Raissa  - Season 2 Bio
 
I have twins with autism. It takes up a monumental amount of time, effort, and energy to try to stay ahead of the game. Some days I have to make choices on which twin gets to succeed and which one gets to throw the tantrum. On other days, no one wins and I join in with the tantrumming. I try to savor peaceful days (hours or minutes).
 
Season 2 is all about Me. You’re going to take a tour inside my head. We’ll be starting at a very dark place and come out into the light. I’m giving these tours so that you can be assured that “No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.” I Corinthians 10:13, the Bible.
 
Beyond my faith, I find a lot of the ways out include resources available through Parent to Parent and other support organizations. I do amazing things leveraging the information and people at different organizations. Hopefully, you’ll learn a little about that as well.

Tuesday
Feb142012

Smoldering Noodles

My son is pretty independent making noodles in the microwave. It's important to give your children opportunities to take care of their own needs, and making Yakisoba Noodles is one of the ways I let Daniel practice a grown up skill. He takes the noodle bowl out of the wrapper, peels the top halfway, takes the sauce out of the container, fills it up with water, sets the microwave for 4 minutes, then lets it cool an additional minute before coming to fetch me to take it out of the microwave to put in the cheddar sauce. We've been doing the same routine on Monday nights for the past 3 months, so he's gotten good at making his noodles. I got a little complacent about watching.
Tonight, I was on the phone talking to a parent about the Katie Beckett Deeming Waiver. I heard Daniel turn on the microwave in the other room. At the 3 minute mark, he comes into the room stating, “There is smoke.” I walk into the kitchen, and sure enough, the microwave is smoking. I turn it off and open the door. A huge plume of smoke escapes, and the stench of burning noodles and melted plastic fills the air. “Holy crap! Why is it burning?!” I say. I immediately open all the windows and doors in the kitchen to try to avert triggering the smoke alarm. I used a metal tong to pull out the charred remains of the Yakisoba noodles and run them under the water to extinguish the remains of the smoldering. If I didn't have smoke inhalation before, I did now. I am cool and in control under pressure.
I am also still talking about the Katie Beckett Waiver with the parent on the other line. Between “In box 29, create your own box to indicate you're using Pediasure as your primary diet” on one side, I'm asking Daniel, “Did you remember to put water in the box before putting it in the microwave?” He didn't. That's what caused the burning. At about this time I realize I'm doing something wrong.
Fortunately, I do come to my senses and tell the parent I'll have to call her back. I still have to get the kids fed and ready to be at cheerleading practice in 25 minutes, clean up the mess, call the parent back, and really think about my sense of priorities. But, in this moment, I focus on the autism.
Daniel is stimming on “Holy Crap! Why is it burning?” I think he's captured it a half dozen times on the kitchen webcam. We take a second to talk about what happened and try to get past the imperfection of the situation. “It's OK, we'll make another one,” I say, as I clean out the microwave and he starts prepping a new box, this time with water. I'm impressed that he holds it all together, given the fact that mistakes often trigger meltdowns.
I have no idea if it's ok to use the same microwave that just produced some smoldering noodles, but I don't have a choice in the moment. I press START and watch the machine like a hawk. The second batch turns out fine.
Daphne is not holding it together, “Mom! What's that HORRIBLE smell?” “I'm sorry sweetie, the noodles burned. Let's open some windows to try to clear out the smell.” I can smell that someone in the neighborhood is burning leaves outside, so it's not helping much, but at least the smoke detector isn't triggering. “You close the doors to this other room so you don't have to smell it so much.” Later on in cheer practice, the stress of the sensory overload due to the strong smell comes out in tears.
I text “Kitchen fire, we'll be late to cheer practice” to my husband and the cheer coach, continue to open all the windows to the house, and turn on the attic fan to try to get the majority of the smoke out. I can't tell if the smoke smell is gone because my clothes and hair smell of smoke. But, we get ready for cheer practice anyways and away we go.
After I drop the kids off, I want to stay and watch them practice the routine for the upcoming Cheersport Competition, but I am keenly aware that I smell like burnt toast. I opt to leave, finish my Katie Beckett conversation, pick up more anti-anxiety medication, and go home to finish cleaning.
Even though I was confident in the way I handled the situation, I was unprepared later for the anger that my husband projected at me for not being more proactive about cooking or cleaning up afterwards. I am shaken by his reaction, but understand that it's his way of dealing with the situation. It took his words, “I can't breathe in the house!” to make me understand that he wasn't attacking me, he was panicking in his own needs for safety and security, and probably had sensory overload due to the smell as well. Sometimes, it's tough being a parent to the other parent.
To date, I haven't been able to get the burnt smell out of the kitchen or out of my hair. But the surreality of it all amuses the heck out of me. The key lessons I've learned are this:
+ Fire is more important than a phone call.
+ If mama's cool in a crisis, everyone else will be too.
+ Supervision in the kitchen over microwave meals is important.
+ Taking time to honor and validate feelings in my kids helps alleviate possible meltdowns. I'm learning that it works with Dad as well.
+ I am a super mom.
Be safe and be well.
Wednesday
Feb012012

College Bound - Beyond the Degree

Begin with the end in mind. One day I want my kids to have meaningful WORK that contributes to building a welcoming COMMUNITY for themselves and others with similar disabilities. College is simply a step toward securing meaningful work.

So if WORK is the ultimate goal, what are the employee traits I should start instilling in my kids? Well, this week, it's the traits I've been reading about in Tony Wagner's book, The Global Achievement Gap. (Next week, it'll be the traits I find in the next interesting book on the bookshelf.)

Mr. Wagner lists seven workforce traits that top employers want in a new employee. They are as follows.

Critical thinking and problem solving

Collaboration across networks and leading by influence (looks a lot like teamwork and social skills)

Agility and Adaptability

Initiative and Entrepreneurialism (Self Direction)

Effective oral and written communication

Accessing and analyzing information

Curiosity and imagination

The book talks about how teaching to the standardized test has made teaching these workforce traits an afterthought for most children in general education classes. But if you look closely, OUR kids utilizing special needs services DO get a lot of these skills embedded in IEP goals. Imagine that – there's the something “special” in Special Education.

Anyways, it does give me something to shoot for in designing IEP goals for my kids, and that's what's important to me. I'm reminded of a quote that a parent said in a recent community survey – the world is not designed for my child (with special needs). It's up to me to design the world for my child. That design starts with individual values, promoting self esteem, and capitalizing on the gifts talents we have to share with community. This week take a second to think about the kind of meaningful work your child will contribute in the future.

Tuesday
Jan172012

College Bound – Learning Personal Advocacy

 College for my kids has been on my mind lately. This is because a friend and I are hosting a College Bound Conference for students with Asperger's and assorted learning differences in early March. The story behind the conference is a long story and I'll save that for another time. In the next few blogs, I want to focus on what I've learned through researching colleges and life after high school, and how that applies to changing up goals in my own parenting and IEP's.

The biggest idea I've learned through this process is that once your child has turned 18, he's essentially responsible for speaking up for himself to get accomodations or other supports in college, on the job, or anywhere, really. My extreme intuitive nature make me a natural parent who hovers and speaks up for her kids, but I've learned I can't always be there. So, I'm making changes personally to try to unplug my hovering nature and let them practice speaking up for themselves.
First, I'm encouraging them to answer questions when someone asks them something. I often interpret what they are saying to other people, but I'm going to quit doing that, and let them develop their own way of communicating.
Second, I'm going to question them, “Tell me what you need” to get them to practice articulating their needs, whether it be something simple like a drink, to something more difficult to convey, like comfort. Third, I'm going to encourage appropriate interactions where they have to speak up for their needs in the community, like making them order their own food at McDonald's.
But this concept of personal advocacy doesn't have to remain at home, it can be reinforced in school. I'm going to make sure at my upcoming IEP sessions that we have more advocacy and life skills goals. Now that we've made it through the self calming goals, I want to focus on their understanding that if they are stuck, either emotionally, physically, mentally, or academically, they can ask for help. I want them to be able to articulate what's wrong, come up with potential solutions or accomodations so they can get themselves unstuck, and remember to say thank you at the end when the solution comes through.
When the kids were non-verbal, all I wanted was them to tell me they loved me. In hindsight, it took a lot of building blocks to communication, before I could hear those words. I know in advocacy, it's the same. But by designing with the end in mind, the school will be able to help me understand those building blocks to advocacy.
To get started in understanding advocacy, I found a nice article in Disability Scoop, and online magazine. There's lots of short movies on YouTube that explain how self advocacy works in adults and students. Here's one that's a cartoon and another that's a Parent to Parent of Georgia youth. I hope you decide to teach your children, or even yourself, the power to speak up for your needs.

 

Tuesday
Jan032012

Looking Back and Resolving Forward

 

During the beginning of any new year, people often reflect on the past year and resolve to lifestyle changes in order to better themselves, their families, or their world. For those moms out there with special needs children, I would challenge you to resolve to take better care of yourself in order to be a better parent to your special needs child.

Reflecting on the Past Year
In reflecting on my own observations of last year, I finally proved to myself that Jeff Foxworthy is correct,”I know if mama ain't happy, ain't nobody happy.” In seeking to take care of myself FIRST, I've watched vocabulary, social skills, and technology adaptations really blossom in my own twins. In the last year, some of the tricks that have contributed to my happiness, and have my undying gratitude include, but are not limited to the following.
*The Mighty Pillow. It's amazing how much better sleep is with a new pillow. I'd been using the same lumpy, flat one that I got for a wedding present, 17 years ago. Eww. I've bought myself a new pillow twice this year, and am AMAZED at how much better my sleep is. Go buy yourself a new pillow.
*Vitamins in hidden places. I eat eggs fortified with Omega-3's, and spike my morning smoothie with an Emergen-C vitamin packet. Combined with the better sleep, this gets me raring and going in the mornings. Take a vitamin every day.
*Access my 24/7 support network. I am excessively grateful and proud of my own personal bevy of supporters – otherwise known as my facebook friends. Any time, day or night, I can pose a question, rant and rave, or share and celebrate, and know that I'm not alone. Connect with someone so you don't feel alone.
Looking Forward in the New Year
I have no problems in looking for new tricks to try to better myself. I admit that I have always been a self help junkie. Any given year, I read more self help books than I do fiction. The books I've checked out from the library right this second are What Color Is Your Parachute? by Richard Bolles and Be Different by John Robison. These books, other research on the internet, and facebook advice, have pointed me into utilizing some new tricks to help me be a better me so I can be a better mom.
*PATH Plan Birthday. I've spoken about PATH plans in the past, and have currently finished up the current one that was supposed to last me until 2014. So, for my birthday in February, I resolve to have a new PATH drawn as the primary activity at my birthday party. I'm going to have to have it at a friend's house or rent a place to do it because we don't have any wall space at my house to draw on.
*Listen to more P2P Archived Webinars. There are a BUNCH of webinars whose titles I find fascinating in the P2P archives. I've been putting off going through the archives because I think I don't have time to sit through the whole presentation. I resolve that this year I will bring my laptop to the kitchen, crank up the volume, and scrub stuff at the same time.
*Ask for help. I'm an extremely competent and resourceful person and can do lots of amazing things without help. But, as I'm getting older, I'm finding out it's more fun doing things when you have a few people to help and share the burden along the way. I resolve to ask for more help than I think I need when embarking on new projects.
*Lose some weight. Skinnier parents live longer. I want to be skinnier than my wii Fit avatar (who is at least 2 jean sizes smaller than I currently am). I resolve to make better eating choices and THINK about (not plan or do) incorporating some kind of exercise regimen to help jump start my metabolism. If thinking and writing burned off as much energy as walking, I wouldn't have a lot of weight to lose. This is definitely an area I'll be asking friends for help.
Well, I'm going to stop with four. I'm betting that taking care of me will continue to trickle down and help my kids learn good life lessons like planning, learning, asking for help, and making good snack choices. Hope as you reflect on your past and plan toward your future, you'll be in a better place to be a better you and a better parent too.
Wednesday
Dec142011

Taboo and Talk

When I ask my son, Daniel, about school, I usually get nothing besides “thumbs up”. Lately, he's been communicating to me that the teacher doesn't like certain things, “Teacher doesn't like Sesame Street, Rugrats, or Thomas the Train.” I understand this viewpoint – she's trying to teach the boys in the class that these shows are not age appropriate, especially for 9 year olds. She gives them other choices to try to spark interest and dialog – acceptable shows include Reading Rainbow, Magic School Bus, and Spongebob, but I'm not sure if my kid's interests lie in any of those shows. What I am excited about is that I'm getting more spontaneous back and forth communication at home, which is a HUGE accomplishment. He WANTS to TALK! Any time we get emerging skills is cause for celebration and reinforcement.

However, I can tell he's bothered by the shift in focus of appropriate conversation because of the dialog he comes up with in his GoAnimate cartoons. In his GoAnimate world, Brian, the ever constant kid in trouble, gets grounded for buying a Rugrats DVD when told not to by his parents. He's depicting a kid making a bad choice and getting punished by it, and includes dialog, facial expressions, and consequences. In a strange way I know this is a good thing – he's storyboarding social situations by combining what he's seen between real life and other GoAnimate cartoons. Some kids journal about their perceptions, mine makes movies out of them.

Lately, the spontaneous talk conversations at home have been about companies. Last spring Daniel took a field trip to Chick Fil A's headquarters in College Park. Since then, he's developed an interest in learning about companies in the area. He loves talking about Chick-Fil-A headquarters. He can also name corporations headquartered in many of the local cities surrounding our city, and enjoys naming the companies whose names plasters the high rise buildings in downtown Atlanta. He's been going on wikipedia, looking up companies, memorizing when they were formed, and what industry they represent. He asks me questions like, “Manhattan Associates is headquartered in Atlanta, GA. They were established in 1990. Their industry is supply chain management. What is supply chain management?” I don't mind answering questions like this, but it's beginning to get tiring. I know by staying on and on and on the same topic, I'm teaching him that this kind of perseverance is acceptable, but in reality it's not.

At this point I'm torn about what to do about the situation. I think it's a bit early for an emerging conversationalist to be told by me or by the teacher what topics are taboo and not taboo – I want to reinforce that meaningful dialog that goes back and forth with 6 to 8 interactions is a good thing. However, I also want him to not be the kid stuck on the one-note conversation. So I've gone to the experts to ask how to handle this – my facebook friends (my FBF's)

The FBF gallery has come up with some really amazing ways to make his interest of companies into solid teaching moments. The list included memorizing state capitals and information in line with company searches, researching the history of a particular industry, contacting executives at companies to understand the industry better and get free samples, letting him journal or draw out his thoughts so that perseverance doesn't wear me down, have him talk to the grandparents about his companies, learn about the stock market, compare and contrast marketing strategies for companies in similar industries, and use the computer to make presentations and drawings. I think the simplest idea on the list is to let him talk to other people on the phone about his interests. Grandparents would be a captive audience to encourage him.

I've got lots of ideas to be able to keep Daniel's interest in companies and industries going. We'll try to keep this interest out of taboo by continually changing up the way we talk about companies. Who knows, he and I could start a career in vocational rehabilitation, career guidance, or consulting. Sky's always the limit when it comes to our kids.