Finally!! Utah has an official bill that was introduced in the House today!!! This is fantastic!!! The Utah Autism Coalition has been working tirelessly to get votes and support. Let's help them out! If you live in Utah, you can go to the link below to find out what you can do to help!
This is such an exciting time! Become a part of it and help us pass this new piece of legislation!!
http://www.utahautismcoalition.org/2012/01/utah-autism-insurance-reform-bill-hb-69.html
Thursday, January 19, 2012
Wednesday, January 11, 2012
The Eval From You Know Where...
A lot of you have been very patient with finding out exactly what happened back on Oct. 14th, in relation to Macho's evaluation with the school district. I think I'm finally ready to talk about all the crap that happened during that incredible 4 1/2 hour ordeal. By the time I'm finished writing about it, though, I may need a piece of chocolate...
Before I arrived at the appointment, I made sure to not only have all the necessary paperwork with me, but I also faxed everything to their office beforehand. I faxed over the evaluation from the Pediatric Behavioral Specialist and the eval from the Child Psychologist. I faxed over papers from DDI, which stated Macho's issues with speech and problematic social behavior. When I arrived at the school district, I immediately informed them of the medications my son was taking for various problems. I made sure to inform them of the official diagnoses he's received and the unofficial diagnosis he has yet to receive. I was prepared people. I was as prepared as any parent advocating for their child could get. And yet...
The first thing the head of the eval team did was pull out my son's OLD evaluation - the one from last October - where they denied him for services the first time. Immediately she and two other colleagues began reviewing the old evaluation and stating, "Well, he did pretty well here, so I guess there's no need to perform another test in this area, right?" That's the first time my jaw dropped.
I immediately spoke up and said, "I don't understand why you're even looking at the old eval. It's old. It's a year later. Re-test him on everything!" Amazingly, even after I said that, the Speech Pathologist still came up to me - twice - and asked, "Are you sure you want his speech re-tested? I don't think it's necessary." I had to tell her a total of three times - YES, test my son!
There were brick walls put up everywhere I went. The speech pathologist didn't believe he had a speech problem, despite the fact that he still can't say certain letters and he doesn't do a lot of spontaneous speech. The Psychologist ran aptitude and intelligence tests, and because he scored on the low side of average, she dismissed my concerns as well. When I mentioned to her that Macho has separation anxiety, she said, "Well, I didn't see him react negatively when I took him to the room without you." I had to remind her that he is on MEDICATION! Not to mention, she was luring him over with new toys, so of course he's going to be interested and go without a fuss.
Next, there was the main coordinator. She stood by observing my son's behavior and reactions to pictures, playing with toys, books, etc. She noted that he could smile at her and make eye-contact, and that he was able to identify things. Now, please realize people - I'm not saying my son's case of PDD is severe. He is mild, but combined with his Anxiety and his ADHD and he can be very difficult to teach. I tried speaking with her - with all of them - telling them my struggles and how I've spent SO MUCH time and energy trying to teach him. I've spent countless hours researching how to help him with speech, with his inattention, with his sleep issues, with his nervousness and sometimes his constant fear of things. Then (here comes the compliment that's NOT a compliment), they told me, "Well, obviously you've been doing a great job! He's doing very well." AAAAHHH!! Wanna pull my hair out by this point!
Finally, when all the testing was over and the observations were done, we all sat around a little table with me on one side and the other 4 "experts" on the other side. They all, one by one, determined my son wasn't "bad enough" to be in the special ed program. People, I tried. I tried reasoning, I tried being irrational, I tried yelling, I tried being calm and understanding, I tried everything I could think of to make these people see that my son, though not a severely autistic child, still needs help! Despite all the paperwork I brought from my son's doctors, despite his several diagnoses, despite him being on 3 medications at only three years old for various reasons, THEY STILL SAID NO! They told me the most I could do was enroll him in a regular preschool class. When I told them I already tried that but that all the spots were full, they said, "Oh, well, I know we have one open, but ONLY ONE. Submit the paperwork today and we'll get him in that class." What a convenient "coincidence." I submitted the paperwork, grabbed my son and marched right out of that ()*&^% place!
I came home feeling exhausted, defeated, depressed, pissed off, but more than that - I came home feeling like I failed my son. I felt like my son was slipping through the cracks and as his mother, it was MY JOB to make sure that didn't happen, yet it was happening right before my eyes. I can't fully describe the roller coaster ride of emotions I went through that day. It was tough. I cried, I sobbed - it was like I was in mourning. What was I gonna do next? What could I do next? If I didn't do something right away, I was gonna lose my son. I'd have to watch him continue to regress and sink further and further into the "autism hole" and there would be nothing I could do to stop it.
So here's what I did: I kept working with him. I kept doing floortime therapy with him, I kept working on sounds and doing speech therapy with him. I kept doing attention techniques with him and I kept researching other things I could try. And guess what? I'm going to keep doing those things. I may not be a "professional," but I'm the mother of two special needs kids. Those are all the credentials I need!!! Besides, how could I ever give up with a son as adorable as him? ;)
Before I arrived at the appointment, I made sure to not only have all the necessary paperwork with me, but I also faxed everything to their office beforehand. I faxed over the evaluation from the Pediatric Behavioral Specialist and the eval from the Child Psychologist. I faxed over papers from DDI, which stated Macho's issues with speech and problematic social behavior. When I arrived at the school district, I immediately informed them of the medications my son was taking for various problems. I made sure to inform them of the official diagnoses he's received and the unofficial diagnosis he has yet to receive. I was prepared people. I was as prepared as any parent advocating for their child could get. And yet...
The first thing the head of the eval team did was pull out my son's OLD evaluation - the one from last October - where they denied him for services the first time. Immediately she and two other colleagues began reviewing the old evaluation and stating, "Well, he did pretty well here, so I guess there's no need to perform another test in this area, right?" That's the first time my jaw dropped.
I immediately spoke up and said, "I don't understand why you're even looking at the old eval. It's old. It's a year later. Re-test him on everything!" Amazingly, even after I said that, the Speech Pathologist still came up to me - twice - and asked, "Are you sure you want his speech re-tested? I don't think it's necessary." I had to tell her a total of three times - YES, test my son!
There were brick walls put up everywhere I went. The speech pathologist didn't believe he had a speech problem, despite the fact that he still can't say certain letters and he doesn't do a lot of spontaneous speech. The Psychologist ran aptitude and intelligence tests, and because he scored on the low side of average, she dismissed my concerns as well. When I mentioned to her that Macho has separation anxiety, she said, "Well, I didn't see him react negatively when I took him to the room without you." I had to remind her that he is on MEDICATION! Not to mention, she was luring him over with new toys, so of course he's going to be interested and go without a fuss.
Next, there was the main coordinator. She stood by observing my son's behavior and reactions to pictures, playing with toys, books, etc. She noted that he could smile at her and make eye-contact, and that he was able to identify things. Now, please realize people - I'm not saying my son's case of PDD is severe. He is mild, but combined with his Anxiety and his ADHD and he can be very difficult to teach. I tried speaking with her - with all of them - telling them my struggles and how I've spent SO MUCH time and energy trying to teach him. I've spent countless hours researching how to help him with speech, with his inattention, with his sleep issues, with his nervousness and sometimes his constant fear of things. Then (here comes the compliment that's NOT a compliment), they told me, "Well, obviously you've been doing a great job! He's doing very well." AAAAHHH!! Wanna pull my hair out by this point!
Finally, when all the testing was over and the observations were done, we all sat around a little table with me on one side and the other 4 "experts" on the other side. They all, one by one, determined my son wasn't "bad enough" to be in the special ed program. People, I tried. I tried reasoning, I tried being irrational, I tried yelling, I tried being calm and understanding, I tried everything I could think of to make these people see that my son, though not a severely autistic child, still needs help! Despite all the paperwork I brought from my son's doctors, despite his several diagnoses, despite him being on 3 medications at only three years old for various reasons, THEY STILL SAID NO! They told me the most I could do was enroll him in a regular preschool class. When I told them I already tried that but that all the spots were full, they said, "Oh, well, I know we have one open, but ONLY ONE. Submit the paperwork today and we'll get him in that class." What a convenient "coincidence." I submitted the paperwork, grabbed my son and marched right out of that ()*&^% place!
I came home feeling exhausted, defeated, depressed, pissed off, but more than that - I came home feeling like I failed my son. I felt like my son was slipping through the cracks and as his mother, it was MY JOB to make sure that didn't happen, yet it was happening right before my eyes. I can't fully describe the roller coaster ride of emotions I went through that day. It was tough. I cried, I sobbed - it was like I was in mourning. What was I gonna do next? What could I do next? If I didn't do something right away, I was gonna lose my son. I'd have to watch him continue to regress and sink further and further into the "autism hole" and there would be nothing I could do to stop it.
So here's what I did: I kept working with him. I kept doing floortime therapy with him, I kept working on sounds and doing speech therapy with him. I kept doing attention techniques with him and I kept researching other things I could try. And guess what? I'm going to keep doing those things. I may not be a "professional," but I'm the mother of two special needs kids. Those are all the credentials I need!!! Besides, how could I ever give up with a son as adorable as him? ;)
Wednesday, December 28, 2011
This Is Me...
Ever wonder what it's like to grow up with autism? Here's something I wrote as if an autistic adult were writing to you, my readers:
This is me.
When I was little I tried making friends. Sometimes it worked and other times it didn't. Some kids just never really liked me, or thought I was "weird." Sometimes I was even laughed at, just because I said something that didn't quite make sense. I did my best to fit in though. I'd even laugh at their jokes, even though I didn't understand why it was funny. Is that weird?
When I was a little older, making friends became a little easier. By now, most kids were into sports, and I knew I could make friends if I learned to play a few. I wasn't very good at most of them. They were just too complicated to understand. People thought it was strange that I just couldn't get it. But there was one sport I could do that was really simple: running. I loved running and I could run fast! People always picked me to be on their racing team and that made me happy. To make sure I didn't accidentally trip on my feet, I always counted in my head, "Left, right, left, right, left, right!" Is that odd?
When I reached high school, even though sports were still around, most kids didn't like hanging out with me very much. I mostly kept to myself and I studied a lot. I always got A's in all my classes and the teachers liked me a lot. But the kids didn't like me because I was smart. I spent a lot of time listening to music. It was always the best way to escape for me. Other kids didn't know what to think of me, except to say I was different: "You're just different. You're not like the rest of us." I just wanted acceptance, friendship, someone to laugh with. Is that different?
I'm an adult now. I'm married. I even have a couple of kids. We live in a house and I love my family. Making friends is much simpler now, though I only have a very small handful I interact with on a regular basis. I keep my other "friends" at a distance; that way they won't really see the real me.
The real me stumbles over my own thoughts. I say one word when I really mean another.
The real me is super picky about the foods I'll eat. A lot of people think it's "funny" that I don't like salt.
The real me sees other people in pain or in need and can't handle it. I either shut down or I feel like my heart is breaking.
The real me has a hard time with sarcasm. I really, truly, just don't get it.
But the real me is just like you. I feel, I think, and I try every day to do better. I try every day to be a good spouse and parent. I try to be a good friend. I try to be nice and respectful to everyone, even though a lot of people aren't very nice or respectful of me. A lot of them like to poke fun and laugh at me for my eccentricities. But it's okay; I can't fault them for what they don't understand.
What's my point with all this? I've heard a lot of naysayers in my lifetime. I've heard a lot of people tell me things like, "You're too naive;" "you can't do that, it's too hard for you;" "quit trying, accept reality." For whatever reason, some people believe it is their place to tell you not to try something new, or that something is too hard, or that you need to be more realistic with your expectations. To everyone trying something new, trying something that's hard, or trying to reach their dreams: keep trying, keep going. Never give up believing. Never give up hope.
I may not be "perfect" by other people's standards. I may not always say the "right" things and act the "right" ways, but I accept myself for who I am. I love myself for who I am.
This is me.
This is me.
When I was little I tried making friends. Sometimes it worked and other times it didn't. Some kids just never really liked me, or thought I was "weird." Sometimes I was even laughed at, just because I said something that didn't quite make sense. I did my best to fit in though. I'd even laugh at their jokes, even though I didn't understand why it was funny. Is that weird?
When I was a little older, making friends became a little easier. By now, most kids were into sports, and I knew I could make friends if I learned to play a few. I wasn't very good at most of them. They were just too complicated to understand. People thought it was strange that I just couldn't get it. But there was one sport I could do that was really simple: running. I loved running and I could run fast! People always picked me to be on their racing team and that made me happy. To make sure I didn't accidentally trip on my feet, I always counted in my head, "Left, right, left, right, left, right!" Is that odd?
When I reached high school, even though sports were still around, most kids didn't like hanging out with me very much. I mostly kept to myself and I studied a lot. I always got A's in all my classes and the teachers liked me a lot. But the kids didn't like me because I was smart. I spent a lot of time listening to music. It was always the best way to escape for me. Other kids didn't know what to think of me, except to say I was different: "You're just different. You're not like the rest of us." I just wanted acceptance, friendship, someone to laugh with. Is that different?
I'm an adult now. I'm married. I even have a couple of kids. We live in a house and I love my family. Making friends is much simpler now, though I only have a very small handful I interact with on a regular basis. I keep my other "friends" at a distance; that way they won't really see the real me.
The real me stumbles over my own thoughts. I say one word when I really mean another.
The real me is super picky about the foods I'll eat. A lot of people think it's "funny" that I don't like salt.
The real me sees other people in pain or in need and can't handle it. I either shut down or I feel like my heart is breaking.
The real me has a hard time with sarcasm. I really, truly, just don't get it.
But the real me is just like you. I feel, I think, and I try every day to do better. I try every day to be a good spouse and parent. I try to be a good friend. I try to be nice and respectful to everyone, even though a lot of people aren't very nice or respectful of me. A lot of them like to poke fun and laugh at me for my eccentricities. But it's okay; I can't fault them for what they don't understand.
What's my point with all this? I've heard a lot of naysayers in my lifetime. I've heard a lot of people tell me things like, "You're too naive;" "you can't do that, it's too hard for you;" "quit trying, accept reality." For whatever reason, some people believe it is their place to tell you not to try something new, or that something is too hard, or that you need to be more realistic with your expectations. To everyone trying something new, trying something that's hard, or trying to reach their dreams: keep trying, keep going. Never give up believing. Never give up hope.
I may not be "perfect" by other people's standards. I may not always say the "right" things and act the "right" ways, but I accept myself for who I am. I love myself for who I am.
This is me.
Sunday, December 25, 2011
Christmas Eve
I hope everyone had a great Christmas Eve and is having a great Christmas Day! I had a really great day yesterday and this morning has been fun too. I intend to blog it all - just like I intend on blogging a whole BUNCH of other things - but I know I probably won't get to it for a while. Sad I know. I really miss blogging here on a regular basis, but things just keep getting in the way of me sitting down for longer than 5 minutes to let you know what's going on.
Having said that, my BFF (Blessed Rain) blogged our Christmas Eve together. Do drop by and take a look at the amazing pictures she took. Thank you BFF for taking pictures and blogging everything! You're so on the ball!
Take care everyone, talk to you soon! (I hope)....
http://telishag.blogspot.com/2011/12/christmas-eve.html
Having said that, my BFF (Blessed Rain) blogged our Christmas Eve together. Do drop by and take a look at the amazing pictures she took. Thank you BFF for taking pictures and blogging everything! You're so on the ball!
Take care everyone, talk to you soon! (I hope)....
http://telishag.blogspot.com/2011/12/christmas-eve.html
Wednesday, December 14, 2011
This Is Why You Don't Hear From Me...
I came across this blog post by flappiness is... and it is spreading like wildfire. Why? Because it's probably one of the most clearest and most honest posts about why parents of special needs kids don't go out, or don't talk on the phone, and why people think we've "changed." Read the original post here, or you can read it below. Thank you, flappiness is... for giving parents a voice!
Dear Friend,
You have no doubt noticed that you haven’t seen much of me lately. Maybe weeks, maybe months, maybe years. I bump into you in the grocery store, and we always talk about getting together soon and about how ridiculously long it has been. And it really has been too long. I really have wanted to see you. But I will admit that sometimes when you call, I don’t answer the phone. Often it is because I can’t talk amidst a cacophony of banging, screeching, and crying. Mostly it is because I have been standing there for some time trying to figure out just what it is that my child wants so badly, but doesn’t have the words to ask. He’s upset, and there will be no conversation if I don’t figure it out. I intend to call back, but because he has so much trouble going to sleep and staying asleep, I often just give up and hope for another opportunity.
But sometimes I don’t answer for no reason at all. Yes, I swear I’m eating, brushing my teeth, and taking showers. Don’t worry — I’m not that far gone. I simply find it overwhelming at times to even think about making casual conversation. There is so much to catch up on, and I don’t have the energy for that. So, please believe me when I tell you –It’s me, not you.
But you probably already knew that. I’ve heard the other end of the phone go quiet and then realize that I have been talking for a long time about my child. It’s often the end of our time together when I realize that he has been the sole topic of conversation. I don’t mean to do it. I’m simply overwhelmed and leaning on you in the same way I used to about other sorts of things. Except that worries about him are now a broken record in my mind. I forget to ask you about your kitchen renovation, your vacation, what is going on with your sister-in-law, or your promotion. And even when I do ask, I’m distracted and don’t seem to have the capacity for all the details. I really do care about you and your life. It is simply that there is only so much room in the active part of my mind, and right now it is taken up with him, his needs, and his myriad of therapy sessions each week.
You are still the great, caring person you always were. And I know that you mean well when you ask me to “bring the kids” to some get-together you are having. I know that your feelings will get hurt when I inevitably decline. But, you see, when everyone else it sitting back and laughing — watching their kids play in the pool — I am running around trying to make certain that my curious little tester of bouncing properties isn’t destroying your home. You have a lot more knickknacks and breakables than me these days. I’m trying to make certain that he is fed, because he won’t eat any of the child-friendly foods you so kindly have served. And, because you don’t have a fence or child-proof lock on the exterior doors or safety gate on your stairs, I can’t spend any time with you while there anyway. It becomes a stressful experience that I avoid like the plague. And, even if I do get a sitter and come without the kids? I spend my time feeling guilty about not bringing them.
So, that’s where I am right now. And why I haven’t been calling. I really would like to have lunch with you. So, yes, please ask. But I’ll need you to do me a favor. Please give me several days’ notice. Because I don’t want to bring the kids, and I need to make arrangements. Please pick an affordable restaurant. Because all these therapies, treatments, and special diets are costly. Please let me go on a little while about my child. Because it explains so much about the Me of Now.
And then be sure to sweetly say, “Now let’s talk about ME” and proceed to do so. I can take it, really. Sometimes, I just need to be reminded. :)
Dear Friend,
You have no doubt noticed that you haven’t seen much of me lately. Maybe weeks, maybe months, maybe years. I bump into you in the grocery store, and we always talk about getting together soon and about how ridiculously long it has been. And it really has been too long. I really have wanted to see you. But I will admit that sometimes when you call, I don’t answer the phone. Often it is because I can’t talk amidst a cacophony of banging, screeching, and crying. Mostly it is because I have been standing there for some time trying to figure out just what it is that my child wants so badly, but doesn’t have the words to ask. He’s upset, and there will be no conversation if I don’t figure it out. I intend to call back, but because he has so much trouble going to sleep and staying asleep, I often just give up and hope for another opportunity.
But sometimes I don’t answer for no reason at all. Yes, I swear I’m eating, brushing my teeth, and taking showers. Don’t worry — I’m not that far gone. I simply find it overwhelming at times to even think about making casual conversation. There is so much to catch up on, and I don’t have the energy for that. So, please believe me when I tell you –It’s me, not you.
But you probably already knew that. I’ve heard the other end of the phone go quiet and then realize that I have been talking for a long time about my child. It’s often the end of our time together when I realize that he has been the sole topic of conversation. I don’t mean to do it. I’m simply overwhelmed and leaning on you in the same way I used to about other sorts of things. Except that worries about him are now a broken record in my mind. I forget to ask you about your kitchen renovation, your vacation, what is going on with your sister-in-law, or your promotion. And even when I do ask, I’m distracted and don’t seem to have the capacity for all the details. I really do care about you and your life. It is simply that there is only so much room in the active part of my mind, and right now it is taken up with him, his needs, and his myriad of therapy sessions each week.
You are still the great, caring person you always were. And I know that you mean well when you ask me to “bring the kids” to some get-together you are having. I know that your feelings will get hurt when I inevitably decline. But, you see, when everyone else it sitting back and laughing — watching their kids play in the pool — I am running around trying to make certain that my curious little tester of bouncing properties isn’t destroying your home. You have a lot more knickknacks and breakables than me these days. I’m trying to make certain that he is fed, because he won’t eat any of the child-friendly foods you so kindly have served. And, because you don’t have a fence or child-proof lock on the exterior doors or safety gate on your stairs, I can’t spend any time with you while there anyway. It becomes a stressful experience that I avoid like the plague. And, even if I do get a sitter and come without the kids? I spend my time feeling guilty about not bringing them.
So, that’s where I am right now. And why I haven’t been calling. I really would like to have lunch with you. So, yes, please ask. But I’ll need you to do me a favor. Please give me several days’ notice. Because I don’t want to bring the kids, and I need to make arrangements. Please pick an affordable restaurant. Because all these therapies, treatments, and special diets are costly. Please let me go on a little while about my child. Because it explains so much about the Me of Now.
And then be sure to sweetly say, “Now let’s talk about ME” and proceed to do so. I can take it, really. Sometimes, I just need to be reminded. :)
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