Being the parent of a child with a disability or special needs can be extremely overwhelming and, at times, isolating. It’s not that people don’t want to support you or be there for you, because most of your friends and family will want to support you. What can cause you to feel isolated is what comes after the diagnosis. As you learn to navigate life with a new diagnosis (learning about your child’s diagnosis, managing new behaviors, finding adapted equipment, arranging doctor and counseling appointments and IEP meetings, etc.), you may find yourself unintentionally pulling away and diving into making life work for you and your child. Or you may pull away intentionally as you feel you fit in less and less with the relatively “normal” life you led before the diagnosis. Going out in public or to a friend’s house might be a challenge you just don’t have the energy to tackle, and that’s a completely normal feeling. This mom explained why she began isolating herself after her son was diagnosed with autism, and perhaps you can relate.
One thing to keep in mind is that how you’re feeling is perfectly normal. Whether its frustration, sadness, loneliness, or even joy, your feelings as you learn to cope with your child’s diagnosis are normal. The other thing to keep in mind is that you are not alone. You may feel like family or friends don’t want you around or that you’re a burden to them as you make accommodations and changes to your life but, in most cases, they want to be there to help and support you. Be open and honest with your friends and family about what changes they can expect, and ask for their support and understanding. Also, be open about feeling like a burden. Your family and friends may not realize you feel that way and they will likely reassure you that you and your child are loved and wanted around, despite new challenges or struggles.
Besides for friends and family, you can find support, encouragement, and reassurance from local support groups. Speaking with other parents of children with disabilities or special needs “can help you look beyond your [child's] diagnosis and delight in the joys of parenthood. They have been through what you are going through, and can be an invaluable source of support”. In the Quad Cities, The Special Needs Families of the QCA offers an online support group that many parents in the QC engage in for encouragement and support, and they occasionally meet in person as well. Another option (for parents of children with Down syndrome) is GiGi’s Playhouse. They host Family Nights and Parental Support opportunities, and you can visit their programs page to learn more.
In addition to support groups, when you feel up to it you can get involved with groups like the Quad Cities Moms Blog. This group provides a blog full of useful information about events in the community and the struggles and triumphs of being a parent written by moms (and sometimes dads), including some moms who have children with special needs or disabilities. They also host regular events for moms to get together, which will provide you with a chance to interact with others moms and talk about what you’re experiencing through parenthood. While not every mom or dad you encounter from this group will completely understand your experience, you will likely find support, encouragement, and reassurance nonetheless, which is exactly what you need sometimes.
Lastly, search for organizations that can make your life just a little easier. Respite care services give primary caregivers a break and allow them to feel rested and supported, and they also usually provide skill building and learning opportunities for the participants. Many of these organizations can also offer you some assistance in finding resources to help you and your family. Many of them are connected with other community organizations and can point you in the right direction, which can be extremely helpful when you're trying to figure out where to start. There’s several organizations in the Quad Cities that can provide respite care or general assistance to you, the primary caregiver:
Hand-in-Hand offers year round respite care programs, including evening and weekend programs, and after school care so parents/guardians can work without worry
The Arc of the Quad Cities Area and the Arc of Scott County are great resources for programs and services your child may benefit from
Family Care Solutions provides in-home assistance from nurses, and caregiver/aid services, such as transportation and other daily tasks
Handicapped Development Center provides a variety of programs to help participants become more independent , such as employment and personal independence services
The most important thing to remember as you learn to navigate your life as a parent of a child with a disability or special needs is to seek support from those who care about you, from support groups, or from other parents. Parenting is already a tough job, but when you add a diagnosis into the mix, things can get even tougher, especially if you try to do it all alone. There will be times when you feel sad and isolated, and that is normal, but know there are support systems out there for you. You may not think getting a short break from being a caregiver or attending a night out with other moms will help much, but don’t underestimate the benefit of giving yourself a break. Occasionally relieving yourself of caregiver duties or spending time with family or friends can immensely improve your long term outlook. It may seem difficult to reach out or to simply ask someone if you can vent, but it’s important that you take care of yourself as much as you can. After all, you can’t pour from an empty cup.
If you have a child with a disability or special needs, how do you take care of yourself and get adequate support? Do you have any support group suggestions for other parents?