About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various
named disorders, including Ring 18 and the more well-known Trisomy 18 (which
affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1
in 40,000 Americans have Chromosome 18q-, which means that less than 7,800
Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental
issues. He has had heart surgery, kidney tract surgery, bronchoscopies and
endoscopies, slept with an oxygen tube, and has had dozens of medical tests and
sees numerous specialists. We've been in and out of hospitals and doctors'
offices since he was three months old. He also has severe developmental delays
and receives speech therapy, occupational therapy, physical therapy and
Raising a child with any disorder, condition or special need, is both a
blessing and a challenge. A challenge for the obvious reasons, and a blessing
because you don't know the depths of victory and joy until you see your child
overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself.
As a special needs parent, I often don't share my feelings on this aspect of my
life, even with my closest friends, so I decided to compile a list here with the
goal of building understanding (I was largely inspired by this beautiful post,
authored by another parent to a child with a chromosomal disorder). I don't
claim to speak for every special needs parent out there, but from the ones I
know, some of these are pretty universal. If I've missed any, please leave a
1. I am tired. Parenting is already an exhausting endeavor.
But parenting a special needs child takes things to another level of fatigue.
Even if I've gotten a good night's sleep, or have had some time off, there is a
level of emotional and physical tiredness that is always there, that simply
comes from the weight of tending to those needs. Hospital and doctors' visits
are not just a few times a year, they may be a few times a month. Therapies may
be daily. Paperwork and bills stack up, spare time is spent researching new
treatments, positioning him to sit a certain way, advocating for him in the
medical and educational system. This is not to mention the emotional toll of
raising a special needs child, since the peaks and valleys seem so much more
extreme for us. I am always appreciative of any amount of grace or help from
friends to make my life easier, no matter how small, from arranging plans around
my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say,
but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old
(like walk), I feel a pang of jealousy. It hurts when I see my son struggling so
hard to learn to do something that comes naturally to a typical kid, like
chewing or pointing. It can be hard to hear about the accomplishments of my
friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair."
Weirdly enough, I can even feel jealous of other special needs kids who seem to
have an easier time than Jacob, or who have certain disorders like Downs, or
autism, which are more mainstream and understood by the public, and seem to
offer more support and resources than Jacob's rare condition. It sounds petty,
and it doesn't diminish all my joy and pride in my son's accomplishments. But
often it's very hard for me to be around typical kids with him. Which leads me
to the next point...
3. I feel alone. It's lonely parenting a special needs
child. I can feel like an outsider around moms of typical kids. While I want to
be happy for them, I feel terrible hearing them brag about how their 2-year-old
has 100 words, or already knows their ABCs (or hey, even poops in the potty).
Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect
Kid). It's been a sanity saver to connect with other special
needs moms, with whom it's not uncomfortable or shocking to swap stories about
medications, feeding tubes, communication devices and therapies. Even within
this community, though, there is such variation in how every child is affected.
Only I understand Jacob's unique makeup and challenges. With this honor of
caring for him comes the solitude of the role. I often feel really lonely in
4. I wish you would stop saying, "retarded," "short bus," "as long as
it's healthy... " I know people usually don't mean to be rude by these
comments, and I probably made them myself before Jacob. But now whenever I hear
them, I feel a pang of hurt. Please stop saying these things. It's disrespectful
and hurtful to those who love and raise the kids you're mocking (not to mention
the kids themselves). As for the last comment, "as long as it's healthy," I hear
a lot of pregnant women say this. Don't get me wrong, I understand and share
their wishes for healthy babies in every birth, but it's become such a
thoughtless mantra during pregnancy that it can feel like a wish against what my
son is. "And what if it's not healthy?" I want to ask. (My response: you will be
OK. You and your child will still have a great, great life.)
5. I am human. I have been challenged and pushed beyond my
limits in raising my son. I've grown tremendously as a person, and developed a
soft heart and empathy for others in a way I never would have without him. But
I'm just like the next mom in some ways. Sometimes I get cranky, my son
irritates me, and sometimes I just want to flee to the spa or go shopping (and,
um, I often do). I still have dreams and aspirations of my own. I travel, dance,
am working on a novel, love good food, talk about dating. I watch Mad
Men, and like a good cashmere sweater. Sometimes it's nice to escape and
talk about all these other things. And if it seems that the rest of my life is
all I talk about sometimes, it's because it can be hard to talk about my son.
Which leads me to the final point...
6. I want to talk about my son/It's hard to talk about about
son. My son is the most awe-inspiring thing to happen to my life. Some
days I want to shout from the top of the Empire State Building how funny and
cute he is, or how he accomplished something in school (he was recently voted
class president!). Sometimes, when I'm having a rough day, or have been made
aware of yet another health or developmental issue, I might not say much. I
don't often share with others, even close friends and family, the depths of what
I go through when it comes to Jacob. But it doesn't mean that I don't want to
learn how to share our life with others. One thing I always appreciate is
whenever people ask me a more specific question about my son, like "How did
Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than
a more generalized "How's Jacob?" which can make me feel so overwhelmed that I
usually just respond, "Good." Starting with the small things gives me a chance
to start sharing. And if I'm not sharing, don't think that there isn't a lot
going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family
that valued performance and perfection above all else, and unconsciously I'd
come to judge myself and others through this lens. Nothing breaks this lens more
than having a sweet, innocent child who is born with impairments that make
ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or
adult, special needs or not) exactly where he or she is -- no matter how they
stack up against what "should be." Raising a special needs child shatters all
the "should bes" that we idolize and build our lives around, and puts something
else at the core: love and understanding. So maybe that leads me to the last
thing you don't know about a special needs parent... I may have it tough, but in
many ways I feel really blessed.
Follow Maria Lin on Twitter: www.twitter.com/marialinnyc
Here is the link to the article for further reference: