Jilli is also getting older so there are things I am being more selective about sharing on here. She was watching a Brain Pop video recently about internet safety and she saw me uploaded photos for the blog and told me that I needed her permission to post photos of her and she is right, she is old enough to be able to say yes or no to blog pictures. There are many things in her life that she can not control but this is a way I need to be respectful to her.
One of the things we have been having a lot of conversations about with her team is areas that should be developing on their own even if I was failing in every way possible. Being a 4K teacher I have seen plenty of kids who came to school for the first time knowing next to nothing about letters, numbers, ect and then they are the kids that make the most growth that year because their beginning of the year testing is very very low but their end of the year testing looks right on par with their peers. These kids also come in knowing how to do some things just because kids develop just because they are human. Most kids learn how to jump, run, color, put clothes on ect without having formal lessons in how to do those things. There are ways to set up life to help those skills develop but for most children they just happen. This is also very true with pre writing skills.
Here is where we are having a hang up... Jilli is 6... she has been in PT since 15mo old... she has made some great gains over the years and works so hard in therapy and still we do not have some of those skills that should naturally self develop even with support in the development.
We are seeing that in speech as well. She has been in weekly speech again for over a year now and while she can make some of the sounds now in isolation we are not seeing it transfer into conversation like we would like it to be. We are also noticing the more she works on proper speech sounds the more she is having issues where she starts a sentence, gets stuck part way through and then sometimes can not remember the rest of the sentence or needs help finishing it. Recently we were driving and she started to cry... I asked her what was wrong and she said that saying "L" correctly just makes her mouth so tired... she wants to say it correctly that it is just too hard.
We are seeing this in fine motor too... honestly her name writing is her best writing and some days that can even be hard to read. Her hand gets so tired when writing so quickly... but those pre writing skills still are not there, she can not color in the lines, her drawings of people barely look like people, all of her shapes look the same... these are all skills that should just develop but they are not... even with a lot of help.
I dislike playdough... I don't like to touch it and I don't like the mess it makes yet we try to play with it often to work on hand strength. We own so many different toys and activities to help them grow and develop in these areas.
We recently had a doctor say that we need to push harder in these areas and it really frustrated me... first off because the doctor did not ask first what we are already doing in these areas... but also because if they understood development they would know that many of these skills that the kids are struggling with should self develop and if they are not, that means there is an issue... especially with supports in place. This isn't a matter of trying harder!
What is frustrating is that part of our team when I bring up these delays is that they look at me like "yeah and..." its not a disrespectful thing but more of a "what do you expect with kids that show muscle and connective tissue issues... this is just kinda part of it all and normal for kids with their overall symptoms" and then I have other members of the team who think we need to be pushing the kids harder in some unknown way because they think if the kids just worked harder and we pushed them more that things would change without recognizing how hard they already work.
There is also a "cost" to everything. Focusing on one skill means not focusing on others. This is somewhat true in typically developing children as well... you see bundles of skills develop at the same time where there is times where speech really develops and other areas slow for a few weeks and then they trade... but for typically developing kids this isn't a trade off but more that the body focus on one thing and then moves to the next thing... there tends to be an order that most things develop from most kids.
But ours is different... to focus on one thing means to have to set the others aside... there is only so much their bodies can work on at a time on top of their every day things or their bodies get too tired and can work on nothing. I feel like right now I am needing to remind our team of this because while I am all for pushing them and helping them learn and grow... we need to be smart about it and we need to focus on what is most needed...
And what is most important to the girls and our family.
The things this provider wanted to focus on are not the things that the girls are most frustrated about or the things that impact with daily living the most. Sure to the outside the probably are, but individualized care means looking at each family and asking what their goals are.
To work on some of the goals this provider brought up we would likely have to stop school and I am not willing to make that trade off... what kids learn before age 8 sets a foundation for the rest of their lives. It is key to development. Jillian has like 15 different jobs she wants when she is older and for those to be a possibility we need to help set a good educational foundation for her now which includes helping to develop her writing skills the best she can... if she is 30 and still is on oxygen but has no way to write/dictate/type the communication piece is going to hold her back a lot more in life then the oxygen usage. But often we get hung up on the obvious supports that sometimes we forget that the smaller things actually make a bigger life impact sometimes.
As a family we need to evaluate the "cost" of every medical test, treatment and therapy... while we as a family are willing to do a lot of things and arrange our lives in such a way to try our best for our girls... we as a family have to have some boundaries too... but that feels like boundaries in this area are viewed by the outside world as not trying hard enough or giving up which is not the case... we just have to choose which steps we see as most beneficial...
Tomorrow I get to explain to a doctor why we as a family are choosing not to participate in a medical study... it has felt like I can't share that with many people because most people think that you need to take every opportunity as it presents itself and for a long time we lived like that... and we got burned so many times... between nih, the failed botox, the studies that caused more harm then information... we have done a lot of things that did not provide fruitful results that now we are more selective... and I get that it might be hard to understand because it was once hard for me to understand too.. but for the sake of the kids overall we need to look at all of the pieces in the situation and choose what we think is going to be most fruitful and what lines up with our goals the most... and the study that we are going to talk about tomorrow doesn't check off enough of the boxes to make the sacrifices right now... that might change some day. It doesn't mean that we have given up... it means that we respect our children enough to want balance in their lives... they are kids first. While their medical stuff effects everything else in life, it doesn't mean we need to sacrifice everything else in our lives to jump through unfruitful things.
I have seen how our views on this all has changed over the years and I have seen how we have moved from a place of desperation to a place of trying to find balance. Yes there are hard parts of our lives... Lydia had more then one weird medical thing in the last week and decided she needed to self prove the need for some supports this week which is always "fun" 😵 but we still seek to find the balance in the midst of it all.
I am also a person who questions myself all of the time. I am always questioning how I can do better and if we are making the right choices... trust me, some days it is exhausting to be in my brain... but that means I am always reevaluating things... I just try to be wise enough to be evaluating and making calculated choices and not rash ones. I also seek wise counsel. I look to people who are involved in our lives to help speak into situations. I ask input of others... and not just doctors... but all levels of our medical team which includes so many different people with different points of views.
So while this isnt a comprehensive medical update, because I think the days of those are done out of respect (that doesn't mean that I am stopping blogging, but once upon a time I would list all of the symptoms currently happening but some of those are rather personal so I am choosing to become more selective about sharing the little details of those things), this is a glimpse of where we stand wit ha few things right now.
No comments:
Post a Comment