Monday, February 10, 2014

This is Hard

*Editor's note: I'm writing about something I swore I never would within this post. Please understand that I'm doing this not for people to tell me, "I'm sorry," but to make other parents raising autistic children know that this happens to some of us, too. 



I'm jealous of my son's school. Of the teachers, paras, aides, lunch ladies... every damned one of them who see him day in and day out. Why, you might ask?

Because some days I feel like that school gets to see the best of my son.

School is highly regimented and Morgan loves rules. He thrives on them. The color code system of behavior is something he responds well to and he wants his peers to think well of him. At school, he is, I think, "on."

"Morgan held the door open for me today, I just had to tell you that!" "Oh, you're Morgan's mom? He's such a darlin'!" "Morgan's so funny, such a rule follower!"

Yes, he is all of those things. At school.

At home, 80% of the time, he's those things, too. But since he's in his safety zone, he feels free to fully melt down. To lash out. At me. And that hurts me. Literally.

I love my son and I have no doubt that he loves me. We tell each other that constantly and hug a lot.

He loves me so much that I am the person he feels the most comfortable lashing out physically at and then comes to me, while I'm still shaking, and needs to be rocked.

It's rare, but it happens. We both cry, shocked that this swirling dervish has just consumed him again out of no where, but it came from somewhere, as we both know. We try to calm ourselves, him first, me later, and press on.

This is trust, this lashing out only at me, I've been told. I'm thankful it doesn't happen to anyone else, but I'm resentful that no one else "gets" it.

He can be rude. He can be hostile. At homework time, I'm walking on eggshells. I never know what to expect.

Weekends are different. He loves his train movies and going places- freedom.

But during the week? I'm nervous for the landmines that I could trip on.

And it's not his fault, nor mine.

I love my child, autism and all.

But, damn.

This is hard.

29 comments :

  1. I absolutely feel the same exact way!!! Thank you so much!!!! I felt guilty for being jealous!!! Thank you big hugs!!!!

    ReplyDelete
  2. This is exactly how I feel. I'm always walking on eggshells, too, waiting for the next outburst to happen. And at school, my daughter is a perfect angel as well. I have a blog (link to it with my profile here) and a facebook page as well. I enjoy following both of yours. facebook.com/thespecialreds.

    ReplyDelete
  3. This is exactly how it is for us too! The times I mention what happens at home to people, I can tell, they don't get it or they don't believe me. Thanks for this!

    ReplyDelete
  4. Michelle Amond YostFebruary 10, 2014 at 4:30 PM

    You are not alone my friend. I try to remind myself this is part of the gig. And I'd rather get this part of him and school get the "easy" part of him but then some days? I just lock myself in the bathroom and have a fucking pity party.

    This morning? This morning was a morning I wish I could have locked myself away but I had to hold it together and work him through the hard all the while wondering wtf I was going to do with myself. <3

    I feel ya sister. I feel ya. This shit IS hard. Harder than we could have imagined or can explain to those who get the "good" time. I'm SO glad my son gets that "good" time at school. Where HE is relaxed and HE is functioning at his full potential. Even if he gets home and the fucking horrorfest that may occur.

    And I agree weekends? Weekends are fucking fantastic 98% of the time. It's the weekdays. I'm sure it comes from being so "on" for hours at a time and so many people and then he's home and safe and comfortable and just can lose his shit.

    It sucks. And i wish I could protect him from himself.

    I'm babbling and making NO sense but i. get. it. That's the end of what I'm saying. I get it. And it's okay to say this shit is hard and it sucks and you're jealous of the other part of him too. Own your feelings. They're yours and they are okay and a half. xoxo

    ReplyDelete
    Replies
    1. I love your rambling crazy ass, you know that?

      Delete
  5. If your husband hit you and apologized profusely, would you forgive him?

    If he regularly hit you, regularly apologized profusely and insisted he only did it because he loved you SO much, over and over again, would you forgive him?

    So your son Morgan only hits you because he loves you so much? And you're okay with it because, well, he loves you so much? Seriously??

    From your description of him he's a big kid, even at 9 or 10, and you're letting him physically assault you? Then rocking him afterwards so he feels better? Really?? What happens when he gets older and bigger? Will you rock him after he oh so lovingly breaks your bones?

    Have you considered googling "domestic violence" or "cycle of domestic violence"?

    What you are teaching Morgan is that:
    1) it is acceptable to physically assault others when he is frustrated
    2) there are no consequences for physically assaulting people if you love them
    3) it is a sign of love to physically assault the person you love the most in the whole wide world
    4) physically assaulting someone you love is an excellent way of getting their attention and EXTRA love and snuggles.

    Have you considered that you are seriously reinforcing bad behavior? Like, really really horrible totally unacceptable behavior??

    That you are doing immense harm to Morgan by implicitly teaching him that assaulting mommy is okay because he loves you most?

    You're upset that Morgan's classes occasionally roll their eyes at him (subliminal bullying! Violence!! Must be stopped when a 9 yo classmate does it!!) but happy to let him hit you?

    I've no idea how you sleep at night. Or that you are actually PROUD of rocking your precious baby boy after he assaults you!

    Have you considered teaching Morgan that it is never ever acceptable to lash out physically??

    That even though he has autism, his disability is NEVER an excuse for physically assaulting people?

    Or that there are oodles of people on the spectrum that NEVER physically assault anyone, no matter how frustrated they get or how much they love their moms??

    The fact that your fellow autism mommies see this kind of violence as acceptable and par for the course is scary as all get out. (And I'm also willing to bet that these exact same mommies feel persecuted when their kid gets suspended from school or kicked out of cub scouts or gets zero birthday party invitations, in large part due to the sort of horrific, violent behavior that they've been enabling!!).

    ReplyDelete
    Replies
    1. Do you know anyone with Autism or on the Spectrum? Have you spent a day in the life of a Mom of an child with Autism? I have. Everyday for the last 7 years, and it wasn't until 3 years ago my husband and I found out that my son was on the Spectrum. I know exactly where she is coming from. Unfortunately my son has more "bad" days at school than "good" days. Most days are pretty hard, but he is my son and I will move heaven and earth to help him. If he has to lash out I would rather it be at me than someone else. If you have a child you know what unconditional love is.

      Delete
    2. Oh yes I ' m sure she has never tried to teach him that its not ok to hurt .. repeatedly ... his whole life . Just like i havent tried to teach my son that its not ok for him to hurt mom .. for the last 18 years . Im guessing you dont have a child on the spectrum , or if you do .. you got one of those ' oodles of people on the spectrum that never physically assault anyone '. But thank you for your narrow - minded judgemental comments .. i ' ll just go back to enabling my son .

      Delete
    3. What in the post above makes you think for one moment that she is sitting complacently by while he hits her? What makes you think that she isn't doing safety holds or telling him it is not okay? Or working with him constantly to understand it isn't appropriate behavior? I'm sorry dear interweb expert on domestic violence what should she do? Should she LEAVE her son? Divorce him? Or abuse him?..I want your answers since you have them all. Report him to the police- seriously what is the BEST course of action. How do you sleep at night? If she is the victim of domestic violence you portray her to be how do you sleep by further attacking the victim?

      Do the world a favor and before spouting off opinions on which you have apparently very little authority educate yourself http://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5%28ASD.Guidelines%29Feb2013.pdf . You just may notice that developmental delays (meaning although a child may physically be 9 or 10 they may emotionally be much younger) and temper tantrums/behavior difficulties.

      Delete
    4. Hi Jane,

      I'm guessing from the tone of your response and the way you attacked me you're not really happy with your life.

      Yes, Morgan is quite large for his age, this is something we've taken into context as he's aged. However, FUCK YOU for bringing this into the conversation.

      All I've done as a parent, an autistic parent of an autistic child, is bring something to light that NEEDS to be discussed. By you comparing this to an abusive spouse with little to zero background information (by that, meaning I've released none), means that you are, in fact, a jack ass.

      I love my son. MY SON. Fruit of my loins and all that.

      He's worth me fighting for, you fucking bitch. So, in closing, fuck you for your suggestions that you know my life.

      Delete
    5. Hey Janee -
      Judgmental asshats are full of amazing advice, aren't they? You sound like you have all the answers!!! Like you know some magical formula that maybe us autism parents don't know. Do share! In the meantime, keep your ill-advised, craptastic, idiotic, rude, condescending, ignorant, lame, disgusting, ugly comments to yourself. This mom is not asking for your "advice," nor is she welcoming your stupid-ass commentary. You have no idea what you're talking about. And she's venting. And making herself vulnerable in the process, in the hopes that she can help a fellow parent feel less alone. I know this mom. I know that she loves her children fiercely, would do anything for them, and even though her life is overwhelming, would help a fellow parent in need. Even you, you jackass. She'd even stop and help you if you needed it. Raising a special needs child is NOT THE SAME THING AS BEING ABUSED BY A SPOUSE YOU IDIOT. SHUT THE HELL UP.

      Delete
    6. Janee where the fuck did she say she condones it? Rewards it? Thinks it's just dandy? No where. She is explaining what it is. To compare your child to a husband is ludicrous. She can get a new husband. You can't replace a child. So that comparison, that's got no place here. At all. This is a reality that some, not all, but some families deal with. As this post has been shared, liked and commented many times over on social media, it rings true for many families. No where did she imply it means all kids with autism. Also, every autism parent on earth is very much aware of their rapidly growing child. Pointing that out is hardly a news flash. She is a mom living this life and sharing her experiences. Troll elsewhere!

      Delete
    7. Congratulations, Janee. You are person number 3,422 (I could be off by a few, but probably not many) who has suggested to Jessi that her son's behaviors are all her fault. The very first person to wonder if Morgan's issues were Jessi's fault? Jessi herself (because that's how we moms of SN kids feel, almost universally). So, you may rest easy tonight in the knowledge that Jessi is more concerned for Morgan than you are. You know, her being his mom and all.

      Delete
    8. Janee,
      I don't even know where to start. Your comment smacks of ignorance and is downright cruel. My son has PTSD (from medical trauma), Autism, Perisylvian Syndrome and an alphabet soup of diagnoses. He has very little impulse control and often reacts physically when he is upset, in sensory overload, afraid and so on. I have 3 autistic kids, and am autistic myself. Sensory challenges are intense and executive functioning challenges can make communication challenging. I can become overwhelmed but I am 37 and my pre frontal cortex has developed to where I do not respond physically towards others.

      I am thankful that my kids are safe and feel comfortable letting it all out in my presence knowing they are loved unconditionally.

      How does this translate to condoning domestic violence? It's quite a leap. Try having some empathy, compassion. Try education. My son is 4 and neurologically/cognitively is about 1.5 Young children hit/bite/throw things in frustration. Older children experience sensory meltdowns and frustration. What would you recommend? Having them arrested? Your comment is in really poor taste, truly.

      I see a mom being honest. A mom who loves her son and supports him when he is struggling. A mom who hurts when her child struggles.

      Delete
    9. Janee....you asked how Jessi could sleep at night??? How can you sleep at night after your completly uncalled for bashing of a mom. A mom who is doing her very best. You should be ashamed of your comments. You are an absolutely a disgrace.

      Delete
    10. Janee, you sanctimonious twat. You don't know us. You don't know our children. You don't know what you're talking about. If you are interested in learning, then be quiet and listen. Otherwise, go back under your bridge.

      Delete
    11. Janee, Really?? that has to be the most IGNORANT comment I have EVER read in my whole entire life. judging by your comment, you don't know squat about autism, or what autism mommy's go through on a DAILY! until then sit down, shut up, and educate yourself! To compare an autistic child to an abusive husband is absurd!! SMH

      Delete
    12. Hmmm comparing a YOUNG child with developmental and neurological issues to a GROWN man who knows better....SURE SAME THING MORON! You obviously know nothing of Autism and obviously didn't read her blog correctly! She never said she condoned it or told him his behavior was ok! Im sure she rocked and calmed him before or after long dicussions of it not being ok!! I am a mother of 8 year old twin boys with Autism. I wouldnt say they are violent but they are proned to fits of rage. They have never hit me but they hit their Dad. And beleive me when I tell you we discuss and discourage this behavior. There are "oodles" of Autistic people that aren't violent? What does that have to do with Morgan? How does that help him?! He has problems and telling him thats not normal for Autism baffles me. NO TWO AUTISTIC PEOPLE ARE ALIKE!! Besides these are our children! What are we supposed to do? Divorce them? Put them up for adoption? Oh maybe we should beat them! That would just fix everything right?!! NO! We, in coordination with their teachers have to travel a LONG road of teaching them what is appropriate and what is not acceptable. A LOOOONG ROAD. A lesson that comes easily for most people has to be learned SEVERAL if not HUNDREDS of times for a child of Autism. Know all the facts before you just shoot your mouth off. She only expressed that it hurts her that he hits her. She didnt say how she deals with it. I'm sure thats a blog for another day. I'll tell you like I tell all the other ignorant assholes out there, come take our kids for a day and show me how its done! You'd be in tears and overwhelmed inside of 5 minutes. How about you offer some real solutions for her instead of attacking a struggling person brave enough to be honest. Kick us while we are down....sure thats always the high road.

      Delete
    13. I totally get what Janee and everyone else is saying. SN or NT there is teaching to be done. Name calling and bashing isn't educating or helping anyone. Until a person has taken a single step in the shoes of a SN child they really should tread lightly. Instead of name calling and cursing explain and educate. I don't know you or your family Jessica and this is the first time I've ever read your blog. I'm not a parent of a SN child. I have never stepped a foot in your shoes. I do know though just from this post that you are a passionate mom. Keep doing what you do and educate when possible. I was that person that would say to myself and others can't they shut that screaming kid up? If he was mine I would do this that or the other. Have you tried this? Have you tried that? It's parents like you that have changed that for me. I more patient, thoughtful, considerate, and loving because of parents just like you. Thank you for making me a better person. I admire your courage to share your life and give people like me a new outlook.

      Delete
    14. Michelle Amond YostFebruary 11, 2014 at 1:55 PM

      Not that no one else has said anything but Christ on a cracker!!!

      I love when people go ahead and attack YOU for being REAL. I don't suppose you've spent any time with your son in various therapies, working to change undesirable behaviors, I'm sure you give him ice cream to reward him for wanting a hug after hurting you.

      A CHILD with autism who is still learning and still growing and still trying to figure himself out VS a grown man with domestic abuse issues? HONESTLY. What an asinine comparison.

      Blaming parents is always a positive. It's super obvious that Jessi is a total hands off parent who doesn't continuously try to better her life, and her children's lives. So it's important that asshats come on and randomly compare things that do not compare and insult someone for writing the dirty truth.

      THIS is why people HIDE the TRUTHS of autism. Because of know it all people. As if we don't get it enough when we finally are brave enough to talk about all of it? Someone has to come over and piss on your face for it.

      So thanks Janee! Your assvice is TOTALLY appreciate by Jessi and all autism parents everywhere! None of us ever thought of ANY of those things.

      And where, oh WHERE did Jessi once say she was PROUD of his violence? Quite the opposite.

      Also? The thing "we autism mommies" get? Whether we have a kid who physically lashes out at other people, themselves, or no one? Is that we get the brunt of the toughness just like ANY parent. And just like ANY parent we take it and teach our children to be better. Lucky us our kids are more prone to behaviors that are harder to help them with and more dangerous than your regular ol' NT child.

      Oh the judgement. It feels SO GOOD!

      Delete
    15. Oh for heaven's sake. Janee was expressing her opinion (which you all want the right to do) in a public forum. You can all choose to ignore her, instead you jump on her - swearing and name calling. Here's the kicker - parents are not perfect. Not even special needs parents. And maybe Janee was not completely off base here. Also, since when do we have to care what anyone thinks anyway? Does Janee's post bother you so much that it's ruined your day? The minute we stop caring what anyone else thinks, the better off our lives will be. Do I agree with Janee? Who cares - maybe I do, maybe I don't. But she is entitled to her opinion.

      Delete
  6. Thank you for being brave enough to put this out there, where people are going to judge you and your Son, thank you for saying these things because you are not alone. I feel like I could have written this posting myself and no matter how hard we try as Mothers it still sucks, are we are good Mothers, if this was any other job I would have quit long ago, but you can not quit, you have to keep going for your son. I commend you for putting this out there and helping those of us in similar situations know that it is ok to have days where it sucks!!

    ReplyDelete
  7. Thank you as I have been the only one my son mets down for. I have been at a loss as to why he only does this for me. Bless your heart for writing this.

    ReplyDelete
  8. Hey Jessi! All asshats aside, I'm another one saying I totally get it. And thank you for writing about it. It IS lonely wondering if it's just you, and now we all know it isn't just us <3

    ReplyDelete
  9. Moe can be a very aggressive kid, and with very little language, it is hard to teach him that it is not okay. Sometimes he is so frustrated, that he doesn't know what else to do. It's tough on everyone.

    Oh, and Janee, if you'd like to come parent my kid for a while and see what it's really like, I'm sure you'd be the first to volunteer.

    ReplyDelete
  10. While I don't have an autistic child I do have the utmost respect for the families that do have them. I don't think I could mentally handle certain aspects as I suffer from my own issues that I barely control. If it weren't for families like yours things would just suck and these kids would have horrible life experiences. That is made evident by the woman who doesn't understand loving a child.

    ReplyDelete
  11. Wow. I'm just going to ignore Jane (and all the Janes in the world) and say I hope you find someone to hug and rock you and make you feel better when things get hard. (the rock you part sounded way wrong, but...well {blush}). I used to say that my daughter held in everything that bothered her during the day and let it loose when she got home. Everyone in the house is a target. We do our best, and every night before we go to sleep, that's what we need to tell ourselves. Love wins, Jessi. Love will always win and it sounds like you have a whole heaping full of it. ♥ God Bless

    ReplyDelete
  12. Jane,

    You know the difference between you and Jessi? After her son has lashed out, Jessi sees HIS sorrow and shame. She attends to the part of her son that will help him heal from his breakdown, so that she CAN teach him right from wrong. You are so concerned with discipline, judgement and comparison that you miss what's important. Restoration. Healing. Growth.

    You are hateful and mean. I don't know any person with autism that responds well to that, so maybe you should keep your mouth shut and lousy "advice" to yourself.

    This woman is strong, loving, intelligent and above all an INCREDIBLE mother who's sons adore her. No one can reach a son's heart like the mother he worships and trusts...and Jessi knows that.

    You have a lot to learn.

    ReplyDelete