Soldier's Wife, Crazy Life

asperger's

A Letter To My Son With Autism On World Autism Awareness Day

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In January of 2012, we sat in the doctor’s office and heard what we had suspected about our then five-year-old son. After three or four months of testing, meeting with the doctor, and answering questions about him, our son was diagnosed with Asperger’s.

As we were waiting to hear what his diagnosis was, I did my own research and came to the same conclusion. It was the only thing that made any sense. My biggest fear going into that appointment was not that he would tell me what was wrong with my son, it was that he would tell me nothing was wrong because I knew in my heart something was.

Asperger’s. Autism. High functioning Autism. A different type of life. Special needs. ABA. Fits. Misunderstandings. Love.

On this day, April 2nd, World Autism Awareness Day, I wanted to write to my son. He is 14 now, and we have come so far since that day in 2012, but I know that we have a long way to go.

I wrote this letter to him when he was 11, right before we started into the teen years.

A Letter To My Son With Autism On World Autism Awareness Day

To my little boy,

First of all, I have to tell you how much I love you. I still remember the day you were born, right in the middle of your Dad’s deployment. I remember they gave you to me and we had to wait for them to move us to the recovery room. And when it was time to do that, they wheeled us there on the bed, and I felt like a queen in a parade, holding my new bundle.

That day, that night, I had no idea what our journey of mother and son would take us. Would you be like your older brother? Would you be like me? Like your dad?

As you grew, I watched you closely. I was concerned about speech delays, which your brother struggled with. But you didn’t seem to have any issues there. You started talking, and I thought everything was going along the way things should.

Then we moved to Tennessee, and as you grew from a young toddler to a preschooler, my mommy heart started to worry. I began to notice how hard playing with other kids was. Sometimes you destroyed the castles they had built out of blocks. Sometimes you yelled at them. Sometimes you hit. And when we asked you why you told us it was because they were doing it wrong.

I wondered what I was doing wrong as a parent. I wondered what else I should be doing.

Then I told myself all kids could hit at that age. Preschoolers aren’t exactly known for their sharing abilities. I told myself that you were having a difficult time because you had never been to daycare before, that you were just not used to being around so many kids. We had playdates, but I didn’t leave you as often back then.

As you started at a regular preschool, I knew in my heart something wasn’t quite right. I knew you were struggling there. But why? Why were you always getting in trouble? What was going on?

That’s when we decided we needed to figure out what was going on. Your regular doctor didn’t think anything was going on at first, but I pushed. I had to. I needed answers. And then that day in January, we got them.

Asperger’s. That is what you had. That was what you would be dealing with. That is what would make you you.

We started with ABA, and they helped us so very much. You started kindergarten and with that all types of new challenges. You didn’t want to go to school; you didn’t see why you had to be there.

But we worked hard, so hard. The years went by, and as they did, I got to watch you grow. Before, when the bus came to pick you up, you would resist. Now, you run out there on your own.

This isn’t to say we don’t still have challenges, we do. But what once was an everyday struggle, changed to once a week and these days more like a once a month of that type of struggle. As I look back over the years, I know you are going to be okay because we have come so far already.

I know that school is hard for you, but I also know that you can do school. You can get through it, and you can make it work for you.

I know that making friends is hard for you too, but I also see that you want to reach out and that you will find your people too. I know you will.

I am so thankful you and your older brother are best friends. I hope that you can have that with your younger brother someday too. Your brothers will always be there for you, they have your back, and they want the best for you too.

I love seeing you excited and happy about something. Sometimes that is Disneyland, other times it is when you figure out how to get through a video game or when we stop and check out the cats at the pet store.

I know that you have your dad’s sense of humor. Sometimes this is hard to see, through the everyday struggles, but it is there.

I know sometimes life is harder for you than it should be for an 11-year-old.

On those days I wish I could grab you up and take you away from all the hard things life brings. But the truth is, you need to work through them. But as you do, you know you will always have me by your side. I will always be there to listen and to help you get through it, whatever the struggle might be.

I am not sure what life will be like for you as an adult. I am not sure what will be hard for you and what won’t be a challenge anymore. I do know that you will go on and do great things. I know this. 

I am so proud of how far you have come. You work hard to make your way in this world, even when you don’t understand it. Even when it doesn’t make any sense to you.

Always remember that your Dad and I love you and will always be there for you. To walk with you through this life, and be there to help when we can.

Love to you forever,

Mom.

Do you have a child on the autism spectrum too?

How Raising a Child On The Autism Spectrum Helps Me As A Military Wife

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How Raising a Child On The Autism Spectrum Helps Me As A Military Wife

Raising a child on the autism spectrum has taught me a lot over the years. There are so many lessons to be learned when your child needs a little extra help and a little extra patience. Some of these lessons have helped me as a military wife and through the years of everything that comes with being a military family.

How Raising a Child On The Autism Spectrum Helps Me As A Military Wife

Life doesn’t always look the way you think it should

One of the biggest lessons I have learned by having a child on the autism spectrum is that life doesn’t always look the way you think life will. Your children will surprise you. You will do things differently than you thought you would.

Military life is the same. You can’t really plan what your military journey will be like. You won’t be able to tell when your husband joins the military, how many times your spouse will deploy or how many times you will PCS. You will have to change your way of thinking so that you are not frustrated by every little thing military life brings.

Not everything is going to be “Pinterest” perfect, and that’s okay

There is a certain type of pressure in this social media world to make everything “Pinterest” perfect from our kid’s birthday parties or snacks for their class. With a special needs child, a lot of what you do is simply making it through the day making sure they have what they need.

The same is true with military life. Somedays you have to just make it to the finish line. Others, you might have a little more time, but please remind yourself, not everything has to look like it does on Pinterest.

How Raising a Child On The Autism Spectrum Helps Me As A Military Wife

Don’t sweat the small stuff

As a mom of an autistic kid, I have had to let a lot of things go every day. I have to pick my battles. Not everything is worth a fight. I simply do not have the energy or even the desire for it.

As a military spouse, I also am not going to worry about every little thing. I am going to do my best, make the right choices, and go from there. Trying to worry about everything is going to burn you out.

You need to ask for help

This has been the hardest thing for me to do. Asking for help. I want to do everything by myself. But there have been plenty of people who have helped my son along the way. Without them, I am not sure where we would be.

Being a military spouse, there are of course times when my husband is not home. For the most part, I can handle what comes my way by myself. But sometimes, I do need that extra help. And I shouldn’t be afraid to ask for it.

How Raising a Child On The Autism Spectrum Helps Me As A Military Wife

Good friends are a must

Over the years I have made some pretty amazing friends that have been a good support system for me and my kids. They are understanding of my son’s autism and have helped me through the journey. I am not sure what I would have done without them.

In the same way, finding good friends has helped me as a military wife. From being other people who get what we go through to being a listening ear. Good friends are a must for so many reasons.

Whether you have special needs kids or not, they are always going to teach you something. You will learn through parenting them, and that will be a good thing. Even if it feels like you are not doing everything right, you can still grow from the process.

Do you have kids on the autism spectrum too? What have they taught you?

Back To School With Special Needs

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Back To School With Special Needs

Back To School With Special Needs

Summer is almost over for us. The boys go back to school next week. My son with Asperger’s is going to start 3rd grade! I find that a little hard to believe. It seems like we were just getting ready for him to start kindergarten. What a nervous mom I was that summer. We were working with our ABA therapists to get him ready for school. He had been in preschool but kindergarten was something else. We were able to get a schedule of what his school day would like ahead of time and went over it with him.

He started school and that year was challenging. He started 1st grade and that was another challenging year. The summer before 1st and 2nd he really matured a lot. He was not the same kid when he went back to school. 2nd grade was a lot better but still had its challenges. We went from having to worry about him acting out to worrying about getting him to do his work. That was a big change because it involved two different things. He was not acting out as much which was great but he was refusing to do some of his work. It wasn’t that he couldn’t do it, but he is a bit of a perfectionist, so if he didn’t feel like he was doing it 100%, he would freak out and not want to do it at all.

We are working with a good team at his school. A few of them have known my son since he started at the school. It is one reason we are still in Tennessee. I worry that when we move, we will have to start over a bit and that scares me. Right now it is working and I don’t want to mess with that at the moment. Although I do know that there are plenty of resources for kids with Autism where we are planning to move to.

As we get ready for third grade I am feeling pretty positive about it. I have seen him mature a bit over the summer. He is no longer acting out just because someone does something he doesn’t like. He still does this sometimes but not like he did. I can tell he is really working on that. He is being more helpful around the house too. Things just seem a little more calm which is good.

So as we look into starting third grade with Asperger’s, I am excited about the year. However, I know there will still be challenges. He might not want to do all his work, and we will have to find a way to make sure he does and starts to understand that he needs to get it done. He might not get along with everyone in his class. He might wake up one morning and decide he does not want to go to school that day. I am trying to prepare myself for however the year is going to go.

Having a child with Asperger’s is challenging in so many ways. But we just have to work through them. I am glad I have a good team of people we are working with to help my son have a good year. It will be challenging at times, we will have a lot of IEP meetings and there will be a lot of tears on my part I am sure. But it will all be worth it so that my son can get a good education and can learn about how to do well in school.

Do you have a special needs child getting ready to go back to school? What are your biggest fears about it?

How I Am Helping My Son With Asperger’s Through Summer

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Asperger's

Having a child with Asperger’s means summer can be quite a challenge. There will not be school and a regular routine so you have to make one. There are a lot of activities for kids but they might not be right for your child. It can be difficult to decide what to do.

I have come up with a few things to help this summer. My son is eight and if I let him he would spend the entire summer playing video games. I have to really try hard to get him interested in other things.

1) Pool time. He told me he loves the pool. So that was part of my reason for getting a pool pass this year. We can go whenever and stay for however long and it is fine. We can go almost everyday. He will also do swim lessons in July.

2) Daily chore. I require my boys to do a daily chore during the summer before they can play any video games. This works really well for my son with Asperger’s and he is usually the only one of my three to ask about the chore vs me telling him. I base the chores on what needs to be done around the house. Does the living room need to be picked up? Can you help me with the dishes?

3) Snacks. My son is a very picky eater and I learned that I need to make sure I have a snack for him that he will eat. While my other two will pretty much gobble anything down that I pack I have to make sure to include something he will actually eat. If I don’t, he gets a little grumpy. Not full on meltdown mode but still. It just makes things easier. I pack snacks and drinks every morning so we always have something on hand when we go places.

4) Days at home. This is a hard one. He craves a full day at home when he doesn’t have one for a while. I get it, I really do. I somtimes need that downtime as well. I am trying to balance that one out with daily activities outside of the house. I think my plan is to stay home on some days when we don’t have plans and the weather is bad. This will help him and help me handle him a little better.

5) Listening. As you probably know, when someone has Asperger’s, they tend to talk about what they are into all of the time. I am really trying to listen to my son this summer because he gets really excited about certain things and I want him to know that I care. It’s hard sometimes because I am not always interested in what he is interested in but I am trying my best to listen and hear what he has to say. I also ask him how he is feeling about the week. It gives me a good idea of how he is doing and what type of mood he is in depending on the types of activities we did.

What about you? Do you have a special needs child home for the summer? What are you doing to help them during their time off from school?

Two Steps Forward, One Step Back When Raising a Special Needs Child

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Two Steps Forward, One Step Back

When my oldest was diagnosed with a developmental delay, I knew that someday he would grow out of it. Then a few years later my 2nd little boy was diagnosed with Asperger’s. This was a whole different ball game. He would always be autistic. That would never ever go away.

However, that doesn’t mean we don’t make progress or that he never improves. It means that we will work with him over the years to be able to grow and learn how to live in this world.

We started with ABA therapy and now we have a great team who work with him at school.

When I look back at where he has been, we have made some amazing progress. For one thing, he gets on the bus like a pro. He used to just stand there refusing to get on it. I also used to get calls a lot of the time that he was having a horrible day or that he needed to be picked up. Things have been so much better this year in second grade. For one thing he matured so much over the summer. It was only 2.5 months but he seemed to really start to get the whole school thing.

That is why yesterday I was in for a shock when the bus tried to drop him off and he wouldn’t get off because he had a bad day. The school tells me what happens and it gets sent home in a folder. He knew he would not be able to play video games and earn a token for his day. I was able to get him off the bus and he was in tears. I had flashbacks to 1st grade and started to panic.

“How will he finish the end of the year? We still have 2.5 weeks to go?”

“How will he get on the bus in the morning? He is refusing to go back to school.”

“What did I do wrong? Everything was working. It was working!!!”

That is what flashed in my mind when we got into the house. I was worried. I just didn’t know where this was coming from and I wasn’t sure how I was going to calm him down.

I took a few breaths and remembered that we have come a long way and that with Asperger’s, it is very much two steps forward and one step back. And that’s exactly what this was, just a step back.

I talked things over with my son. We talked about what went wrong, why he got so upset and what we could do to make it better the next day. Within about 30 minutes he was calm and eating his snack. He assured me that tomorrow would be a much better day. I hope it is, but even if it isn’t, I know we have come such a long way with him and that this is normal. It is all a part of him figuring out the world and working on his behavior. I also have an IEP meeting later this week so I can bring up what happened. We will also be planning for third grade which makes me a little nervous.

I am hoping that he will mature more over the summer like last year and that third grade can be a great year for him. I don’t want him to always hate school and I don’t think he really does but it is hard to hear when he is having such a frustrating day.

Two steps forward and one step back is such a part of his journey. It probably always will be.

Do you go through this with your special needs child?

How I Knew My Son Had Autism

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How I knew my son had autism

 

“Well after looking at everything I feel comfortable in diagnosing him as having Asperger’s which is on the Autism spectrum.”

This is what the behavioral doctor said to us after three months of testing. We were not surprised.

This was in 2012 and now they have eliminated Asperger’s as a diagnoses but from what I understand, Drew is grandfathered in and is still considered to have it.

We started to think something was a little off when he was four. He started preschool for the first time and was having a lot of trouble with it.

His older brother had been diagnosed with a developmental delay when he was three. This was something that our world seemed to be revolving around when Drew was born. As he grew and started to talk, I thought he was okay. He was saying more when he turned two then his brother was at four. He had to be okay.

He walked late, at 15 months but that isn’t something to be concerned about. He hit all the milestones he was supposed to.

Before we moved back to the US he had only been in childcare a handful of times. So at first, I thought that was it. He just wasn’t used to being in that setting. Once he got going with it he would be fine. When I brought it up with his regular doctor, that is what she said too.  But he wasn’t fine. He didn’t want to do what he was supposed to do. He would get mad when it was time to change from one thing to another. I started to cringe when I would walk into his room to pick him up wondering what he might have done that day.

I started taking him to hourly care on post which was great. The staff there figured out how to work with him a little bit. So if I wanted to go to PWOC or MOPS I would put drew in hourly since I knew they would have less issues with him there. I would also prep him a lot in the car on the way there. We would go over what was expected and how he should act.

It was then I started having this feeling like something was off. We had an almost four-year old and in a lot of ways he was acting like a two-year old. He would act like a kid who was never told no in his life and that clearly wasn’t how we were raising him. It was so frustrating for us. In the back of my head I knew something wasn’t right. Then we talked more with the teachers and knew we should have him be seen.

I have always believed that moms always know. I knew something was going on with Daniel. I have talked to other moms and they just “know” something is going on with their kids. If you think something is off with one of your children, go in and see if you can find out more. What is the worst that could happen? And the sooner you can find out what is going on, the sooner you can help them.

So we started the process in October of 2011 right before he turned five. During the few months we had different appointments and filled out a lot of paperwork. The doctor met with us, heard our concerns. He met with Drew. He had his teachers fill out a lot of paperwork and Ben and I did as well. Then he met with us again. During the months while we waited for the diagnoses I started reading a little bit about Asperger’s. I was drawn to this as the reason my son was acting the way he was. I didn’t know too much about it other than hearing stories from friends. I then read a little bit of Look Me in the Eye by  John Elder Robison. The first chapter talks about how as a child he would hit his friends for “not playing right.” BINGO! That was Drew. He would get so mad if another child didn’t play right.

Asperger's

By the time we went for the diagnosis. I already knew. My son had Asperger’s. My son had Autism. I knew because he had trouble with no. I knew because he had a “list” in his head of how his day should go and anyone who told him differently was mean. I knew because he was different from the other kids. I knew because he liked to talk over and over about Star Wars or Legos or whatever it was in he was into. I knew because one day he played with a Lego car on the stairs all day long. I knew because he liked certain foods a certain way. I knew because he had his chair and didn’t want anyone else to sit in it. I just knew.

And these days, as we work through the issues we need to work through, I can see more and more how Asperger’s affects his life. How it will make it harder for him and how we as his parents have to do things a little differently because of it. He has come a long way from his preschool days. We have worked hard with ABA , at home and with his school. I know we have a lot of challenges ahead but I am thankful for that diagnoses because it helped us know exactly how to help our son do what he needs to do to get through each day.

Do you have an Autistic child? Did you know they were before they were diagnosed?

Dear Asperger’s, You Can Shove It

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Living with Asperger'sMy son has Asperger’s. We have known this for almost three years now. It has been a challenge for us, some days more than others.

I don’t have Asperger’s but I sometimes can understand why he feels the way he does. Why he gets so frustrated. I get it. Not 100% and not to the degree that he does but I can understand a little bit.

I get why he gets so frustrated when things don’t go the way he thought they were going to go. It is almost as if he wakes up every morning with a list of what is going to happen that day. And if things don’t happen the way he wants them to, he has a very hard time. Some days he wakes up not wanting to go to school. So then getting to school is a problem. It wasn’t on his “list.” The older he gets the more he will understand that there are certain things he has to do each day and school is one of them. We have already seen some improvement with that but still have a long way to go.

When it comes to food, he only likes certain foods. More than just one or two which I am thankful for but still, it can be frustrating sometimes. Like tacos. He loves tacos we make from home but try to offer him a taco from a restaurant and forget it. He has serious hate for Taco Bell too, which happens to be his brother’s favorite place to eat.

He has a few snacks he likes and wants to have each day. Apples, tortilla chips, milk and yogurt if we have it. He might eat crackers or goldfish but it depends. Carrots he will eat with dinner but never ever as a snack.

He can’t stand certain things and sometimes it seems quite random to me. But I am sure he has his reasons, even if we don’t understand them.

It’s hard for me as a mom sometimes. The other day he was having a lot of trouble with getting to school and I just broke down about it. Why doesn’t he get he goes to school each day? Why? It could be something as little as his brother asking him the wrong question. We can talk about it and sometimes he will tell me. That helps but it is still hard.

Sometimes I catch myself thinking about how different things would be if he didn’t have Asperger’s. Then I feel bad because he is who he is because he has Asperger’s. He would be a different kid if he didn’t have it.

At the end of the day I know that he will be okay. He will figure out school and will eventually learn how to act right even if it is hard for him. He will start to figure out the world. But even so he will still struggle. He might always hate non homemade tacos and my never be able to get over it when someone says certain things. But hopefully he will be able to learn how to act and be able to handle it better than he does today.

Some days I just need to tell Asperger’s to shove it. To yell at it and tell it that it is making my little boy’s life really hard. But that won’t do anything but make me feel a little better. Because Asperger’s will always be with him and we will also be there to help him through it. The best way that we can.