5.04.2008

little dear


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.

So...

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.

9 comments:

  1. She is such a precious angel!!! And you guys are great parents! if there is anything i can do to help! help fight i will sure try! IT is so not fair that they would do this!!!! I will pray and pray hard!

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  2. Nicole you are an amazing Mother and it shows that you love her dearly.
    I don't like the fact that we have to fight for our kids within the education system but we do. No one cares and loves and knows our children and their needs like we do!
    Praying you get the outcome that is best suited for your darlin' little girl.

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  3. fight
    love jayne

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  4. I say fight 'em for Delsie and all the other kids. Does JW have scholarships, can we raise $$ another way? Chin up, you're great parents.

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  5. Wow what a predicament. I feel for you! I am sure you will do what you think is best for her, your strength amazes me and encourages me at the same time, you are an awesome mom!

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  6. Niki B,

    You're right. You don't have the fight in you, for you to fight alone, but remember what Jesus says to you, You can do EVERYTHING THROUGH HIM who gives you the strength. He has the fight in Him for you. Ask Him what to do. Ask Him to fight for Delsie. He loves her...He created her, with a purpose for her in mind. Amazing. You are amazing parents. It's okay to have down days. We are human. Sometimes I think you are super human, but still human :-) Be encouraged, my friend.

    Steph

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  7. Nicole,

    I know you may not want to put up your dukes yet again. So I think its best to speak your mind. Tell others... there's probably other parents children in the same spot not knowing what to do or just taking it on the chin. I have a friend who helps children with special needs get the services they need most. I would be happy to put you in contact with her. She lives in Berkeley and is very fimilar with the various school districts. I think with some support and guidance you'll be able to provide and fight for the best education Dels deserves.

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  9. Good luck as you fight to get the very best for your sweet daughter!

    This is a great blog, and I hope you'll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) -- we'd love to have you as part of our community!

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