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
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
No comments:
Post a Comment