lilmermaid
10-12-2004, 11:44 AM
Hi, I wanted to introduce myself.
I have a 9 (soon to be 10) year old son with Autism. He is very verbal, but definitely lags FAR behind in intellectual, social and academic skills than his peers. I'm a SAHM mom, and I also have a daughter who is 11. We recently moved from Minnesota (where we lived for 8 years) to Oklahoma (due to my DH's job). Although we live in a small city (pop 48,000), the school is actually doing a good job with my son so far. That was our biggest concern. We came from the Twin Cities in MN, and the LARGE school district he was in there (in one of the St. Paul suburbs) was very accomodating. Surprisingly, the program here is very similar. My son is in a mainstream elementary school that has an autism program for support. He has a full time one-on-one aide, and spends about 1/2 his day in the regular classroom (he's in third grade). In previous school years, he has spent almost the entire day in the mainstream classroom. But, the academics are getting harder and take up more of the day, and my son works better when he's taken to a quiet area for one-on-one teaching. So, while I'm sad to see him spending more time out of class, I'm happy that he's getting the academic help he needs. It was tough for me to come to terms with that.
I've seen several posts here asking what life is like for those with "older" children. My son isn't "older", but I think back to what it was like in his preschool years, and I can really relate to a lot of the posts I see here from those of you with younger children. My son was dx'ed with "suspected PDD" by a neurologist in 1998, when he was not quite 4 years old. This was based on a 30-45 minute assessment of my son in his office. The following year, we took my son to Minneapolis Children's for a VERY thorough 2-day multidisciplinary evaluation that included speech, OT, hearing, medical, etc. That was when we received the Autism Dx. My world fell apart that day. It took me several years to even SAY the word autism without crying.
It was SO hard when my son was younger. He started home-based early intervention at the age of 2, even before we suspected autism because his speech was lagging. At 3, he went into Early Childhood Special Ed. He hated it, and he screamed and cried every day for the first two months. But, it was good for him, and as much as it ripped my heart out to leave him there every day, again, it was VERY good for him. He went to preschool for three years. We held him back an extra year because we thought that might give him a leg up socially. I'm not sure if that really helped, but he's done pretty well in elem. school. He's bringing home decent grades, and he's doing work that I didn't think he'd be able to do --- 100%'s on spelling tests (age appropriate tests), and B's on science and social studies. He enjoys going to school, although the transition to the new school was hard on him. School has been in session for about a month and a half, and he's just starting to settle in.
As for what life is like with an older child. My son has his moments, to be sure. He can throw a tantrum with the best of them, and hit, scream, kick, pinch. But that has gotten MUCH better as he's gotten older. While I won't go so far as to say our life is normal (pretty much everything we do has to be carefully thought out before hand---you know what I mean, I'm sure), we do have as normal of a life as a lot of people. We've been taking Mark out and about since he was a baby. We go out to eat, movies, shopping, vacations (Disney World and Disneyland are excellent places to take children with autism---they really make efforts to accomodate--Mark has been to Disney parks for eight different vacations...it's THAT good for him). It's not always easy, and it takes a very heavy hand to discipline him. We don't have the exact same expectations discipline wise for him as we do for our DD, but through a lot of time-outs, taking away of privileges, and stern talking to, I know he's learning what's right and what's wrong. It doesn't always help when he gets really mad or upset, but I can definitely see progress.
But, even with all his progress, I can honestly say that not a day goes by that I don't feel a twinge of sadness or anxiety (and sometimes far more than just a twinge) of what his life will be like as he gets older. Will he live with us the rest of his life? Will he be able to hold a job? Who'll take care of him when we are gone? It's very scary to think about. :(
Anyway, sorry this got so long. I look forward to reading about everyone else's children. :)
I have a 9 (soon to be 10) year old son with Autism. He is very verbal, but definitely lags FAR behind in intellectual, social and academic skills than his peers. I'm a SAHM mom, and I also have a daughter who is 11. We recently moved from Minnesota (where we lived for 8 years) to Oklahoma (due to my DH's job). Although we live in a small city (pop 48,000), the school is actually doing a good job with my son so far. That was our biggest concern. We came from the Twin Cities in MN, and the LARGE school district he was in there (in one of the St. Paul suburbs) was very accomodating. Surprisingly, the program here is very similar. My son is in a mainstream elementary school that has an autism program for support. He has a full time one-on-one aide, and spends about 1/2 his day in the regular classroom (he's in third grade). In previous school years, he has spent almost the entire day in the mainstream classroom. But, the academics are getting harder and take up more of the day, and my son works better when he's taken to a quiet area for one-on-one teaching. So, while I'm sad to see him spending more time out of class, I'm happy that he's getting the academic help he needs. It was tough for me to come to terms with that.
I've seen several posts here asking what life is like for those with "older" children. My son isn't "older", but I think back to what it was like in his preschool years, and I can really relate to a lot of the posts I see here from those of you with younger children. My son was dx'ed with "suspected PDD" by a neurologist in 1998, when he was not quite 4 years old. This was based on a 30-45 minute assessment of my son in his office. The following year, we took my son to Minneapolis Children's for a VERY thorough 2-day multidisciplinary evaluation that included speech, OT, hearing, medical, etc. That was when we received the Autism Dx. My world fell apart that day. It took me several years to even SAY the word autism without crying.
It was SO hard when my son was younger. He started home-based early intervention at the age of 2, even before we suspected autism because his speech was lagging. At 3, he went into Early Childhood Special Ed. He hated it, and he screamed and cried every day for the first two months. But, it was good for him, and as much as it ripped my heart out to leave him there every day, again, it was VERY good for him. He went to preschool for three years. We held him back an extra year because we thought that might give him a leg up socially. I'm not sure if that really helped, but he's done pretty well in elem. school. He's bringing home decent grades, and he's doing work that I didn't think he'd be able to do --- 100%'s on spelling tests (age appropriate tests), and B's on science and social studies. He enjoys going to school, although the transition to the new school was hard on him. School has been in session for about a month and a half, and he's just starting to settle in.
As for what life is like with an older child. My son has his moments, to be sure. He can throw a tantrum with the best of them, and hit, scream, kick, pinch. But that has gotten MUCH better as he's gotten older. While I won't go so far as to say our life is normal (pretty much everything we do has to be carefully thought out before hand---you know what I mean, I'm sure), we do have as normal of a life as a lot of people. We've been taking Mark out and about since he was a baby. We go out to eat, movies, shopping, vacations (Disney World and Disneyland are excellent places to take children with autism---they really make efforts to accomodate--Mark has been to Disney parks for eight different vacations...it's THAT good for him). It's not always easy, and it takes a very heavy hand to discipline him. We don't have the exact same expectations discipline wise for him as we do for our DD, but through a lot of time-outs, taking away of privileges, and stern talking to, I know he's learning what's right and what's wrong. It doesn't always help when he gets really mad or upset, but I can definitely see progress.
But, even with all his progress, I can honestly say that not a day goes by that I don't feel a twinge of sadness or anxiety (and sometimes far more than just a twinge) of what his life will be like as he gets older. Will he live with us the rest of his life? Will he be able to hold a job? Who'll take care of him when we are gone? It's very scary to think about. :(
Anyway, sorry this got so long. I look forward to reading about everyone else's children. :)
Sponsor
SHReed
10-12-2004, 12:17 PM
Lilmermaid,
Your post was very interesting to me and I share your concerns about the future. I have a 5 year old son who is High Functioning, and he is in regular Kindergarten, has an aide who spends most of the afternoon with him one on one, and he has speech therapy 60 min. a week and OT 30 min. a week, all through the school. He seems to really enjoy going to school and sometimes he acts like a typical little boy, but his difficulties with social interaction and language really set him apart from his classmates. My husband and I also worry about what his future will be like - will he enjoy activities that other kids do? Will he go to college and eventually go out on his own? Will he be able to live independently? It's not that we don't want to take care of him - we'd be perfectly happy for him to live with us always but we want him to be able to live a productive, fulfilling life. I hope that we're doing all we can for him now so that he can reach his potential because I know that he does have a lot of potential. One of the most difficult things about our son's autism is not having that crystal ball to see what his future looks like. I guess we need to focus on what we can do for him now and realize that there are some things we can't control.
Is your son considered high-functioning? What services has he received through the school system over the years? Did you ever get treatment for him outside of the school system? Has he been on a special diet? I'm asking these questions because I'm curious to know what treatment you and other parents of older children have pursued over the years. I think we're doing the best we can for our son right now (our finances limit us considerably), but there's always a nagging guilt that we should be doing more.
Your post was very interesting to me and I share your concerns about the future. I have a 5 year old son who is High Functioning, and he is in regular Kindergarten, has an aide who spends most of the afternoon with him one on one, and he has speech therapy 60 min. a week and OT 30 min. a week, all through the school. He seems to really enjoy going to school and sometimes he acts like a typical little boy, but his difficulties with social interaction and language really set him apart from his classmates. My husband and I also worry about what his future will be like - will he enjoy activities that other kids do? Will he go to college and eventually go out on his own? Will he be able to live independently? It's not that we don't want to take care of him - we'd be perfectly happy for him to live with us always but we want him to be able to live a productive, fulfilling life. I hope that we're doing all we can for him now so that he can reach his potential because I know that he does have a lot of potential. One of the most difficult things about our son's autism is not having that crystal ball to see what his future looks like. I guess we need to focus on what we can do for him now and realize that there are some things we can't control.
Is your son considered high-functioning? What services has he received through the school system over the years? Did you ever get treatment for him outside of the school system? Has he been on a special diet? I'm asking these questions because I'm curious to know what treatment you and other parents of older children have pursued over the years. I think we're doing the best we can for our son right now (our finances limit us considerably), but there's always a nagging guilt that we should be doing more.
lilmermaid
10-12-2004, 12:30 PM
One of the most difficult things about our son's autism is not having that crystal ball to see what his future looks like. I guess we need to focus on what we can do for him now and realize that there are some things we can't control.
That is what I have such a hard time with...the fact that we have no control over Autism. I honestly believe it has made me more of a control freak in other parts of my life.
Is your son considered high-functioning?
I remember his preschool teacher saying she thought he was "high functioning", but he has never been given any type of label in terms of severity by any medical provider. Some days he seems high functioning to me, and some days definitely not.
What services has he received through the school system over the years?
He has received speech and OT from the schools, as well as adaptive physical education, and in our old school district, adaptive music. But the biggest thing he has received from the school is the one on one aide. There is no way he'd be able to function at any successful level without it. He has a very short attention span, and he needs lots of prompting to do his assignments.
Did you ever get treatment for him outside of the school system?
Yes. A few years ago we put him in some intensive private therapy for the summer...he was going to speech, OT and physical therapy (for his toe walking) 2-3 times a week. When the school year started back up, we kept up with speech and OT, but by December, I decided to stop it. He was worn out from a full school day plus an hour or two of therapy afterwards, and the therapists weren't nearly as helpful/understanding as I expected them to be. We were/are fortunate that our insurance covered all of it. I've thought about picking up the private therapy again now that we've moved, but the town we live has limited resources for that, and I don't want to have to drive an hour or two to take him to private therapy. We just couldn't manage that as a family and keep my DD's life somewhat normal.
Has he been on a special diet?
I researched and considered the GF/CF diet, but never took the plunge. My son has eczema and year round allergies. We did learn (on our own, through trial and error) that he has a sensitivity to oats, certain kinds of wheat, and all artificial food coloring. The oats made him extremely hyper, and the wheat and dye were exacerbating his eczema.
there's always a nagging guilt that we should be doing more.
I feel that way all the time too! :(
Take care! :)
That is what I have such a hard time with...the fact that we have no control over Autism. I honestly believe it has made me more of a control freak in other parts of my life.
Is your son considered high-functioning?
I remember his preschool teacher saying she thought he was "high functioning", but he has never been given any type of label in terms of severity by any medical provider. Some days he seems high functioning to me, and some days definitely not.
What services has he received through the school system over the years?
He has received speech and OT from the schools, as well as adaptive physical education, and in our old school district, adaptive music. But the biggest thing he has received from the school is the one on one aide. There is no way he'd be able to function at any successful level without it. He has a very short attention span, and he needs lots of prompting to do his assignments.
Did you ever get treatment for him outside of the school system?
Yes. A few years ago we put him in some intensive private therapy for the summer...he was going to speech, OT and physical therapy (for his toe walking) 2-3 times a week. When the school year started back up, we kept up with speech and OT, but by December, I decided to stop it. He was worn out from a full school day plus an hour or two of therapy afterwards, and the therapists weren't nearly as helpful/understanding as I expected them to be. We were/are fortunate that our insurance covered all of it. I've thought about picking up the private therapy again now that we've moved, but the town we live has limited resources for that, and I don't want to have to drive an hour or two to take him to private therapy. We just couldn't manage that as a family and keep my DD's life somewhat normal.
Has he been on a special diet?
I researched and considered the GF/CF diet, but never took the plunge. My son has eczema and year round allergies. We did learn (on our own, through trial and error) that he has a sensitivity to oats, certain kinds of wheat, and all artificial food coloring. The oats made him extremely hyper, and the wheat and dye were exacerbating his eczema.
there's always a nagging guilt that we should be doing more.
I feel that way all the time too! :(
Take care! :)
rywilli25
10-12-2004, 03:20 PM
hey there and welcome What part of oklahoma do you live in?? I also have an autistic child. I live in Tulsa. My daughter is only 23 months old and we are having trouble finding any type of good therapy for her. I have early intervention, but they only come out once a week for an hour. Let me know what part of ok you are in. I am glad your son is doing well in his school.
rochelle Cayla 23 months ASD Tyler 4 NT
rochelle Cayla 23 months ASD Tyler 4 NT
lilmermaid
10-12-2004, 05:53 PM
We are in what I guess is called north central oklahoma, about two hours from Tulsa, I think.
When my son was in early childhood special education and had home based services, he only received one hour once a week. Once he turned three, he went to the early childhood preschool, which I think did a lot of good for him. Is that available in Tulsa?
When my son was in early childhood special education and had home based services, he only received one hour once a week. Once he turned three, he went to the early childhood preschool, which I think did a lot of good for him. Is that available in Tulsa?
KatieUSA
10-12-2004, 11:26 PM
Hi
My son has just recently been diagnosed with autism and I'm wondering why you chose not to try the GF/CF diet. I've heard some really good things about it...very promising. I know it's not a sure thing but wouldn't it be worth a try even with the smallest chance that it would help autistic children to improve?
My son has just recently been diagnosed with autism and I'm wondering why you chose not to try the GF/CF diet. I've heard some really good things about it...very promising. I know it's not a sure thing but wouldn't it be worth a try even with the smallest chance that it would help autistic children to improve?
lilmermaid
10-13-2004, 01:10 AM
Not trying the GF/CF diet was a decision we made based on what we thought was best for our son, and our family. :)
viveca
10-13-2004, 02:03 AM
Hello My son is 4 and we initially did not want to try the gfcf diet either maily because it is so restrictive and I didn't have the heart to take away the few things he will eat .. Over the last year we have started to slowly swich things in his diet and some days I do see a bit of a change...
sunnybrook
10-13-2004, 10:36 AM
Hi all,
I worry about my son's future too. He is 8 and in 3rd grade this year in a language class there are only about 8 kids in the class. He has made a lot of progress since his diagnosis. Lunch time sometimes still causes him problems. I think it may be a sensory issue with all the noise and distactions in the lunch room. Next year they think he will be ready to move out of the language class and into a regular classroom. I worry about how he will adjust going from a small class to a class with about 20 kids. He is easily distracted and has a hard time sitting still. He does work at grade level but often has to be directed to remain on task. I am so happy for the progress he has made in the last couple years and it has been significant. But, I too can't help to worry about how his life will be as an adult.
Becky
I worry about my son's future too. He is 8 and in 3rd grade this year in a language class there are only about 8 kids in the class. He has made a lot of progress since his diagnosis. Lunch time sometimes still causes him problems. I think it may be a sensory issue with all the noise and distactions in the lunch room. Next year they think he will be ready to move out of the language class and into a regular classroom. I worry about how he will adjust going from a small class to a class with about 20 kids. He is easily distracted and has a hard time sitting still. He does work at grade level but often has to be directed to remain on task. I am so happy for the progress he has made in the last couple years and it has been significant. But, I too can't help to worry about how his life will be as an adult.
Becky
lilmermaid
10-13-2004, 10:49 AM
Becky, your son sounds a lot like mine, in terms of needing prompts to stay on task, and not wanting to sit still. Will your school district provide him with his own aide when he starts mainstreaming? ((fingers crossed)) :)
sunnybrook
10-13-2004, 02:13 PM
Hi lilmermaid, thanks for crossing your fingers for us. :) I asked for an aide before he was moved into the language class and got the usual cost issues answer. :( But, hopefully at the close of this school year when I bring it up again at his iep meeting they will be willing too. I think it will make the school year nicer for everyone involved.