Soldier's Wife, Crazy Life

Special Needs

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

by 4 Comments

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?

What You Can Do When You Are Overwhelmed With Your Child’s Special Needs

by Leave a Comment

What You Can Do When You Are Overwhelmed With Your Child's Special Needs

 

As a special needs mom, I get stressed quite a bit. If I am not worrying about my child, I am just tired from the day-to-day of making sure he is getting what he needs and that I am able to do what is best for him. Somedays I just get overwhelmed by it all.

Do you ever feel this way? That it is just too much and you are not sure what the next step is? Or that you just don’t think you are capable of helping your child in the way they need it?

I think we all feel this way from time to time. What can we do about it? Crawling into bed and sleeping for 12 hours isn’t really an option. Here is what you can do when you are feeling overwhelmed with your child’s special needs-

  • Remember how far you guys have come. Think back to when you first got the diagnosis. Think about the positives. For us it is very much a two steps forward, 1.5 steps back type of thing. If I look back at where he was a year ago or two years ago, I can see we are making progress and remembering that can go a long way in helping me work through any frustrations.
  • Find your people. They don’t even have to be people who have special needs kids too. They just need to be people who can understand and be supportive. That you can lean on, discuss things with and trust with your children.
  • Do more research. Sometimes it is helpful to look more into your current struggle. Or, to find a different way to approach something. The more information you have about it, the better you might be able to figure out a better way to handle it. Find good resources and don’t be afraid to ask questions to people who are in the know.
  • Plan a break. It might be hard to find some time to yourself, so you will have to plan it. I remember when my son was first being diagnosed another special needs mom told me that she goes out and spends some time with friends or by herself every Saturday. By doing this, she is giving herself the break that she needed. If she skipped a Saturday, she could feel it. Going out alone every Saturday might not be an option for you but something is. Take a look at your schedule and figure out when you can schedule some me time for yourself where your children are being taken care of by someone you trust. Even if you just go out and walk around the mall for 30 minutes.
  • Journal. Whenever I have any type of issue in my life, I journal it. It helps to get it out, to really think about what is going on and to get some clarity. Pick out a nice new journal, keep it by your bed or on your desk and try to write a little each day. It can also be a great resource to go through in the future when you are trying to remember what happened when.

Remember that feeling overwhelmed about special needs is normal. Figuring out a good way to handle it and work through your struggles is a good thing.

What do you do when you are feeling too overwhelmed?

Tales of a Picky Eater

by 2 Comments

 

Tales of a Picky EaterOh picky eaters! There are a lot of blog posts out there about how to help a picky eater, what you can do to prevent “making” one, how you shouldn’t be a short order cook, how your kids need to clean their plates, etc, etc, etc…

There is a lot of advice about what to do when your kid won’t eat everything you give them.

I am torn on all of this advice because as a child I was a very picky eater.

I hated chicken for the longest time. I remember I would walk into the kitchen and burst into tears when I saw my mom making chicken. Now I love it. Somewhere along the way I changed the way I felt about it.

I hated pizza until I was 12. Class parties were frustrating for me. I was good and can’t even eat the prize! Then one day, I think I was at a sleepover, I tried cold pizza and it opened up my world.

I used to just put salt on my salads. Salad dressing was nasty to me. Until sometime in college when I tried it again and realized I liked it.

I hated spaghetti until sometime in the early years of our marriage my husband made some for me and I loved it. I still have to eat it with salad and bread. It’s weird, I know.

Guacamole was always on the list of things I didn’t eat until I started craving it a few years ago. Now I can’t get enough.

So when my son tells me he can’t stand chicken or hates this or that, I get it. I really do. I still remember being forced to eat certain foods when I was three years old. It was very traumatic for some reason.

I have a couple of picky eaters myself. My oldest seems to get better and better every year which is good. My middle son, we have a party when he tries a new food.

My youngest seems to be the most open to things which is great.

Am I worried about the fact that sometimes I make different foods each night? Not at all. I have some rules. Sometimes they say, “well I don’t want that tonight.” If it is a food I know they will eat, I tell them that is tough because that is what is for dinner. I want them to try things sometimes. Most of the time, the older two say they don’t like it and we move on.

It could be that I am not a big cook. I have the standard things that I make and I think my boys are pretty used to it. So trying something new isn’t exactly an easy thing to do. But at the end of the day, I want my kids to eat. If it is only one type of veggie, oh well…at least they are eating a veggie. And someday that might be two or three different types of vegetables. Sometimes it is “kid” food, sometimes it is not. That is how we roll in our house.

I think when it comes to food, you have to do what you have to do. Depending on your kids and their own needs. I have friends who have kids with serious eating issues. They work hard to make sure they are doing what they can to get the right foods. They go to food therapy and it really helps to get them to add new foods. It isn’t always as easy as serving it and making them eat it. Sometimes you have to get more creative and figure out the best way to make it work for your own family.

Do you have a picky eater? Are you a picky eater too?

How I Knew My Son Had Autism

by 3 Comments

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

by Leave a Comment

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

by Leave a Comment

A7uM8JbaQZC6VndFyGsKhw

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

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?

Taking A Child With Autism To Church

by 2 Comments

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?