Friday, November 9, 2012

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.

Saturday, November 3, 2012

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.

Friday, November 2, 2012

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 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.