Any other Pastor's wives out there with an Asperger's child?

Sarah - posted on 04/14/2011

Julie,
That is one of the things I have been struggling with lately....do I need to be specifically devoted to he and my other son in order for them to suceed as far as Sunday School and Wednesday night services go? There is not another person to do it and when things are "on" I really enjoy it. I have also noticed that when it is just me and my two sons (without the other kids) we have a lot of fun.
It is really ironic that I am having such a frustrating time at these two times of the week, since I was up until a few days ago thinking about finding resources to open up an autistic after school / summer care facility. We don't have one in our area and I KNOW I am not the only one who has to work in the summer ;) Random eh?

As far as " a LOT of the issues are not the fault of the kids- but rather the adults dealing with them" ----Totally agree! I have to keep reminding myself that he does not fit into the boxed photo frame people expect children to be in. We have a lot of battles when I am trying to put my little 'Jack in the box' back in the box.
BTW, this conversation has been very enlightening. Thank you.

Julie - posted on 04/14/2011

I am not a pastor's wife, although it would have been nice to have been. But I am raising an autistic daughter alone. Over the past few years, we have contact with several churches - the one I've been going to for most of my life where I still do non-sunday ministry for and my daughter attends girls brigade an once a month goes to kidsclub; my parents' church where my daughter goes to sunday school, their kids club once a month and until recently, their soccer club; my daughter's school's church where she obviously attends school as well as their kids club once a month and after school activities; and finally a new church where we have been attending sunday services for the last 6 months after my old church stopped offering sunday night services (I need to attend night services for a combination of health and personal reasons).

The huge difference of attitudes of people towards my daughter in the different churches is amazing.

At my old church, both she and I were condemned terribly and people just couldn't handle her. These are people who have been working with kids for decades.

At my parents' church, it's the total opposite - they total reach her in a way I've never seen before. They have taught her biblical concepts that "normal" kids her age often struggle with.

I am a firm believer that when it comes to kids with autistic spectrum disorders, a LOT of the issues are not the fault of the kids- but rather the adults dealing with them.

Jesus made it clear we need to become like children to enter the kingdom of heaven - and older kids with autism aren't that much different from younger kids in how they see the world - a concept many people should think about.

Sarah - posted on 04/14/2011

Wow! What an amazing ministry you have! You are right that there are a myriad of emotions one goes through having an autistic child.
Last night was so hard. He was running around the class being very disruptive, being very disrespectful and then doing his usual, "you are a horrible teacher, nobody likes you, nobody is learning anything, why don't you just quit while you are ahead". I couldn't help myself...I asked, "quit while I'm ahead of what?" I had to chuckle when he got so fruterated because he couldn't think of what that saying actually meant. It was so appropriate becuase my lesson was on "compassion" and everybody in the class understood what that meant due to the actions of my little guy. I have two kiddos and I think the other has ADHD and so he was really just as difficult and they were feeding off of eachother. I was crying on the way home and my son said, "mom, please don't cry, I am feeling empathy". So, I think in the end he understood my compassion message.

Julie, I agree with you. Most of the time my little guy is Hillarious - as we share the same type of sense of humor. I can't wait to see the direction he chooses for his life and the amazing things he will be able to learn and accomplish. He is very cuddly and still needs his mommy. I think he will always be like that and that is one of my favorite things about him. That being said, this support group is one of two that I have. If I seem overly negative I apologize and will try to balance my posts more evenly with the funnies and the tears. I love my little guy, but the women who are willing to share their stories of tears are encouraging to me because I am not alone, that I am not a bad mommy because I feel like it is hard. It is difficult to have an asperger's son. But you are right - they are gifts.

Irina - posted on 04/13/2011

Dear ladies, I've been blessed by reading all your posts. In Russia American kind of churches are considered to be cults and the only "right one" is Orthodox church which is a lot like Catholic church. So I met a lot of parents with special kids like ours and they were thrown out of the Orthodox church because their kids were "cursed for their parents' sins". God opened a huge door of opportunity to serve parents with autistic children. I think unless you have an autistic child it's really hard to serve these families. Now I understand their pain and what they're going through - things that other people wouldn't. So may be now I don't get to participate in important :) ministries but I'm able to encourage and pray for parents with special kids. May be it's one of the reasons why God gave me my son.

Julie - posted on 04/13/2011

It sounds like everyone sees aspergers as some kind of bad things, to be endured, something to be upset by.

I would like to offer an alternative viewpoint- we are all unique. God made each and everyone of us different. Even "identical twins" are ultimately different.

There are so many wonderful things about kids with aspergers - their forthrightness, the way they are not manipulative or deceitful, the way they say their mind, they don't hide behind false niceties etc etc- if everyone has a little bit of aspergers, the world would be a much nicer.

Rather than look at your child having aspergers as some kind of curse, rather look for the many blessings your child's condition brings to the world :)

Joy - posted on 04/13/2011

Linda, you asked how many churches would put up with the pastor's kid cussing. My answer is as many as are in love with Jesus Christ. My heart aches for you! I love the post from the gal in Russia. Her idea of having a "back-up" person to step in is genius! I don't know if you have shared with you church about the Asperger's, but it is a great idea, even if you just have a trusted few, who can walk with you through this. Your children aren't your downfall- they are a gift from God. Now I'm having a hard time forgiving the person who told you that! Ugh! What are people thinking! God bless you and your family Linda. Hey, the church already knows you aren't the perfect family. That sounds like a really good place to minister from.

Sarah - posted on 04/13/2011

Linda,
Thank you for your post. Sounds like you and God have been through a lot together. Someday God and I are going to write a sermon about "deals with God". It's going to be about how we as humans believe that if we do a certain something, that we have an unspoken agreement from God that He will do what we think He should... my personal example stems from my little gift. During my pregancy with him, I did everything "the experts" told me to. I quit caffine, I only took the occassional tylenol...just everything I could to protect the little one in my tummy. Then when I found out that my little guy had Asperger's I was crushed. I felt like God didn't keep up His end of the deal. What made me think that God and I had such a deal? It has helped with the coping with different situations.
Thank you for reminding me to pray for a calm spirit. I think that will help when we are in the middle of class and he starts acting out.

Linda - posted on 04/13/2011

Dear Ladies - I am not a pastor's wife, so I do not know what it is like to always having to be on "stage." I agree with what the others have said about seasons of life. Right now, our children have to be our top priority.
As far as being mad at God, well I have been there too. I was widowed suddenly at 32 and boy was I mad at Him! But He sustained me and brought me through the darkness. Occasionally, I still get irritated at everything I have been through and I'm only 45 (first husband died suddenly in front of me, both of my parents and one of my brothers have died and I have a son with autism.). I try not to ask what is next, because I know He still will sustain me!
We pray every day for a good day with our kids and when Andrew is having a particular bad day, we pray that God will calm his spirit.

Julie - posted on 04/13/2011

My only advice is do not ever be ashamed of your child's asperger's behaviour.

Too often I have met pastors' kids who behave "perfectly" in public, but are the most rude, backstabbing cruel people behind closed doors.

Give me a pastor with 10 aspie kids rather than most snobby PKs I've met.

Sarah - posted on 04/13/2011

Thank you for your post Irina. It truly touches my heart to hear of other women in the ministry with autistic children. It tickled me to hear he wants to drink all that juice.
When we were at our previous church, when the Pastor would say, "This is my body....this is my blood" My little guy would say very loudly, "Ewww!" The first couple of times the congregation laughed, but then my little SpongeBob who ripped his pants, kept doing it to get the laughter.
Did any of you get mad at God? I still find myself getting angry when my little guy will act perfectly normal (yes I know, no such thing) and then the switch will flip and he's throwing a mouthing tantrum....it's like on Big Daddy when Adam Sandler says, "OH MY GOSH YOU WERE NORMAL YESTERDAY" Except I replace "yesterday" with "five minutes ago".

Irina - posted on 04/13/2011

Hi Sarah. My name is Irene, I'm a pastor's wife too and my husband is pastoring a church in Russia. My younger son, who is 4 now, was diagnosed with autism when he was only 2. I did so many things at church but when I found out about my son being autistic I had to change my priorities, because actually family comes first and then the church and the ministry. I try to do as much as I can but it all depends on how my son feels in this particular day. the church has been very supportive and if I need to sing in the worship team and my son screams and falls down on the floor, I have a back up person who can always replace me at such moments.It can be hard because new people that come to church may think that pastor's kid is absolutely spoilt and can do whatever he wants at church but in the end what matters is my heart before God and how I treat my child in such moments. By the way, communion is hard for us too, because he always wants to drink all of that juice :)

Sarah - posted on 04/12/2011

Joy,
Thank you for your reply. It helps sooo much to know I am not the only one out there.
I had someone tell my husband recently that our children were going to be our downfall. It was really hard to forgive that person. But after contemplating what he had said, I could see his point.
I have older step-children that have been in and out of our house since my kiddos were born. Needless to say, my son has picked up the habit of cussing. - Cannot get him to quit. It's hard to be in the middle of teaching Sunday School and my little aspie get frusterated and call me or one of his classmates a bad word. He has also learned that if he calls himself a badword it is derogatory toward me. How many churches would put up with the Pastor's kid cussing? I used to tease my previous Pastor and his wife that as long as my kids weren't worse than the Pastor's kids my kids were fine, because I know that there is a cliche' that pk's are pretty rambuncious. (spell?) But he is over the top and I am learning that Aspies can throw a pretty talented fit. (How do they know the WORST time to get upset -- during communion? Are you serious? - Yep, during communion...when it is absolutely quiet)
I am afraid that my church will not know I love them as I hurry my son out to the car because "free time" is chaos.

Thank you for your post. It was very relieving and encouraging.

Joy - posted on 04/12/2011

Hi, Sarah. I have been a pastor's wife for 12 years. My eleven year old daughter, Abigail, has Asperger's. She was diagnosed when she was three years old.

Over the years I have learned that life comes in "seasons". I know some women "do it all" but I have found that my level of involvement at church has fluctuated according to the needs of my family.

I know every pastor's wife might not agree with this, but I also check myself to make sure I am called by God where I serve and am not just signing up because my husband is the pastor. When I start serving out of guilt or obligation, I am not very effective.