‘Flesh was hanging off the roof of his mouth. ‘Your son has no immune system to fight this.’ We were trapped inside the house for months in total isolation.’: Mom to medically complex, autistic sons urges ‘find your village’

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“I’m Celeste, just a regular mom trying to raise kids in this world of chaos. You’ll usually catch me rocking a messy bun, 3-day-old hair, and black leggings that were carefully placed at my doorstep by Amazon. I’m entirely too dependent on iced coffee and if it wasn’t for the crockpot, my family would hardly ever experience a home-cooked meal. I’m a mom of 4 children: 3 boys and 1 girl. What makes my story of motherhood a bit different than your everyday mom is I am a mother to two special needs children.

Our two oldest children are considered medically complex and are also on the autism spectrum. Our story began like most–boy meets girl, and the rest is history. My husband and I met in 2007 and were married in 2009 at the ages of 25 and 27. We couldn’t wait to start a family. Adam and I conceived on our honeymoon but miscarried around 16 weeks. After two more early miscarriages, we finally got pregnant with our first child, a boy! We were elated, ecstatic, really. After a year and a half of heartache and disappointments, we couldn’t wait to meet our rainbow baby!

Courtesy of Celeste Hensley

Jax was born in March of 2011. He was 9 pounds, 15 ounces of pure love. Jax developed a rash and fever just hours after birth. The pediatrician ran several tests, but everything looked fine. Jax’s fever broke and the rash finally calmed down sometime the following day, so we were able to go home. Little did we know, this would begin our journey as a special needs family. Even though he was constantly sick, he was just so content. He didn’t cry, but he didn’t laugh either. As a new mom, I just assumed this was normal. I had no idea that lack of emotions, along with physical delays, like not being able to hold their own bottle, was an early sign of autism.

Jax hardly vocalized as an infant and when it was time for him to talk, he would only make the same sound over and over. The first 3 years of his life were the most difficult. We were in the pediatrician’s office almost weekly, sometimes multiple times a week. Some of his symptoms were high fevers (103 to 105), rashes, blisters all over his body and even in his mouth, nausea, vomiting, febrile seizures, passing out, and joint pain. We essentially lived in and out of the hospital with him, too. We couldn’t even take him to the grocery store without him catching some sort of virus.

He was also experiencing some developmental delays, but we were so overwhelmed with his health issues, that developmental milestones seemed to take the proverbial ‘back burner.’ By the age of 3, we were told he had no immune system. I soon found myself in isolation from the world. At one point, we were homebound for 3 months! These unnamed flares were terrible. I remember the fevers being so high, it was almost impossible to get them to break. We would have to feed him Pedialyte through a syringe every 15 minutes just to keep him hydrated. He couldn’t eat because the oral lesions were so severe. I remember literally seeing the flesh hanging off the roof of his mouth on more than one occasion.

Courtesy of Celeste Hensley

Those 3 years were dark times. No answers and no relief for our son. We felt so helpless. After traveling hundreds of miles and spending countless days in various hospitals doing test after test, we started to get answers and even find treatments that helped. Jax’s official diagnoses are autism, juvenile psoriatic arthritis, Kawasaki disease, an autoinflammatory fever disorder called TRAPS, and chronic herpetic outbreaks. Let me take this time to remind everyone not to kiss babies. When babies or people with compromised immune systems get a cold sore, it’s not just on the lips. Jax takes medication every day to prevent an outbreak because cold sores literally cover his body.

In the midst of trying to be a normal family of three, we suffered three more miscarriages. Losing those pregnancies seemed to increase our desire to have another baby. It’s weird how that works. Here we were, emotionally and physically exhausted, yet still yearning for another baby. I should mention, I also have juvenile psoriatic arthritis, and after telling my rheumatologist about the miscarriages, he discovered I had a clotting disorder called antiphospholipid antibody syndrome. Without proper care and medication to thin the blood, blood clots form in the placenta, forcing the pregnancy to end in miscarriage. We found a reproductive endocrinologist to help us conceive and keep a pregnancy. It was a brutal year of fertility treatments and trying, but worth it.

In November of 2013, our sweet Sam was born. While a bit smaller than his older brother, he was still quite a chunk of love, weighing in at 9 pounds 10 ounces. He was perfect. We were so relieved to find out Sam seemed to be healthy. Sam was able to breastfeed, and even though he refused to sleep, he was still such a joy. Everything changed the day I found blood in his diaper. He was only 2 months old! The pediatricians excused it as a food allergy because blood in the stool is super common with food allergies. He also experienced chronic diarrhea and stomach pain. By the time he was 9 months old, he was going through 15 to 20 diapers a day! Let me tell you, I gave up on cloth diapering with that one. My sister has Crohn’s Disease, and so my heart knew this was most likely Crohn’s as well. He saw a pediatric gastroenterologist at around a year old. Each time I mentioned Crohn’s, they would explain how incredibly rare Crohn’s was at this age. It is rare, by the way. Like, really rare.

Courtesy of Celeste Hensley

After trying and failing an elemental diet, our little fighter had an NG tube placed. He was losing weight daily. Sam’s GI agreed, doing upper and lower scopes was the next step. Sure enough, the images and results of the biopsies were not surprising. He had Crohn’s. To be more specific, very early onset of Inflammatory Bowel Disease. After several hospitalizations, labs, and failed treatments, he was finally on the road to remission, thanks to EEN (Exclusive Enteral Nutrition) and methotrexate. He had the NG tube for 9 months before having a G tube placed. Sam is still fully dependent on his tube feeds as his sole source of nutrition. Sam is also on the autism spectrum, but he’s very high functioning. We consider him to be our sensory kiddo. He’s recently been experiencing migraines and has a couple of seizures, but the meds are helping.

Adam and I agreed, we felt like we were done having children. We experienced two more miscarriages, so we considered a vasectomy just so we didn’t have to worry about the heartbreak of pregnancy loss. Our unexpected pregnancy number 11 made it, thanks to blood thinners and the help of our RE! Hank was born in October of 2017! Soon after that–OOPS! This is a joke, right? Baby number 4, a girl, arrived in August of 2019. That vasectomy we had considered happened before the birth of baby number 4. I’m not sure what happened. I mean, we know how it happened, but it’s like getting older, gaining weight, and living a stressful life boosted my fertility.

If you’re struggling with infertility and miscarriages, know you are not alone! 1 in 7 women experience the same thing. If you’re like me, I just sort of expected to get married, start a typical family, and raise healthy children.

Courtesy of Celeste Hensley

Nothing really prepares you for the many ways special needs children can impact your life. We currently take everything day by day, and sometimes even hour by hour. The life of a special needs or chronically ill child changes constantly. We rarely make plans, because we usually end up canceling. You’ll rarely find us in a restaurant and we usually shy away from large public gatherings, because, well, autism and germs. Being a special needs family has changed our lives in many ways, but more specifically, I want to mention two aspects of our life that have changed the most.

As school-age was quickly approaching, we placed Jax in a self-contained classroom. Shortly after starting, his flares were increasingly worse. He was missing weeks of school at a time, and he began self-harming. This was new for us and him. Being in school just made the autism worse! We tried again for K4, but the same thing happened. Jax would come home an emotional wreck. He would beat his head against the walls, floors, and tables of our home. He would rip out his hair and scratch himself. This just wasn’t typical for him. He was still sick, too. After consulting with his pediatrician, rheumatologist, and psychiatrist, we were told it was best to homeschool Jax. His life depended on it. I never planned to be a homeschool mom. The desire just wasn’t there.

I went to college, got a degree, and assumed I’d be working while my children were in school. Jax’s autism and compromised immune system made going to school impossible. Sam struggled to find a preschool, too. He had rectal colitis, which made him incontinent. He was also tube-fed. While his disabilities qualified him for several special schools, he didn’t qualify intellectually. We believed Sam deserved age-appropriate education, so we enrolled him in a private preschool. They made an exception to the strict potty-training policy if my mother-in-law or I would stay close by, in case he had an accident.

Even though he missed some days, the first year seemed to go well, but thanks to a Crohn’s flare, we had to withdraw him early into his second year. I mean, why pay for a private school you can’t even attend? Feeling defeated, I came to the harsh realization there really wasn’t a school for kids like ours. There’s usually a school for the severely delayed or autistic. Kids with minor disabilities and illnesses, or high functioning autism, tend to do well in mainstream classes. I found, in our location, there really wasn’t a place in private or public education for the nonverbal kids in the middle of the spectrum, who had occasional struggles with mobility and a crappy immune system. There wasn’t a place for the intellectually advanced child who was incontinent, tube fed, and immunosuppressed. So I took the advice our doctors had given, and our adventure of homeschooling began! We also took this time to be fully dedicated to therapy. We spend 8 to 10 hours each week in outpatient therapy for our boys. We’ve been doing this for 4 years now, and let me tell you, it has been life-changing for them.

Financially, it should be no surprise the cost of medical care for the medically complex isn’t cheap. Thankfully, we did find out about a program our state offered to help with the medical bills of sick children. My only regret is not hearing about it sooner, but at least we have it now. I often get asked how I’m able to stay home and homeschool our kids. One word: minimalism. Maybe three words, because debt freedom is part of it, too. My husband finished school in 2018. The company he had spent 12 years with had decided to no longer offer him tuition reimbursement. They also did not promote him as promised, even after they asked him to change his major–another story for another time.

Courtesy of Celeste Hensley

We knew the financial strain of student loans, on top of the burden of the credit cards we maxed out paying for medical costs and medication for our children, was going to be too much. We decided to sell everything. We sold our home, purchased a camper, and moved it onto my sister’s property. She and her husband own seven acres out in the country. It’s beautiful. We traded in our vehicle so we could avoid a car payment. We liquidated as many assets as possible. Since January of 2019, we have been living minimally in a tiny home. Yes, there are six of us, and it’s a tiny space (about 350 square ft), but we LOVE it! We downsized so much, my husband was able to quit his job and take a part-time job with benefits. He had worked long hours for our entire marriage, and we were ready for a break. I was alone for every surgery, each hospitalization, and all the appointments and labs. It’s been so great having Adam home more often! He will eventually go back to work full time again, most likely this year, but for now, we’ll soak up all the extra time we have with him.

Courtesy of Celeste Hensley

It’s crazy how the world of special needs changes your view on what’s important. Family is number one. Here we are now, in 2020. Life has finally started to settle down. Treatments are working and for the most part and their health is stable. Jax is not only talking, but he’s reading now! He takes his weekly injections like a pro and both boys like to assist the lab techs for their blood draws. Homeschooling is going well, and after 4 years, I feel like I’m finally getting the hang of it. Social studies and math are their favorite subjects. Our family is enjoying the extra time together. We spend our days playing outside, visiting local parks, watching Dude Perfect on YouTube, and visiting grandparents in Florida.

If I could give a new special needs mom any advice, it would be this: Be persistent! Always ask questions. Never stop fighting for your child. After all, YOU are their biggest advocate. Secondly, find a village. I don’t care if you must build it yourself. It can be made of doctors, nurses, family, friends, social media groups, or neighbors. As a special needs parent, you won’t fit into just one group, so build your own village. Lastly, don’t ever give up. While you may feel like your child is never going to grasp a concept,  reach a developmental milestone, or experience a treatment that successfully treats their illness, keep trying. It’s okay to cry or be angry about the ‘could have beens,’ but after you work through those feelings, make sure you take time out to rest and regroup. Your child needs you! No matter how dark your time is now, know that it’s only temporary. The life of a special needs caretaker is a roller coaster. Be encouraged and cling to the highs, because that’s what will get you through the lows. Celebrate each victory, no matter how small, and please don’t ever compare your child to others. That’s a sure way to get discouraged.

For the rest of the world, know that we are doing the best we can! We’re sorry that we had to cancel again because our kid was sick. Please keep inviting us! We’re sorry our kid is having the mother of all meltdowns in public. Trust me, we don’t like it either. Teach your children it’s okay to be friends with the kid that’s different. Be supportive. Let those parents know you’ve got their backs. We need you.”

Courtesy of Celeste Hensley

This story was submitted to Love What Matters by Celeste Hensley of South Carolina  You can her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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