It's a Sensory World

Were going through our TBRI (Trust Based Relational Intervention) class or what I call our adoptive parenting class.  This week were looking into Sensory Issues. Oh my I feel like a have a PHD in this stuff. I have to say Little Giant Steps has been so helpful in our journey down the sensory river.

When I was reading the Out of Sync Child and looking at the Sensory Questionnaire, Instead of responding Often, Sometimes or Rarely I was saying "Not Anymore!"  What a mess Sweet Potato was.   and can still be! :-) 

Yes we did do Early Intervention (IE) with her in New York but it was awful for our family life.  Literally we had stuff to do and places to go everyday of the week. I felt like I spent more time in the car than I did bonding with my child. We had Occupational Therapy, Physical Therapy, Speech Therapy, a Nutritionist, and Sensory play day where she was scared of all the stuff in the room.  Add to the mix doctors appointments galore! My life was nowhere near what I had expected for our family. I remember the therapists pushing me to get Sweet Potato in an all day sensory school. "Yeah they pick them up at 7:30am and keep them till 5:30pm, You never see your kid but its great for them!!!"  That did not excite me as a parent.  I wanted to take my kid to the Zoo, and the park and toss balls and play with Fisher Price toys. Sweet Potatoes idea of playing with toys was to yell NO NO NO if I touched them then put them back exactly where they were before I moved them.  Well that load of expectations landed in the toilet.   Once she turned 3 and we were moving, I ditched all the therapies and moved down here to TX.  We did add back in speech and I just lived with her being frightened of loud noises and dealt with itchy tags and flapping hands.  Once I tried to get her to enjoy watching a thunderstorm (I love watching them roll in), NEVER AGAIN oh my that was a really bad Idea! bad,  bad, bad Idea!  

When she was in 3rd grade I noticed she hit a wall. Ya know 3rd grade where you learn loads of life skills and need to master things like multiplication and fractions. We eventually turned to Little Giant Steps to help us. We were so frustrated "Why won't/can't my child learn?"  Now years later, looking back I rejoice my child can now ride a bike. Before her center of gravity was all off kilter. She thought it was over her left shoulder, so even with training wheels she could tip the bike over.  She couldn't do cross body movements, She was not dominate left or right. We discovered she had never crawled properly.  Sensory Issues were huge in Sweet Potato. No, I can't say they are completely gone but every day in small ways I see they are getting better slowly but surely.

The beauty of the program was they treated her as a whole child. Each time we went back for an update they would tailor a new program for her. Some activities we did for years, some stuff she just filled in the blanks in her brain and moved on. Each time we saw some progress towards her becoming a functional member of society. Early Intervention treated her as parts, without really looking at the whole child and it completely ignored the spiritual side of her life.

The only things I could say in criticism of Little Giant Steps program is it was often too much for this disorganized mama. Hearing the success of a mom with 3 kids on program getting it done at 100% only discouraged me. Often I felt I was to focused on Sweet Potato and Little Miss Sunshine got what was left over.  I also wish they knew about the TCU studies, since they have so many desperate adoptive parents that seek help from them.  Often Adoptive kiddos are much more At-Risk for Sensory processing issues. I wish they had more information on the parenting side and trained us in Time-in's not Token Economy. Mike Monroe explained it as (and I'm paraphrasing here) TBRI is the stool upon which the Sensory Issues can sit and recover. I have seen such incredible progress these last few weeks since I have been more intentional in my parenting. Felt Safety and knowing Mom and Dad are there to help the kiddos to guide them has helped her as much as any therapy did. I can look back and see Little Giant Steps used language such as "this will fix it."  When in reality we can't fix our kids we can only help, support and guide. I wish I had lost that "I can fix her, she's a project" attitude sooner. But don't we as parents really really want to just make everything just right and all better! Our kids are not a project, they are on this Journey of Life with us. Its such a pity our expectations can hamper our ability to travel down the road together.

The best thing I have discovered on my Journey is; once we let go of those pesky expectations we can find joy again!

Surmountable: Capable of Being Overcome

Ever have days when you feel stalked by sorrow?  I have been feeling this way lately. I wonder if it's due to the narrowness of my view? Its like I have the Mommy Blinders on and I have no Idea of the world around me. It was a HOT summer where we have been stuck inside. Now the weather has flipped and its cooler than normal and yet I'm still daily praying for rain, Oh where are the October rains??? Oh no wait it's November... So I keep diligently praying for rain. Who's idea was it to build a city in this arid landscape anyway?

Last Sunday I ran into a friend I used to work with on a daily basis. She was sitting outside on a perfect evening. I was feeling lonely and sad. I had totally messed up my schedule and had just completed a task I was supposed to have done hours before that I had forgotten about.  Yet here in Gods perfect timing was my friend.

She looked at me and said "It feels like 2 years since I really talked to you last." Oh how true that was!! She was so right it has been 2 years. My focus has been so turned into family, fixing the issues at home, healing Little M...... I mean Sweet Potato's brain.  Side note here: I have been lovingly rebuked (isn't it awesome to be Truly Lovingly rebuked :-) by a dear friend and as per her suggestion I am officially changing Little M.' moniker to Sweet Potato, but I digress.  So back to the story... Yup its been a good bit more than 2 years to bring about real change in her attitude, hurts, learning disabilities.  I'm still amazed at the flexibly of her brain and it's ability to change, grow and heal. I just love these Nuro typical days..... upon day, upon day, upon day...we are enjoying them so much.  It was wonderful to sit and talk to my friend about dogs, and the weather. To pass the time pleasantly in the company of  one who loved me even when I wasn't available. 

I feel like I have been under water for a long time holding my breath and now I can see the surface all sparkling in the sun. Soon I can burst forth from the water and breath again.  Only just a few more strokes for a clean full fresh breath of air. Ever dive really deep and look up, feel the pressure of the water actually propelling you upwards. Yup that is how I feel now, ever since the last evaluation at Little Giant Steps. Not that we don't have bad moments brought on by her issues. But now I suddenly feel confidant again they are surmountable.

It's been a season at home and it's been worth it. But today I so enjoyed a fuller day at work.  C. took my kids with hers to a petting zoo (woo hooo field trip I didn't have to chaperon!!!) And I got to go use part of my brain that hasn't been used in a good 5-6 years. Once I found where Adobe hid the tool I was looking for in Photoshop. I was able to then train a talented artist in a different way to silhouette... Old school style...cause lets face it... it's the only way I know how and that select tool just wasn't cutting it.  I swear my brain made happy juice as I was remembering how I used to do this. At one point I was bouncing back n' forth between tools.  I KNEW there was an easier way and of course once I stopped trying to actively remember, my reflexes took over. And bingo!! My fingers had not forgotten the key strokes even tho my brain had. I had the tools I  needed at the stroke of a key.  The Brain is Amazing!!!

Little M's Evaluation :-)

Her last evaluation in the spring was a bit of a disappointment  I was bummed that she did not progress as fast I expected. As I look back I can see she was in the regression/reboot phase so I'm not surprised she did not preform well.

This time I restricted her to phase one foods for about 4 days before the evaluation, because I'm paranoid. Don't want any "Bad Mood Food" AKA Maganese and Phytates to effect her evaluation. She still snagged a few finger-fulls of my birthday cake when my back was turned. I was saving her a piece for after the evaluation!!

Wednesday was her evaluation and Jan was so pleased. She said Little M is blossoming, and that she could name all the Star Wars characters LOL!

We still need to work on removing the Babinski Reflex tho (so stubborn!) and a few more tactility things that always seem the last to go.  Her dominance is all lefty now Woooo hoooo lets hope it stays that way.

We still need to work on visual detail and conversations. I love how now her profile has so few yellow diagonal lines across it!!!!! And Jan kept saying Oh this one would be gone if she gets rid of "x" (one thing not many things.) Or this one will go when this goal above it is complete. This one will go when the detail in the other column is better. It makes me very happy :-) I'm  much encouraged by this all.

I feel a bit sad for people who believe Spectrum Issues like ADHD, ADD and Autism is NOT"cure-able or fixable, and will be a life long struggle for their child."   As I see Little M growing in ability,  slowly loosing her carefulness in tactility issues, looking people in the eye, articulating her feelings and emotions. Identifying how other people are feeling, being generous, compassionate. These things were almost non existent before. Now she wants to share! has fewer issues and is slowly but surely becoming more nuro-typical.   She is much less afraid of the the world. I like that I like it a whole lot.

Her reading comprehension is mid 5th grade and her math is slightly higher. So only about 6 months "behind her peers" so to speak  which makes me happy :-)

And we saw her orthodontist and they have managed to grow her bottom jaw to where it is supposed to be. So her eating and biting ability is much improved.

It's been a week full of bad news and wrangling with the insurance company and I sure did need this good news right about now.

The Lung Report

Yes its that time to update you on Little M's Little Lungs.
She had a Dr.s appointment today. Her lungs still sound the same, she is definitely coughing more.
So if you work at the U of R's pediatric pulmonology department... could you please forward My kids records!!!! Dr doesn't want to do a battery of tests over again since she had pile of them when she was 3.

So we wait some more... Grrrrrr....
I feel so Stupid... My knight in shining armor could have harassed them every day for 2 weeks that would have moved the records into my Dr's hands. Ahh well we play the waiting game.

So tomorrow morning I get to try and convince Little M to spit up lung mucus into a cup. We tried the hospital
lab but she just couldn't bring her self to spit. Sigh.. Who know Motherhood involved making your child spit up in front of people.  Isn't my life so super exciting.  So now were gonna try the spit up into a specimen cup in private.   Then as soon as it gets in the cup we have to go go go go deliver it to the lab ASAP so the germs don't die before they can culture them.

At least it is for a good cause. They get to grow it in a petri dish and see if there is a bacteria causing the mucus to form.    Then they will test it because she has notorious bacteria that seems to be resistant to every Antibiotic out there.  Ever wonder if germs are really aliens??  So were back to wait an see... wait for records and getting gunky stuff out of her, wait for culture, wait wait wait... And the Dr doesn't want to wait he thinks there is good chance of reversing her troubles and making her lungs even more stable.  I really like that he is optimistic.

Mean while the Vest thing is not yet billed (its pending) so we still have no idea how much this costing us. *sigh* But if it helps her breath better its worth every penny God is going to give us to pay for it. 


its a busy week with her Little Giant Steps evaluation Doctors visits, and Orthodontia.  Will school get completed? do do do do  doooo do dooo  stay tuned for the next installment of The Lung Report...

The difference a schedule makes

So were doing Preparing Hearts for His Glory with my 3rd grader,  left side of Creation to Christ and Little Giant Steps Therapy program with my older daughter. Some days we weren't finishing before 6pm and I felt like a ping pong ball bouncing between the 2 girls...
I also am trying to fit in working, working out and cooking for the SBP diet. It was leaving me no time to myself.   Yet some days we had no problems finishing. So yesterday after some research and encouragement from lurking on the heart of Dakota boards and chatting with my good friend C.  I needed a schedule.  So while everyone else was enjoying the cool weather yesterday. I was sitting near an open window.  Mindfully thinking over the last 3 weeks. Which days work which one's didn't.  I noticed each day was different which isn't good for my spectrum child.  So how to fit in 40 min of Vesting... all the chores and school, while still giving her free time to enjoy her child hood.

So I checked how long each box is supposed to take and I scheduled each day down to the minute. Each days schedules are now all posted in the living room.  My dd1 dragged her feet and did not do what was assigned. and I held her  in at recess... She was NOT happy. Having to do the work, she choose not to do this morning during recess when out side is actually cool enough to play in. So it's 3pm she is finished with therapy, and she has an hour of free time today.

I don't know why I fought a schedule for so long. I must have a rebellious streak in me still that I don't like pieces of paper telling me what to do. Even if I wrote them down myself. 

DD1 did an excellent narration, did all her math word problems without difficulty.  DD2 had no trouble with any of her work. I was even able to combine Monart art lessons with science note-booking. So the note books look fine.

So I get an hour of time to blog and the kids choose podcast stories to listen to... which is so good for DD1 comprehension!

Good day  Thank You schedule.... even tho I don't like schedules...