Eval today.....

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Registered: 07-24-2003
Eval today.....
10
Fri, 09-02-2005 - 10:50pm

First, thanks to everyone who was so helpful in getting us this far. I've really appreciated having someplace to come and ask questions where I could expect such thoughtful and warm responses.

So, the doctor we saw today said he thinks my daughter's on the spectrum and that on top probably has an auditory processing problem. However, he didn't want to go any farther than that until he's talked to some other folks because she's unique. He did say that her control issues are off the chart and wants to look into behavior modification therapy for her.

Which brings me to my next set of questions....

Behavioral modification sounds a lot like the way I already try to parent. Is it more than positive reinforcement and staying on top of activities? And, is it different than "Behavioral Modification Theory" which seems to state that all behavior is psychological and has not physcial/neurological component. Was the doc trying to tell me that I've already psychologically damaged my 3 year old?

In relation to the control issues...Do your kids' doctors tell you that your child is a control freak? Do you think her doc just describing an expected symptom of ASD or is he talking about an additional feature?

The doctor seems to think that putting my daughter into preschool would be helpful. I was planning to homeschool. Any thoughts?

I knew this was coming. I'd done so much reading, that I shouldn't have been surprised. I expected to be relieved when it was all done and I could move onto something more proactive to help her. So, why do I feel so disoriented? I guess I don't really need an answer to that one.

Thank you in advance.

Mary

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Registered: 06-25-2003
Sat, 09-03-2005 - 8:22am

Mary,

It is one thing "knowing in your heart" that your child is on the Spectrum, and quite another thing to be told by a Dr. Previously, there was always the chance that the Dr. would tell you that you are nuts, and she is fine(!). Now that possibility is gone. It is a kick in the teeth, and I think we all went through it. I know I did. For me, it took a couple of months to fully get over it (longer for DH -about 6 months!). (((((((Hugs)))))) to you. No mater how prepared you thought you were, this is a difficult time. Please feel free to come here and vent, question and cry as much as you need to. we are open 24/7/365! It helped me a lot.

>>Was the doc trying to tell me that I've already psychologically damaged my 3 year old?<<
He wasn't and you haven't. I don't know too much about behaviour modification theory. I do know that Peter had many, many behaviours that required modificaion (LOL) we worked with our first preschool to learn a bunch of tips and tricks from reward charts, to timers, setting up strict outines, etc etc. None of it was rocket science, but I probably wouldn't have thought of it alone. The eval. also helped a lot to understand some fundamental truths; such as the fact that my 3y, 4mo boy had the language capacity of a child aged 1y,1mo , and to use pictures, not words in communicating! Actually, now that I think about it, I had to modify a lot of my *own* behaviours! (maybe that's what they really mean...)

>>In relation to the control issues...Do your kids' doctors tell you that your child is a control freak? Do you think her doc just describing an expected symptom of ASD or is he talking about an additional feature?<<
To my knowledge, ASD kids are control freaks. Period. I am happy to be corrected on this (Suzi?), but I know it is certainly true of my son. For him: Knowledge is power. Knowing routines and being warned of changes give him more of a sense of 'control' because he knows what was coming next. KWIM? Also an ordered house (which as ADDgirl, I don't often have!), and a 'safe' place helped him a lot.

>>The doctor seems to think that putting my daughter into preschool would be helpful. I was planning to homeschool. Any thoughts?<<
Personally, I agree with the Dr. -although not if he means 'regular preschool with no extra support' (and I doubt he means that). Your DD needs to be with peers to learn how to interact with them -the earlier the better, and probably needs help from specially trained individuals: Some or all of: speech therapy, Occupational therapy, physical therapy, social skills training, Special Ed, etc etc -some of this you can do at home, but the social thing is key, IMO, and needs other kids in order to work.

Typical preschool with an additional specially trained teacher did WONDERS for my DD. She is literally a different person now. An approachable (and approachING), happier, and far less scared person! Special preschool did wonders for my son. He finally learned to really talk (i.e. functional language, rather than echolalia) at 4y 3mos because of a wonderfully dedicated teacher/SLP. That changed *all* of our lives for the better.

I think I have answered all that I can. I hope it helps.

-Paula

-Paula

visit my blog at www.onesickmother.com
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Registered: 02-24-2004
Sat, 09-03-2005 - 12:21pm

Mary,

I'd have to agree with Paula about the preschool issue. Nathan was attending a Montessori preschool when we had him evaluated. He didn't have any support, but we finished the year there. It was a small class and his teachers (there were 2) were extremely loving and helpful. We did enroll him in a special preschool (which he attended twice a week as well) because they had speech therapy for him and teachers who were skilled with autistic children.

He then went to kindergarten and is now in the 1st grade. He's in a regular class with support and speech therapy too. Interacting with the other kids has helped Nathan. He's very different at school. He listens, sits still, talks to the other kids and has even started "playing" with them at recess this year!!! He follows the rules and it becoming more and more independent. I know that by watching the other children this does encourage and motivate him. Since school started last week, his talking has even picked back up!!!

I don't think that I would've had the same results if I had homeschooled him. He tantrums more with me. And watching him at school has let me see that he CAN do it. I was extremely worried he first started school. I didn't think he would be able to do it. But he follows direction, asks when he needs help, and can actually be polite too!!!

His older brother, Tyler, just commented to me yesterday about how well Nathan does at school. This is the FIRST year that they are at the same school together. Tyler is "watching" him when he can. (at recess from afar, and when he passes by Nathan's class). Tyler asked me why Nathan does so well at school......and then he acts like THIS at home???? Tyler was EXTREMELY worried about Nathan. He didn't like not being able to be with him at school. But now he sees how well Nathan does on his own. Makes me very proud of both of my boys!!!

Michelle

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Registered: 07-24-2003
Sun, 09-04-2005 - 10:10pm

Thank you so, so much! I really feel a lot better today. Somewhere deep in the night last night I realized that I was making this too much about me and what kind of mother I am, and all the things I might have done that will make this harder. Then it occurred to me that I needed to stop doing that and think about my daughter, and how amazing she is, no matter what label she has. I truly think she's an amazing kid and that doesn't change because there's a pathology tied to her uniqueness.

Thank you for the support and the information. I actually realized that it was nice to know that I had a whole new pool of information to dip into about things like potty training and handling a trip to the store.

Mary

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Registered: 03-26-2003
Mon, 09-05-2005 - 12:51am

I don't know how I missed this. I am sorry. If there is ever a time when a mom needs support it is when she first hears those words she thought she was ready for but wasn't.

It isn't your fault. Like paula said, ASD folks are control freaks by nature. They have to be to control and understand thier world. It isn't the same as doing it willfully because they think they can get away with it, or because you have spoiled them.

Getting them beyond the control freak part takes alot of patience and different education. It means allowing them to control somethings and teaching them skills and coping mechanisms to accept things that are beyond thier control. It means accepting somethings that things happen without warning beyond thier control and they melt down. It also means sometimes they have been putting up with stuff out of thier control for so long that their body and mind just rebell and they go into meltdown. And sometimes it means letting them be a control freak until you help them with those skills.

I use ABA type behavior modification and positive reinforcement to help my kids with some of thier control issues. It is alot of work and compromise but worth it. I was reading a book about AS today and a gentleman went across the country and met many AS adults and children. One of the things that occured to me is how many of these challenges the adults had that my kids used to but not as bad anymore. I often wonder if it is because I had the fortune to live when we do and was able to address this issues early on. Things like clothing and food issues, etc. There was a story of one man who would only eat biscuits and scrambled eggs. I know that or something similar could have been for us. The kids are still kind of controlling about food but they eat a healthy diverse diet and it isn't near the problems others have with food. That is just one example.

In other ways I do give in. Is it really going to hurt anyone if Dave only wants a blue cup or if Cait insists on wearing flip flops whenever she isn't in school including winter? Well we do live in S. Cali so it isn't that cold but it does get quite chilly and rainy and still she wears flip flops. Hard to find new ones in winter, lol.

I still remember the feeling hitting the pit of my stomach when both my kids were diagnosed. Driving home completely numb. And I was so more than ready. I worked with kids like this for years. I knew the signs but I still hoped that the doctor would tell me I was crazy and things were fine.

Best wishes to you and big big hugs.

Renee

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Avatar for finian
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Registered: 03-25-2003
Mon, 09-05-2005 - 7:54am

My son, 6, isn't diagnosed but I suspect AS & an auditory processing disorder and I homeschool. No offense to anyone else, but I wouldn't put my son into public school if I was paid to. I'm a homeschooler & we're loving it. I can control the environment so my ds' sensory sensitivities don't keep him from learning. the biggest thing is I can introduce social situations more naturally, like when he gets to talk to adults while waiting in the cashier line at the grocery store.


What I'm doing is using books about AS, CAPD, and a variety of other things at home to work with my ds on his issues. Long story short, I've had bad experiences with doctors and ds is still shaken by the terrible 4hr eval he had when 3.5yrs. I've decided to not have him eval'd before his 8th birthday.


There are some books specifically about homeschooling children with learning differences.


How to Get Your Child Off the Refrigerator and on to Learning (Paperback)
by Carol Barnier
Homeschooling the Child with ADD (or Other Special Needs): Your Complete Guide to Successfully Homeschooling the Child with Learning Differences (Paperback)
by Lenore Colacion Hayes
Homeschooling the Child With Asperger Syndrome: Real Help for Parents Anywhere and on Any Budget (Paperback)
by Lise Pyles

Love and Light, Joelle

Homeschooling mom to a 11yr old hydrogen molecule.




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iVillage Member
Registered: 07-24-2003
Mon, 09-05-2005 - 11:47am

Thank you. I put some of the books on my Amazon list to get if the library system doesn't have them.

I'm really uncomfortable with the idea of public school for Kivrin. Part of that is where we live. NM is beautiful, but the schools are largely underfunded, overcrowded and failing. As a former teacher I see the potential for my daughter to get really lost there, and that's not acceptable to me. However, if I went back to writing code for a living we could afford private school for her.

Right now we're still waiting for the doctor to get back to us with what he thinks is an appropriate course of action, so homeschooling is still on the table, as is preschool. Of course I have to put some more effort into potty training if preschool is going to happen. Right now she's really resistent and I'm not even sure she's aware that she has to go until she's already wet.

Thanks again.

Mary

iVillage Member
Registered: 07-24-2003
Mon, 09-05-2005 - 12:02pm

Thank you. I'm feeling better now, but Friday was such a shock, and I really appreciate the support and information. It was so funny that I reacted so strongly to any implication that I might not be the perfect parent. After all I knew I was there for help with my wild child. I hope I didn't offend anyone with the "my fault" thing. I just couldn't get over the idea that the doctor might think I was just spoiling her rotten.

At this point though I'm starting to feel this immense relief that there really is help out there from people who have btdt and books and classes and doctors.....It's like being really really lost and then finding a map~~even if it seems to be in another language sometimes.

Thank you.
Mary

Avatar for finian
iVillage Member
Registered: 03-25-2003
Mon, 09-05-2005 - 12:28pm
Well just do what's best for your son :) hope you enjoy the books

Love and Light, Joelle

Homeschooling mom to a 11yr old hydrogen molecule.




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Avatar for cathby
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Registered: 05-16-2003
Mon, 09-05-2005 - 1:19pm

Hi Mary,

I am sorry to have to welcome you to the "club" of ASD parents. I hope you find it a soft place to fall. Those words aren't easy. Even when you suspected them, or in your heart of heart knew them.

My DS is Jack, who is 4. He's a bit unusual in that he's not a control freak at all. Actually, we've never seen any of those behaviors. His deal is that he's VERY sensory-driven. And there's an auditory processing component, too.

A word on homeschooling: As far as I know, the goal is to have the child with PEERS. It's one thing to be around adults all day, but peer interaction is almost always the area these kids (including mine) have to work on. Your public school must provide a "free and appropriate" education to your DD. This might open up some avenues for you, I hope. I would talk to them and see what pre-school they would provide -- it might be their own, or it might be an aide at a private pre-school. It's worth a conversation.

Good luck,
Cathy

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Registered: 03-27-2003
Tue, 09-06-2005 - 1:04am
I agree that it's worth checking out what is available in terms of preschool. However, in my city, our school system is notoriously horrible. We were offered an integrated preschool, which I visited and I would not send my son there if it were the last school on earth. So I've decided to homeschool unless we end up moving somewhere with a better situation.
Incidentally, Dr. Gutstein- founder of Relationship Development Intervention, which is what we're doing with our son, does NOT recommend placing a child in school until he/she has overcome certain core social deficits first. He compares putting an autistic child in a class with neurotypical peers to saying that a child with dyslexia just needs to read more books. After having tried a typically developing preschool when my son was 2, I have to agree. We even had a speech therapist working with him and a typical peer, trying to get them to interact, but it did no good whatsoever. Gutstein says it's best to work on the relationship skills FIRST at the parent-child level, then later- much later- work on the peers. He says don't necessarily isolate the child, but don't worry too much about peers until later. Just some food for thought. I know every situation is different. If you're interested in learning more about RDI, here's the website: www.connectionscenter.com
Incidentally, we chose not to do ABA (behavioral intervention) with our son, because we found that he learned quite well naturalistically. Every situation is different, though, so I would suggest you learn all you can about different options out there and ultimately, only you know what is best for your child.
Whatever you decide, we are here to support you.