A Gift

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

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

Halloween with Nathan in the past has been hellish.  His first Halloween was fine (other than another upper respiratory infection and a considerable number of nebs that day).  

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

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

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

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

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

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

High Functioning Autism: Yes Jack Can Speak, But He Struggles In Many Other Ways

My friend Joann and I have talked about this several times lately- the fact that parenting Jack is infinitely more difficult than parenting Nathan.  It doesn’t make intuitive sense.  Nathan is clearly way more affected by autism than Jack, or to an outsider, it may seem that way.  Honestly, I don’t think it’s so.  I think Jack’s life is impacted severely by his autism.  As he gets older, it’s getting harder and harder to watch.

The issues that Jack faces are considerable, but of course when one looks at the fact that Nate cannot yet communicate well, that he is so impacted every second of every day, and Jack is in mainstream first grade, it may not seem that way. 

I want to make it clear that I am extremely proud of my boy- he was recently “dismissed” from his special needs reading group, which mean he has caught up to his grade level- how huge is that?  Especially for Jack.  I talk about all of the “noise” that there seems to be for Nate, how many distractions there are in his own little head.  The same is fully true for Jack.  When John and I went away for a night last year it hit us just how quiet our hotel room was- that is because both of the boys almost continuously hum.  It’s verbal stimming.  Jack also does quite a bit of physical stimming- jerky movements, still some flapping of his arms, lots of jumping.  I’ve grown so used to it, that I forget how significant it is until we are out in public.  Do you ever wonder what your child must be feeling?  What compels them to do this?  I know they are seeking input, but I often wonder what that experience is like. 

Jack’s obsessions have driven me crazy for a long time.  When he talks about something, he TALKS about it- ALL THE TIME.  24/7, it never, never, ever stops.  He repeats the same things, lines of text or quotes from movies about the subject over and over again and then, since he is smart enough to know that you might tune him out, he requires you to respond to him.  He will repeat the same thing in your face over and over and over until you respond.  For a long time, it felt like John and I had lost our bond, because when we finally got Jack to sleep each night, we fled to separate corners of the house, really didn’t interact much at all.  It’s taken a long time, and lots of counseling and reflection for me to realize that we are running to opposite ends of the house because we literally don’t want to hear ANYONE talk.  Our ears are ringing.  RINGING.  It is that intense, almost all of the time with Jack. 

When someone new meets Jack, you can literally watch the progression.  It starts with “wow, he really knows a lot about blank, he must be really smart”.  Then a few minutes in, there is the amused smile.  Fast forward a few more minutes and the smile is frozen on the person’s face.  This is not to say that they don’t like Jack, but that they realize he is not going to stop.  And he doesn’t.  I can redirect him a million times; it has little to no effect.  It is really, really hard.  And the thing is- he is not being naughty.  He is rarely naughty.  How do you scold a child for something that they cannot control?

This impacts Jack’s life and well-being greatly.  He is happy in his world, I think.  But the more and more I watch him, the more it breaks my heart.  How must this feel?  To feel literally incapable of thinking about anything else?  To be this compelled to talk about the same thing, use the same words, over and over, to never feel satisfied or done?  If his words are this intense, how intense are his thoughts?  I don’t think I could tolerate living that way. 

And he is, Jack is living with this, and is in mainstream first grade.  It causes many issues for him.  He has a full-time aide to help keep him on task; this includes his walk to and from the bus.  He struggles to complete his work and quite often doesn’t. 

And socially?  He has been invited to two birthday parties all year.  One party was for a little boy he met as Cisco Center last summer, one for an old friend of mine’s daughter. So, in fact he has been invited to no birthday parties by kids at school.  He told me for weeks that one little boy was his best friend at school, but then in a moment of conversation, when he was really sharing with me he said that the boy told him that he sometimes likes him, but that he won’t invite him to his birthday.  Broke my heart.  He does not recognize these social “snubs” for what they are, but I do.  And I want to help him, but how?  I work full-time- I wish I could be in the classroom volunteering and keeping an eye on how things are going from a social perspective, but I can’t.  I wish I could be that mom that has time for play dates on a regular basis, but I’m not.  Most of my friends at this point are in the special needs community, which makes perfect sense considering our situation, but those are the main people who we socialize with on the weekends.  I mean, Nate has a birthday party to go to at least once or twice a month, because ALL of the families at his school are special needs families and we all invite all the kids- because we know what it’s like not to be invited.  It’s because Jack is with typical kids when he is in fact, not typical, that he struggles in this way.  He may not feel the impact now, but at some point, I am sure he will. 

So even though Jack is functioning, with assistance, in mainstream school, his struggles are many and significant.  I sometimes get caught up in worrying about Nate and lose sight of this, so I guess I am giving myself a bit of a wake-up call here.  It is so hard to strike a balance with these two kiddos with such different, yet substantial issues. 

A Typical Car Ride

When you have two kiddos with autism- each with extremely different sensory needs, a simple task like taking a ride in the car can turn into quite the adventure.  Read:  nerve jangling disaster.

The car issues all started right after Nate was born- Jack was about two and a half and almost immediately after I brought Nate home Jack started screaming bloody murder every single time I turned on the turn signal.  How many three year olds become conditioned to, instead of screaming, say “mommy is a law abiding citizen” when mommy turns on the turn signal?  It was the only work around I could think of at the time.

He also went through a period where if I drove past a large group of trees or anything else that generated shade, he would have a complete meltdown about the shadows in the car.  As though I can control that?  And the radio issue continues- it must be turned off before we pull into the driveway or all Hell breaks loose.  And he can tolerate a very short playlist of songs- he used to scream about this as well, but we have worked on him simply saying “skip” if the music is bothering him. 

This doesn’t even cover the whole “driving” thing.  I can’t turn corners unless I do so very slowly or he screams, can’t drive behind certain cars, or let alone buses.  If we are caught in traffic he yells “we’re still moving!!!!”  Speed bumps- they’re bad news.  Jack shouts every time we go over one.  He also notices immediately if I take a different route than usual and this upsets him quite a bit.  I get that he is not doing this to be difficult and feel really bad that he experiences these things so intensely.  I’m just saying- it makes for interesting driving.

Thus far in life, Mr. Nate has been very straight forward.  He cries for one reason when we are in the car- if we stop.  Recently he seems to be noticing this quite a bit more.  In the last week it has escalated, and it’s pretty darn cute.  He sits in the back seat and if I stop or even slow down he yells “go, go, go!!!”  I feel like a sled dog, he may as well shout “mush! Mush!”

Honestly, I try to speed up when he does this, or pray for the green light.  I want him to feel empowered when he makes the effort to communicate with me.  In the mean time between my two kids I am starting to question who is actually driving this car….

Autism, Eating Out, and Friends

As autism parents and parents in general, we all have our own personal fears, things we avoid.  My biggie since diagnosis (and John’s too unfortunately) is taking the kids out.  They are so stinking unpredictable- Jack’s meltdowns have become less frequent but when they happen, look out!  And Nate is fine….until he’s not, and once again, look out!  When the boys were first diagnosed we had a string of rotten experiences taking the boys places- now granted at the time we had not stopped to weed through what was appropriate to expect the boys to handle given the circumstances.  We were trying to “soldier on” and go to places like Christmas Eve church services, long dinners in a large group, places where there was no “escape” route should the inevitable happen.

This chain of events has made us pretty gun shy.  And my husband has an even harder time with it than I do.  I am guessing this is because I take them more places by necessity- the doctor, shopping, play dates, etc.  My husband definitely drags his feet when it comes to taking the kiddos out, and I get it.  At the same time, there is no way to teach them how to adapt to their surroundings, to cope with sensory overload, except to expose them to these very things.  Gradually. 

Thus far I have been doing this by taking the boys out in one on one situations by myself.  And it has gone pretty well.  But we need to be able to go places together, we need to get over this fear, the past issues that we had.  Some ways to make going out less nerve wracking- aim for individual events only- such as a movie, and just a movie, or a meal, in a “friendly” arena, and just that.  It also helps to have safety in numbers.  We have been lucky in that we have met several great “autism families” in the past year or so. Going out with another autism family is very helpful for us; does someone usually have a meltdown??  Yup.  But we are among “friends”.  Sometimes it isn’t one of my kids but one of theirs and vice versa.  Either way, there is a built in support system for either family.  Everyone is trying to accomplish the same goals- to minimize sensory issues, to be in a venue where screaming is not necessarily noticeable, and to get food on the table asap!   

Some may say this is catering to one’s kids, spoiling them, and go back to that whole autism is a result of spoiling your child thing.  WRONG!!!  Remember this people, we all started out on a level playing field in this parenting game.  I was in a wedding when Jack was 4 weeks old and took him with me!  I took him to big family events and social events when he was quite little, I didn’t coddle him.  The changes in our routine came as a result of his sensory issues, his reactions to these experiences.  Bottom line…he is not a brat.  And we are not “enabling” him, unless by “enabling” you mean empowering him to find new coping methods.  This is a common misconception among parents of neurotypical kids- that we are using our kids as an excuse to miss social events, (oh okay I have been guilty of this once or twice)  or that we don’t push them hard enough.  To people who are thinking this when reading this entry- let’s try this- you take ONE, just one of my kids for a weekend.  You will never, ever say this to me again.  When you take Jack to a playground for “fun” and the minute he jumps out of the car he is about 5 seconds from a meltdown because of the crowds, the noise, and the, gasp, bugs, you will get it.  Trust me!

So the point is, we took the boys out to dinner with another family last night.  And it was a smashing success- the restaurant was a combination of low key and noisy (like the kind of noisy where you can scream at the top of your lungs and no one notices), and yes that is possible.  There were foods that fit the kids’ dietary restrictions that they actually liked.  None of the kids had a meltdown, and neither did the parents, thanks to some margaritas.  The family that we were with takes their kids, one neurotypical and one on the spectrum, out frequently on errands etc.  I am in awe of this, as we have not been so brave in the past.  It’s good for us to be around them, to realize that the kids’ meltdowns cannot rule our lives and plans forever.  It’s a bit different having two kids on the spectrum with basically opposite sensory needs, but still, we made this work, we can make other outings work too. 

 

Autism is the ultimate brain teaser for both parents and kids.  If you consider yourself intellectual, you would love certain aspects of being a parent to a child with autism.  I am constantly planning, anticipating possible reactions/possible stressors, and thinking of work arounds should the worst happen;  I plan every entry to a store (Nate still cries every time we walk into a store) and exit (which is when Jack usually gets upset).  I am constantly assessing- constantly being tested mentally by my kids.  It’s definitely a challenge, but with work and experience, I am realizing that we don’t have to miss things.  John and I will always be challenged to work together in tandem in ways that other parents might never even think of.  While this can be tough on a marriage and family, it also rewards us with a deeper level of intimacy and understanding.  We were driving home last night and Jack was freaking out- I think over a peppermint?- and saying everything he could think of to shock us- his new technique.  John and I almost had tears running down our cheeks and were working like anything not to laugh our butts off.  Others would listen to Jack and think he is this naughty child- only my husband and I know the truth- the kid is going for shock value and frankly has little to no idea what he is saying.  He is pulling it all from you tube world war II airplane videos- which by the way, not so politically correct. 

Survival Tactics For a Successful Birthday Party Experience...

About two weeks ago at the bus stop one of the parents invited Jack to our little neighbor friend’s birthday party.  As any autism mom will tell you, two simultaneous thoughts went through my mind “that is SO nice of them to include him”  and “crap”.  There are few social activities harder than a birthday party for a young child with autism.  We had dinner with another autism family on Saturday night and I told the mom, “we have a birthday party tomorrow.”  Her response was “ughhh”.  I am not alone J

Noise- check, crowds- check, waiting- check, looking at a pile of presents and accepting that they are not for you- roger that.

I refuse to allow MY fears about Jack’s reactions at a party to get in the way of him attending.  As long as we can find a work around, I want him to go, and I am happy to take him.  But I don’t enjoy it.  At all. 

So I start prepping him well ahead of time.  First I ask if he wants to go- because if he says no, why am I going through all of this?  Of course he never says no, he’s a kid!  After this is established the true work begins.  The quizzing- “whose birthday is it Jack?”  “do we touch other kids’ presents?”  “do we open other kids’ presents?”  “do we try to eat cake before they sing the birthday song?”  “do we scream during the birthday song?”  “do we rush the mom for cake when the song ends (or bite her ankles- kidding)?”

You get the point.

There is a reason why social stories are employed for children with autism.  Much of these typical social graces just do not come naturally to Jack, even though his heart is always in the right place.  But talking definitely helps.

And so on Sunday we went to the birthday party.  I am constantly making a contingency plan in case of a meltdown- they live a block and a half away but I drove in case we needed to make a quick escape. I showed Jack the present multiple times and quizzed him- whose is this?  Do we open it?  Do we take it?  When we got to the party all of the kids were jumping in the bounce house in the back yard.  Jack did not want to join, which is not that unusual, he needs to kind of “feel out” his surroundings at first, so he came inside with me to where the grown-ups were.  Oh, and did I mention there were two hermit crabs?  Really there’s nothing else to the story- kidding.  As always, there was some well-meaning adult who kept repeating things like “wow, he really loves hermit crabs”  or “why doesn’t he want to talk about anything but hermit crabs?”  or “why don’t you get him one?”  Because I want to sleep someday, that’s why.  I offered no explanation and just practiced my new routine, smile and nod, smile and nod. 

His obsession was reignited for the day- he was glued to the tank for quite a while, but with some prompting he stopped pounding on the glass and trying to take them out- victory.  The mom called everyone down to the basement, they had a small exotic animal "show“ for the kids.  The first thing the teacher did was show us how she would signal us to be quiet.  By clapping her hands really loudly.  For the love of God woman.  Luckily Jack just quietly clamped his hands over his ears at that point, didn’t scream or anything.  Unfortunately, it was a crowd of small children and this clapping was repeated no less than fifteen times- he was not amused.  Then she explained that for the duration of the “show” (about an hour), the kids were to sit in a circle, “crisscross applesauce” with hands in their laps so they could see the animals.  Oh boy.  I sat down directly behind Jack and whispered the reminders over and over again.  He. Did. Beautifully.  I was really really proud of him.  Did he have times when he drove the woman crazy with questions?  Based on the fact that at one point she turned to him and said “when I am done with the presentation you may ask me 3 questions”, I’m going to have to go with yes. Frankly, by her reaction to some of the things he was asking, he may have been over her head, ha.  He knows so many facts about “creatures” that I wouldn’t be surprised if this was the case.  He only asked to leave for a “break” once- we headed up to see the hermit crabs for a little breather and headed back down.  He skipped the turtle races (the kids were divided into teams- it was really cute) at the end and hung out eating gummy worms.  I was ok with that, although I was a bit disappointed that he didn’t really try to interact with the kids at the party at all, until the last 15 or so minutes. 

Then it was cake time.  That moment that every parent with a sensory sensitive child dreads, and I’m guessing that if we dread it, our children dread it even more.  Jack would not allow the birthday song to be sung at his party earlier this year, which was fine.  Some well- meaning soul asked if maybe we could sing “For He’s a Jolly Good Fellow” instead, ummm, that’s really not the point.  So instead Jack blew the candles out in silence- someone started to clap and suddenly I was the bionic woman, jumping across the room “noooooooo!!!!!!”  That nipped it in the bud, and the fact that we were at a noisy farm also helped.  In any case, Jack is wise enough at this point to know that he will do better if he goes into another room when the birthday song is sung at another child’s party.  He asks to do it.  So we went outside, and every time someone would try to open the door, he would freak.  He did NOT want to hear the singing or clapping.  The one issue with this strategy is that by the time we come back into the room, there is always a long wait for a piece of cake.  This is hard for any kid, but Jack’s difficulties with self-regulation make it extra challenging for him.  Yesterday, the mom swooped over and just handed me a piece of cake in a covert manner.  I always knew I liked her.  Jack sat on the deck and chatted with three other little boys, which involved “hilarious” jokes about pooping in pants- my perfect boy didn’t quite catch that and looked at the kids like they were morons and said, I poop in the potty.  Sigh.  Love.  Him. 

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.

The Tightrope That Autism Parents Walk- Treatment Choices and Conflicting Ideas

It is so difficult to know what is right.  Or if there even is a “right” thing.  I am talking in terms of treatments for autism.  It is true that for many medical conditions there are multiple modalities of treatment available.  But autism is unique in the fact that a “cause” is not yet agreed upon.  At all.  We have so many theories- genetics, environment, gut imbalances, vaccines….and then a million other ones that I can’t even begin to name. 

I remember when I had Jack and was still in the hospital.  I felt so conflicted- the lactation consultant wanted me to offer Jack nothing but the breast, the pediatrician told me he needed a pacifier for “non-nutritive sucking”, and the OBGYN that I had at the time told me that I was starving him by not offering a bottle, and that that was why he didn’t stop crying for 24 hours straight (I went to a different doctor for Nate).  Between the contradictory ideas and the hormones I could have punched someone in the face.  I remember thinking, how can it be that complicated, and how can professionals who do this on a daily basis come in here and offer their very different ideas to a brand new mom?  Don’t they know how confusing it is?  Eventually we found our way- pacifier free the whole time, no bottle until 4 weeks old, and once my milk came in, things were a bit better.

And I thought THAT was complicated.  Navigating the available treatments for autism is like walking through a minefield.  We have the behavioral approach, the traditional medical approach, and the “MAPS” or “DAN” approach.  And they are night and day different.  Do we choose ABA solely?  Do we medicate?  Do we give supplements and change their diets?  Do we dress them in weighted clothing and spin them in swings for sensory input?  Who is right?  Thus far, I have chosen a combination of all of these, and honestly, I am pretty comfortable with that.

I think I may drive the boys’ practitioners  a bit crazy.  I know our “DAN’ doctor was like, really, a drug trial- when I told him I had enrolled Jack in his current study.  And when I spoke with the study physician from NIH on Friday and asked her about restrictions on other treatments while on study- she said, why, there are no other treatments known to actually help reverse autism, only medicines to help control behaviors.  Which is true in traditional medicine- ADHD drugs, SSRI’s, risperdol- it’s all symptom management.  I told her he was on B-12, the mitochondrial cocktail soon, the fluconazole, flagyl, etc.  She told me that none of this should matter as it’s not affecting his brain chemistry.  I get where she’s coming from, she even said that St. John’s Wort would not be ok because it could alter brain serotonin levels.  And Nate couldn’t take memantine, the medicine Jack is currently taking- risperdol and stimulants, etc would all be no-no’s.  Fortunately, we have not gone down that path with Nate, as there is no need.  He does not demonstrate any aggressive or dangerous behaviors at this point, thank God. 

So while it annoys me a bit that she didn’t acknowledge that anything we are doing is worth squat, it also works out to our advantage.  Because while she doesn’t consider these treatments worthwhile, she also doesn’t see them as a threat. 

As you know, I am a nurse.  And before I was a nurse I studied biochemistry.  Even though this is an extremely emotional process for me, of course, I do approach treatments from a very scientific perspective.  If I read about something, and the mechanism of action makes sense to me, and it isn’t potentially harmful, I am willing to look into it further.  The bottom line is that the research physician is correct.  Most of the interventions that are being used at this point do not have any “double blind”, formal studies pointing to their effectiveness.  However, many of them do not have any such studies pointing to the idea that they are useless either.  Don’t even get me started on vaccines.  Yes, formal research has indicated that vaccines do not “cause” autism.  But few to no studies have been completed looking at the current theories of how vaccines AFFECT children who already have or are predisposed to developing, autism.  In my opinion, walking around saying vaccines have no effect on autism is just as irresponsible as saying that they cause it. 

What many people fail to realize is that autism research is really in its infancy right now.  I don’t think that anyone has the answers, but many people have many different theories, and because it is an emotional issue, debates become very heated.  We are not at a place where we can point to one treatment, or even cause, and say “Aha!”.  Therefore, my choice remains that I will not put all of our treatment eggs in one basket.

Struggling and Losing Hope

I really am struggling.  I feel kind of bad, because I have recently become aware that there are quite a few local “autism moms” who read my blog and find it inspirational.  I don’t feel like an inspiration right now, I feel useless.  I feel like I’m doing it all wrong.  I feel discouraged.  I feel exhausted. 

This is all about my fear for Nathan.  My limitations when it comes to helping him.  It’s about the fact that at age 3 and a half he is entering his third year of formal schooling.  It’s the memory of that first teacher telling me that I wouldn’t recognize Nathan in 6 months, that his progress would astound me.  Here I sit.  Still waiting.  I sat down and really read his IEP update from the extended school year last night.  He is meeting only one of 6 goals- receptive language, per the speech pathologist (who ironically is the daughter in law of Jack’s kindergarten teacher- the teacher emailed me to tell me how cute her DIL thought Natey was).  The biggest issue is consistency.  Even if he does something fabulous, getting him to repeat it is impossible. I know this.  There are days that the words just flow, and then nothing, sometimes for weeks.  I know what it is.  It’s the “noise” as I call it.  He can’t focus; the need for stimulation is so intense, especially tactile and visual.  He constantly wants us to squeeze him- his arms his legs- he will take your hand and place it there.  If you do it “wrong” he moves your hand back, as in, try again buster.  He waves things in front of his face at every opportunity.  He figured out that our mail is kept on a washstand by the front entrance of the house and has taken to shredding it so that he can dangle the paper in front of his face.  He has a “Woody” doll that has been getting a lot of attention- it’s because its arms and legs sway when he puts it in front of his face.  He goes after toilet paper, paper towels, napkins, leaves, grass, anything that he can dangle in front of his face.  If none of this is available (and God knows I try to keep it away from him) he now uses his fingers.  Several people have said “oh look he learned to wave”.  I want to smack them and say, “No moron, it’s stimming”.  Once again- grace.  I smile and nod.  If that’s what they need to believe then so be it- I don’t have that luxury.

If we could calm the stimming he could make progress I just know it.  That’s why I have tried the diets, the supplements.  Why I haven’t given up, why I keep adding them.  For the past two years.  To be honest, today I feel like giving up.  I gave him nothing this morning for the first time in years, and I know it won’t matter.  We STILL don’t have the mitochondrial cocktail, as Nate’s doctor needs to call it in to the new compounding pharmacy and hasn’t yet done so.  I spent 20 minutes on the phone with him again this morning- what was I doing?  Reading him what is in the cocktail he wants Nate to have.  Because he didn’t know/remember.  I’m ready to throw my hands up and say never mind; ready to give in. 

But something made me make the call to his doctor anyway.  In the midst of all of the frustration and hopelessness, I found the motivation to call him again, and give him the list yet again.  And I will give the supplements to Nate tonight; he missed one dose, big deal.  I will keep on going.  Even though I am ready to quit and spending more time watching Nate with sadness, feeling more grief, than ever before.  My actions are another reminder to me of the strength of a mother’s love for her child- all of this work is just an expression of that love- and confirmation that love is indeed a verb. 

Just Add Water...

And the grocery store.

Jack has been doing pretty well lately.  It “feels” like the meltdowns have been a bit less frequent and maybe shorter in duration.  This of course makes a huge difference for our family and really gives a sense of calm to the household (relatively speaking).  I feel like I have been able to discuss things with Jack to a certain extent, actually reason with him at times.  It’s amazing.  As parents, the smallest things can make a huge difference right?  Like Jack is finally confident in opening his car door by himself.  Just having that one task taken off my plate when getting both boys situated in the car is awesome.  So something like a more relaxed atmosphere in our home has a huge impact.  Jack is also doing very well socially at camp.  There are several other little boys who he plays with every day and he looks forward to going.

Is it the medication?  Is he maturing?  The differences are subtle enough at this point that I really can’t answer that.  I still believe that he is likely on a sub therapeutic dose of his medication, and since he has been holding steady at 19.5kg since May, I don’t think that’s changing anytime soon (once he hits 20kg, the dose will be doubled).  All I know for sure is that there have been some differences.

In typical, comfortable situations.

Today brought that all home faster than you can say lobster. 

It has been raining all day, and on days like this, I love having breakfast for dinner.  And Jack likes making pancakes with me.  So when I went to pick Jack up from camp I decided we would run by the grocery store and pick up a few things so we could make it tonight.  I should have known the minute we stepped outside and Jack saw that it was raining that this was not a good idea.  Little adaptations that we all make to changing circumstances are so difficult for children on the spectrum or really any child with sensory processing issues.  If you tell him to run for the car because it’s raining he stands stock still and screams about it.  When we drove through a puddle he screamed at me to stop. The sound of it and the different feeling of it really bothered him.  He kept telling me he was going to turn the rain into fire.  Why he thinks this would be better is beyond me, but that was his plan.  He couldn’t bear to leave the paper airplane he made at camp in the car when we got to the store but then he had a meltdown because it got rain drops on it. 

It all went further downhill when we went into the store.  He is obsessed with the lobsters, like that is all he can talk about from the minute we go through the door.  I made him wait to go see them until we reached that point in the store.  He yelled when I picked up mushrooms (for me), he cried for gluten free chocolate covered pretzels, (which I gave in to) and then he ran for the tank.  Nothing too bad so far….but then he flipped out because one of the lobsters was missing its claw.  Freaked. Out!  I reminded him that it will grow back (not that there will be any time for that, but in theory it’s true), but then he spotted a lobster with barnacles which also upset him.  Then he saw that one had managed to get out of those little rubber bands they wrap around their claws.  I jokingly said he’s going to escape and that did it.  He started screaming “save the lobsters! Save the lobsters!”  When I say screaming, it’s not an expression, he was literally screaming.  People were staring.  My face was turning bright red as I took deep breaths and tried to pretend this was perfectly normal.  I am a good mom, I am a good mom.  He knows right from wrong, he just can’t handle this atmosphere.  This is what I say to myself at times like these, and repeat, and repeat and repeat.

He was pretty amped up after this, but did ok through most of the store.  He begged for things, but that’s to be expected.  A lady told us she wanted sausage too when we were on that aisle and Jack yelled at her that she couldn’t have it- he thought she was taking ours.

The culmination of this lovely excursion had to be when I opted to go to the self-checkout lane.  The other lanes were swamped and frankly I wanted to get the hell out of there. Jack was very distressed by this situation.  “There’s no one in a yellow shirt, where’s the yellow shirt guy??”  He didn’t like me scanning things (apparently when I make the beep it’s offensive), and he tried to grab everything off of the belt.  If you’ll recall, these belts are extremely sensitive to weight, so consequently, I kept hearing that annoying robot voice telling me to “please return all items to the scanner scale”.  He didn’t like that either.  Lastly, apparently it is also offensive when I bag the groceries- “I’m gonna eat those bags!!!”

He totally lost it on the way home- blaming it on his wet paper airplane again, but the truth is he was sensory overloaded.  Not his fault. 

I rarely take Jack to the grocery store, even with preparation.  For a child that is a sensory avoider, there are just too many unknowns.  Too many things that can set him off.  Nate loves the grocery store.  He is a seeker.  Another good example of this is Jack’s hatred of the rain, walking in the rain, etc.  Meanwhile, I tried to get Nate to stay near the umbrella today and instead he stood away from it, head tilted toward the sky, laughing like a little hyena when the rain hit his face. 

Clearly I let the last week or so of improved behavior go to my head.  It’s easy to forget how sensitive Jack is to sensory input, and thus, changes to his environment.  This was a good reminder.  It’s important to continue taking him places or this will never improve, but planning is needed, and rain OR store would be good, but not both.

Lesson learned.