Hi my name is …

March 18th marks my 31st year on this Earth. March 18th marks 31 years that I was lost and confused about myself and my life. There were so many unanswered questions, so many misrepresentations of who I was and am. 

Well, almost 31 years that is. March 18th now marks the First year that I have answers and understanding to why things are the way they are. 

What am I talking about you ask? It’s simple really, yet complicated. 

All through my life I felt I didn’t belong or fit in. I mean I could morph myself into a certain group or find ways to blend in and hide in the shadows. But really it was exhausting, and at some point I just gave up on it. When I was 17 years old I was diagnosed with Bipolar disorder, borderline personality disorder, social anxiety, and a few other disorders. They gave me a bunch of medications and I basically walked around like a zombi for the next 8 years. I couldn’t take it anymore. I felt like I was a shell of myself, who ever that was. 

I came off all the meds with the exception of my mood stabilizer for my bipolar disorder as it was the only one that seemed to help. I still couldn’t do social situations, I literally just shut down and couldn’t function. I hadn’t been able to hold a job, I had no friends, my relationships were unsuccessful and needy at best. 

In 2008 my lil man was born. In 2010 he was diagnosed with PDD-NOS, part of the autism spectrum. It was at that time things started making sense to me. After following the words of two other Autism Mamas, Erin (Mutha Lovin’ Autism) and Karen (More than just a diagnosis – our journey), I took my suspicions to my doctor. After that appointment I walked out of his office with a better understanding of myself.

Hi, my name is Erin and I’m an aspie. But I am also a mom, a friend, and a teacher. The diagnosis didn’t change me or really anything else other than explain why the medications didn’t work and why things have always been the way they are. The truth is I am just me and a diagnosis didn’t change that. 

This is me

Imagine a world where nothing matters, you could do anything. You thought you were invincible. Money could be spent without a thought to how the bills would be paid. Imagine a world where you were the best at everything and you needed very little sleep to get things done.  This world sounds kind of nice doesn’t it?

 Well this is mania – it’s my mania to be exact. It also comes with some very dangerous side effects. That money that you spent, you needed it to pay your rent or buy formula for the baby.  The things I think I can do because I’m unstoppable, well they have consequences as well. Those things almost destroyed my marriage more than once.  This phase can last for a few hours to a month or more at a time for me. Then comes the next phase … I crash.

 I fall into a bottomless pit of depression. It’s dark, it’s scary and most of all it is real. I’m not talking about sit around and cry type of depression. Oh that would be a piece of cake compared to what I experience.  When I hit this depression personal care doesn’t matter. If someone didn’t tell me to take a shower or brush my teeth I probably wouldn’t. During this depression I am not a good mom, I do the bare minimum to make sure my children are taken care of. Not because I don’t want to take care of them, but because I can’t.

 The dark world of this depression hurts physically, mentally and emotionally. I’m not good enough for anyone. I can list all of my faults to an exact measurement, even if no one else can see them. It’s during these depressions that I truly believe that the world would be a better place without me. I know how much of a burden I am on my family, and honestly when I am depressed because of my bipolar lows I know in my heart of hearts that my family would be better off without having to constantly worry about me.  

 As scary as those low points sound, they really aren’t the worst of it. It’s when you cycle back up into mania that it becomes dangerous. All of those negative thoughts you have during depression you now have the motivation to do.

My bipolar disorder has had a major impact on my life. It has impacted my family and those around me. It has led my husband to watch me attempt suicide and have to call 911 to have me hospitalized.  My bipolar disorder has led to my mother to question what she did wrong. She has had to sit in a doctor’s office and be told that without medications I would continue this destructive path.

With medications, which need to be adjusted every so often, I can be somewhat stable. Even that isn’t perfect. I still slip into nasty depressions and scary manias. This is my bipolar disorder; this is part of our life for better or worse. 

Thankful for Her

Lil Advocate, Age 2

In September of 2006 I was blessed with my first child. While all children are gifts, this child was something special. My pregnancy with her was rough. I spent most of it on bed rest after going into labor at only 15 weeks into the pregnancy. My cervix had already started to dilate and due to a partial placenta previa my OB could not surgically close my cervix. This meant I had to spend all of my second trimester and part of the third on bed rest.

I do not know how to stop moving or sit still. In order to ensure I stayed on bed rest my husband and mom decided it would be best if I stayed at her house where my younger sister was home during the day finishing her senior year of high school via virtual education.

By the third trimester I was released from bed rest but told to take it easy. My husband and I FINALLY were able to move into our first apartment. I spent the last 10 weeks of my pregnancy getting ready for this little girls arrival. Finally the day came, and I got to meet this beautiful baby girl. The best thing about it was she was MINE! and boy was I scared about that. 

Lil advocate has been a blessing to this family since the day she was placed in my arms. While she may never understand how much she had taught me about life, she will always feel the love I have for her. I am thankful for this amazing child that calls me mom everyday. She has a personality that will light up the room. Our family would not be complete without her. 

I am thankful that with all the challenges our family faces and the amount of attention that her siblings require she still comes out on top of it all. Her determination to succeed in life is one that is awe inspiring. I am thankful that I can be a positive role model for her to learn from. 

I am thankful that my daughter welcomes me into her heart with love and understanding. I am not always happy or perfect, but she knows that at the end of the night I will give her that huge hug and kiss before she goes off to sleep. 

I am so thankful that my daughter knows how great she is and how much she means to me. 

Green Eyed Monster

I’d say we are all friends here. Here is where I share my biggest joys and happiness, it’s also where I share my fears and disappointments. Tonight I am going to do just that … Share.

I have been extremely happy with the progress little girl is making with her language. I’m over the moon and I am not in anyway negating the joy I have for this situation. But I am jealous. I’m jealous of the little girl who just turned two and is speaking in clear three word sentences. I am jealous of the kids in Lil girl’s preschool class that are younger than her. Those that don’t regress in their behaviors, those that clearly speak their wants and needs. I am jealous of those moms who understand their beautiful little child and don’t play guessing games as to what they want.

I am angry at myself for not understanding her all the time. I am angry at myself for not always knowing what my very verbal son wants. I am also jealous of those families that are not worrying about if their child will run off on them and disappear while trick or treating. I am jealous of that family that can go with their child and not have to have one adult per child because two of them may run off and end up in a lake or hit by a car or taken by a stranger. I am angry that I am jealous because my children are progressing and I watch them work hard to get to their best self. I am angry at being self centered when it is the kids who have to battle this battle daily and they are happy.

I am jealous and angry because my oldest needs more attention than I can give her because her brother and sister are always in need of something.

But most of all I am an emotional wreck that just wants what is best for all three of her children. I am an emotional wreck that wishes I was more grateful for the progress and growth and a little less resentful at the hand of cards my life has given me.

I am a human being and I am a mom …

Little Girl

In 2010 I brought home the most beautiful little girl. She had a mind of her own from the start. She was born three weeks early. She was a little yellow, and a little under weight but healthy and all mine. I watched her meet all of her milestones up until she was a year old. Then I watched her milestones slow down. I watched my beautiful little girl lose the few signs she knew, I watched her babbling stop and heard her become silent.  That is a parents biggest fear. 

At 18 months, I saw so many signs in my little girl. She was just like her brother in so many ways. She didn’t enjoy interacting with her siblings. I thought this was because her brother has social skill issues, that if I put her in preschool this would change. So I spent money I didn’t have to ensure that she had social interaction with her peers. I hoped that the signs I was seeing were not leading me down this road once again. 

She started flapping, she started lining up her toys. It looks like it would be normal until you look closer. We joke that little girl makes her lines so pretty,  yet inside I am crying NOT AGAIN! YOU HAVE TO BE FREAKING KIDDING ME! She has amazing eye contact and is social with adults and children older than her … they say those two things disqualify her for an autism diagnosis. This also means we get no services.  She is one point too high in two areas for help.

I have spent hours fighting to get her therapy and even more hours working one on one with her while the older two kids are in school on speech sounds. Around two and a half we got speech sounds. Then unintelligible single words with gesturing. These things didn’t happen over night, but after hours of work.  For every step we took forward, we would take a few steps back as well. 

This past week we have seen a huge development. Spontaneous speech. Thats right, not just echoing, but actually words with intent. We also have had a lot of functional echoing. This makes me hopeful. This reminds me that gains are not accidents but a result of hard work and dedication. Even if lil girl loses her words again, I know they are in there and one day I will hear them again.

 

Words he didn’t say

Many times I tried to understand my son. I cried to hear him speak and then he spoke, but the words still did not bring clarity to me or my family.  After a year and a half of my lil man using words to communicate we have finally started to understand his meanings, not always but most of the time. We know when he says “so and so was bad to me” it means someone hurt his feelings or didn’t give him what he wanted. We know when he says “i no get no food” it means he is hungry. But the world does not know these things. The world does not understand the way he communicates. 

The world just doesn’t understand. 

Even though I do understand there are many things I still do not understand. 

I want to understand!

Today I got my chance to understand. I should have known … but I didn’t. I’m his mom and I did not know. How is it that a mom just did not know what her child was trying to say for so long. 

I missed it …

We were outside today playing, he invaded my bubble. He just wanted a hug but he came into my bubble. I know this sounds horrible, but it’s the truth. At the time I couldn’t have anyone in my bubble. I took a deep breath and gave him a hug. Then I went to tickle him. 

I learned something new today.

He said oww, he pulled away, he walked over to a tree and sat down with his head hidden in his arms.  How did I not know that tickling him hurt. How did I not understand that for his mind and body tickling is painful. 

I feel helpless

I gave him his space, let him regulate and then went to pick him up. He let me wrap my arms around him and make it better. He needed me to understand, he needed to have that moment. Afterwords he told me he doesn’t know why it hurts, but it does. It makes him feel bad when he is tickled. 

I understand …. mommy understands … you are not alone

 

 

What Do you know about ….

Today is world suicide prevention day. This fact was brought to my attention by another Facebook page. The owner of this page, Spinning Cars and Flying Horses Autism Bipolar Adventure, bared her soul for all of Facebook to see. She asked if anyone had a story to share to message the page if you wanted to share your story anonymously.

SUICIDE … 

A taboo subject. No one wants to talk about it, even less want to admit that their life has been changed because of it. Yet it is a problem we must face in our world. Each year we hear more and more accounts of suicide. Many times it is teens we hear about due to bullying. Or murder/suicides. What we don’t hear are personal accounts of those nameless/faceless individuals that have attempted suicide. We don’t hear what brought them to this point, or how they managed to come back from a failed attempt.

 

Here is my story, not something I have shared many times before. I am putting it out there for the world to see, for the world to understand that Suicide is something that needs to be talked about in order to prevent more lives from ending when help can be given.

 

All through out my life I felt different, I didn’t fit in. I did not feel this world was the one I was meant to be in. Even my poetry expressed those thoughts and feelings from the time I was 12. At the age of fourteen I raped. I felt ashamed, dirty and some how responsible for this. I didn’t pick this, but like many rape victims I felt it was my fault that I cause it. I did not speak a word of it to anyone. The few friends I had were lost and things got worse. Fast forward three years, I was 17. I was isolating from the world. I was mean and angry. Then I was happy as could be and nothing could stop me. Those “ups’ were the most dangerous times in my life. My cutting became worse and the jackets and long sleeves were a daily occurrence for me. I had a teacher who saw the signs and refereed me out to the school psychologist, I was labeled … I saw the therapist, I told them what they wanted to hear and then I was caught. On our last session provided by the county I was asked to take of my jacket. I was sent to a psychiatrist where I was diagnosed with bipolar disorder, PTSD, Severe social anxiety, phsycosis, ADHD, and many more things. I couldn’t take it anymore. In April of 2001 I tried to end my life. I took as many pills as I could find in my house and then went to sleep. My sister blamed herself, she had no clue that the pills I had were intended to end my life, she wasn’t to blame. Sadly this would not be my last attempt. I had several more failed attempts … more a cry for help. My final attempt to take my life was nearly successful. In 2003 I lost my mother-in-law to multiple organ failure and my uncle lost his battle to AIDS, my family thought the best way to handle my psychosis was through a religious ceremony (in other words a form of an exorcism). I was done. I was sick of being a burden on everyone’s life. I quickly and quietly took 50 pills of depakote ER at 500 mg each. I did not say a word to anyone. My hubby noticed something was wrong and that I was in a room behind a closed door. He quickly called 911, I was transported to the ER, had my stomach pumped and spent 4 days in the ICU until my blood levels came out of the dangerously toxic levels. I was put on a 72 hour hold once I left the ICU. That day something changed, I checked myself into an intensive residential program and f or the next 30 days I worked the program, I wanted the change. Since that day I have not attempted to take my life. I still battle with this daily. I still cut, sometimes worse than others. I have scars I can not explain and a mind that does not work they way it should. Each day is a battle, but it is one I fight because my family means more to me than anything else. I could not imagine leaving my three beautiful children to have to understand why their mommy left them.

Dear Life

Dear Life,

 

I am writing to tell you to go Fuck yourself. I am sick of the bad news and everything that you have brought to my family in 2013. I am ready to see this year go and ask that you post pone any crappy things you have in store for 2014.

This year life has brought my family the news that my baby sister has cervical cancer. Like I said F you. She is 25, yes I know it was caught early and she is responding to treatment but seriously was that really needed this year? Right after the love of her life destroyed her? We, as a family, have spent the last 10 months picking up the pieces that were shattered. I have held her hair back as she drank herself sick, I have sat on the phone with her for hours telling her she is perfect and he is the one who is in the wrong. This has started to get better, only for life to hit our family again.

Three weeks ago my mom was out-of-town for business. She was in the elevator going up to her apartment and she passed out. No one was around so there was no one to catch her. When she came to she had banged up her nose, her face, knees, and hands. She fell onto the marble floor of the elevator. She did not go to the ER, instead she finished out her work week in Puerto Rico and flew home the following Friday. She finally got into the doctor two weeks after the fall. Her doctor sent her for CT scans of the brain, facial bones, and neck. They were ordered Stat.  I called her Wed to see if she got the results, no answer from my mom. Finally she and I talked yesterday afternoon around 3:30 in the afternoon. I was really confused, my mom works until at least 6 every night.

You see life you decided to kick me as I was just getting back on my feet. My mom told me that they found a growth on her brain. I couldn’t understand what she was saying, it wouldn’t process. Then she said it again, the neurologist told her she had a benign tumor growing. With tears rolling down my face I hit the floor. My knees gave out and somehow I was sitting on the floor when I had just been standing.

 

Here’s the thing life, I know it’s benign I understand that it is not cancer but there is only one way to take out a tumor … it’s called brain surgery. That in itself carries its own risks. So life, you can take 2013 and shove it up your ass. My mom is my best friend, and while we do not always see eye to eye on things and fight … I’ll be damned if you are going to kick me any more.

I’m still working through what you have brought my family this year, and I’m not sure I’m going to be okay until everything is said and done. This includes my dad having to have yet another surgery to replace his pacemaker next month.

While you have kicked me while  I am down, I will not let this take the light out of my day. I will continue to pray and know that everything will be okay in God’s hands.

Back to school

I am excited for back to school … it means I will have three hours every day when the youngest is napping (in my dreams) and the older two will be in school.

My lil man, well he isn’t as excited. Actually he is terrified. He doesn’t want me to leave him, yet I can not stay. So today I took him with me to his orientation. I wasn’t sure if I was going to do this because I knew it would be chaotic and very busy in the school, but he did great! He said Hi to his teacher and it only took three verbal prompts to get him to say it! Progress.  I had a chance to talk with his teacher, even gave her the brochure about lil man, she loved it! She assured me we would have open communication from day one with daily reports. She would keep me up to date through our communication notebook, score for teacher. I also found out that my son was not the first child on the spectrum in her class … score again for mommy!

Following meet and greet we went out to lunch, he did pretty good  considering the noise level. He did however need to use the bathroom 5 times in a span of 40 minutes, I think he is obsessed with bathrooms in general. He does this whenever we go somewhere.  Lunch was not our last stop, of course it’s back to school and there is so much to do before Monday morning comes.

We had to get hair cuts (him and sissy both), new clothes, of course a book to read, some spray in hair color to make his new mohawk look über cool Monday, and finally to wallyword to get school supplies.  For any child this is a busy day, but a child on the spectrum this is insanity.

For the first time every lil man allowed someone other mommy and daddy to cut his hair. He did pretty good with it, only licked me and bite me a few times since he couldn’t get to his shirt to chew on.  We left and on the way out my mom (his Nani) told him at the end of the day if he used his listening ears he could have a toy later. Lil man does not understand the concept of later. He heard toy and that is all that mattered to him. We head in to buy his clothes at the next store and of course they have toys. Lil man fixated on getting a toy. He could care less about new clothes … he didn’t understand why he couldn’t have a toy right then. No amount of later from Nani would fix that. Over stimulated and confused, he curled himself into a ball under a clothing rack and rocked himself. After about five minutes I was able to get him out and get him on track to get his school clothes. He even picked out his very own backpack with Jake and the “LeverLan” pirates. He ended up getting a stuffed dog on the way out.

We got his book, a 3D book on sharks. No surprise there he loves fish of any kind. He still wanted his toy, he didn’t understand later meant on the way home.

Finally after a few more quick stops at various stores we went to the dreaded walmart for school supplies. Lil man was exhausted he sat in the cart. Just the noise of the wheels on the road was setting him off. He sat there covering his ears with a look of pain on his face. God do I wish I could ease this for him. I wanted to take him home, but I had to finish the school supplies. We get through walmart, he is stimming like crazy. Finally in check out he starts to screech and vocal stim, I went to put my finger over his lips and say quiet voice and of course I was bit. Seriously, did I think that this would end differently?!? After almost 5 years of this I should know right? Well no big deal. It’s part of the job. Except the teenage cashier didn’t see it this way. She decided to take it upon herself to tell my kid he was bad for it. WHAT? WHAT THE FUCK DID YOU JUST SAY? okay so I didn’t lose it. It really did take everything in me not to bitch slap this kid who wanted to dole out her unsolicited parenting advice. I simply told her “He’s not bad, he’s doing the best he can” I could care less about educating at that moment, I was worried about my son and his sensory needs. She continued with it, finally mom my (Nani) looked up at her with a look that only 30 years of parenting can perfect, told her “He isn’t bad, he is autistic there is a difference and maybe you should learn it” GO Nani.  I’m secretly doing the happy dance.

 

My kid did awesome today, no major meltdowns and he made it through when I never thought he would. He has come so far. But this is the start of new stresses in our life as he begins school for the first time Monday morning. He is a champ and I know he will do amazing, but as a parent all I want to do is help him and never have to see this look of anxiety and pain that the next few weeks will bring him.

Mirror, Mirror on the wall …

Mirror, Mirror on the wall does this blog really tell it all? Can any blog really tell it all?

It’s my opinion that I try to keep it real and tell it all, but there are things I don’t say. I am not the perfect person or the perfect mom. This blog gives a small insight into my world with autism, adhd, bipolar disorder, and an undiagnosed daughter going though her clinical evaluations.

 

Here is what this blog doesn’t say:

It doesn’t tell you how most days I want to run away and hide.

It doesn’t tell you that I get pissed off when people tell me nothing is wrong with my kid because he looks normal.

It doesn’t tell you that I dread the first day of school because all though my son is verbal he can’t always tell me what is going on in his mind.

This happened at his last preschool, four months later he finally told me they were taking his fidget toy away from him and they were not telling me either.

This blog doesn’t tell you that I lose it with my kids, but immediately feel shame for it.

This blog doesn’t tell you that there are days I hate the struggles this life has brought me.  Those days of hate and anger are eased when I see one of my three children doing some thing that someone with a medical degree told me they wouldn’t do.

 

Does this blog tell it all? No!  But it gives you a view of what our life is like.

http://dailypost.wordpress.com/2013/08/14/daily-prompt-reflections/