Every parent remembers that very first time they heard their child’s diagnosis. They remember the place, the sounds, the smells, the voices. The next few hours following this may be a blur of overwhelming new information and ‘to-dos’ to keep your child healthy and safe in what just became very uncharted territory.
Eventually, the storm calmed ever so slightly, and the doctors, nurses, educators, and other healthcare professionals finally left the room and you were left to your own thoughts. In this time, I felt a deep need to connect with others who were familiar with this new “normal” that our life had become. I took to Facebook to immediately begin asking around and researching groups pertaining to Type One diabetes – specifically, parenting a young child with this disease. My sanity felt as though it were barely hanging on and so hearing from other parents who were living this life and still “ok” helped me gain my footing and feel as though I, too, could handle this.
Among the wealth of information these Facebook groups, specifically, groups called Diapers N’ Diabetes and Parents of Type 1 Diabetics, contained was a community and that feeling of having others on my side who knew this life was invaluable. Further, now I had a place to share and observe other resources that I might one day need for life with my Diabetic son.
There are links to materials such as starting the IEP process at school, setting up daycare plans and supply boxes, how to use Glucagon, and more. Having these materials readily accessible and other people to talk to make my now very-complex life just a smidge easier. So, we’ve compiled some great resources for any new parents of special needs children who might be grasping at straws like I was, wondering what, exactly, comes next!
General resources for parents of children with special needs
ADATA.org – The Americans with Disabilities Act and all information regarding rights and definitions of the law for all recognized disabilities and disorders
Easter Seals – Both nation and statewide programs available that will direct parents towards community resources including in-home care, early intervention, adult daycare, and more.
U.S. Department of Education, specifically the Individuals with Disabilities Education Act, will help parents navigate school settings for children as young as age 3 and through higher learning with specific laws and rights for their child in the classroom.
Parent to Parent USA is also both nationwide and statewide and strives to support the emotional needs of parents of children who have disabilities or special needs. A local affiliate here in New Hampshire is Community Bridges, and this organization offers that deep support and bridge to community groups and other resources.
Parent Center is an amazing resource for parents of brand newly diagnosed children who want to learn about their child’s condition and what might accompany that now and in the future. Parents can find local parent groups and resources or simply read information from afar.
Pacer.org is similar to Parent Center in that it wants to help parents of newly diagnosed children with any disability with local and federal rights and information, information specific to their child’s condition, and a supportive community. Pacer goes a little further and explores topics such as mental health and transgender challenges and rights, so nobody feels left out!
Family Voices is a nationwide organization run by families that has feet in both federal and state-specific resources for families who have children with special needs. I will add here that I follow the New Hampshire affiliate NH Family Voices and they truly are amazingly patient and helpful for parents like me who haven’t a clue as to what’s out there for aid for my son! They have discussed preschool programs, state and federal restrictions regarding discrimination for children with disabilities, and even resources for parents like me who just need a break for an hour or two a week – yes, they can help with babysitters, too!
Childhood-specific conditions with specific resources for parents
Neonatal/Monogenic/Type 1 Diabetes
BeyondType1.org – founded by Nick Jonas of the Jonas Brothers, who both advocates and supports families nationwide who have a connection with Type One Diabetes. My son received a “Jerry the Bear” from Beyond Type One that demonstrates approved sites for injections or electronic devices for medical management and comes with fun stickers and other gear for kids.
Lilly Diabetes – is a great place to start for resources on managing low blood sugar, managing Type One Diabetes in young children, and finding local and global programs that aim to help anyone affected by Type One Diabetes. Lilly Diabetes partnered with Disney to bring the program T1Everydaymagic.com, which is aimed at children and offers books about Type One Diabetes, crafts, and easy-to-read articles about things like telling friends and family about your Diabetes when you’re newly diagnosed.
Autismnow.org has so much information it is almost overwhelming, but I promise, the resources are plentiful and extremely helpful! From discussing how to catch autism early to screening, early intervention, advocacy in the classroom and beyond and much more, it’s a great site to poke around (just take it one page at a time so as not to get too overwhelmed!)
Funandfunction.com is a fantastic site for sensory items for home and school settings. They include everything from sensory swings to fidgets for their hands to materials for sensory bins and other sensory stimuli. You’ll also find weighted lap pads and blankets here!
National Association for Down Syndrome connects prenatal parents through teen, adult, or grandparents with down syndrome resources and information.
National Down Syndrome Congress is a more global approach to information, news, and resources regarding children or adults with down syndrome.
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) gives resources for parents of children with ADHD and adults in various settings including at school and in the community.
Speechbuddies has a plethora of links and information about children with speech delays including the ability to find a local speech therapist and resources that can be utilized at home.
SmartkidswithID.org – global and local programs that support parents of and children with learning disabilities. These offer great resources to stay connected, get involved, advocate and learn about learning disabilities in various settings
The absolute best advice we can give parents is to reach out to others in the beginning. Don’t wait until you feel overwhelmed by doctors and other specialists who mean well but will ultimately flood your head with brand new information that you’ll feel as though you’ll never be able to understand fully. Do some research on your child’s condition, find out what resources you can utilize immediately such as developing a 504 or an IEP for school or reaching out to a babysitter who is familiar with your child’s condition. Connect with other parents in similar situations who can talk you off that ledge you may feel as though you are on and give you some peace of mind that life can and will still be ok going forward!
This list of resources is by no means all-inclusive and we’d love to hear what other organizations you’d like to see on this list! Comment below and we will be sure to update this list!
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