Month: October 2019

Everyone has holes in their knowledge. Some of them are little and don’t really matter in day to day life. Some of them are huge and could be the difference between life and death. But everyone has them.

Some of the holes in my knowledge over the years have been very entertaining when they have come to light. Before I share them with you, I would like you to know that I have a Master’s Degree in education and am certified to teach both general and special education. I am what they call highly qualified. I can teach ESL to people of all ages. Sound impressive? None of this makes me immune to holes (and also, it doesn’t mean I am particularly brilliant in general, but that’s for another article).

In no particular order, some of the holes in my knowledge have included:

-thinking that the District of Columbia was a tropical island.
-not realizing that the name Boo’s for an alcoholic beverage store was not just a cute nickname for someone’s partner but was also a joke pertaining to the word booze. I figured it out one day after passing it for YEARS.
-thinking that a beer garden was a place to sit outside and enjoy nature while also drinking a beer.
-identifying cars only by color. I STILL do this.

There’s more, but I am already embarrassed to have shared these. So why have I shared them? Because I want you to know that EVERYONE has holes in their knowledge. EVERYONE.

Sometimes when living the special needs life we run into people that APPEAR so SNOOTY, so INTELLECTUALLY ABOVE EVERYONE IN THEIR OWN MINDS, that we can feel inadequate. Small. Less than. Not as qualified.

Have you met these folks?

Maybe they work in your child’s school. Maybe they are therapists. Doctors. EXPERTS. They speak using big, area specific vocabulary that you may not know. And the way they present themselves, you don’t even want to ask because they make you feel so DUMB, so much LESS THAN, that you cannot bear the thought of proving your inadequacy by telling them that you have NO IDEA WHAT THEY ARE TALKING ABOUT.

So you don’t ask. And because you don’t ask, you still don’t know what they are talking about.

But, here’s the problem. What if they are talking about your child? What if you need to know the information to make a very important decision?

I want to tell you something. Not only do you have every right to ask people to clarify what they mean if you don’t know, these folks HAVE AN OBLIGATION to explain things in a way that you can understand. And most of them actually want to. They often don’t realize that they are intimidating you. And they sure don’t know that you don’t understand unless you speak up.

So ASK. Because you need to know the answers.

And, on the off chance that one of these professionals is snooty to the point that they sigh, or roll their eyes, or seem bothered by having to break it down for you, guess what? You can FIRE THEM. And you should. Because your child is the most important person in the world and deserves only the BEST on their team.

What do effective caregivers do when they don’t understand what is going on? THEY ASK. This is what sets them apart from the rest of the crowd. Remember, I have a Master’s Degree IN EDUCATION and have no idea what half the acronyms mean that are thrown around in school meetings. So I stop them. I literally say, “I have absolutely no idea what you mean. Could you explain it to me?” It is THEIR JOB to make sure that I understand what they are trying to communicate. Same with therapists. And doctors. And hospital staff.

We as caregivers simply do not have the luxury of playing along to save face. The most important person in the world is counting on you. Your CHILD. You are the expert on your child and they are the experts in their chosen areas. You are a team.

You are equals. Don’t ever think otherwise. Now go out there, get clarification and continue to kick ass.

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!

My daughter, Amaya, is 9 and a half years old (the half is very important). She is bright, brilliant and beautiful. She loves girly things such as sparkles and unicorns. But she also is a talented Tae Kwon Do student, loves to play Minecraft and is on a math competition team at school. Did I mention that she had straight A’s the entire school year last year? As you can surely tell, I am enamored. My amazing daughter rocks my world.

But there is something else that makes Amaya incredibly special and different from her peers. Amaya is big sister to a brother with special needs.

I doubt that Amaya remembers a time when Kai wasn’t in her life. They are only two years and eleven days apart in age. And we discovered Kai’s first diagnosis (he has about 8) when he was 18 months old. So Amaya was 3 1/2 at that time. And that means, her memory of her entire life has always included a younger brother with a “special brain.”

We first told Amaya that Kai had a special brain when she started asking questions like, “Why isn’t Kai walking yet? Why isn’t he talking yet? How come my friend’s little brother or sister is doing FILL IN THE BLANK HERE but Kai isn’t?”

We simply said that Kai was born with a brain that is special and different than other people. And so he may or may not be able to do these things. And that this was OK. And that we loved him just the way he was. And little Amaya just went with our flow. “OK!” she said. And it was no big thing.

As time went on, the differences became more obvious. Kai was stimming. He was choking at mealtimes. He still wasn’t walking. Or talking. Amaya would explain to anyone who looked at Kai (and people were starting to, because he was starting to look very different) that Kai had a special brain and that he just did things a bit differently. Her friends were usually very accepting once the brain situation was explained. Their parents, well, they had a harder time with it. But most of them came around.

We (Mom and Dad) got shirts that said #TEAMKAI on them. Amaya wanted to know where the #TEAMAMAYA shirts were. We tried to explain but that one was a little tougher. As she matured, the question changed to, where was Amaya’s #TEAMKAI shirt? She was starting to understand.

Eventually, she got a little jealous. He was getting a LOT of attention and even though we always made time for her, sometimes it was hard. We were often focused on Kai, his rotation of EIGHT different therapists that traipsed through the house on a weekly basis and his tiniest achievements created an uproar of celebration. Why was his brain SPECIAL? Wasn’t Amaya’s brain SPECIAL too?

In a moment of deep sadness and at a loss for a better explanation, I had to explain that while we used the term special, we could also use the term broken (I was trying to SIMPLIFY to a level that young Amaya could understand and I hated saying it that way but she needed to understand). Kai’s brain was broken. It didn’t work like our brains worked (to this day, that statement makes me ITCH but I did the best I could. After all, what one person says is broken, another person could say is fabulously different). Amaya seemed to really grasp the situation after this explanation.

As time has progressed, Amaya has become an incredible support for Kai. Kai is a side by side player, which suits Amaya just fine. They do their separate things in the same room and they coexist happily. Amaya is a caregiver for Kai. She takes his tablet away at bedtime and tells him, “Tablets all done,” in a sing-song voice. Kai sees this as a sign that it is time for bed. She guides him to the places we need him to go, runs to grab things from him that he shouldn’t have, steers him out of the bathroom where he likes to play and make a mess and she does it all with kindness and a sense of humor.

Amaya often has to give up a lot because of Kai. Even though she is 9 1/2 and Kai is 7 1/2, we cannot go to a movie because Kai is developmentally about 18 months to two years old and cannot sit through one. Amaya needs to either not have small toys or hide them because Kai could choke on them. Sometimes we don’t go to events because Kai wouldn’t do well at them. Or we go but leave early. Kai will steal cookies off of her plate. Amaya stays calm because the house rule is that if Kai steals food off of your plate, you get replacement food, no questions asked. She runs for bags for dirty, poopy diapers and takes the full ones to the trash. She tolerates the spectacle that Kai makes when we bring him to the Dojo for her karate class and he is loud or lays on the floor. And she knows that this is part of living the special needs life.

Even though Amaya is so young, we had to have a really hard conversation. Because eventually, her Daddy and I will die. This is life. And we need her to care for Kai. She does have three adult siblings (I married a man with three kids and he had custody of them) and the oldest is the first caregiver assigned. But eventually, in her twenties, Amaya will take on a stronger role. When asked, she agreed to this immediately and sometimes questions how she will handle this. I have told her that I will make sure she has enough money and lots of instructions and that her siblings will support her. But it’s a lot to ask. She didn’t commit to having this responsibility when her father and I decided to have a baby, we did. But, we have no choice. We won’t live forever and we expect Kai to outlive us. It weighs heavily on my heart. But there it is.

Today, Amaya had no school. Kai did. They are on different schedules because Kai goes to a completely special needs campus (no inclusion for my low-functioning angel and that is the right placement for him). On days such as this, where Kai is otherwise occupied, we try to do things together that we can’t do with Kai. We went to the Halloween store and picked out the accessories for Amaya’s Halloween costume. We went to a movie, played games in an arcade and went out to lunch. Just Daddy, Mommy and Amaya. It is a glimpse of what it would have been like had we never started living the special needs life. Just doing normal fun things without having to worry how Kai will handle them. How we will adapt our day for him. If we would have to leave early. And, of course, the usual stares in public are gone during this time. We just blend in.

If I sound sad about my life, I would like to let you in on a little secret. I am not. I missed Kai the entire day. I love our special needs life. But, while Amaya doesn’t know any different, I do. And, sometimes, we need to carve out special time and treat this amazing daughter, with the huge heart, incredible brain and talented, creative soul, to a day where it’s all about her. She deserves it.

My daughter is an incredible Special Needs sibling. I am so honored and awed that I have been given such an amazing girl.

Do you have a someone in your life that is an incredible Special Needs sibling? 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!

I hurt my knee. I have this ongoing goal – I want to be able to pick up my son and carry him for as long as I possibly can. You see, even though he is seven years old, he has eight different special needs diagnoses. Developmentally he is about 1 1/2-2 years old. And he loves to be held and carried and loved on. And as his Mommy, I love to do this. But it kept getting harder as he grew. So I decided to get in better shape.

I know that when you begin to get in shape, you need to start where you are. So last fall, I started out walking for fifteen minutes a day. That was where I was at, after a few very rough years where the last thing that I felt that I had time for was to take care of myself (I was SO wrong, but that is a discussion for another time). My ability level was low, my weight was high, my exhaustion level was higher. But this new goal, to do this for my son, was unlike any other goal I had ever had before. It wasn’t about fitting into a pair of jeans. Or looking pretty/sexy/normal/whatever. It was for my boy, the most important person in my world. For him, I would and will do anything. So I decided to do this.

After several months of walking, I was able to walk for almost two hours a day. Just walk. No swinging arms, no speedy hips, no fancy moves. So I added in light weight lifting. But I wanted more direction. So I hired a trainer. It just so happens that this incredible woman owns her own Crossfit gym. And after working out with her for a couple of months, I decided to go for it. I went to a Crossfit class.

Crossfit, to me, had an intimidation factor that was pretty high. It is almost a status symbol that you do CROSSFIT. It is pictured in social media as a brutal workout, done by those crazy gym rats. You know the ones – ripped bodies, protein shake chugging, rep discussing, intimidating as hell. I don’t think I would have even considered it except that my trainer was so phenomenal, I knew she wouldn’t recommend it to me if she didn’t think I could do it.

Guess what? I can do it. And so can you.

If you think for one second that the intimidation factor of entering a Crossfit gym is even CLOSE to what you have experienced as the parent/caregiver of a special needs child, you are wrong. Nope. Not even close. Remember that deer in the headlights, stomach sinking feeling when you found out that your child was different? That you were now in charge of someone who needed help with ADHD/Autism/PVL/CP/a trach tube/Extra Chromosomes/Not Enough Chromosomes/fill in the blank with your chosen term here?

I walked in. I felt the fear, the intimidation and I did it. I LOVED it. And believe me, if I can do it, anyone can.

I can pick up my son. I have to keep going, though, and one day I will lose this game, because he will simply outgrow me. But not yet. Not yet.

But there is that fear of getting hurt. Of having a setback. And when you are on the path and you’ve got everything going and things are humming along, setbacks suck.

I hurt my knee yesterday. I have class tomorrow. I REALLY want to go but… my knee.

It makes me think of when my son has a setback. Does your child have them too? Does your child forget what they have learned over a school break? Does your child start to speak and then stop, having to relearn how to say things over and over again? Do they totally get a concept one day, only to lose it on another? Or can they do certain physical movements sometimes and not at all at other times? Eat without choking on Monday but choke on everything on Thursday?

What do we do when this happens? Do we quit? Nah. WE DON’T HAVE THAT OPTION. We take a break, we rest, we regroup. And we try again. And again. Because this is our CHILD that we are talking about. There is no choice but to keep going.

So why do we give up on ourselves?

Why do we stop taking care of ourselves?

People are scared to get hurt. Look, no one likes to get hurt. I hate it. I am limping around the house, using ice and ibuprofen and a knee brace. I am in pain, stiff and irritable. But, what if last fall, I never started from fear of the unknown? Fear of getting hurt?

Setbacks suck. But you know what sucks more? Not coming back from a setback. This goes for your health, your emotional state, your monetary situation, your relationships woes, everything.

Without a doubt, YOU WILL HAVE SETBACKS IN YOUR LIFE. And, of course, your child with special needs will as well. This is unavoidable. But you know what IS avoidable? A setback becoming a downfall.

Tomorrow I will limp into Crossfit. And I will do what will probably be a very challenging all upper body workout. As my lower body heals.

Rest. Regroup. Return. Someone incredibly important is counting on you.

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!