MBA Mommy

Part MBA, Part MRS, Part MOM…..All ME

The Light at the End of the Tunnel (part 3 of our journey with Asperger’s)

Posted by mbamommy on August 10, 2010

Note: this is part 3 of a 3 part post.  Part 1 is here.  Part 2 is here.

I find it interesting to hear/read everyone’s reactions to these blog posts.  Some are supportive, some are surprised, some are at a loss for words, some are empathetic, some are sympathetic, some are angry at my openness and honesty and some are downright concerned for me/us.  Looking back at the previous posts, yes, there’s a bit of doom and gloom going on.  And, that’s accurate, it was tough.  WAS being the operative word.  I would have never begun writing this story if there wasn’t some sort of resolution.  Frankly, I couldn’t have.  There’s no way I’d have the guts to come right out and talk about all of this as we were going through it because I didn’t even know what IT was!  Same thing happened when I was up to my eyeballs in postpartum depression after S.  I couldn’t talk about it then, even when my friends and family were trying to get me help.  It wasn’t until I was out of the quagmire that I could look back and say, “Wow, that sucked!”.

But, here’s the good part.  There is a light at the end of this tunnel.  I’m not saying that everything’s fixed….far from it.  But, we (myself, J, Z, & S) are in a much better place now than we were at the close of the last installment.  And, that’s allowing me to write.  To put to paper (internet?) what we’d been through and what we’re planning on doing.  To get everything swirling around in my brain organized and out.  Ever read Harry Potter?  Remember Dumbledore’s Pensieve?  I view this similarly.

So….where was I?  Oh right, we were wrapping up all our screenings and evaluations (still not sure what the difference is between those, but whatever).

At this point, I’d gone part time at my job.  To be honest, it sucked.  Not because they or I did anything negative but because I really liked what I was doing.  I liked my team, the challenges, the intellectual curiosity, the energy…everything.  Especially the cute shoes.  If you ever need fashion advice, go to the ladies at BBI….they totally shamed me into updating my wardrobe (and shoes!) and I’ll forever be thankful they did.

But, I digress.  The decision to go part time was a joint decision between myself and my boss.  Once he settled into his job (he was hired a few months after me) we began to realize there was a ton of overlap in our responsibilities.  When I had started out, the thought was that there would be a need for a Director role managing the teams and a VP role managing the biz dev.  There wasn’t and he and I both knew it.  Plus, there was the whole Z thing which completely distracted me from performing my best at my job and took the passion out of me.  Even when I was there, I wasn’t really there.  So, instead of waiting for them to let me go, I proactively went to him and we decided on a transition plan.  I went part-time for 6 weeks to finish up some projects and then I was done.  Again, it wasn’t ideal….none of this was for me…but it was the right thing to do.

Soon after I left BBI, we went to Florida for my Mom’s bday.  It was a blast.  The kids had a wonderful time playing on the beach and in the sun and we were lucky enough to be on vacation when the newest member of our family, a baby girl cousin for the kiddos, was born.  It was SO great to be on a relaxing vacation.  J and I kept commenting on how much we all needed it.

When we came home, we had our ADOS screening with WCPSS. The psychologist called me later that afternoon to tell me the results.  The ADOS scores on two fronts: communication (pragmatic) and reciprocal social interaction.  The cutoff for communication is 5, Z scored 5.  The cutoff for reciprocal social interaction is 6, Z scored 8.  In order to receive a diagnosis of Autism Spectrum Disorder, the aggregate score needs to be above a score of 12.  Z had an aggregate score of 13.

We received the written report prior to the meeting.  It was 21 pages long, with all of the screening results compiled into one document.  J was at a conference in NYC and he missed a session so he could read the whole thing….on his Blackberry!  Poor guy.

Next step was to have an IEP meting with WCPSS (Individual Educational Program = special ed).  I won’t bore you with ALL the details of that 4+ hr meeting.  We discussed his strengths.  He’s extremely intelligent.  He scored above average or advanced on all cognitive rating scales.  His motor skills were great.  His communication was very good…except for the pragmatic kind (the give and take in conversations).  We discussed his challenges.  He’s not truly social.  He wants to be but doesn’t know how to be.  And, if he does play with another kid, he has to control everything or he loses it or walks away.  He has intermittent eye contact.  He takes inappropriate risks.  He has his own agenda and has a tough time doing things if he doesn’t want to.  He has difficulty following instructions….unless it’s something he wants to do.  He has difficulty with transitions….unless it’s something he wants to do.

The bottom line was Z exhibited “behaviors consistent with the diagnosis of high functioning autism” and qualified for a half day Developmental Delay IEP with related services of 30 minutes of speech therapy once a month.  Right….what the heck does that mean?  Well, the county saw that there was enough of a concern in his behavior that they wanted to put him in a special ed class with other kids that had some sort of developmental delay.  Chances were, all the kids would be like Z…high functioning but not quite ready for mainstream.  So, Z was assigned to a public elementary school in the area for classes Mon-Thu for 2 hrs and 45 minutes.  The teacher would be responsible for meeting the goals listed in the IEP.

And that’s when the real work began.  Now that we had the diagnosis, we wanted to know what else was out there.  What other private services/schools/options did we have?  Was his school assignment and teacher assignment the right one?  Did we want to accept what the public school system had offered us?  We thought so….but…we also had the idea that ideally we’d find a full day program for Z because we knew he could handle it and we thought the more we can throw at him the better.  Or, if we couldn’t find a full day program, maybe we’d do the IEP assignment in the morning and then a different school in the afternoon.  And, did we want him to be in a class with all kids with developmental delays?  Wouldn’t it challenge him more and help him more if there were some kids that were typically developing?  We were afraid he’d bring home some really bad habits (yes, I know that the only way to avoid peer influence is to put him in a bubble and no, I’m not planning on doing that).

I started doing research on area preschools that had a lean towards kids with developmental delays.  First stop was the Mariposa School in Cary, NC.  The drive was easily 45 minutes, but who cared, right?  If this was the right place for Z, I’d do it.  Let me say that for the kids the Mariposa School caters to, it’s a fabulous facility.  It was also for much lower functioning kids.  Quite frankly, it terrified me and I couldn’t wait to get out of there.  I called J practically in tears and said, “How can they say Z’s got the same thing these kids do?!”  As I mentioned before, it’s a good thing Z’s so complex….he’s not slam dunk autism.  He’s extremely high functioning.  And extremely intelligent.  Both of which are strengths that can easily be built upon in the right setting.

My next stop was the Madamin School.  And, I fell in love.  It was a full day inclusion school.  The staff was amazing.  The kids looked like they were having a great time.  Exactly what I wanted.  And they even had a classroom for younger kids….so maybe S & Z could go to school together?  Who cares that it’s 45 minutes away without traffic.  But….I wasn’t the only one who loved the school….I couldn’t get him/them in.

After that, there were countless emails/phone calls/internet searches learning about other school options in the area.  None of them *quite* right.  I finally called WCPSS and told them my ‘ideal’ situation and was there anything that resembled what I wanted available?  Well, there just so happened to be a new joint program with WCPSS, Learning Together and Head Start.  They were going to create full day classes with a mix of kids with delays and without.  AND, the IEP would still be in affect….was I interested in going down for a tour?  Was I?!?

It wasn’t until J and I toured the facility that we realized that while on paper the program was perfect, there were a few hurdles we just couldn’t overcome.  First of all, the school was in the middle of the ‘hood.  And, I’m not talking the ‘burbs.  Apparently, there’s never been any problems inside the school, but they occasionally have to go on lock down because of a situation in the neighborhood.  Call me snobby, but I just couldn’t see my son there.  So, then there was an option of a different campus.  Which got rid of that big hurdle.  But, we realized that the typical kids were coming from Head Start.  And, while for the kids that Head Start caters to, it’s a fabulous program, we just didn’t think it was right for Z.  Again, we were concerned with bad habits and difficult  behaviors coming from that environment.  I’m sorry if that sounds bad….but I am white, middle class and I live in the ‘burbs.  I went to private school growing up.  Yes, I’m sheltered.  And, yes, I plan to do the same for my kids.  Sue me.

Then, Z’s speech therapist informed me that there was a social skills group being offered through First Journeys at a preschool called Bridges & Beyond in Wake Forest.  We decided that because Z is fine when communicating with an adult one on one, he’d be better off in a small group setting with therapists trained at helping the pragmatic communication/reciprocal social interaction.  What a great situation!  Z enjoyed it, it was an easy drive.  And, they offered a half day inclusive preschool.  SO…we planned for Z to go there 5 days a week starting in September.  S will join him 2 days a week.  We’ll also be working with one of the therapists there on a one to one basis a couple times a week to help me and help Z with some of his behavioral challenges.  And he’ll continue working with his OT.

All set, right?!?


5 Responses to “The Light at the End of the Tunnel (part 3 of our journey with Asperger’s)”

  1. Erica said

    sounds like truly good news! Ur doing all the right things…being an amazing parent! Keep on keepin’ on my friend; much love to you and ur beautiful family.

  2. […] Please join me on this new road.  I’m looking for support and advice and a way to give back to those who have done so for me.  You can read the whole diagnosis story if you’re so inclined.  Start here.  Then go here.  And finally here. […]

  3. […] Note: this is the first of 3 posts I plan to do that describes the past 8-9 month journey of getting Z diagnosed with Asperger’s.  My goal is that by putting my story out there, it may be of some help to someone else in a similar situation.  Going through the diagnosis process was probably the hardest, most emotionally draining thing I’ve ever been through.  It’s scary, overwhelming and all encompassing.  But, it doesn’t have to be because no one is alone out there.  Part 2 is here.  Part 3 is here. […]

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

  5. […] the story of Z’s diagnosis (haven’t read that yet? Here’s part 1, part 2 and part 3). But, I’m excited to get further into what it’s like living with autism. At least from […]

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: