The room at the top of the stairs sits empty....

I go upstairs daily. I have to, as that is where Carlie's room is. That is where the bathroom and shower are... I have no choice but to go up the stairs. When I do, I glance to my left til the first platform where I have to turn to go up the second set of stairs. The wall is covered in the photos. Sis being little, where curls adorned her hair in a soft honey color of light brown. I see her big brown eyes, and the little white dress with pink ribbon she wore. I see his photo, as a baby, in his little baseball suit, with a matching cap. I see the scared look on his face, of shock when the flash of the camera went off, laying on a piece of white fabric. His eyes are the deepest brown, almost black and the little pink cheeks. I see Carlie's photo of her in her first kimono, little pig tails on the top of her head, looking at the Japanese lucky cat. I see photos of my sister's wedding, of Bethwel, (our first international son to live with us from Kenya) as he graduated college with honors before he left for medical school. I see a family portrait of my side of the family when the older kids are small... my high school mullet hair cut, wearing a pink angora sweater... the bi-level makes me smile and laugh as I shake my head and climb the next set of stairs and my heart starts to beat rapidly yet again. I am getting closer, nearer... the familiar pit in my stomach hurts.

To the far left is Carlie's room. It has a net hanging from the ceiling. It turns a somewhat ordinary bed into a princess bed. Toys scattered on her floor. She is a little girl for sure with lotions, perfumes and lipgloss on the dressers... She has a little container that hold her brets, ponytail holders and head bands. Pillow pets are lined on the floor ready for the next school lesson, picnic or tea party, depending on the day. The shelves in the closet have become a personal library for my daughter that loves to read. I walk to leave the room and focus... focus... focus on going to the bathroom and changing the scentsy out or checking to make sure the night light is on for it... and I quickly turn to leave in a hurry to get down the stairs... and that room calls my attention every time. AND....
MY
HEART
ACHES
EVERY
SINGLE
TIME......................................................................................................................................................
end of story.

In the past week I have forced myself to look at some photos from when Tay entered the hospital for nearly a year... on and off. The band aids were peeled off of my heart... not slowly... FAST... and it... HURT. I know I need to face this hurt and yet, I simply, at times don't know how. I don't know how to face the hurt and smile. I don't know how to be gracious about it. I don't know how to be brave... so, it all sat, under these so called band aids for two, almost three years.

I today, had to enter that room. I was not looking for anything... other than how to mend a heart that longs for my son to be in my home. I opened that door and as soon as I saw the sun coming out of the room and knowing I was IN... I began to sob. Not the cute little cries that I can put my finger under my nose like a mustache and stop the eyes from watering... but like a damn ... Like Coulee Dam! How do I ever face this? How do I heal? How do I stop missing him so very much? To me it is as foreign as working on the engine of a car... lost... confused and frustrated. I want to just put the key in the ignition, fill the dumb thing with gas and just drive. Same with Taylor. I want to knock on his door and tell him ten minutes til dinner. I want to call him from outside playing basketball or riding his rip tide. I want to tell him to turn his music down or to turn the tv down as his sister is trying to sleep... yet... that is not going to happen. Instead, I search for the answers on how to be a rock of strength for him and for my girls as we face the many faces of autism and the other disorders that make my son who he is.

I love him just the way he is. He has the cutest grin when he feels shy, while turning red. He can tell when I am worn down, and offers a hug... EVERY SINGLE TIME. He reassures me not to worry about him. How can a mom not worry about their son that has the mentality of a ten year old boy, living outside of her home? It is not possible. He loves his video games and his magic card game. I don't care for either. He loves to scare me by hiding in closets and jumping out when I walk by. He loves taking things apart and putting them back together again. He loves the cooking torch I use to crystalize the sugar on my creme brulee to like off fireworks. He loves crabbing and walking down the dock to see what everyone else has caught. He loves being a big brother.

No more laughs come from his room. No more cries in frustration when he can't understand how to communicate his feelings. No more Chumbawamba or Santana at loud volumes coming out. No more sitting in the special chair to play video games that vibrates and plays music... no more begging him to wear his retainer or brush his teeth. No teasing and dancing as I climb the stairs about how I fell of the riptide or lost at H O R S E while playing basketball... just a room that is dark without him in it. The tv still sits on the dresser and the bed is still not made as he didn't like his bed to be made. His stop light still sits on his book shelf, along with his stereo and the picture frame with him and his sisters in it. The trophies he saved of his dads wrestling and judo days are on a shelf... they need dusting for sure... Mickey Mouse, Donald, and Goofy are on a picture on the wall and I smile knowing how much he loves Disneyland. The picture he colored and framed of Superman also hangs there. The large book of Marvel heros is on the shelf... how he loves them. The pair of jeans I asked him to throw in the wash three years ago, they hang from the post at the end of his bed. It is like a ghost town... everything the way he left it... keeping his space safe for him... as it had to be his way for him to be comfortable.

I sit on the bed and remember sitting there after his night tremors... just wanting him to feel safe and secure by my presence. As I stare to the side of me... my mind becomes a time machine and takes me back to gentler times. The middle drawer was at one time his bed. Sounds odd, but, he was so small when he came home from the hospital, I had to put him in a drawer... I was afraid he would get hurt in the bassinet and the crib... so a drawer it was thanks to the bright thinking of his pediatrician. That drawer, as I opened it is now filled with transformers and pokeman cards and games to his xbox. I cry as I run my finger on the wood... trying to forget how much my heart misses him. I see the coat he used to wear when he would run away and be gone for days. It hangs from a hook in his closet. I remember it being so wet I would need to go outside and wring the water out when the police would find him sleeping outside in an alley behind Baskin and Robins, and drive him home. My thoughts go to the police telling me he would stay calm and tell them, my name is Taylor, I am autistic, will you give me a ride home? My mind goes to all these thoughts... and... it simply is too much for one day... so... I wipe my tears, put the bandaids back on... walk out of the room with one last look... trying to listen really hard to remember the laughs that he would let out when he would watch I love Lucy... I cry... I come to the computer. I am determined to heal.

I see him often. I talk to him daily. We do lunch... he teases me... yet... it is not the same. His room is empty of life and joy. My heart is missing a link... it sits waiting for the day he can come home. Will that day ever come? I pick up the phone... and call him... just to hear his voice... and he tells me he just got paid and is on his way to get a video game. I hang up and I feel my chin start to quiver yet again, and those damned bandaids on my heart aren't doing the trick anymore. I want to crawl in my bed. I want to curl up in the fetal position. I want to listen to our song. I want him to jump out of the closet so I can yell and him that he will give me a heart attack at any moment one of these days and he is going to be really sorry when that happens. I want to rest my thoughts and fall asleep and I know that is but an impossibility.

I am supposed to be the one that teaches him how to treat women and how to be kind. I am the one that is supposed to teach him how to cook and keep a checkbook and write down in your check ledger. I am the one that is supposed to check on him when the night terrors happen, and plan camping trips and suffer through scary movies with him... ME. I am not only sad... but a part of me is bitter for not being able to do these things. My heart... it hurts... it is a mess... and so I will continue to put my money on counselors and try to avoid numbing items...

Will he ever understand how much I miss him. I wish Carlie was here to color with or paint her nails... anything... but... THIS.

Lemon Drop Cookies

Okay... I love to cook so much and not too many recipes make me go WOW.... I have been cooking since about first grade (where the obsession began I should say). HOWEVER, every now and again I do come across one of those recipes that I know I have to try and this is one of them.

First of all... if you have not been to the blog I am about to post you are silly, as she has fantastic recipes all the time. I scour her site as if these cookies are this good, I am sure her others are as well. Her photography is fantastic on the food and she needs to teach me how to do that. That is one thing I want to work on is the photography (and finding time to post...)

Her sites name is See Jane in the kitchen. I go there often. (insert, again when I find time... shoot). Just click on the purple lettering above. You need to stop by and give a look to the wonderful food she posts.

My son is autistic and lives in a home for disabled young men. He goes to school during the school year, but when school gets out... he is not able to and he gets bored easily. He only gets $10 a week after room and board etc that his SSI gives him. We are teaching him how to earn money as he will not be able to hold a job on his own. (Let's hope that changes someday with the living skills he is learning, but for now... he isn't able to.) So.... we have been making these cookies for him to sell by the dozens... etc. This will give him extra spending cash for events. He loves the cookies too... so it is hard to try to convince him not to eat them. I also usually bake for people instead of sending thank you cards... so I have been baking these as a thanks for those that helped while the kids dad went through surgery for his stomach cancer. Needless to say, I have been baking a lot.

You can find the recipe for lemon drop cookies here, but I am re-posting it as well. Again go see her blog. You will love it.

2 c. sugar

1 1/2 cup butter flavored shortening

3 eggs

2 tsp. vanilla

1 tsp. lemon extract

4 c. flour

1 1/2 tsp soda

1 1/2 tsp baking powder

1 tsp. salt

Finely chopped zest of one lemon

1 (6-oz) package lemon drops (sometimes these are tricky to find, I usually keep two or three bags in my pantry) (I found mine at Winco in the bulk section but you can also get them at a local Target... love Target!!!! )

2 c. powdered sugar

juice of two lemons

Preheat oven to 350 degrees. In mixing bowl, cream sugar, shortening, and eggs; add flavorings. Stir in dry ingredients, lemon zest, and crushed lemon drops (I crush them in my blender). Roll into balls, flatten slightly, and bake on parchment lined (if you don't use parchment, cookies will stick to pan) baking sheet for 10 to 12 minutes. Let cool slightly on pan for a couple of minutes. Make a glaze by mixing powdered sugar with lemon juice. Brush glaze over cookie tops. Let cookies cool completely.

makes 4 to 5 dozen cookies.

While on the subject of these cookies, I thought I would mention three of my favorite kitchen tools, since they are all used in this recipe. You can usually find each of these at TJ Maxx for a great price. The citrus press is my latest favorite, I use it for salsa and pico de gallo all the time. It gets a ton of juice out with practically no effort.

Conversations with Taylor....

Today, I woke up wanting to call my son. Ahhhhhhhh... it should be an odd feeling, yet, it is a feeling I have every single morning. It has been two years and it still doesn't feel natural that he is not in my home, his home; ALWAYS HIS HOME. I struggle to go past his empty room, the one he used to sit in for hours and play video games on one of his many systems... the one that he used to get so mad at himself when he would mess up in his games... (he is brilliant at games and can master the game through all levels within a couple of days. It feels like a waste of money as he masters them and then gets bored with them.) The room he used to sit in and examine his hundreds of match box cars and he would be in a different place when doing so. He was not in tuned with his surroundings, as he was so fixated on his cars.

Now, although I get to see him often and we talk by telephone, it feels odd. At this age many teens are out on their own. I am trying to wrap this brain of mine around that... he is 19... this should be eaiser. Then I go back to Amanda leaving home... moving out on her own... it wasn't eaiser either. It was a different situation though. I knew she is a woman that will not let people take advantage of. With Taylor, that isn't so.

Autism... there are so many different spectrums of it. My son is very high functioning autism. Hmmmmmmm.... what the hell does that mean? Really? What does that mean. I ponder this time to time.

I am blessed that my son is verbal. He is aspergers. That is high functioning. He doesn't walk in circles or talk to himself a lot. He doesn't rock back and forth... well at times if he is really nervous he will start to... but not like highly autistic people. The hardest part for me I think, and that I struggle with the very most in our relationship is how to treat him. I mean, always do we treat him with love... but... as in age or comprehension level. There are parts of him that are like a five year old child. He needs to be reminded to wear his glasses when reading... to take a shower, to brush his teeth. There are parts of him that are of about a ten year old. His maturity level is that of about a 10 year old as far as I am able to track or tell. I have to remember to talk to him like he is ten most of the time as his brain wires connect this pretty well. However, then he is like a 19 year old boy... wanting to listen to popular music, go to dances, drive. Sadly he will never drive, and he gets so very disappointed. He has several things going on... in addition to the autism, he also has oppositional defiant disorder, adhd, and a touch of ocd. That is common with people with autism... to have several things wrong.

It is funny... as often times people that know me want to know more about it... and their questions are sometimes shocking. I try to blow it off to I am approachable enough for them to feel comfortable in asking me. That is good to know.

I will never forget one time someone asked me... I wish it could have been different for you. I didn't know how to read that. I didn't know how to gage my emotions to that.

Here is my feelings on the matter. I don't wish it was different. I hope that Taylor picks up the needed living skills he needs to live a safe and healthy life. He starts to harm himself when he can't communicate well, and that is very upsetting for any parent to live through. That is why he needs 24 hour care. He is never out of site of a staff in the house he lives. He is never out of arms length reach from staff when he is out in the public. This is all for his safety. As his parent, I need to keep him safe. Autistic children have troubles forming bonds, so I needed to make sure he was doing social things and making bonds with others rather than just his family. I needed to know that he was getting life skills under his belt. He needs to know how to cook, do his laundry, shop, save money, make out bills. Due to his ODD, he takes me as his authority or as me bossing him around and that was a struggle for him. When he learns this through his staff, it is learning and not someone bossing him around. I need to know that when I die... he will have the keys to life that will help him succeed. (now that sentence just made me cry... I can't imagine not being here for my kids... but reality is that will happen someday. ewwwww....)

Since I so easily get distracted, back to the original subject... I don't wish things were different. I think that God gives these special needs to those He knows can love them without reserve. My son is my son. My son has taught me more about life than any other person ever. I am so very lucky to have him and I feel I am the person I am today though him strengthening me as a woman and as a mother. I can't imagine not having a special needs son. I can't imagine my life without my son.

The one thing that I hope he is able to learn or feel someday is love. He says the words. I love you mom. I love you sis. I love you dad. He says the words but he doesn't understand the devotion behind those words and that is hard for me. He gets a part of it I think. He has always been afraid of his dad or myself dying. That is a deep fear for him. He also is very protective of me and his sisters. If a man stares at me, he will tell them to stop... no boundries there, he will say what he thinks to them and sometimes at the grocery store it hasn't been pretty. If he thinks someone has hurt our feelings, he goes into distress mode... and it all goes to his autism. So I try to supress any sadness or stress around him. You know that love you feel towards your partner, or spouse. I hope for him one day, that he feels that. Not on a ten year old level... but as an adult. I hope he loves and will be loved in that way. The feeling of being cared for and that someone is our number one no matter what. I so want that for him and that is my biggest pill to swallow yet.

Our conversations are short and sweet. I try to drag them out as long as I can so I can just listen to how well he is able to communicate and see if there is improvement. He won't volunteer information, it is something that you have to drag out of him. So per our conversation last night...

Hi Tay, how are you?

Good mom, how are you?

I am good Tay. I can't talk long I am driving right now...
Mom that is against the law.

I am a rebel Taylor, what can I say?

Mom you are not... you will get a ticket...
What did you do today Tay?

Went to a movie.

What did you see... (insert, he said some name of a movie but I don't recall it)

Well what was it about son?

Too complicated for you to understand mom. Will you go to the office with me on Monday to show the ladies all your candle things?

Sure, but make arrangements as I have to sleep on Monday as I work Sunday night this week.

Ok...

I love you son...

I know you do mom, and I love you too... (I get a tear each time he says that, but he will never know)

I know you do son. Do you have anything you want to say to me or any questions to me?

Only that I love you mom...
I do too Tay... you have the best night... we'll talk tomorrow. I will see you on Sunday but call if you need me before then for anything...

I will mom... love you... bye.

I hang up... and I cry. It is a short cry... but I cry. I love my guy!

Ah.... graduation time...and a craft to do...

This is what I started with....



This evening Carlie and I are going to a graduation party for her pre school teachers son. I met her teacher, Ms. Diane (fabulous lady with the kiddos and kind to people... very active in our community) through an autism group she had years ago... well two years ago. Her son, is autistic as well. She really put a lot of time and energy into the groups and would have guest speakers to come and talk to us about autism. Cory Dunn was one of the speakers and was Brilliant. Anyhow... tonight is Devin's Bday and graduation party. I am glad we get to attend. It is very touching. He is a very sweet young man and she has done a very good job with him. She is going to glow with pride. Anyhow... not knowing what to get him... I thought I would make him something. I took a class on this long ago... then taught classes on it. I have 90% of this done but will need to get a photo of Diane and her son tonight and, one with him and his friends... and I will add them. For tonight... he gets it like this... and he will get the finished project on Tuesday. I wanted to show you before I add the photos to protect his identity.

This is an altered canvas frame. It is something to hang on the wall. It is hard to find boy colors when it is not your own boy. I have made one for Tay in the past with waves and surfboards... but not for someone elses teen.
mixing paint...
painting
Picking out paper


Tadddddaaaa

I picked out the word LOVE and Story.... as we all need to be loved... and we all have a story. I antiqued the words... to make it match a boy theme of colors.... We are slipping a $50 in the little envelope. Hope he enjoys. Tell me what you think but be gentle.