When your child first gets a diagnosis with a disability they are usually under age 5. I remember the first year of our journey being so overwhelmed just in figuring out what this "autism" was and how to help my son. The other thing overwhelming was helping my son to talk and figure out what was wrong or what he was needing.
All of it was hard.
It was challenging.
That time I was really just trying to survive and educate myself on all of my son's rights. School is one of the toughest times in finding the place that works for them the best. Most families change schools a minimum of 5 times before their child turns 13 years-old. Yes, that is true. Most of our kids struggle with transitions. Let's admit it, it is hard for us parents too to change.
Our focus of what we care about them learning may change year to year.
Many years inclusion (him being with his typical peer group) was my main concern. It then changed to wanting meaningful inclusion and making sure all inclusion staff were on board. I have seen inclusion be absolutely horrible and in fact be a detriment to the child when all aren't on board and behind it. I have seen great things happen when the teacher has an understanding of grace and has a heart to help with some patience in there too. Our kids gain such great skills when they are with their friends who don't have the same struggles.
We are bombarded with what they "need" to know. Every parent meeting whether you see the tears or not we are always at least crying inside. We are always hearing how far behind they are over and over again.We get all different opinions on what they should be doing by now. We compare our kids sometimes who has the hardest challenges and who doesn't. This is the area I get frustrated the most. Everyones story is unique and challenging. We need to encourage one another no matter the story. We need to listen to one another.
I have been on this Autism journey now for over 14 years. I have seen so many things with my own son and with other students/adults as well. It is a fine line of helping too much and not giving enough support for them to thrive and show us what they can do. I am a Behavior Analyst and I still prompt too much sometimes my son to do his daily living skills. I know it is hard when our kids process slower or can't give us the words/signs to communicate. We want to jump in and help. The other thing is the list of what our kids need to learn still could be vast and long. That can feel so overwhelming so we don't do much. I think all of our goals are to see our kids living on their own or at the least caring for themselves as best as they can.
If those are our goals then what are you doing each day to help your child reach those goals?
Are we requiring schools to include them more?
Are we requiring our kids to be more social in school or out in the community?
How are we empowering our kids without getting in the way or doing it for them?
Are we making sure that our kids are not isolated?
Are we helping them or holding them back?
Always think of the end in mind. The end for me is Charlie living on his own the best that he can do. The end for me is my son has his own job that he loves. The end is my son has friends that he hangs out with. The end is my son is happy and a valuable part of his community. You always have to create goals that you have to reach out to try and accomplish.
Goals should drive us to work harder.
Goals should keep us from giving up.
Try your best each day to ask yourself, "Am I helping or holding them back?"
What are your goals to get your child where they need to be?
How can you help them to achieve those goals?
There are often great teams of support for all our kids, reach out to all of them to help achieve those goals.