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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…
🙂
every person i know that has their special needs kid in home schooling isn't teaching their kid shit. they're just trying to protect them from other kids picking on them… or they're religious nuts.
No way in hell could I home school my ASD 2.5 year old. I have no patience to teach my normal five year old. That so makes me sound like a bad mother but I know what I am and am not capable of.
You are his parents first and foremost. Teacher is different type of relationship. Homeschooling is not for everyone either. Just like being a special ed teacher you need to have a calling for it and if you don't it just won't work. Best of luck finding the right situation for everyone esp the King.
Amazing post.
Homeschooling is not for everyone- meaning our children. My son is higher functioning then your dear boy and was getting further and further behind in school because of lack of services and accountability. He needs the one on one homeschooling gives him. I can not work if he is in PS because of all the calls so I may as well Homeschool and be his one on one. I would love to be able to send him off to school sometimes. I could really use the break. I would love to work- surviving on less then 33,000. A year is killer. I also love the time I spend with him because I get to see the improvements as they happen not on a note from a teacher. Every child and every family who deals with this DX is truely different and do not ever let anyone judge you harshly. You and your wife know better then anyone else what is best for you and your son. Stay strong and bless you for this blog and the inside look you give so many of us.
I admire not only your dedication to your son at a really, really tough time (I mean, who wants to hear their child is having disruptive behaviors at school?), but also your honest description of your family's circumstances.
Working as a Yoga Therapist at a therapeutic day school, I can tell you that often when children are displaying problematic behaviors, their teachers and aides feel even more responsibility for them. They are giving you this painful feedback because they love your son and want him to succeed at school, at home, and everywhere else.
I wonder if your school would be open to incorporating some yoga into your son's day? I work with the children who are having the most difficulty relaxing in at school and have seen tremendous effects. Your son's behaviors are not unusual to me and a trained Yoga Therapist, who is experienced in working with children with special needs, will be able to help your son relax at his own pace and remind your son of yogic strategies he can employ during school and elsewhere.
If you're looking for a Yoga Therapist in your area who specializes in working with children with special needs, you could check out http://www.specialyoga.com, which lists providers of the Yoga for the Special Child method. Best of luck to you on this wild adventure with your son!
Erin Haddock
http://www.5keysyoga.com
I don't think any Autism Parent should be "crucified" for admitting that they cannot do it all. It is sad that our society feels the need to attack the parents of Autism – especially those who are really, and truly trying to do their best. I myself have a daughter with Autism who is non-verbal – and it is challenging. I have just entered the school system….and am already noticing problems with them, not my daughter. My hat is off to you and your wife. Most people that don't have children with Autism really don't want to be bothered with what we have to go through. They just don't want to deal with it. So I do my best on trying to inform others, but also parenting how I feel is best – regardless of what others think. I love your blog because it is real – and helps me to know that I am not alone on this journey. Keep up the good work.
A Loyal Reader
I have a 7 years old Autism angel, he is 1/2 of my life (my 1 year guy is my other 1/2) i love him in a inexplicable way, las week he started summer school , ando for the first time he is using a school bus service, the first time the driver came to pick him up, he was ready an anxious, but i was not, when he leaves in that little white bus, i felt like i was loosing him, i cried like if someone close has passed away, but no matter how much i love him, i realized he needs to know new people and be involved in new situations for his personal development and needs to learn to do thing by himself. That said, even i love him far from comprehension, i cannot br homeschooling him. I think he needs to feels when he come home, that he is coming to his nest, where he is safe and loved. In school he has to work, in house he has some responsibilities that i'm trying to give him,(basically with his room and clothes) but with all the love i have to give. This year he is going to be installed in a regular classroom for 1 – 2 hours a day, now i'm getting stressed out, because i'm not ready for all that bullying BS. I'm afraid that i'm going to have some majors issues with some others parents that sucks in their "parenting skills" .i'm just not ready, but i have my papa bear skills activated, so lets see what happen. Hang there buddy!! everything we do is for them, dont take BS from no one because the King needs to feel after a long day at school that he is arriving to his kingdom where his love and care is always there!! Take wifey for a night out and be naughty!!! Drink some beers, and have fun, that is like charging batteries for another round!!!
New to your blog, so Hi!
As autism parents we are already exhausted daily, and we are constantly trying to find ways to get through the day, to add home schooling on top of the mountains we already climb everyday?! No way!! Giving you a hard time for not wanting to homeschool is outrageous!! Sounds to me like your "King' has great parents who are trying harder everyday for him!!
Excuse the grammatical errors . I posted without proofreading.
I cant judge anyone. I do homeschool because he wasn't being engaged. First I haven't had no sleep in 7 years.I am single. He goes every where I go. I'm stressed out but I wasore stressed out if I left him there being bullying because honestly since each child is of varying degrees. He was misdiagnosed for first 5 years. Five and vocab of 20 words.whole nine.I been the therapist,teacher,parent. I am wore out but if I hadn't been disastrous,fighting with insurance,sitting behind pexi glass wasn't option and after first year of full time K a mess. I am here to say I no its hard but I had no option. No family and I can't tell you bits easy but it was rest now or wait later. He use to elope at going age. one reason for his status is a patent who didn't wait for expert and took charge and decided his path.I'm tired but it's worth it. And no one can tell you what's best..
could puberty be to blame for the changes in his problem behaviors? just a thought.
(((HUGS))) to you all and while I am not completely in your situation… I completely understand the not homeschooling… I virtual schooled my oldest for two years (4th and 5th grades) and I now have a much deeper respect for the teachers that do get through to him. I am not mentally stable enough to deal with that again 🙂 I will fight the schools and get him all the accommodations that he needs and deserves, will fight to get him placed in classes that challenge him, Will email teachers for missing work and make sure I know exactly what needs to be done but I can not and will not school him here (for both of our sakes)….
Have you looked into Celebrate the Children? I know it's far from you, and unfortunately alot of us ASD parents end up moving to be closer to the appropriate school. I wish you all the best.
I was (still am) a special ed. teacher in a school in WNY similar to what your describing. I taught until my own 2 year old son was diagnosed with autism, Now I'm on a little break. despite my 13 yrs exp. I refuse to be my sons teacher. he needs his mom and that's what I need to be. he has a whole team of teachers looking out for him but only one mom and dad! parents know what's best and you'll make the right choice in the end it's just hard. I've seen many kiddos like Kyle and sometimes they just don't like the demands of school and stimming or engaging in PB's is actually more reinforcing then anything else a teacher could give him. I hope it works out for you all! I have also had students make progress with Kennedy Krieger Institute for another perspective.
Kyle is very lucky to have you, you'll get there!!
You should not feel bad at all for not wanting to take on the role of teacher! You are so right, the King needs you guys to be in a position to be the best parents possible to him and being totally burnt out and not having any break would not be good for anyone. You guys are great parents and I really love reading your posts. I worked in a home for autistic adults, with many behaviors that are similar to your son, and I really loved my guys but 35 hours a week was more than exhausting… my point is you and your wife deserve a break. You guys deserve so much credit for all you do for the King, you are amazing parents! Do not listen to anyone who doubts your decisions, you guys know your lives and your son better than anyone else.
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.
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.
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….
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
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'.
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.
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.
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
totally agree with no home schooling you are the caregivers you also have to look out for you
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.