Wednesday, July 29, 2009
Tuesday, July 21, 2009
Baby Brother Qualifies for Speech
This morning we had the IFSP meeting for Jon with the birth to 3 folks. He is much more behind in speech than I ever imagined. Although he will surprise us with saying some things way beyond what he should be, he is still very delayed. I am talking 3-6 months here, Jon is 2 years old. Yeah, not easy to hear. Just when I thought he was doing so much more than his brothers and I had some hope I get this. Starting in 2 days, I will be bringing him to a speech class that is led by a speech therapist and I have to attend and work with him. This will be once a week for an hour. Other concerns were discussed such as his play behavior, the spinning, the toe walking, regression. It was recommended that I start the SSI application process and start getting more evaluations done on him. As much as this sucks I am ready to face it. It's best for him to get this taken care of quickly so maybe it won't progress too far. On the other hand I am really tempted to see how he does with this speech class and go from there. Some ways I am hoping that all of this is jumping the gun. After going through this twice, at least I know what to expect which makes it a little easier. Nothing needs to be decided right this second so I can give it some time. I know I will be guided.
Friday, July 17, 2009
The Joys of Bureaucracy...
Eric's therapy is funded by a state long term care waiver. This is wonderful in the fact that there are many states in the US where this is not available. I am very thankful that we live here and have this opportunity. The down sides of this are the huge amounts of paperwork, lots of miscommunication, many confusing rules and regulations, and the people who are processing all this paperwork and making all these rules know little to nothing about the jobs that the therapists do with these kids, what the parents have to deal with and autism in general.
I've been fuming about this since it was brought up a few weeks ago. Between not being home, computer problems, sickness and not being able to put my thoughts on this into an organized fashion has delayed my posting of this here. The therapists were taking Eric to the park across the street for the last few months for short times during his sessions when the weather permits. I have put many pictures up here from these outings and there are more stuck on my camera now (due to my PC shorting out the USB transfer cable). About 3 team meetings ago the therapists started talking about what they were doing with Eric at the park. The senior therapist said that going to the park would technically considered a community outing and that forms and approvals would be needed to go. There was some confusion, but the issue wasn't pushed. At the meeting the next week the line therapists were told to not take Eric to the park until the community outing was approved. I thought this shouldn't take any more than a couple of weeks. It took that long for approval for the therapists to attend haircuts. The senior therapist told me this could take months now that the state is involved in this. This is WI folks, winter comes here. It's known for that around here. By that time what good is this going to do? If we had playground equipment at home it would be ok to go out and use it but we can't go across the street to use the equipment at the park because it is public rather than private property. How many homes honestly have this type of equipment? We only have a front yard, not a back yard but this park makes up for that. So for now the therapists can play with Eric in our front yard, or take him for a walk around the block. They cannot stop anywhere for more than 5 seconds or it becomes a community outing. So if he sees a neighbor's dog and wants to go over and say hi that is a community outing. Wow.
The county has been getting stricter about community outings in the last few months, and just in the last month the state is now involved in this approval process. Why has this happened? Nobody knows for certain. There have been many opinions brought up on this matter. The county is standing by this being a "home based program". I get that. The down side is the home enviornment has its limits. There is only so much available here. He gets bored really fast. It is hard to work in the same place for hours without a change of scenery somewhere. But since the scientists have proven that this therapy is most effective for hours in the home enviornment, that is how it written in the rule books. No flexibilty what so ever. In order for the therapy provider to go into the schools in any way shape or form it takes even more paperwork and approvals. That is to limit duplication of services. There again, understandable but it sure makes it difficult when the school, medical professionals and therapy providers can't communicate. Believe me, I have been through that. Not fun. Another issue that has been brought up is liability. There were a couple of stupid people that did stupid things that led to severe injury and death to a child. I can understand that the state, nor anyone else wants to be sued. Nobody wants to see anyone hurt. What I don't get is how they think that these things can't happen while in the home. How is walking around the block any safer than going to a park? Some sicko could come into our front yard and hurt my kid. Yes, I know the park is a public place and you are in contact with all these people God forbid. It still don't make sense that they can go around the block if that is the case.
What is Eric losing out on from this? Going to the park is great reinforcement for Eric and a very effective sensory break for him. What little boy, or any child for that matter, doesn't need some time for large motor work and active play? This makes him happy, and easier for the the therapists to work with him and for him to do what he needs to do to progress. He is also going to miss the opportunity to play and interact with other children, and other people besides his family, teachers, and therapists. This is a taste of what the real world is like, and he can learn about proper social behavior and the consequenses if he don't. The adults that know him and work with him are forgiving if he doesn't wait his turn, or does not play as nice as he should. Other kids will call him on it and not play with him. While that is hard to see, it is how they learn. In the 3 years of intensive therapy they get all of this behavior training but we are told we have to wait until after we are done with these 3 years to go out into the community and use these skills on time and money that is not our own. It's like how we go to school for so many years and are taught so many cool things, but given very little to opportunity to apply any of this to real life. How much do we remember? It don't mean jack to teach these kids how to behave when they can't go out and use these skills with real people in the real world. The state will say that he has siblings in the home for peer interaction, along with school. That's real effective when they are nonverbal and have communication and sensory issues as well. School is for learning, not socializing. They think that anything involving applying the therapy has to be done on the family's time during the intensive phase. That is not easy when Eric is going to summer school, and full day during the school year as far as time is concerned. Never mind that I have to take his 2 younger brothers wherever we go. With another child on the spectrum and a very energetic 2 year old that is not as easy as it sounds.
This is getting long and I got the point across. I know this may look like a petty issue on the surface, and it still may be insignificant to some. I can see how this affects Eric, and is worth fighting for to me. Talking to the senior therapist about my concerns left me quite discouraged because she said this is a very big issue that would take a long time, cutting through a lot of red tape and all and all very difficult to change :-( We can hope right?
I've been fuming about this since it was brought up a few weeks ago. Between not being home, computer problems, sickness and not being able to put my thoughts on this into an organized fashion has delayed my posting of this here. The therapists were taking Eric to the park across the street for the last few months for short times during his sessions when the weather permits. I have put many pictures up here from these outings and there are more stuck on my camera now (due to my PC shorting out the USB transfer cable). About 3 team meetings ago the therapists started talking about what they were doing with Eric at the park. The senior therapist said that going to the park would technically considered a community outing and that forms and approvals would be needed to go. There was some confusion, but the issue wasn't pushed. At the meeting the next week the line therapists were told to not take Eric to the park until the community outing was approved. I thought this shouldn't take any more than a couple of weeks. It took that long for approval for the therapists to attend haircuts. The senior therapist told me this could take months now that the state is involved in this. This is WI folks, winter comes here. It's known for that around here. By that time what good is this going to do? If we had playground equipment at home it would be ok to go out and use it but we can't go across the street to use the equipment at the park because it is public rather than private property. How many homes honestly have this type of equipment? We only have a front yard, not a back yard but this park makes up for that. So for now the therapists can play with Eric in our front yard, or take him for a walk around the block. They cannot stop anywhere for more than 5 seconds or it becomes a community outing. So if he sees a neighbor's dog and wants to go over and say hi that is a community outing. Wow.
The county has been getting stricter about community outings in the last few months, and just in the last month the state is now involved in this approval process. Why has this happened? Nobody knows for certain. There have been many opinions brought up on this matter. The county is standing by this being a "home based program". I get that. The down side is the home enviornment has its limits. There is only so much available here. He gets bored really fast. It is hard to work in the same place for hours without a change of scenery somewhere. But since the scientists have proven that this therapy is most effective for hours in the home enviornment, that is how it written in the rule books. No flexibilty what so ever. In order for the therapy provider to go into the schools in any way shape or form it takes even more paperwork and approvals. That is to limit duplication of services. There again, understandable but it sure makes it difficult when the school, medical professionals and therapy providers can't communicate. Believe me, I have been through that. Not fun. Another issue that has been brought up is liability. There were a couple of stupid people that did stupid things that led to severe injury and death to a child. I can understand that the state, nor anyone else wants to be sued. Nobody wants to see anyone hurt. What I don't get is how they think that these things can't happen while in the home. How is walking around the block any safer than going to a park? Some sicko could come into our front yard and hurt my kid. Yes, I know the park is a public place and you are in contact with all these people God forbid. It still don't make sense that they can go around the block if that is the case.
What is Eric losing out on from this? Going to the park is great reinforcement for Eric and a very effective sensory break for him. What little boy, or any child for that matter, doesn't need some time for large motor work and active play? This makes him happy, and easier for the the therapists to work with him and for him to do what he needs to do to progress. He is also going to miss the opportunity to play and interact with other children, and other people besides his family, teachers, and therapists. This is a taste of what the real world is like, and he can learn about proper social behavior and the consequenses if he don't. The adults that know him and work with him are forgiving if he doesn't wait his turn, or does not play as nice as he should. Other kids will call him on it and not play with him. While that is hard to see, it is how they learn. In the 3 years of intensive therapy they get all of this behavior training but we are told we have to wait until after we are done with these 3 years to go out into the community and use these skills on time and money that is not our own. It's like how we go to school for so many years and are taught so many cool things, but given very little to opportunity to apply any of this to real life. How much do we remember? It don't mean jack to teach these kids how to behave when they can't go out and use these skills with real people in the real world. The state will say that he has siblings in the home for peer interaction, along with school. That's real effective when they are nonverbal and have communication and sensory issues as well. School is for learning, not socializing. They think that anything involving applying the therapy has to be done on the family's time during the intensive phase. That is not easy when Eric is going to summer school, and full day during the school year as far as time is concerned. Never mind that I have to take his 2 younger brothers wherever we go. With another child on the spectrum and a very energetic 2 year old that is not as easy as it sounds.
This is getting long and I got the point across. I know this may look like a petty issue on the surface, and it still may be insignificant to some. I can see how this affects Eric, and is worth fighting for to me. Talking to the senior therapist about my concerns left me quite discouraged because she said this is a very big issue that would take a long time, cutting through a lot of red tape and all and all very difficult to change :-( We can hope right?
I Was Talked Into It
Eric will be attempting the overnight at camp. We'll never know if he could handle it unless we try. There may be a situation coming in the next couple months where he may have to be able to spend a night without me there so it's a good place to start. The place is close enough to where I could pick him up if it just don't work out. I think I owe it to him to give him a chance although I honestly don't think he will handle it. That will be a night I won't be sleeping...
Thursday, July 16, 2009
Eric's Going To Camp
The acceptance letter came in the mail today. He will be going starting on Aug. 10th through Aug 13th from 10 am to 3 pm. This will be at the local YMCA facility. It will be traditional camp type activities. I think he will enjoy it. On the 14th they are taking the kids to a camp site overnight. This I am very nervous about. I really do not think he can handle this. On the other hand, he does need to be able to cope without me around all the time and learn to go to sleep without me by him. This may be a good opportunity for him but it may be just too much for him. It says in the letter he can opt out of this portion, which I am seriously considering. This camp is covered by a special needs grant and is free of charge for Eric, so that isn't an issue. It could end up being worse for me to handle than him, but decision on whether to take that chance. His teacher works for this program and recommened it for Eric. I know she would not suggest something that would not be a positive experience for him. Too bad I couldn't talk to her about this concern. I left a message with the director and will ask her about how this works, whether or not I can come get him if it just don't work out and if it would be better to just not do this. Either way I am sure he will have fun with the rest of this.
Nutritional Risks for Austistic Children.
Not that any of this is a surprise to me. Found this article on the Austim News. When Eric was first brought to the feeding clinic at CHW they did bloodwork and found he had a fatty acid deficiency. For a while I was putting cooking oil in his juice and he had to drink it, not nice looking. I can see where this would be an issue for many kids. The limited variety that some of these kids eat don't help matters any. This really scares me for Eric and Andy's health as time goes on. Andy is already chronically anemic. I can't get food with iron in him and he can't tolorate suppliments. The good news in this is the power of Omega 3 fish oils. Many friends, and I swear on these to help with depression and anxiety. I can see them helping with these children.
Wednesday, July 15, 2009
The Realities of Life With Special Needs Children
I was able to meet a wonderful woman named Allison Dix on Facebook who wrote this piece on her life as the mother of 3 children on the autism spectrum. The link to her blog is now on the side of my blog under friends and supporters. These are very special children. I love my boys with all my heart. That isn't to say this is easy. I had a very hard time with this a couple nights ago. I know now it is OK to feel that way, to want things different. It is how you handle what you have that counts. We have come this far together, we will make it through this. Thank you Allison for letting me share this with my friends.
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