Mind Retrofit

Archive for the ‘Stages of Change’ Category

Daniel has done some pretty great things in the past week and I want to make sure I get them down so I can remember when they happened.

Last week the door bell rang, we do not answer our door unless we are expecting someone.

Yes, people think we are strange. Our car is parked in the drive way and I am positive they can hear the kids and me sometimes but I don’t care. I do not buy anything from someone at my front door (or my back door) and I get really upset when they will not stop knocking and ringing the door bell just to sell me meat from the back of their truck, that I find quite frightening in itself, but I will not go there. Anyway sorry for the detour, the door bell rings, I say don’t answer the door, the kids are running for the door, Ariel yells very loud “DO NOT OPEN THE DOOR!”. I say “SHH” as I run to the door to stop Daniel and Joshua from opening the door, I look out the window it is no one we want to talk to and I say “No, guys don’t open the door”. We all walk away and Daniel looks at me, points to the door and says “They are not friends, Mommy?”  He got it! I said “That is right Daniel, they are not friends.” That was the first time he had communicated that he understood the difference between strangers and friends.

I believe he understood to a point but I think that day he understood it fully.

Today the kids stayed with my mom for a little while so I could have a short break, I haven’t had one in about three months so I needed about an hour of alone time. I usually get a break once a week for a couple hours but that hasn’t worked out for several months, for various reasons. I came to get them and as we were all in the other room talking, Daniel came walking in and had one sock on. He has never been able to put his socks on! Today was the first day he did and he did it without me asking. He was telling us that he was ready to go and he was preparing to leave independently. I asked him to get his other sock on and he did and then he put his shoes on with a little assistance. Then when we got home he took off his shoes when I asked him to. He hasn’t done that either. Awesome!

I was pretty excited about those things, the great thing is how unexpected they are.

I haven’t pushed him, I have just waited on him. I tell him these things, I show him how to do things and then I get to a point thinking “well its going to take more work, or even may not happen”, then surprise, surprise! He does it out of the blue. Which brings me to this evening, I was trying to get him to try some pureed pears, he didn’t want to. I asked him again and I told him it was white, (he likes white food) and he said “No, it’s not white, it’s yellow”. I looked at it and he was right. I started laughing. Joshua and Ariel wanted to try it so I let them, then I said “Daniel, how about you try it? Ariel and Joshua tried it and they are your sister and brother so you should try it like them. Come on you have to since they did.” He started laughing and said “No, tease me, Mommy.” I looked at David and asked him if Daniel really said that. So I asked Daniel what he said and he said it again. “No, tease me, Mommy. I want white yogurt.”

Hmm…Some pretty great things happened. What seems so small to others is huge for us.

Yes, that is correct my brain is functioning a lot better. I was thrown off for a while but I made some changes and reminded myself that I need to take care of myself if I am going to be any good to anyone. My first plan of action before I was even able to reorganize was to get back on my workout regime. I know that working out is a must for me but that is usually the first thing I skip on when things start to spiral.

Working out is one of my stims.

Although, I have to keep myself balanced because I can get a little obsessive about working out. Even if I just do 15 minutes of cardio I feel a lot better. I mix up all of my routines to involve cardio, weights, yoga, and Pilates. I got a bike as a gift so for the summer I plan to add that to the mix. My family on my father’s side are all runners but I just can’t do it. I don’t have the time right now or the discipline. I find when I do my workouts that my mind is much clearer and my sensory issues do not seem to be as extreme, usually.

I have gotten the children involved.

Part of the whole house revamp was schedule as well. So I redid our schedule, made pictures to help all of us and put them up on the wall so we can stay on it. Ariel helps keep me inline, if I do not do our schedule I do hear about it. She makes it very clear that we cannot get off of our schedule. The first course of action after our morning breakfast and family time, is WORKOUT Time! Granted they do not do all of my workout but I give them their bouncy ball and they get to bounce around to their little hearts desire. They do try some of them moves and their favorite is “rolling like a ball”. I like that one too. The changes I have made with getting back to my workout schedule and reorganizing has made a huge difference.

Now I just have to make sure I stick with it.

I did it! Finally, I reorganized my entire house. I have been trying to get back on track since the holidays and it just has not worked out. I have this cycle where I get things all under control and flowing and then BAM! Something happens like holidays come, the season changes, some unexpected something happens and I get thrown off. It is a downward spiral, one little thing gets out of whack then there it goes, out of my grasp before I knew it. All of the sudden I awake to complete clutter, behind on my laundry, school, reading, writing, I begin to isolate myself and go into a shell.

This time was the first time I actually saw it unravel before my eyes.

It is not like I do not like to clean or organize, on the contrary I love it. It makes me very happy to clean the house and see the glistening floors, the beige of our carpet, the toys all in their proper place. But when I fall behind I cannot seem to find my way back and it becomes a blur in the background. I begin to not see it but I feel a constant closing in on me. I waited for a month or so dredging through to get the home schooling done each day, slowly getting my laundry done but then leaving the folded and even our clothes on hangers in the baskets, toys everywhere with no matches. It was horrible and I had to shut down because it was too overwhelming for me to deal with. I kept telling myself, “ok, today I have got to get everything organized and clean”. I did this for about three weeks. When I could no longer take it and noticed how much it was impacting the kids and making them chaotic,  I told David that I had to go to the store and get organizers and redo all of the toys, my school filing system, my therapy boxes, the whole house.

I had to do it starting that day!

That day was last Monday. I went for it and when I felt overwhelmed and wanted to give up I continued to press through. I would feel like giving up and then I would go look up sensory information to remind myself. I looked up visual input and read how it affects us so it would motivate me to keep going. As I did this I finally finished one room, the play room, and I could hear the angels sing from heaven “ahhhhh” and the room filled with glowing light. Yes, it was heaven for my mind. It motivated me to keep pressing on.

I kept telling myself “I can do this”.

I am usually so overwhelmed that I cannot focus and get anything done. This time I made a plan. One room at a time and if I got further than expected than great but if I only finished my one room for the day then I had achieved my goal. I set up storage boxes with pictures and labels to help the kids know where to keep their toys. I thought about a filing system that I could actually keep. I redid my pantry, my books, I redid everything. I need things to line up and be from shortest to tallest with my books and pantry items. I need my clothes to be in the Roy G. Biv in my closet and organized by short sleeves, long sleeves, sweaters, pants, etc…and my shoes have a particular order as well.

All of this had been disassembled because the children had no direction for keeping their toys.

They also had some play days in my closet and it was too much for me to clean it up. I had gotten behind from the kids being sick, my mom having a new schedule because she got a new job, David being consumed with work, and I realized I shut down because my house was a mess and I was constantly stimming trying to get my mind at peace. The house went through a major cleaning. It was hard but I took a week and did it.

I have issues with throwing things away.

I always end up talking myself out of throwing things away because “one day I may need it”. However, this time I forced myself and it was good. Only a few moments of anxiety but then I was free. I had a theory that this chaos was making us all out of control and causing havoc. I am very happy with the achievement of pushing through and getting it all done, especially with no meltdowns on my part and I believe my theory is correct, we all have a bit more peace of mind. Daniel was dumping piles of toys on the table and I believe it was the same thing I was feeling, visually overstimulated, so he was making more chaos. It was driving me crazy and making me irritable. Now he is not and all of the kids are putting their toys where they belong. The house is clean, everything feels linear which makes me feel at peace, everything has a place and it feels peaceful and calm in our house.

The key for me was to create a system that the kids and myself would find easy to follow and continue to implement, I think I found it.

This past week Ariel has taken a special interest in being with Daniel. She has been by his side for days. She has shown an interest in fans and all sorts of spinning things for hours. She transformed the kitchen table into a “Fan Table”. She has moved her chair next to Daniel’s and they have been playing together with all sorts of spinning fun. She has also taken on spending time with Joshua and they have been building the entire 6 movie Star Wars adventures spread across the living room floor. Since she has been spending so much time with Daniel, he too has joined in the Star Wars adventures.

I am not sure why she started this and I have asked her about it.

When I asked her why she was acting like Daniel and playing with fans and other spinning things she said the same thing every time I asked, “every where I go I see Daniel, when I am painting, playing, whatever, I see Daniel and I want to be like him”. Since this was unusual behavior I had a hard time letting go. She had never taken on his mannerisms for such a long period of time, she had never talked like him before or taken such an interest in fans. I found it quite interesting and a bit confusing.I noticed the behavior after we had gotten home one day.

Ariel and I went out to an all girl event for the day.

When we returned Ariel was highly emotional and latched onto Daniel. She had such a great time and she seemed very happy. I think she was still happy but I am not sure about her change in behavior when we got home. I thought maybe she felt guilty for leaving the boys at home, or if she really missed Daniel because he is her twin. I thought maybe she felt as if she could help Daniel not feel left out but Joshua didn’t go either so I really am not sure. We have said on several occasions that we cannot go out because it will be too much for Daniel, so maybe she thought she could help him. I really don’t know and I am not sure she does.

Whatever the reasons, some really great things have come out of her hanging out with Daniel so much.

Last night all three of them pulled out tons of toys, they set up palm trees, got out the play food and cars. Joshua told me that they were on an adventure, Daniel chimed in and said we are going to the beach, Ariel said I am making lunch at the beach. Daniel was playing make-believe and actually getting into it. They all three had their adventure it was great. Ariel and Joshua have been pretending to be dogs for quite some time now, early this week Daniel started being a cat. He told me “I am a cat, mom. Meow”. And he went around the house acting like our cat Nathaniel. He has been doing it off and on all week.

Daniel and Ariel have been having some serious conversations about fans this week.

I have noticed them talking at the table together. It is pretty great to watch them interact together like that. I am amazed at Ariel feeling the need to be with her brother and her actions have helped him get into a another dimension of play. All three of them like to have their alone time, Ariel and Joshua have been the ones who normally play together, so to witness this new kind of connection between all of them has been really great. All of them have been sharing, talking, coming up with ideas and having fun.

Daniel has been talking a lot more too.

Daniel surprises me sometimes with the things he says, I get it in my head that he doesn’t know what words to use because I am so accustomed to him not speaking in sentences that flow but then all of the sudden he says something like” Mom, go push the button on the computer to turn it on”. I sit there thinking “did I really just hear that?” or he will  joke with me,  like come up to me and say ” I am not Mommy’s Daniel, I am Daddy’s Daniel.” Totally amused with himself he will laugh and then tickle me. Since Ariel has been spending so much “special interest” time with him he has been doing these kinds of things a lot more. It is really great to have my kids mess with me! I love it! Joshua has always taken a vested interest in trying to get Daniel to play with him and I think that has helped quite a bit too but to have both of them come together and want so much for their brother to be a part of their fun is really great.

It is truly amazing what siblings can do for each other.

The other day I showed Daniel the beginning of “Puff the Magic Dragon”. It was this part watch?v=R6wJqdnMUEk. I wondered how he would respond to this. I had watched it several weeks before because of a documentary I had watched. I remembered as I watched it how as a child this movie always made me feel sad, heavy and like there was some sort of foreboding over me as I watched it. I never understood this, I still do not but I still have the same feeling as I watch it.

I find that odd since I really love dragons.

I had a pet dragon (not real) while we lived in Germany, we went there when I was 4 weeks old until I was 2 1/2 years old. The whole time there I had a dragon, that lived on our balcony and he went with us everywhere and my mother had to open the big huge doors for him everywhere we went because he couldn’t fit otherwise. He stayed in Germany, when we got back to the states he was no longer with me. Maybe he couldn’t fit on the plane. My love for dragons stayed with me all through out my childhood and even now, though I gave them up for a while because “fundamentalists” informed me that they were evil but I believe that they are wrong. When I saw “Puff the Magic Dragon” I thought I would enjoy it, so did my mother but I didn’t it made me sad.

I wanted to know if Daniel would show any sign of relating to Jackie Draper.

I do not know if he did or not but something happened that I have never seen Daniel do before. He was watching the video and when it ended it looped back to the beginning, I heard Daniel say something and I came up to him. He pulled the earphones off and said “I no watch, this mom”. He had tears in his eyes. Daniel doesn’t cry like that, the only time I see him cry is with tears of frustration or pain if he gets hurts but never a cry like this. He had a look on his face that I have never seen, the best I could decipher was fear. I think he was scared. I am not sure, he just kept blinking and had watery eyes. Tears never fell but he was clearly shaken. I held him and asked him what was wrong. He was unable to tell me, I asked if he was scared, he said no, I asked if he was sad, he said no.

I do no think he knew how he felt and I understood that completely.

I dropped the subject and he held on to me tight and I just rocked him. Not much longer he was ready to get down and go about his business as if nothing happened. Then yesterday the same thing happened. He was in the bath with Joshua, I went to get towels and all of the sudden Joshua starts screaming at the top of his lungs. I run in thinking that something horrible had happened, I asked him what’s wrong and he just kept screaming and pushing on Daniel. I pulled him out quickly and tried to calm him down. I found out that he was screaming because the bubbles were touching him and he didn’t want the bubbles to get him. I think I am going to need to pay more attention to Joshua’s sensory needs.

I came back into the bathroom and Daniel had that same face as when he watched the video.

He was saying “Mom I want out of the tub, Mom I want out”. He was blinking, his eyes were all teary and he looked, the best I can say is scared. I don’t know if Joshua frightened him because he was screaming, or if he was just as confused as I was at Joshua’s reaction, or both. I got him out of the tub and held him. I asked him again if he could tell me if he was sad, scared, or mad or anything. He told me no to all of those things and then responded with “Daniel is happy”. So I dropped it. But it is hard for my mind to let it go because my baby is clearly showing some sort of response that I do not understand. I was hoping to be able to help him find out what he was feeling but that seems rather silly when a lot of the times I cannot express what I am feeling.

I think it is a good thing and the fact that he is responding to comfort is good too.

In fact he is seeking it which is new, so I think that is good for him. It could be something to do with sensory. I know that when I get overloaded or I am socially confused I do feel emotional. I am not sure what it all means but as long as he is not shutting down and communicating to me I think it is something positive. I just need to stop analyzing so much sometimes and just hug my kids. That is hard for me to remember, I always want to know why they need comforted before I comfort them. I am getting better at this, I have become aware of my actions. Instead of saying “Why are you crying, tell me why you are crying so I can fix it.” I now just pick them up and ask at the same time. LOL! I am working on it!

It takes time and with a brain that continually forgets these things, I pray for grace over me and my kids.

I am going to write this post solely on my own perspective. I am clarifying right now that I know nothing except my own experiences and how I perceive things. I am not writing to judge others or make anyone feel as if they are not doing what is best for them. I do want to write this though because it may give someone a different view, a new way to look at things, maybe open their eyes to try to see from a point of view that is different from their own.

That is what I do, I want to be challenged in my thinking.

I hope to have my eyes opened at all times to different ways to use my strengths for my advantage and to not dwell on what others perceive as my weaknesses, but look for ways to turn my weakness into a non-issue or find resources to help me with them. They do not hold me back, they just are what they are and I could dwell on them, try to force myself to change them so I am like everyone else or just handle them the best way I can when they seem to hinder me, or they annoy me at certain points in my life. Like having a meltdown because of social or sensory or both overload.

I am sharing some of my views on autism.

I can be wrong but in my world I am not, though I am open to being proven wrong. This is a learned behavior I have not always been so opened minded, when it comes to certain things I cannot think differently, I have tried and some things I find absolutely right and absolutely wrong, others things not so much. When it comes to autism I was absolutely in the mind-set of it was wrong, it was an evil that was stealing my child, it had to be cured, I had to pray it away. I was ignorant, uneducated on the subject, and was only going by the media point of view about autism, since I had no reason to question it before that was the view I took.

When Daniel came along, I knew something was different but I was not quite sure what it was.

Although, I was saying he was different because I was comparing him to what others said or how other children were. Many things about Daniel were not different to me, but I knew they were unacceptable in this world because when I was young those words were spoken to me. “You cannot do that, that is not what people do or say.”After discovering that Daniel was on the autistic spectrum,  I consumed as much information on the subject as possible. (I still do.)  Despite all of the clear signs, I did not really think he was autistic. I mean how could he be, surely he would just stop one day, right?

That is what I prayed for, that is what others implied I needed to pray for, that was what they were praying for.

There was also the hint of  “what have you done wrong to your child?”  Or “what sin in your life caused your child to suffer so?” There was also those who were completely oblivious. (There are still these people) They saw nothing wrong with him, he is just being a boy or a picky eater. Um…No! He wasn’t talking, he didn’t feed himself, he didn’t stay in a room with us, he didn’t acknowledge his siblings, he would scream all day long, he was unresponsive to me or anyone else, and would spin things for hours and I am talking hours. I am just naming a few and they are some of the most common issues found with autism. Though I am one who believes we should accept the autistic mind, I still feel that we need to find a way to communicate, our way to communicate.

I heard myself at times saying “he is in there, I know it. I have seen glimpses of him”.

I was repeating the script in my head of all the doom and gloom stories I had read, people in my life who also had children on the spectrum but would never say it because “they are healed, in Jesus name”, and I had been hit with Jenny McCarthy and her clan as well all over the media. Everywhere. I tell you what though, seeing Jenny McCarthy was actually my wake up call. Nothing against the woman, but I have never had much respect for her and it is very hard for my opinion to change now. I know she is doing what she feels is best, though there may be success stories there are still those that are unsuccessful and that leaves parents asking the questions like, “why didn’t it work for my child?” or “what did I do wrong for this not to work?” I read all of the websites, researched as much as possible what they were doing because they do not share a lot, it is all “inside” information. You have to purchase more or get involved with a specific person to get the help and that too costs money.

The really funny thing is that it is the same tactics that “prophets” in certain Christian circles use.

There is this whole mystery and intrigue and in order for you to gain the full understanding to “help” your child or say “hear from God” you need to buy this, buy that, be sure to give to him/her and because of your obedience to “God” you will receive your answer, healing, prosperity, your whatever your little heart desires. There are a lot of things like that, I find it no different from the medicine men that came around with their tonics, snake oils and promised people that they would be healed or make them a success. Once again just my opinion, not that it is worth much. I will say this has been my experience so that is why I hold this opinion. Bottom line I wanted(want) to do whatever to help my son. As I began really reading from different sides from the medical people, to the holistic, to the parents who are suffering so, to the Autism Speaks people, I found no one knows. WHAT? That is correct no one has definitive answers, no one knows what the heck they are doing! Everyone is using these children as guinea pigs for their own purposes, even if they mean well and feel that they are doing their best, that is the truth of the matter.

It wasn’t until I hit my wall with Daniel, we were getting evaluations and they were wanting to schedule genetic testing, and millions of other tests on him that I reached out to a mother who was talking about her son with AS, being fully who he is supposed to be.

I had started reading Tony Attwood’s book “The Complete Guide to Asperger’s Syndrome”, my eyes were starting to open. The woman had responded to my comment about me wanting Daniel to be fully who God intended him to be, she said “Daniel is who God intended him to be”. I knew this, I felt this but everyone else was telling me that was not true. People didn’t say it with words all the time, they did it in action, half the time I didn’t understand why people said the things they did about Daniel. There were a couple of “seasoned” autistic moms that would say things like “we didn’t let our son hand flip, we just didn’t allow it” or “you know you should come over and see my therapy items and I can show you how to use them properly to help him with not being calm”. He was in therapy with professionals, did she honestly think she could teach me better than a trained occupational therapist who was spending hours with my child and knew him far better than her? I never responded and I got as much as I possibly could out of the therapist so I could do everything available to me at home.

And back to “seasoned” autistic mom, what is so wrong with hand flapping anyway? Who is it bothering?

She never took notice of my strange quirks like holding my hands oddly or touching every pew as I came into the church. What about my constant gum chewing or how when I talk I am moving all around and not looking at her? Maybe she just thought I was possessed. Just kidding! The thing is I knew why Daniel was hand flapping, he was surrounded by 40 some odd kids who were all different ages, dancing and singing, they had the lights dim and had smoke makers and spinning lights, he was overstimulated and trying to get peace in the midst of chaos.  (And I did it, trying to help him socialize! Me-clueless) I would think someone with a 16 yr old autistic child would know this, wouldn’t she know that my child was trying to bring peace to his world that had become incredibly chaotic? I guess not and that is what is bringing me to my point. (FYI, Daniel rarely flaps his hands now as a matter of fact I cannot think of the last time he did, he has found other ways to sooth himself like keeping a spinning toy with him. I never told him to stop.)

We have different perspectives.

It took me a while to get to this place but I felt it, even though other people were making me feel as if I should not accept Daniel the way he was, (is)  I still did. I connected with my son, I recognized behavior in him that was just like my mother, myself and at times David. I looked up as many different therapies as possible, David being a chemist was very apprehensive to go into the herbs and supplements and he has proven to be correct. The studies are not conclusive, there is a lot of quackery out there, no one is regulating the ingredients, and no one knows what it does to a developing brain and body. If you are an adult fine but as a child there is really no way of knowing the effects of pumping them up with different types of prescription drugs,supplements, vitamins, enzymes etc… (Not that I am totally against all of those things.)

I have an issue with those who claim that detoxifying their child has worked!

Really, ok that is fine it is your child do what you like. Give them whatever you like to make them behave the way that you want. Believe me I understand, I have been tempted at times to want to give Daniel something to try to help him during a violent outburst, but I didn’t. I couldn’t bring myself to give my child what could potentially be poison, but that is me. Reading all of those things brought me to a point of saying to myself “how is my child communicating to me?” “What is he trying to tell me?” ” How do I understand him instead of trying to get him to understand me?”  The one thing that really hit home was that I was trying to get my child to do all of the things that I myself as a child went against. I remembered that I was forced to behave in ways that felt wrong and it made me angry. I was being told that I was disobedient I didn’t understand why. I had a different way of doing it and it was more proficient. It was a more effective and an easier way.

I knew that I did not want to be anything like Jenny McCarthy, I didn’t feel right about Autism Speaks, and I wasn’t sold on giving my child medications like Ritalin, I took everything I studied and came up with a plan.

Every place I went to had good ideas, I took the good ideas and I used them. I pumped Daniel’s speech therapist and occupational therapist for as much information as possible. I studied them, I would watch them and ask them “why are you doing that?”. “What do I need to do to help him?”  When our insurance was about to end I asked them for any resources they could give me. The occupational therapist loaded me up, she gave me a ton of resources and told me about books that would help me do this at home. They told me about a gluten-free diet and possibly that was an option to check out. I did, I studied, I went to the library and got every book I could find on therapy, food, and autism. I am not saying that other parents have not done this I am just saying that I did not allow anyone else tell me that I could or  couldn’t do it. I believed I could help my son with his needs the way that he needed it, not the way that others did it for their children.

I see both sides of wanting them to just be fixed and wanting them to be accepted.

I have lived in that world my whole life. I wanted to be fixed and I wanted to be accepted. Through Daniel I found both because I realized I didn’t need to be fixed at all I needed to be understood and the first person who needed to understand me was me. Once I began to understand myself I understood Daniel a lot more. I stopped trying to make him do things, I stopped taking things away from him if I wanted his attention, it didn’t work anyway. I sat with him and as I sat I talked to him even when he was unresponsive. I tried playing his games, I sat and stared at things with him, I spun things with him, I ate things with him, I kept telling him  how much I loved him, I kept asking for a kiss but not forcing it, same with hugs and while I did these things Daniel started participating a little more. I used flash cards for words and asked him to show me what he wanted or what he liked. I was getting him and he thought it was great.

I believe we need acceptance and I also believe we need the therapies to help us be able to communicate  and cope in this world better.

Daniel may have learned on his own to talk more or eventually learn to feed himself but I wanted him to be able to do it so he could be empowered, so he could learn to be an individual. I didn’t want him to do it so I wouldn’t have to do it anymore, though I admit it is very nice having him tell what he wants instead of dragging me all over the house or hitting me, but the joy that is on his face when he says “want more yogurt mom” is awesome. He is happy because he knows his words have power to get things accomplished. He is still learning language but it comes alive for him in music and that is how I have taught him a lot of things to say. I sing them, if he would pull me to the refrigerator and point to the yogurt I would sing, “Daniel wants some yogurt, Daniel wants some yogurt, Daniel’s gonna eat yogurt, Daniel love’s his yogurt.” I do that with everything, I have always done it for myself so why not for my kids.

I have always made up songs for myself for specific tasks, especially ones I do not like such as the dishes.

“I am doing the dishes, yea I am almost done, oh, I can’t stand dishes but I am having so much fun.” Now picture a person dancing and using the dishes as a dance partner and there you have me my whole teenage life. Even now on occasion but David is such an awesome husband that he does the dishes most of the time for me. I will do everything else if he just does the dishes! I have observed Daniel his whole life and I now understand certain things about him like he likes green, he gets agitated on some days if he wears red, he thinks noises like clanging metal is funny, he can make anything spin, ceiling fans are the best thing on earth, and something I discovered the other day is that he doesn’t have a real perception of himself.

I found a video of an autistic child doing some similar things that Daniel has done in the past, but the main thing that he still does is a hum like singing thing that is a mixture of words that I cannot understand.

I showed him the video and asked him to watch it, I said “look Daniel he is doing some of the things you have done, look he sounds like you”. He stopped and stared at the boy and then said “I no watch this mom, I no watch this”. I asked him why and he looked at me oddly then I asked “is he like you?” and Daniel said “I not like that mom, I not like that.” I sat there thinking why would he say that because I know he is like that sometimes and there could have been several reasons, one he doesn’t understand his behavior, he doesn’t grasp the mirroring thing so of course he would not see himself like that, even though I have home videos of him doing the same thing, two he was telling me at that very moment he was not like that because he wasn’t doing anything remotely close to that behavior at the time, or three he doesn’t think he ever does those things and he believes he is just like Ariel and Joshua. I am not too sure about three and I do believe it could be a mixture of one and two. Honestly I do not know I just find it interesting.

As I watched the parents though I was sad because they kept using words like he is not there, we lost him.

There was one scene where the child was looking out the window and they wouldn’t stop calling his name, they just kept on saying it over and over in a high pitch annoying way. I wanted to tell them to be quiet, the child just continued to look outside, inside I just felt like he was studying something out there and whatever he was studying was bringing him peace in the midst of that chaos. I am amazed when the parents act as if they don’t know why their child is behaving this way but their home is full of new things like lights, cameras, new people, the routine has changed because they are filming and they question why the child is acting worse than usual. I saw one scene where the mother was saying he doesn’t talk, he won’t say anything to me, he doesn’t communicate but the camera got a shot of the boy and he was looking at his mother and he was reaching out to her and grunting, he was communicating and he looked as if he was terribly misunderstood.

There are many more videos and documentaries that I have watched and I see the same thing, the child is communicating but not in a way for the parent to understand.

I think maybe one of the answers of breaking the communication gap is to stop trying to get these children to communicate like everyone else. I know others agree with me and there are those who say it but they don’t really mean it. I don’t have any answers but a lot of the people in charge of running this Autism show ( I call it a show because that is what many groups have made it into.)do not have the answers either and I feel that as a parent I am responsible for discovering my child and helping him to find his way of communication, not my perception or anyone else’s of  how he should communicate. I am here to help him discover his strengths, work on those weaknesses such as motor skills for instance. I feel we do need therapy and a specific diet, they have proven to be beneficial for Daniel and myself. The therapies have taught me how to help myself as well. I don’t want myself or Daniel to be fixed I want us to find our way in a world that tries to make us conform to their status quo. I want Daniel to find his voice and learn how to share it with the world even if they reject it.

I will use wisdom and discernment to choose what I feel is best for my child and my personal view is that drugs or supplements are not the answer for Daniel, at least not now.

I haven’t made these choices based on emotion, random readings that have influenced me, or other people, I have taken this on as an experiment, we take all of the things into consideration, rule out the ineffective or possibly harmful things and go with Occam’s razor, what is the simplest answer right now, spending time with Daniel, finding his likes dislikes which are experiments in themselves, change diet and see what happens. Those are the ones we started with and I have found they opened us up to a world of very interesting family fun and new ways to communicate. He is doing well, he has decided to talk more, he is trying new foods, he is writing on days he feels like it, he knows how to spell, he knows shapes, colors and loves to count. All of these things have happened because I got to know my son, that is my journey and it has brought much understanding to my own world.

There is no easy fix to autism it is a great way to learn love, new ways to laugh, see the world in unique ways and it is always interesting.

I feel this dilemma inside, it is regarding how there seems to be two camps those who must have the cure and those who want to be accepted. I fall in between because I really do not know fully what it is like to have a low functioning autistic child for a long period of time, Daniel was low functioning in some areas and at the age of 3 yrs he was at 10 months, like speech and eating. I do know the pain of wanting to connect with your child, the feeling that he will be like this for his whole life, dreams may be gone, but I was ready for that. When I think of all of my children I have no intention of them leaving, though I want to prepare them to be on their own I have no desire for them to ever leave. If they want to stay home,  they can I have always felt that way. I don’t plan on parenting until they are 18 yrs. old and being finished. Understand me here, they are going to be fully equipped to be on their own and they are going to learn about the real world at home but they are welcome to stay, we have plans for all of that but I am not going into it. Anyway that is my thought process so when I hear parents say “is my autistic child ever going to leave the home?” I am confused. Why would you ask that? When I hear a mother say “I can’t go shopping anymore, I can’t just grab my purse and run to T.J. Maxx because of my autistic child.” I get confused.

My children are my life, they are not my identity but they are what I signed up for.

I take parenting very serious and I feel it is my responsiblity to think of their needs, sometimes to a fault but most times I keep a balance. I understand not being able to go shopping most times I cannot take all three children with me and at times there is no way I can take Daniel out of the house but to me it’s just not that important, Daniel is. I take care of myself but things like that are not a priority so when I hear it, it sounds very selfish. David says I need to consider where they are coming from but I find it very difficult. I have a supportive husband, I have a supportive mom and support from some friends who see raising children as seriously as I do so I guess I really shouldn’t think about how other people are or try to figure out what they mean. All I know is for me when we chose to have children, we chose a life long commitment that we knew would take precedence over other things. I don’t know if this is all coming out the way I mean it to, I hope it is. My perspective is different from a lot of other people, even when I feel like we are on the same page I discover we are not so I find myself alone in my thinking. I am not black and white when it comes to the autism therapies or findings but that is how I am different, others seem to be very clear and have all the answers despite the lack of data.

I will just continue to work with Daniel and do things that I see have proven to be beneficial and if new things arise I will research, see what I find and apply things that will be good for Daniel to find his voice and express himself the way he feels the most comfortable.

Today started off on a very bad note. Joshua woke up way too early, he then woke up Daniel and Daniel came into my bed and woke me up. Ariel got woken up as well from Joshua turning on all of the lights and then the cat was awakened by the loud voice of Joshua saying “HEY, NATHANIEL” as he chased him, needless to say we all got up and the only one who was ready for the day was Joshua. He is a very energetic little fellow and we love him dearly, we just wish that he would sleep a bit longer.

I have already been feeling off for a few days so this didn’t help much.

With the full moon all of us have been very sensitive with all of our sensory issues. I have been exceptionally confused by any social interaction I have had and the kids have been very energetic, more so than usual. Yesterday Daniel started going through his cycle that for some reason I am never prepared for, maybe it is because I am going through my own and I am not able to discern things as well. He started talking in his high-pitched voice that no one can understand, except for me and only after I have asked him a million times “What do you want, I am sorry I can’t understand you. Please show me.”

He is also making noise, very LOUD noise.

Spinning wind up toys, banging doors, clanging plastic toys on tiles and glass, dropping metal on the floor anything and everything he can find. All of those things feel like daggers in my ears and they hurt my head so bad it is like icicles being pushed through my veins into my skull. It hurts, ok, it makes my body cringe and I have a hard time being able to focus. Joshua is very loud anyway, he has no idea that he is so loud and I know it is not me, other people have made comments about it too, not in a bad way, but he is. He talks, moves, plays, sings, everything you name it, he does it loudly. Ariel asks questions non-stop and when she gets very excited she has a high-pitched voice that she uses.

All of these things mixed together during this time is just a lot for me to handle.

They are wonderful kids so don’t get me wrong, I am not complaining I am just describing my environment right now. All three of them have been overly sensitive this week, for instance I was giving them a bath, I used the same exact shampoo I use every time and the water from the bathtub to rinse so I know that it was the perfect temperature because I spent 10 mins. making sure that it was, and Joshua started screaming at the top of his lungs “It burns! It’s burning my head!” and then  he screamed “AAAAAAAAAAAAAA, my eyes!” while I rinsed him with the water, which got no where near his eyes because if it does he screams.

All he did was scream, I quickly got him out and held him and was very confused.

Talk about overload, there is still more, I don’t like getting any part of me wet, unless I am in the shower, so when my clothes got wet from that I was having a hard time comforting Joshua, but I did. (Then quickly changed my clothes.) Ariel has been asking questions non-stop and getting very emotional about situations with her brothers. She has had several moments yelling at them to be quiet because they are too loud, as she covers her ears. She has been requesting alone time so she can paint and I have let her.

This week has been just a lot.

I am emotional for some reason, at first I was pretty happy and then I got just blah. Yesterday we spent the day with my mom and it was good but we went to a craft store and then to her house and we were there a lot longer than usual and last night I was just spent. Daniel was bouncing off the walls, he couldn’t go to sleep and I really didn’t want to lay with him because it is so uncomfortable, but I ended up having to, to help him calm down. I have had to most of this week, lay down with him and just hold him.

All of this brings me back to today.

This morning after we all woke up, Daniel out of the blue asks for his light green fan. I had no idea what he is talking about. He claimed that it was in the garage, so I go into the garage and look for it. It wasn’t there, he didn’t believe me, so I took him into the garage to see for himself. After he was satisfied, he claimed it was upstairs. I went upstairs and find nothing but then again I don’t know what I am looking for. I wake up David, I tell him what Daniel is asking for and ask him if he has any idea what it is. He finally realizes that Daniel is wanting a fan that we purchased over the summer. A small hand-held, battery operated fan. I haven’t seen it in months! I look all over the house, everywhere. Daniel was following me and I was feeling the escalation.

I finally tell him that I cannot find it, it is gone.

For quite a while I was the recipient of his wrath. I stayed calm, helped him to his room and let him sit in there for few minutes, for both of us. He wasn’t happy about that but after I got over my overload I went back in and we hugged, he was still upset but I got him interested in his gears so that helped. However, he was not giving up on the fan so I had to go to the store and I prayed the whole way there that they had the “light green fan” because it is a seasonal item. Thank God! It was there, I got a few just in case. I did not want to go to the store because as you can see I was quite overloaded from the chain of events but I had to. I had my list because we needed other things too and I held it tightly as I practically ran through the store so I could hurry up and get home. (David was having his own issues, we decided it was best for me to be the one to go.)

I just want to say how thankful I am for self checkout!

I got home and Daniel was happy. I put everything away as David played with the kids a bit longer before he had to go off to work and I sat at the computer. All I could do was find music to listen to, I just needed that time. I did not have enough time before David went up but he had to get to his work. I gave Ariel an art project, painting by numbers, I gave Joshua some toys and food and Daniel was perfectly happy now that he had his light green fan. I put my head phones on (The position of my desk allows me to see everything so I know it’s ok to have my head phones on.) and I cranked up my music and just let it consume my brain. Then the tears just flowed, I couldn’t stop them, I don’t know why I was crying I just was.

I wasn’t listening to sad music, there was nothing I thought of, the tears just came.

I was overwhelmed with sadness. My mind was filled with questions and wanting to know my purpose. Why is my brain so different? What is wrong with me? Why am I sad? Why can’t I handle these situations? Tears, tears, tears. And many more thoughts and questions flooding my brain. I turned off the music and I got up because I needed to be with my kids. Daniel came running up to me and I just said “Daniel, Mommy is sad”. He looked at me and took his little arm, touched my leg and said “Mommy’s not sad”. I looked at him and said “Yes, I am sad”. Just to reassure him because I was not ready to get out of my sadness.

He looked at me, gave me a hug and said “Mommy’s not sad, Mommy’s happy”.

That was the first time he ever acknowledged feelings and then did something to bring comfort. I was still sad but I was very happy at the same time. The tears came again but for a different reason and Daniel looked at me with concern. I told him “You are right Daniel, Mommy is happy”. I wiped my eyes dry and smiled at him and I asked him if I could have another hug. He gave me a full on hug and he held me for a moment, just squeezing. He then looked at me and said “Daniel is happy”. Out of all this stuff that has been going on and through my meltdown who would have thought Daniel would have a first time moment of recognizing an emotional need and then providing comfort. I am much better now I still feel blah, but I am not sad.

Ariel, my baby girl, had no idea about any of this, she had no idea I was sad because she was quietly painting and to my surprise making me a card that said “Ariel, I (heart) Mommy, I (heart)”.

She brought it to me and said “Here Mom, I made this for ya”. My sweet Joshua had noticed earlier that I had some tears and he brought me some tissue, with a little smile he handed it to me and then went and cleaned up his books for me. My kids are awesome. I so wish that I didn’t have days like this, but then I quickly change my mind because these days are what makes it so worth wild. I know my sensory stuff and their sensory stuff will pass and come again, some days will be better than others but if we didn’t have such intense times we would never have the moments with the unexpected surprises.

I wouldn’t have those days where I say “who would have thought”.

Lately Daniel has been claiming the color green. I have been wondering why he would claim a color. He has always been partial to green, when he was little I noticed that he stayed more calm when I put him in hunter green or slightly lighter shades of hunter green. I also noticed when I put him in red he would be more aggressive than usual. The first time I noticed this was one day when he was about two yrs old he was having a rough day, I ended up having to change his clothes, he was wearing red and I changed him into something green. I thought maybe he had just snapped out of it or something.

However, I noticed the change and I decided to test it out.

Sure enough every time he was in red he was more aggressive and just seemed unhappy so I would put him in green or a dark blue and he would have a shift in his mood. I decided to only put him in deeper colors like burgundy, hunter green, and dark blues. He seems to be ok in light blues and mustard colors as well but not bright greens or yellows. He gets very hyper in those colors. It is very interesting. I did a little research on the subject and found that indeed colors can effect our moods, the clothing we wear can make a difference. I have always had issues with wearing very bright colors or certain patterns. I can feel them, it’s like they are attacking my skin or something. I wore black most of my teenage life. I was depressed but I wonder how much of it had to do with me trying to control my emotions, who knows.

The other day we were in the car and in the back Daniel yells out of the blue “green’s mine!”.

I turned around and said “what?” again Daniel shouted in a very jolly happy tone “green’s mine!”. He started laughing and he thought it was very funny, as we were all laughing he then shouted while giggling “Joshua is blue!”. Hmmm….this got me thinking and then he went on “Ariel is red!”. Ok, of course I had to ask “what color is Mommy?’. He said “red”, “Daddy is light-blue” and “Grammy is green like Daniel”.  I asked him all of the family members I could think of that he knew and he started labeling the girls red and the boys blue so I thought this is strange I wonder if it is just a girl/boy thing but what is up with the green?

I decided to ask him about his Sunday school teacher he had that day and he said that she was yellow and the other one, who was a guy was red and blue.

Interesting, I have no idea what he is measuring or what it is about. I know I have seen colors around people and people say that is an aura, sure I can see that but I wonder what it is really about. David said it could be Daniel measuring the degrees of Asperger’s he sees in a person since he and my mother have many of the same characteristics, David and Joshua have similar traits and Ariel and I show similar traits. But that doesn’t really explain the other people who share the same colors who show no signs what so ever. It still is an interesting concept. It could be that he really likes green, Grammy likes green even though she doesn’t express her likeness for it but he just knows, Ariel and I both like red and Joshua’s favorite color has been blue since the day he was born.

Joshua has grabbed everything blue and claimed it for his, even as an infant.

Daniel could be claiming green like Joshua has claimed blue, we do tend to get Ariel red things, Daniel green and Joshua blue. It could be nothing more than that or he could see people in color. I do that and I have always steered clear of people who seem to have a blackness around them it makes me uncomfortable, I have noticed that those same people Daniel does not want to be around either. Although that could be the vibe that I am giving off and he feels it. Anyway maybe we will find out as he gets older, maybe not but as for now Daniel has dibs on green, just so everyone knows.

I know that people are effected differently by disasters and sufferings, I am one of those people who has to shut down a bit in order to function when something like the earthquake in Haiti happens. When things like that happen, I feel it deep in my soul. I get very confused by other people’s reactions and they tend to make me very upset, especially when they seem to respond lightly to a situation.

I don’t know if I am going to be able to explain this very well but I will try.

There are many things that happen on a daily basis that are just horrible, sex trafficking, child abuse, people being abused by their partners, natural disasters, war, starvation, the injustice of orphans not being taken care of or left for dead, I could go on but I do need to stop because I can feel my eyes welling up with tears right now. It makes me so upset and I just want to do everything I can to help every single suffering person in the world. I do not have a savior complex, I genuinely want to help and I try to, it is wrong and that upsets me. If someone crosses my path and needs something I give it to them if I have it, if not I try to find it. There is something inside of me, that says that is the right thing to do and I must do it. I feel if I have something to give then it must be given. Now I do not give everything away, obviously we live in a comfortable home and surroundings.

That is the point, we have all we need and we see no reason to live in excess.

I need to get back to my point, when something like the Haiti earthquakes happen I am consumed with cries, images of people suffering, children starving, people losing loved ones on and on and I have not read the news, I try to stay away from the stories because it makes me immobile. For instance, when the 9/11 attacks happened I found out when I arrived at work that morning, I went back to my desk and just started praying. I heard people screaming, I saw people stuck under debris, I felt people in despair wondering if their loved ones were still alive, this was all in my mind, I had not actually seen the visuals anywhere. Maybe the images are all derived from past movies or experiences. I don’t know but I see them and feel them. I felt the fear of people not knowing what was going on.

I didn’t feel it for myself, I felt it for others.

I was fine, I was at peace, but my soul hurt for those suffering. I could do nothing but pray and once again I find myself in the same position. The happenings of the damns breaking after hurricane Katrina, the tsunami, the disappearances of children in our local area, it all hits me and I have to keep myself away from media. I can no longer go into a constant state of prayer or give the time and resources like I did before, now I have a family and my focus has to be on them. I am trying to find the ways I am able to help and still be functional and here for my family. During the times that I was single I could devote everything to causes and make a small difference. It did not take away the intense pain or emotion I felt for people in need but at least I was doing something.

Now it is different and I am trying to find my balance.

I am also learning how to teach my kids to be aware of the suffering in the world and how we as a family can help. I am not being too pushy because they are young, but I am able to teach them how to give their toys, clothes, time, and most importantly just be aware that the world is not really just our house and there are so many different people, places and things out there to take notice of.  I know I am a bit over the top with my emotions when it comes to suffering but there is nothing I can do. I feel it, it goes deep into my bones and overwhelms me.

I tend to get very upset when people seem to forget or act as if it is no big deal.

I remember the day of 9/11 (I am using 9/11 because that was the last time that I was really surrounded by people during a devastation) a co-worker came up to me and said “I am supposed to go on vacation next week, they better not cancel the flights.” I sat there in shock, my heart was burning and my stomach was in a knot. We just witnessed two planes crash into the two towers filled with thousands of people, all that went through my head was what they were going through, what their families were feeling and she was talking about her vacation? I had to walk away and shake off the anger I was feeling, I had to think to myself surely this is how she was handling the stress and fear of this tragedy, she just HAD to be doing that.

I share that because that is one of the reasons for my facebook detox.

I cannot handle reading things like that or people pouring over their lives of work and getting their Starbucks and saying things about getting through to Friday so they can party their way into an oblivion. I know I am harsh but it frustrates me, I know there will always be suffering and devastations such as war and natural disasters but I also know when I need to stay away from people so I don’t get incredibly angry while my heart is praying to God above to fix the injustices in this world.

I am putting up several links that we give to or feel that are good resources to helping those in need.

These are just a few we have given to on a regular basis and others we have given as we are able. There are so many organizations out there whatever we can do to make a small difference, it does make an impact. I did not put up environmental sites but several of the ones I have listed also do things for the environment. I encourage you to research and see where you would like to help, what is it that moves your heart search for it and find the best place  for you to make a difference through the means that you feel best suits you. The charityguide gives a great resource of what you can do now at home to make small changes in your everyday life, it also gives ways to get your children involved. I encourage you to not let the things of daily life cause you to forget our world and also stay balanced in your focus. I am working on that one still. Are there any resources or links you would like to share please leave them in the comments. I am always searching for new ways to give back or try to help others.

For Haiti I found these links, we do give to World Vision and have given to Compassion in the past, but the others I thought were good resources and may be ones you would like to check out.

https://www.compassion.com/contribution/giving/disasterrelief.htm?referer=105910

http://www.worldvision.org/worldvision/eappeal.nsf/egift-haiti-earthquake-relief?Open

–To donate $10 to the American Red Cross, text “Haiti” to 90999. The amount will be added to your next phone bill.  The organization is also accepting donations through its International Response Fund: www.redcross.org

– United Nations World Food Program: www.wfp.org

– International Rescue Committee: www.theIRC.org or call toll free: (877) 733-8433

– Doctors Without Borders: www.doctorswithoutborders.org

– Oxfam: www.oxfam.org.uk

– The fundraising drive of former Presidents George W. Bush and Bill Clinton: www.clintonbushhaitifund.org

Sex Trafficking and others

http://www.polarisproject.org/component/option,com_frontpage/Itemid,1/

http://www.worldvision.org/content.nsf/learn/globalissues-stp

http://www.ipjc.org/links/trafficking.htm

http://www.kiva.org/

http://www.charityguide.org/index.htm

http://www.charityguide.org/volunteer/animal-protection.htm

http://www.charityguide.org/volunteer/poverty.htm

https://secure.humanesociety.org/site/Donation2?idb=1975065172&df_id=1387&1387.donation=form1&JServSessionIdr004=go2y27k5d3.app305a

http://www.theanimalrescuesite.com/clickToGive/home.faces?siteId=3