Sunday, July 30, 2017

Where should I move to get the best autism services?

If I had a dollar for every time this question was emailed or tweeted at me, I'd have my Kidd's co pays for speech therapy paid for life.  Heck, probably enough dollars to hire the speech therapist to hang out at my house for the weekend.  (Which I bet she would game for because she knows I have a pool and a bar in my basement.)

It sounds like such a simple question and one that shouldn't be so complicated to answer but like most things with autism, it is!  It should be black and white but it is not. Which is ironic seeing as autism thinking really doesn't do well with shades of gray.

The thing is, there's no magical list one can produce to answer this question.  Now I am sure there is someone right now reading this thinking "No, there totally is this article I found online about what states and school districts are best and which ones are the worst. Let me go link drop it and not read the rest of this piece even though Mama Fry took the time to write.  I have other things to do, like answering Buzzfeed quizzes to find out what shape of pasta I am.".  Link droppers, hear me out.  That's the first part of this.  That article you think sums it all up? There are so many of these articles written at different times and from different sources. It's almost overwhelming the sheer volume of them.

I totally get though why so many people ask this question.  There are multiple reasons why.  Some move because of work and don't want their kid's getting screwed over.  Some do it because they have HAD it with their current school district and figure it has to be better somewhere else.  Here are just a few things to think about before accepting some article you found online as the gospel according to autism school districts.

1) The different types of disabilities.  We all know the cliche. You met one kid with autism means you have met only one kid with autism.  Meaning, my Kiddo is different than your kiddo.  My child's needs can be and often are completely different than any other child's.  Kiddo is no longer in my town's middle school but there are other students there who have disabilities.  That school was unable to meet his needs but clearly they are meeting other students' needs.  At least, I hope they are but I'm thinking their parents would yank them out if they weren't, ya know?  It boils down to my Kiddo is very different than theirs. If that school is working for them, good.  So while I might share our story of how it rolled for us (like a bus over our heads), it's just that. Our experience. It's not the only experience one can have there. Which brings me to my next point...

2) A school district and experience can change drastically in the years your child attends.  As I mentioned above or if you have been following our story for a while now, the transition to middle school was, for lack of better words, a clusterfuck.  Now had you asked me about our school district  prior to that point like when he was in the town's early intervention preschool or his kick ass elementary, I would have been helping you pack to move to my town.  Those two schools were fantastic with the Kiddo and his needs.  Again though, it's just our experience.  There were other families I know that weren't getting what they needed or wanted for their kids.  No place is perfect.  If you asked me now what I thought of my town's middle school and high school program for special needs students, I got a middle finger salute answer for that.  I had no idea it would get that bad once he hit that age.  It was not something we wanted to have happen but at least we were able to find a private placement for him that gives him the supports he needs.  (And more importantly, the school district pays for it.)   Which leads into my next point...

3) Money. It's all well and good if someone declares "So and So district is the best district your kid can go to for school."  Can you afford to live there though?  Will you be able to change jobs and/or careers that easily?  We couldn't.  We're a one income family and my husband is a small business owner with partners. He is also only licensed to do his job in New Jersey.  To up and move to another state wouldn't be a breeze.  Not by a long shot.  I know we aren't the only ones in that kind of situation.  Sure moving to another state might help some problems but it could open up a whole other can of worms Like...

4) Family and friends that support.  We have my family in the local area and my husband's family a little farther away but still close enough that if we needed help, they could pitch in.  My mom has watched Kiddo vacuum her house many a time while I run around doing errands and my brother has had the Kiddo sleep over from time to time so Daddy Fry and I can have a date night here and there.  A pal of mine helped me out last summer watching the Kiddo for an hour because I had an autism speaking gig and my husband had a late night at work.  (Which Kiddo loved cause she cooked SO. MANY. FRIES.) My point is, we have some help when we need it.  I don't know about you but having that around is important.  Support like that can be hard to find and you can't always count on the next school district to solve all your problems because...

5) Good teachers in bad schools vs. Bad teachers in good schools. This applies to just about any student in a school, autistic or not.  There are fabulous teachers out there who empty their wallets and their hearts into a classroom and more often than not they are not in the fancy pants school district.  This is not to say that the teachers in the "better" ones are slackers though and I'm sure there are many a teacher in a "bad" one that's just given up or don't care.  Sometimes it's just the luck of the draw who is teaching your kid. I think it's pretty well established that a majority of the people going into education aren't there for the money. (Mainly because there isn't any.)

Now I know me bringing these things up probably doesn't solve the problem or answer the question on where to go but I bring them up because I think folks often forget them.  My best advice (not that you asked but hey, you're hear reading this anyway) is GOOGLE. Google the area and "autism" and see what comes up.  Hop on Facebook, type that area and autism into the search box and see what groups and pages pops up.  If you have no plans to move and you're staying put, answer questions about your area that people might post.  Don't answer ones were you don't know an area but your cousin's boyfriend's kid lives there and they said... You know what I mean.  Just stick to your turf.  If someone new moves into your hood and they are on #TeamQuirky, get to know them.  Be that "HOLY CRAP. HELP!" support person because you have been there.

Remember, we're #TeamQuirky, we take care of our own. We're kind of like the mafia but without guns and we're sleepy.

Kiddo knows we're not moving out of New Jersey ever.  I'm not leaving a land where I don't have to pump gas in my car.  43 years old. Never done it once. :-) 

Sunday, July 16, 2017

Sometimes I blame autism.

If you have been following us on social media, you know that we just had a whirlwind of pain, agony, dentistry and autism.  It's not a good combo. Kiddo managed to crack his two top front teeth while at school. How? I blame autism. Let me explain.

Upon earning his final token to get a reward he had been working for, one with high value, he got what I like to call "flappy happy". He jumped out of his seat and started bouncing up and down like Tigger from Winnie the Pooh. This is kind of a common thing to see with folks with autism.  When they feel an emotion, they feel it right now to their toes.  Sometimes it's a sign to me that the Kiddo is starting to get a bit overstimulated by a situation but more often than not it's just him expressing how he feels and it's usually when he feels AWESOME!!!

However, what was not awesome is what happened next.  In his flaps and jumps he tripped over an area rug in the room and his face slammed into a locker in the classroom.  BOOM! Top teeth cracked. As horrible as that was, Kiddo was less concerned about his physical well being and more concerned about missing the upcoming "water day" event that was happening at school that day.  Because that's just how his autistic mind works.  He was patched up by the school nurse and given the clearance to go.  They called me at home to tell me what happened and honest to God I wanted to cry. Mostly because he was hurt but I will be selfish but real here. Dental work and the Kiddo?  It's a fecking hot mess.  Just awful. Absolutely awful.

You see, he's done this move once before. While laying on his back in bed he dropped the iPad and it's very heavy case on his face and chipped one of his front teeth.  So this was not our first rodeo with major dental stuff.  In fact, it only happened about a year and some change ago.  So not only did he just knock out ALL the dental work from last time, he cracked another one too to boot!  Skillz!  My Kiddo has 'em!

And while I was on the phone arranging for an emergency appointment to get him seen by his dentist group I was really feeling sorry for myself.  In order to fix this the last time, we had to do sedated dentistry and that took, no lie, FOUR MONTHS to set up.  It is a giant pain in the ass.  One look at my Kiddo  and his new and improved hockey goalie smile he was sporting made me want to just crawl under a rock and hide.   (If you want to read about that adventure, you can check it out here.  "Talk is Cheap"

I kind of figured that was what would have to happen again but there was no way on earth this Kiddo of mine could live like this for a couple of months. It was bad.  Like really bad.  I got the confirmation of this when the dentist called his partner in to consult on what to do with him.  When they have to call for backup, you know it ain't good.  Kiddo managed to crack them both well enough that they HAD to do something for him today. No complaints from me but how the HELL were they going to do in the office?  They're both looking at me like "Well Mom, you know him best.  Think he'd let us get in there if we used some Nitrous Oxide aka Laughing Gas?"

Ummmm, your guess is as good as mine? I really had no idea.  That was never offered to us as an option before.  It was "Your kid cannot do a basic cleaning without four adults holding him down. Sedation.  ALL OF IT." At this point though he is in a crap ton of pain that he's actually admitting to,(He's got a crazy high tolerance for pain. He once dropped a bowling ball on his foot and kept bowling.) his jagged teeth are slicing up his lips and tongue repeatedly, and I'll admit it, it was kind of shocking/icky to look at this busted looking smile.  So we had to at least try.

This is when this dental group really rocked.  Though they typically close early on Fridays in the summer, they stayed open late for the Kiddo. This is the power of the Kiddo. He can frequently charm folks into doing stuff like this. Or maybe they just felt really bad for us. I'm not sure but I'm just glad they did. I just had to keep him entertained for the next three hours, we could come back when they were closed and they would attempt it. We had nothing to lose.  So I juggled because what else could I do at this point?   It gave me time to try and explain what was about to happen to him.  Oh and I got the EXTRA fun of not letting him eat for the next couple hours because of the work they were about to do.

Kiddo was pretty anxious before they started but there was something about the situation where he actually seemed to understand that this was a thing that they had to do. He got in the chair and allowed the dentist to put the Laughing Gas mask on him and HOLY COW, now I know what my Kiddo would look like if he was stoned.  If there was any silver lining in this, it was the entertainment of this Kiddo on Laughing Gas.  He could not stop giggling and singing the whole entire time. Including the time she had to take the big needle of Novocaine which made me feel woozy just looking at her do it.  I thought this would be the moment he would lose his collective shit.  Nope, just went along with it. I WAS IN SHOCK!

This is when the dentist said "Okay, this is what we're gonna do." and she rattled off a very basic check list for him about what work was going to be done so he could "check it off".  I loved her for that.  She kept the X-ray bib on him to act as a weighted blanket. I gave him one of his favorite fidgets to hold and we just went for it.

Now it wasn't perfect. He had moments here and there of trying to grab her hand but I was able to take his hand and hold it down without much of a fuss on his part. His aim was pretty punch drunk so he really couldn't grab her.  We did LOTS of singing and at one point three grown women were serenading the Kiddo the best of Thomas the Tank Engine songs.  There was a point towards the end where I almost started crying because I couldn't believe that we were actually almost done and that he had done it without needing full sedation.  I was so stinking proud of him.  I was practically beaming. I couldn't wait to tell all of you Fries because I knew you were going to get why this was such a huge deal.

Then we were done. I don't know how on earth we pulled it off but we did. From two cracked teeth to two brand new perfectly formed ones.  I could tell even Kiddo was pretty damn proud of himself.  Not gonna lie, I was also beyond grateful in my wallet as doing it without sedation was so much cheaper.

It was only later at night when I started feeling very guilty that I had just spent the past twenty four hours blaming autism.  I started thinking how it was the flapping from being overstimulated part of autism that caused him to get hurt in the first place.  It was the sensory issues from autism that made getting even a simple teeth cleaning an ordeal.  I spent hours through all of this being pissed off that a behavior through autism had hurt him and it was autism again that would make treating the injury even more difficult. I blamed the communication issues that come with it because I was convinced he wouldn't understand what needed to be done and he wouldn't really be able to tell us what was scary to him.

Sometimes I blame autism and then I blame myself for placing blame on a part of my son that he has no control or say about. I might as well place the blame on his left elbow or the freckles on his nose.  Autism is just part of the package.  You would think I'd be used to this stuff by now.  Maybe I should have asked for a hit of that Laughing Gas. ;-)

Kiddo celebrated being a brave boy in a #TeamQuirky way. Tackling dental drama and getting my stairs cleaned? Is this Heaven? I think it is!