I apologize for my lack of blogging here. It's been a little crazy with so much going on. Andrew went to the Shriner's Hospital in Greenville, SC on 10/05/2011 for an evaluation by a pediatric orthopedist. They fitted him for his AFO's (braces). They also advised me that his tibias are curved causing his feet point downward and turn in. They are hoping that his growth will correct it by the time he's 6 years old. If not, surgery will be considered to correct it. However, they don't seem to think he will need to wear the AFO's for very long, which are for another issue. His heel cords are hypertonic (tight) causing some instability. His hypotonia was also confirmed. I was very pleased with them. They were great and were even able to cast him for the AFO's without using the saw to cut it. It was definitely worth the drive. We will be returning for a follow-up evaluation in 6 months.
He has adjusted to his preschool very well. He is attending an EC Prek 3 days/week for children ages 3-5 through our local school system. They have recently evaluated him for an augmentative communication device or to decide on a form of communication to work with him to allow him to have a way to communicate his basic wants and needs. Hopefully we will hear from the evaluation soon.
He continues to have his good days and bad days as well as good nights and bad nights. We are looking into getting him a safety bed for his safety and my ability to get some sleep. It is not safe for him to be up during the night without adult supervision. However, these beds are extremely expensive ($5-6,000). I really can't put a price on his safety, so I'm exploring options to be able to get this much needed bed for him. If there's anyone out there that has received one of these beds, please contact me with any information and let me know how well the bed has worked for you. It's very expensive caring for a child, or in our case 2 children, with special needs. If we were to provide everything our boys needed, we would be bankrupt by now. I spend a lot of time searching for any services possible for our boys. It's sad to think that we live in America where services are available to help our boys and cannot access them because we are not wealthy enough to pay for them. Our country needs to do a better job providing for our disabled children. Middle class families cannot afford to provide the appropriate care these children need and many go without needed services that can make an enormous impact on their future outcomes. Private insurance refuses to cover much needed therapies and care that these children need. The real tragedy is, if I was to turn my children over to the state, they would receive better health care and much needed therapies than they do through private insurance. (Which, by the way I would never do). Okay, now I'm done venting about that issue.
Lately, I have been putting a lot of time into my older son's educational issues. As I discussed earlier he has disabilities as well, but they are not to the extent as Andrew's. However, I still have to make sure he is getting everything he needs for him to reach his full development and potential. There are times that it's difficult keeping up with the issues that need to be taken care of for both boys at the same time. I'm having difficulty with the school not providing the necessary supports for my son to receive an adequate education according to the laws. It's amazing how so many of our educators are not aware of the laws in place for children with disabilities. They are allowing special education teachers to write Individual Education Plans that are completely untrained to do so. This results in IEP's that are not providing an appropriate education as outlined according to the laws. I have been spending a lot of time advocating for him. I advise anyone that is fighting for the educational rights for their disabled child to not give up. If you don't advocate for your child, no one will. Advocating for your child takes a lot of time and research. I'm realizing that sometimes we have to point out particular laws to the school to get what needs to be done. Until I get things resolved for him my time may be limited on blogging. However, I am going to try to do better to keep everyone up to date on Andrew's journey.
Sunday, October 30, 2011
Sunday, October 23, 2011
What Andrew would say...
1. My character is not defined by my 'dis'abilities...
Are you a person with thoughts, feelings, and many talents, or are you just overweight, myopic (wear glasses), or klutzy (uncoordinated not good at sports)? Even thought I'm a differently-abled person I have thoughts, feelings, and the ability to teach so much.
2. My name is Andrew, not my brother Matthew...
Please don't compare me to my brother. I am a completely different person with different abilities just like anyone else. I will develop at the pace God created me to, not my brother. Just because my brother also has disabilities doesn't mean that I will follow his same development.
3. Please don't discriminate me because my abilities are different...
Allow me the same opportunities to enhance my development as my typical peers. Please don't judge me by my different abilities. Not only can I benefit from spending time with my typical peers, they can also learn so much from me. It's never too early to teach acceptance. Some adults are still having a hard time learning it. I deserve a chance before judging me. By not allowing me to participate you not only take the opportunity away from me, but others as well. Discrimination doesn't just hurt me and my family, it also hurts the community. Please don't take blessings away from others by not giving me the same opportunities as them.
4. My sensory perceptions are disordered...
This means the ordinary sights, sounds, smells, tastes, and touches or everyday life 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'm really just trying to defend myself.
5. Please remember to distinguish between won't (choose not to) and can't (I'm not able to)...
Language is difficult for me. It isn't that I don't listen, it's that I can't understand you.
6. Be patient with my limited communication ability...
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 by ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.
7. I am visually oriented...
because language is so difficult for me. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition help me learn. I have already proven this to my parents, teachers, and therapists. Patience, patience, patience........
8. Please help me with social interactions...
It may look like I don't want to play with the other kids, but sometimes it's just I simply don't know how to. I need opportunities to spend time with my peers to help me develop socially. Please don't take these opportunities away from me.
9. Try to identify what triggers my meltdowns....
Meltdowns, 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.
10. Love me unconditionally....
especially if you are a family member. Banish thoughts like, "If he would just..." and "Why can't he..." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. Comments like, "He's no fun, because he doesn't do anything," should not be made when you haven't made an effort to get to know me. I don't deserve to be loved any less. I did not choose to be differently-abled from my peers. But remember that it is happening to me, not you. Without your support, my chances of a successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are more than you might think. I promise you----I am worth it!
authors: Amy Oster and Ellen Notbohm
Are you a person with thoughts, feelings, and many talents, or are you just overweight, myopic (wear glasses), or klutzy (uncoordinated not good at sports)? Even thought I'm a differently-abled person I have thoughts, feelings, and the ability to teach so much.
2. My name is Andrew, not my brother Matthew...
Please don't compare me to my brother. I am a completely different person with different abilities just like anyone else. I will develop at the pace God created me to, not my brother. Just because my brother also has disabilities doesn't mean that I will follow his same development.
3. Please don't discriminate me because my abilities are different...
Allow me the same opportunities to enhance my development as my typical peers. Please don't judge me by my different abilities. Not only can I benefit from spending time with my typical peers, they can also learn so much from me. It's never too early to teach acceptance. Some adults are still having a hard time learning it. I deserve a chance before judging me. By not allowing me to participate you not only take the opportunity away from me, but others as well. Discrimination doesn't just hurt me and my family, it also hurts the community. Please don't take blessings away from others by not giving me the same opportunities as them.
4. My sensory perceptions are disordered...
This means the ordinary sights, sounds, smells, tastes, and touches or everyday life 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'm really just trying to defend myself.
5. Please remember to distinguish between won't (choose not to) and can't (I'm not able to)...
Language is difficult for me. It isn't that I don't listen, it's that I can't understand you.
6. Be patient with my limited communication ability...
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 by ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.
7. I am visually oriented...
because language is so difficult for me. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition help me learn. I have already proven this to my parents, teachers, and therapists. Patience, patience, patience........
8. Please help me with social interactions...
It may look like I don't want to play with the other kids, but sometimes it's just I simply don't know how to. I need opportunities to spend time with my peers to help me develop socially. Please don't take these opportunities away from me.
9. Try to identify what triggers my meltdowns....
Meltdowns, 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.
10. Love me unconditionally....
especially if you are a family member. Banish thoughts like, "If he would just..." and "Why can't he..." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. Comments like, "He's no fun, because he doesn't do anything," should not be made when you haven't made an effort to get to know me. I don't deserve to be loved any less. I did not choose to be differently-abled from my peers. But remember that it is happening to me, not you. Without your support, my chances of a successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are more than you might think. I promise you----I am worth it!
authors: Amy Oster and Ellen Notbohm
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