Thursday, March 31

Can you hear me now?

The twins are scheduled for hearing tests at our local university Hearing/Speech center later next month.  This will be their annual hearing test but we are using our local university this time and not our previous hoge podge of different audiology centers.  So, this means paperwork coordination galore.  Yesterday, I spent awhile signing and faxing consents for audiology reports for both boys from Seattle Children's and Bellingham ENT so those histories can go to our university to better prepare the audiologists there.

To back up, hearing loss is mild to moderate in both boys, at times, and they have PE tubes to help reduce fluid and recurring ear infections.  Their reports last summer put them at "age appropriate range" for hearing, but indicated mild to moderate loss.  I noticed Liam having difficulties hearing his swimming instructor during lessons, and I would casually get right in front of his face and repeat in a fun way what the instructor just said so he could hear it better.  Anytime there is background noise (music, loud splashing in the water, talking, tv) I notice they have trouble following directions or even hearing those directions.  Tommy struggles with background noise alot.  And at the last Wa State Sensory Disabilities meeting with our school disctrict preschool team there was mention of using the FM transmitter in the classroom so he could better hear teacher instructions.  In addition to sign language, picture communication, and spoken words, the FM transmitter might something the audiologist would recommend depending on what their hearing reports show.

Here is info on FM transmitters in classrooms:
In a typical classroom, there are often many distracting background noises such as talking, paper rustling, shuffling feet, air-handling systems and audio-visual equipment. These sounds may be almost as loud as a teacher's voice. In addition, most teachers move around the classroom or turn away from students when writing on a chalkboard, causing the loudness of their voice to vary. For most students with normal hearing, everyday classroom noises do not cause problems. For students with a hearing loss, however, background noises and distance can interfere with hearing and understanding. For these students, hearing aids can amplify the teacher's voice, but they also amplify background noises. Even with the use of hearing aids distance effects are still present. Students with minimal or fluctuating hearing loss, unilateral (one-sided) hearing loss or attention problems also struggle with background noise interference and distance effects, and may not be candidates for hearing aids.

FM (Frequency Modulated) systems may be a solution for many students. FM amplification systems (also called auditory trainers) transmit the teacher's voice directly to the student at a constant level, insuring that the teacher's voice is heard above the level of background noise, regardless of the teacher's distance from the student.

FM systems consist of a microphone, a transmitter (or mic-transmitter combination), a receiver and some method of routing sounds from the receiver to the student's ear.

The teacher wears the microphone and transmitter. The microphone is placed eight inches or less from the teacher's mouth. The transmitter changes the electrical signal from the microphone into an FM signal, which is sent to the student's receiver. Because the teacher's mouth is close to the microphone, background noise is much softer by comparison.

In addition, no matter where the teacher stands in the classroom, the student will hear the teacher's voice as if it was coming from a few inches away. Most FM systems also allow teachers to connect audio and audio-visual equipment to the FM transmitter, providing a clear audio signal to the student.

There is a large variety of FM systems and options available for the classroom. Parents, the student, school personnel and the student's audiologist should work together to choose a system that will provide the most benefit and flexibility in the student's environment.

Once an FM system is chosen for a student, it must be set to fit their individual listening needs. An audiologist, using specialized test equipment, adjusts both external volume controls and internal response controls. In addition, school personnel benefit from in-service training about using and troubleshooting FM equipment. FM system use requires planning and teamwork to help students with hearing losses succeed in the classroom

Sunday, March 27

Happy BELATED World Down syndrome day!

Well, World Down syndrome day has come and gone.... it WAS March 21st, but we celebrate it today, because I just remembered while catching up on friends blogs. 

This video we made of the twins to date for a fundraiser last fall for our local Buddy Walk.  Guess I forgot about the exact date for the "world" celebration because Down syndrome is only part of who Tommy is and doesn't define him by any means.  Our family has focused more on abilities lately which is wonderful and due mostly because Tommy has been healthy.  So, let's celebrate our uniqueness one and all!  Enjoy

Friday, March 25

Not happy, thanks to UHC

Usually, I'm happy.  All six of us in our home have health insurance.  And we have access to quality medical care.  For that I'm happy and grateful.  But recently, when we needed some education and awareness around substance abuse issues, and I entered a parallel universe.  The behavioral health, health insurance parallel universe (cue in music from Twilight Zone and layer over one really tired and frustrated mamma bear).

It all started back in October.   We pre-approved with our insurance so we get into a local outpatient treatment provider.  Pre-approved.  This means we had a long conversation with our insurance company United Healthcare and then with HMA and all seemed fine.  Yes you have benefits.  Oh, yes you have a need.  Yes, you can see that provider, here let me note that in your file and send you a letter at home that says you are approved for treatment and we will provide x benefits.

Fork over CASH to the provider because they haven't dealt with United Healthcare and aren't sure how the claim processing will happen.  Hmpf.  Well, UHC says we are preapproved for this treatment and you are the provider we can use (insert me looking like Snow White here, all innocent as the driven snow).

Twelve weeks of outpatient treatment pass, SUCCESFULLY (praise God), and I'm talking to the provider's billing clerk and the claims just haven't been processed by UHC.  Hmpf.  Wonder why?  And gee whiz I'd like my cash back at some point.  I'll call them (insert me looking like June Beaver, all organized and tidy with my notepad)  .... MANY times.  Tracking reference numbers, answered questions, looked up the provider taxID, license status, address, phone and fax.... thinking I was answering UHC's questions to process the claims.

I, apparently now, have been chasing my tail and buying time with UHC.

Today's phone call, after the provider called and I called supplying repetitively the same information went like this.  Well, we at UHC have SO MANY claims we ship them off-shore to be processed and depending on workloads it could take 30 days after each new piece of information, you supply, to come up with additional questions and problems with the claims.  We are so sorry.  See there are SO MANY claims they are done now by outsourcing to India.  Hmpf. 

And after answering a few more questions today, which have been answered repetitively before by me and the provider, the customer service person shared with me that she has been downsized from UHC offices into her own home (after I heard a dog barking on the phone, again cue Twilight Zone music) because the company has decided working with staff in India is cheaper than hiring and keeping incredibly personal confidential health insurance local.   I lost it.  Asked for her to mark the issue "expedited" for approximately the 12th time and said I know that nothing I ask ... or say... or answer.... or pray... that these claims will never be paid by UHC.  It's a losing battle on getting the services paid for.  I'm angry, defeated and really upset.  They are such a beheameth. 

Looking on the brightside.... the services we got thru the local provider were EXCEPTIONAL and we are back on track as a family.  Because we are a tight family.  Albeight the expensive track.  The track that focuses on walks to see the beaver after dinner, watching movies all six of us squished onto the couch, late night talks, sharing dreams for the future and just being comfortable with us as us.  Urgh, UHC you won't be thought about for another 30 day period!   

Tuesday, March 22

What will you do?

After reading about this sweet newly adopted orphan, what will you do?  Cry your eyes out like I did?  Pray that God heals her and her family from the horror they have experienced.  Go ahead, do something.  You know you can.  Don't lead the comfy life.


Actually, education.  Obviously our goals as parents is to create life long learners.  Curious people who ask questions and want to learn about the world we live in.  Even as they become young adults and all the way thru their older years.  Yes grades and progress are important at some level, but I really hope all four of them become life long learners.

Hannah joyfully announced today she started spring break from Running Start.  She has enjoyed two high school classes plus one of the community college courses.  Next quarter she is taking three college level classes plus one at the high school, whew!  Hannah is an excellent creative writer and her voice really comes across when she writes.

Nate has been busy with sophmore year and steadily working on honors biology and algebra II.  Of course he has pe, english, history too.  When his focus is on learning he does really well.  Nate is very curious about the world, loves to debate current issues and discuss his thoughts.  He has a spatial brain so math and physics concepts are easily understood. 

Tommy is doing great in his Pre-K program.  At a recent conference we all discussed the value of sight words and pictures for Tommy in combination with sign language.  So I'm starting the "See and Learn program" at home.  I like it because there are plenty of instructions, it's fun, and it's free!  I've got to call my friend Steph and see about her laminator and make some progress on getting these words and pictures a little more.... Tommy proof.  People with Ds are visual learners I understand so this is an exciting program to use.  Tommy is interested in sensory exploration; if it's musical, tactile or visually interesting he wants to learn more about it. 

Liam is also doing great in his Pre-K program.  We are starting fun home studies on BOB books, some prewriting coloring, and pre math patterns with sorting and puzzles.  Liam is a sweet boy who is slowly learning and blossoming.  He loves to learn about mechanical aspect of anything, so we need to keep his interest by making things move, roll, tumble, and keep learning low key and fun.

Sunday, March 20

Enjoy today

Lots to enjoy today! 
Thanks to spring sunshine. 
Oh how I have been patiently waiting for you first day of spring.

Small boys running behind weathered push toys thru the yard
Wishing my sister Tami Happy Birthday!
Church service with my family
Chicken salad sandwiches for lunch
New parent reception at Down syndrome outreach, can't wait to hold me some babies!
Starting a new quilt for a very late wedding present for my nephew and his sweet bride
Sketching out our vegetable garden and planning who is going where, eggplant and melons too this year
Remembering watching Narnia last night, curled up with my teens while all their friends were at prom
Sunshine creeping across hardwood floors
Laundry steadily transformed from crumpled floor messes to hangers and stacks in each persons basket
Hot coffee with vanilla creamer
Two boxer doggies wagging their nibblet tail stubbies in excitement at running outside without rain
Plans for soft tacos for dinner and winding down before the chaos of the week begins... again.

Enjoy today!

Saturday, March 12

Soggy day

Liam doesn't mind soggy, rainy, wet days outside when there are rescue heroes to play with. Or a train to create out of cars.

Liam even likes the dinsoaur in a farm truck trailer. 
We decided to make "I spy bottles" with colored rice.  Liam really likes to help.
Hannah even got into the action of mixing the colored rice with the items inside so Liam would need to look extra hard.  One bottle has the alphabet.  The other bottle has items Tommy will enjoy finding. 

And we ended the day with more meals for our freezer and to bless my VERY pregnant sister with some meals.  Mmmm.

Nate's 16th birthday

Nate turned 16 this month!  There is only a year between him and Hannah.  We celebrated at a pizza place with 18 of our big ol extended family.  Way fun!
Nate is my mellow kid, although he is really coming out of his shell this year, very sweet, smart, loves playing bass guitar, really enjoys music (favorite right now are the knowmads), helps me with small kids and chores, longboards, likes the outdoors and is trying relaly hard to grow into a young adult. 

And Gabe, my nephew, turned 10!  He is an amazing boy who is athletically talented, a good younger and bigger brother (he is second oldest in a family of four), great at board games (I think the one he beat me at was flicker football very fun), loves animals and is a super sweet cousin to my four kids.  I have really enjoyed watching him growing up into an older kid now.

Thursday, March 10

The week in review

Huge fluffy snowflakes falling heavily in the morning sunrise
Steel cut oatmeal warm in a bowl with agave sweetner and coconut milk
A prank quickly played on the school bus driver by the thug of our toddler named Tommy
Planning two baby showers this month has reminded me what a joy mothering is and the miracle of life
Slivers of sunshine coming thru windows and casting shadows around toddlers playing with toys
Hannah's almost broken down VW bug on a freeway onramp turned into a blessing in so many ways
A sixteen year old boy in our family now and oh how he is loving his longboard to skate on
The word 'twin' still popping up in our daily language although so infrequently now that they are individuals
Farm animals swelling with their spring babies are as wide as they are tall and sweetly waddling
Gym workouts with my hubby have left us both with widdling waists and plans for our future
Someone decided to join teen youth group at church
Wet swimsuits to be washed and dried before the next swim lessons for the dynamic duo
Moments to volunteer and serve still able to be carved into nooks and cranny's of the day
Amazing new families met that I get so much more out of then they ever could gather from me
Shared dinner with eighteen of my family and loved and laughed and hoped it wouldn't end
Prayed for continued health of my sister being pregnant, my dad's open heart surgery mending and....orphans
Hope next week is just as great!

Thursday, March 3

Down syndrome and combined hearing loss with vision

For Tommy's first year of life he had a combined hearing loss and delayed visual maturation.  It wasn't until he was nearly two years old that both were corrected to the point that he was seeing and hearing within normal ranges for his age.

The processing of that vision and hearing has needed some catch up time.

We have been blessed with working with Wa State Sensory Disabilities Services.  This is taken from a recent observation of Tommy within his sweet preschool environment.   I thought it would be helpful for my extended family to see where he is in language development and how he favors, slowly, sign language. 

Observations: Tommy cooperated with the morning routines, followed one- step directions when spoken and signed, engaged in building blocks, drawing, circle time and large motor activities for 5-10 minutes at a time. A big improvement from last year! Tommy initiated communication with different teaching staff during the morning: Examples of communication skills included:
• Getting adults’ attention by vocalizing or gesturing and thensigning or gesturing for what he wanted
• Establishing eye contact
• He vocalized with the sounds “ba ba,” “buh buh,” “da da,” “ha ha,” and imitated a mouth movement the teacher made.
• Chose a snack by selecting from pictures offered

• Vision and Hearing updates. Sandi reports that Tommy’s hearing evaluation reveals with PE tubes, his hearing is within normal limits. His original diagnosis of “delayed visual maturity” no longer applies, according to Sandi’s summary of his vision test. This means he continues to develop visual skills and that he has access to sound, even if he is delayed in attaching meaning to speech sounds.
From classroom records, he consistently understands about 40+ signs and regularly uses 15+ signs which is age appropriate  for 36-60 month for interaction, vocabulary, grammar and speech. 
Research shows that printed words (that the child already understands but doesn't say yet) may be helpful for learning speech, for children with Down syndrome
Use of pictures, and "experience books" may be a way to build vocabulary at home and at school
So, I'm off to get a laminator machine (or use Amy's) and make pictures with sight words for familiar objects at home that he can then use to request.  This was INVALUABLE feedback.  And although VERY specific to Tommy, I wanted to share his progress and some ideas on how to continue on from this point.

Tuesday, March 1

Duo learns to swim!

Last night was the first swim lesson for the dynamic duo.  They were EXCITED!  We don't have a swimming pool in our town so we drive to Bellingham and enjoy their BIG pool center.  The duo are in the small pool which has a graduated ramp to get in and little ropes to divide the pool into the two classes that use it. 

I had NO idea what was going to happen with Tommy.  My son usually loves water, but the loud environment and chaos *might* have been enough to send him over the edge.  But both boys did terrific.  The center wanted me in the pool with Tommy to be his 'aide' which sounded great over the phone and in the water it worked terrifically.  I did everything the instructor did, used sign for Tommy so he could use the signs back to me and the instructor.  Wow.  Impressed.  Both boys:

  • put their faces in the water
  • sat on the wall
  • waited for the instructor to say "your turn" then slid their bum into her
  • introduced themselves to their classmates (  "I LIAM"  and Tommy used his name sign a "T" to his mouth)
  • walked the width of the pool in the water using their scooping hand movements back and forth
  • assisted back float (not pretty for Tommy but he did it)
  • JUMPED from the side of the pool in a standing position to the instructor
  • walked the width of the pool blowing bubbles in the water (Tommy just had his chin in the water, no bubble)
  • sang lots of songs
  • sat on the wall and kicked their feet making big splashes

This is Preschool level 1 and age appropriate for them.  After the class the instructor and I talked, I wanted her feedback if we were too labor intensive (I'm being honest).  She observed Liam doing everything, and said Tommy tried or did everything also.  She said it was the perfect class for them and as long as I could be with Tommy it would work great.  Whew.  Good.  Except for me in a bathing suit.  And the fact that I came straight from work and daddy forgot their post swimming clothes.  And it was hailing.  Next class is tomorrow and we hope to get there a little early to view the adaptive swimming program and see if that would be a nice addition for Tommy.

Swimming is so important.  A skill to have in the northwest for sure!  Hannah and Nate learned to swim at very young ages and Hannah competitively swam for Bellingham Bay swim club for two summers.  I have terrific memories of many years of swim class that my parents religiously took us to.  Hope the dynamic duo will enjoy years of swimming instruction too.... and we will keep in fun!

Tommy Adventures