Having a baby with special needs is a challenge I was unprepared to face, as most of us in this situation seem to feel. Quickly on, I realized that parenting itself was a new level of difficulty that was unprecedented, but with a special needs child, everything is amplified. From the very beginning, more was required of me than I knew how to do. It has been a beautiful process learning to be the best parent I can be for my child, and I am sharing this information to inspire and instill hope in those of you facing a similar challenge.

The Biggest Challenges

By far, the biggest challenges I faced were learning to accommodate my baby and developing a plan to learn more about the specific needs she had. Going into it, I knew very little about my baby's disability. With something like autism, it can be confusing and stressful to try to educate yourself about all the nuances that come with a neurological disorder like this. You can put the power back in your hands by taking the time to thoroughly research the disability and equip yourself with the tools to persevere.

Another challenge I faced was the anxiety and hopelessness I felt at times. When my baby was crying and I was unsure how to soothe them, I felt like a failure. It can be easy to let yourself spiral into utter despair, especially when your baby seems so unhappy. Some days I would experience panic attacks that felt endless. It became a burden on others around me, and I felt guilty for being so emotional. Guilt as a parent is one aspect I did not realize was so prevalent. It can be easy to feel guilt for everything, even much needed self care time. Even taking time to shower felt like a selfish choice, and I began to resent other people that did not have to worry as I did. Resentment, guilt, despair, hopelessness, and anxiety are all feelings that are normal, and it helps to know this early on. I wish I had someone to share their experience with me as soon as I gave birth to help me prepare for the emotional turmoil I was going to face.

Babies are incredibly resilient, and it is our job as parents to provide them with the very best to set them up for success. For parents of babies with different types of disabilities, such as birth defects or down syndrome, the information out there can vary drastically. Especially for autism, information can be limited. Medical professionals are still unsure of the cause, and there is no cure. It is similar for babies with congenital disabilities, as these are unchangeable without dangerous and expensive surgeries. One of the key aspects of persevering through these tough times as a parent is making the best of what we are handed.

What I Have Learned

I have learned to be gentle with myself and know that I am doing my best. The most important task as a parent is to focus on what is in our control, not what isn’t. Some of the most influential things I exerted control over were the nutrition and care of my baby. Investing in a high-quality formula, sensitive baby wipes, and other baby essentials helped me feel that I was giving my baby the best care possible. Especially for those with sensory issues, making sure the disposable diapers I purchased were made with good ingredients is key. Itchy, cheaply made diapers can cause irritation and agitate babies with autism and other similar disabilities. Another great option to consider is investing in cotton diapers. Cotton is incredibly soft on the baby’s skin while also being durable.

Another huge benefit is that it is sustainable, so you can feel good doing your part for your baby and for the planet. It can make life so much easier for stay-at-home moms of disabled babies. Running to the store to buy disposable diapers can take time, energy, and money. Cotton diapers can simply be thrown in the washing machine and re-used repeatedly. Or, order the disposable diapers through an online storefront and have them arrive at your door for the ultimate time-saving convenience. Every last bit of energy and time saved is time that can be spent with your baby.

Another lesson I learned is to lean on others. Joining a parenting group, either in person or online, depending on your circumstances, is a great way to remind yourself that you and your baby are not alone. Parents with special needs babies have a wide variety of struggles and being able to vent, support, and even cry to each other is immensely helpful. You can share your tips and what works for you while hearing advice from the other parents. Along the way of learning these lessons, my spirit was re-fueled with positivity, hope, and excitement for the future. Although it felt impossible at times, the breakthrough was more than I ever could have dreamt.

The Takeaway

Everything seems hard at first, but once you get the hang of a routine, it all falls into place. Putting a plan into action, creating an intentional list of necessities, planning fun activities, and leaning on others are all incredible ways to succeed in this new style of parenting.

The best advice I can give to parents of disabled babies is to keep going and know that you are doing your very best. Following the advice above, you can rest assured that your baby is well taken care of with love, proper nutrition, and the highest quality products. Special needs babies are no different than any other baby; they simply require a different level of care. Knowing how to care for them in the best way is all that we can control. Remind yourself daily that your baby is loved and nothing else matters.

August 25, 2022 — Sarah Cole
Tags: true stories

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