By The Wiz
My son had an appointment to go to an audiologist today. This is FINALLY, after a speech therapist told me to go to one, after I had to wait two months to get into the pediatrician so I could get a referral, then 3 weeks to get into the audiologist. Basically, I have been anticipating this since early December. The preschool screened his hearing again last week in anticipation.
First of all, you have to know, the day after I went to the pediatrician (where his hearing was also screened) the audiology center called me. They gave me explicit instructions as to where to go, it’s not in the hospital, it’s in this building near the hospital, but you have to get there in this weird way, and of course we’ll be sending you this in the mail, but we like to go over this verbally with the parent first, because it’s so counter-intuitive, how to get there.
Well, nothing came in the mail, but I wasn’t too worried about it, since I had written everything down, and found my way into this art building for this all important appointment. I walk in, and the first thing they say?
“You’re in the wrong building. You have to go into the hospital.”
“You mean the hospital that they explicitly told me not to go to?”
“Yep, that’s the one. They moved. This building is too loud for those screenings. Here’s a map. I’ll call them and tell them you’re on your way.”
So I find the hospital, wander around, and land in an audiologist’s office. They were clearly expecting me, which I was glad about, since this appointment was supposed to be an hour long, and we had already burned up half that time in logistics. I was glad to be seen at all, although I was fully prepared to pitch a momma bear fit if they rescheduled.
“So, why are you here? Did he pass his newborn hearing screen?”
I launch into the CAPD spiel. Yes, he’s passed all hearing screenings, including the 2 he’s had in the last month.
“This is a CAPD appointment? I can’t do those here. The equipment for that is in the other building. Did you tell us this was supposed to be a CAPD appointment?”
I couldn’t help it. I laughed out loud, along with a serious eyeroll, because really….what? The Loud Building has the equipment? And hey, the pediatrician made the call, and if he didn’t say CAPD, I don’t know what to tell you, because he knew full well that’s what I wanted.
“I don’t do CAPD screenings. There is a specific test for that, and I don’t do it. Have you contacted the University? Now, do you know if he passed his newborn hearing screen?”
Why would I have contacted the University? Yes, he can hear. He passed the newborn hearing, no problem.
So, what do you think happened? After all this anticipation, all this waiting, all this readiness to finally get an official diagnosis so I can get an education plan put into place because kindergarten is not that far away, my son gets ANOTHER FREAKIN’ HEARING SCREEN, because, you know, he might not have passed his newborn hearing test. I fully think she did the screen just so she could do something. Guess what? He can hear.
She then calls the other audiologist, talks for a while, turns around and drops a bomb.
“We can’t accurately diagnose CAPD until age 7. He’s not cognitively ready to take the test until then.”
??????????? Have any of you heard that before? Because I would really like to know.
“And, you know, there’s no real therapy for it. But, I asked if she could call you tomorrow when she comes in, and she’s willing to do so.”
Now, isn’t that special?
I can just hear the other audiologist on the line saying “I’m not going to screen a 4 year old, and why should I, since there’s no developed therapy specifically for it, and why is she there?”
So, basically, the other audiologist gets to call me tomorrow to talk to me, as a way to smooth mum’s feathers, I’m sure, and let me tell you, I am not looking forward to that phone call anymore than she is, and I highly doubt she’ll call me. Anyone want to place bets on that one?
So, I fired questions at this poor woman who does hearing screens all day long, and basically knows nothing.
“If this can’t be diagnosed until age 7, don’t you think somebody, from the speech therapist to the pediatrician, could have mentioned that? It might have saved us all some time here.”
“Yeah, well, they don’t really know.”
Yeah, well, you didn’t either, since you said nothing about it until you chatted up your colleague there, and you were hoping to send me to the University for this test, but why, I don’t have any idea.
“He’s a high functioning kid, he sat and did everything he was supposed to, I’m sure he’ll be fine.”
Yeah, I’m sure he will, since he’s raised red flags to everyone who spends any serious amount of time with him. But yes, he sat in your little booth and did your screen. He’s an expert at hearing screens by now. Too bad that’s not what they do all day in kindergarten.
I was out of there within 15 minutes. Why did they give me an hour block of time for that waste of resources? They just thought I would magically have trouble parking? Methinks the left hand knoweth not what the right hand doeth over there, and now I am left with….what? Waiting for him to turn seven so they can screen him and then tell me there’s no therapy?
But tomorrow I get a nice courtesy phone call from somebody, and I am solely convinced the only reason for that is because I was in the room while the first audiologist made the phone call, and she was grasping for something to tell me.
Seriously, this poor woman, she was truly set up to fail here. I don’t blame her, she was told nothing about what I needed beforehand. I didn’t want a hearing screen, I didn’t need a hearing screen, but that was all she could do, that and beg people to call me. I’m sure it was a blast for her as well.
Then on the way home, I stopped at Pier 1 to return a drapery panel that I thought might work in my house (it didn’t, hence the return) and the receipt blew out of my hands and now I am out 50 bucks for a drapery panel that I don’t need. I love throwing money into the wind like that. It makes for excellent karma.




Crap. What a sucky day. I’m sorry.
Comment #1 by Tracy MFebruary 26th, 2008 at 5:55 pmWiz,
my boy had CAPD testing the month he turned 4. it was hard to find somebody who could do that because yes, they normally can’t do the tests until 6/7/8. I had to call a while to find a Dr who does, and we proceeded knowing that her accuracy would depend totally on his compliance and how much of the test they could get through. but it worked out and he was diagnosed.
A good CAPD book is “when the brain can’t hear”.
take care!
Comment #2 by cchrissyyFebruary 26th, 2008 at 6:08 pmoh, here’s the Dr’s site. http://judithpaton.com/
Comment #3 by cchrissyyFebruary 26th, 2008 at 6:13 pmas you see, there is auditory therapy. She wrote lots of helpful classroom accommodations for the IEP.
That site is awesome.
My main problem is, I just don’t think a K teacher is going to believe the mother without an official diagnosis. She might just think to herself “You are in denial, your kid is just slower, and you’re trying to make up a reason.”
And hey, maybe I am in denial, but it doesn’t feel like it. Although, I suppose one would say that if it was denial. And now I’m just being loopy.
So do I keep calling around? Talk to the pediatrician again? Wait and see? I just don’t know what my next step should be. What do you think?
Comment #4 by The WizFebruary 26th, 2008 at 6:21 pmMy SIL is an audiologist who is currently working on her Ph.D. She works at the Univ of Utah medical center and also has a 5 year old daughter in speech therapy & so is very in-tune with kids issues. I would be happy to ask her any questions you might have or arrange for you to contact her.
Comment #5 by CarInUtahFebruary 26th, 2008 at 8:18 pmJust drop me a line on my email….
Oh, man. I wish I had some kind of spectacular advice or experience to share with you, but I’m comin’ up empty.
I just feel bad that you have to endure all the rules and crazy regulations. It’s hard enough as it is, without all of that on top of it! Good luck, okay?
Comment #6 by cherylFebruary 27th, 2008 at 5:07 amWelcome to the world of trying-to-help-your-child-with-special-needs!!!
I’d love to say it gets better….but it probably won’t be the last time you will have to deal with this stuff. But I do hope it gets better and it WILL be worth the run around to get a diagnosis.
Run. Outside. For An Hour. I might have killed someone by now if I hadn’t started exercising (at least on the very bad days) after my son’s diagnosis.
Comment #7 by JenFebruary 27th, 2008 at 5:16 amwhat I’d recommend is
1) calling audiologists and asking if they do CAPD testing on a 5 year old, and if they say no, ask who else you should try. and just keep calling.
2) get on the yahoo groups for your metro area for kids with speech or audio and developmental issues. Search the post histories and then post to ask. somebody will know where to go.
3) I don’t know your kid, but if you think a full developmental and psychological assessment is in your future, find that good Dr now and get started waiting. At least around here, waits for a first assessment are 6-12 months. I’m throwing it out there because you (or somebody else) may have a gut feeling that there’s more to his whole story. A comprehensive developmental assessment can bring so much direction!
Comment #8 by cchrissyyFebruary 27th, 2008 at 6:15 amDoctors suck. They do. If you find a good one, latch on for dear life.
Comment #9 by Susan MFebruary 27th, 2008 at 6:18 amOh, that is insane! I am sorry that you are having to deal with the crap of doctors who don’t seem to know what they are doing. Things have to get better…eventually. *hugs*
Comment #10 by fluffychickyFebruary 27th, 2008 at 6:22 amSigh… why is this normal behavior in the medical community? SERIOUSLY? Why is it so rare to hear of GOOD doctors???
Comment #11 by MelissaFebruary 27th, 2008 at 8:06 amThank you so much for this post! I had kind of heard of CAPD from my mom, she’s an audiologist. She would check my hearing and it would be perfect and yet I would complain to her that if there’s background noise I can’t hear!
But, nothing came of it.
I always hated going to social things at restaurants, I couldn’t hear a thing people were saying and couldn’t be social. I’d often end up nodding and smiling…
So, today, I read your post and put some 2+2’s together for my son!
I believe he has CAPD and I can finally start confirming that I have it too!
From my experience, if I want to “hear” someone I make sure they are looking right at me and if it’s noisy enough I tend to read lips. If someone tries to give me directions I make sure that they tell me one at a time and I write it down.
We are going to start writing stuff down for my son (like household chores that he keeps “forgetting”) and I’m going to make sure the radio is off and I’m looking right into his face when I talk to him or ask him to do something.
Comment #12 by roster007February 27th, 2008 at 8:13 amMore quiet in the house while he does his homework too.
My son is 10 so it might be easier to work things out with him because he can read…
but, hopefully some of things can be useful to you.
Sorry about that horribly stupid experience… that’s all it is, stupid.
Good luck figuring it all out. I’m going to be studying and figuring it all out too.
I’m impressed that you wrote that whole post without a single swear. I could not have done that.
Comment #13 by whatserbucketFebruary 27th, 2008 at 8:55 amHang in there.
Wow. What a sucky experience. we were at the audiologist for #1 and I was chatting with a mother who’s son was getting his CI (cochlear implant) turned on for the first time. There were family members there & everyone was so excited. The audiologist came in & told her that they didn’t have the processor & wouldn’t be able to do it for another week. Those people drove all the way from Iowa. I can only imagine your frustration.
Comment #14 by HRHFebruary 27th, 2008 at 9:43 amI say if the woman calls you, you ask her why the other audiologist didn’t know that about the age limit. If you have to get mad - then get mad. You are your son’s advocate, fight for him!
I haven’t been able to read all the comments so don’t know if this has been said yet. As I have no experiece with CAPD my daughter did have speech issues, with pronouncing words, using the correct pronouns and such. At 3 I was able to take her to our public school and have her tested by their speech thearapist and diagnostition. Is that available in your area? Maybe try that.
Comment #15 by ValerieFebruary 27th, 2008 at 10:51 amThe speech therapist did test him. That’s how it all started. He didn’t qualify for speech therapy but she thought he had CAPD.
Comment #16 by The WizFebruary 27th, 2008 at 10:51 amI don’t know what to say. Let’s try this quote from my FIL: “What the HECK?!”
Comment #17 by Aunt LoLoFebruary 27th, 2008 at 11:29 amI wouldn’t be surprised if they were misinformed. You should try the local Autism Spectrum group for testing, because CAPD is a comorbid disorder for ASD, and I’m sure they would have resources for you. You can for sure get developmental testing prior to 7. My son was given the Asperger’s tests even though they are designed for 7 year old or older. I think they were just feeding you some B.S.
Comment #18 by snow whiteFebruary 27th, 2008 at 11:55 amMaybe you have addressed this in previous posts, but have you considered homeschooling? Sometimes I feel home is the best place our kids with special learning needs can get what they need.
I can tell you are extremely worried about how kindergarten will go for him and how the teachers will respond to him.
I know a lot of people are overwhelmed by the thought of homeschooling but it is doable. There is also a lot of support out there with other homeschooling families.
Comment #19 by HeathermommyFebruary 27th, 2008 at 1:34 pmI think I remember learning that I couldn’t test for auditory processing before age 7. It is really frustrating trying to get your son properly diagnosed.
Comment #20 by jksFebruary 27th, 2008 at 3:13 pmMy son never was. He had a verbal apraxia dx at age 2 and 9 months.
It really is hard to diagnose children. And it doesn’t seem to make a difference in therapy either. As a parent, you simply keep looking for what he needs help with and then tackle each “symptom.”
Schools don’t diagnose, they simply provide services based on if he has weaknesses.
My son received early intervention and had an IEP thru the beginning of 2nd grade. He started kindergarten with an IEP.
I have nothing but GOOD things to report about my school’s treatment of him. Simply knowing he had a language issue made sure that he wasn’t treated. I loved his teachers, his SLP and the school psychologists.
My son is 8 now. I’m guessing his best dx would be Specific Language Disorder - difficulty with receptive and expressive language. If there are distractions or noise he understands less (thus my brush with aud. proc. disorder research).
I consider myself to be very pro-active about his development and would be happy to answer any questions.
Sorry, my incomplete sentence should have read:
Comment #21 by jksFebruary 27th, 2008 at 3:15 pmSimply knowing he had a language issue made sure that he wasn’t treated like he was ignoring instructions, or couldn’t do the work, or a behavioral problem, etc. His kindergarten teacher and 1st grade teacher I could tell really looked out for him in the class.
I’m an Au.D. (doctor of audiology) student in my 3rd year of my 4 year program, and I completed my CAPD class last year. The reason they say it can’t be done until 7 years of age is because the auditory pathways are still developing up until that point (or so it’s been said in the research). Also, most of the tests that are done in the CAPD battery aren’t normed for children under 7, so it’s difficult to interpret for anyone under that age. There is one test that’s normed for children as young as 5, but I know that doesn’t help because your child is 4.
Plus you should know, the full battery of tests can take a while, and sometimes has to be done in several appointments. You also mentioned that there’s not a lot of ‘cures’ that are available. Really all we can offer right now is an FM system and preferential seating in a classroom.
There’s a book by Terry Bellis called ‘When The Brain Can’t Hear’. You might like it. It’s all about APD.
Good luck!
If you have any questions, I’ll take a shot at it, or I may be able to point you in the right direction!
Comment #22 by ClareFebruary 27th, 2008 at 3:53 pmOkay… I get APD (auditory processing disorder?), but what is the CAPD, and what is IEP??
And what symptoms does your son have that makes you think he has this?
Comment #23 by GingerFebruary 28th, 2008 at 12:34 pmCAPD is Central Auditory Processind Disorder. Same thing as APD. Two different names.
IEP. Individual education plan. The main thing I want is a mike for the teacher, hopefully they will give me this even without an official diagnosis.
symptoms - prolonged response time to questions, (longer than other four year olds) “checking out” when there is a lot of background nosie, seeming to “ignore” people when too much is going on
Basically, it seems like he can’t distinguish between noise and speech, and so doesn’t know when to respond to a teacher or parent if there is a lot going on.
Also he has some speech issues that may or may not be associated with the way he hears.
If you go to that site linked earlier, he has basically all the symptoms in the first category.
Comment #24 by The WizFebruary 28th, 2008 at 3:50 pmIn my previous post, I meant Specific Learning Impairment (SLI). Since he is doing so well these days, I’m hardly ever on the internet or discussing specifics about him.
Comment #25 by JKSFebruary 28th, 2008 at 7:22 pmWhen my son, C, was 4, he was still using 3-4 word sentences. His first word was at 2 1/2. It is AMAZING how much a child can develop even with a language disorder.
My advice is to get him tested by the school district ASAP. Because in order to “qualify” for services, he has to be in the bottom 10 or 20%. And since you are busy helping him he may not be very low by the time he gets to kindergarten.
C tested at less than 5 percentile at age 3 in language, as well as less than 10 percentile in social and cognitive. When he entered kindergarten he was 6 weeks shy of 6 and it was time for retesting. I turned down the cognitive (I said I didn’t want to be fighting that inaccurate low IQ number forever) so they did straight academic testing on reading and math where he came out IQ 100 and 115. He actually technically didn’t qualify for speech and language, but was close enough that the SLP felt his speech issues were enough to keep an IEP. Two years later he tested 50 percentile and above for speech and language.
So, as you can see the years of early intervention thru the school district and private speech therapy and my own research and work that I did with him made a huge difference.
The fact is that C speaks slowly and is harder to understand sometimes (his tonal quality is the opposite of “sharp”). His big sister thinks he is a really bad listener. He takes a long time to speak.
But, so far he feels like a smart kid.
One thing I started doing was teaching his strengths, not just working on his weaknesses.
He is excellent at math and I supplement his math learning so he will always feel like the smartest math kid in the class. I worked on reading from early reading skills to later reading skills to make sure that was smoothly. He isn’t in the top 10% but he’s nicely above average in reading.
He loves science so I have fed his obsessions with non-ficition books (I had to read them to him when he was little) like space, fighter planes, dinosaurs, boats etc.
Writing is now my main concern because he has not come along. Boys are notorious for being behind in fine motor but I am actually attempting to get an occupational therapist to examine him because I don’t want him to have to continue to fail in this area.
So, I wanted to tell you that for C, he has not had any “you are stupid” reactions at school despite being slow of speech.
I worried about oral instructions, but I think PE is actually the only problem. I never spoke personally to the PE teacher (but I did ask his teacher last year to). But again this year his report card said “developing skills, could listen to instructions better.”
His 1st grade teacher said that if the instructions were more than one step, he sometimes acted lost and unsure.
His 2nd grade teacher has not said anything negative besides handwriting being poor. His schoolwork comes home completed. I need to guide him on his homework at little more than big sister.
I guess I want to give you hope. I don’t regret a single internet page of reserach into autism, ASD, apraxia, SLI, APD, etc. They all gave me insight into where things were breaking down and why he might not be developing normally and what I could do to help him. And all those things totally helped.
Sometimes I see that his weaknesses are actually strengths. Take the cub scout raingutter regatta. They made little boats and had to blow on them to make them go in the raingutters. I told dh, “How is he going to do that? This is a kid with mild oral motor planning difficulties. He couldn’t blow out the candles on his birthday cake or blow bubbles until his 4th birthday.” So I told dh he had to practice for the next week. So dh practiced with him and being the engineer he is, told him where on the boat to blow. Guess who won the whole thing? C. Probably the weakest blower, but the most effective blower because his dad made sure he knew where to blow to avoid having the boat go off kilter or hit the side, etc.
THAT is what you are able to do for your son! And while I remember the greiving and the scariness of a dismal future (that inaccurate IQ test at age 3 was pretty heartbreaking) and the exhaustion of worrying and researching and trying to do what you can….I am very proud of what I have accomplished and it is part of what makes me love my job as a mother and never feel like I could have accomplished more doing something else.
Wiz,
Comment #26 by JKSFebruary 28th, 2008 at 7:50 pmYou’re going to be tired of my comments. But I am giving birth to a boy sometime around March 20. So, I just realized that I’ll have a spring boy…..
When I got pregnant with baby #3, I was so worried it would be a boy and I’d have to worry about language disorders. She was a girl though. C was only 3 1/2 when I got pregnant and he could barely speak. It wasn’t planned because I still felt like he needed me. I was signing everything I said at that point to see if that would help his language development.
This one is a boy. I’m not as freaked out, of course, but I guess I’m sort of expecting him to at least have mild late talking issues. I mean C was such a severe case when he was little, I just feel like it can’t be nearly as severe as with C. It will be just more normal boy development.
I tell you my 4 year old girl still surprises me with the way she talks. The school district had a great class for parents on language development and what parents can do, so I did so many things “right” to encourage language with her, plus she doesn’t have a language disorder so it is still seems freakishly advanced to me even though its just normal.
I’m having another boy, too. So we’ll have to be on the lookout for more ASD. I hope not, though, because my first son was a hard (irritable) baby, and my girls have been such sweet babies. It sounds awful, but I’m not sure if I could handle another hyper-sensitive colicky-acting baby with 3 other kids. Ack.
Comment #27 by snow whiteMarch 1st, 2008 at 5:13 pmWhen I brought up the fact that my oldest daughter has APD to Parker’s ENT, he told me to schedule an appointment for her with HIM.
Maybe getting an ENT on board may carry more weight?
As far as the school things goes? Lucky you. I sleep with a Principal.
He can help you with these issues.
Comment #28 by Tammy and ParkerMarch 3rd, 2008 at 6:49 pm[…] My son gets screened for CAPD again next month. Remember last time? I have high hopes that this time will be better. Apparently there is just one doctor that does the screening, (maybe 2?) and I have a friend in the PHd program at that hospital who told me that, and she spoke to the doctor for me. The Dr. then called, and said she would handle it, and voila! Scheduled. With the right person!! So, basically the secret for handling special needs (even relatively minor ones, like my son’s) is to know people in the right places. Sigh. I’m looking forward to it, though. Hopefully I can get some more info. […]
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