The Scoop on Nate- Latest Developments

First of all, to those of you who have donated to Nate's medical fund- I want to make sure I say thank you.  Some of you I don't even know, some I haven't spoken with since high school.  I can't begin to express how touched we are.  So here's what we know so far, I submitted all of the paperwork to take both boys to Dr. Usman; I decided it just made more sense to take them both at once, and plus, the last few posts that have been about Jack have made me really think about how much his life is impacted at this point- it's a lot.  I didn't hear back for quite awhile, so I emailed the office staff, who informed me that she hasn't gotten to our intake sheets (she will then decide if she will "accept" the boys- although when you have two kids with the same developmental diagnosis few practitioners can resist), but she also shared this pretty piece of news- new patients are currently being scheduled for spring of 2015.  Sigh.  I should have expected this.  It doesn't change my level of disappointment though.

So clearly, if you have met me you know that I am not one to sit twiddling my thumbs for one of the most important years of my child's development whilst "waiting" for an appointment.  Not going to happen.  I have been looking at other, more homeopathic treatments to try while we are waiting, and am very enthused about some options.  Maybe someday I will talk about this, but not right now.

About a week ago I decided to give Nathan a break from his diflucan and antibiotics.  He's been on them for two months with no break, and I worry about his little system.  Three days later I found him standing on his head (one of his major sensory seeking behaviors from when he was first diagnosed- we would find him this way in his crib).  Not a coincidence.  And further confirmation that an unbalanced gut and immune system are significant contributors to his behaviors.  This actually gives me hope though- that's the world I live in- I just want to know how to help him.  Even if it means confirming a new problem- who am I kidding, finding a solvable problem is a big victory.

He continues with school, speech, OT, Cisco Center, etc.  I think he is in a very good place with his therapies actually.  Working with Carla "officially" for speech (she was always "working" with him, just not one on one) is very beneficial for him.  Not only is she able to sit down and work on the methods that she employs during a session, but she is able to reinforce this on a daily basis when they are working in the classroom setting.  Consistency is key for these kiddos. 

Today he was playing with Carla a little bit right before we left- they were doing some singing and then peek a boo.  Nate literally said "I see you".  I heard it clear as day.  When these phrases pop out it's like winning the lottery.  The one unfortunate part of that is that recurrence is not likely (at least not in the near future).  But Carla pushes him- she is not afraid of pushing his limits, I think that is part of what makes her such an effective practitioner.  And even though Nate often ends up crying in frustration, he is always happy to see her the next day.  It's a great balance.  Anyway, Nate continues requesting things consistently at home- he will point to which cabinet the item he wants is kept in if verbal attempts are not effective.  I guess the point of this is that he is trying, he is really trying.  His repetition of familiar words also continues.  He is still working with PECS as well, but because of how much effort he is making verbally, it's hard to decide how much to use them.  I don't want him to get frustrated, but I don't want to take away the incentive to use words (since he seems to want to use them).  So we are finding our own balance, as I guess every family does.  He will say "watch" if he wants a program on TV.  We put on netflix and he walks over and points to the program he wants, and says "want".  This is great progress, especially since it doesn't involve his biggest motivator- food.  The other day, I was giving him a "grain free cookie" (don't judge, I am an awesome mom, lol), and I said "just one".  Swear to God the kid looked right at me and said "two".  Luckily John heard it too- so either I'm not crazy or we both are ha.

This is his last full week on the Aricept trial through NIH.  He will stop taking the medication next Friday night, at which time we will go through a battery of tests- developmental, blood, ecg, and a sleep study (only one night this time, thank GAWD).  Then they will follow up with us for the next year.  I have mixed emotions about stopping the medication.  His speech has definitely progressed in the last six months, and I do think that Aricept must have something to do with that.  On the other hand, we have been very consistently treating his yeast issues also.  The positive part of stopping the medication is that we are free to try other interventions.  I have held off on certain things because we didn't know if they would interact with Aricept.  So we shall see...either way, I would highly recommend NIH to any parent who is looking for cutting edge treatment for their child.  They have been an absolute pleasure to work with.  At least from mommy's perspective. 

Two Steps Forward, Twelve Steps Back

None of us ever wants to find out that something is actually working because we have to stop it.  Unfortunately, that is what has happened in our house these past few weeks.  Nathan’s mitochondrial cocktail was getting stickier and clumpier by the day.  I spoke with the pharmacist at the compounding center and he told me to take it out of the fridge.  I did so.  It got much much worse.  It was basically damp, smelled rank, and there was no way it was dissolving in any liquid because frankly it seemed saturated with liquid as it was.  I emailed my contact again, expecting to get another “tip”, but he responded, saying that he had just opened the new batch that he had made to ship to us and found the same issue.  He looked up each of the components in the cocktail and found that it was the L carnitine that was causing an issue- it tends to cling to moisture.  There were two options- take it out of the compound and give it separately (we already have it at home, as that is the one part of the cocktail he was already on) or attempt a liquid.  The liquid would need to be shipped every other week, making the copay double, and shipped on dry ice which is a $27 charge each go round.  Thus, we are trying the new powder.

The good/bad news is that we have noticed a significant difference in Nathan in the time he has been off of the compound.  His stimming is literally through the roof, and as a result we are getting fewer words as well.  He is pulling the hair off the dog, just to watch it float to the ground, and his fingers are constantly in front of his face for further stimulation.  He is ripping paper like a little fiend, and dangling the chain he creates in front of his face.  It’s hard to watch to be honest.  My other concern is that we finished the 3 courses of fluconazole to treat his yeast recently- so if the yeast is returning, that could cause the increase in these behaviors as well.  I picked him up from Cisco the other day and one of the employees commented on how “giggly” he was.  I had to rain on the person’s parade and let them know that when he is sitting by himself laughing uncontrollably, it’s usually a bad sign- could be yeast again.  So I am watching that closely as well.  Right now the priority is the cocktail, and if we don’t see improvement with that, I will call the developmental pediatrician about the fluconazole issue.

 

Another biggie- tomorrow is Nate’s D day.  He will be starting Aricept.  NIH has continued to be fabulous to work with, they overnighted the drug and we got it on Tuesday.  I am anxious to get going and nervous at the same time.  I can’t take another disappointment right now to be frank.  Watching Nate backslide these past few weeks has been hard enough.  Jack has been having a whole other set of issues, which I will address in a future post- preview- he doesn’t want to do his work, oh and he is pushing a girl.  A lot.   Should I be viewing this as social progress??? Mommy needs a sensory deprivation tank!

Nate's stimmy fingers yesterday....

Nate- New Interventions, Side Effects, and Hope

Just wanted to give you all a quick update on Nate.  He has been on his fluconazole and flagyl for approximately 10 days now, and the mitochondrial cocktail for 5 days.  He is taking all of these like a champ.  We have gotten very lucky in that regard as he has accepted them all in his juice.

Side effects, let’s see.  Sorry squeamish readers, but he is having REALLY stinky grainy loose stool.  This is a sign that the fluconazole may be working.  He also has been extremely stimmy, which is another sign of what is called “die-off”, basically a worsening of those symptoms because of the by-products of the yeast dying.  So it’s a negative thing that hopefully will lead to improvement in the long run.

As an added bonus, Nathan has not slept through the night since, umm, last Tuesday night I think?  He is my sleeper, so this really stinks.  This could be one of two things- more die-off symptoms, or something in the mitochondrial cocktail is having some effect.  Only time will tell if that is a positive or negative effect.  It could be “awakening” of some neural connections, or it could be that one of the supplements in the cocktail is very activating to him and cause some hyper stimulation.  We need to wait it out for now, as no matter what is going on, this side effect could be a transient one.  Or, if there are a lot of other more positive effects, this side effect could be helped with melatonin and may be worth dealing with.  Either way, when he is awake at night all he wants on earth is to be “squeezed”.  Arms, legs, feet, you name it, he wants deep pressure.  He has also been more fussy- possibly lack of sleep, but he also seems to be over-stimulated more easily.  He had a rough time at his grand mom’s house yesterday- lots of crying, didn’t eat a thing, grabbed my hand and led me to the front door (time to leave mom), etc. 

Have we seen anything really good?  John and I are saying this- Nathan is having a “good week”.  His speech, not necessarily increased, but definitely more consistent.  His little attitude is alive and well.  My dear John, devoted daddy that he is, continues to try for “night night” from Nate each night.  Tonight, he was leaning over Nate while he did this, giving him some deep pressure, and Nate pushed his leg onto John’s arm, smiled behind his thumb, and instead of night night, said “kick”.  Little stinkerJ.  Also, the other day, I handed him his juice and he just very casually said “thank you”.  These are definitely positive things.  And that is as far as I am willing to think right now.

I went through another phone interview with NIH today.  It made me cry, what else is new.  They were asking developmental questions for a good 30 minutes.  How often does he nod his head yes- never, how often does he wave- never, does he use at least 5 words a day- sometimes, how often does he respond to his name- sometimes, how often does he engage in imaginary play- never.  OK, so I have to admit that the interviewer made me laugh twice.  She would ask all of these serious questions to which she received pretty depressing answers, and then would wrap up the line of questioning (and in her defense she was clearly reading from a script) with something like “do you feel that Nathan uses the typical amount of language for a child his age?”  Or the kicker “have you ever had developmental concerns about Nathan?”  Seriously?  Nah- he's just introverted?!? 

So that’s where we are for now.  Mommy is finally getting a bit of relief from a migraine that was closing in on 6 days.  Which has been happening about 3 times a month the past few months.  I got a new migraine script today from my PCP and a referral to a neurologist.  In addition, after listening to all that has been going on she insisted on writing me a prescription for Xanax (HA).  She was like “and why do you not have this?  Like every day?”  That part was a bit of a joke, but she’s right, there are times when it’s just necessary and contrary to what I would like to believe, I am not wonder woman.  Just feel a bit sorry for the kids, because this mama is so drug naïve that if I take it at bedtime, it’s going to take a lot of noise to wake me up!  Anyway, hopefully this will help.

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.

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. 

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.

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? 

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. 

http://www.dominicsfarm.com/

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.

The Value of "Special Needs" Friends

Since the boys' diagnoses we have been very lucky in that the people who were really our friends before this have been supportive and we have been able to keep in touch.  My mommy friendships remain intact for the most part.   I can't say that Jack is really "friends" with his playgroup buddies of the past.  He does have a difficult time connecting with kids in the typical way.  He struggles with it, and it can be hard to watch, as I have mentioned in the past.  I have one friend from back in nursing school who makes an effort to have her daughter play with special needs kids- she wants her daughter to be an accepting person.  Granted, my friend is just an extraordinary person herself, but I appreciate her so so much.  She even came to the roar for autism event for Kennedy Krieger with us last year, heck, she suggested it. 

That being said, there is just something about having another special needs family to interact with.  An immediate feeling of acceptance.  There's no need to explain any of your kids' behaviors.  Even if they are different from the other child's, the parents get it.  I also enjoy TACA meetings for this reason- we talk about poop, poop smearing, spitting, biting, hitting, like we're talking about legos.  And I'm down with that. 

We are fortunate to have connected with the family of one of Nate's ABA classmates.  I think the mommies benefit from this more than anyone else, but I know that it does all of us a world of good to feel just a little less alone in this situation.  We went to a birthday party for this family over the weekend- just me and Jack since Nate was sick.  First of all, Jack was enthralled because we were on a military base- he came home and told John he saw soooo many planes all over the place.  Yeah, we didn't see any, but we all know where Jack's mind goes.  He was starstruck at the inspection station.  Anyway, I am always nervous to take Jack to a party- but a bit less so for this one.  I have always appreciated that some of our friends try to accomodate the boys' diets, as I am perfectly willing to bring our own little cooler, and have done so many times at this point.  I didn't need to do this for this party- but on top of that this mom BAKED gluten free cupcakes.  I don't do that!!!!  I go to a bakery. 

And here are the huge signs that your host knows what's up.  You get a message that you can bring your kids whenever (ie, early) in case they need some time to adjust to their surroundings.  No one bats an eye when, because he is excited, your kid starts flapping his arms.  The hosts ask if Jack will be ok with it before they blow up a big bounce house in the living room (he was thrilled).  Oh and here's a biggie, the host mom smiles like it's endearing when your kid screams because she uses the flash on her camera and tells her to stop that.  And you know that she is truly not annoyed.  Jack felt comfortable there- I could tell.  Who knows, maybe he was reacting to my lack of tension.  He played with other kids, he interacted with the adults (and demonstrated his vast knowledge of WWII aircraft), he ate an astounding number of rice krispie treats.  He did a pretty good job over all- no meltdowns, always a plus.  So this is my thank you to that family- for being so thoughtful and considerate.  It really did make a difference and Jack had a great time.  And what a sweet and polite birthday girl too!

Why Not?

I mentioned in my last post that I am trying some new interventions with the boys.  Before I tell you about our latest direction I feel the need to clarify my feelings on being an "autism mommy".  There are parents of children with autism that feel that their child's autism is a "gift".  I am not now nor will I ever be one of those parents.  I would never choose to see my boys struggle in the ways that they do.  Yes they have taught me much about life, and yes I am a much stronger person for having been their mommy.  I would never want these things over seeing my children thrive.  So I will continue to try new things- again and again and again.  Some of the benefits may not be evident to others- I am here to tell you that the baby steps matter. 

So on that note...I received a book in the mail from my aunt last week.  I have been continually amazed by the amount of support our family has received, and it has come from unexpected sources as well.  My aunt lives far away, we don't see her very often, and yet she has become one of my biggest cheerleaders in this experience and I was very touched to receive this gift.  The book focuses on Chinese Medicine.  It relates to the same principles applied in interventions such as acupuncture and acupressure.  As you may well know, these techniques have proven effective for many ailments, so much so that they are often covered by insurance. 

The book is about an intervention called Qigong massage- specifically QST or Qigong Sensory Training.  To explain a little further I will give you some brief information from the book:

Chinese medicine in general is based on the electromagnetic field around each person's body, and the circulation from the top of our head down the outside of our body to our hands and our feet and then back up inside the body to our heads again.  In any situation that involves illness or pain, Chinese medicine makes the diagnosis of a block in energy and circulation and the treatment will open up the block and restore circulation.  The theory is that in autism there are many blocks in the energy channels, especially in the areas where the senses open to the world around us.  This prevents the senses from working properly and the child can't receive accurate information about the world around them.  The massage is meant to remove these blocks and fill these channels.  The person giving the massage works from the top of the head to the toes-  to follow the proper flow of energy in the body. 

So this was very intriguing to me.  I took several alternative medicine classes in nursing school including a therapeutic touch class.  It served me well as an oncology nurse- I saw the effects and I believe in them.  I have also used the wilbarger brushing protocol on the boys- which was recommended by their OT and seen the effects of this.  To me, all of this must be interrelated, so I had no problem accepting this theory.  Also, I am inclined to try interventions that "do no harm".  Things like dietary changes, vitamins, etc.  Things with very limited negative effects.  I think massage counts? 

What's the worst that could happen in this situation?  The protocol calls for me to give each child the massage daily for 5 months.  It takes approximately 15-30 minutes for each child depending on their reactions.  OK, so even if it does nothing for their autism, it's one on one time each day with each child, it's eye contact, it's loving touch.  So worst case scenario- we bond even more?  I can handle that.

The book describes various reactions that indicate blockages and/or lack of energy in a particular area.  The child will shy away if there is a blockage, in which case I should use lighter, quicker touch.  If the area is not blocked but lacks energy, the child will put their hands over mine and push, aka, wanting me to hold more pressure in this area.  Got it.

So we started 3 days ago.  I was told to expect resistance at first, and I have definitely had some- I mean they have to stay somewhat still, and for Nate especially this is a challenge.  That being said, BOTH boys have grabbed my hands and held them to a particular area already- Jack to the top of his head and his ears, Nate to his ears.  Giggling also indicates lack of energy- Nate laughs like a fool when I massage his pinky finger.  Crying indicates a block- my ticklish little Nate sobs when I massage his toes.  It's just astounding.  Also, today, a mere three days in, Jack came running upstairs at bedtime, upset to have to turn off a movie, and he yelled "Mom, I need my massage NOW".  Really?  We weren't supposed to have that reaction for several weeks! 

So in any case, I am giving it the old college try.  Clear benefits exist- a stronger connection with my boys and them becoming less sensitive to touch in areas like their ears.  And of course massage is relaxing- both boys have almost fallen asleep already.  If the other effects of increased concentration, better sleep and improved speech occur, it will just be icing on the cake.  So really, why not?

The Magical Toy

Every parent of a child with autism is looking for it.  In our case, so is every grandparent and babysitter too.  That toy that will help the child break through- that will be so fascinating to the child that it will trigger some appropriate play. 

Let me try to qualify this.  Remember when your children were babies? That first Christmas where all they were really interested in was the wrapping paper, ribbons, and boxes?  I would die for Nathan to get to that point again.  This year he grabbed tissue over and over again from the top of one of John's gifts and shredded it.  Then he found one ribbon and shook that for awhile.  Completely ignored all the gifts.  For the most part he focused on putting 2 snowflake ornaments together and watching them dangle. 

Exhibit A

This is a very common issue in kids with autism.  Lack of "appropriate" play.  Sounds like a load of crap right?  Kind of like "failure to progress" in a labor and delivery situation?  It's not though.  Put a toy in front of a neurotypical kid and they might need a little guidance to figure it out, but the point is that the would be interested in doing so.  Put the same toy in front of a child with autism and who knows what you're gonna get.  With Nathan he would likely ignore it- his main interests are leaves, string, balloons, pine needles, toilet paper, and paper towels.  If you try to engage him in the toy he will cry and try to get away.  The only person I have seen truly engage him in play appropriately has been the educator who just started coming out to our home in December.  The one who is an "aide" on Mon and Tuesday and a kindergarten "advocate" for the school board the rest of the week (she has her master's and does the aide gig because she loves it).  The first time she visited, my mom, the sitter, and I were all observing.  We all would like to drink her blood or at the very least get an in depth tutorial.  Ooops, was that inappropriate?

If you put that same toy in front of Jack, especially when he was little, he would find a way to spin it.  If that wasn't happening, then he would turn it over and examine how it was put together.  Find the screws, etc.  We used to joke that clearly he would be an engineer- still wonder about that.  We spent about 9 months in weekly "play therapy" with Jack.  I will never forget it as it was one of our first therapies after his diagnosis.  We did OT on Saturday morning, and then I would drive Jack 45 minutes to this attorney's office where the child therapist held her Saturday hours.  She lugged a million toys with her every week.  I would watch her try and try again to get Jack to engage in imaginative play.  He did not want to make characters interact with each other.  Eventually she did help him do this- even if it was a cake and a banana talking to each other.  Hey, we're not picky here.  I used to stress so much about this "deficit" that Jack had- God it sounds so stinking minor now.  If this was the biggest issue with Nate we would be coasting right now. 

So back to the toys.  I am constantly on a crusade to find that "magical toy" for Nate.  In order to get him to do a puzzle I basically have to sit him in my lap and cross my legs over his- ie, restrain him.  To get him to pay attention to any toys, they have to be in his room, the door has to be closed, and there must be no other entertainment option for him.  If he engages with something for two minutes, it's a victory.  This is of course besides his beloved string.  He could do that for hours.  I have found myself on my hands and knees dangling a piece of string next to his in a desperate attempt to get him to notice me/interact with me.  It does work sometimes. 

We seriously should own stock in Melissa and Doug, Plan Toys, etc.  I think we might be missing about 10 Melissa and Doug toys from their collection.  And our family has been so so considerate in continuing this trend- every gift Nate received this year was something that would aid in his development.  Awesome.  We haven't opened over half of them, but we'll get to them.  I don't want to bombard him, I want him to focus.  After his birthday, I hit amazon again, hoping to find something he would really like.  I thought I had done that for his birthday, but came up with a big zero.  Not a flicker of interest in anything.  So I found these:

http://www.amazon.com/Plan-Toys-552301-Water-Blocks/dp/B0000663QL/ref=sr_1_1?s=toys-and-games&ie=UTF8&qid=1357175104&sr=1-1&keywords=plan+toys%2C+water+blocks

Nate LOVES movement- thus the string, etc.  He loves water.  He is the only kid I have ever seen that loves to have water poured over his head to rinse his hair during a bath.  Jack screams like a banchee and shakes his head like a dog.  Nate stands up, squeals, and moves closer.  So even though these blocks were almost 40 bucks, there were only 6, and I couldn't know if we would be successful, I went for it.  It is the only toy he has truly paid attention to from Christmas so far.

He loves to shake them and watch the water move.  He loves to look through them and see everything around him change color.  And occasionally I can sneak in a brief period of building.  Which is the key- the developmental play has to be "worked in" to what they want to do right?  Luckily, my efforts are rewarded with amazing moments like this.....

I Guess It Was Inevitable

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

I was finally able to pinpoint something that Nate really loves this year- so I took the idea and ran with it.  Really simple- balloons!  They were EVERYWHERE.  And Nate noticed right away this morning- I started hanging these balloon banners that I made and his eyes got so big. I really do feel like he knew that today was "about him", although he doesn't understand the whole birthday concept.  One thing that made me really proud this morning- big brother Jack gave Nate his gift, helped him open it, told him happy birthday and hugged him.  And Nate noticed the gift- a duck and goose book and stuffed duck and goose.  I have been working with Jack to help him understand a bit better the idea that he can give, he is not always going to be the receiver.  It's been a tough concept for him. 

The party went well, great group of people, all of whom really care about Natey and understand where he "is".  No surprised looks when he ran back and forth, collapsed on the floor, or stood on his head.  He did sneak to the treat table and snatch some stuff which tickled me- that meant he was paying attention to his surroundings.  I even took one of my first "risks" since the boys were diagnosed.  Nate has a little "buddy" from his old ABA class- which means they occasionally acknowledged each other's presence, and his mom and I have been in that Friday speech class together.  So I invited their family, which was a huge leap of faith for me.  Letting someone new into our lives- and I am so glad that I did.  They are new to the area, and have a special needs child, which must be a lonely place to be.  Such a nice family, and hopefully, some new friends.  Friends that understand fully what it's like to be raising our kids.  Jack did pretty well, other than a minor argument with a little girl over the Christmas tree lights- did great during the birthday song, as I had "tasked" him with helping Nate blow his candles out- not even a hint of a meltdown.  We did a simple craft, played with balloons (including those "punch" balloons- remember them?), and had cake.  It was a good time. 

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

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

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

Empowerment Through Acceptance

Accepting the limitations that autism brings is one of the hardest parts of dealing with the diagnosis.  That and wondering to what extent your child will be affected by them.  I remember that at about this time last year I was at a birthday party and a good friend of mine, who's daughter is slightly younger than Nate was there as well.  Her daughter was pointing to all of the animals on a board, naming them and making their sounds.  Honestly, I was so raw at that point that I wanted to curl up in a ball and die.  Nate was no longer saying mama.  This was probably one of the key moments that led to me isolating both myself and the boys from peers for awhile.  I couldn't handle having my kids around neurotypical kids.  Obviously my friends and their kids were doing absolutely nothing wrong- in fact they were incredibly supportive- it was the pure normalcy of it that I couldn't handle.  And it was such a different experience than the one I had the first time around.   Jack was a VERY early talker.  The other moms were amazed by him, I was proud, and at times I did have moments of smugness.  The joke was on me.  I have learned just how little my parenting had to do with Jack's speech development.  Not that reading to him didn't have a positive impact, but much of it was just how he was wired.  I never got why other parents were stressing so much about their child's lack of speech.  I figured, it'll come.  Oh man, that just makes me cringe now! 

I didn't think the pain of that would ever get any better.  I felt like I had lost too much, with both of the boys being affected by autism, to ever get to a place where I would be comfortable around our friends again.  Am I there now?  Not really.  But I have realized that I am on that path.  I am slowly able to "expose" (because that's how it feels) Nathan to more "normal" situations.  Was it him I was protecting in the past?  At the time I thought so.  Nope.  He most certainly didn't and doesn't notice other people's reactions to him.  It was for me.  Mommy couldn't handle it.  And you know what?  I think I had a right to that- I had to find my own way through this maze that is our life. But on Sunday, when I was at the farm with the boys and Nate was stimming, I could take a deep breath and accept that it was going to happen, that it was going to continue to happen, and it is ok.  Getting to this point opens up a whole new world to us.  Would I venture to take both boys to the mall by myself?  Ummm, no.  At least not by choice, or for "fun".  There are too many triggers, and they are different for each child- it's like a minefield.  But outdoor activities, small gatherings, playdates; I AM getting to a place where I can handle these as an autism parent.  I can hold my head high while watching my kids do his thing.  I can answer other parents' questions without becoming overtly defensive. 

I will NEVER fully accept my kids' limitations.  I will always be fighting to better their quality of life, to improve their functioning both at home and out in the world.  But I guess I now understand that there is a huge difference between acceptance and feeling defeated.  I can fight for them while appreciating who they are during the process.  Nathan is doing the most awesome thing this week.  Most parents would be absolutely thrilled by it themselves, when their baby is about one.  He has been saying mama again for awhile now, but this week it's like something clicked and he has realized it's my name, that I come when he says it, that it gives him some power.  I have never heard mama said this much...ever.  I love every single second of it.  If he is sitting in his booster eating lunch and he hears the click of my office door opening, he starts in right away, calling to me.  He sometimes comes to the office door when he gets home from school and just stands there saying it until I come out (it's not hard to convince me).  When I walk into his room in the morning to pick him up out of the crib he says my name.  This time last year, I was honestly afraid that I might never hear that word come out of his mouth again.  So now I can find my almost 3 year old saying "mama" completely fulfilling.  I look at the other kids in our social circle that are his age (there are I think 6 within 2 months of each other) and I can find their speech cute again.  I don't resent what I am missing with Nate- or not nearly as much.  My friend's little boy is about to turn 1- I am preparing myself mentally for his speech to surpass Nate's shortly.  It's not nearly as painful as I feared it would be.  As long as we are moving forward in some way, I am ok.  What a huge leap to make in a year!  In terms of empowerment- accepting where we are with Nate gives me the ability to fully reconnect with friends that have kids his age again, and as I mentioned above, it gives me the confidence to take him out with me more.  I can handle it emotionally when he has a sensory meltdown, or runs around with pine needles waving them in front of his face for an hour.  Our whole family has come a long way.  For instance, my mother in law took Jack to get a pumpkin at a farm a few weekends ago.  She brought a small pumpkin back for Nate, but she also brought an extra long weed that she found- perfect for Nate to wave till his little heart was content.  I almost cried, I was so touched.  She too is reaching that point.  My mom is constantly looking for opportunities to have therapeutic one-on-one time with him.  And daddy?  There just aren't words- he has become one of Nate's biggest cheerleaders.  All of the people who love Nate are getting there.  He must feel that right? 

#Autism is not Contagious- Come Closer Please!

It's the oddest thing.  I will be out with the boys somewhere and Nate will start stimming.  Some people smile at him, but others back away, clearly uncomfortable with this atypical behavior.  For the longest time his stimming didn't seem that out of place- he was still a baby- lots of babies do the whole total body stiffening thing- it's a sign that their neurological system is not fully mature.  But he is too old to brush it off as that anymore.  He is different- and it is obvious- from the monotonous sounds to the jerky movements, to the lack of speech. My little boy is different.  And even to the casual observer it is obvious.

 

This is also the case with Jack, although not to the same extent.  With Jack it's more like people are overwhelmed- he goes up to everyone (and I do mean everyone) and does his Wall-E impression or tells them about his 15 to 20 pet hermit crabs in great detail.  Note:  he does not have any pet hermit crabs, not one.  The usual chain of events goes like this:  Jack approaches person (almost always an adult), Jack starts talking, the adult acts interested for a minute, the adult realizes he is not going to stop talking.  An annoyed look replaces the previously open expression on their face, sometimes they even walk away.  I was given some cards by the receptionist at the boys' OT awhile back- I think they are from TACA.  They are called, "my child has autism" cards.  Here's the link:

http://www.tacanow.org/store/My-Child-Has-Autism-Cards-100/

I have never handed one out.  I have a hard time drawing even further attention to the boys.  I have been letting Jack go a bit more lately- he is starting to "get" it a bit more- social behavior I mean.  But when he is in a stressful or new situation he has a tendency to revert back to his old behaviors.  Which he did yesterday, when we took him to a fall festival at a farm.  Look who he had painted on his face.  Who did he show it to?  Describe it to?  Every single person he encountered, and some that he sought out.  Many people are very kind about it, some find him adorable.  Then the others....

I want to be clear.  Jack did a GREAT job at the farm yesterday.  He went on a tractor ride, he jumped on a trampoline, he played inside some playground tractors.  As always, reactions are just a bit more intense with him- if he likes something, it's LOVE, if he doesn't want to do something it is a meltdown.  There is very little gray area with him. 

I have definitely developed a thicker skin with respect to the boys and perceived reactions to them.  Even so, I am a very sensitive person.  I feel people's looks, I can sense those stares, the reactions.  It makes me feel incredibly protective of both boys.  Nathan sat for as long as we would let him yesterday playing with straw (waving it in front of his face).  I saw a few looks.  Yes some people noticed his odd behavior.   Probably way fewer people than what I think.  It's not like everyone is sitting there staring at my kid.  That's just how it feels :)

Confession time.  I used to be one of "those people".  I avoided kids that had disabilities- I never wanted to seem like I was staring, I felt awkward.  I am here to tell you that as a parent of special needs children, I would love for you to talk to my boys, to treat them like the wonderful little people that they are.  It's difficult I know- you don't want to say the wrong thing, you don't know what kind of interaction they are capable of.  So what?  Give it a try.  I don't want to have to hand out those cards.  I don't want to have to explain myself, or my children to anyone.  I want them to be accepted. And let's face it- according to the new research, it's 1 in 88 children that are affected by autism.  Until more effective treatments are found, or preventitive measures are taken (which would mean actually acknowledging the problems- not likely), this is not going away.  So try doing what I am learning to do- embrace it.  Don't push it away, don't turn away, don't make faces or act offended or annoyed.  Don't pretend you don't see either, I know better.  Ask me questions, ask my child questions.  I can't guarantee that they will answer, in fact, it's much more likely that they won't.  But I believe they hear everything, that they absorb and observe way more than they get credit for.  And the more that they see people trying to communicate with them, the more likely they are to try to reciprocate, right?  So come closer, talk to them, you might be surprised.