Being the parent of a child with a special needs diagnosis comes with unique challenges. From the moment that first diagnosis is shared, to the search for care as their child grows, every step of the journey is different.
Here are some advice from three moms, Cassidy, Kendra, and Dana, who are dealing with those issues firsthand. From how they processed the first diagnosis and manage their grief, to tips for self-care and finding support, these moms are here to support others going through the same thing.
1. Processing a Special Needs Diagnosis
The initial diagnosis can provide an answer and a place to start for parents of a child with special needs. It can also open doors to getting more support, in the form of referrals to specialists and therapists.
However, the initial diagnosis can cause mixed emotions.
“The day we got Everly’s first diagnosis [brain injury] she was less than a week old,” said Cassidy. “The immediate guilt and weight of responsibility I felt as her mom was immense. I felt the conflict of gratefulness that she survived, and anger that this had happened to her.”
Often it’s not just one diagnosis.
“Over the four years of her life we’ve had many diagnosis days, and it never gets easier to hear,” says Cassidy. “It’s devastating [to be] reminded over and over that your child has more barriers, or is different from neurotypical peers.”
With every special needs diagnosis comes more grief.
“When we got our daughter’s 4Q diagnosis, we were heartbroken,” says Dana. “We grieved the reality that she would not get to do certain things, and we grieved how we thought her life would look. The loss of normal was something we grieved for a very long time — years.”
“[There’s] the initial shock and sadness of not feeling like you’ll ever get your child back from this diagnosis,” says Kendra. “Feeling that they will always be ‘different.’ It’s still something I go through – not knowing what her future may hold.”
“Some days [our grief] still feels fresh and new and can be hard to talk about, and that’s ok,” says Cassidy. “It never fully goes away, but you learn to process and deal with it as your coping skills grow.”
2. Managing Your Grief & Your Feelings
According to Cassidy, changing her perspective helped in her grieving process. “I decided that my goal for her was to help her maximize her full potential, whatever that looked like,” she said. “I was able to meet her where SHE was at, instead of having expectations of where she should be based on what’s ‘typical.'”
Cassidy goes on to add that staying off social media for a while helped her grieving process.
Similarly, Dana had to accept that her child is not going to do all the things other children do. “It took a lot of tears and hard discussions to get to that point,” she says.
“People who have not traveled this path cannot understand how hard it is to let go of how life should look and accept how life does look,” Dana goes on to say. “We love our life, we love our daughter, and we accept what comes. We do not, however, have to like it all, and we certainly didn’t get to this point without letting go of what we thought it should be.”
The first year was the hardest.
“In addition to starting my own therapy, [what helped was] finding a community that I can relate to, and having family support. The most helpful thing was building my child’s team,” Cassidy says. “Having a core group of doctors and therapists that shared the same goals helped relieve a lot of the anxiety that I felt. It allowed me to set down the need to be hyper vigilant all the time when my child was being monitored by trusted experts who would help advocate for them.”
With time, you begin to shift your focus.
“We started to focus on what she can do and the joy she brings,” says Dana. “We [gradually] came to the realization that life was different and that was just fine. The feelings of sadness, anger, frustration, and grief are strong and can be hard to navigate, but the best way I handled them was [to allow] myself to feel and sit in them until I was done.”
3. Navigating Self-Care
These moms spoke of the challenges that parents of a child with specials needs face, and how important self-care is.
“I have always tried to make my circle of friends a priority even during busy, hard times,” says Kendra. “There is mom guilt that comes with that, but in the end it is so helpful to get out of the house, go out for supper and vent to your people who…will listen.”
Cassidy adds, “I’m beyond grateful that I…connected with a therapist who specializes in trauma in moms and special needs moms. It was incredibly important to talk about the reality of my life in a safe place, to be empowered to be the best mom I could be.“
Like many moms of children with special needs, the self-care journey is not easy.
“I didn’t feel deserving of nice or extra things beyond survival, because I felt my child deserved every extra drop of time and energy to ‘compensate’ for her challenges,” Cassidy says. “I have to be intentional about scheduling time for myself. Reading books, doing crafts, or doing a skincare routine are things I prioritize.”
Dana discussed how she didn’t truly attempt self care until years after the first diagnosis. “My husband and I started taking short trips away, to work on our marriage and be together alone,” she says. She also started exercising more, sticking to a bedtime, as well as implementing schedules that helped her family feel more in control and at ease.
4. When Other Ask How to Help
First and foremost, be willing to listen and offer support. Cassidy said some of the most helpful things that people said to her were in support of her emotions, whether positive or negative. Similarly, Kendra remembers a friend who always checked in without pretending to understand what she was going through. She was simply there to listen.
Kendra adds, “Listening is such an important thing for others to understand when a family or friend is going through a child with a new diagnosis. Often I remember family members listening to me vent and cry and then offering up something after (‘well at least she’s not regressing so focus on that’). That is not what I wanted to hear at the time.”
All too often, people with good intentions often say something to make parents feel worse. Here are some suggestions about what not to say when talking to a parent, and what to say instead.
Things Not to Say:
- “She doesn’t LOOK like anything’s wrong.”
- “Everything happens for a reason.”
- “It’s God’s will.”
- “You should just focus on being grateful she’s here.”
- “I could never do what you do you’re so strong.”
- Did you try XYZ?
What To Say Instead:
- “Your feelings are valid.”
- “I am here for you in whatever way you need me to be.”
- “Your well-being matters just as much as your child’s.”
- “What do you need and how can I support you?”
Other Helpful Tips
Also, little ” survival packages” were always a day brightener and helpful ahead of long hospital stays (to include items such as snacks, coffee gift cards, or an activity book for the kids).
All agree that finding the right support network, from special education teachers to therapists and medical providers, can make such a huge difference.
Dana said her faith in God helped, as did her spouse, her family, close friends, pastor, her daughter’s pediatrician, and therapists at Anne Carlsen Early Intervention.
“We also had an amazing team of therapists at Beyond Boundaries Therapy,” said Dana. They have been instrumental in guiding us, giving us resources, and teaching us what could work.”
5. Finding Community Support
The moms spoke of the value of finding support in their community.
Find Special Needs Support Groups
“Finding support groups with other parents can be a great place to build your community,” says Cassidy. “Connecting with people who can relate…makes you feel seen as a parent. Knowing that other people going through diagnosis are feeling sad/mad, and that there’s not something wrong with you is very powerful.”
Dana adds that many social media pages and groups, such as Family Voices of North Dakota, have great resources, quotes, and stories that help. Other great pages to follow include:
- FM Special Needs Support Network
- HOPE, Inc. Adaptive Sports (local)
- The OT Toolbox
- Mrs. Speechie P.
- Sharon Mazel
- Big Little Feelings
- Inspired Treehouse
Kendra created their own epilepsy support group called “Ellis & Friends,” since she wasn’t able to find a support network at the time of her child’s diagnosis. TNT Kid’s Fitness was the perfect location, with their sensory gym and staff present to help parents feel safe while they visited.
Find Tools to Communicate with Family & Friends
Cassidy created a Facebook page for her daughter, so she could decide when and what was shared and at the pace she wanted to.
Kendra’s husband, Erik, created a blog to keep everyone up to date. It’s an simpler way to share updates, rather than having to rehash information over and over again.
Find Respite Care
Dana says, “Getting respite care was a big part of taking care of ourselves and our marriage. We have been extremely blessed with the most amazing respite care possible. My daughter’s medical team has become an extension of our family.”
“Something that has been incredibly empowering to me [was shared] by another special needs mom.” shares Cassidy. “[They said], ‘Your child today with a new diagnosis on paper is the same child you had yesterday.’ Adding a name to it doesn’t change their abilities or hinder them. It opens the door to new resources and early interventions to empower [their] success.“
Thank you to these incredible women who were willing to share their journeys with us. They welcome anyone who is looking to connect to reach out:
Beyond Boundaries Therapy & Wellness
Whether it’s support in occupational therapy, physical therapy, or speech-language therapy, the Beyond Boundaries team is ready to be part of your support team! They offer one-on-one therapy support, as well as special programs such as aquatic therapy, equine assisted therapy, Exershine camps, and more. Reach out to our team at Beyond Boundaries Therapy & Wellness at 701-356-0062, or request a free screening at www.beyondboundaries.us.