The Not So Terrible...FIVES?

I always hated the expression, "the terrible twos."  It seemed so rude and disrespectful to the poor child.  And it seemed like a projection of what the world thinks is "typical" behavior of a two year old.  You know - when they start to get into all kinds of mischief and trouble?

Well, I'm here to tell you - I have discovered that the "terrible twos" do not discriminate.  They aren't just for two year olds.  And, as it turns out, they are not so terrible.  At least in this house.

Gavin, it seems, is going through the NOT so terrible FIVES!!

Last night, as I took - ahem! - a bathroom break, this happened...

I wasn't gone very long (how long is just none of your business, thank you!) and before I left the room I did a sweep with my eyes.  You see, Gavin has been cruising the counters and the kitchen island looking for ANYTHING he can get his hands on lately.  He pulls it down to look at it, put it in his mouth, shake it and/or throw it.  Sometimes it's all of the above and in that order!  But last night I saw nothing that he could potentially ruin, break or hurt himself with - so I thought it was safe to go to the loo.

When I walked back in the room he had a tub of VERY concentrated lotion open.  He was laying in it - smearing it all over the floor and smiling.  I ask you - how in the world can that NOT make you happy?

First of all, there's the mystery of how he got the tub open at all.  Then, there's the whole sensory component.  He obviously loved how it feeled in his hands - and everywhere else!  It was everywhere.  Globs in his ear... in his hair... on his clothes... in his mouth... all over the floor... all over the glass front oven (which was really tough to clean!)... and all over the cabinets, counter tops and even up his nose.  He was SO pleased with himself.

I love that he's acting this way even though it really keeps us busy and on our toes!  Gavin used to be the easiest one.  If you left the room you could pretty much guarantee that he'd be in the same spot when you got back.  But this new Gavin is so much better.  I'm so encouraged that he's moving up the developmental ladder.

You can see the difference in him in this little video.  He's purposefully playing "Peek a Boo."  And when I try to change to another activity, he clearly shows me he wants something else!  Take a look...

It's been very cold and rainy all week.  I suppose we're experiencing London weather to feel closer to Ed while he's there.  He will be coming home tomorrow - yay!!

The weather has not been great for my arthritis, unfortunately.  Yesterday I paid a visit to my Rheumatologist and we are planning to get me set up on the Orencia infusions just as soon as our insurance authorizes it.  I've been having some pretty bad days.  A few mornings I was afraid carrying Gavin down the stairs!  My knees ached so bad - and he is so heavy and squirmy - I was fearful that one of my legs would give out.  It really sucks to have arthritis like this at my age.  I'm not that old!!

The boys and I have enjoyed our "alone time" this week... and I have lived a very envious single life each night while Ed has been gone.  Why, just last night I was in my pajamas and black socks mopping up lotion from my kitchen floor while listening to the Dixie Chicks.  

It's okay to be jealous.

Developmentally Delayed...

So...here's the bottom line.

The developmental pediatrician's impression of Gavin (both from meeting him, historical medical information and information from me) is that our five year old superhero is at a 15-18 month level developmentally.

Excuse me while I go throw up.

It's not that this is a surprise to me.  To be honest, that's just about where I placed him in my own mind. But hearing it - it's the one thing I've managed to avoid hearing, thinking about, discussing until today.

She also told me that Gavin will likely be diagnosed with an "intellectual disability" (that's the new term for the old and outdated "mentally retarded" that is no longer used).  You'd think that would bum me out more, right?  But it doesn't.  I don't care about titles like "Cerebral Palsy" or "Developmentally delayed " or "Intellectual Disability" - because more titles means more services for Gavin.  And I'll take anything I can get to help my little man along the way.

During the visit, she asked a lot of questions and was quite surprised by a lot of my answers.  Halfway through the visit it kind of dawned on me why people might go to a Developmental Pediatrician.  She was expecting to offer me information - plug me in to services I didn't know about - or explain different treatments to me that I hadn't heard of.  She soon realized that we've pretty much met everyone, tried everything and got ourselves plugged in to just about anything and everything out there for Gavin.  She wasn't all that impressed with our alternative treatments (Hyperbaric Oxygen, Dr. Trish, Acupuncture) - many doctors aren't.  But, as I told her, you can't argue with results.  We were lucky along the way - we had many knowledgeable people placed in our path to help us and guide us.  Gavin's Early Intervention nurse, Kim, was and still remains a wealth of information and a very compassionate friend.

She sat Gavin at a table and asked him to do basic things - grab a crayon and draw, place shapes into a shape sorter, put a square block in and out of a cup and use a peg board.  Gavin didn't perform. At all.  I felt my anxiety rising - but decided to let it go.  I just didn't want to care.  It's not like I could have forced him to perform.  And I already knew her estimation of his developmental age was only partially based on his performance for her so it wasn't like it would have helped matters.

But what exactly does this mean?

A few years ago, I had an expert to the house to discuss Gavin's therapy and his developmental progress.  When she looked around our playroom (that some say resembles an aisle in Toys R Us) she remarked that I was doing him a disservice by having so many "cause and effect" toys.  Gavin can easily manipulate his toys.  He pushes a button and things light up or play music.  He spins the toy and it makes noise or sings.  He can easily access his books and turn hard pages.  She thought, in order to motivate him to make progress, I should strip the room of all those kinds of toys and replace them with old fashioned manipulatives.  Shape sorters, bead mazes, etc.

Out of fear that I was holding him back, I did it.  For the following three days (that's as long as I held out) all Gavin did was bang his teeth.  There was nothing in that room to engage him, excite him or interest him.  So he banged his teeth on the furniture.

I've thought about that little experiment a lot since then.  Until today, I still thought I did the wrong thing by giving him all of his toys back.  I still believed I "held him back" by making it so easy for him to have fun.

I guess, in a way, today was validating.  If Gavin is operating at a 15-18 month level - and if this doctor is telling me that at this point, at five years old, it's not an option for him to "catch up" with is peers - then shouldn't we meet him where he is?  Just as I wouldn't expect Brian to play Chess at 3, why should I expect Gavin to play Legos or enjoy an Abacus?

The one thing that she said she could help me with?  Pointing me in the right direction to find someone to talk to us about long term planning.

Excuse me again while I go throw up.

This is the one area that keeps Ed and me up at night.  We can save all the money in the world for Gavin...but who will care for him if we die?

Think about it.

We can't put all the pressure on Brian.  He will grow up and have his own life and may not be able or want to care for his disabled brother.  We can't assume family will take him in.  That's a lot to ask.  And I'm the youngest in my family which means if I'm dead of old age - they probably are, too!  The thought of Gavin sitting in an institution being "cared for" by strangers is something I call a nightmare.  

It's something that a lot of people don't talk about - or even think about - but it's a harsh and frightening reality.  It's one thing to assign guardianship of your typically developing children in the event you suddenly die and they are young.  It's a whole other story to plan for a child like Gavin.  There is so much involved and it's SO much to ask of someone.

Have you made plans for your young child's future?  Or, do you have an adult child that is being taken care of by someone other than you?  If so, I beg of you to comment here on this blog so other's can benefit from your advice and experience.  What did you do?  How did you plan?  Who did you talk to?  Please share here and not on Facebook for the benefit of those who are not on Facebook.  I know we're not alone in our fears, so your thoughts and experiences could help so many people.  

Excuse me while I take a deep breath.  And scream.

The highlight of our day?  Besides the nice one on one time that we always enjoy at the hospital, Gavin and I made a special delivery!!  Thanks to our wonderful friends, Tracy and Beth, at the Just Between Friend's Sale...we were able to bring a gigantic box of toys for all ages to the Child Life Program at Dupont!!

Child Life is not just a huge room with just about every toy, game, book and DVD you can think of.  It's not just a place where babies can play with toys...little kids can color...or older kids can play pool.  They also go room to room for those children that can't leave their beds and bring them whatever they can to pass the time.  When Gavin was in the ICU this summer and we watched every movie we brought five times, they brought him some from their collection.  And they sent him home with a new stuffed toy that sings Christmas songs.  Gavin loves Christmas music.

We were so happy we were able to contribute to their wonderful program - and grateful to all the sellers at the Just Between Friend's Consignment Sale that marked their unsold items for donation!!

It will really make a difference in the lives of the patients and families at DuPont.

Off The Charts...

Tomorrow morning, Gavin and I will take a trip to DuPont hospital for his first visit with a Developmental Pediatrician.

I'm not going to lie.  I'm dreading it.

I have always had a bit of a chip on my shoulder about Gavin's developmental tracking.  From way early on, it was clear that he was delayed.  Then he was hit with a very serious illness - RSV with Infantile Botulism on top - that set him back even further.  And from way early on, it was chart this...check this...compare with this...to the point where I couldn't take it any more.

I used to show up for Gavin's well checks with a typed page titled "What Gavin CAN Do" and I would  list all of his milestones to date.  Why?  Because for the first handful of visits when the nurse would go over her sheet and ask "Is he holding his head up?" nope "Is he holding a toy?" nope "Is he..." nope, nope, nope.  NOPE!  I would always cry the entire drive home - and I hated thinking that Gavin could feel my sadness.

The thing was - and is - I just don't care!  I don't care about charts or graphs or what other kids his age "should" be doing.  I care about Gavin and helping him to be the best Gavin he can be.  It's a confidence shaker sometimes to get wrapped up in "developmental" expectations.

Actually - getting wrapped up in any kind of expectations isn't a great idea in any situation.  Hmm.  I just had me a lightbulb moment.  

I made the appointment with the Developmental Pediatrician begrudgingly.  It was suggested by Gavin's geneticist, Dr. Gripp, who I really trust.  She just thought it would be a good idea.  The appointment was made months and months ago so I hadn't thought about it until this week.  I started to panic today about what information I should bring with me.  I started searching through Gavin's medical files (I need a secretary for them - it's a MOUNTAIN of information) and reading through his CaringBridge journals and got lost.  It was a walk down memory lane - in a good way and in a very painful way.  I had forgotten just how challenging his infancy was.  Halfway through, I called DuPont and asked them what I needed to bring.  They said I had already filled out a packet with all of his developmental milestones months ago and mailed it in.

Oh.

I tend to block out things I don't like thinking about.  I mean, really - does it matter that Gavin still wasn't holding his head up very well after he was a year old?  Does it matter that he was almost two before he pulled himself up to a kneel?  Does it matter that he's five and still eating purees?  They aren't going to tell me anything I don't know.  And I stopped comparing him to his peers a long time ago.  I just don't care.  Is that wrong?

Each time Gavin is evaluated by professionals and there is a written report that details his skills...where he falls on charts...how he fails in certain areas...I avoid it.  Seriously.  I don't read it.  All I care about is telling them all the awesome things he IS doing - he CAN do - he COULD do - and then working with them to come up with a plan of action.

Nothing is going to change the fact that Gavin is developmentally delayed.

But...nothing is going to change the way we care for him, help him, love him or treat him if they tell us what his "developmental age" is.

Each day, Gavin does some little thing that makes me jump for joy.  (How lucky am I??)  Like today, his teacher told me he did something incredible.  If they thought it was a fluke when he first did it - he did it again to prove it wasn't!  During circle time, they were asking the kids to pass a paper die cut apple around.  When it was Gavin's turn, he reached over with his left hand (his LEFT HAND!) across his body to take the apple from his classmate.  Then he held it for a second before turning and handing it to the classmate on his left!!

Find THAT on a chart.

I have no idea what I'll hear tomorrow...or how I'll feel on the way home...or if I'll learn something new at all.  

All I know is - at this house, we look towards the future.  And wherever Gavin may fall "developmentally" means nothing to us.  Our love and acceptance for him is off the charts.