strength
To conquer his fears.

Feeling so helpless, useless, alone.
I shut down my mind.
My heart like a stone.

Still I stifle.
I push away the pain.
I bury the memories;
The heartbreak, the disdain.

I'm afraid to give in.
Afraid to feel.
I fear recurrence.
I fear he won't heal.

Just one little boy.
How much can he take?
How much can he bear?
How long til he breaks?

I stifle my breath.
I mutter a prayer.
I stifle the pain,
Layer by layer.

~Courtney B

My childhood therapist was right. It feels good to get that out. Even if it is in the form of poetry. The release is enlightening.
                                                              <3 <3 <3 <3