** I apologize for the previous errors in this post, I didn't realize I hit Post button and I was out of town and unable to fix it.***
Yesterday was part two of the evaluation also our "no matter what they say ... our last evaluation for a while". S was her typical self at the meeting as I watched it. She did her best in all areas and in her communication she tried her hardest, she was talking in a baby voice (her uncomfortable) the whole time. It's like nails on a chalkboard voice to me.
This is basically how the conclusion of the meeting went -
"While it's interesting.... There is definitely something that is not right, but I'm not sure what it is." (We have heard this at all the evaluations and from her therapist)
- I understand this, this is what everyone says.. go on...
"While it's her memory, she truly seems like she can't remember what you said a second ago. It's not like she says"I don't know" because she is trying to get out of it. She really doesn't know. Sometime prompting her helps and sometimes it doesn't. She is delayed in her skills both in her communication, social and coping. However, I don't believe it's Autism"
- Okay when you say Autism you are speaking of Aspergers as well, correct?
"Yes"
-Then let me ask you this. Isn't no coping, social and lack of communication skills Aspergerian (is that a word) like qualities? You are telling me that my daughter can learn these with the right thearpies. But can't anyone learn these with therapies? And if so isn't that skill always a learned quality?
"I get what your saying. All I can say is that there are characteristics that are Autistic like but there are other things that don't line up or she doesn't have. Like she doesn't have an obsession with anything. Be glad she's not Autistic she can really learn these skills and application. It won't be a life long thing. However, I'm not sure if her memory is a neurological or delay. Let's take it six weeks at a time."
-What about all her sensory issues? Her overwhelming, her sense of smell that bothers her, her bouncing and clapping when excited or anxious, Her anxiety with school, What are those? Those are not delays.
"Well I'm not really sure but I'm thinking she will grow out of it."
REALLY?! Our conclusion:
S is going to start behavorial therapies once a week with both daddy and I joining her. It's the same therapies that you give with Autism. We will take it six weeks at time. We will have a journal to keep about what works and what doesn't while we try implementing different techniques. They already gave me different helpful ideas like when we hit a wall with S and we need her to understand something. If she isn't understanding it at her level drop down to an even younger age level. Let her do her baby talk but don't let her flap.
All I can say is that we will try this for now. Am I concerned about her brain? Yes Am I worried that it will be lifelong? Yes. We all have to take it one day at time. I do still feel it's more but I will take this for now. At least they see that I am not crazy, that there is something wrong. IT's interesting though that we are acting like it's autism with the same therapies but yet they say it's not.
Friday, September 30, 2011
Tuesday, September 27, 2011
How did it go?
S evaluation was last week and it's taken me sometime to write about it. Mostly because to tell you the truth I haven't really wanted to share about it. I know that's not fair that I mention it but don't say anything. Well.. all in all I guess it went good. It went better then the one at C.A.R.E.S.
I was in the room during this testing and they were talking to her about her friends and things she likes to do. S's conversation is never a full conversation she would answer the questions and then kind of look away. She talked about friends that I never heard of and when asked does she play with any friends outside of school her answer was no. If you saw previous posts that is not true. I do take S on play dates to friends houses and one family we are really close too and go out of town with a lot plus they come over all the time. I told the lady after that S's answers were not correct.
They talked about S's rages and anxiety in the morning. Something about her castles came up. S NEVER PLAYS with her castles!! She never plays with ANYTHING!!! I told the doctor that makes no sense even when S has time to play she doesn't like those things. She just wakes up in a funk.
The doctor also gave S a number of IQ testing and questions. She said that even though S's response seem strange they were age appropriate for her. Also that she notices that S needs a lot of prompting to find the right answer. It's not that she doesn't know it, it's just that she's not as quick as others. She believes that S isn't necessarily Autistic but that she is delayed.
I told her I understand this however all the other intricacies don't line up. The fact that S has this thing with smells, fits, rages, understanding of feelings, bouncing, she does this thing with her nose all the time, she gets overwhelmed when we go places (FORGET TARGET!!), etc.... I can go on and on. What about those? How can that be part of her delay?
The doctor said that she still needs to look over the questions and answers plus give her more testing before the diagnosis is given. She did state that either way she believes that S needs a behavioral plan and therapies.
Basically they are saying that S can learn these skills and apply them with the right therapies. But my question is, isn't that the same for Aspergers???? - No Social, No Coping, lacking cognitive but EVERYONE can learn and apply with time. It just doesn't come naturally it will always be a learned action.
I'm confused..... The hubby and I don't all the way agree with the doctor but decided to drop it for two years or so then re-approcah it when S is older if we feel that she still needs it and maybe her actions aren't just passed by due to her age.
I was in the room during this testing and they were talking to her about her friends and things she likes to do. S's conversation is never a full conversation she would answer the questions and then kind of look away. She talked about friends that I never heard of and when asked does she play with any friends outside of school her answer was no. If you saw previous posts that is not true. I do take S on play dates to friends houses and one family we are really close too and go out of town with a lot plus they come over all the time. I told the lady after that S's answers were not correct.
They talked about S's rages and anxiety in the morning. Something about her castles came up. S NEVER PLAYS with her castles!! She never plays with ANYTHING!!! I told the doctor that makes no sense even when S has time to play she doesn't like those things. She just wakes up in a funk.
The doctor also gave S a number of IQ testing and questions. She said that even though S's response seem strange they were age appropriate for her. Also that she notices that S needs a lot of prompting to find the right answer. It's not that she doesn't know it, it's just that she's not as quick as others. She believes that S isn't necessarily Autistic but that she is delayed.
I told her I understand this however all the other intricacies don't line up. The fact that S has this thing with smells, fits, rages, understanding of feelings, bouncing, she does this thing with her nose all the time, she gets overwhelmed when we go places (FORGET TARGET!!), etc.... I can go on and on. What about those? How can that be part of her delay?
The doctor said that she still needs to look over the questions and answers plus give her more testing before the diagnosis is given. She did state that either way she believes that S needs a behavioral plan and therapies.
Basically they are saying that S can learn these skills and apply them with the right therapies. But my question is, isn't that the same for Aspergers???? - No Social, No Coping, lacking cognitive but EVERYONE can learn and apply with time. It just doesn't come naturally it will always be a learned action.
I'm confused..... The hubby and I don't all the way agree with the doctor but decided to drop it for two years or so then re-approcah it when S is older if we feel that she still needs it and maybe her actions aren't just passed by due to her age.
Wednesday, September 21, 2011
YEAH for J
Yesterday was J's turn to shine. I am so proud of him! His conference was amazing. I was worried that he wasn't doing well. He is in a Spanish Immersion school. At his school they speak 90% Spanish and 10% english. English is introduced more and more as he gets older in school. He is in 2nd grade is fluent in Spanish and English (first language). He is a little above a second grader's reading level in Spanish and right where he should be for English reading.
J is the big brother out of all the children. I know that it must be hard for him. He is becoming older and is no longer this little boy that lays around with action figures and cars. He has a hard time trying to communicate and play with S. He loves to tease all of them as a big brother does. He is very sensitive and sweet.
At home J makes it seem like he has no idea what he is reading or what to do. He gets frustrated in his writing and math. And as I have said before it's like pulling teeth to get him to do his homework. Also his handwriting is sooo... bad. While you can imagine what I was thinking going into a school conference. I was prepared for the worst. I WAS SO SURPRISED!!
The first thing that teacher commented on was "J has such beautiful handwriting." I laughed and said no not my child. She showed me examples of his handwriting and it was gorgeous! I wanted to take it home and show everyone but they had to keep it in his files. He has jumped two book levels in class and is a little above in his reading skills. His math is right on point and their is no concern. He is non-disruptive and very sweet. I AM SO PROUD!!
I informed her about S and that if she ever sees J a little upset or not focusing to let me know. The one thing that SUCKED about all this was that J had gotten in trouble earlier in the day and was grounded with no TV, DSI, WII and had to stay in his room for the evening. So even though I was so so proud, I still had to follow on my word.
The grounding incident had to do with S. Later in the evening we spent time reading a children's book on understanding Autism. He asked some great questions and commented on certain things that he has noticed about S. THis morning he was a changed boy... he was speaking so sweetly to her wanting to help her, trying to guide her a little in her morning anxiety.
VERY PROUD of you J!! You are doing so well at school!! And your a great big brother!!!
J is the big brother out of all the children. I know that it must be hard for him. He is becoming older and is no longer this little boy that lays around with action figures and cars. He has a hard time trying to communicate and play with S. He loves to tease all of them as a big brother does. He is very sensitive and sweet.
At home J makes it seem like he has no idea what he is reading or what to do. He gets frustrated in his writing and math. And as I have said before it's like pulling teeth to get him to do his homework. Also his handwriting is sooo... bad. While you can imagine what I was thinking going into a school conference. I was prepared for the worst. I WAS SO SURPRISED!!
The first thing that teacher commented on was "J has such beautiful handwriting." I laughed and said no not my child. She showed me examples of his handwriting and it was gorgeous! I wanted to take it home and show everyone but they had to keep it in his files. He has jumped two book levels in class and is a little above in his reading skills. His math is right on point and their is no concern. He is non-disruptive and very sweet. I AM SO PROUD!!
I informed her about S and that if she ever sees J a little upset or not focusing to let me know. The one thing that SUCKED about all this was that J had gotten in trouble earlier in the day and was grounded with no TV, DSI, WII and had to stay in his room for the evening. So even though I was so so proud, I still had to follow on my word.
The grounding incident had to do with S. Later in the evening we spent time reading a children's book on understanding Autism. He asked some great questions and commented on certain things that he has noticed about S. THis morning he was a changed boy... he was speaking so sweetly to her wanting to help her, trying to guide her a little in her morning anxiety.
VERY PROUD of you J!! You are doing so well at school!! And your a great big brother!!!
Tuesday, September 20, 2011
Differences not Negative
As parents I believe that we all want an amazing life for our children. We desire hopes, dreams, aspirations of happiness and amazing life for them. I confess I hold these dreams for each one of my children as different as they are from one another. What they don't understand is that you have these dreams for them and why.
This week is the start of Report Card/Conference week. I have had S's so far and I have J's today. I didn't really go into S's with certain thoughts because I keep in contact with her teacher so much that I know what is going on constantly. On top of having her conference yesterday we are also preparing and filling out TONS of paperwork for another evaluation regarding her Aspergers.
I know that in order to get a diagnosis it's not the positive that I have to focus on but what some would deem the negative. I don't like to say negative, I would rather use the word differences. Yes my daughter does not fit in the typical stereotype of a six year old girl she has her differences.
During her conference yesterday with her teacher the some of her differences were stated such as - Respecting Others and Following Classroom rules. S has a tendency to wander when she wants and wash her hands a lot on top of touching fellow classmates often (to often). I told her she might be walking away (wandering) because she needs to re-foucs. She is blessed to have a WONDERFUL teacher who suggested making break cards for S so that she doesn't have to use words for it but if she feels she needs one she can hand her teacher the card and go to the library or computers. I was thrilled to hear the teacher take this initiative and suggestion regarding S.
Tomorrow is our first out of two EVALUATIONS for S regarding her Aspergers. I am glad to say that Children's Hospital does very well with their testing. We have been through this before and to say that I am tired of paperwork and marking answers to millions of questions is an understatement. Since all I have been focused on lately is what my child does wrong I would like to say a few things of what my child does right.
1. She is the best HELPER in the world, and loves to do it.
2. She will give you as much cuddles as you want.
3. She can read at almost a full grade above her class.
4. She is also REALLY, REALLY good with her math skills. Since she can memorize a lot.
5. She's a great soccer player.
6. She wears her heart on her sleeve.
7. She has an amazing laugh.
8. One day she is going to make a great mother, since this is what she tends to mimic a lot.
9. She has really nice handwriting.
10. She is reliable.
11. MY MOST Favorit thing: SHE HAS THE BEST SMILE.
This week is the start of Report Card/Conference week. I have had S's so far and I have J's today. I didn't really go into S's with certain thoughts because I keep in contact with her teacher so much that I know what is going on constantly. On top of having her conference yesterday we are also preparing and filling out TONS of paperwork for another evaluation regarding her Aspergers.
I know that in order to get a diagnosis it's not the positive that I have to focus on but what some would deem the negative. I don't like to say negative, I would rather use the word differences. Yes my daughter does not fit in the typical stereotype of a six year old girl she has her differences.
During her conference yesterday with her teacher the some of her differences were stated such as - Respecting Others and Following Classroom rules. S has a tendency to wander when she wants and wash her hands a lot on top of touching fellow classmates often (to often). I told her she might be walking away (wandering) because she needs to re-foucs. She is blessed to have a WONDERFUL teacher who suggested making break cards for S so that she doesn't have to use words for it but if she feels she needs one she can hand her teacher the card and go to the library or computers. I was thrilled to hear the teacher take this initiative and suggestion regarding S.
Tomorrow is our first out of two EVALUATIONS for S regarding her Aspergers. I am glad to say that Children's Hospital does very well with their testing. We have been through this before and to say that I am tired of paperwork and marking answers to millions of questions is an understatement. Since all I have been focused on lately is what my child does wrong I would like to say a few things of what my child does right.
1. She is the best HELPER in the world, and loves to do it.
2. She will give you as much cuddles as you want.
3. She can read at almost a full grade above her class.
4. She is also REALLY, REALLY good with her math skills. Since she can memorize a lot.
5. She's a great soccer player.
6. She wears her heart on her sleeve.
7. She has an amazing laugh.
8. One day she is going to make a great mother, since this is what she tends to mimic a lot.
9. She has really nice handwriting.
10. She is reliable.
11. MY MOST Favorit thing: SHE HAS THE BEST SMILE.
Sunday, September 18, 2011
Weekend Trip
This weekend we took a Family trip with friends to Big Bear, CA. It was BEAUTIFUL!!! Lately I have not been the most positive and happiest person. To be honest I was not that thrilled for this trip. My husband, kids and friends were ES-TACTIC. So relentlessly I packed up the family, shopped for food, loaded the care and we all headed to the hills.
We were very blessed to stay in this great time share with friends and EVERYONE had a blast. I have four children so too say my life is relaxing would mean my children are non-existent. No matter where we are the requests for food, whining, etc... still come. What am I to do? I can't sit and pout, whine, or get annoyed (as I do sometimes). I have to just go with it. I am blessed that overall my children LOVE each other, are so happy to have one another and have a constant play mate. These are a few of things that I remembered, and relized this weekend. I only have my children for so long, so deal with it and enjoy it. They did not choose to have 3 other siblings to each other they should'nt be punished in my attittude. I am happy that we are able to take them places with four. Yes it's challenging with K still young and still my cling-on and S's need for comfort when we go places but there are smiles that are on the faces and that is what matters. At the end of the night and during the day it was beyond words to watch them laugh with their friends and us adults enjoyed talking, playing board games, and having fun. It was a very much needed time.
During the ride to Big Bear I managed to finish reading a Young Adult novel called Mockingbird by Kathryn Erksine. It is about a young lady who has Aspergers. Her brother's death causes her to search out Closure which she cannot quite understand. The book is done through her point of view with her thinking a lot in her head about how people talk, interact, and what they do. It gave me an interesting look into my daughters perspective on life. The way she sees things and lead to a few topics on things that we have noticed and are trying to understand with S. Super easy read for ages 9-12.
We were very blessed to stay in this great time share with friends and EVERYONE had a blast. I have four children so too say my life is relaxing would mean my children are non-existent. No matter where we are the requests for food, whining, etc... still come. What am I to do? I can't sit and pout, whine, or get annoyed (as I do sometimes). I have to just go with it. I am blessed that overall my children LOVE each other, are so happy to have one another and have a constant play mate. These are a few of things that I remembered, and relized this weekend. I only have my children for so long, so deal with it and enjoy it. They did not choose to have 3 other siblings to each other they should'nt be punished in my attittude. I am happy that we are able to take them places with four. Yes it's challenging with K still young and still my cling-on and S's need for comfort when we go places but there are smiles that are on the faces and that is what matters. At the end of the night and during the day it was beyond words to watch them laugh with their friends and us adults enjoyed talking, playing board games, and having fun. It was a very much needed time.
During the ride to Big Bear I managed to finish reading a Young Adult novel called Mockingbird by Kathryn Erksine. It is about a young lady who has Aspergers. Her brother's death causes her to search out Closure which she cannot quite understand. The book is done through her point of view with her thinking a lot in her head about how people talk, interact, and what they do. It gave me an interesting look into my daughters perspective on life. The way she sees things and lead to a few topics on things that we have noticed and are trying to understand with S. Super easy read for ages 9-12.
Thursday, September 15, 2011
Breathe
It's been awhile since I last posted. I honestly don't know what has been going on. We've been so busy with the school life. The every day rut of pick up and drop offs. Nothing really has been changing too much. I've been spending some time secretly observing S at school and out of school. Her next BIG evaluation is next Thursday and I have pages and pages to fill out. A few things I have noticed is her social skills have not been improving but getting worse. Is that possible? For her, she's not depressed or realizes that their is a difference. I see her pulling away more often from big crowds or old friends. The play date invitation's that we once received from her many school friends don't come around too often or at all. I watch the other moms make plans as I stand in the background. I don't take offense to this as I do have other children and know the routine, how it works. If your kid isn't playing with my child (or another) then that's it, your not going to receive an invite.
A couple of times when I have watched her play at school. She's playing by herself or eating by herself. She does her usual walk up and watch the other kids play but not interacting. She's happy and notices no difference. On the soccer field when it's break time she usually sits on her ball alone while the others play with each others hair, clothes, etc... She does have some good little girlfriends that I am grateful for because they push her to do more. They don't mind her quietness or her grumpiness at times but they are the leaders and she is the follower.
I spoke to someone form Regional the other day and they said once S gets her diagnoses. If the school gives her an IEP then Regional will be forced to help and re-evaluate her for services. Which means they would help fund a lot of her therapies. Please pray for this. This is why I need the diagnosis of ASPERGERS. Therapies are EXPENSIVE!
Besides S .... J seems to be doing good. He is going through something of figuring himself out. His coolness.. what to do, what not to do. And he's only 7 1/2 (sad face).. I find myself just wanting to hold him to cuddle him but he won't let that happen to often.
Besides all the above somewhere I managed to have a birthday. Yes I am a young mother of four. For those of you that don't know I am only 30. What am I suppose to say to that? "Oh your 30 now. How does it feel?" More like I am in my late 40's or older. Age is just a number, really. We all lead different lives and feel so different. HELLO I have FOUR CHILDREN one that I has something going on. HOW DO YOU THINK IT FEELS? No it's not like it's time to grow up because I've already grown up. I think through everything to be honest.. I find myself just going through something. Re-evaluting my life and re-telling myself that it's not about me. I have do this every now and then. My life is my husband and children and that is it. There's not a lot time to sit and breathe just to do.
We are also waiting for our adoption date. SO EXCITED!! Everything is done just waiting for that phone call from the court. And for those of you that don't know my child that I lost a couple of years ago. Their date of birth is coming up and I always find myself thinking of them and how old they would have been around this time. I may not have carried them long but I do think about sometimes.
ALL MY LOVE to you ALL THAT READ and SUPPORT - THANK YOU
A couple of times when I have watched her play at school. She's playing by herself or eating by herself. She does her usual walk up and watch the other kids play but not interacting. She's happy and notices no difference. On the soccer field when it's break time she usually sits on her ball alone while the others play with each others hair, clothes, etc... She does have some good little girlfriends that I am grateful for because they push her to do more. They don't mind her quietness or her grumpiness at times but they are the leaders and she is the follower.
I spoke to someone form Regional the other day and they said once S gets her diagnoses. If the school gives her an IEP then Regional will be forced to help and re-evaluate her for services. Which means they would help fund a lot of her therapies. Please pray for this. This is why I need the diagnosis of ASPERGERS. Therapies are EXPENSIVE!
Besides S .... J seems to be doing good. He is going through something of figuring himself out. His coolness.. what to do, what not to do. And he's only 7 1/2 (sad face).. I find myself just wanting to hold him to cuddle him but he won't let that happen to often.
Besides all the above somewhere I managed to have a birthday. Yes I am a young mother of four. For those of you that don't know I am only 30. What am I suppose to say to that? "Oh your 30 now. How does it feel?" More like I am in my late 40's or older. Age is just a number, really. We all lead different lives and feel so different. HELLO I have FOUR CHILDREN one that I has something going on. HOW DO YOU THINK IT FEELS? No it's not like it's time to grow up because I've already grown up. I think through everything to be honest.. I find myself just going through something. Re-evaluting my life and re-telling myself that it's not about me. I have do this every now and then. My life is my husband and children and that is it. There's not a lot time to sit and breathe just to do.
We are also waiting for our adoption date. SO EXCITED!! Everything is done just waiting for that phone call from the court. And for those of you that don't know my child that I lost a couple of years ago. Their date of birth is coming up and I always find myself thinking of them and how old they would have been around this time. I may not have carried them long but I do think about sometimes.
ALL MY LOVE to you ALL THAT READ and SUPPORT - THANK YOU
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