On Siblings

People often ask me what Matthew thinks about Nolan's hearing aids. And does he mind all the trips to Buffalo (2 hours each way)? And what will happen if Matthew graduates early intervention and doesn't get the "special attention" that Nolan gets during therapy sessions? Does he mess with Nolan's hearing aids?

It is hard to balance the time required by a baby, much less a baby who has so many appointments, with the urgent demands from a toddler who does not like to wait for attention. On the whole, though, Matthew seems fairly oblivious to it all. Perhaps due to his own language delays. Or due to the fact that he's a little boy who is much more interested in frogs and finding out what happens when one puts a remote control in the microwave* than in his brother's ears.

I actually think that he regards hearing aids as the "normal" appearance of his brother's ears. When Nolan's ears are without aids (bathtime, e.g.), Matthew will point to them and say, "ew!" Nolan's ears look no different than anyone else's, but Matthew views the earmolds as the way Nolan's ears should look.

Currently, Matt gets speech therapy at the same intervals that Nolan does. This may change in the future, since Matt now has 3-4 word sentences. His articulation is still questionable, so we will have to see what happens. We have a great speech therapist who tries to include him in the activities we do with Nolan. Matthew learns some new signs each week, and he also really likes the "sound or no sound" game. It is quite funny to see our 2 1/2 year old pick up a rattle, shake it, and say in a lilting tone, "I hear that!"

On a side note, Nolan thinks there is something missing from Matt's ears, too. He constantly pulls on Matthew's ears and tries to look into them. It would seem we have a bit of an ear obsession at our house as of late, born out of the curiosity of children too young to verbalize questions as to why one has "hear-ay" and the other doesn't.

In an attempt to make sure that Matt gets some special attention, we have enrolled him in a toddler class called "2x2's." Once a week, the 2 year old children and their mothers go to preschool. Half of the class is mommy-and-me, and the second half involves the mothers getting a cup of coffee while the children learn to separate and have a typical preschool class setting. Nolan will be in daycare for this 2 hour period each week (this also comes along with the program), giving Matthew his own special activity and attention.

I don't think Matt really thinks about these things on a deep level, so we just try to balance things as best we can. Who knows? Maybe all the exposure to hearing aids and the associated therapies will lead Matt into audiology, or into AVT, or into becoming a TOD one day!

*the circuit boards in a remote control will fry in less than three seconds in a microwave. And will smell REALLY bad!

Frustration

Keeping those hearing aids in has become a full time job! With the weather getting hot and humid, the pilot caps have been put into early retirement- which leaves those ears exposed to curious fingers! Nolan doesn't mind his aids at all, but is in a major exploration phase and once he finds them, pulls them out and puts them into his mouth. I've thought about making this into a song for AVT:

"You take the left one out, I put the left one in!

You take the right one out, and you put it in your mouth!

We do the hokey pokey and we get those aids back in.

That's what its all about!"

Saliva makes a wonderful solvent for audiology glue, so the tubing frequently gets detached from the earmold. This causes the earmold to come loose from the aid and turns it into a choking hazard. To combat this, we've taken to using Krazy Glue. No, not on Nolan's ears (don't think I haven't thought about it), but on the earmold/tubing junction (not recommended unless you talk to your audi first- ours has given the OK to use it). At least the earmold doesn't separate from the hearing aid anymore, though we still don't have a solution for keeping those aids in his ears!

Anyway, we do have a new nursery rhyme that Nolan really loves:

"Round and Round the garden goes the little mouse.

Up up up he creeps into his little house!"

You circle the little tyke's belly button and say the first line, then creep your fingers up their bellies and tickle their necks for the second line.

In the Nolan vs. Mom with hearing aids battle, Mom comes out the winner every time!

Nolan's "More" Sign

Nolan's "more" sign is starting to take shape and is looking like the actual sign. I still need to get his "uh-oh" word on tape, but that one is a bit harder (since he only says it at random intervals).

First Sign and Verbal Imitation!

We went to the Erie Zoo on Sunday to check out the new wild dog exhibit and had two wonderful language events occur. We ate lunch at Panera Bread and Nolan signed "more" to request more bread. His version of the sign is clapping, which is pretty cute.

Later that day he dropped a toy out of his stroller. I said, "uh-oh!" Nolan looked at me and said, "uh!" Now if we say uh-oh or up, he'll imitate and say, "uh!" Very exciting stuff in this house!

We had more speech therapy today and obtained a few more games to play with Nolan. One is sound vs. no sound. This one is very easy and we simply shake an object which makes sound and say, "I hear it" while pointing to our ear. If the object doesn't make any noise, then we say, "no sound." She also gave us some ideas for creating sound opportunities at home, like setting the timer when I'm in the kitchen. When it goes off, I can say, "I heard that! It's time to ...." and then fill in the blank with whatever I was going to do next. We can also have Dennis ring the doorbell when he comes home, and I can say, "I heard that! Who is at the door?"

We also learned some new signs today: uh-oh, again, off, and on. Our SLP is going to bring some sign books by tomorrow so we can look at ASL vs. SEE and start really considering communication choices. We're taking a lot from the auditory-verbal camp, but we're also using some sign language. It is so hard to know what choice is the "right" choice and which one will work the best for our child.

Our former SLP had never really delved into this, so we were flying by the seat of our pants and not really doing much of anything (I was taking some sign language lessons and we had the speech therapist, but there wasn't any real "method" or "plan").

Carving Our Own Path

I met with our new speech pathologist yesterday, and am so very happy that we finally have someone who has worked with hearing loss before. She noticed Nolan's earmolds weren't seated tightly enough and showed me how to really get them sealed. We talked for quite some time about his level of loss (moderate) and what we want for him. I told her we wanted to go the AVT route because his aided hearing is in the normal range and we want him in a mainstream school setting.

I also expressed some concerns, because Nolan cannot hear us in restaurants (even aided) or when there is a lot of background noise. Bath time also causes some concern for us, because he sometimes seems to hear us and sometimes seems to be in his own world (kids with moderate loss are often accused of "selective hearing").

After some conversation, we came up with a plan that would work for our family and our situation. We will not go with a strict AVT plan, but do AVT therapy and learn some bath related and food/eating related signs. This sort of flexibility works well for us, and eases some of my anxiety about taking him to places where he simply can't hear well.

She was astonished that our former SLP wanted to reduce services for Nolan, especially when his test scores show a lag in receptive language. She said this is a common finding in kids with hearing loss, so we need to really work on this area and narrate our activities, step up the nursery rhymes, and sing and play one-on-one with him.

To that end, we have a new nursery rhyme that Nolan loves, and incorporates several speech characteristics:

(Place baby on your knee and gently bounce him/her in time to the rhythm of the rhyme)

This is the way the ladies ride, pace pace pace.

This is the way the gentlemen ride, trot trot trot

Then along come the country folk!

Lululululululululu!

• For the "ladies ride," your voice is high and soft, and the tempo is slow.
• For the "gentlemen's ride," your voice is low and staccato, the tempo is fast.
• For the "country folk" you trill with your tongue (think Mork channeling his home world*), and move the baby around in a silly pattern.

Nolan seems to love it, especially the "country folk" portion of the rhyme.



*I hope people remember Mork and Mindy.... I'm starting to feel old!

A Fresh Start

Our new SLP called and set up times for therapy this coming week. After ten minutes on the phone, I realized several things:

• Our former SLP never took a look at Nolan's audiogram.
• Our former SLP never asked about communication modalities.
• Our former SLP really knew NOTHING about hearing loss!

The new speech language pathologist asked if I had a current copy of Nolan's audiogram. I told her we most certainly did, and would be repeating a few frequencies on Tuesday. She asked if we had thought about communication styles, and noticed we had expressed an interest in auditory verbal therapy in his IFSP. I had put AVT in his IFSP on a lark, knowing that there were probably no therapists familiar with the technique in our area.

Lo and behold, the new SLP has done AVT with one of her former charges. She has also worked with a total communication model, so she will accomodate whatever we choose to do. We actually get a speech pathologist who has experience with hearing loss? I'm doing a little tap dance as I type this! We want to proceed with AVT, so she requested that we get an aided audiogram to make sure Nolan is getting full access to all the sounds of speech. His level of loss should mean that he has access to all the sounds of speech with his aids, but we should verify his responses when aided.

She will also work with Matthew, since we have a package deal going in the early intervention department. Matt will probably graduate from EI at his six month review (the child still has some articulation issues, but has broken out with 3 and 4 word sentences lately). I would like to get one last hearing test before we boot him out of the system, though... just to make sure!

Staying on the Path to Success

Nolan has been demonstrating wonderful verbal skills for his age (babbling five different consonants and two vowels), which led to his speech language pathologist recommending his discharge from Early Intervention two months after he started the program. I fought that and won, so I was obviously surprised when she suggested reducing services two months after the issue was settled. Luckily we had an IFSP meeting coming up, so I called various sources and found a person who would be a better speech therapist to Nolan (via our local stellar audiologist).

Our (now former) SLP wanted to reduce Nolan down to once per month, then once per week after I argued. With no other options for services in the area (no auditory-verbal therapy, no teacher of the deaf, no cued speech classes), I would really like him to continue his twice weekly sessions.

We are very fortunate with our EI coordinator. She is behind us 100% and has assigned us the speech language pathologist who has worked with a deaf child in the past. Nolan's level of loss is only moderate, but at least this SLP has a background in the needs of these kids. We get to keep our twice weekly sessions and the new SLP starts next week! I am a happy camper.

We did note a couple of "discrepancies" in the testing report written up by our former SLP, including that Nolan responds to all environmental sounds (this is the one area that he is not at age level). She also stated that the reason Nolan was referred to early intervention was for a severe speech delay. His hearing loss was only mentioned in a brief sentence in the middle of the report. This is definitely one that didn't "get" the effects of hearing loss on development.

We have won this battle, and are staying on the path to success for Nolan. With the right supports in place, I know he's going to soar.