Now Reading: 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow

4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow

Tues 4:37pm — it’s just the king & I at home this afternoon. The wife went to her parents house for a big New Years dinner with her sibs & nieces & nephews. The king has been pretty CRAZY the past couple of days so we really didn’t even consider taking him.

He hasn’t had any seizures since Friday thank god. But the combination of an increase in his anti-seizure med mixed with his now ravenous appetite (mostly due to the anti seizure med) mixed with no school or structure for a week equals Crazy Kyle

What does Crazy Kyle look like?

very aggressive, plays with his saliva, spits, has lots of pee accidents, is hungry all the time, wants to watch tv all the time, holds his breath like crazy all the time, clims on bathroom sink all the time, headbutts the tv, headbutts the window, bounces on the sofa, etc, etc, etc.

As the wife was minutes away from leaving for her folks house I was thinking of saying…

“Don’t leave me! I can’t take much more of this! I can’t do this by myself today! I’m starting to lose it!”

But I got a second wind and instead said….

“Go! Save yourself! Get out while you can!!”

And she didn’t hesitate and flew the coop… 🙂

As I’m writing this the king is placing his saliva on the ottoman and headbutting the tv while watching the “Big Red Chicken” episode of Dora for the 89th time this week. There’s popcorn & Cheerios all over the floor and Paula is having a ball vaccuming it all up.

And I’m lying on our love seat, curled up in a ball, in the fetal position, sucking my thumb and chanting this over & over & over..

“…4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow…”

Happy New Year y’all!

Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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30 People Replies to “4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow”

  1. Anonymous

    My family and i are so blessed to have our son in one of the best school systems in nj (BELHAVEN MIDDLE SCHOOL LINWOOD NJ) we are so grateful for all the wonderful teachers and aides who have been working with our son since he was three years old. Our son has come a long way and we know how hard our son works at school and how hard the school staff works with our son. We must say its great to have a break from the everyday routine but we surr do pay for it.There is something as a parent that has me totally concerned and that is what happens to our children living with autism when they become adults. I really do try to keep my head up but its reslly hard not to worry 🙁

  2. Anonymous

    In regards to the comment about up to 7 kids, this year I have 11 and the unit at my closest campus has 16 students.

  3. Anonymous

    I as a parent know how hard it is to work with my child as he get older and bigger it get harder an harder and yes the only place I can drop him off at is school. I don't blame staff for looking foward to their break I look forward to him going to school and mostly to be honest I need a break. As for them calling me when his behavior get out of control,who are they suppose to call ? Look I have face the fact my child will never be able to be mainstream,have a job and lead a normal life and I don't expect the public to love him the way I do,or except him on his terms in life because it won't ever be excepted as the norm,not to think people won't look @ a child having a meltdown in public really !! why not ?? yes I praise these people who work with our children only to be insulted. How do you not even by them a gift for Xmas, better yet why send them when you don't like the staff ? because there's not many if any place's we can send them. So yes they should be happy abt having a break !!!

  4. How did this innocent, meant to be humorous blog post turn into a debate about Special Ed teachers?? Let me be perfectly clear… I LOVE all teachers. My dad was a teacher… and people that CHOOSE to be special ed teachers, or aides, or therapists I LOVE even more!!

    In one of my other posts I wrote…

    "When you enter this autism world you meet the most AMAZING people. Of course we’ve become good friends with a lot of the autism moms & dads in our lives, and yes they are amazing. But even more amazing are the people who CHOOSE to work with our asd kids. I didn’t CHOOSE to have a kid with autism. It just happened and I’m dealing with it as best I can. But the people that care for our son every day? The teachers, therapists, aides… Most of them CHOSE to work with kids with Autism. For most of them this is what they wanted to do with their lives. And to me that BLOWS MY MIND. I mean y’all know what our kids are like. Most of these people should be up for SAINTHOOD! And then I run into a few autism moms that change careers after their kid’s diagnosis to become autism teachers or social workers working with asd families. To me they are the most AMAZING of all! To have autism at home and then go to work and deal with more autism? How? God bless you!"

    1. christina

      Thank you for your post. As i posted previously i am a mother of an autistic son and a para pro of cognitively/speech delayed 3-5 yr old preschool program. I will state some days not easy to come home, often I feel no difference between work and home lol.But I remind myself I did choose to work with these chilrdren, as I have my bachlor's in elementary ed but unable to find work. And its because of them and my son I have decided to go back for my masters in special education with ai endorsement. Yes I know crazy right? But I find many don't understand autism even parents themselves. Hell there are days I don't understand it because as you know often there is no logic in autism. However there are teachers out there that should not be teaching in special ed field, general educations teachers that dont or won't follow an IEP, and i want to be able to make a positive difference in these children's lifes. I want to be able to educate others to be autism aware. Thanks again for this post.

  5. Anonymous

    you really are an inspiration in our household. we finaly got a diagnosis on the 6th dec 2012 and before then i stayed away from all things autism with the thinking i will only partake when i know for sure. well now i know for sure and the day after we had our diagnosis a friend of a friend sent me a link to your facebook page. you have been in our life everyday since. you really know how to express the joys and sadness and frustrations that go along with being an austism parent. im always reading your posts to my husband and laughing with him when we yet again say to each other " thats so true". we have a wonderful 4 year old who is both our worlds and we wouldnt have it any other way. we have no clue what to do about the future and sort of forgot there would be a future whilst we waited for the diagnosis to come. we are muddling through as we go and loving the beauty of our little one. you make us laugh and make us feel part of something when we have felt so utterly alone, you came into our lives at just the right time and again, you make us laugh. thank you. you do good, you are needed by so many yet proberbly only thanked by a few. i hope you are lucky enough to have "an autism daddy" in your life making a difference.

  6. Anonymous

    Maybe there needs to be some free programs out there during these breaks if parents need the help.

  7. Anonymous

    As a SE teacher I would like to say that some children with significant behavioral challenges need year round school. It's like sending home a child who needs a wheelchair for a 2 week break without his chair and telling his parents you don't understand why they are having a hard time. When we are at school we have someone who answers the phones, cleans the floors, empty the trash- cooks the lunch and gives us a break. Parents do not.

  8. Anonymous

    My Son is homeschooling and that's the best thing that we have done, it is hard for my wife, but as soon as I get home from work she get a break, they didn't expect much from him at school and at home he is already doing algebra, he is 11, I hope everyone in this blog a wonderful 2013 and keep loving your kids

  9. Anonymous

    I understand your frustration. There are many programs in the community that help during the day breaks and are supervised by people who are trained. Hang in there one more week to go!! Good luck and I have to say I loved the way you focused on your child's situation and social skills and her needs, not focusing on what is good for parents!!

  10. Anonymous

    3 months off over summer. 3 weeks off over Christmas. 1 week off over spring break. Then all the other breaks that happen throughout the year… My child needs to be in school for her social needs and her education. I am desperate for her to go back for her sake – she needs the routine and the expertise of the teachers. She's been off two weeks already and we have another week to go. I don't understand why it's ok for children in this country to have so much time off. Kids in the UK (where I'm from) don't take this much time off.

    1. Anonymous

      Are you kidding ? Your child need you to step up, you can work w/YOUR child on social needs take him/her out in the public around people or family. Ask the teacher for work sheets to work w/YOUR child @ home,have a routine @ home for when school is out your child NEEDS the expertise of a parent who should not be depending only on school to do all the work.

  11. Anonymous

    Thank you for the last 3 comments! Teachers would suggest even offer ideas of what can help. With behaviors and activities! We love YOUR children. So. Give us a very well deserved break too!!!

  12. Anonymous

    Thank you for your comments, love it ( school is an extension of home) As a teacher I agree some parents do not realize we are here to help your child but with the consistency at home, they would progress so much more. My son is proof.

    1. Anonymous

      So true !!! THANK YOU !!!!

  13. Anonymous

    As a se teacher of preschool and a parent of special needs child, I do agree breaks are hard on kids being out of rountine. But I always plan stuff for us to do as well as activities from OT and teacher. Most teachers are willing to give some ideas of things your child likes to do that you can do at home. I understand your pain with behaviors and not having support but the teacher in me wants to say teaching starts at home, you are your child's first teacher. I don't know your child nor servity of need. But from reading it sounds as you have dificulity handeling behaviors, so I am sure the school does too. So as much as you want that break so do teachers. But they want what's best for your child too. So my advoice work with the, get some sugestions for handeling behaviors at home. Good luck!

  14. Anonymous

    At then comment about teachers not caring about what happens to the parents at home was just plain funny. As a SE teacher, that is the kind of situation we encounter daily with more than. One child at a time. So when you ask is two weeks too much? No it is not.

    1. Anonymous

      I so agree yes I look forward to all weekends and school breaks and most of all Summer break. Why shouldn't we ? we love that time with our families,friends to read etc.. Yes staff know you didn't choose to be a special needs parents but staff didn't choose it for you. As for the turn off about staff feeling relief when students leave. Sure !! like if you walk into the school and they say they can't pay you as much as you may love your students I'm thinking you would take that concern where they will pay you for your love.Parents need to be able to handle their child the way they want others to. It have always amaze staff that when something happen to a child @ home it's call a accident (only one child to watch)such as running away. Now this same thing happen @ school OMG it's a incident parent want to sue, have a fit on staff for not being able to control YOUR child who refuse to listen to verbal demands but staff is not allow to touch them plus there are other students up to 7. So yes staff say as long as they were with their parents that way it's not a incident it's a accident. Yes I wanted to educate !! but not be attack and change the diaper of a school age child but I do because I'm pay and no what happen @ home is not my concern how can it be ? We have families and issues in our home's as one person wrote your child,your issuse.

    2. Anonymous

      I still. Cannot get over your comment that it is my choice to be a se teacher. We choose to be in the profession because we try and help the students to thrive In the community and be better people. But it is such a turn off and a disrespect to the profession when comments are made that the staff was thrilled on the last day before vacations! Aren't you happy when your going to be on vacation? I personally love my students work very hard at school and home to. Help them in any way I can. Learning and changes in behavior begin at home. School is an extension of home, not vice versa. And yes I. Know you didn't choose to be a special needs parent.

    3. Anonymous

      Your choice to be a special Ed teach. Not my choice to be parent of special needs child. Long breaks are hard on kids, we do our best to plan ahead but it is still a challenge for many parents that don't have help or the know how to deal with behaviors the way that teachers and therapists do

  15. Im chanting go to your happy place, got to your happy place lol We survived! ! Only one broken window, one hole to patch, 3 vomiting episodes, escaped the house twice in socks and t shirt, lost glasses twice, overflowed toilet once and locked me out of my house once. Im back to work and hes back to school tomorrow woo hoo! ! I can nap at my desk, if I get caught I raise my head and say "AMEN" 🙂

  16. Anonymous

    It was funny to see how happy the staff was on the last day of school for a 2 week break. One of the parents ask a parapro don't you feel 2 weeks is to long for the students to be off, it break their schedule ? parapro said didn't you know in June that school would be out why didn't you as a parent get your child ready for this and why don't you want your child home with you for 2 weeks seem like parents need a iep @ home, she was shock went to the office and was just blow off by the principle saying you ask she responded feel free to call the board.So right after they go back they have another day off within the week,plus they pray for snow days. The fact is they don't give damn what happen to parents @ home or the children they just say that's our problem not their's. Hell they allow my child to sleep in school I ask them not to let him he'll stay up all night but all I hear is they can't stop him so my choices are he sleep there or I can pick him up and keep him awake @ home say it's against his right not to let him sleep check it out and I have no legal leg to stand on. It's up to me to correct his sleep pattern @ home not the school. Needed to vent.

  17. Good luck with the next few hours! I'd be very interested to read about your plan for Kyle once he ages out of the school system. Do you have a plan? Does it even make sense to have a plan with so much unknown? Just interested in your thoughts.

  18. Oh my I feel your pain! My six year old has punched me in the head about 6 times today. No school for us until Monday and my husband goes back to work tomorrow. Kinda want to cling to his legs in the morning but I guess someone has to earn the mortgage. ~Amy

  19. Anonymous

    How many times have we all thought, "I can't do this anymore!" Kudos to you for letting the wife get away from the insanity you call home. I feel for you…..just keep chanting away….Let's hope the hours pass quickly.

  20. lol ur awesome but I think every parent in the usa is chanting "bedtime soon n school starts tomorrow!!!! lol Be blessed!!!!

  21. We don't go back till Monday!

  22. Susanne

    Tomorrow will come! You will get a break! You are a wonderful dad for letting her escape. 🙂

  23. Char

    Ha!! You just described my day!!

  24. its been a long break for us, too!