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Hope Is In Short Supply These Days

Cynthia (our ABA therapist/saint) and I decided that it was time for her to help me get  Diego to change out of his uniform after school.  I can’t seem to get him to allow me to do it (or anything..really), let alone ask him to do it himself.  It isn’t a matter of his ability to physically perform the action of dressing, it is a matter of overcoming his anxiety.  The anxiety (esp since school has started) makes him incredibly rigid, which then turns into a huge protest and then a self-injurious melt down.  When Cynthia arrived yesterday I warned her about what she was in for and asked when I should intervene. 

I trust her, she has helped us so much and has a heart of gold. 

She said that if she needed me that she would peek out and grab me, I told her not to worry that I would be right by the door. 

D was already protesting as they walked over to his bedroom, I knew this was going to be major.

I went and sat on the couch, D’s bedroom is right by the living room so I could hear everything. 

Which was both a good and bad thing.

D immediately started screaming and crying “NO I CAN”T GET DRESSED!!!!”

Cynthia calmly told him that he could do it, she tried to use her reinforcers, and tried to negotiate.

The situation just got worse….much worse 

Diego then began screaming “Mommy help me please!!. My mommy always helps me!!!!!!!!!!.”

It took every ounce of strength I had not to run in there.

 He needs to overcome this rigidity that keeps him from doing so much and nothing I am doing is working.

I HAVE to let Cynthia try. 

The screaming continued, he started to hyperventilate…I could hear every breath, every hiccup, every yelp.  Then he began to hit himself and kick the walls.  I could hear Cynthia’s calm voice telling him that it was ok, and that she was there to help him.  That once he was just a little bit calmer, she would call me in to help him.

This same pattern of behavior went on for about ten minutes while I sat crying on my couch.

I have never felt as helpless as I have for the past two months.  This same type of melt down happens multiple times everyday.  What I find amazing is how he verbalizes how he his feeling during these times. 

He will scream and cry “I want to calm down but my brain won’t listen, my body hates me that’s why it hurts me, I am trying very hard not hit you mommy!!!”  His body is tense, face splotchy and red, and he is typically on the brink of hyperventilating.

and I can’t do a f*cking thing to help.

Not

one

thing

Cynthia finally peeked out and I ran into his room, he was drenched in sweat and hysterical.  I scooped him up in my arms, hugged and rocked  him.  We laid in his bed and I rubbed his head, repeating over and over  “it’s ok, mommy is here to help you”.  I also told him that Cynthia and Stella want to help him too. 

After about 5 minutes his breathing was a bit more regular and the crying had subsided.  I gave it another 5 minutes before revisiting the task of undressing.  I told him that if he can just take ONE sock off that I will do the rest.  He protested in the beginning, but I told him that we could do it together.  He eventually took the sock off, and I praised him like he won an Oscar,and  I meant it.  Because for me….Diego removing one sock, FEELS like he won an Oscar.

Things finally calmed down and at this point Stella the ABA supervisor had arrived .  Cynthia  filled her in on what happened and we all agreed that the rest of the session would have to demand less from Diego.  Stella began to play Dinosaurs with D and Cynthia and I went to talk in the kitchen.  She gave me the run down of what happened in the bedroom and there were  tears in her eyes as she said “It is so hard to watch him like that.  You can tell he is trying so hard to get it together.” 

So of course this opened the flood gates for me, I excused myself and went to the bathroom.

The rest of the session went on without any more major meltdowns. 

Stella came up with a new plan to reduce the demand and use the token/reward system for EVERYTHING he does. 

I listened and I will do it all,  but honestly I am not incredibly hopeful.

Hope is in very short supply these days.

I always try to be so PC about autism, but you know what?

I hate autism, I absolutely despise it.

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About sonidoinquieto

I hate writing bios *bio pending*

9 responses »

  1. just catching up. Such a painful post, I have been there, it’s so tough. I wanted to give HUGE props to Diego for pulling together after such a traumatic time. To be able to have ANY semblance of an ABA session after that is HUGE, AMAZING, WONDERFUL! I am in awe!!!

    XO R

    Reply
  2. I want to re post this a million times. I want to scream at myself for not reading your blog more consciously. I want to drop some encouraging biblical understanding like Red did. I think I will just say that most of us will never get it but that God truly understands. He is not slow or random or insensitive. God knows what’s up in a crazy way that you might not understand. I often don’t get it. I was walking down the street yesterday going, “God if you don’t want me to have it, then why do you let it exist?” He want’s me to chose Him. He wants me to chose him over my own understanding. He wants me to let Him intervene and let go so that I can catch a glimpse of what is in store. He wants me to understand that He created finite and scientific complexities and that what I’m going through He can handle also. I agree with Red that you can be honest with God and tell him that life sucks. I do. I cry out. I then helplessly and vulnerably ask Him to help me get through…and he does for the day.

    Reply
  3. Thinking of you and D all the time. Please remember to take care of yourself, and also remember what an amazing mom you are!

    Reply
  4. We have similar struggles in my house these days so i just wanted to reach out to say, for what it’s worth, you are not alone, these things are hard and every feeling you have is valid because it is real. Those of us who have been there have all had all of those same feelings. good luck to you and your family!

    Reply
  5. I have been wondering about you guys and am sorry to read that things have been so tough lately. I get this feeling, I know exactly what you are feeling, and I want you to know that it’s okay to feel this way. When I lose hope, I try to pull out the positives, because even on the worst days, there are grains of positive and they are what I hang onto. D is an amazing kid, and you are a wonderful mommy. xo

    Reply
  6. I know that you are always trying so hard to be forward thinking and have high hopes about how difficult things are becoming. But sometimes it is absolutely essential that you face your real emotions, because at the end of the day if you don’t acknowledge them then you can never grow from them. IT’S OKAY to admit that you feel hopeless, if you didn’t you’d be fooling yourself. And then hopelessness would never leave you.
    I’m very proud of you, and my heart and stomach turn with yours at things like this. We are not meant to always feel on the up and up- it’s just not humanly possible- and it’s okay to keep it real.
    I love you =) The Psalms in the Bible are full of rather depressed people, acknowledging their true emotions to the Lord. And He does not discourage this; but rather faithlessness and angry complaining is discouraged. We can have faith AND sadness- God knows how weak we are…we are the ones who try to believe we are innately stronger then we really are.

    That’s why He’s says, “Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.” Matthew 11:29 ❤

    Reply
  7. Everything happens for a reason and if your son has autism then it was meant to be. You just have to be positive no matter what is going on in you all’s life. Maybe autism was put in your life for you to have patients or something else. I dont know but you have to try and figure it out or be content and more on with the life that you all are living. but most of all, you and your husband needs to stay positive or just you for everyone and at the end, things will work out.

    Reply
    • Sooooooooo not helpful! Pithy insistance that a parent should feel a certain positive way about the autism-it’s obsurd and an insult. You don’t know what you’re talking about.

      This blog is a blessing. I’m heartbroken at my kid’s diagnosis.

      Reply
  8. my heart goes out to you. i have experienced such days with my son, and i know how gut wrenching it is. take a deep breath. tomorrow might be better.

    Reply

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