17 different women, 36 crazy children, 0 babies in utero
Adventures, Advice and Questions from a group of Mormon women who met in Queens, NY and have now scattered all over the place.
 

Saturday, May 19, 2007

No Deodorant Miracles, Just a Lot of Sweat and Tears

A couple weeks ago I dreamed that my four-year-old autistic son, Noe, was strapped down to a hospital bed while being examined by Dr. House. If you haven't seen the television show, House is an eccentric curmudgeonly genius who solves impossible medical cases in an hour. While House was examining Noe, something caught his attention and he started sniffing around the room until his nose landed under my armpit.

"What kind of deodorant do you use?" he asked.

"Secret, I think," I replied with a puzzled look.

"Switch to Dove and your son will be fine," he instructed in his irritated, know-it-all voice. And then he turned to leave, off to solve his next case.

Of course...my deodorant was causing Noe's autism! Why hadn't I thought of that in the first place? It all made perfect sense....until I woke up.

It has been two years since Noe's diagnosis. Two years full of anxiety and research and therapies and more anxiety and lots of medical bills followed by even more anxiety. We have attacked his autism using a variety of approaches. We are treating him biomedically, taking advantage of supplements and keeping his diet free from gluten and casein, which often exacerbate autism symptoms. We have a private ABA program, which relies heavily on behaviorist theory to teach him new skills. He has speech therapy to increase his language. He attends a special ed preschool program, which is preparing him to be integrated into a regular elementary school.

Every time we start a new therapy, I try to be realistic. I tell myself he will make progress, but it will take time and patience and hard work. But a small part of me still holds hope for a "deodorant cure"....that a particular therapy will click with Noe and rid him of his autism forever.

It is possible. More and more kids are recovering from their autism. One of our ABA therapists has a son who was diagnosed with autism at age 2 and today, at age 5, he is completely free of his symptoms. Some kids respond amazingly well to certain biomedical treatments, and other kids, if they start young enough, can essentially be cured of their autism through hours and hours of behavioral therapy. Noe has hit a lot of developmental milestones in the last couple of years, thanks largely to his therapies, but he is far from cured.

Most days, I am ok with it all. I know that even if we never find that quick cure, Noe will still find his niche in life and be happy and productive. Most days I feel lucky to have Noe in our family. He is a sweet, affectionate, beautiful child who does a lot of normal 4-year old stuff: He rides his bike like a maniac, loves to swim and hang from the monkey bars, he whines about eating his fruits and vegetables and fights with his younger brother. Most days I say to myself that if this is our family's cross to bear, I consider myself blessed.

And then there are the other days. Days I spend on the phone with our health insurance, trying to figure out why they won't pay Noe's claims. Days I spend looking for qualified therapists for our ABA program, or trying to convince the ones we have to stick around even though we can't pay them what they're worth and they have no health insurance. There are evenings when I spend 4 hours getting Noe to settle down for bed, only to have him wake up every hour during the night. On his worst days, Noe can't focus enough to play or learn and reverts to his own world where he spins his toys or claps his hands or laughs hysterically at nothing in a corner by himself . On those days, when no amount of coaxing or bribing will bring him back, I go to my bedroom and scream into my pillow. I curse his autism and ask God, in all of His power, why He won't bring Noe back to us.

I am learning that some miracles come fast, others slow, and I'm redefining what Noe's miracle will entail. It will be the sum of the resources, energy and time we put into his therapy regiment over many years. It will encapsule all of the hard work Noe puts into his own therapy sessions. It will be amazing teachers and therapists along the way that find ways to motivate him to learn.

That said, I still wish all I had to do was change deodarant brands.


13 Comments:

  • I can really relate to this post. While my son does not have autism, he is a type 1 diabetic.

    August 12, 2004 we sat in the doc's office as nurses tried three times to get a blood sugar reading. Finally, a reading of 775 came. Normal blood sugar readings should be between 80-120. He was immediately admitted to the hospital and a whirlwind of activites, education, and acceptance came. This was only two weeks after his 2nd birthday. As his mother, I have always had this sense of fear, nervousness or worry for him. From the moment I found out I was PG with him these feelings started. Now as I ran through the hospital it was all starting to make sense.

    I should have stopped at the hospital gift shop and found me some Dove deodorant!

    Since he was diagnosed so young, he didn't know or understand what was going on with his body. He couldn't communicate to us that he didn't feel well. We tested all the time, kept food diaries and tried to learn as much as we could.

    We have also wrestled with the insurance companies, medical bills and trying to find the best possible care for him. Most recently, his Pediatric Endocrinologist moved out of state. Now we have to go out of state for his care, as he was the only Ped Endo in the entire state.

    As he has gotten older and more aware, he has started to ask questions. I remember leaving the doc's office one day, and he said, "When will I be done with my diabetes?" My heart just sank...I realized he was becoming aware. Again, where is that Dove deodorant!

    As parents we are trying to teach him as much as his little mind will allow. He now knows when his BG's are low or high, and how to test himself. He is even learning he needs to count how much of everything he takes before he eats it and lets me know what he took! He now wears an insulin pump and enjoys showing others what it is. He even tells people he has diabetes and wonders if they have it too!

    While the "deodorant cure" would be soooo nice and easy, optimism is it for us. Staying positive has helped me so much as his mother and teacher. Not letting those "bad days" get you down or "those things" people say or do bother you. It is cyclical, but the key is to realizing when you get in the cycle, that you've been there before and you know how to get yourself out. Then the cycles become shorter.

    I know there is a reason why to all of this. As he is getting older I can sometimes see "why." I know the future looks bright and my son is going to come out of this shinning! And I feel blessed to have his little spirit in my home.
    posted by Anonymous idaho at 5/19/2007 11:57:00 PM  



  • Wow Jen, what a powerful post. I am writing this with tears in my eyes after reading your description of life with an autistic child. You are so strong. Obviously your post (and openess on this subject) will touch many people's lives. It seems like I've read about / seen on TV a lot of stuff about autism lately. Do you think that it is finally getting more attention now that the percentages of children diagnosed is pretty high?

    The "deodorant" cure reminds me a little of my family's struggle with Parkinson's. We've had several family members diagnosed over the past few years, and while there is research being done you are still hoping for the "deordorant" cure. You're family is in my thoughts.... you guys are awesome!
    posted by Blogger Beth at 5/20/2007 12:20:00 PM  



  • {{{HUGS}}}
    posted by Blogger RCH at 5/20/2007 03:37:00 PM  



  • Idaho,

    Thanks for sharing your story. I think that you are right in staying positive is the key. This has been a challenge for me since I am by nature somewhat pessimistic. But I am doing better...perhaps this is one of the lessons I am supposed to learn in all of this.

    Beth,

    Yeah, I think you are right...the numbers are insane (1 in 150 kids are on the autism spectrum)and I can never say I am alone with all of this.

    There has been a lot more organizing and advocacy in the last couple of years. Mostly politicians and other celebs with autistic kids and lots of grandparents advocating for their grandchildren. This is godsent since the average parent with an autistic child is on the frontline...just surviving every day...and doesn't have the time and ability to organize and really advocate for their child.

    Although, I have to say...as much as I appreciate the media attention...I can't really watch those shows (ie) the Oprah show devoted to autism. I started watching it and turned it off. That just isn't our life. One guest had some shocking quote to the effect that if your child is diagnosed with autism, you will probably be divorced and bankrupt in a matter of years. I hated the implication that you lose your choices after the diagnosis.

    I definitely know I am one of the lucky ones as a parent of a child with few behaviors just a major language deficit, who doesn't have to work full time and has access to private therapies. Yet, I don't see myself in a position to advocate at this point, except for at the very local level (which I do)....so thank goodness for those grandparents!!!
    posted by Blogger Jen at 5/20/2007 04:34:00 PM  



  • I don't know if you consider your dream to be inspired or the outpouring of an overstressed mom mind, but I hafta admit that I love the idea of God communicating with you through a dream like that.
    posted by Blogger Julie M. Smith at 5/20/2007 06:38:00 PM  



  • Julie,

    Your comment intrigued me. I didn't think much of the dream since I had watched an episode of House the previous night and I tend to problem solve in my dreams. It was just very vivid and real while it was happening and it woke me up feeling frustrated and dumb for getting so excited about something so ridiculous.

    Honestly, I don't know what God would be telling me here....does anyone want to do a little dream interpretation? Maybe it will spark some inspiration for me.
    posted by Blogger Jen at 5/20/2007 08:00:00 PM  



  • Jen,

    What this dream means is that God heard my prayers that it was time for you to change your deodorant. Dove is really just sooo much better. :) But in all seriousness, maybe it was a little reminder for you to keep in mind that sometimes it is the small and simple things you do for Noe that make him the amazing little man that he is. After spending a week with you and the boys it made me appreciate you more as a mother then just my sister. One of the things that touched my heart was when you sat down with Noe and played with him. You did it more then once and I could tell that he LOVED it! You are an amazing mother and you were given Noe because God knew you were strong enough to handle everything that comes with Autism. Something many people cannot even begin to understand. Myself included. I hope that my little River loves me half as much as those boys love you.
    posted by Blogger Razzy at 5/21/2007 02:14:00 PM  



  • Secret deodorant causes autism! Oh, the lawsuits!!!!

    Good luck, I really do hope you find your magic bullet, although you are teaching us all along the way.
    posted by Anonymous The Wiz at 5/21/2007 05:19:00 PM  



  • Jen,

    thanks for sharing this (and you other posts on austism). I always appreciate and more importantly learn from your honesty. You are totally right, Noe is such a sweet child. I feel lucky to have been able to know him. Hopefully you can come out and visit us again this summer!
    posted by Blogger TftCarrie at 5/21/2007 09:21:00 PM  



  • Jen--

    My favorite line: "And then there are other days."

    Yes! Most days I do just fine handling/dealing with/being positive about my son's chronic illness. And then (usually after a set-back or extended conversation with the "nice" folks at our insurance company), some days I'm not.

    I know that it's natural to get discouraged, tired, even exhausted, frustrated, and a little crazy because of those things that we cannot control. But, sometimes it's hard to love ourselves (and our children) ANYWAY. It's hard to love life, even God sometimes.

    I guess I just wanted to add that I understand. And I'm sorry. And I'm happy that I'm not learning these lessons alone.
    posted by Blogger Maralise at 5/22/2007 10:51:00 AM  



  • I can't figure out anything useful to say, except that we're living the same thing and I understand.
    posted by Blogger cchrissyy at 5/22/2007 02:26:00 PM  



  • Jen,

    Thanks for this post. We're currently wondering if our 2yo might be somewhere on the autistic spectrum (and plan to get him evaluated after we move in a couple weeks). I'd love to talk to you about the signs and your struggles if you wouldn't mind. My e-mail is katiekins22 at yahoo.
    posted by Anonymous Vada at 5/23/2007 09:19:00 AM  



  • In these days, it has been observed that children are facing the most body odour due to high involvement in the exercise and sporting activities. In such a case, they need kids’ deodorant that could keep them stay fresh for hours because this will help them in staying confident amongst their buddies. http://www.wekeepitkind.com/uk/
    posted by Blogger Malinda at 3/11/2016 04:17:00 AM  



Post a Comment

Links to this post:

Create a Link

<< Home