I meant to write this a few days ago but I've been so busy with everything.
I went to the grocery store the other night to get some stuff for the kids for breakfast and for dinners and realized I hate grocery shopping. It isn't just the thought that groceries are so expensive its that I have no idea on what to buy. Danny and I both work day jobs and get home around dinner time so there isn't much time to cook. We usually end up with the box dinners that are pretty easy to put together. The kids have generally already eaten (but may eat again). When we have money and don't want to cook, we order a pizza. Most kids like pizza, mine don't. Allison may eat it once in a while but Christopher won't touch it.
Box dinners do get boring after a while. The other problem we have is that Christopher only eats a handful of things. He eats hamburgers and nuggets, but only from McDonald's. Spaghetti is usually pretty successful. He also eats some hamburger helper. He really likes bananas and corn. He used to eat other things and we try things whenever we fix it, but try to keep a can of spaghetti-o's on hand. Breakfast has always been our easiest meal. Its not easy to get him to eat but he will eat the most variety of breakfast foods. I spend some mornings trying to get him to eat before his van comes and end up chasing him around the house with his breakfast.
So what did I buy at the grocery store? I bought frozen waffles, pancakes and french toast sticks. I also got the box dinners, milk, sugar, bread and cheese. The kids have breakfast and we have some quick dinners to fix.
The glutein & cassein free diets (GFCF) are popular among the autistic population. We did do a brief trial removing glutein but it wasn't for us. Could you imagine what I'd be able to buy if went GFCF? Hopefully, we won't need to change his diet.
Walk 2011
Wednesday, May 18, 2011
Monday, May 9, 2011
Not the A-word again....
I wear my scarlet letter proudly. I openly share my experience and our success with Christopher. I am a huge advocate of early identification. I think the wait-and-see approach is one of the worse things you can do to a child with difficulties.
Parents can not rely on their doctors to sense something is wrong. Think about how much time the doctor actually spends in the room with you and your child during the routine well-child check-ups. When they ask you the questions, how do you answer? Do you respond with what you know they expect? And when you do see a problem and bring it to the doctor's attention what is the response? Before I had a child that had no out of the ordinary needs, our pediatrician was just fine. When I started to question things and had to be more pro-active in Christopher's care his pediatrician was not so great anymore. Pediatricians are very difficult to obtain in this area. Unless your child is born under the care of a pediatrician good luck getting or switching. Fortunately, there are several pediatricians in the practice we use so I was able to start scheduling with a different doctor. It was amazing to have a doctor listen and converse the first time I took him in to this different doctor. He listens to my concerns and things I have researched and is able to speak to me normally. I guess the point of this tangent is that if you see something you are not sure about, learn more and don't be ashamed to seek help.
I took Christopher to his sitter's this morning and ended up in another one of those conversations. Usually the conversation starts with "how did you know Christopher had Autism" but this one was a little different. This sitter has cared for Christopher since I returned to work after his birth. She has seen the progress he has made over the last year. She saw him "at his worst" when the symptoms were more apparent. This conversation was more "how do I tell another parent that I think their child has Autism". People come across kids at various points in their lives. There are some jobs, like child care that will place you with kids more often. It can be a touchy subject to try to bring up with a parent. After a brief conversation, my suggestion was to suggest to the parents a hearing test or speech evaluation. This other child has other symptoms but focus on the apparent ones. He is almost 2 and doesn't respond to his name or have any words. If the parents will start there, his evaluators should notice the other stuff and may be able to approach it easier. Parents will respond in different ways. There may be relief that someone else has seen the problem too. There may be anger at the thought of their child being different.
After a diagnosis or a suggestion of a diagnosis, parents will go through the stages of grief. The child has not changed but the parent's view may have. The dreams are different. Instead of the dream for graduation, college, marriage and kids the dreams may be more short-term. The dream may be for the child to learn to say a couple of words, to not have melt-downs, potty training, using silverware, playing independently, playing with others, to give hugs and kisses without prompts and a number of other things. The bigger dreams are still there but I try not to think about those. We have no idea how far Christopher will be able to go. My furthest goal (or worry) right now is probably trying to figure out if he will need a special ed classroom or if his needs will be met in general ed for Kindergarten and this is 2 years away.
I will continue to be a resource to those that need me. I will advocate for early identification and intervention. I will continue to dread the next time a family is faced with the possibility their child has Autism. I will continue to let them know their lives are not over and their child is the same one they loved yesterday.
Parents can not rely on their doctors to sense something is wrong. Think about how much time the doctor actually spends in the room with you and your child during the routine well-child check-ups. When they ask you the questions, how do you answer? Do you respond with what you know they expect? And when you do see a problem and bring it to the doctor's attention what is the response? Before I had a child that had no out of the ordinary needs, our pediatrician was just fine. When I started to question things and had to be more pro-active in Christopher's care his pediatrician was not so great anymore. Pediatricians are very difficult to obtain in this area. Unless your child is born under the care of a pediatrician good luck getting or switching. Fortunately, there are several pediatricians in the practice we use so I was able to start scheduling with a different doctor. It was amazing to have a doctor listen and converse the first time I took him in to this different doctor. He listens to my concerns and things I have researched and is able to speak to me normally. I guess the point of this tangent is that if you see something you are not sure about, learn more and don't be ashamed to seek help.
I took Christopher to his sitter's this morning and ended up in another one of those conversations. Usually the conversation starts with "how did you know Christopher had Autism" but this one was a little different. This sitter has cared for Christopher since I returned to work after his birth. She has seen the progress he has made over the last year. She saw him "at his worst" when the symptoms were more apparent. This conversation was more "how do I tell another parent that I think their child has Autism". People come across kids at various points in their lives. There are some jobs, like child care that will place you with kids more often. It can be a touchy subject to try to bring up with a parent. After a brief conversation, my suggestion was to suggest to the parents a hearing test or speech evaluation. This other child has other symptoms but focus on the apparent ones. He is almost 2 and doesn't respond to his name or have any words. If the parents will start there, his evaluators should notice the other stuff and may be able to approach it easier. Parents will respond in different ways. There may be relief that someone else has seen the problem too. There may be anger at the thought of their child being different.
After a diagnosis or a suggestion of a diagnosis, parents will go through the stages of grief. The child has not changed but the parent's view may have. The dreams are different. Instead of the dream for graduation, college, marriage and kids the dreams may be more short-term. The dream may be for the child to learn to say a couple of words, to not have melt-downs, potty training, using silverware, playing independently, playing with others, to give hugs and kisses without prompts and a number of other things. The bigger dreams are still there but I try not to think about those. We have no idea how far Christopher will be able to go. My furthest goal (or worry) right now is probably trying to figure out if he will need a special ed classroom or if his needs will be met in general ed for Kindergarten and this is 2 years away.
I will continue to be a resource to those that need me. I will advocate for early identification and intervention. I will continue to dread the next time a family is faced with the possibility their child has Autism. I will continue to let them know their lives are not over and their child is the same one they loved yesterday.
Saturday, May 7, 2011
Getting ready for war?
Growing up in church and going to camp you hear about putting on the armor of God. Each piece has a different meaning but the one that stands out (and the only one I can recall from memory) is that the Bible is your sword. There is also armor that must be put on for parents with a child with a disability.
The sword (or AK-47) for this person would be the Americans with Disabilities Act (ADA). The ADA is written to ensure equal opportunity for people with disabilities in various aspects of their life. The ADA has crossed my mind a few times within the last 24 hours. There is a possibility we will be trying to fly to Florida in the near future. Flying with children can be difficult itself but add in a touch of Autism, not knowing how he will react to everything and a heightened sensitivity of the airline and passengers to disruptions. I foresee some prepatory communications with the airline and determining what I need to do to make it an enjoyable trip for all of us. Another incident happened this morning when my husband commented that he didn't know if he would have the opportunity to coach Christopher in soccer. My immediate response was that he could play soccer and we'd hire some high school kid to be on the field with him as his one-on-one and the league would have to make accomodations.
Another piece of armor would be night vision goggles. These aren't for us to see our children not sleeping or to watch them sleep after a particularly stressful day but a tool to see things through their eyes. When you have a non-verbal child or child with limited communication skills you have to learn to see through their perspective to understand them and their desires. When your child is crying for no apparent reason or saying something you can barely understand, you have to look at it from their point of view to understand it.
We also need to be equipped with a good communication system. Many times the parents are the only voice of the child with disabilities. It is our responsibility to make sure their needs are being met and that they are treated properly. The communication system also includes codes and signals. We have to be cued into our children for signs of an upcoming meltdown and that they may need something. We also have to be their voice and at times their translators.
The last thing I'm going to discuss in this post is the uniform of normalcy. (There may be future references to this topic but I'm going to stop here). Parents teach every child how to behave but when there is autism involved it is a little different. Most children will have an emotional response when they see someone crying or laughing. The child with autism may require a lot of prompting to take notice and then would not know how to respond unless taught. It also takes longer to teach appropriate behavior. Many parents avoid situations that will be difficult for their child. We avoid going to certain places to eat because of the wait time involved and it does not have the food choices he will eat.
So there is some initial equipment needed to fight this war that I wake up to every day. Most days its pretty easy but I live, eat and breathe autism. It is a part of who I am.
The sword (or AK-47) for this person would be the Americans with Disabilities Act (ADA). The ADA is written to ensure equal opportunity for people with disabilities in various aspects of their life. The ADA has crossed my mind a few times within the last 24 hours. There is a possibility we will be trying to fly to Florida in the near future. Flying with children can be difficult itself but add in a touch of Autism, not knowing how he will react to everything and a heightened sensitivity of the airline and passengers to disruptions. I foresee some prepatory communications with the airline and determining what I need to do to make it an enjoyable trip for all of us. Another incident happened this morning when my husband commented that he didn't know if he would have the opportunity to coach Christopher in soccer. My immediate response was that he could play soccer and we'd hire some high school kid to be on the field with him as his one-on-one and the league would have to make accomodations.
Another piece of armor would be night vision goggles. These aren't for us to see our children not sleeping or to watch them sleep after a particularly stressful day but a tool to see things through their eyes. When you have a non-verbal child or child with limited communication skills you have to learn to see through their perspective to understand them and their desires. When your child is crying for no apparent reason or saying something you can barely understand, you have to look at it from their point of view to understand it.
We also need to be equipped with a good communication system. Many times the parents are the only voice of the child with disabilities. It is our responsibility to make sure their needs are being met and that they are treated properly. The communication system also includes codes and signals. We have to be cued into our children for signs of an upcoming meltdown and that they may need something. We also have to be their voice and at times their translators.
The last thing I'm going to discuss in this post is the uniform of normalcy. (There may be future references to this topic but I'm going to stop here). Parents teach every child how to behave but when there is autism involved it is a little different. Most children will have an emotional response when they see someone crying or laughing. The child with autism may require a lot of prompting to take notice and then would not know how to respond unless taught. It also takes longer to teach appropriate behavior. Many parents avoid situations that will be difficult for their child. We avoid going to certain places to eat because of the wait time involved and it does not have the food choices he will eat.
So there is some initial equipment needed to fight this war that I wake up to every day. Most days its pretty easy but I live, eat and breathe autism. It is a part of who I am.
Thursday, May 5, 2011
Child Care
Every parent has the struggles of finding appropriate child care for their children so they can work. What happens when you have a special needs child? I have seen a lot of families struggle to get some much needed adult time but are unable to rely on anyone to take care of their child. This problem still is not much out of the ordinary for me because Christopher is still a toddler and all toddlers need child care if both parents work.
However, Christopher attends a special needs pre-school and it is only half day. How is a parent supposed to work a 9-5 job and get their child to and from school? Fortunately the school does offer transportation for the kids in the special needs pre-school, where they don't for the regular pre-k. I stressed over this last fall as I prepared for Christopher's transition. My full day sitter is located out of state so there was no way that was going to work for the school transport. Finally I located a neighbor (parent of one of Allison's friends) to watch him after school. She is less than 1/2 mile from us so the transport was able to pick him up at home at an early 7:30 am and drop him off at the sitters before lunch. This sitter just told me that she will not be continuing after this school year ends. And its back to square one.
We have found a prospective sitter (through a friend of mom's). Unfortunately she is not 1/2 mile up the road so we can't get pick-up and drop-off transport. We will have to drop Christopher off at school in the morning and the van will take him to the new sitter's. I guess it is worth it because she has agreed to keep our current financial arrangements. (We do get a pretty good deal).
I love that the school is continuing his education since Birth to Three ended and that there is a Pre-K program in the county but these half-days are very tough. I'm not sure how people manage it. I guess they do it just like we are.
I wonder who will be getting up 4 days a week to get Christopher to school by 8 am.....
However, Christopher attends a special needs pre-school and it is only half day. How is a parent supposed to work a 9-5 job and get their child to and from school? Fortunately the school does offer transportation for the kids in the special needs pre-school, where they don't for the regular pre-k. I stressed over this last fall as I prepared for Christopher's transition. My full day sitter is located out of state so there was no way that was going to work for the school transport. Finally I located a neighbor (parent of one of Allison's friends) to watch him after school. She is less than 1/2 mile from us so the transport was able to pick him up at home at an early 7:30 am and drop him off at the sitters before lunch. This sitter just told me that she will not be continuing after this school year ends. And its back to square one.
We have found a prospective sitter (through a friend of mom's). Unfortunately she is not 1/2 mile up the road so we can't get pick-up and drop-off transport. We will have to drop Christopher off at school in the morning and the van will take him to the new sitter's. I guess it is worth it because she has agreed to keep our current financial arrangements. (We do get a pretty good deal).
I love that the school is continuing his education since Birth to Three ended and that there is a Pre-K program in the county but these half-days are very tough. I'm not sure how people manage it. I guess they do it just like we are.
I wonder who will be getting up 4 days a week to get Christopher to school by 8 am.....
Sunday, May 1, 2011
Another Sunday
We had another Sunday thrown out of routine and had to make adjustments. A lot of times Autism is a very routine oriented disorder. We are fortunate to not be a very routine family. We actually make efforts to avoid routines because of the risk for it to become ritualistic.
We left for church a little early because I knew I had to get gas along the way. This in itself is out of routine because Mammaw was out of town and we were not leaving in her car. Christopher did pretty well understanding that "Mammaw was all gone" and we were going in Mommy's car. I chose to go to the Flying J because the gas was nine cents cheaper per gallon and I had a huge fill-up to do. I guess it only saved me a couple of dollars to wait the 10-15 minutes but when the bill is going to hit over $50 the couple of dollars is worth it. So even though we left early, we was late getting to church. (Let me also say it took a little bit of chasing to get Christopher to put on clothes, Oh the phase we are in).
I took Christopher to class and he didn't want to go in. I took him into service with me to get through music. The awesome thing was, even before Christopher started to clap after the first song ended, others were clapping. Apparently, Christopher started a trend a couple of weeks ago for people to clap when a song was particularly moving. I felt a whole lot better about having him in service today. He still clapped and made some noise but I didn't fret over it. And amazingly, after the singing I carried him to class and he went in without incident.
Christopher was down for his nap when Mammaw came home so after he came in to see me upon waking I said Mammaw was home. He didn't believe me initially but when he checked the window he got SOOOO excited. We got ready and headed down to Mammaw's. He RAN to her door and RAN to give her a huge hug. Then he was done, but we stayed for a while anyways.
Overall, it was a pretty good day. Allison is doing well in her cartwheel class. Christopher stayed partially dressed most of the time. And I felt good having him at church and not as anxious as last time. He even settled down after a little while and let me hold him without wrestling.
Ahhhhh.......life is good......
We left for church a little early because I knew I had to get gas along the way. This in itself is out of routine because Mammaw was out of town and we were not leaving in her car. Christopher did pretty well understanding that "Mammaw was all gone" and we were going in Mommy's car. I chose to go to the Flying J because the gas was nine cents cheaper per gallon and I had a huge fill-up to do. I guess it only saved me a couple of dollars to wait the 10-15 minutes but when the bill is going to hit over $50 the couple of dollars is worth it. So even though we left early, we was late getting to church. (Let me also say it took a little bit of chasing to get Christopher to put on clothes, Oh the phase we are in).
I took Christopher to class and he didn't want to go in. I took him into service with me to get through music. The awesome thing was, even before Christopher started to clap after the first song ended, others were clapping. Apparently, Christopher started a trend a couple of weeks ago for people to clap when a song was particularly moving. I felt a whole lot better about having him in service today. He still clapped and made some noise but I didn't fret over it. And amazingly, after the singing I carried him to class and he went in without incident.
Christopher was down for his nap when Mammaw came home so after he came in to see me upon waking I said Mammaw was home. He didn't believe me initially but when he checked the window he got SOOOO excited. We got ready and headed down to Mammaw's. He RAN to her door and RAN to give her a huge hug. Then he was done, but we stayed for a while anyways.
Overall, it was a pretty good day. Allison is doing well in her cartwheel class. Christopher stayed partially dressed most of the time. And I felt good having him at church and not as anxious as last time. He even settled down after a little while and let me hold him without wrestling.
Ahhhhh.......life is good......
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