Exhausted from parenting/ASD children/Welcome to Schmolland!

[ppony]

PPony--Glad your guy had a good birthday! Our kids "get" so much more than they are able to express. I'm sure he felt how much you and your family love him on his special day.

Good news on our front. DS got his first college acceptance to a nearby state college! I am so proud of him. We are still waiting on results for the other schools he applied to, but it is so good to know that he has one acceptance in place.

THANK YOU!!!

And WOOT for your son!!!!!! WONDERFUL!!!!!! You must be SO proud!

 

[snow88]

I'm trying to find a group I might be able to meet w/ of other parents that understand and have the same issues. I haven't found one yet. I'm overwhelmed with how many things I'm supposed to be doing and reading, and listening to and..... you get my drift.

I'm with you on this. I work full time though. I've met with so many therapists that I have them all mixed up and so many things to try and nothing seems to work.

My son is 5yrs old and has been diagnosed recently with Aspergers/HFA. The main problem that they are working on is his social skills because he gets frustrated about it and then gets aggressive with the other kids. Well, there are other factors which they refuse to entertain. He does great with the speech therapists but had major melt downs when the ABA Specialist and Occupational Therapist was there. They all went on a Thursday which is also the same day as swimming so it is a lot of in and out of the classroom and he didn't know that the occupational therapists was coming and neither did I. Actually the ABA specialist told me that she was coming at the last minute too. My son really thrives with his schedules and I know that there will be problems that he will have to deal with like the occupational therapist told me in the EIP meeting but that major meltdown could have been avoided. The speech therapists even suggested that they try to see what is setting him off but they (occupational therapist & Educational Therapist said "no, he needs to learn to self-regulate". The occupational therapist was sort of rude to the speech therapist as well as she said, "the Social Stories are fine but they are just pictures not real life." She said it in a condescending way.

Another thing is when someone asked me if he had sensory issues, she jumped in and said, "no" yet she and the teacher were saying that he puts a bean bag on himself to calm himself down. Isn't that sensory?

Is it normal for them to make a diagnosis after seeing a child one time?


This is the first year that the school has an EIP so the teachers are starting fresh. I'm very new to this as he was just diagnosed in August. I'm thinking of just doing my own research and putting something together to see what works for him.

I don't know maybe I'm just very frustrated because I'm dealing with an elderly father, newly diagnosed son, high school graduate getting into problems, college son (1st year), and dead beat dad of the HFA son. I have spent almost every month this past year in court and spent my vacation days to go there. I'm newly married and my husband has been unemployed off and on so we are having loads of financial problems with him not having steady work.

okay, that's my vent.

 

[bookwormde]

"occupational therapist & Educational Therapist said "no, he needs to learn to self-regulate"."

While true in the long run at 5 this is just silly (many NT kids have trouble with this let alone our kids). If routine helps then that is where to start so the anxiety is reduced, then work on transitions and flexibility (as skill that takes years to develop fully).

Why is a speech therapist commenting on sensory issues? clearly not her specialty. sounds like you need to find a sensory specialist who is competent in ADS to provide a real opinion (some OTs have reasonable knowledge in this area, but can be "dangerous" if they have not been trained in the specifics of ASD).

An initial opinion is common but not a "diagnosis" and ruling something out that is central to the primarily diagnosis is again just "silly"

Sounds like you definitely need some support for you self, which is one of the best things you can do to help your child.

bookwormde

 

[snow88]

"occupational therapist & Educational Therapist said "no, he needs to learn to self-regulate"."

While true in the long run at 5 this is just silly (many NT kids have trouble with this let alone our kids). If routine helps then that is where to start so the anxiety is reduced, then work on transitions and flexibility (as skill that takes years to develop fully).

Why is a speech therapist commenting on sensory issues? clearly not her specialty. sounds like you need to find a sensory specialist who is competent in ADS to provide a real opinion (some OTs have reasonable knowledge in this area, but can be "dangerous" if they have not been trained in the specifics of ASD).

An initial opinion is common but not a "diagnosis" and ruling something out that is central to the primarily diagnosis is again just "silly"

Sounds like you definitely need some support for you self, which is one of the best things you can do to help your child.

bookwormde

I am very new to this so what is the Sensory specialist title?

I live on a small island without any specialists. The Speech Therapists flies over once a week. They said that the Occupational Therapist will be here 2x a year. The Educational Therapist is here all the time. The ABA Specialist doesn't make scheduled visits so I'm not sure when she is coming. I flew over to the big island where the ABA Specialist is and had a two day workshop with her. The teachers have been given a few tips. They have an aide but he is just an intern student so he doesn't have experience or training except that his brother is autistic. They (Educational Therapist) said that everyone will train him to work along with my son. I'm not sure of the title of the 1st person that saw him.

This is the reason that I came here to ask some questions as I feel like my son isn't getting the support he needs but I'm not sure who I need to get him to see or what to do.

The ABA specialist also suggested having something called "Circle of Friends" which involves me sending a letter to a parent asking permission for their child to be included in helping my son learn appropriate behavior. She was supposed to send a draft of a letter that I could send but sent it to the Educational Therapist who gave it to me at the meeting. I was quite taken back when he presented it to me at the meeting. Are you familiar with this?

 

[bookwormde]

peer group work can be exceptionally valuable for social skills, once your child's sensory needs and associated anxiety are at reasonable levels. If meltdowns are still common then it is not the time yet.

Here is a link to a local sensory specialty group near me which should have some useful links
http://allthedifference.org/


bookwormde

 

[snow88]

peer group work can be exceptionally valuable for social skills, once your child's sensory needs and associated anxiety are at reasonable levels. If meltdowns are still common then it is not the time yet.

Here is a link to a local sensory specialty group near me which should ahve some useful links
http://allthedifference.org/


bookwormde

Thank you. I really appreciate your help.

 

[Earstou]

They did "Circle of Friends" at our school, but the school handled inviting people to attend. It surprises me that they asked you to send the letters.

 

[snow88]

They did "Circle of Friends" at our school, but the school handled inviting people to attend. It surprises me that they asked you to send the letters.

I'm not actually sending the letters. They asked for my approval to send the letters.

 

[toodycat]

Snow88---Let me confirm what bookwormde said. Socialization groups, if the child is not in danger of too much tantrum or melting down, can't be beat. I hope it goes well for you and your son.

Things here are going well. DS has been accepted to two colleges so far. He is taking driving lessons to prepare for the commute. He also held it together really well this Christmas when a relative tried to pressure him into letting her use a gift he hadn't yet tried himself. He was never rude, but he didn't cave in either.

Travel question: DS is going to be 18. DH says he is too big to stay in our hotel room and must have his own. DS is mature and self-sufficient. Should I get him his own room next time we go to WDW?

Thanks and Happy New Year!

 

[SilverSynchro919]

Hi DISers,

I'm posting this because I'm not sure where else to go. I'm a 20-year-old college student, and I have a fourteen year old brother with autism. He has some language, and can usually convey what he needs. He does not always choose to use this language, especially not at home, since we typically know what he wants. As he's been entering puberty, things have gotten harder in my house. The combination of his mood swings and the hormones has been resulting in some HUGE fights on a daily (sometimes 2x or 3x) basis. When he gets upset, he usually bangs the inside of his wrist on things as hard as he can, or he will bang his head on the tile floor. He is probably about 5'2", and is very strong. At this point, he is already stronger than both my parents and myself, and when he gets violent, it is getting to be increasingly more difficult to handle. His teacher is less than supportive, and we get nothing but negative notes home. If he has had a good day, they write next to nothing. However, there are no other programs in our area that will allow him to be exempt from state testing, which he would be incredibly unsuccessful in.

At this point, both of my parents have thrown the words "group home" around. We are all absolutely devastated, and every time I think about it I sob uncontrollably. I think it will be sooner than later before he has to go, and I am so incredibly sad and afraid for what the future is going to bring.

I suppose I just need someone to listen that is going to understand. So thank you for reading, and if you have any words of encouragement, that would be greatly appreciated.

 

[Clochette nordique]

Hi DISers,
I'm posting this because I'm not sure where else to go. I'm a 20-year-old college student, and I have a fourteen year old brother with autism. He has some language, and can usually convey what he needs. He does not always choose to use this language, especially not at home, since we typically know what he wants. As he's been entering puberty, things have gotten harder in my house. The combination of his mood swings and the hormones has been resulting in some HUGE fights on a daily (sometimes 2x or 3x) basis. When he gets upset, he usually bangs the inside of his wrist on things as hard as he can, or he will bang his head on the tile floor. He is probably about 5'2", and is very strong. At this point, he is already stronger than both my parents and myself, and when he gets violent, it is getting to be increasingly more difficult to handle. His teacher is less than supportive, and we get nothing but negative notes home. If he has had a good day, they write next to nothing. However, there are no other programs in our area that will allow him to be exempt from state testing, which he would be incredibly unsuccessful in.
At this point, both of my parents have thrown the words "group home" around. We are all absolutely devastated, and every time I think about it I sob uncontrollably. I think it will be sooner than later before he has to go, and I am so incredibly sad and afraid for what the future is going to bring.
I suppose I just need someone to listen that is going to understand. So thank you for reading, and if you have any words of encouragement, that would be greatly appreciated.

Hey there!

I know that placement may not be a real choice, but when it comes to teenage time, sexuality (puberty) and autism, both Isabelle Hénault (Montréal) and Gary Attwood (Australia) are researching and publishing on the topic. They actually appear to be World Leaders in the field.

Isabelle and I both studied B.A. and Masters in Sexology at University of Québec in Montréal. (She 15 years younger, though.....). She then completed a Ph.D. in Psychology. She travels extensively to give workshops and "Train the trainers" and I took all of them. Helps a lot at home! (I am a daughter, a wife and a mother of darlings on the Spectrum.) But she still refuses to diagnose me, even though I have some very "bold" traits

She has videos of her presentation she gave in Sudbury, Ontario and I guess there are more you and your family can see. Contact her. It may take some time but tell her that a Sexologist from Sudbury, Ontario is referring you. She'll know who I am. It won't resolve all the problems, but it will help at least some. She explains how they now know that medication and autism could be very upsetting even more in teenage time, since they react differently to bio-chemicals and the like. She also addresses anxiety, adolescence and Autism.

Another good reference on the teenagers could be: "Teen Brain, Teen Mind". Right this moment I cannot remember the name of the author, but at least you can google the title. He says that the biggest mistake we make with teenagers is to never prevent them of the level of anxiety they will have to deal with. And he adds: "So imagine what it does to kids living with ADHD or kids living on the Spectrum".

So, if someone can help him to deal with his anxiety, it may help him cope better. No promises, but worth to read since it's available.

Hope this help a bit, and btw, it's a wonderful thing to never stay alone with the situations, so good for you to post here,

Poussière de fée!

 

[Clochette nordique]

Oh, and if you need more, please pm me.

Poussière de fée!

 

[blondietink]

My DS is now 19 years old and I will tell you that puberty is I think harder to manage than any other time of his life (so far, anyway).

My DS is verbal but has tremendous difficulty expressisng what he is feeling. If he is crying from watching a sad movie for example, if you ask him if he is sad, he will say no, he's happy. He used to sob uncontrollably hearing the song "Silent Night" , but he would never tell us why or what he was feeling. He would have "meltdowns" frequently during puberty. He even called 911 himself one time as his father filled in a hole in the ground that DS had made by swinging on a swing.

Medication will probably not be the answer as it can affect people with Autism differently than the regular population. I think you need to get a hold of a good behavior specialist/psychologist who has a history/experience in dealing with teenagers with Autism to help out. These specialists can be found through the school, but probably you need to seek out help from an outside agency that will come into the home. I would never advocate a group home. From 11 years working in the developmental disability field, I have seen horrible problems when people are put into a group home. Usually whatever problem they were having becomes much worse.

I would also pressure the school to get appropriate help for your brother. I don't care if they say they can't do anything, they can if push comes to shove. They just don't want to pay for it.

Good luck. And remember, it will get better. If you saw my DS now, and compare him to the puberty years, you would be amazed. He is so happy and appropriate in most social situations. He loves to travel. We did not medicate him and he is still living at home and doesn't want to move anywhere.

 

[kirstenb1]

I'm trying to find a group I might be able to meet w/ of other parents that understand and have the same issues. I haven't found one yet. I'm overwhelmed with how many things I'm supposed to be doing and reading, and listening to and..... you get my drift.

I'm with you on this. I work full time though. I've met with so many therapists that I have them all mixed up and so many things to try and nothing seems to work.

My son is 5yrs old and has been diagnosed recently with Aspergers/HFA. The main problem that they are working on is his social skills because he gets frustrated about it and then gets aggressive with the other kids. Well, there are other factors which they refuse to entertain. He does great with the speech therapists but had major melt downs when the ABA Specialist and Occupational Therapist was there. They all went on a Thursday which is also the same day as swimming so it is a lot of in and out of the classroom and he didn't know that the occupational therapists was coming and neither did I. Actually the ABA specialist told me that she was coming at the last minute too. My son really thrives with his schedules and I know that there will be problems that he will have to deal with like the occupational therapist told me in the EIP meeting but that major meltdown could have been avoided. The speech therapists even suggested that they try to see what is setting him off but they (occupational therapist & Educational Therapist said "no, he needs to learn to self-regulate". The occupational therapist was sort of rude to the speech therapist as well as she said, "the Social Stories are fine but they are just pictures not real life." She said it in a condescending way.

Another thing is when someone asked me if he had sensory issues, she jumped in and said, "no" yet she and the teacher were saying that he puts a bean bag on himself to calm himself down. Isn't that sensory?

Is it normal for them to make a diagnosis after seeing a child one time?


This is the first year that the school has an EIP so the teachers are starting fresh. I'm very new to this as he was just diagnosed in August. I'm thinking of just doing my own research and putting something together to see what works for him.

I don't know maybe I'm just very frustrated because I'm dealing with an elderly father, newly diagnosed son, high school graduate getting into problems, college son (1st year), and dead beat dad of the HFA son. I have spent almost every month this past year in court and spent my vacation days to go there. I'm newly married and my husband has been unemployed off and on so we are having loads of financial problems with him not having steady work.

okay, that's my vent.

You have so much going on!!! Also with so many therapists, I'd have a hard time sorting through it all. OUr dd is 6 with the same dx. She has received help from therapists for many years, starting at 7 mths because of hypotonia.

Have you had a chance to do some reading about sensory issues? I really liked The Out of Sync Child, by Carol Kranowitz. She has a series of books that offer many ideas for kids who are sensory seekers or conversely, avoiders. I also love Stanley Greenspan's books. He gives great ideas for engaging your child, and increasing their interaction and attention span.

I know when our dd was dx'd at 20 mths, I spent a lot of time researching and trying many different things. I know you didn't ask, but if I were you, I might slow down for a little while. It sounds like the speech therapists have a good repoire with your son. If the OT and ABA therapists are less effective, I might have them meet with him less often.

Normally, I'd never recommend decreasing services. But you're in a really unique situation with living on an island. If they're interacting with your son negatively, I think it could damage any progress he's making. Anyway, there's a lot you can do to try different sensory soothers etc.

BTW, I didn't think dd was getting enough help from the OT or PT at school, so we have her in private practice. This can be expensive, and again, you may not have a lot of providers close at hand, so I'm not sure this is an option for you.

Finally regardless of the specialty, it sounds like the speech therapists understand your son better than the others. A good speech therapist can cross over and help with sensory issues, even though it's not his/her specialty. Go with your gut instinct.

 

[lovethattink]

My son is 5yrs old and has been diagnosed recently with Aspergers/HFA. The main problem that they are working on is his social skills because he gets frustrated about it and then gets aggressive with the other kids. Well, there are other factors which they refuse to entertain. He does great with the speech therapists but had major melt downs when the ABA Specialist and Occupational Therapist was there. They all went on a Thursday which is also the same day as swimming so it is a lot of in and out of the classroom and he didn't know that the occupational therapists was coming and neither did I. Actually the ABA specialist told me that she was coming at the last minute too. My son really thrives with his schedules and I know that there will be problems that he will have to deal with like the occupational therapist told me in the EIP meeting but that major meltdown could have been avoided. The speech therapists even suggested that they try to see what is setting him off but they (occupational therapist & Educational Therapist said "no, he needs to learn to self-regulate". The occupational therapist was sort of rude to the speech therapist as well as she said, "the Social Stories are fine but they are just pictures not real life." She said it in a condescending way.

Another thing is when someone asked me if he had sensory issues, she jumped in and said, "no" yet she and the teacher were saying that he puts a bean bag on himself to calm himself down. Isn't that sensory?

Is it normal for them to make a diagnosis after seeing a child one time?


This is the first year that the school has an EIP so the teachers are starting fresh. I'm very new to this as he was just diagnosed in August. I'm thinking of just doing my own research and putting something together to see what works for him.

I don't know maybe I'm just very frustrated because I'm dealing with an elderly father, newly diagnosed son, high school graduate getting into problems, college son (1st year), and dead beat dad of the HFA son. I have spent almost every month this past year in court and spent my vacation days to go there. I'm newly married and my husband has been unemployed off and on so we are having loads of financial problems with him not having steady work.

okay, that's my vent.

I am still fairly new to all this too. Perhaps you can get the OT a copy of the book The Explosive Child: A new Approach for Understanding and Parenting Easily Frustrated, "Chronically Inflexible" Children by Ross W. Greene. It has been life changing for me and I'm not quite half way through the book. It really explains how a motivational behavior change doesn't work with easily frustrated/"chronically inflexible" children.

Between this book and the Out of Sync Child, we are seeing huge changes in our son's behavior. There are still meltdown frequently, but they are short and not hour long or more like they use to be.

"occupational therapist & Educational Therapist said "no, he needs to learn to self-regulate"."

While true in the long run at 5 this is just silly (many NT kids have trouble with this let alone our kids). If routine helps then that is where to start so the anxiety is reduced, then work on transitions and flexibility (as skill that takes years to develop fully).

Why is a speech therapist commenting on sensory issues? clearly not her specialty. sounds like you need to find a sensory specialist who is competent in ADS to provide a real opinion (some OTs have reasonable knowledge in this area, but can be "dangerous" if they have not been trained in the specifics of ASD).

An initial opinion is common but not a "diagnosis" and ruling something out that is central to the primarily diagnosis is again just "silly"

Sounds like you definitely need some support for you self, which is one of the best things you can do to help your child.

bookwormde

How does one go about finding a senory specialist?

 

[bookwormde]

Google is always a start, or you can go on the site that I put the link my post above.

 

[snow88]

You have so much going on!!! Also with so many therapists, I'd have a hard time sorting through it all. OUr dd is 6 with the same dx. She has received help from therapists for many years, starting at 7 mths because of hypotonia.

Have you had a chance to do some reading about sensory issues? I really liked The Out of Sync Child, by Carol Kranowitz. She has a series of books that offer many ideas for kids who are sensory seekers or conversely, avoiders. I also love Stanley Greenspan's books. He gives great ideas for engaging your child, and increasing their interaction and attention span.

I know when our dd was dx'd at 20 mths, I spent a lot of time researching and trying many different things. I know you didn't ask, but if I were you, I might slow down for a little while. It sounds like the speech therapists have a good repoire with your son. If the OT and ABA therapists are less effective, I might have them meet with him less often.

Normally, I'd never recommend decreasing services. But you're in a really unique situation with living on an island. If they're interacting with your son negatively, I think it could damage any progress he's making. Anyway, there's a lot you can do to try different sensory soothers etc.

BTW, I didn't think dd was getting enough help from the OT or PT at school, so we have her in private practice. This can be expensive, and again, you may not have a lot of providers close at hand, so I'm not sure this is an option for you.

Finally regardless of the specialty, it sounds like the speech therapists understand your son better than the others. A good speech therapist can cross over and help with sensory issues, even though it's not his/her specialty. Go with your gut instinct.

I haven't read the book but I will try to get it. I did tell the Educational Therapist that I feel like my DS has sensory issues and he said that he would have him tested. I received a question form on sensory issues last week so I feel like I'm making some progress. On Thursday, I have a meeting with the Educational therapist, teacher and teacher's aide.

DS is doing much better on the playground. Although last week was a tough week due to a change in teachers (art & music). Teachers were switched around to other schools.

 

[snow88]

I am still fairly new to all this too. Perhaps you can get the OT a copy of the book The Explosive Child: A new Approach for Understanding and Parenting Easily Frustrated, "Chronically Inflexible" Children by Ross W. Greene. It has been life changing for me and I'm not quite half way through the book. It really explains how a motivational behavior change doesn't work with easily frustrated/"chronically inflexible" children.

Between this book and the Out of Sync Child, we are seeing huge changes in our son's behavior. There are still meltdown frequently, but they are short and not hour long or more like they use to be.


I saw the book "The Explosive child.." in my searches. I am debating a few books but want to make sure that I get the right ones. Anyone heard of "The Aspergers Comprehensive Handbook Help for Parents with Aspergers children and Teens" by Mark Hutten M.A.? It's an e-book.

 

[iwrbnd]

The Explosive Child was recommended to me by our child's doctor and I loved it! It was life-changing for me to see behaviors as a developmental delay instead of always being outright defiance. The Out of Sync Child was good, too!

I haven't been on here in a long time. (I'm the one who wrote the first entry during a very exhausting time in my parenting life). I love this thread and it helped me so much! I appreciate all the love and advice given and the incredible acceptance for any and all feelings expressed!

Things have improved so much in my life from the day I wrote that! It's not perfect (I still have one child with mild autism, one with mild aspergers, and the other two have now been diagnosed with mild ADHD) but everything is going way better! Maturity and growing older has done wonders for my kids! (As has the pharmaceutical companies! Lol!) It seems the older they get, the better they do. It gives me hope and a light at the end if the tunnel. I don't wish my parenting days to end anymore. I'm enjoying them once again!

Thank you again for all the knwledge and support on this thread. I want to send a message out that it can get better!!! Hang in there!!!

 

[toodycat]

Hi, everyone. Just checking in. Hope you are all well.