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!

The Terrible Tympanogram

If you want to know in detail what a Tympanogram is you can see it here:
http://medical-dictionary.thefreedictionary.com/tympanogram

Speech acquisition was really slow with Sweet potato as a child, often her speech was slurred. and indistinct. I took her regularly to the doctor and every time everything with her ears checked out A.O.K.

After years of speech therapy and much diligence she started to speak properly.  This is a first step in learning to read. Saying the words right is important to being able to recognize those words when she is blending.

So after many rounds of Doctors to try and see why she still coughs so much. Jan Bedell told me to specifically ask for a Tympanogram. She had a sneaking suspicion all was not right inside Sweet Potatoes ears. She was right.

Today's visit to the ENT sounded like this:
Mom: Can you check her ears? She is complaining about them.
DR.: Sure thing, ooo nice and clean mom. I don't think the problem is there, I bet it's just sinus pressure she's really swollen. Lets try and even stronger Allergy medicine now that she is 12.
Mom: Can you do a Tympanogram? Her therapist is concerned her speech is slurred and wants to make sure all is ok in the middle ear.
DR.: Yes but I'm sure everything is fine. those tubes just finished growing out.
15 minutes later after a simple test.
Mom: So what is this graph showing? its all flat and is highlighted, again...
Dr.: Well... the graph should like an A  going up and down.
Mom: This looks like and EM dash not an A.... (ok I really didn't say that I just thought it)
Dr: And well this is bad it shows her inner ear is full of fluid. That can cause her to not be able to hear well. the sound is going through some pretty thick liquid. We are going to have to go in and clean them out and put tubes in her ears to keep it dry. Were looking at surgery this is not a good chart at all... Good premonition Mom... *picture my face if you dare* All I can remember is all the lost ear plugs, and no submerging of your head. Visions of the soup nazi saying NO POOL FOR YOU! fly around my head. 

Wow wasn't that fast??? I thought her ears were clean and fine, and wallah they aren't  So I wonder can 2 doctors in different fields manage to only put my Sweet Potato though one day of procedures???