Monday, February 27, 2012

the red crayon

Rye loves red. It was an early obsession that made up a huge component of his restricted range of interest. When he was three he would not leave the house unless he had three red treasure rocks in his pocket. If it was red, in his world it belonged to him.

Cedar Ridge Elementary has crayon’s hanging in the hall. One color per room as a way to visually teach kiddos where rooms are located.

Last Friday. Parent/Teacher conference day. 8:00 in the blue crayon and 8:15 in the green crayon.

A lot of feelings typically surround these meetings and more so for IEP meetings for parents of children on the spectrum. When we started school I was told by many parents to “be ready to fight”, “the school district doesn’t do anything”, “you will have to sue to get what you want”. So many go into the school experience with what could be perceived as a negative attitude. We have learned through our journey that if you expect the worst that is probably what you will get. I’m so glad I did not listen to people who told me to go in fighting. For us we have had a collaboration that is remarkable. We love our school. We love the people, we love the atmosphere and most of all we love the willingness to cooperate for the sake of the student who needs it most. We have been blessed with many fabulous teachers over the past three years. All different, all bringing a unique perspective and all willing to put forth an effort for a boy who in reality does not really care for any of the dynamics that typically make school a success.

We have also had the dynamic of a team leader who does not always have the easiest job. She doesn’t always get to be the one who the kiddo likes the best, she is certainly never the most popular, she is the one who (god love her) my son called “Pink Pants” for two years because his Kindergarten teacher jokingly said it one time in passing. She is the one who has to deliver the news to parents and (teachers for matter), that you don’t want to hear. For us, at times we have disagreed, we have fought it, and then we end up eating our words because after we take a moment to remain open we realize that it is okay to trust in a system that despite its faults, for the most part, actually works. It is also completely clear and appropriate that our team leader is fittingly located in the red crayon of Cedar Ridge Elementary. How wonderful for my boy to find comfort in the red crayon, the place where Rye goes to learn and receive support, the place to retreat when school just sucks.

Because of our situation I spend a lot of time in meetings at schools, I understand how easy it is to blame others for your child’s difficulties. I also understand that for some who are not as lucky as us there is and will be a time for due process.

Here are a few simple facts that have made all the difference in the world for us at our school:

1. Be appreciative. For the most part, Teachers are there because they want to make a difference. They are clearly not in it for the money.

2. Be a part of the solution, not a part of the problem. Volunteer, involve yourself in the school, and take the time to really know what goes on in your child’s classroom.

3. Show up, make yourself present. Don’t ever assume what is going on in a classroom, observe, watch and you will probably be pleasantly surprised at the amazing things happening.

4. Make your teacher like you; they will then like your child. It is important to try to get along.

5. Bring food! I have yet to show up at an IEP without a snack for all to share.

6. Come in with an attitude that it is an entire building supporting your kiddo, there is no staff that is not involved in some way in the education of your child.

At the end of the day, it doesn’t matter what color the crayon is. But what you should realize going into the school, is that there are possibilities in all of the crayons. There’s a time to fight and there’s a time to kill ‘em with kindess. Mostly, from our experience, it’s the kindness, the listening, the willingness to be open-minded, that will provide the best results for your child.

Wednesday, February 22, 2012

Milestones and Bravery

As a parent, you see your children develop and it's very exciting and fun. You watch as they learn, mature and master skills. I remember Rye hit a milestone at 5 months. I can't even really remember what it was really, but it seems now like it was this awareness he had of his surroundings and he advanced out of infancy. But I remember it like a light switch went on, and just like that, one day… he woke up and had a significant advance in his development. With Rye, it's always been the case where he mastered a skill before actually incorporating it. For example, he teetered around walking for weeks, then one day he walked across the room and never looked back. Same with potty training. And riding his bike without training wheels.

Recently, we have seen him learn to read. He's advanced from site words to reading sentences and sounding out complex words in a matter of months. This obviously wasn't mastered as quickly as walking, or potty training or riding his bike… but that's understandable and we still have a long way to go. Some things take more time and a higher degree of learning than others, and when it's harder for him to master, the more resistance he has to doing it. Most of us can relate to that. But the most encouraging thing about this journey is seeing Rye's bravery develop. It can be hard for all of us to learn new things and it takes courage and a certain level of bravery to do so. I remember, not so long ago, the meltdowns that would last for hours over the smallest things, like "turn the movie off and come wash your hands." We're seeing less and less tantrums, that last for less and less time. Part of this is maturity, part of it is therapy and part of it is discipline and consistency (on our part as parents, not Rye's).

We've mentioned before about our fine little line between making him engage and do things with others for the sake of development, and NOT forcing him to do things for the sake of everyone's sanity! But the tide is turning and transitions are becoming easier for him. Wyatt loves to play sports. Last Fall, we started playing football in the backyard. I would make Rye play for 10 minutes (albeit in his Storm Troopers suit), then Wyatt and I would play lightsabers for 10 minutes. VERY reluctantly, he would agree. Week after week, game after game, we'd negotiate how many possessions, how much time we'd spend playing football vs. lightsabers. Wyatt's new thing is basketball. This past Sunday Wyatt came in, said, "Dad, let's go play basketball." I told him to give me 10 minutes and I'd be out. I was putting on my shoes, Rye was playing Wii, and I thought, he needs to play with us. So I shouted up, "Rye, come shoot baskets with Wyatt and me." Waiting for a whining denial, I was surprised to get a big sigh and a "oh, ok, but just for 10 minutes." I almost fell over. This was huge. And the biggest thing about this was there was no negotiation and he didn't tell me we had to play lightsabers afterward. Sunday was another notch up the bravery scale. Sunday was a milestone.

Friday, February 17, 2012


Rye has been a fish in the water for as long as I can remember.  He also has absolutely no fear.  Because of this we started him in swimming lessons at the age of four.  He was in swimming lessons one to two days a week from age four to age eight.  He has learned all four strokes and has been swimming at Mizzou Rec in lessons for the past two years.  One night when we were leaving swimming lessons and I saw a familiar face.  My friend Terri who works at the sheltered workshop in town and who has a brother on the spectrum.  She coaches various Special Olympic Teams and has for years.  She proceeds to tell me that when Rye is eight-years-old he can join the team.

So... this year was our year.  We started about a month a go.  The first two weeks were a little rough. Rye was freezing!!  Who knew that Mizzou Rec had to keep their water at 75 degrees or lower for NCAA record breaking purposes.  Terri and I discussed options on how to "warm" Rye up.  She suggested a diving shirt.  I did a little research and found a scuba suit that is used by many divers and swimmers to keep warm for training purposes.  Rye loves it!  He calls it his magic suit.  He wants to wear it when he isn't swimming.  I think it is actually a sensory support.  He says it "makes him happy".

 Over then next few weeks we see some progress in listening and swimming, as well as no complaints about being cold.  I took Rye this week and we arrived a little early.  I told him to get ready and I saw him go over to a glass window at the pool and look in the reflection.  Rye looks in windows/mirrors a lot and likes to script movies and act out parts to movies.  I stand back but while he is putting his swim cap and goggles on I hear this...

Okay, here we go.
I am speed.
One winner, 4, 2  losers.
I eat losers.
Breakfast? Maybe breakfast? could be good ...
No, no, no, focus.
Faster than fast, quicker than quick.
I am Lightning.

Me:  Huh, what? Is that from the Cars movie?

Rye:  Look out mom, it's time for speed. 

He walks up to Terri and says, "can I get in now?"

Terri:  "no, go stretch with your team"

Rye glares at her and says "Ka-Chow" then runs over to stretch with team.

So we are still working on the behavior part, but he loves swimming and Special Olympics is proving to be something exciting and really fun for Rye. What a great organization.  I am so thankful that Terri has invited us to join in the experience.  Tomorrow Terri is taking the "plunge" in a Special Olympics fundraiser the Polar Plunge.  Please help us support her.  Click HERE to donate to Terri's efforts. 

Wednesday, February 15, 2012

Is it all meant to be?

Rye said today I wish you would have a baby. Having children after having a child with autism is an issue many parents struggle with. We didn't know Rye had autism when we had Wyatt. I have always been glad that we didn't because I didn't have all the worries that go along with knowing. I know several families who knew their first child had autism and there was and is constant concern about the fate of their newborn. Ironically enough when Wyatt was born I was worried that there was something wrong because he slept through the night, ate on a schedule and rarely cried. This was completely foreign to me after having a baby that cried, would not eat much at a time and who rarely slept. In fact the night we brought Wyatt home from the hospital Rye got up more than Wyatt.

Once we were in the position to make this decision I have to admit it weighed on me. There is concern and anxiety and to be quite honest the thoughts of people judging your decision knowing that having another child on the spectrum is probable.

For us, we made the decision and decided that we wanted more children after knowing but unfortunately it is something that has not happened. We have tried for years and have seen various doctors it is just something else that you don't really have any control over. The issue has also allowed me to connect to many other women, and gain an understanding of just how many people have issues with infertility. There are a lot. It sucks to want something so much and realize that it isn't going to happen. I have to say the "acceptance" of knowing that I won't have a daughter has been way harder for me than learning that my child has autism.

I will probably never know if we had another child would he or she have autism? But one thing that I have to believe because of our journey is that no matter what happens it is all meant to be. I'm very interested to know what others think about having additional children after having a child on the spectrum. Let us know your thoughts. What do you think?

Saturday, February 11, 2012

Off the Charts

Rye's teacher has implemented a behavior charting system this year for the students to mark how their day went. It ranges from Bad to Off the Chart. It's an incentive and students get a clothespin on their status for the day. It's a great tool that the students really seem to respond to. Rye does anyway. But then again, he's accustomed to such charts, token economy systems, reward incentives and various other positive behavior supports.
They send home a sheet every day with their homework with their status for the day circled, which you have to sign. It's also just a great, simple way to communicate with parents about their kids' day. Rye is typically in the "Good" slot, with "Great" and "Off the Charts" above that. This week, three days (out of four because they didn't have school on Friday), his days were marked with "Off the Charts!" We were so amazed and proud and happy for him.
It's a big deal for a kid on the Spectrum to "hold it together" for nine hours in school, let alone achieve "Off the Charts" status. Heck, it's a big deal for any typically developing person to hold it together for nine hours anywhere! But imagine being at work and not being able to adequately form sentences to express to your boss why you did, or did not do something. Imagine their frustration that you can't explain what you did. A lot of people would give up that job. Quit. Some bosses would give up on you too. It's a challenge for everyone involved to get a kid on the Spectrum to focus, learn, progress… and behave well along the way! But they do it. WE do it. Every day Rye goes to school, gives it his best shot and his teachers, aids and friends, give it their best shot too. Pretty amazing the effort that goes into one kid's education and development. Then again, the kid himself… who came home with three "Off the Charts," is pretty amazing too.

Monday, February 6, 2012

Freaking anxiety...

Today was one of the days I dread, actually I HATE.  One of the days that make me wish I could grab autism by the neck and choke the life out of it.  Today I picked up Rye and I could tell that he wasn’t himself.  He was in the place he goes when he wants to escape but not to a fun, happy world full of Star Wars and Lightning McQueen scripted conversation.  He was in the place that is dark and dreary.  He was in the place where he goes when he can’t tell me what is really wrong and I’m not really sure that he knows other than he doesn’t like to be there either.   I can tell that he is trying to keep it together and knowing Rye as well as I do I also know it is best to not say anything at this point.  

I sign him out, gather his things, hurry Wyatt along and tell Rye that it is time to leave.  He walks all the way to the car with his head down and just before we get there I ask, “What’s wrong Bubble?”  He loses it.  Full blown crying “I want to go home, my real home, and I am never coming back to school again.”  He starts having the scripted fit he has every time he gets really upset.  “I told you a zillion times MOM I want to go home.”  When he has this tantrum he isn’t talking about where we live now he is talking about Colorado and the home we moved from when he was 3-years-old.  We moved over 5 years ago.   I don’t think he really remembers living there, maybe he does, but what he does know is that if he goes there he can escape what he is feeling here.  Escape his present life; escape the uncertainty and uncomfortable feelings he is having.  I think in his mind “going home” would mean a complete escape to a reality that doesn’t exist, a reality where he could cope with his feelings and feel in control all the time.  

I try to ask what happened and he just can’t tell me.  I am able to get out of him that another child was crying, he tried to “make him feel” and then the kid said he wasn’t Rye’s friend.  I probably won’t ever know exactly what happened and after just a few questions Rye is crying and saying “forget about it mom.”  He then says he is going “to quit himself.”  I have to tell you these are the moments that kill me; these are the moments that make me feel so bad for him, these are the moments I would do anything to make social interactions easier for him.  It is in these moments that I understand that it is not anger that is driving these feelings, it is anxiety.  There is something that you absolutely have to understand when it comes to your child on the spectrum.  Ninety percent of the time it is not anger it is ANXIETY.  When you are first starting out it is easy to think it is anger, he is mad, he doesn’t like what is happening so he is frustrated and “throwing a fit because he is mad”.  I didn’t understand this at first but as time goes by I understand it better all the time.  Anxiety turns inside out into behavior that looks like anger.  I believe the initial feeling is anxiety that triggers anger because of a complete inability to cope with a social situation or overwhelming environment.   When you feel like you are about to lose it because your child is having a tantrum take a step back and try to look at the fact that they probably aren’t mad they are stressed.   

Rye yelled at me all the way home today.  It definitely wasn’t what I wanted to hear all the way home, it raised my stress level and it definitely triggered some angry feelings on my part.  Today I pulled into the garage, got out, opened the door to the back of the van, and I gave my boy a long hug.  “I love you Bubble, I’m sorry you had a bad day, Mommy wishes she could make it better.”  Rye put his head on my shoulder for about a minute.  I just hugged him and rubbed his back.  I don’t always handle situations like this as well as I did today, it is so easy to become frustrated with your child when they are upset.  

I will keep trying.  I will try my best not to respond in anger.  I will remember that it is anxiety and a complete inability to cope.  I will however hate days like today.  I will hate autism.