We have been building for quite a while.

We are overloaded and tired from all of the excitement, but it has been a very good day. Ariel and Joshua have both had a meltdown…I am working on mine. Just kidding. However, they were short and they bounced back fairly quickly. I am writing to help me have a little down time. Daniel is doing great. At this moment he is playing with his mousetrap game. I used to play mousetrap by myself all the time for hours, my mom even remembered that today and mentioned it. I thought Daniel may like it as much as I did. Actually, David mentioned it and I remembered my playtime with the game. The last few weeks have been both challenging and awesome. We have done things that I was not sure we could ever do. Daniel has been using the potty for “everything” for the past two weeks. We are still working on bedtime, but he has done it!

He is so happy and proud.

He is even refusing to let me help him get his pants on. Big change from refusing to go near the potty unless I was right next to him. He does tell me every time he needs to go, and I have to say: “Ok, Daniel, you can go potty.” He feels that he needs permission for some reason. He does that with his food too, he asks if he can eat whatever it is before he will eat it. The answer has to come from the person who gave it to him otherwise he will not eat it. He will continue to ask over and over again until he feels satisfied with the answer. :-/ Hopefully he will feel at ease eating without asking soon.   It is so wonderful to see how much they have grown and all of the great things they are learning and doing. AND I am so happy that I finally made a cake the way Ariel wanted! I am also so happy that I did not have an anxiety attack, meltdown, or shutdown before the party. I will take it easy and let my body recover. I am pretty fuzzy headed and the Lego’s call. Today is one of the best birthdays we have had.

Birthday pictures! (and the sky ’cause I liked it)

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I had to get up and write that post!

So at 3am I went into the school room on the kids computer, in the dark, eyes barely focused, and wrote out that post. For some reason I had to have it finished before later in the morning or day. I still have no idea why other than I was able to sleep a bit more after 4:30am when I posted it. That was another strange thing, I posted it without really going over it. So what happened? I go back to read it later that morning and see that I called David, my mom and myself “idolators” instead of isolators. In the past I would have had a panic attack at the thought of anyone reading that, this time I laughed. I am still laughing. How funny, idolators.

I think my brain needed to process the information.

The topic of moving has been flying around for over a year now. We had not found a location that was a good fit. Again, going to another city where I do know anyone or have any family at this point would not be a good thing for me. Everything that I wrote about in Big Changes…Possibly, have been concerns for a while and there are still other issues and factors that we are dealing with that I have not written about. In the past week the idea of moving to my hometown has become a real possibility. Actually more than that, we are about 96.8% sure that we will be there this time next year.

I still am not sure how I feel about all of that.

I am not going panic, I am going to process. We will be about three hours away from my dad which is a good distance. Small doses to enjoy him. My grandma lives in my hometown as well so she can help me and go places with me and the kids if I need help. Or she can babysit for me. I am not too sure about other family members, I am not close to many of my family members. Mainly my aunt is the closest, I tend to feel awkward around my grandma too, but I do not feel like talking about my awkward disconnect to family. I am sure I will have a ton to write about when/if we move there. She was planning on moving here, but she has continued to put it off and prolong the whole thing. I could help her get her house ready to sell, that may be one of the issues for her. She has friends and family there also and it may be hard for her to leave. She is quite the social butterfly. Here she would only have my mom and other two sisters. I am just writing anything that is popping in my head so I am stopping on this topic.

Good news!

Daniel pooped on the potty yesterday for the first time!! Sorry for the poop talk, but that is a VERY big deal. He told me on his own that he wanted to and he sat and did it. He was very proud of himself. Another great thing happened yesterday. We were sitting on the couch together, he has started asking me to sit next to him and then he practically sits on me so we are working on boundaries. He wants to sit next to me and talk. HUGE! He was telling me all about his clock as we sat there. He told me all of the things that he likes about it and how he likes helicopters and that the reason that he likes them is because “how they work”. He has never given me a reason like that before, it has always been because “they spin” or “they make noise”. Then, during a moment of pause, he turned to me looked me straight in the eyes and asked: “What do you like mommy?” And then he listened and asked me questions about it. He wasn’t just following a script, he really wanted to know.

It was a great moment.

I have a lot to process in my life right now and as I am processing I do/say things that seem to contradict each other. A major one is working out and baking. I love to do both. I do make some healthy treats, but to be honest I do enjoy making sweet, tasty baking delights that make people smile and get them on a sugar high. Not the kids of course, but other people. I do share the treats with the kids and they get so happy and surprised that they can “have a cookie for a snack!”. I do enjoy making things with the kids. They love to help me and we learn measurements and chemistry in the process. I cannot really think of anything else to write about at the moment. I think I just needed to get some things out so I could process some more things.

I will leave with some photos of some gluten-free delights and who knows what other pictures will show up.

There are some Lego Dragons, school shots, raspberry oatmeal muffins, peanut butter/banana/oatmeal bread (I will not eat! Two things I dislike very much peanut butter and banana.), lemon cookies, granola bars and bread…I think those are the only pictures I put on of food. I tend to bake a lot and not eat any of it. I will freeze them for a later date for when I have a sweet tooth. It’s the process of baking that helps me not the eating it. Besides sweet things are good…in moderation. The same goes for working out. Moderation, right?

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Autism to Me

The light that shines in my darkness.

The answers that healed my heart.

The frustrations of not understanding.

Discovering that my mom and I just misunderstood each other throughout my life.

The joy of being able to have freedom.

The day he finally spoke.

When I scream at the top of my lungs.

The time I danced and leaped because he used finger paint.

The time he flipped out in the store and all the people stared,

I carried him to the car and cried.

The time he flipped out at the checkout,

the cashier and people behind us glared, AND I no longer cared.

The smile that woke me up this morning.

My daily struggle with anxiety.

My very loud laughter when I am not supposed to laugh.

Me laughing with my kids when they are laughing….and they are not supposed to laugh.

Us going out in public in whatever we want to wear!

Me bringing specific foods for each of us so we can participate in society.

Painful feelings of isolation.

Exuberant feelings of relief.

Hours in the bath tub.

Being terrified of the phone.

Having sleepless nights.

Being afraid and not knowing why.

Needing comfort and not knowing how to get it.

Longing to be with people but not know what to say or when to say something.

Not wanting to be around people at all!

Being happy being alone at times.

Seeing things that other people never see.

Saying the things people want to say but never do.

Staring blankly but thinking many things.

A mind that never stops.

Having batteries, fans, typewriters, recorders, and cameras as toys.

Collecting many, many things.

Organizing things.

Dumping things.

Jumping, running, pounding, clanging, pouncing and spinning.

Not wanting a hug but needing one to find calm.

Crying because writing is too hard.

Screaming when shampoo is put on their hair.

Walking out in front of cars because he is so desperate to get away from something.

Listening to hours of talking about fans, Lego’s, animals, games and social situations.

Learning new teaching techniques and therapies, to finally find the ONE.

Realizing that there is no just ONE.

Discovering that people do not think the way I do.

Learning social scripts by writing social stories for my kids.

Anxiety, fear, joy, laughter, pain, goodness, something new almost every day.

My whole life.

Everyday, my past, my present and my future.

At least they taste good. (Pictures below for comparison.)

After the kids were in bed, David and I discussed how it came about that he received the gifts that he did. The kids explained it to him but there were some important observations about how they processed through their ideas. I asked each child what they wanted to get David for his birthday. Here is what they came up with.

Ariel: I want to get Daddy lotion. He has dry hands like me and it will help heal his hands.

Joshua: Lego’s!
Me: Daddy does not want Lego’s. You want Lego’s. What do you want to get for Daddy?
Joshua: A box, like mine for his doctor stuff. So he won’t lose them.

Side note: We got each one of them tackle boxes Joshua and Ariel are using them for their Lego’s and Daniel is using his for his “electronic toys”, so they will not lose them.

Daniel: Lord of the Rings.
Me: I am not sure I can get something LOTR but I will try.

I ended up getting David a game that the family could play together.

I could not find anything LOTR that was not too expensive, besides the day before David received the LOTR Wii game. David and I talked about how each child processed their gift giving idea differently. Ariel and Daniel both made choices about gifts the way I do. I immediately think of a need or something that I know the person likes. The problem is that a lot of people do not want to receive gifts based on their needs. On the other hand people also do not want to have large quantities of things that they like. If I discover that someone likes something I tend to error in my thinking that they would like LARGE quantities of the particular thing.

Or that they would like to be all consumed by it.

All of us in this household want to consume as much information or things that are our interests and we assume others feel the same way. Fortunately, it works for us but unfortunately not so much with others. Sometimes it works out great though, I tend to always be the one with the “odd” gift while others are giving what seems frivolous silly gifts and some people find that refreshing.

As for Joshua he made a gift choice like David would.

He first thought of what he likes, then when he realized that David did not want Lego’s, he applied a principle that he had learned. David purchased an otoscope and a lighted ear wax remover, he has a stethoscope and other “doctor” things in case we need to check things at home to determine if we need to go to the doctor. Joshua thought of those things and realized that David had no place to keep them, just like his Lego’s. Since we told him that he could lose his Lego’s if we didn’t keep them in a storage box, he thought the same thing about regarding David’s stuff.

Kids are so fascinating.
Cake comparisons. I will spare you the years before. Why do I keep making cakes? I really don’t know. It’s become a challenge now.

I am so relieved to have found these papers, I also found some of the journals that I kept of Daniel.

I need these papers to go over and evaluate where he has improved and see what things we should focus on now. Daniel and Ariel are going to have their progress evaluations for school soon and I want to be prepared way ahead of time. I will need these evaluations for Daniel as we sit with the evaluating teacher for homeschool, so I was freaking out that I could not find them. Since I was now able to breathe about that and move on with my preparations, I decided to look through the journals and his first evaluation.

Here are some of the things I had written down:

9/30/07 Daniel had a rough day. He fought me all through breakfast. He got very upset at church and we had to take him outside, he was happier while outside. When we got home he began to throw things and get progressively angry. He got very angry with me during lunch. The rest of the day the same. He can’t talk so I am not sure what upset him. I believe it was some sort of sensory issue but I cannot determine what it was. Pay closer attention next time.

10/05/07 I woke Daniel up today. He sat in the same room with Ariel and Joshua all day. He seemed very happy today. He got fussy at mealtimes but he did touch my arm and legs while I fed him. He had a good day, but was unable to go to sleep, finally fell asleep around 1am. It was a nice day.

10/06/07 Daniel peed all over himself in his sleep and woke up very angry. He got upset with me, Ariel, and Joshua, I am not sure why. He had a bottle in his mouth all day, whenever I tried to take it from him he would get aggressive and scream.

10/07/07 Daniel had a great day. I put on music and we all danced together for quite a while. He had a hard time during meals. Later in the day he sat in his room playing with his gears and a music mirror toys. He was able to go to sleep.

As I went through, there were so many days that I had written that he was in his room alone, he was angry, he was doing self harm, he threw things at me, he got angry at his food. He went through a period of time when he was doing “poo art”all over his bedroom, Ariel’s bedroom and the hallway. We had to feed him nothing but mushy food, covered in cottage cheese or something white. He would only eat white foods. We were not gluten-free at this time and pretty much year after year I have written down something about Daniel being upset during and after meal times. That has changed since we changed our diet.

I have this entry as a general observation 10/21/07:

Daniel mainly plays alone with particular toys, they usually play music or make noise. He is fixated to the point of obsession with ceiling fans and spinning toys. He will turn on every ceiling fan in the house and if we do not have them on he will become very upset.  When we have gone to people’s houses the first thing he does is turn on their ceiling fans and watch them and try to play the on/off game.

He beats on things repeatedly. He makes a game of turning the ceiling fan on/off and then beating on something as it spins from faster to slower. He also does this with turning lights on/off.

He loves music, especially heavy drums. He dances all the time, rocking back and forth.

He will not feed himself or drink from a cup.

He will not eat anything hard or crunchy.

He will not put anything in his mouth, just started to touch mouth with fingers.

11/2007

Does not hug or kiss

Avoids touching certain textures, foods, liquids on the table.

He has a toy or bottle at all times.

Stands still or moves against the traffic in group activities.

Shows little or no reaction to pain.

Shows behavior that seems difficult when its a response to tactile stimuli.

Those were for sensory issues I assume.

I did not label my entries with a title for certain list entries,  I wish I would have done that. He received a label from the OT “Motor Disturbance and Developmental Delay” on January 15, 2008. “Currently Fine Motor Skills, using the HELP, are at the developmental level of : ~24 month old. Daniel was 3 yrs old and 2 months during this evaluation.  Patient’s fine motor delays are partially due to poor attention to task and tactile sensitivities”. She also had a three paragraph description of his sensory issues. His gross motor skills were considered “fair”. After looking at the short-term goals and long-term goals for that year, I am happy that he has achieved them all and beyond.

We did not get to go back for formal progressive evaluations because of our insurance problems.

I did see his OT last year at an autism symposium and most likely will see her this year. She told me to come see her unofficially so she can see for herself how Daniel is doing. I think I will have to plan that, she is an amazing woman and I am so glad that we got her from the beginning. In my post  A Thankful Year I say that I am thankful for learning about the autism spectrum. Many people could misunderstand what I mean by that. I am not thankful for the hard things that Daniel had and does go through, the struggles that Daniel has, my personal struggles and facing my denial and confusion about all of it.

I am thankful that I have information.

I am thankful that there are so many resources and people who have already gone through life learning lessons with autism. I thankful that I can learn, grow, discover ways to help Daniel and the rest of us be able to live in this world better. I am thankful that the knowledge has given me awareness and understanding. I am thankful that I understand about how other people’s experience with autism is different and I can learn something from them or possibly help them understand it differently too.

Daniel has not miraculously stopped everything and now our life is great.

In the past two years Daniel has gotten progressively more verbal and that has changed our world. In the past 6 months his language has increased tremendously and that has made it possible for us to know what Daniel needs, wants, is happy about or angry about. When he is upset he does shut down at times but he is trying to talk when he can tell us. At times I just have to let him go and then go back and try to find a way to help. In Nov. 2009 Daniel was still drinking from a bottle and would not take it out all day except or meals. I wrote about that here The Bottle-My Nemesis!.

Getting rid of the bottle helped him find his voice.

There are just too many things to write about and at times I am too close to see the progress that Daniel has made. When I write about some of these things it helps me to step back and take a big picture look to see everything that is going on. I tend to be happy for a moment at his accomplishments but then jump right to the next thing that we should work on. Finding these papers will help me put things in perspective and actually help me see with clarity. I can’t wait for the day that Daniel can read all of this stuff and see all that he did.

I hope it gives him a sense of accomplishment and understanding that he doesn’t do things the way others do and that he doesn’t have to.

I found an almond cheese but it was crazy $5.00 for a small block!

What if he doesn’t like it? It may seem like it would be worth it to try but seriously I cannot be alright with spending $5 on a block of fake cheese that he may or may not like and I know darn well the rest of us will not so it will go to waste. I did find a recipe to make your own gluten-free, casein-free cheese. I may try it, it is made with hemp milk and tahini. I was thinking that I was crazy about this but just this week twice in a row, I used more milk in our dinner than I usually do. I got so extremely ill that I wasn’t sure what to do. The only difference was that I had more milk in my diet than usual. We didn’t change brands, I didn’t have anything else different in my diet except for the amount of milk. I find this odd because I can eat cheese. I cannot eat a lot of cheese because I get ill with that as well.

Maybe he just has a low tolerance and I gave him too much cheese the other day.

I do know that in order to find out what it really is we have to try to give it to him again. We will have to do low doses and take it from there. The week that he had the problem with the cheese, he ate cottage cheese and block cheese. It could have been just too large of quantities for his body to digest. I do know he cannot drink milk, that always makes him sick. I find this whole thing just odd. He isn’t allergic to it, he was tested for that but he obviously has an intolerance.

After the holidays and after things settle down, we will start our cheese experiment.

Asperger’s

http://www.amazon.com/Asperger-Syndrome-Sensory-Issues-Practical/dp/0967251478/ref=sr_1_2?ie=UTF8&s=books&qid=1253138340&sr=8-2

http://www.amazon.com/Teaching-Raising-Children-Spectrum-Disorders/dp/1932565191/ref=sr_1_2?ie=UTF8&s=books&qid=1253135599&sr=8-2

http://www.amazon.com/Asperger-Syndrome-Difficult-Moments-Practical/dp/1931282706/ref=sr_1_1?ie=UTF8&s=books&qid=1253135666&sr=1-1

Sensory Integration

http://www.amazon.com/Raising-Sensory-Smart-Child-Integration/dp/014303488X/ref=sr_1_2?ie=UTF8&s=books&qid=1253135750&sr=1-2

http://www.amazon.com/Out-Sync-Child-Has-Revised/dp/0399532714/ref=sr_1_2?ie=UTF8&s=books&qid=1253135811&sr=1-2

http://www.amazon.com/Out-Sync-Child-Recognizing-Processing/dp/0399531653/ref=sr_1_1?ie=UTF8&s=books&qid=1253135811&sr=1-1

Nutrition/Gluten-free

I only have a cookbook all the other books I read on gluten free were from the library. Here are a few great links.

http://www.gfcf.com/

http://www.mayoclinic.com/health/gluten-free-diet/DG00063

http://www.celiac.com/

Even if you don’t have celiac disease these are good sites with a lot of info.

http://www.amazon.com/Gluten-Free-Cooking-Dummies/dp/0470178108/ref=sr_1_1?ie=UTF8&s=books&qid=1253136454&sr=1-1

http://www.amazon.com/Family-Nutrition-Book-Everything-Adolescence/dp/B000EHSMKE/ref=sr_1_1?ie=UTF8&s=books&qid=1253136611&sr=1-1

Home school

http://www.amazon.com/Raising-Bookworms-Getting-Pleasure-Empowerment/dp/098158330X/ref=sr_1_1?ie=UTF8&s=books&qid=1253136698&sr=1-1

http://www.amazon.com/Science-Young-Children-Rosalind-Charlesworth/dp/1428375864/ref=sr_1_1?ie=UTF8&s=books&qid=1253137371&sr=1-1

We got the Math & Science for Young Children used, we paid less than half I think we got it on half.com but I can’t remember.

http://www.amazon.com/Words-Their-Way-Vocabulary-Instruction/dp/013223968X/ref=sr_1_1?ie=UTF8&s=books&qid=1253136866&sr=1-1

We got this one used too.

There is no need to buy every book on the market but David and I both have “special interests” (ie. obsession) in teaching our children and anything to do with AS. The best thing to do is check out different books and resources and see which ones best suit you. Every person has a different journey, each AS person and child is different and no one should ever feel obligated to do what other people do. Always seek out things and resources that fit your personality and ways that you learn and teach. Be yourself even when trying to find answers. Onward on our journey!