Monday, 31 December 2012

What to Say and When to Say It

Something I have struggled with for a long time is the decision of when I should let someone know that my children have autism.  There are many circumstances where I have to inform people- obviously school, babysitters, etc are a no-brainer.  I am talking about when we are out in public- when the boys are overstimulated and having a meltdown, or when their behaviors are just, well, unusual.  I don't know if I need to explain, or if I should just let it ride.  While we were on vacation, I let it ride the entire time.  We didn't encounter that many people anyway- mainly at the Wright Brother's Museum, and I'm not gonna lie, we did get some dirty looks there.  Jack was not naughty- just extremely exuberant, and very effusive when it came to talking about airplanes- of all types.  I guess it's frowned upon when your child decides to demonstrate said knowledge during a formal presentation to a group of all adults on Christmas Eve.  Oh...well.  I knew I would never see those people again, so I can live with that. 

It's acquaintances, family members of close friends, neighbors, that I have a tough time with.  I don't want to walk around advertising to everyone I meet, however, I don't want people to think my kids are just naughty or out of control.  This is apparently a common problem, otherwise, these would not exist:
http://www.tacanow.org/store/My-Child-Has-Autism-Cards-100/

I was presented with one of these cards a little over a year ago by the receptionist at the boys' OT.  She has a daughter on the spectrum as well.  And I was bringing both boys in by myself every Saturday for their appointments- between the transitions of getting out of the car, taking off shoes and jackets, detaching from toys, and then leaving mom, there was a meltdown at almost every session.  I mean multiply those transitions x 2 and it's pretty much inevitable if your child has autism.  There are many parents whose kids are seen at the OT who are familiar with autism, but some are not.  And I was getting looks.  I get looks a lot.  I was offended by the card at the time- as though the receptionist was saying the boys were being "bad".  I get it now.  Just had to come around a bit.  I have never actually given one of these cards out, but actually think it would be fun to hand it to someone who is giving me the evil eye on the playground when my son won't stop spinning the steering wheel because he is obsessed with spinning things, and freaks out when another child tries to join in.  My kid can share!  Just don't touch something in his area of interest! Ha

Actually I take that back.  We went to a close friend's daughter's birthday party yesterday- at a bounce place.  After about 20 minutes at the party, my kids were parked at opposite ends of the facility- one continuously spinning the propellor on an aircraft carrier in the toy area, and the other chowing down on potato chips while daddy watched the football game.  Neither of them had much interest in socializing- although Jack did make sure to find the birthday girl and wish her a happy birthday.  Also, Jack handed off the aircraft carrier to another little boy after awhile and moved on to some robots- score one for Jack!  At these events, I bring a cooler- I have their gluten/dairy free pizza and cupcakes.  I am glad they are available, so we can go to these events relatively pain free.  But people are always curious.  I wonder if they think it's odd that I give Jack at least 3 opportunities to leave the area when the birthday song is coming up- he's caused distraction from the birthday kid many a time when he screamed at the clapping that is inevitable after the singing.  Yesterday I was so proud of him- he opted to cover his ears b/c he wanted to be there for his buddy.  Should I explain these alterations in "procedure" to the people sitting next to us?  I chose not to.  Then Nathan saw the balloons tied to the backs of all the chairs and wanted them- like really wanted them.  Nate doesn't often want something, so I handed him an orange balloon- feeling like a nice mommy for untying one when it wasn't time yet.  He looked at me like I had three heads and proceeded to cry and then try to rip a BLUE balloon off of the chair next to him.  I switched them- guess I know his color preferences now for the first time ever.  After people started getting up from the party table, he proceeded to walk around the chairs and "free" all of the blue balloons.  He wanted to hold the string for awhile, but then he wanted to watch the balloon float to the ceiling.  One time he let go and my friend grabbed the string so he wouldn't "lose" his balloon- a small meltdown ensued.  Then my friend's cousin, who is tall, grabbed the string for him and handed it back to him.  Nate let go again and the cousin handed it back to him again, after the balloon reached the ceiling.  This continued for about 10 minutes, release, grab, hand back, repeat.  My friend's cousin is a great sport. 

I looked at my friend and expressed to her that it is at times like this that I wonder if I should just let the family member know why Nathan is so hyperfocused on such a simplistic activity.  This would be common for a baby, but Nate's three.  I still didn't tell him, just talked to my friend about it.  She caught up with me a few minutes later and let me know that she told him- and he said, oh, ok.  He said he had friends with a child that has autism.  But he didn't think anything of Nate's behavior really- not until he knew.  So was it necessary to let him know?  Probably not.  I guess I am still struggling to find that line. 

Sunday, 30 December 2012

AWAY

Sorry it's been so long- I will be honest, I've been pretty unmotivated to write since we got back from our trip.  Lots to do, non-sleeping children, and just the need to continue spending quality time with them.  We trekked off to the Outer Banks for Christmas- and not just the Outer Banks, but Hatteras Island.  And not just Hatteras Island- but all the way down to Hatteras itself.  For any of you who go to Duck, or Corolla, it is worth the journey to stay all the way down on the island.  Sooooooooo peaceful, even in the summer, which we have done before too.  In fact, the last time we went, Jack was 3 and Nate was 6 mos- prediagnosis.  I think that's part of why we wanted to go back- we remembered it as a happy time, before things got so complicated.  Of course we didn't recognize that at the time.  Ha

By traveling so far away we took all of the holiday hoopla completely out of the equation.  It was just us.  I was nervous that this would be so much work that it wouldn't be relaxing, but that was not the case at all.  We just reminded ourselves over and over again that there was no agenda, there were no expectations.  Just us.  And it worked.  The only major outing that occurred was a trip to the Wright Brothers Museum up in Kitty Hawk- don't think I have to explain that one :). 

Other than that, we pretty much settled in for some good old family time.  Hatteras Island is the antithesis of the typical beach "resort", especially in the winter.  Yes there are some souvenir shops, but few and far between, and mostly closed in the off season.  There is ONE major grocery store on the 60 mile long island, and fewer than 5 gas stations.  There is one highway that goes all the way down, and it was actually closed from September until about 2 days before we left on our trip.  They had an emergency ferry in place after hurricane Sandy.  They just reopened the road.  It's one lane, and they are constantly placing huge sandbags, as the waves crash right behind them.  It's quite a site. 
We managed to make a pretty nice Christmas- I brought a small tree and some cheap ornaments, and I sat down and did some of the things I never find time to do around the holidays.  Gingerbread house, letters to Santa, art projects (which Jack despised of course).  Even managed a pretty nice Christmas dinner. 





A few shots from a very relaxed day.
Then of course there was the beach...





We were the ONLY ones on the beach every time we walked over there.  There is just no greater feeling of peace. 






I highly recommend a beach Christmas to all families, but particularly autism families.  I'll say it again- peace.  Priceless!

Friday, 21 December 2012

Merry Christmas!


We are going to be off the grid until after the holiday, so I just wanted to wish everyone who reads our blog a wonderful holiday.  I feel your support on a daily basis and appreciate it so much.  Love to you all!




Thursday, 20 December 2012

Up Close and Personal

As mothers we all have the privilege of having that extra special "close" relationship with our little ones.  I know daddies have it too, but I still feel like there are certain things that are saved for me- booboo's, illness, tantrums, and some extra special snuggling to make up for all of that.  Nathan has taken these special privileges to a whole new level.  He has taken to waking up in the middle of the night lately- he may have done it in the past and put himself back to sleep because he was still confined to the crib, but now that he's in a toddler bed all bets are off.  So long story short, I have ended up sleeping in a toddler bed with him for several hours several nights a week.  My back is suffering big time.  I think there is a misconception out there that kids with autism are not affectionate, don't like to be close to people.  Couldn't be further from the truth with Nate- seriously couldn't. be.

Instead Nate likes to be extra close.  He likes his face literally touching mine at all times when in bed, he likes our noses touching.  Sometimes even this is not enough, he likes to splay his body on my head.  And fall asleep that way.  And wake up if I try to move him.  Awesome. 


Oops, published when I didn't want it to.  Anyhoo, so last night went to a whole new level.  I passed out in the toddler bed, face to face with Nate and woke bc my cheek was wet.  The boy was licking the palm of his hand and rubbing it on my face.  Guess I wasn't very entertaining when I was asleep.  His reign of goofiness has continued this morning- carrying as many balloons as possible while running around the house, deciding to continually hit the menu button on the TV just to make Jack mad.....this boy has ants in his pants today!!!





Brotherly Love.....

Tuesday, 18 December 2012

Lesson Learned

Tonight John and I went to our marriage counseling session.  It's a very touchy time of year for many people, and we are certainly no exception.  As much as I am looking forward to Christmas, my mind is still somewhat stuck on where we were as a family last year- there is only one word that fits- reeling.  There was not one aspect of life that was stable.  We were still working on accepting the boys' diagnoses.  We were changing diets, initiating many new therapies.  Experiencing major financial strain related to the boys' medical needs.  And of course going through marital strife.  The thought of even celebrating Christmas last year was overwhelming- I know I just wanted to crawl under a rock and stay there. 

Alas, last year John and I were not nearly as wise as we are now.  We tried to make a nice holiday "for the kids".  I have come to realize that that phrase means nothing if mom and dad can't survive the experience.  The boys can not enjoy their holiday without us- they need us even more than most kids need their parents.  But rewind- we hadn't realized this yet.  And so we tried to keep up appearances, aka do everything the way we always had, including a long-winded dinner at a restaurant on Christmas Eve, church, and then hosting a big Christmas dinner at our house the next day.  Bad, bad, bad.  I preordered the boys' dinner at the restaurant to ensure it was gluten and dairy free, and the food was brought out basically right away when we got there- noone in the family ordered for an hour after that.  Result- meltdowns from both kids, picture Jack falling out of his chair multiple times, hands over ears, crying/yelling about all of the noises, Nathan banging his head on the table.  I carried him into the next room and put him down thinking maybe if he could walk around....he proceeded to lie down on the floor and bang his head some more.  We tried, we really really did.  The pressure was just too overwhelming- we left before dinner was served, we skipped church.  We went home and we both cried.  For our family, for the fact that we could no longer have a dinner out, for the feeling that noone in our families really understood what we were going through.

You would think that after this we would cry uncle for Christmas day.  But no, we pushed on.  We had a lovely Christmas morning, even had fun doing some of the cooking.  I will not even attempt to describe the rest of the day, so I will just say that it was one of the worst days I can remember- and a definite low point for our family.  I didn't feel like we could carry on at all after that point.

Yet here we are- stronger than ever.  We definitely learn something from every experience in our lives.  Well here is what I took from this- sometimes pretending is not ok, it's not the right thing to do.  There is no way to "protect" our extended families from our "new normal".  We can't do the same things anymore.  And to say that we were doing it for the kids is crap.  They certainly weren't enjoying the restaurant, they didn't give a hoot about a standing rib roast.  They would be happy with grilled cheese and chips.  Our marriage counselor described last year so concisely this evening.  He said that last year, we were like the violin players on the Titanic, who continued to play as the ship sank to give the other passengers a sense of comfort/normalcy.  It was torture for us, and did it help our families?  Not at all.  I am sure the violin playing did nothing for the passengers as they fell to their deaths either.  Did those violin players die?  Umm, pretty sure, yes.  So it didn't really work out for them either.  Sometimes, you just have to jump ship.  Circumstances change- accepting this is often the hardest thing to do. 

Accept it we have.  We are shaking things up this year big time.  We are having a Christmas that our family will enjoy- most importantly, one that will be good for the kids.  More on that later, let's just say it is going to be an adventure for us all.  We are focusing on the progress and growth in our family- and we are acknowledging that what was good for us a few years ago is no longer ok.  We are being "us". 

Sunday, 16 December 2012

Counting Our Blessings






I haven't been able to bring myself to post the past few days- I have felt like talking about my kids would be somehow disrespectful to the families in Connecticut who are going through such horrible pain right now.  There is nothing going on in my life that is important enough to mention.  So instead I am just going to thank God for all that I have.  For these two beautiful boys asleep on my lap.

For my sweet sweet five year old who has allowed me to call him nothing but "Eagle Eyes" the pilot for the past 2 days.  And Nate is Hawk Eyes, I am Falcon Eyes, and daddy is Snake Eyes. 



For the same little boy considering his Under Armour, which was recommended by his OT (compression type) instead of the expensive weighted vests or "official" compression clothing, his flight top.  And refusing to wear anything but this all weekend.  All of the five year olds that were lost on Friday had similar, endearing quirks I am sure.  I am all the more thankful to be experiencing Jack's this weekend. 

When he stepped off the bus on Friday I almost squeezed the life out of this beautiful child.  He said "are you loving me mommy?"  Then he asked for Chick Fil A.  And he got it.

HOW are these parents walking through their days?  I can't imagine how much pain they must be feeling.  I miss Jack while he's at school.  The thought of forever.....it's just too much to even consider.  I am afraid to send him to school tomorrow and  keep trying to remind myself that he is just as safe as he was last Monday.  Somehow, that doesn't ease my mind right now.  I, like most of the moms, dads, and well, people, I know, am just devastated by what happened in Connecticut.  I will continue to pray for all of the victims, and I will keep squeezing both of my boys extra tightly.  Look at Jack- he is in kindergarten- most of the child victims?  They were his age.  Beyond Comprehension. 

I will also pray for all of the teachers throughout the country who are returning to their jobs tomorrow.  Friday's events reminded all of us of how much trust we put in our schools every day- how much responsibility the teachers and administrators shoulder every single time they go to work.  I can imagine that even entering their classrooms will give them pause.  Teachers are so important- and the reactions of the teachers in Connecticut during this crisis just demonstrates further that our children are not just taught while they are in their care, they are loved and cared for.  Let's all remind ourselves of that when we put our precious children on the bus tomorrow morning.

Wednesday, 12 December 2012

Career Path for Jack!

I have come up with a BRILLIANT way for Jack to capitalize on his obsessions!  It came to me this morning while I was trying to work on a case before taking him to the bus stop. He was interrupting me approximately every 30 seconds to talk about BF-109's, to question whether mine had a yellow or striped bolt, how many blades the propellor might have, or just to repeat long winded parts of you tube videos he has watched on the subject. 

I thought about how much this drives me absolutely bonkers.  Yes I am proud of his, ummm, focus and memorization skills, but he never ever ever stops.  I have come home from errands to find John looking despondent, Nate sucking his thumb and Jack saying, "daddy BF109, can we watch one more messerschmidt video??".  We do learn to tune him out to a certain extent, but the bugger seems to notice when our answers are too generic and will repeat his questions over and over until we give a meaningful response.

So I've got it- surely this technique could be put to excellent use in the military.  With all of the controversy over the methods used to question military prisoners, I have now come up with a completely harmless (well, physically) torture method that is sure to get some answers.  Just lock them in a room with Jack and ask him to talk about BF-109's.  After an hour or so, they will be willing to tell you anything you want to know- TRUST ME!!!!  Love my boy, but I am so over german airplanes I can't even express how much I miss robots and killer whales right now!!!

Tuesday, 11 December 2012

Totally Unexpected Validation

We have had the same daycare provider coming to our home for approximately the last year.  She is a retired school teacher and has been just what the doctor ordered. She has a very no nonsense attitude about things, which has been wonderful with regard to working on Jack's fine motor skills.  She totally ignores his resistance and isn't insulted when he gets upset.  She raised three boys herself, she knows what she's talking about.

Working with two little boys on the spectrum has been one aspect of this job that is new to her.  She's wonderful about complying with the boys' diets and with other planned activities I have for them.  She is very respectful of my parenting, although this doesn't stop her from offering her opinion from time to time.

She has always been pretty matter of fact about the boys' issues, and I honestly never thought they affected her that much.  So I was really shocked by what happened while we were talking yesterday.  I had of course invited her to Nate's birthday party, and was frankly pretty disappointed when she said she wouldn't be coming.  She felt like it was a family event and she didn't want to intrude, which I get, but from my perspective, she is one of the few people that Nate has a bond with, so I really wanted her there.  We didn't really talk about it, and she brought his gift over last week so they could play with it together.  She walked in yesterday and asked how the party went.  At first I gave her the "party line"- you know, "really well, everyone had fun"  yada yada.  But she asked me, did Nate seem to get it?  And I told her he wasn't into his gifts, not really into much, but at least LOVED all of the balloons.  To my utter shock tears just started streaming down her face.  She started talking about how hard this must be for me and John, how it's never ending and so frustrating.  She said she prays for our whole family everyday.  I was flabbergasted, but soooooo touched.  There is noone else in our lives who sees our day to day more closely than this woman, noone else who witnesses the struggles we go through to the same extent.  To see her tears actually comforted me.  She gets it, she feels it, she loves our family.  I will be very sad when she moves away.

Monday, 10 December 2012

A Quote to Brighten Your Day

So Jack was just playing with a helicopter that Nate received for his birthday yesterday, and he had it land on our window ledge in front of the Melissa and Doug toy nativity set that we have for the boys.  He said "mom, the helicopter is on a search and rescue mission because he received a call that the little lord Jesus had a boo boo." 

We are all so reverent with regard to our religion and Jesus when it comes to the holidays.  I love that Jack keeps bringing Jesus "back down to earth" for us this holiday season.  Between, "hey mom, when is he coming back", to "I, baby Jesus, would like some hot cocoa", he's making me feel more like Jesus really was just a regular guy.  I guess he did say let the little children come to me- he wanted to be approachable and clearly Jack is not intimidated!  Happy Monday

Sunday, 9 December 2012

I Guess It Was Inevitable

Today was Nate's 3rd birthday.  I'll be honest, last year, our family was in such a state that I literally cancelled Nate's 2nd birthday party, made it close family only.  So I guess I felt the need to make up for that on some level, even though I know he's not really aware that he missed anything.  At the same time, he would not enjoy a "big" party- he would be overwhelmed, overstimulated, and would be likely to have a meltdown.  I was a bit disappointed that several of our friends were not able to make it initially, but in the end I think it was for the best.  I would say that Nate was a bit overstimulated even with a smaller party.


I was finally able to pinpoint something that Nate really loves this year- so I took the idea and ran with it.  Really simple- balloons!  They were EVERYWHERE.  And Nate noticed right away this morning- I started hanging these balloon banners that I made and his eyes got so big. I really do feel like he knew that today was "about him", although he doesn't understand the whole birthday concept.  One thing that made me really proud this morning- big brother Jack gave Nate his gift, helped him open it, told him happy birthday and hugged him.  And Nate noticed the gift- a duck and goose book and stuffed duck and goose.  I have been working with Jack to help him understand a bit better the idea that he can give, he is not always going to be the receiver.  It's been a tough concept for him. 
The party went well, great group of people, all of whom really care about Natey and understand where he "is".  No surprised looks when he ran back and forth, collapsed on the floor, or stood on his head.  He did sneak to the treat table and snatch some stuff which tickled me- that meant he was paying attention to his surroundings.  I even took one of my first "risks" since the boys were diagnosed.  Nate has a little "buddy" from his old ABA class- which means they occasionally acknowledged each other's presence, and his mom and I have been in that Friday speech class together.  So I invited their family, which was a huge leap of faith for me.  Letting someone new into our lives- and I am so glad that I did.  They are new to the area, and have a special needs child, which must be a lonely place to be.  Such a nice family, and hopefully, some new friends.  Friends that understand fully what it's like to be raising our kids.  Jack did pretty well, other than a minor argument with a little girl over the Christmas tree lights- did great during the birthday song, as I had "tasked" him with helping Nate blow his candles out- not even a hint of a meltdown.  We did a simple craft, played with balloons (including those "punch" balloons- remember them?), and had cake.  It was a good time. 





















and why wouldn't Jack wear his airplane tie???




So what was inevitable on what I would consider a good day?  Mommy's feelings, that's what.  I feel guilty about it.  I am happy that everyone had a good time, that there were no issues.  But it is milestones like today that make me realize what a huge amount of work we have to do.  When I see Nate next to his neurotypical peers, it's almost too much.  Jack may seem a bit quirky to me (most people don't even notice) in groups, but Nate just doesn't even live in the same neighborhood.  He spent about 80% of the party playing with ribbon that was used to tie up the balloons.  And he ate.  He acknowledged his little friend a few times and sat at the table with the other kids.  He even said a few phrases.  Of course he also showed off his new skill of knocking over our furniture- kid is strong.  I managed to smile the whole way through the party. 

After everyone left, we tried to sit down with my parents to have Nate open a gift or two.  He had ZERO interest.  Less than zero- he was annoyed by our intrusion.  He wanted the ribbon he had been playing with.  My parents are very good sports, and understand the situation, but it hurts to watch it.  I mean, what would a typical three year old do with a pile of presents?  Rip into them!  We tried to open about 4 gifts today- the only thing he played with was this stuffed mouse that came with one of his toys- it has a long dangly tail so he could swing it around.  I did it.  I broke down.  I left the room, and I made it until everyone, even my parents, had left.  I had a good cry.  I am proud that he is three.  I am proud of how hard he has worked.  But I am sad.  And it's not going to go away.  It's so hard to watch him in his own little world in these circumstances, and feel so helpless to get through to him, to help him enjoy things that other children his age would adore.  He did not miss out today, not for him.  He enjoyed all of his day.  But as his mommy, I wish, well so many things, but most of all, today I wish he could have blown out his own candles and enjoyed his presents. 

Thursday, 6 December 2012

Hot Dog

I was SO looking forward to today- frankly it was to be the only "normal" day this week, aka, both boys in school, no appointments, well at least not until 5pm.  I can't deny that I am really enjoying having the mornings alone in the house.  I haven't been alone in the house since, it feels like ever.  I drink coffee, I do my job, I blow up balloons between calls, you know the usual.  Starting next week I imagine I will be wrapping gifts during conference calls.  That would be frowned upon in an office :-).  So productive was I that I had 6 loaves of pumpkin chocolate chip bread out of the oven by 7:30 this morning. 

So imagine my dismay when I found my dog getting sick all over the house.  Now, I knew that Riley had ingested chocolate yesterday- he found one of the bags of chocolate chips in the grocery bag, in my diaper bag, on top of my desk and went to town.  He has done this before, no ill effects.  I have been told it's really baker's chocolate that you should worry about.  Not so.  White chocolate and milk chocolate are less worrisome, but semi-sweet can apparently be dangerous as well.  He was sick several times and I was hoping he was getting it all out of his system, but something was nagging at me. He was drinking water like crazy, pacing, and seemed really anxious.  Now he's always hyper, but there's a difference between hyper and anxious.  John came home to take him to the vet, since I had to get the boys from their respective buses.  When he returned from the vet he was alone.  They kept Riley for IV fluids and medications.  His heart rate on arrival was 190- that explains the anxiety.  He ingested enough to make him really sick- the next step after arrhythmias is seizures.  So glad we took him in.  Even though we are $600 lighter than we were this morning. :-(. 

Jack and Riley don't really get along under normal circumstances.  Riley is too erratic and he makes Jack nervous.  But when we told Jack today that Riley had to go to the doctor for a "test" he seemed really concerned.  He actually petted him when he got home tonight.  Riley drives me NUTS.  I can't leave the kids' food out anywhere, even on the counter, or on top of the toaster oven.  He has mad skills.  He can open the cabinet where we keep the trash and make a huge mess.  He even goes after dirty diapers (sorry but it's true).  He wakes the kids, scares the neighbors, and terrifies the UPS man who is always saying he looks like he's going to "come through the window."  All of that aside, today shook me up a little.  Riley was our first baby and the thought of losing him when he is only 8 really got to me.  Feeling very thankful that he's ok.  So now, everyone go pet your dog.  And put your chocolate somewhere very safe!

Tuesday, 4 December 2012

My Little Natey

Well, I guess that as of this Sunday I don't have a baby anymore :(.  For me, three has always been that cut-off.  Granted it feels like Nate has been a baby much longer than Jack was, I am sure that much of that is due to the language delays.  Just wanted to write a bit about his birth now, as I will be too busy this weekend with his little party.  Already I have nearly asphyxiated myself from blowing up so many balloons- you will see why later on in the pictures. 

Really all I would need to do to explain everything about Nathan is say, take Jack's story and flip it on it's head.  That's Nathan- from pregnancy, to birth, to infancy, that's Nathan. 

Whereas Jack was a "surprise", Nathan was the product of a 9 month waiting game while trying to conceive.  I was sick as a dog with Nate, I think partly because I was so busy chasing around a two year old.  Other than that, the pregnancy went pretty smoothly.  If you hate birth stories, you need to skip the next couple of paragraphs.  Well really, the rest of this post.

I was very dissatisfied with how Jack's birth went- enough so that I changed doctors before I became pregnant with Nathan. This practice was great, very supportive.  I really wanted to try for a drug free delivery, even after the pain of the first time around.  I am a pretty anxious girl to begin with, so this was a tall order.  I know all women hear that childbirth pain is partially caused by, or made worse by, fear.  We all scoff at this, and claim that this theory was brought forth by a man.  I decided to work with it though, knowing myself as well as I do, and enrolled in a hypnobirthing class.  Oh John....poor poor John.  There we were with all of these granola-ish parents lying on the floor, doing visualization.....that's love right there.  When Nate turned breech it was the most lively discussion of the whole class- every suggestion you could think of was flying at me from every direction.  Conveniently, we had an acupuncturist in our class and she brought me a remedy that I was supposed to burn by my foot (yep), but by the time she got it to me Nathan had turned.  I think he was scared, haha.  The class was very relaxing.   Even John admitted to having no idea how much time had passed during these meditations.  I was skeptical though- how was I to concentrate on this cd and my breathing through so much pain?  I BEGGED for drugs the first time around. 

I was convinced, had not one doubt, that Nathan was coming early.  He was due on New Year's Day.  Drove my family crazy with this- even remember having an argument with my mom because I wanted my parents to come for Christmas.  She was still working and said she could either do that or come when the baby was born.  I said she didn't need to choose.  I was that sure.  Don't think my mom doubts me anymore. 

I was so sure that by December 8th I had all of the christmas shopping done, all of the presents wrapped.  I baked 4 batches of cookies that day as well- the nurses benefitted from that one.  So anyhow, there I am, and I am NOT making this up, wrapping the last Christmas gift, with the last batch of cookies in the oven, I stand up, and pop.  My water broke!  That never happened with Jack, at least not until right before he was born.  I kinda freaked out to be honest.  John was upstairs lying down with Jack while he was falling asleep, so I decided to call the doctor first, figured we had several hours to come in since I wasn't really having contractions yet.  But no, she wanted us there within an hour- I technically wasn't full term yet- I think I was 2 or 3 days shy of it.  So I arranged for someone to come watch Jack and then went upstairs to grab John.  He was completely asleep!  It takes awhile to wake him up- and I wasn't able to do it without waking Jack too, since he the lightest sleeper in the world.  I remember looking at Jack and having this overwhelmingly bittersweet feeling.  This boy had no idea how much his little world was about to be rocked, and this was the last time I would see him and be just his mommy. 

We headed to the hospita and were taken to triage.  The nurse swore up and down she wasn't seeing any amniotic fluid.  I wanted to sit up and scream "oh no bleep!  I don't come to the hospital unless it's time to come to the hospital.  I am a nurse and I am telling you- MY. WATER. BROKE."  Luckily, I held it together, and when the OB examined me she said that Nate's head had just come down really fast so I wasn't leaking fluid anymore, but my water was broken.  So there, ha.  We were admitted, I was I think 3cm, not much doing, just minor contractions.  That changed VERY quickly.  I popped my cd in and my headphones on and tried to relax.  To my surprise, I really did drift off, really was able to concentrate on my breathing, was in "the zone".  Kinda freaked John out.  In between listening we would walk, and walk, and walk.  I would keep the breathing going throughout, and it really worked for me.  The best thing I can think of to compare it to is the feeling you get when you are in good shape and in the middle of a long run- spacey and focused at the same time.  And unable to feel your legs :).  They checked me after a few hours and I was 9 centimeters!  I got all cocky- almost there, this is nothing.  HA.  I was 9 cm for 5 hours.  Let me tell you, hypnobirthing can only get you so far!  After 5 hours of that, when I hit transition I thought I would literally kill my husband.  I mean, it was like a scene out of a movie.  I asked for ice chips, John brought the ice chips, and I asked him why the hell he kept putting ice chips in my face and he said because you asked for them.  I screamed at him to get away.  Good times.  The baby's head was not coming down far enough- turns out this is the one way in which Nate was like big brother- he turned sideways in the birth canal.  I will never forget, about an hour before I delivered, the OB who had been with us all night went off duty.  She had been staring at me for much of the night saying things like "you can't be 9cm" because I was so calm.  When she left, she looked at me and said "Jenny, you don't need any pitocin, you don't need an epidural, and you are going to do this with no help."  All of the things that had been "done to me" with Jack she was telling me that I didn't need.  It was inspiring.  I'll cut to the chase and say that she was right- I needed none of that.  I did it myself.

At first I thought there was something wrong- there were so many staff in our room!  Turns out that the nurses, social workers, and birth coaches all need to see at least one drug free delivery a year to stay current.  And it was December.  Well hello there....everyone.  And to top it off, this was also the day that the computerized order and medication system went live- so everyone was trying to figure that out too.  Entertainment. 

I'm not gonna lie- my OB cried at my delivery.  This was not for a good reason.  I had to be seen in her office every 4 weeks for 4 months.  It was rough- but worth it.  In the end anyway.  The nice things about that delivery- I got up right away, I could take care of my baby right away.  I had pain, but I felt in control of my own body.  I never even needed an IV.  And Nate was amazing (still is of course).  He fed right away, he was alert, he was quiet.  Just a joy.

John had to go home that night to be with Jack as we didn't have anyone who could stay with him.  So my friend Joann came and spent the evening with Nate and me.  It was one of the most peaceful nights of my life.  He ate right away every time, when he fell asleep I put him in the little bassinet and he just stayed there.  It was amazing! 

I will never forget the births of either of my boys, but I have to be honest.  Nate's was really special, almost spiritual in some ways.  One of the best, most empowering experiences of my life, and look what we got!!! 


Saturday, 1 December 2012

8 Years

I feel the need to pay tribute to my marriage for a few minutes tonight, so please indulge me.  Our 8th anniversary is on December 3rd and this is likely the most meaningful anniversary thus far in our marriage.  The survival of our marriage is due to hard work on both sides and a lot of love and committment.  I love my husband more today than I did on our wedding day, and this is made much more significant by all of the challenges we have faced over the past few years.

Do you think anyone really knows what they are saying when they make their wedding vows?  I mean, we all know, but do we really KNOW?  I don't think that we do- and frankly many people would choose to forgo marriage if they realized what they were signing up for.  If I were able to go back in my life, John would have been scrutinized so much more carefully before I said yes.  Would I still say yes?  Without question.  But I would have been watching every move- analyzing every familial relationship, watching his cleaning habits (haha), etc with much more interest.  Maybe that's why we NEED to go into marriage a bit naive.  We would all be scared away if we knew all of our partner's little idiosyncrasies. 

Our wedding day was definitely one of the best days of my life.  I can no longer say THE best after the births of our children, but I will say it's a three way tie.  The things I remember about that day now are much different than what I was focused on then.  Yes I remember that John looked very handsome, and I remember all of the details that I worked so hard to get "just right".  I remember that the wedding band played our first dance at a MUCH faster tempo than how we had practiced it- was a bit of a challenge.  We made it through :). I remember our friends, and I remember feeling on top of the world.  I remember feeling beautiful.

The things that mean the most to me from that day?  My family, and John's family.  John's granddaddy and grandmama making their way up the aisle to do a reading after John's granddaddy had been in the E.R. the night before.  Much of John's family making it to the wedding the night before the "all important" Army-Navy game the next day.  Most of my family making the journey from all over the country to be there for us.  My aunt and uncle reuniting for the first time in a social situation since their divorce, with their new respective spouses, in order to support us.  Learning how much my new mother in law loved little children after watching her with her nephew Nicholas- and also how much little children love her.  That has continued in her relationship with Jack.   I remember all of the incredibly hard work that my sister, my brother in law, and their children did in order to be able to participate in the wedding.  I appreciate it SO MUCH MORE now.  Phew we asked a lot of you, and you sure delivered.  Same goes for Kate, my sister and maid of honor, who was 16!  She did an amazing job.  The feelings of warmth and love, of everyone putting aside their own lives and conflicts in order to celebrate our marriage- I will never forget that.  It was a true joining of families, and it was a wonderful way to start our new family.

And that's where we are now.  After this past year, we have really developed into our own "family unit".  We make our own decisions for the boys and we do what's best for us, not everyone else.  We have stopped trying to make it to everyone's house for the holidays- one house is enough, and even that is sometimes too much for the boys.  We used to push ourselves to participate in everything for both of our families, to the point where it literally broke us right around the time of the boys' diagnoses- and last Christmas.  We were trying to continue everything as though nothing had changed- but it had- drastically.  So we had to change too.    We have stopped trying to make others happy ahead of ourselves- we have to find our happiness first.  We have to find peace.  And we are doing just that.  Our children, and our marriage have become our first priorities.  And this is how it should be.  The difference in our family is dramatic with these changes.  I know that we will eventually find a way to work more social and family events into our lives, but for now, we choose them very carefully.  No tension, no crazy crowded venues, no sensory overload if possible.  Our quality of life, and especially that of the boys, really improved with these changes.  I guess what I'm trying to say is that we chose US.  We chose our family.  And we chose right.

I have learned so much this year.  About my relationship and relationships in general.  I try my best to avoid judging other people's relationships.  Chances are, whatever I am thinking, I am wrong.  So many couples who "seem" happy end up splitting and others who are really struggling may really truly love each other and be able to work it out.  And no one knows what is going on in a relationship except the two people in it.  Things aren't always what they seem.  John and I will bicker until the day we die.  That's how I want it- I want someone who challenges me and I know he wants the same.  Our interactions keep life interesting (because otherwise it's just soooo boring right?).  I have seen many "old married" couples who have this constant banter going on- so clearly we aren't alone in this.  I think some people assume arguing is a sign of unhappiness- if John and I stopped I would be worried- because we wouldn't be communicating anymore.

I have mentioned that we had family portraits done about a month ago.  While we were there, we asked our photographer Heather to do a few of just John and I, since we haven't done that really since our wedding day.  Thought I would share a few today. 



 





Happy Anniversary Honey!  We've worked so hard for this and I'm so happy that we did. 
 I love you

Friday, 30 November 2012

Jack and Baby Jesus

For my family, and most of my friends, this title may bring back memories, maybe even illicit some giggles.  I have many many serious things I could be updating you on right now- IEP meetings called, letters written to the school by therapists and physicians, new medications, more shots, first weeks at school, but tonight I choose funny.

After a trying week, I decided that tonight would be the night we would put up Christmas decorations.  We have Nate's birthday party next weekend, so we needed to get it done anyway.  We had some drama with our tree, ended up with a new artificial one, as getting a real tree is not an option in your house when your three year old is obsessed with pine needles and twirling them.  We would have no tree left in a week's time.  Anyway, so there I am getting out the decorations, including my nativity set, which I adore.  Jack started talking about it right away, about the angel Gabriel, about Jesus coming again, I am really impressed by all that he has absorbed.  Then it happened.  He started in again.  Anyone remember last year?  For those of you who only know me through the blog, this is a bit awkward.

My five year old son, with Asperger's, likes to pretend he's baby Jesus.  Sweet in some ways right?  Well the problem with this situation is that as with all of his  interests/obsessions, Jack takes this to the extreme.  Remember how when he is being a baby airplane I can call him nothing else at any time?  The exact same way with baby Jesus.  As in "mommy, tell me, baby Jesus, that it's time for a snack".  Or, "I'm baby Jesus my best friend is Santa".  Or "tell me, baby Jesus, stop knocking the ornaments off the tree".  I am worried that he will continue with this and that it will progress to the level that it did last year.  I found it really really difficult last winter to tell Jack "baby Jesus, go make a poop or we're not going to the movie."  However, he would respond to nothing else.  Or, "baby Jesus, stop saying bad words, Santa is watching".  Or "baby Jesus, it's time to go upstairs to your room, you're in time out.".  I mean I was raised Catholic- it just feels wrong to tell baby Jesus what to do!!!!  So far it's been pretty mild, I've only really had to serve baby Jesus hot cocoa while he decorated the tree.  Of course John LOVES that Jack is baby Jesus, because that makes him baby Jesus' dad.  Sigh.  Sorry honey, it doesn't work that way. 

Welcome to our holiday season :-)

Tuesday, 27 November 2012

Nagging Thoughts

I wish I could say that this post has a clear purpose, but it doesn't.  I am feeling melancholy today with no real reason.  Things are going well, Nate had a better day at school today and while they won't get the bus straightened out this week so I will need to continue to pick him up in the afternoons, everything else is going smoothly.  I am giving Jack his methylcobalamin shots while he is sleeping and that is going well.  He successfully swallowed his first pill yesterday.  All good stuff.  And even more so- Nate is about to be 3, John and I are about to celebrate our 8 year wedding anniversary, which we are both VERY proud of, and Christmas is coming.  What on earth is my problem?

I think that much of my mood lies in the fact that I am chronically overwhelmed.  Sometimes I just wish for a little bit more stability.  I wish that I wasn't constantly analyzing the boys' supplement doses and schedules and trying to find new schemes to get them to take them all.  I wish for fewer meetings, doctor appointments, etc.  And I know my boys are physically healthy and I am grateful for that- but that does not mean this is easy.

Of course the other piece of this puzzle, in my mind, is remembering where we were last year at this time.  It's very painful for both of us, and for our families.  It was wonderful to be able to, for the most part, rewrite our Thanksgiving experience this year after a very negative one last year.  And I know we will do the same for our anniversary, Nate's birthday, and Christmas and New Year's.  But the memories still hang around there in the back of my mind.  Almost like a trauma.  So while I am so thankful for what I now have, a happy family, I am also mindful of what I almost lost.  And it gets to me.  I never want to live through something like that again.

Monday, 26 November 2012

Rough First Day


I thought it would be a little bus....but it was BIG.  Too big for my almost 3 yr old.  There were safety "harnesses" inside, just not what I was expecting.  Today was Nate's first day at his new school.  He liked the bus.  And that was all he liked.  We'll get there, just more adjustments. 

Nate, blissfully unaware that I was about the throw him under the bus- sorry I couldn't resist.











I set myself up to have a crappy day although I really didn't mean to.  I had scheduled myself to volunteer in Jack's classroom today long before I knew that Nate would be switching schools today too.  And I didn't want to back out at the last minute.  So after I put my precious cargo on the bus and had a good cry, I went in to Jack's school and played "What's Gnu" with the kids.  It was kind of fun.  I finished up around 11:30, got home around 11:40 and got a call from Nate's teacher at about 11:45.  She said that somehow the transportation people had only gotten a request for Nate to be taken to school, not home.  I guess they thought he would hitch it?  So he was sitting there all by himself with the teacher.  I went to go get him and the teacher let me know that he cried most of the morning and only calmed down during snack- that's my boy- we love our food.  I know it will get better- this was just not how I wanted his first day to go.  Did I mention that the sitter wasn't able to come today?  So Nate and I made calls together all afternoon.  Some days I wonder what the heck I think I'm doing.  Today was one of those days- just felt incompetent all around.  The best part was when I was driving to get Nate and the all Christmas radio station started playing "Run Run Rudolph."  Perfectly fit the theme of the day!

Saturday, 24 November 2012

Moved to Tears

Thanksgiving.  What a day.  I haven't been able to post because I have been busy Black Friday shopping- anyone else get a Wii for $12???  Thank you Johns Hopkins Hospital for those Target gift cards!  I would not, however, recommend going to Wal-Mart on Thanksgiving night (or really ever).  Police backup was present, and they were needed.  When I heard a policeman say "the first person who touches me is getting arrested"  I decided it was time to hit the road.  Sheesh

As I mentioned before, both of my sisters came for Thanksgiving this year, as well as my brother in law and their kids.  What a great day!  Jack first stalked his older cousin Will (who was incredibly patient by the way) but eventually found his way to his cousin Graeme who is only a year older than him.  They played baby lions for quite a long time and had a blast.  Both of my boys sat at the kids' table for the whole meal, granted we distracted Nate with gluten and dairy free rolls, which are apparently heaven.  It's nice to see that the kids can go quite awhile without seeing each other and pick up right where they left off.  My sister lives in Indiana so visits really take some doing.  That's just how it was with my cousins growing up and we can launch right in to our banter when we see each other even now.  

The "star" of the day was my little Nathan.  We are almost at a week into the tripled dose of methylcobalamin now, and let's just put it this way, two of his grandparents were moved to tears on Thanksgiving.  He is much more assertive in asking for what he needs these days.  While I was standing talking to my mother in law, who also came for a visit, Nathan walked over to me, pulled on my leg and said "come up" clear as day.  Instant tears in my mother in law's eyes.  And then when we were getting ready to leave Nate turned to me and said "I go bye bye".  It was my dad's turn.  He actually confessed that he had never heard Nathan say any words.  I know that I am always telling people that he is using new words, improving, making more eye contact, etc, but I guess that seeing really is believing.  And I am so glad that they both got that chance.  Because words coming out of Nathan's mouth are such a miracle- every time I hear them, I get teary too.  It takes so much work for him to use them, and I firmly believe that the methylcobalamin is really really helping.  I think the rest of our family now agrees!  What an awesome day.