Besides comfort and understanding nothing is more valuable to a father of a disabled child than accurate and timely information.
These are the primary sources of information available to you (in order of value):
1. Other parents with a child like yours
2. Professionals: doctors, therapists, social workers, educators, lawyers, tax experts
3. Nongovernmental agencies (NGOs) which advocate for parents and their children)
4. The internet
5. The literature: books, articles, scientific studies (in bookstores and online)
The first information you want is about your child’s condition and what you can expect.
Here are some TIPS for gathering this information:
1. From other parents with a child like yours:
• Possibly the best information source there is; certainly about what to expect; as overwhelmed as you may be, seek out these people; besides accurate useful information, they understand and can offer genuine support.
• In addition to family and friends, ask your social worker to put you in touch with other families.
• Local groups may help you find a family like yours:
• Special needs church ministries
• Friendship Circle (Jewish groups) http://www.friendshipcircle.com/locations
• Local NGOs which advocate for children like yours
2. From Professionals:
• Professionals speak in “jargonese”. ASK FOR EXPLANATIONS OF ANYTHING AND EVERYTHING YOU DO NOT UNDERSTAND. Do not be intimidated by “professional” titles. THESE PEOPLE ARE THERE TO SERVE YOU and YOUR CHILD.
• Understand that professionals have expertise in the way they have been trained. There may be other approaches to your child’s needs. Seek 2nd and 3rd opinions when possible. Don’t give up seeking answers until you feel confident that what you hear from the professionals makes sense to you.
3. From the internet:
• Take information from reliable sources. Such as:
• For autism spectrum disorders: National Institute for Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/autism/autism.htm
• For ADD/ADHD: Centers for Disease Control and Prevention http://www.cdc.gov/ncbddd/adhd/facts.html
• For genetic disorders: National Human Genome Research Institute https://www.genome.gov/10001204/
• For mental health disorders https://www.nimh.nih.gov/health/topics/index.shtml
• Information overload; seek answers to your specific questions first; “gather” information later
• You will often find “worst case scenarios” of your child’s condition; your child may never come anywhere close to what you read about; pay close attention to your child for cues about what he needs; DO NOT BE DISCOURAGED BY WHAT YOU READ OR HEAR. (My son’s first physiotherapist called my son a “dishrag” because he was hypotonic; today he is a multi gold medalist in bicycling at the national level of the Special Olympics.)
• Just because it is written and you have read it does not mean it applies to your child. DO NOT LOWER YOUR EXPECTATIONS FOR YOUR CHILD BECAUSE OF SOMETHING YOU READ OR HEARD. (My wife read a book that said children with Down syndrome will likely never be able to button their clothing. My wife threw out the book.) Set your expectations based on what you think your child can do and what you want him/her to do. You may have to alter your expectations depending on your child’s performance, but do not start out with low expectations. Let your child be your guide; not something you have read or heard.
Gather the following basic information and file it:
• About your child’s needs
• Create a fact sheet or overview of the disability; you can refer to it or show it to people who inquire about your child
• Info of how the disability impacts on development, behavior, learning and education; these are alerts to look out for, but NOT predictions of what will be
• Tips of “best practices”; collect these as you go along; it helps to have something to refer to “in the moment” when you need direction
• Articles that you may want to reference later
• Medical information
• Diagnoses and test results
• Referral letters for assessments and treatments
• All therapy assessments, treatment plans, and progress reports
• Education information
• CAUTION: KEEP ALL DOCUMENTS AND CORRESPONDENCE FROM YOUR CHILD’S SCHOOL. EDUCATION IS A BIG BUREAUCRACY. IF YOU SAY “I HAVE IT IN WRITING” YOU MUST BE ABLE TO PROVE IT.
• Get access to the information which describes the policies and procedures of your child’s school as they affect your child. Know what your school is and is not obligated to do for you.
Request this of the school principal or your state department of education. (Find your state department address here: (http://www.yellowpagesforkids.com/help/seas.htm.)
• IEP (Individual Education Plan). The IEP is the final product of a huge bureaucratic effort to educate your child. (Some people hire professional IEP guides to take them through the process. That’s how big it is.) Start here to learn about IEPs https://www.verywell.com/what-is-an-iep-3106858
• Test results, progress reports, report cards
• Notes from meetings with teachers and specialists; IEP meeting notes
• Medical and/or psychological testing done for the school
• Legal information
• You want to know what your child is legally entitled to in his education. There are 3 basic laws which apply to children in the United States:
1. Rehabilititation Act of 1973 (Section 504)
2. No Child Left Behind Act of 2001 (NCLB)
3. Individuals with Disabilities Education Act of 2004 (IDEA)
• Two websites for legal information
1. http://www.wrightslaw.com/ Wrightslaw is a bit overwhelming with information, but you will find it valuable if you persist.
2. US Department of Education: (the three laws) http://www2.ed.gov/policy/rights/guid/ocr/disability.html (Section 504 law)
http://www.ed.gov/essa?src=policy (NCLB updated)
• Financial information
• Insurance information
1. Policy number
2. Contact information
3. What is covered
4. How to make claims
• Trust information (It is never too soon to think long-term about setting aside funds to care for your child when you no longer can. Trusts and wills become useful tools to provide this care.) Start here https://www.nolo.com/legal-encyclopedia/special-needs-trusts-30315.html for information about special needs trusts.
• Keep your receipts as they apply to your child and ask your accountant what might be tax deductible.
I told you at the beginning of this page that information can be overwhelming. But take information gathering seriously. It can mean the difference between service for your child which builds him/her and service which stalls him/her and frustrates and angers you.
Click on the GET ORGANIZED icon for ideas how to organize all the information you collect.
Contact me if you would like help in gathering or organizing your information.