Special needs parenting: No Easy Choices

It’s been approximately one year and one month since two of my kids stepped foot in a classroom.

When schools closed and transitioned to virtual learning last Spring, like everyone else I thought it was temporary.

Then two weeks turned into two months, and they finished out the year online.

When school started last August, most schools in our area opted to go in person- either a full five days or a hybrid schedule with all precautions in place.

We live in a rural area in Northern California that hasn’t felt the impact of COVID-19 as much as the bigger cities like San Francisco and Los Angeles.

While we opted to send two of our boys back to in-person classes, we decided not to send our son and daughter with special needs.

They both have a higher risk of complications should they catch the virus, and the schools’ quarantine policies made it uncertain that even if they did go back, they’d be back for long.

Even if they weren’t so high risk, the guaranteed inconsistency would do them more harm than good, since they thrive on routine and structure.

This past year we’ve had them both on independent study, where they complete weekly work packets and have speech therapy and DHH (deaf and hard of hearing) services online.

I’ve learned a lot about myself and my kids, their learning styles, what their strengths and weaknesses are, and forced myself to think outside the box on many occasions.

When they first started with learning at home, I tried to replicate a school setting- a specific place for them to do their work and a set schedule for them to work through each day. That went out the window by week two.

I found out through trial and error that my son works best with little chunks of work at a time, with active breaks in between.

I also learned that he’s a very hands- on, tactile learner.

He’s spent hours trying to recreate things after learning about them.

This past week it was a spaceship built out of a cardboard box after reading about astronauts.

My daughter on the other hand will work through an entire packet in one sitting, but not when she’s told to work on it.

After hours of reminders, nagging, and even bribing one day I had just about given up on her getting any work done that day when she decided at 7 p.m. that she was ready to do it.

It took her two hours- beyond the time when she should have been getting ready for bed, but I learned a lesson that day in picking my battles.

With this school year coming to a close, I have no idea what’s in store for next year.

I’ve been waffling back and forth between sending them back when I feel like it’s safe and keeping them home indefinitely because they’ve been thriving with learning at home.

The one thing I do know is that whatever choice I make won’t be easy.

Special needs parenting: Your Mental Health Matters

May is Mental Health Awareness Month in the United States, and it’s essential for families of children with special needs to be aware of caregiver burnout and how to prevent it.

Parenting is challenging enough, but parents and caregivers of children with special needs deal with an added layer of stress.

Sometimes several layers.

Caring for a child with special needs is often equivalent to a full-time or more because many require round-the-clock care.

Parents of children with special needs are extremely prone to caregiver burnout.

I’ve been there, done that.

Several years ago, I found myself sobbing in a doctor’s office after the stress had taken its toll.

I’d had back-to-back illnesses for several months while caring for two kids with multiple complex medical and behavioral issues.

The physical and mental health consequences of chronic stress-related to raising kids with additional needs are real.

Depression, anxiety, sleep issues, chronic fatigue, and relationship problems are just a few of the issues that can lead to caregiver burnout if they go untreated.

One of the issues that parents of children with special needs have- and I am guilty of this myself- is that they feel like they should be able to do it all.

No one knows our kids as well as we do, and if you’re like me, it’s rare that you find someone you can trust completely with their care.

Unfortunately, when this happens, basic self-care gets put on the back burner.

A good night’s sleep, staying well fed and hydrated, and getting enough exercise is often unheard of when caring for medically complex kids, much less getting to spend time away with your spouse or a night out with friends.

Isolation and exhaustion are common in families who have children with special needs, and even more so if they don’t have a local support system.

Even with local support, many people are also afraid to ask for help when they need it.

I’ve found that many people genuinely want to help but may be unsure of what exactly is needed.

Asking for help with specific things makes it easier for family and friends to pitch in when you need it.

The saying is true- you can’t pour from an empty cup.

Sometimes it’s easier said than done but finding just a little chunk of time each day to do something you enjoy, or that’s just for you can go a long way.

Parent shaming within the Special Needs Community

Parent shaming is nothing new.

I’ve been experiencing it on and offline since I became a mom almost seventeen years ago.

Somehow I was naïve enough to think the special needs community was immune to this type of behavior, but I was proven wrong within the first year of my daughter being born.

Not only do we get unsolicited advice and criticism from family, friends, and strangers- it can also come from within our own circles of special needs families, and it includes anything from passive-aggressive insults to straight-up rude comments.

Some of the arguments are the same ones that have been going on for years: cloth diapers or disposable; organic vs. nonorganic: bottle vs. breastfeeding…but many are specific to parenting children with special needs, and everything from sleep issues to tube feeding seems to be fair game.

My 14-year-old daughter has a feeding tube, and my 10-year-old son had one until he was almost three.

I’ve had people criticize the choice of supplemental nutrition my daughter receives and shame me for not doing a blended whole food diet.

We’ve tried the blended whole food diet, and it made her reflux even worse.

Behaviors are another thing that parents of children with special needs often get judged and criticized over. When people see a child having a meltdown, I’ve heard comments like:

Maybe if you fed them the XYZ diet

Perhaps if they didn’t have so much screen time

Maybe they shouldn’t take them out if they’re going to act like that.

And people wonder why parents of special needs kids tend to isolate.

It’s bad enough that we have to hear this stuff from random people, but it really cuts to the core when it’s from one of our own.

Most children with special needs receive some type of therapy, whether it be speech, occupational, physical, or behavioral therapy.

Behavioral therapy has always been a contentious issue.

People seem to either love ABA therapy or hate it and label it as abuse. Full disclaimer- my daughter has been through ABA therapy, and while it didn’t help her as much as I’ve heard about it helping others, it wasn’t a terrible experience for us.

But we’re only one case, and everyone is different, so if someone tells me they had an awful experience, I’ll believe them because, like all therapies- it’s not for everyone.

There are also assumptions made that if you’re not spending thousands of dollars on private therapies, then you’re not doing right by your child.

If someone can afford to spend that kind of money- more power to them.

My son’s respiratory issues (he has chronic lung disease) have also come under fire.

Maybe if you didn’t keep vaccinating him (no, I’m not joking- this was actually said to me online)

Maybe if you had breastfed or pumped longer

Perhaps if he weren’t on so many medications

The problem with these criticisms and judgment within the special needs community is that it creates a toxic environment among families that need more support than most.

Our lives are challenging enough without being afraid of judgment from people in our own circles.

In the world of special needs parenting, I’ve come to realize that there is no “right way or wrong way” when it comes to many aspects of our life.

When you feel the need to criticize someone on their parenting choice, try to remember that that person may be in survival mode and just trying to make it through another day.

The Wanderer

April is Autism Awareness Month, and for those of us who have kids on the spectrum, there is a term that we’re all too familiar with- eloping.

Eloping means wandering off, bolting, escaping, or running away.

I’ve always disliked that term because I associate “eloping” with getting married, which is a joyful and happy occasion.

There is nothing joyful or happy about this type of behavior.

Eloping isn’t exclusive to kids on the spectrum, but it seems to be especially prevalent in children with autism.

Our daughter Lilly is no exception- she’s a wanderer.

Children and adults who engage in this behavior will wander off or bolt for a variety of reasons; seeking out a preferred place, trying to avoid something that makes them anxious or uncomfortable, or they may run off spontaneously during a meltdown.

When you have a child with a tendency to wander, you’re in a constant state of hypervigilance.

Whenever we go somewhere unfamiliar, I’m constantly scoping out our surroundings for dangerous areas such as busy streets or water bodies.

I plan ahead as much as I can, looking at the location’s website and checking out the area on Google streets.

Lilly has attempted to escape from our home numerous times, and so far, our trusty chain locks have stopped her from getting too far.

Outside the house, it’s stressful.

After an incident when we were vacationing at a relative’s home where she wandered down their steep driveway to a busy street below, I always make sure she is in arm’s reach when we’re at someone else’s home.

Now, at the age of 14, she doesn’t always like that, but until I can be sure she’s not going to be tempted to wander or run off, that’s how it has to be.

I have read countless news stories about autistic children wandering off, and the outcomes are often tragic.

My heart breaks a little each time because I know how easily that could have been our child.

In the wake of stories like this, there’s a tendency to blame the parents.

“Why weren’t they watching their child?”

“How can a parent be so negligent?”

“I would never let that happen to my child. I always know where they are!”

I can tell you that the day Lilly walked off while we were on vacation, there were at least three adults present within feet of her, and she still managed to quickly and quietly slip away.

It can happen to anyone, anywhere, anytime.

No one is immune, and realistically you can’t have eyes on your child 24/7 unless you plan to bring them with you every time you go to the bathroom or take a shower.

If you have a child who’s inclined to wander, creating awareness is one of the best things you can do to keep them safe.

Give your neighbors a heads-up, as well as the police.

Educate everyone you know who might be around your child for any length of time because in cases like these, it takes a village.

Pandemic fatigue is exhausting

It’s been a year since the world started shutting down due to COVID-19.

A year of missing out on experiences and feeling isolated- or if you’re the parent of a medically fragile child- more isolated than usual.

With our newfound pandemic lifestyle comes frustration, exhaustion, and other struggles that are unique to each person.

If you’re feeling “over it” when it comes to masks and other safety protocols at this point, even though it may be essential for your family to follow them- you’re not alone.

Pandemic fatigue is a thing, and it’s exhausting.

With cases slowing down in many areas and the uptick of vaccinations, there does seem to be a tiny sliver of light at the end of the tunnel, but it’s still difficult.

Last Spring, we didn’t have a clue of what was to come.

Two weeks turned into months, and before we knew it, the new year was upon us, and not much had changed.

Since we have to be more careful than most because of our ten-year-old’s chronic lung disease, we had rarely left the house since the stay-at-home orders took effect last March.

We got most of our groceries delivered or did curbside pickup to avoid any crowds.

We kept all four of our kids home- they did their socializing virtually for months.

There are many elements of pandemic fatigue that create the perfect storm of exhaustion and impatience, and by the beginning of last summer, the kids were feeling it big time.

It’s hard spending so many waking hours with the same people.

With fewer options for personal space and pursuing individual interests, tension built up quickly.

With no virtual classroom to occupy them during the day, they were bored and lonely.

Working from home became more challenging.

It’s painful being in the position where you have to choose between your child’s mental and physical health.

If we let our two older boys socialize outside the house, it meant they ran the risk of bringing COVID home to their little brother.

If we didn’t, their mental health could suffer more than it already was.

We could already see the effects on our oldest teenager.

We decided to let them hang out with a small group of friends here and there as long as everyone took precautions.

It turned out to be a good decision; their attitude and emotional well-being improved drastically after spending some time with someone other than us for a couple of hours.

The pandemic has taken an emotional toll on everyone, and everyone copes in their own way.

We’re always going to worry about bringing germs home- that’s the nature of living with someone with compromised lungs.

As much as we’d like to keep him in a bubble, that’s not realistic.

The potential danger of COVID is genuine, but so are the effects on mental health while mitigating it.

You just have to find the right balance of what works for your family while keeping everyone as safe as possible.

10 Things that parents of kids with Special Needs wish you knew

Raising a child- or children with special needs is often a lonely journey.

Unless you’ve experienced parenting a child with disabilities yourself, it’s hard to understand what families like ours go through daily.

For people on the outside looking in, it’s often confusing.

They’re afraid of saying or doing the wrong things or just don’t know how best to support the family.

We don’t expect everyone to be mind readers, but there are some things that families like mine wish people knew about us.

  1. We’re not superhuman.

As much as we’d love to think we have it all together and are even flattered by this assumption, the truth is that we’re just regular people who have been dealt some extra parenting challenges.

We have good days and bad days. I promise we don’t have a secret stash of capes in our closet!

  1. We don’t want our kids to be used to make people feel better about themselves.

We love it when people acknowledge our kids and want to be around them, but we don’t love it when done for the wrong reasons.

We want people to be around our kids because they genuinely want to be around them, not because they think they’re doing them some kind of favor or want to make themselves look good.

  1. We’re not living in fear.

We’ve heard this one a lot this past year during the pandemic. We’re not living in fear; we’re living in reality.

Our reality is that COVID-19 could do some severe damage to our ten-year-old with chronic lung disease. It could be deadly for him.

Taking extra precautions, wearing masks in public, and laying low even more than usual isn’t us living in fear- it’s us trying to keep our son out of the hospital at all costs.

  1. Words matter.

We know most people are only joking when they throw the “R” word around, and they don’t mean any intentional harm, but as a parent to a child with an intellectual disability, it cuts to the core.

It’s derogatory and offensive, even when it’s used in jest.

  1. We still like to be included.

When you have multiple kids with special needs, you end up declining a lot of invites.

Eventually, people stop inviting you. It’s understandable, but it also hurts.

We’re still here and like to know that we haven’t been forgotten.

  1. We need your help teaching your kids about inclusion.

Kindness and tolerance of people who are different is a learned behavior.

We don’t mind educating people who have questions – even blunt questions from the younger kids, but when you hurry your kids away from ours and teach them that it’s ok to be afraid or poke fun at them, you’re sending a really inappropriate message.

  1. We don’t have the time to chase you.

Relationships evolve and change, but if you’ve drifted away and made no effort to keep in contact after a couple of outreaches on our part-the ball is now in your court.

We don’t have time to chase people who aren’t interested in keeping in touch.

  1. We’re terrible at asking for help.

We don’t expect people to go out of their way to help us, but we’re so grateful when they offer.

Sometimes during a medical crisis, we don’t even know what we need until someone drops off or delivers a meal or does some everyday tasks that we’ve completely forgotten about.

  1. We don’t need you to fix things; just listen.

Sometimes we just need to vent. We aren’t asking for solutions or unsolicited advice- we just need someone to listen to us with a non-judgmental ear. 

  1. Our child’s diagnosis doesn’t define them.

Our kids have many diagnoses, but we don’t want them to be known as “the girl with autism” or “ the kid with the trach.” It may be part of who they are, but it’s not all they are.

They’re just two kids who happen to have more challenges than most, and like everyone else, want to be accepted for who they are.

Snow Days and Sensory Issues

Earlier this month, we got a snowstorm.

Not a big deal for most of the country, but in our little corner of Northern California, it’s almost unheard of.

It rarely snows in the wintertime here, and if it does, it usually changes to rain before any snow has a chance to accumulate.

This time we got a full 8 inches of snow, and while my three boys were more than happy to go outside and play in it, my daughter wanted nothing to do with it.

She’s 14, on the autism spectrum, and has many sensory issues.

She lasted about five minutes outside, and most of that five minutes were spent trying to get fresh snowflakes off of her mittens.

She also wasn’t digging the way the snow felt when she tried to walk in it.

She walked over it like she was walking on hot coals, even though she had boots on.

No amount of coaxing offers to build a snow fort-not even comparisons of the wintery scene to one of her favorite movies- Frozen- could change her mind.

She couldn’t get back inside fast enough.

Aside from the sensory stuff, she was a little jarred about how different everything looked, covered under a blanket of snow.

She kept pointing out the window, and I reassured her that it would start to melt when the sun came out.

I didn’t even think about snow being a challenge for her before this snowstorm because it’s not something we have to deal with very often.

I never realized how many sensory challenges come along with winter weather.

I grew up in New England, where snow was a regular occurrence, and I remember all the layers of clothes, the itchy wool hats, and the heavy boots lined with plastic bags so our feet would stay dry.

The scarves covering half of our faces and the bulky gloves and mittens we wore that inevitably would get soaked within ten minutes of playing outside.

I can see now how any of those would be a nightmare for a kid with sensory processing issues, so I went online and searched for some tips to make snow days more enjoyable for kids with sensory issues.

I found some good ideas such as:

Letting your child pick out some winter clothes, and get them used to wearing them before winter actually hits.

Check out online stores that specialize in sensory-friendly clothing.

Help prepare them by reading lots of stories about winter activities.

Before the snow melted, I was able to implement one suggestion of inside sensory play with snow. I scooped some up in a bowl and let her play with it at the table.

She played with it until it started to melt, which I’m considering a win!

Now, hopefully, it won’t be several years before we see some good snow again!

Adventures in Tube Feeding

During the week of February 8-12, 2021, The 11th annual Feeding Tube Awareness Week® will be celebrated globally.

We’ve been a tube feeding family for over fourteen years.

Two of our kids, Lilly and Chance, came home from the Neonatal Intensive Care Unit with G -tubes.

Chance was able to have his removed when he was three years old, and Lilly still has hers.

The decision to place a feeding tube was not easy, but it has been a lifesaving one, and both kids have thrived since.

I have had people ask me, “Why can’t you just make her eat?” of my now 14-year-old daughter.

Like it’s that simple.

I can’t tell you how much time I spent in the NICU at UC Davis, trying to bottle feed her.

I watched her gasp and sputter and writhe as I tried to get her to take even a couple of ounces.

I watched her vomit so much that she started losing weight, and I watched them try formula after formula, seeing if one would “do the trick.”

The same thing happened with my Chance, who is now ten.

We have gotten some stares when we have had to feed the kids in public, although I have to say we have not had any nasty comments or negative reactions that I have heard about from other parents of tube feeders- we have been lucky in that regard!

After Lilly was born, life as we knew it turned upside down.

When my oldest was a baby, it was relatively easy to go anywhere with him.

Just pack a diaper bag, a few toys, and you’re good to go.

Traveling anywhere with a tube-fed child requires extra planning, but it’s far from impossible.

We can’t exactly be spontaneous anymore, but we do get to have some adventures!

Before Chance was born, we took a cross-country road trip with our (then) three kids to Massachusetts for a family reunion.

That trip took months of planning, but it was well worth it.

I can only speak to our situation, but I would estimate that when Lilly and Chance were both tube fed, the feedings took 13-14 out of 24 hours each day.

There’s also food preparation, G-tube cleaning, venting (a method of “burping”), and administering medication if needed.

Tiny backpacks made for feeding pumps made it possible to feed on the go, but we could never let them out of our sight because one of their favorite things to do was unhook themselves from the pumps.

No matter what we tried, they still managed to do it or make a great attempt.

Chance has always been interested in eating- even when he was one hundred percent tube fed.

He would chew on clothes, “chewies” that he got from his occupational therapist, and would try and grab food out of our hands all the time.

Lilly was the complete opposite.

She wanted nothing to do with food and turned her face away at any offers of food.

We also tried a blended diet with her, and she didn’t respond well to it.

Finally, when she was about seven years old, she started drinking out of a sippy cup.

Now, at age 14, she is taking small bites of soft food here and there.

She may never be able to eat fully solid food because of the anatomy of her jaw; she is unable to chew solids well enough to break them down to swallow.

Every time she’s tried to eat anything more solid than yogurt, she ends up choking on it.

Every tube-fed child or adult has their own story.

Another question that I have heard often is, “How long will she have to have the tube.”

No one can answer that definitively.

It depends on the person and the person’s condition.

I have two kids with the same condition, and one was able to have his feeding tube removed early on and now eats more than his two older brothers combined.

The other will most likely have hers for life.

Tube feeding has been part of our life for so long that it’s our “normal” now.

Lilly doesn’t know life without her feeding tube, and Chance doesn’t remember life with his.

All he has to remind him now is the little scar that he calls his “other belly button.”

Education Regression During the Pandemic: The Struggle is Real

It’s been almost one year since COVID-19 turned everyone’s world upside down.

The schools in Northern California closed mid-March, and many didn’t re-open until August at the beginning of the 2020=2021 school year.

Some remained closed for weeks after that due to rising case numbers in late summer.

Our 14-year-old daughter and 10-year-old son both have significant disabilities and haven’t been back in a classroom since last Spring, and it’s doubtful that they will return anytime soon.

Not because the schools are still closed, but because case numbers are still high, and they are both in the high-risk category.

Because of their ages, a vaccine won’t be available for quite some time.

We knew there was the possibility of some learning regression, but man, is it hard…

It sucks having to sacrifice any of your child’s educational progress because the alternative is the risk of getting a virus that could be deadly for them, especially our son with chronic lung disease.

Even with all the support the school can give us, we’ve still seen some backsliding and an overall lack of enthusiasm when it comes to doing school work.

We try to mix it up and find new ways to keep them engaged.

Sometimes it works, sometimes it doesn’t.

We learned by trial and error that virtual learning doesn’t work for students like my kids, one of whom is non-verbal and another who has trouble focusing and has trouble keeping up in the online class meetings.

We switched to paper packets, which they complete and turn in each week, and even though it’s a lot less stressful than the virtual classes, it has its challenges.

In the absence of any classroom time- even virtual classes, I’ve taken on the role of special education teacher, and it can be overwhelming.

On days like these, I’ve learned it’s ok to stop the schoolwork for a while and do something fun or relaxing and return to it later.

There are a lot of days when we just read a lot or play spelling games.

On days like these, I keep reminding myself that it will work out.

They’ll get back on track eventually, and we all need a little grace during these strange times.