A couple months ago, I met another mom from the Storm Lake area that is going through a similar situation with her daughter, Ellie. We met by chance...she has business cards that she hands out in public when she cannot either find the words or doesn't have the time to explain the situation with Ellie to those she may encounter. She handed one of these cards to a cashier at Fareway and that card made it's way back to Mike, which of course he brought home to me. I immediately checked out the website/blog she has about Ellie and her family's fight with autism and left a comment for her, thanking her for sharing Ellie's situation with those that are not familiar.
To make a long story just a little shorter, we are becoming fast friends and have realized just how much we have in common. Both of our children developed typically until before their 2nd birthday and then started regressing. Both Ellie and Brycen are 3, both received AEA services, our youngest daughters are within a couple months of each other (she also has an older daughter) and we both are scared and keep an attentive eye on our younger ones for any sign of regression as they get closer to the age that Ellie and Brycen regressed. There are so many similarities, yet Brycen and Ellie are so different in their symptoms and behaviors related to autism.
I want everybody that reads this to keep Ellie and Angie in their thoughts and prayers as they continue to fight their battle with autism! Please check out Angie's blog about Ellie (I have attached a link below) and keep updated on her progress just like you do with Brycen.
Two different families...same fight against a horrible and tragic disorder that affects our two very different children!
http://fightautism.webs.com
Tuesday, November 24, 2009
What we have been waiting for has finally arrived!
I am so excited to share that as of this afternoon, Brycen officially has respite and Supported Community Living services approved to him! I received the Notice of Decision by fax this afternoon and am so pleased to begin the respite this week when I am back in Evansdale with family. My mom is going to be our main respite provider and Kelsi will be our main SCL provider. We are looking at hiring a second SCL provider as back up for when Kelsi goes home for Christmas break.
For SCL, Brycen will be working on three main goals for 20 hours per month: Safety, Independent Living, and Communication. We are waiting for written notification about the goals before Kelsi can officially start them, but these are things she has already been working with him on for months, so it will be an easy transition to just documenting them a certain way.
The respite hours will be a nice way for us to feel comfortable with leaving Brycen and give us a break. We chose my mom as she knows Brycen better than most and he is so comfortable with her, listens to her, and has fun with her! She and my Dad have already been doing so much to help us out by offering to come here in October and always willing to watch Brycen while I run errands and such while back in Evansdale. Now we won't feel so guilty about leaning on them so much since Mom will get paid for her help in all of this! We are already planning a few days for just Mike and I to go to Mall of America in February! Since Dad is now retired (and since Aubree is a Grandpa's girl), he can come along and hang out with Aubree while Mom works respite with Brycen when he is not in school.
It's been a long 3 months since starting the application process and moving the paperwork forward, but I have learned that all that hard work is paying off finally! All the calls, emails, faxes, visits to DHS...all felt like it was a job in itself, meanwhile continuing to work on paperwork for my own clients for work...it has all resulted in what we set out to achieve for Brycen...the insurance that will allow him further treatments and assessments needed, as well as the goal based program to help him become more independent!
For SCL, Brycen will be working on three main goals for 20 hours per month: Safety, Independent Living, and Communication. We are waiting for written notification about the goals before Kelsi can officially start them, but these are things she has already been working with him on for months, so it will be an easy transition to just documenting them a certain way.
The respite hours will be a nice way for us to feel comfortable with leaving Brycen and give us a break. We chose my mom as she knows Brycen better than most and he is so comfortable with her, listens to her, and has fun with her! She and my Dad have already been doing so much to help us out by offering to come here in October and always willing to watch Brycen while I run errands and such while back in Evansdale. Now we won't feel so guilty about leaning on them so much since Mom will get paid for her help in all of this! We are already planning a few days for just Mike and I to go to Mall of America in February! Since Dad is now retired (and since Aubree is a Grandpa's girl), he can come along and hang out with Aubree while Mom works respite with Brycen when he is not in school.
It's been a long 3 months since starting the application process and moving the paperwork forward, but I have learned that all that hard work is paying off finally! All the calls, emails, faxes, visits to DHS...all felt like it was a job in itself, meanwhile continuing to work on paperwork for my own clients for work...it has all resulted in what we set out to achieve for Brycen...the insurance that will allow him further treatments and assessments needed, as well as the goal based program to help him become more independent!
Friday, November 20, 2009
Haircuts...the trauma for all
I once again attempted a haircut tonight with Brycen...and eventually I was successful but not without feeling like I am torturing him and myself in the process! Brycen gets so scared, trembles, shivers, and yells anytime someone wants to cut his hair. Due to his extreme fear of hair dryers, razors and unfamiliar places, we only take him to the salon every 6 months or so for a touch up, but in the meantime, it's up to me to trim him up the best I can. In the salon, we have to hold him down on our lap to get it done while he screams, throws things, and hits the entire time.
I dread these times as I feel like the worst mother in the world when I see his response to seeing the scissors, comb, and a towel. I've tried to wet it down with a water bottle, but that also scares him so I resort to getting it slightly damp and just working as fast as I can despite his constant moving, crying, and yelling. Every time the comb touches his hair or he feels the scissors graze his skin while cutting the hair on the back of his neck, he trembles like he is in pain.
I use lots of bribery (sucker, train movie) and tonight I promised him a trip to the store to see Daddy if he could do it. That calmed him for about 5 seconds and then it was back to the yelling and crying again. I wish I knew what he was feeling and why cutting the hair is so traumatic for him. He typically doesn't care when we need to scrub it in the bath, comb it after baths, or when we smooth down his hair to calm him at bedtime...so why does it all of a sudden bother him when we are touching his hair to cut it? I think this will always puzzle me...but in the meantime, he needs to have his haircut so I guess I get to feel like a bad Mom every couple months and suffer through the ordeal with him. I can only hope it will get better....or at least not get any worse than it already is to him!
Just in case you are wondering, I did follow through with the trip to the store to see Daddy too! I'm not sure if he remembered I promised that, but I wasn't going to take the chance at another tantrum following the haircut if I didn't follow through!
I dread these times as I feel like the worst mother in the world when I see his response to seeing the scissors, comb, and a towel. I've tried to wet it down with a water bottle, but that also scares him so I resort to getting it slightly damp and just working as fast as I can despite his constant moving, crying, and yelling. Every time the comb touches his hair or he feels the scissors graze his skin while cutting the hair on the back of his neck, he trembles like he is in pain.
I use lots of bribery (sucker, train movie) and tonight I promised him a trip to the store to see Daddy if he could do it. That calmed him for about 5 seconds and then it was back to the yelling and crying again. I wish I knew what he was feeling and why cutting the hair is so traumatic for him. He typically doesn't care when we need to scrub it in the bath, comb it after baths, or when we smooth down his hair to calm him at bedtime...so why does it all of a sudden bother him when we are touching his hair to cut it? I think this will always puzzle me...but in the meantime, he needs to have his haircut so I guess I get to feel like a bad Mom every couple months and suffer through the ordeal with him. I can only hope it will get better....or at least not get any worse than it already is to him!
Just in case you are wondering, I did follow through with the trip to the store to see Daddy too! I'm not sure if he remembered I promised that, but I wasn't going to take the chance at another tantrum following the haircut if I didn't follow through!
Friday, November 13, 2009
What a week!
We have had an interesting week here! Aubree left on Monday to stay in Evansdale with Grandma and Grandpa O and her daddy and I have really been missing her...but Brycen doesn't really seem to notice. One time when we asked him where Aubree was, he looked out the window at the car like I had left her in the car or something! I know he has enjoyed being an only child for the week and I have definitely enjoyed the special time we have had and getting to run errands together like old times!
I cannot even run the basic errand with both kids now, since I never know how Brycen will be, or if he will try to run from me and then I am chasing him with Aubree in tow. When he gets into one of his uncontrollable times where he is hitting, kicking, spitting, and pulling hair and I have to carry him screaming back to the car or wherever, there is no way I could do that safely with Aubree along. So, only having Brycen this week allowed me to take him everywhere with me! He went with me to Fareway multiple times which he always enjoys seeing Daddy and helping to push the cart. And he was on his best behavior most of the week and was very good in the store each time!
Mike and I went to our first Autism support group this last Tuesday where we met a few people that also have children on the Autism Spectrum. It was nice talking and sharing with people that are at different stages of raising a child on the spectrum and getting advice on where to go from here. Mike and I have agreed this is something we need to involve ourselves in no matter where we are moved to. I think it is very important that not only do we have family and friends that know us supporting us, but having others out there that may not know us as well, but know our situation even better than we do sometimes! We are grateful to Dr. Grant (who I saw all through my pregnancy with Aubree and who delivered her) as he originally mentioned the support group to me this last summer and to his wife who has been a great support talking to Mike at the store when she is shopping. We are also grateful to Angie, who I may have just met here in Storm Lake, but feel that I can relate to more and more each day as we have children the same age and her 3 yr old girl also has been diagnosed with an ASD, and to Betsy who called us to invite us to our first meeting and made us feel so welcome!
The last several months have been a roller coaster of various emotions, tears, and grieving...but our understanding and acceptance of what God has chosen for us is getting easier each day. We both still have our rough days, but we have learned to lean on each other and talk it out more since we know best what each is going through. Even though we have plenty of friends and family that support us, we know that we couldn't do this without each other and that is the best support we can ever give to ourselves and both Brycen and Aubree as we continue to confront Autism!
I cannot even run the basic errand with both kids now, since I never know how Brycen will be, or if he will try to run from me and then I am chasing him with Aubree in tow. When he gets into one of his uncontrollable times where he is hitting, kicking, spitting, and pulling hair and I have to carry him screaming back to the car or wherever, there is no way I could do that safely with Aubree along. So, only having Brycen this week allowed me to take him everywhere with me! He went with me to Fareway multiple times which he always enjoys seeing Daddy and helping to push the cart. And he was on his best behavior most of the week and was very good in the store each time!
Mike and I went to our first Autism support group this last Tuesday where we met a few people that also have children on the Autism Spectrum. It was nice talking and sharing with people that are at different stages of raising a child on the spectrum and getting advice on where to go from here. Mike and I have agreed this is something we need to involve ourselves in no matter where we are moved to. I think it is very important that not only do we have family and friends that know us supporting us, but having others out there that may not know us as well, but know our situation even better than we do sometimes! We are grateful to Dr. Grant (who I saw all through my pregnancy with Aubree and who delivered her) as he originally mentioned the support group to me this last summer and to his wife who has been a great support talking to Mike at the store when she is shopping. We are also grateful to Angie, who I may have just met here in Storm Lake, but feel that I can relate to more and more each day as we have children the same age and her 3 yr old girl also has been diagnosed with an ASD, and to Betsy who called us to invite us to our first meeting and made us feel so welcome!
The last several months have been a roller coaster of various emotions, tears, and grieving...but our understanding and acceptance of what God has chosen for us is getting easier each day. We both still have our rough days, but we have learned to lean on each other and talk it out more since we know best what each is going through. Even though we have plenty of friends and family that support us, we know that we couldn't do this without each other and that is the best support we can ever give to ourselves and both Brycen and Aubree as we continue to confront Autism!
Wednesday, November 4, 2009
Jealousy...normal I guess
As the days, weeks, and months go by, it is definitely getting easier to accept what God has dealt us with Brycen. But I still have many days where I feel so much jealousy...at the store when I hear a toddler saying clear words, when friends/family comment on Facebook about their child learning their ABC's or counting, when seeing/hearing a 3 yr old is successful in potty training, when a 3 yr old is put in time-out and actually sits there, when two siblings are playing together outside or at the playground...and the list goes on. I feel jealous when I see these things, but then again I know that as parents to Brycen, we will never take a simple word he says or accomplishment he learns for granted!
I feel bad when I feel this way, but I just can't help it! I compare Brycen to other children, mostly to determine what we seriously need to work on that is typical for his age, but I also find myself once again wondering "why?" I think I will never stop wondering that...I think it is human nature to always question the things that happen to us, whether good or bad.
When I was pregnant with Aubree, Mike and I had already discussed not having any more children. Then when Brycen was initially diagnosed, we confirmed with ourselves that we didn't think it was fair to either of them if we had another child as Brycen needs so much of our attention and energy. But then I also wonder if that is fair to Aubree...she will not know what it is like to have a sibling to play with or to share secrets with and so on. When Mike and I are gone someday, it will be up to Aubree to take care of Brycen (unless of course we experience some wonderful research miracles that help him to become more independent and find successful treatments for him!). I see the joy in her little face and hear the constant giggles for those few moments each day when he pays attention to her! She doesn't usually mind when he knocks her over or purposely runs into her, because she is craving any kind of attention he will give her. Then, within seconds, I watch as she is following him around, trying to capture his attention and wanting him to play like a typical sibling would. It makes me sad that she may never have that close sibling relationship...but then again, maybe they will have a different type of close relationship where she will become more of a mother to him and will teach him things as they are growing up.
So, I guess though I may be jealous of some things...I know that there is positive that goes along with the negative. How the day starts or what happens during the day will determine whether I view the glass as half full or half empty that day...and that view can change many times throughout the day!
I feel bad when I feel this way, but I just can't help it! I compare Brycen to other children, mostly to determine what we seriously need to work on that is typical for his age, but I also find myself once again wondering "why?" I think I will never stop wondering that...I think it is human nature to always question the things that happen to us, whether good or bad.
When I was pregnant with Aubree, Mike and I had already discussed not having any more children. Then when Brycen was initially diagnosed, we confirmed with ourselves that we didn't think it was fair to either of them if we had another child as Brycen needs so much of our attention and energy. But then I also wonder if that is fair to Aubree...she will not know what it is like to have a sibling to play with or to share secrets with and so on. When Mike and I are gone someday, it will be up to Aubree to take care of Brycen (unless of course we experience some wonderful research miracles that help him to become more independent and find successful treatments for him!). I see the joy in her little face and hear the constant giggles for those few moments each day when he pays attention to her! She doesn't usually mind when he knocks her over or purposely runs into her, because she is craving any kind of attention he will give her. Then, within seconds, I watch as she is following him around, trying to capture his attention and wanting him to play like a typical sibling would. It makes me sad that she may never have that close sibling relationship...but then again, maybe they will have a different type of close relationship where she will become more of a mother to him and will teach him things as they are growing up.
So, I guess though I may be jealous of some things...I know that there is positive that goes along with the negative. How the day starts or what happens during the day will determine whether I view the glass as half full or half empty that day...and that view can change many times throughout the day!
Monday, November 2, 2009
Brycen's triumph over sorting colors
I am so excited to share with everybody what the teacher shared with me today when I picked Brycen up from school! They have successfully taught him how to sort different color figurines into the matching color bowls! They demonstrated to me before we left...she gave Brycen 4 different bowls (red, yellow, green, and blue) and a handful of various colored animal figurines. They play the game of "bounce, bounce, bounce goes the duck" and Brycen bounces the duck right over to the matching bowl! He did this about 7-8 times with different colors and it was amazing at how fast he did it...like it was second nature. And he was sooooo proud of himself and loved when the teacher picked him up and gave him a huge hug!
Earlier this summer, his speech pathologist had tried this with him and Brycen was not successful at that time. Now that he is getting the consistent teaching and the teachers are figuring out the way he learns best, he was able to accomplish this major task! I can't wait to practice this with him at home with various blocks and to move onto teaching him the difference between square, circle, etc and the names of the colors.
Kelsi, BV student that works with him twice a week, has been working hard with him on counting 1-2-3. Brycen is doing a great job of imitating this and holding up his fingers for each number like she does. She also took him successfully to the library to look and check out books a couple weeks ago. When she did this last Spring, he wanted to run in the aisles after some time of being there. But this time, his attention span was so much better and he sat down on the floor and looked at books and did not try to run at all!
It's really these little steps that make a difference! Despite having to deal with a difficult situation with him on Saturday during downtown trick-or-treating...it's these positive moments that definitely out-weigh the difficult and stressful times.
Earlier this summer, his speech pathologist had tried this with him and Brycen was not successful at that time. Now that he is getting the consistent teaching and the teachers are figuring out the way he learns best, he was able to accomplish this major task! I can't wait to practice this with him at home with various blocks and to move onto teaching him the difference between square, circle, etc and the names of the colors.
Kelsi, BV student that works with him twice a week, has been working hard with him on counting 1-2-3. Brycen is doing a great job of imitating this and holding up his fingers for each number like she does. She also took him successfully to the library to look and check out books a couple weeks ago. When she did this last Spring, he wanted to run in the aisles after some time of being there. But this time, his attention span was so much better and he sat down on the floor and looked at books and did not try to run at all!
It's really these little steps that make a difference! Despite having to deal with a difficult situation with him on Saturday during downtown trick-or-treating...it's these positive moments that definitely out-weigh the difficult and stressful times.
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