Don't be that Mom who says "Not My Child"

About two months ago, Nora had a rough time at school not listening to her teachers. She also started sucking her thumb about 4 months ago, out of the blue, at 3 1/2. Last month, we received results of hearing and speech screenings done at her school--one she failed; the other showing concern and recommending a complete evaluation. Last week, she complained of another earache.

All of those facts side by side on one page seem obviously, or at least plausibly, connected, but they happened on different days over four months, with varying degrees of salience in our daily life. The poor choices and ignoring teachers resolved after various strategies; it was a new teacher, she was testing; she needed to see that her parents supported the teacher. She also needed to work toward something she really wanted. Now, we get daily reports of consistently good behavior and listening to teacher directions. The thumb sucking was explained by lots of family, friends, and professionals as comfort-seeking and probably started as a result of seeing another child suck his/her thumb at school. Like any other information seeker, I googled thumb sucking in preschoolers and some doctor on some website advised not to make it a big deal or it could turn into a chronic habit. So, we left it alone, even though it seemed an odd thing.

During a visit with our pediatrician for ear infection #2, I asked how many ear infections Nora had in calendar year 2010. Answer: Two. It was February and this was number 2 for 2011. Number three was this past week, and it was painful. This was the first time she really complained about pain. The other two did not keep her from any normal daily activities, just a complaint shared here and there.

Then, the failed hearing screening. With it being done at her school, I wondered about the conditions. Was she tired? Did she cooperate? Her teacher handed me the results and said, "Don't worry about these, she went last and was overly tired. She was not happy to comply. I think if there was really a problem, we would know about it." My kiddo is strong willed and emotional when tired, OK.

So, my initial internal conversation went something like this: Of course Nora is fine. My child is smart and happy and she was tired, even the highly experienced child development expert said so.

Then, I talked with Geoff. What do you think? Yes, we have noticed her speech is not as clear as it could be. No, she doesn't always answer when we call her name. Following up certainly can't hurt. Information is always positive, regardless of what the actual information tells you. We should know whatever it is or be able to rule out anything we are worried about.

Then, the individual who actually screened her speech and hearing at school called me and point blank asked me if I would like to follow up on her recommendation and have Nora evaluated fully for a possible speech delay. Wow, OK, (internal thought: Do not be that mom who says "Not my child." What could it hurt? More information is always good. Could be expensive, but this is the age we need to understand any delays so that they can be resolved by the time she goes to school. She is the professional, Wendy. She will use standardized, objective tests. She is following up. Why would you ever be that parent? Say yes.) Yes, I think that is a good idea. Appointment set. We would wait three weeks for our April 12th appointment.

April 12: Nora is thrilled to hang out with me instead of staying at school. She knows it is a special day and that she has an appointment. We get coffee (her a hot cocoa), we get a doughnut. We don't rush, I let her pretend to drive in the car. We go for our appointment and she is bright, lovely, and polite. She answers the questions and knows a lot of words. I try to make out what the answers being recorded on the score sheets mean. I enjoy watching my daughter answer so many questions correctly. She is smart. I knew that.

Then, I offer to the Speech-Language Pathologist: She also failed her hearing screening. And so, she offers to do it again. Perfect, now I will see the conditions for myself. Having shared with her my suspicion that something might be causing chronic ear infections, she says: "If her middle ear is functioning properly, we will see a mountain shaped line on the machine. If there is fluid in her middle ear or it is not functioning, the line will be flat." I stare at the machine. I can tell she is giving Nora second chances to correctly identify the sounds she is making the machine deliver to her earphones. Nora raises her hand timidly or not at all. She looks at me and I smile, encouraging continued cooperation. Left ear: flat line. My heart sinks. It's Ok, do not show anxiety. Smile for Nora. One more ear and we can go and play again. Right ear: flat line. I feel tears coming to my eyes, but I push them aside and tell her what a great job she did. I now know what uncertainty looks like in my child. She didn't hear the frequencies. She raised her hand guessing rather than hearing. Do not panic, Wendy. It will be Ok. Wait until she tells you the results.

The evaluator leaves us for 15 minutes or so while she scores the tests she gave Nora. I am very eager to get the results, but I immediately get on the cell phone while Nora colors a picture to follow up on the referral to an ENT physician I requested two weeks ago at the pediatrician's office. They simply missed it, she explained. OK, no problem, do it now. I call and ask for the earliest available slot. The appointment is 10 days from now, but I take it even though it is during her regular nap time. We want first available. OK, one thing done on the mental check list.

The evaluator said Nora scored at the top on two of the four tests (range of typical for her age was 7 - 13. Nora scored 13 on two of the scales). Sigh of relief. OK, on test number 3, she scored a 10 (same scale, completely typical for her age). Another sigh of relief. Test number 4: range is 85 - 115 (just like IQ) and Nora scored 93. Typical again. This last one, though, was interesting. Given what I had shared about thumb sucking starting (very atypical for a 3 1/2 year old), chronic ear infections, and my plan to follow up with an ENT, plus the failed hearing screen; the evaluator put Nora in the category of being "at risk" for a developmental delay in articulation of communication. This means that she does not make all the sounds correctly while talking as we would expect for a child her age. Sounds can be substituted, left off, added or changed. These errors may make it hard for people to understand her. Ok, yes, I guess I had noticed that.

Then, she said that Nora did not demonstrate hearing any of the highest level frequencies during the hearing re-screen. This is interesting because the sounds she is not making correctly in her speech are all heard at these highest frequencies. She is making errors most likely because she cannot hear the sounds distinctively. HOLY SHIT! (Sorry if that offends, but that is what I thought). And, what is more interesting is that it is likely she started sucking her thumb to alleviate the pressure built up by the fluid in her middle ears. HOLY SHIT. Yes, OK, uh-huh, OK, will you write this down for me? Yes, she will send a complete report. She recommends what I already have planned. Do not do anything about thumb sucking at this time, she will probably stop once her ears stop hurting. Follow up with us if speech does not improve in 3 - 6 months. Oh my god, I hope her ears stop hurting. I hope they can be helped. I hope I have not caused this by using Q-tips to clean her ears. She does not need therapy for her speech. She does not have a delay or an impediment or a communication disorder. Oh my god, please let this be fixable. If it isn't, its OK, but please I hope her ears stop hurting.

So, we completed the appointment and I took Nora back to school. She was sad and obviously thought we would be together all day. Next appointment, I will take the whole day. I should have called off this day. But, I needed to call Geoff and tell him all of this. I also needed an emotional break. She, I could tell, needed a nap. But, I did tell Nora about the next appointment, which she got excited about. Maybe we'll get another doughnut. Maybe we'll laze around before it and hang out at our favorite coffee shop reading books. Maybe, I suggested, we'll even invite Daddy along.
OK Mama, she said. That is a great idea.

I find I am struggling to say exactly everything I am feeling (despite the enormous length of this post). I have not talked about this at work, which is rare for an open book like me. I am proud that I followed a tiny inkling. I am glad I was decisive and asked opinions of all kinds. I am so proud that Geoff and I were together, supporting shared decisions, on this, from the beginning. I am mad as hell that I didn't put the pieces together sooner. Why didn't I know immediately? I know that I am against the over use of antibiotics of our very young and that immune systems must be tested to grow strong, even if it means feeling the symptoms of illness. But, I also fear that real, life long, damage has been done. Or worse yet, that something I did or that I failed to do, caused this. I worry that I have punished her for things that she could not control: been exasperated at a loud voice or a very, very soft one; raised my voice when calling her name a third time; or sharing disappointment at ignoring her teachers when maybe she just didn't hear them. Even if all the fears become a reality, I do feel good about not being the mom who said Oh, not my child. There is no way she failed a hearing screening because she cannot hear. There is nothing we would learn from a speech evaluation. No, no thank you, there is nothing I need you to tell me about my child.

Now, we are post-ENT appointment. Dr. Iain Grant, a lovely and very experienced guy from New Zealand, who couldn't understand Nora either when she introduced herself as "Nora-saurus." He took one look at the Audiology results, asked us about her history and present confounding issues, and recommended tubes. Really? My brother had a horrible time with those. Well, it is that or you can try another round of antibiotics and see if it resolves. You would likely make it through summer without another ear infection, but I am not even sure of that. Her hearing is way below what it should be for a child her age. It is a common surgery with very uncommon chance of complications of any kind. Not doing it may result in more ear infections, further reduced hearing loss, or just prolong the cycle of infection/resolution/infection. It was settled then. Nora will have tubes placed in both ears on May 9th.

For a week, I didn't tell anyone. I digested it. Surgery. Actually, a 15 minute procedure, for which she will completely asleep, treated with Motrin, and released. We have no history of anyone in the family having an adverse reaction to anesthesia. That is the biggest risk for kids, but even that doesn't seem a worry for the veteran doctor. So, three separate pre-op phone calls later and we know everything except the time of the surgery. To distract from any worries, I just daydream about what it will do for her and why it is necessary: reduce pain in her ears, reduce likelihood of chronic ear infections, increase her ability to hear clearly, improve her articulation, and relieve the kiddo of any uncertainty she has about communicating with people. Yes, that is why information is never a bad thing.

On Monday, if the appointment is late enough in the day, I think we'll start our day by getting a doughnut. Yes, I think that is a great idea.

This is what happens

when dad takes the kids to the park solo.

We had a nice walk and were playing at the new park 2 blocks from our house. I was pushing Nora in the swing and Jack came running towards me, tripped and his head landed on the pole holding up the swing set. I knew it was bad and not his normal fall (which we have gotten used to seeing), he was crying and trying to scream when I scooped him up. I turned to tell Nora it was time to go, argued with her for 20 seconds and when I turned back to Jack it looked like he was trying to smuggle a golf ball in his forehead.



Nora was still not happy to leave the park despite his obvious injury, so it was an interesting 2 block walk home to Mama. when I took the picture of Jack, Nora asked why I didn't take one of her. "You want a picture of you pouting while Jack is hurt?", I asked. "Yes!" So here is a picture of Nora pouting that we had to leave the park early even though her brother suffered a head contusion.


She did soften up a few minutes later and suggested we give Jack a "magic lollipop" to make his head feel better. We let Jack pick out a grape dum dum and after a few licks, he responded that his head did feel better. Magic lollipops, who knew?

We obviously kept an eye on Jack and he seemed back to himself before bed. He was ornery and good to go the next morning and hasn't shown any ill effects. His bump has now turned blue/purple and is draining around his eye. If the blue keeps going to his eye he will look like a boxer in a couple days.

Pictures from the zoo

Thanks to Lindsey and Pam for taking them and sending them to us.