What I have learned now that I have four years to look back
and evaluate how I got to today.
Were once I was the student I find myself now the slightly-more-seasoned-teacher. I learned what works and what is a waste of
time with all things big and small. I do
get calloused at some things and cynical with other things, but I have now
built a better understanding and emotional relation to other aspects of
life. I learned who really has my back
and who I can count on. And I learned how to build relationships by opening up
communications with those who were timid or afraid to be a part of my special
needs world. I have learned how strong I
can be and how much stronger I can get with each hurdle. I soon realized there is no limit to the
strength I can build. I learned what is
important in life, what aspects are superficial, and what now makes me truly happy.
I learned that being content is the same as being happy, just not as flashy. I find
myself having an inside chuckle when hearing certain phrases or getting
incredibly offended or sad hearing others.
I have found myself having more manic days out of adrenaline rushes or utter
exhaustion. I have found my new “me.” It is different, more mature in some ways and
yet more emotional in others, but it is still good. Choices become clearer and easier because I do
not have time to waver on anything and have to make big bold choices and
actions immediately. After so many of
these choices being thrown at me I have found my ability to tackle them much
faster. The emotion attached to these
will still be the same. But the choice on what to do comes faster because I
have now learned that I have little control over the outcome to most choices I
have been forced to make.
After four years I have gained a whole new understanding of my
growing boy. I have been able to figure
out what certain movements or sounds mean.
And if I can’t, I make up my own meaning to them to bring another moment
of happiness to my day. Noah’s eyebrows
move much like mine. All over the place
and with each and every thought my eyebrows express themselves. When Noah likes something or I think he might
be concentrating, his eyebrows go up in unison.
When he is familiar with a song or voice his eyebrows go up in
unison. To me, upward eyebrows mean
happiness, familiarity, positive thoughts, and smiles. Locking knees on the other hand can mean the
complete opposite. When Noah feels
overwhelmed or loud sounds are starting to get under his skin he will lock his
knees and stiffen out his legs. His
entire body becomes rigid and he starts to move in awkward little jerks and
twists. At one time I thought these were
random acts of neurological misfires. Then I thought that he was seeking
stimulation or movement. After four
years I have finally learned that when Noah does this he needs his space. His quiet dark time alone to center himself
and calm his over-stimulated nerves.
Noah will now suck his tongue as if imitating sucking on a pacifier and
this means he is thirsty. He does this
every single morning and once I realized his night meds cause cotton mouth it
finally clicked. When he wants a drink
he sucks his tongue, when he is really intensely hungry he will shove his three
fingers in his mouth and suck on them.
When Noah is tired he will immediately start to fuss and the smallest of
sounds can set him off into a full blown cry-fest. The second we see Noah’s tired eyes means we
have exactly five minutes to get him into his own space to ensure a calm and
peaceful night.
Noah’s laughter is joyous and full of light and peace and I
am pretty sure it is what snowflakes are made of. Noah has laugh attacks that come out of
nowhere and can last 30 minutes. As an
infant he would have them before he fell asleep. Now that he is four he will have them on the
school bus, or riding in a car, or sitting in his wheelchair riding on
pavement. He will also just be sitting
in the middle of the room playing with the same toy he has held for the past
hour and all of the sudden break out into boisterous laughter. I cherish these moments and try to make sure
that every instance is safely stored into my Noah laughter memory box.
I have learned that I can plan, pack, and prepare for days
before any single event, holiday, or simple family outing. But in truth, I have
no control over what might happen and soon realize the time I spent preparing
were wasted minutes I could have focused elsewhere. This isn’t a special needs lesson. This is a parenthood lesson. I didn’t know this until I had the twins.
In fact, since Noah was our first I didn’t know much of
anything regarding the differences between being a parent of a special needs
child versus a neuro-typical child. Now
that I have two typical children I realize that most of those first year
worries, tears, and hard moments were actually first-time parent moments and
not just because we were caring for and raising a special needs child. Every single parent in the entire world has
these moments. Every single one of them! That thought made me feel not so alone or
lost like I felt in the beginning. Actually,
now that I have built such a big support system of other mothers raising both
typical and special needs children I never feel alone. I have friends all over the world with a
wealth of knowledge and advice that a price tag couldn’t be put on.
With that being said I still have my dark moments. Usually when I am shopping by myself during
my lunch hour or riding in my car alone to pick up the kids from daycare. It is always when I am alone and I have time
to overthink things, dwell on the past that can’t be changed, or stress over
future events that haven’t even happened yet.
I am always living in the moment and that is my happy place I have
figured out. When I let my mind float to
past or future stresses is when I tread into emotional roller-coaster territory. I
have targeted my weak area and I have found solutions to overcome it as
well. It took me awhile and much self-examination
but once I accepted it, I learned from it, and I grew from it.
I learned that I have to say “yes” much more often. When help is offered, meals are offered, an
invite to lunch or even a quick walk around the office with a coworker to chat. I am not naïve enough to think I can do this
on my own. I have the best husband I
could ever have hoped for. I have amazing parents and in laws and family and
friends. Life is so much easier to walk
through with a helping hand. I do not
pretend to be supermom. My house is in
one constant state of chaos or havoc. Some weekends the only tasks that get
accomplished are some games of chase, some giggles, and a million new
messes.
Life is short, it’s hard, it’s equal parts sad and happy,
and every minute of every day is a new opportunity to make a new memory with
those standing next to you. Life as a
special needs parent means each new obstacle of the same type gets easier, but the
first time is always the hardest to face - - isn’t
that just the way life is for everyone?
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Neuroworx Pediatric Therapy Clinic
(Noah's Ark Rainy Day Fund-Named after our Noah)
If you would like to help fill it up with much needed equipmentclick here
Neuroworx is the amazing therapy clinic that Noah goes to and works really hard to build strength and muscle. They are a non-profit organization and rely heavily on donations to expand (all tax deductible). This year they were able to open their new facility and create their first ever pediatric department. It is a beautiful room waiting for much needed therapy equipment for all those children who want to learn how to walk. As you can see from the picture of Noah above the space is empty. If you would like to help contribute to this space please click on the link above. You may request that all donations be directed specifically to the pediatric department or you could choose to donate to the Noah's Ark Rainy Day Fund which helps children that cannot afford to pay for therapy get the services they so desperately need. This fund was created specifically for children and named after Noah himself.
***children are currently using the adult equipment but it would be wonderful to provide them with their own and allow more children time slots on these machines. Currently, children time slots are only available 2 days a week but with your help these kids could get their own machines. go full-time, and open up the pediatric clinic 5 days a week.
Let's get these kids walking!!!
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