Today I had to complete a task that I absolutely hated doing. I had to sit down and write out all the areas that we struggle with our Harley so I can take them to his appointment with his new psychologist on Wednesday. I had to fill in forms and provide all the applicable paperwork and this all took me quite a few hours.
Now I know that there are a lot of issues with Harley that need work, but until I took the time to actually sit down and write them all out, I had managed to convince myself that things weren’t really all that bad after all.
But they are. The list is loooooong.
I listed everything from his defiance, aggression and anger through to his OCD quirks and sleeping issues. And as I sat there and read the list back to myself I was confronted with a fact that I have been avoiding for quite a while: The fact that our entire family revolves around this child.
It seems that every argument that has ever occurred in this house has been somehow tied to him whether directly or indirectly. He is always angry and out-of-sorts, he is volatile, he is hard to please and he is extremely vocal when he’s unhappy. I find myself often avoiding disciplining him firmly enough because it’s just too hard having him scream at me and attack me physically.
Paul and I realised over the weekend that the reason we never go anywhere as a family is because it’s either too hard to deal with his tantrums in public or too hard to deal with the aftermath once we return home again. And I no longer think that this is solely related to his autism because we don’t have the same issues with Lucas at all. I’ve always referred to them in blogs as ”the boys’ instead of pointing out that most of the time, it is Harley who makes me want to tear my hair out. Because that seems unfair to do. But sadly, it’s the truth.
And its not like we haven’t tried to go out. If we do happen to mention to the kids that we’re going to the shops for a few items, Lucas simply says “Ok” but Harley starts screaming and eventually Lucas joins in. Lucas constantly copies his brother and the thought of having two of them this explosive frightens the heck outta me.
So that’s why we have to deal with Harley’s anger before that happens.
Most of the times that we do actually go out and then end up staying somewhere too long (in his opinion), the moaning, hitting and yelling starts. So more often than not we opt to just stay home because it’s the easiest option.
Which would be ok if it didn’t bother us to stay home. But it does, because very soon after a failed attempt at an excursion – the resentment sets in and I find myself becoming angry because I feel that I have no life whatsoever and I end up in a foul mood because I’m sick of being so house bound.
I know that choosing to become a parent involves hanging up your selfish hat and putting your kids before you, but this is ridiculous. There has to be a bit of give and take not just take,take,take,take all the time.
Paul and I both hate weekends. And Lucas and Ella have also vocalized that they don’t like them very much either. Ella often sits with her head in her hands when Harley is escalating and unfortunately Lucas regularly cops the brunt of a lot of Harley’s anger. He is constantly being punched, hit and kicked.
Which is why I’m pleased that we have this appointment approaching because it turns out that the OCD is only the tip of the ice-berg with Harley. And whilst it sure would be good to hand him over and have him returned to us completely fixed, we know that it’s not going to happen and there is a long haul ahead of us.
But herein lies my greatest concern. It is bothering me that in order to give the psychologist all the necessary information to help Harley, I will have to paint a pretty nasty picture of my little boy. Much like I have here but the difference is that all of you who are reading this know from previous posts that I would do anything for my precious little boy and I adore him, whereas I have to meet her under very different circumstances.
But I have to present worst case scenario right? My boy IS worth it , he is extremely valuable to this family and he deserves all the help that we can get him.
And that’s what I will continue to tell myself until I stop feeling like such a cad.
I totally get what you’re saying in this post. In order for Toby to be diagnosed, to get that help we and he needed to move on to becoming a more functioning and happy child, we had to let the doctors know the worst. Because that is what needs to be addressed in order to start the healing and growing path. The worst, so he can become his best
You nailed it: Show the worst to help him become his best. Thank you for that! it’s a real encouragement!
I wish I had your honesty!! But you are so right, in order to get the help needed we have to be brutal and paint them in the worst light, as sometimes this is how they are! Thankfully, over time whoever is treating our precious beautiful boys will get to know them and know that they are not all tantrums and abuse, but wonderful human beings who are frustrated because they don’t work the way everyone else does!! Good luck with the new psychologist and I hope she is the brilliant wonderful one that can give you some relief and some options!! In our prayers always! xoxoxox
LOL, I LOVE “JollyJody” Cos that’s exactly what you are my dear!
Yep. Our boys are beautiful souls and it’s all for the best….deep breaths…
Reblogged this on ImaWestie and commented:
All parents find joy in shouting from the rooftops about all the things their children can do.
But none of that gets either you, or your child, any help at all in this needs focussed society we live in. Pointing out what our children cannot do is an anathema.
This is sure to be yet another absolutely fantastic post by Fi. Fi, who leaves no emotion unexposed, who tells us the bright and shiny, and the dark and scary.
Awww, Thanks Westie! What an honour!
Great posts deserve reblogging!
Your love for Harley will shine through to this psychologist (and if it doesn’t then they’re a dolt and I say RUN) through every pore of your being. For making the appointment, for not only filling out hours of paperwork, but openly and honestly providing gut-wrenching answers so that he can get help, that my dear is a great act of love that cannot be missed. Think of all the kids who do not get such opportunities for help because they did not have an adult who could or would climb such high mountains on their behalf. Your actions SCREAM “I love my child so damned much.” Even though I occasionally consider throwing him off that mountain!
Frustration is real. Being tired is real and so is the strength to overcome them and push on as you are doing. And one day, a more peaceful home will be real as well.
I will be thinking of you and sending positive thoughts your way.
Charlotte
hehehe *dolt* You’re funny Charlotte
Yep…it’s the frustration that’s getting to me the most these days. But yeah, you’re right – I do need to push past the discomfort to provide him with what he needs
“The worst, so he can become his best” as westybec says, is EXACTLY what you – on behalf of you and your family – need to present to the psychologist. For the WHOLE FAMILY you have to be as honest as possible about the behaviours that present as problematic and those that you aren’t really sure of… In a sense what you have is an opportunity to present the psychologist with what amounts to “cctv footage” of Harley’s behaviours, but in words. You will always guard his integrity. Your love will shine through. Be as honest as you can possibly be. The more information you provide and the clearer the picture of Harley you present, the better equipped the psychologist will be to provide a helpful, hopeful set of possibilities and outcomes from the consultation. Thanks for your openness and honesty in this blog. You are remarkable. Love and hugs.
Yep. It is the whole family that needs him to have this help. I like the idea of referring to it as presenting CCTV footage because that’s exactly what it is!
Thank you for your continual encouragement, xx HUGS xx
I should not have hit the “like” button. I like your honesty but I understand how difficult this is to write. How much the sacrifices affect us. What you are doing should not give you guilt – you are seeking help for someone you love with every bit of your heart. This cannot be the first time the psych will have heard this set of facts. All you are doing is your best to improve everyone’s day to day and that is all good. It is the beginning. I hope it goes very well for all of you.
Thanks Karen, it certainly is an encouragement knowing that The Psych would have heard stuff like this before. It kinda makes us feel more “normal” LOL
You have to show them at their worst day and that is so hard to face in writing. I cried for a week when I had to fill in *CAL’s DLA papers. I cried for a week again with the forms for her first Psychologist. I didn’t want to see all the areas she struggles in, I still don’t but to get her the support to learn all the things I am still learning for myself I will always push through. The pain and sense of failure I feel for not being able to do the things she needs practise doing was so in my face when I saw it written down. I know how much you love all your kids. I know you will always do what is best for them.
Will keep *Harley’s appointment in my prayers.
Love you all so very much.
Lees. Xxxx
Thanks Lees, I know you will keep us in prayer and I can’t thank you enough for that
Yes, my son is like your Harley alright. His asperger has fully blown up that he is now in a half-way house, healing, being cared for and given some medicines which, in his case, he badly needs.
And the days after his confinement, there lies an eerie silence, which surprisingly, gets too much to bear. I would suppose we would have sound sleep and peaceful fearless time at last around the house, as there is no more foul language and violent outbursts both verbal and physical to us and to the things around the house, there lies that silence which aptly says my son is gone. Will be gone for some time. His father who is instrumental in his development does not have an open mind and continues to negate whatever the doctors says his son has and needs. And continues to ignore and stay indifferent towards me.
God bless us and He knows what every mom is going through. He will see us through this.
I’ll keep praying for you and your son, I know how much you love him and want the best for him even though it is often a huge struggle for you xxx
You are doing the right thing. You are a good mum! You love your little Harley and that means that sometimes you will have to do difficult things. This is one of the more difficult things but if all goes well, it will be so very much worth it for everyone, especially Harley who is suffering greatly along with everyone else.
I wanted to mention: you say that you “no longer think that this is solely related to his autism because we don’t have the same issues with Lucas at all.” Don’t be too sure. First off, everyone with autism is different — yes, we all have the same brain structures but we are also individual people who respond to things differently and have different levels of sensory issues and so forth. Lucas shuts down; Harley melts down. Different triggers, different coping mechanisms.
I have mentioned before that I identify most with your Harley. I melt down, too. Yes, even now at age 45. I hate it, it’s humiliating and embarassing. I wish I didn’t. The only way I know to control it is to not put myself in situations that cause it. Once a meltdown is started, I can’t stop it. It’s as if I’m outside myself. I have no control over myself. I bang my head against the wall. I run out into traffic. I scare the life out of people around me.
Because I understand the consequences, I do everything I can to avoid it. I have walked out of the grocery store leaving behind a cart of food. I have gone without food at home because I knew I couldn’t leave the house without risking a meltdown and thus risking jail or worse. I have skipped classes (and still managed to have several meltdowns on campus, much to my chagrin.) My boyfriend has learned to take it seriously when I say I am getting stressed and need to slow down. He used to fear that it meant there would be topics of discussion that were off-limits but he’s gotten to know me well enough to realize that it’s not the *topic* that sends me into meltdown, it’s the surrounding stress, sensory overload, etc. and no topic is actually off-limits, just some times *any* stressful topic has to wait.
I am rooting for Harley and really hope that there are therapies or meds or techniques or a combo of the above that help him to not go so ballistic all the time. I know, personally, how very very very horrible it is to live a life like Harley’s because that’s what MY life is like and so I’m really hoping that you are able to get him some help. But there is also the real and sobering possibility that the only help available for him is to limit his life the way I have to limit mine in order to maintain control.
My life isn’t TOO limited, mind you. I do go to school — I’m getting close to finishing a doctorate, in fact! I have friends online and warm acquaintances offline and I sometimes go to play music with others. I sometimes go for hikes. I somteimes go roller skating at the rink. Most of the time I have no problem in the grocery (but I fall back on a repetitive diet quite naturally and that helps keep grocery trips very short. I couldn’t bear to be inside the grocery for 30 minute or more!) Most of the time I have no problem getting my basic needs met. But I had to learn where my stress levels are and how to recognize that “enough is enough” and back off until things cool down. I can’t go to malls for more than about 15 minutes at a time. I can’t go to more than 2 or 3 shops in one day. I have to be very choosy if I go to a restaurant or coffee house as far as what time and day and place I choose to go to. I’m very easily overloaded and I lose all self-control when that happens.
And it’s just my autism. My autism and my sensory sensitivities (I’m not just sensitive to light and sound and smells but also to motion and lots of people milling around or lots of children running here and there break down my self-control VERY fast!) I am constantly engaged in self-regulation when outside the apartment and I far prefer to just stay at home, alone, all the time. And even that was no picnic for me when I still had my husband because I NEVER got to be alone, ever, at all. So I was CONSTANTLY stressed and constantly melting down and had no place safe and quiet and mine. I honestly don’t know if I CAN live with another person or people. It just may be that my nervous system is too tightly strung to allow me to have a close relationship or family. It’s really hard. Having autism is really, really difficult for me.
So …. I don’t know if I’ve ever bared my soul to you (and everyone else reading) quite this much before, Fi, but now I think you can see why it is that I say that I love your whole family, I love all your children, I adore reading what you write, I feel so connected to your family in ways that don’t make sense considering you’re halfway around the planet and we’ve never met . . . but I ESPECIALLY love your little Harley because every time I read what you write about him, I can so strongly feel the pain because it is the pain I live with, too. He is so much like me. I really feel I understand him and I do suffer alongside him and your whole family and I root for him so strongly.
(I should also add that I’m eagerly watching to see if the new professional is able to help! Because anything that works to help him is something I will be wanting to try for myself as well! While I’m primarily just rooting for him and hoping he finds some relieve, I confess that there is a selfish side to me that wants him to find relief so that I have a new arrow pointing at something I could try to help make my own life more manageable as well.)
So…. I’ve written a whole book here. Sorry about that. Just know that my heart is with you and all your family. And that you ARE an amazing mum and I’m so happy that you’re trying something new and still seeking answers for Harley. Never, ever give up! Not that I think you ever will. You’re made of pretty solid stuff, Fi. *hug*
You have always been such an encouragement to me Sparrow and for that I thank you!! I look at you and your life and what you have achieved even though at times it’s so difficult for you because (as you put it) of your autism. But you give me hope. Hope that there is a really bright future ahead for my boys and you affirm me by cheering me from the sidelines.
I’m so sorry to read how incredibly difficult things have been for you lately and reading between the lines…I’m so sorry for your loss : ( I am also hoping that this new psych will work wonders with my precious little guy. I’ll keep you in the loop : )
Thanks for the Hug : ) Here’s one back (( )).
I’m glad you understand, Fi! You got exactly what I was getting at — even if Harley ends up going from being a kid prone to meltdowns to an adult prone to meltdowns, it’s not a failure and he can still have a rich, full life. It will look different from the lives neurotypicals have, but it can still be a rich, happy life with academic and career success and happy interactions with a close circle of people.
And thank you for your condolences. I don’t feel like saying much about that — you know we all saw it coming. Some things in my life are harder now but other things are easier. Maybe it balances out.
I saw your other post: today’s the day! I’m rooting for you all!!
I’m quite familiar with those forms and when I say I know exactly how you feel..I truly mean it. Therapy and treatment can be a very stressful process. However, I promise you, if you’ve found the right psychologist that you’re comfortable with (and more importantly, one Harley is comfortable with) everything will slowly start to work out. You’ll know if the therapist is the right one almost instantly. It’s your “Mommy instinct” that will let you know. I know it seems so terrible right now but that’s because you are at the beginning of healing.
It’s always difficult at the start. Take solace in knowing you are doing the RIGHT thing, though. My heart continues to go out to you, Fi. For your strength and courage. Asperger’s & OCD combined could very well be what’s causing a lot of his frustration and anger. Again, you are doing the right thing by him, though. I truly hope you and your family could find some peace soon. In the meantime, I’d like to share something with you. Motherhood inspires me quite a bit & I want you to know I thought of you along with a bunch of my other Mommy readers when I wrote this: Letter to All the MommiesIt wound up being one of my most popular posts. I hope it makes you smile & takes some of the stress off of your mind. You truly deserve it.
I’m kinda counting on my Mummy instinct to kick in for me
And thank you for you encouragement…I’m off to go check out your post now
Every child has a side that we like to think they don’t have. Regardless of how bad it is, regardless of how often it comes out, it is always there. And in situations we sometimes have to let it be said that in fact our children are not the angels we like to paint up for other people. That they have tantrums, they have meltdowns, they hit, the kick, they destroy, they argue, and they demand. Whatever ugly side it may be every child big or small has it. And in cases regarding children with O.C.D, Autism, or another disorder it is a lot more frequent that we have to admit that our children have these ugly sides. The violence, the repetitive behavior, the tantrums and screaming, whatever it may be. And although it is hard for us to admit to ourselves that our children have these ugly sides it is vitally important for a parent of any child to admit to these sides. Not only for us to be aware and to correct them (if we can), but also for those trying to help (Early education, psychologists, etc) to be able to understand them. So through the struggle of having to bring all of these behaviors to light just know that it is truly what is best for your son. Stand up tall knowing that with this list of things he does, behaviors that he struggles through, and ways your family struggles with him that in the end there will be aid to better these behaviors. And know that one day, even if they’re all not corrected, that he and your family will be better off with some guidance in how to avoid some major behavioral upsets. Stay strong, Mamma, you and your family can do this!!
This hits so close to home…but yes, you have to get it all out. You are doing the right thing. I’ll be praying for peace for you. And I mean that with all my heart.