We recently celebrated Mother’s Day. A wide range of emotions are experienced on the day set aside to honor moms. In many groups of people, you will find those who adore their moms and cannot wait to celebrate them. There are moms who appreciate reflecting on mothering whether their children are babies, toddlers, elementary, middle, or high school students, young adults, or older adults. There are also those who are missing moms who have passed on. Sometimes, Mother’s Day is a very painful day for those whose moms are not or were not a positive part of their lives. Too many difficult moments come to mind leaving heartbreak behind.
I want to take the time in this writing to honor those moms whose children live with disabilities of all kinds – the disabilities that are obvious and the disabilities that are hidden and not obvious…until they are.
Being a special needs mom is hard. Our hearts are so very tender because of the experiences we live out with our children. This is true for most moms in general, but for the mom who parents a child with disability, this life can tear out our hearts and stomp all over them because of what our children have to endure.
And so…this writing is for you – Special Needs Mom – Mom whose child (whether still little or fully grown or anywhere in between) is living with disability.
I see you. I hear your joys and your hurts. I am you.
There is a uniqueness to this journey that brings with it so much deep joy and also heart-wrenching pain.
I reached out to our online community and asked moms to share some of their deep joys and deep hurts.
While I know that your story is your story alone, you may be able to identify with some of these sentiments.
I will start with the struggles – the pain – the hurt — and finish up with the deep joys.
Communication
There is a common thread of the perplexities of communication concerns – so many details to check out, pursue, discard — methods that have worked in the past but are no longer working as well as methods that have not worked before but seem to be picking up in this season of the child’s development. A mother’s heart so wants her child to be able to communicate. One mom shared that this dilemma involves “a lot of acceptance of what I do not fully understand and learning to love and connect on her terms.”
Education
Let me start this section by acknowledging that there are administrators, principals, teachers, counselors, school nurses, and other staff who are industrious, diligent, and working hard for the benefit of our children. Thank you. We moms are truly grateful.
On the other side of that coin, I hear so many agonizing stories related to children with disabilities in the school system. School often is a place of disappointment, frustration, fear, neglect, and misunderstanding for our kids because of the adults in charge who are commissioned to lead our students and don’t do it well. These kids also often have to deal with the anguish of unspeakable bullying from peers. Is it any wonder why the mama bear comes out full force in protection of her child?
Developmental milestones
Watching other children step into each typical developmental milestone on time while your child does not — creates its own painful sorrow. Moms of kids with disabilities often spend countless hours and energy researching and studying and combing the world for resources to help their child. They beg professionals of all shapes and sizes to intervene and help. They often end up exhausted and in poor physical and sometimes mental health from all their striving.
Medical ableism
Just like I know that there are school personnel who are kind and efficient with children with disabilities and their families, there are medical personnel who also work hard to bring the best medical care they can – for them we are truly grateful as well.
However, it is also known that there is a great deal of distress happening as a result of less than optimal and sometimes really awful care of children with disabilities in the medical field.
One mom shared that her deepest hurt comes from “all the traumatic memories my child and I have from ignorant and ableist hospital workers of all kinds.” This has been going on for this mom and child for the past 25 years – and they are not alone.
I recently read an article by The Arc that came out in January of this year (2024) entitled: “He Isn’t Worth Helping” – Devastating Stories of Medical Ableism. https://thearc.org/blog/he-isnt-worth-helping-devastating-stories-of-medical-ableism
Here are some examples from the article:
- “Most crucially, we included direct stories of discrimination collected from people with IDD and their loved ones nationwide. Here are a few of their stories.
- A parent in Washington state has been told by doctors and health care providers that their child with Down syndrome “isn’t worth helping… isn’t worth saving.”
- A child with autism in New York was denied care from a pediatrician for basic primary care services out of concern that his care needs would “overwhelm” the pediatrician’s practice.
- When her son with Down syndrome experienced febrile seizures and stopped talking, his parent was told, “He has Down syndrome. What do you expect? They don’t talk.”
- People with IDD are frequently denied clinically-appropriate treatment that would be offered to a person without IDD. For example, a parent in Connecticut was told by multiple doctors that her 10-year-old son’s chronic joint pain “is part of his disability” or “growing pains” before finally receiving a Lyme disease diagnosis three years later and being told the damage is permanent.
- A parent in Maryland reported that it took 6 years to find a therapist for her daughter, who has Down syndrome. “[My daughter] is verbal but it is difficult for her to verbalize her feelings… I thought she had been sexually assaulted. I was finally able to get her [help], but it was temporary.”
- Accessing mental health and dental services are particularly challenging for people with IDD. For example, Michigan parents of a young child with autism who was denied service by a dentist, were “dismissed with a warning not to come back until he no longer expressed the behaviors of an autistic child.”
I could go on and on reporting the deep hurts that moms experience and express as they love and support their child with disabilities. But, what I know is that the same moms that shared these deep hurts were also quick to share some deep joys.
Having spent a good portion of our Amy’s 29 years interacting, supporting, and collaborating with other parents of children with disabilities — hidden and obvious, I have grown to know and love some of THE most resilient people on the planet.
One mom said this, “Deepest hurts are often the avenues through which He (God) works our greatest spiritual joys…leading to greater compassion and desire to love people where they are in practical ways.
It is true. Out of some of our deepest pain and agony comes our greatest joys. For me, my deepest hurts in parenting a child with disabilities have sent me running into the arms of Jesus, my savior, shepherd, and friend. I have learned through the struggles that I can trust God. I have seen His faithfulness repeated time and time again.
I noticed a pattern when reading over the posts from moms sharing their deepest joys and deepest hurts. Often their deepest joys came out of their deepest hurts. For example, when a child has struggled so much with communicating, a deep joy comes from seeing that same child make strides toward greater communication.
Another example is when we agonize over major delays in development, great joy comes with every little victory. When our children overcome challenges and accomplish milestones, we rejoice in those feats because we know it took an amazing amount of courage, skill, or strength and a whole lot of perseverance.
When we think our child cannot accomplish a certain thing because of their disability and then we see them thrive through the use of assistive technology or extra support or alternative educational settings. Through these difficulties rises great success.
One mom shared that she has joy over “how God leads and supports us in all of our weaknesses”. She has joy at how “He strengthens our faith through our weaknesses and allows us to understand more of who He is through things the world calls foolish or disposable.”
And so – I honor you Mom of a child with disabilities. I want to hear about your hurts. I want to see your pain. I want to rejoice when you rejoice over what may seem even the smallest victory because every step moving forward is a tremendous victory.
You’ve got this Mom. It is not easy. There are hard days to come. But, you are not alone. First of all, Jesus is waiting to love you. Afterall, His time on earth found him caring for, healing, saving, loving people of disability around every corner. That is a Savior, Shepherd, Friend we can lean on. You are not alone also because there are many of us here walking a similar journey.
Let’s walk together.
Much love,
Julie
CONNECT WITH US:
We invite you to connect with Tom, Julie, and Amy through:
Email: champions4parents@gmail.com
Phone: 410-746-9010 (Voice or Text)
Facebook: facebook.com/Champions4Parents
Don’t forget our website: Champions4Parents.com
And check out Amy’s websites at
AmyChristineMeekins.com/
Amystories.wixsite.com/heartrecharge
If you would like to support us financially as we provide love and support to Parents and Caregivers as well as Ministry Folks who serve families impacted by disability, please go to our donor page on our website: Champions4Parents.com/donate
