Wondering what the future holds for my special needs child

What does the future hold for my special needs son?

I know that I spend too much time thinking about the future. I just can’t help but wonder what the future holds for my special needs son.

When C has difficulty listening to directions, I wonder how things will go for him in school. Language and auditory processing is difficult for him with his sensory processing disorder. I wonder how he will handle the pace of a classroom. What extracurricular activities will he be involved in? Will he be able to keep up with directions? Will he process language and turn it into a motor plan quickly enough to participate in his favorite sports? I pray that he won’t be bullied for being slower with processing. The thought of it alone shatters my heart into a million pieces.

Will C be able to eat meals with his peers? I never realized how eating is such an integral part of our social lives. We get together for lunch or dinner, grill out at parties, and pass out cake to celebrate birthdays. If my son isn’t able to participate in any of that, what will his social life look like?

How long will he have his g-tube? I know that he will need to sustain himself orally for a year before we can remove the gtube button. Will he ever get it out? If so, will he end up with a large scar? Will he be embarrassed by his scar?

I end up in a flurry of stress as my mind jumps from one thought to the next. Meanwhile, there’s this sweet three-year-old boy running away from me for the eighteenth time as I tell him it’s time for his tube feeding. I try to hard to live in the present. Take each feeding, therapy session and battle one at a time. As soon as my mind wanders, I crumble; it is all so much sometimes.

When it comes to your special needs child, what do you worry about most? How do you stay in the present?

Comments

  1. One day at a time is all we can plan. Only God knows any of our futures. I know it’s hard to not think about what the future will hold but we can’t let ourselves go there. I’m including myself in that statement since I tend to do the same. He could make great strides in the next year and a half through all the wonderful programs and therapies you are providing him. As the saying goes, Let go and let God! He knows Cs future and we have to trust in Him to navigate his future. Love you all so much!

  2. I think I’ve commented on your Instagram before, but I had a g-tube just like your son growing up. I had it up through high school and sometimes it was rough growing up and feeling different than my friends, but right now you’re doing all you can to help him. Sometimes he’ll want someone to vent to as he grows up and you can be that person for him. Sometimes he might be embarrassed about his scar and you can tell him that scar is just a reminder of his strength. One of the best things for him will be finding things he excels at. That will give him confidence for other areas of his life. Doctors once told my parents that my physical activity would need to be limited, but I ended up taking up the sport of running because they didn’t really treat me different than anyone else. They monitored me closely and sometimes I would finish a track meet with the are around my tube being a little tender and sore, but eventually I was able to have surgery to close the hole back up and now all that’s left is a scar. I hope that your son will be able to get rid of his and you guys will be in my thoughts:) oh and one more thing..when I was little my mom gave one of my dolls “surgery” and put a g-tube in one of them and I was the happiest kid on earth when she gave me that. Maybe there is a stuffed animal or something you can sew a g-tube into. I think he might get a kick out of that:)

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