Communication

Jackson and I did not have a good weekend.  I think we are getting a little sick of each other.  This happens from time to time if we don’t have some kind of break from one another.  Usually I teach one day a week and that is a sufficient break for us, but I haven’t taught in a couple of weeks and Kevin has been working weekends too so there has been a lot of Jackson and me time.  Don’t get me wrong here, I love Jackson so much it hurts, but every relationship needs a little time out here and there! 

Having a special needs child means there are things that are part of your everyday life that are sometimes hard to handle.  For me, those things are: seizures, lack of mobility for Jackson (the kid weighs 30 pounds and gets very heavy after a while), and communication (or lack of it).  I think the biggest issue for me right now is the lack of communication.  He will be 3 next month and although he is delayed he does do some things right on time.  Mostly the milestones you can do without, like teething, and tantrums. 

When your child is throwing a tantrum you usually know why.  There has been some kind of want, desire, or need expressed.  Said want, desire or need has been denied or not acquired.  The result is a tornado of wild emotions ranging from the noodle limp body, the kicking-screaming-throwing-thyself-on-the-floor-I’m making the biggest scene possible, or the longest lasting blood curling scream fest in the world.  Jackson prefers the scream fest.  At which point his mother would prefer turning back time and seriously questioning the decision to have children.  Anyway, my point is that I don’t always know why the scream fest is taking place.  He can’t tell me and since I didn’t get my Bachelor’s degree in Mind Reading, I’m screwed.  It’s a guessing game and that isn’t a game I’m in love with.  But I play it, and mostly I lose.  Which brings me back to our bad weekend.  Both Saturday and Sunday afternoon around 2-3 p.m., for a reason unknown to me, the scream fest was in session.  Initially I try to calm Jackson down.  Doesn’t work.  I move on to distracting him with something he likes.  Doesn’t work.  I feed him, which is his favorite thing in the world.  He calms down enough to eat, and once the last piece of food is consumed, he reactivates the scream fest.  At this point I’ve lost my patience and am close to losing my mind.  I’ve had enough.  I use my stern mommy voice and tell him he to knock it off.  Doesn’t work.  So off to his bed he goes.  Which only makes him more angry.  I go through the house turning off the baby monitors because at this point the neighbors three houses down can hear him and I don’t need a stinking monitor to tell me my kid is making noise.  I let him scream it out for a while, praying he will scream himself to sleep.  Sometimes that actually works, but it didn’t this weekend.  Instead what happened was this – Kevin came home.  He got Jackson, played with him (the exact same thing I did earlier), laid on the floor with him (the exact same thing I did earlier), and within a few minutes Jackson was laughing and happy.  Seriously?!  A few minutes later Kevin puts him down for a nap (which he wouldn’t take all day) and he goes right to sleep.  Seriously?!  Daddy saves the day.  Now I am happy he got Jackson calmed down, but also a little resentful that I had to suffer through the scream fest and tantrum.  The real issue to me is what was going on and how am I supposed to know?  Jackson is still too delayed to comprehend sign language and he can’t point.  He really has no way of communicating.  For the most part I know what he is yelling or crying about and can resolve the issue.  This weekend I was at a loss.  I really had no idea what was going on with him.  It’s frustrating.  Unfortunately, it is just my life right now.  There isn’t anything we can do to change it.  I know eventually Jackson will learn a way to communicate but for now we are forced to play the guessing game.  But guess what?  I don’t want to play anymore.   

Drasus Berniukas (Brave Boy)

I was dreading our trip to Seattle, big time.  3 days in a hospital with a 2 year old is not my idea of a good time.  Jackson is a routine lover and doesn’t particularly like new places or situations.  He lets you know that by yelling/screaming/crying.  So at the thought of our Seattle trip, I envisioned something around the lines of sticking needles into my eyes, swallowing fire and walking on hot coals.  But the kid is full of surprises and he got me again.  I couldn’t have asked for anything better. 

Jackson was awesome!  He took it all in stride and barely ever complained.  He didn’t care for the lady who put all the wires on his head for the EEG, nor the lady who put in his IV (although he barely cried at all when she put it in), and our hospital room was so bright it was difficult to take a nap on Tuesday.  Other than those stumbling blocks he was his typical, happy self.  He acted as if he didn’t have 20 some wires attached to his head.  He ate, rolled around, watched movies, and charmed the staff.  It helped that Seattle Children’s Hospital was duly prepared.  The video camera in our room (which had to be on Jackson at all times) was easily moveable, they gave us a nice big mat for Jackson to roll around on, and they had a nice high chair for him.  I was immensely impressed by the hospital, it is an amazing place.  My only complaint was the food for Jackson.  It was awful.  I’m not a health nut but I do like to feed Jackson good, healthy food (except on Thursday’s after pool therapy when he gets his weekly McDonald’s cheeseburger and chocolate shake).  The soggy chicken nuggets and fries served to Jackson the first day just didn’t cut it.  Luckily I had brought some of his favorite snacks from home and food deliveries from our friends helped (thanks Inger and Karla!). 

The worst of our trip was saved for the last day – the PET Scan and MRI.  Jackson had to be put under for those tests and the two hours between putting the IV in his hand and the anesthesiologist arriving was too long.  It was quite a task to keep the IV tube out of his mouth for two hours.  Plus the poor kid couldn’t eat and was starving.  But again, he handled it pretty well.  I can’t say the same for me, I was frustrated at the long wait and I was nervous about them putting him under and taking him away.  As they were finishing putting him under, Kevin and I were out in the hallway waiting to be taken to the recovery area.  I was trying not to cry and kept wondering how I ended up here.  I just wanted a baby and the next thing I know I am in Seattle Children’s Hospital, with that baby I so wanted being put under anesthesia for the 3^rd time in his short life.  I sometimes can’t fathom the journey I am on because of Jackson.  I also sometimes can’t fathom not being on this journey.  Either way, I am on a journey that my beautiful little boy has sent me on. 

After the tests and final appointments we were finally discharged and headed home.  In a moment of truly perfect timing, as we drove out of the parking garage and away from the hospital, Jackson began laughing.  Obviously he shared our enthusiasm for having this experience over with. 

Now we just have to play the waiting game.  The team of doctors and specialists will meet either this Monday or next Monday to discuss the results of the tests and to determine if there is any kind of surgical procedure that may stop the seizures.  They will send the results to our neurologist here in Spokane and then we will meet with him.  It’s going to be a test of my patience waiting for the call from our neurologist!

On a final note, thanks to everyone for all the support you have shown us on our Seattle excursion.  I can’t tell you how much it has meant to me!

West Bound

Sunday evening we head to Seattle for Jackson’s 3 day hospital stay.  It will be a long 3 days.  We check in on Monday at 10:00 a.m.  We have an hour and a half appointment with a neuropsychologist who will do a behavioral assessment on Jackson.  Then we head to our hospital room where they will attach all the wires to Jackson’s head for the long term EEG.  Jackson won’t be able to move around much or leave the room until Wednesday morning.  It’s going to be interesting trying to keep him entertained for a day and a half in a hospital room!  Jackson is a kid who likes to go.  Wednesday morning at 8:00 a.m. they will come get him to put him under anesthesia for the PET scan and a MRI.  That afternoon we have an appointment with the neurology clinic and an occupational therapist.  If all goes well we should be done around 3 p.m. so we can start the 5 hour drive home.  Whew! 

I am filled with emotion about this visit.  I am exhausted already just thinking about it.  I am excited that it is almost finally here.  I am anxious to get the results.  And I am scared that maybe we still won’t have any idea what is happening in Jackson’s mysterious brain.  I am willing to go through anything to get more information about his brain, but I am having trouble having any hope at this point.  It seems the last few appointments with doctors I have had some hope and every time I leave in tears, with my hope shot down.  I just want some answers and clarity.  I want to know why the seizures are coming from the normal side of his brain.  I don’t know why this has to be such a mystery.  I want these fancy, specialized doctors to figure out why and to tell us what we can do to stop them. 

Today Jackson had 10 seizures (the ones I saw anyway).  Most of them were strong and lasted about 10 seconds.  10 seconds may seem like nothing but it is a long time to watch your child seize.  He was aggravated after a few of them which means they were intense for him.  I hate them.  Stupid, stupid, stupid, f—ing seizures GO AWAY!  Live my kid alone. 

Please let us get some answers from these tests.  Please.

Happy at Roosevelt

On Friday, Kevin, Jackson and I went to Roosevelt Elementary School to meet his new teacher, therapists and classroom.  I had mixed feelings about this day.  I was anxious to see the school and classroom, I was worried it wasn’t going to go well, and I was dreading having to negotiate with Spokane Public Schools about getting Jackson the services he needs.  The meeting went better than I could have ever imagined.

The thing about the Spokane Guild School is that you feel so safe there.  You enter that school with your little baby, while usually in a state of shock about finding out you have a special needs baby, and they make you feel like things are going to be okay.  You get to know your child’s therapists on a professional and personal level.  You actually end up looking forward to therapy because it is such a great place to go.  You see other parents and children there and you know they are going through the same kind of things as you are.  You don’t feel alone.  You begin to wonder how you will ever get through life without going to the Guild School a couple of days a week.  Then before you know it, your baby is almost 3 years old and you have to leave the school.  You feel like you are being kicked to the curb and you are devastated.  I’m not exaggerating here, the idea of leaving the place is totally devastating.  It is like you have been drifting in the ocean in a blow up raft that is slowly leaking air.  When your baby turns 3 that raft will be totally deflated and you don’t know whether you will be able to swim.  I really love that school and it has become a huge part of my life.  Leaving is going to be very difficult.  But as a told the school director a few months back, I will be back someday as an employee.  I have a degree in Parenting Education and I plan to spend my life helping and supporting the parents of the Guild School.  Jackson has given me yet another purpose in my life.

The idea of Jackson leaving the Guild School and going to a real elementary school, with a real classroom and teacher, and other little kids with disabilities is overwhelming.  I’ve spent the last year reading, studying and taking notes on laws, policies, and procedures in special education.  I’ve been preparing to fight for Jackson’s right to special services and care.  I was ready on Friday.  I had my notebook, notes, list of what I wanted for Jackson, and my friendly, polite but firm attitude ready.  I didn’t need any of it.  The meeting went beautifully.  All the therapists were there to evaluate Jackson and they handled him and played with him beautifully.  We answered about a 2,000 questions from all the therapists, the school nurse, our caseworker and Jackson’s teacher Matt.  I am excited for Jackson to have a male teacher and he is young too so he seemed full of ideas.  They seemed genuinely interested in Jackson and how to best help him succeed in the classroom.  I felt like this wasn’t going to be the struggle I had feared.  They recognized his delays, the need for speech, occupational and physical therapy to continue, and the importance of challenging him.

There are currently 5 other kiddos in the class so Jackson will be the 6^th student.  He will go to school Monday through Thursday for 2.5 hours a day.  He will start school on April 25, 2011.  Jackson is going to be the only non-mobile one so he will have an aide assisting him.  3 of the kids are non-verbal so they do a lot of communication work in the class which will be fantastic for Jackson.  I also think it will be important that the other kids are mobile.  That may motivate Jackson to get more mobile, which would be amazing.  In the next few weeks we will go back to the school to see the classroom in action.  We will also be meeting again with everyone to finalize Jackson’s IEP and service plan.  I feel hopeful that it is going to be alright.  So hopeful that I actually went and bought Jackson his first backpack for school this weekend.  It is a little monkey backpack.  It’s so little and cute, just like the boy who will wear it. 

Grief

The other day I read a story on CNN about a 16 year old boy (Wes Leonard) who after scoring the winning shot for his high school basketball team collapsed and died from an enlarged heart.  As a parent, losing your child has to be the worst thing that can happen to you in life.  One all parents hope they never experience.  This story struck me because of the boy.  All all-star athlete, popular, a hero to his teammates, a friend to many, a beloved son whose mom was a teacher at the school who canceled the school play that night to watch her son play.  He was the all American kid, the kid many of us would dream of having.  The kind of kid I hoped Jackson may someday be.  With a promising life ahead of him, he was gone and his hopeful, proud parents left grieving.  I too have been left grieving the loss of my son.

I have grieved for the little boy who by this time in his life I envisioned wearing a tiny little tool belt, that matched Daddy’s big tool belt, while they “built stuff”.  The little boy I would take to the park to play on the playground all afternoon and then go get ice cream with.  The little boy who by now would have his first harness and climbing shoes and would be rock climbing with Mommy and Daddy on the weekends.  The Jackson I thought I was going to get doesn’t exist and I really do grieve that.  Then I read about Wes Leonard and I feel awful for comparing my loss to his.  How dare I grieve for a child that is in my arms, alive and loving.  It doesn’t seem right.  I still have Jackson.  I get to hug and kiss and tickle him all day.  Regardless of rationale, I still grieve.  Grief is a tangled web. 

Is it right to grieve a child that is still alive?  Wikipedia defines grief as a “multi-faceted response to loss, particularly to the loss of someone or something to which a bond was formed”.  According to the leading (although not entirely reliable) internet source on all things, I am in fact responding to the situation correctly.  I can’t imagine that my pain in any way measures up to that of Wes Leonard’s parents or any other parent whose child has died.  But when it comes down to it, grieving is what we parents of special needs kiddos do.  It is a true and measured response to the “news” delivered to you by the doctors.  Despite the feeling that it is wrong to grieve, it is actually very right.  We shouldn’t feel guilty about it.  It’s something we just have to go through and no doubt, will continue to go through the rest of our lives.  Our beautiful children are not who we thought they would be.  We have lost something, something precious.  So we grieve.  We cry, we get pissed, we are in denial, we bargain, we feel guilty, we feel alone, and at some point we accept.  In the end we still have our children.  That’s where we are lucky.  We still get to hear the laughs of our little ones. 

Mercedes M. Yardley once said “Special needs children aren’t about grief; they’re about hope.”  Touchè Mercedes Yardley, touchè.

Showing Love

When you have a non-verbal child you are desperate to hear certain words.  At the top of my list are: Mommy, Daddy, and I Love You.  But this week I learned yet another lesson from my baby boy, he doesn’t have to say it, he shows it.  I’m talking about the words “I love you.” 

This past weekend I went to Denver for 3 days to visit my step-mom Sandy who has ALS (Lou Gehrig’s Disease).  My time with Sandy is limited and it was the first of many trips ahead to try and build some more memories with her.  We had a great time and I was so happy to have the time with her.  I did, however, miss my little Jackson a bunch (and Kevin too).  The morning after getting home and not seeing him for 4 days, I went in to get him out of his crib.  As soon as I said “Good morning Jackson” and he heard my voice, he started rolling back and forth quickly while making his happy sounds.  Then he stopped and looked at me and smiled!  Ugh, heart melter.  As I picked him up out of his bed I realized something, Jackson just told me he loved me.  Or rather he showed me.  Either way, he didn’t have to say it for me to get the message.  I started thinking about this and how we all want to hear people say to us “I love you.”  This new lesson my son taught me this week is this – showing someone you love them is just as, if not more, important than saying the words.  So to all of you out there, show someone you love them today.  And do it without saying the words.  Then ask them later if they got the message.  If they did, tell them it was a gift from Jackson.  The kid is smarter than most of us out there.

Assessments

Vince Lombardi said “It’s not whether you get knocked down.  It’s whether you get up again.”  When we got our first assessment of Jackson a few weeks ago it knocked me down.  Reading my son was at a 6 month development age was tough.  I just wanted to stay down.  But no matter how much it hurts, I always have to get back up, for Jackson.  So I prepared myself for the rest of the assessments that were coming.  All of Jackson’s therapists did an assessment to measure where he is developmentally.  These assessments will help us determine what services he needs in the public school system when he is transitioned in a couple of months.  Essentially they give us a starting point to develop goals for Jackson at school.  The highest he scored was 9 months from his speech and occupational therapists.  Luckily we got those assessments after I had gotten back up.  Otherwise I may have been knocked down for a long time.  Listen, I know Jackson isn’t where he should be.  I’m not ignorant or living in some fantasy world.  I know he is very delayed.  It’s reading about his delays and inabilities that hurt my heart.  To me Jackson is a beautiful, funny, active, ornery, laid back, happy, routine liking little boy who has selective listening.  To be told otherwise is offensive to me!  How dare someone say something negative about my child!  It’s like when you believe you have the most perfect child in the world and you go to a teacher/parent conference and find out your angel is really a terror.  You don’t want to believe it, but you have to face it.  Facing reality isn’t always easy.  At the end of the day though, Jackson is simply Jackson.  My son.  He may be nearly 3 years old but only a 6 - 9 month old developmentally.  I am just thankful he is developing.  He’s my baby and I love him with all of my heart no matter what.  And no matter what, I always will.