When The Educators Need To Be Educated

I have been struggling over the last 6 weeks, trying to find a way to describe what has been going on with Jack.  I am not someone who jumps on my blog and bashes people.  I also have been repeatedly thanked for my "grace" by the school system throughout this situation, and I do want to maintain my goal of taking the high road.  However I do try to be honest about our experiences as a family.  And I do want to share what we have been going through.

Before I do, I have a confession.  When Jack first started school, and we were successful in keeping him mainstreamed for several years, I really didn’t understand what all of these other parents were talking about.  We struggled in getting Jack the help he needed because he was labeled “high functioning”, but with the help of an advocate, we were able to work through that, or at least to an acceptable extent.  So why were so many parents of special needs kids calling public school a nightmare?  Fighting so hard with staff? 

All it took was one bad experience.  As a special needs mom, my children have attended 8 different elementary schools, (and they are only 6 and 9) not because of problems, but because different programs are just housed in different places.  For the most part, we have had completely positive experiences.  Even Jack’s initial elementary school, which has a reputation for being particularly difficult on special needs families, was over all very supportive.  When he was moved to another program this January, it was not because he was failing to meet or make progress towards his IEP goals, it was because the teachers found he made the most progress in a small group setting, which this new program was said to offer for all core curriculum.  And to be fair, the program did “offer” this. 

I wish I could pinpoint what happened.  Where it all went wrong.  All I can really say is that the new school was not prepared to handle my son.  That my son went from making progress in all IEP goals in a mainstream program (since pre K), to a “more supportive environment” and his progress completely tanked, per their report.  I say per their report, because we saw a very different child at home, one who made great strides in his ABA goals, one who continued to be able to socialize with his friends from his old school with some support, one who successfully participated in an adaptive team sport, and enjoyed it!  In school?  I was told that he was not “capable” of “being with his peers”.  He was fully pulled out for all academics, and often pulled out of the pull out (to a one on one setting instead of small group).  He was isolated- not able to eat in the cafeteria at lunch, something that was NEVER an issue, not even for snack time in pre-k.  Something that my 6 year old “severely autistic” son does daily at his school, because he is supported.  His IEP progress report in June showed that he was not making adequate progress toward any IEP goals except....handwriting.  Which by the way has always been the bane of his existence.  No matter what justification was given to me, my opinion remains that the school did not want to deal with my son.  They did not like that he, as my husband so eloquently put it “upset the apple cart”.  This was a new, small program, and when I toured the school back in December I was shocked by how quiet the classroom was- my son is not quiet.  He is not naughty- but he is not quiet.  I think this was not appreciated by some of the staff.  I think his need to socialize and unfortunately disrupt some of these other children was resented.  I think that any and all possible behavioral issues were emphasized and examined under a microscope.  When your child is at home on the weekend and you ask him to go to his room and do something and suddenly for the first time in his life he responds with “is that a threat?”, it is clear that someone has been asking him that same question. 

I am not a mom who puts her son up on a pedestal.  I have always advocated for more services for him, I have recognized his struggles and taken action as much as humanly possible.  That being said, this spring was the first time I have ever experienced the feeling of my son seeming to be targeted.  Things that he would say out of frustration in his old school setting were interpreted in the worst possible way at the new school and perceived as actual threats.  And while he definitely was trying to express an emotion or frustration, it was never taken into account that he was scripting, something he has done since the age of 18 months old.  He pulls statements from programs he has watched or books he has read, and puts them into his dialogue if it seems appropriate to his situation.  When he was younger it worked against him because he was using sophisticated vocabulary and after people heard that, their expectations of his intelligence became super high.  Now it works against him again because he is not just spewing facts anymore, but also trying to find a way to express his emotions, something that is very hard for many kids on the spectrum.  He chooses a quote that sounds threatening, and is reprimanded as though it was an independent thought.  Yes, it was inappropriate, I get that.  But was it meant in the spirit in which it was received?  Ummmm, no way.  I promise that my 8 year old is not likely to seek revenge on you, BUT he does like to watch My Little Pony, and they do say that in an episode….

I mean, when he gets upset at home and cries he says “tears run down his spiny cheeks”.  No, he does not have spiny cheeks, he is quoting from a book about a little porcupine that we read when he was two years old.  He is telling me “I am sad, so I am crying.”  And I get that, so I don’t look for whiskers, or god forbid quills!

I’m not suggesting he doesn’t have any behavioral issues, because he does.  As our children get older, they are not maturing at the rate of their peers, which SHOULD be a duh for all parties involved in their care, since they are “special educators”.  Our children’s atypical behavior, while it has not changed, does stick out more than it used to.  And in a new setting- they are penalized for it.  Inappropriately.  They are judged harshly, they are treated like “problems.” What I am saying is that while it’s not fair, and it’s not right, we as parents have to prepare ourselves for this eventuality.  It should not happen, but in a situation where someone does not know, or take the time to get to know our children, it is a distinct possibility.  We went to his most recent IEP meeting (last Thursday) and it was suggested by the central representative that he would be ok in a type II special education program (which means still housed in a mainstream school, with the opportunity to interact with typical peers, as opposed to a type I, which is a separate day school).  My response was this- he absolutely should have been fine- however after his and this family’s experiences this past spring, he needs time to recover. He needs to feel supported and have time build his self-esteem.  When you are treated like an "issue” in a setting where you used to feel accepted and even loved, it can be very damaging.  We are just now, in summer school, working through his tears each morning because he does not want to go back to school.

As a parent, this is not only heartbreaking, it is maddening.  I, as Jack’s mom, have been traumatized by this experience.  My level of trust in the school system has plummeted.  I am at risk of becoming “that mom.”  The one that feels the need to drop in for “surprise visits” to ensure my son isn’t locked in a closet somewhere.  The one who calls every time my son comes home saying something negative, to make sure everything is ok.  I do not want to be “that mom”.  I never was.  But my son has the right to an education in the least restrictive environment possible, and he has the right to expect fair treatment.  And without question, he was denied both of these things this past spring.  And he is my child who can talk to me!

At the  IEP meeting with his school back in May, something was said that I will never, as a special needs mom, forget.  In the presence of the least restrictive environment specialist, the school behavioral specialist, our IEP advocate, and Jack’s BCBA, we were told that this school’s program was there to support children with learning differences.  We were told that they were not “equipped to handle autism and all the support that is needed for autism.”  Our BCBA still brings this statement up frequently- as someone who has been in special education for over 20 years, she was shocked into silence herself.  I want to say this, for the record.  None of us are- equipped to handle autism when first we encounter it.  I can assure you that John and I were not equipped to handle autism.  And yet, here we are, doing it!  Autism is being diagnosed at a head spinning rate- a rate that is increasing each and every year.  If your school does not become equipped to handle autism, you will be doing a vast number of amazing children a horrible disservice.  My son is phenomenal- and he will be back in a mainstream school in the next few years god willing.  More education for mainstream educators is clearly needed, and needed quickly.  My son did not deserve to come away from this experience feeling like he was a problem.  And it will take years to get him past this.  Equip yourselves, because if you are supposed to help children with “learning challenges”, I can guarantee you will be seeing more children with autism in your program. 

 

https://www.autismspeaks.org/blog/2016/06/21/open-letter-teachers-who-have-students-autism

 

 

 

 

 

 

When Your Child Is Special

While I am a special needs mom, that's not what I mean today.

I am talking about how special my Nate is- what an amazing little individual I have in my life.  I was sitting with him today out at lunch after a particularly successful haircut and I just had to stop myself for a minute and stare.  He is so gorgeous.  Sometimes it feels like every single thing he does has just a little magic involved 

He is just a perfect little soul.

There is an element of this feeling of awe that DOES involve autism.  I am not one of those parents who counts autism as a blessing.  But it did give me a gift.  It gave me the gift of seeing my son "return" to me.  With the absolute devastation that came when he stopped talking to us, stopped looking at us, started banging his head against the walls, came the complete joy of seeing him respond to his name, attempt to say words, jump on his exercise ball rather than engaging in self harm..

Sometimes it really does take losing something to understand just how precious it is.  Jack was an "early talker".  I can still remember a mom in our play group looking at me completely deadpan and saying, "did your 15 month old just say vacuum???  excuse me while I go shoot myself in the head!"  (she's probably cracking up right now).  I was a first time mom, I completely took Jack's speech for granted- I had no idea just how amazing it was.  Honestly, I would've been happy if he would've simmered down for a minute- pretty much all the time.

And Nate started out slower, but developmentally appropriate.  He was still on track when he received his vaccines in June at about 16 months.  I am not trying to blame vaccines, but it was at that visit that he received a standard developmental screening- he was pointing, he had enough words, he was playing with toys.  And then he wasn't.  I guess you can take that however you want.

When your child, who is supposed to be exploding with new developments, loses the skills he has and checks out- there just isn't even a word that encompasses those feelings.  Terror- maybe.  But grief is in that mix, so I guess not.  Let's just say it's life altering.

Anyway, I don't want to relive all of that, but it's kind of crucial to the story.  In regaining skills, starting to explore his world, interacting with those around him, Nate has become my own little personal daily miracle.  Every single thing he does amazes me- and I can read him like very few moms can read their kids.  Because we had to do it without words for YEARS.  It was actually a huge challenge when he started ABA, me withholding things and waiting for the word, because I could literally always see in his eyes what he wanted and needed.  We had developed our own system, and I would have to say I was the only one who could read him like this.

I am starting to be able to share that with others, because he can now go into school and communicate his needs- generally only the very basic ones, but it's such a step up...apparently last week at school, he went to the bathroom while in gym and walked down the hall announcing to everyone "I pee, I pee."  Seeing this little personality that I have always known was there emerge and be noticeable to those around him is just thrilling.  

He has spunk, he has a little attitude, and I'm convinced that his sense of humor is just as sarcastic as his mama's.  The amount of eye rolling that goes on in this house is just hilarious.  His curiousity is starting to really emerge- he will literally move my mouth just to see me talk and watch how I form my words- this is so cool to see...

He is starting to "joke".  He finds himself (and his ability to make others do things) hilarious.  He is beyond loved everywhere he goes- he has his therapists, teachers, and family wrapped around his little finger.

In short, this little boy is my hero.  I am so proud of how far he has come, and I am so hopeful about where he is headed.  I could not have said any of that two years ago.  I was too absorbed in my own grief to realize how many wonderful moments were headed my way.  I am learning, through this child to appreciate the little moments in a way I never understood before.  I have learned that every single step for him is huge, and that he can go way further than I had realized...

I LOVE this boy!!!!  He brightens every single day of my life.  

A Difficult Update

This is a very hard update to write.  And it’s written by a mama at her wits end.

I knew when Jack had to change schools that it was going to cause enormous stress for him-  that he would have difficulty coping, that he would have a burst of behavioral issues similar to what we saw at home over the summer and this fall.  I guess I didn’t realize how bad it would get.  It does not help that one of his ABA practitioners left literally 3 days before we had to tell him that he was changing schools, that the replacement person fell through and he has been without anyone 3 out of 5 days for almost a month.  That doesn’t help at all.

 

It doesn’t help that the people surrounding Jack in all areas of his day are strangers, people that don’t know his anxiety, people who don’t understand him or know his history.  People who don’t know how to work with him.  I want to scream.  I want to throw something and have a behavioral outburst.  I want a turn. 

I don’t get one.  Instead, I am expected to remain calm when I want to tell people to get their heads screwed on straight and help my son.  To smile and act normal as I explain to them that this is week TWO and by definition the period when he is going to have the hardest time, as he comes to realize that this is indeed permanent- that he will not be at school with his friends anymore, that he won’t see the aides and teacher who knew, and nurtured him for the past 4 yrs. anymore.  I am expected to deal with a bus driver who wants to sit him at the back of the bus by himself because of two verbal outbursts, when what she doesn’t realize is that this is only going to make it worse.  I am expected to be dandy with the school calling me and asking me to get him on board with doing his work this morning- to talk to him in the middle of a meltdown and “fix it”.  To deal with them telling me they are going to give him “a good month”, before we have to meet.  This in my view means, they want him out.  Already. 

 

I am expected to smile through him coming home from school crying many days, telling me that the principal told him to “cry all he wants”, and him sobbing that he never wants to go back to school again. 

And I can’t handle it.  I can’t.  Because this fall was already traumatic for all of us.  And the people surrounding him now don’t seem to be giving him a chance.  And I can’t make them do it. 

I wish I could put him in a private school.  I wish I could find people to work with him who love him.  I wish I could make his ABA be consistent, I wish that asking for someone to come 2 hrs. a day 5 days a week and do an effective job wasn’t asking for the moon.  But apparently it is. 

I am scared to keep him home, I am afraid to put him on the bus.  I am afraid to make a work call for fear the school will call.  I am afraid they won’t call when something really serious is going on. 

There are days lately that I just don’t feel like I can do this anymore.  I don’t know who in this universe thought I was strong enough to do this for two kids, but I feel like they were wrong.  I am tired and I am scared.  I don't know how to advocate for him at this point, and I don't know what to advocate for. 

 

To Those Who Have Said....

As autism parents, we all experience an incredible amount of judgment, advice, “words of wisdom” and whether intentional or not, belittling.  Sometimes it is truly a result of someone trying to make us feel better, the whole “it’s not that bad” idea.  But the bottom line is that when your children are young and newly diagnosed with autism, well, it IS that bad.  It’s awful.  I am sharing this not to make anyone feel badly who may have said these things, but to help open people’s eyes to the truth.  Autism is not a blessing in our house, it’s not.  And frankly, autism is one of the most belittled, minimized, diagnoses out there right now, between the kids who reportedly “recover”, to the kids who thrive, to the idea that it’s overdiagnosed and not that big of a deal.  Then to the, “why are you treating them, accept them as they are?” or “what else are you doing for them?”, or “why seek medical treatment when it’s a not a medical disorder?” (YES IT IS!!!!).  Everyone wants to fight over what causes autism, and talk down when they don’t agree with another’s opinion.  Everyone wants to debate what to do for children who have autism.  Nothing we do as autism parents is respected in the way that it should be.  Everything is minimized, until another child drowns, or a high schooler goes on a shooting rampage and all of the sudden people are talking about him/her being on the spectrum.  It’s a mighty fine ball of wax to be handed as young parents- because there is no way to “do” this.  There is only feeling your way and praying and finding amazing people who have been there and want to help.  It’s a big cluster fuck if I’m being honest, which apparently today I am. 

So without further ado, to those who have said:

“Of course Nathan is going to talk, he’s just a little late- I have zero doubts and you need to stop stressing so much about it”

Wrong- here we are today, at almost 6 years old.  I was right to stress because so much blood, sweat and tears have gone into getting my sweet boy to say MAMA to me, purposefully that you can’t even fathom it.  You have no idea what that feels like, to put your heart and soul into one little being every single day for 6 years and finally, finally hear him say mama (again in our case, as he said it before he regressed and then lost it).  Any parent, if their child is not developing normally, is going to stress- and they are right to!  You do not have the answers- no one does- that’s the scariest part of all. 

“Get him into early intervention, you won’t even recognize him by next year”  (said by a teacher, well meaning)

I did it- 4.5 years ago.  I recognize Nathan quite well.  He is progressing now.  But for close to 2 years, I can truthfully say that he did not.  Everyone knows a kid who had intervention and made incredible strides- it’s so awesome.  But it is not the norm.  Not every child does this.  Mine did not.  And for those two years, I was so angry at that early intervention teacher, because she said it!  I waited for it!  It didn’t happen!  And God knows I wanted it to.  I took him everywhere I could, took communication classes, took him to studies at Hopkins and NIH.  And he didn’t progress- until he did.  And no one can predict when and if that is going to happen. 

“my kid is obsessed with things too”

WRONG WRONG WRONG!!!!!! If I showed you an age progression of photos of Jack, you would see him with airplanes in his hands from age 2 until now, which is age 8.  You cannot have a conversation with my son without him bringing up his obsession at least 3 or 4 times- on a good day.  His obsessions keep him from being able to focus on anything, and I mean anything else.  He struggles in school, he struggles to eat, he struggles in therapy, he struggles to do really any tasks because his little brain cannot move past airplanes, or bulls, or whales, or crabs….it is REAL, and while your child may go through a week, or even a month of this from time to time, we are not residing on the same planet on this topic.  Not even close.

“He seems fine, and god is he cute!”

Now see, I can understand what you are trying to do here, I really can.  And I more than anyone know just how cute my kids are.  (they ARE!).  But it actually makes me feel like crap when you say he seems fine (either boy).  They are not fine, not even close.  They may be doing well today.  That being said, while you may even mean, right at this moment, the statement conveys that there is nothing going on here- and it minimizes our daily struggles. 

“My kids hate changes in their routines too!”

All children thrive on routine, I am not disputing that.  But can you go down a grocery store aisle for a second time without a full on meltdown?  I can’t.  Can you take a different route home if there is traffic?  I can’t.  Can you walk around your neighborhood a different way?  I can’t.  Can you leave the radio playing as you pull into the driveway?  I can’t!  When a therapy provider calls and says they can’t make it, or that they will be late, or that they need to change days, do you worry about how you will accommodate that change with work, or do you worry about the fact that it will likely throw your son into a tailspin?  I am B (well and A) That’s what I mean by rigid.  That. 

He’ll grow out of it (in regards to Jack)

I just can’t even.  Yes, he has learned some new strategies to help him function a little better in life.  Has he grown out of his issues?  NO.  Some of his issues have lessened, he is more capable of dealing with unusual sounds and things like that, but these issues are replaced with others, such as new behaviors and even aggression most recently.  This is not thumb sucking people, or a blankie.  This is a lifelong challenge

“You need to be stronger”

This one really sticks in my craw.  It was said to me quite a while ago, by someone who barely knows me, and knew very little of our family situation.  Oh, and they were also intoxicated lol.  It didn’t make it sting any less.  No one knows what all goes on behind closed doors, not even the people who think they know.  During the time in our lives when this was said, I can now confidently say that I was stronger than I ever could imagine being and moving heaven and earth for my family even with lots of resistance from other members of the family.  I handled the situation, quite frankly, beautifully.  Not that I did a beautiful job all the time, but trust me, if you knew the reality of everything I was facing, you would never, never say that to me again.  EVER.  I have bad days, weeks, even months.  But I put my head on my pillow every night and fall right to sleep because every single day I know I have done everything I can for my babies.   You try it—you try this life--- and then we’ll talk

Development In Slow Motion

As parents, we celebrate all of our children's accomplishments.  In the beginning, with Jack, I was completely clueless.  He was such an early talker, and as a first time mom, I was oblivious to the fact that other kids weren't developing at the same rate- until I took him to playgroup, where he would want nothing to do with the other kids, but would talk "at" all of the adults in full sentences, at 18 months.  And the other moms would say things like, "excuse me while I go kill myself".  My little boy genius.  It took awhile for me to realize that he did not truly understand most of what he was saying.  To this day, scripting is a huge part of our lives, and people who don't know him too well say how brilliant he is.  Which he is.  But that's not why he is spouting those facts out rapid fire every day.  That is his comfort, his script.

Watching him learn how to read this past couple of years has been absolutely amazing.  I now have a different point of reference, Nate.  And watching Jack learn how to read is in many ways like watching him learn how to talk all over again.  I just have a whole different level of appreciation for my kids' accomplishments these days.

Nate's development, like many kids with moderate to severe autism, has been such a roller coaster.  Two steps forward, five steps back, another five steps back, four steps forward, and then freeze frame, repeat.  My level of fear far outweighs my need for hope at this point- to put it another way I am absolutely AFRAID to hope.

At some point though, you have to make a decision.  Are you going to live your life feeling this anxiety, or are you going to do everything you can to put that fear aside and allow yourself to enjoy these positive moments, however fleeting they may be?  Can you allow yourself to enjoy your child saying new words when you know they may never say them again, or they may disappear tomorrow?  Well, it's really really tough.  But you have to find a way.  Right?

I am trying really hard to do this.  When I first started this blog, I would jump on when Nate would start saying new words, and say things like "I hope this is it!"  Maybe you haven't noticed, but I have stopped doing this.  It's too scary.  It's never "it".  I don't think there is any such thing anymore.  I don't believe anyone who tells me Nate's speech is just going to "take off."  John and I sit and talk at night about how weird it would be to have Nate walk up to us and just start talking.  It would be freaky at this point (don't get me wrong, I would get over it)

He IS developing though.  He really is.  It's just in slow motion.  The accomplishments are things that with Jack, I never even noticed.  But they are there, and now I have to admit it.  It is absolutely fascinating.  For instance, Nate is obsessed with peek a boo right now.  And it's not the object permanence thing, it is the interaction piece.  He LOVES to see your reaction, to be surprised, to do it again and again.  This may seem like a small thing, but it is not.  It is Nate realizing his actions can have an impact, that he can affect his environment.  Yesterday he hid behind my bedroom door when it was time to go downstairs in the morning.  I found him laughing hysterically, hiding.  He knew he was going to surprise me and was anticipating it.  Now, he is super interested in doors- he stood in his bedroom this morning opening the door, looking behind it, closing it, getting down on his knees and looking under it.  It's like it's the first time he has ever realized the impact of a door, even though he has been opening and closing them for a long time.

Watching Nate finally notice his environment like this-  it's just crazy.  When Nate hits a milestone like this, my joy almost happens in reverse.  It's like- wait, oh my gosh, I never even realized he wasn't noticing this before.  I can't believe he wasn't noticing this before!  But wait, he is noticing it now!  And for now, that is enough.  

A Gift

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

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

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

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

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

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

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

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

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

Another Visit to NIH, Another Sleepless Night- Continuing the Aricept Study

It’s been a busy week!  This past Friday was Nate’s one year study visit at NIH.  This was follow up for the trial of aricept that he was on for 6 months- from last October until this past April.  They will continue to follow him through next April.  This meant that we had to go through the full battery of tests…again. All the assessments, 5 paper surveys for me, a two hour interview, physical exam and tests, and the sleep study.  I dread these appointments for weeks.  I just hate them.  The mornings are not so horrible- it’s nice to have some one on one time with Nate- in the car, between tests, at lunch.  I consider it a bit of special time- we both have such jam packed schedules that it’s a rarity to have just mommy and Natey time, so that is nice.  The sleep study?  It’s the bane of my and Nate’s existence at this point- it SUCKS the first time, and the third time?  Yeah, it really sucks.

I think I may have to call our most recent visit the worst one to date.  It started with in insane day at work the day before, getting ready to take the day “off” HA!  I was working on cases after the kids went to bed, and that’s really unusual fortunately.  Just one of those days.

The next morning was nothing short of a circus.  I mean seriously, cue the music.  We actually left just barely in time to get to NIH- those of you who know me personally know that this is unheard of for me- I am chronically early.  It’s just me.  So OF COURSE we hit ridiculous traffic going to DC- it’s always ridiculous but on Friday morning it took me 40 minutes just to go down a ramp to get onto a highway (95 for the locals).  So I called to let the staff know we would be late- this appointment involves approximately 10 people- MD’s, PhDs, child therapists, and research assistants.  So yeah, I felt like crap about that.  Luckily, the DC beltway was better, and I pulled into NIH a mere 15 minutes late- not bad.  Now back at our first visit a year ago, both Nate and I had to bring birth certificates and social security cards and go through preliminary background checks so that we could get long term id’s to get on campus.  If you don’t have a long term id, when you pull onto campus you have to go to a security building, your car is searched, you have to get out of the car, go inside, present your multiple forms of id and go through a metal detector.  Then they will allow you onto campus.  Anyway, I pull up to swipe my id, and it beeps.  Hmmm that’s odd, I try again- beep.  I called the security guard over and he told me that my long term id expired on 9/30/14 (it was October 3^rd).  Fanfreakingtastic.  I would be relegated to multiple searches now.  So I had to back out of the entrance (there are separate entrances for guests) and into the other entrance to begin a process that usually takes about 30 minutes. 

When I pulled up, they asked for my driver’s license and social security card- no problem.  Then they asked for Nate’s id.  Well of course I didn’t have it, because he had a long term id to get on campus.  They started to tell me that they couldn’t let us through.  I threw as much of a hissy fit as I was brave enough to throw while surrounded by security, metal detectors, and I am sure video cameras.  I had them call the clinical center to confirm that Nate was in fact the patient and had to come inside.  After they did this, they were extremely solicitous- they scanned me outside so I wouldn’t have to get Nate out of the car- scanned him (which just cracks me up), searched the car, and then provided me with a paper pass to get on campus.  Phew.  The security guard told me to just wait for the car in front of me to pull through and I would be all set.  So we sat, and sat.  After about 5 minutes I put down my window and asked the guard if there was an issue, so he went to check.  Turns out, the car in front of us had broken down!!! You just can’t make this stuff up!  So they moved some cones, had me back up (again) and let me in a different way.  At this point I was laughing like a hyena.

All of that before the actual appointment- not a great sign - but I told myself that all the bad stuff had now already happened so we were all set.

And honestly, the appointment was pretty uneventful.  Just the usual feelings of despair that come with confirming for the fifty thousandth time that your child is in fact profoundly delayed and that thousands of hours of therapy have not, in fact, helped very much.  That pretty well sucks every time, it’s a given.  That being said, Nate was much more communicative with the evaluators- maybe not in the way they were hoping for, but his expressions were killing them (and me)- soooo funny.  They brought me in for one of the evaluations, I was to just sit in the corner and “blend in”.  Nate was wrapped around my legs which made that a tad difficult.  At one point they started calling his name (to see how many times they would have to do it before he turned to them- this is a risky game- I have gotten as high as 40 when he really wants to ignore me) they tried 5 times and then asked me to try.  I called his name once and he whipped his head around.  They tried expressing happiness through their facial expressions (to see if he would share in their enjoyment) and he looked at them like they were on crack, I did the same and had him laughing within seconds.  They pointed at pretend objects in the distance to see if he would follow their fingers, he didn’t.  They asked me to do the same- he did nothing- hey you can’t win them all!  We did our usual 15 minute “play on demand” session in the room while everyone sat outside the two sided mirror and watched.  Just for kicks I brought the book “Brown Bear, Brown Bear” and asked if I could sub it for “I love you through and through”.  I was told that would go against the standard protocol.  OK, that’s fine.  But then I go in the room and they have replaced the boring pots and pans with ones that hiss and making boiling sounds- how fair is THAT?  I bet the kids like those better, just like Nate would have liked my book better.  Oh well.  We ended up staring at the mirror with him yelling jump, and me lifting him up to see himself over and over and over again.  Hey, it was reciprocal interaction. 

After this, we had a break for lunch, then did inpatient registration, then went to the registrar for meal reimbursement and then went to get our new long term ids.  Then we went to his inpatient room so that the research neurologist could come do preliminary tests and a physical exam.  Now, anyone who has ever been admitted to the hospital (or has admitted someone) knows that the process is a flurry of activity- height, weight, vitals, medical history given to a nurse and then the doctor, menu explanations, discussion of the plan of care, and last time we were so lucky as to have the catholic chaplain drop in to discuss the blessings that autism can bring (yes that was sarcasm).  It did seriously happen though- for a good 40 minutes- and you can’t be rude, because it’s the chaplain.  Anyway, by the time the doctor came in to examine Nate he had been poked and prodded a bunch already, and through all of the tests from the morning- he was done.  She tried to listen to his heart and lungs and he repeatedly threw himself on the ground, so I did what I always do at his pediatrician’s office.  I put him on my lap facing me so she could listen on his back.  And he bit my chest- HARD.  This is about the fourth time he has done this to me recently- he has also done it to his dad, his teacher and my mother, and a few staff members at Cisco Center.  Usually it revolves around making him sit on the potty.  Here he was clearly frustrated with all the activity and his lack of control of the situation- but he broke the skin- on my chest – yow!!!

Of course after that happened the doctor was very firm that when we placed the EEG electrodes we would need to put him in the papoose (read:  straight jacket) for safety reasons.  I was in no position to argue since I was bleeding.  We were transferred upstairs to the neuro floor for the lead placement and sleep study.  The lead placement took over an hour as usual and Nate was pretty much hysterical the whole time- hiccupping and everything.  A few times he almost fell asleep.  After the placement he is usually so happy because it is done- but this time he had a complete meltdown- it took a long time to calm him down, but I did, we had dinner and then it was time for bed.  He did great when it came to falling asleep- he fell asleep a little after 8- it lulled me into a false sense of security.  And then he woke up at 9:30pm.  And stayed up- for a long time.  I didn’t look at my watch but figured he fell back asleep at around 1 or 1:30- in the morning the sleep study tech told me it was 3:30. He woke up for the day around 5:30am.  Yeah that sucked.  He just thrashed all night long- it was the darned leg leads again.  When he goes through his sleep/wake cycles and moves around he gets really upset when he feels something on his legs.  I reiterated this to the neurologist on Saturday morning and she assured me that “next time” we can leave those off.

beautiful face :-)

Which brings me to my dilemma- next time.  I just don’t know that it’s worth putting Nate (and me) through all of this again.  I don’t have to decide until next April, so it’s not really a pressing issue- but it is a difficult decision.  Is this benefitting Nate at this point?  It is reassuring to have him assessed by their team on a regular basis, but I don’t feel like they are getting any great data when they don’t get a long period of sleep from him.  And he is out of it for days afterward.  I have to decide if it’s in his best interest to go back- which I think it probably is just for the assessments if nothing else- and if I am willing to go through this all over again.  Honestly that part doesn’t much matter, as it’s just not about me.  The other aspect of the decision is honoring our commitment.  We signed consents when we began the study, and I knew what we were getting ourselves into.  But of course part of the consent states that one can quit the study at any time.  One thing I am not is a quitter- we have given them ¾ of the data they need for the study.  Am I really going to say “nah, never mind” about that last bit of information we signed up to provide?  When I know that they can give us very detailed, independent developmental assessments that can assist with Nathan’s transition to his “kindergarten equivalent” next year?  It’s not likely.  We entered this study for two reasons- first in the hopes that the actual drug in the trial would help him, and second, to provide Nathan access to some of the best qualified professionals in the area.   I think that we need to follow through.  But I am allowed to whine and say I don’t want to, right? 

We made it home.  We slept all of Saturday afternoon, woke up to eat, and went right back to bed.  We survived.  Until next time NIH!

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.

Autism, Limited Speech, and Potty Training.....Oh My

This special task can also be described as driving yourself to the brink of insanity all while making your sweet four year old sick of your face.  Or, in my case it could also be called what I did on my very brief summer vacation.  Sigh. 

I have been psyching myself up for this for months.  I have read so many books, not on potty training typical kids, but on potty training special needs kids.  OK, I just laughed my ass off at myself.  I just said “I read so many books” with a straight face. Ha.  I will never forget when my brother in law and sister in law were first pregnant I took a bunch of books we tried with Jack over to them since we weren’t using them anymore.  I think I kind of shocked them with the variety of topics.  It never occurred to me that maybe, just maybe, it was an absurd number.   That maybe most people get, What to Expect When You’re Expecting, and they’re done with it.  Oops.  We had like 30 books by then, I only brought a handful.  Most were about getting your baby to sleep.  Ask me if any of them worked.  So excuse me while I laugh at myself for a moment. 

Anyhow, I read books, my mother sent me a “helpful” power point (sorry mom, but well, ha), but really what I needed to do was steel myself emotionally for quite a process.  It is a well-known fact that kids with autism are extremely difficult to potty train, due to sensory issues, developmental delays (i.e., lack of control of bodily functions) and difficulty communicating.  Nate’s biggest issue is definitely the communication aspect.  We had super difficult sensory challenges with Jack, and we do not have those with Nate, so I can thank God for that.   I developed my “plan” and scheduled a weekend to start, then took the following Monday and Tuesday off so that Nate and I would have 4 solid days to just stay home and work on this with no interruptions.  I resolved to start with taking him every 15 minutes.  Yes, you heard that right, every 15 minutes.  My goal was to try and catch him every single time he went and reward and praise him copiously, thinking that the more positive reinforcement I was able to give him, the more the concept would sink in.

Well here’s the thing, my kid is a camel.  The child pees 3-4 times a day TOPS.  And no I am not kidding.  And still, with every 15 minutes (ok, well we increased to every 20 minutes after 2 days, with 5 minutes on the potty, then 20 minutes in between) we had….drumroll…..4 pee pee successes in 4 DAYS.  4.  4.  I said 4.  And mommy was entering a type of potty psychosis that no one ever wants to see.  Ever.  I am a very goal oriented person and was spending quite a lot of time blaming myself for “missing” opportunities, when in reality, I’m pretty sure Nate was sneaking away to go. I ended up with one of the worst migraines I have had this year.   On the third day, I found a video social story that made a big difference for us.  I am not going to say it will make a huge difference for everyone, but Nate is an extremely visual guy, and my concern was that despite all of the hoopla we were making about the potty, all the books, all the demos, etc., he didn’t understand what he was actually supposed to DO on the potty. This app gives you the opportunity to make the child look like him, and has the child walk through the potty steps, and it uses language that is very much on his level.  He loves to watch it, and I think he understood a bit better after this. 

http://www.avakid.com/

On Wednesday, I had to take him back to Cisco Center, I had to go back to work, and I really just didn’t have any choice.  I put him in a pull up and talked to the instructors, who agreed to at least try the potty once an hour.  I had zero expectations and figured we would just try again over the weekend.  And then at about noon I got a text---- “success!”  And I burst into tears.  When I went to pick him up at about 3, he hadn’t gone again the whole day- typical Nate- he had an accident the minute we walked in the door, but frankly I didn’t care.  The next day, he went right before we left the house, and around noon I got the same text “success” again- picked him up at around 4 and he had been dry all afternoon- got him to the potty right after we walked in the door and WE had success again!  Then success again before bedtime.  Which means….he stayed dry all day!!!  Now he had an accident yesterday, and I don’t anticipate we will be consistently dry for quite a while, but he is showing signs that he is “getting it” and we will take it.  And we will keep going- hourly for now.  And I am just going to have to chill out.  If we miss an opportunity it is not the end of the world- this is a marathon not a sprint.  We will get there.  

Layers- Of Progress and Stress

Watching Nathan’s progress is like peeling away the layers of an onion.  Every week now I feel like a new little piece of him is showing itself.  Some things only John and I would notice, like when he went running at John with the remote the other day shouting “baby baby” and it turned out he wanted the dino episode with the baby dinosaurs in it.  Or when we were going through the Chick Fil-A drive thru and I asked him if he wanted chicken or he wanted fries and he said drink.  (Independent answer to a question, not even one of the options presented, yet relevant).  But the change is there.

The interventions remain intense.  And incredibly draining for me.  I would do this all over again, every single day of work is worth it, and I am putting on a brave face day to day, but the truth is, I am exhausted and very burnt out.  I cry at the drop of a pin and adding one more stressor just pushes me right over the edge.  Such as when I drove Jack to camp and discovered he had a field trip we knew nothing about (which is fine except he needed his “uniform” and I needed to drive back like a bat out of hell to get it there in time) or when the melatonin was missing at bedtime.  And that was just in one day.  Both of those incidents provoked tears- such small stuff.  The problem is people don’t realize just how on edge I am.  I have gotten pretty good at doing my crying behind closed doors and not dumping my problems onto other stressed out individuals.  The unfortunate result is that no one knows I am having a hard time, and no one asks.  I feel alone, and on top of that, because I seem “together” I find myself a shoulder for others.  And I want to be there- and yet right now- I am honestly all tapped out.  The amount of work that I have to do with the boys at home is just so incredibly overwhelming.

Stress definitely exists in layers, much like Nate’s autism symptoms, only mine are building as his are peeling away.  At the core is the stress of knowing my children have these difficulties and will face challenges throughout their lives- this never ever goes away.  And as one moves outward, there are the financial stresses of autism, the time stressors of autism, my job, Nathan hitting me and my fear that it will get worse as he grows, my marriage, everyone else’s problems, my daily housework, the kid’s minute to minute medication needs, my relationships, and finally if there is any room, that really thin layer that goes rotten and falls off first is my well-being. 

Yesterday I woke up with blurred vision and intense pain on the left side of my head.  Although bad, this is usually the type of thing I just push through.  After I got Nate off to school, and Jack off to camp and was trying to sit through the pain and wait for the medications to kick in so I could get to work, it hit me.  I have not allowed myself a sick day or day to myself for that matter in over a year- every single day has been for a doctor appointment for the boys, or a sick/snow day for the boys or for another member of my family who needed me.  No wonder.  And that’s with at least 3-4 headache days a week.   No wonder I am at my wits end.  So yesterday I allowed myself a bit of a nervous breakdown.  I can’t say I really feel “better” today- maybe slightly less tired, already looking forward to our home visit with the DDA this week to be placed on their wait list to hopefully get some financial assistance somewhere sometime in the future.  I guess the point is that I finally did it for me.   If I don’t do that every once in a while, I AM going to break.