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.

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.

The Story of Luke...review

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 logic...it 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 that...it 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...

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!