"My Child Is Starting School..."


Your child is ready to start school!  If your child is medically fragile or has a developmental disability, this can be both a miraculous milestone, and a huge challenge.  There is more to it than just registering your child and letting the school system take over. Learn about your and your child's rights and options...

The First Step

Go to the NICHCY site: National Dissemination Center for Children with Disabilities

NICHCY - link here

Learn about IDEA (Individuals with Disabilities Education Act) and the human rights legislation "504" that requires schools to have appropriate facilities for disabled students (i.e. ramp access).  Knowledge is power, and while most schools try very hard to meet the federal laws, it is important to be informed about your child's right to an appropriate, non-discriminatory education.


The Second Step

Talk to the School System - Be An Advocate!

If your child already has a case manager, then they can also help you understand the available resources in your school system, which school or classroom environment might be most appropriate for your child, etc.

Contact the school system.  There should be a "special needs program director" (or some such title) for your school system.  This person will, hopefully, be an excellent resource in determining where your child best fits for their education and what is available in your child's school system. When you locate an appropriate school (i.e. one with an autism or special needs classroom, or one that is set up with special equipment for disabled students, etc.) and classroom, make an effort to contact the teacher.  If you have an IEP (individual education plan -- see NICHCY link above), try to have your case manager or a parent advocate come with you - your service coordinator (if you have state or federal services) would be a great choice as well.  Try to get consistency between what happens at school and what happens at home (i.e. methods of communication, levels of care, etc.).  

Remember - part of advocating is diplomacy!  Going in with guns blazing at every little thing might win a battle, but it could lose the war if you get labeled as a "difficult parent."  This isn't to say you shouldn't stand up for your child's rights, and if there is a serious problem (i.e no wheelchair access, or inappropriate placement of your child), you can approach it seriously while having a good relationship in place with the people involved.

See about the school's policy for observation - try to schedule a time to be either a classroom volunteer or to observe your child in the classroom.  It is important to see first hand how your child is doing in their school.

 The Third Step

Keep Good Records - Follow-Up on Plans

Part of any parent's job is to make sure they keep track of their child's school records.  In the case of parent-caregivers, there is MORE paperwork (especially if you have an IEP) and more follow-up.  A plastic, portable accordion file folder with multiple pockets is a good investment for both your child's medical records and school records.  Check to see that the IEP goals are being worked on, which is the whole point of setting them!

 The Complete Caregiver Resources

Go to our General Parent-Caregiver Resources page

The Complete Caregiver Journal Workbook can help you organize your child's care and your self-care

You can email Lynn at lynn@thecompletecaregiver.com (link at the bottom of this site)

OR use the Ask Lynn forum section for more specific answers to your personal situation.  She cannot guarantee she'll know the exact course for you to follow, and she won't give medical advice, but she will draw from her experience and research to help you in any way she can.  This is a FREE service!



  (These statements and suggestions are in no way intended to be construed as medical advice or as advice from a medical professional.)


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