Nianya's Twitter Updates
March 22, 2015
Having a child with #foodallergies and major #sensoryissues is always a challenge. We've been trying for years to get Taz to expand his food repertoire and have gotten nowhere.
When discussing fruits and vegetables with friends and colleagues who like to brag about all the healthy foods their kiddos eat, I always joke that:
Taz hasn't eaten a vegetable is his life, unless you count potato chips and french fries!
Problem is, I'm not joking.
Like all "good parents" we introduced Taz to vegetables first. Only organic baby food would do for our precious second child, whom we waited so long for.
We learned our lesson quickly. The fancy fruits and vegetables either came back up or caused hives and an asthma attack. Our precious boy had severe reflux and was apparently allergic to everything on the planet.
Long story short, all the jars of #EarthsBest went to waste, and by the time Taz could eat solid food and we had sorted out his allergies, he was on a very limited diet. #GFCF with multiple fruit and vegetable allergies added on.
Over the years we tried several times to reintroduce foods that Taz was no longer allergic to. We had only limited success and we struck out on vegetables entirely.
Fast forward to age almost 13 and here are a few discussions I have recently had with Taz about his diet.
- Seriously Taz, french fries are made from potatoes, whole ones are better for you. No way they're gross mom.
- Dude, you eat peaches in strawberry jello, why won't you eat peaches in peach jello? Duh, Mom, because the jello is orange (colored) and I hate orange jello.
- Why do I have to buy precooked hamburgers for you Taz? I can buy the frozen patties for much less and cook them in a pan. Ew gross Mom. I'm not eating something cooked from raw meat.
- Why didn't you eat your apple Taz? Uh duh, that's a red apple Mom. I only eat #goldendelicious apples.
Are you seeing a pattern here? If not, welcome to the world of the Tazmanian Devil.
Which brings me back to the title.
The other night DH and I were at the #DeKalbFarmersMarket stocking up on my #cancerfighting #antioxidant fruits and veggies, as well as our other favorite treats.
So I sent DH to get Taz's golden delicious apples and he also comes back with a bag of fresh shredded coconut. I looked at him and said "What are we buying that for? His response: Taz likes coconuts. My reply: There's no way he's going to eat that, he only likes ones in the shell that he can play will or use for art.
Needless to say, I won that argument. We got home and Taz took one look at the bag of coconut and said "That's coconut milk." "I hate coconut and I'm alleric to milk."
I really had to laugh at that one. I also had to give Taz's points for creativity. After all, he IS allergic to Milk. Cow's milk anyway.
Welcome to our world!
March 16, 2015
This past weekend I was sooo excited to put winter behind me and start my annual spring planting and trimming. We got our lakefront cleared, got bales and bales of pine straw and bought another dozen #knockout roses. I already have about four dozen in my yard and add on each year.
So while DH and Jessie planted the roses, I got out the big hedge clippers and started to cut back my massive hydrangeas. Less than five minutes later I quit in frustration and pain. I'm still recovering from major surgery and can't do most of the things I've done for years. Now I can add planting and pruning to my can't do list. It's getting quite long.
So I sat down on a bench in frustration and tried to convince myself that it's okay. It's part of my new norm. I told myself to remember that while I have a long way to go, I've already gone a great distance down this road.
As I pondered that thought, I looked at all the beauty and blessings around me. The Heron who showed up in my stream yesterday morning. Taz, who has finally recovered from a winter full of asthma and croup and who was happily paddling his raft around the lake while we worked on the yard. Having a husband and daughter who don't balk at spending every other spring weekend going to nurseries with me and then planting everything I bring home.
Nianya's version of Newton's Law - For every frustration, there is an equal joy. I just have to take the time to look for it.
March 14, 2015
Today while looking in Taz's closet for dress clothes to wear to his friend's birthday party, I realized just how much time I've lost while dealing with cancer, working a full time job and raising two special needs kids. I couldn't find a single sweater that would fit him and he grows very slowly. Majorly dropped the ball on that one.
I always manage to buy school uniforms but apparently I have skipped the necessary dress clothes for the past couple of years. Worse, we've gone through the whole winter, which was a really cold one, and I haven't been shopping once. At least not at stores that sell preteen boys clothes.
Of course I practically live at Sam's Club and frequently go to BJ'S, but neither of these stores sell clothes in his size. Here's a shout out to both of these stores to start carrying a line of clothes for kids in between, i.e., not babies and toddlers, and not adult sizes.
Of course the real point is that I have no energy to shop at any store other than ones like Sam's Club were I have to go anyway to get bulk foods, prescriptions and household items.
The days of hitting the Outlet Malls are long gone and I only go to the mall if I absolutely have to.
Here's a perfect example. I recently needed some makeup that I could only get at a department store. So I go to Macy's and the requisite counter and the person there who was "filling in" could not find what I needed. She asked me to come back that afternoon when the regular person would be in. I guess she's used to people who go to the mall for hours on Saturday.
I wanted to say "Hello, I'm only here for one thing, I haven't stepped inside the Mall for ages, I'm recovering from cancer, I have a sick #SNK child at home and I am Not coming back later!" That would have taken more energy than I had, so I bought a couple of other items and left without the one I came for.
It's hard enough being a mother to special needs children, but when you face your own illness and multiple surgeries too, it's beyond overwhelming.
Today was a perfect example of how I roll these days. I pulled out a pair of jeans, a school Polo and a school jacket and gave them to Taz. Then I made a mental note to buy him some nice sweaters between now and next winter. It's on the list along with so many other tasks that probably won't get done.
I'm trying to plan a special 13th birthday party for Taz in the next couple of weeks. The race is on and I can't even keep up with the tortoise. Anyone got a hare I can borrow?
My kudos and praise go out to any mom who can do more than the bare minimum while dealing with her own illness and raising special needs kids. Some days even the bare minimum is just too much.
On the bright side, I did manage to photograph the winter ball for Taz's school this week. It's something I do every year and really enjoy, and TG Taz's only suit still fits. I was exhausted afterwards but really enjoyed it. It's nice to know that a few of my favorite things are part of my new norm. And I learned a longtime ago that the world isn't going to fall apart just because I drop the ball.
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.