A trip on a Train

It is around 9:27 p.m. and we are in Manassas VA.  Nathan is asleep again; I think that is rather a good thing though.  He told me when he woke up not too long ago that he wasn’t sleepy anymore and asks if I had a good nap.  Today was a good day considering all we had gone through?  Any day that Nathan Ha not flipped out and starting cursing someone or just at random is a good day to me. 

First, to start off our day we arrived rather early for our 10:29 a.m. train.  I am not sure if it was even 9 a.m. yet.  If you’re late they won’t wait!  You have that option as well (to be late) but if you are, make sure it does not affect them the same way that them being late affects you.    So, departure time 10:29 a.m. and we can’t wait!  But we will.  The lady who normally we are told opens at 9a.m says she actually opens at, wait for it, 9:30 instead.  So she gets there finally after the time she is supposed to open and informs us that the train will not arrive until 1 p.m.  What?  That can’t be right because my ticket clearly states 10:29 a.m. right?  Apparently, they forget to add to their site that the trains are always late.  She mentioned it though.  I did manage to not flip out on anyone and just sit in the heat. The waiting area is air conditioned; however, I did not want to sit in there just yet I needed to “cool down”.  I wonder why they bother having schedules; they are just like the doctor’s office in that respect.  Since it takes more than an hour to reach this train station I can’t afford to go back home and return later.  Guess being what it is and me being broke, not happening.  This means I get where I am going around 9:30 or 10:00 p.m. at the latest right.  We’ll see.  I have no other way to get there so this is my only option.  So, something that was supposed to be an easier solution to an expensive and tiring car ride was exhausting me already.  The better alternative to a 14 hour bus ride was now only saving me really only saving me three hours (if you count from when I was supposed to leave to my arrival time) instead of five hours.  Fair enough it is still a bit cheaper than driving. 

Few hours had gone by and no train in sight, nor has the train that needs to be out of the way so our train can arrive, budged.  My eight year-old and I are waiting now in the a/c.  I sent my dad home didn’t think they needed to waste all day there with me.  If I needed them I could call back for emergencies.  Four other people were sitting with us waiting as well.  They were actually going the same destination that we were.  A few others came and went waiting for the train.  Two ladies and two children (together, sisters I think or somehow related).  My son kept getting too close, talking too much and touching to much as well.  She kept reassuring me that she was from a large family and was used to it, and that a she had a child in her family with Down syndrome and one with cerebral palsy so they were used to children like Nathan.  I think someone had not realized that her relative was not use to it haha.  She kept backing away and getting a little annoyed without saying a word I think.  I can’t really blame the person this time.  Normally I get offended but I know when it is time not to and now as that time.  He was too much all over her.  Nathan was just too loud that day (often is) and he tends to get really close when he talks.  He also touches (grabs your arm or hand) and in general does not rest just wants so much from you.  I think this is caused somewhat by a few things; one being his visual issues, he needs to close to see you.  The other two would be lack of understand boundaries and personal space as well not controlling his voice and how high it gets.  All in all not so bad as far as company goes, I could have done worse and I have.  My child pulled his Bob-the-Builder wheely suite case around for a while, he grew tired of his toys and vsmile so he went to walk around and visit the people.  He told them he was “collecting tickets”.  My son had already eaten the turkey and cheese sandwich I had made him for the train ride and ate some Reece cups as well while waiting.  He had a juice earlier and drank most of the McDonald’s sweet tea that his poppy had gotten for us before heading home.  My son at this point was very full of energy and conversation but above all else he was very full of this train station.  He insisted we just go back home or to Nanny and Poppy’s house to watch Netflix.  We did not; we had to go ahead with this trip.  That still did not stop him from insisting all day long that we call off the trip.  Two more people returned but went to the room next to the one we were in to wait instead.  I am glad, the numbers of people in that room was already too much stimulation for my little guy to handle apparently because he was having numerous amounts of pre-melt down moments as I call them.  Then four more people, they stayed in the hall that connected the two rooms chatting with one another.  Not all four were going, only two of that group.  This was close enough to cause my son to go near and talk and interrupt their conversation as well as force them to engage in conversation with him.  This is going to get so much better I can see it now.  All these conversational people caused so much excitement for my son he was non-stop.  Finally I convinced him to leave them alone.  We went in to sit and he was up and at the door.  He wanted outside again.  I had let him for a few minutes before but told him he is not allowed out there alone.  Something could happen (a lot of something’s really).   He collected more tickets like before then insisted we go outside.  I finally did because I wasn’t sure what words he would use but I knew it would be embarrassing plus he was having trouble controlling himself as well as before so we grabbed the luggage and headed out into the heat.  I made him sit on the ground for a bit and then he wanted inside.  I don’t want to take him in again with all those people and the luggage. So we waited, not long I might add before people came out thinking I guess that I wanted to steal the best seats on the train.  My son started up again so they soon went back inside and left their luggage.  I wasn’t the first on the train I was almost the last.  Nathan isn’t so fast on his feet and the others were full speed ahead. 

(It is currently 9:58 p.m. and we have reached Alexandria Va. Woohoo.  Now, if I had a clue where that was in relations to my trip.  Don’t have a map thing that others had earlier and they are not near me now.  Nathan has one of my shirts over his head.  He is asleep which is great.  I know it is not on purpose but I am annoyed at hearing the announcer come on because I just want to get off the train.)

 With Nathan, I have learned that the larger the crowd and the more noise they produce, the easier it is for him to have a melt down and sometimes the worse it can get.  It seems the more people the more stimulation he gets.  The more stimulation he gets the more difficult it can be to get him to do what he should and is supposed to do.  Most people think it is as simple as sayings do it or punishing him for not doing it.  It isn’t.  It takes time and a lot of it.  But eventually we get to the calm points and the listening. Lucky for me three weeks ago he got in the mood of everything causing a break down and everything setting him off even getting to do what he wanted to do at the time.  He went through it for almost two and a half weeks and finally was out of it.  I am super glad too because I am not sure I could have handle that mood on a train trip this length.  Another thing my son has trouble with when he is over stimulated and excited is being told to No.  It isn’t like he can never hear the words no, he does often enough and he responds in a kid way with the whining or pleading then going to sit down or back to what he was doing before.  Many times it is as simple as telling him why he cannot do or have something.  Other times one simple “no, you can’t have that yet” will set him into screaming, crying, begging and sometimes cursing.  (For a while we had it beat with the cursing).  He has time outs and then calms down for a while.  This is the escalation of his moods often enough.  This week they did not turn out like that, or at least this day they haven’t.  Today came with a bit of aggression and some arguing but no cursing, not much of a melt down and crying.  Actually no tears so far, we are in luck.  Many aggressive no’s and pulling away and walking off until corrected but can’t complain too much. 

1:50 rolled around.  The joys of today are building up and he is mumbling and whiney again.  Lucky for me I got to smile with relief at say “trains here!” He didn’t believe me at first but then laughed.  I helped him up and then allowed him to locate his bag and pull it.  By the time I got him up and he got his bag the others had flowed out and jumped ahead of us.  SO nice they all are to jump in front of a struggling child.  I can see they were anxious and tired but we had been there a lot longer than any of them had been and out in the heat.  One by one they all loaded onto the train with the help of some really nice older gentleman (I think the conductors).  There is now one person behind me.  A younger guy I am guessing.  I explain to the gentleman he has trouble walking and can’t really get up that step too well so he helped him.  He led him up, took his bag and gave it to him and then I went to pull up with my luggage and not just the conductor behind me helped but the young man behind me grabbed my bag from me, I got the rest of the way on and he lifted my heavy ass bag and carried it on for me.  I get on, drag all my stuff on, the conductor in front of me took my luggage and put it in an area after going through a row of seats.  This wasn’t easy considering how heavy my bag was.  It would have been easier had the man on the phone not told me I could not bring large luggage because there was no bag check at this station.  Other people a head of me had loaded huge bags on and more than just two carry-on bags each.  I was told two carry-on bags per person because of the No baggage check there.  I was so misled.  I let it go. So instead of one large bag and a small one I had four medium bags and a purse and my son’s lunch bag.  Finally we reach our seats and he sits at the window like I promised and I the isle finally.  This gets us on the train finally and it is only around 2 p.m. 

This entire trip has been a long lesson that sometimes travel isn’t the more pleasant with Nathan but it will get better.  On the train he was so happy to not be waiting outside.  He ate a little and drank some now warm juice I had packed.  It was said a chemical spill is what caused the delay.  I thought to myself, is there a chemical spill every other day?  Yea, I am so sure.  I was told this train is never on top.  Anyway, the rest of the trip seems well enough and silent for the most part.  Well, he wasn’t too loud and played with my camera a lot.  He ate and played his vsmile off and on and with his toy trains also.  Things seemed rather good.  A few times he got restless and needed to be reminded to be patient (a lot).  We rode for what seemed forever and it would have helped to have a clue where we were and how far that was.  I had a few phone calls in better here and now and also a few trips for me to the bathroom and to throw trash away.  Not leaving him out of my sight for a moment.  The one time I had rushed to the bathroom without him was a fast one and only once I knew there was no stop anytime soon.  I didn’t trust anything not to go wrong or him to go missing.  I am a little paranoid but so what.  He doesn’t like bathrooms and I am not sure why public ones scare him so much.  Mostly I think it is their toilets and the noise they produce.  That freaks him out, especially the automatic toilets.  So, it was once.  I did take him to the get food from the food car once.  They wanted like ten dollars for a hot dog.  NO WAY!  Good thing he wanted cereal.  Which the lady said they had none until she realized I wasn’t buying anything else then.  So we got his cereal and me a tea him a juice.  Almost nine dollars for everything we bought.  Glad I brought other things for him to eat and snack on.  This kept him happy awhile.   I have had to change him a few times in that bathroom which he hated. Once before boarding he had to be changed in the empty station room because he cried and refused to go into the bathroom there.  Fun times. 

Washington stop is here in 15 minutes I so cannot wait.  Not my stop but plenty of other peoples who are surrounding us.  The kid in front of us slammed back several times in his seat and rocked our trays that are attached to it.  His dad gave him a few sharp looks and he would temporarily stop.  His father was traveling with him and a younger girl.  I guess they are his kids.  They and the two next to us were all Asian and I don’t think they spoke English at all.   No talking to anyone for me except for Nathan me. 

Yay, the changing of an engine only takes about an hour.  Did I mention that our train ride was also prolonged by smokers?  Yea, about six stops lasting twenty minutes or sometimes a little shorter so people can smoke.  Great for them crap for us because we have to wait for something we don’t approve of, so glad this train station is helpful only to some.  I want to get to my destination.  They should have cute those stops out or the lengths of theirs stops when it came to letting people smoke when they stopped the train to make up for all the time they spent being late. 

We are on our way…and our stop is next according to the list.  However, a stop in between occurred and confused me but then we were back on track.  And out of there.  Getting off the train was a whole new even.  The conductors had switched a ways back, new and younger men but not young.  Stormed through the place, your stops next gather all your stuff and meet me in the front.  Before I could say a word he was gone.  Nice of him I say.  Then, I struggle to get all my stuff together and then make my way to the back of this row with Nathan.  Now, both of us can barely stand.  He had been sleeping for hours which made it even harder then normal for him to get through the isle.  I struggled carrying a few bags.  Get to the end; grab his luggage and then the handle because he was going to fall from the sudden shaking of the train now.  He wasn’t going to be able to walk down this hall like everyone else until the train came to a complete stop.  We waited then finally it did.  Dreading the stairs a head the train stops.  Nathan gets ahead of me and then to the door.  They stop him and I get up there with all my bags except his bob the builder one, which he is stumbling around with.  The man said to him rudely a few times to step over the threshold.  It was flat this time no stairs.  Nathan hesitated because there was a gap for one and two he wasn’t sure he could go it. I explained it that he can’t see well and that he needed help (like the beginning of this trip) and the man looked at him and did nothing, after a few seconds of that the other guy reached for his hand bag and helped him over a little.  Nathan got off as did I and we headed to the elevator with another lady and someone with her bags.  This is a mess and complained the whole few minutes it took us to get to the next floor.  She said I agree with ya there buddy. He sounded so grown complaining about the service and time it took to get here.  I then had to grab all bags and walk through the station and find a seat.  He pulled his bag and stumbled a little bit.  I called for my ride, he said he was outside waiting in traffic and told me where he was which I met him.  My husband could not come in due to being in traffic so I took us outside to it and then grabbed my sons bag because it was slowing him up and tripping him up as well.  We made our way out into he dark and then found the truck waiting in traffic which he jumped out and helped my son in and I loaded the bags.  It is after 11 p.m. we had now saved an hour and a half?  We head off to a late dinner and I am exhausted.  

Just for Today..

I look around and am so proud of everything my son has achieve this far and all I know he will continue to achieve.  I wanted that out there so you know, in no way does this mean I am bothered that he cannot do something yet.  This is to acknowledge that he wants to do certain things but can’t yet do them and it frustrates him.  I know plenty of moms like me are out there, watching their little one struggle so hard or want something so bad and knowing it isn’t something you can make happen.  My son has a few things under his belt at the current time he cannot achieve but wants to so bad. 

When my son was a baby he wanted to badly to sit up when he was around a year or so old.  He wanted it but could not even hold his own head up, let alone really sit up.  He laid there a lot and for the most part cried more than any other child I had seen.  Crying and screaming was a regular thing.  I was happy when he slept and I could rest.  He did not cry as much in his carrier as he did in other positions.  I told his doctor and he said “babies cry”.  Not like this I thought and then said later to him.  He would even at times start to fall asleep at around 5 months old, and then scream and wake him self up, then cry more for no reason.  The acid reflux meds did not work as well either as I thought they should have.  I think the hydro might have been bothering him when he was a little bigger mixed with the acid reflux, he was miserable.  Then there came the fact that he recognized there were things in his first year or a little later he could not get his body to do but his brain said do it.  He grew annoyed and screamed more.  Teething never really bothered him but his frustration I think made him stronger and strive to achieve what he could not.  He was full of fight.  Sometimes it is a bad thing and sometimes a good.  If I could trade a child with no fight for my son, I would not; I think his stubbornness aids in his achievements.   I am proud of him.

My son had a shunt placed on the right side of his brain a few weeks before his first birthday.  A few months before that, he was diagnosis with what I had already suspected, Cerebral palsy.  I still cried thinking of the future due to the fact I always think “how will people treat him” and I though they had better treat him right.  I know that sounds odd but I did.  Between Neurology every few months, Neurosurgeons every few months, Ophthalmologist once every three months after the first few visits. Physical therapy once a week, occupational therapy once a week, speech therapy once a week, vision specialist once a month, Cerebral Palsy clinic every few months with other testing including, MRI’s Head sonograms and CT scans... It is a wonder we enjoyed the first year or even got sleep.  But we did. 

We had ups and downs and even if I couldn’t see it things got better.  People told us during his first few months of life, still in the NICU, maybe we should give up and while we are hoping, it might be best to let him go.  He was given a 10% chance that he could be “normal” with no issues due to the IVH grade 4 bleed and other various issues including underdeveloped lungs.  We ignored the warnings and heads of the professionals around us.  “Look at him”, he was so tiny he was fighting a tough enough battle of his own, he needed us to fight this one for him.  That is just what he did.  We said no during pregnancy to signing a DNR and we said no afterwards to letting him go if he needed resuscitation after that.  We read to him, he touched him and helped him.  While machines beeped in the background we ran the video camera to capture it all.  We talked to him through a small plastic box.  We loved him with all our heart and soul and prayed to keep him safe.  He thrived slowly but he did thrive.  When he came off the ventilator the first time, wasn’t long until he as back on it again.  The second try was a great one.  He made it to a mask… cpap.  He did well once he got the hang of it.  I was too fast and impatient.  We all were but as impatient as he was to get into the world, he just did not want to do what others were doing once they got here.  It just wasn’t his time.  Blue Lights for jaundice, lasted months, machines lasted just as long.  Infections came and went.  Blood transfusions occurred more then we liked.  Things just drug on for three months.  Slowly he made his mark.  He hit his hurtles and some got knocked down but he kept going.  He had more Bradycardia’s and Apnea’s then our hearts thought they could take.  Finally, he lost his lights, oxygen and feeding tubes went away and we got to take him home after one surgery to avoid his Retina’s detaching.  But he came home with us three months after his birth on a monitor. 

The first year was the hardest we thought.  Medically it was but emotionally it would get more extreme, like it does with most kids.  Nathan never learned to crawl.  When he finally around almost two mastered the art of sitting up on his own and then scooting where ever he needed to (knocking out that pesky need to crawl) he seemed rather content.  He did have meltdowns still and defiant moments but was smiling more and more and it was beautiful.  My son has shown me much in life is waiting.  Patience will get you far.  It is hard often to deal with waiting and being patient and at his age now it is very hard.  However, with progress it is a must.  He learned to walk around 3 ½ years old with no support.  He had a walker he used but outgrew it quickly.  Talking was better at around three however wasn’t done as much as other children.  He still grunted and screeched a lot to get his point across.  Age four he was a non stop-talking machine.  Talking to my infant had paid off, now how do you shut him off?  Joking of course, I would not dream of it.

Later years more diagnosis had arisen.  More help and therapy and more struggles for control.  He does not like to get go of his own control.  This is a good thing and a bad thing.  He began school at around almost 3 years old.  Being around other children helped him blossom a lot and made me realize just how loving and caring my son was.  He worried about the other children a lot and talked about them when he got home non-stop.  Not all I could make out however he knew names.  My son, who had never really been around other children, now knew the names of several kids and worried about them.

I am jumping around and I do apologize, however it seems to be showing up in order of significance.  

I began this entry to explain.  I know there are things he cannot do and will get to but each thing that took him extra time to accomplish, also took other kids who picked it up with ease away from him.  I am not sure why however other children tend to not want to be around children who cannot do what they can.  There are exceptions.  I think that children follow are lead more then we realize.  When we are impatient and cannot tolerate people who are different, they pick that up and cannot cope as well either.  They need people who can function like them without issue.  They are not patient to deal with others who have a little more trouble and take a little longer.  I do think this is taught in most cases.  Some kids break the mold however and exceed what there parents are capable of.   

I have overloaded this tonight and I do hope it all makes sense and someone can relate (not that someone has to deal with this as well but that someone who is going through this reads it and knows they are not alone).         

My son is now eight years old and wants badly to ride a bike like other children, only he does not do it that same way others do.  He still has trouble peddling so many times he pushes with his feet.  He still uses training wheels as well as training pants.  There are so many things I wish for his future.  I hope he learns how to read, write better and spell more.  I hope he learns to drive a car, do his math and socialize with the best people.  However, just for today, I hope he learns to ride a bike with both feet on the peddles.     

Not Like Me

As I sit and read some other people's stories, it got me to thinking about a few years that have passed us by.  My son loves attention for the most part.  He wants you to talk and listen to him more than he wants to play.   He wants others to do chores so he can join in.  I have noticed though that when he plays with some children, he behaves differently then when he plays with others.  Now, I know all kids are like that, they play with some children but not others well however in Nathans case I think it is slightly different.  He gets annoyed easily at times and doesn't want to share or play with another child (certain children more so then others).  Naturally kids that are not like him, he tends to spend less time before fighting starts.  In school or around classmates at a picnic he tends to have fun, run around and switch from them to his own thing with ease.  He loves having a great time and I haven't seen him become stingy or argue with them either.  However, children without any disability tend to not go over as well.  They aren't like him, not sure if he realizes why but I think he feels it.  They are his age at times, but don't want to do the same types of things he does.  He is into different shows and different toys and not allowed to roam as far as they are.  Disability to not, that last part is a given, my child doesn't need to be two blocks away from my house by a road at eight years old.  He argues when they don't play his way, which is something he rarely does with kids at school.  Eventually because of the arguing and the way the others kids would treat him due to him not being allowed to go everywhere they can, and also because the other kids in my area had a little issue with waiting until nobody was around to tell me kid what he can't do (while whispering).  Some children are sneaky and it is something I would advise parents to watch out for.  It may seem harmless when they are little, however, when it escalates it could turn into something much worse.  Sometimes kids say or do mean things.  Nathan is a few years behind children his own age, but even some of the younger ones he can't connect to.  However sometimes it is easier for him.  I think that every kid has the right to feel ok with friends.  They should be allowed to hang around children that are like them in order to have some place to be themselves and have fun without debating and arguing over what they should or should not do.  I had to tell many times, the two children playing with my son, that what they said was not right and they had to leave if they keep doing it.  My son loves certain things, and for someone else to tell him it isn't right, well ..that is just plain not right.  So i voice my opinion to others so my son doesn't have to feel bad about what he loves to do.  Which include Nick Jr., pink and dolls but not limited to that.  He doesn't like to be told what he is or isn't supposed to like, which i guess is a good thing  He loves building blocks, CARS and anything with wheels as well.
I have to say I think the school experience is great.  He does behave less stressful there and I think it is due to a more structured environment plus more people like himself that helps him feel less stressed.