We've been sick on and off since mid September. I was sick for my birthday in late September. I seemed to get better only to have it return with a bang about 2 weeks ago. Mark was just starting his second round of antibiotics and Melodi suddenly became ill on Madilyn's birthday. She tested positive for swine flu and shortly after that I started feeling sick again. The doctors assume I had swine flu but also said walking pneumonia. Now 9 days later I'm on my second round of antibiotics and still sick. The coughing spells are bad, luckily I have an inhaler now to help.
Mark seems to be doing better, Melodi bounced back quickly and Madilyn has not been sick (knock on wood). Let's hope I get better and we get back to normal life soon.
Thursday, October 29, 2009
Wednesday, October 14, 2009
Unnecessary Battles
It seems that we are always in some sort of battle with the school system. I am amazed that there are laws in place, yet they are not followed and that we are the bad guys for insisting that they be followed. I've spent the past 3 years learning Special Education Law in order to fully advocate for my kids. My law books have become my bible and I've actually had to use them in school meetings when I'm told I don't know what I'm talking about. These are not simple misunderstandings between us and teachers or even the Principal who may not be well versed in the law. These are major debates with top District Administrators who oversee Special Education and are paid to know the law.
I am also constantly amazed that the school system will not admit if they've done something wrong and that they will make promises to your face but never document them and then deny the promises later. The mistakes and promises are always classified as "misunderstandings" or "miscommunications" despite audio recordings and the use of state assigned facilitators/notetakers. There are never any apologies - nothing. I'm not an insensitive horrible person. I understand that people are human and mistakes are made. There would be alot less battles and hostilities if people and the system in general would just own up to things if they've messed up or made empty promises.
I recently sat in a meeting where the school District tried to make major changes to my daughters Individualized Education Plan (Iep). They had no data or assessments to support the changes as they felt that their opinions were sufficient. I knew the law required them to provide more to support the change. The District Administrator at the meeting admitted that they did not have all that was needed to make the changes but that the changes were being made regardless. I tried to work with them, asked them to obtain the necessary testing/data first and then re-visit the issue, they refused. I warned them that I knew I could file for a state hearing which would require them to maintain the status quo until the hearing was completed. They didn't care and told me not to threaten them. We were forced to file the state hearing paperwork that night to maintain the aide for our daughter and are now the bad guys. The State is required now to pay an out of State Attorney to act as the Hearing Officer and our District has hired their own Attorney also. We suspect the matter will be quickly resolved before a hearing as they have no legal standing for what they attempted to do, the law is very clear on what was required and they will not want the hearing to become a public record. In the meantime tax payer dollars are paying for these Attorneys to be involved because the school district tried to avoid following the law and now doesn't want to do the right thing unless forced. There will never be an admission of wrong doing, they will simply try to settle in "the spirit of compromise." It's really sad that I as a mom of two special needs kids has to spend my time policing the school system and their compliance with basic laws. I am not paid for this, yet the idiots involved can sit in countless meetings about the issue and drag things out for as long as possible while they are being paid. It's all just ridiculous!!!!
I am also constantly amazed that the school system will not admit if they've done something wrong and that they will make promises to your face but never document them and then deny the promises later. The mistakes and promises are always classified as "misunderstandings" or "miscommunications" despite audio recordings and the use of state assigned facilitators/notetakers. There are never any apologies - nothing. I'm not an insensitive horrible person. I understand that people are human and mistakes are made. There would be alot less battles and hostilities if people and the system in general would just own up to things if they've messed up or made empty promises.
I recently sat in a meeting where the school District tried to make major changes to my daughters Individualized Education Plan (Iep). They had no data or assessments to support the changes as they felt that their opinions were sufficient. I knew the law required them to provide more to support the change. The District Administrator at the meeting admitted that they did not have all that was needed to make the changes but that the changes were being made regardless. I tried to work with them, asked them to obtain the necessary testing/data first and then re-visit the issue, they refused. I warned them that I knew I could file for a state hearing which would require them to maintain the status quo until the hearing was completed. They didn't care and told me not to threaten them. We were forced to file the state hearing paperwork that night to maintain the aide for our daughter and are now the bad guys. The State is required now to pay an out of State Attorney to act as the Hearing Officer and our District has hired their own Attorney also. We suspect the matter will be quickly resolved before a hearing as they have no legal standing for what they attempted to do, the law is very clear on what was required and they will not want the hearing to become a public record. In the meantime tax payer dollars are paying for these Attorneys to be involved because the school district tried to avoid following the law and now doesn't want to do the right thing unless forced. There will never be an admission of wrong doing, they will simply try to settle in "the spirit of compromise." It's really sad that I as a mom of two special needs kids has to spend my time policing the school system and their compliance with basic laws. I am not paid for this, yet the idiots involved can sit in countless meetings about the issue and drag things out for as long as possible while they are being paid. It's all just ridiculous!!!!
Friday, October 2, 2009
The Simple Things
I just love my kids.
-We had new beds delivered yesterday at the same time that the roofers were here doing repairs. The squeals of delight were precious as they watched the men go up and down the ladder and saw the delivery truck arrive. You would have thought it was Christmas around here. They love love love their new beds. Madilyn had been sleeping on a really old mattress that I bought for my first apartment 20 years ago while Melodi had been sleeping in a toddler bed with her crib mattress. It was definetly time for new beds. Both girls were so excited to show daddy their new beds when he got home last night. Melodi kept telling us that she is a big girl now. There were giggles last night as we put them to bed and smiles this morning. It was all very cute.
-They had a play date yesterday with a friend at McDonalds (thanks Caroline). There were more giggles and excitement. Play dates have been rare up to this point as we've been busy with therapies for years. It's so nice to know that these can become more common now.
-Today we are going to bake together. I call it "cooking with mommy time." They are both so excited to be in the kitchen and want to help with everything. It's a nice bonding time for us.
Their happiness is a good reminder for me. Life gets too complicated/stressful, sometimes you just have to enjoy the simple stuff.
-We had new beds delivered yesterday at the same time that the roofers were here doing repairs. The squeals of delight were precious as they watched the men go up and down the ladder and saw the delivery truck arrive. You would have thought it was Christmas around here. They love love love their new beds. Madilyn had been sleeping on a really old mattress that I bought for my first apartment 20 years ago while Melodi had been sleeping in a toddler bed with her crib mattress. It was definetly time for new beds. Both girls were so excited to show daddy their new beds when he got home last night. Melodi kept telling us that she is a big girl now. There were giggles last night as we put them to bed and smiles this morning. It was all very cute.
-They had a play date yesterday with a friend at McDonalds (thanks Caroline). There were more giggles and excitement. Play dates have been rare up to this point as we've been busy with therapies for years. It's so nice to know that these can become more common now.
-Today we are going to bake together. I call it "cooking with mommy time." They are both so excited to be in the kitchen and want to help with everything. It's a nice bonding time for us.
Their happiness is a good reminder for me. Life gets too complicated/stressful, sometimes you just have to enjoy the simple stuff.
Wednesday, September 30, 2009
Autism Therapies
My girls have come such a long way through various therapies. I always silently smile/cheer when someone is surprised to hear that they have Autism. We have had great success with the following therapies:
-Applied Behavioral Analysis
-Speech Therapy
-Occupational Therapy
-Physical Therapy
-Social Skills Training
-Therapeutic Listening (The Listening Program)
We also learned last year that the girls have additional disabilities beyond Autism. These incluce Auditory Processing Disorder, Sensory Processing Disorder, Anxiety Disorder and Seizure Disorder. Many of these things were blamed for years as being part of Autism but actually are seperate. It has been amazing to watch the girls improve rapidly once we learned of the additional disorders and needs.
I'd like to dedicate today's blog to Auditory Processing Disorder and Seizure Disorder.
Madilyn has Auditory Processing Disorder. In a nutshell it takes her brain longer to process language and what is going on in the world around her. For years she would cover her ears, become anxious and at times scream. This was blamed as part of Autism. Fortunately we saw a news show about APD and decided to investigate. We took her to an Audiologist for the diagnosis. It took Madilyn nearly a year to be comfortable enough with the Audiologist for the testing. We began Therapeutic Listening nightly (music therapy) and within 6 weeks saw major improvements. In May 2008 the school system told us that Madilyn could only handle being in a regular education classroom for 20 minutes a day. We started Therapeutic Listening in August 2008 and by the end of September 2008 she was able to spend the bulk of her day in the regular ed class. She has been able to maintain placement in regular ed and now attends our neighborhood school. We had discussed the possibility of Auditory Processing with the school system and they initially blamed everything on Autism. We pushed harder and they finally did some tests to pacify us. They found that there was no problem, it was only after we went to a private audiologist that we got real answers. My point is don't rely on the school system to look for problems/solutions or test for them, the more they find the more they have to provide and they want to provide as little as possible.
Melodi has a Seizure Disorder. We noticed staring spells when she was a toddler. All of her therapists blamed the staring on Autism and/or trying to avoid therapy. We thought we were so on top of things....In Spring 2008 I saw a story on Good Morning America about kids with seizure disorders being misdiagnosed as having Autism. The message was get your kid tested just to be sure and so I immediately made an appointment with a Neurologist. The Neurologist was skeptical despite the story and a video tape of the staring that I provided. I had to push really hard for her to order an EEG. She ordered only a 45 minute EEG for Melodi. Sure enough they found that the staring spells were actually seizures. Melodi was immediately put on anti seizure medication and an MRI revealed no brain damage. We don't know why Melodi has the seizures but we do know that she became a whole new child once we got them under control. Shortly after going on the medication she began talking more than ever (she was almost 4 w/ little language up to that point). She also became more engaged in the world around her, less frustrated and she started sleeping through the night. The initial diagnosis was devastating to hear but it's been a huge blessing. We tried discussing Melodi's lack of progress and motivation as well as need for constant prompts to complete basic activities with the school system. They blamed all on the Autism and still would be doing so if we had not sought private help. I emphasize again not to rely on the schools to help you, they don't want to know all the issues because then they are obligated to help. The Neurologist told us not to expect real improvements with the "autism" but we've seen otherwise. I now tell all parents dealing with Autism to see a Neurologist and push for an EEG. You never know what they might find.
I hope that this information is helpful to someone, somewhere. Thanks for reading.
-Applied Behavioral Analysis
-Speech Therapy
-Occupational Therapy
-Physical Therapy
-Social Skills Training
-Therapeutic Listening (The Listening Program)
We also learned last year that the girls have additional disabilities beyond Autism. These incluce Auditory Processing Disorder, Sensory Processing Disorder, Anxiety Disorder and Seizure Disorder. Many of these things were blamed for years as being part of Autism but actually are seperate. It has been amazing to watch the girls improve rapidly once we learned of the additional disorders and needs.
I'd like to dedicate today's blog to Auditory Processing Disorder and Seizure Disorder.
Madilyn has Auditory Processing Disorder. In a nutshell it takes her brain longer to process language and what is going on in the world around her. For years she would cover her ears, become anxious and at times scream. This was blamed as part of Autism. Fortunately we saw a news show about APD and decided to investigate. We took her to an Audiologist for the diagnosis. It took Madilyn nearly a year to be comfortable enough with the Audiologist for the testing. We began Therapeutic Listening nightly (music therapy) and within 6 weeks saw major improvements. In May 2008 the school system told us that Madilyn could only handle being in a regular education classroom for 20 minutes a day. We started Therapeutic Listening in August 2008 and by the end of September 2008 she was able to spend the bulk of her day in the regular ed class. She has been able to maintain placement in regular ed and now attends our neighborhood school. We had discussed the possibility of Auditory Processing with the school system and they initially blamed everything on Autism. We pushed harder and they finally did some tests to pacify us. They found that there was no problem, it was only after we went to a private audiologist that we got real answers. My point is don't rely on the school system to look for problems/solutions or test for them, the more they find the more they have to provide and they want to provide as little as possible.
Melodi has a Seizure Disorder. We noticed staring spells when she was a toddler. All of her therapists blamed the staring on Autism and/or trying to avoid therapy. We thought we were so on top of things....In Spring 2008 I saw a story on Good Morning America about kids with seizure disorders being misdiagnosed as having Autism. The message was get your kid tested just to be sure and so I immediately made an appointment with a Neurologist. The Neurologist was skeptical despite the story and a video tape of the staring that I provided. I had to push really hard for her to order an EEG. She ordered only a 45 minute EEG for Melodi. Sure enough they found that the staring spells were actually seizures. Melodi was immediately put on anti seizure medication and an MRI revealed no brain damage. We don't know why Melodi has the seizures but we do know that she became a whole new child once we got them under control. Shortly after going on the medication she began talking more than ever (she was almost 4 w/ little language up to that point). She also became more engaged in the world around her, less frustrated and she started sleeping through the night. The initial diagnosis was devastating to hear but it's been a huge blessing. We tried discussing Melodi's lack of progress and motivation as well as need for constant prompts to complete basic activities with the school system. They blamed all on the Autism and still would be doing so if we had not sought private help. I emphasize again not to rely on the schools to help you, they don't want to know all the issues because then they are obligated to help. The Neurologist told us not to expect real improvements with the "autism" but we've seen otherwise. I now tell all parents dealing with Autism to see a Neurologist and push for an EEG. You never know what they might find.
I hope that this information is helpful to someone, somewhere. Thanks for reading.
Monday, September 28, 2009
Welcome
Thanks for coming. Where to begin....I'm supposed to be cleaning and dejunking today but I'm here instead.
I am dedicating this blog to my beautiful family and my extra special kids. I'm hopeful that the sharing of my experiences can bring laughter somedays and peace/comfort to those that might need it.
9/28/09 - Our History with Autism....
Life is good overall at the Wallace house. We have our struggles and it's not always fun to deal with the kids disabilities but we survive and the good days far outweigh the bad at this point. Our lives changed dramatically in 2005 when Madilyn was diagnosed with Autism and then again in 2007 when Melodi was diagnosed. I remember crying alot, wondering if things would ever get better. My sweet friend Laura Campbell who has two older boys with Autism would comfort me and tell me that things would get better someday. I wasn't sure I believed her but got to work. I dedicated most of my time to whatever the kids needed. Therapies are expensive, too expensive and there were times I wondered how we would do therapy x 2. Mark has a good paying job and we are very frugal by nature but still we worried. I knew I needed to help the kids but I also needed to help financially if I could so I did the paperwork for our home based business in the middle of the night. We needed $25k to send Madilyn to the special autism school for 1 year (yes you heard that right $25k). We were really blessed the year that I worked in the middle of the night to earn extra money. Our business did the best it had ever done and we were able to earn exactly $25k - funny how that happens :). Fortunately Madilyn didn't need the special schooling after all and we were able to put the money in the bank for other uses but the whole experience taught me many lessons about sacrifice, doing your very best and the tender mercies of the lord. It's been a long journey with the kids full of ups and downs, laughter and tears, worry and more worry. It's not a journey that I would have chosen myself but it's a journey that I can now look back on and in some ways cherish. It's a journey that has brought me pure joy by teaching me to appreciate the simple things and celebrate the littlest of accomplishments. It's a journey that has taught me patience, compassion and flexibility. It's a journey that has taught me to speak up and advocate on behalf of my own children and others even when it's uncomfortable or unpopular. Finally it's taught me to rely on my Heavenly Father more than ever before. The days are not as dark anymore and I'm finally able to look back and see how far we have come. We are now at the point that the girls are starting to do less therapies and more normal kids things. I am now able to help other families rather than just worry about my own. My friend Laura was right, it does get better someday.
I am dedicating this blog to my beautiful family and my extra special kids. I'm hopeful that the sharing of my experiences can bring laughter somedays and peace/comfort to those that might need it.
9/28/09 - Our History with Autism....
Life is good overall at the Wallace house. We have our struggles and it's not always fun to deal with the kids disabilities but we survive and the good days far outweigh the bad at this point. Our lives changed dramatically in 2005 when Madilyn was diagnosed with Autism and then again in 2007 when Melodi was diagnosed. I remember crying alot, wondering if things would ever get better. My sweet friend Laura Campbell who has two older boys with Autism would comfort me and tell me that things would get better someday. I wasn't sure I believed her but got to work. I dedicated most of my time to whatever the kids needed. Therapies are expensive, too expensive and there were times I wondered how we would do therapy x 2. Mark has a good paying job and we are very frugal by nature but still we worried. I knew I needed to help the kids but I also needed to help financially if I could so I did the paperwork for our home based business in the middle of the night. We needed $25k to send Madilyn to the special autism school for 1 year (yes you heard that right $25k). We were really blessed the year that I worked in the middle of the night to earn extra money. Our business did the best it had ever done and we were able to earn exactly $25k - funny how that happens :). Fortunately Madilyn didn't need the special schooling after all and we were able to put the money in the bank for other uses but the whole experience taught me many lessons about sacrifice, doing your very best and the tender mercies of the lord. It's been a long journey with the kids full of ups and downs, laughter and tears, worry and more worry. It's not a journey that I would have chosen myself but it's a journey that I can now look back on and in some ways cherish. It's a journey that has brought me pure joy by teaching me to appreciate the simple things and celebrate the littlest of accomplishments. It's a journey that has taught me patience, compassion and flexibility. It's a journey that has taught me to speak up and advocate on behalf of my own children and others even when it's uncomfortable or unpopular. Finally it's taught me to rely on my Heavenly Father more than ever before. The days are not as dark anymore and I'm finally able to look back and see how far we have come. We are now at the point that the girls are starting to do less therapies and more normal kids things. I am now able to help other families rather than just worry about my own. My friend Laura was right, it does get better someday.
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