Sunday, May 26, 2013

Rockin' that Evaluation!

Feeling pretty pleased with himself following his eval.
On Tuesday, Aaron had an evaluation for preschool, to see if he qualifies, you know.   Really more to get an idea of how much he needs in the way of services, 'cause if you're only about six months old or so developmentally, and you're nearly three years chronologically , yeah, you can call that delayed development.

Most of it really was a "can he do this" or "has he done that" kind of a thing.  But then when the speech/language specialist came in, things got interesting.  She asked if he could recognize objects on a page.  Um,  I don't know, I don't think so.   Well, let's see.

She gets out a book with three to four color pictures on a page and shows it to him.  "Where's the bird?"  Just as I get ready to say, "I don't think he knows what a bird is," (he's rarely outside other than being moved in and out of a car),  HE LOOKS AT THE BIRD!!  RIGHT AT IT!!!

Then she asks him to find the ball on the same page.  Found it!  And on and on we go.

Finally, after eight to ten images, and getting every single one, she shows him a page of a child playing with blocks, bathing, and sleeping.  She asked him to find the child washing.  He kind of looked at all of the pictures but not really focused in on any of them.  I told her that most of his baths are bed baths, so it's probably not something he recognizes.  Then she asked him to find the sleeping child.  Again, he really didn't engage.  So I asked him to find who was "night-night."  Bingo!  Right at the baby sleeping.

This kid can learn, and does learn!  We just need to find the key to unlock the safe.

In other news, he also had labs done on Friday.   We've been adjusting his PEEP settings on his ventilator and needed to check that it was going well.  He's been on a PEEP of 10 (crazy high) for two and a half years.  We dropped it to 9, and then two weeks ago to 8.  Before going further, we needed to know that he was still getting the support he needs to ventilate well.  Yep, so tomorrow, we'll try 7 and see how that goes.  It may not sound like a big deal, but believe me, it's huge.  IF he can keep this up, we've got a real fighting chance of being able to get off the vent.  It won't happen today or tomorrow, or even next month.  But that's okay.  I'm in this for the long haul.  It's a marathon we're running here, not a sprint.

So all in all, a pretty good week for Mr. Aaron.  And the month of May is winding down, which means perhaps I'll catch my breath.  School is almost out, the sun is shining, and life is good.

“The central struggle of parenthood is to let our hopes for our children outweigh our fears.” 
~ Ellen Goodman

Sunday, May 19, 2013

You Know You're a Special Needs Mom When...

Back when Aaron was still tiny, and I was still frantically trying to keep him from dying, a mom posted something that made me relax.  She said, "you know you're a special needs mom when you put the stuffed animals to work."  She was using the stuffed animals to hold the blow-by oxygen that her daughter needed. That's when I realized that this could be doable, livable, and even fun.  

Recently, another friend posted a "you know you're a special needs mom when..." and asked us to respond.  I laughed and laughed.  Mostly because I recognized myself in so many of these!  I hope you enjoy them, too.  But please, if you don't have a special needs child, don't feel sorry for us.  This journey, while none of us planned on it, has proved to be a refining and growing process that could not happen any other way.  So here goes:

You know you're a special needs mom when:

  • You have more "dates" with medical people every month than with your spouse.
  • When playing is considered therapy.
  • When the UPS guy knows you because of all your deliveries from home health.
  • When walking to the mailbox is your daily break.
  • When the term "roller coaster" has a whole new and much less pleasant meaning.
  • When the stack of books on your nightstand consists of mostly language, physical therapy, sensory integration, health, therapy, and nutrition books, . . .  and nothing fun to read.
  • When you have to pack like you are going on a three day trip, but you're only going to a doctor's appointment.
  • When you take a suitcase with you to any unplanned doctor's appointment, because you might not be going home afterwards.
  • When you turn the word "fart" into the Fetal Art Retention Therapy.
  • When you are suddenly a doctor without all of the schooling (and you know more than the real doctors do about your child).
  • When you don't even think twice about checking consistency, smell, and amount of poop each day.  And shout praises when it happens!
  • When you start thinking about how every activity could be turned into a physical therapy, occupational therapy or otherwise activity.  Even if it is something as simple as walking from one room to another.
  • When your spouse, parent, neighbor asks you to please speak English, and you didn't even realize you were using terms not often heard outside of the hospital (q 6 hours, NPO, CPT, etc).
  • When you have to make a group in your contacts on your phone titled "doctors" and it's the one accessed the most.
  • When you have doctor's home and cell numbers, and they are higher on the speed dial than your family.
  • When you know the tricks to accessing a doctor, a real live doctor, on the phone instead of having to leave a message with a machine or a nurse.
  • When you half jokingly tease your pediatrician about paying for his new car.
  • When you know your pediatrician's home, cell and pager number by heart, or he actually does house calls because it's easier than making you leave with all the equipment.
  • When you start turning medical equipment into furniture and decor in your home, or when all the walls and baseboards in your house have milk splatters from feeding tube mishaps.
  • You are in dozens of different groups on Facebook, and you can ask them more questions than your doctors could ever answer, and those groups cover every organ system in the human body.
  • When you have to explain something medical to a doctor.
  •  When the nurses in the ER know your preferred drink choice and meet you at the door with it.
  • When you know exactly how serious your kiddo is based on which wing of the local hospital's ER they put you in, and you know you are in the "child abuse room" because the only time you get that room is when he has a "normal kid" injury.  Well, that and there is a camera in the ceiling of that room.  
  • When your little girl feeds dolls with syringes, when they can be used in the bathtub or to make really fun pancakes!
  • When the ER nurse or tech is taking you to a room upstairs and you can help them out by saying which pod you are on.
  • When your autistic son is convinced he can ace Spanish in 8th grade from listening to eight years of 24/7 Dora the Explorer.
  • When your doctor asks you what they should do next.
  • When your doctor tells you to call him by his first name.
  • When the nurses ask you how to mix your kiddos medications because they don't do it enough to remember.
  • When the ER staff asks what hospital you're a nurse at. 
  •  When your two-year-old knows how to say words like, "oxygen," "cannula," "concentrator," "g-tube," "medicine," and knows exactly what all of them do.
  • When the paramedic tells you that he relaxes when he sees he's rolling up to your home, 'cause he knows all he has to do is what you tell him to do.  And before you can answer the cop, he says, "yes, she's riding in the ambulance, in the back!"     
  • When the paramedics not only know your house, but they know the neighbors who come over when the fire truck comes.
  • Or when the paramedics come and ask "Which one this time?"  (This from a mom with multiple special needs children.  I think that makes her a super-special needs mom.)     
  • When the pharmacy is on speed dial.
  • When you think you have it made when the pharmacist moves into your ward! (a small Mormon congregation)  "Awesome, that's a non narc . . . wanna just bring it home and drop it off?"
  • When you are seriously jealous that someone had their pharmacist move into their ward.
  •  My pharmacist comes to my house just to make sure I get the messages he leaves me.
  • When people say, "I don't know how you do it," and you can look at them and think (you are such an idiot, like I got a choice in this?) and still say nice things like, "some days it is hard but we make it through."
  • When you hear beeping in the grocery store and without thinking, you check your kid's pump.  Or you hear beeping that's not really there days after you have left the hospital.
  • Someone on Facebook asks how to clean pukey carpet or unconstipate a child and you realize this is your new expertise in life after writing them a short "how-to" instructional manual.
  • When the "code blue" tones sound in the hospital, and you know before anyone speaks exactly what it is.  And then you sit there praying for the child and the family, knowing you probably won't know the final outcome, but also knowing that every prayer helps.
  • You pick the stores to shop at by how likely they are to have sick people in them.  You have a genetics doctor in your Facebook friends list.
  • The lady at the medical billing office recognizes your voice and you're on a first name basis.
  • You have fed formula to a bed at 30 mls per hour.
  • If you have ever modified or made do-it-yourself medical equipment because your design is better.
  •  They don't have to weigh your kiddo because it's been less than 48 hours, and you've already responded in kilograms.
  •  If you could secretly run an Instacare using only the meds and equipment in your front room.
  • If you've ever embarrassed your teen because you can run that Instacare, and threaten to when he gets really sick himself.
  • Your kids don't play house, they play doctor, and they know the signs or use jargon correctly.
  • The ER is no longer a big deal.  In fact, you bring snacks or chat with other parents about how to "work they system."  Or you skip the ER all together because you already know what they will say and how to treat it at home.
  • When you show up at the ER, they start admission procedure before you even check in, because they know if you're there, you've exhausted everything you can do at home, which is also almost everything they can do outside the PICU.    
  • You laugh hysterically when J.D. on Scrubs can't place an ng tube because you can do it practically in your sleep.  You are so glad you don't go to Seattle Grace Hospital because those fools treat everything with surgery.  And you wish "House" was your real doctor so you could eliminate all 12 of your specialists.
  • When you are the person staring at the special needs kid in the grocery store . . . not because of the kid but because you are trying to figure out what that cool piece of equipment that they have is, and how you can get one, too!
  • When your favorite doc retires and you consider showing up on their doorstep with flowers and chocolates and begging them to come back to you. You promise them you dont take them for granted and will change your headstrong ways. Pleeeeeaaase...I can't survive without you Dr -----
  • When your child asks for a REAL stethoscope for Christmas. Not just that toy one.
  • When you get invited to your doctor's family parties.
  • When you are sitting next to someone with a baby and and YOU are the one saying, "Did you see what she just did???  That is incredible!!"
  • When you have your insurance ID number memorized
  • When you get new cabinets put in your laundry room "not for storage" but for all your son's supplies.
  • When you rearrange a room not for a change of pace but to fit the newest medical equipment into a tiny space.  And you do it knowing you'll probably be doing it again next month.
  • When you've just had a 30 minute conversation with the ordering person at Apria AFTER you placed your order because she is the only one that ever gets it right and seems to understand, so she seems like a friend.
  • When every night, when you tuck your child in, you sincerely thank Heaven for allowing you to mother this child for one more day.  You know the time will come when it will be over, and you don't want to miss a minute of this wonderful, painful, challenging, inspiring journey.  Because you know, better than almost anyone, how life can change in a moment, an instant, and how none of us are guaranteed a tomorrow.   
 Special thanks to all my mommy friends on Utah Kids.  When this went up a few weeks ago, I laughed until I cried, and then sometimes I cried, too.  You ladies give me so much strength.  I know I'm missing a few in here, please forgive me.  My computer was being funny as I tried to copy and paste, but I think you get the gist of this.  We're not given special kids because we're special.  We're just ordinary women being asked to parent extraordinary children.

--> “You’ve developed the strength of a draft horse 
while holding onto the delicacy of a daffodil … 
you are the mother, advocate and protector 
of a child with a disability.” 
~ Lori Borgman