Navigating the Special Needs Journey: A Mother's Perspective on G-Tubes, Autism, and Finding Joy - Katiesull Sullivan

Insights and Advice from a Mom in the Trenches

October 15, 2023

As special needs parents, we often find ourselves thrust into a world we never expected - one filled with medical jargon, therapy appointments, and daily challenges that can feel overwhelming. But within this journey, we also discover incredible strength, moments of pure joy, and a community of fellow parents who truly understand.

Today, I'm thrilled to share an inspiring conversation I had with Katie, a single mom to 6-year-old Emmy. Katie opened up about her experiences with Emmy's G-tube, autism diagnosis, and the rollercoaster of emotions that comes with raising a child with complex medical needs. Her story is one of perseverance, hope, and finding beauty in unexpected places.

1. The Early Days: When Medical Challenges Arise

Katie's journey as a special needs mom began when Emmy was just 13 months old. Up until that point, Emmy had some minor delays but nothing too concerning. However, things quickly changed:

"At 13 months, Emmy started having what looked like seizures. She'd get dizzy and fall. As she was taking her first steps, she had one of these episodes and fell on her nose. After that, she refused to walk and went back to crawling on her knees."

This marked the beginning of a series of medical investigations and challenges. Emmy was eventually diagnosed with a rare genetic mutation called BPTF, which impacts her in several ways:

• Seizures
• GI issues requiring a G-tube
• Developmental delays
• Learning disabilities
• Autism spectrum disorder

For Katie, like many of us, the early days were a whirlwind of doctor's appointments, tests, and trying to make sense of her daughter's changing needs. She shared:

"Everything was literally delayed - her rolling over, sitting up, crawling, walking. We didn't know about the low muscle tone until we started therapy around age one."

The G-Tube Journey

One of the biggest changes for Emmy and Katie was the introduction of a G-tube (gastrostomy tube) when Emmy was two and a half years old. Katie admits it was a stressful transition, especially as it coincided with pandemic lockdowns:

"When she first got her G-tube, it was kind of lonely. It was during the shutdown, we were trying to be really careful. I literally wore two masks to work, you know, and all that stuff."

However, Katie soon saw the benefits:

"Getting the G-tube was like the best thing we could have ever done. Her speech took off and all that stuff."

2. Autism and Everyday Life

As Emmy grew, it became clear that she was on the autism spectrum. Katie described some of the ways autism impacts their daily life:

• Emmy thrives on routine and can get upset if things change
• She has some rigid interests, like only wanting to watch certain movies on repeat
• Social interactions can be challenging, though Emmy is very friendly
• Sensory sensitivities impact things like eating and tolerating certain environments

Katie emphasized the importance of understanding that autism presents differently in girls compared to boys. For Emmy, it's not always obvious at first glance:

"She doesn't always look you in the eyes, but she's very like 'Hi, how are you?' and she'll be all up in your space. She doesn't know any boundaries."

Finding the Right Support

One of the biggest game-changers for Katie and Emmy was finding the right school environment. Emmy now attends a private school specifically for children with IEPs (Individualized Education Programs). Katie raved about the difference it's made:

"There's like 12 kids per class with two special needs teachers per class. It's so nice because like at the end of the year picnic, all the kids run around and there's no 'Oh my gosh, she's doing that!' looks or pointing. Everybody takes everybody for who they are."

This acceptance has been crucial for both Emmy and Katie, allowing them to feel understood and supported.

3. The Feeding Journey: Challenges and Triumphs

One of the ongoing challenges for Emmy has been around eating and feeding. While she no longer relies on her G-tube for nutrition, she still faces difficulties with chewing and trying new foods. Katie explained:

"She could swallow, there's nothing wrong with her swallow, there's nothing wrong with chewing. But when they misdiagnosed her with a concussion instead of seizures, she was throwing up a lot. That wasn't helping, and then her acid reflux - we weren't on meds yet."

These early negative experiences created lasting hesitation around eating. However, Katie remains optimistic:

"Right now, she just has some hesitance. She'll drink blended foods, have yogurt and pudding. We're slowly working on introducing more solid foods."

Katie's advice for other parents dealing with feeding challenges:

• Be patient and celebrate small victories
• Work closely with feeding therapists, but don't be afraid to switch if it's not a good fit
• Consider blended diets as an option (with medical supervision)
• Remember that progress may be slow, but every step forward is meaningful

4. Building Your Village: Support and Self-Care

Throughout our conversation, it became clear how crucial support systems are for special needs parents. Katie is fortunate to live with her mom and sister, who help care for Emmy. She also emphasized the importance of finding your "people" who truly get it:

"It's really special to find people where you feel like you connect. If you say something like 'We had a problem with the food all night long' or 'I haven't slept in forever,' they get it."

Katie also shared some hard-earned wisdom about taking care of yourself as a caregiver:

"Mamas out there, it is okay to get help and take medicine. I'm not saying push it and do it and that's all you should do, but that's what I'm doing and it's helped so much. I'm gonna be honest, I wish I would have done it a lot sooner because I think I would have been happier and had more happy memories."

Some other self-care tips Katie suggested:

• Find small ways to feel like "you" again, even if it's just doing your hair or nails
• Connect with other special needs parents, whether online or in-person
• Don't be afraid to switch doctors or therapists if it's not a good fit
• Celebrate your child's unique journey and try not to compare to others

The Road Ahead: Hope and Perseverance

As our conversation drew to a close, I asked Katie what advice she would give to her past self or to other parents just starting this journey. Her response was beautiful:

"It's gonna be okay. You're gonna get through it. You're gonna be a strong person... I would just say to myself, 'You'll figure it out. You're a strong person.'"

She added: "Any moms out there - you're gonna do it. You're gonna be strong and you're gonna get through it."

Katie's story is a powerful reminder that while the special needs journey is rarely easy, it is filled with moments of incredible love, growth, and unexpected joys. Emmy has taught her mother patience, resilience, and how to find beauty in the little things.

To all the special needs parents reading this - you are seen, you are appreciated, and you are doing an amazing job. Remember to be kind to yourself, reach out for support when you need it, and celebrate every victory, no matter how small.

If you're looking to connect with other special needs parents, consider joining our supportive Facebook community or attending one of our virtual coffee chats. Together, we can navigate this journey with more strength, understanding, and hope.