Saturday, August 6, 2011

The Ups and Downs

I started a post last night talking about how having a child with a disability is such a rollercoaster.  Only the day before I was laughing and singing and posting about praising the Lord.  Then yesterday my world came crashing down.  Thats what being a parent of child with a disability is like.  A rollercoaster.  Crazy happy hopeful days and long stressful defeating days.  I was probably having the hardest day yet in this journey with Jacob.  The worst part about it was that I didn't know if it was even ok for me to be feeling sad and hurt and angry so that made me feel guilty.  We officially lost the battle with the insurance company yesterday.  Even with the neurologist on our side and her nurse looking into our coverage all day, the insurance finally said that they just weren't going to cover the tests.  Not only that, but the therapies we need won't be covered either.  In addition, I found out that $1200 per month only covers 10 hours a week of ABA therapy and most kids need 20-30 hours if they aren't in a school program and thats only 1 type of therapy they need.  They also need speech, occupational, special diets and sometimes medications.  Lastly, Jacob got sick again.  he had fever and the entire night his nose was stopped up and instead of finally realizing he needed to breath out of his mouth he would hold his breath, then gasp for air and then cry and cry.  This went on for hours.  I was really torn down.  I couldn't imagine anything worse than knowing you have a sick child and not being able to take care of them or give them what they need.  I am and was heartbroken.  But then I got a call from a lady who is on the board of a diabetes foundation.  She was telling me that she knew someone within the autism speaks houston chapter and gave me some info.  She told me that she knows how hard this is for me.  She said she gets calls from people who have lost their insurance and have no insulin for their children.  If these kids don't get insulin daily....they die.  Woah.  Here I am thinking nothing could be worse than my situation and I hear about these parents who now have to go to the emergency room every single day to get their kids insulin to keep them alive.  She then said that there were parents who chose to give their kids to the state just to keep them alive.  My heart is breaking for these people.  And while I won't dismiss the seriousness of my situation and I am going to allow myself bad days, I can't help but to see God giving me the proper perspective right now.  I know how hard this is for me, so I am only feeling a fraction of the difficulty of those parents.  So after I hung up I deleted my post that was a huge pitty party and sob story and just prayed. 
    God, please keep giving me the right perspective on this.  Help me fight this and help me give other parents a voice.  One way or another I need to make a difference.  Help me to make a difference in the world of autism and ultimately for your kingdom. Amen. 

After that I looked up on the autism speaks web site and found info on a walk to raise money for research going on in October in Houston.  I wanna do it.  I wanna raise money.  I don't want to just figure out how to get help for Jakey, I want to help every kid with this terrible diagnosis.  So now I need to pray for the right people to help me raise some money for this event.  They gave ideas such as a car wash, dinner, or even a lemonade stand to raise money for the walk.  I am already overwhelmed with everything, so I think I may do something small like a car wash, there has to be people out there that would donate for this wonderful research.  I am overwhelmed by the hundreds of people that have already viewed my blog and emailed me and what that tells me is that people are interested in autism.  It affects millions of babies.  It may already affect you or a loved one.  So I am praying for answers to what my role will be in this.  As far as practical advise for parents with kids with autism....I have decided to start a medical journal.  Many of you probably already have.  I want to take Jacobs temp and write his syptoms every day.  As I go through therapies and treatments I will continue to blog what helps us, although I know each child is different and needs different treatments.  I am still considering Doctor Goldberg at UCLA.  If anyone has more info on him I would greatly appreciate it.

1 comment:

  1. Now THIS is the "Allison-the-Advocate" I knew you are! God used Moses to speak for many, and he had a speech impediment; how much more you are going to be able to do since He has blessed you with inner and outer beauty, intelligence, and wonderful communication skills! Did you need a purpose? A ministry? You've got one! May God continue to bless you with wisdom, strength, grace, and peace. I love you!