Sunday, 30 June 2013

Subtle Changes

I have been noticing some changes in Nathan the past few weeks.  I don't know what to make of them, and I don't want to make too much of them, but they are definitely there.  In the past, it was difficult to know what he liked and disliked, his expression didn't change much, he obviously couldn't verbally express himself (other than crying or screaming), and he certainly didn't have the obsessions his brother has. 

He has been expressing his emotions much more frequently the past few weeks.

Some prime examples:

We went to see a sensory friendly showing of "Monsters University" yesterday.  Before the movie started he was sitting in his seat looking happy as a little clam.  The instant the movie came on, he was clinging to me like his life depended on it.  He was terrified and overwhelmed by the noise and huge picture no doubt.  But he has been to several movies with us and never had this reaction.  Every time I even tried to turn him on my lap he went ape and would cling tighter. 

He is doing the same thing at home if a "scary" part of a show comes on.  He either runs and hides, or jumps on me.

Something scared him at my mom's today (we never figured out what it was), but we watched his later face go from happy to that crumpling expression, and then he sobbed for a minute and then it was over- weird.

This one is big to me- he was playing with his monkeys in a barrel at bedtime tonight.  He was stimming, swinging them around, getting very involved and was clearly not going to sleep if I let it continue.  So I said, "all done give to me" and he did.  I put them on top of the dresser.  He got MAD.  Not only did he cry and start tantruming, but he got on his tip toes and tried to reach them, when that didn't work, he attempted to climb on his toy box to get them, and when that didn't work, he grabbed his little work chair and tried to drag it over to the dresser, which didn't work either.  Eventually he did give up, but he showed way more tenacity over a toy than I have ever seen.

I think these are really good things.  Any determination, persistance, or show of emotion (which shows a different level of comprehension in my view) is progress. 

Saturday, 29 June 2013

What I Learned in Kindergarten

I haven't really written about the end of the school year for Jack, or expressed my thoughts about the over all experience this year so I thought I would take a few minutes to do that.

I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff.  Except I found what I consider to be a treasure.  The results of Jack's Assistive Technology Evaluation.

The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports.  He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed.  The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.

Well then, that's just AWESOME!!!!  Another school victory.

In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed.  Many people were talking "at" me and telling me "what my son needed".  And it wasn't much- it made me really nervous.  For his severe fine motor deficits he would have a pencil grip?  a slant board?  a lunch buddy?  That hardly seemed adequate.  The time with the special educator seemed very limited, OT assistance as well.  And no aid.  But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.

Man was I wrong.  Man were THEY wrong. 

It's often said that as a mom you are the expert on your child.  And of course this is true, there is no other human on earth who knows your child as well as you do.  I have fully accepted that for quite awhile now.  However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles.  I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles.   What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents.  Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed.  I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need.  Or at least, they don't get results.  I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made.  I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?"  That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions.  Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation".  There is a fundamental problem here- shouldn't the educators' recommendations be trusted?  Isn't that why they are there?  Because they are able to assess these things?  Apparently not.

To many of you who have children older than mine, this is likely old hat.  However I have made several friends and have plenty of readers who have much younger children with autism.  To you I say this- learn from my mistakes and misconceptions.  In every area of life YOU are the expert on your child.  Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it.  Demand it.  Because it is not just what your child deserves, it is their RIGHT. 

Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator.   He would not be in speech.  He would not have been evaluated by the alternative technology team.  I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations.  That being said, they weren't even planning on doing either the speech or assistive technology evaluations.  But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday.  I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write.  You can't force that, you just can't.

I am not trying to toot my own horn, I am by no means an IEP expert.  I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey.  Sometimes I can't believe how far we have come this year.  When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed.  Not half bad for a year's work!!

Thursday, 27 June 2013

The Autism Study Fiasco

What a day!!  We just returned from Children's National Medical Center and yet another study visit for Jack. How we ended up there was quite the process...

We were originally scheduled to come in July 3rd since we were just there June 19th. Then I got a phone call last Friday evening from the coordinator saying that the arm of the study that Jack has been on was suddenly closing and he had to progress to the next phase.  The phase that he was in involved a short period of being on memantine and then another period where he would be randomized and either receive the drug or a placebo.  From the beginning, this seemed like a cruel way to go about things, although I get it in theory.  The drug company wanted to make sure that any improvements were really due to the drug.  That being said, imagine how hard it would be for the child and their parents if they improved and then regressed again (ie, went to placebo).  Apparently the drug company had enough instances of this occurring that they decided to stop this portion of the study and progress to all children receiving the medication at all times.  And they decided to do this suddenly- last Friday.  And told the study coordinators at all facilities that they must bring in all subjects this week and progress them.  This meant a two hour visit for each patient- blood work, urine test, ekg, IQ test, parent questionnaires, the works.  You can imagine their stress over trying to get everyone in during the required time frame.

I told the study nurse that I could NOT miss any work this week after missing already last week for this study.  So she made the appt for 5:30 pm today.  I cancelled Jack's usual OT appointment and arranged for John to pick Nathan up from Cisco Center and take him to his OT appt and we were good to go, or so I thought. 

At about 2:30 this afternoon I received a call from the nurse who stated that because they were seeing every single study patient this week they unexpectedly ran out of the medication.  Could we please come on July 3rd after all?  Well, by this time, I had agreed to cover for my coworker on the 3rd, so now I was stressed about that.  So I found someone to cover both of our caseloads for about 2 hours that day, phew.  Then I called to try and rebook Jack's OT appointment for this evening but they had already filled the spot.  Well crap.  At least I got to pick Nate up from Cisco Center after all.  Jack and I sat there leisurely watching the "food portion" of the afternoon, where the caregivers work on making the children request and try new foods in exchange for a few bites of their favorite food.  We stayed for a good half hour, until about 4:45.  I got the boys into the car and like all of us ridiculously connected people, checked my phone.  Voice mail from Children's.  Sigh.  They got more medication, can we please come after all- like, now?  Well, our appt was at 5:30, in DC, and it was rush hour, plus, now I had Nathan and John wasn't going to make it back to our house until about 5:15 with traffic....however I decided that the acrobatics of managing all of this were still better than the alternative (going on the 3rd).  So I got the kids food at a drive thru, sat in our driveway and fed them, and when John pulled in to the driveway thrust Nathan at him and headed out for Children's.  We made it by 6:10.  I am pretty proud of that time.  Unfortunately, phlebotomy leaves for the day at 6, so the psychiatrist drew Jack's blood- yep, you read that correctly.  Two sticks (not bad considering how infrequently she likely does this) and a HUGE hematoma.  I will say this, it's times like these when I realize that we really are raising a very nice little boy.  Poor Jack was trying to think of the meanest, most shocking thing he could say when they were doing the second stick and the worst he could come up with was "nah nah nah nah you can't get me!".  We were all dying trying not to laugh.  And he laid perfectly still for his ekg too, only needed one attempt which is pretty darned good for a little kid.  AND he sat for an IQ test- all bets are off on how well he did at almost 8pm, but still, he did it.

So everything is taken care of, and we don't have to go back for a few weeks now (supposedly).  This study has turned into a real pain in the bleep.  I feel like we have been to Children's pretty much every week, which is NOT the frequency that was portrayed to us in the beginning.  It would be easier to tolerate if I was seeing big changes from the medication, but I am really not seeing any difference at all.  He did, however, weight 19.6 kg today, so he only needs to gain another 0.4kg and then they can double his dose.  So I am hanging on to that.  I was told tonight that we only have 3 more appts that are every other week, and then it will only be every 6 weeks.  I. am. ready.

Milk of Human Kindness


Life is full of surprises.  I was running late this morning, feeling distracted, planning every moment of my day in my head (when can I fit in a run?  what time do I need to leave to get Jack to DC for his study appt at 5:30?), the usual.  John has been taking Jack to camp on his way to work and I take Nate to Cisco.  Nate was having a hard time separating this morning (ok, I am lying, I was having a rough time because I likely won't see him again today) so we were snuggling in the entryway of Cisco Center when Cisco called from his office that he had some good news for us.  I figured he had heard back on one of the grants we applied for or something.  Instead he tells me that they received an anonymous donation for Nathan that will cover a full week of his tuition.  I cannot put into words how this affected me.  I still cannot stop crying.   This donation directly improves this beautiful little boy's quality of life.  We do everything we can as a family to provide for our boys, but of course it is really tough to manage all of the services they both need.  We have made Cisco Center a priority because Nathan is really, really thriving there.  We made the decision that the sacrifices involved in sending him there are worth it, although they are many.  He is happy to go every single day.

Whoever you are, thank you from the bottom of my heart.  There is nothing on this earth that you could do that would touch my heart more.  Anything you do for Nathan you do for our entire family, so we ALL thank you.  I promise you that Nathan will truly benefit from your kindness.  I understand that you want to remain anonymous and though this is difficult for me as I would love to thank you personally, I of course respect that.  Your request for anonymity is just further evidence of what a generous soul you are.

Talk about a beautiful start to a day....

Wednesday, 26 June 2013

A Little Makeover

Hey, I reached 1000 twitter followers today!  In honor of this milestone, I decided to give the blog a little makeover- hope you like it!!

Accomplishments Only An Autism Parent Could Love.....

Us Autism parents develop crackhead senses of humor, it's just necessity.  The "new normal" is not just a catch phrase, it is truly a way of life, and let me tell you, as an autism parent, if you don't find your way to this place, you're gonna be pretty miserable.  Normal developmental milestones just don't apply, so you kind of create your own.  We have had a few lately that have been particularly ridiculous so I thought I would share here...
Here are some things that John and I are proud of that may make you shake your head...

1.  Jack is obsessed with hunting and guns right now.  The gun thing drives us both crazy- and he doesn't even own any!  However he turns sticks, golf clubs, mechanical robot arms, and large bubble wands into guns- he also made me build a robot gun out of his gears set this past weekend- this is amazing pretend play, so whoohoo!!!

2.  Nathan is developing a very jealous/possessive streak when it comes to mama.  Jack cannot sit on the opposite end of the couch from me without Nathan screaming because he doesn't want him that close to me.  He walks over and smacks him.  On the plus side- they are interacting!!!!! AND- Nate is communicating!

3.  I mentioned the potty training debacle with Nathan the other night, the fact that he umm, pooped on the floor.  John was downstairs while this was going on and all he heard was cheering.  He knew we were trying the potty and he came running upstairs to celebrate the success, so you can imagine his surprise when he walked into a poop filled room.  He looked at me like, umm, WHAT are you cheering about???  The answer- some pee got in the potty AND he didn't smear the poop!

4.  John and I were outside the other night when John looked up and saw Nathan in our bedroom window.  Which is over our bed.  And this was after bedtime.  He was standing there pouring water from my water glass onto my pillow.  We were tickled pink.  Hey, he opened the door all by himself!  We love ALL developmental milestones around here!

5.  Jack came home from being out with a family member who gave him contraband ice cream the other night (he is still dairy free).  He puked in the bathtub- thank God; because after he got rid of the dairy we avoided the usual resulting hyperactivity and he slept through the night.

6. I am secretly thrilled every time Nathan throws a temper tantrum- he knows what he wants, and he is passionate enough about it to make his feelings really well known.  We are ecstatic with any and all communication attempts, even if they involve him screaming hysterically, throwing himself on the ground and yelling "bad, bad, bad" for good measure

And now some visual accomplishments:

7.  They are sitting near each other- and Jack isn't trying to sit on him; and Nate isn't hitting Jack! All parents can appreciate this to some extent, however, in my boys' case, this has happened maybe 4 times- like, ever

8.  Jack saw this crab on his school field trip.  He was able to walk away from it without having a meltdown.  He told every single person he saw for the rest of the day ALL about it, but he did not have a meltdown.  I cannot state more emphatically how huge this was for Jack.  Score!

9.  This one serves a double duty- he let me cut his hair.  AND he's looking at the camera!!!!  Huge accomplishment for a kiddo with autism on both counts.

10.  Nate uses an app called "choice board" on the IPAD.  He is now choosing several items correctly when he wants them (he touches them, they enlarge on the screen, he touches them again and my voice says the word- that's his way of asking for something- and food is the main motivator for him)

Is it all complete and utter CRAP??? Absofreakinglutely!  Do I care?  If he asks appropriately for these things?  Nope.  That's right, I will let my kid eaten gluten and dairy free JUNK if he communicates with me.  Hearing my own voice say "chip" is music to my ears. 

The funniest part of all of this to me is that these sound like perfectly normal things to be proud of now.  The first time Jack smeared poop when he was a little over 2 years old I thought I would DIE.  Now if Nate does it, I sigh, grab the lysol wipes and investigate just how far he got in the process without missing a beat.  John's job is to toss him in the shower and squirt soap in his general vicinity.  Hey, it's teamwork.

Saturday, 22 June 2013

Well Played Nathan

I know, 3 posts in 24 hours.  But my last few posts have been a little bummy, so I wanted to share a ridiculous experience I had tonight with my little guy.  I have been mentioning how frustrated I have been with Nate's lack of speech development, and I decided today to try to focus on other aspects of Nathan's development for awhile, kind of take the pressure off.  I put a few new pictures on his choice board app on the ipad and he chose them appropriately when he wanted them, so that was encouraging.

I decided to try something a little crazy right before bed tonight.  I have been told by multiple doctors, teachers, and other professionals that potty training is just not a priority for Nate right now.  His comprehension is way behind, so it's hard to know if he would even understand what we are asking of him, let alone to know if he has the physical control to actually do it.  But I decided to say screw it.  So I took him up to the bathroom, whipped out the training potty, stripped him down, shut the door and waited.

I remember this experience well from Jack.  Ya sit, ya wait for the pee to start, grab em, throw em on the toilet and cheer like a maniac.  Got it.  I had the tub water trickling to speed things along and Nate was loving putting his hands in the water.  I heard a couple little toots but thought nothing of it.

Yeah, I kind of ruined the surprise just then huh?  In my defense, despite the fact that I am "experienced" in potty training (whatever that means), getting Jack to go #2 in the potty was one of the most challenging things I have ever done.  He holds it forever due to sensory issues and has had some problems with constipation.  Apparently Nathan is opposite of Jack in all areas.

Yep, number 2, on the floor, like nothing was happening.  I grabbed Nate as fast as I could and plopped him on the potty, mainly to minimize the mess.  Unfortunately this actually made it much, much worse.  So I was frantically trying to clean up before Nate stepped in something when I heard a couple of little drips.  I turned around and Nate was peeing in the potty!!!  Leave it to him to first create a major distraction so he could try it out in peace, lol.  I am just glad I caught it so I could cheer like a freak.  So all was not lost.  I have no idea if he got it, he did seem happy with himself, but only time will tell.  But I figure we can just try it this way for a while, no pressure.

However, mommy needs to pay more attention to other, ahem, warning signs from now on!

Passed Over

You know, our family has just been through (and made it through, I might add), an awful lot of stress in the past several years.  Between the boys' diagnoses, our marital issues, financial issues, and some other really inappropriate offenses that transpired, we have had our fill of yuckiness.  I think so at least.

It is hard to focus on life and the mundane sometimes when these big picture issues are in the way.  That being said, I think me and my spouse have done an admirable job of doing so.  Neither of us has had to take ONE day of FMLA despite all of the appointments we have for the boys and chronic health issues that my husband deals with.  We have not taken extended periods of time off.  We have used vacation and sick time for every single absence and have thus not had the opportunity to take real vacation time in years.  Still we get by. 

There are certain things there to encourage us, family relationships, friendships.  Strong work relationships and trust are also a huge part of this.  I have several coworkers who know just about everything about our struggles.  They know when I am running someone to an appointment, or going to an IEP meeting, or on a call with a doctor, and they cover for me as needed, because that is what good coworkers do.  I do the same for them when a child is born into their family, or they go on trips, or they get sick.  I know this is "standard" in the work place, but I am talking about certain people that really have my back.  When the boys were first diagnosed I didn't feel very comfortable about my job situation.  What if I lost my job because of absences? What if I no longer got raises or bonuses?  What if I missed out on a promotion because of the effects that my two children with autism could have on my work performance?? 

Frankly, at this point in my life, with all I try to accomplish on a day to day basis, including taking the boys to 90% of their appointments, driving them to daycare/camp/school daily and taking most of my sick days for their illnesses, a promotion is just about the furthest thing from my mind.  I do think it is something interesting to ponder though.  How many autism parents miss out on opportunities due to their more than standard obligations to their children?  I do not think that would happen to me in my current workplace.   That being said, if I felt like I was passed over due to my or my children's health issues I would be livid. And frankly I have a feeling that it happens way more often than anyone is willing to admit.  Of course this could never be publicly acknowledged, as it would be considered prejudicial, and thus illegal.  Of course it would never be discussed, other than in very veiled terms.  Like an "attendance issue".  Or just a "very difficult decision" that was impossible to make.  Does that change how this person, who has worked very hard, twice as hard as the next guy due to all of the challenges in their life, feels about being passed over?  No, they know the truth. 

I can truthfully say that my job performance, even with two children with autism, is excellent.  I know that I do the best I can for my patients every single day.  I know my patients like me and seek me out because they consider me a "go getter".  I know that my husband has the same experience at his job, where outside clients and coworkers seek him out on a regular basis because of his expertise and willingness to help.  For both of us, when we are working, we are WORKING.  And when we have obligations to our children, we're not there.  The only difference between us and others is that when we're gone, we're not at the beach! 

Respect your coworkers who have children with autism.  If YOU think the job is tough some days, imagine how your coworker is struggling after being up with a kid all night due to his obsession with a BUBBLE WAND.  True story. 

Treading Water

As we enter summer "vacation", my main focus has been on finding places for the boys to be while I work, making sure they're taken care of, and trying to afford it all.  I am revisiting some old supplements that I don't feel like I tried for long enough and reading about some new ones.  My autism book stack is getting higher by the day. 

I read and read and pray that one day I am going to find that magical solution for Nate.  That some day he is just going to open up his mouth and start talking.  That the stimming will calm and I'll be able to talk to him like any other kid.  There is so much going on in there, it just feels like everything he wants to say is trapped.  I don't know what more I can do for him right now.  So I guess I am feeling trapped too.  And inadequate as usual.  I am watching babies born almost two years after him pass him by verbally.  And while it hurts, I marvel at their development.  I know their parents are thankful for it, but do they get just how much of a miracle it is?  It's something I appreciate seeing more than I can express.

I am trying to rally myself for another round of searching.  And implementing.  Sometimes I am just so damned tired with just what we are already doing.  And yet I feel that same sense of panic creeping in that I am not "figuring this out."  I mean, what if there is nothing to figure out?  What if this is just the way it's going to be?  That thought terrifies me.  And it's one that I am trying to reconcile myself to, just in case. 

In the meantime, I guess we really are just treading water.  Surviving, doing a lot of running around, going to appointments, smiling and saying the kids are doing well, and coming home at the end of the day, collapsing, and feeling discouraged.  It's a dance we have honed over time, we are getting pretty good at it.

Monday, 17 June 2013

Who Knew That a Pain in my A** Could Lead to a New Autism Theory to Research??

Yeah, that probably doesn't make much sense.  So I'll start at the beginning.  I have this tendency to move heavy things.  By myself.  My husband has a truly bad back, and if I wait and ask for his help, well, he helps me, and then he is in massive pain.  So I do it by myself.  You know, things like, ummm, moving elliptical machines from the house to the garage, and moving play kitchens into the rafters in the garage.  Just little stuff like that, ha.  Stupid yes, but I like to think of it as loving stupidity.About 6-8 weeks ago I started having major lower back pain on the right side. I suspect this started right after one of these hauling "incidents" but honestly can't pinpoint one.  Anyway, it's gotten worse as time has gone on, no doubt because I still lift Nate way too much.  The simple act of twisting to put him in his carseat has become excruciating.

Over the past week, John has heard me repeatedly yelp "ouch", when I appear to be sitting perfectly still.  Turning my head hurts my lower back.  I have been scrunching my way out of bed like I did when I was 9 months pregnant.  Putting on my pants with one arm because it hurts too much to turn my body in the other direction.  I think my breaking point was when I was driving the car and yelped when I pushed my foot down on the gas pedal.  That sh** hurt!!!

The good news is that I decided to do something about it.  I called a chiropractor, and went to see him for the first time this morning.  I was worried sick to be honest.  I don't like the idea of my back "cracking" even if it is scientifically proven to be effective.  I made the chiropractor aware of this fear immediately and he went pretty slowly (I think, remember, first time).  Parts of the session were pretty painful, but over all it wasn't too bad.  He asked what "I did to myself" and I told him I thought that part of the problem was carrying my 3 year old around too much.  He started lecturing me about the fact that my kid can walk perfectly well at this age.  At that point if occurred to me that one of the main reasons that I am still carrying him this much is because I feel very protective of him.  I expressed that to the chiropractor and explained that Nate has moderate to severe autism.

Something you may have realized by now (I'm hoping) is that there is no definitive treatment for autism.  Every modality has their thoughts on autism and what "needs" to be done.  Turns out chiropractors are no different.  This chiropractor has been studying the work of "brain balance" centers throughout the US.  This type of practice was started and written about by a Dr. Melillo who is a chiropractic neurologist.  Mouthful right?  The chiropractor who was working on my back said that he could actually deal with most of my lower back pain with eye exercises, because it's all about brain balance.  He said it would take a few more sessions than traditional chiropractics, so I wasn't biting, haha.  A little more general info

The whole theory behind this type of practice is that in autistic children there is an imbalance in the way the two hemispheres of the brain function and thus they do not communicate with each other well.  The therapies work on balancing this out, and involve many exercises. But they also involve many nutritional interventions as well such as gluten and casein free diets, and the use of supplements.  What?  How bout that.  Seems like everyone is kind of moving in the same general direction, and that is pretty hopeful.
Here is the main site for this program:

Their explanation of the problem:
Understanding the Underlying Problem
A properly functioning brain communicates between both hemispheres as well as within each hemisphere at lightning speed. Think of these communications like runners in a relay race: They connect, pass on information, and release, repeating this process millions of times a minute. In a poorly functioning brain, these runners are often out of sync, missing each other or passing on only partial information. This miscommunication is called Functional Disconnection and is at the root of all types of neurobehavioral and learning problems.

There are centers in Delaware and Pennsylvania and home treatment programs are available even though they prefer to have their patients come in approximately 3x a week.  The assessments are less expensive than those at a MAPS (or DAN) doctor.  I don't know quite how I feel about it just yet, but I do think it's worth reading more about. 

Here is the main book:

So I guess I am adding that to the pile :-)

Everywhere I go, people are offering suggestions on how to help my kids.  Many times I want to throttle these people (set more limits for your child, just don't give it to him until he says it- umm, we would still be standing there NOW you do realize that??), but sometimes, like today, someone offers a thought that might be useful.  And since I need to go back several more times at least (seriously my back is a MESS) I am hoping to ask a bunch more questions.

Friday, 14 June 2013

Worth It

You know, when I signed Nathan up for Cisco Center initially, it was because I needed daycare, and because they were a special needs facility.  And Nathan liked it fine, he was always ready to come home in the evenings, but I think that's a good thing.  Everyone seemed nice, and I have been happy with my decision so far.

For the past week, Nathan has been going to Cisco for full days as his ECI class is out until extended school year starts on July 8th.  I have been very stressed out about the money- it costs $500 a week to send a child there full time.  And as I expressed to Cisco, who runs the center today, I get why it costs that much.  My child needs more individualized attention, he needs sensory stimulation, he needs many accomodations.  I mean, how many places have multiple swings upstairs, and an OT and speech therapist on staff?  Cisco Center is also meant to be more of a school than a daycare, so that also justifies the cost. They have a curriculum, and they have weekly themes.  I know that when Nate comes home with sand in his hair it's beach week!  It's just that constant dilemma of special needs children needing so many things, and these things being more expensive, because, well, they need to be.  It is going to be very difficult to keep Nate in this situation for the summer.  I have applied for grants, but won't know the outcome until probably August.  Today Cisco suggested sponsorship, asking people to sponsor Nate for a certain amount each month- it's a tax deductible/donation type situation.  But while it sounds like a great idea in theory, everyone has expenses and I just don't think it's very realistic right now. 

Here is what I know.  He LOVES it there.  John and I are both pretty sure that he was trying to say cisco this morning multiple times, and at one point we heard "fun" in there too.  Yes, this is the morning after I was talking about his regression.  I know.  Almost every day I pick him up he is soaking wet (with water)- at first I was like, what??  But really this is because they are providing him with the sensory play that he craves and needs- outdoor water play.  I know how Nate is- came downstairs from putting him to bed tonight and found my water glass on it's side and water all over the floor.  I didn't wonder for one second how that happened- he's my water boy, loves to watch water pour, move, drip.  It's a visual stim for him.  They made "donuts for dads" this week.  When I dropped Nate off this morning, he walked right over, sat at the table and was given the task of "shaker"- shaking the cooked donuts in a bag of powdered sugar to coat them.  And the bag was labeled "gluten free", so he only had contact with the gluten free donuts.

And these are just the benefits for him.  Last Friday he and I attended the end of year party at the center.  I met many of the parents of the kids in Nate's ECI classroom.  Made connections that will likely be very important for him and for me.  Connections with other moms that are walking in shoes very similar to mine. 

Cisco contacted myself and several parents a few weeks ago asking us if we would be interested in testing a communication app for children with autism.  The software developer had contacted him, I am guessng because it is a designated special needs center.  The requirement to do the testing was to have an ipad, so I said sure.  Unfortunately, it needed to be an ipad2 or newer, and ours is a 1 (which is perfectly fine for most of the apps we use) so I told him we were out.  Then the developer comes back and says he will loan me a new ipad with retina scan while we are working with the software and then donate it to Cisco center.  Several moms and I spent about an hour and a half walking through the app today (it's not on the market at all yet), not just learning how to use it, but offering the developer suggestions on how it could be made more user friendly and relevant for our children.  It was pretty cool. The other cool thing was that when I started offering suggestions, the other moms were nodding their heads and agreeing. For instance, there were about 200 possible things a child could find and touch in order to communicate their needs.  I was sitting there thinking that this was way too much for Nate to sort through right now, that he needed one screen of maybe 10 things at most.  When the other moms agreed, it made me realize that in this center, Nate is not "the most behind".  He is truly with peers.  And that's a very unique thing to find a mile from your house! 

So somehow, we are going to make this happen for the summer.  Don't get me wrong, if the grants come through, our net cost will not be horrible, it's just the upfront cost that is getting us.  But....I have never seen Nate excited to go somewhere before.  I have not seen him in a situation where he really seems to belong before.  As a parent of a special needs child, this is priceless. 

Thursday, 13 June 2013


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. 

Friday, 7 June 2013

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

Thursday, 6 June 2013

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.....

Wednesday, 5 June 2013

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:

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.

Tuesday, 4 June 2013

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!

Monday, 3 June 2013

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:

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.

Saturday, 1 June 2013

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....