New here- Feeling defeated

Hi all

My 6yr old son has recently been diagnosed with childhood autism, they said he will most likely live a "normal" adult life. The occupational therapist said his main sensory is deep pressure, for him to have a release he needs pressure against himself, this can be from hugging something tightly, stamping, pushing etc. 

Recently, he has started grabbing children round the neck, even with the dangers explained to him and being disciplined it hasn't stopped him from doing it. I'm worried he will end up isolated in school, even his brothers are starting to fear him and how he will be. Today, the school also said about reducing his school day as they don't want to exclude him, but I'm worried doing that will have him thinking that if that's what he needs to do so he doesn't have to go to school then he'll do it more often. I've purchased items to try and help with this, including a vibrating snake, firm pillow, body sack, but I feel that when it happens he's not near these items and his last thought is to go off and find them, so just grabs the nearest child. There are triggers, but not ones that can easily be removed, as it can be a comment a child makes, the way they look at him etc. He also doesn't like to feel embarrassed, so he doesn't accept fault with himself and will blame someone else for whatever he may have done. 

I'm just really struggling with it all at the minute, I'm upset for him as I don't want him to become isolated; I'm upset for my other children as I don't want them to fear him and I want them to have the attention from me too; and I'm upset for myself, as it feels like nothing I do works and I'm just letting everyone down. 

If anyone has been a similar situation then please share you're advice, I'm looking for any support I can get. 

 

Thank you 

  • wish i had advice for you. what i do have is to let you know i heard you, i'm in a similar situation, i feel defeated too and you are not alone. it's all extremely overwhelming
  • In reply to azi:

    I'm sorry you are going through this situation. I know how difficult it is. My son was also aggressive at school, at day care, but almost never at home. In hindsight, I realize it was because we unconsciously made accommodations for him that made him feel comfortable and safe at home. You do learn your child's triggers and you tend to avoid them.

    School is another story. Because my son was aggressive, this "bought us" support. I learned from another Mom, and this is sadly true, that the worse your child's behavior is on paper, the more support they will be allocated. So any child that is injurious to self or others, or runs away, will get support. The others tend to fall through the cracks. It's important you acknowledge to yourself and the school that your son's behavior is challenging.

    So the first thing I would suggest is work with the school to see how you can get a classroom support worker for your son. That will make their lives easier, too, so if it can be done, they'll be happy to make it happen.

    Also, make the teacher your friend. I used to volunteer in my son's classroom on Monday mornings. I wouldn't work WITH him, I would just help out the teacher. It made the start of his week a little smoother. Ask if they can keep a two-way behaviour journal, so not only do they let you know what's going on, you can let them know,, too. If he didn't sleep well, or has a cold coming on, or he has had an argument with a sibling or couldn't find his favorite toy, he'll be out of sorts and that will affect his behaviour at school. It will help them to know that.

    If there is an autism consultant associated with your school board, ask the school to bring them in to assess the classroom. They can make recommendations.

    Most behaviors arise from uncertainty. Ways the school can help are:. Ten-minute, five-minute and two-minute warnings about big transitions. A visual pictorial schedule of the day so he knows what to expect. Clearly outlined expectations. One and two step directions. More than that is confusing.

    My son, who was a smart guy, told me repeatedly punishment doesn't work. He's right. It doesn't. What works is avoiding the big blowups before they happen. He doesn't know his triggers yet, or how to avoid them. Adult help identifying triggers and redirecting him is needed. And once he's going to blow, he'll blow, and he needs a quiet space to calm down. The quiet space can be a great redirection area when he's escalating.

    There are some fantastic resources out there. I don't know where you live, but there is a Canadian bookstore called Parentbooks, and they have online sales as well as their store. I would recommend:

    When my Anxiety Gets Too Big (used to be called "When my Autism Gets Too Big"). A workbook on recognizing triggers with your child. It uses the 5 point scale to identify feelings, which a lot of therapists use. 1 is calm, 2 normal, 3 getting around up, 4 ready to blow, and 5 blowing up. The idea is to help them recognize their feelings, and that when they get to 3, they need help to redirect. Eventually, they learn to do this themselves. And they do!

    ANY book by Brenda Smith Myles. She is an OT and she's fabulous at identifying triggers and suggesting remedies.

    A great book for teachers and other students, because it's short, and teachers want the Coles Notes version of your child, is

    So please don't beat yourself up. Know that your son's behavior stems from anxiety. And discipline just doesn't work to reduce anxiety! My son is now 19, and white he can still be pretty darn stubborn at times, there hasn't been an aggressive incident in eight years.

    He is a very insightful guy. So he was able to explain it to another parent of an aggressive Aspie this way:. "When I was younger, I would see something - something I could push over, or someone I could hit, and think 'I could do that'. I would know it was wrong, but I could do it. And when I got wound up enough, I WOULD do it. Now I still see those things, I just don't do them anymore."
  • In reply to azi:

    I'm sorry you are going through this situation. I know how difficult it is. My son was also aggressive at school, at day care, but almost never at home. In hindsight, I realize it was because we unconsciously made accommodations for him that made him feel comfortable and safe at home. You do learn your child's triggers and you tend to avoid them.

    School is another story. Because my son was aggressive, this "bought us" support. I learned from another Mom, and this is sadly true, that the worse your child's behavior is on paper, the more support they will be allocated. So any child that is injurious to self or others, or runs away, will get support. The others tend to fall through the cracks. It's important you acknowledge to yourself and the school that your son's behavior is challenging.

    So the first thing I would suggest is work with the school to see how you can get a classroom support worker for your son. That will make their lives easier, too, so if it can be done, they'll be happy to make it happen.

    Also, make the teacher your friend. I used to volunteer in my son's classroom on Monday mornings. I wouldn't work WITH him, I would just help out the teacher. It made the start of his week a little smoother. Ask if they can keep a two-way behaviour journal, so not only do they let you know what's going on, you can let them know,, too. If he didn't sleep well, or has a cold coming on, or he has had an argument with a sibling or couldn't find his favorite toy, he'll be out of sorts and that will affect his behaviour at school. It will help them to know that.

    If there is an autism consultant associated with your school board, ask the school to bring them in to assess the classroom. They can make recommendations.

    Most behaviors arise from uncertainty. Ways the school can help are:. Ten-minute, five-minute and two-minute warnings about big transitions. A visual pictorial schedule of the day so he knows what to expect. Clearly outlined expectations. One and two step directions. More than that is confusing.

    My son, who was a smart guy, told me repeatedly punishment doesn't work. He's right. It doesn't. What works is avoiding the big blowups before they happen. He doesn't know his triggers yet, or how to avoid them. Adult help identifying triggers and redirecting him is needed. And once he's going to blow, he'll blow, and he needs a quiet space to calm down. The quiet space can be a great redirection area when he's escalating.

    There are some fantastic resources out there. I don't know where you live, but there is a Canadian bookstore called Parentbooks, and they have online sales as well as their store. I would recommend:

    When my Anxiety Gets Too Big (used to be called "When my Autism Gets Too Big"). A workbook on recognizing triggers with your child. It uses the 5 point scale to identify feelings, which a lot of therapists use. 1 is calm, 2 normal, 3 getting around up, 4 ready to blow, and 5 blowing up. The idea is to help them recognize their feelings, and that when they get to 3, they need help to redirect. Eventually, they learn to do this themselves. And they do!

    ANY book by Brenda Smith Myles. She is an OT and she's fabulous at identifying triggers and suggesting remedies.

    A great book for teachers and other students, because it's short, and teachers want the Coles Notes version of your child, is

    So please don't beat yourself up. Know that your son's behavior stems from anxiety. And discipline just doesn't work to reduce anxiety! My son is now 19, and white he can still be pretty darn stubborn at times, there hasn't been an aggressive incident in eight years.

    He is a very insightful guy. So he was able to explain it to another parent of an aggressive Aspie this way:. "When I was younger, I would see something - something I could push over, or someone I could hit, and think 'I could do that'. I would know it was wrong, but I could do it. And when I got wound up enough, I WOULD do it. Now I still see those things, I just don't do them anymore."
  • In reply to SMW:

    Sorry this posted twice! I was writing on my phone and it keeps randomly rebooting. So it didn't send the complete version of what I wrote.

    Parentbooks' website is parentbooks.ca . Browse their booklist. They're phenomenal. If you can go to the store (it's on Harbord Street in downtown Toronto), it's even better because then you can look through the books and see what works for you.

    The "Coles Notes" version of Asperger's (if he has Asperger's, or high-functioning autism - if you have been told he will lead a "normal adult life" then he probably does) is called "Can I Tell You About Asperger Syndrome?" It's available on Amazon - here are the details. Really good for teachers, Principals, grandparents, family friends who don't "get it" (and most of them don't!). It's a quick read but very good:

    www.amazon.ca/.../1843102064

    Also, "Amazingly...Alphie!" by Roz Espin. It's a great book to explain to your child that they are different, that sometimes they blow up, but they have skills nobody else has. Alphie is a computer who overheats sometimes, but can process things in a way none of the other computers can. It's out of print, but it looks like you can still get it on this website:

    www.harmony.ca/.../

    "Social Stories" by Carol Gray are really good concrete ways of working on appropriate behaviours with your child. There are a whole series of these books aimed at different ages.

    The other thing I wanted to say was work with the school on positive reinforcement. Having a classroom assistant is really helpful with this - it's a lot for the teacher to do, but if there is someone in the class who can monitor his behaviour and keep track, this works wonderfully. Chunk his day into small chunks - 15 minutes, 20 minutes, half an hour. For every chunk that he does well, he gets a sticker. 10 stickers (for example) and he gets a reward! It could be computer time or staying up 15 minutes later at home - whatever. But it will motivate him to do better.

    "IF and THEN" statements also work. When he is upset because he has to do a chore and isn't getting to do his favourite activity right away, it's helpful to illustrate that IF you do this first, THEN you get to do your favourite thing. THEN is the reward for IF. Again...positive reinforcement.

    Offering choices. You've probably already figured this one out at home. Instead of "you have to go to bed", using "it's bedtime. Do you want the green pjs or the blue ones?" Bedtime's not an option, but offering a choice of PJs gives him a feeling of control.

    Finally, two more book recommendations: The Sensory-Sensitive Child - very good for kids on the spectrum or other children with sensory issues:

    www.amazon.ca/.../ref=sr_1_1

    And "The Explosive Child" by Ross W. Greene. Excellent book. His premise - and a great one that everyone's got to remember - is that "kids do well if they CAN". No kid WANTS to misbehave.

    www.amazon.ca/.../0062270451

    Remember, if there are all these books being written, you CANNOT be the only one having these problems! You're not alone. Far from it. It is easy to feel alone when your child misbehaves and feel that everyone is judging you, and that you are somehow failing your child. You're not. But your child doesn't tick like every other child and so your parenting won't be like every other parent, either. Education is the key. Unfortunately, we as parents still have to educate the rest of the world (and often teachers, and doctors) on how to deal with people on the spectrum.

    It's easy to get frustrated with your child for not fitting the mould sometimes. Let them have a voice. If you ask a lot of non-judgmental questions, sometimes you'll find some surprising answers. A therapist who worked with my son used to work backwards from outbursts. "So you blew up. What happened right before that? and before that?" He would go into great detail. That helps elucidate the trigger, and also points where my son could have chosen another alternative. It didn't PREVENT future blow-ups right away, but helped suss out the triggers and eventually helped my son to recognize that as he was getting wound up, there were other options.

    Take heart. All this effort that you are putting in now (and I know it's Herculean) DOES pay off. It gets better. Truly, it does. You are your child's best advocate. Someday, they will learn to advocate for themselves, and you can step back. It happens. In the meantime, there are websites like this one and others to connect with other parents who are experiencing the same things. Take advantage of those. And, if you can, take a little bit of time for yourself. Have a bubble bath. Hang out with some friends and talk about things OTHER than your children! Give yourself a break.

    Sorry this is so long. But it's 20 years of experience condensed into an email! I hope all of this is helpful. Good luck and best wishes.