Thursday, October 25, 2012 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.

Monday, October 15, 2012

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,'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'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'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.

Monday, October 8, 2012

Meltdowns...what a conundrum...

So this morning my beautiful child decided to have a meltdown, oh what a joy! I woke up early enough and went to the bathroom and I could hear her making her "I'm bothered" noises. I get out as fast as I can, of course I had to brush my teeth first because I cannot stand it if I don't.  Luckily daddy was already with her.  She decided to go "poo poo" in her diaper! All that work put into getting her to go on the potty...uuuggghhhh!  I know, too much information, but this is our life.  So we get her all cleaned up, no biggie, so used to it right? Then I proceed to tell her we need to get ready for school.  Big mistake! She had a full on meltdown. You would think it was about the diaper, not even close.  It was because I stupidly forgot to prepare her yesterday for today.  I usually tell her on Sundays, it's the last day of the weekend and she's going to school on Monday and she's ok with that, but I completely forgot.  So this was a huge disappointment for her.  This is how her mind works, all about preparation and routine.  I felt horrible for failing her.  Luckily I was able to calm her down quickly and she was ok with getting on the bus.  So that was our morning :).  What a way to start the week!  But it is what it is and we deal with it.  It's very, very hard, she needs us so much and it's heart breaking, but we have no choice but to be strong and calm as much as possible.  I can totally see how someone who might see her having a meltdown, would immediately think "what a brat" and I would just love to invite them over to our place for a couple of days and give them a taste of reality.  It's sad and frustrating to see her lose control of her emotions.  Her poor arm takes a beating.  I do have to say, it's a lot less these days.  And it's weird to say this, but I rather her bite her arm than scratch herself bloody.  She used to scratch her neck, it was horrible.  I would have to make sure her nails were cut very short so she wouldn't hurt herself so much.  Wow, as I'm typing I'm realizing how much she has gone through in her lifetime, which is only 8.  I know you might think, poor you as parents, but I would trade places with her in a second if that meant for her to feel normal and able to communicate.  But it is what it is and we accept it with our hearts on our sleeves and ready for the next challenge. I know our challenges have only begun and I am mentally prepared for what's coming.  I just pray God gives me the strength to endure. I've added a video just to show you a little glimpse of Darian's meltdowns.  It's not meant for judgement or pity, I just want to share her struggle with you and educate. I apologize if anyone finds this clip offensive...this is my baby's struggle with communication.

Monday, October 1, 2012

The Story of

We went to see The Story of Luke at the San Diego Film Festival on Saturday.  It was wonderfully written and the acting was amazing.  Lou Taylor Pucci was excellent, he played all the autism traits to perfection.  The swaying, little eye contact, the structured life, using his watch timer to remind him of important things (to him of course), the discipline, his thinking process, the almost child like was so heart warming and touching.  I will never forget it and I'm hoping it gets released in theatres soon. This would be such a great education for all.  Alonso Mayo (@alonsomayo) is to be admired.  He wrote this from personal experience and although Luke is a fictional character, he captured a little bit of everyone he has met with Autism and he did a stupendous job at doing it.  I am so happy this movie exists, it's something I always hoped would be done.  I remember my husband Mark telling me I should write about Darian and make it a sitcom (hahaha) I doubt any network would want to do something like that. Of course he sees all the humor in what we have dealt with, but a lot of families are not there yet.  It's too much stress to raise a child like ours and the worst part is not knowing what is going to become of them.  But this movie has given me some hope as to Darian's future.  I only hope she will turn out like Luke.  After the movie, the cast hung out with the viewers and many people had a lot of great comments and questions.  I couldn't speak.  I wanted to, but this movie touched me to my core that I knew if I opened my mouth I would just start sobbing! How pathetic am I? There's one scene that just got to me, where Luke's supervisor (who has some type of autism of his own, but in a very cinical angry kind of way) Zack, asks him why he thought he (Luke) was alive, why was he born...Luke in his most innocent, childlike way doesn't dare give Zack eye contact, almost afraid to look.  Zack continues by telling him the reason he was alive was so normal people can pity him and feel sorry for him and remind everyone what a sad and pathetic world we live in...holy crap! I just never even thought of was so harsh, it hit me like a ton of bricks! Luke responded with anger by saying "No!" He was there with a purpose of accomplishing what his grandfather told him "get a paying job, find a girl, get your shit together"...I appreciated the director's bluntness and how he turned tragic scenes into funny scenes.  But this part of the movie really got me thinking of how others might see Darian and I know a lot of people see her and feel sorry, see us and feel bad for us.  I mean sometimes I even feel sorry for us!  But I have to say, when I see Darian, I see love, happiness, strength, unbelievable courage, struggle, sadness...but most of all innocence.  God bless her for being oblivious to the bad things us normal people have to deal with, the ugliness of people who don't know how to love any more.  I just pray I live long enough to get her on the right path, the path she's intended to walk, the path God has for her. I know she is in our lives to show us what unconditional is supposed to be, there is nothing more amazing than to see Darian look at me because she is REALLY looking at me and I swear she can see my soul and knows how much I love her.  So don't feel sorry for her or us, I feel sorry for those who don't have the privelege of having this unconditional love in their life, it's truly amazing...So thank you Alonso Mayo for bringing this movie to life...The Story of Luke will always have a special meaning in my life...