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.

Autism...once again you break my heart

As I sat there once again consoling Darian last night, I couldn't help but feel rage.  I hate you autism, you are physically breaking my heart! As I watched Darian sob, knowing she may never ever be able to tell me why she cries, I prayed.  I asked God to please help her, to please take this thing called autism out of her beautiful being. I don't understand why this has happened to her, I want to understand, I want to be strong and say "there's a reason for this", but I cannot find it.  Then I think of all those children who are dying of cancer and are suffering in ways I cannot even imagine.  Those poor parents who know the end is coming and I suddenly feel guilty because Darian isn't dying and I am very grateful for that. 

But I also see her little arm and how horribly disfigured it's becoming because she bites herself so much and I see her lips, how they are so raw because she cannot stop licking them and I can't help but think, what kind of life is this for her?  Why is this happening to her?  Whay can't she be the miracle and suddenly wake up one morning and say to me "good morning mommy, I love you".  Why does she cry? Why?! Is somebody hurting her again and she just can't tell me?  Is she in pain?  What is she trying to tell me? Please God let me know so I can help her.  I cannot stand seeing her so devastated and not know why.  Then I think of my other children, how they must feel when they see me heart broken. It's not fair. 

I hate you autism.  I wish you would stop invading my child's brain and let her go.  You are going to be the death of me. I find myself fighting you, trying not to let you break me.  Then I see my face and I see the exhaustion and how I'm aging at the speed of light and it's you.  All I see when I look in the mirror is autism.  The pain you cause my child and me is unforgivable.  I have no choice but to embrace you and that angers me.  I know you are not going away and I have to deal with you and try to look past you.  But it's hard especially when you cause my child to be beside herself with grief and I know she fights you every minute of every day.  We will continue to fight you and hopefully you will stop and go away.  And I know that will probably never happen and our lives will continue as they are.  We will continue to struggle and have bad moments like tonight, but I will do my best to not let you break us. 

Here I thought this blog would be funnier and I would have a thousand stories of how autism is a walk in the park, how wrong was I?  I will try my best to capture more funny and heart warming moments than bad.  But I have to say, blogging has given me a way to vent the reality of this situation. When I write about my frustration and heart break, I feel better to let it all out.  I can't talk about it with anyone I'm close to out of fear of making them feel horrible for me. Although I know my loved ones will read this and still feel bad, but I don't have to look at their faces when they do. 

Autism, although you have broken my heart once again, you will not defeat us.  We will fight you with everything we have and these moments of plain humanity, will not stop me from bringing you down.  I will embrace you, I will find the good in what you are, I will do everything in my power to look beyond you and I will not let you define who Darian is and will become.  Hopefully you will get tired of our determination and let her go.

This is the true face of #autism...

This is the face of autism...not pretty, not glamorous...unbelievably exhausted! I only wish I could unwrap the joy today. Third night this week my beautiful child decided to get up at 4 a.m. I hope parents with "regular" children appreciate sleep. This is the face of the parent of a child with special needs and boy are we not kidding when we say "special needs"! Having to get up, stay in her room because God forbid she stays quiet and plays by herself, not gonna happen. I can't keep her quiet for the life of me so I have to constantly redirect her to the bed. So it's not like I lay on her bed and try to get some sleep, I have to do what I can for her not to wake everyone else. This is the face of stress and trying to smile through the pain of sleeplessness, working full time, making time for everybody, depressed because I am unable to go to the gym as much as I would like to and last but not least sad, very sad. Don't dare feel sorry for me, just keep this in mind when you meet this face of autism and be kind. We are not parents who look our best all the time, but we are survivors who have been through hell and back. And despite our stressful situation, we have a smile on our face. So when you reject us in the most minimum way, it breaks our heart and our spirit. This is the true face of autism.

Halloween night...

Halloween was great.  Darian did awesome, she was all over it! We both dressed up as Jessie the cowgirl, I felt like an idiot, but she absolutely loved it.  She was so involved in all the activities, walking with Madison and my nephew Leo, going up to doors and saying trick or treat, it was great!  To think, not long ago, we thought this would be an impossible task.  I remember having to carry her all over the neighborhood in order to get her to be involved, it was sad and exhausting for my husband.  He walked around with her on his shoulders most of the time.  It was crazy and very stressful, but we didn't want to ruin Halloween for Madison, so we did what we had to do.  It was so amazing seeing Madison guiding Darian and making sure she got candy, so sweet. I almost wanted to burst into tears! It's been very hard for us as parents to see Madison only not being interested in Darian, but being quite embarrassed by her.  It breaks my heart and I know I can't push it too much, because I don't want to alienate my daughters.  So, what I've been doing is when Darian is screaming and upset and Madison happens to be in the room, covering her ears as usual, I go to her and explain why Darian is doing what she's doing.  It seems to be working.  I've also tried to make her empathize with her.  The other day I told her how Darian's teacher kicked her and pulled her hair and how we didn't know this was happening and she immediately felt horrible and asked a lot of questions.  So she was interested and that's a good sign, I hope.  I've been trying to make her understand how helpless Darian is by not being able to communicate and tell us what's wrong like we do.  I've been asking her to do more things for Darian, like the other night Darian was already in bed and she came out and I asked Madison to take her back to bed.  She did it! I was so happy and Darian was so excited to have Madison be the one who told her to go back to bed.  It was awesome.  But I'm constantly with my heart in my throat because I realize how much Darian needs us and will need us probably for the rest of her life.  I often catch myself getting upset with her when she decides to get up at 3 a.m. wanting to play and complain and I'm exhausted from redirecting her back to her bed and trying my best to get some rest, we end up falling asleep at 5:30 only to get up an hour later! Then it hits me, who in the hell is going to put up with that if mommy and daddy aren't there? Who will have the love and patience to endure her behavior? If I get upset, loving her the way I do, how am I going to expect someone else to understand and be patient with her without wanting to hurt her? I know if I start thinking this way, I'll drive myself crazy, but I can't help it.  So I pray real hard and I ask God to please keep me around for as long as she needs me to be here.

So back to halloween night, so we're in for the night, we still have candy so we keep the light on for those last minute trick or treaters and just before I'm ready to turn off the lights, the door bell rings.  I go to the door and I see this young lady with her mom and she's not giving me any eye contact and she says trick or treat in a very rehearsed kind of way, I recognize it immediately...autism.  So I give her candy and she is very tense and nervous and I see the mom, it's like I'm seeing myself, wanting to hold her hands and pretty much do it for her, but she stands back and watches with those loving, sad eyes and I ask...Autism?  She immediately opens her eyes wide and I say..us too.  She tells me my daughter is 19 and I tell her mine is 8.  It was such a weird, very short conversation, but I can see she immediately felt a sense of "you get it, thank you". She immediately leaves because her daughter, typical, is already half way to the car, she accomplished her task and was ready to go.  She was so beautiful, I thought she was about 15 and was surprised to find out she was 19.  She looked so innocent, almost child like.  And of course I start thinking of Darian's future and wonder how will she be? I hope in a more advanced way, but whatever it may be, she will have me right behind her, ready to step in when needed. 

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.

Welcome to Holland

I have shared this document quite a bit because I believe people truly try to understand what it's like to be in our position, but can't. Sometimes it's just something they don't even want to imagine. But this can give you a clear understanding.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" You say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The sad truth...single parents

I have been reading posts from mother's like me with a child like mine and I realize how fortunate we are to have the support we have.  It breaks my heart reading how unbelievably frustrated these moms are and I completely know what they are feeling.  It's so sad how we are judged for having a child with autism.  The unwelcomed criticism, advice, opinion...it's so frustrating sometimes. And God forbid we complain or get angry at our situation, for some reason it's a big no-no, we'll be labeled as horrible parents.  I just wish you could live one day in our shoes.  The constant planning, the routine of it all, we cannot drop the ball with these kids or you will have an hour meltdown of biting, kicking, sobbing, frustration.  So we do all we can do to avoid this.  We cannot just jump in our car and go for a fun day like a normal family would, we really have to consider the place, the situation, if there's too much noise, if there's a proper bathroom, pack a snack, make sure she understands what's going to happen, it's extremely stressful.  We can't go on a family vacation...ever.  I can't just take her to the grocery store, without making sure she understands she is not getting a new Jessie doll (Toy Story) and I have to be prepared to leave if she starts getting upset because she's not getting what she wants, so no groceries.  I do have to admit we have been very blessed to have a wonderful support system, my mom is wonderful and can handle her, of course she spoils her, which is not good, but for a few hours of freedom, I'll take it!  But other than her, there's really no one who can handle her well enough to understand her needs, she is a very difficult child.  It's a constant guessing game with her and it gets overwhelming at times.  And we all have days of self-pity and I've finally accepted that it's ok to feel this way.  So when I read of other mother's frustrations and how they feel they cannot vent properly, I get it, it's hard because not everyone will understand, but they also won't step up to the plate to help.  Deep down they know they could not handle it. And it's ok.  What people don't understand is, we dig deep down into our soul to bring out the patience and when someone suddenly decides they might know better, we might snap and we don't want to do that.  But it is what it is and sometimes all we want to do is just vent and be human and complain about our unbelievably routine oriented lives.  And all those single women with a child like mine, hats down to you, I would not be able to relax like I do if it weren't for my husband and I am so grateful for him.  So when I read about the heartbreak these women go through, it does break my heart and I will keep them in my prayers because I don't know how I would handle everything I have on my plate without my Mark.  His heart breaks as much as mine does.  So I ask of you, if you know of a single parent with a child with autism, lend a helping hand.  Just offer to be with their child while they nap, go to a movie, go for a walk, or just listen and don't judge...it's not easy.  Our children with special needs bring a lot of joy and a new appreciation for the little things in life, but they also bring exhaustion, unbelievable sadness and frustration.  I know those who know me, think of me as this super mom, and I thank you, but you have to know, it's extremely difficult to live every day being strong and accepting this life God has decided we should have...it's not as easy as we might lead you to believe. It's the sad truth we live with and we are lucky to have each other.  Please say a prayer for all those single parents who need a lot of support without judgement.