Behavior and Communication

Many a child that I have been around speak in many different ways. Autism makes a child even more unique. Before you can teach a child, you have to get to know them. You have to get to understand how they communicate. You have to understand their heart. All three of my kids act out when they are being misunderstood and having a hard time communicating. Most kids with autism take a very long time to process what is happening around them. If you continue to ask them questions or demand answers, they can shut down. They can also act out in the class because everyone has moved on and they are still back at step one. Every child with autism learns differently. Some learn orally. Some learn visually. I always had to have everything combined. I had to hear it, see it, write it and then break it down, for me to understand. That takes a lot of time. It would take me hours and hours to do my homework when it took my college roommate an hour. I had to learn patience very young. I had to learn that it was okay that everyone understood when I did not. I had to learn how to ask questions. I had to learn how to self-advocate. I had to learn how to learn. That is a lot for a kid to learn. Please be patient.or they will feel self defeated before they even get a start in life.

I’m back!!!

It has been years since I have posted a blog. It has been a long time since I have written like this. I changed my url too because I am just a different person that the one that used to write on this blog. My world has changed in so many ways that there is no way I could be that same person.

So many times I have went to my computer to write and there is always something that gets in the way from me being able to write. for those of you who have not read any of my writings, I live and breathe autism. LOL. I guess you could say my house is Autism. And my brain is Autism with a touch of FASD. If you do not know what that is, It is Fetal Alcohol Syndrome Disorder.

So, this is how it goes. I have Autism. I have custody of my three grandkids. They all have autism. I also work at a school for kids with autism. I have written about autism on Autism Speaks and random blogs. I have also spoken in many venues about autism.

Even with this said, I have never met two people with autism that act exactly alike. It kills me when they test kids or observe them in the schools. Despite many doctors or neuropsychologists opinions, if the school does not feel the child has autism, they say NOPE! Does not matter if a doctor has said it, their autism does not affect them in an academic setting; therefore, they do not have it.

My question is, How do they KNOW THAT? They do not know what their learning would be like if they had their sensory issues addressed in the class. They do not know what their grades would be like if all of their needs were taken care of so they can be their best in the classroom.

I am not a doctor. I am not in the medical field at all. But what I do know is Autism. I live in a house with four people on the spectrum and one neurotypical. Well, like I tell everyone, You got something. Even though they do not have autism, They got something. LOL.

One of my speeches is entitled, Stuck in Success. I perseverate on how to make it. I do not give up. No matter what is thrown my way. So, like I say in a poem I have written, pull up a blade of grass, sit down, and get to know me.

I’ve packed my lunch and I’m ready for the world

I’ve packed my lunch and I’m ready for the world is exactly how I felt when I left my place, yesterday. But not an adult, ready for the world…more like my five-year-old self was ready for the world.

Let me explain. I never do out-of the-ordinary things without people. I have a couple very trusted people that I go to most places, with. When my daughter or my friend is with me, I’m good. I can do just about anything. I can live a fairly normal life.

I can get to work and do my job. I can get home, but anything different than that, I normally have one of them with me. My daughter went to college. She worked with me and she lived with me. She went shopping with me….she is no longer here.

I have Fridays off from work. I had to get an echeck for my car and then get a paper for the plates…hint hint…I got a new car. Well, used, but new to me. So, the day started with me having a relaxing morning. Trying to take my time to prepare to do these things.  I walked out of my place and I literally felt like I was five years old and had my lunch in my hand and put my shoulders back, ready to conquer kindergarten….or my world. I didn’t feel any older than that, but I knew what I had to do.

I was half way down the road and realized my lifeline, my phone, was back at my apartment. So, I turned around and went back and got it. I am lost with out maps. I plugged in where I was supposed to go. I got to echeck successfully. I was lost talking to the guy and he was lost talkign with me, but the job was done. Got the paper I needed.

I then went to get my car looked at. Drove up this guy and told him what I wanted, he said you have to make an appointment and told me what to do. “I heard you have free car washes for people who bought cars, here.”

“Yes,” he said. “Pull around back, you can’t miss it.”

Sure enough, there it was. I pull around and watch the car in front of me. There is a guy there and I notice that he is directing the cars in, to be washed.

It’s my turn.

I pull up. He directs me in. I pull in to the front of it and stay there. He yells in my car, “You have to pull up. You have to drive through.”

So I start to drive in.

“Get you hands off the wheel. Don’t steer.”

I take my hands off but the water and the washer thingys were going all over, the only thing I could do was cover my head. I was stuck! The guy was yelling at me so I got to the point where I could just drive through, very fast.

Phew

On the other side.

I was in tears and on complete panic, but I made it.

I drove to the BMV to get the paper I needed for plates, then I went home.

Didn’t move the rest of the day.

Home was a good place to be.

I’m five and ready for the world. Yep that’s what I am.

Words!

Out of all the things I have read on Autism, the one that has mirrored me the MOST is The Reason I Jump: The Inner Voice of a Thirteen year old boy, by Naoki Higashida. I have not gotten very far in the book, but I have to say that I have NEVER read anything that is exactly like me!! I mean, I read Temple Grandin and I’m like yea that fits that fits. But I have to say I could have written this book. The hardest things I have ever had to deal with is communication. One of my favorite things to do when I was a kid was do theater. The reason was, I had a script. I knew what to say, when. I didnt have to try to figure out what to say. The words were given to me. Conversations are THE most draining for me. I often times feel like I’ve run a marathon after a five minute conversation. Just trying to keep up. It feels like the people I’m talking to have had a head start and I’m trying to catch up the entire race. When we are all done, I’m not sure I even understood all of it. The biggest obstacle is to get the words out and hopefully the other person did not get that I struggled through every word.

 

Here are Naoki’s words. as soon as I try to speak with someone, my words just vanish. Sure sometimes I manage a few words…but even these can come out the complete opposite of what I want to say! I can’t respond appropriately when I’m told to do something, and whenever I get nervous I run off from wherever I happen to be. So even a straightforward activity like shopping can be really challenging if I’m tackling it on my own.

I have always wanted to communicate. I think that is one of the most basic needs of any human being. It is one of THE hardest things for someone with Autism to do.

Not being able to talk means not being able to share what you’re feeling and thinking. It’s like being a doll spending your whole life in isolation without dreams and without hopes. Sure, it took a long time before I could finally start communicating via written text on my own, but on that first day when my mom supported my writing hand in hers, I began to acquire a new way of interacting with others.

Just like Naoki, I figured out ways to communicate. I drew. I wrote. I would write in poetry and in notes to people all the time so they could understand what I was trying to say. I work at school for kids with Autism and there is a child we met who learned the alphabet in sign language, on his own, so he could communicate.

That is SMART! People with Autism are SMART. We are in there even though we do might appear that we are not. People talk around me. I have been around people that completely ignore me because I am quiet and they converse as if I’m not there. I have to admit, if there are a lot of people in a room and many people talking, the chance of me figuring out how to jump in, is pretty slim. BUT if someone gets me one-on-one, I will talk.

I ‘gap’ talk. What that means, is there are a lot of gaps in between my words at times. I know people with Autism who have gaps IN a word. It’s just processing.

The words we want to say and the words we can say don’t always match that well. Which is why our speech can sound a bit odd. I guess. When there’s a gap between what I’m thinking and what I’m saying, it’s because the words coming out of my mouth are the only ones I can access at that time. These words are either available because I’m always using them or because they left a lasting impression on me.(Naoki)

When I try to speak, there are so many words that go through my mind at the same time. Most of the time, I get out the most simplest way of saying it, even though my mind said it completely different! It is so frustrating.

Naoki states, The reason we need so much time isn’t necessarily because we haven’t understood, but because by the time it’s our turn to speak, the reply we wanted to make has often upped and vanished from our heads. Once our reply has disappeared, we can never get it back again. What did he say again? How as I going to answer his question? And all the while, we’re being bombarded by yet more questions. I end up thinking, This is just hopeless. It’s as if I’m drowning in a flood of words.

WORDS is the most complex thing invented. They come in hundreds of languages and there are millions of them. There are slang words and made-up words and they all have their own meanings. The same word spelled exactly the same way, can have two different meanings. It is sooo complex.

Having Autism in an NT world of words. Ugh! But we are trying. it’s just exhausting at times. Just work with us. We are trying to communicate.

 

 

Communicaton

Communication is probably one of the hardest thing I have to do in a day. Trying to get across what I mean. Explaining a thought. Talking in a series of words to get across a point. Creativity is a way to overcome that hurdle or I guess you could say, just finding another way of communicating a thought. 

I know, often, that we do not look you in the eye, but we say so much with our eyes. 

I know that we often times can say in an artistic way  what we cannot say with our mouths.

I chose photography and drawing. I would draw and draw when I was a kid closed in my room.

I would also underline a lot of words in books to get feelings across that I could not begin to say with my mouth. Books helped me to understand feelings. It took abstract concepts and helped me meaning to them with concrete examples.

Watching others helped me understand communication. I watch others communicate and how they put thought to voice. Which, I still am not good at. I watch my daughter put words to air as if it is nothing. She is so articulate with her voice. I tried to explain a television show hte other day and it was like broken english. Hardly understood. My thoughts were so broken, she picked it up and filled in all the gaps.

I’m thankful for those around me who can do that, but I can find other ways to communicate.

Thanks for listening. We are talking.

A Spectrum of hopes, dreams, and possibilities

FASD/Autism. I wouldn’t change it for the world. I’m more enthusiastic about life with it. I feel things so deep. 

Sometimes, too much…lol. I was told at such a young age that I had disabilities that could rob me of even a

high school education. But, as I sit here with a master’s degree under my belt, working as an assistant director

in a school for kids with Autism, living my dream, believing more and more in myself every day. The possibilities are endless.

YOu can do it too. Don’t let anyone tell you different!

My dad

My Dad! I was 11 years old when he passed away, but he has been THE force behind everything I do. He was not my biological father. He adopted me when I was a baby. From the moment he got me, he loved me. He was an amazing man. I only had him a few short years, but he had such an impact on my life. Never missed a swim meet. He was my biggest cheerleader. When he found out that I had significant brain damage as a kid, he rebuilt our entire basement to have helps for me. He built a balance beam to help with spatial balance, he built me a chalk board because I had to do eye exercises all the time. He built areas for me to work on things that would help me. I got a piano to help with eye hand. I got in swimming to help with what they would not call metldowns, but swimming helped me immensely work all the muscles and get that build up of frustration, out. I really think that was why I was as good as I was. I just put every ounce of energy I had in that pool, and it worked…lol. He sat at the end of the pool, every race and wrapped that towel around me when I finished. When he passed away, nothing mattered as much and all the helps, kind of went away. It just did. Not anyone’s fault. Adopted mom had to work and she had a very taxing business…lol…literally, she owned her own tax business. And she just worked many, many hours which left me home, alone, most of the time. I could no longer go to the insitute that I was going to for helps. Just everything was dropped and my sister was given away to the system. (Long story–one I dont even understand) But this tribute is to my dad! Try to take someone on the spectrum and have them lose THE most important person in their life at such a young age. It was a tough one. I know, for a fact, I was never the same again. I have recovered and become strong. I do a lot of what I do today because of who he was for me. I often ask myself would dad want you to give up? NO! He would not. He was a WWII veteran whose ship was bombed outside of Japan and he was missing for days. Obviously, he lived through that, but the Navy ended up paying for all four years of my college for the impact that the war had on his premature death. I wrote them a letter for the War Orphans Scholarship and I won. So, in a roundabout way, my dad did end up paying for all 4 years of my schooling so I could get an education. I was always so proud that he was my dad. I would wait for him to come home, every day, after work. I would hide. He would have to find me and I would jump out like it was the first time to ever meet him…that was the way I was. I greeted him like he was the most amazing person every day. 

The last day of his life, he kissed me good bye in the morning, went to work. It was a Tuesday before Thanksgiving. i went to school and swim practice. A neighbor picked me up from practice. I asked where they were. Neighbor said that my dad was at the hospital, just some tests. Nothing bad. He would be fine. She had me go to her house and I hung out there until a call came for me to go home. She dropped me off and I walked in to a house full of people crying. My adopted mom was sitting on the couch. I said, ‘What’s wrong?” She said, “your dad.” I said “Is he sick?” she nodded yes. I said, “could he die?” she nodded yes. I asked, “Did he?” she nodded yes.

That was it. I ended up the rest of the night in my room. I was pretty much a quiet kid that really just did not talk or share how I felt. When things like that happened, I shut down. I really did not have an adult come around me, like the entire neighborhood came around her. It is interesting how the quiet one in the room is really not paid attention to. 

I do not remember my sister even being there then. Have no idea where she was. I still do not know. (Again, long story) 

I miss him. It was so long ago, that i cannot believe that I still remember sitting next to him on the couch every night after work–just him and me. Just chillin. In our own quietness. It was our time.

Dad–I miss you and I love you!

What a diagnosis does

A diagnosis.

what do you do with it?

People have said it’s a good base. 

true. It is a place to start.

Then what?

I mean it doesnt change who I am or what I am doing. I’m still the same Ann I was the day before I was diagnosed.

it does confirm what many have told me and what I have thought for a very long time.

It does confirm that I am not faking anything. That is really just a side thought. But it is like a confirmation to me that I really am who I am. I really do have these things and I’m not faking it or making it up. I don’t know why I needed that, but it was a validation. Every single avenue of the testing that they did, even the cognitive part pointed to Autism with their being more underlying cognitive stuff that happened in utero (FASD). 

I think the people around someone with Autism or FASD need that validation as well. To hear from a professional that “no, your kid is not doing this to get out of things. no your kid really does have cognitive and sensory issues that need to be worked around.” I think that helps.those who are with that person on a day to day basis. I think it helps confirm their thoughts about their loved one. I think that is necessary to get the helps at school and in therapies. All it takes is that one person to say YES you have Autism or YES you have FASD to get the IEP’s in place. to get all the helps in place for that child/adult that was needed and was not being addressed. The adults can rest easier now that their child/loved one will get the helps that they have been fighting for with no success. 

It gives answers to questions that loved ones have had for years. why does my child not want to play with the other kids? why does my child not like to be held or touched like other kids? why does my child not look at me in the eyes?

These are just a few of the questions that make one understand.

Now that the person has the diagnosis, they no longer have to be forced to do the things that are considered…’normal.’ 

I know for someone on the spectrum to look people in the eyes is hard if they are trying to hear you at the same time. So, that gives the okay to say ok, be who you need to be to be your best. Be who you need to be to function in this neurotypical world. 

We are forced to conform all the time and it gives us permission to opt out of that what they consider ‘normal behavior.’ and allow us to be who we are in our autistic or fasd mind.

trying to force us to act like an NT can be pretty damaging and all it really does is create a world where we are not able to be our best. the diagnosis allows us to be who we are to be are best. It provides the helps and the ‘excuses’ if I can use that word…to be who we need to be in order to operate in a world that does not cater to people on the spectrum.

It helps teachers and caregivers to know what to have in place so those on the spectrum can be their absolute best.

It helps me know that maybe down the line if I do need to have more helps, that they might be available for me. That is a safety.Forcing us to live outside of those safeties does not allow a great productive environment for us and it actually works against us. We can be amazing workers.We have the ability to make a lot of money and soar in life as long as the right things are in place to allow us to have our sensory breaks, or self-regulate, or not be forced to socialize at the work parties or give a speech that could send us into a meltdown. it gives us the right to be what we need to be to be our best. 

My daughter is going off to school soon and I will not have that help in place that I have had all of her growing up. Just having that safe person with you that you have a great relationship with, regardless of age, adds another brain to the equation when at the store, etc. 

I know I need the helps now that I instinctively had in place. Having a neuropsychologist confirm that for me, I think, allowed me to be okay with that fact. I always felt that I was a bother. Not that I dont now…lol…but I do feel like now its okay for me to ask for the helps.

It’s like i’ve been given that permission slip to have Autism and FASD and it be okay. I will always push myself. I will always force myself to go beyond what I can do. I dont need anyone to stretch me because I am already do that myself every single day. Just going outside and to work and to the store and even going outside of routine is stretching. the only thing others need to do is just have those supports in place when we go outside of our comforts. Just stand there while we go into areas where we are not as comfortable and it provides an immediate safety for us to stretch even more. 

We do know our limits. We do know when someone is asking us to do something beyond what we can do at that moment. Maybe it gives us the permission for others to really listen to what we are saying. I know we dont say it with our mouths necessarily. But our entire bodies are telling you what we want and what we need. 

I know if I can do it. I will put one foot out and I can tell by my own cells in my body if they are going to be able to handle it. Sometimes, just putting the foot out was about all I can handle. Maybe next time, I might accomplish a full step, but just know that most of the time, we are doing all we can to stretch.

I want to be able to be like the others in the room. I want to feel at ease when everyone is socializing. Sure, I’m quiet and I stand back and I dont talk, but that does not mean that I dont have things to say and I dont want those people to talk with me.

A diagnosis maybe helps others to know their roles in our lives. It helps them to know to come to us instead of force us to come to them and make conversation. it allows others to know that large groups are not the best, but we are great one on one.

If someone has a disease, they go to a doctor, they are diagnoses and then a plan is put in place in order to make that person better. 

Better? is that what we are striving for with Autism? with FASD?

Well, yea. I think that we can get…better…in that we can learn how to operate in the NT world one step at a time. We can learn ourselves to the point where we know–and I believe we know instinctively–what we can handle and what we can’t. But what a diagnosis does is allow the people around us to know how to act upon our actions and how to do life with us. 

Don’t walk in front of us trying to force us to go your speed. 

Dont walk behind us trying to pick up after us or watch to make sure we get there.

Just walk with us. Do life with us at our pace. We will get there.

And breathe…

We are fine!

it is you that isn’t.

Because we are not living like others in the neurotypical world, you think we are the ones that are messed up…lol

We aren’t.

The only time we arent is when we are forced to live outside of our comforts. Again, we do know our comforts. We know what we are capable of. We know what we can do and people on the spectrum really are the hardest workers I know. they will do anything to please. We don’t have that neurotypical gene in us that wants to slack…lol…

So know we are giving our all. 100% of who we are all the time.

Different is just that…different.

I heard someone say that we are not disabled we are differently-abled. That’s perfect. We just operate differently. so let us operate the way we do instead of think our way is wrong and that it needs to be like others…just look at it as we are fine. we are just operating where we operate but we will get there. 

Have you heard blind people who were blind at birth say that they operate in this world fine because they have never seen. They have always been this way. it is all they have known. they have instinctively gotten around this world just fine. just different than a seeing person.

That is the way it is for people on the spectrum. We are seeing ourselves around, the way we instinctively need to, in order to do our day.

Maybe this diagnosis allows others to let us do what we need to and not make us conform and BE neurotypical…

 

Results

How do I say this? Yesterday pretty much knocked the wind out of me. I can do two things with it. Either I can let all that the neuropsych guy said and let it take me down for the count or I can continue to do what Ive always done and let it empower me even more. I prefer to let it empower me. He even said “hats off to me with all I have accomplished.” I have proven even more to myself that most people would not have accomplished all I have with my brain. I just never saw that ‘not’ doing it was an option. When they told me I would not graduate high school. I just said watch me get a masters degree. When they told me I would never hit a ball. I said i will practice until I get homeruns. I could go on and on. I have always found a way to compensate. If I cannot do it this way, I will find another way. I am one determined mother ______. if I can say that. I am having a little bit of a hard time today. I never expected him to say a couple of the things he said. Trying to process.

I looked up where my IQ falls. It basically described me to a tea. I was surprised. This is what the definition of it said under the IQ I just found out I have. Above the threshold for normal independent functioning. Can perform explicit routinized hands-on tasks without supervision as long as there are no moments of choice and it is always clear what has to be done. Assembler, food service.

I know that as long as my day is without choice and everything is spelled out to me from the first moment of my day until the end, I am anxious free and fine. Give me choice and give me a day where I am just supposed to get thigns done but it is open ended…I will accomplish nothing at all. So…it is exact. That made me even sadder. I thought I had a higher IQ. But the thing is they figured in my working memory which he said never developed and my adaptability or whatever that is never developed. So with all that said…he did mention disability.

You know, I’m a tough one. I will never ever give up. When he showed it to me, I was not really processing it. I didnt even hear the number he threw out there for my IQ. My friend, who went with me, mentioned it later in the meeting and I said, “huh?” I said thats my IQ? thats really low.

I looked at his paper which showed in a nutshell that without a doubt 100% I have Autism and some of the stuff that was in there with all the cognitive stuff, etc. could have happened in utero. Hence what I thought with the FASD stuff. But he did add say that the social component does not have to always be there to the extent that I have it with ASD. That the social anxiety with my ASD is so off the charts that he actually gave me that diagnosis as well. So,…this is another day.

Just a day.

I said to him…well all I want to know is how I make this all stronger. He said give me one thing you want to work on. I said my memory. I have like a very low ability to do short term memory. After repetition I can retain things a little better. that is why it is harder for me in the reading, as well. But I have a great word knowledge…I knew that…lol…and I can write…woohoo….

But the ability for comprehension and retaining I do need to work on so he said I need to work my brain because it simply did not develop. The frontal lobe part of my brain did not develop wehre I can bring forth information, etc…

Anyway, he said go to luminosity.com.

You bet I will.

I will do whatever I can to make my brain stronger.

This was harsh news, but news that I know will just make me stronger.

And I said to my friend, it just proves how strong I am. How I was able to accomplish these things that I never should have been able to. I just found another way.

And I’m not going to stop.

just another day.

Embarrassed disappointed sad, BUT determined

The worst thing that could have happened at work, happened. What makes it worse, is that I let myself down and feel that i was not my best. I was put in a situation where I had just a couple minutes to respond to having to speak to a group of people. I will push myself as far as I can, but I do know this lmiitation is HUGE!!! My mouth will go out the window, every time! It takes days, weeks,, even months for me to prepare to talk in front of groups of people. I knew my mouth was shutting down. If anyone knows a shutdown. It is awful! Iti is liek the life is being sucked right out of you. It happens at home, but when it happens in public it is so embarrassing…BUT at work???????

Never!!!

I am the most professional person! I mean, I will work like a marathon runner to get through my day without meltdowns or shutdowns. But when asked to do it, I completely lost my voice. So, I knew all I could do was leave. So I did. Went into the other room and just started to shut down. I think I was more disappointed in myself because I give my ALL so this never happens and it did. One other time, I was asked to speak to the large class and I lost my ability to speak, but it was not detectable by others, really.

I knew I was not going to be able to speak, but when I was asked to…nothing! I had no idea what to do.

It’s not rebellion. If anything, I cried because I was unable to do what I was asked to do and I will do everything I can to do what I am asked. I never want to let people down. I was disappointed in myself and sad that I had let my boss down.

Fortunately, my next period was set up that I was able to bring myself out of it after I sat there for awhile trying to get my mouth to work, etc.

On shutdowns, I have gone to complete limp. Just staring. Just a heap of nothing.

I was able to make myself stay (in myself) as much as I could and fight to come out of it and do the rest of my day.

I’m embarrassed, mostly.

I came home…and cried!! My friend met me at home and just held me while I cried. I fell asleep.

This stuff is exhausting.

I always try so hard to find the best out of every situation.

I guess this would be that I didnt let myself shut down all the way. I came out of it and made myself still have a productive day.

Tomorrow, I go and find out my executive functioning results from the Neuropsych.

I’m nervous. Just the finality of whatever he will say.

no matter what it says, I am still who I am and still the hard working individual who compensates and find ways to make things happen in spite of the disabilities.

Regardless of what it says, I will wake up saturday and be my best.