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.

An Encouraging Start

Quick update on Mr. Jack’s first week of school.  Despite the two calls from school the first day, and the call from the Assistant Principal yesterday, things are going swimmingly.  The call yesterday was not about anything Jack had done wrong but rather because he said something that worried her.  When he saw her, he told her he had a feeling he would be coming to the principal’s office soon, and be staying there forever.  Luckily I recognized these words immediately as a direct quotation from the movie “Alvin and the Chipmunks Meet the Wolfman” and was able to reassure her.  She thought that he saw her and thought he was in trouble.  Although he did say something a little worrisome about being in trouble and needing extra help.  I think he may be actually noticing that he has more help than the other kids around him, so we will need to work on him understanding that it’s not because he did anything wrong or because he is in trouble, but because he just needs some help.

When I spoke with the assistant principal she also had some very encouraging things to say.  She observed him for a few minutes and noted that he was way more engaged than the last time she had watched him (last year), was doing his work appropriately, and staying in his seat.  I was really hoping that having his own individual desk, rather than the tables they use in the kindergarten setting would help give him a sense of boundaries and of where he is in space, which is something he really struggles with.  It seems to be working.  So despite the fact that I have had 3 mini-strokes each time the phone rang with the school on caller id, I have already gotten some really positive feedback.

The trend is continuing at home when we do his homework.  Which they started the second day of school for first graders- sigh.  Jack had swim lessons at 5:30 last night and we didn’t get home until nearly seven.  And we had to sit down and do homework.  Which he did- without complaint.  Not only without complaint, but the number of prompts required to prod him along was significantly decreased.  Even tonight, when homework involved the dreaded “cutting with scissors”, I told him to get started cutting out the required words while I worked on something else (figuring we would actually start the work when I was done, as never in the past has he actually followed through).  But lo and behold, I turned around and he was half way done!!!

You know, I often grumble that there is so much work involved in raising my special needs kids.  Maybe I don’t mention this part often enough.  When I see progress- the payoff is HUGE.  I feel like Jack is capable of climbing Everest right now.  I am starting this school year with a much more hopeful attitude than I was expecting.  I have been so worried, but after these few days I am starting to think that the growth that I thought I was seeing these past few months was not my imagination after all. I’ll never know if it’s normal growing up, OT, all the work we do at home, the study drug, or the chanting we do after he goes to bed (kidding!) but frankly I don’t care why it’s happening, I’m just ecstatic.

And tomorrow morning it’s time to put Natey back on the bus.  Still not used to putting such a little guy on a big yellow bus…

What Do I Deserve?

What do I deserve?  As an autism mom, a wife, a working woman?  That is such a difficult question.  I am accustomed to putting my needs last, to funneling all available resources toward the needs of the kids.  Many parents feel this way, it’s just that in our case the needs are greater, and well, more expensive.  So I have tried to become ok with the status quo- the clothing I already own, the furniture we have always had, haircuts every 6 months or so, and reading the same books over, and over, and over.  And usually that’s just fine.

There has been one area of my home where I was unable to do this- the dining room.  To me, a family’s eating area is super important- it’s the place where the family gathers every day, the place where I often work after the kids come home in the afternoon, and the place where I work with Jack on his fine motor tasks.  And our dining set was on its last legs.  We bought our set as an antique about 9 years ago when we were very first married.  Even then, I didn’t like it.  But it was in good shape, it was a full set, and frankly, it was cheap.  I figured that we wouldn’t eat on that table much anyway once we bought another home- that we would eat in the kitchen.  That didn’t happen- and in the past 9 years, this “antique” has endured quite a lot of abuse at the hands of the entire family.  The chairs have been “tightened” and wood-glued back together countless times, I have recovered the stained seats, and Nate even knocked one chair down and broke it at one point.  I hated my dining room- to the point that when John and I were having marital problems my only slightly happy thought about a potential separation was that maybe he would take the hideous dining set.  Pretty sad, huh?  The breaking point came when we had company a few weeks ago.  I was setting up the table for the meal and found myself arranging the chairs strategically so that John and I would be sitting in the ones most likely to fall apart during the meal.  I didn’t want my guests falling.  Clearly it was time to make a change. 

Obviously we do not have bunches of money lying around to purchase new furniture.  It was more of a pipe dream.  But I would peruse craigslist on a regular basis looking at used furniture and daydreaming.  I always wanted a round table- that’s what I grew up with.  I was used to my feet resting on the pedestal; I had “fond” memories of me yelling at my mother as she quizzed me before a test (at our table) that she was “doing it wrong” when I couldn’t answer a question (ha).  It just felt like home to me.  So after looking for about 6 months, I finally saw a table and chair set that looked just right- and at a very reasonable price.  It was also high quality- Ethan Allen (also what I grew up with).  I broached the subject with John and after much discussion, he told me to go for it.  And I did, and brought the chairs home.  While I was there I saw the most beautiful china cabinet in the owner’s home.  I had seen it once before when I liked another set, but the set was white, and there was no way it would work in our home.  The owner agreed to sell it to me, for a price that in no way could I rationalize.  I felt like a petulant child- but I waaaaaant it!!!!  Perhaps that’s why I went back to my childhood technique for getting something I wanted- working for it.  My parents handed very little to me when I was a child- I worked for what I had.  If I wanted trendy clothes in high school, I had to use my own money; same went if I wanted a car.  When I was in third grade, I shoveled driveways for 2 days straight to earn the money to buy a cabbage patch preemie doll.  Loved that doll more than any of my others.  So I formulated a plan- I had already decided the table and chairs were worth it to our family- for safety purposes if nothing else.  The china cabinet- I couldn’t really justify it.  I can’t work overtime because my job is salary.  But….I could sell things.  Clear clutter and make some money at the same time.  So I set about doing just that.  In the span of a week, I sold our old dining room set, an old washer and dryer that were sitting in our garage, the elliptical I never use because I run now, the double stroller, and the play kitchen.  In the end, I earned all of the money needed for the china cabinet.  The gracious seller's husband helped me move it and the table- which was no small feat.  And now when I walk into our dining room I feel complete and utter peace.  It is exactly as I always pictured it- and I avoided the all too common guilt I experience when I do anything for myself.  I earned this.  And I love it as much as I did that cabbage patch doll.

What does this have to do with autism?  Well any autism or special needs parent could answer that in a heartbeat.  Once your child is diagnosed with special needs, it becomes difficult to ever picture doing anything for yourself again.  In general, I would be willing to sit on those rickety chairs for a lifetime if I knew that money could go towards an effective treatment for the boys.  But if I give every single ounce of everything that I have to my sons, no matter what the outcome, how am I treating myself?  I work hard every day, both at my job and with the boys.  At some point, I have to allow myself to have something too.  Something that makes me smile every single day, something tangible.  It makes it easier for me to handle the fact that Nathan started playing peekaboo with me for the first time in two years this weekend- and that this is huge progress (he’s almost four years old).  It helps me deal with the fact that Jack is going through yet another resurgence of his airplane obsession, accompanied by 5 to 6 daily meltdowns when he can’t find one, or something breaks, or I tell him he can’t keep his Lego plane in his bed while he sleeps (for obvious reasons).  There is that little voice in the back of my head screaming mitochondrial cocktail!!!!  Today I am telling that little voice to shut up.  Yes, so far every compounding pharmacy has quoted me $250 a month or more to make this for Nathan.  I am not going to do it.  Unless by some lark the insurance will cover it, or the pharmacist can omit one or two ingredients that will make it affordable (I can give one or two supplements the old fashioned, hiding in the juice way, just not 12).  If neither of these tactics is effective, then I am just going to have to think harder about how to hide all of these powders in food and drink.  Because frankly, I have spent every spare penny on supplements, and special diets for over two years now with very little progress.  I am not giving up on supplementing or on progress in general, but I have decided to slow my efforts to a more livable pace.  I didn’t stop buying the boys toys or clothing when the autism diagnosis came, and my husband didn’t stop his interests and hobbies, but when I look in the mirror I realize that in many ways, everything stopped for me.  To a certain extent, that’s ok, but I can’t sustain it forever.  So now I have my china cabinet.  And even though I ended up paying “nothing” for it after all that I sold this week, it was still a gift that I gave to myself.  Not only something that I earned, but something that I deserve.   

Life has to continue.  I can’t stop living, or ignore my wants and needs forever because of my children’s special needs.  I don’t have to choose, I can take care of them, John, and myself. 

Worth every penny! 

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.

That New Swing Smell

You can give Jack credit for this very umm, creative title. 

John and I dug in today and worked on the OT space we have been planning for the boys.  The swing I bought on craigslist literally came over night, we already have a trampoline and a sand and water table to put beans in.  Today I found a gym mat for $25 on craigslist.  I will probably want a second one at some point, but it's a great start.

First we had to clear out the front of the garage, which was a MESS.  This took about an hour and a half.  Then I went over to the kids' private OT office and inspected their swing set-up.  Between that and some very excellent pictures of a swivel hook by Meghan Gallagher Houder, we were in business.  Brave woman that I am, I went to the hardware store and found all of the stuff- bought the 300lb load bearing variety.  I know the boys are tiny but the swing is moving and gravity is at play, so I didn't want to take any chances. 

And voila, now we are cooking with gas.

The only downside was that the boys were fighting over the swing this afternoon.  Which is a good downside I suppose.  The trampoline had been buried in the garage for awhile- Nathan went right over to it and had a blast working on his jumping.  Even though he does this every week at OT, he previously hated the trampoline at our house.  He would pretty much climb under it and lie there looking at the netting.  If I tried to put him on it he would scream.  So that's progress for sure.

As for the "new swing smell"?  Here you go.....



Where this came from we have no idea!  It's not even a quote unless someone has been showing him secret new swing smell videos?  Yeah, no.  

"D Day"

Tomorrow is what I have dubbed "d day".  I will be getting up early, leaving the house with Jack by 7 and heading to DC for a "quick" appointment.  I plan to be home in time to put in a full day of work.  Tomorrow Jack is starting Namenda as part of the study he has been enrolled in.  I am nervous, excited, scared, and hopeful.

  We have been reading a book about Aspergers- I feel like Jack is old enough to notice that things are different for him, and I want to set the precedent early on that yes, different is the right way to say it, not less.  The book I found is called "What It Is to Be Me!- An Asperger Kid Book".

It is like reading or looking at a map of Jack.  It is about a little boy named Danny who has aspergers- he talks about how he's very good at some things, like computers, but has a really hard time with things like writing. (check)  It talks about his very strong senses, and the fact that sound often hurt his ears, and sometimes he likes to wear headphones.  It addresses food texture issues (pasta has never once entered my child's mouth), personal space issues, fixations, difficulty listening, CONSTANT questions about how things work, and taking things super literally.  It is a great book and Jack really likes it.

I tried to use some of these concepts to explain what this new medication is all about, and I have to admit it, mommy FAIL.  I used the example of his "super ears".  Or tried to. I was attempting to explain to Jack that he would be taking a new pill that might help him feel a little different, like things won't hurt his ears as much.  Somehow, he turned it into this- the pill is going to make sounds and it will hurt his ears.  Sigh.  So for the past 5 days I have been trying to undo this damage- every time he takes a supplement that's in pill form we examine it and confirm that it does not in fact have a mouth, so it can't make any sounds.  Hope this works tomorrow.

Here is some anecdotal info on Namenda.  Oh, and I should mention that this study, which is taking place at multiple centers nationwide, just increased it's enrollment from 120 participants to 900- seems it is pretty promising.

http://autismliveshere.com/2012/03/namenda-month/

https://imfar.confex.com/imfar/2012/webprogram/Paper11938.html


Here is the study we are participating in:
http://clinicaltrials.gov/ct2/show/NCT00872898

I am NOT a fan of giving my child drugs.  That being said, this year has been very very difficult for both myself and Jack's father to watch.  His difficulties in the school setting are almost painful to see, and knowing how smart he is and knowing how much the "noise" is getting in the way of him functioning at the level he is capable of is just awful.  I have tried B12, GABA, inositol, DMAE, melatonin and magnesium in terms of natural therapies.  I have tried focalin and intuniv in terms of ADHD therapies.  Nothing has helped, or at least not significantly.  So this is where we are.  This is the next step.  And at least with the study, he will be closely monitored.

So please say a few prayers for our family, the next few days could be very telling. 

Trial By Field Trip

I took the day off today (one of my FEW remaining vacation days) to go on Jack's field trip to a place called Camp Woodlands.  First of all, I should explain that for every field trip I am "cordially invited" by the staff of Jack's school.  And I get it.  It would really be a lot to ask of a parent volunteer to have a group of kids that included Jack- he needs so much supervision, and chasing, and...yeah, he needs a lot.

I won't lie and say I was looking forward to this day.  I was looking forward to time with Jack, and I was looking forward to the neat activities, but any time Jack is in a new environment, especially one with lots of environmental stimuli and structured activities, it is extremely challenging to keep him engaged, and to make him understand how to behave.  We don't have the luxury of me "giving him a look" and expecting him to understand to stop a behavior or be quiet.  He just doesn't register that type of change in facial expression. 

With all of this in mind, I will say that there were some victories in today's field trip.  Jack loved many of the activities, which ranged from catching fish in a net, to a ride in a row boat (Jack went by himself with two other students and a parent, and even led them in a rousing chorus of row, row, row your boat), to digging for bugs with Mr. Kevin, songs in front of a camp fire, and learning about trees.  He cooperated for at least the first few activities.  He was really ready to be done after lunch and had a mini meltdown at the first activity after lunch, with a burst of inappropriate behaviors, shouting and trying to run away.  I took him for a walk, even took him behind some trees and spun him around some (which is calming), picked him up and swung him.  Did not help much.  He had similar issues at the first part of the tree activity, where the kids were supposed to collect different tree "seeds"- pinecones, acorns, etc in buckets and see how many they could find.  The kids picked them up, Jack took them out of their buckets and threw them back.  There was a trailer in the area and all he wanted to do was climb on it. 

OK, so here's the thing.  Much of this is about me.  Yes, everyone and their brother noticed that Jack's behaviors are difficult, believe me, he stood out today.  What do I expect?  He is on the spectrum, he has ADHD (which is becoming a more and more clear issue each day).  He is going to have a very difficult time with things like this.  There is a reason why he has a full time aid in school, and that is a familiar environment.  I know all of this on an intellectual level.  But I am embarrassed.  Really really embarrassed.  Most of these parents don't know what is going on with Jack- I feel like they just think he is being naughty.  That his mom is right there and just can't calm him or make him behave.  You have to really watch him- he CAN'T HELP IT.  Even when he is really trying to listen, he just can't do it.  Even though I get all of this, it is frustrating, and for someone like me, who has been quite the rule follower her whole life, it is intolerable to me to see people looking at my kid in a disapproving way.  Some parents are better than others, some people are more tolerant than others.  It was a long day to endure with Jack- one that tried every ounce of patience that I have, and one that made me want to stand on a stump several times and scream "he's not naughty people, he is sensory overloaded!!!!"."  I mean, come on, he climbed on the forbidden trailer at one point and informed me that he was activating his "sensory integrator". 

This is the darned blue crab that he saw at the first activity- he could think of little else all day and tried to run away to see the crab on multiple occasions....

Digging for bugs....

Here are the positive things I take from today.  I was paired with another nurse mommy- we talked shop a bit, she was interested in my job and working from home.  She was empathetic and picked up slack with the other kids when I was chasing Jack.  Several of the parent "teachers" were just as understanding, although I could tell that wasn't the case for all of them.  And the other kids- Jack is well loved among many of his peers, and as always, especially the girls.  All of these little mothers just crack me up.  But it's not just the girls, there are some great little boys too.  That really touches me.  Kids wanted him to sit with them, on the bus, at lunch, etc. 

Jack and his buddy on the ride home....

So we both survived.  And we both learned some things.  I guess that would make the day a success.  However, now, I am ready to go sleep- for a long long time.

OT Shenanigans

Thought I would share some really fun videos of the boys' progress in OT.  Jack has been with the same OT for close to 3 years now, and I will be sitting in the waiting room and "bing" I will get a video of one of the boys doing something awesome.  I used to go back to watch when it was just Jack, but Natey gets really really mad if I come back to watch something and then leave again.  Thus the videos.  Which is really preferred, b/c I can watch them over and over again!
First Jack....

seat drops on the trampoline!

"hanging" out- this is a HUGE improvement in strength for him

And last but not least, Natey and the zip line



I want OT!!  Trampoline?  Zip line?  It's like Rolly Pollies!  Except it really is very challenging for these guys, and I have seen both of them make tremendous progress.  They both tolerate so much more movement than they used to, and both have great improvement in strength.  The sensory benefits are also huge.  Enjoy!

The Smallest Things....

Can feel like huge victories when you are dealing with autism.  I know all my autism parents know exactly what I mean.  A hug is always awesome, but when your kid has sensory issues and hugs you, you feel like you just won the lottery.

Today's first victory occurred when I opened Jack's book bag after school and saw his hermit crab book.  This is a victory because we recently changed his behavioral incentive program at school from toys (he wasn't showing much interest) to "book privileges".  I am sending in books about his areas of interest and if he does a good job he gets 5 minutes to look at the book.  So if he brought it home, it means he earned book time, and it means that it was a good pick by mommy because he didn't want to give it back.

John and I both noticed that it was "a bit quiet" (read- dull roar) before dinner, and when I looked downstairs, Jack was playing independently.  Not only that, but every once in awhile he would holler up to us, "hey, I found my toy oriole" or "look, my hermit crab!".  He was focusing enough to look through the box for the exact toy he wanted AND not losing his temper when he couldn't find it right away. Usually he is screaming for me and yelling for me to "find it now!"  So this was really, really pleasant.  Small thing....big victory for Mr. Jack

How About Action??

Here we are again- Autism Awareness Month, and more specifically today is the "day".  I feel much much differently about it than I did last year.  I feel much more like a "down in the trenches" autism mom, more seasoned, more "aware".  Aware of the kids' needs, the costs involved, and the barriers involved.  Our family has been through it, learned more than we ever could have imagined, and adopted a very different way of living in order to accommodate our kiddos.  Bottom line- WE REALLY GET IT.  And because of this, I am no longer content to "celebrate" World Autism Awareness Day.

Don't get me wrong, it's very important for society to acknowledge this growing (exploding) trend of autism diagnoses.  I am glad that any type of Autism Awareness Day exists.  It's just not enough.  I mean, light everything up blue (pretty), buy jewelry and t-shirts (especially do that since some of the money likely goes to research), but don't stop there.  Here are some really very minor ways you can actually contribute to the cause:
http://www.tacanow.org/ways-to-help/autism-awareness/

I am a big fan of TACA.  Talk about Curing Autism.  I think some people hear this and assume that they think autism is like the plague, something to be eradicated.  But as I have been to more and more meetings I have come to see that the goal (right now) is to find ways to alleviate the symptoms that disturb our children, to help them succeed to the best of their abilities without their sensory or attention or communication issues getting in the way.  And yes, it does involve medical intervention.  And behavioral intervention.  This organization also provides invaluable resources for parents, such as information on any tax benefits available to parents of autistic children (not many) or a full list of brand names of items that are gluten and casein free, or a comprehensive list of providers all over the country.  And support, which is of course, huge. 

TACA is calling this Autism Action Month, and I am on board with that.  We all need to take action- to spread awareness, to show acceptance and to raise funds for treatments, as families are weighed down tremendously by the financial implications of having a child with autism.  Or two.  What are we doing as a family for Autism Action Month?  Well, we raise awareness every time we go out in public.  But John and I are attending an autism conference in Pennsylvania this weekend.  We are educating ourselves on the best ways to help our boys.  And we will continue to attend TACA meetings, and to befriend other autism parents.  And for me, one of my biggest actions is this blog.  Anyone who reads my blog regularly and truly listens has become, by default, autism aware.  Now, I am challenging you to take action- donate, walk in a walk, or run in a run, or simply invite an autistic child over to play (mom can stay :-)).  You have no idea how much that would mean to the child and especially to the parent.  Acceptance isn't just about refraining from scowling when an autistic child has a meltdown in public (although that's a great start), it's about welcoming individuals with autism into your lives.

A New Best Buddy....

We have a new best friend in our house.  And by in our house I mean in Mr. Jack's life.  And it is just about the sweetest thing.  Ever.  I have mentioned that he recently has taken an interest in horses- he loves the Black Stallion movie and Black Beauty.  He has a horse book that I bought him and he looks at it all the time.

Anyway, about a month ago, we went to buy a birthday present for a little friend at the Disney Store and Jack saw the stuffed horse "Angus" from the movie Brave.  He had to have it.  I am a sucker for anything that is not an airplane, shark, robot, you get the idea, so I caved.  I figured it was something he would play with for a few days and lose interest in. 

Instead, I am watching Jack claim his first true "wubby".  It's a beautiful thing.  He has carried airplanes and robots all over the place, true, but these things were always just objects that he was obsessed with.  He has renamed Angus "Black" (like the black stallion), although he does still answer to Angus when mommy messes up.  For the past two nights, Jack insists that we plug the sink and run water when he has his bath so that the horse can have a bath (in the sink) too.  He carries him everywhere we go and sleeps with him every night.  When he got sick the other night the first thing he wanted me to do was make sure Angus was ok.  This is so different from his usual frantic fixations on things.  It's more like....a relationship?  He worries about him and loves him.  This is really huge. 

Sweetest boy.

Beware the Autism Mom!

A friend of mine reposted this on facebook earlier this week.  I have read it MANY times before, but never before have I felt so much like I have become this person.  This mom.  And I am not ashamed, I just feel as though I have been through my initiation and I am no longer willing to take bullshit.  I have not felt like hiding because of my kids in a long time.  We are who we are- take that!

Last weekend I took the boys to the mall to get some spring clothes for Jack.  He was in a bad way that day, hadn't slept real well and was having horrific poop issues.  Which is, like for many autism families, an ongoing saga in our house.  I smelled something while I was trying to grab as many t-shirts and pairs of shorts as possible before the inevitable meltdown that comes with being in a busy place doing something that he would never choose to do, when I smelled it.  I looked at Jack and he said, "no really, I just farted", then he burst into tears.  I felt terrible for him, as I know how sensory related this all is, that it really isn't his fault.  We are standing at the checkout, he is hitting every button on the credit card machine, he is talking talking talking.  I physically removed his hands from the machine about 10 times, we had to keep redoing the transaction.  Meanwhile Nate is blissfully sleeping in the stroller (thank God for small miracles).  The cashier was making faces at us, I could tell she was annoyed.  The cashier standing next to her smiled at me and said "don't worry, I know what's it's like, I had two boys too".  I smiled back, understanding that this woman was trying to show empathy- however this did not stop me from snapping in that moment.  That part I feel a LITTLE bad about.  I responded, "oh, did they both have autism too?"  It wasn't directed at the nice woman, it was directed at the biotch who was making me immensely uncomfortable with her looks.  Enter awkward silence.  So I grinned, told Jack it was time to go and headed to the bathroom to deal with the disaster I knew was awaiting me.  Let's just say we drove home with Jack going commando.  Hey, at least most of the spring shopping is done.

The below post is from the autism mom blog Laughing Through Tears.  It is such a perfect representation of how I feel so often now that I just had to share. 

We’ve all been there.  Every autism mom has had at least one encounter with some insensitive jackass who insulted our children or criticized our parenting.  It might have been the perfectly groomed soccer mom who said your child was merely spoiled, or maybe the old biddy that told you to take your screaming kid outside even though you were already dragging him out the door in a Fireman Carry, or maybe just some random mean guy who muttered, “This is why I hate kids” under his breath while your child happily flapped past him.
Usually we just have to mention “autism” and the critics slink away, embarrassed and with their tails between their legs, but every now and then you meet somebody who is such a huge asshole they don’t care if your kid is autistic, they just care that your child’s noise/stim/existence is annoying to them, and they don’t hesitate to tell you about how obnoxious your child is and what a terrible job you’re doing raising him.
Sometimes their callousness shocks us silent, and we sit in the car afterward, thinking of all the retorts we could have made.  Sometimes we take the higher ground and walk away, and sometimes we dig in and defend ourselves. (And sometimes we defend ourselves loudly and with many obscenities, but that bitch in the bookstore deserved it!)
These people who attack us are horrible because they have no empathy.  They’re shallow people who probably lead miserable lives devoid of depth and meaning.  They need to learn compassion and respect, but mostly they need to learn to fear us, because autism moms are not to be trifled with.
 Top Five Reasons You Should Never Piss Off an Autism Mom
Five.  We’re Already on the Defensive
What?  You think you’re the first person to think I’m a bad mother? Get in line.  People have been assuming I’m a bad mother for the last five years.  I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid?  No shit, Sherlock – this panel of physicians and psychologists agrees with you.  Tell us something we don’t know.  Have something new and clever to add?  No? NO?  I didn’t think so…
In other words, we have experience with assholes like you.
Four.  We Are Not Socially Well-Adjusted
We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society.  We have cut ties and discarded the family and friends who couldn’t handle our situation.  We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate.  We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words.  We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap?  Yes.  Good choice.
Three. We Know How to Fight
Autism moms know how to fight because we practice. We fight all day long.  We fight with doctors about treatment, and then we fight with insurance companies to get it paid for.  We fight with the state over services and we fight with schools about our IEPs.  We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing.  We fight with our children to make them keep their pants on in public.   Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?
Two.  We’re Already Angry
Autism moms carry huge amounts of unprocessed rage just below the surface.  We’re mad at god or the universe or fate or whatever it is out there that gave our children autism.  We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children.  We are angry about the loss of the child we were supposed to have, and we never truly stop mourning.  We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did.  We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place.  We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?
One. We’re Sleep Deprived
Some of us haven’t had a good night’s sleep in years.  Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted.  We’re muddled and short-tempered and irrational and crazy.  Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you.  Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom.


AMEN fellow blogger, A-MEN. 

Decisions, Decisions

As parents, we all want to provide for our children.  As good parents, we want to offer opportunities for growth and development outside the necessities.  But where is that line?  What is a necessity and what is an enrichment activity?  It's a tough call.  We live in a pretty upper middle class area where you feel even more pressure as a parent to have your child enrolled in multiple extracurricular activities in order to offer them a level playing field to that of their peers.

Add Autism to the mix and that line between enrichment and necessity becomes even more blurred.  There have been many different types of therapies researched for kids on the spectrum that have been found to be beneficial.  There's no way I can list them all, but here are a few:  equine therapy, aquatic therapy, vision therapy, occupational therapy, speech therapy, social skills groups, special needs sports.  The pressure on an autism parent increases because like all potential therapies for our kids, we feel a desperate drive to provide these things.  What if one of these activities really helps one of our children to make a breakthrough? 

So of course I want my kids involved in all of this.  Never gonna happen.  The boys are both in OT, which is mostly covered by insurance, but just to give you an idea, that alone (and this is just copays) comes out to $45 a week.  OK.  So swim lessons, not so bad, right?  WRONG.  For a special needs child, lessons range from $40-50 for each lesson. I have checked with all 4 local special needs options.  Equine therapy, about the same.  The boys could have speech covered by insurance, but with our insurance, they may have 60 sessions each year a piece and this encompasses speech, occupational, and physical therapy.  How on earth does that make sense?  Oh, I see your child has greater deficits than the child who only requires OT once a week.  I see your child needs both OT and speech.  OK, they can have both, but they can only go to each twice a month.  Now how is the child with greater needs going to make progress given this set of circumstances? 

Now, add to this....wait for it...two kids who could benefit from all of this.  Can someone explain to me how on earth I am to provide these opportunities for my children?  Because you see, they already require daycare, special needs daycare and guess what?  You got it- because they have special needs, it's more expensive.

When is someone going to give our families a break?  I know that our children have special needs.  I know that teaching them requires giving more of one's self.  Believe you me, I know.  Thing is, my work didn't start paying me more in order to assist me in taking care of my special needs kids, last time I checked there isn't a larger tax deduction for a child on the spectrum, and I'm pretty sure that no one has set up a trust fund for either one of my kids without telling me.  So HOW am I supposed to choose which child gets what?  Which child needs these things more?  If I won the lottery, I would be giving money to every autism family I could find.  I would be setting up a "therapy fund" for other kids with autism.  It continues to sicken me that on diagnosis, when I asked what I could do for my child, the doctor replied "how much money do you have?"

Sickens me. 

Sleep and the Time Change

Ahhhhh...daylight savings time.  I am sure I will appreciate the extra sunshine.  I planned carefully last night, put the boys to bed 30 min early (splitting the difference) and hoped for the best.  I needn't have bothered.   See, Nathan is very flexible and will have no issue going to bed at a slightly earlier time tonight.  And Jack?  Well.....

Daddy has been out of town this weekend on a guy's trip.  He made a booboo before he left.  Which is really not fair to say.  It is impossible to know how things will affect Jack.  So scratch that, he tried to give him incentive to be good for mommy.  He told him that if he was a good boy, daddy would bring him back a little treat.  Unfortunately, our son, our sweet boy with aspergers, can take a thought like that and let his very busy mind run wild.  There have been many times in Jack's short life where John and I have gotten really mad at each other for something either of us did with Jack that triggered one of these obsessive periods.  I have come to realize over time, that although we are better at tempering our statements (for example, if we are going somewhere he is going to be excited about, we tell him as we are pulling into the parking lot in order to ensure sleep the night before), some things one just cannot predict.  So, on that note- Jack was up from about 1am (old time) on last night asking about every 10 minutes if dad was home yet and what did he bring? 

Message to John- PLEASE DON'T FORGET- PULEASE

So planning for daylight savings time was not necessary- Jack will likely be exhausted no matter what time he hits the hay tonight.  And ditto for me!!!

Diagnosed in 2007, hahaha