Category: Soul Food

“Our results are in! We are having a healthy baby boy who is very low risk for any chromosomal abnormalities. Merry Christmas!”

The woman who posted this in my “Advanced Maternal Age” online support group had every right to be thrilled.  After all, who wants to find out that their child will have disabilities?  When you are over 35 (or, in my case, over 40), most insurance companies cover the costs of extra testing for chromosomal abnormalities, as the risk of these conditions increases with maternal age.

Day after day, I celebrate with my peers when they get the good news.  I, too, had the testing done, and was relieved to hear that the chances were good on at least one diagnostic front that the new baby…well, that he wouldn’t be like Charlie.

Indeed, my first conversation with the high-risk OB was incredibly surreal from the perspective of a mother already raising a child with what many in the medical world have described as having a “catastrophic” medical condition.  Jim and I sat across from the knowledgeable doctor, smiling and nodding as he reviewed flip charts about eggs and chromosomes and how age impacts our risk factors for abnormalities, and then outlined the types of testing that I could have and how early in the pregnancy that I could have it done.

I explained to the OB about Charlie, how all of the tests to determine the cause of his condition have been inconclusive, and that he is likely to function like a baby for the rest of his life.  I told him that I was told that it was probably a fluke that he is like this, but that the reality is, we just don’t know.  I shared that because of this unknown factor, I am a bit more anxious than the typical expectant mother, but as a woman of science, I find comfort in the lack of evidence that lightening will strike twice.

For the first time in his 20-minute canned speech, he stopped what he was doing and  looked right at me.  A softness came over his face and I could tell that he was trying his very best to be present with me.  I imagined that he was thinking, “This one is not routine.  I need to connect with this woman.”

I was offered a routine blood screening test that can detect common chromosomal abnormalities.  If this test was positive, I would still need a confirmatory diagnostic test, which would probably be amniocentesis.  The doctor explained that amniocentesis carried with it a small risk of miscarriage.

I have a background in reproductive epidemiology, so I already know a little about these things.  I know that some common comorbidities associated with chromosomal abnormalities such as cardiac defects are sometimes detectable on high-quality ultrasounds during pregnancy.  The detection can allow families to line up their medical team, and establish strong family and community support before the baby is even born.  I know this because many children with Charlie’s condition, unlike Charlie, have detectable prenatal abnormalities, and I routinely discuss these issues with them.

I asked the doctor what would happen if the blood test was positive and I chose not to get the amniocentesis, for fear of the miscarriage risk.  “Would we just assume that the baby has an abnormality and proceed with good ultrasounds, keeping a closer eye on the baby even if I don’t have amnio?”

For the second time, he looked up.  He tripped over his words.

Speechless.

“Are you telling me that you would not terminate the pregnancy if you test positive?”

I hadn’t really thought of it in those terms, but I answered him with a question:

“From what I described to you about my son…it’s my understanding that kids with the conditions screened for in this test, specifically Trisomy 21…that, of course, there is a spectrum of outcomes, but that many of those kids can have really great lives…walking and talking and holding jobs and falling in love….outcomes that seem to me to be much better as far as functional level goes than what Charlie has.  Am I correct about that?”

“Yes, that’s an accurate assessment.”

“Well then…I mean, Charlie is my sunshine.  He’s my whole world.  He has many limitations but he’s just delightful….I don’t feel afraid to have another baby with special needs.  So, no…I guess my answer is no, I wouldn’t terminate if the test was positive.”

My position on this was a revelation to everyone present.  I am vocally pro-choice.  I don’t think that any woman should be compelled to have a baby, and for this reason, I am very glad for these tests.  But, for me, I have faced many pregnant women’s worst fear:  that something is wrong with the baby.  And I have the wisdom, the hindsight to know, that, for me personally, my life with Charlie is beautiful, six years after receiving Charlie’s fateful diagnosis.  There is nothing nightmarish about Charlie, although dealing with the school district and the insurance companies, THAT’S a NIGHTMARE.  But I digress.

Of course, we have absolutely no way to detect spontaneous genetic mutations or other conditions not included in these screening tests.  We had no idea when Charlie was born that he would be the way that he is.  We thought Charlie was “normal” at birth, except for his prematurity.

We all roll the dice when we get pregnant, don’t we?

For me, this pregnancy experience has become a philosophical exercise of sorts, an unexpected critique of the pop culture phenomenon that pregnancy has become, the perceived entitlement not only to have a baby, but a HEALTHY pregnancy and HEALTHY baby and all of the activities surrounding the celebration of such entitlement.  Of course, I and the thousands of other parents of children with special needs with whom I regularly interact will tell you that there is no such entitlement.

I see these entitlements everywhere in the culture that surrounds pregnancy:

babymoons

gender reveal parties

birthing plans

push presents

maternity photo shoots in the age of Pinterest

Let’s be clear:  this is not an indictment of these practices, and indeed, I think it is lovely for pregnancy to be celebrated and elevated by our culture, for women to attempt to own and control their childbirth experience to every extent possible, avoiding unnecessary interventions and rejecting cultural practices that have no basis in science.

I love the idea of the ultrasound tech placing the top-secret results into an envelope, which is then given to a bakery, which then bakes the cake with blue or pink inside, and everyone finds out the baby’s sex at a big party when the cake is cut.  That’s AWESOME.

I only mean to point out how these practices can serve as painful reminders to those of us who are white knuckling it through complicated pregnancies, or are simply superstitious that any normal expression of joy will jinx it somehow, as something bad always seems to happen to our babies.  It also puts into context the crushing disappointment, the overwhelming feelings of unfairness and being unprepared for sadness that is experienced by parents upon their child’s diagnosis.  The world tells us that everything about having a baby is supposed to be fun.

I was so focused on the ultrasound tech showing me that the baby’s brain was present in both hemispheres that I hadn’t considered entitlement to anything beyond that, let alone fantasizing about cutting the mysterious cake in front of a roomful of well-wishers.

Instead of a babymoon, we will be taking Charlie’s Make-a-Wish trip to a resort designed specifically for families of children with life-threatening diseases.

While others are planning fun activities for big siblings to participate in during mom’s hospital stay, our plan focuses heavily on training friends and relatives on how to administer Charlie’s dozen + pills per day, where to find his diapers, and reminders to keep the gates locked so he doesn’t wander off in the middle of the night.

Do you see what I mean?

Today, at the OB’s office, the nurse administered my weekly shot of progesterone that helps prevent me from going into preterm labor.  When she was finished, I absentmindedly sang, “Allll done! (as my son would say).”

“Oh, how old is your son?” the nurse asked, innocently.

I realized, sheesh, I must sound like a toddler’s mom, not the mother of an almost seven-year-old whose speech is just starting to emerge.

“Oh, he’s almost seven, and he’s special, so that’s why we are being so careful this time…” I stumbled over my words.

And here she thought injecting a chatty 41-year-old in her butt was going to be the most awkward part of her day.

But so it goes when you are pregnant, and one of your other children has special needs.

Last week, I attended my “neurotypical” third grader’s Catholic school Christmas pageant. I attended alone because I had help to care for her brother at home, which allowed me to give her my undivided attention.

The pageant, which narrated the Nativity scene, was beautifully performed with costumes, singing, and spoken word.  My daughter was a shepherd in the choir.  I was proud of the homemade tea towel and twine head gear that I fashioned for her at the last minute, still recovering from a very busy month that included an IEP meeting, several medical appointments, and a four-day work conference out of town.

I was already having the most fabulous time and getting into the Christmas spirit when the little first graders, representing a choir of angels, filed in to perform Christmas carols.  Adorned with tinsel headbands, I was smitten.  So well-rehearsed, they followed the music teacher’s lead and sang, perfectly in unison, hymn after memorized hymn.

It was all so precious and delightful, and I was beaming with pride that my girl was a part of this heartfelt production, when suddenly….I was jolted to another reality:  the Ghost of Christmas Present had arrived.

CHARLIE should be singing with tinsel on his head.

Charlie is the same age as the tinsel-adorned first graders, except Charlie has profound intellectual disability, and while we are not quite sure what he understands, he tends to function at a level of a 1-2 year old.  This means he doesn’t seem to care about most holidays aside from the general excitement, glitter, and togetherness of it all. He is mostly nonverbal so can’t tell us what he wants for Christmas.  He doesn’t understand what Santa is, let alone sing a song about him. We are not even sure if Charlie knows his own name.  Charlie should be in first grade right now, at his sister’s school, not a different school across town which was the only one able to accommodate his extensive medical, developmental, and behavioral needs.

As much of a bummer as it was to have this realization about Charlie’s differences harsh my holiday mellow, something else occurred to me almost simultaneously: I got through the entire dress rehearsal that morning and another 20 minutes of the actual show without thinking about what might have been until that moment.  After acknowledging these feelings for a few minutes, I was able to switch back to enjoying the show.  In the end, it was a beautiful night.

This represents major progress for me, a sign that I am getting to a good place with the holidays, but it will always be a struggle.

For me, holiday depression and isolation tries to rear its ugly head starting around Halloween, when I catch a glimmer of wistful what might have been emotions while watching the other kids Charlie’s age pick their costumes and trick or treat.  My Charlie doesn’t understand what’s happening, and I mostly take him trick or treating for his sister’s benefit.  This year, I brought with us his home health aide and behavioral therapist so that I could spend more time with his sister.  Neighbors were very warm and accommodating to our little entourage, but I am not made of steel.  I felt a pang in my heart with every house we visited, with each door that opened and only one of my children said, “trick or treat.”

I feel it when I see the other kids his age draw a turkey by tracing their hands, unassisted.

It really starts to creep in at Christmas time, upon receipt of invitations to participate in holiday crafts events, tree lightings, and cookie decorating, or when it’s time for my daughter, but not my son, to write a letter to Santa.

Then, Christmas morning, it is inevitable: no matter how positive of a spin I try put on it, or how cheerful I try to be for my daughter, or even how happy I actually am, a familiar wave of grief washes over me, watching him play contentedly with his old iPad while his sister unwraps her pile of gifts and he completely ignores his.

There is no excitement or anticipation.  No annual holiday movie marathons.  No favorite holiday food.  No wish lists, no elves, no Santa, no traditions.  It’s all just another day for Charlie.

And then there is the experience of taking my kid to unfamiliar places in general, and on top of that, seeing family and friends that I only see once a year.  The party often turns into a mini-scientific and educational conference for guests requesting an update on my child’s conditions, brain surgeries, progress (or lack of progress), and prognosis, all while I am sweaty and exhausted, trying to keep him from peeing on the host’s floor.  Merry Christmas to me.

I believe that I am in a good place this year because I have actively practiced certain strategies involving mindfulness, delegation, and general self-care.  I am also very fortunate to have many experienced parent friends to lean on, including my friends, Andrea and Lauren, who have children with special needs.  I would like to share our strategies, in the hopes that it will help you to have more fun at the holidays, no matter what your challenges might be.

“What gets me emotional about the holidays is whether or not this is our last one together. While we all have an expiration date, it seems so unfair that a child needs to go through this medical mess. I feel these suppressed feelings come to the surface during the holidays.”

– Andrea, a veteran parent of a child with special needs and member of Neurology Parent Professionals

Be direct about your needs

When people invite you to their home and ask you what you need, BE SPECIFIC.  Most people really want to help but they have no idea how.  My in-laws very thoughtfully asked me for input on how to make their Thanksgiving parties easier on me.  We were able to schedule the parties around medication and bedtime so we wouldn’t disrupt his routine.  That simple gesture alone took a lot of stress out of our holiday.

“I have always found being direct and setting expectations has been helpful. For example, when RSVP-ing, I mention where my daughter is in her schedule, this is typically her nap time, cranky time etc. just so if behaviorally something doesn’t work out or we’re late they’ve been forewarned.   I also ask about the food and the number of people so I can prepare a meal option. Do you mind if I bring my portable highchair? I’ve asked if it’s ok for the wheel chair to come in the house. “

-Andrea

Don’t overschedule

EVERYONE feels overscheduled during the holidays, and it’s even more overwhelming when it takes you twice as long to do the most basic things.  It sounds obvious, but don’t feel guilty for saying no to activities that are just too darn difficult.  I love Christmas caroling but the thought of pushing a wheelchair in the freezing cold with both kids is not my idea of holiday magic.  Instead, ask your local scout troop to host an indoor caroling event at a nursing home or pediatric hospital, which is something everyone can enjoy.

Put your foot down about unnecessary medical procedures, hospital stays, and IEP meetings around the holidays.

Offer to host

“I might have a small family Hanukkah dinner at our house, so at least he is comfortable at home.”

-Lauren, a veteran parent of a child with special needs and member of Neurology Parent Professionals

I know what you are thinking. “No WAY!”  Because ain’t no messy house like a special needs messy house.  Hear me out.  Hosting the holiday party myself means I have total control of everything from the food to the schedule.  The whole place is Charlie-proofed.  There are no poisonous exotic plants for him to eat.  No Ming vase to break.  His meds, special foods, safety bed, diapers, and everything else is right there, so I can actually relax a little.  Also consider hosting craft or wrapping nights with friends and their kids.

Understand that your presence is your present

Don’t feel the need to be Martha Stewart.  You are already Super Parent.  You have nothing to prove.  I guarantee that EVERYONE in your world admires how you handle your daily routine, even if they don’t tell you or if they behave insensitively at times.  I hire someone to wrap my gifts, and get gift cards whenever possible.  I stopped sending Christmas cards a few years ago because…there’s just no way.  When I visit someone’s home, I hardly ever bring anything that I have to cook.  I bring wine, good bread, cheese, or something else I can pick up at the grocery store.  If you have a child with special needs, you are probably also on a budget.  For the many teachers and therapists in your life, in lieu of shopping for expensive gifts, make a small donation to your favorite charity in the name of the school or therapy center that your child attends.

Make Gift Giving Realistic

“I personally wrap my daughter’s toys in bags with bright tissue to make it easy for her to participate like all the other kids. She doesn’t get the concept of Santa or Christmas or that this gift is for her and I’m okay with that and that’s all that matters. Family members sometimes still wrap gifts in boxes which is difficult for her to tear but I just help her along.”                                                       

– Andrea

“I make an Amazon wishlist for my family for Hanukkah, so that he receives gifts I think will be helpful for his development, and/or he might enjoy. I dread the insensitive question, ‘What does he want??'”

-Lauren

Andrea offers a simple solution for what can be a dreaded and exhausting experience. In addition to gift opening challenges, the gifts themselves can pose difficulties.  Charlie does not care if he gets presents, and it can be incredibly uncomfortable to watch him not enjoy his gifts in a room full of people with anxious grins on their faces looking for a reaction that he is never going to give to them.  An additional complication for me is the fact that I also have a daughter who believes in Santa and would be confused if Charlie didn’t get presents.  I usually get around this by having Santa give Charlie the “experience” presents  like museum memberships or large, shared gifts like a DIY fort kit to build with his sister (translation:  his sister and I build it, and he plays with it, maybe).  Ask your child’s therapists what toys they would like her or him to work with and purchase those as “gifts.”  Another tip is to buy and wrap gifts on behalf of family and friends and allow them to present the gifts to your child.

Remember:  If it is only going to depress you, or completely exhaust you trying to make it happen, don’t do it.  Don’t worry about what others think.  My litmus test for these situations is, if HE doesn’t care, and his sister doesn’t care, it might not be a battle worth choosing.

Remember Siblings

One thing I struggle with is my tendency to ignore my daughter at holiday events because my son needs so much supervision in unfamiliar places that are not Charlie-proofed, or because everyone’s asking about Charlie and that’s all I can focus on.  Something that’s very helpful is making sure we arrive when her cousins are there so that she can have a great time without as much direct attention from me.  I also like to bring a picture that she drew for the hostess so that she’s already getting positive attention the minute we walk through the door.

Get Creative with Holiday photos

“Our Christmas cards will be far from perfect. It will be the best choice of 300. It will contain some adaptive technology so it screams special needs but it will never reflect the emotions of all that was gained or lost throughout the year.”

-Andrea

Many school and mall photographers fail to capture the fabulous Charlie-ness of it all.  His last school picture made him look like he had a hangover.  I am now stuck with a photo that shows him at his most impaired and vulnerable, and that bums me out every time I look at it.  If you want to give photos for the holidays, consider snapping them yourself and making a collage.  Chances are, you already have some amazing shots on social media.  Or, consider investing in a good family photographer who will take time with you to capture the true essence of your family.

Have a getaway car

Consider taking two cars to the party, in the event that your child with special needs must leave with one parent while the other parent stays with the rest of the family.

Try to ignore criticism

Well-meaning questions are one thing, but let’s face it:  some people like to be critical and unsupportive, especially when it comes to other parents’ choices.  If you are a person who enjoys making your ignorant opinion known, you are going to have a field day with my kid, because nothing inspires quite so much ignorance as a child with disabilities.  My son is on a special, medically-supervised ketogenic diet to control epilepsy.  Holidays are a great opportunity for others to vocalize how bad that they think my parenting is for “not letting him eat Christmas cookies.”   It’s difficult not to take their comments personally, especially when I spend so much time and energy researching and agonizing over these medical decisions that others so readily dismiss.

I am VERY lucky to have very supportive family and friends, but I still get these questions and comments from strangers, year-round, not just at the holidays.  I try to remember that these are the same people who criticized my choices with my neurotypical child as well, for example, my decisions to breastfeed and use sign language.  As a parent, you must pace yourself with these people, because you will only get yourself all worked up and, I have found, rarely will you actually get anywhere with your efforts to educate. I find that with super-critical people, it’s often best to change the subject or walk away.

Expect – and Embrace – Meltdowns

“If there’s anywhere new we go I bring a lot of snacks, some fidget toys, headphones, and just pray it goes okay.”

-Lauren

One year, Charlie ate Grandma’s decorative pine cone, and we spent Christmas afternoon on the phone with Poison Control.  We can laugh about it…now…

“There are always going to be the disaster moments too, like when you daughter pulls the table cloth and all of the food tumbles to the ground. Laugh at those moments ’cause they are the real memories.”

-Andrea

What are some of your tips for making the holidays more enjoyable with your family member with special needs?  Please leave your advice in the comments!