It's been so long...

Well it's been a while, I've been so unbelievably busy transitioning to a new project.  Life has been quite challenging these days.  The past few months have been such a roller coaster of emotions...sadness, frustration, doubts.  Darian has been doing well for the most part.  She has been very difficult lately, but more expressive with her needs and emotions.  We tried medication again, but noticed it gave her more anxiety, not to mention her psychiatrist was just mailing it in.  Useless.  She has an appointment with a new Psychiatrist on Thursday, we'll see how he approaches her.  We heard he's very good and has experience with children like her.  So daddy has been on vacation/travel for the past few days, he'll be home Friday.  Weekend was hard.  My 10 year old, Madison, got a gift from my sister-in-law, a goldfish...well I killed it, yes you heard me, I killed the poor thing.  We got her a new fish tank and I accidentally put too much chemicals in the water and killed it.  Ugh! So I go with her to the store and we buy two more fish.  All happy and excited.  Well my darling Darian, having no concept of pet care or anything related to being careful, decides to take the chemicals and dump them all into the fish tank then proceeds to grab the fish and put them on the floor.  She immediately panics and starts sobbing and screaming at the top of her lungs! So in we go, put the fish back in the tank unaware she had dumped all the chemicals in the water.  I finally notice the water was really murky, so I go to the trash can and see the empty bottles.  I immediately take them out and clean the water out and try to save them.  While I'm doing this, Madison is crying and devastated over this, probably hating Darian for doing this, Darian is yelling and completely beside herself.  And I'm breathing trying not to lose it, while saving these poor fish. Unbelievable chaos! So here I am trying to explain to Madison why Darian would do something like this, trying to convince her not to hate her.  While trying to reassure Darian the fish are going to be ok and how she cannot touch them ever again.  So after a couple of hours, they're both calm.  I'm telling Madison they might die and to be prepared.  Promising we'll replace them with the exact same kind of fish.  Late afternoon one of them died as Madison and I watched it take it's last breath...so heartbreaking, the other one survived.  So there we go to flush a second fish down the toilet, all this within 24 hours! Darian of course has no idea what she's done.  I had her apologize to Madison and thankfully Madison somewhat understood.  So devastating for me to see one of my daughters resenting the other.  So heartbreaking.  We put the fish tank in the kitchen, someone is always in our kitchen, this way everyone can keep an eye on Darian. 

You would think that was the end of the drama.  Of course not! Darian ended up cutting her legs as she attempted to shave her legs with Daddy's razor! OMG! I just lost it.  I thought we had put away all the razors, out of her reach.  She found one.  So she sliced herself pretty good.  I didn't have the right size band aids, so my awesome neighbors gave me some. Ended up going to the store to stock up and get bigger ones.  I just can't believe all this is happening. And here I am eating lunch blogging from work.  The more I write, the more aware I am of our sad situation.  I know you think, God doesn't give you more than you can handle, He must think I'm a bad ass!

Then you read about that woman who tried to kill her autistic teenage daughter and herself.  It breaks my heart to think she didn't see any other solution in dealing with her daughter.  What's worse is that I actually understand where she is coming from. It's so unbelievably difficult to deal with a child like ours.  No one will ever understand until you live it.  I'm so sorry for that woman, but I don't care how desperate you are, there's no excuse to end someones life over it.  God help her and that beautiful child.

Well I feel a lot better writing about my fascinating weekend with my beautiful children.  On to the next situation...I'm ready!

It's beginning to look like Christmas...

It's been awhile...not that I don't have anything to write about, but I've been sick, went to visit family and friends in Durango and now I'm sick again.  The holidays snuck up on me.  I'm excited for Darian this Christmas because she kind of understands what's going to happen on Christmas Day.  All she cares about is the new Jessie Doll mommy is getting her for Christmas.  She is so cute.  I have to say even though I love this time of year, the massacre that ocurred on Friday has me so sad.  My heart goes out to those parents who lost their little ones.  I cannot even imagine the pain they are experiencing right now, I will share that pain with them and be grateful for my children.  It just opens my eyes on how much love my kids fill me with.  And I realize that even though Darian is in her own world at times, I am so grateful to have her in my life.  God blessed us with this Angel who has become our teacher in so many ways.  She is the reason our family is so united and so loving.  She has changed my life in so many ways and I hope some day she will understand the impact she has had on me and so many others.  I hope one day I will be able to thank her and have her understand exactly why.  One could only hope.  I know it's sometimes difficult to believe when they say "God has his way of doing things and putting the right people in your life".  I believe this with all my heart.  I know I've had tragedy and heart ache and I've been mistreated and judged in so many ways, but I am grateful to God for putting that pain in my life, it helped me appreciate all that I have and all that I don't have.  He gave us the amazing gift of choice.  We are put in difficult positions all the time and we have the choice of doing what's right.  I met an amazing couple this past weekend and although my baby has Autism and is very challenging, they have had just as many challenges like I have with children developing normally. And I came to the realization, it doesn't matter if your child is disabled or not, many parents go through different heart break and challenges just like I do.  And to be honest, my challenges aren't that bad compared to others.  I am happy, although with a nasty cold, but happy to be a mom and be able to see my children grow up into these beautiful human beings.  I pray God sends comfort to all the parents who have lost their babies and are grieving in a time of giving and happiness.  My heart is with all of them.  Christmas morning I will pray and think of them and I will cherish my children in their honor.  God bless.

Communication...so underrated

I often think of how we all have difficulty communicating our needs, either out of fear or we play games with others. Women are the number one offenders, we always want others, especially our spouse, to automatically know why we are upset or what we want. It really doesn't work that way, we cannot expect others to know what we're thinking, let alone feeling, it will never happen.  We have the great capability of communicating our needs and we choose not to.  It's sad to come to this realization knowing Darian struggles so much in communicating her wants and needs. I can read Darian's mind, most of the time. I am usually one step ahead of her thinking process and I learned this without verbal communication. It's great when it works out and I know exactly what she wants, but it's horrible, when she sits there and sobs and looks at me with her beautiful eyes wanting me to guess what's happening to her. I can't! It's so heart breaking because I can imagine a thousand things that might be wrong and then I go to a very dark place where no parent wants to go and think the worst. Then I have to snap out of it and think that she just wants to cry. Who knows?! I ask every question possible, are you hurt? Are you hungry? Do you need to go peepee? What??? What is making her so sad, so frustrated and angry? As much as I want to believe I am patient, when she gets in this mood, I can't help but cry with her. It's so painful to realize she truly cannot communicate her feelings to me, I know she wants to, but that is the biggest mystery with Autism. She just isn't capable, she has the vocabulary, but she struggles with formulating words into a sentence. It's so frustrating! I know it must be exhausting for her, but as her mother, it's unbelievably discouraging and tiring. Then she has her good days, which are more often than not, she is pure joy. Those are the moments I cherish and hold close to my heart and soul. We took her to Madison's soccer game on Saturday, it was interesting to say the least. Mark and Madison left early, so I got her ready, she was excited and grabbed her Jessie and Bullseye (of course). We get there and as we walk onto the park looking for Madison, she decides to stop on her tracks, hug me and scream at the top of her lungs. Everyone around us pretty much stopped what they were doing and turned to look at us. It was truly hilarious, she screamed so loud it was startling. It could have been a total awkward moment, but I couldn't help it and just laughed. Who knows what she was thinking or wanted to convey to me, we stood there for a minute as she buried her head leaning into me sucking her thumb. I prompted her to keep walking and I could tell she was overwhelmed by all the kids running around and people everywhere, but I told myself, I will not leave, she will deal with this. As we were walking I kept talking to her, explaining what was happening around her. Once we go to where daddy was, she sat in his lawn chair and was happy for the most part. She did try a few times to go onto the field and we dealt with a mini tantrums, but she got with the program and she had a great time. It's so weird how having a child with Autism has changed my outlook on life. How I try my best not to stress over her behavior, because we never know what to expect with her. The weird looks, the awkward body language of others, it doesn't bother me at all. But I have no problem educating others on why she acts the way she does. My daughter's happiness is my happiness. I know that if the world were perfect, Darian would be able to communicate her basic needs and be "normal", but the thing is, this is our world and we do what we have to do to make it work for us. Darian has come a long way and I know we have a long road ahead of us, but we're happy, even if some days are horribly sad, we are overall happy and love one another. I hope one day I will be able to fully understand Autism, if it's frustrating for me, I can't imagine how frustrating it is for Darian. I hope people start communicating more with each other and be grateful to have this capability because God knows my child wishes she could.

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).