The holidays are upon us...which means family get togethers, crowded shopping places, freezing weather, breaks from school, and so many other things.
While so many families look forward to this time, I don't exactly dread it, but I do have so much more to consider now. While pregnant with Brycen, I yearned to be able to show him off to extended family which is what we did those first couple years (of course when possible around our work schedules and moving a few hours away). I was proud of my adorable little boy...and of course I am still proud, but I know that "showing" him off is different now.
We have so much to consider with him over these couple months. He gets very overwhelmed with too many people, therefore we will probably never be able to go to my extended family get togethers again and I have to be careful about what stores and when I take him there because of the crowds and time to wait in line that occurs this time of year.
It's also a transition to get him to start wearing warmer clothes and because he is so active and sweats profusely, we can't dress him in sweaters and sweatshirts. He can't tell us when he is too cold, so we need to watch for other signs. This time of year is so common for illness and unfortunately he can't inform us when he doesn't feel well until it actually happens. I'm not even sure if he feels the same uncomfortable sick feelings we do.
The long breaks from school can really throw him off. Even just having the one extra day on a long weekend means he usually puts up a fight to get ready for school on the following Monday. His whole routine is interrupted with the holidays...more traveling, more people around him, different food, eating at different places, away from his toys and familiar environment. We have to take much of this into consideration when deciding whether to stay overnight at family homes anymore. Now that we only live an hour from our parent's homes, that makes this so much easier to just come home to stay the night.
Too many people and too much to do in one day can overwhelm him so much...therefore, we also do not want to plan family Christmas' on the same day. We need to them to be separated so that he can have a break from the pressure of all of it. To us, we love to eat a variety of good food, listen to holiday music, visit with family we don't see very often, open presents and see what each other gave and received...but to him, that is sensory overload.
I have attached a link to the Autism Speaks page that gives tips on how to prepare and get through the holidays.
http://www.autismspeaks.org/inthenews/holiday_tips.php
I don't ever want anyone to think that our lack of participation is because we don't want to be there, but these things are not worth the stress put on him. I do not let his Autism dictate many things such as what food is put in front of him or other things that I just can't think of right now. He is not on a special diet, therefore I expect him to eat the same food we do and what is put in front of him...and hope that someday he will understand to be grateful for that blessing of food.
But I do need to let the Autism dictate the above things because the repercussions that can come from the sensory overload is far too great to even want to imagine. We choose our battles with our children and this is one battle that I choose to try to prevent as much as possible...just hope all will understand the reasons behind our decisions.
Wednesday, November 24, 2010
Tuesday, November 23, 2010
What a scare!
It's been a rocky day in our house! As soon as Brycen woke up this morning, he just wasn't happy. He spotted the train t-shirt in his drawer and "insisted" on wearing it...it's short sleeve and it's absolutely freezing today. I gave up the battle after a couple minutes and figured it just wasn't that big of a deal. Then he wasn't happy with what I gave him for breakfast, but when I lifted him up to the cupboard to pick what he wanted he wouldn't point to anything else. Then when it was time to get shoes/coat on for school, he sat down on the floor and screamed. I tried his picture schedule which has worked well in the past when this has happened, but to no avail. He screamed and fought me the entire time while getting his shoes, coat, and hat on. Then he threw his backpack at me so I just turned and started walking out the door. After running after me, crying and screaming, he finally decided to put it on and get in the car.
12:20 rolls around and I am standing by the window waiting for the school van to pull up. I'm waiting and waiting... at 12:30, I start to get this horrible feeling in my stomach. I should back up here and let you know that I also heard police sirens around noon and though that is not a common thing in our small town, I didn't really think anything of it until Brycen was 10 minutes late coming home. I began fearing the worst...car accident. I didn't know what to do! Then the phone rang and it was my mom and before she even got the words out, I knew it was about Brycen. There was a bomb threat at his school and all the kids were bussed to churches nearby for evacuation while the school was searched and luckily the local news had said which church the elementary kids went to. So after calling the church to confirm, I loaded up Aubree in the car and waited in line for almost 15 minutes before I could get to him.
At this point, I'm sure all parents can empathize with the fear of not knowing where your child is and of course of the scare of a threat of harm to the school where your child is supposed to be safe. My fear went even deeper because I know how Brycen reacts to stressful situations, change in routine...and I also knew he recently developed a fear of school buses. About a year ago, his old school had practiced an evacuation drill like all are required to. That's all great and fine, but when dealing with special education students with sensory issues, you need to take precautions to make sure they are taken care of and not distressed anymore than necessary. Well, despite the teachers knowing how Brycen (and many with Autism) have a huge fear of loud noises...the backdoor of the bus that Brycen was getting into was left open so the loud siren-like noise was going off and of course, Brycen freaked out.
Fast forward to today...as soon as I heard they had bussed the kids to the churches, I knew there was a problem. Yes he did freak out when they put him on the bus and eventually was able to calm down once the bus started driving away. BUT he did ok...he got through and he seemed somewhat happy when I picked him up. A little nervous with the crowd of people, hiding his head, and making unhappy noises, but not too bad.
I guess I don't know what the point of this post really is and how it really pertains to his autism. I guess the fact that the situation could have been easier for him if past personnel had taken into account his sensory issues. Brycen has enough fears right now, and being that a school bus typically is part of a child's school years, it does upset me that they triggered a new fear in him that could have been prevented. Just like when someone suggested that I cut his hair in the bathtub. He loves taking baths, but hates getting his haircut. Why on earth would I want to put him through the trauma of a haircut in a place he enjoys?! I don't want him to start hating baths then. There is just so much to think about and be cautious with in children on the spectrum...and it never goes as planned, but at least we can try to make life's happenings as easy as possible.
12:20 rolls around and I am standing by the window waiting for the school van to pull up. I'm waiting and waiting... at 12:30, I start to get this horrible feeling in my stomach. I should back up here and let you know that I also heard police sirens around noon and though that is not a common thing in our small town, I didn't really think anything of it until Brycen was 10 minutes late coming home. I began fearing the worst...car accident. I didn't know what to do! Then the phone rang and it was my mom and before she even got the words out, I knew it was about Brycen. There was a bomb threat at his school and all the kids were bussed to churches nearby for evacuation while the school was searched and luckily the local news had said which church the elementary kids went to. So after calling the church to confirm, I loaded up Aubree in the car and waited in line for almost 15 minutes before I could get to him.
At this point, I'm sure all parents can empathize with the fear of not knowing where your child is and of course of the scare of a threat of harm to the school where your child is supposed to be safe. My fear went even deeper because I know how Brycen reacts to stressful situations, change in routine...and I also knew he recently developed a fear of school buses. About a year ago, his old school had practiced an evacuation drill like all are required to. That's all great and fine, but when dealing with special education students with sensory issues, you need to take precautions to make sure they are taken care of and not distressed anymore than necessary. Well, despite the teachers knowing how Brycen (and many with Autism) have a huge fear of loud noises...the backdoor of the bus that Brycen was getting into was left open so the loud siren-like noise was going off and of course, Brycen freaked out.
Fast forward to today...as soon as I heard they had bussed the kids to the churches, I knew there was a problem. Yes he did freak out when they put him on the bus and eventually was able to calm down once the bus started driving away. BUT he did ok...he got through and he seemed somewhat happy when I picked him up. A little nervous with the crowd of people, hiding his head, and making unhappy noises, but not too bad.
I guess I don't know what the point of this post really is and how it really pertains to his autism. I guess the fact that the situation could have been easier for him if past personnel had taken into account his sensory issues. Brycen has enough fears right now, and being that a school bus typically is part of a child's school years, it does upset me that they triggered a new fear in him that could have been prevented. Just like when someone suggested that I cut his hair in the bathtub. He loves taking baths, but hates getting his haircut. Why on earth would I want to put him through the trauma of a haircut in a place he enjoys?! I don't want him to start hating baths then. There is just so much to think about and be cautious with in children on the spectrum...and it never goes as planned, but at least we can try to make life's happenings as easy as possible.
Monday, November 22, 2010
Speech & OT update!
I absolutely love our new therapists over here! They've decided to approach Brycen's speech and OT together on the days he has school so as not to overwhelm him so much...they call it co-treat for these 1/2 hours.
Do you remember me sharing about a year or so ago that Brycen was having difficulty with understanding the PECS pictures? I was having to take my camera around and take pictures of all the places we typically go, his various toys, and clothing items, etc. He has come so far in this over the last year that all he uses now are PECS pictures and he actually can identify them the first time he sees them!
PECS pictures are what we will be using in our future Go Talk at home so it's necessary for him to understand them. Today at his therapy appt, he did great at using the device appropriately and was very enthusiastic to tell them "more" with the appropriate picture! He also responded well to transitions and they definitely kept him busy!
Here is a summary of what a co-treat session looks like as I'm sure many people that read this blog have never participated in speech or OT sessions:
First of all, they ask him to choose one activity on the Go-Talk. They typically have at least one of the 3 pictures as a non-preferred activity. He chose to "swing" today, so the OT therapist put him in the swing and went side to side, back to front. Every 30-45 seconds, they would stop and ask Brycen what he wanted. He would then push "swing" again...and the Speech therapist would then request him to push "more" first. If he doesn't do it, she then does hand-over-hand with him and offers praise over and over. They do this series multiple times. Then they push the "all done" button to let him know swinging is over. They ask him to go to the table where they show him new pictures and he chose "play-doh" today. The OT then worked with him on fine motor skills by putting little army guys in the play-doh for him to get out. Praise, praise for each one. Then they ask him what he wants to do next...and he pushed "play-doh" again, but the speech therapist encourages to push the "more" also. They do this multiple times. Then they go back to a different sensory activity which of course Brycen chose to swing again. After second time swinging, they went back to table and worked on making a turkey craft with him. This worked not only on his choice of colors, using scissors, or glue but also worked on him recognizing the PECS for these while the OT helped him with these fine motor skills. She focused a lot on his grip today with the colors.
I love these sessions because they keep him busy, follow a great sensory diet for the 1/2 hr of back and forth, not too much of one thing, but encouraging communication with the Go-Talk and also working on transitions. They give me such a great example of words to use with him, how to praise him, and how to keep him transitioning without becoming upset. I'm not sure how else I would learn these things if I didn't have the therapists to teach me how. So thankful that insurance will pay for these sessions!
Do you remember me sharing about a year or so ago that Brycen was having difficulty with understanding the PECS pictures? I was having to take my camera around and take pictures of all the places we typically go, his various toys, and clothing items, etc. He has come so far in this over the last year that all he uses now are PECS pictures and he actually can identify them the first time he sees them!
PECS pictures are what we will be using in our future Go Talk at home so it's necessary for him to understand them. Today at his therapy appt, he did great at using the device appropriately and was very enthusiastic to tell them "more" with the appropriate picture! He also responded well to transitions and they definitely kept him busy!
Here is a summary of what a co-treat session looks like as I'm sure many people that read this blog have never participated in speech or OT sessions:
First of all, they ask him to choose one activity on the Go-Talk. They typically have at least one of the 3 pictures as a non-preferred activity. He chose to "swing" today, so the OT therapist put him in the swing and went side to side, back to front. Every 30-45 seconds, they would stop and ask Brycen what he wanted. He would then push "swing" again...and the Speech therapist would then request him to push "more" first. If he doesn't do it, she then does hand-over-hand with him and offers praise over and over. They do this series multiple times. Then they push the "all done" button to let him know swinging is over. They ask him to go to the table where they show him new pictures and he chose "play-doh" today. The OT then worked with him on fine motor skills by putting little army guys in the play-doh for him to get out. Praise, praise for each one. Then they ask him what he wants to do next...and he pushed "play-doh" again, but the speech therapist encourages to push the "more" also. They do this multiple times. Then they go back to a different sensory activity which of course Brycen chose to swing again. After second time swinging, they went back to table and worked on making a turkey craft with him. This worked not only on his choice of colors, using scissors, or glue but also worked on him recognizing the PECS for these while the OT helped him with these fine motor skills. She focused a lot on his grip today with the colors.
I love these sessions because they keep him busy, follow a great sensory diet for the 1/2 hr of back and forth, not too much of one thing, but encouraging communication with the Go-Talk and also working on transitions. They give me such a great example of words to use with him, how to praise him, and how to keep him transitioning without becoming upset. I'm not sure how else I would learn these things if I didn't have the therapists to teach me how. So thankful that insurance will pay for these sessions!
Friday, November 19, 2010
Go-Talk
Brycen is doing great with the Go Talk communication device during speech therapy so the SLP agrees it's time to go ahead and order him one for at home!
For those that don't know much about communication devices, they can range from around a hundred dollars all the way up to over $10,000. It really just depends on the developmental level of the child/adult that needs one and the purpose of it. In Brycen's situation, we have discussed how easily distracted he is and how he gets frustrated very fast. Our goal with a device is to get him to make choices, communicate these choices, and to hopefully encourage single word (possibly stringing 2 words) verbalization. Therefore after reviewing many different products, the SLP and I agreed that the Go Talk 9 seems to be a good fit. I have attached a link below that will explain what it is and shows a picture of it.
The Go Talk is a low tech device that is usually considered a starter device and is very common with children around Brycen's age and level. My concern with anything simpler would be he would outgrow it too fast and we would be requesting for Medicaid to pay for another one in a year or so. My concern with anything more high-tech is that he gets too distracted with too many things in front of him.
When we first tried the Go Talk 9 at therapy, the only pages they had were 9 pictures to choose from. The first time they tried to work with him on it, he didn't want anything to do with it more than likely because it was just too much for him to grasp. The second week of therapy, they covered up a couple pictures so there was less to overwhelm him, and he did do better with that, but he thought it was just a game and wanted to push every button over and over and then would giggle. It had to be taken away from him at that point because we do not want him thinking this is a toy to play around with. He needs to learn the purpose of this device and only be allowed to use it for that purpose...it's the same way with all the other consistency we have in his life to ensure we are setting him up for success.
Once we actually get the device, we will only use 3 of the picture boxes and 2 of the smaller boxes but we know eventually we will need to give him more options so that is why we went with the 9 level over the smaller ones. This device will easily fit into the diaper bag when we leave the house and will be easy for him to turn on and off, as well as easy to reprogram as needed.
Our goal is for each page to have 3 options of activities, food choices, or maybe a 3 step schedule. The other two smaller boxes will have the pictures for "more" and "all done," to encourage him to string together two pictures. The SLP said he was able to string together the "more" and an activity picture multiple times on his own at the session on Monday after only showing him a few times! I'm excited to see what will happen once we are consistently using the device and what the progress will be!
http://www.attainmentcompany.com/product.php?productid=16147&cat=337&page=1
For those that don't know much about communication devices, they can range from around a hundred dollars all the way up to over $10,000. It really just depends on the developmental level of the child/adult that needs one and the purpose of it. In Brycen's situation, we have discussed how easily distracted he is and how he gets frustrated very fast. Our goal with a device is to get him to make choices, communicate these choices, and to hopefully encourage single word (possibly stringing 2 words) verbalization. Therefore after reviewing many different products, the SLP and I agreed that the Go Talk 9 seems to be a good fit. I have attached a link below that will explain what it is and shows a picture of it.
The Go Talk is a low tech device that is usually considered a starter device and is very common with children around Brycen's age and level. My concern with anything simpler would be he would outgrow it too fast and we would be requesting for Medicaid to pay for another one in a year or so. My concern with anything more high-tech is that he gets too distracted with too many things in front of him.
When we first tried the Go Talk 9 at therapy, the only pages they had were 9 pictures to choose from. The first time they tried to work with him on it, he didn't want anything to do with it more than likely because it was just too much for him to grasp. The second week of therapy, they covered up a couple pictures so there was less to overwhelm him, and he did do better with that, but he thought it was just a game and wanted to push every button over and over and then would giggle. It had to be taken away from him at that point because we do not want him thinking this is a toy to play around with. He needs to learn the purpose of this device and only be allowed to use it for that purpose...it's the same way with all the other consistency we have in his life to ensure we are setting him up for success.
Once we actually get the device, we will only use 3 of the picture boxes and 2 of the smaller boxes but we know eventually we will need to give him more options so that is why we went with the 9 level over the smaller ones. This device will easily fit into the diaper bag when we leave the house and will be easy for him to turn on and off, as well as easy to reprogram as needed.
Our goal is for each page to have 3 options of activities, food choices, or maybe a 3 step schedule. The other two smaller boxes will have the pictures for "more" and "all done," to encourage him to string together two pictures. The SLP said he was able to string together the "more" and an activity picture multiple times on his own at the session on Monday after only showing him a few times! I'm excited to see what will happen once we are consistently using the device and what the progress will be!
http://www.attainmentcompany.com/product.php?productid=16147&cat=337&page=1
Sunday, November 14, 2010
Imaginative Play
As most of you know, Brycen has major deficits in "imaginative play" just like the majority of children on the spectrum. The way he plays with toys is very methodical and stimulating to him and we have to be constantly teaching him to play appropriately with them. In addition to that, he does not have the skills to know how to play pretend, so when Aubree wants to play with her kitchen stuff and hands him a cup to pretend to drink...Brycen just throws that cup across the room. Same thing with baby dolls, dress up, stuffed animals, etc. He prefers to just line all of them up (see picture below) and stare at them with his head on the floor to ensure they are lined up according to his standards. Building with blocks is either building up or in a line...he doesn't understand that he could build a house or other object with them.
Yes, that is Brycen (sorry about the dark and blurry picture, but I only had moments to get this snapped without him noticing!) feeding one of Aubree's baby dolls! No prompts, nobody to imitate in the room....just Brycen all by himself holding a baby in one hand and a bottle in the other. AMAZING! Of course the moment was very short-lived and when I asked him about it a couple minutes later, he chose to pick up the baby and fling it across the room.
What a great glimpse into those little things he is slowly storing away in his brain but we just don't get to see that often!
Recently, the teacher did share with me that he has frequently been picking up a play phone at school and saying something similar to "hello?" in imitation of the other kids. At home, he has also done this a couple times. A little progress!
Yes, that is Brycen (sorry about the dark and blurry picture, but I only had moments to get this snapped without him noticing!) feeding one of Aubree's baby dolls! No prompts, nobody to imitate in the room....just Brycen all by himself holding a baby in one hand and a bottle in the other. AMAZING! Of course the moment was very short-lived and when I asked him about it a couple minutes later, he chose to pick up the baby and fling it across the room.
What a great glimpse into those little things he is slowly storing away in his brain but we just don't get to see that often!
Thursday, November 11, 2010
One step, two step, three step and so on
Brycen has always been behind in his gross motor skills. He did not crawl until 12 1/2 months and did not walk until 17 1/2 months. When I addressed this with the doctor at his 1 yr well child visit, they did not have concern because at that time, he was meeting all of his other milestones. He was saying quite a few single words, stacking blocks, making eye contact, pulling himself up, eating finger foods, etc. The doctor specifically said that sometimes kids just don't crawl and if he reaches 18 months without walking, we would look at starting him in Physical Therapy. About 2 1/2 weeks before he was 18 months, he started walking and it was a joyous moment! I was 3-4 months pregnant with Aubree and I was fretting about having to carry a newborn and a toddler around when she was born if he didn't start by then. 
Here we are, a few years later and he is still behind in gross motor skills. He does not run as fast as other 4 yr olds, and cannot turn a corner while running which I guess is something he is supposed to be able to do. He cannot pedal a big-wheel, has trouble with walking up and down stairs without holding onto something, as well as he is very slow at learning various obstacles at the playgrounds. The picture to the right was taken when he was about 3 and shows he needed and still needs a lot of guidance while trying to climb up certain areas of playgrounds.
But after explaining all of these areas we are still working on with him...I am so happy to share his accomplishment from yesterday! I watched as he tackled the 10 or so cement steps that led to the entrance to the therapy clinic. While going up stairs, he will either hold onto the railing or walk up them "Spiderman style" with balancing himself on his hands in front. If he is upright and holding on, he still brings his feet together on each step before putting one foot on the next one. I was absolutely amazed to see him be able to walk up those steps without holding on and without needing to use his hands for balance. It was slow...but it was FANTASTIC!! He was so proud of himself and stood at the top with a huge smile on his face. He knew what he did...and I know he has been working so hard on this!
Another moment that I will not take for granted!!
Tuesday, November 9, 2010
Wilbarger Brushing Technique
The new Occupational Therapist introduced the brushing technique to us last week and gave us instructions and a brush to take home and start using with Brycen. The goal of this technique is to help him with his sensory cravings, as well as to encourage restful sleep and eventually decrease aggression/help him work through agitation and frustration. I've been trying to find a good website to add to this post, but I just can't find one that I like that really explains the technique well enough. Wilbarger Brushing has been around for a long time and though it does not have science backing it up, many parents agree it has helped their child on the spectrum in so many ways.
My philosopy is it only takes a few minutes each time and doesn't cost us any money or require us to travel and put him out of his comfort zone, so why not?!
The technique uses a therapy brush with lightweight and soft bristles. This is the condensed version of what the technique is like: you start with firm pressure up and down one arm, move to the back up and down, and over to other arm. Then you move to each leg up and down, and then the bottoms of the feet. It is best to do on bare skin, but of course over the clothes is ok too if the child will accept it better that way. The protocol calls for doing it at least every 1 1/2-2 hours all day long.
At first, Brycen cried and threw the brush the first few times. Then he slowly would allow us to brush one small area (he actually wants to brush his head and stomach with it himself, though the technique says these areas are supposed to be off limits). After 5 days of doing it (I showed my mom how to use it over the weekend when we were gone), he now runs to us when we suggest getting the brush. He holds still and it seems like he is really craving it now. The drastic change from Thursday's reaction is phenomenal! I read that if the child doesn't respond like this within a week, then it's not the right therapy for them.
I have shared over and over how aggression is a huge issue with Brycen. In the long run, we would like him to be able to "tell" us he needs the brush when he is starting to have those feelings of frustration and anger, so we can help him work through those feelings before it goes to far. I have read that this technique decreases a lot of the tantrums that come along with classic/non-verbal children with autism. I have also read it takes A LOT of dedication to ensure the "sensory diet" is consistent day in and day out, which means everybody that cares for him has to be on board. My goal right now is to complete the technique once in the morning before school, have school do it about mid-morning, then shortly after he gets home during rest time, then again late afternoon, after dinner, and then again at bedtime. So far, so good and it was so great to go back to the OT yesterday and share his progress with her...and then to hear that he tolerated it so well for her during his session too!
Monday, November 8, 2010
Brycen's Goals for This Waiver Year
Since Brycen is on the ID Waiver, this qualifies him for an extra service called Supported Community Living (SCL). This is where we set goals up for the year, and staff work specifically on these with him during these shifts. SCL goals can only be implemented if the child shows deficits in areas that the typical child his/her age have mastered and cannot be oriented around things they learn in school. Therefore, this service is not designated as a "break" to the caregivers like respite is for. This service adds another person(s) in on teaching the child to accomplish certain skills. It's not just the staff that need to be working on these things to show progress, but the parents need to be dedicated also to working on the same exact things. My philosopy on this is: Consistency=progress...Inconsistency=waste of time and the state's money.
So, this year I have chosen to go about the SCL in a different way and through a different programming called Consumer Choice Option. I'm not going to go into detail with how this differs from an agency, but let's just say there are different options and CCO is the one we have chosen. My mom, Shirley, is going to be his SCL provider just like she is his respite provider. I firmly believe that parents should be picky about who their SCL provider will be because it obviously has to be someone that understands where the deficits are, is willing to learn how the child needs to be worked with, is dedicated to the consistency of the program, and of course has the best interest of the child at heart. My mom meets all of these areas, so she was the obvious decision now that we live closer to her.
Brycen really needs to work on many different areas to catch up with his peers, so it was really hard to focus on the areas we really wanted to see the most progress. Below are the 4 goal areas we are choosing to work on this year:
1. Brycen will make a choice with the aid of picture cards if needed (and hopefully a communication device soon!). Brycen will then follow through with his choices in an age appropriate manner with assistance from the staff (this includes taking turns, playing appropriately with toys, attention span, etc).
2. Brycen will have appropriate behavior in the community and will decrease the interventions needed by staff throughout the year.
3. Brycen will maintain his safety in the community by obtaining a form of ID (bracelet that will explain he is non-verbal and have contact information on it for us), will keep ID with him while in community, present his ID information when asked to with staff assistance, and identify people he can "ask" for help if needed while in the community. (This will probably be an ongoing goal to work towards, but you can never start this too early!).
4. Brycen will increase his independence with hygiene and dressing/undressing. He will wash his body/hair with first hand-over-hand assistance and decreasing to verbal prompts/modeling by the end of the year while bathing. He will complete 1 step of dressing (an article of clothing=one step) and then move onto Step 1 and Step 2, then so on as he accomplishes each. We will also be using picture cards to encourage him to pick out a shirt/pants/socks/pajamas by himself for each dressing.
As we were thinking about these goals and "testing" him in these areas, we noticed he has actually come a long way with the dressing and undressing. He is also willing to help more in the bathtub. We hope that as he can become more independent in certain areas, his frustration level will decrease and in return, the aggression will hopefully decrease. Right now, the aggression is our biggest concern and we think a lot of that stems from him not being able to communicate things and also his OCD behavior. If something isn't right, he thinks hitting will solve it or get his point across. As we increase his independence, this gives him more control over his environment and will hopefully teach him other ways to go about communicating things to us.
So, this year I have chosen to go about the SCL in a different way and through a different programming called Consumer Choice Option. I'm not going to go into detail with how this differs from an agency, but let's just say there are different options and CCO is the one we have chosen. My mom, Shirley, is going to be his SCL provider just like she is his respite provider. I firmly believe that parents should be picky about who their SCL provider will be because it obviously has to be someone that understands where the deficits are, is willing to learn how the child needs to be worked with, is dedicated to the consistency of the program, and of course has the best interest of the child at heart. My mom meets all of these areas, so she was the obvious decision now that we live closer to her.
Brycen really needs to work on many different areas to catch up with his peers, so it was really hard to focus on the areas we really wanted to see the most progress. Below are the 4 goal areas we are choosing to work on this year:
1. Brycen will make a choice with the aid of picture cards if needed (and hopefully a communication device soon!). Brycen will then follow through with his choices in an age appropriate manner with assistance from the staff (this includes taking turns, playing appropriately with toys, attention span, etc).
2. Brycen will have appropriate behavior in the community and will decrease the interventions needed by staff throughout the year.
3. Brycen will maintain his safety in the community by obtaining a form of ID (bracelet that will explain he is non-verbal and have contact information on it for us), will keep ID with him while in community, present his ID information when asked to with staff assistance, and identify people he can "ask" for help if needed while in the community. (This will probably be an ongoing goal to work towards, but you can never start this too early!).
4. Brycen will increase his independence with hygiene and dressing/undressing. He will wash his body/hair with first hand-over-hand assistance and decreasing to verbal prompts/modeling by the end of the year while bathing. He will complete 1 step of dressing (an article of clothing=one step) and then move onto Step 1 and Step 2, then so on as he accomplishes each. We will also be using picture cards to encourage him to pick out a shirt/pants/socks/pajamas by himself for each dressing.
As we were thinking about these goals and "testing" him in these areas, we noticed he has actually come a long way with the dressing and undressing. He is also willing to help more in the bathtub. We hope that as he can become more independent in certain areas, his frustration level will decrease and in return, the aggression will hopefully decrease. Right now, the aggression is our biggest concern and we think a lot of that stems from him not being able to communicate things and also his OCD behavior. If something isn't right, he thinks hitting will solve it or get his point across. As we increase his independence, this gives him more control over his environment and will hopefully teach him other ways to go about communicating things to us.
And there was....SLEEP!!
Yes, you read that correctly...entire nights of sleep have finally decided to visit our house!!
The script we got for Brycen did not work. It actually seemed to make it worse in some ways, so after a week and half of that, we decided to wean him off. Another Autism-mommy had suggested a combo of drowsy Benadryl and Melatonin which is what she uses for her young son for his sleep disturbances. At the same time, Brycen was battling a runny-nose, sneezing, coughing, feverish cold too, as well as his eczema has really started to pop up again so thought the Benadryl could possibly help with those things too.
It worked on the FIRST NIGHT...and has for 7 out of 8 nights since he has been taking it! The one night he woke up, he just came into the room and after Mike took him back to his bed, he was fast asleep within 15 minutes. For those who are just catching up on Brycen and his sleep, he has never slept this many nights in a row in his entire life...almost 4 1/2 years! While most babies begin to sleep consistently through the night at a few months old, we have never had that luxury with him. Though it was easier when he was younger as we could get him back to sleep in 1/2 to 1 hour then...as he got older, he would be awake up to 3 1/2 hours in the middle of the night. It only took a few nights of this when I realized my alarm going off in the morning was not near as annoying as it had always been.
The hope was that we would see a decrease in his aggression and an increase in his attention span with full nights of sleep, but unfortunately we have not noticed a difference in that. I am planning to still talk to the doctor about a day-time med to help in these areas, but as for sleep, we are just going to keep going like this. I have read that some children develop a tolerance to the sleepy side effects of the Benadryl, so I guess we will cross that bridge if it comes.
Until then, sleep on, Timmer household! We won't take this for granted!
The script we got for Brycen did not work. It actually seemed to make it worse in some ways, so after a week and half of that, we decided to wean him off. Another Autism-mommy had suggested a combo of drowsy Benadryl and Melatonin which is what she uses for her young son for his sleep disturbances. At the same time, Brycen was battling a runny-nose, sneezing, coughing, feverish cold too, as well as his eczema has really started to pop up again so thought the Benadryl could possibly help with those things too.
It worked on the FIRST NIGHT...and has for 7 out of 8 nights since he has been taking it! The one night he woke up, he just came into the room and after Mike took him back to his bed, he was fast asleep within 15 minutes. For those who are just catching up on Brycen and his sleep, he has never slept this many nights in a row in his entire life...almost 4 1/2 years! While most babies begin to sleep consistently through the night at a few months old, we have never had that luxury with him. Though it was easier when he was younger as we could get him back to sleep in 1/2 to 1 hour then...as he got older, he would be awake up to 3 1/2 hours in the middle of the night. It only took a few nights of this when I realized my alarm going off in the morning was not near as annoying as it had always been.
The hope was that we would see a decrease in his aggression and an increase in his attention span with full nights of sleep, but unfortunately we have not noticed a difference in that. I am planning to still talk to the doctor about a day-time med to help in these areas, but as for sleep, we are just going to keep going like this. I have read that some children develop a tolerance to the sleepy side effects of the Benadryl, so I guess we will cross that bridge if it comes.
Until then, sleep on, Timmer household! We won't take this for granted!
Wednesday, November 3, 2010
Something that seems so simple...
I wish I could understand why some parents of children on the spectrum say they are never frustrated. Please enlighten me on what is so different...I know our children are affected in a variety of areas and at different degrees, but you can't tell me that you are able to stay patient through every single transition and every little thing that should be so simple.
So, here is my frustration for today...
We have been so lucky with Brycen being overall healthy. I don't want to jinx anything, but in almost 4 1/2 yrs, he has only had to battle one ear infection and one pink eye infection, a handful of colds, and a couple bouts with flu. Very, very lucky!
As soon as Brycen stepped out of the school van, I saw how flushed his face was but he frequently has a flushed face because of how active he is. Of course he was still excited to see me, ran into the house like normal, threw his coat on the floor, took off his shoes and put them by the door, and immediately ran to the window to look outside. The same old routine every day when he comes home. So when I bent down to give him a kiss, I could feel how warm he was.
Since some of you do not know Brycen very well, I feel I should explain that Brycen does not exhibit symptoms of not feeling well like other kids his age. He won't just lay around if not feeling well, obviously can't talk to us and tell us if there is something wrong, he continues his active and sensory-seeking things like every other day. When he had the flu last year, he was running around like normal, all of a sudden stopped to vomit (and cry because he of course did not understand what was happening and didn't want us near him to help him), and then went back to normal activities. This happened at least two more times that day, with NO WARNING each time.
So, back to today...common sense parenting tells me to take his temperature and give tylenol. Brycen was having no part in the ear thermometer and I know for a fact he would never allow me to put a thermometer in his mouth or under his arm. He ran from me, screamed, covered his ears and eyes...I attempted to demonstrate what it was and that it didn't hurt, but of course I knew it wouldn't matter. Luckily, he loves taking Tylenol so that wasn't a fight. I know we are going to need to invest in yet another type of thermometer (probably the kind that you just point at their forehead) so here is another example of money we have to put out there for items that are special to Brycen's needs. I don't even know the cost of these, but I will find out soon I guess.
Something that should be so simple just isn't for Brycen. A bloody nose and mouth on Monday afternoon after falling on the floor was another example from this week. He obviously hurt because he was crying, but wouldn't let us look at his nose or mouth, or hold a washcloth up to catch the blood. He wouldn't allow us to comfort him (probably the HARDEST thing we have ever had to encounter is our own child not wanting our love and comfort when he is upset!) so our only choice was to let him run around, wiping the blood on his shirt, and just following him to make sure it wasn't worse than it looked.
Each time we encounter a task that is so simple like switching to winter coats and a hat, we have to be patient to get through it...or like today and on Monday, we just step back and breathe, realizing it's just different.
It's just a whole lot of different.
So, here is my frustration for today...
We have been so lucky with Brycen being overall healthy. I don't want to jinx anything, but in almost 4 1/2 yrs, he has only had to battle one ear infection and one pink eye infection, a handful of colds, and a couple bouts with flu. Very, very lucky!
As soon as Brycen stepped out of the school van, I saw how flushed his face was but he frequently has a flushed face because of how active he is. Of course he was still excited to see me, ran into the house like normal, threw his coat on the floor, took off his shoes and put them by the door, and immediately ran to the window to look outside. The same old routine every day when he comes home. So when I bent down to give him a kiss, I could feel how warm he was.
Since some of you do not know Brycen very well, I feel I should explain that Brycen does not exhibit symptoms of not feeling well like other kids his age. He won't just lay around if not feeling well, obviously can't talk to us and tell us if there is something wrong, he continues his active and sensory-seeking things like every other day. When he had the flu last year, he was running around like normal, all of a sudden stopped to vomit (and cry because he of course did not understand what was happening and didn't want us near him to help him), and then went back to normal activities. This happened at least two more times that day, with NO WARNING each time.
So, back to today...common sense parenting tells me to take his temperature and give tylenol. Brycen was having no part in the ear thermometer and I know for a fact he would never allow me to put a thermometer in his mouth or under his arm. He ran from me, screamed, covered his ears and eyes...I attempted to demonstrate what it was and that it didn't hurt, but of course I knew it wouldn't matter. Luckily, he loves taking Tylenol so that wasn't a fight. I know we are going to need to invest in yet another type of thermometer (probably the kind that you just point at their forehead) so here is another example of money we have to put out there for items that are special to Brycen's needs. I don't even know the cost of these, but I will find out soon I guess.
Something that should be so simple just isn't for Brycen. A bloody nose and mouth on Monday afternoon after falling on the floor was another example from this week. He obviously hurt because he was crying, but wouldn't let us look at his nose or mouth, or hold a washcloth up to catch the blood. He wouldn't allow us to comfort him (probably the HARDEST thing we have ever had to encounter is our own child not wanting our love and comfort when he is upset!) so our only choice was to let him run around, wiping the blood on his shirt, and just following him to make sure it wasn't worse than it looked.
Each time we encounter a task that is so simple like switching to winter coats and a hat, we have to be patient to get through it...or like today and on Monday, we just step back and breathe, realizing it's just different.
It's just a whole lot of different.
Tuesday, November 2, 2010
The Mason Alert- Please read!
I am attaching a link to the Mason Alert petition. I cannot stress enough how important a system like this is...not just for children/adults with Autism, but all developmental and cognitive disabilities.
As parents of Brycen, we have seen firsthand how he has no comprehension of danger. We can talk it till we are blue in the face, but that will not make a difference to Brycen. While I don't believe Brycen has a fascination with water, I do know he has a fascination with trains and railroad tracks. We know that in the near future, we will be needing an alarm system on our doors and windows also to keep him safe. We already know there are few people in our life that understand the constant supervision he needs and this is why we are very, very picky on who we allow to babysit him. We have no choice but to be picky, because in one second he could disappear like this child did.
There were also situations about a month ago with two children in Iowa that drowned in ponds. The one I recall the best was in northern Iowa and the child was special needs and living with wonderful, stable foster parents. The child escaped from the home and a short time later, they found him in one of those decorative ponds in a neighbor's backyard...he was dead. I read about all of these laws going into effect that people are required to put a fence around their backyard pools, but even these ponds in yards with just a foot of water can be just as harmful to a child that can't comprehend the danger of water.
Please, please support this important alert! Yes it is going to take some tax money to put this in place, but I would rather have a few extra dollars taken out of my check every payperiod than continue to read devastating stories like this.
http://www.theautismnews.com/2010/09/07/the-mason-alert-petition/
As parents of Brycen, we have seen firsthand how he has no comprehension of danger. We can talk it till we are blue in the face, but that will not make a difference to Brycen. While I don't believe Brycen has a fascination with water, I do know he has a fascination with trains and railroad tracks. We know that in the near future, we will be needing an alarm system on our doors and windows also to keep him safe. We already know there are few people in our life that understand the constant supervision he needs and this is why we are very, very picky on who we allow to babysit him. We have no choice but to be picky, because in one second he could disappear like this child did.
There were also situations about a month ago with two children in Iowa that drowned in ponds. The one I recall the best was in northern Iowa and the child was special needs and living with wonderful, stable foster parents. The child escaped from the home and a short time later, they found him in one of those decorative ponds in a neighbor's backyard...he was dead. I read about all of these laws going into effect that people are required to put a fence around their backyard pools, but even these ponds in yards with just a foot of water can be just as harmful to a child that can't comprehend the danger of water.
Please, please support this important alert! Yes it is going to take some tax money to put this in place, but I would rather have a few extra dollars taken out of my check every payperiod than continue to read devastating stories like this.
http://www.theautismnews.com/2010/09/07/the-mason-alert-petition/
Monday, November 1, 2010
A new Halloween tradition in the Timmer household
Halloween...crowds, going to strange houses, expectations to communicate with people, masks and other scary things...just not going to work for Brycen.
We had taken Brycen at the end of September to the store to pick out a costume (knowing Thomas the train is what he would be), but of course they had scary masks and such in the aisle that freaked him out right away and Mike had to take him back to the car before tantrum set in. Nevermind picking it out, I just found the Thomas one and paid the $25 for it (an outrageous amount to me for a costume for a child!). I wanted him to be happy and I knew it would be challenging to get him to wear anything different so figured it being Thomas was a great encouragement/bribery tool.
So, a few weeks ago I wanted to take the kids to the campground where my parents were that weekend to participate in their trick-or-treating. I figured I had my parents as back-up, our close friends were going to be there with their kids that Brycen knows, and he loves to be outside so what better environment. The day before, I "practiced" with him by giving both kids their candy bucket and breaking out the costumes. He was definitely giddy over Thomas, but it took a lot of convincing to get him to wear it (it just sits over the shoulders, not tight or anything). I felt so victorious in the fact he actually wore it for about 5 minutes! HUGE step!
So the next afternoon, we head to the campground and when I get the costume out, he of course wants NOTHING to do with it. UGH...I was so mad I spent all this money on something to have it just sit on the table. So, off we go down the road in just his clothes with me carrying the costume. It took a few campers before he realized this was kinda cool...and he kept peering into his bucket to check out his growing pile of candy. Candy is definitely a way to Brycen's heart! About 1/4 of the way around the circle, I slowly slipped the costume over one arm first and then eventually over his head. VICTORY! He was so worried about his candy that he didn't even notice!
Above you can see Brycen and his buddy, Aiden, walking together at the campground in their Thomas costumes!
So, then came the decision of do we pressure this again on Halloween night. We decided it wasn't worth it in this crazy town of Strawberry Point. It was chilly, there were very few houses on our street with their lights on, so we decided we would teach Brycen a different tradition on Halloween night. We decided to stock up on candy and show the kids how nice it is to be the ones to give it out, not always get the candy. They had a blast watching out the big window for trick-or-treaters and would yell all the way to the door. Brycen even put some candy in bags and said "bye" with prompts from me! The only time he refused to come near the door was when someone had a mask on, which of course makes sense.
Here's to a new tradition in our house that lets our kids participate in this holiday but still makes sure that Brycen is comfortable and not overwhelmed! An adaption to our life once again, but we are all for whatever makes our children happy and teaches them the simple act of giving!
We had taken Brycen at the end of September to the store to pick out a costume (knowing Thomas the train is what he would be), but of course they had scary masks and such in the aisle that freaked him out right away and Mike had to take him back to the car before tantrum set in. Nevermind picking it out, I just found the Thomas one and paid the $25 for it (an outrageous amount to me for a costume for a child!). I wanted him to be happy and I knew it would be challenging to get him to wear anything different so figured it being Thomas was a great encouragement/bribery tool.
So, a few weeks ago I wanted to take the kids to the campground where my parents were that weekend to participate in their trick-or-treating. I figured I had my parents as back-up, our close friends were going to be there with their kids that Brycen knows, and he loves to be outside so what better environment. The day before, I "practiced" with him by giving both kids their candy bucket and breaking out the costumes. He was definitely giddy over Thomas, but it took a lot of convincing to get him to wear it (it just sits over the shoulders, not tight or anything). I felt so victorious in the fact he actually wore it for about 5 minutes! HUGE step!
So the next afternoon, we head to the campground and when I get the costume out, he of course wants NOTHING to do with it. UGH...I was so mad I spent all this money on something to have it just sit on the table. So, off we go down the road in just his clothes with me carrying the costume. It took a few campers before he realized this was kinda cool...and he kept peering into his bucket to check out his growing pile of candy. Candy is definitely a way to Brycen's heart! About 1/4 of the way around the circle, I slowly slipped the costume over one arm first and then eventually over his head. VICTORY! He was so worried about his candy that he didn't even notice!
Above you can see Brycen and his buddy, Aiden, walking together at the campground in their Thomas costumes!
So, then came the decision of do we pressure this again on Halloween night. We decided it wasn't worth it in this crazy town of Strawberry Point. It was chilly, there were very few houses on our street with their lights on, so we decided we would teach Brycen a different tradition on Halloween night. We decided to stock up on candy and show the kids how nice it is to be the ones to give it out, not always get the candy. They had a blast watching out the big window for trick-or-treaters and would yell all the way to the door. Brycen even put some candy in bags and said "bye" with prompts from me! The only time he refused to come near the door was when someone had a mask on, which of course makes sense.
Here's to a new tradition in our house that lets our kids participate in this holiday but still makes sure that Brycen is comfortable and not overwhelmed! An adaption to our life once again, but we are all for whatever makes our children happy and teaches them the simple act of giving!
Insurance and their control
I never in a million years guessed it would be this hard to start Brycen's speech and OT again after moving! I knew we had to complete a new evaluation here, but I guess I figured we could start immediately and he would be out of therapy two weeks at the most since we are transferring to the exact same services here.
Guess I was wrong! It's amazing how much insurance can rule your life in these instances. Yes, we have Medicaid as a back up for speech and OT, but the hospital won't act on that until it has been run through our primary insurance first. We are one of the lucky ones in that our private insurance covers a decent chunk of the first 20 appointments of the year for both types of therapy, and then Medicaid sees both therapies as a necessary treatment for Autism so they will then pick up the rest of the tab. There is no way we could afford to pay $125+ per hour of therapy that he needs out of pocket.
Anyway, so for the last three weeks, we have had to just sit back and wait for BCBS to "pre-authorize" a service that he was already receiving before at a different hospital. Transitioning Brycen to a new therapy place with new people is hard enough as it is (hence the interesting evaulation we had earlier in October where he gave the therapists a clear picture of the not-so-good days), but then to keep him out of it for over a month is just outrageous! If it wasn't for the fact he was in school right now and for us actually knowing how to encourage ways for him to get out his energy through a partial sensory diet or how to encourage sign language and choices, he could have definitely regressed in these areas in a month's time. This is just another reason why it is so important for parents to be actively involved in their child's therapy because you just never know who or what will have control over that time and how long it can be on hiatus.
So, the good news is the pre-auth came in the mail over the weekend and the new clinic called me today to set up his first OT and speech with them on Thursday. The bad news...starting a new routine with him and transitioning him to this is probably not going to be easy:(
Guess I was wrong! It's amazing how much insurance can rule your life in these instances. Yes, we have Medicaid as a back up for speech and OT, but the hospital won't act on that until it has been run through our primary insurance first. We are one of the lucky ones in that our private insurance covers a decent chunk of the first 20 appointments of the year for both types of therapy, and then Medicaid sees both therapies as a necessary treatment for Autism so they will then pick up the rest of the tab. There is no way we could afford to pay $125+ per hour of therapy that he needs out of pocket.
Anyway, so for the last three weeks, we have had to just sit back and wait for BCBS to "pre-authorize" a service that he was already receiving before at a different hospital. Transitioning Brycen to a new therapy place with new people is hard enough as it is (hence the interesting evaulation we had earlier in October where he gave the therapists a clear picture of the not-so-good days), but then to keep him out of it for over a month is just outrageous! If it wasn't for the fact he was in school right now and for us actually knowing how to encourage ways for him to get out his energy through a partial sensory diet or how to encourage sign language and choices, he could have definitely regressed in these areas in a month's time. This is just another reason why it is so important for parents to be actively involved in their child's therapy because you just never know who or what will have control over that time and how long it can be on hiatus.
So, the good news is the pre-auth came in the mail over the weekend and the new clinic called me today to set up his first OT and speech with them on Thursday. The bad news...starting a new routine with him and transitioning him to this is probably not going to be easy:(
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