Tuesday, June 14, 2016

When You Have to Call the Crisis Hotline


A long time ago, when I first started this blog, I promised myself this would be an honest, unvarnished look at life on the spectrum.  From time to time, I depart from that and post about other things, out of boredom or from lack of any serious material.

Well, now I have some serious material.  And it needs to be written about.

All children with ASD are different.  Some function quite well and have very high IQs.  These are the children that people picture when they think of "autism".  Some of them do not function well, socially or academically.  They have mild to severe behavioral problems, some of them have physical problems, and some of them, when they hit puberty, become almost unmanageable.

This is who my sweet boy, Logan, is.

I cannot describe to you the pain of watching a child who you remember as a baby with soft, curling hair, grow into a tween who cannot control meltdowns that become so violent your other children must hide in their own bedrooms.  I can't tell you the number of times I have cried while trying to stop my own son from hurting himself, the frustration of calling agency after agency and doctor after doctor, only to be told, No, we cannot help.  I've written about the isolation that dealing with this creates; what I have not written about is the complete and utter heartbreak of hearing your own son say "I love you", and in the next twenty minutes dissolve into unintelligible screaming because you had to say the word "no".  I have been shoved, pulled on, hit, kicked, and scratched.  I have been screamed at.  I have been threatened.  I have watched my own son try to slap his own eyes out of his head because he cannot control what is going on in his brain.  I have held him in my arms while he screamed "I hate you Mommy!" over and over until he started to cry, and I looked at him and said, "You can't make yourself stop, can you?" And he cried and said, "No."

It is heartbreaking to watch your own child's mind become his own worse enemy.

Yesterday, we had an incident, here at our home.  It involved a screaming fit of epic proportions.  It involved a threat to the safety of my son and other family members.  And my husband and I concluded that we needed to call the crisis hotline at our local MHMR.

The crisis hotline is supposed to be your last line of defense when you are dealing with a mental health emergency.  Pecan Valley MHMR is supposed to send someone to your house to assess the situation, and if the person in question is a danger to themselves or others, they are supposed to find a place for that person to go.

A woman came out to our house and she was very concerned for us and for my son.  She called two hospitals that said no, they could not take him. The third one said they would.  We bathed and fed him and my husband drove to this hospital. He waited more than two hours, only to be told, We cannot take a child like him who has this type of diagnosis.  

So he had to bring him back home.  Before he did that, he called the crisis hotline again. The person on the phone was completely unhelpful, she said, oh, yeah, someone with an intellectual disability is probably not going to get help, so you need to just "call around" or go to an ER.

This morning, I started making phone calls.  The original person that came out to the house called me back and said, "I'm sorry, but I'm really uneducated about all of this." and went on to tell me there was nothing she could do.  I called every single resource and phone number and contact I had accumulated over the years.  No one would help us.  I wanted to scream at all of them:  WHAT PART OF HE IS GOING TO HURT HIMSELF OR SOMEONE ELSE DO YOU NOT UNDERSTAND???????

I cannot describe the despair and utter darkness of feeling trapped, of knowing that your child is in dire need of medical attention, and having door after door shut in your face.  It leaves you in the darkest place, with the understanding that you are completely alone, that you have to fight this monster with the limited knowledge that you do have, knowing that something terrible may happen, and it will happen because no one recognized or cared about the urgency of your situation. You feel so hopeless, and helpless.

Then I made a phone call to set up some other appointments for him, because we have to keep going and keep trying,  and by a great, huge blessing from God, found a place for him to be admitted.

I won't comment here on the ineptness and complete disregard for my own son's safety and our safety that our local state agency displayed, because that is another post, and believe me, it will be written.  But I will explain that part of the problem that we, as parents of Logan, and that many other parents face, is that when many mental health hospitals hear the word "autism" they are done.  They will not treat it, and they especially will not treat it if it's complicated by a severe mood disorder like my son has.  Many hospitals use specific therapies such as group therapy and talk therapy to help disturbed children and adolescents sort out their feelings and understand their own emotions.  A child with an intellectual disability cannot be reached with this kind of therapy, so they will not treat him.  There are maybe two hospitals in the metroplex that will, and they are very limited on the space they have available.

I do want to tell everyone that has been involved with Logan's life up until this point:  God bless you. I thank God that I am surrounded by you.  Logan has been blessed by you.  We are tired, we are exhausted. and we now have to consider that the best option for him is to be placed somewhere that he can function and flourish.  He cannot do this at home any longer.  This is a hard thing to write and a hard thing to admit.  It's a truth that I have avoided, for such a long time.  There is a part of me that feels like such a failure as a parent.  I go over and over it in my head:  how I could have done this differently, or chosen that path, but I know that I fought as hard as I could for him.  I have exhausted every resource that was available to us.  It is now doing Logan more harm than good to be in this environment, and he needs to be with professional caregivers who can direct his behavior and create a safe, structured environment that is conducive to him learning appropriate behaviors.  If we do not choose this for Logan, he will, without a doubt, become a news story, or eventually, the ability for us to choose what happens to him will not be an option for us anymore. This is painful, and it is going to be painful, for a very long time.  I have held onto him so tightly, for so many years.  It is not my choice, any longer. At some point, when you have fought and fought and done everything you can do, you have to let God take over.  And I know, without any doubt in my heart, that He is very aware of Logan, that Logan is being looked after by Him, and that He has a plan for him.




8 comments:

  1. My heart hurts for you sweet friend...I'm here anytime. You're an amazing mommy to Logan and he loves you so very much... Sending big hugs

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  2. My heart hurts for you sweet friend...I'm here anytime. You're an amazing mommy to Logan and he loves you so very much... Sending big hugs

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  3. Thanks, Girl! I love you too. God is good, don't forget that, ever.

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  4. You are an amazing mother, one who seeks for the Spirit's guidance! You and your family are in my prayers!!

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  5. You and Brian are fabulous parents and have always wondered when this would have to happen. I know you have prayed and prayed for help and guidance. I really hate that there is not more help that can be given. It saddens me that there is not more help out there for people with mental disabilities. I am happy that you have had a great support system through all of this. It is hard making tough decisions for our children, knowing that this is the best for him as well as the rest of the family. We love you all and pray for you daily. I hope that Logan will transition well during this time and that he can get the help that he needs to flourish in life. He is a very bright child. We love you all!

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  6. Grief has different forms. I understand grief; my heart goes out to you, my dear friend. Prayers too, that your family will find healing and comfort. (((hugs)))

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  7. Rachel I'm sorry to tell you I've not known very much about your heartaches. Being a mother is a sacred calling because God has entrusted you with this special soul. I believe that He has witnessed all your devotion and concentrated efforts on Logan's behalf. You have done very well. I cannot even imagine how difficult it has been. In my heart I believe you can trust that your (and his) Heavenly Father is mindful of you and this plight. Perhaps a ward fast might be in order? If more knew I'm sure they would be willing to join in a special fast for heavenly help. Please call on me if there is anything I can do to help. I'm home babysitting Meg's so. So I can watch yours for you or bring in food. Please let me know how o can help. My heart goes out to you and I will be praying for y'all. Love you! Carmen

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  8. Rachel I love you sooo much and I TRULY KNOW what your going through bc i too have experienced it myself. Gary has come along way but we too still have outburst as well. Gary doesnt know how to express himself nor explain how he feels.

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