One of the biggest things that you need to do when dealing with special needs is to remember to be flexible. It means if something isn’t working in your life, in your loved one’s life or in the overall scheme of care for any requirements that you need to maintain a great quality of life (or at bare minimum a decent one), stop and re evaluate.
When Arianna had her VNS (Vagus Nerve Stimulator) placed in her, Sharren and I were scared and we weren’t sure if that was the right thing to do. It was to help Arianna from getting seizures. For a few years, it turned out that it was okay because based on what we were seeing, we saw Arianna grow and thrive.
We had the VNS turned off over a year ago because of some problems. It didn’t seem to be helping her anymore. and it is looking more and more that Arianna and other Rett Syndrome girls suffer from dystonia, which causes seizure like symptoms. We had Arianna’s VNS removed a few weeks ago and she is doing great now. She had partial paralysis on one arm and her cheek and that seems to be sorting itself out.
Each person’s situation is different and what works for one,may not work for another. So, if the VNS is working for you or your loved one, super. If not, you may want to consult with your medical team and reconsider.
Try to make the best decisions you can at the time with the advice from the medical community and people who have gone through what you are going through before. It isn’t easy and it isn’t always a straight line.
Be willing to keep an open mind on some things and on others, particularly your children’s, partner’s or your health, be certain that you don’t do anything to make things worse.
The same holds true in less serious situations. If there is a certain activity that can’t be done because somebody is under the weather that day, make sure that you reschedule to get to it another day. One example would be soccer practice if your child is in AYSO (a great program by the way that just finished it’s current season).
Be sure to err on the side of doing more fun things than less if you can to keep joy in your family’s life. Notice that I said “fun” and that shouldn’t be equated with “expensive” or even “things that cost money to have fun”.
But that is for another article.
In the meantime, relax, stay flexible and remember that there will always be things that you HAVE to do. Know the difference so you can know what things you might WANT do. When well-meaning friends or relatives start up with you, take a second, sit down, listen and try to avoid punching them in the nose. Realizing that you know the best things to do for your situation, it sometimes doesn’t hurt to listen, you might hear something or read something in one of their emails that might make sense or open a new perspective for you.
If they are just ranting or aren’t opening that new perspective, you still can be flexible enough to forgive them and save being the tower of strength when you need to deal with hospital stays, school preparations, dealing with government agencies, and jerks.
Just a reminder that if you run a business or are dealing with your day job to do what you need to do to stay open and keep working. In this economy, you need to keep an income stream.
My thoughts and prayers are with you, and of course, please stay flexible! Try to have a happy holiday without spending too much money! If you are also interested in trying to deal with our current economic situation, you may want to check out my book.
Kim Isaac Greenblatt
