Sometimes I forget my kids have FXS. It seems like my family lives in this little bubble around our house and our everyday routines become the norm. I've come so accustomed to the signs of over stimulants that it's second nature and I redirect the little person having the meltdown without knowing it. The knowledge of the abilities of my kids that I research and educate myself with is never ending. This is my normal.
In our world routine is key and schedules are kept so a 7 year old girl doesn't breakdown and cry because her hair isn't styled any later than a certain time every day. A two year old has to nap for so long or he turns into gremlin. A preteen has to be fed, properly clothed in the right textures, and relaxed or the rest of the day is shot by him not cooperating and getting violent. Lunch is served everyday at 11:00 and dinner is by 6:00. Each child has their own therapy routines, goal deadlines, and ways we've incorporated each developmental progression into everyday activity. Errands are done before noon and after school activities are talked about the night before so everyone is ready for the run arounds and nobody gets upset. This is my life.
I don't go to lunch dates and rarely venture to a girls night out. Play dates are far and in-between that I am not hearing what the average child's benchmark milestones are so my child's progress isn't compared to their peers very often, by me. I forget.
The other day we had a couple of our children assessed for their insurance qualifications. These were two days of grueling evaluations to see where they were developmentally. When Jess and I returned a week later for the results I was reminded of their delays. The charts and grids all familiar and the stupid little dots that showed how far below the line they were. The in depth discussions of what range of autism they fall under.
Then, a new discovery. A new test that our daughter must have to see how much hearing loss she has from the damage the tumors she had removed when she was a baby. Discovering she isn't hearing complete words, not being able to understand sentences being spoken to her. Mind blowing, a new heartache, more worries, more education I will fill my brain with to help her. A new adventure. My new fight.
Being reminded of those stupid dots below the line I realize within my little bubble I can't rate my children's abilities to their peers. I can't even compare one to the other on their benchmark developments. I use to be asked by their therapists "how is this child compared to this other child when they were this age?" I answered but then followed up with "but they are also so different in so many ways I can't compare. Even their personalities are so different they do thing different and at different stages. It's impossible to compare to each other." They no longer ask me that any more. Now I tell them when this one struggled with something similar to this, I tried this because of this. And it works.
In reality I do compare my children's progress though, but I compare them to themselves. I look at where they started and see how much they've grown and developed. Where were they a year ago and see their progression. Now that to me is mind blowing. I see them developing, it may be slower and not to the charts pace, but they are moving forward and growing. That's the comparison.
I get asked a lot how I don't go insane. I usually smile, shrug, and say it is what it is. They are my kids. But, I thought about it when I got home from the meeting and came up with this. This is what I was given. My husband and I asked for children, we made these beautiful creations of life. How could we not love them? How could we not try and give them the best life they can live? They are ours; they are us. They are our love. And, that I won't forget.
In our world routine is key and schedules are kept so a 7 year old girl doesn't breakdown and cry because her hair isn't styled any later than a certain time every day. A two year old has to nap for so long or he turns into gremlin. A preteen has to be fed, properly clothed in the right textures, and relaxed or the rest of the day is shot by him not cooperating and getting violent. Lunch is served everyday at 11:00 and dinner is by 6:00. Each child has their own therapy routines, goal deadlines, and ways we've incorporated each developmental progression into everyday activity. Errands are done before noon and after school activities are talked about the night before so everyone is ready for the run arounds and nobody gets upset. This is my life.
I don't go to lunch dates and rarely venture to a girls night out. Play dates are far and in-between that I am not hearing what the average child's benchmark milestones are so my child's progress isn't compared to their peers very often, by me. I forget.
The other day we had a couple of our children assessed for their insurance qualifications. These were two days of grueling evaluations to see where they were developmentally. When Jess and I returned a week later for the results I was reminded of their delays. The charts and grids all familiar and the stupid little dots that showed how far below the line they were. The in depth discussions of what range of autism they fall under.
Then, a new discovery. A new test that our daughter must have to see how much hearing loss she has from the damage the tumors she had removed when she was a baby. Discovering she isn't hearing complete words, not being able to understand sentences being spoken to her. Mind blowing, a new heartache, more worries, more education I will fill my brain with to help her. A new adventure. My new fight.
Being reminded of those stupid dots below the line I realize within my little bubble I can't rate my children's abilities to their peers. I can't even compare one to the other on their benchmark developments. I use to be asked by their therapists "how is this child compared to this other child when they were this age?" I answered but then followed up with "but they are also so different in so many ways I can't compare. Even their personalities are so different they do thing different and at different stages. It's impossible to compare to each other." They no longer ask me that any more. Now I tell them when this one struggled with something similar to this, I tried this because of this. And it works.
In reality I do compare my children's progress though, but I compare them to themselves. I look at where they started and see how much they've grown and developed. Where were they a year ago and see their progression. Now that to me is mind blowing. I see them developing, it may be slower and not to the charts pace, but they are moving forward and growing. That's the comparison.
I get asked a lot how I don't go insane. I usually smile, shrug, and say it is what it is. They are my kids. But, I thought about it when I got home from the meeting and came up with this. This is what I was given. My husband and I asked for children, we made these beautiful creations of life. How could we not love them? How could we not try and give them the best life they can live? They are ours; they are us. They are our love. And, that I won't forget.
