I find I like to tell people Meghan does school from home when people ask - rather than saying we home-school. Then I don't go into a defensive explanation of why. I feel like they imagine me teaching her quietly at home and how she will somehow turn out damaged and unable to contribute to society.
I've decided people are wrong. She is not turning out damaged, and she will be able to contribute to society. She has a chronic illness. Choosing school at home for Meghan was one of the best things we have done. It hasn't been easy. And there were definitely times I regretted it and wondered what in the world we were doing. I will admit that. It was a huge transition. But I have seen a lot of maturing in the past 6 months. She has been through a lot and it isn't easy to deal with a chronic illness - let alone when you are diagnosed at age 12. Meghan prefers to plead the 5th. She knows how people react to her being different and doesn't want their judgement.
But I know it is important to have contact with outside groups - as much as possible. Meghan used to have panic attacks about going to school brought about by a combination of reasons. A big one was sleep issues - often sleep is hard for those with POTS and the looming pressure of having to be up by 6am made things stressful. The cycle of not being able to sleep worsened. Many many times it would be after midnight and she was still up panicking about getting up in a few hours - then symptoms would be out of control by the morning. Another huge source of the anxiety attacks was the lack of understanding from other students - not to even mention the not feeling well part and not wanting to appear like she needed special help. But she was certain she didn't need the interaction that school would provide her and that school from home would be the answer.
Meghan's IVIG treatment plan has allowed her to get back to competitive swimming and her club team. It has been a slow process but she now swims 6 days a week for 50 weeks out of the year. We are just coming off her only break of the year - two weeks of no organized swimming. A few days into the break, she told me she was sad and didn't know why. She would cry before bed - and then it hit me. I told her she missed her friends and the interactions with others that her team provides. It was a huge revelation for both of us. She was so convinced she didn't need to physically go to school or be a part of other activities when we started school from home. She has since changed her mind.
Not everyone has an outside activity that they can physically do or group they can join. Before being able to return to swim we tried some light volunteering at a local cat shelter to give her a sense of worth and also interaction with others. I think finding something that she could do, no matter how small, was important for moving forward. Start small and just take things as they come. I always tried to figure out the world in one day. As I've said before, it helped when I stopped doing that.
It's a process. You may feel despair and that you will never get past a certain situation, but breaking things down into pieces you can take care of, no matter how miniscule they seem, help. I didn't think we would ever get to a place of getting homework done. Or Meghan wanting to go and do things with friends. She used to have to kiss me 10 ten times and tell me she would miss me or that she didn't want to go when it came time for activities outside our home. This week there were 2 times I didn't even get a kiss when she left. A bittersweet step forward. Feeling better about managing symptoms and a GREAT deal more maturity has helped volumes. She needed to work through the emotions she had about her illness and it took time (and will continue to).
As we start to see maturity coupled with the improvements IVIG has given her, we can start to focus on addressing anxiety and other issues that went by the wayside as our lives where in chaos. Sometimes simplifying things can allow you work on your health or allow you to find a treatment plan. I don't know what the future will bring but chaos and despair did not work well for us as we went through life trying to find answers and frankly just get through the day. For now swimming is her outside interaction where she deals with many personalities and is held accountable for her actions. She takes care of talking through issues with coaches, signs up for her meets, picks her events, plans how we fit it all in. She often has to step outside her comfort zone and do things she'd rather not. We are thankful for that.
I am in several facebook parent/patient support groups. They can be overwhelming at times - the sheer number of posts and people looking for help is something you would have to see to believe. I recently read a post about a parent frustrated with their teen with POTS refusing to do homework because of anxiety, stress, and not ever feeling well. They would take away their phone as punishment and the teen would become suicidal and it would escalate into an unmanageable situation. We have been there. It is not a good place to be in. One person commented on the post that they needed to take the teen to a juvenile detention facility and show them this is what happens if they don't finish school. I have to admit that there were times with Meghan I felt the same - but that was before we knew what was happening to her body and how she felt inside. You many need outside help with dealing with symptoms, someone to talk to, and definitely an enormous amount of patience. Things will likely not improve until they are ready - and they may need help in finding that readiness. Do what you can to get through a situation and make small steps to your next goal, whatever that may be. Letting go of the need to to conform to anyone else's standards was huge for us.
School from home allows us to manage the symptoms as needed and still get school work done. It helps us manage the stress to get to doctor appointments and find the medications she needs to allow her to function and enjoy things in life. Some days stomach issues bother her. Some days fatigue. Lots of times it is brain fog. Forcing the situation and escalating things to levels of threatening suicide will not motivate her to do her school work. School at home doesn't have to be forever. It might be temporary or just the best choice. Online schools have improved greatly in the past few years. Several universities now offer online high schools. A combination of online schools and a few public school classes can also be an option. A whole new world of opportunities are now available that you may not know existed. Meghan is taking Ocean Biology right now and loves it! I'm hoping soon she will start doing more volunteering in awareness projects for POTS. Not quite there yet.
We are now in our second semester and have learned so much on what works and what doesn't. She's changed how she approaches her day and knows how to better manage her time. At first she was often overwhelmed at what needed to get done each day. She locked up when she had to do her first project. I helped her turn it into a basic powerpoint slideshow done step by step with the project directions. She is learning to break it down into smaller pieces and do it on her own. I don't get many questions lately as she works through each subject. Math is a little trickier but we have found a teacher who stays at home with a young child that offers some tutoring. It helps her get through the rough spots and keeps our relationship sane.
Meghan takes care of her school work mainly on her own now. Rarely does she need my help. She likes being in charge of it. We have a proctor that comes and gives her the tests and makes sure she's on track (requirement for NCAA if she decides to swim in college). You can find a proctor through your local library or often retired teachers or substitute teachers are good sources. I have found that we can typically find some sort of solution to things that keep popping up along the way. I don't give up very easy...