Self-Awareness

Ryan spent the weekend with his dad, Casey. He and I were talking today about a few things regarding Ryan, and he said "Oh, there was a story I forgot to tell you. We were on our way to my parent's house and Ryan asked me out of nowhere, 'Dad, what's Autism?'". I asked Casey how he responded and he replied "Well, buddy, it's when a person learns differently than other people" and Ryan said "I have Autism, right, Dad?" Casey said "Yes you do, buddy", to which Ryan said "Oh, okay".

I can't tell this story without crying. He is growing up. He is becoming AWARE. To some, this isn't a big deal, but to a child on the spectrum...it's what can set him/her apart from other children. To my son, he hasn't always noticed what is going on around him. He doesn't look out the window and wonder what people are up to, or where they are going. He sits and tells his Lego Woody doll all the lines from Toy Story 3. So to have a moment where he seems so CONNECTED...its priceless. But then again, it scares me to my core.

Knowing that he has Autism, does that mean he knows he's different? Do the other kids in his class notice? Do they tease him? Does he KNOW that they are teasing him? Do they take advantage of him? All these fears are swirling in my head. I want to protect him. I want to sheild him from this horrible world. I want him to know, to his core, that he is the most special, beautiful amazing person ever to grace this world. I want him to know that he is MORE than Autism; he is Ryan.

But more than any of that, I want the world to know...to know that he IS amazing, beautiful, perfect in all the ways that it is flawed. He doesn't hate, or hurt, or look down upon you. He hugs you and loves you and wants your love back. Please, World...Please don't hurt my baby. He doesn't deserve it.

Clara VS Ryan

SO...
apparently sibling rivalry begins early. Clara is 21 months old and has figured out that certain things and behaviors irritate the heck out of her brother Ryan. I know this happens in every household with more than one child, and its perfectly normal. However, Ryan doesn't understand.


(this was a post I began a long time ago...so much has changed, yet so much remains the same.)

Summer

Many people believe that summer vacation is a time of fun and joy for their kids. Not mine.
Not that Ryan doesn't enjoy summer, he loves being outside and playing. What doesn't seem to agree with Ryan is the lack of schedule. He is overly moody, he's lost interest in doing certain things, he's not eating as well...I completely attribute this to not having the regimented schedule of school. During the school year, its up at 6:45, eat breakfast, get on the bus, go to school, get back on the bus, come home, go to therapy, play, watch a little TV or do other activity, eat supper, take a bath, go to bed. EVERY day. He thrives on this type of schedule. The school told me this year he didn't need to attend the summer school program because he was functioning so well in his classroom. But based on this year's reaction to lack of schedule, I'm going to request that he attend the summer program next year.

Goggles

So for a kid with sensory issues, Ryan has really taken to wearing goggles. He wants to spend hours in the tub, looking underwater with his goggles. I hear him talking to himself, reciting Finding Nemo, or searching for sharks. It melts my heart to hear him 'pretend', a concept that is hard for many kids with Autism. Its literally taken Ryan 7 years to learn to play pretend. So thanks to Grandpa for buying the goggles that helped lead Ryan down a path of growth :)

Baseball

Ryan is playing baseball this summer! He joined a 'special needs' baseball team called the FM Challengers. The first day went okay...he was excited but unsure of what to do. There were a lot of kids running around and the volunteers weren't to sure of themselves either! He got a red t-shirt that had been left over from last year. He hit the ball from a pitch and got to play first base! They have snacks and lemonade afterward. The second day was not as good. They passed out this years t-shirt, which is black. Ryan didn't want to wear the black shirt, he wanted the red one. OKAY. Pick your battles, right? They were doing pictures that day for his 'baseball card' and so halfway through the game, I was trying to convince Ryan to change into his black shirt for the picture. He finally wore it over his red one, and took it off right after the photo (which turned out really cute, btw!!). The next couple weeks went great. He is hitting amazingly, playing first base, running all over the field to get the balls. There is one young man volunteer who has been helping Ryan and who Ryan seems to really enjoy. They play catch together. Its really fun to watch. Two weeks ago Ryan got his baseball cap. He's hardly taken it off since! I wasn't sure that he would like the hat, he normally doesn't. He looks like such a BASEBALL PLAYER wearing his hat, it brings tears to my eyes. Ryan has been doing so well and improving, that I'm considering possibly enrolling him in a neurotypical baseball league next year.

Valley Fair

Ryan has been to Valley Fair (a Six Flags type amusement park in Minneapolis, MN) with his father three two or three times. This past weekend was the first time he and I have been able to go together. I know he enjoys carnival rides and roller coasters but I didn't know it was to the level it was!! He was very excited to get there and actually had a lot of patience, which impressed me. It was a grey, dreary day but that turned out to be a blessing- not many people are willing to brave the rain :) We had my friend's 3 year old with us and he and Ryan spent the first part of the day going on the smaller rides. Finally, it was time to ride the big rides. This was my first time at this park, and it had been many, many years since I've riden these types of rides, so I was almost as excited as Ryan! We decided on "Wild Thing" as our first coaster. As the name suggests, it was one wild ride!! It was a "thrill" coaster- Ryan grabbed my arm and smiled the entire ride. Seeing the pure joy on his face was priceless. We rode many rides that day and it was by far one of the most fun days I've had with Ryan. The next day we went to the Mall of American and ate at the Rainforest Cafe. I'd really wanted to eat there and I thought Ryan would get a kick out of it. For those who don't know, it looks like a rainforest inside, it "rains" and smokes and there are monkeys, butterflies, frogs and other simulated wildlife there as well. Its really a cool place! Ryan LOVED it. It would 'thunder' and 'lightning' and then the rain would fall and the smoke would rise. After lunch, we went to LegoLand. Again, Ryan was well behaved and happy. THEN he saw Nickelodeon Land (or whatever the real name is) and he wanted to ride the roller coaster. Mike and I decided we wanted to ride one too. So we bought one ticket each and we walked to the biggest, twistiest one we could find. Suddenly, Ryan wouldn't take another step. He kept repeating "I don't wanna go on there" and "lets try that one", pointing to a smaller roller coaster. I kept asking what was wrong, why don't you want to go on this one. I was so shocked because after Valley Fair, I didn't think he'd have any problems with anything and this one was quite a bit smaller! It took over 5 minutes of talking and then Mike and I gradually walking in before we finally figured out what was wrong. He thought he was going to hit his head on the ceiling. The coaster starts out with a completely vertical climb to a nearly vertical fall, and the top looks like its close to the ceiling (obviously its not). Ryan felt like since this tall coaster was inside, we must hit our heads on the ceiling going over the top. I kind of laughed in relief to finally figure out what was bothering him, and calmly explained that he would NOT hit his head. He bounded up the stairs and had a great time on the ride.
Then it was time to leave. My parents were at home waiting on us and we had a 4 hour drive in front of us. Ryan cried, screamed and pulled on my arm for the next hour and a half. He wanted to ride more roller coasters and he wouldn't listen to me as to why we couldn't. He threw himself on a bench at the Mall and cried. People were looking at us, but how do you explain? "My son doesn't understand why we can't keep riding the roller coaster"... Once we got on the Interstate, he fell asleep. We drove for about 45 minutes before stopping for gas. He woke up, immediately started crying and whining about the roller coaster. What on earth!! So I bought him some gummy worms and again explained that Grammy and Grandpa were waiting for us. He finally calmed down. That was one of the best trips ever, but it reminded me again that we still have to be very careful about what we do with Ryan. In this situation, riding NO roller coasters would have been better than riding ONE. *note to self*

Haircuts

Ryan recieved his first haircut at a typical age (around a year??) and it was uneventful, as where the next couple. Then Ryan turned 2. Haircuts became a source of anxiety, fear, and stress. I couldn't take Ryan to get a haircut without help, because it took two of us to hold him down, restrain his arms and legs and hold his head straight. There is a salon that caters to children here in Fargo called Lil Whipper Snippers. This place has chairs designed for kids, little tv's that play movies or video games, bubbles that blow from the ceiling, fun designs on the walls, toys etc...everything that should put a child at ease and entertain them during a 5-10 minute haircut. Not Ryan. His dad or step-dad had to hold him on their lap, legs wrapped around his, and holding his arms crossed around his body. Then I had to hold his head so the (wonderful, patient, amazing) stylist could attempt to cut his hair. He would SCREAM, cry, thrash, kick, and bite. We all would be covered in hair, his sticking to his face and neck because he was so sweaty from fighting it. His eyes and cheeks would be red for a day or two because he would burst blood vessels. I would tip her $10 and leave ashamed, embarrassed and devestated for Ryan, that such a small thing (in my mind) could be so incredibly awful and traumatic for him. They would try to reassure me that he wasn't the only kid that had these issues, but I couldn't believe that. I thought he was the worst they'd ever seen and they were trying to be polite. After 3 years of this, I gave up. I gave up on the thought he would ever get used to it, I gave up the thought of him having a cute and stylish hairstyle, I gave up a little bit on him.
Then we started cutting his hair during Occupational Therapy. He was able to hold the shaver, and cut his own hair, with me finishing up the uneven parts. He made such huge gains when he had control over the situation. He still hated the hair falling on his face, arms, back, neck and chest but he was learning to tolerate it. He also started to realize that it was a lot better when he sat still. So we continued this way for over a year.
A couple months ago, I thought it might be time to try the salon again, since he'd been doing so well at home. I asked him first, if he thought he'd like to go there and sit in the chair and have someone cut his hair. He said yes, and was very excited about it. I made the appointment with high hopes! When we arrived, Ryan was very happy and excited, while I was nervous and hopeful. Overall, it went fairly well. He still had some issues but he was able to sit alone and receive a decent haircut!! I was very proud of him. Then last week we went to the salon again for his summer haircut. I was completely blown-away by Ryan during this haircut. He sat and played the Shrek video game throughout the whole cut. He politely told Bridget that he didn't want her to spray his hair with water, and so they compromised with her spraying her hand and wiping in his hair instead. This was fine with him. By the end, he had a spikey hair-do with blue paint gel on the tips!!! HOLY COW...
All things in time.