Thursday, 6 November 2014

Why Moms Cry At IEP Meetings

I am going to try to approach this as delicately as I can.  Whatever never mind.  So today was Nate’s IEP meeting.  You know, the one before the BIG one in March (kindergarten placement)  Tensions are high- well for me anyway.  I cried at least 3 times during today’s meeting.  I cried in the parking lot before and after.  I cried this afternoon.  And once again, nothing has changed- I mean he’s continuing to very slowly progress.  He’s showing some “positive signs” of progress.  Blah, blah, blah.   We are moving “away from academics”, to the more practical, social and communication skills- which is what he needs, but it’s sad, and it’s hard.  His goals these days sound very similar to his goals when he was 2- he does a better job of actually achieving them, but it’s still just tough to swallow.   I was speaking with his teacher, who I adore, at the entrance of the school after the meeting for a while and started crying AGAIN.  And she asked “why the tears? He is doing great!”  But I just couldn’t get on board today.  So I just said, I just love him so much, and I’m scared.  She said she loves him too.  And I know that she does.  But in that moment I just wanted to scream, you don’t understand!

It’s much easier to view the little progresses on a day to day basis, and focus on those and not the long term picture when you go home at night.  There, I said it.  We are surrounded by lots of supportive people, who try to empathize with our situation.  But they can’t- not truly.  Because they get to go home.  If someone asks, who is responsible for this child, the answer is me (and my hubby).  At the end of the day, if Nate can’t communicate effectively or function independently, it is my responsibility.  Both John and I have already been mentally preparing ourselves to be lifetime caregivers, to have a trust set up, to have extremely detailed plans in case we both pass away.  Here’s a story to make you cry- one day I was talking to my younger sister about this- she has a new baby, he’s 4 months old.  She said to me “I want them”.  I didn’t ask, didn’t broach the subject, she asked for them.  OK, sorry, that just popped into my head and makes me sob every stinking time I think about it.  What an amazing woman.

Anyway, so while I work my very hardest to focus on the little things- like Nate’s trick or treating success last week, or the fact that he is showing some interest in some toys FINALLY, there are days, like IEP day, when I just can’t do it.  On those days, I find myself thinking about 5 years from now, 10 years from now, and even further into the future.  And I can’t revel in the little things.  Well, I take that back, I can, for a moment, but my focus doesn’t stay there.  I think about the IEP meetings of the past, and the ones to come, the positive changes, and the areas where there is a real lack of progress.  And it scares the crap out of me every single time. 

Add in another IEP, another set of interventions, another set of special educators just casually emailing or sending new suggestions, apps, tools, progress reports, etc, etc, etc, and some days--- well it just flat out sucks.  Today is a sucky day for me emotionally.  And we haven’t even done Jack’s math homework yet J

Do I have some words of wisdom to wrap up my whiny day?  Well kind of.  Grab your other autism families, grab them and hold on- you need them, and they need you.  Appreciate all the love that the family members, teachers and therapists have for your kids, even if it is slightly jaded by the fact that they only deal with behaviors for short periods of time and then they move on with their lives.  You need them to love your kids, you need them to be able to go home at night and recharge- because then they will continue to fight alongside you for your kiddos.  The trick--- and it is a trick- is to recognize that you will never get to do this yourself.   But that just like them, you too need to find opportunities for respite (although you clearly won’t get them as frequently haha).  This is something my husband and I are working on- dating again, even if it’s dinner in an hour after an appointment, or an autism conference, or finally, finally going away for fun for the first time since we became parents for our 10 year anniversary.   The burn out rate is high among special educators and therapists.  What does that say for OUR burn out rate??  It says, we damned well better take every single break we can get- that’s what it says.  It's not being selfish, it's refueling.  So we can come back swinging. 

But for tonight- we’re skipping baths, and I am writing Jack’s math answers instead of making him practice his fine motor skills.  And somewhere tomorrow, his teacher will see this and maybe think that I was being lazy.  Nope, not lazy- just prioritizing my sanity today, that’s all.

Monday, 3 November 2014

A Gift

I am not someone who believes that my children are just “differently abled”.  Maybe someday, if they reach a point where I don’t watch them continuously struggle to live in this world of ours, I will have a different perspective, but right now, for the most part I see confusion, fear, anger and frustration.  And I worry.  And worry.  And worry some more, about their futures.  Every single thing we do, every single day is challenging.  Take getting both boys in the car to take Nate to school in the morning- the minute we turn on the car, Jack starts in with, mom, you will turn the radio off when you take Nate in right?  (he sits in the car for about 2 minutes each morning while I take Nate in- don’t judge, it’s a private safe parking lot).  The one time I forgot to turn the radio off, he rolled down the window and screamed like a maniac until I came out to turn off the radio- he even liked the song, it was just the concept that the next song might bother him.  If there is traffic, he screams and says he wants me to drive through the cars.  If I turn to go a different way to avoid traffic, Nate screams because I have deviated from the routine.  So I am saying, little things in life are a big deal for us- if Jack could finally master buckling his seatbelt I might bust out into a chorus of Hallelujah!  No, seriously.

So when we face a week like last week- school parties, social events, trick or treating… can look pretty overwhelming to say the least.  Jack is somewhat used to the routine these days- he had his issues with anxiety- he cried if I moved more than a step away from him at the Cisco Center party because he was afraid I was going to leave him there (since he stays there sometimes), he yelled an awful lot during trick or treating (inappropriate yelling- like I don’t want that candy, give me two, or if they’re not home I’ll shoot).  But he made it- we went with a largish group of friends and family and he did a pretty good job for him.
Halloween with Nathan in the past has been hellish.  His first Halloween was fine (other than another upper respiratory infection and a considerable number of nebs that day).  

The next year was just….awful.  I remember my mother in law turning to me at one point and asking, is he ever happy?  That is kind of seared into my memory mainly because it was one of the first times I realized how miserable he was- but only when we took him out of his usual environment.  He cried the entire time, and one of us had to bring him home after a few houses.  He had always been my "laid back, easy going" kiddo.  This happened right after his initial diagnosis- it was a whole new ballgame.

The next year I didn’t even attempt a costume- I got him an “owl” winter hat and bought a cape on etsy, the least invasive thing I could think of.  You can see, this wasn’t a big hit either.  Not sure how far he made it that year- kinda blocked that one out.

Last year, what can I say?  The boy LOVED his costume.  Did he trick or treat?  No.  But he DID sit in his stroller and tolerate the other kids trick or treating.  The year before, every time the stroller stopped he went into a meltdown.  Last year, he pretty much hung out.  He definitely had no concept of what we were doing, but he was ok with it.

This year was amazing!  Nathan was an active participant in all things Halloween.  It was like a two week extravaganza of tangible progress.  Holidays often make progress seem more obvious, since it is easier to recall what Nate was doing on that exact date last year, more so than just any other day. 

He picked a pumpkin at the pumpkin patch, he petted the animals at the petting zoo.  When I showed up at his school (I planned his school party) he was nothing but happy to see me- content to stay and participate in class, no meltdowns.  Halloween was definitely the highlight though.  After school, we first went to trunk-or treat at Cisco Center, which if you have never seen it- cars line up with their trunks facing the same way, they decorate their trunks and hand out treats to the kids as they walk from car to car.  Nate was stopping with Jack at each car- next I looked and he was choosing an item independently.   I found something with Mickey Mouse on it, and he was super happy.  He finished that, participated in the party inside (actually did better than his big brother), and then we went home to get ready for trick or treating.  I brought the stroller- I had no idea what to expect from him this year, but if I have learned one thing in the past 4 years, it’s that it is much better to prepare for the meltdown and have a way to “contain” him, than to wing it and hope for the best.  Kind of like taking an umbrella on a cloudy day.  And he did use the stroller once he was tired.  But first he trick or treated with the other kids for a solid hour.  Now, either mommy or daddy held his hand, and walked to the door with him, and he didn’t say trick or treat (although I SWEAR he tried a few times), but he did stop at each door, he did physically reach and pick a treat each time, and he did put it in his bag.  And he would say bye bye (when I told him to).  And me? I spent the entire evening in tears, and probably annoying the crap out of all of our neighbors, friends, and Nate’s grandparents .  “Did you see that??  He did it again!  I can’t believe it!”.  I almost can’t stand it it makes me so happy.  He was calm, he was engaged, and he was interested in what was going on.  This is not a small thing- this is a huge thing.  It was amazing, and one of the best days I can remember in a long time. 

So while I can’t say at this point in my boys’ lives that I consider autism “a gift”, as some other parents express, I can say that Friday WAS a gift, and it was one that I wouldn’t have appreciated nearly as much if autism was not a part of our lives