Saturday, February 21, 2009

Church...Am I ready for this again?

Tomorrow is Sunday.  When I was single without children it was one of  my favorite days ever. Time to relax, feel the Spirit, feel peace and read.  I get up extra early some mornings just to be alone with the quietness of the house and feel that way again.  Today has not been our day.  I had a pretty disappointing conversation with someone about our kids in Primary.  My daughter's teacher happened to mention that my son was having a really hard time sitting still and being reverent.  She said that my oldest daughter was trying desperately to help him and was pulling up a chair for him to come sit by her.  WHY DID NO ONE TELL US? 

First you should know we have a five year old who has anxiety and sensory issues and is borderline for Asperger's.  She is our mommy figure.  Her brother is 15 months younger and also has anxiety, Asperger's, sensory processing disorder and we are looking into ADHD.  Then we have our second youngest who is 3 and has separation anxiety.  They all sit very close to each other as they are one year apart exactly in Primary classes.  So...I imagine it can be a handful since they have only really ever played with each other and not very many neighborhood kids.  I got hurt over and over again trying to have play dates with their peers.  Moms called to say we should "take a break playing with each other", my children got violent or mean and we just stick together for the most part.  

But back to my story (I have ADD) I imagine my son who covers his ears during sacrament because the music is too loud, kicks pinches and slaps me across the face when he gets overwhelmed there.  We go out in the hall to jump up and down, spin in circle, run around outside or just play in the bathroom water sometimes. 

I am not surprised that he can't sit still in Primary. He and his sisters complain every week that they hate church and don't want to go. It breaks my heart. I  imagine they feel just as stressed and pressured as we do about making it through the three hours in one piece.  I want them to go every week, I think it is vital to our long term happiness.  But I also want them to feel a peace there.  

So I asked this sister if she thought it would be possible to get a special helper called in Primary to help the children who need help.  There are several special needs/high functioning  autistic kids in our ward.  her response was that they don't want to single anyone out. They can get special services at school but they won't do that at church.  I asked if my kids could bring a picture of the family to help with the separation or a fidget toy for the siting still.  Nope.  It's a distraction to the other children.

  I told her about the First Presidency's message on autistic children and making arrangements for them and any other disability at church.  I felt like a nut after talking to her and getting so emotional over some of the comments made about how out of control some of the kids (who are special needs) can be.  

So I came home and balled.  Does anyone else have issues with this? How do you make Sundays enjoyable?  How do you handle Primary? 

Needless to say I called her back when I was more calm and I think she understood a little better. I also called the bishop's counselor over Primary after telling my husband what had happened. So I am hoping progress will be made.  

Why do I still feel like I ruffled feathers and did something outlandish in speaking up?  Why do I feel like people see me as overbearing or a helicopter mom. People have told me they think our kids are normal and we just call them special needs...ummmm, okay?


Anita Nap said...

I'm so sorry. That is rough. Marshall has made HUGE progress in the last few years with OT. That helps. I think before church, they should jump and swing and run and spin..whatever helps them. We have weighted medicine balls we play catch with. I love how you help your kids during Sacrament Meeting. I'm sure it is heartbreaking and frustrating to hear people say you just "call" your kids Special Needs but they aren't really.

I think you have to be the advocate for your children and for other children like them whose parents are too shy to speak up. Could there be a special needs class? We have a lady in our stake who wants to do that. I know there are several people who bring their Autistic kids home after Sacrament Meeting because they can't handle (or the teacher can't handle) the rest of church. Hang in there. You are doing your best. The kids NEED help. They can not sit still right now. Sorry..not possible. Marshall just zones in primary though he's opening up more now. Risperdal has been heaven sent for us.

Happy in Holland said...

This is why I am so happy about the new disabilities website for the church. I hope hope hope that primaries will include it in their teacher inservice and get these teachers educated about what can be done to help. I am in our primary presidency, and I am so excited to tackle this in our ward. If you haven't checked out the website or read the article in the Ensign, it is really great. Spend some time on the site when you get a chance.

Mel said...

I too am thrilled about the lds disability website.

My sis works for the Disability Law Center. For those of you North of SLC she would be able to devote an entire Enrichment mtg to disability awareness. She came to my ward and had 3 moms with special needs kiddos get up and talk about what its like for us. It was a spiritual evening and helped ward members understand what its like to have a child with Aspergers, CP, or Deafness. It would be tailored to your needs of course. Now that people understand more it seems they are more comfortable around my child and the others.

Also, sometimes it is so so hard to advocate for your own child. I am willing to advocate for your child if needed. If you would like me to call the Primary Pres or Bishop for you I will.

Annette Monts Falls said...

Dear Mom, It took years for Clay to be comfortable enough to actually sit in a church service with us...he normally just screamed and screame once he was too big to actually hold and such as a little one. We were fortunate to have a 'cry' room at the back of our church that allowed us to see service and hear it over a speaker but it took so much self discipline and perseverance to keep going back...even when it was my home church and 'family' and everyone knew years upon years later, Clay is an inspiration to all around him in church......he sometimes talks and laughs in church....I am convinced he sees and converses with 'spirits' the rest of us cannot 'see or feel' but for the most part now adds tremendously to our worship services. People fondly scruff his hair and openly speak to him as they come up for weekly communion.....actually Clay is the first one to take communion with a mouth wide open like a baby bird and with that much enthusiasm...we do intinction which is dipping a small piece of broken wafer into the wine (grape juice if requested).....he leads with an example of exhuberance of communion that other attendees then draw from......I know that seems a long time from now for many of you moms, but don't underestimate the value and the lessons that other people learn from watching a dedicated mom bring her children (regardless the individual differences) to church...what an example of Jesus welcoming the little children unto him.......just remember it is the Lord it matters most to and hold your head high Dear One.......they are God's children, very, very special children of God.......and dare I remind folks........many people in church are simply there as 'show'.......not as true children of God worshipping with a correct spirit of love and adoration........who knows, maybe God wants you and your children to 'teach' and be the best 'sermon' to those "Christian worshipers" most of all? love and hugs and prayers......from South Carolina

Melissa said...

You know..I have been down the road you are on. I have found that some wards are just better than others with dealing with special needs kids. I have had to do alot of the work myself to get my oldest son who has autism, to function at church. We moved into our house a little over 3 years ago and I was put into nursery to handle him. I had a younger son at that time that was truly nursery age, but there was nobody in our ward Trevor's age. So we let him be in the class he was more developmentally in line with. He continues to be in a class two year younger than him and it works. The only hard thing is that my 4 year old does not get a break from Trevor at church. But it is working OK. I just discovered the church's disabilities site as well and I am soooo excited for it. I sure hope that it is incorporated into primary teaching. I hope you can hang in there. We have struggled for years. There is simply no easy answer. I tried to get someone called to help Trevor, but they called me instead. Not my idea of an answer. But it worked OK. I am now in nursery for the same reason... becuase Josh needs some one on one and has feeding issues. Nobody apparently felt comfortable with it, so they put me in there. I was a little frustrated at first, but have gotten over it. I really hope you can find some way to get a good solution. It will never be perfect at church and some weeks will be better than othere. But you'll make it!

Ima Mom said...

Okay I feel better! Thanks everyone...not nutty! I posted the churches' disability site on my Parening Partner blog a few months ago when I found it and I think I will re-post it again as well as e-mail it to our bishopric/ primary presidency.
Might as well speak up even more now that we have opened Pandora's box. And Mel we live in Davis County...that would be great. We are gearing up for church again today
;) gotta do it for mommy's sanity.

Jessica said...

I think you are amazing! At the time I had a one year old with nothing wrong except she was so loud at church, that for months I would sit out side of the relief society room, just listening, and most Sundays we wouldn't even last until sacrament. You are doing a great thing by taking your children every Sunday reguardless. They will thank you in the end. Also I think it's great you are reminding some about the message. I have to admit before I had a child with a disability, I did not really understand the difference between poor behavior choices and acting out in frustration...and I was a teacher.

Lori said...

Amen to what everyone has said. And I second what Mel said, give us the numbers and we'll advocate! :)

Luke and Erin said...

That just makes me so mad!! Of all the people in the world your WARD should make you feel great! We struggle in our ward too.
I really hope something happens. This kind of story breaks my heart.

You know they are gonna call you to be the special need teacher now. I guess that wouldn't be all that bad ;)
I really do pray for something to happen in your primary!

Ima Mom said...

Well, yesterday was disastrous. I got strangled, kicked and scratched during sacrament so my husband finally took our two oldest out to run around the front during the last half of the hour. I held back the tears because it won't be long before I won't be able to physically control my son. He is getting big and strong. My little girl had to be pried from my neck and cried at the Priamry door so next week I am sending her with a picture!!! The good news is that I talked to the Bishop and his counselor andthey are reading the church web site SO we shall see...

Mel said...

I'm sorry you had a rough time again this past Sunday. Good for you talking to the Bishop and getting the word out about the website. I hope you see some changes soon.

hayngrl101 said...

I am so disappointed to hear about such ignorance by fellow members. My attitude is that I really don't care what I have to do to get my daughter to tolerate Church... and the play dates, etc. I used to work with a special needs child who struggled with Church (he just turned 3) due to sensory issues + disabilities. As a result, someone was called to specifically work with him 1:1. If ward members are unwilling to fulfill this call, then would you consider having a developmental therapist go to Church with them?

I'm sorry that you're having to go through this. I hope next week is better and that you have positive news to share. Hugs -Kamaile

tiptoe mama said...

You can also contact your local office of LDS family services and request one of their therapists to come give a presentation to your ward on whatever particular issues you need. This might be helpful for your primary lady to understand the nature of the problem. It's all free - a service LDS family services provides.