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I am so excited. I know that I will get to see Taylor tonight when my husband brings him home. That is always a day I look forward to during the week. I think that our daughter Amanda and her boyfriend are going to take him to the fair this weekend on Saturday. I am sure he will love that.
I have a lot of jerky to sell this weekend. My friend Sandie is helping us. I also need to figure out a place that we will be selling the Krispy Kreme Doughnuts. We will do that in September....
On my way out the door for work now.... blessings to all...
Another day of horrible outbursts for Taylor. It just breaks my heart. He was doing so well. Each night at about this same time, he is having really bad outbursts at the center. This is the fourth night this week. This terrifies me. I am not sure if it is his medications or if it is the fact that his therapist has gone to a new job, or C) none of the above. All I know is that Taylor is regressing and this is not a good thing. I didn't sleep one wink last night, just sitting up worrying about him.
I am not sure if he will be able to come home tomorrow or not. I was looking forward to seeing him. I just wish I could understand, if for only one second, how his brain thinks. It is terrifying to me. I want to protect him from things that are going to hurt him. I want to protect him from himself. Just when he seems to have most of the rage under control, he regresses.
They say it is at the same time of night each night, so perhaps it has to do with meds. I am not sure what it is, but I just know I am him mom and I want nothing other than for him to be ok.
Tomorrow is a block party in our neighborhood. It is hard for me as this is the first one without Taylor being home for it. He REALLY enjoys the block parties. So, as I sit here and try to figure out what I am going to bring to the party, I started thinking about what a blessing it is to live in the neighborhood that we do. We were very lucky to find such a kind set of neighbors, not really one set in particular but like five or six sets of neighbors.
Taylor loves going out and talking to all the neighbors. Especially when he gets to come home for the weekends. He likes to make his grand entrance to go see them all. It is usually one of the first things he does when he pulls into the driveway. It makes me smile. Even during the darkest times, not one of them gave us stares or dirty looks when Taylor was having his melt downs screaming and swearing at us. A couple of instances really touch my heart with the neighbors. One night Tay had run away from us. He ended up being in the street late at night and was smashing rocks to get his frustrations out. One of our neighbors, Don, came out to just talk to Taylor. He and Taylor have this connection and he listens to Don. The police were called as Taylor's behavior had them worried (can't blame them). The police was very rude to my husband and it was a mess. The police don't know what they are talking about when it comes to autism, that is just the long and short of it. So, there was Don, trying to pick up the pieces with us. I was so impressed. Taylor also loves the other men in the neighborhood, Lee, Trent and last but certainly not least, Joe. Joe's wife is the other one that has a lasting memory in my mind. On one of the first *all night* runaways, we had the police over yet again, making out a report. It was so awful. Your stomach just hurts when all of this is going on. Anyhow, we had police in our back yard looking for Tay with lights and it was just horrifying that at that moment, that was our life. How did our life get like that? Thoughts just kept racing through my head. We were checking out under the deck in the back and our neighbor, Mavis came out and asked if we were okay. I told her Taylor had run. I felt so awkward saying it, but there it was, out on the table. It was like an open wound for all to see. I expected her to go inside, yet there she stood in her house coat, calling Taylor's name. You know your heart, when you are ready to cry, how it all starts feeling warm, and you can't control it, that is what I felt. More recently, after Taylor had already left for the Parry Center, we had a garage sale. Don's wife Bonnie came over and not only did she buy things from us, but she also gave us a donation to help Taylor get to Disneyland. Lee across the street, he took Taylor to school each morning, even after his son stopped riding with them and started riding the bus. His wife Elizabeth has come over umpteen times to cheer me when all seems hopeless for that moment. I also remember going to Trent and Carrie's house across the street one night in deep desperation for help. Carry works with kids that are autistic, but more kids that are non verbal. I needed resources. She did so much leg work and came to my home a couple of days later with a list of contacts.
We are very blessed to live in the neighborhood we do live in. We live with people that really care about each other and lift each other when they are in need. I am so lucky that they are in our lives.
I still don't know what to take tomorrow.
To the moon and back buddy, I love you to the moon and back... mama
I miss you today son! That doesn't change from day to day, however, some days are worse than others.
Tomorrow is our anniversary, and I have been going through my mind, time and time again what a precious and special day that was for our family. It wasn't just about dad and I, but it was about all of us coming together as a unit. Man we lucked out when we found dad didn't we.
My mind jumps from moment to moment of that day. You playing basketball in your tux, sis hating to wear her shoes; all of our family together including both mom and dad's siblings and parents, aunties and uncles. I just keep thinking back to when we had lit the unity candle, and the music was playing. It seemed like forever. We looked over at you and you were just crying. My heart just filled with so much love for you. You were so excited to be getting a great dad. You were such a little man, but this really touched your heart, which in return made dad and I both start crying, and sis, and Kim.
Tomorrow we will celebrate our union together. This is a union of man and wife, but also a union of our unconditional love for our children. Wish you were here for me to give a big hug to. We will be seeing you soon, but until then buddy, to the moon and back. I love you to the moon and back~
Mom!
Uncle Bernie also wrote today. I shared with him and Uncle Ryan the incident that happened the other day. He was so proud of you son! You are so lucky to have such neat people in your life that support you in your efforts to be the best person you can be. It made me cry reading Uncle Bernie's words. They love you too son.
This song sums it up for the way I feel for not only my wonderful and handsome son, but my devoted husband, and my two beautiful daughters. This song is sung by Israel Kamakawiwo'ole
I think that with life, it is so easy to simply throw ourselves away. I think that it is easy to set expectations that are too high for ourselves and when we don't reach those expectations, we throw away our feelings and desires as if we are a piece of trash or a piece of garbage. I feel like we need to take to heart that WE ARE WORTH IT, just because.
This really doesn't have anything to do with me, but in reality it has to do with all of us. I believe that at times we just lose ourselves. I feel like the outside world puts little labels to us, just as I label my blogs... and we take those labels to heart. We try to pretend that they don't hurt our feelings but we know, deep down it does.
I think of my kids in these situations. We want to protect them from all of that, and especially when they are disabled. I feel that Taylor has just lost faith in himself at times. I feel that with all of the kids and I try to always teach them they can do what they put their minds to. I guess with autism, it is hard to connect the pieces anyway, so does he really understand what I am saying?
I want to lead by example for my kids. I am going to try to not worry about what others think of me. I will make all of my dreams come true. Most of them have, just by having them in my life. Yet, there are always dreams we have for ourselves.
I will not let others let me throw myself away, and I will not let others accomplish that by letting my kids feel like they are thrown away.
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.
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.
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.
Jamaica
Hungary
South Africa
United States
Brazil
Spain
Canada
Philippines
United Kingdom
Singapore
Malaysia
France
Japan
Mexico
Norway
German
Switzerland
Austrailia
Denmark
Taiwan
Saudi Arabia
Bermuda
New Zealand
Belguim
Columbia
Ireland
