Yesterday I went to observe the Tae Kwon Do black belt test of a dear friend. If you have never seen this type of event before, it was a brutal physical, mental and emotional five hour test that pushes the individual to the end of their comfort zone and beyond. But it is also filled with symbolism. Included were many symbolic items of the journey that the candidate has taken, including the belts of all the ranks they have held before. The belts also have stripes on them to show the levels obtained between tests. There were objects that sparked recollection of past achievements, past failures and past conversations. Because, obviously, my friend didn’t just get up one day and decide to take this test. You can’t go from knowing nothing to taking the black belt test in just one day. It is the evolution, the commitment, the mistakes and the successes, compiled over time, that make the candidate into the warrior.
And it got me thinking – when was the last time you reflected on how far you have come as a caregiver?
We all sure know what we suck at. We will be the first to tell you how we could have done better for our children with special needs. That we could have, would have, should have handled something differently. But when was the last time you thought about the triumphs?
I’m not asking about your child’s triumphs. We think about and talk about that all the time. We take pictures and keep mementos. I bet you have a gazillion pictures of the first time your child achieved things. It is the most thrilling thing in the world when your child, after hundreds of repetitions and after no one thought they would or could, picked up cup for the first time at the age of 8. Or sat on the potty and peed into the air at the age of 7. Or said, “Hi,” for the first time at the age of 22. Or sat through dinner without getting up a million times because of ADHD at any age. We remember and think about and celebrate these achievements. We look back at our Facebook posts from 6 years ago and say, “Remember when our child couldn’t do that?” And now they can.
But, unlike in karate, where you can look at tangible examples of where you have been to remind you how far you have come and unlike your child’s journey that we document with pictures and memories, we as caregivers have a tendency to have very little documentation. I do not have a picture of myself in the kitchen the day that I saved my son’s life for the first time when he was choking by using the hook method. I also don’t have a picture of myself, fist pumping the air, on the last day I ever had to do this after an ENTIRE YEAR of doing it at every meal, every single day.
But, look how far I came. An entire year. Every meal. Every day. At first I did it in tremendous fear. By the end of the year, he would be choking hard and I would just pop my finger into his throat and clear it out, not even breaking conversation.
I don’t think about it because I do what I have to do when I have to do it. And so do you. But we need to think about it. We need to reflect. Because, you know what? You are improving with this gig over time.
Think about it. Wherever you are on the journey, thirty years or three weeks into it, you are more accomplished, more capable and better at caregiving than you were before. But no one is going to lay out all of our belt levels for us to see that, yes, over time we have developed into the warriors that we are.
So, you have become a warrior but since no one is handing you the black belt, the medal, the award, the reward, you may not even realize it.
But I know you see your mistakes. When I talk to caregivers, the same thing comes up over and over – I wish I was better for my child. I wish I didn’t make the mistakes that I make. I have fears that I won’t be enough. I worry that I won’t be able to give them what they need.
Here’s the thing. My friend, the one who took the test? It wasn’t a straight path to get there. He stopped and restarted. He changed his mind, then recommitted. He made mistakes. He got hurt emotionally. He got injured physically. He dropped the ball. He picked it back up again. And all of that led to this one culminating moment where he passed the test.
Not unlike our journey, is it? Except we don’t have a culminating testing moment. Because that is every minute of every day.
So, while you are beating yourself up over what you did wrong and why you could and should be better, please take a moment to lay out your own mementos in your mind of your journey. Not your child’s journey, YOUR journey. Where did you start? What have you overcome? Where did you deserve a medal? Where did you level up as a caregiver?
Because you did. You started. You persisted. You overcame. You are here. And I am so proud of you.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
Our family was recently staying at a hotel that had a swimming pool. My nine year-old daughter and seven year-old son love to swim and were so happy to be in the water. But Kai, our son, especially loves it. Kai has special needs, eight different diagnoses and is obviously atypical when you see him. He was wearing a life jacket, unlike his similar age peers. And, for the first time ever, he was going in and out of the pool by himself. He doesn’t need to be held anymore or shadowed as closely. Even low-functioning special needs children grow up, huh?
Since I didn’t have to be in the pool with him, I was seated at a table nearby with my husband. Of course, we were watching them both closely. And along came Julia.
Julia is my new friend. She is bright and brilliant and quirky and creative and just the thought of our meeting makes me smile. And even though I live in Texas and Julia lives in the Midwest, we became fast friends. We recognized almost immediately that we were kindred spirits.
Julia and I met because of Kai.
Although, I think that it’s possible we might have met anyway, as she is super friendly, Julia’s son, Nick, is 28, has special needs and is low-functioning. She picked us out right away. It’s like finding a relative you didn’t know that you have. She saw her experience in ours and after a couple of minutes, I saw mine in hers (Nick wasn’t there but his gorgeous picture was admired by all).
Julia and I have similar lives. This is the life of the special needs caregiver. Although our children with special needs may be VASTLY different, our paths, as the caregivers, are surprisingly similar. We understand each other on a deep level. We can say things to each other that others won’t understand. We can laugh about disgusting things that happen at 2AM (and often, at 2PM).
But I truly think, having spoken to hundreds of caregivers over time, that making connections between caregivers is easier when your child is low-functioning. Why? Because those families are easier to pick out of a crowd.
There is absolutely no doubt in anyone’s minds when they look at Kai that he is atypical. Not so for my friend’s high-functioning son with Asperger’s. He is often misjudged as hyper, deviant, a child who “needs a firm hand.” His parents often feel judged as inept instead of cheerfully greeted as kindreds.
So, while I often tell parents of high-functioning children with special needs how happy I am for them that their kids are high functioning, I feel that in this regard, I am blessed. My tribe can find me on sight. Often, I can find them. And making these connections is so vital, because caregiving can feel so isolating.
So I am thankful for Julia and all of the Julias that take the time to see us and connect with us and enhance our lives, whether for a moment, an hour or a lifetime.
Please, I know that you are exhausted and overwhelmed from being on call 24/7/365, but you need this. You need to make these connections. For your own support. Because if you have support, you’ll do the most important job in the world even better.
Especially if your child is high-functioning and so blends into the crowd, find your tribe. We are out there waiting to meet you. So many of us want to know you. We just can’t tell if you are one of us when your child presents as typical. So say hello. Go to the parent support groups. Find a Facebook group. Ask for referrals to meet other caregivers through your school, your social worker, your therapy center.
We are out here. We understand. My hand is reaching out toward you.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
We are on vacation, traveling by car back from Brooklyn to Texas. We are in Memphis, at a hotel and this morning at breakfast, my husband asked, “If you could change Kai to ‘normal,’ would you do it?”
Kai is seven years old and has eight different diagnoses. He presents as low-functioning autistic. But he also has PVL (periventricular leukomalacia) and Duplicate Chromosome 16. And delays in all areas. And more. He is still in diapers. He is getting big at 4’4 and 65 pounds.
It seems like a crazy question. Who wouldn’t want that for their child? And yet…
Kai is amazing, just the way he is. He lights up a room. He creates joy in a space that lacked it only a moment before he walked in. He is my greatest student and my greatest teacher.
I would miss him if he were to change.
But…
One day, we won’t be here to care for him. And wouldn’t his life be better if he were able to care for himself then?
But still…
Kai has not a care in the world. His needs are simple. He only wants to be loved and cared for. He wants his tablet and a sippy cup full of milk. He wants cookies. He wants to be in water, to swim, to take baths. He doesn’t care if he is invited to birthday parties and has no inkling of whether or not others are looking at him in public. He is so HAPPY. Pretty much every day. And that is a good life, better than a lot of lives of people that are intellectually more aware.
The truth is that having known Kai and being introduced to the most surprising, amazing journey of my life has changed me. I would miss who he is now tremendously. I don’t know if I could do it. Wave a magic wand and have Kai be… well, who? Not himself?
To me, it is unthinkable. And I am so surprised by that.
But I think that I would have to do it. Because one day I won’t be here. One day my husband won’t be here. And although I can put the necessary things in place to make sure as best as I can that he will be cared for, it won’t be me or my husband that cares for him for the second part of his life. And although Kai’s siblings are amazing and great with him, it is a tremendous responsibility. That they have accepting it gracefully, even though they never asked for it, warms my heart every single day.
I’d have to do it. So that Kai could care for himself when we are gone.
The thought makes me want to cry.
Because I have realized that, to me, he is perfect. I want exactly my Kai.
This is the one time I am grateful that I am absolutely useless at performing magic.
Would you wave a magic wand and make your child with special needs typical? Please share in the comments below.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
Take a look at the meme above. I have seen different versions of it all over the internet so my guess is you may have seen it, too. As a caregiver of a special needs child, what do you think of it?
It annoys me.
I am about to speak specifically about ONLY my child. Please don’t become offended because you perceive that I am calling YOUR child weird or odd. I am not.
My son, Kai, is seven years old and has about 8 different diagnoses. Developmentally, depending on what you are measuring, he is somewhere between 20-36 months old. But he is the size of a robust seven year-old. He is very strong, about 4’4 and weighs about 65 pounds.
Kai stims. He used to slap himself in the head. Then, after an incident when he was about two years old at a daycare where another child choked him, he also added in throat-punching. He only punches himself, not other people. So, if Kai needs input (stimulation) or feels stressed or even just excited, he will sometimes, without warning, haul off and punch himself in the throat. Really hard. And sometimes there is a loud, popping kind of sound that accompanies the impact. He hits himself so hard that he often has a bruise. I have had doctors look in his throat and he is not hurting himself internally. But this is an ongoing behavior.
It is a very startling experience if you have no idea that it is coming. In fact, we are currently in New York on vacation (we live in Texas but I am a native New Yorker). And in a city where the cultural norm is that no one looks each other in the eye on the street, I have seen people stop short with wide eyes when passing us on the sidewalk. It is that startling.
It is WEIRD. It is ODD. It is DIFFERENT. It is STARTLING.
So, maybe your child with special needs blends into a crowd. But our child doesn’t.
Kai also rocks and spins and sings and makes sounds. He is learning to talk but is often unintelligible. When people see him, they immediately know that he is OTHER than them.
The words weird and odd could be used as synonyms for different, except I think that they have a slightly more negative connotation. Still, in our case, you could definitely use these words to describe Kai.
It doesn’t make him any less amazing. He is smart, beautiful, joyful, a problem solver and brings happiness to everyone around him. His Dad and I believe that this is his purpose in life – he is a joy giver.
But to deny the fact that he appears weird or odd is to deny the feelings of those that first meet him. A lot of people have a shocked initial reaction, especially with the throat punching. This popular meme invalidates the feelings of these people, in my opinion. So, instead of acknowledging their feelings and admitting that, yes, it IS in fact weird or odd, but inviting them to come a little closer to meet Kai and learn about him and our world, we are shutting them down. We are telling them not to feel what they are feeling.
I think this blocks them from moving past their feelings. And, in turn, doesn’t build the bridge that we need to create a world where weird and odd is OK. Because we are all different. Some just wear it on our sleeves more than others.
Again, I’m not calling your child weird, or odd. What I’m saying is that I find it weird, and well, odd, not to acknowledge what’s right there, in front of my face. And yours, when you meet my child.
So, come up and meet Kai. He may do something weird, or odd, but when you look past that, he is amazing and worth getting to know.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
For the longest time, I was Kai’s Mom. And that’s it. We had a long, hard journey, with Kai’s diagnoses coming at the same time as my mother’s Alzheimer’s disease. And then, we were unexpectedly homeless. And then, my husband got sick. But I digress.
I believe that life is cyclical. There are upswings and downswings. For the longest time, I was in a downswing as one thing after another kept hitting me like ocean waves, knocking me down over and over. Everything was narrowed down to survival mode – I did what I could do with the energy and mental availability that I had to do it with. And that was all. Because Kai is my number one priority, coming before EVERYONE and ANYTHING, what I mostly did was be his Mom. His caregiver. Whatever was left went to the rest of my family. But time moves on, eventually, and things change if you wait them out long enough. Life offered an upswing and recovery for me began.
It took FIVE YEARS for me to begin to feel better. Five long, hard years. I am nowhere near the person I was before. There are pieces of the old me still there but the new me far outweighs them. I have recently met myself for the first time. I am surprised.
I really, really like myself.
That feels funny to say. But when I think back to all the different incarnations of who I have been in the past, I like this me best. So far. I am open to even better versions. In fact, meeting me is becoming an adventure. I’m digging it.
There is a thing called post-traumatic growth. You can read more about it in this blog post:
I have the guilt that comes along with this. I have benefited from my mother’s harsh experience, from my son’s diagnoses, from my hardships. It has helped me develop into a person I never even imagined.
This is OK.
I needed someone to tell me that this was OK because I felt badly about it. But no one did. And I think that this is part of the reason I was struggling so hard for so long. So, eventually, I figured out that I can tell myself. It’s OK. And it is.
It is OK to still be you when you are a special needs caregiver. Whether it’s the old you or a brand new version of yourself – either is OK. For a while, you may not want to focus on you. All of you will be all about all of your child. But, eventually, when you come back to yourself (and eventually you will), you don’t need to feel badly or guilty about also wanting to be you.
You are supposed to be you.
Your journey is special and different than most. You are having an experience with your child with special needs that most know nothing about and wouldn’t ever think to dream about because on paper it looks awful. What they don’t know is the incredible, joyful, amazing experience you have been given. They don’t understand. That’s OK, too. They don’t have to.
If I could go back in time, not that long ago, I would comfort myself, give myself a hug and let myself know that it’s OK. But I can’t. So, I’m hoping that I can do it for you.
I’m giving you a hug. And I’m letting you know, it’s OK to also be you when you are a caregiver. Really. I promise.
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!
After two and a half years on the waitlist, recently our seven year-old son, Kai, was blessed with an incredible gift – his very own physical therapy bike. If you’ve never seen one of these before, they are built to the specific size of the person who will ride it. The rider sits in a seat that can include a seatbelt as well as straps for upper and lower body support. The pedals have straps to hold the feet on in two different ways. The bike also has rotating hand grips so the upper body is worked at the same time as the lower body.
These bikes can cost several thousand dollars. If your child is in physical therapy, and they qualify, you can apply to get on the waitlist to be awarded one of these bikes. All you have to do is ask.
When we got the call that Kai’s name came up on the list, we were overjoyed. Kai has limited interests but he has always enjoyed using these bikes in therapy and at school. And now, he would have one of his very own.
We measured Kai per the directions that we were given and sent his measurements where we were directed to send them. We received paperwork stating that we needed to show up at a school in a town about an hour away, on a Friday. So, we pulled our son out of school and we went.
Unfortunately, this also ended up being one of those days where Kai decided that he would rise, for the day, at 3 AM. Which meant, that I, too, started the day that early. If you are living the special needs life, you know how precious sleep is. But, as a caregiver, you know that we don’t always get what we need. They come first. So, up at 3 AM we were.
When I have had enough sleep (when does that ever happen?) I am a different person than when I am sleep deprived. I mean, who isn’t? So I wouldn’t say that I was at my best on this day. But we were an excited family and so, with sleepy enthusiasm, we went off to pick up Kai’s bike.
We arrived at the outside check-in desk where several middle school students as well as supervising adults were waiting to greet us. The girls greeted Kai and when he didn’t reply, I said, “Kai is mostly nonverbal but he is very happy to meet you.” The girls looked surprised but still enthusiastic. Then the supervising woman handed me a familiar looking form. It was the same one that we had filled out 2 1/2 years earlier and she wanted me to fill it out again. Kai decided to take his tablet and sit down right on the sidewalk to relax. His Dad and I let him.
There was one line on the form for the question, “What is your child’s diagnosis?” I suppose that’s enough for most folks filling out the form. We have eight diagnoses, so I starting fitting it in as best as I could. I managed to make it to the seventh one this time and only had to look in my phone on the list I keep there for the eighth one; I’m getting better at remembering them all. Which makes sense, since I often have to list them or put them on forms.
The middle school girls were watching the seemingly ever growing list and their mouths opened a bit wider as I went. But they restrained themselves from commenting. I’m used to it. It’s a lot to take in.
I completed the form and handed it back to the woman. They gave us a pair of free socks for Kai with bikes on them (and it occurs to me right this second, where did we put those socks?) and a middle school girl was assigned to us to walk us into the school and take us to the gym locker room.
There were many families waiting there to have a physical therapist make the final adjustments for each child and bike, as all were built to size through measurements sent in. There was only one PT, so it was a bit slow. I decided now was an excellent time to use the restroom and left Kai with his Dad and went off. Finishing in a stall, the lights suddenly went out. For half a second I thought, “Power outage?” And then, right on the heels of that thought came, “Nope, it’s Kai.” Kai LOVES turning on and off light switches and had plunged everyone into darkness. The lights immediately came right back on, which means Daddy was on the case. Phew.
When I returned, a representative from the school was asking each family to send one member with her so we could find out what was happening NEXT, as the school was celebrating the fact that they had raised money to donate for the bikes being given to the children with special needs. I went and Dad stayed behind with Kai, still waiting for the PT.
With two other mothers, I followed the woman from the school into the gym. Now picture this – a large middle school gym that has high ceilings (something that freaks Kai out), that echoes (Kai has Sensory Processing Disorder), a table where the principal is sitting, playing LOUD celebration music and they want Kai to do what?
The other mothers and I stood there as the woman from the school launched into a VERY fast explanation of the plan.
“Your child will sit on their bike at this starting point. They will ride from one end of the gym to the other, turn around and come back. We will announce their name over the loud speaker and the entire school will sit in the bleachers and applaud them,” she said, nodding like we were totally with her.
Remember, we are special needs moms. We are overworked, usually exhausted and sometimes in a daze. One of the moms said, “I’m sorry… what?”
“I’ll walk the path and show you,” the woman said and took off across the gym.
We three stood there, blinking. One Mom said, “I’m sorry, I have no idea what she just said.”
I leaned in. “Don’t be sorry, we’ve been up since 3 AM. I have no idea either.”
We all nodded. We all understood each other, if not her.
The woman came back, I asked for clarification and we finally understood. Several HUNDRED middle school students were going to burst into applause after they say Kai’s name over a loud speaker, music will blare and Kai is supposed to ride his bike through the gym.
The other mothers and I eyeballed each other nervously. The woman from the school seemed to think it was a perfectly fine plan and led us back to the locker room.
I was slow to react, purely from lack of sleep. But when I walked back to my husband, I finally woke up enough to respond.
“I want to opt out,” I told him. I explained the situation. My husband instantly agreed that this was a recipe for disaster. We could both foresee a meltdown from the combination of high ceiling, loud music, hundreds of people and spontaneous applause.
Now, there were some kids there who had done it before and LOVED it. But these were more high functioning kids. They were older. And they liked attention. The exact opposite of Kai.
I went back out to the gym and sought the woman out. When I explained, she offered to lower the music and have the crowd clap softly. I stood my ground. And I didn’t say this, but I decided that if they were not going to award Kai the bike if we didn’t participate, so be it. Kai wasn’t even aware that he was getting a bike, so it wasn’t like he would be disappointed. Kai (and our family, but especially Kai) is my number one priority. Everything and everyone else comes second. EVERYTHING AND EVERYONE.
The woman agreed to let Kai opt out. She asked if we could take his picture. I agreed. Definitely.
When I got back to the locker room, I became friendly with another of the moms. I gave her my card and asked her to contact me later to become friends. And I told her and another mom that we were opting out of the gym event. They seemed to think that was a good idea but did not request the same for their own kids.
At this point the PT called Kai’s name and we went to get his bike adjusted. The bike was amazing. Built to Kai’s size, with a handle on the back for us to help him steer. It even had a little license plate on the back with his name on it. It came with a helmet (which he refused to wear – sensory issue). And the bike was bright red and gorgeous. Perfect.
The PT said, “Now take the bike into the gym for the celebration.”
And I said, “No, sorry, we already discussed this with the coordinator and we are opting out. However, we are very grateful for the bike.”
She said, “Why?”
I explained why.
And she shook her head and made an annoying TSK sound. Guess what we did?
We had our picture taken and we left.
Could I have addressed it? Absolutely. I could have explained myself again. But, you know what?
I DON’T HAVE TO.
And I was tired. And I had been up since 3 AM. And none of these people were going to handle the fallout if I let them bully me into doing what they wanted Kai to do (which I understood was a celebration for their student’s fundraising efforts but not in Kai’s best interest).
So, we let Kai stay on the bike and he rode it out into the empty parking lot while I steered. It was a beautiful, cool, overcast day. Calm and quiet. And our incredible, amazing son spent a half hour riding around while we filmed it for Facebook, live, so that everyone and their grandfather could see his beautiful, amazing face light up while he rode his bike.
And that was a celebration ride on Kai’s terms.
A car trip and a nap soon followed. For Mommy.
Later that evening I received a series of text messages from the Mom that I made friends with at the event. She commented that it had been smart for us to opt out. Because half of the kids (including her own two year old son) were PETRIFIED and had meltdowns. It took a long time for her son to calm down and he spent that time in her lap, shaking, with a pacifier. Had it been our son, he most likely would have thrown himself on the floor, screamed and cried, overwhelmed and unable to function. Frightened beyond belief by the noise, the people and most of all, the high ceiling. And he is a heck of a lot bigger and heavier than her two year-old.
I feel so badly for those kids. And the families who had to deal with the aftermath.
It is our job as special needs parents to look out for number one – our child with special needs. And, sometimes, other people are going to be unhappy with us. It may mean anger, disappointment, sharp words and more coming our way. But when I think about what could have happened and how Kai was able to celebrate on his own terms, it was worth it.
For me, it’s always worth it.
Don’t be afraid to stand up for what your child needs. It is not your job for everyone to like you. You’ve got this.
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!
While I love the idea of Mother’s Day, what I have discovered as a Mom of a special needs child is that I feel tremendously pressured to have a good day. Because some people think that I DESERVE to have one more than most. That my job is HARDER than the average Mom. And so, it becomes VERY important that my day is wonderful.
Having lost my own mother, my best friend, five years ago, has not released the pressure of this holiday for me. If anything, it has made it worse.
I LOVE that the people who love me want me to have a good day, don’t get me wrong. But Mother’s Day is a hard day for me.
If it’s a hard day for you as well, maybe it’s time to set some boundaries on the day. For instance, I HATE eating out on holidays. The food and service is never as good, it’s usually crowded and my amazing son with special needs doesn’t do well with any of that. And, honestly, neither do I. And what’s the first thing everyone wants to do? They want to take me out for brunch. With the kids. A recipe for disaster if there ever was one.
I also don’t really have a need for much in the way of material things. My husband keeps asking me what I want for Mother’s Day. I ADORE that he wants to make sure that I have a good day. And feel P-R-E-S-S-U-R-E to come up with something to want. But, truthfully, I don’t want or need anything specific.
I am incredibly blessed. I am so grateful to be able to say that I don’t really NEED anything.
But…
This doesn’t mean that Mother’s Day can’t be made special and different for me. On the contrary. It just takes getting up some nerve to be able to say what I really want.
Deep breath. OK, here it goes.
I want to nap uninterrupted. I want to eat my husband’s homemade chocolate covered strawberries, chocolate covered pretzels, chocolate covered bananas, chocolate covered everything. With a cup of coffee. I want to cry when I miss my mother throughout the day without having to explain myself. I want my children to draw me pictures.
And then, I want the day to be over.
On another day, maybe we’ll go out and do something. When there is less pressure to be happy.
Maybe you LOVE eating out on Mother’s Day. Or however your family celebrates. But when you are living the special needs life, it is important to be honest and SAY something about how you are feeling about this day that can be filled with situations that cause stress for you while meaning to relax you. If it will be better for you and for your child to stay home or do something different, SPEAK UP.
Wishing you a wonderful Mother’s Day that is exactly what you want it to be. Whatever that is.
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!
While planning our upcoming trip to New York, I am once again amused as I review all of the things to consider when planning a trip with a child with special needs. Of course, it is always a challenge to pack for a trip for ANY family to begin with, and we have to do all of that planning and packing, too. But then, there are the OTHER considerations.
For this trip, we have chosen not to fly from East Texas to New York. We are DRIVING. Now, we have flown to New York before with varying degrees of success (OK, technically, we made it so it was successful, right?). But this time, we decided on autonomy, schedule flexibility and a leisurely pace so that we can sightsee both ways.
Since we are not flying, this removes the stress of worrying about what our son’s behavior will be like on the plane. This includes whether or not he will be bouncing his seat really hard while he stims, which shakes the tray of the person sitting behind him. It also removes the stress of his using his tablet WITHOUT headphones, which can disturb others. It takes away the possibility for the fun repeat of the “diarrhea incident,” on the plane. And, it removes trying to change the diaper of a seven year-old on a plane in general (Once a flight attended offered to let me change him on the floor of the galley area, which was awesome. This was separate from the diarrhea incident.). It eases the stress of endless waiting at the airport, something our son does not prefer (who does?). So all of that is good.
The flip side, is now we are going to spend many, many, many hours in the van. And sightsee. And stay at hotels. And all of this, while enjoyable, has its own trials and tribulations and planning.
I am a born and raised New Yorker and, even so, it can be nerve wracking to take a child with special needs on the subway. It is probably different when your child is high functioning but because our son is low functioning, if we ever got separated, he would not be able to ask for help. Or even give information if someone were to attempt to help him. When he was smaller, we were able to bring him on the subway in his stroller. But he has outgrown it and virtually all strollers for kids. The next size up is adult-sized. For a cool thousand dollars. And this stroller does fold up but it is big and bulky and difficult to get around. We also looked at pull wagons but walking for blocks in the city, pulling something like that behind you, is challenging at best. Today we purchased a wheelchair. Our son is completely mobile. All of his disabilities are neurological. But this seems like the best option for our unique travel needs. Also, because he is low functioning, he has no feelings at all about being in a wheelchair. This may not work for a child who is more aware. But it will work for us, for now. If we decide to take him on the subway, there are very few stops that are wheelchair accessible or have elevators. So, we have to take him out of the wheelchair, fold it up, carry it up while also holding on to him, reset it all back up at the top and put him back into it to continue on. And don’t forget the ever growing, expanding diaper bag backpack. And our nine year-old neurotypical daughter.
Easy? No. Worth it? We think so.
Oh, and hey, let’s talk about what is IN that diaper bag backpack. Diapers and wipes. Guess what? NOWHERE in New York City are there places to change a seven year old who wears diapers. So, a towel. Because we will be changing him in some WEIRD spots. Two changes of clothes. At least. His food, because he will only eat certain things. Spoons. Straws. A sippy cup. Hand sanitizer. A hot spot. A tablet. A back-up tablet for when the first one eventually dies. A charger. Sunscreen. If we are going to a splash pad, another towel. A bathing suit.
Remember, this is JUST to travel out for a day in the city. We haven’t even packed for our family OR the car for the road trip yet.
So, the road trip. We used to bring a playpen or get one at the hotel. But recently we discovered that we can get a twin roll-away bed and now he enjoys sleeping on that. So, there’s one less thing to pack. But, this is assuming every place we stay has that available. Better bring the play pen as a back up, just in case.
We will need to bring three times the amount of clothes for him as the rest of us. Because there are accidents. And also, because our son has this thing he’s been doing with his sippy cup lately that we refer to as a milk bath. Yeah. So, lots of clothes.
Our son likes to play with a certain electronic toy at night in bed before he falls asleep. So, we need to pack that. And the only two books in the world that he will let me read to him. We have to bring those.
Our son likes to sleep with a certain crocheted blanket that is green and white. I bought it at a garage sale. So, we’ll bring that. But that blanket is different from the blanket he likes to use during the day, which I crocheted myself. It’s a big granny square, bulky and rich shades of brown. So, of course, we have to pack that.
Swimming! We will be swimming at the hotels and at my father’s girlfriend’s house in New Jersey. We have the bathing suit and towel but we need the life jacket! Can’t forget to pack that.
Bathing! Our son gets eczema, so we need to bring the Cetaphil body wash and the shampoo and conditioner that doesn’t make him break out.
Door knob locks. Because, you know, doors. We need to pack those.
Extra shoes.
Did you know that at certain amusement parks you now have to show a LETTER FROM A DOCTOR that states that your child has a disability in order to have disability access (Here’s looking at you, Six Flags Great Adventure in New Jersey!)? Have to make sure to get that and pack it. In a place where I can remember where it is. And remember to bring it that day. Grrrr.
We have a t-shirt that we had made with our son’s name, identifying information and our telephone numbers in case he gets lost (our scariest nightmare). We need to pack that. And also, maybe get more of them made.
Remember, I haven’t packed ANYTHING for myself, my husband or my daughter yet.
So how do we do this and still have fun?
We make a list together. Include all MEDICATIONS and things that you cannot easily replace if you forget them first. Include all large items like strollers, car seats, wheelchairs, jtube accessories, oxygen tank stuff, all of that, next. Think about a typical day, step by step and write down everything that your reach for during the day (or actually make this list one day as you use the stuff).
We BOTH make lists separately. If you are caregiving as a team, it is an extremely rewarding use of your time for BOTH of you to write SEPARATE lists and compare them. I can almost guarantee you will both have something that the other one forgot.
We think about what we are planning to do while on a trip. What extra things will your child need to make your fun events successful for them?
We plan to forget SOMETHING. Because we just will.
We make sure that the thing we forget is something that we can replace when out of town. You know what the irreplaceable stuff is. Make a checklist and check it off AS YOU LOAD IT.
We make our trips as flexible as possible. This may mean taking turns going out with our 9 year-old or not going to the fanciest restaurants because our son isn’t ready to sit at a table for as long as that type of meal takes. We’ve eaten those types of meals before and we will again. But not on a family trip; at least not for the foreseeable future.
We set our son up for success when traveling. If we are invited to something when traveling near friends and family and we don’t think our son will do well, we just don’t go. Those folks will just have to understand. Or one of us stays with our son and one of us goes with our daughter. This way part of our group relaxes in a safe feeling environment for our son and part of our group goes out to experience something new.
We bring extra people. If you can, bring more adults with you that have experience caring for your child. Trade off. More people equals more opportunity for different group combinations when traveling.
We dare to do it. Here’s the honest truth – it’s MUCH easier to stay at home. This type of trip takes tons of planning, foreseeing possible pitfalls, problem solving and flexibility. But it’s WORTH IT. It’s worth it to do something new with your child, take them out of their comfort zone (and you, too!) and be a part of the world in a way that maybe they aren’t on a day-to-day basis.
A few more things. Don’t forget to pack for yourself and the rest of the family after all of this. Laugh at your mistakes. And, as my daughter will gleefully remind us every other minute up until the trip, “Mom, can we bring snacks?”
When you have a baby EVERYONE has an opinion on how you should handle them. And they TELL YOU, often whether you want to hear their opinion or not.
They tell you not to let the baby sleep on the stomach. They tell you not to let the baby sleep on the back. The zealous breast feeding patrol comes after you with a vengeance – because if you don’t breast feed you will NEVER have a strong bond (I am two generations into proving this one wrong). You should add an extra layer of clothing when outdoors. Wait – take that extra layer away, the baby will be too hot!
And then they start telling you what you should be doing as a new parent, for yourself.
Go out on a date night, they say. It’ll strengthen your marriage, having had a new baby. Never mind that if you don’t sleep soon you will pass out – you should dress up, go out and RECONNECT with your partner, right now. BUT, don’t leave the baby too soon. They will have separation anxiety. Anxious? Have a glass of wine, it will calm you down. But don’t forget to breast feed!!!
With all of the advice flying around when having a typical child, the pressure to do it “right,” especially with the first baby, can be tremendous. I remember absolutely bawling because my new baby daughter and I could not get breast feeding to work. The breast feeding patrol (all right, the nursing staff and breast feeding specialists but man, are these folks CONVINCED it’s the way to go) worked with us endlessly but the milk just wasn’t coming in and she was starting to actually lose weight in her first 48 hours. I finally switched her to formula and everything worked out just fine. Some people say the bond is not the same but we could not be closer as mother and daughter (same thing happened with me and my mother, by the way). But, I wish someone would have eased my stress by saying it’s not a failure if you can’t make breast feeding work. That formula is OK, too. But no one did.
Moving on in time, I was more than blessed to have a son with special needs. He is now seven years old. And, let me tell you if you want to quiet all of the advice giving and background noise that occurs when you have a typical child, have a child with special needs. Want to really confuse them? Have a child with eight different diagnoses.
For the longest time, all I heard were the proverbial crickets chirping. NO ONE HAD A CLUE.
And then the barage of advice continued, albeit a bit differently.
Instead of sounding confident that their advice was the right thing, their presentation became wary.
“I don’t know if this would work since your child is different, but for my child, this [INSERT ADVICE HERE] worked really well!”
Here’s where both situations have something important in common. They are both background noise in the life that you are creating for yourself. This is NOT to say that advice can’t be valuable or useful. But, especially when living the special needs life, it is extremely important that you CRAFT your life in a way that works for you, your child and your family. People don’t talk about this. CRAFTING your life seems foreign. A whole lot of people live life letting it happen to them. Here’s where you can make a difference for youself.
What kind of life do you want to have? What kind of daily life will make it easier for YOUR particular family situation to not only survive but thrive? Typical families have it far easier in a lot of ways but families with special needs NEED to consider this question carefully.
Do you feel like your daily situation is working for you? Or do you wish your fairy godmother would come in and overhaul everything with a wave of the magic wand?
Or, here’s one a lot of parents can relate to – is there a part of your day that you just dread because EVERY SINGLE DAY it goes wrong and you just can’t bear it anymore? As in, morning is OK, coffee is working, activities go by, everything is fine but you are just DREADING whatever o’clock because almost every single day something happens to set your child with special needs off and you can’t bear the thought of it?
How did I know this about you? Well, let’s just say I’ve been there.
Here’s where CRAFTING your life comes in.
And while the well-wishers mean well and the do-gooders are trying to do good, they don’t really understand, do they? They haven’t walked your walk.
Do yourself a favor. Smile and nod. Tell them that you are SO APPRECIATIVE of their words of wisdom and will definitely take their input into consideration. SMILE. And never think about their input again if you don’t find it valuable.
It is FRUSTRATING when they seem like they know it all about YOUR special needs life, isn’t it? They truly just don’t know. And you have bigger fish to fry than to waste a single second being annoyed at them.
Instead, take that time you would have spent being annoyed and think about this – if you have a specific situation or time period of your day that is JUST NOT WORKING, what can you do to CRAFT it differently? Instead of it happening to you every day, what if you made choices that created a different outcome?
Sometimes this seems impossible. Insurmountable.
It’s not.
I know you are exhausted so creatively problem solving isn’t necessarily your strong suit right now. But you need to do SOMETHING to craft your life because it isn’t going to craft itself. So, try this:
Focus on a small piece of your day. Maybe it is the waking up process. Maybe it’s the lunch making process if you make lunch for you child to take to school (picky eaters, aren’t they?). Maybe it’s bath time.
Isolate the problem. Is it that the mornings are crazy rushed and rushing makes your child with special needs crazy? Make lunch, lay out clothes and bathe the night before. Putting shoes on to go to the bus a battle every single day? Let it go, at least for a while. Maybe the two of you can pick out special character “walking to the bus” slippers and send shoes to school in the backpack. How amazing would that be if being creative and a little flexible like that ends a months-long streak of daily meltdowns?
Make a plan. One that works FOR YOU AND YOUR CHILD. Not necessarily what the people in your life whispering in your ear think would work for THEIR child. They may not agree with how you are going to handle things. They don’t have to. It’s YOUR world.
Execute the plan. Try it out for a couple of days.
Evaluate. How did it go? Is it working? Is your stress easing for that particular time of the day? If yes, keep going! If not, try something new. Keep trying something new until it works.
Then, you take this system and apply it to another part of your day. And another. Until soon, you have CRAFTED your life. It applies to every area, too, not just to raising a child with special needs. Of course, there are things that you will have no control over, that you can’t craft. But there are SO MANY things that you CAN craft. Try it. You’ll see.
“They,” are going to tell you what they think about what you are doing. Because EVERYBODY has an opinion.
Everybody does have an opinion. But not everybody’s opinion matters.
Who’s opinion matters? Yours. Is it working for you and your child? Yes? BOOM!!!!
That’s all that matters.
You’ve got this.
In what way have you crafted your life to make it better for you, your child with special needs and your family? Please share in the comments below.
My son is seven years old and has about eight diagnoses. He is low functioning. Kai goes to an all special needs campus. Even though the law states that schools will have the least restrictive environment (LRE) for students with special needs, Kai will never attend regular public school. And this is the right placement for him. He would not be able to function there.
Having a low functioning child is very different than having a medium or high functioning child with special needs. I have always been aware of that. But, recently I have been involved in several discussions where other special needs caregivers are mourning the fact that from a social perspective, their kids are struggling big time. They are not always included. Other kids are not always kind. They are often not invited to birthday parties or when they have them, few to none of the typical students show up.
Their kids are devastated. The caregivers are talking about how they have moved to only inviting family and very close friends to their own events. But there is not much they can do when their children are excluded by others. Their children feel it deeply. They just want to be liked and fit in, like everyone else.
As I listened to these caregivers, my heart truly went out to them. I have ALWAYS been happy for others that have high functioning children. I have thought of this as a gift, a blessing. But in this case, Kai may actually have the edge.
You see, Kai is completely unaware of the entire situation. He doesn’t care if he gets invited to parties. He doesn’t care if he has his own party. Kai’s needs are very simple. He wants to be in an environment where he feels safe. He wants his tablet. He wants a blanket (or several). He wants to eat his chosen foods on demand (which we let him do; after a year of choking at every meal every day to the point of needing intervention, Kai can eat whenever he wants to). He wants loving when he’s in the mood and to dance when our song comes on. He wants alone time when he’s not feeling social. Kai loves going to school and riding the bus. He loves music and singing. Kai is interested in the occasional book. And that’s pretty much it.
If you want to meet someone who is filled with joy, peace and happiness ninety-something percent of the time, come meet Kai. You are welcome to try to interact with him. But you may or may not get acknowledgement. Because Kai isn’t really interested in meeting you. He’s not NOT interested. It just kind of doesn’t matter to him. He’s too busy being Kai.
And, the more I think about it, the more it WOWS me. Kai will never have to worry about not being included. It will never hurt his feelings to hear about a party he wasn’t invited to.
This is maybe the ONE area where low-functioning might just trump high-functioning.
Because in Kai’s world, there is no party. Not unless the party is him.
