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.
8 comments:
Brayden goes to school all day on week days, yes? By bus? That takes up a good 40 hours a week, yes?
Plus 40 hours a week of nursing?
Plus, what, 6-8 hours of attemdant??
There are only 168 hours in week. Brayden is presumably asleep for 49 of them, yes?
So you spend ZERO time with the kid. You've successfully outsourced almost ALL of Brayden's care?!?
What's the point of having a son that you spend ZERO time with??
How can you call yourself Brayden's mommy?!????
Wow Kiki..I'm so blown away by your comment, I don't even have any words. You are one nasty piece of work aren't you.
Mrs Jenkins, please don't take any notice of this stupid troll. They know nothing and are just seeking make trouble. Keep doing what you're doing - you are a fabulous mum and are an inspiration to me. Bless you xx
I have been a lurker to this blog but Kiki's comment really got to me. How unfair to judge someone else's choices on what is best for their family. It is very clear from every one of your blog posts how important ALL of your boys are to you. You are a fantastic mommy.
i'm not a mommy to a special needs child, but i do have a class of preschoolers who are much like brayden. good for you (and brayden) for getting some help! how wonderful that it's someone who knows brayden so well! i'm sure with the extra help, you'll feel revived (as i have seen with other parents) and your kids will benefit.
pay no attention to those who judge. clearly, they do not know the path a parent walks when thy have a child with such special needs. honestly, i feel bad for her. she's obviously never had the opportunity to have met a child like brayden. if he's anything like the superstars in my class, i bet he teaches a million lessons himself!
Dear mrs. Jenkins,
How wonderful that you got this attendant so you can actually go to the other boys'games and practices without Brayden getting all upset because it is his bedtime! I am so happy for you!
And please dont pay any attention to Kiki, who clearly has no idea what she is talking about! don't feel the need to defend or justify yourself as you are doing a great job and know very well how to balance the needs of all your boys! As we ourselves live with our special needs child Simeon, much the same diagnosis as Brayden, we also get judged a lot. But people really don't understand how hard it is to take care of those special kids and having other kids as well.
So please just continue to do your wonderful work as a great mom, which you are and continue to make the choices that you see best for all your family, which you are doing! I take my hat off for you, coping with Brayden and your other 2 boys and that with your husband gone so much. I know I wouldn't cope! Many blessings to you!
God bless,
Dorien Langstraat
the Netherlands
I am a pediatric home health nurse and I am furious about Kiki's comments. Clearly she has no idea what is involved in meeting the needs of a child needing complex medical help. Mom, you don't have explain a thing to this woman. How RUDE!
I am a Mom of a special needs child (he has ASD, and goes to a ton of therapy every week-ABA, ST, and OT) but has nowhere near the complex range of issues Brayden and your family have to contend with. I am appalled at Kiki, as were the other commenters. You are clearly a stellar Mom and love Brayden dearly.I can tell that you move mountains for him and want to give him nothing but the best and enjoy life to the fullest. You deserve (and need, I'm sure) all the help that you get. Don't let anyone get you down!!
OMG!!!!! I am so distraught by Kiki's comment. Carrie is by far the most amazing mom and lady I know. She has so much on her plate, but does it all without ever complaining, always positive, and supportive of her friends. It is very sad that someone could be so judgmental. You have no idea how off base you are.
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