Tuesday, July 21, 2015

The Initial Diagnosis

Tonight I had my online seminar for school.  It was just a normal seminar, going over various speech intervention methods, nothing out of the normal.  Then my instructor asked me a simple question that did not have a simple answer.  It was one that I honestly had not been asked before and I had not thought about what the answer would be in about 4 years.

She asked if I could share how it felt to get the autism diagnosis for my sons.

Such a simple question, but the answer was so much more complicated.

I have never talked about how I felt about either of the boys' diagnosis.  Eric has discussed it somewhat in a one of our first posts here, but I have not.

I realized in that moment that many families face the impending diagnosis all on their own.  No matter how prepared they may or may not be for that diagnosis, we all seem to go through a battery of emotions and feelings.  Some of us go through them in split seconds, some of us it takes a little longer to process them.  But we all seem to go through similar thoughts and feelings shortly after the diagnosis is given.

I feel that if I am able to contribute anything, it would be to let other families know that they are not alone in these feelings, as I know some carry guilt of how they felt in that moment.  I believe it can help to know that others feel the same or similar.

Taterbutt was diagnosed when he was the young age of 16 months.  We had noticed that he stopped being him in a way.  He stopped crawling.  He stopped talking.  He stopped interacting with us, other than screaming when we would touch him.  All he wanted to do all day was sit on the couch, spinning the wheels of a toy car, kicking his feet, flapping his hands, and grunting.  All the while being completely naked.  I could not put even a diaper on him without him screaming like it was burning him alive.

He was no longer the happy, smiling, talkative little guy we knew.  It was like something had taken him away.

So we did our research on what could be going on.  Both Eric and I had experience with autism and knew what some of the signs were.  So we researched through several different sources and kept coming to the same conclusion, Taterbutt had signs of autism.  We printed off the M-CHAT (modified checklist for autism in toddlers), filled it out, and brought it with us to his pediatrician.  The doctor did not think he had autism, he kept deflecting our concerns with, "he's just a late bloomer."  We pulled out the M-CHAT, and all of a sudden his tune changed.  He divulged that he honestly did not know much about autism, but with the score from the M-CHAT he had to agree that Taterbutt needed further assessment.  So, in went a referral for an assessment at the hospital from a developmental pediatrician.

The day finally came, only two weeks later but felt like a million years, for the assessment.  We walked into the room, a big room with lots of toys and distractions.  At first it was just us four, Eric, Taterbutt, Mister Fister, and myself.  Then in came the developmental pediatrician and occupational therapist.  Upon introductions, the developmental pediatrician (we'll go with Dr. S from here on out) told us that because of Taterbutt's age, we probably would not get a diagnosis today.

Four long hours later, with a hand that hurt from having to fill out multiple extremely long questionnaires, Dr. S finally gave us the results.  He told us that we needed to go to the book store and not only pick up books on autism, but also on sensory processing disorder, and oppositional defiant disorder because our Taterbutt has all three.

I knew that was coming, I knew it from the moment I stepped into that room.  But nothing could have prepared me for how I felt hearing the doctor tell us that our son had autism, let alone the other diagnoses accompanying it.

At first, I was happy.  We finally had a diagnosis, we could finally get him the intervention services he needed.  Then came the grief.  The grief over what my hopes and dreams had been for him.  He would not be a typical kid.  We would never be a typical family.  Then the thought of, "well, what about Scott?!"  Then came the thought, "what if I did this?"  I kept thinking, "if I did (insert anything) more or if I was a happier (I dealt with postpartum depression after having Mister Fister), would he be like this?"  I knew deep down that I could not have done anything to keep the diagnosis from happening, but those thoughts still plagued me for a few months after the diagnosis.  Even though I had those thoughts, I still jumped feet first into the world of autism and what to do for Taterbutt to help him.  We got him started in speech and OT, and eventually got the ball rolling for our insurance to cover ABA.  I even decided to go back to school for psychology in an attempt to better understand autism, and therefore Taterbutt.

After a few days, I stopped grieving for the child I never had.  Because, lets face it, Taterbutt is and always has been perfect.  I started seeing him in a new light, and therefore no longer allowed his meltdowns to affect me like they did before.  It broke me out of my own shell and gave me something to strive for.  Eric and I had been drifting apart at the time before the diagnosis.  But then in the aftermath, we found a new hope for each other.  We were not perfect again, we still are not, it is a process, but you keep fighting the good fight and you lean on each other.

Now I would not change anything.  Taterbutt is an amazing little guy.  So talkative, sometimes too much so, or too inappropriate (but hey, that's what entertains me throughout the day).  He loves wearing clothes, they just have to be of a particular fabric, which is fine and able to be done.  He loves to play with others, in fact he will seek them out now.  He does have quirks and is hard to get along with sometimes, and has multiple massive meltdowns a day still, but that is the joy of autism.

And I would not change it for anything.

Fast forward a year and a half from Taterbutt's diagnosis and we have the beginning of Mister Fisters.

Mister Fister did not have as many prominent signs of autism as Taterbutt did.  He did not regress like Taterbutt.  His hand flapping was more hand twisting.  He did not like clothes at all, but could tolerate diapers.  He was a colicky baby, so his meltdowns, we thought at first were just him being fussy*.  He was delayed in speech and language, as well as he did not have eye contact.  He hated people.  Literally hated people, unless you were Eric, Taterbutt, or myself.  Until Taterbutt's newest ABA therapist walked in, he would not warm up to anyone.  Then when she walked in, he immediately climbed in her lap while she was working with Taterbutt.  It surprised me as well as her and her BCBA.
*Side note - I was recently asked why Mister Fister is Mister Fister's nickname.  He was an incredibly colicky baby.  I literally always had to wear him, even in the shower, and that only lessened how much he screamed.  We use to call him Mister Fussbutt, but we figured Mister Fister is slightly more socially appropriate.

After a few months, he still had not warmed up to Taterbutt's other ABA therapist, or his own speech and OT therapists.  Finally, Taterbutt's BCBA asked us if we had concerns over Mister Fister.  We said yes, but that we were not for sure if his behaviors were learned from Taterbutt, or if that was literally just Mister Fister.  She confirmed our suspicions and told us that she had her own concerns over her observations of him.  When we brought hers and our own suspicions up to the boys' other therapists and doctors, they also stated they had some concerns as well.

So we made an appointment with Taterbutt's developmental pediatrician.  We had moved twice since Taterbutt was diagnosed, so this was not the same one who diagnosed him.

When the day of the appointment came.   We were more prepared than we were with Taterbutt's, if that can happen.  The developmental pediatrician did the regular battery of assessments.  Lots of questions and questionnaires for me, as well as observations and tasks for Mister Fister.  After the assessment, the doctor looked at me and said, "I believe he is autistic, but I would like to wait to diagnose him until he is 4 or 5 so I can test his IQ because I believe he is mentally handicapped."  I believe my mouth literally hung open.  I was speechless.  Not that I have anything against it if Mister Fister was mentally handicapped, but to wait 2 to 3 years to diagnose something like autism or a mental disability?  To me I was shocked a doctor would suggest that.  I thought it was better to have the diagnosis early so you can start intervention earlier, so the child can have a little bit better chance at life.

When I told all the boys' therapists what the doctor had said, they were all just as angry as I was.  They also urged me to get a second opinion.  And so we did.

When the day came for our intake appointment with the clinic we chose for our second opinion, we were nervous.  What if they said the same thing the other doctor did?  Should we really be so forward on wanting a diagnosis?  Thoughts like that just kept creeping into my mind the entire time.  Until the psychologist who was performing the intake assessment told me that the previous doctor was a crock.  That Mister Fister had several red flags for autism, but none for having a mental handicap; and even if he did, there are assessments for that at his age of just over 2 years old.  I felt relieved.  My concerns were being acknowledged and confirmed.

Just about a month later we had Mister Fisters official diagnosis, Autism.  Again, I felt relieved.  He was not learning behaviors from his brother.  Even though I believe he was and still is, but that is not the reason for his difficulties.  Both his and Taterbutt's brains process differently.  They are both at completely opposite ends of the spectrum.  They were then, and they are now.

I did not have the rush of feelings with Mister Fister's diagnosis as I did with Taterbutt's.  I believe that is because I had already dealt with all those emotions, I did not need to deal with them again.  Sure was I hoping that Mister Fister was neurotypical?  Kind of, I think everyone does.  Am I sort of glad that he is not?  Heck yes.  Life is so different with a child on the spectrum, in a way it is almost more magical.  It is more full of happiness at the little things and the big things.  You no longer take small steps for granted.  You celebrate more often.  Sure you tend to have more bad days as well, but you learn (very quickly) to not dwell on those.  Because next thing you know, your child is trying a new food, or putting a shirt on they never would have normally wore, or saying hi to a friend unprompted, or just giggling in the incredibly high pitched giggle that no one can match.

All in all, I am glad that neither of my boys are "typical." What does that mean anyways?  I have no clue.  I know that I was never a typical kid myself growing up.  Eric sure was not either judging by the stories I have been told.  Who, in all honesty, is typical anymore?

Friday, June 19, 2015

Long time no see

I realize that it has been over a year since the last post, and for that I am sorry.  I honestly did not know what to write about, we had not done anything different for the boys, and I did not think my opinion would matter anyways.  A few friends have been nagging me to start writing again, so here goes.

I have no clue where to start or what to even write about.  I am still unsure if anyone really wants to read anything I write, but I am good to give it a try.

This past year has been pretty hectic.  Taterbutt went into Kindergarten, Mister Fister went into his last year of preschool.  I stopped school, well I took a break from it.  I was stressed and I did not know if I wanted to keep going down the path I was heading down.  Now do not get me wrong, Special Education is a great place to be.  There needs to be more and more teachers who understand the special quirks of kiddos on the spectrum, as well as kiddos with other disabilities.  I just was unsure if I wanted to do that.  I felt overwhelmed and I just needed a break to clear my head and think.  I am happy to report that I am back in school, and I will get to that all in a minute.
Eric got brought down on orders and we moved this past March to Fort Bragg.  It was a huge move, I mean is any move less huge, but it was literally clear across the country.  We were all sad to leave the friends we had made the past almost 4 years at JBLM, but we knew it was time to go.
Because of the move, we re-homed our beloved Mister Boots, and it made us all incredibly sad.

 Luckily, he is in a great home with one of Mister Fister's amazing therapists and a good friend of ours.  We get updates about him all the time, and he looks incredibly happy.  The reason we decided to re-home him was, we were thinking about applying for a service dog for Mister Fister and Boots would not do well with a service dog.  Once we got the orders though, we knew that Boots would not be able to move with us because it would be too much stress on his little stressed out self.  We felt it would be kinder to him to make him a home with a familiar face and not move 3,000 miles when he hates cars.

The move has been an incredible thing for all of us.  We had a great trip where we got to see some new friends along the way and have a few adventures as well.  Eric is happier in his new job, just as stressed, but happier that he has a "regular" schedule.  We were able to get a slightly bigger house, which has been nice. The boys are no longer on top of each other, and they have plenty of room to run around in.  There is also a park right next to our housing quadplex and the boys play on it daily.  The new school the boys go to (or went to since it is summer vacation) is amazing.  The teachers they were placed with were incredible at figuring out strategies to work with the boys.
Taterbutt is so much happier here, he actually wants to go to school.  At the previous school, he was in a class of 22 kiddos and it was only one teacher with that many kiddos for a 3 hour day.  I disliked the fact that they would not place him in a full day kindergarten and they never listened to anything that I would say about Taterbutt.  He got depressed and angry.  He would be violent at home and school.  He never wanted to go to school, but could not verbalize what was going on.  Finally, the bus driver noticed that another kiddo was making fun of Taterbutt on the bus just before we moved.  See Taterbutt had been saying that he was a girl for about the past year.  At first we thought it was just pretend, but then we noticed the intensity that he held on to that belief.  He knows the difference between boys and girls, and we never had a problem letting him be who he was.  He would wear tutus and dresses, and he was happy, so we were happy to allow him to do that.  We found out after the move (once Taterbutt was calm enough he started talking to us about it) that his teacher would not let him play with any "girls" toys in the class room and dictated to him that he was a boy not a girl.  I was furious, but we had already moved and the damage had been done.  I just wish I would have been more vigilant when we noticed Taterbutt's aggressive mood swings, but the teachers assured us that everything was fine.  Oh, until it was not.  He ended up getting suspended from school about a month before we moved.  I ended up just pulling him out for the rest of the time once I was told why he was suspended:

  • He had attempted to kick a resource teacher.  
  • They told me that he did not want to sit for circle time in the classroom, but that he was participating, just not sitting down.  
  • The teacher asked him three times to sit, so he started screaming.  
  • The teacher then called the resource teacher in to remove him from class.  
  • The resource teacher then just went to grab him from behind without letting Taterbutt know that she was there, so Taterbutt kicked out.  
In my own opinion, any child would have freaked out at being grabbed from behind without knowledge, but that is just me.
Anyways, I am just glad that we are in a better school.  They are actually doing a behavior intervention plan for Taterbutt from the get go, unlike last school who never would when we asked.  They also accept that Taterbutt identifies as "a girl on the inside," in his own words; they do not abide by gender rules here, which is so nice for him.  

Mister Fister is also happy here.  He had great teachers back at JBLM, and he still talks about them every so often.  But they do field trips for preschool here, and he went to the zoo and got to feed a giraffe 3 times.  He talks about that all the time.  I do not think anything is going to trump that for a while.  Just as school was wrapping up, he got comfortable enough to show his teacher his true Mister Fister nature by running around and not being able to sit still or listen to directions.  It was fun when I started getting notes home that said he was easily distracted or he would not pay attention for anything.  On the upside, they already have great strategies to help with that for the fall when he is in Kindergarten.  Oh did I also mention that they are going to put him in Gen Ed as well? No, well he is going to be in a regular classroom with a few push in supports. I was ecstatic that they were willing to keep in in the classroom to work on all his goals.  Oh, also, did I forget to mention that the kindergarten here is full day? Yes, well it is and it is amazing.  All the kinder curriculum is hands on, their science for a month was growing butterflies.  It was all Taterbutt would talk about for months, and it was amazing.  

I was so afraid that the move would cause problems for both boys, but in all honesty, it has solved some.  Taterbutt still has aggressive outbursts, but they are fewer and farther between when they happen.  He is no longer depressed all the time, he constantly has a smile on his face.  He is able to verbalize more of his thoughts and feelings with us than he ever has.  Mister Fister is still the same Mister Fister, but he actually plays with big brother now.  He no longer hides from Taterbutt unless Taterbutt starts showing signs of getting upset.  They actually play like typical brothers, and it is amazing.  

So sometimes moves are scary and cause upsets to, well everything, but sometimes they can be for the better.  
The only one who did not have a great time with the move was Pinkerton.  

He hated the car rides.  Then when we got to the new house, he would just walk about meowing all the time, which if you know Pinkerton, he really did not meow that often.  We figured it was because he missed Mister Boots, so we started thinking we should look at getting a puppy.  We knew we wanted one that we could train as a support dog for Mr. Fister, but we wanted one that would still be a "travel size."  We looked into various breeds and were looking at breeders, when I thought I would check out some of the local shelters.  We knew we wanted a puppy and did not think I would be able to find a puppy that would fit what we were looking for.  I was wrong.  I was looking through one of the shelters' adoptable animals pages, and I found a litter of puppies that were Chinese Crested/Dachshund mix.  One of the puppies was hairless.  I knew what the temperament of Dachshund's were, my parents have a miniature one and I have been around several.  But I had not really been around Chinese Crested's before.  Once I looked up on several sites what the typical temperament for them is (protective of family, aloof and standoffish to strangers, playful, good with kids, good with other animals, but still have a strong protective streak), I thought that would be the perfect pup to bring into our family.  She would be protective of the boys and playful with them as well.  I thought she would be great to bring into our family and train as a support dog.  

We brought her home about a month ago, and she is prefect.  She is more of a Daddy's dog, but still leans to Mr. Fister already, its like she can sense that he needs her or something.  When we go to the park, she is right behind him and if he goes too far away, she barks at him and tries to herd him almost.  Her name is Hiney, and she gets along great with Pinkerton.  Most of our neighbors now know us as the weird people with a naked dog and naked cat.  And you know what, I'm good with that.   

As for school for myself, and Eric.  We both went back to school, right around move day (I know super smart of us, huh?).  Its been great though.  He is doing his associates in Health Care Management, and he actually likes his classes.  I am doing a post-bachelor's certificate in Autism Spectrum Disorders (I know, like I need a certificate in that, I live with two little boys on the spectrum).  I thought this would look better for when I want to get a job.  Through the program I have found that I am incredibly interested in the speech-language-communication side of things.  Therefore, I am changing my plan.  Instead of going for Psych, I am going to go back and do a degree in Speech Language Pathology.  This is not the first time I have thought about that.  Several of the boys' speech therapists back at JBLM would tell me that they thought I should go that route. I gave it barely a thought back then, but now that I have studied speech and communication a little more in depth, it is incredibly interesting to me and I want to learn more about it so I can help more kiddos.  Eric still has the same plan, and I think he is going to do great with it.  

Well, I think this just about brings everyone up to speed.  Hopefully I will not let another year go by without posting.  I hope to bring lots of ideas for what we do with the boys to hopefully help others out.  Please ask questions about anything.