Monday, June 30, 2008

Let there be sushi, and 4 wonderful hours!

For the first time since April 24th, yesterday, we were able to take you off hospital grounds. I am so proud of you for being able to be on a high level so long that they let us whisk you away for FOUR GLORIOUS and WONDERFUL hours. I had a great time with you, as well as Big sis, Little sis, Spence and Dad. It means so much to all of us, but it just touches my heart so to see how it means something different to each of us. For me, I feel more complete when my family is all together, as odd as that might sound. When you aren't around, and Mandie isn't living at home due to her having her own house now, it just feels so incomplete at times. But yesterday, we weren't in the room just talking on the couches.... we weren't in your room visiting on your bed. Although I love to go to your garden and see what you are accomplishing with it, and I love going to the gym and watching you high tide and seeing you shoot hoops while Little sis plays hop scotch with Mandie, dad shoots hoops and Spence takes pictures.... yesterday we got to walk on the city streets. We got to go on elevators and escalators and go into stores. You got to help put Carlie in her car seat, and you got lots of hugs from her when we were driving. You got to spend time with Spence and Mandie by yourself. It was so exciting son!

We took you to Todai just like you wanted and this photo makes me smile. There is my Taylor on his third plate of food. You were slowing down on the sushi, but there you have your desserts. Of all the desserts you could have, there you are with green jello. You always have loved jello, and especially that of the green color. Here, you were being a nice brother and letting Carlie have some from your plate. That doesn't surprise me as you always are so good to her and try to take care of her so much.
I am sorry I had to tell you that Grandma Dodie passed away. I know that death affects you even more than it does most people. I would have liked to skip that part of the day all together, but we don't feel like we should lie to you or keep things from you. It is going to be ok.

I am excited that they have said that if you stay at a high level you can come home for a full 24 hours son! Not 4.... 24. I feel now, like I am being stingy. I am feeling like I am getting so spoiled. I keep going over in my mind who will be here. I am thinking of your favorites, what should I make him to eat. What should we do.... I couldn't sleep last night I was so excited.

Just keep on keepin on buddy and do it with a smile whenever you can. Just know you are so loved. I wish you knew all that was going on in our lives, wanting to help you. I am not amazed at how much your sisters love you really, but more, I am amazed at how much they will do to make that so clear. Car is so little but Mandie is going above and beyond.

Sunday, June 29, 2008

Taylor gets an outing!

Today, Taylor gets an outing from the hospital. I am so excited. Some of the excitement is knowing that I get to just see him for the day, but the majority of the excitement is knowing how excited he is at the fact that he gets to leave his unit. There are also some fears that I am having. I am afraid I might say something that will set him off of course. I don't want that. I am afraid of him being around too many people might also set him off of course. However, those thoughts are just in the back of my head. Most of me feels nothing but pure excitement.

We had a benefit yard sale over the weekend. We ended up making a little bit over three hundred dollars, so that is very exciting. We also saved some of the things that didn't sell and we are going to try to sell them on Craigs list, so our earnings might end up at $400. I hope it will be good with the craig's listings.

We went to a Hawaiian concert at World Beat last night which was fun. It was still warm when we went there at about 7, but by the time we left there was a small breeze that felt so nice. I was excited to do something with the family. I did however have some anxiety issues going, and then with Taylor not being there, and being excluded from a family event, it was hard for me also. It seems like times like so are the hardest things to handle at the time.

Back to Taylor getting out for the day. A couple of weeks ago when we discussed him being able to leave in the future, he said, perhaps he would want to go bowling. Then the subject of swimming came up and he was excited for that. Now, he has instead chosen to go to Todai which is a Japanese restaurant in a mall in Portland. That is one of his favorite places to eat (besides McDonald's of course.) It is a little spendy, however, we were so glad he was able to communicate this all on his own.... That it really did not matter how much it cost. Him being able to communicate it was so impressive. He usually says, wherever you want to go, and leaves it like that, so his need is never met as he wasn't able to communicate it properly.

Amanda and Spencer will be making the trip with us. He will be so excited to see them both, so that also is exciting. I don't think that he is aware that they will be there. I am excited to see what today holds for us.

They said that there is a possibility that he might also be able to come home on the 4th of July for a home visit, so I am anxious for that also. Our block has a huge party and we all bring our own meat to bbq, their own beverage and their own plates etc.... Then each person also brings a dish of sort to share. Each family brings some fireworks so when it gets dark, we let them off. I guess it has been a tradition for years here. Last year was our first year to take part since it was our first year here, but Taylor, especially loved it.

Off to get ready to go see Taylor, Amanda and Spencer.

Friday, June 27, 2008

Today starts a benefit yardsale for Taylor's Trip

Today, at 9:00 am, a yard sale will be in progress trying to earn money for Taylor to go to Disneyland. I love the thought of getting more money for us to get him there. I however don't like the idea of sitting in the hot sun all day having people wanting to barter prices on items. That is alright if that is what it takes to get Taylor to Disneyland like he wants.

It makes me miss him to tell you the truth. He loves, loves, loves going to yard sales. He is always searching for things and digging through boxes. He is so funny when it comes along.

We have been told that he is having some great days at the hospital and that is such a good feeling. We know, however, it is going to make it twice as hard for him to leave and go onto the next phase.

Wednesday, June 25, 2008

When people go above and beyond what is expected....

So, many people don't understand about autism, especially if they have not lived around it their whole life. There are some people that when they hear that Taylor is autistic or has Asperger's Syndrome, they shun away, as they are afraid that they will say something wrong, or that they may have to witness something that is not comfortable. Some people just don't want to try to understand.

My daughter, Amanda, has been dating a young man named Spencer. They have dated for about a year or so. I think that Amanda had probably told him about her brother's needs, but I don't think that he really understood until he started to spend time at our family functions.

So, let's back up. When Taylor get frustrated and runs, or has a melt down.... life stops in our family. It can be for 5 minutes, it can be for 48 hours if Taylor runs and is gone for a couple of days. Immediately one of us calls the police to report a run away and one of us jumps in a car and start the long and grueling search for our son. It is horrifying. It is sad.... at the moment, all you are going on is total adrenaline and it just keeps you going, searching, and wanting to find our son.

Somewhere along the way, Taylor started to listen to his sister much more than he would listen to us. So, the call would always go to her also. Bless his heart, Spencer has dropped things again and again. It is odd to watch or think about. If Taylor sees our car or van, he will run harder, faster, further. If he sees Spence's jeep, he stops like a lost puppy dog and they open the door and he crawls in. Most guys would run from this... most guys would shun this. Spencer steps up to the plate and wants to mentor him. He wants to make a difference. He wants to understand.

Now, most guys would run from this.... especially when they are 23 years old and has a lot filling his life. Spencer has had his feelings hurt over Taylor's actions and behaviors because I don't think that he understood the magnitude of the disability. However, he has sat in hospital waiting rooms, emergency rooms, and has been up til wee hours of the morning staking out parking lots and combing the streets looking for Taylor when there has been another melt down.

This speaks volumes on someones ability to think outside the box. It speaks about the feelings in their heart.

Cheers to Spencer. I know that Taylor loves to hear from him and his sister when he is in the hospital. Sometimes words can't express the thankfulness in the heart. Thank you Spencer, from Taylor, and Taylor's mom and dad....

Autism Tip of the Day: The IAN project to learn and you can give info to help with autism research.

Tuesday, June 24, 2008

This Child of Mine By Sally Meyer

This Child of Mine....

This little child of mine
who is he?
where did he come from
and why is he mine?

I often sit and wonder
at the closing of the day
who trusted me
with this little one
who sent him here to stay?

This little child
who breaks my heart
yet fills it with such joy
what great thing have I done
to have this little boy?

When my tears run freely
joy and sadness mingled
what a mixture,
a blending of such emotion
who gave me this little child
and why am I so blessed?

I pray at night for answers
and call out in the dark
Thank you for this little child
whoever he may be,
he came from some unknown star
to bless and comfort me.

Autism is not the end of the World. . . . just
the beginning of a new one.

copyright. 1999. Sally Meyer

I found this wonderful poem on the net by Sally Meyer and it is so true. Through the heartache there is so much love for my son, knowing his trials and tribulations, and the rough, rocky, bumpy road ahead. There is also so much hope and so much admiration for my son.

Today, I was sitting here missing both of the men in my life. My son in the hospital and my husband is in California visiting with his family with our baby. It just lets my mind drift back to when they first met. Taylor liked Gordy so much and called him Gordman. He would rush home from Kindergarten and want to immediately call him. He wanted that connection as a young boy. He had my dad, and my brothers in his life, but he wanted someone to himself and he found that in Gordy.

I remember a night when my daycare closed. I was a single parent, and to find a daycare open at night to work my job, it was tough. Gordy would take the kids to his dorm room at the college and watch them for me. He would take them to the dining hall and they would think that was so cool (for Pete's sake, it was cafe food.... not a gourmet meal)... but to them... it was everything. He would take them to Jack in the Box. They were spoiled from day one with him as they got so much attention from not only him, but his students. After working and coming to pick them up, I expected to find Gordy in bed sleeping. There he was in his recliner. He had been crying, and I knew it was going to be that moment when he broke up with me.... why else would he be so sad? I asked what was wrong, and prepared myself. I know I started crying too, as I really was falling in love with this man. He looked at me and said, your kids asked me to be their dad tonight. My heart sank.... not only was this going to scare him off, it was going to break their little hearts. UGGGGGG! Oh crud here it comes. His mouth was opening and I started to feel sick to my stomach. *How do I deserve their love?* Those are the words that came from his mouth? He didn't believe in himself as a person that the kids would love. How could they NOT love him? I am amazed at the love that the kids have grown and built with Gordy. Different loves... they love him for reasons and me for totally other reasons.

I get this ping in my heart when I think of their relationships. I think that there are times that we all forget that he isn't biologically their dad. Seeing him go to the schools to advocate for Taylor. Seeing him look for things that they really like and are interested in. You can see his protective side when they are hurt or confused.

I am blessed. I am truly blessed! Carlie adds so much to that element also, so with that, we are blessed to be a family unit. Even in really cruddy and confusing times, we are a unit, we are united and we are one.

Monday, June 23, 2008

Update on Disneyland Fund For Taylor's Wish

Many thanks for all who have helped. I appreciate it.

Coutries visiting our site.

It is fun telling Taylor which countries have visited a site all about him and educating people on Autism. Thus far these are the countries.

South Africa
United States
United Kingdom
Saudi Arabia
New Zealand

Do you remember when?.......

Uncle Bernie was at Auntie Terrie's going away party and he was trying to get Aki to do the Snuffalupikis Dance, and your mom caught it on Camera? Just to help Aki out here a bit....

Who Loves Ya Baby?

Here is your Salem Family that loves you Taylor. We are all sending you our love.

Out of the mouth of babes,and nursing infants You have ordained STRENGTH, Psalm 8:2
Just reading this out of Auntie Terri's book she gave us. It made me think of you... stay strong you have strength, and when you feel weak, God is with you, and your parents and family are here to help you pick up the pieces.

Taylor, yesterday was Auntie Terri's going away party. It was a very sad day in my world. I was sitting there cooking food, (and you know Mama likes to cook to entertain) and I just kept thinking how sad I was that I won't get to see Auntie Terri too much anymore. It made me get stressed out a bit, so I kept cooking. I then just started to have short bouts of sobs that would just escape from me, without even really knowing it until I could hear the sound. Dad came down and asked what was wrong, but no words would come out, just more tears. I was so sad, as I knew I would be seeing Auntie Terrie, Uncle Bernie and Uncle Ryan. I knew Spence and sis were coming over, and there was one person missing from our Salem Family, and that was you. That is really hard for me.

I am glad you were able to talk to everyone on the phone while they were here. Auntie Terrie and Carlie had made some really cute little figures and painted them. They put a face in each to represent our family. It was such a kind gift and very thoughtful. She also gave us some photos and some of them are of you from her two visits to see you. She also gave our family this book called Blessed Beginnings. It talks about how every child is a gift and from God. It was so heart touching. I knew that but it is so enlightening to read the words again so they can really touch my heart.

Uncle Bernie and Uncle Ryan were the life of the party. They were teasing Aki. I think you would remember him from their apartment when they helped them move. He is a nice young man, but not from Willamette. They were poking fun of him, and he was laughing. A few stories came up about you and sis when you were staying there with them when we had Carlie, and Uncle Ryan crawled onto the dryer to scare you kids. We all laughed as you loved it so much.

Uncle Bernie wrote today and said how good it was to talk to you on the phone yesterday. We gave them the cow from the Parry House like you wanted us to. We gave Auntie Terrie one also like you said. I however, didn't get the chance to write to her for you like you asked. You were so vague.... when you say write everything nice that you can for me because she is so nice, I sit and start and get all teary and have to stop. So, I promise, before she leaves on Saturday, I will totally sit and write her everything nice for you.

Son I love you, and I hope that there will be a day, we can sit and read this blog together and I hope that there is a day you will understand the depths of our love. Dad said that you sounded really good on the phone yesterday and you were even kidding around and joking. That is so good. I want your heart to be happy and content son. If you never understand the depths of our love, the the way we view love, that is okay, for I love you, just the way you were made son.

Forever your mom~ I love you to the moon and back...

Sunday, June 22, 2008

Visiting Taylor

It is time for parents to teach young people early on that in diversity there is beauty and there is strength. Maya Angelou

We went to visit Taylor and have a meeting on Friday and here are a few photos that I got while on the visit. It was a great visit. I was really impressed by the carving in this one particular piece of cement when we were there. There are dedications throughout the site, and this is one I came upon. Jesus Christ's Love. It will see us through. I really needed to see that, that day and for the past couple year, as this all feels like such a punishment, such a sacrifice to our family!

For some time now, about 10 or 12 years, I love to get photos of people from behind. Unposed! This is such a fun photo. Taylor was taking Carlie to get a drink of water after playing on the play ground. It was hot out and he was being thoughtful. This is them leaving the equipment on the playground.

This is the kids on the slide. Usually she is content going on her own, but this was a larger slide and she wasn't too sure about it, so Taylor took her down a few times. They both enjoyed it. They do have a nice play ground there for a unit of much younger kids. This site also used to be an orphanage a long time ago, so there are many building and it is a beautiful setting.

Autism Tip of the Day! Since they don't process the same as we do, it is best to say what you mean. For instance, if the person with autism or Asperger's is running, and you don't want them to run, many times you can't say "Don't Run", all they hear at times is run. You need to say walk, walk, walk. They will then process it more easily and their behavior will change more quickly.

Saturday, June 21, 2008

Christ, I give you my son

I have sat here today in such a rush. I just feel antsy, and jittery. I am a mother with a broken heart for her son. I am a mother who is worried for my son. I am a mother who has had to take control to make sure that my son's disability is something that is no longer missed by specialists or doctors, or teachers or anyone. Sometimes I don't like myself too much when I have to take control as much, as I know the thoughts running through other's heads... that I am a *B* ! I will gladly wear the name if that is what it takes to get him the help, but it is still not too fun when you know what kind of person you really are.

I saw Taylor smile twice yesterday. Not the fake ones he does to get his picture taken, but the kind that you see the light in his eyes. It touches my heart so much to see that light.

I know biblically people have had to sacrifice their child as you asked them to. What a hard task. I don't know if I am there yet God. I can't lie as you are always aware of what is really in my heart. I could not take my son to the alter and walk away knowing he was going to die.

What I can do is put every ounce of faith that anyone can have in you, Christ. I know you are going to help my son. It might be through doctors really getting some great medications for Taylor. It might be by finding Taylor a great residential living. It might be you healing him. It might be giving him enough social and living skills he could remain at home. It could be Taylor making some friends his own age that are great influences. God I don't know your plan, but I trust it. I trust you. I trust the path that not only will you be taking Taylor on, but my whole family.

May your grace live through me somehow. God, let us reach as many people as we can and educate on autism and people with special needs. Often they are forgotten, and then they feel broken or thrown away.

Bless Amanda on her goals to get the vacation planned. Let people open their hearts and hear the love she has for her brother, so they order baked goods from her. I know once again you have a plan. She gets discouraged. She feels like she needs to do this. Let her know how special she is God.

Bless our family. Keep our unit whole and safe during this time of sadness and heart ache. Help me overcome my depression and health issues at hand. Help me sleep and feel rested.

Tonight, touch my son, and let him know he is in my heart today, and always! I will not leave his side no matter how many miles separate us.

Friday, June 20, 2008

More in depth on my group therapy for Autism

So, not sure what to write more about it. The group actually exists now, of 10 families including mine. That is about as large as it can get due to the space that there is (which is actually large for a home, but some families have more than one person coming, like Amanda and I, and hoping Gordy for the future) so, there is up to 18 people in the living room. The kids go downstairs as the person who started the group runs a daycare out of her home, so it is a perfect setting.

The lady who started it also has a book club that I am going to get Carlie involved with. You read so many minutes a week and you get tokens and you turn them in for prizes, etc. Since Carlie is young, it would obviously be with us reading to her. It is going to be a fun activity to do with her.

The speaker, again is wonderful. I was very impressed. He is a very nice man.

Today we saw Taylor in Portland. It was wonderful to see him. His hair is really short! He told me that he wanted it cut like a family member that we have named Kevin that lives in Hawaii. It made me happy that he wanted to be more like someone that is a role model rather than a child that has no supervision due to their parents being to busy drinking, drugs or just not giving a damn.

We stayed and ate lunch with him also. It was nice. He was antsy to get back to his unit. After we were done eating, we walked him back. We went to his room for a bit. Carlie took him a cat that she had made at daycare with those squiggly eyes that move. He liked that.

We had taken him a Japanese soda with one of those marbles in it, and some of the yogurt drinks also that he loves. I also took him in some Chicken Pasta with onions, peppers, and motz cheese. The sauce on it is a combo of marinara and alfredo. It is one of his favorites. I also took in some rhubarb cobbler left from the potluck last night. He was excited to get home cooked food.

We played in the gym for a bit, and then we took Carlie to the playground. It was nice to watch them play together. She gets so excited each time she sees either of the kids.

It was a good day....

My autism tip of the day is really not a tip, but a book suggestion. Last night I found out that Dr. Suess was bi-polar which also means manic depressive. Mr. Dunn showed us a book that was not published before his death, but after his death. His wife hired an illustrator and put his words into a book. It is called My many colored days. It is a fantastic book, especially, in my opinion, for those kids that are not able to communicate well about their feelings. They can associate their mood or their day with a color that Dr. Suess has put to his famous words that form catchy poems. It is a wonderful book! If you have a child with a disability I strongly recommend it. If you don't, I still strongly recommend it.

Support Group Last night!!!!

My first support group. Amanda went with me. I was scared. I knew I would cry and I didn't want to cry in front of strangers. Amanda is always my rock. Gordy wasn't able to go because he stayed home with Carlie. Apparently they have a daycare there and that was nice, so I hope next time my husband can come, or Carlie, or both.

I am on my way to see Taylor at the hospital, so I will write more later... but for now, just wanted everyone to know support group went well. I met some very nice people. Wonderful people.

The speaker, Mr. Dunn, who works with behaviors and behavior modification, was a very nice, and caring man. It was nice to meet him.

Thursday, June 19, 2008

Tonight Potluck for my FIRST support group meeting

Just when I need it most. I am going to my first meeting tonight for Autism support groups. It has been a group that has been in place for several years I am told, but I just found out about them recently. What is so exciting about it is that there is an autistic specialist that is volunteering his time to the support group for 12 months. This is month two I think. The woman raves about him and I am just so excited to learn more. I just want to keep on learning more. The more I know the more I can not only help my son, but other's in the same area. I just feel thirsty for the knowledge of this disability. I want to continue this journey. Amanda is going with me, so that she can personally talk to the doctor about his thoughts on her getting on track to help special needs people. She doesn't want to be a doctor. But he might have some great volunteer projects that she could help out with or get her on the right path.

It is a potluck. I have been so busy with Taylor's room and trying to focus on getting better that I had forgotten until just now that I need to bring something for the potluck. So, that means I need to go to the store to get something to make. Not sure yet, but I have my feelers out.

Autism tip of the day: autism is not caused by drinking or smoking. Those things might cause asthma or fetal alcohol syndrome, but not autism. I know in my mind, when I first found out, I thought long and hard and I blamed myself for his disability. I do know that part of this can be in his genes. His biological father was diagnosed hyper growing up, had a hard time in school, etc. His moods would also change at a drop of a hat, and I see that in Taylor. However, I do not think that his biological father had asperger's, but did have the ADHD component that Taylor also has. Bottom line, you can't beat yourself up over this. This is nothing that you did, or that I did. This is just how our babies were made. It is hard not to blame ourselves, but try not to.

Wednesday, June 18, 2008

Labels and how they can make us feel.

There are labels that are put on us each and every day. Sometimes those labels might be labels that we put on ourselves, and sometimes those are labels that others put on us or how they make us feel. I was just sitting and doing some self reflections, and I realized some of my labels. Mother, wife, daughter, sister, aunt, friend, baker, cook, scrapbooker, giving..... then I started thinking of labels that are on me due to life circumstances or labels that I have put on myself due to things in life. Fat, unattractive, protective, failure (due to not being able to meet my son's needs) opinionated. Need I go on. Some of these are from my past, some because of how I feel about myself when I am stressed.....

Then I start to think about the labels that my son must put on himself. I can't imagine not having any self confidence at all due to being ridiculed each and every day, or being laughed at or pointed at or stared at.... even physically harmed at school with people throwing things at him, or hitting him. (Going to the vice principal didn't help... Asperger's kids are labeled trouble. Even though there were witnesses that saw people do this to our son, it wasn't the kids who bullied fault, as they said Taylor was the aggressor. Vice principal didn't interview anyone else or even speak to us about what WE PERSONALLY SAW HAPPEN to our son). If people think for one minute that the schools understand disabilities, at our son's school, they are sadly mistaken. However, my point to my feelings that I am not getting out very well is this. I want my son to see the great labels he has.... I want him to see all the good he has. It saddens me that he must feel so alone in this.

My son's labels, Son, Brother, Grandson, Nephew, Funny, Silly, Comical, Genuine, Caring, Big Hearted, Generous, Talented, Smart, Handsome and Skillful.

Please don't label disabled people negatively, as I am sure they do that enough on their own.

To the moon and back buddy, to the moon and back.... forever your mom.

Today is the day I just have to force myself to do it.

As much as I hate it, as much as I don't think that I can do it, today is the day I have to go into my son's room and clean it. I haven't gone inside it but once or twice since he left. It was really soon after he left, and I had to take some laundry in there and get some things for his bag to deliver to the hospital. I walk past it, and it makes me sad to not have him here. So, because I get so sad and so panicked by being near it, I have avoided it like anything.

It will always be Taylor's room. I won't take his things out and turn it into a craft room or spare room. That is my son's room. If and when he ever gets home visits from the hospital or his assisted living, I want him to have HIS ROOM TO GO TO. I want him to know our home will ALWAYS BE HIS HOME. It stresses me out a lot if he thinks that we are abandoning him, when we are trying to do what is in his best interest. This surely is HELL for me to not be around my son and know that I am meeting his needs.

Maybe I can do it in increments.... go 15 minutes, stop... etc.... give myself a break from emotions every now and again. IT IS A MESS!!!

Next week my husband has to go to California with Carlie to see his folks. It is good for them and I wish I felt strong enough to go too... but just too much for me to deal with here. I was thinking about painting his room a different color. I am not sure. We shall see. For today, I just need to get it cleaned out.

Autism Tip of The Day: We are our child's expert! We need to remember this. Often times since we know our child more than anyone else, we need to stop the doctor's or counselors from decisions that are not good for our children, and often times that is sticking to our gut instinct. One time a counselor told me that Taylor wanted to play with a young boy down around the corner from us. We had had bad experiences with not only the boy, but his parents. They let their son play with air guns, and the language and terms he used were very inappropriate. The counselor told me in front of Taylor that he wanted a chance to play with that child again. It was totally inappropriate for her to do so, as she should have done this away from Taylor. When I said, no, absolutely not, Taylor went into meltdown mode. I was the bad guy. I was wrong. My husband and I decided to listen to her advise and let there be very supervised visits amongst the boys.... and all hell broke lose. I should have respected my original decision.

Another time, a doctor, again in front of Taylor, asked me how we were going to work on Taylor getting his driver's license. WHAT!!!!!!!!!!!!?????????????? He said he had been speaking to Taylor and he really wanted it. I told the doctor that I felt very uncomfortable with that conversation at the time and I didn't think we should talk about it right then. In all of his wisdom and knowledge, he told me no, this was a great time to talk about it. (In fairness this is before the vineland testing had been done and Taylor's results came back.... but we his parents knew his living adaptability.) I let the doctor know that we didn't feel that our son had the responsibility to drive. We let him know that he can't brush his teeth on his own without prompting about 20 times a day. We let him know we didn't feel it would be safe for Taylor or anyone on the road. With all of this in mind... Taylor was getting angrier and angrier. Taylor stormed out of the office when it was time to go. He called off our Taylor and mom date for Jamba Juice and he that night ran away. Again so upset and not being able to communicate it. My husband called the doctor right away letting him know it was unacceptable to be bringing things like this up in front of Taylor and he should be coming to us with these ideas first.

We are our child's advocates.... Always!

Tuesday, June 17, 2008

Always hugs for big brother!

Hugs are always something that are nice. I still can't believe what a good brother Taylor is to his little sister. He loves her so much, and she obviously loves him. When I look at this photo, I can tell how much he needed her hug right then and there. That was when we very first got to the hospital to see him. She always gets so excited that she actually squeals with delight.

This is when we were about to leave. Taylor took us to his room to show us he had moved to a new room. Now in their rooms, all there is, is a bed. Carlie tried to jump on his bed, but we quickly scolded her. You can just see on each of their faces that this hug is more of a sad hug. I am so glad that Taylor still likes hugs from his sisters. If you enlarge the photo you can see a tear drop in his eye. Makes me so sad!

My Grandpa Dave and Taylor

My Grandpa Dave loved me. He was a farmer all his life. He loved being around kids. His laughter reminded me of Mr. Edwards on Little House on the Prairie... a laugh that came from the belly, or from the toes. He was a good grandpa, but had some ideas on how to raise kids... as he was from a different generation. He had fun just pittling around his farm and Taylor would not be far behind, when we would go up. He would follow him everywhere.

My grandpa and I got into a huge argument one time while he was at my home, trying to help me with my car that had broken down, something to do with a thermostat and the car would overheat. Well my grandpa took a break and was talking to the neighbor. The neighbor was just about my grandpa's age... so they struck up a conversation. At the time, we were told Taylor had ADHD and not autism. So... the neighbor started to tease Taylor, and he was teasing him for quite awhile. He was calling Taylor a skinny runt (which he was) and Taylor thought if it was time to be truthful, he would tell the man what he saw... Taylor told him he was an old man. My grandpa took that to be very disrespectful (and I wouldn't really want Taylor talking to people like that) but, what really upset me is that he grabbed Taylor by the hair, in the bang area. Like a mother hen, I flew out my door when I heard Taylor crying and there was just a big confrontation and I told my grandfather to leave my house. I was a single parent at the time and had nobody to really vent to.... so I called my grandma and told her he better call me when he got home. She did. He made a comment about he loved Taylor just like he loved the rest.... ( so was he saying that because he thought Taylor was bad, or because I had Taylor being a single parent, or because of his ethnicity???? ) I took offense to it and just really made me upset. I told him not to come back to my home until he apologized.

The call never came. I missed him and hated not seeing him. I mean, months had gone by, maybe nearly a year. I swallowed my pride and called him. He acted as if nothing ever happened. My heart was hurt, but I was so glad we were on speaking terms again.

Fast forward a few years. My grandfather got cancer. It was on his lip first, and then in his jaw and glands. It was awful to see my big, strong grandpa wither away. The last time I saw him, was at my wedding. He had just had a surgery. There was a drop or two of blood that got on his shirt. When we danced, he apologized for the blood. Are you kidding? He should not have been there, that is how sick he was... yet here he was at my wedding, dancing with me. I said my final good bye to my grandpa a few days after the wedding as we were leaving back to Iowa. Hardest day of my life probably. Knowing you will never see someone again... not until heaven.... a huge pill to swallow. It took me forever to leave. My heart hurt so bad. I didn't want to go. I just wanted to stay. We had to leave the next morning.

Fast forward a few more months. I would talk to my grandpa on the phone from Iowa. The cancer was so bad, I could not understand a single word he said. A couple of times I think he was crying from frustration. I would put my husband on the phone, and my daughter on the phone. None of us could understand him. We would say, oh really grandpa, or well that's nice.... it was really uncomfortable for all of us. I felt bad for him. Then Taylor got on the phone. This is the same little guy that had his hair pulled by Grandpa.... he didn't care. He talked to Grandpa about baseball and fireflies and going to the farm in the Amish community. He carried on conversations with him for 20 to 30 minutes at a time. It was so wonderful to see my son with a disability and my dying grandpa have these long talks. I believe that God did that for Taylor, and God did that for Grandpa. My heart still fills with so much emotion when I think of it.

As for now, I think of Grandpa often. Now, I walk Relay for life, and each year I make out a sack for him. This year, I got a picture of the sack... Grandpa, this is for you, but this is also from a little boy who loved you, even if we didn't see eye to eye.

My grandpa on our last visit before I had to go home, apologized for the hurtful things he said about Taylor. He told me how much he loved him, and he knew he had made mistakes. My heart melted.

Autism Tip of the day and Asperger's Syndrome copied from


  • lucid speech before age 4 years; grammar and vocabulary are usually very good
  • speech is sometimes stilted and repetitive
  • voice tends to be flat and emotionless
  • conversations revolve around self


  • obsessed with complex topics, such as patterns, weather, music, history, etc.
  • often described as eccentric
  • I.Q.'s fall along the full spectrum, but many are in the above normal range in verbal ability and in the below average range in performance abilities.
  • many have dyslexia, writing problems, and difficulty with mathematics
  • lack common sense
  • concrete thinking (versus abstract)


  • movements tend to be clumsy and awkward
  • odd forms of self-stimulatory behavior
  • sensory problems appear not to be as dramatic as those with other forms of autism
  • socially aware but displays inappropriate reciprocal interaction

Researchers feel that Asperger's syndrome is probably hereditary in nature because many families report having an "odd" relative or two. In addition, depression and bipolar disorder are often reported in those with Asperger's syndrome as well as in family members.

At this time, there is no prescribed treatment regimen for individuals with Asperger's syndrome. In adulthood, many lead productive lives, living independently, working effectively at a job (many are college professors, computer programmers, dentists), and raising a family.

Sometimes people assume everyone who has autism and is high-functioning has Asperger's syndrome. However, it appears that there are several forms of high-functioning autism, and Asperger's syndrome is one form.

Our son is classified as high functioning with Asperger's because he knows how to speak and can carry on a conversation, yet, his does not adapt to live well. He scores that of a three to five year old in some areas of being able to take care of himself on his own. It is very difficult to watch.

Monday, June 16, 2008

Sometimes Autism Is Silent

There are times that Tay just sits and thinks. He is silent. You don't know what is on his mind. He is not happy, he is not sad, he is just there. This picture from Saturday reminds me of that. Again, my son, a piece of me, a part of my soul.

My son, Taylor

Missing Pieces by

Missing pieces video Mark Leland

The song that represents Autism!

People with Autism have people who love them...

I sit and see people at times stare at my son when he doesn't behave the way that most kids his age might. The look of confusion on their faces makes in hard not to notice. These are adults. They should know better. Yet, they don't! That is just so disheartening at times.

I want everyone to know, that even though these kids might seem odd or out of place, they have family that love them, just as you do, or your kids. I want you to know, that by no means is it their choice to have this disability. Whoever would want that? Surely not anyone that I know.

He has two parents that love him, and two sisters that love him and are crazy about him.
My son is lucky... he has 4 grandparents that love him....
He has seven aunts that love him.
He has seven uncles that love him.
He has eleven cousins that love him, soon to be twelve...
He has people that weren't born into our family, but have just become a part of our family.... Kevin, Bernie, Ryan, Dani, Auntie Terrie.

Just know, that these aren't bad kids, or weird kids, or kids with nothing going for them. They are kids with disabilities.

They love
Sometimes they laugh
They feel
Sometimes they cry
They want to be "normal" if they are aware that they are not like the other kids.

The hardest thing to hear as a mother with a son with a disability is, when he tells me he wants to be normal like all the other kids. You don't know how much that breaks my heart.

Next time you think someone is odd, or seems out of place, give them a smile and say hi. You don't know how much it will mean to them.

Demarle Baking Product Drawing When Donating!

June 16th, 2008 through to July 15th 2008 Demarle helps bake a wish!!!

I am not sure if you are familiar with Demarle at Home, but if you are a baker, or a cook, this is something that will benefit your cooking. You will be hooked! You can go to the Demarle site to get more info on their products. I sell these products in my off time, although I have not done a show in months and months due to the issues at hand with Taylor. These products are used by professional chefs and they are made in France. You do not need to use any oils or sprays to help the product not stick to the pans. My daughter has been coming over lately and begging to use some of my personal items at hand to cook with as she is doing bakes sales from time to time at her job. This is technology and you will be one happy cook when you get these in your hot little hands.

I have a little bit of stock on hand, and I am giving this to my daughter to have a drawing at work. These are new, and have never even been used, or taken out of the box until now.

You can donate $5.00 to her fund, and you will get 5 tickets for the drawing. $1. per ticket
You can donate $10.00 to her fund and you will get 15 tickets for the drawing. 67 cents per ticket
You can donate $20.00 to her fund and you will get 40 tickets for the drawing. 50 cents per ticket
You can donate $30.00 to her fund and you will get 90 tickets for the drawing. 33 cents per ticket.
You can donate $40.00 to her fund and you will get 160 tickets for the drawing .25 cents per ticket.

The items that are going to be given as a gift for the donation winner are as follows: I will link them to the demarle page for you!

Flower Mold

Fluted Square Mold
Fluted Bundt Mold

These each are valued at $33.95, which would bring the value to $101.85, and the shipping is included in your donation for the drawing.

Happy Bidding! Good Luck! If you save this for yourself, you will love them. If you save them for gifts for the bakers and chefs in your life, they will love YOU!

Once your donation was made, either through the mail, paypal, in person or by credit card, she will email you, or give to you in person, your ticket numbers.

You can look for the donation key on the left of the page if that is the way you want to do it.

Sunday, June 15, 2008

Good night Taylor

I remember when you were little, our saying to each other, between Amanda, You, and Myself, was "Love ya to the moon and back!"

I want you to know son, that even though you may never get to read this blog, that even though you are not a little man now, but a young man, I still love you to the moon and back. Nothing will ever, ever change that son!

When dad and I had to leave to Iowa for that five day trip to move all of our belongings, when you were a little boy, you got really scared, as we had never been away from each other for so long. I sat you on my lap and I told you that we would be sleeping under the same moon and the same stars, so that means our hearts would never be far from each other. Now, I am having to take comfort in those words myself. The words don't sound so convincing to me... I hope that they did for you son. I don't get to say my good nights to you anymore. I miss that son. I miss you. I count the days.... always counting the days to see you again. My heart misses you sO very much.

Today was Father's Day. Tomorrow is sis's birthday. The celebrations aren't nearly as fulfilling without you here to enjoy them with us. But, we keep going.

We miss you son.... and we love you, to the moon and back buddy.... to the moon and back!

A great read on high functioning Aspergers Autism

I was just sitting here reading this. I thought that it was a brilliant article. Hope this enlightens you as well.

Article on high functioning Autism Aspergers

Taylor's Donation Fund If You Would Like To Help

Many people have asked how they can help since they live so far away and can't participate in any of the fund raising efforts. This is how you could help if you chose too. Also your prayers and your comments left for Taylor on the blog brighten his day.

Today is Father's Day!!! Wishing our Taylor was here!

Today is Father's Day. Holidays are bittersweet. Hoping in the future, Taylor will be in a good enough place personally that he will be able to get out of holidays, but for now, that is not something that is allowed.

We are getting ready to go to brunch at Marie Calendars. I really don't want to go. I really want to just stay at home and to be honest, I would really like to stay in bed and just stay there with no obligations at all. But, I won't. I will get up, and be a mommy to Carlie and Amanda to the best of my ability, and a wife to Gordon also to the best of my ability.

We are so lucky that we were able to see Taylor yesterday. We did not tell him it was Father's Day today, as it is so hard for him to know when he misses out on things. Amanda's birthday is also tomorrow, and it would be harder for him knowing he was missing out on two things, not just one. I know Amanda is going to take it hard.

For now, we get up and we get ready to go. We send our morning prayers for Taylor to feel blessed today and surrounded by Jesus Christ's love, and know that he is a Child of God through all of this confusion.

Happy Father's Day to all and thanks for your support.

Happy Father's Day to my dad and my father in law Eddie....

Most of all Happy Father's Day to my husband is who is the best dad to his kids. Thanks for loving them with all your heart and always wanting to be there for them, and wanting what is best for them.

Autism tip of a the day. You can't joke around as much with kids, often times with Autism/Asperger's syndrome. They will take you quite literally many times. If you say, I am so mad, I could just spit, and things of such, they take it in the wrong way. You know how people will get angry or joke in teen years and say, I can't believe that you told him I like him, I will kill you (not good verbage), however, Taylor would avoid that person for sure as he would be afraid of harm or violence.

Saturday, June 14, 2008

Good Bye To Auntie Terrie

We went to see Taylor today. We went with Terrie, and Amanda and Spencer were able to come with us also, so it was the whole family.

It was wonderful to see Taylor. They let us through one set of doors, and if you look down the hall, you can see another set with a small window in it. There we saw Taylor standing. Carlie, when she sees him in the small window always squeals and gets excited. It is wonderful to watch her excitement as much as it is to see how happy he is to see her.

Today was a hard day. We were there to obviously see Taylor, but Terrie is about to move back to Los Angeles to be near her family and further her education. We met Terrie through my husband's job at the college. She soon just captured our hearts with her love of people and her sweet and gentle soul. She is Carlie's God Mother, but she is more than that, she is Ohana. She is family. We did not want her to leave and Taylor not be able to say good bye. Remember, he doesn't communicate well, so, his good bye can be harder for him than ours.

We took a picnic lunch and Auntie Terrie made shrimp tempura which is one of Taylor's favorites, along with ours also. We took turkey wraps and fried chicken, a couple salads, and chips. We took soda. Taylor didn't eat a thing. He said his throat hurt. He slept in the sun a lot! Carlie was by his side.

Before the picnic, we were able to go to the gym to play for a bit. Usually he has such a wonderful time there, yet today, he opened a door for fresh air and just sat at the door. Auntie Terrie went and sat by him. It was good....

We decided it was good for us to leave somewhat early as he was so tired and I think that he was running a fever. We had to get some family photos first of all, and so we did. He was patient as you could tell that he would rather be doing other things.

Then, we sat at a table and had to talk to him about Auntie Terrie and this being her last time to see him before she moves. It was heart breaking. He started crying, but would not look at her too much. I told him how it was so okay to cry. I told him when it came to times like this, it is also okay to tell people how they feel. He didn't talk too much, but he did turn to her, and I am not too sure if they even made eye contact, but, he said, I will miss you. My heart hurt for him. My heart hurt for her. My heart hurt for me! He said good bye to her on the unit again.

I am so glad that he had that chance to say good bye to her today. I am so glad he cried and felt some emotion, but I am so proud he could verbalize he would miss her.

Auntie Terrie, we love you, forever. I thank you for being a part of our family and I appreciate you being a part of Taylor's life as well as the girls! Ohana! Family!

Autism tip of the day! When there is a melt down or a fit thrown, it can be from something several hours, and even days before. There are times that they internalize things and they don't know how to react to them at the moment so it takes time for the feelings to come out.

Friday, June 13, 2008

Concepts of time and money

Taylor has no concept of time or money. Plain simple, no other words for it. It can be in terms of months, weeks, days, or simply, five minutes. He can say, how many minutes can I play this game? We will give him a time limit of let's say 30 minutes. When 30 minutes is up, he simply will not believe that 30 minutes has gone by and has a melt down over the fact it is time to stop playing the game. It is odd. He can look at the clock and it will clearly tell him that it is factual, yet, he still does not believe it.

As for money. $1 and $1,000,000 are the same. The one million dollars does not have a significant value to it. One time this last fall, he took out his savings of $1,200 and he spent it on his friends within two days. Pretty incredible. His friends took advantage of him. After doing so, Taylor had done this on a run away spree, he had gotten in a bike wreck with these friends. He was pretty torn up and bloody, the friends left him downtown as Taylor didn't have enough money to ride the bus back to their house. (This is the same house where the parents were harboring him). He walked about 5 miles to his sister's apartment. He hadn't eaten since breakfast, it was now 1am. He hadn't taken his meds in a couple of days. Things were not good. He had bought them hoodies, video games, jeans. He didn't buy himself one single thing. That is someone preying on his disability. It was not considered theft of course, as Taylor willingly bought it for them. It was just so sad. We live in a middle class neighborhood. We have a nice home we work hard for. If you ask Taylor how much our house payments are, he will say, $5 or $150. There is just no value of the dollar for him.

If we talk directions however, Taylor could be rented out as a GPS tracking device. When Amanda Taylor and I drove to Iowa to live, he was busy in the back playing game boy. Yet, months later when we had to drive back home, to plan the wedding. Taylor could tell us every turn to take from Iowa to Spokane Washington. His mind is like a trap with directions.

Autism Tip of the Day! A lot of times Autistic kids have issues with sleep patterns. They may be awake when others in your home sleep. Due to this they may wander, some staying in the house and leaving the house. It is very important at a young age, to let your child know about his/her disability and be able to communicate to the police that they have autism. We have our son telling police, if he is out, His name and that he has autism which is a form of autism. He knows his dad's cell number by heart, but can't remember our home phone number or address. He can direct you how to get to our house, but can't memorize our address. Also in the sleep patterns, a lot of kids with autism will have night terrors, and yell and scream in their sleep.

Thursday, June 12, 2008

There are some people that I want to thank in helping our son....

We were recently transitioned out of Keizer health (Our HMO) for Taylor's disabilities, and counseling. We met with a Dr. Julie and Dr. Rick Bingham. They really didn't get a lot of chances to help or counsel Taylor since when we would go in every two weeks to a month, we would be in crisis. They were more like having to pick up the pieces rather than coaching him into skills. However, they were able to get us in touch with Marion County, and a program called New Solutions. From there things have gone so much easier.

Our first interaction with a Mr. Alvarez. He did the in-take questions on Taylor to get us into the right area. Within a week or so we were contacted by a woman named Sue, and she was amazing. For a mom, running on empty since fall, but continuing to run for the safety and well being of my child, she was exactly what I needed. She was a take charge, this is the steps we need to take kind of gal. It was like she was my manual and I had something to go by. She gave me suggestions to help Taylor with this program or that. She also got me in touch with Tami, who works for Marion county and she is like and advocate for our kids with Asperger's. Although doctors may know the research on Aspergers, they, to be honest, are sometimes very far from being experts when you are the person living with Asperger's and autism. Tami also has a son with Asperger's so that makes it very helpful for us that she knows exactly what we are going through. The funny thing is, for over two years of people knowing that Taylor has Asperger's, Dr. Julie Bingham is the first to tell us about this program. I am getting off track now. Going back to Sue.... she has a very business like approach and appearance, and the first thing that ran through my head was .... Holy Hatties... here we go again, someone that is going to listen and only get half of my story, and this is my son's future. I was so pleasantly surprised. She was so kind and for once in my life, I felt like she listened, and she really *GOT IT*! A new person is now being put on our case, and her name is Daniel. She is very kind and very sweet. She calls to check up on how Taylor is doing. Each of the women at New Solutions seems genuinely interested in Taylor's well being, but go beyond that as they know it affects the whole family. They ask about how we as a family are doing and it is so touching.

At the hospital, his counselor Jessie has become Taylor's voice to us. She is a kind lady and I think that Taylor has connected well with her. They work more one on one with their counselors and staff and only see the doctor for med changes. With this in mind, there are quite a few staff members at the Parry House that Taylor has connected with. Felicia is one of them, and Megan is another. I know that there is the name Nate, but I don't get to hear all of the names of the counselors, as there are so many. I just am grateful for the attention and care you are giving my son while he is away from our home.

I can not leave out a lady named Kim at DD services. She has worked rapidly when getting paperwork on our son since he is rapidly approaching 18. I appreciate the attention and care that you have given our case.

Raymond Tuttle is yet another person that has helped get Taylor on some paths that he would not have been on. It was playing phone tag for a bit since he is such a busy man, but we appreciate him knowing it went beyond Taylor's control at times.

I know that through Taylor's life we will have many more to thank, and the list will grow. For now, I want those people recognized.

Also, Taylor's Kindergarten teacher Ms. Aspas always showed so much attention and love for Taylor. He still mentions her.... as well as Mr. Nimo who helped him in Albany.

Asperger's Tip of the Day: People that have Asperger's often are considered heartless at times. They don't have too much sympathy or empathy in situations. It isn't that they are trying this. Their brains just don't understand emotions too much, so if for instance he would run away and we would be up all night worrying about him, he couldn't understand what the big deal was. He was going to come back, so why be so upset? They don't understand it. Every so often we can see him trying to relate to something. Our neighbors dog was lost, and he got frantic, as he really loves his dog, and he really seemed to understand their emotion, but that is far and few between!

Wednesday, June 11, 2008

My brother has become my inspiration

My 20th birthday is approaching in only days, and though I am still young, I've realized that I need to steadily begin to look into career options. For years, I have wanted to do hair, and work in swanky little salons. It just seemed so glamorous. However, with the obstacles that my family and I have faced with Taylor..I have realized that hair isn't good enough. I always liked the thought of making someone feel beautiful when they walked out of my salon, but I would much rather make someone feel beautiful on the inside. I have decided that I want to dedicate my life to children with special needs and emotional issues. I want to make each and every one of these children feel loved. When I die, I want to be able to look back and remember all of the people who's heart I was able to heal, not the ones who I gave a trim to, and applied highlights. I want to mentor, and talk and listen. I want to hold hands that haven't been held and dry tears that run down little cheeks. But I don't want to limit myself to just special needs. I also want to help those that have been sexually assaulted and raped. I want to educate these girls on how to feel productive and beautiful in non-destructive ways, and I want to help them get back on their feet without the agony of feeling like it's their fault. All in all, I am going to help and touch as many lives as I can. And I have Taylor to thank for all of it. He is forever my brother and forever my inspiration, and because of him, I am determined to change the lives of millions.

Should people be able to harbor a runaway with special needs?

I know that there are some teens that run away because there are many issues at home. Some kids are not safe. I understand that. However, if a teen runs away due to having special needs and not being able to communicate, should the parents of the home that the teen runs to be able to just continue harboring them? That is a question you should ask yourself. If the parents have a family that are constantly drinking in the home beyond a glass of wine, but where they are drunk, or they have drugs in their home. Is that acceptable?

This is what was happening to our teen, with Autism. When he was unable to communicate well, his defense was to run... and he was running to homes (2) with little to no supervision. We went to the parents, and we spoke to them by phone and in person. We told them the situation at hand and told them that our son was special needs and that he needed to be at home. When we would go to their home to return our son and bring him home, there would be lies that he was not there. The parents many times would not be home and there would be 20 kids or more outside playing and causing hell on the neighborhood. Sometimes the parents would just be getting out of bed... sometimes drunk, sometimes high. They told Taylor to tell the police that he was beaten at home, and the police would not make him go home. So, Taylor did. We had countless interviews with the police and it was discovered that no, we don't beat our son. In fact, the police told us to restrain our son at all lengths to keep him from leaving. We disagreed. To even hold Taylor's arm from walking away would be considered or mistaken by him as an attack. Someone would surely be hurt off of what the officers advice was. We were ordered off of the properties of the people that were harboring our son and told never to come back again. We followed those words so we would not be breaking the law. Our only recourse the police told us was to each time Taylor ran away, call the parents tell them to return him and then call the police. We once again complied. Many times the police would not even come to help. They said Taylor was just running a game. The had told us that it is not against the law to runaway but it is against the law to interfere with parental rights. We were to call them each and every time Taylor ran away. Again, many times they refused to go there. We explained to them about the danger he was in in those homes. With autism, he was at risk to the influence of drugs and alcohol and that is what was in those homes. They said that they would arrest the parents the next time they had Taylor in their home. They caught him an additional three times for sure by searching the home or threatening the mother, yet, still no arrests to her or the father, of either homes.

When Taylor would run away we would go door to door in the neighborhood with a photo of our son. We would tell the people he was autistic and we needed them to be our eyes and ears to find our son when he would run as he would surely be in that neighborhood. Each and every neighbor told us, get your son away from those kids, they are no good. They even were leaving death threats (the kids) on one of the neighbors doors, but they couldn't prove it was those kids as they did not see them put it on the door. It was HELL working with the police. Here we are trying to follow the laws, when you really want to tell them what you think and go to their door, but we tried to do what was right.

Now, through the media, we have found out that one of the homes had a father that was a sexual abuser. FANTASTIC. He had been on record for years so they police knew this when they pulled up to their house and we were standing there.

We have to establish laws for runaways and the people that harbor them. We especially have to do so for children with disabilities. They don't understand life like a normal teen. The answer is also not sending them to a drug and alcohol hospital. That is not what is wrong with the kids.

Please help pass the laws that we need.

Tuesday, June 10, 2008

Officially Today

Today was a feel sorry for myself day.... or more of a feel sorry for my son day. Today is official. He has been officially diagnosed as disabled. I have such mixed emotions about it. When the call came, I felt numb.

This will get the services he needs to stay safe. Without it, he could have ended up in a road leading nowhere as he isn't capable of taking care of himself properly and keeping himself safe and out of harms way. So this is good news.

Disabled, also a bitter word in my mouth for my son and his future. I would rather think of it as Delayed able... if there were such a thing. However, we will go with it...

It is funny how my mind races when in stressful times like this. When I was pregnant with Taylor, I worked at a place called Swackhammer's. It was a family restaurant and at night it was a night club. One of the bartender's there, Thomas, was expecting a baby at the same time I was expecting Taylor. We were within a couple of months of each other. He and his wife, Melody, were due before I was.

One night Simon (Thomas's best friend and a fellow bar tender there) came in and said Thomas was not going to be at work that day, that he was at the hospital and they were having their baby. All night long, we took turns running to the pay phone in the back making the calls to the hospital to see if they baby had been born. Finally at the end of our shift, past 2:30am in the morning we found out they had a baby girl. Simon was connected to Thomas. Thomas told him that the baby was not going to live. She was born with major birth defects and they thought that she would maybe make it a week or so being on machines. She was in pain, so they parents had to choose whether to disconnect her from the machines, and hold her until she passed, or keep her hooked up and be with her that week or so. They chose to disconnect. They held their baby for those few hours and she passed away in their arms. They named her. They talked to her and cooed at her... but mostly they cried. I felt so guilty... he had to come to work and see me pregnant when he just lost his beautiful baby girl. It was so sad. They came to my baby shower. I felt horrible. They were strong.

I sit and I feel blessed. Here is my son. God, where would I be if I would have lost him at birth? He has taught me so much. I love him so much. He is a part of me. No matter what his disability is, it is better than what happened to Thomas and Melody's baby girl. I have been blessed with this son. He might have issues, but who doesn't?

In no way am I saying that this is easy, but this is so much better than what it can be. I can't imagine if Taylor's autism was so severe that I would never hear the word *mom*, or more common for him *mama* out of his mouth.

He teaches me to be unselfish. Today as I was talking to him about great days ahead so we could picnic with him on the weekend, I asked what he wanted me to bring for the picnic. This is a boy who loves his mom's cooking, and says the food there is horrible (doubtful) and his response is... don't worry about me mom, anything will be fine. Me, if I were without my favorite things, there would be a huge list.

Just was thinking about my son and needed to journal this....

Yesterday we had a run away scare...

Yesterday I was at home feeling not too good from some tests that I am going through due to some stomach issues. I was in bed, and I got a call. I saw that it was from the hospital that our son is staying at. I was so happy I was going to get to talk to him, yet, I was in for a shock.

The counselor on the other end introduced herself and said that Taylor was a runaway from the hospital. My HEART SUNK! I am about 70 or so miles from there, so I couldn't run outside and just look for him. She said that he had been in a good place all morning, but when he had gone to school there on the grounds, someone or something and had made him mad and he ran out of the building. My heart just hurt. The hospital is in an area that isn't really a bad area, but it is very unfamiliar to us since we don't live there and that scared us a lot. There is also a high school near by and there are always kids out there so I was afraid if Taylor would run to one of them that would happen to be in the wrong crowd. I was afraid he would be hit by a car, as it is on a very busy street. I was afraid, as it was cold and he had no coat on. I immediately called my husband, and we were just in pure shock! We were helpless to say the least!!! They had called the police and they were there scouring the area. I started thinking and called them back. Taylor will hide under bushes if he is afraid... they needed to know that. I relayed that message.
About an hour or so later, the call came in that they had found Taylor. He was on the property, down at his garden on site. That made me feel such a relief. They were trying to talk him back to the unit. They promised to have him call me when he reached there. Not too long afterwards, the call came in. It was Taylor, and you could hear the disappointment in his voice. I told him that we had been so worried. In his mind, there was nothing wrong with what he had done as he had stayed on campus. He doesn't understand the worry or concern. I told him that I hoped he could get to the place where he could talk about things like that with the staff instead of running. I told him how PROUD I was to have him make such a good choice of not leaving campus as that would have been so dangerous. He was just speaking to me in Uh-huh, and uh-uh answers. What had lead him to his meltdown was there was a stereo in the classroom. He was either trying to adjust the volume or the channel and the worker told him it was not his to touch, and that he needed to ask permission. He took the cue wrong (very normal for him or Asperger's kids) and saw it as a threat or a challenge. Instead of posturing, which he does from time to time.... he just decided to run!

Which, leads me to the Autism Tip of the Day: We need to pass laws and insist that our police force take educational training on people with disorders. We have had to deal with the police on many occasions when Taylor is a run away. Many of them get very cocky with a very know it all attitude on troubled teens. My son is not a troubled teen, he is a young man with a disability. I am not saying this for my son's protection but for anyone's protection that has a disability. We have had parenting lectures again and again from the police, which might work on a normal child without disabilities, but they don't work on someone with autism. We have been told to hold our son down with physical force, which will get the situation so out of control that someone would get hurt. They need to know facts about disorders and not give out poor information for people that don't have the resources to find the answers. They need to be equipped with support in the area for disabilities. We, believe it or not, had one officer tell us that Taylor is always so nice and such a good kid, he just didn't understand it.... DUH!!!! You don't live with it, you haven't been trained. He went on to tell us that he almost tased Taylor with a Taser Gun to *TEACH HIM A LESSON*! Is this serving and protecting the community or is this being an ASS? We have had one tell us that Gordon must be the step dad and this is the reason for the outburst. We have had them tell us to put him into a hospital that they saw a lot of success rate.... it was a drug and alcohol hospital. It is so ridiculous the info they have. Again that hospital may be good for a kid on drugs or alcohol, but put Taylor in a not good place. We, the community must make sure that people with disabilities are being treated as so. We, the parents of these young people with disabilities must also teach our kids that they need to tell the officers their name, their telephone number and that they have Asperger's which is a form of Autism, otherwise the police won't know.

On the flip side, we have had three of four officers returning Taylor from run away status that are very kind and really tried diligently.

Tomorrow's subject is also about laws of harboring a runaway, and what we as a community needs to do about that, especially when the runaway has a disability.

Monday, June 9, 2008

Obsessions and phobias with autism

Obsessions, we all have them in one fashion or another! Some of us more than others. Many times they don't compare to an obsession that someone with autism has! They get fixated on specific items, and they have a very difficult time breaking away from it. This is different than what their gift is... but sometimes they do seem to intermingle a bit.

For our son, his obsessions are several things. Remember he is almost 18, but his mind is not that of 18. He loves pokemon cards. It is fascinating to me as the creator of these also has Asperger's Syndrome. He also loves match box cars and must have over 600 of them or so. He also loves to play video games. This is also one of his talents however. He can master a game within days of buying the new game. He really likes transformers and also bionicles from Legos? He likes magnetic links that link together also.

As for phobias. He is REALLY afraid of the dark. He hates the dark. Even when he was running away, he would tell his sister that he would stay in very well lit areas. He always has been afraid. He also is fearful of needles. I am also, but not to the extent that Taylor is. I remember when he was like four, we went to get a shot. I would always have to hold him in my lap as he would get the shot to try to calm him down. With that in mind, the doctor had taken him off of my lap to go pick out a band aid. They had spiderman, and different animations. The doctor thought this was a good idea to get him mind off of things. As the doctor went to the cupboard to get the band aid of choice, we were chatting, and Taylor opened the door and was running out the building. Very scary at the time as the office was on a busy street, but, as years pass, we still get a lot of chuckles from that one.

Taylor loves the pool or anywhere that he is able to swim. He can be in there for hours and not even have a thought to get out. It is very amusing! He isn't really too strong of a swimmer, but he can hold his own. I can honestly say, when he is in water, he is happy. It has always been that way. Now, taking a shower is another story. We have to constantly remind him to shower. It isn't that he doesn't want to really, just that he gets side tracked and we have to keep telling him. Once he is in there, he won't get out. He loves water, once again.

Autism tip of the day: Often times kids that have Aspergers really don't think about how others will view them. With that in mind, they might want to wear the same clothes day in and day out, no matter how many clothes you buy them. Their hair is often unkept and many times their clothes can be wrinkly or not really match well, or not match the elements. It isn't really that they don't care what others might think, it just really never crosses their mind.

Please forward this site to everyone you know....

We are keeping a list of where people are visiting the site from and telling Taylor when we we him. He knows we have a site for autism and it excites him that we are trying to educate people with tips of the day about autism, so people will more readily recognize it when they see it. Thank you!

Sunday, June 8, 2008

Why I want to take Taylor to Disneyland

The last time we were in Disneyland, I was 10-years-old, and Taylor was about 7. Of course we were both excited. As soon as we entered the gates, Taylor kind of squealed, and I expected him to run right in and go to the first ride he could find, but surprisingly enough, i remember feeling his little hand grab mine and getting a little sqeeze. It's like he wanted me to be by his side the entire time. Taylor loved the Swiss Family Robinson tree house, and the Pirates of the Caribbean ride. They were such a boyish adventure for him. We searched for Mikey so that he could shake the hands of this little boy that loved him so much. He was laughing and pointing at all of the details that only he could notice. I wanted to go on the Haunted Mansion ride, and he was so scared, but he did it to stay with me. He went on it just for me. He held on to my leg, and put his head on my shoulder, but he was the bravest of boys in there. Our time there was full of Taylor smiles. I haven't seen those smiles for years.
So before Taylor has to go to a more permanent home in October, I want to be able to take him and my family to Disneyland one more time. That is all he wanted when we asked him if he wanted to anything before having to go. And now that we have Spencer in our lives, he won't go unless he is with us, so I have a little more fund-raising to do than I had planned origionally. Taylor has been sad for so many years; I want to see that Disney smile just one more time. I want to be able to put him on all of those rides, and take him to see the pirates. I want to stay for the fireworks, and have Mikey shake his hands that are now the hands of a young man. I want to try to walk in the parade and show all the happy people the brother I am so proud of and love so much. More than anything, I want Taylor to have one more happy memory before he has to go away. I want him to see how much I love him, and how much dreams really can come true. Just like Walt Disney had that *Dream* and look where that dream took him! Thank you to all who have done your part in buying my baked goods, and giving us donations. You are such a big part in helping me grant this wish...and thank you to all of those who read this. Sometimes just knowing that people are hearing Taylor's story is enough of a dream come true. Please continue buying so I can give him the wish of a lifetime. It is one time in his life, he can be Taylor and not worry about people bullying him or taunting him, but just really be there to have fun. Take a look at my brother. How could I say no to a face like that? ~ Thanks, Amanda

A thanks to our parents....

I was up most of the night in bed last night and I continued to think again and again, of things that are GREAT in Taylor's life. I just kept coming back to family. I kept coming back to he has SO many people who love him, between Aunties and Uncles, cousins, & Grandparents.

My mind drifted back to when I was pregnant with my first child, Amanda. I was living in Hawaii at the time and my ex-husband was out in the field with the Army. My mom and I were on the phone just talking girl talk and the excitement I had for my first child, and my mom her first grandchild. I remember this conversation like it was yesterday. I told her that there could be nothing wrong with the baby as I did not think that I could handle being the mother of a child with special needs. She told me that of course I could... you just do it and love them like any other child as you are the one that carried them in your womb, and they are your baby. Amanda came out without any issues (other than being stubborn *somewhat like her mom*). So here I am over 20 years later, going back on that conversation and I am shameful. Here I am, a mom of a child, not even a child, a young man, with a disability. I love him as much as Amanda, and I love him as much as Carlie. I feel really bad for him, as I feel like I have let him down. I feel like he deserves a better mom. Logically I know that is not true, and that I have tried everything in my power, but that is how my heart feels.

Back to our parents... I am so glad that Gordon's parents raised him to be a good man. I am so glad that I found a good dad for our kids. It sounds very odd, but I am so glad that Taylor's biological father has chosen to not take an active role in his life. On one hand it stinks because each and every child deserves to know their dad. It doesn't effect Taylor like it does Amanda. Gordy is HER DAD through and through, and anyone ignorant enough not to think so is just that very silly. However, on the other hand, perhaps it does effect Taylor just as much but he just doesn't know how to communicate that frustration. I am not sure. We check in with him often to see if he has any questions about his biological father. The only questions that have come out of him so far, are, 1) Didn't he have a small car like that mom? 2) He was in the military, right? What kind of military? (Meaning which branch) 3) He lives in Texas right? That is really close to Mexico, right? And last, but not least... 4) His hair was really thick like mine wasn't it mom? That is it. I really do believe that in my heart, God does know our outcome far before we do and it is in HIS plans. I know that Gordy was brought to us by God to father my kids, which he does so well. That comes from his upbringing, and learning to be a man of honor and kindness. Our kids are great kids and many lessons that they have learned are from Gordy, and they deserve the best dad, and they have gotten that from him. In the same token, Gordy deserves great kids that would also teach him and love him unconditionally and our kids do that. They are proud of their dad, and he is proud of them.

My parents, I need to thank for showing me persistence. I think that it worries them when I cry a lot or get really upset, or discouraged with the situations that we face with this disability. They have no more answers than we do. Sometimes, what they don't understand is I don't need an answer or a fix it, I just need an ear to listen to me. They do very much, but, naturally being a parent they want to help fix my issue. I know they can't do that as much as they know. However, it is in their hearts trying to protect me. In reality telling me not to cry, or be upset is like saying don't breathe, or don't blink. It happens naturally and that is just how it is. What I want them to know, is I will be ok. Taylor will be ok. We will get through this. It is harder than anyone will know that hasn't gone through it, but I will be ok. They have taught me to be a strong person, and I think that being stubborn also helps a bit. It doesn't mean I am not going to go through depression or sadness, or that my heart won't break in a million pieces. What it does mean is that I have Faith that God will guide me through this and help me put the million pieces back together again.

I remember when my youngest sister left for college. I called my mom from work to make sure that she was okay. She was so sad and weepy on the phone. She really had a broken heart for that time. It was hard. It was her last, her baby, and now she was gone. It is similar to that. Although Taylor is not my last, he is still also my baby... and especially since he was born with this disorder. The difference is, my sister (who I love a lot) was leaving to become more successful as a person. She was going to college. She was going to get a better education from a great college. My son, is going to have a group of team meet his needs as he is high needs. He is not going to get an education but perhaps some training to read social cues, and learn how to somewhat be able to function on his own. I worry people will take advantage of him. I worry, and this is a BIG ONE, he won't need me anymore. I still don't know if he thinks I am abandoning him. It is similar in ways but so different in ways, and ways that words will never begin to describe, EVER.

My mom and dad both went through many different things in their growing up that have made them who they are. They had hardships and trials and they came out okay, and we will also. We teach our children strength weather we believe so or not, through daily living.

So, thanks everyone, that has helped form us into the people that we are. No matter how bad it gets, we, as a family will make it! We will!

Asperger's Syndrome Tip of the Day: Someone with Asperger's doesn't know how to read social cues. They don't know people's space or limits. They can't read body language well, if at all. Sometimes they don't understand social elements either, such as in a basketball game where guys smack each other's rear ends, to him, they were either trying to hurt him, or wanting to pick a fight.