We're back! Finally! We took a little break over the holidays but hopefully our posts will get a little more regular now. Here is our first post of the year. Hope you guys enjoy.
1. We like getting invites. Parties,
get-together's, baby showers, cook-outs. But, unfortunately more times than not
the answer will be "No." from us. PLEASE
do not stop inviting us. This life is very isolating as it is and those
invitations and phone calls are sometimes the only things that keep us connected to the
friends and family that we love but often can't see because of a plethora of
reasons on any given day. We realize that friends and even family members have
been put on the back burner and that
hurts everyone involved but know that we miss you and we won't be in this stage
of life forever.
2. We are as new to
this as any of you are. We had limited contacted with the special needs
community before our son came along and we are still learning as we go. I'm
pretty sure we will never stop learning. Therapies, techniques, tools and schedules are
ever evolving for us so we will always have something to talk about when it
comes to his care. We want to involve you if you would like. We would love to
teach you simple sign language and calming techniques. Just ask and that
brings me to my next point.
3. Never be afraid to
ask us questions. If something we say confuses you, you don't understand an
abbreviation, you're concerned about how he's progressing , you want to know more
about how we communicate….ask us. We are not people who get
offended easily. Unless, you are blatantly mean, we will be more than happy to
answer your questions. If you are
blatantly mean, I will be more than happy to put you in your place J
4. Yes. We are still
firm in our faith. We believe that we
need Jesus. Facing challenges in life does not and should not draw us away
from Him, rather it shows us how much we
need Him in His entirety every single day. We went through a short phase of the
"why's? what if's? how comes? and why me's" but I believe that is the
process that everyone goes through when there is unexpected change in their own
lives and those around them. We found that our answers were "Because I have a plan. Nothing else
matters now. Because I have a plan and last but not least, Because I
have a plan." We don't know what God's plan is for our lives or
our sons life but we know that whatever it is, He will use it to His glory.
5. Raising a special
needs child is not a bad thing. Have
your heard me say the word "different" or "challenging"
enough yet? Well, it's true. We face different
challenges and have different
schedules and we eat different foods.
Different is not less. Different is not worse. Different is great. Our son is
great and we are happy with our life. Do not feel sorry for us.
6. No. We are not
overreacting about his food restrictions. Food allergies are not "all in your head" . He will not be
okay with "just one chocolate chip
cookie" and Yes, his reactions are that bad. Also, no he is not
allergic to some of the things we restrict such as sugar, food dyes, soy and
beef but they have a drastic effect either on his Asthma or his behavior. Also,
he is okay with not knowing what cheese tastes like or a pecan pie or a regular
birthday cake. With his sensory issues, he probably wouldn't eat those things
even if he could.
7. Being in public is
our personal hell. Not because we
are worried about others so much but about how overwhelming it will be for Big.
I do not care if people stare at us while we do what we have to do to get
through a grocery trip. Again as long as you keep your mean or hurtful thoughts
to yourself, we are good. I'm going to let you in on something that I'm unsure
a lot of you know. When you have sensory issues like our Big does, you hear
everything, see everything, smell and taste e-v-e-r-y-t-h-i-n-g. There is no blocking out background noise or
ignoring that scratchy spot on the inside of your shirt. Bright lights are
brighter and more distracting. Could you
hold it together with that much bearing down on you? Imagine all of that in addition to being a small child who
has difficulty processing speech and has delayed emotional coping skills and
you are in for one hell of a trip to grab some toilet paper or if you would
like to go out and eat something that isn't homemade.
8. We are no more
special than the parent next to us. Every parent struggles. This,
Parenting, is the hardest thing you will ever do in life. Raising a child to be
a healthy, happy adult who does good in the world is our goal as I like to
believe it is for most. There are a lot of things that go into not making your
kid an a-hole and all of those things weigh on all of us every day. We have
coping mechanisms just like every other parent.
My husband has online gaming. It
gives him some of the social aspect of life that we miss out on a lot of the time and he
gets to stab things. Win-Win. I on the
other hand am a compulsive planner and organizer. There are few things in our
life that I feel like I have full control over so I sketch new ideas for the
backyard, set up a spread sheet for garden planting for the next year or build
a compost bin, and I make to-do lists. For me, looking forward makes the challenges
of the day seem smaller and they weigh less on me. I can't keep looking forward
if I'm too obsessed about the past.
We hope this gave
a little bit of insight into us. We also hope it has opened a door for further
communication, not just for our family and friends but for anyone who may
happen to read this.
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