Emotions when your child with special needs goes to school

When LJ was a baby (he STILL is my baby) it was easy to overlook his special needs.  It was hard to tell how much his hypoxic-ischemic encephalopathy (brain damage) would affect  him. 

Even as he got older, since he was our first, it wasn’t difficult for us to turn a blind eye.  We simply avoided others with children similar to his age.  I stopped reading baby milestone books and removed myself from milestone websites.  I created a faux shelter for us.

Today, I dropped off some things at LJ’s school and sat in for an hour, just to observe.  I had to leave as I realized I was getting upset.  Don’t get me wrong, he’s in great hands.  I am confident, despite my pushy-mom attitude, in the teacher, paras, and therapists.

As I choked back tears on the drive home, I tried to figure out why I was so upset.  I went home and had a good cry, but I still couldn’t quite articulate why I was crying.

And then it hit me.  This was a scene I have been avoiding LJ’s entire life.  In the beginning, I had an excuse because he didn’t like crowd.  But now that he doesn’t mind so much, I realize it’s just me. 

I don’t mind that he’s different.  I was never part of the “in” crowd.   But I know how hard life is going to be for him.  I know he is going to have to struggle everyday.  I worry that he won’t have any friends (although he does have one in his class).  I worry that I’m not pushing him hard enough.  That maybe, if we do that hardest work now, it will be easier later. 

Today, during story time, they brought LJ to the circle in his stander.  He was a part of the group.  Yet, a part of me was thinking, why?  He has no interest in stories.  Couldn’t they be working on something more relevant to him at the same time?  But then I thought, well, I really like how they’re including him.  I was torn.

I’m really glad I don’t have to make those decisions every day.

It comforts me to know that the staff loves him.  That they see him and not just his disabilities.  That he has a cute little friend in a walker that adores him. 

But it really sunk in today.  I’ve known for a long time now that I would have to fight for LJ to have the best.  I would have to put a lot of work into finding out what works for him and to make sure he is getting the care he deserves (I’m not just talking school here).  I’ve known, watching him in therapy, with the other kids around, that life for him would be a struggle.  That life in general wouldn’t be easy.

Seeing it, though, made it hit home with me.  Seeing him, alongside his “typical” peers, really showed how different he is. 

It’s not that I feel sorry for him.  It’s not that I hate his disabilities or wish he was “normal”.  It just hurts.  It hurts to know that nothing will be easy for him.  It hurts to know that he’ll probably be excluded from many things because he just won’t be able to do it.  But it really, really hurts to know that one day, he might understand that he doesn’t get to do certain things because his body won’t let him.  Or that he might be excluded because he’s different.

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IEP

It’s that time of year, for parents of children with special needs.  To sit down with therapists and teachers and make a plan.  For their little man.  Or little wo-man.

Ok, I’ll stop while I’m ahead.

For those of you who are not familiar with this plan, otherwise known as an IEP (Individualized Education Plans), I’ll give you a brief description.  Basically, this is where we state our goals for the school year.  It really varies from district to district, school to school, heck teacher to therapist, on how specific you get.  I know of a lot of parents that have to be VERY specific and detailed about their childs needs and how they’d like them to be addressed. 

Despite the fact that we chose this not so glamorous, pigeon infested apartment, to be in a great school district, I was still nervous.  I like his teacher, I like the team of therapists… but I like my son more.  It went pretty well, though.

He’ll be going to school, 4 times a week for 3.5 hours in the morning, with Fridays off.  All of his therapist travel so one therapist will be there once a day and will work with him for 30 minutes.  They will also teach the paras how to work with him.

The part I didn’t like is the 30 minute “sessions”.  It takes almost that much time to get him to really get into something.  They assured me that they would work with him more if needed, and that they’d be at the school all day for the teacher/paras to ask questions.  I guess this won’t really be traditional therapy anyway, so I didn’t fight that one.

They did express an interest if talking to our therapists at the Rehabilitation Institute.  And they’ve talked to our vision teacher now.  But they did admit that they don’t know LJ yet… that they will adjust their activities and therapies accordingly.

I can tell they all adored him, though.  Which is kind of how I know he’ll be in good hands.  He won’t be shoved away in a corner somewhere, not involved with the other kid (he’ll be in a classroom with half “typical” kids as peer models). 

Now I just have to get over the terror that comes from thinking of my little baby going to school on a BUS.  AT 2 3 YEARS OLD.  (They did assign him an aide for the bus, which makes me feel a little better).

 Fawk.

Quick updates

There’s been a lot going on so I’ll just give you the run down…

  • LJ’s first IEP (Individualized Education Plan) meeting is tomorrow.  We had our first meeting and evaluation a few months ago after looking at two different schools (our zoned school doesn’t have a Pre K).  I really like his teacher and there were so many professionals there (think therapists) that I really don’t remember many of them.  A little nervous about tomorrow, because we’re really not prepared.  We just got a rough draft of the IEP moments ago.
  • They (the district?) decided we could continue services through Infant Toddler for the remainder of the summer.  They will be the ones that create the goals, though, since they’re paying for it.  Also, how often we receive services will be up to them.  We should find out this tomorrow, but either way I feel pretty fortunate because we’re one of the few families they’re doing that for.
  • LJ’s having a PH Study on Saturday (24 hour reflux test). Long story short: we were referred by the nutritionist at Children’s Hospital to SURGERY clinic for consult on a G-tube (feeding tube) and fundoplication (fundo- basically to stop reflex). He then asked why we hadn’t been referred to a GI doc firt.  That’s what we were wondering so he ordered an upper GI (results were normal) the PH Study so we’d have something when we have our first GI appt in a few weeks.
  • We have our first dermatology appointment for LJ’s “rash” next Wednesday.  I doubt it’s that, but after I showed our Rehabilitation Doctor the pics, she referred us.  Basically, his hands or feet, or even ear, turn really red, for no apparent reason, and gets really hot for about 5 minutes.  It could just be one hand/foot, or both, but so far no one seems to know what it is.
  • We will be switching LJ’s formula from Pediasure to Peptamen Junior 1.5, which is higher in calories.  We’re still considering the g-tube, however.
  • Insurance finally approved Speech at the Rehab Institute but now they want us to come an extra day!  That would be 3 days a weeks we’d have to trek downtown. 
  • Noah took his first birthday was this month.  I’ll be posting about that real soon with lots of pictures.  It was adorable.
  • He also took his first steps last Tuesday!!! 
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