Letting My Child Find Her Voice

As a parent of a special needs child, part of our job is to be their voice.

From the time they are infants, we advocate tirelessly for them in doctors’ offices, educational meetings, and therapy appointments.

I’d gotten so used to that role that it threw me for a loop when my daughter started to get upset at a Dr. appointment about a year ago because she didn’t like the fact that I was talking about her when she was sitting right there.

It hit me like a ton of bricks.

I remember that feeling of sitting in appointments with my mother while she and the doctor had a discussion about me, and it wasn’t fun. I remember feeling confused and a little slighted, wondering why he didn’t just ask ME those questions.

So, I made a promise to myself that I would make a point to include her in the discussions during appointments in whatever way I could.

Since she is mostly nonverbal, it has been a challenge and an adjustment trying to find a balance between letting her communicate for herself, and still getting across pertinent information.

She is great with yes/no questions, but the open-ended ones are harder for her to process and answer.

Now when questions about her are directed at me, if I think she is capable of answering, I’ll redirect the question to her. Even if I don’t think she would quite know how to answer, I’ll try not to talk “over” her.

Instead, I’ll try and loop her into the conversation somehow. “I’m just telling the doctor about how well you’re doing on your medicine…remember how you take a little more now than before?”

It has made a huge difference, and I can see that she takes pride in being able to communicate; however she can.

Sometimes she is fine with letting me do the talking, but I have learned to keep a small notepad and pen on hand in case.

As she gets better and better at writing simple sentences, the more she wants to contribute to the conversation.

Many times, she wants to talk about something completely unrelated to the appointment. Many times, she just wants to contribute somehow and be heard.

At her last psychiatrist appointment, she told the doctor all about her recent trip to the Dollar Store and all the cool things she found there.

After she was done, she sat there and contentedly worked on an activity book she had brought while the doctor and I discussed her medication.

It’s definitely not easy, because the “mama bear” in me wants to just jump into the conversation sometimes.

But it’s also amazing to watch her gain that tiny bit of independence and find her voice, because she deserves to be heard.

5 Things to Say if You Want to Annoy a Special Needs Parent

During the past 12 years of parenting special needs children, I have heard a lot of comments from strangers, family, and even friends that want to help, but end up saying things that do the exact opposite.

I won’t go as far as to say that these phrases are offensive because most people really do mean well, but sometimes they way they express their thoughts comes off as judgemental, critical, or patronizing.

So, if you were ever wondering what to NOT to say to a parent of a child with special needs, I have narrowed it down to my five favorites.

  1. 1. “Can’t you just…”

Oh, if only I had a nickel for every time someone has said this to me!

Upon learning of my daughter’s feeding tube, I’ve had people ask, “Can’t you just make her eat?”

When I share how infrequently we are able to go on date nights, I inevitably hear, “Can’t you just get a babysitter?”

The list could go on and on, but the bottom line is, if I “could just,” I “would have” already.

Saying this to someone is presuming they have not already exhausted every avenue trying to solve the problem that you seem to have a “simple solution” for five minutes after meeting them; it’s really patronizing.

  1. 2. “I don’t know how you do it!”

 

It sounds innocent enough, and it’s the most oft-repeated phrase I’ve heard, and I don’t really know how to respond most times.

“I do it because I have to.” sounds like taking care of my kids is a detestable chore, which could not be farther from the truth.

And yet that is the truth; I do it because I don’t have a choice.

Because what is the alternative? Crawl under the covers and hide from the world?

Not an option here.

  1. 3. “You’re a Superwoman”

I know this one is meant to be a compliment, but I honestly think all parents are superheroes in their own ways.

We all struggle with different things; we all have challenges. We all have our strengths and our weaknesses.

When someone calls me a Supermom, I feel like I have to live up to an image I don’t deserve.

  1. 4. “What can they do?”

I get this one a lot when new-to-us people learn that my daughter has autism.

They automatically assume she is some sort of savant, and are disappointed when I tell them otherwise.

She’s a 12-year-old girl with autism and intellectual disabilities.

She has a silly sense of humor, loves the color pink, her trampoline, and music.

And she gives the best hugs, ever. That should be enough. She is enough, just the way she is.

  1.  5. “I’m sorry!”

I’ve heard this one a lot pertaining to my kids’ diagnosis, in particular with my daughter’s autism and intellectual disability.

It often comes with what I refer to as the “pity head tilt” if it’s done face to face.

Even though diagnosis does not define a person, it is part of who they are.

Imagine being the child and people apologizing to your parents for you being – you.

As I said, most people really do mean well when they say most of these things, but if you want to offer support, it’s probably best to steer away from assumptions or unsolicited advice, however well-intentioned it may be.

Most of the time, parents of special needs kids just need a little encouragement and someone to listen.

That, and a great deal of strong coffee!

When a Tantrum is More Than a Tantrum.

The first time I realized my daughter’s tantrum was more than a tantrum was right around the time she was diagnosed with autism.

She was just shy of three years old and was flailing on the floor and kicking, which quickly progressed to banging her head against the wall.

She was in full-blown meltdown.

It’s hard to explain to someone who isn’t familiar with special needs the difference between a tantrum and a meltdown.

When people see (and hear) a screaming child out in public, they tend to assume the child is spoiled, or if it’s a really small child, just plain tired.

I used to be the same way. I worked in retail for years, starting when I was in high school, and I have experienced my fair share of upset kids.

There would be many times where the parents would give in and get them the candy, toy, or balloon they wanted so they could shop in peace. As soon as they got their desired item, the wails would stop.

That is one of the main differences between tantrums and meltdowns. Meltdowns can’t be stopped or pacified with a treat.

Meltdowns are much more intense; once they get going, they reach what I like to call “the point of no return.”

After this, all you can do is remove them from the situation if you can, and try to keep them safe until they calm down.

When my daughter was small, it was easier. All I had to do was scoop her up and carry her, potato sack style over my shoulder and take her away from wherever we were.

Now she is 12 and almost as tall as I am. She is also strong as Hell, and when she reaches the point of no return, things get real. She can be a real danger not just to others, but to herself as well.

Biting, scratching, bolting with no thought as to where she is going; she has zero sense of safety.

A few months ago, I had to physically restrain her before she could run into the bus lane at school during dismissal time.

These public episodes used to be embarrassing. Now, I just go into survival mode and think about it later.

My 8-year-old son’s tantrums are still very much tantrums. He doesn’t like the word “No,” and he makes it known- loudly.

It’s evolved from kicking and screaming on the floor to expressing himself at the top of his lungs as to why he is angry, followed with an indignant “hmmph!” and stomping away.

Five minutes later, he is distracted by something else, and the reason why he was upset to begin with, seems completely forgotten.

Both of these types of outbursts can make me feel like I need an emotional detox…. or a stiff drink. Both require totally different interventions, and we are still learning as we go.

By now I’m past the point of being embarrassed when these things happen in public; I just go into survival mode.

My priority is keeping my child safe and deescalating them as soon as possible, and that leaves no room to worry about what other people are thinking at the moment.

Many times, I’ve resorted to my sarcastic sense of humor to deal with the situation, but sometimes I don’t even have time for that.

I just need to get us out as fast as I can.

The biggest takeaway I have from living this life is never to judge anyone that may be in this situation, ever.

There are a million and one reasons that a kid could be screaming in public, and the last thing the parents need is judgment, and dirty looks directed their way.

While no one can “fix” the situation, a smile goes a long way. So does a few words of encouragement.  It’s amazing how much a few kind words can turn someone’s day around.

Look at His Face

“Look at his face!” the little girl in the waiting area of the doctor’s office exclaimed rather loudly and then started to giggle.

Her mother (or caregiver), who had been checking out of their appointment, mumbled something that sounded like, “Oh. Yeah” and hustled towards the exit with the little girl, who was still looking over her shoulder at my son.

My son, who was happily playing with the toys strewn about the waiting area, completely oblivious to what had just transpired.

In a way, I envied him.

My son has a rare genetic condition called Oto Palatal Digital Syndrome. His facial features are a little different, despite the two traumatic jaw surgeries he has had.

I also have OPD, and so does my 12-year-old daughter. We have had our share of awkward encounters; staring, whispering and pointing.

I have the unique perspective of experiencing this on both ends: not only as someone with a facial difference but as the parent of kids with craniofacial issues as well

Dealing with it as a mom is a lot harder.

The Mama bear instinct in me wants to rage at whoever is poking fun of my child, but the logical part of me sees it as an opportunity to educate.

The mom in the doctor’s office scurried away before I could even say “Hi!”, but I’m not judging her. At best, she may have just been in a hurry.

The worst-case scenario is that she was extremely embarrassed, had no clue what to say, and just wanted to get the Hell out of there.

I totally get it.

My kids have said some mortifying things in public that have made me wish I had the power to make myself invisible.

I too have hurried my child away for fear they would make an already embarrassing situation worse, or simply because I had no idea how to respond.

Then one day when my son was an infant, a little boy approached us at a school event for one of my older kids, and asked rather bluntly (as kids tend to do) “What’s wrong with his face?”

I tried to explain his genetic condition to a five-year-old the best way I knew how, after which he pointed at my son’s tracheostomy tube and asked: “What’s that thing?”

“That’s called a trach. He can’t breathe from his nose and mouth as we can, so this helps him to breathe.”

“Oh. Ok.”

“His name is Chance, and he’s 9 months old.”

This little guy talked to us for a good five minutes before he ran off to join his friends, and I realized that although his approach was no-nonsense, he was genuinely curious and interested.

Now when I catch people staring, I wave and/or say Hello. Sometimes they get embarrassed and look away, but many times it has opened a door for a conversation.

There will always be awkward moments as a parent of a child with special needs.

Along with OPD, my daughter also has autism, and we have had more than our fair share of public meltdowns. Many times, I use humor to deal with stressful situations, and these are no exception.

I’ve led her by the hand, wailing and screaming, through the grocery store singing the theme to “Mr. Rodger’s Neighborhood” loud enough for the people who were staring at us to hear.

“It’s a beautiful day in this neighborhood… It’s a neighborly day in this beauty wood….won’t you be my neighbor..”

Several people chuckled; the ice was broken.

Sometimes it’s hard to hold back because people can say some ignorant and judgemental things.

I still have my moments, but over time the “Mama Bear” instinct has given way to a need to advocate and educate so that when people see someone with a facial difference, they will take the time to learn about and get to know the person and hopefully realize they are not that different after all.

 

Finding Joy in the Mayhem

As any parent of children with special needs knows, every day can bring new challenges and struggles, and there are some days when you consider the fact that you have managed to do the bare minimum a win.

No day is the same, and just when you think you’ve managed to get it all under control, all Hell breaks loose, and a new issue pops up; a massive meltdown at school, a cold for our little guy with chronic lung disease which always puts us on high alert.

Trying to find a specialist that takes our insurance or a mistake on a prescription that results in a series of phone calls that can take up most of the morning.

It would be so easy to fall into a rabbit hole of gloom over the hand that life has dealt, but that’s not how I roll.

I choose not to dwell on the negatives and wallow in self-pity- that does nothing for me, and it certainly does nothing for my kids.

I’m not minimizing the pain and emotion during times of real crisis; I’m speaking of the everyday, routine moments of life that can be extra difficult for those of us with children who have special needs.

Some days are impossibly hard and emotionally draining, but there is always something to be thankful for.

I’ve always been one of those “glass is half-full,” optimistic types.

Don’t get me wrong- I don’t walk around with a smile plastered on my face all the time like everything is all sunshine, rainbows, and unicorns.

It definitely is not easy, but even in the midst of chaos, I can usually find some things to find a little joy from.

A good report from school for my children with challenging behaviors.

No bedtime struggle from my littlest who has bedtime avoidance down to an artform.

Seeing the siblings who quarrel the most sitting side by side quietly, or even playing a video game- together.

No one complaining about what’s for dinner.

Getting stuff checked off a “to-do” list- even if some of the things are tedious tasks.

Getting to drink a whole cup of coffee while it’s still hot.

Remembering the chocolate stashed in the back of the freezer that the kids know nothing about.

A kind word or comment from a friend on social media.

My always on the go eight-year-old sitting still for some extra cuddles.

Watching how focused my daughter is on her workbooks.

These instances and countless others are constant reminders that even though life can be overwhelming and hectic, there is joy to be found in the most ordinary of moments.

The Best Gifts You Can Give.

We have four kids, and over the years, they have gotten countless gifts on Christmas, birthdays, and sometimes randomly from friends and family.

I’ve gotten a lot of questions about gifts since my two special needs kids are hard to buy for. Unless you know them, a lot of things aren’t always appropriate for them, no matter what the age range on the box states.

Drawing from past experience, I have come up with a few suggestions and ideas if ever you are looking to buy a gift for a child with special needs or their family.

Don’t be afraid to ask the parents for suggestions first. I promise this will save you a ton of aggravation and money, and save the parents a lot of frustration as well.

Ask what they like and what they don’t. In the case of many children with developmental delays such as mine, their interests are not always on par with children their own age.

My daughter is 12 and still likes Elmo from Sesame Street.

Consider their abilities.

One year my daughter received a latch hook rug kit. Perfectly suitable for your typical ten-year-old, but not for a kiddo with dexterity issues in her fingers.

She became extremely agitated when she couldn’t handle the hook to make the rug. Sensory issues are also a huge issue when it comes to gifts of clothing.

Many children can’t handle the tags on the neck or certain fabrics.

When in doubt, gift certificates to favorite shops are a great option.

If the child is old enough, they can pick something special on their own. If they’re too young to choose, their parents will know just what to get them!

If you are trying to decide on a gift that the whole family could use, I can tell you from experience that parents with special needs kids are exhausted from the day to day care of their children, so not having to think about what to fix for dinner would be a blessing.

A gift certificate for take-out or food delivery or a homecooked meal will no doubt be much appreciated!

The gift of time or experience is also amazing.

Offer to come and spend some time with the child(ren), so Mom and Dad can have a little respite. Depending on the child’s abilities, tickets to a local event or museum is a different and unique gift that the whole family may enjoy.

The most important thing to remember when buying for a child with special needs is that the more you know about who you are buying for, the better off everyone will be!

If you’re not sure about what to give, take some time to get to know more about the child or family you are buying for.

Sometimes just taking an interest and showing that you care about their child’s needs is gift enough for any special needs parent!

The Gift of Self-Care During the Holidays

The Holiday season can be “a lot.”

A lot of extra activities, a lot of extra lights and noise and crowds in public.

For those of us with kids who have special needs such as sensory issues and anxiety, it can be a stressful time of year.

I used to put a ton of pressure on myself to make the holidays magical for my kids.

One year I planned a day of cookie and gingerbread decorating activities only to have it go haywire.

One kid couldn’t stand the texture of the frosting; one couldn’t stand the taste.

One freaked out because her gingerbread house wouldn’t stay up.

Major whining and frustration tantrums ensued, and I was left in a mess of gingerbread ruins and tears (some of them mine).

I’m pretty sure I had frosting in my hair as well.

I also tried to do the cute holiday photo where all the kids have matching outfits (or at least coordinating colors).

This went over like a lead balloon as my youngest clawed the tag in the back of his cute Christmas sweater and screamed bloody murder every time the photographer came near him.

The closest I ever got was three years ago when I bought all four kids matching pajamas and had them sit on the couch.

All but one is looking everywhere but at the camera, but since no one was crying I called it a win.

We tend to keep close to home during the winter due to cold and flu season, but the rare times we have attempted to take all four kids somewhere, we usually ended up leaving early because one or more would become overwhelmed and meltdown.

A few years ago, I decided to forgo a lot of the extra holiday “stuff”.

Let me tell you; it was glorious.

We still have our moments , but these last few years have been more relaxing without the added pressures of obligations I had taken on when my plate was already full.

The kids are a lot less stressed and anxious with just a few special holiday events instead of a full calendar.

There is much talk of self-care when it comes to parents of kids with special needs.

It is a concept I am totally on board with, but the reality is that it is not always possible to slow down and take a break.

Sometimes I’m lucky if I get five uninterrupted minutes in the bathroom, and the holiday season is no different.

I’ve learned that during the holidays self-care could be just letting go of the Pinterest expectations that I had put on myself and enjoying my kids.

The holidays don’t have to be “magical” to be enjoyed.

Self-care can also be saying “no” to things during the holidays that you know will cause stress and anxiety, even though they may sound fun at first.

Self-care doesn’t necessarily mean getting pampered at the spa (although that is nice too!).

It can mean caring for your mental well-being by reducing stress and slowing down.

Sometimes the best gift we can give ourselves is the gift of grace. Letting go of some expectations and  being present in the moment.

Not feeling guilty for checking off every single thing on your to-do list.

Holiday Traditions are Important, No Matter How Simple

When I was young there were a few holiday traditions that I looked forward to every year; the annual extended family Christmas party, driving around trying to find the best light displays and getting to open one present on Christmas Eve.

When I was a teen with a part-time job that required me to work weekends and some holidays, finding great light displays and being home on Christmas Eve got put on the back burner.

The family parties grew smaller and more infrequent as the cousins grew older and started their own families.

Even though the consistency of those traditions ebbed and flowed, the memories never faded, and I promised myself I would do similar things with my own kids when the time came.

Fast forward a couple of decades, and life is a whole lot different than I ever could have imagined.

Having two children with a myriad of special needs between them causes you to reevaluate the definition of normal and adjust accordingly.

Holiday traditions are no exception.

We may not be able to do the huge family parties for fear of overstimulation and meltdowns, but the kids get to open one present on Christmas Eve as I used to.

And now that they are old enough to appreciate pretty light displays, we have done a couple of test cruises around town, with their favorite Christmas music playing on the car radio.

So far, so good.

Traditions help us bond as a family and give the kids a sense of security and something to look forward to.

Our Christmas tree goes up the day after Thanksgiving every year; they know this and start asking about it sometime around Halloween.

We also have a snowman Christmas countdown calendar that has become a fixture of our holiday décor.

Starting December 1st, the snowman’s nose gets moved each night before bed without fail.

As the kids are getting older, we are testing the waters with new traditions.

Having a child with chronic lung disease means that there is only so much we can do out in the community during the cold and flu season, so we try and find things we can do at home.

We attempted a holiday movie marathon.

The kids lasted about an hour, right about the time the popcorn ran out.

Admittedly, I nodded off on my couch myself. It’s a trial and error process, but I love the memories that we are creating as we try.

When the Children’s Surgery Center Feels Like a Second Home

I sit here in this familiar room, with the brown plastic couches, and windows that look over the busy street below. A T.V monitor situated near the ceiling displays the statues of the little patients behind the big double doors. Patient # 20193, my daughter, is still in the OR.

It is the Children’s Surgery Center at UC Davis in Sacramento, California, and it is a place I know well.

My twelve-year-old daughter Lilly and her seven-year-old brother Chance have had no less than fifteen surgeries between them, and I have sat in this waiting area too many times than I care to count.

I have told too many jokes about how the hospital should implement a frequent flyer program for patients, that they should install a mini bar in the waiting room to take the edge off of the waiting, and how this place is beginning to feel like a second home.

Waiting for your child to come out of surgery is mentally and emotionally exhausting.

I usually travel alone with whichever kid is having a procedure and stay the duration while my husband stays home with our other three kids.

As much as I hate leaving them behind, I need that quiet time to process while sitting in the waiting room, and whichever child is having surgery will need undivided attention afterward.

I usually bring my laptop with me. I fool myself into thinking I’ll get some work done, but I end up indulging in mindless TV on Netflix or Hulu because that is about all my brain can handle right now.

Many have asked me how I can do it.

“I’d be a wreck!” is a common response when I tell someone I am headed down for surgery for one of the kids by myself, especially since the Children’s Surgery Center is over  two hours away from where we live.

I think back to 2015 when both Lilly and Chance underwent major jaw surgery on the same day.

Their ENT doctor, who has done the bulk of their procedures over the years, spent over twelve hours operating on my babies that day.

That was a rare occasion when the whole family went down, and that next week was a blur of going back and forth between the hospital and the hotel next door, my husband and I and our other two boys switching off staying with Lilly and Chance.

Trying to make sure Lilly and Chance were comfortable. Trying to make time for their brothers, Henry and Byron.

Trying to squeeze in a shower and a nap after staying with the kids in the hospital. Trying to navigate the hospital cafeteria with two growing boys who are endlessly hungry.

Compared to the craziness of that week, taking one kid down for surgery by myself almost seems like a piece of cake now.

Despite the circumstances, there is comfort in consistency. I could walk these halls blindfolded. I know where the good seats in the waiting room are- the ones near the electrical outlets and room to stretch.

I know many of the faces behind double doors; many have watched my kids grow up and take the time to come and say “Hi” even if they are not assigned to their case that day. I know my babies are in good hands.

If we have to be frequent flyers in this place, you couldn’t ask for better than that.