Soldier's Wife, Crazy Life

Special Needs

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.

 

 

 

Asperger’s and Kindergarten

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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.

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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

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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)

 

 

Is there something wrong with my child?

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Is there something wrong with my child?

Is there something wrong with my child???

Figuring out if something is wrong with your child is very difficult. As parents we want our children to be 100% okay. We don’t want anything to be wrong with them. We read the parenting books, we try to make all the right choices. Sometimes there is something going on but how do you know? How do you know they might be delayed or dealing with something other kids don’t have to deal with? How do you know you should take them somewhere to be seen?

It is a hard decision to make. We moved to the US from Germany when Drew was a little over three. I started him at the CDC and it was the really the first time he went anywhere that was like that. He had gone to the church nursery a few times and a couple of times at the CDC in Germany for one time events but nothing regularly. He didn’t do so well at first. I brought it up to the doctor and she thought he was just getting use to the new place. I wasn’t totally sure it was that but I wasn’t totally sure it wasn’t either. Looking back it really was the first signs of his Asperger’s but we didn’t know it at the time.

This past August I asked a different doctor about him. I brought up some of my concerns. She asked him a bunch of questions and felt he was fine. Maybe just his personality. At this point I just wasn’t sure what to think. By October I knew it was much more than just his personality. Things we thought he would have grown out of by almost five he hadn’t. I decided to call the doctor and just ask for a referral to see the Behavioral Doctor on post. I had heard he was excellent. From that I was directed to CAPS which is also on post. That is where we met with a doctor and got the diagnoses.

It has been a road, although not as long as it could have been. Looking back it is a lot more obvious that something was going on. But it isn’t always easy to tell when you are going through it.

I really do think moms know if something is going on. You just know deep down that something isn’t quite right. Sometimes the doctors might not see it at first. Sometimes you just have to keep at it to find out what is wrong

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Before I took my oldest in to be tested I told myself that either 1) They will tell me he is fine or 2) There is something going on and we could start to help him. I tried not to worry although it was hard. I tried not to imagine the worst, although that was hard too. I just knew I had to do something about the feelings I was having.

Have you been through this? What advice would you give to someone who wasn’t sure something was going on with their child?

A Diagnosis of Asperger’s

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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.