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.

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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

13 comments:

Andrea said...

I can't explain the love and appreciation I have for you guys after following the past year (plus). I don't understand WHY the autism, but I do understand that you two are more capeable than any other two people on this Earth. I truly do. Colton is a sweet, sweet boy, with a special spirit. What a blessing he is to ALL of us!

Brooke said...

This is a beautiful post. I am so glad you recorded it. It definitely had me crying at parts- but the end result is so hopeful and wonderful and I just love it. You are amazing and I was and still am so impressed at how in tune you are/were with Colton's needs. A less in tune parent could have missed the signs, but you were on top of it and what a blessing that you were. I was thrilled to hear Colton's little voice in the background the last time we talked on the phone. He is such a great kid and you are a phenomenal mother. I admire you so much.

Adam and Brittany said...

Thank you for sharing your story.

Jill said...
This comment has been removed by the author.
lyndsey said...

oh ang. colton is SO lucky to have you as his mom and you and mike are my heroes. xo

Jill said...

Angela, thank you for sharing the journey. So often I think of it beginning right at the time of diagnosis, because that was when the troubles suddenly became obvious. He was always so dear, sweet and bright, with his smiles, words, and cute ways, it would have been difficult for anyone to know there was a problem. We know more now. When the regression occurred last May, it was as bad or even worse than you described. I know because I was there. I will never forget our weeks of tears, and how it was for me to watch you and Mike cry, "Colton, don't you remember....?" a hundred times a day. My heart was utterly broken. But your father kept saying, "I believe we have every reason to be hopeful." And he was right! When Colton started speaking again, and coming back to us, I took joy in every step. Now, when I come to visit and enjoy my grandson's greetings, giggles, hugs, kisses, high fives, and delightful if distinctive conversation, my cup runneth over. My heart is full with gratitude to God for every single therapist, teacher, friend, and most especially Colton's extraordinary parents. I do know the road ahead is still difficult, and paved with hours upon hours of therapy and careful coordinated effort, but I do not doubt that our little boy will enjoy a fullness of life. I wish the same for every child with this diagnosis.

Sharon said...

Makes me cry all over again reading the story. Thanks for writing it all down. It may bless someone's life who doesn't realize that something is wrong with their child. Colton is an angel, we love him dearly and thank Heavenly Father every day for sending him to such wonderful parents.

Taryn said...

Angela this post was beautiful. You are such a wonderful mom and Mike is such a great dad. You guys are the perfect parents for Colton and your love for him and his love for both of you is so obvious. We are so lucky to know you guys and to learn from your awesome family!

fiona said...

Angela, this made me tear up. What a heartbreaking, and ultimately hopeful, story! He is such a darling little guy, and is really blessed to have you two as parents. And you are really blessed to have him. As you know. What strides he has made! The Lord knew what He was doing when He put you all together.

Crystal said...

Thanks for posting this story of Colton's journey. Not only are you such an amazing mom to Colton, but I know that you have helped and inspired so many other parents too. I am so glad to hear how much progress Colton has made. He is such an adorable little guy.

Laura Beth said...

What an amazing story of hope and a testament to what amazing parents you two are. I miss this little guy everyday and am so glad that he continues to be surrounded by people who provide him with the tools to live his best life. :)

Chris said...

This is such a moving story - I can't imagine the emotions and thoughts you have all been through. But the faith and the optimism you have is amazing. I still haven't met Colton!! I want to meet him!!

Anna Watson said...

Thank you so much for sharing Colton's story and raising Autism awareness this way. He is such an adorable little boy! :)