Soldier's Wife, Crazy Life

Asperger's

Taking A Child With Autism To Church

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Taking A Child With Autism To Church

Taking a child with Autism to church can be a different type of struggle.

Finding a good church home can be difficult for anyone. Add in a child that doesn’t always do or act the way everyone else does makes it even more complicated.

We have been trying to find that mix between going to a church we believe in, with people who are loving and welcoming, where our kids can learn about God and Jesus. We have attended great churches where we just didn’t agree with the theology as much as we would have wanted to. We have gone to great churches where the pastor was amazing but it just didn’t work for our kids. Especially our child with Autism .

Last June, with my husband deployed, I took a little break from church. I didn’t know which church to go to and I didn’t have it in me to look for a new one. However, a few months of not going to church really got to me. I missed it. I decided to try a church I had heard about before. I was told they were really good with special needs kids. I hadn’t tried it before because it is about 20 minutes from our house. I know that is not too far but I really liked the idea of being really close to church.

I took my boys there and ended up really loving it. The people were so friendly and helpful. The pastor was very nice and I loved the service. I joined a Sunday school class and now nine months later we finally have found our home church. That being said, sometimes it is hard to go on Sunday morning.

My child with Autism just finished the 1st grade and was in a Sunday school class with 1st and 2nd graders. His teacher is really amazing. She has a family member with Asperger’s and she totally gets my son. This made me feel so comfortable. When he had a rough morning, she seemed to know what to do to help him. Other people at the church have been very helpful and understanding too. It really has worked out well for us.

Still, I feel sad sometimes that church is so challenging.

It is another place we go where it can be very stressful for my son. I know that in the end it will be worth it and he will get a lot better about it in the years to come. I want my children to have what I had. A strong church background. I want them to know the Bible stories, experience church camp and all of that. If they decide church is not for them as an adult, at least I know I gave them that background.

Little things like the church Easter egg hunt or a longer than normal service can make for a frustrating day. for a child with Autism. Even things you wouldn’t even think would set him off, sometimes do.

Some mornings I just can’t do it. I want to stay home and relax and not have to worry about it for that week. I know church is important though so we do try to go almost every Sunday.

A couple of months ago I met a couple at church with a son with Asperger’s who is about 21. They talked to us about some of the struggles they had when their son was our son’s age. That really helped. It made me think about how as the years go by he will be able to understand how to act a little better. And that when he is 21, he hopefully will be able to have a job, go to college and be an independent young man. Finding other parents with a child with Autism can be very helpful.

I am thankful we finally found a church that really works for us and our family. I am so thankful that it is filled with people who are willing to be patient and help my son when he needs it. Even if the time at church is challenging, I am so glad we have finally found a church home.

If you have a child with Autism or another special needs kid, have you found church challenging?

 

 

Life As A Special Needs Mom

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In 2007, my almost three-year old boy was diagnosed with a developmental delay. We first realized something was going on when by 2.5 he was not saying a whole lot. He could say a handful of word such as “mama” or “ball”but he was not talking like the other 2.5 year olds we knew.

Life As A Special Needs MomI don’t remember being terribly upset about this. I knew that if we knew what was wrong it would be a lot easier to get him help. He started a developmental preschool right away. At age 5.5 when we moved to Tennessee he started extra speech therapy and started in a special needs Kindergarten class. The next year he repeated Kindergarten in a regular classroom.

He is now  9.5 and only needs a little bit of speech help at school. He dropped the DD label last April. They told us in 2007 that around 2nd grade he would probably be caught up. That is pretty much true. While he is by no means a “mature” 9.5 year old, he is right where he needs to be school wise. His special needs were very hard from ages 2.5-around 6. I remember trying to talk to my 5.5 year old boy about his day and he couldn’t have a conversation with me. It broke my heart, it really did. But now at 9.5, we can talk about most things. I will never forget those years.

I have friends whose children are very young who are just starting the speech process. I am glad that I can be there to support them as we have already gone through what they are about to. To let them know that their own child is going to be just fine.

In 2012, his brother who was 5 at the time, was diagnosed with Asperger’s. This was going to be a whole different special needs ball game. You don’t grow out of Asperger’s like you do a Developmental Delay. It is who my son is. Luckily we were able to start therapy with him right away.

It’s been two years and we have had so many ups and downs. He just finished the 1st grade and academically he is at the top of his class. Socially andbehaviorallywe have a long way to go. I have heard from Moms with kids with Asperger’s that it will get better. That he will figure out how to act, how to control his anger, that he won’t always expect to always get his own way. Some days it seems like we will never get there. I also have to remind myself that things are different for our little family. In some ways we can make life normal, in others we have to adjust a little bit.

That is one of the hardest parts about being a special needs parent. 

Being able to accept that the vision you had for your family, is not going to be your reality.

And it might be farther off that you could have ever dreamed. That situations you thought would be easy, become a big challenge. That you cry more than you thought you might. That some days you question what you did wrong to cause it, even if it had nothing to do with you. You can’t help it. Your mind just keeps turning, trying to make peace with it all.

And I remember that I am really not alone in all this. There are others going through what we go through, there are others that have it much worse. At the end of the day, I look at my little family and feel in my heart that everything is the way it is supposed to be. That being a special needs mom is just who I am. That some days it will be hard and others will be a little easier. That really, there is no such thing as normal. It is just a setting on the dryer 😉

 

Moms just know

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As a Mom, you know your kids. If your child had special needs that you didn’t find out about at birth or during your pregnancy, you will remember when you first started to think something was going on. Most likely it was before anyone else knew something was up.

Moms just know.

I knew when my 2.5 year old wasn’t talking that something was up, I was right, he had a developmental delay.

I knew something wasn’t right with my 3.5 year old. No he had never been in a childcare setting before but something wasn’t right.  He never grew out of some of the behaviors he should have.  I felt like nothing we did with him worked.  I was right, he had Asperger’s.

I have talked with other special needs parents and it seems that Moms, they just know. They always question it first. Husbands might ignore it. Doctors might brush it off as normal behavior, but a Mom always knows. And I know in some cases it is the Dad. I am not trying to say that only females have this kind of intuition but from what I have seen it is usually the Mom. Most of my friends stay at home with the kids while their husband is in the Military which I am sure has something to do with it. Moms are with the kids all the time and the Dads are away a lot of the time. My husband was deployed when I took my oldest son in for testing.

Moms know their children very well. We know how they eat, how they talk and how they sleep. We agonize over it before they are even born. We try to figure out the best way to handle the early years. As the child grows we start to wonder if something doesn’t seem quite right. We question ourselves. We ask our friends and our doctors.

I had brought up Drew’s issues twice with the regular doctor. They kinda brushed it off. But I knew and it took him going to regular preschool for me to make the call to be seen by a behavioral doctor. And I did this because I knew. Something wasn’t right. He wasn’t just getting used to school. He wasn’t just a normal four-year old. And I was right. Something was going on.

If you are a Mom or Dad and you are worried about your child, don’t give up on trying to figure out what is wrong. Deep down you know if something isn’t quite right. Trust your gut and keep asking questions. My experience is with Tricare. I called my son’s PCM and asked for a referral to the behavioral pediatrician. After a few months we finally got an appointment and started the process of figuring out what was going on. Sometime the process is hard and takes too long. That isn’t fair but keep at it. If no one is calling you back, you call them. Work hard to get the testing you think your child might need. It will be worth it in the end.

Do you have experience with feeling something was wrong with your child before anyone else did? Was it a struggle?

Since today is World Autism Awareness Day, I will be posting about Asperger’s, Autism and Special needs all week. Yesterday I talked about Accepting Autism.

Accepting Autism

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Accepting Autism

April 2nd is World Autism Awareness Day and April is Autism Awareness month.  My family will be participating in a walk later on this month.  I also plan to blog about Asperger’s and Autism this week.

When we found out Drew had Asperger’s in January of 2012, I was able to accept it pretty easily.  I had done my research and I knew that was what he probably had.  But when I thought about him having Asperger’s meaning that he had Autism…well that was a much harder label to accept.  For months I had a very hard time with it.

Autism…it can be a scary word.  When you find out you are pregnant, you worry about things and Autism is one of them.  You might wonder in the back of your head if the things you do for your baby will lead to it down the road.  It is scary to think about.  You don’t want anything to be wrong with your child.

But now, 15 months later, I can say I have pretty much accepted it.

My child had a form of Autism.  We have an Autistic child.

And that is okay.  It is not the end of the world.  It is not the worst thing that could happen to us.  Not even close.  It means having more patience.  It means having more struggles.  It means breaking down and crying and praying a little more often but it is not the end of the world.

School started out as a challenge but lately things have been going well.  Today is the first day back from Spring break so I am hoping he has a good day.  We will have summer break coming up and I hope it goes well and then hopefully we can have a good transition into first grade in the fall.

He doesn’t quite understand he has Asperger’s or Autism.  He does plan to wear blue tomorrow only because I told him to.  I am not sure when we will bring it up to him.  So far he hasn’t ask any questions.  He doesn’t wonder why he has people with him at school that other kids don’t.  He doesn’t question why he gets more frustrated about things than his brother does.  I think someday he will question it but it hasn’t happened yet.

Later this week I plan to blog about how Moms of special needs kids usually just know something was going on with their kids before the doctor did, my hopes and dreams for my son as he gets older, questions others might have about Asperger’s, and parenting a special needs child during a deployment.

Please let me know if you have any questions or topics you would like me to blog about.  I would be happy to answer them or talk about them in a future most.

 

What is ABA therapy?

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Right after my son Drew was diagnosed with Asperger’s in January 2012, we received information about ABA therapy for him. Back then I really didn’t know a lot about it but I assumed it was something like what Max had in Parenthood. I wasn’t sure how it worked.  If we went somewhere for it or if they would just come to our home. We were able to start a few weeks after we got the diagnosis.

What is ABA therapy?

ABA stands for Applied Behavior Analysis.

According to Autism Speaks, Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.

Applied behavior analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behavior.

As mentioned, behavior analysts began working with young children with autism and related disorders in the 1960s. Early techniques often involved adults directing most of the instruction. Some allowed the child to take the lead. Since that time, a wide variety of ABA techniques have been developed for building useful skills in learners with autism – from toddlers through adulthood.

These techniques can be used in structured situations such as a classroom lesson as well as in “everyday” situations such as family dinnertime or the neighborhood playground. Some ABA therapy sessions involve one-on-one interaction between the behavior analyst and the participant. Group instruction can likewise prove useful.

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What has been our experience with ABA?

Drew has been in ABA therapy for 13 months now. When we first started he was only in preschool. They came to the house a couple of times a week and also went to school with him. He was attending a church preschool so we had to get their permission for them to be there. Luckily that wasn’t an issue and they let them in to help him learn how to act in school.

At the time Drew had a big problem with being told what and when to do things in the classroom. He had a very hard time playing with his peers and not throwing fits over every little thing.

Over the last 13 months we have worked with 4 different therapists/tutors. Last year he would go to school twice a week and then usually he would have a few hours after school with one of the ABA therapists.

When summertime hit we would see them about 4 times a week. Sometimes it was at home, sometimes out in the community. They even went to swim lessons with him. Sometimes they would come over and we would try to get him to ride his bike. Other times we would practice playing board games which he had a very hard time with at first. They use a reward systems so he is always working for something. If he gets so many stickers, he earns a prize. At first he would earn m&ms every few hours. Now he needs to earn six stickers throughout the day at school. If he does that he earns an Angry Birds Buck (we made this up) and if he gets a certain amount, he earns something of his choice. He can earn a trip to McDonald’s for five Angry Birds Bucks or work for 15-20 for a toy. This system works so well for him and he is so happy when he gets home from school if he had a good day.

These days I don’t see too much of the ABA therapists. Drew doesn’t see them as much anymore either. When he started school last fall we realized right away that he needed them there during the day. Now that it is March they are just on call with the teacher and might stop by during the day to check on him. They also meet with him at home once a week to go over school stuff and talk about the Angry Birds chart.

There have been difficult times where he was really upset and they helped me with him. They guided me about how I should act during a fit and I have always felt free to ask them any questions about Drew or what he is doing.

I am just amazed at how much Drew has changed since last February. We were in CA a week, lots of new situations and the only real meltdown he had was at the wedding. And this was understandable as the music became very loud and he was very tired. But that was after being at my parent’s house for a whole week already.  A big change from when we were visiting last summer.

School is getting much better for him too. We only have about 2.5 months left of the school year. I do worry about being out of school for the summer and starting first grade in the fall. I am glad we have such wonderful therapists that work with him. You can really see that everything they have done has paid off.

If your child has just been diagnosed and you are about to start ABA, I hope that I have given you an idea of what to expect.

 

 

What I have learned about raising special needs children

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Asperger'sThis weekend we had a hard Asperger’s Day. Friday night he threw a three-hour fit. Luckily the next day he was rather calm and very pleasant. It seems to be the way it goes.

As I look back on Friday I have to ask myself what I could have done differently. I look at what choices I made that led to it. How it could have been prevented and what I can do in the future if a similar situation comes up.

I thought about what it is like to be a special needs parent. How life is just a little different when it comes to parenting special needs kids. How things don’t always go the way you want or the way you think they might go.

I thought I would talk about some of the things I have learned over the years about  raising special needs children…

  • Learn to pick your battles. This is a biggie. Although you want to be firm with your kids, sometimes you do have to pick your battles. If your kid is in a certain mood, everything is going to cause a problem so pick what is important and don’t worry about the rest. This was part of the issue on Friday. I should have just stuck to the major issue we were dealing with instead of expecting him to do more than that. If your kid only wants to wear his jacket like Batman does and getting on the bus is a big issue anyways, let it go. It really isn’t that big of a deal. Focus on the getting on the bus part. Don’t worry about the jacket.
  • Take time for yourself. You need it. When you feel like it is getting to where YOU need a timeout, take one. If you are the only adult in the house it might be a little harder to do this. You might need to just say, “You know, ME taking a timeout is more important than THIS battle.” If there is another adult in the house, have them take over for a while. Go take a bath, read a book or meet a friend for coffee.
  • Look at the big picture. Instead of thinking about the bad days, look back over the last few weeks or months and see how far your child has come. If it helps, ask a friend to remind you of this. They don’t see your kids everyday and can notice more of a difference. I know with my oldest I felt he would never really learn to talk. But then I would take to a friend who only saw him every few months and she would tell me how much better he was doing. It was hard for me to see since I was always with him. It helped to hear that others saw the progress even if I didn’t.
  • Find a good support group. This is so important. Find people who support you and your children. Find other families that might be going through similar issues. Knowing you are not alone and having support goes a very long way.  People who make life harder for you and your special needs children just aren’t worth it.
  • Don’t worry about what others might do. When it comes to special needs, you might have a lot of choices. Go with your gut here. What works for one kid with autism might not work for another. Talk to your doctors, therapists, school and your spouse to figure out what is best for YOUR child. If you feel your kid has a certain issue and people tell you not to worry but you can’t let it go, get it checked out anyway. I really think Moms know if something is going on with their children. Don’t doubt yourself.

Are you raising special needs children too? What would you add to this list?

Should We Stay or Should We Go

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When someone joins the Military, they don’t sign up for 20 years right away. Usually they sign-up for 3-4 years and then re-enlist every 3-4 years for a while. They do eventually get to a point where they can re-enlist indefinite. But until that time they really do get a choice about if the Military is in their future or not. When my husband re-joined the Military in 2005, we told ourselves we would try it for three years and see how it goes. Despite a long 15 month deployment, my husband re-enlisted for 5 years in the Spring of 2009. We felt it was the right thing to do at the time.

military familyNow we are getting closer to him having to make a decision about his future in the Army and we are finding it is not an easy decision to make. There are a lot of factors to consider. For one, can we as a family really keep going through deployments like we have been? This every year or even every other year thing is not good. It is possible that things will die down a bit and he won’t have to go as often in the future but I am not holding my breath.

We have our son to think about. How will Drew handle future deployments? How will I be able to stay strong acting as a single parent? The one thing that I felt during JRTC was that I need the support of my husband in dealing with our son. I can get all the outside support but when it comes down to it I need him. If he is overseas and I don’t really have much of a chance to communicate regularly with him, how will I be able to handle that? Would years of going through that tear me down?

Then there is the money issue. The Military is a steady paycheck with healthcare. My husband didn’t go to college and doesn’t really have another career waiting for him. He is in the Infantry and that is where he has all his training in. Should we give all that up to figure something else out? Ideally I would make a full-time income from home. That is the ideal and what I am working for. But what if I can’t do it? What if I fail at it? It would be a huge change for our family. For the past 8 years I have been the one to be in charge of the kids, the meals and the house. Right now it seems ideal but what if it really isn’t? What if having him home so much and having him take over everything I have been in charge of for years throws us for a loop?

There is so much to think about. So many pluses and minus on either side. I don’t want my husband to be in harm’s way. I don’t want him missing parts of my children’s childhood but what if staying in the Army is the best choice for him?

Have you been unsure about your future as a Military family?

What having a child with Asperger’s really means

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My son Drew was given the diagnoses of Asperger’s last January. We have known for a year that this is officially what he has. That it is why he acts the way he does, thinks the way he does and is the way he is.

Each day is different. Some days are okay, some days are happy, some days are sad, some days are way too difficult. Add having my husband gone for lengths of time and I get beyond stressed out sometimes.

What does having a child with Asperger’s really mean?

* That if your kid wakes up and something doesn’t feel right to him, you better take care of it before he leaves for school. If you don’t, it could ruin his whole day. The littlest thing could ruin his day. When my Mom came in late Wednesday night, I told her to wait in my room until he left for school Thursday morning and she could say hi to him after school. Why? Because if he saw her he might freak out and that would make for a horrible day at school. It isn’t that he doesn’t like Grandma, it is that she isn’t normally in our home in the mornings and it takes him a while to get used to her.

* That I worry about him all day at school. If I have a doctor’s appointment, I worry that I will have to leave it to go pick him up. I can never 100% relax. I would never feel comfortable leaving Clarksville during the school hours. The frustrating thing about this is over the last six months of school I have only had to go pick him up three times. Yet I still worry about it. I worry I will commit to something and then have to back out of it. A few weeks ago I was watching my friend’s daughters in the early afternoon but we had to set up a backup just in case.

* That regular parenting rules don’t always apply. I hear people talk. About kids who hit. Kids that don’t listen. Kids that need to be spanked. Makes me cringe sometimes. Because of the way Drew is, normal parenting rules simply don’t apply. He isn’t telling me no because we never discipline him. In fact, before we knew what was wrong, we explained it by feeling like he was a kid who had parents who gave him everything he ever wanted and never said no. When in reality we weren’t like that. It was extremely frustrating. I am finding that the older he gets, the more he understands that he isn’t going to get everything he wants right when he wants it. And then when he doesn’t, it isn’t the end of the world.

* That I am careful about who we hang out with. Not everyone is understanding. I need safe people. I need to hang out with people who can understand that sometimes Drew doesn’t act like a regular 6 year old. I am thankful that I have found a good support group here. At least for now. Being a Military community, everyone moves but for now, we have some amazing friends here at Ft. Campbell.

When you have a special needs child, you see the world a little differently. What was important to you as a new Mom, probably doesn’t matter much anymore. I know that over the years my son will learn more about how to act. This makes me feel good and gives me hope that he can live a normal life.