Childrens Choices   

Community & Parents Working Together...

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bullet General Information & financial aide "DDD & ALTCS"

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Facts

bulletAutism & Sensory Integration
bullet Arthritis

 

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Tips

bullet Applying for State/Federal financial aide    "DDD & ALTCS"

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Services & Support

bullet Announcements & Local Events
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Developmental Screenings for preschoolers

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Child Find Form

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"Special Needs" workshops, support groups, summer programs

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IEP Training Classes & 504 Plan

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Arthritis workshops & support groups

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bullet Resources & Links
bullet Contact Me
bullet Acknowledgements

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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About Website

I am a retired nurse, parent-to-parent volunteer for Raising Special Kids, and I promote disability awareness within the Deer Valley Unified School District (DVUSD).  My husband and I have 3 beautiful children; one is an ambitious Journalist, another has Systemic Juvenile Rheumatoid Arthritis (JRA) and is working towards a degree as a Special Education teacher, and our youngest achiever has enriched our lives, made us better human beings, and by the way, has Autism.  Our family has encountered many challenges along the way, yet we are grateful for the abundance of support and choices that the community has afforded us.  Our daughters serve as the inspiration for this nonprofit website. 

Although this information is geared towards families predominately, but not limited to, residing in the Deer Valley School District of Arizona, there may be similar programs and guidelines within your own city or state

Unfortunately, there are no simple books or guidelines about how to best raise a child with special needs, but you certainly don't have to navigate aimlessly.  Many of us have already "been there" and can share tips.  What we have learned and provided for our own daughters has come from the input of other parents who have openly shared with us  From them, we have learned about invaluable resources such as developmental  preschool screenings, speech/occupational/physical therapy, reliable physicians, specialized school programs, the IEP process, applying for State & Federally funded services, websites, workshops, and more! 

My goal is to educate and support families of children with "special needs".                        Becoming knowledgeable about resources may help you feel more empowered and hopeful about planning for your child's future.

You are your child's best advocate, and early intervention can really make a difference!    

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Our  "Special Needs"  Story

If it had not been for the chance encounter with a speech therapist at a baseball game, we would not have been informed about the wonderful free developmental preschool screenings available through the Deer Valley Unified School District (DVUSD)As a result of the screenings, our daughter was determined to have speech and developmental delays, was extremely shy and displayed some Sensory Integration Disorder characteristics.  She participated in developmental preschool for 2 years, and the typical peers served as great models.

Over time, learning disabilities became apparent, so her elementary years consisted of self-contained classrooms under the direction of a Special Education instructor and paraprofessionals.  Speech and occupational therapies used either "pull out" or "push in" methods. 

She was eventually diagnosed with Autism (but not until the 6th grade)!  Autism is a "spectrum disorder" ranging from mild to severe, and since her symptoms were subtle, she was challenging to diagnose.  Thank goodness we had provided her with interventions during all of the previous years which ultimately afforded her a solid foundation and success!

Eventually, DVUSD replaced the self-contained model with Inclusive Practice (classrooms comprised of both students with and without disabilities). This was an intimidating transition but well worth the rewards!  Now in high school, she has multiple types of classroom settings based on her needs;  some classes are taught by a General Education teacher with paraprofessional support.  Others are Co-taught with both a General Ed & Special Ed teacher.  She also attends Resource Centers for more individualized support with a Special Ed teacher. 

The IEP (Individualized Education Program) drives her education and assures that she is taught grade level content with accommodations & modifications to best meet her capabilities. Inclusive Practice has afforded her the opportunity to be educated with her typical peers which serve as models both socially and academically.  She has been actively involved in activities such as Chorus &  Best Buddies Club.  She has also been a "shagger" for both the boys & girls volleyball teams.  The YTP (Youth Transition Program) teaches independent living skills such as how to manage money, use public transportation, maintain a job, get a driver's permit and so forth.  Bottom line is that she feels connected at school and within the community.  She is happy!

 

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Our  "Arthritis"  Story

Our daughter was a typical, active 5 year old.  She had been jumping on a friend's trampoline one day and later complained of unusual ankle pain.  Later that evening,  she had to be carried upstairs to bed.  The next morning, she had joint stiffness and difficulty getting out of bed.  As the days continued, her pain would seem to fluctuate.  It would lessen during the afternoon but would return again at bedtime or the next morning.  We attributed her discomfort to the trampoline and wondered if she was being overdramatic.   We would "spy" on her to see how she was behaving when out of our sight.   During her most severe moments, she would crawl on the floor to get to the bathroom.  She would grasp the furniture and walls in an attempt to get across the room to her toys.   More and more she would cry and beg to be carried.   My heart broke one morning when I went to wake her up for school and found her sobbing.  She had lain in bed all night having to go to the bathroom.  She  was too sore to turn  herself over and couldn't get out of bed to relieve herself (we never heard her little voice crying for help).

Within a week, she was spiking high fevers and developed a rash which would spontaneously  appear and disappear in a cyclic fashion. These symptoms tended to occur at bedtime and in the morning.   Since the fevers, rash , and joint pain would disappear by the time we got to the pediatrician, it was difficult to diagnose.  We even took photographs of the rash and showed it to the doctor.  Our daughter  was quickly referred to a rheumatologist  and diagnosed with systemic juvenile rheumatoid arthritis (JRA). She was treated  aggressively  with medications such as non-steroidal anti-inflammatories, steroids, injections of Methotrexate (low dose chemotherapy drug) and Enbrel (anti tumor necrosis factor).  Currently, Kineret injections have given the best results. 

Early diagnosis and swift intervention has thus far afforded our daughter damage-free joints and the ability to be an active adult.  While still experiencing occasional flare-ups, she has come a long way over the past years.  She enjoys riding her bike, playing volleyball, and attending college.  Her regimen includes giving herself daily injections, having routine blood work and traveling to Children's Hospital Los Angeles for her annual appointment with Rheumatologist, Andreas Reiff.

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Disclaimer

Information on this website comes only from my personal experiences.  If you find information in error, please contact me.   If I have accidentally published any of your copyrighted material,  please let me know.  I will gladly seek proper permission for publication or have it removed.

Dawn Kurbat, BSN

 

     last updated  05/23/2013                                 Back Next