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.

Echolalia

Ech-o-la-li-a:
1. Psychiatry The involuntary and immedate repetition of words or phrases just spoken by others, often a symptom of autism or schizophrenia.
2. An infants repetition of the sounds made by others, a normal occurance in childhood development.

Ryan's first speech was all echolalic. He repeated songs, phrases but more often, movies. He could repeat whole dialogs from movies after watching them one or two times. But he couldn't tell me about what he'd eaten for breakfast or what he had done over the weekend. It was heartbreaking. He could speak physically, there was nothing wrong with his ability TO SPEAK but he couldn't have a "normal" conversation. He couldn't express himself. He couldn't ask me for something or tell me what he wanted. He had some functional language but he was basically unable to communicate.
That was 3 years ago.
Since we began intensive Speech and Occupational Therapy, Ryan has made such huge strides in his abilities to function. He can talk fairly well, but its at a much younger age level. He speaks more like a 3-5 year old than an almost 7 year old. But that's GREAT!! I love the way he's grown and changed in the past few years. He's a very sweet and caring boy, and loves expressing those feelings. But the echolalia is still there, though not nearly as much. I notice it the most right away in the morning. I haven't figured out yet what exactly is the trigger, but I'm assuming it's his way of collecting himself for the day. Some people shower, shave and drink coffee, some people read the newspaper and eat cereal, Ryan recites movies. This is actually one of the hardest things for me to deal with Ryan. I'm not sure why. It drives me absolutely NUTS. I HATE HATE HATE it. I don't know why...
Perhaps I feel like it's a small step backwards in his language development. Perhaps its the fact that he still has to use the echolalia as a calming activity. Perhaps I'm just tired and extra cranky in the mornings. I notice that when he's worked up or agitated or he just can't find the words, he uses the echolalia. That doesn't bother me. Its the morning time that does. He is happy, rested, calm, ready to start the day. Then why does he NEED the echolalia?? I will probably never really know but its these little mysteries that make Autism so challenging.

RedHawks Game

Eric's choir from school was singing the National Anthem at the semi-pro baseball team's game last night and we decided to make a night of it. Eric met with his classmates before the game and Mike, Ryan and I went up to get our seats and eat some hot dogs. From the moment the we left the car, Ryan was a giant bundle of excitement. It was as if every cell in his body was moving in a different direction. This was cute for about two minutes, when it didn't calm down. We walked past the playground area they have set up for busy children and he talked up a storm about it (Can we play on that? LOOK LOOK LOOK MOM LOOK MOM can we play??) while he was bouncing and jumping around. I told him we could play later, and we proceeded to the concourse area. He then told me all about every booth we passed. "LOOK MOM LOOK MOM DOUGHNUTS" "hey, there's Hawkeye""Look mom, he has popcorn! Can I want some popcorn? Please mom can I want some popcorn? Mom Mom..." (you get the idea) He was utterly abuzz with excitement. We were looking over the menu and deciding on what to order, while Ryan chattered and asked for popcorn incessently until I had to bend over, hold his shoulders and say "Ryan, honey, we are getting popcorn but you NEED to calm down". He was a little quieter but still bouncing.
We got our food, then went and sat down. Ryan marveled at all the advertisements on the back wall, talked about the clouds, and since the field is close to the airport, LOVED talking about and watching the planes flying by.
And then he saw the blow-up bouncy game. Oh lord!! He would not stop talking about the "Hawkeye" themed game. It was directly behind our seats so I let him walk down to it and play while I carefully observed. He walked up to the man keeping an eye on things, and just stood. The man said, "You can go in". Ryan then took off his shoes, stood up and said, My name's Ryan". The man said "I'm Colby, man". Ryan saluted him and said in an excited voice, "Nice to meet you!" then ran into the bouncy game. I choked back tears and beamed with pride. He handled the situation well on his own, AND he was polite about it. There was a minor melt-down when it was time to leave the game, but I averted it but giving him some choices. Shoes on now or when we sit down? Walk up these stairs or those? ...hey, its the little things :)
He got his popcorn and watched the game for a little while but then wanted to play on the playground. He did amazing, and I'm very proud of him.

Talking Cereal

The way my day begins is completely up to Ryan. Some days he loves waking up, doesn't fight is teeth being brushed and is fairly quiet while eating breakfast. Other days he wakes up, fights getting dressed, tries to keep his mouth shut so I can't brush his teeth and his echolalia is out of control. These are the frustrating mornings. Nothing is right for him. I wish I knew what the problem was so that I could fix it.
Today was a good day. He was happy and telling me stories as he got dressed. He was excited about his plaid shorts and his brown "pocket shirt" (Its a t-shirt with a pocket- apparently the coolest thing ever!!). He brushed his teeth without issue. I bought a box of rice krispies the other day because I have some marshmellows and I was thinking about making treats. I don't particularly care for rice krispies (or any other tiny size cereal, too hard to eat LOL) so I'm sure I've never bought it before, at least not for eating in a bowl with milk. So, as I pour the milk, I figure Ryan may get a kick out of this "talking" cereal.
"Ryan, listen! The cereal is talking to you!!"
He looks at me with questioning eyes, then looks at the bowl, then looks back at me.
"Talking cereal, momma?"
"Yeah, can you hear it?" I motioned for him to get closer, though the popping sounds were quite clear. He put his face very close to the bowl and listened for about 10 or 15 seconds.
"Hello, cereal. How are you today?" I couldn't help but smile. Then he paused.
"Hmm, that's nice. I love you, cereal." He was actually conversing with his rice krispies!! When Eric came upstairs, Ryan called excitedly, "ERIC! This cereal is TALKING!" Eric looked at me, and I smiled a big, teary smile and shrugged. He looked back and Ryan and said "cool".
Its a good day.
:)

Small Differences

Since Ryan was my first child, and because of his special "issues", I have been marveling in the differences between him and my younger babies. Clara, 18 months, is a crazy maniac!! She gets into everything and is messy and deviant. Ryan was content to sit in his swing, or play on the floor. He never once tried to open a cupboard door or climb up the back of the couch to get something off a shelf. He wasn't curious. He didn't want to explore. His world was right in front of him, and probably a lot in his own head. I always thought he was "so easy". Clara makes me realize what other parens had always talked about with toddlers...Autism isn't always a curse ;) But there is more than that too. Clara LOVES having her teeth brushed. It is STILL a struggle with Ryan- though its much much better now. Clara LOVES taking a bath, which Ryan does too, but washing her hair is so easy...Ryan would fight it with all his might. Clara is already getting interested in potty training...Ryan was over 6 before he pooped regularly on the toilet, and he still has an accident occassionally.
Its amazing to think of these small differences in my children, and how I wouldn't change them, even if I could.

What is PDD-NOS?

Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is a condition in which some, but not all features of Autism are identified. There is impairment of social interaction, communication, and/or setreotyped behavior patterns but full features for Autism are not met. There are no specific guidelines for diagnosis provided with PDD-NOS. While deficits in peer relaions and unusual sensitivies are typically noted, social skills are less impaired than in Classic Autism. The lack of definition for this group of children presents problems for research on this condition. Children with PDD-NOS ae usually diagnosed later than children with Classic Autism and intellectual deficits are less common. Children may appear unemotional when interacting with others, have trouble holding eye contact or have trouble transitioning from one activity to the next. It is thought to be a "milder" form of Autism, though this may not be true. One symptom may be minor, while another may be worse. Because PDD-NOS is harder to define than Autism, therapy can be tricky. A "one-size-fits-all" approach usually doesn't work. Some treatments typical for a child with PDD-NOS include, but are not limited to : behavioral regimens, including play therapy, Applied Behavior Analysis (ABA), sensory integration therapy, etc, medications, including anti-depressants and Social Skills training.

On a more personal note:
Ryan's "symptoms" (I HATE that word!!) are more subtle than many children with either PDD-NOS or Autism. He has little to no physical 'stims' (stimulations) unless he is angry, sad, upset or stressed out. The 'flapping' that is a classic trait of Autism only shows its self in Ryan during periods of stress. For example, a couple weeks ago we waited for TWO hours for Ryan to get his face painted (a full-face Spider-man) and during this time, he jumped, flapped his hands and asked for dee-pressure. Deep-pressure on his shoulders and head help 'ground' him, it can be a physical treatment for an emotional stess. This kind of behavior isn't typical of Ryan.
Ryan does have difficulty transitioning, but this is something he has worked on in Occupational Therapy (OT) for 3 years now. General tranisitions are much better now, with ones occuring at home almost seamless. However, changes in routines, or sudden transitions that aren't expected result in huge meltdowns or tears. One example of this would be that typically after school, Ryan comes home, comes in the door, gives me whatever he has in his backpack and then we may read his library books, play, watch a movie or he may play on his own, depending on what we have going on that day. If I need to go to the grocery store or if we have an appointment of some kind that requires us to get in the car after school instead of coming inside, Ryan will cry, display anger by yelling, screaming, throwing things or he will lean his head against the window and ignore everyone. This usually lasts about thirty minutes, sometimes less if he realizes the place we are going is a fun place. Transitions can be hard for Ryan with things as small as the order he puts his clothes on. It is always underwear, pants, shirt and socks. There can be not deviation without a struggle.
Many children with Autism have issues with peer interaction (interaction in general, actually!!) and socialization. Ryan has this to a much smaller degree. A couple years ago, he wouldn't play with another child AT ALL. He wouldn't even acknowledge that child was there. But with intensive therapy, he's really come a long way and now truly enjoys other children. He has a wonderful time at school and about three weeks ago he told me a story about Lauren. She had a loose tooth. I asked him if she was his friend. He looked at me and said, "Yes, my best friend". I hugged him to me and cried. It may seem silly, but Ryan had never talked about having a friend. It has been almost 7 years coming. Ryan is extremely loving and caring. He admits freely that he loves someone and enjoys hugging and kissing people...sometimes even strangers :)