Sunday, March 25, 2012

Who really cares...

On Saturday we had a "situation" that seems to be happening more and more.  Wyatt was invited to a birthday party for someone in his class, which is great, he was very excited.  The party however, happened to be at one of Rye's favorite places to go, the local recreation center for a swimming party.  We never really know how to approach these situations because we don't really know what Rye's reaction will be.  He knows about birthday parties because he has them with family and Wyatt had a big party when he turned 5.

When Rye was in preschool he would get invited by school friends, but since entering elementary school Rye rarely gets invited to a birthday party (actually one in three years).  Yes, this is sad.  This is something that makes me hate the whole social ritual.  Rye doesn't really seem to care, or at least he doesn't speak of it, so I don't really know how he feels about it or if he is aware that he doesn't get invited.

So for yesterday's party, we decide that Scott will take Wyatt to the birthday party and I will spend the day with Rye.  We had a couple of errands we needed to run. We stopped in at Klunk's bike shop to get Wyatt's tire fixed, headed to the mall for lunch at Subway, rode the train at the mall, hit the candy store and went to the Columbia Public Library, or as Rye would call it, the "yellow beezle".  He has called it that since he was little.  Rye played on the computer and requested to find a book on foil fencing.  He then moved one of the cushion chairs to the window that overlooks the street and got comfy.

When Rye wants to remember something he always asks us to take a picture of him doing it or he uses my phone to take a picture of it. This is what today looked like through Rye's eyes.

Notice something?

There are no people other than himself.

I have a feeling Rye could give two hoots about the birthday party and all of that worry and concern is on me.  I'm the one who wants him to get invited.  I'm the one who wants him to "want" to go.  I'm the one who is constantly judging whether or not he even understands that he never gets invited and the whole reasoning behind why he doesn't get invited.  I guess I need to just let it go.

I will never stop pushing Rye to be more social.

I do however need to give him a little more credit than I do most of the time.

On the way home I asked Rye if he had a fun time today and he said "sure I did".

I then said, "me too Bubble, what a fun date we had."

Rye replied with "Gross mom!  WE did not have a DATE."

"Why?" I asked.

"A date is when two people get married and there is LOTS of kissing."

Guess he is a little more informed than I think... He just cares about what he cares about and most of the time that does NOT include birthday parties or other people.

Wednesday, March 21, 2012

Rye's friend Roy

Roy G. Biv. You remember that guy. Introduced to you by your favorite art teacher in junior high as a way to remember the colors of the rainbow spectrum. I always remember the difference between Disney World, and Disney Land by the “o” is Florida and the “a” is California. Last night in the truck, Wyatt blurts out “Never Eat Soggy Waffles”… (his way of remembering North, East, South and West). We all have those tricky little ways and acronyms to remember things. Wyatt and I kept coming up with them… Never Eat Shaggy Wool… then we went backwards, Wyatt Shade Eats Noses. And it went on. Rye didn’t chime in, I don’t think he was able to process what we were doing or talking about. But when it comes to colors, he has it down. Down to Roy G. Biv. Now whether he’s conscious of the acronym or not, he will always know the order of colors, as evidenced in the photo below as a way to organize his sharpies.

We’ve talked about Rye’s “rules” in the past and how if there’s rationale behind something, it should be done that way every time. Why would you go a different way home? It doesn’t really make sense. Why would you say “what’s up?” if you didn’t mean what is above you? Why would you break routine?

I can’t crawl into Rye’s brain and explain it, but my best guess is that there’s a lot of missing connectors in Rye’s world and routine, order and rules are a great relief to him. Just like last night when Wyatt and I were coming up with different acronyms for directions, Rye was probably saying to himself, “if Never Eat Soggy Waffles” is what you learned in school, why on earth would you need to come up with more?” I would guess that rules and routine help him automate tasks when so much of life is trial and error. I think he spends a lot of time trying to put the pieces together and WORRYING about how things connect, and why people connect things one way one time and another way the next. And I’m sure it becomes overwhelming. And exhausting.

Our best success with Rye has always been, “first we’re going to eat, then we’re going to put our shoes on, then we’re going outside to play.” Prediction and establishing an order of events has always helped him transition and go with the flow better. There are so many colors that I’m sure Rye is VERY thankful for his friend Roy G. Biv. We’re ALL very thankful that Roy is available to organize Rye’s colors and relieve a little of that chaos.

Saturday, March 17, 2012

I've got a BAD feeling about this...

Yesterday my sister-in-law Susan said to me, "I think I need to watch more movies so I can understand what Rye is saying."  I had to laugh because I totally agree. Wyatt and my niece, Kylee understand what he is saying more than we do because they have seen the movies he is scripting from.  I thought it would be interesting to think about the top 5 things that I hear him say in pressure situations.  The results were pretty amazing.

I think that when Rye is feeling pressure or stress he goes to the language that is familiar.  The language that he understands because it comes with a visual understanding.  Most people who hear Rye scripting in the neighborhood or in the line at the grocery store probably have absolutely no idea what the heck he is talking about. If you take the time to really look at what he is saying it is pretty amazing to see how he is able to apply language from movies to the appropriate context in his everyday life.  

Sunday, March 11, 2012

Empowering Your Children.

There are many ways to approach parenting. Growing up I had friends whose parents would literally whip them with a belt for discipline. I had friends who would cuss out their parents and walk all over them. And most of my friends fell somewhere in between. Tara and I do not claim to be any sort of experts on parenting and have a long list of entries in the "parent fail" column. But having a child on the spectrum has made us very conscious of every discipline strategy, every measure of behavior, every intervention when things are going south, or going well. And we're well aware of our mistakes!

The friends that I had who were physically disciplined were among the most "well behaved" kids i knew, who rarely got in trouble. Were never arrested. Were never suspended from school. Were never pregnant and 16, Never did drugs… and so on. That's not surprising, they were completely scared. Their parents achieved what they wanted, well-behaved children. But at what cost? Who knows, and I'm not here to presume or judge. This is what i know to be facts with the children Tara and i have. We choose our battles. Empowering your kids to make their own choices instills confidence and trust. For example, I ask my kids what they want for breakfast. Unless they say a bowl of sugar, it really doesn't matter if they choose fruit loops or applesauce. We can always throw in something healthy to balance their choice and they've still made the choice (and will most likely eat it all anyway).

"What do you guys want to do today?" "Go to Colorado skiing." Ok, then we have a situation if we're not going to Colorado. So we have to say, "no, we need to think about other choices." But what we've learned, with both of our kids, but especially Rye, is to give them choices, but very specific choices. Instead of "what do you want for lunch?" we say, "do you want a ham sandwich or a hot dog?" The former is too abstract for Rye and so generally his answer will be "I don't know." To Rye, "basketball" is an option for lunch but he knows there something about it that that doesn't sound right. "This" or "that" narrows his focus, are two very understandable choices that empower him to decide, and are within our parameters. This is our life.

"Do you want to do your Math homework or practice your spelling words?"

"Do you want to watch Star Wars or Cars 2?"

"Do you want to go to the store with me, yes or no?"

We can't completely gauge the future success of our children's lives or happiness, but we can gauge it now and we're pretty satisfied with where we are. We mention the "formula" a lot. These strategies are also part of it. Is there bad behavior? Yes. Is there non-compliance? Absolutely. Are there still crying fits and melt-downs? Of course. But that's all part of it. I love the bumper sticker "well behaved women rarely make history." Not that i want bad children, but I'm also not crazy about the idea of my kids being afraid to speak, have an opinion or make a decision either. "Spirited with the best intentions," is where i'd like them to land!

10 things I wish I knew before I figured them out the hard way...

I'm feeling inspired today after reading this wonderful article on Huffington Post Women.  I read a lot of blogs and articles and many that identify "Top 10" things to do, etc. I'm going to start a series of blogs that feature my "Top 10" ideas or thoughts about various topics.

First up.

10 things I wish I knew about autism before I figured them out the hard way.
  1. The first time Rye does something is how he thinks it is going to be every time we do that activity again. I realized this while I was attending a workshop by Aaron Likens. Aaron has autism and he is an amazing speaker. He talked about how doing something a second time is really difficult for him at times if it is not EXACTLY like it was the first time including order of events, where he ate lunch, what he ate for lunch, etc. In retrospect I totally agree that this is true for Rye. I can think of numerous activities that we tried, things went great so we wanted to try them again. The second attempt ended in a meltdown and a need to leave early due to behavior.   
  2. Denial doesn't teach anybody anything. If you are worried that it "could be" something, it probably is. Trust your gut. I knew early that Rye would be present one minute and then appear to be in his own world the next, I just didn't know what it was that made him appear to "leave us" for periods of time. When he was a toddler and I would feel my "gut" kicking in, I would lean into him when he was sleeping and say. Stay with me don't go away... stay with me, Mommy loves you. Trust your gut and your perceptions of your child's behavior, they are probably right. 
  3. Rye does not know how others feel in most social situations. He does not employ theory of mind. I blogged about this several months ago. Sometimes I am easily angered by Rye's lack of compassion toward others. I have to constantly remind myself that he struggles with understanding how other people feel because he really doesn't know how to look at things from someone else's perspective. 
  4. If he knows about it in advance, he can handle it. If he doesn't it is really hard for him to handle a change that has not been predicted in advance for him. 
  5. Sensory sensitivities DO exist and they matter. I love this clip from the movie about Temple Grandin that was produced by HBO. Claire Danes who plays the fabulous Temple Grandin in the movie talks about how sensory sensitivities feel for her. 
  6. I do not have to be an expert about ANYTHING and the best thing I can do when I don't know is to admit that I don't and find somebody who does. Investigate all the services in your area. We really feel like it is helpful to hear the perspective and suggestions of as many professionals as possible. We receive services from multiple agencies, don't feel like you have to choose one agency and receive all of your services from one place. Your only real obligation is to your child. 
  7. Thick skin is required. There is always going to be judgement. With advocacy comes skepticism, but education is the biggest component of change. There will always be people who interpret your mission differently than you do. Ignore this. It doesn't matter. Let judgement be the concern of others, not your own. 
  8. Anxiety, Anxiety, Anxiety. Most of the time it is the freaking anxiety that gets him. 
  9. Baby steps matter too. Set realistic goals and the bigger ones will happen. 
  10. Find an outlet and a way to vent your frustrations, receive support and turn your journey into something positive for everybody. My outlet is writing on Autism Pirate, finding support from a fabulous Mom's group called Mothers of Children with Autism, and giving back to the autism community by raising funds for Ella's Hope for Autism

Wednesday, March 7, 2012

A Long Way to Go and a Short Time to Get There

We just had our boys’ Parent/Teacher Conferences. We’re so relieved to report that both are doing fantastic. Wyatt is in Kindergarten doing First Grade math and everything else is right on target if not a little above where he needs to be.


When we go in for Rye’s P/T Conference, we’re met with a title one reading instructor, a special education teacher, an aide, his speech therapist and case manager and his teacher. All of them report that he’s doing great. All of them report advances in his skills academically, socially and emotionally. They even say he’s more confident and is eager to share ideas and announcements with the class. This is a 180 degree turn from this time last year, where we all sat in the conference sort of bewildered and desperately grasping for something positive to say, something good to report… something to build on.

It was this time last year however, we realized we had to dig in, regroup and get going!

He’s gone from a ¾ to a 13 reading skill level in five months. He’s gone from simple site words to words with complex sounds and spellings. His writing is much improved and his math, is… well, getting there. He excels in geometry and is grasping money and its value. All are great things and great reports for what is expected of him.

We’ve often seen these little “spurts” and know that there will be bumps in the road. The question is, how big of a bump and how much will it throw us off our course. Part of the answer is to stop thinking about what’s ahead and concentrate on pouring as much information into his brain while we have this “window of opportunity.” Everyone is vested in him and works hard to give him as much information as possible in what may be a short time before the next bump, so that after that derailment and lost time, we can be in a fairly good place coming out of it.

For parents like us who are in that desperation mode, it WILL improve, you WILL see progress and positive growth in major spurts like many people do with their typically developing kids.

But for us, it meant digging in with new strategies, a new evaluation at the Thompson Center, reevaluating our method of motivation, and upping our game.

We could no longer be lazy/tired parents (when we really are).

We couldn’t afford not to listen to Dr. Severtson and her guidance and recommendations.

We couldn’t pretend he was doing okay when he wasn’t.

Intervention, strategy, plans and hard work are the only things that are going to get you to a place like we are today. It’s a hell of a lot of work, effort and strength, but when you have a successful Parent/Teacher conference where everyone is SO excited to talk about him and his growth and enthusiasm, it’s worth every hour of table time, therapy session, extra teaching opportunity and fit over engagement. So, for now, we’re feeling really great about our direction, our strategies, our progress, our support, our formula… and it’s such a welcome place to be.

Monday, March 5, 2012

Moments of clarity

Friday morning Scott woke up to Rye poking him in the head telling him to "wake up"! He said he was going to make breakfast for all of us.

I slept through this whole exchange and woke up several minutes later and heard banging in the kitchen. Scott was back asleep.

I yell downstairs to see what the heck is going on.
Rye yells up, "I waked up and my spidey sense was tingling... it told me to make it look like the map that the kids drew."
 I am confused and half asleep.
"What Rye?"
"I'm making breakfast Mom and I figured it out."
"Figured what out?"
"Silly rabbit tricks are for kids."
"Mom the cereal is not for the rabbit, silly."

I walk down to the kitchen and I find that Rye has in fact made breakfast for the entire family.

Rye is happy and is so proud of what he has done.  He then chimes in with typical Rye scripting of, "I hope the sand man doesn't ruin our breakfast."  I say "what?" and Wyatt translates that "it is from Spiderman."

We finish up breakfast and begin the typical rush of getting dressed, brushing teeth, and (if there is time), brushing hair.  Rye puts on his coat and says to me, "Mom, I feel lost from my dreams. That is what is bothering me. My little bug Rye takes everything in my eye and I can't remember."  

All of this seems silly and does not make a lot of sense for people who don't know Rye but I really think he was trying to tell me that he sees things in his mind's eye and he can't really  figure it out, but he is trying his best to make sense of it all.  As parents of children on the spectrum we have to take these moments to interpret what our child is really trying to say.  Even though it doesn't make sense to everybody it makes sense to us because we know our child more than anybody else.  Silly little sayings that "typical" children say on an everyday basis can mean the world to us because even though they are non-nonsensical we know what they mean because they our ours, we get them, we know where they are coming from even though the language doesn't make sense to everybody.  The "moments of clarity" that only our family understands.   

 I live for the moments when Rye is mindful enough to wake us up to make breakfast (on a school day) and it is as if he enters our world for a moment.  The amazing thing is that I feel like he is tapping into my world more and more and I am so excited for all he is learning to communicate on a level that I understand.  Clarity for him, Clarity for me. I love this boy and I am so proud to be a part of his journey.