Resources
Navigating the World of Special Education and IEPs
Individuals with Disabilities Education Act (IDEA) is the foundation upon which all kiddos with any disability and those who represent them build upon. It is the federal law upon which we cling for all rights of our children who may need accommodations in the learning environment.
According to the IDEA website, “The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.”
Click on the button below to be directed to their official site for a plethora of information about how to get started with special education services for you child.
Learn more about your child’s rights and about the IEP process by exploring the US Department of Education’s website.
Pacer Center offers parent training and advocacy, assistive technology solutions, and social inclusion programs for children with disabilities and their families/caregivers. Visit their website for a plethora of information by clicking the button below.
Find trainings and workshops for parents, as well as an IEP checklist and other helpful information by visiting PEATC’s website.
Hospitality Houses in the US
Ronald McDonald House Charities are one of the most recognized and typically house families of children under the age of 18 who are being treated in nearby hospitals. Click the button below to be taken to find a RMH near your child's hospital.
Most states in America have their own privately operated hospitality houses where families and patients can stay when they or a loved one is being treated, either in-patient or out-patient. Patients can typically be of any age at these facilities where they are provided a home away from home, relieving a great deal of stress in what can be a terribly overwhelming experience.
I have done research on all houses that I list in my Hospitality House Directory and each is part of the Healthcare Hospitality Network.
Below, you can find two buttons that provide you with all you need to know about hospitality houses in your area and all over the country. Please use them as a resource that I wish I would have when I needed it.
Hydrocephalus, Shunts, and Advocating for Your Child's Medical Care
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Hydrocephalus Association is one of the most trusted sources of information about the condition. Visit their site to learn anything you ever wanted to know about Hydrocephalus, including trainings and education.
Learn about the new HydroAssist app here.
From my own personal experience, Cleveland Clinic is one of the best choices for valuable information about anything medical, including hydrocephalus. Click the link to learn what their experts have to say about the condition.
Mayo Clinic is another source that I recommend when searching for the most up-to-date medical information. Their researchers are top notch and stay ahead of many of the rest in terms of current information and studies. Click the button below to be taken to their website and learn about the symptoms and causes of hydrocephalus.
Above is an actual document that was given to us while Abigail was in the NICU at Children’s Hospital Omaha that I kept on my refrigerator at home.
Shunts
As thankful as we are for medical tools such as shunts, there are always risks and complications to be aware of. Any foreign object in the human body can cause infection or malfunction so know what signs to look for, as well as when to involve a doctor.
Below are documents that were given to our family by Abigail’s physicians.
Learn more about ventriculoperitoneal (VP) shunts used to treat hydrocephalus by clicking the button below.
Mt. Sinai is a credible source to learn about shunting as well so click the button below to check out what their experts say.
As always, I recommend using Hydrocephalus Association as at least one source for understanding all things hydro related, including shunt systems so the link below will take you directly to that particular page.
Advocating for Your Child's Medical Care
"Parents! I encourage you to trust your intuition and to always speak to your child’s medical team if you feel that something is off with their health."
-Saving Abigail Grace, Chapter 5
The most important thing that we as parents of children with disabilities of any kind can do is to be their strongest advocate(s).
Take the time to learn what that means and how to be their strongest advocate in a process that can be very overwhelming, challenging, and emotional. My intention is to help alleviate some of the stress that this can place on the family by providing resources that have helped me as Abigail’s parent and advocate for the past 22 years. I will continue to update this section and if there is any feedback you would like to provide, please do not hesitate to email me. I’m happy to help and appreciate hearing from you.
Below are three sources that I personally use and recommend to you.
Epilepsy and Seizure Disorders
Follow the Epilepsy Advocacy Network for great educational information and events for patients, parents, and caregivers.
Plug into the Epilepsy Foundation’s website for a plethora of credible information, events, educational opportunities, and news about your rights. Click on the button below to go to their website.
Layla is an Epilepsy Awareness Ambassador and can help you understand Epilepsy and how to advocate for yourself or a loved one.
As the parent of a child (who is now an adult), I decided to get certified in seizure first aid and I recommend that others do the same.
Whether you are a parent, teacher, administrator, or other caregiver, it will never be wasted time to learn more about recognizing seizures and what to do when you witness someone having a seizure.
Click the button below to sign up for training that can be done from your own home.
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Support Groups and Events
