Flu Blues

Roa is in the hospital. Getting an IV and meds after a few days of the flu. That gag reflex kicks in and nothing stays down! Prayers for a quick recovery!

Famous

Look who made the White Bear Lake School brochure?

Therapy time

At Functional Kids

A Letter of Apology

Dear parents of students from my teaching days,

I am writing this to apologize to you.  For what, you may ask?  Oh, so many things.

I know that I thought I did my best for you and your child.  I planned the lessons and adapted them to suit your child's unique needs.  I carried through with the activities and noted progress.  I recorded areas of need and goals for the future.  I wrote you notes and emails reporting about the day and gave you ideas and "homework" of things which still needed improvement.  Conferences, homevisits, and IEP meetings.

But then I went home.

I went home to a clean, tidy house to eat a calm quiet dinner, watch some TV, and head to the gym for "me time".  I went for long walks with my dog.  I went to sleep and slept allllll night long....8 whole hours, and then returned to school the next day to teach your child.  Refreshed and ready for the workday stretch but always ready to head back home by the end of the day.

I got to leave. I got Alone Time.  I had time to ponder all the issues your child had and how WE were going to work on them.  I had private time to think about new ways to involve YOU in the development of your child.  After all, parents NEED to be involved.

Boy, was I blind.

I was not a parent then.  I was not the guardian of a child with special needs. 
I was clueless.

I throw around terminology and hurtful words-  Like REGRESSION, and INDEPENDENTLY,  and WITHOUT PROMPTING....without a second thought.
I didn't realize how these words can cause worry and sadness.

Due to MY full plate,  I would forget to send a note home to tell about the day.  Or I would cancel a homevisit due to a busy schedule.  I didn't think about the fact of how important those things were to you.  How you looked at a note as a glimpse of possibility.  That the homevisit was a time you could relax and be "hand off" for a moment. to celebrate a little milestone, or to vent about your fears and concerns

I promised you assistive tech. and communication strategies and didn't follow through due to time constraints or limited resource or some other excuse.  I lectured about the importance of charting for potty training or behavior issue and sometimes helped you develop a plan. But mostly I just threw ideas at you to sort out, games and activities for you to fit in your already hectic day, and lists of things that needed work.

Sadly, I left feeling proud of myself.  Look at me, the-all-knowing-Oz of  Early Childhood development.  I had done MY job, now let's see if these parents follow through...
Yes, I judged.

I didn't know then what I know now.

Now, I am getting a cool lesson in reality.  I am a struggling mother caring for two little boys while my husband works.  I chauffeur to appointments and sit in waiting rooms.  I hurry home to get dinner on the table and laundry done while there is crying from the next room.  Crying for attention from a child who cannot help himself.
My dinners are spent with one child on my lap while spoon feeding the one who cannot feed himself.
I am sleep deprived because one child sleeps next to me for part of the night and the other wakes for hours on end.  My alone time is in the driver's seat of a car or when someone volunteers some respite. 
I receive the notes from school, doctors and therapists and try to soak up the positives while wincing from the negatives.  When those notes or emails or phonecalls do not come, I am anxious and wondering what I missed. 
I'm on the phone setting up appointments or interviewing PCA candidates.  I'm dealing with questionnaires, developmental inventories rating my son's life.  I sort through insurance and bills.

I read the goals and  plans that are set for my son.  I tear up when I hear the words regression or delay.  I look at those benchmarks and strive to do better.  To be a better mom.  To help my son meet those standards.  I swear I will work harder.

But then, I need to sleep, or take a shower( while someone cries in the bedroom next door)  I need to be a wife and friend.  A playmate and just a mom to my kids.

And so I feel like a failure.

 I feel probably like how you felt... back when I sat in that meeting and told you all the things your child couldn't do, or should do, or maybe, possibly.... someday... might be able to do.  Helpless and defeated.

So for that, I apologize to you, parents-of-past-students.  I did not walk in your shoes.  I did not feel your pain.

And now.  I know.

Power

Roa's second trial with a powerchair. This time with a joystick. He is doing well!

Terrors, Startles, and Fears

So life is moving along as usual and then one day, both boys decide naptime is for babies.  No more naps in beds for the Thayer duo.

Not a happy momma.  Busy, Busy momma.  With two exhausted boys by nightfall.
Gunnar gets giddy wild in the afternoons but won't settle down to sleep.
Not in his bed.
Not in mine.
Not on the couch.
Not on the floor.
Not with the TV on.
Not with it off.
Not with music.
Not with a fox.
Not in a box.

Roa gets off the school bus, half asleep with his head hanging, but S C R E A M S bloody murder when I lay him down on his bed.  If on the couch, he just giggles, kicks, and moves to get down... aka. fall off.
Which leads to our next issue...
Roa is crying hysterically at bedtimes again.  Scared to be alone, scared of something, startling, afraid to fall,....??  We don't know.  He is also waking up in the night screaming and crying like he is afraid.  Hearts a-pounding in the night for Dad and Mom.
We see this happening in the car too at times that he might be tired.  Reaching out arms and legs,...fighting to grab and balance.

F r e a k s       u s     o  u  t   !!!!!

Well, it also scared the bus driver to bits!  Yesterday, she pulled up to the house honking and waving.  She thought Roa had had a seizure.  She decribed the same type of thing we see- waving arms, crying, screaming, scared eyes.  She said, "It's like he saw something that scared him!"
What do we do with this behavior?  He doesn't tell us what is wrong.  He doesn't even "thumb pick" to give us a hint.  Just gives us his sad eyes and lip out.

Another CP mystery.  Hopefully it is something positive, like he is working through that darn startle reflex and ATNR reflex that won't let go!!!
Prayers for answers!  Please!

Appear

ROA WENT POTTY AT SCHOOL!

How is that for a headliner!!
 We are so proud of Roa!  Potty training is a scary uncertain thing with CP.  We didn't know if he would be able to relax enough to release while on the pottychair.  We don't know if he has the muscle control to hold it and go on the toilet instead of the diaper, but HE DID IT!
That boy continues to amaze us.
Last night at Special Olympics, Roa was in Rockstar mode.  Conquering that obstacle course like he owned it (with Mom and Dad supporting him,  just trying to keep up!)
We also did some scarf throwing and catching and I cannot believe the control he mustered to open up his hand and release the scarf and then try and catch it as it floated down.
Amazing.  Hopeful.  Promising.
Roa is starting to move around the gym at school with some independence in his gait trainer.  He is beginning to steer in the right direction.
Eat.  Drink.  Eat. Eat. Eat. Drink.   His Ipad commands us at mealtime as he requests what he wants next using his Ipad as his voice.  Total control.  Total understanding that he has some power over his life.
Powerful.  Amazing. Hopeful.
All these little things we take in and thank God for the miracles that dwell in Roa.  They are in there... we just have to be patient and wait for them to appear.

Dragons, Cake, and Christmas Trees

Christmas! Christmas! Christmas! What a busy, stuff yourselves, get little sleep or exercise time of the year!
Roa had a wonderful holiday. Anything would beat last year with his holiday hospital stay with severe flu. But this season was nice with many family gatherings, lots of presents, and our own tradition of Birthday Cake for Jesus on Christmas Eve. Roa loves birthday celebrations!
How to Train your Dragon is the hit this year with Roa. Sant brought him the movie and his own toy Dragon! Roa was pretty pumped!
Being off routine was tough for Rojo. He missed school and his friends. It gets boring for him all day at home with mom. We only had two speech/OT sessions and one session of Conductive Ed.
It was great to send him on the bus today. Off to school and back to fighting the fight.
On a positive note, Roa was vocal this break. More imitation and some spontaneous words.
We also starting potty training. Gunnar is also excited about that and has gone on the potty so that is motivating to Roa. Now we wait for the excitement to wear down so he can actually relax enough to go. Oh the mysteries of Cerebral
palsy..... They just keep coming!

Car fun

Christmas Joy

A boy and his dragon....