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.

Wednesday
Sep012010

Meditation and Worry

I'm taking a break from being depressed to give you a little insight into turning worry into something more positive.

 

Definitions from dictionary.com

med·i·ta·tion[med-i-tey-shuhn] - continued or extended thought; reflection; contemplation.

wor·ry [wur-ee] - to torment oneself with or suffer from disturbing thoughts; fret

 

Like you, I suffer from days upon days of high stress. My hair is turning prematurely gray, the middle of my torso is suffering from cortisol/stress related weight gain, sometimes I don't sleep. A lot of my stress comes from constant worrying – money, personal, family, school, community, world events.

 

My sister tried to get me to use meditation to help alleviate the stress. She even turned me on to Meditation for Dummies. I didn't learn anything – at the time my worry and anxiety level outpaced my dummy level.

 

Rick Warren, of Purpose-Driven Life fame, spoke on a DVD that finally explained meditation to me. “If you can worry, you can meditate. Meditation is worrying about something positive.” I've always believed in the power of positive thinking, but never thought about just dwelling on positive thoughts all the time.

 

So here are the thoughts I worry or meditate on.

Money – God loves me and will provide for my needs. (Luke 12:22-26)

Personal and family – Diagnosis does not define who I am. (Kathie Snow)

School and Community – Persuasion means to be polite and persistent. (Dave Blanchard, AADD)

World Events – You can change the world starting with your own life.

 

I won't say I've stopped worrying, but I don't spend all my time doing it anymore. I'm still overweight but at peace with it. I've started researching hair coloring options. And I'm sleeping better at night. Today, I'm worrying about the meaning of perfect peace.

 

Luke 12: 22-26 New International Version of the Bible

Then Jesus said to his disciples: "Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?

Wednesday
Aug182010

Episode 2-01: Starting At a Dark Place – The Bottom of Depression

My dark place, when I am at the bottom of my cyclical depression, feels like being trapped in an outhouse in 100 degree weather. It’s dark, dank, and stinky. I cry all the time, despite my medication. I throw bridezilla style pity parties in my head by questioning everything – faith, past, future, disability. And I tend to make poor choices (chocolate cake for breakfast).

Sometimes my dark place triggers my need for death – kill myself or kill my husband. I go through the litany I’ve created to counteract the thoughts – Killing yourself is insanely selfish and your kids will wind up in bad foster care. The cops will figure out if you’ve killed your husband and your kids will wind up in bad foster care. I don’t ever consider killing my kids, though I have considered forgetting to pick them up from respite care at Hope House.

 My daily list to get me through the dark place.

  1. Take care of me

Meds, therapy, sleep, pray, write, and a healthy dose of no. No new projects, no helping others, no big spending, no critical decisions. Occasionally I remember to include good nutrition, exercise, read my bible, and actively practice forgiveness. When momma’s not happy, ain’t nobody happy.

 

  1. Take care of my kids

If I can’t remember the last time I fed or bathed the kids, it’s time to let someone else help me do it. Spend a ton of money we don’t have on childcare. Accept that setbacks will occur in their autism due to my depression.

 

  1. Take care of my job

Focus on the minimum. I’m a stay at home mom foremost, so I hire childcare to help me with the kids. Chores get shrunken – make there’s enough underwear, dishes, and reduced allergens for everyone to survive the day. My other job is to help families in my community. Limit my help to others and refer people back to Parent to Parent.

 

  1. Communicate my needs to my core relationships.

Been married for 17 years, but my husband still can’t read my feelings or my mind. Resentment builds up and I blow up, classic passive-aggressive style. More therapy and more practice saying my needs help me heal faster.

It takes a while (at least a month) to get out of the outhouse into the sweet smelling fields outside the outhouse. When I do, it still takes a while to cool down and get the stench of depression off me. Forgiveness plays a big part of my healing process. I’m learning about forgiveness through Celebrate Recovery – a faith based training/support group meeting that helps people seek freedom from their hurts, hang-ups, and habits. Though it’s meant for people and their families who have addiction issues, I’ve found it extremely helpful in helping me deal with my personal anger, resentment, depression, and codependency.

For more information about Celebrate Recovery, here’s a book and a Wikipedia link. Meetings are held across different churches across Georgia. Check your local newspaper or search online to find one near your community. If you’re suffering through depression, don’t give up hope. Get help. Call P2P and find another parent who has been there. Step out of the outhouse and into the sweet fields outside.



Friday
Aug132010

Episode 2-02: A Powerless Moment at Monkey Joes

At the bottom of my depression, hopeless thoughts triggered uncontrollable crying. My depression/anxiety medication was not working. I was crying about 40 to 50 percent of my waking hours. I scheduled a doctor’s appointment to get some medical help for myself.

Before the appointment, I was pretty successful in hiding the tears from my kids – when they see me upset, they have shorter fuses and have more “microburst” tantrums. They knew I had been really sad for a week.

July 20 – the day of the appointment

9:00

Oh no! We all woke up late. I called the daycare center to say we’d be there by 10AM. They replied that they would be going to Monkey Joes that day. I said we would meet them there.

10:00

Arrived at Monkey Joes.

10:15

Daycare still not there. I got a little nervous, but was confident that they would be there soon. My doc appointment is at 11:15.

10:25

My anxiety was building. I started to cry.

10:30

I called the cell phone number of one of the daycare workers.

Me: Where are you?

Them: We’re here at Monkey Joes. Where are you?

Me: At Monkey Joes. Oh no! (my heart sank). Are you at the one in Newnan? (Newnan is 26 miles/35 minutes away).

Them: Yes – didn’t I tell you we’d be at Newnan?

Me: No, we’re at the one in Fayetteville. I’m not going to bring them out to Newnan – I’ll figure out something else to do with them. We’ll see you tomorrow.

10:33

I was panicked. I was not going to make my doctor’s appointment. My daughter picked up on my anxiety and started circling me, prodding me, and demanding my attention. I put her off and called the doctor’s office. The scheduler was sympathetic to my situation and asked if I wanted to reschedule.

10:36

MICROBURST.

My daughter: MOMMY! YOU’RE NOT LISTENING! She punched me and started to scream.

Me: (To the scheduler) I’m sorry. (Get punched, screaming in background). I can’t do this. (Get punched) (Me sobbing) Please don’t charge me a cancellation fee – I have to go. (To my daughter) STOP YELLING AT ME! I JUST NEED A MOMENT! (Click).

10:37

The only thing heard was the sound of inflatable air blowers. All the adults and some of the kids were staring at me and my daughter who were both sobbing. At this point, I had no idea where my other child with autism was. I felt powerless to control the situation. I needed backup, and fast.

10:38

Through tears and sobbing I called for backup – my primary babysitter, Jennifer. What a Godsend. She was able to get to me and the twins within an hour (even though she was out of town as well). She watched them while I sat on a bench outside in the heat and cried and cried.

 

I don’t have a lot of available family in town, and much of my support team is out during summer months on vacation and taking care of their own kids. Had I not gotten in touch with Jennifer I most likely would have called 911 and taken my chances with “DeFaCS”. What a horrible situation to be in.

You may be in the same situation, in the same weepy darkness. You are not alone. Even though the event is almost month old, I still think about the fact that I still don’t have a plan for situations like this. It is tough to admit being powerless about what others may consider an easy situation.

What do you do when you feel powerless? Do you have a plan? Not the big, expensive kind like a Last Will and Testament, but just a little plan for when you “need a moment?”

2 Corinthians 12:7-10 (New International Version, the Bible)

 7To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. 8Three times I pleaded with the Lord to take it away from me. 9But he said to me, "My grace is sufficient for you, for my power is made perfect in (your) weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 10That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

 

Wednesday
Jul282010

Season 1 Recap 

Season 1 Recap

I’ve been blogging for Parent to Parent for a year now, and thought I’d give newer readers a recap of what Raissa, Season 1, has been all about.

I have twins with autism. It takes up much time, effort, energy, and sanity on my part. Many of my blogs focus on how things fail and succeed in many everyday situations. I stay sane and sometimes ahead of the game using tools that Parent to Parent provides online, in person, and in the community. Consider using these tools.

 

  1. Supporting Parent program. Talking to another person who has been in my situation usually calms me down.
  2. Special Needs Database and Roadmap. It’s like having a directory of all things disability related in my community.
  3. Parent training. You may think you know it all about Education and Health related issues, but Parent to Parent Trainings always blow me away with their information. The speakers are great and the handouts that you get are remarkable.
  4. Navigator Team. Mine does parent support groups at a local Chick Fil A. What does yours do?
  5. The people at Parent to Parent. They treat each of my strange (and sometimes repeated) questions with dignity and grace, and I feel cared for anytime I make a call to them.

Season 2 is all about Me. I’m going to take you through my thoughts, responses, and actions dealing with having 2 with autism. We’re going from a dark place in my life to one filled with hope. The Season 2 Opener starts with my fascinating trip to visit my parents in the Philippines and the fallout that occurs. Stay tuned!

Wednesday
Jul142010

Routine Setbacks, the International Version

My husband and I took the twins to see his stepbrother, Tom, on Grand Cayman Islands over spring break. It was a good trip and quite rustic. Too rustic for my gadget prone twins. The twins are accustomed to internet surfing, watching TV, and playing some type of game console (currently the wii) on any given day. There was no computer, no video game system, and no cable at Uncle Tom’s house. Once the twins figured this out, they were ready to go back home.

Finding something to do everyday was an adventure. Every morning, they would ask, “Is today Wednesday?” We had told them Sunday when we got there that we’d be going home on Wednesday. When we told them no, that today was NOT Wednesday, they would circle the house like little fish in a fish tank, looking for something to do. Going outside was not an option – neither of them liked the heat, nor the free range chickens in the backyard. Plus, I was a bit wary because Uncle Tom’s condo backyard butted right up to the jellyfish bottom bay. So, we could look at the water, but we could not touch it. We ended up every day doing about four hours of sightseeing in the hot sun, to sap their energy. Two of the days, we went to see the standard touristy things like glass bottom boat sailing and the Turtle Farm. One of the days, we even managed to lose my daughter, but found her in a nearby skateboard park watching the “dudes grinding their boards”. That’s a whole story entirely. Then, every afternoon, we went back to cool off at Uncle Tom’s condo by watching a few DVD’s he had on hand.

Wednesday morning came. And the kids were ready to go back to the airport. We spent the morning touring the eastern side of the island, then got packing to go to the airport. Getting through check in and security was a breeze since we knew what to expect. Then, it was “wait for the plane” time. And that’s when disaster struck. Some poor soul on the flight crew required an ambulance for transport back to a local clinic, a half hour before departure time. Within moments of the catastrophe, an announcement saying the plane was delayed and further information would be available in a half hour came over the intercom. A half hour later, a new announcement came over the PA system saying the flight had been canceled and for all passengers to go back to the ticketing counter.

The preflight checklist/schedule we had written for today said nothing about going backwards. We had to come up with an excuse to inform the kids that we would no longer be departing, would have to stay away from home for another night, and would have to go back to Uncle Tom’s house. What we came up with was, “I’m sorry, the plane is broken and will be fixed tomorrow. We have to come back tomorrow.” This was not well received. We had to manage their respective meltdowns, get our copy of the visitor card from Customs, and wait an hour to get our checked luggage back. During this period, I did all I could do to make empty promises to the kids – something, anything, to help them deal with the new situation. “What’s it going to take to get you through this? Is all you miss is the wii? We’ll buy another one for Uncle Tom’s house. You can have all the ice cream you want. You can eat all the Doritos you want. You can stay up all night. We’ll buy a new computer so you can have internet tonight. Yes, you can have a pony….” In the back of my mind, I was hoping my husband was going to rebook us with new one way non stop tickets to Atlanta. A wii or a pony would be cheaper than walk up one way tickets from Grand Cayman.

Once back through customs, my husband foresaw the pleading wasn’t working, and the smoldering volcanoes in my children’s eyes were about to erupt. He called Uncle Tom to come and rescue me and the kids while he dealt with the luggage. One of Uncle Tom’s co-workers loaded us up in the cab of the little company pickup truck and we headed to Uncle Tom’s office. He had 4 computers on a LAN system and all of them were connected to the internet. I use food to soothe me most of the time, but it was amazing to see how a mere 90 minutes reconnected to You Tube and Uptoten.com made life OK for the twins. My daughter accidentally called up a blank Outlook Email letter and asked me to help her compose how she felt. The email (which ultimately got sent to my husband) said “Dear C-3PO, I’m sorry. The plane is broken. We will go home tomorrow. Love, Daddy.” I was shocked, to say the least, that she was able to express some of her disappointment in some kind of written form to help her calm down. My kids do surprising things every day.

On the way back to Tom’s condo, we stopped at the other island chain of grocery store and bought favorite foods for everyone. Then back to Tom’s, frozen pizza for dinner, extra anti-anxiety meds, for mom, baths for everyone, and then we all watched “Special Features” and “Previews” from the movie “Bewitched” all night long. Everyone got a little something to get them by. Except my husband, who ended up staying two hours on the phone to get us rebooked on a non-direct flight back to Atlanta. I was especially proud of him being able to keep it together on a harrowing day like this.

 Traveling Thursday was uneventful compared to Wednesday. My daughter put on her shoes and socks excited for the trip home at 5:30 AM. She didn’t understand that she still needed to change out of her pajamas, and that nothing was going to happen at 5:30 AM. The kids were professionals now going through security, customs, changing gates and planes, and baggage claim. We left Grand Cayman at 2:30 PM Central Time and rolled into Atlanta at 10 PM Eastern time. The one glitch in the travel plans was explaining to the kids that they could NOT get on their beloved game and computer systems once we got home at 11 because it was time for bed. The only way I could calm down my tantrumming daughter was to remind her that she didn’t have to sleep all night until she could get on the wii. She woke up at 5 AM Friday to begin a full day of gaming.

Were there lessons I learned on this trip? Yes, but I’m not going to think about it right now. I just wanted to give you a glimpse into our lives. Also, I wanted to give you hope that if we can go on a 4/5 day jaunt island hopping in the Caribbean with our kids with special needs, so can you. It won’t be easy, but it will be memorable. And rent a small computer with a dial up connection once you get there.