Author: Mara

We were sitting at the dojo, watching our 9 year old daughter test for her green belt in Tae Kwon Do when we got the call. Our son had just had a seizure. He is seven and has special needs. He had never had a seizure before. He had been fine earlier that morning. We had dropped him off at our oldest daughter’s house so that our son-in-law could watch him while we went to the test. No sign of illness. He ate well. He was happy to go into their house and that was it. We went on our way.

I quickly made arrangements for our daughter to be cared for and my husband and I ran outside. We live in a small Texas town but since I’m from New York, running out into traffic to cross the street and get to our van was natural for me. Not so much for the folks driving, but I made it, as in a game of Frogger. We jumped into the car and my husband drove us the six or seven blocks to our son. We hit every light. Every car in front of us dragged. When we pulled into the driveway, I jumped out before the van stopped moving and ran through the front door. Our son was asleep on the couch. We found out that he had been watching his tablet, had looked up at the ceiling and his eyes had rolled back and he had begun shaking. Our son-in-law immediately called us. He said it lasted about 30 seconds. When we tried to wake our son and got no response, I picked him up (not an easy feat, he is 4’4 and weighs over 60 pounds) and carried him to the van. We buckled him in and I told my husband that I was driving. My husband handed me the keys and got in the back with our son. I backed out and floored it.

I drove 95 miles an hour to the emergency room which is usually a 20-30 minute drive away. On a country highway. The hazards were on, I leaned on the horn and I wove my way in and out of traffic like the cab drivers I used to sit behind in New York City. I went up the middle lane. I drove on the shoulder. And I drove like this right up to the door of the emergency room, where I threw the van into park and jumped out. There is a reason why my husband jokingly calls me Mara O. Andretti.

I picked up my still unconscious son and ran into the emergency room while my husband went to park the car. I announced myself to the woman at the desk by stating, “My son had a seizure, we need medical attention, NOW!” She, to her credit, immediately got up and went to get assistance. The door opened and three nurses were already there. They offered a wheelchair and assistance carrying my son. I declined and said, “Just point the way.” I carried him into the room we were assigned, set him, still unconscious, on the bed and it all began.

Because, if you are a special needs caregiver, you know what is about to happen, don’t you?

I started with the opening statement, “Our son has special needs.”

They came back with, “What is his diagnosis?”

And, if you are lucky, yours is short. Ours, however, is not. “The first is PVL.”

They said, “What’s that?”

I said, “Periventricular Leukomalacia.”

They said, “Huh?”

I said, “Right.”

I offered to spell it for them, for which the nurse taking it down was grateful. Then I explained that it was damaged white brain matter.

They said, “Is that it?”

I smirked. “No. He also has Duplicate Chromosome 16.”

She wrote it down.

“And autism.”

She glanced up at me and went back to her writing.

“And apraxia.”

“And Sensory Processing Disorder.”

“And coprophagia.”

“And delays in all developmental areas.”

The woman was scribbling away. I tried to recall if I was finished or not and damned myself once again for not having a copy of this in my wallet, as I do EVERY SINGLE TIME I find myself in this situation. Wouldn’t it be lovely to just hand her a copy? I think so too. Damn.

By this time my husband had entered the room, alarmed eyes searching out his son, his shining star, checking to see if he was OK. He was on the bed, still not conscious. We explained what we knew and the interventions began in earnest.

While he was still unconscious, they put his IV in. This was a good move on their part, a lot simpler. When he came to and my husband could see for himself that our son was OK, I asked him to go back and be with our daughter who was having a milestone event. And her parents ran out with no explanation. Such is the life of a special needs family (by the way, we explained later, and she was AWESOME about it, as usual, her only concern being her brother).

My son regained consciousness and, not surprisingly, couldn’t and/or wouldn’t follow their directions. I had to help. They wanted to look in his nose and I had to hold his head and force it since when others do it, he invariably escapes. They wanted to look in his throat. I have lots of practice at this. I slid my fingers into his mouth on the outside of his teeth and pushed down on his jaw, forcing his mouth open. Only, this time my angle is off because of the crowd of people and how I am standing. So my finger gets in the way and, of course, my son bites down. It hurts like hell until I get resituated. My fault. Bad angle. They checked his throat and my hand was freed.

They discover that my son has a fever of 102.9. And a bad ear infection. This morning, his ears were a normal color and his skin felt cool. It happened in the blink of an eye. After a fun event of getting my son in position for a chest x-ray, we discovered that his chest was clear. No flu, no strep. No evil childhood diseases like measles or chicken pox (yes, he is vaccinated, and, AS A SPECIAL NEEDS PARENT, I WOULD DO IT AGAIN, but that is another story for another day).

So the doctor thinks that the fast spike in fever caused the seizure.

He may be right.

But he may be wrong.

The doctor is an expert in what he knows. He knows general medicine. He knows emergency room situations. He has experience with children who have seizures because of fast rising temperatures.

I am an expert on my son. And, I have greater knowledge of Periventricular Leukomalacia than the doctor does, as evidenced when he heard the term and gave me the common deer in the headlights expression that means, ‘What the heck is that?’

So, what do I and my husband know that he doesn’t? That PVL is linked to cerebral palsy, and, yes, to seizures. That we have to watch him closely pretty much forever, because seizures could occur at any time. He hadn’t had one before today. And yes, it coincided with the quick rising fever. But this saga isn’t over yet.

Because, while we are grateful that our son got excellent care, quick intervention and medication to address the situation, we need to go back to the neurologist. Our son needs another EEG to determine if there is abnormal seizure activity occuring in his brain.

Has it begun, then? Or do we get a pass this time? The seizure definitely happened but what was the cause? Fever? Or PVL?

I call the pediatrician’s office right from his bedside to leave a message (it’s Saturday) explaining that I need a referral to a neurologist ASAP first thing Monday morning. After a snarky answering service rep doesn’t want to do her job and I put her in her place I Ieave a message that I know may never get there after our less than stellar interaction. I need a new neurologist because we moved last year and don’t have one near our new home.

And the beat goes on.

My husband returned, having dropped our daughter off with relatives. Our son has received his first round of antibiotics via IV and it is time to get him dressed and take him home. We have our instructions to stay up throughtout the night, making sure he has medication every three hours for the first 24 hours so there is no chance of a quick spiking fever returning, risking another seizure. If that’s what caused it. We are exhausted and beyond grateful that all we have to do is stay up on and off all night after this event.

We are hopeful that the seizure was caused by the fever and not the PVL. We will be GRATEFUL if this is the case. And if not, we will be GRATEFUL that we still have our son with us. Seizures or not.

It is just another day when you are living the special needs life.

When we are in public, sometimes if my son, who is seven and special needs, is sitting quietly, it may take a few minutes for others to realize he is different. But then he will start rocking or making one of his enthusiastic noises or throat punching and people will suddenly pick up on it. Often they look at him while trying not to let me or my husband see that they are looking. They try to figure him out. And frequently, they back away. You can see the fear in their eyes. They don’t know how to handle the situation. They don’t know if they should talk to us or not. They don’t want to say the wrong thing. They feel awkward.

But you know who doesn’t feel awkward? Their kids.

Neurotypical kids in public are fascinating when they see my son. They tend to openly stare. They watch him, trying to figure out what’s different. I have seen them tilt their heads to the side, studying him, wondering why he is in a stroller when he is obviously not a baby. Or why he is eating baby food out of a container with a spoon while I sometimes hold it so the container doesn’t slide and fall to the ground. Yet my son is often physically bigger than they are. The neurotypical kids are trying to reconcile what they see with what they know.

And they are not afraid to ask.

You want to see mortification? Watch a parent who is inexperienced with special needs kids react when their neurotypical kid comes up to me and asks, point blank, “Why is he DOING that?”

I absolutely LOVE IT when this happens.

Not because of the parent’s discomfort. I wouldn’t wish discomfort on anyone. But because there is no reason to be afraid. My son LOOKS DIFFERENT. It is natural to be curious about this. I WANT people to meet my son. To get over the fear of what is different.

The worst part is when the parent tries to shush their child and looks embarrassed. I always comfort them and say something like, “No, it is WONDERFUL that your child asked! My son looks different. How smart of your child to notice. Come meet him!” I explain to the child that my son has a special brain and so he does things a little differently than everyone else. And that, even though he is just learning to talk and won’t yet say so, he is happy to meet you.

The child then usually comes right over and looks my son over carefully. They sometimes sit down next to him and try to see what he is watching on his tablet. Occasionally, they attempt to hold his hand and smile at him.

And the parent usually holds onto that strained smile, like, if the floor would crack open and create a huge hole, they would jump in without hesitation, just for this to be over.

I understand the parent’s reactions, truly I do. But think about this – they are the models for the next generation who is learning how to respond when they see a special needs child. And they, most likely inadvertently, but still, are teaching them fear and discomfort.

So it falls to us, the special needs caregivers, to be the educators (yes, I know, you don’t have enough to do). Because every time we invite neurotypical children and their families to meet our child we teach them to overcome their fear. We teach them to accept differences. We teach them what love really means.

The next time you are in public and you see ANYONE (OK, not if it’s in a creepy way)eyeballing your child with interest, invite them to come in for a closer look. Teach them. Educate them. Because, one by one, you are changing the world for your child. And for you.

On this journey living the special needs life, you may have already discovered that it is worth your while to invest more in the people in your life than you did before. Not only close family and friends but also the incredible people that work with your child on a daily basis.

If you haven’t discovered the power of investing in people yet, or you are afraid to do so because people don’t seem to invest as much in you, a shift in thought and a reframing of how you look at investing in people may be in order.

Perhaps in the past you have invested some time in relationships with teachers, staff and doctors the way most people do. Maybe you thanked them for a job well done. Maybe you gave them a gift around the holidays. And, for most people, that is pretty much it. The same goes for family and friends. You may also have given a lot more than others have given to you and then felt short-changed when you didn’t receive with the intensity that you gave.

There is a trick to this investing in people. You must invest without expectations. This doesn’t mean that you will get nothing in return. It means that you cannot decide what the something in return will be. And this can be hard. You may feel as though you give and give and give and get nothing. But the best thing that you get will not come from them. Ultimately, it will come from you.

By letting the people around you, both personal and professional relationships, know how much you value them, you do both them and yourself (and your child with special needs) a service. First, you make the people around you feel valued. It is important when you tell people how much you value them that you only speak the truth. Find the reasons why these people are important to you (and if they are amazing, as many of them are, this should be easy to do). Then, here’s the part that most people don’t think to do – TELL THEM. You can tell them how amazing they are to their faces, write them a letter or a card or give them a gift, but LET THEM KNOW. When was the last time someone told you? Right. It’s been a long time, hasn’t it? Because PEOPLE DON’T THINK TO DO THIS. So, when you do it, you stand out. It’s special.

Second, the reward you receive in return comes back to you in many ways. Just telling other people that you value them creates feel-good energy in the air, which you will also feel. Also, people who like you tend to put forth more for you. Don’t you always give more to the people that you like? That make you feel good? Even if they are just more cheerful to see you than usual after you share how valuable you feel that they are, that in itself is a gift. Especially when you are having a hard time when living the special needs life.

Finally, your child with special needs reaps the benefits of positive, feel-good interactions that you have with teachers and caregivers. As a former teacher of fifteen years, I have seen over and over again the bonds that teachers and families have formed just from the families reaching out with positive things to say to the teachers.

Living the special needs life can be exhausting. It can leave you with little time or energy to be creative. Here are some simple examples of how you can invest in the people around you:

• Pull aside someone in your life and tell them something brief, like, “I just want to tell you how incredible you are with my child and how grateful I am that you are in our lives. You make such a difference to us.”
• Offer a small gift and say or write, “If I had a million dollars to give you it wouldn’t be nearly enough because you are worth so much more to us. Thank you for just being you.”
• Going to an ARD? Bring Hershey Kisses and Hugs and scatter them across the meeting table when you first get there. Tell the group, “We’ve brought you kisses and hugs to let you know how much you mean to us. We are so grateful for everything that you do!” Teachers LOVE chocolate at meetings – this is the best five bucks you can spend for a meeting!
• Tell the person’s manager or higher up how amazing they are, in writing. This takes all of five minutes in a quick e-mail. Write about a specific thing that this person did that you loved. And when you send it off, make sure that it is cc’d to the person that you wrote about.

There are so many other ways to show your appreciation on a regular basis – the above ideas will just get you started. Ultimately, doing something quick, easy and direct is probably your best bet, especially if you are exhausted and overwhelmed. Take the extra few minutes to do this. I promise you that your ROI – Return On Investment – will be worth it.

As a former teacher one of the things that I have heard over and over again is how intimidating it can be for parents to meet with teachers and school staff. I have also heard that these same parents can find doctor’s visits, therapy visits and pretty much any visit with knowledgeable professionals intimidating. It is even more true for parents whose first language is not English, as I heard many times when I taught Adult ESL classes. But, it seems, ALL parents have trepidations, fears, when it comes to these meetings.

You worry that you are not smart enough. You worry that you are not educated enough. You worry that you aren’t going to agree with what the ARD committee wants to do for your child’s IEP (Individualized Education Program). And you go into the room where the meeting is to be held and a whole bunch of “professionals” with official looking name badges on look up at YOU. And you worry that whatever it is that they are expecting, you won’t be able to meet their expectations.

These people will hand you a booklet with pages and pages of your “rights.” They will ask you to sign a paper that says that they gave them to you but they will spend little to no time explaining what your rights are. And then they will launch into a discussion of your child. And they will use educational jargon, endless acronyms and their format of discussion to get the job done and process what they need to legally so that your child’s IEP is updated to the standards that are required by law. Confused? Intimidated? Completely lost? You are not alone.

Having sat on both sides of the IEP table, as a parent and as a teacher, I want to share with you some valuable information that will get you through.

You WANT your ARD team to be well-informed, smart intellectuals – people who not only know the ins and outs of the laws and what services are available but how best to apply them to your child’s specific needs. Where it can begin to get intimidating is when these intellectual people forget their place in your world – which is to be a rich resource for you and your child. In a way that you can understand. So that you can apply the information that they give you.

If you feel that a team member is looking down upon you for being less knowledgeable or less educated, the problem is not you, it is THEM. It is THEIR JOB to make you feel comfortable, to translate educational jargon and acronyms and to ensure that you understand everything and are in agreement. If they are not giving you credit for your superior knowledge as the expert on your child, if they are making you feel dumb for asking questions or asking for clarification, they have moved from intellectual to INTELLECTUAL BULLY. And you have the right to put them in their place.

Please note that this right will not show up on your list of rights in the packet that you signed off that you received. It is your right nonetheless.

But before you put them in their place, please take the time to examine what you think their motivation is. I have sat in on HUNDREDS of ARDS. And rarely is there an intellectual in the group that is making you feel less than on purpose. I am not saying they don’t exist. I have met a couple. But most of the time, these folks really want what is best for your child. They just forget sometimes that parents don’t always understand the technical terms, the jargon, the acronyms.

So, please, please, please don’t hesitate to ask when you don’t understand something.

I have a Master’s Degree in education, 15 years of general education teaching experience, am certified in general education, special education and ESL and am what is called a highly qualified teacher. Ya’ll, sometimes I have no clue what they’re talking about.

If you think that it is a sign of weakness to ask for a definition, a clarification or to just straight up tell them that you have no idea what they are talking about, you are wrong. IT IS A SIGN OF STRENGTH TO ASK QUESTIONS TO GAIN UNDERSTANDING. IT IS ALSO A SIGN OF INTELLECTUAL INTELLIGENCE. I mean, come on! How are you ever gonna know unless you ask? This is not a moment where you should “fake it ’til you make it.” Your child’s future is at stake. Make sure that they take the time to explain themselves in a way that you can understand.

Recently, I was sitting at an ARD as a parent, discussing my son. Some of the team was present in the room, and, because I live out in the country, some were on speaker phone at another location. One of the “experts,” was trying to explain something to me about occupational therapy and my son. She used a term that I had never heard before. I asked for a definition. She said that it was exactly the same as another term that I did understand, a synonym. That didn’t sound right to me. I jotted down the word and made a face and showed it to another expert in the room I was sitting in. She Googled the term and turned her computer screen to face me. The “expert” was wrong about the definition of the term.

See, even “intellectuals” are not infallible. They, too, make mistakes.

Ask. Ask, ask, ask.

Going to the doctor? Doctors have a broad base knowledge of medicine, illnesses and disorders. But I’m telling you now, however much they know, they have no idea how your child’s diagnosis affects them as an individual. You know who knows this information? YOU. YOU are the expert in this. And, sometimes, your child may even have a diagnosis that the doctor has never heard of. This happens to us all the time. Periventricular leukomalacia, amongst other things. Anyone know what this is? Anyone? Yeah, most of the doctors we meet don’t know either. That’s OK. They soon look it up and figure it out. But they don’t always understand what our son needs. So sometimes we have to switch doctors until we find one that does. You can do this too. Keep switching until you find that one jewel. Yes, it’s a pain to keep switching but the reward of finding someone who understands is priceless.

Same thing with therapists. They have broad knowledge and experience in their field but they have NO IDEA how your individual child is affected by their diagnoses. YOU DO. You are PARTNERS in this endeavor. Many, many therapists understand this. If you happen to get one that doesn’t or doesn’t want to take the time to explain to you what the heck they are talking about, guess what? Say goodbye. You have the right to ask for someone else. This may or may not be in the handouts that tell you your rights but I’m telling you, you do.

It is not my intention to devalue the intellectuals that you are accessing for assistance for your child, yourself and your family. In fact, quite the opposite. What would we do without these people, these angels who often make our lives easier? Most of them are amazing.

Just remember – don’t fear the angels. They are your partners, not your superiors.

It is April and like your child who turned seven recently, my son is in the first grade. But, maybe unlike your child, my son has special needs. He attends an all special needs campus because he is low functioning.

While your child is finishing up the last 10-12 weeks of first grade mastering learning to read words with long vowels like “cake,” my son has only been able to eat cake for a couple of years without choking on it.

Your child can play on the playground largely unattended. My son still needs to be shadowed.

Your child can hold an entire conversation with you. You can discuss how his or her day was. My son has a special report that comes home with him that I created. I needed to create this report because without it, I had no idea what he did all day. My son has been in the “just beginning to talk,” stage for the last couple of years. When I ask how his day was, he smiles at me, takes me by the hand and then shoves my hand in the direction of the thing he wants me to get for him.

And yet…

We, as parents, have so much in common.

While you are proud of your child’s accomplishments, I am too. The actual accomplishments our children are achieving at this age, the same age, are vastly different, but the pride is the same.

As you watch your child sleep at night and admire how beautiful they are and think of who in the family they most resemble, I do, too.

When you are amazed when you see that your child is understanding ever more complex concepts, the same thing is happening for me.

We are not so different, you and I.

Our children may be having vastly different experiences, but some things are exactly the same.

Your child is finishing up the first grade in the next couple of months. They may have just mastered addition and writing complete paragraphs.

Guess what? My son put on his own shoes today for the first time.

And, for you and me, all is right in our world.

You are living the special needs life. And you have finally come to a place where you are getting the hang of it. You know your child. You can mostly predict what they will or won’t do. The sharp learning curve has eased some. You are starting to remember who YOU were (at least a little bit) before the big event that changed your life forever.

It’s starting to feel OK.

You have your people. You have your community. You have aligned school, doctors, therapy, alternative choices, outings, special foods, bath and bedtime rituals, different clothes and more.

And then… there’s the holdout person.

There’s someone who you thought was totally going to have your back as a special needs caregiver. But, they just… don’t. They can’t wrap their brain around it. They don’t understand. They are not bonding with your child. They are a step, or two or ten away and they keep themselves there. They are still in your life but being with them is a chore. They want to question every choice you make. Or, maybe, they don’t value your child with special needs as they would a typical child. Maybe they favor your other, typical children (or other typical children in your family).

This hurts. Why don’t they get it? Why can’t they step up for your child?

There are some people that have such a narrow-minded view of what they are OK with that they simply can’t step outside their own box. They can’t see how different can be beautiful. Or how the clear cut path isn’t the only path.

Have you tried over and over and over to make the connections for them? Is it not working? Do you feel like you are banging your head against the wall? Does it feel like you are carrying a weight around with you all the time? I bet that feeling of weight is heavy on your soul.

Put it down.

I know that it doesn’t feel like a choice to do this when the weight sits so heavy on your heart, but it is. You do NOT have to choose to continue to carry this pain around with you.

The problem is not your child. The problem is not you. The problem is them.

They don’t get it. And they are missing out on the joy of sharing your experience. Of sharing all that your child is and all that your child will be. Because they can’t get past all they think that your child is not. And all that your child won’t be.

And, ultimately, that is so sad for them.

Put it down.

You don’t have to do this in an angry way. Just… separate yourself. Take some time away. Even if it is a close family member and you need to get another family member who is understanding to help you, you can do this. And be open to the idea that at some time in the future they will see and be ready. It could happen.

By leaving the door open for them if they are ever ready to return and see what there really is to see in your child, instead of what they imagined could have been there, you are not burning a bridge.

But you are practicing self care and self preservation. We have NO TIME for people who are not on board. We have NO TIME for people who don’t understand after we have made reasonable efforts to educate. WE ARE SPECIAL NEEDS CAREGIVERS. And whether these people were friends, neighbors or close family members before that event that changed it all, they now come in a distant second, third or tenth to the most important person in your world. Your child with special needs. They also need to come after YOU on your list. We, who we always put last, need to be second.

Because if we don’t take care of ourselves properly, our child with special needs doesn’t get our best care. And that is a hard lesson to learn.

Some people won’t understand right now. They may never understand. It’s OK. Let them go.

We see TONS of videos these days showing incredible things that kids with special needs are doing. And I am so grateful that these images are out there because we NEED positive role models for ourselves and our children. But I also have been looking in the background of these videos. Have you?

Who do I see when I look in the background? I see YOU. The Mom. The Dad. The Grandparent. The Siblings. The Caregivers. The Teachers. YOU are the support system. YOU are my heroes.

Without YOU, there is no achievement. And yes, I am all for giving ALL of the credit to our children. They are the ones that are doing the incredible amount of work that it takes to achieve milestones that other children seem to arrive at with ease. But YOU are an integral part of the process.

YOU are there, every day, every step of the way. And YOU just don’t get enough credit. YOU don’t even want the credit, because YOU only have eyes for the love of your life, your child.

BUT I SEE YOU. And YOU are my hero.

I am walking the walk with YOU and I know what it takes. The passion. The dedication. YOU get up at the unholy hours. YOU show up over and over and over again. And people think they understand but if they are not living the special needs life, they don’t have a clue.

YOU inspire me. YOU motivate me. And wherever YOU are on the path, however YOU feel about how well YOU are doing it, the fact is that YOU ARE doing it.

YOU remind me every single day what it is all about. YOU are my inspiration. YOU are my tribe.

Thank YOU for being my hero.

Listen:

Sometimes we get into a pattern. Days flow in and out. One day kind of bleeds into the next. And then, something prompts you to look up out of your routine and you realize this – the best descriptor you have for your day is “ehh.”

What is “ehh?”

To me “ehh” is a monotone. It is a non-joyous state of being. Not necessarily a depressed or angered state, just neutral. Flat. An overcast day without the cool breeze. A still moment without the relaxation. A vision of things in shades of gray even though you know you are surrounded by color.

The state of “ehh” is an easy one to get into, whether or not you are living the special needs life. There is a complacency that comes into being when you have the job that doesn’t thrill you but pays the bills or the medical condition that isn’t necessarily life threatening but makes it harder for you to go about daily life.

And then there is the routine that you finally get into with your child with special needs. You know, after the wild rodeo that is discovery, diagnosis, plan and treatment or educational path. Or both. You dream about getting to a sense of eveness where you can begin to predict what your child will do in certain situations. Or where you can have an evening where you actually sit in your recliner and zone, surfing the internet without a million interruptions (boy, is that a big milestone!).

But sometimes, when we reach these levels at work, at home, caring for our children with special needs (or without), in marriage, we kind of… stay there.

And why not? It’s comfortable. It’s familiar. It’s easier.

Let me tell you why it’s ok to stay in this zone for a bit but not to unpack and live there. It’s because it puts you in a state of “ehh.”

So when someone asks you (or you ask yourself) for a few days in a row, “How was your day?” And your answer is “ehh,” the time has come to ask yourself how you can move beyond this to answer good, or, even better, great.

What’s the secret to moving up the ranks toward a joyful day, as a person and as a caregiver for those with special needs?

Planned (or spontaneous, if you can manage it) joyful moments.

Now, I know that some of you just shut down when you just read that you have to PLAN ONE MORE THING while living the special needs life but hear me out. Unlike planning for your child, school, therapy, medical procedures or how to survive a supermarket shopping trip with your kid, planning joyful moments can be a lot of fun. In fact, I would bet that at some point in your life you did this and were quite good at it. Back when you were a kid. Before the adults screwed it all up for you.

Do you remember when you were a kid and the only thought you had was what fun thing you were going to do next? Maybe you liked to ride your bike. Or you liked to color. Build with legos. Play games. You’d finish one thing and then say, what fun thing do I want to do next? And, although you probably didn’t use these words, you planned your joy.

When did you stop? Was it when adults started asking questions like, “What do you want to be when you grow up?” (Did you know what you wanted to be when you grew up? I still don’t!) And then you had to think long term and plan for hard work for a goal that was shadowy at best when you were 6. Or how about this one that so many people I know heard in their childhood? “You need to stop doing XYZ and start focusing on your future. XYZ may be fun but it doesn’t pay the bills.” And you stopped doing XYZ.

Then there are those of us that were raised by parents who suffered from a lack of joy. Maybe they were depressed, maybe they were having a hard time, maybe they suffered from anxiety. I certainly experienced that in my family, particularly with my mother, my best friend in the world. She suffered tremendously from depression. And so, it is very hard to figure out how to inject daily joyful moments when your first role models aren’t able to show you how.

But, eventually, we move on and we stop ourselves from purposely putting joy in our day with no help from anyone. We often don’t even notice. No one teaches us about work/life balance and they sure as heck don’t teach us about work/life/caregiver/joy balance. There’s no model. And we move, quietly and without fanfare, into the state of “ehh.” Our days are “ehh.” And we feel stuck in a rut.

Is it time to get out of the state of “ehh?” If that question speaks to you strongly, your answer may be a resounding YES (And if that question makes you feel even more exhausted, you may not be ready. This is perfectly fine. After the roller coaster you have probably been on as a caregiver, sometimes a state of “ehh” is a relief, isn’t it?).

But for those of you who feel ready to inject some joy, you can start right now. You don’t need to have money, much time (who has time as a caregiver?) or even new ideas. Simply reflect back on what you used to like to do when you were younger, before it all got so hard. Who were you then? What brought you joy? What did you enjoy?

Identify what makes you smile. Inject that in small amounts into your day. Work your way up to larger amounts.

In no particular order, things that bring me joy daily include writing, reading, painting, playing the piano, yoga, Tai Chi, Qi Gong, walking, pilates, hiking, drawing, dancing, traveling, playing with my children, hanging out with my husband, lots of LOUD music, crochet, crafting and meeting with friends. I also try to look at the sunrise and sunset almost every day, a ritual that takes only a couple of minutes but never fails to awe me. These things sometimes happen in very small amounts based on how much care my son with special needs requires that day (athough the older he gets, the easier things are getting). This list may sound absolutely terrible to you or incredibly wonderful. That’s because it is specific to me. What’s on your list? If you don’t have one, take a moment to reflect on what might be on it. Don’t worry if you get stuck when you first start the list. Mine evolved over a long period of time and is still evolving today.

But make a list. To refer to when you enter the state of “ehh.” Because, sometimes, in all of the stress of living the special needs life, we forget what makes us happy.

If you are getting lost in the quest for your special needs child to be found, you are not making a good trade. Take care of yourself. The more joy you feel, the more joy you spread, the more joy your child with special needs receives. It’s a win-win.

What kind of joy are you currently injecting into your life? Please share in the comments below.

As education in our country shifts and changes over time, teachers are constantly being introduced to new concepts. They then hand these concepts to their students. And the students, our children, bring them home to us.

Which is what my 9 year-old neurotypical daughter did the other day, when she brought up, “The Power of Yet.”

This concept is not new to me, but it is new to hear it from my child. And the fact that it is obviously being used in the classroom means that her generation is experiencing a level of emotional support as they learn that was sorely lacking when we went to school.

As education, however you feel about it politically, has evolved in the last 10 years, the buzz words have shifted to having a “growth mindset.” Having a growth mindset means believing that learning and intelligence is something that can advance and change over time. It can be developed. And it has a focus on self-improvement.

So when my daughter talks about the power of YET, it means that she may not be able to do something, YET. It leaves the door open to the possibility and even the probability that she WILL be able to do it in the future.

And, this, very powerfully, takes the place of, “I can’t do this.”

In the special needs community, the power of YET is even greater. Look at how these statements change with the simple addition of the word YET:

• My daughter is 7 years old and isn’t potty trained… YET.
• My son has cerebral palsy and can’t walk… YET.
• My brother is developmentally delayed and can’t write… YET.

It is also powerful for caregivers. Check out how these statements change:

• I am not finished mourning… YET.
• The meltdown is not over… YET.
• I have not gotten the rest that I need to function… YET.
• I have not gotten to self care today… YET.

Look, we know that living the special needs life might mean that some of these things will never happen like we originally envisioned. But that doesn’t mean they won’t happen at all. Or happen later than first envisioned.

For me, there is great power in using YET. My son is not potty trained YET. But recently, at the age of 7, he showed signs of beginning to understand the process. We are wildly excited about this. My son doesn’t verbally communicate consistently YET. But sometimes he will say things that are wildly funny and very appropriate to what is happening around him. My son doesn’t eat all solid foods, YET. But he choked every single day at every single meal for a year to the point of needing intervention so if he could outgrow that, he can get to solids. He just hasn’t. YET.

It seems like a small thing to use this word, YET. But sometimes in our whirlwind of caregiving, small changes are all we feel capable of. And this is a powerful one.

You may have not tried this, YET. I’m leaving the door open for you.

I used to be a teacher in a school that was, shall we say, CHALLENGING. It was a Title 1 school, low income, in a neighborhood that often had visits from first responders. Sometimes, at recess, we would hear gun shots. Although the teachers would be very alert to it, checking for the safety of our students, our students had become used to it and often wouldn’t respond to the sounds at all. To them, it was just another sound in their daily lives.

Our staff went through a lot. It was elementary school but our students had already lived through enough that many were old, tired souls. We dealt with drug possession, weapons possession, sexual interactions on campus (at five and six years old), violence, custody battles and more on a daily basis (and often more than once daily). Our students were often unable to use their imaginations in the classroom. Their daily experiences had taught them that this was not a thing of value and they had practically had this beaten out of them. Therefore writing fiction, making art and being creative was extremely hard for them. They had to be practical to survive from a very young age.

We learned as teachers to become subversive to get what our students needed. There were rules but there were ways around them if you were persistent. I was very persistent. My students were not going to go without, not on my watch. I fed them, clothed them, cleaned them up, broke up their fights, separated their sexual interactions with as much grace as possible, loved on them hard and went home exhausted every night to crash out for a few hours before getting up the next day to do it again. I made home visits to illegal businesses when I couldn’t track the parents down at home. I tried not to inhale too deeply when I did visits at the actual homes. I attended funerals of family members who had been shot. And, after all of this was first accomplished, I still had to teach them the curriculum. I was not a one woman show – the staff at this school was an incredible team.

The students had a lot of “special needs.” I wouldn’t categorize them as the “people with special needs,” that I usually talk about on this blog, but they did, in fact, need to be handled and cared for in a different way than typical students.

Sometimes I did things that walked the line.

Suffice it to say that it was for the greater good and that taking a risk for myself to get my students what they needed seemed like a trade-off at the time that I was willing to make.

Anyway, I recall that one day I was going about the building trying to gather resources that my students needed when I ended up sidelined by the school counselor. I was absolutely doing something that I wasn’t supposed to be doing, to get things I wasn’t necessarily supposed to be getting, to give things to those who definitely were supposed to be getting them. My usual mode of operation.

The counselor pulled me aside and told me that I shouldn’t be doing what I was doing. That, yes, the students desperately needed what I was trying to accomplish, but that I could GET IN TROUBLE. I looked into this woman’s eyes and saw fear there, for herself and for me. She began to list all of the possible things that could go wrong if I made the decisions that needed to be made for the good of my students. I could GET REPRIMANDED. People might DISAGREE WITH MY DECISIONS. My superiors might be UPSET AND DISAPPOINTED with my choices. I might even GET WRITTEN UP.

I calmly waited for her to finish. Then I looked her straight in the eye and said, “If you are going to do this job and you are going to do it the way it is needs to be done, you can’t move from fear. You HAVE TO MOVE FROM STRENGTH. If I moved from fear, I would never get anything done for these kids. Fear has no place in my decision making process when I am here.” And I walked away, leaving her standing there, mouth agape. I had no time for fear.

Did I feel fear? Of course I did. But I wasn’t allowing it to rule my decisions or my actions.

Feeling fear is an important ability. When you have a mental or physical response to something that you categorize as fearful, your body is telling you to be alert to danger. The problem is when you allow it to overcome rational decision making. You need to be able to take the information that you have and make the best decision that you can make with it at the time. You also need to be able to see the possible outcomes, both positive and negative, while controlling your fear response so that you don’t get overwhelmed. These are not innate skills that you are born with. It is a learning process that takes time, practice and patience to master.

What does this have to do with living the special needs life? With being a parent or caregiver of a child with special needs? EVERYTHING.

You may have to move mountains to get what your child needs. You will be presented with situations you never dreamed of when deciding that you wanted to be a parent. Your child may do things that you never imagined having to deal with. And you will sometimes be overwhelmed.

THIS IS A NORMAL RESPONSE.

When you take a look around at all of the other parents who appear to have it all together and seem able to manage everything while you are struggling with even the simple things, I guarantee you that at some point you will feel fear. I mean, who wouldn’t? Your child is DIFFERENT. Your situation is DIFFERENT. Your way of doing things most definitely will look DIFFERENT (are you sensing a pattern here?).

And being different, doing things differently, having a different situation, isn’t easy. When you look around for support from others, they are not always going to understand. They will look at the sometimes outrageous things that you do while living the special needs life with fear. They will question your decisions. They will warn you – BE CAREFUL!!! Don’t get in trouble! Don’t rock the boat!

We who are living the special needs life do not have the luxury of living in fear. We can’t. Our children with special needs are depending on us to make some tough choices in a timely manner so that we may move on to the next tough choices. And the next ones.

When you get paralyzed in fear, that “oh, crap,” feeling of what if this or that happens, your power becomes diminished. You stop moving from strength. And you know who suffers? The ones that are most important. Our children.

Do yourself a favor and stop carrying the fear of the world on your shoulders when you make decisions for yourself and your child. Yes, there are possible repercussions to every decision that you make. Make the decisions anyway. Do your very best with the information that you have at the time, make the decision and accept the consequences whether they show up now, later, or never.

They say that teaching is a subversive activity. That goes double for parenting when living the special needs life. Do what needs to be done, in whatever way you need to do it to make sure that the one who needs it the most gets it. Then pat yourself on the back. And come back tomorrow to do it again.

How do you overcome fear to make the best decisions for your child with special needs? Please share in the comments below.