Thursday, September 3, 2015

Don't You DARE Have Fun!

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Sing joyfully to the Lord, you righteous;
    it is fitting for the upright to praise him.
Praise the Lord with the harp;
    make music to him on the ten-stringed lyre.
Sing to him a new song;
    play skillfully, and shout for joy.
For the word of the Lord is right and true;
    he is faithful in all he does.
The Lord loves righteousness and justice;
    the earth is full of his unfailing love.
By the word of the Lord the heavens were made,
    their starry host by the breath of his mouth.
He gathers the waters of the sea into jars;
    he puts the deep into storehouses.
Let all the earth fear the Lord;
    let all the people of the world revere him.
For he spoke, and it came to be;
    he commanded, and it stood firm.
Psalm 33: 1-9 NIV

Sometimes, as parents of children with disabilities and health concerns, we feel like we shouldn't have fun.  As much as we WANT to have fun, we feel as though we would look selfish or calloused if the world saw us having fun when the world knows the condition of our children.
When my daughter had cancer,  we stopped going to church and we stopped getting together with a lot of people, and we stopped traveling to visit my family who lived 4 hours away.  We did all of those things because of the risk of germs that could have dramatically impacted our daughter's health while she was on chemotherapy.
However, we DID take a weekend away together as husband and wife, and I DID take a girls weekend to go scrapbook and relax.  We even went to a "black tie optional" dinner as a fundraiser for the American Family Children's Hospital while she was still on chemo.   
Why did we do this?
Because we had hope in the Lord, and we trusted that our future was in His hands.  

Look at the beginning of Psalm 33...we are told to sing JOYFULLY for the Lord, and PRAISE Him.  We aren't told to do it only during good times.  We are told to do it when everyone is healthy and finances are good and times are really swell.  No, we are told to sing joyfully and praise Him because:
HE IS RIGHT AND TRUE AND FAITHFUL IN ALL HE DOES.
That's not just in the good times.

 Praise be to the Lord,
    for he showed me the wonders of his love
    when I was in a city under siege.
Psalm 31:21 NIV 

Yes, we felt like our city was under siege when our daughter had cancer.   Yes, we have felt alone and desperate in times when we are bombarded with medical issues, or behavioral issues.  But, praise be to the Lord, He has shown us His love EVERY DAY...and for that we will praise Him.  
We will praise Him and smile even when there is pain in our life.  
We will praise Him and rejoice, even when the world might look at us and say, "Look at what they are doing at a time like THIS."
We will praise Him because He has a future-world for us that makes this world seem like seem as important as dust on a scale...
We will praise Him for what He has done, is doing, and will do tomorrow... 
So, if you are concerned today because you have fun plans in the future and you're afraid of what people may THINK of you for rejoicing and having fun when your child has special needs (gosh, we should be wearing our black robes of mourning and spending our days lamenting with the gnashing of teeth and shaking of our fists, right?)...you have been directed by God, the guy in charge of it ALL, to REJOICE, SING AND DANCE. 

It is our responsibility to show His glory through our joy in all circumstances. 

I can't think of a better way to close this entry than in the words of the apostle Paul: 

 Rejoice in the Lord always. I will say it again: Rejoice!
Philippians 4:4 NIV (my emphasis added)... 

Pray:  Heavenly Father, thank you for ALWAYS being with us, even in our hardest times; when our city is under siege.  Father, I pray that you help me remember that I am to REJOICE at all times; and that is nothing to be ashamed of, nor to fear.  My concern lies not in the possible negative response of a few; rather, in the glory that my joy gives to you!  You are capable of anything and everything; and yet you care for ME!  I know that is reason enough to sing, dance, applaud, and rejoice every chance that I get.  Amen.



 

Wednesday, September 2, 2015

2 Decades and Counting

Photo credit: pixabay.com
Wherever you go, I will go; wherever you live, I will live. Your people will be my people, and your God will be my God. 
Ruth 1:16 (NLT)

The beautiful experience of being the parent of a child with an autism diagnosis was initiated by another beautiful experience, marriage to my husband Isaiah.  Life on the spectrum road often threatens to eclipse this most fundamental of relationships.  Today, we celebrate 20 years of marriage.  It's been a story, and I can only imagine the book others will get to read, describing the journey, marked by grace, and God's gentle hand, teaching us the ways of love and mercy and forgiveness as we demonstrate our love for Him by figuring out how to love each other.  They say that you can tell a tree by its fruit.  I don't have to look very far.  The beautiful children we have, the obvious mark of God on all their lives, the tremendous healing impact of parenting Jaedon on my life, is the fruit of a union that is God-ordained.  What a legacy!

If you are married, I pray you see God's hand, and hear His encouragement to continue loving and serving each other as you write the story God is authoring through you.
Isaiah, Jaedon, 2014

The Clarke 5, 2009
Lord,  I pray that since we are surrounded by such a great cloud of witnesses, we will throw off everything that hinders and the sin that so easily entangles. I pray we will run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. (Heb. 12:1-2).  I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give us  the Spirit of wisdom and revelation, so that we may know him better. I pray that the eyes of our hearts may be enlightened in order that we may know the hope to which he has called us, the riches of his glorious inheritance in his holy people, and his incomparably great power for us who believe. (Eph. 1: 17-19)

Faith, Isaiah, 1994 (BK - Before Kids)

Tuesday, September 1, 2015

Things Are Not Always As They Seem.




Psalm 143:8 (NLT)   Let me hear of your unfailing love each morning, for I am trusting you. Show me where to walk, for I give myself to you.

Within a year of my son being diagnosed with Duchene muscular dystrophy we moved from Alaska to Washington. We settled into our new home and with the new school year quickly approaching I was full of anxiety.

We were still in a state of shock, over his diagnosis, trying to understanding what it all meant. We didn’t understand the full extent of his disability. At this point he didn’t look any different than any other boy his age, so how were others going to understand his limitations.

Summer was coming to an end.  I knew I needed to get him registered for the upcoming year. It took me a few times driving past the school before I finally got brave enough to stop and go inside. The school was old and in an older part of town. I felt uneasy as I walked up to the building. I gave myself a pep talk, telling myself it would be okay.

As I  walked in the secretary looked up at me and smiled.  I explained we were new to the area and asked about enrollment. She gave me the paper work and answered a few of my questions and then the principal walked into the room. I asked her if I could talk with her. I explained to her, the best I could about his diagnosis and shared some of my concerns.  She listened quietly then said she had the perfect teacher for Ryan, and asked if I could come back the following week to meet the teacher.

I felt a little better until I showed up the following week to meet the teacher.  As the principal and I entered the room the teacher had her back to us, yet right away I couldn’t help but notice how tiny she was. She was about 5 ft tall and weighed at the most 100 lbs. When she turned around she was not what I was expecting. She was a much older women that looked like she had lived a hard life.

Planting a smile on my face, I made polite conversation, but my mind was already made up. This was NOT the teacher for Ryan. As she talked I was already trying to figure out how I could tell the principal this was not going to work. Ryan would not feel comfortable with her. 

I didn’t  say anything that day, but instead went home, called my mom and cried. I told her about the teacher and all the reasons why this was not a good thing. My mom listened and then encouraged me to give the teacher a chance. Ryan had not even met her.  I resigned to give it a try only after I exhausted all other possibilities. Every other option I checked into the doors seemed to close, yet the door to this school remained wide open.  
  
To make a long story short, that teacher who I was so worried about became Ryan’s biggest advocate. Not only did she take care of him in 1st grade but her door was always open.

As Ryan’s physical abilities declined she helped me to fight for what Ryan needed all through elementary school.  Ryan is my youngest of four children, yet he was my first one with special needs. I had no idea what an IEP was, a 504 plan was, or anything else for that matter. She knew all the lingo and how to ask for the services he qualified for.  She not only advocated for Ryan , she taught he how to.  I was so thankful for this teacher. 

As it turned out she had battled kidney disease for years. In fact the year after Ryan was in her class she started dialysis. She understood hidden disability. She understood struggles and how to persevere in spite of circumstance.

She was THE PERFECT teacher for Ryan. God knew where Ryan needed to be for that first year of school. 

I am sad and embarrassed to admit how quickly I judged her, based on how she looked. Without even knowing her I had my mind made up.

It breaks my heart as I  now see people doing this to my son. They judge him with preconceived ideas because he is in a wheelchair.

Not only did I judge her, I judged the school based on the building and the neighborhood. Yet the staff at that school could not have been more kind and understanding, not only with Ryan but with me, an over anxious mom.  I am so thankful that God saw the bigger picture and didn’t allow me to get my way. He knew what was best!


That first day of grade school is a distant memory. This year Ryan will be a senior in high school.  While our school experiences have changed numerous times since first grade here are some things that I found to be helpful in easing into each new school year:  

1.  Talk with the teacher a few weeks before school starts.  Give basic information that will help them to understand your child’s needs. Keep it simple  adding more information as needed.

2.  Meet with ALL staff who might come in contact with your child at school.  We learned the hard way, after an aid made Ryan walk around the entire building because she thought he was messing around.  Be sure they all have an understanding of the disability.

3.  If possible, bring in an expert to talk with the staff. We brought an expert in from the Muscular Dystrophy Association to help us. We have found, teachers seem to listen more closely to another professional than a parent (sad but true). We also had the MDA staff member talk with my son's class early on in the year to help them to understand and answer questions they might have.

 4.  Be a welcomed presence in the school. Volunteered as much as you can. It helps to gain a positive relationship with the staff.  They become more willing to hear your concerns.


Dear Heaven Father,
The start of a new school year sometimes brings moments anxiety.  Help us to trust you to guide and direct us every step of the way. Even when things don't  look the way we think they should, thank you that we can trust you. You see the bigger picture and it is not always as we see it.  

In Jesus name,
Amen



Photo Credit- Donna Mckenzie

Monday, August 31, 2015

I'm Overwhelmed!

When you go through deep waters,
    I will be with you.
When you go through rivers of difficulty,
    you will not drown.
When you walk through the fire of oppression,
    you will not be burned up;
    the flames will not consume you" (Isaiah 43:2, NLT)



I wish I was up to my neck in the crazy busyness of life.

Because that would be a reprieve. A respite.

Truthfully right now I feel absolutely and completely overwhelmed. I’m a human pinball bouncing around and simply reacting from moment to moment.  I don’t have time to think, process, or even plan. I’m just hoping to hang on until this season passes.

I’m a husband, a special needs dad, a ministry leader, a boss, an advocate, a fundraiser, a son, a writer, a speaker, and a volunteer. In my spare time I am battling some serious and time-consuming personal health issues involving doctors, therapies, treatments, and tests.

Next month my son with profound special needs turns 18 which involves conservatorship, court, and legal documents.

If stress were a jackpot, my life would be all cherries at the moment. My responsibilities are stacked up and my emotions are jacked up.

Torn, worn, weary, and overwhelmed.

You too huh?

Just when you think your life cannot get more hectic and more unbalanced, it does.

As Norm from the old TV show Cheers once said, “It’s a dog-eat-dog world and I’m wearing milk-bone underwear.”

In John 16:33 Jesus said, “In this world you will have trouble, but remember, I have overcome the world.” I get so wrapped up and consumed in fighting the trouble, that I forget the promise of the last half of the verse.

In desperation I find myself collapsing in my bed and proclaiming, “God I am overwhelmed!”

And in the quiet and stillness of the brief moment, I sense His Spirit convicting me of the real problem.

The real problem is that I’m not overwhelmed enough.

I’m not overwhelmed by God’s grace. I’m not overwhelmed by his promises. I’m not overwhelmed by his presence. I’m not overwhelmed by his assurances of provision. I’m not overwhelmed by his love. I’m not overwhelmed by his commitment to me.

I am absolutely overwhelmed with all the wrong things. I’m overwhelmed by the difficulties and challenges of this world. I’m overwhelmed by the struggles of living in a fallen world. I’m overwhelmed by stress and anxiousness.

But I’m not overwhelmed enough by the bigness of God.

God is bigger than any giant in my life, and in your life. And if we were simply overwhelmed by that notion, then the giants in our life would seem so much smaller.

Our giants would appear as if they were ants.

“Come to me all of you who are tired and weary, and I will give you rest,” Jesus says.
“Greater is He who is in you than anything in this world,” the scriptures promise us.

When we find ourselves just trying to keep our heads above the water, we need to let our awe and worship of God overwhelm us again.

We need to remember the last part of John 16:33 when Jesus declares “I have overcome the world.”

We aren’t overwhelmed enough. We need to remind ourselves that the tomb is still empty and He still rolls stones away in our lives.

Whether we are in a doctor's office, the school pick-up line, our job, or our home - we need to declare wherever we are to be holy ground, take off our shoes, stare at our own burning bush and remember the God who said "I AM WHO I AM."

We will get through this. Not because of our own strength, and not because of who we are. But because of his might, who He is, and what He did for you and me.


Let Him overwhelm you today. Let Him wrap His arm around you and soak in His presence today. Allow yourself to be overwhelmed.

PRAY: "Father I ask you today to overwhelm me with your love and with your presence. Father as I sit here in the stillness of the moment, reveal yourself to me in a very real way."


Saturday, August 29, 2015

"Are You Serious?" Awards - Volume LXIII: The Private Schools Edition


As with many previous posts, I will start today's story by cautioning you that we only know one side of a multi-faceted issue.  Having a sister who is the principal of a private school, I know that while we parents can run to the media with our complaints, schools of every kind are held to a different standard, frequently unable to defend themselves publicly.

I would also remind you that I am neither an attorney nor a licensed special education advocate, so my facts are gleaned from other resources that I have found to be reliable throughout my years as a parent of unique kids and as a leader of special needs parents.

That being said, today's "winners" offer a unique opportunity for us to examine the law regarding complex kids and private schools.  This is especially helpful considering the wave of popularity with School Choice.

This week finds us in the State of Texas where the parents of two girls with "invisible disabilities," that include things like ADHD, sensory processing challenges, and anxiety disorder, are suing their daughters' Catholic school.  According to the parents, several attempts were made to have their daughters' school make simple accommodations for the girls to no avail.  These accommodations included extra time on homework, written instructions for assignments, a "safe room" or quiet space for times of sensory overload, and a computer for the younger daughter when writing was difficult.

Despite multiple meetings with authorities on all levels of the school (teacher, principal, pastor, diocese) the parents claim that these requested accommodations were largely ignored.  As a result, the two girls were failing school.

Are You SERIOUS?!

Image courtesy of stockyimages via 123rf.com
Having had two of my children receive similar accommodations in their public schools, I can tell you that for them, these were fairly easy adjustments that yielded huge results in the classroom.  I can also tell you that often, when our children have these sorts of "invisible" diagnoses, we parents are not taken very seriously, sometimes being erroneously accused of being a "bad" or permissive parent.

While we don't know the other side of the story or the resources available to the Texas school, it breaks my heart to see supposedly Christian establishments treating kids with diagnoses worse than the secular world.  On the flip side, I do know from my sister's experience, that sometimes private schools will openly confess to parents that they are not equipped to give challenged children the extra measure of care that they need.  

So, the big question in this story is, Did this Catholic school break the law?  Aren't private schools exempt from IDEA 2004 and granting IEPs?  The answer is complex and nuanced.  Yes, private schools ARE exempt from IDEA 2004. These schools are not required to offer IEPs for special students along with things such as occupational or speech therapy.  On the other hand, these schools ARE bound by Section 504 of the Americans with Disabilities Act (ADA).  This prohibits discrimination against students with special needs and may require the school to make some modifications for the student under the law.

It will be interesting to see the outcome of this law suit.  Situations like this one are never pretty.  It seems that no one comes out a winner in the end.  Feelings are hurt and disdain seems to increase.  One would hope for better between those who call themselves followers of Jesus.  Ultimately, it seems the law suit will expose which side is merely pretending to follow Christ in the end.

~ Barb Dittrich

RECOMMENDED RESOURCE:  CLC Network (Christian Learning Center) - Working with schools, churches, & families to create inclusive communities for people at all levels of ability & disability.

REFERENCES:

Friday, August 28, 2015

Life in the Desert Place


Photo Credit: Pixabay.com
You intended to harm me, but God intended it all for good. He brought me to this position so I could save the lives of many people. Gen 50: 20 (NLT)

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.Rom. 8:28 (NLT) 

Our Eyes Lie

I can’t see how this is good at all!  My 14 year old daughter looked at me with exasperation and some anger, in the midst of desperate tears.  She had been processing coming of age anxieties for a few months, and had become impatient with the depth and extremity of her anxious thoughts, along with the apparent temporary nature of the calm resolutions she had arrived at.  As I walk beside her through this necessary period, I'm excited about the process that she’s going through.  While I pray fervently that she does not get swept away by the emotional tsunamis when they hit, I’m overwhelmed by her tenacity and desire to see God in this process.  The intensity of her experiences has made her desperate for God.

See What He Sees

She can't see the purpose of her pain.  The complexity of the challenge and the struggle to overcome feels unnecessary.  Most days, my heart breaks.  Pain is pain.  It's awful. But, after more than a few such experiences myself (anxiety is contagious in our home, experienced by the neuro-typical as well as the rest of us) my perspective is different from hers  She can’t see what I see.  She can’t see the way she’s growing, the muscles she’s developing, the intimacy she’s gaining with God.  I can.  As I watch as the pieces of a masterpiece come together under God’s watchful care, I wonder with excitement and some trepidation, what is He preparing her for?


Growth in the Desert

In my last devotional, I mentioned that faith can die in the desert seasons.  But, faith can grow in the desert seasons.  Actually, incredible growth can happen in the desert seasons.  The beauty seen during times of peace and rest is usually a reflection of shaping that happens in the desert, as a result of our interactions with thorns, snakes and other desert creatures.  I find it interesting that Jesus was led into the desert by the Holy Spirit to be tested by the devil (Luke 4, Matt. 4).  The gospel of Mark’s version of that story says Jesus was ‘compelled’ by the Holy Spirit (Mark 1:12, NLT).  Could God be directing me into these shadowy times for my own benefit?  And in preparation? According to the scriptures, YES!  As a mommy, listening to her daughter, I can say a resounding, YES! This is GOOD! 

I remember being in labor with my son and beating back panic in the face of relentless labor pains every 90 seconds, by thinking about the following verse: Do I bring to the moment of birth and not give delivery?” says the Lord. (Is. 66:9, NIV)  No, He Does Not! God is birthing something in us during these darker moments and thankfully, HE is doing the birthing.  Our job is the allowing.  And just like with Joseph (Gen. 50:20), the things He will birth, will be for good, and for the rescue of many others. 


Good Father, Thank You that You are the GOOD Father, patiently creating a masterpiece from our lives, orchestrating everything for our good, as we yield to You.  Please help us to notice Your presence in every dark moment today.  Fill our hearts with faith for the good that You are working, for the fruit you are producing, from our lives while we sojourn in these shadowy places. Amen.