Special Needs

Special Kids Special Needs

So when I had a newborn with Special Needs, I had wished there was a handbook that outlined what to do, what resources were available and how to cope in general.  Many of these resources listed below took lots of research and self-discovery. Although they  are focused on Down Syndrome, many are valid for other disabilities.  Also, there are many things out there and this is what I would say are priorities. Jodi’s resources below:

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Resources:

1. Enrolling with a good Early Intervention center
   • Good centers attract good therapists
   • You need a proactive service coordinator; they are your advocate, gateway to therapists and in many cases a resource for other things. One good one is YAI – Life start have social workers as co-coordinators and this makes a big difference.
   • Initial services you should demand or fight for:
     • 3x week occupational therapy
     • 3x week physical therapy
     • 3x week speech/oral motor training
   • Special instruction
   • Pay for private services until EI (what is EI?) kicks in. Most insurance providers will cover services before EI.
   • Your services can include a social worker – a connected social worker can be a fantastic resource
2. The parent is power
   • Use your voice and resources
   • Request resources
   • Push for resources
   • Fight for resources
   • Change therapists if need be
3. Feuerstein Center in Israel – The International Center for the Enhancement of Learning Potential.The work of the ICELP is based on the theories of Structural Cognitive Modifiability and Mediated Learning Experience.
4. Oral Motor Therapy Plan of action – Talk tools – break through success in using oral motor intervention to impact speech
   • Lauri Overland in Connecticut – she is the expert but a far drive away
   • Malka Strassberg on the West Side 917 825 9745 trained under Lori
5. Medek Physical Therapy – alternative physical therapy. MEDEK is a therapeutic intervention for the development of gross motor skills in children with movement disorders. Dynamic Method for Kinetic Stimulation.
   • Azriel Novogoder in Teaneck 201 463 0261 will only start when kid is older
6. Start Medicaid Waiver asap. This is a resource that NO-ONE tells you about and it’s amazing. Services include 12 hours a week of Life Counselors, respite car, payment for adaptive devices and reimbursement for toys, outings and recreational activities.
   • Call David Brody at Otsar 917 280 6188
7. Read the following books
   • Woodbrine Press have a series of books on Down Syndrome and other special needs – they help you see what milestones you should work on
     • Physical Therapy for Down Syndrome children
     • Occupational Therapy for Down Syndrome children
     • Speech Therapy for Down Syndrome children
   • Feuerstein – If You Love Me Don’t Accept Me as I Am
   • Magazine “Down Syndrome Amongst Us” – available in Jewish book stores
   • A Special Kind of Hero
   • Jason Kinsley & Jason Levitt
8. Find a mentor- I have randomly met a woman Holly with a very high functioning DS daughter and her advice has been invaluable!!!
   • These people give you perspective
   • By having a vision you can focus your energy
   • Look for a friendship circle in your area – they send teens to your home to work with your special needs kids
9. Trust & Estate planning
   • This is very complicated but essential part of planning for your child’s future. You need someone with special needs trust experience so you do not limit your chances of getting Medicaid. Barry Carmen bic@lawyer.com is an excellent resource

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