So yesterday I wrote a post detailing a rough IEP meeting we had with regards to our 12 year old autistic, non-verbal, epileptic son. You can read that HERE.
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And many people left comments on the blog & FB page saying “hang in there”, and some gave us some really good advice.
Others gave some advice or made suggestions without knowing the full picture, as if they didn’t fully read the post, or were new to the Autism Daddy page / blog… advice like “try to get him in an all autism classroom”
So, I just wanted to clarify a little bit more about my son and his school situation.
— They never called him a “problem child” in the IEP meeting. That was my phrasing after hearing all of the reports of his Problem Behaviors (PBs)
— He is currently in an 8:1:2 all autism classroom and has been in classes like this with this ratio for many years.
–He’s been in this classroom for just this year, but in this school for going on 4 years
–Many of the same staff & kids have been consistent over those 4 years.
— He has always had a 1:1 aide.
— He’s had periods of problem behaviors pretty much every year for the past 4 years. His MO is that he has a honeymoon period each school year and September thru December are usually uneventful and then his PBs start up in January.
–However, this year’s PB’s have been much worse and much more consistent at school, not nearly as many PB’s at home.
–They have done a behavior evaluation and taken lots of data and they don’t see any triggers or any rhyme or reason to the behaviors. The only thing they’ve noticed is that he has somewhat better behavior on the days when he has seizure activity and therefore naps at school.
— They have not yet come up with a behavior intervention plan to curb the behaviors, because basically Kyle is one tough SOB. He never has preferred items (or they change day to day), and he doesn’t work for rewards. They just can’t figure out a good “plan”.
— It sounds to me like he just doesn’t want to be challenged and will hold his breath, spit, flick his saliva, hit, etc, many times with a smile on his face, for hours at a time during the school day when any demands are put on him.
— The school and his teachers and aides are truly trying their best, and he has made some nice progress in many areas over the past 4 years. However, you can’t blame them when they look exhausted at the end of the day. It’s tough getting hit and/or playing goalie to protect Kyle from others for 6 hours a day, 5 days a week.
— He is aging out of the school he is in and would be going to a new school in September regardless of the PB’s. However, we are currently unclear as to where he will be going over the summer.
— He has always had summer school / ESY (Extended School Year) which is a 6 week program from early July thru mid August.
— The new school that they are proposing would be the same teaching methodology, with some of the same kids, but would be a lot further away (because of traffic).
— He currently goes to school “out of district” meaning not in the city where we live. They placed us out of district YEARS ago because there wasn’t a perfect fit for him within our city’s school district.
— We feel like we’ve seen all or know all the other possible schools that we could send him to that don’t involve a crazy long commute over a bridge at rush hour… and none of them seem like a proper fit, and none seem better than the school that they are suggesting.
— My wife currently, and always has, driven Kyle to & from school each day. I wrote about why that is in an old blog post that you can read
HERE— The school he is in now and the school they are proposing for next year can be somewhat considered “private schools”
–Because of his epilepsy and his frequent seizure activity any school we send Kyle to must have a full time nurse on staff to administer emergency medications if necessary.
And here’s the last little note, and the one that I’m sure that I (or most likely wifey) will take the most shit for…
–Homeschooling him is really not an option for us. I don’t think either of us are mentally strong enough to do it. I know that I’m not, and wifey wants no part of it either. We like being his mom & dad. I think we do a damn good job at being mom & dad, and even just being mom & dad of King Kyle is not that easy. And we are in no way perfect autism parents, but I think we do a damn good job…We’ve found our way over the past 10+ years of being autism mommy & autism daddy…
But to add teacher onto our roles? I know we’re gonna take shit for this, but it’s just not feasible. The king needs a happy, mentally healthy mom & dad, and if we had to think about teaching him 4-6 hours a day I think we’d lose more of our marbles. For those of you that are strong enough to do it I applaud you, I am jealous of you, I am impressed by you, and I tip my cap to you. We just can’t do it. If I’m being brutally honest there’s just not enough happy pills that we could take to make homeschooling feasible…
So there you go. There’s my follow-up on yesterday’s IEP meeting. The takeaway here is that the school is doing their best, the school that hope to send him to September might just be the best we can get right now, and we are evil people that know that we are not capable of homeschooling our son.
I will be prepared to be crucified now…
🙂
View Comments
No judgment, our son is 15...we have been in very similar places...you make the best decisions you can within your circumstances. Hang in there.
totally agree with no home schooling you are the caregivers you also have to look out for you
I couldn't do it either, it wouldn;t be good for me or my son. All you can do is your best which is exactly what you do, day in, day out. Love to you all from UK x
I work 1 on 1 with a student with very similar behaviors and we've done all the fancy behavior analysis stuff and nothing works. We've all agreed it's hormones which sucks as an answer because there's not much you can do but I think about when I was going through the teenage hormone stuff and then I think about if I hadn't been able to express all my angst & realize I'd probably be flinging spit on people too.
Pre-ASD, we were all about homeschool. With this diagnosis, we are all about public education. It has increased the number of people in our corner and helps keep our sanity. It takes a village, and with ASD, it takes one full of highly trained people. Autism is a spectrum, homeschooling may work for some families but no judgement from us!
Same here. I had these grandiose plans for homeschooling our twins, but I just need a break from my ASD boy, as much as I love him.
My kids got the best of me because I chose not to homeschool. There are different types of parents just as there are different types of kids. As my kids remind me it's always 'different strokes for different folks'.
I feel terrible for mentioning it in my comment yesterday. I applaud you. I have been in the adult DD field for a very long time. I applaud you. You deserve an applause and a night out :) Sorry If I offended you. that was not my intention
Ummmm if you do take shit for no homeschooling its total bullshit. Just gonna have to throw that out there. I'm a mom, I have 3 kids. Only one is on the spectrum, the thought appeared in my head when he was in pre school. But now that he's been in full time school? Holy hell I can actually get things done! LIKE THE DISHES!!!! Holy smokes. Yea, I would lose my f'in brain if I didn't get that break, even if it isn't a guaranteed break 5 days a week, and even if it is mandatory I have to stay home as I'm called to the school on a regular basis. There is always the rather random but much glorified naptime, that is completely non existent when boy is home.
ditto! you are a rock star! You have to do what is best for you and your family! I couldn't homeschool either....
That's the time of year my son is the worst behavior wise too. I think it;s a sensory thing. Being stuck indoors, not getting enough physical sensory input from going outside makes him terrible.
Also, I can totally see where homeschooling could make people crazy. The mental fatigue from never having any autism downtime would be very difficult.
I couldn't home school either. My son gets the best of me because I have time for myself outside of work, and I need that desperately to stay healthy in all areas of life. I work at a high school where they've asked me to work with ASD kids and I've respectfully declined. I know I'm very good with them (that's why the want me), but I also know I cannot do at home what I do at work, and I cannot do at work what I do at home. It'd just be too much.