The answer should be yes. Not "how can I get my loved one help?"

Tag Archives: Lupus

I now pronounce sentence. 72 hours and a prayer

The appeal to Medicaid to further fund services has been denied.

As a result, I will be picking up David from the facility on Monday.  We then come home to begin a new chapter in our lives as a family.

We had an IEP meeting for him this morning.

Short term he will be homebound working on school materials supplied by the district. Long term we are applying to a day program for him.

During the IEP meeting we got a look into the life of David.

  1. Minimum five hours a week of intensive group therapy.
  2. Weekly individual therapy.
  3. Weekly family therapy.
  4. He is in a self-contained classroom for all but two classes. Those two classes are Art and Physical Education.
  5. His therapist makes regularly daily contact throughout each day to ensure that David knows she is checking on how he is doing.
  6. He has 24×7 staff support of some kind.
  7. Staff has to keep eyes on him at all times.
  8. He needs constant redirects to keep on task.

I can’t recreate this environment in my home.  It just isn’t possible.  We asked for 45 days to transition him home.  We were given 72 hours.

This is a recipe for disaster.  I pray that I am wrong, but I don’t think that I am.  I give us 2 weeks before all hell breaks loose in our home.  It might not take that long.

Please, pray for our family.  brokenI am thankful for this book “Get Your Joy Back”  it has helped me this past week as we have struggled to put some kind of plan in place to support David during this period.  By supporting David, our whole family will be supported as well.

 

Today I ask for strength in getting through this period successfully.  Honestly, I have nothing left but prayer and Hope.

Lord, I give our lives over to you.  That we may see what your plan for our son is, and through him your plan for us.  Please forgive me my short comings in the coming weeks as I rally against the system that has abandoned our son and our family.  Through your strength and goodness, we will survive. Through these trying times in our life, please lift us in your heavenly embrace.  So that my cup may runneth over, rather than act as a sieve.  Amen.

Annual Christmas Letter and Appeal

Merry Christmas everyone！Greetings friends and readers.

It is with all the joy in my heart that I wish each of you a joyful holiday.  One filled with acceptance of the differences we see in others.  One where our children know how much love we feel in our hearts for them.

It is tradition in our home to open gifts Christmas Eve at home, and then on Christmas Day with the cousins and Santa.  Tonight, I reflected on Christmas’s past.

I remember a Christmas when we got K one of those play kitchens.  It took me most of the night to put the thing together, but the joy on her face when she saw it was worth every slip of the screwdriver.

To when Teletubbies were the rage and we got C the purple one.  (After all this time, still not sure of the names on them even after 17 years.)

To the joy that T display’s every time we get him a book for Christmas.  The kid loves to read.

During the early years, E spent the holiday with her mom so we often did Christmas in the summer when she came to visit.

David’s joy has always been any electronic gizmo that lights up and makes noise.  The joy that was reflected on his face when he would score a coup and steal the gizmo that one of his siblings received was both maddening and joyful.  Does that make sense?

Even with the differences in our family, the personality conflicts, the constant verbal abuse and terror visited by David upon his siblings, they are still loving toward him.  Asking how he is doing.  Worrying about what his behaviors are doing to him and those who care for him.

I guess that what I am saying is, if we embrace that which makes each of us different, greet each other with more compassion, and use kind words instead of hatred the world would be a better place.  Wouldn’t it?  We can forgive the many harsh things that David has done to our family.  Forgiving isn’t forgetting.

As kids enter dream land, wondering what Santa will bring, I ask each of you to consider one thing.

How can you make a difference in the life of another human being?  You don’t have to give money.  It could be something simple such as paying for the meal that someone is enjoying.  Give a cup of coffee to the person behind you in line.  Share a couple of dollars with a charity.

I have lofty goals of my own for the new year.  As we get closer to that time, I will share them with you.  Above all else, it takes a team to make a difference.  In the lives of children with mental illness, less focus is given than we ought to give.  The state of mental health services for children is a travesty in many parts of our world.  How can I affect change?  How can you affect change?

As I close this letter, know that in our world, there exists unmeasurable amounts of compassion.  We just need to ensure that everyone has the opportunity to experience that compassion.  To the staff that have worked with David and our family in the past, those who are working with him now, and those we have yet to meet, may you have a blessed Christmas.  No that we appreciate everything that you are trying to do for our family, and most especially David.

My appeal.  Yes, I have an appeal.  Show compassion for your fellow man.  Whether or not people celebrate Christmas, it is still Christmas everywhere.

I leave you with this video.  I didn’t create it, I don’t know the creator, but am struck by the message that is delivered.  Are there homeless people who take advantage?  Yes, I am sure that there are.   But, what if….

Merry Christmas

Carl Young

Off Close Watch

David is off close watch.

DSCF2182_v1They moved him off the lower level of the residence, and to the main floor.  This allows them to keep a closer eye on him.

I miss the little guy.

I advised staff that we need to ensure that we are looking at his meds.  While not a cure, they do help him.  But they can only help if they are appropriately used, up to and including changing his prescriptions.  Other than minor adjustments, David hasn’t undergone a full scale med wash in almost a year.  Whereas before his current placement he underwent a med wash about every 6 to 8 weeks.

I hope that they hear me.