MBA Mommy

Part MBA, Part MRS, Part MOM…..All ME

Hurry Up and Wait (part 2 of our journey with Asperger’s)

Posted by mbamommy on July 21, 2010

Confused as to how you got here?  Start here.  Come back here.  And then finish off here.

(Get comfortable, this is a long one)

So, a quick recap.  I’m beginning my new job.  We’ve just been made aware that there may be some ‘red flags’ with Z.  Both kids have transitioned from Mommy being at home with them all the time to being at a daycare/preschool all day.  J is doing a bang up job supporting me and taking on more of the home-load.  Seriously, he did an amazing job supporting me.  The new job was challenging; long hours, lots of ramp up, several weekends.  Luckily his job was pretty slow in comparison so he was able to step up with the kiddies and allow me to work later and do what I needed to be successful (thanks, J!).

The transition for the littles didn’t go very smoothly.  I told Z’s teachers and the center directors about the previous teacher’s concerns.  I shared her report with them and told them I still wasn’t convinced there was anything wrong (denial is a powerful thing).  But, would they please keep me up to speed on any challenges they have with him or if they saw anything of concern.  We agreed to give him a few weeks to settle in before moving forward with any calls to Project Enlightenment for further evaluation.  Within 4 weeks, they came to me and said, Please, call Project.  We need help.  He’s acting out, refusing to listen to us, kicking, throwing chairs, throwing toys, runing away when we try to talk to him and disrupting other kids.  He even spit in his teacher’s face and was sent to the director’s office.  My 2.5 year old….already being sent to the director’s office.  One of his teacher’s put it best when she said, “Z’s like all little boys.  They’re defiant, they break rules, they’re physical.  He’s just amplified.”

OK….time for action.

We set up a time for Project to come out and evaluate Z at school and subsequently filled out the first of MANY questionnaires/rating scales.  At this point, J and I were doing them together (although that changed quickly given the sheer number we filled out), analyzing each question, discussing where we truly thought Z fell and being annoyed with the “gray” of all the scales: Does your son do X, Y, and Z: “Sometimes”, “Often”, “All of the Time”, “Almost Never”. Both of us being MBA’s, we like black and white much better.  Given we didn’t think there was anything wrong with him just a few weeks ago, we weren’t even sure what exactly we were supposed to be concerned about, much less how insistent we needed to sound the alarm.  No matter, once the ratings were scored there was enough of a concern that Project suggested we come in for a full evaluation with a speech therapist and a child psychologist.  Great! Let’s do it.  Well, first available date was February.  And so the wait began.

Z & J went to Colorado for Thanksgiving.  We decided to cancel my and S’s trip because she had an ear infection (the 4th or 5th in as many weeks), was getting antibiotic shots daily from the pediatrician and we just couldn’t justify putting her, us or our extended family through the torture of a sick toddler after flying (she eventually got tubes in her ears in December).  And I spent a week alone with S….a sick S who had an ear infection…..S, the one we thought was the difficult one.  And she was so easy.  So loving.  Without the intensity of Z there she and I both relaxed.  She didn’t cry nearly as much as she usually does and her funny little personality started coming out.

There were 2 huge takeaways from that week.  First, I started reading Out-of-Sync Child and the similarities between the books’ descriptions of kids with sensory issues and Z’s behavior blew me away.  I kept calling J to read a passage or marvel at how the author, Carol Stock Kranowitz, was describing our son.  The second takeaway was when S and I went to a friend’s house for Thanksgiving dinner.  There were a ton of kids running around and S just hung out with them, played with them, watched them, did her thing.  And, I hung out with the parents, chatting, having a glass of wine and keeping one eye on S.  It was so easy.  So relaxing.  So different from the last time I was at this friend’s house when I had to hover over Z to make sure he didn’t climb, kick, break, eat, run away, etc etc.  And, S didn’t have a meltdown when we left.  We just left.  It was a huge eye-opener to me how difficult things had been with Z and we just thought it was the norm.  I had no idea how tense I had come to be anytime I went anywhere with the kids.  And, I had no idea how much I was not enjoying my kids until then.  Don’t get me wrong, I loved them intensely.  I just didn’t really like being around them that much.  Z was Z.  S needed more attention than she was getting because Z was so intense.  And, she reacted strongly to the power struggles between Z and I, which made her cry.  A lot.  So, here she was, ear infection and all being the sweetest little thing you could ask for.

On the flip side, J was having a helluva time with Z.  Strange place, lots of people, strange climate (it was snowing and cold afterall).  We know now it was just too much sensory overload for him.  J couldn’t get him to go outside the entire first day.  He refused to wear his jacket, gloves, snow pants, etc.  And, this is a kid who NEEDS to run around and be physical.  And he was inside.  Grandma and Grandpa took one look at him and said “J, you’re too lenient with him.  Make him put his jacket on and take him outside.”  Good advice for a normal kid.  What they didn’t know (and I can’t remember if we ever told them this story or not) was we tried to force Z into clothes one time.  We had gotten this cool flight suit made especially for Z from his aunt & uncle (who’s in the airforce) for Halloween.  He loves airplanes so why wouldn’t he love to pretend to be a pilot, right?  Wrong.  J got fed up and tried to force him into it and all hell broke loose.  That was the first and last time we’ll try something like that.  Looking back, I think of how little we knew then.  He didn’t know how to pretend.  So, to him, putting on a flight suit meant he would have to fly a plane.  Because that’s what his Uncle Mike did.  And, he didn’t know how to fly a plane.  And it scared him.

To say that our extended family was confused and concerned was an understatement.  I mean, if we don’t know what the heck’s going on with the kid, how could they, right?  All they saw was a kid misbehaving and a Dad not laying down the law.  There was lots of advice given, some solicited, most not.  There were lots of opinions and a few hurt feelings once J spoke up and said, in the nicest way possible, “Back off, we’re trying to figure this out.”  But mostly just a lot of love, a lot of uncertainty in how to act/react and a lot of unanswered questions.

That Thanksgiving was an eye-opener for me (us).  Something needed to change.  Our family was stressed and we needed help.  Fast forward through the rest of the holidays into mid-February.  I’d been on a 6 week travel stint for work.  J was totally picking up the slack and being a stellar single daddy while I was gone but the wear and tear was wearing and tearing on him.  S was still sick all the time.  And, if she wasn’t, Z was.  School was getting a little better but J and I still called each other every morning with, “How was drop off?  Who cried?  Who fought?  Did you get out of the house all in one piece?”  It was traumatic for us that even after months of going to school, drop off was still full of tears and arguments.  I loved my job but felt SO guilty leaving my children.

In mid-February, I flew home early from a business trip so I could participate in the Project evaluation.  Not the best decision for my career, but I wasn’t willing to wait another minute to have Z evaluated and there was no way in hell I’d miss it.  We met with the Project team for 2-3 hours.  They did multiple tests/ratings/games with Z, with us watching behind a 1-way mirror.  They asked us a million questions and had us fill out more questionnaires.  We watched Z with pride as he answered all the questions right.  We weren’t surprised when he refused to wear the headphones for the hearing test.  And we weren’t surprised when he started pulling down the blinds on the 1-way mirror.  Or when he ran out of the room in search of more toys.  Or when he ran over to us to get hugs and kisses.

Nor were we surprised when they told us, “Z’s complicated.  He’s got some wonderful strengths but he’s also showing some concerning behaviors.  As soon as we start thinking one thing, he’ll do something else that negates it.  No wonder you guys have been struggling with him.”  Finally!  A professional telling us it wasn’t bad parenting (although, wow, do I wish it were that easy) but that we had a ‘complicated’ child.

What did surprise us was when they said Autism.  And then Asperger’s.

Did you ever see Spanglish?  Do you remember the scene when Tea Leoni admits to Adam Sandler she’s having an affair?

AS: Hold on. I’m missing what you’re saying. You can’t keep talking…and expect me to follow it when you start the way you did.

TL: Just what did you hear?

AS: There was a crack in the planet. That was noisy. There’s an actual noise in my head. No kidding.

That’s kind of how I felt.

They had us sign a form giving permission to recommend us on to Wake County Public School System preschool services (WCPSS) for further evaluation.  They said WCPSS has 90 days to complete an evaluation once they receive the report from Project.  But, this would put us right at the end of the school year so they estimated that Z wouldn’t start any services (if he was eligible) until the fall school year.  I asked what we could do in the meantime.  Everything I’d read said the more, the earlier, the better and I wasn’t going to wait around for 6 months to start doing something.  They gave us a list of private speech and OT therapists in the area and circled the ones they thought were most relevant.  They lent us a couple books to read: Does My Child Have Autism and More Than Words, suggested we contact TEACCH, told us we could call them with any questions and they’d have their full report done within a week or two.

On the car ride home, J kept saying, “I think that went well.  I feel like we’re moving forward.  I feel really good after that.”  Well, J is definitely a glass half full kind of guy.  I, on the other hand, turned to him and said “What part of that did you think was good?!?  NONE of this is good.  They said AUTISM!!!!!!”

Now, you have to understand, even though I’ve had a fascination with Autism, I knew very little about it.  I knew Rainman.  And, I knew a former co-worker who’s son is on the spectrum.  He told me about the therapies for his son, how it was a full time job for his wife (she had to leave her job).  How that’s all they ever spoke about.  How overshadowed their other NT (neurologically typical) child was.  How their plans of an empty nest and retirement were out the window because their son would always be with them.

And, I was scared.

And so began the endless evaluations and screenings.  First, at a different hearing screening center.  Then, with the private speech and OT therapists, followed up by once a week therapy sessions for each.  Then, a battery of screenings with WCPSS.  In total, Z had 1 additional hearing screening, was evaluated at school 4 times by Project and WCPSS, 2 times at the private therapy group, 1 time at home by WCPSS, 1 time at Project, 2 times at WCPSS and 1 time at TEACCH.  (That’s 8 days/half days out of the office.  Not to mention the additional meetings held with Project and WCPSS without Z.)  They just weren’t sure.  The running theme was that he was complicated.  Which, looking back, is actually a good thing.  It means he’s not slam dunk, on the spectrum.  That his strengths are very strong and his challenges are mild in comparison to other kids on the spectrum.  But, oh my god, was it frustrating.  I even had one phone conversation with the WCPSS therapist who told me, “I’m looking over all his evaluations and screenings and….I just don’t see it.  I don’t see autism.”  So, back to more screenings.  More testing.  More evaluations.  Until they finally tested him with the ADOS and came to their conclusion.

Meanwhile, J’s job has picked up.  S is doing better in school.  We’ve decided I’d be the one to take Z to the screenings and evaluations.  Partly because I wanted to.  Partly because having one consistent presence at all these things made a lot of sense.  And partly because for a variety of reasons my job didn’t look like it was going to last and J needed to focus on his.  And our household was reaching its breaking point.

 

Next up: The Light At The End Of The Tunnel (Part 3 of our journey with Asperger’s)

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10 Responses to “Hurry Up and Wait (part 2 of our journey with Asperger’s)”

  1. moya said

    Wow! that quote spoke to me. That is excatly how I felt when we got a dignosis when our son was 11!!

  2. I can’t even imagine having to go through something like that. Hang in there!

  3. beccareed said

    I am sorry to hear about all the difficulties you have been having with Z. My thoughts are certainly with you and your family!

  4. clare said

    “at this friend’s house when I had to hover over Z to make sure he didn’t climb, kick, break, eat, run away, etc etc.”

    this quote really hit home with me. most other parents think i am a crazed, over protective mother, but i just don’t know what my daughter might do or try. i am nervous to leave her for very long, out of my sight

    i didn’t realize that the way i hovered and did things for her, wasn’t the norm.

    my daughter finished the same screening process with WCPSS and doctor flagler in May. she was also diagnosed with autism. the process wasn’t quite so long for us. i wasn’t sure why we were filling out all the questions and doing all the testing until everything was done and explained to me.

    i always knew she was different but it was still hard to hear “autism”. she is high functioning though and we have tried some knew techniques at home to help her do daily activities and she is doing well.

    • mbamommy said

      Thanks for sharing. Yeah, I still get nervous with Z. I never know when he’s going to bolt or break something or do something dangerous. Things have gotten better but I’m still nervous all the time.

  5. elizabeth baby said

    Dear Rebecca and Jim,

    Our hearts and prayers go out to you. May God give you hope and strength to take you through this very difficult time.

    Much love,

    Betty and Hank Baby

  6. wow. even though we’ve talked about this – I am still trying to process everything you are going through. I’m going to read the Out of Sync child as I have some fears and unknowns of my own, but either way, I hope to be able to understand more of what you guys are experiencing and remind you that we’re always here for you. I’m so glad you are attentive and pushing this process forward. I hope it becomes second nature to you and Z, and that you can enjoy many of the wonderful moments. They grow up so fast!

    Love you!

  7. […] show you Z’s reaction because we didn’t even get this far with him.  I mentioned here that we tried to force him into his costume: a flight suit custom made for him as a present from […]

  8. […] The busiest day of the year was July 23rd with 109 views. The most popular post that day was Hurry Up and Wait (part 2 of our journey with Asperger’s). […]

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