Bad night and rethinking mainstreaming..
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| Fri, 11-18-2005 - 8:16am |
Chase made his first reconciliation last night and things didn't go well. He wasn't disruptive but he just wasn't really there. The other children went up so easily and seemed excited about the whole thing but Chase was looking about the church in a daze and kept asking me to scratch his hands, neck, fingers. I know he was stimming and needed that but it was just upsetting and I'm not sure he really understood what was going on, the big picture I mean.
I started crying right there in church and it was one of those cries I couldn't hold in but fortunately is wasn't an ugly cry. His daddy took him up and Chase was just like a zombie the whole time and had to be prompted to move his feet.
For those of you who are catholic, did your children get the whole confession and first communion thing? It's a big concept and I just think it might be too much for him to grasp and I'm thinking about waiting until he understands what it all means before letting him make first communion. My mother says it can't hurt him to do it now but I just don't know.
Sorry this is long but he goes to a private catholic school that doesn't have many resources and every year I have to educate the new teacher about Aspergers. I'm starting to think he needs to be in a program where the teachers are trained to deal with ASD's but a change now would throw him for a loop. He loves his school and classmates and I like that he can say "God" in school without getting in trouble for it but I'm starting to wonder if that is the most important thing for him right now. Any advice from BTDT moms would be so appreciated. Ya know it was just one of those nights when his "differences" were glaringly obvious and while I'm thankful he doesn't have it worse it still makes me sad inside no matter how much I try to suppress that feeling. Thanks for listening. Vicky

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I can't write much because I have to run, but I so want you to know how I understand how you felt. Personally, I don't see the difficulty in having your son continue into first communion, as I believe all children have different levels of understanding spiritual commitments, even adults (!) and if you believe in a gentle God, he/she won't care in the least...
Actually, our son has never been in mainstream, but instead is in an ASD school. He is very happy there and therapeutically it makes a huge difference that he is understood and helped to learn more appropriate behavior in a gentle supportive way all day long. We are now considering moving him to a more inclusive setting, actually, because he is doing so well, BUT we are considering a private special needs school with very small classes and high-functioning children of different dx'es, more conventional in approach and much more academic.
I can't speak to any mainstreaming, except that the children I know who were mainstreamed have mostly left for other settings eventually. (Since we are outside of mainstream, it would make sense that that's who we know, yes?) I do know there are other parents here with more successful mainstreaming stories, though.
Anyways, I just wanted to respond quickly before running to work with some big (((((HUGS))))) for you.
yours,
Sara
ilovemalcolm
Hello,
I know I have often typed about my experiences with first communion, particularly Michaels. Reconcilliation was better than first communion for us but it was a more relaxed setting in our case. I don't know why it worked out when theoretically it shouldn't have. If I remember correctly we bribed Mike with a trip to the video game rental store after.
As far as understanding, I don't think my aspies still really "get" sin and reconcilliation. It was explained to the kids that sin is "when you hurt someone else on purpose through your words, actions or lack of action". Simple enough, except to an aspie. I wasn't going to let Cait go through her reconcilliation because she didn't understand it and another dad of an aspie was there and he was very wise. He said, god understands, he made them and they were ready enough in his eyes. Fortunately mine are the memorizing king and queen so memorizing the "routine" once on paper was easy.
After Mike's first communion (which was stressful, horrible and wonderful) it took 6 months before he really got communion. I cried more on the day he did than on his first communion day, and that is saying alot lol. The day before at the rehearsal was a NIGHTMARE. He tantrummed, said horrible things and I got lots of stares from the other parents. Many of them knew us and understood, but many of them did not either. The day of his first communion he wanted so much to be just like the other kids. You could see the stress on his face but he did every last part of the ceremony with me and dad sitting right next to him. Unfortunately we had planned a party with lots of new people right after the ceremony. HUGE mistake. We should have at the very least given him the day to de-stress. He ended up tantrumming most of the party and it was embarrassing.
Every week after that I had to go through a whole checklist with mike to remind him how to recieve communion. I had to walk up right behind him in line and prompt him all the way through it. Then one day he said, "Mom, I can do it" and did the whole thing without any reminders. Boy did I loose it that day. It was wonderful.
Now, 2 1/2 years later he said to me a couple weeks ago about how much he loves church and is glad to go. He sings with me all the songs and is nearly the perfect gentleman. Ok, so sometimes he still stims, makes off topic loud remarks, etc. But 2 years ago he would sit in church with headphones on and music while sitting with his head down and rocking the entire mass (except for communion), and had to be walked out 1/2 the time due to really bad behavior.
I do not regret doing it AT ALL at the time we did. So what if he wasn't "ready" by our human standards. He was ready by God's and it has been a huge blessing.
Oh, and I used to take a severely MR boy to church who had recieved his sacraments. I asked the Priest how he could. I was told that the church can not deny sacraments to those who want them. You do not have to meet certain requirements, you only have to desire to do so.
Sorry that was so hard for you. That's the hard part of dealing with a diagnosis of PDD, everytime you are in a situation where there are kids the same age as your child you can't help but compare. But I think sometimes what happens and I know I do this myself is that your so focused on your childs behavior and how different it is that you miss all the other NT kids who have plenty of quirks themselves.I know that when I made my first confession I had no idea what is was about. All I was concerned about was making up some things to tell the priest that I had done wrong.I was very anxious about the whole thing and scared I would forget"my lines". The only consellation was all the money I would get as soon as I made my first communion(LOL).Church is a peaceful place for most although it sends me into sensory overload sometimes. Everyone cramed into hard seats, having to remember when to stand up or down, all the smells and the thing that gets me the most is all the noice(people coughing, babies crying). And I don't know about you but most of the time I'm in my own little world at mass and I hate to admit I never listen to the sermon.I know what you mean when you say your grateful he's only mildly affected.Don't feel guilty for thinking that way your only human!
Keep your chin up, you'll get through it!
Teresa
Thank you all for your kind and thoughful replies. I'm not sure why I'm so emotional about this. Usually I can put a positive spin on things but for some reason this one is more difficult. I think you guys are right about God being gentle and understanding. I actually cried when I read it. Renee, I do remember your stories of Mike now. That must have been draining.
I think we're at a crossroads though because next year(3rd grade) will be Chase's 1st year without an asst. in the class and I'm really worried. I have a good rapport with the school as I'm the PTO chairperson but these teachers aren't trained to deal with Chase's issues and it's exhausting sometimes having to re-educate the staff on how to handle things.
Thank you all for listening with your hearts. Don't know what I would do without this board because unless you've been in our situation it's really difficult to understand how the smallest things can feel so big. Vicky
Hi Vicky,
I am sorry I have not had a chance to write until now. Busy time for us. I am beginning to wonder why I live in Florida with yet another storm coming. It is crazy.
I do not have anything to offer but empathy and understanding. I really admire all you fellow Catholics who responded and have persevered with your children and the church. I feel really abandoned in my diocese. I think if I were any other denomination, there would be provisions that might help us. Perhaps I should have started a separate post about this, but it's related, so I am adding on.
My son is only 3, but I have avoided taking him to Mass because I know he would not do well, it would stress him, and what he did take in would come back as echolalia that might not be understood in some settings. I would not get anything out of it either and it would just make us all unhappy.
But this has meant I have not been to Mass for 2 years. DH is not Catholic, although he did agree that raising Eric Catholic was ok. Before Eric, he would attend Mass with me sometimes and he had always thought it would be nice for that to be a family activity. Until we realized Eric's challenges.
In local Protestant churches there are "Sunday school" type activities for the little ones and I wonder why the Catholic church here at least does not have something like that. Of course I could start it myself, I am sure that is the answer I would get if I brought it up with our priest, but I am sorry, I am too overwhelmed. CCD does not start here until first grade. What are we special needs pre-school moms to do?
I'd love it if Eric could participate, but he just cannot. Our church is a big metropolitan one. I have loved it for its outreach to the community, it built 41 houses for Katrina, but more than once I have felt lost as an individual parishoner.
DH has offered to watch Eric at times so I could attend Mass, but it makes me feel worse. I feel so alone without them and in my family it was something we all did together.
It is so ironic. Now is when I need spirituality the most, but feel it the least. I guess I should just say, I know that God does not care, I know that is right. But while DH is willing to let me go alone, he does not agree with taking DS, bc he knows how much it would upset him.
Christmas is coming and all the holidays in a religious way are so hard for me to reinterpret in my current life setting. I say the rosary a lot now, I figure Mary can understand if anyone does, but I am alone in my bed at night when I do this. I want instead to sing with everyone else to the organ music and feel the joy of communion and one-ness with humanity like I used to do. I don't. I've given it up along with so many other things.
Sorry to be so down and I probably made Vicky feel worse, which I did not want to do. But I really relate to her feeling and can see myself in the same position in a few years. But for me it is not just what I feel Eric is missing, but what I am missing too. I don't know how to get it back.
Thank you for letting me vent. I am about to get on a plane tomorrow to visit my family for Thanksgiving and it promises to be a mine field, although they are very understanding of Eric, just a big family and a small house. I know I should be thankful for what I do have, which is a lot.
I am rambling, but I was just very moved by this thread.
Katherine
Katherine,
I just wanted to write you, because your post hit some strong notes with me. I can relate, but this is not a source of pain for me. I grew up a part of a active church-going family, but find that I cannot handle one more activity on my schedule. Actually I gave up church-going long before becoming a mom, for many reasons. I do understand about loving the community and celebration. I feel, however, that participating in a church needs to be a source of joy and comfort and rejuvenation as well as an opportunity to contribute and it has true for me for a long time that the reality of church-going would be a burden for me both time- and energy-wise and a further drain, NOT a source of rejuvenation and connection.
My faith has nothing to do with this. I do believe in a greater power. I also do not feel that church-going is the only way to commune with that greater power. And these days, my relationship with my husband and son, my involvement with the many other children in my son's life, my work both teaching and training people who have injuries and my theatre work IS my contribution and my community and my celebration ... I figure the higher power knows what I am contributing and sees my struggles. When I need help, I do pray and often help comes, without attending a church service. This is enough (OK, some days barely, but still), and on Sunday mornings, I need to celebrate and honor our creator by caring for myself, my body, my spirit and sleeping in!!!! It is my one unscheduled morning, and a gentle and omniscient God knows I need my time at home with my loved ones and a languid breakfast.
I wonder if you could not celebrate at home, find a few close Catholic friends and create your own "church". My father was a Episcopal priest, and he used to take the sacrament to people's homes who could not attend. Could your priest do this for you every once in awhile, so you could have a family eucharist at home, where your son's sensory needs would also be met? Just a thought. I know that if my dad were alive, he would definitely have done so. The words of Jesus say "When 2 or 3 are gathered together in my name, I am there..."
yours affectionately,
Sara
ilovemalcolm
Katherine,
You have not made me feel any worse. Your love for the catholic church is heartbreaking and heartwarming all at once. I was raised catholic but not brought up in catholic schools and didn't go to CCD and we weren't strict catholics. I am really just learning about the church and the richness it offers. My best friend's 8yo son died this past May and the strength she has drawn from going to mass and the oneness she feels with her son when she takes communion has moved me to understand my faith more.
As far as going to church with Chase, we don't take him to Sunday mass very often. He doesn't enjoy it and I don't want to make him hate it. The principal at his school even said it was fine if he skipped weekly mass with the school kids. They have been very understanding and we are blessed in that regard. My husband and I attend church separately rather than with our 3 children(Chase-8, Ashley-6, Daniel-3) so that we can enjoy the service. I used to feel very anxious alone in church but now I turn myself over to the experience and think of it as time away and a time to reflect. I hope you can find your way back in a form that works for you. Thanks for sharing your thoughts, Vicky
Teresa
Wow, Now I do have to reply to this thread.
I often figure it is good to leave politics and religion out of many topics but it came up so I will explain my thoughts. How they work with ASD kids and church, etc. I love my parish. I realize there are always human problems with every church, but that said I love my faith. However, I am one of these open types to what ever faith works for you. Heck one of my best friends is buddhist, but I will always be catholic.
My kids have gone to church nearly every Sunday since birth. My autistic nephew is christian (different faith) but loves to come to the catholic church. I think the routine predictability is really soothing for our kids. It can be over stimulating sure, but we have done things to help that. It hasn't always been easy, but we have a supportive parish.
First, I will say when we moved to California our first parish wasn't nearly as accomodating. We went around until we found a small community we felt comfortable with. In fact, the first week there we ran into a couple we knew from college and turns out they had ASD kids too.
Our old pastor and new one have been very understanding with our kids. Not all are. I don't do cry rooms because I can't pay attention in there. We sit in the same section each week and if one of the kids is being loud or difficult they are taken outside until they are ready to come back. Of course they have been told that this is moms ONLY time with Jesus and they are ruining that time for me and I don't appreciate it. Ok, so it is the only time I use a mom catholic guilt trip but it works.
I don't like parishes where the children must go to the childrens church during the service. To me mass is a time for family. Though our church does have preschool sunday school all the way up to adult religious education. I helped start the preschool one when Mike was 4 in the hopes he could go. didn't work out, but heck, I tried, lol.
Church for us has meant being ok with kids stimming and people staring. Being ok with mike wearning headphones that others may hear a bit of. Sitting in certain arrangements so that we disrupted as few people as possible. With being ok with telling other parishioners that my children (particularly son) was autistic and I apologize for any inconvenience.
Ya know, God doesnt' care if a child is stimming or listening to headphones. He doesn't care if you have to walk out of church. he is just thrilled you made the effort and is willing to wait until you are ready.
Now for us, my 11 yo daughter gives us a hard time if we miss a sunday. They look forward to reconcilliation (ok that is just wrong! I don't!) There is nothing like the feeling when your child cuddles up next to you and reads along with the song singing with you. Of listening to them say thier prayers or watching them make thier communion.
I admit, I have been blessed, but I also made sure to get involved with the Director of religous ed right away and make sure to make a change for the positive for all special needs kids. We have lots now and our director and teachers are more understanding.
Just like anything else worthwhile with our kids, it takes extra planning and preparation but it is possible and when done it is wonderful. Find a supportive church what ever denomination and start planning.
BTW, last year I saw 2 more boys I know who are autistic make thier first communion and I never would have guess except that I have known both of them since preschool.
Renee
I can't offer any advice on the church issue because we're not religious LOL. However, I will say that we don't ask our son to do things that he'll find upsetting.
After many years of observation, we've realised that most things come to him eventually. It's just a matter of waiting till he's ready to do it. Perhaps you could postpone the church's ceremonies till he's ready? Let's face it, if he doesn't understand it, there's not really any point in doing it, is there?
Regarding mainstreaming, it's not always easy...but in our situation it's been so worthwhile. We're seeing DS copying social skills from the other kids - something that he would not have to opportunity to do in a special ed school. Likewise, he's bringing home such comments as "oh, cool" and today he told me that something was "sick". Our school has a fabulous inclusion policy and zero tolerance to bullying - so the kids are all very accepting of him.
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