My boy was smart, and I knew that all too well. He was high
functioning, and I was confident that we would be able to help him
overcome any obstacles before starting kindergarten. By the time he
started school, no one would even know. They might just think he was a
little quirky.
Plenty of people are quirky. No big deal.
So I spent that first year with few cares at all, reading a handful
of books, learning about social stories and visual schedules and the
basics of Asperger’s, convinced that we would be past all of it in a
couple of years.
Then kindergarten came, and my world got smashed to pieces.
Things didn’t work. The new school, the new teacher, everything we
had prepared for. . . it broke faster than I could scurry around and
pick up the pieces. Less than six weeks into the school year, we
requested an ARD meeting and moved him to an autism program at a
different school.
We are four years further down the road now.
The social
differences are much more noticeable at age nine than they were at
five. Instead of getting better, in many ways, the disability has
worsened.
I don’t know what it is like to lose a child. It breaks my heart
when it happens, because I’m not sure if or how a parent ever recovers
from it.
Yet I know brave souls who somehow go on after a child’s death. I can’t imagine what the grief is like.
There is a kind of grieving that exists as well with having a special needs child.
My child is very much alive, and I am so grateful,
especially since I have witnessed his seizures and considered the
possibility, if just for that split second, that he was dying.
But the hopes and dreams I had for my child die a little more each
day as I watch him move forward in life. When he was just five or six, I
had hope that he would outgrow certain behaviors with age, that he
would function better. It was that hope that kept me going. Yet here
we are at age nine, and while some behaviors have improved, others have
declined.
It is hard to hope when your child pushes against an ever stronger current.
Adolescence is just around the corner and it is scary.
The grieving never ends.
If you let your guard down for even a moment, some terrible incident will come slamming into you,
reminding you that your child will never be like the others. He will always be different.
Slam.
To accompany the grief, there is its sister–guilt.
Guilt that I did something to cause it.
That I should have noticed the signs sooner, gotten more and better treatment, sought a different course or path.
That I should be doing more, reading more, helping more, trying harder.
That I should spend more time, more money, more effort supporting my child.
That I should experiment with a different therapy, a different drug, a different teacher, a different diet.
And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying —
there’s always a judgmental comment or stare to put me back in my place.
Sometimes it brings me to uncontrollable sobbing.
I can’t make the grief or the guilt go away.
My thirteen year old and I got into a shouting match one day about it. “Why don’t you and Dad do anything?
Why don’t you make him behave?“ he yelled.
With hot tears washing my mascara away, I argued back, “What would you have me do?!? I’ve tried everything!! Please,
tell me what to do!! Tell me! Is there another book to read? Another therapy? Another anti-psychotic drug? I’d love to hear your suggestions!”
Not my finest parenting moment.
And yet if there was one thing I’d want parents of non-special needs kids to know, it’s to
please be aware that we — the moms and dads of those “special” kids — are hurting.
Yes, we love our kids. No, we wouldn’t trade them for anything in the world.
But the love we have doesn’t take our pain away. In fact, it just intensifies it. Because we can’t take
their hurt away. We can try and try and try,
and we DO, and it might even help a little, but we can’t make the pain that accompanies disability go away.
When you look at us like we are weird, when you stare and ogle, when you move your kids away from ours, or worse,
NEVER include our child in your child’s activities, it’s like rubbing salt into our already raw wounds.
For my son’s ninth birthday, we sent printed invitations to school.
We invited the entire special needs class, as well as the entire regular
class. The invitations indicated that we were serving pizza and that
families were welcome. We wanted to make sure people showed up. So we bribed them with free food.
Fortunately, all my son’s special needs friends came. We have to
stick together after all, because special needs kids don’t get invited
to that many parties.
One boy from the regular class came. One.
That’s enough to just break a momma’s heart right in two.
My anxiety directly correlates to Travis’ behavior. When he’s doing well, I usually do okay.
When he struggles, I get worse. I’m sure it could be defined in some complex mathematical formula. All I know is that when he hurts, I hurt more.
And he always hurts.
So next time you are at the Chick-Fil-A playground, or at a church
picnic, or a Cub Scout campout, try looking at those “weird” kids and
their parents a little differently, please? Try to remember that as
unlovable as that child might seem to you, the parents are desperately
in love with their baby. They are hurting.
And by being a friend instead of a judge or a finger-pointer, you might just make somebody’s grieving a little easier.
http://sheridacon.com/2013/12/17/unique-grief-special-needs-parents/#
Thank
you. You have so perfectly articulated what it feels like to be a
parent of a special needs child. This blessing has demanded that we
grow and change in a way that I feels others will never understand, we
have the gift of seeing the world in a much more basic way. We are
blessed to see what is truly important, to love and to receive love.
Thank you for fighting the good fight.
Thanks, Amy. I agree
wholeheartedly that having a child with special needs has helped me to
grow and to have more compassion and empathy for others. While painful,
it is a unique blessing -- I love how you put it -- a gift of seeing
the world in a much more basic way. I feel like my child with
Asperger's is how God has opened my eyes. Thank you.
First, I so enjoy reading your
posts. This one made my heart ache for you and your son. I know I'm
only one of his teachers, but you are doing a phenomenal job and I so
appreciate you. Know that you are teaching the public with every
experience you encounter.
Belinda, you are such a wonderful
teacher for Travis & an encouragement to us. We love your heart
for special needs kids & always feel Travis is safe & well cared
for when he is with you. Thank you.
Sheri, I am sorry that your grief
is relentless, but I understand for it visits me often too. Take a
lesson from the boxing ring--when the bell rings to signify the round is
over, the boxer goes to his corner for rest and to have his wounds
tended to. He doesn't feel guilty that he is not still in there punching
away. Enjoy your well-deserved vacation.
Rubye, it seems like you know
this author, so please forgive me if I am overstepping my bounds. I
just wanted to point out, your analogy is a good one and I wish I could
share your sentiment. But, as the parent of a child with special needs,
the bell never rings. The 'fight' is never over.
Not at all, JoJo. I was just
commenting on her opportunity to have a vacation and "step to a neutral
corner" if only for a few days. She said it was the best vacation ever
and I was happy to care for her family so she could go. Thanks for
supporting Sheri.
Jojo, I see that Rubye already
replied, but yes, she was referring to our much-needed vacation in
Jamaica! Rubye is my mother-in-law and she kept the kids for us so that
we could get away!! She's the best!
There are things in a protected
environment like home that the child can do well in their own eyes and
not harmful in yours. Those can often be a respite from the boxing ring.
Warren, this is great insight and helpful to me.
I have walked this road too. my
son is 20 and there are still times I ache...still times I am angry at
God...not for giving me a child with a disability but because It seems
unfairt that he will always have to struggle. yes there are times of
celebration and laughter and no I wouldn't trade him for
anything...but...
Oh, Kathy, yes. There is so much
joy & learning. I am grateful for my son because he has taught me
so much. Yet at the same time there is sadness. Prayers for you this
morning.
It's good to see that others feel
this way too. I tend to run into the parents that don't understand why
I feel sad sometimes. They seem to be perfectly content with their
child's diagnosis. While I admire those parents, I thank you for
posting something that doesn't leave me feeling more inadequate than I
already feel much of the time. I felt the most grief during the initial
year of my son's life. The day after he was born, we found out that he
had Down Syndrome. It's not that I didn't love him, I love him more
than anything, but I was devastated. I cried every day for about the
first six months of his life. I believe I was grieving the baby I
thought about the entire time I was pregnant. I didn't get that baby,
therefore I grieved. I guess it felt somewhat (but not exactly) like
losing a child. People didn't really understand that, but it was real
grief. I used to absolutely hate it when people would tell me what a
blessing I was given to have a child with Down Syndrome... I agree that
my son is a blessing, but I didn't and still don't agree that him
having Down Syndrome is a blessing. I would do anything to take away
his struggles. I do agree that there is much joy that raising a child
with special needs brings, but there is also a lot of heartache. I
always feel like I have to be strong and hide the heartache, because the
minute I let my guard down, the corny sayings start, or I get the
confused head tilt, "Why do you feel that way?" He's 5 now, and I don't
feel as much grief anymore. He's a little sweetheart and he's healthy.
Now that's a blessing! We do get a lot of flack for his behavior in
school, and we try so hard to help him learn. It's a long process that
most people don't understand. In IEPs the educators and therapists seem
look at my husband and I as if we are inadequate parents, making all
sorts of "helpful" suggestions. I just sit there thinking, "Do they
really think we haven't tried that?" I've finally arrived at a place
where I'm learning to separate my ego from his behavior. I know how
hard I try and work with him. Now I put a little bit back on them.
I've learned to ask them questions like, "What tools do you have in
place to help him with that (behavior)?" It kinda stumps them
sometimes, but it opens up the idea that his behavior at school isn't
ONLY the parents responsibility when it comes to a child with special
needs. It's an entirely different environment than home, and a whole
different set of rules. I know that schools have access to resources
(i.e., behaviorists) that can help them too. Anyway, I'm rambling on...
thank you for your post.
see more
Christy,
How I wish I could
hug you right now! Thank you so much for honestly expressing both your
love for your child and the pain that comes with such a diagnosis. I
especially feel for you because unlike an autism diagnosis (which
usually takes place after a long path of trying to discover what is
wrong), a diagnosis of Downs happens definitively at once and must feel
like a ton of bricks falling upon you! How my heart goes out to you!
If you haven't read a piece called "Welcome to Holland," by Emily Perl
Kingsley, please do so immediately! Just do a google search and it will
pop up. It expresses this idea of grief mingled with joy better than I
ever could. Also, I just finished reading a book by Gillian Marchenko
called Sun Shine Down. She has 2 children with Downs (one her natural
daughter, the other adopted) and the book is her memoir from when her
daughter was born and the roller coaster of emotions she went through. I
think you would really be able to relate. Undoubtedly there will
always be some heartache that walks hand in hand with his diagnosis but
there will be so much joy and love and wonder (as you have already
experienced). I have found that many people who mean well but who have
not experienced special needs close up often don't understand this dance
of grief and joy, hence the puzzled looks. Just know that you are not
alone. There are many who do understand and "get it." Thanks so much
for reading and for sharing your experiences. Much love to you, dear
friend.
Sheri, I read this and just
cried. You put my feelings and thoughts down so eloquently! I also
wanted to let you know that there is always the possibility of a light
at the end of the tunnel. My son has been diagnosed PDD-NOS. His doctor
prefers that diagnosis over Aspbergers because of the way that it can
effect his IEPs at school. Kyle is 16 and for exactly a year now we have
been non-medicated! We haven't had a violent episode where the Police
were involved since March of 2012. He still attends school in the
special school district but things are going better than I'd ever hoped
for! I wish the both of you and the rest of your family the best. Always
stay positive and cherish the moments, good or bad.
-
Pervasive developmental disorder,
not otherwise specified. It is one of the three autism spectrum
disorders and although typically considered to be on the more mild end,
this was not the case for my son Kyle. We started getting help for him
at age 3. There have been more diagnoses and medications than you can
shake a stick at and it has been a long frustrating journey. His doctor
also states that he is ADHD. I'm not sure what the turning point was
for my son and for many children being non-medicated just isn't an
option. There are many days that I think, "don't let this be the day
that something bad happens." Even his doctor is amazed when we go for
visits. In no way is my son like what most people would think of as a
normal child, and he never will be. I worry about how people perceive
him and what people think of him but he is blissfully unaware most
times. In those instances where it does bother him, he internalizes it
and refuses to talk about it. My biggest fear is what would/will happen
to him if/when I am no longer here. Will I have prepared him enough for
life on his own? What if he cant live on his own, where would he go or
who would he live with? And most importantly, will he be happy? Or
lonely? I read a comment from another young lady here that stated she
had no guilt or shame, I wondered if she had no fear as well.
PDD-NOS = Pervasive Developmental Disorder, not otherwise specified. It is on the autism spectrum -- i.e. Atypical autism.
Thank you, I hope I didn't seem rude in asking and I mean no harm. I have a son on the spectrum as well.
I didn't find it rude at all, in
fact, I appreciate that you asked. For me, I seem more comfortable just
saying PDD or even Aspbergers but not autistic.
Ann, I don't think anyone would
think it was rude. There are so many letters and labels within in the
special needs realm, aren't there?!? Sometimes its hard to wrap your
head around them all! Thanks for posting!
Oh, Kate! I'm moved to know that
you found this post so meaningful. It is a hard road, but I am so
encouraged to hear that your son has been non-medicated for a year! By
the way, I also have a son named Kyle (my 13 year old -- not the son
with Asperger's). Thanks for reading and for your words of
encouragement!
"Normal is just a dryer
setting"... Please don't take this as an attack, but I'm saddened by how
thoroughly autism has discouraged & defeated so many parents. I
pray you come to accept your child & their lives' paths without the
guilt of your preconceived expectations & perceived failures.
I've
never- not for one single moment!- felt ashamed or pained by my
daughter. She is autistic, and perfect. We, as parents of a special
needs child, have chosen & committed to celebrating the victories,
not wallowing in the defeats.
Restrictive diets work, one-on-one tutoring works, LOVE works (just
don't expect cuddling in return), repetition works, HOPE works
(regardless of your child's initial reaction), despair DOESN'T work.
The
pizza party paragraph made me cringe. I urge all parents of ASD kids to
get a food sensitivity test done & work with a nutritionist
experienced in special needs restrictive diets. You will be amazed. Once
you start thinking of foods as they affect your child, you'll be able
to identify & eliminate triggers of destructive behaviors. If your
child is in pain, it could easily be the food.
Any successful ASD
adult will tell you that their success is directly linked to their
parents' relentless pushing, stretching, and encouragement- those 3
words were taken from Temple Grandin. Alexis Wineman told my wife that
her parents "pushed and often shoved" her beyond her comfort zone to
succeed (that's her quote up there at the start of my rant).
Pain & Grief for your situation serve no positive purpose in your special needs child's life.
Robert,
Thank you for your
comment. I am glad for you that your daughter's diagnosis has never
caused you a single moment of pain, but I assure you that is not the
case for most people. I am sorry if my post led you to believe that I
am defeated or in despair, because that was not my intention. I love my
son deeply and he brings a level of joy to my life that I would never
have known without him. We also choose to celebrate our son's victories
and progress rather than wallowing in his defeat.
However, he struggles. It is hard to watch your child struggle, to
cry daily because he isn't accepted. It hurts to know that social
situations will always be difficult for him, especially since he is a
child who craves relationships (and we feel very fortunate that he
does). Grief is the feeling experienced after loss, and any loss can
qualify. Knowing that my child has a diagnosis that has and will cause
him pain is a loss of sorts, even though I don't feel it is reason to
despair. I did not give myself permission to feel grief over his
diagnosis for a couple of years, and I feel it is so important to
acknowledge the grieving process for special needs parents.
I also do not feel guilty all the time, but I do think this is
something ALL parents struggle with, and especially special needs
parents. You say that my pizza party made you cringe, and that is fine,
but any time I hear a list of all the things I'm supposed to be doing
(restrictive diet, one-on-one tutoring, repetition, etc.), to be honest,
I cringe. I cringe because I know all those things already. I've read
all the books, gone to the workshops, tried most everything and still
felt like I was failing. And that was the point of my original post.
We special needs parents can work ourselves to death and still not
change the diagnosis, and then we feel even more guilty because we
haven't tried everything.
Also remember that every child, parent, and family are different. What works for one may not work for another.
I misunderstood. I read despair in your words.
Our
approach to raising our special needs child starts with our attitudes
(same as our approach to raising our non-special needs child). Attitude
is everything. Hope, creativity, & stubbornness have gotten us this
far- if just one parent of a special needs child "gets" what I'm saying
& benefits from it, I'll jump for joy.
As the parent of a severely
affected son with autism, I cannot help but take offense to this post.
LOVE works??!!?? If LOVE worked, we would not be having this
conversation because I couldnt LOVE anyone any more than my son. Autism
has taken his voice, his independence, his health,his future, the
ability to marry, work, care for himself, Autism has made damn sure
that i will never rest in peace. AND YES We have done all of the
therapies you mentioned above, because it worked for your child, please
don't preach to me and tell me that if I just did MORE i would see more
progress. THIS is the attitude that keeps us guilt ridden and isolated.
I can say more, MUCH more, but i am too damn tired and too scared of
being AMBUSHED by a strong beautiful boy who can throw me across the
room and destroy my house in seconds flat. Then when he comes out of
it, he sobs uncontrollably and feels so much remorse and gulit. Please
point out the blessing in THAT! I am sick and tired of being
invalidated by people saying if you just do more. I am beyond insulted
and can't believe that a fellow ASD parent would be so willing to throw
us who have children on the severe end under the bus. YOU DO NOT
REPRESENT ME! And Sheri, i am sorry to hi-jack your beautiful article
but i am sick and tired of being preached to by people who obviously know it all.
Sorry that I offend you so much.
There's no bus here, and I wouldn't presume to represent you. My job is
to represent my child, & I chose to share what helps her- again,
sorry that it offends you.
I see that I was preaching (according to the dictionary), & I
will continue to "preach" hope & determination as long as I live.
You say despair doesn't work.
Fine. It's still present sometimes whether we want it to be or not.
Love, hope and repetition do work in some areas. Other areas are always
going to have deficits, no matter what we try. I'm glad you've found
things that work for you. That's not true for all of us.
From the moment we are born and
see that we are different, as in being able to sit, stand, talk, etc, we
are all driven to be like others. For me it is inconceivable that the
child is not hurting. If the child hurts and the parent doesn't feel it
with them, then the child's pain seems to be ignored and taboo. That
never solves the problems with others or the future.
This is the first post of yours
that I have read...and it brought me to tears. My story is similar to
yours and reading your words made me feel a little like I was being
hugged. Thank you for articulating the fears and joys and questions that
live in my heart and head every day.
Thank you for reading, Bethannee.
I wish I could hug you for real right now! Sometimes it's just good to
know we are not alone. And you are not alone, dear friend. Much love
to you.
Heart Rendering and so so true, hang in there Sheri, we all have to ... our little warriors are our lives and our very souls.
Thank you, Zarir! So true!
I manage swim lessons that feed
into the local swim team. At the end of the session, I send out emails
to the parents of the kids who we think are ready to try out for the
team. One of our little guys in lessons clearly had autistic "issues"
BUT, he was a good little swimmer. I sent his parents an email
invitation to try-outs. The next lesson, they came to me sure that I had
made a mistake. Their son had been "chosen"; he had been found "worthy"
of trying out for the team.
I assured them that it was not a mistake - their son had earned the
opportunity just like the other kids. It broke my heart that their past
experiences had conditioned them to expect exclusion. I assured them
that I recognized his autism "issues", acknowledged that he would have
some special issues with the team and welcomed him to tryout.
I am happy to say that this little guy is doing fine. Does he
have"stuff"? Yep! and he always will. BUT, can he swim? Is he having
success? Is he being included in a "normal" activity. Yes, yes he is.
To the parents of kids with special needs: please keep trying. Keep
advocating for your kids. Keep looking for those opportunities. You
never know where you will find them.
Blessings!
Thank you, Denise, for your
encouragement and for your inclusive attitude as a teacher. We have
been fortunate in our journey to encounter many teachers with the same
mindset and we are so grateful for them. Unfortunately, there have been
many who have been unwilling to overlook the disability to see the boy
behind it! Thank you, thank you, thank you! I couldn't agree more.
WOW. Reading this sent me into
tears. My Aspie is in 11th grade. We're talking SATS and college. He's
on the genius cusp. He's so smart. And funny. And amazing. But he hates
schools and tests. And all these *dreams* I had for him are unlikely. We
will be relieved if he makes in into local state college. I should
consider myself lucky. Things could be so much worse. But he's brilliant
and amazing and *should* be doing something more.
My friends don't understand. They just see this smart kid. They don't know the daily struggles would never understand.
Terra, your son sounds a lot like
mine in a few years. Definitely in the genius category and yet he
struggles so much socially. It's good to know there are other parents
out there who "get it." May God bless you as you continue to parent
your Aspie, and lead him to the right path for his life as well! Thanks
for reading!
Just to help you feel a little
less separated, I recently had my son's birthday party and only 3 of the
invited 15 showed up. He has no special needs and is well accepted in
his class. Parents these days just don't bother showing up or even
RSVPing these days. I don't know why. It's nice to know that the special
needs class all showed up and that involved parenting and community
support still exists somewhere!
Thank you, April! Yes, we have
dealt with similar issues with my other three children as
well--however, none of them deal with the problem of being stigmatized
that my autistic son does. It's hard to explain -- I remember when I
first applied to get him tested and I kept telling the doctors that he
was just "different" and I couldn't explain it. I just knew they were
all going to think I was crazy! Now I realize that it really is
different! And yes, the special needs parents at my son's school are
wonderful -- we are very blessed.
My kids always have the problem
with friends being at the "other" parent's house for the weekend we are
doing their b-day parties and so only 2 or 3 kids can show up. It's
sad. Hurts my heart when my kids BEG for certain friends to come play
or come to their parties and they can't. I don't understand it just
because they are at the other parent's home why they can't still go to a
b-day party of their friend's.
Thank you, Sheri, Janine, and
others for sharing. A productive, inclusive discussion on an
enlightening topic must always begin with tolerance, civility and
diverse opinions.
When I read some comments on the thread attacking Janine, I couldn't
help but wonder why the bitter divisiveness? Why can't we all respect
each other's experiences and input, even if someone else's pain or
perspective is different from our own? Must we all think alike to make a
valid point on this post?
Janine, contrary to what A Mom says, your comment was not "ill
timed". The beauty of the web and social media, is that this forum is
open to all whether you are a parent of a special needs child or not.
Janine has as much of a right to comment on this thread as A Mom or ANY
child of God.
Sheri's post definitely struck a nerve. I am the mom of three
beautiful, healthy, non-special needs girls. The doctor told me blood
work for my first 2 pregnancies showed a risk of Downs Syndrome sending
me into depression and days when all I'd do was cry. My third baby was
unplanned during financially uncertain times so I suffered from ante
partum and post partum depression and often considered that death would
be preferable to life. Though the grief most parents on this thread with
special needs children is different from my ante/post partum
depression, my grief was very real. I think it's helpful to acknowledge
that: we all hurt in different ways, one parent's grief is not superior
to another's, and we all need strength and grace from God to meet the
daily challenges of being somebody's mama.
I empathize with all parents.
Just as I respect Sheri's post, I respect Janine's comment. @'A
Mama', Janine did not feel "the need to go to the trouble to say
something condescending and not-helpful". In fact, she merely offered
insight into her family's personal experience. That experience provides a
different lense for looking at the isolation and grief that parents of
special needs kids might feel. Most comments on the thread were tending
towards "families with non special needs kids are bad or insensitive if
their 'normal' child turns down a play date or steps away from my
special needs kid due to the fact that my special needs child (may)
display(s) violent behavior". I believe that's why Janine chimed in with
a thoughtful look at the 'whole picture'. Sure, special needs parents
know why their kids are excluded. The other side of that coin reveals
that unpredictable, violent displays by special needs kids in the
presence of non special needs kids are no less frightening although the
violence is involuntary. Sensitivity has nothing to do with a child
feeling frightened by a child acting out due to a disability. That's an
important distinction she makes and her comments make the grief of
special needs kids NO LESS VALID. Attacking and being critical of
parents with different experiences is hurtful, mean-spirited and
unnecessary! The focus should be the children-- bringing them together
and protecting them at all times, where possible.
My niece has autism and displays violent behavior. While I educate my
girls about her condition and encourage them to engage her during
visits despite my niece's preference to be alone, my job as a parent is
to protect my kids first when my niece displays involuntary violent
behavior. I am not capable of managing my niece who is almost as big and
strong as I am; her mom and siblings are familiar with her most and
know how to help. I believe we are all doing the best we can to protect
our kids. If one's child is near a child who is exhibiting violent
behavior, it is not reasonable to expect that parents would tell or
expect their kids to stay put when in a potentially harmful situation.
There is nothing insensitive about this mindset.
It's not fair or right to VICTIMIZE parents who raise their children
to remove themselves from violent situations. Doing so is divisive and
could unintentionally cause parents of regular children to opt to avoid
events where aggressive displays may occur altogether so please keep
this in mind when regular kids step away from an involuntarily
overstimulated child who kicks, hits or bites. It seems parents at risk
of being victimized or deemed insensitive for protecting their in a
social setting from violent special needs kids are darned if we do (tell
our kids to step away for safety's sake during a violent episode),
darned if we don't (attend a function for a special needs kid known to
display violent behavior). We all have stress in our lives and no one
wants more. I'm not being condescending, here, just suggesting a
perspective that involves all parents' concerns rather than
automatically writing off anyone who rejects an invite from a special
needs child as "insensitive, etc.".
When Janine asks what the difference is between her daughter being
turned down for a party/play date vs this other child, she is relating
to special needs parents' plight by pointing out that isolation is
isolation. My daughter wanted a play date at our house with a kid from
her private, Christian school who lived 25 minutes away and I remember
thinking it was because we lived on "the wrong side of town". Then I
realized we'd have to go to their house if we wanted play dates or meet
up near their place and set up play dates with class mates who live
closer or didn't mind driving to us-- in other words, find alternatives.
Our family was a lot happier with this approach.
So back to dealing with the grief and find solutions... Aside from
releasing on forums like this, a constructive start is to find a
community of peers wherever that might be. Whether parents of special
needs or non-special needs kids, we must all accept that community
might not look like what we had hoped, understand the perspectives of
other parents, and then be grateful for the community/family that we are
able to create. We can't force people to be our friends, nor can we
force kids to be our kids' friends. We can only invite them to our
events and let God do the rest. May God bless us all!
Mistee,
Thank you so much for
your thoughtful reply. I agree that this is an ideal place to have open
and honest discussions about issues that are not easily resolved. You
are right that all of us face isolation and grief and that this is part
of the human experience. My desire for this blog is never for it to be
divisive but to be inclusive always!
You bring up a very valid point about protecting children from
violent behavior and I couldn't agree more! We struggled A LOT with
aggression in my autistic son when he was younger, and as a result we
had to remove him from many situations where it just wasn't safe. I
don't think any special needs parents would actually condone violence or
have the expectation that others need to just "put up with it" because
of the disability. Our policy with our son is that "Asperger's is no
excuse," and this is true. He is ALWAYS disciplined appropriately
whenever aggression is displayed. Also, I want to point out that the
parents are the ones who recognize aggressive behavior the most, as we
are usually the ones taking the brunt of it. When my child was at his
most aggressive, I was the one he took it out on most. We did
everything we knew to do, including an intense psychiatric day treatment
program as well as the introduction of anti-psychotic drugs, but none
of these were easy steps to take. It is an extremely scary place to be
when you have a child who displays violent behavior, and parents who
deal with this are well aware of that. So, I don't think it is anyone's
intention to victimize those who choose to protect their children from
said violence -- we ALL want to protect our children, as we should.
That being said, I DO think it is important to educate and inform
people in our society (including our children) about disability, social
differences, etc. and develop a more compassionate and loving stance
toward those who are different than we are. In the instances where we
need to keep our children away, it's important for them to know why --
to know why certain children act differently, or talk differently -- and
above all, I think it is crucial to teach our children that compassion
and kindness are never out of place.
My original post was more of a plea for kindness and understanding
than anything else. Because so many of us with children who have
behavioral problems associated with disability face unfair judgment and
stigmatization, I feel the need to let others know just how that feels.
So many people don't realize that there is a disability behind the odd
or yes, even aggressive, behaviors and their reaction is to simply judge
the parents.
I am the first to admit that I was guilty of this for a long time. I
was a perfect mother before I had children, LOL! I taught school for
nine years before having a baby, and I thought I had it all figured out
-- that those kids who couldn't behave obviously just had bad parents.
Well -- I was wrong. Dead wrong.
Certainly, a lot of behaviors out there are due to nurture, but so
many are also due to nature -- and they get so mixed up that it's often
hard to know which is which. Even my three "typical" children have
behaviors that I think are directly associated with their personality
types, not just with my parenting mistakes (although they have plenty of
those as well!)
And I can't emphasize enough that one of the best ways to reach out
to a CHILD with special needs is to love his parents -- which is the
purpose of my post. The parents are more aware of the big picture than
the child is, and that is why our pain can be so devastating. We need
to know that people love us and can show kindness and compassion toward
us as we struggle through life, just as much as anyone else -- even
though our struggle may just look like bad parenting to some. That's
why this kind of open dialogue is so important.
Thank you, again, Mistee, for your comment, and I ALWAYS welcome civil and honest discussion! God bless you as well!
Thank you so much for your
respectful and well articulated comments. This is my first time reading
this page and I was very moved by the post because I share many of the
same feelings. I think the reason why we feel them so profoundly is
because we are confronted by "the bigger picture" all the time and we
feel that It's nearly always our child who gets the raw deal. We are
torn between our understanding if the needs of others and our love for
our child sometimes multiple times a day. Please forgive us if we get a
little sensitive at times.
I have been particularily touched by the people in my life who have
looked at us and our struggles and unflinchingly acknowledged them much
like you have but then had the courage to say, "How can we do this?" Who
don't just leave it to God but ask what they can do.
My own parents came to me and said, "We love A-- and want to include
him and don't want him to feel left out but we aren't comfortable
handling him sometimes....What can we do for him?" How can me make this
work?"
A church volunteer came to me and said, "Tell me about your son. We
understand he has some unique needs. What do you need from us?"
As a special needs parent I wish more people would look me in the eye
and acknowledge the difficulty I already know too well but also have an
open mind and a willingness to work on a mutually satisfying
relationship. All we want sometimes is a chance, a possibility, a little
hope.We are some of the last people who would want anyone
uncomfortable. I don't know if its misplaced politeness or what but what
we usually get people avoiding us which can be very hurtful and lonely.
Lori, yes, yes, yes! We as
special needs parents are more aware of the problems and difficulty than
anyone, because we do deal with it daily. . . but we just want to be
acknowledged and for people to show they care. This statement "I don't
know if its misplaced politeness or what but what we usually get people
avoiding us which can be very hurtful and lonely" hits the nail on the
head. Thank you for posting.
I really feel you about the
guilt. It's so hard for me to not feel like I did something, should have
known sooner...something. It really is so important for us to see the
magic in our children...
Guilt. . . it's a constant struggle. Thank you Kristi, for your honesty.
Beautifully written and I think it speaks to many, many people.
My daughter is 15 now and was diagnosed with Autism at 2 1/2. We had
an inkling (thanks to much research) prior to that, but it was still a
grieving process; mourning the loss of a child we thought we had.
I remember distinctly (as if if were yesterday-it remains that clear
in my mind owing to my mixed emotions of guilt and pride) when she was
about 3 and I had my then 2-year old sleeping in my arms. I was walking
with my daughter into a store that had only a few customers. My Autistic
daughter said something that sounded a lot like, "I see you, Mom." I am
CERTAIN this is not what she said, but it was close enough to pass for
this. I immediately said, "I see you too, Allie!" and proceeded to
desperately seek out any other adult who noticed that MY kid did
something normal. MY kid. No one saw it and I was disappointed and
riddled with guilt that I wanted this.
Moments like this come less frequently now as we have long since
moved into the acceptance stage. But your message eloquently captures
the isolation, guilt, shame, fear and exhaustion that millions of
Special Needs parents experience.
Thank you for sharing your story; sometimes the road is paved with
many potholes (so many more and unique ones that the parents of
"typical" kids have) and it does provide a certain sense of comfort to
know that we are not alone.
Keep on keeping on!
Cindy
Yes, Cindy -- "mourning the loss
of the child we thought we had" -- that's it exactly. It is so
encouraging to be reminded that grief is a process and that as we move
into that acceptance stage, things will be a little less bumpy. I LOVE
the story of your daughter telling you she saw you. How beautiful and
what a sweet, precious memory for you to hold onto. Thank you for your
encouragement and for reading!
Thank you. This is exactly how it
is and what we have run into. Our son has autism. My husband has
autism. My son has HFA and my husband is an Aspie. It's so hard for him
to work even, because people sometimes treat him so badly. And it makes
it worse to look at our son, and know he may face that as an adult. Or
to have people pull their kids away and order us to go away because of
ignorance. The things people say...
Thank you so very much. I wouldn't trade either of them for anything.
They are more real than many of the people I see every day.
Thank you, Crystal! I agree that
there is something so refreshing about HFA/Asperger's and this is one
of my favorite things about my son--that he is who he is and doesn't
pretend to be anyone else! I think the hardest thing about
high-functioning people on the spectrum is that they look "normal" and
so their behaviors are judged even more because the disability is
invisible. Please know you are not alone!
I have a daughter with special
needs and honestly and sadly the unique grief you express is with myself
and my wife as well. She can't walk because she had a brain bleed at
birth which in turn caused high muscle tone in her legs. I know its no
where near as bad as some are and we're thankful for that but because of
her condition I'm starting to notice other characteristics as well. She
has crazy fits where she just doesn't calm down no matter what. If this
happens in public we get some pretty crazy stares. She has a twin
brother and they will be 4 years old in January 2014. She also seems to
act much younger than her brother and other kids her age. Shes very
smart but at times I wonder because she acts as she's still a baby. I've
read and our doctor has told us its common in special needs kids. I'm
just worried that in school she will be the one left out, not invited to
parties, and get left behind. Its definitely a different kind of grief.
Keith, my heart goes out to you
and your wife! Hopefully it will encourage you some to know that my son
with Asperger's is also a twin. My husband and I credit many of the
positive behaviors that he has learned to the fact that he does have a
twin sister, a "typical" example to follow who has been by his side
since birth. We believe this is just one of the reasons God chose to
bless us with twins. Prayers and love to you in your special needs
journey!
From one mom of a special needs child to another, thank you. It's comforting to know I'm not alone.
My two daughters with multiple
disabilities are in their mid-20's now, but the pain doesn't go away. It
changes -- it comes in waves -- but it never ends. I have so much I
want to say to you, but for now I just want you to know that YOU ARE NOT
ALONE. And please know that you are doing an amazing job, and that you
are an AWESOME mom. Please try to find some time to take care of you --
as impossible as that sounds. I used to make jokes about how it would
never happen, and then I found myself very ill and in the hospital, and I
had no choice. Taking care of YOU is one of the best things that you
can do for your child. Keep writing. You have much to offer other
parents that are on similar paths. Be gentle with yourself... Keep
reaching out. And don't ever believe that you are alone.
Thank you so much, Jo! I think
you hit the nail on the head with the idea of pain coming in waves.
I've already experienced that just in the five years we've been on this
journey. Thanks, too, for the reminder that I (and all of us special
needs moms) need to take care of ourselves. I couldn't agree more.
I've struggled with debilitating anxiety for several years now because I
wasn't being gentle with myself. . . it's still a daily struggle. So
thank you from the bottom of my heart.
Thank you for sharing. My son
has CP and is 13 and I have had a few of those bawling my eyes out the
older he gets.. I understand the grieving everyday for the loss of the
life I so desperately would want for him.
Holly, you are so welcome. My
heart and prayers go out to you tonight. It's so hard to be a special
needs momma isn't it? Love and hugs to you!
Sheri, I really appreciate the
honesty of this post. Loss and grief go hand-in-hand and especially when
you feel a loss for someone you care about so deeply the grief is
unavoidable. I came here from your comment on Emily Wierenga's blog, and
am wondering if you have written posts specifically on your experience
with the church community? If so, could you point me to one? I really do
appreciate your honesty and am always looking to grow my understanding
of what families with children with special needs experience as part of
church community. Thanks!
Keith,
Here are some links to a few previous posts about our experience with special needs in the church:
http://sheridacon.com/2013/08/...
http://sheridacon.com/2013/09/...
http://sheridacon.com/2013/11/...
I hope the links work. If not, look on the blog under the special
needs category & you'll find all of these there! I write a lot
about this topic because its what we are living through right now!
There is so much potential for ministry in the area of special needs
& it always encourages me when leaders take an interest in learning
more. So thank you!
While it is usually not a kid
with a disability's fault he is excluded from fun, family or
outside-of-school activities, there is the odd time when said kid's
(likely involuntary) actions are a contributing factor. K is a little
boy with autism and Tourette's who has been my daughter's classmate
since kindergarten and without a doubt tries very, very hard to play
with the kids in his class... but has also spent years and years yelling
"vileword, swearword, J is so fat!!" at my kid (an average of 19 times
per day, it's an involuntary vocal tic, I am told; his para thoughtfully
keeps track) and any number of her classmates for years. YEARS. My kid
copes displays more grace towards K than I'd be capable of but flat-out
refuses to spend a single second outside of school with him and I cannot
blame her. We live in a very small town, there is exactly ONE school
and ONE third-grade class. K doesn't get many birthday party invites
(which is very, very sad, but, well, 5 days a week of insulting my kid
is all my kid can take).
I require my child to be polite to K, as civility is pretty much what
keeps the world from descending into anarchy but I cannot make her like
him. (One of the more heartbreaking calls I ever received was several
years back from K's mom, inquiring why J was nice to him at school but
declined all playdates). At work, I would not put up with anybody
treating me the way K treats my girl... but my kid has no choice but to
suck it up.
While this will not be a popular opinion, it is worth looking at
whether those who are excluding the kid that you clearly love and adore
for a valid or at least somewhat understandable reason.
Janine,
Thank you for sharing
your perspective. It is a difficult situation, obviously, when the
behaviors caused by disability are extremely disruptive. It sounds to
me like there is a big communication gap between teachers, parents and
students that is causing more pain than is necessary. If the child's
actions truly are involuntary (as they are with Tourrette's) then the
other children really need to be taught that these are symptoms of a
disability. It is good that you teach your child to be polite to the
other child, but in my opinion, children need to be taught compassion
and sensitivity even more. Seems like the school system is missing out
on that opportunity as well as on the opportunity for redirecting
undesirable behavior. Not sure what the school district is like in your
area, but it sounds like sending her autistic/Tourrette's son to the
ONE school is the only choice this mother has. And by federal law, the
public school system may not exclude a child due to disability.
While I do think your opinion is valid, and I understand that you are
coming at it from a protective stance for your daughter's sake, I would
urge you to consider that this is exactly how special needs parents are
approaching life every day. Our kids are constantly under attack, as
are we as their parents, by judgmental stares, comments, exclusion, and
just plain meanness.
As I read your post, my heart was breaking for the mom of this
special needs child. I cannot imagine the tremendous courage it took
for her to call you and ask why you declined her invitations. I am very
curious as to how you responded.
You are right that you cannot make your daughter like this child, but
you as an adult have the ability and tremendous opportunity to show
compassion and love and kindness to the mother of this child. That
would be such a huge step. You say that your daughter displays more
grace toward the child than you would be capable of -- which shows she
has a tender, teachable heart. I cannot understand why that would not
be the priority here--to nurture that innate compassion instead of
squelching it.
I have four children and only one has special needs. We have tried
our best to raise our children to be polite, yes, but we have emphasized
kindness and compassion EVEN toward people they don't necessarily like.
Yes, I have even made my children invite certain "undesirable" kids to
their birthday parties. As a result, I see my three non-special needs
children reaching out to and even befriending the "weird" kids in their
schools, and I know it's because of the compassion they've learned in
dealing with their own brother, and experiencing the heartache that
comes with having a loved one repeatedly rejected. I think you are
missing out on that opportunity with your daughter, and that is very
unfortunate. You say that you would not allow anyone at work to treat
you the way this child treats your daughter, and I agree -- but you
would be dealing with another adult at work. This is a young child of 8
or 9 years old, who has a disability DEFINED by involuntary actions
which are clearly causing him to be shunned not only by the children,
but by the grownups as well. Very sad.
see more
Shari,
Thank you for your thoughtful reply.
When K's mom called me, I gave her an honest answer -- that my
daughter did not like being constantly, albeit involuntarily, called
names by her son and for that reason did not want to spend time with
him outside of school. She was seven at the time and entitled to
politely decline a playdate.
My daughter hates being insulted and called fat. Absolutely hates it
but is now used to it. *Sigh* It's been 4+ years and is likely to
continue until they start high school. She is required to be (and is)
polite to him. She's nine and doing her very, very best. What more can I
ask?
K's mom gives a presentation on her son's special needs at the
beginning of each school year (and returns at the request of the
teacher, guidance counselor or para). The school has an anti-bullying
policy that seems to be enforced (and the teacher explains why K's
special needs seemingly exempt him from part of it), extends to birthday
parties and that I've always abided by, i.e. invite all the kids, all
the boys OR all the girls, or no more than 3 kids in a class of 22ish.
K's mom, K and the school are doing their very, very best too.
I do my best to teach my daughter (and son) kindness and to
demonstrate kindness and compassion. My kids are very comfortable around
folks with disabilities, including their dad (my husband is sees a tiny
bit but is classified as legally blind), have friends who come over for
playdates who have disabilities and are generally pretty accepting. I
too am doing my best.
And I do see your point about the importance of reaching out to
another kid, because it's the right thing to do. I might just invite K
the next time I have a bigger gathering for the kiddos at home.
(The dilemma I come up against is that J and my son too, on occasion,
has declined a playdate with a non-disabled kid that she said she
didn't like, e.g. Bob only wants to play Ewoks and she's over them.
Occasionally a non-disabled kid declines a playdate with one of my kids
and, well, that's fine. I have no issue with the fact that J does not
want to play with Bob, or that Suzy doesn't like my son and declines
playdates with him on that basis. And if it's okay to turn down an
invite from a kid you don't like, why wouldn't it be okay to decline a
playdate from a kid you don't like who happens to have a disability?).
@Leslie schmidt - I absolutely do not let my daughter be mean to ANY
kid; she's required to be (and ABSOLUTELY is) polite to him. Being civil
to a not-favorite classmate isn't quite the same thing as treating said
classmate poorly.
@ A Mom: The other kid's mom asked why my kid declined a playdate and
I told her the truth, as politely as I could. The alternative was lying
("J's busy every single time you suggest and will not be available
until the 12th of never"). If the situation were reversed, I'd hope the
other mom told me the truth. I don't quite get how (or why) this means I
have no social skills.
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Janine-You've missed my point. I
am taking about Sheri. She wrote this gut-wrenching post and poured her
heart out and yet you felt the need to go to the trouble to say
something condescending and not-helpful. I can't get through this post
without crying.
Trust me, we get it. Kids don't want to play with our children
because they are quirky or delayed or inappropriate behaviors. In fact,
parents like us probably have a binder full of goals and objectives and
behavior plans, spent thousands on therapies, researched hours upon
hours and probably cry at night about these very behaviors. No, this
isn't some earth shattering news you shared. Maybe you felt you were
enlightening everyone. Or maybe you were seeking more information. I am
not sure. But it seems ill-timed. Sometimes we parents just want to
seek solace with one another. Sometimes we just want a little
understanding. Instead of acknowledging, you just put more salt in a
wound on a post where a mom beautifully articulated her anguish. Yes,
there is a time for dialogue and education, but this wasn't the forum,
IMO. This is why you received the reaction you did. Sometimes educating
others and taking about this is exhausting and frustrating. Kinda like
hitting your head on a brick wall.
I commend you for raising a polite and thoughtful child. But for
those of us with imperfect children, it is reassuring to know there are
others like us who HURT and know there are people who acknowledge these
feelings and grief.
My guess is his parents hurt a lot too. It's your prerogative to
decline the invites. This mom sounds phenomenal and is trying her best
to help her kid. My guess she is probably very isolated and alone.
Sometimes we just have to go through life with the adage "Don't be an a**hat". (Sorry if this offends, Sheri).
Perhaps my responses to you come off crass. I should apologize but I
would be remiss if I didn't share my perspective as a special needs mom
of two beautiful, smart, and caring little girls.
Have a Merry Christmas.
PS-it's a REAL DISABILITY. It's not bullying, although it seems like you don't fully believe that it is.....
Autism rates are now 1 in 50 kids. Be thankful it's not your child.
With these rates, it's only time before it affects your family whether
it be a niece, nephew, dear friend... We will be only seeing more and
more kids with this disability in the classrooms so I think it's good
that children are understanding differences at an early age. This isn't
the days of Title 1 where the kids are sequestered to a special Ed room
and not seen or heard. This is the age of inclusion. Plus many of these
kids likely have an IQ higher than most of us adults. Many are geniuses.
It's just that others judge them based on behaviors, language
processing....you know, "differences". ;)
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Wow. Lucky for you it's not the
other way around. Pretty harsh. Nothing like beating a person while they
are down and pouring their heart out. Trust me, as parents we are very
much aware how our child(ren)'s behaviours affect their social life.
Nothing new. But thanks for calling attention to it. *sarcasm* Perhaps
you could use some social skills training yourself?
Can you imagine what it would be
like to say what you don't want to say? What if every time you saw this
boy with Tourette's your mind made you say, "Get out of here,
ret*&d! I'd like to knife you!" or something absolutely horrific?
That's what Tourette's is like. My mom has it. I grew up with it. It
made me more empathetic and kind. He CAN'T help it. It's not his
fault.
http://www.youtube.com/watch?v... Please watch this entire video. You really, really, really need to watch this and learn.
