Below is a link to a YouTube video that Mike's cousin sent me (Thanks, Nicole!). It's such a simple video with a wonderful message. A similar story to Brycen's about the initially meeting milestones, and then stopping and regressing. All of those things on the cards are true...so much is a battle between therapies, funding, research, school, and so on. It is my life to fill out that paperwork, to make those phone calls, to shuttle him to and from therapies, to file the neverending paperwork just to keep his services afloat. The books I read, the college classes I took, and even the years of work experience I had never fully prepared me for what it is like to parent a child at Brycen's developmental level 24 hours a day, 7 days a week, 52 weeks per year...for the rest of my or his life.
"Autism" may have silenced my little boy's verbal communication, but I can guarantee it is not going to silence our fight! Brycen will be the best Brycen he can be!
http://www.youtube.com/watch?v=z2B1FeS5VX4&sns=fb
Showing posts with label Links to other sites. Show all posts
Showing posts with label Links to other sites. Show all posts
Friday, August 19, 2011
Thursday, April 28, 2011
Brycen made it into Autism Speaks Top Photos for Light It Up Blue!
Here is the link to see Brycen's picture that was rated the top second picture out of thousands that were submitted to Autism Speaks in honor of Light It Up Blue for Autism Awareness in April! It's so great to see his face out there representing how Autism can affect anybody...there isn't a specific look to Autism as you can see. It is out there everywhere you go! I want to give credit to my brother-in-law, John, who took many pictures that day to honor Brycen and his fight, as well as all who came out to support that day to walk. I know I've said this before, but I can't say it enough...Thank you, John, for capturing the beauty of my little boy!
http://gallery.autismspeaks.org/gallery/892?utm_source=social-media&utm_medium=Facebook&utm_campaign=Gallery
In addition to that, we are well on our way to meeting our goal of $3000 for Team Brycen. I have attached another link that takes you directly to the team page on the Iowa Walk Now for Autism Speaks website. We have many walkers signed up and many, many people who have donated from immediate family all the way to people that we have never even met! Thank you for all of your support...and it would be great if we could see that number go ABOVE our goal again this year:)
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0
http://gallery.autismspeaks.org/gallery/892?utm_source=social-media&utm_medium=Facebook&utm_campaign=Gallery
In addition to that, we are well on our way to meeting our goal of $3000 for Team Brycen. I have attached another link that takes you directly to the team page on the Iowa Walk Now for Autism Speaks website. We have many walkers signed up and many, many people who have donated from immediate family all the way to people that we have never even met! Thank you for all of your support...and it would be great if we could see that number go ABOVE our goal again this year:)
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0
Saturday, April 16, 2011
"Autism Now" Series on PBS starting April 18
PBS is going to be airing a 6 part series on Autism beginning Monday, April 18 during their PBS NewsHour. This airs at 5:30pm in our area, but they are also offering each part online at least one day before the TV program. The series shows how Autism affects the entire family, prevalence, causes, treatments, adults with Autism, and finally Autism & public policy. The link below will take you directly to the PBS website that discusses the series.
http://www.pbs.org/newshour/rundown/2011/04/viewers-guide-autism-today.html
If you can, please take the time to either watch this online or on TV. I am going to attempt to stay up to date on it next week and blog about my thoughts on the series and how it relates to Brycen.
http://www.pbs.org/newshour/rundown/2011/04/viewers-guide-autism-today.html
If you can, please take the time to either watch this online or on TV. I am going to attempt to stay up to date on it next week and blog about my thoughts on the series and how it relates to Brycen.
~Genetics Update~
I received a phone call from the University of Iowa Hospitals- Genetics Clinic this week. As you know, we took Brycen in February to have his blood taken and tested to determine if the Autism can be linked to genetics. There are always good and bad things to doing more testing...the good thing with genetics is that if it comes back positive in one area, we have our answer as to where his Autism came from...the bad thing is that only 95% or so cases of Autism can be linked to genetics AND if is is positive, that means that one of us gave him the gene (or combo of both of us) so guilt may follow the outcome.
Deciding to go ahead with genetics testing was not on our priority list when he was diagnosed. I believe we needed to work through the grief of having a child diagnosed with a life-long disorder and to start on the task of getting him as much help as possible to help with the symptoms and hopefully begin to see improvement. We decided that it was time to pursue genetics last summer (2010) so about a year after his official diagnosis and almost 2 years after he started regressing. We called U of I to schedule an appointment and was put on a waiting list for all the outreach clinics in NW and Central Iowa. When we were moved back to the Eastern side of the state (closer to U of I) in the fall for Mike's job, I called to updated our address and phone number and asked about getting us on the waiting list for this area. It just so happened that they had started scheduling out February appointments so I booked us for the first one available that month in the Cedar Rapids clinic to save us a little drive time/gas.
Genetics testing consisted of a physical exam, measuring certain body parts, noting markings on the skin from an ultraviolet light, as well as many questions about pregnancy, birth, and anything & everything in his life up to this point. Of course it also involved taking a couple vials of blood from him also.
The first thing they were testing Brycen for was Fragile X Syndrome which falls on the Autism Spectrum, but is in it's own category because it is linked to the mother's chromosomes. People with Fragile X have some very distinct facial features and Brycen does have a couple of them so it was a logical test to have done. His test came back negative, therefore if I am a carrier for this syndrome, it's not too prevalent in my genes.
The second test they run with the blood is Chromosomal Microarray Analysis. Attached is a link that describes this: http://www.sciencedaily.com/releases/2007/03/070329092046.htm This takes a very close look at all the chromosomes and notes even the smallest of issues. This test did find something in Brycen's chromosomes...an actual duplication of a part of the 16q. Science is not my best subject so I'm not going to try to explain much of what the lady told me on the phone. At this point, they checked the database for any link of this chromosome to a disability and found none noted (yet!). The next step in testing is for Mike and I to have our blood taken and tested to see if one of us also have this duplication. If one of us does, then the duplication is probably nothing and not related to his Autism or we would also have it. If we don't have the duplication, then we will go to the next step which might include further testing of Brycen and entering the information into the database to see if any more people show up with the same duplication. One thing I did want to tell you is that the lady from the clinic did tell me that this area of the chromosome is linked to memory, language, and learning which ironically is where Brycen has so many Autism symptoms.
I will definitely keep you updated on the findings after we are tested and get results! It really could be nothing, or it could be the start of something big in determining why Brycen has all of this. The other thing I wanted to note is that if you, family member, or friend has a child that has been diagnosed with an ASD or other developmental delay, I highly recommend you take the time for genetics testing. Even if this was done more than a few years ago, this chromosome testing is new and very good at finding the smallest of issues whereas the old testing was very basic so having it done again with the new testing could provide you answers as well. If this duplication is something to enter in the database, not much can be done research and testing wise on Brycen until others are tested and come forward with the same area of duplication.
Deciding to go ahead with genetics testing was not on our priority list when he was diagnosed. I believe we needed to work through the grief of having a child diagnosed with a life-long disorder and to start on the task of getting him as much help as possible to help with the symptoms and hopefully begin to see improvement. We decided that it was time to pursue genetics last summer (2010) so about a year after his official diagnosis and almost 2 years after he started regressing. We called U of I to schedule an appointment and was put on a waiting list for all the outreach clinics in NW and Central Iowa. When we were moved back to the Eastern side of the state (closer to U of I) in the fall for Mike's job, I called to updated our address and phone number and asked about getting us on the waiting list for this area. It just so happened that they had started scheduling out February appointments so I booked us for the first one available that month in the Cedar Rapids clinic to save us a little drive time/gas.
Genetics testing consisted of a physical exam, measuring certain body parts, noting markings on the skin from an ultraviolet light, as well as many questions about pregnancy, birth, and anything & everything in his life up to this point. Of course it also involved taking a couple vials of blood from him also.
The first thing they were testing Brycen for was Fragile X Syndrome which falls on the Autism Spectrum, but is in it's own category because it is linked to the mother's chromosomes. People with Fragile X have some very distinct facial features and Brycen does have a couple of them so it was a logical test to have done. His test came back negative, therefore if I am a carrier for this syndrome, it's not too prevalent in my genes.
The second test they run with the blood is Chromosomal Microarray Analysis. Attached is a link that describes this: http://www.sciencedaily.com/releases/2007/03/070329092046.htm This takes a very close look at all the chromosomes and notes even the smallest of issues. This test did find something in Brycen's chromosomes...an actual duplication of a part of the 16q. Science is not my best subject so I'm not going to try to explain much of what the lady told me on the phone. At this point, they checked the database for any link of this chromosome to a disability and found none noted (yet!). The next step in testing is for Mike and I to have our blood taken and tested to see if one of us also have this duplication. If one of us does, then the duplication is probably nothing and not related to his Autism or we would also have it. If we don't have the duplication, then we will go to the next step which might include further testing of Brycen and entering the information into the database to see if any more people show up with the same duplication. One thing I did want to tell you is that the lady from the clinic did tell me that this area of the chromosome is linked to memory, language, and learning which ironically is where Brycen has so many Autism symptoms.
I will definitely keep you updated on the findings after we are tested and get results! It really could be nothing, or it could be the start of something big in determining why Brycen has all of this. The other thing I wanted to note is that if you, family member, or friend has a child that has been diagnosed with an ASD or other developmental delay, I highly recommend you take the time for genetics testing. Even if this was done more than a few years ago, this chromosome testing is new and very good at finding the smallest of issues whereas the old testing was very basic so having it done again with the new testing could provide you answers as well. If this duplication is something to enter in the database, not much can be done research and testing wise on Brycen until others are tested and come forward with the same area of duplication.
Wednesday, December 29, 2010
Which one is right for Brycen???
I thought some decisions in the past were hard, but I think this is by far the most difficult decision we have ever had to make. While some people (including myself until recently) think all of this would probably be easy because all we want is for our son to be able to communicate with us, I am finding out it is so much more difficult than any other decision we have ever had to make for him!! Choosing to get him evaluated by an Autism team was easy, choosing to start speech and OT was easy, starting PECS was easy...ok, so none of this is really "easy" because it all comes with a lot of emotions, grieving, acceptance, educating, adjusting, etc. But all of these were just a given when it came to Brycen's diagnosis and since we live in small towns, we don't have options of various therapies so you take what you have available...and lucky for us that we have loved both of the places he has received his speech and OT.
Now we are making a decision that could either "make or break" his communication skills. The decision to start medications has been hard, but with medications, we can do more trial and error over time. With this device, the decision we make now has to be the right one for at least 5 years. It's almost like investing in a car or house...will it fit our needs, does it have enough room to grow with us, will it be durable and reliable...so many things to consider also with a device. We have to take into account things about Brycen that we aren't even sure about because he can't tell us! We commit ourselves to something that we think meets his needs and he can use, but what if we find out in a year that the other device's options seem to meet his needs better at that time?! We can't just trade it in and get a new one like you can a car or even a house!
We already made the decision several weeks go that we needed to go with a higher-tech device because of the "5 year rule" and we knew we wanted to meet with two different companies to view at least 2 different machines to make comparisons. Those were the easy decisions:)
I am getting so emotional and so stressed out over this decision...I keep crying when I think about the possibility of it not meeting his needs or of him getting frustrated with it to the point of causing him to regress. I don't even know who I can share these feelings with because I don't know how many people really and truly understand how much this is affecting me. Even the two reps we have talked to don't have "personal" experience with choosing one. Our speech therapist has been wonderful to be at both of these appointments, to do her research, to ask amazing questions that I would never have thought of by using her experience with other people/kids and devices. I'm crying just typing out this post because of how worried I am. Choosing something like this should make me feel excited and make me feel like I am opening up doors for Brycen that he doesn't have right now...so why do I feel like a failure as his mom when I am upset about it??
I do want to explain that both of these machines have wonderful capabilities to grow with Brycen! They each have pros and cons, they each are very visual for him, they each can be adapted somewhat to meet his needs and have some special features that we know would benefit him. The problem is that each person that needs a device is so unique and these companies do what they can to mesh that into one machine that could work for the majority of people. If I could take a few features of the first one and add that to a few features of the second one, then this decision wouldn't be so hard because I KNOW those are the features that would benefit Brycen now. But that's another problem I am having...what may benefit him now may not be the things that will work for him in a year or two! I have to take into account so many aspects of his life, the different situations he will use the device in, how easy is it for others like his teachers and my mom to use with him, will I get frustrated programming it (because if he sees me frustrated, then of course he will become frustrated), the fact he "sees" things in vertical not horizontal...so much to consider and of course there are those unanswered questions we have about what his next 5 years will be like and how much he will progress, so how much can grow with him! When I talked to Mike after the appt today, he immediately asked how did Brycen react to the machine today and that should help make the decision. I wish it was that easy...but unfortunately, Brycen was having an "off" day today. We noticed before even showing him the device that he was mellow, not verbalizing any sounds, didn't even run down the hallway like he always does when we head to the therapy room. The other time, he was happy, verbalizing a lot of sounds, using his few signs more, etc. On that day, he took over the machine and used it like he knew exactly what to do. Today, all he wanted to do was rub the smooth surface, push a few buttons, and then ignore it. I can't even let that help me make the decision since it was obvious his mood and abilities were completely different each day.
Just reading over this is making me cry again so I think it's time to finish this up. Below you will find links to both devices...unfortunately the links don't give you a real picture of how it can be used and what we will have programmed for Brycen, but at least you can see what I am contemplating. Thanks for "reading" me out! Again, I know this seems like it shouldn't take over so much of my emotions and thoughts right now, but this is a very, very difficult decision that pretty much affects Brycen's life for years and his ability to communicate. I just wish some there was some magical "sign" to tell me what is right for Brycen!
http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
http://www.dynavoxtech.com/products/maestro/features.aspx
Now we are making a decision that could either "make or break" his communication skills. The decision to start medications has been hard, but with medications, we can do more trial and error over time. With this device, the decision we make now has to be the right one for at least 5 years. It's almost like investing in a car or house...will it fit our needs, does it have enough room to grow with us, will it be durable and reliable...so many things to consider also with a device. We have to take into account things about Brycen that we aren't even sure about because he can't tell us! We commit ourselves to something that we think meets his needs and he can use, but what if we find out in a year that the other device's options seem to meet his needs better at that time?! We can't just trade it in and get a new one like you can a car or even a house!
We already made the decision several weeks go that we needed to go with a higher-tech device because of the "5 year rule" and we knew we wanted to meet with two different companies to view at least 2 different machines to make comparisons. Those were the easy decisions:)
I am getting so emotional and so stressed out over this decision...I keep crying when I think about the possibility of it not meeting his needs or of him getting frustrated with it to the point of causing him to regress. I don't even know who I can share these feelings with because I don't know how many people really and truly understand how much this is affecting me. Even the two reps we have talked to don't have "personal" experience with choosing one. Our speech therapist has been wonderful to be at both of these appointments, to do her research, to ask amazing questions that I would never have thought of by using her experience with other people/kids and devices. I'm crying just typing out this post because of how worried I am. Choosing something like this should make me feel excited and make me feel like I am opening up doors for Brycen that he doesn't have right now...so why do I feel like a failure as his mom when I am upset about it??
I do want to explain that both of these machines have wonderful capabilities to grow with Brycen! They each have pros and cons, they each are very visual for him, they each can be adapted somewhat to meet his needs and have some special features that we know would benefit him. The problem is that each person that needs a device is so unique and these companies do what they can to mesh that into one machine that could work for the majority of people. If I could take a few features of the first one and add that to a few features of the second one, then this decision wouldn't be so hard because I KNOW those are the features that would benefit Brycen now. But that's another problem I am having...what may benefit him now may not be the things that will work for him in a year or two! I have to take into account so many aspects of his life, the different situations he will use the device in, how easy is it for others like his teachers and my mom to use with him, will I get frustrated programming it (because if he sees me frustrated, then of course he will become frustrated), the fact he "sees" things in vertical not horizontal...so much to consider and of course there are those unanswered questions we have about what his next 5 years will be like and how much he will progress, so how much can grow with him! When I talked to Mike after the appt today, he immediately asked how did Brycen react to the machine today and that should help make the decision. I wish it was that easy...but unfortunately, Brycen was having an "off" day today. We noticed before even showing him the device that he was mellow, not verbalizing any sounds, didn't even run down the hallway like he always does when we head to the therapy room. The other time, he was happy, verbalizing a lot of sounds, using his few signs more, etc. On that day, he took over the machine and used it like he knew exactly what to do. Today, all he wanted to do was rub the smooth surface, push a few buttons, and then ignore it. I can't even let that help me make the decision since it was obvious his mood and abilities were completely different each day.
Just reading over this is making me cry again so I think it's time to finish this up. Below you will find links to both devices...unfortunately the links don't give you a real picture of how it can be used and what we will have programmed for Brycen, but at least you can see what I am contemplating. Thanks for "reading" me out! Again, I know this seems like it shouldn't take over so much of my emotions and thoughts right now, but this is a very, very difficult decision that pretty much affects Brycen's life for years and his ability to communicate. I just wish some there was some magical "sign" to tell me what is right for Brycen!
http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
http://www.dynavoxtech.com/products/maestro/features.aspx
Thursday, December 16, 2010
Choosing an AAC Device for Brycen
We've had to change our plan with a device for Brycen since I last blogged about it due to the financial aspect of it. With Brycen's services, there is a hierarchy of who will pay for what and in what order. It is billed through our private insurance first, then put through to Medicaid, and then if Medicaid is at it's limit of paying for something, our Waiver services can help out if we have the money available in Brycen's name. It's very confusing so I'm not really going to do into detail on the specifics, but the summary of all of it is the device that we think is best for him right now will hopefully be too low-tech for him in a couple years and Medicaid puts limits on how often they will help pay for a device. We are still unsure if and how much our private ins. will pay because of the run-around I have gotten from them in the 3 calls I have made to them. So, despite my reservations about getting a higher-tech device for Brycen right now as I know how easily frustrated he is, as well as the short attention span he has, we really have no choice at this point. These devices can easily be thousands of dollars...so obviously far out of our personal financial reach so we have to rely on insurance to do what they can and just adapt to what they will pay for and how often.
Therefore, we are no longer getting the Go-Talk 9 that he is currently using in therapy sessions now and has responded so positively to. We had a meeting yesterday with a rep from Talk To Me Technologies and will have another meeting on Monday with a rep from the Dynavox company. They each carry different devices that are very similar, but we want to make sure we are considering all of our options since this obviously is not a simple decision. While I am absolutely ecstatic about taking this next step in helping Brycen with his communication skills, it is also frightening and stressful as I worry about making the wrong decision and I worry also about building too much hope into the device. Don't get me wrong...I know the research supports how much these devices can help in so many areas of the child's life, but being that there is no one right device or one right answer on how to help kids with ASD, I feel like I am reaching for something with a very fragile mindset.
Anyway, I wanted to share a link to the actual device we introduced Brycen to at the meeting yesterday.
http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
I loved it! My experience with devices has been with the basic low tech Go-Talks as well as the older style, big computer like devices over the years. It is amazing what they have recently came out with that you can really tailor to the child's specific needs and day-to-day things. The devices we are currently looking for need to last him at least 5 years, so we want it to be able to grow with him from pictures, to words, and be something he can use to do homework with. So if he is still having issues with verbal skills in a few years, we can sit at the table with him with the device, ask him a homework question, and he can spell out his answer!
Now, I'm sure you are all waiting for me to tell you how Brycen responded to it...and I'm sure the suspense is killing you because it really killed me for the last couple weeks since we set this appt up! It was so unbelieveable that I had to call Mike at work right after the appt, which I NEVER do! I usually just wait to fill him in on updates from Brycen's appts and school stuff when he comes home, but this was far too amazing to not share right away.
Brycen LOVED it! He actually came over and just grabbed it out of her hand when she was showing me things. He set it down on the table, and pushed a couple buttons to see what it would say. This is the same reaction to the Go-Talk that he had...like he needed to just feel it out first and see what it does by pushing all of the buttons. What I think really surprised him is when he would push a category button, a bunch more pictures magically appeared and he looked up with a smile like "this is pretty cool." Without any prompts or pointing to show him, he pushed on the "toys" button on his own, found a picture of a "ball" on the next screen, pushed it and heard "I want to play ball." He then smiled and went over to the ball to play with the SLP. He came back over a little while later while we were talking, grabbed the device again, found the toy button on his own again, and then pushed the "swing" button and the device said "I want to swing." So then he went over to the swing and did that for a little bit! Not only did he seem to be curious about the device, he figured out those steps without us even showing him just by looking at the pictures and trying it out! He also followed through with the choice he made which is something we have been working on with him.
Now the big news is we decided to try out the "I'm hungry" button and we programmed in two different snacks we had available for him to choose from. He did the same thing as before just by us pointing to the "i'm hungry" button first. After a few minutes of snack, he went back to the mainscreen on his own, found the toys again and communicated through the buttons that he wanted to swing again. Then after swinging, he came back, found the "I'm hungry" on his own and went to the snacks again.
I know this probably doesn't give you the best picture of how it all played out...but take it from me, that I was absolutely amazed at how interested he was in the machine and how he pretty much taught himself those two things! I, of course, had tears in my eyes! If we can accomplish all of that in one hour, imagine what the possibilities are once he has a machine to use every single day!
Therefore, we are no longer getting the Go-Talk 9 that he is currently using in therapy sessions now and has responded so positively to. We had a meeting yesterday with a rep from Talk To Me Technologies and will have another meeting on Monday with a rep from the Dynavox company. They each carry different devices that are very similar, but we want to make sure we are considering all of our options since this obviously is not a simple decision. While I am absolutely ecstatic about taking this next step in helping Brycen with his communication skills, it is also frightening and stressful as I worry about making the wrong decision and I worry also about building too much hope into the device. Don't get me wrong...I know the research supports how much these devices can help in so many areas of the child's life, but being that there is no one right device or one right answer on how to help kids with ASD, I feel like I am reaching for something with a very fragile mindset.
Anyway, I wanted to share a link to the actual device we introduced Brycen to at the meeting yesterday.
http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
I loved it! My experience with devices has been with the basic low tech Go-Talks as well as the older style, big computer like devices over the years. It is amazing what they have recently came out with that you can really tailor to the child's specific needs and day-to-day things. The devices we are currently looking for need to last him at least 5 years, so we want it to be able to grow with him from pictures, to words, and be something he can use to do homework with. So if he is still having issues with verbal skills in a few years, we can sit at the table with him with the device, ask him a homework question, and he can spell out his answer!
Now, I'm sure you are all waiting for me to tell you how Brycen responded to it...and I'm sure the suspense is killing you because it really killed me for the last couple weeks since we set this appt up! It was so unbelieveable that I had to call Mike at work right after the appt, which I NEVER do! I usually just wait to fill him in on updates from Brycen's appts and school stuff when he comes home, but this was far too amazing to not share right away.
Brycen LOVED it! He actually came over and just grabbed it out of her hand when she was showing me things. He set it down on the table, and pushed a couple buttons to see what it would say. This is the same reaction to the Go-Talk that he had...like he needed to just feel it out first and see what it does by pushing all of the buttons. What I think really surprised him is when he would push a category button, a bunch more pictures magically appeared and he looked up with a smile like "this is pretty cool." Without any prompts or pointing to show him, he pushed on the "toys" button on his own, found a picture of a "ball" on the next screen, pushed it and heard "I want to play ball." He then smiled and went over to the ball to play with the SLP. He came back over a little while later while we were talking, grabbed the device again, found the toy button on his own again, and then pushed the "swing" button and the device said "I want to swing." So then he went over to the swing and did that for a little bit! Not only did he seem to be curious about the device, he figured out those steps without us even showing him just by looking at the pictures and trying it out! He also followed through with the choice he made which is something we have been working on with him.
Now the big news is we decided to try out the "I'm hungry" button and we programmed in two different snacks we had available for him to choose from. He did the same thing as before just by us pointing to the "i'm hungry" button first. After a few minutes of snack, he went back to the mainscreen on his own, found the toys again and communicated through the buttons that he wanted to swing again. Then after swinging, he came back, found the "I'm hungry" on his own and went to the snacks again.
I know this probably doesn't give you the best picture of how it all played out...but take it from me, that I was absolutely amazed at how interested he was in the machine and how he pretty much taught himself those two things! I, of course, had tears in my eyes! If we can accomplish all of that in one hour, imagine what the possibilities are once he has a machine to use every single day!
Wednesday, November 24, 2010
Working Through the Anxiety of the Holiday Season
The holidays are upon us...which means family get togethers, crowded shopping places, freezing weather, breaks from school, and so many other things.
While so many families look forward to this time, I don't exactly dread it, but I do have so much more to consider now. While pregnant with Brycen, I yearned to be able to show him off to extended family which is what we did those first couple years (of course when possible around our work schedules and moving a few hours away). I was proud of my adorable little boy...and of course I am still proud, but I know that "showing" him off is different now.
We have so much to consider with him over these couple months. He gets very overwhelmed with too many people, therefore we will probably never be able to go to my extended family get togethers again and I have to be careful about what stores and when I take him there because of the crowds and time to wait in line that occurs this time of year.
It's also a transition to get him to start wearing warmer clothes and because he is so active and sweats profusely, we can't dress him in sweaters and sweatshirts. He can't tell us when he is too cold, so we need to watch for other signs. This time of year is so common for illness and unfortunately he can't inform us when he doesn't feel well until it actually happens. I'm not even sure if he feels the same uncomfortable sick feelings we do.
The long breaks from school can really throw him off. Even just having the one extra day on a long weekend means he usually puts up a fight to get ready for school on the following Monday. His whole routine is interrupted with the holidays...more traveling, more people around him, different food, eating at different places, away from his toys and familiar environment. We have to take much of this into consideration when deciding whether to stay overnight at family homes anymore. Now that we only live an hour from our parent's homes, that makes this so much easier to just come home to stay the night.
Too many people and too much to do in one day can overwhelm him so much...therefore, we also do not want to plan family Christmas' on the same day. We need to them to be separated so that he can have a break from the pressure of all of it. To us, we love to eat a variety of good food, listen to holiday music, visit with family we don't see very often, open presents and see what each other gave and received...but to him, that is sensory overload.
I have attached a link to the Autism Speaks page that gives tips on how to prepare and get through the holidays.
http://www.autismspeaks.org/inthenews/holiday_tips.php
I don't ever want anyone to think that our lack of participation is because we don't want to be there, but these things are not worth the stress put on him. I do not let his Autism dictate many things such as what food is put in front of him or other things that I just can't think of right now. He is not on a special diet, therefore I expect him to eat the same food we do and what is put in front of him...and hope that someday he will understand to be grateful for that blessing of food.
But I do need to let the Autism dictate the above things because the repercussions that can come from the sensory overload is far too great to even want to imagine. We choose our battles with our children and this is one battle that I choose to try to prevent as much as possible...just hope all will understand the reasons behind our decisions.
While so many families look forward to this time, I don't exactly dread it, but I do have so much more to consider now. While pregnant with Brycen, I yearned to be able to show him off to extended family which is what we did those first couple years (of course when possible around our work schedules and moving a few hours away). I was proud of my adorable little boy...and of course I am still proud, but I know that "showing" him off is different now.
We have so much to consider with him over these couple months. He gets very overwhelmed with too many people, therefore we will probably never be able to go to my extended family get togethers again and I have to be careful about what stores and when I take him there because of the crowds and time to wait in line that occurs this time of year.
It's also a transition to get him to start wearing warmer clothes and because he is so active and sweats profusely, we can't dress him in sweaters and sweatshirts. He can't tell us when he is too cold, so we need to watch for other signs. This time of year is so common for illness and unfortunately he can't inform us when he doesn't feel well until it actually happens. I'm not even sure if he feels the same uncomfortable sick feelings we do.
The long breaks from school can really throw him off. Even just having the one extra day on a long weekend means he usually puts up a fight to get ready for school on the following Monday. His whole routine is interrupted with the holidays...more traveling, more people around him, different food, eating at different places, away from his toys and familiar environment. We have to take much of this into consideration when deciding whether to stay overnight at family homes anymore. Now that we only live an hour from our parent's homes, that makes this so much easier to just come home to stay the night.
Too many people and too much to do in one day can overwhelm him so much...therefore, we also do not want to plan family Christmas' on the same day. We need to them to be separated so that he can have a break from the pressure of all of it. To us, we love to eat a variety of good food, listen to holiday music, visit with family we don't see very often, open presents and see what each other gave and received...but to him, that is sensory overload.
I have attached a link to the Autism Speaks page that gives tips on how to prepare and get through the holidays.
http://www.autismspeaks.org/inthenews/holiday_tips.php
I don't ever want anyone to think that our lack of participation is because we don't want to be there, but these things are not worth the stress put on him. I do not let his Autism dictate many things such as what food is put in front of him or other things that I just can't think of right now. He is not on a special diet, therefore I expect him to eat the same food we do and what is put in front of him...and hope that someday he will understand to be grateful for that blessing of food.
But I do need to let the Autism dictate the above things because the repercussions that can come from the sensory overload is far too great to even want to imagine. We choose our battles with our children and this is one battle that I choose to try to prevent as much as possible...just hope all will understand the reasons behind our decisions.
Tuesday, October 12, 2010
Top 10- Trying to find some humor!
I read this "Top 10" after another "Autism mom" posted it on Facebook today. Now, this is made to be funny...though there is definitely some truth to all of it. This just really made me laugh today! If I had read this a year ago, I probably would not have laughed and taken it much more seriously, but being that time has definitely helped me put more into perspective with a child on the spectrum, I could read this today in a whole different manner.
So here it is (taken from the Autism Support Network website and written by Lisa Jo Rudy)...
http://www.autismsupportnetwork.com/news/top-10-snappy-answers-annoying-comments-about-autism-29003923
Thank you, Beth, for sharing with all of us! I know we have never met (maybe someday we will!), but it means so much to me to have others out there that are in the same/similar position right now with this battle to lean on and get encouragement from!
So here it is (taken from the Autism Support Network website and written by Lisa Jo Rudy)...
http://www.autismsupportnetwork.com/news/top-10-snappy-answers-annoying-comments-about-autism-29003923
Thank you, Beth, for sharing with all of us! I know we have never met (maybe someday we will!), but it means so much to me to have others out there that are in the same/similar position right now with this battle to lean on and get encouragement from!
Saturday, September 25, 2010
"What is Autism?"
I frequently need to use other's words to describe my feelings, whether it is famous quotes or blog entries from Autism Speaks. Sometimes I feel trapped in my life, in that if I share exactly how I feel about something, someone will be upset. I have kept so many of my feelings and thoughts inside for the last year or longer and since I feel like I can't share those, I use what other people say to share them for me. Some day, I will get the strength to share exactly how I feel and be able to put it into words so others will understand, not get angry with me. This is me...and I'm starting to learn if you don't like me (or what my life involves, such as Brycen and advocating for all others with disabilities), then you just don't have to be a part of it. On most days, I feel so much support from so many around me...and then there are other days where I am so lonely and sad that this is how it will be forever. To those who send me simple messages of "you're doing a great job" "you're a good mommy," please know that you are my backbone right now. I know every mom and every person needs to hear they are doing a good job, it's part of human nature to seek out encouragement...but I feel that I need it more right now than ever. It makes me sad that I do not feel I have the support and encouragment from some of those people that are supposed to be the closest to me. I'm also sad that I sometimes have had to end relationships with others because I need to focus on what is going on in our lives. It's not because I am selfish or self-absorbed, but it's because I have no choice but to do that. I am only one person that can deal with only so much drama, and at some point, I have to push that aside and come to terms with there are two little kids that need me more than ever (one little boy especially) and they DESERVE a happy, determined, and loving mommy. I have to make choices about where we go, what we do, who we see, how much to do in one weekend, because of that reason. I'm also learning that those who really and truly understand, are the ones helping me figure these things out. The ones who don't, are the ones who are still questioning why we can't do that or go there or go at that time.
So, once again, here is another blog entry from Autism Speaks. This time written by a person that is friends with a parent of a child with autism. I feel like this is me writing "What is Autism". The part about hearing "I love you" or "Mommy" or the "pleading and begging" and the "not taking for granted", "frustrated grunts", "communication in scream"...this is our life.
http://blog.autismspeaks.org/2010/09/25/itow-what-is-autism/
So, once again, here is another blog entry from Autism Speaks. This time written by a person that is friends with a parent of a child with autism. I feel like this is me writing "What is Autism". The part about hearing "I love you" or "Mommy" or the "pleading and begging" and the "not taking for granted", "frustrated grunts", "communication in scream"...this is our life.
http://blog.autismspeaks.org/2010/09/25/itow-what-is-autism/
Tuesday, August 24, 2010
Are you kidding me?!
http://www.desmoinesregister.com/article/20100824/NEWS02/8240367/3-schools-cited-for-using-restraints-on-unruly-kids
It's not the article that has me thinking there are many, many ignorant and incompetent people out there. It's the comments left by those who have nothing better to do than criticize and degrade children with disabilities and their parents.
I don't expect you to go through and read the over 130 comments that were posted in response to this article when I read it at 2:30pm today, but you can get an idea of what I mean just by glancing over the first 20 or so. My question to all of these "readers" is how many of them have children with disabilities? Words cannot express my disappointment in how some people say that not all "warm bodies" should be allowed in public schools and criticizing this parent for her child's size. If any of these people that are commenting are knowledgeable in the area, they would know that seizure medicine also comes with side effects that can be weight gain and also a child with cerebral palsy is not usually able to be physically active. The other comment that tugged at my heart was that any child can be taught to follow rules and that if a "1 yr old" can do it, then anyone can. That is so not true! I can sit here and make teaching Brycen not to hit or throw things my full-time job, but it does not guarantee he will comprehend the rule taught 5 minutes later. His brain just doesn't have those connections like so many other children with disabilities.
Yes, I agree if a child has shown violent behavior 5 times, the parents do need to take ownership of this and possibly look for more specialized settings. I do believe this is a danger to many other children in this school and the teachers, and the behavior would interfere into others trying to learn. But I completely disagree with the many comments that all of these issues are stemming from everybody wanting to mainstream children with disabilities. If my son was in a classroom with only other children that are non-verbal, how does this teach him or give him examples of communication effectively? He needs to be mainstreamed for at least part of his day so he can see how this works. It's a proven fact that children learn best from each other...so why do some people think that is different for those with disabilities? These children have been dealt more than enough difficult things to deal with in their life, so why do they need more people judging them and their families for things that can often not be controlled? My child did not ask for Autism...I did not choose to have a child expecting him to have Autism...I am not a bad parent for wanting my child to be in the public school setting and in a mainstream classroom. The generalizations these "readers" are making are disgusting and ignorant. It makes me sick to think that this is what my children have to grow up reading...why can't we just accept everybody for who they are? These children are not criminals or murderers and should not be treated like one by being excluded from activities that everybody else in society gets to take part in such as school.
It's not the article that has me thinking there are many, many ignorant and incompetent people out there. It's the comments left by those who have nothing better to do than criticize and degrade children with disabilities and their parents.
I don't expect you to go through and read the over 130 comments that were posted in response to this article when I read it at 2:30pm today, but you can get an idea of what I mean just by glancing over the first 20 or so. My question to all of these "readers" is how many of them have children with disabilities? Words cannot express my disappointment in how some people say that not all "warm bodies" should be allowed in public schools and criticizing this parent for her child's size. If any of these people that are commenting are knowledgeable in the area, they would know that seizure medicine also comes with side effects that can be weight gain and also a child with cerebral palsy is not usually able to be physically active. The other comment that tugged at my heart was that any child can be taught to follow rules and that if a "1 yr old" can do it, then anyone can. That is so not true! I can sit here and make teaching Brycen not to hit or throw things my full-time job, but it does not guarantee he will comprehend the rule taught 5 minutes later. His brain just doesn't have those connections like so many other children with disabilities.
Yes, I agree if a child has shown violent behavior 5 times, the parents do need to take ownership of this and possibly look for more specialized settings. I do believe this is a danger to many other children in this school and the teachers, and the behavior would interfere into others trying to learn. But I completely disagree with the many comments that all of these issues are stemming from everybody wanting to mainstream children with disabilities. If my son was in a classroom with only other children that are non-verbal, how does this teach him or give him examples of communication effectively? He needs to be mainstreamed for at least part of his day so he can see how this works. It's a proven fact that children learn best from each other...so why do some people think that is different for those with disabilities? These children have been dealt more than enough difficult things to deal with in their life, so why do they need more people judging them and their families for things that can often not be controlled? My child did not ask for Autism...I did not choose to have a child expecting him to have Autism...I am not a bad parent for wanting my child to be in the public school setting and in a mainstream classroom. The generalizations these "readers" are making are disgusting and ignorant. It makes me sick to think that this is what my children have to grow up reading...why can't we just accept everybody for who they are? These children are not criminals or murderers and should not be treated like one by being excluded from activities that everybody else in society gets to take part in such as school.
Monday, August 2, 2010
Mitchell's story
I'm breaking a promise here in that I said all of my posts would be about Autism and how it affects Brycen and our family...but I feel this story is so important for many people to hear and read about as it affects a sweet, little boy and a fabulous and positive family!
Mitchell lives locally and has been battling an auto-immune deficiency disorder for years now. It's been ups and downs for this family since he was born and they are now finally in line for that long-awaited bone marrow transplant scheduled for the end of this month in Cinncinnati.
I am attaching the link to his Caring Bridge website (with permission from his mom, Kelly, of course). When I am having a rough day with Brycen, just reading one blog entry from Kelly on this site really puts into perspective how easy my life really is. I know many of you are also going to feel this way. I can't imagine being able to keep a decently clean and semi-germ-free home with two little ones, much less be so on top of things as Kelly has needed to be for years now, protecting Mitchell from anything and everything that could make him seriously ill.
Mitchell has had more hospitalizations, pokes and prods, etc than most of us will ever see in our life-time...and he's only FIVE!
Anyway, when life is getting rough for you with your day-to-day job, keeping a household running, paying the bills, shuttling the kids to and from school and other activities, try to put yourself in this family's shoes....I bet it only takes you two seconds to realize how precious life is, how strong a parent's love is for their child, and the sacrifices that are necessary to ensure your child(ren) are taken care of and healthy as possible.
I've said it many times before and will say it again...I do not know how parents like Kelly do this! I am grateful that Brycen is overall healthy and we have not had to endure days, weeks, and months of hospitals, needles, and medicines all to prevent a simple cold germ from making our child seriously ill.
Kelly is not the type of person that wants people to feel sorry for them...she is a mother of a special needs child like so many others that just wants people to understand they are fighting a battle right now and their every-day life is very different than the majority of others.
Please keep this family in your thoughts over the next several months as Mitchell is prepped for the transplant, receives the transplant, and is recovering as his body accepts the new cells and they begin fighting the battle for him. Also, please keep the anonymous donor in your thoughts as it takes a very special person to want to donate bone marrow to someone they don't even know!
http://www.caringbridge.org/visit/mitchellhewitt
Mitchell lives locally and has been battling an auto-immune deficiency disorder for years now. It's been ups and downs for this family since he was born and they are now finally in line for that long-awaited bone marrow transplant scheduled for the end of this month in Cinncinnati.
I am attaching the link to his Caring Bridge website (with permission from his mom, Kelly, of course). When I am having a rough day with Brycen, just reading one blog entry from Kelly on this site really puts into perspective how easy my life really is. I know many of you are also going to feel this way. I can't imagine being able to keep a decently clean and semi-germ-free home with two little ones, much less be so on top of things as Kelly has needed to be for years now, protecting Mitchell from anything and everything that could make him seriously ill.
Mitchell has had more hospitalizations, pokes and prods, etc than most of us will ever see in our life-time...and he's only FIVE!
Anyway, when life is getting rough for you with your day-to-day job, keeping a household running, paying the bills, shuttling the kids to and from school and other activities, try to put yourself in this family's shoes....I bet it only takes you two seconds to realize how precious life is, how strong a parent's love is for their child, and the sacrifices that are necessary to ensure your child(ren) are taken care of and healthy as possible.
I've said it many times before and will say it again...I do not know how parents like Kelly do this! I am grateful that Brycen is overall healthy and we have not had to endure days, weeks, and months of hospitals, needles, and medicines all to prevent a simple cold germ from making our child seriously ill.
Kelly is not the type of person that wants people to feel sorry for them...she is a mother of a special needs child like so many others that just wants people to understand they are fighting a battle right now and their every-day life is very different than the majority of others.
Please keep this family in your thoughts over the next several months as Mitchell is prepped for the transplant, receives the transplant, and is recovering as his body accepts the new cells and they begin fighting the battle for him. Also, please keep the anonymous donor in your thoughts as it takes a very special person to want to donate bone marrow to someone they don't even know!
http://www.caringbridge.org/visit/mitchellhewitt
Wednesday, June 30, 2010
Next on the agenda: Creating a Sensory Diet
When I first heard the term "sensory diet," I thought it had to do with feeding your child a variety of textures, colors, smells, etc. But after a few OT appointments under our belt and a little more reading in "The Out-of-Sync Child" book, I have found out what a sensory diet really means...and I COMPLETELY agree that we need to include more of this daily.
In short, it means we need to include a variety of sensory input activities based on Brycen's mood and cravings. Overall, Brycen is hyperactive, so we need to encourage some quiet activities like playing with a tub of rice to encourage a slower activity or having him swing so he is getting that active sensory input he is craving, but is doing it in an orderly and calming way.
The activities will need to vary and be available to change as needed due to his change in moods and sensory needs that go along with sensory processing disorder.
Check out this link I attached that explains this more in depth and all the different areas that a sensory diet includes! It's a lot of information to take in, especially when I know it will need to be addressed daily to ensure his sensory needs are being met...but to combine this with all the therapy appts, another toddler to keep entertained, housework, and the responsibilities of mine and Mike's jobs...Wow, it's definitely going to take some time to get into a routine of incorporating these examples every day as he needs them!
Tuesday, June 29, 2010
Instead of a link to this "essay", I chose to copy it over to the blog so that it was more accessible to all the readers. The Autism speaks blog is always posting such wonderful essays like this written by parents and others affected by autism...sometimes by children themselves that are on the spectrum. This specific essay should empower all of us to know that it is possible...there can be a "remission" for children with autism...it comes at different times for different children, and may not be possible for all, but like this mother said "Ignorance holds you back, knowledge is power."
Many of you have questioned over the last year either to me or to others when I take the time "to breathe" and I typically answer with all the things that we do as a family, as a couple, by myself...but honestly, what I really want to answer is "I will take time to breathe when my child can talk, communicate, and play just like yours." So, next time you question when I breathe, please remember the difference between my life and yours, between my personality and yours, between my personal experiences and yours...and I can promise you that I know you also have obstacles you are facing, and I will never question you!
In Their Own Words – Autism Remission?
June 28, 2010
This “In Their Own Words” essay was submitted by Orfa De armas of Seattle, Wash. who has a son with autism.
"I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.
So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?
Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey.
Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.
So, if this analogy is right, does that make Frankie an autism survivor?
Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.
Then, why on Earth am I so shocked at what I heard today?Perhaps I’m shocked because I never really expected to win the battle?Perhaps because now I’m left without a purpose, without a mission?Maybe because at one point this became more about me than about Frankie?Is it because I feel that we belong in the autism community and we will have no identity left once we are out?
I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?
So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!"
Many of you have questioned over the last year either to me or to others when I take the time "to breathe" and I typically answer with all the things that we do as a family, as a couple, by myself...but honestly, what I really want to answer is "I will take time to breathe when my child can talk, communicate, and play just like yours." So, next time you question when I breathe, please remember the difference between my life and yours, between my personality and yours, between my personal experiences and yours...and I can promise you that I know you also have obstacles you are facing, and I will never question you!
In Their Own Words – Autism Remission?
June 28, 2010
This “In Their Own Words” essay was submitted by Orfa De armas of Seattle, Wash. who has a son with autism.
"I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.
So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?
Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey.
Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.
So, if this analogy is right, does that make Frankie an autism survivor?
Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.
Then, why on Earth am I so shocked at what I heard today?Perhaps I’m shocked because I never really expected to win the battle?Perhaps because now I’m left without a purpose, without a mission?Maybe because at one point this became more about me than about Frankie?Is it because I feel that we belong in the autism community and we will have no identity left once we are out?
I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?
So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!"
Saturday, June 5, 2010
Been one of those days...
It's really been a typical Saturday. Brycen and I ran a couple errands this morning before Mike went to work. He waited patiently in line at both the post office and Fareway (which should actually translate to a FABULOUS day!), would say "bye" to the lady at post office, but refused to say "bye" to the cashier at Fareway whom he sees quite often (unless you count "ahhhh" as saying "bye). He lined up toys most of the morning, shuffled them around a bit, looked at a train book from the library with Daddy before he left for work (which was eventually taken away due to throwing it around), sat on his sister a few times, laughed uncontrollably for some reason I will never know, jumped up and down while flapping his arms while watching a video, and ran back and forth from kitchen to couch for about 10 minutes straight. All before lunch time at 11:20!
Just a typical day in Brycen's active world. He hasn't been extremely aggressive or stimming a lot. He actually fell asleep at nap time, so I had about 45 minutes of peace and quiet which is rare with him home. He even said word approximations for both "Mama" and "Dada" this morning when prompted (we worked on this a lot last night and had to show off to Daddy; note they were prompted MANY times and Mama sounds more like "baba", but it's progress)!
So, why am I having one of "those days" where I am sad and I look at him with tears in my eyes, wondering "why"?! I am never going to understand this whole grieving thing! Just when it seems like acceptance is around the corner, I get depressed and anxious, wondering about the answers to those gazillion questions I have: how did this happen to him, did I do something wrong, what does the future hold, will he learn to communicate effectively, can I protect him from those people who don't understand him, will he have a best friend some day to share secrets with, what will happen when I am no longer here to fight for him and care for him, etc.
So I decided to turn to the Internet for some uplifting stories, research, pretty much anything to remind me of how good I have it and how much hope there is for children like Brycen. I ended up on YouTube, watching videos of Autism Awareness and parent's stories of "recovery" (I say that loosely, not because I don't believe it CAN happen, but I think most parents of a child with Autism will not fully believe this until it happens to them).
I found this fabulous music video of Mark Leland performing his song about Autism called "Missing Pieces." I know I have heard it before, but I think after hearing this song and actually LISTENING to the words...words cannot express how it made me feel! Not saying it was a good feeling or a bad feeling...but it just made me FEEL! I know it's about 5 minutes long and you may think you don't have the time to watch/listen to it, but PLEASE DO...Do it for Brycen and for hope for all those other children out there like Brycen!
Friday, May 21, 2010
2 great articles from CNN.com & Famous parents of children with autism
I've posted links to two articles that I found on CNN.com that were specifically about autism...a parent being in denial (did you know the actress that played Frenchy in Grease has a son with autism?) and having breakthroughs, as well as another article about how meltdowns affect both child and parent including the effects judgement from the public has on a parent.
I hope you find these articles just as interesting as I did!
Also, did you know the following well-known people have a child with Autism and most are very active in the advocating and fundraising for organizations like Autism Speaks?!
Aidan Quinn-actor that has a daughter with autism
Jenny McCarthy- actress, author, and comedian that has a son with autism
Edward Asner- actor that has a son with autism
Joe Mantegna- actor, director, writer, producer with a daughter with autism
Gary Cole- actor that has a daughter with autism
John Travolta- actor whose son with autism died of a seizure almost a year ago
Dan Marino- former NFL quarterback that has a son with autism and created the Dan Marino Foundation
Doug Flutie- former NFL star that has a son with autism and created the Doug Flutie Jr. Foundation for Autism, Inc
Greg Haugen- former boxing champion who has a grandson that is diagnosed with autism and created the Greg Haugen Foundation- Fight against autism
William Christopher- actor (famous for his role on Mash) who has a son diagnosed with autism
Sylvester Stallone- actor that has a son diagnosed with autism
Holly Robinson Peete- actress and author, finalist on the current Celebrity Apprentice/chose her Autism foundation as her charity for the show, has a son with autism and actively fundraises for autism with the foundation she created.
Isn't it amazing how many well-known people out there have children with autism? They could use their celebrity status to raise money to improve awareness, education, and for research to find a cure...while many do, it would be nice to see all of them come into the limelight about this and share their experience to help those who are now going through the diagnosis of their own child and starting the fight of their lives.
Study debunks the myth that parents of a child with autism have higher divorce rates
http://www.businessweek.com/lifestyle/content/healthday/639278.html
I don't really need an article to tell me about divorce rates, as both Mike and I have parents and grandparents that are still married and honestly, I think that may be the most influential thing when determining if someone is more likely to divorce over another. I agree that parents of children with autism have far more obstacles than the parent of the typical children, but I disagree that we have more obstacles than parents of children with other chronic and life long disabilities. With Autism, my son does not have a shortened life span...he may be at higher risk of accidents or running out into traffic and may be more likely to be seriously injured that way, but overall he should live a full and healthy life if I keep him close and do my best to protect him from those dangerous situations. I can't imagine being the parent of a child that faces death on a regular basis or a parent of a child that has to have frequent surgeries on major body parts like the heart or brain. I think those things are far more stressful than the symptoms of autism would be...the only difference I can see is if the surgery can cure something, that would be a relief in the long run, whereas we all know there is nothing to cure Autism.
So back to the divorce article, I honestly have no clue how a single parent of a child with autism could do it! It's stressful enough when you have another person to talk things out and to help make decisions, as well as to take over for a few minutes during a meltdown so that you can take your own time-out. If I didn't have Mike to do that...well, I don't even want to think of that because it's not going to happen.
I don't really need an article to tell me about divorce rates, as both Mike and I have parents and grandparents that are still married and honestly, I think that may be the most influential thing when determining if someone is more likely to divorce over another. I agree that parents of children with autism have far more obstacles than the parent of the typical children, but I disagree that we have more obstacles than parents of children with other chronic and life long disabilities. With Autism, my son does not have a shortened life span...he may be at higher risk of accidents or running out into traffic and may be more likely to be seriously injured that way, but overall he should live a full and healthy life if I keep him close and do my best to protect him from those dangerous situations. I can't imagine being the parent of a child that faces death on a regular basis or a parent of a child that has to have frequent surgeries on major body parts like the heart or brain. I think those things are far more stressful than the symptoms of autism would be...the only difference I can see is if the surgery can cure something, that would be a relief in the long run, whereas we all know there is nothing to cure Autism.
So back to the divorce article, I honestly have no clue how a single parent of a child with autism could do it! It's stressful enough when you have another person to talk things out and to help make decisions, as well as to take over for a few minutes during a meltdown so that you can take your own time-out. If I didn't have Mike to do that...well, I don't even want to think of that because it's not going to happen.
Friday, April 16, 2010
Autism Myths
I am attaching a link to a site that lists myths about Autism that a friend recently posted on Facebook (thanks Angie!). It's amazing that people still believe these things several years after Autism has come into the news and society is being faced with it! The best is when it says that people believe all people with autism are alike based on seeing the movie Rainman. LOL! Rainman was released in 1988 and Autism was still so foreign to so many people at that time and research was just starting to come around.
One thing to note with this article is that I don't appreciate them using "autistic people" through the entire thing. I don't call you a "cancerous woman" or "diabetic man"....so please do not label my child as "autistic" like that is all he is. He is a child with Autism, as Autism does not define him...it is a part of him that he is fighting just like a person with cancer is fighting back against their disease!
http://autism.about.com/od/whatisautism/tp/topmyths.htm
One thing to note with this article is that I don't appreciate them using "autistic people" through the entire thing. I don't call you a "cancerous woman" or "diabetic man"....so please do not label my child as "autistic" like that is all he is. He is a child with Autism, as Autism does not define him...it is a part of him that he is fighting just like a person with cancer is fighting back against their disease!
http://autism.about.com/od/whatisautism/tp/topmyths.htm
Thursday, March 25, 2010
Regression Explained...Finally!
I have searched and searched over the last many months to find a good article on regression in children that are now diagnosed with Autism. Regression is probably the least understood aspect of Autism to people that have never worked with a child who has regressed. So many people don't quite understand how a child can develop language and other skills...and then all of a sudden "lose" it. Well, we didn't understand that either until we heard about it...and realized that Brycen fit perfectly into the puzzle of regression. I think that is why many people first questioned Brycen's inital diagnosis also as the last time they really spent time with him, he was a jabbering, making eye contact, mostly typical child. His regression happened over about 5-6 months time and was so slow that we didn't even notice the language loss at first. We really didn't notice it until he went from a few dozen words to only a handful as we also had a newborn that we were taking care of that of course took up a lot of time. The pictures above were taken when Brycen was about 1 1/2 before he regressed. Notice he had attention span to sit and color, great eye contact with camera, and he was actually tolerating his first haircut with no screaming or tantrums. When I look at these pictures, it makes me a little sad thinking about how much has changed...but then again, he is still my baby then and now and his regression doesn't change that!
Anyway, here is a blog article I just found from Autism Speaks that addresses regression. I think this may give people a little more understanding about what it is and how it happens...though of course we still don't know the why or the way to fix it...but at least explaining it is a great start!
http://blog.autismspeaks.org/2010/03/25/understanding-regression-in-autism-through-direct-assessment-from-infancy/
Anyway, here is a blog article I just found from Autism Speaks that addresses regression. I think this may give people a little more understanding about what it is and how it happens...though of course we still don't know the why or the way to fix it...but at least explaining it is a great start!
http://blog.autismspeaks.org/2010/03/25/understanding-regression-in-autism-through-direct-assessment-from-infancy/
Wednesday, January 27, 2010
Iowa Autism Council makes recommendations to the state
This article summarizes the recommendations the IA Autism Council is presenting to the government in order to give the most support to children and adults affected by autism. Currently, most children that are diagnosed with Autism, are put on a long waiting list for the Ill & Handicapped Waiver and they have to wait 18months or longer to access Medicaid insurance and other support like respite services for the parents. Some children, like Brycen, are found to have an additional diagnosis that may qualify them for the Intellectual Disablities Waiver which currently does not have a waiting list, but what about those children that are found to only have Autism or Aspergers? They not only sit on a waiting list to start services with I&H, but then this waiver only takes them to age 18 and then the parents need to fight to find a different waiver they may qualify for. We all know that at this time, Autism is a lifelong disorder...it does not disappear at age 18 like this waiver seems to think it does. Improvements need to be made to form a specific Autism Waiver that is specific to the needs of families of children with autism. We all know that early intervention with children diagnosed with Autism is of the uttermost importance in order to make as much progress as possible with socialization skills and speech delays. Hundreds, if not thousands, of adults with autism in Iowa currently do not qualify for Medicaid insurance and do not have the means to hold a good paying job, housing, etc without the assistance of a support staff, but without services, they cannot get support staff to help them live their lives as independently as possible. Much less most private insurance companies will not pay for therapies needed by children and adults with Autism. So what do these families do? They either do not have their children receive the necessary therapies because they can not afford them, cannot afford transporting them to and from, and cannot afford to take off work to accompany them to the therapies. OR the family chooses to go deep into debt because they want to do anything possible to help their child.
As you can see, I am very passionate about this subject and I was long before Brycen was diagnosed with Autism. This is a rising epidemic in Iowa, the country and across the world, but it seems that though they are talking about it at government sessions, nothing is being done to help these children, families and adults out!
1 IN 110 CHILDREN ARE CURRENTLY DIAGNOSED!
http://www.kwwl.com/global/story.asp?s=11889857
As you can see, I am very passionate about this subject and I was long before Brycen was diagnosed with Autism. This is a rising epidemic in Iowa, the country and across the world, but it seems that though they are talking about it at government sessions, nothing is being done to help these children, families and adults out!
1 IN 110 CHILDREN ARE CURRENTLY DIAGNOSED!
http://www.kwwl.com/global/story.asp?s=11889857
Friday, January 22, 2010
"Welcome to the Community"
Every week I get emails from the Autism Speaks group and they frequently include stories written by others who are also experiencing a child or other family member on the spectrum. This story tugs at my heart as I remember feeling the same way not too long ago...the emotions are still so fresh. Please read this story and try to put yourself in this parent's shoes...and then when you are out in the community and see a child that is being "naughty" or "needs a spanking" (these are personal things I have heard from a couple at Wal-mart a few months ago with Brycen), remember there may be more to the story. Parents of children with disabilities, as well as adults with disabilities, should not have to stay home or only go to groups that are specific for children like their own just because they feel they or their child may be judged. I am not saying that everybody is this way, but in my years of working with children and adults that "act" or "look" a little "differently" than I do, I have watched people treat them in a not-so-nice way and I think it is absolutely horrible that some people cannot accept that others are different and most of the time, they do not choose to be. So, please, read this story and think of all the parents out there in this world that feel this way. Oh, and I actually wish there was a group in Storm Lake where we could get our children with disabilities together on a regular basis, because I really feel Brycen can learn a lot from what other children are experiencing!
http://www.autismspeaks.org/community/ownwords/intheirownwords_butler.php
http://www.autismspeaks.org/community/ownwords/intheirownwords_butler.php
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