Monday, September 13, 2010

Trying to get it out

I have several posts in mind, mostly I seem to stumble over whatever I want to write, it's just not coming out the way I want it to. So, I'll just blurt it out, and see what the hell happens next, ok?

In December, we thought Julius wasn't speaking because his throat was raw from reflux and he needed more meds, and he did improve and said a few things more clearly once he got more, but then....something happened. And he got quieter and quieter, and one day, Mr.C turns to me and says, I think he's deaf. And we realized that he never turned around for noise behind him, ever. If we clapped very loudly and close, the reverberations might make him turn, but nothing else. I thought maybe it was earwax or fluid clogging up his ears, but the pediatrician kept saying it wasn't possible.

Everyone actually, just kept saying it wasn't possible. The said that earwax and fluid could never ever clog up a kids ears, that I must just be ignoring him, not speaking to him, that he must have some sort of developmental delay and I was making it worse. Daycare and speech therapy was the answer. Definitely not being near me, because after all, if he wasn't developing perfectly, it had to be his mothers fault.

The 8 minutes or so with limited oxygen? The amount of time he spent with no oxygen, completely unresponsive, no pulse, no nothing? The long family history of language, learning, and speech problems? Nope, all irrelevant, in the face of what we all know, is always to blame, bad mothers.

No one blames fathers, or doctors, or genetics, or crappy non-existent medical research, or just plain, old, bad luck. Nope, it's all of us shitty moms. Some of us even start to believe it, and think it might be true, and that maybe it's divine justice, taking revenge on us for risking pregnancy and birth another baby with our really bad medical history.

I pressed on, in the face of all that guilt and blame. I got a hearing test, and a referral to an ENT, and I went to a psychologist, and a speech therapist, and I put up with more blame and more decrees that daycare would "cure" his obvious neglect. At the first hearing test the audiologist did a basic test, and declared him fine. But I have no idea what on earth she was measuring because by the time we went to the ENT, he had a giant wax plug in one ear. So large, and so awful that my husband had to hold him completely still while surgical implements were used to pull it out.

The 2 hearing tests in a row after that were still showing loads of fluid so his hearing was muffled, likely with gluey fluid that most Docs can't see on sight, but hearing tests can detect easily. Yet for some reason, the ENT did not tell us the truth. He told us to relax, just come back in 6 months.

I learned long ago that if a Doctor tells me to relax, and I do it, I end up burying a child, or deathly ill. Never ever relax is my motto. I insisted on one more hearing test referral.

So while I suffered more insults and paid more money to speech therapists and psychologists and listened to more discussions of how daycare would cure everything, we had a flood. A giant flood. And we called in the insurance company who wasn't going to cover anything, until I called in a contractor and started pulling up the now moldy subfloors, and gee whiz. There was an open overflowing drain under the subfloor. Our drains were blocked by tree roots and all sorts of strange items, and over the last many years, the water had spread mold. Black mold. Did you know that Black mold causes sinus problems, and glue ear and tinnitus, and allergies and sometimes, excessive earwax in dehydrated kids?

So, one insurance claim later and several thousand dollars later, we have a ripped up basement, clean flowing drains, and way less mold, but until mid-october, who knows if it's all gone? We're breathing easier for now.

And the finale? On our last hearing test, Julius' ears were free of fluid and all obstructions, all earwax. His left ear passed, but his right ear failed.

My son is deaf in one ear, and has possibly had limited hearing in the other, and every single Doctor from birth onwards missed it, and never bothered to properly check.

But they never missed a chance to blame me. Proving that nothing ever changes. Nice.

I need to get into a pediatric hospital that can do more advanced testing now, and make sure that he can hear someday, and communicate someday. I don't know just how serious or mild it is. I only know that he has about 10 words, and is getting increasingly frustrated, and is very very far behind. None of the speech therapy we've paid for has worked. And because we've fallen through the cracks, and he wasn't tested properly at birth, I don't know if or when we ever will get into the kind of specialized hospital program that we need.

I need another miracle.


  1. That's so ridiculous, that it was missed so many times. No words of advice, but many thoughts of support. xo

  2. Different circumstances of course but I've been there. I can so relate to your statement,
    "Some of us even start to believe it, and think it might be true, ..." Although we know it isn't true it is very demeaning to be treated that way!
    Not sure of cost (I know it won't be cheap - what is nowadays) but they are doing cochlear implants now. Can you get any help from the Hearing Society?

  3. Yikes! Lots of thoughts coming from here too.

  4. Wow. That's unbelievable. Er, or at least it should be. I'm sorry, and wish I had a miracle around.

  5. Do doctors sense people who are susceptible to that sort of guilt trip? I've never gotten that sort of thing, but then, my daughter has never had any major problems. Do you just have bad doctors where you are? That is completely unreasonable.

    I hope you can quickly find the proper care for your Julius - but there is lots of good help available. My cousin's son had major hearing loss in both ears, and with cochlear implants and decent schools, he's doing very well.

  6. Well, the doctor's behavior is just inexcusable.

    You, however, are one tough and determined lady and I have no doubt you will get the help you need for Julius.

  7. NOT. YOUR. FAULT!!!

    I hope Julius can get the help he needs fast. Obviously the earlier you can start, the better. (((hugs)))

  8. Man, that's awful! The denigrating treatment and the hearing impairment. Not knowing the severity must cause you lots of anxiety right now. I hope it turns out to be lots less severe than you fear.

    I did some baby sign language with my daughter before she had learned to talk. We only used a very limited vocabulary of 10 signs, tops, but it worked well.
    The reason I started was because I read that baby's who can sign are less frustrated by the fact they can't talk yet.
    I'm sure you've heard all about this, you may even be doing this already.
    Anyway, the baby signs I learned were derived from regular (local) sign language for the deaf.

    There was a controversy, whether learning to sign would discourage deaf kids to learn to speak. I haven't followed this up, however, I believe that there is now more or less consensus that learning one won't preclude the other. On the contrary. Language is language.

    I hope this isn't completely off the mark of your post.

  9. I'm so sorry aurelia, what a crappy, awful story. So glad you have some kind of answer, and hope Julius gets what he needs soon.

  10. Are you able to go to another city and see a specialist, or even to the States? Not that the US has better or worse specialists, but sometimes they feel like they have something to prove to the Canadian healthcare recipients.

    I just don't understand why the pros have to point the finger back at the parents (usually the moms). See it. Treat it. Move on from there, dear doctor.

  11. OY. I haven't read blogs for a really long time and I'm sorry to hear about this terrible ordeal you've been through. Does 10 words mean at least some hearing? I mean, I'd think it does... I'm praying for another miracle for you!

  12. Yikes. That anyone could still thing to blame the mother is unfathomable. Julius has a great mother, who will get him what he needs.

    (PS Love the illustration up top.)

  13. I feel your frustration. I can't even imagine how angry I'd be. I just can't understand why doctors and their staff always assume it's the patients fault or the mother of the patient. Good on you for listening to yourself. Now they know! I can think of a few letters I'd write to those people.

    Bravo to you. And may your child heal. He has plenty of time to catch up.

  14. When you are alone, and the overwhelming despair of your circumstances clouds your vision, hold fast to the truth that you are a good mother; that you can and you will make life better for your son. There are people who want to help you. It is my hope you find them and they find you. Good people do exist. If you only need one person to believe in you today, to confirm your sanity in the most dire of straits, I will be that person. You and your children are of incredible worth and value. When all others seek to cast you off, reject and judge you as unfit, I choose not to.
    It is so good to see you are writing again. There are women and men who need to hear what you have to say, that need the validation of your words and story. Keep writing, Aurelia. The world is a better place for it.

  15. There were a brother and sister in my neighborhood growing up who had behavioral issues and it was finally discovered that German Measles had given them both severe hearing loss.

    The irony was that their family pediatrician (mine too), a highly reputed doctor, had failed to catch it in either of them. And she had a hearing problem herself!

    Someone mentioned baby signing and there are some excellent books on it. The library where I work also has a DVD series called "Baby Signing Time" which is very popular.

    I'd also see what groups are in your area that work with the hearing disabled. You may be able to find a support group and perhaps even someone to help you advocate for Julius.

    He's a lucky little boy to have a mom like you that doesn't just relax and take the doctor's word for it. Someone who has fought for him and will continue to do so.

    And you will prevail. I know it.

  16. W...T...F????
    I'm sure they have made great strides in technology since my grandma got HER cochlear implant, 40+ yrs ago.
    hang in there babe; we all know you're a great mother!

  17. "But they never missed a chance to blame me." oh how I know that old song. Sometimes I feel lucky my kid has a genetic disorder bc I KNOW its not me. But still they try...

    Julius is a bright kid and you are a kickass mom. I know he will get what he needs but this sure sucks in the meantime.

  18. This sounds like a terrible, awful, stressful time. But now that you have a diagnosis of hearing loss, hopefully Julius can get some real help.

  19. They tried to tell me my ADHD kid needed full day daycare because I must be doing something wrong. The half day preschool teacher used to tell me no way.

    My best to you and yours.

  20. I share your frustration re: why are moms always blamed first? It makes me so ANGRY when people in the "helping" professions resort start blaming the parents (in particular the moms) when, in fact, they are the ones who are incompetent. I am SO sorry that you and your son had to go through this nightmare. I have also been on the receiving end of finger pointing when we were trying to get a diagnosis on our son ... It's taken a long time to regain my confidence as a mom and a person after my experience.
    Delighted to meet you at Blissdom Canada. I'd love to keep in touch.

  21. Hi, I am a new reader to your blog and would like to introduce myself I am amother to a beautiful 3 year old. On March 4 she was diagnosed with a rare genetic disorder called Williams Syndrome.
    You are ana amazing mom, and nothing is ever youre fault, god knows your strength and only places special babies with special people. I hope you follow me and read the story Welcome To Holland as well as my story this is all new to us.
    God bless your family

  22. I will say a prayer for you, Babies with health problems are the worst. I work in the developmental disabilities field and have seen some very interesting cases. It is so sad and pathetic that Dr's and other professionals always look at the parents and blame them for some reason or another. When in reality it comes down to aspects that maybe genetic or family history linked. I pray that you will find the professionals that will give the help you need and deserve. Just keep being the loving mother you are and doors will open for you. God Bless and Best Wishes.

  23. I'm so sorry to hear about all of this "relaxing" runaround. I'm fresh out of my bad mom t-shirts, but if you ever need one I'll get a new batch made . . . then you can head them off at the pass. But seriously, very sorry for all of this. I'm glad the hunk of wax is out.

  24. Just checking in on you as I do from time to time. Would love an update if you can find a moment to write. Hope all is well in Cotta land.

  25. Hello, I have been searching the internet for anyone who possibly has the same condition - I have silent thyroiditis. If you are, may I ask how are you doing? My silent thyroiditis is debilititating.

    How long were you debilitated? I was diagnosed 08/01/10 and am over 16.5 months into this. I feel like I will never get better. My thyroid numbers have improved, but I am still glued to the couch with exercise intolerance.

    Thank you, and I sincerely hope you are well by this time. Please, I beg you to contact me at readyforwhat7 at yahoo dot com if you have any information or personal experience on this issue. THANK YOU!!

  26. This is infuriating. I can't believe that they failed to detect it :(

  27. I'm so sorry. Sounds like absolutely too much to go through. I found you via Twitter today and I'm glad I did. I'll be thinking of you and your family.

  28. I'm so very sorry that you have gone through this and continue to go through it. I don't know why moms bear the brunt of the blame for so much stuff, but there seems even now to be this kind of undercurrent of "mom is hysterical". And sometimes as is the case with you - you just know in your gut something is off. But your perseverance will serve you well as you move forward and get some help for him. He's going to be okay. Because he has you.

  29. I really hope it works out for you. I had the displeasure of living in a black mold infested basement myself for a few months in 2011 an had alot of sinus problems an was horribly sick at times. sad thing is after i moved in July the house was being rented to a family by the slum landlord. i just hope they don't have to suffer the same issues that you described. Love an laughter help to heal ... Many good vibes your way.

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