Sorry it has been awhile since we have wrote, it has been busy. We have been spring cleaning and what not. It turns out Arek did have a broken foot after all. It was 2 minor fractures on the top of his foot. The doctor said he did not need a cast that the fractures should heal fine without it. They gave us a boot cast but Arek refused to walk or even stand with it on. We took it off and he is running and jumping around like nothing happened. Amazing the pain tolerance of this little guy. Lauren is still in track for special Olympics. she is running the 100 meter and doing the softball throw. She is pretty fast can’t wait to see her compete. Lisa and I have been writing a few articles on Associated content. Lisa is training for a new job hopefully it will work out. Brett is still owing people in his games as he calls it, maybe pwning them whatever. He is doing good in school made the honor roll again. School is almost out and it will be fun to see what we could do this summer. Amanda is walking and talking really good she is following simple commands quite good. Alissa has been a pretty good model for her to follow. Alissa has been playing with Lauren outside more and that has been great to see them bonding. Brett is attempting to bond with Arek hopefully he can it will be so beneficial for both of them. We have watched a few good movies since we last wrote. Untraceable was pretty good as was Avp requiem. We are going to watch The bucket List and a few other movies soon.
Posts Tagged ‘Living with Autism!’
Living with Autism update
Sunday, April 27th, 2008To the Hospital With Our Autistic Son we Go!
Saturday, April 5th, 2008Today was a very interesting day. It was a pretty good and peaceful day for most of it. Arek wasn’t feeling that good so he stayed home from school. He was pretty happy and we enjoyed spending time with him. He was his active self. We enjoyed trying to play ball with him. That boy has got an arm! It was a great beginning to a great day!
Later, right before dinner, he jumped off the table in the Living Room and hurt his foot a little bit. He cried, but not very long. We didn’t really notice anything really wrong at the time. When dinner was done, we told Arek to come into eat. He just sat and cried by the gate. Usually he would hop right over the gate and run in the kitchen to eat. This time was different. I had to go and pick him up and carry him to his chair. I though that was a little strange. I still didn’t think anything of it.
After we were all done eating, we noticed that Arek just wanted to stay seated in his chair. If you know Autism, you know that just does not happen. I tried asking him what was wrong but it’s hard with Autism and him not being able to tell me what was wrong. My husband than remembered that he had gotten hurt earlier so we looked at his foot again. This time we noticed it was quite swollen. My husband tried to put him down to stand but Arek refused to. We could tell he was in pain.
We decided to take him to the hospital. Not to be funny but we were a little happy that it was his foot hurting because he wouldn’t be running all over the hospital like a mad man. He was loud with some of his screams but at least he wasn’t running all over throwing things. You know how Autism can be. We actually got in pretty fast. He had to get x-rays. That was a little tough but we got it done. He covered his ears with some of the sounds he heard but other than that he was an angel. They told us that nothing was broken that they could see. It’s sometimes tough to see in children that young. They said that he had sprained it. They wrapped his foot and put a special shoe on. He is supposed to keep it on for a couple of days. We’ll see if that will happen. He has to have a follow up appointment on Monday.
We are so thankful that his foot is not broken. It was a scary thought. I’m glad that things turned out all right. Autism is so scary because they have higher pain tolerance than us. It broke my heart that he couldn’t tell us what was wrong either. I’m so glad that we figured it out. The poor kid is limping around though and it hurts him. I wish I could take it away for him. He mostly just laid around until he fell asleep after the hospital. Hopefully he’ll walk on it a little more tomorrow. We’ll let you know how that goes. Thanks for listening to me babble.
Ten Things Every Autistic Child Wishes You Knew
Wednesday, March 26th, 2008Ten Things Every Autistic Child Wishes You Knew
Note: this is not to be confused with “10 Things The student with Autism Wishes You Knew” by Ellen Notbohm, This is a different list of things. It is focused wider on children, not just students.
1. I am first and foremost a child. There is more to me than a one word description like “autistic.” I know you know this. Why would you not? So, do not be concerned about calling me autistic even if others say it is wrong. It makes no difference to me if you say I am an autistic child or a child with autism. What you do about me is far more important than what you say about me, anyway. Please pay attention to my real problems and not ones made up by some adults. I already have enough problems as it is. There is no need to make up ones to add on.
If I have autism, then I am disabled by it. Saying that famous or unusual people like Einstein, or Mozart, or Van Gogh were autistic says autism is not a disability. Those people were not disabled. I am. You do not help me by pretending or telling others that I am not disabled, even if that makes you feel better. I am dependent on the public’s support. Telling people that I am not disabled, only “just different”, threatens my care. Please take autism seriously so others will, too.
2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia..I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.
3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*…” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language literally. For example, to me it could mean that I think about concrete. It could also mean that I am made of concrete. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Please just tell me “It’s raining very hard.” You may use the word “like” or “as” to help me learn to compare, but do not exaggerate. If something is described “as cold as ice”, it should really be that cold. Pick words carefully. “High as a kite” is not the same “high” as in being drunk, yet the expression is used to compare the two. “I play the shoe horn” is not funny to me. It is confusing. It is difficult to understand expressions that play on the different meanings of the same word. Idioms, puns, nuances, double entendres, inference, metaphors, allusions, hyperbole or exaggeration, sarcasm and much of other people’s humor are lost on me. I have a sense of humor. I find different things funny.
5. Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
6. Because language is so difficult for me, I am visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. Speech and language therapists and behavior specialists knowledgeable about autism can provide a range of learning aids tailored for me. Contact my local school district or disability agency to help you find them.
7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough. The autism needs fixing, not me. Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.
8. Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. It is my situation and my autism that needs to be fixed, not me. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
10. If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just..” and “Why can’t she…” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Understand my autism is a disability. Autism the disability is not some wonderful gift. It cripples. It confuses me when you say my suffering is a good thing I should like. But autism is treatable and I may be able overcome being disabled.
To find out more about treatment and recovery contact one of these two sources:
Autism Research Institute http://www.autismwebsite.com/ari/index.htm
Generation Rescue http://www.generationrescue.org
Look past what you may see as limitations.
All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.
[This "Ten Things. . ." list by the Schafer Autism Report is derivative of one created by Ellen Notbohm, "Ten Things Every Child With Autism Wishes You Knew". Readers are encouraged to copy and distribute this updated list. Contact edit@doitnow.com for details. ]
