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 language.....technology.... 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!!

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.  

Disneyland

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! 

The kindergarten inclusion party

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

http://pudgeandzippy.blogspot.com/2014/06/kindergarten-inclusion-party.html?m=1

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

Full of love and fun

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.

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.

Grandparent tour

We spent a wonderful weekend visiting our parents and family.  Colin will be on standby call for the next few weeks, so this was our weekend to go visit our parents and celebrate the twins birthday and Christmas with them.

Lots of good conversations, meals made by our sweet moms, my dad reading aloud from a terrific book, and plenty of time to relax and etch the memories in my mind.

Colin and I spent the hours traveling talking about some great parts of the bible and just life in it's ordinary day to day plodding.  I love my hubby and how he cares for all six of us.  Dreams of a soon to happen house addition and a spring vacation made me happy.

This is such an amazing time of year and joy is in all the nooks and crannies of the day, in our hot morning coffee and watching the snow fall.

 Rereading Luke 2 daily and thankful for family and friends to spend time with.  Merry Christmas.

Twin's 7th Birthday

I can't believe the dynamic duo are seven years old!

We decided to have Liam and Tommy's birthday at the children's museum again this year.  We invited both Tommy's life skills classroom plus Liam's first grade classroom.  We were so happy with all their fun friends that made their party so much fun!

 This is my spin art which I absolutely love!

Hannah and I had fun with the photo booth.

 All the kids really liked doing spin art.  I'm heading to value village soon to get a salad spinner so we can do this art again!

Tommy loves Elmo *almost* as much as Nemo

This is the spin art area before all of us really enjoyed it!

Liam loves angry birds.  We had cupcake "cakes" made which was so easy to serve.  No forks and no knife needed.  It's my new "cake" for all parties now!

Tommy loves the kids museum.

Lots of friends and fun was had!

Hydroplaning

Earlier this month we were suppose to go to camp.  "Suppose to" was the operative words.  Seattle Children's had sent an invitation in September for us to go to a weekend with some of their staff and volunteers to what looked to be a wonderful and magical looking place called Camp Korey.

Each weekend at this camp is generally a different kids with 'special needs' group, we had been invited to 'pelvic restoration camp' because Tommy's Hirschsprung Disease caused him to lose most of his colon.  Some friends were also going and I was beyond excited.  I had a list of questions for my friends like "toilet training" and "their thoughts on inclusion" and "sleep training".

I had generated excitement in Liam and Colin too!  I was reciting what activities would be enjoyed and reminding everyone that there "is even smores around an indoor safe campfire!"  So after we met all the pre reqs for camping, applications submitted, emergency contact lists, special accommodation lists, last minute flu shots.... bags were packed and crammed in the van.  Tommy travels with a lot of "just in case" accoutrements and all had been meticulously packaged in luggage.  Day before we are to leave, cue the big illness in Tommy.  Low grade fever and junky cough.  We met with our pediatric folks and our local immunology peeps and the group conscience was NOT to go to camp for the weekend.   It was a good decision, 7 days later Tommy was diagnosed with pneumonia and put on a coordinated home care plan.  All decisions are good right?  No regrets.  Right?

All the thoughts of our family doing a 'normal activity' evaporated.  Liam was sad we weren't going to camp.  Us as parents were sad we wouldn't be able to seem somewhat normal for the weekend and be able to talk to other parents about truly shared issues and struggles.  I stepped into my shoes and trudged to my van to unpack that evening and even kicked the tires thru my tears as I ripped all the luggage out and spat bitter words into the night sky.  Why can't my entire family enjoy one activity at one moment in time together?  Someone is always missing, or Tommy inevitably is sick. 

I've been struggling with concerns about Liam and how being raised with a sibling with chronic illness effects him.  Even Hannah and Nate while away at college, get to hear of current "Tommy illnesses" during our twice a week calls.  I know Tommy's illnesses effect them, and seven years ago when Hannah and Nate were just 12 and 11 they spent Christmases in Seattle Children's hospital and Ronald McDonald houses.   They have tube fed Tommy, given him nebulizers, changed his diapers at age 5 (insert visual of scared tazmanian devil smeared in poop). 

Don't get me wrong, I love Tommy and will go to the ends of the earth for him. Everyone in our family have and would again.  I recognize daily that his joy is more Christ like than any I will ever know in this world. All of that is a given.  But sometimes, I wonder while raising a chronically ill child, have I correctly struck that ever so ginger balance in motherhood of raising children and being a wife all while still keeping Tommy safe and healthy.

Sometimes that ginger balance feels more like driving in the dark night and hitting one of those large deep and wide puddles, the kind that you can feel the weight of the water slow your van, and hydroplaning.  The kind where even moving the steering wheel left or right doesn't matter.  The kind of hydroplaning that all you can do is hope.  Hope that the momentum and direction was right before you ever hit the puddle.  I think ours was right. 

While I was reading this wonderful family's blog post I was reminded again how I question daily my mothering.  My purposeful actions each moment of the day.  I try to find the middle path as our SLP reminded me of last week.  Not the extremes, the middle.

And with a very sweet surprise call from my favorite social worker at Children's last Friday, I was reminded to find the middle again, I lit those candles that glow with battery lifelikeness so that Tommy can't burn his hands on, and line my bathtub and relax and think about my entire family and how I can continue to love loving each one of them.  And I plan our next camping trip.  And I start to list all the benefits of the next place and time and dream of our family together making smores.  And hope.

Thank you

Since I have never received a dozen roses before in my life.......  

I didn't realize they would be this beautiful....

or the sentiment so strongly felt in the words.  

But I did realize my family was *this* loved.

 Because I can always feel it.

Even when my head is lost in the thickest fog and my heart is so amazingly homesick.  And the words coming from my mouth less than eloquent and lacking grace.  Thank you.

Hard choices are coming.  Purposeful decisions for our toe headed hurricane.  And love so strong we feel it although we can't see it.  Faith and hope in a dozen roses.....

IEP season

Yesterday we attended the opening meeting for the annual process, called an IEP meeting, for scoping Tommy's current functioning and in some small efforts designing what his education will look like for the year. 

As most of you know we asked our school to repeat Tommy's kindergarten experience and his kindy teacher asked for him specifically to return to her classroom.  That, as most of you know is a energy and heart investment.  And to get another year of kindergarten for Tommy has been wonderful these past few months.  We are thankful for teachers that 'get it'.

There are many specifics to the IEP we are still examining and searching ourselves for what is best for Tommy's access to his education.  There are many 'feelings' (really stretching out the 'eeeee' sound there) and honestly I'm pretty disenchanted.  And generally, I'm a really optimistic person but this one really has me.

My personal perspective is that Tommy's access to his education is controlled by people sitting around a table who mostly have very little and intermittent experience with Tommy.  Half the committee knows him well, and half the committee has very little knowledge of how he accesses his education.

I don't believe inclusion will ever be successful unless there are co-teachers in gened.  I wish, with all my heart, Tommy could stay in gened longer but realize the design of our district's teaching doesn't support special education kids in the classroom.  And since we as parents represent Tommy at the discussion, all I can say from his end is that transitions... push into gened for circle, pull out for life skills rest and work stations, push in for music, push in for enrichment, pull out for slp, etc create havoc to Tommy's extreme dislike of transitions. 

He is asked to make more transitions during his day than a gened student.  Why do we do this to kids in life skills who detest transitions?  Because we try to disguise it as 'inclusion'.  Because we are afraid to say education is still segregated?  Tommy should be in your classroom

IEP's always have an element of the unknown, different agendas (even though it should only be Tommy's education), levels of knowledge about Tommy, belief systems come into play and in the event of a disagreement the school districts typically have more resources to gain the upper hand in a dispute. So right now, I don't even believe an amended IEP is really even an option.  Visions of David vs Golliath come to mind. 

So when I was reading this article.  Mostly to refresh my own memory of some facts.  While meeting with some new families with children with Ds over the recent few months, I had forgotten some of the 'facts' because... well, quite frankly they don't matter anymore to our family.  I can't recite to you all physical differences Tommy has due to Down syndrome, because they don't appear to us anymore.  But when I was reading the article, #9 really stood out to me.

 

From the article:

#9. Mothers of individuals with Down syndrome typically exhibit better psychological well-being profiles in comparison to mothers of individuals with other intellectual and developmental disabilities. There is extensive evidence that mothers of young children with Down syndrome experience lower levels of stress, more extensive and satisfying networks of social support, less pessimism about their children's future, and they perceive their children to have less difficult temperaments. A major study also found that divorce rates were lower (7.6 percent) for families of children with Down syndrome as compared to 10.8 percent in the population group with non-disabled children and 11.25 percent for families of children with other congenital birth defects.

Now that my friends is ground breaking news to me, lol.  Personally I'm really hoping that happens for me soon!  Because at the IEP meeting I was not exhibiting 'better' psychological well-being.  Insert image of a Siamese cat being tossed off a sky scrapper here, lol.  David vs Golliath IEP issues always have kinda made me anxious.  Tommy needs to communicate, but the supports are withdrawn.  Tommy needs behavior modifications, but it's minimal in the IEP.  And I'm not sure the amendment process would work, as we have taken that path last year and it was exhaustive for little benefit.  His education is just taking a different path, all is not lost.

After reading his prior book Outliers, I really wanted to read his new book, especially after I saw the reviews included insights on disabilities and the title was David vs Golliath.   "The challenge is that the people who might appear to be underdogs or to be burdened with disadvantages actually aren’t." 

 

Us as parents hope that Tommy's access to his education will focus more on seeing his potential and ability and support him, rather than continue to close doors to ways he is accessing his education. 

I pray for the school district, as their load is limitless and resources slim.  I pray for wisdom in knowing what pieces of Tommy's education to focus on and which to let slip.  I am thankful for Tommy, who was perfectly made and who's joyful smile gives our family hope and unconditional love.  IEPs come and go, and even in this process and analyzing all this paperwork we will focus on the good and find joy and ways to support his team of teachers and increase our homeschooling for him. 

"For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."  2 Corinthians 4:16-18

Legofest Portland Oregon 2013

Some stories start with a friend at work mentioning there was something coming close to town and lego related.

Some stories continue with a dad and mom feeling like their sweet six year old has been a bit 'forgotten' in the transitions of life, getting the older kids off to college, and his brother Tommy taking up more lime light

But few stories end in EPIC wonderfulness!

 

We TOTALLY surprised Liam by traveling to Portland this weekend for "camping" and didn't even mention we would be going to Lego fest!

 

We bought tickets well enough in advance which was good because the session we wanted sold out weeks ahead of time.  The "sessions" are for about 4 hour of non stop lego fun.

 

Liam was so excited when we got there, "My heart is beating so fast!".

 

 

We were impressed by all the life size lego creations

 

Most of the creations were easily recognizable characters that they love.  Some were Star Wars and for the older kids.  Lego fest did a great job of catering for the entire family.  From toddlers in the duplo area to us parents enjoying the robotics and engineering legos... and absolutely every age in between.

Lego fest was divided into over a dozen different activity areas, this one was the united states and YOU make something for it!  There were all kinds of work stations with tons of legos and you attach your creation to a square lego base and wait in the "pick up area" for one of the lego staff to take your art to a certain state or just anywhere.  Very fun!

Dad had just as much fun as Liam in the Mega Blaster lego area where you could shoot from your lego creation at targets

 

Liam really enjoyed the robotic cars with infrared remotes that climbed over obstacles

Our whole family LOVED the team sports.  You could put together a team and in two minutes build the span of a four foot bridge that would be suspended between two towers.  Weights would be added to the top of the bridge and either sustain that weight or dramatically (to Tommy's great love) break apart and tumble.  One bridge, made by a team of young kids sustained 115 pounds!!!!

Our family did a "challenge" activity where we had two minutes to design a surprise topic... ours was "what did you eat for breakfast"... we had chocolate chip pancakes so we quickly designed those.  Eeks it was fun!!  And we each won a lego set as a prize.  Fun topic to have "races" when we are back at home to make a common item.

Liam loved experimenting with robotics and gears

 

Tommy and I found a place to "relax" and check out for a few minutes

 

But Tommy wasn't down for long, there were piles of duplos!!

 

And you could make your own fire truck or ambulance to take home and play in the cities that were designed for us!!

The Speed Orz was really fun for Colin and Liam, a target at the end and bins of Speed ORZ legos to get some fast fun.

The really sweet part of lego fest was that YOUR child's creation can go on display!  Tommy is a tire freak so he designed a car and LOVED seeing it on display.

The Lego fest staff were all helpful, knowledgable and FUN!  You could request an ASL signor with two weeks advance notice, we didn't, and the entire venue was VERY accessible for our stroller and to find quiet areas for Tommy breaks. 

 

Liam loved Lego fest and was treated to tshirts, lego sets and hours of fun!  Tommy and us parents also enjoyed ALOT!  This might be a new tradition.  We were the first to arrive to the session and almost last to leave so that says a lot about the fun we had!  For about $80 in tickets we even left with many free sets and activities.  Thank you Lego fest!