I have a son with extraordinary needs, special needs.

I know that this term is not something every parent uses and many have strong feelings about not referring to their child with “special needs.”

I can understand and respect this view, but I will still use the term special needs when it comes to my son and I’ll tell you why.

According to Merriam Webster, one definition of special is: being other than the usual: additional, extra.

First and foremost, our son is a child. He is a sweet 4 year old little boy who loves books and snuggles. He has a heartwarming smile and a giggle that can make anyone’s lips turn up at the corners.

He throws fits when he doesn’t get his way and can be very jealous of his new baby brother. He loves Daniel Tiger and one of his favorite things to do is shake his head “NO.”

But his needs are extra.

His needs are additional in comparison to his siblings and many other children we are in contact with. His needs exceed the needs of his 4 year old peers.

To be honest, almost everything about him is “other than the usual.” He needs medication administered daily; medication that is vital to his health.

He is tube fed nearly 24 hours a day with a GJ tube, needs his blood sugar monitored, and has his G port vented all night long.

He has vision loss and moderate to severe hearing loss; with these two combined he qualifies for deaf/blind services in school. He attends occupational, physical, and speech therapy several times a week.

He cannot walk so we have to carry him and transfer him all day long. He is starting to sit for longer periods of time but he struggles with balance so he needs to be supervised at all times.

He is nonverbal and has yet to say his first word, but uses a communication device to make requests, say “hi,” and communicate many other wants and needs.

Along with the daily things we do for our son he also sees multiple specialists to monitor his condition.

I am sure I could go on and on regarding the seemingly small things that we do on a daily or weekly basis that are much more due to his disorder.

Dressing, teeth brushing, toileting, bathing, the list goes on and on. And when he’s sick the list is even longer.

Everything is additional. He has special needs. Extraordinary needs.

There is no getting around the fact that our son is not like his peers.

There is no hiding the fact that what we do on a daily basis doesn’t come close to what most parents do for a typical child his age.

And using person first language, I will say our son has special needs. He is not my special needs son...he is my son with special needs.

His needs are extra. Additional. And most definitely other than the usual.

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