Soldier's Wife, Crazy Life

asperger's

How My Son With Asperger’s Is Doing In The Second Grade

by 15 Comments

Asperger's

How My Son With Asperger’s Is Doing In The Second Grade

My son was diagnosed with Asperger’s when he was five. That was in the middle of his preschool year. We started with ABA therapy right away. He started kindergarten a few months later. That was a challenging year. He had full-time ABA with him at school. 1st grade was similar only we encountered some other issues. However, other types of behaviors got better. It seems like it is two steps forward, one step back with him.

In the middle of last year I felt strongly that it might be a good idea to have him in the special needs class because of his Asperger’s. He was having quite a lot of behavioral problems. We also worked on having the school take over more than having ABA with him. This was an important step to me and something we were working towards. Towards the end of 1st grade things got a little better but I wasn’t sure how it was going to go for second grade. I knew the school was working hard with us to make sure he was getting the help he needed to get through each day. They also assured me that at anytime I can call an IEP meeting. When summer started I just knew that no matter what we would be able to figure out how to get through second grade.

Asperger's

Now we are about six weeks into the school year. Overall he is doing really well. I am thankful for this. He grew a lot during the summer and I could really tell he was a different kid than he was at the end of 1st grade, although with some of the same behavioral issues. He is in a regular class and that seems to be going well overall. Not so many behavioral issues, he gets on the bus a lot easier than he ever has too. His biggest issue is not wanting to do the school work he needs to do. We are making him do it once he gets home and that has been hard.

I am not sure how the rest of the year is going to go. We had an IEP meeting last week and will have another one after fall break next month. He has a list of goals and he is slowly working towards them. Some days are easier than others.

What we want for him is to know that school is important, that the work he does at school is important and that he has to go to school each day before he can play or relax. The thing about him is that if he doesn’t see the reason for it, he doesn’t want to do it. This was a major issue last year. He didn’t see why he had to go to school so he fought it a lot. I think this year he is understanding more how it works. You go to school Monday through Friday, then you have the weekends free. You go to school until about 3pm, do your homework and then you can do what you want. I think the more he understands this, the better he will be about school. I am hoping anyways.

Do you have a child with special needs? How is school going for them?

Life As A Special Needs Mom

by 1 Comment

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

by 2 Comments

IMG_4679

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.

What is ABA therapy?

by 1 Comment

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.

Asperger's

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 having a child with Asperger’s really means

by 7 Comments

auto-asperger-syndrome-how-X-see-216223

 

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.

 

 

 

Asperger’s and Kindergarten

by 6 Comments

Asperger’s and Kindergarten

I really feel like I need a vacation every single weekend. This is the third week of school I think and my son is having a hard time. This is normal and expected and I know this, but it doesn’t make it any easier for me.

Every morning once I get him on the bus, I burst into tears. It is always SO difficult. Then I hear how he is doing during the day through text or phone calls. The last couple of days haven’t been going as well. It is like he is realizing that this school this IS happening and not going away and he is going to fight against it as much as he can.

I am very very thankful that 1) We have an amazing ABA team working with him. 2) The school is really working with him. Excellent teacher and staff. I really think God made sure we bought a house for this school for a reason. THAT part of it is all working out.

I know how normal it is for an Asperger’s child to have trouble with changes in his life and this is a big change. Although he went to preschool last year, this Kindergarten thing is different and he has to go every single day. He was never a really clingy baby or toddler but lately he says he just wants to be with me. I went out for a walk last night and he flipped out. I think he is missing our time together. I can understand that and it is something a lot of new kindergarteners go through.

I struggle with thinking, “If Only…” about my life. I caught myself thinking, “If only he didn’t have Asperger’s. If only this wasn’t such a challenge for him.” and then I think about who he is and all the things he is and I get mad at myself for thinking that way. Yes Asperger’s is a hard and challenging thing to deal with but it is apart of who my son is. It will never go away and it just means he needs extra help with things like school. He doesn’t see the world like I do and that is hard. But he is a great little boy who loves Star Wars and Legos and playing with his brothers.

We were talking about what he wanted to be when he grew up last night. He told me he doesn’t want to be a soldier because the Army scares him. I told him he didn’t have to be a soldier just because his Daddy was. He could be anything he wanted to be. He decided he is going to grow up and invent new Legos. He already has a couple of great ideas. I told him that sounded like the perfect job for him.

asperger's

Even though deep down I know he is going to be okay and that he just needs more time to get use to school, my heart has a hard time with it. I feel sad that it is so hard for him. That he can’t just enjoy school like his brother does. That little things bother him. Things I might not even think could. And if I am honest I think I really just want everything to go smoothly. I want every day to be a good day for him. I don’t want to know he is at school during the day having a hard time. I cry a lot about this because I am his mom and really isn’t that what moms do? No matter what situation your kid is going through, if you are a mom and you know your child is having a hard time, you get upset about it.

My son will always have Asperger’s. Certain parts of life will always be hard for him. However, he won’t always have trouble getting on the bus. He won’t always have such a hard time at school. He will learn and figure things out. And I can be there for him. I can support him and make sure he is getting the best care that we can give him. Make sure he is getting the best tools he can be given to succeed.

I really have felt like a basket case lately and I am thankful that I have friends that support me and let me cry to them. This is a struggle but we can get through it. I know that we can.

 

 

 

Living with Asperger’s

by 7 Comments

Living with Asperger’sIt’s been three months since Drew was diagnosed with Asperger’s. Asperger’s is considered a form of Autism. I have accepted Asperger’s but having a hard time with the phrase, “my son has autism.”

Most parents start hearing about Autism before their child is even born. There are a lot of theories on what causes it. A lot of debate. It is something I have always been afraid of on some level. I think a lot of parents wonder about it. But knowing your kid is considered “on the autism spectrum” is so hard. I guess because when I look at my son I don’t see Autism. I do see a smart and healthy child that has a lot more challenges in life than another 5-year-old might have. Things bother him and I can never wrap my head around why.

A fork falls on the floor and it is the end of the world. I offer him the wrong cereal or the wrong brand of tortillas. I forget to put a napkin in his lunch. His teacher is absent for the day. His brother isn’t playing with the Lego the “right” way. He can’t find the pink nose for the Mr. Potato Head.

Things have to be a certain way for him or it really is the end of the world. I have to remember that his mind thinks so differently than mine. I have to remember that certain things other kids grow out of by age 5 he is still working on. He won’t understand certain things on an emotional level. He will have to learn the “rules” for how to live in society. He will memorize them and then know how to act.

He has a very hard time with “no.” If he doesn’t get something he wants he will spend hours sometimes trying to find a loop-hole to get it. For example he really wanted some Legos at the store. He knew we were going to go to Target on Friday. I told him several times that we could look at the toys but we couldn’t buy toys. Well he tried to explain that Legos were not really toys. When that didn’t work he went on to tell me that I should just put “Legos” on my list since we were only going to buy what was on Mommy’s list. He is super smart and tries so hard to figure things out.

He is also very literal. If we have breakfast and then he asks for ice cream and I tell him, “You can’t have ice cream for breakfast.” He will tell me that he already had breakfast. What I needed to say was that we don’t have ice cream in the morning.

He starts Kindergarten in the fall. We had our first IEP with his new school a few weeks ago and I am very happy with the team who will be working with him. It makes me feel good that we are on the same page. I am worried about the first few weeks of school the most since that is when everything will be so new to him. He has a hard time with new environments sometimes.

I do love spending time with him. He is so creative, I love it! He inspires me in different ways and I love watching him figure things out. He talks a lot about what he knows and although a lot of it can be repetitive, it is nice to see him passionate about things.  Some days are pretty average, other days are pretty difficult and every once in a while they get pretty hard. I feel good about the help he is getting and it is helping me as well. Just taking one day at a time with it. I am worried about our next deployment and having to parent alone. I know I have done it before but I just feel like things are so different now. I know when the time comes I will be able to make it through but I worry thinking about it.

Just one day at a time…

“I know God will not give me anything I can’t handle. I just wish He didn’t trust me so much.” (Mother Teresa)

 

 

A Diagnosis of Asperger’s

by 17 Comments

 

 

A Diagnosis of Asperger's- Soldier's Wife, Crazy Life

Back in October, I started the process of getting my son evaluated. I knew something wasn’t right with him. Once he started preschool in August it became clear that we needed to get him checked out. He will be starting kindergarten in the fall and I knew it would be important to know what was going on before then. I knew we needed to find that out so we knew how to help him.

At first, I wasn’t sure what could be going on. He has a lot of trouble changing from one activity to the next. He likes certain things a certain way. At first, we thought this could have been age but then he just wasn’t growing out of these behaviors. I started to notice how he would really focus on one thing. He would talk about whatever he was into a lot. Only want to play with that item.

Right now that is Lego Star Wars. He only wants to wear Lego Star Wars shirts. I can get him to wear the regular Star Wars ones but only because the Lego ones need to be washed. He only plays with his Lego Star Wars. He knows a lot about them too. We bought him an encyclopedia book on all the different Lego Star Wars you can get. He will talk all day about Star Wars.

He just doesn’t get along with other kids too well. This is hard because I am social, his brother is social and so we like being around other people and kids. Usually, he will either play by himself or play next to another child. Every once in a while, he will play with another child and I get so happy to see that. He will tell me things like, “They weren’t playing with it right, ” when he gets mad at another kid.

He is awesome about washing his hands after he goes to the bathroom but if we are somewhere else and he can’t find the soap, he gets really upset. He has to wash his hands. He will get pretty upset about the little things too, like when he drops a fork or a toy. It can be hard to know how to react. I have learned to stay calm myself and just say something like, “It is ok. Let’s get you another one.”

I would say we have been dealing with this type of behavior since he was about two or three. But in the last year, it has really gotten to where it felt like a big problem.

Today I found out that he has Asperger’s Syndrome. I was about 85% sure that was what he had after I did a lot of reading about Asperger’s.  I was right.

Tomorrow we will find out more information and start figuring out how to get him the right therapy. Right now I feel a mix of relief and fear. I am relieved that we finally figured out what was going on. I am fearful because I just don’t know exactly what this all means for him.