Month: March 2020

Part of living the special needs life can be picky eating. Due to sensory issues, personal preferences, behavior outbursts when the status quo changes and more, your child may have only very specific foods that they want to eat each day. I know my son certainly does.

So, what do you do when in this time of pandemic and less supplies than the norm, your child’s favorite food just isn’t available?

My son, Kai, is eight years old and has eight different medical and education related diagnoses. He spent an entire year choking on baby food (entirely pureed, not chunky) at every meal to the point that he needed intervention daily. As in, if we interceded and failed at clearing out his airways, he could have died. Let’s just say that I got really good at the hook method (which was what was advised at the time).

Eventually, Kai mastered eating baby food without choking with the help of a feeding therapist and we moved on to other soft foods. He is also able to eat things like cookies, cake, muffins and ice cream without issue now. But those are mostly treat foods. His main diet at this point consists of the Wal-Mart store brand version of Chef Boyardee canned pastas (up to six cans a day when he’s in a growth spurt), applesauce, pudding, fresh banana, 1% milk, store brand vanilla wafers and sometimes a bit of water or juice. Of course, his dad and I recognize that this isn’t the healthiest diet but it is a work in progress and we are extremely grateful that he no longer chokes when eating.

Kai receives school meals in addition to what we send from home with the goal that he will try new foods if he is presented with them every day. At school, he has apparently tried a cinnamon roll and french toast sticks with success. Again, not the healthiest. But between texture issues, stubbornness and preferences, this is where we are and we are actually thrilled at the progress he is making.

So what to do during a pandemic, when the Wal-Mart brand pasta is totally out of stock and we are stuck in the house 24/7? Especially when there is no parenting break, even for school or therapy and we are exhausted?

We know as special needs parents that many things are trial and error. So, the first thing we tried to do is make something similar, homemade. It was rejected after many texture explorations on Kai’s part with his lips. The pasta was never tasted. The sauce I snuck into his mouth, also to be rejected.

The next thing we tried was to buy a similar product. The only thing available at first was Chef Boyardee mini ravioli (Kai likes Wal-Mart brand macaroni with beef in tomato sauce best and then the same brand mini ravioli second). When presented with this, Kai ate it but wasn’t thrilled about it. He absolutely knows the difference between the brands. Also, after a couple of cans of this, he started getting diarrhea, which is not an issue with our usual food.

The third thing we tried was to back off on canned pasta all together and try to get him to taste other things. Homemade chicken and dumpling broth – rejected. Homemade spaghetti – rejected.

Finally, we were able to get our hands on some Chef Boyardee mac and beef in tomato sauce. Kai eats it enthusiastically, although not as happily as his usual. Big sigh.

You know that the situation isn’t over, though, because availability is inconsistent and will be for the foreseeable future. So what lengths am I willing to go to? I will let him eat more treats if that is all he will eat. I will continue to try to make new concoctions and present them. I will purchase things that I normally wouldn’t keep in the house (cinnamon rolls, I’m looking at you) and I will try not to take this so seriously if Kai eats less healthy stuff until this pandemic is over.

Between home schooling, no breaks, erratic sleep, lock down, self isolating, etc., I know that I need to be more flexible than ever. After all, if WE as caregivers feel uncomfortable with the changes, can you imagine how OUR SPECIAL NEEDS KIDS feel when they thrive on consistency and suddenly their world shifts?

Do your best and let the rest go. Breathe. As long as they eating SOMETHING, ANYTHING, they will not starve to death.

Smoothies, anyone? Served on a spoon, of course. Maybe we can sneak in some fruit!

What challenges are you and your child with special needs going through during this pandemic? Please share in the comments below.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

The world is a funny place right now.

The Corona Virus seems to be sweeping the nation, we are staying home, practicing social distancing and the parents of typical kids are wondering how they are going to handle it. How will they work full time jobs AND teach their kids at home? It is a daunting task. Especially for those who are not, shall we say, educationally inclined.

As I observe and participate, I see some interesting parallels between what these parents are experiencing right now and what we experience as special needs parents.

Parents of typical children are being asked to practice social distancing. We special needs parents do this all the time. Maybe your child is medically fragile and so you stay at home. Maybe they can’t handle outings emotionally (or maybe you can’t right now). Perhaps you would like to go to a party that you have been invited to but you don’t think that your child can handle it. In these and so many other scenarios, we special needs caregivers practice social distancing. It is sometimes peaceful but often lonely. We want to be part of a community but we haven’t figured out how to balance our roles as caregivers with our individual needs as people. Or, right now, the most important job in the world, caring for our amazing children, doesn’t offer that luxury.

Typical parents are being given alternative methods for learning for their children. At least, for now, the typical classroom experience isn’t happening. Surveys are going out – do you want your child to do their schooling online or as a packet that they will send home? Never mind that perhaps the typical parent hasn’t done math equations like they are presented now. The typical parent may feel at a loss as to how to help their child be successful. They will have to check with others to see what they are doing, use trial and error, fail and retry until they are successful.

This reminds me of how the special needs parent has to help their child learn to be successful. It reminds me of how it took at least 25 other attempts that failed before I figured out that my son COULD learn letters and sounds but only if I presented them in water in the bathtub with daily repetition for TWO YEARS. No, the typical parent won’t have to do this for two years (hopefully) but it isn’t that different.

Schedules will have to change. The typical parent may have to work from home while also teaching their child at home. They may have to wait until their child goes to bed and lose sleep to finish up what they needed to accomplish during the work day. Sound familiar?

At first I smiled when I saw the struggle that these typical parents were presenting. I thought, really, it isn’t so bad. After all, look at what we as special needs parents do in a day! But then my smile faded as I realized that their path is similar to how I felt when I first became a special needs parent. This isn’t the usual. It’s not the status quo. No one has any experience doing it this way. They are worried about making a mistake. Teaching their child wrong. Not being able to live up to the task. They are stressing about how they are going to make it all work.

It is a very familiar description to me. I bet it is to you, too.

And so, as I would hope that people would step up to help special needs parents walking the walk, I salute and support these typical parents. This isn’t going to be easy. They will make mistakes. It will not always go smoothly. But this is the most important job in the world. It is for their incredible child! And they can do this.

We know. We do it every day.

GOT ENERGY? Support a typical parent in this time of confusion. OUT OF ENERGY? Send an encouraging message. We as special needs parents know how meaningful that can be.

As time moves on, the typical parents will return to their typical lives with their typical children. This is only a taste for them of what it is like to have their world turned upside down. For now, be patient. Show kindness. Help lead them as they walk a version of our walk. Listen to their complaints and their fears and cheer their triumphs. As only we can.

They need us.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Burn out is a very real state of being for the special needs caregiver. This is the greatest job in the world but it is 24/7/365. So tired that you want to drop? You aren’t alone. Right now, there are caregivers all over the world feeling it with you. We are just doing it separately because, you know, its SPECIAL NEEDS CAREGIVING.

Here are 10 things to help you get through when you are wiped out.

1. Just show up. You don’t have to feel well-rested, motivated, in a positive mood or upbeat to accomplish this. Show up for your child (as if you ever wouldn’t).
2. Remove everything that doesn’t HAVE to happen today and just do what NEEDS to be done.
3. Drink water. Eat something healthy. Maybe something that grew the way you are eating it, like an orange instead of the juice? A baked potato instead of fries?
4. Refrain from making any decisions until… For me it is until I have had morning coffee. What is something that helps you make decisions better after first waking up? Do THAT before making the decisions.
5. Forgive yourself. You made mistakes or didn’t do things to your standards or dropped the ball. It’s OK. Let it go. Pick things back up as you are able.
6. Do some self care. You knew that was coming, didn’t you? Don’t know where to start? Search it on Pinterest or Google it. There is a whole world of information about it.
7. Some days you win, some days you lose, some days you about break even. Accept this and know that if you lost, you will also win soon.
8. Do something small that you feel that you can accomplish. Maybe the dishes are piled high in the sink but you can’t bear the thought of dealing with them. Plus the dishwasher is already full of clean dishes. Just start by putting away the clean silverware. Come back for the next small chunk later. Keep going until the whole is done. Time spent for the project as a whole doesn’t matter today.
9. Ask for help. We caregivers SUCK at this. And we are often the ones that most need it. If you feel like you can’t delegate care of your child, because NO ONE DOES IT LIKE YOU DO (sound familiar?), try to ask for help for other things. You know, like those dishes.
10. Remember that life is cyclical. You will have days where you feel strong and days where you are so burnt out you are literally crawling to the finish line. If you are having a hard day, remember that an upswing is coming!

Don’t forget to take a minute and admire your beautiful child. Sometimes in the quest to accomplish we forget the beauty and joy that they are.

Pause. Notice. Refresh. Reset.

You’ve got this.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!