I have recently been inspired by several posts by other parents who are raising the veil off of how we parents feel.
So here is mine derived from those I have read (including some published nationally in places like the Huffington Post) . I do not take full credit as I have copied some sentences and others I have just added what sums up my experience.
What you may not know about me:
1. I am tired.
Parenting is already an exhausting endeavor.
But this is a whole other 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 special needs.
Doctors and specialists visits are not just a few times a year,
they are several times a month.
Paperwork stacks up,
spare time is spent researching new treatments,
positioning them to sit and speak a certain way,
advocating for them 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,
including arranging plans around my schedule and location...
And bringing me a Tim Horton's Butter Caramel Ice Cap Supreme .
2. I am jealous.
This is a hard one for me to come out and say, but it's true.
When I see a child do what my son can't... 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 making friends or sitting still.
It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for my boys,
"It's not fair."
Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than my boys.
It sounds petty, and it doesn't diminish all my joy and pride in my boys' accomplishments.
But often it's very hard for me to be around typical kids with them.
Which leads me to the next point...
3. I feel alone.
It's lonely parenting a child on the spectrum.
Especially when the child is non - verbal (and those days are never far from my memory).
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 .
Good for them,
but it's not what my world looks like.
I stopped reading sites about development milestones years ago
(my favorite used to be babycenter.com)
because I got tired of comparing and falling short.
It has been a sanity saver to connect with other special needs moms,
with whom it's not uncomfortable or shocking to swap stories about behavior therapies,
food restrictions,
communication devices
and coping methods.
Even within this community, though, there is such variation in how every child is affected.
Only I fully understand Colin and Avery's unique makeup and challenges.
With this honor of caring for them comes the solitude of the role.
I often feel really lonely in raising them.
4. I am scared.
I worry that I'm not doing enough.
What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed?
I worry about their futures ,
whether they will ever drive a car,
or get married,
or live independently.
I am scared thinking of the hurts they will experience being "different" in what's often a harsh world
(not to mention that I fear for the physical safety of the person who ever inflicts any hurt upon my child)
I am scared about finances.
Finally,
I fear what will happen to them if anything were to happen to me.
In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Autism Spectrum disorder.
When I meet these people , the sadness and despair that I was projecting onto Colin and Avery's future lives (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives.
The fear of emotional pain is the one that remains the most.
5. I wish you would stop saying,
"retarded,"
"short bus,"
"He's just slow" or
"as long as he is healthy... "
I know people usually don't mean to be rude by these comments,
and I probably made them myself before I had my boys.
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 he is 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 he is not healthy?" I want to ask.
(My response: you will be just fine! You and your child will still have a wonderful life.)
6. I am human.
I have been challenged and pushed beyond my limits in raising my children.
I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without them.
But I'm just like the next mom in some ways.
I get really cranky,
my children irritate me,
and sometimes I just want to flee to the spa or go shopping
(or further away ).
I still have dreams and aspirations of my own.
I travel,
I sing,
I am working on a novel,
I love good food ,
I scrapbook and
I play the flute.
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...
7. I want to talk about my children / It's hard to talk about my children. They are the most awe-inspiring thing to happen in my life.
Some days I want to shout about how great they are!
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 Avery and Colin .
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 them,
like "How did He like the zoo?" or
"how is Music Therapy going?"
rather than a more generalized "How is Avery?"
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 appearance 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.
the last thing you may not know about me ...
I do have it tough some days, but I feel really blessed.
