Well I finally finished my new blog for the most part so come follow me over at www.josephsvoice.blogspot.com I may not be back on this blog for some time.
Jenn
Sunday, September 4, 2011
Wednesday, August 31, 2011
New Blog
I originally created this blog to keep everyone up to date with our family. However, it has turned more into Josephs blog about our journey with autism and ABA therapy so am in the process of creating a new blog and trying to move my last few posts to the new site, so please bare with me. If you follow me on Facebook then I am sure you know there is quite a bit I have to say about the past week. Hopefully I will have it done this week. I am wanting to get more ideas for the blog name, I like "Joseph's Voice" but am open to suggestions so let me know what do you think?
Jenn
Jenn
Sunday, August 21, 2011
Week 2 of ABA and our Visitor of the Week
This was our second week of ABA and PECS and it went amazingly smooth. Joseph did not have any more huge melt downs with the PECS and has been using them like a pro. There are I believe 6 levels until he will no longer need to use PECS for communication he is on step 1 but has done some things that are step 2 which is huge for only using them for 1 weeks time. Jason and I were talking yesterday and saying how amazed we are with the amount of progress we have seen in Joseph since starting ABA 2 weeks ago, he is imitating words daily and sometimes hourly, having less frustration, "drinking from a sippy cup independently" and overall seems so much happier even though he was pretty happy before. He used to pull us by our hands to things he wanted and stopped doing that about a month ago and he started doing it again this week. I was doubtful at first at what ABA could do to help my son but will tell you in the past week I have become a true believer, I am amazed at the progress so soon and look forward to see the changes to come in next few months. I know my son will be a completely new little boy with access to communicate with me 100 times more than today and I can't wait!!!
I feel extremely lucky that I have so many wonderful family/friends and therapists supporting us in our journey with autism along with all of the frustrations, hurt, love, excitement, and eye opening experiences we experience. I thought as things happen with therapists and different friends and family I want to do a weekly thing called the "Visitor of the Week" for someone special to us and especially special to Joseph in his journey. This week I have nominated Monika, Joseph's speech therapist. All I can say is "She Rocks!!!!" She is one person in the autism community I can turn to for knowledge, advice, or just to get something off of my chest. She has been there with us since Joseph's diagnosis and has taught me how to better communicate with my son and overall she has given us the skills we need to learn about Joseph and all of his amazement. When Monika walks in the room Joseph lights up and when she leaves he is so sad. We look forward to Thursday's when we get to see Monika. My Mom and Sister have both had the pleasure of meeting Monika and were both amazed at how well she works with Joseph and how sweet she is. This week Monika let me take some pictures of her and Joseph so thought I would introduce everyone to our "Visitor of the Week".
Earlier this week a friend asked me if I ever wondered what it is like inside the mind of an autistic child and it got me thinking because I never really thought what it truly might be like inside of Joseph's mind before. So I went to a great source my friend "Google" and found some pretty interesting information and came across one person's interpretation of the autistic person's point of view and she had a great analogy so here it goes as best I can remember. There was a lady who was in labor and refused to get an epidural, instead she chose for stadol and if you have ever taken stadol you are not quite in your own frame of mind. So at this point she is feeling pretty good but her back was really hurting so she asked her husband "Honey please rub my back it is hurting me really bad" and he replied "Yes dear" but did not rub her back as she had asked, she then asked again 2 or 3 more times and the husband replied each time "Yes dear, Yes Dear". After giving birth the wife asked the husband, why didn't you rub my back as I asked and the husband replied, "what are you talking about? You never asked me to rub your back". See this story is exactly what it is like to be an autistic person what the wife thought she was asking for was a back rub but the whole time she kept talking about the bird outside the window and needing to get up and do the dishes. The autistic mind can make you think and feel like you are saying one thing when in reality you aren't, and the same thing when we speak to an autistic child what we say to them is not always what they hear.
Wishing everyone a wonderful Week!!
Jenn
Joe Joe with Uncle Chris (my brother)
Joseph using sippy cup all by himself!!!!
Monika our speech therapist and "Visitor of the Week"
I swear she looks more like Joseph than me!
Working on Clapping
I feel extremely lucky that I have so many wonderful family/friends and therapists supporting us in our journey with autism along with all of the frustrations, hurt, love, excitement, and eye opening experiences we experience. I thought as things happen with therapists and different friends and family I want to do a weekly thing called the "Visitor of the Week" for someone special to us and especially special to Joseph in his journey. This week I have nominated Monika, Joseph's speech therapist. All I can say is "She Rocks!!!!" She is one person in the autism community I can turn to for knowledge, advice, or just to get something off of my chest. She has been there with us since Joseph's diagnosis and has taught me how to better communicate with my son and overall she has given us the skills we need to learn about Joseph and all of his amazement. When Monika walks in the room Joseph lights up and when she leaves he is so sad. We look forward to Thursday's when we get to see Monika. My Mom and Sister have both had the pleasure of meeting Monika and were both amazed at how well she works with Joseph and how sweet she is. This week Monika let me take some pictures of her and Joseph so thought I would introduce everyone to our "Visitor of the Week".
Earlier this week a friend asked me if I ever wondered what it is like inside the mind of an autistic child and it got me thinking because I never really thought what it truly might be like inside of Joseph's mind before. So I went to a great source my friend "Google" and found some pretty interesting information and came across one person's interpretation of the autistic person's point of view and she had a great analogy so here it goes as best I can remember. There was a lady who was in labor and refused to get an epidural, instead she chose for stadol and if you have ever taken stadol you are not quite in your own frame of mind. So at this point she is feeling pretty good but her back was really hurting so she asked her husband "Honey please rub my back it is hurting me really bad" and he replied "Yes dear" but did not rub her back as she had asked, she then asked again 2 or 3 more times and the husband replied each time "Yes dear, Yes Dear". After giving birth the wife asked the husband, why didn't you rub my back as I asked and the husband replied, "what are you talking about? You never asked me to rub your back". See this story is exactly what it is like to be an autistic person what the wife thought she was asking for was a back rub but the whole time she kept talking about the bird outside the window and needing to get up and do the dishes. The autistic mind can make you think and feel like you are saying one thing when in reality you aren't, and the same thing when we speak to an autistic child what we say to them is not always what they hear.
Wishing everyone a wonderful Week!!
Jenn
Joe Joe with Uncle Chris (my brother)
Joseph using sippy cup all by himself!!!!
Checking out who is in the hallway, I am guessing this is what he does at nap time because sometimes I will be walking in the hallway and see fingers ha ha
Joseph saying "Oooohhh"
Working on Clapping
Sunday, August 14, 2011
1st Week with ABA
This past week was our first week with ABA therapy and it was interesting having someone constantly in our home that is for sure. I thought I would be able to juggle it a lot better than I did, but WOW it is quite time consuming and tiresome.
I took Monday off work last week so I could be here to ensure everything went smoothly and as planned, didn't want any funny business going on. For the morning shift they came in and Joseph took so quick to the tutor Misty seen below, she was very sweet but not too sweet that Joseph would run all over her which is a good thing. She reminded me a lot of Jocie, so sweet and nurturing but not too sweet that the kids run amock. Joseph tries to flirt to get his ways some times, it is quite funny to watch just ask Jocie's friends he is always flirting with them. They mainly played with him this whole week to build a rapor with him first, you won't get too far if you come in making demands of a child without first having a relationship which I learned from a great online friend of mine this week, I would be lost without her.
Wednesday was our "hell" night and by far the worst experience we have ever had with Joseph and his tantrum if that is what you want to call it, for me it was just horrible let me explain. Since Joseph is so far behind in speech they don't expect him to learn to speak and understand over night especially since he has been going to speech therapy since May and hasn't learned too many words but has made progress just not over night progress. So they are going to be using a program called "PECS" which stands for Picture Exchange Communication System, Jason and I got the pleasure of going through training for this Wednesday night which included a tutorial type of movie that was from the early 80's that in itself was quite funny. But seriously, we did learn a lot. He will have a picture card of items we use frequently such as cheerios, toy, mom, dad, sissy, outside, juice, milk, pizza, etc. and he will have to hand us a card in exchange for the item he is wanting.
So afterwards, the supervisor and manager from Capitol Autism (they are the ones doing the ABA therapy) wanted to show us how it works and thought an easy one would be to offer Joseph fruit loops. So one lady Erin had him in her lap and the other lady (I can't remember her name too many people to remember) was sitting across from him and Erin did hand over hand with Joseph and picked up the fruit loop card and in exchange he got 2 fruit loops which he gladly ate until he realized they had a whole cup full and really didn't want the 2 fruit loops he wanted the entire cup like he is used to getting from me. (As many of you have seen on facebook my picture I posted a few weeks back of the cheerios everywhere you know I give him more than just 2 cheerios though many suggested that to fix the throwing problem.) This is when the kicking, screaming, gasping for air, snot running everywhere, in a state of paralization of some kind, and then as soon as he made eye contact with me I just about lost it. I just wanted to grab my son and get in my car and never come back, then I came back to reality and my "want" to help my son kicked in and I realized this is for his own good and to help him to communicate what he is wanting and needing and I stuck it out. The outburst went on for 40 minutes before I really couldn't handle it and I walked out to take 1 huge deep breath and wouldn't you know it I came back to see my son happy, eating his fruit loops and doing his favorite thing "drawing". He ended up giving the fruit loop card 2 more times all on his own, just amazing. The one thing that was odd to me in this whole situation is I was sitting on the floor with them just steps away and not once did Joseph get up to get help from me, it was so bizarre to me. Why didn't my son come to me, his Mom or Dad or Sissy for help? We were all right there.
The next few days the tutors that came out were told not to work with Joseph on the eating card until the supervisor has worked out all the outbursts but to work on the card for "toy" which he has caught onto really quickly, he is even doing it with me which is an awesome feeling to know when my son wants to play.
I am hoping the new PECS will help solve our new problem communicating with Joseph. About a month or so ago we first worked on the sign for "more" which was great and really helped alleviate confusion at dinner time when he wanted more vs all done but then he started using "more" for every single thing he wanted or needed or was asking for so we incorporated the sign for "eat" to help distinguish the difference well now he won't sign for "more" and now everything he signs "eat" instead. I am trying to get him to do the "more" sign and now just puts his hands straight out wanting me to do it, he is just being lazy because he is very capable of doing it. It's hard at times because I felt we were making progress with the sign language but instead we are are almost back to square 1.
So that pretty much somes up week 1 of ABA overall I think it went good, overwhelming but good. Hope everyone has an awesome week.
Jenn
"Joseph signing for Eat as well he is saying it now"
Joseph with Misty
Joe Joe with Daddy
Jocie and Joe Joe
I took Monday off work last week so I could be here to ensure everything went smoothly and as planned, didn't want any funny business going on. For the morning shift they came in and Joseph took so quick to the tutor Misty seen below, she was very sweet but not too sweet that Joseph would run all over her which is a good thing. She reminded me a lot of Jocie, so sweet and nurturing but not too sweet that the kids run amock. Joseph tries to flirt to get his ways some times, it is quite funny to watch just ask Jocie's friends he is always flirting with them. They mainly played with him this whole week to build a rapor with him first, you won't get too far if you come in making demands of a child without first having a relationship which I learned from a great online friend of mine this week, I would be lost without her.
Wednesday was our "hell" night and by far the worst experience we have ever had with Joseph and his tantrum if that is what you want to call it, for me it was just horrible let me explain. Since Joseph is so far behind in speech they don't expect him to learn to speak and understand over night especially since he has been going to speech therapy since May and hasn't learned too many words but has made progress just not over night progress. So they are going to be using a program called "PECS" which stands for Picture Exchange Communication System, Jason and I got the pleasure of going through training for this Wednesday night which included a tutorial type of movie that was from the early 80's that in itself was quite funny. But seriously, we did learn a lot. He will have a picture card of items we use frequently such as cheerios, toy, mom, dad, sissy, outside, juice, milk, pizza, etc. and he will have to hand us a card in exchange for the item he is wanting.
So afterwards, the supervisor and manager from Capitol Autism (they are the ones doing the ABA therapy) wanted to show us how it works and thought an easy one would be to offer Joseph fruit loops. So one lady Erin had him in her lap and the other lady (I can't remember her name too many people to remember) was sitting across from him and Erin did hand over hand with Joseph and picked up the fruit loop card and in exchange he got 2 fruit loops which he gladly ate until he realized they had a whole cup full and really didn't want the 2 fruit loops he wanted the entire cup like he is used to getting from me. (As many of you have seen on facebook my picture I posted a few weeks back of the cheerios everywhere you know I give him more than just 2 cheerios though many suggested that to fix the throwing problem.) This is when the kicking, screaming, gasping for air, snot running everywhere, in a state of paralization of some kind, and then as soon as he made eye contact with me I just about lost it. I just wanted to grab my son and get in my car and never come back, then I came back to reality and my "want" to help my son kicked in and I realized this is for his own good and to help him to communicate what he is wanting and needing and I stuck it out. The outburst went on for 40 minutes before I really couldn't handle it and I walked out to take 1 huge deep breath and wouldn't you know it I came back to see my son happy, eating his fruit loops and doing his favorite thing "drawing". He ended up giving the fruit loop card 2 more times all on his own, just amazing. The one thing that was odd to me in this whole situation is I was sitting on the floor with them just steps away and not once did Joseph get up to get help from me, it was so bizarre to me. Why didn't my son come to me, his Mom or Dad or Sissy for help? We were all right there.
The next few days the tutors that came out were told not to work with Joseph on the eating card until the supervisor has worked out all the outbursts but to work on the card for "toy" which he has caught onto really quickly, he is even doing it with me which is an awesome feeling to know when my son wants to play.
I am hoping the new PECS will help solve our new problem communicating with Joseph. About a month or so ago we first worked on the sign for "more" which was great and really helped alleviate confusion at dinner time when he wanted more vs all done but then he started using "more" for every single thing he wanted or needed or was asking for so we incorporated the sign for "eat" to help distinguish the difference well now he won't sign for "more" and now everything he signs "eat" instead. I am trying to get him to do the "more" sign and now just puts his hands straight out wanting me to do it, he is just being lazy because he is very capable of doing it. It's hard at times because I felt we were making progress with the sign language but instead we are are almost back to square 1.
So that pretty much somes up week 1 of ABA overall I think it went good, overwhelming but good. Hope everyone has an awesome week.
Jenn
"Joseph signing for Eat as well he is saying it now"
Joseph with Misty
Listen to the video you can hear joseph saying "oohhh" this is him saying that for the camera
Sunday, August 7, 2011
Our New Life with Autism
Wow can't believe it has been 1 year since I have written on my blog, A LOT has happened in the past year. The most significant change has been Joseph now 2 1/2 years old, was diagnosed with autism spectrum disorder this past spring. He has speech therapy every Thursday with a wonderful speech therapist Monika and tomorrow starts ABA therapy which stands for Applied Behavior Analysis. They will be in our home Monday through Friday 10am-1 and then back for some more "Rosaves Fun" 530-730pm. My privacy is officially over. On a serious note, I wouldn't change this for anything because I asked for this help, I am willing to do whatever and make any sacrifice needed to ensure my son has all opportunities.
To take you back a little bit to give you some history on Joseph and how he came to be diagnosed with Autism and maybe just maybe, one more person will understand where our family is today compared to a year ago, as there are many friends and family that I know just don't completely or even slightly understand our day to day life and what we are going through. I hear these kinds of statements frequently and it is hard to hear and frankly not sure I can take one more person saying this to us.
Saying "Did you know that Einstein didn’t talk until he was four? Did you know that he didn’t form complete sentences until he was nine? And he was fine!" Or my all time favorite line "my child didn't talk until he/she was 3" or of course there is "Joseph doesn't look like he is autistic" Really? Really? I never knew there was a look for autism!!
So backing up to Winter 2010 Joseph was a thriving almost 2 year old he didn't talk much but said a few words "Momma, Sissy and Dada" and things were going great. In March 2011 I noticed Joseph stopped saying all words except the occassional "Momma" and he wouldn't respond when you called his name and couldn't understand a simple instruction such as "Go get the ball" which would be right next to him. So we took him to the doctor who then referred him to Alta Regional Center to look into further testing and speech and occupation therapy. Alta Regional came to the house and met with us and Joseph to see where he was for his age and referred him to UC Davis' Mind Institute for further testing since he showed quite a few signs of Autism.
In May 2011 I took Joseph to the Mind Institute and he was evaluated for around 4 hours and at the end of the evaluation the doctor informed me Joseph does have Autism as well as Mixed developmental delay which means in Joseph's case his neurological (brain) is at his current age but all other areas he is very, very far behind. He was measured to be around the 6-9 month level at 27 months old. This was one of the hardest days of my life, my heart was broken to say the least, as I thought of all the things my son wouldn't be able to do and what his life would be like in 20 years and nothing was good that I could see. Then I did my research and read read read and read some more and talked with other parents of autistic children and learned my perception of what my sons future held was completely wrong!! He would become whatever his heart desired and I made a promise to myself at that very moment to do what ever it took to ensure my son could reach his full potential. So as I wrote above if that means my privacy gone and strangers in my home every day to help my son succeed then that is the sacrifice I am willing to make.
Fast forward to today and Joseph is thriving with therapy and our life constantly revolves around teaching him a new skill to help him communicate with us. You see Joseph hasn't been able to communicate with us his needs and wants, this obviously would cause frustration and he would scream and cry and it would be a process of elimination to figure out what he needed. Could you imagine having a fully functioning brain as you do now reading this and wanting to tell someone right next to you something you are thinking, feeling, wanting, or needing and don't know how to tell someone? That's what life is like for Joseph every second of every day for him. For about the past few weeks he stopped saying "Momma" all together which was so hard as a Mom you long for the day your child say's Momma and to have it taken away is even harder, I am happy to report he is saying it again and full force along with his newest word "No" and he doesn't just say "No" he say's it with a typical 2 year old attitude, I just "LOVE IT".
With speech therapy we have had to work on teaching him to understand us before we could teach him to talk so it's not as simple as telling him "say Go" though he has learned to say "Go" after a long period of a game of "Ready, Set, Go". Every day with Joseph is one long therapy session, don't worry it is all through games and playing with him, it's not him sitting down and me saying "ok joseph lets learn how to say ball today, say ball" it doesn't work like that, he is 2 years old not 8. We are teaching him sign language to help him gain access to his needs and wants, when he wants a door open he has to knock, when he wants more he signs "more" and this past week he learned how to sign to "eat" which is huge. Oh and most important he has learned to point, that is right my son did not point before a month ago which many people I am sure did not know.
I hope some of me telling this and the details of what we have gone through has helped someone understand us a little better, it is by no means to hurt anyone's feelings but do know that when I hear statements of doubting his diagnosis that hurts me more than words can say. I am not asking anyone to confirm his diagnosis I don't need that but what I do need is my family and friends to support us in all that we go through every single day.
Lastly, if anyone ever wants to come over and see what is involved with Joseph's therapy sessions our door is always open and I would love the opportunity to share in the learning experience. I never thought in a million years that one of my children would be going through all of this and need all of this help but I do know that God chose me to be Joseph's Mom and Joseph's Voice and I feel honored and I hope that us going through this I will be able to help someone else with my experience.
Jenn
(P.S. You didn't think I could just post without a few pictures now did you?)
To take you back a little bit to give you some history on Joseph and how he came to be diagnosed with Autism and maybe just maybe, one more person will understand where our family is today compared to a year ago, as there are many friends and family that I know just don't completely or even slightly understand our day to day life and what we are going through. I hear these kinds of statements frequently and it is hard to hear and frankly not sure I can take one more person saying this to us.
Saying "Did you know that Einstein didn’t talk until he was four? Did you know that he didn’t form complete sentences until he was nine? And he was fine!" Or my all time favorite line "my child didn't talk until he/she was 3" or of course there is "Joseph doesn't look like he is autistic" Really? Really? I never knew there was a look for autism!!
So backing up to Winter 2010 Joseph was a thriving almost 2 year old he didn't talk much but said a few words "Momma, Sissy and Dada" and things were going great. In March 2011 I noticed Joseph stopped saying all words except the occassional "Momma" and he wouldn't respond when you called his name and couldn't understand a simple instruction such as "Go get the ball" which would be right next to him. So we took him to the doctor who then referred him to Alta Regional Center to look into further testing and speech and occupation therapy. Alta Regional came to the house and met with us and Joseph to see where he was for his age and referred him to UC Davis' Mind Institute for further testing since he showed quite a few signs of Autism.
In May 2011 I took Joseph to the Mind Institute and he was evaluated for around 4 hours and at the end of the evaluation the doctor informed me Joseph does have Autism as well as Mixed developmental delay which means in Joseph's case his neurological (brain) is at his current age but all other areas he is very, very far behind. He was measured to be around the 6-9 month level at 27 months old. This was one of the hardest days of my life, my heart was broken to say the least, as I thought of all the things my son wouldn't be able to do and what his life would be like in 20 years and nothing was good that I could see. Then I did my research and read read read and read some more and talked with other parents of autistic children and learned my perception of what my sons future held was completely wrong!! He would become whatever his heart desired and I made a promise to myself at that very moment to do what ever it took to ensure my son could reach his full potential. So as I wrote above if that means my privacy gone and strangers in my home every day to help my son succeed then that is the sacrifice I am willing to make.
Fast forward to today and Joseph is thriving with therapy and our life constantly revolves around teaching him a new skill to help him communicate with us. You see Joseph hasn't been able to communicate with us his needs and wants, this obviously would cause frustration and he would scream and cry and it would be a process of elimination to figure out what he needed. Could you imagine having a fully functioning brain as you do now reading this and wanting to tell someone right next to you something you are thinking, feeling, wanting, or needing and don't know how to tell someone? That's what life is like for Joseph every second of every day for him. For about the past few weeks he stopped saying "Momma" all together which was so hard as a Mom you long for the day your child say's Momma and to have it taken away is even harder, I am happy to report he is saying it again and full force along with his newest word "No" and he doesn't just say "No" he say's it with a typical 2 year old attitude, I just "LOVE IT".
With speech therapy we have had to work on teaching him to understand us before we could teach him to talk so it's not as simple as telling him "say Go" though he has learned to say "Go" after a long period of a game of "Ready, Set, Go". Every day with Joseph is one long therapy session, don't worry it is all through games and playing with him, it's not him sitting down and me saying "ok joseph lets learn how to say ball today, say ball" it doesn't work like that, he is 2 years old not 8. We are teaching him sign language to help him gain access to his needs and wants, when he wants a door open he has to knock, when he wants more he signs "more" and this past week he learned how to sign to "eat" which is huge. Oh and most important he has learned to point, that is right my son did not point before a month ago which many people I am sure did not know.
I hope some of me telling this and the details of what we have gone through has helped someone understand us a little better, it is by no means to hurt anyone's feelings but do know that when I hear statements of doubting his diagnosis that hurts me more than words can say. I am not asking anyone to confirm his diagnosis I don't need that but what I do need is my family and friends to support us in all that we go through every single day.
Lastly, if anyone ever wants to come over and see what is involved with Joseph's therapy sessions our door is always open and I would love the opportunity to share in the learning experience. I never thought in a million years that one of my children would be going through all of this and need all of this help but I do know that God chose me to be Joseph's Mom and Joseph's Voice and I feel honored and I hope that us going through this I will be able to help someone else with my experience.
Jenn
(P.S. You didn't think I could just post without a few pictures now did you?)
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