Thursday, April 28

What works for us Wednesday

While Tommy and Liam were in the 0-3 year old program, we had access to home based services around OT, PT, speech and our lovely family resource coordinator to keep me educated on all topics of infant and early childhood.  Then when we transitioned to 3-5 yr old early intervention school district preschool services, the OT, SLP and coordination piece became school based and I don't "see" and "learn" from these fabulous teachers.  Our preschool, seriously, is the best practice and has the most amazingingly skilled staff.  We have communication journals that inform us of what happened during the day and what to "work on" at home.  And that works so well.  Plus, the teacher is great at email when she can outside of classroom instruction and bringing me up to speed on current 'stuff'.  But.  I still don't get to 'see' how they are working with Tommy and Liam day to day like the home based services were.  So.  Me, myself, and I decided to take a few classes.  Courses.  Sessions.  Training.  On infant and early childhood intervention type activity and services. 

Part of this decision is because Tommy is progressing in his own unique way (cough cough, not progressing) with communication.  And as much as *all* the folks in his life are working on pecs and sign language.  He hasn't made the huge progress I had hoped for.  At 4 1/2 years old,still no words.  I get a slap on my bum and he points to the kitchen counter and that means bananna.  I sign banana, pull over the pecs for banana, still not initiating the communication.  And some of this is expected.  Delayed vision, delayed hearing equal delayed communication.  But man I'm here to tell you, if he is 15 and still slapping my butt for attention and grunting.  This wouldn't be good. 

So, me and my friend A attended the Ds Community (pacific region of Wa state) conference in April.  Although the topics were for older people with Ds and their parents and caregivers, we learned a ton and met some new people.  It was our first conference on Ds topics. 

Then last night, a bunch of folks and I attended the "my shirt tags are driving me crazy" sensory processing information (jam packed 3 1/2 hour session) on all things for kids that are sensory seekers or avoiders, processing issues in general.  It was amazing.  Tons of information that link, in my mind, to how he is frustrated with communication because he is a sensory seeker.  Big. Time.

And next month, I'll be going to the Wa State Infant and Early Childhood Conference in Tacoma.  Three days on topics of babies to age 8 (I believe).  Here are the sessions in the conference I'll be taking:

1. Toolkit for active learning and successful communication for young children with multiple disabilities (all day class).  This had Tommy's name all over it.
2. Snack talk: increasing communication and social interactions at mealtime.  I wanted to take this one because he has a g-tube and I'm sure there will be ideas.

3. Using visual supports to increase engagement and independence in young children (pictures, objects, words, etc).  We are really looking at the link between the visual supports and his communication of needs.

4. Improving the quality of early literacy experiences for young children with autism and other diagnosis (I'm thinking this may have some hints for Liam too as he has a delay in expressive speech)

5. Multi disciplinary approach to solving infant and toddler sleep problems (read that:  we have a problem)

6. Picture pages- a link to language (heard great things about creating 'picture pages' for my lil sensory seeker that have tons of touch/feel items on them)

7. Identifying and implementing activities that address children's sensory needs

8. Music and early literacy (I can't remember the title but it's the one class I took for Liam)

So, this momma is going back to school.  Would LOVE to hear what kind of classes/sessions are in your area.  Does your local DsO host educational classes for parents and caregivers?  Do they have childcare during the session?  Do you have a parent support network where you can ask questions and learn more?  Do you travel to the national Ds conference?

Wednesday, April 20

What works for us wednesday

Scheduling multiple appointments involving different clinics within Seattle Children's hospital can be a daunting task.  Living in Ferndale, Wa is like living almost on the canadian border so traveling to Seattle is.... a LONG drive. 

I like to make most of Tommy's appointments at Seattle Children's on a condensed day so we can make one trip and see everyone we need to.

It's taken awhile to figure out how to do this.

First, I schedule mostly 'like' appointments on the same day and same location.  And I ask the scheduler, whichever clinic you call first, to look at the schedules of the other clinics and try to schedule everything on the same day.  For example, I just scheduled opthamology and ent on the same day.  Tommy's left ear tube is almost out and his left eye (after clogged tear surgery) still isn't draining and gets alot of matter clogged onto it.  The scheduler spent about 10 minutes locating a day that would work.  Sometimes, the scheduler will even send a couple of emails inquiring about possibilities with different clinics schedules.  And then they will call you back with a date that works for all appointments.

I try to schedule appts that require Tommy to participate in the morning, his best behaved and sweetest time.   Audiology and visual tests are great for in the morning.  Then in the afternoon, just in case he is snoozing, are the appts that usually require minimal Tommy efforts and mostly discussions about continued care items.  I keep "Tommy's personal schedule and mood and possible naps" in my mind when I'm talking to the scheduler.

On a condensed date at Children's, I also ask my local pediatrician for all blood draws they would like.  There is no one better at drawing Tommy's blood than a handsome man named Hector.  Sometimes my local pediatrician will fax the labs needed straight down to Children's as an order, and sometimes they mail the order to me to hand carry down to Children's.  Of course I then stop at the grocery store and get some hard candies for Hector.  That man loves two things in life (that I'm aware of) hard candies and children.  I've even asked (when Tommy was sick in outpatient) to have Hector paged from inpatient rounds to draw Tommy's blood to figure out an emergent situation. 

The only clinic that I'm aware of that doesn't really work for us to condense is cardiology and that is mostly due to long echos and it seems that cardiology schedulers really don't look at other clinics to help consolidate with.  So, usually I keep Tommy's heart day as just that with perhaps labs for bloodwork.  And then separate days for his various other clinic needs.

Consolidated clinic days at Seattle Children's seems to work good by just asking your scheduler over the phone to help you coordinate some different clinics into the same day.  Good luck!  Oh, and I would love to hear from folks if you have even more tips, which I know a couple of you are very clever with how many clinic appts you can stuff into a day. 

One other tip, while you are at a clinic within Seattle Children's, grab their business card and ask them how best to communicate needs for an appt and write that on the back of the card.  All these cards go into Tom's care notebook and then I can take out the business card for the clinic I need to call and be reminded my dr only has appts there on Wednesday's OR the clinic warned me there is usually a three month wait so schedule early.

Friday, April 15

A surprising day

Yesterday we woke up to snow!  In April.  What a surprise.  It didn't fall for long and it didn't accumulate at our house, so my tulips were happy.  Beautiful though while it was falling. 

In the morning Liam had a 102 temp  so I kept him home from school, sent Tommy though!  Liam and I did run to the post office and pick up a box of new diapers for Tommy that we hope is going to be a better size and not give him rashes. 

I worked in the afternoon and while I was at work I got a surprising phone call.  I had read about the "Infant and Early childhood" conference that would be held in a city about three hours away.  The sessions looked amazing, from communication with kids that have autism, to early literacy, science/math, grief process for parents who have a child with new diagnosis, and everything in between.  The conference folks called to offer me a full scholarship of registration to attend the conference and bring back new skills in helping families in my area!  HUGE.  But, they couldn't provide hotel, meals or mileage.  She suggested I contact the agencies that I volunteer at and see if they might have a small budget for the two nights at the hotel or mileage.  I sent an email to those agencies and within the hour one of the folks called (and she hadn't even read my email yet!) about another matter and after we talked about the conference she said I could room with her as she is going also.  Woo hoot!  I promised not to crowd her out of the bed, ha ha.  Or prank call other rooms. 

So, I quickly called my wonderful hubby and told him about the conference and what had all happened and he was thrilled.  Totally willing to care for the kids left at home for two nights so I could become a better parent and helper to others.  Yippee!  When I got off that call, a coworker came into my office and gave me a personal check to offset the remaining costs.  Blown.  Away.  She said that she doesn't give to organizations, only to people that she sees making a difference.  Alright, I cried. 

So, next month I'll be attending the conference and cannot wait to share all the new ideas, tips, theories, and everything in between.   This weekend, I'll also be attending a Down syndrome conference in Renton which is just during the day on Saturday and on topics of aging with Ds, dementia, and transitions to housing.

This momma is getting educated.

Sunday, April 10

Spring break recap

I had worried we weren't "going anyway" for spring break.  A STAY-cation might be "boring".  But looking back over this wonderful past week here is what happened.  Some of this is vague and not detailed because we still need to keep our family privacy on some issues, but I so wanted to share with all of you how our simple spring break went:

Marine Life center touch aquarium and seeing the lil octapus "gumdrop", Charter Boat festival and getting a chance to tour onboard the HUGE charter boats that can take you up to Alaska or thru the San Juan islands... and fantastic lunch at the Web Locker.

I read three great books:  Love Wins, True Love and homegrown tomatoes, and the Lost Quilter.  Hannah read the bible, daily.  Liam read a stack of Caldecott winner books, his fav was Seven Blind Mice (beautiful).  Nate caught up on reading homework.  And Tommy even opened a few books.

Nate and I survived Algebra II homework catchup that included geometric sequencing.  He is one smart kid that can easily summarize theory.  Blown away.

Getting to see my new nephew Maxwell.  Oh so sweet!  My sister Tami and her hubby Jason are smitten with this lil one!  Max has a great big brother Andrew.

Inspiration from *many* people that have been placed in our family's path.  People we thought we knew, but not deeply enough, and now are sharing their hearts and encouragement for us.  Very sweet stuff from others!  Meeting us where we are ate.  Not trying to make things better, but just being friends.

Delicious recipes were tried, including a Choco chip/oatmeal lowfat cookie that was only 90 calories each and tasted so good!

Spring cleaning at my parent's house, which was my sister Debbie's idea.  Gutters, windows inside and out and moss washed off steps so they don't slip.  My parents are simply the best and it is such an honor to help them out and I only wish we lived closer so we could see them more often.  I have the best memories of my childhood and just loved sprucing up their wonderful home.  Great idea Deb and really fun time with ya!

Still in lent, I think twelve days remain from the fourty days total, and still struggling with my sacrifice of giving up facebook.  Looking forward to a wonderful celebration at Easter and the amazing story to be told.

I have struggled with bersitis in my hip since the twins were born, yes four years now.  So I received an injection (from a great dr) and can say I'm officially pain free!  Back to the gym this week.

Time spent with each of my four kids doing things they love.  Alone time.  One on one.  Just absorbing and savoring where each kid is in their lifetime and how unique and wonderfully made each one is. 

An amazing amount of healing.  Forgiveness.  And letting go of some huge heavy yukky stuff.  Man alive, I have been packing some serious hatred for a year now and am free of that darkness.  Done.  Gave it over to Him and feel so much better.

Colin looked more seriously into purchasing a scooter/motorcycle to save gas (oh my goodness gas is expensive).  He has been going to the gym alot during spring break and did one fantastic run to Costco so we have full pantries now!  I love you Colin!

I think that is it.  A wonderful spring break even though we had a STAY-cation. 

Saturday, April 2

Preschool pictures

Our preschool teachers are amazing, instead of the typical school pictures which cause these two so much stress and results in the funniest/saddest school pictures ever..... they had the photographer in the classroom this time!  Brilliant!  I thought you would enjoy.  Tommy and Liam are 4 years old in these pictures.

Tommy Adventures