My favorite day of the week

We read a book in our house called, “I Had a Favorite Dress.” It’s about a little girl whose creative mom helps her modify a favorite dress as it becomes too small, torn, and wrong for the season.

All my kids love this book, and are visibly happy when the girl sees the new incarnation of her favorite clothing.

I’m not attached to clothes, but I get attached to routines. So, I have a favorite day of the week instead.

Currently my favorite day is Thursday; it tends to be full of errands, but after school we have movie and pizza night, where we lay about as a family and just enjoy each others’ company.

About a year ago, I loathed Thursdays. They became the only day my son could see his OT, and it was at a very awkward time of day.

My son had to attend school for a half day, then, at lunch time, muddle through an hour of intense therapy work. While he was hungry. And already worn out from school.

Not to mention I had an 18 month old little sister in tow. You can imagine how much fun these days were.

Back then, Mondays were my favorite day, because it meant older kids going back to class after a weekend of busyness, household chores would be done during the morning, and I could get everything back on track.

In fact, all the other days were fine, too. It was just that awful Thursday, looming over the week, filling me with dread.

I tried my best to be hopeful and helpful to my son on those days, so he could have some success.

Unfortunately, most Thursdays ended up a wash. Disappointment and grief would come to me as well, in thinking another week had gone by without good OT practice, that I was failing my son for not being able to help him more on those days.

It was rough.

What I needed to do was adapt, like the mom does in the dress book.

When the dress shrinks, it’s made into a shirt. When it rips, it becomes a scarf. When all but shreds are left, mom crafts it into a hair bow.

Adapt, adapt, adapt. That’s what a special needs parent must do.

A lot has changed since those awful Thursdays.

My son started preschool, and the bulk of his therapy is done in a fun classroom, with friendly peers, in the morning when his concentration is at its best.

We took a break from outside therapy because – let’s face it – it just wasn’t working for us.

We moved into a house, which provides more space to do therapy at home, and my son is having great success.

We’ve adapted, I’ve learned, and my kids are happier. Any day that comes together is my favorite.

When you Lose an Advocate

Nearly two years ago, I lost my dad. He was not very old, only nearing 70, and suffered a brain aneurysm that was fatal.

My parents had just visited two weeks’ prior, so I am grateful for having seen him so recently, and having a goodbye of sorts.

This didn’t make losing him any easier, but softened the blow.

Over two years I have learned to reach out to others and talk about the pain of loss.

I’ve found my role as a special needs mom prepared me for this; I understood having something very important taken away suddenly and unexpectedly, as my son suffered a brain injury during labor and has cerebral palsy as a result.

That one medical incident forever changed his life, mine and his father’s, his siblings’ and others’.

In moments, something was taken from him (being a neurotypical child) that can never be returned. It was a loss I felt deeply and struggled to accept.

My dad’s passing was earth-shattering for me, but I was able to cope with it, I believe, much better than I would have without my son’s experience.

What I wasn’t prepared for was the waves of grief that came when I first realized my dad had been a huge supporter and advocate for my son.

The first time I realized this was when a casual thought passed through my mind about Henry’s (my son) change from a crib to a bigger bed.

Oh, I remembered, my dad said he’d help me design one. Cue the sobbing.

For months afterward, just looking at Henry’s crib would produce this effect.

Even talking to friends about making Henry’s bed would prove too much to handle.

My dad – also named Henry, like his father before him – loved my little Henry so much.

He loved all my children so much, from the very start of each of their lives.

What made my dad’s grandpa love so wonderful was that it wasn’t specially bestowed on any of my kids; he loved them all the same, wanted to know and nurture them as individuals, and help makes their lives richer in any way possible.

He was the kind of grandpa to get right down on the floor and play with them.

Where Henry expressed apprehension as a baby with other adults, my dad was an exception.

He’d make funny faces at Henry and never shied away from helping him with physical tasks – although he’d always ask first if Henry wanted help.

That’s a big deal to me; I much prefer people ask my son if he wants help than automatically doing things for him.

My dad always talked about my son to his colleagues and friends also.

My son was as much a presence in their lives as my father was, which is remarkable considering most of them never even met my son.

When we needed help paying Henry’s medical bills, my dad circulated a funding campaign and donations came pouring in.

During March, or whenever something concerning CP came up in the news, my dad made a point to post articles on his social media and ask me questions. He put CP in front of other people, gave them solid information, and always spoke positively of my son (and me, for that matter).

Losing my dad felt like a crushing blow, not only to me but to my children.

I’m sad for my dad who won’t see Henry and his sisters accomplish so much, do so much, be so much of who they are. And I’m sad for my kids that they won’t have grandpa cheering them along the way.

Even writing this, it’s almost too overwhelming to think about without tears.

However, I am so very thankful for his advocacy and the legacy of it.

If he has inspired one other person to think about physical disabilities, cognitive conditions and the real people behind those labels, he has done my son a great service.

To my dad – we love and miss you, and will carry on your advocacy in your absence, to honor you.


Putting it together

Time spent with siblings is so precious; have I been overthinking it?

I’m one of those people who always feels the need to do something. I want to go somewhere, see something, make something.

Sometimes it’s a blessing, sometimes a curse.

Do my kids and I have lot of fun, outside-the-home experiences? We do! Parks, the lake, museums, friends’ houses, even camping – we do a lot.

My kids have taken on my “get out there and try it” attitude, and having a disabled family member hasn’t changed that much either.

Trips require more planning, so we can’t be nearly as spontaneous as before my son entered the picture, but we still get up and go plenty.

The problem is when the kids feel like being homebodies. I can’t stand it. I’m restless and I want to get somewhere, at least outside.

Chalk it up to being a mom of four whose primary work occurs within my house. I’m. Home. A. Lot.

Naturally, I crave social interaction, and something else to think about other than my ABCs and 123s.

Alas, mom’s needs be darned, the children outnumber me and so we are often home.

That is fine, except regularly I don’t have a clue what to do with them.

Does that sound odd? I have had four kids; I should know how to play with them by now. And with the younger two, I do.

Toddler play is simple and can be adapted for my motor impaired son. It’s my older girls I struggle with finding something they both can engage with, and since one-on-one time occurs with them less often I feel guilty about this.

For a neurotypical family this isn’t a big deal.

The kids can play by themselves, they can figure it out, there will be plenty of other times for us to play, etc. B

ut in a special needs family, the thing is that you don’t have those “plenty of other times” to play with the other siblings.

You have time allotted for Your special needs child, then the leftovers for the rest of them. Why is this?

The special needs child, by definition, requires more time and attention to accomplish the same tasks (or even play) as his neurotypical peers.

Mom’s Time spent with siblings may be rare and, therefore, precious.

It certainly is for me. I miss the days when it was me and my oldest girls alone, having tea parties and playing dress up.

I love my son to bits, no question, but there was also a disconnect that occurred from his sisters when he was born.

I had much less time with my then 4 and 2 year olds, and that hasn’t really been rectified in the following four years.

If anything, it’s become more challenging to find that time with them, let alone finding those special activities.

I realized recently: I’ve been overthinking it (I am prone to do this). Instead of going special and spectacular and outside-the-box, I went inside it.

A puzzle box, that is. I found a couple beautiful puzzles at a thrift store and asked them to join me during nap time one day to complete it.

But, I wondered, would they think it was too simple? Too boring? Too hard?

To my surprise and delight, they reacted the opposite. They loved it!

We made hot cocoa and chatted while we parsed out edges, and slowly worked our way toward completing small sections.

We celebrated when someone picked a piece out and immediately found the right place for it.

My girls freely shared about friends at school and other small things they had on their minds. We had two hours of uninterrupted mom-daughter time that turned out to be so precious.

We have continued our puzzle ritual for a couple months, and it’s been fun finding time to work on them together.

If we can’t complete one in a sitting, we just walk away and look forward to the next session.

There’s been an unintended consequence also: I have learned to slow down and not overthink my relationship with them.

I feel like I’m starting to put it together, and I couldn’t be happier.

A rock and a hard place

After a year long reprieve from the worry of seizures, the worst has happened – my son had another one.

Henry’s seizures are particularly strong tonic clonic, radiating from his eye down to his toes over twenty minutes or so.

They are excruciating to watch; I can’t imagine how it feels on his end.

I do know that, with his rescue med administered, his seizure subsides but the effects of the medicine knock him out for twelve hours or so, and he isn’t back to his normal personality until the following day.

So now the question comes to me, should I start him on regular, daily medicine, or continue with a rescue med only? I’m stuck between a rock and a hard place, and it’s not a fun place to be.

Sometimes, the decisions we make for our children are easier to navigate through.

Often, this depends on the possible outcomes; when either choice will lead to a positive result, deciding when or how to do something is simple. But there are so many times when the outcome could go either way – should we choose private school or public?

Should we move to a new place or stay where we are? Is this friend a good fit for my child, or should I steer them toward another playmate?

The deciding can be overwhelming. I can’t predict the future, so how can I know what to do?

Well, we can’t, obviously. But we can make an informed choice for our kids because we know them, and ourselves, and what we value.

We can rest assured that school, neighborhood, and friend choices can be altered and adapted as our children grow and, ultimately, our kids will be all right.

Then there are the rock and hard place decisions, the ones that don’t have a clear outcome or goal, or one that is unattainable.

This is where I’m at with my son’s seizure plan.

If I put my son on daily medicine I run the risk of altering his personality irrevocably.

Seizure meds alter one’s brain, that is their intention and result. My boy – bright, cheerful, communicative, funny, cooperative and social – may turn into a different child entirely.

Or maybe not. The point is, I don’t know.

However, when we only have a rescue med it means he is going to suffer from seizures, and when he does he will suffer both during the event and after.

Something I’ve had to come to grips with in my adult life is that sometimes, there isn’t a good option.

You are simply choosing the lesser of two evils, and it’s going to feel horrible. There is no way around it.

This is the responsibility you take on as a parent and the best decision I can make for my child is to accept that responsibility.

Rock, hard place, or not.

2020: Let’s be resolved

Fresh starts, don’t we love them?

A new year begins and everyone wants to talk about working on themselves, their goals, their careers, etc.

I hate to bear bad news but the changing of a calendar year is arbitrary; we can set goals for ourselves any time we want.

That second half is the good news! This year I realized that having goals helps me see my son’s progress, so it would probably help me, too.

Here are some specific goals I’ve set for myself this year.

Take more pictures with my kids

This is a priority. I’m usually behind the camera, not in front. I’m going to get over my weird guilt about asking strangers to snap a photo so that I can have more visual memories with me in them!

Return messages to medical or education team members within two days

This goal reminds me that I need to respect other peoples’ time more. I usually fall into thinking that “I’m just too busy” to return calls or e-mails, but it’s simply not true. Every evening, before I settle into recreational time, I will return any messages outstanding.

Set boundaries with my friends

I have the best friends; they are not demanding, judgmental, or anything other than understanding and kind to me and my children. It’s natural to want to spend a lot of time with them! But arranging meet-ups last minute stresses me out. Regular play dates, on the same day each week, will help us feel less anxious.

Attend to my basic needs every day

This one should go without saying, but honestly I do not take very good care of myself. And that doesn’t make me holier-than-thou; on the contrary, it’s very unwise. When I neglect my own needs for respite and attending to my interests, I begin to resent my role as a caregiver. I resolve to find time each day to do something good for me, whether it’s reading a good book, going to bed earlier, exercising, or doing something creative.

Write down when we have a good day

This is crucial. It’s so easy to get bogged down in the bad days, so I need a visual reminder of when something good has happened! I’d love to look back at the end of 2020 and read about all the wonderful things that we experienced, big or small.

Hopefully, I can stick to these goals and make this year more meaningful.

Respite care is a Win-Win-Win

Oh, respite care, how I love thee. Let me count the ways!

It normalizes the “special” out of special needs; when you see more kids who are moving/communicating/behaving/eating/playing like you, you’re not so different from everyone after all.

Everyone needs to feel they belong somewhere.

It gives my daughters and I a chance to do things my son can’t do – and I don’t feel guilty about either a) refusing to go anywhere where he can’t play, or b) bringing him to places he won’t have fun in because he can’t participate in the activities.

He plays with friend peers and genuinely has a good time while we do something we genuinely enjoy.

Everyone is happy! How often can you say that about all your kids?

Respite care also allows me some breathing room away from the constant “on call” nature of special needs parenting. I can choose to read a book, uninterrupted, run errands at my own pace, do everything or nothing at all, and do it with a clean conscience; my son is under the care of professionals and he will be taken care of.

I have nothing to worry about!

It provides an environment in which my son can move around as he sees fit (walking on his knees), without neurotypical kids watching him intently, or making comments about how he gets around.

That seems like a small thing, but it’s not.

Wherever we go, we get questions as to why he moves like he does.

Or worse, he gets comments from children even younger than him that he is “a baby” because he can’t walk.

That is very frustrating to my son. And while I don’t mind answering the questions (advocates need to educate, after all), it is nice to have a break from it.

And for my son to have a break from being watched. All. The. Time.

Lastly, the trained volunteers at our respite care facility love to be there.

We all know that when you find a vocation that suits you, you’re more dedicated to it. And playing alongside the kids genuinely makes them happy!

They get to see kids being kids; having fun however they want, with no expectation of the outcome.

Respite care is a win for everyone!

Get off of Social Media

In this social media obsessed day, it’s easy to get caught up on someone’s Instagram feed or Pinterest page and question everything about your parenting technique (and, do I even have a technique?) because someone else is making beautiful crafts and baking and taking their kids to all the best museums.

Am I failing my kids by not making their lunches into picture-worthy Bento box treats?

Frankly, I’m more concerned that they eat fruit most days, and my aspirating son doesn’t have anything too dry to eat.

Am I failing my kids because they aren’t seeing where every single culture around the world is at right now? I’m more concerned that they learn to love and help the kids in their own neighborhood and city.

Am I a failure of a mom because I didn’t shower in a couple days, and my perfect seasonal outfit is sweatpants and an oversize sweater?

Do I sound a little bitter? Maybe I am.

Maybe I am a tiny bit jealous of the Instagram moms who can accomplish all these things.

Maybe I am jealous of the excess time I had before my son was born with cerebral palsy. Maybe I wish I could do everything, be everything to all my kids.

The reality is that there is only so much time in a day. I try to spend a little quality time with each of my children daily, but sometimes I fall flat.

My son gets extra attention by default; he needs me to listen longer because he is trying so hard to be verbal. It often takes me six times hearing it before I process what he’s saying.

He also needs extra time to go up the stairs, to be put in and out of a structural vest, his AFOs, his wheelchair.

Sometimes it’s all I can do to promise them that “maybe tomorrow” we will sit down together to do that puzzle, to color in a book, to paint our nails.

Or I try to do one of those things while putting someone to bed, or reading a story, or feeding my son. I’m honestly not the best at multitasking though. Someone always feels slighted.

I’m sure my kids wish they could go to all the museums, too, and do all the crafts, and bake all the beautiful Pinterest-pinned desserts. So, I’m sad I can’t give them those things.

So what’s a modern mom to do? The first thing is, get off social media.

Stop comparing my life to someone else’s. Sounds easy, but it isn’t (especially in America).

It’s in our nature to compare to one another, even though it benefits only the upper echelon of socialites who have unlimited time and money.

We simply have to reject this idea that we need to be like someone else.

We need to embrace our differences and proudly jump into the social waters, ten minutes late, with all our extra equipment, and post about that.

On Different Pages

“Your son will have developmental delays.”

I turned to my husband with a genuine smile, thinking my son, who had been in an induced coma for a week, and who I feared would come home in the same condition, was now being handed a hopeful future.

My husband, seeing my smile, twisted his face angrily and quickly left the NICU room, slamming the door behind him.

The same words were spoken to both my husband and I, in the same place and time, by the same doctor; how did we hear them so differently?

Miscommunication happens all the time.

We send a text, thinking our tone and wording was spot on, and somehow our intended meaning gets lost through the technology.

The same can happen when we leave out critical information we expect our audience already knows.

And for many conversations this doesn’t bear much weight; if we want to clear things up, we can and if not, no harm done. Simple misunderstanding.

But when the topic is our child’s medical diagnosis, good communication is absolutely necessary.

The most important gift we can give your special needs child is a strong co-parenting relationship.

If the parents are on different pages with accepting this life-changing information, we’ve got a bigger problem than the diagnosis itself.

Don’t lose hope; there are many ways to keep communication open and less tense. A less tense home is best for everyone in your family!

Here are some strategies if your child is newly diagnosed and one of you is having a hard time accepting it.

Be patient.

Being patient with your partner as they process a diagnosis shows them their emotions are important, valid, and worth waiting to hear.

Be patient as they adjust to new medical terms, too. Care plans, specialists’ roles and treatment always include medical jargon, which can be hard to understand.

Allow your partner time to process.

Receiving a diagnosis for your child is both a relief and the start of a roller coaster ride, the track, twists and turns of which you can’t predict.

It is altogether frightening, angering, depressing and exhausting. Giving your partner space and time to process lets them know you will be with them along the way.

Ask them, “Is this a good time to talk?”

You’ve just come back from a great appointment with a rehab doctor. You’re excited to share what he said with your partner.

But will they perceive the information in the same light as you did? There’s no better way to find out than to ask first if you can share.

And if they say no, accept that and agree to talk when both parties are feeling up to it.

Try to keep emotions in check.

Your son is about to undergo surgery and you’re freaking out. Your daughter just had her first seizure.

Your child is starting school, beginning with a new therapist, finally getting a piece of necessary medical equipment, traveling out of state with you.

Whatever the new event, you’re going to have strong feelings about it – good or bad – because it’s happening to your own child.

But emotions running high are going to affect you, your child, your partner, and your perception of what is happening.

Acknowledge your feelings and share them with a trusted friend, or write them down in a journal.

Then approach the situation with your partner, with your emotions less intense. This will allow everyone to stay calmer and more clear headed.

Being a special needs parent is a joyful and rewarding role unlike any other. It can also be very difficult at times.

When you and your partner are on the same page with support of each other, you can and will enjoy that role – and your child – together.


For the Love of Siblings

When you have your first child, nothing matters more than spending every waking moment with them.

New parents dote on their firstborn in a way unparalleled, making even the most mundane of tasks memorable and full of love.

It is an enviable relationship in many ways.

With every subsequent child born, parents’ time and attention is divided, making one-on-one activities difficult, if not impossible.

There are needs that demand an immediate response, and guilt that you’re spending too much or too little time with your other children can creep in.

But if you thought it was emotionally precarious before, the birth of a child with special needs will surprise you with how challenging it becomes to make each of your children feel as, well, special.

Speaking as a mother of four – three daughters and one son with cerebral palsy – I’d like to offer some solutions that have worked for my children in this regard.

Hopefully you find something here that helps you and your family.

My number one suggestion is to take advantage of respite care in your community.

I can’t say enough positive things about respite care! It’s great for your special needs child because they can play in a safe environment with peers who face similar challenges.

This shows the kids that they are not alone in their differences from neurotypical kids.

For the rest of your family, it allows you the freedom to go places without making special accommodations (which of course we are all willing to do but to have a break from is welcome).

Make everyday outings more meaningful.

Museums, parks, and community events are great, though not always accessible. But you can frequent the places you know work for all your kids, and turn those places into something special.

For example, we love our public library; all the kids’ rooms are on the same floor, there are elevators and accessible bathrooms, free activities and touch screen computers.

Before we go, I talk up the trip, asking them what subjects of books they might want to check out, encourage them to see what the craft table has to offer, and so on.

As a result, my kids all love the library and think of it as a fun place to visit.

Make home time more meaningful, too.

Have you ever read a chapter book aloud to your child?

Or sat down and colored in a beautiful coloring book with them?

How about watching a funny show together, one that’s on after the “little kids” go to bed?

These seem like small things, but to the sibling of a special needs child, the attention you’re giving them is worth its weight in gold.

If you can’t take them somewhere, at least you can hug them.

We can’t always do special outings, and that’s OK.

Don’t underestimate the power of a long hug, singing a favorite song together, or simply asking them about what they are interested in right now.

Kids love to feel they’ve got your undivided attention, so give it to them a little bit each day if you can.

And don’t forget the verbal praise! An encouraging word goes a long way in putting a contented smile on my kids’ faces.

Take advantage of those who offer help.

Relatives in town? Friend offers to babysit? Take them up on the offer if you know your child will be cooperative.

I understand not all special needs children can be flexible in their routines, but if an occasion to spend time with their siblings is offered, try to take advantage of it.

You will find out who your friends are when your family’s needs start piling up; these true friends really do want to help, so let them!

In all you do, be intentional and follow through.

Did you say you’d take them to a movie? Or that they could have a sleepover and you would chaperone? Then don’t flake on your promise.

Is it a busy week and you don’t have spare time for special sibling time? Then don’t tell them you might!

It’s OK to say “we’ll do that another time soon.” It’s not OK to say you will, then cancel at the last minute.

If you want your kids to resent you (or their special needs sibling), that’s the way to accomplish it, and quickly.

We’ve incorporated each of these methods into our routine and, for the most part, we’ve found success with each sibling feeling unique, valued, and, especially, loved.

I hope you and all your children can use these or find other ways to enjoy each others’ company every day.