Being the parent of a special needs child is an experience that is full of emotion, strife and frustration. Today might be a day of sorrow and painstaking amounts of patience. Tomorrow could be a day of joy and progress. The special needs parent rarely knows what to expect.
The journey of parenthood isn’t easy no matter what kind of challenges a child may face. Even the typical child will struggle at times and face difficulties that can make a parent’s heart ache for them. But the battles that special needs children must wage are tiresome persistent. They’re unfair and unforgiving. As the parent to one of these kids, it’s difficult to watch a child be tested in ways that the parent already knows they may not overcome.
In the United States, 14 percent of children have special needs and the rate has only been on the uptick for several years. For the kids, everyone else is making their lives very hard. A lot of things are actually harder for them — things that the rest of us take for granted. When eating, sleeping, going to the bathroom, bathing, walking, and talking are so hard that they dismantle a mother's life on a regular basis, it can be easy to want to give up, but these parents perservere.
When a mother and father first welcome their new baby into the world, none of them ever expect that sweet baby to be burdened with the struggles that come in tow with disorders like Downs Syndrome, autism, Cystic Fibrosis and more. But the statistics speak for themselves. With two parents to each child, that’s a lot of broken hearts in America bringing up special needs babies.
17 Tanya - My Life Disappeared
Shortly into her life, Tanya’s daughter had earned herself diagnoses ranging from chairi malformation and brain lesions to central apnea and Sensory Processing Disorder. Tanya said something to me that really resonated and that I think all special needs parents can relate to.
She said, “As life has done on with all of her therapies and appointments (most weeks 8 or more) I feel like my life has slowly disappeared.”
Isn’t that the truth? Kids of any kind take up a lot of time, but to a special needs child, parents are the oxygen tank. Our work never stops. She resents that she has no time for friends and feels like those she has tried to maintain never really understood what she was going through.
There’s a reason most special needs parents end up congregating with others who have like issues. She hates her messy house and how she never has time to shower. It struck a chord with me when she remarked about how it can be hard to even find time to cook dinner some nights, much less eat it.
This is the reality of a house with a special needs child in it. Most people who see Tanya, would probably never know she got two hours of sleep last night and has endured two doctor’s appointments, therapy and three meltdowns all before lunch. It might’ve taken six clothing changes for her daughter to get out the door because nothing felt right.
She wishes she had some quiet time and normalcy.
16 Heather Green - The Pressure From Doctors Is Unreal
Around four months of age, Heather’s daughter started screaming and wouldn’t sleep. She was worried she may have even had a seizure. The doctors diagnosed her with life-threatening reflux. Further testing would uncover that part of her intestines were detached. She ended up aspirating fluid into her lungs and developing pneumonia, failure to thrive and cecum.
This would mark the start of a long road of unexplained health events and diagnoses that have taken Heather and her family to the place they are now.
By two years old, autism had become apparent. It is clear that she is suffering from seizures now that she’s older. Heather’s sweet little girl requires medication just to sleep. She has a movement disorder on top of autism, and the diagnoses and treatments are sure to continue as she relentlessly pursues the correct path for her child.
She felt pressured into making some of the decisions that may have a played a role in the issues her child struggles with now. Heather isn't the only mom suffering through sleepless nights. Sometimes she finds solace in letting it all out when she sneaks off to the basement to be alone and cry. The comments from other parents hurt. She's just so tired of it.
15 Jennifer Morgan - I Try Not To Blame Myself
Jennifer’s son was slow to develop from early on. He didn’t even attempt to get onto his knees to crawl and his weight was always below average. It’s been a long road for Jennifer as the mother of a special needs boy. Most of it was met with frustration as the roadblocks to development continued to pile up and doctors seemed to have so few answers.
Some doctors remarked that they thought he could have autism, but they weren’t in a position to diagnose it before he reached a certain age. It’s taken years to get to where they are now with a diagnosis of Autism with Sensory Processing Disorder, in addition to Attention Deficit Hyperactivity Disorder and Pervasive Developmental Disorder.
out of all the children among the age group of 4 to 17 in America, 11 percent of those are said to have ADHD.
Every day is hard. Jennifer and her husband succumbed to medicating him after a year of fighting it. The issue came to a halt when they realize they not only had to worry about their son’s wellbeing, but everyone else’s when he had a meltdown in school and began throwing desks and knocking over bookshelves.
Sometimes in a rage he will tell his mother she is the worst mother ever and how much he hates her. Jennifer struggles not to blame herself and worries her son’s harsh autism-fueled words may be true.
14 Christi Richardson - A Whole New Level Of Tired
Christi wants other parents who don’t have special needs children to know that while she recognizes how exhausting parenthood can be, having kids with special needs takes it to a whole new level. She never has time for herself. Still, every moment she spends with her son is a cherished one — mostly because it makes them both so happy.
It’s a different kind of heartbreak to have a son like Christi’s. He has an extreme speech delay. As a result, he struggles to speak. To anyone else, this may seem like a minor issue in the world of special needs, but when you really look at the life os someone with a speech delay, you can’t help but feel the grief and frustration. Imagine not being able to effectively communicate feelings and needs.
The first time her son said I love you, Christi cried. What mother wouldn’t? While she acknowledges that it’s difficult to work with a child who is challenged in these ways, and she’s lost many nights of sleep doing just that, she also know that it’s worth all the time she spends on it because her son is who he is because of it.
13 Summer Ginn - All My Self Doubt
Summer’s story touched home for me. Her words cut to the truth of what likely every special needs parent goes through wondering what they could have done differently to have spared their child and themselves from the lives they have now. If she had just changed one thing, would it change where they are today?
Sometimes she pities herself, and you know what? It’s okay. This new world of occupational therapy and sensory toys and having to do everything a certain way in order to bypass the wrath that is a meltdown from a special needs child is tiresome, angering and scary. It’s an uphill battle with fewer resources than you think at the special needs parent’s disposal.
Summer’s daughter has autism, and while the war she wages sways back and forth from being one she is fighting against herself to fighting with the rest of the world, she is clear on one thing: she’s fighting for her daughter. Whether it’s her fault or not isn’t what matters though it will continue to plague her, but giving up isn’t an option.
12 Annie - I Can't Help The Grief I Feel
When Annie’s daughter cries, Annie cries. It might sound like your typical journey through parenthood on the surface, but her tears are the result of a complex mixture of exhaustion and grief. She grieves the loss of the life that her child won’t have. She blames herself and feels like she has failed her daughter when she can’t stop the crying.
One of the biggest struggles for Annie is the anxiety she deals with when doctor appointments arise. She frequented many of them for more than three years. Despite the regular visits, she felt terror and anxiety each time. She worried what they would say this time; what would be wrong today?
While the nurses who read this might be surprised to hear it, Annie says it takes all she’s got not to attack the nurse each time she comes in to draw more blood for more labs for her daughter. She’s so over watching her daughter struggle and suffer. She wants other parents to know it doesn’t bother her when you stare, and she encourages questions, but the rude comments cut her to the core.
11 R.M.I. - Jealousy Of Other Parents
This momma admits she’s green with envy. Her jealousy doesn’t stem over things that many other parents are worried about. She isn’t eyeing the latest new car she wishes she could afford. She’s not wishing she’d hit the lottery or wondering why others were blessed with luxuries. The others, they don’t know what luxuries they have. Luxuries like perfectly health children.
RMI’s jealousy stems from a place of sorrow. She wishes her daughter hadn’t developed failure to thrive at 7 months old. She wishes her little girl wasn’t set up from birth to live with Cornelia de Lange Syndrome (CdLS) for the rest of her life. CdLS is a disorder that affects physical growth as well as emotional and developmental progression. GERD is a side effect for roughly 85 percent of people who suffer from CdLS.
In times of jealousy, RMI has to remind herself of her daughter’s accomplishments. Many special needs parents struggle with this. They know that to outsiders, saying a new word or using a spoon correctly at two or three years old may seem meek and like anything but an accomplishment. But to the special needs parent, these develops are extraordinary progress.
10 Jennifer - My Child Deserves More
Jennifer’s life is like many others in America, but that certainly doesn’t make her ideal. Special needs parents are still in the majority. We are still the moms and dads who cry themselves to sleep and hope tomorrow is better. We are angry, too. We are mad that this is our child’s reality. They deserve more.
Jennifer knows her anger comes from the unjustness that is special needs. But it’s so hard not to feel angry at her child at times. She’s mad that her daughter has to be so controlling just to get through the day. Does it really matter which spoon she uses at dinner time? She’ s mad when she can’t control her daughter in the midst of a tantrum.
She’s mad at God and that she can’t understand what the purpose is of inflicting her child with Sensory Processing Disorder.
She’s mad that her other daughters get to be normal and this child has to struggle so much. She’s mad that her in-laws make comments that imply the problems only exist at home — with her. She’s mad at her daughter for keeping herself in check during school hours and unleashing her fury at home on Mom.
She’s mad that adults are so oblivious to SPD and that we all have more than five senses. She’s mad at SPD for stealing her sweet child from her. It’s enough to make anyone mad, in more than one way.
9 Amy Forton - My Heart Aches For My Son
Amy’s son is the difficult child in class. He’s the one other kids snicker about. He’s the one they come home and tell their parents about because he misbehaves so wildly that his stories are worth telling in the mind of a child. He has meltdowns that cause him to scream, cry out and throw things.
She struggles inside with thoughts about second-guessing her decisions, like the one she made to adopt her son. She admits to pondering what her life might be like if he wasn’t in it. But she can’t let those thoughts or the guilt they may bring forth get in the way of her parenting her son to the best of her abilities.
So, she reminds herself that her son might be the kid that licks doorknobs because it’s cool, but he’s also the boy who will run up to a stranger and hug them while telling them how beautiful they look. He may throw himself on the floor kicking and screaming during a meltdown, but when he’s at his best it’s truly an amazing sight.
She recalls how her son almost lost his life not long after birth and the same heart that made her ache for him then aches for him now.
8 Kathleen Steinbaecher - My Grandson Was Born An Addict
Kathleen’s story is a little bit different. She’s a grandmother to her special needs child. Currently, she and her husband are in the process of adopting him. He was born addicted to cocaine and opiates. Having spent three weeks in the Neonatal Intensive Care Unit, he went home with Kathleen afterward.
Though she loves him as much as any mother would, Kathleen often feels like running away from her life. It’s not her grandson that she wishes she could escape from, though. It’s everyone else. It’s the therapy appointments and the doctors. It’s the rude people who take it upon themselves to analyze her situation and blame her for her grandson’s issues.
He has Sensory Processing Disorder with possible ASD. In addition, severe neurological ADHD has made life trying every day. Kathleen wishes it was as acceptable to hit people as it was for them to say the cruel things to her that they do.
7 Maxwell Hamilton - All The Broken Things
Maxwell’s confession is a hefty dose of reality for parents out there who are fortunate enough that their kids never break more than a few toys. Parents of special needs kids worry about them breaking their bones, their sister’s bones, the dog’s neck, the dining room table during a meltdown over not wanting to eat their vegetables, and more.
Maxwell was actually delayed in contacting me to give her confession after her son once again put her phone in water. Destruction is in the nature of boys and girls with ASD and SPD. This momma lives on a fixed income with the son that doctors told her she’d never have, and it’s a struggle every month just to get by.
It doesn’t help that she’s constantly having to figure out ways to come up with the money to replace the things that her young man, now 10, manages to break. The washing machine now only has one working setting. They’re on the 17th phone this year — no doubt a few were lost to floods — and their fourth television. Maxwell wants others to recognize the financial burden that these disorders bring.
6 Anne - Other People Just Don't Understand
Anne isn’t so sure other parents understand how hard it can be to manage a household and family when one part has special needs. When her second child came into the world, it wasn’t well-received by her first baby who had been diagnosed with Asperger’s at 2-years old. There were times when she got through the day on less than an hour’s sleep from the night before.
Family get-togethers and outings with friends just weren’t an option. Just getting through the grocery store could turn a seemingly stable day into a disaster. She too struggles with the glares and glances from others who just don’t get it. She stated to me, “Our lives were consumed by his struggles.” She isn’t alone. Anne’s relationship with her own brother has fallen apart since he wasn’t understanding of why she couldn’t make it to his wedding.
She’s wavered from feeling like a failure and crying herself to sleep to being the strong and supportive mother she has to be for a son who self-injures when having a meltdown. She describes their lives at times as living nightmares. She’s grateful today for the advances they’ve made toward recovery through biomedical treatments, but it was a high price to may financially to get there.
5 J. Woods - Who Will Love Them When I'm Gone?
This mommy’s biggest fear isn’t uncommon at all. She’s worried for the future of her child. Many of us are. We are concerned about who will take care of our babies when we aren’t around anymore. We worry about who will love them and if they’ll be taken advantage of. We have to. We’re their mothers.
Who is going to put up with the kind of torment that raising a special needs child entails if not us? J. Woods is just another special needs mom fighting to stay afloat in a society that doesn’t really cater to kids like ours. She’s scare no one is going to see beyond the diagnoses.
Her son lives with ADHD, SPD, Obsessive Compulsive Disorder, and Oppositional Defiant Disorder. What if that’s all anyone ever sees in him? What if she’s the only one who gets to see the loving and caring person that her child is on the inside? What will become of him if no one recognizes his spirit and the soul that warms her heart throughout the good and the bad days? What then?
4 Amber McElroy - Sometimes I Don't Understand My Child
Amber hit the nail on the head with her confession noting that life with a child on the Spectrum is harder because we don’t always understand what he wants. This is the crux of Autism. Communication breakdown leads to catastrophic meltdowns. It’s important for even the most typical of people to remember they too wouldn’t be very happy if they suddenly lost all ability to convey what they want or need to others.
Amber painted an accurate picture of how difficult it is to keep your cool when your child is throwing a very public tantrum and other people are looking at your like it’s your fault. Instead of being shown compassion for what you’re having to endure raising this child, you’re chastised for making other people experience it for a few moments.
Amber worries her son will be bullied in school and won’t make friends easily. She questions if all she is doing for him will ever be enough and often thinks she’s not the best mother for him. She loses her temper when he won’t stop screaming sometimes. She tries to remember that this is a learning curve for both her and her son.
3 Stacey Williams - Waiting For Something To Set My Child Off
Stacey finds it hard not to compare her children at times. With her fifth on the way, she is saddened by watching her three-year old on his bad days knowing that he will likely never have the life that his siblings do. He has ASD with sensory issues and is non-verbal, too. That’s right, he doesn’t talk.
She too has suffered from the looks and rude comments from onlookers when her son has a meltdown while they’re out and about. She wants so badly to fix the issues that plague her son. It’s hard living her life and not knowing what she or someone else -- or something -- might do that could set him off.
She's alsofrustrated about therapy interventions, noting that their aim is off. She wishes they’d focus on helping the child rather than trying to get them to blend into society and look normal.
The cost of caring for her son hasn’t gone unnoticed by Stacey, either. The therapy toys and tools made today for these kids can be exceptional resources, but so few families can afford them. Remarking that her life as the mother of a special needs child is exhausting, Stacey wishes there were more people working in the treatment field who honestly had a love for the children than the industry.
2 Jules - Helping My Children Has Bankrupted Me
Jules has three children on the spectrum. Her oldest daughter is 16 and diagnosed with learning disabilities, as well as social anxiety disorder. Her middle child and only son is 13 and her youngest and second daughter is 7 with oodles of allergies and mold that has caused her to develop eczema.
Jules never thought she would be where she is in life at 37-years old with three disabled children and filing for bankruptcy as a result of the expensive life that is raising a child on the Spectrum. The lifetime total is somewhere around $1.4 million for just one kid with an ASD.
She isn’t sure she’s doing a very good job when she can’t manage to get her kids out of the mold-laden home that is making them worse. She wishes her parents were more involved with her kids and that the autism community focused more on the importance of limiting processed foods — one thing she does that she admits helps all of her kids.
At the end of the day, she prays that she’s doing them justice. In the wake of autism exhaustion each day, she and her husband of 14 years struggle to stay together if only because they know they could never do this alone.
1 Autism Momma - My Hands Are So Full
This momma certainly has her plate full with three sons who all have special needs. Her oldest lives with Autism Spectrum Disorder and Sensory Processing Disorder, a subset of it that only further complicates his world. Her middle son also has SPD and apraxia of speech, which means his brain has difficulty signaling the parts of the mouth and jaw that are necessary to produce sounds, syllables and words. Her youngest son also has SPD.
It is hard for her to maintain patience on a regular basis. She admits to watching families with typical kids playing at the park or zoo and daydreaming about what her life would be like if her children were that way. She wonders what their lives would be like, too. It’s an ongoing internal battle to accept that her three boys will always have to struggle this way.
Most of the time it’s a meltdown from one of her three sons that pulls her out of her daydreams and back into the harsh reality that is the life of a special needs parent. She conveys the utmost exhaustion when confessing she feels like she’s walking on eggshells in her own home.
In her reality, she must worry whether or not the noise level is okay for her oldest, if her favorite fall candle scent will be overbearing for her middle son, or if the sound of the shower she’s looking forward to will send her youngest into a downward spiral.