Friday, 15 January 2016

A Difficult Update

This is a very hard update to write.  And it’s written by a mama at her wits end.

I knew when Jack had to change schools that it was going to cause enormous stress for him-  that he would have difficulty coping, that he would have a burst of behavioral issues similar to what we saw at home over the summer and this fall.  I guess I didn’t realize how bad it would get.  It does not help that one of his ABA practitioners left literally 3 days before we had to tell him that he was changing schools, that the replacement person fell through and he has been without anyone 3 out of 5 days for almost a month.  That doesn’t help at all.


It doesn’t help that the people surrounding Jack in all areas of his day are strangers, people that don’t know his anxiety, people who don’t understand him or know his history.  People who don’t know how to work with him.  I want to scream.  I want to throw something and have a behavioral outburst.  I want a turn. 

I don’t get one.  Instead, I am expected to remain calm when I want to tell people to get their heads screwed on straight and help my son.  To smile and act normal as I explain to them that this is week TWO and by definition the period when he is going to have the hardest time, as he comes to realize that this is indeed permanent- that he will not be at school with his friends anymore, that he won’t see the aides and teacher who knew, and nurtured him for the past 4 yrs. anymore.  I am expected to deal with a bus driver who wants to sit him at the back of the bus by himself because of two verbal outbursts, when what she doesn’t realize is that this is only going to make it worse.  I am expected to be dandy with the school calling me and asking me to get him on board with doing his work this morning- to talk to him in the middle of a meltdown and “fix it”.  To deal with them telling me they are going to give him “a good month”, before we have to meet.  This in my view means, they want him out.  Already. 


I am expected to smile through him coming home from school crying many days, telling me that the principal told him to “cry all he wants”, and him sobbing that he never wants to go back to school again. 

And I can’t handle it.  I can’t.  Because this fall was already traumatic for all of us.  And the people surrounding him now don’t seem to be giving him a chance.  And I can’t make them do it. 

I wish I could put him in a private school.  I wish I could find people to work with him who love him.  I wish I could make his ABA be consistent, I wish that asking for someone to come 2 hrs. a day 5 days a week and do an effective job wasn’t asking for the moon.  But apparently it is. 

I am scared to keep him home, I am afraid to put him on the bus.  I am afraid to make a work call for fear the school will call.  I am afraid they won’t call when something really serious is going on. 

There are days lately that I just don’t feel like I can do this anymore.  I don’t know who in this universe thought I was strong enough to do this for two kids, but I feel like they were wrong.  I am tired and I am scared.  I don't know how to advocate for him at this point, and I don't know what to advocate for. 



  1. Prayers to you Jenny. I pray that things get easier for you and your family.

  2. We're praying for you and that you'll get the people around you who you need.

  3. This is your New Normal and as your kids gets older you will get used to much worse than this. Many people with autism have huge problems with school, that is why so many are home schooled. When teachers, aides and therapists come and go there will be crises, but life goes on.

    At least this son is fully verbal and can explain what happened at school. Imagine if he was non-verbal and had problems at school. What if he had epilepsy and then every time the phone rings it might be school, telling you to come get him, this is the life of many Autism Moms. Put in that light, todays problems are not such a big deal.

    In most autism families one parent (or even both) ends up quitting their job, so at least you are ahead there.

    In a few years you will no longer care about the school bus driver's attitude or the therapist who you thought was so dedicated, who then quits with no notice. You just adapt and get used to it. Your family love your boys, but other people have their own priorities and will put those ahead of your boys.

    1. I appreciate your response, and I am sure that you didn't mean to demean our family's situation with your comments, but you did. Yes, this son is fully verbal, and my other son is nonverbal, and I am here to tell you that currently, accommodating my verbal son? much harder. I do not talk about the beatings I have been enduring at the hands of my son, I choose not to disclose that here, I am not looking for pity, but did I believe that I would be wearing clothing to cover my arms purposely already? no. My other son has abnormal eeg activity, although it has not reached the threshold of seizure activity, but I assure you that I have been called to get him for "listless" behavior several times since September. My family's journey is just that, our journey. I choose to share it on my blog, and I want others opinions. But please do not tell me that my situation is nothing compared to what I'm "going to endure", because I have been hearing that forever and experiencing that trajectory all on my own. It does no good to invalidate other's experiences just because you don't think they're "bad" yet. We are all in this together, to support each other

  4. Prayers for you and your family Jenny. Hoping for things to get better soon...

  5. I read you blog and felt I was reading my own. My son changed schools this year and my salvation is a new teacher. The summers are terrible for us. Spring break makes me cringe. And he has behavior issues. We are called to the school often. My son is also a runner and hider. Took four teachers to find him. Our city now has tracking bracelets and we are getting one for that "just in case scenario ". My son is older than yours and I can tell you some stories where people say "if that was my child......". If only it was that easy. I can tell a story to non-affiliated autistic parents and they look at me dumbfounded. I can tell the same story to affiliated parents and after the first sentence they are cringing. To say I understand what you go thru would be a lie. Everyone's story is different. I will send prayers to your family in hopes life gas better.

  6. Hi, sometimes this journey really sucks! Step back take a deep breath and prioritize. Why is he going to that school? Is it the best one for him? His principal sounds like an ass! I feel like you need to make social stories for the people he deals with...just to be clear, not for Jack but for them... for example

    this was Jack's old bus he had friends on it and knew the route, he was happy. This is Jack's new bus, with new people, a new route going to a new place. Please be patient with Jack as he adjusts to the new conditions. He would like to sit with someone who can help him remember that it will all be ok and not to be scared. You don't want Jack scared and alone at the back of the bus screaming for help do you? Please help make Jack's trip as calm as possible. These 3 steps will help your day and his.
    It astounds me that people have such a difficult time with compassion!
    I wish I could share my son's school with you... it isn't private but the staff is exceptional. The principal interrupts whatever meeting she is in when the bus comes because one boy likes a deep pressure hug to help with the stress of traveling. Best wishes, Lee-Anne