One of the things associated with cerebral palsy is challenges with eating. 🥄🥣🥤

My son sometimes has a difficulty chewing/biting off pieces. Bread can get gummy…and sticks to the roof of his mouth. His tongue sometimes has a hard time dislodging it.

We were SO fortunate to receive this meal from our local school! ❤️❤️❤️❤️

I toasted the bread(breaks down easily)and cut the meat/cheese into bite-size pieces and put it back into the bun.

We used a spoon to feed him Craisins so that we’re not sticking our fingers in his mouth(gross for both!).

Merlin uses a straw to drink. We use covered containers since sometimes his arms will swing(accidentally?)and smack his drink LOL.

It’s all about adapting/modifying so that Merlin can enjoy life just like his peers.

Merlin is asleep at the other end of the house. I check a text and see that the special educator has asked if I would like to continue to put my son in the typical classroom scene next year(with peers or more special ed).

I’m already feeling exhausted/defeated from reading the blurb.

I relay it to my eldest son Lincoln(15y) in hushed tones and throw in “let’s get real, what job do you think Merlin can really have? I mean, really. With arms and legs that don’t function properly and he can’t speak*. Does he even need an education**? That’s what I wonder about.”

In his typical swagger he quickly responds “Medical technology is rapidly advancing.“

I’m not detoured from my frustration and I make some fresh comments about “not holding my breath” etc.

I go to fold laundry and he burst in saying he has the perfect job for Merlin: “a smuggler! No one would suspect him!”

We both laugh. It’s a ridiculous suggestion but I know he was simply trying to insert comedy into a depressing reality.

He goes on to explain that he thinks Merlin can say more than he is letting on and that communication is more than words…. that words are simply sounds organized in a pattern…etc. In fact he performed a 5 minute “lecture”about it.

By this time I have moved on with a little more hope and with a little less isolation knowing that Merlins older brother understands the situation. Link is looking out for him and not lowering his expectations; I need to do the same. ❤️❤️❤️

*Merlin can say a handful of words. He is technically “non-verbal” but he can say about 20 words such as yes, no, hi, mom, dada, milk etc

**Merlin has the same thoughts, feelings, and understanding as his peers. He can learn what they learn but because he is non-verbal(and a people pleaser)testing him is a challenge.

The hospital registration called. Merlin has a dental appointment for his first teeth cleaning(and likely cavity fillings). Merlin in 13 years old.

He cannot keep his mouth open for a cleaning. He has a strong jaw like a crocodile… it will snap shut if hands come near. 😀

There were many health questions to be answered. He will require anesthesia and they need to know what to expect.

About 20 minutes into the conversation I started getting frustrated. I was so annoyed that I needed to do this at all. My Neuro-typical children don’t need to be “put under” to get a routine cleaning.

I reminded myself that this woman on the phone was doing her job and being grumpy helps no one.

We discussed medical conditions, past surgeries, medications, his seizure symptoms, his (limited) communication/mobility…all the ugliest parts of being Merlins mom…..for 70 mins. She listened attentively and had steadfast kindness. She even laughed at some of my awful jokes. 🙂

This woman has an epileptic child as well and I was comforted that she understood that facet of my life.

A call that could have unraveled me….improved my day! I felt heard. Not pitied. Sometimes that’s all you need. ❤️❤️❤️