As a parent or guardian of a child with a disability many times questions regarding availability of supports and resources accessible is of great concern. The following is designed in hopes that parents or guardians of a child with a disability may become empowered to become more knowledgeable advocates, utilizing practical skills rooted in a deep abiding faith in Jesus Christ.

Trusting in your own instincts and observations of your child is essential. You are the best advocate that your child will ever have. It is important to maintain a record of your observations in order to relay accurate information to those supporting your child and your child’s family. Additionally keep a log of the information provided to you by health care and service providers as this can help you to recall information and can support you in recognizing things that you may not fully understand in order that you may later ask questions if needed.

Ask for additional opinions, information, and advice when needed; after all, this is your child. It is essential that as a parent or guardian you have all of the information that you need in order to make the most informed decision. Additionally, if you are not satisfied with the health care or service providers assisting you, it is your right to make necessary adjustments. As someone within the field, it is far better to know sooner than later if a family has additional concerns or needs that are going unmet.

Supporting a child with a disability presents unique challenges. For this reason it is imperative to remain connected. The stress associated in raising any child can be difficult, however, having the opportunity to link with other parents, guardians, or adults with a similar disability can assist in not only helping you feel less isolated and encouraged, but may offer ideas and additional resources that professionals may not even be aware of. Who better than the network of self-advocates, parents, and guardians to provide mentorship, support, and a forum for the discussion of ideas and concerns? You may potentially become a mentor as well. When facing challenges sometimes it is in the giving back that so much can be received!

So the real question becomes, where can I turn for help? There are supports that can be received within each state through the Department of Health and Human Services, Department of Mental Health, First Steps programs, and other private agencies contracted with by various state agencies. Through these programs services such as respite care, personal care attendant, offsite day rehabilitation, counseling, even supports such as sibling workshops may be received. Through these agencies issues such as finding appropriate supports as well as funding supports can and will be addressed. Additionally it is important to recognize the role of the schools. Under federal guidelines schools are mandated to provide specific educational supports and inclusion through development of what is called an Individualized Educational Plan (IEP) or a 504 Plan depending upon the nature of the disability.

Remember that God will never give you more than you can handle. God will provide you the strength that you need to get through the difficult situations and will bring you joy and blessings in your child. Be sure to take the time to nurture and restore yourself spiritually, physically, and emotionally. Seek support in not only your biological family and in friends, but in the family of God. Know that God will provide quality people in your life who will care for you and your family.

Submitted by Heidi E. Johnson M.S.

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