Do you ever feel so weighed down that you want to stay in bed, pull the covers up over your head and go to sleep for days on end? That’s how I’ve been feeling lately. No spring in my step, no fancy in my footwork, no zing in my zippety-doo-dah. Not even a single Mo in my Jo.
You would think that with a lovely sunny day and daffodils in full bloom that I would be in a better frame of mind. But I’m not. This isn’t for sympathy. I just want to be happy.
When I started writing on my blog one of the first things I wanted to do was to try to help others understand what it is like living with Asperger’s Syndrome from both my daughter’s and my personal experiences.
This time last year she/we lurched from one crisis to another but the help that I frantically sought for her was, at best, wholly inadequate, at worst, damaging. My daughter suffered shutdowns which rendered her unable to leave her room for days on end. For her, it was destructive and dangerous. For me, it was hell.
When she was diagnosed in the June of 2011 I thought, hallelujah, now we can get help. Wrong, wrong, wrong. For the next two years, my daughter was failed miserably by those who we trusted to give the proper support. Discharged from the Asperger team for some unaccountable reason, she was assigned a social worker from the mental health department who made it clear he thought he could ‘fix’ her by talking to her.
An STR (Support, Time & Recovery) worker was sent to our home weekly for six weeks to ‘help’ my daughter with her severe social anxiety. This consisted of the STR worker reading to my daughter from a script about the cavemen and the fight or flight response. Much like a kindergarten teacher would read to a five year old.
My daughter, her thought processes overwhelming her such was her anger and humiliation but unable to express this vocally, retreated into non-communicative, silent-rage mode. She was depressed for days after.
When I asked the worker if she knew anything at all about Asperger’s Syndrome she said that she had once read a novel about it. When I took this up with my daughter’s social worker he, of course, defended his co-worker and accused me of shouting at him, threatening to put the phone down on me. I wasn’t and he didn’t.
All we wanted was for my daughter to be able to gain access to the proper channels providing resources and support, enabling her to move towards a more independent and personally fulfilling life. Just as any mother wants for all her children. She relies on me for everything and as her mum, of course I’m happy to provide this for her, we are a happy little family, a great team, but for her sake she needs to find her own way eventually.
To this end, as I battled my way on her behalf through the horrors of last year I was at last heard by the manager of the mental health department who helped me ‘fire’ the social worker and find a new, much improved one.
I also secured the referral back to the Asperger team that I had been asking for for six months and since the end of last August things have been steadily improving, with other more positive developments along the way. Baby steps but it’s better than crawling backwards.
I also have to make sure that my daughter’s medical needs are met. She hasn’t been well for a little while now and recent tests showed that she is severely deficient in Vitamin D. This doesn’t surprise me because she rarely goes outside (Vitamin D is known as ‘the sunshine vitamin’ because we need the sun on our skin to make it). Now she has to take supplements and I’m glad it was picked up but of course I’m concerned as to how long she may have had this.
So why share all this here, now? After all, despite all that has gone on before, there is much to be hopeful and optimistic about. I am not one to give up easily and I will never give up on my daughter. Yet, as I fight on I am left, today, yesterday, and many days before that in a very heavy state of mind.
The thing is I don’t ask for help when I need it. I do the one thing they say not to do; I withdraw from people. At such times I find it very difficult to keep in touch. Why? Because who wants to hear me drone on, really? Hubby listens but a man can only take so much…
But I want to forget about things. A couple of large glasses of wine while watching back-to-back episodes of The Walking Dead of an evening is a great fix but in the morning nothing has changed. Except that I’m the one feeling like a zombie.
When I tell my friends that I can’t face going out in a group, secretly I really want to. I want to feel energised, uplifted, cheered. I want to join in the gossip, the laughter, be involved and hear about their lives. But I keep away, silent in my sadness.
Then, when I hear from someone out of the blue it means the world. Nothing like hearing from a friend who asks, ‘How are you?’ and means it. Such a friend doesn’t roll their eyes and think, ‘Oh no, what now?’ if I reply, ‘Actually, now that you ask, I’m far from okay’.
I don’t want suggestions or advice or anything. Just that knowing smile and maybe even a hug to say, ‘I’m here for you, now let’s go out and have some fun!’
That’s all.
I found the real me, the one I know that’s still there, in this clip. And one day it’ll be Aspie D too. It might take a few beers but I’m confident she’ll do it. So c’mon. Let’s dance and be happy 🙂
‘A cheerful disposition is good for your health; gloom and doom leaves you bone-tired.’ Proverbs 17:22
A View From My Summerhouse 
I can definitely relate Sherri, last Sunday was one of those days for me. And I did proceed to stay in bed until I forced myself to get up around noon. Isn’t it funny how much a call from a friend or relative that cares can mean? Even when I trick myself into thinking that I want to be alone, a simple smile or hug always does make the difference. Also, that song by Pharrell is one of my latest favorites- it’s so infectious you can’t help but feel happy! 🙂
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Oh Heather, I’m finally getting back to you and everyone here. I’m so sorry to read that you can relate, but also that you know what it means to have a friend or a relative contact you to help you get ‘out of bed’. And yes, isn’t this such a great song? I listen to it on my iPod all the time, it’s so infectious and if this doesn’t clear away the blues then I don’t know what will! I hope that you had a lovely weekend and that you are happy and I’m sending you a hug and a smile right now … 🙂
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here is the video snippet of the guy wearing the unicorn head mask to the Pharrell song:
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You have come such a long way and bourne so much on your journey that it’s not surprising you are feeling low on fuel.
You are deserving of change and due refreshing in your life.
Your best years (and friends) are yet to come and you will emerge into the sunshine (even on rainy days) ! !
I know it.
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Refreshment from the love and support of wonderful friends and family, here and off-blog. Thank you so much CM xo
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Sending big hugs your way, Sherri! I think we all have days or even weeks like you described. For me, the best solution has been to get moving. Living with a chronic disease has taught me to appreciate every day that I can get out of bed and live life. Hang in there, my friend, you’ll get out of this funk. If I had your phone number, I would call you right now! 🙂 Enjoy your weekend! xo
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Oh Jill, I’m finally ‘making my way back to you now’ as the song goes and thank you so much, I’ve been feeling your hugs all weekend long as I knew you were sending them, and even that phone call too, you are a sweetheart 🙂 You are so right about keeping moving, for me walking is the cure. It is vital isn’t it? But JIll, I am so sorry to hear that you live with a chronic disease 😦 I wish I could take it all away but your amazing positive attitude and the way you live your life is truly inspiring to me my dear friend. As you know from this morning’s post, I did have a lovely weekend and feeling much better, ready to get back on track again. I hope you did too and I’m heading your way shortly to catch up with you… 🙂 xo
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More hugs coming your way from me too. Enjoy the weekend. IT’s starting to get warm as well as sunny so I hope you find peace in the wonderful countryside around where you live.
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Ahh, thanks so much Dylan, you are very kind I’m really feeling those hugs 🙂 The weather this weekend was glorious wasn’t it? I hope you had a lovely sunny weekend in Suffolk and yes, we did indeed enjoy the countryside 🙂
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Oh Sherri, I can relate to his in some ways. You stay strong, I know you can do it. Always remember those blue skies!! We are being treated to a few at the moment 🙂 Let the sun give you a hug, and take it a day a time.
All the best, my friend! Never let a smile be too far away. A simple smile can do an awful lot of healing.
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Ahh Jenny Jen Jen, yes, blue skies indeed and didn’t we have a few of those this weekend? A simple smile, yes, and I see one now on that beautiful face of yours smiling right back at me, thank you so much my friend and I hope that the weekend was good to you too 🙂
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Hugs from me Sherri, keep smiling… Easy for me to say because I am naturally a positive person, thank the happy star that I was born under….. But good to hear that things are starting to improve for you daughter and for you. Xx
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Thanks so much Sue, I’m feeling your hugs and they help such a lot 🙂
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🙂
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To you from me and Bob Marley “No Woman, No Cry”
Everything is gonna be alright
Jude xx
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Love this Jude, thank you so much my friend. Everything is gonna be alright, yes, and I’ll think of this every day. Hope you had a super weekend with lots of lovely sunshine! Certainly lifted my spirits 🙂 xx
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Nothing like a blue sky and sunshine to lift the spirits – that’s why people living in warmer climes always seem friendlier I think. Unfortunately I was bitten by the technology sprite (not on my laptop this time thank goodness) and spent most of the weekend trying to get to the bottom of it. Never mind, I still had the windows open to let the sun shine in 🙂
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Oh no!!! What a pain, do hope you got rid of that pesky sprite…but glad it isn’t your laptop at least…and you had your windows open which is a good sign 🙂
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Very difficult to close them again though – they are oak and have swollen with all the rain!
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Ooops…we haven’t had any rain down here today for once… 😉
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My dear friend, sometimes holding it all together finally takes its toll and all the energy expended is simply gone. It’s time to allow yourself a good cry, time to recover and be filled up again. Prayers for recovery, energy and joy coming your way. Along with lots of hugs. ((( \ o / )))
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Oh Susan, you are so right, this is just what happens from time to time. I reach melting point and become mentally and physically exhausted. Just what happened last week after a relentless time of one thing after another. I’m feeling your prayers, thank you so much, and also for your lovely email which I’ll reply to shortly. Can’t say enough what that means to me. Got your lovely, warm hugs too. Bless you my dear friend 🙂 x
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When I feel as you do, I just cannot stand to hear people say, “cheer-up.” Well, if I could, I would, right? I understand what you are going through and I have no advice to give you that will make it all better. I think we all have to find that ourselves, because it is different for everyone. My wish for you is sunny days ahead and supportive people around you.
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Dear Bev, dear friend, you being here is what counts. You are so supportive and kind, thank you so much. We did indeed have a ‘sunny’ weekend, and time spent with family, which is always a wonderful cure. I hope that your days are filled with sunshine too and that you always get the love and support you need during your difficult days… 🙂
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I know the feeling but am lucky not to experience it for a while. When I wish the world would go away, I know it’s because I’m overwhelmed over SOMEthing, someHOW. Maybe some more music like you posted here will finally break through the gloom? Hope the weekend gives you a lift. 🙂
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I’m glad you don’t, It’s not good. Let’s hope neither of us experience it for a LONG time. You are right though, sometimes I just get overwhelmed and mentally and physically exhausted. Still, we had a lovely sunny weekend as you know and yes, I did indeed plug in and listen to some upbeat music. It is great isn’t it? Tess, my friend, you always make me smile and for that I thank you so very much 🙂
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Your smile is gorgeous. I smile when you do. 🙂
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Awwww………you are such a sweetheart Tess. You better be smiling then ‘cos I’m REALLY smiling now… 🙂 🙂 🙂
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I can hear the smile in your words. 😀 😀 😀
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Fantastic 🙂 🙂 🙂 😉
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😀 x 10 Ha!
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You’ve got me Tess (or have you?) 🙂 x 20 – tee-hee 😉
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🙂 x 100. I win. The game’s over!
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Okay, I concede – game over, you win 😉
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😎
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You know Sherri – you are allowed to feel like that from time to time. Being a parent doesn’t ever end, even when they are grown up and independent Mum is always a constant. It’s tiring, it’s often thankless and it never, never ends. Don’t beat yourself up about it, you will be fine but be fine on your own terms and not because you need to be in your parental role. You’ll do a better job of it in the long run – just as you have been doing and have always done. The weather this weekend is set to be sunny – take yourself off somewhere and sit and let the spring warmth in. And don’t rush it.
Wishing you all the best xxxx
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Oh Jenny, you are a lovely friend and you always make me smile 🙂 You are so right, being a mum never ends, no matter how old our children are and sometimes I find it so difficult when my daughter can’t do the things she so much wants to do. Although, as I said in this post, good things are happening and so I hold on to the positive and the steps we are taking one day at a time. And yes, I do need to stop beating myself up – one of my many failings 😉
Wasn’t the weather glorious this weekend? Had Nicky home and Hubby’s birthday and Claire had a lovely time too, so we were indeed ‘happy’ and I’m feeling much more refreshed 🙂
I hope you had a good weekend too, no doubt off on one of your lovely walks. I’ll be over to catch up with you shortly to see what you’ve been up to…
Thanks so much as always for just being there… 🙂 xx
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Ah Sherri, my heart goes out to you, my niece has similar difficulties so I am aware of how it drags the carer down. There is really nothing to say that will help but here in Gloucestershire we have a Carer’s Support Group, do you have one where you are?
I hope the sharing helps x know that you are being sent lots of loving support from fellow bloggers x Keep writing and rest whenever you can x
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Thank you so much Brenda, you are so very kind. Your’s and everyone’s loving support here helps more than you know 🙂 Being able to share like this is so incredible and to know that I can do so and then receive this kind of outpouring restores my faith in humanity.
I do attend a monthly support group which is run by the National Autistic Society for parents of adult children on the spectrum which I find helpful. At least I know that I’m not the only one, by far, who struggles in this way. Bless you Brenda xx
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Sending you big hugs too, Sherri. Life does sound very difficult for both you and your daughter. So happy that the supplements have perked her up somewhat. I hope the positive trend will last. Love to you.
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Ahh, thank you so much Sylvia, you are very kind, and love right back to you xx
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Oh, Sherri! You deserve a big hug just for posting that video. You had me twitching in my seat and smiling 🙂
I really don’t know anything about Aspergers but I’m so impressed at how you’ve carried on with your lovely upbeat posts, in spite of things at home. Yes, I do sometimes want to pull the cover over my head, but without a fraction of the justification. I love Jude’s posting. I’ll come dance with you someday if I can 🙂
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It’s a great song isn’t it? I love it and listen it all the time on my iPod, especially when out walking. No wonder I get strange looks when people pass me by as I’m doing my fair of twitching too 😉
Thanks so much Jo for your loving, kind words, it means such a lot…now let’s get dancing 🙂 x
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I love it when someone I was just thinking about pops up in my comments, Sherri 🙂 I had too much lunch. Can we dance gently, do you think?
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Ahh, it’s so nice to be thought of, thanks Jo 🙂 Now that your lunch has digested, perhaps we can bring up the tempo a bit 😉
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Hi Sherri. I’ve felt down this week too but for different reasons to you. I think it’s part of being human.
That Happy song is great. I sometimes put it on in the afternoons and the kids and I dance around the living room to it. It’s infectious.
I don’t understand why you don’t go out with your friends when you secretly want to? Are you afraid of being a miserable presence? If so, I think friends are there to support us when we feel both happy and miserable. You shouldn’t feel the need to shut yourself away just because you’re not a shining beam of happiness. I may have got this bit wrong in your post but my interpretation struck a chord with me because I hate false happiness and the pressure many feel to appear to be happy when things are not. I tell my friends all the time that if they feel sad and depressed then there’s no need to hide it away. It’s best to talk about these things and who better with than the people who care most about you.
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Oh Rachel, I’m really sorry to read that you had a difficult time of it last week, I hope that you are feeling better again.
It’s a great song isn’t it? I love dancing to it and the idea of you and your kids dancing to it makes me smile .I used to do the same thing with my kids 🙂
You are right about friends being there for us rain or shine and I am indeed blessed with lovely friends and family. I also hate false happiness and I can’t be that way because I do wear my heart on my sleeve. I know that my friends would be there for me but it’s just the way I deal with it by withdrawing sometimes as yes, I don’t want to pretend to be happy when I’m not. But I know it’s not right and my friends would be saying just the same as you. It’s something I’m trying not to do. I’ve never been an office party kind of a person but then again I do love a good party with family and friends 🙂
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Hugs,shared tears then some more hugs.followed by a bush walk chatting all the way. Some more hugs and a joint decision to do it again soon. Some more hugs. sherri I can’t go walking with you ( wish I could) but cross your arms around yourself and squeeze tight. That hug is frm me. Hope you are feeling happier soon. Lots of love irene
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Oh I wish we could take those walks together Irene, and I am really feeling your lovely hugs, thank you so much my dear friend. I feel like you just took me along a bush walk with you just now and yes, let’s make plans to do it again soon!! I’m doing better and your kind, loving words mean so much and sending my love right back to you… 🙂 x
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Smiles and hugs, and good thoughts too.
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Thanks so much for your lovely smiles, hugs and good thoughts Marlene… 🙂
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Sometimes life can simply be overwhelming. You are such a giver (I recognize that trait) and givers tend to push their needs to the lowest priority. Writing can be so incredibly cathartic, and I hope you know that whatever it is you share on your blog, I simply enjoy knowing YOU and continue to feel your kindred spirit in our shared journeys. Hang in there! I’m pushing forward, but am often taking mental health breaks for myself by carrying my laptop into a coffee shop, ordering my favorite soy latte with sugar free vanilla and then finding a table by the window, where I put on my headphones, launch iTunes and then end up ‘in the zone’…letting it all come out in the written form. For whatever reason, writing in a place that is busy with strangers and background noise, I lose myself in there…and find it easier to release into words the anxiety, frustration, and deeply personal emotions that tend to bubble up periodically. I often wish I had a crystal ball when it comes to seeing what the future holds, but I’ve learned from my cancer journey to simply keep my eyes on the horizon, keep EYES FORWARD, and take life just one day at a time. Your daughter is so very very lucky to have a mum like you, Sherri, who loves her to the moon and back. Please know that I am thinking of you, and wish for you a brighter sunrise to come. xoxo
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Your beautiful message has moved me deeply, thank you so much. You put it into such wonderful perspective, keeping your eyes forward, not looking back, being thankful for each new day…and yes, taking time out for mental health moments such as you describe. For me, it means cranking up my iPod and taking long walks. We are indeed on this writing journey together and it is wonderful to be able to share it in this way. Your loving, kind thoughts and wishes mean so much. The sunrise was indeed brighter as has been the weekend with it’s warm sunshine and time spent with my lovely family. My feet and my heart are dancing again even as I’m resolved to keep pushing forward, as you, who inspire me so greatly, do every day…bless you dear one 🙂 x
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Bless your heart, Sherri, and your daughter’s, too. I’m so sorry you’ve gone through this and still continue with the struggles. But you are a strong and caring warrior, and a wonderful mother. Truthfully, you know that “this, too, shall pass,” and the clouds will lift. In the meantime, know that hugs and prayers and ongoing hopes surround you by the many who love you.
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Ahh, thank you so much dear Marylin, and yes, I do indeed know that ‘this, too, shall pass’ and how I hold on to that. Also that the Lord’s mercies are new every morning and I know that I need to just roll up my sleeves and ‘show up’ and hopefully find some smiles along the way. Which, I do now reading your lovely, kind words and from all those here. Your hugs and prayers mean so much and I’m feeling them, and the love, bless you Marylin .. 🙂 x
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You’re a great mom Sherri. Don’t give up. You’re getting your daughter the help that she needs. And, you’re showing your daughter how to navigate through life’s problems by example.
I wish that we could get together Sherri. I’d be more than happy to just sit and listen. I have to warn you though; I’m not much on gossip. Here’s a 🙂 and a big hug for you!
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Oh Theresa, how lovely that would be to sit and have tea together. I bet you’d be a great listener too, but then I would probably talk too much 😉
No gossiping, I only meant the fun type, I’m with you on that 🙂
Thank you so much my friend, your lovely words always encourage and lift me up and I’m feeling your lovely big hug right now 🙂 x
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I feel you, and send you, and your daughter, love and all things positive.
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Ahh, thank you so much Diane, your heartfelt, loving words mean so much 🙂 x
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I’ve never been in your shoes. Sorry, I don’t want to try them on either. I can’t fathom how you do the things you do for your daughter other than out of pure love for her. You are an extraordinarily strong woman, Sherri.
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Thank you Glynis, I appreciate your kind thoughts very much.
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Sherri, you’d never know from your regular words, how much you’ve had to deal with and are still having to deal with to support your daughter. It’s no wonder you feel the way you do sometimes. I can empathise with you about the feelings of being weighted down, not wanting to get out of bed and also withdrawing from the world rather than asking for help. I’ve always thought depression is one of the loneliest states to be in – you don’t want to be told how you can fix things and want to be left alone, but at the same time, you want to be cared about. I also remember reading something years ago that said depression was anger, which, not being expressed outwardly, is turned on yourself. So, if this blog allows you an outlet for those feelings, then that’s a good thing. Sending you warm thoughts and hugs and hoping that you’ll feel lighter soon.
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I’ve heard that too about depression Andrea. It is certainly good to express these things and to be able to share what I’m feeling at times such as these here on my blog and know that I am ‘safe’ in doing so really is a wonderful outlet and certainly does help with expressing all the conflicting emotions which can sometimes drag me down.
Thank you so much my friend for your support, loving thoughts and those warm hugs which help so much. I am doing better since writing this and having spent the weekend with my family. I hope that you had a good weekend too 🙂 x
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Oh Sherri, so many parts of this sound too familiar. With all the stuff you contend with and whip into shape so practically perfectly, it’s not unexpected for you to be on a low ebb at times; we all have our limits, even the exceptionally strong, super brolly-wielding nannies. As someone who can relate to the tolls of the false advice, Vitamin D deficiencies, the failings of so-called professionals (I haven’t heard from my counsellor since November…), I won’t fob you off with clichés, because I’ve been on the receiving end of those too many times. I will just say that I hope things have brightened up a bit for you now and, if not, I’m always kickin’ around for a natter about stuff if you so require. 🙂
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Oh JG, even now you make me laugh out loud with your humorous comments. Maybe that is the problem, I’m trying to be too ‘practically perfect’ and whipping up a bit too much of that old brolly magic 😉 Maybe I need to put my brolly away for a while and limit the wielding although having said that I am feeling better since posting this 🙂
I’m so sorry that you’ve had to endure all the above failures and disappointments. Seems to be the way of it doesn’t it? Also that’s terrible that you haven’t heard from your counsellor since November but why am I surprised?
Just knowing you are here is enough, and it’s great knowing you are kickin’ around as you say…thanks so much my lovely friend 🙂
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Hmm, maybe you do need to put the brolly away, but definitely not completely; Jennifer and I might take over.
The counsellor thing is pretty shocking, I agree. Not that I particularly relished his visits or anything, but to just vanish into thin air is a new one even on me!
It’s what friends are for, Sherri! Cheeky smirks, high-jinks and escapades all round 🙂 maybe the odd G&T, though I’m teetotal, so you’ll have to drink mine for me 😉
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Oh yes, we have to get back to our high-jinks, escapades, shenanigans and cheeky smiles too JG, or how will be cope during these dark days of missing crappy counsellors and such?
Honestly, would you like me to call him up for you, just think, he could accuse me of shouting at him and threaten to put the phone down on me! I’d like to see him try to get past my magical brolly, I’d be doing a great deal of wielding you can be sure of that 😉
That’s ok with the G&T, I’m sure I can manage yours too 😉
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Haha! Well, I don’t need him anymore so long as I keep bloggin’ 🙂 To be truthful, he wasn’t much help – nice young bloke, don’t get me wrong, but didn’t really enlighten me, or tell me anything I’d not heard a thousand times before. I’m not brilliantly patient with counsellors, anyway; they don’t really cut it for me.
I just find the nonchalance of these people worrying, especially for other people who are more desperate than I. Disappearing like that, cutting off the help, whatever the reason, could have very serious repercussions.
I’m sure he’d be terrified of you! He might hit you with his catchphrase, “You’re being very negative.” Well, great Scotland Yard! A bipolar who’s depressed, being ‘negative’. Whodathunkit?
I didn’t think the extra tipple would be a problem… enjoy. 😉
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Ha Ha! Yes, blogging is the best counselling ever I agree!! My daughter has several blogs on Tumblr (role-playing) and they are her salvation. But yes, that is very bad that he should just disappear like that…thank goodness you are ok about it…
Now I really should be saying goodnight, but I have to reply to this quickly because I know exactly what you mean about counsellors not quite cutting it. As you know, my history with them hasn’t been exactly helpful either. My daughter’s previous social worker said the exact same thing to her about ‘being negative’. He told her that she didn’t look very happy and that she should go out more with her friends and get some exercise. So this is a young woman who has such severe social anxiety that she can’t go anywhere on her own, doesn’t have any friends in our town because it’s been so long since she’s gone out with them and can’t motivate herself to exercise because she is depressed. Great Scotland Yard!!!! What part of ‘Asperger’s Syndrome’ did he not get, hello???!!!!!
You see JG….no wonder they call gin ‘mother’s ruin’…. see you tomorrow, hope you get some sleep… 😉
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That’s nice. This place is my salvation, too. You should persuade your daughter to start a WordPress! I’m sure she’d accrue a following, especially if she’s as artistic as I understand she is. 🙂
It’s really silly isn’t it? That’s like saying to somebody with a broken leg, “You need to get up and walk.” If only things were that simple. Of course it’s not all and I have met some brilliant professionals, but many treat ‘case’ rather than ‘human’, not acknowledging that these are minds we’re dealing with, not limbs. No two work the same way, that’s why you have to be personal about it, and learn about the person to help, rather than trot out clichés.
Tell me about the lack of motivation – it’s a bit of a vicious circle really, because exercise is known to really help depression – and it does work for me. I can only think myself lucky that I am able to keep my social anxiety at bay, most of the time (though I still rarely go out these days, and try to avoid situations often, unless really euphoric. I often retreat to the Broads to clear my head, because I know there will be precious few, if any people around.) I had a friend staying over recently, and he was forcing me to go for runs with him at silly hours in the morning… it was exhausting, but great fun! He’s not here anymore, though, and I’ve not been since.
Mother’s ruin? Do they? I don’t know a lot about drinks. That’s mumsey’s nickname for me I think 😉
Phew! Well I’m off to bed. I’ve been naughty recently and been playing games in bed (puzzles on my tablet, I hasten to add, who do you think I am, Jennifer?) – never start playing Candy Crush Saga, Sherri P. It will take over your life.
A good night I hope it be, oh cap’n Sherri P. 🙂 Why I’ve become a pirate all of a sudden, I’ve no idea.
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Ahh, the Broads…so peaceful there. I will think of you now taking walks there…
I think the term ‘mother’s ruin’ comes from Victorian times when it was the cheap drink of choice, but I don’t actually drink it much at all to be honest, it’s too expensive, ha 😉
I have no intention of getting hooked on any games, I’ll be a gonna if I do. It’s hard enough keeping up with everything else…although I’m glad you did clarify that statement!
Hope you’ve had a good day Jim lad..and watch that parrot…ha ha 🙂
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I think you are a very sincere, loving and kind person. You are much loved here and I can’t imagine that you would not be loved by those around you in real life as well. I do hope that there are people around you who can help you feel better. There is no doubt that caring for someone takes its toll, the everyday being there for them, but also the everyday caring about how they feel and anguishing beside them also. No-one could expect you to be “up” all the time.
But I also know how it feels not to want to burden those around you. As if what you are feeling is so overwhelming that you could not bear to put that on others.
I hope you work out a way to cope with how you are feeling, and manage to feel better. You really deserve it.
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Hi Denise, and I would like to say I like the new photo 🙂
You do understand and put it very succinctly my friend – the last thing I want to be is a burden to anyone yet I also know that I need to be able to tell those around me when I’m down and not worry about them thinking I’m a burden. I can’t get over the kindness and love of everyone here and yes, I am blessed by the love of family and friends which helps tremendously. Thank you so much for always being so supportive and understanding and for your heartfelt, loving words, really means so much… x
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Some sunshine from California to warm your thoughts.
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I’m loving that Californian sunshine Evelyne, thanks so much… 🙂
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Hey Sherri – thanks for sharing – and please know that I am always here if you want to have fun – 🙂 join me online – or get on over to Virginia mon amie.
Also, I like the verse you noted – Proverbs 17:22 – but I prefer a different translation… which says that
“A joyful heart is good medicine, but a broken spirit dries up the bones.” I like this better than cheerful dispo only because it tis into how the joy of the Lord is our strength….
I like joy better than the word cheery or happy (even though that was a super cool song – very cool) but it is more than semantics to me. Because “happy” is based on happenings and can come and go much too easily – whereas contentment and joy are different – and we can sometimes find that while working through the hardest hours. Seligman wrote a book many years ago (you probably know it – but I will just note it for an example) – and it was called “authentic happiness” – and it was packed with good stuff and talked about struggle and pessimism and all that – however, when he wrote his updated version a decade later – he took out the word happy (for many reasons) and called his book FLOURISH. (pretty rich title).
and so keep in mind that we can flourish – even with struggles – but it takes getting through one day at a time – and it takes a shift in perspective – and preventing burnout.
Also- I really like Psalm 37 – where it says to “delight yourself in the Lord and he will give you the desires of your heart…” and well, I have lived this out to say that I believe it. – it does not mean that seasons will not be hard and it does not make things better right away – but it changes everything. And keep in mind that God knew this would happen and I truly believe He will never give you more than you can handle. The joy of the Lord is our strength and while that sounds like double talk to many people- those with faith know that we are strong “in” Him and that the Holy Spirit is a gift He sent us so that we would have extra strength and insight. God has good things in store. God knows the future as clear as we know the past – I truly believe that – and even with free will he knows how it will all turn out. We can rest in that – and it takes living it to really feel God’s provision – which I am sure you know plenty about – with all your experience, wisdom and seasoning.
Also, when I was in Buffalo last November, my cousins (older than me by 2 decades) well they are retired and raising their autistic grandson. And whew, it is rewarding and rich – but also a challenge at times – and well, burnout is also very real – and what helps them a lot is having the school and the “right” social worker. (Sorry about the trial you had with that area too). And so I pray that you gals continue to get the support things worked out – and please feel free to email me if you ever want a bit of encouragement – I have lots of practice! 🙂
Also would like to share a quick story from that trip. I stayed at my cousins house a few days – the weather kept me in town longer than expected and at their house I found reprieve. Anyhow, their autistic grandson, D-, is ten years old and they have had him for a few years so things are just starting to get stabilized (but ti takes a while – as you know). And when D- would come home from school – I would just wave – you know, kind of a fast, happy wave – and he would notice – but not really give eye contact. I am not sure where he falls on the spectrum, but he likes his routine and so even though I was there – he would just do his normal thing. Sometimes just stare at me for a while and then turn real quick — but he came and went and did not really respond to my many waves and warm smiles when I would kindly say hello with his name… “Hi D-….”. (But I knew it was reaching him – I just did – and I knew my being there was noticed). So on the very last day – when I was packing up to go and pick up my boys from their stay with my sis – I was saying my goodbyes and well – D- “backed” into me. It was a “backing in” body hug! It warmed my heart to the core – and it was his way of telling me so much. Those waves paid off – and I look forward to seeing him again.
anyhow, here is a blogo hug for you ((+<3+)) and you are in my thoughts and prayers. and remember – things are subject to change and good things are in store. 🙂 ~y.
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Hi Y, thanks so much for all you share here. Lovely story about your cousin’s autistic grandson. The word ‘Happy’ here is subjective, I tend to write in a way to tie in with a theme, in this case, using the word as the title of the song I shared, which I love and can’t help but dance around to! A post about joy would be a very different one as I totally agree with you, the joy of the Lord is much more valuable than merely being ‘happy’.
Flourishing is indeed something that I long for my daughter to be able to do and that is why I become very weighed down at times when this is the cry of my heart, for my daughter to live her life as a young woman should be able to but which aspects of having Asperger’s keeps her from doing. It is complex and at times I feel so helpless.
Still, there is much to be positive about and I feel much better now having spent a lovely weekend with my family and again, thank you very much for your lovely hugs, thoughts and prayers, means so much… 🙂
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thanks for the reply – and I get it!!! 😉
also, I now keep hearing that Happy song ever since your post! and ai grabbed some footage of someone dancing to it with a unicorn mask on it – I will try and share it later. lol – but truly a special song…. and special post. ❤
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Thanks Y, I did really appreciate you taking the time to share your thoughts and your heartfelt words of encouragement and support and your excellent advice about the vitamins too. Glad you liked the song too, it is so catchy I can’t stop listening to it lol 🙂 Funny unicorn guy, seems like everyone loves this song 😉
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Asperger’s Syndrome is a highly misunderstood affliction that can be so debilitating as to create those exact symptoms of withdrawal… but my MiL suffered from it (she has since passed) they did discover she suffered badly from a lack of vitamin D and B (B 12 I think), but one of the big things was a deficiency in potassium… when they got these balances right she was almost back to normal… I think the potassium lack was her reason for symptoms of dementia… but I feel for you and daughter, one of those things that requires a lot of guts and mind control to overcome… feel for you…
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I have to chime in real quick about the B-vitamins (which you probably already know) but we know a a few families with autistic children – and I recall one of them saying that the B vitamins were extremely helpful too – especially a B-complex because the B’s work better together – and need each other to synthesize (except for maybe b-12 – which I know folks get shots of or take under the tongue).
and then we know another family who said that “complete protein” drinks were key for them….anyhow, guess it really takes some sleuth work to see what works for each of us.
and Sherrie, I know you said you did NOT want advice when you wrote this post – and so sorry if this is annoying – but it is from the heart….
🙂
~y.
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Don’t worry Y, I do very much appreciate your input and this is all very helpful indeed. I know you are sharing this from the heart out of concern and a desire to help and I am very thankful. As I said to Bulldog, I am definitely going to pursue this about the vitamins and will keep you all posted 🙂
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Thanks so much Bulldog, I really appreciate your concern and also your very interesting information about vitamins. I am part of an Asperger group over on LinkedIn and an Autism specialist said the exact same thing as you about vitamin B12. I’m definitely going to pursue this for my daughter, and also the potassium. She does at least eat a lot of bananas so that helps! So sorry about your MiL, amazing that the vitamin balances helped her so much in life. And yes, you are so right, Asperger’s is very hard to understand and I do struggle in trying to explain it but I hope that by sharing here from our personal experiences I can maybe help others going through the same thing.
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Thinking of you, Sherri and sending that big smile you asked for.
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I really, really appreciate this Jane, thank you so much, I can see your lovely smile right now… 🙂
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Just wondering, do you find it harder or easier to cope when the sun comes out and everybody is suddenly shedding clothes and lounging about on every available café chair? I know it makes me feel slightly despondent, people getting all excited at a bit of sunshine.
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This is a very perceptive observation Jane and I do know what you mean. Certainly, when I lived in California I got so sick of the constant heat and blue skies that I longed for rainy, grey days just to have the excuse to hunker down indoors all day with a mug of tea and lovely, buttery crumpet or two (or English muffin as they are called as I couldn’t get crumpets over there!). I had one friend over there, Californian born and bred, who loved the rain as much as me!! Now, I do enjoy the English seasons so much even though they seem to be changing a fair bit lately but I am never failed to be surprised when I see people wearing shorts and flip flops the minute the sun is out even though it is still more than a little chilly…
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Hi Sherri, As I have always said, “When the tough gets going, God gets going.” He is forever on your side. It’s so difficult to get the help one truly needs, when difficult times knock on your door. I used to work with Autistic children, and others with diverse maladies. Being their clinician was difficult, but what made it much more difficult, and, and at times debilitating, were the so called “helpers”, or social workers. They are never at the ready when you need them. I can almost relate to your frustration. I say almost, because I have not had to deal with a close loved one, suffering from such a malady, as is your daughter. You need not ever feel that you are alone. You have a great blogging family, prepared to listen to your plight. Everyone needs to vent once in a while, and you have an outlet in us. We will listen. Please keep us posted. Blessings to you, and your loved ones.
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Ahh Johnny, you are always such a wonderful encouragement to me and my family and always ready with so many kind, loving and supportive words. It is indeed in the dealing with the ‘helpers’ that makes things so frustrating. Not my daughter! It is so good knowing that I’m not alone and that I have such an amazing blogging family here. I can share when things aren’t going so well and know that I don’t have to worry about being a burden but that you are so caring. I am blessed indeed. All blessings to you my friend and I certainly will keep you posted 🙂 And I love your saying, and so true 🙂
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Hi Sherri. I have experience too with special needs kids and I know it often feels like you’re living on a roller coaster–with so many extreme highs and lows. The struggle is to find a middle ground for yourself–despite the turmoil. I don’t have any easy answers–and I suspect there aren’t any. But you’ve taken the crucial first step in getting the right support team to help. I am wishing you strength and courage to be there for her and peace of mind that you’re doing the best you can for her. –Patti
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Hi Patti, thank you so much for your lovely message of support and encouragement, I really appreciate it. Yes, having the right support team on board has made a tremendous difference as we need to access this so that we can move forward. There are so many fronts to cover and I have to make sure that everyone is on the same page and liaising with one another, but yes, it does feel like a roller coaster, very much so. Your kind wishes for strength, courage and peace I take to my heart, and for my daughter. Bless you 🙂
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I hope you and your daughter have since found the help you need. I really can’t say much by way of comfort except that I will keep you in my prayers and hope for the best with you. 🙂
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Thank you so much Imelda, things are definitely moving in a better direction than before but I think it wore me out in the process! My daughter and I are very close and I’m so grateful for that. Your prayers and very kind wishes mean so much, I can’t tell you how much…
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Just some excessively large LOVE and HUGS coming your way lovely Sherri – nothing worse than those feelings, and you and your sweetie deserve only rays of sunshine because that’s exactly what you are. ❤ XXXXXXXXX
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Ahh, thanks so much Jo, you are such a lovely lady, I’m feeling the warmth of those rays of sunshine sent by you and the love and the hugs…really, really touched…don’t know what else to say…I’m smiling from my heart…
Have a beautiful week ahead my dear friend… see you over at your place, catching up now… much love and hugs coming right back to you…. 🙂 🙂 🙂 xxxxxxxxxxx 🙂 🙂
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