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November 16, 2014

Nianya's Law & The Holidays . . .


I have blogged about this in the past My own version of Murphy's Law.

Nianya's Law: If anything can go wrong, it will, at the worst possible moment!

My solution?

1. Always be flexible and have a back up plan.

This often means upsetting the plans of relatives or friends. If your special needs kids have sensory issues or food allergies, holidays can be trying at best. Make it clear that any plans are subject to change. Maybe that just means arriving late and leaving early and bringing your own food.

2. Know when to hold them and when to fold them.

Don't over book and be prepared to cancel or change plans at the last minute. Sometimes you or your special needs child simple are not up to going out. Holiday plans are not school. They aren't mandatory not matter what anyone else says.

3. Ask your special needs child to help you when you need it.

Never underestimate your child's ability to help you at least when they reach an age at which they can do so. If you prepare them in advance and ask for their help, you may just find that they can help you solve any contingencies.

You can always negotiate with them. Keep a list of items, food or outings they want and offer a trade. Help me now and you can have x later.

4. Stock up on fun surprises for those unexpected times when you are homebound.

There are always times during the year when you will be stuck at home, whether it's due to illness, snow or other bad weather. Break out the old videos, a new or old game, or simple crafts. If they miss their friends, there is always Skype.

This year, facing several weeks of recovery from my upcoming surgery, I'm having to constantly rethink our holiday plans. We had them all set way in advance, but luckily nothing was set in stone. Now I'm busy brainstorming new ideas for things we can do here with just the four of us.

After more than 18 years as a special needs mom, I have learned to ride out the waves when life throws them at us, and I know that doing so only makes our family stronger.

Nianya


November 11, 2014

ANYTHING CAN HAPPEN . . .

Happy Veteran's Day and a special thanks to all, including friends and family, who have served or are still serving in our armed forces.

It's anything can happen, day, week, month and apparently year. When talking about special needs kids, I always emphasize that it's vital to never underestimate their abilities.

The "Great Scot" (above) has had a phenomenal first semester in college. She's ASD and ADHD but she has worked harder than most people I know to get where she is and stay there.

Sometimes it isn't easy. Especially, when fate intervenes at your conference tournament, right after you win an award. (ASC Soccer).  The link says it all, so I won't go in to detail, expect to say that she was one of the players who fell ill at the Conference tournament.

And then, there's the Tazmanian Sheldon (left). One minute, he's lecturing you on the characteristics of wormholes (What is a Wormhole?). The next minute he's freaking out because he can't find a red, white and blue shirt to wear to school for his Veteran's Day program. Yes, he did find one after a 15-minute frantic search. It's underneath his jacket, which he wears everywhere. It's okay though, because he knew he was wearing the right shirt, even if no one else did!

Never underestimate the genius inside a kid with ASD and ADHD, especially when you give him a computer and access to the internet. Just make sure you have a really good Net Nanny!

And then there's me. It's hard enough to raise special needs kids on any given day, but my hat is absolutely off to parents who are going through cancer while trying to keep tabs on their amazingly special kids. It's overwhelming, even for a parent who has been dealing with overwhelming for years while standing on her head.

Our lives now are defined by a bright line - BC & AD (Before Cancer & After Diagnosis). We are all on a new path and our family will only grow stronger because of this.

Nianya

October 12, 2014

For now this post from another site says it all:

PRAYERS NEEDED: I have never been "Pretty in Pink." Nevertheless, the month of October has taken on a whole new meaning for me and our family. We have a long road ahead of us beginning with our first meeting with a surgeon on Weds. We are praying that this is a very early diagnosis!
In the meantime, I will continue to wear my eclectic black & gray and maybe a special pink pin or a bracelet. I am also going to take this opportunity to reinvent my blog for Parents with Special needs Children. I hope that as we get farther down this new road that I will be able to help other special needs parents who are dealing with this.

Nianya