Do you have trouble finding a sitter for your kids? Yes (like most parents)? Now imagine trying to find help for Brayden.
We have had nursing hours for Brayden for a few years now. We have a nurse for 40 hours a week. Brayden qualifies for more but it is hard to find a nurse for those off hours (evenings and weekends). Brayden's current nurse has been flexible and trying to shift her hours to help when we needed the most help.
Jeremy is traveling so much these days. In the month of January, he is gone more days than he is home. The business has had amazing growth but that means Jeremy is on the road to those offices. I am running Carter and Luke (with Brayden tagging along, much to his dismay) to their many activities. Those late night basketball and wrestling practices do not go over well with Brayden. Especially since he has been at school all day and is going the next day as well.
There has been some meltdowns during those evening practices (and I have been on the verge with Brayden), sometimes bad enough that I had pulled the boys from their practice early because Brayden couldn't take it anymore...he couldn't take the noise, being tired, too much stimulation for that time of day when all he wants is be in his bed...and I couldn't listen to any more of the random, well meaning, strangers coming up to him (getting too close) saying "Oh, somebody upset and tired!" or "Someone wants to go to bed!" and others that have no problem touching him, which he is not a fan of strangers touching him, but really who is?!
After one too many rough nights, we found some extra help. Brayden now has an attendant. The attendant can help with Brayden but not any of his medical stuff, so we adjust so that the nurse or I can do that stuff. We have the attendant for a couple of evenings during the week as well as Saturday. And the bonus of having this attendant...she is from Brayden's school. She knows Brayden; knows his fakes cries, his little quirks and preferences. She was an assistant in his class last year and the previous year. She also has worked with other families as an attendant.
We are two weeks in and we are already seeing the benefits. Brayden is not stressed. Mommy is not nearly as stressed. Carter and Luke are not stressed to hear Brayden screaming during their practices/games, worrying that mom would pull them early just to get Brayden home. Jeremy is not stressed listening to me rant and vent about how I stressed I was getting Brayden in and out of practices, then trying to keep him comfortable and content till we can get him home.
Brayden is home, on those busy nights, resting peacefully is his bed (or having a little dance party). And his first Saturday at home in a long time (rather than at his brothers' game), he was happy and had fun. So much fun that he was deep asleep after the attendant left.
*Clarification due to a comment. First off, how nice to have someone be so judging, especially when they do not know, nor do they understand. We do have a nurse, she can work 40 hours but she really works 30-35 hrs recently and the vast majority of her time is spent with Brayden AT school. So we have her about 4 days a weeks and they are not full days. Brayden does go to school M-F and I would like to say that he goes every day...but he does not for a variety of reasons. The new attendant is here so Brayden can stay home and sleep on the weeknights (only 2 nights). A lot of the boys practices start around 7:00 p.m. and Brayden's bedtime is 7:00. And the attendant is with him so far 1 Saturday, and will do more Saturdays, so that we can go to Carter and Luke's games. I have missed ALOT of games because Brayden does not handle the crowd noises, ref whistles, buzzers, etc. Brayden and I have stayed home and missed many events because it was best for Brayden to stay home. Now having an attendant, I have the option of actually going and Brayden can stay home, which is best for him.
Just because we have a nurse or attendant with us does not mean that I am not with him. Trust me, I am with him. And with him for a lot of quality time. More time than I even have with Carter and Luke because of their school time and sports.
Please don't judge, you have no idea. I love all of my boys dearly and part of being a parent is finding the balance. I would love to have Brayden with me at every moment (and I have pushed him to far, too many times when trying to include him in everything) but sometimes it is best for him to be at home, with some help.