We had Seth's IEP to introduce all the "players" that will be involved with his Kindergarten experience. He is the first child in his therapy program to start Kindergarten as a 5yo. He is going to a public school that my dd is also attending and it is a great school. The have won the CA distinguished school award 2 years and I have been extremely happy with my dd's experience there. His teacher is a woman that I know a little bit because her son is in my dd's class. I know how she organizes her classroom and how much she really loves kids. She is a little nervous. She hasn't ever had a child with special needs in her class and has no experience with autism. She came to my son's private school to observe and I think she was a little intimidated by the structure and one-on-one instruction. I wish she had been able to see him in preschool but they have already dismissed for the summer. My son's new supervisor is VERY clinical and long-winded so that didn't help but the time his preschool teacher and I spent talking to her after the meeting was reassuring. We got all the services we need and everyone seems very eager to see how he does. He will have an aide go with him but the aide will stay 6 feet away unless he is offering reinforcement (candy)for reaching his commenting goals. I was a little stressed out by all the forms and evaluations that were tossed around because we haven't had to deal with all of it until he was in formal education but his clinical assistant is wonderful and went over all of it with me later on so I didn't look like an idiot in front of everyone! LOL Anyway, for an IEP, it went as well as could be expected. His first day is July 7th so I'll let you know how it goes.

By Beth on Saturday, June 5, 2004 - 08:21 am:

It sounds like you had a first time good expierence. My son was in kdg last year and our first IEP went well. He had water on his brain as a baby. Doctors said that he would be fine by 5. Which seems to be the case. He had an aid last year an hour and a half a day, ld a couple times a week, speech therapy and physical therapy. He did pretty well. Well enough to go to first grade. I am a little concerned for first grade. He tested out of special ed services except for speech. Of course I am happy about it. But also nervous for him to go it all alone. His teacher felt he had the basics but it also concerned that first grade he will struggle with certain areas. I knew there was no sense arguing. I am a social worker and been to plenty of IEP's. The tests just did not warrant the services. However, they said they could test him again in first if he begins to struggle. Which I will keep on top of. So hopefully first will go as well as kdg. Good luck and let us know how it goes. By the way my nephew three is autistic. So it nice to hear that the schools are doing there jobs. I hope he gets lucky when he goes to school. He just turned three and is just starting the whole preschool program.

By Tink on Saturday, June 5, 2004 - 06:34 pm:

This is not my first IEP, just my first with formal education. Until they start K. here, there are different funding issues so there were different forms and a new "alphabet soup" to learn. The schools in this area are great for helping autism but we are a unique area. The majority of school districts and states aren't as eager to offer services. He is with a great therapy service whose co-director is a speech pathologist and whose supervisors are also trained to be advocates for their clients. I love them so much. They don't just teach my son, they love him and I want my son to be loved by the people that spend 8 hours each day and every weekend with us. We are also a little worried about first grade but, if he needs to, he can repeat K. I would rather have him start at 5 and need to repeat than have him start a year late and be ahead of the rest of the class. We were told that my youngest dd had hydrocephelus before she was born so I did a lot of research and if it is caught soon enough there are great chances that they will develop nearly normally. She ended up with no problems. I'm glad to hear that your son is doing so well.

By Feona on Sunday, June 6, 2004 - 07:15 am:

I think that is great news. I would be dancing in the streets. His behavior must be very good. Was he diagnosed with mild autism?


Tell us what you did to help him when he was younger.

By Tink on Sunday, June 6, 2004 - 03:57 pm:

He was mid spectrum when he was diagnosed but he was quickly put into an ABA-based therapy program. It is in a shool-based setting vs. an in-home program where he has an aide that works with him one-on-one but he lunches and breaks with other children in the school so he gets some social interaction. They also have typical children come in for playdates so they have the chance to model the behavior that the typical children display. He is now undistinguishable from other children by 98% of the population. His preschool was observed by a team of psychs. that were told there was a child with autism and none of them could pick him out. Hearing that made my day!
A huge decision that my dh and I made when Seth was diagnosed was not to expect the world to conform to him. We treat him as normally as possible, expecting him to do chores and have responsibilities around the house just like any other child. At first we had to make sure that what we were asking him was appropriate for his developmental age but he could pick up after himself and put his plate and fork in the sink after meals. We make sure that we have his attention when we ask something of him because he is easily distracted but he knows that we will consistently follow through everytime he is asked something. That has been the biggest challenge but has made us better parents to all of our kids. If we say something, we ALWAYS follow through on it.
We have been very lucky that Seth's "stimming" behaviors are very mild and so they don't draw a great deal of negative attention. He also isn't extremely routine-oriented. He expects a routine during therapy so if something disrupts that, that can affect his mood, but since home is chaotic so much of the time, he doesn't have problems with that. Seth also had a 25 word vocabulary before he started therapy so we knew he was capable of language. He has a good sense of "theory of mind" (basically, knowing that other people have different perspectives and likes and dislikes) which is remarkable for children with autism. it means that he has a sense of humor and a sense of compassion. Now there is a chance that he won't qualify for the dx of autism by the time he is 10. We look at this as a mixed blessing. He would be considered typical but wouldn't be eligible for services that he might need. Well, we will cross that bridge when we come to it.
OK, I think I've rattled on long enough. A you can tell, I am very proud of him and all the progress he has made. He works harder than a lot of adults I know. Any excuse I can find to brag makes it hard for me to shut up.
P.S. We tried a few "alternative" cures for autism when he was first diagnosed because we couldn't get him into therapy for 3 months. We tried a gluten free/casein free diet and vitamin B shots but we saw no change and he became very agitated for days after the shots because of the trauma of the shots. The diet was very restrictive for not only him but us as well. If it had shown a change in his behavior we would have adjusted but after 3 months we still didn't see anything. It turns out that there are no double-blind studies done with any alternative therapies and most of them are just based on parent testamonials. The ABA-therapy worked but even then there needs to be a huge commitment on the families part to support what the therapy is teaching. OK, I'm really done now. Feona, did you really plan on opening that can of worms?

By Pamt on Sunday, June 6, 2004 - 07:09 pm:

Cori, your DS is truly a success story and you have every right to take pride in him and to give you and your DH a big pat on the back as well. When I work with autistic children I tell the parents that it is soooo important to make their children adapt and function in the real world---not to allow them to self-stim and isolate themselves. Because the kids usually cry and get very agitated, and often aggressive, when "forced" to interact a lot of parents don't follow through at home and their kiddos often don't make much progress . I have a little boy I have been seeing for 3 years who sounds very much like your DS, but not quite as advanced. I have fought alongside the parents this whole past year to get him mainstreamed and this next school year he will finally be in a reg ed 1st grade class. He is very smart (knows letters, can write, tell elaborate stories, beginning reader), but he still has some social issues and articulation problems. All in all pretty darn good for a boy who was totally nonverbal until 4 y/o.

By the way..impressed with your knowledge of "theory of mind." 2 yrs ago I took a class on that subject and it is very interesting. Have you ever heard of or read any of Temple Grandin's stuff on autism? She is an autistic adult with her Ph.D. in something to do with agriculture and speaks out about autism and how to help your child succeed often.

Yay!!! Congrats to you all!

By Tink on Sunday, June 6, 2004 - 07:32 pm:

Pam, thanks! I have to admit my dh and I are proud of ourselves, too. It's not always easy to force him to do things that he doesn't want to do but it is what is best for him. Seth's biggest issues are with using his language as often as a typical child and articulation. Alot of his articulation problems are usual for his age: beginning, medial, and final s, r, l, and some th. We have been working on the s for about 6 months and now it is just generalizing it to his everyday conversation. Congrats on the work with the little boy on your case! It's never easy but having the support of someone like you can make a lot of difference.
Temple Grandin is wonderful! I have read "Thinking in Pictures" several times and she spoke at a conference nearby just a couple of months ago. I wasn't able to see her but I heard she was incredible. MY son's therapy supervisor saw her and said that Seth has the potential to be more personable than her, but that her intelligence and her drive is unbelievable. Since Seth's strength seems to be theory of mind I have looked up as much as I can about it. I want to stregthen it even further, if possible, because it is what will make him fit in with society and make him a caring, loving individual. Again, thanks, Pam. We just had a battle about playing with the neighbor's children so I needed a pep talk.

By Gammiejoan on Sunday, June 6, 2004 - 09:23 pm:

Cori, I just want to complement you on your obvious efforts to see that your son receives everything he deserves. It really "pumps" me up to read about how you are doing everything you can to make sure that your son has the best possible chance to attain his full potential. I just wish that all children had a parent like you.

By Tink on Sunday, June 6, 2004 - 10:10 pm:

Thank you Joan. I really do try to do my best, but so much of what we do just seems like common sense. I recently read on here, though, that common sense isn't all that common. That struck me as very true. It drives me nuts to see what some parents are doing to their kids because "it is easier." Yeah, easier in the short-term but what are you setting your child up for during the rest of his life? I want to make sure that Seth is able to do all he can. I have heard some people say that autism creates a person's personality. I don't see it that way for Seth. It seems to be an obstacle for us to overcome in order to uncover his personality. Maybe that is why I fight so hard against it.

By Beth on Monday, June 7, 2004 - 08:32 am:

I was just curious how old your son was when they started this kind of therapy? My nephew is only three. My sister may know about some of this stuff but I am not sure. I know her doctor told her not to expect the school to do much for him. Maybe that is just in her area. I know from what they have read. It seemed like autisic kids need much more therapy then they actually get. You had to be able to pay for more which my sister is not able to. She is a newly single parent. Your story sounds encouraging. Just a couple of more questions. Your son sounds higher funcitioning then my nephew. However, unlike a lot of autisitic kids. I see my nephew trying to talk and interact with other people. At times he is to aggressive, because he is trying so hard. Now grant it he won't sit on you lap long. But he allows hugs ect... But he is very hyper. To the point that it disturbs his sleep. I guess I was just curious if your son displayed any of this and how you worked through it. My nephew says very few words but is learning to sigh a few.

By Tink on Monday, June 7, 2004 - 11:21 am:

He started when he was 3 but, in this area, they will start 40 hours/week of therapy as soon as they are diagnosed and, for some kids, that is as early as 18 months. CA's thinking is that the younger they are, the smaller the gap in their development compared to typical developing kids. I have heard, over and over, that this area is unique in the funding that is available. The most progress is shown when the child receives at least 35 hours of one-on-one therapy per week. I don't know much about funding since it is so easy here but if there is a regional center in the area they might help with this. Your nephew is also eligible for federal and state disability which might help pay for his instructional aides. The most reasonably priced aides are college students but training them may be your sister's responsiblity. Each state and area within the state is so different.
If your nephew is attempting to communicate, that is a huge step in the right direction. My son never had big problem with aggression, he just wasn't aware of what pressure was appropriate. He has recently learned how careful he has to be when holding small animals. Some children with autism have trouble knowing where their body ends and the other object begins. Others have trouble realizing how hard they are touching something because of sensory issues. My son allowed affection, too, and this is a very important step and can make the therapy experience a lot easier. My son doesn't have any signs of hyperactivity but ADHD has been shown to be more common in children with autism. There is medication available. My dh is on Strattera which has been wonderful. It is not a stimulant and is approved for children although I don't know how young. Sleep problems are also common. My ds had night terrors every week for a couple of years but I think they may have been related to the stress of not being able to communicate. He has only had 2 in the last year and that was when he was VERY tired.
Signing is a wonderful step in the right direction. Is your sister aware of the PECS system? Picture Exchange COmmunication System is a way for nonverbal kids to talk. THey have a group of cards with pictures on them. Some are labels of foods, activities, and functions. Hungry=a picture of a child eating, Potty=pic of a toilet, etc. This can be taught fairly easily if the parent is consistent. Find something like a cup that the child wants a lot and show him the picture everytime he gets it. Then show it to him before he gets it. Then show him it and another and make him touch the cup before you give it to him. Then put it in his pocket and make him give it to you. There will probably be meltdowns on the way to it working but he will catch on quickly and it can make a big difference. It works well because it is so immediately rewarding. Positive reinforcment is so important. As callous as it sounds, it is a little like training right now. If they do something you like, reward them. If they do something you don't like, immediately let them know that it isn't OK and give them something to do that is alright. Let me know if you have any other questions. As you can tell, I love to talk about this and I'll answer anything I can. If I don't know the answer, I'll do my best to find it. Good luck to you and your sister.

By Feona on Tuesday, June 8, 2004 - 07:10 am:

I thought we got alot of therapy here in New York. But I do believe California beats us hand down in treating autism. I used to organize 7 hours of therapy at home for my son. It was very hard. I can't imagine what organizing 40 hours of therapy must have been like. Kuddos!

After reading what you said, I would move to were you live if my son had autism.(Of course I would ask you a million questions first.)

We just had our meeting yesterday and got really alot of therapy. (About 20 hours a week of Seit - speech and ot) Ds doesn't have any type of autism or ppd. But even kids without autism get placed in inclusive classrooms in kindergarten too.




The supervisor thinks he can really get ds in regular kindergarten (maybe with a aide or maybe not) Ds has been doing really well in the last 4 months since we changed preschools. I never had a doubt he could go into regular kindergarten, but you know we always think the best of our kids and sometimes are rudely shocked if things don't work out.

By Tink on Tuesday, June 8, 2004 - 08:10 pm:

We are so lucky to live in this area. Seth's therapists get phone calls every week from parents all over the WORLD asking of they have openings and how long the waiting list is. They were the only program in our area with an opening when he was diagnosed. Talk about a sign from God! They haven't had an opening without a waiting list since then. They have recently expanded the school and are now able to service 24 students instead of 14. Yay!
I found out today that his K teacher is teaching in the afternoon and that won't work for his therapy schedule. So now we have to look at other schools in his area or think about starting him in a Pre-K class at a private school. I am really disappointed because there are no morning openings at all at our home school. The other school is much smaller and with a lower income student population. There is a lower English speaking population there also which is a problem when Seth needs as many language opportunities as he can get. This will also mean that I will have one child on a traditional schedule and one on year-round. Difficult to schedule anything. I'm feeling very discouraged right now. THis was not the news I was hoping for.
Feona, I'm so glad to hear that your son is doing so well. I'm still having trouble keeping everyone and their kids and their kids' disabilities straight. Why is your son receiving services? Is Seit speech and ot combined?

By Tink on Tuesday, June 8, 2004 - 08:19 pm:

Feona I just saw your other post about your son's speech testing. Congrats!

By Feona on Wednesday, June 9, 2004 - 06:11 am:

That is discouraging... As long as you have to pay for school anyway... What about the catholic schools? I hear they are very disiplined and orderly. Very good for kids with sensory issues. But maybe that wouldn't work because you need the aide. You wouldn't be able to get an aide in a catholic school in New york...





Does they have an intergrated class for him? Maybe that would work?

Also, we aren't jewish, but their schools can be very good. We love the one we are in now. My sister in law has great things to say about a jewish school she sent her
kid to too.




I am thinking about a temple school which does kindergarten for the less mature 5 year olds. (They end up doing better than the kids who went to regular kindergarten)

Ask the district for some recommendations. That is how we found the school ds is in now. ( Actually they called in a special favor to get him in there in the middle of the year)

Listen carefully to any negatives. We didn't read between the lines at what they were telling about one school and it was a disaster.

Listen for things like, "Some kids don't do well there" _ Subtle things...

Seit is special ed teacher who shadows like an aide. A seit teacher has a masters degree in special education. They do direct teaching too. They pull out for special lessons. She uses fidgets and special cushions to help ds sit still in circle time. He has sort of has a hard time sitting straight - likes to lean on others type problem. We also use a weighted vest for circle time. I got a cute on on line at otvest.com

Ot we go to a sensory gym. The seit talks to the ot person once a month to get ideas. Behavior problems can be a sensory or muscle problem. Visually distracted is a sensory problem. The sense people forget about in ot.

This is what they say about my son. Academic aren't going to be a problem for him. Is is social... Main thing is social. So I try to remember to focus on social. I try to forget about academics.

By Tink on Wednesday, June 9, 2004 - 10:58 am:

Academics aren't going to be a problem for Seth either. Social is definitely what we are working on. We are looking at 2-3 Christian schools. The Catholic schools here are big on religious study and we aren't Catholic. And I don't know if Seth would "get" the religious study at this point. He has some trouble with anything that isn't concrete. Seth has some minor sensory issues. He likes whole body pressure. The weighted vest sounds like something he would enjoy. He used to climb between the mattress and box springs and now will ask me to hug him really tight when he is getting emotional. He also had some balance issues that have been cleared up in therapy, didn't like uneven surfaces and climbing stairs. I think this may have been visually related also but I don't really care since it has been taken care of. So far the school district hasn't been much help. Just kinda threw out that "Oh yeah no openings in AM kindergarten. Let us know what you want to do" kind of attitude. Very frustrating since I don't know what all my options are. Oh well, it will work out.