 | Home |
| About Website |
| General Information & financial aide "DDD & ALTCS" |
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Facts
| Autism |
| Sensory Integration |
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| ADD/ADHD |
| Down Syndrome |
| Arthritis |
| Cerebral Palsy, Epilepsy , Mental Retardation (coming soon) |
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Tips
| Applying for State/Federal financial aide "DDD & ALTCS" |
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Services & Support
| Announcements & Local Events |
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IEP Training Classes & 504 Plan |
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ADD/ADHD support groups & events |
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| Resources & Links |
| Contact Me |
| Acknowledgements |
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About Website
I am a nurse and parent volunteer for Raising Special Kids. I have 3 beautiful children; one child has "special needs", and another struggles with Systemic Juvenile Rheumatoid Arthritis (JRA). 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. My daughters serve as the inspiration for this nonprofit website.
My goal is to help educate and support families having children with "special needs" especially targeting kids under the age of 6. I will also include some general information regarding JRA.
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.
Information will be provided about some basic and alternative programs that may be available. I will continuously collaborate with friends and therapists about highly recommended resources that you may wish to explore. You certainly do not need to travel along aimlessly. Many of us have already "been there" and know a few shortcuts. Perhaps, with some new information you will feel more empowered and hopeful. The faster you become aware of community resources and available choices, the better your child's outcome may be.
Intervention, preferably before the age of 6, can really make a difference!
I hope that this website will assist you in planning for your child's future. Be your child's advocate!
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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. Through the screenings, our daughter's multiple needs were recognized. She was determined to have speech and developmental delays. This was evidenced by her lack of communication skills and high frustration level. She was extremely shy and displayed some Sensory Integration Disorder characteristics. We provided her with private speech and occupational therapies, along with music therapy. She is followed closely by physicians to monitor her visual and hearing needs. At this time, some learning disabilities are also being addressed.
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Our daughter attended developmental preschools and currently is placed in a speech-disorder classroom where she continues receiving speech and occupational therapies. These classroom settings have been beneficial because of her Individualized Education Program (IEP) which assures that she is reaching her potential grade -level skills but at a manageable pace. The instructor has a background in special education and works closely with several aides. Some of her classrooms have "typical peers" which serve as wonderful role models. We consider all of the teachers, therapists, and physicians our "team"!
Almost all of what we have learned and provided for our daughter has come from the input of other parents who have "been there" and openly shared with us. We quickly found out that there was not a simple book or set of guidelines offering suggestions about intervention and the planning of services for our child. Instead, we spoke with these other parents and were guided by our professional "team". 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!
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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 laid 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. She was treated aggressively with medications such as anti-inflammatories, steroids and even injections of Methotrexate (low dose chemotherapy drug) and Enbrel (anti tumor necrosis factor), to name a few.
Our daughter still experiences occasional set-backs but has come a long way over the past 7 years. We are pleased that she frequently rides her bike or walks to school. She has taken piano lessons and is on a basketball team. Most days, she is able to sit on the floor while playing with toys. Her schedule still includes routine bloodwork, frequent doctor follow-ups, and many medications, but she appears happier and continues to remain as active as possible. The great news is that her early diagnosis and swift intervention has thus far afforded her damage-free joints!
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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
