I have been stewing over this post for several days. Sometimes I want to write raw emotion of the moment, and sometimes I'd rather mull things over. Therein lies the crux of blogging...it is the public journal of one's life not the private rant of a diary. I must confess that I'd rather have my public blog reflect the the joys of my life, not the hardships.
Light, so to speak, but life as we know it is not always light nor is it darkness but oft in between.
The balance is in there somewhere.
I have always been the kind of gal who over shares.
As you know we have a darling son, but today I write about our Delsie.
Delsie was born into this world about 4.5 years ago, a regular sort of birth after an unremarkable pregnancy, nothing out of the ordinary except our lovely baby was born deaf. At the time of her birth and since babies undergo hearing screen at birth. So it seemed she failed the screening and again 2 weeks later and a couple months after that. By the time Delsie was 4 months old she wore hearing aids in her teeny tiny little ears to see if her profoundly deaf ears might hear a sound. They did not.
As it goes, Delia received her first cochlear implant at the age of 10 months and heard sound for the first time at 11 months...about 2 years later her internal device failed and was re-implanted.
That is the background?
Have you heard this story before?
When your child falls into the the ever so broad category of "Special Education" you are suddenly shoved into the world of IFSP's (individual family service plan) and IEP's (individual education plan) which basically means you join of team of educators to plan the services your child needs in order to be successful in school (a very simple explanation for a very long definition which involves numerous phone calls, meeting, reports and the such).
Last week, was Dels "transition into kindergarten" IEP (can you believe my baby is going off to K). These meetings tend to be long, tedious and highly charged with emotion. I get all crazy emotional with worry before the meeting date, during the IEP and often end up with a migraine at the end of the day.
Last week was no exception.
The local school district provided all the services we wanted for K...the usual suspects, speech therapy, teacher of the deaf overseeing her progress, audiologist for equipment, acoustic treatments (stuff like felt tips on chair bottoms, area rugs etc etc).
We are thrilled until we found out the district was not going to meet our request for summer school program at a local (50 miles away) school for the deaf.
The district was willing to offer FAPE (free and appropriate education), which means a 3x/week for 4 weeks summer school session in the district, with an unknown teacher, unknown speech therapist with unknown classmates at an unconfirmed school.
I was furious, disappointed and felt defeated.
To toot my own horn (our horn) we are the parents that show up at the IEP meetings, attend all (3-4 times a week for the past 4 years) speech sessions, read books, visit the audiologist regularly...basically we do the work, exhausting as it can be sometimes we get it done.
Delsie is in a mainstream preschool (which she hates); takes gymnastics (which she loves); goes to speech 3 times a week (which she loves to hate); has play dates; teases her brother and can hold a conversation with just about anyone anytime.
This success did not come easy...she did not go from deaf to good speech over night.
She will always be deaf, that is how God made her, but she can hear (out of her right ear with her CI), she can be in mainstream schools and be with other kids.
I wanted the district to provide this amazing chance to go to an oral deaf school for their 3 week summer program... to be with other deaf kids, to have a sense of belonging and to be under the supervision of therapists who get cochlear implant kids and their particular needs.
The district declined our request.
Now we are faced with the choice...challenge the school district to cover the summer program or pay out of pocket at the private deaf school.
To challenge or not to challenge.
Quite frankly I am not sure I have the fight in me.
In the above photo you can see Delsie's BTE (behind the ear device) and blue magnet on the back of her head. This is a more detailed look at how it works.