Friday, October 9, 2015

Almost 4 "It Gets Easier" - A Mothers Experience


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 na├»ve 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?

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 equipment 

click 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!!!



Wednesday, August 12, 2015

Time is Relative & Differences will be Noticed

Time is relative. This year I have figured out just how true that statement is.  It has been nearly four years since Noah was born, Maddy and Ellie just turned one two weeks ago, when the “witching hour” hits around 6:30 pm each night it feels like an eternity until they are all asleep, and yet as I sit here I wonder how the year could have flown by so fast.  I am pretty sure I just pulled out the summer dresses, but as I walked out my front door this morning I felt a little bit of the crispness fall brings to the air.  We are still officially in the beginning of August and when I find seconds to myself I am looking at Halloween costumes or Christmas gift options online.  

It has been ages since my last post and yet I feel like I just wrote one a month ago.  I still call the girls my babies, heck, I still call Noah my baby and yet I can’t find a single outfit in the baby section that will fit any of them. I know time is moving forward because each time I see myself in the mirror I notice my pixie hair cut is no longer cute or short and I think there are at least 100 new grey hairs sprouting now.  Who knows when my last hair cut was but I swear I told my neighbor the other day how I am loving having really short hair.  Not so short these days since I can put it in a ponytail now.  Time has passed and it is all relative.  


Just last week I went through every single photo I have on my phone or uploaded to my saved folders.  I found myself smiling, laughing, getting teary eyed, and then feeling utterly blessed.  My husband and I truly are so incredibly blessed.  Noah has come so far. Since we see him every day I have to remind myself by visually seeing his progress through my constant snap happy photos I take each week.  To think a year ago I sat on a chair exhausted holding two newborns and got to witness Noah pushing up from his tummy onto fully extended arms for the very first time.  One year later Noah refuses to lie down on his back.  The second we lay him down on his bed or the floor he is flipping to his side, pushing up on one arm, assisting with the other arm, getting into a full upright sitting position, and then teeters there for at least 20 minutes before his core gets tired.  In the beginning of this new stage Noah would crash hard and we had to take every safety precaution to ensure he wasn’t smacking his head on his way down.  Helmets were purchased, pillows littered every square inch around him, tables and tiles were padded. Nowadays Noah can catch himself 95% of the time on his way down to ensure a safe fall, major progress!  
These new wonderful milestones came from a lot of hard work on his part, hours upon hours of physical therapy, and one of the best physical therapy teams there is (Rick his actual PT, Mommy & Daddy, and Rikki our PT student who helps us a couple times a week).  We have to make sure to take what we learn with each therapy visit and engrave it into our daily lives and every single activity.  Changing his diaper, bathing, going to bed, waking up in the morning…all come with a bit of therapy involved.  We don’t even realize we are doing it anymore.  Well, that is until I find myself trying to maneuver the girls the same way when I change their diapers or bath them and in return I get a whole other experience.  Let’s just say changing a diaper on a child who does have core strength and flips and crawls and kicks and screams is SOOOOO much harder than incorporating therapy techniques into Noah’s diaper changes.  Speaking of diaper changes though, Noah suddenly learned to just sit up if light pressure is held on his legs.  Talk about an ab workout.  He just sits up “corpse style” as I call it.  Not even using his arms anymore.  So tall, so straight, so stiff, and only the lightest of pressure on his legs provides him with enough support to do this.  GO Noah GO!  Keep working that core. 
Over this past year I have found myself  having pretty much all the classic ups and downs that goes into being a special needs parent, a  new parent of multiples, a full time working mom, a wife, a pet owner, an owner of bills and finances, a home owner, a daughter, a sister, and a friend.  I found that I have pretty much experienced every single situation, thought, fear, happiness, joy, panic, or memory making moment a person can have this year.  Sometimes I say “I survived” this past year.  Sometimes I say “I lived” this past year.  Sometimes I am too tired to even know how to think and just sit there staring at a tv and realize minutes later that I never actually turned it on.  
Through all that I have experienced the two things that stand out the most are how strong my marriage really is and how well we work as a team.  And raising three little souls who are night and day different from one another teaches you more about what life truly means than any book, blog, podcast, tv show, or news article.  
I have learned that everyone around me faces their own trials, hardships, ups and downs.  I have learned that every person deals with these things in their own way.  Some find things more life altering than others and what one would consider an easy battle is a major storm for the next.  I have taken to heart those around me who fill their days with joy and laughter.  I have learned that it isn’t easy, but doable, to brush things off and go feel the wind or rain on your face.  I have learned that I will compare Noah to Ellie and Maddy just like any other person would compare their children, pets, siblings, or coworkers.  It’s natural to notice differences in similar things.  I will always notice when the girls do something that Noah has yet to even attempt.  I also will notice when one of the girls does something before the other.  
I never did baby books for the girls because I didn’t for Noah since nobody has ever made a baby book for the type of milestones he can make.  I also never wanted to have the girls sit and compare who did what first, if what they did do, were only days apart from one another.    It didn’t matter to me who spoke first, walked first, rolled first, or ate first.  What I have learned from watching my three kiddos is that they learn from each other and teach each other without even knowing it.  When Noah was able to push up with arms extended the day I brought the girls home, I knew the girls would be following him shortly.  The day I saw all three push up together as if I had my own mini gym in my front room I was elated.   Noah started doing barrel rolls about the same time the girls did and somehow he learned where all the toys are stored in the living room and will roll that way.  Had to be because he noticed the girls always heading that way.  We never showed him.  
It didn’t take too long for the girls to surpass Noah. I had been reading up on how to prepare myself for the emotional rollercoaster I thought I would have on that day.  I remember it clearly.  It was after work, I was tired, I had about 30 minutes until my husband got home and was trying to stay calm and collected to care for the three until I had him home to help me.  I kept them in our “safe zone.”  Our fully baby proofed living room.  The only room in the house I could sit and breathe without panicking about one or the other getting hurt or hurting each other accidently.  I had my diaper station, my bottle station, my toy area, Noahs helmets, the tv, books, crash pillows, a basket full of burp clothes, the emergency puke bucket and Noahs emergency gtube kit just in case little hands found his button and decided it was a toy while I was changing one of those diapers I previously talked about.  After doing my rounds I found 30 seconds to sit back and actually lean against the back of our couch and remind myself to breathe in and out slowly and pace myself.  The kids were all on the floor and Maddy suddenly flipped onto her stomach and then back onto her back.  Ellie then found a toy, grabbed it, chewed it, and then tossed it to pick up a different toy she thought was better.  That is when it hit me.  Noah couldn’t yet flip back and forth like that.  He was close but not quite there and nowhere near that fast.  And even though Noah could now bring toys to his mouth he never visually tossed one aside to reach and go after another toy.  I sat there watching them thinking to myself “this is the moment!”  “Angie, this is that pivotal moment you knew would be coming.”  “Feel those feelings you know are coming.”  Yet…I didn’t.  I just sat there and watched them thinking “cool…Maddy can now flip and Ellie can now make choices.”  It was simple and fleeting and anticlimactic.  I did notice it but it wasn’t this monster of a moment I thought it would be.  All that time reading and prepping for this big sudden realization and emotional roller coaster that never happened was kind of disappointing. Not because I wanted a big rollercoaster but because I had spent so much time worrying about a moment some people told me would be massive and yet for me personally it wasn’t.  
That was one of the biggest lessons I learned this past year.  There are so many articles and stories about other people’s experiences, triumphs, and trials.  I thought that if I read enough of them I would relate or be more prepared.  I spent so much time during my pregnancy worrying what it would be like to have children after having a special needs child.  I spend so much time feeling guilt for moments that hadn’t even happened yet.  I felt so much sadness thinking about how I might feel on a future date because an article I read said they felt that way and thought I might feel that way too.  Yet I didn’t.  To me there were just so much more to think about when those moments actually did happen for me.  Instead of feeling sadness for Noah not being able to eat a spoonful of mush the first day I fed it to the girls I celebrated that Noah now had two sisters to watch eat mush and hopefully give him something to desire to do one day too.  The day the girls started to crawl I wasn’t sad because Noah couldn’t crawl.  I watched them closely. So close in fact that my camera couldn’t focus on their tiny movements as I took hundreds of pictures to teach myself how a typical child’s muscles worked in the first days of crawling. I learned from their movements and incorporated what I witnessed from them into therapy techniques for Noah.  The best part was that I had two babies to learn from which meant two totally different techniques.  I love the fact that Maddy and Ellie are completely different because it is an everyday reminder that everyone is different even if they happened to be born from the same place seconds apart.  They are just as different from one other as each of them are to Noah. This simple reminder keeps me grounded most days.   It tells me that each person young and old are living their life in their own speed and direction.  Each person has their own interests, sounds, dislikes, and loves. Just as each person has their own trials and triumphs.  I will notice the differences yes, but these differences cannot and should not be compared to each other.   I have figured out that when I see something that is different it does not affect me like I read it would.  This gives me strength because now I can trust that part of myself.  I know for the future that when I do see the girls do something that Noah cannot I will not get all sad and depressed and start comparing and wishing for the shoulda-coulda-woulda’s.  I will notice it and see it but I will smile for the girls and learn from them and then use what I just learned to help Noah.  One day the girls too will be able to help his as well and add to Noah’s therapy team.  
All three of my children have grown so much this past year.  Some things I would like to forget but many more I will keep in my memory bank for a lifetime.  Their three personalities keep us on our toes and we have to be ready for three outcomes to any event or situation that comes our way.  We have to roll with the punches because nothing every goes as one would hope.  We have to keep learning and then relearning and then relearning again with each one of them.  It’s pure craziness and the bags under our eyes and grey in our hair is testament to that.  Sleep is a luxury we have yet to enjoy on a regular basis and laundry is a battle we will never win no matter how much we spend on detergent.  Formula is a thing of the past now and our stock pile of baby food jars is dwindling as well.  Most of the large infant equipment has been washed and given back to their original owners which has opened up what little floor space we did have for bigger and better toddler toys. Having the girls transition into toddlerhood reminds us again that Noah too is a big toddler and likes toddler things as well.  Just because he can’t yet actually play with most of it doesn’t mean he doesn’t like to watch and listen to his sisters play with it.  Another reminder that as Noah grows up so should his food options, toys, tv shows, and activities.  He is no longer a baby even if he can still only physically do baby movements.  Noah is growing up and having two little siblings reminds us that he is ready to take on bigger things in life.  I am not sure we would have realized this if it wasn’t for the girls.  He is ready.  Watching all three of them has made us ready.  
Noah turns four years old in November. He will be riding the school bus to preschool three days a week.  He will be attending therapy 2-4 times a week.  He will soon be having two sisters helping push his wheelchair and cheering him on at therapy, two siblings to flip through books with him and bring him a different toy every minute.  The best part is that we will get to watch all of these moments, snap our pictures, and bank so many new memories.  Just that thought makes me smile.  I love my life.  Exhausted craziness and all!  

Tuesday, February 3, 2015

Spring Swing

When you have an immobile toddler you tend to get creative when trying to find new and exciting ways to entertain them.  Bonus points if you can turn it into some form of therapy exercise, and double bonus points if you can bring a smile or laughter to your little ones face. 

We have discovered a handful of very specific things that will always bring Noah to a roaring laugh. 

#4 when the warm sun shines on his face or cool breeze brushes his skin. 
#3 Swimming pools (aka swim therapy)
#2 when loved ones sing him his favorite songs and tickle his face at the same time. 
                    BUT above anything else in this Universe the
#1 thing that makes Noah happy is JUMPING!!!!! 


Baby Noah all chunky and cute
As a baby this was an easy activity for us to do with Noah.  Other than bouncing him on our knee all we had to do is bring out the floor or door frame baby jumpers. We then had to secure him in with whatever blanket/pillow/or safety device we needed to use to bring him comfort, and our little guy would jump jump jump his little heart out.  The laughter and joy it would bring Noah was unmeasurable. It helped us parents and his caregivers provide an outlet for his energy that would otherwise build up and make him ornery.  We would pack those baby bouncers with us everywhere we went.  Vacations, family and friend homes, daycare's, ect.  He loved it.  Love isn’t even a big enough word to describe how much he LOOOOOOVED it.  It was his ONLY independent activity, his only source of repetitive vestibular movement that didn't break our backs, his only energy absorber when not doing physical therapy, a big scoop of sensory dessert for his body and soul, and I as his mom believe it was/is the #1 exercise that helped build strength and tone in his leg muscles, ankles, hips, and knees.
video
One of four different types of baby jumpers that we have used...and our least favorite as the three straps kept making Noah want to rest his head on the back strap.  You can see his joy in this video though :)

Crash! Thud!
His doctors have repeatedly commented on how strong his bottom half was in comparison to his core and upper body.  I frequently joke with my husband that I am going to invent and upside down bouncer to work on his shoulders, back, and arm muscles.  If only there wasn't that whole blood-rush-to-the-brain issue when being upside down to worry about :) 

One glorious afternoon as Noah was partaking in his daily allotment of jumping we heard a BANG! CRASH! THUD!  The spring broke on Noahs jumper. Thankfully it still had the safety strap so even though his knees fell to the ground he was still swinging securely in the chair. 

We tried fixing it on our own rigging and bending the spring and making due until we were able to get our hands on another jumper.  This whole Bang! Crash! Thud! Soon became routine as Noah got older and much heavier and had now broken a handful of these baby jumpers and was now falling all the way to the ground which was posing a safety risk that we had to prepare for ahead of time with a circle of pillows or door frame padding.  We were way beyond the weight limits for every single baby jumper on the market.  It was a sad day when this momma realized our only option was one that costs hundreds if not thousands of dollars because it was marked with the “Special Needs Equipment” stamp and therefore came with a price tag that was beyond our means.

Dang broken springs!
Determined, I began my own search trying to figure out a way to bring my Noah his favorite past time again.  I visited hardware and parts stores, researched spring companies and medical companies.  I called gyms and manufacturers of baby equipment.  Nothing seemed to pan out and I was really heart broken.  This was a dark time for my Supermomminess energy levels.  I felt defeated.  I would go home and stare at the latest broken jumper and examine its parts trying to envision a possible solution. I was also trying to entertain a bored boy laying on the ground staring up at the ceiling probably bothered that I wasn't hooking up his jumper and letting him play.  It was horribly sad….then a MIRACLE happened! 

I was casually perusing a daily deal website and clicked on some category titled outdoor playground equipment.  Among the many slides, swings, and blow up bounce houses listed was a device called the Spring Swing.  Basically a roped disk swing with a kick-ass super spring system designed by a company in Mississippi.  Spring Swings has designed not only their SpringSwing but also Ziplines and other “backyard recreational tidbits.”  I found myself going frantic clicking on every link on their website and trying to figure out a tactful way of reaching out to this company and praying they would actually return my email and many questions I had about their swing. 

You see, I didn’t actually want to purchase their swing to use on its own but rather buy one to tear apart and adapt to Noah’s jumper.  I didn’t have the heart to say “Hey, you don’t know me from Adam but can I have your secret to adapting a spring that will hold my fast growing heavy son.  Then I would like to take your idea and put it on another company’s baby jumper and then put it up in my own house for my son to use.”   Who would go for that!?!  I thought for sure I either wasn’t going to get a response or I was going to get some legal mumbo jumbo thrown my direction or a big scolding for trying to mash up two different company devices and use on my special needs son.  I was waiting for the wrath…or let down. 

To my surprise I got a really fast response.  Not just a response but a kind email from the company wanting to actually go out of their way to help me make this happen for my son.  I couldn’t comprehend what I was reading.  Someone who has no clue who we are wants to take their time and resources and actually help me put together my crazy device.  Furthermore they didn’t just want to help me…they wanted me to ship them my broken jumper and they were going to do it for me.  I cried.  Tears of joy and tears of humbled happiness. 

contemplating his new bouncer
I few weeks later, a couple days before Christmas the package arrived on my doorstep.  They had adapted Noahs baby jumper with their spring system. They went the extra mile making sure it was secured using bigger better bolts and other tidbits to help Noah stay secure and safe. It is a bit louder than one would like but that is the smallest price to pay for Noahs happiness and honestly he or the girls seem to mind it.  The best part is that they did this out of the kindness of their hearts and never once even asked anything from us at all other than a follow up picture to let them know how it worked.  It just goes to show you that there truly are angels in this world who can put smiles back on the faces of total strangers. 
video

This video was taken the very first time I put Noah in it.  He was not sure what to totally think of it yet as it sounded different than he was use to and we put an eye hook into a beam in our living room so he was jumping in a brand new area and taking in all the Christmas lights we had strung up for his vision therapy earlier that week.  You can see how happy he is from this video.  We have since put in other eye hooks into beams in other areas of our home so now Noah can be right next to us jumping in any main room we are in rather than door frames.

I just want to personally thank Jason and Frank and everyone at Spring Swings for helping Noah, who is once again jumping, laughing, and smiling with his momma following suit.  We could have never done this without you and your compassion.  We feel truly blessed. 

Spring Swings
http://www.springswings.com/