Being the parent of a child with special needs is a lot like the first day of school. You never know what to expect, and just when you think you do, it changes. Insurance renewals, IEP meetings, benefit changes, and the struggle to provide what your child needs versus what the government will assist you in getting were not in my life plan. Navigating these waters can be tough.
When my son was diagnosed with Autism Spectrum Disorder, I dove head first into the pool of “I’m going to find out as much as I possibly can”. Probably a little too quickly, but that’s okay. Fast forward two years, and I’m (almost) a seasoned vet. Almost.
Here are some special needs organizations that are helpful:
Parent To Parent
This organization has an online support group for families of children with disabilities. P2P can also match you with a “support parent” who can provide a greater level of emotional support. Parents of children with special needs often feel lonely, and this group is a great way to find people who can lessen those feelings of loneliness. www.abilityconnectioncolorado.org
This organization is specific to your state and county. ARC holds events, workshops, and programs, such as Mobilizing Families that will give you an in-depth understanding of topics like advocacy and legal issues. Consequently, if you need resources, funds, advocates, or answers to questions, ARC is there to help. www.arcjc.org
Community Centered Boards
These boards are also specific to your county. Many special needs parents are unaware of CCB’s. Your Community Centered Board will assign you a case manager, whose job it is to point you in the direction you should be going. CCB’s are also good for information on insurance carriers, Medicaid, resources, extra funding, and waivers. List of Colorado’s Community Centered Boards by county.
Peak Parent Center
Peak is known for it’s great workshops, trainings, and conferences. They cover topics such as advocacy, IEP’s, and inclusion in the school system. Their website also hosts a blog and a fantastic resource directory. www.peakparent.org
Facebook is an EXCELLENT way to find help and resources in your area. Try searching for groups with your child’s specific need or diagnosis. Other parents are probably the best way to find resource,s including support groups, childcare and/or respite care, school district information, and medical supplies. Facebook is also where you will find the most emotional support.
If you are just starting out on your journey, it’s important to understand that you will learn as you go. Don’t be afraid to ask questions. Don’t be afraid to ask for help. And finally, don’t worry about things you cannot control. Life always works out as it should, even when it doesn’t seem fair.