Month: June 2019

A friend with a child with physical disabilities was in a water park. The child has special socks to keep the skin on her feet from being damaged, which can take months to heal. The 16 year-old lifeguard told her she had to have her child take the socks off, as socks were not allowed in the water park area.

My family was at a splash pad and my son, who is special needs and has eight different diagnoses, wanted to go down the water slide. But because at that point he couldn’t right himself physically at the bottom, so risked drowning, he needed to go down on my lap. The lifeguards told me that we couldn’t do it because policy stated that using the slide is only for one person at a time.

Do these scenarios sound familiar? Especially during the summertime, we special needs caregivers run into all kinds of issues in public spaces. These places have general public policies. Their young workers are told to enforce the policies. So they do. But they don’t know the law. In fact, often management doesn’t know the law for special needs individuals, either. They are legally required to have trainings on this, but lots of times, these things are very brief during trainings. They are quickly covered and moved past.

This is why YOU, as a special needs caregiver, need to know your rights.

You don’t even really need to know the law. I have had wonderful, lengthy debates with some of these types of places where I just kept stating that they were out of compliance with “special needs law,” and leaving themselves open for “legal action,” because of it. I didn’t even need to state what the law was. The fear that appears in their eyes when you mention special needs and legal action has often been immediate and impressive.

But, since we’re here, we might as well know the actual law. I promise you, I’ll keep it short and sweet.

By the way, I highly recommend that you not even bother having this conversation with the 16 year-old employees (not knocking them, LOVE them, but this is not their forte). When told that you can’t do what you need to do for your child by the youngins, explain briefly but then just ask for management. That is who you need to address and it’s just faster that way. Be sure you tell the young employee that you do not intend to get them in trouble so they don’t have to freak out about losing their job because they did what they were told.

Here’s a link that explains which laws do what:

https://www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/at-a-glance-which-laws-do-what

For public spaces, you want to know about the ADA (Americans With Disabilities Act). If you scroll down and click on the link for ADA, it will take you to what this law covers in public spaces. What you want to remember is the term “reasonable accomodation.” So any time you are in a public space and need to have the rules altered for your child to participate, you can use this phrase, “Through the ADA, your organization is legally required to make reasonable accomodations for anyone with a disability. In order to participate, my child needs you to allow [fill in what you need]. If you can’t give my child a reasonable accomodation in this situation, you are out of compliance with ADA. If you don’t like the accomodation I am asking for, what do you suggest we do instead? Because my child has the legal right to be here and use these facilities.”

You will see backpedaling and scrambling like you have never seen before.

If for some reason you don’t get what you need, please refer to the link above, which also explains how to file a complaint on that business.

If you have trouble remembering this stuff because, I don’t know, you haven’t SLEPT in years as a caregiver, take five minutes to print out this resource and tuck it into your wallet or purse. Then you don’t even have to remember, you can just pull it out to refer to or hand to them or whatever.

Problem solved.

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!

Walking the special needs caregiver path can challenge even the people with the strongest sense of self to remain true to their core values, beliefs and boundaries. Hopefully, before you became a special needs caregiver, you had time to establish a sense of who you are, what you are willing to do and not do and who you want to be.

But, who are we kidding? Can we even remember that far back? You know, before the sleep deprivation, the adaptive way of life that we now live, the challenges?

Surprise… you CAN remember.

Maybe not right this second. Maybe if I ask you to recall who you were and what your boundaries were before living the special needs life, you won’t be able to give me a description or a list. But, if you come across a situation that rubs you the wrong way, your red flags still go up, don’t they?

Your sense of self, your sense of YOU, your boundaries… they are still in there.

I remember going to an ABA therapy center to investigate whether or not it would be a good path for my son to pursue. To this day I can’t say if ABA would have been valuable because the woman who owned the center sent up so many red flags for me it was like Sheldon from The Big Bang Theory was doing a special episode of “Fun With Flags,” just for me. The first thing she wanted to teach my son was how to curb his behavior to blend in with typical children if they are all in the same room together. I have a strong belief that my son should be able to be who he is. Why in the world would I want such a thing? Additionally, the thought that he could blend in when he is low-functioning and would maybe not get the assistance and understanding he needs terrifies me. And, when I tried to explain this to the woman, she vehemently disagreed with me, saying this is what MUST happen.

No, honey, what MUST happen is that we leave… now.

But maybe your belief system is different than mine. Maybe you want your child to blend in. Maybe this woman’s ABA therapy center would be perfect for your child.

I have to honor that. And so should you.

We all have these red flags that go up when a situation for our child doesn’t feel right. We also have a sense of joy, elation or at the very least a connection when a situation for our child does feel right. And these reactions are connected to your core values, your beliefs, your sense of self.

But sometimes we don’t listen when the flags go up. We know that we should but sometimes a situation seems like a dare-to-be-great one… if only. If you can say a situation for your child (or yourself) is amazing, if only… is the situation really amazing? Or is what is amazing you your vision in your head?

And then we stay too long with the vision instead of the reality when it’s time to go. Has this and does this continue to happen to me, for myself and with my son? GUILTY. Absolutely.

Want examples? How about when you know your child needs a certain kind of therapy but its just not working with that particular therapist? But changing is a huge hassle, you are exhausted and maybe, just maybe, if you keep it up, things will improve. Even though all of your red flags are up because the situation is just not right. Or, you have set a bathtime sequence for your child but no matter how many times you follow it, bathtime is a disaster. You want to go back to wipe downs but EVERYONE (spouse, therapist, teacher) is telling you that THIS is what needs to happen. Your red flags are up – you know that for you and your child its not happening right now, but you push on, against your better judgment, your boundaries, your knowledge of what works for you and your child and what just doesn’t.

LISTEN to the red flags. LISTEN to your inner voice. This is your TRUE self – the one who doesn’t want to, after a hard day at work, all of the after school stuff, dinner, laundry and goodness knows what else – fight a battle over a bath. Deep inside if you know that the bath sequence is not a priority for you in your role as a caregiver, FOLLOW THAT KNOWLEDGE. And when the school asks why you are not following the bath sequence (or toileting, hand washing, whatever), TELL THEM THE TRUTH. It’s not that you don’t want your child to be able to do it. It’s that there is only so much of you to give and right now you want to give in a different area instead of banging your head against the wall when your child is not ready to relinquish bathtime stubborness or fear of water or whatever it is that is making bathtime a living hell.

This DOES NOT make you a quitter or a lousy special needs parent. It makes you human.

Who are you? What is important for you and your child on your special needs caregiver journey? And what can you let go of, at least for now?

The only person who knows this information is you. Listen for the red flags. They will help guide you to be your authentic self as a caregiver and just as a person. And then set the boundaries. If other people don’t like it… well… we don’t have time to worry about that. We have to look out for number one – our children. And then, there’s us. We need to take care of us, too.

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!

This evening a friend approached me and let me know that he has a son that was born with special needs. Another friend recently asked for my input because her son was recently diagnosed with Autism and she was attending her first ARD at school. Still another new friend recently shared with me her journey as she has a special needs son who is now an adult and low-functioning, like my seven year-old son. It seems like everywhere I turn, I meet people who are special needs caregivers or who know people who are caregivers.

In the media, there is an endless amount of articles and posts about the ever-growing special needs population. In public, we see more and more people with special needs out and about.

So what’s going on?

The numbers are skyrocketing.

So, because the numbers are skyrocketing, you think that more and more people are being born with disabilities, don’t you?

Here’s a shocker – this isn’t necessarily true.

Let’s talk about Autism. Not because all of us are caregivers of Autistic children, but because this is one diagnosis that is all over the news and social media all of the time. Also, it’s a popular one that most of us have heard of as opposed to an obscure one that we can’t relate to (i.e. – my kid has periventricular leukomalacia, also known as… WHAT???).

Here is an article posted by the CDC (Centers for Disease Control and Prevention). The fact that Autism is not a disease will not affect my feelings about the source of this article (please pick up on sarcasm here):

https://www.cdc.gov/ncbddd/autism/data.html

I want to draw your attention in the article to the title of the chart. The title is IDENTIFIED PREVALENCE OF AUTISM SPECTRUM DISORDER. Take note of the word IDENTIFIED. Remember this because I am going to come back to it in a minute.

It is now 2019. In the 1960s, the culture of special needs was wildly different than it is today. Having a child with special needs was considered shameful. If you gave birth to a child like this, they were called names like retarded, stupid, defective. There was no place for them in the public school system. You either kept them home, hidden away from others to avoid the shame, or you institutionalized them. People made fun of the family with the “retard,” (yes, I want to cry just writing this). This wasn’t so long ago. At this time there was NO GENERALIZED SCREENING for Autism.

In fact, according to this article below, the federal government didn’t make Autism a special education category until 1991. And it wasn’t until then that “public schools began identifying children on the spectrum and offering them special services,” (It is important to note that doctors are the ones diagnosing, but even they have only been doing so for a short few decades. Their tests are improving as well). Check out the article:

https://www.parents.com/health/autism/the-history-of-autism/

Since I have no shame in getting older, I am happy to date myself by letting you know that 1991 was the year that I graduated high school. This means that NONE of my peers who today would be considered on the Autism spectrum were screened, diagnosed and educated properly. Because it simply wasn’t being done.

Think of the thousands of children that grew up into adults that suffered from lack of acceptance, lack of diagnosis and lack of educational course of action. But there is one more thing that there was a lack of.

These people weren’t counted. In other words, they weren’t IDENTIFIED.

If you don’t have a diagnosis, you can’t be counted as someone in our society that has a disability. Remember when I told you to remember the word IDENTIFIED in the title, IDENTIFIED PREVALENCE OF AUTISM SPECTRUM DISORDER? If you go back and look at the chart in the CDC article, they were tracking IDENTIFIED people diagnosed with autism. Having worked in public education for 15 years I can tell you that when the public schools are handed new tasks and are directed to develop screenings, it takes a good ten years or longer to refine them before they are really good. So since they began in 1991 to service these people, the screenings were probably still being refined up to 20 years later and still to this day. And as the screenings improve and the nuances that reflect an entire gamut of different ways Autism manifests itself in the individual are being found through testing, more and more people are being identified as Autistic.

Does this mean we have an epidemic? In my opinion, no.

At the top of the chart it says that 1/150 children in the year 2000 were DIAGNOSED with Autism. At the bottom of the chart it says that 1/59 children in the year 2014 were DIAGNOSED with Autism. It DOES NOT SAY that more children HAVE Autism.

Remember all of the people in history that weren’t counted? They EXISTED. They were in our society. And, if we had counted them, guess what? We would have discovered that these numbers that we are getting today, 1/59 (or whatever the current count is), have probably been what they are all throughout our history. Autistic folks have ALWAYS been there.

You know what hasn’t always been there? Our society’s willingness to see them, to honor them, to accept them, to educate them and to love them as worthy members.

I am so thankful that this is changing. If you missed my article on how this is the greatest time in history for your special needs child to be alive, check out the link to it, below:

This is the Greatest Time In History For Your Special Needs Child To Be Alive

So the next time you start hearing about the Autism epidemic, or the Special Needs epidemic, remember that it is highly unlikely that such an epidemic exists. But also, we should be so lucky to have more of the amazing children that we caregivers are raising. Because you, of all people, know how incredible they are.

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!

Yesterday I went to observe the Tae Kwon Do black belt test of a dear friend. If you have never seen this type of event before, it was a brutal physical, mental and emotional five hour test that pushes the individual to the end of their comfort zone and beyond. But it is also filled with symbolism. Included were many symbolic items of the journey that the candidate has taken, including the belts of all the ranks they have held before. The belts also have stripes on them to show the levels obtained between tests. There were objects that sparked recollection of past achievements, past failures and past conversations. Because, obviously, my friend didn’t just get up one day and decide to take this test. You can’t go from knowing nothing to taking the black belt test in just one day. It is the evolution, the commitment, the mistakes and the successes, compiled over time, that make the candidate into the warrior.

And it got me thinking – when was the last time you reflected on how far you have come as a caregiver?

We all sure know what we suck at. We will be the first to tell you how we could have done better for our children with special needs. That we could have, would have, should have handled something differently. But when was the last time you thought about the triumphs?

I’m not asking about your child’s triumphs. We think about and talk about that all the time. We take pictures and keep mementos. I bet you have a gazillion pictures of the first time your child achieved things. It is the most thrilling thing in the world when your child, after hundreds of repetitions and after no one thought they would or could, picked up cup for the first time at the age of 8. Or sat on the potty and peed into the air at the age of 7. Or said, “Hi,” for the first time at the age of 22. Or sat through dinner without getting up a million times because of ADHD at any age. We remember and think about and celebrate these achievements. We look back at our Facebook posts from 6 years ago and say, “Remember when our child couldn’t do that?” And now they can.

But, unlike in karate, where you can look at tangible examples of where you have been to remind you how far you have come and unlike your child’s journey that we document with pictures and memories, we as caregivers have a tendency to have very little documentation. I do not have a picture of myself in the kitchen the day that I saved my son’s life for the first time when he was choking by using the hook method. I also don’t have a picture of myself, fist pumping the air, on the last day I ever had to do this after an ENTIRE YEAR of doing it at every meal, every single day.

But, look how far I came. An entire year. Every meal. Every day. At first I did it in tremendous fear. By the end of the year, he would be choking hard and I would just pop my finger into his throat and clear it out, not even breaking conversation.

I don’t think about it because I do what I have to do when I have to do it. And so do you. But we need to think about it. We need to reflect. Because, you know what? You are improving with this gig over time.

Think about it. Wherever you are on the journey, thirty years or three weeks into it, you are more accomplished, more capable and better at caregiving than you were before. But no one is going to lay out all of our belt levels for us to see that, yes, over time we have developed into the warriors that we are.

So, you have become a warrior but since no one is handing you the black belt, the medal, the award, the reward, you may not even realize it.

But I know you see your mistakes. When I talk to caregivers, the same thing comes up over and over – I wish I was better for my child. I wish I didn’t make the mistakes that I make. I have fears that I won’t be enough. I worry that I won’t be able to give them what they need.

Here’s the thing. My friend, the one who took the test? It wasn’t a straight path to get there. He stopped and restarted. He changed his mind, then recommitted. He made mistakes. He got hurt emotionally. He got injured physically. He dropped the ball. He picked it back up again. And all of that led to this one culminating moment where he passed the test.

Not unlike our journey, is it? Except we don’t have a culminating testing moment. Because that is every minute of every day.

So, while you are beating yourself up over what you did wrong and why you could and should be better, please take a moment to lay out your own mementos in your mind of your journey. Not your child’s journey, YOUR journey. Where did you start? What have you overcome? Where did you deserve a medal? Where did you level up as a caregiver?

Because you did. You started. You persisted. You overcame. You are here. And I am so proud of 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!

*Celebrating being 90 articles strong today!

Our family was recently staying at a hotel that had a swimming pool. My nine year-old daughter and seven year-old son love to swim and were so happy to be in the water. But Kai, our son, especially loves it. Kai has special needs, eight different diagnoses and is obviously atypical when you see him. He was wearing a life jacket, unlike his similar age peers. And, for the first time ever, he was going in and out of the pool by himself. He doesn’t need to be held anymore or shadowed as closely. Even low-functioning special needs children grow up, huh?

Since I didn’t have to be in the pool with him, I was seated at a table nearby with my husband. Of course, we were watching them both closely. And along came Julia.

Julia is my new friend. She is bright and brilliant and quirky and creative and just the thought of our meeting makes me smile. And even though I live in Texas and Julia lives in the Midwest, we became fast friends. We recognized almost immediately that we were kindred spirits.

Julia and I met because of Kai.

Although, I think that it’s possible we might have met anyway, as she is super friendly, Julia’s son, Nick, is 28, has special needs and is low-functioning. She picked us out right away. It’s like finding a relative you didn’t know that you have. She saw her experience in ours and after a couple of minutes, I saw mine in hers (Nick wasn’t there but his gorgeous picture was admired by all).

Julia and I have similar lives. This is the life of the special needs caregiver. Although our children with special needs may be VASTLY different, our paths, as the caregivers, are surprisingly similar. We understand each other on a deep level. We can say things to each other that others won’t understand. We can laugh about disgusting things that happen at 2AM (and often, at 2PM).

But I truly think, having spoken to hundreds of caregivers over time, that making connections between caregivers is easier when your child is low-functioning. Why? Because those families are easier to pick out of a crowd.

There is absolutely no doubt in anyone’s minds when they look at Kai that he is atypical. Not so for my friend’s high-functioning son with Asperger’s. He is often misjudged as hyper, deviant, a child who “needs a firm hand.” His parents often feel judged as inept instead of cheerfully greeted as kindreds.

So, while I often tell parents of high-functioning children with special needs how happy I am for them that their kids are high functioning, I feel that in this regard, I am blessed. My tribe can find me on sight. Often, I can find them. And making these connections is so vital, because caregiving can feel so isolating.

So I am thankful for Julia and all of the Julias that take the time to see us and connect with us and enhance our lives, whether for a moment, an hour or a lifetime.

Please, I know that you are exhausted and overwhelmed from being on call 24/7/365, but you need this. You need to make these connections. For your own support. Because if you have support, you’ll do the most important job in the world even better.

Especially if your child is high-functioning and so blends into the crowd, find your tribe. We are out there waiting to meet you. So many of us want to know you. We just can’t tell if you are one of us when your child presents as typical. So say hello. Go to the parent support groups. Find a Facebook group. Ask for referrals to meet other caregivers through your school, your social worker, your therapy center.

We are out here. We understand. My hand is reaching out toward 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!

We are on vacation, traveling by car back from Brooklyn to Texas. We are in Memphis, at a hotel and this morning at breakfast, my husband asked, “If you could change Kai to ‘normal,’ would you do it?”

Kai is seven years old and has eight different diagnoses. He presents as low-functioning autistic. But he also has PVL (periventricular leukomalacia) and Duplicate Chromosome 16. And delays in all areas. And more. He is still in diapers. He is getting big at 4’4 and 65 pounds.

It seems like a crazy question. Who wouldn’t want that for their child? And yet…

Kai is amazing, just the way he is. He lights up a room. He creates joy in a space that lacked it only a moment before he walked in. He is my greatest student and my greatest teacher.

I would miss him if he were to change.

But…

One day, we won’t be here to care for him. And wouldn’t his life be better if he were able to care for himself then?

But still…

Kai has not a care in the world. His needs are simple. He only wants to be loved and cared for. He wants his tablet and a sippy cup full of milk. He wants cookies. He wants to be in water, to swim, to take baths. He doesn’t care if he is invited to birthday parties and has no inkling of whether or not others are looking at him in public. He is so HAPPY. Pretty much every day. And that is a good life, better than a lot of lives of people that are intellectually more aware.

The truth is that having known Kai and being introduced to the most surprising, amazing journey of my life has changed me. I would miss who he is now tremendously. I don’t know if I could do it. Wave a magic wand and have Kai be… well, who? Not himself?

To me, it is unthinkable. And I am so surprised by that.

But I think that I would have to do it. Because one day I won’t be here. One day my husband won’t be here. And although I can put the necessary things in place to make sure as best as I can that he will be cared for, it won’t be me or my husband that cares for him for the second part of his life. And although Kai’s siblings are amazing and great with him, it is a tremendous responsibility. That they have accepting it gracefully, even though they never asked for it, warms my heart every single day.

I’d have to do it. So that Kai could care for himself when we are gone.

The thought makes me want to cry.

Because I have realized that, to me, he is perfect. I want exactly my Kai.

This is the one time I am grateful that I am absolutely useless at performing magic.

Would you wave a magic wand and make your child with special needs typical? 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!

Take a look at the meme above. I have seen different versions of it all over the internet so my guess is you may have seen it, too. As a caregiver of a special needs child, what do you think of it?

It annoys me.

I am about to speak specifically about ONLY my child. Please don’t become offended because you perceive that I am calling YOUR child weird or odd. I am not.

My son, Kai, is seven years old and has about 8 different diagnoses. Developmentally, depending on what you are measuring, he is somewhere between 20-36 months old. But he is the size of a robust seven year-old. He is very strong, about 4’4 and weighs about 65 pounds.

Kai stims. He used to slap himself in the head. Then, after an incident when he was about two years old at a daycare where another child choked him, he also added in throat-punching. He only punches himself, not other people. So, if Kai needs input (stimulation) or feels stressed or even just excited, he will sometimes, without warning, haul off and punch himself in the throat. Really hard. And sometimes there is a loud, popping kind of sound that accompanies the impact. He hits himself so hard that he often has a bruise. I have had doctors look in his throat and he is not hurting himself internally. But this is an ongoing behavior.

It is a very startling experience if you have no idea that it is coming. In fact, we are currently in New York on vacation (we live in Texas but I am a native New Yorker). And in a city where the cultural norm is that no one looks each other in the eye on the street, I have seen people stop short with wide eyes when passing us on the sidewalk. It is that startling.

It is WEIRD. It is ODD. It is DIFFERENT. It is STARTLING.

So, maybe your child with special needs blends into a crowd. But our child doesn’t.

Kai also rocks and spins and sings and makes sounds. He is learning to talk but is often unintelligible. When people see him, they immediately know that he is OTHER than them.

The words weird and odd could be used as synonyms for different, except I think that they have a slightly more negative connotation. Still, in our case, you could definitely use these words to describe Kai.

It doesn’t make him any less amazing. He is smart, beautiful, joyful, a problem solver and brings happiness to everyone around him. His Dad and I believe that this is his purpose in life – he is a joy giver.

But to deny the fact that he appears weird or odd is to deny the feelings of those that first meet him. A lot of people have a shocked initial reaction, especially with the throat punching. This popular meme invalidates the feelings of these people, in my opinion. So, instead of acknowledging their feelings and admitting that, yes, it IS in fact weird or odd, but inviting them to come a little closer to meet Kai and learn about him and our world, we are shutting them down. We are telling them not to feel what they are feeling.

I think this blocks them from moving past their feelings. And, in turn, doesn’t build the bridge that we need to create a world where weird and odd is OK. Because we are all different. Some just wear it on our sleeves more than others.

Again, I’m not calling your child weird, or odd. What I’m saying is that I find it weird, and well, odd, not to acknowledge what’s right there, in front of my face. And yours, when you meet my child.

So, come up and meet Kai. He may do something weird, or odd, but when you look past that, he is amazing and worth getting to know.

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!