Decision makers...outrageous

My heart is a little bit crushed this morning, a very good friend of mine has just lost custody of her boys (foster) :(...the oldest boy has autism with mental retardation...and as a mother with a child with severe autism, I can't understand why this happened to her.  She stepped up to the plate when no one else did to take these children into her home and adopt them, knowing she would probably struggle because of the boy's disability. She didn't care, she took him and has provided for his special needs for two years now.  He has a tendency to drop himself onto the floor when he doesn't want to do something, at times hurting himself.  This is the norm for children like him, they tend to hurt themselves, not on purpose, it's a consequence of their actions.  My baby Darian bites her left forearm when she gets upset, excited, doesn't matter, it doesn't bother her.  But it's something we are working on.  I have to say though, we prefer the biting of the arm, she used scratch her face bloody before the arm and believe me that was a horror for us to see!  But anyone who would see this, would probably think we were abusing her.  Thank God her teachers/therapist are well aware of this or we might be in trouble, like my dear friend.  I guess she should have sent a note to the school saying, my son has a bruise on his cheek because he refused to do therapy on the treadmill (to help with his walking) and as the treadmill was on he decided to let go and ate it!  But never would she have thought his teacher would not ask her what happened. Instead, he asked him and he wanting to go back to his great grandmother (who did not provide him with the structure he needed and let him watch tv all day eating junk) told his teacher his mom did it.  So immediately, by law, the teacher calls CPS and reports it, and in less than week, they remove the children from her home without even investigating properly!  I semi understand, but at the same time, 2 years, 2 whole years of these children receiving stability (services, counseling, etc.) in a loving home with moms who adore them, despite their traumatized short lives, and they take them away to separate them and put them in foster care.  My heart breaks for this family because this young child doesn't know any better and now all of them are going to pay for it.  They took the word of a young boy with autism and mental retardation who has a history of making up stories because he doesn't like therapy, structure and being held accountable for his actions, over a loving couple who has gone far and beyond to give them a good life.  It's the saddest situation, it's truly heart breaking.  Please say a prayer for them.  You can't even blame the child, he doesn't know any better.  I look at Darian and the things she has done to hurt herself because of the tremendous frustration she has to deal with because she can't communicate her needs.  When she has a horrible melt down, she tends to hit her thighs, she at times has slapped herself! I know, it's horrible! Of course we intervene and prevent her from doing this, but it's a terrifying thing to witness as a parent.  But it is what it is and I make sure to videotape it because of situations like this, when we as parents are immediately judged and one simple phone call from the wrong person can destroy her life and ours.  And what is even more outrageous is how Darian's teacher/abuser was reported to CPS and we still haven't heard from them, we couldn't get a call back, a report from them, nothing.  This means either they didn't give a crap or the school lied to us about reporting it.  I am going to investigate this and take all this information to a lawyer and see what I can do about it.  This teacher had no consequence, she is still teaching in the same classroom.  Our system is definitely broken and I am getting sick and tired of this.  These decision makers need to have consequences for their actions.  This is so outrageous!  I hope by me writing about this, will make parents aware of where they stand.  God help us. 

Picture below of Darian's arm (poor baby).

Favorite child?...I don't think so...

I was reading an article where a dad got criticism for admitting he has a favorite child.  I can't necessarily disagree with him, but I wouldn't say "favorite"...I do believe in different kind of relationship with each and everyone of our children.  I love my 3 girls to death! They are my everything, but I have to say, each one of them love me differently and I them.  Darian loves me without a filter...you know? The kind of love that is so transparent.  Madison loves me in her own special way, the kind of love where she knows how to get things from me with affection...little turd! hahaha And Jessica loves me in that mature, growing up phase, where she is a woman and sees me as her mom, but on a whole other level.  There's more respect and appreciation towards me, which I love!  And I love them all with my entire being, the one thing I do have to admit is that Darian has more of my attention, because she requires it.  The bond I have with her, I really don't have with my other girls.  It's just different.  Darian responds to me in a way that gets into my soul.  When she looks at me, it's like she mesmerizes me and I think it's because she is such a mystery.  Always trying to guess what she must be thinking, what she would like to say and she just can't.  My relationship with her is completely different, but doesn't mean favorite, it's just more intense...that's all... This mysterious human being God has sent me, has taught me so much...and she has no idea of the impact she has had on everyone who loves her...it's amazing.  She is so brave, so free of malice, so unbelievably special...it's hard to explain with words.  But I can tell you, she will touch you and get into your soul with just one quiet look...

Story of Luke...

I am so excited and looking forward in seeing The Story of Luke https://www.youtube.com/embed/zm7qif_naDg.  It will be interesting to see this movie and also have the open forum to talk to the director after the showing.  I was thinking about it all weekend as I watched Darian do her thing.  I had a nice time observing her and wondering what will become of her.  It's a scary thought and sometimes I almost have a panic attack thinking about her, but I can't let it get to me.  It is what it is and if she ends up with mommy and daddy for the rest of our lives, so be it.  I'm ready.  She is the most interesting human being I have ever met, I know she came out of my body, but seeing her in action and wondering what goes through that beautiful head of hers, blows me away! Everything she's been through, thank God, she has no memory of it.  I can't imagine what she felt when she was being hit by her teacher, the person she probably thought she could trust...I better stop!!! That part of her life is so completely outrageous, I can't go there right now.  It drives me insane with anger! Can't go there, not today...Looking forward to The Story of Luke, should be great!

After the storm...

Last night was a much more relaxing night.  Darian was in a great mood, she fought me a little on her bath, but once she was there, she enjoyed it.  Sometimes I wonder what goes through that beautiful mind of hers.  She is so adorable and to think she can become such a handfull to say the least.  She was exhausted by the time she went to bed, she was looking at me and I prayed my heart out to please give her serenity to be able to go to sleep and let me sleep! How pathetic, I know, but it's so hard to be tired and super stressed out wanting a peaceful night.  My prayers were answered!  She looked at me and I swear I could see it in her eyes saying "ok Mommy, I'll give you a break...you deserve it" LOL.  I was so thankful and I attempted to give her a kiss, which was denied, instead I got to kiss the top of her head, hahaha. She flopped over sucking her thumb and I knew, success!!!  I'm so happy Mark is coming home tonight, I really need him to be home with us.  I was thinking last night that maybe, just maybe, having daddy away might throw her off.  And why shouldn't it? right? I mean she's a child that lives by routine and structure and maybe having him gone throws her off.  Because if you think about it, she doesn't understand the concept "daddy will be gone for two weeks", she just doesn't know, for all I know in her mind she thinks he's just gone and that's, that.  Wow, just writing this makes me realize how unbelievably sad how unaware she is of certain situations.  I know she misses me when I'm gone, but it hits her only when she sees me and probably asks herself, "hey, where have you been?".  Sometimes she sees me when I've been gone and whimpers, it breaks my heart, but believe me, when I leave to go visit my family and friends in Durango, it does wonders for me.  It's a break I welcome with all my heart.  I had no idea how much it has helped me writing about Darian and everything that happens.  It's so freeing to express myself in this way.  I hope this will help others understand what families go through living with Autism.  It's difficult, but at the same time very eye opening.  Darian has helped us appreciate what we have and how to let go of the stupid things in life.  It puts everything on a different perspective.  Every new word, new realization in Darian's life is such a huge celebration.  We tend to neglect the little things in life because it's expected, but in reality, it's a huge deal.  Every little thing your child does should be celebrated and appreciated.  Everybody should practice patience and kindness, we are all too quick to judge, put down, be mean and be very frustrated over things that we cannot control.  I tell you, learn to let it go.  When you live with someone like Darian you don't have a choice but to be patient and understanding, she is such a mystery and we can't control how she thinks, we can only help her to learn how to handle her own demons.  We may never know what they may be, but we sure as hell will help her push them away and make her realize she has all the support she needs from people who love her dearly.  So after the storm...came the calm...thank you God for listening to me...as always

God...it's exhausting...

Last night, for the first time in a very long time, I asked God why? Why does Darian have to live in her own personal hell?  Why did this happen to her? Why does my baby cry with such sadness and a lot of time anger and not be able to explain to me what's happening? WHY? WHY? WHY? It's truly aging me at a very rapid rate, I can feel my strength just leaving my body, my mind.  It's so exhausting and I know you parents out there who have a child like mine know exactly what I'm talking about.  I can't help but think about my future, her future, her progress, what are we going to do? What else can we do? We've done everything right, we have gone far and beyond to get her the help she needs, we have fought the fight with all our might and still, she has been wronged.  Imagine living with that on your shoulders.  It's exhausting! Then you have your other children who deserve your attention as much as Darian does and it's heart breaking.  I went to Madison's school for a parent-teacher conference and she regressed over the summer on her reading skills, although she's catching up, I am concerned with her speech and language services.  I cannot drop the ball on her progress.  This is crazy.  I never thought in a million years this would be my life and I have to believe it's with a purpose.  I know I've been trying to help other parents like me, other children like Darian, but it's very difficult.  These damn bumps in the road, people who have no clue what it's like to live like we do, who are so quick to deny a service because they think they know what your child's needs are.  It's so exhausting.  If I had a word to describe parents with children with a disability it wouldn't be saints, angels, good...it would definitely be EXHAUSTED.  You can definitely lose your mind.  Imagine sitting on your child's bed waiting for them to be ok with you leaving them for them to go to sleep, you of course would imagine this sweet smile, the peaceful look, the tired look and you kissing them good night and turning their light off and walking out.  Not me, imagine this, your child screaming at you, kicking you, biting themselves, crying with no end in sight and not knowing why.  You know they're tired, you know they've been fed, you know they should be very sleepy by now, but no, not our child, she cries like this for about an hour, while your other child is trying to patiently wait for you and what's worst is that you know in your heart your other child is growing to resent your needy child.  It's unbelievably sad to think it, but it's true.  So finally, you get to a point you calm her down, not with kisses because she will push you away (ouch), but with you maintaining your calm, even as the tears just come down your face and she sees this and looks at me confused and almost wants to laugh because she truly does not understand the concept of you having your heart broken over her disability and inability to communicate with you.  Finally she dismisses me by sayin "Mommy, go sleep too" and that was that.  All that drama and I still don't know why?  So I found myself asking God...why? I dare ask.  I just feel so helpless at times and although I have faith in God and in myself, it's the most difficult thing I've had to deal with in my life time.  I am a very strong person and you can throw anything at me and I will handle it.  But this is beyond anyone's capacity, it's incredibly difficult.  So I ask you my readers, my family, my friends, every time you see a parent struggling with their child, don't feel sorry for them, but please put yourself in their shoes and be kind to them.  And bless them and their huge hearts because it's truly exhausting.  So God, if you are listening, please, you don't have to tell me why, just give me more strength to deal with this and give me the peace I need within to be able to give peace to my children...God...it's exhausting...

Ahhh...work...thank you :)

I know this might sound mean, but I am so glad Ms. Darian was healthy enough to go to school today. Whew!!! What a weekend! Stayed home Thursday and Friday with her, handful to say the least and the weekend was ok, we had to stay inside, it was soooo hot! I have to say, Darian is a trooper, she truly is. Friday and Saturday were the worst for her, but she kept trying her best to be in a good mood.  I think it was harder on me.  Mother's, disabled or not disable, our children are our life and seeing them sick is the worst thing that can happen to us.  I find myself wanting to get sick for her, but at the same time, she was fine.  Doesn't complain much, just wants attention like anyone else, the only thing with my baby is that she cannot tell me what's hurting or bothering her.  So it's a CONSTANT guessing game.  It's so frustrating and unbelievably draining!  Then I had a meeting with these unbelievably wonderful parents on Saturday.  We talked in lenght on how the law works in their child's favor and how NO ONE told them anything. Shocking? Not really. I'm so used to the same story.  I would love to have a workshop for parents who are receiving ABA therapy from Regional Center and prepare them for what's ahead.  Once your child turns 3 years old they are going to be transferred to the school district and guess what? They don't continue the therapy your child has been progressing with. How sad.  I wonder how many parents would rally with me to get the districts to realize the injustice of them not realizing that Autism is almost an epidemic and they need to do what's right? What's even more unbelievable is that ABA therapy works for every child, autism or not.  Although, children with Autism are on a spectrum and all of them have different levels of need, but if you have the right set up and the right people trained, it does wonders for everyone of them.  But no, they refuse, and not only do they refuse, they are arrogant about it. I have to say, not all districts, but Chula Vista District, absolutely.  Enough rant.  I will chip away at them with every family that comes to me for an education, I will make them realize that more and more parents are outraged.  It's not just me.  These beautiful children need this therapy to be able to have a chance of functioning in society one day.  It's absolutely necessary and the law agrees.  Back to my real job, the one that pays the bills! HAHAHA...

The reality of the situation

At home again with a sick Darian, of course she is so happy just being here and knowing I'm with her, that this cold doesn't even phase her.  She disposes of her flems like a truck driver!! Hahaha.  She is so funny. I'm going through my email, getting some work done.  I thought I'd take a break and review one of my client's paperwork, my client by the way is a beautiful 8 year old girl with autism, she looks so much like Darian it's kind of eerie.  I remembered her first progress report is next Friday and as I read through her goals, which are a joke, I started feeling this frustration building inside me, the outrage I feel every time I see cases like this.  How the school system has failed our disabled children and how the teachers take it so personal and get offended because we point out things that just don't make sense, they are completely off base!  Those feelings come back from 2007 when we were told that the ABA therapy she was receiving from the state was not going to be transitioned into the public school system. "What do you mean?" I asked the school district representative sitting at my kitchen table. "Well, we use other methods that work just as well", "Really I asked?", "Oh yes" she says.  Very condescending woman by the way.  I didn't argue and I let her say her say and asked questions that made her very uncomfortable.  At that moment I thought to myself "get ready Annabelle, this is going to get ugly". It sure did get ugly, very ugly.  I remember that first IEP meeting. I had done all the research on IEPs, I educated myself on the process and the law behind it, so they were not ready for me.  And I remember it like it was just yesterday trying to get clarification on one thing from the speech therapist, and it went something like this: "Let me see if I'm understanding you correctly, so what you're saying is, you want to try the PECs method (just pictures no verbal cues) and see IF it works, when I have documentation proving that ABA therapy has helped her progress tremendously? A system that involves pictures vs verbal interaction? If this is what your telling us? Then I have to say, it would be criminal of us as her parents to accept what you are offering our daughter".  Poor thing, her face was so red, she was so irritated by this and of course took it completely personal.  She couldn't say anything, someone else had to jump in and try to rectify the situation, which did nothing for us. At that moment I knew we had to be prepared for the fight. It was a pretty good fight, which we won and got her ABA within the district, 2 years later she got physically abused...unbelievable, but so real.  And today for some odd reason it hit me like a ton of bricks, my baby got her ass kicked by her own teacher! I cannot believe it. I know it happened, I never really grieved over it, and I think it's because I had no other choice but to keep my head straight and focus on Darian moving on from her tragedy.  I just don't think I have moved on from it, how can I? When I see these other parents coming to me for help and I see the desperation in their eyes and the sadness that goes along with everything that comes with having a disabled child.  That righteousness inside of me just bursts out of my body like a freakin rocket! And today I came across this: "Let the evildoer still do evil, and the filthy still be filthy, and righteous still do right...". And I realized I'm just as afraid of confrontation as anybody else and as scary as that is, my righteousness will not let me back down from what is right and fair.  So I tell you parents out there, you are not alone, the fear, the sadness, the outrage, the anger...we all have it and as long as we know in our heart what the RIGHT THING IS, we shall never back down, no matter how hard and exhausting it may be.  Because the reality of the situation is, you and I are the only people on this earth that our children have to really count on.  Never, ever forget that and never, ever feel that you are alone.  I am here and I will be here to help anyone who needs it. I promise.

It kills me!

Today I had to stay home with Darian, she has a nasty cold and giving her medication and trying to get that spray up her nose...what a joy! Hahaha.  Hopefully she'll feel better soon.  I was able to work, that's a plus! I got a phone call from a concerned parent regarding his 5 year old's progress in school, which is not good, good old Chula Vista District strikes again! It's unbelievable the nerve of this district to think parents are just plain stupid.  It just kills me that this goes on within my neighborhood.  Here is Madison, who has an IEP, but is not severe, on the contrary, she's receiving speech therapy and she's catching up.  Not only that, she was selected to participate in the GATE program, which is wonderful.  I believe there aren't any issues because she is not severe and she's easy to talk to.  Then you go to the other extreme with Darian who has severe Autism and they just could not handle her for the life of them! Unbelievable! Not only did they not handle her properly, but she got her ass kicked in the process.  Now I'm getting these calls from parents just like us bringing up the same exact issues from 5 years ago with my own daughter.  It's so sad this District cannot get with the program.  Honestly, it's not that hard, but they refuse to do the right thing, knowing what the right thing is, which is Applied Behavior Analysis.  Every other district does this, not this one, they are too arrogant to be proactive in any way shape or form.  I will tell you this, anyone reading this from Chula Vista, DO NOT allow your special needs child to attend VETERANS School, the Principal, OLGA WEST, is the most uncaring and arrogant individual I have ever met.  And TRACY CLIFTON, the monster who hurt our child is back in the same classroom, teaching children who cannot speak, let alone defend themselves against this horrible, horrible woman! Unbelievable! I am so outraged at this district and I am so close to exposing them for the injustice of the situation, for not accepting responsibility for their actions and not only that, for not caring if a special ed child progresses or not, a total glorified daycare center, that's what this district offers children with Autism.  I have a letter signed by the superintendent detailing what this horrible person did to Darian, she even had the nerve to say she was defending herself when she kicked my baby is the stomach as she lay on the floor having a meltdown! SHE WAS 5!!!! Now the District wants us to consider returning Darian to the public system, NEVER GOING TO HAPPEN. They had their opportunity to do right by our child and they chose not to.  We refrained from suing them thinking they would do the right thing and fire this teacher, but no, they put her right back in exposing these innocent lives to this horrible monster!  I will do right by my child and by every other child to keep them safe and make sure districts give them the right placement.  I will do this until the day I die and God help anyone who gets in my way.  I will expose this woman, in time, I will do it because she does not belong in a room with special needs children or any other children for that matter.  UUUGGGHHHHH...ok, I need to stop now...go to my happy place, go to my happy place...there...gotta tend to my baby...until next time...

Exhaustion...overrated

Well what a day! I've been up since 4 this morning and I can't believe I'm still standing. Another typical day in the life of Darian. My beautiful Angel is in the process of taking pictures of herself on my phone, ready to (hopefully) go to bed peacefully and ready to sleep.  I know I'm more than ready! Another National Anthem day! Hahaha. It's amazing, but she did it, pooped on the potty for the 6th time. She cried and fought it and had me sing the National Anthem to her 3 times...and she did it.  So brave my little one, still traumatized by the act of "pooping". If I could only read her mind! What is it that she thinks is so terrifying? She hates it. Here's hoping one of these days she just goes without a fight.  Had to climb on top of her today to cut those damn toe nails! Thank God my mom is here to help me in holding her so she won't beat the crap out of me.  She is one strong little girl! Mission accomplished with screams and all.  She sure makes me sweat! As I'm looking at her, I wonder if this is it.  If she will always be in her own world half of the time.  With her internal struggles of what she thinks is wrong or right.  Will she ever know how much I love her, how much I will fight for her, how much she means to her family. I know now she misses me when I'm not around and it feels pretty great.  I hope she knows, she will never be alone.  We will try to give her a good life, a peaceful one, that is if she let's us. I cannot imagine my world without her and I want to be able to be there for her as long as I live..then again, Mark and I pretty much have to live FOREVER! It was a tough day, the easiest part of my day was work, but then again I love my job, it's my home away from home...for the most part.  My bubble burst when I got a call from Madison's school, she was in the nurse's  office, throwing up! So there I go driving like a mad woman to get to her so I could comfort her, my poor baby. I got to see Jessica today in between jobs, I miss her so much.  She's such a good sister, always worried about her sisters, she felt horrible for Madison, called me later from work to check up on her, so sweet.  Ok, so what does this mean...Darian is watching a video of one of her major meltdowns, laughing her butt off! Really? Great! LOL...well I better set her timer, time for bed, wish me luck! Good night :)

Sleepless in Chula...LOL

This morning Darian decided 4 o'clock was a fine time to wake up. As I slept in my bed, I could hear her in between dreams and looked at the clock and thought...great! I tried to ignore her, thinking I could just sleep for one more hour without her escaping her room and into mine and waking up Madison (Daddy's not home). Then I asked myself, why Annabelle, why in the hell did you not go to sleep at 10 last night when you had your chance?! Stupid, stupid, stupid! Hahaha. Had to watch Everybody Loves Raymond, I couldn't resist. It was the episode where Robert was getting married and his mom decided she had something to say and he and Amy are in shock. Too funny, then Raymond saves the day by giving a funny best man's speech.  He talked about editing...editing the bad things in your life and hold on to the good ones. And I thought, not a bad idea, but then again with a child like mine, you don't have time to edit, you just can't.  I finally get up and go in her room, which makes her very happy, and I tell her it's early and she has to go back to sleep.  She tells me "mommy with me" "make room", so she moves aside so I can lay down with her. I turn off her light and we lay there with her little feet against my legs swaying them back and forth, I feel her breathing, very relaxing as she sucks her thumb and presses her little face against my back, with a little bit of moaning in between. And I go back to editing, but it's impossible for me to edit the "bad" I see it in my face every morning with my tired eyes, when I smile and my smile looks like a vampire's smile because she broke my left tooth (next to the fang) with a head butt when she was younger, or my crooked right index finger that she has bent a thousand times. How the hell do you edit that? And I know what you're thinking, hmmm, next time I see Annabelle I will not be able to resist and look at her vampire smile! Hahaha. But I don't care, this is my life, it is what it is and I appreciate the bad with the good, it has made me who I am.  I am not mean, I still continue to help others wholehearted, this has not broken me down.  So editing will not be part of me, my mommy battle scars are very present in everything I do and I'm ok with it. Not a problem, bring it on.  There is nothing I cannot handle, there is nothing Darian can't handle, there is nothing my family can't handle.  We have each other and that's good enough for me, so no editing, at least not yet. Gotta say if I could edit anything is having a 25 year old body vs my 41 year old one! LOL! Until next time...buh bye.

My thoughts in a nutshell...not really :)

As I sit here waiting for it to be 8:30 to let our respite go home, I don't know quite how to begin my story, actually Darian's story.  I don't know how to blog, I signed up in 2009 and just can't start.  I share so many stories with my friends, especially those who know and appreciate the laughter behind the madness.  And I know they at times probably feel sorry for me, but they also know who I am and how Autism will not break my spirit or my family's for that matter. I have immense love for my daughters and deep, deep love for my wonderful husband.  But I have to say, I have finally felt unconditional love with Darian, thanks to her autism.  I know it's so crazy to say or even admit without feeling like you are offending your loved ones, but it's the absolute truth.  Darian brought a whole new meaning of love into my life, which made me appreciate my other daughters even more, not to mention my husband.  I walk around with a knot in my throat wanting to shout out to whomever can hear me that I cannot imagine my life without Darian and her noises, her outbursts, her embarrassing situations at the grocery store, at home when she refuses to put pants on when people come over because she loves running around in her underwear without a care in the world, when she gets angry and frustrated with me because I don't understand what she wants or when she sobs with such sadness that I wish I could read her mind and find out why she feels so, so sad; her weird obsessions with her Jessie dolls, her iPad creations following us around and recording us only to blow us up with "Action Movie", when she poops on the potty only when I sing the National Anthem to her, or when she takes a thousand pictures of herself on my iphone before bed every single night, but what I love the most is when she sees me come in through the front door and comes running out of her room just to point at me with her beautiful smile and say "Mommy's home!". It's crazy, I know and sometimes she drives me absolutely insane, but I love it, I love everything about her and her autistic ways. There is never a dull moment in this house with her, but we are so used to her loudness and her frustration, it's a way of life for us.  I do feel sad for my other girls, I know some how, some way I have neglected them and prioritized Darian over them and it kills me, but I also know they completely understand...it's either that or they're just grateful that I'm the only one who can calm Darian down fast enough, where everyone breathes a sigh of relief when she shuts up! hahaha...I want to start documenting her life in our world, I think it's important I do this for me and for anyone who wants to read this.  I want to share her world with yours. At times it will be sad and you will feel sad for us, but don't, my stories will be accompanied by humor most of the time and I hope one day Darian will be able to read my blogs and actually understand the actual meaning of my words...I love you my sweet girl...