NIH Sleep Study #1

We’re home safe and sound.  And here is what I can tell you- NIH is an AMAZING facility, the neurologist rocks, the sleep study technician was fantastic, and I am ready to drop.  It was a long process, and it may not be over but I’ll get to that.

First of all, everything happened when they said it would happen.  Within 10 minutes, no exaggeration.  After we arrived on Saturday afternoon, we hung out in Nate’s room for a bit, the neurologist came in to examine him and ask some questions and then she walked us up to the sleep lab.  Where she proceeded to hold the portable DVD player at every angle imaginable so that Nate could always see it while the leads were being placed. The lead placement was a dream.  This technician works with all of the kids that come to NIH with autism, and has his own technique.  They usually “dry” the glue they use to stick the leads onto the head with something that blows air at the kids- not a brilliant plan when a child has autism.  A big no no actually.  So instead, he does the gluing and then wraps the child’s head  tightly and they stay on just as well if not better.  So that cut down on one potential trauma.  We did not have to use the papoose restraint.  Nathan cried less than 5 minutes during the hour and a half placement.  It could not have gone better.  He was even falling asleep at times.  Then we took him into the room for the sleep study and BOING, he got a second wind.  We turned the lights out at about 9 and he didn’t fall asleep until about 11:30, which is very unusual for him, but given the circumstances I am sure that was within the norm.  He slept until about 7 and the tech said they got some “very good data” whatever the heck that means.  He unhooked the leads from the machine and wrapped them securely in Nate’s “cap”- he had quite the tail, somehow he managed to make it look ridiculously cute.

We had the whole day to ourselves.  I had really doubted the whole idea of playing with all of these leads pasted to his head, but we actually had a really awesome day.  I got to play with my kid all day long, no laundry, no cleaning, no cooking, just me and Nate.  He was deliriously happy, and I heard quite a few words including “I see fish”, when we visited a huge fish tank in the admissions area.  I ran the boy ragged, or so I thought, and he had no nap.  He didn’t bother with the leads much at all, to be honest, the only time he seemed to notice them was when we went back to his room and he wasn’t busy anymore. 

Last night, oh last night.

Let me qualify this story- I firmly believe that some gluten or dairy slipped into Nate’s diet despite the fact that his doctor put the orders in appropriately.  Or something just flat out upset his stomach.  It was gasapalooza in the sleep lab last night, holy moly, that poor kid.  When we went back upstairs, and the tech looked at Nate’s leads after laughing a bit when I told him it looked to me like just two were loose.  I was right.  He told me that this was the most intact he had seen anyone’s leads in a very long time, if ever.  Just the leads behind his ears, which were itchy as heck.  He fixed those leads, rewrapped his head and we went to go to bed.

I should explain that because this was a sleep study and not just an EEG there were other leads besides the ones on his head.  Arm and leg leads to measure movement, an O2 saturation probe, and the tech initially tried to put that little device under his nose to measure his breathing.  Not likely for my little thumb sucker.  That lasted about a minute.  He fell asleep right at 8pm.  Hooray, my plan worked!  I watched some Say Yes to the Dress on Netflix, and then drifted off.  Until about midnight, when Nate woke up- and stayed up- until 5:30.  He was just thrashing around in the bed with what I believe to be stomach pain, but in the meantime, the leads on his legs were driving him nuts.  He wanted continuous deep pressure to his legs and feet, it was the only thing that comforted him.  To the point that my hands are literally sore from pressing today.  At 5:30 the tech came in to tell me that he was terminating the study because even if Nate fell asleep again they wouldn’t be able to get enough data to make the study adequate.  And no more than 5 minutes after he left, Nate of course conked out.

When we woke up Nate had the following procedures in quick succession- a daytime EEG, blood draw and EKG.  He tolerated everything beautifully, which with the degree of sleep deprivation he had is pretty amazing.  The only low point came when the daytime technician started to take Nate’s leads off.  I was warned that he could have a little skin irritation from the leads, but according to the neurologist, Nate had a pretty severe reaction.  He has blisters on his little forehead.  The suckiest part was that I had to shower him immediately to get as much glue out of his hair as possible.  He was screaming bloody murder because the shampoo stung his forehead so badly.  I felt terrible. 

After all of this, we were free to go.  The question remains- was this study enough?  And the neurologist could not answer that.  Normally in pediatrics they need the two nights.  As she said, our experience with Nate is just one example of why the “norm” cannot apply to a child with autism.  They usually need two nights because typically the first night is not very accurate, as the child is in a strange place, scared etc.  Usually the second night is when the best data is obtained.  Nate did the opposite.  So the neurologist has to talk to the IRB (research board) and they have to decide how they want to approach this.  They may accept what they have, or….we may have to repeat the whole study.  Not just one night, but two, because if they are not accepting it because we don’t have the second night, we have to do a first and then second night again in order to achieve that.  And if the government shuts down at midnight, we may not have a determination for a while.

At least I know that they won’t just kick us out of the study, but boy I don’t want to do that again for a while.  We already have to do another at 6 mos. and at a year to check for changes, so the prospect of adding a 4^th sleep study, no matter how well he tolerates it, is a bit daunting.  OK, time to pass the heck out.

Gearing Up...

Do you remember that obsessive, unprepared feeling you had the first time you were taking a trip with your baby as a new parent?  Now, multiply that feeling x10.  That’s where I am right now, and that’s saying something because I was one of the most prepared moms out there the first time we took Jack out of town.  Zip lock bags of all favorite snacks, every baby product known to mankind, multiple strollers, pack and play, well you all know. 

But what do you take for a 3 day stay in the hospital in which your autistic toddler is going to be absolutely miserable, likely sleep-deprived, and continuously wanting to pull approximately 30 electrodes off of his body?  Not to mention the fact that since he’s not sick (thank God) he is not likely to want to sit still- at all.  Seriously.  What? 

I got an “itinerary” from the study coordinator today and discovered that we will be transferred to another room at night time for the sleep study and will have a technician hanging out with us all night.  This further complicates my packing list, as I will have to choose a small number of things to carry with us each night when we trek over to the lab.  They have put in for a gluten/casein free diet for Nate, but I very seriously doubt he will eat much of what they give him.  The boy has a crazy picky palate, which means that I really need to pack enough food for three days. 

And I need to keep his hands and mind busy.  A ream of paper would likely accomplish this since he loves to shred paper and dangle it in front of his face right now.  And I will be bringing paper with us.  The boy can stim away as much as he needs to this weekend, I have no plans to redirect that behavior.  It gives him comfort.

I found several new “fidgets” on amazon which came today.  One is a “glitter wand” (clear plastic wand with glitter in water that moves back and forth), one is a “water wigglie” which you can squeeze- I think he will like that.  And then there are the old standbys, barrel of monkeys (this boy can make a chain longer than him!), and some favorite movies, especially “Happy Feet”, a laptop and the IPAD. 

I am bringing a book- hahahahahahahahaha

Not likely mommy.

Say some prayers for both of us, but especially Nathan.  Pray for no seizure activity, decreased REM cycle length (I think), and a smooth process for both of us.  God I love this little boy, and I just hope that all of this will lead to something positive for him. 

Big Happenings on the Horizon....

Ah assessments.  ASS essments.  How I loathe them.  How Nathan loathes them.  That came across loud and clear today- at least to me. 

The day did not start out swimmingly anyway.  Nate woke up at 4:30 am and demanded continuous deep pressure on his arms and legs until about 6am when he fell asleep again and I got up to get dressed.  I woke him up, threw on his clothes and put him in the car for his breakfast.  It took us over two hours to get to NIH- beltway traffic never ceases to amaze me.  I will say that the NIH security guys were very accommodating- they did not make me get Nate out of the car, instead they used the “wand” on both of us and took my driver’s license in to get my visitor id for me.  That was really nice.  Still we ended up being about 20 minutes late- I am not fond of being late- I am chronically early.  Oh well.

The testing they did today we have been through at least, hmm, maybe 6 times before with Nate?  Needless to say, it was not very fun for any of us.  I ended up behind one of those mirrored windows that you can watch through, observing Nate fighting everything he was supposed to do tooth and nail.  I cannot count how many times he flung the blocks he was supposed to stack to the floor and yelled “nah”, or swatted at the tester’s hand.  It’s frustrating as his mom to be on the other side of the glass.  I was silently screaming, “wait, he can do that!”  I get that that’s not the point.  They don’t really give a blippity blip about what he actually can do; they care about what they can get him to do.  So instead of torturing myself, I went into the anteroom, where I was confronted by the head of neurology and a child psychiatrist who wanted to discuss the sleep study with me and see when we might be available.  They also wanted to do consents for this, and listening to what my upcoming weekend will consist of was not so pleasant.  Yep, we are doing it this weekend- might as well get it over with. 

We will be admitted to the inpatient unit at NIH on Saturday at about 5pm.  The technician, the research assistant, the nurse and the neurologist will be there for the “lead placement”.  And this is going to suck- big time.  I am well aware of that, and dreading it like the plague.  Nate will have electrodes glued to his scalp, as well as multiple other leads placed.  They have a contraption called a “papoose” that they prefer to use for lead placement because little ones fight so hard. 

 

Another family’s experience (except they were outpatient)

http://theseversons.net/2011/08/dos-donts-surviving-childs-ambulatory-eeg/

I am on the fence about this.  It looks terrible to me.  I don’t wanna, and I’m sure Nate doesn’t wanna either.  The thing is- which is worse- being restrained and getting it over with relatively quickly or trying to hold him still myself and possibly failing and having the process be much more painful.  I am trying to comfort myself with the thought that Nate loves his weighted blanket, and I just bought him a compression vest for God’s sake.  It’s possible that the sensation of being squeezed all over may be comforting?  Well, it’s possible anyway, let’s leave it at that.

The leads will need to remain in place for 48 hours. 

Yes, that’s right, 48 hours.  This with the child who wiggled his way out of his car seat straps twice on the way to NIH today, causing me to pull over, fix the straps and firmly give him a “no, no”.  He laughed.  The neurologist today was all sunshine and flowers- we have play areas inside, you can take him to the playground, the pediatric “house” has a dinner Sunday night.  Lovely.  I pulled the research assistant aside and asked her if we can really do these things during the daytime.  Her response was “technically yes, but once he goes for those leads, you have less than 5 seconds to grab him and stop him”.  Awesome.  And that will be my full time job on Sunday.  If he pulls them off, the EEG technician will be called in (from home, on the weekend) to replace them.  He’s gonna LOVE us.  So say some prayers for both of us this weekend if you would.

Anyway, they finished the assessments, confirmed that it puts him at a 13-14 month age level for speech, and that gasp, he does have autism, and we were officially “qualified” for the study.  I was asked “are you okay?”  Umm, yes, he was diagnosed two years ago….I think I’ll be fine.  It was sweet really, and I appreciate that they were empathetic, but maybe they don’t know what I know.  Which is what I have said before- these assessments are worthless for kids with autism.  They can’t be compared to what a “typical” kid would be doing, because they are NOT typical kids!  These assessments cannot measure Nathan’s progress- him leading me around to what he wants, using the words that he has consistently and appropriately, or his improved eye contact.  There are no tests for these things.  But mommy knows, and mommy is very ok right now, he is on a good path.

We then signed a third set of consents, for the actual drug study.  After the sleep study is done on Monday, if there is no seizure activity Nate will undergo another battery of tests-  blood, urine, ecg, physical, etc.  If these come out ok, they actually mail the drug to our home to avoid an unnecessary trip, which is nice.  Thus, the consents needed to be signed now.  This was the “big one”.  The patient advocate, the head of the study, the nurse, psychiatrist, child psychologist, research assistant, and the pope were all there.  Just checking to see if you were paying attention. J  We went over everything and I am as comfortable as I am going to be.  All systems are go.

I am scared this time around, mainly because of the trauma that having the sleep study will likely cause for both of us.  And as usual I find myself asking if we need to do this.  The bottom line is this- even if Nate doesn’t qualify for the study, the sleep study data is invaluable, and they will give it to us.  It will tell us if he is having seizure activity or irritability, things that can and should be treated.  If he does qualify for the study, the medication might help him, and at the very least, it will help autism research move forward (if we get placebo) while Nate receives all of the testing to rule our seizures.  Why are we so intent on ruling out seizure activity?

http://www.psychologytoday.com/blog/the-autism-advocate/201308/seizures-and-autism-read-silently-seizing

http://www.autismspeaks.org/family-services/epilepsy

So yes, it is important, and yes, we need to do this.  Having an EEG from NIH is worth it. 

I Think He Means It

I am getting just a wee bit giddy.  Apparently Nate intends to continue this new communication trend.  Daddy was going to give him his bath tonight so I could vacuum and mop before it got too late.  We told him "time to go up for bath".  John was standing at the top of the steps beckoning to him.  He turned around, walked to the couch, grabbed both of my hands and pulled me up and proceeded to steer me to the stairs....

Driving Without a License

OK, I can’t hold it in any longer.  Nate is doing really well the past week or two.  Not too many “new” words, but the ones he uses, he is definitely using much more consistently.  We are much more easily able to discern what he wants, although it’s still a challenge at times.

Here is the funniest and most significant thing that has changed.  Nate has been pulling us out of our chairs to get his cup or food for quite a while.  This weekend has been somewhat challenging for him on multiple fronts.  First of all, we have been on the go quite a bit, which is always unsettling to him.  But more importantly, the places we have gone and the people we have seen are familiar to him because they are the places where I take him and people he sees when I leave.  Friday night we went to Cisco Center for a little get together.  Saturday we went to my parents, where I left him for a sleep over last month, and then we headed to a birthday party which the Director (whoot) of Cisco Center was also attending.  He was not taking any chances- kid was glued to my side at each place.  It was really cute and endearing after the crying jags that occurred when we arrived at each place.  When we were at Cisco Center he was chasing me everywhere.  But yesterday he took a different, really awesome approach. 

He drove me.

Not a joke, it’s like I was his boat and my arm was his rudder.  Especially at my parent’s house.  If I wasn’t where he wanted me to be, he grabbed my hand and steered me in that direction.  He pulled me to the garage stairs and then stood behind me and pushed my legs until I walked up them.  He pulled me to the family room, in front of the couch, and then pushed my knees until I sat down.  At lunch he kept grabbing my hand and putting it on the dish that contained the food that he wanted.  He acted similarly at the party as well.  This is the first time he has done this.  He was making the effort to communicate with me, and for the most part it was not food based (which is always his greatest motivator).  He was letting me know where he wanted me to be, and more importantly he was expressing his needs.  I wasn’t wondering if he was truly content with what we were doing, he was letting me know- very decisively. 

It has even continued some at home today, although of course this is a much more comfortable setting for him.  He and I were eating lunch and John walked into the room.  All I had given Nate was a “crummy sandwich” and he was clearly not pleased about this.  But he was strapped into his booster and unable to lead anyone to what he wanted.  So instead, he started pushing John away from him and saying “go”.  Then, “I want chips, go”.  He told John to go get him chips.

We are seeing progress.  Actual, tangible progress.

A Small Step for Nathan= An Awesome Day for Mommy

I haven't been mentioning Nate's "progress" much lately.  I don't want to jinx myself.  So I am still not going to go into much detail about what we are seeing or not seeing.  Instead I am going to tell you a happy little story:

When Nate was about 19 months old and Infants and Toddlers first came to our home for the initial therapy- the therapist was able to ellicit one word from him- she would say "ready, set", and Nate would say "go!".  Then he stopped.  Then he started.  Then he stopped.  He has done this off and on for the last two years, but it's been about 6 months since I heard it last.

I was feeling inspired to push him a bit this morning while we were outside waiting for his bus.  So I started saying this each time he was "gearing up" to run a lap. I dragged out the period between set and go a little more each time, and it did seem like he was pausing to wait for the word before he started running again.  So the next time we did it, I dropped "go" just to see what would happen.  Did he say it?  He sure did!  This alone makes me very happy, it's always nice to see something click, especially after such a lapse.  But it gets better; as we went on, he kept saying it, but he LOOKED AT ME like "lady are ya gonna say it?" each time before he finally said it.  He was totally checking in with me, and clearly he totally got the concept because he never ran before the word "go".  I know all the parents with nonverbal kids out there are cheering right now- in fact I think I hear them....

Short but very sweet.  Happy Friday!

My Reluctant Fish

When I applied for grants over the summer, one of the services I applied for was special needs swimming lessons for Jack.  At first glance it may seem as though he would be fine in regular swim lessons, however we have tried that and let's just say it didn't go so well. 

The group nature of the activity was not a good fit, and honestly even though he is upright, running and walking, he actually has some significant gross and fine motor deficits.  Along with insecurity- not knowing where his body is in space.  I wanted him to have at least a good 6 week session or two of this (one on one lessons with a specialized instructor) and then maybe we can move back to regular lessons.  However, these lessons are expensive, so that is why I applied some of our funding to this area. 

So you can imagine my dismay when before the 4^th lesson last week, Jack was telling me he didn’t want to go back.  I was that mom “oh no, you WILL go back”.  I may not be paying out of pocket for the lessons, but believe me, I did the work to get that funding, and it will be utilized.  Last week he got his wish because when he arrived at his lesson there was a code brown and the pool had to be cleaned.  His lesson was cancelled.  Well, he started in again today after school, telling me he didn’t want to go, didn’t want to put his face in, go under, etc.  He has done this for a long time when he is at the regular pool so I was a bit perplexed.  So I asked him why.  His answer?  He can’t talk when he’s under water.  This from the boy who is literally incapable of NOT talking during any given moment of the day.  Clearly this compulsion is stronger than I thought if the idea of refraining from talking for a few minutes gives him this kind of anxiety and dread. 

This is where the brainteaser parenting comes into play.  Everything needs to be turned into an “opportunity” surrounding one of his areas of interest.  Not to brag, but I’m a pro.  I told him that if he didn’t learn how to go under water and speak “bubble language” that he would never be able to communicate with all of the animals in the ocean.  If you recall, about a year ago he was all about whales, crabs, lobsters, hermit crabs and sharks.  He asked if he would be able to say “real words” while he was under, so I demonstrated a very, umm, odd “hwelllo” in bubble talk.   He seemed satisfied with this answer, but was still reluctant.  His instructor also wanted him to start wearing goggles this week since he will be going under quite a bit more, and he was vehemently opposed to this.  Until I told him they were fighter pilot goggles. Then he wouldn’t take them off- score!

He did an absolutely AWESOME job at his lesson!  He went under, jumped in with and without pads, practiced some basic strokes and floated on his back (ok well only for a second).  I had told his instructor at the beginning of his lesson about the going under water thing and the pilot goggles thing, so she was able to keep that going.  At the end of the lesson she told me that Jack was making some funny sounds when he went under and was blowing bubbles.  I repeated my ridiculous hello to her and said “like that??”  She said, yes, exactly like that!  The boy is determined to speak no matter where he is. 

 

And no the irony of that situation is not lost on me.  Because while he was doing this, I was in the viewing area with Nate toiling to get him to say water- and he DID say it during bath time tonight.  I swear to God there are times that I think he sits there and bides his time, and then decides, oh all right, I’ll throw the old girl a bone and comes out with it “water”.  But only once- mommy has to work for those words.  Maybe this is a load of crap- but if you saw the smug expression on my sweet boy’s face when this is happening, you might just agree with me.

Someone wanted to join in the fun....

NIH Study Day #1

Today was my first visit regarding the new study for Nate.  The study is with the NIH, so I have to say that I was a bit nervous driving down around DC after what happened at the Naval Yard this morning.  I needn’t have worried, as NIH is basically a medical Fort Knox!  I find that extremely comforting as some of the research that occurs is not appreciated by more conservative groups, and I can see that they could be a target in those cases.  The only other time I visited the NIH was for a job interview about 2 years ago.  It was during that horrible period when both boys were just diagnosed and we were scrambling to figure out and provide what they needed.  I had this brilliant idea that I should work weekend option and interviewed for a job there.  When I stepped back and thought about it I realized that since both boys would be eligible for early intervention programs that were 5 days a week, working weekends would actually be counterproductive.  Anyway, it was much easier to get onto campus as a potential employee than as a patient.  To get to the appointment I had to drive to a security check point where I had to open all doors of the car as well as the trunk, and the car was searched.  While this was going on, I was taken to the security building where I went through a metal detector and had my driver’s license scrutinized and scanned.  After this I was given a badge for the day.  When I got to the clinical research building I went through further security.  And for those of you who saw my comment on Facebook- I have to say that I truly was disappointed that with this level of attention to detail I found no toilet paper in the public bathroom.  Really??  Ha

Today was the parent interview portion of the screening.  When I drove in today I was seriously questioning what on earth they would have left to ask me as I filled out 2 written assessments and 15 online assessments before the appointment.  This took hours.  But somehow, we managed to fill up three and a half hours with even more questions this afternoon.  My migraine is trying to make a comeback.  These researchers are far and away the most friendly I have encountered in my travels of the last 4 years.  Things were presented in a very conversational format, not just question, question, question.  I know for a fact that the assessments we did today were the exact same ones I did for the SEED study back in May.  I know because today’s researcher used to work on the SEED study and told me.  She knew the developmental pediatrician who diagnosed Nate personally, as well as the primary researcher on the memantine study Jack is currently enrolled in.  All of these things definitely gave me a greater level of comfort.  I won’t go so far as to say that I “enjoyed” doing this interview, that would be stretching it, but it was the least unpleasant one to date and I didn’t cry.  That’s a big milestone for ME!

This is how structured the NIH is.  Today I signed consents- but not for the study.  I signed consents for the assessment to determine if Nate is eligible for the study.  If he is eligible then we will go through the second set of consents.  I have never been through this type of process, but I believe that since it is through the government all I’s must be dotted and T’s crossed even more than usual. 

My brain is fried for sure.  The next step is the actual assessment of Nate, which is next Wednesday morning.  No matter what way you slice it, watching your kid struggle in a testing situation is awful.  That screening will honestly just “confirm” the autism diagnosis, which sadly is a sure thing.  So they already broached the subject of the third screening step, which is a sleep study- a 2 night sleep study, in which Nate and I would be inpatient in the clinical center and Nate would have a continuous EEG.   I would normally kill to have that kind of one on one time with Nate, but contained in one room?  With a gazillion electrodes?  Eh, not so much.  Here is the best part of the study screening- all clinically significant data gathered, whether assessment results, lab results, or EEG results are shared with the parents.  So if Nate shows any seizure activity on the EEG we will be made aware immediately and actually this would exclude him from this particular study.  To date this is one of the few stones we have left unturned.  Nate does not have any visible seizures, but seizure activity in people with autism is actually quite common.  Just being able to have EEG data from such a lengthy period of time is worth the inconvenience of the rest of the screening.  In other words, all systems are go.  

Autism, Eating Out, and Friends

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

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

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

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

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

 

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

Finally...Some Pain Relief for Mommy

As a mom, it’s always upsetting when you feel sick or for some reason unable to care for your little guys.  My migraines really reached a breaking point for me this week, and it was time to take action (or more action).

Last week, I went to the eye doctor- check, and the dentist- check.  All was well there.  I started doing yoga- yes, me yoga!  That “time of the month” thing that makes my migraines take flight was over.  I felt like I should be in the clear.  So why did I wake up at 3am on Wednesday morning with searing pain on the left side of my head again?  No amount of imitrex/aleve/cold/hot/deep breathing was going to help this one.  There have been very few times since Jack was born that I have waved the white flag and said “honey I am out of commission”.  This was one of these times.  I even called my doctor, accepted her prescription of hydrocodone (which I haven’t taken yet) and made an appointment with the neurologist.  Luckily, I was able to see him quickly- as in 9am Thursday.  He asked a bit about my stressors and triggers and looked at me like duh lady, of course you have migraines.  Well, I know, but I can’t live like this anymore- I just don’t have time for it.  He suggested going off birth control- are ya crazy???  And anyway, these started before that did.  The only abnormal on my exam was a slightly decreased deep tendon reflex in the L arm.  He didn’t seem concerned.  He gave me a daily script for migraine prophylaxis, told me to follow up in two weeks and if things aren’t improved then it will be MRI time. Fair enough.

He prescribed amitriptyline- it’s a tricyclic antidepressant- and for that usage it’s usually dosed at 150-250mg/day, but apparently in low doses it has been very effective for migraine prophylaxis along with a slew of other chronic pain issues.  Have I mentioned that I am pretty drug naïve?  He prescribed 10mg.  I took it at about midnight, as it is supposed to cause drowsiness.  Umm, yep, try 24 hours of drowsiness AND dizziness.  Not very easy to focus on a computer screen when you’re dizzy.  The upside is that despite these side effects, one important thing was missing- a headache!  So that is really good news- I think I will try taking a half tonight to see if maybe that would be a better middle of the road type dose for me.  I am grateful for the relief, that’s for sure, but if I’m asleep all the time or half way there, it’s not really making me more productive now is it?

Thank you to my hubby.  He handled the duties on Thursday quite nicely, getting people ready for and off to school, and getting them to OT at night.  He DID admit that he was exhausted last night –ha.  Sometimes role reversal can be very good for a relationship- I know that after he walks a day in my shoes John usually has an increased level of respect for what I do.  Hmmm…..maybe I should try going to the office sometime?

O is for Obstinate- And It's Mommy's Middle Name

Nathan.

So we ALL want him to talk right?  I know that any type of communication is a positive thing, especially at this point, but I selfishly continue to want this communication to be speech.  I am picky. 

I received an email yesterday from Nate’s speech therapist at school that really upset me.  I don’t think that it technically “should” have, but as our marriage counselor says, there’s really no reason to “should” all over myself, I feel what I feel.  Anyway, it was a fairly routine correspondence, Nate’s next set of evaluations and IEP meeting are coming up (oh goody) and she was requesting permission to have an “assistive technology” evaluation done.  Basically, the school would provide him, if it is determined to be necessary, with a type of computer device to assist with communication.  I know that for many people this type of assistance doesn’t just “fall into their laps” like this.  Although truly we have done a ton of work to get to this point.  I should be and am grateful for all of the help we receive.  I will take anything they are willing to give him; I try to keep in mind that it is much easier to keep services that are given when a child is small than it is to obtain them as the child gets older.  Jack is a prime example of that. 

So what the heck is my problem?  This email made me cry.  Well duh, it’s just another “step”.  Another step towards accepting that Nate may not talk.  Now, in my response to the speech therapist, I broached the subject of still working on actual speech and she stated that using this device in no way means that they/we will not keep working on speech, and that this would hopefully actually be a bridge to him speaking.  But I know.  He has little “friends” with autism, the same age and older.  They are not whipping this device out for them.  Just my Nate.  And I refuse to accept it.  Not the device itself but the possibility of no speech.  I think that I will likely consult the advocate we used with Jack last year, who is wonderful, not because I think that Nate is being denied services that he needs, but because I want to make sure all of the bases are covered.  It’s worth the small investment to have that peace of mind. 

This revelation has kicked me into high gear.  Maybe I needed it, who knows.  I feel like I am working hard, but there is always something I’m forgetting.  For the past two years I have wanted Nathan in private speech therapy.  We have been unable to do it; our insurance covers 60 visits a year of PT/OT and speech combined, and I have chosen to make his severe sensory issues the priority as I really do think that they interfere with his ability to do the work that speech therapy requires.  He is just too distracted.  But enough.  I am tired of allowing these restrictions drive my son’s therapies; he is not getting all that he needs.  And I plan to change that.

I am calling a private speech therapist in the morning.  I am getting an evaluation.  We should have enough visits left after his once a week OT visits to cover at least two months of speech this year, and we will have to make that work.  In terms of next year, I am looking into enrolling the boys in both my and John’s insurance plans so they have dual coverage.  I have never used my benefits because of the sky high deductible, but if there is dual coverage, the other plan will take care of that.  And my coverage, I discovered today, allows for 60 OT/PT visits per year AND 60 speech visits per year.  That would be just wonderful, but I still have to figure out the monthly costs once our open enrollment information for next year is available.  But at least I have a plan, and that feels good. 

This boy will talk, I know he wants to and I KNOW that he can.

Survival Tactics For a Successful Birthday Party Experience...

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

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

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

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

You get the point.

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

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

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

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