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 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.

Give Forward and Erase Love With Hate

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I was saddened to hear the story of a 14-year-old boy with Autism who was bullied by a group of kids in Bay Village, OH. The boy was going to do the ice bucket challenge but instead of pouring a bucket of ice over his head they filled it with urine, feces and spit. Not only did they do this but they also videotaped it and put it on Instagram. What a horrible thing to do to someone. Bullying can be such an awful thing. As a parent of special needs children, I worry sometimes that they will be bullied and it makes me so sad when I hear it being done to other kids.

The organization, GiveForward heard the story as well and decided to do something to help. They started a fundraiser for the boy. The goal was to raise money for the family as well as creating a page full of support that they can read and be encouraged by. I know it is helpful to know that others, even strangers are on their side and feel for them. That most people are not okay with what happened to their son.

giveforward-hiresGiveForward provides free online fundraising pages allowing friends and family to raise money directly for a loved one when they need it the most. You Can set up a page in minutes, share it with friends and instantly create a community of support. It is a great way to be able to help other people. They want to be able to prove that there is more love in this world than hate.

In today’s world, 98% of the time we stand by idly and watch life go by. When we see a tragedy or injustice on the news, we say “what a shame” and then we flip the channel and proceed to do NOTHING about it, as we expect someone else will step up and help. There’s an actual psychological term for this. It’s called bystander apathy.

We also know that when people don’t stand around being bystanders, magic can happen. We saw it when a bomb exploded at the finish line of the Boston Marathon and this nation made a collective decision that we were going to do something about it.

One of the many fundraisers started at that time was for a newlywed couple, Pat and Jess, who lost their legs in the bombing. Friends, family, and so many that were outraged by what happened that day were able to raise almost $900K for them, making sure that they would never have to worry about any of their medical expenses as they deal with their new life with prosthetic legs.

As you can see,  GiveForward has done to help people be able to give back.

You too can help by donating to the fundraiser, leaving a message and just choosing love over hate, no matter what you encounter in your daily life. Love goes a lot further than hate ever will.

 

* Disclosure of Material Connection: This is a “sponsored post.” The company who sponsored it compensated me via a cash payment, gift, or something else of value to write it. Regardless, I only recommend products or services I use personally and believe will be good for my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

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

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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?

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 😉