This post is totally extemporaneous! There was no draft, theme nor great idea.
Yet here I am writing, undecided if I’ll even publish this! I guess if you’re reading this then I must have got adventures, that or damn right brave!
You see, right at this very moment I’m apprehensive, somewhat stressed, extremely exhausted and in all earnestness, a little angry. I therefore apologise in-advance for any rambling nonsense that makes no sense to you, like it does to me.
Right now I feel the need to express myself, yet I have this inability to verbalise what it is I need to say. Who it is I need to say it to is beyond me… So, I’ll just write it here instead!
These past few weeks have been crazy, I dunno where my heads at right now! One part of me has been excited about all the great stuff going on, what with the Mad blog awards and the achievement of having been shortlisted in two categories, “Most Inspiring” and the big one “Blogger of the year. Then there’s the fact I’m off to Cybermummy on the 25th thanks to the lovely people at lego duplo! The other part of me resembles that of a total stress head.
I know we all have weeks like these, the not so good ones, but I’m really struggling to get my mind frame as it should be!
Sometimes I read post and comments that relate to myself and the blog… Some write some awesome things, giving me credit for the way I parent and handle life’s challenges. Although these comments uplift me, encourage me and make me smile, I somehow feel a cheat for allowing such presumptions to be made.
Why? I’m no super-mummy, far from it! Sometimes I questions my ability to do this whole mothering lark, but don’t we all at some point? I know I’ve come a long way emotionally in these past few years, I’ve had to! Yet there are them times I feel like I’m running on a treadmill going faster and faster, so fast I can’t keep up. I keep going till suddenly someone presses the button and I fall of! When I’m off, I struggle to get back on.
People need to know the whole me, I’m human though sometimes I feel far from it. I make mistakes and sometimes I wish I had done things differently!
To think that a great deal of you find me and the blog inspiring means more to me then some will ever know. Days such as yesterday I fail to see myself in such a light, especially when I found myself absconding to the safety of my bedroom, closing the door behind me, sinking to the ground and sobbing like a baby! Take last week for an example… Having just attended another independent assessment (OT) with little man (not a great assessment) Little man become anxious when I took a couple of wrong turns getting us a tad lost! A stream of obscenities were thrown my way. They kept coming at me faster and each more shocking than the last… I was stood outside Loui Vuitton on New Bond Street, sobbing into my hands (and this wasn’t over my realisation that the beautiful Loui Vuitton oversized bag in the window would never be apart of my life, though this did make me a little sad) I should have been calming him, ignoring the shocked faces of the appalled public and as I normally would… Got on with it!
It takes a lot to get me on this level, things a lot worse have happened in-which I’ve dealt with in a calmer manner! You take so much, then that one thing just does it, makes you snap… no matter what the magnitude! These are the times I am overcome with guilt and question my ability to manage! I then feel selfish that its me I’m thinking about as opposed to him! Do you know how hard that is?
Wow, seriously I haven’t slept in nights, maybe that’s my reason for this, “I feel so sorry for myself post” Maybe this attempt of a post, will be one I regret! The post you wished you never wrote… We all have them… Don’t we?
I’m not to sure how this post is planning out, what it sounds like! I’ve not read a bit back nor corrected one-off those spelling mistakes I see as its been so kindly underlined in red (cheers Mac) I’m In a zone… and for all I know this could sound like complete and utter, “Shit!” I feel a certain amount of pressure removed from my head, does that mean I’m almost done? All these worries I have manifesting together as to create one huge headache have been difficult to shift. I have struggled to partition each into its own place dealing with each issue one at a time… In actual fact… I feel close to crazy!
Little man has had a grand total of nine explosive meltdowns in a little under a two-week period. These have impacted on the whole family, each one off us getting to grips with it as best we can. Meltdowns have been had for an array of reasons, such as… Stressful OT assessment; the issue of me getting lost on the monopoly board; a line failure on the jubilee line; a broken down bus; late school transport and complete lack of sleep.
These issues may well seem trivial to some, but to little man they are real everyday factors that cause him distress. Can you imagine how hard that must be, the loss all control, the struggle to self regulate your emotions… I wish people would consider such things when staring, judging or worse laughing, this only makes him worse. (Yes, sadly some find it amusing!)
As well as the meltdowns I’m unhappy to report a more worrisome issue! Given Little man’s anxiety and his inability to get much sleep has unfortunately lead to two panic attack. I felt both helpless and guilty at not being able to keep him safe from such horrible attacks. Both occurred in the small hours and when he begged for an ambulance, I almost complied! Being a person who has suffered from these attacks from a very young child… I was able to distinguish between a medical emergency and anxiety. He felt at ten years old like he was having a heart attack as electric had entered his body and was unable to get out. (It hadn’t bless him.) He paces, opened doors and windows in a desperate attempt to breathe … It took some time but we got through them together!
Sleeping like a baby, I looked at my child laid on my bed now so peaceful. I wondered what I needed to do next? What does the foreseeable future hold for my child? I slide down the bed to the floor cried, not just a bit but more tears than I knew possible… I felt so lost a feeling I haven’t felt for such a long time! I was worried what tomorrow would bring, would he endure the same thing?
Right now I hated the big man In the sky, for my son is just a child, why can’t he be left alone!
A boy with Asperger's 
Oh Claire I hope you are feeling much better. Your a star and I love you and your motivation.x
This is a post that explains how I often feel. You are a star claire. I hope you feel better soon.xx
I am thinking that as parents of these wonderful and challenging boys, it usually benefits us to be so very strong and in control of ourselves. We also work hard to control the environment for our guys: to help regulate the way the world comes at them so unevenly, and we are there to help mitigate their response.
We work out difficulties we encounter with that way of researching, learning more, advocating, making another call, another connection, another decision, another plan to make things better… Most of the time our amazing strength, our focus, intelligence, drive, work ethic, and extreme self-control help us make it through the day.
It is hard to shut off that way of reining in and controlling the world because for us it is a survival technique. Unfortunately this doesn’t help a lick when dealing with grief or our own stress overload…
Let your tears come…
Reflections old and new…
http://30daysofautism.wordpress.com/2011/05/13/let-the-tears-come-dealing-with-grief-and-letting-go/
PS Post like this make you deserve to WIN in the MADS. Good luck!!
x
Oh my Claire, my child does not have autism and I have days, when I have to leave the room and sit on bed and breath.. and my life is SO MUCH EASIER than yours. You may not feel like you are coping, but from where I am sitting you look like you are doing a pretty amazing job.
I hope that this low passes quickly, that things settled for all of you and you all get to have a good nights sleep (my how much better the world looks when you have slept) and that you all feel better soon and that you feel proud of your achievements again.
I don’t know what else to say.
Maggy x
Claire, you are a mother, and a very good one, but you are also a person. Sometimes you do need to live a bit for yourself too. And you can’t “smother “your son. Pretty soon he won’t want that anyway; when he gets a little older then probably like most boys he will want to find his own individuality and you must allow him to have it.
You must try to treat him as much as you can as a normal person because that is how we want to be treated. We just don’t want to be unfairly rejected from things.
The meltdowns he has is part of OCD which is something I know a LOT about.
By the way you are one of the people very high on my list of those I would like to meet and so I really hope it does happen next week as planned.
Thank you so much for this post. You are not going mad, we all have our limits and some days we reach them. I am a strong woman with my own business and two kids who makes decisions everyday.
I ad my own particular tears streaming down face public moment stood in a famous eyewear store when I couldn’t decide which frames I wanted for my extra pair free.
The simpleness of the task made it all worse. One minute I was laughing at myself the next crying much to my kids distress. My son thought my eyes were sore and that’s why we were in the shop:)
We don’t choose the moment to feel vulnerable.
I think we have all felt like you and you definitely don’t come across as crazy. A big thing that helped me was doing a parents course which made me realise just how their minds work and that they can’t help the things they do. But it is completely exhausting and all you want is for them to be relaxed and happy and for you not to have to deal with situation after situation. If you can get the school and the supports behind you you will no longer feel like it’s all down to you. We were so lucky this year that the support teacher agreed to help my son with his homework. It transformed our lives and cut out so much stress. I hope in the near future that your son’s school etc situation will have a knock on positive effect for you. As you say, everything is much worse when you are tired. You are probably exhausted after all the battles you have fought with the school this year and it’s all catching up on you. You just need time to rest.
I’ve had days like these where It is just too hard to handle one more meltdown! You are not alone. hugs.
You’re just human like the rest of us. Being a parent is a struggle at the best of times but for those of us who have children with special needs it’s so much more so. My boy’s 33 now and believe me, I’ve been through every emotion in the book, time and time again. I’ve got from absolute elation when he’s achieved something I never thought would happen to wanting to end it all because I was so damned tired and just didn’t know how to cope anymore.
From what I’ve read on your blog, you’re a great mum who does everything that could be expected and more.
Hugs x
Thank you for sharing such intimate thoughts. We have all been there, and it is a comfort to know that there are people out there who understand (even if in the wee hours, it seems like you are all alone). Very brave entry!
Dear mom,
You are normal! You need to express how you feel to make you feel better. Everyone tells me I’m a great mom and I never feel like I can hold that title! Just know when you have good days, you need to focus on the positive. There are respite locations in Toronto…are there any near you? If so…go! There are people there who can relate, you can vent and feel like you are not alone. Meltdowns are the worst. With my DS he is on Ritalin which really helps with the meltdowns. He takes Melatonin 2 hrs before he should be sleeping. YOU need your rest to cope. Without rest, you will feel this way. Take a deep breath and remember that its all worth it in the end. You are doing everything you can. (More than I can say for most of us). You inspire me to go on and now its time for me to inspire you! You ARE a good mom! You are helping your son and others. Know that what you do IS of value. You might need a well needed day off. Is there anyone who will take him for a few hours? Get a massage, read a book, take a bath, take a walk. Breathe. You do make a difference. Know that!
We all have days and weeks like these. It is totally natural to sometimes feel so overwhelmed by everything, the enormity of it, the difficulty faced by our child. It is so unfair and we cope and cope and then……we can’t. And it is important that once in a while YOU are the one that has a meltdown, YOU are the one that doesn’t cope for just a little while, because if you just coped all the time then eventually you would have a complete breakdown. Better a little one now and then (although it doesn’t feel little at the time) and be able to cope for the next weeks or months until the next time you get there, than to carry on through and cope and cope and then have a total nervous breakdown and end up in a place where you can’t help anyone at all!
You are human. You do your best. That is all anyone can ask. And just because you find it difficult at times doesn’t make you a failure. Or me, or any of us mums with our own little men with AS.
Have a good cry today and in a day or two you will feel better and wonder what all the fuss was about. But never, ever feel guilty about a natural reaction to constant, ongoing stress. xx
You’re not a failure but just a mum who is trying her very best for her boy. It’s heartbreaking when you see your baby like that and I know I’ve got the t-shirt too. The majority of people don’t know what it’s like to have a child with Aspergers and even with all the goodwill in the world will never understand. Be kind to yourself and love yourself x
Thank you for sharing I’ve had a really hard year my son Is in second class he’s 8 soon and my biggest struggle is how ridged his teacher is this year having him repeat homework from the day before with no explanation as to why, and it’s already nearly impossible to do the normal amount of homework, I think teaching is a vocation and this teacher if you ask me is in the wrong job she lacks understanding and compassion and expects miracles from my son. I pray that his next teacher knows how to teach and has more experience with children on the spectrum:( please god next school year will be better