It’s never easy! SO, let go of those pre-conceived notions. So many of us with special needs kids
struggle with everyday challenges....school IEPs, how to involve our children
in everyday activities...neighborhood friends, birthday parties (really? In Nicolas’ 14 years he has NEVER been
invited to ONE! And Maggie does better one on one-- gee how conducive is that
to a PARTY?), what it will look like when you go to a friend’s house for a BBQ
or just go to the zoo or the children’s museum.
It is never predictable. It is
ALWAYS NEW. This is something families/friends
with “typical” kids will NEVER understand.
And, what is even more difficult is most of our friends will never be
able to sympathize with or grasp the concept of how difficult it is to just go
to the grocery store let alone try to enjoy a family outing to the zoo or a
water park with our children. The
park? Oh, yeah, that sounds like fun,
NOT necessarily with a special needs kid!
The vigilance, the watch, the fear that our child will, either; wander
off, freak out another child, or hit someone is constant. SO...what we special
needs parents need to do, is adapt and find that new “normal”. Not expect anything. Not want for anything you dreamed of. AND, most of all....not compare yourself to
anyone! This is NOT easy...believe
me. I have been doing this for 14 years
now...and I have to say...it’s easiER....but not EASY. When a friend has a
child diagnosed with cancer, nowadays more often than not, a curable
disease....it is almost enviable (shock factor!). What my children have is NOT curable. What we deal with is NOT curable. The blood draws, the fear, the
hospitalizations, the wilderness programs....they don’t cure....they just help
us figure out what to do next. Maggie is
brilliant but not capable of having normal relationships or understanding how
she impacts others. She is several years
behind figuring out how to engage in social activities. She has a LOT of catch up to do. It is very painful to look around and see
other girls her age who are poised, well coifed, and dating or going to a
prom. It is really difficult to keep
from wishing and wanting what my friends have with their beautiful
girls...graduating with honors and going off to the college of their
dreams. Maggie is doing well in this
Wilderness program....but needs so much more than what this program can do for
her. She needs the consistency of
trained professionals catching her in teachable moments and working with her to
improve her reactions. She needs
frequent interaction with peers to understand how she impacts others and to
understand how to effectively react to other’s suggestions and criticisms. Bottom line, she needs tools in her toolbox
in order to be a successful adult living in our complex social world. So here we are...in the next phase of her
life....wishing there were a way out of this decision but knowing that it is
the best possible chance for her to learn skills to be a more effective social
being in this very complex world we live in....we have had to let go of our vision of what we wanted
Maggie’s year to look like. We need to find
joy in simple pleasures...to look at the pictures of her and be happy for what
she is experiencing. We are happy that
Maggie is away from the complicated social pressures of FB, Twitter, and
Instagram. We are learning to allow
others to teach her what we desperately want her to learn. We are living each day thanking God that we
have resources and friends who lift us up and support us during this very
stressful time. We are working on not getting
hung up on the fact that we should be able to handle this on our own. We are breathing a lot and trying really hard
to work it out in our minds that it is best for all of us to let Maggie go on
this journey without us. Letting her go
is a GIFT to her (and to us)....but not one without regret or sadness. I have always tried, as a mother of special
needs kids, to find that balance of when to include the special needs child (as
a benefit to you and the child) and when it is not a benefit. Bringing them along, is not always the right
thing to do. We have reached that point
with Maggie.....she was not making progress in our home. Bringing her along was not working for her or
us. SO, now....as we move forward to the
next phase...we have to accept the new normal.
BUT, the new normal is not always easy to accept!
Thank you all for the
letters to our baby girl. The letters
are lifting her up and helping her!
BELIEVE me. We leave this
Wednesday evening to fly to Salt Lake so we can spend Thursday from 8:30-5 and
Friday from 8:30 to 5 with her. I can’t
begin to describe the excitement I feel in my heart to see my beautiful
Maggie. Again...if you have something
for me to give to her....let me know.
No comments:
Post a Comment