Adapting To The Adaptive Life can be a slow process, but now that we are many years into the journey, I can share what I have learned with parents who are just beginning their medical/special needs life. 2006 is the year our oldest daughter was born with profound disabilities.
She never learned to sit up, crawl, talk, or walk, so finding the right equipment to keep her comfortable was a challenge at first. Special medical needs make comfortable clothing and positioning difficult without the proper supplies.
(This article was first published in April 2021. Our daughter, Abigail, passed away in July 2021. Our son, Jubal, is still alive as of 2024.)
All of the Things – Planner & Record Keeper for An Extra Special Family
Adapting To The Adaptive Life With The Proper Equipment
Adapting To The Adaptive Life includes finding the right medical equipment and sitters for our children. We have found the Special Tomato chair is the best option for our oldest daughter and have gotten two of them over the last decade from Adaptive Mall.
Adaptive Mall has a fundraising option called Kiddie Pool that allows people to donate funds that will go directly toward purchasing needed chairs, strollers, beds, etc. We were blessed to get funds for a Special Tomato sitter and a bathbed for our oldest daughter after she outgrew her previous stuff! (I am in no way affiliated with Adaptive Mall.)
Our youngest son has been set up with an adaptive wheelchair/stroller that has worked awesome. It was funded through our local hospital and was custom-made for him.
For sleeping, we used the Nap Nanny (discontinued) for our daughter’s first few years, and that worked well until she outgrew it. We got a Comfy-Lift (now Comfy-Adjust) Bed through our insurance, and it has been a huge blessing for the last several years. (I am in no way affiliated with Comfy-Lift Bed)
We use soft bumper rails under the sheet for our son on a regular twin bed, and he has done well with that. His disability isn’t as profound as his sister’s, and he can sleep in a flat position if he wants to.
We are so thankful for the many options for equipment to make Adapting To The Adaptive Life a lot easier than it used to be!
Learning To Adapt With The Proper Clothes
I have adjusted my children’s clothes, positions, chairs, car seats, and beds to accommodate their feeding tubes and disabilities. One of the best things I have done with my youngest is to buy adaptive clothes made for feeding tubes.
I have found that SpecialKidsCompany on Amazon sells the best adaptive clothes with feeding tube access, especially for older/bigger children. I have tried a few other brands from Amazon, but they were poor quality or oddly shaped.
There are short-sleeve or sleeveless styles available. We prefer short-sleeved T-shirts; they are all my son wears now that he is older.
The shirts have snaps between the legs to keep the shirts from riding up and make diaper changing easier. The shirts from SpecialKidsCompany are one layer, nice and lightweight, so that they do not overheat.
The one-piece onesies are perfect for bedtime and make giving meds quick & easy, even without waking my child! Most importantly, for all of the adaptive clothing, they have extended sizing so that disabled adults are comfortable, too.
I am thankful that brands are considerate of children with disabilities and want to provide a great resource for families with feeding tubes. Knowing about clothing that made life with a gtube easier would have been helpful several years ago! I hope these resources help you!
DIAPERS
Once my disabled children outgrew children’s diapers, we switched to Tranquility Slimline Original Adult diapers. They start with size x-small, so the transition is seamless. The quality is better than any other adult diapers we have tried. These are soft, cloth-like materials with velcro-like closing tabs. A lot more comfortable than the plastic, sticky, hot styles with tape-like tabs! SHOP THE BEST DIAPERS FOR SPECIAL NEEDS CHILDREN HERE.
Special Needs Resources
Neck Support Pillows Machine Washable(Pink)
Memory Foam Neck Pillow – Navy Blue
Bandana Drool Bibs – Unisex –
Hearing Protectors – Adjustable Headband Ear Defenders For Children and Adults (Green)
Foam Bed Rails Guard Bumpers with Machine Washable Cover
Hypnoser Weighted Blanket for Kids, Pets (5 lbs, 36
Uplifting Resources For Special Needs Families
Music is uplifting. Songs of Love Foundation creates custom songs with music for your child with medical/special needs for free!
We contacted them for our oldest daughter back in 2009, and we still listen to the song they sent us. It was played on repeat every night for many years to help our daughter sleep.
They are a fun and encouraging resource that you may want to check out.
If you are in the early days of your feeding tube journey or learning to care for your child with disabilities, be encouraged! You will learn, adapt, and grow through this, and come out stronger, more compassionate, and you will be okay.
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