On November 18 2009 at 4:02 am William Alan Bartosch was joyfully welcomed into our family. He weighed in at 7 lbs 9 oz and 20 in long. We were stunned to discover that he was born with Trisomy 21, or Down syndrome. We love him unconditionally from the top of his toe-head to the tips of his toes. We know that this diagnosis will not define him. He is a happy, healthy little boy that just happens to have an extra chromosome.

Follow us on this unexpected and exciting journey as we learn how to live life Will's Way.

Monday, August 6, 2012

Bath Friends

Since I posted last Will has been working hard on his colors, body parts, shapes, puzzles, signs, word recognition, crayon and utensil use and riding his tryke.  His friend let us borrow some new Signing Times videos and he has been loving those.  He has already picked up a few new signs!  He has been going to OT every other week and had been going to ST weekly, until we found out we 'exceded our maximum'.  I knew we had limited visits, but I figured when we got to the limit I would figure something else out and I thought it would be best to go at speech head on.  Well here we are and I am scrambling to find a way to keep him in speech therapy.  The insurance company won't give us more visits and paying out of pocket is not an option.  If you knew what a 30 minute session of speech therapy cost out of pocket you would choke!  So I am applying for grants, begging the county to help us and asking everyone I know if they know any other options available.  Since it is summer break from school, he gets no therapies from the county until school gets going again and even then he needs more than just what he gets at school.  His speech is making slow progress but he is definately, significantly delayed!  So I have been spending hours on the phone talking to people and asking questions, as well as filling out applications and gathering all the necessary paperwork.  I feel a little bit abondoned by all parties!
School will be starting soon however and I think it will be good to get him back into his routine.  He starts back the last week in August at the Childhood League Center and will be in the preschool classroom this year.  He will go 4 days a week for 3 hours and will be in a larger class with 3-5 year olds.  There will be 6 typical kiddos and 6 special needs kiddos.  I am a bit anxious about all of this but I know it is what is best for him.  He thrives on peer pressure and picks up so much from his typical peers in the classroom.  I just fear that his speech and language are so far behind that he won't be able to interact with his peers and participate in activities, and will be left in the dust.
I have also been busy starting work on his IEP or Individualized Education Plan.  Yet another world I knew nothing about before I met Mr. Will!  From birth thru age 2 Will recieves services from the county where we live.  They provided us with services at home before Will went to school, and then they oversee his services at school and pay his tuition.  Everything changes at age 3.  He will then be given a Service Coordinator by the county, but his services will be provided by our school district.  Since he is going to continue at his private preschool, he will get the services there, but our school district will oversee them and be a part of building his goals in his IEP.  The IEP is essentially a document that follows Will whereever he goes and states his goals and his treatment plan of services.  It is complicated and overwhelming but I hear it is also my 'friend'.  It holds Will's teachers and therapists accountable for making sure he meets his goals.  In a sense it is his advocate.  The next step is the evaluation by the school district which we will have in the next month or so.  The testing is necessary to get a baseline and see what services he will recieve, but it is extremely unfair to have a complete stranger ask him to perform a bunch of tasks out of context in a very limited amount of time.  It is frustrating and heartbreaking but I know it is neccessary.

So I guess I have been so busy, I haven't even taken any pictures this month!
  Here are some old ones.

To end on a positive note, Will's eating and food-related tantrums have been much better of late.  Upon the advice of his pediatrician, we have been ignoring the tantrums when possible, and not forcing him to eat when he throws a fit over what we are having.  I do not make him something else instead, so as a result he has gone to bed without dinner several nights.  This was hard for me since I was raised in a house where you come to dinner when you are called, eat everything on your plate and don't get up until you are done.  And there were NO exceptions!  This laid back approach makes me feel like Will is in charge, but it has made for much more enjoyable evenings and dinners!


GAGA Judie said...

OMG how sweet are those little munchkins.It looks like Will is having a great time.Hang in there with all the testing,speech issues etc.You and Ron are doing a fabulous job with Mr Will.He is such a joy!!!

papa said...

wow who ever raised u must have been a real PITA

unc ricky said...

I second what gaga said. Reading your blog tires me, let alone actually dealing with gov't agencies and coordinating therapies, but you two just keep rockin' it...William is one lucky dude.

oh and PS. we both know you never ate all the stuff on your plate... enter Tammy.

papa, if i'm doing my math correctly..if you truly are "papa" then it must have been you and lady gaga who raised dre.

Karen said...

Let me know if you have any school/iep questions Andrea! Love you guys!