Thursday, March 27, 2014

When special needs moms know better than the experts do


"The speech therapist said because of his lack of comprehension, he wasn't yet ready for a speech device," a mom I recently met told me. Her five-year-old son has developmental delays, and is nonverbal. He was sitting nearby, poking around on an iPhone.

"Have they tried one with him?" I asked. 

"No," she said.  

Clearly, this child was into technology. Earlier, I'd seen him playing with an iPad.

"You should press the therapist on that," I said. "These days, you can simplify devices and speech apps so they work for kids at a really basic level of communication, just even saying 'yes' or 'no.'"

In a second, I was flashing back to the time when Max was 5 and I told the head of the speech department at his old school that I thought he should try a speech device.  

"He's not ready," she said, point blank.  

"How do you know if you've never even tried one with him?" I asked.

Dave and I ended up getting Max evaluated for an augmentative communication device, and those experts decided he was ready for one. He got a Dynavox; it cost close to $2000 and the district paid for it. This was before the iPad came along, and that thing was a clunker. Max couldn't even pick it up. I hated programming it. Still, for the first time Max had a voice—and it was because I, Mommy Expert, said so.

Soon after, I pulled Max out of that school. I'd long felt they weren't progressive enough and the resistance to the speech device was the last straw.

If there's one thing parents of kids with special needs know, it's that we need experts—many, many experts—to help our children. And if there's another thing we know, it's that the experts aren't always right. 

That speech therapist was operating out of ignorance. She didn't have experience with communication devices, which she eventually admitted. Still: One of the benchmarks of a good therapist or teacher is being open to change, along with parental input. And while it shouldn't be our jobs to push the experts to be more innovative, sometimes we have to.

Over the years, I've heard from parents who thought their speech, occupational and physical therapists weren't adequately engaging their kids. I usually ask the same questions:

1) Have you said anything?
2) Have you made suggestions about what would improve things?
3) Do you have another therapist you can switch to?

Experts know their stuff. But parents know their kids best of all. And even though it's tricky to tell when something isn't right because, after all, they are the experts and they have their degrees, you need to trust your gut. And feel comfortable speaking up, too, though I know that's not always easy, either. Ultimately, we are our kids' best advocates. I grew into it over time, but I knew it from the first weeks of Max's life.

The doom-and-gloom pediatric neurologist had left me despondent about Max's future, and I told the NICU social worker that I didn't want to talk with him again unless he could find something, anything positive to say. As bewildered as I was by what had happened and by this new medical world I was navigating, I realized that I needed some hope to hang on to for Max's sake.

"What good will it do Max if I'm a mess?" I said to that social worker. "That doctor needs to stop depressing me more than I already am."

"You're going to be a great champion for your son," she told me the day we left the hospital with Max.

We are all champions for our children. And when an expert's behavior is wearing us down, when we hear "No" or "Not possible" or "Not ready," it's time to question, push and persevere.

If we don't, who will?

19 comments:

  1. So true! We are currently experimenting with various communication tools and methods. The only way to know if she is ready is by trying.

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    1. Joyful Journey....
      "The only way to know if she is ready is by trying.". I can't but agree!! ;-D
      --Raelyn

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  2. One way to help find the support you need for your child is to create a parents group within your district. Parents can share experiences, support and resources, and learn how to most effectively advocate. We also work with the district's Special Education Advisory Council and school board to address needs that effect many of our kids. Having people around you is empowering, and we learn a lot from one another!

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  3. Those naysaying "experts" are saying everything's impossible. Have they seen these blogs?

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    1. Anonymous....
      Those naysaying "experts" do not understand that God watches over and deeply cares for His precious children!! When I was a baby born with multiple birth defects, they thought I'd be blind/deaf. Like Helen Keller. Well, think again!! I may struggle with having learning disabilities, but my eyes and ears function just fine, thank-you very much!! ;)
      --Raelyn

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  4. Ellen....
    "Experts know their stuff. But parents know their kids best of all.". So true, so true, so very true!! That goes the same for medical doctors, as well, I'm afraid.... ;)
    --Raelyn

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  5. Once again you have written a wonderful post - you rock!!!

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  6. WOW Great post! So many times I think as parents we can sell ourselves short because we may not have the advanced degrees & more letters after our names.

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  7. BRAVA, Ellen! EXCELLENT! I can remember our son being a newborn, and being taught by our hematologist's office how to do triage and become the experts on him. This same hematologist then spent the next 13 years ignoring us and being extremely dismissive. So many times we ended up being right in the end. We're very grateful that she retired this year, and was replaced by a more responsive doctor. Bottom line -- Mama usually DOES know best!

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  8. But parents know their kids best of all, not necessarily my mom used to say that the person who knows themselves best of all is the child. Moms and dads don't always know what their children are thinking about especially if they are nonverbal.

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    1. Max was nonverbal for most of his first few years—and not that communicative. So no matter how well he may have known himself, he wouldn't have been able to express it, as may be the case with young children who have special needs and older ones, too. Which is why they need their parents as their spokespersons.

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  9. When I was entering kindergarden(intial CSE) for some reason the CSE chairperson did not think I needed an FM system (it is to help with hearing loss) because my diagnoses was recent. My mom fought and fought even bringing my audiologist to a meeting. I did get an FM system on Halloween and since kindergarden I have used one.(That paticular one was "retired" at the end of 8th grade.) And since fall of 2012 I have had the Phonak(sp?) Easylink+. By the way the CSE lady retired at the end of that year and was replaced an awesome one.

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  10. Interesting! I heard the same thing about my son at the age of three he wouldn't benefit from speech therapy or ABA because of a lack of comprehension. One year later after we put him in a NPA he went back to school verbal (speech therapy) and learning (from ABA). Everybody was shocked. My point being; don't EVER let anyone make assumptions about what your child is or is not capable of. It never hurts to try!

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  11. There was a time when just listened and obeyed whoever the expert was. Then I learned to be a mom. By the time my special needs daughter was three, I was an expert at stepping up and advocating for what I knew was best for my "complicated" child (moderate CP, cannot speak, not deaf, signs fairly fluently). Thanks for helping others ask the questions they should always be asking!

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  12. YES! YES! YES! Spot on blog, Ellen! Thank you for reaffirming what we have felt for the past 4 years!!!

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  13. Thank you so much! You are absolutely right. I LOVE your blog and am always so excited to see new posts.
    When my daughter was a baby, before we knew about her very serious medical condition, she had developmental delays and we sought services from the school district per our doctor's instructions. They treated us TERRIBLY - went behind our backs to use devices we objected to, asked invasive and inappropriate questions about our financial situation (which WASN'T an issue at the time!), etc. Eventually, we quit with the district and found private therapists - more expensive but MUCH better to us. I never told the district why we discontinued services; I didn't want to make waves, you know? But after reading this blog, I decided to contact her old care coordinator and explain exactly what happened. Thank you for giving me the courage to do that! And thanks for the excellent post, too. Have a great day!

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  14. As I heard one pediatric Prof. tell his students "when all else fails, look at the patient"
    Many experts and doctors just ignore the person(s) in front of them.
    This one didn't. He also put a special emphasis on listening to what parents have to say

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  15. First let me say...I'm on your side, you know your child best and you are their best and many times, only advocate. My husband and I are both physicians and we get in heated debate frequently about when to do what test and as I was reading your blog, I was thinking here's another example and I was wondering what your argument would be. In your blog you said the "expert" said Max wasn't ready for a speaking device, you pushed....and you got it--which cost the district (ie tax payers) $2000. So my question to you is: Hypothetically, if said expert knew of guidelines (that were devised based on research statistics) that said in order for a speaking device to be helpful the child had to be over 5, could say 50 words, and babbled as if trying to communicate. And if the child didn't meet these criteria there was only a 10% chance that a speaking device would be helpful. Knowing those totally hypothetical details, would you still argue for a speaking device if your child didn't meet the criteria? My argument would be and always is, if its MY kid I want the device because there's a 10% chance. His argument would be don't try the device unless the child meets the criteria (and as a dig to me) he'd say its physicians like me who drive the cost of health care up because we offer tests and devices to people who don't necessarily fit all the criteria and by driving the cost up, I'm preventing a large portion of people from getting any care. So while I may help 1 in 10 kids, I'll also likely prevent one kid who qualifies for the device from getting it because he can't afford the Dr appointment. Soooooo knowing 90% of parents comes to the doctor armed with info they printed from the internet insisting their child is that 10% what would you do if faced with this decision? and sorry my comment is so long!

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    1. So glad you stopped by, and left this comment. This situation happens not to be so black and white (i.e., there really are no criteria) and as it turns out my son was ready for a device, and thrived on it. So in cases in which there's no proven research on which to base an answer, as in this one, I think a second opinion is in order. If the augmentative communication specialists who did the evaluation said Max wasn't ready for a speech device, I would have listened to them (truly!) but at the same time pushed to find other solutions. IF there were definitive criteria that Max hadn't met, however, as a parent I would have still pushed for it. I just am unable to imagine how I'd handle this if I were a doctor, my thoughts in this case are completely colored by life as a special needs parent. Also: I know misinformation is rampant online, but many special needs parents happen to be really good at doing their research...because we have to do so much of it! I don't think we're the type tend to show up at doctor's offices insisting we've found THE answer. I've learned that treating our children is often a dialogue not a directive.

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Thanks for sharing!