05/31/10

The Specifics

I realized that for the year that I have been writing about Daniel’s progress I have said things like, he is beginning to dress himself or starting to talk more. The reality of the past several months is that Daniel is now DOING those things. Not just starting to or trying he IS doing it. He is eating foods that he would never have eaten before. He is now speaking to me in sentences that are complete and clear. He has not regressed to whispering in months. He is telling me about what he is doing. He is asking me if he can play with a specific toy. He is telling me if Ariel or Joshua have done something to upset him. He is listening to me when we go places, like the beach or the store. I don’t have to chase him. He doesn’t run into the street anymore, he looks both ways for cars. He tells me he loves me because he wants to and he means it. He has conversations with Ariel and Joshua as well as David and myself. He tells me what he likes best.

There are just so many things that he now does that seemed so far away.

As I wrote about his progress in the past and the moments of being happy with those things, I didn’t realize that a year later I would be writing what those things transpired into. I had hoped and prayed but it all seemed to unreal, unattainable. I was happy with him pulling me places to show me what he wanted, though exhausted and wishing he would use his words, I was still happy and so thankful for that. I was so happy when he finally gave up the bottle just this last Nov. but he still wasn’t drinking from a regular cup, two nights ago he pulled out his own cup from the cabinet, filled it with water and taught himself how to drink from it. We never said a word, I didn’t even know that was what he was doing. He had seen Ariel do it and he decided after all this time to do it himself. (he is using a straw cup)

The truth is there are too many specifics to put down and it is happening so quickly that I can’t get them all down. I am just so full of joy and happy tears as I write this because there is just too much to write.

And though everyday is different it is great to have this day of too many specifics!!

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05/31/10

Good Stuff

Starting last Sunday, Daniel has done some pretty great things showing his independence and ability to control himself. It has been really great to watch him gain self-confidence and be proud of himself. Last Sunday we went to church and they had changed the rooms, I had a moment of panic myself because I was in the 2-3 yr old class so I had my own issue with change but that was quickly trumped by Daniels’ face, when he started to take me into the room and I told him that they had changed rooms. In the past this would have turned into a not good situation and David would have had to take him outside for the remainder of church. Not that day! I bent down looked him in the eyes and said “Daniel, they changed the class rooms today and it is ok. Instead of this room you are going to be in that room.” He said “No” and pointed to the room that they had been in since we started going to this church, over a year ago.

I said “How about we just go check it out and see what it is like?”

It worked, he agreed to go with me and he saw that it was exactly the same except in the opposite direction. Thankfully one of his teachers that day has a child with Asperger’s who is 12 yrs old now and she brought a peace to the situation. We were all at peace, actually and we all did very well with the surprise of all of the sudden change. Daniel did well the rest of the day too and he spoke about how we went to church and then to Grammy’s, which he usually doesn’t talk about what we have done during the day. The people at church were all concerned too about Daniel, they didn’t know they were going to have to change rooms until they got there at 8 am that morning so everyone was pretty frazzled. However, they didn’t really understand why it could have been a major issue. It is the sudden change, out of the blue for no apparent reason. Why move rooms? Especially when it had been the same since the beginning.

It made no sense and if there is a heads up then we can all adjust and prepare ourselves for the change.

Although, no one had control over the situation and after I found out why I explained it to Daniel, he may have comprehended or may not have but he had something to process. They didn’t do it to mess with him. :-) These situations are actually very good, we all need them. Life is not predictable and things pop up and change all of the sudden and sometimes we do not get any reason for it. Situations like these help us to not have major meltdowns when things change. I told Daniel how proud I was of him for trying the new class and for doing so well in class. He was singing and dancing during our worship time and he seemed very happy.

We then have this week.

I had told the kids that we would go to the park after we finished our schooling for the day, Daniel started to get fixated on the park and I told him that he had to do school work first. He stood there for a moment and said out loud “No get angry, we do school first and then go to the park”. I was elated! I told him that was very good and he handled the situation very well. He had a few moments of not wanting to finish up school and I told him that he would not go to the park if he didn’t finish. He hesitated a little bit but then came and finished up and we all had a great time at the park.

He looks so happy too after he accomplishes these things and then sees the end results.

He is getting a much happier outcome when he responds in these ways instead of being aggressive and he is taking notice of it. This week I also told him to dress himself. He didn’t want to and I told him “Yes, you do it. You are big enough and I know you can do it”. On Monday, he did it and he was so proud of himself. The next day I gave him his clothes and told him to get dressed, he was having a little trouble staying balanced to get his shorts on so I asked him “Do you need some help?”. He responded with “No, Mom I do it!” and he did it and has been ever since. He thinks that it is great that he is dressing himself.

He has been controlling his temper very well this week.

He has also made efforts to ask for a squeeze when he is angry to help him not lose it. He has gotten upset a few times because of sensory issues, the full moon has made us all out of whack and we have all had problems sleeping, eating and feeling irritable, but whenever he has felt it he has come up to me and put his head into me and said “squeeze um, mom”. He has also been going to the computer when he has had too much of everyone but not too long. I haven’t had to enforce a time limit or anything he has been getting on for a little bit and then has come back to play with Ariel and Joshua or just to hang out with us or read books. It is really incredible to see him do these things and mostly to see him so independent.

He even tried our dinner the other night.

He ate our food! Granted he hasn’t since but at least he ate a whole bowl of the same dinner we had for the first time ever. I didn’t have to make something different, I didn’t have to try to figure what to make him, he sat next to me and at moments he had a gag reaction and I just rubbed his leg and told him that it was ok, just chew it slow and he did. When he was finished I said “You did it Daniel, you ate what we ate for dinner, you did it!” and he said “Yeah, Mom I did it!”. David and I just looked at each other and both of us were a bit teary eyed. There are just no words that can express what it feels like to have these moments. For most people these are everyday things, no big deal, they have never even had to think about how their child will respond to the change of a room, the sounds in a store, the textures of food, the ingredients that could send them into a meltdown or just learning to put on their clothes when they are five years old. In the past it has been one step forward and two steps back, that has not happened in a long time, not that it can’t happen again, it is just so great that he is achieving so much and the progress is continuing.

Daniel is talking more and more everyday and his words didn’t start coming until a year and half ago.

He can tell us some things that upset him, if he is happy, if he wants something, these used to all be a dream and at times felt like it would never happen. It is hard to comprehend that this child who can count to 100, knows over 20 different colors and a zillion different shapes, can spell, read several words, play computer games, repeat the tune of Mozart and any music for that matter, can do kindergarten to 1st grade worksheets and on and on, was just able to put on his clothes himself, finally plays and asks to play with Ariel and Joshua or me or David, is starting to be responsive to others and tries to talk to them. It’s the social things that he is getting into, he wants to, he likes people and wants to be apart of what every body is doing.

He is not nonsocial, either are we but it is just much easier to understand things or learn information than it is people and it is a lot less stressful.

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05/22/10

Angry or Frustrated? Just Growl!

That’s right, I taught Daniel to clinch his fists and growl when he is angry or frustrated and cannot tell me what is going on. I did this because I had to come up with another way for him to handle these emotions. He has a handle on happy and now he is understanding his feelings when he is sad and what to do but it’s the angry and frustrated emotions that are in need of an outlet. The other day he got angry at something, no idea what it was and the next thing I know he jumps me. I had no idea he was upset or that I was going to be recipient of this anger. He proceeded to hit me and scream at me and no one knew why.

I really don’t like talking about this stuff but I feel that I need to get it down.

I wish these things wouldn’t happen but they do, that is the reality of our world but I feel that somehow I can help him control it better or communicate it better. I had to learn as a child that when I had meltdowns or got angry I got in trouble. (Though that didn’t stop me and I have had my share of meltdowns and anger spurts as an adult) I was punished for my behavior, I constantly had bad markings in school for conduct. I was not purposely trying to cause problems but my behavior was unacceptable. There were a couple of times that I had hit other children and I got in trouble for that. Most of the times my punishment was isolation. And that is what I have had to do with Daniel on many occasions.

I have had to put him in his room and let him take it out on his bed.

I have had to do that instead of it being me, toys, the house or the other kids. Most times I do not believe he is doing it on purpose, something has happened that we do not know or understand. He doesn’t know how to communicate it and he gets really frustrated. When this latest one happened, I came into his room and sat down with him, I shared with him that he can absolutely not hit mommy any more or anyone else. I told him that he cannot throw his toys or other objects otherwise I will have to take them away. I did not want to say this to him because I want so much to understand why he is doing it. I know there is a valid reason in his mind. But I also know that I cannot allow him to continue especially when he was doing so well, I know he can control himself.

I decided to do more research on the subject.

In almost every case they said to do the reward system. Tell the child if they do not have any meltdowns than they will receive they favorite whatever. The parents offer TV time, food, games, going to a favorite place, etc.. One parent I read said “I tell him that if we go a full day without any meltdowns at school and home or when we go to the store then he can have his TV time otherwise no TV time”. I don’t feel comfortable with that, I am not that kind of parent. I do not believe in rewarding my children for them behaving the way that they are already supposed to. Maybe I have too high of expectations but just because Daniel is on the Autism Spectrum doesn’t mean he isn’t capable of acting the way he should. There are rules in this world that I fully agree with, do not go around hitting people and throwing things.

I think that is a pretty reasonable rule, one of many.

In reading about this I got pretty frustrated with the no answers and what seems to me to be direct training for manipulation and control. How can they have a job, a relationship, friends or I don’t know any individuality, if they are just being taught to be a rat in maze, doing a good job, to get to the end for its reward? I may be a bit extreme, I do see the value in positive praise and certain motivations but when daily tasks like eating your food, making sure that you make eye contact or say hi to someone is the means of a grand reward, like receiving a new iPod, I have a problem. Daniel now makes eye contact because I spent a lot of time looking at him in the eyes when I spoke, which just so you know is incredibly hard for me but I had to because I couldn’t understand him unless I did and I knew it was important in his development.

He doesn’t have to do it all the time but he does do it when he feels he has something REALLY important to say. Me too.

I did not reward him with things but I guess I did reward him with positive praise, but not constant praise. There just has to be a balance I think. I know that some of these parents were taught by professionals, doctors and therapists who say this is the only way, who am I to argue. I don’t believe these people are bad, I just don’t understand it. Possibly they have tried all other routes and this is the only way they could get positive results, who knows. As for me though, I spent time during the last meltdown showing Daniel how frustrated I was because I didn’t understand why he was upset. I clinched my fists, closed my eyes and said “GRRRRR”. I told him that was how I felt because I didn’t know why he was hitting me.

He then began to laugh.

I asked him if he would please do that instead of the other things he had been doing, he said “yeah mom”. Although I wasn’t sure he understood but we went about our business for the day. The next day I heard him in the front room throwing something and hitting the wall, I came in and asked if he was angry. He kept hitting the wall but looking at me as if any moment I was next, I sat down next to him and I asked him “Daniel are you angry or frustrated?”. He began to say “GRRRR”, I asked him to please stop hitting the wall because we really don’t want to hit things and I told him what a great job he was doing telling me how he was angry. He buried his head in my lap and growled again and I said “That’s right Daniel get the “GRRRR” out”. He thought that was hilarious and he started to laugh and say “GRRRR”.

It was only a few minutes and he was happy again.

Apparently a noodle necklace he had made broke and he was upset about that so we got rid of it and moved on. All this week he has been using the new “growl” technique and he is starting to tell me what it was that made him upset. Now instead of getting kicked out of church for trying to throw chairs he will get kicked out for growling. Ha ha ha Oh, well it is working for us at the moment and helping him identify what his emotions mean and how they feel. It may not work for everyone but it is working for us so far. Each day is a new story with different endings.

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05/22/10

Bird Food

I forget that the words I say and the things I do can be confusing at times for the kids. I should know better since I spent most of my life doing the very thing that just happened here with my guys. As I got older I got better at understanding silly things like this but I still find myself doing similar things as what Daniel did. It all started with the cat food, I was getting cat food into the bowl and told the kids that I was going to feed them cat food for their breakfast. Why? I have no idea for some reason I thought it was funny to tell our children such a ludicrous idea. Joshua looked at me like I was crazy and stared for a second, Ariel did the same only hers was for a half of second and she quickly said “no, you are not.” .

Joshua jumped in to inform me that they were not cats so they could not eat cat food.

David chimed in and said well I guess I better go get some dog food then. Ariel and Joshua both replied with a “NO! We are not dogs, silly.” I then grabbed a bag of birdseed and said “well how about bird food, will that work?” Nothing occurred to me until Daniel said “YEAH! I want bird food”. He came up to me with his bird feeder he had made a few weeks ago and I looked at him having flashes of me doing the same thing through out my life. It was very cute and funny at the same time but not funny. We didn’t want him to feel like we were laughing at him so we did not and I then tried to explain to him that it was a joke.

A joke.

Immediately I thought how on earth is it funny to offer children food that animals eat? What made me think it was funny? Why did I even think of doing that? I don’t know but I think  somehow it is a script I learned. That is what it felt like something that I was taught. I don’t know. I explained to Daniel that it was funny because mommy was pretending that they were her little kittens, dogs and birds but that is silly because they are not and they do not eat animal food. He did not get it either did I and he was fixated on eating bird food. I am glad it was not cat food or dog food. I pulled out some “O” cereal out and said birds eat this too so I can put this in your bird feeder. He was happy and is now running around eating from his bird feeder and being a singing bird.

It all worked out.

Thank goodness that could have turned out a little rough had the “O’s” not worked but they did and everyone is happy. Though I had to get little bowls that I had fed birds with in the past (not the same ones, they were similar ones) because Ariel and Joshua then wanted their bird feeders but they have been outside feeding the neighborhood birds for several weeks now. All of this brought about things to my mind that I question a lot, the things that parents say to their kids. I hear parents say some things that I find incredibly mean and some things that go against all reason. For some reason we tend to think that children do not understand or that the words we say have no impact on them. Words are exactly what have caused me a life of confusion.

We have different interpretations of what words mean.

As a child words can have very different meanings than to an adult. Jokes can be very damaging and hurtful. Especially if you are being laughed at and you do not know why. Or you figure out that you are being laughed at because you do not understand. These can place small seeds of insecurity in a little soul, not that anyone has done anything wrong it is all just a misunderstanding. For instance, if you say “Don’t walk on the grass or the police will arrest you.” it can be pretty frightening to a child who may not understand that joke. Or once a teacher told me to do something, I couldn’t hear her, there were other kids running around and talking and a rustling that was making my head fuzzy, she said “Oh, get your head out of your butt and listen to me”. I was in kindergarten and I still remember that day, where I was, what I heard, how I felt and all of the kids who heard it started laughing at me. I didn’t understand why they were laughing at me or why she was so angry because I couldn’t hear her.

I am still confused by that whole thing.

I believe these kinds of things can be more damaging  for a child on the autism spectrum or with any social anxiety. Maybe those things are some of the root of my social anxiety. Even now I get laughed at and I ask people why. “Why are you laughing?” Those are common words that float from my mouth. They say “because that was funny”. “What was funny?” And then they proceed to laugh at me more or act as if I am messing with them. I am not in some cases, in others I just may be messing them. ;-) I have learned what is funny to some people and they find being honest very humorous. If you say the obvious they laugh because they cannot believe you just said what they were thinking.  However, I do not do it to get laughs I say things like this before my brain has time to think it could be inappropriate.

Then there lies the other question, why is it inappropriate?

I like it when people are honest with me, I prefer it. Good grief just tell me why you are angry with me or why you find me so amusing don’t keep it to yourself. I would like to be filled in on this other world that is going on behind my back. Maybe… maybe I don’t want to know at all. I am now thinking it is better to just not know what others are thinking and stay in my happy little world of misunderstandings and being a bird. Now if you will excuse me I have some “O’s” to go eat, while wing flapping to my favorite song with my little chick-a-dees!

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05/17/10

Great Day By Our Terms

Yesterday was one of those Sundays where the children did not want to go to church,  but our main reason for going to church is for our children to socialize. We normally go every Sunday so it is a routine as well and it helps us prepare for the beginning of the week, it is really good for the kids right now. Our faith is another story, but bottom line, we do not fit in well, our faith isn’t restricted to a small community and it is very uncomfortable to have it be a social club for us. We can’t socialize very well with people who are not into the arts, philosophy, all kinds of music, science and open to discussing other faiths and how to find common grounds with those of different faiths.

There is just something missing.

I have spent a lot of time studying scriptures and the context from which they were written, the western church seems to be something that doesn’t  want to educate people about scriptures or other cultures and beliefs, the churches we have been in do not challenge and do not seem to give the motivation to love others without an ambition to get those people in the door or have them utter the words that “Jesus is Lord” but leaving out a transformation that can only come from God. I consider a transformation not being the same beliefs but the awareness of others needs and accepting people without a selfish motive.

I am not a hater I just expect more, I think Jesus expects more.

I do like our church, the people are very friendly and more open than the other churches we have been in and it says a lot if we trust them with our children. It’s hard to pinpoint the issues without it sounding as though I am attacking, I am not, we are in a good place, a church that is safe. After what we have gone through with others that is exactly what we need so we don’t lose faith in people, because that was where we were at when we found this church. I take responsibility for my own faith walk and I get aggravated when others do not, maybe that is what it is, who knows. My little rant there.

Anyway we went to church.

For some reason Daniel decided to take a pink mirror and a Lowe’s patch that he had gotten for building a project. I thought for a moment it might be a problem but then forgot about it. Kids and people still have issues with boys having anything pink, I don’t know why. Who cares if it was a girls mirror, he likes it, it’s a mirror and mirrors are cool. But we did put his items in his pocket to help him keep them safe, hoping he would not pull them out and lose them. They all went to class just fine, Daniel even ran in and sat on the carpet ready to play with the other kids.

We made it through worship and about 10 minutes into the teaching Daniel’s number popped up.

I went out and there was Daniel and Joshua. Joshua said that the music was too loud so he wanted to be with the babies, for some reason the music has really hurt his ears lately and he can’t stay in the room during worship. Daniel came up to me and  started to hit me a bit and I told him that he was not allowed to hit me, and I told him that he needed to tell me what was wrong so we could fix it. He did stop (huge) and then he said that he wanted to leave so whatever it was had really upset him. I took him to David and went to get the other two kids. I went for Ariel and she was crying, she had Daniel’s mirror and patch. She latched onto me and just started sobbing, I asked her what was wrong and she had gotten upset because she was not able to sit next to Daniel during their worship time and then he was gone so she was worried about him.

I don’t know if that is a twin thing, a sister thing or an Ariel thing.

It is probably all three of those things. I was not discouraged or anything by what had just happened I just had to come up with something to occupy our time to ensure we got home at the usual time and not affect our daily routine. We went to Micheal’s craft store and got some items for home school, they got to pick one toy (they were $1.00 each) and they were so excited. Funny what makes kids happy. I had tried to ask Daniel what happened on the way home but he didn’t want to talk about it so I let it go.

When we got home he looked at me and said “my mirror”.

He had his mirror so I asked him if something happened at church with his mirror. He said yes, I asked if someone took it and he was getting uncomfortable talking a bout it so I asked him if it was a girl or a boy who took it. He then shared with me that a girl took his mirror from him and would not give it back. Then he said that he cried in class. I knew he didn’t cry so I then realized that he was telling me the emotion he felt. He felt sad, when you cry you are sad. This was one of those moments that brought tears to my eyes. He told me what had happened and how he felt about it!

He had never done this before.

I shared with him that it was wrong for the girl to take it, but I don’t think she did it on purpose and that next time he should tell his teacher or mommy when we are there so we can take care of it right away. He said “Ok, Mom”. I don’t know if he will but this was a big step. I later found out from the teacher that there was a misunderstanding, a little girl thought that the mirror belonged to a new girl in the class and she took it from Daniel and gave it to the new girl. Daniel didn’t understand this and the little girl thought Daniel had taken it so there you go. At the end of the mix-up the teacher thought the mirror was lost and come to find out Ariel got it. She told the little girl that the mirror was Daniels’ so that could have been emotional for Ariel as well because the little girl is her friend. Well the little girl thinks Ariel and her are friends. Every time she says “Hi Ariel!” Ariel looks at me with this face like “What do I do?”

All I know is that people have problems with boys with pink mirrors and it trickles to their kids! Just kidding. (Kind of):-)

But it was all worth it to have this break through moment and now I will work on helping him express more emotions. The anger and frustration one is something we have been working on. I am trying to teach him how to direct that in a more positive way. He was doing really great and having fewer meltdowns but with all of the new progress he has been making I think he just hasn’t been able to find an outlet. We are a work in progress, I still have to deal my own meltdowns! I will focus on the positive.

So for us all in all it was a great day and I am ecstatic!

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05/17/10

It’s Been A Year

This month marks the one year of my blog. When I started it I was afraid I wouldn’t have enough to write and now I find myself limiting my posts because on some days I could post three or more and still have more to say. I have found blogging to be quite healing. It has given me an outlet and a purpose. I didn’t want to write to just be writing, I wanted to write for myself, Daniel and others who may benefit or relate in some way. I feel that I have fulfilled these goals and I am looking forward to the next year of blogging to see what transpires in our lives.

The benefit of looking back.

The blog has helped me to see where we were a year, a month, a week ago and it has given me the motivation to continue on the hard days. I have had many days that I have just rejoiced and sat in awe of the progress both Daniel and I have made. Myself benefiting from past hurts emotionally and Daniel with his physical, emotional and social needs. I have found that me working through my own personal issues has made it much easier to pin point certain things in all of the kids. I am much more sensitive when they cry, or they are unable to articulate what is wrong, I am understanding the differences between throwing a fit and having a genuine issue that they need help with. I was not so intuitive before and this parenting thing is a life long lesson anyway, I just try my best and learn from my past mistakes.

The blog has revealed to me how much my children have helped me be free from many things.

David has helped me by guiding me to find myself and challenging me to think and my kids challenge me in areas as well, like insuring my inconsistencies are revealed by asking questions that reveal them. That is good and I am very thankful for them. Being reminded of my inconsistencies helps me handle it much better. When I first started the blog I would pour over what I wrote fearful that I misrepresented something, that I had left things out or put too much in, my spelling, my punctuation,  had I not made it clear enough, on and on thinking of the possibility of having it wrong somewhere or the biggest thing I do which is repeating myself. I do I repeat myself and I forget that I have already written it.I do it when I talk so I can should expect myself to possibly do it when I write.

I am feeling more comfortable with these things.

It is not the end of the world to have a spelling error or to repeat myself. I have found that it is alright, I have done nothing wrong. I am expressing myself and sharing this part of our life, which is the major part so that could be why I get so obsessive about it. After a year I am feeling much more at peace, however there are some days when I post something and a shot of panic runs through my body, my heart starts to race, my head is dizzy and squiggly fuzzies seem to engulf it forming a layer over my eyes where I cannot even focus clearly on anything and just when I think I am going to have a heart attack, I run to David and tell him. He comforts me by reminding me that this is mine, these are my words, my voice.

No one can take that away and no can say that it is wrong.

If they misunderstand my words it is not my fault and there is nothing I can do about it. Before I tried to control my world through self harm for fear of these things, constantly being misunderstood and misunderstanding others. After a year of this I am finding that it is ok not trying to be in control, because I can’t, I can never make everyone happy no matter how hard I try and I should not be expected to.

It is perfectly fine to share my voice and not allow others stop me.

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05/5/10

Onward and Upward!

This past week I have been dealing with trying to understand my feelings about my family, I had several posts up but decided to take them down for the time being until I can get the full scope of the process and have an ending resolution. I do not like things to be hanging, we need an ending and hopefully it will be a happy one. I am utterly confused by the social dynamics of my family and I would rather not have readers go through my same confusion until it can be in a nice neat flow.

Now onward and upward!

I believe I had shared that Daniel had several weeks that were very intense, now we have the outcome. I am quite amazed at the progress he made. He is doing things that I tend to forget are milestones, sometimes being so close and being emotionally exhausted can cause one to lose their sight. Now pondering over it all in hindsight, I am just in awe. Daniel has progressed into more conversations, he is telling us things. He is coming up to us and telling us about the computer game he just played, asking me questions like “why is that guy crying?’ from someone on TV, he is asking for music and saying “I like that song”. Incredible. I don’t really realize how awesome it is until I step back and remember that even two weeks ago he was not doing that.

Some other things that he has done I kind of gave up on, at least for a while.

I asked him to draw a picture of himself the other day and he did! Only he did not stop there he also drew Ariel and told me that the brown face was Daniel and the red one was Ariel and Ariel was dancing. He told me a story! It was his first face drawing, his first people drawing ever. So I guess I didn’t really give up since I continued to ask him to make a face over the past year or more. I am so excited to see that his social skills are improving with others as well. Although there are some things that he does on purpose that are great milestones in that he is learning them but kind of bothersome for Ariel and Joshua.

He is learning personal boundaries and testing the waters so to speak.

Joshua or Ariel will be playing and Daniel will start to hover around them, they ask him to stop and then shortly comes the “Mom, make Daniel stop, he is in my space.” When I ask Daniel to stop he laughs and then runs away but comes back for more. He finally gets bored with it and leaves them alone but he thinks it is funny. We are trying to explain to him that it is not nice to do that, he knows. Another great thing is his new interest in reading and spelling. He counts the letters of every word. The ones that he knows how to spell he will spell out loud and then say, for instance, “Cat, cat has three letters”. I found this out because I asked him to spell his name one day and he spelled it then said “Daniel has 6 letters”.

I jumped on it and I have been using numbers to help him spell.

It is working, he has learned to spell several new words and tells me every time how many letters are in the word.  So down to the really great thing that happened, we were not expecting it at all and it was a huge moment of amazement to us. Daniel used dominoes to create things, like trees, fish, a car, rain, the best one was when he said “Look mom, I made a pond and I am a turtle in the pond”. Then he said “Daniel’s not a turtle mom, now Daniel is a dog”.  He just kept going talking to David, Ariel and Joshua as well, telling them to look at what he made and then he would tell us what he was doing with it or if he was some kind of animal in it. It was such a pivotal moment. The greatest thing of all is to see how proud he is of himself, coming up with his own ideas and games. He surprises us all the time and I am so glad that I am not so caught up in ensuring that he makes milestones, that he is able to do them on his own. They belong to him, he did it and chose when it was the best time for him.

So when he does do these great things, they are joyful and a great surprise to us all.

Daniel wrote his name all by himself yesterday for the first time. Joshua did as well but he is still working on letters but he did great. Ariel has been writing her name since she was three.  As I watched Daniel I saw how hard he was struggling, the intensity it took to hold the pen, his concentration ever fixed on each letter as he wrote it and though it was clear he wanted to stop, I encouraged him and told him that he was doing it and what a great job he was doing, that motivation pushed him through. He even did it for me again, though it was very clear that he had used a lot of energy, he did it anyway, I told him he didn’t have to but he did it anyway. He accomplished it. It was a great moment to see him so happy.

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05/4/10

Aspergers and Anorexia

I have been reading quite a bit in the past several weeks about this new information that Anorexia could be connected to Asperger’s. My reasons are because I suffered from anorexia and would like to know. The sudden interest once again is linked to my family situation that I am currently working through, because I cannot eat. Whenever I am upset I can’t eat. So that triggered me looking into this once again.

There was a time when I made myself stay at 99 lbs.

All through my early 20′s I would not let myself get over the 99 mark. If I did I would stop eating. I was broke most of the time and couldn’t afford food so to remedy this I took diet pills. No one ever knew until I told them. I would eat and I can eat! I have now discovered that I would binge eat. I could throw down two Big Macs, a large fry, chicken nuggets and be hungry again in about an hour. Not really impressive though, if you don’t eat for days it is very easy to eat a ton of food.  But I did eat quite a lot however, it was always like once a day so I made sure people saw me. Easy enough. At least I had a mark though, I knew I couldn’t go lower than 99 lbs but I had a secret goal of 85 lbs, I never made it thank God!

I had a hard time dealing with my 100 lb pound mark.

People started to take notice of my size so if I could say that I was 100 lbs I figured that was good. Along the way I had people who cared about me tell me that I was just too small. And eventually I did get to 105 lb and stayed there until my second divorce and then I went back down to 100 lb because I had no money for food and I was upset a lot and was unable to eat. When David came around his goal was to fatten me up. I was sick, my color was bad, I was not in good shape at all. I was skinny but in bad shape. I did get back up to 105 lb, freaking out the whole time but I was there when I got pregnant. I was very concerned with my weight when I got pregnant and I was concerned that I would gain a ton and never lose it.

I quickly got over that and felt the health of my children were much more important than my weight.

I gained a ton and I gained a ton with Joshua as well. It took forever to lose the weight but I have lost weight and I am at a healthy size. There is no need to disclose that information but I am exactly where I am supposed to be for my height and age. It has taken a lot to over come and I still haven’t in some areas, when I look in the mirror I see a very large person. I think that my stomach is huge. I feel on some days that I am just disgusting, though I know it is not true I cannot fight what my eyes see. My husband has loved me and has thought that I am beautiful no matter what size I have been and that is pretty much all I need. I do need his input to help reassure myself that I am not as big as our house.

Interestingly, I do not see others like this at all.

Everyone else to me is the same, there is no difference in shapes, size, height whatever. Everyone seems to be my age or younger and average size. It is only when it is brought to my attention like someone saying “Oh I have a big butt” or “I look fat”. Then I am aware of their shape and if they are skinny I am like “You are ridiculous, why are you saying that”  if they are large I inappropriately say “Yes, you do look large” or I say nothing at all. Because I remember I am not supposed to say the other thing. Although, if I ask David if I look large or bad in something I fully expect him to tell me and he is quite honest with me all the time. And I appreciate that.

So now that they are doing studies  about autism and anorexia, along with other eating disorders I find it quite interesting and will stay on top of it.

Our family has a predisposition so I want to be aware and watch for any signs. Appearance isn’t really a big deal in our household and my issues, David and I have kept between us so that the kids will not hear it or be influenced by it as I am still over coming things. They seem to be perfectly happy with their bodies and unaware of any eating issues. I take great comfort in that because I remember when I was 5 yrs old, that is the time that I had become aware of my weight. My pediatrician told my mom that if I did not stop eating the way I did that I would become obese. I was not a large child, I was just an eater, still am. I remember from that day on, I thought that I was fat.  And so the eating disorder began. Food and  nutrition were not explained to me and either was this comment. I took it, held on to it and used it as my spring-board to make sure that I would never become obese.

It’s those kinds of things that really need to be clarified to any child but especially those who are on the autism spectrum.

My situation was enhanced by my mothers obsession with her weight, my boyfriends who told me I was fat and the many media outlets that informed me of what I was supposed to look like. I also think that I wanted control over something because my whole life had no control. So controlling my weight and cutting myself were a means of feeling something and feeling in control. No one could make me gain weight and no one knew that I was cutting myself. They were mine. I would like to know how much cutting plays a roll in eating disorders as well.

Here are some articles that I found quite interesting.

http://autism.about.com/b/2007/08/23/are-asperger-syndrome-and-anorexia-connected.htm

http://autismaspergerssyndrome.suite101.com/article.cfm/aspergers_syndrome_and_anorexia

http://www.huffingtonpost.com/trisha-gura/anorexia-wired-like-asper_b_61506.html

http://www.timesonline.co.uk/tol/life_and_style/health/features/article2272080.ece

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05/3/10

Some Videos

Here are some great videos that have been very comforting and confirming. I wanted to share them. Taylor Morris has a ton of videos and I think she is great!

http://taylor-autism-aspergers-syndrome.com/

http://taylor-autism-aspergers-syndrome.com/another-video-story-like-mine/

Here is Haley’s website. http://www.haleymossart.com/myART/Welcome.html

http://abcnews.go.com/video/playerIndex?id=4313425&clipId=4313425&playlistId=4313425

Here is Carly’s website.

http://carlysvoice.com/

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05/2/10

Defeated

I accept the defeat. I am tired of going over it in my mind and I am tired of having hope that things may change. I have accepted the defeat of my family wanting to understand Asperger’s or any form of autism. They do not. I am not upset or angry I am just done. Only a few family members have taken the time to listen to me or care enough to read at least one page of my blog. They don’t talk about it, if anything is said I am commended for having a positive outlook on my situation.

I find it all sad really.

It is impossible to explain our life to others and have them relate to it unless they are willing to have an open mind. If you look at autism in all forms as a disease, a curse, some form of weakness than you will never really be able to appreciate the good things that come from having a mind wired so differently. I am not saying we are superior, I am saying we are different. The autistic mind has a different perspective that many can not accept.

I will admit I am kind of hurt and I am working through this.

Since no one has responded when we shared with the family about Asperger’s and even now over a year later, I do not know what they are thinking. Daniel is like something we sweep under the rug and dance around in conversations and if I even mention anything about me, well it is very clear no one buys it. I do wish for a moment they would take the time to look back at all of our interactions. All of the times they thought I was rude and I had no idea why they were upset. All of the times they said “you’re crazy”. The times I would say outlandish things, or started dancing for no reason, or shut down completely and isolated myself.  The way I am so animated or will not let up on a certain topic. All of which  I still do.

If they really took the time to think about it, I believe they would see.

However, I don’t think they can because it would destroy their whole beliefs about autism. Maybe it’s too much for them. They all have me labeled as the quirky, silly girl, who would say things to get in trouble, kick her aunt in the head because she changed the channel, have to get spanked because of her attitude, and be rude sometimes. I’m just weird and that label is just fine, but do not say that I am autistic in any way, because then the whole concept of the world we know will be swallowed up into a black hole, never to be recovered. If we acknowledge that Daniel and I or even David, Ariel and Joshua have autistic traits then we are flawed. So I accept defeat with honors and I say “hip hip hooray” while raising my white flag. I will do what they refuse to do, I will accept them fully with no expectations of them staying in my mold that I have created them in. Maybe one will surprise me, just maybe they will look up Asperger\’s and ask me questions, possibly look into the other things that effect us as well and read about the types of spectrums.

I guess I have not fully accepted defeat, if I still have the hope of them understanding and acknowledging  that we indeed are on the  autism spectrum:-)

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