January 31, 2012

My Biggest Fear

There are so many things I have not learned how to deal with well when it comes to autism. Coping is a never-ending process, I suppose, and we all have our limitations. Mine are fairly gargantuan.

I still cringe when Daniel is having a billboard-sized autism-moment in public.

I sometimes display a total lack of patience when I am trying to get Daniel to stop the stims and participate in life the way I want him to ... the way his sister does ... the way I thought he would, too, back in the day when baby-giggles and first steps were enough to make me feel like I was the luckiest woman in the world ... in the days before autism entered stage-left and took over the show.

And I get frustrated at the end of a long day when he hollers. Screaming, you see, is one of his primary ways of getting my attention -- especially when we are in the car. He has something he wants me to know, and I should be sympathetic. If he could express his thoughts with words, after all, he would. And whatever it is, it obviously is important to him. But he can scream so loudly that one of these days, surely, I am just going to drive right off the road.

So many things I have not managed to do ...

And here is THE ONE -- the one thing I am not able to do that is of paramount significance:

I have not learned how to let go of the fear of what will happen to my son when I am six-feet-under.

I know there are so many special-needs-parents out there struggling with this fear -- this anxiety that can overwhelm you when everything is going relatively well -- emphasis on "relatively." This fear can sneak out of the dark and take you down. It is vicious; it is malicious; it is all-consuming.

I know that I can make plans for him. I can move to another state with better programs for adults with disabilities, and given that I currently live in Texas, I probably will. I can find a group home or some other living environment where I think Daniel will be safe. And even though I won't be around anymore to make sure that Daniel's days are dominated by the things that bring him the most joy, I can search for an arrangement where somebody at least promises trips to the pool, days at Six Flags, and Dairy Queen cones with chocolate coatings.

But when I am gone, will it really happen?

What will happen to this boy -- MY boy -- the baby who started moving in my belly whenever I turned on Norah Jones, the toddler who took his first steps from the couch to my extended arms, the eight-year-old who finds joy in so many things but who cries the tears that pierce my heat like arrows when he is struggling to tell me something and I just ... don't ... know ....

What will happen to Daniel when I am no longer here?

It is the fear that will haunt me, even though I have gotten fairly good at living in the here and now ... it is the fear that will haunt me until I take my very last breath.


  1. hello i hear were your coming from , i have a little girl aged 4 she will be 5 in may , she is ment to be going of to kinder when school starts beck up in 2 weeks , but we have decided not to send her because she wont leave me she wont eat drink ,screams has the whole melt down, but its not out of sight out of mind for molly and i can not bare to put her threw it so we are looking at home schooling for next year , and this year we will do early learning programs that way i can stay with her. and as for melt downs out in public i try not to look at anyone because i know they are staring, i think its very rude of folks to do so!! oh molly is our youngest of 4 children i knew something was not right as she got older and once she got to 3 and was not talking just screaming i new some thing was up i try not to compare her to her older siblings whom are 19,16,11 but we wouldnt change things molly is molly and we all love her to bits, but i do worry about her future at times and have layed awake many a night!!


  2. Oh, sweet Leah, how I share your fear. This is what helps me. Our boys are blessed with family! They have sisters. Now, I never want Ella to feel she has to care for her brother. I want her to live her life. But, one thing I'm sure of is these little girls love their brothers. They will make sure those DQ, Six Flags days happen. They will make sure they aren't alone at Christmas because they are family. I just know it!

  3. i so get this. and the least little thing will trigger the fear. i was washing rhema's hair last night. washing her hair is a JOB, lemme tell you. thick, thick, curls. and she's deathly afraid of getting water in her ears. anyway, i have developed a intricate, difficult yet effective way of getting the job done. and last night i thought, who will do this?? who will even care to/know how to do this when i'm gone???

    all i can do is pray and trust that God will take special care of her for me, through others. and i do thank God for the sisters - Olivia and Hope - for their love.

  4. ps - i LOVE these pictures of Daniel, beautiful boy.

  5. my biggest fear too! you really struck a chord with us ALL i'm betting. he's so adorable by the way :)

  6. I keep wondering when the time will come that I will know what my son's life will be like . . . . Will he talk well? Will he eat well? Will he start kindergarten at age 5? Will he be in a "normal" kindergarten? How much special ed will he need? Will he have friends? Go to college? Will he fall in love? Will he get married? Have kids? Be able to pay bills himself? Live by himself? Have a job? A career? And what will happen to him when I am gone? This post speaks to me. Thanks for writing it. It makes me feel not quite so alone.



    1. Katie, thank you for the note. I have been reading your blog for quite some time; you do a great job expressing the fears and frustration of a parent whose child has special needs. Lively is so lucky to have you for a mama.

  7. I just found your blog and it is wonderful! I have a little girl with SPD, and not autism.

  8. Anyway, as I was saying before I hit enter accidentally, in my other life I was an early intervention therapist for little guys and gals with autism. I think your writings are beautiful. Hang in there! I feel for you and your family, but rejoice to know you are out there, as one fearful, sometimes doubting mama to another. (Is that weird?). Thank you for writing.

    1. Thank you! It is such a compliment when another parent likes my blog. Thank you for reading, and I look forward to reading yours. :-)