Months before a baby is born, you plan everything! From room décor and furniture to which car seat to buy. Where you will give birth. Who your doctor will be.
As a new parent to a baby with a disability, it becomes even more overwhelming. If your child has a physical disability, they will need more and different equipment. Not only will there be more stuff, but it will most likely stay around for decades, not for just the first few years. And there’s no guidebook for what stuff to get or avoid.
So I know that space is a major issue for us. It was for me!
It would have helped me to know, in advance, what my daughter needed and what was just extra. Necessities must come first. Having a safety enclosed bed and a safe place for her to shower for years to come was priority. Not only are these items large, they might make or break a place to live!
Her car seat was another biggie for us as we had a vehicle we could use to transport her. The car seat was large but could stay in our car and not take up seating space. Some might use public transportation where the child stays in their wheelchair and it is strapped down in the vehicle.
Keep in mind that a wheelchair takes up a lot of space. It may start off small, but as a child grows, so do their wheelchairs. The wheelchair needs a lot of room to move around a house. So open space is necessary for the chair to move with ease.
There are many more pieces of equipment, but not all are needed. Most take up a lot of space. So try to only get what you think they need and will use. Our daughter had a stander she used every day. She had an adaptive bike. She hated it and it just took up space. She had a walker that was used some but not much. Her shower chair and bedside commode were used a lot and I considered them both a necessity.
Equipment and supplies are costly. Looking back, I wish someone had told me what not to waste money on. Some items we were able to borrow and try before we bought.
There are groups that offer used equipment at low or no cost. You can find them on Facebook and by searching online. You can put items you no longer use on there too!
Also, make sure to connect with other parents. They can offer so much help and information and help be a guide to equipment.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.