I have spent most of my day working on finding a respite care provider for our family.  We have been approved for a waiver here in VA which allows us a certain number of hours per week of additional help.  While the idea of having an extra set of hands is appealing, the process of finding someone who we trust and want to invite into our family is quite another.  I wish that I had a friend or family member in the area whom I could hire.  I would also love to find a college student who is interested in special education and looking for part time work.  Unfortunately, I have neither, so I am forced to work with an agency.  I am just not having a lot of luck.  And I have only 30 days or I have to start the entire process all over again.  Ugh!!

Waverly is definitely feeling better, but she has yet to get her appetite back.  I am having to force her to eat and tonight she wouldn't even drink.  I am not sure if she is still recovering, just exhausted, or if it is something more serious.  Kids with Sanfilippo have an incredibly high pain tolerance and they are unable to communicate very well, so it is usually a guessing game and intuition.

Tomorrow I have a meeting at Waverly's school.  We are beginning the preparation for kindergarten.  Wow!!  Our first meeting should be pain free.  I have requested that she be reclassified from simply "hearing impaired" to a catagory more fitting of her disease.  A new classification should allow me to get her better services and assistance...I hope.


Penny said…
Good luck at your meeting we have Hannah's in mid-March. We also had her re-evaluated already for next year and I go in to talk with the school psychologist on Wed.
Valerie Nelson said…
Hi Shannon! I'm sorry to hear that everyone has been sick and that there seems to be no respite worker in sight! Have you contacted any of the special ed programs at the area colleges? I found someone through the local early ed program when I was in the US for several months. Might be worth a shot. We're thinking of you guys!!

Anonymous said…
Have you put a notice in your church bulletin? I would also contact the local colleges with special ed programs and see if they send out emails to current students and alumni about career opportunities.

Good luck and I hope you find the right person. Respite care is so very important.

Anonymous said…
Dear Shannon,
On facebook, a friend from seminary (Laura) had a link to your blog a few months ago on her birthday. I have been reading, and keeping your family in my thoughts and prayers.

I just read your comments about respite care, and having interned with United Cerebral Palsy, caring for children in respite care, I saw what a gift it was to the child and family. I hope you find the right person.

I wanted to offer a suggestion to find someone good and someone soon. Our seminary, Virginia Theological Seminary in Alexandria, publishes educational and employment opportunities regularly near the student mailboxes and by email. Most seminarians have passed background and psychological tests...etc. They and their spouses are usually looking for employment at least part time, and many are very caring individuals.

Just an idea that hit me. Thank you for your blog, for sharing your very real feelings and beautiful family with all of us. Please contact me at lisaannsaunders@gmail.com if you would like any additional info. about the seminary. I have graduated, and serve a parish in DC so am still well connected and would love to assist in any way possible.

Peace to you all,

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