Tuesday, September 13, 2011

Still No Answers

I did not notify anyone of the last post.  I was too distraught and maybe a little ashamed that I posted it.  I'm still stressed beyond my human limits but felt that I needed to offer an explanation to those of you who have been praying like crazy for me.  And I know you have been praying...I have felt it.  Our saga is not over.  At this point not too much has changed.  I will tell you what I know so far and share with you my only morsel of good news. 

This past month or two has been so hard.  He started falling apart after we were forced to move in a very stressful and scary situation back in June.  I thought coming back to this house would make him more at ease but I was wrong.  So yesterday after having a very hard weekend and functioning (or not) on very little sleep I had decided to make him a ward of the state so that I could get him into residential treatment.  This was a very gut wrenching decision to make but I fear for the other children and I'm left with little choice.  No one will help us any other way.

I got on email and the phone Monday morning begging for help and searching for answers.  I want him out of my house as soon as possible.  That was my only thought and mission.  My family can not handle the stress much longer.  I turned to a friend of mine all the way in Oregon who also has an autistic son.  I have to keep reminding myself that every case of autism is different and that some are worse and some not as bad.  Joseph's is "complex" and "unique".  That's just what every mother wants to see on report after report. 

I have followed all the directions and rules in getting him the help he needs.  I was told to seek this therapy and that therapy.  To explore all avenues first.  We had in-home therapy.  We had cognitive behavioral therapy.  We had occupational therapy....speech therapy....physical therapy.  We have tried medications for sleep, ADHD, bi-polar and anxiety.  I have done tons of sensory therapies and changed our family life and our home to accommodate Joseph.  Nothing heroic here...any mother would do this.  However, at some point, you want to see a pay-off.  There has been none.  We are at square one....right where we were 3 years ago.  Forget the fact that I have 2 doctors that have recommended residential treatment.  That, apparently, is not enough.  Because once you follow all the rules of Nebraska you THEN have to follow a totally different guideline per Nebraska insurance! 

I did find out one helpful piece of information.  I was told that if we bring him back to CAPS I do not have to go get him until I feel he is not a danger to himself or my family.  I know our insurance allows for a 30 day stay.  They always send him home after 3 days.  It won't happen next time.  And if I refuse to go get him then the hospital will order him to a residential center.  This is my understanding.  I could be wrong.  It would not surprise me.

After a horrific day of mommy meltdowns and tears and hoping for a day of recovery in a quiet home, the school called first thing this morning to tell me that Joseph was vomiting and I had to go get him and bring him home.  I figure it is too soon for another migraine so it is either a) motion sickness from the bus or b) he is doing it on purpose to come home.  Doesn't matter.  I had to go get him.  And he is NOT sick!  He is now bouncing off the walls, demanding food, watching loud cartoons....having a great time.  If I get another letter from the truancy office this year I will be giving them a piece of my mind loaded with pent up angry energy.  BEWARE MR. TRUANT OFFICER!

Tonight we meet with his doctor and I will demand a set of medications that work.  And if they don't within a few days I will be back up there again....and again....and again.  They can put up with a very loud and angry mother day after day or they can hospitalize him, monitor him and get the medications right once and for all!  And so our life continues to spiral out of control, our property damaged, our children threatened, our house in chaos and in the hands of a very stressed out, tired, and angry mom.  So for those that have been praying, please continue to pray.  This is not nearly over.

6 comments:

  1. OH my, I thought that might be what it was when I was praying for you. Hugs, my sister.

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  2. My son is a 9 year old HFA. I often think of others who are dealing with so much more than I. My heart is absolutely broken for you. No judging here. No mother should have to choose between personally caring for her special needs child and protecting her other children. I know mom-guilt and it's a vicious and unfair thing. Even when you know you don't have any real choice, it still stings. God bless you.

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  3. Melissa,

    I am so sorry. I am praying for you. It is hard to make decisions like this because you need to protect yourself and your family but at the same time, you love your special needs child and want so much to help them. Wish i was closer so I could help you.

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  4. Thank you, Patti. Just hearing the word "sister" makes me feel as if I am NOT carrying this cross alone.

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  5. Luna.....perfect words from another hurting mother! Thank you! It is a vicious and unfair thing and yet Our Lord has asked that I suffer this while on earth. I don't understand it. Yes, I want to scream up to heaven "WHY ME?" (actually, I do that sometimes!) but I also know I have to try to get into survival mode and just move forward. We are working hard now to get this resolved. The day he leaves our home will be the one of the worst days of my life. Thank you again for your words.

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  6. Lisa,
    You know too well, my dear. God has chosen us for this most difficult cross in life. I wish we were closer to help each other.

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