In Nikki's Blog

I had started to make a Facebook Post of an update on the boys. But like usual it got too long, what else is new? I’ve never been good at keeping anything short and sweet. But as I was writing this it made me think about so many different things that have been on my mind. The thoughts just kept overflowing and I thought that I better make a Blog Post. Today has been the laziest day that I have had in months. I honestly don’t know the last time I sat around in my pajamas and binge watched Live PD like I have today. I’ve been kinda lifeless and I felt like I was getting sick yesterday, slept great last night and woke up still feeling the same way. It could very well be that this week literally about drained every ounce of my being. Mentally, emotionally and physically I was just spent. I’d like to think I’m getting used to stress and feel like I have gotten really good about taking a step back and not letting it consume me. It’s something I have worked so hard to manage because so many things happen in our day that are intended knock me flat on my rear end. Phone call after phone call that comes in with more demands, more questions, more information to be submitted and sometimes I just feel like I have nothing more to give. I can’t offer one more piece of information to another insurance lady, doctor bill, denial, medicaid demands, SSI demanding every single thing related to our life and then asking for it all again in a different way, and then a third time and it’s just frustrating that they continue that cycle. They already have everything they need, why do they keep asking for the same information over and over. I truly feel like it’s a deterrent to make people just give up. And I can see why they would because it’s just almost too much sometimes. This week was one of those weeks where I had multiple days of pure stress that just was out of my control. It just kept rolling in like a tidal wave and I kept trying to keep it together and I just couldn’t. This week, the stress won. I hate to admit it but it got the best of me. Hey, you win some and you lose some.

Peyton has been plateauing on some of his goals, which we knew could happen. He’s still making progress in so many areas but through our therapy, they keep track of data to monitor progress, which is awesome because data doesn’t lie. With that being said, you have to look at the big picture and remember the amount of progress overall that he has made.  He struggles with motor imitation, pointing, sitting at the table or on the ground for an activity. He just has an extremely hard time sitting still in general. Listen, I’m not one of those people that point out every single thing my child does or doesn’t do and make sure everyone knows it’s Autism related. I do share the Autism side of things more often than others purely just to share and educate others. But make no mistake I truly believe that sometimes a kid is just being that, a kid. They have bad days and good days just like we do. But sometimes in our situation, knowing the underlying cause can definitely make it easier to understand the function of the behavior or in Peyton’s case sometimes lack thereof. With that being said, Peyton was scheduled to start discreet trials this week. Discreet trials is a different style of ABA that we had not used. We were doing a play based therapy that is fairly new called the Early Start Denver Model and Peyton had so much success with this and he still is! But again, we just weren’t seeing certain areas improve as we would have liked, so it was time to try something different with more repetition. We knew the change of routine would be hard on Peyton and I was prepared as much as I could be, but you still just aren’t ever truly ready to watch your child upset or uncomfortable. Peyton hated it, to say the least but as the week went on, he began tolerate it. And the thing that I love most about ABA is that the therapists don’t give up. If it’s evident P is having a really hard time, they allow him time to settle down, redirect, chase him and do something that he enjoys to get him back on track. And usually it’s in those time that the most growth is made. It’s those times that the most growth can be made and Peyton has some really amazing success!

Motor Imitation is something that usually comes so naturally to typically developing children. You clap and try to get your child to clap back. Eventually they pick up on it and it’s the cutest thing ever. It comes so naturally in fact that most people don’t realize how easily these things are taken for granted. When you have a child delayed in any area, you experience a journey that teaches you some of life’s most valuable lessons. Your entire outlook changes and there’s no way you could ever be the person you were before. All three of my children have experienced a different path and the delays they have experienced are very different. Peyton has had a harder road in almost all areas which is a sad but realistic reality. His health journey has been different and now his journey with Autism is different as well. And the one thing that is hardest to accept about it all is that Peyton has never had anything come natural to him. He has had to learn how to do some of the most simple things that were so, so hard for him. And watching that and knowing that doesn’t get easier.

Peyton doesn’t talk, just hums and makes the cutest little sounds that you have ever heard. I have a lot of people who have asked me if we know when he’ll talk. I have asked people who work with him, speech therapists, OT’s and his ABA therapists numerous times and after asking them, I know it’s not a fair question. The truth is we just don’t know, no one truly knows. I’ll be completely honest that this entire talking subject used to scare me terribly. But in the past couple of weeks, I have truly let go of those fears because worrying does nothing but create more fear, anxiety and stress that is unneeded.  I can’t ever make Peyton talk or control when and if it does happen, but I can keep pushing Peyton through his 20 hour therapy schedule. I can do that and continue to exhaust all resources to make sure that he has the best chance to get there. And I also need to recognize when he’s had enough and when he needs a break and that it doesn’t make me a failure as a mom when I have to cancel therapy because of that reason. That is hard for me, I don’t want to cancel because I feel like we are missing out on an opportunity for Peyton to have a breakthrough that we have been waiting for.  I feel like I am failing when in fact it’s crystal clear that this boy needs an afternoon off. My point here is that if some day I have to accept that Peyton just isn’t going to be able to do something that we have worked so hard and so long for him to do, then it will be ok. Just like I will have to accept that if it is with Brody or Chase. I’m sure it will be hard, I’m not discounting that at all. I just know that I will be able to know in my heart that we did every single thing possible and we did the best that we knew how to do to try to make it happen. I have to know that even though we put in hours upon hours that it just wasn’t in the cards for him. It doesn’t mean we failed by any means and it definitely doesn’t mean he failed or I failed as a mom. Because those were times that may not have resulted in that one particular goal we really, really wanted him to reach, but look at all the other goals he ended up reaching along the way. That is beautiful and precious and memories that will never be able to be taken away. And I have accepted that. I have accepted that it will be what it will be because as a family, we will get through this the same way we have with everything else that has come our way.

The biggest thing I have noticed that people say to me is, ” I don’t know how you do it.” And I never knew how to answer that statement or if I was even supposed to answer it. I know this comes from a good place and I am SO thankful that people give me feedback and say the kind things that they do. Those comments have fueled me through some rough patches. But I thought about this the other day when someone else told me that and I really thought long and hard about it. And here is the absolute best answer I can tell you, I just want people to know that those are my babies. Those are the three most precious gifts I have ever been given. God choose me to be their mother and Brett to be their father. He choose the best grandparents, aunts and uncles that they could have ever been given. They are the absolute best support system and are truly amazing with how they roll with everything. I believe now more than ever that God choose us for a reason, all of us, to bless us with these three boys. We often times didn’t understand why especially when it all was coming to light and we had to accept some hard realities. To us, and I’m talking about all the people I just listed, we are just doing what has to be done for them. Because it takes a village and I can’t tell you how ridiculously true that statement is. Every parent will do the best they can to make sure their kids get what they need and it’s no different for us.

Some days suck and then sometimes you have days that turn into a week that just sucks! Hey, it happens! The biggest thing I try to remind myself is to let a bad day be just that, a bad day. Just because you have a bad day or a bad week does not in anyway shape or form mean you have a bad life. But don’t discount your feelings, don’t ignore the pain you are going through or the experience that made you get there. That is no good either because then it just keeps building up and building up and usually comes out in an ugly way. Know that your feelings are valid and that you have a right to feel the way you do. One of my favorite sayings is, “Saying someone shouldn’t be sad because there are people out there who have it worse is just like saying someone can’t be happy because someone out there may have it better.” Feel it and own it. But don’t let yourself stay there.  The best part of going to bed is that you have a chance to wake up the next morning and make it a better day. And if you can’t control what’s happening around you, challenge yourself to control the way you respond to it.

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