Listening to Emma

“Bad ear infection.”  This was the pronouncement made by the doctor who Emma saw yesterday.  Emma knew.  (Click ‘here‘ for a post about another time Emma knew and the only other time Emma had an ear infection.)  Emma told us to take her to the doctor.

We are relieved we made an appointment and sought help.  We are grateful to have her on antibiotics, which will ease her pain.  We are happy she is feeling better.  Those are the important points.  All the other words racing around in my head are less factual and more words that poorly convey my feelings of despair that I didn’t realize her pain was different than usual, that it meant something else was going on than a change in air pressure and anger with myself that I didn’t rush her to the doctor the minute the school called me two days ago.  My defensiveness, like the stereotypical white angel perched on one shoulder whispering, but you didn’t know, you couldn’t have known, is countered by the angel with devil’s horns yelling, “Yeah, but you should have!”  That dialogue or actually any dialogue that begins with – But you should have known – is better left elsewhere.

The art of the beat up job, something I could certainly write a handbook on at this point is not a message I am interested in perpetuating or sending.   What I am interested in is how I  might avoid a similar scenario in the future and take the necessary actions so that next time I can take care of my daughter in a more timely manner.   That’s interesting.  The beat up job is not.

Conclusion:  When Emma says, “Go see doctor.”  Immediately get her to the doctor.  Do not wait to see if things will get better.  Emma knows.  The cliché “better safe than sorry” leaps to mind.

This morning – Emma dancing to MJ’s Beat it 

Emma’s new-and-improved old string is back!

23 responses to “Listening to Emma

  1. So glad your beautiful girl is on the mend. Don’t be too hard on yourself. Getting it right every time is hard enough with NT children. I have learnt over the years that when my son tells me he has a headache, it means he has a migraine. When he says he’s dizzy it usually means that his eyes are flicking up and down he’s having a small seizure. These things took time to know. Parenting like life is a learning curve and we are all on it. Be kind to your good self = )

  2. Definitely don’t beat yourself up. We are like detectives, we seek clues and look for patterns and they hopefully help lead us to the answer. Maybe the ear infection is from her swimming, so now, since you don’t have much else to do 🙂 when you swim you have to keep a watchful eye on her ears. But don’t, don’t beat yourself up. You cannot be all-knowing.

    • I just read the CDC’s advice about swimming and ear infections, so am feeling a bit more equipped in that area. She loves, loves, loves swimming and sprinkler parks and anything with water, so keeping her out of water isn’t an option, keeping water out of her ears however… I’m ON it!

  3. All is good !!
    Emma has your beautiful legs !

  4. Took Brett to dr for physical once. He started running a fever before we got there. So, she checked him over. We figured virus….3 days later, in hospital with pneumonia. Another time he went, checked good…2 days later at er with double ear infection……also came from him loving water and laying in the tub all the time…..Doctors miss it, parents miss it. No beating yourself up!!!! Especially when she has the other ear pain that happens too…..there is so much guessing!!! You are an awesome mom!!!! Positive thoughts! 🙂

  5. My friend Ibby taught me how to make the heart button and smiley faces, now I’m using them all the time. Ibby would laugh if she knew she’d inadvertently created a monster. Come to think of it, I’ll have to tell her.

  6. Well I said as much yesterday but you don’t need to beat yourself up. In this instance trying to think about it from your daughter’s perspective made you concentrate on things that wouldn’t occur to many people. You learned from it though and that’s more than many can say.

    I envy Emma her ability to know what was going on with her. I got my first ear infection at 20. For much the same reason- a love of swimming. I had no clue what it was. I had my first shift ever with the most severely developmentally delayed client I ever had in the 24 years I was able to do respite care (blind, deaf, paralyzed and basically his only activity was seizure activity) The pressure and pain kept building up and meanwhile I was trying to make a favourable impression on my client’s parents who often stayed at home concentrating on their other two children rather than makling a full get away of it.

    It never occurred to me to try to describe it or get any sort of medical help for it. Eventually my ear drum burst and too my horror “stuff” was leaking down my head. The pain was alleviated but it is hard to make a good impression with the contents of an infected ear streaming down your face. The mother was fairly unfazed though. Probably she had to be. She quickly concluded I must have had an ear infection and told me to go see my doctor on Monday which I did.

    The GP I had in university was somethng of a marvel for being way ahead of the increase in popular understsanding of high functioning adult autism. More than a dozen years before the surge in literature about it he was accutely aware of how much autism still impacted me. He was quite matter of fact that since I didn’t apparently sense it in the early stages and likely wouldn’t again that we would need to prevent them. He used to whip up his own concoction of alcohol and mineral oil as a preventative for swimmer’s ear and I used it faithfully for many years.

    I don’t say things I don’t mean and from all I have read here you are going to great lengths to understand Emma. Far greater lengths than many go to so don’t “beat yourself up” at times like this. You seem to be a very fast learner and more importantly by sharing your journey as a parent you are no doubt helping others learn possibilities that may not have occured to them. Emma is lucky to have you to assist her.

    • I really, really appreciate your sharing about your ear issues. Do you have the “recipe” for that ear concoction? I would love to have it. Also with instructions on how best to apply, if you don’t mind.

      Emma has shown me, on numerous occasions, that she is 100% accurate when it comes to –
      A) whether she needs to see a doctor
      B) how to fix a broken light in the refrigerator or how to blow up a bouncy castle and many other arbitrary and seemingly random things
      C) a person’s name
      D) how to get somewhere
      E) the formation and color of the seats on any given subway line in NYC
      F) the tune to a song
      G) the lyrics to any song she’s heard, even if it’s just once or twice
      H) upsetting things people have said to her, that she then repeats later during seemingly unrelated times.
      I know there’s more, I just can’t remember all of them.

  7. Andrea Demott

    I love your blog! I stumbled upon it last week… And I am glad, for this “stumble”.
    My daughter is 5, just diagnosed with ASD. She even resembles, Emma, both BEAUTIFUL girls!
    Keep up the candid daily portrayal, of raising a spectrum child:)

  8. This is, and has always been, my biggest nightmare. Marisa is pretty much completely non-verbal, with a high tolerance level for pain. Our only clue for ear infections is when she’s literally grabbing her ear. My biggest fear is that someday, something will be really, really wrong…and she won’t be able to tell us. 😦

    I’ve only recently discovered your blog, and added it to my Favorites list. It’s helpful for me reading about another GIRL with autism, and your coping strageties. I only wish Risa was as high functioning as Emma, and I had your attitude.

    • Hi Angie,
      So glad you reached out. As Emma has gotten older she’s gained language and also has become much better at being able to convey her feelings, though, as you’ve already read, I have a difficult time sometimes interpreting her. The single best thing I’ve done is read other blogs written by autistics. I have a small blog roll which is 95% blogs written by autists. Amy Sequenzia, who I’ve posted about and provided some links of her writing is completely non-verbal. She’s been a powerful voice for me to discover, because reading her pieces give me tremendous hope for my daughter. Really glad to hear from you. We aren’t alone.

  9. Is there anything specific you feel helped Emma gain some language? Risa has been in “speech” therapy for years, and still only says a few very basic words, very infrequently. We are trying to get her to use her Alt Chat (speech device) and her receptive understanding is pretty good. I long for the day to hear her talk, though!

    • Hi Angie, Emma had some language right away as a baby and then lost all of it. She stopped speaking almost completely when she was about two and a half. That was when we realized we had to find help. We got the diagnosis and began a pretty brutal ABA program, which I don’t think was helpful to her. After about a year we trained with Stanley Greenspan in his DIR/Floortime program. That was a better fit and she began to speak a bit more. But we’re talking about years here. Then we started working with Dr. Marion Blank, who is best known for her literacy program. Emma began to learn how to read, write with a pen and type on the computer and the language definitely began to increase. We certainly cannot have a conversation with her. She is able to tell us (sometimes) what she is feeling or if she wants something. In the past year she’s begun commenting on her environment, pointing out the window when it’s raining and saying, “It’s raining, have to bring an umbrella.” Things like that. Just now she asked me, “Where’s the other yellow chewy?” (Chewy tube) Which was pretty wonderful because this is new for her, this kind of language and so, of course we are very excited to hear her say things of this nature. Emma is ten years old. How old is Marisa?

  10. Marisa is nine. She never really talked, and was developmentally delayed all across the board. She began Early Access at 18 months old, and was officially dx’d at 3 years, 2 months. She has been in two different schools and special ed classrooms since then. She is currently in speech, ot, pt, cranio, and aquatic therapy.

    We unfortunately cannot afford ABA, which I always wanted to try. I live in the Omaha area, and the only provider I have EVER found won’t accept Medicaid, which is her only insurance. 😦

    She is also starting to develop, which I’m sure you can empathize with. It seems like the older she gets, the more she drifts away…despite our best efforts.

    I read that you wrote about Emma’s constipation issues, Marisa has those as well. Risa still isn’t completely potty trained, either. She’ll do well for several days, and then have accidents non-stop. It sounds like Emma has been trained a long time, can I ask which methods worked best for her? I read the post about the nite time alarm – I’m not even worried about nite at this point!

    I also remember you saying something about Emma on the GFCF diet, but it didn’t seem to help? We’ve not tried it with Risa yet, I just started her on probiotics recently, though.

    Is Emma on any medications?

    • Angie, of course this is just my opinion, but ABA is fraught with problematic issues. I know there have been children who have been helped, but I would absolutely NOT have put Emma through the strenuous 40 hours a week of it that we implemented, had I done more research on it. In fact Emma regressed during her ABA program, and when she did, her teachers and therapists blamed HER. She was four years old! The “science” behind it is not so much science as it is good PR. Again this is just my opinion.
      As far as the potty training. This was an instance where an ABA style program WAS helpful. We have a chart and every 20 minutes one of us took her to the bathroom. It was all done very matter-of-factly, with no emotion. She loves music, so every time she went to the bathroom successfully in the toilet, we played some of her favorite music. I cannot remember how long we did this for, but I know it was more than a few days. I have old charts that span MONTHS! Eventually she graduated to underwear during the day. When she was eight we tackled the nighttime wetting. I’ve written extensively about it on this blog, look under category and go to “bedwetting” I believe the first post is in May 2010. By September she was out of diapers completely and to date has never had an accident.
      The GFCF diet was a disaster for us. The Autistic, E. whose blog is: writes about her food preferences and how and why it’s so difficult for her to eat anything but a small range of foods. E.’s experience has gone a long way in helping me come to terms with the fact that Emma was not helped by the GFCF diet and how it’s okay.
      And lastly, Emma isn’t on any medications. We have her on magnesium supplements, she takes a multi-vitamin called Nordic Berries and she takes a probiotic and fish oil. Every night we have to give her a “squirt” of Melatonin or she cannot sleep.
      I think I’ve answered all your questions, if not comment again!

  11. Sorry to ask so many, but yes, you answered them all!

    I have always heard that when ABA does work, it’s best done with very young kids. At nine, I have my doubts that it would be all that helpful for her at this point. I still would’ve liked to have tried it, though. It’s very frustrating when you are limited, therapy wise, to only what your insurance will cover.

    Eventually, I would love to try the diet with her. Currently, finances prevent us from doing so. (I’m sure you know how expensive organic and gluten free can be!) I’ve seen it be helpful for other kids. Do the probiotics seem to help Emma with her constipation issues?

    Medication wise, Risa has been on Risperdal since she was four. We tried taking her off of it last year, with disasterous results. Even on it, she sometimes displays violent and self injurous behavoir. She has also been on Zoloft for about a year, though I really don’t think it has helped much and plan on getting her off of it. For sleep, she takes a small dose of Klonodine at nite.

    I hate having my child on any meds. Hate it, hate it, hate it. But when the alternative is her hurting herself and/or others, what choice do you have?

    I will definetely go back and read the potty training archives. 😉 I never thought of using music as a motivator, that’s a great idea and I’ll have to try it!

    • Oh Angie, don’t apologize at all for asking. I am really happy to answer any that I can. I have had so many kind and patient people in my life willing to answer my questions, the questions never stop! Now the people I ask are almost ALL Autistic, which I am so grateful for, because their insights are better than any specialists.
      I think the thing that has helped Emma with her constipation is the magnesium. We give her 500mg twice a day. That and the fish oil, which she takes cheerfully. Not sure what I’d do if she didn’t take these things so easily, even asks for them if we forget! I am on the fence regarding the probiotics. I took them when I began giving them to her and my stomach was in so much pain, so I’m a bit wary of them. I think I took too many, tripled the dose and that may have been why.

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