I figured that since our blog has been pretty heavy recently, that I would share some of the humorous things that I have said to Little Bug recently. Please note, when saying them, they weren't meant to be inappropriate, however looking back, I am sure I could have handled them better.
Here goes:
"We don't bite our balls- we play with them." I said this because Little Bug was chewing on his new weighted balls. I should have said- "If you want to chew, ask for your chewie."
"Mr. Bug! We don't lick carpet in this house!" This was stated in desperation after being unable to stop him from crawling around the house and licking the carpet for days on end. I don't know what I should have said.
"We don't put our penis in things." He has discovered that he can do things with it- like point, aim, and try to put it in the drain. I don't understand. I don't really think there was a better way to put this.
"WE DON'T SCREAM IN THE GROCERY STORE!!!!" Screamed after listening to him scream Bob Bob Bob Pants- his version of Sponge Bob Square Pants- over and over again through Target and Top Foods. Of course, I look like a hypocrite and psychotic. I should have ignored him.
Now, I would like to share some of the truly *wonderful*- please note the sarcasm- mispronunciations that Little Bug has:
Fuck- truck/track
Pussy- Percy- from Thomas
Cock- Chocolate
Anal- angel as in ANGEL SHARK- have I mentioned his obsession with sharks and the fact that he now knows 10 species of sharks by name and sight?
I can say that I have been on many occasions embarrassed to the point of tears in public and worried about what people must think we do when they hear this sweet little boy say these horrible words.
Hope you laughed and turned red. Lord knows I did many times and probably still will for some of them for a long time.
Thursday, March 19, 2009
Tuesday, March 17, 2009
Lots of Tears
Poor Little Bug, there were tons of changes. On Thursday, we started brushing therapy. He seemed to really like it at first. He asked for the brushes and would brush himself on his hands and feet. Starting on Sunday evening, his love affair with the brush was over. He now screams, “No, no, no, owa, owa” whenever we try to brush. Honestly, we aren’t sure if this is being 2 and waiting to control the situation or if, to him, it is painful. We are going to take a break and check in with his OT on Thursday.
We also started packing this weekend. Nick and I decided that we wanted to pack while he was awake and around to see so that he can deal with the change. He was pretty excited while we were packing- jumping in and out of boxes, putting his stuff in, taking his stuff out, etc. Once we were done packing for the day, he suddenly began screaming and crying and yelling NO! over and over again. He fell asleep crying and saying No. It broke our hearts. We were hoping that this was a result of him being too tired or not feeling well, but yesterday when I packed a couple more boxes, he again began yelling NO and crying.
We knew that this would be hard for him- new cloths or shoes are a major problem. We just didn’t realize how hard this would be and how to make this better for him. Our therapist recommends that we drive him by the new place every day and talk about it. She also recommends that we leave a box out at all times so that he can “pack” his stuff. One note, we aren’t packing his stuff. Nick and I made the decision to leave his stuff unpacked and haul it over in the car early in the morning and have his room set up completely- therapy swing and all- before we take him over.
The last change that happened was in his routine for school. We had our first school visit yesterday and it didn’t really go well- for anyone involved. Little Bug was hyper focused and very into repetitive actions. He wouldn’t talk or look at anyone with physical and verbal prompting.
Nick and I didn’t like the class room style. It would be very easy for Little Bug to get lost. They have free play for the first 45 minutes. They then have exercise time- either outside or in the basement of the school- then circle time, lunch, and go home. A good majority of their day is free play. We asked the teacher about what experience she had with children with ASD and she admitted very little. She also believes that during free play it is truly free and if a child wants to do something for all 45 minutes, they can. The problem with this is that Little Bug would gladly play Thomas for all 45 minutes and never say anything to anyone.
Another difficulty is that there was no forced interaction between the kids or teacher. When I say that, no one entices the kids to play games together or interact. Its very much, if they want to great! If not, oh well. Also, the teacher and the aides only interact with the children if the children come up to them. This is not to say that they are sitting on their butts all day, just that there is a lack of structure and focus that Little Bug is used to and craves.
The teacher was amazingly honest. She told us that she would strongly encourage us to check out the Autism Preschool. She also told us that she doesn’t get a say even if she doesn’t feel a child is right for her program. When I asked her about the ability for a child to go more than two times a week for 2.5 hours, she stated that if she feels it is necessary she will advocate. She told us that she did this for a child this year and the school district told her that if she feels passionate about it, she can have it her way, but they will flood her class with pupils.
I felt so bad for her. She talked about time outs and breaks and how some parents feel that is too extreme. We heard her tell one child that if they did something again, she would tell their mom. She told us that for that student, it was the only recourse because they weren’t allowed to have the child take breaks or have timeouts unless they actually hurt someone.
I appreciate that her hands are tied- sometimes by lack of knowledge, sometimes by parents, and often times by the school district- but this is not the right program for Little Bug. No offense to her, but this program is set up for failure for the students and the teachers.
We have a visit to an Autism Program and we are hoping that we like this one. The thing is, we really, really wanted to like the first program too.
We also started packing this weekend. Nick and I decided that we wanted to pack while he was awake and around to see so that he can deal with the change. He was pretty excited while we were packing- jumping in and out of boxes, putting his stuff in, taking his stuff out, etc. Once we were done packing for the day, he suddenly began screaming and crying and yelling NO! over and over again. He fell asleep crying and saying No. It broke our hearts. We were hoping that this was a result of him being too tired or not feeling well, but yesterday when I packed a couple more boxes, he again began yelling NO and crying.
We knew that this would be hard for him- new cloths or shoes are a major problem. We just didn’t realize how hard this would be and how to make this better for him. Our therapist recommends that we drive him by the new place every day and talk about it. She also recommends that we leave a box out at all times so that he can “pack” his stuff. One note, we aren’t packing his stuff. Nick and I made the decision to leave his stuff unpacked and haul it over in the car early in the morning and have his room set up completely- therapy swing and all- before we take him over.
The last change that happened was in his routine for school. We had our first school visit yesterday and it didn’t really go well- for anyone involved. Little Bug was hyper focused and very into repetitive actions. He wouldn’t talk or look at anyone with physical and verbal prompting.
Nick and I didn’t like the class room style. It would be very easy for Little Bug to get lost. They have free play for the first 45 minutes. They then have exercise time- either outside or in the basement of the school- then circle time, lunch, and go home. A good majority of their day is free play. We asked the teacher about what experience she had with children with ASD and she admitted very little. She also believes that during free play it is truly free and if a child wants to do something for all 45 minutes, they can. The problem with this is that Little Bug would gladly play Thomas for all 45 minutes and never say anything to anyone.
Another difficulty is that there was no forced interaction between the kids or teacher. When I say that, no one entices the kids to play games together or interact. Its very much, if they want to great! If not, oh well. Also, the teacher and the aides only interact with the children if the children come up to them. This is not to say that they are sitting on their butts all day, just that there is a lack of structure and focus that Little Bug is used to and craves.
The teacher was amazingly honest. She told us that she would strongly encourage us to check out the Autism Preschool. She also told us that she doesn’t get a say even if she doesn’t feel a child is right for her program. When I asked her about the ability for a child to go more than two times a week for 2.5 hours, she stated that if she feels it is necessary she will advocate. She told us that she did this for a child this year and the school district told her that if she feels passionate about it, she can have it her way, but they will flood her class with pupils.
I felt so bad for her. She talked about time outs and breaks and how some parents feel that is too extreme. We heard her tell one child that if they did something again, she would tell their mom. She told us that for that student, it was the only recourse because they weren’t allowed to have the child take breaks or have timeouts unless they actually hurt someone.
I appreciate that her hands are tied- sometimes by lack of knowledge, sometimes by parents, and often times by the school district- but this is not the right program for Little Bug. No offense to her, but this program is set up for failure for the students and the teachers.
We have a visit to an Autism Program and we are hoping that we like this one. The thing is, we really, really wanted to like the first program too.
Thursday, March 12, 2009
Muuit!
That's how Little Bug says MOVE IT- as in MOVE IT MOVE IT from Madagascar. It is also what he had to say last night. We finally got the call from our landlord that we will moving into a 2 bedroom come early April. He obviously heard us talking on the phone about it and began to say MUIT MUIT!
Nick and I are extremely excited about this. I can't tell you how cramped our little family has been in our little one bedroom apartment. As with any change, I immediately think of Little Bug and how to communicate this to him and also how it will affect him.
If anyone has suggestions, please let us know. For now, we have some ideas. We are going to do a social story with pictures of him in the new place. We are also going to sharkify his room to make him more comfortable about it. By the way, when we say "his room", we really mean a room to put all of his stuff in as well as a room to have therapy in. Right now, therapy occurs in our living room on the floor because there isn't room for a set up. But there will be!
I forgot to mention that Little Bug has a new skill- two actually, but one is much cooler than the other. The cool one is looking both ways for cars. All of the sudden, he has started looking both ways and saying, "Caahs? Noooo. Caahhs. Nooo." Sometimes, when he sees a parked car, he yells, "CAAHHS!! DEE DEE- cahs!" This is really exciting and we have no idea where it came from. We haven't worked on this with him because quite honestly we weren't sure if he would understand it.
By the way, the second skill is hysterical, just not really appropriate which is the incredible ability to pull his diaper down just enough in the back to create plumber crack. He has been pulling and tugging at the back of his diaper recently and has decided that he likes rocking the plumber crack look. All I can do is smile and shake my head, because honestly, what else can you do?
Nick and I are extremely excited about this. I can't tell you how cramped our little family has been in our little one bedroom apartment. As with any change, I immediately think of Little Bug and how to communicate this to him and also how it will affect him.
If anyone has suggestions, please let us know. For now, we have some ideas. We are going to do a social story with pictures of him in the new place. We are also going to sharkify his room to make him more comfortable about it. By the way, when we say "his room", we really mean a room to put all of his stuff in as well as a room to have therapy in. Right now, therapy occurs in our living room on the floor because there isn't room for a set up. But there will be!
I forgot to mention that Little Bug has a new skill- two actually, but one is much cooler than the other. The cool one is looking both ways for cars. All of the sudden, he has started looking both ways and saying, "Caahs? Noooo. Caahhs. Nooo." Sometimes, when he sees a parked car, he yells, "CAAHHS!! DEE DEE- cahs!" This is really exciting and we have no idea where it came from. We haven't worked on this with him because quite honestly we weren't sure if he would understand it.
By the way, the second skill is hysterical, just not really appropriate which is the incredible ability to pull his diaper down just enough in the back to create plumber crack. He has been pulling and tugging at the back of his diaper recently and has decided that he likes rocking the plumber crack look. All I can do is smile and shake my head, because honestly, what else can you do?
Wednesday, March 11, 2009
IEP Saga continues
I wanted to share each step of this process, including communication between us and the school so that *hopefully* it can be useful to others and allow us to be held accountable and receive suggestions. Given the concerns that were brought to us regarding this process, I reached out to the school with the following email:
Hi XXXXXXX,
I wanted to first thank you for being flexible with the dates of Little Bug's IEP in order to ensure that we have time to review the evaluation results so that the meeting time can be maximized for all parties.
I did have a few questions that I was hoping you would be able to help me with:
1. Given that Little Bug’s IEP is tentatively scheduled for July 2, 2009, I would like to request a list of who would be available to attend the meeting. We want to ensure that he will have a detailed and specific IEP in place prior to the start of the school year. If due to lack of attendance of the interested parties that would not be achievable, we would like to move his evaluations and IEP meeting up with a goal of the first two weeks in June to ensure that we use everyone's time effectively and avoid creating duplicate work for your team.
2. Because Little Bug does have ASD, we would like to request that the district's Autism Specialist be present for both the evaluations as well as the IEP meeting.
3. Finally, I wanted to confirm that you did receive Dr. XXXXX's diagnosis of ASD for Little Bug. If not, I would be happy to fax it to you.
Thank you in advance for your help and continued cooperation.
Sincerely,
Blake
The response simply said that they would have to look into dates and they would get back to us.
Obviously, this is not how we hoped things would be. I had hoped that we wouldn’t have to jump through hoops. I would hope that every child would get a specific IEP in a timely manner without having to go through the process twice, which is what was going to happen.
As I mentioned before, its common in our school district for them to do a generic IEP in the summer and then do the process all over again come September. THAT IS THE DUMBEST AND MOST INEFFECTIVE AND INEFFICIENT WAY TO SET UP A SYSTEM I HAVE EVER HEARD OF! I mean come on- we talk about precious resources in school and a higher demand due to the higher number of children with developmental disabilities. Is this really a way to meet that demand?
But, I am left with- what am I going to do about it to change it? I have to be honest and say I don’t know how to answer that question yet, but I will.
Hi XXXXXXX,
I wanted to first thank you for being flexible with the dates of Little Bug's IEP in order to ensure that we have time to review the evaluation results so that the meeting time can be maximized for all parties.
I did have a few questions that I was hoping you would be able to help me with:
1. Given that Little Bug’s IEP is tentatively scheduled for July 2, 2009, I would like to request a list of who would be available to attend the meeting. We want to ensure that he will have a detailed and specific IEP in place prior to the start of the school year. If due to lack of attendance of the interested parties that would not be achievable, we would like to move his evaluations and IEP meeting up with a goal of the first two weeks in June to ensure that we use everyone's time effectively and avoid creating duplicate work for your team.
2. Because Little Bug does have ASD, we would like to request that the district's Autism Specialist be present for both the evaluations as well as the IEP meeting.
3. Finally, I wanted to confirm that you did receive Dr. XXXXX's diagnosis of ASD for Little Bug. If not, I would be happy to fax it to you.
Thank you in advance for your help and continued cooperation.
Sincerely,
Blake
The response simply said that they would have to look into dates and they would get back to us.
Obviously, this is not how we hoped things would be. I had hoped that we wouldn’t have to jump through hoops. I would hope that every child would get a specific IEP in a timely manner without having to go through the process twice, which is what was going to happen.
As I mentioned before, its common in our school district for them to do a generic IEP in the summer and then do the process all over again come September. THAT IS THE DUMBEST AND MOST INEFFECTIVE AND INEFFICIENT WAY TO SET UP A SYSTEM I HAVE EVER HEARD OF! I mean come on- we talk about precious resources in school and a higher demand due to the higher number of children with developmental disabilities. Is this really a way to meet that demand?
But, I am left with- what am I going to do about it to change it? I have to be honest and say I don’t know how to answer that question yet, but I will.
Tuesday, March 10, 2009
Trying not to panic
Overall, this weekend was great. Little Bug got to see fish a few times and also got some new fish books and toys from the Goodwill. We had Jessica and Peggy over and Little Bug made a lot of progress with them. He shared, talked to them, and let them touch him.
Unfortunately, there was a dark cloud hanging over our weekend. Last week, I found a bump on the back of Little Bug's head and figured it could be because he had a cold or bumped his head. I figured I would just watch it. He allowed Peggy to hold his hand and touch his head- which is huge- and Peggy noticed that the lump was still there.
Little Bug missed school yesterday so that we could go to the doctor's to have it checked out. Dr. S was incredibly concerned. Given Little Bug's history- of having a tumor on the other side of his face- he is quite concerned that another tumor has developed as Little Bug is experiencing the symptoms on the right side of his face which match the confirmed behavior of the left side- which has the tumor.
This is hard to swallow and hard to not panic. It brings back a flood of memories- when he was 2 months old, they told us they weren't sure if he had cancer, of seeing the entire left side of his face sewn back on, of 6 months of left side facial paralysis, of many nights of worry and fear.
We can't get into his surgeon for a month and a half. It is hard not to know what is going on for a month and half. I know it sounds incredibly short, but its not.
At least because of his difficulty processing pain, it doesn't hurt too much. He has only stated that his cheek hurt twice and I think that is only because we were looking at and remarking on it.
Unfortunately, there was a dark cloud hanging over our weekend. Last week, I found a bump on the back of Little Bug's head and figured it could be because he had a cold or bumped his head. I figured I would just watch it. He allowed Peggy to hold his hand and touch his head- which is huge- and Peggy noticed that the lump was still there.
Little Bug missed school yesterday so that we could go to the doctor's to have it checked out. Dr. S was incredibly concerned. Given Little Bug's history- of having a tumor on the other side of his face- he is quite concerned that another tumor has developed as Little Bug is experiencing the symptoms on the right side of his face which match the confirmed behavior of the left side- which has the tumor.
This is hard to swallow and hard to not panic. It brings back a flood of memories- when he was 2 months old, they told us they weren't sure if he had cancer, of seeing the entire left side of his face sewn back on, of 6 months of left side facial paralysis, of many nights of worry and fear.
We can't get into his surgeon for a month and a half. It is hard not to know what is going on for a month and half. I know it sounds incredibly short, but its not.
At least because of his difficulty processing pain, it doesn't hurt too much. He has only stated that his cheek hurt twice and I think that is only because we were looking at and remarking on it.
Saturday, March 7, 2009
Inside information
Nick and I have been very fortunate that in our relationships with our therapists, it often goes past just a professional level. They are willing to go above and beyond for us- come to meetings with the school on their vacation, loan us copies of their personal books, and discuss things on a personal and not just professional level. We are amazingly lucky to have them and to have the relationships with them that we do.
One benefit for both parties is exchange of information. I am known as an ASD geek who reads the articles and studies and books and they will often ask to borrow my books or forward them articles. We just found out that one of our wonderful therapists worked for the school district and she had a sit down with Nick. OH the information gained.
Little Bug’s IEP meeting is supposed to be July 2- odd time, right? Well, in our county, the teacher’s contracts only go from the first day of school to the last day of school. There is a very high likelihood that no teacher would be there for this meeting.
Our school district has and ASD Specialist that works with the schools to advocate for the parents. This person is only available upon request- which is hard to do when this isn’t a published position.
Apparently, our school district is known for putting general non specific IEPs in place for kiddos with summer birthdays and then forgetting to update them when the school year happens.
This isn’t going to fly. We are not taking all of this time out of work to visit classrooms and have meeting after meeting to do this again in September with the teacher and the complete IEP team. I am going to contact our resource and request a list of IEP team members and who will present. If no one is available- because HI its right before fourth of July- we are going to request to move this up.
I know a few posts back, I said that I would try to be amicable, but this is just lower than low. I realize that this has nothing to do with the teachers or me personally, simply the bureaucracy of the school district. My thought on that is that it shouldn’t have to take a team of 6 people on our side to get the services needed for our son. I can’t believe that the system is set up to be so conniving.
One benefit for both parties is exchange of information. I am known as an ASD geek who reads the articles and studies and books and they will often ask to borrow my books or forward them articles. We just found out that one of our wonderful therapists worked for the school district and she had a sit down with Nick. OH the information gained.
Little Bug’s IEP meeting is supposed to be July 2- odd time, right? Well, in our county, the teacher’s contracts only go from the first day of school to the last day of school. There is a very high likelihood that no teacher would be there for this meeting.
Our school district has and ASD Specialist that works with the schools to advocate for the parents. This person is only available upon request- which is hard to do when this isn’t a published position.
Apparently, our school district is known for putting general non specific IEPs in place for kiddos with summer birthdays and then forgetting to update them when the school year happens.
This isn’t going to fly. We are not taking all of this time out of work to visit classrooms and have meeting after meeting to do this again in September with the teacher and the complete IEP team. I am going to contact our resource and request a list of IEP team members and who will present. If no one is available- because HI its right before fourth of July- we are going to request to move this up.
I know a few posts back, I said that I would try to be amicable, but this is just lower than low. I realize that this has nothing to do with the teachers or me personally, simply the bureaucracy of the school district. My thought on that is that it shouldn’t have to take a team of 6 people on our side to get the services needed for our son. I can’t believe that the system is set up to be so conniving.
Wednesday, March 4, 2009
An Interview
Not long ago, I blogged about a paper that Jess wrote regarding visiting Little Bug and how it changed her carreer path. Originally, she wanted to be an ASL interpreter, however in meeting Little Bug and seeing how he used sign language as a hearing child with ASD in order to gain communication skills, she realized that what she was truly passionate about is special education.
These visits are continuing and I can only see great things coming from this relationship. For Little Bug, he gets to learn with someone outside his comfort zone. For her, she is getting to learn about the different therapies that we use with Little Bug and also about the Special Education experience of one family.
Yesterday, I received a phone call from a school newspaper wanting to know more about how we use sign language with Little Bug as well as how he and Jess established a relationship. I have to admit, I was truly surprised. That this was news worthy to a school. I remember my school paper and it never included stories like this- it was more local school drama, school sports, and dance coverage. I was astonished that there was an interest and that the school would allow this to be covered.
The interview was at times difficult for me because I wanted to ensure that the student understood that I am not an expert in ASD, sign language, or therapy. Just Little Bug. Her questions were interesting- how did they create a relationship, why would we use sign language with a hearing child, how does this benefit, why does this work for Little Bug, etc. I had to admit that I didn't have all the answers and some of my answers probably weren't what she expected.
For example, we started sign language to bide time in a way. There was a 3 to 4 month gap between realizing that Little Bug may have a delay to getting services. For us, it was maddening to know that there was a problem but nothing we could do. When a therapist suggested sign language, we jumped on it. We checked with his future therapists to make sure that it wouldn't hinder him and then just kept running. We did this because at least we were moving.
I am grateful for this opportunity. I am thankful that the school is interested in this story and wants to have it published. I am thankful for Jess and the relationship she has with Little Bug.
These visits are continuing and I can only see great things coming from this relationship. For Little Bug, he gets to learn with someone outside his comfort zone. For her, she is getting to learn about the different therapies that we use with Little Bug and also about the Special Education experience of one family.
Yesterday, I received a phone call from a school newspaper wanting to know more about how we use sign language with Little Bug as well as how he and Jess established a relationship. I have to admit, I was truly surprised. That this was news worthy to a school. I remember my school paper and it never included stories like this- it was more local school drama, school sports, and dance coverage. I was astonished that there was an interest and that the school would allow this to be covered.
The interview was at times difficult for me because I wanted to ensure that the student understood that I am not an expert in ASD, sign language, or therapy. Just Little Bug. Her questions were interesting- how did they create a relationship, why would we use sign language with a hearing child, how does this benefit, why does this work for Little Bug, etc. I had to admit that I didn't have all the answers and some of my answers probably weren't what she expected.
For example, we started sign language to bide time in a way. There was a 3 to 4 month gap between realizing that Little Bug may have a delay to getting services. For us, it was maddening to know that there was a problem but nothing we could do. When a therapist suggested sign language, we jumped on it. We checked with his future therapists to make sure that it wouldn't hinder him and then just kept running. We did this because at least we were moving.
I am grateful for this opportunity. I am thankful that the school is interested in this story and wants to have it published. I am thankful for Jess and the relationship she has with Little Bug.
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