Tag Archives: autism

03/11/11

Autism Symposium (The Info)

I cannot tell you how excited, nervous, anxious and completely giddy I was to go to the autism symposium. I went last year by myself (that is a whole other story that I will share, sometime) and it was a good presentation from all of the doctors, I learned a lot. This year I was excited because they were doing presentations on:

I cannot possibly write enough about these topics or the speakers to give the symposium the justice that it deserves. I will, however, provide as many links and studies that I am able to research in the amount of time I have. There was a strong emphasis on evidence-based resources. Everything they spoke on had studies to back up their information and peer reviews.

When it was an opinion or when other researchers may not agree, it was clearly stated.

I found all of them to be humble and articulate speakers who were passionate in their field. I think that because of that it made the talks more interesting and easy for someone like myself to get very excited about what they are doing and the future of ASD studies and therapies. I want to be clear that what I am writing are my personal views and how I understood each speaker. I stated earlier that I will provide links, as much as possible for others to read, investigate and decide for themselves how they feel.

The Genetics of Autism Spectrum Disorders By Abha Gupta, MD, PhD

WOW! This topic was so incredibly fascinating and confirming. Her research is currently using the state of the art technologies. I was loudly saying things, like “Awesome! Wow! and “David, you have to write about that!”, when she was describing their research and the instruments they were using to study genetics. One of them is from RainDance Technologies. I won’t try to explain how it works because their website can do that. Another that is up and coming is the Whole-exome sequencing, but the current cost is $5000 per sequencing. Yale researches are said to be the first to have a true diagnosis from using Whole-exome sequencing.

I found this article on the PNAS journal.

The basic theme that she continued to emphasize was that there is no clear gene that can be found to be the “autism” gene. Many factors play a role in the hereditary gene pool. Though there may be several genes that have been located in different research, researchers still disagree as to whether these are legitimate “autism gene” finds. Bottom line, everyone with ASD is different and their brains process differently. However, being able to find common genes can help in the future of early intervention and possible medications that could better the quality of life for those with ASD.

With the new technologies, discovering the common genes can be a reality sooner than later.

I was very pleased with the research revealing what many of us say all the time, we are all different, though we may have some similarities. It is true you cannot box in how any of us on the autism spectrum think and feel. I have left out a lot of the gene specifics identified and how she explained that the chromosomes can have only a slight deviation and it can actually be found in a breakpoint in the strand. A lot of technical terms that I do not want to mistake so I am putting up a link to her publications here.

http://www.yale.edu/state/Publications.html

I will end with one of  her quotes:

“There is no one gene for autism, not even a few.  There are likely dozens, perhaps hundreds.”


Research Update: A Quantitative Approach to Discovery of the Origins of Autism By John Constantino, MD

Here was the outline for this talk:

  • Autism is a quantitative trait (review/update)  (MUST READ! AWESOME!)
  • Gender disparity in diagnosis may be an artifact of shift in general population distribution (Constantino et al., 2010)
  • A large share of the totality of genetic influence (not just single specific susceptibility factors) on a given neur0developmental condition may cause other distinct neuropsychiatric conditions (Lichtenstein et al., 2010)
  • Genetic influences that confer susceptibility to disease are responsible for general population variation (St. Pourcain et al., 2010); search for genetic causes may be accelerated by exploring genetic effects on joint phenotypes, or phenotypic association with specific combinations of genetic variations.
  • Some neuroimaging phenotypes may relate more closely to variation in genetic susceptibility than to disease status (Scott-Van-Zeeland et al., 2010)
  • Response to biological motion may constitute a fundamental component variation in the ontogeny of autism (Lin et al., Kaiser et al., 2010)

He shared that autistic traits are continuously distributed in the general population. Through the current studies that are taking place, though there needs to be more, the findings have shown that in families with children diagnosed with ASD, the siblings show ASD traits as well. What his group is trying to research is the tipping point that makes one sibling with a set of traits cross the line into diagnostic ASD while another sibling shows much fewer phenotypes associated with ASD. The severity of signs and symptoms may be different in every individual.

The scale needs to be changed, especially for girls.

The belief that boys are the ones most affected is not necessarily the case, because girls are affected and their symptoms manifest differently. The one thing that is of interest is how girls are more easily able to adapt and be able to function in society while boys have a more difficult time. If that information could be determined than it would be very beneficial to early intervention. Personally, I wanted to stand up and shout, “Some of us are great actresses!” and “Some of us can mirror!” But I didn’t think that it was appropriate.

In case you missed it in the first section here is his article on Autism is a quantitative trait .

I found it interesting that they have discovered that the proportion of uncles affected is overall 3.1%, this is for either side of the family. This is proven to be true for our families. Even though they have not been diagnosed, there are clear signs and stories from childhood that would back up a diagnosis. They have found silent carriers in the gene pool which means that both parents could be neurotypical but be a silent carrier of an ASD trait. Not only for autism but for diseases like PKU, Hypertension, Hirschsprung, Alzheimer’s, and Schizophrenia.

He was very passionate about people getting involved in research and participating in studies.

He spoke about the injustice of misdiagnosis of girls and for woman and men who are adults currently undiagnosed. I really appreciated his effort to educate us on the lack of information about girls on the spectrum and how everyone needs to do better by the girls. He spoke about his concern with the DSM-V proposal and how he and many of his colleges have written their complaints and are trying to get changes made to make it a better criteria. He feels that if the new criteria passes it will cause alarm for many misdiagnosis. That was very good to hear.

In his conclusions he had this quote:

“As we are seeing with the common psychiatric disorders of adulthood, patterns of underlying genetic liability do not map well onto current DSM catagories.” ~K. Kendler, Am J Psychiatry November, 2010


Treatment of Autism Over the Life Course: Critical Components of Biopsychosocial Intervention By John Constantino, MD

While searching for more information I found this article that I found very informative.

http://www.jfponline.com/Pages.asp?AID=7940

He discussed the M-Chat – we had filled this out previously for Daniel.

He spoke about the Early Start Denver Model. Based on this study they feel that children need to begin screening for autism between the ages of 18-24 months. They were able to achieve very good results with early intervention.

He created the Social Responsive Scale: Quantitative, he said that it is not a perfect tool but is a good resource to start with.

He spoke a bit about medications and how they can be beneficial.

Of course, the importance of weighing the risks to the benefits. I was really impressed with his view on making sure all other avenues have been addressed before going down the medication route. He shared a story about a mother who was very concerned with her sons G. I. tract and the toxins in his body, he did not dismiss the problems that can occur in the body of a person with ASD, but he did say to look at everything. It turned out one of the reasons that he was having so much trouble with aggressive behavior was that no one taught him “time-out”. Everyone had been concerned with the foods, GI problems and toxins, and always assumed that was what his problem was. He was allowed to be aggressive because they didn’t think it was his fault. He was taught some skills in control and discipline and showed tremendous improvement.

He discussed some of the medications that are used.

He explained how some have been wrongly used but that others that are used for ADHD can be very beneficial to those on the autism spectrum. I am not writing out the drugs because I do not know enough about them and feel that it would be irresponsible on my part to share that information without the proper knowledge.

He was very clear in his belief that we need more research.

He asked if anyone had heard of the IAN Project, I thought the IAN Project was common knowledge in the autism community, maybe it is but it at the symposium it turned out to be only 5% of us who had heard of it. I think the medical community should really emphasize this information with all of the families that they interact with. He also mentioned AGRE, I know some people may not be into research studies but for those who are these are great resources to check out.

Managing Sleep

We all need adequate sleep. If the person with ASD is not getting adequate sleep, all other means have been addressed, medication may be a necessity.

Ensuring Adequate Classroom Intervention 1

  • Protection from predation-he emphasized how a child knowing that he is being protected from bullies can make a significant change in attitude and ability to do well in school.
  • The utility of 1:1 support
  • Asocial does not equal Antisocial (I say THANK YOU!)
  • Observing for sensitivity to marital discord
  • Attending to “non-squeaky wheels” – pay attention to those who are not making any problems but are suffering in silence.
  • Recognize co-morbidities when present
  • –ADHD (disproportionate hyperactivity)
  • –OCD (disproportionate obsession)
  • –Mood disorder (disproportionate mood fluctuation)
  • –Anxiety disorder (HELLO ME)
  • –Psychotic disorder

Adolescence

  • Autistic Syndromes in the Context of Adolescent Development
  • Advances in cognitive development (Formal Operation Thinking/Anticipating the future)
  • Identify Formation (SELF) Who am I?
  • Redefining “OTHER” (De-throne parents)–How do I fit in the world/universe around me?
  • Defenses
  • Morality (risk-taking/omnipresence)–What do I do with the knowledge that I am going to die someday?
  • Meaninglessness–(creation of meaning where little exists=espousing radical causes)–What does my life mean?
  • Isolation (affiliation for its own sake) –What do I do with loneliness and the idea of being alone in death?
  • Choice (externalizing responsibility, defaulting on decision-making)–How do I choose from the infinite array of possibilities around me?

Ensuring Adequate Classroom Intervention 2

  • Managing the dwindling of social motivation when it occurs
  • Applying academic work to restricted interests
  • Initiating vocational applicable
  • Good psychiatric care can trump “expertise” in autism
  • Supporting/Respecting identity formation
  • Sense of competence
  • Taking responsibility
  • Unique niche (farm/internet/creative arts/performing arts)–domain of “belonging”/ being valued
  • Tolerating awkward attempts to create meaning and assuage fears if being limited (in life span and sphere of influence)

Special Considerations in ASD

  • Urgency of Treatment
  • Crisis level Disruptive Behavior
  • Window of development opportunity being lost
  • Mental Age/Development Level
  • Unique challenges of transition to adolescence (BW)
  • Assenting Cognition in non-verbal AD subjects: Electrophysiologic options?

Harker and Conniolly Clin Neurophysiol. 2007 Nov;118(11):2479-88.

Epub 2007

  • Communicative Capacity
  • The extent to which communication deficits underlie problem behaviors
  • The adequacy of a communication system

I found both of his talks very confirming.

He was giving us studies and information about how we have basically approached our daily life. I found it interesting that he was so passionate about helping girls and families being actively involved in the therapy on a consistent, continual, and inclusive basis. I felt that information he gave was clear and informative and that there was an emphasis on helping people at any age on the autism spectrum but that we can see better results the earlier we react. Of course this is not for every case but it is worth trying.

Pivotal Response Training for Children with Autism: What It Is and How To Do It By Laura Schreibman, PhD

This talk was the most gratifying and confirming to me. The approach that she has been working on is extremely similar to what I do at home. It has proven to be the most beneficial for Daniel. The only difference is that I do not segregate. I have not felt like one-on-one time is the best approach for Daniel. That is one of the reasons why when we would come home from therapy I would take everything we learned and do it with all three of the children. I am not saying that I am better than a professional AT ALL! I am saying that I did/do what seemed natural for our family and surprisingly it was incredibly consistent with her research, for the most part.

I am not allowed to share the information from the packet given, it states that it is for the program only so I will share her work and anything else I can find.

So what is Pivotal Response Training?

Pivotal Response Training (PRT) is a naturalistic, behavioral intervention approach developed by Drs. Robert L. Koegel & Laura Schreibman.

You can read Pivotal Response Training Theory by clicking on it.

Side note: I found this article that she wrote that I thought was good. The Science and Fiction of Autism

She went over ABA therapy, starting with the original form of ABA therapy.

She did say that it was not the best approach but that it was a start. Since I cannot duplicate her information and now my brain is processing a lot I will provide this link to share the brief history and different approaches of ABA Therapy. Applied Behavior Analysis (ABA) If you find that background distracting, this is a good link also, What is Applied Behavior Analysis? Unfortunately, her talk was cut short and she was really unable to go over everything she had planned.  A lot of her presentation involved do and don’t video’s. Again an emphasis on research and more naturalistic approaches.

Overall I thought the symposium was awesome.

I learned a lot and got excited about the research being conducted and where it is heading. For those of us who feared girls will not get their recognition that they deserve and help that they need, I see hope. These speakers are some of the frontiers in the autism research and they are speaking out and getting their message across. What I liked hearing as well is how they saw how each of their own research interconnected and how this can be a huge benefit for the future of autism and many other neurological issues. If all of the medical fields start that line of communication, then we will start seeing huge improvement in many areas.

I gained so much confidence that we are indeed doing the right thing for our family.

Other families may benefit from variety means of therapy and medications and I think that it is great that with genetics research we may be able to help those needs sooner. We definitely have considered and have not ruled out genetic testing but we have no insurance and even most insurance carriers will not cover it at this time. BUT look to the future! In the mean time, what we can rest in is that autism definitely has genetic components, that may or may not be enhanced by environmental factors. It varies for every person.We can be confident that the more people who become aware and participate with research we will find more answers and have clear data to prove the quantitative traits.

Early intervention and most of naturalistic involvement has huge benefits.

The more that the family is participating, turning their home into an environment of therapy as well as schools/teachers and medical influences all working together, the better the quality of life is for those on the autism spectrum. It sounds like a fairy tale, it’s all nice if only it could happen. I know, but I do think the future looks hopeful and that we will see changes in the medical community involving more family involvement and family education. My heart is to see more parents equipped to help their children at home and in their community, so when I hear about those kinds of things I get excited. My take away, hope, better understanding and enthusiasm.

I give props to all of the speakers, they were great and their enthusiasm was contagious.


 



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03/6/11

How Quickly I Change

I was doing so well, ok, pretty well but now I am overwhelmed and anxiety ridden. Off and on Daniel has done a lot better but now I am feeling the aftermath in my own body and mind. I haven’t been able to accomplish much because I can’t think and I am so tired. I get angry with myself because I feel like I have no reason to be tired but I am and it is very hard to force myself to do anything. I decided to rearrange our front room which is part of our school room, along with our bedroom.

I have been wanting new bookshelves for a long time.

I have had my books stacked on top of each other, hidden behind each other, placed on any given space possible so they are not on the floor. Also the shelves that I have been using for storing school materials, craft items and manipulatives, basically collapsed. David has had it since 1997. Some of the other bookshelves we have had since 2004 and they are cheap ply wood types but they have held their own.

Anyway, we found some new ones for $16 and decided to get them.

I did some spring cleaning and wanting to get rid of a bunch of books but I am having a very hard time with that. I am in class today at church. On Weds. David and I are going to an autism symposium. In two weeks one of my sisters and her daughter are coming to visit, we haven’t seen them in about four years, I think. My birthday is at the end of the month. All of these things are good to me but yet I am ridden with dizzy head, fuzzy thoughts, starting to lose my appetite and I can barely read anything. Reading is what calms me, that and writing and both of them I am having a very hard time with. I am not sure what to do about church for our future there and I am just full of anxiety about going this morning. I don’t like this at all.

Part of this is that I just can’t think.

My sister has been emailing me and calling me often and sporadically. I do not mind her calling it just throws me and I do not do well on the phone anyway. She said “I know you are not a phone person and I will not keep you.” but we ended up being on the phone for over an hour because she asked me about Daniel and how do I explain any of this over the phone? I sent her a link that is geared toward children to help them understand what autism is but they really will not understand until they get here. PLUS Daniel is so good at being a sweet little guy when others are around that people think I am making things up. Of course there are certain things that he does and those will be clear but they will not understand his sensory overload or they may not even notice is hand flapping, silly noises or constant spinning. Others don’t seem to notice.

And it’s not that I am just not a phone person.

When I get off the phone, depending on the person it can take me days to recover. I get very excited and anxious. While on the phone even with people I am comfortable with, I shake, my hands start to shake and I can feel the adrenaline pulsing through me. My heart rate sky rockets and afterwards I have to tell David every detail of the conversation so that I can make sure I didn’t say anything wrong or to see if I understood them correctly. It is some serious stuff. I don’t want to do it, I can’t stop it. In the past I tried and I would tell myself how ridiculous I was being, it’s just a phone, goodness! Deep breath. I am just overwhelmed and tired and frazzled.

At least I am not having negative thoughts, I think.

I am doing ok on that part but I am exhausted and then I find myself trying to escape through my special interests. The problem is that when I read things my brain is connecting a billion other things and then it gets all jumbled together in a mass of confusion. I have been trying to read blog posts and I want to write comments but then I think it is too long, doesn’t make any sense or I cannot get a single thought to come together. I am just fuzzy brain. Maybe I will do better and feel a lot better after being in class with the kids today. Our kids are staying home with David, Ariel had a random fever on Friday and it was gone by Sat. but we do not want to take any chances with them getting sick. Also Daniel is just walking on the fence of sensory overload, so church would not be a good thing for him today.

I guess I am done…maybe a little more.

I am not sure the purpose of this post other than to try to get myself to calm down and be able to function a little better. I always feel like I am overreacting with this stuff. I feel like I should be fine, other people are able to get excited and have happy thoughts about having family come, going to church, going to a symposium! I seem to fall into a trap thinking that since I now know what my problems are than I shouldn’t have the issues any more. I know this isn’t true but how do I convince my mind of that? Sorry for my word meltdown, I know I have written a chaotic post but I just had to get something out.

Well I am off to get ready and praying for a clear mind and a not so anxious heart. :-)


 


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03/4/11

Word Meanings and My Freakiness

I have been thinking of conflict lately. So I had to go and read the definition several times to try to gain a perspective. I like to know the origins of words, their original meaning and their proper context. The problem I’ve discovered is that a number of other people do not regularly do this. I was surprised by their responses when I tried to share what I’ve learned about the definitions of words. It seemed odd that others did not want to know the context or proper definitions of words in the Bible by delving into the original meaning and context in Hebrew, Greek or Latin. How could you not want to know the origins of words or their proper meaning?

In my mind I felt that it would bring us to a proper understanding.

I discovered how I am just freaky about this stuff. People find it interesting but they do not want to spend their time looking up words and their meanings. I realized that the culture defines our words and most people are satisfied with that. It is accepted to use the Urban Dictionary as a main resource of definitions. Not many people will spend their time using the Online Etymology Dictionary and think that it is fun and fascinating. Or that the Dictionary can bring a deeper understanding to their world. I am well aware that this could be my own way of trying to make sense of a world that I have a problem understanding. Not many people would enjoy dissecting a passage of scripture using a Greek and Hebrew Lexicon or the Strong’s Concordance . When I lived by myself and then before we had children, I would spend hours researching words. Now I do not have the time but I still do it as much as possible.

I have done this for many words and for many purposes.

What I discovered for myself is that most people have a neutral, commonality for the definition of a word. They do not want to have to think about their words or if they are using the proper meaning and they especially do not enjoy when one asks, “What do you mean by that word?” or say, “I do not know what you mean by that word, please explain.”, along with a full definition of the word meaning and how it is used as a verb and noun. That really isn’t fun for anyone. :-)

My education about how others do not feel the way I do came from David.

Other people would let me go on and on about words and where to look for the proper meaning and the origins or they would cut me off, or get angry. They thought I was being arrogant. David, however would say “I just mean this ____”. And that was that. The problem now is that I have come to think that most people are using the culture definitions of words and are being as direct as David. I am searching for my balance. Basically all I can do is use the words how I intend them and know that others may misunderstand me. I cannot carry the burden I used to with trying to say the correct word for each situation I was in. It is no wonder I shut down a lot in social situations, either I would go into a history lesson about the word conflict or I would be running through words in my head trying to get the correct context and word choice. I still get a little freaky about words though, but I try to make sure my freakiness doesn’t affect others…as much. :-) Evaluating many of the responses with people in my life, I see that in many cases it was from our different understandings of word meanings.

I do have a hard time understanding where they are coming from but now I am taking it from a whole perspective.

I am more aware that people do not feel or think the way I do in many ways. Thinking about all of this made me think of the word conflict. I decided to read the definition and came to the conclusion that conflict is it not necessarily bad. Our cultural reference has made it into a bad thing. I have caused a lot of conflict with believing that another person was using the same definition of a word(s) as myself. I have also gotten very upset at them misunderstanding the words that I use, but I am trying to understand others better.  If anything, I have learned that my own inner conflicts are a good thing because they help me to be challenged, grow and change. For me it is a good thing to be kind of freaky about words, as long as I don’t expect others to feel the way I do.

If I can keep a proper perspective, there is nothing wrong with my word freakiness. :-)


 


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03/3/11

Best For Us?

We have been contemplating for over a year now whether to stay at our current church. We really have limited options where we live. We have tried to participate with our current church as best as we can, but it just isn’t working. We can’t do many of the things that they do because of diet restrictions or sensory issues, I am not even going into the social anxiety. We have gone to some events but then it takes at least three days for all of us to be back to our “normal”. No one is doing anything wrong and we feel welcomed but we don’t fit.

I have been observing changes in our kids for the past several months.

They no longer want to go. At first it was good for them and they liked it. I have been confused by their behavior when they are in class, when we leave, and by them not wanting to go as often as they used to. A couple of weeks ago I was in children’s class, Ariel and Joshua did not want to go, Daniel did and went with me. He was trying so hard to participate and play with kids. However, we are in a movie theater, the elementary students are on the next level in the same theater and it is LOUD! He got past the toys all dumped out on the floor in piles, the noise, the other kids, the TV on, the elementary kids playing X-Box and went to go sing songs. When the video came on he went into panic and asked “Why is it that songs?”

They changed the DVD that they had been using for the past six months.

They had seemed to have lost it, Daniel couldn’t stay, it was the last straw. Even though he knew those songs they were not the ones that I was playing in the car on the way there, they were not the ones that they have been using every week for the past um…forever in his mind and he was done. I took him out in the hallway and asked him if he could go back in after the songs, he said “No, I can’t. It’s too loud.” My mom took him to her house until I was finished with class. After that I decided to wait for the best opportunity to ask Ariel and Joshua why they did not want to go to church anymore. I discovered from Ariel that all of the toys dumped out makes her dizzy. There are certain toys that are too loud that make her stomach hurt. All of the kids talking at once makes her stomach hurt and her head hurt.

She wants to play with the other kids but she can’t because now she gets a stomach ache even before we go.

Joshua agreed with everything she said and they added that the music is too loud so when they get home they are overloaded and act all wild. It’s true they do act all wild and I didn’t really know why. I thought it was those things but I kept thinking in the back of my mind the more exposure they have the better it will get. This is not the case for my guys, they seem to be getting anxiety about all the sensory issues they will have before even going. I still was thinking that maybe if they just kept going that it will all be better but today I read this Including Persons with Autism in the Life of Church . As I read the section  “Develop a User-Friendly Classroom”, I realized that everything they have mentioned to do, is how we have our home set up and it is the exact opposite at church. Everything they suggest our church does the opposite. It is not their fault, being limited in time and space causes the situation to be enhanced.

A movie theater really isn’t the best option for those on the spectrum anyway.

It worked in the beginning, it was actually great. I couldn’t figure out why we were starting to have problems but now I get it. Before they had limited toys, clutter, kids and noise. Now that the church has grown, the piles of toys have grown, the number of children have grown, the different teachers have grown, the sound level has increased and it has become a sensory nightmare. I should know this because every time I serve in there, even though I enjoy it, I am unable to function when I get home. I have to just sit and watch TV because I can’t really do anything else. It takes everything I have to make lunch and dinner so the kids and I have to make it a movie day. If they go with me than they are usually doing their own stim.

Now we are left with having to make a decision.

I have thought about bringing them after music time, when all of the toys are cleaned up and they do the story and craft but I am not sure it will work. They are all pretty set on the script and if they are not there for the beginning then that could turn into another whole anxiety issue. I don’t know, I am torn. Part of me feels like we have to keep going, part of me knows that it is just not going to work, part of me thinks it really doesn’t matter either way because we haven’t really connected to people and at this point in time we are not going to, but then I feel guilty.

None of the kids will wear ear plugs or head phones.

We have tried the weighted vest in class, I’ve tried a sensory diet in the morning before going, going over the schedule, speaking to the children’s pastor, sending a detailed email about his behaviors to help him if he is having problems. I didn’t realize that Ariel and Joshua were being affected just as much. The teachers are not able to help Daniel during class in that short of time, how can they help our other two kids?

I am just feeling quite discouraged and frustrated, at this point I don’t know what is the best thing to do.


 


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02/28/11

I’ll Take That

I cannot even write much but I do need to write something because my mind is just spinning. The last couple days have taken all of my energy. Daniel is having a very hard time and that means several hours of not fun for anyone in the house. I will just leave it at that. I think he is having sinus problems and he doesn’t know how to tell me. He gets upset with me when I do not know what is wrong or how to help him and then he will refuse to let me help him at all. We had a pretty intense day yesterday, he was incredibly upset with me, I tried to give him medicine because I did manage to get out of him “my head hurts”, David had to come down and hold him because he would not let me give it to him.

After we got the medicine in him, David was holding him (deep pressure love) and he laid with David quietly.

They were laying on the floor watching me, Ariel and Joshua play, he said “I love you Daddy”. He said it in his sweet, soft voice and I wasn’t sure if I had heard him right. I asked him what he said again “I love you Daddy”. YES! That was the first time ever he had said that to David. The moment brought tears to our eyes. It may be rough at times and it may take a lot of energy but man I love it when he surprises us like that! He has still been kind of um…not so fun today, but he did start taking his vitamins whole for me and I no longer have to cut them into small pieces, I’ll take that. :-)

I am happy to say that even though it has been rough, I am still at peace.

I may not be able to think very well, my mind is all fuzzy, but I haven’t gone into complete overload or shut down mode. Hopefully, Daniel will feel better. We are all feeling off because we just got a warm front come in and there is pollen everywhere which causes us sinus problems. At least it’s sunny, I will be thankful for that, along with the other things. :-)


 

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02/18/11

My Mom Wished This On Me

My mom has always been quite annoyed with the bazillion questions I have asked her from the time I started talking even up till now. I ask a lot of questions, she has called me “snoopy” since I was a child, my snoopyness is still quite active. It’s not really being snoopy, I think I just want to be prepared. I don’t want to know other people’s business, I just need to know what is going on for my own peace of mind. I would watch neighbors, know all about people and events, I had to know what was in the mail, who was on the phone, when she was coming home, why she took so long if she wasn’t there when she said she would be and demand that she explain to me why the sky was blue. I am not surprised at all that our children are like this as well.

Usually, I am fine with the non-stop questions. (Kind of)

But the past few days, I am just tired of answering questions. Daniel has been asking me questions from the time he wakes up until he finally goes to sleep. Why is the light flickering? Why does the light blink? Why do my eyes have lights? Why is it dark outside? Why does the cart shake? Why is the road bumpy? Why is the sun gone? Why does the moon shine at night? Why can’t I eat cheese? Why did he laugh? Why did he cry? Why did the cat meow? Why does he move back and forth? Why do we move up and down? Why do we have a heart? Why don’t we have batteries? Can I have batteries? Why doesn’t the “e” make a sound in the word rope? Why can’t I play computer all day? Why can’t I have only banana and yogurt everyday?

Those are just a few.

All of the questions lead to more questions and then Ariel and Joshua add their questions too. Daniel doesn’t seem to be satisfied with the answers I give most of the time, hence the more questions. BUT he knows the answers to many of them already. ??? I get a lot of stares and strange looks in stores because Daniel will ask questions all about the conveyor belt, scanner, register etc… I have explained it to him in great detail but still he asks every time and I cannot leave any information out because he knows! Thanks to working at Target I helped set up the front end in new stores multiple times so I really do know how they are all set up and how they work. :-) Other things I have had to research, like the history of fans, what is inside of electronics, why lights make noise, I don’t know just a lot of different things.

I am not complaining but I am definitely overloaded with questions right now.

The other day Daniel had just about tapped out all of my question answering ability and then he got fixated on getting an exercise ball. I got a new one the other day and he decided that he needed one and it had to be green. I tried to convince him to wait but it was not happening, so after dinner Daniel and I set out to get his new ball. Of course Joshua and Ariel needed one too, Target only had one ball in the correct size, it was green, it was Daniel’s. I then had to take him to Wal-Mart with me, I really despise that place for the sensory overload alone. We actually made record time and I managed to answer a billion questions outside and inside the store.

At my complete exhaustive state, Daniel asks “Why did the cart shake?”

I was just too tired and said “Because it was nervous.” He looked at me like I was insane. Then he said “How was it nervous?” I tried to come up with a story about the cart being nervous and then started laughing at myself because I knew it was not going to work. I had to explain to him about the wheels, the road, what the road is made of, why the road is made of rock, why we no longer have dirt roads, how water makes mud, how cement trucks work, I don’t even remember the last thing I answered but I finally said “Does that make sense?”. He said “Yes, it does.”

And for the last two minutes of the drive home it was quiet.

It didn’t last long, we got home and he had more questions like “Why did you say that the cart was nervous?” :-/ Oh, well I have to say that I would have him ask all the questions rather than not, but sometimes….sometimes, I just need the two minutes of his quiet resolution. :-) All three of the kids ask questions and I do think of it as a good thing but there are times that it is just a lot. My mom now says sorry for wishing me to have a child like me, not in a bad way she is joking. It makes me wonder if her wish came true, did it really take three of them to make up for one of me?? Ha ha ha Just Kidding! David may agree with that though, I am a non-stop question asker and I am also a skeptic of people’s answers. I think our kids have this too. Once someone has answered my question I immediately go into “How did you get that information?” or “How do you know that?” David will laugh at my daily internet searches. He says that he can figure out my frame of mind, by checking my history of internet search for the day. I think our kids may be the same way. It’s better than no questions I guess. I secretly like that our kids challenge us.

So I guess I will be happy about that and cherish each two minutes of peace…when they come.


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02/14/11

Asking David About His Perspective

Recently, I asked David to write a post for me. I know he has a ton of work and doesn’t have time to write a post at this time but I asked him so that he could think about it. I had no idea that my request would bring about some answers to questions that we both had or that it would bring healing in an area I didn’t realize I needed healing in.

Here are some of the specifics I asked for:

1. Share how you felt during the time that we were searching for answers about Daniel.

2. How did you feel about the answers we received?

3. What was it like for you in our relationship during that time?

4. Explain how you feel now and what you see after almost three years have passed.

5. What were your feelings during the time Daniel didn’t connect with you at all and I was his sole source of communication and help?

6. How do you feel now that he is interacting with you and reliant on you for things?

Those were some of the specifics that I requested but did not limit to and I told him to feel free to write whatever, those were just some things to consider.

I have on again off again felt the need for David to share his perspective because I feel like there are so many mothers who write but I wanted to know how a Dad felt. There are a few Dad’s out there writing and I like reading from their perspective but I wanted to know my husbands perspective. We never talked about it. During that time was the only time we have ever been disconnected and had arguments. Our relationship from the beginning has just been even keel with each other. We have always just talked things through and understood that we must have had a misunderstanding in our communication. Neither one of us have had relationships like that so our relationship we feel, was a God send and that is a story I do plan on sharing sometime.

We had several contributing factors to the imbalance in our marriage at the time we were trying to find out what was going on with Daniel.

David was the one who actually did research at first about autism. He shared with me and I went into freak out mode. I was with Daniel 24/7, David was not. He did not see what I saw and he was not the recipient of Daniel’s meltdowns. Daniel did not behave the same when David came home from work, he would do some of the behaviors but David was unaware of what our daily life was like until he started working at home. I tried to explain to him but he had not actually experienced it until he was with us all day. The first year that he worked at home we had a basement so he was still cut off from our daily life except for when he took breaks. It wasn’t until we moved into a house that did not have a separate office that David experienced what I had been experiencing.

The problem for me was that David had the attitude that Daniel would grow out of it.

During this time I had no support from the church we were in, about Daniel, no support from my family and what felt like no support from David. I was confused on what to do and what to believe. Even three years ago the web was saturated with misinformation about autism and the lead links were from resources that offered hope of recovery. Here is where there was a lot of confusion for me. David would say he felt like Daniel was going to grow out of a lot of things but he refused the “recovery” paths. There were various groups and organizations that I checked out. I would talk to him about them and he quickly dismissed them or their methods. He would encourage me to do more research to see what I could find, I discovered that a lot of them were snake oil. :-/

How was Daniel going to grow out of it if we didn’t do something?

David would suggest more medically based sites and he is the one who started buying me books or suggested ones from the library to help me to understand. I felt like he didn’t really believe that Daniel was autistic, I thought he was suggesting that I read these things so that I would see for myself but the more I read the more I knew for a fact that Daniel was on the spectrum. Even after seeing the doctors we knew but I felt that David didn’t really believe it. The other day when we talked about this I discovered that it is all semantics. I should have asked what he meant but I was so confused by all of my surroundings, that I didn’t realize that was what I needed to do. Since we had pretty much understood each other before, I thought that I did understand what he meant. The problem was I was operating out of fear and confusion instead of knowledge and understanding. Because I was hearing things through the filters of fear and confusion I was unable to really comprehend what David meant. I just wanted everything fixed and I wanted peace. Obviously, I have learned a lot, I am still am, and have a lot more to learn but new mental filters make a huge difference.

David thought I understood what he meant by his definition of autism.

For me I see a spectrum but autism is a whole. David sees it as separate spectrums. He has placed Daniel in a category that shows with therapy Daniel will become self-sufficient and be capable of leading a productive life. He already decided it and was done. I did not. I hope I explained that right, I am not sure how to word it properly. I was consumed by Daniel and David was not, so my perspective was stuck in the here and now. I was focused on the small details, while David saw a big picture. He would see the progress that Daniel was making because he was removed from the daily life. During this time Daniel was still pretty much like an infant in many ways. I had to feed him, give him his bottle, try to understand what his grunts, hits, meltdowns, hands motions all meant. Daniel was doing self harm, very aggressive, yelling at me, and there would be days that he would refuse to walk, I would have to carry him. He was between two and three years old during this time.

There was a lot going on and a lot of changes were on the way.

More to come in the next post.

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02/5/11

I Found Them, Finally

I have been searching for several months for all of Daniel’s medical records and evaluations that I put in a “safe” place, that I would remember but I completely forgot. I have gone back and forth searching the entire house, garage, under the car, up on the roof everywhere except on top of my storage file box, hidden in my closet, with books and photo albums on top of them. Sometimes I really do not know what I am thinking when I put things in a “safe” place. I happened to find them the other day while looking for something else I put in a “safe” place.

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

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

Here are some of the things I had written down:

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

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

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

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

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

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

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

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

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

He will not feed himself or drink from a cup.

He will not eat anything hard or crunchy.

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

11/2007

Does not hug or kiss

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

He has a toy or bottle at all times.

Stands still or moves against the traffic in group activities.

Shows little or no reaction to pain.

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

Those were for sensory issues I assume.

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

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

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

I am thankful that I have information.

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

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

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

Getting rid of the bottle helped him find his voice.

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

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

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02/4/11

Some Reads

Ok, Ok I am making this quick but I read these two articles/posts whatever you want to call them and found them very interesting. I am still pondering my thoughts so I am not going to write about them, at least not now. But I wanted to post them because I found them very intriguing.

So here they are:

Autism as a Neuroanatomical Variation

How Brains Change as a result of learning

Those are from my “trying to understand the brain” obsession.

I found this interesting as well.

Warning: There are some pretty graphic stories in this next article. I didn’t realize it when I first put it up. In case anyone gets affected physically and mentally by reading things, I just wanted to let you know ahead of time to prepare if you read it.

Alexithymia

Alexithymia is defined as “A condition where a person is unable to describe emotion in words. Frequently, alexithymic individuals are unaware of what their feelings are.”

I want to understand that more so I will be reading about that as well.

This one comes from my “wanting to understand how I process emotions” obsession. :-)


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02/3/11

My “Flaws” That Led to Dysmorphia

Today I read this article The XYZ’s of Body Dysmorphic Disorder (BDD), I read about BDD maybe about a year ago. David was the one that actually brought it to my attention and said that I seemed to have body dysmorphia because of my delusional description of my body on many occasions. Along with my obsessive weighing, not looking in the mirror and my obsessive worrying about hairs, like with my eye brows. I do not seem to show clear traits of OCD so he felt that this was more accurate and that maybe I would find some answers if I researched it. I have a very hard time seeing my body in an accurate way. I believe this started when I was around five years old with my body weight, I talk about that somewhat in my post Aspergers and Anorexia. Body dysmorphia seems to be a trait with my mother and several of the family members on my dad’s side, including the males.

I have an additional “flaw” that people really started to point out as I got older.

I have a birthmark on the side of neck. It is port wine in color and only about an inch of it shows on the side of my left jaw area, the rest of it is about 6 inches along the side of my neck all the way to my head, and it goes into my hair-line. When I was a baby it actually took up most of my neck. It is not a dark purple, some people have asked me if I have had treatments because it does look a bit faded but I have not had treatments. It is really only noticeable when I wear my hair up. As I got older I kept my hair very long so I could cover it up from people. I hid behind my hair for a very long time.

I had people and kids make mean and rude comments to me all of my life about it.

I did try make-up but my sensory issues could not handle it, I can’t stand foundation or pancake make-up on my neck at all. My mom and I discussed doing treatments when I was around 16 yrs old, she told me that she didn’t see any reason for me to do it but that if it was such a source of pain for me that she would be willing to pay for the procedures. She told me to think about it on my own and make my own decision. I talked to some family members and friends and all of them said that it wasn’t noticeable to them and it didn’t make me ugly. I wanted so much to believe them. I based my decision on the fact that I felt like I was the way that I was supposed to be and if I were to go through treatments, it wouldn’t be for me it would be for the acceptance of people. I decided then and there to never consider it again.

Even though I made that decision it was still hard.

People can be cruel. Since I had long hair I would always put it on top of my head in silly styles just to get it up out of my face, I would forget that I even had a birthmark. Though, I purposely would lay out in the sun and get as dark as possible to ensure that it would look lighter. Then while working, minding my business or being out and about at a restaurant or store, someone would say “What is that on the side of your neck?” “What happened to you?” “Did you get burned or something?” “You know you can have that thing removed.” All kinds of comments that for some reason society feels the need to say to someone who has a difference. I have to confess on the day the woman told that I could “have that thing removed” I looked right at her and said “Well then I would be just like you. I like me for me.” She was taken back and stumbled on her words trying to sound like she didn’t mean them offensively. I am sure she meant well but on that day I was amazed at the words that flew out of my mouth.

On that day I actually stood up for myself.

Even though I didn’t feel that I should have my birthmark removed, I still would be affected by the rude comments people would say. But I did not let it stop me, one year I got fed up with having long hair, it was too much to take care of, so I cut it all off  up to my jaw line. There was my birthmark out and open for all to see. I lived in a city where people didn’t much care, it was too big and too diverse for most people to notice my birthmark. When I moved back to my hometown, to various other cities that were quite a bit smaller, including this one, people were quick to point out my “flaw”. By this time though I would just be polite and tell them it was a birthmark and smile. But I still felt the impact of the pain, the hurt. It still happens and people close to me don’t think anything of it. David and I will be out and someone will stop and stare, gawk and I just look at them like “WHAT?” on some days I have said it out lout, I admit.

David has no clue what is happening until I tell him.

Same with my mom, my sisters no one ever thinks of it but they have never been ridiculed or pointed out for having such a flaw. They don’t see it, they see me, it is part of me and to them it is not ugly or a flaw. As I am writing this now I am getting a bit teary eyed, I haven’t thought about the pain and the fixation that this had caused me with my appearance. Reliving those experiences are hurtful, I would like to say that it stopped into my adulthood but unfortunately adults still say the same things as the kids did in school to this day. The difference now is that I understand how that and my weight were triggers for me to have such a jaded and inaccurate view of myself. As I read over the article I realized how much I have grown, though I still do not see an accurate view of my body or even my birthmark, I intellectually know that what I see is not true.

I have been able to overcome my eating disorder.

I have also been able to overcome a lot of my dysmorphia thinking, through applying cognitive behavioral type therapy at home. I have changed my way of thinking about all of this and David has built into me to help me have a better self-image. He hasn’t told me what to think he has just been a positive reenforcer during my struggles. It helps that he lets me talk about just whatever. In this particular area though he told me that I needed to get a positive self-image for Ariel and the boys. The things that my mom says about herself are not true, she still does it and it has been damaging to me and my sisters about our own self-image. She is working on it and we have been talking about it because David made a very good point by helping me to realize that if I did this in front of Ariel she could have the same problems. That made me more aware of what my mom says around Ariel as well and I explained it to my mom. She has gotten more receptive in this and doesn’t want to influence Ariel in this either.

Though my mom tried to make me confident in who I was she diminished a lot of it with her own self-destructive talk.

The obsessive weighing myself has stopped, I am letting myself be at a normal weight without doing negative talk, I am not concerned with hiding my birthmark, and I am feeling pretty good with where I am at. I have come a long way in this area in the past year and I hope to continue. Dysmorphia is not about vanity, I am not sure how it affects someone on the autism spectrum. I believe the reasons for dysmorphia may be different from other people though. My whole reasoning for hiding my birthmark was so I would not upset others. I felt bad for making people feel uncomfortable. When it came to my weight, the first reason was to make my boyfriend happy or my mom proud of me for being skinny. My mom never put those terms on me but in my mind her concerns about weight and image meant that. The boyfriends who said that I needed to lose weight were trying to control and manipulate me. My eventual obsession turned into my need to try to control my own world. My weight was the only thing I could control solely.

I don’t know if others have had these issues or not but I felt such a release and sense of achievement from reading that today that I had to write about it.

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