Crisis Intervention

“[This is the story] of a woman’s devotion to the child who is both her burden and God’s singular way of smiling on her…” Jewel, Bret Lott

keepcalm

I recall reading in Susan Senator’s book Making Peace with Autism about going through periods of crisis with your child, and how some crises can be so difficult that there’s nothing to do but hold on for dear life and wait for the storm to pass. I feel like we’ve been in a crisis like that.

My girl has gone through a dreaded regression and has been exhibiting behaviors even extreme for her. She seems to have lost all toilet-training. She’s up all night doing her up-all-night antics of yelling, crashing, banging, humming, breaking down her bed. She’s been very hyperactive, a tornado, out of control. She’s picked up a new hobby of eating things that, well, you just don’t eat. She’s stripping. She’s been harder to engage than ever, prompting her beloved therapist T to say “this is the worst she’s ever been.”

I’ve been in a haze just trying to hold on to patience and keep up with all the messes and bathroom accidents all over the house. (No use putting on a diaper, she rips them to shreds). When I complained to my friend Carrie that I’d been destined to a life of poo-cleaning, she reminded me of Jesus washing the smelly, dusty, cracked feet of his disciples – how He humbled himself to clean their filth. It may sound funny, but it’s given a little purpose to my days. To think that I’m serving Rhema in love, but more importantly that I’m serving Him as I care for her. Let my lifesong (everything I do) – even this – sing to you, Lord.

I’ve always been confident in my ability to figure out what’s going on with her. When her sub-clinical seizures returned last spring, I knew. This time around I was unsure. Her doctor (and others) suggested that the sudden increase in behaviors was due to Brandon’s absence. While I agreed that that was certainly part of it, I just couldn’t believe that was all to the story. I was concerned that the seizures had returned or her medication was making her crazy.

Finally, yesterday her doctor agreed that something must be done. We increased her anti-seizure med – this will either calm her somewhat or make her more hyperactive. Her doctor is also scheduling her for another overnight EEG in the hospital.

Last night after the medication change, we finally all slept. In fact, we overslept. And it felt GREAT! (Amazing what a good night of sleep can do.)

It remains to be seen whether the crisis is over, but I’ve got my second wind. I know we’ll make it.

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30 thoughts on “Crisis Intervention

  1. Sis, I pray your strength and rest. God has me in a place of “repositioning” (I am not working at the time) so I am available to come and help out during the day. Please let me know if you need me to help out.

    I love you.

  2. Oh hey, – did I also say man that stinks and I’m so sorry you are going through this? I meant to!

    Your lifesong is beautiful Jeneil. Your strength, your endurance, and your faith sing in your words and in your actions.

    So glad all of you got a good night’s sleep.

  3. Thinking of you and praying the medication change continues to have a positive effect on both Rhema and you all. Hope, too, that the dr. finds out what might be at the root of this regression — definitely a crisis. Sending you hugs.

  4. Hi there — I discovered your blog last week. My son, who is almost 2, was diagnosed with autism last month. I can’t tell you how much your blog means to me…particularly as a fellow believer in Christ and writer. Your words are so true. They break my heart but are full of hope as well. Thank you so much for all that you share…your family is in my prayers!

  5. Wow. I’m praying God will send you some additional help during this time. Jonathan’s regression last year was “bad” for him, but not compared to Rhema. Praying for you.

  6. that quote at the beginning is so perfect.

    praying for you and thinking about you. i can’t help but believe that rhema’s cure/therapy/breakthrough is going to have a huge impact on thousands of other children. believing with you.

  7. I like how you were able to change your state of mind to serving your daughter with love and serving Jesus. Maybe every situation can be turned around that way… I am going to try that this week during more difficult days with Little Bear and Pufferfish! Thanks for the inspiration! I am glad the doctor was able to help Rhema (and the rest of you) get a solid night of sleep!

  8. Simply love the way you shifted perspective
    Perhaps the shifted perspective helped you see beyond to the real problem- that she needed more medicine
    Hugs and smiles
    Also it does not sound like a real regression – that dreaded thing where there is a real loss of skills – a true neurological reshuffle
    But a temporary regressive period – which she will hopefully emerge out of soon
    Sending you many many good luck vibes

  9. Thinking of you and I really, really hope you get some answers. Follow your instincts. So glad that you got a good nights sleep. After just spending a night in the hospital with the Roc I remember what sleep deprivation feels like. Hope you get another good nights sleep tonight. Hugs.

  10. Jeneil I love the idea of patiently serving our children through crisis. I will take this with me. I hope things turn around for the better. I will be praying for you.

  11. So glad you got some sleep — praying that it will be the new pattern. Surely Rhema’s regression is temporary, but it’s so hard not knowing *how* temporary.

    Your perspective is awe-inspiring.

    Much, much love!

  12. G.T. is 8 years old and finally potty trained this spring. His mom made him special pj’s he can’t get out of or rip his diapers off. She used a pair of tight fitting spandex shorts and a hooded zip up short sleeve top (he bounces and gets very hot, he’s also a bit of a chub). Anyway, she sewed the bottoms and top together at the waist with the zipper at the back. Once the bedtime diaper goes on and he’s zipped into the jammies he can’t get out. Neither can he reach up the leg due to the tight spancex fit of the shorts. It’s worth a try. She doesn’t miss the middle of the night poo-cleanups at all!!!! It would be worth a try to see if it would work for you & Rheema.

  13. So glad the med change seemed to work. Will continue to pray for rest and peace.

    PLEASE LET ME KNOW if I can help in some way when you go for the overnight EEG!!

  14. “Jesus washing the smelly, dusty, cracked feet of his disciples …”
    You’ve got yourself a powerful friend. And your power, my friend, to take those words and let them help you — amazing.

    Sending you large hugs and a deep, dreamless night of sleep (I hope) again … Nothing like it … I know.

  15. Your life song is truly so beautiful and it’s fragrance may seem more like cleaning fragrances right now; but no doubt it is also a sweet fragrance to God as you serve your daughter as unto Him.

    I pray for your rest. That your strength would be renewed and that your joy would remain full. Peace to Rhema. May God be flooding her soul with His love, peace and rest. I also pray that Hope would be healthy and an extra hug from God right now to you both.

    Love you girl – I pray for you often!

  16. Been caught up in my own drama to the extent that I lost touch with others and am sorry to hear about the verrryyy rough patch you’ve been experiencing. So sorry. Wish I had answers and a magic wand.

  17. True, it’s amazing what a decent night of sleep can do :). I hope things are looking up for ya’ll.

    Thanks so much for your words of encouragement on my blog… it means a lot, especially when I come here and see you’ve been dealing with a crisis of your own. (((hugs))) I continue to keep your family in my thoughts and prayers.

  18. Hey Jeneil, i’m belatedly reading this one. There truly is a verse in the Word for everything we experience. I can relate as I just took Reid off Abilify in desperate impatience for a shift–risking a return to the rage-days. Amazingly, he’s back “with us”. The meds continue to scare me…and yet God prompts us with that whisper in the ear which way to go, when to go right, when to go left, when to try meds, when to go off….Your lifesong does sing to Him!!

  19. Pingback: On Autism and Seasons « Autism In a Word

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