Huge "Changes Ahead" for Wyatt Too! (Part 1)

there has been lots of "change ahead" for wyatt as well!   my head is virtually spinning from all the changes that have taken place in the past few weeks!   practically since wyatt's IFSP...the one that left me feeling so down (you can read about that here), he has made leaps and bounds in progress!   yay, wyatt!   it's funny that his family service provider, while trying to comfort and encourage me, told me how often she sees kids really blossom in their development after their 2 year IFSP (i didn't really believe her)... but WOW has that been true for wyatt!  

back in april, during our last visit to hope haven, the Ds clinic in jacksonville, the therapists recommended that we might should explore some sensory therapies for wyatt.   they did not believe that he has sensory processing disorder, but perhaps some sensory integration issues that could be addressed with specialized therapy. we really struggled with our decision to pursue this type of therapy because that would unfortunately mean switching from a therapist who we dearly love to a stranger.  after MUCH prayer, tears, and stress, as well as exploring every option we could, we made the decision to switch.   and although we miss that therapist very much, i know that we made the right decision for wyatt, who is our primary responsibility!

so what is sensory processing?  a very elementary explanation, certainly not comprehensive, is, as
the sensory processing disorder foundation describes it: Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.  this can be exhibited through any or all of the "senses;" including auditory, tactile, visual, vestibular, and oral.  and it can present either as "sensory sensitivity," "sensory avoiding" or "sensation seeking."  not necessarily the same in each area! 

wyatt's sensory evaluation indicates a "definite difference" in his auditory processing as well as a "probably difference" in his vestibular and oral sensory processing.    this is not surprising to us, as wyatt has always been very "sound sensitive," reacting to loud, unexpected sounds.   he also seems to really seek out movement; he likes bouncing, spinning, jumping, etc.  he also "mouths" stuff a lot!  

so what does all of this mean as far as the changes we have seen in wyatt?    i'll tell you next post!  

Hope Haven Truly Gives Hope!

wyatt and i just returned from our second visit to hope haven's Down syndrome clinic in jacksonville, florida.   i love to go there! we get so much great information and new ideas;  i wish that everyone had the opportunity to go there.  they are so encouraging and affirming!   

it's a long day, basically 4 therapies in a row, back to back!  today wyatt started with ms. debbie, who is an occupational therapist.  she gave us lots of terrific idea to work on at home!   my main concern in ot wyatt's (lack of) pincer grip.  wyatt has the fattest short little fingers that you have ever seen!  it's really no wonder he has a hard time with that pincer grip!    she really encouraged me to work on strengthening his grip, strengthening those hands, gettting him to use them LOTS!!!!    and so we will.....

and then we moved on to see ms. laura, who does the educational evaluation.  she was so happy with the progess that she saw in wyatt since we were there in october of last year!   it's always fun to hear what others see in our kids, isn't it?  sometimes we miss the progress that they are making!   we talked about some concerns that i have for wyatt, including his sensitivity to sounds.  wyatt often gets upset when there are loud sounds around him.  she offered some ideas for desensitization in that area, ideas for making haircuts more manageable, etc.  she is an awesome resource, and it's great to be able to call or email her with questions and concerns that i might have.

our next session was physical therapy where we got to work with an intern, kristina, as well as ms. kris!  they were very happy with wyatt's strength!   they believe, however, that the only thing holding wyatt back from walking is a vestibular issue.  he has the strength, the range of motion, but is still not walking.  they explained that sometimes the fluid in the ear canals (i think) need to be manipulated, swished around a bit.  so they introduced us to Astronaut Training: A Sound Activated Vestibular-Visual Protocol for Moving, a therapy that involves holding wyatt and twirling around and around in various position to swish that fluid around.   there's more to it than that, but that's the "gist" of it!  after they did it one time, they saw a difference in his stability!   so tim will be working on that with wyatt....because i CAN'T twirl round and round like that! 

 we ended our long day of therapies with ms. melanie, the speech therapist.   she did lots of playing with him, getting him to make sounds, signs, etc.  but he was tired and hungry!  so we moved on to some oral motor exercises!  she used lots of different "tools;" jigglers, z-vibes, nuks, etc., to "wake up" his mouth before we had his yogurt!   it was funny to see him eat his yogurt after that, you could tell that his mouth did feel different!   and we worked on drinking from a cup with a straw.  wyatt is STILL nursing at 21 months, and really could care less about drinking anything else!   so she gave me some ideas to work on that as well!

we ended the day with a quick trip back to ms. laura's office for a "wrap up," which is a nice way to end the day at hope haven!   you hear so much good stuff through the day, sometimes you forget to ask questions, and sometimes you just need clarification on something!   

hope haven is a wonderful place, a tremendous resource for our Down syndrome community!  they see over 1400 children and teens who have Down syndrome every year!   they provide their services at a greatly reduced rate, as well, which is wonderful!  many local organizations offset the cost, or pay for it in its entirety, for the evaluation, which they recommend twice a year.    today i encountered a family from washington state who were in florida and were able to have their daughter to be evaluated; people come from all over for their services!   so if you're anywhere near jacksonville, i highly recommend a visit...but plan ahead; there's a 6-12 month wait...... 

31 for 21: Day 21 Hope Haven Evaluation

so lots of folks have asked how wyatt's evaluations at hope haven went yesterday.....for those of you who don't know, hope haven is the only Down syndrome clinic in florida, and is located in jacksonville.  i've had lots of friends who highly recommended a visit there for wyatt.  we feel very blessed to have had the opportunity to full a cancelled appointment slot much earlier than our scheduled appointment of april 2011!  

we loved hope haven!  everyone there is so kind and gracious.  upon my frantic arrival (i was running late!), i rushed up to the door pushing wyatt's stroller and was met by a young man with Ds who had jumped up to open the door for this frazzled mom!    what a great way to start a busy day!   everyone just encouraged me to slow down and catch my breath as we got checked in!   i liked that there were not 20 people in the waiting room....there was one other mom with 2 kiddos, and the young man!   i knew that we would receive wonderful individualized attention!   and we did!

we started with the educational evaluation; wyatt playing on the floor while i told laura all about wyatt and the therapies he already receives!    she enjoyed and appreciated his focus on playing alone.....and his acceptance and exploration of the new toys she introduced!   she gave me ideas that we need to focus more on....mainly picture cards.  soon after wyatt was born we worked more with that, but as therapies mounted, i slacked off on that area.  i plan to really focus on that again, especially on cards more pertinent to his daily life.  she highly recommended that for his communication skills.   as i expressed my desire that he speak clearly, she gently encouraged me to not allow our speech work to impede his other means of communication!  (i needed that!)

we were whisked off to speech eval with melanie.  she played with wyatt as we talked about the skills he already has.  she also encouraged what she called "sabotage," where you withhold an object until he responds in some way.  she also worked on some oral motor things like drinking from a straw and using a z-vibe and jigglers for more oral stimulation to "wake up" his mouth more.  he really seemed to enjoy the jiggler, especially on the tooth that we discovered popping through!    

occupational therapy was next with myesha!  she is a lovely young woman that wyatt took to immediately!  she played fun things with him, working on fine motor skills, discussing sensory processing issues with me (he really only has sound sensory issues, i think!  he hates loud sounds.....).   she was very pleased with his drop/release, and gave me lots of good ideas to work on in many areas.....ripping paper, wadding up paper to develop hand strength; laying on a skateboard and pulling himself along; more weightbearing on his hands, etc.   much to do!

finally we met with monica for physical therapy!   wyatt was exhausted by this time!   but he actually did very well.  she had him walk behind a weighted little tikes shopping cart, since he's too tall for most push toys!  he did great with that.  she also encouraged more bench work, reaching for things above his head, standing from kneeling position, and lots more core work on the exercise ball to strengthen him to be able to hold himself up to walk.  

the only real concern that they expressed for wyatt was that he tends to tilt his head slightly to the left.  there could be several causative factors that we will pursue, including occular, vestibular (inner ear) and orthopedic (not likely).....i've already spoken to our local team and we will be discussing that further next week! 

we ended the day back with laura, our educational evaluator, who is FABULOUS!   she was very impressed overall with wyatt, and thinks that we have done great things with him.  he works very hard and is a terrific "patient!"    he loves new challenges, and is so easy to work with!   of course, he was exhausted and was asleep by the time we got to the van.....and my head was "spinning" with ideas to share with tim and our team!   it was a fantastic experience, and i'd go back next month if i could!   but we'll see them again next year and go from there!   

31 for 21: Day 21 Wordless Wednesday.....Jacksonville/Hope Haven Trip!

"the boys" playing....wyatt, caleb and mr. david!

"this is such a fun game...makes great music too!"

"too early in the morning to say goodbye, ms. karen!"



ms. melanie...speech evaluation



ms. myesha...occupational therapy

ms. monica....physical therapy

"why is she doing this to me?"  
so tired...end of 4 hours of evaluations!