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January 9, 2004 |
Happy New Year!
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What is Early Intervention?
When a person becomes a parent, there is a flood of emotions that accompany this special time. Add to that the news of their child having special needs, it can be overwhelming. Our first instinct is to help our child. What can we do? To whom do we turn? Our first reaction may be the medical field. This is certainly an excellent start but it is just the beginning. In addition to addressing our child’s medical needs, we need to be aware of their developmental needs as well. Early Intervention programs (EIP) are the fodder for the development of our child. Most programs can evaluate and even provide therapies that will enhance your child’s development. From my experience in the development of my child, the earlier we stimulate our children in their areas of need for special consideration, the better. Depending upon your area, these services may come from the government, the local school district or even a religious area. We must become developmental specialists in relation to our child. You are your child’s advocate. As much as other people may love and want to help them, you are the one that will make the final decisions. In order to make informed and balanced decisions, we must know what it is our child needs, what direction we would like to see them begin and how best to get them to that destination. Listed below are some ideas to assist you in becoming your child’s specialist: Determine your child’s needs - Get evaluations from your pediatrician, EIP’s, your own observations, observations from others that are in contact with your child What direction to begin – What do you want to see your child doing 3 months from now? 6 months from now? A year from now? Getting what your child needs – Search for information on what programs will suit your child, your schedule, your life; talk to other parents of special needs kids - What do they do? With whom do they confer?; Observe what you do with your child that achieves positive results Early intervention whether from professionals or yourself is an ongoing process. It will take many hours of research, soul searching, observation and contact with sources that will benefit your child to begin to see where your child is going. Many of the everyday activities you do with your child will become some of their most helpful therapies. Above all, have fun with your child. Be open to the lessons they can teach you. In my humble opinion, being a parent of a special needs child makes you a very special parent. |
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PKS Support, Online Group…If you would like to join, please send an email to infantsol@yahoo.com. We would love to meet you and your family. We’re here for you! |
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Special Needs Trusts**
In thinking of the future of our special needs children, one aspect that is often overlooked is their financial security once we are unable to care for them. We may have our wills drawn to designate a caregiver for our child and the financial means to do so. The laws concerning their government care (Medicaid, SSI, etc.) may be hindered or even discontinued if they are the direct recipients of an inheritance. This is where Special Needs Trusts become important. According to a guide+ from ARC, “One way to provide for the financial security of someone with a disability without jeopardizing government benefits is by using a trust. Trusts hold money or property that the grantor, the person who sets up the trust, leaves for the benefit of another person, called a beneficiary. Unlike an outright gift or inheritance through a will, a trust usually contains carefully written instructions on when and how to use the trust’s assets.” Your first step in establishing a Special Needs Trust (SNT) is to locate a lawyer that has extensive experience or even specializes in SNT’s. One way to find such a lawyer is to visit the Special Needs Alliance website (http://www.specialneedsalliance.com/default.asp) Here you will find a wealth of information and a search tool to find a lawyer in your area. Once you have employed the lawyer for the construction of the trust, your next step would be to find a financial planner to assist you in creating the funds for the trust. Usually the lawyer that assisted in the trust can recommend a financial planner that has experience in SNT’s. You could also contact the ARC for assistance. |
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cont'd| Vol1:Issue2 |
January 9, 2004 |
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Special Needs Trusts, cont’d
Also be aware that you can begin the trust now. Again, talk to the lawyer you will be using to create the trust. They will be your greatest source of information for this area of your child’s care.
** These statements are in relation to those special needs families in the USA. Check with your local legal community for the criteria in your area concerning Special Needs Trusts. + http://209.183.228.233/index.asp?a=1&d=25178-ARC |
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8 Helpful Links
Andrea Colasanti’s site
Online support group at Yahoo http://groups.yahoo.com/group/pks_support/
Chromosome Deletion Outreach http://www.chromodisorder.org/
UNIQUE
Our Kids
For Parents and Caregivers of Children with Special Needs http://www.specialchild.com/index.html
PKS Information http://computerwhizzltd.tripod.com/dox/pks1987.htm
Dr. Lilli Nielsen, “The Little Room” creator http://www.lilliworks.com/about_dr__lilli_nielsen.htm
The Disability Equip Register for UK http://dspace.dial.pipex.com/town/square/ae208/
Web Sites of real PKS kids:
http://www.leona-ev.de/berichte/kerstin.html
http://www.pk-syndrome.org/Phil.htm
http://www.pk-syndrome.org/cases.htm
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"There are two days in the week about which and upon which I never worry. Two carefree days, kept sacredly free from fear and apprehension. One of these days is Yesterday. ...And the other...is Tomorrow." -– Robert Jones Burdette |
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Say hello to Jordan! Jordan was born in January of 2000. She was born at 35 weeks gestation and weighed 5 pounds, 13 ounces. Jordan was diagnosed with PKS at 3 years, 2 months old. She has been in an early intervention program since she was 12 months old. She attends a special needs nursery and is definitely the queen of her domain where her siblings are concerned. You can read all of Jordan’s story at: http://www.pk-syndrome.org/jordan.htm
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