Wednesday, May 25, 2011

Sometimes I hate Autism.

I adore my son. Sometimes I hate Autism. Why? I hate that it makes my son angry. I hate that it effects his ability to make friends. I hate the fact that he can't tell me how he is feeling. I hate that people stare when he's upset or making funny noises. I hate it when we are around typical 5 year old boys and I feel blindsided all over again. I hate that I have to worry about his future. I hate that my son can't just be a typical boy and have play dates, play sports with his dad, tell us about his day, tell us a joke, tell me what makes him happy, tell me if someone was rude to him, tell me he has a "girlfriend", explain to me why he is crying and upset. 

I love my son more than anything. Sometimes Autism just plain sucks!! 

I'm sure I'll feel better tomorrow, but this is how I feel today...

Friday, May 20, 2011

Jaxton's Last Day of Preschool!

Today was Jax's last day of preschool. I'm feeling a tad bit emotional about it. My baby boy will be in Kindergarten next August!! He will be in an Autism unit with kids K-2nd grade. So, it's different than regular Kindergarten...but my baby is still growing up; nonetheless. 

 We went to Jax's school today to watch a dvd his teachers put together of pictures throughout the year. It was so cute and sweet. They had so many adorable pictures of Jax. Each child was given an award which stated what the teachers love most about that child. Jax's award was "Best Comic Entertainer". It describes him perfectly. They call him Jim Carey in class. All of the teachers came up to Josh and I and were telling us how they can't help but be happy and laugh when Jax is around. One teacher said, "whenever I'm having a rough day, all I have to do is come to class and Jax makes me happy and makes me laugh."  I love hearing that. 

Watching Jax's teachers with him today makes me even more sad that he will be moving on to a new class. You can just see how much they love and adore him. They were hugging him and telling us how much they love and will miss him. I have to would be dang hard not to fall in love with this boy!! 

We will miss his teachers SO much but I am looking forward to next year. A new school year means more progress and that is exciting. 

Sunday, May 15, 2011

Autism Siblings

I want to talk a little bit about the siblings of Autistic children. I often wonder how my oldest daughter feels about her brother. I wonder how much she realizes. I wonder if she ever feels like we spend more time with her brother. I don't want her to ever feel like she is being put on the back burner. So, to make sure that doesn't happen, we do several things.

First, we take our daughter on dates. We want her to always know and feel that she is special. My husband or I will take turns going to dinner and a movie with her. She loves this. This past Friday night, I took her to Soul Surfer. It was the perfect movie for her to see. While watching it she kept making comments like, "mom, if we do our best and never give up, anything is possible!" I'm so proud of my little girl. She is growing up so fast. As she gets older, it is so much fun to hang out with her. We love our dates.

We talk to our oldest daughter about how special she is. We remind her that she was our very first baby and how first babies are sooo special. Every night, I like to go into her bedroom and remind her why she is so special. I tell her how sweet, kind, smart, funny and beautiful she is. She usually adds, "I know mom. I'm amazing." She really is amazing and I'm glad she knows it.

Another thing I think is important is to educate the siblings. We've talked to our oldest daughter quite a bit about Autism. We explain to her what it is, what it means. We let her ask any questions she may have. I think this really helps her to better understand her brother. It also gives us a chance to talk about it as a family, which is nice.

Our other children are just 2 years old and 5 months old, so they are too young to get it...but our 2 year old loves playing with her big brother. She looks up to him. They laugh together, chase eachother, talk to eachother. They are buddies. I pray that friendship and love they have for eachother will continue as they grow.

The IPAD and Autism

We've read about how awesome the ipad is for kids/people with Autism. It can be used as a communication device, a learning tool, and so much more. We bought one for Jax and we are so excited to see how it can help him. We bought this app to help Jax to communicate and increase his vocabulary. It's supposed to be an excellent tool for kids with Autism. We are excited about it! I will have to keep you all updated and let you know how it's going.

Temple Grandin

Have you seen the Temple Grandin movie? If you haven't, you MUST see it! Claire Danes stars in it and it is a phenomenal movie. It won 7 emmy awards! Josh and I watched it together and we cried and laughed throughout the entire thing. It's funny, it's sad at times, it's real. You get the opportunity to really see what it's like being a person with Autism. Dr. Temple Grandin is a world-famous animal scientist and autism self-advocate. She has written many books and teaches seminars about Autism all over the world. Temple didn't begin speaking until she was 3 and a half years old. She is incredibly intelligent. It is such an amazing thing for parents like us to be able to hear and learn so much from someone who has lived with Autism. To learn more about her, visit her website here!

Sensory Processing Disorder

A large percentage of children with Autism also have Sensory Processing Disorder. Jax does have SPD as well. Here is a list of symptoms of SPD. Jax has every single symptom on this list. This is why learning, attending to activities, being in loud environments, etc are difficult for him. Reading this list, you can see why!                                                  

•        Over sensitivity to touch, movement, sights, or sounds
•        Under reactivity to touch, movement, sights, or sounds
•        Specific learning difficulties /delays in academic achievement
•        Difficulty in making transitions from one situation to another
•        Tendency to be easily distracted / Limited attention control
•        Activity level that is unusually high or unusually low
•        Social and/or emotional problems
•        Difficulty learning new movements
•        Delays in speech, language, or motor skills
•        Physical clumsiness or apparent carelessness
•        Impulsive, lacking in self-control     
•        Inability to unwind or calm self
•        Poor self concept / body awareness

Autism rates may be higher than thought...

In a recent South Korea study, researchers have found that 1 in every 38 children are on the Autism Spectrum...and we thought 1 in 110 was huge! Because of the study being much more accurate than the studies done in the U.S., they believe the number of kids on the spectrum could be just as high, if not higher, in the U.S. We need to be doing much more comprehensive studies here. There has been such an incredibly high increase in Autism over the past few years and we need to find out why!! 

Here is the study that was done in South Korea.

7 year old with Autism sings National Anthem at NBA game!

My wonderful sister-in-law shared this video with me. It is a video of a 7 year old little girl with Autism singing the National Anthem at a NBA game. I cried when I watched it. It shows the passion these little kids can have for something they love doing. It also shows that while these kids have struggles, they are so talented and can achieve things we may not think possible. This little girl was in Music Therapy when they realized her talent. She is amazing and sooo adorable! To see this video, go here. You will love it!

Walk Now For Autism Speaks!

We have formed a team for Walk Now For Autism Speaks in October. Our team name is Joggin' for Jaxton. :) Any donations you can give would be wonderful. It all goes to Autism Speaks. Even 1 dollar helps!! If you'd like to donate, go here. If you'd like to join us on our walk in October, go here! Your support means SO much to us. Feel free to email or call me if you have any questions!

How Jax is doing today...

Last August, Jax was enrolled in a preschool for Autistic children. It has been so good for him. His teacher and aids are amazing!! They know exactly what they are doing and work so hard for these little kids. Jax has been progressing in speech therapy and occupational therapy. He is now using a lot more meaningful words and less jargon. He still struggles a lot with attending to activities, but is doing so much better. His goal at the beginning of last August was to be able to attend to an activity for 10 minutes. He is doing that now with the help of his teachers and a weighted blanket to address his sensory needs. He can sometimes attend an activity for 20-25 minutes at a time which is HUGE for him. He is beginning to ask questions to people other than my husband and I. The other day, he noticed my mom wasn't wearing her glasses. He said, "Hi Grandma! Where's your glasses?" It made me smile. It was awesome to see that he noticed she wasn't wearing glasses AND the fact that he asked a question! So cool. He is also greeting people now...on his own. He is trying to initiate communication with people. When walking through the store, he will wave and say "hi!" to people as they pass by. If they don't answer him, he will say it again until they respond. I was telling this to his teacher and she said, "it sounds like the adults who ignore him are the ones who need to learn how to be social and communicate!" Ha! So true. He is trying and he is learning. He still struggles with speech, communication and socially, but he is doing better all the time. He will be enrolling in an Autism Unit for kids k-2nd grade. He is not ready to be mainstreamed, but we know he will be some day. :) We are happy with his progress. We will REALLY miss his current teacher, but I'm sure the new teacher will be wonderful too. It is so hard to know what the future holds for our little boy, but whatever happens, I know he will do great things.

Getting a diagnosis: Part 2

If you missed Part 1, go HERE. 

After receiving the results of the testing on Jax, we enrolled him into a special needs preschool. His teachers were awesome. They tried really hard to fulfill his needs and give him all of the help they could. Most importantly, they loved him. I could see the love these beautiful women had for our son and it made it that much easier to let him go each day. It was rough having my barely three year old away from me every day, but it was the best thing for him. He needed it.

During this time, I started researching and researching. I came across some information about Autism. At the time, Jax did not have many signs of Autism, but he did have a few. He had the severe speech delays, he wasn't very social, and he had a hard time expressing himself. I began wondering if he could be on the Autism Spectrum.

About six months into preschool, I was speaking to Jax's teacher on the phone. She was explaining to me that while progress was very slow, he was making progress. I asked her if she has noticed anything that would make her believe Jax was Autistic. She said, "Yes, I have. I was hoping you would bring this up. I have noticed things like him having a hard time making eye contact, his speech delays, etc." We were both noticing some things that pointed to Autism. I then made an appointment with a psychologist to have him evaluated.

Right before Jax's 4th birthday, he was evaluated for Autism. We filled out what seemed like a million papers and did lots of testing over the course of a week or two. The psychologist was having a hard time making the diagnosis because Jax wasn't showing a lot of the symptoms kids with Autism usually have. It is now very obvious he is Autistic as he has acquired much more symptoms than he had when he was younger. After much testing, the psychologist said to me, "I do believe he is on the Autism Spectrum." Even though I knew in my heart this would be the outcome, my heart sank.

I remember instantly feeling such heartbreak and sadness for my son. What would his future be like? Would he have friends? Would he be able to ever live on his own? Would he be bullied?  
Would he be happy?

While I thought I was doing a pretty good job of hiding my feelings, the psychologist could see the hurt in my eyes. She said, "Hey, this is not a death sentence. All you need to do is love your son and he will be okay. If you are worried and sad all of the time, he will pick up on that and he won't progress." She was right. I needed to buck up and just deal with it. It wasn't that easy though. I wished it was. 

I had a really tough time with the news in the beginning. I cried. I cried a lotI cried for my son. My heart ached for him, knowing the trials and pain he would have to face in his life. That about killed me. I cried for myself. I felt so alone, so sad, so angry. It just wasn't fair. I cried for my husband. I wondered how he felt when he saw other dads playing sports with their sons and having conversations with them. It must hurt sometimes. 

It was a really rough time in our house for quite a while. 

Once I got over the initial shock and sadness, I began to act. I started researching, asking questions, making friends with people who were going through the same thing. All of that helped, and still does. I try to reach out and help others who are dealing with Autism or the possibility of it in their families. Acting instead of wallowing in self pity makes it so much easier to deal with. I still have my rough days, trust me...but I am now okay with the fact that my son has Autism. It does not define my son, but it is part of who he is. I have often thought, if I had the chance to completely take away my son's Autism, would I? It's a tough question/thought. Yes, I would love to be able to take away the hardships and frustrations my son deals with because of Autism. I would take that away in a heartbeat, if I could
But, if taking the Autism away meant taking away his adorable personality, his quirkiness, his humor, his hilarious acting abilities, his uniqueness...then no. I would never want to take that away from him. He then wouldn't be Jax. We love this boy and adore him for who he is. He's perfect. If I had to pick one of my favorite things about would be the fact that he doesn't care what other people think. He dances around and acts things out and carries on as he pleases...and it doesn't matter to him who is watching. I love it. That is something I can only hope and pray my kids learn and Jax has it mastered. He does what makes him happy and that's all that matters to me. 

We are so thankful that we have the chance to raise such a unique, beautiful soul. 

We are so blessed.


Welcome To Our World!! Getting a diagnosis: Part 1

I am so excited about this new blog! I will be posting lots of great information about Autism. Most importantly, I will be sharing our experiences with Autism. It will be real. It may get ugly sometimes as I will be sharing not only good experiences but the not-so-good experiences too. ;)

I'd like to first share our story of getting a diagnosis and how it all happened...

Aside from Jax's rough start as a newborn, he developed right on target (or even ahead on some things) as a baby. He was saying around 40+ words when he turned 12 months old. It wasn't until he turned two that we started noticing signs that Jax may be falling behind. It was like he stopped progressing. The lack of progress just happened to be right after he received a bunch of immunizations all at once. Yeah, tough subject, I know...but this is what we saw happen with our own eyes.

At Jax's 2 year well child checkup, I expressed my concerns to our pediatrician. He told me Jax was doing just fine and was even ahead on speech. That kind of baffled me because I was around my nephew a lot at the time (who was the same age as Jax) and he was talking so much more. I tried not to compare, since all kids are different, but the gap just seemed to be getting bigger and bigger. After the appointment, we came home and I just wasn't feeling content at all. My mommy instinct was screaming at me that something just wasn't right. I then called the pediatrician to speak with him about it all again. He told me several times that Jax was just fine and was developing perfectly well and not to worry about it. I decided I should just trust him since he should know what he is talking about. He had been a pediatrician for 40+ years, after all.

Life went on...

When Jax was about to turn 3 years old, we continued to see a bigger and bigger gap between Jax and his peers. We decided it was time to have him evaluated. We went through the school system for his evaluation. It was tough. When all was said and done, we received the results which stated that Jax had severe developmental delays, in all areas. We knew he was behind but seeing the severity of it on paper was a big slap in the face. 

How could this happen?! What did we do wrong? What could we have done differently?

I was sad. Really sad. Part of me was happy because we could finally start getting him the help he needed...but the other part of me was so sad, and angry, and hurt. It just didn't seem fair. Why did OUR little boy have to go through this? 

See next post for part 2 of getting a diagnosis of Autism..