Parenting A Child With Special Needs, Continued
You’re going to feel pretty tired after fighting for this unique kid that you love to pieces. It’s really important that you find your tribe. In any community, there are hundreds of children with special needs, yet most special needs parents will tell you that they feel horribly isolated and overwhelmed. Close friends and even other family members just don’t “get” the load that they carry every day. Here in Pennsylvania we have Parent to Parent. This program matches parent mentors with other families in their community. Your children have similar or identical diagnoses. You can chat by phone, email, or in person. These parents “get” it.
Remember, Early Intervention is there for your whole family, not just your child. The program will connect you with fantastic resources in the community, including social events and information sessions. There are lots of local community groups that often offer free recreational programs for children with similar conditions.
Many parents think that their child “isn’t that bad off” and therefore they do not qualify for respite care. This simply isn’t true. Respite care is an incredible service that can provide a much-needed break on a regular schedule (ex. 20 hours per month) for any caregiver of a special needs child. Sometimes your employer benefits will cover the cost. Medicaid also provides funding for these programs. Learn more about respite resources for PA families here.
Online support groups can be a fantastic resource and offer emotional support, but also some of the best, most creative tips when it comes to caring for a special needs child. Some of my closest friends are moms that I have never met in person, but we have been raising our babies with spina bifida together. Look for moderated, private online groups, which can add a layer of security, since you are talking about your child’s medical condition.
Please know that you truly are not alone. Twenty percent of Americans have a disability of some kind. Nearly 7 million children are receiving special education services in the US. Call the CONNECT Helpline at 1-800-692-7288 to talk to Early Intervention about your child. Visit http://www.parenttoparent.org or call 888-727-2706 to get linked up with another parent who understands what you are going through.