Busy April 28, 2009
I am still around, not doing great on my plan though. I have finals this week and next so I have not had time to post. I will update after Thursday May 7th, that is when all of my finals will be over.
I am still around, not doing great on my plan though. I have finals this week and next so I have not had time to post. I will update after Thursday May 7th, that is when all of my finals will be over.
Everyday is a struggle to understand Matthew, everyday is unpredictable. There was a time when I felt he would never be “normal” and function as you or I. Today I have hope!!! My son has not been officially diagnosed, because for some reason people are reluctant to label children who suffer with symptoms of Autism. Matthew has made great strides and may very well be “normal” one day. At the moment we are in limbo. My son is in early intervention and has wonderful therapists, but that was not always the case and I want people to understand what it is like to not know who your child is or how to help him.
As of now Matthew is being treated for a “developmental delay” the only label on him at the moment. As a mother I know it is more and I hope it will fade away with time and early intervention, but I am a realist and that may not happen. My child IS on the Autism spectrum. Where we are not sure. Mild to moderate with maybe OCD, and ADD. I am writing this blog to raise awareness about Autism and I want to share an excerpt from my favorite book. I cried as I read this book because it was as if Matthew himself was writing it to me.
Please make a donation this month to a national Autism charity to fund research to fight Autism.
This is my favorite Autism site AUTISM SPEAKS
Thank you so much for reading this blog!!
Ten Things Every Child with Autism Wishes You Knew
By Ellen Notbohm
Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute — the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.
Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.
Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.
Here are ten things every child with autism wishes you knew:
1.) I am first and foremost a child. My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?
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 very literally. 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 “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.”
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
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 very 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.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.
I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
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 and that I need “fixing.” 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.
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.) 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. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They may have had autism too.
The answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements from today’s children with autism, children like me, lie ahead?
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.
© 2005 Ellen Notbohm.To contact Ellen or explore her work, please visit http://www.ellennotbohm.com.
Yep, I think I can say now that I am determined enough to stay on plan this time. I am back down to where I was at the end of the first week and -1. Last week was such a bad week and normally it would have thrown me into the I don’t give a s*** mode. I think there are 2 people responsible for me not giving up. One is someone on here who has been lucky enough to reach a big goal and through her daily posts, I feel like it is possible for me to make it to mine. Thanks for that…..The other is my husband, who in my weakest moment became my rock and gave me a reason to keep going. He all of a sudden got motivated and I felt like I had to help him, and that made me commit to this. It has been 7 days for him as well and truthfully I am stunned. He counts his calories and is walking with me in the mornings and he helped me and does not even know how much.
Lets get to the facts
I am drinking water a lot.
I am walking/jogging 3 days a week.
I have been on plan (within calories every day) for 7 days.
I am now getting my fat grams within range also.
I have had about 4 cokes in 3 weeks (but they were all added into my calories).
I have had some comments lately and I wanted to say thanks for reading my blog. Some people I can not write back because their blog or e mail is not listed so I am going to post answers here.
Getfit2009, I think anything I can do at home would help, but when I am here I don’t seem to have 5 minutes away from the kids. I am going to have to do something here for when it rains, and stuff.
Joy, I have been reading your blog as well and thank you for the comments.
Brandie, Thank you for the suggestions I am trying some of them and I appreciate you taking the time to try and help me.
I AM POSTING A SPECIAL BLOG POST IN SUPPORT OF MY SON AND OTHERS LIKE HIM. IF YOU HAVE EVER WONDERED ABOUT AUTISM, APRIL IS NATIONAL AUTISM AWARENESS MONTH AND I AM POSTING AN EXCERPT FROM MY FAVORITE BOOK. I HOPE IT WILL HELP PEOPLE UNDERSTAND CHILDREN LIKE MATTHEW BETTER AND RAISE AWARENESS ABOUT AUTISM.
THIS MONTH PLEASE MAKE A DONATION TO A NATIONAL AUTISM CHARITY TO HELP FUND RESEARCH FOR AUTISM!!! tHIS IS MY FAVORITE AUTISM CHARITY, AUTISM SPEAKS
I swear sometimes the titles are half the fun!
This is day 5 of my plan and I have been on plan every single day!!!! Yay for me!!!!
I have drank a ton of water, and no coke today… I had coke yesterday BUT it fit into my calories. This was my low day of 1,400 calories and I am at like 1,360, and this might be the first day that I am within and on the LOWER end of my fat grams.
I walked/jogged 2 miles today and felt amazing the rest of the day. So why is it I can’t just do it and not try and find ways to get out of it? I want to do it but actually getting ready, making plans for someone to watch the kids and dragging myself some where to perform the act of exercise is draining. So draining that I am too tired to exercise, lol. No seriously, I am considering a gym membership but I am cheap, and I don’t want to waste money if I won’t go, and there is no guarantee that I will go, so….Thinking about it some more. I may ask for that for Mothers Day
Jason is down 11 pounds and is really on the calorie counting band wagon, lol. Who knew, not me I can tell you. I stil have not lost anything but I think it is close to seeing TOM, so I will know on Friday if I have lost anything for sure. I think Friday’s are a bad day to weigh in for me, I might gradually move them up a day at a time to get it on another day.
I could always try it this way if the other way does not work!!!
Okay 4 whole days ON plan, yay for me. I have done well with my calories but I think I need to work on the formula more. I am not sure how to allocate my calories just jet. I was trying to give myself 1800 calories but I haven’t found a balance for them yet for shifting. It is a work in progress and as long as progress is being made, I will not complain.
Two things I am having a problems with are, Craving sweets, and getting below my fat requirements. I am like double on fat everyday. I am trying to make a better effort at that and I have no idea what to do about wanting the sweets. I am a carbohydrate junkie. I love breads, chocolate, cake, cookies,pasta, potatoes,cokes, anything starchy or sweet. I am like a drug addict, when I want it, I really don’t care that I am fat or that I am throwing all my progress down the drain.
I NEED to make myself get in more exercise, “SIGH”. I feel so much better afterward, but I have to get my fat butt up and do it to feel better. I think I need a buddy that I can talk to everyday and who will keep me thinking about the big picture. I know you have to do it for yourself, but I need someone to help me feel like they understand my struggles. Tomorrow is walking day and I will be up bright and early so I have to get some sleep.
Something funny and something strange Chocolate fueled car.
I was reading Tammy’s blog like I do every couple of nights, and I had no idea what she was talking about. A rant? I missed something good? Where? So naturally I went to be nosy and found it right away. I had very strong opinions about it and so I chose to voice them here instead of the forum. There is no need to stir the pot.
I to am jealous of a lot of people and how fast they lose weight. I to wish the pounds would melt off me but they can only melt as fast as you work. I can say I have never seen someone so determined to stay on plan and so seemingly dedicated. It takes time, practice,patience,persistence,and hard work to lose weight and even more to stay on task the whole time. Most all the time people complain that they can’t lose weight, they are sabotaging themselves. They might not even know it but they are. they don’t add their food up or make an excuse here or there about why they couldn’t exercise.
I think the problem is that people see someone doing well and they naturally feel like they have to defend themselves. Obviously it CAN be done, so why are they not making the same progress. I too start and stop but I know hy I do it and I am working on it. I do not do anything for myself, I claim I do not have time, and the truth is I am lazy. That is not everyone’s problem, but it is mine.
Today not so well, I did fine until I got home and then I binged on cookies “sigh”. Tomorrow is a new day and I will do better.
Easter has come and gone and I have not exploded…..So this year was the first year the boys really got excited about Easter baskets. Matthew was not having any of it though, he was grouchy and could care less about anything other than eating his treats. Smart cookie that I am, I only got them 2 candy items. One egg with M&Ms in it and one ring pop. The rest was snack packs of graham crackers and a rice crispy treat, so nothing for me to binge on all week long.
Turns out Matthew was allergic to something and broke out into patches of itchy whelps all over his body. The best I can figure is that he is allergic to Blue dye #1. There is another child in the family (somewhat distant) cousin that is allergic to several different dyes in food. Nothing a little Benadryl and calamine lotion didn’t clear up. Olivia got a pair of dress up shoes in her basket and she quickly learned to walk in them and spent the whole day clicking around on the hardwood floors. Jacob and Ethan spent all day playing with various items from their baskets.
Most of my day was spent cooking and cleaning. I made baked beans, deviled eggs, green beans, ham, potato salad, and mac & cheese for the kids. Out of all that, I thought I would be well over my calories for the day, but I was not surprisingly. Jason did well too, and even went back for seconds. It is going to pour rain tomorrow and all night tonight so we wont be walking in the morning. That is 3 days we have missed and I am afraid it will throw us off track. Work out videos are great I guess but my house is so small and the only time I could do them are at night when the kids go down and they might think we were having an earthquake,lol.
I stayed under my calories for the last two days but I has over on fat grams both days. I wish I could get off of processed foods. Everything is about convenience for me. If is is ready to use or eat that is great for me. I tried to cook up a few things today so I would be more prepared with dinner, and we went to Sam’s and I spent an outrageous amount of money and “healthy” food. I bought a lot of different kind of fish and I got some boneless skinless chicken breasts. I do not really like salmon but I am going to try it tomorrow night.
I really feel kinda crappy since I have not been exercising any, so I think I will try a video when I first put the kids down tomorrow night, that way I will not wake them up. I am going to try 30DS again, even though it almost killed me last time I tried it. Maybe this time I will make it half way through. I have to go and do some homework but before I do, I found a site while I was looking up calories and I have not joined yet but it seems like it might be a good site to join and if you don’t, you can still use it to look up your calories. CalorieKing
Plan for tomorrow:(B)coffee, cereal, banana,(L)turkey sandwich, LF cheese its, apple(D) salmon,rice,broccoli, pinto beans. I am going to try and make that all add up to 1500cal. I will have to look some of it up and see if it is close though and then add or delete some things.
This morning I was up a pound. I knew I would be so I was not shocked to see 237 on the evil scale. We got up to walk this morning and it was thundering and lightning. We laid there for about 5 minutes and the bottom just fell out of the sky. So 2 days this week with no walking, and I ate like **** all week. So I tried to stick to my little menu but ailed miserably. The problem is I need to plan ahead because I am a very busy person and when I am not busy it totally slips my mind.
I think I have it finally figured out though. I am going to try and do sort of a Wendie plan with calories. I will have to make myself count them and write them down though. I need to start carring a purse….then I will have a place to keep my stuff with me. I feel like I am chasing my tail most everyday. I do okay once I get started but if I get off program at all I just lose the whole thing. Okay this is what I am going to do….
It is truelly like a rodeo, I fall off and as soon as I am back on I fall off again. If nothing else i am entertainment for some people. Okay here it goes, a solid plan.
Goal is still 20 pounds by Memorial day, so that means I need to be down to 221 by then. Tomorrow I have work and the school so my plan is to walk/jog 2 miles before work. I guess my menu will be….
“sigh”…..that is all I can think of right now. I will have to see what I can come up with tomorrow. I can never find enough calories to eat if i am trying but if I am not then I eat enough for 2 people.
Well I am tired but here is something I heard on the news and thought I would share.
“We are seeing an obesity epidemic: One out of every four New Yorkers is obese, up from about 14 percent in 1995,” Laura L. Anglin, the state budget director, said at a news conference. She cited research linking soft drinks to obesity in children and diabetes in women and predicted that the tax would curb consumption of the affected drinks by 5 percent.
Read full article on the NY Times web site here and tell me what you think. Taxing Softdrinks in NY
Stress makes me eat… I don’t know if I remembered to post of not about my WI last Friday. I was down 5 pounds but I have not lost anything else this week and I think I might have gained a pound or 2. I did have some good news though….I was talking to my advisor about what I needed to do to raise my points for the nursing program and in passing she mentioned some thing about me applying for the day program…..hmmmm…I did not apply for the day program (which was more competitive). I went to the lady who does the applications and she had mistakenly put me down for the day program. The night program accepted 47, set up 3 alternate spots, and denied 48 people. When she changed her mistake it put me in the #2 alternate spot…..So now I just need 2 people to drop out, not meet their class requirements, or get accepted somewhere else and I am in. I almost did not go and talk to her because I am so back and forth on it. But I was so excited that it just shows how bad I really wanted to get in. Picture this fat girl jumping up and down in the hall outside of her A&P II lab, hugging all over her best friend. I am sure I looked like a blooming idiot. We will see what happens though, I need two people to lose or drop their spot before fall. I hate to have to hope for that but I am.
Anyway I am not doing so well this week. With the stress and the worrying I have not been eating well and I even opted out of walking this morning. I have to do better I know but I don’t know how to make myself plan better. I have good intentions and then I gradually stop doing it. Jason is no help, he just wants me to forget about the whole thing. I haven’t been on the forum in the last week too though and that helps me I think, so i need to read some posts and get back on track.
I had to leave work today and get Matthew from school and take him to the doctor. They called me at work because he has pink eye…..I have never seen or had pink eye, and so I am hoping the antibiotic works before he spreads it to the other 3 kids. Of course that is just another day of running around and then he sat on my lap all day so I could not get anything done around here. That is okay though he is usually so caught up in everything else he does not want to sit and cuddle much.
So they went to bed tonight and I ran out to buy stuff for their Easter baskets….I bought almost no candy, yay. The things I did buy are just enough for each child and nothing I like anyway. So that is one candied holiday out of the way. I guess I am going to cook a small Easter dinner and we are not having a big crowd so my goal is to only cook what we need and eat less than I want, lol. I am going to do better tomorrow and maybe I will at least be the same as last week by the time I WI on Friday.