Thursday, 30 May 2013

Prayers

I have absolutely nothing to say about my family or my life this evening.  Instead I want to ask for prayers for a very dear friend and her family.  I don't want to go into details, I will just say that these are just wonderful, supportive, loving people who are going through a very difficult time.  When a close friend is going through something scary like this, it's impossible to think of anything else.  It's also a painful reminder that none of us are really in the driver's seat, that we have to depend on our faith and have confidence in experienced medical professionals.  So if you could each just take a minute this evening and pray for healing and good health for these friends of mine I would appreciate it greatly.

And to my friend, I love you and I'm here, as always, any time day, or night.

Wednesday, 29 May 2013

Contacted by the Teacher....Again

Except today it was nothing but good stuff.  I took the teacher's identity off of this and the school name, etc, but wanted to show you what the highlight of my day looked like today.

Hi there-

I snapped these two pictures during play with Big Buddies today. It was the first time we've seen Nate choose blocks to play with, better yet right alongside everyone else. He stacked quite the structure and laughed when it did fall down. He then went right on building- it was great! Also, when the buddies had to leave, he followed them to the door- when I shut it behind them he kept peering up to try and see out the window, like "where did they go?" and then started to cry. Of course it's no fun to see him upset, but it was also the first time we've seen a reaction like that to the buddies leaving, like he wanted them to stay :) Lastly, at recess, Nate, Judah and Elliott sat alongside each other in the mulch, sprinkling it around- Nate usually likes the mulch, but it was cool to see them sit "together" and stay for quite some time sharing the same space.

Yippee!!!!






FYI, "big buddies" is a program where the fifth grade students come and play with the ECI kids once a week.  What a great idea right?


Saturday, 25 May 2013

That New Swing Smell

You can give Jack credit for this very umm, creative title. 

John and I dug in today and worked on the OT space we have been planning for the boys.  The swing I bought on craigslist literally came over night, we already have a trampoline and a sand and water table to put beans in.  Today I found a gym mat for $25 on craigslist.  I will probably want a second one at some point, but it's a great start.

First we had to clear out the front of the garage, which was a MESS.  This took about an hour and a half.  Then I went over to the kids' private OT office and inspected their swing set-up.  Between that and some very excellent pictures of a swivel hook by Meghan Gallagher Houder, we were in business.  Brave woman that I am, I went to the hardware store and found all of the stuff- bought the 300lb load bearing variety.  I know the boys are tiny but the swing is moving and gravity is at play, so I didn't want to take any chances. 



And voila, now we are cooking with gas.


The only downside was that the boys were fighting over the swing this afternoon.  Which is a good downside I suppose.  The trampoline had been buried in the garage for awhile- Nathan went right over to it and had a blast working on his jumping.  Even though he does this every week at OT, he previously hated the trampoline at our house.  He would pretty much climb under it and lie there looking at the netting.  If I tried to put him on it he would scream.  So that's progress for sure.

As for the "new swing smell"?  Here you go.....

 video

Where this came from we have no idea!  It's not even a quote unless someone has been showing him secret new swing smell videos?  Yeah, no.  

Thursday, 23 May 2013

"D Day"

Tomorrow is what I have dubbed "d day".  I will be getting up early, leaving the house with Jack by 7 and heading to DC for a "quick" appointment.  I plan to be home in time to put in a full day of work.  Tomorrow Jack is starting Namenda as part of the study he has been enrolled in.  I am nervous, excited, scared, and hopeful.

  We have been reading a book about Aspergers- I feel like Jack is old enough to notice that things are different for him, and I want to set the precedent early on that yes, different is the right way to say it, not less.  The book I found is called "What It Is to Be Me!- An Asperger Kid Book".

It is like reading or looking at a map of Jack.  It is about a little boy named Danny who has aspergers- he talks about how he's very good at some things, like computers, but has a really hard time with things like writing. (check)  It talks about his very strong senses, and the fact that sound often hurt his ears, and sometimes he likes to wear headphones.  It addresses food texture issues (pasta has never once entered my child's mouth), personal space issues, fixations, difficulty listening, CONSTANT questions about how things work, and taking things super literally.  It is a great book and Jack really likes it.

I tried to use some of these concepts to explain what this new medication is all about, and I have to admit it, mommy FAIL.  I used the example of his "super ears".  Or tried to. I was attempting to explain to Jack that he would be taking a new pill that might help him feel a little different, like things won't hurt his ears as much.  Somehow, he turned it into this- the pill is going to make sounds and it will hurt his ears.  Sigh.  So for the past 5 days I have been trying to undo this damage- every time he takes a supplement that's in pill form we examine it and confirm that it does not in fact have a mouth, so it can't make any sounds.  Hope this works tomorrow.

Here is some anecdotal info on Namenda.  Oh, and I should mention that this study, which is taking place at multiple centers nationwide, just increased it's enrollment from 120 participants to 900- seems it is pretty promising.

http://autismliveshere.com/2012/03/namenda-month/

https://imfar.confex.com/imfar/2012/webprogram/Paper11938.html


Here is the study we are participating in:
http://clinicaltrials.gov/ct2/show/NCT00872898

I am NOT a fan of giving my child drugs.  That being said, this year has been very very difficult for both myself and Jack's father to watch.  His difficulties in the school setting are almost painful to see, and knowing how smart he is and knowing how much the "noise" is getting in the way of him functioning at the level he is capable of is just awful.  I have tried B12, GABA, inositol, DMAE, melatonin and magnesium in terms of natural therapies.  I have tried focalin and intuniv in terms of ADHD therapies.  Nothing has helped, or at least not significantly.  So this is where we are.  This is the next step.  And at least with the study, he will be closely monitored.

So please say a few prayers for our family, the next few days could be very telling. 

Tuesday, 21 May 2013

Partnership

Milestones.  Sometimes I am so busy watching for these in my children that I miss very important ones that are staring me in the face.  This week is yet another busy, rough week for our family.  I have two appointments for Jack's study in D.C., we had no daycare on Monday, the boys don't have school Thursday or Friday and I have two parent-teacher conferences on Thursday at two different schools.  EEK!  Oh and also almost no time off left from work due to all of these appointments.

I aprised my husband of this situation several days ago.  I realized that I was bracing myself as I did so.  In the past, if I am being honest, I would have expected to figure this all out myself.  Sometimes working from home just comes with that responsibility, it's assumed that I can take care of it.  But now it was, "well, I'll take Friday off to watch the boys, we'll have to figure something out for Thursday."  And when I expressed my concern that I wouldn't be able to make it home from D.C in time to get Jack off the bus today, my husband offered to come home early and meet the bus, then he went and picked Nate up from daycare because I was running even later than I expected after answering 3 straight hours of questions about Jack's development for a psychiatrist.  Yeah, that was pretty much torture.  Did he point to objects at ages 3,4,5, how about now, but when he pointed did he follow his finger with his eyes and then look back at you to make sure you were looking or did he only look at the object, or did he only look at you, or did he look at the ground (actually he did the hokey pokey). 

As I was sitting in traffic I thought about how far we have come as a family unit- far enough that while my "old brain" braces for the storm, my logical brain knows that as parents we are a team now.  I don't feel like I am alone anymore, at all.  How awesome is that.

I don't know if anyone remembers that movie "The Story of Us"?  Michelle Pfeiffer and Bruce Willis?  It didn't get nearly as much attention as it should have in my opinion.  It is a really great story of a marriage, the ups and downs, the ultimate decision to give up or dig deeper, and it always got to me, even before I was married. Michelle Pfeiffer does this awesome monologue at the end of the movie that always made me sob like a baby, and I started thinking about it this afternoon.  Now it's stuck in my mind.  For those of you who have been married awhile, does it strike a chord with you too?  Just love it....



OK, cheesy moment done.  You're welcome.

Sunday, 19 May 2013

New Sensory Plan...

This idea has been taking shape (in my mind anyway) for quite awhile.  It started when Nate's OT began coming out of their sessions and telling me about a new word here or there that he would say after some of the sensory activities they do in their work.  Particularly swinging.  I have wanted an OT swing FOREVER for the boys- they both find it very calming, but the back and forth kind that are outside are not adequate for what I am talking about (although as we can all attest, they are pretty calming too).

Here is a good explanation:
http://www.takeaswing.com/bos.html

Great, I want one.  Here is the one I have been wanting:
https://kidsdreamgym.com/products-page/autism-swing-hammocks/joki-hanging-crows-nest

OK, close to $200 with shipping- not horrible, but let's face it, I don't have that kind of money to be spending on a swing, and with the mats that would be needed under the swing, the hanging mechanism, etc, it would be much more. 

So I was sitting in the boys' OT waiting room yesterday talking to a dad, and he told me about this:

From Ikea, for 45 bucks.  Here is the description:  Swinging develops the sense of balance and body perception. It also brings a feeling of well-being and relaxation

How awesome is this?  Oh wait, so awesome that it's been discontinued.  Crappity crap. 

So this mama did what she does whenever she has a problem of this nature- I consulted craigslist.  Well low and behold, there was one listed in Virginia!  For $25!  It was an hour and a half drive each way, but frankly I was up for it considering the circumstances.  So I emailed the seller and after telling her about the boys and where we live, she offered to ship it to us!  And since she is another autism mom, I don't doubt her at all.  This is great news for the boys.

One more thing though....where to put it.  We don't have a large area in our home that we can dedicate to something like this.  I don't trust the boys to have something like this in their room and not try to yank it from the ceiling (call me crazy, ha).  So hanging this swing will involve daddy taking one for the team.  Daddy has a "man cave" in our garage, and well, for him to have this "cave" I have already sacrificed my garage parking spot, so I guess we are both giving here.  Today I casually "suggested" setting up a sensory/OT area in the front half of "my side", while his area would still be in the back half.  And he said OK!  Now it will involve some clean out of other kiddie items, etc, but I think this will be great!  No worries about locating a beam to hang the swing from since the rafters are already exposed.  We have a trampoline, and a tunnel, so really we just need to get some mats to lay out on the floor, and then go from there.  I have lots of cheapy ideas and I think I can make this into a great, calming area for both boys.  I am totally psyched!

And just another little shout out to Ikea and their sensory friendly kids' items.  Look at this stuff:



Now I think that the rings and flat swing are also discontinued (think ebay), but the "egg chair" is not.  The thing spins, and the canopy pulls all the way down in front to make a little "cave" for the child to be in.  The dad at OT said they are probably getting rid of theirs and will give it to us.  I just can't believe that a Swedish furniture company could have such insight!  Or is it that the rest of the world is already in on the secret that there are many kids with major sensory needs?  Either way, I am excited to get started on this next little project.

Friday, 17 May 2013

Bummer Girl Delivers

Quiet week, I know.  I haven't been particularly busy, no major appointments not as much craziness as there has been the past few weeks.  So this is the first time I have really had a chance to take a breath and look at my life in awhile.

Those mommy feelings have been really getting to me this week.  Namely, the feelings of inadequacy.  All moms go through this right?  The feeling of doing so many damned things and not doing any of them particularly well?  That's where I am right now.

Let's see:
I'm tired all the time, my house is a mess, the baseboards look atrocious and the floor is always sticky (even though I steam mop basically every other day- and yes I still LOVE it), the windows are always smudged, the furniture is dusty and there are always loads of laundry sitting in the laundry room both clean and dirty.  I don't feel like I am doing well enough at work, I am always leaving to take care of things for the kids, but with the kids I am never there enough because I'm working.  I can't make it to all of the school parties and meetings, I can't volunteer nearly as much as I would like.  I squeeze doctor appointments for the boys into every crevice of spare time I can find and I haven't been to a doctor in a LONG time, not to mention the dentist.  The dog needs groomed, the walls need to be washed, the kids toys need to be scrubbed, Jack needs new shades in his room, I need to rehang the shade in our room.

Oh, and I have been trying to lose the same damned 10 lbs for ummm....what, two and a half years now?  Lost em once, gained most of them back, have tried so many diets this year it makes my head spin, stopped running, started running, added weights, still not losing, although my arms feel like spaghetti.  But can I bow out gracefully and accept that maybe this is where my body wants to be? Hell no!  That would be way too easy- I prefer to torture myself every time I look in the mirror and get dressed. 

Then the usual for an autism parent-
If I'm working so hard to help my kids why do they seem so "stuck" in one developmental phase (especially Nate)?  Why can't I help him more?  Why is nothing working?  Why can't I make Jack listen to me?  Why isn't his writing getting better?  Why can't we get him to sleep through the night more than 3x's a week?  Why does Nathan still smear poop on his walls and on himself in the middle of the night (quietly) and then greet me with a big grin in the morning?  I feel like a villain every morning- chasing the boys with pills, powders, creams, shots, headphones, and massages while all they want to do is run around like little crazies.  It would be easier if I was seeing major progress, but nadda. 

We don't have enough money to provide the boys with all of the therapies they deserve and frankly need.  Yet I can't work with them on my own too much because I am working to make that inadequate amount of money that doesn't provide all of the therapies that they need. 

My mom told me that if I didn't have anything nice to say, then I shouldn't say anything at all.  THAT is the reason I was quiet this week.  Sorry mom, I caved :-).  Sometimes I think I function more effectively when I am extremely extremely busy.  No time to think- just have to do.

Monday, 13 May 2013

Trial By Field Trip


I took the day off today (one of my FEW remaining vacation days) to go on Jack's field trip to a place called Camp Woodlands.  First of all, I should explain that for every field trip I am "cordially invited" by the staff of Jack's school.  And I get it.  It would really be a lot to ask of a parent volunteer to have a group of kids that included Jack- he needs so much supervision, and chasing, and...yeah, he needs a lot.

I won't lie and say I was looking forward to this day.  I was looking forward to time with Jack, and I was looking forward to the neat activities, but any time Jack is in a new environment, especially one with lots of environmental stimuli and structured activities, it is extremely challenging to keep him engaged, and to make him understand how to behave.  We don't have the luxury of me "giving him a look" and expecting him to understand to stop a behavior or be quiet.  He just doesn't register that type of change in facial expression. 

With all of this in mind, I will say that there were some victories in today's field trip.  Jack loved many of the activities, which ranged from catching fish in a net, to a ride in a row boat (Jack went by himself with two other students and a parent, and even led them in a rousing chorus of row, row, row your boat), to digging for bugs with Mr. Kevin, songs in front of a camp fire, and learning about trees.  He cooperated for at least the first few activities.  He was really ready to be done after lunch and had a mini meltdown at the first activity after lunch, with a burst of inappropriate behaviors, shouting and trying to run away.  I took him for a walk, even took him behind some trees and spun him around some (which is calming), picked him up and swung him.  Did not help much.  He had similar issues at the first part of the tree activity, where the kids were supposed to collect different tree "seeds"- pinecones, acorns, etc in buckets and see how many they could find.  The kids picked them up, Jack took them out of their buckets and threw them back.  There was a trailer in the area and all he wanted to do was climb on it. 

OK, so here's the thing.  Much of this is about me.  Yes, everyone and their brother noticed that Jack's behaviors are difficult, believe me, he stood out today.  What do I expect?  He is on the spectrum, he has ADHD (which is becoming a more and more clear issue each day).  He is going to have a very difficult time with things like this.  There is a reason why he has a full time aid in school, and that is a familiar environment.  I know all of this on an intellectual level.  But I am embarrassed.  Really really embarrassed.  Most of these parents don't know what is going on with Jack- I feel like they just think he is being naughty.  That his mom is right there and just can't calm him or make him behave.  You have to really watch him- he CAN'T HELP IT.  Even when he is really trying to listen, he just can't do it.  Even though I get all of this, it is frustrating, and for someone like me, who has been quite the rule follower her whole life, it is intolerable to me to see people looking at my kid in a disapproving way.  Some parents are better than others, some people are more tolerant than others.  It was a long day to endure with Jack- one that tried every ounce of patience that I have, and one that made me want to stand on a stump several times and scream "he's not naughty people, he is sensory overloaded!!!!"."  I mean, come on, he climbed on the forbidden trailer at one point and informed me that he was activating his "sensory integrator". 

This is the darned blue crab that he saw at the first activity- he could think of little else all day and tried to run away to see the crab on multiple occasions....


Digging for bugs....
Here are the positive things I take from today.  I was paired with another nurse mommy- we talked shop a bit, she was interested in my job and working from home.  She was empathetic and picked up slack with the other kids when I was chasing Jack.  Several of the parent "teachers" were just as understanding, although I could tell that wasn't the case for all of them.  And the other kids- Jack is well loved among many of his peers, and as always, especially the girls.  All of these little mothers just crack me up.  But it's not just the girls, there are some great little boys too.  That really touches me.  Kids wanted him to sit with them, on the bus, at lunch, etc. 
Jack and his buddy on the ride home....

So we both survived.  And we both learned some things.  I guess that would make the day a success.  However, now, I am ready to go sleep- for a long long time.

Saturday, 11 May 2013

The Impact of Autism on Grandparents

Every God fearing person has had moments in their lives when they question God, rail at Him for the hand they have been dealt, wonder what they ever did to deserve what they are going through.  I certainly have felt all of these things since my boys were diagnosed with autism.  I will never forget a conversation I had with my mother in law when Jack was right around 1 year old.  We were sitting right by the steps in my family room and I confessed that I was so relieved to see Jack making good eye contact- that my biggest fear as a mom was autism- I couldn't imagine the idea of "losing" my child, of having a child that could not tell me what they needed.  We both smiled and agreed, Jack was "in the clear"- he had great language and good eye contact.  This is a true story, and one that I go back to over and over again.  The language never changed, but the eye contact left, and thankfully has now returned for the most part.  When Jack was first diagnosed, I lived day to day, and counted my biggest blessing- Nathan, who seemed to be developing very typically.  I clung to that.  And then that was gone.  And it felt like my entire world was crumbling around me.  How could God do this to our family?  What did we ever do to deserve this?  To have such a difficult thing happen to both of our children?  I still wonder "why me" at times, although most of my energy is focused on dealing with the issues presented to me on a daily basis.

There is one thing I have never questioned God about.  When Jack was about 3 and a half, and Nate was about one, my parents moved here from California.  Jack had been identified as having aspergers by this point, but Nate was not yet showing signs of what was to come.  I have never wondered why my parents came to live in Maryland- a place they had never lived before in their lives.  I knew that they could sense my stress over Jack, could see all that our family was already struggling to juggle- two full time jobs, running a household, financial strain, marital difficulties and then therapies and appointments for Jack.  Shortly after they came here permanently is when it all started to hit the fan.  They didn't even know the half of it at the time, it was too much for me to share.  There are aspects of that period that I will never speak about on this blog, suffice it to say, our therapist still occasionally gasps when we talk about this period.  There are very very few families who would have survived what ours has.  God brought my parents here for a reason.  Our family was meant to make it, we needed support, God provided.
There was a point that September when my parents and my mother in law came over- they asked how can we help?  I could see how helpless they were feeling- because at that point, there really just wasn't much, other than financial help, that they could provide.  I remember my mother in law was asking about their diet, she said, does BJ's have any gluten free food? Here, I'll join and you can have the other tag.  This still brings tears to my eyes, because, while all I ever found was applesauce (shame on you BJ's) the gesture meant more than anything.  And I could tell that I was not the only one desperate to do something, anything.

I found this wonderful perspective on being an autism grandparent that I thought I would share:
http://www.tacanow.org/blog/autism-it-takes-an-entire-family/

I can tell you that from what I have experienced, these feelings are very accurate.  I have seen both of my parents and my mother in law cry for my sons.  Sometimes from happiness (when Nate spoke in front of his mimi for the first time at Thanksgiving) and sometimes they have been crying right along with me and John in sorrow or frustration.  I will say this- I love these three people (my parents and John's mom) more than words can express, for their commitment to our nuclear family- through the difficult times and the victories.  Their actions over the past several years are a true testament to the fact that parenthood is forever.  These two mothers have "mothered" us in new ways during this time period, and I don't know how we would have made it as far as we have without them.  I know that I am a mom, but this is what I am thinking about this mother's day- these amazing women and their sacrifices and acts of love during a very dark period. 


Friday, 10 May 2013

The Reason Everyone Loves Jack

There is just something about this boy.  Everywhere he goes, he charms everyone he meets.  Don't get me wrong, he drives many kids crazy.  I'm not talking about that, I am talking about all of the professionals that work with him.  He seems to be a favorite (in my opinion) at school, at his therapies, even at the pediatrician's office.  Meanwhile, he is often driving me nuts.  But I get it, his really cute quirky behaviors are not as cute to me because they affect every single thing I do on a daily basis.  Like the fact that I just spent 10 minutes imploring him to put his socks on because he still has trouble with it and tries everything under the sun to change the subject and avoid the task.  It's cute for a 20 or 30 minute period though, that's for sure (not the sock thing, the quirky thing).

Yesterday's assessments brought out a really funny aspect of Mr. Jack's personality.  His fixations and stubbornness are very real and apply to every area of life for him.  There is not one thing that he does not argue about, down to how I repeat things that he asks me to repeat.  Sometimes I have to try 4 or 5 times to get it "right".  Right tone of voice, right speed, right facial expression- it's a very complicated procedure.  So he had an IQ test yesterday as part of his assessment.  I didn't even realize that the doctor was doing it at first, as it is all pictoral at this age, but I knew he was having one and the only other assessment was the play one, so that's what that was.  She would show him something like a picture of a sock and he was to choose a picture out of 5 others that would "go" with the sock, like a foot.  That's the simplest example.  At one point, there was a picture of a bed, the options where something like a sandwich, a ball, a pillow, shoes, and...well, a picture of a bird.  Guess what my kid chose?  HE sleeps with several birds every night....so....yeah, he chose the bird.  Another choice on a different one was an airplane, which was completely irrelevant to the answer, but of course he chose it.  Made me think of an inkblot test and the fact that my kid would likely see a bird, horse, crab or plane every single time.  Once again- FAIL standardized test, FAIL.  You will never know how smart my kid is because you can't think like him.  I don't even care what the "result" might be, because I sat in for the test and know what he missed and why.  He has Aspergers Mr. IQ, ask him to problem solve regarding his areas of interest- he will blow you away!

Also, my son was the first kid in the history of the world to be EXCITED to have an ecg.  I convinced him that it was a robot detector.  The only issue was that the doctor kept telling him that if he didn't hold still, the machine would think he was a robot.  Ummmm, don't you get it?  He would LOVE that!  Being a real boy would be pretty disappointing to him.  Anyway he cracked the doctor and the study coordinator up many a time yesterday. 

They also got to see how difficult many daily life activities can be with Jack.  And how careful you have to be about what you say in front of him.  When we were coming back from the blood draw, the coordinator told him that the doctor was just going to look at him, like in his ears and stuff.  Yeah, he almost bolted right then and there.  Do NOT touch my sons ears!  He was like, I can tell you, they are fine, thank you.  Then he had to give a urine specimen- the doctor walked into the communal bathroom with us and someone had the hand dryer on- Jack screamed bloody murder and tried to run.  Luckily the person drying her hands was a psychiatrist so she got it and stopped right away.  The doctor had a propeller in her office- I don't even have to say a word right? 

But all of these little quirks are cute as can be on a individual basis, it's only when you deal with every single one of them every single day that you begin to pull your hair out. 

Oh, by the way, one of Jack's new things is to pause, fast forward, rewind or change the movie on the tv approximately every 30 seconds.  He stopped Curious George this morning and Nathan screamed "George!!!!" when he turned it off.  And when the bus pulled up this morning Nate said "Sam" (who is his bus aide).  So Kennedy Krieger, you can just....well, this is a family blog.  Rest assured, you got it wrong.  No regression here.

Thursday, 9 May 2013

Toast

About all I have the energy to say is that Jack's assessment at Children's National Medical Center has been completed.  Physical exam, ECG, bloodwork, play assessment and IQ test.  He did very well and even handled the blood draw without too much freaking out.  I will never again agree to do 2 appts at Children's and 1 at Kennedy Krieger in 4 days ever again.  It's not just trying to physically endure it while still working, it's how emotionally exhausting it is to go through these things with the kids.  I am proud of both of them, and I am sure they are tired too.  The fact remains that mommy is the only one that went to all three appointments and MY brain is officially fried.  But....mission accomplished, and hopefully this fried feeling is temporary, so it's worth it.  But like I said, never again.

Wednesday, 8 May 2013

Took Longer Than I Thought

For me to burst into tears after today's assessments.  We did this study for the greater good- to benefit autism research.  There was no "personal" benefit for our family other than some financial compensation, which, while nice, was not reason enough to endure the things we have throughout the SEED study.  I have been at it for about a year now with this study.  I have done about 4 phone interviews and filled out countless surveys and sent them in.  Today was the final step- assessments for Nathan and lab work for him, me and John.  The lab work was the least painful part to be completely honest. 

There were about 2 hours of assessments for Nate and about 3 hours of "interviews" for mommy.  Daddy stayed with Nate during the assessments, so I don't know for sure how he was acting while they were trying to work with him.  It seems that he had a very stimmy day and they couldn't get much out of him.  This isn't really surprising- most kids don't perform to their potential in unfamiliar environments, and this is especially true when the child has autism.  And these people, never having met Nate, do not know his particular "catch phrases" (things that get his attention) or the best way to approach things with them.  I am beginning to realize that standardized testing in children on the spectrum is a joke.  Isn't the whole point that it's a spectrum and that these kids do not respond in typical ways?  The typical testing isn't going to show what Nate can do.  Or that's what I tell myself, and what I need to believe, especially today.

The interview was BRUTAL.  I mean, "does Nate look at you when you walk in the room?" "how about other people he knows?" "how about strangers"  "how about when he was 16 months old?".  That is just a BRIEF sampling.  For three hours.  Does he jump?  Does he hop?  How is his gait when he runs?  Does he hold a spoon "appropriately?"  Well the food almost always ends up in his mouth.  Almost every social and developmental scenario you can think of was addressed.  My brain literally hurt when it was over.  And also, I was extremely depressed.

When they reviewed the results, we got the same sympathetic look as always before the examiner started.  I even told her, "hey it's ok, we're used to this by now."  Think again.  They assessed that Nate has regressed by 4 months since his last assessment 6 months ago.  I'm sorry, but I really don't think so.  I mean, I don't THINK so.  Then I start second guessing myself.  Is he doing worse?  Because saying he regressed 4 months in the last 6 actually indicates 10 months of loss if you see where I am going with that.  Because he should have gained 6 months in 6 months right?  But if they are saying he lost 4.....

I called my mommy- what else is a girl to do? She called bull pucky.  And I think I agree.  I think that the testing environment severely affects a child with autism, as does the identity of the tester.  I think that his teachers in his school know better when to persevere and when he truly can't do something.  And I need to try and keep that in mind.  This just left a really bad taste in my mouth....

The greater good is great, but our good is important too.  I am taking a break from "extra" assessments for my kids for awhile unless there is some true benefit for them- like therapy or a medicine.  This whole, "yep, your kid still has moderate to severe autism" thing really wears on you, you know? 

Tuesday, 7 May 2013

The Caring Professions

For some reason it just occurred to me this morning that nurse's week, teacher appreciation day, and mother's day are all in the same week, at least this year.  Why is that?  I have a bone to pick with this...These are three of the most emotionally taxing professions out there- don't they each deserve their own separate celebrations?  I know there are plenty of male teachers and nurses out there these days.  That being said, the fact remains that the majority of teachers and nurses are still women.  And the majority of teachers and nurses are mothers. This is why I don't like this whole consolidation thing.

This year I have become more aware than ever of how difficult it is to be a teacher now.  How little time is allotted for lesson planning, how much of this work is done on the teacher's own time, and with the teacher's own supplies.  I see how many times Jack's teacher has emailed me during off hours to either make me aware of her concerns or to address mine.  I see all of the social and family issues that need to be addressed.  With mainstreaming and "least restrictive environment" in schools the teachers have many students with needs that are way beyond what they can address with the resources they are given.  I think of how much attention Jack requires- and he's one of 20?  Now I know that he has a full time aid- now- but he didn't used to.  How on earth is one person supposed to be able to accomplish this?  All day of "I need this" "I need to go potty" "so and so isn't being nice to me", "HELP ME!!".  And then they go home and what do they hear?  The exact same thing!  Not to mention the juggling that occurs while trying to balance work and home life.  The constant struggle to give one's all to both while never being able to accomplish it because, well, it's impossible.  These women deserve two very separate occasions to recognize their work on each front. 

And nurses?  Let's see, if they are in a clinical setting, they are working 12 hour shifts most of the time, never sitting down, dealing with many of the same demand as teachers, except it very often IS life and death, and there are nasty substances involved, and families who are terrified and sometimes emotionally abusive to the closest person because of this.  Who is that closest, most accessible person?  The nurse.  The biggest commonality between nursing and mothering seems to be that nurses and moms are the ones blamed.  If something doesn't happen fast enough, or the outcome isn't what was desired, or if the patient or child doesn't respond to an intervention in the desired way- who does it fall on?  Nurse/mom.

 I am no longer in a clinical setting, I am a case manager, but the same rules apply, just in a different way.  In a sitting and listening to a patient with hepatic encephalopathy vent for an hour and alternate between screaming at me because they don't have a liver yet (clearly I have NO control over THAT), sobbing, and telling the person listening to our possibly recorded conversation that I deserve a raise kind of way.  In a calling the parents of a child who passes away after a transplant and following up/listening to them grieve kind of way.  In a "please Jennifer, I need this transplant approved in an hour because I forgot to request it when they were listed three weeks ago and now they are going to the OR" kind of way.  For me, this coincides with doctors asking for MY childrens' every reaction, mood, change, aggressive act, and sleep pattern and acting annoyed when I can't recall every detail on demand (like yesterday when I was told I was only signing consents, but was actually asked for Jack's full medical history on the spot).  And giving my own children shots in the morning, and crushing many pills and opening capsules into their juice, sprinkling "yeast aid" under the almond butter on their toast, holding them down to give them fish oil...

And that's just the atypical stuff that applies to an autism mom, or the mom of a child with significant medical problems.  This doesn't even address all of the typical mommy stuff- booboo's, activities, playing, bathing, dressing, comforting, feeding, all of that good stuff.  Once again, I feel very strongly that mommy nurses deserve two very separate occasions- one for being a nurse, and one for being a mommy.

Nurses, teachers, and mommies- apparently this is OUR week.  I celebrate every teacher, mommy, and nurse I know.  And since we are all multitaskers to begin with, I guess the powers that be figured that the days honoring our work should reflect this?  So tell your families it's time for THEM to multitask and celebrate everything that you juggle and accomplish on a daily basis!

Monday, 6 May 2013

A Wild Week

This is going to be one crazy week for our household.  We already had quite a bit going on- John has to work late 3 nights, and we are attending the last portion of the SEED study for Nate on Wednesday up at Hopkins.  It goes from 9 to 5 and will involve assessments of Nate, blood and hair samples from Nate, John, and me, and questions for me and John as well.  Nate will also have an extra tube drawn for the study where they will mix his blood with mercury and look for an immune reaction.  So that's already a long week.  Next Monday, I am going on a field trip with Jack's class- to a park, with water, and canoes, and 5 and 6 year olds.  I do not have the time off from work available to do this- but I was asked by the teachers to go and look out for Jack, so that is what I'm doing.

Then the phone rang this past Friday morning.  It was really good news- however it was also very overwhelming news as well.  About 6 weeks ago, an acquaintance made me aware of a nationwide study being conducted on school aged children with Asperger's and Autism.  It is an investigation of the use of a medication called Namenda in kids with these conditions and tracks improvement in focus, social skills and over all behavior.  This drug was initially labeled for use in Alzheimer's patients, so it is already approved for safety, this is just a new use.  It has been being studied at 108 locations nationwide.  The idea of using this medication in Jack is exciting because of how ineffective the traditional approaches were for him- they caused major sensory issues which became intolerable.  I was thrilled to hear about this opportunity, and the only negative I could see at the time was that Jack needed to be 6- no problem, that was coming in a month right?  Not so fast- the study was closing on April 30th- 6 days before his 6th birthday.  Seriously?  I had already spoken with the boys' autism specialist about this issue and he was willing to try Jack on the medicine off study, but of course I would much rather he be closely monitored if possible.  The phone call last Friday was to inform me that the study had been extended by 1 week.  So Jack is in!

While this is wonderful, it is also a rush to get him through the evaluation process by the "deadline" to start the medication which is the end of the month.  This requires no less than 4 appointments at Children's National Medical Center in D.C.  First one was today- and it was for me only- to sign consents.  Jack and I will go Thursday for his evaluations, then on the 21st I will go for a parental interview, and then if all goes well, he will start the medication on the 24th.  It is a long commitment, possibly a year and a half.  And we will have to go down to D.C at least once a month.  But if it helps him, it will be worth it.

In case you're keeping track- that's a total of 3 days away from work for kid stuff in one week.  John asked about summer vacation planning today and I had to laugh.  THIS is where my vacation time is going.  John would be willing to split the study trips, but we can't because a bunch of questionnaires have to be filled out with each visit and the investigator needs the respondent to be one consistent caregiver.  Understandable, but well, blah.  Keep your fingers crossed for Mr. Jack.

Sunday, 5 May 2013

An Awesome 6th Birthday

My boy.  Jack did absolutely fabulously today.  It was the best birthday I can remember for one of the boys in a long time, maybe ever.  It was the first time for several things- first time Jack basically "created" his own guest list, and the first time we had a party away from home.  Best. thing. ever.  Instead of running around like a fool cleaning the house last night, I was wrapping gifts.  Instead of decorating all morning, I had a nice snuggle with the birthday boy and watched him unwrap gifts.  Awesome. 

As always, I tried to keep Jack's party pretty small.  New strategy this year and it did not work :).  We had his party on the Eastern Shore in Maryland, about 45 minutes from home, at a horse farm.  I let him invite the kids from class that he wanted to come, figuring maybe two or three of them would make the trip, then our family friends.  One kid RSVP'd no- we had close to 20 kids there today including siblings.  I was slightly worried for Jack, but we were outside the whole time and there really was no noise factor to overwhelm him.  And he had an easy exit if he needed a break.
This farm- it's incredible.  It is called Dominic's Farm in Queenstown, MD and it has several very special aspects to it. 

Dominic is the name of the owners' son.  He has autism and is grown.  He still comes home and mows the lawns every weekend.  As a result, the owner, who runs the parties, is incredibly sensitive to the needs of kids on the spectrum and adjusts things accordingly.  For instance, she had us come out a few weeks ago and spent about an hour taking us around, introducing Jack to the animals.  And he remembered every single name- has been talking about riding on Zach ever since (horse).  She keeps the "structure" very flexible.  And because it's such an open area, any type of behavioral issues from either boy are much less glaring.  Nathan ran around shaking a rope for a good 20 minutes and stimming, and I don't think anyone noticed.  Although to be honest, I really just didn't care as long as he was happy. 



This is Jack sitting beautifully listening to Miss Kathy talk about being careful around the animals.


Jack and Sean watching Angry birds while waiting to ride

















Mommy's proudest moments today:
- Jack handled letting other kids ride the horse like a champ- no meltdowns at all. 
- Jack decided he did not want the birthday song and with the help of his OT made it very well known- he usually cries at the end of the song, all of the clapping really bothers him, and he recognized this and avoided it. 

Most special moment- I was walking to the fields with the boys, holding Nate's hand, and Jack was walking next to us.  One minute I looked down and Jack was holding Nate's other hand.  I cannot stress enough what a big deal this was.  This has never ever happened before, it was such a wonderful sign of affection and it still brings tears to my eyes.

I am proud of myself.  I realized as I sat down to write this today that I was more at ease with the boys and their behaviors today than I have ever been.  I did not offer one explanation for either of their actions.  Now, they were both very very good, but as I said, Nate was shaking rope and running laps for a good part of the party.  Jack's anxiety was very obvious at times and I am sure that some people wondered why he opted out of the birthday song.  I felt no need to explain.  I don't think I uttered the word autism all day, except when talking to the owner of the farm about treatment options before the party.  This is a huge first for ME. 

Hilary Clinton said it takes a village to raise a child.  That's one child, and I assume this child is not on the spectrum.  It takes a lot more than that to raise two children on the spectrum.  And damn, we have built one Hell of a village over the last several years!  I looked around today and behind the kids and parents from Jack's class saw some of the most caring supportive people I have ever known.  My mom and dad, my little sister, John's brother, some of my very best friends- Joann and Helen and their families, another special needs family we have connected with who understands our life like no one else ever could, a family from the boys' OT practice.  Preschool friends who Jack actually connected with back then- which was huge back then.  Jack's OT made the trip to see him- she has been working with him for three years now and has earned that gorgeous Jack smile-  not the regular cute smile, but the one reserved for people he really loves.  We missed Jack's mimi, one of his most favorite people, very very much.  She has been an invaluable support to our family during our "rebuilding" process, and Jack just LOVES her.  But we will see her tomorrow.  All of these people are here for the boys, here for our family, and their presence made Jack, and frankly me and John feel secure enough to really let our guard down and have a great time.  I know that Jack will never forget this experience- and all John and I could do for most of the party was grin at each other like idiots, because we knew we kicked some serious butt on the party front today and our little boy was thrilled.

Saturday, 4 May 2013

Things Mommies Never Forget

I am just sitting here wondering- does every mom relive their birth experience the day before and day of their child's birthday?  I keep thinking that as Jack gets older maybe it will become a day JUST about him- but so far, no go.  His party is about him, his gifts are about him, we celebrate HIM, but really it's about all of us.  And it will always be about me becoming a mommy.

Each year I think of working all day Friday May 4th while have contractions about every 8 minutes.  I think of the conversation I had with my older sister Sarah for about 40 mins, at the end of which she gently pointed out that I had had at least 5 contractions.  I wrote down the hour and minute of every contraction after that for like 5 hours.  I walked, I prayed that this was it.  I called John at work and let him know, gave him the ok to go to his work happy hour (was I NUTS???), made my mother and mother-in-law's mother's day gifts.  When John came home, we walked again, then went in.

Those hours of my life are probably the most bittersweet period I can ever remember.  The nerves, the joy, the anticipation, the naked fear.  I have never clung to my husband in that way, before or after that night and the next two ensuing days.  I wanted him by my side, I was terrified, and my mom and sisters lived far away.  Like, didn't want him to take a shower scared. 

I think about the actual birth, how out of control Jack's birth felt, how helpless I felt when he didn't cry at birth.  He just didn't wanna.  He was breathing, but he was blue, and he needed to scream to remedy this issue- already he was stubborn :-), which is so unlike anyone else in his family (ha).  The profound change in Jack after he had his hepatitis B shot will be stuck in my memory for the rest of my life- I will always wonder....what if my OB had faxed my records to the hospital like she was supposed to?  Then Jack wouldn't have had to have the shot (Maryland had a law that if there was no proof at birth that mom is immunized then baby must get the first in the series in the first 24 hours of life).  Would he have still screamed for a full 24 hours if he hadn't had the shot?  Would our path have been the same?   I just don't know, and I probably never will.  But I will always wonder.

At bedtime tonight, I asked Jack if he knew where he was at this time 6 years ago.  He said no, and I reminded him that he was still in mommy's tummy.  He giggled and poked my stomach a few times, then he asked how I knew he wanted to come out.  I told him he squeezed the heck out of my belly until I drove to the doctor and told her to get that baby out of there!  Jack just assumes that he came out of my belly button and that is just FINE with me at this point in his life.  He asked what he said when he came out.  I told him that he said "hey, what's up?" and he thought that was hilarious. Then I asked if he thought he really said that and he said, "no, I said waaaaaahhhhh".  Eventually this was true.  He asked me what I said when he came out.  I told him that I thought that I had never ever loved someone so much in all of my life.  Then my little boy kissed me.  This is the first time he has ever expressed any interest in his birth and it just thrilled me.  God I love that boy.

Friday, 3 May 2013

Totally in Denial...




This morning while Jack and I were walking to the bus stop, he reached over, grabbed my hand, and said "I love you mommy".  Swoon.  I am so thankful that this boy still wants to hold his mommy's hand sometimes.  And I'll be honest and say that it's moments like these that make up for him screaming "stop or I'll shoot" when I give him his shot in the morning. His smile has the power to melt me and John instantly.  Really, almost anyone, he is a beautiful child.


 

That smile hasn't changed- not one bit.  And this gorgeous boy is going to turn SIX on Sunday.  I have been a mommy for 6 years???  Totally. In. Denial.

Thursday, 2 May 2013

A Few Quiet Moments

I have been missing Nate- like bunches.  It is a huge change to have him out of the house basically from 8:30am to 4:30pm.  It gives me new appreciation for my job and the fact that I was able to have the boys nearby for so long.  He is getting what he needs in this current situation.  But here's the thing- now whenever I have Nate with me, Jack is there too.  I used to have at least an hour and a half in the afternoons with just Nate.  Not so anymore.  I can give Jack attention with Nate around but I have a very difficult time doing the reverse.  Nate just cannot compete with Jack's volume level and extreme verbosity.  And frankly, even when he tries I just can't hear him.  Thursdays especially stink- Jack has OT at 5pm so I get him off the bus at 3:50, drive directly to Cisco Center, get Nate, fly home, shove some food down their throats, wait for John to get home, then drive Jack over to OT.  It's close to 6:30 by the time we get home, and we take the boys up for baths at 7pm.  Blah

So tonight we made it home right at 6, and I figured that since it's finally light out quite a bit later I would just go ahead and take Nate (just Nate) for a walk.  I love to listen to him babble.  And if you listen really carefully, there are words in there.  His verbal development is really unusual, I guess because he isn't always using language as a way to communicate with others, being that he's happy in his own little world.  But his little sing songy talking while we were walking did have some words kind of thrown in there- I would never have heard them if Jack was with us.

The other issue has been that when I take both boys to the playground it's just not fun.  Jack remains terrified of anything that buzzes- including all flying insects.  I took both boys to the playground around the corner last weekend and Jack would not get out of my lap because there is a trash can on the playground, and thus bugs.  So Nate and I stopped at that playground, just the two of us, this evening.  I pushed him on the swing and played with him on the shaking bridge- which he loves.  It was just so nice to be with my littlest son, to be able to hear him and give him my undivided attention.  So simple, right? 

Here are some pics from our "play date"










The poor kid is doomed to wear airplane shirts for the rest of time- hand me downs from big brother :-)