Mike and I started dating almost 9 years ago and have been married for over 5. I honestly cannot remember what life was like before him. Of course I remember the friends I hung out with, the jobs I had, but overall, I can't remember what day to day life was not seeing him and talking to him each day.
Only a few short months after Brycen was born, I remember thinking that I could not remember (nor did I want to) what life was like before him. What did I do with all my free time and where did all of my money go?
I also remember thinking this only months after Aubree was born. What was life like with just Brycen? It's amazing how you feel like you have it all, and then when you have another baby, your heart just grows with that baby.
Now, almost two years after Brycen began regressing, I find myself thinking back and trying to remember what life was like when he made eye contact...when you could understand the words he had...when he wasn't aggressive or flapping.
The one thing I can remember is sitting at the doctor's office for Aubree's 3 month check up on October 28, 2008. Brycen was sitting on the floor playing with colors, and after the doctor finished examining Aubree, the doctor asked if Brycen talked. "Of course he does" I remember saying and then listed a bunch of words that he could say. Then I realized I hadn't heard most of those words for awhile...maybe even weeks. I remember the doctor bringing out a chart and asking me a variety of questions and showing me where the typical 26 month old falls. It was then that I realized there was something deeper in Brycen. I can't remember leaving that appointment, I can't even remember if I called Mike at work to talk to him about it. I do remember calling AEA almost immediately after returning home per the doctor's suggestion and them saying that someone would call me back to get his information and set up an in home assessment. Then the memories end. I think I have chosen to block out this time of my life and have repressed these memories because it all seemed to happen so fast and was so scary. We didn't even talk to many people about it. I didn't share with most of my friends and a lot of family about the in home therapy that was starting...I actually didn't even tell them about all of it until Brycen received his first tentative diagnosis of Autism in June 2009. It just didn't seem to be any of their business and at the time, we really didn't think people would understand.
It's crazy how our mind works and we start to "forget" how life was before these things. If I really wanted to, I could play back many of the home videos we have of Brycen for the first two years of his life...but I just can't do it. I have not been able to watch any of those since he began regressing. It just hurts to think about what was there and what was "lost" for some reason that we may never know. I think I'd rather just live in today's world and know that we are doing everything in our power to help him bring those things back.
The number one thing we have learned when going through the past two years is that we will never, ever take one thing for granted in Brycen's (and Aubree's) development. The littlest things cause for celebration because they slowly add to those big things that most parents just take for granted in their typical children. Brycen's a fighter and he brings a special joy to all of those around him that let him into their life!
Tuesday, August 31, 2010
Wednesday, August 25, 2010
Brycen's first day of 4 year old pre-school!
I know all parents get nervous and excited at the same time for their child's first day of school no matter how old they are. Of course, I am not exception...though I feel like we had a lot riding on these first few moments once we get to the school. When we visited last week, Brycen began crying when we pulled into the parking lot. I ended up having to carry him into the school and when I sat him down outside of his new room, he began screaming and running down the hall to the room he was in last year. He needed a lot of bribery (suckers & chips) to go into the room and sit/play while I filled out the registration paperwork.
Once we got to school, he started smiling and jabbering away and was so willing to walk in like a big boy. When I pointed to his name on his hook in the hallway, he smiled and began shrugging his backpack off. It's amazing that after 3 months of not doing this, he immediately remembered this is where his backpack goes! He walked into the room and immediately sat down on the floor where they had a bin of blocks. The only sad thing for me is that he completely ignored the other children in the room. 3 others were already there (out of the 14-15 for the entire room) and were all sitting at a table coloring, while Brycen immediately began making a train of the blocks on his own. The good news is he gave me a hug and kiss (with a little force on my part) and waved "bye" like it was no big deal. For once, I was not the parent with the child crying or running around!
I had such mixed feelings walking out of the school with Aubree. I am looking forward to once again spending more time with her and being able to run errands without all the preparation and worrying about tantrums constantly, as well as for him to be around other children his age to learn social skills. On the other hand, I once again am having to relinquish my control of who he is around, the consistency of expectations, ensuring that he will receive ongoing encouragement of speech, how he is being approached, and protecting him for these several hours a day. When you have a child that needs so much monitoring and help in so many different areas, it's very hard to let others take control over that for 6 hours a day and then you worry about regression again and having to start over with all the progress we have made over the summer.
It all seemed to turn around when we went to the store to get his new backpack that night. I'm not sure if holding onto a backpack made him remember how much fun school is, but since that day, he has once again been trying to imitate the word "school" when I say it and also smiles each time we talk about it.
He carried his backpack around all morning and wouldn't even put it down while I got him dressed in his new Thomas the Train shirt. He loves Thomas so much that it's a nice comfort for him to have a picture of him on his shirt to look at. He didn't even want to take his backpack off to sit in his carseat!!
Once we got to school, he started smiling and jabbering away and was so willing to walk in like a big boy. When I pointed to his name on his hook in the hallway, he smiled and began shrugging his backpack off. It's amazing that after 3 months of not doing this, he immediately remembered this is where his backpack goes! He walked into the room and immediately sat down on the floor where they had a bin of blocks. The only sad thing for me is that he completely ignored the other children in the room. 3 others were already there (out of the 14-15 for the entire room) and were all sitting at a table coloring, while Brycen immediately began making a train of the blocks on his own. The good news is he gave me a hug and kiss (with a little force on my part) and waved "bye" like it was no big deal. For once, I was not the parent with the child crying or running around!I had such mixed feelings walking out of the school with Aubree. I am looking forward to once again spending more time with her and being able to run errands without all the preparation and worrying about tantrums constantly, as well as for him to be around other children his age to learn social skills. On the other hand, I once again am having to relinquish my control of who he is around, the consistency of expectations, ensuring that he will receive ongoing encouragement of speech, how he is being approached, and protecting him for these several hours a day. When you have a child that needs so much monitoring and help in so many different areas, it's very hard to let others take control over that for 6 hours a day and then you worry about regression again and having to start over with all the progress we have made over the summer.I'm sure each year will get easier with this and I have to remind myself this is only his second year of school, and the progress he makes each year will hopefully encourage me that relinquishing this control is benefiting him so much.
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.
Preparing for the transition ahead!
We're moving!!
Mike has been transferred to the Manchester store and began working at the new store 5 days after the transfer was presented to us. The kids and I will not be moving until the end of September for various reasons.
We are so excited for this time to come and for it to be to an area of the state that we are familiar with! Both of our families are going to be within an hour of us, Manchester also has a pediatric therapy clinic at their hospital similar to the one that Brycen receives therapy from currently, and we found a fabulous and huge rental home in Strawberry Point where the kids will have their own rooms, as well as a large yard and a play room!
With all this excitement also comes a lot of stress. It's no secret that Brycen does not embrace change and transitions are very difficult for him. We've decided that Brycen will not see the rental house until we have all of our stuff moved in and his room and toys are set up. We also decided it is not a good idea for him to be here the couple days before and while the movers are here to prevent him from stressing about his stuff being packed up and taken onto the truck. The first two days of Daddy being gone were fine...didn't even seem like Brycen noticed (no offense, daddy!). The last several days have been difficult. He is more aggressive, not sleeping as well, throwing tantrums...just not adjusting well to all the change around him. Little does he know that this is just the beginning!
Oh, I almost forgot to mention my phone call to what will be his new school in the Starmont school district! When I called, they immediately transferred me to the principal which I was so impressed with (note I have never even met, nor talked to the principal at his current school). She is taking care of everything for me! All we have to do is have Mike go in to fill out registration papers and give them a copy of his vaccination dates and latest physical. Before I made this call, I was dreading all the work that will be involved with transferring a child with an IEP and special needs to a new school across the state. It is such a relief to know that AEA and the school takes care of those things! Brycen will continue in a classroom that is half general education and half with IEP's with about 12 children total once there. The most wonderful thing the principal said to me during this conversation is when she asked "Should we take pictures of the classroom and teachers to send to Brycen ahead of time for the transition?" I immediately fell in love with this principal and her obvious knowledge of Autism and difficulty transitioning. For her to offer to do this specifically for him is so encouraging to me of the type of district he is going into! I look forward to meeting her and seeing him thrive in the new school!
Mike has been transferred to the Manchester store and began working at the new store 5 days after the transfer was presented to us. The kids and I will not be moving until the end of September for various reasons.
We are so excited for this time to come and for it to be to an area of the state that we are familiar with! Both of our families are going to be within an hour of us, Manchester also has a pediatric therapy clinic at their hospital similar to the one that Brycen receives therapy from currently, and we found a fabulous and huge rental home in Strawberry Point where the kids will have their own rooms, as well as a large yard and a play room!
With all this excitement also comes a lot of stress. It's no secret that Brycen does not embrace change and transitions are very difficult for him. We've decided that Brycen will not see the rental house until we have all of our stuff moved in and his room and toys are set up. We also decided it is not a good idea for him to be here the couple days before and while the movers are here to prevent him from stressing about his stuff being packed up and taken onto the truck. The first two days of Daddy being gone were fine...didn't even seem like Brycen noticed (no offense, daddy!). The last several days have been difficult. He is more aggressive, not sleeping as well, throwing tantrums...just not adjusting well to all the change around him. Little does he know that this is just the beginning!
Oh, I almost forgot to mention my phone call to what will be his new school in the Starmont school district! When I called, they immediately transferred me to the principal which I was so impressed with (note I have never even met, nor talked to the principal at his current school). She is taking care of everything for me! All we have to do is have Mike go in to fill out registration papers and give them a copy of his vaccination dates and latest physical. Before I made this call, I was dreading all the work that will be involved with transferring a child with an IEP and special needs to a new school across the state. It is such a relief to know that AEA and the school takes care of those things! Brycen will continue in a classroom that is half general education and half with IEP's with about 12 children total once there. The most wonderful thing the principal said to me during this conversation is when she asked "Should we take pictures of the classroom and teachers to send to Brycen ahead of time for the transition?" I immediately fell in love with this principal and her obvious knowledge of Autism and difficulty transitioning. For her to offer to do this specifically for him is so encouraging to me of the type of district he is going into! I look forward to meeting her and seeing him thrive in the new school!
Tuesday, August 10, 2010
A baby inside a 4 year old's body
As I sat and watched Brycen "play" this afternoon, I couldn't help but wonder what he is thinking. He continued to put his train track and train items in a line...not to run them around the track, but just in a line so he could then put his head on the floor and stare at them. When I suggested looking at books, he flipped over a couple pages and then he immediately put it in his mouth to chew on the Thomas board book. When I told him no, he started hitting his legs with it...not out of anger from me telling him "no," but because I think he still doesn't grasp what a book is and how you look at it. Some days, he'll flip pages and study the trains in the pictures before tossing it to the side or including it in his line. His jabbering...it's either odd noises that are very loud or he is just mute and in his own little world. While Aubree brings things to us and wants to show us everything "look, mama," Brycen has never done this and even when we sit and play directly with him, attempting to teach him appropriate play with an item, sometimes he doesn't even want our attention. At the beach yesterday, he would throw sand and I continued to tell him "no." His response was to shake his head "no" at me, but then within a minute he was doing it again. Whereas when I told Aubree "no," she thought it was funny and would purposely do it again to get my attention. I know Brycen was not doing it for attention...for some other reason his brain just doesn't put together his action with what I told him.
Our little boy is a baby inside of a 4 yr old's body.
When we took him to IA City last August, they rated him at a 16 month old level and when I discussed his progress with his SLP last month, he is still in that 16/18 month old development. In one entire year, our son only gained a possible 2 months of communication, socialization, and play skills! How is that possible when we spend so much time trying to work on things, he went to preschool for 9 months of that year, he's been in Speech and Occupational therapy 3x a week all summer??
It really is like having an infant all over again, but you can't just put them in their crib or bouncer to take a shower. He has the physical abilities to get into things and be aggressive towards his sister, but doesn't have the comprehension to know what he is doing is wrong like other 4 yr olds. When will I be able to take a shower longer than 3-5 minutes without the door open when I am alone with him, listening for any noise that will require me to jump out very fast? When will I be able to walk down the street without insisting he holds my hand for fear of him running into the street? When will I be able to take him to an event/activity without fearing the worst of a meltdown? When will I be able to hear him say "I love you"?
There are so many more questions I have...but who is going to give us those answers?! I hear the stories of "Sam" who is now talking up a storm with sentences once he started kindergarten, or "Sally" who can now be in the mainstream classroom for 1/2 the day without an aide...but not a single soul could predict this would happen for these two children, therefore nobody has any idea where Brycen will be in one, five, or 15 years. It's just one day at a time and we hope the next year just gets a little easier on the emotions, the finances, the social life, the understanding from friends and family that our life will always be different from their lives. Even if Brycen reaches "recovery," a family still needs to keep working on things for fear a traumatic event or change in life could trigger another regression...or even worse, something that can't even be explained could trigger one just like it did in Brycen between the ages of 2 and 2 /2. Please, please, please don't make us ever go through that part of his and our lives again!!
Our little boy is a baby inside of a 4 yr old's body.
When we took him to IA City last August, they rated him at a 16 month old level and when I discussed his progress with his SLP last month, he is still in that 16/18 month old development. In one entire year, our son only gained a possible 2 months of communication, socialization, and play skills! How is that possible when we spend so much time trying to work on things, he went to preschool for 9 months of that year, he's been in Speech and Occupational therapy 3x a week all summer??
It really is like having an infant all over again, but you can't just put them in their crib or bouncer to take a shower. He has the physical abilities to get into things and be aggressive towards his sister, but doesn't have the comprehension to know what he is doing is wrong like other 4 yr olds. When will I be able to take a shower longer than 3-5 minutes without the door open when I am alone with him, listening for any noise that will require me to jump out very fast? When will I be able to walk down the street without insisting he holds my hand for fear of him running into the street? When will I be able to take him to an event/activity without fearing the worst of a meltdown? When will I be able to hear him say "I love you"?
There are so many more questions I have...but who is going to give us those answers?! I hear the stories of "Sam" who is now talking up a storm with sentences once he started kindergarten, or "Sally" who can now be in the mainstream classroom for 1/2 the day without an aide...but not a single soul could predict this would happen for these two children, therefore nobody has any idea where Brycen will be in one, five, or 15 years. It's just one day at a time and we hope the next year just gets a little easier on the emotions, the finances, the social life, the understanding from friends and family that our life will always be different from their lives. Even if Brycen reaches "recovery," a family still needs to keep working on things for fear a traumatic event or change in life could trigger another regression...or even worse, something that can't even be explained could trigger one just like it did in Brycen between the ages of 2 and 2 /2. Please, please, please don't make us ever go through that part of his and our lives again!!
Friday, August 6, 2010
One year later- Where is Brycen now?
This month marks one year since Brycen's official Autistic Disorder diagnosis from U of I. What a year it has been!
I wanted to summarize where Brycen is now on his communication skills and various other areas we are working on. I apologize again for the length of the post, but if you really think about all the areas that Autism affects in his life, this is actually quite short!
VERBAL: With the exception of two words, all of Brycen's speech is prompted by us. About 95% of his words are considered word approximations as he does not use all the sounds present to say the entire word. For example, juice is one of the words he will occasionally say without a prompt, but it sounds like "ju." Mike and I estimate he says this word unprompted about 5 times each week, so not even daily. The second word that is sometimes unprompted is "no" and this also does not sound like "no" but is more "uh" while he shakes his head. Now to explain what I mean by "his words." Brycen has very few words he uses that can be understood by a very trained ear...estimation right now is probably 30-40. Most of these "words" only have one sound/syllable such as bubbles is "bu." Someone that does not spend a lot of time with him, would probably only understand a handful of these words since most of the sounds are missing. Compared to a year ago, I think he only had 5-10 imitated word approximations at that time, so he has shown some progress. Definitely not functional communication or conversations like the typical 4 yr old, but we take pride in every single word he does say because we know he has to work so hard for that!
OVERALL COMMUNICATION SKILLS: Brycen will now wave to someone to say "hi" and "bye" with prompts from us about 90% of the time. He will also imitiate both of the words with prompts of "say Hi" or "say bye." One year ago, Brycen was very hesitant around strangers but since he started school and therapy, he has grown so much in this area. He rarely does his yell at other people unless there is something else factoring in, such as it's time to eat, or he is just not having a good day. His eye contact is awesome! Of course, it varies depending on the day and the distractions around him, but overall he can maintain eye contact for a few seconds with most people. An example of when his eye contact will falter is at the doctor's office this week when the NP had already attempted to listen to his heart and lungs, and we were then trying to have him open his mouth so she could see his teeth and tonsils. He was already very irritated, so at that time his eyes would not meet ours and they were actually rolling around a lot almost in imitation of what happens during seizures. Brycen's gesturing and pointing has also improved! He can make more of his needs known, such as hungry or thirsty, he will point to the fridge or cupboard. If he wants to go outside, he will typically get his shoes and bring them to us with no prompts. When I point to something across the room, he frequently can follow my finger and find what I am talking about maybe 60-70% of the time. He is imitating actions and noises more than ever! This was an area he was really lacking which was making it very hard to teach him sign language. He just couldn't grasp the idea of imitating what we were doing with his own hands, which resulted in hand-over-hand all the time. This is also helping in the area of consonant sounds with attempting to verbalize things. I really hope this continues to improve, as it is necessary for a child to have this skill in order to learn from role modeling and verbal and non-verbal speech is basically learned through this.
SIGN LANGUAGE: Brycen currently uses the signs for more, please, thank you, and eat with prompts from us. We are now working on the sign for want, as the SLP is incorporating this with the 2 word phrase goal. So we are prompting him to sign "want" and then say a word. She started this on Wednesday, so we came home that evening and practiced with bubbles. I showed him the sign for want, used hand-over-hand, role modeling, and verbal prompts for about 1/2 hour and it didn't take long for him to figure out a modified version of the sign! We were so excited and he was so pleased with himself! This sign came so much faster than the others due to his increased ability to understand imitation. We will continue to work on this until the SLP gives us instructions on the next phase.
PICTURES: This is one area we really need to improve on. We have many pictures already made to help him transition and to know what to expect, as well as pictures of activities so he can make choices. Laura has found in speech therapy that he no longer needs pictures of activities to choose from as he understands what the choices are when she verbally tells him, and he uses pointing to tell her what he chooses. We also no longer need the picture schedule of brushing teeth as it now has become so routine to him, but the pictures of various visitors or houses we are visiting are still helping. This just prepares him for the change, though we haven't needed to do it every time as we forgot to get Erin's picture out the other day when she came over, and he was just fine!
BEHAVIOR: Brycen is still very aggressive. Most of his agression seems to stem from wanting to communicate something but not knowing how to do so. He does not have impulse control so when he is mad, it is immediate hitting or head butting. He throws, yells, hits, and pinches when he is angry and unfortunately, much of his anger is focused towards Aubree. Even if the situation is not even about her, he will seek her out to hit her on the back. Typical Time-outs are not a good match for Brycen. He can't be left alone, nor can he sit still due to his hyperactivity, so our method of discipline is to remove him from the area and go with him to his room to talk or just sit with him doing something else, or we remove the item causing the problem such as a toy or something. Brycen is easily overstimulated, so it does seem that aggressive behavior happens more at these times. We have been working on using a basic sensory diet and need to improve on this in that we provide him with at least one sensory activity including gross motor skills each hour to get out some of that input he is seeking. I hope to see improvement in this area in the future now that we know more about sensory diets and enlisting the help of the school to do this during the day too!
SLEEPING: Well, this is up and down. Sometimes he has weeks where he sleeps all night (9-10 hours) 5-6 times. Other weeks, he may only sleep one night through. He is still receiving one tbsp of liquid Melatonin in his juice about 20 minutes before bedtime to help him calm down and get sleepy. We still debate starting other medications for sleep right now due to his age and the side effects. My understanding of his sleep issues is that he seeks so much sensory input all day long, that his body still craves this during the night, so he may wake up needing to move around or needing that touch of another person to calm him. The other side is his lack of natural producing Melatonin. The typical person's brain continues to produce Melatonin while they are sleeping to keep them asleep. Brycen either doesn't produce any or he metabolizes what he does produce very fast, therefore he can't stay asleep.
ATTENTION SPAN: Anyone that spends even 5 minutes with Brycen will notice the constant fidgeting and movement. While he has the attention span to watch a 15 min episode of Curious George or Thomas the train, he has to be moving at all times. While I am typing this out, he is watching Thomas the Train on IPTV, and he is constantly moving his legs up to his head, rubbing his hands down his legs or arms, turning to lay a different way on the couch, etc. While this may be just sensory input he is craving, he could also be eventually diagnosed with ADHD since the correlation between ADHD and Autism is very high. For the time being, we do not want to medicate him for this and will continue to provide him with a lot of sensory input to help in this area. His attention span on structured activities like puzzles and books has increased tremendously! Originally his goal for speech therapy was to use a timer so he would stay on task for 5 minutes for each thing. Laura recently informed me that she no longer needs to use the timer as he can easily stay on task for 5 minutes, and if he is having difficulty, he is responding well to verbal prompts that he needs to do it so many more times until he can be done.
STIMMING: Brycen still does A LOT of stimming...lining things up, piling them together, shuffling toys around, running back and forth, flapping his hands, etc. We do redirect him on many things, but we also decided some things are just going to be Brycen such as lining things up. There is no harm right now of him wanting to line 10 toys up, so why make it a big deal? We do redirect the things like piling and shuffling as that is far from appropriate play. Brycen definitely has a "touch" of Obsessive-Compulsive disorder which also has a high correlation with Autism.
SOCIALIZATION: Over the last months of summer, Brycen has been showing more and more attention towards Aubree. We really have to give Aubree credit for this as she is great about watching what he is doing and then adapting to that so she can be involved. Some of the things they do together is each grab an end of a toy and run across the room. No, this is not typical play for a 4 yr old and 2 yr old, but it's something they are content to do together and requires Brycen to acknowledge and pay attention to Aubree which is the first step. With other kids (typically it is only the older ones that understand what to do with Brycen), he does not pay much attention to them unless they get in his face and take his hand. An example of this is when we visited for Ethan and Morgan's birthday party in June. Ethan took Brycen's hand and led him around the yard showing him things...before and after this, Brycen really did not even acknowledge Ethan and being outside with him, but once Ethan initiated this activity, Brycen went along with it. We have a long way to go in this area, and I honestly never expect him to reach the developmental level that corresponds with his chronological age just because this is a huge part of Autism. My hope for him in this area is to be to the point that he can be a typical kid in having at least one good friend to eventually invite over for sleepovers. I'm trying to be realistic in this area.
Now that I have typed away for almost an hour now, I'll save the summary of his goals for his new school year for the next post! I have high hopes, but also realistic hopes, of this school year and the potential for progress.
I wanted to summarize where Brycen is now on his communication skills and various other areas we are working on. I apologize again for the length of the post, but if you really think about all the areas that Autism affects in his life, this is actually quite short!
VERBAL: With the exception of two words, all of Brycen's speech is prompted by us. About 95% of his words are considered word approximations as he does not use all the sounds present to say the entire word. For example, juice is one of the words he will occasionally say without a prompt, but it sounds like "ju." Mike and I estimate he says this word unprompted about 5 times each week, so not even daily. The second word that is sometimes unprompted is "no" and this also does not sound like "no" but is more "uh" while he shakes his head. Now to explain what I mean by "his words." Brycen has very few words he uses that can be understood by a very trained ear...estimation right now is probably 30-40. Most of these "words" only have one sound/syllable such as bubbles is "bu." Someone that does not spend a lot of time with him, would probably only understand a handful of these words since most of the sounds are missing. Compared to a year ago, I think he only had 5-10 imitated word approximations at that time, so he has shown some progress. Definitely not functional communication or conversations like the typical 4 yr old, but we take pride in every single word he does say because we know he has to work so hard for that!
OVERALL COMMUNICATION SKILLS: Brycen will now wave to someone to say "hi" and "bye" with prompts from us about 90% of the time. He will also imitiate both of the words with prompts of "say Hi" or "say bye." One year ago, Brycen was very hesitant around strangers but since he started school and therapy, he has grown so much in this area. He rarely does his yell at other people unless there is something else factoring in, such as it's time to eat, or he is just not having a good day. His eye contact is awesome! Of course, it varies depending on the day and the distractions around him, but overall he can maintain eye contact for a few seconds with most people. An example of when his eye contact will falter is at the doctor's office this week when the NP had already attempted to listen to his heart and lungs, and we were then trying to have him open his mouth so she could see his teeth and tonsils. He was already very irritated, so at that time his eyes would not meet ours and they were actually rolling around a lot almost in imitation of what happens during seizures. Brycen's gesturing and pointing has also improved! He can make more of his needs known, such as hungry or thirsty, he will point to the fridge or cupboard. If he wants to go outside, he will typically get his shoes and bring them to us with no prompts. When I point to something across the room, he frequently can follow my finger and find what I am talking about maybe 60-70% of the time. He is imitating actions and noises more than ever! This was an area he was really lacking which was making it very hard to teach him sign language. He just couldn't grasp the idea of imitating what we were doing with his own hands, which resulted in hand-over-hand all the time. This is also helping in the area of consonant sounds with attempting to verbalize things. I really hope this continues to improve, as it is necessary for a child to have this skill in order to learn from role modeling and verbal and non-verbal speech is basically learned through this.
SIGN LANGUAGE: Brycen currently uses the signs for more, please, thank you, and eat with prompts from us. We are now working on the sign for want, as the SLP is incorporating this with the 2 word phrase goal. So we are prompting him to sign "want" and then say a word. She started this on Wednesday, so we came home that evening and practiced with bubbles. I showed him the sign for want, used hand-over-hand, role modeling, and verbal prompts for about 1/2 hour and it didn't take long for him to figure out a modified version of the sign! We were so excited and he was so pleased with himself! This sign came so much faster than the others due to his increased ability to understand imitation. We will continue to work on this until the SLP gives us instructions on the next phase.
PICTURES: This is one area we really need to improve on. We have many pictures already made to help him transition and to know what to expect, as well as pictures of activities so he can make choices. Laura has found in speech therapy that he no longer needs pictures of activities to choose from as he understands what the choices are when she verbally tells him, and he uses pointing to tell her what he chooses. We also no longer need the picture schedule of brushing teeth as it now has become so routine to him, but the pictures of various visitors or houses we are visiting are still helping. This just prepares him for the change, though we haven't needed to do it every time as we forgot to get Erin's picture out the other day when she came over, and he was just fine!
BEHAVIOR: Brycen is still very aggressive. Most of his agression seems to stem from wanting to communicate something but not knowing how to do so. He does not have impulse control so when he is mad, it is immediate hitting or head butting. He throws, yells, hits, and pinches when he is angry and unfortunately, much of his anger is focused towards Aubree. Even if the situation is not even about her, he will seek her out to hit her on the back. Typical Time-outs are not a good match for Brycen. He can't be left alone, nor can he sit still due to his hyperactivity, so our method of discipline is to remove him from the area and go with him to his room to talk or just sit with him doing something else, or we remove the item causing the problem such as a toy or something. Brycen is easily overstimulated, so it does seem that aggressive behavior happens more at these times. We have been working on using a basic sensory diet and need to improve on this in that we provide him with at least one sensory activity including gross motor skills each hour to get out some of that input he is seeking. I hope to see improvement in this area in the future now that we know more about sensory diets and enlisting the help of the school to do this during the day too!
SLEEPING: Well, this is up and down. Sometimes he has weeks where he sleeps all night (9-10 hours) 5-6 times. Other weeks, he may only sleep one night through. He is still receiving one tbsp of liquid Melatonin in his juice about 20 minutes before bedtime to help him calm down and get sleepy. We still debate starting other medications for sleep right now due to his age and the side effects. My understanding of his sleep issues is that he seeks so much sensory input all day long, that his body still craves this during the night, so he may wake up needing to move around or needing that touch of another person to calm him. The other side is his lack of natural producing Melatonin. The typical person's brain continues to produce Melatonin while they are sleeping to keep them asleep. Brycen either doesn't produce any or he metabolizes what he does produce very fast, therefore he can't stay asleep.
ATTENTION SPAN: Anyone that spends even 5 minutes with Brycen will notice the constant fidgeting and movement. While he has the attention span to watch a 15 min episode of Curious George or Thomas the train, he has to be moving at all times. While I am typing this out, he is watching Thomas the Train on IPTV, and he is constantly moving his legs up to his head, rubbing his hands down his legs or arms, turning to lay a different way on the couch, etc. While this may be just sensory input he is craving, he could also be eventually diagnosed with ADHD since the correlation between ADHD and Autism is very high. For the time being, we do not want to medicate him for this and will continue to provide him with a lot of sensory input to help in this area. His attention span on structured activities like puzzles and books has increased tremendously! Originally his goal for speech therapy was to use a timer so he would stay on task for 5 minutes for each thing. Laura recently informed me that she no longer needs to use the timer as he can easily stay on task for 5 minutes, and if he is having difficulty, he is responding well to verbal prompts that he needs to do it so many more times until he can be done.
STIMMING: Brycen still does A LOT of stimming...lining things up, piling them together, shuffling toys around, running back and forth, flapping his hands, etc. We do redirect him on many things, but we also decided some things are just going to be Brycen such as lining things up. There is no harm right now of him wanting to line 10 toys up, so why make it a big deal? We do redirect the things like piling and shuffling as that is far from appropriate play. Brycen definitely has a "touch" of Obsessive-Compulsive disorder which also has a high correlation with Autism.
SOCIALIZATION: Over the last months of summer, Brycen has been showing more and more attention towards Aubree. We really have to give Aubree credit for this as she is great about watching what he is doing and then adapting to that so she can be involved. Some of the things they do together is each grab an end of a toy and run across the room. No, this is not typical play for a 4 yr old and 2 yr old, but it's something they are content to do together and requires Brycen to acknowledge and pay attention to Aubree which is the first step. With other kids (typically it is only the older ones that understand what to do with Brycen), he does not pay much attention to them unless they get in his face and take his hand. An example of this is when we visited for Ethan and Morgan's birthday party in June. Ethan took Brycen's hand and led him around the yard showing him things...before and after this, Brycen really did not even acknowledge Ethan and being outside with him, but once Ethan initiated this activity, Brycen went along with it. We have a long way to go in this area, and I honestly never expect him to reach the developmental level that corresponds with his chronological age just because this is a huge part of Autism. My hope for him in this area is to be to the point that he can be a typical kid in having at least one good friend to eventually invite over for sleepovers. I'm trying to be realistic in this area.
Now that I have typed away for almost an hour now, I'll save the summary of his goals for his new school year for the next post! I have high hopes, but also realistic hopes, of this school year and the potential for progress.
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
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