Author: Mara

You have a child with special needs. Things have settled down. You are getting into your groove. And you are starting to think – I want to start a project. Or, I want to work. Or, I want to do some of the things that I used to do that made me happy, like crochet a blanket or write a computer program or draw or paint or whatever it is that you do. But things are different now. Your whole life is different. How is this going to work when your attention is in demand so much and so often?

This is the spot that I was in last fall, when I decided that I wanted to start this blog. And, today, more than ten weeks ahead of schedule, I am writing this – my ONE HUNDREDTH BLOG POST. As I reflect back on how this came to fruition, I see the similarities and differences in how this happened compared to how it would have gone in the past.

I had wanted to start a blog for YEARS. But I kept putting it off because of one thing – technology. I have always been behind the technology curve. It wasn’t, and isn’t, my strong suit. But writing has always come easy to me. In fact, it only takes me maybe 10-20 minutes to write a blog post. Publishing it and posting it on social media can take up to an hour sometimes. And, if I decide that I want to change the color of the background of my blog? That could take me HOURS to figure out.

But then, a MUCH YOUNGER former colleague started a lifestyle blog. And I looked at it and I thought COME ON!!! YOU CAN DO THIS TOO!!! IF SHE CAN FIGURE IT OUT, YOU CAN FIGURE IT OUT. The blog was fabulous, because, of course, she is fabulous.

So, I did it. I began.

I don’t have Microsoft Word on my computer. So everything that I have written, that’s right, 100 posts, have all been on WORDPAD. Which means there is no spell check. Which means, if I don’t catch the error, the error will appear on the blog. Why haven’t I gotten Word? Because then I would have to figure out how to install it. So, I keep avoiding it.

My blog isn’t configured the way I want it to be. It is not as user friendly as it could be. It is not easy to see that there are 100 posts. I need to change the format. But this requires endless hours of research. And so, for now, it remains as is.

It is NOT perfect. BUT I DID IT!!!

I wanted to support other caregivers. I wanted to let them know that they are not alone on a journey that feels deeply personal and specific to them and LONELY.

So, how did I make this happen while living the special needs life?

If you think back to before you were a special needs caregiver, when you started a project you may have structured it during “normal” hours. You may have given yourself a “reasonable” amount of time to get the project done. You may have structured time periods into your day for undisturbed work time. It might have had a few bumps in the road but mostly have gone smoothly. This was how I used to do things.

Let me tell you right now, that this journey did NOT look anything like what I described above.

My husband was an incredible support as I researched how to begin. This included looking at books written for dummies and idiots, asking friends and researching online. And, when all else failed (and it often did), my husband would look at YouTube and tell me how other people were doing what I wanted to do. Except, if the YouTube post was a certain age or older, the technology that they used was obsolete. Or updated. Or different. Or something.

It was incredibly frustrating. As I continued to plug away at figuring out just how to START, there were many moments of self-doubt, something that I had not struggled with in the past. But I hadn’t slept through the night more than a handful of times in years, I was endlessly distracted by being a special needs caregiver, plus a mother to typical children, plus my husband was sick, plus my mother had passed away from Alzheimer’s disease in 2014, plus at one point we were homeless, plus, plus, plus… I wasn’t the same person that I used to be.

Guess what? Once again, like when you are living the special needs life and get thrown a curve ball, I established my new normal. Again.

Where before I would sit down to a project and get it done in what I considered a reasonable amount of time, now I had to do it in short blocks of time. Also, the amount of time allotted for something to get done needed to be longer. I needed to take into consideration that when I am writing or publishing or posting on social media that I may have to stop about every two to seven minutes and clap for SuperWhy. And, because my son loves repetition, I may have to literally do this TWO HUNDRED TIMES. For the exact same part of the show that my son loves to reset his tablet to (and how proud am I that my son can OPERATE his tablet? But that’s another post).

Work hours? There were a couple of months where my son woke up every single day at 2 AM. And he got me up. For the day. So after settling him in with some milk, guess what I was doing at 2:10 AM? That’s right. Writing. Worried about me being exhausted? I slept. At 1 PM, while he was at school. Too tired from the early start to work then.

I set myself a goal of 100 blog posts in one year. I figured that there would be times where I was on fire and would write every day. And that there would be other times where I couldn’t put a word on a page. I think my former self would have doubled that number. But that would have set my current self up to fail because now my life was structured differently and caregiving comes above all else. Don’t I sound like twins? When I post this, as you are reading this, my goal has been met. About ten weeks early. I set a goal that I could reach.

Where in my former way of life I would have sped balls to the wall toward my goal, in this incarnation of me, I would burn out so much faster. There is only so much of me available after my most important job, caring for my son and family. I need to budget what’s left of me so that I can sustain the project over time.

This has been an incredible learning experience for me. To know, firsthand, that we can reinvent ourselves at any age is incredibly empowering. I wanted to create a safe place for our community, the caregivers of those we love most in the world, to see themselves. To see that yes, what others are experiencing are specific to each situation, but there are also lots of similarities, especially in the caregiver experience.

We are not alone. We have each other.

I am honored every time you come to the blog, every time you read what I’ve posted, every time you engage in the ongoing conversation. Thank you so much for being here and doing this with me.

Here’s to the next hundred blog posts!

Coming soon: THE BOOK!!!!!!!!!!!! A book for the new special needs caregiver. Because no one handed me one when I first started on this path. I am hoping this will be the book that I wish someone had handed me.

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!

Especially if you are new to living the special needs life, you may be wondering if you have what it takes to be a special needs parent or caregiver. You may look at other people’s families and wonder if you have the ability to really DO THIS. Special needs parents are warriors. How can you be one too?

We aren’t born this way. Special needs parents are MADE. They say that we are strong. They say that WE are “special.” They say that we are exceptional. They are right. But we didn’t KNOW this about ourselves, until, well, we didn’t have a choice.

We are flexible, resilient, resolved, strong, loving, caring, knowledgeable fighters who protect those we love the most with a level of dedication that many can only dream of. We get knocked down, physically, emotionally, mentally and spiritually, over and over and over. The difference between us and them? We ALWAYS get back up. We HAVE to. Someone important is depending on us.

We go above and beyond what is required while always thinking of how, in our own opinions, we didn’t measure up to our own expectations and we should have done better.

We get to a level of exhaustion that you don’t even know exists.

When we finally have mastery of our situation, I can almost guarantee, the situation will change and morph in a way we could never predict. And then we establish our new normal. And then we do it again. And again.

We LOVE on a level that many don’t aspire to.

It is the best and one of the toughest jobs in the world. It is 24/7/365 in a way that being a parent of a typical child just isn’t.

We are rockstars. We are warriors. We are always ready to fight for the win.

Whether we have slept or not. Whether we are motivated or not. Whether we haven’t had a break in years, or not.

This is not a gig for the faint of heart.

If you are wondering if you can do this, the answer is YES. It is a sign of strength and intelligence to question it – it’s a huge undertaking. But you can.

I am so proud of us. Whether you are just beginning your special needs life or have been in it for a while, you are on an incredible journey. You WILL succeed.

All you need is your incredible child and you. Dig down deep and love them with everything you have. I promise, the rest will fall into place.

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 other day I went to the doctor for an annoying chest cough that I’ve had for over a month that I just couldn’t seem to kick. The nurse and I were discussing the fact that I work out five days a week, one of them being with a trainer. She told me how she has wanted to lose some weight but that she just can’t seem to find the motivation to do it. I have been thinking about this.

Especially when living the special needs life, if you wait for motivation to strike, it may never happen.

This concept isn’t just for weight loss. It is for potty training your child who doesn’t understand the process. It’s for avoiding brushing their teeth because you get hurt in the struggle on a daily basis. It’s that doctor’s visit for your child that you keep postponing because you are dreading the visit and the meltdown it entails.

But it’s also for your own self care. Waiting for motivation to eat healthier? How about replacing your maternity clothes, even though your youngest child is four? Waiting for motivation to exercise?

Here’s the thing. Motivation is not a friend who comes over and knocks on your door and all you have to do is let them in. Sometimes motivation just doesn’t show up at all. But the difference between being a dreamer and being a doer, is showing up to what needs to be done, regardless of how you feel.

Think you can’t do this? You already do. If you have ever held a job, you showed up for work, motivated or not. If you ever attended school, same thing.

But just like the smell of coffee in the morning can motivate you to get out of bed sooner, you can build some motivation into your day to make it easier. Teachers do this all the time. They use sticker charts and individual and class rewards to help motivate their students. You can do this, too.

What helps you get going when you just aren’t feeling it? Here are some suggestions to kick start your thought process:

• shorten the task into smaller steps
• share the task with someone else
• reward yourself for a certain amount of times of trying, even if the goal hasn’t been reached (i.e. – you put your child on the potty five times in three days so you get Starbucks! Netflix! Whatever you decide!)
• Start where you are. Haven’t worked out in years? Decide that for the next week you will walk to the corner and back. That’s it. When you complete that add in two extra minutes a day. Build on this. It counts!
• Be careful who you compare yourself to. Sometimes when you look at someone who is deeply into their own process (marathon runner friend, we’re looking at you!), it can make you feel even LESS motivated. Use the people around you for inspiration but if this happens to you, find someone who is just a little ahead of where you are in whatever process you are trying to accomplish. Less intimidating.
• Forgive yourself for dropping the ball for whatever goal you wanted to accomplish. Now, pick the ball back up. TODAY. And keep going.

How do you handle things when you lack motivation? 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!

If you were going to hire someone to care for your child with special needs, what would you want them to be like? I know that some of the things that I would require include being healthy. I would want them to be well-rested. Able to think on their feet. Physically strong. Mentally, in a good, positive head space. Of course, I would also want them to be educated in my child’s diagnoses, able to be flexible as things change day-to-day (or sometimes, hourly) and able to go with the flow.

I also know that choosing a caregiver for my child with special needs is a daunting task. I can’t just leave my child with an average person. It isn’t the same as finding childcare for a typical child. If I needed to find a caregiver, I would be super picky. I would have very high expectations.

So, why then, do we treat ourselves, as our children’s primary caregivers, as an afterthought?

When living the special needs life, it is a natural choice to put ourselves, the caregivers, last. Because it is all about our amazing, wonderful children. It makes perfect sense, at least on the surface, that we come last. But this brings me to a highly clarifying question – in the current state that you are in, would you hire you?

Are you keeping yourself in good physical condition? Are you getting enough rest? Are your needs being met so that you can have a positive outlook? Is your cup filled and overflowing so that you can give without running dry? Or are you, in your current state, looking like an afterthought?

NO ONE, INCLUDING YOU, SHOULD TREAT YOU AS AN AFTERTHOUGHT.

YOUR CHILD DESERVES A BETTER CAREGIVER THAN ONE WHO IS AN AFTERTHOUGHT.

It is counter intuitive, isn’t it? Your intuition says to give and give and give. Don’t take time away from your child for yourself. They come first.

What if I told you that by taking time away from being a caregiver to care for yourself, you are actually putting your child first?

Why? Because by taking care of yourself, you are giving your child the best caregiver they can possibly have – it’s the best version of you. Guilt be gone. It’s for you, but it’s also for them.

When you get caught up in everything, when you are exhausted, when you have created your new normal again and again, take time for a reality check. Ask yourself – would I hire myself to do this job in my current state? If your answer is no, it’s time for some self care.

You are not an afterthought. Treat yourself accordingly.

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 man pays. The woman does the housework. He works. She cleans the house and takes care of the kids. He leads the family. She follows.

Sounds like a 1950’s television show, doesn’t it?

NO ONE lives like this anymore, right? You’d be surprised.

You know who seems to have a hard time with moving past these society-inflicted gender roles? Men.

Over and over, I find that men feel inadequate, feel “less of a man,” if they can’t afford to pay. Or, if they are a stay-at-home Dad. Or, maybe they DON’T feel inadequate, but others tease them about it. For not being “manly” enough. Men are having a hard time.

They are STRUGGLING.

Struggling with being who society has told them they should be, struggling with the assigned gender roles that they have been indoctrinated into from birth, struggling to live their special needs life fulfilling the role that their CHILD needs them to fill the most (whatever that is) while balancing all the rest.

Think about it.

What if your child’s needs indicate that the best situation for them is a stay-at-home Dad? What if Mom makes more money? What if Dad is better at juggling the responsibilities of the physical, therapy, educational, emotional needs of raising a child with special needs? How can we assimilate those needs into the stereotypical cultural expectations of men?

We can’t.

And so I encourage you, once again, to create your new normal. If you are living the special needs life you know exactly what I’m talking about. Let go of rules that you didn’t make that don’t serve you or your situation. The last vestiges of what it means to “be a man,” are waiting for your ceremonial bra-burning moment. Are you ready to light it on fire?

Burn, baby. Burn.

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 had a bad day today.

My son, Kai, had a seizure. Actually, it was a small series of them. This was our second time with this experience and this time was worse than last time.

Last time, he zoned out and stared at the ceiling and then eventually passed out. This time he vomited. I thought it was due to a bad combo of foods so didn’t worry about it and put him in the bath. When he stepped out of the tub, he zoned out and pitched head first toward the wall. I caught him before his head made contact and helped him up while his body started to vibrate. His eyes looked vacant and his pupils grew steadily larger. I helped him to the bedroom, where his dad and I laid him on the bed. He came around briefly and then started up again. We quickly got him dressed, into the truck and to the hospital.

Kai has eight diagnoses. One of them is PVL (periventricular leukomalacia), which is damaged white brain matter. It is rare and often misdiagnosed as autism (which is another of his diagnoses). PVL is linked to cerebral palsy, which Kai doesn’t have, and to seizures, which he didn’t have until a couple of months ago. The hospital initially thought his first seizure was due to a quickly spiking fever, but I think that they are wrong. We have an appointment in the next couple of weeks, on my birthday (the first available date), with the neurologist and I anticipate that we will discover through an EEG that this will be ongoing. I don’t know this for certain but its what my gut is telling me.

This sucks.

EIGHT diagnoses. And just when I feel like I have a handle on everything, there is ALWAYS a curve ball thrown at me. I often say that if God doesn’t give you more than you can handle, God must think awfully high of me.

I try to always remain positive when it comes to Kai and living the special needs life. And I will be OK. So will Kai. But, right this second, I am…

I have no words.

This gig, 24/7/365, is rough. If I told you it wasn’t, that you wouldn’t have moments like this, where you felt like the weight on your heart is unbearably heavy, I would be misleading you.

But, this is what you, and I, need to remember. This moment is not forever. This feeling is not forever. I feel it. I feel it hard. It hurts. It’s bad.

These little earthquakes can rock you to your foundation.

But, eventually, the shaking stops. The situation may force you to relearn your special needs life. To learn your new normal, YET AGAIN.

Remember when you did that before? You did it, didn’t you? So if you did it, you can do it again. And again. We sure as heck don’t want to, but ultimately, we need to keep our eyes on the prize.

My Kai is a sweet, sweet prize.

I had a bad day today. But this is still the greatest job in the world.

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!

Sometimes, especially in the summertime, when the kids are off from school, I feel like I just can’t get anything done. I know that parents of typical children often say this. They feel exhausted and constantly interrupted. I know we have this in common. But I think that our experiences are a bit different.

For example, I am a blog writer, but I am also trying to finish my first draft of a book (coming soon for special needs caregivers!). I know what I want to say but I get off track when my son Kai, who is seven years old and has eight different developmental/neurological diagnoses, interrupts me every 30 seconds. This is so he can pull my hands off of the keyboard and put them in the raised position he prefers. So that when he deems the time is right, he can push hard on one of my hands forcing me to clap. Repeatedly. For SuperWhy. And then, since it’s on his tablet, he moves the video back to where we just were and we do it again. And again.

Sometimes only twenty times. At other times, three to five hundred times.

By the end of this, my hands hurt. I know that my son is making contact with me and playing with me and enjoying this time spent together. And I WANT to have this connection with him. So most of the time, I do it with him. But my work gets pushed aside and when I come back to it, it doesn’t always have the same flow. Or the same content. Or heck, any content. What was I saying?

I try to write while my son rocks wildly in his dad’s rocker recliner, which he has broken and my husband has fixed at least ten times. Sometimes he rocks so hard, he almost goes airborne. At our last house there was a dent in the wall where Kai had repeatedly slammed the chair into it. He also wildly laughs and sings or babbles to himself. And I try to block it out and write.

I also try to write when Kai wants me to get up and take him to the bedroom, where he wants me to stay… to do nothing. He just likes that I’m there. So I will try to let him in and then return to the living room to write. But then he comes and gets me. And, of course, if I bring the laptop into the bedroom to write, he wants to leave with me to go to the kitchen. Or roll around on the bed where I’m working. Or climb on top of me and push the computer to the side.

Since school has let out, Kai has gotten more physically attached to me than even his usual, which is a lot. Sometimes I feel like I have a third leg. Or arm. Or torso. This often appears when I am trying to answer a message pertaining to the blog or the book.

You can count on Kai to be quiet for a couple of hours until I need to have a business conversation by phone. The SECOND this happens, he will cry and no one will be able to figure out why. We can ask but 99% of the time, he won’t answer.

The other day I was working and Kai pulled me out of my chair to go to the kitchen cabinet. For the hundredth time, I tried to explain to him that there was nothing in the cabinet for him. It’s the one where we keep spices, medicines and, oddly, zip lock bags and wax paper and foil and stuff like that. But he insisted that I once again open it and show him the contents. And he kept gesturing to the top shelf. Mommy finally figured out, after MONTHS of repeating this activity, that Kai was seeing a teeny, tiny picture of chocolate chip cookies on the box of waxed paper. He was trying to tell me that he wanted chocolate chip cookies. So I went to the other cabinet and got him some, which, I rightly predicted, he just crumbled up into sawdust on the table. Which is why we usually eat vanilla wafers. They are harder to crumble. I later returned to the cabinet and turned the box of waxed paper so that the teeny, tiny picture of chocolate chip cookies no longer shows. I am proud of myself that it occurred to me to do this.

I was literally just interrupted before I started this sentence, but by my nine year-old, typical daughter. She wanted to jump into my lap. So, of course, I put the laptop down and she did. What followed was a very detailed conversation about spaghetti. How we like it on a plate. In a bowl. WIth cheese and sauce. Twirled on a fork. In our tummies. But then, I said, hey, let me finish this article and she said, OK, Mommy! And then kissed me and jumped up. This is how I imagine the interruptions might be with an all-typical household.

I am trying to focus. But she just left and now Kai is clapping and tapping and stimming and making sounds.

And the adult kids just walked in. And the baby granddaughter (I married a man with three kids; we have a blended family).

When I find that the interruptions begin to outweigh what I am producing, it’s time to take a break.

But I try to remember the reason why I am able to have all of these interruptions. I have a wonderful, amazing son who happens to have special needs. And an incredible, loving family who are all typical.

I am blessed. And I need to remember that as a caregiver, THIS is my job. Everything else comes second.

I was going to say something else but was just informed that the spaghetti is ready. I have no idea what I was about to say. So, I guess it’s time to stop working and eat with my family.

Wait! I was going to say… yeah, never mind. It’s gone.

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!

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!