Being the parent of a child with a disability is a challenging journey. From the first moment of diagnosis, whether at birth or later in development, parents are flooded with many different feelings; love for their child, concern for their future, anxiety about what the diagnosis really means and grief for all the expectations they had for this child that may never come to pass. Parents are often in a state of shock or denial and what makes this particularly challenging is that each partner may move through this process differently. This is also true for extended family, so just when the parents need the most support they can find that everyone views their situation in a different way and are at different stages of acceptance. Anger at the doctors, the school and other family members who disagree with the diagnosis can create a tense situation for all involved. The following suggestions have been gathered from the many families I have worked with who have travelled this road, including my own journey with my now 38-year-old daughter who has a developmental disability.
1. Having a child with a disability can be an ongoing grief process. As other children meet typical developmental milestones you are reminded that your child is on a different path which can create a feeling of loss. Allow yourself time to grieve and realize this is a normal reaction to loss and doesn’t mean that you don’t love your child as they are.
2. Being on a different path than other parents can create isolation. So can spending free time taking your child to specialists, therapies and the daily caregiving of your child’s physical needs. It is important to “find your tribe” of other parents going through similar experiences. That is the best emotional and practical support there is. There are many organizations for parents that offer information, emotional support groups and education that can break the isolation you feel.
3. Remember that parenting a child with a disability is a marathon, not a sprint. It is easy to get burned out trying to solve all the issues that arise, but you are in this for the long haul. It’s important to do whatever self-care you can manage and to create respite for yourself. Often family members are afraid to help, so it can be important to hire outside help or find organizations that offer respite for free on a regular basis.
4. Be careful of the “divide and conquer” solution to daily living. Due to the overwhelming needs your child may have it is common for one partner to take on all the primary caregiving and trips to the doctors and specialists. The danger in this is that one partner becomes the “expert” and they other one only gets their information through them. It can be very helpful for both parents to attend important doctor’s appointments or IEP meetings so both of them can interpret together what they are hearing from the professionals that work with their child.
5. Remember that you know your child better than anyone and it is important that you learn to trust your intuition about what helps and what doesn’t. It is impossible to do everything the experts recommend, so you may need to pick and choose what you have time for and what you think will work best. You may have other children in the family that you need to consider so you can’t take your child with a disability to every therapy available.
6. You are your child’s best advocate. It can feel like a lonely fight – but remember that there are many in the disability community that are fighting and advocating as well. It can be empowering to join them in whatever ways you can.
Below are some local resources that can help you in this journey. Don’t be afraid to reach out and ask for help!