Month: March 2019

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.

My son, Kai, who is seven years-old and has special needs, recently switched a word he has been using. Kai has been on the cusp of communication for the last two years after at least FIVE YEARS of speech therapy. We have a lock on the refrigerator after an “applesauce incident.” Before, he would either gesture to the refrigerator to show he wanted it “open,” or he would use the word, with a mangled presentation that was probably only clear to us. We, however, were overjoyed that he was communicating at all and so thrilled when he recently upgraded. Now he pulls you to the refrigerator and more often than not will say, “door.”

And when I share this story with people, someone will invariably say, “It’s the little things that make us happy, isn’t it?”

I smile and agree. But inside me, I feel frustrated.

How about this? My son is seven (seven!) and has been sitting on the potty at school daily doing nothing for YEARS. Therefore, considering that his older sister in nine, I have been CHANGING DIAPERS FOR NINE YEARS. The other day, he sat down on the potty and peed. On the floor. You would think our family had just won the lottery, we were so excited.

So I shared this story with others. And someone said, “Gosh, the littlest things make us so happy, don’t they?” Sure. I smiled. Are you sensing a pattern?

My son has discovered light switches. It took him seven years to find them. And now, he loves to turn them on and off. He has discovered cause and effect – if he flips the switch up, the light goes on! If he flips the switch down, the light goes off! Once he figured that out, he wanted to test every switch in the house repeatedly to see if it will happen every single time. Guess what? This is how kids explore science in the early stages! We laugh with joy as we live in a disco world where you never know if the lights will go out when we are brushing our teeth. My son is exhibiting a developmental milestone after having missed the cues for SEVEN YEARS that were right there, in every room! This is amazing!

Of course, I shared this story with others! We are so excited! Can you guess what someone said? Yup. “It’s the little things.”

I have a secret. When someone says that, there is a teeny, tiny piece of me that wants to punch them. Please don’t tell anyone.

I’m wrong. I know that they are showing support in their way. They mean it as an agreement that it is something to take joy from and celebrate.

But Kai’s achievements and the achievements of all folks with special needs are FAR from “little things.”

Want another example? Kai has had issues with eating for years. And when he was maybe two years old, we started a terrifying year of daily choking. He had graduated, finally, to pureed baby food after intense feeding therapy (yup, that’s a thing). And now, he was choking on it. EVERY SINGLE DAY. To the point that he needed intervention at every single meal. As in, if we didn’t help him get the food out of his throat he was going to suffocate and die.

My husband, who can do most anything, couldn’t bring himself to do the hook method (which was the procedure at the time). He was terrified that it wouldn’t be successful and that our son would die. So it fell to me. Oddly, I felt very calm and proficient at it. Even so, can you imagine the stress levels of two parents who daily, for an entire year, had to rescue their son from choking to death at least three times a day? And then, he finally moved on to not choking. On his third birthday, for the first time ever, LONG after other kids had their first taste, my son ate the first small piece of cake he had ever had in his life and HE DID NOT CHOKE. And let me tell you, ya’ll, I cried, I was so happy.

Cause, you know, it’s the LITTLE THINGS. (Of course someone said it. You knew that was coming, didn’t you?)

And, just for the record, it is not just folks with typical kids that say this to me. Special needs teachers and caregivers have said it, too. It BLOWS MY MIND. Also, for the record, my husband rightly pointed out that I use the phrase, “Little things make me happy,” all the time. But, when I say this, I am not referring to Kai.

For me, the little things that make me happy include but are not limited to:

• a freshly brewed cup of really good coffee
• a shower that has hot water all the way through to the end (a rare luxury when you have a big family)
• a really good book
• hearing something that makes me laugh
• enjoying the company of a friend that I really like

These are the simple things, the little things, the good things that make daily life a little sweeter.

When my son, who by the way, is our shining star, accomplishes something that took months to years in the making, with hours and hours of therapy and hard work and failures and restarts and therapist changes and appointments and practice, it is NOT A LITTLE THING.

It is a really, really big thing.

Is this an issue of semantics? Probably. But just like hearing nails on a blackboard (now, THERE’S an example that highlights my age), my reaction is instantaneous. I smile at the person while, inwardly, I wince.

I know that there are differences in communication and word choice. And when people with different styles come together, sometimes miscommunication occurs, so it is really, really important that people consider not just the words but the meaning behind it. What is the intention? These people are AGREEING with me. They really are.

I repeat this to myself, in my head, as I smile and nod in agreement in return.

I will not punch them. I will not punch them. I will not punch them.

Okay, okay. I’ll be good.

What phrases annoy the heck out of you in relation to your child with special needs? Please share in the comments below.

I married a man who had custody of his three kids. I went from no kids to three kids, full time. When I showed up they were 12, 10 and 6. Now they are 25, 23 and 19.

We then had two more. My nine year-old girl is neurotypical. My seven year-old son, Kai, is special needs.

When I was pregnant with Kai, my oldest daughter, Autum, and I were pregnant at the same time.

This was great fun (and caused my husband to joke about feeling like Father of the Bride). I had a pregnancy partner. We talked about what worked for nausea and what didn’t. We shopped for maternity clothes and swapped them. We were both pregnant with boys. And then, Autum left the pregnancy club and had my grandson, Jacob. About ten weeks later, Jacob’s uncle, Kai, was born. Both of these births were seemingly normal and uneventful from a medical perspective. We had two beautiful boys. I remember one time when we were all on the front porch of our house and someone asked us if the boys were twins. We had so much fun explaining that they were, in fact, uncle and nephew.

Jacob starting doing things. He sat up. He moved on from a bottle to soft foods to table foods. He started walking.

Kai didn’t.

Over time, as Kai began to fail his milestone checkups, the gap began to widen. They started to look remarkably different in age even though they were just ten weeks apart. Because Kai still seemed like a baby. And Jacob was evolving into a little boy.

Fast forward to now. The boys are seven. Over the years, Jacob has pursued Kai relentlessly to be friends and play together. Kai, more often than not, brushes him off. Not because he doesn’t love Jacob. Kai loves Jacob and feels very comfortable with him. It’s just that Kai is still developmentally in the 12-36 months range and so is still a side-by-side kind of guy. He likes having people nearby but doesn’t necessarily want to interact.

Over time, Jacob has figured Kai out. Because both of Jacob’s parents work, he takes the bus to our house after school, where he hangs out with us until Mom or Dad comes to pick him up. Jacob and my daughter get off their school bus together. I help Kai get off of his bus, which is different because he attends an all special needs campus in another town (no inclusion for him and this is the correct placement). When Kai walks up the path to our front door, Jacob often holds open the door for him and says, “Welcome back, Kai, I am so glad that you are here.” Kai smiles and walks through the doorway. Sometimes Jacob will share a banana with Kai, holding it so that Kai can lean over to take a bite. And Kai lets him do this. If Kai is doing something we consider to not be safe, Jacob will come tell me. He’s a good helper like that.

At the beginning this was really, really hard for me. As a former teacher, I am trained to see developmental and academic differences by comparing a certain student to the hundreds that I have seen over the years. The other students are called, “typical peers.” After a while in teaching, you get to know the wide range of what is considered normal or average behaviors and abilities. This skill highlights what are called, “red flags.” When you see a student who looks different, a red flag goes up in your mind. It is a caution to investigate further. To make sure that the student gets everything that they need to be successful. Maybe more support. Maybe special arrangements. Maybe testing, etc.

So, because I am trained to see it, after I became aware that Kai was struggling developmentally, for a while, it was all that I saw. And the comparisons with Jacob began in my mind.

When I would see Jacob playing with my daughter, I would think, that is how Kai should have been. When I saw Jacob starting school on a typical time frame with no intervention, I would be happy for him and sad for myself. Because Kai wasn’t. When Jacob was able to verbally request things, I was thrilled for him. And sad for Kai. And so it went.

But the thing that I came to realize after a while is that Kai is not bothered by this at all.

If there was ever a person who was completely himself, with solid likes and dislikes, preferences and a devilish sense of humor, it is Kai. Happy-go-lucky, happy to be here, not a care in the world other than having his basic needs met; Kai is totally himself.

Who am I to say that it should be different?

There is so much PRESSURE on special needs parents and caregivers. Some of it comes from our families, some from society, the school system and, ultimately, the vision that all children should follow a similar path. Developmental milestones that are checked off in the first year of life, potty training before starting school, pre-K at three or four years old, Kindergarten with its list of standards that must be taught in public school whether your child is really developmentally ready to learn them or not. The list just keeps going.

I fell into the trap, at least in my mind. It made me feel sad. Mournful. It made me feel like I produced a child that failed. Although I was wildly in love with Kai, it was always tinged with sadness.

What an absolute waste of time.

The second, and I mean THE SECOND that I figured out that all of this pressure was in my head and that I wasn’t required to feel this way, I was able to breathe. Because, guess what? IT IS ALL IN YOUR HEAD. Your child does not have to be typical. Your child does not have to progress at the same rate as other children.

Your child has the right to be exactly who they are.

Kai is exactly who he is supposed to be. Who I thought he would be is a fantasy. Comparing his development to Jacob’s is ridiculous. They are completely different people. Comparing real Kai to fantasy Kai is a recipe for disaster. And so not fair to real Kai.

Because fantasy Kai doesn’t exist. And, I have realized, I don’t want him to.

I am not saying I never feel a twinge anymore when I see Jacob do things that Kai is not developmentally ready to do and maybe never will be. But, I have to remind myself, that when I do I am not being fair to Jacob, Kai or myself. And I have learned to let it go and enjoy my son.

My real son.

By the way, Kai recently sat on the potty at the age of seven and peed on the floor for the first time. This event showed that he understood the concept of what he was supposed to do when sitting on the potty. This was a wildly exciting event in our family. And it makes me smile when I think about it for more than one reason. I smile because although it looks different when Kai does it than when Jacob does it, this is something that they sometimes have in common.

You know, it’s that seven year-old boy thing.

I think this and I smile. And then I laugh.

How have you overcome the fantasy of what your child may have been to enjoy who your child really is? Please share in the comments below.

I was at a karate tournament in East Texas when I spotted Molli. It was hard not to take notice of her. First of all, she is stunningly beautiful. But, secondly, when she first caught my eye, it was because she was sparring, sitting in a wheelchair. And winning.

She took my breath away. Molli was punching, using both hands, and KILLING it. In a special needs world where we don’t always have enough role models, there she was.

Molli was born with Spina Bifida (L2, myelomeningocele). Spina bifida is a congenital defect of the spine. Part of the spinal cord is exposed through a gap in the backbone. Depending on the severity, it can cause paralysis of the lower limbs and, sometimes, mental handicap. The most common kind, Myelomeningocele, is a neural tube defect where the bones in the spine do not completely form. This is what Molli has. But when you meet her, it is not the first thing, or maybe even the fifth thing that you notice about her.

This is a nine year old with a tremendous appetite for enjoying life. Recently achieving her first medal in karate is only the latest in her line of things she enjoys. Molli has taken dance lessons since the age of three. She loves video games, Broadway musicals and football. She is also a very enthusiastic traveler, earning the nickname, “Road Dawg,” from her mother, Mitzi.

In fact, Mitzi says that Molli has never even questioned her disability. Molli goes for whatever activity that interests her, adapting it to her ability level.

Mitzi found out about the Spina Bifida through an ultrasound during her pregnancy. She was told repeatedly that Molli may be mentally challenged. That she might be paralyzed. That even though Mitzi might feel her kicking and see her legs moving on the ultrasound screen, it didn’t mean anything. It was a terrifying experience.

No mother imagines having a child with disabilities when they become pregnant. Little did Mitzi know that she was about to meet her best friend and begin an incredible journey together.

In the NICU, Molli’s foot started moving. She figured out how to crawl at the age of two. By the age of three, Molli began to be able to bear weight on her legs, using a walker. And then, a few months later, she was taking her first steps. From the age of four, Molli has been able to walk using forearm crutches, which she is able to do to this day.

While things may look a little different when Molli does them, in a lot of ways she is a typical kid. She loves to eat chimichangas, cheese and her most favorite – Hot Pockets. She is an avid fan of the WWE, Ridiculousness and the New England Patriots. Disney and Nickelodeon keep her entertained. And, like a typical nine year old girl, her stuffed animals, Gronk and Lilo, and her American Girl dolls make Molli happy.

This is a girl who does not sit on the sidelines or stay in the shadows. We need more role models like Molli. They are out there. Take a look around. They are not hard to find because they shine so brightly.

If you are just beginning your special needs life journey and you are frightened, just look at Molli. Keep your eyes on the prize. Your child, no matter what accomodations they may need, can shine like this.

Want to comfort and offer a role model to special needs parents who are at the beginning? Please share your amazing stories about your child with special needs in the comments below.