When Mommy is Exhausted By Her Third Child, Autism

Yes, I still exist.  It’s been a long time again- I find myself having a hard time mustering up the energy and hutzpah to write lately.  I am tired, emotionally and physically.  I am discouraged.  There is no specific reason; no one incident I can point to- all I can say is that battle fatigue is a very real concept in the world of autism.  The beginning of the school year is especially hard, with all of the back to school activities, trying to get organized, etc.  My husband just changed jobs, which is a wonderful thing, but the change in routine affects all of us.  Especially the boys.

I have been living in this world for about 4 years now- since Jack’s 3 year old preschool year.  That’s not very long, but if I am being honest it feels like an eternity.   More and more lately I find myself wondering how I am going to keep going.  Everything is just so hard.  Name one thing, and I can tell you how autism makes it hard.  I was late getting to the bus today to get Jack, and I was so freaking panicked!  Today he was ok, but under usual circumstances, it would have guaranteed a meltdown.  I am programmed to panic.  To adhere to Jack’s expectations; to prevent the outbursts.  Same goes with Nathan, except that I have to push through many of his meltdowns, as they are over things like sitting on the potty.  Maybe I should just stop caring so much about the meltdowns, stop worrying so much about my kids being distressed- I just find it impossible to do.  Because I love them so much. 

Here’s an example of autism, making something joyful very difficult:

This weekend we went on an ordinary day trip to my sister’s for my godson’s baptism.  Only there is no ordinary for us.  I constantly find myself strategizing on how I can keep the stressors to a minimum, not only to try to keep my kids comfortable to the extent that that is possible, but to “blend in” at family events.  Ha.  And yes this is normal with small children to an extent, but my kids are 7 and almost 5- we should be past this.  So we had a two hour drive each way, a catholic mass to get through, then a baptism ceremony, and then a party.  Many times we would just say no, but this was so important to me- this was mandatory, even for my husband after his first week at a new job with a long commute.  

Navigating these activities with two boys on the spectrum.  There are just landmines everywhere you try to step- things that even after 4 years I cannot anticipate.  I knew that Jack would have a hard time with the music in mass- I didn’t think about the fact that the music would make him sad, make him cry, because he is so reliant on the tone to tell him what emotion is appropriate.  Hymns just sound sad- so he started crying about never having a birthday?  Umm, yeah.   And his volume perception is nonexistent- so everyone hears.  He talked his way through mass, stimmed his way through mass- we had a bitchy lady staring at us (what else is new?)-  Except this lady was the one who did the offering of the gifts, and she was a Eucharistic minister.  I’ve got news for you lady- I’m confident that when Jesus said let the little children come to me, nowhere in there did he say except the ones who are noisy (even though they are not being naughty).  I abhor people who claim to be so strong in their faith, who then turn around and reveal themselves to be the most judgmental peas in the pod.  God loves my children and they had every right to be in that church, stimming and all.   I was so upset about this that it took every ounce of restraint I had to keep me from literally going over to her and letting her know that she was staring rudely at two children with autism, who were doing THEIR very best, and that she should do her best to keep the ogling to a minimum as it was disturbing ME.  I didn’t do it, but what I did do was probably even worse.  I caved to the pressure of the staring, the feeling of sticking out like a sore thumb.  Nate was not crying, not shouting- just making his usual sounds and flapping.  Still, I asked John to take him out.  And in doing so, I set us up for a long, severe meltdown in the process.  I am estimating that it took at least an hour to calm him down after we removed him from the church.  Because daddy took him to the car (totally understandable), and in his little routinized brain, it was time to go home, because that’s what you do.  Only they sat there- and his frustration just built and built, and reached a crescendo when I in a well- meaning gesture went outside to check on them between mass and the baptism.  Because here came mommy and Jack- surely NOW we were leaving?  Poor little boy.  And yet, on this day, when I just wanted to enjoy being my precious nephew’s godmother, I resented the hell out of this (sorry for the language).  Who else has to think it through before they walk to their car like this- of what the consequences could be? 

Family members suggested that I might want to tell the priest that Jack is on the spectrum before the baptism, as his perseveration was reaching a fever pitch at that point, and even the act of me walking away from my 7 year old to go to the baptismal fount was enough to cause a meltdown, but I was a stubborn ahem person and just didn’t want to.  For once I just wanted to pretend- because Jack is high functioning right?  Everyone always tells me that no one would pick him out and say he has autism until they were around him for a while.  Well, when Jack started loudly complaining I finally leaned over to the priest and just whispered “he is on the spectrum”.  The priest said “oh I had figured that one out”.  Fabulous.  Really, the awareness is fabulous.  It still pissed me off at this point.  “Everyone” was wrong- his behaviors do stick out.  By the end of the ceremony he was throwing himself on the ground in despair because the priest said he was “taking the baby to Mary” and Jack assumed he was taking him away forever.  He was sobbing “but I just met him!!!”  My boy is sweet to the core, that I never doubt.

Notice that never in this story am I calling either of the boys “naughty”.  I don’t believe that either of them was intentionally doing any of this to be bad.  I believe they were both overwhelmed by the large amount of change and uncertainty- the very things that so often keep us home.  Some days you just have to walk through it and pray that you will make it out the other side.  I tried to keep my sense of humor throughout the day, and I think the only people I expressed my frustrations to were my mom and John, so that was good. 

But I am just so tired.  And I am so tired of people telling me it will get easier, because they are wrong.  I am tired of people telling me they “don’t even notice” the boys’ behaviors because the bottom line is that autism affects every single move I make every single day.  And I notice their behaviors, and more importantly, their lives are impacted at every turn by the sensory issues they encounter.  No, Nate was not snuggling up on the chair cutely while on the deck like you thought, he was trying to get in position to hump it.  I stopped him, so none of you knew.  And that’s how it always is. 

See, I have nothing nice to say…oh well.

Thank You For Stimming

What a freaking day.

I took the boys to see their developmental pediatrician today, which is always a treat.  Don’t get me wrong, I like him, it’s just always overwhelming, discouraging, enlightening, hopeful, and depressing all wrapped into one. 

For Jack it was more of a “tune up”; try these supplements, let’s get a few more tests, progress is there and we’re happy.  Not to poo poo it, because there were significant changes to be made, but it was all stuff I can handle.  And we also don’t want to make too many changes right now in light of the study.

Nathan was a different story.  I pretty much laid it all out for the doctor (mind you, this is a two hour appointment, not your typical doctor’s visit).  I continue to be extremely worried about Nate’s lack of progress.  I am worried about language and skills, but most importantly right now I am worried about his stimming.  How frequent it is, how intense it is.  I mean we don’t even notice some of it anymore because it’s just the norm- the lap running, the waving things in front of his face, the humming, and the repeating of sounds over and over again.  The constant need to be squeezed- arms, legs, sometimes head.  And I have described this before in these appointments.  But Nate hates any doctor’s office and usually curls up on my lap.  Today he seemed to relax a bit- he’s been to this office a lot now, and he got restless after we were in that small room for a while.  He got down; he ran his laps, made his sounds, waved his fingers.  The “full Monty”.  And the doctor saw all of it.  You could see his level of concern growing as he watched- as were the number of recommendations he was writing down.

One of the things he said is something I have been saying all along.  This just feels like yeast- the stimming, the grainy poop (sorry), the crazy laughter.  The fact that he improves on nystatin but then immediately reverts to his old behaviors when it’s stopped.  All of these things point to yeast.  Not to mention that this issue tends to crop up in kids (note that these kids also have a genetic predisposition to this stuff) who are on lots of antibiotics when they are very young, and also on nebulizers.  Yes, Nate was on both.  Repeated upper respiratory and ear infections.  Lots of wheezing, which has since resolved.  The antibiotics kill off all of the good bacteria in the gut and leave it vulnerable to yeast growth.  Repeat this multiple times and you could have a real mess on your hands.  That’s where the doctor thinks we might be.  If I could offer any advice to parents of little guys (and I usually don’t dispense advice in this blog) it would be this:  put your kid on a probiotic.  They have powdered ones you can mix in with breast milk or formula or even water.  Give your little one the good bacteria.  It’s a relatively cheap way to prevent this yeast overgrowth.  Our world is TOO antibacterial at this point and I really believe it is causing more harm than good.

Long story short, the doctor wants me to send Nate’s urine for amino acid testing.  The results of this testing show if certain byproducts of yeast or clostridium (another chronic gut infection) are present, and thus confirm the presence of the issue.  There are few direct ways to test for this, but this is one of them.  Of course this is not covered by insurance.  We have put it off and treated empirically for suspected yeast.  It’s time to bite the bullet and send off a check for $300 to have my kid’s urine tested.  It’s just time.  So he has his specimen collection bag on tonight- plus two diapers and zip up pajamas and tomorrow FedEx will pick up his pee (still makes me giggle).  Once the results are in we will use them to guide our next steps- likely stronger probiotics, a stronger round of fluconazole, flagyl if needed for clostridium. 

The other step we decided to take today was to start a “mitochondrial cocktail” for Nate.  This sounds scary somehow right?  But really it’s just a certain combination of supplements that help Nate’s mitochondria to function better.  Apparently some of Nate’s more recent lab results have been pretty indicative that this is a problem for him.  Here is a little more info on what that means:

http://mitochondrialdiseases.org/autism/

What is the role of mitochondrial dysfunction in ASD?

All ASD is not mitochondrial disease. However, mitochondrial dysfunction has been found repeatedly to be prevalent in this group of children and adults. The brain and muscles require a tremendous amount of energy to function normally. Deficiencies in the ability to fuel brain neurons – as may occur with mitochondrial dysfunction – could lead to some of the symptoms of Autism.

 

Because mitochondria make ATP, as well as perform vital cellular tasks, mitochondrial dysfunction can result in less energy available to fuel the high-energy needs of the brain and muscles, and also leave free radicals in the system where they can cause damage. Overall, there is a large and growing body of research showing that individuals with ASD often have significant mitochondrial dysfunction, which may be a cause of, or contributing factor to, their development disorder.

So here is what the “doctor ordered” (before reading take a deep breath- I know I have to):

Carnitor 3 tsp 3x a day

Ester C 1000mg 2x a day

Vitamin E 400 IU 2x a day

Bcomplex 100mg 1-2x a day- B1, B2, B3, B6 (already gets B12 injections)

Alpha Lipoic Acid 1000mg 3x a day

Biotin 10mg 1x a day

saccharomyces boulardii (second probiotic)

and continue everything he was on previously

And to be honest, there are 2 more that I, the nurse, cannot decipher due to his chicken scratch so I will have to call the office about those. 

Can someone explain to me how on earth I am supposed to get all of this into a child who doesn’t swallow pills??  Seriously?  I decided to experiment with different substances to mix these with this evening- thus far he has rejected almond butter, chocolate syrup, and applesauce.  Yet he somewhat accepted fish oil, which he gets every day.  Any

suggestions are welcome.

I want to thank Nathan for stimming in the office today.  I think it was a very good thing for the doctor to see him in action.  I think it pushed him to be a bit more aggressive.

That’s about it for tonight.  Excuse me while my head explodes…

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.

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.

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.

Nerves

Tomorrow begins a new chapter in our lives.  I am taking Nate to "daycare" tomorrow.  And I am a bit of a mess at the moment. 

I know it's the best thing to do for him- to have him in an environment where the people are trained to help him.  But this mama can't stand the thought that he will be confused and scared initially.  And he won't have any way to communicate that.  Other than screaming of course. 

Eventually, I will likely begin to enjoy having a little bit more freedom.  Working full time from home and having the kids in the house is definitely advantageous in many ways, but it also takes away many of the positive aspects of working as well.  Such as the time for one's self, the ability to run errands, the privelege of being able to focus on work.  I am very proud of myself for handling this particular juggling act for so many years, but the truth is, it has made me a little bit crazy.  My husband just doesn't understand how I am constantly planning my next 15 moves- everything is mapped out, continously reassessed, and mommy is, well, she's tense, all the time.  There is no other way to accomplish what I have been doing.  Or at least I haven't found one.

I will be driving Nate to daycare after the bus drops him off tomorrow, mainly because the new bus stop is not yet "official" for him, that can take awhile.  I am dreading leaving him.  I have really loved our lunches and I will miss him so much.  I just never thought I would be packing my three year old a lunch, or putting him on a bus for that matter.

On a positive note, we have been working with Nate on the 3D shape sorter ipad app for about a month.

http://www.realkidsapps.com/games-12101101/

Tonight it was like a little light went on in my boy's head.  He has been moving the shapes over, but I have been having to very actively direct him on which shape to try, when to turn the cube, etc.  Tonight he was suddenly figuring it out on his own, and attempting new shapes when I would just say "uhoh no go".  He was definitely basing it on matching the outline colors as well.  He kept restarting the app when he was done, he was having fun.  And eventually he started saying "uh oh no" with me, or something close to it.  All of this for a little bit of confetti when he finishes.  Really really cool to watch the wheels in his head turning.