Tuesday, 30 December 2014

We Made It Through Christmas

We survived Christmas.  At home.  That is basically the best I can say.  This is the first time we have had Christmas at home in 3 yrs, since the year the boys were diagnosed.   We have been leaving and going to the Outer Banks- it was a good way to just change the setting, reduce stimulation for all of us, and escape the bad memories.  We decided we might be ready to stay home this year, see our family, try to create new memories.
Here is a flashback to two years ago:
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 no one 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.  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". 

Long story short, we weren’t ready to stay home.  Or at least, my husband and I weren’t.  It’s amazing how being in a setting where trauma has occurred can affect you.  Nothing bad happened, but I had extreme anxiety and depression throughout December.  It was almost immobilizing. 
I guess the positive is that nothing happened.  We made it through the day with no adverse events.  Other than the typical autism meltdowns, which would have happened no matter where we were.  I was in tears for quite a bit of the morning and just very shaky, went upstairs to try to calm down, and John followed me up the stairs and handed me a mimosa.  I am NOT a drinker.  But there are certain times in life--- well, let’s just say it helped.  It made the day more tolerable.   And I love him for knowing what I needed at that moment. 
We cooked a low key dinner, both sets of grandparents visited briefly, we played with new toys, and generally just spent quality time together.  I am not ready to entertain again- I am not sure I ever will be.  And I am not sure that we will try to stay home again next year.  I had no idea that I/we would feel this badly.  BUT we made it.  The boys had a good day- we had a delicious meal, and I know that all the grandparents were very happy to see the kids on Christmas day.  We still kept boundaries intact to protect our little bubble, but we didn’t have to shut everyone out to do it.  I guess we call that progress. 



Thursday, 18 December 2014

Overload!

Hi my name is Jenny, and it's been over a month since my last blog (cue:  "hi Jenny")  I have no idea how to get you all caught up especially because the reason I am so very far behind is that we have been so super busy.  So, I am going to use some pictures and videos to do the job for me.  Here are the highlights:
Thanksgiving- all the cousins on my side of the family together at my parent's house, Baby Cole (my amazing godson) had his first Thanksgiving

Aunt Sarah got to meet baby Cole and none of us ever saw him again lol



Jack and cousin Graeme had a blast playing!


Then this happened:  our 10 yr anniversary hip hip hooray

along with these beautiful flowers from my awesome hubby


This, however, did not happen, because Nathan got his first fever in nearly a year the day before we were supposed to leave:

But it WILL happen, oh it will!  Our sanity depends on it!


Then this did happen, Nate's 5th birthday
baby Nate



we love Mickey this year!

We all looked at the same time!

And by far, most importantly, this happened!!!!





Today this happened- Nate's school holiday party


He did the motions with the rest of the class during a book his teacher read.  His mommy cried like a baby while the aide surreptitiously forked over the tissues.  Then he stole Chick Fil A nuggets with gluten in them from the food tray after mommy spent approximately $25 buying gluten free cupcakes for the class (since parents are no longer allowed to bake).  The end!

Thursday, 6 November 2014

Why Moms Cry At IEP Meetings

I am going to try to approach this as delicately as I can.  Whatever never mind.  So today was Nate’s IEP meeting.  You know, the one before the BIG one in March (kindergarten placement)  Tensions are high- well for me anyway.  I cried at least 3 times during today’s meeting.  I cried in the parking lot before and after.  I cried this afternoon.  And once again, nothing has changed- I mean he’s continuing to very slowly progress.  He’s showing some “positive signs” of progress.  Blah, blah, blah.   We are moving “away from academics”, to the more practical, social and communication skills- which is what he needs, but it’s sad, and it’s hard.  His goals these days sound very similar to his goals when he was 2- he does a better job of actually achieving them, but it’s still just tough to swallow.   I was speaking with his teacher, who I adore, at the entrance of the school after the meeting for a while and started crying AGAIN.  And she asked “why the tears? He is doing great!”  But I just couldn’t get on board today.  So I just said, I just love him so much, and I’m scared.  She said she loves him too.  And I know that she does.  But in that moment I just wanted to scream, you don’t understand!

It’s much easier to view the little progresses on a day to day basis, and focus on those and not the long term picture when you go home at night.  There, I said it.  We are surrounded by lots of supportive people, who try to empathize with our situation.  But they can’t- not truly.  Because they get to go home.  If someone asks, who is responsible for this child, the answer is me (and my hubby).  At the end of the day, if Nate can’t communicate effectively or function independently, it is my responsibility.  Both John and I have already been mentally preparing ourselves to be lifetime caregivers, to have a trust set up, to have extremely detailed plans in case we both pass away.  Here’s a story to make you cry- one day I was talking to my younger sister about this- she has a new baby, he’s 4 months old.  She said to me “I want them”.  I didn’t ask, didn’t broach the subject, she asked for them.  OK, sorry, that just popped into my head and makes me sob every stinking time I think about it.  What an amazing woman.

Anyway, so while I work my very hardest to focus on the little things- like Nate’s trick or treating success last week, or the fact that he is showing some interest in some toys FINALLY, there are days, like IEP day, when I just can’t do it.  On those days, I find myself thinking about 5 years from now, 10 years from now, and even further into the future.  And I can’t revel in the little things.  Well, I take that back, I can, for a moment, but my focus doesn’t stay there.  I think about the IEP meetings of the past, and the ones to come, the positive changes, and the areas where there is a real lack of progress.  And it scares the crap out of me every single time. 

Add in another IEP, another set of interventions, another set of special educators just casually emailing or sending new suggestions, apps, tools, progress reports, etc, etc, etc, and some days--- well it just flat out sucks.  Today is a sucky day for me emotionally.  And we haven’t even done Jack’s math homework yet J

Do I have some words of wisdom to wrap up my whiny day?  Well kind of.  Grab your other autism families, grab them and hold on- you need them, and they need you.  Appreciate all the love that the family members, teachers and therapists have for your kids, even if it is slightly jaded by the fact that they only deal with behaviors for short periods of time and then they move on with their lives.  You need them to love your kids, you need them to be able to go home at night and recharge- because then they will continue to fight alongside you for your kiddos.  The trick--- and it is a trick- is to recognize that you will never get to do this yourself.   But that just like them, you too need to find opportunities for respite (although you clearly won’t get them as frequently haha).  This is something my husband and I are working on- dating again, even if it’s dinner in an hour after an appointment, or an autism conference, or finally, finally going away for fun for the first time since we became parents for our 10 year anniversary.   The burn out rate is high among special educators and therapists.  What does that say for OUR burn out rate??  It says, we damned well better take every single break we can get- that’s what it says.  It's not being selfish, it's refueling.  So we can come back swinging. 


But for tonight- we’re skipping baths, and I am writing Jack’s math answers instead of making him practice his fine motor skills.  And somewhere tomorrow, his teacher will see this and maybe think that I was being lazy.  Nope, not lazy- just prioritizing my sanity today, that’s all.

Monday, 3 November 2014

A Gift

I am not someone who believes that my children are just “differently abled”.  Maybe someday, if they reach a point where I don’t watch them continuously struggle to live in this world of ours, I will have a different perspective, but right now, for the most part I see confusion, fear, anger and frustration.  And I worry.  And worry.  And worry some more, about their futures.  Every single thing we do, every single day is challenging.  Take getting both boys in the car to take Nate to school in the morning- the minute we turn on the car, Jack starts in with, mom, you will turn the radio off when you take Nate in right?  (he sits in the car for about 2 minutes each morning while I take Nate in- don’t judge, it’s a private safe parking lot).  The one time I forgot to turn the radio off, he rolled down the window and screamed like a maniac until I came out to turn off the radio- he even liked the song, it was just the concept that the next song might bother him.  If there is traffic, he screams and says he wants me to drive through the cars.  If I turn to go a different way to avoid traffic, Nate screams because I have deviated from the routine.  So I am saying, little things in life are a big deal for us- if Jack could finally master buckling his seatbelt I might bust out into a chorus of Hallelujah!  No, seriously.

So when we face a week like last week- school parties, social events, trick or treating…..it can look pretty overwhelming to say the least.  Jack is somewhat used to the routine these days- he had his issues with anxiety- he cried if I moved more than a step away from him at the Cisco Center party because he was afraid I was going to leave him there (since he stays there sometimes), he yelled an awful lot during trick or treating (inappropriate yelling- like I don’t want that candy, give me two, or if they’re not home I’ll shoot).  But he made it- we went with a largish group of friends and family and he did a pretty good job for him.
Halloween with Nathan in the past has been hellish.  His first Halloween was fine (other than another upper respiratory infection and a considerable number of nebs that day).  



The next year was just….awful.  I remember my mother in law turning to me at one point and asking, is he ever happy?  That is kind of seared into my memory mainly because it was one of the first times I realized how miserable he was- but only when we took him out of his usual environment.  He cried the entire time, and one of us had to bring him home after a few houses.  He had always been my "laid back, easy going" kiddo.  This happened right after his initial diagnosis- it was a whole new ballgame.

The next year I didn’t even attempt a costume- I got him an “owl” winter hat and bought a cape on etsy, the least invasive thing I could think of.  You can see, this wasn’t a big hit either.  Not sure how far he made it that year- kinda blocked that one out.





Last year, what can I say?  The boy LOVED his costume.  Did he trick or treat?  No.  But he DID sit in his stroller and tolerate the other kids trick or treating.  The year before, every time the stroller stopped he went into a meltdown.  Last year, he pretty much hung out.  He definitely had no concept of what we were doing, but he was ok with it.



This year was amazing!  Nathan was an active participant in all things Halloween.  It was like a two week extravaganza of tangible progress.  Holidays often make progress seem more obvious, since it is easier to recall what Nate was doing on that exact date last year, more so than just any other day. 

He picked a pumpkin at the pumpkin patch, he petted the animals at the petting zoo.  When I showed up at his school (I planned his school party) he was nothing but happy to see me- content to stay and participate in class, no meltdowns.  Halloween was definitely the highlight though.  After school, we first went to trunk-or treat at Cisco Center, which if you have never seen it- cars line up with their trunks facing the same way, they decorate their trunks and hand out treats to the kids as they walk from car to car.  Nate was stopping with Jack at each car- next I looked and he was choosing an item independently.   I found something with Mickey Mouse on it, and he was super happy.  He finished that, participated in the party inside (actually did better than his big brother), and then we went home to get ready for trick or treating.  I brought the stroller- I had no idea what to expect from him this year, but if I have learned one thing in the past 4 years, it’s that it is much better to prepare for the meltdown and have a way to “contain” him, than to wing it and hope for the best.  Kind of like taking an umbrella on a cloudy day.  And he did use the stroller once he was tired.  But first he trick or treated with the other kids for a solid hour.  Now, either mommy or daddy held his hand, and walked to the door with him, and he didn’t say trick or treat (although I SWEAR he tried a few times), but he did stop at each door, he did physically reach and pick a treat each time, and he did put it in his bag.  And he would say bye bye (when I told him to).  And me? I spent the entire evening in tears, and probably annoying the crap out of all of our neighbors, friends, and Nate’s grandparents .  “Did you see that??  He did it again!  I can’t believe it!”.  I almost can’t stand it it makes me so happy.  He was calm, he was engaged, and he was interested in what was going on.  This is not a small thing- this is a huge thing.  It was amazing, and one of the best days I can remember in a long time. 

So while I can’t say at this point in my boys’ lives that I consider autism “a gift”, as some other parents express, I can say that Friday WAS a gift, and it was one that I wouldn’t have appreciated nearly as much if autism was not a part of our lives





Tuesday, 14 October 2014

Autism Awareness And Assistance In Action- You Can Help- Here's How!

This weekend is a very special event for the local community around Severna Park/Annapolis, MD.  This weekend is an event that supports one of my favorite places on earth and I am super passionate about making sure the word is spread and that as many people attend as possible.  This weekend is the Cisco Center Family Fun Day- it is Saturday Oct 18th from 11-3.  It is going to be a blast.  But more importantly, it is going to raise money for the center.  Which is always greatly needed.  Why?  Because this is an amazingly generous group of people who do everything in their power to make sure they are able to provide services to special needs families, even special needs families with financial difficulties.  Frankly, this encompasses most of the special needs community.  As state funding is decreased for autism families (we STILL have not heard from LISS), services are getting further out of reach for children who desperately need them.   That’s where our community needs to step in- and it’s super easy!  Just come to Family Fun Day and have fun!



There have been weeks that our family has had to postpone payment- Cisco Center does everything they can to accommodate us.  And I know that many other families are in similar boats.  This has to hurt the center, but they put the families first.  Always.  There are times when I find myself in tears wondering where our next payment will come from- their response?   Nathan always has a spot with us.  I can’t even begin to describe how reassuring these statements are.  My children are everything to me, and my main goal in life is providing them with everything they need to thrive. This center, especially for Nathan, is a necessity.
I posted last Christmas about the effort the staff of Cisco Center make to give our children awesome experiences, and why their program, above others, is so special.  Please read:
You can also check out their site:

So basically, I am begging- if you are local, come out this weekend.  The support is greatly needed, and the recipients, so very deserving. 
Here are some of the fun events for kiddos:

Face painting
Ghost bowling
Punkin chunkin
Ice cream bar
Food
Obstacle Course (sensory friendly- provided by Children at Play)
Bounce House
Raffles
Live Music!- The Matt Kuhn Group & Harbor City Music Company Quartet

There will also be vendor’s there- some offering autism support services, and some for some good old shopping:

Stella and Dot
Turning Point ABA services
Usbourne Books
99 Stitches (custom made weighted blankets)
Jamberry
It Works!
Children at Play OT services- Samantha Offutt
Avergan Foundation
Kinera Foundation
Dance Academy
PATH Intl. Advanced Therapeutic Riding Instructor Maryland Therapeutic Riding, Inc
And others!

There is definitely something for everyone.   Help Cisco Center continue to help families like mine!  Oh, and have a lot of fun doing it!

Thank you and I really hope to see you there!

Tuesday, 7 October 2014

Another Visit to NIH, Another Sleepless Night- Continuing the Aricept Study

It’s been a busy week!  This past Friday was Nate’s one year study visit at NIH.  This was follow up for the trial of aricept that he was on for 6 months- from last October until this past April.  They will continue to follow him through next April.  This meant that we had to go through the full battery of tests…again. All the assessments, 5 paper surveys for me, a two hour interview, physical exam and tests, and the sleep study.  I dread these appointments for weeks.  I just hate them.  The mornings are not so horrible- it’s nice to have some one on one time with Nate- in the car, between tests, at lunch.  I consider it a bit of special time- we both have such jam packed schedules that it’s a rarity to have just mommy and Natey time, so that is nice.  The sleep study?  It’s the bane of my and Nate’s existence at this point- it SUCKS the first time, and the third time?  Yeah, it really sucks.
I think I may have to call our most recent visit the worst one to date.  It started with in insane day at work the day before, getting ready to take the day “off” HA!  I was working on cases after the kids went to bed, and that’s really unusual fortunately.  Just one of those days.
The next morning was nothing short of a circus.  I mean seriously, cue the music.  We actually left just barely in time to get to NIH- those of you who know me personally know that this is unheard of for me- I am chronically early.  It’s just me.  So OF COURSE we hit ridiculous traffic going to DC- it’s always ridiculous but on Friday morning it took me 40 minutes just to go down a ramp to get onto a highway (95 for the locals).  So I called to let the staff know we would be late- this appointment involves approximately 10 people- MD’s, PhDs, child therapists, and research assistants.  So yeah, I felt like crap about that.  Luckily, the DC beltway was better, and I pulled into NIH a mere 15 minutes late- not bad.  Now back at our first visit a year ago, both Nate and I had to bring birth certificates and social security cards and go through preliminary background checks so that we could get long term id’s to get on campus.  If you don’t have a long term id, when you pull onto campus you have to go to a security building, your car is searched, you have to get out of the car, go inside, present your multiple forms of id and go through a metal detector.  Then they will allow you onto campus.  Anyway, I pull up to swipe my id, and it beeps.  Hmmm that’s odd, I try again- beep.  I called the security guard over and he told me that my long term id expired on 9/30/14 (it was October 3rd).  Fanfreakingtastic.  I would be relegated to multiple searches now.  So I had to back out of the entrance (there are separate entrances for guests) and into the other entrance to begin a process that usually takes about 30 minutes. 
When I pulled up, they asked for my driver’s license and social security card- no problem.  Then they asked for Nate’s id.  Well of course I didn’t have it, because he had a long term id to get on campus.  They started to tell me that they couldn’t let us through.  I threw as much of a hissy fit as I was brave enough to throw while surrounded by security, metal detectors, and I am sure video cameras.  I had them call the clinical center to confirm that Nate was in fact the patient and had to come inside.  After they did this, they were extremely solicitous- they scanned me outside so I wouldn’t have to get Nate out of the car- scanned him (which just cracks me up), searched the car, and then provided me with a paper pass to get on campus.  Phew.  The security guard told me to just wait for the car in front of me to pull through and I would be all set.  So we sat, and sat.  After about 5 minutes I put down my window and asked the guard if there was an issue, so he went to check.  Turns out, the car in front of us had broken down!!! You just can’t make this stuff up!  So they moved some cones, had me back up (again) and let me in a different way.  At this point I was laughing like a hyena.
All of that before the actual appointment- not a great sign - but I told myself that all the bad stuff had now already happened so we were all set.
And honestly, the appointment was pretty uneventful.  Just the usual feelings of despair that come with confirming for the fifty thousandth time that your child is in fact profoundly delayed and that thousands of hours of therapy have not, in fact, helped very much.  That pretty well sucks every time, it’s a given.  That being said, Nate was much more communicative with the evaluators- maybe not in the way they were hoping for, but his expressions were killing them (and me)- soooo funny.  They brought me in for one of the evaluations, I was to just sit in the corner and “blend in”.  Nate was wrapped around my legs which made that a tad difficult.  At one point they started calling his name (to see how many times they would have to do it before he turned to them- this is a risky game- I have gotten as high as 40 when he really wants to ignore me) they tried 5 times and then asked me to try.  I called his name once and he whipped his head around.  They tried expressing happiness through their facial expressions (to see if he would share in their enjoyment) and he looked at them like they were on crack, I did the same and had him laughing within seconds.  They pointed at pretend objects in the distance to see if he would follow their fingers, he didn’t.  They asked me to do the same- he did nothing- hey you can’t win them all!  We did our usual 15 minute “play on demand” session in the room while everyone sat outside the two sided mirror and watched.  Just for kicks I brought the book “Brown Bear, Brown Bear” and asked if I could sub it for “I love you through and through”.  I was told that would go against the standard protocol.  OK, that’s fine.  But then I go in the room and they have replaced the boring pots and pans with ones that hiss and making boiling sounds- how fair is THAT?  I bet the kids like those better, just like Nate would have liked my book better.  Oh well.  We ended up staring at the mirror with him yelling jump, and me lifting him up to see himself over and over and over again.  Hey, it was reciprocal interaction. 
After this, we had a break for lunch, then did inpatient registration, then went to the registrar for meal reimbursement and then went to get our new long term ids.  Then we went to his inpatient room so that the research neurologist could come do preliminary tests and a physical exam.  Now, anyone who has ever been admitted to the hospital (or has admitted someone) knows that the process is a flurry of activity- height, weight, vitals, medical history given to a nurse and then the doctor, menu explanations, discussion of the plan of care, and last time we were so lucky as to have the catholic chaplain drop in to discuss the blessings that autism can bring (yes that was sarcasm).  It did seriously happen though- for a good 40 minutes- and you can’t be rude, because it’s the chaplain.  Anyway, by the time the doctor came in to examine Nate he had been poked and prodded a bunch already, and through all of the tests from the morning- he was done.  She tried to listen to his heart and lungs and he repeatedly threw himself on the ground, so I did what I always do at his pediatrician’s office.  I put him on my lap facing me so she could listen on his back.  And he bit my chest- HARD.  This is about the fourth time he has done this to me recently- he has also done it to his dad, his teacher and my mother, and a few staff members at Cisco Center.  Usually it revolves around making him sit on the potty.  Here he was clearly frustrated with all the activity and his lack of control of the situation- but he broke the skin- on my chest – yow!!!

Of course after that happened the doctor was very firm that when we placed the EEG electrodes we would need to put him in the papoose (read:  straight jacket) for safety reasons.  I was in no position to argue since I was bleeding.  We were transferred upstairs to the neuro floor for the lead placement and sleep study.  The lead placement took over an hour as usual and Nate was pretty much hysterical the whole time- hiccupping and everything.  A few times he almost fell asleep.  After the placement he is usually so happy because it is done- but this time he had a complete meltdown- it took a long time to calm him down, but I did, we had dinner and then it was time for bed.  He did great when it came to falling asleep- he fell asleep a little after 8- it lulled me into a false sense of security.  And then he woke up at 9:30pm.  And stayed up- for a long time.  I didn’t look at my watch but figured he fell back asleep at around 1 or 1:30- in the morning the sleep study tech told me it was 3:30. He woke up for the day around 5:30am.  Yeah that sucked.  He just thrashed all night long- it was the darned leg leads again.  When he goes through his sleep/wake cycles and moves around he gets really upset when he feels something on his legs.  I reiterated this to the neurologist on Saturday morning and she assured me that “next time” we can leave those off.

beautiful face :-)


Which brings me to my dilemma- next time.  I just don’t know that it’s worth putting Nate (and me) through all of this again.  I don’t have to decide until next April, so it’s not really a pressing issue- but it is a difficult decision.  Is this benefitting Nate at this point?  It is reassuring to have him assessed by their team on a regular basis, but I don’t feel like they are getting any great data when they don’t get a long period of sleep from him.  And he is out of it for days afterward.  I have to decide if it’s in his best interest to go back- which I think it probably is just for the assessments if nothing else- and if I am willing to go through this all over again.  Honestly that part doesn’t much matter, as it’s just not about me.  The other aspect of the decision is honoring our commitment.  We signed consents when we began the study, and I knew what we were getting ourselves into.  But of course part of the consent states that one can quit the study at any time.  One thing I am not is a quitter- we have given them ¾ of the data they need for the study.  Am I really going to say “nah, never mind” about that last bit of information we signed up to provide?  When I know that they can give us very detailed, independent developmental assessments that can assist with Nathan’s transition to his “kindergarten equivalent” next year?  It’s not likely.  We entered this study for two reasons- first in the hopes that the actual drug in the trial would help him, and second, to provide Nathan access to some of the best qualified professionals in the area.   I think that we need to follow through.  But I am allowed to whine and say I don’t want to, right? 



We made it home.  We slept all of Saturday afternoon, woke up to eat, and went right back to bed.  We survived.  Until next time NIH!

Tuesday, 16 September 2014

When Mommy is Exhausted By Her Third Child, Autism

Yes, I still exist.  It’s been a long time again- I find myself having a hard time mustering up the energy and hutzpah to write lately.  I am tired, emotionally and physically.  I am discouraged.  There is no specific reason; no one incident I can point to- all I can say is that battle fatigue is a very real concept in the world of autism.  The beginning of the school year is especially hard, with all of the back to school activities, trying to get organized, etc.  My husband just changed jobs, which is a wonderful thing, but the change in routine affects all of us.  Especially the boys.

I have been living in this world for about 4 years now- since Jack’s 3 year old preschool year.  That’s not very long, but if I am being honest it feels like an eternity.   More and more lately I find myself wondering how I am going to keep going.  Everything is just so hard.  Name one thing, and I can tell you how autism makes it hard.  I was late getting to the bus today to get Jack, and I was so freaking panicked!  Today he was ok, but under usual circumstances, it would have guaranteed a meltdown.  I am programmed to panic.  To adhere to Jack’s expectations; to prevent the outbursts.  Same goes with Nathan, except that I have to push through many of his meltdowns, as they are over things like sitting on the potty.  Maybe I should just stop caring so much about the meltdowns, stop worrying so much about my kids being distressed- I just find it impossible to do.  Because I love them so much. 

Here’s an example of autism, making something joyful very difficult:

This weekend we went on an ordinary day trip to my sister’s for my godson’s baptism.  Only there is no ordinary for us.  I constantly find myself strategizing on how I can keep the stressors to a minimum, not only to try to keep my kids comfortable to the extent that that is possible, but to “blend in” at family events.  Ha.  And yes this is normal with small children to an extent, but my kids are 7 and almost 5- we should be past this.  So we had a two hour drive each way, a catholic mass to get through, then a baptism ceremony, and then a party.  Many times we would just say no, but this was so important to me- this was mandatory, even for my husband after his first week at a new job with a long commute.  

Navigating these activities with two boys on the spectrum.  There are just landmines everywhere you try to step- things that even after 4 years I cannot anticipate.  I knew that Jack would have a hard time with the music in mass- I didn’t think about the fact that the music would make him sad, make him cry, because he is so reliant on the tone to tell him what emotion is appropriate.  Hymns just sound sad- so he started crying about never having a birthday?  Umm, yeah.   And his volume perception is nonexistent- so everyone hears.  He talked his way through mass, stimmed his way through mass- we had a bitchy lady staring at us (what else is new?)-  Except this lady was the one who did the offering of the gifts, and she was a Eucharistic minister.  I’ve got news for you lady- I’m confident that when Jesus said let the little children come to me, nowhere in there did he say except the ones who are noisy (even though they are not being naughty).  I abhor people who claim to be so strong in their faith, who then turn around and reveal themselves to be the most judgmental peas in the pod.  God loves my children and they had every right to be in that church, stimming and all.   I was so upset about this that it took every ounce of restraint I had to keep me from literally going over to her and letting her know that she was staring rudely at two children with autism, who were doing THEIR very best, and that she should do her best to keep the ogling to a minimum as it was disturbing ME.  I didn’t do it, but what I did do was probably even worse.  I caved to the pressure of the staring, the feeling of sticking out like a sore thumb.  Nate was not crying, not shouting- just making his usual sounds and flapping.  Still, I asked John to take him out.  And in doing so, I set us up for a long, severe meltdown in the process.  I am estimating that it took at least an hour to calm him down after we removed him from the church.  Because daddy took him to the car (totally understandable), and in his little routinized brain, it was time to go home, because that’s what you do.  Only they sat there- and his frustration just built and built, and reached a crescendo when I in a well- meaning gesture went outside to check on them between mass and the baptism.  Because here came mommy and Jack- surely NOW we were leaving?  Poor little boy.  And yet, on this day, when I just wanted to enjoy being my precious nephew’s godmother, I resented the hell out of this (sorry for the language).  Who else has to think it through before they walk to their car like this- of what the consequences could be? 

Family members suggested that I might want to tell the priest that Jack is on the spectrum before the baptism, as his perseveration was reaching a fever pitch at that point, and even the act of me walking away from my 7 year old to go to the baptismal fount was enough to cause a meltdown, but I was a stubborn ahem person and just didn’t want to.  For once I just wanted to pretend- because Jack is high functioning right?  Everyone always tells me that no one would pick him out and say he has autism until they were around him for a while.  Well, when Jack started loudly complaining I finally leaned over to the priest and just whispered “he is on the spectrum”.  The priest said “oh I had figured that one out”.  Fabulous.  Really, the awareness is fabulous.  It still pissed me off at this point.  “Everyone” was wrong- his behaviors do stick out.  By the end of the ceremony he was throwing himself on the ground in despair because the priest said he was “taking the baby to Mary” and Jack assumed he was taking him away forever.  He was sobbing “but I just met him!!!”  My boy is sweet to the core, that I never doubt.

Notice that never in this story am I calling either of the boys “naughty”.  I don’t believe that either of them was intentionally doing any of this to be bad.  I believe they were both overwhelmed by the large amount of change and uncertainty- the very things that so often keep us home.  Some days you just have to walk through it and pray that you will make it out the other side.  I tried to keep my sense of humor throughout the day, and I think the only people I expressed my frustrations to were my mom and John, so that was good. 

But I am just so tired.  And I am so tired of people telling me it will get easier, because they are wrong.  I am tired of people telling me they “don’t even notice” the boys’ behaviors because the bottom line is that autism affects every single move I make every single day.  And I notice their behaviors, and more importantly, their lives are impacted at every turn by the sensory issues they encounter.  No, Nate was not snuggling up on the chair cutely while on the deck like you thought, he was trying to get in position to hump it.  I stopped him, so none of you knew.  And that’s how it always is. 

See, I have nothing nice to say…oh well.

Thursday, 28 August 2014

The Vaccine Controversy: A Middle of the Road Autism Mom's Perspective

So, I guess I should start this by saying, yes I have been following all of the vaccine stuff of the past week, but if you are on my facebook page at all, you already know that.  I think the unfolding of this story is going to be a long, drawn out process, I think there is much more going on than we are aware of.  Besides the video that was released that had recordings of Dr. William Thompson in snippets talking about the validity of the 2004 MMR study, another recording has been released of him discussing thimersol being given to pregnant women in the form of the flu shot.  I will attach it so you can see what I am talking about.  The validity of this recording of his voice in particular has not been confirmed, but he did confirm in his press release today that although he did not know he was being recorded, the initial recording relating to the MMR study was him.  I have no reason to question that the second one is as well.  The second one actually bothers me much much more- probably because I was pregnant with Nate during that whole swine flu panic in 2009- I had the flu shot and the two swine flu shots while pregnant because I wanted to protect my unborn child.  Now….oh man.
I am not even going to attempt to change any minds or come out as pro or anti vaccine here.  I don’t know what the hell I am anyway at this point.  My boys are fully vaccinated, completely on time, because I was being a “good” mom.  They got their flu shots- until, that is, we started with our current, amazing pediatrician who advises against giving a shot with thimersol in it to my sons with autism.  So I don’t do it anymore.  Last year my husband was the only one who got the flu shot.  And guess who got the flu?? 

What I do want to do is give some background on the evolution of my thinking regarding vaccination, any links to autism, trusting the cdc, etc.  I have mentioned a million times in the past that I am a nurse.  I thought I knew it all, had taking care of my kiddos all figured out, especially the medical aspects.  My older sister had her children first, and questioned the traditional vaccine schedule.  She altered it in a way that made her more comfortable.  I scoffed at this- sorry honey, but at the time I did, just not when we talked,ha.  My sister was a “granola” girl, you know, home water birth, no epidural with her first baby (is she NUTS lol), I figured she was just questioning everything “mainstream”.  I thought it was silly.  The recommendations are there for a reason, and we should follow them, right?
Right
When Jack was born, I had a sucky obstetrician- it’s just a fact.  She didn’t send my medical records to the hospital in time (I was only a week early), and because they didn’t have documentation that I was immunized against hepatitis B, it was required by law that Jack receive his first hepatitis B shot before he was discharged.  So I said ok.  My child screamed for nearly 36 hours after he had his shot.  Not, oh, this baby is awake and realized he doesn’t like being out of the womb crying, I mean bloodcurdling screams, and he could not be calmed by anyone.  Not the parade of nurses, lactation consultants, doctors, grandparents, his clueless (at the time) parents.  Nothing could console him.  It was one of the most distressing things I had ever seen- here I had my first son, I was so full of joy, and I couldn’t comfort or soothe him.  It was terrifying.  Something was not right.  To this day, I feel like this had a permanent effect on him- he was just different.  When he was born he didn’t even cry- he just sat there looking at the warmer light.  The nurses kept smacking his feet to try and get him to make some noise.  After that shot, he never slept in a bassinet or crib for over an hour again, he was restless, fussy, there just aren’t even words.  He was tough, that’s all I can really say. 


Then Nate.  After my experience with Jack, I took charge of this birth experience.  I did hypnobirthing, did not want an epidural, did not want anything interfering with the natural process.  I mean I had a heplock in my arm in case they needed to hook me up to an IV, but they never did.  I did not allow any shots for Nate while we were there.  He did great.  He had a rough first year and a half physically in terms of infections- ear infections, upper respiratory- lots of antibiotics and nebulizers.  And yes, he had all of his shots on time.  But he had great eye contact, was picking up words, playing with toys appropriately, pointing- things I really appreciated because Jack had never done them (except the talking of course).  That changed at 18 months.  Yes, he had a huge round of vaccines.  And YES I do think that played a role.  I also weaned him from breastfeeding right around that time- maybe that was a factor.  Maybe it was already, as the mainstream medical community would say “in him” and the timing of his regression was coincidental.  All I know is that I lost him.  And it was by far the worst experience of my life.  I will even post before and after videos for you. 

Before (he was about 1)
After (almost 4 years later):

  

This is not to "prove" vaccines caused Nate's autism.  I don't think that it was a causation thing- I do think it's possible that this one more assault on his little body was a tipping point or switch- that he was on his way there due to genetic predisposition and this was a final trigger.   I want people to understand that this regression concept, it's real.  Look at his interaction before and his interaction now.  And since initial diagnosis, he is GREATLY improved.  

So my point.  I am not anti-vaccine.  I am pro vaccination- careful vaccination, especially if there are risk factors- such as in our family where there is a history of autism and other autoimmune issues.  (yes, I believe autoimmunity plays a role in autism, so there).  I AM anti bashing.  The things that are being said to autism parents who dare to QUESTION the norm, to express their concerns about the current vaccine regimen are slammed like you wouldn’t believe by people who have no clue what autism parents have experienced or continue to go through.  Even in light of the new revelations of the past week, which actually most people don’t know about since the media is not reporting it, this attitude remains.  When the media finally did speak up this evening, they focused on what may be a crap retrospective analysis of data by Dr. Hooker instead of the statements of the esteemed CDC researcher Dr. William Thompson.  Pay attention people to the credible person speaking- he questions the study- he thinks further research into the safety of vaccines is warranted.  We are not morons.  So stop saying things to parents like:
Such selfish parents.
Silly people endangering us all with their self-perpetuated fantasies.
VACCINATE YOUR CHILDREN YOU MORONS! PRAYING TO THE "GREAT SPAGHETTI MONSTER IN THE SKY" WILL NOT CURE YOUR KIDS!
Anti-vaxxers are a danger to society and bad parents
Here is Dr. Thompson’s press release from yesterday evening:

This is not a hoax, this researcher released the above statement, and is questioning the validity of the paper they generated.  He is calling for further research.  While telling us to continue vaccinating.  The results he is speaking of affect a very small segment of the population, true, but I don’t think it’s these specific results that have parents so concerned.  I think it has much more to do with the idea that potentially important information was left out of the final report from this study.  And if it was done in this study, what about the others?  This doctor co-authored I believe 9 related studies.  So is this a one time thing?  Or is there more to come? And I think it’s right to question that at this point. 



Tuesday, 12 August 2014

My Child Is Mocking Me

I have to give my little Natey credit- for someone with limited verbal resources, and supposed “impaired communication” (depends, in my opinion, on what you consider communication), he is certainly making potty training a wild and frankly entertaining ride for mommy.  And yes, I swear to God, my child is mocking me at this point. 
He continues to resist the potty, crying when we take him, hitting us, screaming  no, saying “don’t like”, occasionally “don’t like potty” , “don’t want”.  Anger always makes him use his words, so that’s nice to hear when you usually struggle for each word.  The hitting, not so great, neither is the kicking.  I am not one to ignore my child’s unhappiness, but this is a change in routine for Nate- he is not going to like it- it’s out of his “comfort zone” and for any child with autism this is extremely difficult.  We just have to work through it. 

He has been communicating his dislike for the potty in other ways as well- such as sitting on the potty with me for 20 minutes, walking out of the bathroom and wetting his pants  5 minutes later and then SMILING at me or laughing when I say “accident” and “uh oh” .  NOT funny.  OK, a little funny. 

He still likes to watch his little social story video about the potty sometimes.  It goes something like “go potty please.  Walk walk walk to the bathroom, pants down, sit down on potty, I’m going pee pee….” Etc.  Well I took him to the bathroom the other day and he was not happy about it.  He sat down on the potty and I whipped out my iphone to show him the story.  As the app was loading he looked at me with this sarcastic little grin on his face and said “walk, walk, walk”, and then started laughing.  Mocking.  Me.  He has never repeated words of a story like that before though, so actually it kinda made me well up a bit. 

He capped off the past few days of fun today by stalemating me from 7 am to almost 1pm- nothing- not a drop.  I decided I would give him a taste of his own medicine.  We were gonna sit there in the bathroom until he produced some results!  I was working on a test for work while he watched a movie on my phone.  After about 40 minutes, I looked over and he was going!  Halleluiah!  I praised him heavily, gave him some marshmallows- he smiled, and proceeded to drop my iphone right into the full training potty.  UGH.  
Somehow, even when I won, he got me!  Damn it!  Now my phone sat in rice for about 6 hours and is working fine, except the charger won’t fit in it, so I suspect a grain of rice is lodged somewhere where I can’t see it, which means a trip to the iphone store.  On the bright side, he stayed dry all day today!  That is the second day so far in let’s see, 11 days of potty training, which may not sound like a lot, but it is two more days than he would have had if we weren’t trying, so I’m pretty happy about it. 


The kid is a force of nature.  I am telling you, he is SMART.  He is so “in there” and just taking his own sweet time showing himself to us.  

Saturday, 9 August 2014

Autism, Limited Speech, and Potty Training.....Oh My

This special task can also be described as driving yourself to the brink of insanity all while making your sweet four year old sick of your face.  Or, in my case it could also be called what I did on my very brief summer vacation.  Sigh. 

I have been psyching myself up for this for months.  I have read so many books, not on potty training typical kids, but on potty training special needs kids.  OK, I just laughed my ass off at myself.  I just said “I read so many books” with a straight face. Ha.  I will never forget when my brother in law and sister in law were first pregnant I took a bunch of books we tried with Jack over to them since we weren’t using them anymore.  I think I kind of shocked them with the variety of topics.  It never occurred to me that maybe, just maybe, it was an absurd number.   That maybe most people get, What to Expect When You’re Expecting, and they’re done with it.  Oops.  We had like 30 books by then, I only brought a handful.  Most were about getting your baby to sleep.  Ask me if any of them worked.  So excuse me while I laugh at myself for a moment. 

Anyhow, I read books, my mother sent me a “helpful” power point (sorry mom, but well, ha), but really what I needed to do was steel myself emotionally for quite a process.  It is a well-known fact that kids with autism are extremely difficult to potty train, due to sensory issues, developmental delays (i.e., lack of control of bodily functions) and difficulty communicating.  Nate’s biggest issue is definitely the communication aspect.  We had super difficult sensory challenges with Jack, and we do not have those with Nate, so I can thank God for that.   I developed my “plan” and scheduled a weekend to start, then took the following Monday and Tuesday off so that Nate and I would have 4 solid days to just stay home and work on this with no interruptions.  I resolved to start with taking him every 15 minutes.  Yes, you heard that right, every 15 minutes.  My goal was to try and catch him every single time he went and reward and praise him copiously, thinking that the more positive reinforcement I was able to give him, the more the concept would sink in.
Well here’s the thing, my kid is a camel.  The child pees 3-4 times a day TOPS.  And no I am not kidding.  And still, with every 15 minutes (ok, well we increased to every 20 minutes after 2 days, with 5 minutes on the potty, then 20 minutes in between) we had….drumroll…..4 pee pee successes in 4 DAYS.  4.  4.  I said 4.  And mommy was entering a type of potty psychosis that no one ever wants to see.  Ever.  I am a very goal oriented person and was spending quite a lot of time blaming myself for “missing” opportunities, when in reality, I’m pretty sure Nate was sneaking away to go. I ended up with one of the worst migraines I have had this year.   On the third day, I found a video social story that made a big difference for us.  I am not going to say it will make a huge difference for everyone, but Nate is an extremely visual guy, and my concern was that despite all of the hoopla we were making about the potty, all the books, all the demos, etc., he didn’t understand what he was actually supposed to DO on the potty. This app gives you the opportunity to make the child look like him, and has the child walk through the potty steps, and it uses language that is very much on his level.  He loves to watch it, and I think he understood a bit better after this. 

On Wednesday, I had to take him back to Cisco Center, I had to go back to work, and I really just didn’t have any choice.  I put him in a pull up and talked to the instructors, who agreed to at least try the potty once an hour.  I had zero expectations and figured we would just try again over the weekend.  And then at about noon I got a text---- “success!”  And I burst into tears.  When I went to pick him up at about 3, he hadn’t gone again the whole day- typical Nate- he had an accident the minute we walked in the door, but frankly I didn’t care.  The next day, he went right before we left the house, and around noon I got the same text “success” again- picked him up at around 4 and he had been dry all afternoon- got him to the potty right after we walked in the door and WE had success again!  Then success again before bedtime.  Which means….he stayed dry all day!!!  Now he had an accident yesterday, and I don’t anticipate we will be consistently dry for quite a while, but he is showing signs that he is “getting it” and we will take it.  And we will keep going- hourly for now.  And I am just going to have to chill out.  If we miss an opportunity it is not the end of the world- this is a marathon not a sprint.  We will get there.  

Thursday, 31 July 2014

At Least They're Healthy?

My husband and I often sit and have this conversation.  At least the boys are healthy.  And then we look at each other. Well, they are aren’t they?  We, as a community, are discovering more and more that autism is caused, or at least exacerbated/triggered by other physical issues, issues that need to be addressed, so I guess in that way, no they are not healthy.  But autism is not life threatening.  And that is what we are focused on when we have these conversations. 

Something I feel compelled to share is just how well aware I am of how much worse it could be.  My job reminds me of this daily.  I am a transplant coordinator for an insurance company- and yes I know this may sound kind of hands off, but I assure you, it is not.  I work with Medicaid patients, many of whom are pediatric, even infants, and I form strong bonds with their parents.  I work hard to make sure these little guys have what they need, authorization to get to and from their appointments, to receive their lab work, their scans, their transplants, their follow up care, their medications, equipment, you get the idea.  That is the technical part.  On the other side of that is the part where the moms recognize my voice the minute they pick up the phone and start talking, or crying, so fast that I can barely get a word in edgewise.  The part where the parents are looking for, or begging really for reassurance that their little ones will be ok.  Or in contrast, parents who are dealing with the stress through anger and yell at me, telling me I have no idea what it is like to have a child with challenges.  The blessing in all of this for me is that I am on the phone, not in person.  The phone gives me the distance I need to do what I need to do;   to explain the difficult things sometimes- that they will need to wait, or move their child to a different facility, or change medications.  In the end, these children get what they need- they are ill, there is an established treatment for their conditions and once medical necessity is shown, the insurance pays for it.  If it is an experimental treatment it can be a bit more complex, but often the study will actually pay for it, and if not, the insurance does at times cover it. 
And I understand that these are life threatening conditions.  Ok, I get that.  I go through the medical histories, the lab values, the scans, all of it on a daily basis and make medical determinations based on my clinical judgment.  Here is what irks me- this is not even an option for ANY of the medical treatments available for my children for their autism.  How can this even begin to be appropriate?  HOW? 

I believe with all my heart and also with my brain (which, not to brag, but it’s pretty good) that future generations will look back on this period of history with shame.  Well, for many reasons, but particularly when it comes to the autism epidemic and the lack of action taken to help those affected.   Treating autism as a purely psychological condition is not going to just sweep it under the rug and make it disappear.  The numbers keep growing, and it is not being addressed, not by a long shot.  Google autism definition
1.    au·tism/ˈôˌtizəm/
noun
1.    a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Now, I was happy to see at least habilitative services become mandated in our state this year- ie OT, PT, speech, and supposedly ABA.  HOWEVER, because ABA has not been covered by insurance ever in the past guess what??  There is no licensure for ABA’s in our state.  So even though in theory, ABA done by licensed certified therapists is covered, there are no licensed therapists, therefore, none of the kids can actually have it.  Clever, huh? 

Currently, Board Certified Behavior Analysts (BCBA) are not licensed in the state of Maryland (they are certified nationally). However, a licensure Bill for BCBA’s was passed by the Maryland General Assembly during the 2014 session. It is expected that the state will begin issuing licenses to BCBA’s beginning in 2015.
see?  Isn’t that nice of them?  Baby steps. 

Anyway, let’s step even beyond that.  Into the space where autism is being acknowledged as a medical disorder.  You know the space where most autism parents live.  Only now are the mainstream treatments listed above being covered by insurance, and let me assure you, that alone is still a battle- when we finally got the boys’ insurance company to acknowledge that they needed to pay under the heading of habilitative services we both almost cried- it took months.  Even the oral medications that are mainstream medications (used off label for studies) we have tried have been covered by the studies we participated in- we had to pay for Jack’s medication out of pocket when we continued it temporarily after the study ended.  Other interventions that are being used in autism- they are considered experimental for sure, but can’t that be said for many oncology therapies?  So to list a few, mitochondrial cocktails, vitamin B-12 shots (well, we got these covered with a nice small $70 copay), hyperbaric oxygen treatments, IVIG, chelation, supplementation, special diets, glutathione, colostrum, you get the idea.  And what about the homeopathic treatments I have been using with the boys since April- we have seen MARKED improvement in Nate, no question, but the costs are killing us.  These are the “options” given to autism parents.  Other than of course symptom control, such as anti-psychotics, antidepressants, anti-seizure medications, etc.  Those are covered by insurance.  To me, it just seems like it would make more sense to treat the problem at its source than to run around putting out fires (symptoms) all over the place.  But parents are limited in what they can do by their finances.  Parents are asked about their finances before they are presented with treatment options.  There is no insurance coverage for any of it, so if you can’t pay, well, you’re screwed. 

So though it may be so that my children are “healthy” in so much as they do not have a life threatening illness, they do both have a condition that severely impacts their quality of life.  It does affect their physical health.  And unlike any other condition out there, medical necessity is not something that can be proven as of yet, because a cause has not been identified, and medical treatment has not been acknowledged as legitimate. 
Once again I ask, how can we limit treatments for a disorder when we cannot prove what is causing it?  How can we call a disorder “mental” when associated symptoms include GI disturbances, immune dysfunction, eczema, food allergies, and seizures to name just a few?