It can feeling overwhelming and daunting when you first get the diagnosis.
What does it mean?
What does it mean for my child’s future?
Am I strong enough for this? Is our family?
What can I do to help my child?
What treatments are available?
You’re filled with questions, and maybe filled with worry because you don’t know what questions to ask. But there are steps you can start to take. To help get your child the support he or she needs. To help you get the support YOU need.
- Get connected to other PIGA and CDG families. The easiest way is through social media (key Facebook groups listed here).
- Participate in the NIH CDG Natural History Study. Our family participated in July 2017, and the week-long study really helped give us a snapshot of our son’s current condition, a place to ask our burning questions to people well-educated in CDGs and a better understanding of what we could expect for the future. It was exhausting but well worth it. This page has information about the study and how you can sign up.
- Find doctors familiar with CDGs. Or, you can attend a CDG clinic and ask for advice on how to get your doctors briefed in CDGs.
- Get connected to your city or state’s early intervention program and figure out what services your child is eligible for. That may include physical, occupational, speech, vision or development therapy. Therapists can be super helpful in figuring out the type of equipment or surrounding will best support your child’s needs.
- Find time for yourself… to rest and recharge. Whether it’s relying on family or friends or a qualified caregiver, try and find ways you can step away for short periods of time. (Some states offer respite care programs or support services for families with disabled individuals.)
- Become an advocate. Learning more about PIGA and helping to make a difference in your child’s life and special needs children like yours can help you feel more empowered.
It isn’t an easy road. But learning through others, finding a solid support system and taking charge of your situation can help immensely. If you have other suggestions on steps parents can take to ease into this new diagnosis, please feel free to contact me.