Friday, July 22, 2016

Life and Down Syndrome Deconstructed

Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.
- Philippians 4:9 NLT -

I was caught off guard when my daughter, Moriah, shared a couple of recipes with me.  One was Deconstructed Lasagna and another was Deconstructed Apple pie.

Deconstructed?  Doesn't that mean you take it apart?  Aren't you wanting to "construct" a recipe.

This new buzzword in cooking didn't make sense until Moriah began to explain.

"Mom, like you know how you don't really like making lasagna because it's time consuming and a bit complicated?  When you deconstruct your recipes you reduce it to its simplest forms and decide how you want to put it back together."

Deconstruct - reduce (something) to its constituent parts in order to reinterpret it.  Break it down and re-invent.
Light Bulb moment.

It made me realize that I "deconstruct" things ALL the time.

Especially in the area of Life - and even more so because of our daughter, Bethany, having Down Syndrome.

I've learned to simplify - or deconstruct my schedule - breaking it down into tasks, analyzing each action and asking myself
"What is the best of the best things that make life beautiful and peaceful?"
"How can I deconstruct my day to make it productive but not chaotic?"
credit facebook/DoreenVtrue444
I know my day goes so much better when I connect with God. So I pray while I drink my first cup of coffee and I read my Bible during my 2nd cup. I've learned over the years, this woman cannot make it on caffeine alone, but I need a "power" fill up to get me through the day!

I know if I sweat today I'll smile tomorrow.  So I simplify my exercise routine to walking on the treadmill and watching HGTV at the same time! Win-Win!

And so go my days and weeks.  Weeding through, discarding, re-prioritizing; in other words deconstructing life. Re-inventing and practicing until I find what works best for me - for Bethany.

Disabilities, and in my case, Down Syndrome, are the perfect situations to deconstruct, reinvent, and reconstruct.

With Special Needs, I've learned to deconstruct everything from going to the store to teaching tasks:

  1. Determine my end goal
  2. Break down task into easy steps
  3. Don't assume anything - Make sure she understands my instructions
  4. Evaluate what works and what doesn't
  5. Keep it fun (ditch the frustration)
  6. Repeat until I find the special "recipe" that works for Bethany to learn and move forward

It's kind of like my own personalized IEP but better. 

Because I'm in charge of re-inventing the content, form, speed, mastery, steps, of Bethany's learning.
God of Grace, Joyful Journey, Special Needs Parenting, Christian Famiily 
Content - 
The "content" may be familiar to every person, but to a child with special needs, learning might be streamlined and simplified. Or it might need to include multi-steps before mastery can be understood or achieved.

Form -
Everyone learns differently. I have to figure out what combinations help Bethany learn best: visual, kinesthetic, auditory, reading-writing. 

Flash cards, apps, hands on demonstration, books, YouTube, unit studies, comprehension sheets, tutors, math manipulatives, charts, rewards, lists, learning games, older brothers and sisters -  are some of the ways I've employed to help Bethany deconstruct life so she can reconstruct her own recipe for success.

Taste - perhaps this is the most important thing for me to remember as I try to simplify and reconstruct a life that works for me - for Bethany.

I can't skip the "seasoning" that makes learning and life delicious; joy, love, praise, and satisfaction in a job well done. 

I've found, the Lord is the sweetest ingredient of all. Without Him laced throughout our doings, our life is flat, boring, tasteless. He's the sweet that is lasting, giving us strength to journey on!

Cindy Barclay

Thursday, July 21, 2016

When Vacation Seems Overwhelming

So God blessed the seventh day and made it holy, because on it God rested from all his work that he had done in creation.
Genesis 2:3 (ESV)

Vacation - for many of us, this might seem like a foreign concept. Or maybe vacation simply means more packing, more laundry, more logistics and more exhaustion. Unfortunately, we live in a very busy and stressed society that often jokes about returning from vacations more tired than when we left.

When did we forget how to relax, to unwind, to just do nothing? When did we start feeling guilty for sleeping in and laying on a couch and reading a book?

Maybe we are putting too much emphasis on vacation as an event, rather than ensuring that our lives are filled with mini-vacations. What would it look like to have a break every week, every day?

I know for myself that my goal is to have quiet time with God every day, to have a Sabbath day every week and to have a weekend getaway once a quarter to just rest, decompress and ideally return refreshed. While I have yet to achieve my ideal rhythm, if I don’t at least have a goal then I know I will never gain some downtime.

May I encourage you to consider the following “vacation” ideas to add to your rhythm of life?

1) Daily quiet time and solitude - this doesn’t need to last an hour or even thirty minutes (although that would be so nice, right?). Rather, it might be ten minutes, or five, or even just 60 seconds. Lock the door on the bathroom, go hide in the garage, or take a slightly longer shower. And I would encourage you to not use this time to make a to-do list or to think about things to do. Let the Holy Spirit whisper to your heart, take a moment to pray and worship God, and maybe just enjoy the sunset.

2) Weekly breaks - I know this starts to get really challenging, but our bodies and spirits are designed to enjoy some downtime. Whether you need to lean on family members, friends, or your church, don’t be afraid to ask for help in order to gain a few hours of alone time. Whether this becomes a time of great spiritual refreshment, or uninterrupted grocery shopping, it is important to have in your rhythm.

3) Regular getaways - sometimes we just need to say no and get away from the hustle and bustle of life. A quick drive to the beach or mountains, an overnighter in a different city or even just visiting old friends can provide so much refreshment to our souls. If your life is anything like mine, these getaways must be put on the calendar or they will never happen. I will never have the time to rest and relax - I must make the time. And don’t ever feel guilty for enjoying your getaway!

Maybe if we were all a bit better at the smaller breaks in life, we would be able to better enjoy and embrace our bigger vacations. Maybe if we practice how to ask for help, how to enjoy solitude and how to say no on a regular basis, we can then embrace a long vacation without anxiety and guilt. Now, I wish I could guarantee that airlines and TSA and traffic and such won’t add to anxiety on vacation, but at least you will enjoy some inner quiet and rest that so many of us are yearning for.

Lord, You never designed us to run at full speed 24/7. Rather, we are built for rhythm. A time to run and a time to sit. A time to work hard and a time to rest. A time to keep a schedule and a time to get lost in the moment. Help us to find this balance, to embrace rest and relaxation and bless our vacations this summer. Amen!

~ Mike

Wednesday, July 20, 2016

The Full Life God Intended for Caregivers

Therefore Jesus said again, “Very truly I tell you, I am the gate for the sheep.  All who have come before me are thieves and robbers, but the sheep have not listened to them.  I am the gate; whoever enters through me will be saved. They will come in and go out, and find pasture.  The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”

John 10:7-10 NIV

Photo Credit: Special Purposed Life

Without even trying, our daily lives can become busy.

Meals always need to be cooked. Messes need cleaned up. Everyone expects their clothes to be washed. And that dishwasher won’t unload itself. Then there is the work that is done that actually pays the bills.

There are also extra things that happen in my household. These are the jobs that come with raising a child with special and medical needs. The medicine needs to be given twice a day. The nebulizer is turned on and off twice a day. My daughter is placed on her vest airway clearance twice a day with my help. The bi-pap must be turned on every night and checked at least once after she falls asleep. Appointments for specialists must be scheduled and kept.

A few years ago, I was struggling. I felt very busy moving from task to task never quite feeling like I was ever getting ahead. The day ended, I mentally applauded my efforts and then sighed knowing a slightly different version of this day will come again. Years of caring for a child with medical issues weighed on me. I had always hoped my daughter would grow up with decreasing health needs. But, more (not less) diagnoses and their treatments were added over the years.

Yes, my life seemed very, very full.

Is that the full life Jesus wanted for me? Did Jesus want me to fight my way through the days serving my daughter with a sense of being overwhelmed?

Nope. It was easy to know that I shouldn’t feel that way, but it was harder to change it.

There were many changes I made in my attitude and heart to stop feeling like my life was too full. The main thing I had to do was refocus. Jesus wanted to be my gate. He wanted me to come to him into a place of pasture where I could go about my day, care for my child, and enjoy my everyday life. It is through him, that I could find a place of mental safety to allow myself to better serve my child.

Jesus does not want our days stolen away by cares, worries, and chores. Focusing on what needs to be done means that we aren't focused on the life giver. God wants our days lived to the fullest in every way assuring us peace when we feel like our life is too full.
God, I thank you for giving us life and life to the fullest. I pray that those of us caring for a loved one will find balance and hope in you. Help us not to be distracted and overwhelmed by the work we need to do daily, but help us to thrive in the place you have called us to be. May our lives be lived to the fullest potential as we help our loved ones reach their fullest potential too. Amen.

Tuesday, July 19, 2016

It's How God Sees You

“What’s the price of two or three pet canaries? Some loose change, right? But God never overlooks a single one. And he pays even greater attention to you, down to the last detail—even numbering the hairs on your head!” Luke 12:6, MSG

“The world is just going crazy, Aunt Deb.”

“I know Mags, I know,” I replied to my niece a couple weeks ago at a family graduation party.

We talked about our views on current events. What a great topic for a party!  With Dallas, Minneapolis, and New Orleans on both our minds—not to mention events in Orlando, France and Baton Rouge--we are still reeling, processing and trying to pray through one tragedy when a new one hits. At least that’s how I feel. As my 16 year old Brandon said, “It’s terrible that all these events start to blur together.”

What does any of this have to do with being a special needs parent?

We need only to go back and read Michele Bovell’s post to see how having 5 black sons, one with moderate autism, affects her and her family.  Michele writes, on April 17, 2015, 
“My husband and I have taught the rules loving black parents share with their children and pray to God they remember when confronted by law enforcement and adrenaline is flowing: hands where they can see them, no sudden moves, absolute compliance, no resistance.” 
She teaches these rules to her sons but wonders if Daniel, her gifted son with moderate autism, will be able to remember what to do during a heated situation and she fears for his safety.

For my part I have two sons who are white (like me) and am married to a wonderful Christian man.  One of my sons, like Michele’s son, has autism. I too fear for his safety for MANY reasons, but have never been afraid for him, or for Brandon, my neuro-typical son, in relation to law enforcement. It has NEVER crossed my mind to talk to them about “the rules.”  And not just because my husband has been a police officer for 21 years, but because we are all white.

Mike being a police lieutenant these days in a large city does make me more worried and afraid than I used to be with the current racial tension. Besides a great sadness, I feel helpless.

Thinking about all this recently I had a light bulb moment. It won’t sound like much, and it isn’t profound, but the words that I believe God gave to me were, “It’s how others SEE YOU.”

Let me try and explain with this example. As a parent of a non-verbal son with autism I long for others to see Luke as an individual and not just someone who is “special.” I want them to see beyond his different stimming movements and sounds. When we go in the community I want folks to see him as an individual -- someone who is created in God’s image and deserves respect -- and not just his autism.

Don’t we all want to be seen as the unique people God created us to be? To be given the benefit of the doubt and to be loved and respected? Isn’t that what we all want for our children and loved ones?

As a white woman I am positive that I don’t know or understand the half, or (even a quarter of it) in terms of what people of color go through. But I do know that just as in racial hatred, our loves ones with disabilities can be judged and looked down on in an instant. 

I’m guilty of this too and it grieves my heart. More importantly, it grieves the Lord. In Luke 11: 37-53, Jesus is invited by a Pharisee to eat with him. What does this religious leader do right off? He judges Jesus because He did not do the ceremonial cleaning before eating. The Pharisees judge others by what they see on the outside.

Sound familiar as people with different skin colors or differing abilities are judged in a nanosecond?

Right off Jesus knew the Pharisees thoughts and he laid into him saying he washed the outside but inside he and the other Pharisees were wicked.

Jesus rebuke continues, and according to Luke 11:52 He says to them, “You’re hopeless, you religion scholars! You took the key of knowledge, but instead of unlocking the doors, you locked them. You won’t go in yourself and won’t let anyone else in either.” (MSG)

That shatters me because how often do we as a church stop those who are different from entering into a relationship with Him or from entering our fellowship communities?

Much better news comes in Luke 12 after Jesus leaves the Pharisees and starts talking to his disciples and a crowd of thousands.

Again, in Luke 12: 4-7
“I’m speaking to you as dear friends. Don’t be bluffed into silence or insincerity of religious bullies. True, they can kill you, but then what can they do? There is nothing they can do to your soul, your core being. Save your fear for God, who holds your entire life—body and soul—in his hands. What’s the price of two or three pet canaries? Some loose change, right? But God never overlooks a single one. And he pays even greater attention to you, down to the last detail—even numbering the hairs on your head! So don’t be intimidated by all this bully talk. You’re worth more than a million canaries.” (MSG)
No one can do anything to harm our souls. God holds our entire life in his hands. God sees us and he knows how many hairs we have on our heads. He created so many beautiful people of all different types and abilities. We are all made in His image. He sent His one and only son to die on the cross for our sins and Jesus rose again conquering sin and death.

Thank the Lord that He made us, He sees us and He loves us. Because in this crazy world all those things are in short supply.

Prayer: Lord, help us to see each other as you see us and to love each other no matter what our race, age, ability level.  And continue to keep Your watchful eye on our first responders.
~ Deb Abbs

Monday, July 18, 2016

Being Still & (not) Knowing

Commit your way to the Lord;
trust in him, and he will act.
He will bring forth your vindication as the light,
and your right as the noonday.
Be still before the Lord, and wait patiently for him; [1
Ps 37:5–7

“Be still, and know that I am God.
I am exalted among the nations,
I am exalted in the earth!”
The Lord of hosts is with us;
the God of Jacob is our refuge. [Selah] [2]
 Ps 46:10–11

I am a person of many contradictions. During the blistering heat of a Georgia summer, I long for cool breezes from another season. Yet in that very same longed for season, I will dream of flip-flops and long, warm days. I long for rest and respite, but often become restless once fully immersed in it.

As much as I wanted to rest and repose this summer, it is the summer before my son begins high school. My mind simply will not rest. This week has been the Summer Bridge Program, which allows him to visit his new 2000+ student school for orientation daily. As the special needs school bus (you know the “short one”) pulls up in front of our home each morning and he climbs aboard, my soul cries out “Wait! I’m coming too!”

I want to crawl on that bus because they don’t know him. Sure they’ve said he is ready for small regular education classes, but they didn’t know him when the doctor’s said he’d never speak or read. Oh yeah, they can’t think of a reason why he won’t be able to manage the social setting, but I can’t fathom how he is going to manage the cafeteria each day. Because I know him.

I worked on a ministry staff with a very wise man who said to me once, “If you knew what I know you’d never smile again.” That is how I feel about managing my child’s IEP sometimes. It is a delicate balancing act. Anything new is terrifying. During the first two weeks at any new school, we usually crash and burn. My phone hasn’t left my side during this orientation because I am expecting the call. All because I know things. [insert deep, exhausted sigh here]

I finally collapsed in my existential fit, sprawled in my hammock and stared at the trees in my backyard today. “Why do I keep thinking about all the things I know about him Lord? Why can’t I let him try and grow up and have faith that you are on that bus and in those halls? Why don’t I believe that you are in that cafeteria?”

From the same depths of my soul that had been crying to ride on the bus, I heard a new voice saying, “Be still and know” about me.”

I focus a lot on the potential result of any given scenario. Parents of special needs children learn to be proactive. After twelve years of managing this IEP, I am prolifically proactive. Always six steps ahead of everyone else in the room, watching for each possible downside to every choice we make, and then promptly solving that problem. Then doing it again.

When I was told last spring that he could “handle” the regular education setting (after all, he had been on Honor Roll the entire semester) I began to unravel. I think it is because it begins a very different story from the one I have known. I have felt unsettled ever since.

God would have me stop knowing in my own certainty and try a different approach. It goes something like this:
  • Be still and remember who I am. Think about knowing me, and all I have brought you through. I was at the doctor’s appointments with you. I have walked into IEP meeting with you when you thought you were alone. (Ps. 46:10)
  • Take refuge in me. Be still and let me fight for you. (Exodus 14:14)
  • Stay still and be patient as I act. Your son is older now and must learn many ways to advocate for himself on his own. You must learn to be more still and let me be by his side as I have been by yours, and you by his. I am with him.
  • Trust me. I will act. (Ps. 37.5)

Honestly, I don’t know how I am going to make the shift. I’ve been doing this a long time the way I’ve been doing it. And I think God gifted me to do it that way when I needed to. But my almost 16-year-old boy speaks, reads, writes and stays on Honor Roll at school. It’s time to be still and know.

Looks like I’ll be spending lots of time in the hammock.

Father God,
    Thank you for the reminder to be still and remember your greatness. Help me adjust and grow along with my child's needs. I'll need you to be ever near me as I learn to wait for you and to trust you to act. I take refuge in you, my Rock and Redeemer. Amen.

- Vangie Rodenbeck

[1] The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Ps 37:5–7.
[2] The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Ps 46:10–11.