Sunday, November 8, 2009

The Annual Stress-Out

Testing stresses me out, but the kids could care less

Every year, children in the early intervention system are required to have a full evaluation of developmental skills. This is important, because it helps with setting new goals and in monitoring developmental growth over time. Unfortunately, it also totally stresses me out.

If the little guy scores poorly, then I am afraid that we aren't helping him enough and for the implications of a language delay on his future. If he scores too well, then I am afraid he will get kicked out of the system entirely. For a kid with congenital hearing loss, getting "kicked out" of the system could be devastating, because without ongoing therapy the child will lose ground and begin to slip behind their hearing peers.

Nolan recently had testing, with the Preschool Language Scale-4 (PLS-4) and the Arizona Articulation Proficiency Scale-3 (AAPS-3). When the testing was completed, our speech therapist told me that his receptive language score was 117. I took this to be the percentile, and my panic button was immediately triggered. For those who missed the third grade, the 50th% is average. This would have meant that Nolan's receptive language was amazingly high.

Yes, I was thrilled that my little word-hound was doing so brilliantly well (his expressive score was 108), but we are coming up on his CPSE (Committee for Preschool Special Education) meeting for entering the school district. Early intervention allows a child with hearing loss to remain in the system without a delay, because the hearing loss has a high probability of causing a delay if untreated. The school district system doesn't work in the same way: the child must have a demonstrated academic delay in addition to their disability to qualify for services. Otherwise they are shunted to a "504" plan- for a preschooler who does not yet attend the neighborhood school, this means that they receive exactly nothing.

My angst stems from the worry that Nolan will be denied all services once he turns three years old, which will mean that he will begin to lose ground in the two "interim" years between early intervention and elementary school. At least once he's in school, there will be regular classroom evaluations to monitor his progress. A child on a 504 in preschool receives no regular monitoring.

Of course, all of this angst is premature. For one thing, Nolan has another 6 months or so before our big CPSE meeting. For another, Nolan's score of 117 was not a percentile rank. It was the standard score, which translates to a percentile rank of 87%. Still wonderful (and ahead of most of his hearing peers), but not so amazing as to have him nearly ready for kindergarten at the age of two. His expressive score is at 58%, a little better than average. And his articulation is at 38%- at the low end of the normal range.

Our speech therapist wants him to remain in therapy, which is wonderful. She mentioned the need for ongoing therapy to maintain his language level, and the fluctuant/progressive nature of his loss to date. His loss used to be 40dB rising to normal, as estimated from ABR- it is now 60dB rising to 35dB in his better ear (moderately severe rising to mild), and 60dB rising to 45dB and dropping back down to 55dB in the other ear (moderately severe rising to moderate). We have another hearing test on the 23rd of November, so we'll see if those levels have stabilized.

We'll cross the CPSE bridge when we come to it. Hopefully our local school district will understand the needs of hard of hearing children to continue with speech and language therapy. In the meantime, I'm glad that we have a nice, long break from the formal testing!

Saturday, October 31, 2009

Of Long Car Rides and Earmolds


Nolan would much rather fly to Buffalo.

We drove up to Buffalo to make impressions for new earmolds yesterday. The actual appointment was quite uneventful, with the standard pink goo and disassembling of every puzzle in our audiologist's office. The car ride to and from Buffalo, however, was interminable.

For those of you who are not "lucky" enough to experience a long car ride with Nolan, I will recap the event:

  • *drops juice cup* "MY JUICE! I WANT MY JUICE! JUIIIIIIICCCCCEEEE!"- 25 minutes.
  • *takes off one shoe* "MY SHOE!!! MY SHOEE! SHOOOOOOOEEEEEE!"-20 minutes
  • *observes Matthew sleeping* "MATTHEW! WAKE UP! WAKE UP! WAKE UP!- 10 minutes.
At this point, I can't take any more crying (because all statements in the car must be made at maximum volume, in a sobbing voice). I told him to please use his talking voice, and not his crying voice. So, for the remaining hour, this is what I heard:

"I'M TALKING TO YOU, MOM! I'M TALKING TO YOU! TALKING! TALKING TO YOUUUU! I'M TALKING! TO YOU!"

His pronunciation might have made it cute, in that he sounds Italian: "I'm a-talkin' a you, Ma!" The volume, however, negated any "cute" effect.

The ride home was quite similar, except he didn't have his hearing aids in, so he was slightly louder.

The good news was that he finally fell asleep. The bad news was that he fell asleep three minutes from our house.

Thank goodness our audiologist loves us and booked our next hearing test for the earmold pickup, so we can reduce the total number of trips!

Tuesday, October 27, 2009

Hard of Hearing Moments


Now that Nolan's language has developed to a level where he can really communicate his thoughts and ideas, we are starting to notice the words he doesn't quite hear correctly. This can lead to some rather confusing exchanges!

We were at the Strong Museum in Rochester, and told Nolan that we were going to make a cape at the Superhero station. We went and started to decorate the cape, adding ribbon and his superhero name, "No-Man." All the while, Nolan was getting more and more frustrated. Soon the tears erupted, and I asked him what was wrong.

Nolan cried out, "Where my CAKE?"

The poor little guy thought we were taking him to make a cake, and not a cape. I tried to explain, but he couldn't hear the difference between caKe and caPe, so I finally signed "not cake." I had no idea what the sign for "cape" was, so I pantomimed putting a cape on. He finally understood and was more than happy with his cape. This was definitely an instance when signing came in handy, as the word "cape" was unfamiliar and he just couldn't hear well with the enormous amount of background noise.

It might not be cake, but he ended up liking it anyway.

We had another little moment today, when our speech therapist was working with him. She is working on getting him to identify objects by function, and had several pictures of body parts in front of her. She asked him what we use to see, then helped him select the eyes (he can't do this on his own yet- it is a skill for an older age set). Then she asked him, "Nolan, what do you comb?"

Nolan looked at her, thought for a minute, then shouted, "ICE CREAM!"

We were a little confused, then realized he was confusing "comb" for "cone." Darn those low frequency consonants!

At moments like these, I think a system like Cued Speech could be very useful for helping the little guys to discriminate words with similar sounds! For now, we're just emphasizing the sounds or sometimes using the sign to help him understand what we are saying. Hopefully he'll learn to discriminate those tricky words with practice!

Thursday, October 22, 2009

Random Update

We've had a good week with the grandparents visiting from California, our first snow of the year, and visits to the Strong Museum of Play and Brown's Berry Patch. We've noticed a change in Nolan's language, which is getting more complex by the minute. Recent sentences include:

  • "I don't know where Matthew is!"
  • "My not a baby. My a big boy. Matthew baby!"*
  • "I got my Grandad!"
  • "My a frog. RIBBIT RIBBIT!"
The first sentence blew me away. It was completely spontaneous, and included all the appropriate parts of speech. Also, it was six words long.

He's also been responding better to sound, which is a big relief. We had about a month of poor response, which occurred with a cold. We know that Nolan's hearing level drops to about 80dB in the presence of fluid, so it is a big relief to see his behavior returning to "normal." He's turning to his name again, and even seems to be doing well in the presence of background noise. He turned when his name was called at preschool (the voice was behind him), and responded to Daddy's voice at the very hectic "Zoo Boo" event we went to last night.



The Nexium seems to be working well, and Nolan has been eating a good amount this week. He still isn't sleeping through the night, but our recent discovery that apple juice is on the "no-no" list may help matters a little.

It is nice and uneventful around here- just the way I like it! The only upcoming appointment is for earmold impressions on the 30th and then a well-baby checkup (2 year) in November. I love it when everything goes along so smoothly!



*Matthew heartily disagrees with this statement, and has indicated on numerous occasions that he is a big boy. This is a common point of contention between the two boys!

Thursday, October 8, 2009

July 2010


About two weeks ago, I submitted our application to the John Tracy Clinic International Summer Session. Last night, I received the email stating Nolan has been accepted for the July 11-30 session in Los Angeles, California.

The John Tracy Clinic has been a tremendous source of support, encouragement, and education for our family- from the early days when we were struggling to know what Nolan's level of hearing loss "meant" to these beginning preschool years, when we are struggling with discipline, learning special education laws, and other things that come with having a hard of hearing two year old.

For those who are not aware of the John Tracy Clinic, it provides free resources for the parents of deaf and hard of hearing children. They have a correspondence course for babies, and another for preschoolers. If you have a baby or young child recently diagnosed with hearing loss, I highly recommend their program.

The summer session includes audiology services, various language assessment tests, a preschool program for the children, and classes on everything from speech development to ear anatomy for the parents. Marielle, Logan, Tayten, and Miss Kat have been through the John Tracy Summer Course, and have excellent write-ups about the experience.

We will be staying in the on-campus apartments at USC, and will walk to and from John Tracy. Since we have family in Southern California, the grandparents have quite nicely decided to take care of Matthew while Nolan and I are at school. Matt is in for the time of his life, with trips to Disneyland, the Sequoias, and other trips in the planning stage. Nolan and I won't be left out of the fun, as a trip to San Diego and a few other mini-trips are in the planning stages for the weekends.

I am also thrilled that Lucas and Noah will be attending the same summer session program. I can't wait for July to come so that we can hop on that plane and start our learning adventure!

Tuesday, October 6, 2009

Speech Sample: 25 Months

Nolan is obsessed with the Pixar movie Cars, so when Grandma sent a sticker book with the characters, he was absolutely thrilled! I figured I would snag a speech sample while he was so enthralled. I have noticed his "hearing bubble" seems to be smaller these days- he has had a cold recently so I am not sure if the fluid is causing trouble or if there is something more permanent going on. He's dropped his final /r/ sound (car used to be "tar" and is now closer to "tie"), initial /p/ sound, and is confusing words like "police" and "green." I'm voting for fluid troubles- hopefully it will clear out soon!

Sunday, September 27, 2009

Solutions


Nolan has recently started listening to videos and cartoons. He used to watch television without paying attention to the sound. I know this because he used to sit on the couch, happily watching the visual feast on the screen- the volume set at a point where he couldn't hear it at all, but where Matt could hear it just fine.

Recently, Nolan has taken to standing right in front of the screen, which infuriates his brother. This is a great sign, because it means Nolan now wants to hear what is going on. He wants to hear the dialog, the music... he wants to get the story behind the pictures. Unfortunately, Matt can hear the TV just fine from the couch and Nolan's head makes a better door than a window.

To head off the TV Wars, I brought Nolan's rocking chair downstairs and set it in front of the TV. Now he can hear Cars and his brother can see it. As Nolan gets older, we may have to think about getting some sort of a loop system for the television. For now, though, the front row seat works just fine.