Discouraged

I've been having a bit of a difficult time writing lately.  It's not that stuff isn't happening, it always is.  I am kind of in autism mommy burn out.  I am feeling discouraged, exhausted, and kind of lost.  I am not sure what steps to take next.

Jack's study drug hasn't really done much yet- he continues to be more emotional (oh joy!), but that's about it.  He is still sleeping pretty well.  It hasn't even been a month yet.  So I am waiting.

Nate has been regressing again.  Not using many words at all right now, except more, and a couple others.  He is very stimmy, always very stimmy.

As I continue on this journey with my beautiful boys it becomes more and more obvious why the puzzle piece was chosen as a symbol for autism.  The problem is so complex, and the answer is not the same for any two children.  I have watched so many kiddos pass mine by, kids who were born way after Nate asking me why he's not talking.  Kids starting a gluten free diet and "waking up".  It's hard, it's just really hard.

We have been gluten and dairy free for almost 2 years.  I have been giving Nate shots for a year and a half- that's a miracle thing for many.  Not us.  Curcumin?  A year.  not much.  Yeast treatments- many- temporary results at best.  Am I supposed to keep Nate on nystatin for the rest of his life?  I just feel like I am missing some huge piece of this puzzle and I don't know what it is.  He didn't show any toxicity re: heavy metals when we tested, chelation isn't going to really help.  The therapies have been consistent so it's not that.

I want to be that mom who sees her little boys start to thrive.  I want to have an aha moment and know that things are going to improve.  And I feel like it's my fault that it's not happening. 

I Can Do Guilty All By Myself

I really really don't need any help AT ALL.  Those of you who read my blog regularly are aware of just how much mommy guilt I walk around with on a day to day basis.  Not enough, time, resources, money, etc. 

I do make an effort to go to as many of the kids' school activities as possible.  I volunteered in the classroom during the year when I know for a fact some parents who don't work outside of the house did not.  I went to every holiday party and even did the stinking craft at one of them.  I chaperoned the field trip.  I attended 5 buzillion IEP meetings.   I went to Jack's tea earlier this week and I went to Nate's school for the end of year party today.  Problem is, the party is Monday.  Awesome.  I'm ok with it, and didn't beat myself up over getting dates mixed up- life is crazy.  And this gave me a chance to really observe Nate in class, he pays more attention that I was expecting, so that was nice to see.  The teacher and I had a little laugh over me being there, but they are happy for any parental involvement so I just stayed.  The smile on Nate's face when he saw me was priceless.  I stayed for the rest of his class and then walked him to his bus, which takes him to Cisco Center, as I had to go back to work (like ANY working parent).  So why, pray tell, did the bus driver shame me?  "you mean you're not taking him home with you??"  "why not?".  Well, probably for the same reason your grandchild doesn't ride on your bus route with you I'm thinking.  I get the feeling she thinks I am not very involved in Nate's life- I mean my mom picks him up from the bus Mondays and then Cisco employees the rest of the week.  So she doesn't see me.  But I am working.  And she has known that for awhile.  So why question it again?

The same thing has happened with the morning bus driver/ aide.  "Why does Nate need to go to Cisco Center when you're right here?"  Because I have a full time job- I work out of the house.  "Sure you do" wink-wink, nudge-nudge.  Ummm, no really I DO!  I recognize that I do not "look" the part of a working mom.  That is one of the perks of working from home- I wear sweats, or jeans, my hair is in a ponytail.  That does not decrease the value of what I do.  Or the demands.  I have made approximately 40 phone calls today and authorized 4 organ transplants.  Some on very small children.  I have called and reassured families, ditto to impatient providers.  I have worked on palliative care for another person, and called countless others.  So there.

I don't need anyone to call me out on the fact that I am not with my kids all of the time.  I am well aware of it, and most of the time I hate it.  We need the money in order to provide them with the care they deserve, oh, and that roof over their heads as well.  And I most certainly do not need to be shamed when I have taken my lunch break to come try to convince Nathan to say "more pops" at school, but then have to return to work.  I do not need someone else to judge me- I judge myself plenty.  Thanks

Scary But Essential Facts

This information is staggering, and terrifying.  Yet, I have heard it over and over again.  For those of you who don't know.....

Little Steps Mean the World

I don't know if this is even significant enough to write about.  Except that it is hugely significant to me.  I pulled out a book for Nate this evening that we haven't looked at in quite awhile.  First of all, he hasn't been attending to books too well lately, which is kind of depressing considering that it used to be one of his favorite things.  He used to point to all of the pictures of things in this book:
http://www.amazon.com/A-Night-Prayer-Amy-Parker/dp/B001SWG7L0/ref=sr_1_1?ie=UTF8&qid=1370477471&sr=8-1&keywords=night+night+prayer

But since he has been screeching when I try to get him to hold still for a book (this is when I read, he wants to look at it by himself, not with someone else), I was not expecting him to do this.  Imagine my surprise when after at least a month he still remembered which thing was which.  And not only that, but when I asked him to touch the tree, he touched each individual tree, went right down the line.  He has only ever touched one before, basically to make me shut up I think :-).  He did the same on each page that had multiple items (bird, cat,etc).  This is a big deal, it shows that he truly knew what the object was, he was able to generalize when the same object looked a bit different, and that he wanted to acknowledge all of them.  I know, is that really exciting?  Well, when you have a three year old that still has fewer than 15 meaningful words, the short answer is YES.

But Really, Why Do They Do That??

I get it, ok.  My kids are not neurotypical, so the usual rules do not apply.  I mean, I called Nathan's name 30 times, in his room, with the door shut and no distractions this evening before I finally got his attention.  Results not typical.

But these school events?  I just don't know if I will ever get used to them.  Today Jack had what was called "hoot tea" (the school mascot is an owl) at school.  The kids made these books that are "all about me" and they presented them to the parents.  This is awesome, and the kids were proud for sure.  It's just that everything about this was so hard for Jack. 

First, the making of the book for him was no doubt excruciating.  He had his ideas down, it wasn't that.  It was that every page was written, and had a picture.  Which meant writing and drawing- for a kid who just had an alternative technology evaluation due to his struggles with these very things.  A kid who has a scribe for any lengthy assignments because writing is just so challenging for him.   His book had magazine pictures pasted in it instead of drawn pictures.  He just didn't have the stamina to do all of the drawings that the other kids did.  God bless whoever decided to give him that option though, at least he had something to show everyone. 

So all the kindergarten parents came to school this afternoon for "tea" so the kids could present these books.  This involved the teacher reading a little autobiography about each child- about 20 minutes of sitting quietly.  Then each child came to the front of the class and "read" their books- another good 25 minutes.  So my child on the spectrum was challenged to sit still and quietly for 45 minutes in a large crowd of unfamiliar people with cookies that he couldn't have within site.  He could think of nothing else.  That is until one of the kids mentioned their pet hermit crab.  Then he could mention nothing else but that.  Then he had to present his book- he said something silly on the first page and then pretty much lost it- could not stop giggling, and it was contagious.  God is he cute.

It is so hard to keep Jack quiet.  Really it's impossible.  I was literally turning my hand in a circular motion (to signal, volume down) for the whole presentation.  When that stopped working, I went to "first,then".  All parents use this sometimes, and may not even realize they are doing it, but it is a huge thing for kids on the spectrum.  The incentive is essential to getting cooperation.  So it was "first quiet, then cookie."  I had repeated this so many times, and then when the presentation ended and the teacher said time to clean up the snacks I literally bolted across the room to grab that cookie. 

I took a huge breath- we survived.  And then the teacher suggested that the kids sign each other's books.  Great idea!  It's like a first year book signing.  I totally get it and it will be so sweet to look back at this some day.  And when the other kids do, it will be impossible for them to miss Jack's signature.  Because it takes up the whole page, haha.  I poked and prodded him to write each and every signature- the touching thing is that he really wanted to do it, and many of the kids made sure to come to him to get him to do it, as he was not perusing the room like everyone else.  What a huge challenge this was for him!  I am proud of him for doing as well as he did, and I am proud of him for making friends this year.  I watch him daily and see all of the challenges he faces- the distractions, the sensory stuff, the fixations.  The fact that he can overcome those things and start to build relationships is no less than miraculous.  Jack is miraculous.

But I still hate these school functions!  So there!

3-Day Cleanse

Dear Dr. Oz,  I hate you right now.  I have been interested in doing a cleanse for awhile.  I feel sluggish, I have been dieting for months and working out and losing nothing.  And not like fake dieting, really dieting.  And really running.  Nothing. 

On Friday I set my mind to it and looked for what seemed like a pretty natural cleanse that wasn't too too long.  Here is what I came up with:
http://www.doctoroz.com/videos/dr-ozs-3-day-detox-cleanse-one-sheet

Only 3 days right?  Smoothies....can't be that bad.  And honestly, it hasn't been.  That being said, I am on day 3 right now.  I have chewed nothing in almost 3 days.  I have slept more than usual, I drink water like a fish.  I cheat though and use lime instead of lemon in my water (gasp), and sometimes I even add a little stevia just so I feel like I'm drinking something.  I like the baths, those are nice.  But there are some other issues:

Let me just say- flax seed, gritty.  Also, no amount of pineapple can make the lunch smootie more tolerable with 4 stalks of celery, a cup of kale and a cucumber.  The dinner smoothie would actually be pretty good- except for the freaking cayenne pepper.  Sigh.  Sadly I am looking forward to my nasty green smoothie today- I am that hungry right now.  And this is after I had to take it upstairs to drink it on Saturday- my husband was NOT doing a very good job of keeping a straight face while I tried to chug that crap.  I needed privacy for that.  Oh, and John, thanks bunches for barbecuing all weekend long!  Not.  The burgers last night smelled awful, as did the barbecued chicken on Saturday night.  Just a little bitter, lol

Breakfast smoothie- good stuff.  In fact, I may continue that one for breakfast from now on.  Good way to get spinach in.  And flax seed.  I plan to start the 17 day diet once I finish this, which I have had great success with in the past- and frankly now it will feel like a feast.  Hopefully this helps my metabolism, because I am officially over this whole cleanse thing.  But I will soldier on- I haven't tortured myself for this long only to quit.

Memantine: One Week In

I am going to try to do an update on Jack weekly at least during these first few months of the study.  He started memantine a little over a week ago.  When I spoke with the study coordinator and the psychiatrist last week, they said that some kids show immediate improvement and with others they see nothing for a good 6 weeks- and of course all other possible permutations of progress.  Something of note- Jack is under 20kg so he is on the lowest dose.  The highest weight for the lowest dose is 20kg, and he is 19.6kg.  So he may not get the full benefit until he gains another pound (and maintains that weight for 2 consecutive visits) and gets bumped up to the next dose.  Luckily, with his tapeworm like appetite, I am hoping this happens sooner rather than later.

So here is the HUGE relief for me and John- we have not seen sleep disturbances- neither more frequent awakening nor falling asleep in the middle of the day.  Both of these were huge issues when we tried typical ADHD meds, so....phew.  That's not to say that Jack didn't wake up at 3:30 once this week and then wake up in the night several other nights, it's just that this is his "norm".  So no worsening of any of this is a very very good thing.

In terms of progress- do I think I see anything?  Kinda.  I say kinda because anything I may be seeing could be a sign of a "good week" also.  So some consistency will definitely be necessary before I will give memantine any credit.  Here is what I have observed- increased emotional lability.  Totally a double edged sword- I didn't think it was possible for his emotions to escalate any faster than they already do- I was wrong.  We have had a few tantrrums that came on much more quickly and were higher in intensity.  Bad.  However, I have also seen Jack cry tears of sadness- when I talked to him about our family friends who are going through something difficult he cried.  He has told me that I hurt his feelings.  When we correct or punish him he cries more frequently and tells us we're "being mean".  This is new, and I think it shows that he is experiencing more intense emotions and also some more appropriate reactions. 

The other thing that has happened- well I have had several extended conversations with Jack this week.  When I say conversation I mean back and forth, give and take, and NOT about one of his areas of interest.  I mean he told me more about his day at school yesterday than he ever has before.  I mean that when I told him he had OT this morning, he asked who would be with him and expressed disappointment that it would not be Miss Sam.  He has been asking me a multitude of questions about Nate as a baby, himself as a baby, asking where his friends live....nothing concrete, but just different than anything he has showed interest in before. 

And of course the sense of humor is still intact:
The other day he was in our bed first thing in the morning and he started in with "Natey is a baby".  Which he know aggravates me since Nate is of course 3, but behaves somewhat like a baby because of his lack of speech (I'm just a wee bit hypersensitive about this).  So I said, you know what Natey is, what is he?  Jack replied "he's a toddler, and guess what he'll be next?"  I replied, a kid?  He said "no, a quadruplet" and then laughed like a maniac.  So there is another positive- he's still Jack, no doubt about it. 

So I guess we just keep watching....