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?”
