I've been meaning to write this blog for a while but I'm just now getting around to it. Last weekend I lived every mother's worst nightmare. Was it different because Christopher is autistic? Hmmmm...probably not. I think the story is one that everyone has at some point whether the child is special needs or not.
I still had my second job (working overnight on the weekend) and had just laid down for my before work nap. (Yep, you read still had....meaning no longer have.) There was the normal noise as the kids are running around and Danny is yelling at them to be quiet. Soon after, Allison is back in the house. She is staying over at mammaw's and forgot some stuff. The next thing I hear is Danny yelling for Christopher. I check the windows to see the pool and down to mammaw's and I don't see him. I call to see if he had already made it down there and was inside but no luck. We all hit outside. Of course, Christopher has never responded to his name so why would he now. I send my mom to the neighbor's house, who is having a big get together and she yells back that they haven't seen him. I head the other direction through the neighbor's yard asking if they have seen a little boy. I make it back around to the "party house" and am relieved to see mom with Christopher. He had joined the other kids at the water hose playing and no one paid any mind to another kid. All of this probably only took about 10 minutes but it was the longest 10 minutes ever. Danny and I bring Christopher back home and get our nerves calmed and then head back over to party. I had planned to work my shift and quit at the end (cause I wasn't scheduled for over two weeks and could do a "notice") but decided it was a sign and sent a text to the supervisor that I was calling off and I'd get my resignation letter sent in.
So that covers the lost and found....but locked up.....I had already scheduled to have a fence put in at the side of the house when we lost Christopher. That fence is now up (minus the 2 gates) and I got my brother-in-law to move the porch rail from the side to block the front entrance. I want to make the front of the porch a gate but the rail looks nice. As soon as the gates get put up this week the kids will be able to play on the porch and in the side yard without the fear of them wondering off. Hopefully the dog will behave in the yard too and the kids can be out with her to throw sticks or whatever. We'll be able to open the front door this fall when its nice outside and the kids and dog can have the run of the place. (we'll have to hide the cat away so she doesn't get out.)
Walk 2011
Sunday, July 31, 2011
Sunday, July 17, 2011
I'm the mom
I was a bit skeptical when Christopher started pre-school after his birthday. My fears have slowly dissipated and I ended the school year feeling good about how it had gone. Summer school has been a totally different matter. For some reason the school and bus don't want to deal with me. Before the term started I expected to receive a phone call regarding the transportation. The call never came so I had to bug the bus garage to make sure Christopher wasn't going to get left at school. When he started in January the driver made an extra trip to meet myself and Christopher and have him get used to the van. I talked to the summer bus driver and it was like I was an annoyance in wanting to make sure everything was set up. Apparently he had called the sitter to arrange for Christopher's drop off. I ended up having to alter his transportation arrangement and called the bus garage to get it set up. I wasn't able to speak to the person in charge so I left a message about the change and was told I would get a call back. I left MY number. The change involved adding a pick-up for Christopher in the morning at his sitters. Did I get the call back? NO. The driver told the sitter that he would be there to get Christopher at 8:15. Don't you think I'd like to know this information. Anyway, its all settled and tomorrow is the first day of the new routine. You better believe I'll be noting this if I get any evaluations to fill out, but then they may just go right to the sitter.
Okay so now I'll move off of the bus and talk about school. Does anyone know what an IEP is? That magic little legal document that outlines the services. I give it a few days and no one is writing in the communication book. I write a note to please write in the communication book, still nothing. I have to call the teacher, and ended up getting a substitute to tell them to write in his communication book. Summer school is only 4-5 weeks long, who needs a substitute the second week? I let it slide. At least now she is writing in the book. When I talk to the sitter she requests a way to know if Christopher has eaten his lunch since he is so picky and she gives him something when he gets off of the bus. I write a somewhat lengthy blurb in his communication book about a particular achievement we have made and at the end I write a request to write how well he ate his lunch. Do you think they did that? NOPE! I also noted for them (because I'm about 100% sure they don't know what an IEP is) that Christopher has an allowance for an adaptable chair. She did let me know that they were not using the chair and he was sitting at the table. I will have to follow-up with his regular teacher about whether or not to use the chair when school starts in August.
My overall opinion of extended school year so far: a D-. That's being hopeful that he is receiving some socialization and educational services while he is there.
By the way, the achievement: I got Christopher to say his name in response to "who are you", although you wouldn't know he said Christopher.
Okay so now I'll move off of the bus and talk about school. Does anyone know what an IEP is? That magic little legal document that outlines the services. I give it a few days and no one is writing in the communication book. I write a note to please write in the communication book, still nothing. I have to call the teacher, and ended up getting a substitute to tell them to write in his communication book. Summer school is only 4-5 weeks long, who needs a substitute the second week? I let it slide. At least now she is writing in the book. When I talk to the sitter she requests a way to know if Christopher has eaten his lunch since he is so picky and she gives him something when he gets off of the bus. I write a somewhat lengthy blurb in his communication book about a particular achievement we have made and at the end I write a request to write how well he ate his lunch. Do you think they did that? NOPE! I also noted for them (because I'm about 100% sure they don't know what an IEP is) that Christopher has an allowance for an adaptable chair. She did let me know that they were not using the chair and he was sitting at the table. I will have to follow-up with his regular teacher about whether or not to use the chair when school starts in August.
My overall opinion of extended school year so far: a D-. That's being hopeful that he is receiving some socialization and educational services while he is there.
By the way, the achievement: I got Christopher to say his name in response to "who are you", although you wouldn't know he said Christopher.
Monday, July 4, 2011
July 4, 2011
We had a pretty awesome July 4th this year. We had family and friends join us for an afternoon of swimming, games, jumping, eating and fireworks. Christopher changed clothes several times throughout the day. He would get in the pool and then get dried off and dressed just to get back in again later. I don't think he ate much beyond chips and the family's secret zucchini chocolate bars. He even enjoyed the fireworks and was able to hold a sparkler without trying to touch the end. We did have to hold him back from trying to blow-out the lit fountains.
My 2 month old niece made an appearance and Christopher is infatuated with his little cousin. He likes to know where she is at all times and really wanted her to get down and play with him. He tried to pry mammaw's hands off of her so she could get down. Ever since our last visit, he has loved babies. He went to the park with Mammaw and every time a baby came by he was on it. I don't know if he thinks all babies are Scarlett or if he just likes babies. He will say "Where Baby At?" and "Baby all gone" in the correct situations. When the family was packing up to go home he kept hanging around their car and I had to go get him. As they pulled up the driveway, Christopher said "Baby all gone" and he was sad.
We haven't had a lot of success in getting Christopher to respond to "what's your name" or to get a reaction when we pretend to be sad or crying but he can put out that pouty lip and be the saddest boy in town when he wants to be.
Overall, it was a great day. I didn't feel stressed over making sure Christopher was where he was supposed to be. He either was or there was enough adults keeping an eye on things that I was alright. I head out of town in the morning for a week and will drop Allison off at her cousin's so it will be just Daddy and Christopher holding down the fort. Christopher goes back to school on Thursday so hopefully daddy can keep it all straight and get him to where he needs to go each day.
My 2 month old niece made an appearance and Christopher is infatuated with his little cousin. He likes to know where she is at all times and really wanted her to get down and play with him. He tried to pry mammaw's hands off of her so she could get down. Ever since our last visit, he has loved babies. He went to the park with Mammaw and every time a baby came by he was on it. I don't know if he thinks all babies are Scarlett or if he just likes babies. He will say "Where Baby At?" and "Baby all gone" in the correct situations. When the family was packing up to go home he kept hanging around their car and I had to go get him. As they pulled up the driveway, Christopher said "Baby all gone" and he was sad.
We haven't had a lot of success in getting Christopher to respond to "what's your name" or to get a reaction when we pretend to be sad or crying but he can put out that pouty lip and be the saddest boy in town when he wants to be.
Overall, it was a great day. I didn't feel stressed over making sure Christopher was where he was supposed to be. He either was or there was enough adults keeping an eye on things that I was alright. I head out of town in the morning for a week and will drop Allison off at her cousin's so it will be just Daddy and Christopher holding down the fort. Christopher goes back to school on Thursday so hopefully daddy can keep it all straight and get him to where he needs to go each day.
Sunday, July 3, 2011
Fun in the Sun
We finally had a nice day and was able to get into the pool. Christopher had a good time and didn't fight me too much. He did eventually get cold and was willing to get out of the pool if he could go down to Mammaw's. He has a little girlfriend that he likes to play with. He gets so sad when Tori goes home. We are having a fourth of July bash tomorrow with family and friends. Christopher will get to play with Tori some more. He liked the fireworks last year so hopefully it will be just as good this year. We don't go anywhere to watch since our neighbors usually set off some nice ones and I don't like crowds. I still get frustrated when I have Christopher out in different places.
He did do exceptionally well at lunch today. Usually I put him in a high chair to keep him contained but for some reason I didn't today. I let him set in a chair that didn't have him blocked in a corner. He sat through all of lunch and actually ate this time.
Check out the podcast that I joined my husband to do on lonelyfriday.org
He did do exceptionally well at lunch today. Usually I put him in a high chair to keep him contained but for some reason I didn't today. I let him set in a chair that didn't have him blocked in a corner. He sat through all of lunch and actually ate this time.
Check out the podcast that I joined my husband to do on lonelyfriday.org
Monday, June 20, 2011
Snips and Snails and Puppy Dog Tails
It has been a hectic couple of months. I'm in my final week of class and will have a one week break before starting the next class. I'm only doing one class next term to ease my stress levels. The kids finished school earlier this month. Christopher will start Summer School in a couple of weeks. I'll actually be out of town for work his first two days. Allison is away for Girl Scout Camp and is trying to talk us into sending her to church camp next week. With that over with, the meaning behind today's title:
What are Little Boys Made of? Some versions say Snips and others say Frogs. How does that apply to my world? Christopher has developed an imagination. At times, it seems to be a little extreme. He has started to pretend to be a puppy. He barks and tries to give puppy kisses, but I think I put a stop to that one. My mom lives behind our house down a hill and keeps Christopher until I get home from work. I've been calling to say send the kids up and I wait for him half-way down the hill. Christopher has been crawling up the hill on his hands and feet. He will stand every few feet to regain himself and then its back to all fours. I'll admit it has been cute. He looks up with those big eyes and gives a little bark and on he goes. Perhaps something a little more disturbing has been he wants to eat like a puppy too. This may include licking his plate but it has also included eating off of the floor. So far I can say thank goodness he isn't eating or drinking out of the dog's bowls.
Christopher has continued to be an inspiration at church. He causes some disruption but I take him to class after we sing so he will not disrupt the sermon. My goal is not to get attention for him but for him to tolerate following my direction and what I want him to do for that short time period. When we are consistent, he has been able to maintain good behavior for the entire singing time. The congregation has appreciated him being in the service and I have not had anyone complain to me about his behavior. I have people tell me they miss him when we've attended the other service.
Another awesome thing was our last haircut experience. Christopher had been getting a bit shaggy so it was time to deal with it. The girl that cut his hair has worked with him before and did very good. She suggested we try clippers and that was a lot easier. I think I like the scissor cut look for the top but its just hair. It grows back. He'll need another cut before fall. They gave him a sucker and he sat really well (Mammaw still holds him). We did have to do a little clean-up afterwards because he was finished before the stylist. But in the end he has a good little boy cut.
What are Little Boys Made of? Some versions say Snips and others say Frogs. How does that apply to my world? Christopher has developed an imagination. At times, it seems to be a little extreme. He has started to pretend to be a puppy. He barks and tries to give puppy kisses, but I think I put a stop to that one. My mom lives behind our house down a hill and keeps Christopher until I get home from work. I've been calling to say send the kids up and I wait for him half-way down the hill. Christopher has been crawling up the hill on his hands and feet. He will stand every few feet to regain himself and then its back to all fours. I'll admit it has been cute. He looks up with those big eyes and gives a little bark and on he goes. Perhaps something a little more disturbing has been he wants to eat like a puppy too. This may include licking his plate but it has also included eating off of the floor. So far I can say thank goodness he isn't eating or drinking out of the dog's bowls.
Christopher has continued to be an inspiration at church. He causes some disruption but I take him to class after we sing so he will not disrupt the sermon. My goal is not to get attention for him but for him to tolerate following my direction and what I want him to do for that short time period. When we are consistent, he has been able to maintain good behavior for the entire singing time. The congregation has appreciated him being in the service and I have not had anyone complain to me about his behavior. I have people tell me they miss him when we've attended the other service.
Another awesome thing was our last haircut experience. Christopher had been getting a bit shaggy so it was time to deal with it. The girl that cut his hair has worked with him before and did very good. She suggested we try clippers and that was a lot easier. I think I like the scissor cut look for the top but its just hair. It grows back. He'll need another cut before fall. They gave him a sucker and he sat really well (Mammaw still holds him). We did have to do a little clean-up afterwards because he was finished before the stylist. But in the end he has a good little boy cut.
Sunday, June 12, 2011
To everything there is a season....
To everything there is a season and a time to every purpose under heaven.
Things are changing in our house. The first major change is the reason I'm awake at 1 am to write this. I got a part time job that is supposed to be my fun money. The fun right now is working to get things caught up and cover a few extras. There are further employment changes coming. I've put in my notice to leave the safety and security of a job I've held for the past 5 years to begin a new program in the community. Its scary and exciting at the same time. I've become the "go-to" person at the office for anything and everything, which could be one of the precipitating factors for wanting to leave. When there is a question about anything, I seem to be the first person people run to. Even though people understand my decision to leave, I have caused several people (and more to come) sadness. It's hard to disappoint people, even when its "just a job". I've taken pride in my work and the reputation that I have in the community.
Things are starting to catch up with me. I'm near the point of exhaustion. I have 2 weeks of school to finish a bunch of work. To reduce that stress, I'm only taking one class next term instead of 2. I'm taking a break from my reading to do this entry. It's been a while since I wrote anything too. The full time job has had me busy and the part time job wears me out on the weekends. There is absolutely no time to clean my house or do laundry. I'm short tempered and irritable. I want to go lay in my bed and sleep for a week.
On a separate note, Christopher continues to do spectacularly. Both kids are off from school but Christopher goes back for the month July. He is trying to say more. We don't always understand what he's saying. He's also showing just how smart he is. If we can get him to "perform" I don't see any problem with him going to regular ed Kindergarten. He still has 2 years of pre-school to get ready for that obstacle. The clapping and yelling in church has become expected. He's doing better at staying for all of the singing and letting me hold him. He may be able to sit through a church service eventually.
Allison goes away for her first week of camp in another week. She's planning to be gone for two weeks. She leaves on Sunday and returns on Saturday for Girl Scout Camp. Church camp runs the following week. I'm thinking she's going to be too intolerable to do both weeks.
Things are changing in our house. The first major change is the reason I'm awake at 1 am to write this. I got a part time job that is supposed to be my fun money. The fun right now is working to get things caught up and cover a few extras. There are further employment changes coming. I've put in my notice to leave the safety and security of a job I've held for the past 5 years to begin a new program in the community. Its scary and exciting at the same time. I've become the "go-to" person at the office for anything and everything, which could be one of the precipitating factors for wanting to leave. When there is a question about anything, I seem to be the first person people run to. Even though people understand my decision to leave, I have caused several people (and more to come) sadness. It's hard to disappoint people, even when its "just a job". I've taken pride in my work and the reputation that I have in the community.
Things are starting to catch up with me. I'm near the point of exhaustion. I have 2 weeks of school to finish a bunch of work. To reduce that stress, I'm only taking one class next term instead of 2. I'm taking a break from my reading to do this entry. It's been a while since I wrote anything too. The full time job has had me busy and the part time job wears me out on the weekends. There is absolutely no time to clean my house or do laundry. I'm short tempered and irritable. I want to go lay in my bed and sleep for a week.
On a separate note, Christopher continues to do spectacularly. Both kids are off from school but Christopher goes back for the month July. He is trying to say more. We don't always understand what he's saying. He's also showing just how smart he is. If we can get him to "perform" I don't see any problem with him going to regular ed Kindergarten. He still has 2 years of pre-school to get ready for that obstacle. The clapping and yelling in church has become expected. He's doing better at staying for all of the singing and letting me hold him. He may be able to sit through a church service eventually.
Allison goes away for her first week of camp in another week. She's planning to be gone for two weeks. She leaves on Sunday and returns on Saturday for Girl Scout Camp. Church camp runs the following week. I'm thinking she's going to be too intolerable to do both weeks.
Wednesday, May 18, 2011
Grocery Shopping
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.
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.
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......
Friday, April 29, 2011
Let's Get NAKED!
Since my mom is out of town visiting the new grand-baby, I had to pick Christopher up from his after school sitter and bring him home. Within minutes he decided he didn't want to wear clothes. (I think his goal was a bath but he didn't mention that until I said it was not bath time). He has been on this kick taking off his socks and shoes. Well, today it started with the shirt. He managed to get the 2 buttons undone and pull the shirt off over his head. It wasn't smooth like someone who has been doing it a while but he did pretty good. (Mental note- let Christopher dress and undress himself). Next came the socks and shoes. He's gotten pretty good at that one. But no stopping there, down came the pants. At this point I tell him "no bath" in hopes that the diaper stays on. The diaper stays but he heads back the hallway saying bath so I use this as an opportune time to get him to go potty. He uses the potty and on goes a pull-up. (Whew- no meltdown about not getting a bath right now) Christopher spent the afternoon running around the house in a pull-up.
It's innocent today, and I'm hoping it doesn't cross environments and become a trend that turns into a problem. His IEP is next week so wouldn't it be great to have to address "Christopher has started stripping in class...."
It's innocent today, and I'm hoping it doesn't cross environments and become a trend that turns into a problem. His IEP is next week so wouldn't it be great to have to address "Christopher has started stripping in class...."
Thursday, April 28, 2011
He said what?
Communication is a huge hurdle to jump. When Christopher was 1 1/2 he had no words and did not babble. I always joked before he was born that he wouldn't talk because with his sister around, he'd never get a word in. He was diagnosed just before his second birthday and communication was non-existent. After the diagnosis, we finally started with PECS and Signing Time videos. PECS taught him to communicate but I think the bigger skill was learning that he had a way to get something he wanted. Christopher has never been a fussy child. He's always been very happy and would just go with the flow of things. PECS began that exchange process. He says something, he gets something and after a short time it began to click. He also learned a lot from the videos. I would have to watch the video and try to figure out what he was signing. The signs aren't always perfect but may be approximations. Over time, he has fluctuated between the frequency of each use. We probably use signs the most currently. He tries to say a lot of things.
Christopher has really taken to singing songs. I can't understand the words but he gets the melody enough to know what he is singing. I'm not sure what he is doing as far as speech development. I can't pin point sound or syllable replacement and I'm looking forward to the speech therapist's evaluation. He will just babble away at times. Sometimes I know he is trying to tell me something but it is just the same sounds over and over.
I have toyed with the idea of getting the IPOD Touch or another system and getting a communication program downloaded but I have hesitated because the speech has been coming slowly.
Christopher has really taken to singing songs. I can't understand the words but he gets the melody enough to know what he is singing. I'm not sure what he is doing as far as speech development. I can't pin point sound or syllable replacement and I'm looking forward to the speech therapist's evaluation. He will just babble away at times. Sometimes I know he is trying to tell me something but it is just the same sounds over and over.
I have toyed with the idea of getting the IPOD Touch or another system and getting a communication program downloaded but I have hesitated because the speech has been coming slowly.
Back on the Wagon
It has been back to real life this week. We survived the rest of the Easter Weekend and had to get back into the routine of things. Allison headed back to school on Monday and Christopher back on Tuesday. Where have the days gone when I could sleep until the kids started to move? I started a second job this week. It will normally be a every other weekend over night gig but this week and the next couple are about training. I had to be in Hagerstown by 7:45 on Monday morning! Oh My! I'm barely functional by then and had to plan for an hour drive. I left before the kids were up that morning. The rest of the week hasn't been as rough but I got into the habit of gettin up and getting ready.
On Sunday I realized our AC wasn't acting quite right and it was definately messed up by Monday. So we had a couple of nights without AC. It wasn't horrible but Christopher didn't sleep well and Allison complained the first night. We got it fixed yesterday with the push of a magic button and a warning from the AC guy to replace the filter MONTHLY! Unfortunately with the the extra heat, Christopher started coming in our room to sleep at night. I hoped and prayed he would sleep through the night last night since the AC was fixed and the house was comfortable but Oh No, at 4 am here comes the pitter patter. That's not so bad but he was awake and wiggly. He didn't go back to sleep right away like usual. He finally nodded off and I had to wake him this morning for school.
We have had a break-through with bath time. The last couple of baths I gave him, he has been able to follow the direction to put his head back. He still isn't the easiest but it is a whole lot easier. He's also hit this barefoot thing. Within minutes of walking in the door, he's got his shoes and socks off. It started on the van when he had to wait for his turn to get off when they got to the school. He's done it a couple of times when we were sitting in the car waiting. I'm not sure why. I have been thinking he's probably coming due for some new shoes.
Lots of different thoughts are rushing as I watch him play and interact but I'll save those for another time.
On Sunday I realized our AC wasn't acting quite right and it was definately messed up by Monday. So we had a couple of nights without AC. It wasn't horrible but Christopher didn't sleep well and Allison complained the first night. We got it fixed yesterday with the push of a magic button and a warning from the AC guy to replace the filter MONTHLY! Unfortunately with the the extra heat, Christopher started coming in our room to sleep at night. I hoped and prayed he would sleep through the night last night since the AC was fixed and the house was comfortable but Oh No, at 4 am here comes the pitter patter. That's not so bad but he was awake and wiggly. He didn't go back to sleep right away like usual. He finally nodded off and I had to wake him this morning for school.
We have had a break-through with bath time. The last couple of baths I gave him, he has been able to follow the direction to put his head back. He still isn't the easiest but it is a whole lot easier. He's also hit this barefoot thing. Within minutes of walking in the door, he's got his shoes and socks off. It started on the van when he had to wait for his turn to get off when they got to the school. He's done it a couple of times when we were sitting in the car waiting. I'm not sure why. I have been thinking he's probably coming due for some new shoes.
Lots of different thoughts are rushing as I watch him play and interact but I'll save those for another time.
Friday, April 22, 2011
Busy Busy Busy
I am exhausted! It has been a busy week and it still isn't over. Mom and I took the kids to the zoo on Thursday. Spring Break is officially the worst time to go to the zoo! The parking lots were full when we arrived so we ended up parking several blocks away and walked in. It wasn't so bad until it was time to leave and we had been walking for hours and had to go to the car which was parked 3-4 blocks uphill. The zoo is still pretty crappy. It seems like there are not a lot of animals on display and those that are were extremely crowded. A couple of the main areas are still closed for construction/improvements. We left D.C. just in time for rush hour but was lucky enough to stop partway down the road to hang out at the hospital for a couple of hours. The kids got to meet their new baby cousin. Christopher said "hi baby" to the baby a couple of times. We were pretty late getting home, but the kids slept most of the way and went right to bed (and most importantly, slept in).
We had to pick up my sister and her friends from a three day hike in Harper's Ferry. It started out decent, just a little cool. But when we took the bus from the parking area to the historical area it started to rain. We stopped in a couple of areas, met up with the hiking team and headed out. Poor Christopher was freezing from the drizzle and cold. We got home pretty early and I put both kids in their rooms to nap. Neither one went to sleep but Christopher played in his room, by himself for almost 2 hours!
My mom has a busy day of Easter activities planned for us for tomorrow. A local church is doing an egghunt and other activities in the morning and then we'll have an egghunt at the house. Sunday will be Easter lunch and another egghunt at an Aunt's house.
Kids return to school next week and we'll have to abide by a schedule again.
We had to pick up my sister and her friends from a three day hike in Harper's Ferry. It started out decent, just a little cool. But when we took the bus from the parking area to the historical area it started to rain. We stopped in a couple of areas, met up with the hiking team and headed out. Poor Christopher was freezing from the drizzle and cold. We got home pretty early and I put both kids in their rooms to nap. Neither one went to sleep but Christopher played in his room, by himself for almost 2 hours!
My mom has a busy day of Easter activities planned for us for tomorrow. A local church is doing an egghunt and other activities in the morning and then we'll have an egghunt at the house. Sunday will be Easter lunch and another egghunt at an Aunt's house.
Kids return to school next week and we'll have to abide by a schedule again.
Monday, April 18, 2011
Don't Worry, Be Happy
My church and work have been great assets to me in regards to dealing with Christopher's diagnosis. We also have a supportive network of family and friends but I'm not sure I would be as comfortable as I am without our outside networks. I do consider most of the people I work with as friends. When we have activities outside of work it is the work friends that I tend to invite. Church is also an asset because we do attend regularly and people genuinely want to know how Christopher is doing. (I had numerous posts of support on my facebook page regarding Christopher yelling out during church service this week). Everyone reminds me that he is only 3 and the behaviors that he exhibits is not really that much out of the ordinary.
We had a sermon a couple of weeks ago titled "Don't Worry Be Happy". Easier said than done. I worry all of the time about Christopher's future. I am trying to do better and take it one day at a time. Christopher is talking more and a lot of it is gibberish that I can't understand and I wonder if he will still be talking gibberish at 5 or 6 years old. What am I going to do when we're someplace and he is too big for me pick up and take where I want him to go? I have almost dropped this child more times than I could count because of how he uses his body to push away from me. I am still feeling the stress from yesterday's battle in my back and shoulders. What happens when he is too big to "man-handle"? I worry about his educational future. Will he still be in Special Education when he gets to Kindergarten? How many fights will I have with the school system about his education? Will he graduate with a regular diploma and go to college? Get married? Have kids? Will he be happy? Will he be a burden to Allison or other family?
Every time I hear about another child being diagnosed or being suspected of an Autism related disorder, my heart breaks for them. I try to be supportive and let them know the ins and outs of the diagnosis. I am happy to be a support to them and in helping them, I am helping myself. It is never a drainage on me and I want to know how everyone is doing. I do feel bad at times when my child is making more success than another child. It can be hard to brag on your child when you know the person you are talking to is in a rough patch. I hope that I am able to show how happy I am for someone else when they have made progress even if I am in a more negative spot.
My work has become increasingly difficult. I work with a lot of people with Autism and it is almost impossible to not bring myself into the work. It has helped build rapport because they know I understand but that is not what I am there for. I am going to school to become a teacher and even though the thought of teaching special ed has become more tempting I continuously remind myself (and my friends remind me too) that it would not be a good idea.
Overall, I'm trying to not worry and be happy. I'm trying to take each day in stride and concentrate on the successes.
We had a sermon a couple of weeks ago titled "Don't Worry Be Happy". Easier said than done. I worry all of the time about Christopher's future. I am trying to do better and take it one day at a time. Christopher is talking more and a lot of it is gibberish that I can't understand and I wonder if he will still be talking gibberish at 5 or 6 years old. What am I going to do when we're someplace and he is too big for me pick up and take where I want him to go? I have almost dropped this child more times than I could count because of how he uses his body to push away from me. I am still feeling the stress from yesterday's battle in my back and shoulders. What happens when he is too big to "man-handle"? I worry about his educational future. Will he still be in Special Education when he gets to Kindergarten? How many fights will I have with the school system about his education? Will he graduate with a regular diploma and go to college? Get married? Have kids? Will he be happy? Will he be a burden to Allison or other family?
Every time I hear about another child being diagnosed or being suspected of an Autism related disorder, my heart breaks for them. I try to be supportive and let them know the ins and outs of the diagnosis. I am happy to be a support to them and in helping them, I am helping myself. It is never a drainage on me and I want to know how everyone is doing. I do feel bad at times when my child is making more success than another child. It can be hard to brag on your child when you know the person you are talking to is in a rough patch. I hope that I am able to show how happy I am for someone else when they have made progress even if I am in a more negative spot.
My work has become increasingly difficult. I work with a lot of people with Autism and it is almost impossible to not bring myself into the work. It has helped build rapport because they know I understand but that is not what I am there for. I am going to school to become a teacher and even though the thought of teaching special ed has become more tempting I continuously remind myself (and my friends remind me too) that it would not be a good idea.
Overall, I'm trying to not worry and be happy. I'm trying to take each day in stride and concentrate on the successes.
Sunday, April 17, 2011
Hallelujah and Amen!
Today was a particularly trying day. We had transportation issues this morning so Danny opted to stay home and get some of the mowing done. Mom had class so she headed to church early and I brought up the tail with the two kids. We were a little late arriving so Christopher didn't get to run up the front to see Aunt Lisa and then go to class. Christopher decided he was not going to go to class this morning. After chasing him in the foyer for a little while we went into the sanctuary for music. The first song ended and Christopher let out a "yay" and clapped. Let me qualify this with saying our service is a contemporary service and some people will raise their hands but we don't typically have the out loud "hallelujahs and amens". I'm not saying this is good or bad, it's just how we are. So the song ends, there is silence and Christopher yells from the back, Yay!. The back part of the church turns to see who it is (and they are all smiling) and a few other people join in with the clapping! Soon there is a nice applause going. We make our way to some seats (next to his sitter), I'm hoping she will be a help to keep him calm, but oh-no, I'm fighting with him to stay still. The sitter did try to help me, but Christopher was just too wound up. At the end of every song, Christopher let out a "yay" and clapped. I took him back out after singing was over and managed to get him to stay in class, the teacher bribed him with a cupcake, so I coud get in for the rest of the service.
After taking Allison to her tumbling class and sitting on the mat to watch, I could barely move. I get home and I'm walking like an old lady (no offense to anyone). I go lay down for a while and later in pops Christopher, "hello mommy" and he treats me like a slide when I bend my legs. My back is feeling better but I can still feel it in my shoulders. So Hallelujah and Amen, I wrestled with a bear today and survived. I really hope he sleeps in some tomorrow.
I'm not sure what I'm going to do when I can't just pick him up and lug him where I need him to go.
After taking Allison to her tumbling class and sitting on the mat to watch, I could barely move. I get home and I'm walking like an old lady (no offense to anyone). I go lay down for a while and later in pops Christopher, "hello mommy" and he treats me like a slide when I bend my legs. My back is feeling better but I can still feel it in my shoulders. So Hallelujah and Amen, I wrestled with a bear today and survived. I really hope he sleeps in some tomorrow.
I'm not sure what I'm going to do when I can't just pick him up and lug him where I need him to go.
Saturday, April 16, 2011
Airplanes, Pointing and No!
There was a time when Christopher was oblivious to his surroundings. Early signs of Autism includes not pointing and not following a point. We had to physically put the object in Christopher's hands for him to notice it. We were outside yesterday and he looked up and said airplane. He is able to point at things and follow a point (mostly). There are even occasions he will bring us stuff he is interested in, such as looking at a book.
One of the cutest things he started doing has to do with "no". Sometimes I have to prompt him by asking a question and saying "yes or no" at the end of it. Other times, Christopher is quick to say "no" and if you don't pay attention to his answer, you may get the verbalization with a sign or even a trip to the PECS book where he has a "No" card. I wasn't sure how the "Yes" and "No" cards were going to work but he's made it work. There are other cards he still ignores but I keep them available for him.
One of the cutest things he started doing has to do with "no". Sometimes I have to prompt him by asking a question and saying "yes or no" at the end of it. Other times, Christopher is quick to say "no" and if you don't pay attention to his answer, you may get the verbalization with a sign or even a trip to the PECS book where he has a "No" card. I wasn't sure how the "Yes" and "No" cards were going to work but he's made it work. There are other cards he still ignores but I keep them available for him.
Tuesday, April 12, 2011
ROY G. BIV
Red, Orange, Yellow, Green, Blue, Purple....okay so its not Indigo, Violet, but this was Christopher's phrase this morning. I'm guessing it came from some cartoon but it would have to be something he recalled from at least the night before. We also got to see some rare pretend play this morning. Christopher found his doctor kit this morning and checked out my ears and heart. This may not be a big deal for most people but pretend play is something that we've been working on for a long time.
On the surface, Christopher looks like he is doing really well and he is. One of the biggest problems with working with Autism, is making sure there are no gaps in development. Kids learn things in a certain order to build upon skills and it can be difficult to make sure skills are met when you have a three year old working on 1 1/2 year old skills. Probably one of the most frustrating things and the hardest to keep from doing is comparing to other kids your child's age.
Christopher received an early diagnosis compared to other kids. When I think about the reasons for going for a diagnosis it wasn't to give Christopher a label, it was to give this "illness" a name. If you go to the doctor and find out you have a cold, the flu or cancer; you have given your illness a name and know how to battle it. In order to know how to fight the monster that was hindering Christopher's development we had to give it a name. Once we understood what we were fighting against, we were able to go after it head on. If you have cancer and treat it like the flu, the cancer is going to win in the end. Even if something happens and a doctor determines it isn't Autism but was Sensory Integration Disorder or some other disorder that doesn't have a name yet, there have been no interventions we have used that have caused harm. The interventions have only helped to open some doors to him.
In the end, it is the Roy G. Biv moments that keep me going strong and always wondering what the future has in store for us.
On the surface, Christopher looks like he is doing really well and he is. One of the biggest problems with working with Autism, is making sure there are no gaps in development. Kids learn things in a certain order to build upon skills and it can be difficult to make sure skills are met when you have a three year old working on 1 1/2 year old skills. Probably one of the most frustrating things and the hardest to keep from doing is comparing to other kids your child's age.
Christopher received an early diagnosis compared to other kids. When I think about the reasons for going for a diagnosis it wasn't to give Christopher a label, it was to give this "illness" a name. If you go to the doctor and find out you have a cold, the flu or cancer; you have given your illness a name and know how to battle it. In order to know how to fight the monster that was hindering Christopher's development we had to give it a name. Once we understood what we were fighting against, we were able to go after it head on. If you have cancer and treat it like the flu, the cancer is going to win in the end. Even if something happens and a doctor determines it isn't Autism but was Sensory Integration Disorder or some other disorder that doesn't have a name yet, there have been no interventions we have used that have caused harm. The interventions have only helped to open some doors to him.
In the end, it is the Roy G. Biv moments that keep me going strong and always wondering what the future has in store for us.
Monday, April 11, 2011
Collateral Damage
There can be a lot of collateral damage when there is a special needs child in the family. Often times, siblings are forced to grow up faster and put things aside because of their sibling. Resentment can grow between the children, between the parents and even between the parent and child. There can be so much added stress on the family that can result in the family separating.
Our goal has always been to give Allison her individual time and to pursue her activities. The last couple of days have been spent doing just that. She got some extra Mommy-Daughter time yesterday with tumbling class and then a trip to the mall to buy some shoes and get some ice cream. I took her to Girl Scouts tonight even though I didn't really feel like it. She had a blast. Danny or my mom keeps Christopher so she doesn't have to share this time with her brother. I try to keep her time for just her. When I have Christopher along, I have a lot more anxiety and usually want to get done and out of there.
When Christopher was receiving Birth to Three services it was difficult on Allison. I would send her down to my mom's, outside, or to her room to play because she wanted to be in the middle of everything. I tried to do things when she was at school or had other activities. I would explain that she went to school and this was like Christopher's school, but through her eyes, Christopher got to play with some neat toys and she wasn't allowed. Since he graduated and started pre-school that has been easier. She asks about his school and wants to visit but he only has school when she does too.
Allison has been a great helper and she might be growing up a little faster than she would have otherwise but she is fulfilling her role of big sister. I think that would have happened Autism or not. They are able to go outside and play and she will help keep an eye on Christopher. She can turn his cartoons on the television and play Nintendo DS with him. And like any big sister would, she gets aggrevated when he comes in her room and its not under her terms. And if anything gets lost or broken, Christopher did it.
Our goal has always been to give Allison her individual time and to pursue her activities. The last couple of days have been spent doing just that. She got some extra Mommy-Daughter time yesterday with tumbling class and then a trip to the mall to buy some shoes and get some ice cream. I took her to Girl Scouts tonight even though I didn't really feel like it. She had a blast. Danny or my mom keeps Christopher so she doesn't have to share this time with her brother. I try to keep her time for just her. When I have Christopher along, I have a lot more anxiety and usually want to get done and out of there.
When Christopher was receiving Birth to Three services it was difficult on Allison. I would send her down to my mom's, outside, or to her room to play because she wanted to be in the middle of everything. I tried to do things when she was at school or had other activities. I would explain that she went to school and this was like Christopher's school, but through her eyes, Christopher got to play with some neat toys and she wasn't allowed. Since he graduated and started pre-school that has been easier. She asks about his school and wants to visit but he only has school when she does too.
Allison has been a great helper and she might be growing up a little faster than she would have otherwise but she is fulfilling her role of big sister. I think that would have happened Autism or not. They are able to go outside and play and she will help keep an eye on Christopher. She can turn his cartoons on the television and play Nintendo DS with him. And like any big sister would, she gets aggrevated when he comes in her room and its not under her terms. And if anything gets lost or broken, Christopher did it.
Sunday, April 10, 2011
Baths and Haircuts
There are two things I hate dealing with when it comes to Christopher. Those are baths and haircuts. Baths have always been a source of trouble for us. Christopher had tubes put in his ears in August 2009 so I had to be extra careful when washing his hair and not just dump the water over his head. Still at 3+years old, Christopher doesn't understand holding his head back so I can get him rinsed. It takes extra long for me to give his bath. Danny does better with him so I try to con him into doing it whenever possible.
Baths also used to be a big behavior problem for us. Christopher thought he should have a bath every night and it should be when he wanted to have it. We had several meltdowns over not getting a bath that we had to work through. I remember once, I told him we were going to Mammaw's (within walking distance) to get him out of the house and past the meltdown. We have had other meltdown causes but I'm sure they will come up later. We don't have meltdowns anymore for that reason but baths continue to be a good motivator when I'm ready to come home.
The other time I hate is haircuts. This only comes to mind because he is past due for a trim. I always tell the stylist that a bad haircut is okay. He moves and cries and is very difficult. I usually get Mammaw to go along to hold him in the chair and then I hold his head still and hope no one gets cut in the process. It's the only time I wish he were a girl and then I could just let his hair grow long.
Another area a lot of parents have difficulty with is nail trimming, but we are fortunate in that area. Christopher will sit still and watch me trim his nails
PS- Christopher just won a battle with Danny over the TV. No more The Stand, Wonder Pets is on (at least until bedtime in another 40 minutes). Amazing what a sad crying face can do and a whole lot of spluttering that sounded a lot like "mean daddy"
Baths also used to be a big behavior problem for us. Christopher thought he should have a bath every night and it should be when he wanted to have it. We had several meltdowns over not getting a bath that we had to work through. I remember once, I told him we were going to Mammaw's (within walking distance) to get him out of the house and past the meltdown. We have had other meltdown causes but I'm sure they will come up later. We don't have meltdowns anymore for that reason but baths continue to be a good motivator when I'm ready to come home.
The other time I hate is haircuts. This only comes to mind because he is past due for a trim. I always tell the stylist that a bad haircut is okay. He moves and cries and is very difficult. I usually get Mammaw to go along to hold him in the chair and then I hold his head still and hope no one gets cut in the process. It's the only time I wish he were a girl and then I could just let his hair grow long.
Another area a lot of parents have difficulty with is nail trimming, but we are fortunate in that area. Christopher will sit still and watch me trim his nails
PS- Christopher just won a battle with Danny over the TV. No more The Stand, Wonder Pets is on (at least until bedtime in another 40 minutes). Amazing what a sad crying face can do and a whole lot of spluttering that sounded a lot like "mean daddy"
Saturday, April 9, 2011
Autism Walk 2011
We had our walk today in Cumberland, Maryland. The weather was manageable but cool and cloudy. Even on such a dreary day, everyone was in a good mood and their was a good crowd. The kids had a lot of fun and everyone loved our shirts. It was great having family and friends involved.
Its great to see groups of people pull together for one cause. We walk around a circular track and there isn't a time limit or a number of laps anyone has to do. I think it would be fun to have something more in town but understand that this does keep everyone safe. The location is enclosed somewhat so I just had to look for the bright orange shirt Allison was wearing and spot her on the other end of the area. (Our orange was a good color for that purpose) I saw other kids there and could see some of the symptoms and realized how fortunate we really are. Christopher is very mild and while we have our trials, there is always someone walking a path a little tougher. I'm sure those other parents feel the same way at times. It can be so easy to get lost in ourselves and think "poor poor me" and forget about the blessings.
Part of me is glad the walk is over. Fundraising can continue throughout the rest of the year but I put my focus in before the walk. I'll start thinking about plans for next year and begin to develop formal plans around November. My goal was to have all of our money posted before the walk this year and even with the early events that didn't happen. Through the 2 fundraising events and other donations we were just under $2000 (when everything posts). I think that is pretty awesome.
Its great to see groups of people pull together for one cause. We walk around a circular track and there isn't a time limit or a number of laps anyone has to do. I think it would be fun to have something more in town but understand that this does keep everyone safe. The location is enclosed somewhat so I just had to look for the bright orange shirt Allison was wearing and spot her on the other end of the area. (Our orange was a good color for that purpose) I saw other kids there and could see some of the symptoms and realized how fortunate we really are. Christopher is very mild and while we have our trials, there is always someone walking a path a little tougher. I'm sure those other parents feel the same way at times. It can be so easy to get lost in ourselves and think "poor poor me" and forget about the blessings.
Part of me is glad the walk is over. Fundraising can continue throughout the rest of the year but I put my focus in before the walk. I'll start thinking about plans for next year and begin to develop formal plans around November. My goal was to have all of our money posted before the walk this year and even with the early events that didn't happen. Through the 2 fundraising events and other donations we were just under $2000 (when everything posts). I think that is pretty awesome.
Friday, April 8, 2011
Take it for granted
Perhaps one of the most difficult things to come to terms with are the delays that Christopher exhibits when I see other kids his age or younger doing things he can't. His biggest barrier continues to be communication. We have come a very long way and the progress is what keeps us going. As a mom, my frustration comes from my three year old not being able to say "I'm hungry" or make other simple requests. We don't have screaming fits very often but when we do and we don't know why it can be frustrating, for us and him. It usually ends in some tears and questioning but then I pick myself up and get ready for another day.
Another thing parents take for granted that are small blessings for us include hugs and kisses. Every so often we can ask for a hug and get one. Sometimes a hug comes in the form of some needed sensory input. (Christopher loves squeezes) But we get a hug in the end.
We can also have difficulty with changes in routine but does well overall. Christopher has his own agenda and when we disagree there may be a fit involved. We are blessed in that his fits are typically short lived and Christopher is an overall happy child. It also goes the opposite direction, when we say its time for bed (at night, not so much for naps) Christopher goes right to his bed lays down and goes to sleep (typically). I have a picture calendar on the fridge that we use to show him where he is going that day. He is cute when he looks at it, says no, and tries to change the picture. He wants to go to Mee-Maw's and not to school. It took a while to figure out why he wanted to go to church all of the time until I realized that the siding on the church kinda looked like mom's trailer. I have new pictures to print but haven't gotten to that yet.
We have had problems in the past when I've had to leave someplace because of behaviors. Halloween was difficult last year when I took both kids on my own to the mall and it was super crowded. The long, slow moving line wasn't a help but when other kids were holding Thomas Trains or we neared the end of the mall where a little train ride was located it was dreadful. I was able to let a few people move ahead of us to get some distance between us and Thomas-boy but when we neared the riding toy, it was time to go. Unfortunately, Allison was on the losing end that night. We were all tired but if not for Christopher's behavior we would have stayed longer. She got plenty of candy but it was the need to get out of the mall RIGHT NOW that was negative for her.
I do tend to avoid doing things with both kids on my own. Usually I can talk mom into going along if it isn't something Danny would be interested in. We're debating a trip to the zoo over spring break. There is no way I'm taking that adventure on my own.
Another thing parents take for granted that are small blessings for us include hugs and kisses. Every so often we can ask for a hug and get one. Sometimes a hug comes in the form of some needed sensory input. (Christopher loves squeezes) But we get a hug in the end.
We can also have difficulty with changes in routine but does well overall. Christopher has his own agenda and when we disagree there may be a fit involved. We are blessed in that his fits are typically short lived and Christopher is an overall happy child. It also goes the opposite direction, when we say its time for bed (at night, not so much for naps) Christopher goes right to his bed lays down and goes to sleep (typically). I have a picture calendar on the fridge that we use to show him where he is going that day. He is cute when he looks at it, says no, and tries to change the picture. He wants to go to Mee-Maw's and not to school. It took a while to figure out why he wanted to go to church all of the time until I realized that the siding on the church kinda looked like mom's trailer. I have new pictures to print but haven't gotten to that yet.
We have had problems in the past when I've had to leave someplace because of behaviors. Halloween was difficult last year when I took both kids on my own to the mall and it was super crowded. The long, slow moving line wasn't a help but when other kids were holding Thomas Trains or we neared the end of the mall where a little train ride was located it was dreadful. I was able to let a few people move ahead of us to get some distance between us and Thomas-boy but when we neared the riding toy, it was time to go. Unfortunately, Allison was on the losing end that night. We were all tired but if not for Christopher's behavior we would have stayed longer. She got plenty of candy but it was the need to get out of the mall RIGHT NOW that was negative for her.
I do tend to avoid doing things with both kids on my own. Usually I can talk mom into going along if it isn't something Danny would be interested in. We're debating a trip to the zoo over spring break. There is no way I'm taking that adventure on my own.
Welcome
This blog will serve as an outlet for me to voice my frustrations and joy in a constructive manner. I love my children and I do become frustrated at times, like any mother does. Sometimes, being the parent of a child with special needs can result in a lot being held within oneself. There may be rants on occasion if it has been a particular rough day and this will also be helpful in remembering how far we have come in a short time.
Christopher was born in January 2008. He is our second child and his sister is four years older. We experienced ths normal baby stuff. Wondering why we were starting all over when we just got Allison to be pretty self-sufficient. After his first birthday, Christopher was not talking and because his sister talks so much we didn't really notice the babbling never took hold either. Around April of 2009, I really began to question his development. I am a social worker and have oodles of experience with developmental delays so I knew where to go for help. That's when WV Birth to Three came into our lives. We had a terrific team working with Christopher. (Except for the OT that I fired after a month of blah service) By December 2009, Christopher's teachers were thinking Autism so we made the 2 hour trek to University of Virginia Hospital to see a developmental pediatrician. The doctor confirmed the teachers suspicions (and ours that we had on and off since April) and gave a diagnosis of Mild-Moderate Autism.
Since the diagnosis, we have had people swear he isn't Autistic (one of the reasons the OT was fired). We had complaints about "labeling" him. And we had a lot of support from friends, family and church. I am reminded constantly that God does not give us more than we can handle and that there is a reason I was blessed with Christopher. He has made tremendous progress in the past year. Christopher began to communicate with PECS and sign language. Signing Time is excellent!!! The PECS taught Christopher about the exchange in communication. He is saying some words and phrases now. We often cannot understand what he is saying but he is talking. Christopher loves to sing and we can usually pick out from the melody what he is singing.
Christopher started pre-school after his third birthday (we lost his Birth to Three teachers then too). An amazing thing happened, he went from no idea about toileting to having an interest after the first day of school. (We ended up having several snow days, so I got to work with him on it). It has its trials still but if we manage to take him every couple of hours he will stay dry all day long!
Well, that's the highlights. I glossed over a lot but will probably point stuff out as I go along.
Christopher was born in January 2008. He is our second child and his sister is four years older. We experienced ths normal baby stuff. Wondering why we were starting all over when we just got Allison to be pretty self-sufficient. After his first birthday, Christopher was not talking and because his sister talks so much we didn't really notice the babbling never took hold either. Around April of 2009, I really began to question his development. I am a social worker and have oodles of experience with developmental delays so I knew where to go for help. That's when WV Birth to Three came into our lives. We had a terrific team working with Christopher. (Except for the OT that I fired after a month of blah service) By December 2009, Christopher's teachers were thinking Autism so we made the 2 hour trek to University of Virginia Hospital to see a developmental pediatrician. The doctor confirmed the teachers suspicions (and ours that we had on and off since April) and gave a diagnosis of Mild-Moderate Autism.
Since the diagnosis, we have had people swear he isn't Autistic (one of the reasons the OT was fired). We had complaints about "labeling" him. And we had a lot of support from friends, family and church. I am reminded constantly that God does not give us more than we can handle and that there is a reason I was blessed with Christopher. He has made tremendous progress in the past year. Christopher began to communicate with PECS and sign language. Signing Time is excellent!!! The PECS taught Christopher about the exchange in communication. He is saying some words and phrases now. We often cannot understand what he is saying but he is talking. Christopher loves to sing and we can usually pick out from the melody what he is singing.
Christopher started pre-school after his third birthday (we lost his Birth to Three teachers then too). An amazing thing happened, he went from no idea about toileting to having an interest after the first day of school. (We ended up having several snow days, so I got to work with him on it). It has its trials still but if we manage to take him every couple of hours he will stay dry all day long!
Well, that's the highlights. I glossed over a lot but will probably point stuff out as I go along.
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