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….

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.

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.

Worth It

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

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

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

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

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

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

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.