We have used Melatonin (3mg tab) every night for the last 8 nights. Knowing that it may take weeks to work (if it works at all), we are very happy with the progress so far. On the second night, we noticed he became sleepy faster than without. He has fallen asleep faster and without as much whining since that second night. He has woken during the night 4 times and has slept through the night (9 hours+) 4 times. We are not getting too excited yet as he does have these spurts every once in awhile where he will sleep through for a week and then he has weeks of not sleeping through at all.
As for behaviors during the day following the last 3 nights in a row of sleeping through the night...have not decreased at all. We still find ourselves constantly redirecting him away from tackling, headbutting, and pulling on Aubree, wrestling and throwing toys, spitting, his constant self-stimulating behaviors and more. The good news is that over the last couple weeks, we have not had to strap him into the high chair for time-outs (I hope I didn't just jinx this!). He seems to get the point if we sit him on the couch or on his bed and block him so he can't get down. Then it all starts again 5 minutes later... I guess 5 minutes of good behavior every couple hours is pretty good for a 3 year old in this situation! I'm looking forward to school starting in a few weeks and have high hopes that pre-school will have a positive impact on him and our family!
Sunday, July 26, 2009
Saturday, July 18, 2009
MORE RESEARCH
I have been pondering giving Brycen Melatonin supplements at night to help with his sleep. He has never been the best sleeper...but now it is making sense as to why he will wake around 2 or 3am and seem like he is ready for the day. If he does sleep "through the night," it usually doesn't last past 5-5:30am. I have messed with his bedtime and routine, activities prior to bed, decreased sugar in his diet, and shortened & lengthened nap time to try to find an easier solution to no avail. So, I wanted to research the use of Melatonin and children with Autism, but was lacking time and patience in the last few weeks to sort through all the articles on the internet. Mike has a wonderful and caring high-school classmate (Virginia) that did this for me...without even asking her! Neither Brycen nor I have even met her and it has been years since Mike has talked to her, so I am very grateful for her help with this and the interest she has taken with Brycen!
So, tonight is the first night! Right now, I only have tabs that I will need to crush and give him in pudding, so I am hoping he goes for that. If it seems like it works (may take weeks to be able to tell) I plan to order the liquid that I can add to his juice with bedtime snack. I think if we can extend his sleep during the night, not only will he be more rested and it may decrease the frequent behaviors during the day, but we will definitely be more rested and will have more patience to deal with those frequent behaviors during the day! WISH US LUCK!
http://www.autismspeaks.org/science/science_news/melatonin_supplements.php
http://www.forbes.com/feeds/hscout/2009/07/17/hscout629072.html
http://www.autism-society.org/site/PageServer?pagename=life_fam_stress
So, tonight is the first night! Right now, I only have tabs that I will need to crush and give him in pudding, so I am hoping he goes for that. If it seems like it works (may take weeks to be able to tell) I plan to order the liquid that I can add to his juice with bedtime snack. I think if we can extend his sleep during the night, not only will he be more rested and it may decrease the frequent behaviors during the day, but we will definitely be more rested and will have more patience to deal with those frequent behaviors during the day! WISH US LUCK!
http://www.autismspeaks.org/science/science_news/melatonin_supplements.php
http://www.forbes.com/feeds/hscout/2009/07/17/hscout629072.html
http://www.autism-society.org/site/PageServer?pagename=life_fam_stress
The Grieving Process
We have been blessed with wonderful friends and family that have been supportive as we have learned about Brycen's diagnosis and shared it with others! Many people have either commented on here, through email, or on Facebook about Brycen and shared their thoughts, opinions, and offering of support. We appreciate everybody's understanding as we move though the beginning of this and we have tried to be as objective as possible when reading the comments and opinions from people.
After reading through all the entries and comments once again today, I realized that I probably have not been sharing enough of the good things about Brycen! I don't want people to feel that I am only focusing on the negative things, but as this whole situation is so new to us, I think that is a part of the grieving process. Trust me, I know the positives and I share them frequently with people as they happen! The first thing I shared with Mike when he came home for dinner break today was about Brycen's fabulous time at the park this afternoon and how it seemed like he was actually socially interacting with another little girl there. I almost always call my Mom, my sister, or share it on Facebook when he imitates another word or has a good day. So, of course there are positives, but just like many other human beings in this world, I tend to dwell on the negatives more in times of stress.
Just like it is normal to grieve the death of a friend or family member, we are in the process of grieving the "loss" of a "typical" child. (And yes, there is a such thing as a "typical" child...this is a child that has achieved normal development for their age and reached all milestones within the average range given for each. If there was not a "typical" child, then there would be no way to determine if a child needs help in a specific area, and therefore many therapies and options would not be available to parents to assist in the child's growth in these areas.) Everybody's grieving is different...the length, the severity, the stages...but all parents (and many other people in the child's life) in these situations grieve someway, somehow. I have no idea where I am right now in the process, but I know for a fact that I have not reached "acceptance" and that is ok. What I do know is that we are being the best parents that we know how to be to Brycen! And he is behaving and trying the best way he knows how to at this time! Believe me in saying that is a difficult statement to say after a very long and exhausting week!
After reading through all the entries and comments once again today, I realized that I probably have not been sharing enough of the good things about Brycen! I don't want people to feel that I am only focusing on the negative things, but as this whole situation is so new to us, I think that is a part of the grieving process. Trust me, I know the positives and I share them frequently with people as they happen! The first thing I shared with Mike when he came home for dinner break today was about Brycen's fabulous time at the park this afternoon and how it seemed like he was actually socially interacting with another little girl there. I almost always call my Mom, my sister, or share it on Facebook when he imitates another word or has a good day. So, of course there are positives, but just like many other human beings in this world, I tend to dwell on the negatives more in times of stress.
Just like it is normal to grieve the death of a friend or family member, we are in the process of grieving the "loss" of a "typical" child. (And yes, there is a such thing as a "typical" child...this is a child that has achieved normal development for their age and reached all milestones within the average range given for each. If there was not a "typical" child, then there would be no way to determine if a child needs help in a specific area, and therefore many therapies and options would not be available to parents to assist in the child's growth in these areas.) Everybody's grieving is different...the length, the severity, the stages...but all parents (and many other people in the child's life) in these situations grieve someway, somehow. I have no idea where I am right now in the process, but I know for a fact that I have not reached "acceptance" and that is ok. What I do know is that we are being the best parents that we know how to be to Brycen! And he is behaving and trying the best way he knows how to at this time! Believe me in saying that is a difficult statement to say after a very long and exhausting week!
Thursday, July 16, 2009
A word from Dad
Trying to think of how to organize my thoughts so I could actually write a post has been my challenge. Here is my first ever attempt...
I think myself and my family as being "chosen". My whole life I always wondered why am I here or what am I doing? Now I can see what I'm needed for and why I'm here.
When I was a young kid I thought of fatherhood as going to work and providing for your family, those thoughts were so old fashioned and wrong. The most important thing I do as a Father starts with love, I love my wife and my kids but more importantly I tell them I love them everyday. That's why I have been "chosen" to have this family, to be the ultimate loving father and husband.
At work the other day I overheard a customer talking about how they were lucky to have kids that were healthy and well behaved. That got me thinking---sorry to say your not the lucky one I am. I have the "chosen" family, the adventures we are going to take will have much more meaning, we will overcome more obstacles, and do some of that most amzing things. On the outside it may look different but this is the "chosen" family. Not every family can be "chosen" so we are the lucky one's because we have been "chosen".
Mike
I think myself and my family as being "chosen". My whole life I always wondered why am I here or what am I doing? Now I can see what I'm needed for and why I'm here.
When I was a young kid I thought of fatherhood as going to work and providing for your family, those thoughts were so old fashioned and wrong. The most important thing I do as a Father starts with love, I love my wife and my kids but more importantly I tell them I love them everyday. That's why I have been "chosen" to have this family, to be the ultimate loving father and husband.
At work the other day I overheard a customer talking about how they were lucky to have kids that were healthy and well behaved. That got me thinking---sorry to say your not the lucky one I am. I have the "chosen" family, the adventures we are going to take will have much more meaning, we will overcome more obstacles, and do some of that most amzing things. On the outside it may look different but this is the "chosen" family. Not every family can be "chosen" so we are the lucky one's because we have been "chosen".
Mike
Wednesday, July 15, 2009
Looking for "What to Expect when you parent a child with Autism"
I don't know why I tend to set myself up for extreme emotions...but for some reason I decided to pull out my "What to Expect- Toddler" book last night and look up the "normal" 36 month old. I'm sure you all know how that turned out. I really wish there was a "What to Expect" about autism, but unfortunately each child on the spectrum is so different that just isn't possible.
Rarely do I ever fall asleep when I really want to at night. Usually I lay awake for an hour or longer, thinking back to the days trials with Brycen (in addition to a 1 yr old) and trying to determine what the next day may include. Last night, I was experiencing many emotions following a couple very turbulent days with Brycen and a few other things going on in my life. I frequently plead with God at night to make it a little easier...then I wonder if there really is a God because if there is, he must know that I don't think I am strong enough to handle this for the rest of my life (please don't preach to me about there being a God in the comments!). My mind kept wandering to Brycen's future and how no one can tell me what it will be like, unlike how a parent of a "typical" child can just pick up their "What to Expect" book and read what they should expect over the next several months. Just like all parents, I want the best for my son...but now the best that he may have may not be the best that my daughter will have. I'm trying to be honest with myself that their futures are going to be very, very different.
Will Brycen ever be able to attend school in the "normal" classroom? Will his language ever develop to the point where I can have a conversation with him? Will he have the desire or ability to date? Will he be able to go to college? Will he be able to live on his own or will he need us or a paid worker to help him? Will he get married and have children if he so chooses? Will his family and friends always accept him for who he is? Will he ever comprehend potty training?
These are all things that I never thought of when I was pregnant with him or in the first two years, but now these are the questions that fill my mind when I think of his future.
Now I'm sure most of you reading this are tearing up a little...I am too! I cry just about every day now about him and wondering if I am being the best parent I can be. All I do know right now, is we love our son and would do anything for him and will never leave him to fight this on his own!
Rarely do I ever fall asleep when I really want to at night. Usually I lay awake for an hour or longer, thinking back to the days trials with Brycen (in addition to a 1 yr old) and trying to determine what the next day may include. Last night, I was experiencing many emotions following a couple very turbulent days with Brycen and a few other things going on in my life. I frequently plead with God at night to make it a little easier...then I wonder if there really is a God because if there is, he must know that I don't think I am strong enough to handle this for the rest of my life (please don't preach to me about there being a God in the comments!). My mind kept wandering to Brycen's future and how no one can tell me what it will be like, unlike how a parent of a "typical" child can just pick up their "What to Expect" book and read what they should expect over the next several months. Just like all parents, I want the best for my son...but now the best that he may have may not be the best that my daughter will have. I'm trying to be honest with myself that their futures are going to be very, very different.
Will Brycen ever be able to attend school in the "normal" classroom? Will his language ever develop to the point where I can have a conversation with him? Will he have the desire or ability to date? Will he be able to go to college? Will he be able to live on his own or will he need us or a paid worker to help him? Will he get married and have children if he so chooses? Will his family and friends always accept him for who he is? Will he ever comprehend potty training?
These are all things that I never thought of when I was pregnant with him or in the first two years, but now these are the questions that fill my mind when I think of his future.
Now I'm sure most of you reading this are tearing up a little...I am too! I cry just about every day now about him and wondering if I am being the best parent I can be. All I do know right now, is we love our son and would do anything for him and will never leave him to fight this on his own!
Friday, July 10, 2009
Joining the Club
I've been thinking about this post for some time and how I wanted to word some of these feelings and emotions I have. Part of my job responsibilities are to visit the families and children on my caseload to update their paperwork every year. There are quite a few children that have been diagnosed with an ASD that I supervise and lately I find myself comparing Brycen's "quirks" with theirs at these visits (of course to myself, not out loud). On a visit a few weeks ago, a mother said "Don't you feel like you have joined a club?" after I finally got the nerve to share our situation with her at the end of the meeting. After thinking about this on the drive home, I realized that explains a lot of how I feel right now. I have officially joined a "club" of parents, where the dues are extremely high (both financially and emotionally), no choice of joining, and it's a "club" I will be a member of for the rest of my life.
I have had a handful of people already tell me that they "know how I feel." I know they are saying this to be nice, because they care, or because they just aren't sure what to say to me. My response to them has been very honest in that they have no clue how I feel since not one of these people have a child that has been diagnosed with an ASD, or any developmental disorder for that matter. I'm not being mean at all, just being honest. Just because you may know a child, or work with a child, or be the aunt/uncle/grandparent/cousin of a child with an ASD...you still have no idea how it feels to raise a child with an ASD 24 hours a day. Just like I have no idea how a parent of a child with a life-threatening illness or with physical limitations may feel.
I also have heard "I'm sorry" from a few people in response to my explanation of Brycen's illness. I'm sure they say this for the same reasons as the other people, but once again I am going to be honest with them. Brycen is not dying...he does not have an illness that is life-threatening. To me, "I'm sorry" is something you say to someone that has just experienced or is going to experience death or a tragedy. I am DEFINITELY not sorry to have been chosen to be Brycen's mom, nor am I sorry that he has an ASD. I am grateful that overall he is a healthy and happy child and he is still the Brycen I gave birth to almost 3 years ago, despite developing some "quirks" along the way.
I guess what I am trying to say is that I am only human and am experiencing a lot of emotions attached to this situation that most of you will never understand... and that's OK. I don't expect you to understand how I feel or to know the exact thing to say to me in conversation about it. I have yet to determine if it is easier that I had knowledge and experience with Autism prior to Brycen's diagnosis. In some ways, I think it is easier because I understand the medical part of the diagnosis, as well as I'm aware of the therapies and treatments that are available. But then I know that my previous experience with Autism may prevent me from having as much hope for some kind of recovery of language or social skills that Brycen will need in order to live independently and go to college some day. I am having a hard time separating my work life/knowledge from my personal life/experience. I guess this will be a part of the grieving process I will go through before I can fully accept how our lives have changed.
I have had a handful of people already tell me that they "know how I feel." I know they are saying this to be nice, because they care, or because they just aren't sure what to say to me. My response to them has been very honest in that they have no clue how I feel since not one of these people have a child that has been diagnosed with an ASD, or any developmental disorder for that matter. I'm not being mean at all, just being honest. Just because you may know a child, or work with a child, or be the aunt/uncle/grandparent/cousin of a child with an ASD...you still have no idea how it feels to raise a child with an ASD 24 hours a day. Just like I have no idea how a parent of a child with a life-threatening illness or with physical limitations may feel.
I also have heard "I'm sorry" from a few people in response to my explanation of Brycen's illness. I'm sure they say this for the same reasons as the other people, but once again I am going to be honest with them. Brycen is not dying...he does not have an illness that is life-threatening. To me, "I'm sorry" is something you say to someone that has just experienced or is going to experience death or a tragedy. I am DEFINITELY not sorry to have been chosen to be Brycen's mom, nor am I sorry that he has an ASD. I am grateful that overall he is a healthy and happy child and he is still the Brycen I gave birth to almost 3 years ago, despite developing some "quirks" along the way.
I guess what I am trying to say is that I am only human and am experiencing a lot of emotions attached to this situation that most of you will never understand... and that's OK. I don't expect you to understand how I feel or to know the exact thing to say to me in conversation about it. I have yet to determine if it is easier that I had knowledge and experience with Autism prior to Brycen's diagnosis. In some ways, I think it is easier because I understand the medical part of the diagnosis, as well as I'm aware of the therapies and treatments that are available. But then I know that my previous experience with Autism may prevent me from having as much hope for some kind of recovery of language or social skills that Brycen will need in order to live independently and go to college some day. I am having a hard time separating my work life/knowledge from my personal life/experience. I guess this will be a part of the grieving process I will go through before I can fully accept how our lives have changed.
Friday, July 3, 2009
The sweetness in his little voice
If you are a parent, you know how proud and excited you feel when your baby says their first word and how fun it was to hear the dozens or so others that come over the next year or so. Now, imagine what it would be like to wake up and realize your child can now only say a dozen words unlike the dozens from a month or so ago...and then within weeks, they can only say a handful of words. It's called regression...and until a few months ago, I never realized that is one of the first signs of Autism in many children.
Brycen's first word was "ball," besides Dada and Mama of course. Before he was two years old, he was able to say at least two dozen words and a few phrases...and then within a matter of weeks, he was only able to say a handful of words. It happened so quickly and within a few months after his little sister was born, so we just put the blame on not being an only child anymore. Now at almost 3 years old...he can say about 5 words spontaneously and another 5 or so with prompts from us. I remember so much about his first words...the way he said "bye"...he would drag it out and say "buhbuhbuh-byyyyyyeeee" and it was so adorable! He "lost" the word "bye" for about 6 months and only recently did he start saying it again (with prompts from us). "Ball" is the only word he has consistently said on his own since that first time.
This morning I had to get up long before anybody else to get ready for an early meeting for work. I had just finished showering and dressed and kept the bathroom door open in case he would wake up (by the way, this was a night that he slept all night long which only happens a couple times a week so Mommy was very happy despite being up earlier than normal). When I was brushing my hair, he came running out of his bedroom just like he does every morning and stops outside the bathroom. I said "Hi buddy...you slept all night long like a big boy!" and the sweetest thing came out of his mouth "Hiiiii." Now for many parents, this wouldn't be a big deal as this is one of the first words most children say, including Brycen. But in Brycen's case, this word was "lost" for the last 6 or so months and this is the first time I have heard it since then. I almost started to cry...but instead, I got down and gave him a big hug and said "you said Hi like a big boy." I didn't want to make a big deal about it as I don't know if it is here to stay, but to hear his sweet voice respond to my words appropriately and to say an actual word that can be understood is such a big deal in our house! I could not stop thinking of this moment on the drive to my meeting, during the meeting, and the drive home...and obviously I still can't stop thinking about it!
Brycen's first word was "ball," besides Dada and Mama of course. Before he was two years old, he was able to say at least two dozen words and a few phrases...and then within a matter of weeks, he was only able to say a handful of words. It happened so quickly and within a few months after his little sister was born, so we just put the blame on not being an only child anymore. Now at almost 3 years old...he can say about 5 words spontaneously and another 5 or so with prompts from us. I remember so much about his first words...the way he said "bye"...he would drag it out and say "buhbuhbuh-byyyyyyeeee" and it was so adorable! He "lost" the word "bye" for about 6 months and only recently did he start saying it again (with prompts from us). "Ball" is the only word he has consistently said on his own since that first time.
This morning I had to get up long before anybody else to get ready for an early meeting for work. I had just finished showering and dressed and kept the bathroom door open in case he would wake up (by the way, this was a night that he slept all night long which only happens a couple times a week so Mommy was very happy despite being up earlier than normal). When I was brushing my hair, he came running out of his bedroom just like he does every morning and stops outside the bathroom. I said "Hi buddy...you slept all night long like a big boy!" and the sweetest thing came out of his mouth "Hiiiii." Now for many parents, this wouldn't be a big deal as this is one of the first words most children say, including Brycen. But in Brycen's case, this word was "lost" for the last 6 or so months and this is the first time I have heard it since then. I almost started to cry...but instead, I got down and gave him a big hug and said "you said Hi like a big boy." I didn't want to make a big deal about it as I don't know if it is here to stay, but to hear his sweet voice respond to my words appropriately and to say an actual word that can be understood is such a big deal in our house! I could not stop thinking of this moment on the drive to my meeting, during the meeting, and the drive home...and obviously I still can't stop thinking about it!
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