Thursday, December 20, 2012

Alive and Well

What happened to blogs? Is it just me or does it seem like they are going away?

Well, regardless...I will give you a quick life update on the Roses.
1) We will be moving to Michigan at the end of the school year. I am excited, but also sad as I love love love my current location.
2) Colton is an all star. Seriously. I just had a meeting with his psychologist to go over his recent evaluation. As expected, he has made progress (especially in language, cognitive, academic skills), but what wasn't expected is HOW much progress he made. As his psychologist said, "You should be very happy, these are beyond typical gains we see." So excited, and makes it all worth it. This kid can do anything and now I'm even more motivated to work on the areas we still struggle in (self help skills, socialization, difficult behaviors, repetitiveness etc.)
3) We are a happy family. It's just the 3 of us, but we are happy. We love having dance parties, family movie nights, going to soccer practice, and playing with friends. We appreciate all the little things and have so much joy on the daily basis being Colton's parents.




Monday, August 6, 2012

10 Things People Tell Autism Parents

Being a parent of a kid with Autism is a unique experience. You feel often times like you are in the same world as everyone, yet also entirely in another. Often times from the outside, things can appear normal and fine, but upon closer look you realize the inner workings are entirely different.

Here are some of the things people say to me, as a mom of a kid with Autism. On the surface, these statements seem true to them...but it's only upon closer look, that you realize the true depth to Autism and the impact it has on my every day, plan, future, and heart.

10 Things People Tell Autism Parents
1) It's okay now that your kid has Autism, because you are used to it.
  • How I really feel: I look fine. I smile. I am happy. Truly, I am. But, I am never quite used to the fact that my kid has Autism. This is something that never goes away. Not in a month, a year, or a decade. It is always there and always challenging in different ways at every stage in Colton's life. It hits me in different ways every day and still hurts to realize...he is different...he might not ever get married, or have a group of real friends, he might get bullied. I'll never fully get used to it.
2) Are you sure he has Autism? He seems fine to me.
  • How I really feel: I know you are trying to make me feel better, by telling me is doing well...and I'm glad you are looking on the positive...but please try not to negate what I am going through. He is not fine, and I have about 20 professionals and test results to remind me. My life is dedicated to helping him, and he is where he is because of 35 hours a week of therapy and nonstop effort. 
3) He can talk though (or eye contact, or insert whatever), so he must not be THAT Autistic.
  • How I really feel: I am grateful EVERY time Colton says anything, that he started talking again (after not speaking for a few months). I'm glad you think he is talking well, but again, anything to minimize what I am going through makes me feel a little dumb...and like you think I'm being over dramatic. Being able to talk some, or have some eye contact doesn't mean he is fine. Talking doesn't mean he knows how to communicate well or hold a conversation or make a real friend. 
4) If your next kid has Autism, you'll be okay though because you already know how to handle it.
  • How I really feel: Having another kid with Autism, I've heard is equally if not more devastating than the first kid's diagnosis. I KNOW how hard it is and how much work it is, and now I might have to go through it again with an entirely different kid. It'd be like saying "oh you had one child, you know how to parent the next." They are all so different. I still hold on to the hope of a normal family, having another kid with Autism shuts that little hope I have left.  I mostly just want you to validate my fear, and tell me that it would be hard...not try and comfort. 
5) I'm sure your next kid won't have Autism. The chances probably aren't high.
  • How I really feel: Do you know how many people willingly get pregnant after having a child diagnosed with Autism? Not many. The statistics are tough to swallow. If we have another boy, our chances of our next kid having Autism are around 20%. I have known families with 4 kids all with Autism...I see it all the time. 
6) I heard this diet can cure Autism.
  • How I really feel: I like the help and resources people give me, they have been very helpful. It's true that diets can help a lot of kids on the spectrum...but...there is no cure for Autism. No quick fix. I wish all it took was a diet. That is just false hope however. (personally, we don't do any diets)
7) You just need to discipline him more...or try it like this.
  • How I really feel: I doubt my abilities a lot on our really rough days. I am aware he is throwing a tantrum, or kicking sand, or not listening, or hopping too much...very aware... I have an entire team of professionals including myself doing everything in our power to help shape Colton and his behavior into the person I know he can be. Colton's mind works differently, and unfortunately, what works for most kids doesn't work the same way for Colton. If it did, he wouldn't have Autism and we wouldn't need therapy. 
8) What super abilities does Colton have?
  • How I really feel: Only a small percentage of kids with Autism have those super super genius abilities. Colton doesn't have anything yet that stands out as to where he will excel or what he will be really interested in. All I can hope for is to find something he IS good at, give him confidence, and hope he can turn it into something he can be successful in. 
9) Can't you test for Autism when you are pregnant?
  • (I got this one last week) You cannot test for Autism when you are pregnant. Autism isn't diagnosed through a blood sample or brain scan, it is diagnosed through observation. They know Autism is mostly genetic, but they don't yet really know what that means. 
10) How can I help?
  • Justify my feelings. Acknowledge the difficulty, and rejoice with me in the successes. Notice Colton. Don't talk about him like he's a science experiment. Talk to him, get down on his level and try to get to know him. Tell me he is handsome. Don't question the decisions I make for him, just support me. Allow me to vent and be angry, some days I need that. Allow me to be positive and optimistic, I have high hopes for Colton. Basically just love us :) 

Friday, July 20, 2012

Good finds

Here are a few of my good finds in the last few weeks.

THIS little clock has been a lifesaver. You know how kids don't know what time it is, or what time they should get out of bed? Well, Colton had started waking up waaaaay too early and saying things like "is it morning yet?" I decided to get this clock, so he would KNOW when it was okay to get out of bed. The light switches from the nighttime scene to the day scene at a specified time. Since Colton is quite literal, he follows it and will wait until that little sheep switches over to the day time to get out of bed.

The ONE minute hair. How did I not discover this earlier? I shower at night, don't even blow dry my hair. The next morning it is kinda ugly wavy. I curl maybe 5-7 pieces for one minute and it kinda looks cute wavy. EASY. (don't mind the creepy face)

This pillow from West Elm. I think I have to get one. I love it.

Sunday, July 1, 2012

Getting to know Colton

So you guys read about Colton all the time...but not many of you get to meet him. Here is a couple minute video showing Colton's cute personality.

Love this kid. Enjoy!


Sunday, May 27, 2012

Summer!

It finally feels like summer has arrived....and it's been long overdue. We kinda missed last summer altogether, so I fully plan on taking advantage this year. For the first time in almost 2 years...we went to the pool! It was a success! The current state of our tans however, NOT a success. :)

I also invested $30 in this bad boy. Anyone want to come out to Columbus to visit us now?
Here's to a summer of movies, bbqs, sprinklers, pools, and friends...all squeezed around 35 hours of therapy a week of course :) It's okay, that just means less tv time.



Happy summer! (any favorite activities for summer? I'm on the lookout for ideas.)

Wednesday, April 25, 2012

Big Boy Bed

It was time. Colton is now 3 years old and 2 months. Definitely time for a Big Boy Bed. We waited long enough for the switch, so I figured I might as well go big and just put him in a full blown twin.

I have this constant issue...I want a new piece of furniture, I want it to be quality, quality costs a lot of money, we are poor grad students and don't have money. So....what do I do? I make it. And make I did. (the headboard plans are from ana-white.com and the frame I made up). Solid wood. Headboard $20, bed base $60. Total $85. Customized perfectly for what I want. Sounds good to me :)

The transition for Colton went perfectly. All I needed was to make him a transition book/social story to prep him. Colton loved the bed, and had no troubles with the switch. I am so proud of him! And he looks so irresistibly cute and little in that big boy bed :)




 (I need a cute painted rocking chair in that left corner. Yellow or green?)

and a few close ups...


 and a few shots while building...


 And here is the cute boy IN the bed :) I love him.


Monday, April 2, 2012

Autism Awareness: Our Story

April is Autism Awareness month. So, I want to do my part in helping others become more familiar with Autism. Just as everyone is unique and different, so are those with Autism. There is a saying in the Autism world, "You meet one person with Autism...you meet one person with Autism."

My views a year ago on Autism were drastically different than what they are now. I thought Autism meant someone who didn't make eye contact, wasn't very loving, and was cold. Not true.

I've already done posts about Colton's therapy (Colton's Therapy Part 1, Colton's Therapy Part 2, Colton's Therapy Part 3), so now I'm going to tell you about Colton's Autism Story: things I noticed, things that were different, and how I came to the realization that Colton had Autism.

Here is Colton's story:

Colton was born a healthy, strong, full term baby. He was a tricky baby, as most babies are. He liked to be held, but wasn't necessarily fussy. He liked to be held facing out, and not snuggled in...and REFUSED to nurse. It was impossible. As the months went on, Colton hit his developmental milestones and smiled and laughed and babbled. Colton was more demanding than the average child however. No one else could hold him besides me and Mike, and I mean no one. He got easily overwhelmed and was known to cry anytime someone would come up to him and say, "Hi Colton!" and make eye contact. I used to dread when the shopping clerk would try to talk to him, it would always make him cry.

But, Colton was comfortable with us, family and his close friends.

He is just really shy and sensitive I would say to others. And this was true. A very typical behavior for kids, nothing to be alarmed of.
As Colton grew older to 6 months and on, he continued to develop and hit his milestones, except in movement. I could NOT get Colton to roll over, scoot, attempt to crawl, attempt to sit up from laying down. Nothing. I tried everything. "Oh, how lucky that he isn't 'moving yet." "Oh, it's fine...mine moved late too" people would tell me. As he approached his first birthday and STILL couldn't do these things, I felt unsettled and put him in physical therapy for 2 months. I remember being so nervous that first appointment and asking them, "so, is anything wrong with him...like in his brain or anything?" I was terrified of those families there week after week after week with no end to therapy in sight. "Oh, no, nothing is wrong...he is just a locked up baby." I was so relived.

Just a cautious, late mover I thought.

(at this stage (above) Colton was not crawling yet)

Colton quickly picked up crawling and then was walking by 15 months. He started talking like crazy and was very advanced by 18 months putting 2-3 words together and learning 15 new words a day. He still was overly cautious with his movements and had issues on wobbly playground bridges or walking down ramps/stairs, however. Developmentally, he seemed right on track.

At his 18 month appointment, Colton hit all the developmental milestones with talking, eye contact, saying names etc. Although he was a pleasant kid, and well mannered, he still was more demanding than the average 18 month old. He would never go off and play on his own, had clung onto me in crowds and in new situations and had personal space issues when others got too close to him. He didn't do the same things other kids would do sometimes...he never really got into any trouble, or went through cupboards, or dumped out buckets. He could sit and read with me for an hour straight, which wasn't typical for an 18 month old. Still, nothing was alarming, and in fact, most people told me how lucky I was that Colton wasn't so mischievous. Colton's just a really smart kid and is interested in different things...I would think.

At Colton's 2 year old appointment, he still hit most of his milestones except for self-help (spoon, fork). I remember asking my doctor, "so, we are out of the water for Autism right?" --Autism was always the one thing I didn't think I could handle.

Around age 2 is when I started noticing more. Most kids caught up to Colton verbally. That was fine since Colton was so advanced early on, but the way in which he communicated was different. He would repeat what I would say, memorize books and songs, but not uniquely come up with phrases. Everything was repeated. He would say things, but not necessarily to gain attention or to make needs and wants known. I remember distinctly being with another 2 year old and watching him hold his hand out to me, look at me with a funny facial expression and say, "I have an owie." I remember thinking to myself, "Colton doesn't say things to me like that. He doesn't show things to me like that."

Colton's friends that were 2 started to gain an independence and wanted to do everything "by themselves." This never kicked in for Colton. I must just baby him too much...I thought. He wasn't even close to using a spoon or fork or drinking from a cup. I tried and tried, but he would just say "mommy do it." He never even attempted to take off his shoes or pull off his socks. Oh, how nice that you don't have to battle with Colton. Mine wants to do everything by himself...people would say.

At group events and others houses, I would watch all the other kids running and playing together and Colton would sit right there on my lap. Never did he initiate leaving me and going over to join in the fun. It'll kick in later, he's just still young...I would think.

At the playground kids would run up stairs, slide down slides, interact while their moms would all sit and chat. My friends would tease me since I would be personally helping and coercing Colton to go up stairs, walk across a bridge, or maybe even go down a slide. He would NEVER swing.

Colton played fine with toys, but mostly with my help. I was with him playing with him every second of the day. He is just a first child, and likes my attention...I thought. He liked trains and legos, but his fine motor skills didn't seem to be able to allow him to build and play like other kids. He never would hold a crayon, and when I'd try to put his fingers around it...he'd hold his hand straight out not allowing me too. Transitions were near impossible, with lots and lots of tantrums. Oh, I hate the terrible 2s...I thought. He became quite rigid with his routines and would get upset when we'd vary from them, and he just wanted to play with the same toys in the same way every time. He began, what I thought was imaginary play. He would hold his Buzz Lightyear and run back and forth and back and forth and jump and jump and jump. I remember one time laying outside on a blanket with the beautiful breeze outside, while Colton ran back and forth and back and forth in the backyard. "Life is just so easy, I told myself. Colton can entertain himself now...I have officially arrived in life."

Here is where things got bad fast.

(Let me clarify, Colton DID experience a regression...HOWEVER, I do believe he has always had Autism, not that it happened to him later. Everything that was a problem became magnified. He just must've developmentally been going through something and/or Heavenly Father was making me aware of Colton's problems.)
Colton kept what I thought was imagining, and he slipped further and further into his own world. He would constantly hop and run back and forth and back and forth. I tried to pull him out of it and gain his attention, but he became very unresponsive. He started whining more and stopped using his words as much. At dinner time, I would look over at him and he'd be smiling to himself...but not at anything really in particular. When we'd play with friends he would go to the opposite end of the playground, and I couldn't get him to engage anymore with peers.

Although it sounds obvious that there was a problem, there were moments where he still seemed the same. I became concerned April of last year. For 2 weeks, it's all I thought about. I researched and researched and researched and analyzed Colton's every move. Everyone told me not to worry because Colton seemed normal to them, said my name, could talk etc. I remember coming into bed one night and Mike was upset that I had suggested Autism. The next day was Mother's Day. I pretty much just stared at the wall that day, totally out of it. My mom called me to tell me Happy Mother's Day and I remember saying, "I'm concerned about Colton." She usually comforts me and tells me everything is fine, but this time was different....she listened quietly. She could tell that something was wrong too.

I told Mike that first thing in the morning, we were going to the doctor. I had this pit in my stomach, I felt very disconnected from the world and all consumed with Colton. The next morning at 4 am, I heard a thump thump thump thump. thump thump thump thump. thump thump thump. "What IS that?" I thought....and then my heart dropped. It was Colton. Hopping in his crib. Not making a sound. Just hopping. At 4 am in the morning. That was definitely not normal. There was definitely something wrong with Colton. At that moment, I knew without a doubt there was a problem.

We took him into the doctor that morning. I went through my list I had written of all of the things that were concerning me. Instead of telling me everything was fine, she sat there quietly listening, intently analyzing and looking at Colton. At the end of my story, she said, "I want to have him evaluated. He need an intensive evaluation, and I recommend CA, they have a good behavior center there. Also, let's get him an EEG to make sure he isn't having seizures." She, too, had validated my concerns...there was indeed something wrong with Colton.

Mike and I walked out with Colton, I stood there staring at Mike. Mike gave me a big hug and tried to reassure me and said "Everything will be fine. He's going to be fine," he said. "No, he's not. He's not normal...something's wrong with him. He's not okay," I said back and just started sobbing. I called my mom and sister, "Something's wrong with Colton," I said. My mom booked a flight that day to come out.

The next week was full of ER trips (to make sure it didn't have a brain injury), MRIs, hearing (to make sure it wasn't hearing related) tests, Occupational visits, blood tests (to make sure it wasn't diabetes). I was in denial and wanted it to be anything but Autism. SOMETHING fixable, something with a surgery, or a pill, or a treatment. Anything but Autism. But, it was clear it WAS Autism. We got a diagnosis from a neurologist.

The next few weeks were hard. He stopped using my name and stopped talking altogether. He wouldn't really look at me and would look past me. He stopped calling for me in the morning and instead would just hop in his crib when he would wake up in the morning. I would wake up in the middle of the night not being able to breathe. I would think, "oh it was just a nightmare" but when I woke up...I was still living IN my nightmare. I would lay beside Colton's crib and just cry. The life I thought for him, the future I had projected for him. It'd all be different.

Then coming weeks brought peace, and miracles, and hope, and clarity of thought. We quickly knew the best course of action to take for Colton, moved across the country to Ohio, and started our new path. We have been guided, undoubtedly, by the Spirit, and have been given strength.

Colton now is in therapy (Speech, Occupational, and the bulk of it behavioral) 30 plus hours a week. He is an entirely different child, and progressing dramatically. He is the joy of our lives, and is such a trooper. I sincerely believe he has every opportunity in this life, and that we can help him accomplish any goal he has. There is hope. There is potential. There is happiness.

----
Here is a little info on Autism. The BEST thing for these kids is EARLY diagnosis and early intervention.
Autism now affects 1 in 88 children

Autism spectrum disorders (ASD) are characterized by social-interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors. http://www.autismspeaks.org/what-autism/symptoms

Autism Signs

Social skills

  • Fails to respond to his or her name
  • Has poor eye contact
  • Appears not to hear you at times
  • Resists cuddling and holding
  • Appears unaware of others' feelings
  • Seems to prefer playing alone — retreats into his or her "own world"

Language

  • Starts talking later than age 2, and has other developmental delays by 30 months
  • Loses previously acquired ability to say words or sentences
  • Doesn't make eye contact when making requests
  • Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
  • Can't start a conversation or keep one going
  • May repeat words or phrases verbatim, but doesn't understand how to use them

Behavior

  • Performs repetitive movements, such as rocking, spinning or hand-flapping
  • Develops specific routines or rituals
  • Becomes disturbed at the slightest change in routines or rituals
  • Moves constantly
  • May be fascinated by parts of an object, such as the spinning wheels of a toy car
  • May be unusually sensitive to light, sound and touch and yet oblivious to pain