Saturday, January 28, 2012

"What You Did For The Least of These, You Did For ME"

Autism in God’s Economy: Parents of Children with Autism
“Disabled children are a blessing”.

It is something that we have all heard, even long before we were parents of disabled children. It is usually offered in a way that makes it seem like if you have a disabled child, you also have some indefinable, magical kind of ‘blessing’ where God waves his hand and, poof, you are blessed.

Once you become the parent of a disabled child, you begin to see what reality that ‘blessing’ brings, because in the beginning, in your early grief, you become grounded. All of the trivial distractions, petty rivalries, ego trips, vain ambitions and the nonsense of life suddenly become irrelevant. The junk in your life starts to fall away and it is replaced with importance placed upon things of true value.

With diagnosis comes a choice, to continue to self-serve, or to take a hard look at your life and begin making greater and greater sacrifices for the well being of your child. Because we love our children, very few of us would choose the former.

The blessing of having a child with autism can be found in Matthew 25. God eases you into falling in love with the Least of These, just like He is, so that when you receive diagnosis, the decision to serve them is automatic.

For our children’s welfare, parents in our community give up their careers, houses, retirement, health, relationships, free time, dreams, pride and a hundred other things that typical parents ‘get’ to hold on to. When we discuss the sacrifices that parents make, it is usually from the perspective that parents are losing out on the better life that should have been theirs.

Causing even more pain, some of these families will turn their lives upside down for children who may never ‘get better’ or live independent lives or even be able to acknowledge their parents at all. Some fathers will never be greeted with excitement by their child when they come home from work. Some mothers will never hear the words, “I love you, Mommy.”

However, Matthew 25:31-46 puts a whole new perspective on this phenomenon. What Jesus is telling his followers, just as He is about to leave them, is that whatever they sacrifice for the vulnerable in the world, they sacrifice for Him.

In the Bible, God asks believers to give just 10% of their income to Him. What do you think it means to God when a family who has lived all their lives in one place, tear up their roots and move across the country to a state that has better services for their disabled child?

Read Matthew 25:31-46
 again and pay particular attention to verses 35 and 36.

                For I was hungry, and you gave Me something to eat; I was thirsty
                and you gave Me something to drink;

We don’t just feed our children, many of us feed them gluten free, casein free, organic, hormone free, dye free, non-allergen, supplement enhanced diets that cost more money and take more effort than we would ever dream of spending on ourselves.

                I was a stranger, and you invited Me in;

Our children are strangers to us in so many ways, yet many of us spend a large amount of our time working vigorously to discover who they really are; to know them and to be known by them. The invitation is constantly being extended.

                …naked, and you clothed Me;

If the time and energy that we spend clothing and diapering our children were invested in the space program, we could have colonized Mars by now.

              I was sick, and you visited Me;

How many hours have you spent in doctor’s offices, conferences, training seminars, listening to lectures, reading books, and researching so that you could attend to your autistic child's health? How many nights have you stayed up trying to comfort your little one who could not sleep?

            I was in prison, and you came to Me.

How many times have you looked at your child who would not or could not respond to you and longed for him to be free enough to tell you what was going on inside his mind?  How many times have you held your little one and cried because you just missed him?

All the love, acts of service, sacrifices, and the other plates that you have let go of so that you could keep just this one spinning… He sees it all, and He says:

          “You did it to Me”

Remember that night that you were up cleaning your child in tears at 3 AM after eight consecutive months of broken sleep? That injury you sustained after trying to save your child many times from injuring himself that week? The times you ran like you’ve never ran before to save your child’s life despite your fatigue? That beloved thing that you gave up because you needed those resources for your child? He was right there, He saw it all, and as far as He is concerned, you did it all for Him.

When your child is diagnosed with autism, or with any disability, God puts you on a new path. It is rocky and dangerous and to journey on it is challenging. It humbles you and removes any pride that would have been yours had you not gotten the diagnosis. But Jesus said that He can only use broken people. People whose egos have melted away, people who have been brought to the end of themselves and had the love of the world’s economy squeezed out of them.  People who are dieing to themselves. It is only then that they can begin to see, and to love, God’s economy.

My children’s autism lays the ground work for God to be able to make me into a person who really knows Him and understands the world the way that He does.

The Corps has to strip away much of the man that showed up before they can build a Marine. As the parent of two children with autism, I am having the junk in my life stripped away by trying things based on the old paradigm, failing and having to go back and relearn the basics.

It has brought me back to a faith in God that I have not known in many years. A more child like faith that was less concerned with how I appeared and more concerned with just trying to learn from God and how to get it right. His ‘Right’, not the world’s right. It is a faith that is removing my independence and accomplishments and taking me back to the dependency and instability that I knew when I first met Jesus. As I am pushing forty, I am learning how little I really know, how weak I really am, and how much the smallest thing that I give to God really counts.

And God has used Andrew and Matthew to do it.

THAT is the blessing of the disabled child.

Sunday, January 1, 2012

Hopes and Dreams for 2012

Happy New Years!
We are very optimistic about the new year.  There are several things we hope and dream will take place for Andrew this year.
  1. That we are able to find the resources to get him a special needs bed so that he may be able to have a safe and secure environment for him to sleep.  This would allow him and myself to finally get some rest and get him back sleeping in his own bed.  It is unsafe for him to be up without supervision throughout the night.  This bed would allow him to remain in a secure environment when he wakes up without adding additional stimulation to cause him to not fall back asleep.  This bed is not just for us to be able to sleep but also to make sure that he is safe during the night.
  2. We are diligently trying to get him the intense therapy services that he needs.  All of the doctors and specialists have told us that these services are vital for his development during these young years.  I feel as though we have already lost so much time since he is already 4 years old.  However, it's not too late.  These services are not covered by our private insurance because they are habilitative services.  Our insurance does not have to provide services based on current laws passed by legislation mandating these services be covered, because they are a local government self-funded plan.  We are currently exploring other avenues to gain these services and are hopeful for the upcoming year.
  3. It would also help our family to have some respite care services.  Andrew requires total care just like a small baby would.  The problem is, he is 47lbs and it takes a toll on my back and shoulders caring for him.  He is completely incontinent and unable to dress himself at all.  He requires assistance getting into the vehicle, in and out of the bath tub, restraining to calm him from a tantrum or removing him from a situation, and etc.  I have pulled and strained muscles many times caring for Andrew.  It would be very helpful to have a break once in awhile from these duties and be able to go outside the home to take care of other necessary duties.  During the summer and school breaks these services would be most beneficial.  I currently try to schedule everything around school since he attends 3 days per week now. 
  4. We hope to be able to visit Johns Hopkins Medicine Institute of Genetic Medicine at the Rare Chromosomal Disorder Clinic in Baltimore, MD.  These are the experts in United States on chromosome disorders.  Our geneticist has recommended, Matthew-my other son, be tested as well because of his learning disabilities and behavior.  Then if any abnormality shows on him, have my daughter tested as well for her future children.  Our insurance has denied any of the genetics testing and we later found out that it was a fluke that Andrew's was covered.  This would be important to find out and what the odds would be for her to have any children with an abnormality as well.  These tests would let us know if this genetically came from one or both of us, or if Andrew's situation is isolated and occurred spontaneously during development in the womb.  So, there are two ways this abnormality could have happened.  It could be because I or my husband has a rearrangement (this usually doesn't have any physical or developmental effects on the person) which puts you at a greater risk of having a child with a chromosomal abnormality.  The other would be if Andrew's deletion is completely isolated and occurred spontaneously during in utero development.  This knowledge would be very helpful for the future of our family.  Also, this clinic would be able to possibly pinpoint the exact genes that are missing and the amount.  This information could tell us a lot of what effects this deletion is having on Andrew.  We could also gain knowledge in any possible effects on him as his body grows and develops.  This would be important for us to know so that we may catch something early enough to correct it without any devastating effects of catching something too late.  We might even be able to gain knowledge into his future development and what to expect.  This would allow us to plan and make any changes necessary for him to have the care that he would need.  During this visit they would also address any current issues and concerns.  Andrew would be referred to other specialists as needed and be given a treatment plan that would benefit him the most.  Andrew's current doctors are in uncharted territory with him and are having to use the 'wait and see what happens' and the 'let's try this to see if it works' approach.  This knowledge would also allow his current doctors to better care for him.  Visiting Johns Hopkins is our best hope in gaining more knowledge to help Andrew and our family.  Please pray that opportunities are made way to allow us to make this journey.
  5. Service Dog for Andrew.  I've been doing research on service dogs, and it seems that this could have a great benefit for Andrew.  This would provide him with security, more independence, and safety benefits. This dog would not only be a great companion for him, but would also help calm him during times of distress,  be able to detect seizures, help with his sleep issues, trained to stay with him at all times, and Andrew could be attached to the dog with a lead and not be able to wander away.  There are two problems to getting a service dog for Andrew.  One his father doesn't like the idea of having a large breed dog in the house.  However, the benefits for Andrew will just have to outweigh that.  The other is cost.  These dogs cost the same as a nice used car.  They are in the thousands.  I'm looking into resources on being able to get a dog for him in the future. 
There are other equipment and things we are looking into for Andrew as he is getting bigger.  Please pray for us as we continue on this journey with Andrew and that we are able to provide these needs for him and our family.  We are grateful for those that support us through prayer and encouragement.