Wednesday, October 28, 2015

this is so hard

This journey is so up and down, but if there was a trajectory towards up, man, this would be easier.  Logi is moving up now.  He can use a cup, a spoon, and is imitating his peers.  He is very social.  He IS SO FAR BEHIND on Language-- so so so far, much further than Landon at this age, but yet, there is progress, so there is not as much worry.  Weird right?  He does not point, but he tries anything and isn't so afraid.  

Landon is so frustrated.  Being hit is becoming a constant thing.  We have the IPAD, signs, pecs, everything, but it doesn't say what he wants to say, and he is hitting.  He goes to time out and sobs.  It is a sick cycle.  I had to stay home from work today because I had a migraine because I cried watching him in school yesterday, cried in a meeting with his support teacher, etc.  She said- he is making progress.... to me, it is not enough.  It is so not enough.  I am going into high strung mode now, but i don't know what to do.  It feels like he is slipping through my fingers and I can't help him.  He is there all day now, and you pray school is the best, right?  It's scary.

It has been a stressful week.

Sunday, October 18, 2015

When there is really nothing left to say

Sometimes it is hard to write here.  Months go by without any huge progress, yet something here has changed.  If I could do anything right now besides be an SLP, I would be a grief counselor.  I am fascinated by the process- I feel I have a lot to offer, and I really benefited from that kind of support when my mom died.  So my progress is acceptance.  I have realized I have accepted I have two kids "with needs."  That does not mean there are not days of denial, or cringing thinking about a vaccine, or getting a pedicure when pregnant, or something like that- it does happen.  I have to just block it out, think of another person who did that and their child did not need services, and then I move on.  Denial, is not so much anymore.  I am aware of their needs, but most of the time, I see them as pretty typical little boys.  They fight, they hug, they love me, they love each other, and they love to be outside.  They are just little boys afterall.  I did the bargaining too, and I still have most people with kids hidden on fb, and I realize that is ok.  Sometimes the bragging is just too much for me.  I don't need to explain that to anyone.  So where is the acceptance?  The acceptance is knowing they both have apraxia.  Logan has hearing loss also, and Landon has sensory processing disorder.  Otherwise, the disorders are similar.   They both want to learn and want to be right with the other kids.  I think this disorder was in place when they were just little cells, little cells I loved so so much.  I am aware that progress is slow, but I am also aware that there is nothing else we can do, nothing.  So what is left?  for me- to enjoy them, to laugh with them, love them, and remember that one day, everything will be just as God planned it.  That has helped me a lot.  So it still hurts, I still cry anytime I talk about them and their struggles.  It still feels so unfair and difficult; however, I do know that no one else could do this as well as me.  And that feels good, like I am giving the boys the best shot at everything possible, and that God picked them for me.  There is really nothing better than knowing that life is going just as it was supposed to... not by my choice, but by someone who really has my best interest in mind somehow and I have to trust that.  I will never, ever give up on the possibilities of my boys.  I have to accept that we have struggles, but I also have to accept that we take a deep breath, and enjoy the ride, tears, laughter, too much therapy, and all....  <3