Wednesday, March 14

Beside Tommy

Today our school district celebrated Paraeducators.  Us as parents made them a luncheon and told them thanks in a very heartfelt way.   I want to say what it means for Tommy to have a Para and what an amazing effort they put forth EVERY single day. 

The definition of "para" means "beside".  And I can't think of a better way to describe these folks other than "educator beside" Tommy. 

Paras help him "talk".  Tommy doesn't talk.  He uses sign gestures...and a few grunts to get his requests made and get his needs met.  So when he comes home at the end of the day, I have no way to ask him the usual "how was your day?", "what did you practice in music?", "who did you play with at recess?".  The Paras that work with Tommy write to me each day in a data binder that we have kept for 8 years.

 Every evening I can open the data binder and see how Tommy's day was and I know what questions to ask him so that he can feel successful in a yes/no answer, "music was tough today?, you didn't want to play on your recorder?".  His Paras help him with his ipad software so he can make social comments to classmates, "I like your shirt" the Para helps Tommy find the right buttons to push on his ipad so he can make a comment to a friend.

Paras keep him clean.  Yep.  He is that 11 year old, 85 pound boy, that didn't learn to toilet train and his post surgery issues 'down under' may have prevented him from learning.  These Paras get stuck with all of Tommy's messy, messy issues.  Wet clothes get sent home in backpacks.  Packages of diapers and wipes still get sent to school and these Paras organize all the Tommy clean up tasks. 

Paras teach him.  For a non-verbal student with moderate cognitive delays, Tommy can read and do simple math.  He can recognize change and is working on dollar bill recognition.  He knows the days of the week and months.  He can read and answer comprehension questions.  And it wasn't because of anything we taught at home.  It's because Paras sat with Tommy every day and taught him through discreet trial training methods.  Repetition and game playing in education goes far with Tommy!  Paras set goals for Tommy's learning and are not the first to give up on his education.  They advocate for innovate teaching methods for Tommy. 

Paras keep him safe.  He wears a GPS most days that I sew into a tank top under his shirt.  Even the Paras can keep his GPS app on their phones in case the Blonde Tornado disappears and it's all hands on deck to find him.  Paras know that Tommy is a slippery wanderer and that most of them have an eye on Tommy even if he isn't their student.   Tommy has a moderate immune deficiency because for some reason his bone marrow doesn't produce the right kind of Bcells.  Paras will let me know if Tommy isn't feeling well.  Obviously we don't send Tommy to school sick, but sometimes a common cold can become something serious for Tommy within hours.  They notice even small changes in Tommy's energy and mood and will let me know. 

Paras love on Tommy.  He has some school and social anxieties for a variety of good reasons.  They patiently wait him out if he doesn't want to go to the next class or if he doesn't want to even walk into the music room.  They whisper encouraging words into his ear.  They ask him what he would like to do next IF he gets through a task he doesn't want to finish.  They zip his coat and tie his shoes and make sure he doesn't choke while eating his lunch.  They love Tommy so much!

Paras support Tommy's love of others.  Tommy and Lexi enjoyed a picnic end of school year together last year in part because the Paras all help Tommy be successful socially. 

We THANK all of Tommy's paras for making his education and life brighter.  His future is better because of YOU!!

Monday, January 19

On my knitting needles and nightstand reading stack

When I was last visiting my parents I saw my mom had a book on knitting socks two at a time and from the toe up.  She lent it to me and I've been having a blast starting these socks!

On my night stand I'm reading "Little Bee" which I have greatly enjoyed.  

Saturday, August 9


Sorry for the silence these past few months, I forgot my password to the blog!  And trust me, it was killing me as I wanted to share our Disneyland trip with all of you.
We went to Disneyland during spring break and it was fun, scary, cheap, expensive, sunny, tiring, relaxing, a hot mess, and a an easy peazy time.  The details tell all!
We decided to travel from Ferndale, Washington to Disneyland in our RV.  We have a fifth wheel that is nearly a year old to us now.  We bought it with many of Tommy's needs in mind, as well as all four of our kids and us as parents.  We really enjoy our Forest River Vengeance 397 it sleeps 10 so next time you will just have to join us!
Our RV saved us the cost of hotel rooms and eating out during the trip to California.  We stayed at campgrounds and cooked all of our meals.  Every time we stopped for diesel, I got the boys out of the truck and did Tommy's diaper change, grabbed a snack or a new book and toy and ran around a bit to stretch our legs. 
When we got to Sutherlin Oregon, we really enjoyed a "hidden rv turnaround" at the end of Ponderosa drive at exit 136.  We slid the slideouts out and let them run around in the rv and use the potty and just in general relax before getting back in the truck.  This part of Oregon was beautiful.  Lots of green grass, rolling hills and sheep.  It reminded me of Ireland.  We stayed the night at Medford KOA in Oregon and it was easy to get in/out.  601 miles under our wheels the first day!  We won't talk about how much the gas was, some durations we only got 7-9 mpg.
We left Medford at 8am and crossed the California border by 9:15.  We filled up diesel in Yreka at exit 773 and it was super easy in/out.  As we continued through California we noticed lots and lots of rice fields.  I had no idea California farmers grew rice!
Day 3 we stayed in Santa Nella at the KOA.  I will gladly share with you that the camp manager has the hospitality of a roach.  A cockroach.  Our truck had begun a slow spiral into what we now know was a major break down.  But it was only a 'set back' in Santa Nella and Colin left the boys and I for the day so he could drive into Modesto and get truck parts.  The boys and I enjoyed adventuring around the KOA and I made lunch and started doing some chores.  I was outside of the RV getting something picked up off our picinic table and turned around to notice the RV door wide open.  And only Liam inside.  Panicking I started yelling for Tommy and racing around up and down the RV aisles.  Tommy of course isn't going to 'yell back' but by calling his name I've found it stops him or sometimes he runs toward his name, especially if he feels 'lost'.  And sure enough, about four aisles from our rv I find my toe headed tornado looking L.O.S.T. 
Colin fixed the truck and in the process of all the 'melting down' at this KOA including Tommy's disappearance..... Colin mistakenly hooked the RV up to 'irrigation water'.  Not the fresh clean potable water.  Five bottles of pepto bismol later, we were back on the road as a family. 
We pulled into the Anaheim RV resort, which I HIGHLY recommend very late at night.  We picked this RV resort because it looked clean and nice and close to the Disneyland resort.  And they had a pool!  To save money each day we took the Anaheim shuttle rather than pay for Disneyland parking.  The all day passes are $5/adult and $2/kids.  We could leave the park and come back to the RV park and eat lunch or take a nap and return to the park.  Disneyland parking is about $22/day and you can't leave.

Nate, Liam and Tommy ready for Disneyland!  We bought Tommy a 'special tomato' jogger and SO enjoyed it on this trip.  It's easy to move through crowds of people.  He felt very secure in it with his blanky and would often search his stroller out and crawl into it and buckle up!
To save money we packed bottle waters and chips and fruit to snack on.  I also saved money by getting the little boys Disneyland character items and an autograph book at the Dollar store ahead of time!  I didn't tell them about these treats until we were in the park.

At the park we enjoyed SO many rides.  I believe all but one in California Adventure.  And every open ride in Disneyland we enjoyed.  We got to the park when it opened and left when it closed at midnight! 
A couple helpful things when traveling with a child that has a disability.  I tried to go it 'on our own' for awhile and not get the disability pass.... but quickly I realized Tommy's sensory needs were not going to 'wait in line' with half of America.  I had prepared for the disability pass by getting a dr's note... but alas, Disneyland just asks you the parent/caregiver what you need.  I told them he needed to walk around while "waiting his turn" and I mentioned he may need some special type of help during a ride.  So they gave me a sticker for the jogger to mark as an item for a disabled person... this enabled the jogger to be pushed into lines where strollers were discouraged.  And often we got his disability pass marked with a "come back at this time" and could go walk him around while he waited to ride. 
Tommy chose to ride Pirates of the Carribean like 12 times 
Liam loved Space Mtn, Matterhorn and all kinds of rides

Liam with his Mickey ears

Tommy drove the autotopia car like a BOSS!

Tommy and his many sensory needs.....

We had LOTS of fun! 

Friday, June 27

The kindergarten inclusion party

I'm not sure I could have said this any better than what was written in this post:

I'll be posting more soon on this subject and lots of pictures from our Disneyland spring break trip!

Saturday, May 24

Saturday, March 29

Greetings from California

Drove 601 miles on a great roadtrip and loving California Shasta Valley.  Next stop Santa Nella tonight and Anaheim tomorrow.  Yes there was a 5.3 earthquake at Disneyland yesterday.  Nate was sitting in the hot tub at a hotel and felt the world shaking!  We get to see him tomorrow and will enjoy Disney Monday and Tuesday.

Friday, March 28

California or bust

Headed to California to find a mouse!  Six campgrounds in places we have never camped before and a goal to be frugal on the journey and enjoy the fun this trip brings.

Tommy Adventures