Friday, July 10, 2015

"Can we get some good news? We could really use some good news this summer..."

So let me say straight out that I'm not writing this post looking for any advice. 

I'm just writing to vent a bit and tell you guys a bit about how our summers going so far.  And I know that there's some people going through a lot worse things with their special needs kids right now, or in their lives right now.

None of this stuff I'm about to tell you about is life or death...but that being said, we could really use some good news this summer.

Ok, here goes

So I wrote back in June about a rough IEP meeting that we had that you can read about HERE

At that meeting we found out that our 12 year old son Kyle would not be continuing at the same school in September and would be moving up to the equivalent of middle school. 

We were under the impression prior to that meeting that he would at least stay at his original school over the summer for his summer school / extended school year (ESY) but because there was not a full-time nurse on staff at that one school over the summer (and he needs a full time nurse due to his epilepsy) they wanted to shift him to the new school for the summer, but in a multi disabled classroom for the summer. 

We have nothing against putting Kyle in a multi disabled classroom.  In fact there's times that we've joked about how we'd love to put him in a class with some kids with downs syndrome because they are usually so social and wont take no for an answer.  Kyle's has had some real fun times with down syndrome kids over the years who would lead him around at the playground.

We just weren't crazy about the school that they were going to send him to in September and so we used that as an opportunity to look at other programs around our area. 

We toured one school a few weeks back that we really really liked. It's actually a school for students who live at their residence. However they have a few slots available for "day students". 

We toured the program and at the tour we immediately felt at home when we heard lots of noise and commotion coming out of several of the classrooms.

Here is the school that finally our kid wouldn't be the problem child :-). 

At the school tour i turned to my wife and said, "seeing a school like this would've freaked us out years back but now this is the place for our guy...i feel at home here"

It just seems like a great school.  They've got several nurses on staff, and they are not going to call us for every seizure or every bad behavior.  These guys seem like they can work thru anything!

So we love the school and definitely want to send him there. They told us placement for September looks very good...summer maybe. 

Our school district seems ok with Kyle going there as well...

However, the decision as to whether Kyle can go to that school has to be decided by some New York State Board. This has something to do with whether they will open up an additional slot for a day student or whether that slot should be held for student who's going to live at the residence. 

So we are stuck in a holding pattern. 

And because of that holding pattern we made the tough decision to not send Kyle to school over the summer.  Kyle normally has a six week full school day extended school year.  

We just didn't want to send him to one new school over the summer, and another school when (knock on wood) we get into this great school.  Two new school adjustments in the matter of 3 months just seemed too hard/mean.

So for summer, Wifey put him in a great local special-needs day camp two days a week (that we are paying for) and he is home with her the other three days. 

And it's been a bit rough.   Rough on her, and rough on him...  Not horrible, but just an adjustment for the both of them...

And he's been having a lot more seizures lately... and so we had to schedule a neurologist appointment for this week, but more on that later...

And then earlier this week another school who had gotten Kyle's packet from our school district called to say "do you want to come and have a tour?" 

Since were in this holding pattern we said "why not". 

So yesterday I took the morning off of work and accompanied wifey and the king to the school tour and the neurologist appointment. 

And of course he had one small seizure in the car on the way to the school tour and two small seizures during the school tour and was trying to find a place to lie down and nap throughout the entire tour...  :-( 

And the school we like a lot, but not nearly as much as the school that we are waiting on. 

However this school from yesterday has an immediate placement for Kyle so we're considering it his "safety school". 

Unfortunately it's a 30 mile/40 minute drive away.  And as I've written before wifey has always driven Kyle to school and has never put him on the bus, a choice that we made for various reasons that you can read about here

However I told wifey "but you can't put 120 miles on the car each day so if we send Kyle to this school we are going to have to put him on the bus". 

So now we really want to get into that other school that we really like.   Did I mention that it's so close to home, like a 9 mile/ 12 minute drive away...

And now on to the seizures...

And the second part of our summer so far has been the increase in seizure activity and increase in naps. 

A while back I wrote a post called "This Is What Epilepsy Looks Like... Not Scary, More Sad" where I described what Kyle's life is like when his seizures are at their worst.  And basically things are now back to what they were like when I wrote this post

Quite a few small seizures each day = quite a few naps each day and in a way the naps really affect his quality-of-life almost more than the seizures do. 

So we had a neurologist appointment yesterday to check in and tell her where things are at. 

I was hoping that Kyle could come off of some of the meds coming out of this appointment since they don't seem to be doing much and see if we can decrease some meds and see where the seizures head.

However at the appointment the doctor said "when did you last have a 24 hour, overnight EEG in the hospital?" She looked it up "last June". 

"Well because of all the seizures he's probably due for another one so you should schedule one in the next couple weeks."

"Based on what we see on the EEG we probably will want to quickly take him off one med and put him on another so you should plan on him being in the hospital for at least three nights so we can tweak the meds quickly under hospital supervision" 

I said to her "is this something that we should expect every year to have to spend at least one night in the hospital for a 24 hour EEG?"

And she said "for a kid like Kyle and the type of epilepsy that he has yeah you should pencil in at least once a year. Always good to get a new look at what's going on up there"

So now we need to find 3 to 4 days in our schedule over the summer to squeeze in an EEG/Hospital visit.  

and then we have to weigh what's more important this EEG or fun summer activities.

For example, we're not going to make it get in the way of our annual upstate New York lake trip in August. That's for damn sure.  We all love that and look forward to that way too much to give that up.

And then we got things on our calendar in July and August that are little things but are still things that wifey and I really look forward to and/or the king really looks forward to.

Like we have the Foo Fighters concert next week, and maybe staying at wifey's brothers house out on Long Island by the beach for a couple of days, wifey's birthday at the end of July and, she's going to see U2 in concert at the end of July  

And then the King has his summer camp on Monday and Wednesdays up until early August. 

So while the seizures are scary and are affecting his quality-of-life we are not going to rush out and get the EEG done tomorrow and miss out on some of the fun stuff that we've been looking forward to and he's been looking forward to, especially since I'm not expecting some miraculous turnaround in the weeks following the EEG...  It'll probably be a slow improvement in seizure activity, if any...

So it was after a morning visiting a school that we like, but probably won't send the king to, and it was after an afternoon of waiting in a waiting room and then seeing a neurologist and finding out we have a 3 night hospital stay coming up...

It was after all of that in the car ride home from the neurologist office that I uttered the words you see in the title

"Can we get some good news? We could really use some good news this summer.  Wouldn't it be great if we heard that he got into that school today?  At least we could take that off our minds and plates"

And I don't want y'all to think that this whole summer has been joyless.  Wifey and I and Kyle try to make the most of our moments.

We went to the beach at the NJ Shore last week for 2 days as a family and had a real nice time.  We have a day trip planned to another beach this Sunday, and we have lots of Kyle friendly activities marked on our calendars this summer.

In their alone time during the week wifey is taking Kyle to the pool, and the beach, and the movies, and the playground, and for ice cream and trying to make their weekdays together when he's not in camp as fun as possible.

And wifey and I always find our fun too.  We're really enjoying "Orange is the New Black".  We have some respite tonight and are going out to dinner and a movie.  We're going to see the FooFighters at Citi Field next week.

Things are pretty normal around our house...

but we could still really use some good news, some good news about his school, some miraculous med that finally stops his seizures...hell I'll even take small seizures that don't make him tired and sleep for hours in the day...

anyway I've rambled enough... time for me o wrap this up so wifey and I can head out to the movies and dinner, and then probably veg on the couch for episode 9 of season 3 of Orange is the new black!

THE END

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9 comments:

  1. Wishing you some good news about his school. I hope you get the one close to home.

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  2. As a one on one in a classroom of severely autistic and nonverbal kids, it warms my heart to see how much you and your wife do for Kyle. He is so loved. I would give anything to have a detailed note from my nonverbal students parents about their child's needs and likes and dislikes and such. With all of the good karma you're putting out there by being such dedicated and incredible parents, I'm sure good things will come your way! I hope for Kyle's seizures to lessen and the school of your choice to contact you with an acceptance. Thank you for your blog posts. They give me so much insight into some of the lives of ASD parents. I know it helps me do my job better. In the meantime of your waiting period, have fun with all of your summer activities! I'm glad you all have them to look forward to.

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  3. See you at the Foo Fighters on Wednesday!

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  4. Hoping for good news! I hate how difficult the NY school placement process is.

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  5. Wishing you guys some freaking fabulous news ASAP!

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  6. Good news. Your options there are much better than ours were regarding school placement. We ended up homeschooling not because we were aiming for super people status, but per force. We had proceeded through every option and rejected one really dubious placement. Then came puberty and seizures and surge of challenging behaviors. So, I left my job and took the home instruction program on and it worked out for us thankfully with a good bit of effort. My child is almost 20 now and the good news is he has mellowed and many behaviors are much better. He had a period of greater seizure activity when he was 18, but it did subside though he is now on a high moderate dose of anticonvulsant plus one other big med. I think day by day and event by event is the best way to go and preserve your sanity. I hope the summer passes ever more smoothly for your wife and that you get the close AND good placement that you want.

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  7. "So while the seizures are scary and are affecting his quality-of-life we are not going to rush out and get the EEG done tomorrow and miss out on some of the fun stuff that we've been looking forward to and he's been looking forward to,"
    Out of everything you've written on this blog, this is the only thing that rubs me the wrong way. You're saying his quality of life is affected but you're not in a rush to do the eeg because you have fun things planned. Then you talk about Kyle "looking forward" to things.You said before your kid doesn't even walk anywhere with a purpose but now you're telling us Kyle is looking forward to various activities this summer? It sounds to me it's more about the stuff you two don't want to miss(and really, you seem to have more outings planned than the parents of typical kids) but whatever that's not the point. What bothers me is that you're trying to sell us that Kyle would be disappointed if one plan(because we're talking about canceling one activity) falls through after 4 years of telling us Kyle doesn't really get these things in advance. Just say it's about not wanting to miss your concerts and date nights and whatever else and be done with it, don't do this. Just my opinion.

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    1. I'm already sorry I posted this, because I think it sounds like I'm saying you're bad or negligent parents and I don't think that.You clearly do a lot for Kyle.I only posted because I'm used to this blog being very honest and this really sounded not so honest.Either way I'm sorry, please delete the comment, it looks horrible and I'm just not the kind of person that goes around on people's blogs posting shit.Again, I'm sorry I posted that.

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