The Pastor called last night... | Autism PDD
I know with our son that he does better with kids younger/older, but not his peers initially.
I feel for you, but good for you for going even though it's hard. We go every Sunday too. Honestly, I can't believe someone would get the preacher involved. It sounds like a waste to me. I have to give the people at my church credit-my son's autism is no secret, and if someone has a question they just ask me. If people are curious, I'd have an autism awareness night and explain things. Verbal or non verbal kids on the spectrum have a hard time communicating, and sometimes if's easier to be physical. BUT IT IS NOT VIOLENT IN ANY WAY.
Also, if I were my son's aide, he would act up more too. Is there someone you could train and trust to help your son? I had many vounteers, and I needed a break Sundays.
The bottom line is your congregation should be a family. It shouldn't be you guys getting singled out. They should feel the need to help ypur child. There were times my son cried through the entire service, and I had to be in the nursery until he was 4-5. Now, he sits like a champ and knows no matter what he does we are not leaving until mom or dad says so. Don't worry, your child will learn too. My ds loves church now!
[QUOTE=zsdad] He said that he wanted to help usfigure out the best way that they can make Zachary's Sunday morning
experience better.
[/QUOTE]
Sounds like they are wanting to help you...some people just don't want to talk to you personally about something private so they go thru the pastor, etc. There will be talk...its just a fact of life and the more people you educate the more they can educate the newbie too. Congrats on the dx!
Thank you all for the advice. The links were very profitable. I found somewhere about a PALS program that is being used at a church; basically an education-type program where people are trained to help ASD kids.
Also shenom: thank you for the book resource. I will take it to our meeting tonight.
MiMom3: "I can't believe someone would get the preacher involved..." You don't know what wonderful places churches can be. I have been in church music ministry for almost 25 years, and one of people's favorite past-times is circumventing people and going to the pastor because they don't have the courage to address the person directly. That's a whole 'nother ballgame, let me tell you. There are no worse politics than church politics. I am seriously going to request that someone who is willing/experienced to be trained to be my son's aide. It is making my wife really depressed when he acts up consistently with her. I really like your "autism awareness night" idea.
I have come to the conclusion that the church folks need education about ASD. I am thrilled that they are willing to help us out.
Do they have Sunday School Classes that are different than the nursery? How many kids are in the room? Maybe it's too crowded.
We send my son to the regular Sunday School Class for his age and he does well. My son is an occasional pusher and I have found that it is sensory related. We do deep pressure input exercises prior to an event that might give him overload.
I just gave the teacher and aide some suggestions to help him. Such as, use simple language. His class is very small, so that helps.
If you're in FL - CARD reps will come out to "school" your church staff, etc...get the "word out" if you will....sorry not meaning to mock. Your dw needs a break...I've learned that when Payne gets used to people (especially the parental units) he will challenge them, but submit to a newer person...KWIM? Jaden does better in church classes if I am not in there with her. I tend the babies in nursery while she learns well from the other teachers. I am a church organist and don't go to church with my wife, which is a problem. I can't afford not to have my church job. They do have SS classes different from the nursery - the nursery is just for the 15 minutes that Z can't sit through the sermon at the end of church. The number of kids varies in the nursery. It can be crowded and noisy at times. Right now, Z is in SS class with 2-3 yr. olds, even though he turned 4 last month. My wife feels that he can't handle the 4/5 curriculum. Honestly, I wish he were with his agemates. I think that is important. But again, I am not there on Sunday morning. I just wanted to add my children always act up the most with me and DH. When we are not in the picture I get all kinds of compliments about how well behaved they are. Sometimes I wonder if we are talking about the same kids. Having someone other than you or your wife would probably be a very good idea, and maybe having that person over to your house so DS can get to know them in his own environment first might not be a bad idea either. That works well for my kids.I think it actually seems like your church is actually trying to help you even tho they got the pastor involved, at least him being the head of the church will be clued in on whats going on too which i think is great if hes not being judgemental anyway.
I dont remember who said it but i agree that your wife being your sons aide probably isnt helping the situation! Ive noticed with my son that he behaves so much better for other people (sometimes anyway!) than for me altho behaving as much as can be expected from him anyway so maybe you could get someone else to be his aide? Might as well try it and bring it up at your meeting.
We were having trouble at sunday school and actually couldnt even attend church for a long time cuz my son would kick and scream and not even go into the building but they let him bring some of his toy dinosaurs oneday and that got him to actually go in the building even tho hes was just silently clutching his toy and not participating and now he actually likes going.
I hope your meeting goes well and you can get everything figured out! You both sound like wonderful parents for not giving up and not going period (like us for a while lol) and its great your church is comming together to think up a strategy to help. Keep us updated!
It is hard and has taken a LOT of time and consistency. One thing that really helped us was moving. I know that sounds strange, but our old church was "in the round" and there must have been something about it that set my ds off (we had the same experience this summer in a different church that was "in the round"). He does totally fine in our new church - much, MUCH better than his little sister!
I am going to look at the book on amazon. Thanks to the person who posted that!
It's a sad truth but I don't attend church for this reason. I've been turned down by 4 different churches because they don't know where to place my daughter. Another 2 churches offered to allow one of their youth to stay in my home and watch my daughter so that I could attend church - thus keeping the youth from attending (who probably needed it more than I do!)Good luck on your efforts. I do hope there is a solution that works for all involved.
Hi. We got our son's dx on Monday. I was doing well yesterday. Then
around 6:30 my wife's pastor called. He said that he wanted to help us
figure out the best way that they can make Zachary's Sunday morning
experience better. Apparently (this prompted the phone call) Z pushed a
kid into a cupboard last Sunday while he was in the nursery (he really is
too old for the nursery, but he is in there for a few minutes during the
sermon - at the end of the service). He is not normally a "pusher" but I
bet that some kid got too close to him and, not having social cues, Z
pushed the kid.
He wants to meet with us tonight, along with the Sunday School Chair (a
close friend of ours) and the Christian Ed people, whom I don't know.
Here are my questions:
1. I need to emphasize that there can be no more of the "let's call the
pastor because that weird kid pushed my kid. Take that weird kid out of
the nursery" phone calls. Where can we put my kid for that time?
2. My wife is Z's aide for Sunday School. He gives her a hard time - he
yells, screams, carries on when it is story time. Any ideas about what to
do? Sunday afternoon is terrible at our house because my wife is tired
and frustrated. We don't want to pull him out of Sunday School.
3. How do you people that go to church handle the Sunday morning
routine with your kids?
I wish I could help you out on this one...we don't attend church. I know we had a post about this not that long ago though - someone inquiring about special sunday schools...I'll see if I can find it.
here we go...don't know if they'll help, but...
http://www.autism-pdd.net/forum/forum_posts.asp?TID=20176&am p;KW=church
http://www.autism-pdd.net/forum/forum_posts.asp?TID=19276&am p;KW=church
http://www.autism-pdd.net/forum/forum_posts.asp?TID=18080&am p;KW=church
http://www.autism-pdd.net/forum/forum_posts.asp?TID=17863&am p;KW=church
http://www.autism-pdd.net/forum/forum_posts.asp?TID=14024&am p;KW=church
http://www.autism-pdd.net/forum/forum_posts.asp?TID=10381&am p;KW=church
As you can tell = you are not alone.
our church actually wrote a book on how to go about it. Our program is
absolutely fantastic and has worked extremely well for all the kids who
attend. The book can be purchased on Amazon. Here's a link:
http://www.amazon.com/Special-Needs-Ministry-Handbook-
Disabilities/dp/1419665472/ref=pdbbssr1/002-0097405-8298465?
ie=UTF8&s=books&qid=1191802324&sr=8-1
You may need to do a "cut and paste" with the link since it's rather long.
Currently my son is in the "younger" classroom (ages 4-6) with 4 other
boys with autism. He has a 1:1 adult shadow as well as one NT peer
assigned to him each week. It's a reverse inclusion situation. They have
free-time, do a craft, listen to a bible lesson, then have music at the end.
He absolutely loves it. Because he's doing so well overall, we're getting
ready to move him into the regular classroom (inclusion) and he'll also
have an adult and peer assigned to him there.
Hope this helps.
Well Hope I was probably one of those people until less than 3 years ago! And I have my MSW. I did not realize what a spectrum it is. Looking back, I am sure there were kids I worked with who now would be diagnosed as HFA or Asperger's. But, back then (mid-90s) we weren't diagnosing that much (if at all).
Why would people educate themselves about autism if it hasn't affected them? I'm a little ashamed to admit that I don't educate myself about all kinds of disabilities - and I used to be a social worker! People are kind of compartmentalized and only educate themselves about things they think are important and/or that affect them.
However, if these people you are talking about are people that are relatives/friends of yours - well, they SHOULD be at least trying to educate themselves about it. But, until you personally go through it - well, you probably listen to the news, listen to Jenny McCarthy and only get part of the picture. That is why we (as parents of kids with autism) need to educate people as much as possible. I'm being a hypocrite here because for the last 5 months I have been mostly silent about ds' autism as I haven't yet decided what I'm going to do in our new community. I just don't have a feel for it yet.
It is sad that people can't be more accepting/tolerant of our kids. In our old church, I know parents were told that the church was willing to work with them, as long as the parents basically did all the work. I know a guy who has had to teach every single religious education class his son has ever attended in order for his son to get religious ed! Very sad.
[QUOTE=Payne's Mom]I know with our son that he does better with kids younger/older, but not his peers initially. [/QUOTE]
Yup! Same here. Nick is great with little babies. He ADORES infants. He is also good with adults once he gets to know them. But kids his own age? Not a chance!
It will never cease to amaze you how totally uneducated people are about Autism. My son is almost 7, was diagnosed developmentally delayed by 11 months & Autism by 2 - so thats almost 5 or 6 years and I still find out that people in our lives have no clue.
At that age, we didn't go to church. They even had junior church for kids 3y-9y (2 seperate classes). But.....the kids had to stay with us until the music was over. Which was the first 30 min!! Didn't happen. He would last 30 sec!! So--we stopped going. We did go to Sunday school. Much easier. He would be in the class the whole time. At that age---they would have to call me for a meltdown or I would just hear him scream and go anyways. It really didn't happen very often. They would keep him busy. No aide, just the teacher and helper. When he didn't want to participate---they would allow him to do what he wanted to prevent conflict. The older he got---the better he is! He is 7.5y now and we haven't been called since about 5-6yo. But he is also HFA. Very mild.
Our church is used to "different" kids. One of our pastors has a classic autism 6yo. Some of the people in church trained to be his ABA therapist. We actually have about 6 ASD kids---that I know of.
Even now--we don't go to church very often--just Sunday school. We are lazy!
tzoya, I agree with you, but education about the impulses also helps. I went in to my dd's class last April, because she frequently talks about her brother. She was telling me a lot of kids "just don't get it." The first thing I asked was who knows someone with autism. A little girl spoke up and said a neighborhood boy lived down the street from her. I asked if she played with him or anything. Her only experience with this boy was him running by her sister and 'stealing' her ice cream cone. The girl looked upset just talking about it. I said that seems like he was being mean doesn't it? But let's imagine for a minute that you couldn't talk. How would you tell someone you wanted an ice cream cone too? Someone said, I would point. I said, What if you couldn't point? Someone said, I'd get someone to help me. I said, What if they had no idea what you wanted? Finally a kid shouted, I'd just get it myself!! I said exactly. That is what that boy did. The girl looked like the light bulb went on. I said don't feel bad that you didn't understand. That's why I'm here. We all need to work together to understand each other, and that boy needs help learning better ways to tell people his wants and needs. And I made sure to point out he wants a lot of the same things they do. I think we need to teach people to work together. I'd hope that little girl goes home and tells her sister that 'different' boy down the street isn't mean, he needs help communicating! Knowledge is power. Church IS a problem. We've taken our son since he was 2. He's 16 now and it was worth ALL THE PAIN. The people WANT to be understanding, but are not. I have never been able to fix this. And there is NO WAY you can prevent people from calling the pastor to "complain." Your wife has to develop a tough skin and learn how to better handle your child. She needs to be AT HIS SIDE or you need to get someone else who can be trained to do that. Parent training can be written into the IEP so that you and your wife can learn how to put BIPs in place for your son outside of school. You want an knowledgable adult at your son's side in Church not only because it is simply unacceptable for him to touch other kids, especially aggressively, but it's also unacceptable that the situation has developed so that he feels he HAS to be aggressive. Gotta nip this in the bud. You don't have control over the people in Church and never will. But you DO have control over yourselves and your son. Once you figure out what is going on, you can put together a sensible system to help. Educating the people at church is good, but I have not found that it really solves anything. Those people have their own issues, as we all do, and they are not likely to put their needs behind yours. This is tough advice, but it comes from someone who's BTDT and never really found a total solution, but is glad that we have tried and continue to try.
The meeting went very well. The pastor, the lady in charge of the
nursery (a good friend of ours), and the Children's Ministry leaders
(new to this church) were there. They are husband and wife.
The wife seems to have a working knowledge of the spectrum as her
daughter is severely ADHD, so on some levels she has been there.
Basically, we came up with the following:
1. Zachary needs some place to be for those 15 minutes that he used to
go to the nursery - where this place is, we are working on.
2. He will have a trained person to help him in Sunday
School. Who this person is, I don't know yet. Mommy said
she doesn't mind being in Sunday School with him as his aide, but it
makes for a hard Sunday afternoon. (Thanks for the toughlove,
tzoya. It was hard to read your message, but it's starting to
sink in now.)
3. Having an autism awareness night is a possibility.
4. I did mention firmly that I will not tolerate not knowing
directly when there is a problem with my son. We need to know
when something happens, from the people involved, and not
third-hand. The pastor kind of looked at me funny when I said
this, but I think the point was made. Will it change
anything? Probably not. However, he is on notice that
I won't tolerate nonsense. I have been in music ministry for 25
years, and am so used to hearing from pastors that there has been a
complaint that the organ is too loud/soft/hymns too fast/too
slow. My response is that if someone has a complaint with me,
they need to approach me directly and not through someone else.
Mysteriously, the complaints and the anonymous letters stopped.
Take care, and thanks for the great response.
zsdad
Glad that it is working out....or in the process. I think it is a fact of life that people are going to talk to the pastor w/o talking to you just because they aren't comfortable asking you questions or comments ...
and an autism specialist trains the volunteers so they understand autism. They also have you fill out a packet of information to give them so they can know what specific issues your child has, what " triggers" them to have a meltdown etc, what social issues they have - (not wanting to be touched, loud sounds etc)
it's very detailed and that way whoever is dealing with your child will UNDERSTAND and know how to handle situations as they arise. They also have a paging system so that if your child is freaking out they can just page you in the service.
If need be they even find a person to be your child's specific aide during sunday school, and they claim if it's not a good fit right away they will keep trying till they find someone your child connects with.
Does this sound unbelievably amazing to anyone else??
I was FLOORED when I found out about their program. I grew up in small churches all my life, and you know that small churches don't have the money to do stuff like this. They don't have enough people, they are just lucky if they have a teenager in a room of 20 kids in a nursery !
This church is much bigger than what I'm used to, but I like the church a lot, and not just for their sunday school program 
I think it's very positive that the pastor called you! I think he's showing you he understands there is more to your child pushing than " naughty behavior" and he wants to understand
Even though your church may not be set up for a program like the one I described above, perhaps just talking to the pastor and clearly stating and writing down your child's needs can start the ball rolling.
I'm sure you're child is not the only one with special needs
Good luck!
What a terrific story...thanks for sharing that. It really helps to put it into perspective with kids.
I have avoided Mass and putting my kids into CCD because of their issues. I signed them all of for CCD because my Autistic son has declared he is an Atheist and I want him to have a relationship with God even though I have struggled over these years to maintain mine. My kids are high strung and I was worried that nobody would be able to handle them, heck we don't even have babysitters.
There first CCD class is this Sunday and I am so nervous. I managed to get them into a class that is small and for my Autistic son he will be with a husband/wife team that are retired teachers as well. They also have 1 other high functioning Autistic in the class.
I have no advice just lots of prayers that a solution is found so that Church is enjoyable for you all. Its so hard to attend a service when you are sitting there anxious wondering what is going to happen next and you want to protect your child from ignorance and discrimination too.
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