Not For The Faint Of Heart...

This morning was Gavin's first, official IEP with the school district.  Even though I had zero intention of sending him to Kindergarten, I still went through with it.  Why?  Well, I was advised to.  And - even though part of me felt it didn't seem to make sense "going through the IEP motions" when I knew we weren't sending him to Kindergarten, I saw several "pros" to the situation.  One - I could actually see what an official IEP was like.  Two - Goals could be written for Gavin that we could work on accomplishing between now and the day that he actually DOES start Kindergarten.  And three - I was dying to know what school or schools the school district was going to recommend for him.  Going through this IEP was the only way to get those recommendations.

So I went.  And I came home feeling VERY bad about myself.  This morning, my world shifted on its axis.

When I walked into the room for the meeting, I saw a team of people there and felt myself having to swallow a large, overwhelming emotion.  All of a sudden I realized the enormity of this.  All of these people were taking time to sit and talk about my son!  It moved me.  Some of them I recognized because they had come to the house to evaluate Gavin, but most were strangers...including the Principal of the school.  As I made my way to the empty folding chair I spotted - two people simultaneously asked, "Is your husband with you?"

Uh..... no?  

I instantly felt shame.  Was he supposed to be here?  Do most husbands come to these?  I didn't even really fill Ed in on the details of the date and time and, to be honest, I'm not even sure he would know what an IEP is.  At this point in Gavin's life, I handle all the therapy and school stuff.  While that may change in the future and Ed will surely and happily be more involved - it hasn't seemed necessary for us.  But instantly I felt like I was getting this off on the wrong foot.  The folding chair next to me remained empty for the entire meeting.

The woman moderating the meeting asked if I had any questions about the evaluations before they got started.  And she motioned to the psychologist who strangely said to me, "I sent you an email, but I didn't get any response from you."  She stared at me quietly waiting for a response.  I came up with the brilliant, 

"You did?"

I felt my cheeks get hot.  What the hell?  Second strike against the unprepared Mom!!  What was this email?  Was it a question I was supposed to respond to?  She never elaborated so I spent many moments during the IEP wondering and worrying that I forgot to respond to an important email.  Then I got annoyed - she's the professional!  If I didn't respond to an email, couldn't she have followed up with a call?  Another email?  A letter?  A smoke signal?

(I got more annoyed when I came home and searched her name in my emails.  When I found it and re-read it I remembered getting it and thinking that it didn't need a response.  She was thanking me for having her into our home to evaluate Gavin and said if I had any questions to feel free to contact her.  I didn't have questions - so I didn't contact her!  There was no reason for the awkward encounter this morning.  So frustrating.)

As the meeting went on and we read through each section, the moderator would stop and ask me if I had any questions or had anything to add.  

"Nope!" was my anxiety ridden, thoughtful response.

Inside I was thinking...what can I say?  Most of the report was accurate.  Although I know - and you know from reading - that Gavin has made GREAT strides and is a true Superhero in our eyes, the truth remains that he is extremely delayed.  He scored "low" or "less than low" in every area:  communication, gross motor, fine motor, safety awareness, social, developmental, you name it.  It's something I choose not to focus on that much.  And quite honestly, when you live with him and know how far he's come - it's easy to forget a lot of that crap.  Honestly.  But even these evaluators who met him briefly and came up with pages of written reports and recommendations - they got a lot of it right.  And reading their IEP goals - like getting Gavin to recognize his name or working on independent toileting or using his walker without help - I realized they were all things I agreed with.  And when they told me that Gavin would need to be taken out of class for all of his therapy, but would participate in activities like recess and lunch with his peers...and that they would re-assess as time went by if he could participate in other activities - I thought I should feel outrage!  Anger!  Like he wasn't included!!  But I didn't.  I got it.  If Gavin was getting his therapy in a classroom with other things going on - he wouldn't be able to focus.  But was that the right thing to do?  I started to worry.  I always hear other parents talking about their IEPs - what they had to fight for, stand up for, bring legal representation for, etc.  I started to worry that because this seemed to "easy" - that I must not be doing it right.

There was an administrative supervisor there that mentioned throughout the meeting that she hoped I would consider holding Gavin back.  That they all thought he would benefit from another year in "pre-school" to give him more time to mature and progress.  And she mentioned the new classroom that I referred to the other day that will be right there in the Kindergarten Center.  Each time she brought it up, she turned her head to the side and said with a concerned face, "Gavin would be a 'pioneer' in this brand new classroom" almost like it was a negative.  I already knew that I was holding him back going into this meeting.  And I already knew that it was that pre-school classroom that she referred to that I was looking at.  But when she said that Gavin would be a pioneer - I only saw the positive!  It would be a small classroom for kids with multiple disabilities like Gavin - and they would also bring in some typically developing peers.  Since it is brand new, it would all be tailored to Gavin and the other kids!  I think this is amazing news and when it opens (in August) I am hoping Gavin will be walking in with Miss Sara.

In the end, the only thing I really pushed for was that Gavin be allowed to have an Aide of our choosing (in our case, Sara) to go to school with him...whether it was the pre-school classroom or Kindergarten.  There was no immediate answer - it was something they had to 'look into.'  

And also in the end, when I asked what their Kindergarten recommendations were - it seemed like they only had one in mind.  I was expecting a formal recommendation or two.  It seemed like they wanted to formalize the IEP and then contact schools to see if they would take Gavin.  The only school that they had in mind for him today was a school called "CDC", which stands for the Child and Career Development Center.  I have heard from other parents that this is like a warehouse for kids with pretty severe disabilities and emotional issues.  I have not personally visited this school - but from what I have heard and read, I'm not interested.

I spent some time after the meeting speaking with the supervisor about the pre-school classroom and expressing my interest.  She was very nice and even asked if I had any photos of Gavin so she could put a face with the name.  I made a mental note to ALWAYS bring photos of Gavin to every IEP meeting for the rest of his life.  I felt so grateful to her for asking to see him - and telling me how much she wanted him in the new pre-school classroom.

I walked to my car...got in...closed the door...and sobbed.

What will become of Gavin?  Will he be destined for a life of being shuttled to buildings in the hope that somehow, someone will unlock him?  Will he talk?  And walk?  And go to the bathroom alone?  Will he learn his shapes...and his name...and how to feed himself?  

And then there's me.  Have I held him back?  Was I completely unprepared for his IEP?  I started to think about his day - I don't spend every moment drilling him with educational activities.  Should I?  Would he be doing so much more with a better Mom?  If I were smarter (I mean it) and more disciplined (truth!) I would absolutely home school.  Then I wouldn't have to worry about schools I don't like - or facing the fact that he's so delayed - or sending my defenseless, non verbal, sweet, trusting, beautiful child out into a world filled with sickos.  I pulled into the garage feeling very overwhelmed.

I walked in the house and was greeted by Brian and Miss Sara.  I spotted Gavin in the den and made my way over to him.  I knelt down and he stared into my eyes.  Gavin doesn't make a lot of eye contact usually.  But today, he intently stared at me with eyes that looked almost desperate.  What was he trying to tell me?  I came in with my own baggage so I thought for sure he was saying with his eyes, 

"Mommy - why did you go to that meeting so unprepared?  Don't you love me?  Please don't send me to a warehouse."

But I snapped out of it - distracted by his extremely runny nose.  I brought him into the kitchen, gave him some medicine and instantly he started to cry.  And cry.  When we were going on an hour of him crying and me trying everything to figure out what was wrong - I called the doctor.  You must fit him in right away, I told them.  Gavin NEVER cries - and real tears are coming out of his eyes.  There is something wrong...and it can't be that his Mommy didn't respond to an email or that she didn't tell his Daddy that he should go to the IEP or that they recommended placing him in a warehouse, er, I mean school.  

Gavin and I got to the doctor by hour two of him screaming and crying and almost throwing up from the pain.

Double ear infection.  Oh and the rash that developed all over his legs was a viral rash.  It might be itchy, but Gavin wouldn't be able to tell us or even itch it.  I cried for his suffering.

I cried all the way to the pharmacy for his antibiotic.

I cried all the way home as he sat passed out from exhaustion in his carseat.

I sent Miss Sara home early and, with the boys down for naps, I sat and cried some more.  Once I started crying about the IEP...I remembered all the other reasons I needed to cry.

I'm feeling inadequate as the boys' Mom.  Maybe I don't do enough with them.  I have one child with major delays - and one child with speech delays.  Coincidence?  Maybe not.

We're ALL sick - which may explain my mood.  I feel like crap.  And I am so tired of the boys getting sick.

I miss my Dad.  A lot.

I want my daughter back.  In two days, May 10th, it will be the second anniversary of her birth.  Why did that have to happen???  Why does a lot of the shit that has happened to me...to us...have to happen??  What the hell did I do to deserve this???

Today I just feel...overwhelmed.  Very sad.  Depressed.  With all of us sick, Gavin's therapy is canceled and Brian is out of school.  What I really want to do is lock the door - stay in our pajamas all day for the rest of the week and watch a continuous loop of Disney shows.  I want to lay on the couch, hand Brian the iPad to entertain himself and cry all day.  I want to skip over Thursday and not face the fact for one whole day that I missed out on the chance to raise my daughter, Darcy.  I want to spend at least an hour giving God a piece of my mind.  Don't worry - I know my God can take it.

Having a child with disabilities - especially when he's such a mystery - is so difficult.  There's no real road map - and every new person in his life needs directions.  Every day is another chance for me to make a wrong turn and it's so, very stressful.  It really is.  I just hope, in the end, I don't screw up these kids too much.

If you made it to the end, I'm very impressed.  Today's "Mother's Day Project" will be postponed to tomorrow's blog.  I don't want my tribute to my Mom to be overshadowed with all of my bull*&#@ and whining!  Besides, I'm hoping that tomorrow I'll be better.  Or I'll be up to faking it.


p.s.  Today's photos are totally gratuitous, old pictures from a happy time in my life - posted with the self indulgent intention of cheering me up.