Inner World Series

Again today, Jackson woke up and was supremely adamant about not wanting to go to school.  He also wanted his mommy.  He was not able to see her at all yesterday.  We don’t know if he doesn’t want to go because this is just a normal kid wanting to stay home, or if he realizes he is being picked on.

The normal routine is to wake up, go to the potty and then get dressed.  He was so worked up, that this wasn’t going to happen.  We skipped right to watching a little TV and having his yogurt.  After a few minutes, this calmed him down and I was able to take a shower and get ready for work.  He woke up early today so I wasn’t able to do this while he was still asleep.  When I went downstairs he was happy again and talking about what was happening in the “Backyardagains” video.  I was able to pause the show, with just a little protest and get him to come up stairs and potty and get dressed.  He couldn’t really decide what he wanted to wear, but made sure I knew he didn’t want to go to school.

We went back downstairs and he watched a little more while I got my lunch ready.  He fussed about it, but he did turn off the TV when asked and walked to the door to go get in the car.  I think he wanted to be sure I knew he wanted to stay home and see mommy, but knew he was going to have to go to school anyway.

In the car he talked about the mess on the floor (fruit snack wrappers from the little bags he has every morning) and I said I would have to clean it up.  He said he wanted to help.  He then went on to talk about cleaning mommy’s car as well.  (I know hers needs it as well.)  He went further,after trying to figure out what he was saying, to talk about cleaning his trains.  Mommy may find some odd requests when she picks him up and gets home, but hopefully it can be some fun play.

At school, I tried to give some basic run down of what we learned last night.  I’m still processing everything, but the first class was a lot of intro stuff instead of getting down to specifics to our exact needs.  Anyway, I was talking to the lead teacher about how we will have to try and engage Jackson more, but will have to follow his lead.  I got a little more details than that, but the response I got was not entirely encouraging.  She said to let her know what techniques we were using at home and they would try them there.  My frustration lay in the fact that I was trying to explain the there wasn’t a specific game or technique (it’s really more a philosophy to me) to use, you just had to tune into what Jackson was doing and tap into his focus.

She was saying all the right things, but she just didn’t seem to get it.  We’ll see how it goes.  We don’t think his current daycare will be a long term solution.

Whenever tackling a large and detailed topic, you inevitably leave something out.  I talked a lot about the bad and the ugly, but not the good.

Jackson is a very wonderful child.  He is not always withdrawn as previously describe.  He has an odd dynamic in that he becomes very responsive and involved if the activity is high energy. He loves to play chase and hide and seek.  Mostly just the hiding part though.  He will be very animated and happy during these games.  Overall he is a pretty happy kid.  He is also extremely affectionate.  Much more so than I think other children his age are.

With his behavioral issues, it is only quieter play that requires more concentration, that he disconnects from everyone else.  Even during these times, it seems that he hears us if we are talking to him and is aware of what is going on, he just does not choose to respond.  Making eye contact is one of the biggest issues.  He will talk to us, but not look at us.  He does hear what we say in response though.  I’m not sure if he is too aware of his environment and can’t shut off all the data streams coming in to be able focus on people.  He has figured out through different play how to shut everything out, but that truly means just about everything.

So as difficult a time as we are having, things could be much worse.  We are blessed with a happy child that is loved dearly by his family, and is able to return that love as well.  He is not completely closed off to us, we will just have to work harder to pull out the wonderful child that we know is at times hiding inside.

As cliche as it sounds, Friday January 29th 2010, will probably mark the start of the beginning of a new life for Nicole (my wife) and myself.  Even though family and friends may be the only ones to view this, I’m writing this out for those that have no knowledge of our situation.  I can only hope that as our story unfolds, it might help someone else out there having similar issues.

Jackson is our first child, but we have a second on the way.  He will be three years old in a few months.  We have been concerned about his behavior for some time now.  It started with biting at daycare soon after he was able to walk.  He was shuffled between classes because the thought at the time was that he was bored.  This seemed to help for a little while, until the aggressive behavior started up again.  He was old enough to speak, but he did not seem able to communicate when one of these episodes would happen.  He was again shifted up a class to be with older kids to try and see if a change in structure would help.

Things would be great for two weeks and then suddenly the next week was horrible.  He would bite someone on Monday, push other kids on Tuesday and hit and kick on Wednesday.  There did not seem to really be a pattern or know reason for the these behaviors.  Over time with trying different things at home and communicating with him more and more, and him being able to understand better, these incidences have greatly decreased, but they still happen on occasion.

Tied in with these behaviors, Jackson has always been a picky eater and averse to getting his clothes wet and certain textures.  We got him involved in the “Babies Can’t Wait” program in our area.  We thought maybe these sensory things were the root of his problems.  His occupation therapist from the program has been very good at observing him and giving us techniques to use to help with his sensory needs.  These techniques seem to have helped some, but issues still arise, and she is only able to observe or meet with us once every week or two.  Although I think they are doing what they can, the process doesn’t feel like it is moving fast enough for us.

On our last meeting, they had suggested that he be taken to a Behavioral Pediatrician to be truly evaluated.  Also there is the Marcus Center here in Atlanta that helps deal with these kind of issues as well.  The only problem with this is that there are a total of 5 Behavioral Pediatricians in the whole state of Georgia.  The Marcus Center is also extremely backed up as well, so we weren’t going to be able to get an appointment until about August.  (It was late January when trying to make appointments.)

We talked with family and friends and the “Babies Can’t Wait” (BCW) people about what was going on and what we would/should do.  Seeing a Behavioral Pediatrician seemed to be the most common suggestion, but getting in to see one was still a problem.  Seeing a Child Psychologist was also brought up.  I will admit that we both had some hesitation with this idea, because I think neither of us wanted to admit that there may be enough going wrong to have Jackson see anyone with a “Psychologist” tag to their name.  We really didn’t know what to do.  Getting him in to see anyone as soon as possible was our biggest drive.  All of these options are expensive as well, since most don’t take insurance.

My aunt is a very respected doctor in the Atlanta area, and was able to pull some major strings for us to an arrange an appointment with a Child Psychologist.  I was still hesitant about the “Psychologist” tag, but my aunt is extremely intelligent and remembers everything, and I’ve always trusted whatever medical knowledge she gives out to.  (Following that medical advice, being a stubborn man, doesn’t always happen as well though.)

We talked with the doctor on Wednesday and setup and appointment for that Friday.  Nicole talked with the BCW people and they were floored at the speed of the appointment and who we were going to go see.  This was very reassuring.  We took Jackson in for the 10:30am appointment.  There was a simple desk in the room and two chairs for each of us, but otherwise toys in boxes and on shelves throughout the room.  We brought all our paperwork, and we talked for a little while as Jackson played and she observed.

Later in the session, she had us each try and interact with him and the she got down on the floor herself to play with Jackson.  There was more play and interaction throughout the session, but the consensus was that Jackson has problem with engaging with others and sometimes his surroundings.  The doctor was hitting every nail on the head, knocking them painfully through the facade of what we thought was normal.

She agreed that there were some sensory issues going on, but the aggressive behavior was a result of him not being able to engage properly in the world and people around him.  Autism has been brought up many times by many people, but no one is saying he is autistic, just that he has some autistic tendencies.  Regardless, bring up autism and your child in the same sentence is a bit scary.

The session ended and although a bit disheartened at what we heard, we felt better having seen someone early enough in his life to do something about it.  Saturday night the blinders really came off though.  We went to a birthday party of a friend of ours from church.  They have a little boy about the same age as Jackson and there were going to be other little kids there as well.  They have a big play room setup with lots of toys for all the kids to play with.  After hearing from the doctor about what normal kids do and don’t do, it became pretty apparent to us how much Jackson was different.

He doesn’t come ask us to play, or watch us to see if we are watching him.  He doesn’t even really make eye contact.  The other little boy tried engaging with Jackson to get him to play, but he acted as though he wasn’t aware of him.  He played by himself, and mostly performed simple repetitive tasks.  We tried to engage with him as well, but it didn’t seem like we where there most of the time either.  He continued what he was doing regardless of our requests or tries at changing up “the game” he currently was playing.

Other kids ran around the room playing make believe with the various toys and talking and watching the other adults, but not Jackson.  It was heartbreaking to watch him and see the reality of his condition.  We feel like we have started making some changes in our own behavior that will help bring him out of his shell and interact with others as he should, but everything is still all very new and raw and overwhelming.

For the past week or two, Jackson has been upset in the morning and not wanted to go to school.  We just thought this was a case of him preferring to stay home and watch his favorite movies and play with his favorite toys.  Today I think we found out the real reason why.  It seems that some of the other kids have already started picking on him.  Jackson loves to play chase, but it seems the other boys either always make him the chaser or the chasee.  He is never included in the other group.  I don’t know how long this has been going on as this was the first I had heard about it, but it seems like this has been a past time the teachers have tried to break for a while.  He was also pushed by one boy and had wood chips thrown at him by another.  These kids are all around three years old, and yet they know he’s different and are isolating him even further from the group than he already is.  He didn’t retaliate from either of these incidences, but later in the day pulled a little girl’s hair.  No one seems to know what caused this, but I don’t know if it was a delayed response to being picked on.

We have (or at least from my perspective) have not always had very good communication with his daycare about what has been going on at school.  We have always seemed to find out way after the fact about behavior issues that have been going on for weeks or more.  This bullying type of behavior seems to be the latest in the trend of lack of communication on their part.  We try to ask what is going on, but apparently don’t know the exact right questions to prompt the information that we need to know what is really going on.  Needless to say, we are trying to figure out all of our options for his care during the day while we have to go to work.  I’m not saying his daycare is bad, they just don’t seem to know how to deal with a child that is outside the norm.

Tomorrow night we start a five week class that will hopefully teach us techniques and skills that will help Jackson engage with us and others.  These are going to lifelong skills that we will have to learn, practise, and adapt everyday.  We will know more after the first class, but hopefully we can start feeling like we’ve at least turned a corner and are going uphill.  As of this moment, it still feels like we are on a roller coaster ride going down the steepest hill you can find.