Nianya's Twitter Updates
November 16, 2014
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!
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.
November 11, 2014
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.
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.
August 27, 2013
For all the parents out there who are just getting a special needs diagnosis or who are completely overwhelmed, I have one line of advice that will get you through the tough times.
NEVER UNDERESTIMATE YOUR CHILD'S ABILITIES
That applies to us as special needs parents and everyone we come in contact with. Be it schools, relatives, or the public in general.
I have a high school senior who could not speak at age six and barely spoke when she was 10. Now she's speaking to college soccer coaches AND impressing them enough on the field to get potential offers for college.
I also have a 6th grader who nearly failed the 5th grade. This year he's going around bragging about how he tested out of 6th grade math. If you ask him what grade he's in, he'll say I'm in 6th this year, BUT I'M in 7th GRADE MATH!
April 2, 2013
World Autism Day
This day takes on new meaning each year in our house. Last night I thought this site had been hacked because it was forwarding to a political ad site. Turns out there was malicious script that was somehow connected to an Autism article I wrote about or link to.
Never a dull moment for us.
Taz a/k/a The Tazmanian Devil went to school with welts. He says they are from playing with insulation. . . more like playing with poison ivy. Of course the school called a short while later to say that he can't keep his cortisone cream with him. We'll see how that goes today.
On the upside, Jessie had her big Wax Museum project today at school and I was blessed with a day off to go and photograph the kids. For a girl who could not speak until she was 6 years old and barely spoke in public until a couple of years ago, it was an absolute joy to watch her dress up and give a speak about MIA HAMM, who as Jessie said, is largely considered to be the greatest female soccer play in history.
Jessie's report was aptly titled: MIA HAMM - FROM ADVERSITY TO THE WORLD CUP. Mia Hamm, who was born with a partially clubbed foot, is definitely an inspiration for a girl who was always very awkward and could not speak. At 17, Jessie has been playing competition soccer for years and is looking forward to playing in college, hopefully on a soccer scholarship.
Which brings me back to Taz. He has struggled this year in 5th grade, but he excels when given a project that draws on his creativity. He created a diorama last night of the Tabernacle from ancient history for his bible class. He did the work all by himself and it's really quite impressive. Although he struggles greatly with reading and writing he can express himself beautifully through his art.
Our whole family struggles with adversity but we can accomplish anything if we dare to dream!
September 5, 2012
No matter how old your special needs child is, eventually he or she will attend school and issues with teachers/administrators will arise.
Depending on the school your child attends, you may face issues throughout the year or just transitional issues with each new class/teacher. If your child is in public school you'll likely go through the IEP process.
Having a written plan is great, but you still have to make sure it's implemented.
If your child is in private school, you'll need to work with the administration and teachers to set up an educational plan.
Georgians also have the option of using the SB10 special needs scholarship to help fund private school tuition; however, once you elect the scholarship you give up your rights to the written IEP.
That said, you can still find a school that will work with your child within the guidelines written in your IEP.
Regardless of your situation, as a parent, you are your child's best advocate. That means:
- Always Be Prepared: Keep written notes and documents at close hand.
- Be Proactive: Set up private meetings with teachers at the beginning of each year.
- Communicate Constantly: with teachers, preferably via email so you have all the info in writing.
- Know Your Child's Best Needs: What works best for your child before you go into meetings, such flexibility in schedules, modification of work, asking for a particular teacher, extra tutoring etc...
- Have an Alternate Plan: If your current educational plan isn't working then figure out what changes your child needs to succeed.
- Never Panic: Work through the crisis in your head and on paper before you go into meetings.
As the parent of two SNKs, I've been through dozens of these meetings in more types of schools than I care to imagine: Montessori, Public, Charter & Private. Every year, both of my kids face crises that always have to be dealt with immediately.
I learned a long time ago to keep written records of everything, and I learned what works best for each of my children. You never know when you'll have to face a SUDDEN STORM: change in doctors or medication which effects your child's school performance, a sudden change in teachers that just doesn't work, an illness that throws a complete wrench in your child's routine or an annual transition to a new classroom/school that just doesn't work out.
This year our son, moved to middle school at his private school. He went from 1 teacher/1 classroom to 3 teachers/3 classrooms. Can you spell HURRICANE? And we saw it coming, but still weren't prepared.
One month later it was fast turning into a Category 5.
Today I went into a teacher meeting with a worse case scenario--the possibility of having to move the child back to his teacher/classroom from last year who would continue teaching him his current curriculum without changing classes.
I thought that was going to be the end result and was prepared for it. Instead I found that the teachers were all willing to work with our child through a series of modifications.
In other words, we modified his plan, rather than scraping it and going with a new one. We're going to ride out this storm head on, but we're battening down all the hatches!
At the same time we let the teachers know that we are 100% on board with enforcing the new plan on our end. If they send home written homework assignments we will see that they are finished correctly, and turn back in. We will work on our child's organization skills (zero) with his teachers' help.
Long story short, no education plan will work unless every player--teachers, administrators, students and parents--is completely on board and willing to work together to ride out the rough seas.
We are all in the Educational Boat together!