When my daughter was sixteen and battling chronic anxiety which made school practically impossible for her, our GP referred her for counselling. She took her time to do her make up and dress in her unique, slightly goth/punk style and sat in front of three female mental health professionals to answer their questions and thus, she fooled them all.
Poised, articulate, appearing calm, the team did not look past this and after her ‘gateway consultation’ pronounced her ‘perfectly fine’. Asperger’s Syndrome did not even enter their vocabulary. They did not understand the storm raging beneath my daughter’s rigidly stiff exterior as she faced three strangers with all eyes on her.
Instead, they decided that she would ‘get over’ her teenage angst (no doubt due to her parents divorcing, they said), and told her that she certainly didn’t need to be ‘stigmatised’ with any kind of mental health label.
Stigmatised?
My daughter’s response was to vehemently disagree with them, protesting that she had ‘always felt different’ and knew that ‘something wasn’t right’. She wanted help but they offered none.
And so my daughter slipped through the cracks and struggled on for another nightmare two years. By the time she was eighteen and by no small miracle having completed sixth form college, yet sufficiently broken that she was unable to attend university or look for work, she was forced to attend the Job Centre.
It was a Work Psychologist there who identified her as needing referral for further evaluation; at last, our GP took us seriously and referred my daughter to the Asperger Specialist Team. After an almost six month-long diagnostic process, my daughter was ‘stigmatised’ with the label of having Asperger’s Syndrome.
Somerset Sunset
Peace in golden beauty at the end of exhaustion
(c) Sherri Matthews
But for us it was a relief, because with her diagnosis, she was able to gain access to a system designed to provide her with the benefits and support she so desperately needs.
Yes, a good, strong family life is all important, but financial limitations need practical solutions too. The stigma of having a mental health condition should not exist in the first place. But it does, even in our educated and should-know-better society.
Not everyone on benefits is a work-shy, lazy, good for nothing welfare scrounger, Mr Prime Minister.
For this week’s flash fiction challenge, Charli writes about her diagnosed PTSD (Post Traumatic Stress Syndrome) and that of her husband, ‘Ranger Mills’, who fought for his country in Grenada as a parachutist in the Army and who also suffers from PTSD.
The difference for him is that the American VA (Veteran’s Administration) has not given him his formal diagnosis and without that, he cannot access the benefits to which he is entitled. Charli is his advocate, and she has his back. She will fight for and with him and won’t let go.
Her prompt, therefore, asks:
‘August 12, 2015 prompt: In 99 words (no more, no less) write a story about a character who is called to have the back of another. What circumstances led up to this moment? What are the character motives? Think about the interaction, the setting, the tone. What does it look like to have another’s back?’
I won’t let go either. But sometimes it gets lonely as a carer and an advocate. Sometimes we too need help and support, someone to come alongside, take our hand, and guide us through when we are overwhelmed. Mental and physical exhaustion afflicts us too, but we don’t like to say too much about that because we have to be strong for the person we love and care for.
Help, however, can come in surprising ways, reminding us that someone is looking out for us, whether or not it’s their job to do so. I hope Mr & Mrs Ranger Mills find that help along the way, just as I have, from time to time.
With this in mind, here is my flash, in 99 words no more, no less (needless to say, it’s another BOTS – Based On A True Story):
Back Up
The questions had started out basic but became more complex with every turn of the page.
Write in as much detail as possible the applicant’s difficulties with everyday tasks.
She sighed and ran her hands through her unwashed hair as she glanced up at her kitchen clock. Damn. Already noon and still she hadn’t showered.
Her phone vibrated, she jumped.
“Hello?”
“Mrs Martin? This is Dee Caldwell, the Council Welfare Officer. I had a message to call you about helping fill out some forms for your daughter. When can I visit?”
Someone had her back. Someone cared just enough.
A View From My Summerhouse 
Exhausting to live with, Sherri, even though, as you say, you now have some help and a prescribed method for coping. Aspie is still an individual, isn’t she, and we can never wholely predict the best way to help. Bless you, darlin’. You’re doing a grand job 🙂
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Things are better than they were Jo, that’s for sure and you know well the battles we’ve had over the years to get to this point. And yes, it really is about finding what works for each individual. Thank you so much for your lovely words, bless you Jo… 🙂
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You’re spot on with this post Sherri. Caregivers and advocates need plenty of support too as their role can easily be overlooked in a situation. I’m always amazed at the wonderful posts you share that shed light on Asperger’s Syndrome. Thank you again for a fun and thought provoking “flash” 🙂
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I’m honoured to be able to share my thoughts here as they come up, always with the hopes that I can better convey the struggles giving more awareness and acceptance of Aspies and yes, of their carers and advocates also. Thank you so much Heather as always for your wonderful words 🙂
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Oh, Sherri, I ached for you and your daughter. I have three dear friends who have either a child or a grandchild with Asperger’s, and I’ve sent all three a link to this post. They will relate to your experiences, and they’ll love your story. Well done, Good Mom!
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Oh Marylin, I only ever want to share my heart for this very reason – to encourage others facing similar situations to know that they are not alone and that there is a way forward, albeit slow and frustrating and utterly exhausting at times. I hope that your dear friends will find this post in some way useful. Thank you so much for your kindness 🙂
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Sherri, you and your daughter are superstars. Searching for a diagnosis can be mentally and emotionally draining, but persistence is key. Yay for you for being a wonderful momma bird!
Great post! ❤
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Ahh Jill, you are so kind, although I am more a growling momma bear at times as believe me, I have had to growl more than once, ha!!! You know well the battles we’ve had in getting Aspie D proper support (aside from financial benefits) but we are at a better place now than we were. Thank you so much Jill. Some chicks take a bit longer to fledge but that’s okay 🙂 ❤
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Absolutely right about society’s attitudes to mental health, and about the need for carers to get support… Well done,Sherri, you are truly an inspiration
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Thank you so much Sue, really appreciate your kindness. I was a bit stirred up when I wrote this…
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Not surprisingly…
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Dearest Sherri:
As usual, your personal preface moved me. I cannot imagine the frustration and angst you and Aspie D suffered…well, actually I can because you articulated it so well. Depression and fear of being stigmatized led me to deny help offered until crises points. I am so glad someone finally has your back.
Love,
E
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Dearest Elizabeth, I am so worry you had to suffer all you did and had to reach crisis point before you were able to receive help. Having read your accounts of that time, I know that you went through hell. The lack of understanding of such mental health conditions horrifies me. Writing here is barely a drop in the ocean but at least I can share our story in the hopes that it helps others, as you also do through your powerful words. Thanks you so much for sharing with me… Love to you from me… 🙂
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It was good of you to include the feelings of the caregiver as well Sherri. Often we feel we have no right or nobody to complain to when someone else’s welfare seems to trump our feelings. Sometimes the hardest part of dealing with a disease is getting it finally, and properly diagnosed. My cousin’s son has Asperger’s and for years he was very misunderstood. 🙂
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You make an excellent point Debby. I haven’t written about things from my point of view before, for this very reason. Of course, my role as carer is very different to someone looking after a physically ill and/or elderly person, although my daughter does have her share of physical ailments. I am so sorry that your cousin’s son also suffered such a lack of misunderstanding. It is very painful. Things are better now than they were back in those dark days, but I never take these times of ‘status quo’ for granted… Thank you so much for your lovely comment 🙂
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Thank you for your lovely response Sherri. I’m happy to have found your blog through Sally and the gang. 🙂
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Me too Debby, so very glad to have met you 🙂
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You did a great thing here. You gave voice to so many issues that needed to be addressed. The exhaustion, frustration and deep pain can be felt. You are a wonderful writer to get that so clearly across.
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Thank you so much Marlene as always for your wonderful encouragement. I hesitated to share from my point of view as I don’t ever want to convey an attitude of ‘poor me’ (can’t bear that!), but then I realised that it was important to do so, as not only illustrating that I have my daughter’s back, naturally, but that there are others who have had my back, (to tie in with the flash theme) and to also use this opportunity to hopefully encourage others facing similar that they are not alone. Obviously this is very different to family and friends, who never falter in their love and support. I very much appreciate your validation of my decision to post this, means so much…
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Hmm. .. even when you’re in the system, you can’t access half the services because there’s no budget or no staff. I can’t believe how long it took to get a diagnosis… shocking!
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You are so right Ali. I didn’t go into that here (I have written more about this in previous articles) as we did indeed have a nightmare time once ‘in the system’. Getting my daughter’s financial benefits was one thing, but getting support from the Asperger’s team was quite another. Somerset is one of the worst funded for mental health and although things have improved with faster diagnosis rates (and more awareness, so I believe), there is still a long waiting list and as before, once diagnosed, the help afterwards is pretty non-existant. I attend a support group for parents of grown Aspie children, and although we receive visits from various heads of various committees, nothing actually seems to change much for one simple reason: lack of funding! And to think the Government wants to cut things further…but I promised never to go into politics on my blog!!
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What a wonderful post Sherri! I certainly know I felt relieves when we finally were done with “wait and see” and had a concrete diagnosis for Lan. I pray you and your daughter are well. Your story was spot on. Caregivers carry a large load but in many instances, who carries them? Peace to you!
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Thank you so much Lilka. Yes, having that ‘concrete diagnosis’ goes a long way doesn’t it? Bless you for your prayers, we are doing better than those earlier dark days, but as you know, it has been a battle. I am grateful for any times of relative peace and calm, and never take that for granted…and I also pray that things are going well for Lan at school. And for you too, in all ways, from one momma bear to another, may that peace reign 🙂
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I am happy you shared how labels can help provide much needed financial and emotional assistance, Sherri. I hope Veterans will sometime soon finally have doors opened and wishing more young people had such fantastic advocates as you have been for your daughter.
I enjoyed the metaphor for her and your Peace of mind found in the golden sunset. 🙂
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Hi Robin, and thank you so much for your wonderfully kind message. Veterans need all the help they can get, I am shocked to learn of the still high suicide rates and the terrible struggles they endure. I am so grateful that I can advocate for my daughter, but I am so sad for those who don’t have that in their lives. And there are many as you know.
I am so glad you enjoyed the meaning behind the photograph. I wondered which to use and that one sprung immediately to mind 🙂
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I too, have the “stigma” of mental illness- bipolar. We just want help to be normal! God bless you for making sure your daughter got the help she needs.
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Oh Meilnda, I am so sorry that you have to suffer this ‘stigma’ in today’s so-called enlightened society. It is all wrong. As you say, given the right help (as anyone with a physical illness would receive) you can live your life as healthily as possible. Thank you so much for your lovely words…
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I am having a great life, now. It took almost 54 years to make it here. You are so welcome, my friend.
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Oh I’m so happy to know that Melinda, I thank you for your friendship 🙂
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Your own strength as an advocate comes through loud and clear. It is so easy for the system to say “fine” when a person is not fine and needs that help the diagnosis can give. But as you point out in your flash, the carer can use help, too! I’m so glad to have your daughter’s back. It’s not an easy position, but neither is her struggle. She needs her back covered. Thank you for an encouraging post and flash!
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Thank you so much Charli, I’m glad you found this encouraging. You know so well the endless frustration of being told someone is fine when they are far from fine. I was so sorry to read of Todd’s experience at the VA. And you are right, my daughter’s struggle is far from easy and I will do all I can to help lighten her load. As her mother, however, sometimes I feel that my advocacy is viewed with some suspicion. But that’s a whole other post I’ve been brewing for some time!
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Ah, dear Sherri. I’m so familiar with your struggle as I see so many similar cases through school. However, the big difference here is that my students were diagnosed early as being on he autistic spectrum so therefore are receiving the educational support they need. How on earth poor Claire managed during her school years is testament to your unerring and fantastic support. Don’t ever forget that, Sherri. You are doing a marvellous job but I know how blooming hard it can be sometimes when I talk to the parents of these kids. And no, stigmatised is not the right word. We need to turn this around. Any young person struggling to make sense of our world because they are autistic needs our understanding. We need to discover their own unique talents (I believe if they are high functioning and are in mainstream education there is every likelihood that at some point their unique condition will prove to have advantages) and harness them.
Having said that, the primary carers often do get overlooked and it’s perfectly ok to feel overwhelmed – even resentful at times. All normal. Keep doing what you’re doing Sherri and if you feel like blowing your top sometimes, then we’re all here – without judgement!
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Dear Jenny, I am bowled over by your wonderfully warm, encouraging, kind and wise, oh so wise, words. Thank you so very much. You do indeed understand from your experiences at school and you know of all that I’ve shared before, although this is the first time I’ve written from my point of view as not just Mum, but as carer and advocate. This is mainly because I don’t want to seem to be complaining or asking for sympathy ( you know that’s not what I’m about), but I am so glad to be able to voice what is truly in my heart at such times, knowing that I am safe here in our blogging community and also that it might help others to know they are not alone when facing similar.
I totally agree with you about education and this is a huge part of my frustration..and yours too, I can tell! You are a wonderful advocate too Jenny! I know for a fact that if Claire had received the proper support during her school years, she would have excelled. The overload of noise and disruption in class and the constant reminder of feeling that she was an alien amongst strangers (American, British, all the same..) caused her such severe anxiety and stress that for years she begged me not to send her to school. How different things could have been…but no good looking back.
Things are much better now as you know, but I am so very grateful for your support and for letting me vent and share my times of exhaustion honestly here, and yes, blowing my top too if needs be! Knowing you are ‘there’ without any judgement helps me more than you know. In fact, reading your lovely words brought a little tear to my eye…but in a very good way 🙂 xx
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I’m sorry it took so long for a diagnosis. I felt an enormous sense of relief when my own son was diagnosed too. Once it is diagnosed you can start to develop strategies for dealing with it. But prior to that it’s really just stabbing in the dark.
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You are so right Rachel. For years, that’s just how I felt, ‘stabbing in the dark’. I trusted that the professionals would know the difference between a moody and sullen and yes, difficult teenage girl and one with Asperger’s, but I was shocked to discover the sheer lack of misunderstanding and knowledge of this spectrum disorder. I am so glad that you received your diagnosis for your son while still school age, as this will help him greatly (and you!) as he navigates those school years ahead 🙂
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Wonderful post, Sherri. Really wonderful. Such truth ❤
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Thank you so much dear Jenny Jen Jen. I know you know ❤
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Very moving. Well written. Have you read the book called “look me in the eyes”?
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Hi Jodi, and thank you so much. No, I haven’t read it but should do, thanks for the reminder 🙂
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Our book club read it, and I have a completely new and enlightened perspective on Asperger’s.
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That’s great, thank you so much for letting me know that.
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My son is so similar! We have taught him “proper” behavior and social “scripts” to follow in conversations. He’s also now learned some things on his own by watching and copying. But the label, the diagnosis, was the best damn thing that ever happened to him or this family. (My other son, too, but that’s a whole different story.)
This —> “But for us it was a relief, because with her diagnosis, she was able to gain access to a system designed to provide her with the benefits and support she so desperately needs.” Yes! Exactly. Though any stigma is bullshit. For any label. “You’ve come a long way, baby.” (Both of you.) ❤
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Oh Sarah, your comment means so much to me, thank you so much for sharing this from your own family’s experience. My daughter has learnt her social cues by copying. She told me once, some years ago, that she was fascinated by the way I interracted with shop staff, strangers, when paying for something. In turn, it amazed me that she actually studied that! It’s wonderful that you have taught your son in this way (but no surprise to me as you are a wonderful mom) and I so understand about him watching and copying. You know exactly what it feels like to at last receive that diagnosis for your sons. I am so glad they got theirs while still young, how it helps to know…understatement to say the least!
Ha, yes, bullshit is right! My daughter is tough and she knows how to handle herself online but in certain forums it is acceptable to insult someone by calling them ‘autistic’ the way people used to say ‘retarded’. She says there is a lot of hatred out there of people like her. But yes, I love your last line…we have indeed come a long way and it feels damn good 🙂 Thanks so much Sarah, hugs… ❤
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I’m so glad your daughter got the help she needed in the end. They say “better late than never”, but earlier would have been so much better. Fancy them trying to put you on a guilt trip about your divorce being behind her issues, too. Thank goodness for the enlightened Job Centre psychologist. As for Mr Prime Minister … I won’t even start on that one, or will leave far too long a reply that might need censoring! Lots of love to you and your lovely daughter, Sherri xxxx
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Oh yes, that and ‘dragging her from America to England’. I was sitting right next to her when they pronounced that, but of course didn’t look at me. I was there because she was a minor and because she wanted me to be there. I said nothing but she rose to it vehemently and I was most impressed. But yes, talk about a bad day. I thought well, if they don’t know what to do, let’s blame the mother. Pretty typical really I suppose. And I’ll take it on the chin if it helps or gets things fixed, but it doesn’t! Any guilt I may or not be feeling doesn’t help my daughter who has Asperger’s!!! Yes, the Job Centre helped us out as it turned out.
Haha, yes, I vowed never to discuss politics on my blog, but I just had to let that slip in!
Thank you so much Sarah for your lovely, kind words and lots of love back to you too…and I will certainly send yours on to my daughter… 🙂 xxxx
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When I told Mister about that pronouncement of theirs, he said “bloody typical” as he’d experienced a similar thing years ago. I think, Sherri, that so-called experts do this because they’ve failed to make a medical/psychological diagnosis so they’re grasping at straws to justify their jobs.Your daughter might be reticent about going out into the big wide world, but she certainly has proved feisty when it comes to defending her wonderful mother. Good on her 🙂 xxxx
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I totally agree with you and Mister Sarah, and who better to blame when they cannot find that diagnosis than the dreaded mother? And therein lies another blog post or two…but I will save those rants for another day 👿 And thank you so much for all you say about my daughter and again, you have hit the nail on the head: she is feisty and principled and I am immensly proud of her 🙂 xxxx
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I couldn’t help but feel frustrated at the beginning of your post but thankfully, your daughter did find some help in the end which is a silver lining when it comes to the health care “experts”…
What a wonderful sunset, too! 😉
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Thank you so much Eliss for your kind words…things are better now than those dark days, still a long way to go, but better, and I do like to leave things on a somewhat positive note. And I’m glad you enjoyed the sunset 🙂 Have a lovely London weekend my friend 🙂
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I really feel for you and your daughter, Sherri. What a difficult time she’s had, but getting the help she needs must be such a relief. Love your story and it’s happy ending. Thank goodness for dedicated people like Ms Caldwell. 🙂 xx
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Thank you so much dear Sylvia for your kind words. Things are better than in those dark days and yes, very much a relief to know that she now has the proper support. Oh I ‘m so glad you enjoyed the flash. Mrs Caldwell was a godsend 🙂 xx
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Sherri, This is such an important post with such valuable insights. I have loved reading the comments and am not sure that I can add anything new. But I can add my voice to their encouragement. What a fabulous job you have done with Claire, and how well you supported/support her when she needed/needs it. How frustrating to have to wait so long to get help, and to go through an interview and be knocked back. Being told there were no issues, that she’d grow out of it, and it was your fault anyway is such a slap in the face! It is obvious that, just as one-off school assessments don’t give the full picture, one-off mental health assessments don’t give the full picture either. There is so much more than a few answers to a few questions can give.
I think it is great that you shared your feelings of being overwhelmed by your multi-roles of mum, carer and advocate at times. Each of the roles is distinct but they are firmly entwined as well. Your honesty will help others admit that it is not always easy too. The recognition can make it easier both to ask for help and to be kind to oneself. I’m so pleased that Claire is making some progress but, while the past can’t be changed, it is difficult to not question how different life might be if she had received the support she needed earlier.
Hang in there, Sherri. Look after yourself and be kind to yourself first.
Oh, and your flash is brilliant. So evocative. I’m pleased the assistance came when it was needed.
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Oh Norah, thank you so much and I’m so glad for all you say because I don’t like to share much about ‘me’ in this role as I don’t want to seem to be wanting to complain or self-pitying, but it’s wonderful to know that you ‘get’ why I shared this and that yes, it is important to remember that those of us who are carers/advocates do sometimes need to ask for help. I learnt this the hard way but once I did, what a difference it made! I so just want to encourage others to do the same. I’m so glad you liked the flash, and yes, when that phone call came and I got the help I needed, we had a breakthrough with getting Claire the proper assessments for her financial assistance and this led to me receiving a Carer’s Allowance, a small weekly amount from the Government but oy boy, does it help! Especially since I had been laid off not one but two jobs about the time of Claire’s diagnosis and finding a part time job to fit around all her appointments was, at the time, impossible. It was so overwhelming when at first immersed in the world of mental health and benefits and finding myself a carer as well as ‘Mum’ and of course, wanting to know as much as I could about Asperger’s for my daughter. I take on board what you say about ‘being kind to yourself’…thank you for that reminder 🙂 It was a very difficult time, and yes, I am convinced that things would have been much better for Claire if only she had received her diagnosis much earlier, but as you say, there is nothing we can do about that now. At least I can share our story now as things become more positive and again, to hopefully encourage others. Loved your wonderful comment, again, thanks so much Norah 🙂
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I think being a carer must be a very challenging task. It must take a lot of strength to take each day as it comes and not see the responsibility stretching far into the future without reprieve. I look at parents of children with disabilities and admire their patience, persistence and love. I wonder how I would cope if I were ever to be in that situation. While our children are young we are carers for them, but we know those days absorbed by the needs of another are going to pass. To know that they won’t pass must be a daunting prospect at times. I’m sure the carer’s payment helps but is no real recompense.I think it is great that you share your story to encourage others, and hope that things with Claire continue on the positive track. 🙂
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Yes, this is it exactly Norah: as parents of small children, we expect to be carers,naturally, but we know that that very role will one day come to an end, naturally. But when it doesn’t and suddenly we as mothers find ourselves as carers and advocates for our adult children, well, that sends everything spinning on its proverbial axis. I so appreciate all you share with me, thank you so much and for your well wishes and support 🙂
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Glad that you and your daughter were able to find the support you needed. Your story has reminded me that “not normal” and “perfectly fine” are two innocuous phrases that actually carry a lot of weight.
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Thank you so much and excellent point, they do indeed carry a lot of weight and can cause huge problems…
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That call from Dee Caldwell – just a phone call – made such a difference. She was doing her job, but her voice on the phone might be the best sound Mrs. Martin heard in a long time. Superb Flash!
So glad there was diagnosis at the end of it all. I understand what the family went through — must have been really, really tough. Trust me, God’s with you, my dear friend. Stay strong.
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Oh it really did Mahesh, a godsend in fact. The fact that someone not only followed up on their promise to call back, but actually provided help and support while navigating a system that I knew nothing about really was such a blessing.
Thank you so much my dear friend for your kind and encouraging words, which uplift me greatly. Bless you.
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A panel of three mental health professionals, how intimidating is that for someone referred for counselling!? It must have been such a struggle for you all, thank goodness you eventually got the help you needed, though I know that doesn’t mean the struggle ends. You’ve had your daughter’s back, I hope there’s always someone to have yours 🙂
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Yes, can you imagine? Those days were horrible and when I look back I wonder how we came through it, but we did and things are better now, although as you say, by no means ‘perfect’, but then, what is? Ahh…thank you so much Andrea, that is so very kind of you 🙂
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Ugh, I feel for you and your daughter, Sherri. I’m so glad she was finally able to get the help she (and you) needed. It’s that gray area where someone appears to be functioning, but isn’t quite that is the most difficult. When my son was about 4 we had that situation where he tested just inside the “normal” range meaning that he had some problems that would make school more difficult, but not enough that the government would provide any kind of help. We were advised at that point to put him in private school if we could do so. (Private in the U.S. being outside the public system where the government has a system in place to help children who need it, as you know). These professionals felt that a private school would be more willing to work with my son and with us, his parents, on ways to make a school education work for him. Luckily, we were able to swing it through 8th grade (with some help from my dad for awhile), and it made a big difference. I can’t imagine what your daughter went through to face that panel and feel she was being judged by them. xoxo
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Thank you so much Luanne. Yes, it was a very difficult time, but we got throught it as we do and things are a lot better now. I am so glad that putting your son in private school helped him and that you were able swing it (and thanks to your dear dad 🙂 ). I remember my daughter being told by one teacher at her school that if she found things too noisy and disruptive in the classroom (and this was without a diagnosis), she could study in a quiet, separate room, but everytime she mustered up the courage to ask to go into the room, nobody was available to supervise or unlock the door. So her trust was completely shattered. For an Aspie, this is so terribly difficult to overcome and she never spoke up again while at school. And all the time I keep thinking, why did nobody there pick up on her struggles? She was invisible and that is the tragedy of Asperger’s Syndrome, females especially who tend to withdraw and keep quiet and ‘disappear’, and of course, she was bright in English, history, languages etc. (but struggled terribly in math, having a then undiagnosed dyscalculia, and all sports – dysphraxia – which should have given them a clue as these often go hand in hand with a spectrum disorder) and kept out of trouble. But no good looking at the past is it? What matters is now, and sharing our stories so that we can hopefully help others facing similar. xoxo
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Sherri I think you know we all have your back as well in whatever way we can. Unfortunately for your daughter she was too good at fooling them and didn’t get the help she needed until she had really disappeared inside herself. I’m glad that she is now getting help and hopefully will over time emerge back into the world but a world that is kinder and not so exacting that will let her feel safe and loved in it. And you know that you need support for those times that are overwhelming. Your flash showed some of that support coming. I’m always up to a walk when you need one. Having the diagnosis lets you move forward on hopefully a recovery journey. <3:)
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Ahh…such kind words, thank you so much dear Irene. Yes, that is the thing about Asperger’s, especially in females, the ability to fake social clues and hide what they are really feeling all too well, and then of course the effort it takes to do so causes later meltdowns and shutdowns that only those closest to them experience. But as you know, things are much better than they were back then with proper help in place (despite a few battles along the way). Thank you so much for having my back here and yes, a walk sounds just what the doctor odered. It’s wet and humid here so I’ll get my boots on for the off… 🙂 ❤
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what happens in a melt down? You saying those words makes me think of someone I know and wonder if that is possibly their undiagnosed problem.
We too have a wet day here so it is boots for that walk whereever we go. ❤ 🙂
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I would like to write more about meltdowns and shutdowns in further posts Irene, but here is link I found for you that you might find helpful for your friend. http://www.myaspergerschild.com/2008/04/aspergers-meltdowns-how-to-cope.html
A meltdown, in essence, is when the child/person loses it to the point of extreme screaming/crying/yelling/ hitting out (as a child more commonly) and then, once exhaustion (mental and physical) hits, into a shutdown where barely anything can be managed, sometimes for days at a time.
Got my boots on and my jacket, chucking it down here… 😮 ❤
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Sherri I hear you loud and clear. We never give up on our kids and my son accepts he is different and celebrates it. He says his autism makes him who he is and he wishes he could give it to some of the kids at school for one day, maybe then he would be better understood. So happy you finally got some help.
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Thank you so much Kath. That is so wonderful that your son celebrates his differences, what a very great gift indeed ❤
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I guess when you are diagnosed so young it does help us to talk to him about it and the fact my husband believes he is right there with him on that spectrum. Yet they are so different like Mr Tidy (hubs) and Mr Messy (my boy) but I love them both so dearly Sherri. Have a wonderful day.
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Ahh, dear Kath, your heart overflows with love for your hubby and beautiful little boy. And it is the love within our families that matters above all else. Thank you for sharing your beautiful heart with me…
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I so feel for you over this Sherri. The system so often lets the people down who most need it. I’m going through a very similar situation with my mother at the moment. I am forever having to battle to get her the care and attention she needs and it seems that unless you fight then you don’t get. It should never be like that. People should be offered the help without having to even ask for it when it is clearly evident that they need help.
Your piece of flash fiction makes this so clear. Well done. This is the kind of stuff politicians should be reading and acting on rather than trying to fight the people who put them where they are.
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Hi Hugh and thank you so much for your lovely comment. Likewise, I am so sorry (but, and I hate to say, not surprised in the least) for all you are having to contend with in getting your mother the right care and support. You are absolutely right, it shouldn’t be that way and it is exhausting isn’t it? It most definitely shouldn’t be this way. Things are better than they were with my daughter, but I am still in the thick of it with the worry for her independent future.
Thank you particularly for your last paragraph, I totally agree. There are so many families like us who struggle quietly and are figthing and sometimes overwhelmed and trying to navigate a system that is getting harder and harder to access. The budget cuts and prevailing attitude towards those on benefits (and yes, there are those who should be working and aren’t, but that’s a whole other story) make things even worse. Perhaps I should send my flash to the Prime Minister…as if he would bother to read it, not 😦
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He’d probably have someone else read and respond to it, Sherri. That’s certainly what I have seen whenever I have written to the bosses of large companies. You can always tell when the letter or email has not been written by them. I know they are very busy people but unless you are hands-on, then you just don’t really know what is exactly going on. And what do most big bosses say? “We need to learn to listen to our customers more.”
I’m off the soap box now 🙂
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Ha, yes, you are so right Hugh, totally agree. I will get right up there on that soap box with you. Well, we do what we can do and roll up our sleeves don’t we? Maybe one day, things will change for the better and we will be properly listened to. Let’s hope so.Oh look, I just saw a pig fly by my window…
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You should be both be proud of yourselves for achieving. The system needs to be fixed and aimed at people who need help and focus on them rather than people just on the make. It is strange that the health professionals were err from a diagnosis which would help because of the fear of stigma. At least these days people are educated and understand these things a lot better than even five years ago. You both have a supportive community on here should you need it.
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Thank you so much Ste, I do very much appreciate your support and kind words. Things are better, definitely. Not perfect, but better…and for now, I’m glad that those days about which I’ve written here are behind us. I agree about the system, it has gone too far the other way now (and yes, get those who can work back to work, of course) so that those who do have genuine need are being punished it seems. And yes, I was shocked at the attitude behind the counselling team at that time, not quite believing what I was hearing. The old addage sticks though: if you can’t find a diagnosis, blame the mother. Works every time…
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As I read this I recall the Herculean task you faced to arrive at where you are at now. And I know it is by no means over but what you have overcome-amazing! All along I have admired you perseverance (actually in awe of!) I realize too that you must have longed to throw in the towel time & time again but you didn’t. There are not enough words to say how proud I am of you and these words truly seem inadequate. All you have done speaks of your great love as Mum for your dear daughter. The flash fiction was great and reminded me how I much thank God for those who have had my back. Some of who are long gone now, Steve, parents and grandparents but a few remain-toi? 🙂 much love xoxoxoxoxo
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Ahh dearest friend, you know and how. Your words bring a tear to my eye for all we have shared and battled and overcome (and yes, battle still) in our own ways all these many, long years… And such love for those dear ones now gone ❤ Thank you so much for your love and prayers and support and encouragement and yes, for having my back, always. As I do indeed have yours…toi et moi avec amour mon tres cher amie 🙂 ❤ 🙂 xoxo
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Et je t’aime mon cher ami!! xoxo ❤ ❤ ❤
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I meant amie! 🙂
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Voila!! Ami? Amie? Tres bien 🙂 ❤ ❤ ❤ xoxo
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Well done, Sherri.
I’m reading a book right now called “The Reason I Jump,” written by a 13-year-old, who has Autism. It’s enlightening me, and helping me to see how very, very difficult it is for a family to have to deal with these kinds of disabilities. Keep writing — your words will help and encourage others, and I hope you will be blessed with oodles of back-tenders in your daily life. ❤
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Thank you so much dear Tracy ❤ I must look out for this book. I have been encouraging my daughter to write a book. She blogs (has several, role playing mostly, for which she writes endlessly) and I know that her experience would encourage and enlighten so many, but she is not at that place yet. I hope so oneday, because she is such a creative, beautiful soul and I know she has so much to give…
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I came looking for a current entry and found this one. I hadn’t heard of BOTS before. But I am aware of the various degrees of differently-abled. From friends who now have family members in group homes to those with mild differences that require coping skills without meds.
Yes care givers need someone to have their backs too. For several years I was my MIL’s primary go to person. It is tough enough to do when one isn’t far (location wise), but the further family stretches the more difficult it can become.
Continues success for you and all of your family. Thanks for enjoying my Onion story at Carrot Ranch. ~Jules
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Hi Jules. Yes, that is a good point about the issue of distance, which only adds to the stress of the caring role. Feelings of ‘aloneness’ for carers are so often overlooked. Thank you for your caring and kind wishes, I very much appreciate it and for sharing with me. I did enjoy your Onion story very much! Thanks for coming by to look for mine, I tend to get them out at the last minute on a Tuesday. Sadly, I won’t be blogging now for a while as I am taking a break to focus on completing my memoir and then taking a break with my family, but I very much look forward to reading more of your flash fiction over at the Ranch when I return! See you soon… Sherri 🙂
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Best to you and yours.
Always family first 🙂
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Thanks so much Jules and the very best to you and your family too. Take care 🙂
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I was in my thirties when I was diagnosed with epilepsy. The doctor seemed almost apologetic to be giving me a label that, in that past, had see. People locked into mental institutions. Personally I was glad of the label. At last I knew what it was. After months and months of possibilities including a brain tumour, epilepsy seemed like a pretty good deal to me.
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Oh Marie, I am so glad that you were at last able to receive your diagnosis and ‘label’ so that you knew at long last what you were dealing with and so could receive the proper treatment. What an awful ordeal you suffered. I can well imagine your relief. I think you bring up a very important point about the labels of the past and what they meant still filtering into today’s medical mindset so that the ‘stigma’ still exists where it shouldn’t in our more enlightened age. Hopefully, it really will become a thing of the past.
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Sherri, you’re such a wonderful mom! Your daughter is lucky to have you. I wish my mom had known about depression when I was a teen! It may have saved me years of battling it without trying to self-medicate with drugs and alcohol! But in the 70’s parents just didn’t know. She still tried to help me which is all that mattered.
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Well I do my best Patsy, and so kind of you to say, but I do wish I had known more about Asperger’s and my daughter’s problems. I trusted the ‘professionals’ to know, but they didn’t either. This is changing but as with depression and other mental health disorders, I do believe there is still misunderstanding in many ways. Things were different in the 70’s for sure, but we all just do the best we can as parents. Your mom tried to help you and that is so important that you remember that and the love she had for you. Nothing stronger than a mother’s love for her children. Bless you my friend xoxo
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I’ve been saving this in my inbox for more than a week and now having read it, I am both moved and touched by your story. I think people are slowly waking up in this country to the way people with mental health problems are stigmatized and sidelined … or eventually incarcerated. I remember back when Reagan defunded mental health back in the 80s. I was in LA then and overnight it seemed a storm of seriously disturbed people had descended on the city. On the other end of things, at least employers began to add behavioral and mental health counseling as a benefit a couple of decades past. Of course that all depends on the kind of insurance one has in our crazy patchwork system, mostly profit-oriented insurance industry. As for government assistance, well good luck getting a decent counselor with individual personalized attention. Part of the problem is this country is the old individualist mantra of bucking up and taking care of yourself … and the issue you mentioned … the suspicions that fall on the heads of anyone receiving government assistance of any sort. That’s where family comes in! Sherri, thanks for sharing such a personal story. I have one of my own concerning one of my children that I will write publicly about one of these days. You are a great inspiration in that regard.
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Hello Jeanne, and thank you so much for sharing your thoughts with me, I am greatly humbled by your words. You could be writing about the same system here, except of course we have the NHS. The go-to here for counselling now seems to be CBT which helps many, but is not effective for helping those like my daughter with Asperger’s. Also, the wait for counselling is long. So we look to private, but that is extremely expensive, unless given through insurance provided by a family member’s employment as a perk. And then, when certain therapy is advised (art therapy for my daughter at one time) we were told that due to funding cuts, it was no longer available. Other Mental Health staff, such as social workers, are not understanding of Asperger’s, or at least they didn’t seem to be at the time of my daughter’s diagnosis. It took me another year of battling to get her re-referred back to the Asperger Specialist Team (from which she had been discharged soon after diagnosis for some unaccountable reason) so that she was able to receive proper counselling with an Asperger Psycologist. But yes, the attitude towards benefits is not good. Through our personal family experiences, I have come to be far more mindful before jumping to conclusions about the circumstance of others and careful not to jump on the band wagon of tarring everyone with the same brush: there are many families ‘out there’ who, right now, in this country, and terribly scared of the cutbacks the government is proposing. All designed to get them back to work. But what work? And who is going to supervise them and help and support them and provide the right kind of jobs? Oh I could go on, arrgh…
And I hear you about Reagan and the 80s…it happened here too…
Oh Jeanne, I am humbled that you feel moved to share your own story of one of your children, when the day is right to do so. My thoughts and the very best of wishes to you and your family. I look forward to seeing you soon when I return to blogging after my break… 🙂 xo
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There is such a monumental amount of work to still be done when it comes to Mental Health. It’s disgraceful how bad the system is. I found this out when my niece came to live with me for a year and I fought tooth and nail to have someone take her seriously and help her. She “looked” too good and like your daughter, “fooled” the experts even after me warning them that she was fooling them. The bottom line was that if she was not in immediate danger of hurting herself and others, she was “fine”. They had no room or beds for her. I fought with so many mental health professionals in advocating for her. Then, when she turned 18, that was it. They no longer really cared.
I am glad your daughter is getting the support she needs. 🙂
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Dear Maria, my heart breaks as I read about your neice; I am just so sorry because I know every word you type. If, in the ‘professionals’ minds they are not considered a danger to themselves or anyone else, then that’s it. Phew. So they can’t be all that bad then, they think, we’ll give ’em a few pills and send ’em on their way. Or, give them nothing, prounouncing them ‘fine’ when they are so very far from fine that it would be hilarious if it weren’t so bloody tragic. You did all you could for your neice my friend, please know that. And she has your love still… ❤ …and thank you so much for your kindness.
* I'm wrapping up here Maria, but will catch up with you as soon as I return to blogging, not long I hope. Thinking of you as your kids return to college…and sending hugs your way this September day … 🙂 xoxo
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You are exactly right and I’m sorry you have had to deal with it all yourself! 💜💙
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