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Created by God

May 14, 2012 By Louise 3 Comments

Reading Cassandra’s post I was reminded of a time that seems so long ago now. I was seriously dating a young man who was born with a double cleft lip and cleft palate. As we talked about getting married and our future together we also discussed not having children because of the fear of bringing a child into the world to face the pain of a future with a birth defect. This young man knew personally the pain and cruelty of staring eyes, taunting children, and hurtful words. He knew that he did not want to subject a child to that torment. Nor did he want to subject me as a mother to the pain of watching my precious child suffer through the emotional pain as well as the physical pain associated with the numerous corrective surgeries. We were young and idealistic and thought we knew what was best.

Bobby (6 months old) after 2 reconstructive surgeries

As time passed and we continued dating our relationship progressed and we became engaged. We mostly avoided the subject of children because we had an understanding. We both loved kids and babysat for friends at church, but that nagging feeling of wanting to protect a child from being born with a birth defect kept us from seriously considering that we might really want to be parents one day in our later married lives.

After Bobby graduated from college we got married. It had been a long dating and engagement period. We had been together for eight years at that point (I won’t mention how old we were when we started dating because we do not advocate dating at that young age and I don’t want to have any upset parents posting comments.) After a while I started having baby pangs so I started doing some research. I wanted to find out what our chances of having a child with the same birth defect Bobby has would be. We didn’t know all of the circumstances surrounding his mother’s pregnancy, but we did know she was over 35, and there were a couple of other factors that could have contributed to the birth defect. It seemed to us there was a high probability that it was not genetic. The odds were good that our child would not be born with the same birth defect.

We took the information and went to see my ob/gyn. He heard our case and then said, “You don’t need to have a baby unless you are prepared that there is a 100% chance for your baby to have a birth defect.” That really threw us for a loop. It was hard to hear, but he was so right. In all of our calculations and fear, we forgot that we were supposed to trust God to give us the child that he intended for us to have—a child that is “made in His image.”

“For everything created by God is good, and nothing should be rejected if it is received with thanksgiving,” 1 Timothy 4:4 (HCSB)

With prayer and humility we trust God to make us the parents he wants us to be. It was no longer important to know whether or not our children would have special needs. We knew that God had chosen us to parent them and that whatever needs they had, if we would receive them with thanksgiving we would be blessed. And, oh, what a blessing it has been!

 

Andrew, Katie, Stephen, Me & Timothy - Mothers' Day, 2012

~Louise

 

Filed Under: humility, Parenting Tagged With: ,

For Love of an iPhone

May 8, 2012 By Louise Leave a Comment

My 15 year old son, Stephen (AS, Anxiety) is very good at saving money. He loves to earn money and save money. For the past year he has been talking about getting a part time job so that he can earn more money. I’m not sure why he needs so much money because we don’t make him pay rent or charge him for his food or make him pay for his own clothing, but nevertheless, he wants to make money.

We have a deal with Stephen that he has to pay for the “extra” things that he wants—when he wants us to stop for a soft drink on the way home from school, that’s on his nickel. Since he has a bit of an obsession over hats and coats, he has to pay for those or at least some portion of them. And when he decided that his current phone wasn’t satisfactory anymore and the free replacement phone wouldn’t do, well, he was going to have to pay for that.

Although Stephen is not normally influenced by trends, his attention was captured by (Aspergian translation: he became all consumed with) the iPhone 4s.  Once his older brothers and mother had one, it was all he could stand and he just HAD to have one. Even though we were not convinced that it was going to be the best choice for him we decided to let him make the decision on his own. After all, he was going to be making a large investment and since it was his money, it should be his decision. He was a little short, so we offered to contribute $20 as part of his birthday present. He still didn’t have quite enough, so he worked out a deal with his younger sister to borrow $35 from her. The arrangement they made involved him paying her back $10 per week from his mowing money for four weeks. (I thought it was nice that he built in a little interest for her trouble.) So, it was all settled and we headed off to the phone store to buy his new phone.

We got the phone and he was happy for a few days. But, you could tell that something was nagging at him. It was interesting to watch the processing that went on in his mind over his purchase and the feelings that went along with what he had done to make the purchase.

First of all, he could not stand the thought of not having any more money saved. He had spent all the money he had to buy this phone. It didn’t take long for him to begin doubting the wisdom of that decision.

Second, he hated owing his sister money. He quickly upped the pace of paying her back and was able to pay off his debt to her in about two weeks instead of the original four. Of course, she helped out a little by forgiving $10 of his debt as a birthday gift to him.

Third, when he spent all of his money on the phone it left no money to buy a case to protect the phone. Part of his regret was that he was worried about dropping or scratching the phone because he had no way to protect it and no money to buy a case for it. As it turned out he only went a week without a case because he got one from his grandmother for his birthday.

This was a great lesson for Stephen. I think the regret that he felt over making the purchase before he had enough money saved to pay for it will lay a great foundation for the future when he is considering making even larger purchases. This experience has reinforced to me the importance of teaching our kids to handle money while they are young to try to help them avoid the pain and devastation that can be caused by poor money management later in life.

~Louise

 

Filed Under: Asperger, Money, Parenting Tagged With: ,

Lessons from Orange: Teaching a Child with Autism in a Small Group Setting

May 1, 2012 By Louise Leave a Comment

While at Orange Conference 2012 I attended a breakout session led by Linda Martin, a board-certified music therapist who has a master’s degree in music education, music therapy. She serves as the program coordinator for the Autism Discovery Institute at Rady Children’s Hospital in San Diego, California.  She also works in music therapy and consulting for several southern California school districts and churches desiring to start or grow their special needs ministries. Linda provided some great information about ways churches can incorporate kids with autism into their small groups. Here’s what she covered in a nutshell.

Autism deficits affect three core areas: social, language and behavior. When you are preparing to minister to a child who is on the spectrum in a small group setting you should be prepared to address all three areas to varying degrees.

When you have a child on the autism spectrum in your class, it is helpful to provide a visual schedule for the time the child will be in your class. Many times children with autism are very anxious about what is going to happen. They like schedules and predictability. By providing a visual schedule (and sticking to it as much as is humanly possible) you will provide a sense of comfort and security for them. A good resource for pictures is google images or you can use actual pictures of your own classroom.

It is also important to help children with autism by modeling appropriate communication for them. If they have the verbal skills, help them learn to look at people (or at least in their direction) when they are talking to them. Provide ways for them to express themselves if they don’t already know (“I was mad when you took the ball away from me” or “I don’t want to eat a snack right now”). Many times children who are non-verbal can communicate in other ways–find out from parents if the child can communicate in writing or by drawing and then provide the necessary resources, if at all possible.

When dealing with disruptive preoccupations with objects, parts of objects, or hobbies it is helpful to understand how these behaviors can be used as an effective tool in getting the child involved in your small group. If the child has an intense interest in an object or a particular subject look for ways to use the interest as a reward for a desired behavior. Make the arrangement ahead of time with the parent or caregiver and the student. The example was given of a girl who loved to scrapbook. The arrangement with her was that if she would sit in group time for x minutes then she could later spend x amount of time scrap booking.

The last component that Linda covered was the social aspect of working with the child with autism. She suggested looking for ways to insert yourself into the child’s play. By inserting yourself into the child’s play you are opening an opportunity to engage peers in the play as well. Because children with autism do not understand social cues, it is our job to help them understand and use verbal cues (look at Eva when you are talking to her so she knows you are talking to her).

In closing, Linda shared with us about using music therapy as an effective way of teaching scripture and other concepts. Music therapy is using music to teach a non-musical goal. When choosing songs to use you should consider the pace of the song, repetition, whether it provides opportunities for rehearsal, teaches a concept, and uses simplified language.

***It is our desire that ChosenFamilies.org as a community would be able to provide more resources such as these for churches in working with children and adults with hidden disabilites. If you have input or suggestions we would love to hear your comments.

~Louise

 

Filed Under: Autism, Church Response Tagged With: ,

Waiting on the Lord

April 24, 2012 By Louise Leave a Comment

The Lord of hosts will prepare a lavish banquet for all peoples on this mountain; a banquet of aged wine, choice pieces with marrow, And refined, aged wine. And on this mountain He will swallow up the covering which is over all peoples, Even the veil which is stretched over all nations. He will swallow up death for all time, And the Lord God will wipe tears away from all faces, And He will remove the reproach of His people from all the earth; For the Lord has spoken. And it will be said in that day, “Behold, this is our God for whom we have waited that He might save us. This is the Lord for whom we have waited; Let us rejoice and be glad in His salvation.”  Isaiah 25:6-9

I don’t know about you, but I’m about ready for the part where “He will swallow up death for all time” and “the Lord will wipe tears away from all faces.”  It seems that everyone I know is touched by death and sorrow right now. Even as I was writing this post I got a phone call from my mom telling me that someone we used to go to church with died unexpectedly from a blood clot (someone not much older than I am). The same cancer that killed my dad is now threatening the life of my uncle. In Africa a baby was born too early and fights to live–her parents are there because they love Jesus and want others to know Him.

Sometimes it just feels overwhelming and I don’t understand why there has to be so much pain, suffering and death. But, then I read passages like Isaiah 25:6-9 and it becomes more clear–we are waiting on the Lord. He is our salvation! As it says in Revelation 22:20, “He who testifies to these things says, ‘Yes, I am coming quickly.’ Amen. Come, Lord Jesus.”

Waiting expectantly,

Louise

 

Filed Under: Bible, Encouragement, Grief, Hope Tagged With:

From a Boy to a Man

April 17, 2012 By Louise Leave a Comment

 

Stephen, 4 years old

For so many years Stephen and I had a great codependent relationship going on. I always thought it was his “fault” and that I was at his mercy, but now I’m seeing things a little differently. Over the past year we have pushed a lot of changes on Stephen (AS). One of the biggest changes was that I was going to begin treating him like the young man he is becoming and not the little boy he used to be (sometimes it is hard for us mamas to recognize the difference). And, I have to say that he has taken it like a man.

When it comes to school I have almost completely left him on his own to manage his assignments and communicate with his teachers. With only a couple of exceptions due to extraordinary circumstances during the year did I intervene at all, and my input was minimal—that was a BIG change from previous years.
 

Stephen, Katie & Andrew, April, 2012

On the home front, my husband and I have taken a few short trips recently and when I’ve been out of town there have been entire days that I have not had a phone call or text from Stephen needing assurance or help from me in any way. I have to admit that as a mother there is a moment of sadness when I realize that my children don’t “need” me as much anymore. But, there is also a moment, especially when parenting a child with a hidden disability, when I thank God that my child feels confident enough to make it through the day on his own.

Stephen just turned 15. I would say that while he was 14 we saw monumental growth on his part (and mine, as I learned to let go and let him fly on his own). I can’t wait to see what God has in store for him this year. He will be pushed in new ways with his older brother graduating from high school and moving away for college, his parents being gone for an extended vacation without him this summer…and a shorter summer than ever before because school will start at the beginning of August. From what I’ve seen over the last year, I think he’s up for the challenge!

 

 

 

 

 

 

 

 

~Louise

 

Filed Under: Asperger, growth, Parenting Tagged With: ,

Friends: I’ve Had It All Wrong!

April 3, 2012 By Louise Leave a Comment

I’ve spent a decent amount of time worrying about Stephen not having friends. In fact, I think I worry about it much more than he does. He is almost 15 years old and seems pretty confident in who he is (most of the time). When I chaperone fieldtrips for school other kids don’t try to avoid being around him. I never get the idea that he is a social pariah among his peers. Yet, I worry because he doesn’t have a close friend that he likes to hang out with.

This was the topic of conversation not long ago in the car. The subject came up because Stephen’s younger sister was expressing her frustration over a situation with a particular friend. As we talked I asked Stephen if he remembered some friendship difficulties he had experienced in second and third grade. Both times I was contacted by his teachers because Stephen was having difficulty when the friend he primarily played with wanted to befriend a new student in the class.

As we talked and laughed about these situations that happened so many years ago Stephen had difficulty remembering the dynamics of those friendships. But it led to a great conversation about what he is looking for now in a friend. I asked him flat out, “what would make a good friend to you?” I was taken aback by what he said. His answer was, “someone who doesn’t expect too much out of me in the relationship.” I’m still processing exactly what that means.

All this time I’ve been using my own definition of friendship when Stephen’s definition and expectations are completely different. He isn’t looking for someone to share hours of time and pour his heart out to. He is looking for someone to hang out with when he is bored, maybe play video games or go to the park to throw a Frisbee. He is looking for someone to call when he feels like getting out and doing something. But mostly he’s looking for someone who won’t put pressures and demands on him that make him uncomfortable.

With this new definition of friendship we can work on finding one or two guys who like to do some of the same activities Stephen enjoys and arrange some hang out time with no pressure and no demands. And, who knows … maybe something more will develop over time. And, just maybe he might develop a lifelong friendship that fits his idea of what a friend should be.

~Louise

 

Filed Under: Asperger, Friends Tagged With: ,

All Shook Up

March 27, 2012 By Louise 4 Comments

I got myself all worked up over nothing today. My mother and I went to the grocery store. She checked out in a regular check-out lane while I opted to do self-service (I think it is a throwback to when I was a kid and always wanted to be a checkout clerk in the grocery store). As we got in the car my mom told me that the cashier didn’t accept one of her coupons because it wasn’t for the right product. Well, I KNEW it was for the product she bought because I distinctly remembered the discussion my mother and I had as we checked which products would be covered by the coupon. So, I told my mom that I would take the cookies, the coupon, and her receipt back to the store and get the money for the coupon for her.

On my way to the store I rehearsed in my mind what I would say. I considered any argument that might be leveled against me. I tried to keep myself as calm as possible, but I could feel that old familiar feeling. It happens all the time when I have to right a perceived social injustice. My adrenaline kicks in, my heart rate goes up, my hands start trembling, and, I’m ashamed to admit, I go on the defensive. I anticipate conflict. Most of the time there is no real reason for it, but it still happens.

Today was no different. The customer service representative was as nice as she could have been. My hands were shaking as I took the money from her hand. We spoke kindly to each other. No one raised their voices. No one got irritated. It was a pleasant exchange and there was no reason for me to have such a physical reaction.

This makes me think of Stephen (AS) because I know he deals with anger and anxiety. As Stephen and I go through life and face situations where we have to confront people about things that we have questions about, how can we both learn to calm ourselves so that we do not experience those physical reactions that put us on edge? The responses that are part of fight or flight have no place in our everyday interactions with people. I suppose a book like Proverbs is rich with advice for situations such as these…here are a few of my favorite verses on the subject.

A gentle answer turns away anger, but a harsh word stirs up wrath. Proverbs 15:1

A hot-tempered man stirs up conflict, but a man slow to anger calms strife. Proverbs 15:18

Patience is better than power, and controlling one’s temper,

than capturing a city. Proverbs 16:32

 

Filed Under: Anxiety, Asperger, Bible Tagged With: ,

Mom’s Subway Melt-down

March 20, 2012 By Louise Leave a Comment

Thursday was a big day around our house. Not only was it our daughter’s birthday, but it was also the day of the Beta Club induction ceremony. On this particular day our youngest son, Stephen (AS) was being inducted into the Beta Club (a big accomplishment!) and our middle son, Andrew was receiving his senior cords. It was also going to be a busy day because I was going to be making brownies to distribute to our daughter’s class at school during lunch then rushing from there to attend the Beta Club ceremony. My husband and I had chosen not to go with our boys to the luncheon following the ceremony because of the $20 per person price tag.

As a treat for our daughter’s birthday my sweet husband prepared pancakes for breakfast. As I came down the stairs the children were already in the kitchen eating and the first words I heard were, “Why do you have to sit with MY friends? It isn’t MY fault you don’t have any friends.” Wow, okay. Pause at the bottom of the stairs. My husband could see me, the kids couldn’t. I had to sit down and tear up for a minute at the reality of that statement. It was hurtful and true. I’ve written before about trying not to force our older son into allowing his younger brother to tag along with him because socially he can be a time bomb when things don’t go his way. Been there, done that (see previous post). I have to tell you, I’m not a morning person and emotionally I wasn’t ready to deal with this issue. I had to have a moment to pull myself together before I could even give my daughter a birthday hug. After I sat there for a few minutes I was able to join the family and we made it through the morning. The plan was that Bobby and I would find out what teachers were going to the luncheon and make sure that Stephen had someone to sit with. Before everyone left we mentioned privately to Andrew that maybe he could find a table with two extra seats and invite his brother and another new member to sit with them. In that way the seniors would be ‘welcoming’ the new members into the organization. He smiled and seemed agreeable. We thought it might happen….

Andrew & Stephen after the Beta Club Induction Ceremony

Andrew & Stephen: Stephen is making a funny face because his brother wouldn't stand closer to him.

The morning whizzed by and there we were at the ceremony. Stephen looked so handsome and grown up. We watched proudly as he walked across the stage to accept his certificate and pin. Everything went great. After the ceremony we walked outside and took a picture of the boys before they boarded the bus to the restaurant. We were the goofy, doting parents and the boys are used to it. As we stood by the bus we didn’t see any other teachers so there was really no opportunity to talk to anyone about Stephen’s situation (that being that he WILL NOT ask anyone he doesn’t know well if he can sit with them—he would rather sit alone). But, Stephen seemed to be in good spirits and we trusted everything would be fine. We left to eat lunch together.

So, there we were, sitting in Subway sharing a sandwich when the phone rang.

Stephen: I thought you said you had worked something out with Andrew.

Me: What do you mean?

S: For me to sit with him

Me: I kind of thought we had, too. Where are you?

S: At a table by myself

Me: Where is Andrew?

S: With his friends

Me: Is there an empty seat at his table?

S: No

[As we talked I felt that sensation coming back and tears started building up in my eyes.]

Me: What about the teachers? What teachers are there? Can you go sit with them? Is there room at their table? (Let me add here that Stephen is actually more comfortable conversing with adults than peers, which is fairly common with Aspies).

Stephen: I don’t want to ask them, they would think I’m strange.

Me: Stephen do you want me to cry right here in the middle of Subway? Because that’s what I’m about to do. Go ask them if you can sit with them because I can’t stand the thought of you sitting there by yourself! Please, for me, go ask them! I’m even wearing makeup today and it is not going to be pretty when I cry!

We went back and forth with me begging him to go ask someone to let him sit at their table and him refusing. I knew that it would have been MORE out of character for him to ask than for him to sit alone, but that didn’t make me feel any better about it.

In the meantime, while this conversation was going on between Stephen and me Bobby was texting Andrew asking him to help with the situation. He asked Andrew to have one of the teachers invite Stephen to sit at their table. So, Andrew asked the teachers if it was alright for Stephen to sit with them then went and got Stephen and took him over to the table and introduced him. At that point Stephen sat with the teachers and all was well. It seems that the day was saved, this time. The problem comes next time when his older brother isn’t there … or when he doesn’t call to tell me that he is sitting alone.

Will he ever develop a desire for companionship that will overcome his fear of the unknown? Is he satisfied being an observer of the relationships of others? I know there is someone out there who needs a friend like Stephen.

~ Louise

Filed Under: Asperger, Parenting Tagged With: ,

Volunteer Opportunity

March 13, 2012 By Louise Leave a Comment

Stephen & Jazzy (July, 2011)

Stephen loves to work with small children. I’m pretty sure it is because they like him for who he is. They don’t think he’s strange because he isn’t into sports or the current movies or tv shows. They don’t judge him for not talking like everyone else or looking like everyone else. And, they like to sit on the floor and build with blocks, too. They allow him to act silly when he wants to and they let him be quiet when he wants to. Overall, little kids are pretty cool like that. They might ask an awkward question from time to time like ‘why are your teeth yellow?’ or ‘why are you so short?’ but when you give them an answer or say ‘that’s just how God made me’ they generally move on and don’t mention it again. That’s pretty cool, too.

Recently I heard about a program hosted at my mom’s church for special needs kids. The program is called Buddy Break and it is a parents’ night out once a month for special needs kids (VIPs) and siblings. Although Stephen has Asperser’s, he is very high functioning and we have no problem leaving him at home alone or with his older brother while we go out for a few hours. What I noticed is that they were looking for volunteers (Buddies). With Stephen’s love for working with children I thought he might be interested in helping.

When I brought it up with Stephen he was enthusiastic. He had seen a ‘commercial’ for Buddy Break while at D’Now (youth discipleship weekend) so he was already familiar with it. We got online and registered him to be a buddy. We had to provide references so we discussed who would be good references. While we were talking about the experience and how it would be a good thing for him to be involved with I mentioned that it would be a good community service opportunity because he is being inducted into the Beta club this week. How shallow did I feel when he responded by saying, “And, mom, since I have a hidden disability I can kind of relate to them, too.” (Excuse me while I go wipe my eyes.)

Yes, that, too.

~Louise

 

Filed Under: Asperger Tagged With:

To Sing or Not to Sing

March 6, 2012 By Louise 1 Comment

One minute they were getting along wonderfully then next minute they were raising their voices and bickering, bickering, bickering. That is how quickly the temperature of the house changed.

Here is how the afternoon progressed. They played outside together. They planned to watch a video together. They ate dinner together while they watched the video. But then, as soon as the video was over and it was time to clean up, SHE committed the unpardonable sin (at least as far as her brother is concerned)—she began singing while she cleaned up.

And THIS is the ongoing battle in our home. Our daughter loves to sing … and dance … and make music. Our son with AS dislikes music and particularly dislikes his sister’s singing. He doesn’t really tolerate any of us singing along with the radio, but to refuse to let his eleven year old sister sing when music is in her heart just seems unreasonable at times. And, when she asks why he doesn’t want her to sing and he tells her that he doesn’t like her singing — never mind that he doesn’t like any of our singing — It hurts her feelings.

So, she sings, he asks her to stop, she continues because she believes she has a right to sing and we are torn with how to handle the desire to express herself musically with his desire to not hear her. Telling her just not to sing around him hasn’t worked. Asking him to be more tolerant of her hasn’t worked.

I guess the thing we have to figure out is who needs to have the bigger growth lesson here. Or maybe it is that they both need to learn to give a little and try to meet each other at some happy medium, if there is such a place that exists between a girl who loves to sing and a boy who doesn’t like music.

~Louise

Filed Under: Asperger, Parenting, siblings Tagged With: , ,
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