Motherhood, Mental Health & Parenting Two Children with Disabilities

This month’s blog is written by Perissos therapist, Samantha Zipp Dowd, LCPC. In honor of May being maternal mental health month, Sam is sharing her motherhood journey as a mother of two children with two very different disabilities. Here is her story:

January 2022 started a new chapter in my parenting journey – becoming a parent of children with disabilities. Since the beginning of the pandemic, I had noticed that my younger child (in Kindergarten during Fall of 2020) was struggling to read beyond what was considered “normal” for her age, and we had gotten preliminary testing done that suggested a learning difficulty. In January our formal testing assessment came back, and my daughter was diagnosed with Dyslexia. Leaning into my “Type-A” personality, I immediately started researching and trying to figure out the best path forward for her. What I found was overwhelming, frustrating and at times too much to figure out. My husband and I started discussing schooling options for her to give her the support she needed. As we were working to figure out the next steps on March 10th, 2022, my son (age 9) had his first tonic-clonic seizure within 20 minutes of falling asleep. 24 hours later sitting in the ER we were told he had Epilepsy. My first reaction was bewilderment, and I asked the doctor to please repeat herself. I had just started to get used to the idea of my daughter having dyslexia, and now we had a new diagnosis to try and understand. No where in the “parenting books” or even among my mom tribe did I know where to turn for information and understanding. I felt isolated, alone, scared, frustrated, and overwhelmed. The “mom guilt” turned on, and I started to question if there was something I did to cause this in both of my children.

The first few months after my childrens’ diagnoses were a blur – I don’t remember much. I know both kids continued to go to school daily, we spoke with lots of doctors and specialists, we fit in tons of doctors appointments and tutoring sessions, I kept working full-time and we continued with our day to day. As soon as I felt one child was “stable” or on a “good path” moving forward, something would happen with my other child that needed my attention. I constantly felt like I was not a good enough mother, and I was unable to give both of my children what they needed.

Both children have faced challenges over the past year. My daughter is concerned that others in the classroom will think she is “not smart” since her brain works differently. My son struggles with feeling like he is the only one with epilepsy and not being able to do all the things that “normal” kids do. Both have added additional items to their routines including tutoring, multiple doctors and specialist appointments, extra sessions with teachers and time to rest when needed.

Over the past year, I have begun to learn more and embrace living my motherhood journey as a parent of two kids with disabilities. As I began to understand more about both of their diagnoses, I have learned that my family is far from alone, and both of my children move forward daily learning to embrace their new superpowers. One of the biggest lessons I have learned is that taking care of me is a vital part of this journey. I cannot continue to fill their cups and support their needs if mine are not taken care of. Although my internal critic (cue mother guilt) tells me that I am a “bad mom”, my critic is wrong. Taking care of me is necessary for me to take care of others. This is a concept I have recognized since first becoming a mother; however, it has never been so important as this past year. I can be a good mom AND still take time for myself. By taking care of me, I am better able to take care of them. For both my children, these will be life-long diagnoses, and so, as I am learning to embrace their superpowers, I am working to help them embrace their superpowers as well.

For other mothers whose kids have started to discover their superpowers, please know you are not alone. Here are some of the items that have gotten me through the past year:

1. Knowing I am not alone – I have been blown away by the number of people I have met over the past year that also have children with disabilities. Support groups are a great place to start, and you can ask your children’s doctors/tutors/schools for information.

2. Learning to take care of me – it is not selfish, but essential. Say no when you need to, get outside, remember to rest, move your body, nourish your body, and listen to your body.

3. Talking to someone – if you find your feelings are too overwhelming, there is help available. A good therapist can listen and validate what you are experiencing.

4. Recognizing that not everyone will understand – and that is OK! Your tribe may change after your child’s diagnosis, and while hard to go through, it is important to be around people who embrace your family.

5. If you have a partner, learn to lean on each other – no other year of marriage has been as challenging as this past year. My husband and I don’t always agree, we are both scared, and we both take out our frustrations on each other. However, we have begun to learn how to better communicate and appreciate each other’s needs through this journey.

If you are reading this and would like to know how to support another mother who has a child with a disability here are some ideas:

1. Include their children – kids with disabilities often feel isolated. Including them in activities is a great way to help build up their self-confidence.

2. Listen to her/him/them – ask her how they are doing. Get her out of the house for a walk, bring over a book you think she will like, reach out and listen. Listen without judgment, without advice, and without an agenda. Just listen.

3. Educate yourself – nothing is more isolating for a parent of a child with a disability than blank stares or misinformed questions. If you are a family member or a close/supportive friend, educate yourself about what your family/friend is going through. If you don’t know, ask.

I hope by being open about my motherhood journey someone reading this recognizes that they are not alone. Real motherhood or parenthood is not always found in books, it is found in our stories, and our support embracing the differences in those stories.